In the last 6 months I have been diagnosed with IPF, put on oxygen, assessed for transplant list, gone from walking 5 miles a day to barely able to make the next room. Laughing takes away my breath, crying takes away my hope. I look at my life and wonder where I have gone - everything is being rubbed out. Constantly being told how ill I am and how there is nothing they can do is taking its toll, I long to hear a positive word, a whisper of hope for a life where I will grow old with my husband, see my children settle and have their own families - I am 48. This illness is horrid and robs you not only of your health but of your dreams too.
I know my story is not unique but it is all I have. It is a story filled with a sadness that I'm sure many of you relate to but like me cannot bear to share with loved ones - I cannot stand to see anymore pain etched on the faces of my family and friends as they look at me,, knowing I am causing them so much hurt but knowing there is nothing I can do to stop it.
These words may never get read, but I cannot carry them around anymore, they are too heavy for an already too frail a body to hold onto - I need all the strength I have to face this new day.
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Joyh1
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I am so sorry - I wish I could give you that feeling that you crave. You are having such a tough time both physically and emotionally. You will find support on here and at least know there are others that feel as you do, which does help. I do so hope you get a transplant. Which hospital are you under? I am at the Harefield.
I cannot begin to know how you feel because although I have COPD I am quite lucky in the fact that it is more or less under control also I am nearly 20 years older than you. I still have hopes and dreams but I obviously have been able to complete quite a few.
Why don't you make a list of yours and let your family know what they are and those that are achievable even if it is via the internet go for it. Get a wheelchair (if you haven't got one) and bribe cajole people to take you out I think you may find your family are more willing than you think to help you.
Remember also that you can come on here at any time and someone will always get back to you at some point and by gosh will they help with advice or listen to your angry rants without any judgement and best of all some will make you laugh/smile so for a little while you can forget. I can assure you your words will always be read too (I am nosey I read nearly everything posted )
I am so sorry, maybe your story is not unique, but to you it is, and a devastating thing. My hubby is 69, and may or may not see his 70th birthday, and yes we are also living on a knifes edge, although we know a transplant is not on the cards, hopefully for you it will be, you have age on your side and previous good health, keep pestering for one, if you sit quietly they will let you. I wish you so much good luck, , xxxx
Sorry to hear you feel so ill and are so depressed. I have severe Emphysema so I dont know exactly what your going through, but I do know what it feels like to be so depressed you think there's nothing left, Your not alone everyone on here feels the same so we support each other.
Kim
Isn't that the hardest part, the pain on the faces of those we love and who love us and feel powerless to help. As one who is on end of life palliative care I think I understand.
My wife and I have a working strategy in that we set our sights on one day at a time and we don't compare everything to my condition. A smile is still a smile and a squeeze of her hand still warms my heart - if she can be brave so can I and we are stronger together.
Here on this site you have a place to share everything, hope, despair, joy, laughter - we are all here for each other and we all understand.
Press for your transplant and the very best of luck with that.
I would not ask is your glass half empty or half full but rather isn't the wine great.
I really wish there were words I could say that would make you feel better, depression is a big part of this illness perhaps you could ask your respiratory nurse to put you forward for some councelling and you must keep up you hopes and strength for going on the transplant list.
Speaking to family is the hardest thing to do, going on here is easier because many people can see it from your point of view and understand exactly where you are coming from.
Please keep on posting, I am sure there will be many more replies to you.
Joyh, your blog made my heart ache and I so feel for you and your family. Do please give the BLF Helpline a call and have a chat with them about your hopes and fears, they are very experienced and I'm sure they will be able to offer you some help and advice, but most of all they will listen to your fears.
The number is 03000 030 555 and calls are charged at local rates. Unfortunately they are only available Monday to Friday
I sent my heartfelt best wishes to you and hope you find the solace you seek. xxx
The one thing that is for certain is that your words have been read and understood by many of us. We are all at different stages with different reactions to medication and different degrees of decline.
