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 - Ditching Diabetes

So, it's now the week before my MOT at Harefield Hospital and I have just started recording my blood glucose results to take with me; I am hoping to see a change on the last time I did this.  For those of you who like numbers, consider these figures below.  

This first of set of glucose readings are my average results over a week, on my 'old/normal' diet.  

Before Breakfast: 8.8

2hrs After: 12.6 

Before Lunch: 9.5 

2 hrs After: 16.2 

Before Dinner: 10.1

2 hrs After: 15.4 

Bed Time: 13.2

The fasting glucose reading should be about 5 and healthy seems to be under 8, although if you are Diabetes Type Two, then up to 8.5 is acceptable.  You can see, they were all awful.

The second set of results are the average results over a week, after three weeks of being vegan - yes, the first two weeks were a bit hit and miss, but that was me getting used to things.

Before Breakfast: 5

2hrs After: 8.5

Before Lunch: 8

2 hrs After:14.3

Before Dinner: 8.2

2 hrs After: 10.8

Bed Time: 7.4

The lunch time spike happens six hours after I take my steroids (DAMN YOU PREDNISOLONE!).  I am not sure that I will ever be able to correct that, because I have to take the stuff, like it or not.  Back to yesterday's post; this is the point I tell myself that I like the drug as it supports my lungs - even if it makes my face puffy.

Anyway, just to prove that I am not completely barking mad and that this was not an idea I randomly plucked out the sky, here's a link to watch that explains the thinking behind my experiment - courtesy of a friend who messaged the video to me yesterday.  

http://www.myfoxhouston.com/Clip/10320937/correlation-between-meat-and-diabetes#.U7Mg1LbjYQ8.facebook

It was not this film which made me consider a dietary change, but I didn't want to bore you all to death with some of the things I have been reading.  In a nutshell; in some large-group studies it has been noted that people on high saturated fat diets (meats and dairy - not just meat as suggested in the video), who were already insulin resistant were more prone to Diabetes, high blood pressure, high cholesterol and Kidney Disease.  I have all four; I ate meat and dairy products.  The people in the studies, who were placed on a plant-based diet, managed a significant improvement in their blood glucose results.  I am seeing an improvement in mine; I'll have to wait until next Thursday to see if the other results have improved - or not.

It's an American clip so that means it may not be what your doctor over here in Blighty would prescribe.  I am also not suggesting anyone changes their diet!  You have to eat what is right for your body, but I am fast coming round to the idea that as far as food is concerned, one size does not fit all, but I'll come back to that another day.

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 - Testing Times

I assume you know that feeling when you try to do something and nothing goes right?  Well, after the concerns that I could be diabetic, I thought I ought to get my finger-pricker kit out again.  I last had to keep an eye on my blood sugar in 2007 when I was being drip fed a truck load of steroids.  I found my monitor.  The battery was flat.  I bought the batteries; the test strips were out of date.  I bought new test strips; the insert was missing.. AARRGGHHHH.

Well, finally today, I had all the working parts together and after eating less than healthily I thought I ought to see what was going on: 5.8. That's fine.  What's happened?  I have no idea.  For the last seven years my blood sugar has been ok in the morning and then climbed steadily throughout the day, to return to the morning. So why, ¾ the way through the day is it suddenly normal?  My suspicion is that my diet has changed slightly.

I'm eating more regularly, because you have too when resources have to be counted out.  I've definitely reduced the amount of fruit that I used to eat.  My starch intake has increased, as I am eating rice, bread, or pasta with most of my meals.  My junk food consumption has dropped; well, sort of...  I made scones twice and I've eaten flapjack...then there was the Easter Egg from Carla.  Yes, that lasted 3 days.  Ooops.  I'm eating less veg.   Then, about ten days ago, the potatoes ran out (I finished my supply, they didn't charge out of the front door).  I've always been a bit suspicious that potato was my arch enemy when it came to my blood sugar.  I'll have to run a bit of an experiment, after this one is over.  

T minus four days and counting.

What if the reduced fund diet is the thing that has sorted out my blood sugar?  Hmmm, Harefield said that I'd be unlikely to make any difference to my blood sugar, because of the medication that I take. I guess I shouldn't get too excited about one reading.  I bet the monitor is faulty...

