Last updated on 31st January 2018
I have written a series of blog posts about the "journey" of kidney transplantation, starting with "Kidney donation: why it's well worth considering" & "Kidney donation: what are the risks?" to the more recent "Kidney donation: the operation & first few postoperative days" & "Kidney donation: more on postoperative management". The posts are primarily for donors & their families ... but some aspects are relevant more broadly, for example for others going through different forms of surgery, or simply for others facing significant life challenges. On several occasions I have referred to the journey as being like a trip down a river (I paddled down the Spey for four days last autumn) or like a walk up in the mountains. If it's like a walk in the mountains, it seems to me that there are three peaks that need scaling.
The first peak is the transplant operation itself. In many ways the walk up this hill is the most "standard" bit of the journey. Donors pretty much all go through a very similar sequence of assessments & tests. It's a well described route that nearly all of us travel. The second peak is regaining full health after the operation. This section of the journey usually takes two to three months. And then thirdly, there's maintaining our health long term and not having our lives diminished in length or quality by only having one kidney.
I wrote five blog posts on climbing the first peak, and this is the third so far on scaling the second. The start of the walk up this second peak can be a bit daunting. As kidney donors we are likely to go into the operation fit and well ... and we come out as invalids. One tumbles down, still unconscious from the first mountain peak and wakes looking up groggily at the second peak emerging from the mists in the distance. Hopefully one hasn't "broken anything" in the tumble off the first peak - there are plenty of ways of being damaged at this stage, although - as Kortram's 2016 review & meta-analysis highlights - "The used techniques for minimally invasive live donor nephrectomy are safe and associated with low complication rates and minimal risk of mortality."
Waking gradually from the anaesthetic, covered in tubes & wires, but hopefully having avoided any significant complications ... it's seems short-sighted not to be grateful. But after a few days of step by step recovery ... sore, tired, aching, nauseous (or whatever one's personal mix of symptoms are) ... it's easy to feel a bit jaded! For me, recovery seemed to fit roughly into five day chunks. The first five days were the hardest. Trudging up through ash & rocks on the start of the journey to the "second peak", no sunlight, day & night sometimes merging. As I've said already, I was lucky. I needed very little pain relief, which probably meant I had less gut trouble. Of the five overlapping sets of symptoms that I was bothered by - post-surgical pain/gut symptoms/fatigue/back ache/sleep disturbance - gut & back were most nuisance for me. It might have been helpful to have started chewing gum while I was still in the hospital (see the last blog post for more on this). And I would have welcomed preparing a bit better for how I might lie on softer padding (foam, gel, sheepskin, etc) when stuck on my back.
I reckoned recovery was going to be particularly helped by trying to stay calm & upbeat, getting plenty of sleep (during "normal life" I can quite often short-change myself over sleep), eating progressively more, being open & connected to others' loving support, becoming step-by-step a bit more productive, and especially building fitness. Quite quickly I was able to graduate from walking 'laps' through hall & sitting room, to going for walks outside. I kept a record. Walks every day and increasing the distance every fourth day. By day twenty post-op, I was walking for an hour taking in a small local hill en route. I'm keeping to this each day, and building speed. I was able to drive after just three weeks and a little recklessly, I could cycle as well by this stage. It's tricky. As the early 2003 study ... "The living anonymous kidney donor: lunatic or saint?" ... and plenty of subsequent research has shown, altruism is a central driver for kidney donors. However response to risk is probably relevant too, see "Attitudes, psychology, and risk taking of potential live kidney donors: strangers, relatives, and the general public" . Altruistic (non directed) donors particularly tend to be less risk-averse than the general population. Excessive risk taking damages ourselves (and potentially others). Not enough risk taking limits our opportunities to learn & grow ... excessive timidity keeps our lives small. As usual, finding a good middle ground makes most sense.
From soon after getting home I began doing very simple yoga exercises. I have been careful about excessive stretching of the healing wounds. Mercandetti in an article on "Wound healing and repair" comments that "After the third week, the wound undergoes constant alterations, known as remodeling, which can last for years after the initial injury occurred. Collagen is degraded and deposited in an equilibrium-producing fashion, resulting in no change in the amount of collagen present in the wound. The collagen deposition in normal wound healing reaches a peak by the third week after the wound is created ... Maximal tensile strength of the wound is achieved by the 12th week, and the ultimate resultant scar has only 80% of the tensile strength of the original skin that it has replaced." He also highlights variability in wound healing rates, with better healing occuring when there is good nutrition ... and, as Hannah Maple has shown, psychological factors affect healing too.
