Question for nycpetit

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R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Question for nycpetit

Post by R30 »

Hi
I am due to have my transplant here in the UK a month on Saturday and just wondered if you could give me some advice on what you felt like when you came round from the op. What sort of tubes did you have and were they uncomfortable? Was it uncomfortable having them removed? Is it easy walking around with a urinary catheter?
Sorry to bombard you with questions. I have read a lot of literature on having a transplant but it is always vague regarding the post-op period and I need to know, specifically, how other people have found it and what to expect.
I remember you saying in one of your previous posts that you were filled with a considerable amount of fluid to kick-start your kidney. How did that feel when you came round from the anaesthesia, or did you not notice it until you started to get out of bed?
Thank you for any help you can give me.
Ruth
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Hi

Post by nycpetit »

I am on my way to work right now. I will write you a detailed and explicit description of all to expect as soon as I can. K? :) Probably within the next day.

Natalie
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Ruth,

Take a look at:
http://www.google.com/url?sa=U&start=2& ... .pdf&e=747

as its pretty good for the post op stuff. Though its USA based most of it is comparative to the UK..

I also have a UK 'guide' done by guy's & thoms which I got when I went to one of their pre-transplant groups/workshops (every unit should have these it was brilliant!! All those Q's answered and every member of the team avaialble to ask Q's) PM me if you want a copy and I'll post you one..:)

I kinda 'gatecrashed' that group cos I'm not a guy's patient (tho used to be but not in the adult dept) so I called and said.. 'they don't do em at mine, can I come along' They were a bit reticent, but sorta agreed on the provisio I understood that protocols might differ etc..

The main reason it was superb though was the freaky timing.. I went to the group on the Thurs and had my call for transplant on the Sunday!!

Bizarre!

Hope this helps
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Oy vey

Post by nycpetit »

I literally wrote a tome for you. At least an hour it took. And poof it disappeared. I am late for work and will have to write later. I am so sorry

natalie
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Post by R30 »

Hi Natalie
I'm so sorry you lost what you had written. Just whenever you have a moment, it would be very much appreciated, but no rush (I have a month!)
Take care
Ruth
Michele in TN
Posts: 53
Joined: Sun Sep 12, 2004 8:21 am
Location: Nashville, TN, USA

Post by Michele in TN »

I woke up with very little pain post op. I did have a morphine pump though. I sat up straight away and the nurse thought I was going to puke but I just wanted to sit up and see my family.
I was up walking around by the mid of day two and quite honestly my staples (incision from the transplant itself) never hurt. Now the IV line in my neck and the drain were pretty uncomfortable but managed easily with meds. The catheter was a little uncomfortable but not until it had been in a few days.
I wish you the best. Two months ago today is when I got my call. I've had some up and downs but all in all it's going great. I freaked out right before they took me back worried about the meds and side effects and well you know how the mind races. But the Nurse Anethisist was making me laugh by the time I was rolled into the OR and I even got a peak at the kidney.
Michele, 30
Mom to Emily, 11
Wife to Chris
Transplanted 07/29/04
Creatinine 0.9 2/07
stopping prednisone due to severe renal osteodystrophy 11/06
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Question for Natalie

Post by R30 »

Hi Natalie
Just wondered how you were getting on. Hadn't heard from you for a while and was wondering if you are ok?
Let me know - I'm keen to know what I'm in for too!
Take care
Ruth
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Hi Natalie..

I need to say hi too as I'm going to be in NYC some time in the 3 week period after the 25th of this month. :D

PM me when you have a mo. Or I'll try and shoot off an email soon:D

Cheers
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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http://www.flickr.com/cybercast
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

I am alive!! :)

Post by nycpetit »

Hi there. No excuse for not being on for so long. I, as I posted before, had written this huge tome, only to have it erased, and it just peeved me. Then I became insanely busy, as you'll see to be the case for you as well post-op. Working, at school, and even back at the gym (okayed by the doc). So here's the scoop.

