There’s a reason I waited and published this section second; it was much harder to write than the post about practical aspects, and part of me worries it might be harder to read too. I know both from personal experience and from the work I’m involved in, that there are so many misconceptions about what going through a kidney transplant is like, and how recipients “should” feel before, during and after this completely life-changing experience.
Hopefully this goes without saying by now, but I want to add a reminder that just as everyone experiences different physical effects throughout this, the psychological impact varies greatly also. Some people feel like they breeze through, while others describe it as the most difficult thing they’ve ever experienced. In reality, I think most of us fall somewhere in the middle.
As with my last post, I’ve included a list of support resources and organisations at the bottom, so please do make use of these if you feel like they’d benefit you.
I didn’t know what I didn’t know.
It feels a bit redundant to say that I wasn’t mentally prepared to have a kidney transplant; I don’t think anyone ever is. It’s not as if my renal team didn’t “do enough” to help with this, it was more a case of there only being so much they were able to do. I was healthy enough to undergo the surgery, and had been told in advance about at least some of the practical plans I needed to put in place, but from a mental and emotional perspective I didn’t know how much I didn’t know.
Every potential recipient receives some routine psychological support, in the form of a pre-transplant assessment by a psychologist. However because I was already having regular appointments with one anyway, my assessment was incorporated into our routine discussions. While this went some way towards preparing me in the sense that they made me think about how I’d deal with practical aspects, there was a whole host of other issues that didn’t emerge until afterwards, and I don’t feel like I was prepared for those because I didn’t realise they’d be a consideration.
Something my psychologist particularly helped me with was my attitude towards being “on the waiting list”. This is a strange time, almost like limbo, and no doubt everybody handles it differently. Personally, I found it helped a lot to try and forget about it. I knew that if I started living my life as if I was “waiting”, thinking only of all the things I would do “when I get my new kidney”, I’d miss out on the life I still had in the meantime. It obviously wasn’t the circumstance I’d have chosen, but it was the one I had, and I had the choice to try and make the most of it.
While I don’t think there was ever a point where I expected to be “fixed’ or “cured” after my transplant, I definitely expected to recover more quickly than I did, and I’m not exaggerating when I say that overall, I felt worse before I felt better.
I don’t remember much from the first day or so afterwards, only a random collection of things I’ve pieced back together from text messages, selfies (!?) and bits of conversation. The movie-worthy moment of “I woke up and suddenly realised that this was what healthy is like!” never happened for me. This is the case for many people, but at the time, it was quite a shock to go from excitedly expecting to feel better, to “My new kidney’s not working and I also feel like I’ve been hit by a train.”
Sometimes I feel like people who talk about transplants focus so much on how amazing it is that organ donation can take someone who was desperately unwell and give them back a healthy life that they forget about the bit in the middle which is often drawn-out, painful and really really hard.
I’m not who I was
A few days post-transplant a pharmacist appeared. She attempted to explain (to my still exhausted and drugged self) all the different medication I would now be on, and when and how I needed to take it. I know this session was supposed to be helpful and reassuring, but in reality it left me thinking “I’ll never get my head around all this”, and convinced I was going to poison myself or kill off my new kidney within the first few weeks! Obviously, that didn’t actually happen, and I now have absolutely no problem keeping track of what I need to take and when, but I’ll never forget how confusing and intimidating this conversation was, and how much it would have helped to have had at least some of that information before my transplant so I had time to start to make sense of it.
The longer-term impact of this new medication was a whole different ball game, especially because it was just as much psychological as it was physical. Initially, I had quite a bad reaction to one of the drugs I was given. This resulted in me becoming ill enough to lose a large amount of weight very quickly, simply because I was too sick to eat. Fortunately this was resolved within a few months, however I then had longer-term side effects also. My weight was up and down, my skin had a mind of its own and my hair thinned out significantly. My hair loss in particular really affected my self-image for the next several years until I finally discovered some Biotin supplements that helped, and I’m grateful to have had a transplant pharmacist who made the time to help me investigate what was suitable and safe to take.
