The journey of a non-directed kidney donor
Firstly, why am I sharing my story?
Because I am convinced that the lack of non-directed/altruistic kidney donors in Australia is not due to a lack of willingness amongst the Australian public, but instead, complete lack of awareness. I am also willing to share because I know that just one non-directed kidney donation can result in multiple kidney transplants due to the kidney exchange program. In short, a non-directed donor kicks off a transplant chain which could result in over 20 transplants. I’m aware that in the United States one chain exceeded 100 transplants.
Click here to learn more about how kidney transplant chains work.
In Australia we have approximately 1,279 on the kidney transplant waiting list. A handful of non-directed kidney donations could make a very big difference to this number.
So, if my story helps in any way to make Australians aware of non-directed kidney donation and what it involves, I am surely willing.
1. How did you find out about non-directed kidney donation?
It was in 2019 when I first inquired with DonateLife regarding non-kidney donation. I cannot recall exactly how it all started - I hazard a guess, on seeing a television commercial about organ donation upon death, I felt to inform my 14-yr old daughter that I’m on the organ donor register and she subsequently asked if one could donate whilst alive. This likely prompted a Google search, though with no intent of considering being a live donor. Nevertheless, upon reading up on it I was inspired and consequently made an inquiry with DonateLife. It was some time after I inquired that I received a not so insignificant booklet about non-directed kidney donation in Australia; I’d all but forgotten about my inquiry when I received it.
Upon reading the booklet I determined that though I was interested in exploring live kidney donation further, due to my personal circumstances it was not something I could entertain at that time. I was a contracting I.T. Project Manager and was not confident that when the time came to take 2-6 weeks off (in case of any post-op complications) that my employer at the time would be supportive. I also didn’t think it was right to undertake such a process and operation being a single mother of a young teen at the time. Alas, I parked the idea of live kidney donation, but with every intent to revisit it at a later date.
Skip forward to early 2023 and my personal circumstances had changed significantly. I no longer had a teenager at home and I’d ceased IT contracting. I was also having a career break so had plenty of flexibility and time to attend the various medical appointments required to determine if my kidney was in “good nick”– what the medical staff term “the work-up”. So, I contacted DonateLife again and I was subsequently contacted by the Renal Unit at the Royal Adelaide Hospital (referred to as “RAH” from hereon in). After a few emails back and forth I was given instructions for the initial medicals required and on 22 July the journey began.
I met with my GP and same day had various tests done at the local pathology lab. I then (slightly anxiously/excitedly) awaited RAH’s advice on whether my body had made the grade to go through to the next round of tests. (NB: My GP was supportive of my desire to donate though did point out the risks of living with one kidney.)
Tests are ordered so that none are carried out unnecessarily i.e. if the results from the first round “do not make the grade” i.e. will prohibit donation, no further tests or assessments are carried out. Though I had never had any major health issues, I understood that the testing would be extensive and rigorous, and accordingly accepted the possibility of a medical issue being identified that I wasn’t previously aware of and that may prevent donation. I knew that I would be disappointed if so, but I kept reminding myself of the upside in this instance, that is, a fairly thorough medical investigation at no cost to myself.
2. Do you know anyone who’s suffered from a kidney-related medical condition and what did you know about kidney health when embarking on the donation process?
Prior to commencing the process I knew little about kidney health and the impacts of compromised kidney function despite my mother being diagnosed with multiple myeloma cancer 22 years ago and the secondary impact of this cancer is renal failure. Research suggests that only 30% of those diagnosed with multiple myeloma are “still kicking” 10 years post-diagnosis. Though my mother has well and truly surpassed 10 years since diagnosis, her health has and continues to suffer due to the impact of this cancer on her kidneys and the prognosis is that she will likely die from kidney failure.
All I really knew is that our kidneys suffer if you get dangerously dehydrated; I’d a friend who did a lot of Bikram (hot) yoga over a 4-week period and neglected to suitably increase her water intake - she ended up in hospital due to the stress on her kidneys. Prior to commencing the process I’d never heard of a nephrologist, nor a nephrectomy, of which the latter I was signing up for.
3. Was offering your kidney for donation a difficult decision to make?
No, not at all. Nevertheless, I very much appreciate that it would be for many given the various considerations, including surgical risks; increased health risks post-surgery due to living with one kidney (these are very low risks if the donor is committed to keeping in good health post-surgery); time required to complete “work-up”/medical investigations; time out required for surgery and recovery; and the impact on other household members and/or dependents. All of these are important considerations.
