Last updated on 12th March 2017
I have written a series of blog posts about my recent experience of donating a kidney ... the last was "Kidney donation: the operation & first few postoperative days". My hope is that these posts will be useful for other would-be kidney donors & their families ... and some of the posts (for example this one) may also be of help for people facing surgery more generally. As Kortram & colleagues highlighted in their 2014 paper on "The need for a standardized informed consent procedure in live donor nephrectomy: a systematic review" - "Procedures vary greatly between centers, and transplant professionals vary in the information they disclose. Although research has demonstrated that donors often make their decision based on moral reasoning rather than balancing risks and benefits, providing them with accurate, uniform information remains crucial because donors report feeling misinformed about or unprepared for donation." The Edinburgh transplant centre did an excellent job with me (both technically & inter-personally), but I would have valued additionally reading a set of informative posts like this pre-operatively.
In an earlier post "Kidney donation: what are the risks?" I quoted extensively from Kortram's recent 2016 paper "Perioperative events and complications in minimally invasive live donor nephrectomy: a systematic review and meta-analysis" with its estimate of only 1 death in every 10,000 operations. To quote the latter paper more fully, the authors write "One hundred ninety articles were included in the systematic review, 41 in the meta-analysis. Conversion rate was 1.1%. Intraoperative complication rate was 2.3%, mainly bleeding (1.5%). Postoperative complications occurred in 7.3% of donors, including infectious complications (2.6%), of which mainly wound infection (1.6%) and bleeding (1.0%). Reported mortality rate was 0.01%. All minimally invasive techniques were comparable with regard to complication or conversion rate. Conclusions: The used techniques for minimally invasive live donor nephrectomy are safe and associated with low complication rates and minimal risk of mortality."
If you want to read this more recent overview of surgical complications in full text, it's expensive to buy from the journal's website whereas you can download it freely by joining ResearchGate. It's almost certainly the best current overview of the short term risks of kidney donation. Many of the research studies it's based on are of only modest quality, but it's interesting to see the authors' comment "If we would adhere to our national guideline, according to which only those complications with an incidence of greater than 1% or those with severe consequences have to be disclosed to patients undergoing any surgical procedure, we would only be obliged to mention intraoperative and postoperative bleeding, conversion, wound infection (and possibly overall infectious complications), and ileus. In addition, the possibility of a reintervention and mortality should be mentioned, regardless of their incidence. However, is this really enough to ensure that a potential living kidney donor is optimally prepared and able to make a well-informed decision? ... Prolonged pain, testicular complaints, neuropathies can be quite disconcerting to a donor who has no idea these adverse events are in fact quite “normal”." However the bottom line (which is probably all most would-be donors want to know) is Kortram et al's statement "Based on these results, we may state that all used techniques for minimally invasive live donor nephrectomy are safe and associated with low risks of complications and an even lower risk of mortality."
OK, so it's important to note that in the last blog post - "Kidney donation: the operation & first few postoperative days" - I had luckily (and with excellent clinical care) avoided the bigger postoperative boulders of what Kortram estimated is a 7.3% (about 1 in 14) chance that I would develop a significant postoperative complication involving, for example, infection or bleeding. The bumping & scraping I described, after going over the operation waterfall, all involved the smaller boulders & rocks of post-operative pain, gut symptoms, back soreness, fatigue & sleep difficulties. I recovered quickly - despite my age of 66, I was in good physical & psychological shape going into the operation and I needed very little postoperative pain relief. I got out of hospital after just two days (unusually quickly for the Edinburgh transplant unit). It makes sense to have loose clothing available, that won't press on one's abdomen, for the car trip home. It may help too to have a cushion one can position between seat belt and wound scars. Happily I was rapidly back to my familiar home environment, which was very welcome. Despite all this, the first five or so days postoperatively were pretty "grimy" for me. My abdomen was at times as tight as a drum & uncomfortable (from the air blown in during the operation, from my lack of gut function, and from inflammatory responses to the surgery). Post-surgery I woke with ten or so tubes, wires & other contraptions attached to me (PCA, drip, back-up venflon in the other arm, oxygen, finger pulse monitor, repeatedly self-inflating BP monitor, multiple ECG leads, breath monitor, catheter, and a close-by call button). I'm stuck on my back and continue to have difficulty lying on my side for the first week post-operatively. My back became stiff & sore (I'm thin and have little "natural padding"). This was actually more troublesome than the operation site pain ... and interfered with sleep (not helped as well on the second night by the sheer - and at times unnecessary - noisiness of the general renal ward).
