Roy kept referring to this experience as going to “Transplant School,” but it was less classroom and more shuffling from waiting room to waiting room for me and from one test to another for him.
We drove down to Houston on Sunday afternoon after briefing Trish and Phillip on the care and feeding of the cats. I think in the end, the cats had more fun with them than they expected – photo evidence suggests there was ample playtime and treats to be had, even if these were substitute humans serving as providers. We stayed across from NRG stadium on Main so it was a quick commute to Houston Methodist each day. Unfortunately, our location did not provide any, and I mean zero, USB sockets for charging and I forgot to pack a phone charger. So, Sunday, being Easter, we had a field trip down 288 to a QT location to buy an adapter. Roy discovered that the QT makes a tasty vegetarian sub.
We rose early on Monday to be in our designated location by 7 am. The 26th penthouse floor of the Outpatient Center (OPC) is dedicated to the Walter Transplant Center and the lobby was full of patients – some there for lungs, others for kidneys, etc.. We had been warned in advance to not follow what the MyChart would say but to use the provided agenda; it’s not normal to be told to ignore MyChart. After using a Kiosk to check-in and then meeting a staff member at another Check-In Desk, Roy had been outfitted with the requisite patient identification bracelet. Roy chose not to eat beforehand – he doesn’t like to eat before there are labs in case they are supposed to be fasting labs.
We waited about an hour to be called into one of the few actual “classes” he had – Liver Transplantation Orientation. The conference room held between 15 and 20 people including us so we estimate there were 8 patients and associated caregivers there. The session included a 24-page packet of information, a PowerPoint presentation, and the signing of acknowledgment and consent forms. One of the Transplant Coordinators named Vala led the session. We will not know who has been assigned to Roy’s case specifically until after the Medical Review Board (MRB) meets about his evaluation. Coordinator Vala told us to write down any questions specific to the patient’s case because the assigned coordinator will be the one most able to answer those. It didn’t stop eager patients from asking questions throughout the presentation however.
The MRB meets on Thursdays and we were told that the cases of the patients attending in our group would likely not be discussed until next Thursday or the following Thursday – so earliest would be April 16 and most likely not until April 23. After the MRB meets, the Transplant Coordinator calls to give the verdict – the patient might be approved to be listed, might have to have additional tests, might be deferred (to be listed but later), or might be declined. One fellow traveler looked like he might need to be prioritized; the rest looked relatively healthy and we did not actually see them as a group again. At the end of the hour, the group was split and sent to different destinations.
One of the interesting changes in liver transplantation since we last did this is an increased use of Living Donor sources. Livers are needed by more people than the current supply of deceased donors provides. Now, they can take 1/10 of a living donor’s liver and transplant that for someone who needs a replacement. That healthy portion of a liver will, over time, become a fully functioning liver for the patient, and the donor will regrow tissue to replace the tenth removed. There are limits on age -someone needs to be at least 21 and really not much over 57 – and in good health to donate a portion of their liver. Living donors cannot apply to donate until someone is listed, but the benefits of having a living donor include removing some uncertainty about receiving a donation as well as getting the full medical work-up if someone chooses to donate. Another plus is being able to schedule the transplant when it is most convenient for both donor and recipient. We have to think about this option – it is not as invasive and potentially harmful to the donor as it used to be (most recover quite quickly – maybe 2-3 weeks off work – and insurance usually covers the costs), but we aren’t sure we know people that would want to do such a thing. Being a donor is still a big surgery and all surgeries are potentially dangerous.
After the liver meeting, we got sent to room 17 which overlooked the tree-filled Rice University campus. We had a consistent soundtrack of someone, somewhere jack-hammering. During down time, we attempted to find the source and eventually identified it as being a bobcat jack-hammer taking out one of the lanes on Fannin Drive at the other end of the OPC building. In Room 17, we met with a dietician (Rachel) who will be on Roy’s team from here on out. Roy apparently needs more consistent meal times including a snack, more protein, and less protein-fortified processed food, as well as to either start PT again or a walking program to build his strength as he is “pre-frail.” The stronger a patient is going into a transplant the shorter the time will be in ICU and the hospital afterward for recovery.
