I am truly sorry for abandoning these posts. I kept waiting for some monumental milestone to announce definitive news to you all that it was finally time to celebrate (like proof his kidney graft will work without need for another transplant or that Alan had the energy/tempermant of three years ago), and in doing so, I have accidentally bypassed many small victories with all of you. And we have had plenty. I just kept thinking that incredible news was around the corner, so even though we have still been on a roller coaster with highs and lows, you have not been privy to any of it. First and foremost, Alan has been off of dialysis since the beginning of August! His labs were looking like the kidney is working but I kept waiting for a definitive confirmation from the renal team before announcing it. Then we hit some turmoil. Labs went haywire, Alan lost energy and feeling well, and creatinine sadly spiked again. At first, it probably was over dehydration since he had one set of meds for any day without dialysis but taking them seven days a week turned out to be far too much. We also ended up in the emergency room several times as Alan‘s potassium and magnesium were dropping critically low. We would have a few good days at a time which included my birthday and Reese‘s birthday. By mid September for our wedding anniversary, we were hoping to get away for a long weekend, but each day closer Alan was feeling worse. At his heart biopsy on September 15, the team identified the first stage of rejection, which ordinarily would not require intervention just a close eye if any symptoms declined. However, labs continued to get worse and Alan was losing daily function again. At that point he had a kidney biopsy and that showed acute rejection with damage to the kidney. This time period of rejection occurred at the first prominent drop in Alan‘s steroid regimen since transplant. At the same time as this steroid drop and rejection, Alan also developed his first gout attack in two years. The typical preventative and treatment meds for gout would negatively affect his kidney so they are not options. The steroids they used to attempt to counter the rejection actually were a miracle. Not only for his gout, but his energy, his demeanor, and his capabilities. Usually, the reputation of prednisone includes a nasty ravenous appetite, bitter irritability, and discomfort from bloating and weight gain; however, it truly was what Alan‘s body needed, so apart from the puffiness, and an excuse for extra meals, those few weeks were quite lovely including getting out and seeing friends and family, re-joining his cornhole league, getting things accomplished around the house, and excursions with Reese. We fortunately received word this past Friday that his heart biopsy showed no rejection and his labs are as close to stable kidney function as we have seen post transplant, not perfect, but close. The downside is as soon as the rejection prednisone ended, Alan ended up in the emergency room this weekend with the worst gout attack he has ever had. We are back on steroids. If they don’t work, he will need 3 day inpatient therapy, but either way, his rheumatology team has a game plan from here on out. His kidneys are stable enough to resume a low dose preventative med after this regresses also. For now he is comfy on the couch and attempting crutches, which for being one of the most athletically coordinated men I know, is still a pretty hysterical sight.

We have always known that transplant medicine is a treatment, and not a cure. This is not a pessimistic statement, just going for transparency. Not only is the immunocompromised life socially impactful, but with fragile organs, the limitations on other medications can feel relentless and disheartening. For a cold/flu there are literally only 2 medications Alan can really use. He has not used any medication with ibuprofen or a decongestant in over twenty years. For migraines, we are lucky that we finally found a combination that generally works, as out of the 60 medications that exist, as a heart transplant patient he is allowed 6 of them. So now gout… it shouldn’t be debilitating but as a kidney transplant patient the routine he’s used for the last 15 years was no longer allowed. His team is brainstorming and it looks like we have a game plan, but that still doesn’t help when he is crumbling with debilitating pain, unable to walk. But then we are reminded that a day with pain and challenges is still one more day than we were guaranteed. I write this not for pity, just perspective. Transplant is a lifestyle. After this many years, most of you reading this probably already understood that from how quickly our daily plans change, or when we have broken plans, or simply unable to commit, but for me, it fills me with gratitude and awe; Alan has been living with limitations for so long but he still found strength and purpose to power on knowing it would be worth it in the end. So much of Alan’s life has been outside of his control, defined by all the things that can’t be options for him. As much as this weighs on him, he still made it here. In fact, this year we have learned about multiple patients that chose to decline transplant (or re-transplant as it may be), the same way that a cancer patient may refuse chemo to preserve the quality of their remaining life. We’ve been living this for over 2 decades but the refreshed commitment to abiding by the rules, plus the newfound limitations with fragile kidneys, has been motivated by those that didn’t or couldn’t make it. Simple things and insight that emphasize it’s better to have a life with restrictions than not have one at all. That segways into two thoughts…

1)  I know I use my rollercoaster and carousel metaphors often, highs/lows/cycles. When we’re in a low, I frequently find myself describing current life as 10 steps forward and 8 steps back. It builds in my brain so negatively, overwhelming my thoughts that our baby steps are still so tiny and progress is so minimal or just breaking even. However, this week, I really realized how skewed and quite wrong I am. Two years ago, or even 7 months ago, we were lucky to have 2 or 3 good days a month. Currently, over half the days are good!! Within the past few weeks we had 8 good days in a row. It’s not 20% good like my brain convinces myself in our weaker moments. Our progress has been exponential and that alone deserves to be celebrated, even if there isn’t a specific moment that tipped the scales.

