Thursday 17 May 2018

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!