It's been a while!

[Restorer]

It's been a long while since I've logged onto IHD. Last Thursday, the 5th, at 10pm, I got The Call from UCLA.

It's a well-matched kidney, KDPI 19, from someone about my age. It came from out-of-state, and was already cold for 20 hours by the time I had a bed (any bed) after checking in. They had me do a short dialysis treatment as soon as possible that morning - I was on the dialysis floor waiting for them to finish setting up early in the morning. Once that was done, there were a few last checks and doctors to talk to, and they got me into the OR at 8:30am Friday. As they wheeled me in, the surgeon was working on the kidney on a side table - stitching things up (or unstitching?).

I woke up just as they wheeled me out the OR doors and to post-op, at 12:30. It took them 5 hours (or longer?) to get me an actual room.

Because of the long cold ischemic time, they expected the kidney to not start up immediately. To give it the best chance of situating and healing well, they had me on an initial protocol of thymoglobin infusions.

The whole time I was in the hospital, the kidney didn't produce any urine (well, maybe 30ml a day with the Foley in, but much of that could've been the last residual function of my native kidneys). Everything looked okay except for that, so I had dialysis 3 more times in the hospital, after the transplant, and they sent me home on Wednesday, the 6th day (depending on how you count) once I was eating well enough, walking, and having bowel movements.

My kidney started making significant urine over the next two days. After my first clinic appointment on Friday morning, I had to do regular outpatient dialysis that afternoon. After that (and with some Lasix), it really kicked into gear over the weekend. I peed almost 3 liters yesterday! Can't say I'm thrilled about my current bladder capacity and muscle tone (up every 30 minutes, wheee!), but I was cleared to skip outpatient dialysis on Monday!

Have to be up early again tomorrow for labs and clinic. At least the hospital cafeteria (the parts I can safely eat) is something to look forward to, at least until I get sick of it.

[Simon Dog]

KDPI 19

You hit the F'in jackpot!!!

Congrats.

[PrimeTimer]

Congratulations and Best Wishes to you! You must be on Cloud Nine to know you've got a new kidney! It is always a good day to hear about someone's success. Hope your success story continues and that you can keep us updated. Such wonderful news to spread....

[Simon Dog]

Holy crap batman!!! I just noticed you're a fellow web nerd.     

[Paul]

Congratulations. Wishing you good luck with the future.

[SooMK]

Yay! Congrats! Hope it all goes smoothly.

[MooseMom]

It is so great to "see" your face again, especially when it is accompanied by such good news.

I wish you many years with your new kidney!

[Jean]

So very happy to see you again. News about a new kidney is awesome. I wish you many more years of it working fine. This place has not been the same with out you. Welcome back, I have very much missed your cooking comments too. Blessings to you and loads of good wishes.

[iolaire]

Congratulations @Restorer! That must have been scary waiting to pee.  I wish you the best.

I also received a kidney that was on ice for a long time but I was still urinating so if the kidney was not producing we could not see it.  I did experience high creatinine from the transplant on July 13th and it didn't get down to the current level of 1.4 until August 29, 2017.  (But the new kidney did do enough that I didn't need to do dialysis after the transplant...)

[Michelle2016]

Thank you very much to share your amazing experiences with us. I wish your kidney last many many years.

[kristina]

Hello Restorer, I send you my good luck wishes and all the best from Kristina.

[kickingandscreaming]

May you and your new kidney have many healthy years together.

[cassandra]

Fantastic news Restorer!!


Good luck and have an extra drink on me. 


Lots of luck, love and strength, Cas

[Charlie B53]

I know how much my bladder has shrunken. Far too many times I didn't know there was anything there until I stood up, then............ It was a race to the bathroom.

No doubt you are doing this now.

Isn't it a surprise?

Wonderful news!

[LorinnPKD]

I love hearing good news.  Couldn't be happier to hear a fellow IHD'er has gotten a healthy kidney.  Hope all is going well for you!

[Restorer]

I know how much my bladder has shrunken. Far too many times I didn't know there was anything there until I stood up, then............ It was a race to the bathroom.

