I was asked on short notice to make a rare business trip to Indianapolis so I arrived in my never worn wool coat to the first snow of the year. So messy traffic and white lint all over my black pants. A delightful day all around! But the people here are so wonderful that it truly has been a wonderful trip.
I rescheduled my allergist appointment for the 17th. I told them of my fairly dire circumstances and they were able to get me in before the new year. For that I'm grateful.
In the meantime, I'm trying to do a good job of hiding this allergy from my coworkers and employer while away from my own kitchen. It's an interesting day when you can look back at the last few weeks and realize your eating habits are completely bizarre. I know if I'd read about anybody else eating bananas, brown rice, and meat that I'd call them a looney tune or that I'd consider them in the eating disorder realm. But when it's you, well, it's different. It's amazing that you can develop coping mechanisms for just about anything if it keeps you feeling well.
Fortunately, my boss told me before I left that I should eat like when I'm at home. Ok. I eat meat. And meat at a restaurant is expensive. But I found a place about a 1/2 mile walk down the way where I go every evening for dinner. I get free bananas at the hotel, lunch at Lilly's cafeteria is inexpensive and healthy, and then I get a real dinner. I'm feeling a bit peaked after tonight's steak, though. I need some carbs besides a banana, so I might need to go get a bowl of plain white rice at the asian place nearby and try to see if I can eat it with my steak since they know me at the bar by now. And by bar, I mean very nice restaurant, and by bar, I mean I am not eating in the restaurant by myself. And the wine is good.
The lunch will be my biggest challenge. I had sushi today and my stomach has been upset and my face puffy. I'll have to see if I can find plain rice or meat tomorrow. I can't stomach eating bananas all day and then just meat at night. And no diet coke tomorrow. I caved and had murmurs of chest something within the hour. We'll see how tomorrow goes.
Monday, December 7, 2009
Tuesday, December 1, 2009
Finally some answers, even if I had to figure it out myself
December 1, 2009
I've read through my old posts and can't believe how sick I was this summer and fall. I've had so many questions about how I'm doing now so thought I'd update the blog.
I kept putting off writing because every time I turned around I was waiting for another appointment or answer or had another question. I just wanted to put the final answer on the update. Well, see where that got me? Three months later. But possibly with some real answers so here goes.
About 6 or 7 weeks ago I had some odd reactions to food. I've been mildly allergic to eggs (shown by blood test and evidenced by facial swelling and feeling really bad when I eat them) and various forms of corn (evidenced by blisters while eating or under my skin on my fingers or dead skin in my mouth or being in severe abdominal pain when consuming the corn syrup variety). Sorry about the graphics, but had to explain as I get this question constantly. Folks think that because you don't go into shock and your throat doesn't close that you aren't allergic. Not true.
So 6 or 7 weeks ago I ate some pasta salad with mayo (it should be it's own food group) and my tongue swelled up and filled my mouth pretty well. Under my eyes swelled up and were very black. Not my normal mayo eating self for sure. Hmmm, I thought. Mayo has eggs in it, but I've never had this reaction.
The next weekend I ate Smithfield fried chicken and a ton of their fries. I worked outside landscaping all day and I deserved all of its greasy goodness. But I didn't deserve the mass of blisters behind each ear. Well, I thought. Not sure what was in the crunch coating on the chicken or the fries. And I was excessively exhausted all week. Power for the course. Felt normal.
Then I ate drank 1 1/2 cosmopolitan drinks and a small bite of a smore the following Saturday. I was still sick on Monday. Oh good God, I thought. Corn syrup in some of the drink flavoring (not much) and corn and such in the smore. All 1/8 of a bite of it...
I had HAD it. Every time I turned around I would go from ok to exhausted, swollen face, baggy and black eyes, raw tongue, hard to breathe, heart would race, chest would hurt, and I generally felt like crap. Or shit. Depended on the day.
So after some research, I decided to go on the good old pet formula diet...lamb and rice. Go down to the bare bones food that is known to be minimally bothersome to most people, and then add foods from there. So for the first few days I felt like a dog, but mostly because I felt sick from the drinks and smore. Then the clouds started to part.
I kept a journal of how I felt each day and what I ate, down to the kosher salt I put on my dinner. And I ate a lot of salt. When you are suspicious of everything on your plate, salt becomes a very important spice so food isn't so bland.
And I started to feel better. And better. And well. As in healthy. But the end of that first week I actually wanted to go running. I worked at landscaping for an entire day of hard physical labor and felt fine the next day. This could be something, I thought.
The following Wednesday, 16 days after starting the Alpo routine (with bananas), I about had a sugar fit mid-afternoon. I broke down and put a small blob of honey on my tongue. By evening my tongue was raw and the edge was covered in hard lumps and my tongue filled my mouth. I felt like I was going to have an asthma attack at any moment...it was hard to breath like I wasn't getting enough air...but I wasn't wheezing. I went up the stairs and I about collapsed from sheer exhaustion. And my face puffed up. I had a flashback to how I felt right before I went to the hospital. Odd, I thought. It really couldn't be THIS simple.
The following weekend we went to a movie and I broke down and had my first diet coke in a couple of weeks. Ahhhh, canned crack. Delightful! Then really NOT. I started having sharp chest pains half way through my big cup of carbonated delight and wasn't so delighted anymore. Are you friggin' kidding me, I thought...almost out loud in a yelling sort of voice.
A few days later I had 2 glasses of red wine, a big deal for Ms. Lightweight. Yummy! Then I went upstairs to go to bed. And had to rest with my head on the bathroom counter panting for air like I'd sprinted up the block. Those stairs took all my air and my heart started to race. And laying there in bed I put all the pieces together. Chest pain-check. Shortness of breath-check. Going up the stairs causing odd and extreme exhaustion-check. Asthma attack with no wheezing-check. Facial swelling-check. Racing heart-check. Food-oh no.
So now that I've been on this very careful diet for a while, I've weened off all my medication. I no longer take heart medication or steroids. My hair has stopped falling out. And I feel brilliantly good when I eat well for several days in a row. I have had some of the best workouts in well over a year. And going up the stairs doesn't make me feel odd.
I do have to be exceptionally careful with what I eat. I'm hoping that my appt. with an allergist on the 8th will help me formalize an approach for finding other food to eat. So far it's brown rice, any kind of meat or fish (not shellfish yet as scallops made me sick), and bananas. and avocados and olive oil. I work on other veggies and fruit, but most make my tongue raw and cause some facial swelling among other things. I'm hoping that as things calm down that the reactions to many things will die down. I was careful over the holidays, but opened up a bit and had fun eating some other things and have felt extremely run down and exhausted for a few days. I've eaten clean for 2 days and am starting to pick right back up again and am feeling good.
The good part is that I think I've found the answer and have made it come and go. A scientist's dream. But this is possibly a foodie's worst nightmare. My husband and I have very briefly discussed that we'll talk about my possible limitations after I see the allergist and after we are really certain what's going to happen.
On a side note, if I am still healthy in January and my food experiment is going well, Dr. Ley has decided he will take out 1/2 my thyroid where the nodule is. He still has more questions than answers about it and with the calcification and blood supply, it doesn't make him feel any better. At least it hasn't grown. He's just glad I'm feeling so well and doesn't want to introduce any new huge variable until I've stabilized for a few months. He'll also get me in to see his dietician when things stabilize as well, to make sure I'm not going to end up sick if I have to eat a limited diet.
I'll post more after my appointment on the 8th. Thank you for all your well wishes and prayers. They obviously worked :)
I've read through my old posts and can't believe how sick I was this summer and fall. I've had so many questions about how I'm doing now so thought I'd update the blog.
I kept putting off writing because every time I turned around I was waiting for another appointment or answer or had another question. I just wanted to put the final answer on the update. Well, see where that got me? Three months later. But possibly with some real answers so here goes.
About 6 or 7 weeks ago I had some odd reactions to food. I've been mildly allergic to eggs (shown by blood test and evidenced by facial swelling and feeling really bad when I eat them) and various forms of corn (evidenced by blisters while eating or under my skin on my fingers or dead skin in my mouth or being in severe abdominal pain when consuming the corn syrup variety). Sorry about the graphics, but had to explain as I get this question constantly. Folks think that because you don't go into shock and your throat doesn't close that you aren't allergic. Not true.
So 6 or 7 weeks ago I ate some pasta salad with mayo (it should be it's own food group) and my tongue swelled up and filled my mouth pretty well. Under my eyes swelled up and were very black. Not my normal mayo eating self for sure. Hmmm, I thought. Mayo has eggs in it, but I've never had this reaction.
The next weekend I ate Smithfield fried chicken and a ton of their fries. I worked outside landscaping all day and I deserved all of its greasy goodness. But I didn't deserve the mass of blisters behind each ear. Well, I thought. Not sure what was in the crunch coating on the chicken or the fries. And I was excessively exhausted all week. Power for the course. Felt normal.
Then I ate drank 1 1/2 cosmopolitan drinks and a small bite of a smore the following Saturday. I was still sick on Monday. Oh good God, I thought. Corn syrup in some of the drink flavoring (not much) and corn and such in the smore. All 1/8 of a bite of it...
I had HAD it. Every time I turned around I would go from ok to exhausted, swollen face, baggy and black eyes, raw tongue, hard to breathe, heart would race, chest would hurt, and I generally felt like crap. Or shit. Depended on the day.
So after some research, I decided to go on the good old pet formula diet...lamb and rice. Go down to the bare bones food that is known to be minimally bothersome to most people, and then add foods from there. So for the first few days I felt like a dog, but mostly because I felt sick from the drinks and smore. Then the clouds started to part.
I kept a journal of how I felt each day and what I ate, down to the kosher salt I put on my dinner. And I ate a lot of salt. When you are suspicious of everything on your plate, salt becomes a very important spice so food isn't so bland.
And I started to feel better. And better. And well. As in healthy. But the end of that first week I actually wanted to go running. I worked at landscaping for an entire day of hard physical labor and felt fine the next day. This could be something, I thought.
The following Wednesday, 16 days after starting the Alpo routine (with bananas), I about had a sugar fit mid-afternoon. I broke down and put a small blob of honey on my tongue. By evening my tongue was raw and the edge was covered in hard lumps and my tongue filled my mouth. I felt like I was going to have an asthma attack at any moment...it was hard to breath like I wasn't getting enough air...but I wasn't wheezing. I went up the stairs and I about collapsed from sheer exhaustion. And my face puffed up. I had a flashback to how I felt right before I went to the hospital. Odd, I thought. It really couldn't be THIS simple.
The following weekend we went to a movie and I broke down and had my first diet coke in a couple of weeks. Ahhhh, canned crack. Delightful! Then really NOT. I started having sharp chest pains half way through my big cup of carbonated delight and wasn't so delighted anymore. Are you friggin' kidding me, I thought...almost out loud in a yelling sort of voice.
A few days later I had 2 glasses of red wine, a big deal for Ms. Lightweight. Yummy! Then I went upstairs to go to bed. And had to rest with my head on the bathroom counter panting for air like I'd sprinted up the block. Those stairs took all my air and my heart started to race. And laying there in bed I put all the pieces together. Chest pain-check. Shortness of breath-check. Going up the stairs causing odd and extreme exhaustion-check. Asthma attack with no wheezing-check. Facial swelling-check. Racing heart-check. Food-oh no.
So now that I've been on this very careful diet for a while, I've weened off all my medication. I no longer take heart medication or steroids. My hair has stopped falling out. And I feel brilliantly good when I eat well for several days in a row. I have had some of the best workouts in well over a year. And going up the stairs doesn't make me feel odd.
I do have to be exceptionally careful with what I eat. I'm hoping that my appt. with an allergist on the 8th will help me formalize an approach for finding other food to eat. So far it's brown rice, any kind of meat or fish (not shellfish yet as scallops made me sick), and bananas. and avocados and olive oil. I work on other veggies and fruit, but most make my tongue raw and cause some facial swelling among other things. I'm hoping that as things calm down that the reactions to many things will die down. I was careful over the holidays, but opened up a bit and had fun eating some other things and have felt extremely run down and exhausted for a few days. I've eaten clean for 2 days and am starting to pick right back up again and am feeling good.
The good part is that I think I've found the answer and have made it come and go. A scientist's dream. But this is possibly a foodie's worst nightmare. My husband and I have very briefly discussed that we'll talk about my possible limitations after I see the allergist and after we are really certain what's going to happen.
On a side note, if I am still healthy in January and my food experiment is going well, Dr. Ley has decided he will take out 1/2 my thyroid where the nodule is. He still has more questions than answers about it and with the calcification and blood supply, it doesn't make him feel any better. At least it hasn't grown. He's just glad I'm feeling so well and doesn't want to introduce any new huge variable until I've stabilized for a few months. He'll also get me in to see his dietician when things stabilize as well, to make sure I'm not going to end up sick if I have to eat a limited diet.
I'll post more after my appointment on the 8th. Thank you for all your well wishes and prayers. They obviously worked :)
Monday, September 21, 2009
Appointment cancelled
Dr. Ley's office called this morning. They've decided to wait until I see the doctor at Duke University before going back in. This was nice as it saves me a $30 copay, but disappointing because I thought we might step forward with solving this mess. Oh, well.
I feel much better than I did then, and am now working...YAY!!! But have been feeling a bit off again and last night woke up in a full sweat in the middle of the night. I wish it was because I was hot and bothered, but that wasn't the case. Just a sheet soaker experience that made me feel gross. I also ached all weekend. All my joints, especially my knees, and some muscle aches, too. Enough I say, but all in good time.
