Difficult times

[Vetty1234]

I have combined emphysema and pulmonary fribosis and have recently been turned down for a lung transplant due to having a heart condition....I'm 57 and feel like giving up . Life is a struggle .....

[Kristicats]

Hi Vetty1234

It’s good to meet you. Sorry to hear that you are not able to go on the lung transplant list if that’s what you had wanted to do . Some people on here are in similar positions. Is it a final decision about not putting you on the list or does it depend on how your heart behaves over a certain time? I have ischemic heart disease so I’m wondering if I too would be refused should I need to think about transplant.

Do you have other options that are available to you to improve your condition? There is a lot of support and advice on here from people with similar lung conditions so please speak up.

I have moderate emphysema and mild bronchiectasis.

Cx

[Oshgosh in reply to Kristicats]

Thinking of you

[sassy59]

Don’t give up Vetty1234, life must be such a struggle for you but we’re all here to listen.

I hope you’re getting all the care you need and the right medication too.

Take care xxxxx

[Katinka46]

So sorry to hear about your difficulties. Please try and hang on. This is a very friendly and supportive forum and there are many here who can identify with your problems.

All the best

Kate xxx

[CDPO16]

Hi Vetty1234. I'm so sorry to hear of your difficulties and situation. It's understandable that you feel so despondent. I hope that you will find that joining us brings you some support. Keep in touch xx

[Damon1864 Volunteer]

Hi sorry to hear about you being taken off the transplant list have they not offered you a lung volume reduction op? I would ask if you are eligible for it. Hope this helps and welcome to the site. Please don't give up we are all here ready to listen and support you. Have a lovely day and take care 😊 Bernadette xx xx 🌈

[Vetty1234]

Hi thankyou to everyone for kind words of support and encouragement....

that's not an option as apparently there isn't enough space left ....I am being referred to the pulmonary fribosis clinic to be assessed for some medication to try to slow it down but there's no guarantee I will be suitable and due to the current climate I don't know when this will be .

[Ergendl in reply to Vetty1234]

So sorry to hear that. Hope your appointment will come soon.

[Hacienda]

Sorry to hear this Vetty1234, I went on the Transplant List at 64, I was on it for 3 years Waiting for "That Call" it never came. Meetings With Transplant Consultant/Surgeon, and my Consultant, we all agreed I may never get a call due to the very few Antibodies I have never being able to Match. As I was quite Fit at that Time, We all agreed that to maintain a Good Life I would Continue my Fitness regime and Good Living. I have had "Valve" Procedures, Wanted to have LVRS, but Lung Tissue not strong enough. I have always been a Positive Lady, and I continue to do so. At nearly 69 now, I am Taking Each Day and making The best I can, A few hiccups along the Way. I would advise you to Keep Positive Hun, Re Plan your Daily Life. Exercise as I do. I'm on Oxygen. All the very Best Verity, You are still young at 57, You have a Great Future. Love. C. XXXX

[flo1]

Hi Vetty 1234 I was given 2 yrs to live back in 2009 I was diagnosed with a rare genetic lung disease 2 yrs prior that aged 46. I turned 59 in June. My point is don't give up..you can and have the ability to fight your way out of the tunnel no matter how dark it feels. I set to work on me and turned everything I had around even with a gene family I can't fight..nothing is impossible!! I am now finally contenplating TX double lung and due to covid had a April appt cancelled, they gave me a new one for Oct, my feeling is I got this far. I can get through to Spring, early Summer go and see ..TX is not always the answer you trade one set of probs for another etc..also bearing in mind covid is here to stay and a solution will be years off the rejection and immune suppressants after TX need thinking about before decisions, your effectively only better off if your prepared to hanker down for the long haul of solution finding with covid..your as unsafe as those like myself struggling at late stage 4 lung disease so trading probs with another set got a whole lot worse! ..Sometimes destiny is there to help us...take all and everything you get as a positive and make it work. Good luck. We are all struggling especially right now. I walk daily every day (with 3l oxygen) with my beloved dogs and moved to better air ..coast air., last year put on overnight oxygen.

.I am lucky but essentially this has saved my life, and no matter what happens even this bugger we are all facing I refuse to ly down. I fight.

[Caspiana]

Hi Vetty,

Please may I ask what heart condition you have?

Cas xx 🙋

[Vetty1234]

Hi I have empyema and pulmonary fribosis i have also had 2heart attacks and have a stent plus aorta regurge which is being monitored for now xx

[Hidden]

Hey sorry to hear your struggle 😔 we are all struggling in some way or another on this forum.but the main thing is your not alone and you will always find someone here for you, and like one of the members here said they was only given a short time left but there still here now fighting and its a very long time since they were told they wouldn't be here anymore.

What you have to try and do is live for today and the next day and make the best of the time you have here, try to laugh everyday its good for the soul, stay away from depressing stories especially the news very depressing, they should make a paper with good stories only its the only paper I would buy lol, and last try to eat healthy and try to get as much exercise as you can no matter how insufficient you may think it seems if your moving your keeping your heart going.

I really hope you pick yourself up I do understand I am in a dark place myself right now but knowing your not alone and knowing there is always someone to listen makes the world a whole lot better.

You take care and remember were all here to help 🙂🙃