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.
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.
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.
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
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
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