So these past few days have been confusing…
We were all hoping for transplant to happen on Tuesday, and as you all know by now it didn’t.
So here is what happened. Without the plasmapheresis treatment I explained in an earlier article, I cannot go for a transplant. Essentially we are forcing a negative crossmatch between my brother’s kidney and my body. The plasmapheresis treatment I am going through removes the plasma from my system and then replaces it with only albumen and sometimes they put a slight bit of fresh frozen plasma in as well, for a basic idea, they remove approximately 3600 ml of plasma from my system and replace it with 3000ml of albusol and 600ml of FFP (Fresh Frozen Plasma). Your plasma and bone marrow are where most of your antibodies, and antibodies memories are stored, so by removing the plasma they are removing white blood cells as well as a lot of the antibodies that are already in my system, they need to do this because with my antibodies at the levels they were, I could not get a negative crossmatch whether I was looking for a kadaver or living donor kidney. I was number 1 on the A+ kidney only list for over 3 years and they could not find me a match because of this.
But why are your antibodies so high you might ask?
Well about 6 years ago after I lost my mothers kidney, I had gotten septiciemia, I went through multiple tests over 2 weeks in order to figure out where the scepticemia was coming from, until evetually they realised that it was in my transplant kidney. My transplant kidney was blocked and had gotten infected, this in turn kept infecting my system with virus after virus. Eventually they removed the transplant kidney, however my HB was extremely low at the time and it is excesivly risky to have an operation with low HB, therefore they gave me repetitive blood transfusion during dialysis for about 10 days. The doctors do inform you that with blood transfusions you gain hightened antibodies and that they will remove you from the transplant list for atleast 3 months untill the antibodies subside. In my case I got an extreme amount of antibodies, the only diffrence is that the antibodies did not go down again. These blood transfusions coupled with the prior kidney transplant put my antibodies so high that there is no way to get a kidney that your body will not reject.
This is where the plasmapheresis treatment comes in, this treatment is relatively old in what it is used for, although it is a new form of treatment when used to desensitize, presensitized people (like me) in order to force a transplant.
Ok so the next hurdle we had to overcome before starting this treatment, was the psychological aspects. These included having to discuss the fact that plasmapheresis and the treatment needed to make the kidney transplant work, are extremely new and extremely risky. We had to have the possibilities laid out before us and what they would mean, as well as the risk factors.
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This is not a normal kidney transplant. In a normal kidney transplant you find a match or get called when you are found a match with a kadaver, you do your workups and you start transplant. You are then Immuno suppressed via medication to a point that the doctors are happy that yur body will not attack the new kidney. You are then informed of how to dispense and handle your medicine and how you will have to take preventative measures in cleanliness and procedures o follow in order not to get sick because of the lowered immune system. It then becomes a balance of controlling how much they can reduce the immuno surppressives without causing your kidney to start failing, and not leaving you over suppressed because infection can be just as detrimental. This also means that at any time that something gets bad (in terms of infection) they can at least stop the immuno surppression as it is based on medication. and your body can help fight of the infection, possibly at the cost of the kidney. This would be if the situation get bad enough to be fatal without taking the steps to boost your immune system.
With the plasmapheresis, they are removing the antibodies from the cellular level, this is over and above the normal immune suppression given for transplant, in addition to this they remove your immune system completely with more drugs just before the trasplant. This would be an injection I have not received yet, and what it does is wipes the antibody memory from your system and lasts for at least 3 months. That means if things go bad, the doctors can not just stop the immuno surppressives to help your body fix this problem.
How does this all connect?
Well we were told the following. If I were to tay on dialysis I would probably have a heart attack by the age of 30-35 as my body is not coping well with dialysis. the doctors words were “If you want to see grad children you need a kidney”. So it was either don’t take the kidney, or try take a chance on the kidney. Also In my situation if I were to take the chance for kidney transplant, Its chance of failure would be 4x – 6x higher than a normal transplant, on top of that it was explained that with no immune system they cannot predict what will happen with the simplest of infections as they can morph. this means that something as simple as flu could become deadly and that if we cannot beat these infections with antibiotics, there would be no other options to pursue and the infections could be fatal.
This is where the psychological part came in to play, essentially after having everything explained to us the doctor was saying, you can stay on dialysis and have a limited lifespan, or take a chance on a kidney transplant in order to have a much longer life, but with the risks involved with the treatment i would have to undergo in order to get the kidney. These risks include loosing the kidney on the table, loosing the kidney within the first 3-6 months and most grimm of all, death. You have to remember though doctors always give you the most dire circumstances, or worst case scenarios. Also what he was trying to say i that, it is only in very rare cases that they reduce someones immune system to almost nil and that there is a lot of unknown when playing with peoples immune systems at these extremely low levels, and that we must understand that there are unforeseen things that can happen.
