Vaguely Vegan - Caffeine Conundrum

So I ended up eating beef, when I went out with a friend the other day.  There was NOTHING on the menu that I could eat, given my restrictions and my current lifestyle choice, but that lunch has served as an interesting experiment.  Well, I am the sort of oddball that finds blood sugar reactions interesting.   I should have done Science this time round at uni; maybe I'll take it up after my current interests have expired.

Anyway, I digress.  I'd been having some very nice glucose levels recently and then I ate *that beef.  Hmmm. It's taken me since Thursday to bring the spike in reading down from 13 to 9.  Let me be absolutely clear about this.  I now wake up with a reading of around 5; after brekkie I am under 7, by lunch time I am usually around 10 and then with a big gap until dinner, I am usually back around the 7, or 8 mark when I go to bed.  It's still not good enough, but the 13 I scored on Thursday was a bit of a shock.

On top of this, I've kind of given up caffeine.  Those that know me, know 'I drink tea, therefore I am'.  I had a coffee yesterday morning and since then, it has been water all the way.  I am not sure how much difference this may make, but dehydration can cause glucose levels to rise and tea is a diuretic.  The odd thing is that I haven't missed it - not in the slightest.  I suspect this will change at some point and I know I will have another cuppa, but it is odd.  Maybe the three litres of water that I am now consumming each day are actually doing the job!?

In a nutshell, I am now seem to sticking to this vegan thing and I am avoiding caffeine (chocolate is not disqualified yet). If I don't have glowing skin, a flat stomach and a healthy blood sugar by the end of the summer, I am going to want a refund.

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.

April Austerity - Fallout 4

Last month I started growing one lonely lettuce stalk on the ledge in the lounge.  I now have three of them, a regrown bunch of spring onions and a cabbage.  The latter is interesting.  As all the other veggies have sprouted upwards from the centre without growing any roots, I was expecting the cabbage to do just that.  It hasn't obliged.  The cabbage has developed from the gaps between the leaves of the original stalk; I have 5-6 new growths and a load lot of roots.  I am actually considering buying some compost and seeing if I can separate the new plants and grow them individually.

I think there is a difference in how lettuce may grow, according to how the stem is cut.  The two by themselves (in the middle pot) seem to be opening up, whereas the third lettuce (left hand side, right hand pot) seems to look more like its original shape.  I *think that is the one that I managed to cut dead flat across.  Mum's said she may get me one of those put-me-up plastic greenhouses for the garden to see if I can grow veggies in there.  She's already bought me a rosemary plant and a tomato plant.

Continuing with a veggie theme, if you ever open up the fridge and find vegetables that look as if they have had a night out (bendy and beyond their best), have you tried standing them in water, in the fridge for a few hours?  Carrots, cabbage, broccoli and a few others all seem to gain a bit of ompf back after a little TLC.  Sad lettuce?  Peel off the leaves and plunge them in ice cold water for 20 minutes!

Finally, the fun and games with Tosca continue.  Below is this week's shop: £21 worth of stock for £10.50 - give or take a few pennies.

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.