Today, Shirley FINALLY got the call we’ve been waiting for. The transplant review committee met today and formally approved her placement on the lung transplant list at UW Medical Center. The only remaining steps are a double-check with her insurance carrier, and a tissue type cross match test. We’ll head up to Seattle next Tuesday to take care of the cross match.
Now the type of waiting changes, for the next call may well be a life-changing event. According to the transplant team, the average wait is about 144 days. BUT, every year since they started the lung transplant program at UWMC, they have had one patient who received “the call” on the first day they were made eligible. So it could come any day.
So we will keep the posts coming as we prepare and wait. I tried to figure out some way that allows you to “subscribe” to the blog so that you are automatically notified of new entries, but if that feature exists, I can’t figure it out. [Help me out any experienced blog readers if you know how to do this.] As an alternative, I’m going to create a couple of e-mail distribution lists. One will be for those that want to be notified of each new entry, the other for those that just want to hear once Shirley actually has her surgery. Please let me know if you wish to be part of either of these lists by sending me an e-mail (gdharris77@gmail.com).
Until next time…
Greg (& Shirley)
Wednesday, August 20, 2008
Monday, August 18, 2008
News!
After months of waiting, the journey to get ON the transplant list appears to be nearing an end. Shirley received a call earlier today that the cardiologist has reviewed her case and had signed off. They have decided that a final, formal review by the Review Committee meeting should be done on Wednesday, but this appears to be a formality. They have asked her to come to Seattle for Type and Cross-match testing. This is definitely a good sign.
We’ll post more after we hear back from the committee.
Greg
We’ll post more after we hear back from the committee.
Greg
Saturday, August 16, 2008
Frustrations mount…
The days continue to tick away, yet we have no news from the transplant administrator’s about Shirley officially being listed. Based upon the last few conversations Shirley has had with the transplant coordinator, she is no longer waiting for a full committee review. Instead, it’s only the cardiologist’ review of the follow-up stress test results that needs to be signed off.
The follow-up test that was ordered was completed in early July. But as has become the theme of this saga, the CD with the test results was not sent to the Medical School by the staff of the Oregon Clinic. Two weeks after the testing, Shirley learned that the results hadn’t been forwarded to Seattle. She then went down and picked up the disk and shipped it herself via next day air.
And one might assume that next day shipment would put something in the hands of the recipient the next day—but this isn’t the case when shipping to a big university. It made it to the campus mail room, but took another couple of days to reach the transplant program office.
From there, the disk was delivered to the cardiologist’s office. But when the cardiologist went looking for it, no one could find it. Apparently a temp took possession of the disk when it was transferred, and no one has seen it since. Now Shirley is trying to find out if another disk needs to be sent up or if the missing disk has been found. It’s vacation season and we’re having troubles getting people to return calls.
This was not the first time test results didn’t make it to Seattle in a timely fashion. Previously, a whole battery of tests results were never shipped up (after over two months) and Shirley had to scramble and run over and pick up copies to hand-deliver when we went up to Seattle in June.
Who knew there would be so much waiting just to get ON the waiting list.
Until next time,
Greg
The follow-up test that was ordered was completed in early July. But as has become the theme of this saga, the CD with the test results was not sent to the Medical School by the staff of the Oregon Clinic. Two weeks after the testing, Shirley learned that the results hadn’t been forwarded to Seattle. She then went down and picked up the disk and shipped it herself via next day air.
And one might assume that next day shipment would put something in the hands of the recipient the next day—but this isn’t the case when shipping to a big university. It made it to the campus mail room, but took another couple of days to reach the transplant program office.
From there, the disk was delivered to the cardiologist’s office. But when the cardiologist went looking for it, no one could find it. Apparently a temp took possession of the disk when it was transferred, and no one has seen it since. Now Shirley is trying to find out if another disk needs to be sent up or if the missing disk has been found. It’s vacation season and we’re having troubles getting people to return calls.
This was not the first time test results didn’t make it to Seattle in a timely fashion. Previously, a whole battery of tests results were never shipped up (after over two months) and Shirley had to scramble and run over and pick up copies to hand-deliver when we went up to Seattle in June.
Who knew there would be so much waiting just to get ON the waiting list.
Until next time,
Greg
Monday, August 4, 2008
Waiting and waiting and waiting…
We knew that once on the transplant list, we’d have to be patient and wait for a suitable donor to come along. What we weren’t prepared for was the wait just to get on the list. It’s now early August and Shirley still isn’t officially on the list.
We made our first trip to Seattle to be introduced to the transplant program in February. While there, they did a variety of tests and took 17 vials of blood for a battery of tests. They also gave Shirley a full page list of additional tests to be done back in Portland. The last of these were completed in April. But due to some mix-ups, some of the test results were not forwarded to the transplant program for a couple of months.
Finally, in June, we want back up for another visit. This was our Orientation session and included meetings with all sorts of people. I’ll devote another entry to describing this visit in greater detail.
Coming out of this visit, we were given the strong indication that Shirley’s case would be reviewed in the next week or so and she’d officially “on the list”. Alas, a week later, we learned that the team’s cardiologist had a concern about a small side artery on her heart. They wanted to do another test before placing her in the program. The test was completed—and yet again, the test results had trouble making it up to Seattle. Once they finally made it up, the issue was put to rest.
Then, the next weekly review committee meeting was cancelled due to vacations, and that takes us to the present. Each Wednesday (committee review day) brings the anxiety of wondering whether her case will be heard. Every piece of evidence suggests this step is just a formality—the head of the transplant program called Shirley’s pulmonologist and said she was an excellent candidate. We just can’t seem to get over this last hurdle.
Two more days until the next Wednesday. Maybe this is the week.
We made our first trip to Seattle to be introduced to the transplant program in February. While there, they did a variety of tests and took 17 vials of blood for a battery of tests. They also gave Shirley a full page list of additional tests to be done back in Portland. The last of these were completed in April. But due to some mix-ups, some of the test results were not forwarded to the transplant program for a couple of months.
Finally, in June, we want back up for another visit. This was our Orientation session and included meetings with all sorts of people. I’ll devote another entry to describing this visit in greater detail.
Coming out of this visit, we were given the strong indication that Shirley’s case would be reviewed in the next week or so and she’d officially “on the list”. Alas, a week later, we learned that the team’s cardiologist had a concern about a small side artery on her heart. They wanted to do another test before placing her in the program. The test was completed—and yet again, the test results had trouble making it up to Seattle. Once they finally made it up, the issue was put to rest.
Then, the next weekly review committee meeting was cancelled due to vacations, and that takes us to the present. Each Wednesday (committee review day) brings the anxiety of wondering whether her case will be heard. Every piece of evidence suggests this step is just a formality—the head of the transplant program called Shirley’s pulmonologist and said she was an excellent candidate. We just can’t seem to get over this last hurdle.
Two more days until the next Wednesday. Maybe this is the week.
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