Top Tips for those going in to have a tx

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

Postby Pam » Wed Jul 29, 2009 8:19 pm

Abida,
I certainly do wish you good luck and hope that your creatinine becomes stable and lowers. It's kind of a scary time when your labs are off.
I appreciate your kind words! We all need some encouragement and I thank you! Curiously, PD has not been hard at all for me and I am doing very well on it-especially now that I have my cycler and my days are pretty much free! :wink:
Please take care of yourself and do let me know how you are getting along-I will say a prayer for you and keep you in my thoughts also...
Best wishes,
Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
Image
Pam
 
Posts: 866
Joined: Sat Apr 24, 2004 8:13 pm
Location: Springfield, Illinois, USA

Postby Kipper » Fri Nov 13, 2009 1:29 pm

Hi Everyone,
Just been shown this site by a friend on a car forum, didn't know it existed. I've been on CAPD for 2 years and am having a transplant 2 weeks today at Guys hospital London, sis in law is donating.

Anyone had the op at Guys and if so any tips, would especially like any info on the Simon hotel recuperative unit as no one seems to know anything, even the transplant co ordinator. Good tip about not having a big meal, I was planning on the curry to end all curries, perhaps not.

Not looking forward to the op but I've had a bellyfull of dialysis, strange how you become comfortable with something like PD and afraid of the cure, the devil you know I guess.

Going to Guys next week for final pre transplant tests, hopefully all will be OK. How long is the recovery period, I do a fairly physical job and have been told to expect 3 months.

Best wishes - Keith.
Kipper
 
Posts: 358
Joined: Fri Nov 13, 2009 10:53 am
Location: Jersey

Postby Thumps » Fri Nov 13, 2009 2:00 pm

Hi Keith

I had my op at Guy's last year, they were wonderful. Richard Bright ward is clean and pretty well staffed, my only gripe (the same in any hospital where you're in a ward!) is that you don't get much sleep! Take some ear plugs!

I took 2.5 months off work, but I work in an office. I'd say 3 months is about right. My recommendation would be to build up gradually - as soon as you feel able, go for a walk round the block each day, then a longer one, and so on. Going from nothing to loads again instantly will definitely knock your recovery back.

Congratulations on finding a donor!
Thumps
 
Posts: 1170
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Postby Kipper » Mon Dec 07, 2009 6:02 am

Not sure if this applies to all hospital but Guys pump you full of fluid during the op to keep the new kidney hydrated, I got 10 litres which for those of you on PD is a full box of bags. Result was I gained 10KG immediately post op, first noticed my fingers looked like sausages, then my arms and legs, everything had swollen ( and I do mean everything! )

This meant that when I was well enough to be discharged none of my clothes fit, I couldn't even get my slippers on. my wife had to go out and buy tee shirts and joggers in 2 sizes too big and new PJ's too, the weight does come off slowly but it's weird to go for an op and wake up a fattie.

The other thing I would say and it's not a criticism, more an observation of our budget cut hospitals. Make sure that the nurses know what you need, be aware of what meds you are on and make sure you get them. The nurses were so busy that on a couple of occassions meds were missed and I had to remind them, take ownership of your condition. Also when they come to give you meds and they move that little table over your bed, make sure they move it back, I kept waiting for someone to come past so I could get my water as I could only reach what was within reach of my hands. Seemed strange to be told to drink lots of water and they had moved the bloody stuff!
Kipper
 
Posts: 358
Joined: Fri Nov 13, 2009 10:53 am
Location: Jersey

Postby David1310 » Wed Jan 20, 2010 7:29 pm

Hi

Was advised in September last year that I would a new kidney, as my creatine levels had almost reached 400. So was told the best thing to have was a live donor to avoid the long process of dialysis.
My wife Debbie volunteered to be a donor and after the blood tests it turns out we are the same blood group!! So all has been progressing nice and smoothly. I am under Hammersmith hospital so am very happy as they are very good and efficient, as well very kind and caring.
Today was good day, as we have our operation date 10th Feb. So about 3 weeks from now.

Was please to see someone had kindly posted information on what to bring to the hospital, as have not had any operations before and was very apprehensive.
David1310
 
Posts: 3
Joined: Sun Feb 01, 2009 6:56 pm

Re: Top Tips for those going in to have a tx

Postby pocketwilson » Sat Jan 22, 2011 7:06 am

Take your own toilet paper!! The Freeman in Newcastle has paper made out of glass!
Image
pocketwilson
 
Posts: 110
Joined: Thu Dec 07, 2006 2:51 pm

Re: Top Tips for those going in to have a tx

Postby anti-duck » Wed Sep 28, 2011 11:58 am

pocketwilson wrote:Take your own toilet paper!! The Freeman in Newcastle has paper made out of glass!