I went in a day early because my potassium was too high. Was not yet o dialysis, so I had to have a groin catheter, quite unpleasant. However it was a fast dialysis, only two and a half hours, and then over. Originally I was to have arrived at the hospital at six am with my donor and gone down to surgery at eight am. Everything went like that for us, except, as i said, I was there the day before. My donor (my stepdad) came in to see me with my Mom at five-thirty am. My donor had to "clear his system" with some nasty stuff to drink, but I didn't have to. Some surgeons require it and some don't. But he played golf the day before surgery, and I got my haircut, had lunch with my Mom, before being rudely interrupted to go to the hospital early due to the high potassium. :lol:

In any case, I was started on some IV fluids and they were waiting for my thymoglobin to come up from the pharmacy (i am on steroid-free protocal, so you get this thymo five days in the hospital taken with benadryl and Tylenol to combat the side effects of the thymo) and my stepdad WALKED into the operating room and lied down on the table. He was not given an IV or anything prior to going into the operating room. He was given the Foley, and IV's after he was asleep. His surgery was laproscopic.

I was taken down about eight am. They were running a little late because they'd been waiting for my thymo. And so I was a little dopey when they took me down from the benadryl and lack of sleep the night before(actually it was "up") and my Mom and boyfriend were able to come up with me until we got to the big double doors going into the operation hallway, where there is row upon row of operating rooms. Outside the room I had to sign some paperwork and agree to some things,and give (confirm) some info. Like my name, address, what I was there for. Then I was rolled in and asked to transfer myself to the operating table. A little odd, as it looks a little like a "lethal injection" table.

There are straps for your arms, and a little cushion nest sort of thing for your head, and leg straps to hold you down. They don't want you to slide off while they operate, lol. They chitchat with you and there were many people in there, about fifteen. They put the compression booties on my legs (up to the knees to keep the blood circulating, you where these until you are up and walking the day after), and I asked about if it were really possible (as I'd been told early) to do my stitches without staples. They said yes, because I am so small. And then they wanted to put me under,but I said, "Wait" because while I'd met everyone else on my transplant team, I hadn't met my surgeon and wanted to chit chat with him for a minute. He came in from the room next door, where my donor's kidney was almost out. And I asked him about his college (as we both went to the same one) and then I was put out. I don't remember that at all. Perhaps they put something in my IV that was already in my arm.

Next thing, I remember waking up and seeing the clock, I think I was out for about five hours. They were shaking me, which was annoying, because as I said, "I'm sleeping!!" LOL. They have to wake you up. I asked if it was working, making urine, they said 'yes" after I asked about my donor, who they said was doing well in recovery. I thought I might be ill (a side effect of the anesthesia) so they held my head to the side of the bed, but it passed. (I am still in the operating room at this point). I kept trying to pull at my face, but they would hold my hands down. I had the oxygen thing in my nose, and a pulse monitor on my finger. A neck catheter with four accesses, four IV things on my arm, leg booties, a blood pressure cuff, and a Foley catheter. And I was in a different gown. LOL But I felt okay, just very sleepy.

I went into recovery, don't remember getting there, and it was dim. It was the room I'd been wheeled through to get to the operating room. It was beeping with lots of monitors and stuff like that. I got to see my Mom and boyfriend maybe three times for ten minutes at a time from two pm to eight pm. I was not in pain per se, it just felt sort of thick is the only way I can describe it. I was very, very thirsty, but they only let you wet your lips or suck a little on a sponge covered with water. They are giving you tons of fluids to get that kidney working, and monitoring your urine output through the bag by the side of the bed. I had lost a lot of blood in the operation so they gave me some albumin. Until then it had been bloody urine coming out (not all that unusual) but then it went clear. They gave me pain killers I think every four hours through the neck line. The only pain, and it was very, very dulled, was when I'd try to speak up and talk to my Mom and bf. That used the abdominal muscles some, so it made it uncomfortable afterwards.

