Why I decided to SHARE my blood for medical research

The word share surrounding by multi-coloured speech bubbles

Although I attend clinics at Ninewells Hospital in Dundee on a regular basis, on account of my having inherited autosomal dominant polycystic kidney (ADPKD) disease from my dad, the last time I visited Ninewells Hospital in Dundee was when I accompanied a really close friend to her clinic appointment.

While I was waiting for her to finish, I got chatting to a woman in the waiting room who turned out to be a coordinator for SHARE. She told me about the scheme and I signed up straight away.

What is SHARE?

SHARE, the Scottish Health Research Register, is a new NHS Research Scotland initiative created to establish a register of people interested in participating in health research.

When you sign up for SHARE you agree to allowing them to use coded data in their various NHS computer records to check whether you might be suitable for health research studies.

One example is in allowing SHARE to use any leftover blood following routine clinical testing.

This can be incredibly useful when it comes to developing new tests, treatments and cures for a wide variety of health conditions.

Why I joined

Every time I visit the renal clinic—currently every six to nine months—I have blood taken to check my kidney function. They can’t possibly use it all when they do their tests, so I thought it sensible to give permission for my leftover blood to be used for research purposes.

As I write, there are currently 177,848 people registered.

You can find out more on the Register for SHARE website from NHS Scotland.

 

Getting fit again (and hey! so far I’ve lost 6 kg)

Six bags of sugar. This is how much weight I've lost in the last five months
This is how much weight I’ve lost in the last five months

On Friday afternoon I attended my bi-annual renal outpatients’ clinic at Ninewells hospital in Dundee. My appointments usually follow the same script.

Doctor: Hello, come in, sit down… how are you?

Me: Fine, thanks.

Doctor: Good. How have your kidneys been over the last six months? Any problems?

Me: Fine, no problems.

Doctor: Your blood pressure is a bit high, but you’ve probably been rushing to get here. Let’s take it again… Hmm… still a bit high. You’ve put on more weight, I see. You really need to lose weight. That will help with your blood pressure.

And off I’m sent with a slap on the wrist, a ticket to get my bloods taken, and an appointment for six months’ time.

Change of script

Well, dear reader, not this time. This time we had a change of script. I was in and out in about five minutes. No reprimand, my blood pressure was looking good, just a a request for bloods and to return in not six but nine months’ time (always a good sign when they don’t want to see you quite as soon).

The reason: over the last five months I have been exercising. A lot. And yesterday afternoon I discovered just now much weight I’ve lost: 6 kilogrammes (13.2 lbs).

I knew it must have been quite a bit: I am now back into my XXL t-shirts, and my 38″ jeans.

The last seven years have been in many ways the most brutal, the more difficult that I’ve ever experienced:

  • sleep deprivation (twins and then singleton) for about four or five years
  • two back injuries
  • two neck injuries
  • viral meningitis

Whenever I did exercise (walking, cycling or light dumbbell weights) invariably I’d get ill pretty quickly, within a few days I’d come down with someone, or I’d overdo it and pick up an injury.

And with a regular pattern like that comes fear. And so I ended up avoiding exercise because I didn’t want to get ill.

In June of this year I knew that something had to change. I was experiencing major headaches again, comparable with the ones I had experienced during last year’s meningitis. I knew that I’d put on more weight, I was already in XXXL t-shirts and these were beginning to feel a little tight. I was feeling so unfit and so ashamed of my size that I knew that I had to do something about it. It actually got so bad that I felt I couldn’t even look at myself in the mirror.

I knew that I could do it, I’d done it before, after I’d moved from Edinburgh to Fife. I just wished that I had written down what I’d done so that I could do it again.

So I committed to the following:

  • Eat less (especially, cut out unnecessary  sugars and sweets).
  • Cycle more.
  • Lift weights more.

With the exercise I committed myself to a little, often. And with that I got on my bike and tackled a familiar circuit that I used to do: home to Kilrenny, up the farm track to the main road, then back home. I knew that it would take me about 13 minutes to reach the top of the farm track, up a gently hill, and about 26 minutes to complete the loop and get back home.

