Jan Riche

I would definitely take one, my Mom had a foreign object in her body for years, a pacemaker, not quite the same but close. As for biodegradable, my whole body is biodegrade. If they could manufacture them maybe they wouldn’t have more likely to have said yes to my application. Besides, I am an unbearable optimist.
Jan

Just went online and found a number for Imogene rentals. 1-855-213-4372. I would send a link to the web site but that is beyond my tech abilities. At first getting to understand the O2 process is confusing but it clears up eventually. At least that has been my experience.
Jan

I too used Imogene. They are Medicare approved. They provided an in-home concentrator that went to 10 liters and a POC that went to 6 liters. What I really appreciated was the size of the in-home concentrator. It was small enough to fit in an over-head sized luggage so I did not have to worry about getting a unit at my destination. The POC had a 6…[Read more]

Meral ( @meraltemel ), I too had such serious side effects that I decided that my quality of life was more important than slowing down the progression of the disease. I stopped taking it. My doctor changed me to Esbriet. I don’t have any side effects from this medication. It is supposed to do the same thing.

I hope that is a possibility for you.…[Read more]

Lorena,
Thank you for your reply. It comforts me to know I will not be gasping for breath at the end. Breatlesssness (Lot of s’s there) is the thing I fear the most. If I can avoid it in any way I will do whatever I need to do. It takes me forever to do some things. I move at a snail’s pace. I used to do 10 minute showers now it’s an hour.…[Read more]

I forgot to add that I conquered the flash briefings. Listened to my first today.

Hi Charlene,
I too hope the medical developments are in time to help you. I have grown fond of you through this forum. I appreciate your honesty and openness. Those are truly wonderful traits.

As for your question about clinical trials, I am hoping to qualify for a clinical trial called Galapagos. I am hoping that the name which reminds me of…[Read more]

Hi Charlene,
Interesting topic. I had to change from Ofev to Esbriet about a year ago. The diarrhea got so bad it was unendurable. What quality of life I had was totally gone. I couldn’t leave home and couldn’t maintain my hygiene without difficulty. That was the determining factor. That experience left me apprehensive about Esbriet, fearful that…[Read more]

I am not sure if I am on the right track but I believe I am in the end times. I did not get approved for a lung transplant so there is no option for me. My need for oxygen is going up quickly. Just being still requires 8/9 liters, if I need to get up I have to use a separate source of O2 at 6 liters which puts me at 14 liters. Just to sit up in…[Read more]

Hi,
Four years ago I was diagnosed as prediabetic. My doctor suggested a class that is a cooperative effort between the YMCA and the CDC (Center For Disease Control). They put me on a diet that simply had me restricting fat grams. There was an app that helped me count them. I found that my eating very naturally included healthy food, as the only…[Read more]

Hi Army Pete,
Love the Army, was a WAC in the Vietnam era, but did not serve in Vietnam Nam or Japan where a lot of support served. I believe the Army made me grow up. Certainly gave me an education through the GI bill

As to OFEV, I had the same problem but changed to Esbriet and no side effects. No way to know if it’s slowing down the IPF but…[Read more]

Charlene,
I am truly sorry to hear that it’s still stressful for you. It must be difficult to see her on a regular basis. My heart goes out to you and I hope additional time will soften the blow.
Jan R

Hi Charlene, I know how it feels to be deeply hurt by someone close. In my 77 years it has happened. Sometimes my relationship has survived and at other times not so much. For me,it would be important to know if the person was just frustrated or meant to hurt me. I don’t know exactly how I would know and I don’t know if I have assessed it right…[Read more]

Hi,

This is my second attempt to use this forum. Hope it works. Oxygen suppliers have been one of the most trying thing about my IPF. Luckily I have had really good advocates that worked for my pulmonologists. One from Jewish National in Denver worked to get me set up with Enogen to rent a home concentrator and POC. I started out with overnight…[Read more]

Hi Charlene,

My IPF has accelerated over the past six months, my O2 has gone from 6 liters to 7-9 depending on activity. Even at 9 I have to go slowly with rests to let my sats recover. Showering has become an issue. I’m in a wheelchair because walking drops my O2 sats to low 70’s almost immediately.

To shower I get everything set up, shampoo,…[Read more]

Hi Bill,

I was sorry to hear about your struggles, makes my journey sound like a walk in the park. I am 76 (77 next month) and my O2 requirement has just gone to 7-9 liters depending, so I don’t do much that requires moving, which means that I don’t cook any more. I miss that a lot but didn’t have to sell my pots and pans.

Luckily I love reading…[Read more]

Hi Charlene, I’m sorry you had this experience, I know how much I need to forget for awhile that I have this condition. But I also know how difficult I find it to be in the company of a negative attitude, I don’t seem to care so much about the content of the conversation as I do the attitude.  My friends and I can talk about this disease and it’s…[Read more]

Hi Mark,

My esophageal motility disorder is a slow peristalsis, my esophagus is slow but not blocked.  The major thing I notice is how long it takes to eat.  The worst part of eating is that my food never tastes right, I think that is due to my meds. I keep thinking with a reduced intake I should lose weight but my lack of exercise seems to k…[Read more]