Wednesday, May 30, 2018

Post-Transplant Update: 30 May 2018

A quick update today as I am readying for a bit of vacation time...my first in nearly a year, and my first time out of my general area since last July.

After my first infusion of Belatacept, I had no apparent side effects. Yesterday was my second infusion, and I am feeling just fine once again. 

My labs have been trending in the right direction this past week. The biggest two are Tac and Creatinine. My Tac dropped to 4.8, and Creatinine fell to 3.28...the best reading in months.

In two weeks I begin to wean off of the Prograf, with the goal of zero Prograf by the time I do my final twice-monthly infusion. At that point, my Tac reading should also be near zero. By then, the Creatinine should also be way down. Just what my new Creatinine low level will be is an unknown, so I cannot guess a final number.

All in all, things are going well. I feel a bit stronger this week, and my average BP is coming down nicely. 

The Prograf tremors have increased exponentially; sometimes being so bad that I spill and liquids in glasses I have filled up, or am unable to keep food on my fork until it reaches my mouth. It is incredibly frustrating. However, at my Kidney Clinic appointment yesterday I asked my doctor if the tremors were so bad because the Prograf is not being used by my body as much due to the Belatacept. He stated that this was indeed the case and that once I am off the Prograf entirely, the tremors should cease altogether. (YAY!)

That's all I'm going to write today. Too much to get done before I leave in the morning...

I will post again shortly after I return on the 11th of June.

Southwestern Colorado awaits....

ScottW

Wednesday, May 16, 2018

Post-Transplant Update: 16 May 2016

A bit of good news last week...

I remembered that after Kidney Clinic there was still a question I'd forgotten to ask my doctor and we happened to run into him on another part of the IMC campus. Having the opportunity to ask my question, I took it. The question..."Now that I am six full months post-surgery (Hernia repairs), when can I start exercising?" The doctor stated that 'so long as you have the energy, and don't push myself too much, you can start at any time.'

This is a day I have been waiting months to hear! Unfortunately, due to my ongoing exhaustion, getting started will take more time; but, once I begin having the energy, I will get started. In the meantime, I will come up with a schedule of exercises to begin the long journey back to better physical health.

Now, on to the infusion... 

Belatacept

Mechanism of Action: "Fusion protein which acts as a selective T-cell (lymphocyte) costimulation blocker by binding to CD80 and CD86 receptors on antigen presenting cells (APC), blocking the required CD28 mediated interaction between APCs and T cells needed to activate T lymphocytes. T-cell stimulation results in cytokine production and proliferation, mediators in immunologic rejection associated with kidney transplantation."

What it is: "NULOJIX® (Belatacept) is a prescription medicine used to prevent transplant rejection in adults who have received a kidney transplant. NULOJIX, an intravenous infusion, is used with corticosteroids and certain other medicines.
Model Portrayal
It is not known if NULOJIX is safe and effective in children under 18 years old or in people who receive any other organ transplant.
NULOJIX should only be used in people who have been exposed to the Epstein-Barr virus."

Dosage and Schedule: Your doctor will prescribe the dosage and schedule to be used. Application is by IV Infusion ONLY.

Side Effects--Possible, but very rare): "All drugs may have side effects. However, with Belatacept, many patients have no, or very few, side effects. Call your doctor or seek medical attention if of the following side effects bother you or do not go away:
-Headache
-Dizziness
-Constipation
-Diarrhea
-Upset Stomach/Throwing up
-Abdominal pain
-Joint pain
-Back pain
-Unable to sleep
-Anxiety
*There are other possible side effects to using Belatacept. However, only 1.5% of patients using Belatacept report these more serious issues.

For me, I will start my infusion Tx (treatment) at 5mg/Kg. My schedule will be 1x/2 weeks for 6 Tx's. All of these will be given at the IMC Infusion Center.

After the first six Tx's, I can go to my local hospital for once per month infusions (dosage unknown at this time). These infusions will occur every month for the life of the kidney.

16 May

My first infusion of Belatacept went very well! 

I actually spent more time waiting for the infusion therapy to start than having the infusion itself. As I thought, the dosage was 5 mg/Kg in a 100cc bag of saline. The drip time was a mere thirty minutes.

As for the infusion process itself, once you check in at the Infusion Center you are taken to a shared room with several other chairs (and possible a bed). Your vitals are taken, meds are reviewed and an IV is placed. With my arm so beaten up from the biopsy, the nurse took his time finding the right vein, then placed the catheter expertly, hitting a viable vein on the first shot. (Thank goodness!) 

