Tuesday 23 October 2012

A Hope For Hope


I had always been extremely strong, fit and healthy. I bounced back from bugs and minor illnesses. I was like that for my entire childhood and early adult life.

I have to admit something; my nickname for Jo is 'The Afterbirth'! 

You know, because I was born fit, well and first and she came out after me and was poorly. Now, anyone who knows Jo and me will know that we have a pretty disgraceful sense of humour and my vile name calling is both given and received with love. Jo, more than anyone, knows this.

If you don't know us personally, I understand if you are shocked, disgusted and appalled at my nickname for my poor sister.

Anyway, karma came and bit me on the bum in the summer of 2003. I contracted a weird virus and it literally put me firmly on my backside. I couldn't move and was pretty much bed bound for several months.

The length of time that I felt unwell for surprised, frustrated and scared me. Why wasn't I bouncing back?

Although, the severity of things decreased, I just couldn't get back to my former, healthy self. Anything strenuous completely wiped me out and I ached all over constantly.

It took several visits to doctors, both NHS and private, before I saw a fantastic professor of rheumatology on the NHS in 2005 who diagnosed me with fibromyalgia.

To be honest, I just accepted it and went on with my life. I was no longer able to exercise but I was okay. I even thought that it might be a sign of me getting a bit older (I was 27).

Things remained as they were until 2008 when I developed other symptoms which put me back down on my backside. I won't bore you with the details but I became so ill that I had to give up my beloved job and spent the next few years trying to adjust to having such huge limitations.

As my newly acquired symptoms were not consistent with fibromyalgia, the doctors were scratching their heads and I ended up seeing specialists in three different areas of medicine where I was tested for a range of extremely scary and downright weird illnesses.

It was at this point that I was diagnosed with undifferentiated connective tissue disease.

This was what was of such a concern to the transplant team when I asked them to consider me as a donor and was, ultimately, the reason for their refusal to allow me to donate my kidney to Jo.

As I have mentioned before, both Jo and I were devastated. However, we tried to accept the decision and I began writing this blog.

I just felt like I needed to do something, anything I could to get my baby sister better.

On the day before the transplant team had their meeting to decide about me donating, my bloods were taken and Jo and I later found out I am an absolutely perfect match.

Imagine that, if you can. 

My weird 'extra' symptoms have been very quiet for some time now and I was aware that my most recent blood work results were about two years old so I spoke to my doctor who agreed that it was worth me seeing the rheumatologist again to see how things were looking.


On 25 September, I went back to rheumatology and had a great appointment with a doctor I hadn't seen before. I had all of the usual bloods and examinations carried out.

On 4 October, I received a letter confirming that all of my bloods are normal and that there is no evidence of any connective tissue disease and vasculitis (that's another weird one).

My diagnosis is simply fibromyalgia (although most people with it will not say it's a simple disease).

Although it's a pain in the neck, and the arse and the back and, well, the everything, I am over the moon.

It means that the transplant team have agreed to reconsider me as a donor for Jo.

The meeting with the experts will take place tomorrow (Wednesday 24 October) and Jo and I would be grateful if you could please send hope and positive wishes our way.

Three potential donors have been tested since we started searching and none of them match.

We are aware that finding a match is like finding the proverbial needle in a haystack which is why tomorrow is such an important day.

I have never wanted anything more in my life. I am carrying the answer to my sister's problems inside me and I just want to help her. My heart breaks for her every day.


I'm crying now so I am going to stop typing. 

I'll update about the outcome of the meeting as soon as we have heard. 

Jude x


Don't forget, you can join the national register for living donors online or by calling 0300 123 23 23.

Remember that Jo's story is just one of over 7,000 in the UK alone. Please consider donating a kidney to someone. You will change their life.