09-05-2008, 11:47 AM
who wants me to emal them my free book on my experiences . see synopsis below.
NO KIDNEYS: NO CRY
I have polycystic kidneys which is the most common genetic, life-threatening disease, affecting an estimated 12.5 million people worldwide. It affects more people than cystic fibrosis, muscular dystrophy, haemophilia, Down's syndrome and sickle cell anaemia combined.
My family only realised my mother was a carrier of this disease after I was hospitalised as an 11-year-old after being beaten up at school which resulted in me peeing blood for the next two months and forbidden from sitting, let alone get up from my bed. The next decade I was in and out of hospital after other bleeding incidents such as a car crash, using a framed rucksack on my back and being knocked. There was no treatment or cure although on one occasion the doctor tried to burst some of the larger cysts to see if it would have any effect. It didn't.
On one occasion I had a delicate investigative procedure to see if it was only the one kidney that bled. This meant a general anaesthetic, having "nil by mouth" for 24 hours beforehand. My last meal?: "kidneys in gravy".
Two years into my law degree the expected kidney function deterioration began and to reduce symptoms I was but a low-protein diet to give the kidneys less to do and was given tablets to keep my blood pressure under control. The function began to further deteriorate. Eventually the diet became more restricted the blood pressure tablets were increased. I was put on a low potassium diet and told to drink pints and pints of water each day to flush out the toxins in my body that my kidney was failing to do any more. About a month before my law degree finals at the outpatient’s clinic I asked how long it would be before I would be on dialysis. I was told a month.
I got through the exams but with miraculous bad timing on the day I got my letter stating I had passed it, in the same post I received a second letter asking me to visit the hospital to start dialysis. My body managed to put this day off for several months. It was decided to take both my enlarged kidneys out, as they left no room for the possibility of a future transplant. The shock to my body of having 18 pounds of kidneys removed (kidneys are normally two pound each) resulted in the loss of my memory, which I eventfully found again several days later. When I came round after this major operation I was forbidden any form of painkillers for several hours as my blood pressure had nose-dived and it would have been very dangerous to take any until it had recovered.
The solicitor's ( attorney if you are reading this from the USA) finals course that I had a place on had to be declined as I was now having a regular dialysis treatment each week. My diet was restricted even more and so was my fluid intake, as without kidneys you can't pee. The next time I would ever pee again would be if I had a transplant.
The general ignorance I encountered by the public was quite astounding. For instance, people thought it impossible that you could live with no kidneys (“How do you pee then?” –“You don’t”; “Well where does the urine go?” – “You don’t make urine if you haven’t got any kidneys”; “So where does all the fluid go that you drink?” - “That’s the wonder of the kidney machine”). Tact was not that strong either. On a bad day when I needed to get dialysed at hospital, on getting into a taxi ( cab)) and explaining where I needed to go and why, the taxi drivers retort was: "I would rather be dead than be on a kidney machine".
After a lot of extensive investigations my Dad, courageously donated one of his kidneys. He was off work for several months and when he made a claim against his private health insurance, as he ran his own business, it was rejected on the grounds that it was a "self inflicted injury"
Immediately after the transplant I was put in a room but not allowed get well cards, radio, television or anything else to occupy my mind or allowed visitors because in the initial stages I had a very high dose of immunosuppressive drugs and was having reverse barrier nursing. This is the opposite of barrier nursing as you are being protected from the outside world as opposed to the other way round.
I was able to look through a large window to the occupants of the other room dedicated to the same recovery facilities and spotted a 14-year-old girl who was also recovering from a similar operation to me. However her parents had forbidden any blood transfusion, as they were Jehovah's Witnesses although it got me wondering what they thought was inside her new kidney. Ribena?
My kidney, or rather my Dad's, was working well but I had several rejection episodes which meant I had to put off for another year by attempts to start the solicitor's finals course. Eventually I took and completed the course, but had to take one resit but it was at this stage when I realised my dad's kidney was rejecting. All the same old symptoms returned but a few weeks before I took the exam the doctors allowed me blood transfusions to bring my haemoglobin count up but not as high as healthy people to enable me to get through the exam which I eventually passed.
Shortly before this my Mother’s kidneys started to fail and she began dialysis. Like me she could not go on the transplant list until she had her enlarged polycystic kidneys removed. When she recovered from the operation, a few months later she was fortunate – or rather less unfortunate - and had a kidney transplant..
I on the other hand returned to dialysis. (I asked my Dad if I could have the other one but no luck there). Many months later I was phoned up by the hospital and called in, had many tests, was put on dialysis all night, as there was a hope of a compatible kidney. Next to me in the same ward was another young man who I soon discovered was there for the same reason and to my relief there were two kidneys in a hospital and we were not fighting over the same one. We both had a transplant that morning but unfortunately his rejected several days later.
