Hi, I’ve been inspired by another to start, and keep, a diary of my experience as a live kidney donor. At this stage, I have given nothing to anybody, and I may not be a suitable compatibility match for my friend who needs a kidney transplant urgently. I am a card carrying organ donor, but that’s for when I die and if there’s any part of me that of use to somebody. But this is different, this adventure is all about providing my spare kidney while I’m still alive.
A couple of weeks ago, I announced to my family that I am offering my kidney to my friend. Apart from the surprise that my friend was in such desperate need, the general response was one of concerned support. There was support for the idea, but worry that I might be putting myself in a risky place because: any surgery is risky; it’s a big operation; what if I have kidney trouble myself later on; how would I feel if someone close to me needed a kidney and I’d already used up mine; what if the kidney was rejected and my friend had a hard time or dies anyway … how would I feel? Basically, my feeling is that life is a risk anyway, and if you can help someone, then you should.
The first step was to contact the Donor Coordinator. This was a challenge as nobody seemed to be able to connect me with the right people. After talking to a speech pathologist for 5 minutes trying to explain what I needed, I was finally directed to someone who knew something. I was given a form which asked a host of questions about by general health and medical history. I’m pretty healthy, am a non-smoker and drinker, so this was easy to fill out. It needed countersigning and the results of some tests from my GP, so I made an appointment as soon as I could … a few days out. My GP said “I can’t run any of these tests” so I was stuck again.
I managed to speak to the Renal Transplant Donor Coordinator who was located at a different hospital across town. She said “wrong form” very nicely, asked me a bunch of questions, including why I would want to to this, and what was my relationship with the recipient. Most promisingly, she thought that there was no obvious reason to prevent me from donating. A new form came the next day with some questions for my GP so I rebooked with her and completed and dispatched my form, which asked the same things as the first but was much easier to follow and was supported by some reading material.
The next day was my return visit to the GP. She was really nice and positive and gave me booking requests for about 20 tests: Blood type, STD screen, TB screen, Glucose tolerance screen, Urine test, Diabetes blood screen, general full blood profile, faeces test over three days, mammogram, chest x-ray, ECG, Renal ultrasound, … and a few more specialist ones that I’ve forgotten the names of. I thought of them as the “wet” tests, and the “electro” tests. The scope and number of the tests freaked the blood collector (phlebotomist). I think my first serious collection event involved filling 14 vials. It was probably nuts to have my Glucose Tolerance Test on the same day. Pumping my body with the sickly glucose after fasting and while syphoning out blood across a 3 hour period left me feeling weak and actually gave me some stomach pains and a gastro response later in the day.
Today I submitted my huge bottle of wee that I was asked to collect over 24 hours. This exercise was a bit of an adventure. They gave me a little lady funnel bit to help with directing it all into the bottle. It was amazing to pee standing up! So convenient! A bit gross to be collecting all my excretions and keeping them safe and sort of secret, well out of the way from the rest of the family. Ew.
Tomorrow I start my electro tests.
In the meantime, I have been devouring online stories, advice, and information; it seems that it’s not too hard to be compatible these days as they have protocols to adjust for mismatched blood and tissue types; the necessary thing is the general health of the donor. I hope no nasty health surprises are turned up for my friend’s sake and my own. It is possible, too, that I’m one of the few who cannot donate because of something weird with my kidney function, the scar tissue in my abdomen from previous surgeries, or some other unexpected medical reason. I should know in a couple of weeks.
I thought it might be helpful to keep this diary even if it turns out that I cannot donate to my friend. The journey itself might encourage others to consider donation. Even if they say no to me, there has already been an emotional investment in the opportunity to help. I think it would be useful for readers to join me on that journey too.
Live Kidney Donor Diary #2
Today was an easy day, a quick chest x-ray, and an ECG. It will be a week until these screening tests are complete. Next week I have a renal function ultrasound, and a mammogram (I hate mammograms). The ultrasound is a bit of a thing, I have to fast, empty my bladder, and then drink a litre of water in half an hour before the ultrasound. I hope I don’t wet myself before the test is over. There’s not a lot of time between impulse and action these days when it comes to urination.
