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Don's Fight With IPF

Welcome to Don's PostHope site. Don was diagnosed with Idiopathic Pulmonary Fibrosis in 2008. We've created this page to keep friends and family updated while Don awaits [...] read about page

Latest journal entry

Update on Dad

Yesterday our family had a meeting with Dad's team of doctors, his social worker and a couple people from palliative care to go over everything that has gone on and to all get on the same page. First, Dad has been in pretty significant pain from his mouth, so we wanted to know what could be done to better manage his pain. The team came up with the idea of giving Dad a self-administering pump so that he can better control when he gets medication. The CMV he's been battling is still the biggest issue, because the medication given to treat it (Foscarnate) is causing his white and red blood cells and his bone marrow to all be low and not regenerate the way they should be. The medication is also most likely the cause of the ulcers in his mouth. If he can have two negative CMV tests in a row, they can lower the dose of the medication. The good news is that last night, this week's test came back negative! He will be tested again next Wednesday, so hopefully that will also be negative and they can start to lower the medication. In addition, Dad still has some areas that show (most likely) a fungal infection in the old lung and possibly the new one. The team wants to do a bronchoscopy with biopsies and/or cultures, but with Dad's blood cell counts too low, it's too risky to do it at this time. We were told that we should be prepared for at least another month in the hospital, if not more. However, as anyone who has ever dealt with serious illness or injury knows, as much as we can try and predict the way things go, it's not always in our hands. We are hopeful that Dad's strength and resilience, along with the team's expertise, will allow him to get strong enough to get out of the hospital earlier than their predictions. Dad has fought unbelievably hard to get to this point and, though things are complicated right now, he continues to show unbelievable determination and fight. On Tuesday, despite having a low-grade temp and having the pain from his mouth, he got up, took a few steps with his walker, and sat up in the chair in his room for over an hour - he even read the paper (though with the upcoming election, this may or may not be beneficial for Dad's health :) ). Thank you for your prayers, concern, care and positive thoughts - it is all so appreciated and helpful. We look forward to watching the Nebraska game (Huskers are ranked 10 in the nation!!) with Dad in his room this weekend. It has now become common knowledge among the doctors and nurses that Dad's room on Saturdays is the place to be - we watch College Game Day (can't get it on the hospital TV's so we stream it on the iPads, complete with surround sound thanks to our portable speaker) and always bring in some sort of good food during the Nebraska Game. I hope you all have a good end to your week and Go Big Red!!