My dad has fibrosing alveolitis.

Chest and lungs
1

Hello All,

I've been reading with great interest your comments on this terrible disease. My dad was diagnosed about 2yrs ago, he is 77 now and he is not on medication for it. He goes to his doctors surgery once every six months for a check up, and doesn't have a regular doctor (as he has to take pot luck who he sees).

He had not been given much information about fibrosing alveolitis, and doesn't have a computer. So i have been looking it up for him and finding this site has been a great help.

He has been very depressed as of late, and it really breaks my heart to hear him tell me that he wants to end his life. I live about 130 miles away from him, so i don't see him very much, although i call him nearly every day.

His doctor put him on anti-depressants which for a while did help him sleep at night. And during his most recent appointment he told the doctor how he was feeling, and the doctor upped his medication by 10mg, so he is now taking 30mg of anti-depressants!!

My dad has a cough which is really starting to get him down. He did find that a boiled sweet was helping him, but now nothing seems to help anymore. His doctor had put him on tablets for acid reflux saying that that was causing the coughing. But they didn't help him at all.

He can't sleep lay down in bed, as he coughs all the time, so he sleeps in his chair now (if he can.)

Sorry this has been so long winded, but if anyone can help with how to help my dads cough, both myself and my dad would be most grateful.

Joanne :rainbow:

2

hi. My dad hac CFA for about four years. It is very very difficult for all involved, i know. I felt quite helpless too. One thing to always advise when especially short of breath is try to relax (easier said than done) and more important, breath in through the nose and out through the mouth.

upright position is much better. I would say to you if you wanted any advice ring NHS direct even for your peace of mind.

Take care xx

3

You speak as a caring daughter. At 75 years of age, I have had Fibrosing Alveolitis for something like 2 years, although it was suspected as an asbestos related condition at first. Biopsy confirmed FA, but the procedure (Video assisted thoracic surgery) left me with pain for some months.

I am still living at our home, but have lost interest in much of the areas that I used work at. Sleep was improved after I started on this 30mg Mirtazapine (Avanza) in oeally disintergrating tablets taken at night before going to bed.

Sitting in a reclining chair did help me get to sleep in front of the TV. Recently I have been sleeping right through and not waking at 4 or 5 o'clock as before.

Your father may have to take on some form of exercise, if he has reasonable mobility.

I hope you can make some sense of this and be able to help him.

The hardest medecine to take is advice from one's children. I get plenty of it!

4

Thankyou both so much for your reply. I haven't looked on here for a while.

My dad is getting rapidly worse. He is on oxygen most of the day now, and has lost 3 stone in weight. I just feel so helpless as there is nothing i can do to help him, and all he wants to do is end his life.

On Friday he was taken into hospital as the nurses who come and assist him were very concerned that he might try to harm himself at home.

He seems to be a little better being in the hospital, i think having people around him helps, but he doesn't tell me how he is feeling really as i know he doesn't want to upset me. I talk to him daily on the phone, but it's getting more of a struggle to stop myself from getting upset when i talk to him. And the last thing i want to do is upset him. My sister is going to visit him tuesday, and hopefully i will be in the next week or two ( if i can control my emotions).

Thanks again for your help. I'm trying my best to just let my dad know how much he is loved.

Joanne :rainbow:

5

to joanne,

My Dad also has pulmonary fibrosis or FA. he was diagnosed in 2000. It started with a persistent cough and shortness of breath, having to curtail activities he could previously do like golf and badminton. Then he started using the oxygen, just in the evenings at first, then more and more frequently. suddenly you look back and realise that the disease has crept up on you and he is incapable of doing alot of things anymore. However, he has surprised the consultant with his determination. He has a scooter and now a car to put the scooter in and even getting to the car is a huge effort. He has oxygen almost 24 hours/day and 2 compressors. The winters are most worrying eith all the germs and infections flying around.

My Dad does have his down days but this e-mail couldn't do justice to the strength he has shown battling with this. I would urge your Dad to build up a relationship with one or two of the doctors at his surgery. They are invaluable support as the disease prgresses and if you are lucky, will do home visits when bad days make it impossible to get in for appointments. Also find out about breathing classes. These were held at Dad's local hospital and teach patients how to breath properly and how to stay calm. msybe go with your Dad to his next appointment with his consultant to ask your questions too. All the best

I'm sorry, i have just seen your Nov comments too. i hope your Dad is having better days now. There is so much he can still do. He can still get out and about. As for being emotional with him, that is OK - cry in front of him then talk about him and laugh too. I cried just writing this. Let me know how you are doing.

6

Dear Joanne, Just wanted to let you know that I am thinking of you at this horrible time. I do know what you are going through. I am one of seven children and it was heartbreaking to see my strong tough dad going through this. He also lost alot of weight and was very down but he did not want any of his children to see him in that state. He got very clever at fobbing us off! Eventually I realised that the best thing to do was to respect his dignity and make lots of phone calls instead. He was very brave. Do not feel bad about not seeing him, sometimes they prefer it that way. Just be cheerful and bright when you speak to him on the phone and tell him all your news. It is the best tonic for keeping their minds off their illness. I hope this is some help. Keep your chin up. Regards Liz

7

Hello again,

Thankyou so much for your response to my posts, im sorry i've only just looked at them, its been a real busy time.

My dad is still in the hospital, it's been six weeks now, and his mental state of mind is much worse.

I went to visit him a couple of weeks ago, and was shocked to see that he was in such a state. although i talk to him every day he never tells me how he is really feeling.

The ward he is on is for elderly people with mental health problems, and although at first he had told me it was like a 5 star hotel, he now refers to it as his prison. And he says he feels like he has been doing along stretch!