Well, here's to crossing my fingers to good results on Oct. 5th at Duke.
I feel much better than I did then, and am now working...YAY!!! But have been feeling a bit off again and last night woke up in a full sweat in the middle of the night. I wish it was because I was hot and bothered, but that wasn't the case. Just a sheet soaker experience that made me feel gross. I also ached all weekend. All my joints, especially my knees, and some muscle aches, too. Enough I say, but all in good time.
Well, here's to crossing my fingers to good results on Oct. 5th at Duke.
Thursday, September 3, 2009
Outstanding News
I just received a call from my endo doc's nurse and she said all my blood tests came back normal. Never has there been such a sweet word as normal. She said that my calcitonin level is now back within the normal range, the first time it's been tested that way. Music to my ears and I think it made her weekend when I told her it made mine.
Big question of the day...With such a small nodule to begin with (0.2"), if it was cancerous, could the biopsy (four samples from that one nodule) have removed enough of the tissue to make a difference with the calcitonin level?
In any regard, it's nice to see the level go down, have my potassium back in normal range, and have my aldolase go back down. I may even go jog tomorrow :)
Big question of the day...With such a small nodule to begin with (0.2"), if it was cancerous, could the biopsy (four samples from that one nodule) have removed enough of the tissue to make a difference with the calcitonin level?
In any regard, it's nice to see the level go down, have my potassium back in normal range, and have my aldolase go back down. I may even go jog tomorrow :)
Tuesday, September 1, 2009
Surprise call from the Doc
It turned out to be my endocrinology doc wanted to know if the Duke doc had called me yet. Huh?
Turned out he had an entire packet of my health history all together and had placed a call to the last stop doc they all turn to at Duke. Their office was to call me to make an appointment to go see him. Uh, I don't remember discussing this with him, actually I am sure we didn't, but am so glad he went ahead and did. I've been waiting for my file to go to that one person who will have an aHA moment when they see what's going on. Or at least go aHA, I know what other tests to run.
I also asked him if we were going to discuss my thyroid removal when I go back in 3 weeks. He said that he wants to see what the Duke doc says, but will probably recommend we take out the half of the thyroid with the suspicous nodule and go from there. If the pathology report comes back negative, I'll still have half my thyroid. If it comes back papillary cancer, we did the right thing and I'll have half my thyroid, and if it comes back medullary, we'll probably go back and remove the entire thing plus some nodules, etc. At this point I don't want to deal with another biopsy since the nodule is so small and didn't release enough material the first time. I would rather err on the side of caution, with half my thyroid intact. Besides, it will also help us figure out if my slightly elevated calcitonin levels was just because my baseline is higher than the normal population or if there was reason for concern. I read somewhere that medullary thyroid cancer can (can, not that it will) metastesize as early as a calcitonin level of 10, and mine is still less than that.
I guess my next question will be, if this nodule is benign or not, could it be the reason everything is just wacky? The doc stated at the start that it could be all or nothing. He said that it was possible that with the vascular nature of the nodule that it could be throwing off lots of weird signals to my body, or that it may not be causing any of them and we luckily found it by chance.
I started my 2.5 mg of prednisone this morning. I don't know if it's affecting anything because I'm so hyped up over the possibility of getting to work from home. I'm sure it will take a few days.
On another note, it is actually cool today so I'm going to go for a real walk later, not just a saunter round the block. And will do my weinie weights first. Wish me luck!
Turned out he had an entire packet of my health history all together and had placed a call to the last stop doc they all turn to at Duke. Their office was to call me to make an appointment to go see him. Uh, I don't remember discussing this with him, actually I am sure we didn't, but am so glad he went ahead and did. I've been waiting for my file to go to that one person who will have an aHA moment when they see what's going on. Or at least go aHA, I know what other tests to run.
I also asked him if we were going to discuss my thyroid removal when I go back in 3 weeks. He said that he wants to see what the Duke doc says, but will probably recommend we take out the half of the thyroid with the suspicous nodule and go from there. If the pathology report comes back negative, I'll still have half my thyroid. If it comes back papillary cancer, we did the right thing and I'll have half my thyroid, and if it comes back medullary, we'll probably go back and remove the entire thing plus some nodules, etc. At this point I don't want to deal with another biopsy since the nodule is so small and didn't release enough material the first time. I would rather err on the side of caution, with half my thyroid intact. Besides, it will also help us figure out if my slightly elevated calcitonin levels was just because my baseline is higher than the normal population or if there was reason for concern. I read somewhere that medullary thyroid cancer can (can, not that it will) metastesize as early as a calcitonin level of 10, and mine is still less than that.
I guess my next question will be, if this nodule is benign or not, could it be the reason everything is just wacky? The doc stated at the start that it could be all or nothing. He said that it was possible that with the vascular nature of the nodule that it could be throwing off lots of weird signals to my body, or that it may not be causing any of them and we luckily found it by chance.
I started my 2.5 mg of prednisone this morning. I don't know if it's affecting anything because I'm so hyped up over the possibility of getting to work from home. I'm sure it will take a few days.
On another note, it is actually cool today so I'm going to go for a real walk later, not just a saunter round the block. And will do my weinie weights first. Wish me luck!
Monday, August 31, 2009
More of the Same
I was hoping, but not counting on, some new news today. But nothing really new. Dr. Ley wanted to see how I felt, that's pretty much it. I thought he was going to be talking to the doctors at Duke, but he was just watching my progress since I'm not stable. I was thinking that that would be an excellent reason to talk to Duke, but I guess NOT. Grumble.
Because the cortisol test seemed to help so much, he had me on 7.5 mg of prednisone a day. He backed me off to 5 several weeks ago. I really started feeling more tired and backsliding with other symptoms starting the middle of last week. So he is thinking the prednisone isn't helping and wants me to wean down to 2.5 mg starting tomorrow, and 0 in a week. Any bets that I'll feel like the compost pile by this time next week? My bet is that the lowered prednisone caught up with me and that's why I'm feeling worse. But since he is tinkering, he wants me to keep him updated when I feel a change. My bet is that I'll call Thursday night or Friday morning, but only God knows right now.
I will say that I'm impressed that he has called to and talked each of my other docs, including my cardiologist. I had 3 very different heart function results and he wanted clarification. I REALLY appreciate that he is taking the time to go over every detail and note and is talking to the other specialists to truly find what is going on. It gives me faith that he is the right person, not just the right doctor, but the right person to entrust him with my health right now.
On another note, he does want to revisit taking out either my thyroid nodule or the entire thyroid at my next visit in three weeks. While the bibopsy didn't show the worst cancer, it did show suspect material and he said the vascular nature of it and the calcification in it was troublesome and we shouldn't wait much longer to make a decision on what to do. I was like 'take it NOW'. He stressed he sees it as a separate issue and wants to wait three weeks and I said 'I don't CARE'. I think I entertain him...and we will discuss further in three weeks.
I still say that part of my crap sandwich feeling is from my thyroid. Don't ask me how I know, I've just felt it for years that something was off and that it involves my thyroid. Now that there is the majority liklihood that it will be cancerous at some point, I'm just not in the mood to sit and whittle away and twiddle my thumbs. I'm action oriented and sitting and discussing isn't something I need to do anymore...I'm ready. I weighed all the facts as I acquired them and did so much research that as I received more facts, I knew where to sort them into my brain. The fact that my doc is very highly regarded and says that the nodule is cause for concern, when my research shows the vascularization and calcification and calcitonin levels back that up, well, I'm ready. Pop the mask on my face and lets roll with it. I guess I have such a health history of getting the unlikely news, of being the 1 in 100, and that sort of thing makes me more inclined to just deal with something now instead of sitting and waiting.
There was an additional blood letting at the end of the visit, but I didn't really cringe. Guess it's been long enough my veins and arms didn't automatically hide. He is retesting the calcitonin, aldolase, cpk, and running the standard metabolic panel. He checking to see if the calcitonin is still above normal or is going up or staying the same. He is running the aldolase because it was normal at the hospital and elevated several weeks later. He is running the cpk to make sure if the aldolase is elevated that it isn't my heart, and the panel because my potassium has been going up and down and around and around. Fingers crossed that all will be normal.
Fingers crossed and prayers that the prednisone reduction doesn't cause me to because really weak or that if it does that it provides the doc with some answers. And fingers crossed that the Duke doc can help provide clarity.
Because the cortisol test seemed to help so much, he had me on 7.5 mg of prednisone a day. He backed me off to 5 several weeks ago. I really started feeling more tired and backsliding with other symptoms starting the middle of last week. So he is thinking the prednisone isn't helping and wants me to wean down to 2.5 mg starting tomorrow, and 0 in a week. Any bets that I'll feel like the compost pile by this time next week? My bet is that the lowered prednisone caught up with me and that's why I'm feeling worse. But since he is tinkering, he wants me to keep him updated when I feel a change. My bet is that I'll call Thursday night or Friday morning, but only God knows right now.
I will say that I'm impressed that he has called to and talked each of my other docs, including my cardiologist. I had 3 very different heart function results and he wanted clarification. I REALLY appreciate that he is taking the time to go over every detail and note and is talking to the other specialists to truly find what is going on. It gives me faith that he is the right person, not just the right doctor, but the right person to entrust him with my health right now.
On another note, he does want to revisit taking out either my thyroid nodule or the entire thyroid at my next visit in three weeks. While the bibopsy didn't show the worst cancer, it did show suspect material and he said the vascular nature of it and the calcification in it was troublesome and we shouldn't wait much longer to make a decision on what to do. I was like 'take it NOW'. He stressed he sees it as a separate issue and wants to wait three weeks and I said 'I don't CARE'. I think I entertain him...and we will discuss further in three weeks.
I still say that part of my crap sandwich feeling is from my thyroid. Don't ask me how I know, I've just felt it for years that something was off and that it involves my thyroid. Now that there is the majority liklihood that it will be cancerous at some point, I'm just not in the mood to sit and whittle away and twiddle my thumbs. I'm action oriented and sitting and discussing isn't something I need to do anymore...I'm ready. I weighed all the facts as I acquired them and did so much research that as I received more facts, I knew where to sort them into my brain. The fact that my doc is very highly regarded and says that the nodule is cause for concern, when my research shows the vascularization and calcification and calcitonin levels back that up, well, I'm ready. Pop the mask on my face and lets roll with it. I guess I have such a health history of getting the unlikely news, of being the 1 in 100, and that sort of thing makes me more inclined to just deal with something now instead of sitting and waiting.
There was an additional blood letting at the end of the visit, but I didn't really cringe. Guess it's been long enough my veins and arms didn't automatically hide. He is retesting the calcitonin, aldolase, cpk, and running the standard metabolic panel. He checking to see if the calcitonin is still above normal or is going up or staying the same. He is running the aldolase because it was normal at the hospital and elevated several weeks later. He is running the cpk to make sure if the aldolase is elevated that it isn't my heart, and the panel because my potassium has been going up and down and around and around. Fingers crossed that all will be normal.
Fingers crossed and prayers that the prednisone reduction doesn't cause me to because really weak or that if it does that it provides the doc with some answers. And fingers crossed that the Duke doc can help provide clarity.
Friday, August 28, 2009
More answers Monday?
It's been a while since I've posted and many of you have asked for updates. I've been kind of trying to ignore this whole health issue away, hoping that a lack of attention will get rid of it, but it hasn't...of course.
My biopsy came back inconclusive due to not enough material. I was like WHAT?! Y'all poked me with 6 needles, came back with a 7th, and you STILL didn't get enough material??? The good news is that they had enough material to stain and test for the worst thyroid cancer, which can kill you within months, but I never thought I had that kind, so don't really understand why the pathologist tested for it first. It was my calcitonin that was high, which indicates possible medullary thyroid cancer, so I feel they should have tested for that FIRST...
The great and fantastic news is that we found out that my uncle did NOT have medullary thyroid cancer. I had so many questions when I thought he had it, as in why didn't they tell him to tell his daughter and brothers to get tested and why was he ok after so many years with such a large tumor to begin with. It just didn't add up. Thankfully, my doctor asked for a verification from my uncle's oncologist and when my uncle talked with their office, he found out that the first person who looked at the record didn't look at the actual pathology report. They looked at something else. So come to find out that he had papillary thyroid cancer, which is the type of cancer doctor's choose to have if they have to choose a type of cancer to have personally. So I've been told by several doctor's. So that makes me feel relieved for my uncle's sake. A little bit for me, but mostly for him.
The biopsy and Uncle's findings still don't answer why my calcitonin level is elevated. My doctor has been talking with Duke University about my test results, etc. I'm sure he has shared with them my bizarre reaction to the cortisol test (I personally want to take the test again because I had a magnificent amount of energy with no crash!) as well all the other fun stuff. He was also going to look at my latest aldolase level. In the hospital it tested normal, then at the neurologist's request, the office lab took it again (Remember Boris and the drug testing? I sure do.) This time it came back elevated. So my doc was going to call and compare the tests to see if it was really saying something or not as any change might tell him something. Aldolase can tell if there is muscle damage going on or a number of other things I don't really want to think about.
So as you can see, it's been over two weeks since my bibopsy and I'm still no more knowledgeable about anything. Well, I guess I now know the term 'aldolase' and what it means, but that's not what I was going for!
