I know I haven’t written in this blog for a couple months, and I am sorry for the length of silence for anyone out there who is actually following along. It was partly due to my absolute disgust at this process, and secretly just “wishing” the heart failure away – because if you don’t acknowledge or “feed the beast” it will go away, right? Nope. And, I was simply waiting for some news to write about. Last week, after months of back-and-forth with the insurance caseworker, my angry and “over-it” local cardiologists office and the new transplant center, I received the news I would be accepted for the initial consultation at the new center. Whoopie…ugh. I may have become jaded in this grueling regimen: excitement of progress one moment, to back-sliding for months, in the next. I will hold my excitement at this new establishment after the first appointment – lessons learned, and all.
During the interim of this transplant center swap, and after I realized ignoring my health isn’t wise, I decided that I needed to take charge and have another Cardiac MRI on my own. I was supposed to have one scheduled in November of 2016 when all of this began, but everyone was waiting on my settling-in with a new specialist and transplant center. Of course, that didn’t happen and so the MRI went to the wayside. Because my echocardiograms are so difficult to read, (my ribs are too close together) I need a Cardiac MRI in order to get an accurate updated ejection fraction and other information. Come to find out, the Cardiac MRI is the most accurate form of diagnosis anyway. It is difficult to get into another transplant center without an updated chart and my last MRI was May of 2016. I knew I had to have one, and I really just wanted to know where I was at in my journey of heart failure. I admit I also hoped that maybe, by some miracle, my ejection fraction had improved and that the aortic valve repaired itself – it could happen, I theorized, in my desperate attempt to make all of this disappear. The issue was, I no longer had a cardiologist to order the MRI. I decided to go to my general practitioner and ask him to order one. After some convincing, he did.
The MRI went well, I thought, as I did not have as hard of a time holding my breaths as the last visit in May of 2016. The technician would tell me that the reason my breath-holds were easier was because my heart rate was so fast and therefore, in-between beats where you held your breath, was quicker. I continually have a heart rate between 100-120. I still have low blood pressure though. Cardiologists haven’t figured out why this is…yet. Maybe the new specialist will. Anyway, after the MRI was over, the technician said that I was having long pauses of no electrical heart activity between some heartbeats. “Well, this is new,” I told her. I believe she was talking about sinus pauses but this is still to be determined. I know that it frightened her. My MRI results came back showing a slight decline in function, with the following results:
- Dilated left ventricle with severe LV systolic dysfunction with an ejection fraction of 32.1%. Findings consistent with non-ischemic cardiomyopathy.
- Severe hypokinesis of left ventricle -mid ventricle and apical level.
- Severely abnormal left-ventricular end-diastolic volume and severely abnormal left-ventricular end-systolic volume.
- Moderate aortic valve regurgitation.
- Mild mitral valve regurgitation.
- Mild tricuspid valve regurgitation.
- No masses, effusions or blockages.
As with all heart function tests, it isn’t the numbers so much as the trend of those numbers, and, more importantly, how you are feeling. I can tell that I am declining because of the effort it takes me on some days. I am losing my breath more often and able to do less. But this isn’t my everyday. Last week I was able to do some things on my to-do list, and actually felt pretty good.
I have determined that having heart failure is likened to being a new mother. You have days that the baby sleeps, eats well and you can almost get other stuff done; like taking a shower. Then, there are those days that the baby’s care is all-encompassing: the house chores and personal needs must wait. Add to this scenario the constant fatigue, which never seems to be satisfied. Even though that fatigue is ever-present, there is some excitement on the odd days that other stuff can be done. That maybe a sense of normalcy is resuming. It seems there are never enough of those days. My “baby’s” name is Ethel. She is the persona of my old, pissed-off and ailing heart. Ethel tells me, (in her grumbly tone) “Nothing will get done today! Not showering, not laundry…nothing. I will allow you to sleep and eat only small amounts, because it is too much work.” Ethel is mad at me because last week was a good week (the entire week!) and I was able to get a lot of things done. She is making me pay this week.
I have learned when I “feel good” and somewhat normal, on those days, to make the most of them! I try to do an activity that I really have wanted to do: last week it was canning strawberries, making homemade butter; experimenting on making gummy bears from wine, and 2 attempts of making buttermilk biscuits (both failed but I tried). I also was able to do house chores and even help the family paint the exterior of the house. It was a GREAT week! I almost dared to think maybe the appointment at the transplant center wouldn’t be necessary. The overwhelming hope that things aren’t quite as bad as they seem, always hangs around. But then this week I am down again. I haven’t much energy to do anything and have found that I am sleeping a lot. I am just dog-tired and even the smallest of tasks are taking my breath away. It was all I could do to fix dinner last night. This is the paradox of heart failure; I feel good but I feel awful. Try explaining that to a specialist. I guess eventually, I am told, all my days will be filled with feeling awful. That sucks.
In this journey, I look for the lessons – something my kids will tell you I do about every event in their life too, much to their dismay. I have learned that I spent much of my earlier life 5 steps ahead of where I was actually living. My father drilled into us, at a very young age, that you had to have goals, and you must always be striving to reach them. I took that lesson to heart and I was always looking forward to the next project or event, without really enjoying the current fruition of my hard work. There was always more work to be done, and more projects to be designing next. I was never just satisfied with where I was at. But what I have discovered in being forced to be “still” with this illness, is to enjoy the here and now. To really take a hard look at what your reality is, and instead of finding ways to improve upon, or elevate that experience, to just revel in what you DO have. It still proves to be a hard lesson for me. Especially with this illness; because as much as I look at it, examine how to fix it, and strive to do everything in my power to improve the situation, here I sit. Still. No answers. No improvement. No goals met.
Amongst the frustration of “being still” I have been conscientious of really trying to enjoy and “live in the moment” on the good days; to not waste them by wishing I had, or was doing, something else. Being present has been the lesson. I get it now. I understand when people say, “you have to be dying to really enjoy living” because all the preconditions we assign to what a “good life” is, doesn’t mean shit anymore. Goals are a good thing to aspire to, I will never stop reaching ahead as it is too ingrained into my personality, but I have realized that they shouldn’t steal the happiness of what is going on now. Now is all that is really for sure, for any of us; sickness or not. And there is ALWAYS something to be happy about; sickness or not. Keeping goals in perspective, and as a guide only, is a way for them to work for you, and not you to keep feeding them and stealing from your today. Take a look around and know that if nothing goes according to your life-goal plan, that life is still pretty great anyway.
For me, this week Ethel wins. But, hopefully, next week I put a diaper on that “baby” and get back to finding happiness in accomplishing the little things. That is the goal anyway!