Q: My husband has aggressive COPD and emphysema. Last year his FEV was 28%, he was just tested and dropped 10% in one year. He is now at 18%, he was referred for a lung transplant 2 years ago but decid
Hi Debra... Sorry you're going through such a rough time. I never heard of someone NOT benefiting from oxygen with such a low lung function, but I'm not an expert in every type of lung disease. I would encourage you to think about getting a second opinion, however.
As far as life expectancy, I'd prepare for the worst and expect things to continue to move quickly unless something happens to change the downward progression. If the worst doesn't happen, great, but at least you were prepared. That's not to say you should give up hope or that your husband should stop fighting, just that it's wise to put his affairs in order, etc.
Hang in there, and keep advocating for him!
Kathi
hi im not sure why im writing but i am im ronnei im 14 weeks out from having lvrs my other option was the transplant let ur husband know that its ok to hs i give u thumbs up for being a great caregiver i have a ear if u need one ronnei
I don't know how your husband is doing (I know 18% lung function is a death sentence) like him I have COPD and emphysema and and down to 18% lung function. I recently changed pulmonologist. My new doctor has put me on a new medication (Dulera) which has greatly improved the quality of my life, before I went on this medication I could barely walk from one room to another and needed 30 - 45 minutes to recover from taking a shower. Now my lungs are functions like I have 40% lung function. I don't know if Dulera will extend my life but even if it doesn't I can do things I haven't been able to do for years and will enjoy my life while it lasts.
My husband was at 21% at his last testing, a few years ago. In 1999, we were told he has end-stage COPD. After pressing the pulmonary doctor, he finally told us that typically patients with his numbers live 2-3 years. He is still here and all things considered he is doing well. For him, I think what has worked are the following factors: 1) After being totally house-bound, weak, pneumonia a number of times, had difficulty walking from the living room to the kitchen, a shower would really do him in, etc. - he decided he had to change his attitude. And, he did - I have never seen anything like it. He is amazing. 2) He worked really hard with his doctors to get on the medicines that worked for him. And no matter what the doctors or statistics said, if he felt like a medicine was not for him he got them to keep trying other or more medicines until he got on the right combinations. The combinations do change occasionally. 3) He makes himself do some kind of exercise (even though he has scared me to death). 4) He changed his diet and lost weight which has helped. *The attitude change seemed to be the biggest factor - for him and with that everything else followed. The first 3-4 years after being dx'd, I can't tell you how many times I prayed driving all the way home from work because I hadn't talked to him that day and terrified of how I might find him. It felt inevitable. My anxiety level has decreased 100 levels over the last 4 years. Never label anything a death sentence. Always have HOPE because sometimes that is all there is. I was 45 when he was diagnosed and did not want to be a widow at that age. I feel the pain you are experiencing and I know how terrified you must feel. I am so sorry you are going through this.
hii sorry to hear about your husbund hope everything goes well. i hope for the best buy i wuld like to know what are the signs and symtoms?
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Thanks Kathi, I appreciate the advice on a second opinion but we have had 4 and all the doctors say oxygen won't help. 2 of them were Lung Transplant doctors & 2 were Pulmonologist. So I think we're safe to say it won't work. He's been tested for Alpha 1 and all the other stuff also. We use to work at a hospital so the docs were excellent with us, they think he may have came in contact with a bio hazzard component while working there but they can't tell for sure. Thanks for the advice on putting his affairs in order, I am starting that now.
Thanks again, Deb