The kidney transplant assessment process involves a lot of information. A LOT of information. Written notes and leaflets, referrals to websites and external organisations, numerous conversations with health professionals, all of which are intended to go as far as possible towards preparing potential transplant recipients for what they’re about to experience. But what about the things that aren’t in the booklets, or that never come up in clinic; the kinds of things you only get to know about by experiencing them yourself, or by speaking to other recipients?
I got thinking about this a little while ago and decided to ask some other transplant recipients what they wish they’d known too. The number of responses was overwhelming, far too many topics to fit into just one post. Therefore, this is the first of two posts, where I want to talk about the practical side of what I wish I’d known (excluding medical information or advice, obviously!). The next post, detailing the emotional and psychological aspects is coming later in the week.
I should also add that I’ve included a list of support resources and organisations at the bottom of this post. At the moment everything listed is based in the UK since I’m not familiar enough with organisations overseas to feel comfortable recommending them.
Getting the ball rolling
As I was writing this I tried to remember the day that I was told I needed a kidney transplant. I can’t, but what I do remember is that the whole process started earlier than I expected, and took much longer than I thought it would. This is mostly because everyone who needed a kidney transplant would ideally be able to have one preemptively, before they reached the point of needing dialysis. However in reality this only happens in a limited number of cases, most often when a potential recipient already has a suitable live donor identified and the transplant date can be scheduled in advance. While some patients do receive a preemptive kidney transplant from a deceased donor, these are less common.
Alongside the length of time involved, the other thing I wish I’d known about the process of going on the transplant list is that part of the reason everything starts so early is because of the sheer number of tests and assessments potential recipients have to undergo. There are many different hospital departments involved and even with the best will in the world they don’t always communicate with one another particularly well! I very quickly learnt that being polite, well-organised and just a little bit assertive helps a great deal. I went to all my appointments by myself, but always had the option to bring a support person if I wanted to – this is completely up to you.
Once I was on the list and waiting for “The Call” I realised that at least for me, the best way to cope with the uncertainty of it all was to try and forget about it. I reasoned that while I knew the call could come at any point, in anywhere from five minutes to five years, I had no control over which of these it was. In the meantime, I was 28, lucky enough to be otherwise healthy and acutely aware that the time elapsing while I waited wasn’t time I’d ever be able to get back. The best thing I could do for myself and my mental health was to make the most of it anyway. The two and a half years I waited for my transplant were still two and a half valuable years of my life.
Looking back at this stage I realise just how helpful it was that I had friends who’d already had kidney transplants and who could help give me some idea of what to expect. While we all have different circumstances, their support and knowledge made a big difference. I think every transplant team should encourage potential recipients to connect with other patients, if they haven’t already done this of their own accord.
Hurry up and wait!
Getting “The Call” is not usually like you see on TV. I think everybody reacts to this moment in a different way, which shows there isn’t a single “normal” response. Don’t worry if you don’t panic, and don’t worry if you do! I think I went onto autopilot to some extent, thinking “Ok so this is what I’ve been planning and hoping for, let’s just focus on getting to the hospital in time and worry about everything else later.” It’s funny how our brains can compartmentalize quite well when they need to. In my case it also helped that the coordinator who phoned me told me that while I should come to the hospital immediately, I didn’t need to panic and that there was still plenty of time. Most of the time whoever phones you should be able to give you some indication of what sort of timeframe you have. Some people are even asked to wait at home for a bit and come to the hospital for a set time, or to go to a dialysis session first if they’re due to have one.
By the time I got to the hospital it was about 3 am. I vividly remember being surprised by how laidback everything was and that while things were obviously happening at a reasonable speed, I spent a lot of time just sitting, waiting, answering questions and having blood tests. There was much more of a sense of “Hurry up and wait” than I expected! Kidney transplants are much more routine for healthcare staff than they are for potential recipients, that’s for sure! I have some thoughts about what was going through my mind at this point, but they’re going to be included in Part 2.
In my case, I was the only potential recipient who had the call that night. However, it’s often the case that more than one person gets called for each kidney. This is in order to have a “back-up” recipient in case the first person isn’t able to receive the transplant. They might have an infection or other problem that means they’re not currently fit to undergo the surgery, or the kidney might not be as good a match for them as originally thought. If this is the case, it will then be offered to the second person on the list. Understandably, getting a call but not a transplant can be a very disappointing and discouraging experience. If this happens to you you should certainly take advantage of any support offered, either by your renal unit or from external organisations (see list below).
