Hello friends and family, I had a great week at home – my Mom was there most of the week, she was great. Thank you for running yourself ragged for me Mom 🙂
On Friday I went in for my normal bi-weekly labs, and they decided to go ahead and biopsy the new kidney that morning. My creatinine had stalled in the low 2’s again – it did go up a little bit (from 2.0 to 2.19). It was time to dig into it and see why it keeps stalling and going up and down, instead of getting down in the 1’s where it’s supposed to be. (As a point of reference, you can see this kidney isn’t failing.. it’s just showing signs of rejection. 2.0 isn’t a terrible reading, it’s just not normal. They want to fix it before it gets bad. With my old kidneys my creatine was way high.. like 6’s, 7’s, etc). Anyway, the biopsy was quick, easy and not much pain at all. Just a few jittery flinches from my nerves hahah.
We were at the transplant outpatient area all day Friday, they still didn’t have biopsy results at 6pm so they sent us home. I got a call around 2pm on Saturday, they wanted me back at the hospital to check in as inpatient that night. I checked in about 5pm Saturday.
The biopsy did find some rejection going on in the kidney, but apparently nothing they can’t handle here. They gave me a heavy steroid dose Saturday night, my labs on Sunday morning had my creatinine back down to 2.0. They weren’t finished yet though. After going through a few treatments to lower my potassium level (it was high today) they started a 12 hour drip of what they call Thymoglobulin, or “Thymo”, it’s a high powered immunosuppressant drug that sends my immune system in a frenzy. To combat side effects they gave me Tylenol, injected Benadryl, and a few other things to help.
At time if this writing (6:30pm Sunday), I don’t feel any ill effects, but I do have 8 hours to go. This Thymo drug will stop my immune system from rejecting the kidney, I may have to do a few treatments of this, I’m not sure – but I know it’s not permanent. They said once they get my immune system in order with this, my normal drugs I’d been taking at home (plus maybe another, I think) should keep it at that baseline.
I don’t know how long I’ll be here this time – probably until my numbers are really good and steady. They sent me home last week because my creatinine was trending downward and they could monitor me at my biweekly clinic visits.
Anyway I’ll be interested to see my new creatinine level in the morning. They draw blood for labs at 4 or 5 am, I get results around 7. I’ll add to this blog post as I get updates in coming days.
So in the meantime I’ve been laying in bed soaking up March Madness. How about all these upsets huh?
Well my new creatinine number came in, and for the first time ever I’m below 2! It’s now at 1.95. My ideal number is around 1.5.
My doctor is very pleased with the treatment results, and wants to repeat them for another day or two. He said my body is responding well to it, and my number should be down to 1.5 in a day or two, when he’ll let me go home. I’ll then continue treatments on an outpatient basis while they wean me off the steroids / Thymo that I mentioned in the original post above.
Once I’m down to the 1.5 creatinine number, my normal daily immuno drugs will keep me there.
This is great news – it appears that my new kidney is going to be A-OK. We have to see it there first but the doc is very confident it’ll happen.
Looks like they are sending me home later today 🙂 my creatinine didn’t drop much (1.95 to 1.93) but it did drop. I’m doing another Thymo treatment this morning.
I’ll have to come in here pretty much every day for at least the next week for daily treatments of it. (4 hour drips). I live very close to hospital so it’s not a big deal for me. He said since I was late to the game on these treatments it may take awhile to get me down to 1.5. Also, no sign of FSGS in new kidney, so that’s not spreading from the old ones.
All in all I’m happy, feeling great, things are heading in the right direction. It’ll be nice to be at home at night again.