So people are probably wondering how we came to this, how did I come to needing another transplant and in all honesty medical jargon is not my strong point and I don’t fully understand myself but I will try and fill you in on what has happened and what the plan for my future is.
At the beginning of 2014 I had many admissions, consisting of a very stubborn water infection and pleurisy. Ever since then my Creatinine has risen as has the amount of protein in my urine. In July it was decided that I needed a kidney biopsy, the results showed that there was no rejection but there were slight changes due to scarring and the age of the kidney. (This was kind of good news, as the kidney was not rejecting.) The medical diagnosis is “graft fibrosis and tubular atrophy”
I have plodded along since then, going from 3 monthly visits to the Royal in Liverpool down to once a month visits and now weekly visits there. My Creatinine is actually not the highest it has been (214 at the minute) but the result they are concerned about is the proteinuria (leaking protein). I began suffering from edema in November and breathlessness and I am currently anaemic and had an IV iron infusion before Christmas.
The plan for now is for my results to stablise, I am having my medication tweaked all the time and I am currently suffering from hyperkalemia and acidosis. I am waiting for my Sodium to balance out before they can start me on an ACE-inhibitor to hopefully lower the protein leakage. They are also keeping a very close eye on my Blood Pressure to ensure my kidney lasts as long as it can.
I am due for an ultrasound scan on my kidney on Monday, blood tests on Friday and back to see the consultant on the following Monday. My team are fantastic and A has met what will be my surgeon for the first time this week, he shook his hand and without knowing his name asked “You don’t fancy giving her a kidney do you?” A of course said Yes but when we left the room joked “Blimey, that was a bit forward he could have wined and dined me first!”
I will have vein mapping on my fistula in my arm as soon as possible to decide on what and where my access will be (my fistula in my right arm is currently tied off, as it was causing me pain and I have previously had a failed attempt at a fistula in my left arm.) So we will see whether I need a new fistula formed or whether they can re-make the tied off one.
In the letter I received from my consultant it states: “I have painted a suitably bleak picture for Holly about the future of this renal transplant and I think it is sensible we make plans for future access should the need arise. She is looking at a wait on the national waiting list and will require an assessment of her antibodies and I have explained that finding her a second kidney, and re-transplantation is undertaken at an increased immunological risk and will require a more intensive immnosuppressive regime.”
So in short, 6-12months from now my kidney will eventually pack in and I will be back on dialysis.
I promise in the next few weeks I will write a happy blog… maybe one with lots of pictures!!!