In the weeks leading up to this post, my labs had been indicating a sustained and continuous drop in my hematocrit and my red cell count. As a result of both, I was becoming more and more tired as all energy left me.
During my recent vacation, I spent most of my time sitting around, napping and throwing a ball for dogs. On the one outing I took to see the ruins at Hovenweep National Monument, I could walk only a few hundred yards before I was thoroughly exhausted. So, after my return home last week, I had my latest Kidney Clinic visit, and asked specifically about my hematocrit level. It turns out that the doctors were growing as concerned as I was, and the ended up prescribing a few rounds of a Red Blood Cell booster called "Aranesp" (pr: Air-uh-nesp).
Basically, this med, given by subcutaneous injection, helps the kidney to tell to the bone marrow that it needs to produce more Red Blood Cells. I already know that my bone marrow is extremely healthy, so this is just a communication issue between the kidney and the bone marrow. The Aranesp simply enhances that communication so that better RBC production will occur.
Now, I realize that that explanation was a bit redundant, but it adequately gets the point across. I will include literature the Infusion Center pharmacist gave me about the med and its side effects at the end of this entry. Also, if you want to look up further information, I have personally found WebMD.com, Drug.com or the manufacturer's website to be the best sources of information on most drugs. I also frequently reference the New England Journal of Medicine, as well.
My latest labs clearly show the precipitous drop in both the Hematocrit and RBC numbers.
18 June 18 HCT: 24.3 (Normal is 35-41) RBC: 2.72 (Normal 10-12)
The end goal of having the Aranesp injections is to increase my hematocrit to at least 35, and my RBC to a minimum of 8.0. Once both are achieved, my energy should be increased exponentially.
Following are yesterday's latest labs...
18 June 18
*Tac: 5.2 (Dropping as needed)
*Creat: 2.96 (-0.24) Dropping as needed to new low
*CA: 10.0 (+0.1) IR
*RBC: 2.72 (+0.08) Very Low
*WBC: 6.1 (+0.8) IR
*HCT: 24.2 (+0.5) Extremely Low
*Lymph: 10.0 (+2.7) Low
*Lymph ABS: 0.6 (NC) Very Low
*Neut: 82.2 (+2.3) Very High
*Neut ABS: 5.0 (+0.8) IR
*GFR: 23 (+2) Extremely Low
*BUN: 44 (+7) Very High
*Gluc: 107
*Phos: 3.4 (+0.4) IR
*Hemo: 7.8 (+0.2) Very Low
*K+: 4.6 (+0.1) IR
*NA+: 141 (+1) IR
*Prot: 6.5 (-0.1) IR
*MG: 1.8 (+0.3) Low
*BK: Not Checked
*CMV: Not Checked
Aside from the aforementioned HCT and RBC numbers, my labs are trending in the right direction, for the most part. The Hemoglobin is way down, but this also is related to the HCT and RBC labs.
The Belatacept continues to be well tolerated by my body. The latest infusion on 12 June has had zero noticeable side effects. On this subject, the earlier information about weaning off the Prograf was revised at last weeks' Clinic visit. Now, we will wait until I am finished with the initial Belatacept infusions before I start to pull back on the Prograf. I have two more twice-monthly infusions before going to the every 28 days infusion, so I am not yet sure exactly when the drawdown of the Tac will commence.
The headaches continue unabated. LOTS of TMD involvement lately; this despite my regular use of the NTI devices.
My sleep remains furtive, but best. With already being exhausted due to lack of RBC's, you would think that my sleep would be awesome; but it isn't. I am restless just about every night. It's is NOT because of dreams. I know this because I have control of my dreams once again, so no triggers are waking me up. I just am sleeping poorly. As a result, naps are being taken nearly every day.
The neuropathy in my feet continues to very slowly improve. I have no more pain in my legs or ankles. Now, only my feet are involved. I still get those pin prick sensations that tell me the nerves are healing, which is excellent. I am having to soak my feet in an ice bath only every 1-2 weeks now. On my vacation [of 11 days], I did not soak my feet once!
So, definite improvement for both feet!
The pain and numbness in my abdomen are both getting better. I am finally standing straighter, walking with more ease and am moving around with greater comfort than I have since before the hernia repair. This will only continue getter better and better as time goes on.
For obvious reasons, I have not yet begun any exercising. I anticipate getting more and more active as the Aranesp does its job, and should naturally slip into greater activity without realizing it. And because of the RBC issue, my earlier goal of getting into shape by the end of the summer will obviously have to be re-examined. It could be a few weeks yet before my energy level improves, and knowing how far I have to go to get to even somewhat decent shape, it will take many months before I see any significant improvement on that front. Oh well. It is what it is, and I can push myself only so far before I am done. I will do the best I can, and as I am able.
That's all I have for now. Again, I am posting the Aranesp information below; so if you are interested, please look it over.
Good Health to All!
ScottW
