I’ve thought long and hard about sharing this story, about keeping it private or about telling others. To protect myself and others I will however change the names of the people involved.
Bob (that’s not his real name) is in his 40’s. He’s married to Cindy ( no, you guessed it , not her real name) and has a kid, a little boy, Fred (that’s not his real name either)
When Bob was 18, he was really ill, with a kidney disease called IGA nephropathy. What’s that? I hear you ask.
Well, lets keep it simple . Its a disease where typically a sore throat or other streptococcus infection goes wrong. The body produces antibodies to fight the bacteria and the antibodies stick in the kidneys. No-one knows why they do, but they do. Or did for Bob.
So what? You say. Bob had a sore throat. No big deal.
Well, me too. but Bob tells me it was a big deal. He urinated blood colour urine (never a nice thing, he tells me) and spent 3 months in hospital, losing weight and worrying about if he was going to live. (and worrying his family in the process too) Indeed, in the ward on the left hand side and the right hand side of his bed , the patients (who had the same as he) died in the night. Bob got scared; he was 18. He as supposed to be out partying with his friends, but instead, he was stuck in a hospital bed.
Bob had A levels to do, they are the exams to take at the end of school in the UK, you take them when your 18. Bob couldn’t take the A levels that year. He had to go back to school, and do another year. But he didn’t know that yet.
Bob spent a long time in hospital, measuring carefully what he drank, and what he urinated, measuring the weight he lost and trying to recover.
Finally, Bob came out of hospital. it was a few days after his 19th birthday. He’d been in hospital for over 3 months, but he was alive. The kidney function was back, but long term, things would be different for Bob. Bob didn’t know all that though, not yet.
Bob was a big fan of rugby, playing and working out. but the doctors told him that he’d have to stop contact sports. No more rugby for Bob. Bob took his boots back to the club, and told the coach he couldn’t play anymore. The coach understood, Bob had been ill, and looked like a skeleton. But he took the boots anyway. Wished Bob well.
Bob went back to school. But all his friends had sat their exams, and Bob was in a sea of faces he didn’t know. Bob worked hard, (or fairly hard anyway) and passed his A levels , and went to University. Bob went to Polytechnic in Cambridge. School was different, people pitied Bob, or avoided him.
Bob spent 3 years studying , and partying , and learning. but in the third year, Bob was ill again, This time Bob missed his final exams due to illness; but Bob bounced back, coming back to University to finish the fourth year, once again in a sea of faces he didn’t know. Again, people pitied Bob, or avoided him.
Bob went to teacher training college, and became a teacher. Off he went to work after a year of training. Bob was a teacher.
Years ticked by. Bob got married , and bought a house, had kids; all the stuff you do.
Bob saw the doctor every so often , nothing special, check ups with the GP.
Bob changed job, changed country. In the new country, the new Doctors took one look at Bob and decided a treatment was probably a good idea. The GP in the UK had given him tablets. Now he’d get more, and tests to see what was happening. Bob had to urinate in a bottle for 24 hours. Have blood tests. Bob saw the doctors every 6 months for 10 years, and Bob’s kidney function slowly declined. And there was nothing he could do, except take the tablets, and keep fit. Bob watched his diet, kept fairly fit.
Bob’s health got steadily worse. Lack of EPO (a hormone produced by the kidneys which helps produce red blood cells and which is used by dopers in athletics) production from the kidneys led to anemia , and uric acid build up lead to painful gout. Bob’s lack of EPO led to nerve problems, trembling. Because Bob was so ill, he had a influenza vaccine shot, to prevent any problems. But Bob got influenza anyway, and after, he had Guillain–Barré syndrome.( a neurological disorder) And Bob was really ill now.
Bob spent more time in hospital, losing mobility and muscle mass. His wife was worried , his family was too. His colleagues too.
Bob came out of hospital. Now Bob would need dialysis and a kidney transplant. But he wasn’t ill enough to go on the waiting list.Waiting to go on the waiting list, Bob had gout again, and couldn’t walk. Bob had to go back to work anyway, He needed the money for the house he’d bought. So hunched up and doubled in pain, walking with a cane, Bob went to work. The kids in the school where Bob worked were worried now, and whispers went round the school.
Bob’s toes and knees and elbows and shoulders all swelled up with gout. Bob now had jackal halitosis , as the urea in Bob’s blood increased. Bob had cardiac problems, tachycardia due to the urea.
Bob became weaker and weaker, waking up with the metal taste in the mouth. Bob couldn’t sleep, the gout would wake him up; and every night Bob would get up to go to the toilet, because the kidney’s worked in the night. Bob’s skin got bad, and he started to itch.
Bob couldn’t go to the restaurant with his wife, he had to watch what he ate, and what he drank; A glass of soda or a bar of chocolate was out of the question. Foods high in potassium or purines (proteins which cause uric acid to be formed) were best avoided.That cuts out loads of everyday things, such as beef, pork, chicken, seafood, mushrooms, asparagus, etc… Bob would have to think about becoming a vegetarian. And alcohol was now off the menu.
Bob figured he’d drunk enough anyway.
Bob got depressed. But not for long.
Bob Lives in France, like me.
He knows there are people with worse things, and he knows he’s lucky to live in a country where health care is free and he can have access to the medicines.
He’s lucky to have a family and friends and colleagues to support him, and a great medical team around him.
He’s lucky enough to be on a list for a new kidney. OK, he knows that it’ll be a challenge, and tough, and his family will worry, and his friends too. But Bob knows he’ll come out the other side, with a new kidney and a better quality of life. Thanks to the gift of an organ from someone.
Bob’s lucky enough to live in a country where they will give him an organ. Where the technology exists.
Bob will wait for a new kidney and do the dialysis. If he doesn’t, do dialysis, then he’ll die.
Bob is on the list as an organ donor. OK, his kidney’s may not be any good. But the rest, help yourself! Liver, lungs, eyes, Bob’s told his family.
Why not tell your family what you want to do when you die. Do you want to donate your organs , or not? Clearly tell your family. That way, they’ll know your wishes should the worst happen. Maybe they’ll take comfort from knowing that you saved a life, or if you choose not to donate, then they’ll respect those wishes.
Bob has the greatest gift. Hope. The day has come for Bob when the risk to remain the same is greater than the risk to change.