Ten Tips for Potential Living Kidney Donors

I have some tips which any Potential Living Donors (PLDs) out there might find useful. Some of these tips I learned early on in the process, but others it was too late when I realised what I should have been doing, so you might benefit from my mistakes.  Some don't apply if you are making a non-directed donation.

1. Be positive. Make your decision to donate up front, and then go through the process which follows. This will make everything flow more easily as the staff will recognise your commitment; moreover, it will encourage your recipient when he/she starts to feel guilty about putting you through this.
2. Get fitter. It’s a long process of approval, so use the time to improve your physical fitness (especially your abdomen) before the operation.  This will both help the surgeon in the operation and aid your own recovery.
3. Take charge of the testing process. Never leave hospital without knowing what the next step is, or who will tell you, and when. Phone them for test results, as they tend to operate on a "no news is good news" policy. If you think you’ve already done a planned test, don’t be afraid to question the need for a repeat (I avoided at least one chest X-Ray, one ECG and a long walk around the hospital by questioning). 
4. If in doubt about anything, phone the Transplant Co-Ordinator and ask. This will show that you are interested and committed. I felt that each time I phoned that I was re-volunteering to donate; they don't want to be seen to put any pressure on you, and my call confirmed my commitment.
5. Get some ear plugs for the hospital stay after the operation. An eye shade and lip salve may also be useful, but the ear plugs really were essential for me. At least when I had trouble sleeping, it wasn't due to the noise!
6. Always take a book to testing appointments. You never know how long you will be.
7. Research the internet with care. I found that a lot of stuff on the internet is either/both from the USA (and hence slightly different) and/or wildly out of date - things have moved on so fast in recent times that anything dated before about 2000 is hardly worth reading. Don't be scared off by stories of horrible procedures involving removing a rib to access the kidney which took the donor longer to recover than the recipient; this is a prehistoric practice and is NOT how it's usually done now.
8. Help your recipient.  He/she may actually be more ill than you realize, and so will just not be able to do much research on the internet (Tim “worked” in a tired haze and then went home to sleep).  Do some research for him/her as well, and don't assume that they have a good knowledge of the operation and the time after - check up on what they know so that you can help them.
9. Feel valued. Each transplant costs roughly the same as a year’s dialysis so every PLD has a real financial value to the NHS. If the transplanted kidney works for 10 years then you will have probably saved the NHS between £300,000 and £400,000 according to the figures I was told.
10. Think of the wider effects. I was honestly surprised by the impact on my brother's family; they were the ones who had seen him deteriorate close-up, and the effect on them was wonderful (and emotional). Also, people in his church who I have never met have sent me messages of thanks for giving them their friend back. It really gets to me, this sort of thing. As I said a few days ago here, the Gift of Life is not just to the recipient but it goes far wider than that. It's the best thing I have ever done and I'd do it again if I could.

I should also include here two very useful websites:

Firstly, Di Franks' website http://livingkidneydonation.co.uk/. This focusses on altruistic (non-directed) kidney donation, as she was one of the first in the UK to do so, but it has a host of information which any living donor will find useful.

Secondly, the National Kidney Federation http://www.kidney.org.uk/organ-donation/living-donor-lkd-info-roche/.  I didn't find this until recently, or more possibly I did but failed to notice the need to scroll down! There is lots of information concisely presented all on the same page.