Sunday, June 08, 2008

Being sick really sucks

In a break from my usual Obama-bashing [not that I don't enjoy that immensely!], I'm going to spend a little time venting about personal problems instead.

The past few years have been a nightmarish blur of serious health problems, seemingly endless traipsing from specialist to specialist, a constant stream of tests...and more tests...and more tests...with a net effect of: WE DON'T KNOW WHAT'S WRONG! It's exasperating.

Five years ago my bones started breaking like twigs--and not just fractures that could be fixed with casts, but needing surgery (or multiple surgeries in the case of my ankle). We had known for some time prior to that that my bones were osteopenic, and we attributed that to the lack of natural hormones from the time I was 22 years old and had to have a life-saving hysterectomy, which had to include both ovaries. Synthetic hormones are wonderful things, and I wouldn't want to do without them, but even though I've been on hormone replacement therapy since shortly after my hysterectomy, it's just not the same as natural hormones.

Once the bones started breaking, everything else started to fall apart. It's not that the issues are related, necessarily, it's just that the fractures happened to usher in an onslaught of other problems.

First, there was unexplained facial flushing, very difficult to control hypertension, and recurring episodes of fainting or feeling like I was going to faint. Oh, there were nosebleeds, too, something that had never been a problem before. Along with this was a continuation of unexplained weight gain that had started some time earlier. I gained over 100 pounds--while living on barely enough calories to keep a supermodel alive.

Then came the sudden, dramatic onset of pulmonary problems, as in needing emergency treatment out of the blue one day just so I could breathe. My primary physician got me through that, but then she shipped me off to a pulmonologist for more definitive diagnosis and treatment. The pulmonologist ended up calling it asthma because he had to call it something, but there was very little about it that was typical of asthma, starting with my age at onset (it's unusual for people in their 40s to abruptly become asthmatic). So I started using a combination of oral asthma medications plus inhalers and nebulizers. There were days I felt so bad I would get panicky--it's a very unsettling feeling when you're unable to breathe and feel like you're suffocating, so, yeah, I'd get a bit panic-stricken as a result.

During this time the lymphedema I had developed in my right ankle post-fracture continued getting worse, ultimately spreading to involve the entire right foot, ankle, leg, and then up into the abdomen and the other leg. Lymphedema is a chronic problem--once you have it, you're always going to have it. It can be quite debilitating. At various times I went to therapy 3 times a week for manual lymph drainage, and it would help, but the problem always remains--and gets bad again without treatment.

When I broke my right wrist [and, yes, I'm right-handed!], it never occurred to me that I would lose some use of my hand and wrist, but I did. Despite having excellent--really excellent--orthopedic surgeons (one for the ankle and one for the wrist), neither my ankle nor my wrist ever returned to their pre-fracture normal states. There's ongoing pain and limited range of motion in both, plus I developed a tremor in my right hand when I try to do fine motor activities. As a programmer and system administrator...that just doesn't work out.

Over the next year or so I was shuffling back and forth between an assortment of specialists, including: The two aforementioned orthopedic surgeons, a general surgeon [my gallbladder had to be removed after it was found to be completely infiltrated with cholesterol--quite a good trick for a 20-year vegetarian!], a cardiologist [for the hard-to-control hypertension, plus chronic, unexplained tachycardia], the pulmonologist, a gastroenterologist, an endocrinologist, and an oncologist/hematologist. I had more tests than I can recall, including a bone marrow biopsy, but in the end there were no solid answers.

My primary physician was the one to zero in on a rare--really rare--condition called Carcinoid syndrome, and she orchestrated various tests for that. Unfortunately, the one test that's considered definitive, a positive result for 5-HIAA in urine, only occurs in about 50-70% of people who have Carcinoid tumors. So if you're positive for 5-HIAA, you can be given a definite diagnosis of Carcinoid syndrome, but if you're negative for it, you cannot rule out Carcinoid syndrome as long as all your symptoms point to it. Therefore, I was given a preliminary diagnosis of Carcinoid syndrome, and the doctors proceeded from there.

The cardiologist could find no cardiac-related explanation for the tachycardia or hypertension, so she decided it must be an endocrine problem. Well, the endocrinologist could find no endocrine-related explanation for them, although we did discover that I'm hyperparathyroid. The oncologist and gastroenterologist could not locate a primary Carcinoid tumor, but they couldn't rule out its presence either.

All I know is I felt like crap. Big time. I couldn't even walk up or down my driveway without being completely out of breath, having my heart pounding so hard it felt like it was going to explode, and having to rest halfway before continuing. Quite a fall for someone who used to dance ballet six days a week.

After relocating back to my home state [California], I took something of a break from the "traipsing from doctor to doctor" routine, until a severe hypertension issue (my BP was more than 200 over 130) forced my hand. That was quickly followed by a severe breathing crisis that, again, necessitated the use of steroids to control.

Then, we started noticing anemia. At first, it wasn't terrible, but each time we did labs it got a little worse. Coinciding with this, my primary doc sent me to a rheumatologist because of a crazy high sedimentation rate. The rheumatologist did more labs, and she found a variety of things that hadn't been spotted before, including the fact that I'm positive for rheumatoid factor; she also saw something that made her suspicious about Lupus, but I told her that had previously been ruled out, but she's still not sure. Because of other more pressing issues, that's been put on hold while we work on the other stuff, but she's monitoring me very carefully--we're doing labs about every 2-3 weeks.

After one set of labs she was so alarmed at how bad the anemia had gotten, she contacted my primary doc with the lab results and told her to do further testing. Once that was done we narrowed down the type of anemia, iron deficiency anemia, and also determined that I'm producing plenty of red blood cells but then they're disappearing. This suggests internal bleeding, so off I went for GI tests to see if there was something, like an ulcer, that was responsible for this. Last week, after being in the hospital and dealing with anesthesia and everything, the GI doc could find no obvious source of bleeding; I have a followup visit this week to go over the results of all the biopsies he took, including the stomach lining, to see if they shed any light on this latest mystery.

Tomorrow I'm off to a hematologist to see what's next in the pursuit of the source of the anemia. I could not tolerate the oral iron my rheumatologist had put me on, so we're going to decide on an alternate form of treatment, i.e., either IV/infusion or injectable iron. Of course, this is just a band-aid, as it will improve the anemia but it won't explain WHY it's there in the first place. But at least I might feel a little better...and that would be a blessing.

I'm back on steroids now, and have been for about a month, but I'm doing okay so far. My rheumatologist agreed to put me on prednisone and to stop the anti-inflammatories because they were wreaking havoc on my gut, but because of my osteoporosis, long-term steroid therapy is not acceptable. IMMEDIATELY after I started the prednisone, I became ravenously hungry--and that's really unusual for me. I normally eat very little because I just don't feel like it. Not now! I just want to eat constantly. The funny part? MOST people gain weight as soon as they start taking steroids; I, on the other hand, have been losing weight steadily during the month I've been on them, even though I'm eating a crazy amount of calories [for me]. My rheumatologist was literally shaking her head at my last visit because none of it makes sense.

I became a grandmother in January and have yet to go to New York to see my grandson, and this is directly due to the ongoing, debilitating health problems I'm having. My daughter is very understanding about it and has promised that she and her husband will bring the baby out here this summer, but I know this must be extremely disappointing for her, as it is for me. I had always planned to be by her side when she gave birth to my grandchildren, but I couldn't have anticipated that we'd be 3000 miles apart AND I'd be too ill to travel...

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