Recent content by atrippet

I typed this long reply but I don't think it went through. I still have elevated enzyme levels and unfortunately liver damage. May be from cf in general. I take ursodial (actigal) 3x daily for treatment. I see a GI that specializes in cf liver disease in Denver at National Jewish.

Before I saw your post I was going to mention mycobacterium. It's a silent dropper. I was lucky to have it treated last year at National Jewish in Denver. Dr. Nick is the leading expert in mycobacterium. He writes the protocol for the cf foundation. It is typically slow growing. If you have...

I moved to Colorado with a higher altitude than I am used to. My o2 has definitely gone down. I've acclimated but I would think this would be dangerous. The air here is cleaner and I have almost zero allergies...in Texas I was struggling with allergies.

Dr. Ghogomu in Denver is wonderful. He comes recommended for people with cystic fibrosis. My husband had a huge bleed after sinus surgery and this Dr. saved his life.

I do something called an IPV. Or intrapulmonary percussive ventilation. It is an old school treatment. I had 3 different vests, they never made me cough anything up. I cough up so much now. I have been doing it for 7 years. I had a 15% lung function increase 3 months after starting. It is...

Need help. A dear friend of mine has a 9 year old son who needs a liver transplant. He unfortunately has a very active mycobacterium absessus infection that they have been trying to eradicate for years. His Drs want to talk to other Drs who have done this. They will have a better chance of...

My cf clinic does them. Go onto cff.org and look up cf care teams. Hopefully there is one nearby to call. They will either do them or no where to get one.

Thank you everyone! Just saw these posts. I've had a sick fall with back to back hospital stays. Home ivs ended up costing me $200 for one week. I could not opt out of supplies even though I already had that stuff. The infusion company said I had to pay for all. At least it got me home. I...

Jaimers...oh yeah the shortness of breath has kicked into high gear!

LL, Thank you so much for all of your info! I read it a while back and then I tried to reply but I was in the hospital back to back..Sept and Oct..it's been a rough fall. The hospital I go to in Austin is so old school the Wi-Fi was incredibly sporty so I just read and slept. I also couldn't...

I called Compass (cf legal hotline) in June and they have not been able to help me prior to today. I finally got someone...named Aaron who is helping me nail down a Medi care Advantage plan that seems to be good and may allow me to get home ivs w a $100 copay. I'm calling tomorrow to verify...

I'm not eligible for many supplemental plans bc I am under 65. The only one I'm eligible for is $360 a month...add in straight medicare and PPD plan. Nit affordable.

Yikes! $35 for a pump is still pretty expensive. I appreciate the response though.

Thanks!! Ughh that is so sad.? I saw her post and while it sounded like a good deal, I know my Dr would never go with it.

You have come a long way. Congrats for all the leaps and bounds you have made. I understand the baby fever. I have a 2 year old and I'm 34. I cannot physically take care of another child. It's something I just know I can't do. It does still hurt. I have cf liver disease but it is stable. I...