Dear Machelle
My journey was somewhat parallel to yours. I was told in July of 2017 that I wasn't ready also. And we should come back in December for a re-check. So Deb and I decided to use that time to check some travel off of our bucket list. We took an Alaska cruise in August, a "Bike and Barge" trip to the Ionian side of the Greek Isles in October, and ended with a two week stay with friends in Puerto Vallarta. Each trip was memorable and very fun.
When I saw my pulmonologist on December 22 he was surprised at how quickly I had declined, and told me to get on a transplant list as soon as possible. You know the rest of the story for me.
My advice would be to enjoy each day as much as possible until you are ready for the transplant. Lung transplant is a wonderful option. It saved my life. I would certainly be on hospice now with out these new lungs. But recovery is a tough, and challenging time. He probably feels quite a bit better now than he will for several weeks/months after the transplant.
Enjoy today as much as you can.
Good luck with your knee, and speedy recovery to both of you.
Steve
Hi Machelle: This is actually from Deb Lewis. Thanks for your post and update. Steve was definitely on the speed track of deterioration with his diagnosis in October 2016 and by summer of 2017, the transplant team at the University of Utah said he wasn't quite sick enough (though he was struggling and felt like he was going down that slippery slope). By December of 2017, Steve had progressed so far with the disease he was labeled "urgent." Our hearts go out to both of you as you live with this progression of IPF. We are now living in North Scottsdale (almost in Carefree) and if you ever want to meet 1/2 way somewhere to share a meal and some conversation, we'd be up for that now that Steve can eat again! My number is: 435.640.5166 <3 Deb
My journey was somewhat parallel to yours. I was told in July of 2017 that I wasn't ready also. And we should come back in December for a re-check. So Deb and I decided to use that time to check some travel off of our bucket list. We took an Alaska cruise in August, a "Bike and Barge" trip to the Ionian side of the Greek Isles in October, and ended with a two week stay with friends in Puerto Vallarta. Each trip was memorable and very fun.
When I saw my pulmonologist on December 22 he was surprised at how quickly I had declined, and told me to get on a transplant list as soon as possible. You know the rest of the story for me.
My advice would be to enjoy each day as much as possible until you are ready for the transplant. Lung transplant is a wonderful option. It saved my life. I would certainly be on hospice now with out these new lungs. But recovery is a tough, and challenging time. He probably feels quite a bit better now than he will for several weeks/months after the transplant.
Enjoy today as much as you can.
Good luck with your knee, and speedy recovery to both of you.
Steve