Many of you have been graciously asking for updates regarding my recent and ongoing doctor appointments. This summer, it seems that we keep going from one thing to another, with grandchildren visits interspersed throughout. I am thankful for the fun times with the kids!!
The last major trip down to MDA left us with the decision that we would wait until October before doing the next round of bone marrow biopsies, flow cytometry tests, CT’s, etc. Well, that was before this nagging cough that I’ve had since last December got uncontrollable. MDA had already sent me to all of their folks to check for the big stuff, so we had decided that it must just be allergies (which I did not have before the transplant). :/ So I started on several allergy related meds, sprays, etc. It seemed to help…for a while. Then a few weeks ago, it came back with a vengeance that nothing would quiet!
During this same period, after a weekend at the country, I acquired a weird rash. Well, at first we thought I had major mosquito bites all swollen up, but it didn’t take long to figure out that wasn’t it! Four days of insanely itchy whelps followed by red splotches jumping from one area to another finally got my attention and I made an appointment to go to an allergist and sent pictures to my docs at MDA.
Ahhh! Prednisone! Relief. But he didn’t know what on earth was the cause. It seemed to be heat related, but it was very “atypical.” Then he gave me some wonderful nasal spray with an antihistamine in it and some cough medicine with codeine. First night I’d slept in ages!!
While this was all great, my docs at MDA were not happy. They do NOT like rashes!!! So Monday, even though I was cleared up for the time being, I went down for labs and a “viewing.” Unfortunately, some of my lab numbers that I have had trouble with in the past were stirred up again. Things that sound completely benign and silly compared to talking about cancer and the like.
First, my Potassium serum count is up again. It has done this many times over the months, now years. Doesn’t sound like a big deal, but it has to do with your kidneys and can affect how your heart works. So it’s kind of a big deal.
Second, my Calcium serum count is up again. This is a bigger deal. I have already been to the endocrinologist at MDA and been tested and discovered that I have a goofed up parathyroid gland. (Not the same as the regular thyroid gland.) The parathyroid hormone regulates the amount of calcium in the blood and in the bones. So my calcium is continuing to leach out into the bloodstream and not be absorbed into my bones, thus worsening my osteopenia/osteoporosis condition. Long story short, they have been watching this number waiting to see if they are going to have to remove my parathyroid gland. Looks like they probably will. :/ The frustrating thing is that I have had my whole body rebuilt without being cut on, and now I’m going to have to have surgery because of this silly little gland. Oh, well.
Next Monday, they want me to come back to see the GVHD doctor and the transplant dermatologist (who knows a whole lot more about rashes in transplant patients than the normal allergist or dermatologist!). Plus, I have to re-do all my labs. They are pretty sure that my rash is due to “immunodisregulation.” Yeah, I don’t think it’s a word either, but it just means that even though my immune system is better than it was when I was right out of transplant, I will never, ever have a normal immune system again, and I will be prone to get weird stuff.
Then, instead of waiting until October, Dr. Shah wants to do another bone marrow biopsy, flow cytometry test (blood and bone), CT, chimerism %, etc. in August instead of waiting until October. Sooooo, besides my granddaughter’s birthday, Paul’s birthday, great niece and nephew’s birthdays, trips to the country, still trying to figure out the details of Paul’s new job/insurance/retirement plans, projects to do now or later, and when to go back to Dallas so my daughter can catch a nap and a break from those three adorable little hooker dookers…August is going to be full.
So as I keep saying…one day, one prayer, one step at a time.
I sure am glad the fatigue is better!! :)