Hi, my name is Christian Brazier and early 2011 I donated a kidney via the non-directed altruistic route. My name’s Christian, I’m 26 years old and work full time in Brighton and Hove. I live with my girlfriend and flat mate. I recently ran a marathon and play football regularly to give you an idea of my health and fitness levels. I thought I’d write an honest account of my current experiences so that anyone thinking about going down this route can get another view / angle on post op life.
1 week post op
It’s been 1 week since the operation. One word to sum up the post op experience? Strange. I’m sure it varies for everyone, certainly reading Michael’s blog has made me feel extremely lucky to be as healthy as I am one week on. I had a minor complication during the operation. A small hole was accidentally burned into the sack that holds the organs away from the kidneys. [EDIT : A while after operation when I saw the surgeon he made it clear that the hole that was burned in the sack was NOT a minor complication or mistake. It is part of the sugery and we should not have been told this. ] This allowed a tiny amount of air and blood to leak into an area of my chest where they should not have been. The consequence of this was tightness, a general all over pain in my chest allowing me to only take tiny breaths at a time. (Some of this may also have been a side effect of the anaesthetic) On the day of the op I didn’t really notice this pain as I was falling asleep constantly and on a morphine drip. The day after the op I came off of my drips. This is when I felt the general pain, not just in my chest but also my abdomen. That night I was wheeled for chest and stomach X-rays not really knowing why I felt the pain. When I got back to the ward I was told I had a perforated diaphragm by a ward nurse. They retracted this soon after because I think the doctor had spoken to my surgeon to gain some clarity about why I was in pain. I was put on tramadol for the pain but the day afterwards, had to come off of this as I felt I was hallucinating when I closed my eyes and felt nauseous and light headed. The staff were trying to get the right balance between pain killers, anti-sickness tablets and laxatives which was a bit of a struggle initially. I say laxatives because the staff were very keen for me to pass wind and solids before I left the hospital. This was quite difficult, although given that I ate absolutely nothing for 24 hours on the day of the op and then struggled to have an appetite, I probably didn’t have a lot of ‘goods’ to pass through. So, leaving the detail to the imagination, 2 suppositories and 1 enema later, I was the happiest I had ever been to flush a toilet.
Other incidents of note are as follows:
Day 1 (Day of Operation)
4 hours after I had been operated on, a pigeon found its way into our ward and walked under my bed. I pressed the button for a nurse, terrified that this bird would flap and pull my catheter out. When the nurse arrived she told me that I should only really press the button if something has happened to a person. (my mum knew by the look on my face how angry this made me)
Day 2
I was given a blood pressure tablet by a nurse. I queried this as my blood pressure had been good and strong. She reiterated that I needed to take it as it was doctors’ orders before clarifying whether or not my name was Gary. No, he’s sitting opposite I replied.
Day 3
Got to go home! That night I had been waiting for an hour for the doctor so decided to go for a part discharge so that I could leave. This is where a ward nurse officially discharges you with the doctors blessing and the doctor sends through relevant letters to you later. The bumps in the road were a bit tricky so I recommend having a pillow underneath your seat belt. I managed to keep down a double cheeseburger from a well known dirty food chain, which I had been craving for ages. Tasted great but didn’t have room for the second one, which is unheard of for me.
Day 4
In my own bed I managed to get a relatively good night’s sleep for the first time in days. The hospital ward was so loud at night with various people shouting. It meant that on average I would get maybe 4 hours sleep in little bits. Getting out of bed was tricky as Di mentions in her blog and tiredness of course was a big issue. Washing myself in the shower made me feel so tired. I learned from Di’s mistake and remembered to take my paracetemol regularly which helped the remaining pains. This day was spent indoors apart from one trip to the garden which was an adventure in itself. My girlfriend was amazing in looking after me and topping up my water bottle etc. I would have really struggled without her.
Day 5
We drove to Devil’s Dyke to have a walk, a very small walk. It was on this day that my mood dipped and I started to feel quite low. This was mainly a feeling of guilt around the worry I had put my girlfriend and mum through. I don’t think anything could have prepared them for this week. They were there every day without fail. I think there’s a real shock to seeing a loved one with tubes coming out of them barely being able to keep their eyes open. Some of the hospital experiences probably didn’t help make them feel too assured either. We have been told that the recipient is doing well but the overriding feeling at the moment is one of guilt. I had about a 2 hour sleep after the walk. My girlfriend says that apparently a side effect of anaesthetic is some slight depression.