"Full fitness" for me involves quite a lot of demands on my body. Typically I do two to three hours of yoga weekly and I also use weights (not for long, but I use them most days of the week). I have been careful with this regime ... aiming only to build gradually back to "normal levels" over a couple of months. A standard week for me preoperatively also involved a good deal of aerobic exercise ... badminton, free dance, cycling, an occasional run, spinning, walking. I love it and I'm a huge fan - if you click on "exercise" in this website's "tagcloud", you will bring up a list of over 50 entries. Standouts include "Would you like to be 14 years younger - it's largely a matter of choice!" and the somewhat stark "15 minutes of exercise daily reduces mortality by 14% - and each additional 15 minutes gives 4% additional mortality benefit" with its comment "So for happier mood, less disease risk, a better sex life, improved cognitive function, and a longer life - let's get exercising!". Physical fitness is quite possibly the single most important lifestyle factor people can focus on to improve the quantity and quality of their lives.
Talking preoperatively with my surgeon, John Terrace, I queried aiming to get back to my usual exercise mix by week 6 postoperatively. Remembering Mercandetti's comments that "Maximal tensile strength of the wound is achieved by the 12th week" ... even assuming I can cut that back to say the 9th or 10th week by good nutrition & other beneficial factors, full exercise by week 6 looks like I would be pushing my luck a bit. Badminton, for example, can involve some quite extreme jumping twists & changes of direction. John suggested holding off a full exercise regime until week 8. This seems sensible. By day 25, I began a little tentative jogging, and yoga stretches & use of weights can advance little by little too. Actually at about day 20, I found I had developed a hydrocoele around my left testicle. This is a hassle, but remember that Kortram's review commented that "Prolonged pain, testicular complaints, neuropathies can be quite disconcerting to a donor who has no idea these adverse events are in fact quite 'normal'." When hitting difficulties, "problem solve". Maybe I brought the hydrocoele on by pushing forward too fast, but I doubt it. Now it will probably be a question of "watch & wait". Maybe ... fingers crossed ... it will resolve on it's own. Maybe it will stay its current size and I can "manage" it, so it doesn't restrict me in any significant way. Maybe it will get worse and/or restrict me and I'll need to explore treatment options. Funny ... to an extent it takes "grandes cojones" to volunteer for this transplant operation, but I didn't think it would then loop back with the operation in turn producing "grandes cojones"!
And four weeks post-op, what's the progress report? Well a simple way to describe it would be as a couple of gripes, a couple of cautions, and plenty of celebrations. What are the gripes? I contacted the Edinburgh Transplant Unit eight months before the time I hoped to go through the operation. In my very first correspondence I raised the potential clashes with my full time job as a medical psychotherapist. I explained how very helpful it would be if it was possible (assuming tests showed I was a suitable donor) to schedule in a definite date for my operation. There was going to be considerable disruption of one-to-one time with clients and of teaching and other broader work commitments. I was told that this shouldn't be a problem ... yet it was. The provisional date for my operation was altered by eight days about six weeks before I thought I was going in for surgery. Humph ... this makes sense if I was in a bad way, desperately wanting an operation. I would have accepted the change and probably just been glad I was going to get treatment. That's not how it is with a healthy donor coming forward voluntarily to offer help. I don't think the Transplant Service seems able to respond appropriately to this somewhat different scenario. It messed up my care for my own patients. The second gripe is more tentative. I said that the immediate postoperative section of the "transplant river" felt to me like it was somewhat "veiled in mists". I think I would have really valued preoperatively reading something like the three postoperative blog posts I have just written. Hey ... I really hope that writing about this transplant journey makes it a little easier for other would-be donors.
