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Patricia DuBose

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@patriciadubose

Well, today certainly ranks up there for being one of the worse days of my life. We arrived at Mayo-Jax at 8 AM, and after vitals were taken, we met with one of the tranplant doctors. He looked over and asked questions about Dave’s medical history and then told us how utterly hideous the surgical and post-transplant processes were and told Dave […] View
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  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic Transplant candidacy and pre-existing CAD in the forum Pre/Post Lung Transplant 2 years, 8 months ago

    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.

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic The Frequency of Changing Your Nasal Cannula in the forum Living with Pulmonary Fibrosis: 50+ 2 years, 8 months ago

    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…[Read more]

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    Patricia DuBose replied to the topic Under Construction: Thanks For Your Patience. in the forum Using Our Forums 2 years, 8 months ago

    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!!

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic Transplant candidacy and pre-existing CAD in the forum Pre/Post Lung Transplant 2 years, 8 months ago

    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.

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic Restless Leg Syndrome Common Among IPF Patients in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 8 months ago

    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.

  • Profile picture of Patricia DuBose

    Patricia DuBose started the topic Transplant candidacy and pre-existing CAD in the forum Pre/Post Lung Transplant 2 years, 8 months ago

    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 w…[Read more]

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    Patricia DuBose replied to the topic Your Preferences on Protein Bars/Shakes/Snacks in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 8 months ago

    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.

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic Your Preferences on Protein Bars/Shakes/Snacks in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 8 months ago

    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 g…[Read more]

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    Patricia DuBose posted an update 2 years, 11 months ago

    Well, today certainly ranks up there for being one of the worse days of my life. We arrived at Mayo-Jax at 8 AM, and after vitals were taken, we met with one of the tranplant doctors. He looked over and asked questions about Dave’s medical history and then told us how utterly hideous the surgical and post-transplant processes were and told Dave he…[Read more]

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 2 years, 11 months ago

      Hi @patriciadubose,

      Oh my heart ached for you when I read this update! First of all, I’m not going to sugar-coat it: that doctor sounds like an asshole. While he may be knowledgeable about transplant, outcomes and likely successes, ultimately he could have demonstrated far more compassion and empathy for what you and Dave are enduring and having…[Read more]

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 11 months ago

      Hello Patricia, I agree with everything Charlene wrote. I know of people who were denied at several centers but are currently living a wonderful life. Please take doctors advice and go to the transplant center he recommended. I mentor a potential lung transplant patient and at first he wasn’t a bonafide candidate but he has since improved his e…[Read more]

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    Patricia DuBose posted a new activity comment 2 years, 11 months ago

    Thanks Mark – I just need a good night’s sleep and I know I’ll feel better in the morning.

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  • Profile picture of Patricia DuBose

    Patricia DuBose posted an update 2 years, 11 months ago

    Tomorrow begins the start of my husband’s evaluation for lung transplantation at the Mayo Clinic – Jacksonville. I’m incredibly nervous! The days start @ 8 AM and the last appointments are around 3 PM. Since the days are packed with appointments, I’m worried how’s going to get his oxygen and when/where he will eat. Fortunately, his sister, who has…[Read more]

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 11 months ago

      Hello Patricia, please don’t worry about the oxygen. There will be plenty of tanks available in the department you will be in. They will most likely disconnect your tank and they will use their tanks. Clinic personnel will check on the amount of oxygen is left in the tank and will replace as needed. You only have to make sure he has enough for t…[Read more]

    • Profile picture of Patricia DuBose
      Patricia DuBose replied 2 years, 11 months ago

      Thanks Mark – I just need a good night’s sleep and I know I’ll feel better in the morning.

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 3 years ago

    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…[Read more]

  • Profile picture of Patricia DuBose

    Patricia DuBose replied to the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 3 years ago

    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…[Read more]

  • Profile picture of Patricia DuBose

    Patricia DuBose started the topic transplant evaluation criteria in the forum Pre/Post Lung Transplant 3 years ago

    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 walk…[Read more]

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    Patricia DuBose joined the group Group logo of Research and DevelopmentResearch and Development 3 years, 4 months ago

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    Patricia DuBose changed their profile picture 3 years, 4 months ago

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    Patricia DuBose became a registered member 3 years, 4 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 3 years, 4 months ago

      Hello Patricia, welcome and thank you for joining your pulmonary fibrosis forum.

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