Day 6
Managed to walk to the post box and back. This usually takes me 3 minutes but probably nearer to 15 minutes today. But I am noticing that things are becoming a little easier each day. However, I have now sneezed twice. This was something I was warned about. I was told to put both hands over the main incision, apply pressure and then sneeze. However, both sneezes came out of nowhere and the pain this caused was acute. It faded after about 5 minutes though. I am also developing a little tickly cough. Every time I cough to clear it, it hurts and doesn’t quite hit the spot. It affected my sleep last night in that every time I felt like I was about to drop off, I coughed and woke myself back up.
Day 7
This is the first day without my partner around as she had to go back to work. I managed to make lunch and write the majority of this blog which shows I am getting my energy back still more. I had to sleep in a separate room yesterday for a bit as I could not stop the coughing. I am getting a bit of a burning sensation just above the incision and it is still numb and bloated. The sensation in my lips has now fully returned. They had been quite numb after the operation due to the tube that was put down my throat. My walking is still small steps but I am feeling a bit stronger in that respect. Not sure I will be going out today though as I am feeling pretty tired.
Reading this back and reflecting on my experience, it sounds as though I am slamming the hospital. I don’t intend to. The majority of staff were absolutely brilliant, kind and caring. Even when I was having an enema they were great! But I want to give an honest account and these things did happen. Emotionally I am feeling better than I did on Day 5. The feeling of guilt is still there. At the end of the day I put myself at risk without needing to. If you love someone then that is a hard thing to accept and I can understand the mixture of emotions that family and friends are left with. Though on the surface this is a generous act, there is a selfishness to it that you can not ignore. No matter how much you prepare loved ones for the experience they are still going to worry and be upset. I know that some of the closest people to me were not keen for me to go ahead but I did it anyway. I’m not saying that they did not support me because they did, amazingly so, but I could tell that they would rather I didn’t do it. I could write an essay on the pros and cons of doing this and the emotional challenges for family, friends and donor. However, right now my eyes are starting to close so I will maybe put that idea on the back burner.
17 Responses to “Christian Brazier”
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Hi Christian,
Hope you are feeling better.
Bloody scary those hospitals aren’t they?
Rest as much as you can & listen to your body.
Stop feeling guilty everyone must be really proud of you i am.
If it dosen’t kill you it makes you stronger & that goes for all those that are looking after you, they will be sighing with relief by now & it will be becoming a great tale to tell!
Lots of love to you.
Anne x
p.s i ve signed up for next years Brighton marathon.
Christian
Good for you and try not to worry about anything you have said. I think you are doing really well.
Don’t be surprised if it takes you longer to recover than you had expected. I spent what felt like forever unable to do anything except sit on the sofa with my knees drawn up tightly and a cushion pressed to my abdomen. I think it was eight weeks before I could sit in an upright chair without pain down my side. And it was only after about 5 weeks following the surgery that the nerve damage started to manifest itself as intense burning pain. So be prepared just in case things show up that you hadn’t expected.
I found that I couldn’t take morphine (didn’t provide any noticeable pain relief and made me throw up violently which really hurts when you have big newly stitched cuts!) so this may be why I experienced pain for longer than some other people. It was never unbearable, though, and I accepted it on the grounds that you can’t have a kidney chopped out and expect it to be a painfree experience. Actually, it was the bloating that bothered me more than the pain. I found that harder to handle.
It was weeks before I could eat properly – I identified completely with what you said about people fussing at you to pass solids – I kept thinking “I have only eaten two digestive biscuits in five days, how am I supposed to do that”. In the end, they just got bored with me and sent me home anyway. I still struggle to eat the way I could before, but it is getting better, although I am cautious.
Someone told me that in some cases, it can take ages before general anaesthetic leaves the body, so you shouldn’t worry about feeling sleepy for a very long time.
