Kidney donation: back at home

OK, the final part of my adventures with kidney donation. After this I’ll shut up about it and get back to books, music and hills.

I arrived home. It felt colder than normal, not just because the first of many snowfalls was icing the moor. My lie about constipation ending became true, less than an hour after taking some Ducalease. That, and the stomach ache it caused, was never a problem again. After some real (as opposed to hospital) food I was ready for bed. I tried to sleep in my normal bed. However, it wasn’t adjustable so I had to lie flat and just couldn’t stretch out at all, it seemed that lying flat was stretching the wound too much. Neither could I sleep for long on either side, the pain from my stomach muscles was too much. Indeed, lying on my left side gave me a feeling that my insides were falling. I slept for an hour or so on my right, with my knees tucked up to stop my stomach stretching. Then I decided to get up. It took ages and was very painful. Luckily we have a reclining chair and for the next few weeks I slept in that. Sleep wasn’t a problem after that as I could sleep at an angle which didn’t stretch my stomach and the chair arms stopped me from turning on my side.

I had been told not to do anything, not even the dishes - it sounds ridiculous but when I tried a week or so later, stretching to put plates in cupboards hurt! But I felt that I needed to improve gradually.

Five days later I walked to the end of the drive. 

Again, it sounds ridiculous. I’d walked as much as I could in hospital but snow was everywhere outside and if I fell I wasn’t sure I’d be able to get up again. Still, it felt good to be out. For these first few days, all I could do most of the time was sit and sleep. At certain times I would try to stand up and wander about downstairs.

My son came home the following weekend. He seemed fine, his old colour and energy slowly returning. We spent the next few days together but his recovery was quicker than mine and he was able to drive and get about quite quickly. We didn’t talk much about what happened, I’m not sure we have even now. Firstly, neither of us talk very much. Secondly, what had happened was almost too serious for conversation. And thirdly, I hope, we didn’t need to talk about it: we knew.

For six weeks I visited the North Staffs hospital every Friday. Both Birmingham and North Staffs hospitals are new buildings. Birmingham is much bigger and cleaner and seems better equipped. North Staffs manages to smell, strange for a new building, and often had dirty floors. The entrance to North Staffs is crowded with smokers, both patients and visitors. Is the council seriously building smoking shelters? North Staffs staff are friendlier and more caring. Those were my impressions anyway.

After a few more days I tried a walk “around the block”. For those of you who know Biddulph Moor this is up Rudyard Road, along Top Road, down Leek Lane and back. For those of you who don’t, it’s about 2 miles, with some of the finest views in England. It only involved a 100 feet or so of ascent but it was very tiring, I could only walk bent over. The walk took a long time but at least I had done it and it was another step forward. I slept for hours the moment I got back.

So I gradually established a routine of a quick stroll, sleep, try to do something like read or work, sleep. Trying to do something almost always failed. Faced with 6 weeks off work I had all sorts of ideas - read lots of books, prepare some great resources for teaching, get used to my new laptop. None of this happened, I simply didn’t have the energy. I could just about reply to texts and emails in the morning. All I did apart from that was watch tv. That would be enough to make anyone ill but luckily, my dad brought me a boxed set of the Sopranos, so I watched all six and a half series.

I tried a longer walk, from Baslow to Bakewell via Chatsworth. It was going quite well, although any ascent made me get out of breath. But descending a muddy path through some woods I slipped, only a foot or so. This opened my wound a little so I had to go back to doing very little and seeing a nurse 3 times a week to stuff the newly-formed hole - an inch wide and an inch deep - with seaweed. It was somehow distressing to see red, shiny flesh and liquid oozing out. It set me back and made me feel more tired.

I was surrounded by caring people supporting me. Firstly my wonderful wife, running rings around me, doing everything for me, never complaining. My parents, always there. Teachers at school emailing and texting, offering books and dvds, pupils emailing me their work and saying hurry up back but make sure you’re better first. Friends near and far emailing and texting. Almost everyone I knew helped me to recover.

About a month after the operation I was able to drive again. Turning around to see while reversing might have hurt my stomach, but I always use the mirrors instead anyway! At this point I still needed to sleep for 3 or 4 hours during the day. I was able to walk upright and on uneven ground.

I returned to work after 6 weeks. My school was kind enough to suggest a phased return, so I taught older, examination classes and avoided the younger, more boisterous ones. All students were kind, thoughtful, supportive and helpful. I did 2 weeks full time and then it was Easter. Now I’m back to my usual routine, cycling to work as normal.