Ok sorry for the essay, but This is where I will explain everything.
I am not angry that we did not transplant on the 14th of august as planned. It was explained to us before that there was a possibility that more than 5 treatments of plasmapheresis would be needed. It was also explained that if the mfi of the Donor Specific Antibodies (DSA) were too high without enough of a change then we would not transplant, and if they were within specific limits, mentioned in this article, then we would go ahead with transplant.
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On monday we took bloods in order to get the tests done and the results were not promising, in fact they were downright confusing as the point of plasmapheresis was to reduce the antibodies, not increase them. The tests we did receive showed that 3 of the 4 worrisome antibodies had gone much higher than they were initially as only one of the 4 had gone down. On top of that, the sisters at Glynwood had taken the wrong bloods from both me and my brother, they took two red top tubes from each of us, but for all the tests we needed, they were supposed to send 7 red tops from me and 6 short yellows and 2 red tops for my brother. this meant that half the tests were not done, so after waiting a day on tender hooks for results, we received news that we would not be transplanting. But this did not mean that the bloods were correct either and this is why i trust and respect my nephrologist Dr V Rekhviashvili. He suggested that he did not believe that the bloods were correct, and stated that he felt they were probably erroneous, he also said that it could be possible that the bloods were true, however he could not tell for definite as they are still new to this form of desensitization in order for transplant. In turn he suggested that he would be much happier to get the bloods done again, and done at a different lab in order to crosscheck the results. in order to do the test again I had to have another plasma, as well as the fact that another plasma would get me closer to a negative crossmatch if i was not there yet. For this reason I stayed in hospital for that evening and had another plasma on tuesday instead of transplant, with the tests to be redone on wednesday.
We finally received results at about 6 o’clock wednesday evening, the results were completely different to the results of the earlier tests done on monday. these results showed negative T-cells on both CDC and Flow-Cytommetry crossmatches and positive crossmatches for B-cells, Awesome news! On top of that the mfi results for all the antibodies were showing 700 – non existant, this was even more awesome news. problem now was that we had two completely contradictory results. Dr V Rekhviashvili explained that we could have done transplant on thursday based on those results but it would be better to be precautionary as we are playing with vey risky procedures and to do another test.
What we have to do is have a transplant as soon as the results are at the correct levels, this meant that for another test to be done we would have to wait a day, the issue was that the transplant team was already booked for friday transplant and that they were not working the weekend because they had 4 transplant scheduled to be done between tuesday and friday (they ended up shifting one from friday to thursday meaning they did two on tuesday and one on friday). In turn this meant that we had to postpone our transplant to this week coming (the week of the 20th of august 2012). Becasue we had to wait til this week we can only do the blood tests during the week, making Monday the 20th the first avalable day for tests to be done, again thi meant that I had to carry on with the plasma exchanges because we cannot afford for my immune system to build itself up again, and on top of that with the good results we could make them even more concrete with two more treatments.
The treatments were scheduled for Friday and Sunday, with bloods on Monday and dialysis Saturday and Monday. This meant that Thursday was essentially a free day and my nephrologist suggested I go home in order to get in to a better state of mind, and come back and be admitted for the long haul from friday. Hehe Dr V Rekhviashvili knows me too damn well!
thursday at home was the best thing that happened to me it allowed me to asses my position and reinforce my positive position in believing that this transplant wil be a success, Especcialy seeing as Im getting Supermans Kidney!
Thanks Pavis, if I knew it would take this much to get me ready to get your super kidney I might have thought twice!
love you bro!
Anyway it is now Sunday the 19th of August, I have now had 8 sessions of plasma and the situation is as follows. Tomorrow they take bloods and we get back an Awesome result saying that there are NO ANTIBODIES! and that both T and B cells are negative! of-course they could come back with bad results confirming the initial results from monday the 13th, although I dont believe this would be the case, although if it is they will just stop te transplant and we will have to make another plan as that would mean that plasma cannot work. In the end we get a final answer tomorrow, but like I said, I believe it will be AWESOME!
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I would like to thank you all for your care and support!
It definitelly makes it easier when you know that there are so many people out there behind you. I am happy and proud to have a family of this magnitude.
thanks To My Mother, Father, Pavlo and Ioanni for dealing with my shit and I love you all more than words can express.
On a side note, keep in mind you can register on the site and post in the comment section below to ask any question you want or discuss things woth other registered users, including me!
Also my little brother Ioanni will be live tweeting events during transplant via my account @stellarra and possibly putting an update on my website after said transplant.