Dealing with long term prognosis

[Vanessa Vaile]

All too often, as little as possible…

[Stefan Jones]

Took the words out of my mouth Vanessa

If I want an update on my prognosis I take the dog for a brisk walk

[Kathleen Sheffer]

Just inspires me to prove them wrong!

[Melainie Garcia]

This is a difficult topic. When I was first diagnosed, my daughter was 6 months old. I told my doctor I want to see her turn 18. Then I got on the medicine train. Now I want to see her turn 30. She turned 11 last May.

I think I will see her turn 30, but goodness gracious the work it is going to take to get there. Thousands of tanks of oxygen, an ocean of medication and an unbelievable fear of losing my insurance to help pay for it all (I have insurance at this time, but the fear continues). I’ll need a new Melody valve and to replace my defibrillator before she is 30. That’s if NOTHING changes. HA! We know things will change. My oxygen prescription might be changed next week to be not only 24/7 but full flow 24/7. Where will it go from there?

I think the most difficult part of a long term prognosis, is just that, not knowing what is around the corner. Life is an unknown. We just a few more unknowns than some others do.

What I always say, though is somewhat morbid, but true, “I ain’t dead yet, and it’s not in my plans for today.” I agree Kathleen, it makes me want to push harder and keep surprising people. However, with these lungs it become a bit more tiring each year.

[Melainie Garcia]

When I was first diagnosed my daughter was 6 months old. I told my doctor that I wanted to see her turn 18. Then I got on the medicine train. I told him I wanted to see her turn 30. She turned 11 last May. I think I will see her turn 30, but goodness gracious what a lot of work it will be to get there.

I will have used thousands of oxygen tanks, an ocean of medicine and my fingers will be permanently bent from crossing my fingers that my medical coverage from my insurance will continue to cover my needs. I will need a new Melody Valve and a new defibrillator before she turns 30. Who knows what else can be added to this list in the next 19 years.

Next week, my doctors and I will reevaluate my oxygen use. I may go from not only using oxygen 24/7 but full flow oxygen 24/7. If that happens, it will be another adjustment to my life.

I think the most difficult part of a long term prognosis is that you don’t know what is around the corner. Life is full of unknowns. I think that we just a few more than most.

Kathleen, I agree with you, it makes me want to keep pushing and surprising people. As the years pass, it gets a bit more difficult to push. However, I always say, “I ain’t dead yet and it’s not on my list for today.” Hopefully it won’t be for another 19 years. Smile.

[Brittany Foster]

Melanie,
even though you are going through so much, you sure seem to have the right attitude! I try to keep the positivity too but there are days when I need to let the sadness and frustration happen. I like your quote “It’s not on my list for today !”

It’s unbelievable to think about all the medications, oxygen tanks, and cannulas we can possibly go through in a life time. The good thing though is that ALL of those things are available to us and we have to have hope that there are more and better advances to come!

Keep up the good spirit !