Yesterday I came home from work and couldn’t find Jim…what the??? I heard no coughing and there was no oxygen line in sight to trace his location. I then realized that I can no longer find him that way. It’s amazing how quiet our home has become; there are no nebulizer treatments or percussion vest running coupled with the TV that used to be blaring in order to hear over that entire racket.
Unfortunately, yesterday we had to go to Jim’s grandmothers viewing. She passed away leaving behind 9 children, 16 grandchildren and 19 great-grandchildren. Even though he was wearing a mask, I have to admit I was extremely anxious with Jim being around a tight crowd of people for the first time. Hand shakes and hugs made me quiver. I think of all we have been through: waiting for THE CALL, my nights of crying, helplessness and lack of sleep, his days and nights of treatments, gasping for air, body pain and overall fatigue…PICC lines, visiting nurses, hospitalizations, infection and loss of a true “normal” life through the years that he has been sick. And more than ever, the last 3 months of living in a hotel, many trips to and from HUP with thoughts of infection, rejection, vomiting, anxiety, more PICC lines and the thought of me possibly being alone…
The thought of anything happening to his new lungs actually terrifies me! Sometimes I just want to find a way to put him in a germ cloak…you know, sort of like Harry Potter’s invisibility cloak.
We are continuing to have more “firsts” which I will share with you until Jim takes his blog back.
Yesterday he had NO for the first time since surgery on 5/19 – Woo hoo! That’s a major accomplishment because it was the only thing that was really holding Jim back. Now he can work on eating more so he can gain weight, strength and really appreciate the fact that he was given such a precious gift of new lungs. Donor and donor family, as always, we are so grateful!
Recently a friend went to the in . If you haven’t read the entire blog, Jim’s donor was from North Carolina where we have been vacationing every year since 1996. I asked my friend to “Please tell NC I miss them and look out to the ocean and thank our donor.” Her reply to me when she returned was “Just wanted to let you know that our first day at the beach I said a huge prayer for you, Jim and the DF out towards the ocean. And then our last day I said another prayer that the 2 of you can get back there to the place you both love so much! You deserve it!” Thank you my friend for remembering. It meant more to me than you can imagine! It actually brought tears to my eyes then and does again now while typing this. :’) Both of us cannot wait to go back to NC next year! It will be an even more special place for us.
“So, how are you doing?”
“I can breathe!” Jim