Surgical risks - I was talked through the surgical risks on two occasions and by two different surgeons. Though the surgical risks are very low, the risks are real and need to be considered. Of course, it wasn’t pleasant hearing about the risks, but I was not “put off” as a result of these discussions; but I don’t tend to be preoccupied with the “what-ifs” in life.
Post-surgery risks - I was cautioned about health conditions that put pressure on kidneys that I would need to be particularly aware of post surgery - obesity, diabetes and high blood pressure. I didn’t consider myself at high risk of these as I’ve always maintained a minimum level of fitness and lead a fairly healthy and active life i.e. I don’t run five times a week and nor am I a gym bunny, but I do a lot of functional exercise (via gardening, hiking and walking) and eat well.
Personal circumstances – the time required for the “work-up”, surgery and recovery was not difficult to accommodate as I commenced the process when I was doing casual work and after my teenage daughter had completed school and left home i.e. I didn’t have any dependents. However, I think it would be manageable with children in the home if the donor has sufficient adult support.
4. How did you find the medical testing?
The "work-up” involved various tests and screenings, including numerous rounds of blood tests, blood pressure monitoring, an ECG, a CT scan and a chest X-ray. I didn’t find any of it painful or particularly intrusive, but if I’d the choice, I’d have bowed out of the gluten intolerance test! For me, that was the worst of all of the tests. The drink you have to take had me feeling very bilious.
I didn’t find the work-up arduous, in fact I expected to have to attend more appointments than I did and for the tests to be more invasive. I think it’s important to add that historically, I have not been too brave with needles, though not sufficiently so that I wouldn’t donate blood or get the needed vaccinations required when travelling to developing countries. However, I’ve certainly asked for a nurse or my daughter to hold my hand on numerous occasions. My aversion to needles and to be honest, all things medical, somewhat worsened just under two years prior to starting the workup process due to a traumatic medical incident together with what ensued after the incident. I amputated one of my fingertips with the winch on my 4WD. Remedying the damage required three surgeries. I was certainly a bit traumatised by the need for multiple operations and consequently multiple re-starts to the healing process, and of course by the accident itself. My increased discomfort with needles and all things medical actually spurred me on in the “work-up” process; I was determined to “get over it”. Not once did I ask for someone to hold my hand and I attended every medical test and appointment on my own.
5. Did you get cold feet at any point?
No. In fact, I got more and more comfortable with my decision as the months went by and as I felt more informed on what I was taking on. I also became more impassioned about kidney donation as I learnt more about the significant need in Australia and New Zealand for kidney donors.
Nevertheless, I did have a nervous moment less than 10 days prior to surgery. I’d been following the story of a donor on the east coast who was recording and publicising his journey. He spoke about his surgery dressings and not knowing when to remove them. Naturally, I then envisaged removing my own dressings. It was not a good moment - it took me back to the numerous times my amputated fingertip was undressed and the associated trauma. It seems a tad dramatic to write of this now, but truly, there is a degree of psychological trauma that comes with any amputation, be it as minor as mine was. However, though I was certainly unnerved, it in no way had me reconsidering my decision. Instead, I contacted my GP and asked if at any time I needed the wounds looked at could they assist if I couldn’t face it myself. My GP was very obliging.
I didn’t discuss my nervousness regarding seeing the wounds with the RAH medical staff. I was prepared to go through the awfulness of mucking around with dressings, the potentiality of oozing wounds, visits to the GP and antibiotics in the event of infection and I mentally prepared for such eventuality. Nevertheless, to my absolute delight, I didn’t end up with any dressings at all. Instead, my fabulous surgeon used surgical glue to close up all four incisions. I don’t know if this was by choice of the surgeon, or all RAH surgeons use this method, but I know it isn’t the method applied by all across Australia.
6. Who did you discuss your decision with and what were their reactions?
The first two people I shared with looked at me with near derision, consequently, I determined it was best to be selective about whom I shared with to avoid being unduly influenced by others’ opinions. Admittedly, I was quite surprised at how strong the reactions were; I later realised that to many what I was embarking on was considered much more courageous, scary and generous than I thought it, which explained the strong reactions of others. I mentioned the negative reactions to my GP and she was very reassuring in her response – she told me all that mattered was that I was comfortable with my decision.
