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Top Tips for those going in to have a tx

Posted: Thu Sep 25, 2008 12:50 pm
by MandyV
Helen and I came up with these tips which we passed on to the nursing manager, but not sure they were ever more widely shared ... hope any tx patients might find them helpful - any others could be added to the list.

Ten helpful tips pre-transplant

1. Pack light - you will however find it helpful to consider taking (in addition to your “normal requirements”:
a. Cordial (to make the large volume of water you will be drinking more palatable)
b. Eye Shade (to block out the lights that are always on - though sometimes dimmed - in hospital)
c. Loose slippers or flip flops (your feet may swell)
d. Loose clothes (e.g. tracksuit) to wear on discharge
e. I-Pod and headphones (to “chill out” )
2. You may want a small (i.e. £5 - £10) amount of cash to purchase newspapers etc - do not take in any unnecessary valuables.
3. Clean any nail varnish off before admission, and if you have long hair it may be more comfortable to plait or tie it back whilst you are bed bound to prevent knotting.
4. Warn your visitors that you will have drips and drains as well as monitors attached after the transplant - this is perfectly normal, but can look alarming to those unfamiliar with the environment. Ask the nursing staff for more details if you require them.
5. You will have a saline drip attached during the operation to ensure that you are well hydrated so as to support your new kidney - you may become somewhat bloated in appearance but this is normal, temporary and will be closely monitored by the medical team.
6. Step down procedure: immediately after your transplant you will be on the HDU ward for a period of time, but when they feel you are fit enough they will move you into a “normal” ward which will have a much higher patient to staff ratio. Owing to the occasional emergency admission, you may not have much notice of such a move, and it may not be at a particularly convenient time. The timing of this is very much dependent upon the individual, but may be as little as a couple of days.
7. During your stay in HDU you will have at least 4 blood tests a day to ensure that things are proceeding as expected, and to monitor your medication dosage. This will reduce over time after step down.
8. You will be put on a number of drugs post transplant, but the regime will be fully explained to you before discharge by the renal pharmacist (and clear and detailed written instructions provided). A renal dietician will also visit you to explain how your diet should change post transplant.
9. Especially if you are a female patient you may like to take in special face wipes, moisturiser, hand cream and even a vaporiser to freshen up.
10. Lastly also especially for female patients (though it could be helpful for all) - as the incision is an “L” shaped one, right near the bikini line you may want to have a bikini wax so as to be more comfortable post transplant!

Posted: Thu Sep 25, 2008 12:56 pm
by Laura
Excellent tips. Many thanks for those, Mandy.

Posted: Thu Sep 25, 2008 1:18 pm
by golightly
brilliant! thank you! xx

Posted: Thu Sep 25, 2008 2:01 pm
by Andy
What a great idea,

Also another tip for female patients...
Take sanitary towels... (after not having a period about a year i was totally unprepared).

ten top tips

Posted: Thu Sep 25, 2008 6:46 pm
by Helen Rambaut
To the 10 above I would now add (especially for anyone at Hammersmith)

For when you have stepped down from HDU to medium dependency so can ask someone to bring in when you get there:

A large mug so that when the tea/coffee trolley comes round (and you are having to drink a lot) you can get a really big cup instead of the tiny plastic glasses or cups and saucers. By this time you will be walking so not too difficult to rinse it out yourself. TX patients at Hammersmith are nursed along side other renal patients (whose liquid may be restricted) so getting drinks are not always the main priority for the staff.

A wine cooler (to put cold water in say a 500ml bottle). Jugs of water are provided but you have to ask for it cold/with ice etc. I found getting half water/half ice was best because gradually as the ice melted the water stayed cool.

Fetch large cups of latte from the coffee place on the ground floor once you feel able to explore beyond the confines of Handfield Jones or ask visitors to get them.

For breakfast have cereal (with milk); choose soup/juice option at lunchtime to help vary the taste of liquid. If your phosphate levels drop then ask if its ok to get Coke/Pepsi.

Pre op tell friends & family no flowers until you get home! They are NOT allowed on the wards.

Helen

Posted: Fri Sep 26, 2008 9:36 am
by poppet
These are all excellent tips well done :D

Posted: Fri Sep 26, 2008 11:24 am
by bigbuzzard
Another one for the list:

Despite what they may tell you about being able to eat a good meal the night before the op (I was told eat what I liked until midnight) - some restraint here should greatly improve your recovery in the days immediately after the tx. My donor and I had a celebratory 'last supper' involving steak and some good red wine. The repercussions weren't pleasant :shock:

Posted: Fri Sep 26, 2008 12:20 pm
by Andy
I would say that post transplant I wouldn't drink too many cups of tea and coffee... they are a diuretic!

Posted: Sat Sep 27, 2008 10:57 am
by Thumps
Can we make this a sticky thread? It's so useful! :D

Posted: Sat Sep 27, 2008 12:00 pm
by Aileen
As another one psyching up for the deed, all tips and info are most welcome. :)

ten top tips cont

Posted: Sat Sep 27, 2008 12:37 pm
by Helen Rambaut
Tea and Coffee may be direutics but in practice I found that by mixing the drinks I kept up the liquid intake more easily. I wish I had thought then of going to the coffee place to get a latte twice a day. My phosphate levels had dropped post tx (quite common I understand). So the milk would have been helpful. At this stage you are drinking to keep up with the kidney. And the real difficulty is overcoming the reluctance to drink more than you really want to. Boy is it hard?

On the ward the post transplant doctors were unconcerned about tea and coffee. They were concerned about how much you were drinking! Think the key is to vary the drinks. If you are drinking too much of one kind or another and its a problem they will see the effects show up pretty soon in the blood results.

Pre transplant I drank a lot of orange juice mixed with water (potassium tolerant). But post transplant I have gone off it completely.

Posted: Sat Sep 27, 2008 3:23 pm
by jenjen
Another tip from me (for women)

Bring nighties not pyjamas- The endless pulling up and down once the peeing starts can be painful on the incision site.

For everyone:
Lip balm!!

Posted: Sat Sep 27, 2008 11:02 pm
by xXx Holz xXx
Ooooo Thanks Jen, I always presumed Pj's would be best, but thinking about it your right! x

Posted: Mon Sep 29, 2008 12:55 pm
by golightly
Wow these are all great - am currently jotting them down in a hospital bound notepad as we speak! x

Posted: Mon Sep 29, 2008 1:11 pm
by claire
When I went in for my transplant I was so unprepared.

Please take in a few 500ml mugs and juice, this is a must.

Ask lots of questions before you go to theatre.

One question I didn't ask was, how long my scar would be. I was so shocked at the size of the scar when I was finally allowed to see it, I'm 5' 1" and weighed 6 - 7st at the time because of the type of transplant that I had (double) it went from my bikini line up and around my belly button then it finally stopped just under my bra line.

Its been very difficult for me to come to terms with. But I'm so grateful.

Claire xx