Every six months I steady myself. I spend a couple therapy sessions talking about my anxieties and worries about my impending cardiac appointments. We talk about all the ways I feel well and all the ways I want to feel better. We talk about the types of testing that will be done and the various ways I dislike the tests and how I can better tolerate them without resorting to complete dissociation which does no one any good. We talk about what I would like to hear and the things I am worried I will hear. I prepare. I am ready. 

Yesterday was my six month appointment at The University of Nebraska. I have been seen there for the last two years and really like my team. I trust them and their style of care. I feel safe there. Since starting with them I have alternated testing; echos in the winter, stress tests in the summer. Yesterday was the stress test. 

I have a long standing hatred of stress tests. If you’ve never had one let me paint a little picture for you. First, you are hooked to a six lead EKG unit which is fastened to your waist. Then a blood pressure cuff and pulse ox on one arm. At this point you are put in either a treadmill or a stationary bike. Thank goodness I do the bike these days because the treadmill is a level of torture I do not wish to ever experience again. Once mounted on your stationary steed comes the nose clamp preventing you from breathing out your nose and the mask that straps to your face like an unruly octopus with a tube that goes in to your mouth so all of the oxygen you take in and blow out can be measured. It’s a real treat. Then…you pedal while monitored by the nurse and a cardiac specialist. And being the sadists they are, they increase the resistance steadily while you have to maintain speed so data can be collected. This goes on as long as you can stand it, preferably at least 8 minutes, until your heart rate hits 160 and in my case everything including your brain has turned to jello. 

I have been “studying” for this test for a year. I got a stationary bike in my house and I used it as much as I could. I really did poorly on it last year and I was determined to go longer and get better data this year. To be fair, that goal I did achieve. I was able to test for longer and get better data. 

“I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome.”

This is the part that I hope you’re still here for, I don’t want to have this conversation over and over again. I’m not sure I can take it. I want to rip it off like a band-aid and just have it out in the world. I failed this test. I failed it with flying colors. And here is the important part, no matter how much I “studied” I could not have changed the outcome. I say that as much for myself as anyone else.

Yesterday, during my appointment, the one I went in to with the good attitude, ready to hear good news, turned on me pretty quickly. I have known for a long time that my heart is not in great shape but I have been hopeful that I could somehow control the situation. Diet or exercise my way out of the natural progression of my defect and it’s repair. That just isn’t how it works. Small issues I’ve been having for months turn out to be indicators of a larger issue. My VO2MAX score was 11. Last year my cardiologist was not comfortable with it being 13. A “normal” 40 year old has a score between 36-41. 

What does all of this mean? Well combined with other smaller issues, increased swelling in my limbs, cramping, tiredness, it means that my heart failure is progressing. It means that my heart is not able to oxygenate my body like it could before. It means that it is time for us to bring in the Advanced Heart Failure and Transplant Team and get them working with me so that when the time comes no one is in a rush and we have time.

It was a blow for sure. It was a shock. And I am dealing with it in waves. I am having moments of extreme commitment to doing all the things right to make sure I am in the best shape I can be when the time comes for whatever is next. I am having moments of angry tears and sadness. I am having all of it and damn it if I’m feeling it all (stupid therapy, stupid “feeling your feelings”). 

So this is the news. This is where I am. I am okay. I have the best support system. Nothing is happening yet. Things will move slowly for a while. I just put my foot on the start of a new path. I just admitted that there was nothing I could have done to change this. I don’t have control of this and goodness do I love control. I want you to know because I don’t need or want pity. I am okay. I am the same person who walked in to that appointment yesterday. I am curiously strong like an Altoid. I may be a little slower these days but I am strong. I will need help and support to stay the course, to watch my salt, to not overload on water, to eat heart healthy, to move as much as my heart will allow. I do not need to be treated like I am fragile, I need to do as much as I can as long as I can. I can do it. I’d like you there with me.