Since near death at the end of 2006, I have been under the excellent care of the OHSU Heart Failure and Transplant team. Over the years of ambulance rides (3), emergency visits, hospitalizations, catheterization2 (13), surgeries (3), defibrillations (8)and weekly chest pains, I’ve visited that heart team at least once a quarter–at their insistence.
But for the last year, I’ve avoided it. Yesterday was my first trip back up to the 9th floor in 14 months. Partly out of an awful experience last year with a newer member of the team. Party because I just needed to live outside the heart failure medical bubble for a while.
I have to say, it’s felt good. Even though I have had some hospitalizations and surgeries, none have been directly heart related.
But I’m 65. I’m having some difficulties. My chest pains have become more severe. And Judy and I have questions. Fortunately I was able to meet with a superb cardiologist who a few years ago changed my life by giving me clear parameters within which I could exercise and train (I’m an old runner, marathoner). For the next year or so I slowly worked my way up to running for miles in these SW Portland hills.
A combination of knee injury and sudden fatigue + losing my breath set me back to a much more sedentary life. Walks in the hills, hikes, walking from the car to the grocery store door…any of these can require stopping for rest and to get my breath back. It’s weird. And disappointing.
We spent 3 hours at OHSU cardiology. Some waiting. Most in discussion and exam. It was illuminating, sobering and hopeful. Here is my status and the new information we gathered:
Heart failure: the heart cannot pump enough blood and oxygen to support other organs. There are 4 classes of heart failure. I went all the way to IV back when I was near death (with an Ejection Fraction of 11% where normal is 55% to 70%). Between medication and an experimental open heart surgery (Left Ventricular Remodeling where the heart is literally cut in half and re-shaped), I have done well.
A Heart Failure diagnosis has about 40% mortality rate in the first year. About 50% in the first 5 years. Heart Transplant remains the ultimate treatment in Class IV. So I am kicking ass. But I do have a terminal illness and it’s trajectory is certainly bending downwards.
Our questions, though, were “How ill am I?” “What are my parameters for activity and excercise?” “Am I still in Heart Failure?” “Am I still heading for transplant?” “What can we expect?”
Tough, tough questions. The fundamentals are that I have Class III Heart Failure and I will never get better than that. I have Ischemic Cardiomyopathy, Coronary Artery Disease, Congenital Heart Disease and Ventricular Dysplasia…weird heart rhythms like Bigeminies.
As my doctor said, “there is a cliff out there. And you want to know where the cliff is.” Yup. We don’t really know. And we don’t know if my quick fatigue and breathlessness at exercise is from just being out of shape or because my heart system just can’t handle it–or a combination of the two.
Action: my last cardio-pulmonary test was 4 years ago. Jill wants to get one now and repeat it every year. This is where I’m wired to a heart monitor and exercise to failure or heart danger so that we can really determine the parameters for activity. The new data from this test will also help determine the scope of damage and function of my heart and give us window into the vicinity of my “cliff.”
I’ll get an Echocardiogram the same day to further determine my current Ejection Fraction and pumping/circulation status of my heart.
I’ve tried to include links for those who want more information, especially heart failure patients who follow this blog or are looking for information.
To those patients, if (like me) you came home from your initial heart failure diagnosis and Googled it to find your chance of dying in the coming year or so is about 50%, I say this:
Enjoy life. It sounds eerily simple and trite until you have a terminal disease. I’m not talking about resigning or throwing in the towel. I’m talking about real freedom.
Stop all the editing. Choose people who bring light to your life and let go of those who do not. Let your funky flag fly free. Try anything. What, truly, do you have to lose? And love without constraint or conditions.
But work for more days. What you eat, what you drink, what you do…Even Class IV Heart Failure isn’t a fait accompli. I was done. People came to visit and, in their own ways, say thank you and goodbye. I grieved for all that I would miss.
But I’ve lived. 10 years for goodness sake. Medications meticulously followed. Good healthcare and reasonably wise home care. A universe of incredible friends. A granddaughter!
If you’ve come to this blog through a search on Heart Failure, rejoice. You’re alive. If that isn’t enough, reboot. We are above ground, my friend.