This journey didn't start a year ago, but certainly the chapter shifted from anticipation, to the sudden reality that Shirley really was going to be receiving new lungs.
One year ago this morning, I was sitting in an office when I got the call to get home and get ready for a quick drive to Seattle. We had lived through two dry runs, we knew the routine. But this time things felt different. We had already made a drive to Seattle and back that week for a quarterly check-in (and had been told it could be another five years before Shirley got the call), but this time I didn't expect a quick round trip. This time it was really going to happen.
One year ago tonight, was our final night of waiting. After a leisurely drive up, including what would be her last meal with Margie, her Dad's girlfriend, we spent the day waiting around for everything to be arranged. As I recall, they were waiting for the heart recipient and none of the transplants could be started until all were in place.
I just reread the posts from those first 24 hours. The surgery started shortly after 3 am on Valentines day, and she was in the recovery room by 10 am. By 5 pm that evening, she had been taken off the ventilator and was using her new lungs on her own.
Fast forward one year. After that amazing surgery and the rapid progress those first few days, she endured all kinds of setbacks. But now, after being home for six months, Shirley continues to gain strength. She still has a lot of pain from the two compression fractures in her back. She tries some days to go without pain pills, but I believe those days she is still having some residual affect from the medications and she's hurting bad the next. I am trying to convince her that the medications are beneficial in letting her do what she wants without the discomfort and there is no shame in using them. This is something that is echoed by her doctors and her father, a retired Orthopedic surgeon.
A couple weeks ago, we went back up to Seattle for another scheduled follow up trip. For the first time since this whole thing began, they recommended no adjustments in her medication regime. Finally, things are stabilizing! But the best news was when her doctor said another follow-up wasn't needed for four months!
We did suffer one setback this past week. We learned that Jenny, the wife of one of Shirley's high school friends and a liver transplant recipient, had passed away. Jenny had been one of Shirley's inspirations throughout this ordeal. We are not only deeply saddened for our friend Ted, but it reinforces the fact that transplants may extend lives, but they come with their own complications and risks. Our hearts go out to Ted as he deals with his loss.
Thursday, February 13, 2014
Thursday, January 2, 2014
Tests, Tests and More Tests
(Editors note: I just discovered this unpublished update saved on November 22. Sorry for the delay in getting it posted -- GH)
It's now Friday: four days after Shirley came to the hospital for her initial outpatient testing. To recap, originally they were doing a white blood count study with contrast which was a two day test, similar to a PET scan. After the second test on Wednesday, they confirmed seeing some lesions on her liver. Yesterday, they did an ultrasound in the morning, but that didn't show up anything.
Next step was an MRI of Shirley's liver, which was performed Thursday night. The MRI showed pockets within her liver that may be infections. They then performed a biopsy to remove some of the pocket content so they can analyze and determine the next course of action.
They want to keep her overnight just to make sure there is no ill affect from the biopsy and she hopes to be discharged early tomorrow morning.
It's now Friday: four days after Shirley came to the hospital for her initial outpatient testing. To recap, originally they were doing a white blood count study with contrast which was a two day test, similar to a PET scan. After the second test on Wednesday, they confirmed seeing some lesions on her liver. Yesterday, they did an ultrasound in the morning, but that didn't show up anything.
Next step was an MRI of Shirley's liver, which was performed Thursday night. The MRI showed pockets within her liver that may be infections. They then performed a biopsy to remove some of the pocket content so they can analyze and determine the next course of action.
They want to keep her overnight just to make sure there is no ill affect from the biopsy and she hopes to be discharged early tomorrow morning.
2013 Retrospective
The other day, I began sharing Shirley's saga with a new coworker and referred her to the blog for the full story. In so doing, I realized that my last entry left a cliffhanger, as I never posted a follow-up to Shirley's MRI in late November. The scan showed no tumor or anything else of concern--that and the fact it took several days to get the results are my poor excuse for not following up with another post.
But as we turn the page on 2013, I wanted to take a moment to reflect back on such a life-changing year. One for which I will be eternally grateful but hope to never have to repeat.
As a matter of curiosity, I did some calculating the other day. Of the 365 nights in 2013, Shirley spent 182 in a hospital bed (three different hospitals) and 183 out. The medical bills are still coming in. Thank God for insurance, but at some point, I want to total it all up and see how much these new lungs cost.
Since her last hospital visit in November, Shirley has been doing very well. There are still days when she is very tired, but she does more and has more energy than I have seen since I met her eight-plus years ago. She had the energy to host her annual Christmas party. She did concede to having a potluck to reduce her workload, and bad weather and sickness kept the attendance to under 90, but it was still a task that in other years has totally wiped her out. This year, she bounced right back and was hostess for another party the next week for the exchange program that brought Joy to our family.
Our family wishes you and yours a very Happy New Year. May it be filled with good health and healing for all of us.
But as we turn the page on 2013, I wanted to take a moment to reflect back on such a life-changing year. One for which I will be eternally grateful but hope to never have to repeat.
As a matter of curiosity, I did some calculating the other day. Of the 365 nights in 2013, Shirley spent 182 in a hospital bed (three different hospitals) and 183 out. The medical bills are still coming in. Thank God for insurance, but at some point, I want to total it all up and see how much these new lungs cost.
Since her last hospital visit in November, Shirley has been doing very well. There are still days when she is very tired, but she does more and has more energy than I have seen since I met her eight-plus years ago. She had the energy to host her annual Christmas party. She did concede to having a potluck to reduce her workload, and bad weather and sickness kept the attendance to under 90, but it was still a task that in other years has totally wiped her out. This year, she bounced right back and was hostess for another party the next week for the exchange program that brought Joy to our family.
Our family wishes you and yours a very Happy New Year. May it be filled with good health and healing for all of us.
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