Kidney Matters - Issue 14 - 2021

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10My pancreas transplants and meC O N T I N U E DBy Deborah DuvalI have never fully recovered from my first day at seniorschool. I didn’t start with everyone else because I wasin hospital learning how to inject water into an orange:the precursor to injecting insulin into myself. I was 11and I’d just been diagnosed with difficult to controltype 1 diabetes.When I did eventually join my classmates, theheadmaster announced to the whole school assemblyon my first morning, “There is now a diabetic child inthe school and if anyone sees her ‘acting strange’ theyare to report her to a teacher.” Their crash course onhow to identify a hypo (hypoglycaemic attack - wherethe blood glucose level is too low), but cannon-fodderfor the bully element, and I was regularly frog-marchedto the school nurse for nothing more medical than aminor disagreement in the playground.The die was cast. My fractious relationship withdiabetes did not improve over the course of the next50 years.Diabetic nephropathy is diagnosedBy my late 20s my husband and I, perplexed at ourapparent inability to make a baby, arranged for sometests to be carried out. I had never imagined a lifewithout a noisy brood of children filling our home withlittle wellington boots and terrible art. Protein wasidentified in my urine (proteinuria) and we were leftin no doubt by the consultant, that my body wouldnever carry a baby through to full term. Or if it did, mychild would not have its mother for very long. Chronickidney disease (CKD) was diagnosed and I wasadvised to reduce my working hours, plan for dialysisand prepare myself for what might be a long wait for akidney transplant.“It didn’t take me long to workout that there was little pointtransplanting a new kidney withouttackling the cause of my kidneyfailure. The diabetes had to go.“This news consumed us. What on earth was dialysis?How would we pay the mortgage without my income? Iwould never be a mother.It didn’t take me long to work out that there was littlepoint transplanting a new kidney in me without tacklingthe cause of my kidney failure. The diabetes had togo. I discovered that a new procedure, simultaneouspancreas and kidney (SPK) transplantation - where apancreas and a kidney from the same deceased donoris transplanted - was being trialled in this countryand early results looked promising. The UK was stillrecording single figures in terms of SPK recipients,but I hand-wrote a begging letter (this was 1989 – waybefore emails) to the three UK centres carrying out theprocedure. Professor Sells in Liverpool agreed to meetme. My own renal consultant, John Barnes at my hostunit at Royal Cornwall Hospitals (RCH) Treliske, madethe formal referral and my name was soon added to theLiverpool SPK waiting list.Pancreas number one is transplantedManaging a life on peritoneal dialysis with difficult tocontrol diabetes was not easy for me. I was extremelypoorly and became emaciated and malnourished inmy failing attempt to work out what diet to follow andhow to quench a ‘hyperglycaemic-thirst’ (where theblood has a very high blood-glucose content) on theone pint of fluid per day I was allowed on my renal fluidrestriction. I’m not stupid, but none of it made sense.I was tired all of the time, awful sores developed on myskin and I struggled to find the motivation to carry on.Fortunately, in October 1994 Professor Sells carriedout my longed-for SPK transplant.I will never forget waking-up in the intensive care unitafter my transplant. Still on a ventilator and surroundedby machinery, tubes, drains and my mum, I realisedthat I was smiling. For the very first time in 23 years Idid not have diabetes and I did not have kidney failure.I could blink and my eyes felt moist and not all gravellyas they had when my diabetes was out of control, andmy skin was turning normal skin-colour. I practisedfluttering my eyelashes at passers-by. It felt good.Someone had switched the sun on inside of me.I did have to return to dialysis just three years later,and was transplanted a second time in 1999 with anew kidney – which still functions well to this day. Buteight years after my SPK transplant my transplantedpancreas also failed and I returned to an insulinand carbohydrate-counting regime to control mydiabetes. The difficult nature of my diabetes startedto impact upon my kidney function again and myeGFR (estimated glomerular filtration rate) started todecline.On the hunt for a second chance at life withoutdiabetes, I was referred to the Oxford Churchill unit andProfessor Peter Friend. I was nervous. With every mile Idrove closer to the unit, I prayed. Hard. I had no plan B.I knew my age, weight, general good fitness level and,I suppose, the fact that I do not drink or smoke, wouldhold me in good stead in any medical assessment.www.kidneycareuk.orgPhotography by Carolyn at Images Photography www.imagescornwall.com
