It was at a family event in 2006 when I heard the first whisper that my brother Tim had kidney disease and would need a transplant one day. My immediate thought was that this had my name on it. It was not until early 2012 that this was mentioned again – his eGFR (whatever that was!) had deteriorated to the high teens, and he had been advised to find a donor if he could; I just felt that my time had come. We are from a large family and I knew that I was the right blood group. I think five of us volunteered but one was in Canada, one was the wrong blood group and one was not a blood relative, so two brothers went for tissue typing and we were both perfect matches (which is unusual). Since I was retired and that other brother runs a company with Tim, it was obvious to both of us that I should go first through the rest of the testing.
In truth I don’t think that many people outside of Tim’s immediate family realised just how ill he was getting. It is only since the operation that we have not only seen the change in him back to his old self, but also he has said that he “can hardly begin to describe” how well he feels, so I think he’s surprised as well.
There are lots of tests, as described in my blog and elsewhere. There is no standard set and each transplant centre will be slightly different; Tim lives in London and I live in Oxford but I had no real desire to travel that far to his hospital frequently and it was agreed that the Churchill Hospital, my local transplant centre, would do the initial tests. These covered blood pressure, urine samples, blood samples (every time!), ECG, ultrasound, CT scan, chest X-ray plus a couple of less well-known ones to measure my eGFR and do another sort of scan on my renal system. There’s nothing in there to worry or cause pain, and I found the entire process really quite interesting. There are also a few interviews so that they know a bit more about you and your medical history. During the whole testing process I felt that these people really seemed to value me for my commitment, but at the same time I knew that I always had an option to bail out with no reason needed for my change of mind. I was actually surprised as I continually passed each test – clearly I was fitter than I realized.
Eventually, Tim’s quality of life had deteriorated to such an extent that they agreed the operation could be scheduled. His eGFR still said that he was fairly healthy but he was in fact barely existing. What I didn’t realise was that if a donation had not been planned then they would have already been making preparations for him to be on some form of dialysis. This is seriously not nice for a patient as it effectively imposes a new, highly restrictive lifestyle on them, quite apart from being one of the factors that may limit the life of a transplanted kidney. Had I failed testing at this stage, Tim would have had to go on dialysis as a matter of urgency.
At this stage it all got even more interesting as we met the surgeon from St Georges who was in overall charge and would actually remove my kidney (she wouldn’t do Tim as well because the two operations are conducted concurrently in adjoining theatres, with me leading). The date was set and things moved up a gear. There were some final tests and the HTA interview and, almost before we knew it, we were arriving for admission on an October Tuesday morning.
The day was spent on tests, interviews and forms and actually went quite quickly. Once again the staff were brilliant and sensitive to our needs. After our spouses had left, Tim and I soon went to bed, aware very much of the big day ahead. On the Wednesday morning I was showered, changed and ready to go with my DVT stockings on by 7am (these stockings have a hole in the toe so that they can check your toes during the operation as this is a useful monitor of your condition). At 8am I walked up to the anaesthetist’s room between the two theatres and the next thing I knew I was in Recovery, being told “wake up, it’s all gone very well”. (Later on, phrases like “textbook operation” were mentioned.) I was soon decently conscious but woozy, a bit uncomfortable but not in pain. Soon after, Tim was wheeled in beside me and I was sure from the large bag of urine that at least the new kidney was working well already. It was then around 3pm, and I had actually been operated on from about 9am to 1pm; Tim was in from about 12 to 2.30, I believe. By 4pm I was back on the ward with my wife, surrounded by lots of tubes and wires. That night was pretty uncomfortable as I never really got to sleep properly; I was continually itchy and aware of the tubes and the annoying toe holes in the surgical stockings! Additionally every movement was potentially a muscular pain – even a gentle stretch to reach something like my water.
