What to do?

[Wibble28]

Originally I was diagnosed with lung fibrosis and earlier this year I received confirmation that I have CPFE combined pulmonary fibrosis and emphysema.I suffer from shortness of breath and some everyday tasks are becoming more difficult. Even putting my socks on can leave me short of breath.

I have noticed that the change in weather really causes breathing problems.

I feel as if I am being treated as an illness and not a person by my doctor.

The last year has been difficult mentally , as I also found out I'd had a stroke, I have a partial blockage in the artery in my right thigh, as well as having Hip problems.

I'm really hoping to chat with others who have been through/going through the same thing.

[sassy59]

Welcome to you Wibble28. Hoping you get some replies soon. My husband Pete has COPD (chronic bronchitis) and suffers a lot with breathing problems. He also has heart disease. Have you had a heart check and do you take an anticoagulant? Hoping you get help and support from the medical profession. Take care xxx

[Wibble28 in reply to sassy59]

Hi, I'm lucky I have no problem with my heart according to my heart specialist. I do take a type of aspirin everyday due to the fact I had a stroke, prescribed by the neurologist, which helps to keep the blood flowing. The fact my artery in my leg is partially blocked does make me higher risk for a heart attack, although I'm also taking meds for that.It's knowing that I have a non curable, progressive lung disease, which is worrying. The problem is no one can tell me the speed of progression as it's different for everyone.

I just wish my specialist talked to me.

Last time I saw her, she just said I think you might have a blood clot on the lungs, go and have some tests. No discussion at all.

Obviously it was a stressful few weeks, with no support from the doctor

[Patk1]

Welcome to the forum x

[Wibble28]

Thanks 😊

[Alberta56]

Welcome to the forum. You certainly have a lot to deal with. I don't know anything about pulmonary fibrosis, but emphysema you certainly can deal with. Sensible eating, gentle exercise and learning breathing techniques can help no end your feeling of wellbeing. There are videos on the AsthmaLung site which show breathing techniques. Better still ask your doctor to refer you for Pulmonary Rehabilitation. Lots of us have found that very helpful. We lungies have to take charge of our own condition and politely insist that our doctors provide us with the referrals, equipment or anything else we may need. Emphysema is a progressive disease, but, if you look after yourself, it progresses very slowly. I have bronchiectasis, but my father had emphysema back in the 1907ies when treatment was positively stone age and he lasted quite a reasonable time. Good luck and best wishes.

[Wibble28 in reply to Alberta56]

Thanks for your response and the information, it's very helpful. I know that both the fibrosis and the emphysema will progress at their own speed.

Fibrosis basically is the scarring of the vessels at the base of the lungs which spreads upwards and reduces the lung capacity until eventually the lungs are blocked completely. Because the emphysema affects the top half of the lungs it's a double whammy.

I'm trying to do some form of exercise , but I often struggle.

I'm hoping that I have a good few years left.

Thanks again for your message

[Alberta56 in reply to Wibble28]

Do keep in touch. We like to know how our fellow lungies are doing.

[armstrong2]

hello wibble 28 l was diagnosed with pulmomary fibrosis in december last year also l have emphysema ..l havent has yet been refered to see anyone ...a waiting list of 40 weeks l have been told so l do not know how bad it is ..l do know it is not reversable ..mentaly it isnt doing me any good ...l get very breathless doing the slightest thing ...bending cuts me in half so l understand how you feel trying to put socks on ! hope you eventually get your answers from the medical profession ..take care and hang in there

[mikebaker1949 in reply to armstrong2]

Tell your doctor you want a referral & be insistent to the Royal Brompton or another leading Lung Heart Hospital that's important

[Wibble28 in reply to armstrong2]

Hello, I'm also struggling mentally, I have good days and bad days. Luckily I work online and am able to go out (although I really need to plan outings). Living on my own can be a bit frustrating at times as there are certain things I cannot do anymore. I don't like having to depend on others as I feel it's a sign of how bad things are and will become.I'm considering asking to change my lung specialist as I feel that I'm being treated more like an illness than a person.

I really hope you get the help you need.

Good luck with everything and let me know how your journey goes.

