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Lung Transplant

Inogenrvh profile image
12 Replies

Hi folks I'm Danny and I have sarcoidosis in the lungs and I'm being acessed for a lung transplant at the moment, I'm told by the doctors that my condition is pretty serious what is the waiting time for this?

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Inogenrvh profile image
Inogenrvh
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12 Replies
diesel12 profile image
diesel12

Hi, sorry I can't help you with this but someone will come along who will. Make yourself at home xx

madametobacco49 profile image
madametobacco49

my ex-husband had a double lung transplant==he had to move to town where hospital was so if right lungs came in=-==he was there and ready--some waited months--or never got them--he gottem in two weeks--That was 8 years ago--Has listened to drs to a tee and I credit that with him doing so well--anti rejection drugs hurt kidneys with time--so has to have kidney transplant soon--but piece of cake after that double--you must be fearless and want to live--I remember him draggin the oxygen around--He had IPF--was down to about a month of life--when he got his lungs--GET yourself on waiting list and hope for a new life--don't wait--you can get to sick to survive the surgery and they wont waste a good set of lungs on people who aren't good candidates--I wish you luck--write me anytime if questions --I will ask him and get back to you-or you can email him--MmeT

Inogenrvh profile image
Inogenrvh in reply to madametobacco49

Thank you so much for your reply I really appreciate it, I really want to live as much as him and I'll remember your advice

madametobacco49 profile image
madametobacco49 in reply to Inogenrvh

he said the lung biopsy worse than transplant= good luck MmeT

punkyb profile image
punkyb

MY SIL just got a transplant and she was on the list almost a year.

Caspiana profile image
Caspiana

In Japan it's between two and three years. I believe the UK is much faster. Welcome Danny. 😊

G'day Danny

Welcome to the "Family"

I wish you well with the assessment.

Transplantation, and waiting time.

There are 3 criteria for a Tx.

1. Blood type Must be same as yours, although in extreme cases "O' will be used as it is the universal match. 'B' neg is the only non compatible type.

2. Height . Donor has to be similar height. With lung disease your lungs shrink and so does the lung cavity.

My wife Susan has IPF and is on the waiting list here in Melbourne. (been waiting 14 months) The norm is 6 months but due to her height 5'3" we need a donor about 4'8" tall. Susan's lung function is at 25% which means that her lungs have shrunk 75% like wise the cavity.

3. Antigens. Being a male you have a greater chance of a good match as opposed to the ladies, especially those who have had children.

Danny,

There is no queue when you are placed on the list, it is simply when the donors lungs match , you receive a call.

In the event that your health deteriorates, you are given priority, but this still does not guarantee you transplantation.

We have seen friends receive new lungs, one 5 days on the list, another 2 months, and a third 3 weeks, and here we are 14 months on and still praying for "That" phone call.

If you are offered a lung biopsy, talk to your specialist. We refused, after our pulmonologist warned us of the dangers associated with this procedure. Also we have read of too many sufferers struggling after this surgery. TAKE CARE.

Good luck on your journey.

Will (Australia)

jackdup profile image
jackdup in reply to

Very sorry to hear your wife has been waiting so long and I really hope you get a call soon.

Mendy profile image
Mendy in reply to

Hi Will, i m still hoping and waiting when u write here on forum, that Susan had a lung transplant and she is recovering very well. Looks like my husband also ll be on the list...

in reply to Mendy

Thanks Mendy

It all happened today

See my new post

Will

jackdup profile image
jackdup

Can't offer any advice but can wish you well in the assessment and hopefully you can get a transplant in a reasonable time.

onamission profile image
onamission

Welcome to the site which hospital are you under a few on hear are at the hospital in Newcastle

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