Could I One Day Owe My Life to a Pig?
And by pig I don't mean a policeman! I mean the pink, curly tailed, snouty, oink oink kind that roll in mud and smell not too great!
The TV medical drama Holby City, has, I think, over the last year at least been having quite a lot of storylines surrounding the issue of kidney failure, dialysis and transplants. Casualty has done it's fair share too. It is a big issue in this day and age with the change in donor laws this month, more awareness of transplants and being a donor on the donor register (everyone must get on it PLEASE). But just lately, it seems, that everywhere I turn I am confronted with a reminder of my own fate in terms of my own illness. Not least last night on Holby City when the storyline focussed on the illegal trans generic transplantation of a pig kidney into that of a man (ironically a jewish man!!).
For those of you that don't know, I suffer with chronic kidney failure, also called chronic renal failure. Following an almost deadly encounter with meningicocol septicaemia when I was nearly 4 I developed an immunological disease called Focal and Segmental Glomereloschlerosis (FSGS). This means that my immune system takes offence at something in my body for no apparant reason and systematically attacks it 24/7 - in my case objects of my immune system's loathing are my kidneys. The last 30 years have been for the most part fairly normal, save for regular check ups, 24 hour stays in hospital every 3 months as a child for monitoring and tests. I had the slow progressive form of the disease, which, in some cases can disappear altogether, but, it certainly explains why I've been able to have children, as many women with kidney disease are unable to conceive let alone carry a baby successfully. Unfortunately my kidney disease has progressed to the point where my pregnancy with Jack was severely affected, he was born at 32 weeks weighing 10 grams short of 3lb having suffered from a condition called IUGR (Inter uterine growth retardation) a direct result of my kidney failure and the pre eclampsia, and in the minutes leading up to his birth I was so ill it was thought I was going to suffer a heart attack because of the fluid build up in my body and my extreme potassium levels. I was told 3 months after he was born that my kidney function was down to just under 20% and that a transplant would be needed in the next 1-2 years. My kidney disease has caused something called IGA Nepropathy, this is scarring of the kidneys which causes them to shrink. The average kidney is roughly 12 cm in size, mine are around 9cm. This may not sound that small, but when you think that quite a lot of what is left is dead scar tissue rather than active kidney it's quite scary. Had I been diagnosed with FSGS now, in it's early stages then it can be treated with immunosuppresants but that sort of treatment was in it's infancy 25 years ago and now I'm too far gone for it to be of benefit.
As it stands today I'm fairly well, all things considered. My kidney function has doubled, by some miracle it has to be said, but I'm still chronically ill and the prognosis is still the same, the time frame has just changed a little. Kidney failure, is, to all intensive purposes a terminal illness, there is no cure. There are treatments, dialysis and a transplant being the two that everyone knows about. A transplant is NOT a cure, it is a more effective way than dialysis of treating kidney disease. A transplant is followed by a life long regime of immunosuppresants which themselves have side effects, not least, making the patient more prone to the ravages of some cancers, especially skin cancer and cancer of the blood. It is hoped that I will receive a transplant from a live donor i.e. a member of my family, my mum and my sister have been identified as potential good donors, however, the longer I keep going on the kidneys I was born with the less likely my mum is to be a donor as she is obviously getting older, and whilst she is only 53 next month, who knows how long it will be before I need a transplant. Potentially if I go another 4 or 5 years my eldest sons could be considered as donors - we are the same blood group for start! Transplants also don't last forever, though some do, especially those from a living donor, but the average life span is about 10 years. A scary statistic for me is that if I had to start dialysis tomorrow and never received a transplant, I could expect to live approx another 14 years - that would make me 47 - hardly a long life is it?!!
Like I said at the moment I am, by my standards, fairly well. I've never fired on all cylinders really so my standards of healthy probably fall well short of a normal healthy person. I suffer from tiredness like you would not believe, I fall into the trap of having a few days when I feel completely well and over doing it and then BAM I'm both mentally and physically drained for up to a week. It is my ferritin levels that are low, that is the iron, not the stuff everyone thinks of as haemoglobin, which, in my case is pretty much about normal. Iron infusions direct into my blood stream fail to solve the problem and the doctors have given up for a while. But an average ferritin level is around 250, mine hovers between 35-60. The kidneys are responsible for quite a bit that goes on in your body, they control the blood pressure, the toxins in your blood, your calcium levels, your iron levels, your potassium levels which are responsible for regularing your heart muscles, too much is a very very bad thing! I am on a blood pressure tablet, high blood pressure causes kidney disease, kidney disease causes high blood pressure, it's a vicious circle! I don't take anything else, my bloods are, except for the toxins which are creatinine and urea (both double the higher end of the normal range) pretty normal with no suggestion that anything is wrong with me, just the high level of toxins and the low levels of ferritin. Another baby would render me on dialysis, and the chances of it being successful are, according to the powers that be, quite low, especially considering my being prone to twin pregnancies. In December of last year Stephen and I discovered the consequences of my being pregnant on the tablets I am on which, should, in any event be stopped at least 3 months before conception if pregnancy is planned. They are toxic to an embryo and even if I had gone on to have a baby there was a good possibility that it would have suffered some sort of permanent damage from my tablets, most probably a heart defect or brain damage. So it's just not worth the risk. People do assume that because I have 3 kids already that makes it alright not to have anymore. But, although I don't want another child (15 shirts to wash and iron each week is ENOUGH thank you!!) the thought that that particular part of me is gone is quite a hurdle to overcome, it's like having part of what makes you a woman, your femininity so to speak, ripped from you without your consent.
