Post-Trannsplant Update: 02 May 2018 "Rejection Recovery"

**Reminder...This blog reflects my individual experience with polycystic kidney disease, dialysis treatment, renal transplant and post-transplant life. How any one person does throughout their own treatment etc, is purely their own, and this blog is meant only as an illustrator of my experience. Please, always follow the instructions and advice of your personal physicians, dialysis nurses and personnel, and all others involved in your physical care. Only they can know the best treatments and meds for you! Thank You. 


My post-rejection recovery has been anything but good. My prednisone taper schedule was, fortunately, short, and I was back to my usual 5 mg/day within two weeks. However, the prednisone puffiness was--and is--just as bad as if the taper had taken three months. My wife is calling me a 'Puffy Baby Man!" due to the evident puffiness around my face and neck. This will take time to go away. When I had the last prednisone infusion in September, my face and neck took about a month to return to normal once the minimum prednisone level was reached. So, around mid to late May should find me looking better.

As the prednisone decreased, so did my use of the insulin and Lantus injections.  As of today, I have stopped taking the Lantus, and most insulin. I will still be checking my blood glucose levels (BGL's) four times each day...and take insulin if needed...but for the most part, I am done with the need for blood glucose corrections.

Along this line, I noticed  that once my insulin use had decreased that I began feeling nauseated 24/7. I couldn't eat (or not eat) without feeling terribly nauseated, and couldn't have anything on my stomach. This went on for a week and a half before I finally clued in that, without the higher insulin injections, the daily Lantus use might be causing some kind of imbalance  in my body. So I spoke with my transplant coordinator about it. She checked with the team pharmacist about it and was told to have me discontinue both the Lantus and the Insulin, but to keep checking my BGL's. Today was the first day without the Lantus and the nausea is non-existent. (YAY!)

Since I came home from the hospital my labs have been anything but consistent. On the good news front, some lab values are getting back in line with norms. As far as the creatinine and Tacrolimus numbers, these are now complete unknowns as to a norm. This is because once a transplanted kidney has had a rejection, the kidney develops scar tissue inside the nephrons and tubules, and the old normal levels for both the Tac and Creatinine are now out the window. Time will tell what my new norms are.

The following at just two examples of my now twice-weekly labs...

05 April 18 (one day post rejection)

Tac:  7.6 IR

Creat:  2.52 Very High

CA:  9.4 IR

RBC:  4.23Low

WBC:  7.50 IR

HCT:  35.8 Low

Lymph:  1  Very Low (This is normal after Thymo Tx)

Lymph ABS:  0.1  Very Low (Again, normal)

Neut:  89  Very High (Normal post-Thymo)

Neut ABS:  6.9  Very High

GFR:  28  Very Low

BUN:  80  Extremely High

Gluc:  107

Phos:  3.2  IR

Hemo:  11.9  Low

K+:  3.9  IR

NA+:  135  Low

Prot:  6.2  IR

MGS:  1.9  IR

BK: Neg

CMV: Neg

23 April 18

Tac:  8.1  Slightly High

Creat:  3.54  (Extremely High)

CA:  9.5  IR

RBC:  3.44  Low

WBC:  3.9  IR

HCT:  30.8  Very Low

Lymph:  5  Very Low, but better

Lymph ABS:  0.2  Very Low, but better

Neut:  78  Very High

Neut ABS:  3.0  IR

GFR:  18  Very Low

BUN:  70  Extremely High, but better

Gluc:  104

Phos:  4.4  IR

Hemo:  10.1  Low

K+:  4.9  IR

NA+:  139  Slightly Low

Prot:  6.1  IR

MGS:  1.8 Slightly Low

BK/CMV:  Not Checked

Following my hospital stay, I remained on Lasix for three weeks in order to reduce edema caused by the prednisone. Lasix, when used in high dosages, artificially elevated the blood levels of creatinine due to fluids being pulled out of the muscles. As of my latest labs (drawn yesterday), my creatinine level remains high despite the now complete lack of Lasix in my body. Because of this, the doctors at the Transplant Committee want to do another biopsy in order to rule out any further rejection issues. I will be doing that test this coming Monday, 07 May.

Yesterdays labs showed a drop in both my RBC's (3.22) and HCT (28.4). Both values confirm that my kidney is having a hard time keeping up with the production of red blood cells and as a result, I am become more and more tired; despite the better sleep I have started to have. The drop in both values could be another possible sign of further rejection. Another good reason for having another biopsy.

As far as my latest surgery pain, this has reduced to only the mid-line of my abdomen. The scar itself has begun to harden, and the numbness throughout my abdomen has been slowly receding towards the mid-line.

The headaches continue...as always. Lots of TMD involvement lately, but I am able to keep them under control...somewhat.   :oi

That's all I'm doing for now. If I think of anything else, I will add it below.

I'll report on the upcoming biopsy on Tuesday, or so.

Good Health to All!

ScottW


(03 May)
**I just saw the lab results from this mornings' draw and the news is NOT very good.
Though I do not yet have the Tac, the Creatinine jumped to 3.4, the RBC fell (again) to 3.13, the HCT fell to 27.5, the GFR dropped to 19 and the BUN increased to 51. All the important numbers are trending in the wrong direction.  So, I was able to reschedule my biopsy to tomorrow (Friday). Needless to say that getting it done sooner is extremely important!