We know only too well how cruel it is to have our activities cut back, even walking to the next room as you describe. We're your fellow sufferers of course, looking at each other's situations to try and gauge what is happening to our bodies and anticipate the next problem, or find a different way of tackling something.
The journey isn't an easy one, the story is difficult to tell, but it is important that someone knows and understands just what you are going through. They need to be there to support you and help you cope with the problems your illness throws at you. If you keep it all to yourself then they could be hurt even more, thinking that you didn't want them to know and causing more problems that way.
You can always call the BLF helpline on 03000 030 555 (M-F 10-6) for a chat. Let them give you some ideas of how to let your loved ones know and be a part of your life, rather than try and shut them out because you don't want them to feel the pain and anguish you obviously have.
You've already reduced the problem by writing on here - a problem shared is a problem halved !
i am feeling so sorry for you . and at 48 is a young age , i know how you feel i am the same they can not do any more for me i am 58 now had emphyemsa. for 5 years, from last june had tests and more tests. had a heart attack, ct scans 3 of them . then just before christmas i had angina attack , i am on lots of tablets as well as my inhalers. i have nodgules on my upper left lung a mass i was told , had a ct scan 2 weeks ago they told me its grown in size. and my right lung has nodgules now , before all this i used to get down , but i feel life has gone now i am mad with it but no one to blame only me , the cigs , i live on my own to much time to think , i loved life 5 years ago wish i could get it back i bet we all say this , sorry for going on god bless xx
I clicked on to your name & was surprised to see you live in the same area.
Lke you I also live on my own & get panicky at times when short of breath. I do not know whether one can directly contact others here to make friends, or visit, or meet for chats, but here is my email address - sue.kidd@ntlworld.com If you're feeling down, please contact me.
Joyh, every one of us understand your feelings. My heart goes out to you, I do hope you get the transpant you need.Please dont give up though, talk to you family, or at least the easiest one to talk to, or even to a good friend. Its a release to get it out, as i'm sure it was when you wrote it down. There are still things to get pleasure from, I delight in watching the garden birds, even though I would rather be dancing. Little things mean a lot. Try not to get depressed, ask for help, most of us are on medication for that too. Most of all, know that we are all here for you to talk to, and the helpline is only a call away, give it a try.
Dear Joyh, what a heartfelt post. There are some lovely, thoughful replies too. As some have said, I suppose taking pleasure from little things can be uplifting and showing and receiving love from family and good friends also helps.
All I can add is that I try never to have regrets. They don't help anything. My COPD has been caused by smoking and I am very glad that I have stopped, but I don't regret the years I did smoke. Why would I? I can't change them and I did enjoy it. So I try not to think in terms of 'if only ..' or 'I wish....' as it seems pointless to do so.
It can be hard to be positive at times, and you have had a really rough time, without doubt. You might not want to 'burden' your family with your worries (although I am sure they don't mind or see it as a burden) but you can always express them on here.
Very moving words. It saddens me when I read posts like that and the feeling of uselessness as I am unable to help. I really hope y0u get a lung transplant.
May I say please talk to your family. You may find that they, like you, need to talk about it. They have hopes, fears and dreams. My partner has IPF and he does not talk to me or show any emotions/feelings and it is tearing me apart. He doesn't even say anything to his sons during the little contact they make with him and as I have no family to talk I find it very hard indeed. When I try to talk about it I get very little response.
Unfortunately he is too old for a transplant but like you has gone from being able to walk 6 miles to being on oxygen in less than 6 months. I know I can't do anything about the IPF but I would like to fit in as much as possible in the time we have available before he becomes totally housebound. It is difficult to plan anything without talking.
dear joyh I have read your words three times and cant find anything useful to say except that I am thinking of you and hope with all my heart you get a successful transplant.xxx
Dear Joyh, I like you was 'normal' 6 months ago. I too have been sent home on oxygen with PF, not idiopathic but caused by rheumatoid arthritis. September 9th I was on our speed boat and pushing it up the slipway before going home. September 12th in hospital on 80% oxygen and what felt like more drugs than the pharmacy. November 27th at home and yes walking from one room to another left me breathless with sats around 65/70.