2)  Sidebar: This past Friday evening we were privilaged enough to be guests at the Second Dance at Life Gala, a formal party fundraising for Transplant House of Cleveland. Each year, THoC chooses one family/patient to spotlight for this event and earlier this year they chose us! Late summer we recorded an interview and video snippets on campus. A very generous board member bought all 3 of us tickets to the event. We were not envisioning Reese being a part of that evening but after the generous gift, we, as well as the entire elite room, were thankful she was there. As I spent 161 nights in my apartment, the support system for caregivers that THoC provided was irreplacible. Not to mention, the affordable price and private space as compared to a hotel, which proved even more important as I lost my job and haven’t had any formal income this entire year. In fact, I requested a studio apartment due to the price; as one wasn’t available at the time, I was given a one bedroom for the same price, granted by a stipend from the fundraiser fund. At move-in, I never would have imagined my 6 month stay, totalling a gifted difference of $1600. This fundraiser and their goals to provide affordable, comfortably furnished housing and community during each family’s trying times is so close to my heart. Obviously the end-product video was impactful since our story is both miraculous and trying, but our gratitude for THoC seeps through because I truly could not envision having to do this without them. I will be a dedicated advocate for them eternally. We do not take full credit for pulling at the heartstrings or wallets of the guests purely in donations, as there were plenty of incredible auction/raffle items, but we are very humbled that the event itself brought in over $250,000 and the weekend totalling more than $450,000.

Focus: The real point though has to do with the days surrounding this event. Alan had appointments at the Clinic Thursday and Friday. We never really get to enjoy Cleveland as a city and honestly, Alan has PTSD just driving through it. We decided to stay in a hotel (where the Gala was) both nights and try to find some fun events/food to have a mini vacation and change our mental stigma. This was Reese’s first time in a hotel. We knew the hotel would be distracting and disruptive to her sleep schedule but then add on the pre-dawn wake up to get to cleveland, candy binging, room service, and being a late night party monster/dance machine. These few days without her stable schedule just compounded the strength of this toddler tornado and created our most difficult days of parenting yet. By Saturday night, bedtime was a feisty, exhausted, emotional battle and all three of us were at wits end. I sat in the rocker extra that night, calming her while manifesting my frustration into silent tears, beyond overwhelmed. Two year old Reese was sweet, innocent, and so grateful for every moment with mom and dad. Three year old Reese though, is proud of her independence, determined but stubborn and opinionated, and although she is still immensely sweet and loving, is too smart for her own good and her comprehension and retention is baffling. But that’s when it hit me… she knows – she knows what happened to dad, what is currently happening, what dad’s limitations are, how happy her family makes her, and who her dad is. She loved him 6 months ago but she knows him now. Her memories are solidifying. I know this happens for all parents and all kids. It’s not special because of that. These are days we were not promised. These memories are being created on borrowed time. Tragic accidents will sadly continue to happen in this world far too often. Organ donation had never been hoping that someone dies, it is acknowledging that there is a way to forward hope and light out of a tragedy that already happened. The six months of growth we have experienced post-transplant is another homage to our donor angel. These days are priceless. None of the bad days are actually bad because we have been given the opportunity to experience this together. 

I have been trying to piece this post together for a few weeks actually and as new developments alter my thoughts, it transitioned to the most recent emotions and anecdotes. It definitely does not feel like my most elegant writing so I’m sorry if the reading is quite disjointed actually. Two and a half months was far too much to cover. Biggest take aways are that Alan’s kidney isn’t perfect but it’s working better than his originals have in the past year and seems stable. Rejection was identified & treated and Alan felt the positive effects. Complications of transplant life still threaten quality of life but the motivation to bare and push forward continues to win out. The swift changes, complications, and unplanned hospital visits have solidified that it is still too soon to consider finding/returning to employment just yet. The fundraiser gala was incredible. Reese has challenged us on a few occasions recently but it is so uplifting to have Alan here to witness this growth and change. Overall, she is still an incredible kid and we feel so lucky to share each day together. We are 87 steps forward and 31 steps back. I will celebrate and share our smaller moments with you sooner but life is happy and the good is outweighing the bad for the first time in years.