On Thursday (2/03) as the co-surgeon was putting Clay back on suction yet again, he stated that this time he was going to give the suction a day or two more before switching to water seal to ensure that was all it was going to take to get the leak to heal. This meant that we were here for the weekend, which was doing nothing for Clay's spirit.
I have to thank friends Ellen and Jack for coming to our rescue, and to Jeff. As Clay's spirits were lagging I reached out to them to come by and help reduce his sense of isolation. Ellen and Jack were there the next day, Jeff came by that weekend. You provided a lift that he very much needed.
Friends Mark and Marjorie had stopped by when Clay was still in ICU, even brought "virtual flowers" since he couldn't have the real thing! Only an art teacher would have had such an original thought! A number of Clay's support group came by routinely to offer support and encouragement. Thank you so much to each and every one of you.
We also had two other special visitors those last few days in the hospital. The first was by my request also, Clay had been struggling with the acceptance of the transplant (I'll be going over that more in the future) so I asked if a single lung transplant that previously had IPF could come and speak with us; discuss what his experiences were, and how he dealt with each step along the way.
The gentleman and his wife (I didn't ask if I could use their names) came and spent some time with us. He had his lung transplant in August; explained that he is active in the IPF support group here at the hospital (for some reason we did not recall knowing anything about).
He stressed that we are traveling along a road that many want to be on but few are fortunate enough to get to. How long had Clay and I waited anxiously to not only be on "the list" but to leap to the other side onto post-transplant? According to this gentleman only 3% of IPF sufferers get a transplant and a new opportunity of life. Wow; 3%. Glad we hadn't known that number earlier!
And while each post-transplants' travel along this sacred road is unique to each individual fortunate to get here, it is also impacted by each person's body, habits, and reactions. This man encouraged that the more we talk and listen to others who have gone before us, the more we are at ease and we become with what is happening to us.
He encouraged Clay to remember how fortunate he is to have received such a wonderful gift, to acknowledge there is great instability at the moment with his body as it heals and adjusts to a new organ within, plus all the new medications he now has to take. His visit was very informative and uplifting!
Our other visitor was also an organ recipient; he received a heart about two years ago. He currently volunteers at the hospital as a Patient Advocate, especially for transplant patients. A common question (as we are discovering) is to ask if the organ recipient has had the opportunity to learn about the donor. This is also something I will be discussing more in future blogs. We have heard some amazing stories about donors and recipients; but this one immediately brought me to tears.
The man had been able to meet the donor family; he was a high school student, killed in a car accident in Spokane. There were many that benefited from the organs this boy had donated. Several of them were able to meet with the family; at what would have been this boy's graduation the organ recipients went up on stage together and received an honorary high school diploma for the parents. And this is only one story of many. I hope to bring more to people in the future.
On Sunday Clay was taken off suction, water seal was working. Co-surgeon even went to the point of clamping off tubes Sunday evening to make sure all was moving in the right direction. Sure enough, Monday morning all was looking good. X-rays showed no issues; no leaks.
Then it was up to each aspect of his teams to sign off on his discharge; PT was in and signed off, Respiratory Therapy signed off, transplant team signed off, Pharmacy signed off, nursing signed off, and who the heck else was involved signed off.
We were discharged, massive pill box in hand; 20 separate prescription drugs per day, equals 52 tablets or so per day, several change weekly. Which is why it took us until after 4 PM to get out. Staff thought we were doing really good too, they thought it wouldn't be until after 5!
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