It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
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