Support Brandon's Journey with Heart Failure

December 26, 2023 changed our lives forever.

Brandon had been very sick throughout last December with what urgent care had diagnosed as pneumonia. Three antibiotics later and he was progressively feeling worse. He couldn’t lay down in bed because he couldn’t breathe, he could barely sleep, he was weak and tired, and his legs and feet were so swollen, they looked like tree trunks.

The day after Christmas, I looked at him and insisted that we go to the emergency department at the hospital right then. When they rushed us past several others waiting in the emergency area, we both had a sinking feeling this was serious. Within 2 hours, Brandon was diagnosed with congestive heart failure. It was a complete shock.

Hearing the words “congestive heart failure” took the breath out of me like I had been kicked in the gut. The immediate fear we felt was palpable.

The left ventricle of his heart was weak and not pumping enough blood. His heart was compensating by trying to pump faster. His heart rate was 120 and his blood pressure was concerningly high. His body was retaining fluids because his heart was not able to move blood around like usual. When Brandon was admitted to the hospital, he likely had 30 pounds of excess fluid on his body, constricting his organs and lungs, making it difficult to breathe and pooling in his legs and feet.

Brandon was admitted to the hospital in the cardiology wing that night. He had multiple tests during the 4 days he was there including a cardio catheter procedure to check for blockages and scar tissues. The good news was that he had no blockages and no scar tissues. The bad news was that his heart function was 15% (this is called the Ejection Fraction). A normal healthy persons ejection fraction is between 50% - 70%. He was very, very sick. We believe if we had not gone to the hospital the day we did, he would likely not be here with us today.

Our journey over the last 6 months has been a roller coaster. He left that hospital visit on 10+ medications that he has to take every day for the rest of his life. Some of these meds cost so much that we have not been able to get the exact medicine that is prescribed by his cardiologist. He completed 19 sessions of cardio rehab in May! (At a cost to us of a $100 copay per session totaling $1900).

Brandon had a cardio MRI in March which showed that his medications have helped his heart function increase to 35%! While this has helped him to feel slightly better, his energy runs out quickly and has not returned to any sort of “normal” function.

The most difficult part of this journey is the uncertainty. But, we DO KNOW that at some point, the medications will no longer work and his heart function will begin to decrease. We have been told that this could happen in 6 months or 7 years. We don’t know. We DO KNOW that at that point, he will be put on a heart transplant list. That he will likely have to have a surgery during the wait for a heart to place an LVAD (which is an external battery that will pump his heart). He may or may not have to be hospitalized during the time that he is waiting to receive a heart. We DO KNOW that the road ahead will not be easy. And we recognize that every day is a gift.

Brandon has not been able to return work since his diagnosis. Over the last six months, he received short term disability from his job. And while Brandon has held on to hope that he would eventually be able to return to work, he has realized and accepted that his heart will not allow him to work. This has been a difficult thing to accept.

We have hesitated to reach out for help, knowing that a lot of people are struggling right now. Several friends and family members have unexpectedly blessed us with gift cards and money for household needs that have helped keep us afloat. We are so grateful for each one of them!

We have set up a Gofundme for those that feel they are able and want to help us financially. Please only give if you are able… we don’t want anyone to feel obligated or pressured to help.

Most importantly, we would love your prayers for Brandon, myself, and our kids, Emerson and Evie. And we would love your occasional texts or Facebook messages… they truly help us feel loved and supported, even if we aren’t always able to respond.

Specific Prayer Requests:

- Pray that Brandon’s heart function continues to improve

- Pray Brandon’s medication continues to work and his body does not become resistant to it

- Pray for peace for Brandon as he deals with sadness, grief, his own mortality, and that he feels love and support from family and friends

- Pray that Emerson and Evie feel peace during this time as well as love and support from friends and family

- Pray for strength for me (Marli) as I care for Brandon, the kids, the household, and continue to work in my therapy practice

- Pray for all of us as we deal with fear and uncertainty about the future

Timeline:

12/26/23 Emergency room visit

12/26/23 - 12/29/23 Hospital stay in Cardiology

2/6/24 Emergency room visit- admitted overnight

2/7/24 - 2/8/24 Transfer by ambulance to St. Vincent Advanced Cardiac Failure Unit and admitted overnight

3/6/24 Began cardio rehab 3 days a week

5/15/24 Completed 19 sessions of Cardio Rehab

3/20/24 Cardio MRI showed heart function improved to 35% (indicating the medicine is working)

6/23/24 Short term disability ended