We started the second day of Transplant Evaluation at 7:30 am in the Outpatient Center again, this time on Floor 17. Roy had to report for an injection at nuclear medicine in preparation for a Bone Scan later in the day. He wasn’t hungry this time – we had breakfast in the hotel before we checked out. However, he was fatigued – the blood draw the day before and the long day with the hike to Fannin on a near empty stomach wore him out. When he came back to the lobby, he had two attendants, one to accompany him and one to push the wheelchair. The injection can make people woozy so he also now had a yellow fall risk band. I have to thank the good people at BCS Fitness for preparing me – they make me work hard and push the “tank” fairly often – as I pushed that wheelchair and its passenger for the rest of the day.
We went up to 26 to do the kiosk and check-in for another patient bracelet. There were fewer people in the lobby on Tuesday. His next appointment was not until 9 am with a social worker. We met Larissa in a consultation room and spent an hour with her going over things like the location requirement for being listed (being within 100 miles of the hospital), Roy’s medical history, his social history (drugs? alcohol? Rx abuse? smoking? tattoos? piercings? all no), family history, our marriage, etc. This was all related to sussing out his coping mechanisms, potential issues, and so forth. Larissa reviewed the level of support Roy would need, the importance of compliance in being and staying listed, and the basic timelines of being on the list and of being transplanted. And she gave us homework.
Before the Medical Review Board discusses Roy’s case, Larissa needs us to submit a 24 Hour Care Plan and Roy has to sign a Compliance Agreement. The 24 Hour Care Plan explains that the patient must have someone with them 24/7 for a minimum of 30 days – but often 60 days or more – after leaving the hospital to watch for confusion (encephalopathy), mood swings, and lethargy or anything else that is just “not right” and they ask for 3 or more caregivers to share this load to prevent burnout and exhaustion. The caregivers will ensure safety, provide meals, help with medications, keep the surroundings clean, and transport the patient to appointments. They clearly state that caregivers will be stressed and carrying responsibilities, be absent from work and isolated from normal social activities, but the Methodist Transplant team will provide education and support to caregivers to prepare and go through the transplant process. The 24 Hour Care Plan is required before Roy can be listed and Larissa is tasked with verifying with each person on the form that they are aware of their inclusion.
There will be a Primary Care Team that has the 24/7 responsibilities mentioned above. This includes a Point Person and up to 3 other people who will be available to be with Roy, handle meds, etc.. The Primary Care Team is also expected to attend Transplant Education Classes (online, webinar or classroom) with the patient after listing and/or be among the two people who participate in the pre-discharge in-patient training sessions with the pharmacist, transplant coordinator, and a diabetes educator if needed. Methodist is going to make sure that when Roy leaves the hospital he has the educated support that he will need to keep that new liver as healthy and the transplant as successful as possible.
There is what I am going to call a Secondary Care Team that provides help on an as needed basis. The Secondary Team helps with housekeeping, laundry, errands, picking up needed medications or supplies, preparing meals, and sometimes communicating with transplant staff. There is also a designated Transportation Team to bring Roy to all classes, clinic visits and appointments and to be available as needed for medically necessary transportation. The Secondary Team and Transportation Team are probably what most of us think of when we offer to help somebody out with a surgery or illness.
We don’t expect Roy to be actively listed until the HCC is vanquished and he has kept it at bay for at least 3 months – so 6 months from now at the earliest. Asking people to sign up now to be on the caregiving teams will be a challenge – it’s hard to ask for help. And do people really know what they will be doing or if they are available in 6 months? And things in their lives may change, too. Our homework is due by next Tuesday. Larissa will be our social worker going forward.
Roy’s Compliance Agreement, in several pages, basically asks him to attend all appointments, have all labs, communicate regularly, take all the medications, follow the specific diet, and abstain from specific things for the rest of his life if he receives a transplant. He will be subject to random drug screening. Larissa also had Roy complete a depression index, requested that we send the medical Power Of Attorney and Living Will if they are not already on file (they are), and provided information about support groups and education. She warned us that all labs will be done at Methodist facilities, all clinics will be on the 26th floor, and transplant patients have to come to appointments at least once/week for a few months but that it tapers down to being once every six months eventually.