Nevertheless, as I got closer to the end of “work-up” I was less concerned about people’s reactions, as I had become much more convinced on my decision and unlikely to be moved on it. To the contrary, I started sharing quite openly and freely. I wanted to share because I’d become more knowledgeable about:
• the implications of compromised renal health and the significant lack of kidney donors in Australia;
• the impact that just one non-directed kidney donation can have on multiple kidney disease sufferers and their families, due to the Australian and New Zealand Paired Kidney Exchange (ANZKX) Program; and
• the significant lack of awareness about non-directed kidney donation amongst the Australian public.
When I started sharing more freely, and stopped caring about people’s judgments, I found reactions varied a lot. Some were supportive and encouraging, others asked about the risks involved, including the ability to live with one kidney, and I had a couple of friends think the decision was so extreme that they weren’t able to deal with it. I never sought to defend my decision; I appreciate many would not give the possibility a second of consideration. But what was most common amongst the reactions was the surprised that giving your kidney to a stranger was even a possibility in Australia.
Regarding living with one kidney, on my kidney donation journey, and much to my surprise, I found out from my nephrologist that 1/1000 are born with just the one kidney.
7. How did you prepare for the surgery physically?
When I commenced “work-up” I was both healthy and reasonably fit. I couldn’t run a half marathon in less than two hours but I could hike 20 km or run 7 km easily enough, albeit slowly. In the months leading up to surgery I made a concerted effort to exercise a little more than usual knowing my fitness level would greatly help post-surgery recovery (as I did prior to giving birth). I was particularly conscious of the fact that I would have little practical support, or at least not “on hand” post 5 days after surgery. The additional fitness certainly did aid my recovery post-surgery.
8. How did you prepare for the surgery both emotionally and psychologically?
In all honesty, I didn’t give daily thought to what I was committing to throughout “work-up” and this was deliberately so I appreciate that some people feel more comfortable the more informed they are with respect to medical procedures. I am the opposite and was similar with respect to childbirth. Knowing about the intricacies of a nephrectomy would only make me nervous. So, I didn’t bother myself with looking into surgery minutiae, the risks etc etc, though this was discussed with me upon confirmation that I was eligible to donate. Additionally, though I have not utilised many specialist medical services in Australia I have always had a reasonably high level of confidence in medical specialists services offered in Australia. I was also aware the Royal Adelaide Hospital (RAH) has a reputation as one of the best training hospitals in the southern hemisphere, if not the best, and too for substantive medical research. I did however read up on the three surgeons at RAH, well the little that was easily accessible. Nevertheless, perhaps halfway through “work up” I had a moment and wondered if I was being too casual about what I was venturing into, I think due to a comment by a friend regarding the enormity of the process I was going through – though that wasn’t how I felt at all. From then on, every six weeks or so I made a concerted effort to further my knowledge on what I was undertaking, including, the surgery, legalities with respect to donor and recipient privacy, why donors donate, responses of loved ones, and likely health outcome post-surgery. I also followed the journey of a donor on the east coast who was diarising and publicising every moment of his journey. To be honest, I didn’t know why it was such a big deal to the individual, however, I eventually realised the value in what he was doing as it is certainly the case that information on the process for non-directed kidney donors in Australia is currently quite limited. For me, that wasn’t of major concern, but for those who want to get into the minutiae, I can see why some may not come forward to donate. Initially I searched for stories of non-directed donors – alas, I could only find those of Americans and realised just how rare non-directed donation is in Australasia. At the time, some of the stories stunk a little bit too much of “heroism” to me, but I subsequently changed my view on that. I came to understand the great need for kidney donors and the lack of awareness in the general population, so good on those people who get the message out there and talk about their donation journey. But I was struggled to find information on what occurs immediately prior to the operation, the operation itself, post-op follow-up and potential surgery and post-op complications. After some hunting I found two stories that met the bill. One of the donors did have complications and had to go back into surgery within 48 hours, however, he didn’t detail what that complication was, disappointingly. Discussions with various medical staff (surgeons, nephrologist and renal transplant nurses) also aided my psychological and emotional preparation. Certainly, they could not be accused of coercion. One made it very clear to me that what I was doing was very unique and plainly told me “most people come to hospital because they are sick, you are going to arrive healthy and leave sick.” I really appreciated this, it was a great aid for my psychological preparation. Admittedly, when I got the call from RAH advising they’d identified the recipient of my kidney, there was a big shift for me psychologically. “Shit just got real.”