For a long time, I was ashamed to admit how much these things bothered me, as I worried I’d be judged for being shallow or ungrateful.
It’s hard, but it gets easier
When I was discharged from hospital, this was not the end of things. I’ve been pretty open in previous posts and conversations that for the first year post-transplant, my mental health was worse rather than better. I wish I had understood three things:
- It was normal.
- It wasn’t my fault.
- It would get easier.
I wish I’d realised that not only was I one of a huge number of transplant recipients whose mental health and emotional wellbeing was on shaky ground, that, all things considered, it wasn’t that surprising! Not only was I physically recovering from surgery, I was also trying to reassess my whole future, plan what I was going to do next, and figure out how I felt about it all! Over time I’ve become more well-attuned to how I’m coping, and have got a lot better at asking for help and support when I need it.
I know there may well be some recipients who read this and think “I never felt that way, I was totally fine after mine!”. However I feel like there are far more people who respond the way I did, and who don’t feel like post-transplant mental health, depression and anxiety are spoken about often enough. Our recovery is hard and requires not only huge physical effort, but also huge mental effort.
Even now, nearly five years later, I still have days where I worry about the future, and I have yet to have a blood test which hasn’t been accompanied by an anxious wait afterwards until I know that everything is as it should be.
In the early days, counselling helped a lot. It gave me the space to get my head around it all and work out which aspects I could change and do something about, and which aspects I couldn’t. It also allowed me to accept that even though I was “lucky” to be transplanted and doing well, it was still ok to have days where I was frustrated and angry that I was dealing with this in the first place. Acknowledging this didn’t cancel out my gratitude to my donor’s family or stop me being optimistic about the future.
More long term, I’ve discovered that knowledge is power, and taking control of proactively learning about my condition and managing my own health has also really helped me manage my anxiety.
The other side of all of this
I’m acutely aware that my experience as a recipient is only half the story here. While I can’t comment on what it’s like to have a live donor, I know that receiving a transplant from a deceased donor brings with it a very broad range of psychological and emotional issues that took me several years to properly come to terms with.
If I had to name one defining moment of this whole experience, something that will stay with me for life, it would absolutely be the way I felt, at 2 am, sitting in the back of the taxi arriving into Manchester off the motorway. I remember looking out the window and seeing the orange lights on top of all the cranes, and listening to Cyndi Lauper and Michael Jackson on the radio. I also remember thinking about my donor’s family. I didn’t know anything about them then, but I’ve thought of them every day since. Making contact with them was something I always wanted to do, although this doesn’t mean I don’t struggle with complicated emotions around the subject.
As much as I try to stop myself from feeling this way, I often catch myself wondering whether I’m “doing enough” to make the most of having this kidney, and feeling a real sense of responsibility for looking after something that will never really quite be mine.
I know lots of recipients celebrate the anniversary of their transplant every year, and as much as I want to do the same, I haven’t yet. I can’t quite put my finger on why, but I think I subconsciously still feel like it’s somehow wrong to directly celebrate having benefitted from another family’s loss. Over time I hope this changes though, because I love the idea of doing something to acknowledge the date and the extra year of healthy life I’ve had.
Surround yourself with people who get it.
One of the best things I’ve ever done to help myself cope with my transplant and everything else kidney disease has thrown at me has been forming relationships with other patients. Admittedly there’s a huge cross-section of society represented within our comparatively small group, and it’s unrealistic to expect to see eye to eye with everybody or to automatically “click” and get along with someone just because you happen to share a medical condition. However with enough time and effort it’s absolutely possible to identify people you connect with, and investing in these friendships has helped me a great deal.
Various hospitals and transplant units seem to differ widely in how much they encourage and facilitate this, which I think is a shame when it’s so beneficial. My advice to someone who wants to meet others with similar experiences would be to investigate what your unit offers, but to also reach out online to patient support groups and social media platforms. While it’s obviously important to be cautious about who you trust and how much information you disclose about yourself and your health, there are sincere people out there and real communities to be found if you look in the right place. Also, if your transplant unit has connections with a regional British Transplant Games team I recommend you join it, even if you aren’t into sport. The transplant games are an amazing opportunity to meet a huge range of other people with similar experiences.