So over the past several weeks I've tried to ignore this pain in the a$$ crap fest. I've been working as much as I can around the house to unpack, organize, paint. Basically everything I couldn't do earlier this summer when we moved it. I do it in part because complete disorder drives me insane, and in part because I love to organize things and make things look great (which is good due to number one). However, a small part of me is concerned that this is going to come back with a vengeance and take revenge for all the activity I've been doing and I'll be unable to do anything again. It's started catching up to me, starting last weekend. I could feel myself slowing down a little bit. Then over the course of the week I had some pretty rough days with being awfully tired, down to the core, where all I want to do is give in and lay around in the sun like the cats. Although the sun was too hot. My skin would burn and feel so hot inside, but feel fine on the outside. And when I worked for a while, I would feel odd, and I could tell that if I went to look in the mirror, that my face would either be completely pale or that the skin around my nose would be oddly bloodless white. I'm a face flusher and I get red when I get warm, move around, exercise, or basically breathe. So to go that pale while feeling odd at the same time is disconcerning, especially with a heart problem. So ignore has been the name of the game. All is well, fa la la la la, tip toe through the tulips, and all that jazz. I am happy to report that part of it has worked as I have completed my 10 months of backed up filing, have redone the file cabinet, and our bonus room has been transformed from a toddler death trap to a pretty decent room. If I felt like it I could turn on an exercise video and not put my foot through a picture frame and wouldn't slip on a stack of recipes torn out of countless magazines. I mean, I DON'T feel like it, but I COULD. I'm sure the garbage men are happy as I've thrown out bags upon bags of useless papers and the container will be much lighter from here on out. I guess my next question should be, how in the world did so much stuff get into out house in the first place???
I'll put the doc's answers, or lack thereof, on here on Monday. Until then, I'm going to try to ignore it again all weekend...just in case it works this time.
My biopsy came back inconclusive due to not enough material. I was like WHAT?! Y'all poked me with 6 needles, came back with a 7th, and you STILL didn't get enough material??? The good news is that they had enough material to stain and test for the worst thyroid cancer, which can kill you within months, but I never thought I had that kind, so don't really understand why the pathologist tested for it first. It was my calcitonin that was high, which indicates possible medullary thyroid cancer, so I feel they should have tested for that FIRST...
The great and fantastic news is that we found out that my uncle did NOT have medullary thyroid cancer. I had so many questions when I thought he had it, as in why didn't they tell him to tell his daughter and brothers to get tested and why was he ok after so many years with such a large tumor to begin with. It just didn't add up. Thankfully, my doctor asked for a verification from my uncle's oncologist and when my uncle talked with their office, he found out that the first person who looked at the record didn't look at the actual pathology report. They looked at something else. So come to find out that he had papillary thyroid cancer, which is the type of cancer doctor's choose to have if they have to choose a type of cancer to have personally. So I've been told by several doctor's. So that makes me feel relieved for my uncle's sake. A little bit for me, but mostly for him.
The biopsy and Uncle's findings still don't answer why my calcitonin level is elevated. My doctor has been talking with Duke University about my test results, etc. I'm sure he has shared with them my bizarre reaction to the cortisol test (I personally want to take the test again because I had a magnificent amount of energy with no crash!) as well all the other fun stuff. He was also going to look at my latest aldolase level. In the hospital it tested normal, then at the neurologist's request, the office lab took it again (Remember Boris and the drug testing? I sure do.) This time it came back elevated. So my doc was going to call and compare the tests to see if it was really saying something or not as any change might tell him something. Aldolase can tell if there is muscle damage going on or a number of other things I don't really want to think about.
So as you can see, it's been over two weeks since my bibopsy and I'm still no more knowledgeable about anything. Well, I guess I now know the term 'aldolase' and what it means, but that's not what I was going for!
So over the past several weeks I've tried to ignore this pain in the a$$ crap fest. I've been working as much as I can around the house to unpack, organize, paint. Basically everything I couldn't do earlier this summer when we moved it. I do it in part because complete disorder drives me insane, and in part because I love to organize things and make things look great (which is good due to number one). However, a small part of me is concerned that this is going to come back with a vengeance and take revenge for all the activity I've been doing and I'll be unable to do anything again. It's started catching up to me, starting last weekend. I could feel myself slowing down a little bit. Then over the course of the week I had some pretty rough days with being awfully tired, down to the core, where all I want to do is give in and lay around in the sun like the cats. Although the sun was too hot. My skin would burn and feel so hot inside, but feel fine on the outside. And when I worked for a while, I would feel odd, and I could tell that if I went to look in the mirror, that my face would either be completely pale or that the skin around my nose would be oddly bloodless white. I'm a face flusher and I get red when I get warm, move around, exercise, or basically breathe. So to go that pale while feeling odd at the same time is disconcerning, especially with a heart problem. So ignore has been the name of the game. All is well, fa la la la la, tip toe through the tulips, and all that jazz. I am happy to report that part of it has worked as I have completed my 10 months of backed up filing, have redone the file cabinet, and our bonus room has been transformed from a toddler death trap to a pretty decent room. If I felt like it I could turn on an exercise video and not put my foot through a picture frame and wouldn't slip on a stack of recipes torn out of countless magazines. I mean, I DON'T feel like it, but I COULD. I'm sure the garbage men are happy as I've thrown out bags upon bags of useless papers and the container will be much lighter from here on out. I guess my next question should be, how in the world did so much stuff get into out house in the first place???
I'll put the doc's answers, or lack thereof, on here on Monday. Until then, I'm going to try to ignore it again all weekend...just in case it works this time.
Wednesday, August 12, 2009
Bibopsy was Today
Mom and I went in for my bibopsy today. It was a well orchestrated event, I'll say. The ultrasound tech explained everything they would do and told me I would have a bruise 'hickie' on my neck by this evening. He said that the little old ladies get a tickle over having their first 'hickie' in decades. One of the aids came in with the tray of needles she called the 'goodies'. Hey, at least she got me to laughing. The tech got my neck and head in position to make sure he could find the nodules, then the radiologist came in. She took out six separate samples (read six needles and syringes), three from each nodule. The first sample must have been in the middle of the active nodule as she said that one was the money maker. It was funny to see someone so excited about pulling tissue from a nodule! She said they don't normall pull samples from nodules this small unless there is a family history or, as is my case, there is a family history, an elevated calcitonin level, AND calcification in the nodule. This last bit of information was new to me so I looked it up when I came home and have no more insight into if this thing is cancer or not. Sigh. She gave the samples to a cytologist? to prep for the pathologist to read (Exactly how many ologists am I going to meet???) They came back after ten minutes because the pathologist said they needed one more sample for the special dye they use to test for medullary thyroid cancer. Then they put a band-aid on my throat and took me back out to Mom.
The lidocaine shots (three in all) used to control pain really didn't sting at all, which was a wonderful surprise (in MY favor this time). The seven fine needle aspirations were really not too pleasant, though. I didn't expect it to be that uncomfortable, but it was still better than the nerve shock testing from Monday.
However, I was off like a shot and motioned to Mom to get the heck out of dodge. Today was so incredibly difficult as I am starting to get severe medical 'touching' fatigue. I am tired of being touched, tested, sampled. I know it is so incredibly important and I am not done with all of it and the medical staff have all been wonderful, but I just don't want to be touched anymore and am finding I'm getting hyper-sensitive to all of it. The only thing that got me through today was going into a meditative state and even putting my fingers in a type of 'ohmmmm' position while I pretending I was a yoga master at the beach, or anywhere but there.
Mom and I went out to lunch and then went for a movie so I could shake the 'don't touch me's' and it helped a lot. My throat is achy where the tissue was removed, but it should feel better by tomorrow. Can't wait to see my hickie :)
The bad news is that the report will not be done for 3-5 business days, so it looks like another week of waiting and treading water. I'm so frustrated as this will make it a 3 week wait from the time they discovered the cancer marker and nodules to the time I'll find out and I think it is pure torture. I also received a postcard from my PA that my appt. was moved from the 18th to the 17th. I'm not sure what that's all about. Might be a meeting she needed to schedule around, but my paranoid brain is wondering if they want to meet with me a day earlier. Now I'm also wondering if the pathology report will even be done when I go in. Sigh. We'll see.
The lidocaine shots (three in all) used to control pain really didn't sting at all, which was a wonderful surprise (in MY favor this time). The seven fine needle aspirations were really not too pleasant, though. I didn't expect it to be that uncomfortable, but it was still better than the nerve shock testing from Monday.
However, I was off like a shot and motioned to Mom to get the heck out of dodge. Today was so incredibly difficult as I am starting to get severe medical 'touching' fatigue. I am tired of being touched, tested, sampled. I know it is so incredibly important and I am not done with all of it and the medical staff have all been wonderful, but I just don't want to be touched anymore and am finding I'm getting hyper-sensitive to all of it. The only thing that got me through today was going into a meditative state and even putting my fingers in a type of 'ohmmmm' position while I pretending I was a yoga master at the beach, or anywhere but there.
Mom and I went out to lunch and then went for a movie so I could shake the 'don't touch me's' and it helped a lot. My throat is achy where the tissue was removed, but it should feel better by tomorrow. Can't wait to see my hickie :)
The bad news is that the report will not be done for 3-5 business days, so it looks like another week of waiting and treading water. I'm so frustrated as this will make it a 3 week wait from the time they discovered the cancer marker and nodules to the time I'll find out and I think it is pure torture. I also received a postcard from my PA that my appt. was moved from the 18th to the 17th. I'm not sure what that's all about. Might be a meeting she needed to schedule around, but my paranoid brain is wondering if they want to meet with me a day earlier. Now I'm also wondering if the pathology report will even be done when I go in. Sigh. We'll see.
Tuesday, August 11, 2009
Difficult conversation
I apparently missed an appointment with my former general practitioner yesterday. Their practice has an automated system that calls two days before your appt. and I didn't get the call . I don't really remember making the appointment as I was having trouble walking that day with the shakes and trouble breathing. Not that he would have known, he didn't take the time to watch, even when his nurse relayed what she saw. This is the doctor that pushed me to take Zoloft when I am truly not depressed, and rolled his eyes when I told him that the hospitalogist and endocrinologist wanted to send me to Mayo or something to figure out what this was. He truly felt it was just a physical manifestation of stress and that taking Zoloft should fix it. I also kept telling him at each appt. that I absolutely feel something in my lower throat/chest area, that I've been coughing like there is something irritating my throat, and that my voice gets hoarse and changes on the days that I really feel that 'thing'. Once again, he said it was just a physical manifestation of stress and said that while he was positive I THOUGHT I felt something, there wasn't actually anything there. Note that I am going to my thyroid bibopsy tomorrow for two thyroid nodules. Sigh.
I had decided that when we figure this out, I was going to send a very professional letter to let the doctor know what was going on with me so he could use that information in case he gets another case like mine. I wanted to use it as an opportunity to learn for the whole series of doctors who missed this, and not in a mean or petty way, but to truly try to help someone else who goes into their offices after me.
Well, his office called and wanted to know if I wanted to reschedule. Pressure! So I decided in a split second to be frank and tell the truth. I told the lady that while I was still with the overall practice, I was switching to the main office where they truly believe that there is something going on and that I am having a thyroid biopsy in the morning due to an elevated calcitonin level, a marker for medullary thyroid cancer. That I just didn't trust him because he thinks this is all due to stress, when obviously, there is something else going on. She thanked me for letting her know, and said she would pass that along to the doctor.
I feel better having him know I am leaving, but I don't know that he will actually 'get' it. I will still probably send out letters when I am done anyway or ask my awesome PA if the practice routinely shares information about things like this so that the neurologist and my former doc will know to look harder next time instead of patting their women patients on the head and wanting to give them a pill or drug screen.
Right now I am trying to distract myself from the bibopsy coming up tomorrow. I am VERY tired again today and just don't want to go there.
I want to thank everyone for the cards and emails full of prayers and things that make me laugh! Until next time...
I had decided that when we figure this out, I was going to send a very professional letter to let the doctor know what was going on with me so he could use that information in case he gets another case like mine. I wanted to use it as an opportunity to learn for the whole series of doctors who missed this, and not in a mean or petty way, but to truly try to help someone else who goes into their offices after me.
Well, his office called and wanted to know if I wanted to reschedule. Pressure! So I decided in a split second to be frank and tell the truth. I told the lady that while I was still with the overall practice, I was switching to the main office where they truly believe that there is something going on and that I am having a thyroid biopsy in the morning due to an elevated calcitonin level, a marker for medullary thyroid cancer. That I just didn't trust him because he thinks this is all due to stress, when obviously, there is something else going on. She thanked me for letting her know, and said she would pass that along to the doctor.
I feel better having him know I am leaving, but I don't know that he will actually 'get' it. I will still probably send out letters when I am done anyway or ask my awesome PA if the practice routinely shares information about things like this so that the neurologist and my former doc will know to look harder next time instead of patting their women patients on the head and wanting to give them a pill or drug screen.
Right now I am trying to distract myself from the bibopsy coming up tomorrow. I am VERY tired again today and just don't want to go there.
I want to thank everyone for the cards and emails full of prayers and things that make me laugh! Until next time...
Monday, August 10, 2009
Today was quite 'shocking'
August 10, 2009
Today was my neurological nerve/muscle test for things like myasthenia gravis, muscular dystrophy, etc. I wasn't excited to go back to visit Boris, but knew I'd better cross this test off my list of things that give me answers. I really didn't know what to expect so just tried to chill out this weekend. Glad I didn't know more about it because sometimes ignorance is bliss. The nurse was so wonderful (aren't they usually!!!) and explained everything and told me I could swear at her or hit her if it made me feel better. While it made me laugh, my inner voice was thinking 'What the!!!' At least I knew she knew what it felt like because when they get new equipment in they practice on each other.