Thanks for that tip; that's where I'll be having my transplant :P

Is there any good information regarding post-op? I've just heard that the side-effects of the anti-rejection drugs are not very nice.
anti-duck
 
Posts: 3
Joined: Wed Sep 28, 2011 10:53 am

Re: Top Tips for those going in to have a tx

Postby Rachael Turner » Fri May 11, 2012 5:16 pm

This thread is so useful - just a shame there is nothing like this printed for patients and donors.
My hubby found ear plugs really useful on the ward. I suffered really bad constipation after my transplant, and I think (just to be on the safe side), Bepathen (nappy cream) would have helped a little when I was in hospital (I have since been prescribed slightly better medication!).
Definitely a bigger cup / glass would have helped whilst trying to down the enormous amount of liquid that you have to drink.
Rachael Turner
 
Posts: 56
Joined: Sat Jul 02, 2011 8:04 pm

Re: Top Tips for those going in to have a tx

Postby pureserenity » Mon May 14, 2012 1:26 pm

I agree Racheal, constipation was the worst bit for me. Definatly needed a bigger cup/mug for the vast amount of fluids you have to drink. I found that knowing how much the cup held was useful too as different ppl said it was different amounts!! OH and a pen and paper to tally up the amount you drink really helped as well !
x
IgA nephropathy rapid progression - may 2010
Incentre Hemo Dialysis via neckline - July 2011
Live Kidney Transplant - 11th April 2012 from my second cousin Peter <3
pureserenity
 
Posts: 47
Joined: Tue Dec 14, 2010 11:32 am
Location: Stockton on Tees

Re: Top Tips for those going in to have a tx

Postby rheaybou » Tue Jul 17, 2012 7:24 pm

Anyone transplant in sheffield? Would love some tips/points on the hospital.

Get dates for two sets of third stage test next Thursday.....nervous excitement
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1353
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Top Tips for those going in to have a tx

Postby Thelma » Thu Aug 16, 2012 5:34 pm

I would add that, at least in Manchester, there is no HDU stay or step-down. I was straight back on the ward, and I gather that's the norm. I also stayed in hospital for fewer nights than expected. I was home six days after my transplant.
Transplanted 31st July 2012 - Vasculitis survivor
Thelma
 
Posts: 446
Joined: Wed Feb 23, 2011 8:51 pm

Re: Top Tips for those going in to have a tx

Postby Tibbs » Fri Nov 30, 2012 5:24 am

Shave anywhere you'll be getting any drips & drains, not just the Tx spot.

Key areas for me are the backs of my hands and my neck.

I also wound up shaving chest (for ECG) and the skin at the top of my forearm - they took most of my bloods out of the crook of my elbow.
Last edited by Tibbs on Tue Jul 02, 2013 3:11 pm, edited 1 time in total.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Tibbs
 
Posts: 1082
Joined: Wed Nov 30, 2011 11:59 am

Re: Top Tips for those going in to have a tx

Postby rheaybou » Fri Feb 15, 2013 5:44 pm

Headphones. A book or two. Anything you would want while at dialysis. I looked at the stuff another TX patient had and realised I had over packed. Shorts for the first few days for the guys as you will have the cathater tube in place. Listen to me all knowledgeable......my first was cancelled!
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
Posts: 1353
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Top Tips for those going in to have a tx

Postby MatthewC » Sun Oct 27, 2013 4:41 pm

I just donated on Oct 16th to my brother, in St George's. The best advice on this thread is EARPLUGS; my brother didn't know this (and I had assumed that he would have done some research) so I gave him some when he was disturbed by the patient in the next bed who was watching the same James Bond film on a laptop over and over again without using headphones!

Add eye shade (the free ones on most long distance flights) and lip salve as desirables, but I can't see the need for toilet paper mentioned earlier - never needed it...!
MatthewC
 
Posts: 64
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Top Tips for those going in to have a tx

Postby Thumps » Thu Feb 13, 2014 7:34 pm

I was in Guy's recently for a nephrectomy - nowadays they have a "welcome pack" for new patients when you're admitted, which includes foam ear plugs, an eye mask, toothpaste and a toothbrush, just like on a long haul flight :lol: Quite handy, actually!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
 
Posts: 1170
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

PreviousNext

Return to The KPG Forum

Who is online

Users browsing this forum: No registered users and 24 guests