He has been getting quite angry and shouting at nurses and the other patients. Then of course he panics as he can't breathe and has to call for his oxygen. He has lost about 5.5 stone now, and although i had prepaired myself to see him, if was still such a shock to see this little frail man, who once used to be so strong.

He had a home visit about a week before christmas, so i am hoping that as soon as everyone returns to work after new year that they will get things moving so dad can go home. I think that he is getting much worse in the hospital. I am going to call the Doctor who does the rounds at the hospital on wednesdays, to see how she feels my dad will cope at home, and to tell her my concerns for my dad if he has to stay in the hospital.

I still call him every day, but some days i don't get long on the phone, as he has to walk to the phone, and is too out of breathe to talk ( if his oxygen machine isn't close to him ).

In summary it's not looking too good at the moment, but hopefully for my dads sake and sanity, things will be moving by the end of the week!

I wish you and your loved ones a Happy New Year, and hope everythingis ok with you.

:rainbow: Joanne

8

My dad passed away Sunday 13th January.

He was sent home from the psychiatric hospital on the Wednesday. It had been very difficult to talk to him on the phone, as his cough was very bad. He was glad to be going home, and his occupational therapist had taken him shopping for some supplies.

He said he had a cold and he wasn't eating. When I spoke to him on the Saturday for the last time, he seemed confused and said he couldn't hear me properly, and that he was trying to keep warm. My sister phoned him later that same day and he was much the same. We had said we would contact his doctor on the Monday to get some action, as apart from the psychiatric doctor calling around on the Friday, no one of a medical nature had called to see him.

I phoned his home on the Sunday morning and got no answer. I left it half an hour thinking he might have been asleep and tried again. It was after this second call I started to worry.My sister and I managed to get in touch with our auntie, (as dads next door neighbor was out at the time). They went around and found dad on the floor. He had been sleeping sat at the dining room table with his head on two pillows. The coroner said he probably went into a coma then fell to the floor from his chair.The cause of death was pneumonia.

These past few months have been truly awful for my dad. To have such a debilitating disease it is no wonder he just wanted to end it all! And I will never understand why anyone would think it would make my dads mental state any better by putting him into an elderly psychiatric ward.

At least dad doesn't have to suffer anymore.

:rose: S. J. Davis 1930-2007

In my heart for Evermore :love:

Joanne :rainbow:

9

You have my sincerest sympathy :? sad

10

My heart goes out to you Joanne. I am so sorry to hear of your loss and of your father's suffering in the last few months. I lost a dear friend to fibrosing alveolitis last year, aged 55, and it is a terrible disease.

I think this is also made all the worse by just not being able to do anything to stop it once it takes hold and to watch a loved one suffer so much as the disease progresses.

Take care

Barbara x

11

My sincere and heartfelt sympathy to you, you are right, it is a horrible disease, I lost my Dad to it 5 years ago, on Christmas Day of all days. He was 89 and had only been ill for about 4 months, but rapidly went downhill. He was at first admitted to hospital and put on various nebulisers and oxygen, but was then moved to a sort of \"halfway house\" nursing home, to prepare him for going home. His bungalow was checked prior to fitting the piping for the oxygen, he was due to come out, but he passed away very suddenly on Xmas morning. I sometimes think it was the best thing, as he was struggling to breathe so much; also my Mum had passed away less than a year before, and I think he'd just had enough.

He had smoked for some 70 years, but apparently this was not a contributory factor. Strange.

12

i am sorry Joanne, very sorry to hear of your Dad's death. It is such a tough time for you and your sister. Take comfort that he is at peace now and he got to come home. Take care J.

13

I lost my partner 2 years ago today with fibrosing alveolitis he was 59 he had the condition for about 5 years. You are not given very much information when diagnosed with this disease and I didnt really find out more until after he died and I went on the internet and was horrified at what I found out, my only comfort is that my partner never really knew what was ahead of him and he was always very possitive even up until he died. My condolances to you and to anybody else going through this just try and stay possitive for the person who has this horrible disease.

14

Just wanted to thankyou all so much for your comments.

If you are suffering with Fibrosing Alveolitis please don't give up, there is aways hope. And if you know someone with this disease, just be there for them and make them as comfortable as possible. It's hard for everyone involved, and if you lose all hope, it might as well be over. So think positive and don't give up!

I wish you all well, and thankyou again for your support.

:rainbow: Joanne :goodluck:

15

I see many different experiences of FA here.

My dad suffered for many years with this disease and was days from death when he had a lung transplant.

He was supposed to have a double transplant, but only one was available and it was a case of have that one or die.

He had his operation, and although we have had a few scares (infections etc)...he is doing well nearly 12 years on.

I have been on many websites about FA, and hardly any say anything about lung transplantation. Its shocking, as the transplant saved my dad's life. It needs to be made known a LOT more, and awareness raised.

All those affected, and their families, check with your consultants about transplantation. It is not easy to get on the list, but my mum fought tooth and nail. Of course, not everyone will recieve a donor organ, but without being on the list, who knows?

I have told my story on here to give hope to those who have none or think there is none. We were in the same place as a lot of you, but pressure on the doctors, gave us a happy ending.

I wish the very same for the rest of you x

16

I'm sorry to hear of your Dad's situation, I watched my Dad suffer with Emphasima, so I know a little of how it must distress you to see your Dad suffer and not be able to do any thing to help.

Any way, I have just been diagnosed with UIP. My cough was relentless, and made me feel exhausted. Luckily for me my Consultant sent me to an ENT Dr, who passed a scope up my nose and discovered that I had an over active secretion gland. This was causing post nasal drip and significantly adding to my cough. After just 2 weeks my cough had reduced by half! It has helped a lot.

It might be worth a try, I wish you and your Dad all the best.

Regards Sarah