My wife battled a rare disease and won — Celebrating Heart Health Month
My wife Erin is the strongest person I’ve ever met. For the better part of the last 10 years, Erin has been fighting an extremely difficult battle that the majority of people never saw or understood the extent of the pain she endured. My wife suffered from a disorder called Hypertrophic Cardiomyopathy. It’s a heart condition, primarily hereditary, that most people have their entire lives. It’s rare that HCM is symptomatic.
I’ve known Erin almost 20 years and in that time, she and I have made a lifetime of great memories. She has always been up for an adventure or a fun night out. That’s why when she became ill, it was so hard to process that this condition was slowly sapping her of who she is, seemingly out of nowhere. As we looked back on it though, it wasn’t as out-of-the-blue as much as we may have thought.
Looking at Erin’s health issues, we could trace these symptoms for HCM all the way back to 2007. I remember on more than one occasion getting a phone call from her saying that she took herself to the emergency room because she was having trouble breathing. When the breathing issues happened, it seemingly came out of nowhere and it was always diagnosed as pneumonia.
There were two instances where I was with Erin where these “issues” flared up and as she would try to take deep, slow breaths, I could actually hear a gurgling sound coming from her lungs. There would be heavy coughing, shortness of breath, then sometimes within a few hours, she would be able to breathe again but the damage from those episodes would last for days afterwards.
We married in 2010 and for the first year and a half or so, there weren’t really any real issues or episodes that would’ve sent up a red flag. Then in May of 2012, all of that changed.
After a night out with friends, we went to bed as normal. Within an hour or so, I woke up to hear Erin coughing very hard and trying to get my attention. When I turned on the light, I saw my wife coughing into a handful of tissues. What I originally thought was mucus, turned out to be blood. We called the ambulance and she was rushed to the hospital.
Once at the hospital they ran test after test but couldn’t seem to find the issue. What was more upsetting was the fact that they couldn’t stop the bleeding that Erin kept coughing up. This went on for approximately three to four days. They tried many different treatments and they only finally got the bleeding to stop in her lungs with a chemotherapy treatment through an intravenous form.
Through the next couple of weeks, Erin went though a battery of tests, including a painful lung biopsy. It was concluded, at that time, that Erin had HCM and was also suffering from a disease known as Vasculitis. Vasculitis occurs if your immune system attacks the blood vessels in error.
Over the course of the next four years, Erin would receive treatment for Vasculitis, which included heavy doses of Prednisone and at any given time, an average of four other daily medications to combat other symptoms, and in some cases, to combat some of the effects of the other medications. All of these medications weren’t making her better, rather, the medications were just for daily maintenance and to suppress the Vasculitis.
Even with all the medicine, Erin had some episodes after the diagnosis where we had to rush her to the hospital for treatment. Her daily symptoms included severe exhaustion, and pains across her upper and lower body. Erin was battling all of this while working a full-time job. Weekends weren’t a time for relaxation and fun anymore, as much as they were for her to sleep the majority of them just to get through another week of work. There were times when we missed on nights out, family gatherings and parties, just because she was just too tired or too sick to go anywhere.
The move that proved to be a life-saver
In 2014, we made the decision to move from Monmouth to Middlesex County. The move was primarily done to provide Erin with a quicker commute to and from work. The move turned out to be the best thing we ever did.
When Erin had another serious episode, the first in our new home, we realized that we were going to have to rush her to an entirely new hospital. That hospital would wind up being Robert Wood Johnson University Hospital. We were introduced to a whole new medical team, which included following up with a new pulmonologist after being released from the hospital.
The new pulmonologist disagreed with the way the slides were read for Erin’s original lung biopsy in 2012. As we were told by the doctor, having not only one, but two diseases such as HCM and Vasculitis would be extremely rare. The doctor decided to explore it further and over the summer of 2016, wound up referring Erin to Cardiologist Dr. Ethan Rowin, at Morristown Medical Center. Dr. Rowin is also the Associate Director of the Hypertrophic Cardiomyopathy Center and the Director of Cardiac MRI Imaging at Tufts Medical Center.
After meeting with Dr. Rowin in Morristown, he ordered a few tests for Erin which finally showed what the problem truly was. It turned out that Erin was misdiagnosed with Vasculitis. She was not suffering from two rare diseases. Erin was indeed suffering from HCM and it was obstructive. The muscle in the heart that divides the two sides of her heart was too thick and open heart surgery would be necessary to fix the problem.
As it turned out, this type of surgery was only performed at three hospitals across the United States. One of those hospitals was TUFTS Medical Center in Boston , where Dr. Rowin is part of the HCM cardiology team. The surgery, which would be a Septal Myectomy to trim the heart muscle, would be performed by Surgeon Hassan Rastegar. While performing the Septal Myectomy, Dr. Rastegar would also repair the aortic and mitral valves which were damaged as a result of the HCM.
The surgery was took place this past Dec. 2016 and was a success. What I remember most about the day, which now seems mostly like a blur, was my cell phone ringing in the waiting room and when I answered, someone from the hospital telling me “Mr. Swendeman, the surgery went well and your wife’s heart is beating on its own again.” That one sentence was the biggest relief I’ll ever hear and all I could do upon hearing the news was cry tears of happiness that she was ok.
The road to recovery
My sister-in-laws and I were both in shock when, in less than 24 hours after having open heart surgery, we walked into Erin’s room and she was sitting up in a chair smiling at us! The nurses were getting her prepped to take her for a walk down the hall to get her moving. No rest for the weary!
Like a champ, she walked up and down the hall, taking small steps until she came back to her room. The most amazing picture, was the look on her face when she got back to the room. It was a look of both happiness and confusion. The reason for the look of confusion, was because prior to the surgery, even a walk as minimal as the one she just took, would tire her out and leave her completely out of breath. A day after the surgery and she already noticed the difference!
The last two months post-surgery have shown radical changes to my wife’s health. Even as Erin recovers, she has already done things that she would’ve never been able to do the past few years. She can go for long walks, she can walk up and down stairs, all without being completely exhausted afterwards. The difference is night and day.
We just recently met with Dr. Rowin for Erin’s two month check up and everything looks great! She doesn’t have another check up for a year and will now be starting cardiac rehab to build up her stamina again.
Celebrating heart health
It seemed very fitting that Erin’s two month checkup was right in the middle of Heart Health Month. Erin has every reason to celebrate her health after a long, arduous journey. Feb 28 is Rare Disease Day, which is even more of a reason to celebrate because her health problems were if nothing else, rare, as it seemed we would never find a true diagnosis to what her real issue was, more or less a surgery to correct the problem.
Cambridge BioMarketing in Boston has started a campaign to bring awareness to Rare Disease Day by designing a subway car in zebra stripes and plastering the inside with facts about rare diseases. The significance of the zebra stripes is that zebra is a slang term for a rare diagnosis.
I never gave much thought to celebrating a month or a specific day for a health issue. That has definitely changed after Erin’s battle with HCM. Modern medicine and some amazing doctors have given us every reason to celebrate. The need for even more research is crucial to find cures for many who are suffering.
My wife suffered for a long time, much of it in silence at times, but she never gave up the fight or hope. I am happy to say that not only is she a fighter, but now she’s also a winner too after beating her rare disease.