My dad had CFA and had a lung translant.

Chest and lungs
1

Hello,

My dad was diagnosed with fibrosing alveolitis when he was 58.

He did not respond to any medication or steroid treatment, and despite his age, did recieve a lung transplant.

His disease was so advanced, and so bad that he was originally supposed to have a double lung transplant.

Unfortunately, only one lung was available, and if he did not accept this organ, he would have been dead in a matter of days. He accepted the organ and immediately was taken to hospital for his operation.

The effects of the surgery were noticeable immediately, he had good skin colur, and was able to breath unaided within 24 hours, something he could not do just hours before his surgery.

My dad had his transplant nearly 12 years ago and is in good physical health. Patients are closely monitored, and have a full check up every 6 months.

It has made a great deal of difference to his quality of life.

I can't believe how many posts there are on here about FA, and so little is said about transplantation. And the posts i have seen, say that patients are given a 2 year life expectancy! Thats unbelievable, and not necessarily true.

As i said, my dad is still here nearly 12 years on, and was literally on the brink of death. He was bedridden, on 100% oxygen, and couldnt even go to the toilet. That is how ill he was.

My mum used to leave the back door open in case he died whilst she was at work and the paramedics/doctor needed to get to him.

The financial impact of this disease is cruel too, my mum took so much time off to nurse dad, she almost lost her job. She had been with the company 20 odd years, and they treated her terribly.

All those suffering with this awful disease, and their families....press the consultants for transplantation. It can totally turn this horrid illness right on its head.

I hope that people can take hope from my story, i have just stumbled across this site, and is the first time i have shared this.

Best wishes, and never give up hope.

2

thank you so much for posting your dad's experience. I had virtually dismised any idea of transplant because I am 64 and up until 3 years ago had a very full and active life and felt that all I could do now was keep positive, do yoga to help with the breathing and keep exercising. It took two years to get a diagnosis ref my breathlessness and I am on oxygen 24/7 but I am lucky to have a very caring husband. My consultant has not really pushed any info on transplants merely says that the prognosis is extremely variable from patient to patient and I could have another two or perhaps seven years as things are at the moment. Are there many side effects following the lung transplant? Long term medication etc? I would love to see my three month old great grandaughter grow up.

JA

3

Hi there,

Sorry its taken so long to reply.

About the transplant, well my dad as i said was days away from losing his fight, but his doctors didnt give up on him and so was allowed to have the transplant.

The side effects are having to take anti-rejection drugs, which the patient will be on the for the rest of their lives.

One thing i will say, although it isnt meant to put anyone off, is that occasionally (very occasionally), the drugs can cause cancer.

My dad has had lesions on his face and ears, but they were very easily treated and removed and has no lasting effects from this. And as i say, post transplant patients are monitored so so closely, that anything can be picked up on promptly by the doctors.

I would agree that success rates vary from patient to patient, but is it worth the risk to say 'no' to someone? They didnt think my dad would survive the operation, he was SO ill, but they gave it a shot and he lived.

12 years is an astonishing feat for a single lung transplant, its incredible!

I will be honest and tell you that as well as the lesions, my dad has been hospitalised a few times with chest infections, but the hospital who performed the transplant treated him, were again, fantastic and he recovered and returned home. The worst one, he was in hospital 2 weeks.

He has days where he feels quite under the weather, and doesnt go out much, hot humid weather and extreme cold can affect him, but he is still here with us, and has a good quality of life considering all he has been through.

I hope that your doctors will do everything they can to give you as full a life as possible.

its quite a soul wrenching thing to go through, due to the fact that someone will lose their life for someone else to gain life. Its quite an emotional journey. The transplant co-ordinators are fantastic and will be there for you 100%. They can even pass letters from the recipients family to the donor family, even arranging meetings in special cases.

Have you looked at the organ donation website? We found really useful information through that.

My 7 year old daughter knows all about how someone died to give her grandpa life again, and she too is so grateful to the family.

I hope that you can gain as positive an outcome as you can from this,

and i send my very warmest christmas wishes to you.

God bless smile

4

Hi Alex,

thank you so much for taking the trouble to reply to my queries ref your Dad's lung transplant. The information is really useful and has encouraged me to consider the possibility of looking into the feasibility of having a transplant. At the moment I am ok until I want to do anything physical then the slightest thing has me breathless despite being on oxygen. The family have all been around over the Christmas period and we have had a lovely time doing the usual Christmassey things. I had to give up any ideas of walks (even using the mobility scooter) because of the frosty weather and because I even got really tired playing games at the table. I am still very tired from coping with the excitement of having all these visitors so will sign off here as my brain seems to have gone to mush.

Thanks and hope I will here from you again

storyteller

5

Hi there,

Its lovely to hear from you again, and glad (although it was tiring) that you had a nice family christmas.

My parents came to visit me and my daughter for christmas, as i have back problems and had been unable to travel to them, so we had a nice family christmas too. My dad did the driving and even though its 120 miles, he managed it.

He hasn't been out much either, the cold is too much for him, and even though there have been so many germs and viruses about as there normally are this time of year, he has managed to avoid them.

I am so glad that you have found my dad's experience helpful and hope that your doctors will do everything they can to help you.

One tip i do have though, is to always get a second opinion if you have doubts about the first. I always hear about doctors writing people off, then another doctor will say there is something that can be done.

Do all the research that you can, and go armed with information.

My dad didn't do this, but i am talking about my experiences with my back problems. One doctor didn't want to do anything, but in the end i went to another, and needed 2 lots of spinal surgery. Its a lot different to your situation i know, but the principals are the same, go down every avenue and never give up.

I hope to hear back and know how you are doing, and wish you all the very best for this new year.

Love from Alex xxx :winkeye:

6

Hi Alex,

haven't visited the site for a while so it has taken ages to 'catch up'. I have replied to some of the other posters as you may have noiced.

Since Christmas I have been very busy decluttering old books and photos and trying to replan our kitchen to make it easier for husband to work in!

I am looking forward to eldest daughter visiting for the weekend with her husband and their 3 children (as long as they do not have colds) Then am looking forward to having a holiday with them the first week of April in Cornwall. I have been wanting to go to the Eden project since it opened. If I had had a crystal ball I would have gone BEFORE I got ill with IPF but c'est la vie!! I have my oxygen, my back pack and my mobility scooter so hopefully should be able to cope.

love and prayers

Storyteller

XXXX