joe-murray
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I have cut down on my outings and plan to self sequester once it appears in my area. I have already stocked up on dry goods (Kleenex, paper towels/wipes, etc.), meds, and food – especially shelf stable food. I have also keep some cash on hand in case it’s needed if and when the virus is detected in my community. I can still go out for fresh air, sun, and exercise but not with or around large groups of people. This is my way of coping with a unique challenge to my well being in a challenging time.
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Zee I had a lung biopsy that gave a definitive dx of IPF. That was Feb. 2018. I use spiriva respivat inhalor (two puffs once a day) and have very little or rare cough. Good luck and please do get a second opinion or a new pulmonologist.
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I was recently evaluated at Jewish Hospital in Louisville after losing 90 lbs within 7 mos. I had thought about the financial cost (will my insurance cover the medical expenses) and learned they would but I would have a $5k catastrophic limit to reach but this is a small amount as compared to the actual evaluation $48k and transplant cost (est. To run $700k to $760k). The housing cost to remain nearby post surgery/early recovery may be covered as well but that is a decision left for later as I learned that I would be listed but not for another 2 to perhaps 3 yrs as I was still too healthy for immediate listing. But at least I qualified! While the listing pending status was a surprise, it was not entirely unwelcome.
Now I am putting money aside for my recuperation when I will have to pay for most (if not all) of my in home care. My mother is 90 and only a niece and several extended family members are available to assist and they are all at least an hour away with their own lives to live. In addition, I am new to the area and have not met many people to establish new friendships and my old friends are far away. But all that being said, at 62 yrs old I have chosen life and to go theu whatever I must to have the chance to have a healthy future, if that is at all a possibility. And I am grateful to have any chance at all of achieving that future. Esbriet has helped as has diet and exercise with a strong positive attitude. My faith sustains me whole I try to plan for my future needs as best I can. In the meantime, I enjoy each day and celebrate each moment and thank God for the support he has sent my way. I would say it is a very personal journey of self discovery and realization. I wish everyone the peace of mind that comes with acceptance and the strength and stamina to fight for what they want. It has been two years since my dx and I am stable at 5 lpm. Charlene thank you for your leadership and support thru this forum and I wish everyone the best always. Looking forward to reading more interesting and informative posts in the days to come.
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Thw heat and humidity of this summer were difficult for me. I stayed in during the worse hours and days. Early to mid morning tmand early evening hours were easier on me. The combination of the two impacted me more than heat alone. This will be my second winter with IPF so I will see if the cold hits me harder than before.
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Congratulations on the approval! It can be a nerve racking process all by itself! I started Ofev two months ago and have been religious about timing doses exactly 12 hrs apart with food and water. Breakfast at 8 is fine when retired as I am but I typically finish dinner by 7 pm and then have my second dose with a banana. On occasion, I have skipped food (dinner at 7:30 for example) with no ill effect. Apart for a few bouts of diarrhea, and an few bloody noses, there have been no ill effects to date. Good luck John.
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I am new to the site and conversation, but I was diagnosed last year with IPF which a lung biopsy confirmed earlier this year. I went on o2 at 5 lpm 24/7 after surgery. To qualify for a lung transplant I needed to lose 100 to 110 pounds before evaluation and I have lost 56 lbs in three months. Now working at not losing more than 3 lbs per week. Next week, I will meet a transplant surgeon for a discussion on the in’s and out’s of lung transplantation surgery. It is the only cure and I am resolved to do all that I can to help myself. My family, friends, and faith give me strength that sustains my positive attitude.