So she puts electrodes in various positions on my left leg and my left arm. Then she stimulated different nerves with an electrical impulse. For those of us medically uneducated, this means she is going to shock you. Some were just uncomfortable and I could handle those. Others felt similar to what I would think a doggie shock collar feels like (to my last wonderful dog, I am SO sorry!) and wowwwzer, I almost took her up on her offer to hit her if I hadn't been spasming in my sexy gown that opens in the back. I felt like an idot caught in one of those episodes of Cops, with bad boys, bad boys, whatcha gonna do... singing in my mind as I pictured myself getting tasered.
Then the neurologist came in to test the muscles and this is where they use a needle. I was about to call it quits, gown flapping in the breeze and all as I made a beeline for the car, but I figured that I just needed to suck it up so I could have a true picture of what was going on. I didn't think that my problem was neurological, but I really don't know anything about that topic and wanted to make sure I really knew versus just being a scared, sweaty smarty pants who was tired of being poked. Then he put the needle in my leg and I was like 'THAT was IT?' While the shocks were completely awful, the needle being inserted into different muscles really was just a little bit uncomfortable.
So Boris comes back in after looking at the test results and said that everything looked great, except for what looked like old damage from an injury in my lower back (L5). I was extremely amazed as this is one of my old herniated discs that I have trouble with when the disc and annular tear get aggravated with too much of the wrong activity. He didn't know about this injury from when I was thrown off my horse 15 years ago. So while I was not happy with his rapid diagnosis of anxiety as being the probable cause of my problems from the last visit, he is now joining the docs at the top of my list as being really sharp with the diagnostic tools he has available. Very amazing.
Right after Mom and I got home (yes, she got to see me shocked and poked and I don't think I saw her smile) the wonderful nurse called and said the rest of my neurological tests (AND drug screening!) came back negative or normal. So the neurologist has now cleared me, too, so all is quiet and well until Wednesday. All I know is that the bibopsy (My Big Fat Greek Wedding reference) cannot be as bad as the electrodes so I'll be sleeping well.
I've been pushing it a bit the last few days and trying to get some small projects done around the house, but was kind of smacked back down and am trying to rest more again. My heart went into its minor twisting game with me on Saturday night while I was trying to sleep and it lasted for about an hour. Then I did a little bit more Sunday morning while it was hot out and my heart decided to pull its stunt during the start of Harry Potter at the movie theatre in the middle of the afternoon. I usually prefer action movies at the theatre, but was glad this installment of Harry Potter was a tamer version. I don't think I would have made it through Transformers. I tried to pick up my prescription of Bystolic for my heart as the sample bottle was nearly gone and found out my insurance company needs to pre-approve it by speaking with my cardiologist. I told my insurance company that they can choose to pay via emergency room visits or drug benefits. We'll see how long it takes and if I'll need another sample bottle. This stuff seems to be keeping my heart 'sane' and me out of the ER so hopefully this part will be over soon.
So overall I do feel better. But over the last week or so I've come to the conclusion that while the medication is wonderful, it truly is just keeping something bigger at bay. Whatever it is, is still there lurking. I can feel everything that was bothering me before, it's just been muted. I am dearly grateful for the doctors who have gotten me this far and for the medications that are keeping me going, but now I feel like I'm treading water. And you can only tread water for so long...
Today was my neurological nerve/muscle test for things like myasthenia gravis, muscular dystrophy, etc. I wasn't excited to go back to visit Boris, but knew I'd better cross this test off my list of things that give me answers. I really didn't know what to expect so just tried to chill out this weekend. Glad I didn't know more about it because sometimes ignorance is bliss. The nurse was so wonderful (aren't they usually!!!) and explained everything and told me I could swear at her or hit her if it made me feel better. While it made me laugh, my inner voice was thinking 'What the!!!' At least I knew she knew what it felt like because when they get new equipment in they practice on each other.
So she puts electrodes in various positions on my left leg and my left arm. Then she stimulated different nerves with an electrical impulse. For those of us medically uneducated, this means she is going to shock you. Some were just uncomfortable and I could handle those. Others felt similar to what I would think a doggie shock collar feels like (to my last wonderful dog, I am SO sorry!) and wowwwzer, I almost took her up on her offer to hit her if I hadn't been spasming in my sexy gown that opens in the back. I felt like an idot caught in one of those episodes of Cops, with bad boys, bad boys, whatcha gonna do... singing in my mind as I pictured myself getting tasered.
Then the neurologist came in to test the muscles and this is where they use a needle. I was about to call it quits, gown flapping in the breeze and all as I made a beeline for the car, but I figured that I just needed to suck it up so I could have a true picture of what was going on. I didn't think that my problem was neurological, but I really don't know anything about that topic and wanted to make sure I really knew versus just being a scared, sweaty smarty pants who was tired of being poked. Then he put the needle in my leg and I was like 'THAT was IT?' While the shocks were completely awful, the needle being inserted into different muscles really was just a little bit uncomfortable.
So Boris comes back in after looking at the test results and said that everything looked great, except for what looked like old damage from an injury in my lower back (L5). I was extremely amazed as this is one of my old herniated discs that I have trouble with when the disc and annular tear get aggravated with too much of the wrong activity. He didn't know about this injury from when I was thrown off my horse 15 years ago. So while I was not happy with his rapid diagnosis of anxiety as being the probable cause of my problems from the last visit, he is now joining the docs at the top of my list as being really sharp with the diagnostic tools he has available. Very amazing.
Right after Mom and I got home (yes, she got to see me shocked and poked and I don't think I saw her smile) the wonderful nurse called and said the rest of my neurological tests (AND drug screening!) came back negative or normal. So the neurologist has now cleared me, too, so all is quiet and well until Wednesday. All I know is that the bibopsy (My Big Fat Greek Wedding reference) cannot be as bad as the electrodes so I'll be sleeping well.
I've been pushing it a bit the last few days and trying to get some small projects done around the house, but was kind of smacked back down and am trying to rest more again. My heart went into its minor twisting game with me on Saturday night while I was trying to sleep and it lasted for about an hour. Then I did a little bit more Sunday morning while it was hot out and my heart decided to pull its stunt during the start of Harry Potter at the movie theatre in the middle of the afternoon. I usually prefer action movies at the theatre, but was glad this installment of Harry Potter was a tamer version. I don't think I would have made it through Transformers. I tried to pick up my prescription of Bystolic for my heart as the sample bottle was nearly gone and found out my insurance company needs to pre-approve it by speaking with my cardiologist. I told my insurance company that they can choose to pay via emergency room visits or drug benefits. We'll see how long it takes and if I'll need another sample bottle. This stuff seems to be keeping my heart 'sane' and me out of the ER so hopefully this part will be over soon.
So overall I do feel better. But over the last week or so I've come to the conclusion that while the medication is wonderful, it truly is just keeping something bigger at bay. Whatever it is, is still there lurking. I can feel everything that was bothering me before, it's just been muted. I am dearly grateful for the doctors who have gotten me this far and for the medications that are keeping me going, but now I feel like I'm treading water. And you can only tread water for so long...
Friday, August 7, 2009
Good Days
Thursday started out pretty well. My head wanted to take a nap alllll day, but my body felt fairly strong. Mom and I went to Kohl's to find some good tennis shoes for her to wear. Of course going to Kohl's for one thing never translates to leaving with one thing. Maybe one BAG... Anyways, I started feeling a bit off close to lunch and realized that I had forgotten to take my steriods prednisone and florinef with breakfast. Before long I felt like I had the shakes. What was weird was that I felt like I was stuck on vibrate, but when I looked at my hands they were steady. It made no sense because it felt like the blood coursing through my veins was turbo-charged and I could tell you where all my veins were running or shimmying their way through my upper body. I was thinking about taking Mom to lunch before heading home, but there really wasn't any 'go' left in my get-up-and-go. I took my medication as soon as we walked through the door and within the hour I felt so much better.
I normally take my prednisone and florinef around 9 AM. I really don't know why being 3 hours late would cause me to get the shakes and feel so exhausted and out of gas unless this stuff is really addicting to the body or it's really necessary for me to be ok. This will be one of the first questions I ask my doctors. Doctors. Who ever thought you could have so many of them that you have to go through your mental rolodex when they call to remind you of your next appointment with them.
I felt pretty decent after the medication kicked in and I actually helped pick up the kitchen after dinner (a shock even when I feel well) and went for a short walk with Mom. I lasted a couple of blocks and then sat out on our park bench to watch the clouds reflect the sunset behind us. Very beautiful and peaceful.
Today was really special. I woke up fairly quickly and my head didn't want to nap all day. Mom started sweeping the floor as our deal was that we would clean, THEN go to the beach if I was still up for it. Only Moms get away with this sort of thing. I quickly joined in and before too long the cat hair tumble weeds were rounded up, the couch was defurred, and the laundry folded. We ended up cleaning and picking up for about two hours. I was so drained at the end, but I made it through TWO HOURS of physical exertion and I survived. We had some tasty leftover lasagna (Mom makes the best ever) and headed out to the beach. I ended up going into the water with her three times and while I got pretty tired, I survived once again. Then I helped make dinner, a first in weeks, and ate at least my fair share.
This is the best I've felt since the middle of June when my sister and family were here. I'm so happy that I've proven today that I can once again take care of myself at home. And so grateful I've had either Kelli or Mom gracefully pushing me every day to help me get to this point. I'm also grateful for Chip just loving me and letting Mom and Kelli tell me what to do. I'm used to that dynamic with them (not that I always listen) and want to make sure that Chip and I can move forward from this without him turning into one of my parents. That would be weird.
So the question that really weighs on me is 'where is this recovery coming from?' Being a former Quality Engineer by trade and analytical by birth, I have a need to make my condition come and go to prove what is helping and what is not. But am too terrified after my last 3 hour lapse to stop this medication without medical advice. REALLY good medical advice. Like not from my last general practitioner who thinks this is stress. But that's for another day and a doctor who isn't him.
I normally take my prednisone and florinef around 9 AM. I really don't know why being 3 hours late would cause me to get the shakes and feel so exhausted and out of gas unless this stuff is really addicting to the body or it's really necessary for me to be ok. This will be one of the first questions I ask my doctors. Doctors. Who ever thought you could have so many of them that you have to go through your mental rolodex when they call to remind you of your next appointment with them.
I felt pretty decent after the medication kicked in and I actually helped pick up the kitchen after dinner (a shock even when I feel well) and went for a short walk with Mom. I lasted a couple of blocks and then sat out on our park bench to watch the clouds reflect the sunset behind us. Very beautiful and peaceful.
Today was really special. I woke up fairly quickly and my head didn't want to nap all day. Mom started sweeping the floor as our deal was that we would clean, THEN go to the beach if I was still up for it. Only Moms get away with this sort of thing. I quickly joined in and before too long the cat hair tumble weeds were rounded up, the couch was defurred, and the laundry folded. We ended up cleaning and picking up for about two hours. I was so drained at the end, but I made it through TWO HOURS of physical exertion and I survived. We had some tasty leftover lasagna (Mom makes the best ever) and headed out to the beach. I ended up going into the water with her three times and while I got pretty tired, I survived once again. Then I helped make dinner, a first in weeks, and ate at least my fair share.
This is the best I've felt since the middle of June when my sister and family were here. I'm so happy that I've proven today that I can once again take care of myself at home. And so grateful I've had either Kelli or Mom gracefully pushing me every day to help me get to this point. I'm also grateful for Chip just loving me and letting Mom and Kelli tell me what to do. I'm used to that dynamic with them (not that I always listen) and want to make sure that Chip and I can move forward from this without him turning into one of my parents. That would be weird.
So the question that really weighs on me is 'where is this recovery coming from?' Being a former Quality Engineer by trade and analytical by birth, I have a need to make my condition come and go to prove what is helping and what is not. But am too terrified after my last 3 hour lapse to stop this medication without medical advice. REALLY good medical advice. Like not from my last general practitioner who thinks this is stress. But that's for another day and a doctor who isn't him.
Wednesday, August 5, 2009
August 6, 2009
This entry is more for myself to document in one place all the records I've kept. This log is for the several days I tracked a lot of chest pain and other stuff I had going on before I ended up in the hospital. This also helps me remember this is NOT in my head. Note that the cardiologist didn't want to look at my notes (in my pretty Excel spreadsheet) and told me that he didn't think anything was going on with my heart. Fortunately, he started running tests anyway...The internal medicine PA was still concerned that my heart is not beating as strong as it should, and the PSVT worried me just because it feels so darn freaky. It did the up and down the elevator for a few minutes last night, but no rotation of my heart so that was a very GOOD thing.
Chest pain 1-8. 1=no pain. 8=greatest pain felt.
Records are for the date, time, pain on a 1-8 scale, and any notes.
7/3
7 AM
Woke up.
2
7:15 AM
Got up to go to the bathroom and go downstairs.
3
Face and eye area swollen. Slightly out of breath and tired.
7:30
Called Dr. Ruscetti and the ER nurse. Ruscetti didn't give a fat rat's a$$. But I'm scared.
3
Tired.
8:45
Went upstairs and laid in bed
2
Very tired. Out of breath and heart going fast at top of stairs. Laid down and chest pain went to minimal.