Even now, I still get odd pains – they don’t bother me because they don’t last long, but it does bother my family when I suddenly gasp and hold my side.
If anyone had asked me if I would do it again I would have said, up to the point where my husband died, that yes, I would do it in a heartbeat. There were no after effects that weren’t acceptable or manageable. (Since my husband died, I do struggle with it – but that is emotional rather than physical.)
If anyone is thinking of donating, I would never want to discourage them from doing so. For the eight weeks after surgery that we had, I basically felt wonderful. But people need to be realistic and prepared for some pain, and for the fact that they may well experience some of the side effects on the scary list that the hospital gives you.
Have you had your six week check up yet?
Hope all goes well with that.
Look after yourself.
Rebecca
Hi Rebecca,
Sorry for the delayed response. I just saw your message today. Thankyou very much for it. (I hope you don’t mind but I thought I’d incorporate an update within my reponse to you).
I had a check up last week. They said that everything is in order and I’m doing fine. I am feeling good. I asked my mum to come along as I felt it would help her to air her views. We spoke to the surgeon about the issues we had had during our stay. He made it clear that the hole that was burned in the sack was NOT a minor complication or mistake. It is part of the sugery and we should not have been told this. A little confusing but I am passed caring now.
We spoke about whether or not I should make my experience of the hospital public. He asked whether or not it would be in the interests of ecouraging future donors. Whilst I would like to encourage people to come forward, I would never want to downplay the experience. Like you said, I think people need to have realistic expectations. These expereinces could happen to someone else and I am not going to shy away from telling people that. You should have all of the facts before you consider doing this. The staff we spoke to were apologetic with regards to my experiences and assured us that staff would be spoken to. For me though, ideally what I would like is for the hospital to turn round and say, ‘ok we know it wasn’t a grade A service and this is what we will do to try and make it better for future donors. We will work with you to try and make imporvements so that donors can reassure their family and friends before their operation.’ An idea my mum had was that donors should be given the opportunity to view where they would be staying. We spoke about bed management also, maybe moving donors to a room where they will be able to recooperate a bit better. But maybe none of this is realistic and within the realms of possibility within the NHS at the moment. Maybe, if some of their staff read this they would laugh and think, ‘you don’t know how difficult it is at the moment.’ Maybe they are right.
It’s my first day back at work today and it’s almost like it never happened! Apart from the scars and not being able to do exercise yet. I got a round of applause when I walked back in the office though, which was a bit overwhleming!
I read your blog Rebecca. I don’t know what to say to you other than how sorry I am. You did a very brave thing, that appeared to be working initially and it sounds like you had the cruelest expreience possible. I read about your internet support group idea. Were you putting together a chat room? It was something similar wasn’t it? I thought that would be a good idea. Hows that going? I hope you are well.
All the best,
Christian
Hi Christian,
I know your comments were to Rebecca but I wanted to add something. It seems hospitals are different in the way they treat people and your hospital seems to have not been as good as they could compared to others. At the Oxford Churchill hospital where I donated, in the pre assessment evaluations which were done week or so before the donation, I got to meet most people involved i.e.surgeon, co-ordinator, anaethetist, pharmacist as well as the tests and I asked all sorts of questions as well as them explaining their role etc. The surgeon even drew a diagram of where the incisions would be and talked about the recovery, but you mentioning would be good to see where you are staying, I was given a tour by the coordinator. I was taken to the day room where I would report and then shown the transplant ward where I would be or if full the renal ward. It certainly sounds like your hospital let you down badly and maybe you should persue it with them to see what they are going to do to improve things. All I know is that the Churchill was excellent in every respect bar one and that one aspect was it was hard to contact anyone during the evaluation, but the operation, recovery etc I could not fault.
Maybe you can keep following up at your hospital to see if the staff have been talked to and to see what changes will be made for other donors … what a bad experience you went through, which it should not have been.
Sorry to have commented on your comment to Rebecca but really wanted to just give my input on what you said.
So glad you are feeling a lot better and back to work. Hope mum is more relaxed about it all now also.
Di
x
Christian, I am glad you are feeling better and able to get back to work.
We did have a tour of the ward at Addenbrookes, but only because we wanted to see it and asked for it. So we knew what to expect.
