There is so much to unpack from these past 2 weeks both medically and personally, so buckle up as this will be a long one. Happily, we will start with the biggest announcement…we likely will be home by this time next week!!!! Of course we have not had any control on this medical journey and it may very well change, but the final pieces are being lined up. They finally found a pill that is raising Alan’s heart rate and blood pressure enough to tolerate productive dialysis as well as appearing to increase blood flow to his new kidney. He is requiring less dialysis now and producing more urine now; however, he still needs help clearing the toxins so his kidneys are not considered working yet. We are officially 2 months post-op and it seems that his kidneys are possibly progressing forward. If they continue healing and strengthening, dialysis will just be a temporary crutch. If they retard, then we will begin discussing a live donor transplant in the winter, but we are not at that point yet by any means.

So, the actual logistics: if I didn’t update it, Alan has been back in step-down for nearly 2 weeks. That means he goes to a dialysis room for IHD treatments and they need to have adequate staff for each patient there. It seemed he needed IHD 4 days a week to keep his fluid levels stable enough (for both his heart and pain from it backing up in his trunk). We have been unable to find a dialysis center at home that is able to provide a 4 day chair so he didn’t overfill during an entire weekend (either M/W/F/Sat or M/Tu/Th/Sat). That literally is the only thing keeping us in the hospital. Now, he has had several really strong urine output days so they think he may be ready for 3 day. This is our trial week!!! He’ll do M/W/F and then if next Monday his fluid is still stable, they will dialize him in the morning and then send us to transplant house for Monday night. We would pack up and clean up on Tuesday, leave my apartment of over 5 months behind, and be in our own bed next Tuesday night to start his new outpatient dialysis in Sylvania on Wednesday. He has a heart cath here in cleveland the following thursday (july 5th) so if any portion of this plan isn’t working, they could identify it relativly quickly even though it would mean readmission probablly. 

The gym: Cardiac rehab usually starts around 8 weeks post-op even though they thought we would be home by that point. This involves mild to moderate work-outs under medical supervision while monitoring all vitals. Alan began his this Monday (two days ago) and is soaring. He did his first steps in 6 months this past weekend and already was able to accomplish two full flights yesterday; in perspective, that is more than Alan has been able to do at one time, in the past TWO years. So, our schedule for the next few months for returning home looks like Cardiac Rehab in the mornings followed by dialysis in the afternoons M/W/F, plus 8 am labwork every Monday and Thursday.

It is often said that transplant medicine is a treatment and not a cure… although we have felt the weight of that statement very often the past 2 months, we finally are at a point where, even though Alan is not “fixed”, the days are better now, even with the medications and limitations and routines, than almost any we have seen in over two years. We have so much hope and it finally is starting to feel like all of the difficult was worth it. Transplant journeys are so much more than I ever could have understood even though I participated partially in two already before this. This was absolutely the most horrific journey but we found light in our donor’s tragedy and are making something beautiful out of his death and gift. We still have Reese here and although raising a toddler in isolation and a hospital is a strain, we have never been so happy. She is an incredible kid and tells us often that she is happy because we have the three of us. However, she also tells us how much she misses her big house, and room, and toys, and animals, and grandparents, but she is a hospital champ and in love with being with her parents. Alan is physically and mentally a brand new person. I am exhausted still at all times and feel powered on far too many hours a day but I wouldn’t trade it for anything. It feels a bit ironic how terrified I was to lose my job yet it ended up being the most liberating destressing outcome. I have always been so focused that being the sole provider for my family primarily meant financially, but our hearts needed so much healing that it’s a different kind of provision. I am providing for my family by raising Reese, cheerleading/scheduling/advocating for Alan, ensuring insurance coverage through Cleveland Clinc and Governement capabilities, promoting the fundraisers, slowly packing the apartment, and just keeping the three of us together… and it is enough. 

Special events: Alan’s birthday was last week, the 14th. We celebrated #39 with surprise balloons, dominos pizza, and nothing bundt cakes, plus a few small gifts. The best part of the day was that Alan had been given privilages to leave the floor finally – we went up the the rooftop patio and Alan was able to take his first fresh breath of 2022. Yes, that’s the perspective, Alan had lived this entire year in the same four white walls without wind in his lungs or vitamin d on his skin. This is what I posted for Alan – “So grateful to celebrate another year with this most amazing guy. This has honestly been the most soul-shattering, limit-testing journey as I have literally watched you fight for your life almost daily for six months. But it gave me another day, another year, another lifetime holding on to my best friend.    We have been magnetized to eachother from the very first day, almost 22 years ago. Our challenges this past year have been more than most will manage in a lifetime and I would still choose you, and this, over and over. I love every day with you, come what may.    Happiest of birthdays to my funniest friend, adventure partner, sweetest dad, and toughest human. Thank you for pushing on because I want decades more to celebrate you. We’re so close. An extra breath today for our donor angel(s, past and present) and wishing for some luck with the kidney graft. I want to get you home, but Reese and I are happy anywhere with you. Tail end of your 30s and the start of a better lifetime. Even with the obstacles, we had so many smiles this past year and I have cherished getting to spend so much extra time with you.” 

Next are the COTA fundraisers. The first batch of shirts have shipped and I’m hearing feedback of how great they are. Please send me pictures in your shirts!!! Additional batches of shirts will remain available through the summer at least. We are hoping that many of our friends at the silent auction/spaghetti dinner on July 24th will be repping the logo with pride! The “Party at the Pits” outdoor fundraiser and cornhole tournament happened successfully this past Saturday (18th). Not only was it markedly profitable, but more importantly, it was an amazing party and full day of laughter, competition, and fun. Although we only witnessed it via facetime and photos, we hear it was a blast. Our family/friends, acquaintances, and complete strangers were beyond generous and we feel so loved. We are beyond lucky and grateful to our dedicated volunteer team from the Moose. They have put in so much energy to making sure these events are successful both for the participants and the COTA fundraising efforts. It is more than we could have asked for and the July event looks even bigger.

Father’s Day was strange for so many reasons. It was the first time in over a decade we weren’t spending it at the lake with the Flanigan family. Beyond that, we can’t imagine the lake without Jimmy anyway (as Alan’s oldest brother, also a transplant recipient, passed away unexpectedly this past September). Obviously father’s day isn’t brother’s day, but for the Flanigans it feels synonomous and heavy on our hearts. I celebrated Alan for all of his strength, knowing that fatherhood probablly saved his life and pushed him through this journey. I celebrated my dad, Tom, not only for his prominent volunteer efforts in our fundraising events, but also he has been responsible for maintaining our house and Maui (cat) the entire time we’ve been gone. I celebrated Alan’s dad, Jim, as he has faced his own health challenges these past few months while also navigating months of Reese, plus keeping Addison and Dexter (our doggies) while we have been away. In fact, Jim was hospitalized via the ER the night between Alan’s heart and kidney transplants and has faced 2 hospitalizations and several surgeries/procedures now; luckily, it isn’t his heart but it is still painful and challenging. I have been saying it though most of last year as well, but the Flanigan family genuinely deserves a break. Overall, all three are not only exceptional fathers but also just wonderful humans. 

We are ready for new, albeit bittersweet, Father’s Day traditions after this and cherishing old memories and fulfilled by dedicated friends and encouraged for our progress.