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IPF - early stages of diagnosis...so many questions
Lung Health | Last Active: Jan 6, 2023 | Replies (8)Comment receiving replies
Thank you so much for sharing and this information. Congrats on your transplant and i pray you continue to do well! He is not going to be happy about diet changes lol. We discussed that last night, in the event he was put on the list and we had to get his bmi in line. His #s dip into the 80s and its even hit 70s but I'm not sure if his monitor is correctly calibrated, even so, it does dip since we have all tried it on ourselves and our #s stayed in the high 90s. He's doing another "home test" at the hospital this week and we're bringing his monitor as well. Right now I believe he's on level 2 with machine and was told to use it as often as possible. I am trying to keep him moving, we used to exercise 3x+/wk but with the fatigue and depression setting in, it's becoming more of a challenge. I am praying for good news tomorrow but to be honest not sure what good news would be? We were told the 2 items up for discussion would be transplant or order a biopsy.
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At least for me the biopsies are nothing. They take at least one biopsy every time they do a bronch. They give me anesthesia and I wake up sometimes with a little sore throat, but that goes away within a day.
I would bring up the oxygen level with the doctor, sounds like he needs more. From what my doctors said, better to raise the level and keep up the activity as much as possible than to keep it low. I was on level 5 at home all the time for a while before I got even worse (my O2 was dropping to the 30s). I had major issues with the insurance company not approving a machine that would go above level 5. At least my portable would go up to level 6. I also had major issues with the insurance company approving more than 2 tanks every 8 weeks, which wasn't enough for me to even make all of the doctor's appointments let alone exercise outside the home.
The transplant team said that as long as I didn't loose any more weight (BMI was 18) that I would still qualify. However, I lost more and they still did the transplant for me.