Sorry for the late update, hehe this seems to be becoming a trend quite quickly. Just had a lot on my mind for the past few days.
Anyway, so I guess your all wondering why we didn’t end up going through with the kidney transplant.
I will try and explain as far as I can. I am not going to go back in to the facts regarding limits of antibodies and the rest, you can read all of that here.
So regarding the transplant, I was going through plasmapheresis treatment in order to bring down the antibodies within my system to a level that would not be detrimental to the transplant kidney. With the antibodies I had initially this was a certainty. This is the reason for us starting plasmapheresis in the first place, the efficiency of the treatment was to be determined by a group of tests, a CDC cross match, an elysa cross match and a HLA DSA test. Essentially the cross-matches both showed positive and the HLA was way above the DSA threshold of 500 with 5 different antibodies. After all the treatment the cross matches were both returning consistent results of a negative cross-match, which was exactly what we were looking for, however the HLA tests came back completely different every time. The firs time we got results for the HLA, the antibodies were showing that they had increased instead of decreased, this was no the expected result as the treatment I was going through is made to reduce antibodies, I then went for another 2 treatments, and had a second blood test done, This blood test reflected that the antibodies in my system were almost completely non existent on all counts.
This was exactly what we were hoping for and expecting, however the doctor said he would prefer to do another test, this meant I would have to go through another set of plasmapheresis, but I was OK with that because I understood that having two completely conflicting results was not the best way to indicate whether the treatment had worked. I then did the extra treatments, and on the 20th of august we did yet another set of blood tests. after waiting the day out, my doctor called and explained that the bloods had come back and that once again the cross-match bloods were consistent and negative, what we expected. However the HLA tests had come back, and they were reflecting results similar to the results that I had before starting with the treatment in the first place, with some exceptions, what they showed was that one of the antibodies was non existent, one other antibody was in the low 200’s and the other three were all sitting between 6000 and 10000. The doctor then proceeded to explain that he was unsure as to whether the blood tests were consistent, and that we could still take the chance with transplant because they can still do more treatment afterwards to kick-start the kidney if it stared failing. He then went on to explain that we as a family should discuss it and make a decision as to whether or not we would like to go ahead with the transplant.
[image_frame style=”framed” align=”right”]http://theodorou.co.za/wp-content/uploads/2012/09/postponed.jpg[/image_frame]
The next 2 hours were quite long and awkward, there was a lot of information to digest and essentially I had to make up my mind and give the doctor the decision we came to. So I wont go through the whole thought process but in the end I decided that I would not go ahead with the transplant for a few reasons. I don’t mind taking risks and I was going to take risks with this transplant in the first place, this however seemed to be going more towards the gambling territory than the risk territory. After all I don’t mind taking risks when they can be plainly explained and laid out in front of me, in this situation there was no end to the issues and no real indication of whether the transplant would even work. The second reason was that, even if I did more treatments and got a result that reflected an amazing result (like all antibodies being gone), I would not be able to fully trust in that result as the test seems too inconsistent and unreliable to be able to make an accurate decision as to whether we should transplant or not. One of the last reasons were, if I did this transplant and lost the kidney, I would not be eligible for another transplant for any reason. These reasons as well as other reasons going through my head, I could not consciously make a decision that would put myself and my brother at risk, for such a slim chance to have a working kidney.
So what does this mean? no transplant?
Well for now no, life back to normal for me, well as normal as my life has been for the past 6 and a half years. However we saw the doctor on the 12th of September, and he says there is no reason why we can not try to go for transplant again. It just wont be any time within the next few months. In the mean time, I have to go for full body radioactive scans to find the missing parathyroid, that is causing my bloods to be so bad. I also have to go for a venogram to check my fistula as it looks like there is a possibility of blockage which seems to be causing an aneurism and it is growing quite big really quickly. I have also discussed moving my dialysis to the evening shift to see if i can get some semblance of a week, I am on a waiting list for this. I am also talking to a dietician to try and get an extremely strict diet to try for a month and see if the way I have been eating is an issue or not.
Anyway, that’s the story so far, posts on medical issues will be more spaced out as there will not be many changes now that I am back on dialysis but i will be trying to update the site as we go for the different tests and procedures.