I was also given an ultrasound in the recovery room. My transplant guy that did the stitches held my hand while this clueless technician ran that little thing over my new stitches. She was like, "Oh this doesn't hurt." Bless my doctor because he said, "Well normally, no, but she was just cut open a few hours ago." I guess she doesn't make recovery room calls very often. They do this to check the renal artery flow. How well is it clearing and moving blood. It wasn't that painful. The anticipation was worse than the reality, don't be alarmed if you have one.

I was NOT swollen when I woke up, although I'd been told by a former neph to expect it. They told me I was sort of "dry" after the operation. However, by the middle of that night, down in my room, it was apparent that they were flooding me like mad. I was very uncomfortable then. This is normal and must be done to make that kidney work. But I gained 7.5 kilos overnight, and that in itself puts pressure on your legs, veins, and the incision itself. I was not in "pain" per se, but it was very uncomfortable. The next morning I had to get up and get on the scale. That in itself was nearly impossible as I was so swollen I couldn't bend at the waist. Later that day, they had to give me oxygen because the fluid had just filled me to such capacity that I couldn't breathe. Then they gave me Lasix (20mg) via my neckline twice a day for I think the next three days, just not the last day. That seemed dumb to me, like why not just stop flooding me a little sooner (like even five kilos would have been manageable) and even though they admitted they might have overflooded me, it wasn't by so much that they were alarmed, and it was coming out.

They'd have to lower the bed flat to do some measurement of the oxygen (i think) in your blood, which was just weird. It was non-invasive, just some tall tube with fluid in it and number markings, that they'd put next to my body. I couldn't really get completely flat at first, because obviously that stretches the incision site. But after I think two days, they don't do this anymore. Of course they come in constantly, to check blood pressure, and take blood to check creatinine, and everything else. Don't be alarmed by a high bp or a fast heartrate, that's normal post-op and with these meds, and trauma on your body.!! It goes down with time. And maybe not by a lot before you go home, but over the weeks.

I'd lost a lot of blood in the operation. If I get this done again, i will donate blood on my behalf. They never thought I'd need a blood transfusion so it sort of made me mad since I could have donated. Fortunately due to my young age, and overall otherwise good health, they did NOT do a transfusion. As that can complicate things. But my hemoglobin was 9.2 going in (with epo) and only 5.9 post op. They gave me more epo in the hospital (the nurse came in with a gleaming needle Friday night the day after surgery at one am. I found that hysterical, like couldn't they have done that during waking hours?) Post getting out, i did 20,000 for almost two months(stopped last week). I am up to about 11.3 right now. That was a major source of exhaustion for me for a long time.

So, getting up. Well, you will be alarmed at how slow you are moving and how you are sort of tipped over. And you might feel a little hmm, dizzy or sweaty, a little out of sorts. But you are also elated. You did it, you are up, you made it. You are lucky!! They gave me a painkiller then, and you know after that, I never really had any while I was in the hospital. But DO DO DO go home with them. They might forget, so be sure to get painkillers. Home is just different, not the same. Bed is more difficult, showering, etc. You'll want them.

So I walked a lot in the hospital. I had my IV pole the whole time because of the thymo treatments each day. They took the arm IV out the day after surgery. And I just had the neckline which is NOT uncomfortable, and makes it so much easier to draw blood. Much prefer it over the arm IV. I was on regular food by Sat. (operation on Thursday). Down five and a half kilos of fluid by the time i went home five days post-op Monday. And the Foley did not come out until Monday. That stunck, and most units do not keep it in that long, but this is just their protocol. That was not comfortable for me mostly because I got my period the day after surgery, and a yeast infection, and five days is just a long time.

Oh, and i was more swollen on the side the kidney was placed on, as that is normal, they have to sever a lot of nerves and a lot of veins get disrupted, and have to do extra work on that side. There was swelling ahem, down there, in the nether regions. Best to just not look at it. It was down about ten days after for me. But honestly, that made the Foley more uncomfortable than it would have been otherwise.

