Memorial Day weekend, 2018. My youngest Adelyn had just laid down for an afternoon nap, while my husband and older two children were out of the house for a couple of hours, leaving me alone with my thoughts.
Just three short weeks earlier, I had a disappointing occurrence of shortness of breath that I had never had before, less than 6 weeks after my last heart ablation that cured my arrhythmia. The new symptoms had still not gone away. In fact, they were a daily problem, fluid retention for which I needed to take a new medication called a diuretic, otherwise the fluid in my belly would become so great that I couldn’t even sleep at night even if I used two or three pillows. And though I hadn’t had a full work-up that I would later have at Mayo Clinic, my electrophysiologist (a heart doctor who specializes in taking care of heart rhythm issues and pacemakers) had already mentioned what was likely going on given my symptoms and timing after the heart ablation. It was constrictive pericarditis.
Constrictive pericarditis was a type of heart failure where the outer layer of the heart restricts the ability of the heart ventricles to expand prior to ejecting blood with each beat, which caused my heart to fall behind in its ability to effectively move the fluid in my body. The excess fluid backed up into my abdomen and sometimes into my lower body causing swollen legs and feet and resulted in even worse shortness of breath even at rest. The more that I did, the more fluid retention I would get. Only rest and the diuretics could help keep the fluid under control by causing my kidneys to process the excess fluid. Most types of heart failure are permanent and have no cure. But thankfully this type did have a cure, a massive open-heart surgery called a pericardiectomy, where the outer layer of the heart called the pericardium is removed, thus relieving the heart failure. But at this point I was still a few months away from that, as I didn’t even have an appointment at Mayo Clinic at the time.
I used Addy’s nap time to do some reading. I had already read about the symptoms and testing and treatment for constrictive pericarditis. I had learned that it was a rare problem, so the number of research articles is relatively small. There was a case study linking constrictive pericarditis to the special type of heart ablation I had undergone in December of 2017, where my electrophysiologist had ablated not only the inside of the heart but also the outside of the SA node to treat my inappropriate sinus tachycardia. To safely ablate the area that required treatment on my SA node, there was a special technique using a balloon blown up to create space between the area that needed ablating with high frequency energy that was right on top of my phrenic nerve. Ablating the nerve could damage the nerve for life, greatly impacting my ability to breathe. So by entering the pericardial space around the heart and using the balloon technique, this was the safest way to protect my phrenic nerve while being able to effectively ablate the part of the SA node that was causing my arrhythmia.
But on this date, I moved beyond the basics of the issue to study my prognosis. The articles I read divided the prognosis based on the reason for which patients required the pericardiectomy. If it was due to chest radiation from cancer treatments, the prognosis for those patients was fairly dismal. Doing the pericardiectomy only gave them a couple of more years, if that. For the group of patients I was in, those who required the pericardiectomy due to heart surgery or procedures, the life expectancy was a 50% chance of living 5 years. But why? This didn’t make sense to me. If constrictive pericarditis was the only curable form of heart failure, and if I received the pericardiectomy to treat it, why was the prognosis so bad? If the constriction problem was cured by the pericardiectomy, why would this further impact the patient to the point of 50% of these patients not living past 5 years? I read on. It was suggested that maybe it was patients who had other heart conditions like coronary artery disease requiring bypass surgery, or other co-morbidities. Maybe they were older than me, but then when I looked at the age range of the patients in the study, they looked similar to mine. I read several articles, but I still couldn’t get an explanation. Even researchers were drawing a blank.
This was very stark news to me at the time. I hadn’t even had my first symptom of this problem for more than 3 weeks, and now I had a 50% chance of dying even if I received the gold standard treatment? This news crushed me. I had such high hopes of returning to a more normal life after battling the heart arrhythmia that came on 5 years earlier during my last pregnancy. It had altered my life, made working out impossible, limited my ability to do anything with the kids that was physical in nature, and as it continued to worsen, it exhausted me, relegating me to the couch at the end of each day. Not to mention the transient ischemic attacks (TIAs) and mild stroke that came along shortly after the arrhythmia started. This too had been life changing, as I still had residual from the mild stroke that ended my marathon and any long-distance running ability for life. After the heart ablations I had just had, and having begun anti-coagulants to prevent any further TIAs, even though I had a pacemaker as a souvenir to make all of this happen, I had thought I was on the cusp of regaining the life I once lived, mostly unencumbered by physical limitations of the past. It’s why I pursued the ablation, so I could live and work a normal life. So I could be a normal mom, active with her kids on the playground, park, and basketball court.
But now these articles, this prognosis… even if I got the pericardiectomy to cure the constrictive pericarditis, I only had a 50% chance of living 5 years?!! The thought took my breath away. Tears welled up in the corner of my eyes. I walked upstairs to Addy’s bedroom. She was sleeping soundly, her chubby porcelain cheeks angelic against her pillow, a picture of innocence at just four and a half. I did the math in my head. Five years would not even get her to 10 years old. My heart dropped. She would remember me at least. But would that make it worse? To lose your mom at such a young age. No! I just could not do this to my daughter. I turned and escaped to my bedroom, burying my head and screaming “NO!” into my pillow. Is there a greater pain than knowing you as a mother will be responsible for causing your child such deep pain? And all because I wanted to be able to be a better mom, more present, more able, more everything- it was the entire reason I got the heart ablation. My condition had been deteriorating to the point I would no longer be able to work. Not doing the ablation would have not been a rational choice. But never had I expected this rare complication as a result.
Today is six and a half years from that tragic realization in my bedroom. And I’m still here. By here, I mean I’m still living and breathing on this earth. Unfortunately in LA, and not with my children in Wisconsin. And still under great physical duress and requiring a double lung transplant. But by the grace of God I’m still here. While my physical state is extremely limited, and the road ahead is uphill and long, I beat the odds of living five years after a constrictive pericarditis diagnosis. And I plan to continue to beat those odds despite needing a double lung transplant, with God as my strength leading the way. This afternoon, I have big plans with my children, sharing Thanksgiving dinner, our traditional Turkey Bingo, apple cider and apple and pumpkin pie, and some Green Bay Packers football. Because we have learned that life is not about the numbers. It’s about taking advantage of the moments and memories we can make today. And then doing that again tomorrow, being present and grateful for every minute together (even if over FaceTime).
As we consider what we are thankful for today, I can say that while I have never wished for the difficulties of this life that I am living, I know that traversing these narrow, winding, and quite difficult roads have changed me forever. And not just me, but my children, also. It has made us more thoughtful of words, hugs, I love yous, and goodbyes. More grateful for time, any time together, especially in person, and every conversation as well. The irony of it all is that my relationship with each of my children is closer than ever, because we have been apart. Our bonds are stronger, because they have been tested by time and distance over and over. Our love is greater for God and each other, because we know from Who our blessings flow, and that but by the grace of God we live, here on this earth, together even if separated by thousands of miles at this moment in time. Our reliance on the faithfulness of God is constant; He answers our prayers and fills our needs in His perfect timing. So today on Thanksgiving and every day, our hearts are filled with gratitude for all that God has done and is continuing to do in our lives.
“Now unto Him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto Him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.” -Ephesians 3:20-21.
#gratitude #faith #inappropriatesinustachycardia #constrictivepericarditis #doctorhealthyself #newlungsnewlife #doublelungtransplant #lungtransplant
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.
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