Post-Transplant Update: 17 July 2018

Even though I failed to finish that last posting, I have more great news to share;

so let's get started!

Last time I was telling you about my upcoming final loading dosage of Belatacept. Well, that happened on the 10th, as planned, and my next infusion is not until August 7th. 

Additionally, at last weeks' Kidney Clinic visit, the doctors cut my daily dosage of Tacrolimus (Tac) in half; now at 0.5 mg 2x per day. In an abundance of caution for how I react to meds, my doctors have instructed that my tapering off of the Tac will take two full months. From the 10 Jul infusion to my first monthly infusion [of Belatacept], I will take the Tac as described above. Following the August infusion, the Tac will again be cut in half to 0.5 mg 1x per day (in the AM). Once I have the September infusion, the Tac will be completely eliminated, and I will have only the Belatacept as the main anti-rejection med.

Next, I had my latest follow-up appointment with the Transplant Team Cardiologist yesterday. After looking at my last echocardiogram, he has determined that my heart is back in fantastic shape! The aorta looks good, as do all the valves in my heart. There is zero damage to the pericardium--the actual tissue/muscle that makes up the heart, so I should have absolutely no problems once I have the energy to start doing exercise.
I was also instructed, that once I begin to get that exercise, that I take things extremely slowly. Undo pressure on the heart could occur simply because of the length of time it has been since I last did any aerobic/anaerobic exercising. IF I feel anything untowards, I need to report it immediately.  By the way, the cardiologist is so confident that I am doing so much better that my next appointment isn't going to happen for another year!  So, fantastic news all around on the cardiac front!

And for the last of the great news...my latest labs.

16 July 18:

*Tac:   3.8 (-2.4!) Dropping

*Creat:   2.54 (-0.20) Dropping

*CA:   9.6 (-0.5) IR

*RBC:   3.16 (+0.08) Very Low

*WBC:   5.6 (-0.1) IR

*HCT:   29.6 (+1.0) Very Low

*Lymph:   9.5 (+0.8) Very Low

*Lymph ABS:   0.5 (NC) Low

*Neut:   81.7 (-1.6) Extremely High

*Neut ABS:   4.6 (-0.2) IR

*GFR:   27 (+2) Extremely Low

*BUN:   39 (+4) Very High

*Gluc:   103

*Phos:   3.5 (-0.1) IR

*Hemo:   9.3 (+0.1) Low

*K+:   4.4 (-0.1) IR

*NA+:   139 (NC) IR

*Prot:   6.7 (-0.1) IR

*MG:   1.7 (-0.1) Low

*BK:   Not Detected

*CMV:   Not Detected

As scheduled, the Tac is dropping, just as my daily dosage has dropped. After 07 August...my next infusion of Belatacept...the Tac should drop even further as my Tac intake drops by 50% once again.

The creatinine is also dropping nicely. Thought the new low of this value is still an unknown, the Clinic doctors are optimistic that it could drop below 2.0; which would be AWESOME!  :o)

The Aranesp injections (RBC production booster) are also doing just as they are intended to...increase my RBC count. Accordingly, my RBC, Hematocrit and Hemoglobin results have ALL increased.

All in all, all my labs are trending in the right directions...finally.  (Whew!)

So, another great bit of news for you this week! 


On other fronts, the TMD headaches continue; but the pace and intensity have slowed a bit. On a typical month, I will go through a whole Rx of T3's to combat the headaches. Over the last two months, those same Rx's have lasted an extra week each month. It may not be a lot of progress, but it IS progress! Any improvement is a welcome change.

My appetite has been fickle lately. I'll often be hungry, start eating, then become nauseated for no apparent reason. Though it ruins my appetite, the nausea never advances towards actual emesis. When this happens I try to get as much food into my stomach as I can before I must stop; so at least I'm getting as much food and nutrition as possible. Again, this doesn't happen every time I eat; but often enough. I'm hoping this is because I am now off of the Protonix, and that my body will adjust soon enough and the nausea leaves for good. Time will tell.

Sleeping has been better over the past two weeks. Personally, I think this is because of the uptick in my RBC's and Hematocrit. I am taking few (if any) naps, and the quality of my sleep seems to be better, as well. Let's hope this continues.

Energy-wise, I still lack pretty much any at all. With the improvement due to the Aranesp injections, my energy level will rise; though it will take time...which I have an over-abundance of. For me, patience continues to be the name of the game.

I think that that is all of the news that I have for you today.

Steady progress is finally being made. 

Let's keep this trend going!

Good Health to All!

ScottW

Post-Transplant Update: 02 July 2018

I received some great information during my last Kidney Clinic visit that definitely needs to be shared!

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

Post-Transplant Update: 19 June 2018

It's a bit later getting this post written than I had predicted, but I'll explain why...

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