My stepdad could have gone home the day after surgery, but decided to stay until two days after. He was my rally guy, come on Nat, let's go for a walk!! He was funny.

You will be tired, but happy. It's a real gift. Now, I am going to post this for now, and I promise to write more in the next day or two, answering any questions you have, and just adding more details and stuff about the days after you go home.

How are you feeling????
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Just wanted to say a thanks for that Nat. a very good write up :D.

Hope I can catch you soon when I'm in NY:)

Cheers JMan
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
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R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Natalie...

Post by R30 »

Hi Natalie
Soooo many thanks for your posting. It's good to know what I may wake up with, and the fact that it's really quite manageable.
I'm feeling pretty nervy right now, and apprehensive for my mum. Our operation is on 25 October in Bristol (Southmead) in the UK, but I am going in two days beforehand to commence my immuno-suppression. I have also elected not to have steriod therapy and they have tailored a drug regime for me (nice to have personal treatment for a change...)
I am sure everything will be fine, but I can't help feeling nervous. This is only my second operation and the first, my catheter op, was mild by comparison.
Any other information or help you can give me would be much appreciated; and a BIG thanks for all you have posted so far.
Ruth
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Some more stuffs

Post by nycpetit »

Hey there again. Your lucky day is drawing nearer huh? It's an exciting thing, so other than the normal nerves, try not to freak out too much. You are getting your mum's kidney right? I think that's what you said. Living donor recoveries do often go a bit smoother. That kidney is working as soon as it's put in. So that is a huge positive for you.

Hmm, I was really not in a lot of pain as I said. However, every person is different. For example, if you do have abdominal muscles cut to put the kidney in, you might have more pain in recovery (I mean in the days after the operation and when you get home, in recovery they have you really drugged). I was so darned lucky. When the surgeon came out to talk to my mom post-op, he was most pleased (above all, lol) to tell my Mom that he hadn't had to cut any abdominal muscles. He slipped the kidney under and voila, they used little dissolvable sutures afterwards and that was it. So I am SURE this helped the pain process. I only had pain meds the day of and day after surgery. Took some home with me though. Everything is a different height at home. The bed is not easy to get in and out of, the sofa is the wrong height, and you just wish you could lightly plunk your bum on something at bum height and not have to bend down or push to get back up.

You are weak, you know. It's an operation regardless. I went home after five days, not sure what your standard protocal is over there. I honestly wasn't all that ready. I mean, another day or so might have helped. Then again, maybe not, some of what makes it harder when you leave is just that you have to do a lot more than you do in the hospital. Washing and getting dressed were not simple for me. I had someone else wash my hair, and it took me a long time to get washed. I couldn't get the side the kidney was placed on, the leg to bend enough (swollen) to get my darned sock on or pull my pants on. I mean, you do figure out a way, just don't wait until the last minute to get ready to go to the clinic, for example, cuz you are moving slower. I was probably back to almost normal speed in those things after a week at home. But I wasn't rushing myself. I just gradually noticed I could do more and that it was getting a little easier. I was lucky that it was hot NYC August, so i didn't have to worry too much about socks. I just put slip-on shoes on.

I felt woozy from all the meds. I remember feeling sort of hmm, a little nauseous when I got out. But hey, I made it up four flights of stairs right out of the hospital. And I went food shopping the next day. As an example, the first day out I did food shopping in a two block radius. That was a HUGE task. The next day I could do double that. And the following day I walked about 150 blocks.

Everyone's recovery is different. I mean, where they place the kidney, what type of drug induction, how you react to medication (i always tend to get sort of woozy), what is your pain point and tolerance. For me it was the darned swelling. But the doctors also said that if I were more normal size ( :lol: ) that the water they pumped into me wouldn't have been so uncomfortable. But on a 40 kilo frame, 47.5 kilos overnight feels horrid. It put pressure on everything, but especially my ankles. I had ankle/nerve pain the two weeks after coming home, but NEVER incision pain. I mean, I didn't have a knee cap, I had no knees, no elbows, no hand joints. I was just a big marshmallow. The water swelling, and pressure, and the multiple veins and nerves that are affected by surgery (but do heal) was just traumatic to my foot, esp. the right one. I had to take pain killers for that, how weird. Putting the sheet on my foot at night was too much, and it would just throb in the night after lying down. This subsided after about two weeks.

