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← Return to Pulmonary Fibrosis*
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Lung Health | Last Active: Nov 14, 2023 | Replies (424)
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I do try to be realistic. Mine is also 75 and not in good health, with diabetes and a kidney transplant 3 years ago. He does not yet know that this is not a cure. I've told him but it is not registering. He's only been diagnosed a little over a month ago. But, we have to go through every possible route. The VA doctor is prescribing him Esbriet and she said she has many patients doing pretty well with it. We are trying to enjoy every day and be cheerful. What did you plan to do when he was gone? I don't want to live with my children, although the girls have offered. I have 11 grown children now. Will you please tell me your story so I can learn from it? thank you.
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Mary, I will be happy to share with you the seven year journey after my husband was diagnosed with pulmonary fibrosis. He felt like he had it way before then because he was always easily winded. We went to the Mayo Clinic in Jacksonville to get his acid reflux fixed. It was there that the Drs confirmed what his pulmonary Dr in Georgia had already suspected. They think that his acid reflux was probably a contributing factor. Also, he had two uncles to die with the same thing years ago. So, we traveled to the Mayo Clinic every six months to monitor his progress. They really didn't offer him any kind of treatment at first because there wasn't any. The first medication was just coming on the market and his Dr was reluctant to prescribe it because of the terrible side effects. His care was more of a preventive treatment because he easily caught everything. And every time he got any type of infection it was a set back. And you never recover back to where you were. He did pretty good for several years. Then as his breathing declined, he was on oxygen at night or as needed. He got a portable oxygen concentrator and we made several trips. But he often would tell me his breathing was getting worse. And as his need for oxygen increased, we had to get the tanks and a large concentrator for home. At that time, I started to think about what we needed to do. And when the Dr at the Mayo told me I was going to need some help and that we needed to get in touch with a good Hospice program, I suggested that we sell our home and move close to our son. He is the director at a senior living home and I felt like he would have all the contacts we were going to need. So, that's what we did and I am so thankful with God's help everything just fell into place. We had eight months in the house our son found for us to rent. I am now currently building a small pool house in my son's back yard and hopefully that's where I will be.
I would love to talk to you and anyone else. I did join a group on line called Inspire. The pulmonary fibrosis group was most helpful. I know you probably have a lot of questions. I would love to hear from you.