Coping with Pulmonary fibrosis

[KCC08]

Hi all, this is my first post. I was diagnosed with PF approx 14months ago. At first I was doing really well, lung function and volumes good. Then last July I had slightly low SATs when walking so started using o2 when out and about. Come Nov, everything seemed to take a massive nose dive. Was told I needed a transplant, then told that because I was so bad that I no longer qualified. I have gone from being independent to totally dependent on my partner. I can still dress and feed myself but he provides all my meals, looks after the house, pets, laundry etc. I need a wheelchair when we go out and I am also on 24hr o2. This has come as a shock to me and I am struggling to cope mentally. I live in Spain and have not yet found a local support group, its good to know that you are all out there so at least I can have a moan occasionally. Bye for now.

[Pam1952]

Good morning, and welcome. You will find some great support on this community......we have members who have IPF, and I'm sure that someone will be along soon who can be of help to you.

I'm pleased that you have a supportive partner and hope that life gets a little easier for you.

Take care.

Pam XXX

[KCC08 in reply to Pam1952]

Thank you Pam. Nice to hear from you. Kath xx

[mrsmummy]

Hello and welcome to the forum.

[hufferpuffer]

Hello KCC , I am sorry to hear of your illness. there are quite a lot of PF sufferers here and I was talking to ' Johnsel' earlier he has the same as you and also lives in Spain . I expect the warm climate does you a lot of good. I hope you can get some good advice and I am keeping you in my thoughts, huff xxx

[KCC08]

Thanks for that Huff, looking forward to hearing from others with of. Kath xx

[Jaynair]

Hello, and welcome x

[Bagpuss1972]

Hello and welcome to this friendly forum. I'm so sorry to hear you are having such a difficult time right now but its good to hear that you have a supportive partner by your side.

There's lots of great advice, support and friendship here.

I don't have the same condition as you but can understand some of how you must be feeling about your loss of mobility as I had to deal with this issue too just over a year ago when I was diagnosed with pulmonary hypertension and scleroderma completely out of blue. I'm 45 and went from being a busy full time working mum to effectively housebound within about a week. Its hard to get your head round it all but things do get better. I now use a mobility scooter outside my home and am getting some independence back.

I'm sure you will find this forum really useful and will make some good virtual friends. x

[Lesley_ann]

Hi welcome to the forum,

My name is linda, I was diagnosed with pulmonary fibrosis in September 2015. I also have rheumatoid arthritis and fibromyalgia. I was manageing to cope with the pain,fatigue and other conditions relating to these deliberating likenesses, when I was diagnosed with PF. I felt like I had been hit with a bus, my PF is caused by rheumatoid nodules in my lungs and scaring tissue also fluid. Not only had I never heard of this disease but no one had ever mentioned that rheumatoid nodules could get into and damage the internal organs. I know its a very rare disease but I think that someone should have discussed this with me especially as I have been complaining about chest pain and breathlessness for a few years now.

Like you I seemed to be doing ok but in late Nov my lung function tests and CT scan showed a marked deterioration and I myself felt a lot worse. I'm going for repeat tests in a couple of weeks and the consultant as bought my appointment forward so I see him begining of March. I know we are discussing oxygen and if I qualify for assessment for lung transplant though I know that won't happen as I only have one kidney , I had the other removed 37 year's ago due to kidney disease.

Like you I live with my husband and my daughter who is studying for her A levels, my youngest son and future daughter in law moved back home last summer,they work shifts so there's not much time I'm on my own. As you said it's the lack of independence that frustrates, just doing the simplest of things wears you out.

I really wish you hadn't posted on here, as in you have posted because you have this horrid frightening disease, but it is nice to meet someone else who knows what I am going through, there aren't that many with PF.

I wish you all the best and hopefully we can stay in touch and compare notes. Take care Linda xx

[Salmo]

Hi and sorry that you are posting on this site and that your condition has taken a turn for the worse but I am sure that this forums will be very helpful for you. I live in a very remote part of Scotland with no support and have found it to be a great help.

You may also want to check out an American IPF site. It can be accessed through the link below and has a lot of members from all round the world and contains a lot of useful information and support. The article in the link may not be totally appropriate for you as you have had IPF for a while but the article also has links to other useful sites for folk with IPF that are certainly worth checking out.

inspire.com/groups/living-w...

There are also supposed to be a number of facebook groups but I've not been able to find links to these.

You did not mention it, but are you on either Esbriet (Pirfenidone) or Ofev (Nintedanid) to slow the progression of the disease ?. If not then they are certainly worth considering though both can have side effects. Have you also been checked to see if you need reflux/GERD medications as these may also affect disease progression.

The final issue is whether you are being treated by an expert in IPF/ILD or a general respiratory consultant as this might make a difference to how effective your treatment is.

Irrespective, the best advice I can give based on my experience and comments from so many other folk with IPF is to take as active a role as possible in understanding your disease and your treatment to make sure you are getting the best treatment possible and also doing everything you can to help yourself.

Best wishes - Salmo

[KCC08 in reply to Salmo]

Hi Salmo, thank you for your reply and the information. I have found this site and the comments given, very helpful. I do have medication for reflux/GERD as I have a large hiatus hernia. I take Prednisona for my PF (not ipf as I know the cause of my illness, methotrexate, used for my RA). I take 45mg each day. I was to have Perfenidone but it was decided that my lung function was not good enough, it is an expensive drug and was told that you have to fit certain criteria to be allowed to have it.

