Top Tips for those going in to have a tx

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cph1234
Posts: 33
Joined: Tue Nov 27, 2012 2:10 pm

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

Post by cph1234 »

Thumps,

how did your nephrectomy go? It must have been ok as you are still here :wink:
I have PKD and may be having a live donor transplant later this year.

Clive
DeanH
Posts: 66
Joined: Thu Feb 12, 2015 5:01 pm

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

Post by DeanH »

Does anyone have any experience of having their transplant at Guys Hosp, Richard Bright Ward? Iv had 5 or 6 unsuccessful calls now where I have had to go in a wait around for a few hours and just wondered on other people's experience here once the transplant actually goes ahead.
ggidley
Posts: 7
Joined: Fri Feb 03, 2012 3:55 pm

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

Post by ggidley »

You will have to drink lots after the TX. Squash is good, but don't make my mistake and take a full fruit / full sugar one -it sent glucose levels too high. Use a "no added sugar" one, such as many by Robinsons.
Thumps
Posts: 1225
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

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

Post by Thumps »

DeanH wrote:Does anyone have any experience of having their transplant at Guys Hosp, Richard Bright Ward? Iv had 5 or 6 unsuccessful calls now where I have had to go in a wait around for a few hours and just wondered on other people's experience here once the transplant actually goes ahead.
I had my Tx and several subsequent operations in Richard Bright - I found the staff to be very good, the ward bright and clean and facilities good. I personally didn't get on that well with the food but I am quite a picky eater. As with all wards though, you are your own best advocate on what is right and not right for you, and you *will* need ear plugs and a mask to get some sleep - luckily they provide these in a "welcome" kit for new patients.
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Chris Wright
Posts: 121
Joined: Sun Nov 19, 2006 9:21 pm

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

Post by Chris Wright »

DeanH wrote:Does anyone have any experience of having their transplant at Guys Hosp, Richard Bright Ward? Iv had 5 or 6 unsuccessful calls now where I have had to go in a wait around for a few hours and just wondered on other people's experience here once the transplant actually goes ahead.
When i was done, i went down at about 5.00 in the am and was back on the ward at 8.30.

At about 9.30 the registrar told me to get some clothes on and get out of bed by the end of the day.

I dialysed once to help the new kidney.

5 days later i was given a portable catheter and went to the local pub with some friends.

10 days post transplant, the catheter was out, i ran up the stairs to London Bridge Station (now gone) and went home!

33 years later i'm still fine.

Guy's has been, and still is, one of the biggest transplant units in Europe.

They did 3 in that week when i was done in Sept 1981. And remember in the 70's transplantation was still "experimental". By the time they did me they had only just got the hang of it.

Whatever happens the level and depth of knowledge within in the unit is second to none, so you will get the best possible treatment.

Best of luck.

Chris
Transplanted Sept 1981

Still enjoying life like a 21 year old, or younger!
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

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

Post by SKM23435 »

I found this thread very helpful having read it some months before my transplant.

Just thought I'd add one further hint.
I had been told I was going to be difficult to match for a transplant so was prepared for a long wait on the list. When I got "the call" I was totally unprepared and at 6am the brain doesn't work very well, especially having being given the exciting news "come now". Although given the situation again I don't think I'd have had a bag packed ready, but a list with exactly what I wanted to pack would have been very useful. I could then pack my bag without the need to engage an overexcited brain.

My second hint would be that taking squash as previously suggested was a good idea - just don't do what I did and take grapefruit flavour! Grapefruit interacts with both the antirejection drugs and some statins.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
DeanH
Posts: 66
Joined: Thu Feb 12, 2015 5:01 pm

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

Post by DeanH »

I can echo that, the best thing for me were the bottles of sugar free squash, clothes wise I actually needed about two sizes smaller than before my double transplant as I'd lost so much weight maint from fluid but also just a lot of flesh weight, kidney worked straight away and i was passing about ten litres a day for the first 2 days while I was on a saline drip, I was discharged after 10 days (longer due to having a kidney and pancreas transplant), was a bit weak and aching but that all soon got better once I was home with home food and comforts.
sporti
Posts: 355
Joined: Fri Aug 25, 2006 7:51 pm

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

Post by sporti »

Hi


I had a live donor transplant and I wish I'd have realised that the anti rejection drugs can cause diabetes. If I had my time again I would cut out all sugar well before my transplant in the hopes that would help not get diabetes as I unfortunately now have Type 2 caused by anti rejection meds. For those who get the call for a cadaver transplant again I would advise start cutting down on sugar when on list and cut it out completely after transplant.
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

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

Post by Grey »

Interesting comment. No one has suggested I slow down on sugar. I will ask and if they agree even remotely take your advice.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

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

Post by Tibbs »

Grey wrote:Interesting comment. No one has suggested I slow down on sugar. I will ask and if they agree even remotely take your advice.
Sugar is going to replace fat as the 'bad' food soon, despite the big food manufacturers fighting tooth and nail to keep it off the agenda. Given the link between sugar consumption and diabetes and the effect diabetes has on kidneys, it's worthwhile considering reducing (or eliminating) added sugar in your diet.

Cutting sugar out of my diet has also done wonders for my gout as well.
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
sporti
Posts: 355
Joined: Fri Aug 25, 2006 7:51 pm

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

Post by sporti »

Hi Grey

I would imagine that since you are over three months from transplant or coming up and your glucose levels are normal then I think it's unlikely. Mine skyrocketed as soon as started anti rejection meds. However it is well under control and I expect to get rid of it when meds reduced. I do agree with Tibbs.
Dibs
Posts: 76
Joined: Fri Jan 23, 2015 1:29 pm
Location: Somerset

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

Post by Dibs »

As it has been over a year since this sticky post was updated, I thought I would. I've been on the tx list for 18 months now. I don't have anything prepared for the call. I carry my mobile and credit cards around, so that if I am out and about when I get the call, I can get my way to Bristol without needing to go home. I realise that some things might be needed eventually in hospital, but is there anything that you have to take with you?
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

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

Post by Tibbs »

A long charger cable for your phone/tablets.

The longest you can get is 3m I think and it's worth getting one that you know will reach from your bed to the plugs. Certainly in HDU in Hammersmith it's quite a long way!
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
Reckenzie
Posts: 6
Joined: Thu Oct 20, 2016 10:26 am

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

Post by Reckenzie »

Very useful tips which is helpful. Thank you mate.
Dibs
Posts: 76
Joined: Fri Jan 23, 2015 1:29 pm
Location: Somerset

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

Post by Dibs »

One thing that caught me out was that I was asked to take a day's worth of dialysis fluids etc as the transplant hospital are with fresnius and I was with baxters. That more than doubled my baggage and made using public transport difficult.
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