9:45AM
Showered/dressed
4-5
Cut shower short as chest pain increased. Running out of breath. Pressure in chest. Light headed and dizzy.
10 AM
Sat down
3
Pressure in chest. Going to take Ativan.
10:31
Still sitting down
5
Flash of pain down left arm, always on the underside of the arm.
10:35
Still sitting down.
3
Pain level went back to normal pain level.
11-12:30
Still sitting or laying down.
1-6
Stronger pain comes and goes, about 1-2 minutes each time. I’ll take the nitro when it feels like the pain will be consistent enough to tell if it was the nitro or if the pain settled down on its own. The pain does not seem worse while laying on either side or sitting on couch. Sometimes feels like I can feel my chest beat hard when lying on left side, beating felt on side of rib cage. Chest pain is consistently on the left side over the heart and ranges from tightness, to twinging, to constriction , to burning.
1:30
Sitting on couch
2-4
Chest pain off and on, with sharper pains going down left arm. Absolutely exhausted. First nap in a long time.
1:50
Went upstairs twice to clean up house.
2
Very difficult to breath. Lungs clear, but a lot of pressure and gasping for breath at the top and for a bit after.
5:30
Sitting on couch
4
Slept for a few minutes and took another ativan. Chest hurt for a bit, but settled back down to a 2.
Fell asleep on couch
2
Fell asleep and don’t remember star wars or almost any of Beowulf. Went upstairs and went to sleep.
9AM
Got up
1
Chest didn’t hurt.
7/4
9:15 AM
Sitting in chair
4
Chest didn’t hurt when woke up. Got dressed, fed cats, opened blinds downstairs. Out of breath like I’ve been running down the street warming up for a race. Chest pain started and is coming and going from 3 to 4, sometimes extending down left arm.
10AM
Sitting in chair
3
Still out of breath. Pain less, still going down left arm, but less frequently.
12 noon
Showered
3
Showered, put clothes away and pulse read 129. short of breath. Went down stairs to sit down again. And pulse dropped back down to 70s again.
12:30
Sitting down
3-4
Short, sharp, burning pain in left side of chest. Goes up, then goes down. Some sensations going down left arm.
1:34
Sitting down.
1
Pulse 58. very tired, but chest has only some pressure and no pain. Drinking juice. Not hungry last few days, and really not hungry today.
3 PM
Made cookies
1
Tired and slight pressure. Slightly out of breath, but no pain.
3:10
Cookies
4
Got back up to change out cookies, very out of breath like worked out plus some, chest pain. Don’t feel good.
3:13
Sitting down
2
Sat down and chest pain diminished. Pressure in chest, feels like asthma, but no wheezing, just that weird sensation.
6:30
Ate
1
Felt ok.
7:10 PM
Put dishes away
2
Felt really out of breath.
9
Sitting down
2
Went upstairs half an hour ago to talk to Mom on the phone, chest started hurting at about a 4. Laid back down to get it back down. Took an ativan.
11pm
Laying down
5
Watching tv. Have had multiple and random sharp chest pains on both left and right sides of chest. Main pressure is on left side. Goes from pain of 1 with pressure to a painful 5. Haven’t really moved from the couch for a while. Going to bed.
7/5
9AM
In bed
3
Chest pain went from 1 to pulses of 3. bed damp.
9:15
Got up
2
Got dressed, made bed, fed cats. Out of breath and tired. When out of breath felt like fluid in lungs. Then clears up. Lungs clearing up overall though. Don’t need inhaler like I did at all. Can’t take symbicort as it makes me nauseated.
12:30
On couch
3
Chest pain comes and goes. Some goes under arm. Some pressure. Very tired.
1:30
Folding laundry
3
Extremely short of breath. Chip asked what I was doing and I panted to talk with him as so short of breath. Got mad and told me to lay down. Took cards downstairs to sit down and sort into desk. Took shower and dressed. Found a lot of hair on the floor.
2:28
Sitting down
3
Shaky and extremely exhausted. Pain is burning and going to underside of left arm.
2:44
Sitting down
3
Resting heart rate is 89 to 94. Chip asked me to take it. Once with bp machine and once with wrist heart rate monitor.
2:58
Laying down
2
Heart rate 79. changing channels and felt nauseated a bit, hands and feet sweating, remote felt too heavy to keep holding. Just laid here for five minutes or so before felt better. Tired.
4:00
Went upstairs to put a few things away
2
Heart rate at 140, way out of breath. Dropped to 114 a minute later. 71 a few minutes after sitting down.
4:28
Sitting down
2
Tired, but better. Occasional strong calf cramp/pain.
6 PM
Moving around
5
Brief pain in chest with tightness. Heart rate 150.
8
Laying down
2
Heart rate 79 to 84. no reason why. took ativan.
11PM
Going to bed.
2
Heart rate 70. tired and ready for bed.
7/6
8:30
Woke up
3
Chest pain upon waking and laying in bed for about 15 minutes. It was obvious I sweat during the night.
9:15
Took shower
3
Took shower, did hair. Pulse rate at 148 and very winded.
9:30
Got paper
3
Very winded. Pulse rate 146.
10:27
Sitting down
3
Heart rate 96. very tired and feel off. Haven’t been off couch for a while.
10:30
Laying down
3
Really don’t feel good. Stomach off, chest pain going down and staying down left arm. Felt light. Heart rate still in 90s. took ativan.
10:45
Took nitro
1-2
After a few minutes of feeling flush and warm, felt much, much better. Chest pain and arm pain less. Tired, but much less so. Resting heart rate 92. Pain gone most of the time, but flashes of it still come and go.
11:31
Sitting down
1
Feel best I’ve felt for a while. Slightly headachy, but told expect that.
12:30
Sitting down
2
Pain in left side, down arm. Don’t feel so tired I can’t move, but still ready for a nap. Resting heart rate 90. sweaty palms and feet off and on.
1:00
Sitting down
2
Resting heart rate 75. tired. Pain on left side of chest and under arm.
1:52
Sitting down.
3
Heart rate 86.
6:20
Sitting down.
2
Took several hour long nap earlier. Feel ok, but a bit tired. Heart rate 76.
8:16
Laying down.
2
Resting heart rate 88. feel a bit off. Recently ate.
8:25
Sitting up.
2
Resting heart rate 109. bp is 96/64. chest tight, hard to breath. Feel weird. Took nitro.
8:41
Laying down
3
Had some chest pain spikes, pulse at 110 to 114 for a bit. Back down to 100. still feel off. Pain and pressure over left side, slightly down left arm.
8:55
Laying down
2
Pulse 86. feel better. pressure under left arm.
9:06
Sitting up.
2
Pulse 90. tired.
9:43
Laying down
2
Pulse 104. took ativan. Tired.
7/7
7 AM
Got up
3
Chest pain upon waking. Area under eyes mildly swollen.
7:30
Breakfast
3
Chest pain and going down arm. Noticed quite a few calf pain/sharp cramps yesterday, especially last night and now today.
8:29
Sitting down.
3
Chest pain and down arm and pressure over left side of chest. Tired.
8:33
Sitting down
3-4
Burning chest pain and under arm.
8:45
Chores
3
Like I’m running hard.
9:34
Sitting down
2
Heart rate 66
11:00
Showering, doing hair
4
Heart rate 173. got on knees to be able to finish curling hair. Took nitro tab.
Calf cramps all day.
7/8
All day
2-5
Woke up with chest pain, pressure. Pain/pressure worse shortly after exertion of any kind. Calf cramps all day.
8 PM
Standing after cooking
4
Sudden real pressure across chest, difficult to breath, odd sensation. Chest pain increased. Went upstairs and took nitro tab and laid down for a few minutes.
This entry is more for myself to document in one place all the records I've kept. This log is for the several days I tracked a lot of chest pain and other stuff I had going on before I ended up in the hospital. This also helps me remember this is NOT in my head. Note that the cardiologist didn't want to look at my notes (in my pretty Excel spreadsheet) and told me that he didn't think anything was going on with my heart. Fortunately, he started running tests anyway...The internal medicine PA was still concerned that my heart is not beating as strong as it should, and the PSVT worried me just because it feels so darn freaky. It did the up and down the elevator for a few minutes last night, but no rotation of my heart so that was a very GOOD thing.
Chest pain 1-8. 1=no pain. 8=greatest pain felt.
Records are for the date, time, pain on a 1-8 scale, and any notes.
7/3
7 AM
Woke up.
2
7:15 AM
Got up to go to the bathroom and go downstairs.
3
Face and eye area swollen. Slightly out of breath and tired.
7:30
Called Dr. Ruscetti and the ER nurse. Ruscetti didn't give a fat rat's a$$. But I'm scared.
3
Tired.
8:45
Went upstairs and laid in bed
2
Very tired. Out of breath and heart going fast at top of stairs. Laid down and chest pain went to minimal.
9:45AM
Showered/dressed
4-5
Cut shower short as chest pain increased. Running out of breath. Pressure in chest. Light headed and dizzy.
10 AM
Sat down
3
Pressure in chest. Going to take Ativan.
10:31
Still sitting down
5
Flash of pain down left arm, always on the underside of the arm.
10:35
Still sitting down.
3
Pain level went back to normal pain level.
11-12:30
Still sitting or laying down.
1-6
Stronger pain comes and goes, about 1-2 minutes each time. I’ll take the nitro when it feels like the pain will be consistent enough to tell if it was the nitro or if the pain settled down on its own. The pain does not seem worse while laying on either side or sitting on couch. Sometimes feels like I can feel my chest beat hard when lying on left side, beating felt on side of rib cage. Chest pain is consistently on the left side over the heart and ranges from tightness, to twinging, to constriction , to burning.
1:30
Sitting on couch
2-4
Chest pain off and on, with sharper pains going down left arm. Absolutely exhausted. First nap in a long time.
1:50
Went upstairs twice to clean up house.
2
Very difficult to breath. Lungs clear, but a lot of pressure and gasping for breath at the top and for a bit after.
5:30
Sitting on couch
4
Slept for a few minutes and took another ativan. Chest hurt for a bit, but settled back down to a 2.
Fell asleep on couch
2
Fell asleep and don’t remember star wars or almost any of Beowulf. Went upstairs and went to sleep.
9AM
Got up
1
Chest didn’t hurt.
7/4
9:15 AM
Sitting in chair
4
Chest didn’t hurt when woke up. Got dressed, fed cats, opened blinds downstairs. Out of breath like I’ve been running down the street warming up for a race. Chest pain started and is coming and going from 3 to 4, sometimes extending down left arm.
10AM
Sitting in chair
3
Still out of breath. Pain less, still going down left arm, but less frequently.
12 noon
Showered
3
Showered, put clothes away and pulse read 129. short of breath. Went down stairs to sit down again. And pulse dropped back down to 70s again.
12:30
Sitting down
3-4
Short, sharp, burning pain in left side of chest. Goes up, then goes down. Some sensations going down left arm.
1:34
Sitting down.
1
Pulse 58. very tired, but chest has only some pressure and no pain. Drinking juice. Not hungry last few days, and really not hungry today.
3 PM
Made cookies
1
Tired and slight pressure. Slightly out of breath, but no pain.
3:10
Cookies
4
Got back up to change out cookies, very out of breath like worked out plus some, chest pain. Don’t feel good.
3:13
Sitting down
2
Sat down and chest pain diminished. Pressure in chest, feels like asthma, but no wheezing, just that weird sensation.
6:30
Ate
1
Felt ok.
7:10 PM
Put dishes away
2
Felt really out of breath.
9
Sitting down
2
Went upstairs half an hour ago to talk to Mom on the phone, chest started hurting at about a 4. Laid back down to get it back down. Took an ativan.
11pm
Laying down
5
Watching tv. Have had multiple and random sharp chest pains on both left and right sides of chest. Main pressure is on left side. Goes from pain of 1 with pressure to a painful 5. Haven’t really moved from the couch for a while. Going to bed.
7/5
9AM
In bed
3
Chest pain went from 1 to pulses of 3. bed damp.
9:15
Got up
2
Got dressed, made bed, fed cats. Out of breath and tired. When out of breath felt like fluid in lungs. Then clears up. Lungs clearing up overall though. Don’t need inhaler like I did at all. Can’t take symbicort as it makes me nauseated.
12:30
On couch
3
Chest pain comes and goes. Some goes under arm. Some pressure. Very tired.
1:30
Folding laundry
3
Extremely short of breath. Chip asked what I was doing and I panted to talk with him as so short of breath. Got mad and told me to lay down. Took cards downstairs to sit down and sort into desk. Took shower and dressed. Found a lot of hair on the floor.
2:28
Sitting down
3
Shaky and extremely exhausted. Pain is burning and going to underside of left arm.
2:44
Sitting down
3
Resting heart rate is 89 to 94. Chip asked me to take it. Once with bp machine and once with wrist heart rate monitor.
2:58
Laying down
2
Heart rate 79. changing channels and felt nauseated a bit, hands and feet sweating, remote felt too heavy to keep holding. Just laid here for five minutes or so before felt better. Tired.
4:00
Went upstairs to put a few things away
2
Heart rate at 140, way out of breath. Dropped to 114 a minute later. 71 a few minutes after sitting down.
4:28
Sitting down
2
Tired, but better. Occasional strong calf cramp/pain.
6 PM
Moving around
5
Brief pain in chest with tightness. Heart rate 150.