After the ward round the next morning (Thursday) I was removed from all the tubes except a drain from my wounds. This gave me an almost instant improvement as the general wooziness and the itching were, I believe, side effects of the morphine that I had been on. A price worth paying for freedom from pain, I suppose, but from now on all I had was paracetamol. Soon after that I stood up for the first time and walked down the corridor to see Tim who was looking better than for a long time. It was around then that I realized that my movement was improving and there was now very little pain at all; there was just an ache from my stomach, largely due to gas pressure inside pushing on the wounds. Visitors came and went, amidst much happiness from Tim’s family, who could see his change much more than I could. They really didn’t need to thank me for what I had done as I could see what it meant from the joyous look on their faces.
I then got another bad night’s sleep which included me getting a temperature, having some blood taken at midnight, going for a chest X-ray at 2am and then having some antibiotic at 4am to sort out a minor chest infection. By the Friday ward round at 9.30 my temperature was down to normal and the consultant declared that in his view I would do much better staying locally than in the hospital so I was discharged. A variety of visits and actions followed, one of which was the “pain nurse”:
“Hello, I’m the pain nurse. On a scale of 1 to 4 how bad is your pain?”
“Er well, actually I don’t think it even rates a 1. Is 0.2 an option?”
“Are you sure?”
“Well, last year I had a needle stuck in my upper lip for two minutes to give me a local. I reckon that was a 10 out of 10, and on that scale this is nothing.”
And so I walked out to our car at 1pm, only 48 hours after leaving the theatre. Jane was clutching my large bag of medications, one of which was the rest of a course of antibiotic for the earlier chest infection. I was leaning forward gently as I walked but otherwise there were no outward signs of what had taken place. We spent the next few days locally with a brother who is a retired GP and then returned on the Tuesday for some quick tests and a check with the surgeon. She pronounced herself very happy with my progress and the healing to date, and reckoned that I was very fit (for my age?) and also had a high pain threshold. We immediately left to come back home to Oxfordshire where my recovery has continued apace. I know that I have had an easy ride, leaving hospital in record time with no pain; I am only having trouble reminding myself that it is still early days and I must not overdo things, despite how well I feel.
Meanwhile, we had visited Tim on both Saturday and Sunday. By then he was looking really good – literally “in the pink”, sparkling blue eyes and able to think clearly without feeling tired, with no headaches or other aches as he had become accustomed. Tim was discharged on the Monday, and it is now the following weekend. He has just sent out an e-mail saying:
“It may well be an old cliche, but in this instance it is not. The last 9 days have been life changing. Yesterday morning we had to get up at 7 for a hospital appointment, and I woke my wife up. There is absolutely nothing strange in that, except for the past 18 months that has never happened. Previously after 8 hours solid sleep, a cup of tea would arrive to wake me and 40 minutes later I would be able to keep my eyes open. After waking up every morning with pain in my legs, back, chest or neck (or even all 4) and heavy limbs it is a pleasure to lie in bed at ease in my own body with no pain – it has all gone overnight. And that is with a 12″ long cut across my lower stomach.
Sometimes transplants take a few days to ‘wake up’ once they have been done. No such thing with the legend of Matthew’s kidney: overdrive from the first minute…”
The surgeon told me that on Saturday she had asked him how he felt, and he had replied “I cannot start to tell you how much better I feel already”. If I had wanted any thanks at all, that was it, and the sense of satisfaction at a “job well done” was immense.
I have a number of tips for any Potential Kidney Donors (PLDs) out there who wish to donate to someone they know (not all tips will apply if you donate to a stranger). Some of these 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.
- Be positive. Make your decision to donate up front, and stick to it. This will make the process 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.
- 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 help the surgeon and aid your recovery.
- Take charge of the testing process. 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 asking). 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 in doubt about anything, phone the Transplant Co-Ordinator. 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!
- Get some ear plugs for the operation. An eye mask 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!
- Always take a book to testing appointments. You never know how long you will be.
- Research the internet with care. I found that a lot of stuff on the internet is either/both from the USA and/or out of date – things have moved on so fast in recent times that anything dated before about 2005 is hardly worth reading. Don’t be scared by stories of horrible procedures 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 done now.
- 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.
- Feel valued. Each transplant costs about 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
- 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. 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.
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