A Quick Catch-Up

So where was I, before I was interrupted?

I feel I ought to write something in defence of the net; it's actually a good place.  Yes, I may have had unwanted contact from one individual and it's possible for a person's past to rear up its ugly head sometimes, but the web has also been responsible for me reconnecting with someone with whom I was very good friends, when we met at Royal Holloway during my first M.A back in 2001.  We've shared a couple of very long phone conversations since this initial discovery of me, by the lady in question, and it's amazing to feel as if the friendship is just where it was all those years ago!  Hopefully we will have the opportunity to actually see each other in person - and yes, if you are reading this, it is a plug from me to you to get on and apply to do that PhD; I want to proof-read that 100, 000 word book about Isabella!  I'm on the case of several friends about this particular issue, so all of you who are in that boat there is one thing I have to say - hop to it!

Aside from that, in the weird world of Eve and medication, things are afoot.  After another consultation with another doctor about blood sugar levels, it seems apparent I can not tolerate the Diabetes tablets, so we're looking at Insulin again, but not all the time.  I shall be on a fairly rigorous testing program and only using the drug when I need to, which may be three times in one day and then not for two.   This is, of course, assuming that I don't have some crashing reaction to it, as I did with Glipizide.  Ending up in A&E, unable to get my blood sugar above 2.6 was not a lot of fun. 

So, why didn't the doctors get my drug right?  Well, this is what my Paleo Pal will recognise as the 'Factor of Eve'.  I've used that phrase a few times too often in front of her!  And by this I mean two things.  Firstly, most doctors are completely in the dark when it comes to transplantation and the nitty gritty of medication requirements.  Secondly, my body doesn't react to any medication, the way it is supposed to react.  No, they don't know why. Harefield and I have been making this up as we go along, for the last 26 ½ years, based on what they know, compared with my observations about my own body.  For example, I am on one drug called Erythropoietin.  It seems that most people are on two doses a week, but that was too much for me, so with a bit of mathematical jigging of numbers from me at home and agreement from the hospital, I inject 700u every 5 days.  I've been counting days like this since I was 15.  I am the only patient I know who has this regime, but at least the hospital was flexible enough to allow me to do this!

However, back to the blood sugar.  Two things came into play regarding my departure to A&E hypoing on a drug that should not have caused hypos: the reaction time of the Glipizide should have been two hours and it extended to about 24 hours in me.  Then, the usual response to a hypo is to eat a sugary snack and something with carbohydrate to get you back on your feet.  This did not work.  In a two hour interval I ate 7 slices of marmalade on toast, two chocolate bars, 4 chocolate biscuits, a packet of crisps and 15 sachets of sugar.  My level remained stubbornly under 3 and I lost a kilo in weight over the course of the night.  My body doesn't react to any medication, the way it is supposed to react.  

And this problem is causing me another problem.  I was becoming anaemic on the vegan diet, despite injecting Erythropoietin, taking iron tablets and taking a multi-vitamin a day.  So, I ran a dietary experiment at the request of one of my medical teams - I had to reintroduce meat/fish/diary and see what happened.  Sticking aside any thoughts of animal welfare for the moment, the whole thing was rather interesting.  Well, it was rather explosive: my stomach now disagrees vehemently with dairy - although goats cheese and eggs are tolerated, as guests in the dairy department.  I ate meat and fish a few times in one week and my blood sugar sky rocketed.  I suspect the actual problem was that because there was something extra back on my plate, the vegetable content was a lot lower.  It was this, or the 'Factor of Eve' intervened and I have a suspected issue with animal fats (I read 'something somewhere' about transplant+diabetes+kidney disease+animal fat).    Briefly, back on the omni diet, my anaemia started to recover.  I also observed that my blood glucose was a lot worse with dairy than meat, and it was worse with meat than with fish.  

But, then I had to get back to the vegan diet to try and sort out the increased blood sugar.  My levels are coming back down again and my anaemia is going back up, despite the medical intervention as detailed above.  I could scream!  In a nutshell, it looks like I don't absorb the nutrients from tablets, I do in dead animal form.  My body does not react to medication the way it is supposed to react.  I have an appointment to discuss all of this with a dietician (poor lady) in November.  She's going to struggle with the next paragraph as well.

