In the age of Covid, we have all become weary of hearing or reading depressing stories in the news. It’s hard to remain positive and to find joy in life when you are confronted each day with the case and death count. The headlines are so disheartening that I don’t even want to read the details of the stories.
Please don’t misunderstand me. We need to face the fact that this virus is not going away anytime soon and is a real health threat and even a threat to life. We do not need to have this reality sugar-coated for us, nor do we need people to minimize the risks we are facing. But I also think humans are have more motivation to move forward and live in harmony if there is hope in life. Sometimes, but not enough times, I see glimmers of hope in stories in the media. Hope that scientists are discovering therapeutic drugs; hope that there is progress on a vaccine; hope that people are recognizing the need to act selflessly and make sacrifices for the greater good and health of all.
Being weary and lacking hope to live another day is not a new feeling on this earth. If you don’t believe me, just crack open the Bible to Psalm 13. According to Walter Brueggermann, this is a Psalm of disorientation. My understanding is that a Psalm of disorientation means we feel like we have sunken into the pits. (Apologies to my minister if I’ve totally missed the point). If you read the Psalm below, you will see that the pits is clearly where the author is located when he begins to write. But he eventually works his way through his complaint and petition to God, and the motivation for why God should act. In my mind, having regained orientation he praises the God who has never forsaken him:
1 How long, Lord? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
3 Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.
5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing the Lord’s praise,
for he has been good to me.
I guess you could say I was in a state or disorientation over the last few weeks, and you can probably add other 'dis' words like dismayed, discouraged, disgruntled, etc. I too wondered where God was, and why he was hiding his face from me and from my failed heart. I had sunken into the pit and all I could see was the enemy. But you will see that God sent his messengers to bolster my faith and my heart strength, and to restore my praise for a God that always has my back.
You’re wondering who is the enemy? For me, or for any patient with chronic illness, the enemy is something we cannot see. It is something that attacks our bodies in ways that we find hard to explain. We live with not just sorrow in our heart but anxiety in our soul. We may have a string of good days, but the agony of the chronic illness always resides in the back of our mind. Symptoms become not only something that we monitor but something that we fear because they may be a warning that we are about to be ambushed again.
You are thinking that my prior posts reported how good I had been feeling while in the meteoric heart failure study. While that was true, things seemed to veer off course in the past 3 weeks. During the period I was preparing for my colonoscopy, I dropped a few pounds, which is to be expected given the purge you have to put your GI system through. But in the days following the procedure, my weight creeped back up – not only to where it had been but beyond. I could see no reason for this weight creep because my diet and fluid intake was exactly the same as it had been for months. Of course, I was not exercising as much as I did prior to mid-March, but again, the activity had decreased 3 whole months ago. Why the sudden weight gain? Why did I feel like some of my clothes were bursting at the seams?
I began to fear that it was an issue with my heart failure. I know you are saying, geez Melanie, we all have gained weight during the time of Covid. But again, for months with the same diet and fluid intake and the same exercise, the weight had not been this high. I will admit that in the past few years, I had some temporary ups and downs on the scale, but they were always just that - temporary. But this weight creep seemed to go beyond temporary. I also knew from past experience circa 2014 that when you start to feel grumpy, dumpy and lumpy because you weigh more; and your clothes aren’t fitting like they should; and nothing has changed in your diet/fluid intake – well this could mean that the heart failure is worsening.
I could see some changes in my breathing capability while out on my early morning walks. I had been able for 3 months or so to walk up steep inclines with a mask on and in humid and increasingly hotter weather and just breathe through my nose. I wasn’t out of breath when I got to the top of each incline and I felt good. But now, I was starting to feel shortness of breath. It wasn’t that much more humid and I had become used to the mask and it was not restricting air intake. Again, increased shortness of breath can be a sign that the heart failure is worsening. I also felt fatigued. Was this fatigue because the heart failure had taken a turn, or was it just tired of being under house arrest with Covid and worrying about the these new symptoms? I had an echocardiogram during this period which would show any decline in my heart.
