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.

New Beginnings

I'm Loving - My handsome boys

I'm Hating - The state of my house - it looks like I've been burgled!!

I'm Looking forward to - The old man going away this weekend for 5 whole nights!!!!


Well today Daniel and Philip started secondary school. They took it in their stride, weren't in the least bit worried about it, apart from learning how to do a tie. They didn't go to school with one on, they get that today when they are sorted into their houses, fingers crossed the boys are the same house because otherwise sports day is going to be a bit different!!! It's cost me a fortune this secondary school lark, just for two blazers and two rugby shirts it's cost £130!!! The rest all adds up to a about £400, with £200 alone being spent on school shoes, footie boots and white trainers. What with France costing me £600 earlier in the year it's been a bloody expensive 6 months!!

Here they are in their uniforms, they look so handsome, I feel so incredibly lucky to have 3 heartbreakers (though in years to come it'll probably cause me nothing but grief!!).

Jack wanted in on the act too, after all it was his first day back at pre school today.

I left them at the school gates - it was uncool to go ANY further!! They went on quite happily, they were met by a chaperone and went of in a group of about 6 boys. They are luckier than most, because on days like this they have each other for support. Tomorrow they'll barely acknowledge each other in the corridor, but, for today at least, they will get on. And pssst don't tell anyone because Daniel gets VERY upset about this issue - Phil now has bigger feet than Daniel!!! The woman in the shoe shop joked that this meant Phil would be the taller of the two and Daniel, being Daniel, has taken this quite seriously and keeps puffing his chest out and standing up very straight when he's stood next to Phil. I'ts only half a size (they are a 6 1/2 and a 6 G) but to Phil this is a monumental accolade. The other good news is that there is a possibility that Daniel may not need his special needs help at school. Some of you may not be aware but Daniel has a condition called Autistic Spectrum Disorder (ASD) and although very mild on the spectrum scale (he leans towards autistic tendences rather than the autism itself)still needed help at school with social skills and his gross and fine motor skills (there is much more to autism than you think). He also has hypertonic muscle syndrome which means he's Mr Bendy but that has improved somewhat over the last year and it's believed this indicates that Daniel is about to hit puberty. The SENCO who used to work with Daniel thinks that he should be re assessed because she thinks he will be fine and we just have to accept that Daniel will always talk very loudly, scream like he's being slaughtered on occasion and be very particular about certain things and how they are done. So fingers crossed!!

Other news. Had to do an emergency dentist run on Monday and had a nerve removed from a healthy tooth, I've never known pain like it, I was in tears in the dentist and when I went there in the morning and he said he couldn't do the work until late afternoon I nearly fainted with the horror of having to go through another 6 hours of pain, but I went to Bromley to get last minute bits and pieces for the boys and a new suit for Stephen for his conference and saw my brother in law and sister in law, didn't say anything to them, but they had little Liam with them and I realised then that life was too short, and things had gone on for long enough and told myself I was going to get in touch with Caryn. As it happened, on my way to the dentist that afternoon she was getting a prescription from the chemist (she's a bona fide hypochondriac is Caryn and is ALWAYS ill despite being only 22). She usually just ignores me, even if we're in the same room, but she came and spoke to me and we got on really well and arranged for me to go and see Liam the next day. Agreeing that despite the brothers falling out we wouldn't let it affect the kids. Yet hours later, she cancelled. I'm not sure if the reason she gave was a real one or just because my brother in law has stamped his foot, but I was gutted, and now I have decided that I've made the effort now, the ball is in their court. As for my tooth, it's bliss, I have a dressing on it at the mo, and then at the beginning of October I will go back to have the nerve channel filled.

