Transplant Rejection Update: 30 July 2020

(**Sorry everyone...I was rereading this post today and saw that some text was inexplicably dropped from what I had written. I did my best to remember what I had stated yesterday when I composed this entry.)

I was looking to post my labs results from this past Tuesday, but cannot access the website today. I remember a few of the major numbers, and will give them here; but will have to include the labs on my next posting.

*Creatinine:   4.34 (?)

*GFR:   15

*BUN:   60

All three of these numbers are, well, terrible. However, I do remember that the rest of my labs were actually pretty good. So again, a mixed bag of results.

Also, my last Allosure test [that I had taken on 14 July ?] came back exactly the same as my first test...  practically non-existent at .012%.

I have scheduled my [new] initial visit with the Transplant Committee. The all day visit will be on Monday, 10 August. Because I have been through all of this before, and know pretty much everything I need, my new Pre-Transplant Coordinator stated that my time that day could very well be shorter than everyone else who is being evaluated. 

I have continued my Bowflex workouts every other day, except in cases of severe headaches. I am now at the point that I am starting to burn fat on my "off" days, and recently broke down past the 120 Kg barrier that I have struggled to get to ever since my weight suddenly, inexplicably rose over and over again during a relatively short time span. That was over two years ago.

I have been in the mid-119 Kg's for five days now; almost making the weight a trend. If I can at least maintain at this weight for another few days, I will consider the weight loss to be permanent.

On my workouts, I am up to 50 pounds on each arm, and do my rowing at 45 reps, leg presses at 50 reps, and the other arm exercises at 50 reps each. Plus, I have added bicep curls at 25 pounds, doing 25 straight reps on each arm.

On the seated rowing, once I get to 50 reps at 50 pounds, I will add five additional reps; get comfortable there, then add five more reps for a total of 60 reps. Once I am comfortable there, I will separate the Seated Rowing from the rest of my workout, doing it every other day (on the non-workout days). I will actually drop the weight to a level yet to be determined, but increase my total reps. My goal here is to do the seated rows for 30 minutes straight; then work up to a full hour. This will get my cardiovascular exercise in several days each week, in addition to the upper body workouts an equal number of times.

Of course, this entire plan hinges on how I am feeling, and the speed at which I begin to feel worse as the rejection continues. Even then I am hoping to do as much as I feel up to.

The TMD in my R jaw joint is fighting back hard against the acupuncture. Following each of the last three treatment sessions, I have had a terrible headache that evening and all though the next day! Each time these headaches increased that did so rapidly, going from a 5-6 up to a 10 within and hour; then staying there no matter what meds I used, how much sleep I got, how much food I ate of how much I just did nothing. Those muscles have become so stressed again that they are doing what they did when I first began treating the TMD back in 1998...refusing to relax. This will not deter me however, and I will continue to get the acupuncture, and force the joint muscles into submission. 

Also on the acupuncture, the neuropathy in my feet seems to be getting better, but very slowly. I occasionally have a sudden sharp nerve pain in a toe, on the ball or arch of my feet, or just notice more of a tingling in certain areas than the burning that has been occurring since 2012. So, definite progress there; even if it is slow.

I had my first episode of dizziness on Tuesday. Always just happening out of nowhere, I had just returned from my lab draw and was unlocking the door into my house when it hit. While disconcerting, the dizziness was not so severe that I had to sit down, I did have to lean against the kitchen counter until it had passed; which took several minutes.

In general I am feeling OK. The headaches are, overall, manageable; my appetite is good; my energy level seems to be holding; I do NOT feel unwell at all; while I do smell ammonia on occasion, it is not yet regular or constant; my daily urinary output remains consistent and clear; but my twice-daily vitals are usually high.

Anyhow, that's all I have for now.

Next week is an unscheduled lab draw--my request; in order to have fresh labs for Infusion day. Also, I have my August infusion of Belatacept, which will be on Tuesday, 04 August, as well. 

Until next week then...

Good Health to All!

ScottW

Transplant Rejection Update: 17 July 2020

It is finally official...

But first, after a rough week with terrible headaches, poor sleep and excessive summertime heat that leaves you drained any time you need to get outside, I can finally get caught up.

Let's begin with the past two weeks of bloodwork...