Today I can walk from one room to another still breathless but sats 85/87. I have been lucky in that I go to pulmonary rehab to strengthen and improve muscle tone to help the oxygen movement. I choose to take no notice of the prognosis and do everything I can.
My family and I had a discussion about how we were going to cope and decided to carry on as normal.
However I do not feel ill, the only thing not working is my lungs. I do not have any pain. So I am happy with my life, it is not the same. It is different and my goals are different. I will probably not be able to return to work but have another 6 months before that decision has to be made. I don't think a Chemistry teacher on 60% oxygen would get past health and safety!
Things I can tick off on my revised goals.
Showering on my own (albeit with a bath board).
Getting up the stairs in one go.
Cooking a meal.
Preparing veg.
Making a cuppa.
Going out with oxygen in a wheelchair, that was hard being pushed around.
Nicking my father in laws mobility scooter and taking the dogs for a walk, again not alone.
Depooping the garden. Just done that this weekend, tough one, my lungs do not like being squashed!
Driving with passenger and alone.
New goals
Get away in the caravan.
Work out how to take oxygen on the speed boat.
Go shopping on my own.
Cut down on percentage oxygen.
Sorry this has turned out about me, but I just wanted to say you can cope, take any help and home aid offered. Set aside a talk time, feel free to be down but talk and remember the more you act happy and positive the more likely it is you will become so. You will know it is working when your children are happy to argue!
I have every confidence that you can do this. Good luck, my thoughts and best wishes are with you and your family. Tina
Joy, my heart goes out to you and your family and I do so hope can take some small comfort from the caring people on BLF. For all the heartfelt comments there will be dozens more who, like me have been moved to tears by your words.
You write beautifully, would you be able to write to your children and husband? Words to be read now or at a time in the future?
It's so hard to watch your loved ones pain and fear at your suffering even when you're well. My 3 children lost their father fairly recently and it would help them so much to have something to treasure besides memories. Something to pull out when they need to.
I wish with all my heart that you and your family get your transplant. In the meantime would you ring the helpline, please. You never know, they could really point you in the right direction for the support you need. Wishing you the very best, Penelope
Hello Joyh, I think you are my friend from Pulmonary Rehab. Would you like a coffee or lunch on Thursday so we can chat? From meeting you, I think you are doing tremendously well in managing your condition. Alwayssmiling is right, we have to set revised goals and feel a sense of achievement when we meet them. Stop listening to the doctors because you and I know there is a greater power at work here!
Hi Joyh, I'm sorry to hear you are so 'down' with everything that is happening. It happened to me recently and everyone in this community was of great support and help, I don't have any family to talk to. Perhaps you could actually sit and have a real heart-to-heart with your family so you can all express how you are feeling. I would advise talking to your GP or consultant about how you are feeling and they should get you some support to help you through this period. The illness is bad enough on its own, the emotional aspects make things worse, more support emotionally would probably help. I hope your assessment gives you something to aim for. Take care, Richard
I echo what everyone else has said, isn't there some wonderful people on here?
Please believe me when I say that you are not a burden to your loved ones, you are not causing them any pain and they will want to be there for you and help you however and whenever you need it. But, they will not be able to unless you tell them. Think if rolls were reversed, would you want your loved ones to confide in you? Wouldn't you want to be there for them?
My dad had ipf too and even though he is no longer here, he lived with so much zest for life and positivity, it was infectious to all of us around him. He was accepted for a possible transplant, three days after he passed away, news he was soooo longing to hear. So what I am saying to you is, go out there and grab life by the short and curlies because even though you have ipf, there is still hope. Lots of it. Get that transplant, get pushing and start planning your future because you can still have one.
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