Patricia DuBose
Forum Replies Created
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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.
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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 sterile water. The inside of the prongs I clean with interdental brushes (we use GUM proxabrushes) dipped in vinegar, then in sterile water. Air dry. I change out the regular cannula every couple of weeks and the oxymizer once a month.
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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!!
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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.
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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.
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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.
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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 get home from work I make a shake from the same high calorie boost, vanilla ice cream, berries, Greek yogurt or a little protein powder. He can always sip down a shake when he can’t muster the energy to chew
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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 in duration on consecutive days. I honestly didn’t think Mayo would be an option for us because I carry our health insurance through my employer, a large health system in the NE Florida area through Blue Cross Blue Shield of Florida. But because my health system does not provide any transplantation services, my policy will pay since Mayo is an in-network service provider for BCBSF. We live in the county just south of Jacksonville, so the Mayo Clinic is a short drive for us.
The other referral was made at the Shands Hospital-University of Florida in Gainesville. I have been in contact with their intake and finance staff from their transplant program, but we haven’t gotten the call yet to schedule our initial appointment. All I know is that they only schedule new patient appointments on Mondays. I’m a bit tentative about following up with Shands at this time until I have a better idea of the timeline with Mayo.
Does anyone have any experiences with these two programs that you could share, or some advice on how to get specific information about the programs that may be helpful to us?
We really appreciate your input.
Trish
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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 model patient: compliant with all instructions, never cancels or is late for an appointment. I’m on intermittent FML at work (with a very understanding team) and attend all of his appointments. Thank you for being available for our questions and concerns. We’re trying to keep the faith :-)c