Do I worry about what lies ahead? Yes, god yes I do. when they told me I would need a transplant in 1-2 years my world caved in and I cried like I have never cried before, and in fact Stephen cried more than I did. The boys, it has to be said, took it bloody well and immediately said that if I wanted a kidney I could have theirs (I may just hold them to that one day!!). When I got my Civil Service pension statement through a few months ago I wondered if I would actually be alive in 2033 to reap the benefits when I'm 60. The thought of dying doesn't really scare me, but the repercussions of my dying do. What if I went in the next few years - the brothers would be split up - the twins going with their dad and Jack staying with Stephen. What about Stephen, I think he dreads me dying more than he should do, he doesn't talk about it, but I know the whole thing scares him shitless. We don't really talk about it, my mum and dad never really did either, they brought me up as they would any other child and my kidney disease was just something I lived with, and not in spite of. I owe a lot to them for never dwelling on it, not wrapping me in cotton wool, I think that their laid back approach has been beneficial to my health because I've developed the same approach, with some areas of caution regarding my diet and the activities I do, but a positive attitude does do a lot of good. Sometimes I do use my disease as an excuse for things - like using the disabled loo if the women's loos are full, if anyone asks I just say I have kidney failure - which is a recognised disability anyway - and no one bats an eyelid after that. I do get cross about things like being treated like a skivvy for the boys and stephen and do have a go at my very lazy husband that considering his knowledge of my health he seems to do nothing to help make life easier for me round the house. Common conversation with my nearest and dearest "I'm so tired I can't lift my head I think you'll have to help me to bed". The old man responds "What you tired for - I've been out at work all day?!!" Nuff said!!
This post hasn't quite gone the way I wanted it to, I just wanted to voice out loud my opinion on pig transplants but have ended up rambling on about kidney disease and what it is and how it affects me. But I think perhaps, that is a good thing, I get so many silly comments made everytime I have a glass of wine in front of people "should you be drinking that?" "won't that stuff kill you?". Lets get this perfectly straight ALCOHOL DOES NOT CAUSE KIDNEY FAILURE, unless of course it's abused and the liver packs up in which case the kidney bares the brunt of pure alcohol pouring through it with it's not supposed to do. My liver function tests (LFTS ) are pukka, I have a perfectly healthy liver and I will continue with my perfectly healthy consumption of wine!
The subject of pigs as potential kidney donors has been mentioned several times to me by my nephrologist. Perhaps he thinks I will go on long enough to be considered as a potential donor without having the need to put a family member under the knife. At the moment the very idea makes me feel ill. I know that heart valve replacements are made from pigs, but it's just the pig tissue, it isn't a functioning organ. At the moment it is a long way of, scientists are battling with the problem of CJD and other animal diseases which a recipient would be prone to if they were to take on the organ of a pig. Work has been done in Canada and the states on a synthetic kidney, this would be inserted like a normal kidney and replaced quite easily should it go wrong, but, again it's a long way of being used as the norm, results are mixed and it's been tested on those who have had acute kidney failure (when the kidney fails for a short period of time as a result of another illness, accident etc). Maybe, when the time comes for me, and I'm desperate for my life back I would consider it, but the thought of being asked if I knew anything about my donor and having to say "yeah, it was a pig" just doesn't sit well with me at the moment.
The TV medical drama Holby City, has, I think, over the last year at least been having quite a lot of storylines surrounding the issue of kidney failure, dialysis and transplants. Casualty has done it's fair share too. It is a big issue in this day and age with the change in donor laws this month, more awareness of transplants and being a donor on the donor register (everyone must get on it PLEASE). But just lately, it seems, that everywhere I turn I am confronted with a reminder of my own fate in terms of my own illness. Not least last night on Holby City when the storyline focussed on the illegal trans generic transplantation of a pig kidney into that of a man (ironically a jewish man!!).