I asked my husband for his thoughts about this exercise, and he made it clear that he thinks it’s an unacceptable risk. Well, I asked … I know he’ll be fully supportive, but I will need to ask some pretty pointed questions when I get the chance to make sure that I’m clear on the risks to my future health. I’ve read as much as possible and know that no surgery is risk-free. I’m comfortable with what I’m contemplating and hope I fit the bill as the best possible candidate to help my friend. It’s not just one friend I’d be helping. His wife, his children, the extended family … are all my friends. If I can help, I will.
Live Kidney Donor Diary #3
This isn’t the next day from the last entry. It’s actually been about 10 days. I have finished all the tests and received a 16-page (double-sided) data set. For every reported score, there was a reference given for the expected normal range. I’m typical for everything, a slight depletion of vitamin D, that’s all. So, I felt somewhat relieved that nothing sinister was uncovered from such an extensive range of tests. Woohoo!
I noticed a little note at the end of the left kidney ultrasound report. It said that they found a mid-line scar and a renal cyst of just over 2 cm in diameter. I fretted for 24 hours and immersed myself in Doctor Google offerings and any medical journal article I could find attending to kidney cysts, relevance for renal health, and implications for kidney donation. I have come to believe from this search that cysts are normal (50% of people 50 years+ have them), that renal function can still be normal (as mine is reported to be), and that very many successful donations of kidneys with cysts have been performed over many years. The provisos are that the donor kidney should not be polycystic. Phew, I show no sign of a polycystic condition. There was a suggestion that after harvest of the kidney, and before transplant, a cyst might be excised. But this seems not to be universal or recommended practice. I guess it depends on the size of the cyst. So this may well be a non-problem.
I have discovered that I’m blood type B neg, which, until recently, may have been a problem as it is a relatively rare blood type (2% of the general population) and was historically not advised for most kidney pairings. However, my initial concern about the need to closely match our blood types has been addressed by the new plasmapheresis practices that seem to eliminate the need for exact matching. Phew,
In my search for information on blood type matching, I fell onto some articles that reported on the impact of gender matching in the process. In some reports, a female donor to a male recipient is not quite as successful as other matches (female to female, male to male, female to male, or male to a female). So this is a new issue for the exercise. The suggestion in some reports is for paired transplant arrangements. This means I could give my kidney to a different recipient freeing up their other donor to give to my friend. If I give to a female with a potential male donor identified, then that male donor can give to my friend, reducing the likelihood of complications. It does increase the coordination’s complexity and may delay the surgery’s scheduling. But, not all reports have data indicating significant differences in a female kidney for a male recipient. Another question I’ll need to ask.
I’m a bit anxious about this whole process. I want certainty, and I don’t feel well informed about my situation. I’ve emailed off the test results … I watch and wait.
Live Kidney Donor Diary #4
Waiting, waiting, waiting … for news about my health results, my compatibility for donation, and projected timelines for the next steps. I’ve just had a mammogram, and I think that finishes the latest round of tests. The mammogram technician told me to expect results from those tests in about 4 weeks. Wow! Such a long time. I’m inclined to ring the transplant coordinator to see what can be done to improve the decision and booking processes. But I’m not that sort of person … I will wait.
When I started this process, I thought I might experience anxiety, fear, and a modicum of physical discomfort, but I never expected frustration with bureaucratic processes and decision-making timelines. I worry that when all the tests have been done and analysed, the earliest ones might be proclaimed out of date and need redoing. I guess I have to trust in the process; they know what they are doing. It’s surely worse for my friend, the potential recipient; the waiting must be excruciatingly painful.
Live Kidney Donor Diary #5
So the process has come to a screaming halt, after almost 50 separate tests and procedures. My kidney … compatible. My blood and tissue type … compatible. My kidney function … perfect. I am a healthy and willing donor, but it turns out that the very last procedure to check the morphology of my kidney before surgery showed that it couldn’t be transplanted because I have three feeder arteries to each kidney instead of one, and the connections are so short that they would be difficult to stitch into place. The decision was made because my functioning kidney would die in a new body, any new body, as the three arterial connectors couldn’t be serviced. So, at the end of it all, my donation cannot be accepted. I’m very sad. I thought I was going to be a help, but in the end my journey has simply been a distraction. I hope and pray that another donor can be found. I hope that my diary has provided some insight to the complexities, challenges and risks inherent in the renal transplant process…. and so ends my contribution to the story, sadly.
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