I was also itchy sometimes. I think that for me was from the thymo induction I had via IV in the hosptial for five days. I can't say you will experience this, everyone is different, and depends on what you get there. I was given something like Benadryl after I got home to combat the itchiness. The thymo can stay in your system for a long time. The Prograf and Cell Cept can definately give you some insomnia. Everyone I talked to at the clinic and who was in the hospital when I was was itchy at times, having trouble sleeping, and for them, the staples were giving them a lot of annoyance, those came out for them 10-14 days post-op. And a lot of us have bottom of the foot pain, and sort of hand burning, or even skin burning (a feeling) which we are told is from the Prograf. That burning feeling for me is most pronounced when i wash my hands. It's mild and in no way painful. These Prograf levels come down over time, and so some of that subsides.

You will probably have some sort of side effects. It's hard to say which ones, and doctors have heard many that don't all relate to one another. Medication and surgery just affects each person differently. It was probably most difficult to just sleep regularly. At first, your kidney passes much more urine at night. When you are lying down, the renal artery just pumps easier. You might only do like 300-600 cc during the day, and then at night, darn it's 500cc at a time. And you end up with 2600cc at the end of the day. After time, at least this is for me, it slowly starts to reverse itself, and you pass more urine during the day. But you know, that running to the toilet means you aren't getting much nighttime rest, so you need to sleep during the day when you feel the urge.

What else would you like to know? I was feeling more like myself after two weeks. But honestly at two months, I am still tired sometimes. Don't forget I was not on dialysis save for the night before operation, so I am told that for people who are on dialysis prior to surgery, really feel the benefits of that transplant sooner than a person who had the tranplant before dialysis. Most of all, best advice I can give, give yourself some time to say, "Yea I feel tons better." At two months I am starting to get there. You feel better right after, in the first two weeks, then the meds start to kick in, you see which side effects you are going to get, they get moved up and down (the doses), and your body starts to adjust. It just takes some time.

Let me know what else I can answer. I may be leaving stuff out.
R30
Posts: 631
Joined: Fri May 07, 2004 3:00 pm
Location: Cheltenham, England

Post by R30 »

Hi Natalie
God - you are an absolute gem! It's been really helpful reading your postings over that last couple of weeks - I really do feel better about going in for the op next Saturday now.
Great to know what to expect, although I appreciate I have not have the same experience as you.
Did I read in one of your earlier postings that you are already back at work (or is this something I made up in my pre-op befuddled head)? If so, wow, that's early. I was thinking I would have to take three to four months off work (I work at a very busy private school).
As far as my meds go, I am to be on Tacrolimus, MMF and something like Diozemab(....? never heard of it). I have elected not to have steriods due to previous experience of them. I will also be on Aciclovir for six months to try and combat any viral infections. Are these drugs you have had (not sure what Cellcept and Prograf are - sorry)?
Thanks,
Ruth
P.S. I will keep you all posted with my progress - and thanks for being an invaluable source of information - you have made my last week more bearable.
debbie
Posts: 62
Joined: Tue Jun 08, 2004 11:40 am
Location: West Sussex. UK

transplant drugs

Post by debbie »

Hi, sorry to butt in!
mmf is cellcept and prograf is tacrolimus... just the difference a bit of water can make!! I work in a school and have been told to take at least 6 months off but ideally the drs would prefer me not to go back til next school yr. I am in the classroom with 5/6 yr olds and chicken pox carries a huge risk apparently. However my Dad owns a local taxi firm and I went back there last night, only answering phones etc, just needed to get back to doing something!! My kidney will be 4 wks old on Tuesday :D Good luck and take care
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