**Remember, folks, this blog reflects only MY experience with PCKD, Dialysis, Transplant and Post-transplant life. My case has been unusual, so if you are dealing with PCKD and everything surrounding the disease, please always consult with your doctors and other healthcare providers for the treatments and medications that are best for you!
Last night was the last time I am taking Tacrolimus in the evening.
Why? Because this afternoon, I am having my monthly Belatacept infusion, which also marks the day I reduce my daily Tac dosage by half (to 0.5 mg). For the next month I will only be taking Tac in the morning. Then, the day after my September infusion, the Tac will be gone for good!
Ahead of todays' infusion, I thought I'd go ahead and post the latest labs earlier in the blog than usual...
06 Aug 18 Labs
*Tac: 3.5 (-0.1) Dropping
**Next week I should see a large drop in the Tac level due to the reduction of the med as discussed above.
*Creat: 2.54 (+0.19) Slight rise
*CA: 10.1 (+0.2) IR
*RBC: 3.60 (+0.26) Very Low
*WBC: 6.4 (+0.2) IR
*HCT: 33.9 (+2.1) Low
*Lymph: 2.0 (-9.8) Extremely Low
*Lymph ABS: 0.1 (-0.6) Extremely Low
*Neut: 86 (+4.1) Extremely High
*Neut ABS: 5.6 (+0.5) IR
*GFR: 27 (-3) Extremely Low
*BUN: 46 (+8) Very High
*Gluc: 106
*Phos: 3.3 (+0.2) IR
*Hemo: 10.8 (+0.8) IR
*K+: 4.2 (-0.1) IR
*NA+: 141 (NC) IR
*Prot: 7.2 (+0.6) IR
*MG: 2.2 (+0.2) IR
*BK: Not Detected
CMV: Not Detected
*NC= No Change IR= In Range
There is some movement in my labs this week; some good, some not so much. As highlighted above, I thought I'd address these areas. First, the Hematocrit and the Hemoglobin. Both saw terrific rises in the numbers. This is the second week in a row the HCT saw a large increase, which is fantastic! Plus, the Hemo rising 0.8 to 10.8 is also great. The only issue I need to keep an eye on is that this doesn't go much above 11.0 until the doctors want to see it go higher.
This is because regulating the Hemo is important to avoid an imbalance between the Hemo and the RBC's. So, until the RBC's catch up, this value must be watched.
Speaking of the RBC's, there was another small increase. Though still well below the target range, it is slowly rising.
Second, the wonderful increase I saw last week in my Lymphocytes and Lymph ABS was short-lived as both lab values plummeted to extremely bad numbers. I don't know why such a drop would have occurred, especially considering the steady progress these had made since the anti-thymo treatment wore off. No matter the cause, I will go back to being hypervigilant about my immune system health.
I am hoping the decrease, along with other labs that went slightly askew, is (are) the result of needing my next infusion of Belatacept. With the main anti0rejection med being at a low point, I am purely speculating that that is why my numbers are off. Again, this is completely uneducated speculation on my part.
Time will tell me if this is a trend as I take labs subsequent to the monthly Belatacept infusions in the months ahead.
Now, on to other things...
The TMD headache I mentioned in my last blog entry continues unabated. With an average pain level of a solid seven, I continue to be unsuccessful in reducing the intensity or nature of the ongoing headache.
Before I got my TMD headaches under control back in the early 2000's, my headaches went through what I referred to as "cycles" in both the intensity and duration of the headaches. Those would last anywhere from a few weeks to six months, and at an average scale of an eight, before I got even one day of rest from the headaches.
It seems that I am once again in one of those cycles where the intensity and duration both increase. Pain meds help alleviate the pain, but do not eliminate the headaches themselves. As I have stated several times before, doing that will simply take time. As I did before, I must utilize all the tools I have to battle the TMD into submission. Doing this includes: Wearing my NTI devices at night; Keeping my jaw in alignment as best as possible; Avoiding hard or chewy foods; Relaxing my head, shoulders, abdomen, arms, legs and back as much as possible, and Keeping my eyes relaxed by wearing sunglasses any time the outside light is too bright--yes, even rainy days have intense light that requires me to wear sunglasses. Additionally, I will be employing the use of acupuncture to relieve muscle stress in my head. *(I've used acupuncture before, which is when I had the TMD under complete control for ten years.)
So, once again, getting the TMD to fade into the background will just take time, and being patient while that happens is an absolute must!
443p...It's now later in the afternoon, and I just returned from my infusion of Belatacept. Everything went well, so I don't expect anything untowards happening as a result of the treatment.
My sleep has been OK for the most part. I once again have my dreams under control which helps improve the quality of sleep. However, I had a setback in sleeping in a totally dark room again, so now must have a light on that shines just a little light so that the dark is not pitch black, and avoid waking up in cold sweats again. I'd been just fine for a number of months, but on a recent visit to relatives, the room I slept in was totally black at night, I was unfamiliar with the layout of the house, and the fear I had when I'd awoken in the middle of the night (in complete darkness) unable to breathe because of fluid in my lungs, all came flooding back; so now I have to get used to complete darkness once more.
My appetite is slowly improving. With my overall energy up a touch, I am starting to use more of that energy, so an increase in my food intake has quickly followed. Granted, I'm not yet eating a lot more; but I am eating more.
I started using the Protonix again. I had been instructed to either go off the med, or use in every other night, or however my body needed. Well, after a couple of weeks without the med, I began having low-grade, unending nausea. This slowly increased until I was having to take Zofram (anti-emetic) two or three times each day to control the nausea. This led me to restart the Protonix about two weeks ago. At first, I took the once per day dose every other day. This helped, but did not eliminate the nausea. After a week, I decided to try taking the Protonix every morning. This has almost eliminated the nausea.
Last year, three months after my transplant I was removed from the Protonix entirely, and had zero ongoing nausea.
This year, after the rejection in March/April and having my immune system crashed again, the nausea has continued. I am hoping that I can wean myself off the med without setting off more nausea. We'll see.
My weight has been slowly falling. I still have Prednisone weight to lose, but that is coming off. About two weeks ago I saw my weight drop to 114.2Kg. It was short-lived unfortunately, and I quickly shot back up to 116.5 Kg. As of this AM, I weighed in at 115.8 Kg. It's getting there...
With my energy increasing, I am once again able to work on puzzles. I am currently about 50% done with an extremely difficult puzzle, and expect to finish that within two weeks. Though I am not yet reading a book every day, I am finally reading more news stories online. As my energy increases, so too will my ability to concentrate on whatever I am reading, or puzzles I am working on, and avoid falling asleep.
This is definitely a good thing!
And...I think that is all I have for today. IF I think of anything else, I will amend this entry at the bottom of the page.
Until next time, enjoy the remainder of your summer!
Good Health to All!
ScottW
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