What to expect after transplant?

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What to expect after transplant?

Postby nycpetit » Thu Aug 05, 2004 7:16 pm

Can anyone tell me what to expect? Don't leave out the bad, just sell it straight! This time next week, I'll be waking up!!

I know every unit is different, but I am just curious to know what your experience was. I was told you are very swollen when you wake up from the surgery itself and all of the fluids they give you to get the "bean" working. How bad is that?

I am supposed to be there for five days barring any problems. I wish i could still access the old board, but I can't seem to anymore. Then I wouldn't have to bother you all with the same question that's been asked a million times.

What were you able to do when you got out of the hospital? Could you walk okay? Shower, get up a flight of stairs, get up and down from a chair? Was your abdomen swollen? If so, for how long? Could you "see" the kidney?

Whatever you can think of, just tell me!

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Congrats.... on your gift...

Postby Bruno » Thu Aug 05, 2004 7:52 pm

:D First of all i Hope you will have a speedy recovery...
as memory serves me correctly.... :wink:
You will be given a ton of pills thru out the day and evening...
You will wake up in the icu and then move to a private room after 24 hours. You will be very sore so ask for the pain meds in addition to all of the rest of the meds. You may or may not find an extra line or two that they inserted during surgery. You will have a folic cather (which will stay in for 2-3 days). Blood will be taken 2-3 times a day (get use to it because you will need blood drawn every week for about 6 mons.) you will be encourage to walk and drink plenty (this will help you to recover quicker) as times goes by after your discharge you will make clinic visits bi-weekly then depending on your progress your meds and clinic visits will decrease. Your donor will feel worse than you and recover slower. You both are restricted in activity i.e. driving, lifting, etc. for about 2 months. my donor was released in 3 days and i was released in 5 days. :!: last but not lease....drum roll please... NO RENAL DIET RESTRICTIONS ...unless otherwise instructed. that's all i can remember but if you have specific questions do ask....
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Postby JMan » Thu Aug 05, 2004 10:55 pm

PM'd ya Nat:D

"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Postby Anne in Va » Thu Aug 05, 2004 11:13 pm

Hi Natalie,

I will be sending prayers and good thoughts your way for a successful surgery and speedy recovery.

Here is my story. I arrived on the ward the afternoon before surgery. Did a lot of admin stuff. I was sent for a final chest Xray and EKG. An IV was started and blood was taken and usual vitals and weight. I was weighed daily while in hospital. I was given elastic stockings to wear and was told that anytime I was in bed, to strap on the leg massagers. The rest of the evening was spent socializing with my donor and our families.

On the morning of surgery, my donor was taken down first and I was to follow about two hours later. Once in Pre Op there was more admin stuff ,visits from surgeons, surgical nurses and various doctors involved. Once asleep, More lines were added plus a neck line. It was a nuisance as it had, I think, four or five ports which dangled. I was also shaved but only a half, to an inch below the incision.

Normally patients are returned to their room from ICU sometime during the evening of surgery.

I had a morphine pump for the first two days then was switched to Percocet. I think I was allowed up to two pills every 4 to 6 hours. I just had to call and the nurse would give me a pill. I remember taking one pill approx every four hours for the next day then the interval between gradually lengthened. You may need more or less. Each day I was assigned one particular nurse who was responsible for my care.

I had pills morning and night. Plus I received the Prograf and Cellcept at 10 am and 10 pm. I also had IV thymoglobulin and steroids. The steroids were quickly reduced in dose, switched to pills and off them in ten days. I had to measure everything I drank. I also had a foley catheter for three days. Was dreading it but found it to be no problem. After it was removed [a cinch] I had to collect my urine for measurement. A lot of blood was taken but since it is taken from one of the lines it's not a problem.

I had to get up the day after surgery. I told the nurse I wanted to do it myself. Made sure I had drugs on board! I raised the head of the bed and in my own time moved my legs around. It was a little uncomfortable to get up and down from chairs/bed and walking was a little slow but every day you will be able to do more.

I did receive a lot of fluids by IV at first but my my new kidney was able to keep up quite well. The large dose IV steroids did cause some swelling which I noticed in my face the first couple of days but that soon disappeared. The swelling may depend on how sleepy your new kidney is at first.

I believe the dressing was removed on the third or fourth [?] day. I had internal stitches and tape closing my wound instead of staples so that was more comfortable. Now, at eight months out my incision can barely be seen. I was able to shower in the hospital. A little tentatively but it felt great. My abdomen was not swollen. I had done CAPD so I felt quite skinny!

I was able to do all the things you listed, some a little slowly. I found that I had to adjust my sleeping position for the first couple of weeks. I needed an extra pillow and was more comfortable with something under my knees. I used one of those little roll pillows. At first I thought I was aware of the kidney but I'm not sure what was kidney and what was incision! Now I am only aware of it when I lie in bed. I like to reach down and give it a pat and tell "Kathie Kidney" what a great job she is doing!

Hospial visits were twice a week, once weekly, every two weeks, once monthly and now every two months. I had an extra visit or two at first. My magnesium was low and I had to get IV magnesium. Several doctors told me to expect it to take up to six months before feeling really well. Somewhere between four and five months everything came together and now I feel normal again.

My donor had laproscopic surgery and recovered very quickly. She is a very active person and always on the go so she was soon up and going.

This was my experience as well as I can remember. Any more questions just ask.
Anne in Va
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Postby Rachel in NY » Fri Aug 06, 2004 2:59 pm

Hi Natalie!

I was so happy to hear your good news.. that you were back with a tx date! Woo hoo!

