Transplant Surgeon Meeting Advice

[kitkat]

Hi everyone.

The last 6 months I've been going through the work up to receive a live kidney transplant. All my tests and everything has come back fine, so now I am ready for the appt with the transplant surgeon. I was wondering if any of you who have been lucky enough to receive a transplant have any questions you think would be good for me to ask at my appt next week? I'm not really sure what the right things to ask are, so any help would be much appreciated! Thanks

[SKM23435]

I think that by the time I saw the surgeon most of my questions had been answered. He went through the risks of the operation and success rates of different types of transplant.

However the questions he asked me that I'd not really considered were relating to my donor.
How did I feel about my healthy friend going through surgery with its associated risks for no benifit to themselves?
What did I think we're the biggest risks to my friend? What were my biggest concerns about him?
How would I feel if the transplant failed?
Assuming a successful transplant, would it affect our relationship in the future? Or an unsuccessful transplant?

I thought these were very tough questions. As you see these were questions with no right and wrong answer. They were just to make me think about the emotional aspects. To be honest I'd been ignoring these questions not wanting to face them.
I suppose it also gives the surgeon the reassurance that you are not paying a stranger.

We did go on the paired exchange lists.
However after 3 unsuccessful runs I was lucky enough to receive a transplant from a deceased donor. I was relieved that my friend hadn't had to donate (but he says not as relieved as he was!).

Good Luck.

Let us know how you get on.

Sue

[Grey]

My first comment is actually most transplant surgeons are very good, and we do well to trust their judgement. I had my transplant done in Liverpool and only have the highest praise for the whole team. In y case because I was lucky enough to undergo a smaller awake operation by the same surgeon, 3 hours mind you, saw just how at home he was in the theatre as opposed to the man I knew from the visiting surgery. No surprise though, he is not a good people person but that does not matter when you are laying open on the table in an operation, his skills count then.

Anyway, do not be put off by all the warnings about what can go wrong, they are legally obliged to tell you that stuff, if someone is very unlucky something may go wrong but that is the nature of life, most operations go without hick up. Looking back there is no way I would stop the procedure under any circumstances, it is a truly life changing procedure, even with the effects of the Immune suppression med after.

Questions I asked, were in the main just curiosity, a bit about the preparation procedure, what will happen, a bit about the anaesthetic procedure, although before the op you will have a chat with them, how long the whole op will take, a bit about the recovery procedure, first few hours back in the ward, WATER INTAKE REQUIRED, although once you come out of the theatre you will have a drip feeding you at least 4 litres a day, all the pipes that once you start to gather where you actually are, the neckline etc and how and when each gets removed and how long all things being equal you will stay in hospital.

My wife donated and was out of hospital way before me, strong as an OX and has no side effects at all, bar a bit of obvious pain associated with having a kidney taken from her back. By the way your new kidney will be plonked in front, and takes a while getting used to the lump but you do.

Your donor may like to read something like this http://diaryofakidneydonor.blogspot.co.uk/ just by way of some idea of what happened.

Here is another here in the UK https://www.youtube.com/watch?v=iXbJZpjeOX4 Perhaps a good one.

You may have a peep at something like this, https://www.youtube.com/watch?v=Pti8C28a_0w (I have not seen most of it but it is someone's experience.
Good luck but I'm sure you will not need it, the teams are very good.

Grey

[kitkat]

Thanks for your advice everybody. I had my meeting yesterday which was a lot shorter and tbh less informative than I expected. But i suppose overall it went alright, even though he might not be my actual surgeon on the day as it will just be any of the 3 they have at the hospital. Also found out that they don't overlap the donor and recipient surgeries which I was lead to believe by the other people I've already seen but once again not a huge deal I guess.

He thinks (given that all my brothers remaining tests go well) that the surgery will happen around april/may next year. That seems so far away and the whole thing doesn't feel too real yet, I guess as we get closer to the date I'll adjust to the idea. Just seems like a such a life changing scary thing :/

Thanks again for your help

[MatthewC]

I'm surprised that they don't overlap the operations - they did at St George's for me and my brother. I thought it was just one of the mitigation factors that the kidney is "uninstalled" for as little time as possible. Or do they just not have the facilities (i.e. two adjacent theatres and enough staff)?

[rheaybou]

Where will you be having the operation. Maybe someone here has also had surgery at the same place?

My LD transplant didn't overlap, the kidney came back to the renal ward as I was in surgery. My meeting with the TX surgeons varied. To go on the list it was a matter of talking to the surgeon.

For my transplant I met with another surgeon and pharmacist, discussed risks etc.

[kitkat]

The reason for not overlapping the surgeries is that the transplant department is only allocated one theater in the hospital. I'm actually not in the UK (I hope thats ok) and my country is pretty small which I guess is the reason for only one theater available. It just seems like the sterilizing and set up time in between the two operations would take a long time.

I actually emailed my transplant co-ordinator today with a few questions, one of them being if everything is fine and we get a surgery date whether I'll have more appointments so I can get better informed. So far no one knows which of the immune suppressants I'll be taking and stuff like that. I'm not sure if I mentioned before but I''m the type of person that likes to know as much detail as possible before something like this, even the not so nice details.