Diabetics are supposed to moderate their carbohydrate intake.  Yesterday, I scoffed down a bean burger, a wrap, chips and a cheeseless pizza.  My blood sugar was normal all day.  Today, for lunch I had a home made (no junk food in sight) broccoli and cauliflower curry - I had no rice, potato or naan bread.  My blood sugar shot up to 13.  My body does not behave the way it is supposed to behave.  This will be driving my Paleo pal nuts, if she is reading this!!  But it's evidence, I think, that when it comes to diet that one size does not fit all.  I would not cope on her diet, but I have to say, she looks pretty good on it!  On the other hand, I think she'd keel over in agony if she ate mine.

So what's going on?  As far as I can see, I have a reaction to my steroids.  My blood glucose is elevated (most days) 6 hours after ingestion.  It continues reacting to food for another 6 hours or so.  The doctor now thinks I am not strictly Diabetic.  I am just having a 'Diabetic-Style' reaction.  I have normal blood glucose from about 10pm until about 1pm the next day.  One day I skipped my steroids (ok, I was sick in Bognor and it came back up).  My blood glucose did not rise that day.

I'm a bugger aren't I?

Finding My Donor Family III

I have to admit that since I posted my original note, that I have stalled in my quest.  This has been largely due to commitments at university and if I am honest with myself, I suspect that nothing more will now happen until August, when I am no longer bound by timetables, or deadlines.  And then I have days like today, where the enormity of the situation overtakes everything else in my head and I have to just stop what I am doing and shed a few tears.

I cry because he missed out and because his entire family missed out in watching him do, learn, explore, grow, change, develop.  I often wonder about the lad who saved my life.  He'd be 36 now, if the facts that I have are correct.  Would he have married?  What would he have done?  Was he a good kid? Was he a little monkey?  What happened to his best friends at school?  I know mine rallied  when my life support was nearly switched off - in fact their actions saved my life; I came round, out of a coma when mum repeatedly played the tape of them singing, laughing and talking which they'd sent to the hospital.

I cry because I can never make it right for that boy.  If a kid hurt themselves in the playground, I used to give them a hug and just be there for them; I can't do that for him.  I know absolutely it was not my fault that he died, but there is such a thing as survivors guilt.  I am alive, because he is not.  I just want to scoop him up, give him a big cuddle and tell him it will be alright.

I cry because next year I turn 40.  How on earth did I get to 40?  HOW?  It beggars belief that I am probably going to celebrate this milestone.  I am stunned.  Most people seem to run away from admitting they are THAT old - I'm running towards it, with my arms open wide, ready to embrace the next decade.  The fading looks, the increased wrinkles are minor details that really don't matter.  

I  AM GOING TO MAKE IT TO FORTY! 

I cry because I wonder if I have done enough.  Has my life been justification enough for that hellishly expensive operation and that lad's passing?  Have enough of my days counted?  Have I tried to do the right thing?  Have I been honest enough? Kind enough? Thoughtful enough?  Achieved enough?  Truthful enough? If I ever meet my donor mum, will I meet her expectations?  I have two lives for which to account; have my actions been the right ones?  Should I be a better person?

I cry because of the chances I have had, that would have been denied me, had I died back in 1988.  It so nearly wasn't my turn, but a twist of fate, or a stroke of luck, a guardian angel, or the devil watching over me - however you choose to phrase it - has granted me some of the most amazing experiences a person could wish to have.  I have never managed to work out whether I was the luckiest bugger alive, or if I have had the worst hand of cards dealt.  I tend towards the former, but occasionally the latter wins over.  Either way, I know I won the lottery in 1988 and gained a prize worth more than the multimillions you can win on the Euros.  

Finding My Donor Family II

Two leads have come so far, for possible names.  Obviously, I am not going to divulge that information, because at least one of those is wrong and I have to protect their identities.  I feel oddly and fiercely protective towards the memory of my donor - think mother lion and her cub and you'll be approaching the sentiment.  On top of that, it is not fair to anyone who is not my donor!

