My new kidney

[JR from Ontario]

Hi everyone.

Received a new kidney from my wonderful father last Thursday and today, I'm out of the hospital. Everything seems to be doing great, my Creatinine leave is between 95-110, so the docs are happy about that. Having a hard time keeping my potassium level higher than 3.3 (they'd like it around 3.9-4.0), and my phosphorus level is low too.

Anyway, I have a concern which I'm sure will clear, but here it goes, hopefully others can shed some light.

I'm a small guy, 5'3", 110lbs pre-transplant. Post-transplant i'm now 125lbs and growing a bit everyday. I understand this is due to the fluids they pump into you post-transplant. However, my concern is that my Nephro team wants me to drink 4-5L of fluids daily.

I'm not sure for others, but 5L of fluids, that's a lot of liquid! Is this normal post-transplant? Will this continue forever, or will that number dwindle down as my new kidney "settles" in?

I'm retaining water in my abdomen and my thighs/lower legs/feet. I know I shouldn't be too concerned at this point, but i'm hoping everything goes away.

Speaking of "settling" in, does this process take a long time? My scare rarely hurts now, and my only discomfort is this extra weight i'm gaining. Usually 1-2lbs a day now.

Other than that, I'm doing great, feeling like I've got so much more energy. I was lucky that I was not on dialysis prior to transplant (it was pre-emptive), but my kidney had dwindled down to 10% function by the end, my creatinine was between 475-600. Now I feel like a new person, with a bit extra weight thrown in

JR

[R30]

Hi JR

I had my kidney transplant on 25 October - so nearly three weeks ago. As for the fluid, I too, had problems with this. I was told to drink around 4L a day, but couldn't manage it; however, everything I did drink was settling on my abdomen and legs. It got to the point where I had put on 10kg in weight in just three days (around 22 pounds!) When I left hospital it was uncomfortable to walk, sleep and pretty much do anything. I asked my Consultant if he would consider putting me on Frusemide (Frusid, Lasix) to correct the problem; I was put on 40mg a day, and within a week, the entire 10kg has come off. Consider having a word with your Consultant regarding the same thing.
I'm not sure how long the "settling" in takes, but I know for me that now the fluid has come off, I feel so much better.
Hope this helps.
Ruth

[Carolyn in CA]

Richard got his kidney on 10/31 and he was up almost 30 pounds yesterday. They've started him on 2 types of diuretics and cut his fluid intake to 2 liters til the weight comes off.

He's swollen everywhere below the waist, including his private parts, but the doctors tell him that's gravity working.

Anyway, please know that you are NOT alone! They tell him everything should be better in about 10 days.

Carolyn

[Elaine]

sounds like a familiar problem with a few of u who have just had transplantes. Hope things will settle down soon, I understand initially Drs like to keep kidney flushed with drinking approx 4 litres daily WOW after fluid restrictions must be sooo hard to do!!!!


Anyhow CONGRATULATIONS 2 u all who have been lucky enough to have been trasnsplanted we hoping and praying that call will come soon maybe for our 17 yr old daughter.

best wishes & good luck Elaine UK

[Hal]

Great news JR, good luck with all the fluid problems

Hal.

[nycpetit]

I too bloated!! They just wouldn't stop shoveling the fluids in.
Nevertheless, I too asked for diuretics, well, rather, I begged. It was just too much pressure on my little body to carry around that extra 8 kilos. And I actually had some nerve damage in my feet from it.

Nevertheless, once it came down, I felt like a million bucks. Three months out, and doing well.

Hope you are too!!
Natalie

[JR from Ontario]

Wow.

What can happen in a few days.

When I posted that message, I was on a day pass from the hospital , came home , checked my e-mail and decided to post here.

A few days after posting, I lost all my fluids. Doctors said that my kidney was starting to really kick in. Took me two days to lose the 6-7kg's.

Right now I feel great (two weeks, 2 days post transplant), still a little sore at the incision point, feels like some stretching, but I hear this is quite normal. I unfortunately had to go home with a foley cath for 4 weeks until my stent comes out. This is a real pain, but oh well, I have to live with it.

Other than that, I'm doing great.

