Sunday, April 11, 2010

Feeling Concerned

From the very first moment the word 'transplant' was uttered as a potential option for William, we were told that no transplant comes without complications and that it isn't a golden cure. Living with a transplanted organ, especially one as complex as the bowel, is a chronic health condition in its own right. William depends on a daily cocktail of medications to keep him alive and we were told there would be times when things don't go as well as others. William had a lot of early complications and his bowel took a while to get working properly but, once it kicked in, we never really looked back. We had the odd little bumpy day but nothing too worrying. The main concern was always William's stoma. He has no colon so has an illeostomy, where the bowel comes through the skin to enable waste to drain into a bag. William's stoma has been prolapsed for over a year. The bowel is an internal organ and wasn't designed to hang out of a lively five year old and so it began to get damaged. We knew it would need fixing sooner or later and, last week, that time came.

William and I have been back in Birmingham for the last week. He now has a very tiny discrete little stoma which is fantastic. All went well. William is sore and tired but that is to be expected. The bowel hates being handled. At first it pulls a total strop and doesn't work at all. Then it pours. William's bowel is at the pouring stage at the moment. I have been reassured by our team that it will settle but it is hard to relax when you've been there before and it didn't improve. Old memories are hard to ignore. I'll be relieved when things start to normalise again. William is hundreds of times better now than before transplant - a different child! The little set backs are worrying though as you are never totally sure they won't lead to anything more. We've been so lucky over the last year as Wills has been so very well and stable. We've got used to it and it's upsetting to see him a little more vulnerable than he has been. Some of the friends we've made over the last couple of years are facing much bigger hurdles and complications and they are very much in my thoughts now. This is nothing compared to what they have to get through.

It is fantastic to be home from hospital but I do tend to feel a little nervous whenever we come back with things a little bit different and some recovery still to be done. I think it feels even more scary when there is just one of you. I do call Paul to sound things out when I'm concerned about Wills but the decisions and responsibilities totally rest on my shoulders now and I have to juggle the girls' needs in there too. It's not always easy. I find the practical things are easier on my own. I have a routine and, although school mornings are a bit frazzled, it works. The emotional worry can be hard though. At the end of the evening, it's just me and there is a lot of time and space to brood. The girls have been at Mum and Dad's and are now off to their own Dad's for a week so a little concern over Wills is coinciding with a lot of quiet evenings.

This blog has talked a lot about post transplant complications and worries. These are all normal and part of the journey. It is a journey and one that would not have been possible without our wonderful donor and her family who said yes when asked during the darkest time in their life if they would be willing to save other people's lives. Had they not have said yes, we wouldn't have had a transplant and a William to be worried about. I was very distressed today to read this Of course, my heart goes out to anyone who may have agreed to donate all of their precious loved one's organs and are now being told there were specific organs their relations didn't want to donate. I am truly very sad for them. However, these numbers are tiny and it is a specific administrative problem that has now come to light and is being sorted. I think the reports have been blown up out of proportion by those who are rubbing their hands with glee at the thought of being able to try and blame the government for something so upsetting and emotive. To anyone using this situation as a part of their election campaign, I want to say how worried I am about their tactics. There are 10 000 people on transplant waiting lists. Of those, 1000 die each year - 3 a day! The way this report has been reported has created a real danger of putting people off registering as an organ donors. Going on to use it to undermine the work the present government has done in promoting organ donation is only increasing this danger. This issue is not something that I feel should be bought into the negative campaigning the Tories and their supporting papers are doing. If people are deterred from joining the organ donor register or saying yes if asked about donating their loved one's organs then people will die. The lovely Tor is on GMTV at 6.45 tomorrow morning to talk about her wait for a double lung transplant and do her best to make sure this doesn't happen. Please tell your friends about her. Tell them about William who is only here because of our wonderful donor. Tell the how grateful we are and how we think of her and her family every single day. Tell people not to be put off from saving lives if they or their loved one's were to die and ask them to sign the register. A lot of people are very upset and worried about the impact of this report. Please help me to show them they don't need to be.

1 comment:

Jill Marie, Angela and Mindi said...

Thanks for posting. I will pray for William and your family. I hope things begin to get back to normal soon.