Second of two parts
Educator Tim Hanner shares his story in his own words — a story of the journey through discovering his kidney disease and two transplants, a journey of love and kindness and gratitude, a journey of friendships, family and faith, a journey of reflection, acceptance, and strength. And, when all is said and done, it’s the story of a life embraced and well-lived.The Reality of a Second Transplant
Between 2016 and 2019 my health began to gradually decline. It became clear I would need a second transplant and the process to begin the search for a donor started in the spring of 2019 following another biopsy that showed a second disease causing the kidney failure. This was a surprise to the doctors, and I went to the Mayo Clinic once again for a second opinion. They, too, were baffled as to why this biopsy showed a different disease than my previous six biopsies.
The good news from this was the new disease, IgA Nephropathy, could be treated with steroids and other medications following my next transplant – and that it had masked itself behind the original diagnosis, focal sclerosis, meaning there was only one disease we were working to treat.
I was also told that even with the medications it is still a possibility the disease would attack the new kidney, but at least I now had some definitive answers and possible solutions.
Tim Hanner — after and before
As the disease progressed in 2019 it became necessary to step away from my work with NaviGo and focus on getting healthy and ready for a transplant. I was told in July 2019 that I could expect a surgery as early as September for Christ Hospital had a number of people come forward who wanted to be tested to donate – and they already had two very strong candidates who were excellent matches.
The reason many people came forward was due to articles written by Judy Clabes from the Northern Kentucky Tribune. Her insightful stories to my family’s journey helped get the news out that I was once again in need of a new kidney. The stories were shared via social media, and Christ Hospital reported the inquiries regarding donating were phenomenal. I will forever be grateful for Judy and her team for sharing important, community stories such as mine; the stories she shared truly helped save my life.
As potential donors came forward, I was only told that the transplant team was considering candidates. Due to HIPAA rules, the name and information regarding the donor cannot be shared with me unless it is done via the donor. All I was told was that they were considering the two candidates.
My job was to try to stay as healthy as possible as my kidney function declined and to be patient. People often ask me if kidney failure hurts. When your kidneys fail and your function is below 20%, you are eligible for transplant. At that time, I started experiencing overwhelming fatigue and muscle cramps. The side effects differ due to the overall health of the individual, but the fatigue is a constant in everyone I have met who were on this same journey, and the lower the kidney function, the more increase in fatigue.
The way I describe it is when you are tired and you take a nap, and you wake up exhausted – and your muscles feel “out of breath”. It makes it hard to focus and can be very frustrating, thus patience and listening to your body is critical – it is important to rest when you need to rest. I was blessed to be able to do just that both times in the year leading up to my transplants. Although I was working the first time, I had the flexibility and the team support to be able to rest when needed, and that was critical. The other thing that was very important for me to remember was that the safety and well-being of my donor and myself was first and foremost to all decisions made by the transplant team at Christ.
The first two donors who came forward and were excellent matches via bloodwork were eliminated due to minor medical concerns for their health. Both had gone through the entire rigorous and detailed testing process and were rejected at the final surgeons’ review. While disappointed, I respected the decisions to protect the safety of donors – and I knew this would delay the surgery until a qualified match was found.
From September through December, four more people, including a business partner, Steve Hater, and my younger sisters, Jane Allen and Jennifer Snodgrass, made it through testing – all the way to the surgeons’ review, only to be rejected for various, important reasons. Once again, Judy Clabes and the Northern Kentucky Tribune shared an update on my status in the fall and it was shared many times on social media – and even picked up and shared (as the other stories were over the years) by Hank Bond, from the Greenup Beacon, connecting me back to people I grew up with in Russell, Kentucky. The selfless acts of these caring individuals – to come forward and want to donate – is incredibly humbling and overwhelming to me. Marlene was tested. My daughter, Chris, was tested. There were other good friends, former colleagues and people I did not even know who were tested. The kindness showed is something I can never repay. I am forever grateful.