Something else I did when I was at the hospital was give the staff on the ward the contact details of the person who was going to be phoning to check on me during and after surgery. This was particularly important because my family all live on the other side of the world, and by the time I went down to theatre it was the middle of the night NZ time. Having a close friend in the UK be responsible for receiving and relaying updates really helped because I knew nobody overseas would be left worrying about what was happening. According to my friend, the hospital was very accommodating and happy to do this.
What I brought, what I didn’t, what I wish I’d had.
I arrived at the hospital complete with a huge suitcase full of everything I needed…for a totally different event. I got the call while I was at a conference, so while I had all the essentials like toiletries and PJs, I also had a load of completely unnecessary stuff like a cocktail dress and heels! As tempted as I was to wear these home the day I was discharged, I ultimately decided jeans and a jumper was more sensible.
There are various recommended packing lists online, but here are a few specific things that I either had and was pleased I’d brought, or didn’t have and wished I’d been able to get my hands on…
- 2-metre long phone charger: Power outlets in hospital wards are often on the headboard of the bed, so normal length cables aren’t quite long enough.
- Handheld fan: Hospitals are often ridiculously hot (yes, even in winter), and for safety reasons patients aren’t usually allowed to open windows or bring in plug-in fans, so a handheld one is highly recommended (bring extra batteries too)!
- Hair ties: My hair is quite long, so I really appreciated being able to tie it back out of the way before surgery (in a style that could stay that way for several days), allowing it to avoid lines, tape and just generally having the chance to tangle itself into a hideous birds nest.
- Lipbalm/moisturiser: Not only are hospitals hot, they’re also very dry.
- Squash/cordial: After transplant you usually have to drink a lot of water to help your kidney to start to work. In my case this wasn’t too bad as I’d never been fluid restricted, but I imagine that if you have been it might be a bit of a challenge to adjust! Having something to put in it will help, so get your visitors to bring this when they come and see you.
- Nighties (not PJs): For the first 3 or 4 days post-transplant you will be attached to various lines, drips and drains, as well as a catheter. Even getting in and out of bed will probably leave you wishing you’d acquired an extra hand as well as an extra kidney, so navigating a pair of pyjama bottoms is probably best avoided. Stick to an oversize t-shirt or nightie; this also has the added benefit of not having a waistband to irritate any dressings or drain sites.
High waisted joggers, loose t-shirts: As much as I’ve just advised wearing a nightie, I found that after a couple of days I wanted to wear something other than PJs all the time. However when I looked in the mirror after my first proper shower I realised I distinctly resembled Winnie the Pooh after too much hunny. My stomach had puffed up at least two dress sizes, and although it went down again quite quickly, loose jogging bottoms and t-shirts were the most comfortable thing to wear while still trying to feel as if I looked vaguely human.
- Underwear, underwear and more underwear: This wasn’t something I needed urgently, but once I realised I was going to be in hospital for more than just a few days I asked my visitors to bring me some spare underwear, in a bigger size than what I normally wear for the same reasons listed above.
- Headphones/sleep mask: These weren’t things I had, but they’re definitely things I’d recommend. Hospital wards are loud, bright and busy (even in the middle of the night), so anything that can help you sleep is always a good idea.
- My own pillow: I really, REALLY wish I’d had this!
- Face wipes/toilet wipes: It’ll be a few days before you can shower, so these are useful in the meantime.
No doubt everyone you speak to will have their own suggestions for things you ought to bring with you, but I would add that while it’s definitely sensible to prepare, you don’t need to panic about making sure you have absolutely everything under the sun. All going well (temporary Covid-19 restrictions excluded) you’ll be able to have visitors afterwards, so they can bring you anything else that you need.
The longest ten days ever
I was discharged from hospital just over two weeks after my transplant, because I had something called delayed graft function or “a sleepy kidney”. This meant that although my body wasn’t rejecting my kidney, it wasn’t working, so I had to continue dialysis in the meantime. There are numerous reasons for this, but in my case it was caused by the length of time my kidney had been out of my donor before being transplanted into me (this is called ischemic time, for anybody who’s as much of a serial Googler as I am!). As it turns out, sleepy kidneys are really common and the almost all of them wake up eventually and do just fine longterm, but the ten day wait for mine to start was the longest ten days of my life, that’s for sure!
A “new normal”? What is that supposed to look like?