[armstrong2 in reply to Wibble28]

thanks wibble 28 lam a lot older than you and yes you are treated the illness rather than the person ...it is very frustrating when you have been used to doing things yourself and now you cant ..you say you live alone fortunately l have a husband who helps and l now just recently l have help doing housework ...never in a million years would l ever have thought it would come to that ? l say also good luck with yourselfand in your journey too

[Alberta56 in reply to armstrong2]

mikebaker is right. You need to be persistent . Hard when you're not feeling good, but Littlepom, our guru, was insistent that we had to. Doctors do not always appreciate how hard life is for us.

[Wibble28 in reply to Alberta56]

Thanks. My GP is great, old school, spends time with each patient. But unfortunately my lung specialist is less about bedside manner and more about do this, do that, I don't think it's personal but it really feels like it sometimes. I've been waiting to hear from her, or someone from her office for a week now. It's getting frustrating.I really appreciate all the comments and advice people are leaving, it's nice not to feel alone and have others who understand what I'm going through.

[mikebaker1949]

Wibble same comment to you & good luck

[Piperava]

My late husband suffered with Idiopathic Pulmonary Fibrosis, Idiopathic meaning there is no known cause. Yes it is progressive but everyone is different. Can I suggest checking Action for Pulmonary Fibrosis website where you can speak to someone who may answer some of your questions. Also on Facebook there is a great group who as sufferers offer advise and support, I am still a member. Good luck and take care of yourself.

[Wibble28 in reply to Piperava]

Thanks for your comment, I'll look into the site you recommended, I don't have Facebook anymore

[Ergendl]

Can't help you with IPF, though a member of my singing group has had the condition for over 9 years and is still going strong, by keeping as fit as he can, and mentally and physically active. Just as an aside, I do find it easier to put my socks on while sitting with my feet up on my bed.

[Grinninggranny]

hi wibble38 my husband has the same along with heart disease . He has the most awful cough and suffers breathlessness which is what bought me to this group. I can’t tell you much other than I took the advice from people here and things have improved for him and we feel in charge of his condition.

I went with him to see our GP, questioned why they hadn’t offered medication for the cough and why he hadn’t been seen by the respiratory nurse. Best thing I done, appointment for the nurse within two weeks and walked away with medicine for the cough. The respiratory nurse couldn’t have been more helpful. She put him on oxygen and explained his condition to him in “idiot form” she sees him every 6 months and is able to call her any time if he has any problems. He sees the consultant every 12 months and has a scan prior to the appointment so that they are able to see how the PF is progressing. I hope you can get the answers/advice you are looking for from the group as I certainly did. You should have been referred to a specialist nurse. If you haven’t ask your GP. Good luck

[Galaxies1]

Hi. Sorry to read of your diagnosis how are you finding things since your post?

I was diagnosed with lung fibrosis 4 years ago. And it's hugely impacted my life. Really struggled almost overnight with all mobility and simple tasks. What things do you find useful?

[Wibble28 in reply to Galaxies1]

Hi Galaxies Things are okay, I recently had a bronchoscopy and everything is stable for the moment, which is good news.

I found my breathing to be a lot better in the summer, the warmer weather definitely helps. Although the coughing can be bad as there's often additional pollution.

With the colder weather certain things have become difficult again. I live on the fourth floor with no lift so struggle with shopping amongst other things.

It's a bit of a catch twenty two, as I know doing some form of exercise helps but struggle as I can't walk more than a few hundred feet without having to stop due to pain in my hips and legs. I'm currently waiting to see if I need a stent in my thigh which may help with the walking.

I have realised I just need to do things at my own pace and allow more time for day to day activities.

I'm still working but it really knocks it out of me since I started working in an office a couple of times a week.

Sorry to hear you're not doing well, do you do anything to help with your problem?

[Galaxies1 in reply to Wibble28]

I really resonate with all you write. I'm still trying things. It's so sporadic. If I try and move more it can cause a huge flare of the auto immune or just wipe out my lungs. Some days even eating is exhausting. I think you're right about taking things at your own pace. I just miss the old me so much. I miss long walks, running, dance. Freedom mainly. I was very active so it's been v hard. It's comforting to hear other peoples experiences though. 🙏

[Wibble28 in reply to Galaxies1]

I used to be creative but since my stroke seem to have lost my creativity (Write songs, play guitar and sing. Write short stories).

Like you I used to be active but I'm now finding new things to occupy myself.

I think one of the other issues for most people on the forum is trying to explain your health problems to others, because they don't understand. It's not like a broken limb or traditional illness that people know about. My brother was initially very dismissive and told me I was lazy and just slept a lot. Since I've explained in more detail and told him about how serious it is, he's much more understanding and keeps in touch regularly to make sure I'm okay.

