Waiting Time - Transplant Surgeon.

wing · Post by **wing** » Tue Sep 21, 2004 3:40 pm

Hi All.
Can I ask those U.K. residents among us, roughly how long does it take to get to see a transplant surgeon after transplant has been mentioned?
I appreciate that it will vary from area to area but I was seen by the transplant physician last December, who felt I would be a suitable candidate. She requested a series of tests - some routine, some specific - all of which I have had done and all of which are O.K. (I'm led to believe), and I was told that the next step would be referral to a transplant surgeon. I have heard nothing but am wondering is this usual? Does it take months to get to see them? - or have I been forgotten about?
I'm concerned as family members have had to have nephrectomy before they could be put on transplant waiting list - if I need this too, that's even more delay plus, method of dialysis will need reviewed, fistula will be required, waiting time before this can be used, etc. etc. - I'll be as old as Borris before I get on the list at this rate!!! (No offence Borris!).
I'm not desperate for a transplant (on the contrary - the prospect terrifies me!!), but I'd hate to be patiently waiting here for something that's not going to happen.!
Should I be asking questions of knowledgable people at this stage?
Your views and opinions would be much appreciated.

JMan · Post by **JMan** » Tue Sep 21, 2004 5:56 pm

My advice,

Send a fax, ask for a date.

In my case this brought a response in 2 weeks, all in all from, 'the yes I want to go on call' to seeing a transplant surgeon took about 6 - 9 months I think.

:EDIT: Just to add the reason I advise faxing (or sending a letter recorded delivery tho the former is cheaper) is that most hospitals have a written stated protocol or set of rules for written enquiries or complaints (eg something like, "we will endevour to make an initial response to written enquiries within two weeks"). Of course this could be a standard letter saying 'we'll get back to you as soon as poss' but more usually it brings the desired response faster.. Phone calls on the other hand (depending on whom you speak to of course) carry a lot less 'weight' to them and can more easily be ignored or forgotton. :EDIT END:

R30 · Post by **R30** » Wed Sep 22, 2004 7:05 am

I agree with JMan. I would pester your transplant unit for an answer. In my case things have got forgotten about (they took five weeks to send me a letter I had requested because they forgot), and it has taken some serious nudging for them to respond.
Thanks
Ruth

Mike · Post by **Mike** » Wed Sep 22, 2004 9:41 am

Hi Wing,

I would agree with R30 and Jman, hassle them!

From the time of my first tests to actually being on the list was about 12 months but I had done all the tests and seen the transplant co-ordinator after 6 months I think (my memory is not so good)

I did had a little bit of hassle actually getting on the list but it was due to my co-ordinator being on holiday and there was a little bit of bad communication between my unit and them. I had to call them a couple of times but my experience wasn't too bad.

Mike

Hal · Post by **Hal** » Wed Sep 29, 2004 8:03 pm

Hi,

I know from my experience they were appalling at getting me on the transplant list.

The consultant wrote to the surgeon and I had not heard anything for 3 months, so I called the secretary of the surgeon and asked for an appointment.

I then got the appointment for 2 months later. After being told the only tests I needed were tissue typing it still took another 3 months to get on the list, making it a total of 7 months to have 2 blood tests!

So as everyone has said - hassle! (but nicely of course!)

Hal.

wing · Post by **wing** » Sat Oct 09, 2004 1:01 pm

I took your advice chaps and I have this morning received a letter for an appointment with the transplant surgeon.
I'm nervous as hell!
Any advice as to what questions I need answered, other than the ones I've thought of?

JMan · Post by **JMan** » Sat Oct 09, 2004 2:51 pm

Well from the 21st to today.. I'd say thats a 'result'!! For the forum:)

Nice little list of Q's here: http://www.transplantliving.org/beforet ... tions.aspx tho very US orientated.. Food for thought though.

http://www.cambridge-transplant.org.uk/ ... ssment.htm

is UK based though more about the 'process' rather than questions to ask.

http://www.uktransplant.org.uk/ukt/news ... sdaine.jsp

gives a behind the scenes view of the transplant co-ordinators role.. I've met my transplant co-ord as he's also a renal doctor, but quite often most only see theirs for fleeting minutes at the time of the 'call'