Julie Grace
Forum Replies Created
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Dear Lori, My advice to you would be to live life to the fullest. Do that bucket list. Have no regrets. And don’t take no for an answer on a lung transplant. I speak from experience as I am now a young widow of a husband who had IPF. Your friend is probably @ a loss of how to comfort you. Sometimes it is hard to find the right words. Sincerely, Julie Grace
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My husband passed in May of this year. He was diagnosed with IPF 4 years ago. He was 64years old & was denied for a lung transplant due to having a bout with skin cancer in 2019. It was a steady decline for him, quality of life lessened & the need for 02 increased. He went on hospice in February of this year. The last few months his health declined rapidly with drastic O2 levels dropping with the slightest physical movements. The day the hospital bed came he passed within 24 hours. Towards the last month his appetite decreased & the last few days he barely would drink. Morphine & Ativan kept him comfortable. He couldn’t fight the fight any longer. It was difficult seeing him struggle to take those last few breaths. Even though he was on hospice it seemed as though when he would have scary episodes it was always during off hours when you would have a nurse on call & it took hours for them to arrive. You were in the trenches alone to get him through it & there was panic. I wish we would have exhausted all avenues for a lung transplant instead of accepting the denial from 1 institute. Prayers to all fighting this debilitating disease. Julie Grace
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Yes, have definitely noticed the clubbing in my husband’s toes. Gradual changes over the progression of the disease. Diagnosed in 2019. Is not painful.
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So touching to read the stories shared about Caregivers. Just today, my husband agreed to have a CNA come into our home to help him with bathing. This was a big step for him. His visiting nurse suggested it for a couple of reasons. The first was to see if having a professional assist with this task would help him to become less O2 depleted as when I assisted him and the second was to eliminate my feelings from being hurt if he became frustrated & lashed out verbally @ me. The nurse nor we want us to spend the little time we have left with each other bickering over things that could easily be eliminated by having a professional caregiver do for him instead. So wish us luck as we step into this new adventure.
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Thank you for the information on dry nose due to high oxygen concentrator. My husband also suffers with this & it makes breathing even more complex. He even gets frequent nose bleeds. He does use a nasal spray similar to Flonase & saline water spray. Will try some of the other suggestions in this forum.
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Regarding the Life2000 Ventilator, we were disappointed with the results. We felt that it didn’t make enough of a difference in our situation. My husband has IPF, perhaps it would work better for someone with COPD. It didn’t recuperate my husband any faster once he depleted his oxygen while being active. The website is respiratorycare.hill-rom.com/Life2000 if anyone wants to research it.
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Regarding the Inogen, we were satisfied, have the G3. There are 2 screen filters that should be cleaned 1x wkly & 2 columns that act like filters. The columns need to be replaced 1x yearly & cost $100.00 for the pair. You can purchase on Inogen site or through Amazon.
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I believe you can @ age 64 on disability.
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Has anyone heard of a Life2000 Ventilator? Our Pulmonarligist recommended to try it rather then a higher oxygen concentrator.
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This article caught my eye as my husband has also had a deterioration in o2 levels. He has been on 5 liters for quite some time now & when he went for a routine visit in December to the Pulmonarligist I questioned if there was a stronger O2 concentrator that he could have. They recommended we hold off if possible & revisit this subject @ his next appointment in March. Come February he really started struggling & had to get him back to the Pulmonarligist which was no easy task. The Pulmonarligist told my husband that his IPF was progressing & spoke with us about having a visiting nurse & hospice services. Instead of ordering a 10 liter O2 concentrator he wanted us to try a Life 2000 ventilator. So he sent him home to struggle for another week before we received a visit from a hospice nurse, but thankfully she ordered a 10 liter O2 concentrator which arrived within 24 hours, which made a big difference for him. The life 200 ventilator ventilator came a few days later, but didn’t do anything more for him then his new 02 concentrator. The hospice nurse also recommended him to take Lorazepam to help with anxiousness/ restlessness/ sleeplessness which has helped.