07 July 20 Labs                                 14 July 20 Labs

*Creat:   4.36 (+0.26)                      *Creat:   3.89 (-0.37)

*HCT:   35.2 (+1.6) Low                   *HCT:   36.4 (+1.1) Low

*Hemo:   10.9 (+0.2) IR                   *Hemo:   11.3 (+0.4) IR

*Lymph:   6.4 (+2.4) Very Low          *Lymph:   6.5 (+0.1) Ext. Low

*Lymph ABS:   0.5 (+0.2) Very Low   *Lymph ABS:   0.4 (-0.1) Ext. Low

*Neut:   75.5 (NC) High                    *Neut:   77.1 (+1.6) High

*Neut ABS:   6.2 (-0.5) IR                 *Neut ABS:   5.0 (-1.2) IR

*RBC:   3.88 (+0.11) Ext. Low           *RBC:   3.96 (+0.08) Ext. Low

*WBC:   8.2 (+0.3) IR                       *WBC:   6.5 (-1.7) IR

*BUN:   57 (+8) Ext. High                  *BUN:   53 (-4) Ext. High

*CA:   9.8 (NC) IR                             *CA:   9.4 (-0.4) IR

*GFR:   14 (-1) Ext. Low                    *GFR:   16 (+2) Ext. Low

*Gluc:   109                                      *Gluc:   107

*K+:   3.9 (-0.1) IR                           *K+:   4.0 (+0.1) IR

*NA+:   136 (-2) Low                         *NA+:   135 (-1) Low

*MG:   2.1 (+0.1) IR                          *MG:   2.3 (+0.2) IR

*Phos:   4.8 (-0.2) IR                         *Phos:   4.8 (NC) IR

*Prot:   7.1 (+0.2) IR                         *Prot:   7.1 (NC) IR

             NC= No Change     IR= In Range

Everything in red is concerning.

Why? Because they are all key indicators of worsening issues with the kidney.

The rest of my labs are decent. There really isn't anything too concerning with the majority of my labs.

With this weeks' results, I received a call from one of the doctors at the Transplant Clinic to tell me that they are placing me back on the Transplant List.

This  decision was not unexpected; though I was hoping that it wouldn't happen  until the end of the summer.

As soon as I receive--then fill out--the starting paperwork, the process to be re-listed begins. I will have to do all of the clearances once more; which will take time with this whole pandemic going on.

These include:

     -Dental

     -Cardiac

     -(For Men) Colonoscopy

     -Psychological, etc.

My status on the list will start on the very bottom. The current wait time in my area for a renal transplant [for my blood type] is 3-5 years. This is actually longer than my first trip on the list, being 2-2.5 years(though because of UNOS changes, it ended up being just under  fiver years).

In discussing possible dialysis, I will not start this until one of two things happen...either my electrolytes are completely out of whack, or I am feeling so lousy that getting dialysis would be a relief. We'll just have to play that call by ear.

In the meantime, until I feel lousy, I will be under the primary care of the Transplant Clinic. Once I feel bad enough to be on dialysis, I will be under the primary care of my Nephrologist. 

Also, I will have two Coordinators at the Transplant Clinic; my existing one for post-transplant, and one for pre-transplant. That will be weird as I try to keep all of the existing and new information straight and distinct from one another.

With the kidney still chugging along (despite the body not communicating with it very effectively), it could be several months before I start struggling. I am hoping that I can go long enough on my kidney that any time I have on dialysis will be brief.  Unfortunately, hope and reality are often two separate and distinct things. 

This is just a wait and see game now.

Assuming I must start dialysis, I will need to have my artificial graft resected, as I have previously discussed. Though still running, the loop graft is greatly weakened, so hemodialysis would be ineffective as the volume is just too inadequate. The healing from any surgery will take a minimum of six weeks; which has to be factored in to any timeline because I do NOT want another Central Line in my chest!  Assuming I have to redo the graft, it could be in the Fall, or later. I will let you know when it happens.

As I noted in the intro, my headaches have been terrible! Both TMD, non-TMD headaches are now in play. Over the past week the pain has averaged a solid 7 out of 10. My med usage is up as a result. It is not much fun with my head these days...

To combat this, I have been getting acupuncture on my jaw twice each week for the past four weeks. I will continue this until the end of July, when I will reduce that to once every week.  Also during these sessions, I have getting a chiropractic adjustment (including on my jaw), as well as acupuncture on my feet to help further heal the neuropathy.  So far, my jaw muscles are fighting back, which I full expected due to what they did when I first treated the TMD with the NTI devices back in 1998. The muscles fight back by [temporarily] increasing their tension until either I stop the efforts, or they finally relax. How long this takes is a definite unknown.

The non-TMD headaches are caused by the ever-shifting body chemistry caused by the body fighting against the kidney, as we've seen since last winter. Getting these to settle down is a total unknown. I honestly don't know if they even can be minimized.

In regards to the effort to reduce the headaches overall...I will just be happy if my head isn't intolerable while I await another kidney.

I continue to get in my every-other-day workouts done. I have had a couple of days that I had a struggle getting started because I was unduly tired. However, I just made the decision to start, and I ended up with a good workout.

