One family’s transplant journey in extraordinary times
David Prosser, our vice chair of trustees, describes his family’s run up to his second kidney transplant as: “like pushing a wheelbarrow full of bricks uphill with butter on our boots.”
A month post-surgery, however, he is recovering well and proud of his whole family. Two daughters, Rachel and Lucy, were both a close donor match for him and solved the dilemma of who would step forward by flipping a coin.
Lucy ‘won’ and, delighted at seeing her dad recovering so well, has rallied the family to get involved in the #850Challenge to raise money for research. The whole family is covering 850 miles each in 2021 with a mixture of walking, running, cycling and rowing.
The challenge itself is to walk 8,500 steps a day, cover 850 miles in a year, or raise £85 to help fund research to make life better for kidney patients.
David tells his story on his second transplant journey:
My consultant showed me a graph of my creatinine (rubbish in the blood stream) before and after my transplant. He joked that it was so good, I should have it put on a t-shirt. My daughter, Lucy, took him seriously. Well, she was the donor.
As if donating a kidney to me wasn’t enough, within four weeks of surgery, Lucy decided she was so grateful for how well I am looking, she ought to do the 850 miles Challenge in support of Kidney Research UK. She signed up in January 2021, and had no difficulty rounding up the rest of the family to do it with her. https://www.justgiving.com/fundraising/Prosser850.
After all, if Lucy could do it after what she’d been through, how could they refuse? So that’s the punchline: the story has a happy ending. But life is never that simple, as anyone who’s ever had a brush with kidney disease will tell you.
I had known I’d need a second kidney transplant for over a year before it went ahead on 9 December, 2020.
As an ‘extremely vulnerable’ person, Mr Hancock wrote to me last March and I’ve shielded ever since. We could only watch with dismay as kidney transplants at my hospital were suspended during the first wave of the pandemic.
Covid-19 added an extra hazard to my family’s efforts to progress their initiative to donate a kidney to me. Nevertheless, in the spring, they were all considered as potential donors for me.
In the meantime, I had a shedload of tests to ensure I was well enough to undergo the rigours of surgery. I needed to go through this process anyway to meet the criteria for the national list of kidney patients eligible for transplant. Fortunately, I was. What followed was extraordinary.
Almost 34 years earlier, my sister Sylvia donated a kidney to me, and I regretted not having written an account. So, I decided to write about my experiences this time as they happened.
28 July 2020
The transplant surgeon faces an ageing desktop computer and keyboard logged into the hospital’s systems. His attention flits between the screen and me.
Introduces himself, talking quickly as clever people sometimes do. His name eludes me. Our face masks render voices slightly fuzzy.
“What caused your kidney disease?” Standard opener to elicit whether a patient knows what day it is.
He visits every nook of my medical journey. “At what age did you have the tonsillectomy?”
The diligence reassures, though feels slightly excessive. It dawns on me that surgeons have their batting averages published. Perhaps that partly accounts for his thoroughness. Who cares? If publicity for theatre performance reinforces professionalism, good. He won’t operate unless he’s convinced he’ll be chalking me up as a success.
“Slight thickening of the ileum; colonoscopy’s needed.”
“Had one, summer 2019.” Discretion prevents me from saying that he wouldn’t know about the ileum, unless I’d had a colonoscopy. Never rile a person about to cut you up.
“You have a donor lined up. Prioritised for pre-emptive transplant.”
“One of my daughters.”
He looks up her hospital records, “All seems in order.” No enquiry on how I feel about the ethics. Unusual, I think, but perhaps not his bag. He’s more of a precision mechanic. Nearer to plumber than psychiatrist. As long as he’s a dab hand with a scalpel . . .
He talks me through precisely what will happen.
“Now. Surgery risks.”
Fifteen minutes later I want to jump out of the window. The individual hazards sound miniscule, but there are so many that I now feel I’m about to take a stroll down sniper alley blindfolded.
I interpret his question as my successful endurance: I’ve passed muster as a transplant candidate.
“When can we expect to undergo surgery?”
“Late August, early September.”
13 August 2020
I’m not completely comfortable receiving a kidney from my daughter. The sacrifice is the wrong way around: a “child-changed father,” my Lear to her Cordelia. The reference isn’t exact: a happier ending in prospect, hopefully. But my family love me and they say they want me around a while longer. If surgery is to go ahead, my overriding concern is the donor’s continued good health: no ill effects.
After that, our family concern is to get this done as quickly as possible for two health reasons: to avoid interim dialysis for me and to avoid a second wave of Covid-19 in case transplants are paused again.
Time is of the essence.
In the first week of June, my daughters Rachel and Lucy were independently told by the hospital that they are medically identically placed to donate a kidney to me. This conclusion was drawn from tissue typing tests. The decision as to who would actually go forward to more intrusive tests and scans to ensure fitness for surgery belonged to Rachel and Lucy, the nurse said, adding: “You might as well flip a coin to decide.”
The imposition of the responsibility for making this choice felt as though a terrible burden was being placed upon them.
