We always have Hope.....
I guess I'd seen renal transplant patients during my nursing career as an adult nurse in Exeter and a paediatric nurse in Bristol and I thought some of the patients looked pretty rubbish , unwell really even a few years post transplant. So when the word transplant was used regarding my own daughter I freaked a little, thinking of the steroidal faces complete with nasogastric feeding tube of the ill looking renal transplantees. I know, I know, I'm probably homing into a minority group and most of the kidney recipients were fine but I guess worse case scenarios stay with you. I really didn't know if I wanted Eloise to be transplanted, what was the point ? What was I signing up for ? But as your child continues to struggle to survive against the odds you owe them not to give up either, so second opinions are sought, referral to a specialist transplant centre made.
We arrived in Newcastle, straight away our assessment to see if we could cope with a transplanted child emotionally begins. I guess that's the hard bit you are literally bombarded with information, so much to take in, survival statistics, complications for something that might not even happen. It doesn't matter how much you need or want a transplant for yourself or a loved one someone has to consent to their loved one being an organ donor. The donor has to be a match for you in blood group, size, antibodies, CMV status etc not the other 263 people who are also currently listed in the UK and your clinical need the greatest if the organ is suitable for more than one person. When you think about it, it's incredible to think a transplant ever goes ahead but thankfully they do. I was asked pre transplant whether I wanted to meet the family of a boy who was recently transplanted and about to be discharged home. I declined. Maybe I should have said yes but just because I wanted Eloise to have the same chance as him it didn't mean it would happen.
I cannot imagine how bloody tough it must be waiting for a transplant . Eloise arrived in Newcastle on the 5th of June over the next couple of days she was assessed but due to a line infection not listed. Then on the 9th of June a heart became available for her and she was transplanted on the 10th. So no wait at all just 24 hours on the top of the urgent European transplant list. Things are a little different in the heart transplant world now as there are mechanical hearts and devices to bridge people to transplant. Lvad's, bivads, Heartware and Berlin hearts to name a few, these weren't available 12 years ago. So people are able to "live" and wait longer. Some of my friends with children have waited in hospital for 9 months, separated from their other children, partner and friends. Life and living like that is tough, it's not normal, it's relentless , draining, depressing but you have no choice, just the hope your child's call comes.
Eloise was lucky her call came at just the right time, she escaped the ECMO machine and the complications that being on one of those can bring. Eloise's recovery was quite a stable one, pretty text book recovery heart transplant wise. No complications, off the ventilator, wires out , drains out and onto the cardiac ward. I guess it's only recently since "watching" others post operative recovery that I can truly appreciate how stable Eloise was , no blips, no backward steps, no scares. Just steady progress that took us back home. Yes very lucky indeed.
So I guess at times when I'm angry that this happened to Eloise, a simple childhood illness destroyed her heart, I have to think of all those waiting for heart transplants. Families so desperate for the same chance as my Eloise has been given. They want what I have because it means their loved one stays alive. It's been a good life too, I know there was a year of stress but 11 years of good, fabulous illness free health prior to that and maybe having the blips pulls you up a little. You take more care with medicine timings, you get more blood tests and you become more vigilant.
The transplant roller coaster is a tough one, loads of ups and downs, with no getting off ! But I'm glad my daughter is alive and hey Eloise and I love a good rollercoaster !
I just wish there wasn't such a shortage of organ donors, that people didn't have to get so desperately ill before their call comes. I wish three people a day didn't die waiting. God I want all my friends that are waiting to get their chance, life is the greatest gift of all and one Santa cannot deliver sadly. So my love and thoughts are with those special to me who are waiting and all the people in our transplant support group that need a transplant right now. Keeping positive for you all as we always have HOPE xxxx
No comments:
Post a Comment