It was disconcerting enough that I mentioned it to my study coordinator when she called to schedule my cardiopulmonary exercise test (CPET). I found that I also had to do another Covid test before I could do the CPET. However, this hospital did not conduct the rapid Covid test the day of my procedure. Nope, I had to come in the week before to get the test done. Accordingly, I drove into the hospital 4 days ahead of time for the Covid test. This hospital complex is huge and has numerous parking garages. When I scheduled the Covid test, I was told to park in the blue garage adjacent to the testing location. I got there 25 minutes ahead of time, and then spent most of the extra time driving through the garage finding no unreserved spaces. I realized that my chances for finding a space, getting through the Covid security gauntlet and to my Covid test appointment on time were dim. I pulled into a reserved space for a minute and called the study coordinator. We decided I should try another garage and she said that the test people would not mind if I was late. But the Type A in me who was raised to be on time did mind!
I parked in a garage several buildings over from where I needed to be. The nice guard at the security desk pointed me in the right direction and told me to tell people I met I was looking for the blue garage. I walked for a bit and then asked a nice woman who was a nurse where the blue garage was. She said she wasn't sure where the blue garage was but we found a directional sign. She said she was walking that way and I could go with her. I was so frazzled but was grateful for her offer.
As we were walking I heard my name and I looked up and saw my heart failure doctor. I explained why I was there, and then I just started stammering and tears of frustration and fear appeared. I explained that something just hadn't felt right, and I had the echo and I hadn't heard back and I felt short of breath and gaining weight and I was concerned. He was just so kind. He listened patiently to this stream of anxious words. Then he told me he was going to the cath lab and he would get the echo when he was finished and look at it. Then he asked if I would be able to find the testing location. And the nice nurse, who had stayed with us, said that she was going over to help with the Covid testing and would make sure I got there. We had a nice chat and she ended up doing my Covid test.
The next morning my echo results were online and they showed my left ventricle was severely dilated (it was moderately dilated the last time) and that two valves had even more regurgitation. I was a little overwhelmed and I took a nap and when I woke up I felt like I was not getting enough air in. I have been told to advise the nurses of any concerns. After I was sitting up a while, I realized that my head was filled with congestion and thought perhaps that was what caused the breathing issue. But I still felt I should contact the nurses. I got in touch with one of my nurses and we went over all the symptoms that were bothering me in the last few weeks. I told her about the echo results. I also told her I wondered if I was retaining water and if they wanted to increase my diuretic.
She talked to my heart failure doctor. He didn't want to put me on any additional diuretic because the last right heart catheterization he performed showed the heart area was bone dry. I suspect that the diuretic compounded the dryness He also said that something in my left ventricle had actually decreased a bit in size. To me, this tends to establish for me that maybe the written summary for the echo results have some subjectivity or literary license. I have printed out results from this test and the last test and will have questions for my appointment next week! In the meantime, the doctor and nurse were going to have the doctor who monitored Monday's CPET examine me. I got through the test feeing fine and that's all I'm going to say because after having the echo results experience, I am not qualified to know whether I did well or not. I will learn more from the heart failure doctor next week.
The doctor who examined me asked lots of questions about my symptoms and what I had been noticing. I mentioned that I noticed all this began after the colonoscopy. He laughed and said "when in doubt, I always blame the gastroenterologist too." I laughed and said I was thinking more about some lingering impacts from the anesthesia. After examining me, he didn't see the need for more diuretic either. But he told me the two things that concerned him were my reports of feeling bloated in my abdomen and trouble breathing when in bed. If I felt those again, he said I needed to let them know. I looked at the study coordinator and said - Do I have a problem telling the folks here how I feel. She said no, Melanie will definitely tell us if there is a problem.
As I was doing the final examination, blood tests and CPET, I gained an appreciation watching these medical professionals in action. There are many new responsibilities placed on them now not only to do their job but to protect the patients and the medical environment from Covid germs.
I'll find out more next to week about what is up with my heart. I continue to chant my mantra: Be strong my heart, because our God loves us and has our backs. I continue to try to remember to breathe in serenity. Thanks be to God for ending my period of disorientation. I know that my during my time in the hospital both for the Covid test and the CPET, I encountered angels wearing lab coats and scrubs.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.