So now what and where?  Neither lead matches exactly.  One is a year too young and the other is geographically challenging.  One has a mum who was a bit younger than my guesstimation.   I don't feel as if it can be them, but then I can't count them out of the running.  In neither case has the DOD been confirmed, but both were registered in June.  Then there is the accuracy factor.  I searched myself on findmypast.co.uk (or com?) and the record contains an inaccuracy, so are those two leads accurate?  

If I assume all the information I have believed for 26yrs is wrong, then that widens the search area to a ridiculous level.  I have to at least assume it was a boy and that he was approximately 10 years old.  The only 100% known fact is that he passed away on the 6th June 1988, because organ viability.  It's possible the accident happened a week (several weeks?) before and he spent time in hospital.  A cursory glance at some genealogy sites indicates a number of deaths of youngsters (9-11yrs) in 1988: a lot - far far too many.  It was rather sobering.  Maybe I need to sift through all of them, regardless of location, or exact age.   I feel like I'm looking for a needle in a needle stack.

One thing is certain about this, it is quite easy to build a picture of a random strange family online, just by punching in a few details; in fact, I think I've found one lad's brother on the great FB.  It's great for genealogists, but I do feel a bit stalkerish!

Finding my Donor Family

The Background:

On Monday 6th June 1988, at 8.50pm I was sat in the kitchen at home, in Eastbourne.  I was at the table revising for my exams the following day; mum was upstairs watching TV, her feet were up after a long week working as a nurse at the local hospital.  The phone rang and when I answered a polite lady announced it was the hospital; she asked if she could speak to my mum.  A matching set of donor heart and lungs had been found.

Mum and I were transported to the hospital by a blue-light ambulance.  When we arrived there, it was soon apparent that the operation would go ahead this time and by 11.50pm I had said goodbye to my mum and was in the operating theatre.

Back in 1988, we were told little about our donor families and writing/contact was not encouraged.  I think it has now become common practice for the recipient to write initially and say thank you; if they get a reply back, then both parties can continue to correspond, should they both choose to do so.  

'Thank you' is probably the biggest understatement of the century.  You have no idea how 'thank you' really just does not cut it, until you have been there!  However, I have wanted to write that letter for years, but I never really knew how to go about it, especially as so much time has passed.  There aren't just the emotional issues, but also  practical things to consider; my donor family could have moved and the transplant co-ordinator may not be able to pass on the letter.  What if my letter caused upset, instead of bringing comfort? The last thing I want to do is cause more distress to a family who made the ultimate gift-giving decision, but I know I have to do it.  There is a mum and dad (maybe brothers or sisters) out there whose son is still here, 26 years later.  With this in mind, I am attempting to make my gratitude known - maybe social media can help to make this happen. Feel free to pass this on and repost it!

My Donor:

I don't have much information on which to go, but I do know he was a 10 year old from the Reading area.  I *think he passed away after he left school on the afternoon of Monday 6th June, 1988.  The exact date is guess work; I appreciate that the accident may have happened a week before and he spent time in hospital.  However, considering I got THE CALL just before 9pm, I can't imagine that it would have happened much after the end of the school day, because of roadside attendance of the ambulance and the process that has to happen before donation can be granted.  The chances are that happened before the early evening.

Does this sound like someone you used to know?  Did you live in Reading in 1988 and know a family that lost their son at the beginning of June? I am keen to trace my donor family - even if they don't want to write/meet, I'd love them to know how grateful I am and how great things have been, that the operation was a success and that we are still ok - both of us.

If any info is not right, but the date fits and you donated, then we may be in the right direction.  You'll have to forgive me, it was 26yrs ago and none of this is confirmed...other than the date!!!

A Red Herring?

From a TV donor drive/news interview a few days after my operation I also suspect the following: my donor mum was between 30-45 years of age and she had dark? brown? hair; from the camera angle, it looked short - a jaw length bob? a pixie cut?  The lady was interviewed about organ donation as her son had passed away a few days previously.  The camera angle was from the top of the chest up and you seemed slim, your face was at least.

