When I first examined the consent package for the Meteoric – HF research study, I was intrigued to learn that I would have the option to undergo two subject interviews. The consent package said:
My reaction when I read the consent package and when I was interviewed was that have been wanting to let people know what it really feels like to have heart failure. But I suspect that some people who are in the study may be employed and fear the ramifications if somehow an employer learns that they have this chronic illness. Some employers might think that this makes an employee unreliable, or there may be insurance implications. So, I am grateful that the study allows for the interview to be an option but not a requirement. Of course, if one does want participate in an interview, the information provided will remain confidential.
Again, my life with heart failure is an open book because I’d like to think that what I share can help people. But even with me, sharing the information can be a bittersweet experience. The interview was by phone and was conducted by a company other than Amgen and Cytokenetics, the companies that are collaborating on the drug omecamtiv mecarbil. The interview lasted approximately 50 minutes. Once we went over the ground rules, the interviewer asked a series of questions designed to lead the participant into expanding on heart failure. As you can imagine, I did not need any prompts to pour out my heart (pun intended)!
The interview encouraged me to discuss both the experience of having heart failure, and also provided some opportunities where I could make some suggestions. For example, when I talked about the fact that heart failure had impacted my diet, I mentioned that there is a real need to get the patient connected to a good nutritionist right away. This is because in addition to having to avoid too much sodium, (which is well marked on food labels), you also have to avoid potassium (which in some cases is not even listed on labels). The reason you need a good nutritionist is because some of the potassium rules are not intuitive.
For example, avoid root vegetables – but what we mean by that is not things like carrots (which is a root vegetable) but more exotic types. Also, it’s okay to have green beans but not wax beans. They look the same to me – except for the color. Who would know this unless you have a nutritionist who provides you with good rules and a good list of foods with low, medium and high levels of potassium.
I also mentioned that being a heart failure patient can bring a whole new level of anxiety. I mean, you become very conscious of your heart and how it is beating through: (1) taking your blood pressure (which has a heart beat indicator); (2) feeling your heart beat when you are laying in bed in the silent night; and (3) if you have a heart device, knowing that it and its battery stands between you either conking out like the energizer bunny or going into cardiac arrest.
I told the interviewer that I thought my anxiety that comes with having a heart issue is exacerbated by the fact that I also have an obsessive-compulsive disorder. Strangely enough, even though I am very conscious of my heart beating, I worry less about having a cardiac incident and more about whether I left lights and appliances on, and about worrisome thoughts that jump into my brain uninvited.
I told the interviewer that I used to be a supervisor. One of my subordinates a number of years ago had a family member who developed a brain tumor. He would worry over what co—workers perceived to be incredibly commonplace and harmless things. The co-workers asked me why he was worrying about these matters. I told them that sometimes it is easier for you to invest time and energy into worrying about something that is not really threatening. This is because it is hard to get your arms around the catastrophic thing that waltzed into your life. That is what I think happened with me. I was too frightened to think about how my life might be impacted by heart failure. So my OCD gave me plenty of harmless stuff to worry about instead. I said that patients should be encouraged to find some stress management techniques and even a therapist to help them deal with the anxieties.
I also recall that I was asked to talk about the symptoms of my heart failure. Even though I no longer retain water, I still must watch my sodium and fluid intake. Picking up on the previously discussed need for nutrition education, I discussed the symptoms of retaining water and potassium, and how you must carefully watch your diet choices each and every day.
I discussed the anxiety that comes with having heart failure. Of course, I had already mentioned my theory already about why this anxiety exists, and how it is aggravated by worrying about simple things. But I thought it was worth bringing this up again as a symptom, one that reinforces the need for a beta blocker. Because I have noticed that when my anxiety sprints out of control, it is aided in the race by the substance known as adrenaline. Since adrenaline damages the heart, this is a symptom that I also always must be conscious of and strive to subdue.
I discussed the shortness of breath which I experience a number of times a day. Happily, it usually only occurs when I do things like climb a few flights of steps or walk up a steep incline. Fortunately, I am not one of the people who gets short of breath at night when I am trying to sleep, nor do I have to prop myself up on pillows. And normal activities that require raising my arms above my head, like drying my hair, does not cause issues. Sometimes when I am hurrying to get dressed, the effort of lifting my legs to put on a pair of hose or pants causes me to be a little winded, but that might be that I am moving too fast.
Nope – my shortness of breath comes mostly with physical activity or exercise and so it does not hound me throughout a day. But it never ceases to take me by surprise. I think it happens when I get lulled into feeling that I’m doing well. It’s heart failure’s way of ambushing me when I get in that comfort zone.
It sucks, but it isn’t life threatening.
The other symptom I brought up was fatigue. Even though I am pretty active for someone who has been diagnosed with heart failure, I have to admit that throughout the day, there is a constant level of fatigue that resides in me. It isn’t the “oh, I could use a nap” type of fatigue. It is that very bone tiring fatigue that makes you feel like your energy moved to a new location and failed to leave you a forwarding address. It is the type of fatigue that you feel has become a non-paying resident in your body for the rest of the time.
It isn’t life threatening, but for someone who loves being active, it is like a stone hanging around my neck.
Towards the end of the interview, I had to name the symptom or symptoms that I thought were the worst. For me, the diet and fluid restrictions suck, but because I am so disciplined, I have perfected my diet so that the underlying symptoms are manageable. The anxiety is something I always need to keep an eye on. But since I saw a therapist for a number of years, and also use coping mechanisms and family and friends to help me gain perspective, this is another manageable symptom. The shortness of breath are isolated events in the day so while they are an abrupt reminder, they are not a symptom that currently disrupts my life too much.
That left the final symptom of fatigue. To me, this is the absolute worst symptom that I deal with when it comes to heart failure. It is always present and makes me limit my activities to make sure I will have enough energy to last me throughout the day. The interviewer wanted to know if this was worse than shortness of breath. I told her that maybe I am fortunate that my shortness of breath is not that frequent, or it might climb the ladder of worst symptoms. But right now, the active person in me that wants to be released hates the fatigue.
There is one more question the interviewer asked me that several people have found interesting and are not sure how they would answer. It was whether I thought I would know if the drug I was given during the study was working, and if so, could I cite some examples of how I would know. I said that I would definitely know if the drug was working. I have no doubt of that fact. My friends and family always compliment me on listening to my body, and I know my body would give me numerous signs if a drug was improving my heart failure.
Here are the examples I would give. I would feel less fatigue, and might be able to do more throughout the day without having to take a number of rest breaks. If I had more energy, I might feel up to driving at night, an activity which I have pretty much put on hold. If the drug is working, I will be able to walk up steeper inclines without feeling short of breath. If the drug is working, I will again be able to climb 10 flights of stairs without a rest break – I used to do this each morning when I lived on the 10th floor of an apartment building. If the drug is working, I will be able to keep up with my sister walking through a shopping mall. (She still has the energy that I used to have!)
The interviewer ended the phone call letting me know that she looked forward to hearing from me at the end of the study. I also look forward to the end of study interview, because I know that the interviewer truly did want to listen to what if feels like to have heart failure. When I am finished with the study, I hope I am able to tell the interviewer that I am feeling a little bit – maybe even a lot– like the old Melanie!
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.