After Rachel, we had a visit from the Nurse Practitioner Kimberly representing the transplant surgeons. Kimberly asked Roy about his medical history, habits, etc. She did some more checks on his vitals (he also had these from another nurse) and asked him a lot of questions. We then had a visit from a quiet young woman who called Roy “Hon” while giving him an EKG. And then we waited. The next person on his dance card was the cardiologist, but somehow, they were not appearing. We were asked to go wait in the hallway so someone else could be put in the room until the cardiologist had been located. At that point, Roy still had not had his labs, but they would not let him go to labs until after.
We were eventually brought into Room 14 – it is an interior room with no view – and a cardiologist, Dr. Sen, came to talk to Roy. She asked a lot of questions as part of her assessment about the family history, etc. She warned him that depending no what they see, they may require additional testing in the Cath lab. When Dr. Sen was done, we went back out and down toward the lobby to wait for the labs. Roy was getting very hungry and we were running out of time before his next stop on his agenda. The lab tech was very good – she kept him talking while she took between 12-15 vials of blood at about 12:30 pm and we made a dash down from OPC 26 to go to our next stop, Fannin 9. On the way, we stopped at the Starbuck’s to get a baked good and an iced tea as we had no time for anything else.
Roy’s agenda said Fannin 9. It’s important to know that the Houston Methodist campus has at least 9 buildings plus parking garages. Going to Fannin, meant going down to the 2nd floor of OPC and trekking into the adjoining tower to get the crosswalk across Fannin street into the Walter tower and taking a right to an elevator bank for the Fannin/Dunn towers. On the upside, we now know where the SLICU is that Roy will be for 4-6 days in if he has a transplant, ; on the downside, for someone who gets winded easily, this was a long walk. We admired the artwork along the way. And when we arrived at our destination as scheduled, we learned that he was actually supposed to be seen in the OPC. The medical assistants were quite happy though to be shown the printed out agenda and made a copy because we are not the first transplant evaluation folks to be sent their way incorrectly. Don’t know who, but somebody hasn’t updated the document that is being sent out and it has definitely been annoying to their colleagues. We were lucky, however, that the Fannin 9 team could do the Carotid Doppler for him.
We waited for transportation to come so Roy could have a wheelchair back to OPC, but the ticket was not picked up – it was a VERY busy Monday for the hospital with lower levels of staff on duty as a holiday weekend. We gave up and started our hike back to OPC. We encountered, by chance, an Easter-holiday-decor-bedecked golf cart looking for customers at the base of Walter Tower. The driver was eager to get Roy loaded, brandishing a step stool out of nowhere, and we took a very zippy drive back to OPC with Easter Egg lights swinging, her bicycle bell ringing as we approached each corner, and very kind people (or very astute ones) hugging the walls of the crosswalk and hallways to let the cart pass. The driver was musing over a change of decoration for post-Easter when she left us near the elevator deck in OPC and started looking for her next passengers.
Roy’s next appointment was for an Echocardiogram on OPC Floor 16. While he had that, I took a side trip up to 26 to have our parking validated. The Liver Transplant Evaluation provides validation for two days which saved us $15. The check-in desk clerk was supposed to leave at 3 pm, but said there was no way she’d get to go until at least 4 pm. She started the day at 6 am but the hospital was short-staffed due to it being Easter Monday. She still managed to be cheerful and kind. The whole day had that New Student Conference feel to it – here’s a schedule, go find these places to do these things, and bother people when it doesn’t go as expected.
After his Echocardiogram, Roy was done for the day and definitely tired and hungry. We found the car, exited the garage, and went down Main Street toward our hotel looking for food that appealed to him. Roy chose Olive Garden and they must be used to this post-shift medical center schedule because it was fully staffed and quite busy. We took our leftovers back to the hotel to eat for supper. Roy crashed for several hours, I partook of the television, read through the entire packet from the liver transplant class, and we went to bed early to prepare for day two.
Interesting tidbits that we learned: Methodist gets donor organs from within an 1800 mile radius of the hospital. In 70% of their cases, they use a liver perfusion pump to keep the organs healthier pre-transplant so that patients have better outcomes. If Roy is listed for transplant, he and I will both take classes twice/month to learn more about maintaining the donated liver. If listed, Roy will be supervised every three months to maintain his status. Most of the people who receive a liver in Houston have a MELD of 32 and 20% of those listed receive a liver within a year.
Waiting 
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