No doubt you are doing this now.

Isn't it a surprise?

Wonderful news!

Oh, absolutely. It's a bit better now that I've gotten rid of all the extra fluid I gained in the hospital, and the JP drain is out (letting things shift to a slightly nicer position), and when I'm not actively on Lasix. But still - get up to get myself a drink, take a pee break between filling my glass with ice and adding the water. 200 ml at best per bladder-full right now. 

KDPI 19

You hit the F'in jackpot!!!

Congrats.

UCLA tries really hard to match good-scoring patients with good-scoring kidneys from a similar demographic for the best long-term results. By the time the on-call coordinator called me about this kidney, they had already done the crossmatch and accepted the kidney, and I was the only person they called for it. They seem to have had me and me alone in mind when they were offered this kidney. 

Congratulations @Restorer! That must have been scary waiting to pee.  I wish you the best.

Not really scary... mostly because I don't tend to get scared about procedures or their outcomes, but especially because everything was happening as the doctors expected it to. They warned me well before the surgery, and multiple times, and over and over afterward, that the kidney would take a while to wake up, and it was perfectly normal. They *hoped* it would wake up within a couple of days, but they were perfectly happy to send me home as soon as I was recovered from the surgery, to wait out the kidney at home.

I also received a kidney that was on ice for a long time but I was still urinating so if the kidney was not producing we could not see it.  I did experience high creatinine from the transplant on July 13th and it didn't get down to the current level of 1.4 until August 29, 2017.  (But the new kidney did do enough that I didn't need to do dialysis after the transplant...)

I was urinating maybe 50ml every 3 or 4 days before the transplant, and it looked like I was collecting about 20-30ml a day in the Foley bag for the 2 or 3 days I had it in, so we didn't know exactly where it was coming from, aside from it being pretty well red-tinged.

My creatinine as of clinic this morning was 6.09, down from 7.09 on Monday morning, so I've been tentatively cleared to keep skipping dialysis as long as my numbers keep trending that direction. PTH is high, so I'm going back on Sensipar, probably indefinitely. (It would've surprised me if my PTH weren't high.)


I haven't decided on a full name for my kidney yet, but I've been calling it "Coop" (for anyone who's seen the new season of Twin Peaks...)

[okarol]

Congrats! I hope all your numbers are going in the right direction. Jenna has been back at UCLA every week or two since her transplant in July. After 9 months they are finally releasing her to her regular nephrologist. We still watch her numbers but hope someday not to worry so much. Do you know what your antibodies were before the transplant? Must have been a great match if they only called you!

[Restorer]

It's been less than a month, and my labs are all looking great - so much that they've already kicked me to once-a-week clinics. My creatinine on Monday was 1.34 and my bladder seems to be picking up the slack nicely, especially after having my stent out.

[Restorer]

Congrats! I hope all your numbers are going in the right direction. Jenna has been back at UCLA every week or two since her transplant in July. After 9 months they are finally releasing her to her regular nephrologist. We still watch her numbers but hope someday not to worry so much. Do you know what your antibodies were before the transplant? Must have been a great match if they only called you!

Oops, I missed your question! All of my PRA values were 0% before transplant. They didn't only call just me, they accepted the kidney, for me, from out-of-state, before they even got ahold of me!  It was already 17 or 18 hours cold by the time I got the call, though.

[cattlekid]

Kick  !! 

 

[okarol]

Congrats! I hope all your numbers are going in the right direction. Jenna has been back at UCLA every week or two since her transplant in July. After 9 months they are finally releasing her to her regular nephrologist. We still watch her numbers but hope someday not to worry so much. Do you know what your antibodies were before the transplant? Must have been a great match if they only called you!

Oops, I missed your question! All of my PRA values were 0% before transplant. They didn't only call just me, they accepted the kidney, for me, from out-of-state, before they even got ahold of me!  It was already 17 or 18 hours cold by the time I got the call, though.

That's great! I hope it lasts a long time!