What could be done to make all this a bit easier? It would have been interesting to have chewed gum from soon after the operation (I only started once I was home). Even if not using gum, it's worth having sweets to suck initially as one's throat may have been irritated by intubation during the surgery. Foam, gel or sheepskin cushioning under my back would have been worth trying. And it made sense, once home, to interrupt extended periods of lying awake at night. Chewing gum!? Fitzgerald & Ahmed - in their 2009 paper "Systematic review and meta-analysis of chewing-gum therapy in the reduction of postoperative paralytic ileus following gastrointestinal surgery" - commented "Chewing is a form of sham feeding reported to stimulate bowel motility". They noted an approximately 20% reduction in time to first flatus & first bowel motion. Admittedly this was for open, not laparoscopic, surgery - but my surgeon used a "hand-assisted" procedure that probably involved a good deal of bowel repositioning. The more recent 2016 Cochrane review - "Chewing gum for enhancing early recovery of bowel function after Caesarian section" - commented (as usual) on the need for better studies, but concluded "The available evidence suggests that gum chewing in the immediate postoperative period after a CS is a well tolerated intervention that enhances early recovery of bowel function". To add further back-up to the value of trying gum, remember that fatigue is one of the other five overlapping sets of symptoms I faced postoperatively. Fascinatingly this too may be helped - see, for example, the 2015 paper "Chewing gum: cognitive performance, mood, well-being, and associated physiology" and the same year's systematic review "Chewing and attention: a positive effect on sustained attention".
For me personally, the postoperative recovery seemed to fall approximately into five day chunks. The first five was the "grimy" trudge. Often quite nauseated, casting around to find fluids that didn't make me retch, my often drum-tight abdomen pulling me forward when I walked so it was easy to feel like an old man, only able to lie on my rather stiff back, immersed at times in waves of fatigue, sleeping at times when it might have been better to be awake & being awake in the middle of the night when it would have been better to be asleep. Not fun. Not awful, but not fun. It helped that I was at home. I put clothes and a warm blanket in another room, so rather than lie stiff & sore, unable to sleep in the middle of the night (with my dear wife sleeping soundly beside me), I could manoeuvre myself out of bed. Coping with episodes of back pain earlier in my life meant I was familiar with getting out of (and into) bed skilfully even when sore (see this 90 second video) ... and a similar technique worked effectively after this kidney surgery. In my work as a therapist, I regularly try to help people who struggle with insomnia. This improvement on counting sheep technique is worth trying, but the bottom line is really to interrupt prolonged periods lying awake in bed frustrated that one can't sleep - see this stimulus control handout. My first night at home (the third postop) I needed to get up three times; the next night twice, and the third night at home (the fifth postop) just once. Being up (and reading) gave my back relief, distracted me, and meant that when I felt ready to sleep again I was able to do so pretty straightforwardly. By night six postop I was able to sleep through without getting up, and by night seven I was blissfully able to lie on either side as well as on my back.
I have had episodes of quite bad back pain earlier in my life. It was helpful remembering - not just intellectually, but in my body - how I can be feeling sore & miserable but then gradually over a few days get better & better until it's hard to remember what I've just been through. And it's good to realise that, in a similar way, this experience of recovery from a kidney operation can also build knowledge & resilience for future potential challenges in my life. "What does not destroy me, makes me stronger". How I respond psychologically helps or hinders the recovery process. Remember Hannah Maple's research finding - "Stress predicts the trajectory of wound healing in living kidney donors as measured by high-resolution ultrasound". And the intriguing study showing that "Patients' expectations predict surgery outcomes: a meta-analysis", or the 2014 paper "Surgical resilience: A review of resilience biomarkers and surgical recovery", which reviewed the literature on the impact of resilience on surgical recovery and wound-healing, and commented "Qualitative analysis of recovery trajectories following stroke, spinal cord injury and amputation consistently find that “resilient” trajectories are associated with better outcomes than less resilient trajectories. These resilient trajectories were characterised by positive affect, good mood, less distress and active coping styles ... While there is a physiological dimension that cannot be discounted, evidence indicates the psychological aspects may in fact dominate post-surgery recovery."
Good to notice the small changes day by day ... taking one's first steps out of bed, getting one's first shower, becoming first able to lie on one's side, the first steps outdoors. Regularly challenging myself to get up and walk increasing numbers of times through the sitting room & hall. Good to remember self-compassion and the bus driver metaphor. The second postoperative five day chunk was very appreciably better. Day five I had my first (small) bowel movement. Interestingly eating & drinking a bit more easily for me unexpectedly preceded the bowel movement rather than followed it. On day six I wrote " … subtle and crucial, the sense of more energy, sunlight in one’s veins, happiness … helps one do a bit more, be a bit more productive, reach out a bit more … and then that builds the sunlight still more … but rest important too". Day seven I even went on a rather over-ambitious, slow 45 minute walk outside. Sarah Lundie, my charming & excellent transplant coordinator, had said to me on a number of occasions "You'll be 80% within a week". Mm ... what an encouraging thing to say, especially remembering the findings from "Patients' expectations predict surgery outcomes: a meta-analysis". Was it true for me? ... well partly yes, but to quite a large extent no. I think there's a parallel to recovery from jetlag where actually different organ systems & physiological functions recover at different rates. So by day seven I could sit at my desk and answer a couple of emails feeling pretty much 100% ... but normally I would be able to walk ten miles in the hills or work a ten hour day without finding it particularly difficult. No way was I ready to take on 80% of either of these challenges at day seven!
For more on the recovery process, see the next post "Kidney donation: walking back into the sunlight".