Yesterday, we made another trek to Seattle for a follow up visit to the Transplant Clinic. These visits will continue for the rest of Shirley's life, but the interval between them will continue to increase as she gains strength and stabilizes her medications.
The core of each visit will be the same: a Pulmonary Function Test (PFT)--to check and see how her lung capacity is trending; a Blood Draw--primarily to check her Tracrolimus levels (one of the anti-rejection drugs); and for a visit with her Post Transplant physician, Dr. Lease.
Monday's visit also included a trip to the Interventional Radiology Department to have the port removed that had been left in place to facilitate blood draws and any IV medicines that may need to be delivered. Down from as many as eleven tubes connected at a peak, this last one finally allows Shirley to take a shower without having to tape a plastic cover of the port.
Shirley's PFT score was much improved from her most recent prior test and about equal to score at the time of her discharge when she had been doing multiple hours of therapy every day. We knew that the prior score was down due to back pain issues. While her back continues to be problematic, it isn't slowing her down much now and the PFT scores prove this out.
Dr. Lease reviewed her medication list and suggested stopping several drugs. Probably the most welcome of these was the Potassium supplement that has been very hard on her stomach.
On the way home, Shirley drove the last few miles--her first time behind the wheel in over seven months. This morning, she drove Joy to and from school. Another milestone and another level of independence that is being regained.
Tuesday, September 24, 2013
Tuesday, September 3, 2013
Brownie Points
Today was our first return trip to Seattle for follow-up appointments since our return to Oregon. We drove up Monday night and somehow managed to miss all the end-of-holiday traffic and make it up in under three hours. We had a nice visit with Pete, Caroline and Frances. And while we really like being home, we miss our "roomies" and the wonderful hospitality they extended to us for six months.
The first appointment was at 7:45 for a bone density test. We won't hear the results on that for a few days, but Shirley has been given a new prescription that is supposed to help strengthen her bones. From there, it was a chest x-ray; blood draw to check her Tacrolimus and Coumadin levels; a pulmonary function test (PFT); and then a meeting with her post-transplant physician Dr. Lease.
Some adjustments were made to her medication levels and the results of her PFT tests showed a lack of progress on expanding her lung capacity. Given the back pain Shirley has been dealing with, this lack of progress was not unexpected.
Before heading up, we baked four batches of brownies and after today's appointments were completed, we visited several of the floors that had cared for Shirley in her most recent hospital stay. The first batch was dropped off with the post-transplant team where we had our appointments today.
Batch #2 was taken to the 8th Floor Rehab unit. The first person we saw was Martha, one of her main day-shift nurses. We visited with her and said hello to several others for about 15 minutes. All were delighted to see her and were very impressed by how good Shirley looked.
Batch #3 went to 5-East the ICU where Shirley spent 40 days. Unlike the Rehab floor, where they got to see Shirley at her release, the ICU team saw Shirley at her worst--coming in when we she went into respiratory distress and leaving when she was transferred by ambulance to Regional Hospital (with a trachea tube in). The crew there were delighted to see her and how much she had improved. Below is photo of Shirley with Edwin, Gayle and Greta three of the nurses that cared for her during those trying days.
Batch #4 was taken out to Regional Hospital. Again, it was great to see some of Shirley's caregivers and for them to see her on her feet and looking so healthy.
Our next visit to Seattle will be in three weeks. At that time, Shirley's central catheter (used for blood draws & IVs) will be removed and she will be tube free!
The first appointment was at 7:45 for a bone density test. We won't hear the results on that for a few days, but Shirley has been given a new prescription that is supposed to help strengthen her bones. From there, it was a chest x-ray; blood draw to check her Tacrolimus and Coumadin levels; a pulmonary function test (PFT); and then a meeting with her post-transplant physician Dr. Lease.
Some adjustments were made to her medication levels and the results of her PFT tests showed a lack of progress on expanding her lung capacity. Given the back pain Shirley has been dealing with, this lack of progress was not unexpected.
Before heading up, we baked four batches of brownies and after today's appointments were completed, we visited several of the floors that had cared for Shirley in her most recent hospital stay. The first batch was dropped off with the post-transplant team where we had our appointments today.
Batch #2 was taken to the 8th Floor Rehab unit. The first person we saw was Martha, one of her main day-shift nurses. We visited with her and said hello to several others for about 15 minutes. All were delighted to see her and were very impressed by how good Shirley looked.
Batch #3 went to 5-East the ICU where Shirley spent 40 days. Unlike the Rehab floor, where they got to see Shirley at her release, the ICU team saw Shirley at her worst--coming in when we she went into respiratory distress and leaving when she was transferred by ambulance to Regional Hospital (with a trachea tube in). The crew there were delighted to see her and how much she had improved. Below is photo of Shirley with Edwin, Gayle and Greta three of the nurses that cared for her during those trying days.
Batch #4 was taken out to Regional Hospital. Again, it was great to see some of Shirley's caregivers and for them to see her on her feet and looking so healthy.
Our next visit to Seattle will be in three weeks. At that time, Shirley's central catheter (used for blood draws & IVs) will be removed and she will be tube free!
Sunday, September 1, 2013
Part 2
We've moved from the stage of each day being something new, different, frightening or exciting; to each day being small incremental steps towards full recovery. The pace is much slower and to keep from boring our readers to death, the pace of posting blogs with shift back. It has been very interesting over the last few days to hear how many friends, neighbors and family were checking in daily for updates. I've been chastised slightly for not posting for awhile, so here we go.
I might suggest that since the pace will be slowing down, you may elect to become a follower of the page, which I believe then sends you notifications when there is a new post. Please correct me if I'm wrong on that point.
I might suggest that since the pace will be slowing down, you may elect to become a follower of the page, which I believe then sends you notifications when there is a new post. Please correct me if I'm wrong on that point.
It's been eleven days since the last post. In that time, Shirley has been challenged by the continuing burden of back pain. This has hampered how much exercise she has been able to do. Despite the pain, she has regularly left the house and gone to various appointments and shopping. The last couple of days. the walker has stayed in the car and she has ventured out with a supporting arm or a shopping cart to help with her balance. She's also weaning herself off the supplemental oxygen the has been taking.
This coming Friday, she finally has her first post-release physical therapy appointment. The delay was due to a communication mix-up that has now been resolved.
This Tuesday, we go back to Seattle for follow-up visits. In addition to meeting with the transplant team, she will have a bone density evaluation to determine if she has developed osteoporosis. This could explain the back problems if indeed her bone density has diminished.
I'll provide another update later this week when we return from Seattle and have some test results.
This coming Friday, she finally has her first post-release physical therapy appointment. The delay was due to a communication mix-up that has now been resolved.
This Tuesday, we go back to Seattle for follow-up visits. In addition to meeting with the transplant team, she will have a bone density evaluation to determine if she has developed osteoporosis. This could explain the back problems if indeed her bone density has diminished.
I'll provide another update later this week when we return from Seattle and have some test results.
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