April Austerity and Medical Malfunctions

Those of you who know me well enough, will also know well enough that I have a few dietary restrictions.  I think it's about to become a whole world more complicated.

Currently I avoid the following items:

• Grapefruit - this one is a case of 'come hell, or high water'
• Pomegranate 
• Shellfish
• Undercooked meat/fish - no rare steak etc
• Undercooked eggs - anything from boiled eggs to Hollandaise Sauce!
• Buffets - hot, or cold - bacterial growth
• Any 'natural remedies' such as St John's Wort, incase of interactions with my immune-suppressants

I am supposed to avoid the following, but the occasional brush with them would be ok, in terms of the transplant team:

• Cold food in restaurants and at a friend's house, or with family (so that means I am not supposed to eat salads etc outside of my own home - although I do trust my friends to wash a lettuce thoroughly...)
• Soy 

Consume very occasionally

• Deli meats
• Pies/Pastries
• Crisps, biscuits, cakes etc - The usual junk food

Harefield's dieticians generally recommend a lower fat, salt, sugar, calorie diet, tell you to eat your fruit and veg (1 fruit, 5-6 veg) and throughout the last 26 years I have managed to maintain my weight, for most of the time.  I had a 4yr weight problem, just after a major rejection, when I was 11 years out.  Since I got the weight off (11yrs ago), I've maintained myself consistently between 44-47.5kg.  My target weight is 45kg.  My eating regime is not 'that bad'; it's not perfect, I do like chocolate digestives, crisps and home baked goodies, but I do eat a lot of the good stuff.

Unfortunately, on Thursday I was told that the inevitable had probably happened; I've more or less ceased to produce insulin, my blood sugar was up high (non-fasting bloods) - I'm now awaiting an appointment to see a local Diabetic doctor.  Hmmm - in case that is not clear, I am waiting to see a doctor who specialises in Diabetes - not a doctor who has the condition ;)

As an aside, I have never understood why Diabetes is called a disease.  It's not something you catch, like Malaria - it's something you acquire; it's a condition.  In my case, the immune-suppressant drugs have mucked up my body's ability to produce its own Insulin.  A change in diet is not going to make this go away; I won't suddenly start making more of the stuff.  I can only eat to try and stop the blood sugar spiking quite so rapidly.  To complicate matters further, I have a raft of other major medical malfunctions that all come with their own food rules and regulations: some example include high blood pressure, arteriosclerosis (furry arteries), Osteoporosis and it also looks like I have Rheumatoid Arthritis - again waiting to see a doctor.

On the plus side, because this has been a long time coming, I have already started making adaptions to my cooking.  A few examples:

• I tend to use plain yogurt for sauces, instead of mayonnaise (or cream) - but I haven't been able to afford it this month.  
• I grate cheese and therefore need to use less of it
• In scone, or cake baking I've switched 50% of the flour over to ground almonds
• When I make flapjack, I halve the sugar content and add almond flour, mixed seeds and nuts and some fried fruit 

Years ago, being diabetic meant NO SUGAR!  Now it means following a diet, in which you eat predominantly from a set of foods that register as low on the Glycemic Index.  Sugar, in small quantities, is back on the diabetic table...but we should all be watching our sugar intake anyway!  Just in the same way that 20 years ago we were told to watch our salt intake.

The problem for me now in April, is that massive batch of soup that I made at the weekend.  High on the Glycemic Index are swedes, parsnips and potato.  Aside from the fact that I have been eating the stuff for three, or four, days straight and I am BORED OUT OF MY TINY LITTLE MIND, can I now 'afford' to eat the rest that is sat in my fridge, in terms of the probable Diabetes?  In terms of April,  I can't afford to chuck it out, or give it away!  If you were on £10 a week for food and suddenly had to change your diet, you'd have a problem.

The reality of the situation is that whilst I don't have the diagnoses and I am still 'healthy' (in terms of Diabetes), I can probably still eat the stuff. I have one bowl left for tonight and 8 servings in the freezer.  I'll just have to space them out - that should also help save my sanity...

In any case, I guess if I do decide I am not eating any more of the soup, there is always a willing volunteer to help me out.