Post-Transplant Update: 27 May 2020

After a hectic number of days running essential errands, I am finally rested enough to sit down and catch you up on my Kidney Clinic appointment.

First, the doctors do not think that the kidney itself is rejecting. All lab work and testing thus far do not show rejection. However, it seems that my body, despite the anti-rejection meds, is now struggling with the kidney. So much so, that I will begin the workup to be placed back on the transplant list in the coming weeks.

 

So...essentially I am having a non-rejection rejection, so to speak.

I voiced my frustration to the doctors, citing that I am 100% compliant, so it just seems odd that I would be struggling. They stated that, and I'm paraphrasing here, 'when a patient is doing everything they have to in order to keep the organ healthy, that they too get frustrated, and look extensively to figure out how best to proceed. Plus, there are non-compliant patients who have no problem for years; which just doesn't make any sense.'

Also, the doctors want to look at my heart once again, just to rule out any cardiac involvement. I should be receiving a call for that test (I don't recall the name...sorry) sometime this week.

A new med was ordered to help with my rising blood pressures; Spironolactone. Because the pharmacy had to order it, I was unable to start the regimen until Sunday. So far, there is no real difference; but that may be because it takes a cumulative effect, which usually takes several days to achieve.

Further, they once again stressed exercise, good eating, low salt intake (which I already do), and losing some weight, which I am already working on.

To that end, I was fortunate enough to find this past weekend, the exact same model of a Bowflex that I had used (5-6 days per week!) before this whole kidney thing began. I wanted that model (XTL) because it is perfect for my back, and has the ability to do rowing-type exercises, leg presses and straight down lat pulls.

The people selling it are moving cross country and did not want to take it along, and I paid just $100 for something that should have cost about $800!   It needs a little TLC with cleaning, small repairs and new hand grips, but that will be nothing. I expect to be able to start using it within two or three weeks; depending on how fast I can get things done.

Plus, I purchased some new shoes for my walks that are lighter, breathe better, and are cooler overall; so walks will no longer be so hard on the neuropathy.

Next up, the latest lab work...

26 May 20 Labs

*Creat:   2.94

*HCT:   36.2 (+0.8) Low

*Hemo:   11.6 (+0.6) IR

*Lymph:   7.6 (-0.9) Very Low

*Lymph ABS:   0.5 (-0.1) Very Low

*Neut:   74.2 (+5.1) Slightly High

*Neut ABS:   4.6 (NC) IR

*RBC:   3.98 (+0.11) Extremely Low

*WBC:   6.2 (-0.5) IR

*BUN:   41 (-5) Extremely High

*CA:   9.6 (+0.4) IR

*GFR:   23 (+3) Extremely Low

*Gluc:   108

*K+:   4.4 (+0.8) IR

*NA+:   138 (NC) IR

*MG:   2.3 (+0.2) IR

*Phos:   4.1 (+0.3) IR

          NC= No Change      IR- In Range

*U/A:   Due to the slow rejection, I will no longer report on the Urinalysis.

I'll only mention two of these lab values today, the Creatinine and the Lymphocytes.

After being at 3.30 last week, it was nice to see the Creatinine drop to more of an acceptable level. As the rejection progresses, this will vacillate around.

The Lymphocytes dropped again, placing me in dangerous territory one more time. This too will likely vacillate in the coming months.

With the rejection happening, I am doing OK. I am more frustrated than anything. I won't go to any bad place mentally, because I already know that this go-around will not be nearly as bad as the first one. 

For now, my focus is just on staying positive, getting my walks in more regularly, and starting to work out--however lightly--on my Bowflex.

I am to continue with weekly labs, for now, and will report on that cardiac test once that happens.

Stay safe as the Chinese Virus begins to wind down. I hope you all get back to a normal life as soon as possible!

Good Health to All!

ScottW

Post-Transplant Update: 19 May 2020

I haven't updated anything simply because I had not yet heard back from the Transplant Clinic doctors regarding the biopsy. I have an appointment with them this coming Thursday (21 May), and I am hoping we will have an understanding of what is happening, and how we will proceed.

