I thought it might be nice to share my experience of kidney donation with the world in the hope it may give somebody a piece of missing information that may help them make their own decision.
I heard about kidney donation during the summer via a radio phone in show and after hearing it, thought it was something I could do. I went to my partner and said “I’ve decided I’m going to donate my kidney, apparently you can donate it to a stranger.” I think my other half thought I was taking the mickey, but I had it in my head that it was something I seriously wanted to consider. At 32 and with no children of my own, it was a big decision to make, so I set about doing internet research and checking as many websites as I could.
After 3 weeks of researching what I could, I decided I was ready to take the next step. For me this was phoning the nearest donor centre and asking for an e-mail address, as I had several questions I wanted to ask before I could make a decision and wanted written questions and responses so I could keep going over them (much easier than remembering a phone conversation!) I spoke with a lovely donor nurse, and sent my e-mail onwards and very quickly got a reply, all with extremely satisfactory responses – a big concern of mine was being able to conceive in years down the line – and whilst there is no definitive study relating to kidney donation and pregnancy there doesn’t appear to be any issues either and so the general consensus seems to be it shouldn’t be a problem, I was happy with this and the other questions relating to my work environment and diving hobby weren’t an issue so decision made!
I decided that it would be easier to use a different transplant centre than the one I originally contacted due to ease of transport and so I got in touch with them. I phoned them direct and spoke with a lovely lady (living donor coordinator) who agreed to meet with my the next day. I arrived at the hospital, thinking “I hope they don’t think I’m nuts” but the nurse was lovely and asked a number of questions and explained a little about the procedure and tests. Several hospital investigations and blood tests, psychological evaluation and HTA (Human Tissue Authority) interview and approval – to be honest, she didn’t tell me anything I hadn’t already discovered. She asked why I wanted to do it and my response was (and still is) – “I donate blood, I’m on the bone marrow register and feel this is just an extension of those 2. I have nobody in my family, or aware of anybody in extended family or circle of friends who have kidney issues – Therefore I am quite content that I would not be putting myself or relatives in a bad position as it is hugely unlikely that anyone I know would require my kidney – and what it the point of saving for something that might never happen when I can definitely help somebody now!”
I was asked if I was happy to continue to which I agreed and then it all started from there. They immediately took my blood and checked my height, weight and blood pressure and then I was booked in for a, psych evaluation, chest x-ray, heart scan, kidney ultrasound, 24hour blood pressure check, a fasting glucose test and a Kidney function test – all the following week. Part of me was pleased it was happening quickly – as I’m not a patient person and when I make a decision I just want it done. But another part of me thought – wow that went quicker than I expected and I had to take a few deep breaths and settle myself that it was really happening.
After my results came back I was booked in to see one of the doctors to evaluate my results. I was told that my kidney function was within the acceptable limits – but the cut off was 80GFR and mine was 83 – so although close it was fine to go ahead My cholesterol was raised and I was advised to speak with my GP (who wasn’t in the least bit concerned.) Other than that all fine and tickety boo so then came round 2 of tests. More blood, a CT scan & another kidney function test but this time it was like being under an x-ray whilst they monitored a radioactive dye entering my system (it was fascinating to watch). These results came back all clear and I met with the surgeon at a different transplant hospital who reviewed my file and would be carrying out the operation if I got the go ahead. They also set a date for the operation as I had said there were certain times I couldn’t have it done due to some upcoming events. After that it was time to see the Human Tissue Authority.
I was probably most nervous about this as I really didn’t want them to think I was crazy (some friends & family did) – But the interview was fine and more like a chat to ensure I understood what was going to happen and was my decision an educated decision and I was aware of the risks etc. To be honest I had nothing to worry about – I had spent so much time researching and gaining statistics my other half said I could write a book and all the medical professionals I dealt with seemed surprised to the depth of my knowledge regarding the facts & figures.
That was the last I heard until a few weeks later I received a phone call from the transplant team asking me to go to the hospital for a blood test as they had a potential match for my kidney. I was surprised by this as I was still waiting to hear if I’d got permission from the HTA, but apparently they had just forgot to tell me and everything was fine. So a week later off to the hospital I went and bloods were whisked away from me off to the potential recipients team for testing – I was told if it was a negative match then we were good to go a positive match would mean they would have to find another potential recipient (this confused me quite a few times but hey hoe!) Anyways it was a negative match and with the operation already booked it was just a waiting game – and a final blood test (no more than 10 days before the op) was booked to make sure there were no changes.