As an altruistic donor, you wouldn’t be so aware of it, but I can tell you from my experience that the hospitals give much more attention to the recipients of organs. I was aware all the way through that once the surgery was over and my kidney had been taken, I would no longer be of much interest to the hospital, so that nothing that happened in that regard came as much of a surprise.
The support group I started is a Yahoo one and it is growing slowly but steadily. Thanks for asking about it.
Look after yourself!
Cheers
Rebecca
Thanks for your comments Diane and Rebecca. It certainly sounds like your hospital had it spot on Diane.
I am following this experience up with the hospital and have put in an official complaint letter but I’m not confident I will get anywhere. At least one hospital is doing it right and hopefully others will follow its lead. If one can do it I’m sure others have the ability to.
Back at work now and back to normality.
Good luck for the radio airing Diane! I shall be listening.
Christian
Hi Christian,
The only complaint if you like I had of Churchill was lack of communication. I found it hard to get hold of anyone to talk to from home. But when I did it was fine. Everything else was just as I felt it should be.
Let us know how you get on with your hospital.
Glad you are back to work and hope no after effects now.
TTFN
Di
x
hi christian, its kelly, your old house mate, if you see this message please get in touch, i have mail here for you from the NHS trust and think it is most likely related to this kidney donation so my be important?
Apologies for the intrusion, i googled you, its all i could think of, and found this site, sounds like its you, i saw you during the marathon run!!
Amazing thing you have done with this kidney donation, you are an inspiration in selflessness.
Best wishes
Kelly, email me at kelly_jelly01@hotmail.com
x
Hi Kelly,
I will email Christian and get him to come and take a look. I know some previous emails to him he has taken a few days (or more) to respond, lol .. but he will get my email.
He is truly an inspiration …
Cheers
Di
We are a group of volunteers and starting a new initiative in a community. Your blog provided us valuable information to work on.You have done a marvellous job!
Hello Christian, I am sorry your hospital was not up to the standard it should have been. I can understand more attention being given to the recipient as they are sick to begin with, we are in good health. I am donating to my sister in a few weeks and it is good to hear about any complications to donor as then they won’t come as a surprise to me should I suffer any of them. To be honest I was not expecting a pain free or complication free recovery as it is major surgery, so when I have in other places read about complication free recoveries it has certainly boosted my confidence.
Thank you for saying what happened Christian and I hope the hospital has taken on board what you have said. Must have been a very unpleasant experience for you when it should have been a very enriching one.
God Bless
Jennifer
Hi Jennifer,
Don’t get me wrong. It certainly was an enriching experience overall and I have heard that the recipient is doing really well. Nothing beats that. It was more for my close family that I was concerned as I don’t think they were prepared for the errors that occurred. Fortunately there were no major errors that happened though, we are just talking minor ones and now I look back on it it wasn’t too bad overall. Don’t have high expectations would be my advice and if you still are committed then go for it. I wish you all the best for your donation to your sister. I hope all goes well for you and her and you are very brave for stepping forward.
All the best,
Christian
It has beeen a week today since I donated my kidney to my friend. She is off painkilles and is having a good recovery. I feel the same as I did three days ago and my spirit is sinking. It has been good to read that this is normal. I hadn’t understood the extent of my dependancy during recovery and am feeling the guilt too. The hospital I was at showed the same preference of care to the recipient and I felt like a pest when I needed help. Also a nurse signed that she had given me painkillers when i hadn’t received them so i went from morphene to nothing followed by 2 paracetamol five hours later. i am reluctant to visit my friend as her knowingthat i’m not at all chirpy would riddle her with guilt and knock her back. Despite this I am glad that i have helped her and thankful for you honest words, now my partner can stop rolling his eyes and tutting at my incapacity to do much for myself. Best wishes to you andall those that value human life xwend
Hi wendy,
Sorry to hear about your experience. I am a good 6 months down the road now and what I can tell you for certain is that i don’t regret doing it. I think that low feeling, that guilt is natural and it doesn’t stay around forever, you can be sure of that. If you have a partner at home who is tutting at you and rolling his eyes because of your inability to do much for yourself, then my advice would be this: milk it for all its worth! Order one of those little side bells off amazon that sit next to your bed and ring it whenever you want a drink or some food. Really lay it on thick so that he feels the guilt, not you! But if manipulation of your partner isn’t up your street then I understand. When he’s out, try and do a little bit more each day. Set yourself small goals, as in walk to the lamp post and back, then the next day to the shop, then a little bit more etc. I know in the early days, just getting out of bed is a job so be realistic with yourself. The last thing you want is a hernia so take it easy but to give yourself mini challenges each day.