I was soon discharged and returned to my voluntary work at a legal advice centre. A few weeks later having just had a check up I was phoned by the hospital and told to immediately go back on the low potassium diet has my kidney wasn't working properly. (Was my new transplant already rejecting?). I had just had a high potassium meal but waited nervously for my repeat tests the following day and then phoned up later for the results, to be told my kidney was working perfectly. The potassium machine that wasn’t.
Eventually I became a solicitor working for a charity; a law centre but only worked part-time. This was not because of lack of capacity to work full-time but to ensure I enjoyed my health while free from the kidney machine and not be cooped up in an office.
There is always a downside to kidney transplants: the regular drugs you take every day; the constant checkups and not knowing how long your transplant will last. However nature tends to win in the end, not necessarily by getting the kidney to reject but by reacting to the constant daily use of powerful drugs such as steroids and immune suppression drugs.
I broke a leg up a Welsh mountain and was in the unfortunate situation of having to get down it myself but after recovering from the broken leg, a bout of deep vein thrombosis ( not to be confused with the 1930’s blues singer) resulting in the new discovery that I had osteoporosis, which is a long-term effect of steroid use. I often question whether the fall was actually very fortunate because had I not broken my leg my osteoporosis treatment may have been started years later.
More recently I have encountered the consequence of the long-term use of immunosuppression drugs: non-Hodgkin's lymphoma The drugs and radiotherapy placed me in remission but I now have L’hermiites/barbers shop syndrome (get googling ) which hopefully should go in a few months or else its not the radiotherapy that caused it.
The kidney is going Ok but ironically my recent diagnosis were both a direct consequence of its success that I can hardly complain about considering the alternative.
My Mum’s transplant lasted for 10 years but she has since died. My Dad is still healthy and I hope to keep the cancer, osteoporosis (and oh didn’t I tell you my heart condition as result of high blood pressure years before) at bay and complete the final draft of a book I have written, as yet unpublished, about these experiences including some frankly hilarious incidents as an NHS renal patient. My kidney has lasted over 18 years, which is twice as long as the average transplant and is still going strong. In fact the last time I had a check up with one of the real consultants, who suffered kidney stones recently, he told me my renal function was better than he is. And I've only got one kidney.
*********
NO KIDNEYS: NO CRY
I have polycystic kidneys which is the most common genetic, life-threatening disease, affecting an estimated 12.5 million people worldwide. It affects more people than cystic fibrosis, muscular dystrophy, haemophilia, Down's syndrome and sickle cell anaemia combined.
My family only realised my mother was a carrier of this disease after I was hospitalised as an 11-year-old after being beaten up at school which resulted in me peeing blood for the next two months and forbidden from sitting, let alone get up from my bed. The next decade I was in and out of hospital after other bleeding incidents such as a car crash, using a framed rucksack on my back and being knocked. There was no treatment or cure although on one occasion the doctor tried to burst some of the larger cysts to see if it would have any effect. It didn't.
On one occasion I had a delicate investigative procedure to see if it was only the one kidney that bled. This meant a general anaesthetic, having "nil by mouth" for 24 hours beforehand. My last meal?: "kidneys in gravy".
Two years into my law degree the expected kidney function deterioration began and to reduce symptoms I was but a low-protein diet to give the kidneys less to do and was given tablets to keep my blood pressure under control. The function began to further deteriorate. Eventually the diet became more restricted the blood pressure tablets were increased. I was put on a low potassium diet and told to drink pints and pints of water each day to flush out the toxins in my body that my kidney was failing to do any more. About a month before my law degree finals at the outpatient’s clinic I asked how long it would be before I would be on dialysis. I was told a month.
I got through the exams but with miraculous bad timing on the day I got my letter stating I had passed it, in the same post I received a second letter asking me to visit the hospital to start dialysis. My body managed to put this day off for several months. It was decided to take both my enlarged kidneys out, as they left no room for the possibility of a future transplant. The shock to my body of having 18 pounds of kidneys removed (kidneys are normally two pound each) resulted in the loss of my memory, which I eventfully found again several days later. When I came round after this major operation I was forbidden any form of painkillers for several hours as my blood pressure had nose-dived and it would have been very dangerous to take any until it had recovered.
The solicitor's ( attorney if you are reading this from the USA) finals course that I had a place on had to be declined as I was now having a regular dialysis treatment each week. My diet was restricted even more and so was my fluid intake, as without kidneys you can't pee. The next time I would ever pee again would be if I had a transplant.
