katygal
Member
- Joined
- Jul 24, 2018
- Messages
- 25
- Reason
- Lost a loved one
- Diagnosis
- 01/2018
- Country
- US
- State
- TX
- City
- Houston
Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017. Sadly, his breathing became affected shortly thereafter. In January 2018, his FVC was 52%, in April 2018 it was 48%, July of 2018 it was 42%, and in October 2018 is was 38%. I have read that breathing progression can fluctuate but on the average, the progression is pretty linear. My PALS biggest concern is being a burden to me and our girls...financially, emotionally and physically. Because of that concern, he is always hesitant to spend lots of money on equipment that MAY be necessary but not needed at this time, such as a PWC and lift chair. I understand where he is coming from but I also don't want to be waiting for 6 months to get a necessary item. He has chosen not to use invasive ventilation (he does use a Trilogy) and no feeding tube. So with all that said...I think regarding his breathing, he believes his past progression leans toward a continued progression and why spend all that money if he won't need a PWC or other expensive equipment for very long.
Being a planner, I want to try to make sure I stay one step ahead of his progression but I also want to honor his input at this time. I also know that our local ALSA may be able to provide things temporarily if that becomes necessary.
So, after that long post, I am wondering too. Based the experiences you all of seen and heard on this forum, does breathing progression typically stay pretty steady? At what point in FVC does hospice become a necessary choice? I am not trying to determine the end, just wondering if the odds lean in favor of major changes and purchases at this time? We attend Clinic next week and this is something I will also discuss with our team.
May you all have a special day with a special moment to remember.
Being a planner, I want to try to make sure I stay one step ahead of his progression but I also want to honor his input at this time. I also know that our local ALSA may be able to provide things temporarily if that becomes necessary.
So, after that long post, I am wondering too. Based the experiences you all of seen and heard on this forum, does breathing progression typically stay pretty steady? At what point in FVC does hospice become a necessary choice? I am not trying to determine the end, just wondering if the odds lean in favor of major changes and purchases at this time? We attend Clinic next week and this is something I will also discuss with our team.
May you all have a special day with a special moment to remember.