It was the Spring of 2012 when my husband, Freddie began having difficulty breathing. He would notice this particularly when trying to play basketball in the mornings before work and soon it became difficult for him to breathe at night when he would lie down to sleep. After a couple of visits to our family physician, things were getting progressively worse and so he went in again. This time I came with him. Our doctor ran a few tests, did a chest x-ray, that came back clear, and so then he did blood work. By the afternoon we received a phone call that the blood work did not look good and that we should immediately go to the hospital to get a CT scan of his chest. This is when we were told that Freddie had a large amount of fluid in his lungs that was leaking from his heart (this explained why not only was a game of basketball difficult, but when lying down, he was getting “choked out” by the fluids backing up from his leaking heart) We scheduled an appointment with a cardiologist in Des Moines. He told us the results of his EKG and blood work showed that Freddie had been having "silent heart attacks" and all signs and symptoms point to congestive heart failure. We could not believe what we were hearing.
Prior to this Freddie had always been VERY active and was EXTREMELY athletic, working out at least five days a week, including three early mornings before work to play full-court basketball at the local YMCA, and at least two days of weight lifting. During every season but winter, Freddie was on his mountain bike riding for hours, with a specific love for dirt trails - the more logs and ravines to jump, the better. Freddie coached nearly every sport you could think of; being active and involved in athletics was truly one of his passions. So this news hit him, hit us, especially hard.
After more tests and echos and a couple of daily meds, he seemed to really be doing fine. He would take it easier than he had before in terms of physical activity, but really, the rest of his summer was pretty low stress, which was a good thing, because we were expecting a baby boy in the Fall. Unfortunately, the Fall came and his health took a nosedive QUICKLY. By the time we went back to school (I work for Des Moines Public Schools, and at that time, Freddie was working for DMPS too) he was very ill, eating only an apple each day or forcing himself to drink an Ensure drink too. Breathing was VERY difficult for him and each day got scarier. We were fearful and there were a lot of tears. There were also a lot of appointments for bloodwork, echos, EKGs, Holter monitors, and a couple of hospital stays.
Through all of this I am creeping closer to my due date, adding more worry to what we were already facing. Finally, it was decided after a couple of days in our local hospital and Freddie receiving two IV drips to treat heart failure that he would be transported to Mayo in Rochester by ambulance. It goes without saying, I followed closely behind. His first day there, I will never forget meeting one of the cardiologists that told me, "He doesn't have weeks to live, he has days..."
He was moved to the ICU the next morning, and this is where he stayed for the next 28 days. I slept on a cot each night, not wanting to leave his side. It wasn't long before the Center of Disease Control and doctors tried to figure out how someone so healthy became sick so quickly. Cardiologists went in through his jugular and did a biopsy of his heart to see if they could pinpoint what virus might have initiated his viral myocarditis (heart failure caused by a virus) but they couldn't find anything unusual or rare. Their conclusion was that he simply had a bad cold and when his immune system was "down" the virus attacked his heart.
By the next day he had a balloon pump placed into his heart in the hopes that this pump, along with the IV drips would take the stress and some inflammation from his heart. He stayed lying flat for 14 days with no sign of improvement, but not from a lack of prayer. It was then that the cardiologists, surgeons and LVAD coordinators felt it was best that he move forward with an open heart surgery to place a Left Ventricular Assist Device (LVAD) into his heart in order to keep him alive while he wait on a heart transplant. Needless to say, this time was very emotional for us (an open heart surgery, finding out he needed a heart transplant, a baby on the way in a few weeks) but also a time when all we could do was lean into our friends, family and faith, trusting that The Lord would be with Freddie through it all.
The surgery was successful, and after his week and half recovery, Freddie was allowed to go home. A week later, in November 2012, I had a c-section and the sweetest little boy, Zion Amari, was born. I was so happy that I had Zion in Des Moines (rather than in MN) and even more joy-filled, that Freddie was right there by my side.
It is fair to say that recovery had been long with weeks of cardiac rehab, managing 15-20 meds a day and numerous set-backs all while managing life with a newborn. Freddie got used to living life with a driveline that led from his heart, out of his abdomen (which required daily sterile cleaning) and connected to a large controller and batteries that he carried in a pack or bag or vest 24/7. This included of course, a special waterproof bag that went with him even into the shower. This is also the time where the official wait for a new heart began. Freddie lived at home with the LVAD keeping him alive and all was fine until spring/summer of 2013. His health began to decline rapidly again. (ICD placed in March of 2013, ICD removed in August 2013 and a pacemaker replacing the ICD) I took him back and forth to and from home to Mayo more times than I could count. His kidneys began to struggle at this time too. (They were busy flushing so much fluid that began to leak again from the heart that they never got the blood supply they needed, so they started to fail.)
