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2022 | HFSA

Living with Heart Failure: Robin Gage's Story

Patient News Heart Failure Awareness 365
Robin Gage Patient Story
Robin Gage preparing to do her favorite low-impact cardio activity - paddleboarding.

I am a mother, grandmother, and eldest daughter in a business-oriented family. I have led a healthy and hardworking life. That is, until my sudden idiopathic heart failure diagnosis in June of 2016. 
It is a mind-numbing, tragic, and humbling thing to be told that your heart is no longer functioning properly. The words “4% fraction rate” meant very little to the mind of myself and my grand-munchkins. For I only knew that I was sick. So sick that I was unable to ambulate without assistance. So sick, my husband, Gary, was deathly scared that our family would lose me. For Grandma Gage (G.G.), does everything for everyone. 
I was taken to the George M. & Linda H. Kaufman Center for Heart Failure Treatment and Recovery at the Cleveland Clinic of Cleveland, OH. I met a myriad of doctors and clinicians, including Boston Scientific Technicians. I was given a cocktail of procedures, medicines and treatment plans, and surgery was scheduled. Through it all, I followed everything that Dr. Randall Starling and his staff told me to do – my diet, my slow, progressive exercise regimen, as well as reading the many articles shared with me on the subject of cardiomyopathy heart failure. 
My recent annual cardio check-up tested my heart at its current fraction rate of 67% and rising. My recovery rate was so remarkable, my family has undergone genetic testing. We owe our future to Dr. Starling and the rest of the staff at the Cleveland Clinic. 
My goal is to give back in any way I can to assist this community. For all the health practitioners and the patients who have gone before us to allow heart failure recovery stories like mine. You can’t beat a healthy heart. I'm realizing that now., I might not be able to have a whole pie for the rest of my life, but just a slice of that pie is just as rewarding. And I’m okay with that. 

Read on for a Q&A with Robin:

How has your heart failure diagnosis impacted your life?

I have to manage my blood pressure and sugars daily. I use monitoring, testing and medications to keep my blood pressure and type II diabetes under control and at an even level. Some days, it can be a full-time regimen. I’ve also had to eliminate high-impact exercises like aerobics and running.

What types of lifestyle changes do you think helped your recovery rate the most?

While I am only allowed to do low-impact cardio, exercise has really helped control my heart rate elevation. There are surprisingly many more choices than I had previously thought that I thoroughly enjoy, such as biking, yoga, walking, swimming, and paddleboarding. All of these allow me to strengthen my heart muscle and keep my 300+ body muscles toned!

If you could give anyone who lives with heart failure advice, what would it be?

Be patient and do not be discouraged. If you do not get everything on your “to-do” list done one day due to exertion or fatigue, that is common after heart failure recovery. Just add that line item to the next day.

My cardio physiologist also gave me the most impactful words: “Your cardiologist and surgeons have done their jobs...with careful monitoring, you need to know that your heart failure recovery is now up to you.”

With that said, exercise has been something I have committed to in my heart failure recovery journey. I started slowly with elastic band exercises, then weights – low impact strengthening exercises, slowly increasing my reps from 10 to 15, and 15 to 20. I did this until I was able to walk to the mailbox without shortness of breath or exertion. Once I reached that goal, I started walking short distances, then swimming and have moved up to paddleboarding.

For those living with heart failure who want to get more involved in patient advocacy, where would you suggest they start?

Most of the doctors, surgeons, practitioners, or heart failure centers are aligned with an advocacy organization (.org) like HFSA or others. Ask them who they are connected to and send them an email or give them a call. That is what I did after my successful recovery rate was evident. I knew there were others who were going through the same dark tunnel of sudden heart failure with very little connection to others who had recovered, survived and thrived!

I wanted to inspire others. My heart surgeon said, “Let’s make a deal. We will help your heart recover from this idiopathic heart failure. You can then inspire so many others with your successful recovery.” I did just that, and I have never looked back. It has been an incredible journey meeting so many courageous patients and their family members who, like myself, have put one foot in front of the other each day to continue recovering towards post heart failure living. It is my way of paying it forward.