On Jan. 4 of this year, I received a message on Facebook from a former Woodland Middle School student I had in class middle school close to 30 years ago. She had read a post I had shared. Alyssa Staggs Vanderpool, who now is an outstanding teacher in the Ft Thomas School District, reached out and said, “You stated you are still waiting for a second kidney transplant? How can I get tested to see if I am a match?” I shared the information regarding who to contact at Christ – as well as the articles that had been written (which she had already read). Her response was “I will call her on Monday. Thank you for the information. You are the reason I am the person I am today. Thank you.”
Staying safe at home
This message left me very emotional and humbled. I had followed Alyssa’s career and actually talked to her at a Career Fair at Eastern Kentucky University over 20 years earlier as I was recruiting teachers for Kenton County. She was, and still is, a very accomplished musician/singer and with her passion and talents, I knew she would be a very impactful educator. And I was correct. She began her career in Beechwood and has continued touching lives in Ft Thomas. For her to credit me with any part of who she is was surprising to me.
Alyssa contacted me a few times with questions during the testing process and wrote to me on Feb. 3 and said, “I’M A MATCH!” – and she asked me to give her a call. Knowing the process of testing and elimination, my hopes were not high and I explained some of this, while remaining upbeat and grateful, to Alyssa. She kept saying, “I am going to be your donor! I am going to save your life!” And her determined attitude was infectious – I began to believe her. Once she was beginning to go through all of the testing, my sister, Rebecca, said she would be happy to speak with her to answer any questions since she had been through it all just seven years before. Alyssa shared that the talk helped a great deal and she answered questions even the hospital could not answer because of Rebecca’s first-hand experiences.
Throughout February I started feeling worse and worse, and I could tell my kidney function was rapidly declining. I was gaining lots of weight and becoming very tired very easily. Alyssa became close to her Nurse Advocate, Jessica, as she went through the process throughout the early part of the month that included very extensive testing to make sure she was in good health and that her kidney would be a good match.
By Feb. 20, Alyssa found out her testing went very well and we could proceed with surgery if she was ready. The only thing left was the review by the surgeons and I was aware that was happening by speaking to Alyssa and to Paul, my incredible Nurse Advocate. Once Jessica called Alyssa to let her know we were approved for transplant by the surgeons, she asked if she could call and let me know.
When Alyssa called, she screamed, “We were approved! I told you – I am going to save your life!” I was stunned! And we both were overcome with emotion. I asked her then, and several times in the weeks ahead, “Are you 100 percent sure this is something you want to do?” Alyssa never wavered and even often said that doing this was a gift to her as well – very similar to what I had heard from my sister just seven years prior. These kind acts of selfless love are incredible to witness when you see them on TV or read about them in news stories; but to have them happen to you simply makes you want to be a better person for others.
Tim and Marlene.
The Wait as COVID Intrudes
In late February we were given the date of April 7 for surgery. As my health was rapidly declining, my doctor, Dr. Joseph Kremer, very wisely decided to put me on dialysis once again to help me go into transplant in the best shape possible. I had a chest catheter placed on March 3rd and began dialysis on March 4th, back in my old familiar spot at Davita in Crestview Hills.
I knew much more this time and used my time there as wisely as possible – Monday, Wednesday and Friday from 5:45-10 a.m. I kept a journal, read and meditated as much as possible. All was progressing and going well – and then the coronavirus started to spread rapidly and uncertainty set in everywhere. On Friday, March 13, we were told that the transplant was being put on hold as all ‘elective’ surgeries in Ohio and Kentucky (as well as the rest of the nation) were being suspended. Although I was disappointed, I understood it as it was being done to protect us for the surgery would make both the donor and the recipient very vulnerable while in recovery. Alyssa and I spoke often and we both worked to keep each other’s spirits up. Marlene and I were told to quarantine once I started dialysis and we had no idea that when we hugged our kids and grandkids in late February, it would be the last time for months and months to come.
Knowing this delay and my time on dialysis could last for months, I looked for positive distractions and became obsessed with all things COVID – and I read all I could and watched the number of infected as well as the number of deaths worldwide rise on a daily basis. New meanings to old terms were emerging as we were kept up-to-date by daily briefings from Governors and the CDC. “Social distancing” and “the vulnerable” were just a couple of terms we would hear frequently, and I realized I very much was now considered one of the most vulnerable due to my underlying health conditions (kidneys, immunosuppressed, diabetes).