Clearly my support system doesn’t just consist of other patients, I have numerous friends and family members whose only knowledge of CKD and transplant-related topics is what they’ve picked up from knowing me. I learnt very early on that it’s best for everybody if I temper my own expectations of how supportive and understanding it’s fair to expect these friends to be. Someone who hasn’t lived through what we have will only ever understand it from an outside perspective and this means that support from them will always look very different to support from other kidney people. No less valuable, just different.
So what now?
Even with all the challenges and difficulties and complicated emotions, there’s never been a day where I’ve regretted having my transplant. Nothing difficult I’ve experienced since has even come close to outweighing the benefits I’ve reaped. No transplant is ever a cure, regardless of how successfully it functions or how well the recipient feels afterwards. It’s dangerous to suggest that this is the case, not only because it can set up unrealistic expectations for a recipient’s long term health, but also because of the pressure it puts on us to behave as if everything is suddenly absolutely fine.
I have a stable, successful kidney transplant and I still have bad days. I still get ill. I still worry. I’ve still had to make some changes to my life that mean I’ll always be different from someone without a chronic illness. However I’ve also learnt that we’re all a lot more adaptable than we give ourselves credit for! We can only do the best we can with what we have at the time, and realising this is what gave me the headspace to focus on what’s important, and let go of things I can’t control or that don’t really matter all that much anyway. This is the key to really making the most of what is, at least most of the time, a really good, happy, full life post-transplant.
If you’ve read something in this post that’s made you feel like you could do with some professional advice or support, have a look at this list of resources. Please note that they are all UK-based, as I only want to recommend groups and organisations I know to be reputable. However I still cannot take responsibility for any interactions you might choose to have, and urge you to ALWAYS consider your own medical team to be your first point of contact.
Kidney Care UK: The UK’s leading kidney patient support charity, they offer counselling, patient information, advocacy and financial grants.
NHS Organ Donor: The official NHS website for organ donation.
Young Adult Kidney Group: A Facebook support group specifically for patients between 18-30 years old. I help to run this and would love to meet you!
Kidney Beam: An online-based exercise platform specifically for kidney patients, funded by Kidney Research UK. Definitely worth a look!
Understanding test results: A resource from Kidney Research UK detailing how to interpret your test results and providing other tips for taking control of your health.
British Transplantation Society: This is primarily clinical information, but it’s still interesting and credible.
Mind: A mental health support charity.
SHOUT85258: A confidential, free, text-based support service.
Samaritans: 24/7 mental health crisis support.
Beat: UK’s largest eating disorder support charity, offering support online and via phone.
Thanks so much for sharing this. This is the first time in 12 years since I’ve had my kidney transplant that I’ve properly heard another perspective.
It’s amazing how similar your experiences are to mine and yes no one apart from those that have actually been through it will understand the rollercoaster of a ride it is.
If I worry or complain about an issue I feel guilty and am sometimes made to feel guilty with comparisons of people in worse or different situations. ‘It’s not like cancer!’
The mental and physical side effects can be over powering at times- god only knows my battle with my weight, hair loss, breakouts, tiredness over the years
I am eternally grateful and yes the benefits outweigh all the negatives put together. Mentally I just wasn’t prepared. I will get in touch with my unit about support groups- I think I need to hear from those that have been through the same.
Thanks so much for sharing your thoughts. It actually makes me feel like my thoughts, worries and concerns are ok.
Sending lots of good health vibes!
Reading your blog brought back old memories and I completely identify with you having had 2 transplants both with totally different experiences. Knowledge is power. I am also a writer
Hi Holly, absolute 100% spot on blog of exactly how I too have struggled with things even though I have had a kidney transplant 5yrs ago. So much of your story is also how I have been/felt too.
Thank you for sharing your experience. I hope u continue to feel better, thanks again, Mx
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