My husband has Fibrosing Alveolitis
Posted , 3 users are following.
My husband was told of his condition the week before Christmas 2006. We tried to be very positive and as he had started to have breathing problems we booked a holiday to Lansarote with the agreement of his consultant. On the second day he became poorly by that night he was in great distress unable to breathe. We spent the week with doctors and clinics and the day after we got back he collapsed and was taken into hospital. Last year he spent a lot of time in and out of hospitals having an absyss removed from his better lung. He got Cedif 4 times and became a carrier for MRSA. His last tube was removed the week before Christmas 2007. Since then he has returned to work, mainly because of the lack of financial support (he was self employed) and so that he can still have a life other than medically related. Doctors tell us the Fibrosing is reasonally stable but his cough is much much worse and his breathing is poor. He is 58 and we have been married for 37 years, we try to make light of things and still laugh alot which really helps. 
0 likes, 3 replies
james_McP
Posted
He is 61 years of age and can now only walk 5 or 6 steps before he becomes out of breath.
There is no help. steroids have not helped, he is unsuitable for lung transplant.
Isnt is just sole destroying watching the person you love struggle to breath.
We know he has now had this condition for around 18 months, but his scarring of the lungs have plumeted so much we are in shock.
I feel not enough research is being done to help sufferers.
Look forward to hearing from you.
jeanou
Posted
It leaves carers feeling lonely and unsupported but support is out there, believe me.
Take care
Guest
Posted
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.
Transplantation may be something you and your husband may want to consider at some point, but i wanted to share this with you so that it may help you feel that something positive can be done for both of you and your futures.
I wish you and your family all the very best
God bless x