I am in contact with my recipient now and the effect a healthy kidney has on someone is unbelieveable. Nobody can ever take that away from you. Even if it had gone wrong during the op, nobody can every take away the fact that you stepped up to the plate when others wouldn’t. It’s worth it. It’s worth the crap expereince with the hospital, trust me. We just got unlucky with that, some will have good expereinces, others not so. We were the latter unfortunately. But we are still here and you will recover. It takes time and its frustrating. During my recooperation I started writing a kids story and signed up to do hospital radio. Give yourself a focus, learn a language, something not to streuous but that you’ve always been meaning to do. It’s not often you get to lay on your back for so long without having to work, so use it. Your biggest regret will be if you’ve done nothing with it when / if you have to go back to work once you’ve recovcered.
I had about 5 weeks off in the end. Judge it week by week. See what the difference is at the end of week 2 compared to week 1. The early days is very slow progress.
Take care Wendy. Fair play to you for doing it, I think it’s brilliant. Your friend owes you a pint I reckon.
Write back if you would like any advice at all.
Kind Regards,
Christian.
Dear Christian, it’s lovely to hear advice from those that know. The pain is now dulling into a tight ache and moving around has been easier. Julie, the recipient and i got together yesturday. She has been putting on a show to stop her family from overly worrying and in fact, has gone through a similar experience to me. My partner is delighted with the small improvements I’ve made, a stroll with my stick down the sea front, joining the family for dinner sitting upright at the table…in truth he has found it hard taking on all I do for him and our son, it’s been a lesson to him, dinner doesn’t simply arrive on the table! I don’t regret this, who would when a close friend turns from yellow to healthy pink? It is also easier to put my mind to use when not fogged by painkillers, hope your kids book gets appreciation. Best wishes to you, and thanks again for the help through the tough bit of my recovery. Wend
Hi Christian.
Im about to have my final scan to see if im a suitble kidney donor for my friend. As i live in Hove ure blog caught my attention as i assume u had ure experiences at The County in Brighton. Im so glad ure recovering but i have to say alarm bells are starting to ring as i feel im being very niave about the recovery process. Like u ive got afew close friends v concerned im proposing to put myself through this. Id thought it as a gift to improve my friends health but others are against me taking such a risk. The physical recovery does seem rather unpleasent but i was wondering how u found the emotional side. It seems its expected to feel depressed after….were u offered any advice or help with this. I truely want to feel what decision i make is based on all the clear facts of wot to expect for myself & my friend. I feel abit baffled to know wot questions to ask the doctors so if you have any suggestions id be very grateful.
Happy recovery….Vanessa
Hi linden, and sorry for the slow response to you. We have had internet trouble.and I’m sorry to you Vanessa for missing your message that you sent a year and a half ago! I would be very interested to know how things went for you?
Anyway, thank you for the message even though I now can’t see it on this message board. It’s in my emails. I’m years on now and I certainly believe the pros outweigh the cons. I have two children of my own now 3.5 and 8 months. I think the only reason I wouldn’t do it now is for practical reasons around being able to lift my children up and knowing how irritated my partner would be at me for leaving her to do everything! but when they were older I think I would still have done it.
The guilt didn’t last for too long, neither did the low mood but I think it’s Important to consider who will support you during the recovery process and to just make them aware that you could be a bit up and down. I didn’t actually ask Brighton hospital for extra support with the emotional side of things post up but I would imagine they would have offered a session with the counsellor had I done so.
Let me know how everything goes for you. Best of luck and it’s a great thing to do. I know my kidney recipient is currently travelling in Thailand which is something she couldn’t have done before so it really does make a difference.
All the best.
Christian