This is definitely not a post I wanted to make, but here it is: I had rejection of my transplanted kidney.
Roughly a couple weeks ago I started having flu-like symptoms, nothing major, some nausea, chills, extra fatigue, etc. Then late last Friday, February 22nd, into the 23rd, my left foot became swollen, with redness on one side. This was over the weekend of the blizzard. I went in the following Monday to have my foot looked at. I saw the foot doctor, and it boiled down to some cellulitis, with no obvious entry point or reason as to why it occurred. He was going to put me on another antibiotic, but wanted to run some labs for white blood cells/etc first. I requested they add creatinine to check kidney function, as I always do anytime I get sick or have an issue come up. Well, good thing I asked…
My creatinine came back at 3.38, and on February 4th, I was 1.6. So something was clearly up. They held back on the antibiotic as we had to consult with UW Health in Madison first. UW comes back and wants me admitted, TODAY. So I go home, pack up, and head to Madison. I am still here today, 3/1/19. So far this is what has occurred:
I was immediately placed on IV antibiotics, and then I have gone through several rounds of IV prednisone, along with the IV immunosuppressant Thymo. Unfortunately the infusions of especially the Thymo come with great risks on things like lymphoma, other cancers, and issues. Tuesday, February 26th they did another biopsy to confirm rejection, which it was. It is considered mid-level, but still severe, but should be manageable. My creatinine today March 1st is down to 2.11, after going down to 3.35, 3.00, and 2.69, and the hope is tomorrow, it should be fairly close to where we need to be, or hopefully better if I’m lucky. I will no longer be able to do the Belatacept infusion in place of the tacrolimus pills, as Belatacept just is not going to cut it unfortunately. I think there is a good handle on it now that we know a little more on how my body processes the different medications. Everyone is different, of course.
I have seen some familiar faces, and some even remembered me from last August 2018 during my transplant stay. They have all be great, but very busy around here! As of this message, my tentative release should be Saturday or Sunday the 2nd or 3rd of March. I will post an update to this post once I have been sent home. I miss my family greatly and I know they miss me, as it is hard for them to be down here with three kids, including an almost 4 month old. They did come down Wednesday for a bit, which was a huge BLESSING, and my Aunt Lucy who lives in Madison has stopped in basically every day to hang out for a bit as well.
Feel free to check me out on Facebook, or click the link above for the Chris Needs a Kidney group page, some of my posts there are a little more humorous, because what else can get you through something like this besides some good old HUMOR! 🙂
Met with team this morning. Creatinine down to 2.03, they seem happy with it. Another dose of the IV immunosuppressant Thymo today (takes about 4hrs), but then I will be going home after doing all the discharge paperwork and meeting with everyone again.
I will have to take an extra antibiotic (Keflex) for a week to ensure the cellulitis in the foot stays away (still no idea of the cause but part of the many risks of being immunosuppressed I guess), I will have to return to labs twice a week, come back for follow up in a couple weeks, and then be going to the slow release/all day tacrolimus to help with consistent levels and side effects (hopefully). I think that’s it for now. So good news, and hopefully I won’t be back in this situation for quite a long time again! The highest risk of rejection is normally within the first six months of transplant, and I was just within that window.
I truly appreciate everyone keeping me and my family in your thoughts and prayers and the positive energies, it really does help. And thank you to all of those that have and are helping my family and me get through this, you are all very special. ❤️
Had my follow up today at UW after the hospital stint. Creatinine down to 1.53 and everything else looking good!
I had a follow-up biopsy on May 15th, the initial results showed the rejection had cleared completely, but today I found that was not completely the case. There is still some rejection present, so I will have to go through an increased dosage of steroids, including an infusion for part of it, to hopefully kick the rest of the rejection. I then have another (4th) biopsy and follow-up scheduled for August 22nd, should everything go fine between now and then. I am told this is not uncommon, and so far it seems we are ahead of the issue.
Final biopsy was performed on August 22nd and it looked good! No further action needs to be taken and I am finally now on once a month labs, vs every week or two weeks. I was told the rejection can occur, and often does, multiple times for some people. Hopefully I do not have that issue again, being a year out now! I was also lowered back to 5mg Prednisone, which is great. Unfortunately it is unlikely I’ll ever come completely off of it due to the IgA Nephropathy history (cause of my kidney failure). Otherwise, all is going fairly well. I have gained a decent amount of weight since the increases in Prednisone, and hope to shed that back off now.