By the end of the summer cardiologists had him living at Mayo-St.Mary’s Hospital in Rochester, MN for around-the-clock care. While he lived at Mayo, I would stay at home with Zion and Freddie’s big kids, my stepkids (teenagers at the time) so I could teach middle school all week. (I knew I needed to maintain income and insurance and save my leave from work for his transplant.) I’d always pack the car on Thursday night so after teaching on Friday we could head to Mayo to visit Freddie for the weekend. Finally, by the Fall, even while living at Mayo, he had gotten very sick. His LVAD just wasn’t able to help any longer and his heart was failing him again. He was taken into surgery and his heart was removed and was replaced with a Total Artificial Heart (TAH) and he began bedside dialysis. This was a few days before Thanksgiving of 2013. Freddie continued to live in the ICU at St. Mary’s. My kids and I would continue to go back and forth to visit him. In January I received a phone call after school one day. There were cardiologists with Freddie to tell me that his match had arrived. That night Freddie was in surgery and he received the most generous gifts, a heart and kidney, from a 21-year old donor, Steve, who passed away in a wintry car accident. Freddie and I had to live in Rochester for three months after his transplants in order to attend all of the appointments. We rented an apartment while still paying our mortgage back home. It was surely a whirlwind with a baby and being a caregiver to Freddie too.
Since then we’ve been so touched to meet Steve’s family. They are so kind-hearted and they bless us whenever we see them or get a card from them in the mail. Unfortunately, we had to tell them last year that Steve’s heart and kidney are failing Freddie. He spent all of 2019 very sick again with multiple trips to and from Mayo and many stays in St. Mary’s as well. He has been officially listed for another heart and kidney. So…we wait again for the match for him. We know so much of what we are facing. For example, we know all about life with immunosuppressive drugs, heart biopsies, and trips to and from Mayo. We also know we will have to find a way for me to afford to take time off of work to be with Freddie for the surgeries and months of recovery. We know that we will need to find a place to live in Rochester while still paying for the mortgage in Des Moines. We know so much about what to expect, yet there is so much underlying worry and fear of what will be different this time. Freddie has been opened three times already (LVAD, TAH, and transplant) so there is more danger with this next sternotomy and scar tissue. This time around Zion isn’t a baby and I can’t haul him in a carrier or in a stroller. He is a second grader. There is stress around what will happen for him with school and time away from home or time away from us if he stays with family. However, we also know that we will be okay, we will get through this again because our families and friends and even people we will never meet will be with us to lift us up and support us on Freddie’s continued journey to another heart and kidney transplant. The kindness of others has blessed us continually over the years so I don’t have any reason to think the blessings, prayers, love and support will stop now.
Hey everyone, I shared earlier on social media, but decided to copy this to Freddie's CaringBridge too as many of you have followed Freddie's story for years from all over the U.S. Just because we have never met in 'real life' or you aren't on social media or we aren't "friends" on Facebook or Instagram, I wanted you to still see this opportunity to continue to be in Freddie's corner as we spread his message of the blessing of organ, tissue and eye donation. This seems like a good place to also remind you all that April is Donate Life Month. Please consider marking "organ donor" on your drivers license AND making your wishes known to your loved ones so that in your passsing one day, they'll be confident in your wishes.
Here's what I shared a bit earlier on FB and IG:
On May 8th I’m hoping you’ll join me in the Virtual Green 5K to support the Iowa Donor Network, walking, running or donating in memory of Freddie and his donor Steve.
We all knew “Freddie’s Fighters” as a slogan to show him we were standing behind him in solidarity in his health battles, but I’ve decided to keep that as a team name as we’re still fighting for Freddie’s cause for organ, eye, and tissue donation.
The Green 5K is held annually to honor the lives of organ and tissue donors, celebrate the lives of recipients, recognize those waiting for a life-saving transplant, and supporting organ, eye and tissue donation. We always loved the atmosphere on race day - it’s very special and uplifting! But due to concern around COVID, it will be virtual again this year. You can still make it extra special as you unite with family and friends in your own neighborhood, dress up in all the green, and join the opening ceremony virtually on May 8th on Iowa Donor Network's FB page!
If you’re in Des Moines, Zion and I will be wearing our green and walking the paved trails in Greenwood park at 10:30. You can join us if you’d like. Greenwood was one of Freddie’s favorite places to take us for a hike and to ride single track trails on his bike. This happens to be the park where we got married too.
(enter Greenwood Park off 45th and Grand, follow to the back and park by Ashworth pool)
On May 8th, if you walk, run, skip, hop, or stay at home but donate in his honor and you share a photo, please use the hashtags #freddiesfighters and #VirtualGreen5K The funds raised by the Freddie’s Fighters Team from the Green 5K will support Iowa Donor Network programs and iniatives and help save more lives through organ, eye and tissue donation.
I’ll share Freddie’s link below so you can join his team page. The price to join will be on this link (if you want the cooling neck gaiter & 5K finisher medal, race bib, etc., register by April 8th. All race packets will be mailed to you) On his page you can also pledge money by clicking the "Donate Now" to help me reach my goal for the Iowa Donor Network! PLEASE SHARE THE WORD for me by sharing his link or copy/pasting this message.
If you are on FB, please be sure you have clicked the 2021 Virtual Green 5K page for more details. And if you don’t already follow the Iowa Donor Network Facebook page you should consider doing that too. You’ll see the virtual opening ceremonies there.
HONOR those who have given the gift of life
CELEBRATE lives saved and healed
SUPPORT those waiting for a life-saving transplant
RUN or WALK for organ, eye and tissue donation
*Along with this post you'll see some old pics I found of us at the Green 5K. You’ll see one is a glimpse of a beautiful arrangement of lawn signs at the actual event to honor donors or those have received the gift of life. You can see Freddies in the background. Ive also shared a photo from this "Circle of Life" from a friend who ran in honor of Freddie a couple years ago.