Day 1 was a long one. A lot more of waiting than anything. Here was our schedule:
What’s not shown on the schedule was the transplant orientation, which started at 8am and lasted about an hour. We barely got any sleep the night before, and had to wake up at 6:45am, since the drive to the hospital was about 30 minutes long.
The orientation was pretty harmless. We did the exact same thing a year and a half ago when we came down to Duke for the very same reason, so we knew what to expect.
So, the three phases of lung transplantation at Duke are the following:
- Evaluation (5 days, lots of tests)
- Relocation (Move to Durham; expect to stay about 6 months)
- Pre-tx pulmonary rehab (23 days), wait list, retransplantation, Post-tx pulmonary rehab
With the evaluation phase, they test everything under the sun to make sure that the transplant patient will be able to survive the transplant. Yesterday, the transplant clinic drew 29 vials of blood from Anya and performed a barium swallow test to measure her acid reflux problem. Today, she’s in the middle of a liver biopsy, since CF patients generally have liver problems due to the amount of drugs that they take.
The evaluation phase is pretty mentally and physically draining, since a ton of tests are done, there’s a lot of waiting around, and so much of whether a patient moves on to the next phase rests with these tests. Just be prepared.
The relocation phase is basically moving to Durham or within 20 minutes of Durham for about 6 months. The primary caregiver must be able to commit to being with the transplant patient for the duration of the transplant, and cannot be a paid person. A secondary caregiver is also necessary, in case the primary cannot be there for one reason or another. Those are about the only requirements.
Once the transplant patient and the primary caregiver has been relocated to Durham, the next phase is the 23 days of pulmonary rehab. The last time we came here, they were pretty strict on having all patients pass the rehab process, but it looks like they’ve relaxed those requirements since then. On the orientation document, it now says something to the effect of, the amount of days in rehab will vary on a patient to patient basis. One of the doctors told us that the patient must pass the following tests:
- Walk 1,000 ft in 6 minutes.
- Walk 1/2 miles in 20 minutes.
If the patient can pass these tests, then their pulmonary rehab stay may be shortened. From talking to some of the other caregivers, the patient can use as much oxygen as necessary to pass the above requirements.
In addition, one caregiver that I talked to told me that Duke’s intensive rehab process literally saved her husband’s life. At least, enough to give him the hope of getting transplanted. The patient went from not even being able to get out of the car because his lungs were so damaged due to Pulmonary Fibrosis, to passing the above tests, and not even needing a wheelchair for his week long transplant evaluation.
The doctors at our main transplant center have been urging Anya to go to pulmonary rehabs for months now, but we’ve kind of neglected it, mainly because Anya was still doing every day activities with relative ease. Much has changed over the past two months, and after hearing this guy’s story, we’re definitely going to start the rehab process as soon as we get back to Virginia.
That’s about all we learned today. Now, we just have to finish all of the evaluations and tests this week, then the doctors will meet next Tuesday to determine which of the following patients are eligible to move onto the relocation phase. Hopefully, we are one of them.
We could be moving down to Durham in two weeks. I’m actually hoping that we get moving soon because Anya’s breathing seems to be getting progressively worse. She can barely walk from the bathroom to the bed without getting winded now. I am hoping that it’s just the cold weather down here, or perhaps allergy related.