My short/mid-term recovery (I mean the first 6-9 months, maybe even up to a year) was variable. Especially in the first few weeks and months where I found that while I’d be fine one day, I’d be completely exhausted the next day and end up feeling like I was back at square one. This is completely normal and everybody recovers at their own pace, but I still struggled because I didn’t feel like I was getting better as quickly as I “should” be. I also had a bad reaction to one of my antirejection medications, MMF, which made me very nauseated and sick, so until that was resolved I felt like it limited what I could do a bit.
This is a somewhat sensitive topic, but this medication reaction also led to me losing quite a lot of weight. I started out on the heavy side of normal weight, but quickly found myself bordering on weighing too little. Over time, these side effects were resolved and I gained the weight back. And more. If I had to choose one thing I wish I’d done differently after my transplant, this would be it. While I’m absolutely happy that my medication no longer makes me sick every time I have to take it, I do wish I had monitored my weight a lot more closely, and not let myself gain as much as I did. I know that this is something that varies hugely between patients, and depends on an awful lot of factors outside of our control, but if I could do the first year post-transplant again, I’d have been much stricter with myself.
The rest of life
Now, almost five years down the line and fortunate enough not to have experienced any major complications or issues, my transplant just feels like part of my life. I still think about it on a daily basis, obviously, but to some extent this is probably because I both work and volunteer in a field where it’s highly relevant. I draw on my experiences in order to do my job, but I appreciate that this probably isn’t the case for most other people. My health and my “real life” overlap quite a lot! Many of the things I was worried about adjusting to now just seem like normal parts of my life. Humans are amazingly resilient and adaptable creatures, that’s for sure.
For this reason, I don’t have a lot of practical advice or things I wish I knew at this point, other than to say that I’m glad that I have always been a fairly confident, proactive patient, because I feel like it’s served me really well. Someone once told me “Treat your health like you are running a small business’ and I think this makes a lot of sense. Being in charge of your health, and knowing your body well enough to be aware of when something isn’t quite right will make a big difference to how you cope with life post-transplant.
Of course knowing your mind and understanding your mental health is important too, so that’s coming in Part II…
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.
Brilliant! You’ve taken me back to Saturday 11th January 2003. I received “the call” at 2.05am and told not to come into hospital until 7 or 8am (as if).
I too had a packed bag for another occasion, it was my friends birthday and he lived down south and I was going to visit him. I was in hospital for 3 weeks and totally get the earphones and mask! I remember completing my final dialysis (I was on CAPD).
Despite getting my call so early I didn’t have the transplant until 6.30pm and I totally understood your surprise at the relaxed nature of the brilliant staff. I remember first coming round and asking which side the kidney was on and being wheeled back to the ward and being welcomed by parents, sister, girlfriend (now wife)…even my aunt and uncle (we have a big Irish family). I think I worried for those first few hours as I kept waking up asking the poor nurse tending to me if I was going to be alright and at the same time thinking that I shouldn’t be hassling her so much.
I remember most patients or characters as they became to me. Being told that my new kidney needed a biopsy which petrified me…and then being told it was doing well. The copious blood tests (usually the first thing that woke me up in the morning). Measuring my ‘output’- I became way too obsessed with that. Returning home and feeling both delighted and scared that the apron strings of my hospital had been cut…until I went back every other day for bloods and check ups. The worry for the next few months. And here I am, 18 years later, still going strong! Long may it continue. Thank you once again for sharing your story.
Thank you so much for sharing your story and writing about your journey.. You write well, please keep doing it!
As a fellow transplant recipient, I can certainly relate to some of the things you mentioned. Like you, I too was blessed with the ultimate #giftoflife. My heart was transplanted on April 20, 2015, due to miracle of #organdonation, made possible through my ♻️#donorhero and the donor family.
I wish you well and hope to be connected.
Take care of yourself and your #giftoflife.
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Great story Holly, thanks for writing. We had similar experiences you can read about here. It is a series of posts and this is the first one:
Thanks Holly, for me, having had two caesarean sections has meant it took a long time to get. Benji Kidney settled it, he still sticks out. I wish I’d known about that.
I too, had a sleepy kidney, a really bad reaction to the morphine & was nauseous & had colic and diarrhoea for 9 days, then to MMF meanng I ended up back in with severe dehydration.
Some transplants will never work well, so my normal creatinine post tx is 240-260, again no one tells you this.
Would I go through it again, absolutely, so much better than dialysis
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