8
Laying down
2
Heart rate 79 to 84. no reason why. took ativan.
11PM
Going to bed.
2
Heart rate 70. tired and ready for bed.
7/6
8:30
Woke up
3
Chest pain upon waking and laying in bed for about 15 minutes. It was obvious I sweat during the night.
9:15
Took shower
3
Took shower, did hair. Pulse rate at 148 and very winded.
9:30
Got paper
3
Very winded. Pulse rate 146.
10:27
Sitting down
3
Heart rate 96. very tired and feel off. Haven’t been off couch for a while.
10:30
Laying down
3
Really don’t feel good. Stomach off, chest pain going down and staying down left arm. Felt light. Heart rate still in 90s. took ativan.
10:45
Took nitro
1-2
After a few minutes of feeling flush and warm, felt much, much better. Chest pain and arm pain less. Tired, but much less so. Resting heart rate 92. Pain gone most of the time, but flashes of it still come and go.
11:31
Sitting down
1
Feel best I’ve felt for a while. Slightly headachy, but told expect that.
12:30
Sitting down
2
Pain in left side, down arm. Don’t feel so tired I can’t move, but still ready for a nap. Resting heart rate 90. sweaty palms and feet off and on.
1:00
Sitting down
2
Resting heart rate 75. tired. Pain on left side of chest and under arm.
1:52
Sitting down.
3
Heart rate 86.
6:20
Sitting down.
2
Took several hour long nap earlier. Feel ok, but a bit tired. Heart rate 76.
8:16
Laying down.
2
Resting heart rate 88. feel a bit off. Recently ate.
8:25
Sitting up.
2
Resting heart rate 109. bp is 96/64. chest tight, hard to breath. Feel weird. Took nitro.
8:41
Laying down
3
Had some chest pain spikes, pulse at 110 to 114 for a bit. Back down to 100. still feel off. Pain and pressure over left side, slightly down left arm.
8:55
Laying down
2
Pulse 86. feel better. pressure under left arm.
9:06
Sitting up.
2
Pulse 90. tired.
9:43
Laying down
2
Pulse 104. took ativan. Tired.
7/7
7 AM
Got up
3
Chest pain upon waking. Area under eyes mildly swollen.
7:30
Breakfast
3
Chest pain and going down arm. Noticed quite a few calf pain/sharp cramps yesterday, especially last night and now today.
8:29
Sitting down.
3
Chest pain and down arm and pressure over left side of chest. Tired.
8:33
Sitting down
3-4
Burning chest pain and under arm.
8:45
Chores
3
Like I’m running hard.
9:34
Sitting down
2
Heart rate 66
11:00
Showering, doing hair
4
Heart rate 173. got on knees to be able to finish curling hair. Took nitro tab.
Calf cramps all day.
7/8
All day
2-5
Woke up with chest pain, pressure. Pain/pressure worse shortly after exertion of any kind. Calf cramps all day.
8 PM
Standing after cooking
4
Sudden real pressure across chest, difficult to breath, odd sensation. Chest pain increased. Went upstairs and took nitro tab and laid down for a few minutes.
Rollercoaster
I've never been a big fan of rollercoasters. I usually go to the fair or festival and eat my way through it while people watching and visiting the animal barns and trying to pet everything. So likening this experience to riding a rollercoaster is not a compliment. I don't know from one hour to another how I'm going to feel. I woke up this morning and it was like wading through molassas in the winter or what I imagine it's like if you had several big ol' slugs of Dimetapp (grape, it's my favorite). I had a good nap around mid-day while Mom was making lasagna. That part was nice and reminiscent of childhood. I finally got up and showered and managed to sweat all over the place by the time I was ready to take our truck for it's oil change (9000 miles past due I might add). I swear if they tell me I'm perimenopausal, too, I would just kiss them as long as they gave me something for it. My new PA asked me what one single thing I would like to have fixed in all of this and she assumed being tired was my biggest grip. Well, it IS very life altering going around in a foggy cloud of tired. But it's also frustrating to walk around power surging off and on all day, too. They think that is probably linked to the thyroid or adrenals, and I'm ready to get this all figured out. I think the biggest sign I'll be fine is when I feel refreshed when I wake up and I am back to feeling like a lizard and loving the heat again. Not much worse than living in the South and wanting to sit on an ice cube all day just so you won't sweat anymore, or dreaming of January and leaving the windows open.
Then I started feeling better this afternoon. So good that I actually drove the truck from one store to another and lifted some heavy things in the store I wouldn't have even tried to lift just a few days ago. So when we got home from the store I hurried around to get as many things done as I could while I still had the energy. It was wonderful! Chip got home and we all had some of Mom's incredible lasagna. I went for a short walk with Mom, too. I started thinking, like I always do when I have an up moment, that maybe this really was all in my head. Maybe the old doctor's were right and it's just in my head.
Then the fog hit. It only lasted about 30 seconds to a minute, but it was a scary reminder of my hospital visit two weeks ago. It was the heavy helmet lowering over my head and onto my shoulders. My brainwaves slowed to a dull blip and I knew that this afternoon was just a temporary and wonderful respite from this whole ordeal, my own, personal rollercoaster ride.
Then I started feeling better this afternoon. So good that I actually drove the truck from one store to another and lifted some heavy things in the store I wouldn't have even tried to lift just a few days ago. So when we got home from the store I hurried around to get as many things done as I could while I still had the energy. It was wonderful! Chip got home and we all had some of Mom's incredible lasagna. I went for a short walk with Mom, too. I started thinking, like I always do when I have an up moment, that maybe this really was all in my head. Maybe the old doctor's were right and it's just in my head.
Then the fog hit. It only lasted about 30 seconds to a minute, but it was a scary reminder of my hospital visit two weeks ago. It was the heavy helmet lowering over my head and onto my shoulders. My brainwaves slowed to a dull blip and I knew that this afternoon was just a temporary and wonderful respite from this whole ordeal, my own, personal rollercoaster ride.
Tuesday, August 4, 2009
Happy with new medical 'hub'
August 4, 2009
Woke up pretty fuzzy this morning. Mom drove me to the cardiologist's office and my blood pressure was 88/60. That might explain it. Hard to wake up very well when the blood isn't pumping anywhere very fast. Apparently the bistolic medicine I am on to control the PSVT can lower your blood pressure below where they want it so we'll see what the doc says when he finds out. All I knew is that my low blood pressure was resolved when I went to the checkout and they told me I owed them $30 for a nurse's aid taking my blood pressure. Goodness Grief, I could have taken it at home and called it in for that. Won't be doing that anymore, they can just blend that check in with the other five thousand, three hundred twenty two doctors visits I have coming up in the next year.
Mom and I sat at McDonald's this morning as I had another primary care doctor's visit after my cardiologist (please may I have your money) visit. She really helped me clarify why I was going to see her as I am getting fairly confused about why I'm even seeing a primary care person with all the other visits. I wanted to back out, but figured that if the head of cardiology personally recommended her as his own doctor, then she must be pretty good and I needed to keep the appintment. So I made a list, most of which was to discuss the lack of trust my other doctors have had in me, which made me not trust them. It's a lack of trusting what I say and not believing it is anything other than stress, depression, anxiety, or some other disorder of the female condition aka in my head or a physical manifestation of what's in my head. It also included not wanting to take Zoloft because I'm not depressed. I've had my last (read former) three primary doctors try to push anti-anxiety or depression medication down my throat when, quite frankly, I'm the happiest I've ever been IN SPITE of feeling like a crap sandwich. And there I was in the hospital discussing life insurance and my will with my husband because I really thought I was going to die and I was still concerned that I had missed knee hair the last time I shaved and that I hadn't been able to get the house organized before I left the mess to Chip. Doesn't really sound like a depressed person to me. Obsessive yes, depressed NO.
Anyways, Mom and I go into my new doctor's office and there I am, bright eyed and bushy tailed, ready to meet someone who was going to be my new medical hub. Someone who would look at everything all the specialists were saying and what I was saying and would help me put the pieces of the puzzle together or point me in the direction I needed to go next in a helpful way. And someone I was ready to chew up and spit out if they acted like my former docs. And in walks a physicians assistant. With the same name as the doctor I was supposed to have. That my cardiologist recommended. And I about gave up before we even started because I figured that if a doctor wouldn't take me seriously and couldn't figure any of this out, then how could a PA. Then she spoke. And asked questions. And took me back years into my history. And she actually read my medical records. And she listened. And she HEARD me. And before I knew it I was in love with my new medical 'hub', someone I am going to trust to walk with me through all this confusing and frustrating mess. Someone who was going to actually confer with my endocrinologist and was going to really look through all my records outside of our appointment. Sigh, life is good again.
Ms. Finnegan thinks there is something going on besides my thyroid, even if it does end up being the medullary thyroid cancer. She started discussing my adrenal function, which is something I've been pointedly asking about since the cortisol test to test my adrenal glands flipped the crisis switch and made me chatter like a chipmunk for 40 hours. She said my reaction was highly abnormal and makes her think I do need to leave the local Wilmington area in search of another specialist who knows much more about rare and unusual adrenal or other endocrine type disfunctions. She said my endocrinologist is really great and thinks I need to heed his call to find someone more knowledgeable about things past diabetes and thyroid problems. She is going to call Dr. Ley to discuss this and my test/biopsy results before my next appointment with her on the 18th. THAT surprised me, too. She pulled out the calendar to see when the biopsy would be, and planned to discuss all this with the doc and have a direction ready to discuss by my appt. She has shared patients with Dr. Ley before so has a good working relationship with him, and believes that sending me up to UNC (University of North Carolina at Chapel Hill) will probably be the best answer.
So knock me over with a leaf. I didn't have to lecture or get mad or anything...and all those emotions I had stored up and ready to dump on somebody for all the other doctors that treated me so poorly...I finally had the nerve to tell someone to knock it off in a not so subtle way...and she was incredibly smart and with it. Well, ok. I can handle that! The human grenade is diffused and the pin put back in. Don't you love it when people let you be nice.
As for the last few days since my last post, I've been on the upswing. I cleaned up our master bed and bath yesterday and while it made me very tired, I was equally as proud I managed to do something productive. It's been 3 weeks since the last time I was able to do that. I still have chest pain every day, but it's just a fraction of what it has been. No nitroglycerin needed thank goodness. And I've only had 3 episodes of the PSVT since last Sunday. The last 2 have been minor. Someone asked me what they felt like and it's hard to explain. But picture that your heart is an eggplant on a thick stem. Twist the eggplant so that the front is now in the back. That's what my heart feels like. That somebody has grabbed it and twisted it and I can feel the stem twist and the front is now in the back. And it's done while messing with a super fast elevator so the heart is plunging up and down. Now add that it's hard to breathe, you are sweating, and your chest and arm hurts. And they wonder why I get upset when it happens. Really.
Anyhoo, enough for now. Time for a nap. Yesterday and this morning tuckered me out. Until next time...
Woke up pretty fuzzy this morning. Mom drove me to the cardiologist's office and my blood pressure was 88/60. That might explain it. Hard to wake up very well when the blood isn't pumping anywhere very fast. Apparently the bistolic medicine I am on to control the PSVT can lower your blood pressure below where they want it so we'll see what the doc says when he finds out. All I knew is that my low blood pressure was resolved when I went to the checkout and they told me I owed them $30 for a nurse's aid taking my blood pressure. Goodness Grief, I could have taken it at home and called it in for that. Won't be doing that anymore, they can just blend that check in with the other five thousand, three hundred twenty two doctors visits I have coming up in the next year.
Mom and I sat at McDonald's this morning as I had another primary care doctor's visit after my cardiologist (please may I have your money) visit. She really helped me clarify why I was going to see her as I am getting fairly confused about why I'm even seeing a primary care person with all the other visits. I wanted to back out, but figured that if the head of cardiology personally recommended her as his own doctor, then she must be pretty good and I needed to keep the appintment. So I made a list, most of which was to discuss the lack of trust my other doctors have had in me, which made me not trust them. It's a lack of trusting what I say and not believing it is anything other than stress, depression, anxiety, or some other disorder of the female condition aka in my head or a physical manifestation of what's in my head. It also included not wanting to take Zoloft because I'm not depressed. I've had my last (read former) three primary doctors try to push anti-anxiety or depression medication down my throat when, quite frankly, I'm the happiest I've ever been IN SPITE of feeling like a crap sandwich. And there I was in the hospital discussing life insurance and my will with my husband because I really thought I was going to die and I was still concerned that I had missed knee hair the last time I shaved and that I hadn't been able to get the house organized before I left the mess to Chip. Doesn't really sound like a depressed person to me. Obsessive yes, depressed NO.
Anyways, Mom and I go into my new doctor's office and there I am, bright eyed and bushy tailed, ready to meet someone who was going to be my new medical hub. Someone who would look at everything all the specialists were saying and what I was saying and would help me put the pieces of the puzzle together or point me in the direction I needed to go next in a helpful way. And someone I was ready to chew up and spit out if they acted like my former docs. And in walks a physicians assistant. With the same name as the doctor I was supposed to have. That my cardiologist recommended. And I about gave up before we even started because I figured that if a doctor wouldn't take me seriously and couldn't figure any of this out, then how could a PA. Then she spoke. And asked questions. And took me back years into my history. And she actually read my medical records. And she listened. And she HEARD me. And before I knew it I was in love with my new medical 'hub', someone I am going to trust to walk with me through all this confusing and frustrating mess. Someone who was going to actually confer with my endocrinologist and was going to really look through all my records outside of our appointment. Sigh, life is good again.