Most people ask 2 things: would you do it again? Yes, for a close family member it’s a simple choice to make. Did it hurt? This needs a longer answer:

• the cystoscopy was agonising for a short time, but not everyone will need this test
• the lack of a kidney does not hurt, I don’t feel any different
• after the operation I had pain through constipation and a soreness in the main wound
• the leakage of the wound didn’t hurt
• from the operation onwards I had pain in my stomach muscles. This culminated in a day of feeling as if I had “pulled” them all, fairly severe pain. This disappeared, but I still have a small amount of muscle pain, so I haven’t tried running yet, as I think this would jiggle the muscles up and down too much.

On the 9th of April, my son’s birthday, we were in Scotland, climbing A’Chralaig. Any route out of Glen Shiel is steep but short. I took my time, my son was far ahead of me, as he used to be. In time, delayed by snowfields, we reached the summit. Gusts of wind blew snow over us but the sun shone. It was clear. We could see hills we had completed and plenty that we still need to climb. It’s not often that life is as simple as hillwalking, but for once it was.

Kidney donation: in hospital

This is the 3rd part of 4 on my experiences of donating a kidney, posted here hoping that it will be of interest to anyone put in a similar position. The 4th part will deal with what happened after I left hospital and I’ll try to do an additional post on questions I’ve been asked.

I was admitted to Queen Elizabeth hospital (Birmingham) on a Wednesday evening and left the following Sunday evening. Before checking that the ward had a bed for me I did several tests as part of someone’s PhD thesis. He told me that he wanted to test the heart condition of donors before and after the operation as he said that although donors tended to live longer than average, because the tests they went through before being allowed to donate showed them to be healthier than average, nevertheless, some donors experienced a higher rate of heart problems. I thought it was a good idea to have a thorough series of heart tests before and after the operation, so I agreed to the research. After a couple of hours the doctor decided my heart was good and I was very fit for my age. The week before, a doctor had said that I would be fine as I was “among the fittest 5% of the population”. No, not fit like that. I’m no Olympic athlete either: I think she meant “healthiest” and I’ve certainly always been very lucky with my health.

We were told that our beds would be ready by about 9pm so we went to the pub for a drink and meal. It was a boisterous student pub, “The Gun Barrels” - friendly and with cheap food and drinks. Back at the hospital we were both given single rooms, ensuite no less. I felt no particular worry about what was going to happen, other than that the transplant had better be successful! I went through various tests - , temperature, blood, urine, blood pressure, swabs - before settling down for a good sleep.

I was woken to have more tests. The anaesthetist came to tell me what he was going to do. He seemed very nice and reassuring. The surgeon came to tell me what he was going to do. He was just as impressive, although it made me laugh that he used a marker pen to draw an arrow on me, pointing to the kidney which was to be removed. I didn’t see my son before the operation. He says he saw me as I was coming round, when he was being taken in. I was taken to the theatre, some nice conversation with the anaesthetist again, a mask and then nothing. Absolutely nothing. I think when you’re asleep, there is always some glimmer of consciousness or dreaming but this was nothingness - is that what death is like?

I was woken up and felt normal. No pain but obviously incapacitated. Attached to me were various things for holding electrodes (I forgot about some of these and found them at home, once I could move properly), a catheter, a line into the wound area for painkilling. The coil for this was sewn to my stomach. I also had a saline drip, morphine drip and oxygen tube thing that inserts into your nose. And I had been shaved from my belly button downwards. Oh the fun they must have had! I was shown how to press the button to get morphine. I used it once, later in the day, and fell asleep. Other than that, apart from once, I felt no need for extra painkillers. I was told, and had read online, that I should breathe deeply as soon as I came round, as this would prevent any chest infection/pneumonia. I did this, it didn’t cause much pain at all and I avoided any infection.

Once I’d come round properly I was taken up to another ward, for 4 people. I realised only then that I had left my laptop, phone, tablet, wallet, clothes all unlocked in the other room. But it was fine, everything had been moved to my new ward, it was all there. I just couldn’t reach them. I managed to stretch and get my phone and send a couple of texts, it took a ridiculous amount of effort. I kept falling asleep. I couldn’t stretch or hold the phone for long, or see what I was texting. 