They both wanted to go forward. They talked themselves to a standstill. Like a couple of prize-fighters slugging it out. Perhaps, more accurately, loving it out. Over two weeks passed. Tears and laughter. Lots of listening. It was hard for the rest of us to witness. On Father’s Day, 2020, at the family home, but out of my sight, they tossed a coin. Lucy is to go forward.
Lucy receives a telephone call. It’s a transplant nurse. Our case has been debated at the MDT (multidisciplinary team meeting) today. Lucy wanders further into the garden to take the call.
We all go about our business, trying to think of anything but the call and failing. After 10 minutes, Lucy hasn’t returned. I look out into the garden and Lucy is seated in the shade on the bleached mahogany bench encircling the base of the Indian Bean Tree, on the phone, sobbing.
A minor abnormality was found while testing Lucy. Ordinarily, nobody would have worried. Nevertheless, as a precaution, the hospital wanted to switch to Rachel as the donor. Lucy was devastated, and the rest of us were in shock. After further tests and much dialogue, it is eventually concluded with everyone’s agreement, that Lucy could proceed as the donor after all. All told, this hiccup cost us a month.
30 October 2020
I’m ushered into the consulting room by the consultant nephrologist bang on at 10am. He’s accompanied by a familiar transplant nurse. I feel like a regular now. They are considerate and charming as usual. It all goes off as per, and we’re scuttling back home late morning. I’m prescribed blood pressure tablets for the first time ever. It comes as a blow. Still, all in all, the prospects for December surgery look great.
Back home in the early afternoon, and the clinic nurse from this morning calls me.
“Nurse G here, I’ve got your blood test results.”
“I’m afraid it’s bad news. Your creatinine is 900, and urea 39."
This is tiger territory. Years ago, post-transplant, my levels were 190 and 20 respectively. A healthy kidney keeps creatine at around 90. Most of 2020, I’ve been hovering at around 300 and 30 respectively.
“We tried so hard to give you a pre-emptive transplant.”
I thought she was about to cry.
“Please come in for dialysis tomorrow. I’m so sorry.”
Perversely, I end up consoling her.
“Don’t worry, you did what you could. It is what it is.”
1 November 2020
I shuffle to the bathroom. Looking back at me from the lighted shaving mirror, I see a bloated moon face, and narrowing eyes. It’s not me, yet it is me now.
Paradoxically, I have lost five pounds overnight: this drop can only be the result of dialysis. So, my body fluids have been both reduced and redistributed.
Looking down, my calves, ankles and feet have swollen further, rendering movement sluggish. Whilst there is a tinge of dismay and embarrassment, my main emotion is relief that dialysis can reverse the inexorable rise in my bodyweight, despite my ardent endeavours to control it by exercising and at the kitchen table. It looks as though I can eat low potassium foods with relative impunity. This assumption also proves to be false.
3 November 2020
My nephrologist visits me as promised. He confirms that dialysis is no bar to the planned surgery. In response to my question, in the event of a significant second Covid-19 spike, he says that there would be “massive resistance” from the hospital to any instruction to pause transplants.
The hospital managers have thought through very carefully how to segregate Covid-19 patients from others, and to test those others for infection twice a week. All staff and dialysis patients are also tested twice a week. I’m slightly sceptical about whether “massive resistance” will win the day with political masters: I’m fortunate to be in a jewel of the NHS crown with world class renown for research. Too significant to escape Mr Hancock’s attention.
20 November 2020
I nod off in the car after dialysis. Back at home, my feet feel leaden and I’m lethargic. Then a magical antidote appears from the ether, courtesy of Rachel. A box of six giant sugar-sprinkled Crosstown Doughnuts, in dialysis friendly flavours, is delivered to our front door.
Made the same day, they are magnificent; without parallel. I’m photographed proudly holding the boxful, grinning as though the black smudge on my forehead (sustained by colliding with a door frame at night) is perfectly normal. Seconds later, there’s an unseemly scramble as Kate, Sarah and I take one each. Mmmm, delicious. So fresh and light. Then, spontaneously and without pausing, we grab another and within twelve minutes of opening it, disgracefully, the box is empty. The human animal unleashed. Who cares, I’m rejuvenated.
26 November 2020
My platelets reading is 34. This reading has dived again after a similar episode a month or two back. A healthy person has a level of 160. Blood platelets enable wounds to clot. Clotting is quite a boon for people undergoing major surgery. Specifically, surgeons won’t operate with platelets at my current level because of the risk of bleeding to death. The news isn’t what I want to hear, but objectively, it’s reassuring. I’ve been experiencing nose bleeds in the past couple of days: this all makes sense now.
“What is the platelets level above which surgeons will get comfortable?”
“It depends on all of the facts and circumstances. At 100, they don’t bat an eyelid. From 80-90, most are ok. At 50, they all get nervous. But 34 is clearly below the line.”
There were more chicanes between the platelets problem right up to the day of the transplant. Lucy was out of hospital three days after surgery, and I followed her in possession of my new (her) kidney two days later.
Our close family had been isolating and we sat down to Christmas dinner together.
All being there, with successful surgery behind us, was not something we had dared to dream about, given the shenanigans and hoops we’d all negotiated
Reflecting on the experience, I am grateful to come from a tight knit family. I know that many are not so fortunate. The only thing that really matters is love.
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