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?

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.

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!