Ms. Finnegan thinks there is something going on besides my thyroid, even if it does end up being the medullary thyroid cancer. She started discussing my adrenal function, which is something I've been pointedly asking about since the cortisol test to test my adrenal glands flipped the crisis switch and made me chatter like a chipmunk for 40 hours. She said my reaction was highly abnormal and makes her think I do need to leave the local Wilmington area in search of another specialist who knows much more about rare and unusual adrenal or other endocrine type disfunctions. She said my endocrinologist is really great and thinks I need to heed his call to find someone more knowledgeable about things past diabetes and thyroid problems. She is going to call Dr. Ley to discuss this and my test/biopsy results before my next appointment with her on the 18th. THAT surprised me, too. She pulled out the calendar to see when the biopsy would be, and planned to discuss all this with the doc and have a direction ready to discuss by my appt. She has shared patients with Dr. Ley before so has a good working relationship with him, and believes that sending me up to UNC (University of North Carolina at Chapel Hill) will probably be the best answer.
So knock me over with a leaf. I didn't have to lecture or get mad or anything...and all those emotions I had stored up and ready to dump on somebody for all the other doctors that treated me so poorly...I finally had the nerve to tell someone to knock it off in a not so subtle way...and she was incredibly smart and with it. Well, ok. I can handle that! The human grenade is diffused and the pin put back in. Don't you love it when people let you be nice.
As for the last few days since my last post, I've been on the upswing. I cleaned up our master bed and bath yesterday and while it made me very tired, I was equally as proud I managed to do something productive. It's been 3 weeks since the last time I was able to do that. I still have chest pain every day, but it's just a fraction of what it has been. No nitroglycerin needed thank goodness. And I've only had 3 episodes of the PSVT since last Sunday. The last 2 have been minor. Someone asked me what they felt like and it's hard to explain. But picture that your heart is an eggplant on a thick stem. Twist the eggplant so that the front is now in the back. That's what my heart feels like. That somebody has grabbed it and twisted it and I can feel the stem twist and the front is now in the back. And it's done while messing with a super fast elevator so the heart is plunging up and down. Now add that it's hard to breathe, you are sweating, and your chest and arm hurts. And they wonder why I get upset when it happens. Really.
Anyhoo, enough for now. Time for a nap. Yesterday and this morning tuckered me out. Until next time...
Friday, July 31, 2009
Oh good Lord, Give me patience
July 28, 2009
I just got the call from the endocrinologist office and my thyroid biopsy for the two nodules is scheduled for August 12. Are you kidding me??? I have become pretty laid back and go with the flow, especially with moving to the beach. But this is absolutely ridiculous. It's like putting a wet cat into a paper bag, shaking it, then telling the cat to 'stay'. They said I had to wait 5 days anyway because the cardiologist has me on aspirin and I have to stop it 5 before they stick me with the biopsy needles. But I learned my math well and if I don't take the aspirin starting tomorrow, that puts me at Thursday.
I feel pretty decent today and walked down to the beach and back while looking more my age than the last time. Earlier this week it was like 'look at the 100 year-old. good for her!' I hope I continue to feel well while Mom is here. I'd love to pick out paint for our bedroom and at least dream I get to paint it soon. I'd rather spend time enjoying our time together than spending more time in the hospital getting to know the personal details of my roommates.
Also found out that my uncle's daughter has lots of thyroid problems, so maybe the general doc should have listened when I kept telling them my uncle had thyroid cancer and we have thyroid problems on my Dad's mom's side of the family, scattered all over. But that would require it not to be stress or depression. I digress and it's actually been a good day so I'll sign off now and get ready to enjoy a tasty steak...since it's not my heart :)
I just got the call from the endocrinologist office and my thyroid biopsy for the two nodules is scheduled for August 12. Are you kidding me??? I have become pretty laid back and go with the flow, especially with moving to the beach. But this is absolutely ridiculous. It's like putting a wet cat into a paper bag, shaking it, then telling the cat to 'stay'. They said I had to wait 5 days anyway because the cardiologist has me on aspirin and I have to stop it 5 before they stick me with the biopsy needles. But I learned my math well and if I don't take the aspirin starting tomorrow, that puts me at Thursday.
I feel pretty decent today and walked down to the beach and back while looking more my age than the last time. Earlier this week it was like 'look at the 100 year-old. good for her!' I hope I continue to feel well while Mom is here. I'd love to pick out paint for our bedroom and at least dream I get to paint it soon. I'd rather spend time enjoying our time together than spending more time in the hospital getting to know the personal details of my roommates.
Also found out that my uncle's daughter has lots of thyroid problems, so maybe the general doc should have listened when I kept telling them my uncle had thyroid cancer and we have thyroid problems on my Dad's mom's side of the family, scattered all over. But that would require it not to be stress or depression. I digress and it's actually been a good day so I'll sign off now and get ready to enjoy a tasty steak...since it's not my heart :)
why I started this blog
July 31, 2009
I am blogging about this journey to help everyone keep up to date with what is going on and to help me 'deal' with the frustrations I am starting to feel, as well as the inner pissy that keeps jumping on board with crazy doctors and not feeling well. After two months of acutely not feeling right and having no answers, I am now on a quest to find out 'what's wrong with me'. So far I've been told it's stress, depression, anxiety, sleep deprivation, etc. There is no way it's my thryoid, heart, etc. So far they have found a problem with my heart and my thyroid. I don't want to feel vindicated and a good friend of mine says I don't want a tombstone that reads, "I told you Iwas sick". But I'm petty and keep yelling at the doctors who aren't here that I told them something was wrong. I am sure the heart is linked with the other issues we don't understand, but since the cardiologist didn't think it was my heart in the first place, I'll lay low for a little while. Until another test and another day...
I am blogging about this journey to help everyone keep up to date with what is going on and to help me 'deal' with the frustrations I am starting to feel, as well as the inner pissy that keeps jumping on board with crazy doctors and not feeling well. After two months of acutely not feeling right and having no answers, I am now on a quest to find out 'what's wrong with me'. So far I've been told it's stress, depression, anxiety, sleep deprivation, etc. There is no way it's my thryoid, heart, etc. So far they have found a problem with my heart and my thyroid. I don't want to feel vindicated and a good friend of mine says I don't want a tombstone that reads, "I told you Iwas sick". But I'm petty and keep yelling at the doctors who aren't here that I told them something was wrong. I am sure the heart is linked with the other issues we don't understand, but since the cardiologist didn't think it was my heart in the first place, I'll lay low for a little while. Until another test and another day...
Hmmmmm
July 31, 2009
The endocrinologist asked what type of thyroid cancer my uncle had at 19. Tom asked his doctor and it is medullary thyroid cancer, which can be familial/genetic (25% chance). Fingers and toes crossed it isn't, but who knows at this point...
The endocrinologist asked what type of thyroid cancer my uncle had at 19. Tom asked his doctor and it is medullary thyroid cancer, which can be familial/genetic (25% chance). Fingers and toes crossed it isn't, but who knows at this point...
Maybe answers, then again, maybe not
July 30, 2009
Went to the neurologist this morning. Boris (he is Russian) and I didn’t communicate so well and we went around again as with all my other docs that I am not depressed, stressed out, or lacking in sleep, and that my shortness of breath is not me hyperventilating. We also argued over whether I actually had sleep apnea accurately diagnosed several years ago because I have a skinny neck and didn’t snore. If it was good enough for blue cross insurance, it’s good enough for me. Anyways, I will be having a muscle weakness test on the 10th, but in the mean time found out one of the samples he got from me was for a drug screening so I’m not so sure we have much else to discuss. I personally think he should go back to Russia.
The endocrinologist had the maybe answers/maybe no answers. All the tests from the bloodletting from the week before came back normal except for one. My calcitonin levels were 6.5. Normal high is 5.0. People generally don’t have symptoms until it is in the 100s. Calcitonin is used as a marker for medullary thyroid cancer so he performed an ultrasound on my thyroid. He said ‘you can watch’, but when I turned my head to watch the screen he said ‘not you’ and proceeded to let Kelli see everything. And I couldn’t talk. So I sat there with ultrasound gel dripping down my neck, I couldn’t see anything or move, and I couldn’t speak for a good 20 minutes. Pure torture. Dr. Ley did find one nodule that had a very active blood supply so will be getting a biopsy of that in the hospital next week. The nodule is .2 inches. Soooo with the calcitonin levels being so low and the nodule so small, either I’m a super-sensitive canary or it isn’t really anything. It could explain everything, but he looked rather dubious that this is the answer. He is like a gentle grandpa who holds his cards close to his chest and we couldn’t get him to crack and give us any more information, but we were grateful he spent an hour with us.
Mom will be here next week for the biopsy and will be here for the muscle test on the 10th. I’ll send out an email when we hear anything or Boris has managed to send me to rehab.
Prayers and funny emails to keep me laughing are highly appreciated right now.
Went to the neurologist this morning. Boris (he is Russian) and I didn’t communicate so well and we went around again as with all my other docs that I am not depressed, stressed out, or lacking in sleep, and that my shortness of breath is not me hyperventilating. We also argued over whether I actually had sleep apnea accurately diagnosed several years ago because I have a skinny neck and didn’t snore. If it was good enough for blue cross insurance, it’s good enough for me. Anyways, I will be having a muscle weakness test on the 10th, but in the mean time found out one of the samples he got from me was for a drug screening so I’m not so sure we have much else to discuss. I personally think he should go back to Russia.
The endocrinologist had the maybe answers/maybe no answers. All the tests from the bloodletting from the week before came back normal except for one. My calcitonin levels were 6.5. Normal high is 5.0. People generally don’t have symptoms until it is in the 100s. Calcitonin is used as a marker for medullary thyroid cancer so he performed an ultrasound on my thyroid. He said ‘you can watch’, but when I turned my head to watch the screen he said ‘not you’ and proceeded to let Kelli see everything. And I couldn’t talk. So I sat there with ultrasound gel dripping down my neck, I couldn’t see anything or move, and I couldn’t speak for a good 20 minutes. Pure torture. Dr. Ley did find one nodule that had a very active blood supply so will be getting a biopsy of that in the hospital next week. The nodule is .2 inches. Soooo with the calcitonin levels being so low and the nodule so small, either I’m a super-sensitive canary or it isn’t really anything. It could explain everything, but he looked rather dubious that this is the answer. He is like a gentle grandpa who holds his cards close to his chest and we couldn’t get him to crack and give us any more information, but we were grateful he spent an hour with us.
Mom will be here next week for the biopsy and will be here for the muscle test on the 10th. I’ll send out an email when we hear anything or Boris has managed to send me to rehab.
Prayers and funny emails to keep me laughing are highly appreciated right now.
Feel better today.
July 28, 2009
Finally feel a little better today. Kelli talked me into going out to lunch since I was a little more bright eyed this morning and I enjoyed myself. Nice being out of the house. After lunch, I didn’t feel up to walking into Kohl’s and decided to rest in the car while Kelli dropped off my bill. Got plenty of time to do that as she decided to try on shoes and a shirt. At least she left the car running and the shoes and shirt really are cute.
The cardiologist decided they weren’t that worried with the low heart ejection rate since the heart looked great when they went in to look at it, but they are concerned about the PSVT, which is a type of tachycardia, which is a long word for rapid heart beat and arrhythmia. It generally isn’t life limiting unless you have another heart condition, but when it happens it feels like a major panic attack and can eventually cause heart failure in some people. Since my ejection fraction is already low, they are trying to control it. I appreciate that since I feel like I’m at the end every time it happens. At this point they don’t know if it’s related to the other stuff or not. But at least I know why my heart feels like it’s trying to jump into the next county when it happens. Two answers down, one to go.
I’m going to the neurologist and endocrinologist on Thursday. I’m hoping the endocrinologist has some answers since the prednisone he gave me is working ( I can feel it work within about half an hour each morning and evening so something is going on). Kelli jokes that I should go to see an ornithologist or botanist, too, since I have so many ologists working on this, but unless I grow wings or leaves it probably won’t do much good. I feel like the heart and other stuff are going hand in hand, but I’m only a biologist and am not qualified to say anything other than ‘ouch, quit it’ and ‘please, may I have another blood draw’.
I’ll update when I know more later this week. Keep the prayers coming because the answers we are looking for are starting to come in and when they come in it’s for stuff I can happily deal with.
Finally feel a little better today. Kelli talked me into going out to lunch since I was a little more bright eyed this morning and I enjoyed myself. Nice being out of the house. After lunch, I didn’t feel up to walking into Kohl’s and decided to rest in the car while Kelli dropped off my bill. Got plenty of time to do that as she decided to try on shoes and a shirt. At least she left the car running and the shoes and shirt really are cute.
The cardiologist decided they weren’t that worried with the low heart ejection rate since the heart looked great when they went in to look at it, but they are concerned about the PSVT, which is a type of tachycardia, which is a long word for rapid heart beat and arrhythmia. It generally isn’t life limiting unless you have another heart condition, but when it happens it feels like a major panic attack and can eventually cause heart failure in some people. Since my ejection fraction is already low, they are trying to control it. I appreciate that since I feel like I’m at the end every time it happens. At this point they don’t know if it’s related to the other stuff or not. But at least I know why my heart feels like it’s trying to jump into the next county when it happens. Two answers down, one to go.