For those of you that don't know, I suffer with chronic kidney failure, also called chronic renal failure. Following an almost deadly encounter with meningicocol septicaemia when I was nearly 4 I developed an immunological disease called Focal and Segmental Glomereloschlerosis (FSGS). This means that my immune system takes offence at something in my body for no apparant reason and systematically attacks it 24/7 - in my case objects of my immune system's loathing are my kidneys. The last 30 years have been for the most part fairly normal, save for regular check ups, 24 hour stays in hospital every 3 months as a child for monitoring and tests. I had the slow progressive form of the disease, which, in some cases can disappear altogether, but, it certainly explains why I've been able to have children, as many women with kidney disease are unable to conceive let alone carry a baby successfully. Unfortunately my kidney disease has progressed to the point where my pregnancy with Jack was severely affected, he was born at 32 weeks weighing 10 grams short of 3lb having suffered from a condition called IUGR (Inter uterine growth retardation) a direct result of my kidney failure and the pre eclampsia, and in the minutes leading up to his birth I was so ill it was thought I was going to suffer a heart attack because of the fluid build up in my body and my extreme potassium levels. I was told 3 months after he was born that my kidney function was down to just under 20% and that a transplant would be needed in the next 1-2 years. My kidney disease has caused something called IGA Nepropathy, this is scarring of the kidneys which causes them to shrink. The average kidney is roughly 12 cm in size, mine are around 9cm. This may not sound that small, but when you think that quite a lot of what is left is dead scar tissue rather than active kidney it's quite scary. Had I been diagnosed with FSGS now, in it's early stages then it can be treated with immunosuppresants but that sort of treatment was in it's infancy 25 years ago and now I'm too far gone for it to be of benefit.
As it stands today I'm fairly well, all things considered. My kidney function has doubled, by some miracle it has to be said, but I'm still chronically ill and the prognosis is still the same, the time frame has just changed a little. Kidney failure, is, to all intensive purposes a terminal illness, there is no cure. There are treatments, dialysis and a transplant being the two that everyone knows about. A transplant is NOT a cure, it is a more effective way than dialysis of treating kidney disease. A transplant is followed by a life long regime of immunosuppresants which themselves have side effects, not least, making the patient more prone to the ravages of some cancers, especially skin cancer and cancer of the blood. It is hoped that I will receive a transplant from a live donor i.e. a member of my family, my mum and my sister have been identified as potential good donors, however, the longer I keep going on the kidneys I was born with the less likely my mum is to be a donor as she is obviously getting older, and whilst she is only 53 next month, who knows how long it will be before I need a transplant. Potentially if I go another 4 or 5 years my eldest sons could be considered as donors - we are the same blood group for start! Transplants also don't last forever, though some do, especially those from a living donor, but the average life span is about 10 years. A scary statistic for me is that if I had to start dialysis tomorrow and never received a transplant, I could expect to live approx another 14 years - that would make me 47 - hardly a long life is it?!!
Like I said at the moment I am, by my standards, fairly well. I've never fired on all cylinders really so my standards of healthy probably fall well short of a normal healthy person. I suffer from tiredness like you would not believe, I fall into the trap of having a few days when I feel completely well and over doing it and then BAM I'm both mentally and physically drained for up to a week. It is my ferritin levels that are low, that is the iron, not the stuff everyone thinks of as haemoglobin, which, in my case is pretty much about normal. Iron infusions direct into my blood stream fail to solve the problem and the doctors have given up for a while. But an average ferritin level is around 250, mine hovers between 35-60. The kidneys are responsible for quite a bit that goes on in your body, they control the blood pressure, the toxins in your blood, your calcium levels, your iron levels, your potassium levels which are responsible for regularing your heart muscles, too much is a very very bad thing! I am on a blood pressure tablet, high blood pressure causes kidney disease, kidney disease causes high blood pressure, it's a vicious circle! I don't take anything else, my bloods are, except for the toxins which are creatinine and urea (both double the higher end of the normal range) pretty normal with no suggestion that anything is wrong with me, just the high level of toxins and the low levels of ferritin. Another baby would render me on dialysis, and the chances of it being successful are, according to the powers that be, quite low, especially considering my being prone to twin pregnancies. In December of last year Stephen and I discovered the consequences of my being pregnant on the tablets I am on which, should, in any event be stopped at least 3 months before conception if pregnancy is planned. They are toxic to an embryo and even if I had gone on to have a baby there was a good possibility that it would have suffered some sort of permanent damage from my tablets, most probably a heart defect or brain damage. So it's just not worth the risk. People do assume that because I have 3 kids already that makes it alright not to have anymore. But, although I don't want another child (15 shirts to wash and iron each week is ENOUGH thank you!!) the thought that that particular part of me is gone is quite a hurdle to overcome, it's like having part of what makes you a woman, your femininity so to speak, ripped from you without your consent.