Even if the description is not quite right, were you interviewed on TV about the need for organs?  Does this seem familiar?

To My Donor Mum,
If you are reading this, please know that your decision was the right one.  I have lived a good life, with many friends and family.  I am loved and I do love.

I am eternally grateful to you and your family; it was down to you that my mum and dad did not lose me.  It was because of your son that I have lived my life.  It is because of your son that I am looking forward to my 40th birthday, next year.  He has run with me for the last 26 years at a steady rate of 90bpm.  He has drawn in air for me, 16 times per minute, hour by hour, day by day.  Firemen, nurses and doctors save people all the time, he has saved me one beat at a time, one drawing in of a breath at a time, for the last 26 years.  It is an understatement that I call him a hero.

Together we have achieved much.  I've been to university, I've travelled, I learned to drive, I have fallen in and out of love.  I've had a career.  I bought a house. I have a cat!  None of this would have been possible without you, or without your lad.

I think of my donor family as my other family; you are never far from my thoughts and as the 6th of June comes round every year I try to mark the occasion in some way.

I have lots more to say to you, but a public posting is not the right place.  If you are 'my mum', or a member of the family then you can leave a comment.  No comments are published, unless I give permission, so all information is confidential.  If you don't want to be found, then this too is absolutely fine.  If you just want to know more about me, then you can read this blog.  Whatever the outcome, I hope that you know we are both ok and that I do my very best to look after your boy.  Together we are an excellent team.

Thank you from the bottom of my heart and with love xx

Vaguely Vegan - Choosing Cheese

I decided that I was going to try and properly stick to a vegan diet from Monday whilst attempting to bring my blood sugar under some sort of control.  By then I'd had very little animal product for a few days and thought I ought to use up the butter, cream, chocolate, eggs etc, so I made a huge chocolate/baileys brownie and force fed it to willing volunteers who needed a morale boost during an essay reading session... Yes, I had a (large-ahem) slice.  Nom.  I am surprised my blood sugar only went as high as 10.1 and I was delighted it had returned to normal by bed time.  Maybe a few days plant based diet has already had an impact? I don't know, I'm not medical, but it seems a good indication.  It's a shame my stomach complained like mad about the brownie, it was growling and upset for 24 hours afterwards.

Stomach problems can be huge in the transplant community.  The medication we take is so destructive that a lot of us end up on a drug to protect the stomach lining; I take Lanzoprazole.  I have wondered recently whether there is damage to my stomach as I am more easily irritated by foods if I eat too much, or if I add in something new.  Over the last 2-3 years, every meal I ate ended with my stomach growling for a few hours afterwards and actually being quite uncomfortable at times.  I've had issues with digestion since the transplant, which occasionally manifested itself at the most inconvenient and annoying times, but could usually be resolved by a few days of eating white bread (starch) and the gradual re-introduction of other food back into my system.  That Monday discomfort reminder was enough and I have maintained a vegan diet since then.   

If I am dairy/lactose intolerant that's a shame, as I have a bit of a cheese habit; one draw in my freezer will testify to this.  It's just as well I only paid about ¼ of the retail price, because I bought it all from Tosca on a new customer/half price deal!  To be certain whether dairy is the cause of my gestational discomfort and spiking blood sugar, I think I will put it back into my diet in a week or so and just see if my glucose levels rise and see if the same stomach problems return.  I've run out of glucose strips (packs of 50 are £29 in Boots and that lasts about 8 days), so until I hunt out a cheaper set on eBay I can't actually check.  Clouds and silver linings: if I am diagnosed as diabetic in August, maybe I can get these strips on prescription...

In the meantime: the hunt is on for a dairy replacement which is neither repellent, prohibitively expensive, nor akin to an alien life form.  I have said so many times that I am not a fan of anything that has been engineered to the nth degree and I can't tolerate soya, so this is going to be a hard ask.  I've found one company that make the brilliantly named No-Moo cheese range and they are Swiss (no shock there, then).  The biggest grumble I have about this is the fact they use vegetable oil instead of olive, or coconut, but at least it is not hydrogenated.  I scoured the list for 'iffy' ingredients when it arrived and was pleased to see I recognised everything by name and it seems to be made predominantly from water, oil and almond butter, all churned up into a patty that looks vaguely enough like cheese - turmeric is the spice/colourant used to achieve this.  You first eat with your eyes, right? 