And the two "cautions". Well one is the hydrocoele. It will become clearer over the next few weeks how much of a hassle this is. I'm lucky in so many ways that this is currently the only short-term setback I've experienced. The other "caution" is interesting and potentially more challenging long-term. In an earlier blog post "Kidney donation: what are the risks?", I said that I was more concerned about long-term risks post kidney donation, than about short to medium-term risks. If you're interested ... and if you're an actual or potential donor, you should be ... then it's worth re-reading my comments in the " ... what are the risks?" post. Current best evidence suggests that kidney donors somewhat increase their long-term risks of end-stage renal failure, cardiovascular mortality and all-cause mortality. These increases are small in absolute terms, and vary depending on a series of donor factors. For healthy older donors like me, increased risks are likely to be minimal. There is more concern for young donors with pre-existing risk factors (for example, like overweight). Kidney donors are largely motivated to act through compassion for others. A balancing compassion for ourselves highlights the need for good self-care long term. Mjoen & Holdaas's 2015 paper (available in free full text) - "Impact of living kidney donation on long-term renal and patient survival: an evolving paradigm" - is one of the better recent overviews of our current state of knowledge.
I also like the Yale initiative described in Kulkarni et al's 2016 publication "The long-term follow-up and support for living organ donors: a center-based initiative founded on developing a community of living donors" with its abstract reading "Transplant professionals recognize that the long-term follow-up of living organ donors is a priority, yet there has been no implemented solution to this problem. This critical gap is essential, because the transplant field is now emphasizing living donation as a means to address the organ shortage. We detail our living donor initiative ... aimed at providing ongoing engagement, wellness, clinical data accrual, laboratory follow-up, and social support for our living donors, in continuity. Our ultimate goal is to nurture the development of local living donor community networks by providing social engagement for current and past donors, which also serves as a platform for greater population education on the societal importance of living donation". Mm ... I will get annual check-ups through the NHS, and there are excellent societies, here in the UK, like "Give a Kidney" & the "National Kidney Federation" ... with similar ones in other countries. But it is interesting to try to clarify what optimal support would look like for past & future kidney donors, and what optimal societal engagement would involve. I suspect that improvements are very possible.
And what about the celebrations? In an earlier blog post "Kidney donation ... goals & journey", I explained that I had three main goals ... "primarily donating a healthy kidney & recovering well, but also allowing this challenging time to deepen my relationships with others, and too, being inquisitive & open to new experiences & learning." And these goals are very much being achieved. Altruistic donation here in the UK is anonymous, but the hints I have received are that the recipient of my kidney has been doing well. And I'm certainly doing well. I was out of hospital after a couple of days, beginning to feel more myself by day six, walking an hour daily & starting to drive by three weeks, and back at work after four. My target is to be back to my full standard exercise regime by eight weeks. The hydrocoele is a hiccup, but I'm confident it will be sorted. Oddly, one of the major benefits is feeling affirmed in myself. Camus said "Life is the sum of all your choices". I've talked about how the kidney donation felt the right thing for me to do. I'm not religious, but I do like the quote from the Hasidic rabbi Susya "When I get to heaven, God will not ask me 'Why were you not Moses?' He will ask 'Why were you not Susya? Why did you not become what only you could become?'" ... and the one from Gandhi "Happiness is when what you think, what you say, and what you do are in harmony." Following through on this kidney donation allows me to feel more present & at ease in my own skin. Not that I was particularly uneasy in my skin before ... more that if your values, for example, importantly include compassion and courage, then this involves stepping forward with these qualities again and again, in many different ways, day by day, month by month, year by year.
And "allowing this challenging time to deepen my relationships with others"? Definitely. I'm usually in the carer role. To experience needing cared for, is quite unusual for me. Particularly with my wife, children & friends ... it's been a deep joy, heart-moving, and a real lesson to be open to their love, kindness & support. And "being inquisitive & open to new experiences & learning"? "That which does not kill us makes us stronger" as Nietsche said. There's some truth in this. See, for example, "An upside to adversity?: moderate cumulative lifetime adversity is associated with resilient responses in the face of controlled stressors", "Stress resilience in early marriage: can practice make perfect?" & "From tribulations to appreciation: experiencing adversity in the past predicts greater savoring in the present".
And here's "Love is a place", a special poem by e. e. cummings, that I find myself thinking of:
love is a place
& through this place of
(with brightness of peace)
yes is a world
& in this world of
In a few weeks' time I plan to write again ... partly to consider the "third peak" ... how can we donors best maintain our health long-term and not have our lives diminished in length or quality by living with just one kidney?