During that call from the Clinic, I was told that my body needs more sodium. That's all well and good, but for someone like myself who does not--ever!-- put salt on foods, and actually detest too much salt in a recipe, just how am I supposed to increase my sodium intake? I have not figured that one out yet, so it will be interesting to know what solution I come up with.

So, that's my big news! 

Like I said, it was not unexpected; but still a bit of a gut-punch nevertheless. 

For now, I will be doing my labs every other week, which means that my next blood draw will not be until 28 July. I may or may not get another entry done before that date; it just depends on how I am feeling, anything new, etc.

In the meantime...

Keep yourselves and your family healthy by doing what you must to avoid the Wuhan/Corona/Wuhan/Covid virus. Please wear a mask as asked, and practice social distancing. Wash your hands frequently, and wash all clothing immediately upon return home from any outing. Remember, all of these precautions are only temporary, and are not difficult to do.

Stay safe everyone!

Good Health to All!

ScottW

Transplant Rejection Update: 02 July 2020

A mixed bag of news for you this week.

My exercising is going well. While I am still getting at it every other day, my abbreviated workout continues to improve. The current weight I am working with is 90 pounds. As of yesterday, I have had three sessions at that weight. The first session I reduced my total rows to 30, with a very brief rest after 20. I did the same with the leg press and the lat pull-downs.

For the second workout, and again yesterday, I completed all thirty of each exercise without resting after the first twenty reps.

Plus, I started exploring two additional exercises with very brief ten rep goes. The first is a lat pull-down with the hands together, like you are performing a pullup on a bar. The second is a lat push-down. Both of these new exercises worked my abdomen more, but did not strain it.

On my next workout I will keep the weight the same, but add both of the new exercises at 30 reps each.

Depending on that result, I may or may not add another ten pounds on the following workout.

Though my headaches continue their cyclical ups and downs, this past week showed a marked uptick in both the TMD-related and non-TMD headaches. I saw few times (either day or night) that were headache-free. While my sleep hasn't been great, it is no different than when my headaches of all types were significantly reducing in both intensity and frequency. The only difference now is that my labs are clearly worse; like when my original PCKD was worsening and the headaches just got worse and worse. It will be interesting to see how this goes.

My labs are also a mixed bad...

30 Jun 20 Labs:

*Creat:   4.10 

*HCT:   33.6 (-0.3) Low

*Hemo:   10.7 (+0.1) IR

*Lymph:   4.0 (-3.5) Very Low

*Lymph ABS:   0.3 (-0.3) Very Low

*Neut:   85.0 (+9.5) Very High

*Neut ABS:   6.7 (+1.2) IR

*RBC:   3.77 (+0.02) Extremely Low

*WBC:   7.9 (+0.6) IR

*BUN:   49 (-8) Extremely High

*CA:   9.8 (+0.4) IR

*GFR:   15 (-4) Extremely Low

*Gluc:   110

*K+:   4.0 (+0.1) IR

*NA+:   138 (+1) IR

*Prot:   6.9 (NC) IR

*MG:   2.0 (-0.2) IR

*Phos:   5.0 (-0.5) IR

         NC= No Change          IR=In Range

The two blatantly bad numbers are the Creatinine and the Lymphocytes. With the Creatinine being so high, you would think that I would receive a call from the Transplant Clinic; but I did not as we are in a wait and observe mode. I figure that so long as I do not receive an urgent call from the clinic, that I have nothing to be worried about...yet.

The big drop in the Lymphocytes, while not unexpected, actually defies the latest trend of a drop followed by at least a small rebound. I must be almost paranoid any time I venture away from home; especially with the pandemic picking up steam once more. Plus, my wife also has to be on high alert so that she does not bring anything home that could endanger me.

Other than the highlighted results, my labs this weeks aren't actually too bad. 

A total of nine of these lab values are within acceptable ranges. So while my body struggles to work with the kidney, some beneficial filtering is obviously ongoing; especially considering my Protein, Potassium, Magnesium and Sodium results. 

Speaking of filtering, my kidney continues to process all of my daily fluid intake. 

I am basically maintaining my weight (121.6 Kg as of this A.M.), and I am seeing zero peripheral edema up to this point. 

My energy remains decent; my appetite is good; my sleep continues to range from poor to good, and my brain is in a good place despite knowing that things will be going downhill in the near future. 

Things that I am once again paying attention to (like being on dialysis): Smelling ammonia (occasionally), smelling like ammonia (not yet), peripheral edema (none), appetite/appetite fatigue (no changes), overall energy level (decent) and clarity of thought (still good). I do not dwell at all on any of these, but will pay attention when they happen so that I can relay that info to my doctors.

Not a bad week...aside from  the highlighted labs. I look forward to another good week in which I also have labs and my July infusion of Belatacept.

Until next time...

Good Health to All!

ScottW