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

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

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

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

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!

Post-Transplant Update: 18 April 2018 "Another Rejection Episode"

My last brief post stated that I was going into the hospital with a very significant spike in my creatinine level [going from 1.95 up to 2.75].

It turns out that I had entered a full-blown transplant rejection episode.

While my rejection last Fall was more about an occlusion of the renal artery related to scar tissue development from the transplant itself, this rejection was entirely about receiving damage to the kidney, and having to stop what might have been a strong potential of losing the kidney entirely.

Though I was NOT feeling bad at all, I had had several weeks preceding the rejection that showed upwards trends in weight (108 kg's to 120 kg's), blood pressure (120's systolic in AM to 140's at PM to 130's+ in AM and 170's+ in PM), as well as increases in non-TMD headache incidences and intensities, and other subtle changes that, looking back on, were terrific indicators that something was changing, but which at the time just seemed non-descript when examined individually. Everything was still in acceptable ranges until very close to the spike in creatinine.

These changes just happened to coincide with the change the doctors made in switching me from the Celcept to the Myfortic, so no one thought the overall picture had changed as the med change naturally precipitated similar changes in my body, but were supposed to do so without the creatinine spike and subsequent rejection. As the Kidney Clinic lead physician stated, "it was just a massive coincidence that created this perfect storm of a rejection that only appeared to be about the medication change on its surface."

It was lab work that caught my kidney disease in the first place, and lab work that caught the rejection, too. 

So, here's what happened once I got the call to report to the patient tower at IMC...

First, you have to pack for a possible long stay. Personal toiletries are essential! Then, get yourself to the hospital as quickly as you are able. Once I got to the Transplant Floor you know that you've been there too many times when the nurses and assistants seated there greet you by name! :-l  After getting to my assigned room, it was the usual flurry of settling in, getting vitals, lab draws (yes, that's multiple blood draws), IV placement, current med list review, doctor visits etc.

That first evening I was sent to do a renal angiogram/arteriogram to check on the verity of the renal artery just to rule out another occlusion. This test came back showing  a mild 15% occlusion; not enough to either cause the creatinine spike, nor cause any vascular issues with the kidney itself.

The next day had a scheduled renal biopsy. This test checks the health of the kidney through the collection of renal tissue via needle aspiration. For those who are squeamish about needles, I won't go into this test too much. Let's just say no one really wants a needle that long poking into you...ever! In the test, the doctor usually obtains one or two tissue samples. My doctor had the thought that, in order to be more thorough, he'd collect four samples in total. The test itself doesn't cause too much residual pain, but it leaves a nasty bruise at the site. 

Anyhow, the test results came back the next morning showing scar tissue damage to the kidney of between 15%-25%. Without actually examining the whole kidney (inside and out), only an approximate range can be given. The scar tissue--or more accurately, scarring of the nephrons and tubules--is the end result of a loss of transplanted kidney function. While the kidney can recover, it is rare to regenerate all the lost tissue. So, I have lost a portion of the kidney, but hope that some of it can be corrected.

Because of the rejection, the doctors, in order to protect the kidney from further loss, decided to go back to the beginning and crash my immune system once more. So, two days after going into the hospital, I was put on the first of five days of anti-thymo infusion treatment (6 hours each) that did the job of putting me in immuno-compromise for a second time.

Anti-Thymo treatments can cause numerous side effects including headaches (yay..), excessive tiredness, changes in appetite, excessive thirst, etc. My body decided to go with a day and a half of systemic hives and overall body rash; which was so much fun!  :o(  

Lots of Benadryl (anti-histamine) followed, along with lots of extra sleep, which is a natural side effect of the Benadryl itself. 

Along with this, I was again given three consecutive days of 500 mg's of Prednisone, put back on other immediate post-transplant anti-rejection meds and started receiving insulin to balance out the resultant blood glucose problems that are a part of immunosuppression. More prednisone and a taper schedule followed, as did a once-daily infusion of Lanusta to help balance my widely swinging blood glucose levels and high doses of insulin.

All of this led to my labs being unbelievably out of whack, but slowly showing stabilization.

For those who do not know or recall, high doses of prednisone cause extreme water weight gain. By that Friday I suddenly went from 120 kg's to over 126 kg's. By the time I lefty the hospital, I was back down to 121 Kg's.

In the days that followed, I quickly learned that kidney patients in rejection have their vitals checked every hour of every day, blood glucose levels checked every two hours of every day, and twice-daily lab draws. Plus, between all of those times, I  received nurses visits at least twice per hour, and nurses aid visits as often. Getting any decent sleep on that schedule is pretty much impossible, so I ended up taking numerous 15-20 minute power naps every day.

I understand the need for so much attention as an organ rejection can change things within minutes for any patient, so nursing attentiveness is absolutely essential. Remember, at the IMC Transplant Floor, all personnel are specifically trained for treating transplant patients. The constant care is another aspect that makes the transplant team at IMC so phenomenal!

The only other invasive procedure I had to do was the placement of an internal jugular IV and blood access port. This had to be done after three failed IV placements in my L arm due to infiltration. Since we still cannot use my R arm, and there are so few good or even just decent access points on my L arm, I asked for a neck line, rather than trying to make another peripheral line limp along. I do not mind a neck line, and actually prefer one to anything in my arm. They are never painful, never get in the way and access is very rarely compromised.

While in the hospital I was placed on a full food renal diet, which was sorely lacking in flavor. The food wasn't terrible; but is wasn't good, either. Don't get me wrong...IMC has fantastic on-site food on the regular patient menu! The renal diet lacks sodium making foods taste bland. I ended putting pepper on most main dishes just to get some flavor out of things. At least I was able to eat three meals each day. 

My hospital stay lasted a total of eight days.

With my immune system down, my red blood cell count way down, and my body getting readjusted to meds and wide swings in water gain/loss, I have spent my time since being released feeling extremely tired, not sleeping well and being in a general lethargy.  

This nearly one year since my transplant has been extremely rough on my body, and for the first time since this all began eight and a half years ago, I finally had my first day that I seriously struggled mentally. The weight of two major surgeries, two rejection episodes and so much pain just took their toll, and I had a stress release moment of lots of crying. 
It left me wiped out, which is good. Tears release chemicals that relieve stress and tension, so are beneficial. It just gave me enough relief to get my mind back to a stronger place. My wife, always joking, told me, "One breakdown in eight and a half years...You really need to step up to the plate!"  :o)

Though I won't go over my labs right now, they have been all over the spectrum since the rejection. The doctors told me it will take time to get everything to settle into place. Since I'm not really going anywhere anytime soon while my immune system recovers, I have lots of time to wait for those lab values to settle down.

And, I think I'll end this post here. I really don't want to get into the post-hospitalization things right now. I'll save that for the next post.

Speaking of the next post, it could again take time for me to type it up as I remain so tired every day. Please be patient while I get that next one done.

Good Health to All!

ScottW