The general ignorance I encountered by the public was quite astounding. For instance, people thought it impossible that you could live with no kidneys (“How do you pee then?” –“You don’t”; “Well where does the urine go?” – “You don’t make urine if you haven’t got any kidneys”; “So where does all the fluid go that you drink?” - “That’s the wonder of the kidney machine”). Tact was not that strong either. On a bad day when I needed to get dialysed at hospital, on getting into a taxi ( cab)) and explaining where I needed to go and why, the taxi drivers retort was: "I would rather be dead than be on a kidney machine".
After a lot of extensive investigations my Dad, courageously donated one of his kidneys. He was off work for several months and when he made a claim against his private health insurance, as he ran his own business, it was rejected on the grounds that it was a "self inflicted injury"
Immediately after the transplant I was put in a room but not allowed get well cards, radio, television or anything else to occupy my mind or allowed visitors because in the initial stages I had a very high dose of immunosuppressive drugs and was having reverse barrier nursing. This is the opposite of barrier nursing as you are being protected from the outside world as opposed to the other way round.
I was able to look through a large window to the occupants of the other room dedicated to the same recovery facilities and spotted a 14-year-old girl who was also recovering from a similar operation to me. However her parents had forbidden any blood transfusion, as they were Jehovah's Witnesses although it got me wondering what they thought was inside her new kidney. Ribena?
My kidney, or rather my Dad's, was working well but I had several rejection episodes which meant I had to put off for another year by attempts to start the solicitor's finals course. Eventually I took and completed the course, but had to take one resit but it was at this stage when I realised my dad's kidney was rejecting. All the same old symptoms returned but a few weeks before I took the exam the doctors allowed me blood transfusions to bring my haemoglobin count up but not as high as healthy people to enable me to get through the exam which I eventually passed.
Shortly before this my Mother’s kidneys started to fail and she began dialysis. Like me she could not go on the transplant list until she had her enlarged polycystic kidneys removed. When she recovered from the operation, a few months later she was fortunate – or rather less unfortunate - and had a kidney transplant..
I on the other hand returned to dialysis. (I asked my Dad if I could have the other one but no luck there). Many months later I was phoned up by the hospital and called in, had many tests, was put on dialysis all night, as there was a hope of a compatible kidney. Next to me in the same ward was another young man who I soon discovered was there for the same reason and to my relief there were two kidneys in a hospital and we were not fighting over the same one. We both had a transplant that morning but unfortunately his rejected several days later.
I was soon discharged and returned to my voluntary work at a legal advice centre. A few weeks later having just had a check up I was phoned by the hospital and told to immediately go back on the low potassium diet has my kidney wasn't working properly. (Was my new transplant already rejecting?). I had just had a high potassium meal but waited nervously for my repeat tests the following day and then phoned up later for the results, to be told my kidney was working perfectly. The potassium machine that wasn’t.
Eventually I became a solicitor working for a charity; a law centre but only worked part-time. This was not because of lack of capacity to work full-time but to ensure I enjoyed my health while free from the kidney machine and not be cooped up in an office.
There is always a downside to kidney transplants: the regular drugs you take every day; the constant checkups and not knowing how long your transplant will last. However nature tends to win in the end, not necessarily by getting the kidney to reject but by reacting to the constant daily use of powerful drugs such as steroids and immune suppression drugs.
I broke a leg up a Welsh mountain and was in the unfortunate situation of having to get down it myself but after recovering from the broken leg, a bout of deep vein thrombosis ( not to be confused with the 1930’s blues singer) resulting in the new discovery that I had osteoporosis, which is a long-term effect of steroid use. I often question whether the fall was actually very fortunate because had I not broken my leg my osteoporosis treatment may have been started years later.
More recently I have encountered the consequence of the long-term use of immunosuppression drugs: non-Hodgkin's lymphoma The drugs and radiotherapy placed me in remission but I now have L’hermiites/barbers shop syndrome (get googling ) which hopefully should go in a few months or else its not the radiotherapy that caused it.
The kidney is going Ok but ironically my recent diagnosis were both a direct consequence of its success that I can hardly complain about considering the alternative.
My Mum’s transplant lasted for 10 years but she has since died. My Dad is still healthy and I hope to keep the cancer, osteoporosis (and oh didn’t I tell you my heart condition as result of high blood pressure years before) at bay and complete the final draft of a book I have written, as yet unpublished, about these experiences including some frankly hilarious incidents as an NHS renal patient. My kidney has lasted over 18 years, which is twice as long as the average transplant and is still going strong. In fact the last time I had a check up with one of the real consultants, who suffered kidney stones recently, he told me my renal function was better than he is. And I've only got one kidney.
*********