19 May 20 Labs:

*Creat:   3.20 (+0.27)

*HCT:   35.4 (-0.2) Low

*Hemo:   11.0 (-0.4) IR

*Lymph:   8.5 (-4.9) Very Low

*Lymph ABS:   0.6 (-0.2) Very Low

*Neut:   69.1 (-8.7) IR

*Neut ABS:   4.6 (NC) IR

*RBC:   3.89 (-0.07) Extremely Low

*WBC:   6.7 (+0.9) IR

*BUN:   46 (+4) Extremely High

*CA:   9.2 (-0.1) IR

*GFR:   20 (-3) Extremely Low

*Gluc:   114

*K+:   3.6 (-0.3) IR--but barely

*NA+:   138 (-1) IR

*MG:   2.1 (NC) IR

*Phos:   3.8 (-0.2) IR

       NC= No Change       IR= In Range

Obviously, there is lots to talk about on these labs; so let's start at the top with Creatinine.

Another big jump for no apparent reason. I can no longer correlate what this could mean because of all the other poor lab results.

The Hematocrit slid a bit further, completely erasing the gains I had seen over months.

The drop in Lymphocytes isn't surprising. With my kidney seeming to struggle, this is to be expected. Likewise with the Lymph ABS.

Even though the Neutrophils are in the proper range, I decided to add it today because I do not recalling this lab value ever being so low. It has historically hovered between 75-85. I have no idea why this change occurred, or if it will reverse next week.

Another result to slide again is the Red Blood Cells; but again, with the kidney struggling, this is not a surprise.

Lastly, the BUN and GFR. Bad, bad, bad! Especially so the GFR. The kidney is not filtering properly, and both of these results are glaring!

What this all means, I cannot even guess; but like I stated earlier, my appointment with the Transplant Clinic is on Thursday, and I will come away with a game plan on moving forward. 

I will try to get that doctor visit typed up on Friday.

Finally, if things continue proceeding towards getting re-listed for Transplant, I will have to rename the blog entries once again to reflect the next phase. It will be something along the lines of 'Transplant Rejection Update (date), or Rejection Update (date)'. I'll work on it.

So, until Friday, or so...

Good Health to All!

ScottW

Post-Transplant Update: 10 May 2020

My body is finally done recovering from the biopsy.

Prior to the test I had called the Radiology nurses station to arrange for both Zofran and Morphine should I need them following the biopsy. I did this because of past experiences with this test, and the usual extended time frames for getting in, and then post. This way, in the event of severe nausea or a raging headache, I wouldn't have to wait for a doctor to be contacted, the order written, and then the meds made available...all while I was miserable for an hour or more.

I was scheduled to arrive at the hospital at 730a (on Thursday). Because of the whole pandemic, my wife was not allowed in the hospital; which is another reason I set up those meds ahead of time as she is my healthcare advocate when I am recovering a/o on pain meds.
The check-in went smoothly, and I had a couple of blood draws for labs, and for the clotting factor test. As is usual, the IV placement needed ultrasound assist. Luckily, the IV remained patent throughout the day.
I was taken for the biopsy at 1030a--sooner than I expected!--and the tissue extraction went on without any issues, and zero untoward side effects. The first two samples taken were given the thumbs up by the hospital lab, so the procedure was wrapped up. In all, I was back in the recovery room within forty five minutes.

As is usual with a renal biopsy, you must lay flat for one hour, then remain in bed for at least three more. This is necessary to prevent bleeding from the insertion site, as well as from the kidney. That first hour was easy as I slept right through it because of the pain meds given during the procedure. After that, I ate a small lunch, then grabbed my tablet and watched a couple of movies to pass the time.

During those recovery hours I had no nausea--which was great!--but my head was another matter. It reached a solid 10, and I requested the MS for the pain, which was given. It was wonderful NOT having to wait a long time for headache relief! Though the pain med did not completely remove my headache, it reduced the pain to a very tolerable 5.

Once the recovery time was concluded, the nurses called my wife and I packed up and was escorted to my waiting car.

The next two days were nothing but recovery as my entire abdomen was extremely sore. 
I hate just laying around, but that was really all I could do. I awoke this morning still sore, but feeling much better. I should be fully recovered within the next day or two.