All this said, I'm not sure about the use of carrageen (a binder extracted from seaweed), as there is some debate about whether this additive is an irritant.  Ultimately, this is an experiment to see if it tastes good.  If it does, can I replicate the item in my kitchen when I REALLY REALLY NEED to eat cheese?  At least then I will have a product that doesn't have anything weird in it at all.  Time will tell whether this concept is a delight, or a monstrosity.

Vaguely Vegan

For years rejection was the word that struck fear into my heart, literally and figuratively speaking.  In terms of transplant terror, risks went something like this:

REJECTION

INFECTION

Everything Else

Now the terror looks like this:

REJECTION

DIABETES -> KIDNEY FAILURE

INFECTION

Everything Else

After a massive dose of steroids at the beginning of my second of year of teaching (October 2005), my blood sugar rocketed and it took me weeks to stabilise it, although I managed that without the aid of medical intervention.  Ok, that's a small porky, I had one shot of insulin when I was drip-fed the Solu-medrone. By this stage we knew I only had around 35% kidney function left.  Dodgy kidneys, high blood pressure, an iffy second ticker that was starting to fur up, pre-diabetes and a truck load of scary drugs all roll together to make a pretty picture in transplant terms and I knew that the day of scoffing what I fancied was coming to an end.

Rather surprisingly, it's taken nine years to get to this stage.  I have generally looked after myself, taken my medication, eaten (reasonably) well, exercised (until recently) and just got on with things.  I think the Epstein Barr has quickened the onset, as I can't walk  much and I am not always capable of preparing food.  Then, in April of this year, I found out my glucose level had been systematically high on non-fasting bloods at Harefield over the last year - or thereabouts.  A specialist in Diabetes beckons.

With all this in mind, I have decided to try something rather radical - in the short term at least.   Over the last week I have more-or-less cut all animal products out of my diet and so far, I am shocked at the difference to my blood glucose.  Where I was scoring 8-11 every morning, I am now always below 7 now and usually it's between 5-5.5 - Normal!  I've taken my glucose reading upon waking up, two hours after breakfast, before lunch and two hours after lunch.  I've just taken it before supper tonight.  I've not had one reading today above 8.8.  It was heading up to 14, 15 quite regularly.  It seems to be dropping down a little further each day.

I know I cannot maintain this diet permanently, but I have two months before I get to the specialist for Diabetes.  Can I get a handle on this so that I can stay free of another drug?  Even if I only delay it by 6 months, that will be a bonus.

So, why Vaguely Vegan?  Well, I know it is probably not a practical lifestyle in terms of my transplant, although a plant based diet seems to currently agree with me:

• there is a huge list of things I must not eat/must avoid  
• I shouldn't really eat the vegan stock replacement item - soya (or any of the associated items) as the pain of gout is PHENOMENAL - and is linked to kidney damage/diabetes etc.
• I have to go easy on a lot of the secondary vegan replacement items - beans and pulses as they can hasten kidney damage in patients with pre-existing conditions.  Yes, you'd have to eat stacks of them, but I am playing cautiously in the traffic; this is my life I am talking about, not an inconvenience out of choice.
• I have to be careful not to overdo the Potassium, Phosphorous, salt, sugar and fat
• I'd never eat out socially again - balancing the needs of my body, with the transplant and the vegan lifestyle would be horrific.
• I'd be too stressed every time I went to mum's and it would be a nightmare for her
• The transplant team probably would not endorse such a change in my lifestyle at this stage.  I've gone some distance doing what I do.  Let's not rock the boat, eh?

What does that mean in terms of this entry?  Well, for the next two months I will be sticking to a broadly vegan menu.  Once I see my glucose level bottom out, then I will have evidence to stick under a doctor's nose.  However, if I eat some dairy by mistake or by design, or I'm handed a dinner that's meat based, then I will use it as an opportunity to see how my body reacts - I'm on a rather sharp learning curve at the moment.  I'm simply not going to prepare myself animal based meals, but what happens elsewhere is subject to debate.  Vegan at home, omni outside.  This is probably also a bit better as far as my concerns for animal welfare.

