Hints and tips needed for post transplant

Sorry, couple of typos (autocorrect!).

Until it's needed in nicely should read "bedded in nicely".

Per into the receptacles should read "pee into the receptacles".

Also, were you on dialysis, and did you produce urine at all?

If you were on dialysis but did NOT produce urine, your bladder may have shrunk. This means that when the bag comes out and you have to go yourself, you may find that you have to pee very very frequently with a little coming out at a time. Try to hold it in a little as this will help your bladder expand again. I was terrible after. A cup of tea would make me go 2 or 3 times in the space of 5 minutes. Don't worry, it will improve.

Couple of questions for you that will mean I can give more pertinent advice:

1. Where abouts are you (town & country).

2. Do you know which hospital is doing your transplant?

3. Were you on dialysis, If so for how long?

4. Do you pass urine or not?

If you are interested, you can try to add me as a friend on Facebook then you can direct message me whenever you like. If interested, look for Matt Lawson. My profile pic is me on a big blue motorbike.

Best of luck for the months to come.

Ace Matt. Some good stuff there.

Answers to some question. By the time I have the transplant I would have been on dialysis for 8 weeks. Passing loads for water. So I'm glad of that. We are having the op atvthe QE as I only live just out side brum( luckily I'm not a brummie!!)

Looked for you on fb but can't seem to find a picture of a blue bike?? Unless it's the speedway one?

Sorry, it's more of a black motorbike!! Defo not speedway, it's a large Yamaha and in the pic it's very sunny and I've got shorts on, no helmet.....just taken on a back road in sunny California!

Ah buddy, you're so lucky only having had it for 8 weeks! I've been on and off it between 2012 - 2013, then they finally gave up the ghost in 2015 so had 3 years of it. Got called in for the transplant twice be for getting lucky the 3rd call. First 2 times they damaged the arteries when removing it. My mum was going to be a donor but the docs said no as she has asthma and the op would be too dangerous for her. Bless your sis for being so cool to donate!

Yeah Stevie, I forgot to mention the taccy tremors. Does that stuff make you itchy sometimes as well? I usually get a couple of days a month when I could swear I've got fleas!!

Do you know how long you have to keep going to clinic for regularly? They haven't told me and I keep forgetting to ask!

Hi Matt yeh started to itch as well mate. And as you said not all the time. I hope to extend the periods in between visits to monthly soon but obv only on the say so of doctors. How's your own recovery going? Hope you're getting there. Btw Bryan I stupidly forgot to acknowledge your brilliant sister and the amazing gift she's giving you. Best of luck Bryan and hope all goes well.

Matt hope you're doing well

Stevie

Hey Linda,

If I can find enough time I'll try to post as much of my recent experience (6weeks ago now) as I can. Just follow this post!

Linda, this is everything I can think of as a recipient. Hope it gives you an insight........

Please note, this is all from my personal experience, but some of it will apply to all transplantees.

Firstly, if you’re not lucky enough to have a family member / friend to be a donor, you’ll be put on the transplant list. My Mum couldn’t donate as she has asthma and it was considered too risky of an operation for her at her age with that condition.

So, you’re on the list (I was on it for about 18 months until I had the transplant). You have to have a few tests to check you are fit enough to have the operation. These include an ECG, a physical activity test with sensors attached, an ultrasound of the heart and an ultrasound of your upper thigh (femoral arteries are where the blood supply comes from for the new kidney).

The ECG is where they attach the 12 leads to you and take a 10 second snapshot of electrical activity in you heart.

The stress test is in 2 parts. You’ll either have to walk for 5 minutes on a treadmill or do 5 minutes on an exercise bike. After that, they inject you with a drug to stress the heart a bit and then you repeat the exercise with the drug in your system. This is to check there’s nothing abnormal when you’re exerting yourself whilst a bit stressed. There’s no danger with this drug, you won’t even notice a difference with it inside you.

OK, so you’re on the list and they have the results (usually valid for 6 months so depending on how long you’re on the list for they may need repeating), so make sure you have your mobile with you at all times and don’t switch it off at night as you need to be connectable 24/7. As soon as they know they have an organ coming in (might be coming from a different hospital) and you are the lucky one on the list best suited for it, they’ll get you to go to the hospital ASAP so you’re ready to go. When you get to the hospital, they’ll take bloods so they can check mixing your blood with the organs blood to ensure there is no “attacking” of cells, as well as getting the usual blood test results (particularly potassium as it’s a danger to operate if that's high). If you’re on dialysis at the time of the transplant, they may give you a dialysis session if your potassium is too high.

