Darcy
Forum Replies Created
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Hi Nina,
This disease is hard to wrap your mind around when you are symptomatic. I was diagnosed in 2016 because I had cancer. Subsequent CT scans have shown still mild disease with no progression six 1/2 years later. Last fall it turned out I had a severely prolapsed mitral valve and had to have heart surgery. The only reason I tell you this is because my pulmonologist thinks the shortness of breath I am having 10 months after surgery is just because of all I have been through and he really doesn’t think it is a symptom of IPF. This is great news if he is right because it means I still have a chance to get stronger again. So, I can see why you are a bit baffled. When you have IPF and no symptoms you think maybe you will be the lucky one that never sees the progression of disease. I wish we could be so lucky. One thing I tell myself is to enjoy life now because I know some day down the road I will be dealing with the lungs. But, for now I beat cancer and I beat heart disease and the lungs are currently hanging in there. I hope you and I and so many others with mild disease will keep it that way for a very long time. One can hope anyway.
Darcy
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Hi Chati,
I may not be the best person to answer this because I am still learning about IPF myself but, I believe the answer is that the course of the disease varies from person to person. Some people, like myself, live with mild disease for years while others progress more quickly. I was diagnosed six years ago and still maintain good lung function and do not require oxygen. I am 66 years old. My pulmonologist advised me to enjoy life and push myself physically. He said, “Some day we will have to deal with the disease but for now just live your life”. So, I am hiking, kayaking, bird watching, and picking huckleberries in the mountains. At some point lung function will diminish because it is a progressive disease and I don’t believe anyone actually escapes it. Hopefully, your father-in-law has decent lung function and his disease will progress slowly. That will give him time to continue enjoying life and give the people who love him time to spend quality time together.
Darcy
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Thanks for the advice Marianne. I think it is good advice to start the medicine soon even though I don’t have much in the way of symptoms yet. But I guess that is the point, right?
Darcy
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Michael, you hit the nail on the head. We have a progressive disease that is unpredictable and I dislike the idea of waiting until the condition worsens to take medication to slow the progression. Living with side effects may be the price we have to pay to live longer just as is the exercise which is not always easy when you don’t feel well. I plan to discuss this with my doctor again and also check to make sure insurance pays for it.
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Thanks Christine. It’s nice to know there are people who tolerate the meds and know how manage side effects.
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Thanks Jeff. That is helpful information.
Darcy
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Hi Michael,
I just saw my doctor today and was diagnosed with IPF. I had an inkling I had it because of an earlier CT scan that showed fibrotic changes although I had received no follow-up for that so today was the day I really knew. I don’t know what your situation is but my disease is still mild. I told my kids I was seeing the doctor today and told them I would group text them the outcome and then talk individually. So, I sent it immediately. I just felt they are all adults and we have to handle this together so no point pussy footing. I accentuated the positive news and let them know I am likely to have a few good years left so let’s just enjoy them. We can deal with the more difficult stuff when it manifests. If your disease is more progressed then it might be harder to talk about with your kids right now but I bet they would rather know so they can be a support. They are probably tougher that you think and might even get upset if you try to hide it. At some point we won’t be able to hide it, will we? So, better just tell them in the most honest way you know and let them know you love them.