On the 10th July I face my MOT at Harefield.  I want my level down and steady by then.  I suspect I'll be advised to eat fish a couple of times a week (I think that will make me a Pescetarian, rather than just plain pesky), use butter over margarine and maintain eggs.  This information comes from overhearing other conversations in the hospital  - a little dangerous, granted, as we are all very different and then one always needs to factor in the transplant...but that said, if veganism is the ONLY way to keep my glucose down, then I will do it and the chooks will be chirping too.

NOTHING ON THIS PLANET 

makes me like the sound of:

 dialysis 

losing my sight

having a kidney transplant

amputation etc.

In the meantime, I am making a big fat chocolate brownie to take into Uni tomorrow.  You never know, it may the last one I eat.

April Austerity - Fallout 2

I really don't like cheap meat.  It's not just the taste, it's everything about the stuff.  It's not just an issue with animal welfare either.  The whole farming and food industry seems completely arse-about-face.  I do think all animals deserve a first rate quality of life, but especially so if they are ending up on our dinner plates - kindness costs little.  

Yes, I am an omnivore; I come from an Aussie family.  When mum was growing up on a farm, the animals had space, they roamed and dispatching one for dinner wasn't anywhere as inhumane as the intensive farming, shove it in a van, drive it 10hrs down the road and kill it routine that we have these days.  Slaughter on site? Would that be feasible in the UK?  or at least with in a short distance of the animal's 'home', so it doesn't have to suffer that stress and indignity.  Hmmmm.

After the animal has been dispatched, have you considered how we consume the meat?  There is no surprise that we are putting on weight and heading for a disaster zone in the UK.  The protein portion seems to have swapped places with the veg on our plates.  We used to eat predominantly veg, with a meat side.  Now you're lucky if you can see the vegetables using a microscope.  A portion of meat is the size and thickness of the palm of your hand - most omnis eat 2-3x this suggested allocation.  On my shoddy April diet, my meat intake spilled over into many, many meals, because of *that soup.  Normally, I eat meat/fish twice a week - although that's going to be harder with the whole soya/lentil/bean/dairy issue...  

So, a quick recap: bad farming, and an huge increase in protein and a drop in vegetable consumption is where we are at the moment.  Then...If you wander into any supermarket, 85% of the food on sale on there is just not food.  Ok, Ok, you can shove it in your mouth, chew on it and it'll taste great and fill a hole.  Who doesn't like a big, fat, greasy pizza?  But what is it doing to your insides?    Are you eating that, and the chocolates, crisps and cheese covered toast everyday?  Everything seems to be processed, packaged up, sent to another company, reprocessed and repacked and turned into something so alien from its original shape, colour, taste and texture that the original plant, or animal wouldn't recognise itself.  Cheese Strings?  I'm sorry, but WTF??!!  Do I eat them, or do I tie my shoes up with them?  I try very hard not to buy things in packets.  The crisps, biscuits, cakes, prepared meals etc etc are all gone - those ginger nuts with unpronounceable additives put me off.

On top of that, I am fast coming around to the idea that there is absolutely not one right diet for everyone.  I have friends who are wheat intolerant, lactose intolerant, glucose intolerant, meat averse, animal product averse, and a whole gamut of other intolerance/allergies/dislikes.  I personally can not go near grapefruit or pomegranate (no, I can't just pick bits off - what about the juice?).  I also  can't eat undercooked meat, any shellfish, undercooked egg (mayo, hollandaise sauce etc), soya (I don't tend to worry if there is a scratch of it in the packet, but don't offer me it in any bulk version (tofu, tempeh, soy, soya, miso).  I'm not supposed to eat from buffets (how long has it been sat there?), or have cold food which I have not prepared - no salads at restaurants, or at friends' houses - it's ok, I do trust you all enough to wash a lettuce leaf...and seeing as my food life is confusing enough, I tend to ignore the 'no salad' rule, based on using my eyes, knowledge of the establishment and a good old fashioned sniff-test!  I'm not supposed to have any pro-biotic stuff either.  Oh and now I remember, mushrooms only occasionally as they (like the soy) can set off gout attacks. Ouch.

