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Newly “diagnosed” caregiver
Hi All,
I am the son-in-law of a 72 year old military veteran who is in the process of being diagnosed. He was originally admitted to the hospital with suspected pneumonia, but a bronchoscopy was performed and the doctors are now suspecting interstitial lung disease due to the scarring in his lungs. Unfortunately, he had a PET scan 2 years ago – and he VA doctors noticed a small “haziness” in his lungs but said it wasn’t anything to worry about. My in-laws typically do not question doctors or ask for second opinions, so they took that at face value and didn’t think anything of it until recently.
Although a diagnosis has not be “confirmed”, my assumption is that due to his symptoms “suspected” will soon be confirmed. He is currently “OK”, but is on supplemental oxygen with numbers in the 90’s, but any exertion off oxygen drops his numbers in to the 70’s (and I apologize, as I am new to the numbers and may not be explaining them correctly). He is also having issues urinating, which I am assuming may be somehow related.
I am looking for any pertinent questions that would be crucial to ask the doctor in this initial diagnosis phase. My wife and mother-in-law are not the most thorough for lack of a better word and don’t really know what to ask other than “Is he going to die in 3-5 years, will he need to be on oxygen the rest of his life, etc. etc.”. I did try the Pulmonary Fibrosis Foundation website as suggested in another thread, but couldn’t locate the FAQ section for some reason. If anyone can provide a direct link, or some questions they know to ask as a result of their experience, it would be GREATLY appreciated! Thank you!
Terry
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2 Replies
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@tjndnd
Hello Terry, I found the site you were looking for. There are some questions for health care providers that you can use. There are many questions to be answered and each specific case is unique. Read through these. I would also suggest going on the hospital site where his treatment needs are being met. If you have more questions, please post. Mark
https://www.pulmonaryfibrosis.org/life-with-pf/maintaining-your-health
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@tjndnd
Hey, Terry. I am sure Mark’s website will give you lots of help. He is a wonderful source of assistance and encouragement. I just want to add that if I were in your position, I would ignore that “prognosis” of 3-5 years being what you are looking at. There has been some discussion of that on this website and it was pointed out that most of that comes from before Ofev and Esbriet came into play. Not only that, if you are looking down that road expecting the light to be an oncoming train, you may miss a lot of good things and good times…and that just might only be a light at the end of that tunnel! All the best to you and your family. Karen
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