Before starting this entry I looked for any results of the biopsy, including a pathology report; but there was nothing. I may not know the results for another couple of days. The Transplant Clinic should be calling for an appointment this week to discuss where we go from here.

I also have my monthly infusion of Belatacept on Tuesday.

That is really all I have for now.

When I know more, I will post it.

Until then, stay safe from the Wuhan Virus as best you are able, while getting back to life once again.

Good Health to All!

ScottW

Post-Transplant Update: 01 May 2020

The week-long increased dosing of Torsemide is done, labs have been drawn, and the next step is in motion.

Over the course of the previous week, the high dosage of Torsemide went uneventfully. There were few extra side effects, and despite the diuretic, I actually ended up gaining weight. When I began this regimen, my weight was at 121.5 Kg. At first, my weight went down, then gradually increased to 122.7 Kg. This was unexpected, but also not a surprise, as a failing kidney will not always follow the expected outcome.

Also during the increased Torsemide, my morning and evening BP's decreased to somewhat acceptable levels, being in the high 120's to high 130's (systolic) in the mornings, and the high 130's to mid 150's (systolic) in the evenings. A little success here is better than none at all.

Now the labs...

30 April 20 Labs:

*Creat:   3.13 

*HCT:   36.0 (-1.3) Low

*Hemo:   11.3 (-0.4) IR

*Lymph:   17.9 (+4.0) Just Low

*Lymph ABS:   1.1 (-0.3) High

*Neut:   74.2 (-5.1) Just High

*Neut ABS:   4.4 (-3.8) IR

*RBC:   3.98 (-0.19) Extremely Low

*WBC:   5.9 (-4.4) IR

*BUN:   48 (-11) Extremely High

*CA:   8.9 (-0.5) Low

*GFR:   21 (-4) Extremely Low

*Gluc:   106

*K+:   3.4 (-0.6) Low

*NA+:   139 (+1) IR

*MG:   2.3 (+0.2) IR

*Phos:   3.9 (-0.1) IR
          NC= No Change     IR= In Range

The Creatinine was already going to artificially elevated because of the increased Torsemide. However, 3.13 seems to be a bit too high considering that my weight actually increased over the past week.
The drop in the Red Blood Cells is a surprise. I had expected for it to at least hold steady; but no such luck. This is another good indicator that the kidney is struggling.
I was happy to see the BUN drop; but it was far too little. 
And the GFR has nearly declined to the level that renal patients are placed on a transplant list (20). This number is of great concern.
On the Potassium, I expected this as any diuretic pulls potassium from the body. 

My Urinalysis had some variances as well...

Appearance:   Normal
Color:   Normal
Glucose:   Negative
Ketones: Negative
pH:   7.0 (Normal Range 5.0-8.5)
Protein:   Negative
Specific Gravity:   1.008 (Normal Range 1.003-1.030) *Historically, this value has been hovering at approx. 1.015

While the majority of the U/A is normal, the pH is abnormally high, and the Specific Gravity has decreased. Though I do not understand the correlation in whole, the general idea is that my kidney is showing signs of struggling to filter properly.

Following labs, I waited for a call from the Transplant Clinic, which arrived late on Thursday evening. The doctors agreed that the next step is to biopsy the kidney, and see what we can learn from that. 
The biopsy should be happening in the coming week.
In other news, this past week saw my headaches increase significantly. Some were TMD-involved, and others were not. AS there is a strong likelihood that this uptick of headache frequency and intensity is mere coincidental [with the kidney problems], I will observe the headache pattern in the coming weeks and note any changes to quality, intensity and how strongly the TMD is contributing. 

Lastly--and again, this may only be coincidental--I have felt abnormally tired again. I am concerned that this could be psychosomatic, so I am actively keeping my brain in a good place and active as much as possible.

When I know the date of the biopsy I will amend this entry, and note that at the bottom.

Have a great weekend!
Stay safe, and as the nation starts to return to normal, continue your social distancing protocols as much as you can. Remember, there is a strong probability of a second wave of the Wuhan/Covid/Chinese/Corona Virus which has the potential to be worse than this initial outbreak. 

Good Health to All!

ScottW

*I found out late yesterday that the biopsy is scheduled for tomorrow (Thursday, 07 May).