Right, everything sorted, you get knocked out and the surgeons do their highly skilled bit and you wake up with a new kidney. The kidney is inserted in the stomach area, to the left or right and the blood supply is taken from the femoral artery. When you come round you might be in the HDU (high dependency unit) where you will usually stay for 2-3 days, depending on circumstances, but you may also go straight to the transplant ward. There will be a few different tubes etc. coming out of you.

A tube in your neck to measure fluid volumes and give temporary dialysis if required.

A small tube in your hand or arm (cannula) to give medications and pain relief.

A plastic drain tube in your abdomen to help drain away any blood and fluid from the operation.

A urinary catheter, to monitor urine output.

There’s also one you can’t see, the ureteric stent which is inside you, between the kidney and the bladder to keep urine flowing and give the stitching inside a chance to heal. The drain tube comes out after a couple of days. The neck line is about 3 days and the cannula in the hand /arm may stay until discharge in case you need meds / fluids. The catheter comes out after about 5 days. The ureteric stent will stay in for about 6 weeks and will be removed as a day surgery case. This is done by using a camera (think it’s called a cystoscope) with a grabber on the end, that passes through the urethra and is pulled out, all done in a couple of minutes and under local anaesthetic. When the catheter comes out, you need to keep track of how much you drink each day and pee in the urine receptacles the hospital provide. This is so the nurses can still monitor your fluid and urine input / output. For a couple of days there will be fluid drips (1000ml bag over 10 hours) going into you to keep the kidney hydrated / get if need to fluids passing through it. I had this for about 3 days. If you were in HDU, you’ll be moved onto the general transplant ward as you’ll be stable and not require high dependency. You’ll be encouraged to eat and drink pretty soon after the operation, usually after just a few hours. You'll also be encouraged and assisted (probably by a physiotherapist) to get out of bed and move around on the day after the op. This helps avoid blood clots and will help with the healing process. Usually, you’ll be kept in for just over a week if all goes well, before being discharged.

After discharge, you’ll have to attend the transplant clinic for about 3 months (all depending on progress / blood results /any complications etc. To start with, its usually twice a week as the doctors need to keep a very close eye on everything and especially check everything is functioning OK as well as watching out for rejection and infection. You'll be given a sample pot to bring a urine specimen on the day, and before leaving you will need to get your bloods test taken so they can check everything and will discuss the results on the following clinic appointment. Obviously if there is something critically wrong with the bloods they may phone you to let you know/ decide on a course of action. If everything goes well, after about a month to 6 weeks, clinic will be once a week and eventually you will be referred back to the hospital that originally referred you for the transplant (basically wherever you used to have dialysis).

There will be quite a lot of medication, definitely anti rejection medication for life. Other medication will include items to prevent ulcers and clotting, a course of anti biotics and others. It will depend on the particular patient, but you will definitely have to take anti rejection for life.

Well that’s all I can think of for the moment, but I’m open to questions I can try to answer if anyone has any.

Matt,

Thanks for all of this great info about your experience. How are you doing with your kidney? I hope that you are well.

Hey Linda, the kidney is doing just fine by stopping me having to go to dialysis at all!!!! Seriously though, every consultation I go to, 1 particular doc always says "you look a bit dehydrated, drink more" and I'm chugging 4.5L minimum of watermelon volvic a day.

The figures have stabilized and my creatinine is around the 110 - 120 mark. Would like to see it under the 100 mark, but hey we're running in half a tank of gas now!! I cant remember the exact GFR but it put me in either G2 or G3a. I'll double check next set of bloods I do. Errr, Friday I have a pre-OP for a niggling injury to be sorted so they'll take a bucket then.

Apologies, I didnt read the entire post again, so can you remind me of your situation please? Have you now had a TX or awaiting? Any dialysis....just " how are you Ms. Linda"? Do you have any follow up questions as I put a lot of info into the longer post in a compact fashion. Look forward to hearing your update & helping you out more if I can

M.