And then the waiting began…………………………………….. it was weird because I’d always said I didn’t want to know who the recipient of my kidney was, you can build an image in your head of the person and if that image turns out to be wrong I could be left disappointed or maybe even regret my decision – so with not knowing it was great – I knew that I had made a decision to help somebody and that was all I needed to feel good -I also knew that if it failed I was happy that “at least I’ve tried!” However, that is where I became a little concerned. I am naturally a nosey person and do like finding things out, so I began to get concerned that it would do my head it that I wouldn’t know anything about the recipient and would I be ok with the wondering and it became more and more prominent in my mind, however with other events in my life I didn’t have much time to think and it was only the weekend before my operation that reality hit and it was at the forefront of my mind – a little worry and apprehension but not enough to stop me doing it.
I went into hospital on the night before and this was where you realise the strains of the NHS. I am a great advocate of the NHS and I think we are unbelievably lucky to live in a country where this is available, but they are under immense pressure and sometimes this reflects in the care you receive. Firstly I was shown to my bed and told by the nurse she would be back in 5 minutes to book me in – this turned into 2 hours. I was sent for a chest x-ray at midnight after arrival at the hospital mid afternoon with an operation scheduled for early the following morning.
Surprisingly I didn’t have a great night’s sleep, I suppose it’s natural to be nervous and I’m not a great sleeper away from my own bed so it didn’t bother me to much and eventually I drifted off but there were many interruptions from other patients and nurses and general noise so not the best. Anyways the morning came and got ready, was visited by the surgeon and a Live Donor Coordinator/sister – I hadn’t met this lady before but she was (is a great comfort and a real credit to the team.)
Then I sat about waiting and waiting and waiting until 3 hours later, closer to 10am than the 7.45 I’d been expecting, I was wheeled off to theatre. The anaesthetist was waiting and started chatting with me whilst hooking me up to machines then he said we’re going to inject you with morphine, then put you to sleep then we’ll finish off – I remember the morphine going in as I felt suddenly woozy (a drunk feeling) then within seconds – nothing I was completely gone!
I have no idea when it was over other than I remember shivering and was really cold as I came round from the anaesthetic and the people around me telling me to press the morphine buzzer. They were also telling me to relax and they were putting a blanket on me to warm me up and I’d be ok soon but I needed to relax the shivering. The blanket (called a bear hug) was warmed up and I went from being really cold to unbelievably hot, in a matter of seconds – this wasn’t good as I then needed to be sick and preceded to retch – PAIN would not be enough to describe the feelings I had. I felt like all my insides were trying to escape and I was in real agony. The team were great though and calmly explained they were going to give me some drugs to stop the sickness and asked me not to press the morphine until the sickness was under control – within seconds though I was feeling a little better. It wasn’t as traumatic as it may sound, it’s just, it wasn’t nice to experience.
After what felt like an hour or so I was wheeled back to the ward. I rang my partner and asked him to come visit and then I waited. I had my morphine pump and I was hooked up to the drip. I can’t say I was in any major discomfort, however I was aware of a my wounds – moving however was a different story! Every knock of the bed of twist or deep breath seemed to hurt but over time that settled. I was really surprised the scar was on my abdomen above my belly button as I really expected it to be on my side – I can’t honestly say I was told where it would be and I don’t remember being told it would be on my front but what was done was done to no point worrying!
During the late evening I became quite distressed as I felt the nurses weren’t that interested in how I felt and weren’t listening when I was trying to tell them – at one point I phoned my partner in tears as I felt very sick and the nurse had been gone over half an hour when I’d asked for something – it may not seem much but believe me it’s a lifetime when you’re suffering. I managed to sit on the end of the bed and the sickness eventually subsided by it was another issue with over busy staff and too many patients.
The following morning it was time to get out of the bed and sit in the shower – A fantastic healthcare assistant came over to assist me and gave me the help I needed without being intrusive – passing me clean bed wear, washing stuff, towels and even helped with moving the morphine pump and catheter and finally washing my back (the only thing I couldn’t do myself). The remainder of the day past uneventful and I was visited by the surgeon and the living donor sister – it was nice to know they seemed to care.
On day 2 of the operation I had a less than helpful healthcare assistant – she told me I had to get out of bed – which I did but then I was on my own – the chair was the opposite side to where my catheter and morphine pump were. I had to walk around the bed to site down, half expecting that as it was wash time and she’d brought me a towel that she would assist however the towel (along with my wash bag) was on the opposite side of the bed to the chair and I couldn’t carry everything but it was exhausting to walk around the bed so I couldn’t get them – after 45 minutes of sitting there with no help I eventually buzzed for a nurse, they came quickly but I have to admit I was a bit tearful by this stage. I had several more encounters with that particular assistant and rude would be an understatement and she really did put a dampener on my emotions and that I’d done a good thing – I didn’t quite enjoy my stay in hospital and really couldn’t wait to come home. Some people are meant to be in a caring role and some people just aren’t – I came across both of these types during my 5 days post op and the good ones are a credit to their profession the bad ones ruin the whole experience – and it isn’t all down to lack of funding and understaffing – some people care and others don’t & I wasn’t prepared for that when I went in – especially as I was doing such a selfless thing.