Do I worry about what lies ahead? Yes, god yes I do. when they told me I would need a transplant in 1-2 years my world caved in and I cried like I have never cried before, and in fact Stephen cried more than I did. The boys, it has to be said, took it bloody well and immediately said that if I wanted a kidney I could have theirs (I may just hold them to that one day!!). When I got my Civil Service pension statement through a few months ago I wondered if I would actually be alive in 2033 to reap the benefits when I'm 60. The thought of dying doesn't really scare me, but the repercussions of my dying do. What if I went in the next few years - the brothers would be split up - the twins going with their dad and Jack staying with Stephen. What about Stephen, I think he dreads me dying more than he should do, he doesn't talk about it, but I know the whole thing scares him shitless. We don't really talk about it, my mum and dad never really did either, they brought me up as they would any other child and my kidney disease was just something I lived with, and not in spite of. I owe a lot to them for never dwelling on it, not wrapping me in cotton wool, I think that their laid back approach has been beneficial to my health because I've developed the same approach, with some areas of caution regarding my diet and the activities I do, but a positive attitude does do a lot of good. Sometimes I do use my disease as an excuse for things - like using the disabled loo if the women's loos are full, if anyone asks I just say I have kidney failure - which is a recognised disability anyway - and no one bats an eyelid after that. I do get cross about things like being treated like a skivvy for the boys and stephen and do have a go at my very lazy husband that considering his knowledge of my health he seems to do nothing to help make life easier for me round the house. Common conversation with my nearest and dearest "I'm so tired I can't lift my head I think you'll have to help me to bed". The old man responds "What you tired for - I've been out at work all day?!!" Nuff said!!
This post hasn't quite gone the way I wanted it to, I just wanted to voice out loud my opinion on pig transplants but have ended up rambling on about kidney disease and what it is and how it affects me. But I think perhaps, that is a good thing, I get so many silly comments made everytime I have a glass of wine in front of people "should you be drinking that?" "won't that stuff kill you?". Lets get this perfectly straight ALCOHOL DOES NOT CAUSE KIDNEY FAILURE, unless of course it's abused and the liver packs up in which case the kidney bares the brunt of pure alcohol pouring through it with it's not supposed to do. My liver function tests (LFTS ) are pukka, I have a perfectly healthy liver and I will continue with my perfectly healthy consumption of wine!
The subject of pigs as potential kidney donors has been mentioned several times to me by my nephrologist. Perhaps he thinks I will go on long enough to be considered as a potential donor without having the need to put a family member under the knife. At the moment the very idea makes me feel ill. I know that heart valve replacements are made from pigs, but it's just the pig tissue, it isn't a functioning organ. At the moment it is a long way of, scientists are battling with the problem of CJD and other animal diseases which a recipient would be prone to if they were to take on the organ of a pig. Work has been done in Canada and the states on a synthetic kidney, this would be inserted like a normal kidney and replaced quite easily should it go wrong, but, again it's a long way of being used as the norm, results are mixed and it's been tested on those who have had acute kidney failure (when the kidney fails for a short period of time as a result of another illness, accident etc). Maybe, when the time comes for me, and I'm desperate for my life back I would consider it, but the thought of being asked if I knew anything about my donor and having to say "yeah, it was a pig" just doesn't sit well with me at the moment.
posted by Al at 7:19 AM
4 Comments:
Hi honey, phew long time since I had a chance to read blogs!! Your big boys are so handsome, and Jack is just stunning! So beautiful!
I am with you 101% on the transplant and organ donation issue. God forbid it will come to it, but if Finnkus ever needs a lung transplant.......oh so ahrd to think about it. i think you are one brave woman Al. I really do. You aint going anywhere for a long time missus....you need to keep your daughter in laws in order!
There is a website......live life then give life....where people can sign up to register to be on the donor list. Run by 2 girls with cf. Anyone reading this, please please go sign up!!!! You could save so many lives.
Big hugs Al
Love Sx
Al - I have never thought much about this but reading your blog has made me think about how I would feel if your position and I think I have to agree with you.
Hope it's not a bridge that you need to cross for a long time yet.
Bec x
Al,
I have stumbled across your blog looking to see what other people are saying about FSGS these days. Your story is amazing. I am in the early stages of my FSGS, which I got from a strep infection. (By early stages, I mean I've only had it for about five years, not my whole life)
I look to the future with the same dread, and unfortunately have the same thoughts about my pension. My wife tends to avoid the future conversations also.
I hope to stumble onto your blog again in the future!
Al, my seven-year-old daughter has FSGS and is doing OK for now despite 2 years of horrid drugs and no sign of remission. She loves babies and talks constantly about having them but I think the advice in the UK is not even to consider it. I think I know what your advice would be, despite the risks. Thanks for your blog - made me feel less alone. Sarah x
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