I have been a member of this site for a few years, my hubby has COPD, Chronic Heart Failure, and is now in the end stage of both conditions. I have been his main carer for 10+ years, he is still cared for at home.
I on the other hand, until 6 months ago, was relatively fit, at 60 I had recently been diagnosed, last year, as needing heart bypass.
Then a bombshell was dropped in May this year, that I now have Pulmonary Fibrosis.
I had been struggling with breathlessness, thought to be heart related. But no, the lungs were the problem.
So lung transplant is out the window, because of heart, and heart bypass is out the window because of lungs, **it happens, you just have to get on with what you got, and make the most of every day.
I have in the last 6 months been reduced from washing and dressing hubby daily, to not being able to even wash myself, I now have carers in, as often as hubby.
I would estimate to have lost about 50% + of lung capability, in the last 6 months, not good. Methinks this disease is going to kill me off quicker than hubby, and he's only got a year or so left. But we have agreed who goes first will wait around for the other one, after over 40 years married, we intend to go on the next big adventure together, as always.
As you can probably guess from my witterings, I am a positive person, always finding the silver lining somewhere, even if it is hard to find some days.
I intend to participate more in the Forum, that is if you will accept me.
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Tuttifruity
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Dear Tuttifruity, I felt so moved by your post. So sorry to hear your story, but so glad you've decided to join us, as the people here will help you try to maintain your pms (positive mental attitude). Blessings and healing thoughts for both you and your husband. M.
What a lovely caring attitude you both have ,I wish both of you all the best
Take Care
Dorothy xx
Good Morning! You are right **it does happen and I am really touched by your courage and positive attitude. Take good care of each other, with much love TAD xxx
Of course we will accept you Tuttifruity. Bless you for coping with looking after your hubby for so long. I am sure it has been a challenge at times. We looked after my (future husband's) parents for 8 years - long distance. I worked shifts of a week on a week off and on the week off we did the 6 hour drive to Portsmouth to look after them for my week off and then back again for work. His sister looked after them in the meantime but she was ill with colitis. What a blow then to find yourself so poorly now.
Your positivity shines out from your post. What else can you be?
Pleased to meet you Tuttifruity and look forward to sharing stories and problems with you.
He Tuttifruity, I'm so pleased you introduced yourself!😁 it's a pleasure to meet you. You are so brave and positive and inspiring, I wish I could wave a magic wand to make all illnesses disappear 😃 sending you lots of 💟💟💟💟💟 love and rainbows, huff xxxxx🌈🌈🌈🌈🌈🌈🌈🌈🌈
Tuttifruity you brought a tear to my eye this morning, hufferpuffer's right, you are brave and inspiring. I wish you and your husband many more silver linings and hope that you're both getting all the care that you need. xx
Your post is so moving and I am in awe of your positivity. You do have a lovely, warm attitude in the face of real adversity. What courage and love you and your husband clearly have. I so wish I could make it all better.
Hi Tuttifruity, lovely to meet you. So sorry you are in a bad place at the mo, but what a great attitude you have, which I'm sure will help you through it. Keep posting even if it is just for a moan, lots of wonderful people on here. Take care xx
Hi Tutifruity I was very moved too on reading your post. You and your hubby sound such lovely and positive people and I wish you both the best. I hope the 2 of you are around yet for years to come. Meanwhile come in here anytime (the good and the bad) and we will do our very best to support you. We all understand lung disease here and you are amongst fellow sufferers. God bless this site and the great people on it. Sending lots of healing vibes and hugs your way. xx
What a great post, heartbreaking and heartwarming at the same time, u take care tutti fruity, we are all here if u need us xx Sonia xx
I hope you will find a lot of sincere & genuine people hear who'll hold you up when you're down.
My very best wishes to you both, wonderful to have been with someone for forty years, may you have more loving time together than you're expecting. Bless you for you lovely post. Puts ones moans into perspective. Peege xx
Hi Tuttifruity, of course your welcome, you post as much as you want to, the more the merrier.
I'm sorry to hear what you've been going through. Just caring for your husband all this time is bad enough but, I can't begin to imagine how hard it must be for you, now that you are sick yourself.
I don't know much about PF, but I know there are people on here with it, Offcut, has this among a lot of other conditions and like you, his catch phrase is PMA, so I hope someone might have some ideas to help with your breathing. xx
such a moving post , what a lovely positive attitude you have through such a hard time you both have had ,look forward to seeing you post more things on here remember it doesn't have to be lung or health related we like to hear all the things people do with they days hobbies , pets , ect , hope you both keep as well as you both can take care
I've not been a member very long but want to say welcome too - and that I feel humbled by your post. xx piggi
Hello Tuttifruity and a big welcome to the "family", because that's how I feel about the members here. My heart goes out to you and have so much admiration of your attitude. Long may you continue to,support each other. Jan xx
Oh Tuttifriuty, life has dealt you a very difficult situation, to have looked after your darling husband for over ten years,is wonderful,and now to be poorly yourself is the last straw. Hope you are getting lots of support,do involve the Hospice,they are so helpful in your situation,you are obviously a " glass half full" person. This site will help you no end,lots of truly inspirational people,always ready to offer support, very best wishes to you both, Bulpit
Lovely post - certainly got the tear ducts going. I hope you get the help you need to be around for your husband and vice versa as long as possible. Please keep us updated. All best wishes to you both xx
I can empathise so much with your post tutti - my old darling had congestive heart failure, diabetes, prostate probs (to name but a few) and was given 2 years max. - we had 8 years, almost making it to our Golden Wedding, just missed by 3 months. Like you I was healthy and active when it all kicked off but I feel I was much luckier because even though I'd been going downhill didn't get a diagnosis until the Thursday after his funeral. Like you we shared everything, the good and the bad - some of it was very bad but our very close bond seemed to give us both strength to look on the Up Side, and I've always found help is there, we just need to ask. Do please keep us posted and know that you have friends on here whenever needed.
A very sincere thank you, all of you, for accepting me / us into the family.
I do now intend to accept any help offered, though I'm still not any good at asking for it for myself.
I asked social services to be referred to the long term conditions team, hubby is already under them, they came, 3 months later, did the initial assessment (on Wednesday) and was told, because I was coping so well, I didn't qualify to be under their umbrella. ???
Well, you know what they can with their umbrella !!!!!!!!!!
I have got social care set up, referred myself, so at least I am now getting washed every morning, it was one of the things I found really difficult.
GP's so far have been useless, even denying me an appointment ? When eventually I got a telephone consult with one, I was told they could only prescribe any medication that the Consultant advised. I could not have Ventolin Nebules for emergency situations, when I couldn't breathe. So I use hubbies !!! they are not killing me off that easily!!!! My 3 mth appointment with Consultant, is now 2 months late, when one did come through last week, a letter came through the following day, postponing it, till when? who knows.!!!
Our daughter has given up work to look after us, she went in the other day and insisted I have a double appointment with a Dr, they are looking into it, ? I feel I need a Priorities of care, and a DNR in place, plus some other stuff. Will an apt come through, don't hold your breathe.
We have gone to the expense of getting daughter signed up as power of eternity, for both of us, so (they) can't push us around, and go against our wishes. As she is more tenacious than me, I can some major disscusions going on in the near future.
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Any info on a bulla on the lung would be appreciated!!
Lung Transplant
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