For me, knowing there was now an identified recipient and they’d been communicated with, there was no way I was going to pull out. I imagined the person and his/her loved ones would likely be celebrating that evening and I definitely felt emotional at that point.
9. Did you consider the possibility of your kidney being rejected by the recipient’s body?
Yes. I came to know about this watching the story of a donor in the United States. She had to see a psychologist as part of the “work-up” and this potentiality was discussed. I tried my best in imagining how I would feel if this eventuated and at the time, I felt it could definitely have quite a big impact on me emotionally and psychologically. Irrespective, I wasn’t deterred, instead I became very cognisant of this potentiality. I raised this with the Renal Transplant Coordinator and she advised rejection, at least initially, is not very common these days and went on to tell me of what the medical staff do to contra early rejection (it went over my head!). However, the body can reject the kidney some years later e.g. 5 years. So, though not ideal, if my kidney was to give someone a better quality of life for five years, and too their family, it was still worth it. In saying that, when I learnt more about the Kidney Exchange Program and that my donation would be the kick-starter for multiple transplants, I was less concerned about potential kidney rejection; my donation was going to enable numerous transplants.
On the morning of my operation I was advised three transplants were to take place that day and two others were scheduled, all of which were part of the kidney chain started due to my donation, not to boast, but to emphasise the impact of a single non-directed kidney donation. Whether or not your kidney donation is part of the Kidney Exchange Program, I do think the kidney rejection is a very important consideration when emotionally preparing.
10. What advice were you given by the RAH renal staff do you feel was of particular importance?
The General Surgeon at RAH was the first renal staff member I met with on my journey. I am very happy they didn’t pull any punches about the various surgical risks, but same time she was very personable and warm. Hearing about the surgical risks was a little jolting, however, I greatly appreciated having them outlined to me and in person. They also advised that when I wake up I will likely be in some pain and may question why I did it. For me, their directness was greatly appreciated as it meant I could psychologically prepare for worst case scenarios and the potential pain I could wake up with post-surgery. Being cautioned about the risks of living with one kidney by a Senior Consultant Nephrologist. Though I appreciated being informed of the risks I was not unsettled by the information. The Renal Transplant Coordinator asked if I was aware that donors can suffer a short period of depression post-surgery. At that point I was under the impression it was a bit like “baby blues” i.e. the few days of downness post childbirth, but I got the impression from the Coordinator it could be a bit more sustained than that. Various medical staff advised me that I could withdraw from the process at any time and right up to being wheeled into surgery, no questions asked.
11. Were you nervous? Did you do anything in particular the day/night before and/or the morning of?
No and no. I surprised myself, I thought I might get cold feet as about five days prior I had felt nervous. I actually slept really well and woke bright-eyed and bushytailed despite a short sleep as I had to wake at 5:30 a.m. (not typical for me). I had to get up to drink the horrible carbohydrate drink that aids the body post-surgery. Surely, I’d get nervous once admitted into hospital. No, still wasn’t nervous, in fact, I was eager to “get on with it”. I’d actually sent an email to the Renal Transplant Coordinator advising that I may get tearful once in the operating theatre but for this not to be mistaken as being unsure of my decision, but it was what I’d experienced previously in an operating theatre pre the anaesthetic kicking in. I’d also discussed this with the surgeon in the week prior. But this didn’t eventuate i.e. I wasn’t tearful, I think I did have a little nervous energy but it was excitement, oddly.
