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.

The wait is over, time now to lose the weight

Dumbbells

Between 2006–2007 I lost six inches (15 cm) off my waist, through a combination of changing what I ate, lifting weights, and regular cycling. My motivation was to get fit in anticipation of our IVF treatment working and us having children; we now have three.

Fast forward seven years and sadly I’ve put it all back on again. A combination of being on the parent-of-twins’ sleep deprivation programme, two back injuries (from lifting babies and pushing buggies), two neck injuries (what happens when twins jump onto your head from behind), and last year’s episode of meningitis.

Back in September my GP told me not to push myself: meningitis takes it out of you. He predicted that my stamina might return in January or February of this year. Now we’re approaching the end of February I feel it’s time to start working myself a little harder. The fact that it’s Lent — traditionally a time of increased discipline — should also help.

My plan is that I’m going to start gently and gradually build up my level of fitness. My immediate ground rules are:

  • Drink more water
  • Go to bed earlier (sleep is really important)
  • No chocolate
  • No fizzy drinks
  • Lift weights (dumb bells) 2–3 times a week
  • Cycling 1–2 times a week

I have to admit to feeling a little nervous. I know that I’ve done this before, but back then I was younger and I didn’t so easily experience the back and neck pain that I can now. I’ve never really been good at pacing myself, it’s time for a crash course (I guess, without actually crashing).

I’ll report back with my progress.

This too shall pass…

Raindrops on a window
Source: iStock

Day 71

Three weeks ago I went to the health centre for an appointment with the GP who recognised that the headache I was experiencing wasn’t just a prolonged migraine but meningitis.

I was there for two reasons: I needed to be signed off for longer, and I needed painkillers that were stronger than ibuprofen but milder than the 30/500 co-codamol that were playing havoc with my stomach.

The GP was really kind and understanding. He signed me off for a further four weeks, gave me the prescription I needed, but also gave me some gentle advice: pace myself. He reminded me that viral meningitis, though not as dangerous as the bacterial variety, is still a pretty serious condition.

“Even if you’re having a good day,” he advised, “don’t try to run 100 metres in ten seconds! Pace yourself.”

Then he said something that really shocked me. “I expect you won’t be back to full stamina for probably 4–6 months.”

Not four to six weeks… months!

When I stepped out of the health centre I burst into tears. At that point, I’d been going for six weeks, trying my hardest to stay positive. Trying to will myself to be well. During those six days in hospital I had been the most afraid I’d ever been, and when I was discharged nothing had physically changed. All I had now was a label to affix to it: ‘viral meningitis’.

It’s common for someone with any kind of prolonged illness to experience a kind of grief reaction, a response to the loss of a more ideal self. It cycles randomly through familiar ‘stages’: shock, denial, anger, depression, defensive compensation, acceptance, and adjustment.

This past week, these last seven days, I encountered ‘depression’. I have felt so low. But like the weather, I know that this too shall pass.

This too shall pass, but at the moment I’m feeling quite isolated.The headache began two months and nine days ago, and apart from a few visits to hospital I’ve not been out of the house very much, and I’ve had three visitors.

I’ve tried to find a rhythm to the day to positively get me through this lethargy and sense of loss. At the moments mornings are better than afternoons, when I physically crash and sleep between lunchtime and when the older boys return from school. During the evenings I pick up a little, but I’m not particularly enjoying these shortening days. I now have four lamps in my study, with the brightest LED and low-energy bulbs that I can find.

As my eyesight improves at its glacial pace, reading and writing have become easier. So I tend to spend the early part of each morning—once the breakfast dishes have been cleared away, washing put on and beds made—in prayer and reading. And then, usually before the headache grips me, I get some writing in; I’ve enjoyed blogging regularly again.

The children have been brilliant. Their hugs and laughter have really lifted me through this week. Quite unbeknown to them, I’m sure… although I do tell them.

That’s where I am just now. It’s been a bit of a slog, but I’ll get there.

