Beverly's PPCM Journey

My name is Beverly and I am a heart failure survivor. I am married and have lived in New Hampshire since 1979. I am the parent of 4 children born between 1975 and 1985. 

I was diagnosed with PPCM in 1985, 4 months after the birth of my 4th child. This is him in the picture with me. Just prior to his birth I was found to have ventricular tachycardia and started on anti-arrhythmic medication about 2 weeks after his birth. This required a short hospital stay to make sure the medication was working and there were no adverse effects. I was able to keep my son with me and care for him while in the hospital. The cardiologist told us that generally these things (the v-tach) don't happen on their own. They are generally a trumpet that something else is coming and to be aware of shortness of breath and palpitations. That happened at 4 months postpartum. I had a Holter monitor and was called in for an echo. I watched the tech go from a guy doing his job to a very concerned tech: "you aren't going home are you? You have a doctor's appointment after this?" which he repeated over and over. I could tell from the EKG part that something was very wrong. After the doctor's appointment I was sent straight to the hospital. I had some CHF (congestive heart failure) going on and was in the hospital for 10 days while they fiddled with meds. I went home for 5 days, didn't react well to the medicines, and then went back in the hospital for 5 more days. I ended up on Norpace and something else I can't remember, plus digoxin. My EF settled in at 40%. My doctor told me I could live a normal life with that EF. My only restrictions were no more babies and no training for a marathon (like THAT was on my wish list! NOT). Those few weeks were very hard on my family. My husband arranged with the school bus driver to pick up the oldest two (ages almost 10 and 7 ½) during the high school route allowing them to sit in the front row with her young children until it was time to drop them at the elementary school. Our three-year-old went to her grandparents and the baby went to his aunt and uncle's. His four cousins certainly enjoyed playing mommy for those weeks.

The first 6 months post diagnosis were the hardest. Grocery shopping for me prior to diagnosis included a 3-year-old and an infant in one cart and groceries for a family of 6 in the second; therefore, grocery shopping with heart failure was not allowed. I wasn't allowed to carry my baby, so I borrowed an umbrella stroller to wheel him from the bedroom to the living room. My husband was already working two jobs, so he did the shopping at the only grocery store that was open all night.   After it was determined that I was stable, things got easier. I stayed at home for a few years and began working full-time when my son was in the third grade. About 8-10 years after my diagnosis, research showed that anti-arrhythmic medications were contraindicated for people with heart failure, so my cardiologist took me off them. He did not add any medications at that time. Whether it was because I was stable and doing well or because there was nothing to use, I am not sure. So, for about 5-7 years I wasn't on any heart medication.

My EF stayed at 40% for approximately 15 years from diagnosis, then dropped to 25% for no apparent reason. At that point my doctor added Metoprolol XL (Beta blocker) and Benazepril (Ace inhibitor). I continued to work full-time for a few more years but was becoming increasingly tired at the end of the week. At some point I was able to reduce my workload to 30 hours a week. In 2013 it became obvious that something was changing again cardiac wise. My doctor started me on Spironolactone and I started weighing myself every day and watching my salt intake. In May 2014 I had a major episode of CHF and was hospitalized for a week. At that time Lasix and a potassium supplement were added to my medication regimen. My EF dropped to 20% and the doctors I saw in the hospital started talking transplant. My own cardiologist referred me to a heart failure specialist in Boston. After a work up, he informed me that I was not ill enough to be on a transplant list. We discussed the various treatments available, including medications and LVAD. He also recommended that I immediately reduce my work load to 20 hours, while at the same time developing a strategic plan for retirement. At that time the specialist added Entresto, removing the Losartan (Earlier that year benazepril was replaced with Losartan because I had developed a dry cough on the Ace inhibitor). After another overnight hospitalization that same year for CHF, I was switched from Lasix to Torsemide and my weight is now much more stable. 

Because of the particular work I did, I was able to drop to 20 hours and within two years was completely retired. Currently, I definitely feel the low EF, which has bounced back to 25-30%. I have an ICD (Implantable cardioverter-defibrillator), am on a low salt diet and need to manage my activity level. I do visit my elderly parents 2x a month, helping them out. I grocery shop and do laundry assisted by my husband, by bringing the groceries in and carrying laundry upstairs. I walk with a friend. We square dance, but I can't grocery shop and square dance on the same day. When I get tired during a dance, I sit out a set or two. Some days I need to lay low and take it easy. I have also learned that I have to be extremely aware of the amount of sodium in my food as I am very sensitive to it.

I feel very fortunate to have been on a cardiologist's radar back in 1985, so that when the actual PPCM appeared, I received good treatment immediately. I try to move beyond my heart failure but am reminded periodically that there is a reason I had to retire early. My husband and I took a cross country trip over the summer and I had three serious episodes of ventricular tachycardia which landed me in the hospital. My EF also took a hit, being at 15% for a while. Thankfully I/we weathered that storm and my EF has bounced back to 25-30%. Unfortunately, this disease is never far away. Thankfully I am still as active as I can be and have an excellent support system.

There is a lot of fear and anxiety when one has a chronic condition. I thank my God every day for the way He has helped me through this. When I first came home from the hospital in 1985 I was afraid to go to sleep at night. God gave me Psalm 4:8, that says “I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.” All through this journey He has walked with my family, giving us strength and peace. When my EF dropped to 25% and I was able to keep working, my cardiologist told me that he didn't know how I could do what I did. He said that most people with my profile were home on disability. I give all glory to God, for it is He who has allowed me to do this. And now that I am not able to work, He provides strength for this chapter as well. I know that whatever the future holds, my Savior and Lord will be with me and that gives me confidence to continue on in this journey.