So where does this leave me?  Trying to balance my wallet against the thought that I really should only be supporting organic farm produce.  I'm vaguely toying with the idea of going vegan for a couple of months - I bet most of you didn't see that coming.  It may give my body a chance to resettle the blood sugar question (there is some evidence for that).  I'm also fairly certain that the veggie/vegan friends will be rooting for the animal welfare side of things.    But then again, I am pretty certain that my transplant team will have a fit, if I decided to do this permanently.  I can't eat soya and I have to keep my consumption of 'staple' vegan foods down: beans, peas and lentils all contain Phosphorous, which can quicken my kidney damage (I only have 35% function left).  I also then have a lot of expensive cat food in the freezer (salmon!) - Harvey will be delighted :p

I think that ultimately, I'd have to keep the butter (Transplants at Harefield are not usually given margarine) for baking.  I'll probably have to have either fish or meat twice a week and I can see myself being told to maintain eggs.  However it pans out, I'd like to reduce my 'footfall' in terms of my agricultural/animal impact.

Watch this space.

The Drugs do Work - Part 1 - The Immune Suppressant

My medication regime has become more complicated as the years have gone by.  When I left Harefield in March 1989 I was on Cyclosporin.  This was the only drug I took for two years.  Yes, just that.  This was my immune-suppressant drugs.  If you have a transplant you have to take these drugs for life.  

• Yes, for life.  
• No, your body doesn't adapt to the donor organs.  
• Yes, my heart and lungs will always be foreign bodies that my immune system will try to obliterate.  
• Yes, the drugs are horrific, but they are better than the alternative.  Dying.

My Current Immune-Suppressant 

This drug is called Prograf (alternatively Tacrolimus).  I tend to call this Tac; I think a lot of us do!  I take 1mg in the morning and 1mg in the evening.  The tablet is about the size of a Tic-Tac.   This is the drug that stops my system killing off my donor organs and I have to say, I was rather skeptical that something so small was the thing that stood between me and some sort of coronary apocalypse, but it seems to do its job.  

The thing is (there's always a thing), I was advised not to eat for two hours before hand, and for an hour after taking it.   If you take your tablet at 10 am/pm, then that means no food, no orange juice, no big glasses of milk, no coke; they are all too calorific. I get away with tea and coffee, with a dash of milk and no sugar.  Oh yes, and no alcohol in these hours either.

Then there are the blood tests, which are done by 10am - usually. You can't take your medication before the blood test.  If you take your tablet at 10am and 10pm, it really means you can never have an early night.  I cheat.  I take it at 6am and 6pm (and have adopted a complicated method of wiggling my medication round to the correct time, for blood tests when I dock in at Harefield).  Unfortunately this 6am/6pm regime means  I never have a lie in that is not interrupted.

Side effects of this drug are absolutely charming and for the sake of brevity, I have included only the ones with which I suffer on and off:

• Blurred vision
• Constipation
• Cataracts
• Chest Tightness
• Cough
• Depression
• Diarrhoea
• Distension of the stomach
• Falls
• Feeling full (stomach)
• Gastrointestinal problems
• Hair overgrowth
• Hair loss
• High cholesterol
• Itching
• Joint pain
• Loss of appetite
• Mental Health problems
• Mood changes
• Muscle cramps
• Oedema
• Over-sensitvity to light
• Temperature intolerance
• Thirst
• Tinnitus
• Unexplained bruising
• Weakness
• Weight gain
• Weight loss

A lot of transplants seem to be on two immune suppressant drugs at a time.  I have only ever managed one at a time, because of horrific reactions.  When I took Azathioprine (Imuran) I developed welts and I became Neutropenic.  The Cyclosporin (Sandimunn and Neoral) wrecked my kidneys and Myfortic/MMF left me suicidal - not particularly clever, considering I fought so long to stay alive!