What to expect? Well.. I'll give you my experience. I was feeling VERY unwell before the tx. I had not been dialyzed for a bit bc my access had failed, and there was no new one they can give me. So I was off dialysis, filling up with water, coughing (from water collecting in/around my lungs), etc. I had a severe headache, seeing blurry, pains in my legs, etc. In short, I was in the hospital, bedridden, and waiting for a miracle. I was on morphine, and that was keeping me semi knocked out - and that was the best I was able to be at in that time. I was a bit dellusional as well, and every time a phone rang or something beeped - in my semi-consious, i'd think it was the tx call. But it wasnt :(

Well... I remember a very rough weekend, I was so drugged, I slept through most of it.. and then came saturday night. LATE saturday night. And a kidney was available. wow. It was all a blur. I just remember feeling awful.

At 5 in the morning (sunday morning) I had the tx. From what I was told afterwords - the new kidney started working immediately, and I peed on the surgeon! Even before I was "closed up". When that happened, All the surgeons and people in the operating room apparently jumped up and cheered. :) I was taken to recovery.. and I was still asleep though. It took me 9 hours to wake up post tx. But I tend to do that. Anyway.. my family had seen me during that time. And they said my cheecks were rosy, and I had more color then I've had in my face all year. Not a feverish flush, and not a sickly flush - a healthy rosiness/glow. :oops:

I still merily slept away the hours.. until I woke up. I grappled with my air tube or something, they realized I was awake, & it was removed. I asked "did the call come yet?" and the lady said "Rachel.. you HAD your transplant..." and I smiled and apparently went right back to sleep.

For a few days I was in and out of sleep. I was getting alot of pain medications. I really didn't do anything. I would wake up feeling this very happy feeling, & sip some lemonade/coke/ water & ice, and plop right off to sleep again. It was a happy time.

In response to your question about the swelling, no, I wasn't swollen. It may be bc I was so swollen BEFORE surgery.. that even post surgery swollen was better then that. I don't know. But I do not recall being swollen at all. I was pumped with fluids and had a zillion lines and catheters all over the place - I was practically tangled! hehehe. but as per family members and stuff - I was looking better then I have looked all year.

A few days later, they made me get out of bed. I walked a little. I had a pain pump thingie where I can press a button and it gives me a mini-burst of pain relief stuff. So walking WAS painful but i learnt that If I press it a few minutes before i needed to walk, it was much better.

Anyway, I got used to everything i guess. And it all started feeling better in its own time. I really dont' remember when the staples and dressings were removed. THe staples felt like sharks teeth biting me. heheheh. but it was okay.

The thing you have to remember - is that you'll have a kidney! Its such relief. Its such a good feeling. Its so "bright and happy" all of it.

I compared it to this-

Say you have a very important meeting or soemthing - and you have to be in uh, california, by tomorrow - for the meeting. So you're goign crazy a few weeks before, preparing for it. then its the day of the flight, and your car brakes down, you can't go to the airport. you call a cab. it gets to you late. you finally get to the airport, long lines at security. at that point you've had it, but you still go on. you get to the proper gate, with seconds to go. the flight is delayed. :( well.. you call the folks in california, but they really coudnt care. "be there or else". your job is on the line. you are going crazy from worry. then the plane arrives. you get in it. they don't take off right away bc of air traffic. you are biting your nails. wait - you don't have any more nails. you already bit 'em. finally, finally, that plane takes off into the skies. Wow. you settle back in your seat, take off your crazy heels, and relax. you're on the way. true, you have a long flight to go. true, you might encounter turbulence. but, you feel safe and relieved, bc you are on the way. y'know? does that make sense to you?

I compared the kidney disease/dialysis to the pre-plane stuff. the surgery is the "taking off into the skies" bit. When you wake up after surgery, its like "you're in the air". lay back and relax. it'll all be alright. you know?

k, as far as feeling the kidney, some people DO feel it afterwords, they have a lump. I was very skinny, & don't have fat in the area, so i DO feel a little bulge. it doesn't like "pop out" of me, but when i run my hand over it, i definately detect a bulge. most people can't feel it or see it though. i guess it also depends on how deep inside they put it.

Lastly, as far as doing stuff around the house, stairs..etc. i did it all, but it does take time. different for everyone. i didn't get out of the hopsital till a month after my tx. i didn't do stairs there. but i did walkin, and i had a walker as well. by the time i came home, a MONTH later, i was obviously feeling lots better and was able to do quite a bit. i slept with pillow rolls for a long long time though. i'd get on my side in a comfortable position, and stay there. If yo're planning on coming home after 5 days.. you're not going to be able to do EVERYTHING on day 5, but you'll be able to walk around slowly i expect. Will you have anyone at home to help you out with things? fetch stuff, etc? you will be able to get out of bed by yourself.. if you have something next to the bed to pull yourself up on. the sitting up and goign out of bed won't work. but you can roll out or have a chair next to your bed. you crab the chair, to pull yourself out. i do that with all surgeries.

you'll be able to drink as much as you want :) that's a treat. make sure you have lots of goodies in the house. and try to get someone to be at home with you. someone to help you with things. you may not be so up and about and you'll just want to sleep alot. so it helps having someone there to prepare your meals, get you things when you need 'em, etc. i don't think u'll be able to go up stairs in a regular basis... 5 days post op. however, if you live on like a 2nd floor - you'll be able to make it up that one time. but if you plan on going up and down all day, don't quite think so.

well, i sure have ranted here. i wish you lots of luck, and only the best. if you have any more specific questions, please do let me know. i'll try my best to answer 'em, and i promise - they'll be short answers, not like this ;)

~ Rachel
Rachel in NY
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