But elderly people 65 and older, healthcare workers, EMT’s, police and fire were also very vulnerable in what was now being realized as a global pandemic. It was an overwhelming and somewhat helpless feeling as the news and recommendations were changing daily. While on dialysis on Friday, March 20th, those confusing thoughts gave way to the question of what could be done to pull people together – people who are being impacted in similar ways to these stressful times? I decided to create a Facebook group, knowng that there are many of us going through the same things – elderly parents, a family member with health conditions, essential workers being put at risk, caregivers to people who are vulnerable. The purpose would be to create a positive, supportive community of people who would come together and share with each other and perhaps realize we are all in this together.
Within a couple days, there were over 300 members and the responses were outstanding. And of this writing there are close to 2400 members – and the community has live concerts each Tuesday evening (from talented performers who volunteer their time) and daily games via Bev Johnson. People post positive, humorous or informative messages for others to read – and the support to one another is truly inspirational. And it would prove to be very helpful to Alyssa and me as we went through the transplant process.
At Christ Hospital, Alyssa and Tim await the surgery.
I share this because what started out as a distraction, as something I could do and somewhat control at a time when my life felt very much out of my control, has turned into a labor of love that has helped many, many people – including me.
Dialysis went well over the next month and I started feeling better between sessions. I continued writing, reading, and worked to stay positive – and connected with Alyssa on a frequent basis. The support she received from her family, friends and school district was exciting to see! On Friday, May 8th, I received a call from Alyssa and she screamed, “We are back on!!! We are scheduled for June 2nd!”
We were both excited, and the realization this was going to happen started to sink in for the first time. The next month was full of more testing to assure we were indeed physically ready, including two separate COVID tests – one the day before surgery. Alyssa and I were to check in at the hospital on June 1st and we were not permitted to have anyone with us. Both of us had tests scheduled and when we were settled in our rooms, we were able to get together and talk for a brief time just before I had to attend my final four-hour dialysis session. Her positivity and excitement truly helped me. As an organ recipient there is a feeling of humility and guilt – you are putting someone through a very serious surgery, and the donor is going into the operation feeling strong and healthy, and you know they will wake up feeling some pain and weakness.
Alyssa (as well as my sister seven years prior) helped alleviate those concerns. The biggest difference this time around was that I was there alone – Marlene would not be able to be with me until after surgery. The same was true for Alyssa and her Mom. I knew Marlene would be worried and I wanted her to see I was strong and confident so we had a long Facetime call that evening before I went to sleep. Seeing her helped me fall asleep quickly for I was exhausted.
The next morning, I was not able to see Alyssa before she went into the operating room. Her surgery was beginning about an hour before mine for they were removing her kidney and timing it to be able to place it inside me as soon as possible. I meditated and prayed as I waited, focusing positive energy and prayer on Alyssa. There was an overwhelming sense of peace as I waited – a feeling of calm at a time when I should be very nervous or anxious. My worries and fears for Alyssa subsided and I somehow knew she would be fine. When I was taken into the operating room, I was met by a team of incredible nurses and doctors who reassured me that not only was I going to be in good hands throughout surgery, but also that my donor was doing extremely well and that she was smiling and chatting as they took her in to begin the procedure. This helped to further assure me all would be fine.
As I came to in recovery, the first thing I remember was asking how Alyssa was doing and I was told she came through the surgery “like a champion” – and that when her kidney was connected to me, it began working immediately – it took to me right away and was producing as well as any new transplanted kidney as they had ever seen. Over the next few hours, I was able to finally see Marlene and that gave me great comfort. She had spoken to Alyssa’s Mom so she was able to tell me how well Alyssa was doing. Per hospital protocols, Marlene had to leave by 7 p.m. – and she could return after 9:00 AM the next morning.