The next appointment that we had was with the Financial Counselor. This was very short because we essentially have very good insurance. Andres was filling in for Mavis who will be our assigned counselor; he provided us with a sample list of the many, many medications that Roy will take for the rest of his life if he receives a transplant (estimated to be about 20 different Rx for most transplants). Most were new to us, but a few were recognizable as they are already part of his routine. The key takeaway is that if anything changes on our insurance we need to notify Mavis as soon as possible.
After meeting with Andres, Roy had to go back to 17 to have the Bone Scan at 10:45 am (we validated the parking before leaving 26 this time). Radiology took the time to go ahead and do his Panorex x-ray too. The x-ray was to check his teeth. Remember, I told you that liver disease attacks the teeth. Part of the packet from Day 1 states that if someone cannot solve their dental issues, they might be required to have all their teeth pulled to be listed for transplant. Essentially, infections are to be avoided and dental issues make a person vulnerable to infections.
They were so quick at Radiology that Roy had another hour and a half before his next gig. We went down to 2 and over to the Deli. I parked his wheelchair at a table and got him a veggie wrap and I had a falafel pita. On the way back, we stopped at the Starbucks so I could get an iced tea and ran into Dr. McFadden. He accompanied us back to 22 (our next stop for a Pulmonary Function Study). He did jokingly offer to let me just drop Roy off and pick him up when the transplant is done.
We saw a sign stating that Pulmonary needed to check in on 2 so we wrangled the wheelchair back down to 2, went to check-in to find Roy was already checked-in, so rode back up to 22 to wait. Pulmonary and the Liver Center share 22. Roy’s appointment time came and went and no one appeared. I bothered the Liver desk to ask them to figure out what was happening – they pinged Pulmonary for us and 30 minutes later, they called for Mitchell. Roy had a lively session and came back out telling stories and laughing as usual. He now had a bandage on one arm from nuclear’s injection and another on the other from arterial blood being drawn in pulmonary.
The last stop of the day was down on 16 – an MRI Abdomen screening at 3 pm. We got there a little bit late, but close to 3 pm. This time, I went back with Roy to help him change into the gown. They swapped him to an MRI-safe wheelchair and sent me back out to wait. It took a lot longer than expected because Roy’s IV blew while he was in the MRI machine. They had to extract him and redo that IV; the contrast being used has to go in quickly and all at once. While he was in there, I got to watch another person in the lobby; she did a language lesson on duo-lingo (Italian or similar) for the whole lobby to hear when she got the celebratory bells, changed to doing Tai Chi and/or Yoga, stopped and read a book for 20 minutes, did some stretching, charged her phone, read in another book or journaled, and did some child pose from her chair using the coffee table for her arms/head. I really wanted to see who she was waiting for but she managed to leave while I was distracted by a phone call. I reminded myself that she was trying to be constructive in her use of waiting time and taking care of herself, but she really did have the attention of many of us and appeared completely oblivious to that.
When Roy was finally done, I got called back to help him dress and push the wheelchair out of the MRI suite. The nursing team gave him a bit of a bandage to go over where the IV blew on his arm. We managed to get downstairs, parked the wheelchair and arrived at our car in the parking garage a little after 5 pm. We had lots of company driving from the med center out to 290 and home on 6. We refilled the car, picked up our mail, and happily greeted the cats a bit after 8 pm.
Today, test results have started to populate Roy’s MyChart. His current MELD is 15. Most of the tests that were done, we have no idea what the experts are hoping to see. He apparently has no plaque in his carotid artery. His EKG results look pretty normal. We really are not entirely sure what the Medical Review Board will decide using this information, but we do know we have homework to do, and they aren’t going to tell us much for at least a week, maybe two.
Waiting 
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