As far as my consultant is concerned, he deals with most lung complaints, not just PF. I was concerned, so went to see a PF specialist in Barcelona, privately, but he agreed with all that was being done, apart from the fact that my methotrexate had not been stopped when first diagnosed 14months ago.

I have done quite a bit of research into the illness and am trying some alternative herbal medications.

My main problem is my lack of a positive mental attitude, which at the moment seems to evade me. I am trying to see things in a positive light but still struggling. My sisters are both coming to visit me soon so I am looking forward to that and hope that they can help me get sorted. My partner is very supportive, but its difficult for him too.

Thanks again. Speak soon. Kath

[Ella52 in reply to Salmo]

The Facebook active site is a group called Pulmonary Fibrosis UK- it's a great group with excellent support & advice. It's a closed groupmso you would send a request then be added. Hope this helps.

Elaine

[KCC08 in reply to Ella52]

Thank you Elaine,

Have sent request to join group. Looking forward to to hearing from other members.

Kath x

[Ella52 in reply to KCC08]

Great Kath you will find a wealth of knowledge & support on there & either sufferers or carers of sufferers from all over the world. Maybe see you on there soon. Elaine x

[Hidden]

G'day Kath

Just came across your post, sorryt to hear of your health concerns.

My wife,Susan, is now 7 months post transplant (Bilateral lung TX), first diagnosed in May 2014.

Susan had similar problems as you have mentioned, if there is any info we can help you with, whilst on our journey, please remember we are only a keyboard away.

Will (Australia)

[Johnsel]

Hello Kath

I am Johnsel's wife Carole. John also was diagnosed with PF just over a year ago and also has a very large hiatus hernia which is inoperable due to damage of his esophagus caused through reflux. Also like yourself it was very manageable until November when he stupidly started some renovation work on our bathroom and went downhill from then on, also had a spell in hospital, and again like yourself we live in Spain! What part of Spain are you in? Our hospital likes to put you on strong steroids and ever since he is a changed person, no longer interested in anything etc, a complete change of personality.

The reason I am replying rather than John is he suddenly felt frightened reading of others who were worse than him, even though I pointed out how cheerful and friendly they all are. I find this site a great help to me and I pass on all the tips to him that have helped others.

Take care and good luck and let me know where in Spain you are, you never know you maybe just around the corner!

Carole

[KCC08 in reply to Johnsel]

Hi Carole, its nice to hear from you.

Sorry to hear that John is feeling frightened, I do too, not for the same reasons but because of the uncertainty of the future. I hate not being able to do the things I used to do, I feel like I let my partner down every day as he has to do everything, washing , cleaning , cooking etc. He is very good with me and does try to push me to do a bit more for myself, I can dress myself, feed and wash/shower, so that's half the battle, although I do get out of breath very easily. I don't think we are very near to you in Spain, John did tell me where you were, but i forget, we are in the south, Costa del Sol area, but slightly inland.

I too am on steroids, prednisona, 45mg each day. My face is now moon shaped, very round, and I do have some other side effects to varying degrees, but nothing major.

I have started doing my cross stitch again, so that fills up some of my time, I broke my arm last November so was unable to do any til January, I find it keeps me calm. Good for my breathing, 24hr a day O2 is no fun. Reading is another good calming pastime.

Tell John to keep his chin up and that the better weather is on its way. Has he told the Dr. how depressed he is? I'm sure they could offer him some help. David is making me go out more, we are going for lunch today with friends, I was quite happy to sit at home but usually I feel much better after a few hours with lovely friendly company, it also means that he and I can talk to someone different, it does help. Don't forget to try and do something for yourself, it is not easy being a carer, you do need 'me' time.

Take care of each other and hopefully speak again soon.

Kath xxxx

[rubyred777]

Hi KCCO8, Just wanted to welcome you to the site. You have gotten brilliant replies. Hope they made you feel somewhat better. Your never alone, when you've got us! Your partner sounds to be a wonderful caring person. You are luckier than some, coping by themselves. Take care,Ruby🌹

[Semibreve40]

My husband Peter was diagnosed with PF (confirmation of IPF awaited) last November. Only one lung function test done so far and has to go for 6 minute walking test on Thursday this week. (Oxygen may need increasing for walking?) He has been on O2 since coming out of hospital November 16 - a shock to both of us. He is able to manage small amounts of time without O2. Like you, he has to use a wheelchair when going out - intersperses 5 minutes walking with time sitting. He also gets frustrated because he is no longer free to go out on his own, as and when he wants to. We attend a local church and find that to be helpful - not just services but the social aspect of it and knowing people are praying for both him and me. We try to go out as much as we can as being out and about seems to be helpful. Peter also has mild dementia and a heart problem so I need to push the wheelchair. Peter seems to have days which are better than others so I hope that will happen for you too. We live in Birmingham UK and are grateful that the weather is warmer now

[Ela66 in reply to Semibreve40]

Hi, Like you my husband was diagnosed with PF last year and has gone from a very active person to a sedentary one. He also had pneumonia last year that has had a lasting effect as he always seems to have infections and having to take courses of antibiotics. He can drive but cant walk but a few yards. he is on oxygen too and the noise along with his loud coughing are so annoying as I value peace and quiet. We too live in Birmingham UK. Yes the sun and warmth make you feel more positive. He is to see the Consultant on Monday. But yet again we are off to the GP for more antibiotics! Take care x

[et1942]

Hi, I am looking after my dear husband who was diagnosed about 16 months ago. He is not doing very well but medication is helping a little bit. Sorry to hear about you Kccos