12. Hospital admission and that oh so narrow bed (operating table)
Admission was straightforward. Arrived at 7:00 a.m. and signed the necessary paperwork and sat down to wait with the other 70 odd people waiting for surgery that morning. Around 7:45 a.m. two renal nurses came by of whom one I’d met prior. She introduced her colleague who would be in theatre with me and advised I’d see her on the ward post operation. It was comforting to hear this. With the nurse was the box that was to house my kidney en route NSW via plane soon after its removal. It was just as I’d seen in a video by the Royal Melbourne Hospital – i.e. a polystyrene box, slipped into a green canvas bag with handles, ready for the courier. It was already addressed and marked “Urgent”. It was minutes later I was called for and farewelled my friends who were with me in the waiting area. Through to pre-op area wherein the anaesthetics team went through the necessary questions with me and checked my veins. Then surgeon came by and introduced himself; I’d only spoken with him on the phone, though he did offer to meet with me. I declined as I had already met, with the two other RAH renal surgeons in person and felt I was sufficiently informed. If I recall correctly, it was about 45 mins after going into pre-op that I was wheeled into the operating theatre. I recall my surprise at what I termed the operating bed. But in hindsight, I realised it was an operating table. I exclaimed about how small it was but of course that’s necessary for ease of access to one’s internal bits and pieces. I noted the many TV screens, as I referred to them as, and commented to the surgeon on his gumboots. I’d seen them under the curtains 15 mins prior as he left after introducing himself in my pre-op cubicle. The anaesthetist team explained gumboots are standard wear for surgeons as sometimes bodily fluids hit the floor … I’ll leave that to your imagination. In my email to the Renal Transport Coordinator cautioning not to mistake any emotion for “cold feet”, I also suggested that they “put me out” quickly and that I wouldn’t be wanting of an explanation regarding what would be taking place. I think the operating team go this message as I was out very quickly! I do remember a “huddle” of all the medical staff around me on the operating table – it was kinda funny to me, I wouldn’t have been surprised if one of them had laid hands on me! Little was said but it was clear who the leader was. I think just after the huddle disbanded I was introduced to a medical student and my permission was sought for her to watch the operation. In hindsight, I think that should have been sought prior to being wheeled in, in fact, days prior - my cynical side says that was deliberate i.e. intentional to allow the patient very little opportunity for consideration. When the huddle dispersed the surgeon returned to the very edge of one side the theatre and took a/his seat – I hoped he was praying for the good Lord to guide his hands well and before you knew it I was gone gone gone.
13. How did you feel waking up – both physically and emotionally?
Contrary to how I thought I may feel, and had been cautioned about by one of the surgeons i.e. I didn’t question my decision, despite the pain and discomfort I felt. I’d mentally prepared to wake up in terrible pain (that isn’t what the surgeons had warned of) but the strategy worked. The pain on waking was tolerable. I was woken by the post-op recovery nurses who needed to check I was okay post general anaesthetic and also check my “stab wounds”, how they were referred to by another nurse that evening. As the nurse lifted my surgical gown, I started to wince expecting to see numerous bandages and then await for them to reveal the damage. To much delight, there were nil bandages, and I could barely see the wounds below the glue that had been used to seal them up - it wasn’t at all a sight, thankfully. Oh my, I was so happy. No wounds to check, dressings to change, nor risk of infection I assumed. Thank you!
14. How was your time in hospital?
I was advised I’d be discharged around 48 hours post-surgery, all going well. I was discharged around 11am two days after admission. I wouldn’t have wanted to leave much earlier, as I didn’t want to manage the pain myself so soon after surgery i.e. risk waking in the night in tremendous pain. Getting in and out of bed was the most painful thing I could do post-surgery. In the 24 hours after surgery standing up straight was difficult. My surgeon knew this and advised I needed to stand up straight with shoulders back when I get up. I’m not sure why it was easier to be stooped over but I think the need to stand up straight was to do with opening up the lungs and lung capacity is impacted by general anaesthetic. I’d been given a breathing apparatus by the Renal Transplant Coordinator 10 days or so prior to surgery and was encouraged by my doctor to use it prior to surgery to maximise lung capacity. I was also to use it post-surgery. Deep breathing was certainly challenging in the days and weeks after surgery which meant anything requiring physical exertion, including talking, required more effort than usual. Walking – was easy once upright and I felt good from walking. Consequently, I was walking the hospital floors early afternoon the day after surgery and the morning later managed to get downstairs to get a coffee on my own at 6:15a.m. Whether or not the surgeon was happy for me to be discharged that morning, I was keen to go home. So, when the surgeons and the Renal Transplant Coordinator came to visit, I was packed ready to go. Fortunately, a good friend of mine from Sydney had come to be with me in the five days after surgery and I was very glad that she’d arrived in time to hear the advice from the medical staff pre discharge. I particularly wanted my friend to hear that the surgeon was not concerned regarding my lack of appetite – his main concern was my daily water intake, he recommended 2.4 litres, and use of the breathing apparatus to get my breathing back to normal.