If you had read my last blog post, you saw that I had explained the process of getting the call for a cadaver kidney transplant and I explained the surgery process and all that. Well, it seems like the weeks following were much more difficult than the actual surgery process! I am going to explain everything that I was and still am, going through. It has been an extremely difficult time for me and my family.
I received my kidney transplant October 12th. Initially it was a crazy hospital stay. My kidney was beyond sleepy, and it took awhile before I even started producing urine on my own. It was an extremely slow start. Once I was home, and able to heal and rest more comfortably, my urine output started to increase, but still, not as much as it should be. So, I was still doing dialysis. The interventional radiologists had to put in a chest catheter because during my transplant surgery, my dialysis AV Graft in my arm clotted because of my anaphylactic episode during surgery. The catheter is where most of my problems start.
One morning when I woke up, I noticed that my face was extremely swollen. It almost looked like I had the mumps! I had an appointment set up with my transplant team the next day, so we didn't worry about it until I was in the see the doctor. Well, the next thing I know, is I'm being admitted because they originally thought the veins in my chest and neck were narrowing due to how many chest catheters I had had since I was put on dialysis in 2008. They had me see the Interventional Radiologists again so they could get inside my chest and my neck to open up whatever needed to be open. Well, it was quite the surprise when they told me it wasn't my veins. It was a nice big blood clot sitting in my chest, not allowing the blood flow or the fluid to drain from my face. They immediately took out my chest catheter and inserted a Femoral Catheter. I was then put on a 24 hour heparin drip for about a week, and was "bridged" over to Coumadin, which I will probably be on for years to come. This was the first "uh oh" in my transplant experience, which caused a lovely mental breakdown that caused me to be medicated. It was just so much in such a short amount of time, that I just completely broke down. Not only in front of my mom, but in front of my transplant surgeon as well. He is the one that had me medicated and apparently he got very upset as well seeing me like that. When my nurse came in to give me anti-anxiety medicine, she said she had never seen him so upset, that he had tears in his eyes. Before he left my hospital room he said "You're allowed to break down. You have gone through so much in such a short amount of time. You cry today, and tomorrow you go back to being the toughy you are!" I have to say, I absolutely love my team at the transplant center. So that was my first issue after transplant.
Next issue we had to deal with, was trying like hell to get my kidney to wake up. My transplant surgeon set me up for 7 plasmapheresis procedures which is to help people like me to lower antibodies in my blood that could potentially hurt my kidney. *Plasmapheresis is a process in which the plasma in the blood is separated from the cells. The plasma that is removed from the blood contains those dangerous antibodies and the plasma is replaced with a medicine called Albumin*
Immediately after finishing plasmapheresis, I went for an infusion of another medicine called IVIG. Which is basically plasma taken from hundred of donors and has "good antibodies" to help fight diseases and lower the bad antibodies. I have 2 more IVIG infusions, and a Rituximab infusion left to go.
My kidney finally decided to join the world a few days ago. It started with insane urine output, and finally my last blood test showed my creatinine dropped to 3. *Creatinine is a chemical waste product in the blood that passes through the kidneys to be filtered and eliminated in urine. Creatinine basically shows how much kidney function a person has. The lower the creatinine, the higher the kidney function. Normal creatinine is 0.40-1.10 (in a normal healthy person, with working kidneys) Mine however, has finally just dropped to 3.0. Which for a transplant, is pretty decent.* We are hoping to get my creatinine down to at least a 2, and of course we wouldn't mind if it was even lower. It has taken my kidney a very long time to wake up, today is officially 7 weeks post transplant, and I'm still not quite all there.
I am back on 10mg Prednisone, and I can't stand watching my body change because of this drug. My face has already gone to the "moon face". The only side effect I don't have yet, is the crazy appetite and man, I hope that stays away. The medications have also effected me horribly and we've had to do some mix ups pertaining to my medicine. The one anti-rejection med I am on, is called Prograf. I have been on this medication before I started dialysis. Back then, it gave me horrible tremors. It almost looked like I had Parkinsons by the way I would shake. I noticed that those same side effects are coming back. Its hard for me to hold anything because of the constant shaking. Not to mention Prednisone makes you feel "jittery" so I'm just a big bundle of jitters and shakes. The other anti-rejection medicine I am on, is called CellCept. The first two weeks on this medicine, gave me horrible tummy troubles. From heartburn, to nausea, to diarrhea. We ended up having to cut that medicine way down, but it seems like its working just fine since my kidney is indeed waking up.
So many people thing that once you get a kidney transplant you're "healed". That is absolutely NOT the case. Kidney transplants and dialysis are both just treatments. There are no cures for kidney disease or End Stage Renal Disease. Getting a kidney transplant is a lot of work. A lot of "don't do this" or "You're not allowed to go here" and of course, "Watch your body for anything that doesn't feel normal" I was first seeing my transplant surgeon twice a week, and now I'm at once a week and blood work is twice a week. We are making sure we're monitoring my kidney function very closely, because as my transplant surgeon put it "You're a very difficult and strange patient". I beat to my own drum so to say.
Every morning I wake up with my face swollen. I have massive chipmunk cheeks and sometimes it feels like my eye balls have too much pressure on them. Eventually after an hour or so, the fluid drains away from my face. Being on my feet for too long causes fluid build up in my ankles and lower legs. It doesn't hurt really, and its definitely not as horrible as it used to be when I was younger, but it is a little uncomfortable. I have a long way to go before I'm back to my "new normal" and I'm hoping this kidney works for well over 10-20 years. I'll take what I can get! Now that I am finally off dialysis, (I still never saw that one coming) I have a lot of free time! My goals are to finally get my license, get my GED, and become a Pediatric Phlebotomist. It's what I have always wanted to do. Before I do any of that, I want to get a part time job just to get myself used to working. I have never been able to work as I started dialysis when I was 16, and it effected my body in a horrible way for the first year of dialysis. I have goals, and I'll be damned if something keeps me from getting to them. My first goal was to be off dialysis before Thanksgiving, and I did it. So I know I can do the rest of my goals. I will be taking it slow, just because I don't want to make myself exhausted and put my new little bean at risk.
Thank you for reading this post. It was a long one. Always remember, kidney failure can effect anyone. It is a horrible disease, and there isn't half as much awareness out there. That is what I hope to do with my blog. I want to spread awareness and advocate for the thousands of people who suffer from kidney failure and dialysis.
