Pain

It is now four weeks since Tim and I were operated on St Georges; the time seems to have flown past and I have healed well, while Tim is also doing very well. Most people I have spoken to seem to have an expectation of kidney donors suffering some considerable pain for a long period.  I suppose in a way that was my understanding, although I think that possibly people are just preparing you in case you suffer such pain; then, when you don't, you feel happy about the situation.

Whilst I was training in the RAF (a very long time ago), the often-heard mantra was that "pain is only in the mind"; an alternative was that "pain is for wimps". When younger, I used to endure the dentist without an anaesthetic as I found that the pain of some b*****y great needle being stuck in the roof of your mouth was far worse than suffering the treatment without anaesthetic. (NB Yes, I know things have improved since and yes, that old dentist was an absolute thug and an awful dentist to boot.)

Today, I mentioned my almost complete lack of pain in the last four weeks to a friend who told me of an anaesthetist he knows who, like the RAF, also believes that pain is genuinely in the mind. I have to say that I think I agree. Over the years I have learned to relax in the dentist's chair. You start with your neck and work down through every part of you, consciously relaxing the tight muscles; when you reach your feet you start again, as those ones will have tightened up again by then!

One fairly recent experience of severe pain was when I had a small growth removed from my upper lip. This was done as day surgery under a local anaesthetic which was administered by the surgeon. He said "short sharp scratch" and proceeded to stick a needle in my upper lip for the next two or three minutes! I lay there trying to relax myself and became aware of the absolute streams of tears flowing down the side of my face to my ears and thence to the back of my neck. I have never before or since experienced anything remotely so painful - there are, I am told, a vast number of nerves in your lips, and I believe it.  After the operation I said "You lied!" and he replied that he had to as if he told the truth then every patient would leave the theatre before the operation!

So, using the scale of my lip pain, I have been re-assessing the pain I have suffered in the last four weeks. Really, the worst pain was when my stomach generally objected to the whole idea and started acting up. The expanded stomach pressed on the largest wound which caused a significant awareness of its presence, but compared to my lips I don't think it even classes as pain, more just as severe discomfort. In the same way, in hospital I itched (a reaction to the morphine?) and couldn't sleep because I just couldn't get comfortable.  There were times on the first day when any movement seemed to require care and many movements were impossible, but I suspect that this was as much due to my brain simply stopping me from trying as opposed to actually experiencing pain. Even when I sat on the edge of the bed and then stood up for the first time, it wasn't painful but rather I was afraid of being rushed when I felt very delicate.

I have no doubt that I have been very blessed in this experience. I would not like to give Potential Living Donors the idea that donating a kidney is always as pain-free as my experience, as I am sure it is not. I know that I could even now suddenly find myself doubled up, especially if attacked in my midriff by some wayward child, and I am not even going to try to touch my toes!  We all react differently to pain, and I sympathize with those who suffer more than their fair share. However, I am sure that having a positive mental attitude to pain could be a solution for many people in a similar situation.

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.