Our journey to transplant. My wife Charlotte’s (Charlie) journey to double lung transplant started back in March of 2018 after seeing her Specialist in Atlanta. Her health had declined because her disease, Pulmonary Hypertension, was advancing. Her doc said we needed to increase her meds and if that didn’t work, transplant was the only option. Shocked, we let that news settle in and started coming up with a plan. Her Specialist said if she was going to choose transplant, she needed to get to Duke. He successfully got us into the transplant evaluation program and we came to Duke the week of July 9th.
Lung Transplant Evaluation Week at Duke University
We were at the hospital every morning from about 8am until about 4pm going from clinic to clinic getting tons of testing done. CT scans, echocardiogram, chest x-ray, blood work, heart cath, pulmonary function tests, and the list goes on. We were both exhausted at the end of each day. We headed home Friday evening and waited for their decision. On Tuesday evening, Charlotte received a call from her coordinator who told her that Duke was not going to take her case unless she could meet all of the required physical goals, gain some weight, and maintain the weight she gained. During our week at Duke, we went ahead and looked at apartments in case we were asked to relocate. Even though we were told no after evaluation, but also knew if conditions were met that she’d be accepted, we put a deposit down on an apartment. We could move in on 8/18.
Getting New Care at Duke University
She had her first appointment with her new doctor at Duke scheduled for 8/13. We drove up on 8/12 with intentions of seeing her doc, then head back to Sylvania, pack up the U-haul and drive back up to Durham on 8/18 to move into our new place. During her appointment with her new doc on 8/13, he expressed how concerned he was with the advancement of her disease and her current condition. He admitted her to the hospital that day. Over the next week, they optimized her meds and prepared her for rehab once discharged. With us not being able to get back to Sylvania, I was going to rent furniture until we had a chance to get our own. However, our framily in Sylvania had different plans. They asked that I send them a list of everything we wanted to move up to Durham. They packed our things, loaded the truck and drove up here to move us into our new place. Charlotte was discharged on 8/19 and felt weird walking into our new place because her things were here, but she had never seen the inside of the apartment.
Starting Pulmonary Rehab
She started rehab the following week and she was beyond exhausted each day. The first two weeks were the hardest for her, but she kept pushing herself. The rehab team here knows exactly what they’re doing. They formulate plans for each individual who walks through their doors. We were also required to take educational classes about transplant prior to her daily workouts. Lots and lots and lots of information. New meds, new diet restrictions, new lifestyle.
Getting Listed For Organs
Charlotte has worked incredibly hard to make it to this point. With the support of too many people to count, she achieved all required physical goals that seemed near impossible upon arrival. The entire transplant team saw how hard she was working at pulmonary rehab and reciprocated. She was listed for heart and lungs on 10/12/18. She graduated pulmonary rehab on 10/26. Together as a team, her doctors, nurses, therapists, staff members, support groups, family, framily, and friends have all been extremely supportive in making sure she made it to transplant. Thanks to everyone who has supported us through this journey. Without your support, I’m not sure we would’ve made it. I have to give a special shout out to my employer. Without their support and understanding, I’m not sure what we would’ve done. I love that my job goes where I go as long as I have an internet connection. They’ve gone above and beyond and they even send pretty cool care packages. : )
No Offers For Organs
After being on the list for organs for 60 days with zero offers, her transplant team took action. Charlotte was admitted to the hospital on 12/11/18. She was put on IV meds to help her heart squeeze a little better to get her blood pressure at a more normal level. She was stable and remained in-patient in the cardiac ICU while on these medications. Over the two week period in the cardiac ICU, her resting heart rate slowly climbed. Her transplant team discussed options and decided the best route was ECMO. She was placed on ECMO on 12/29/18. Prior to being on ECMO, her organ status for heart was lower priority. Her status after ECMO was elevated to the highest status available. Her LAS (Lung Allocation Score) is somewhere around 65 with 100 being the worst.
Elevated Urgency With ECMO
Now we wait for the call that a donor is available. On 12/27, prior to ECMO, she was called with a potential donor only to find out the lungs were no good. Both heart and lungs will come from the same donor. With her status level elevated the call could literally come at any moment. We’ve got to be ready at all times. Once she receives the call, the staff goes into action. Blood tests, prepping her for surgery, consent forms, nose swabs for RSV, etc. Lots of stuff starts happening. Once they’re ready for her, she’s wheeled to the OR and I’m sent packing to the lobby to wait. The surgery will take between 8 and 12 hours. The entire team here is nothing short of AMAZING!! She’ll be in very good hands in the OR as she has been the entire time we’ve been here. Did I mention the waiting?
Update: 1/3/19, we got the call and It’s A Go!!