lung transplant

[gilles]

I was wondering if someone had received a lung transplant and if yes was it worth the effort going thru it all thank you and by the way I am new here and in British Columbia Canada the question is on my wife's behalf she may need one in the near future but it sounds very scary

[Jessy11]

Welcome to the forum gilles. I'm sorry I'm unable to answer your question. Someone more knowledgeable than me on the subject will come along & hopefully help.

Just want to wish your wife all the best & please feel free to come on & chat to us whenever you want.

We have members from all over the world 🌎 & you're very welcome 🌼

[gilles in reply to Jessy11]

thank you so much

[madametobacco49]

My ex-husband had one 8 years ago and has no regrets because he had just months to live and was so miserable--The misery of not being able to breath got him to a point where it was make me better or kill me--He is on anti-rejection drugs so not much of an immune system--has had the flu for months--still wouldn't go back for nothing.. Around this time the drugs you have to take begin to take a toll so now it will be a kidney transplant--which is a piece of cake after lungs--Why not take a chance for another shot at life?? He got a 43 yr old womans lungs--perfect--so sad the thole thing but they crossed paths for a reason.... He never felt any pain--just so delighted when he woke up and was alive--On O2 for almost a year--Ironically we are divorced but I am on O2 24/7 with CHF and AFIB--Id have surgery in a minute--Nothing worse than fighting for air and it will come to that--I remember him just being blue--Get ediucated if your wife is healthy otherwise it may be the ticket--[-Any questions email--I can ask him or may have the answer--Get her on the list asap if you deside to do this--He seen many die waiting-it can be a miracle-Blessings--Mmet

[gilles in reply to madametobacco49]

thanks and yes she is on the list and your ex had this done 8 years ago and he still doing good?

[madametobacco49 in reply to gilles]

yes 8 years and knows some who had it 10 years ago--just do exactly what they tell you--don't waiver--It will be ok....hugs,Mmet

[madametobacco49 in reply to madametobacco49]

After so many years on anti rejection drugs(which you have to take or body would rject lungs) they become hard on your kidneys--so he will have to get a kidney transplant in the next 6 mos or so--which is minor compared to lungs--All of it has been worth it to him--and I think anyone who has had one will tell you they have no regrets--Actually I think he is going on 9 years now--would you like me to see if he can email you,or contact you some way?? That might be very helpful--He loves talking about it---anyway I can help you--MmeT

[Hidden]

G'day Gilles

Welcome to "the family", this is a place where we laugh,and sometimes cry together, share stories and tell some "whoppers", vent our spleens, but most of all, support each other, albeit thru a keyboard,probably never to meet, but we create terrific friendships along the way.

Now to try to help you with your question

My reply is long winded...but necessary (My apologies)

My wife (Susan) was diagnosed with IPF in May 2014.

She received "The gift of life" a bilateral lung Tx in July this year after being on the waiting list for 14 long months.

When they examined her diseased lungs they informed me that "they had gone past their use by date" and I would have lost her within months. She would not have been here for CHRISTmas

So is it worth it........ From where I am......Emphatically YES.

There are always going to be some problems...we have experienced some already and so have the other 13 in our group who were Tx'd in the same period (3 months).

One has been in and out of hospital for the past 4 months, the latest being open heart surgery due to blocked arteries in his heart.

He is still in ICU but the Dr's are pleased with his recovery.

Of those in our group... all have survived.

When you weigh up the options.....what are the options ???? I would now be a widower,for the second time, I lost my first wife to cancer in 1975 (aged 31 years).

I look at my beautiful wife every morning when I wake up and thank GOD that we were given this chance.

We lost two IPF friends this year, one in January and the other in October, one could not decide which way to go and the other declined to have the TX.

My heart goes out to their families, who must be asking themselves why???

No one has the right to make the decision for the sufferer, we can only suggest how we would react, but , until you are that person who is given the terrible news, then has to handle the side effects Denial...fear...anger...depression, followed by SOB (shortness of breath) and the constant dread of "This is terminal," ...... we have no idea.

You as a carer will need to be her "rock," .....I can tell you first hand that this has to be foremost in your mind, even when you feel that you cannot win.......where there is faith there is hope. This bumpy road you are on is also being traveled by over 80,000 others and it is scary, BUT this beast of a disease can be beaten.

Be there for your wife and if your are still working, arrange for family or friends to be your back up and support. For your wife's long term survival, there are 2 things she MUST do

1. A healthy diet

2. Pulmonary rehab exercises. This can only be done under the control of a qualified Pulmonary Rehab Physiotherapist. Not exercises done in a gym. If Tx becomes necessary the first thing the Tx team will insist on is Weight and fitness, these are essential to survive the operation. Susan really pushed herself, twice weekly visits to the rehab centre for 2 years, maintained a healthy diet and was out of bed within 24 hours of surgery.

If it is decided that a Tx is needed, I am only too happy to tell you of our journey, probably best thru a PM.

I will keep you and your lady in my prayers.

Will (Australia)

[Tee1008 in reply to Hidden]

Wonderful reply, Will. xxx

[Hidden in reply to Tee1008]

Thank you Tee

sometimes the right words do come out at the right time

Merry CHRISTmas

Will

[gilles in reply to Hidden]

thank you Will I am her rock and always be you take care

[Hidden in reply to gilles]

You are most welcome Gillies

Merry CHRISTmas Mate

[gilles in reply to Hidden]

thank you Will and the very best to your wife

[sibkev]

hi ya i had mine march 11 this year i had 4 month to live they did not think i wld make the op but here i am and all is well no problems i go back once a month to be chq over ie xray lung function bloods etc lungs are working at 123% its not as bad as you think it is but after the op is when the work starts walk walk walk bike ride exercise bike weights all to get back what i lost but so worth it yesterday i walked just under 5 mile if you need to know anything ask me i will tell you all about it and i wld do it again in a heartbeat

[gilles]

thank you