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 :)
Friday, July 31, 2009
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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