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  • I had to go the ER about a month ago because I fell and broke my nose. My BP was low 94/40. They wouldn’t let me leave until my BP came up which was 98/55. I went to have my stiches out at my primary Dr office and my BP was 83/32 they were very upset. So they kept giving me water, juice, crackers. I stayed there for at least 2 hours. My Dr wanted…[Read more]

  • My lips, hands, and feet turn blue if I stand up. My O2 drops so quickly. It really frustrates my Pulmonary Dr. He said he just couldn’t understand why I drop so much with movement. It’s been this way for 11 years I guess. Since I started having pneumonia on a regular basis. As long as I keep my oxygen at 8 liters while I’m moving and take it slow…[Read more]

  • I have been having these same problems, bloating, pain, severe indigestion, a nausea in the morning after wearing my Bipap. I sometimes wake up during the night with indigestion. I take nexium but it doesn’t even phase it. It could be gastroparesis I think I’ll talk to one of my doctor’s next week to see if I should see a GI doctor. Thank you…[Read more]

  • I am so glad your surgery went well and you’re back. God bless you. So happy that you had great results.

    Sherry Berry

  • Hey Brittany,

    I’m glad y’all are talking about Duke. I have two appts coming up in June and Sept. I’m going to talk to them again about transplants since my last visit it was unknown that I had PH,CHF,and PF. My PH went undiagnosed for 10 years. I’m on a lot of medication, but none of the meds that y’all mention. I tried silendafil, however, I…[Read more]

  • Hi Brittany,

    Unfortunately I can’t use a POC. I’m on high flow, so I need above 6 ltrs to move around. I need 8 ltrs so it’s a no go for me. Someone mention liquid oxygen, but I’m assuming my insurance doesn’t pay for it, because I’ve been on oxygen for 10 years. I usually go twice a year to my Duke appointments. I don’t see the point in…[Read more]

  • I’m covered through my husband’s insurance. In October I’ll be eligible for Medicare through SSD. That will be two years that I’ve been on disability. So well see.

  • I travel about an hour when I visit my local doctors. They are about 50 miles away. My son always goes with me to change my oxygen while I drive or if he drives. When I travel to the Duke Clinic in NC it takes 5 hours one way and I always have someone with me my sons or husband and it’s always an overnight stay. I travel with 20 tanks my…[Read more]

  • I see both a regular cardiologist and a critical cardiologist who specializes in Pulmonary Hypertension. I also see a Pulmonologist specializing in Critical Diseases. I am on 10 medications. I was started on silendafil last year but I kept passing out and having severe headaches, so they took me off of it and are afraid to try anything else…[Read more]

  • I have shortness of breath all the time. I’m on O2 24/7 6 ltrs sitting, 8ltrs movement, and 10 ltrs exercising, in rehab I used a cannula on 10 ltrs and a rebreather mask on on 15 ltrs at the same time and I was good. I have to sleep elevated or I feel like I’m suffocating. I also sleep with a Bipap for nocturnal dyspnea. My pulse ox drops…[Read more]

  • Thank y’all for all the feed back. My days are free. I see my Cardiologist on a regular basis more than my Pulmonary doctor. My primary doctor makes sure that i don’t have to wait in the waiting room. He always make sure I’m doing okay. To call if I need anything. They do all work together. I’m my Pulmonary doctors only patient with my lung…[Read more]

  • Along with Crptogenic Organizing Pneumonia, Pulmonary Hemorsidosis, and Cronic obstructive Asthma. I know there is not a cure. The closest support group is over an hour away. any suggestions for coping. I’m on high flow oxygen 8-10 ltrs 24/7, I don’t go out in crowds, because of germs.

  • I had a second opinion. He suggested Emory Pulmonary clinic. I went the doctor didn’t even run any test and just because I’m over weight He said I probably just have an odoimmunine disorder, and needed to loose weight. Mind you I’ve been dealing with this for 10 years. Then I was referred to Duke University. Ended up in the hospital in ICU. Then…[Read more]

  • Sherry Berry posted a new activity comment 1 year, 5 months ago

    I am on a Bipap with oxy gen at night. Oxygen 24/7. Its very frustrating because I have to have some one with when I drive. To change my tanks or. I would have to pull over every hour. My oxygen provider gives me a hard time. Because I use a lot of oxygen tanks. The E tanks the big ones. I have to plan my week out. So I can go to an appt,…[Read more]

  • Sherry Berry posted a new activity comment 1 year, 5 months ago

    No my doctors haven’t tried iv’s. I just finished Pulmonary rehab. I just started on revatio or siledinfil? My oxygen level drops from 93 to into the 60’s and 70’s when I stand. They can not figure out why. So that’s why im, always on oxygen. My lungs are so scarred I guess is that’s the reason.

  • I loved working. I worked as an accountant for 25 years with the same company. The last 10 years were a big struggle for me with all of my lung issues. When I went for a lung biopsy I had no idea that I wouldn’t be able to return to work. I felt guilty about not being able to go back to work. My doctors tell me I’ve done my share. I deserve to…[Read more]

  • I have always had sinus congestion for years. I even had sinus surgery to help. I think it made it worse though. I use saline spray and mupirocin in my nose to keep from getting a sinus infection. I’ve been on O2 for 10 years. I am on 6- ltrs resting 8-ltrs regular activity and 10-ltrs exercising.I was misdiagnosed 10 yrs ago. I have PH,w/CHF…[Read more]

  • Sherry Berry became a registered member 1 year, 6 months ago

    • Hi Sherry! Sorry I’ve been away from the forums due to some personal issues. I want to make sure to welcome you to our site and let you know I am here to answer your questions as they come up. 24/7 oxygen for 10 years sounds…not fun. I’m sorry you have had this experience. Has your specialist offered any other treatments? Additional oral…[Read more]

      • No my doctors haven’t tried iv’s. I just finished Pulmonary rehab. I just started on revatio or siledinfil? My oxygen level drops from 93 to into the 60’s and 70’s when I stand. They can not figure out why. So that’s why im, always on oxygen. My lungs are so scarred I guess is that’s the reason.

    • Hi Sherry,
      Welcome to the forums. I am one of the moderators too along with Kathleen and am just getting back to the forum after needing to take a break due to being in the hospital over Thanksgiving. But I’m glad to be back. I have been on oxygen therapy and it is my only form of actual therapy for the lung related conditions along with a…[Read more]

      • I am on a Bipap with oxy gen at night. Oxygen 24/7. Its very frustrating because I have to have some one with when I drive. To change my tanks or. I would have to pull over every hour. My oxygen provider gives me a hard time. Because I use a lot of oxygen tanks. The E tanks the big ones. I have to plan my week out. So I can go to an appt,…[Read more]

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