Effed of with my GP who when picking up a repeat prescription this morning has left a blood test form for me to go and get the usual run of the mill tests done to check my kidney function. This may not sound like a unwarranted request to many but to me it's him being his usual nosey self so he can call me in and "discuss" my "disease"!! All my bloods are done up at Kings College Hospital, the consultants prefer it that way because their equipment is so much more sophisticated than most hospitals, they were the ones who found out I was no longer rhesus negative but borderline because their equipment picked up traces in my blood that the other hospital hadn't. Not only that I only have one good vein left, 30 years of blood tests have taken their toll and my other veins have gone deep into hiding in my body. This vein endures blood test after blood test, iron injections etc and will be needed when it comes to me going on dialysis so I'm keen to preserve it. Told the doctor I'll get my bloods done at my next Kings appointment, which is next week (which I'm postponing because I have no one to look after Jack). It's nice having bloods done in the renal clinic because you get them done there and then, no ticket and waiting in pathology, you have your appointment with the doc then you go straight through for bloods, simple as that!

Mother and toddler group is back tomorrow, and I'm a one man band now, Jackie has a job and whilst she doesn't work thursdays is going to use that day to go to college because she's gone back to dental nursing but isn't qualified and you have to be. She hasn't got college sorted yet and I do feel a bit pissed of about being dropped in it like this, especially as I will have to cope on my own with the financial shortfall in the rent, but hopefully I can find someone else to take over Jackie's reins because I will only be running it til just after christmas and it would be a shame to close it down as this one is proving so much more popular than the last one.

Right, in the time it's taken me to write this since dropping Jack of I've already been up there and done his bum and come back again so now it's time to go back AGAIN and pick him up!!

Is It Me Or Are Drivers Getting Younger These Days?!!

That is of course my youngest (and loudest!!) son behind the wheel of our temporary company car. Stephen got a Vectra, had a mad bit of worrying he was going to get a Zafira, Stephen and people carriers do NOT get on, we had the Honda one once at my insistence (despite having 3 kids we didn't need one as we only have one car seat!!) and I swear he used to almost cry every time he drove it, so we sold it and I've never seen anyone so happy in all my life especially as the buyer paid about 10k in cash. Anyway, we have a 2 year old Vectra, came to the end of it's 2 year lease yesterday and Stephen has it for 8 weeks until the car he orders turns up. So have to go to the dealer tomorrow to have a look see and then he'll put an order in on Monday. I quite like the idea of looking for a brand spanking new car we don't have to pay for! We will sell the Ibiza as it's worth the most and we may sell the Beamer, but because of the vandalism it's gonna need repairing, by Stephen himself or professionally which could be expensive (because it's a Beamer!!!).

Here's the new car. Not very impressive, but the blond behind the wheel is a real stunner!!

Thank you for all your lovely comments about Jack's hair (though above he's a sweaty head having been asleep on the leather settee when his dad got home!). Stephen went ballistic, personally I think he likes the attention Jack gets when we're out and about, though he hates the other dads calling him Curly Temple! So he wasn't happy about the new cut, but it's flicked back out at the sides again so it's just a shorter version of what he had before (PHEW!!).

Had a weird feeling earlier, was thinking about the boys going to school next week and whether I had everything and just the thought of them going to secondary school set me of having a panic attack. It wasn't a bad one, just really bad palpitations, but I'm actually very very nervous about them going. I don't worry about them coping, they are very very bright and will do really well and adapt quite easily, but I just worry about whether they have got everything they need, the right sort of stuff, god forbid it should be obvious to the rest of the kids I bought their shirts in Primarni (primark!!). As well as this it's like I've been made redundant, it's difficult to explain, but soon it will be christmas and then the boys will be 12 just after and I feel like that's it, I'm no longer their mummy I'm their mother, the one who if they happen to be seen with me will cause them no end of embarrassment and no doubt teasing. I never went to secondary school, I was a boarder at a prep school til I was 13 then graduated to the college thereafter and public/private schools are very different, especially when you are a boarder, you don't get letters to take home, you have to go to school on Saturdays!! So secondary school is as much a milestone for me as it is my children. I don't think I'm explaining myself very well, but I guess the closest way to describe what I'm feeling is "bereft". All of you with lickle ones and no big ones, please please please enjoy every flippin second because before you know it you are arguing in shops over designer trainers and in a constant battle of wills! In 4 months from now I will be saying "next year I'll have two teenagers in the house"!!