Ok, I felt very strongly compelled to respond to this post... This may not sound very polished nor politically correct, so I apologize in advance. This also may make me sound very uncaring for those who don't know me in person.
Transplants... The end "solution" to a horrible disease process (whether it is liver failure, heart disease, CF/pulmonary fibrosis, cancer). We all know, it's trading one set of problems for another set of problems, though one hopes the problems are infrequent (ie. rejection). Those who feel that transplant is worth it, also know the risks of having a transplant. It's a very tumultuous journey for those -- the listing, the waiting, the worry of never getting it, the concern that "for you to live, someone has to die for you." I've been there as both a sibling to someone who needed one as well as a cf person myself who knows that one day I might need one.
I work in a pediatric ICU as a nurse practitioner. I have taken care of both kids who have had transplants and kids who are waiting for transplants. I've also taken care of kids waiting who have died while waiting. It is very sad and I have a lot of emotional drain from these kids who die waiting. Simply put, we as health care providers NEVER give up on a waiting child (unless parents decide 'enough is enough' or the child's critical illness makes him/her disqualified from the organ at that time). We will place kids on ecmo (essential life support, taking over the work of the heart and lungs) as a bridge for a possible transplant. Sometimes this works, many times it doesn't and it's heartbreaking. I care too much for these kids and it's so hard to try so hard to hold out for so long for an organ and it doesn't happen.
To simply put: There are not enough organs to go around. There are 100,000 pts on the waiting list according to unos (United Network for organ sharing, www.unos.org). This includes adults and children. Over the past 7 years, there has been a steady inflow of people who need transplants. Also said, over the past 7 years, between 5-10% of those waiting die on the list (that's overall average for the entire US, it varies between 2-15% in individual regions of the USA). There has been a slow growth in the number of donors for transplants to occur.
So... what's my point? There are some people, needing transplants and living in the USA, who STILL die while waiting.
As uncaring as it may sound, I am sorry, but I am against non-US people coming to the USA for transplantation. That is just taking a life-saving organ from someone who lives here and can really use the organ.
I am really sorry that the UK is not willing to transplant your friend. I've read her blog regarding this issue. One thing that stuck out is that the waiting list is 4 years and that why bother working on the other issues since the wait is so long anyways. I understand she was probably venting her feelings.
But here are my feelings... so.. because the list is way too long, come to the USA that has less waiting time to get an organ. How would you feel if the situation was reversed? Imagine being here in the USA on the waiting list... you've been told that any day now you could get your life-saving organ... You are struggling day to day, hoping for that transplant day. Then you find out that there is a person from another country, who happens to have your same blood type, has raised enough money to pay your hospital straight-up, but who has a higher status because she got transferred from the other country to your hospital in the ICU. She gets the organ and what now? You are helpless waiting for another organ that may NEVER appear. In my opinion, I'd be pissed off.
Each country has its own set of health care issues. We have astronomical costs and issues with inequalities in health care distribution. Yes, we have a shorter waiting list than other countries. However, other countries, like Canada and UK, have national health care for all. No one country is perfect...
I probably am opening a can of worms... but I had to voice my opinion on this. I really am sad by your friend's situation.
I am just amazed at the cost -- 400,000 POUNDS... that's over 630,000 USA dollars. That's a lot of money to invest in a transplant that may extend a lifespan. That's not including post-transplant medical care with meds. I don't know how many people would be able to do that.
That's all for now...
Jenn
30 yo cf, sister to brother 5/74-04/05 (had double lung transplant in 3/05)