11Professor Friend talked about the potential pitfalls of whole-organ pancreas transplantation.The operation itself is high risk and the odds of a successful pancreas transplant for me werenot that great.I can’t pretend I was listening. I was resisting the urge to throw myself across the desk to signthe consent form. All I wanted was the chance to return to a life without diabetes.Pancreas number twoIn 2008, after a five-year wait, I received my second pancreas transplant. ProfessorFriend was the transplanting surgeon on duty that night. I was once again quitesick after my transplant, and it took me six weeks to become strong enough to gohome and a year to fully recover and return to full-time work. But the thing is, I didrecover and felt even better than I had after my first pancreas transplant. The onlyreminder of the operation now is a fine scar running the full length of my bodyfrom my breastbone to my pelvis.Physically, post-whole-organ pancreas transplant my eye-sight improved,my diabetic gastroparesis (gastro-intestinal diabetic nerve damagemaking it difficult – and noisy – to digest food) eased significantly andI was bouncing off the walls with an energy I had never experiencedpreviously in my adult life. My weight stabilised as my relationship withfood normalised. Food was no longer ‘medicalised’ and I could eatwhen I was hungry and not simply to balance insulin doses injected.Psychologically, to be free from a five-insulin-injections-a-day regime,and to know I would no longer spend my days and nights oscillatingbetween hypo- and hyperglycaemic attacks, liberated me. Moreover, Iwas no longer embarrassed to be me – all broken. I was mended.The treatment of type 1 diabetes has improved immeasurably over theyears, and whilst I have had to deal with the loss of this second pancreasafter 12 amazing years with a normal and steady blood glucose level of4.5 mmol/L (so, perfect), I remain pragmatic. In total, I have had 21 years“I I have had 21 years completely freefrom diabetes, thanks to my two pancreastransplants, the amazing generosity of threefamilies and the expertise and care of twotransplanting teams.“completely free from diabetes thanks to my two pancreas transplants,the amazing generosity of three families and the expertise and care oftwo transplanting teams.I doubt I would be here at all, let alone working full-time and enjoyinglife as I most certainly do, without my experience of pancreastransplantation. My best and most precious gifts, ever. How lucky am I.If you would like more informationon whole-organ pancreas, islet-celland SPK transplantation go towww.kidneycareuk.org/learn-moreLEARN MOREIssue 14 | Autumn 2021
Page 1 and 2: Autumn 2021Issue 14Aari, ourthree-y
Page 3 and 4: 3Welcome toKidney MattersHi all,As
Page 5 and 6: 5small grants to pay for bills or f
Page 7 and 8: 7Projects such as the expert patien
Page 9: 9Why are so few pancreas transplant
Page 13 and 14: 13Living donors tend to play down t
Page 15 and 16: LEARN MORE15Figure 1: Kidney exchan
Page 17 and 18: 17Aari’s legacy“Aari was a mira
Page 19 and 20: September 10 th - 19 th 2021 via Zo
Page 21 and 22: Cooking in the kidney kitchen with
Page 23 and 24: Superhero Teddy -toddler fundraiser
Page 25 and 26: 25Skin cancer risk is greatest in p
Page 27 and 28: “Skin cancer is themost common ty
Page 29 and 30: 29Organ Donation Week 2021and ‘Th
Page 31 and 32: 31“Seeing patients brought a newu
Page 33 and 34: 33Watch out forOrgan Donation Week2
Page 35 and 36: 35But if I don’t allow myself the
Page 37 and 38: 37side effects, but none of these e
Page 39 and 40: Sign up foryour freecopyWhether you

Kidney Matters - Issue 14 - 2021

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