During the evening my cell phone rang and to my surprise it was Alyssa. Granted I was under the influence of pain meds so I am not totally sure how I sounded or do I remember all we discussed; however, I do remember her saying she had talked to her nurse and she would like to come and visit. I was surprised and happily agreed, and within an hour she was wheeled into my room. I was shocked by how good she looked – and by strong she was. I knew she was experiencing some obvious pain but she was amazing. Both of us were masked and I was in my hospital bed and she in her wheelchair, but she stayed and we talked for over an hour. The joy in her eyes was shining and this gave me great relief. It was a scene I will always remember for she actually sang a song while she was there and I knew it was difficult for her. The bond she had already created with her nurse was evident and it did not surprise me – it was like they had known each other for years. That is who Alyssa is.
Alyssa was permitted to go home the next afternoon. Thanks to her Mom, I knew she would get phenomenal care. I also knew she would be very sore and it would take time to heal since I had watched Rebecca’s recovery after the first transplant. I stayed in the hospital until Saturday as they ran many tests to ensure my body was not rejecting the kidney. The way it was explained to me was that your body knows it has a foreign organ that has infiltrated and it tries to get rid of it, thinking it is protecting. Therefore, the patient is given various medications to help protect the new organ (anti-rejection drugs).
Alyssa and Tim, post-transplant
Because this was my second transplant, I was told that the body was even smarter than the first time so it works harder to reject the new kidney, thus I was on stronger oral and intravenous medications. The doctors were thrilled with my status and were very optimistic about my progress moving forward. And the staff at Christ Hospital were fantastic. They went above and beyond to ensure we were cared for in a meaningful, personal, professional way.
The Road to Recovery
So many people helped Alyssa and me throughout the surgery and as we came home. Alyssa received excellent care from her Mom and support from her entire family. Our daughter, Chris, kept everyone posted on social media and that led to an incredible outpouring of love and support. The Northern Kentucky Tribune wrote an update to their stories and it was picked up and shared by the Greenup Beacon. That led to more messages and prayers that truly helped more than anyone could know.
Marlene kept many people up to date via text messages – and she worked hard to prep our home for my arrival. Our daughter also organized a ‘meal train’ for three days a week over six weeks so worrying about meals each night while recovering would lessen the burden of care for Marlene. We are not permitted to get visitors, go to a grocery store, be in public, etc. This has proved to a much more difficult recovery time for her as a caregiver than the first surgery so the kindness of others providing home-cooked meals and gift cards to restaurants has been greatly appreciated.
It has now been a little over six weeks since the surgery and Alyssa has progressed incredibly well. She is walking for exercise and is able to be out in public (wearing a mask and socially distancing). We talk often and know we are forever connected. She is family. As for me, my kidney function is higher than it has been in over 15 years. When I came home from the hospital, I was walking a mile within a week; two miles within two weeks; and three miles within three weeks. I now walk between 2-3 miles per day, have much more energy and am healing very well. I am eating healthy, losing weight, and drinking 3-4 liters of water each day per doctor’s orders. I still have many restrictions – lifting weight limits, no working in the yard, etc. Plus, we still have to quarantine for at least six more weeks and we are realistically looking at staying put until there is a vaccine for the virus.
The lessons I have learned from this journey are many
I learned my wife is super-human and is the most caring, loving person one could ever know. I also learned hope and faith are key to keeping a positive attitude. I have had seven kidney biopsies, two lung biopsies, two liver biopsies, two angiograms, a bone marrow biopsy, three chest catheters, two extended stints on dialysis, two kidney transplants and many other procedures over the past fourteen years – and I know I am blessed. And the other patients I have met along the way showed me that my experiences are mild in comparison; their bravery and courage as they go through treatments and battle diseases are inspiring and helped me know I could handle anything that came my way.
I learned that family is everything – from my son, Jon, changing his work schedule to be there each day at 4 a.m. so he and his wife, Katie, who works evenings, have coverage for their daughter each day because we are no longer available to help – to my daughter, grandchildren, and siblings checking on me on a daily basis.
I know it sounds cliché’ but I learned each day truly is a blessing, a gift, and I am learning to slow down so I can appreciate the moments that occur throughout each of these days.
And perhaps above all, I also learned how good, kind, and giving people are.
At a time when it appears that we are polarized more than ever due to political, social, or religious beliefs, I have experienced how people come together and rally behind, and show love, empathy, and compassion for people who are in need. It is overwhelming to experience.
I am forever grateful and forever changed.