There are numerous rooms for cancer and other infusion therapies, and the nurses are spread a bit thin, so my therapy didn't start for over an hour after I checked in. Next time, the wait should be shorter since there will be little information to review.

I was told that if I were to have any initial side effects that these should happen within the first few minutes. These could include nausea, headache, cardiac palpitations, dizziness and excessive tiredness. I experiences none of these!  

The half hour infusion of the Belatacept went quickly, and I was soon on my way home. Since the treatment I have had zero apparent side effects of any kind. Hopefully, this will continue following my next infusion; which will occur on the 29th of this month.

There was nothing scary about the infusion therapy, especially since my wife and I had done so much research on the Belatacept on websites such as the manufacturers' page, the New England Journal of Medicine, The Mayo Clinic page, etc. If you do your own research, please only trust reliable sources such as these. Going to Wikipedia or other non-reliable sites can have false or incomplete information on this or any meds or treatments.

So there you are...a successful first Infusion Therapy.

And with that, I shall wrap up this entry.

I hope that all is well for each of you, my readers.

Good Health to All!

ScottW








Friday, May 11, 2018

Post-Transplant Update: 11 May 2018

The biopsy last Friday came out well, despite an unforeseen complication.

I went into the biopsy having a terrible TMD headache. It ranked a solid 10, and I had already taken pain meds that morning; though they failed to put a dent in the intensity of the headache. This would later come into play.
The nurses hard a very difficult time getting an IV in my L arm. The first try resulted in a tissue infiltration. The second resulted in a viable line that blew just as a BP check was being run. This caused the vein to blow and a lot of IV fluid leaked into the site which caused a swelling near my elbow that was the size of half a softball. The third try was in my L hand and after initially hitting the vein, the catheter punctured the vein. On the fourth try, another nurse tried just below my wrist and the exact same type of infiltration happened. The fifth attempt finally met with success. This IV placement was about halfway between my wrist and my elbow. So, now my L arm is beaten up once more...

I went in for the renal biopsy at around 1230p. Everything there went well. The doctor had to get three samples in order for a decent tissue aspiration to be had. Once that was accomplished, I was taken back to the recovery room.

This whole time, my headache was ramping up, becoming more and more intense. While laying in recovery, there was a ceiling light that shone directly in my eyes, causing even more headache pain. I ended up putting on sunglasses in order to try to stop the growing pain. Meanwhile, the nurse ordered a morphine injection to try to stop the headache.

The post-biopsy routine includes approximately four hours of laying still. The first two hours are flat on your back, and the last two are in a semi-recumbent position. At that two hour mark, the headache, still growing despite the morphine, finally cause  me to do something that has happened only one time in the thirty two years I have had TMD. Just after I sat up into the semi-recumbent position I suddenly grew incredibly nauseated and within seconds, I was throwing up into an emesis bag. Since I had not eaten anything since the previous night, all that I got out was bile and water. Unfortunately, this was not only time that would happen.

After my stomach somewhat settled down, the nausea increased again and about and hour later, I got rid of more bile and water. This time however, the nausea failed to decrease. At four hours I was still horribly nauseated. Around this time the biopsy result came back, and it showed no further scarring of the kidney! (What a relief!) The Transplant Team docs told me that a med adjustment would be proposed at my regular Kidney Clinic appoint scheduled for the following Tuesday. So now, all I had to wait for was the follow-up renal ultrasound to look for internal bleeding. This happened shortly after 5p, and the supervising doctor came in at around 530p to tell me that the kidney and surrounding area were clear of any bleeding.

Still terribly nauseated, I got ready to go home. 

I made it as far as the car before the nausea became overwhelming once more. Just before taking off, I threw up for the third time; and again, it was all bile and some water. All the throwing up was unbelievably hard on my body, and I was thoroughly exhausted by this point. The ride home would be challenging, to say the least. While we missed most of the rush hour traffic, all the stop and go nearly sent me over the edge several more times in the hour it took to arrive home. Luckily, that third emesis was the last time it would happen; though, the rest of the evening was quite miserable.

