Day Forty-Two

1. 146 lives that could well have been saved!

The end of another week and William has now been waiting six weeks for his liver and bowel re-transplant. This is exactly half the time we spent waiting for his first intestinal transplant. A staggering 146 people have now died waiting for a transplant since we joined them on the list.

The main concept behind this blog is to raise awareness of organ donation and highlight that three people die a day waiting for organ donors in the UK. Several people have been in touch to tell me they have joined the organ donor register as a direct response to reading this blog and following our journey. That makes me so happy because these people could become life savers. If you are not on the organ donor register, please consider signing up today and do let me know if you do.

2. One heck of a stressful day!

I had great plans today and they all centred around having a relaxing and peaceful day and resettling and focusing my mind back on my writing, my spirituality and my positivity as I had been left feeling somewhat rattled and out of sorts from William’s transplant anniversary. What do they say about great plans?? My phone went in the morning to say someone in William’s class may have chickenpox. Chickenpox is a huge deal to transplant patients. It can be very dangerous to people who are immunosuppressed. William has no immunity to it whatsoever and so needs a VZig injection to boost his immunity against it whenever he comes into contact. This is the thing he hates and dreads the most out of absolutely everything he has to go through on this transplant journey. It is a very painful 5ml injection into the muscle on his leg and Wills says it stings so much it is more painful than the transplant itself! My heart sank as I began phoning round to get things arranged. But there was more stress to come!

If this was chickenpox, William would have to be suspended from the transplant list for the full incubation period of 21 days! Three weeks off the transplant list! Three weeks when that rare and precious blood and antibody match could be found. I was told I needed to find out for sure if it was chickenpox but that is not easy when you need to convince parents that they have to take their child home from school and get checked when the benefit is for someone else! I felt awful but it had to be done or Wills could have been suspended for nothing while we waited to see if the child recovered over the weekend. Thankfully, the parents did understand and called their doctor. They also let the school know at the end of the afternoon that the spots had all gone! All was well but it opened my eyes to a situation I had not thought of till now, that Wills could be suspended because of contact to viruses! You can’t just wrap the child in cotton wool at home but it is very tempting.

So much for chilling out and getting myself reconnected and refocused today! I feel more frazzled than ever. I was also planning to write a poem or two to share but no chance with all the endless calls and stress going on. Wills is with his dad for the night so I am off for a drink with a friend. I’m sure this will help ground me again.

3. Watch this space.... 

And so…my final piece of writing will come later tonight so do come back and see what that is. I can’t give you any hints as I have no idea myself!