I eventually came round again, a young man, visiting his father opposite me had donated his kidney a couple of days before. He told me what to expect, gave me lots of encouragement, saying such things as “you’ve done a great thing”. Strange considering he had just done exactly the same thing for his father. My time in hospital was made much better by the people on the ward. Opposite was Afraz. He kept us awake at night by hiccuping constantly, but that was hardly his fault. He had great dignity. And when my son eventually joined our ward he walked to the Costa at the front of the hospital (2 floors down and maybe a quarter of a mile away), in spite of having just had a transplant, to buy my son a croissant. Next to him was Glenroy, a bouncer/boxer/security guard, with the most wonderful combination of West Indian and Birmingham accents. His positive attitude, laughter and “Good morning Mr Windsor” every time I woke was joyful, life-affirming. Next to me was Phil, who by some coincidence came from where I do (Sneyd Green, Stoke-on-Trent) and supported the team I used to (Port Vale). Phil had been given the opportunity of a transplant when someone else refused one. His kidney function had been 11%, 10% is the threshold for dialysis, so the transplant had worked miracles on him. He was full of positive “no painkillers for me thank you, I feel wonderful. I don’t want that stupid wheelchair” comments, showing me that if the transplant worked, my son would be much better.

At this point my son was having his operation. We were to be kept separate at first, in case the poor condition of either of us affected the other. Besides, he would need more intensive care than me at first. Visiting time was from 2.30 till 7.30 and my wife soon came to see me. Up till this point I think the main part of dealing with this, the mental preparation, was something I just needed to do for myself. But after the operation it was the care of my wife and family that kept me going. Having someone to visit me, something to get ready for, people to talk to. She said I looked green on the first day. I’ve no idea what I looked like. It must have been torture for her to see both her husband and son go into surgery with all the risks involved, in a strange way I had it easier.

The hospital day starts at 6.30 - imagine being woken up by a lugubrious chap saying “can I do your bloods please?”. Tests, breakfast, more tests, a visit from the doctor, lunch, visiting time from 2.30 till 7.30, evening meal, more tests. Any urine I passed was at first measured via my catheter bag and then by me having to do all my wee in cardboard tubes and storing them under my bed. I had books with me but had no energy to read, I tried my best to keep up with people online but it took a lot of effort.

I was told I had to get up and get moving as soon as possible. The day after the operation I still had on the hospital dress I had for the operation. It wasn’t exactly fresh and had blood on it. I decided to have a shower. This resulted in a ridiculously long and painful session. Trying to get out of bed took what seemed like at least half an hour. My stomach muscles just couldn’t take lifting myself up. I eventually rolled onto my side as much as I could without falling off the edge of the bed and then pushed myself up. Very painful but the more I did it the easier it got. Once up I then had to walk to the shower. Trying to arrange the various tubes attached to me so that I could walk and taking the stupid pole they were all attached to wherever I went felt awful. But I had that shower and felt cleaner. I put a new dress on.

I had a plan and the determination to carry it out: to see if my son was ok (I was told that he was but that wasn’t enough) and to get out of hospital as soon as possible. I would do it in this order: get as many tubes as possible detached, wear my own clothes, walk as much as possible, including to my son’s ward. I asked a student nurse to remove my catheter, she checked with someone and then did. I asked the PhD student if I could have the painkiller feeds and the drip removed. It all seemed to go to plan and I’m not sure it would have happened so quickly if I hadn’t asked. Within a few hours I was free of that stupid pole and walking about my own ward. I couldn’t stretch enough to stand up straight and was walking around like a drunk Frankenstein, but I was walking. I asked where my son was and set off for his ward. I found him, having his back washed (no such luxury for us donors!). He seemed ill but stable. He hadn’t tried to get up. Perhaps being younger he hadn’t felt that he should ask to be detached from various tubes. He was surprised to see me up and I think that encouraged him to try for himself, which he did later in the day. Which led to us both trawling the corridors in some sort of zombie ballet. Seeing him cheered me up a lot, knowing that it had been successful and a worthwhile thing to do.

At no point did I feel any pain from my lack of kidney. The pain I felt was from the main wound (the kind of pain you would expect from a cut - stinging soreness), very weak stomach muscles and constipation. From Friday afternoon onwards I was not on any painkiller other than paracetemol. From the day before the op (Wednesday) until I got home (Sunday) I had not paid a lengthy visit to the loo. It was this that was preventing me from going home - doctors would not release me until I had “been”. Although one doctor did say “you’ll be fine once you’re at home, sitting in your own room, reading the Guardian”. On the Sunday morning I put clothes on that suggested discharge was imminent, packed my bags and lied to the doctors that I had been to the loo. They said I was free to go and, once visiting time for my son was over (who had been moved to our ward, so I knew he was with good people), I got in the car for the most uncomfortable ride of my life! Every pothole seemed to make my innards jump up and down. Only on leaving hospital was any kind of dressing put on my wounds - more of that next time!