The last time my body reacted like this to a TMD headache was around 1998. I had been working all day with an increasingly terrible headache and decided at around 300p that day to leave early...which I never did. On my drive home the pain--which I had zero strong meds for--increased exponentially. About halfway home, I had grown increasingly nauseated, so I pulled over on a little-used exit, parked on the side of the road, and promptly threw up two times. Once done, I continued on my drive. However, about fifteen minutes later, I had to pull over again, and threw up three more times. Once I started driving, the pain had become so intense that, to this day, I cannot remember the last twenty minutes of my drive. I only know that I had made it home safely. 

So, after all these years, I was surprised that my body had responded to the headache like this. I initially thought that I'd had a reaction to a procedure med; but I've had that test--and all the meds three times previously with no such reaction. The only thing different in this case was the awful headache I already had when I went in for the biopsy.

Anyhow, while the test came out with a terrific result, the day ended up quite miserably.

Over the weekend since the biopsy, my body was completely wiped out. First from the TMD headache--which had finally subsided by the next morning--and also from the pain of the test itself. The site of the aspiration needle insertion is always painful for at least several days afterwards. Then, add in the stress on my abdominal muscles from the vomiting and you have a long weekend. 

At Kidney Clinic on Tuesday I finally learned about the new med that the Transplant Team wanted me to start using in order to try to correct the worrisome labs that continued. It is called "Belotacept," and is an infusion med that will end up replacing the Prograf. Initially, I will receive an infusion once every two weeks for around six weeks. After that, the infusion will happen just once every month...forever. Meanwhile, the doctors will give me a taper schedule to reduce, then eliminate, the Prograf by the time I am getting the Belotacept infusion once per month.

I will still be taking all my other meds; I just will be completely off the Prograf. 

And by the way, my daily dose of the Myfortic has been upped once again going from 540 mg 2x/day to 720 mg 2x/day. This is the maximum dosage of Myfortic I will be taking.

I do not yet have all the info on Belotacept as I have been exhausted all week. I will gather the info soon and share it on my next blog.

As far as other info, I will give you my two latest blood draw results and my thoughts on those, then wrap this entry up.

07 and 10 May 2018

*Tac:   8.4  (+2.2) High          7.9  (-0.5) IR

*Creat:   3.49  (+0.09) Extremely High          3.72  (+0.23) Extremely High

*CA:   9.8  (-0.1) IR          10.0  (+0.2) IR

*RBC:   3.04  (-0.09) Very Low          3.05  (+0.01) Very Low

*WBC:   6.3  (+1.6) IR          6.0  (-0.3) IR

*HCT:   26.7  (-1.2)  Extremely Low          27.5  (+0.8) Extremely Low

*Lymph:   9.1  (-1.9) Low          8.6  (-0.5) Low

*Lymph ABS:   0.6  (+0.1) Very Low          0.5  (-0.1) Very Low

*Neut:   82.1  (+2.3) Very High          78.8  (-2.3) Very High

*Neut ABS:   5.1  (+1.4) IR          4.8  (-0.3) IR

*GFR:   19  (-5) Extremely Low          17  (-2) Extremely Low

*BUN:   48  (-3) Very High          49  (+1) Very High

*Gluc:   100          104

*Phos:   3.2  (-0.3) IR          3.3  (+0.1) IR

*Hemo:   8.7  (-0.2) Very Low          9.0  (+0.3) Very Low

*K+:   5.0  (-0.1) IR          5.1  (+0.1) High

*NA+:   136  (-2) Low          140  (+4) IR

*Prot:   6.4  (+0.1) IR          6.6  (+0.2) IR

*MG:   1.6  (+0.1) Low          1.5  (-0.1) Low

*BK:   Neg          Not Taken

*CMV:   Neg          Not Taken

Additionally, Urinalysis consistently shows negative Ketones (pr: Key-Tones), which is great news. The presence of ketones indicates diabetes, which can develop as a result of the anti-rejection meds. If this ever changes, I will note it on a future entry.

So, the labs show both good and bad results. The ones I am particularly interested in at this point are the Red Blood Cells and the Hematocrit. Both are very or extremely low and confirm what I have suspected since the rejection in March...that the kidney, which regulates the production of Red Blood Cells in the bone marrow, is having a difficult time getting that done. This is likely the cause of my ongoing exhaustion since I came home in early April. Hopefully, the Belotacept will help kick the RBC production into gear. If not, something else (other factors) could be in play. Time will tell.

So, that's the latest. I will write about the Belotacept and my first infusion therapy after next Tuesday.

Until then...

Good Health to All!

ScottW


Wednesday, May 2, 2018

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!