First off, I have now had four Belatacept infusions, and the results are fantastic! My creatinine has steadily dropped to today's 2.57! That's over a 1.0 drop from when I began the new med. Granted, I am still on my full dose of Tac, but without the infusion, I would likely still be struggling to get the creatinine to drop at all. I have one more every-other-week infusion before I go to the once per month schedule. That last one is on the 10th of July, which means the following infusion of Belatacept will be in early August.
--Now, starting that great info--
To start Belatacept, the twice per month schedule is for what is called "loading" the patient. In other words, you are taken quickly to a therapeutic level in order to get on the monthly dosing. Once a patient is at that point, the dosage you receive--in my case, 5 mg/Kg--remains the same as you've already been taking, as does the total infusion time.
Now, once my next infusion is done, the Transplant Docs will begin weaning me off the Tacrolimus. Doing that should take no more than a few weeks. After that, managing my creatinine is solely up to the Belatacept. As I get into better shape, the dosage of the infusion will change as my weight changes.
As of this morning, I have now had three injections of Aranesp in order to boost my RBC production. On that front, the past two injections have done their job and boosted my Hemoglobin, RBC's and Hematocrit. The main number the Transplant Committee is looking at is the Hemoglobin. As this rises, so too will both the RBC's and the Hematocrit. The target for the Hemoglobin is between 10.0-11.0. The higher that number, the better.
My labs this morning reflect only the first two Aranesp injections, and my Hemoglobin has risen from 7.80 to 8.2 to 8.8! This news is spectacular! I'll display the RBC and Hematocrit later in my lab values for today.
The final bit of news that I wanted to relay is that, for transplant rejection patients, the time it will take the Lymphatic System to recover from a second anti-Thymo infusion--used to crash your Immune System and save the organ--is far greater than when a patient has initially received their transplant. So, instead of about a three month recovery, the time increases to between 7-12 months, depending on the patient. This happens because the additional anti-Thymo therapy simply inhibits a faster recovery time. I do not understand the pathophysiology behind this change, it is just what I was told by my Transplant Doc last week.
As a result, even though my latest quarantine period is technically over on the 4th of this month, I must continue observing most quarantine protocols for some time to come. That doesn't mean I am stuck at home, I just have to continue being hyper vigilant about wearing a mask in public, sanitizing my hands often, avoiding cuts as best I can, staying away from kids and babies who are sick, or have been recently inoculated with a live virus, etc. Other things I can no longer do regardless of where my Lymphocytes are at include: Be around anyone who is sick, or who may be carrying a virus, share food or drink, eat at a buffet, be in a crowd without a mask, eat anything of questionable quality or freshness ('If in doubt, throw it out.' (An old restaurant adage)), keep my hands away from my face unless I have just washed or sanitized them, etc.
This morning's labs, my Lymphocytes dropped from 9.5 to 8.4. The target we are wanting is between 19-27. This lab value waffles around constantly, but getting up to the range will take time because of the added time it takes the Lymphatic System to recover.
Some people might say that I am being too paranoid about viral safety. That could very well be the case. However, after having just endured [now] almost nine years of kidney disease, five years of dialysis, multiple dialysis access surgeries, years of intense nausea and vomiting, etc, I am not about to do anything that might jeopardize the kidney I am now caring for! Would you feel differently?
Caring for this kidney is of paramount concern. After all, someone lost their life so that I could have the transplant. Just think about that for a minute....
A family lost a son, husband, father. It is now my responsibility to honor that loss/sacrifice by doing everything I can the ensure that I carry that this healthy kidney for as long as I possible. And that is exactly what I have done, and intend to continue doing for [hopefully] years to come.
Labs: 02 July 18
*Tac: ?? (Dropping as needed)
*Creat: 2.57 (-0.25) Dropping as needed to new low
*CA: 10.2 (+0.1) IR
*RBC: 2.99 (+0.16) Very Low
*WBC: 6.9 (+0.4) IR
*HCT: 27.4 (+1.9) Extremely Low
*Lymph: 8.4 (-1.12.7) Extremely Low
*Lymph ABS: 0.6 (NC) Very Low
*Neut: 84.3 (+0.6) Very High
*Neut ABS: 5.8 (+0.3) IR
*GFR: 27 (+3) Extremely Low
*BUN: 36 (+4) Very High
*Gluc: 107
*Phos: 3.5 (+0.5) IR
*Hemo: 8.8 (+0.6) Very Low
*K+: 4.3 (-0.1) IR
*NA+: 140 (+2) IR
*Prot: 6.8 (+0.1) IR
*MG: 1.6 (NC) Low
*BK: Not Checked/No Results
*CMV: Not Checked/No Results
Though the Tac, BK and CMV results are not yet available, most of these numbers are trending in the right direction. I am very pleased with the results!
That's all I am going to do today. Because of a long nap, I started this entry much later that I had intended, and it's now time for dinner. I will try to finish up either on this entry, or a new one in the next day or two.
May each of you have a fun, safe July 4th celebration! Please remember to honor, in some way, those great men who sacrificed so much, so that we could enjoy the Liberties we have today.
Good Health to All!
ScottW
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