great ormond street
-fight to breath
lungs are considered the most complex organ to transplant
failure rates remain high
25% of patients die on the waiting lis before they get new lungs.
young females will deteriorate more rapidly than others on the waiting list -e.g jess
dr helen spencer
dr paul Arora
transplanted lungs won’t last forever - they are not a cure
for some people a lung translate can last 5-7 years
maybe even 10
‘you have to be honest with children, you have to do it in a way that you dont frighten them with the answers’ - dr helen spencer
parents have to agree for their child to have a transplant.
———————————————
in the process of a lung translate
operated on by mr victor tisane
(very difficult to breath) lung infection, puss inside the airways -humbling to see this sort of thing when we take it for granted, we take a breath without even thinking about it but patients with cystic fibrosis they have had to make such a conscious effort to breath.’
the next 4 hours after chloe transplant in crucial to tell weather the lungs are starting to function.
24.00
chloe post transplant
obsessive monitoring
proportion of transplants won’t go well and perhaps won’t get through first year
new lungs leaking worrying amounts of fluid
the longer someone is on intensive care the more the problems tend to appear and stack up. kidneys, gut
doctors much decide if there is anything else they can do to save her.
doctors preform another operation, to help new lungs attach to her body and stop the leakage of fluid inserting medical talcompowdered onto the surface of the lungs via holes in her chest.
the hope that after the recover can finally begin
‘parents dont come to us of sympathy- open and honest advice about the right thing to do’
3 month after transplant - chloe is going home
chloe is back at school and doing well
———
charlie
just 10 days of joining donor list
‘its gonna open up a new door and its gonna change the rest of my life and ill be able to live a normal life and ill be aable to play and not get out of breath.’
mt nagarajan muthianlu - lung transplant surgeon
one of the most experienced in the world of children lung transplants.
ones the new lungs and remove from the donor surgeons have only 6 hours to connect them to charlies blood supply or they will seized to be viable.
taking out lungs from a patient with cystic fibrosis their lungs are very scared and very stuck done and trying to take them out the explantation can be very difficult - helen
with in minuets charlie lungs are removed
after 6 and a half hours in surgery charlie is breathing with new lungs
will be another 2 hours till charlie parents can see him
‘i want to everything i can possibly do’
helen- ‘ for me thats the joy of this journey, seeing them for that first time being able to enjoy a normal quality go live do what all of their friends are doing keep up when there playing food ball or swimming and thats the extraordinary thing about transplant’
charlie is now swimming, playing football, cricket at tennis.
——————
'i wanted to make the decision myself incase something went wrong i didn’t want the to blame themselves’ (parents)
jess - 2 more months have gone by without new lungs
'i just said no, this isn’t real, its a dream.
i felt really numb, i just kept looking here (patted her chest) going oh, there gonna open me and i was just so worried but deep down i new if i didnt have it i would die anyways so i may swell have it but when they told me it wasn’t right for me and the lungs weren’t a match i new that i wanted it because when they took it away from me i wanted it more. thats how i knew i was sure.
when they took it away from me i really just felt like, oh, but I’m also scared to get another call just inane that happen again.’
4 months received match
making a rapid recovery
‘somebody has been selfless enough to give me their organ so
the least i could to do is push it and work at it because they are still living in my so i could still help them live n ill be able to actually go to school and put in the effort to get good GCSEs i wanna be the first person in y family to go to university’
‘all i can think about is my little sister summer because she deservers to have a older sister thats well, i just wanna prove that it doesn’t matter whats happened in the pat you can change it like 2 weeks ago i was on a incubator, now look at me , look at how much I’ve changed.
jess has recently completed a 10km walk for charity.
———
louis
only ope may be a trcioscmony to help him breath- but this may rule out a possible transplant
if he does have a traciosomy may keep him a live for weeks/months
we won’t offer transplants to people who are on intensive care unit on ventilation as it is well recognise that if you transplant people in this situation
the outcome is way worse then if they are able to breath on their own. - dr arora
if louis is accepted on the transplant list - youngest patient
'you get to know the child very well and the patients very well. obviously all the doctors and nurses are all human you end up with an emotional attachment, but its crucial we dont let our emotions impact upon the advice with give to parents we have to be dispassionate and objective as possible.’ dr arora
died morning after deciding to go on the waiting list.
spent half he’s life in hospital
many children pass through this hospital
and louis was one we got to know very well
hard we were unable to do anything for him, hard that we had some ideas, harder still that we never got the chance to put them all into place.
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