Researching Kidney Donation

Looking back over the six years of this blog, I have been most gratified by the response of many people who have found it helpful. I started out by trying to fill a gap which I perceived in doing my reasearch - namely, that it was hard to get good information on-line about the process of donating a kidney - so I wanted to be clear about what actually happened to me; the blog also fulfils an unexpected purpose as it provides a wonderful reminder of exactly what was done to me, as I wrote entries very soon after things happened and my memory of that time is fading!

It is true that there's lots of other data out there, but I found an awful lot of stuff that was so dated (or even old but undated) that it was positively unhelpful and misleading - things like the old method of cutting you wide open and removing a rib - I am amazed that people did subject themselves to that, and it's been done laparoscopically now for over 20 years, I think. There are also a lot more stories which are so emotional and detailed that you can't easily find the little nuggets of information which would answer a particular question. Then there are the others who don't even tell you which country they are in (I'm in the UK), which is quite important as things like testing are done quite differently, quite apart from how the hospital is run and the important question of who pays.

It does annoy me that there are many websites (I won't give links) which emphasise the negative aspects of donating a kidney. Yes, sometimes complications do arise but the probability of that is very low; it seems sad to me that these sour articles keep on appearing and possibly deter potential live donors from further research. There is one particular US site where an individual seems to have taken upon herself the task of educating the public about the risks; she makes many valuable points and I agree with her about the lack of good data about donors post-op, but she glosses over the positives. I wonder what her motivation is?

However, make sure that you find a balanced set of information preferably, if you are in the UK, from UK websites. I have mentioned Di Franks before; she was one of the first altruistic donors in the UK and her website  is still one of the most comprehensive there is.  Don't just take our word for it, find out all you can, ask questions and satisfy yourself about the risks to yourself. However, I still think that I could not have lived with the knowledge that I could have helped my brother, but I hadn't donated and he had then died. When you look at his quality of life now, of course it was worth it!

I would like to think that the single entry on this blog of which I am most pleased is my top ten tips for potential donors. These were created with the specific aim of helping other people to prepare for their operation, and at the time of writing that entry has had 265 page views. If you haven't read them, then have a look as I think they are still most helpful.

Recently I found a website called Feedspot which has a link to "30 top kidney donor blogs" here; this blog is the 7th on the list and, in fact, is the top one actually written by a donor.

Just to emphasise, I am perfectly well apart from an aching back with which I have suffered occasionally for 20 years, and the recent occasional twinge of gout which I am unable to link to my kidney donation 4½ years ago!

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.