Thanks, Eric and Peggy – I really appreciate you so much for sharing your experiences. This has been and continues to be a such a gut-wrenching experience. I’m trying to stay positive, but we’ve been here for nearly two weeks and still don’t have a clue as to whether Dave will be listed. Between PF and this covid pandemic I feel utterly defeated.

My husband uses a regular cannula and an oxymizer cannula. Recently he had a rather nasty nasal infection, so I started doing the following cleaning regimen:

daily, I clean the terminal end and prongs with gauze or paper towels saturated with vinegar ( not immersed) and rinse off the vinegar with gauze or paper towels moistened with… Read more

I’m not able to post- I’m getting a comment that I’m using an inappropriate word. For the life of me I can’t find it!!

My (very limited) understanding from talking to the cardiologists is that he can’t improve his ejection fraction, which is due to the ischemia incurred during his heart attack in 2007. And, because he has chronically low blood pressure, they really can’t give him any medication  to help his heart work more efficiently.

I read that study too and couldn’t believe it! My husband has had RLS as well as IPF for years. He’s never been able to find anything to help,  and he’s also been on 50,000 IU ergo calciferol /week for several years now.

I’d appreciate any insights from the members. My husband is undergoing testing to be placed in a lung transplant list. He had a heart attack on 2007 and had 2 stents placed His cardiac status has remained stable for the past 13 years, stents patent, no other interventions, his ejection fraction has declined to 35-40%. Other than that his heart… Read more

A lung transplant dietician we are consulting with told us about Scandishakes. It’s a high calorie powder that you mix with whole milk. I think they may be @600 kcals. My husband has only had the strawberry flavor , but he ADORES it. I’m ordering some online ( as I do the very  high calorie Boost). They’re both a bit pricy, so do price comparisons.

Hi Charlene

I’ve been having to supplement my husbands diet with 2 high calorie shakes a day just to keep his weight stable due to loss of appetite and because eating most solid foods in significant amounts is torture for him. He loves very high calorie Boost (530 kcal), only comes in vanilla. He drinks one in the morning with breakfast. When I… Read more

Thanks so much for your input, David. I actually have an update – so the process is moving along.

Mayo Clinic (Jacksonville) has scheduled an initial appointment for Feb. 14th. All I really know at this point is that at this initial appoinment we will get more information about the testing series David must undergo – that it is about two weeks… Read more

Thanks so much for the words of encouragement, Mark. I read your response to David and we appreciate the practical advice. David did recently complete a pulmonary rehab program, and while I can’t get him in the gym, he does walk in our home and works on an arm and leg peddler. I’m getting some weights to work on his arms as well. He is a… Read more

My husband has been referred for lung transplantation and we are waiting for the call to schedule his initial appointment. I’m getting very anxious because he seems to be declining so precipitously and there doesn’t seem to be anything that can be done about it. For example, he completed a 6 minute walk test 3 weeks ago – now he can barely… Read more