Zach Adman
Forum Replies Created
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I had an AE last November. I did not feel terrible before, but my wife noticed a big change in me and called my doctor. She ordered a CT scan and I was immediately admitted to the hospital. I was on a high dose of steroids and felt fine in the hospital but at the same time was being tested to get on the transplant list. When they released me from the hospital about a week later, I felt pretty well, given my IPF. I completed the tests I needed to get listed by mid January and then miraculously a day after being accepted for a transplant was called that they had lungs for me. I’m now just short of three months, post-op and doing fairly well. I have no idea if I’d still be around if I didn’t get the transplant, but glad I did not have to find out
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I wish! Sounds like your in very good shape. I’m not a doctor so won’t give you any advice, other than take care of yourself and best of luck.
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I was diagnosed with IPF five years ago. For the most part I skipped the anger and depression part by going straight into denial. It probably took a couple of years as the symptoms got worse to accept that what I had was real and that it would not likely end well. I then moved to the stage I believe you are in. Be thankful for every day. Make the most of every day and although we may have a better idea than most about how their life will end, truly nobody knows. That said we can be hopeful that some new pill or treatment is found in time to be a major “game changer” for those of us with the disease.
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I’ve had for over four years and major symptoms are shortness of breath going up stairs, running or crouching. I feel fortunate in that I can do most of the sporting activities I like to participate in but much less competitively. I’m on OFEV and have some of the typical side effects. Hope that helps.
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Does anyone know about anyone who has IPF, getting COVID 19? I would like to know how they are doing, if there is any special medical care they are receiving and if there is anything someone with IPF can do to make sure they get the best treatment if they do get the virus. Be safe! Good luck.
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I also try to avoid shaking hands. What I do, when I don’t want to go into a whole explanation is say I have a bit of a cold as I offer a fist bump. Most people then thank me for showing concern for their health.
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I had got insurance after diagnosis. It seems that the main problem would be if you are on oxygen. If not, it did put me in a more expensive category, but did not seem to be a problem to get it.
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Charlene
I normally have cereal for breakfast so started adding an egg for protein. At dinner, if I have pasta, for example, I’ll have some turkey slices afterwards as my protein.
As you can see, I’m not very imaginative in the kitchen.
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Typical ones, nausea, diarrhea. I still get them periodically, but much less than before.
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I’ve been on OFEV since March 2016. Started off fine then got the typical side effects. One tip that seems to help, that was recommended on some site I was on, was to have protein in the meal you eat every time you take your OFEV. Really seems to have helped.
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I resisted getting a Lungtransplant for six years after diagnosis. It was only when they told me I just had months to live that I decided to try and get on the transplant list. It’s now been 18 months since the transplant and I’m doing well. I can once again play tennis, golf, cycle and enjoy life with my kids and grandchildren. I would not rush into a transplant but I would not discount it as a possibility.