Recovery, a dinner party, and a lot of sleeping

R2-D2 cake by Jane Bakes Great...
R2-D2 cake by Jane Bakes Great…

On Friday evening I managed to escape the house for the first time in weeks when Jane and I attended our friend Andrew’s 40th birthday (dinner) party near Stirling. It was great to be out of my bed and amongst friends for an evening; although I am paying for it now in terms of energy.

Recovery

It’s now nearly eight weeks since I came down with viral meningitis which affected my eyesight very badly and landed me in hospital for six days.

My recovery has been slow but generally steady. I’ve been back and forth to Victoria hospital for various ophthalmology tests and at the last appointment I had with the consultant she was satisfied that my eyesight issues were related to the meningitis and that I should continue to see steady progress.

I saw the GP last week too who gave me new painkillers for the ongoing headaches, which he thinks are partly related to the meningitis and partly to do with the eyesight issues.

What I’ve been doing

One of my work colleagues asked me on the phone last week what I’ve been up to while off sick. The first couple of weeks I spent mostly sleeping. My energy levels were in my boots, and my eyesight was so awful I couldn’t read, so I mostly lay in bed listening to Chain Reaction interviews on BBC iPlayer Radio on demand.

During the next few weeks, as my strength grew and my eyesight improved a little I pottered around the house tidying. The house is now the tidiest it’s been for probably years. I’m now turning my attention gently towards the shed and the garden before winter overtakes the lawn.

Of course, some days I’ve over-done-it a little, as I try to find what I’m capable of. Usually, I’ve been able to sleep it off the next day.

I’ve also spent a lot of time with my three boys, Reuben (5), Joshua (5) and Isaac (3) which has been fun. Exhausting at times but definitely great fun and nice just to hang out, be silly, and bond.

What I’ve not been doing

Because of my eyesight issues (unable to focus properly, flashing images, double vision, and blind spots) I’ve not been able to read very much. I love to read, and with so much time available it’s been quite frustrating not to lose myself in a book. If nothing else this experience is teaching me to be patient.

My phone has been quite a lifeline, and even at the height of my eyesight issues I was able to make out words on my smartphone if I held it very close to my face, and closed my right eye. Ironically, it was only as my eyesight was improving that I discovered the Android accessibility tools.

I’ve not been on my computer as much as I normally would, either. Again, this has been linked to my eyesight issues. About a month ago I was able to use my computer only if I either reduced the screen resolution (how many pixels you can see on the screen at once) from 1920 x 1080 to 1024 x 700, or if I used the Windows built-in screen accessibility tools and zoomed everything to 300%.

It’s been a bit easier to use my PC over the last couple of weeks but my eyes get really tired more quickly, and I suspect that also affects the headaches.

I did manage to move my email to Gmail, though, which felt like a massive success, given the circumstances.

And I’ve not been able to cycle, which has been disappointing. We’ve had some beautifully clear days. I love to cycle in the early autumn when the air is clear and dry but the temperature is lower and the roads are not yet strewn with fallen leaves.

I have been trying to get out for a walk every few days though, and gently build up some stamina. Although my GP told me last week that he expects it will take me 4–6 months before I’m fully fit.

And so to last weekend…

Thanks to Jane’s parents and younger sister we were able to get away for an evening and overnight stay to attend our friend Andrew’s 40th birthday gathering near Stirling (about a 90 minutes’ drive from Anstruther).

It was great to be out of the house and not going to a hospital appointment. It was great to be amongst friends, for some fun chat and silliness, and to eat Jane’s delicious R2‑D2 cake (photo above) that she’d made for him.

We stayed the night in the nearby Dunblane Hydro, where I spent an uncomfortable and largely sleepless night, and in the morning we invited another friend, Rich, over to join us for breakfast.

When I got home I felt exhausted but happy. It had been a good 24 hours.

And today… well, today I mostly slept.