[Galaxies1 in reply to Wibble28]

Yes I again really resonate. I also feel my creativity has gone. I don't feel the fire to create to paint or sing or write. Some days just opening a jar or not or putting on socks or not can reduce me to tears. I'm not inspired by me or how I'm doing.

And for sure people just don't get it. Even those you think would. They think I'm being fussy if I start coughing around certain scents or start struggling to breathe when reaching for something. They just don't get it because their lungs work and they can basically just breathe. An automatic thing we shouldn't have to think about.

I take refuge in old comedies and trying to find an old school comedy to smile to. They say laughter is healing :). I still have faint hope one morning I'll wake up and feel much better. I guess it could happen 🤞🤞

[Wibble28 in reply to Galaxies1]

I think it's not always easy to stay positive when you don't feel good. This was especially the case when I was first diagnosed.I think for me it's about concentrating on the things I can still do, even if they take a little longer to do.

I like old comedies as well, movies and TV shows.

What things can you still do?

[Galaxies1 in reply to Wibble28]

Everything is affected. Some days I'm floored with how nothing is the same. The auto immune condition means my muscles are dwindling as is my weight and strength. The LF means I struggle with all small things. I've been housebound for a long time now as the lift here never works and I can't manage the stairs without help. I never ever thought this would be me. Raynauds means my hands are this weird lumpy painful oddity. Keep trying to find ways back to me.

What kinds of things did you do creatively? Is there anything that still could inspire?

[Wibble28 in reply to Galaxies1]

I used to be part of a group. I used to play guitar and sing as well as write songs. I did a few concerts, just small local things.I also used to write stories.

Since the stroke it seems that the part of my brain that deals with creativity has gone.

My other health issues, lungs etc have effected other areas of my life.

You have a story to tell so you could always write or vlog your life. It would keep you busy and you could do it at your own pace

[Galaxies1 in reply to Wibble28]

I'm so sorry to read this. Sounds like you have a very creative spark in you. I'm sorry you feel it's not there now. I really hope if it makes you happy that you can resurrect it again. And I also totally understand what you write about other health issues. It takes its toll.

I do have lots of stories to tell like you say though I just don't have the energy. Anymore. Also it feels like everyone is shouting all the time heres my story and I don't know I have any shout in me. As much as you get support you can also get the haters and I feel too vulnerable to navigate that.

I always loved the guitar because you can take it anywhere. I was mostly very very basic but at one point I taught myself to play some Dyla n. The pain though that your fingers go through

I hope you're doing okay today 🌞

[Wibble28 in reply to Galaxies1]

My day has been okay thanks, I managed to get out today for the first time since Friday afternoon. I went for a stroll and a coffee.

Maybe write your story, even if it's just for you. I have been looking at publishing some of my stories on Amazon Kindle. You can do it yourself and apparently it's quite easy. The motivation is a different matter 🥴

For the music, maybe at some stage it will come back. As I said previously I'm trying to find new things. Hopefully you can do the same.

[Wibble28 in reply to Galaxies1]

Hi Galaxies Just wanted to check in and see how you're doing?

[Galaxies1 in reply to Wibble28]

Hi - thank you that's kind. I've been in a lot of pain actually and feeling quite blue with the daily struggle. But... that's how it is. I'm trying my best. One painful wobbly foot after another. How are you doing? How have you been? 🌼

[Wibble28 in reply to Galaxies1]

Sorry you've not been great, hopefully next week will be a good week.

I'm okay thanks, slowly but surely.

[Xrossstich]

I’m so sorry you have all these ailments, my husband has pulmonary fibrosis, Alzheimer’s, eating problem & aschmic heart disease. I think these things are sent to try us and they certainly do. Wishing you good health anyway.

[Wibble28 in reply to Xrossstich]

Thank you for your message.I'm actually feeling better about everything now.

Initially having all the different diagnosis at the same time really scared ed me.

I know I need to enjoy everything albeit a bit more slowly than before.

I'm sorry to hear about your husband, I hope you are ok as I'm aware of the toll it can put on the people closest to those with certain health problems.

[Xrossstich in reply to Wibble28]

Live life while you can because it’s a miserable life when you can’t that’s for sure, make the most of every day.