Unfortunately, my father, who donated the kidney wasn't doing so well. Two weeks after transplant, he was unable to keep any food down, they actually discharged him 3 days post surgery (it was done laproscopically), and afterwards, he had some issues with pain, and now with vomitting continuously. He's lost about 15 pounds. They admitted him into the hospital a few days ago and pumped his stomach, leaving a tube in there for a few days. I'm glad to report that he's doing well and managed to hold down some beef broth and apple juice/jello today.

It's been a real roller-coaster ride .. I feel great, but also feed horrible that my father is going through much more than I have.

So far I've haven't been going out a lot. I'm not sure what the restrictions are on me (i'll have to ask next time I go to clinic), but I'm assuming i'm not under any quarantine and can do my groceries and continue to live a normal life. I'm aware of the risks of infection (in fact, I have a UTI only a few days after transplant, which had the doctors concerned)..

I'm not sure how everyone does it in other parts of the world, but here in Ontario, we measure the creatinine level through a number. Most "normal" (no kidney disease) have a level of 50-80. Mine prior to transplant hovered between 475-550. Right now, it's been fluctuating between 95-135. Past few bloodworks, it's been 120-135. Might be settling around this point, I just hope it doesn't climb anymore. I'm just wondering what other people's levels are? If you can manage to decipher the way we do things here in Ontario.

-- JR

[Elaine]

Hello just read u post nice to hear that u doin ok post transplant etc. Yeh, even with lap removal of donated kidney can still be more difficuilt than the recipient etc. Hope u father improving etc just 1 of those things - u just never know, heard of others who have 'sailed' through donating their kidney to their loved one etc.

Glad the fluid is settling for you, supose initially post- transplant otta ups n downs trying to juggle meds etc and find wot suitable for yourelf etc.

As far as 'quarantine' as such its sort of taking xtra care when outin small confined public places where lots bugs lurking etc like cinemas, pubs , clubs, public transport somrtimes too although depends, as some people dont have much option about travelling etc. Even sitting in clinics at times comes with risks when lota sick people sitting around in enclosed areas etc. Most of it is 'fairly' common sense from wot I have read been informed etc.

Good luck 2 u and hope that u & u father feeling better real soon.

Elaine uk

[R30]

Hi JR
Just read your second posting. Glad the fluid has now sorted itself out - it's not pleasant from my experience.
Regarding your comments on creatinine, we, too, measure this in numbers here in the UK. Mine was around 900 before the operation and has now sunk to 103 (normal here is between 70-120). Yours may well come down some more now that your kidney has started to work well. There is another patient who had his kidney four days before mine, and the last I heard, his was 183 but still coming down slowly. I believe it can take some time before it's back to a "normal" level.
Hang in there, and take care.
Ruth

[JMan]

Hi JR


Sounds like things are going pretty good with you..

Congrats..

On creatinine, yeah there are 2 units of measurement that you'll come across online the common one and the USA;)

Most countries use the µmol/l whereas the US uses mg/dl (for whatever reason.) there is a convertor here:

http://members.iinet.net.au/~bill/java/creatinine.html

Among other places..

Hope this helps.. I'd write more I've got a UTI right now and feel a bit rotton.

J

[Art from Ontario]

JR from Ontario

"So far I've haven't been going out a lot. I'm not sure what the restrictions are on me "

Above all... DO NOT LIFT anything heavier than a 1/2 gal. of milk
for 6 months....all other things can be fixed

.....do not skip any meds....

.......use common sense.... not muscle....and good fortune will follow.

[JR from Ontario]

Really?

Half-gallon? That's not a lot, what, 1-3kg's? I heard about not lifting more than 10lbs or so. Doctor's didn't really give me any guidelines in the hospital, I'll have to ask them during my next clinic visit.

GOod thing today, I was dropped from 5mg twice a day for my Tacro to 3mg. So that's coming down. I used to be on 6mg twice a day.

As for meds, not really a problem, my PDA keeps me up to date and beeps like a madman when i'm to take my meds, so i'm on the ball.

Basically I was concerned with going to the grocery store, going to walmart to buy some supplies, going to the store, etc. I'm aware that I'm to stay away from malls for long periods (1-2 hours, I should stay no more than 60 minutes) and theatres (that's ok, I don't go to theatres all that often). Basically enclosed areas where I'll be breathing re-circulated air for long periods of time.

Other than that, I just wanted to make sure I can live a relatively normal life (other than the lifting part).