I’m going to the neurologist and endocrinologist on Thursday. I’m hoping the endocrinologist has some answers since the prednisone he gave me is working ( I can feel it work within about half an hour each morning and evening so something is going on). Kelli jokes that I should go to see an ornithologist or botanist, too, since I have so many ologists working on this, but unless I grow wings or leaves it probably won’t do much good. I feel like the heart and other stuff are going hand in hand, but I’m only a biologist and am not qualified to say anything other than ‘ouch, quit it’ and ‘please, may I have another blood draw’.
I’ll update when I know more later this week. Keep the prayers coming because the answers we are looking for are starting to come in and when they come in it’s for stuff I can happily deal with.
Hyper as anything...
July 24, 2009
Hello everyone. Back home after being taken to the emergency room by ambulance on Monday. Since there have been lots of questions, I’ll give the details here. If you want to skip the details and get to the point, I’m better at this minute, but the docs have no clue what is wrong, and are treating me like an episode of diagnosis x or mystery diagnosis on the cable channels. I’ll send another email when I know more than that.
As for the details…I had significant muscle weakness and felt pretty strange all over and barely managed to call 911 on Monday morning. When the folks got here they heard my slurred and slow speech and the fact I couldn’t really move myself and started asking where my drugs were. ??? They thought they were onto something when they found powder on a cutting board next to a pill bottle. Then they figured out it was written from coastal animal hospital for my cat and the powder was from where I had been trying to cut a pill into tiny pieces for him. Hey, I tried to tell them I wasn’t on drugs except for a nitro tablet I took 45 minutes earlier. They got me to the emergency room eventually and I spent about the next 12 hours baffling the doctors with the weakness and heart pain, etc. They finally admitted me due to an abnormal echocardiogram and stress test from the week before. The EMS guys saw that my drug screen came back clean when they brought in another patient and then and kept coming back to check on me so I’ll have to go say hi when we figure all this out. Once they knew there was actually something wrong they were sweet guys. Guess they get a lot of pill poppers around here.
So far I have a cardiac ejection fraction (amount blood pumps out of a chamber) of 40%. A healthy person averages 58%, with the low being 50% so they are pretty concerned my heart muscle is so weak. They have also continued to confirm I have some sort of tachycardia, which is a rapid heartbeat. If I stand up it goes to 100+ beats per minute, and shoots up to 140+ beats with any exertion, which includes brushing my teeth or curling my hair (that was my record of 173. I always knew trying to look good took a lot of energy but geez). I also have sporadic muscle weakness to the point I can’t really speak or move among other things. Kelli said it’s like watching lettuce wilt. Nice. So far, I have a pulmonologist who said my lungs are fine (Yay), but can’t explain the shortness of breath or trouble breathing as I describe it, a cardiologist who said things are not fine with my heart, but that my heart looks extremely healthy and the problems are not stemming from the heart. No plaque or anything what so ever which means I do not have to go on a low fat diet and will continue to use butter and eat bacon. I now have an endocrinologist who has joined in the bloodletting at the hospital and caused me to hide my arms under the blanket every time I think I hear the lab cart coming down the hall. I’m not kidding. All of his tests have come up negative, so he ordered several more as there were a few open veins left and will have a bunch of other results coming in next week. One of his tests is the reason I’m home, though. They gave me a bunch of something to make my adrenal glands make cortisol and it was like a switch turned on almost instantaneously (though he said the test didn’t show anything he was looking for). I really haven’t stopped chattering since 4:30 yesterday afternoon. I’m hoping the rush will wear off soon so I can sleep, but am so excited I feel the best I’ve felt in weeks. Unfortunately, like Kelli asked, it’s just a bandaid over what is really wrong and they don’t know what has happened, but they are happy to let me get home to rest ( and shower, hellooo) before more testing next week. They have also called in a neurologist so I’ll basically be having the most thorough and expensive physical of my life. Chip is just threatening to bring out the leaches and have it over with.
So Kelli will be staying with me in case I digress and have to go back. They want me back on a chest monitor if the chest pains become significant again or I have trouble breathing again or I get really weak like before. Can’t drive in case one of the episodes comes back. The endocrinologist will have all of his results back for my appt. late on Thursday and they will also perform (finally, and I MEAN finally) a scan on my thyroid to check for a nodule to ensure it isn’t hyperthyroid. Not sure when the neurologist appt. will be. The brain MRI already came back fine and confirmed that other than my weird personality, all is well up there. If these last two specialists can’t figure it out, they will most likely send me to the National Institute of Health or the Mayo Clinic. They are baffled as of yet, but I remain hopeful the medication will hold off the worst of what was going on and I can stay home until they figure it out. The good thing is that after 7 weeks of being sick and 5 weeks of jumping up and down and saying I was getting really sick, they are finally listening and have assured me that the first two folks who told me it was stress and the next two who told me it was muscle cramps were wrong. Nothing like breaking in new doctors in a new town with something so weird.
I really appreciate all the help and words of support and prayers and helicoptering Chip and I have received. I couldn’t have gotten through the past 7 weeks without Chip. He has been my absolute rock and God truly blessed me when he sent Cupid down our way. I’m also grateful for kelli coming down and helping out and Mom being on stand-by. I am in great hands. Kelli is my little Chihuahua (cute, barks, AND bites when needed) while Chip is my bulldog (pretty quiet but when he bites he might not give your arm back). The docs think it’s funny, but get the point. Shout outs also to Susan for picking up our great big box of vegetables from the farm (the carrots are my fav) and Darlene’s zucchini bread. It is divine and the basket of goodies were perfect. The chapstick was a brilliant idea. You and Sherm’s visit were wonderfully distracting from my roommate and her quest for her shoes (my 4th roomie wanted her socks, I kid you not). And thanks, Candy, for the email. Who knew you could send a personal email to the hospital and have it delivered.
Signing off for now. Haven’t slept since Wednesday night. Where was this stuff when I was studying for finals…
Hello everyone. Back home after being taken to the emergency room by ambulance on Monday. Since there have been lots of questions, I’ll give the details here. If you want to skip the details and get to the point, I’m better at this minute, but the docs have no clue what is wrong, and are treating me like an episode of diagnosis x or mystery diagnosis on the cable channels. I’ll send another email when I know more than that.
As for the details…I had significant muscle weakness and felt pretty strange all over and barely managed to call 911 on Monday morning. When the folks got here they heard my slurred and slow speech and the fact I couldn’t really move myself and started asking where my drugs were. ??? They thought they were onto something when they found powder on a cutting board next to a pill bottle. Then they figured out it was written from coastal animal hospital for my cat and the powder was from where I had been trying to cut a pill into tiny pieces for him. Hey, I tried to tell them I wasn’t on drugs except for a nitro tablet I took 45 minutes earlier. They got me to the emergency room eventually and I spent about the next 12 hours baffling the doctors with the weakness and heart pain, etc. They finally admitted me due to an abnormal echocardiogram and stress test from the week before. The EMS guys saw that my drug screen came back clean when they brought in another patient and then and kept coming back to check on me so I’ll have to go say hi when we figure all this out. Once they knew there was actually something wrong they were sweet guys. Guess they get a lot of pill poppers around here.
So far I have a cardiac ejection fraction (amount blood pumps out of a chamber) of 40%. A healthy person averages 58%, with the low being 50% so they are pretty concerned my heart muscle is so weak. They have also continued to confirm I have some sort of tachycardia, which is a rapid heartbeat. If I stand up it goes to 100+ beats per minute, and shoots up to 140+ beats with any exertion, which includes brushing my teeth or curling my hair (that was my record of 173. I always knew trying to look good took a lot of energy but geez). I also have sporadic muscle weakness to the point I can’t really speak or move among other things. Kelli said it’s like watching lettuce wilt. Nice. So far, I have a pulmonologist who said my lungs are fine (Yay), but can’t explain the shortness of breath or trouble breathing as I describe it, a cardiologist who said things are not fine with my heart, but that my heart looks extremely healthy and the problems are not stemming from the heart. No plaque or anything what so ever which means I do not have to go on a low fat diet and will continue to use butter and eat bacon. I now have an endocrinologist who has joined in the bloodletting at the hospital and caused me to hide my arms under the blanket every time I think I hear the lab cart coming down the hall. I’m not kidding. All of his tests have come up negative, so he ordered several more as there were a few open veins left and will have a bunch of other results coming in next week. One of his tests is the reason I’m home, though. They gave me a bunch of something to make my adrenal glands make cortisol and it was like a switch turned on almost instantaneously (though he said the test didn’t show anything he was looking for). I really haven’t stopped chattering since 4:30 yesterday afternoon. I’m hoping the rush will wear off soon so I can sleep, but am so excited I feel the best I’ve felt in weeks. Unfortunately, like Kelli asked, it’s just a bandaid over what is really wrong and they don’t know what has happened, but they are happy to let me get home to rest ( and shower, hellooo) before more testing next week. They have also called in a neurologist so I’ll basically be having the most thorough and expensive physical of my life. Chip is just threatening to bring out the leaches and have it over with.
So Kelli will be staying with me in case I digress and have to go back. They want me back on a chest monitor if the chest pains become significant again or I have trouble breathing again or I get really weak like before. Can’t drive in case one of the episodes comes back. The endocrinologist will have all of his results back for my appt. late on Thursday and they will also perform (finally, and I MEAN finally) a scan on my thyroid to check for a nodule to ensure it isn’t hyperthyroid. Not sure when the neurologist appt. will be. The brain MRI already came back fine and confirmed that other than my weird personality, all is well up there. If these last two specialists can’t figure it out, they will most likely send me to the National Institute of Health or the Mayo Clinic. They are baffled as of yet, but I remain hopeful the medication will hold off the worst of what was going on and I can stay home until they figure it out. The good thing is that after 7 weeks of being sick and 5 weeks of jumping up and down and saying I was getting really sick, they are finally listening and have assured me that the first two folks who told me it was stress and the next two who told me it was muscle cramps were wrong. Nothing like breaking in new doctors in a new town with something so weird.
I really appreciate all the help and words of support and prayers and helicoptering Chip and I have received. I couldn’t have gotten through the past 7 weeks without Chip. He has been my absolute rock and God truly blessed me when he sent Cupid down our way. I’m also grateful for kelli coming down and helping out and Mom being on stand-by. I am in great hands. Kelli is my little Chihuahua (cute, barks, AND bites when needed) while Chip is my bulldog (pretty quiet but when he bites he might not give your arm back). The docs think it’s funny, but get the point. Shout outs also to Susan for picking up our great big box of vegetables from the farm (the carrots are my fav) and Darlene’s zucchini bread. It is divine and the basket of goodies were perfect. The chapstick was a brilliant idea. You and Sherm’s visit were wonderfully distracting from my roommate and her quest for her shoes (my 4th roomie wanted her socks, I kid you not). And thanks, Candy, for the email. Who knew you could send a personal email to the hospital and have it delivered.
Signing off for now. Haven’t slept since Wednesday night. Where was this stuff when I was studying for finals…
In the beginning...
July 20, 2009
I am writing to ask for lots of prayers in the upcoming week(s). I’ve been having a lot of trouble with shortness of breath and chest pains and a whole range of other things over the last month. It’s been bad enough I’ve been on the couch for over four weeks with few exceptions. Four doctors/nurses have told me it was related to stress or muscle cramps (it must be because I’m female, 39, and healthy right). Well, I just got the call this morning from the cardiologist’s office (never good to receive a call before 8:30 on a Monday morning from the doctor’s office) and they want to perform a cardiac catherization due to an abnormal result of my ekg during a stress test. They think it may be a blockage and will be calling me soon to schedule this. I’m still holding out that it’s my thyroid causing all this, but for the time being they are looking at my heart. The stress test went miserably unwell, which was good for the fact that the nurses performing the test were finally able to see what I was telling them about in how my body reacts to any exertion. They pulled me off the treadmill a minute into the exertion part and finished it with the drug equivalent. Not pleasant but they did give me cheese crackers when I was done.
I would appreciate it if everyone would send up prayers that the test will go well and they find a healthy heart when they perform the procedure. I’m only 39 and am working on my mantra of ‘40, fit, and fabulous’ for my birthday in September. With all the couch sitting I’ll drop the fit part for now, but I think 40 and fabulous would work for me, too J
I am writing to ask for lots of prayers in the upcoming week(s). I’ve been having a lot of trouble with shortness of breath and chest pains and a whole range of other things over the last month. It’s been bad enough I’ve been on the couch for over four weeks with few exceptions. Four doctors/nurses have told me it was related to stress or muscle cramps (it must be because I’m female, 39, and healthy right). Well, I just got the call this morning from the cardiologist’s office (never good to receive a call before 8:30 on a Monday morning from the doctor’s office) and they want to perform a cardiac catherization due to an abnormal result of my ekg during a stress test. They think it may be a blockage and will be calling me soon to schedule this. I’m still holding out that it’s my thyroid causing all this, but for the time being they are looking at my heart. The stress test went miserably unwell, which was good for the fact that the nurses performing the test were finally able to see what I was telling them about in how my body reacts to any exertion. They pulled me off the treadmill a minute into the exertion part and finished it with the drug equivalent. Not pleasant but they did give me cheese crackers when I was done.
I would appreciate it if everyone would send up prayers that the test will go well and they find a healthy heart when they perform the procedure. I’m only 39 and am working on my mantra of ‘40, fit, and fabulous’ for my birthday in September. With all the couch sitting I’ll drop the fit part for now, but I think 40 and fabulous would work for me, too J
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