Anyways, then came discharge day – I was sent for a scan and then waited a further 8 hours from being told I could go home to actually being discharged. It was a long day and I was looking forward to my own home and seeing my 2 little dogs. My partner collected me and off we went. I struggled a bit at home – I had my first proper meal (hospital food was awful) and I was really uncomfortable, maybe due to my posture, but my food didn’t feel like it had digested and my stomach felt bloated and painful. I managed to get a shower and saw my scar for the first time properly – this was quite a shock! Whilst I had been told it would be 3-4 inches long, when I saw it in the mirror I thought it was 6-7 inches and got a tape measure to check. It’s about 3inches but what you think 3 inches looks like and the actual reality are 2 completely different things and it took me a while to get used to seeing the scar.
My first night in bed with a night to forget – I couldn’t get comfy and no amount of pillows would help. I also experienced a coughing fit – which is painful – again, feeling like all my insides were trying to get out – I sort of found a way to deal with it, holding my stomach and getting my partner to pat my back but it took a while to get used to and sounded quite pathetic.
By the end of week 1 at home (2weeks post op) I was bored and uncomfortable. I had found ways to deal with things, like how to turn over in bed, how to sit or stand, what wasn’t & was comfortable. I also discovered new pains – the worst being sneezing, I wouldn’t have wished it on anybody. I also received a card from the donor team at the hospital thanking me for what I’d done. It was an amazing thing for them to do and I was so grateful they’d taken the time to do that – it really brought a smile to my face. I also got a slight infection in one of the smaller wounds, but nothing major and this was treated with antibiotics.
By week 2 (3 weeks post op) I was managing fine and decided I could increase my activities. Gradually I took the dogs for little walks alone, made tea, washed pots. I was feeling weak but definitely on the mend – which lead me to a false sense of security by the end of week 3. I took my dogs for 5 mile walks 3 days on the run and by the end of the 3rd day I was in agony, I even convinced myself I had a hernia (as many of my symptoms matched Google) and so as I was back at the hospital for my month check up the following day I decided to mention it. I went off to the hospital and had some blood & urine samples taken by the donor coordinator. Then I met with the surgeon who examined my stomach and scars and said all seemed fine – he also checked for my non-existent hernia and said I’d probably just done to much and to take my time recovering. He then discharged me from his care and said I would have a follow up every 12 months back at the original donor centre who had done all the initial tests and investigations.
8 weeks after the operation I was back at work and with no real issues, no pain, no medicines. The only thing I have found to be any different is my skin. I have always had sensitive skin. I had eczema as a child and I suffer with psoriasis as an adult. My skin is more sensitive and I have found that if my skin gets scratched or rubbed I come out in an angry red blotchy rash it goes after an hour or so without interference and the doctors aren’t worried but it’s quite weird especially being a new thing.
Other than that I’m fine and life is carrying on as normal.
I haven’t heard anything from the recipient of my kidney, I know their sex and approximate age, I know the city the operation was carried out in, but that is all. And for me that’s enough. I mentioned earlier I was worried I would wonder about the recipient but I haven’t. It’s weird as the only time I think about them is when I realise I haven’t actually been thinking about them (if that makes sense). My partner (who isn’t nosey by nature) wonders more about them than I do, but he rarely brings it up as he knows I’m not all that fussed. I received a badge from the NHS to thank me for my donation. And so my story ends.
I am honestly glad I donated a kidney. I know that I have tried to make a difference to somebody else’s life and hopefully they will have that gift for many many years to come, but if it only lasted a few weeks – I have done something that many others would never even consider. If I knew then what I know now I would still do it again – you can never fully prepare for this as knowing something will really hurt and actually experiencing that pain are worlds apart. Knowing the NHS is underfunded and understaffed doesn’t prepare you for some of the treatment you receive – but I have hopefully given somebody a chance at a longer life and I will be eternally happy that I am responsible for that.
I would never suggest to anybody that they should consider doing what I have done, it is an immensely personal decision but it is certainly gratifying and I hope that my story may inspire others, if not to live donate, then to sign the organ donor register, and/or donate blood, bone marrow.
Thanks for reading xxx
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