A few weeks in, I started lifting weights again. A little and often. Squats, preacher curls, bench presses. I hit major muscle groups. I followed a couple of Men’s Health dumbbell guides that I’d collected over the years.

Then I went back out on my bike, and was amazed that I could go significantly faster. The weight lifting had given my legs strength. Who knew?!

Night rider

The clocks changed and I continued to go out in the dark. I have fabulously powerful LED bike lights that illuminate the road ahead. And that’s when I realised that one of my biggest enemies, one of the things that had been holding me back, was myself.

When I cycle during the day and hit the bottom of a climb there is a small, nagging voice in the back of my mind that says, “You’ll never make that climb!” And coupled with the fear of getting ill, or pulling an injury, my brain gives in and replies, “Yeah… you’re probably right”, and I slow down and don’t push myself quite as much.

But at night… at night I can’t see the top of the hill. And so I don’t hear the nagging voices. I’m in the moment, and I just keep going, until I find the top of the hill.

So, I set myself a goal: get from my house to the top of the hill in under 10 minutes. A week in to my challenge I got it down to 10′ 52″.

I then realised that I was taking it too easy getting from my home to the bottom of the hill, so a couple of weeks ago I set out with the attitude of going for broke.

I pushed myself harder than I had in a long time, through the pain, up the hill, pulling on my pedals when pushing hurt too much, pushing when that started to ache.

At the top of the hill I slumped over the handlebars, out of breath, my heartbeat in my ears, sweat turning to steam in the cool night air.

I unclipped my bike computer and held it in front of my front light. Five minutes fifty-six seconds. What?! 5′ 56″.

Well… that’s under 10 minutes.

Onwards…

The next year or two are going to contain a lot of changes, big and small. Some I will have little control over, others I will grasp with two hands. This is one of them. I’m getting back on track (metaphorically and literally), getting fit and regaining my confidence.

Yesterday’s renal appointment was a significant milestone. Let’s see just how much fitter I can be in nine months’ time when I present myself to the clinic once again.

Isaac and Jane are home

Baby Isaac asleep in his cot in the living room
Baby Isaac asleep in his cot in the living room

This morning I dropped off Reuben and Joshua at their grannie’s house, the plan being that I’d drive up to Dundee to the hospital to spend some time with Jane and Isaac before grannie brought them up later at visiting time.

I arrived on the ward just after 11:00 to discover that they were keen that Jane gets home today. Quick change of plan, followed by a long six hours wait until various physical checks to Isaac and Jane and whatever items of paper work were completed.

We drove away from Ninewells Hospital at 16:45 feeling decidedly less nervous than when we had made the same journey 26 months before. This time we didn’t even stop in St Andrews to see if he was breathing!

Thank you

Thank you so much to everyone who has sent, emailed, Tweeted, ‘Facebooked’, voice mailed messages of congratulations, and for everyone who has prayed for us and kept us in their thoughts. We love you all. x

Baby #3 – 20 weeks scan

Ultrasound image of baby #3 at 21 weeks
Ultrasound image of baby #3 at 21 weeks

Today marked the start of the 21st week of Jane’s pregnancy. This morning we drove up to Ninewells hospital in Dundee for Jane’s 20 weeks ultrasound scan.

As you can see from the image above baby #3 (whom we discovered will be a brother to Reuben and Joshua: he’s a boy!) was facing down for the duration of the scan. We didn’t get a good look at his face sadly, but he appears to be doing really well the little miracle that he is.

Reuben and Joshua, who accompanied us to the appointment, were delighted to see and point at “BABY!” on the computer monitor.

Getting ready

This weekend it’s going to be my task to dismantle the bunk beds in the second guest bedroom in order to create nursery #2.  We’ve scoped out a programme of work to get things ready between now and the end of November.

Baby #3 is due to make an appearance on 27 January 2011.