IPF - Lets Talk about it... - Lung & Respiratory Disorders / COPD Message Board

kd7cot · 08-17-2005, 05:20 PM

I was diagnosed with IPF last December, and have been dealing with it's issues since then. I've noticed several threads that are close to this issue, and posted replies on them, but several are 'old' and may not be seen so I opened a new one. So that you know, I'm 45, have no other diseases, and have been tested for nearly everything under the sun. My single claim to fame is that my lung biopsy tissue was sent to the Mayo Clinic and stumped them too... My lung capacity is at 42% of normal, and I'm on night time oxygen and daytime as needed (using more now that in the beginning). I'm taking Actimmune (interferon gamma B), 10 ml of prednisone per day, and Pulmacort.
On the lighter side I love rock hounding, cutting and polishing rocks, and wire wrap jewelry making, fishing and camping with my family. In case the rock stuff raised a red flag, no it's not sylicosys (sp?) or 'rock dust disease' I started that after December and always wear an industrial mask. I have good days and wonderful days, and my lungs have tough days and good days

In short I'm doing great, and started this to try and help others who have this in their lives (one way or another) to have wonderful days too!

Hope to help!

Jeff

runnercb · 08-18-2005, 10:41 AM

Hi Jeff, you will recognize me from the other thread on ipf. I am just feeling very depressed about the whole issue. They did a ct scan and saw a mass but when they went in to biopsy it, it had gotten smalller, so they wouldn;t do anything, said it was probably just fluid. So now he doesn;t want to treat me at all?? I still can;t hardly walk 50 ft without stopping to catch my breath. And if there are steps.............. Just seems like there ought to be something they can do to make it a little easier for me to work. Okay I am whining now.....Sorry. Let me know your opinions. It is nice to have someone to talk to about this. Thanks.

kd7cot · 08-18-2005, 01:48 PM

Yup I recognise you and no your not whining! I'd be very frustrated too! Will your insurance let you go to another Doctor, to get a second opinion? I'd check that out. It's good that things were smaller, you may be earlier in the process...?... I hope so!

From what you've said though I bet prednisone would help remove some of the inflamation - that's what would change that fast without treatment, and you Doc maybe figuring that you body is attacking and clearing it up now. What type of work do you do? Is there a way to lighten the stress on you for a bit, while you work through what's going on? Oh! I've been taking a Vitamin B complex and also magnesium, I started these after reading about the antioxident benefits they have, and my Doc. said "Great!". Both of these are soluable so your body keeps what it can use and voids out the rest through the kidneys. Don't go takine mega doses though - too much of anything ins a bad thine

When you talk to the Doctor again, even your own have them do a 6 minute walking test. What they do is put a oxymeter on your finger and set you up with an oxygen tank. Then you walk back and forth - at your own pace (just normal) and they see what happens with your oxygen levels over the 6 minutes. To keep mine normal (above 90% saturation) we had to turn the oxygen up to 4 liters, my perscription was for 2 liters - as needed and at night. I can tell you that having the oxygen makes a ton of difference! I'm not a power walker by any means but I can get around, and as you saw I get out camping and stuff - though I'm glad my boys and wife do the heavy stuff

Liquid oxygen tanks come in two sizes (4 hour and 12 hour aprox.) even your general practice Doctor can do a 6 minute test and prescribe oxygen if needed, in fact it was my GP that gave me the prescription since I saw him first. make very sure you get a flu shot and a pneumonia shot this year before things start going around too! Also you need to learn cold avoidance, mostly wash your hands often and don't rub your eyes or nose, etc. All of that will help you protect what you have now!

Hope that helps, ask more questions if not

Jeff

kd7cot · 08-22-2005, 11:14 AM

So Runnercb - any updates?

Anyone else want to talk about IPF?

Jeff

runnercb · 08-22-2005, 10:32 PM

hi, not really much change. Haven't done muchbut wait and get more depressed. I am down to working 4 days and couldn;t even finish that today. Anwyay, I am hanging on for the moment. How are you doing?