By: Lydia Scott
I loved living in Apex, NC as 28-year-old married mom. It was such a pretty little country town with all the amenities of city life, plus the awesome standard of living characteristic of the Raleigh area. Granted, my then-husband, my two-year old daughter, and I had no close friends and no family in the area, but that was A-Okay by me. We enjoyed the anonymity. While I was a big girl (always had been, from kindergarten on), I was young and in good health so keeping up with my energetic toddler was fun. We decided to add to our family (you know, the quintessential “two kids, two pets and a house” American standard), and on May 28, 2000 my quiet, good-natured, laid-back baby boy was born.
The pregnancy wasn’t bad. I’d pretty much kept an annoying on-again off-again sinus infection the last half of my winter-to-spring pregnancy, but that was the only issue. The labor was a little touchy and much longer than it was with my daughter, but nothing crazy. Everything was business as usual. However, a couple of weeks after my son was born, I developed an annoying little cough, probably a carryover from the nagging sinus infection, I thought. I also noticed my post-delivery swelling was not improving, but hey, I was older and heavier (320lbs) than I was for the first pregnancy, so no big deal. But I brought it up to my OB-GYN at my follow up visit and she diagnosed it as bronchitis and gave me some medicine.
Another week or so went by and my cough was unchanged, except that now it was noticeably worse when I was lying down. I found using three or four pillows under my head and shoulders helped to ease the cough so I could sleep. I went back in to my OB-GYN and she decided the bronchitis was hanging on because my immune system was still low, so she prescribed Prednisone and had me stop nursing. She didn’t worry about it being pneumonia or anything serious because my symptoms didn’t indicate that and because I didn’t have “rales” (a characteristic crackling sound in the lungs made by excess fluid). Anyway, I was sad at the thought of ending nursing because my son loved it so, but I produced very little good quality milk anyway, so I complied, stopped nursing and started the steroid.
I’m Not Worried. Really.
By the first of July, I had to use seven pillows under my head and shoulders to be able to ease the cough enough to sleep. The cough bugged me when I was doing the laundry, or lifting my children. It was a shallow cough with no pain…no big deal. But catching my breath was a beast. It was like an elephant was sitting on my chest and I just…could…not…inhale.
My OB-GYN encouraged me to stick to the medication but said she wanted to see me the next week. That weekend I got zero sleep. A newborn, a toddler, a husband working all the time, no friends or family, and me sleepless. Why? Because no matter what position I took, even sitting upright in a dining chair, when I started to relax and doze I jerked up immediately, gasping for air like a fish out of water. I admit I was starting to get a little scared at this point. At 6:00 am on Monday, July 10, I rang the doctor on call at my OB-GYN’s office, told him what was happening, and at his insistence, went to the emergency room. It’s still hard to put into words without getting watery-eyed even 14 years later.
At the emergency room they ran the usual battery of tests, including a chest x-ray: a simple, basic, chest x-ray. I still wish I’d thought to ask my OB-GYN for one. The x-ray showed my heart was enlarged. But even that was not really a big deal, they said. It could be because I’d just had a baby, or because I was morbidly obese. Regardless, they wanted to do an echocardiogram, which is basically an ultrasound of your heart. It lets them see how the heart is moving, and measure how much blood it’s pumping in and out.
I’m Not Old Enough for That!
After a couple of hours, the cardiologist came to the ER bed to talk to my husband and me. She kindly yet firmly explained that the tests showed I was in congestive heart failure as a result of post-partum cardiomyopathy. I remember everything kind of slowing down, and all I could think was how I couldn’t have any kind of heart failure because you only get that when you get old and your heart gives out. My paternal grandfather died from congestive heart failure in his eighties. How did this happen? What does it mean? How did I get it? Will it go away? Am I going to live? What do I do? Why did this happen to me?
The cardiologist said that this was a 30/30/30 disease: about 30% totally recover quickly; 30% stay about the same or never reach a full recovery; 30% die. Some of these people will have had a heart transplant; some would not. I asked her if I got this because I was fat. She said it was impossible to know, but that studies had not shown that it was more prevalent among obese women; however, my weight could have been the “red flag” that put my heart over the edge.
Then she lowered the boom: my heart was an overstretched balloon functioning at 19% capacity, meaning it was only pumping out 19% of the blood that was coming into it. I couldn’t inhale because my lungs were full of the fluid that my weak heart couldn’t pump out. It was basically like drowning, slowly. My kidneys and my liver were stressed and weak, at best. I needed to be put on medications and admitted to the hospital because I was at high risk of aortic rupture, sudden cardiac death and heart attack.
That’s when the negotiating began. I told her it was impossible for me to stay in the hospital because my husband had to work to put food on the table and we had no close friends or local family to help care for my newborn son and toddler daughter. She stared at me for what seemed an eternity but was probably only a few seconds. I remember her sighing, looking down, and then looking directly in my eyes and saying that under the circumstances she would allow me to stay at home on very strict bed rest if I would give my word on my children’s lives to do exactly as she told me. I told her I would do so, but that it would have to be couch rest, because, again, I had a newborn and a toddler. I can almost hear her grumbling now, ha-ha! She agreed, I promised, and she wrote my discharge orders.
I was prescribed an extremely strong diuretic; a beta blocker; an ace inhibitor; a low sodium diet; and a low fluid diet. The low fluid diet means I could not have more than 48 ounces per day of anything that became liquid in your mouth. I thought this was odd, and asked why. The doctor said it was because my kidney function was weak and they needed to rest, so the less we put through them, the better. Okay, that made sense. Home I went, to start living a new way. But hey…I was living, and that was great!
How Do I Make This Work?
Over the next months, I lost about 30 pounds, most of it excess fluid from the “congestive” portion of the heart failure and I got below the 300 lb. mark. I was able to go back to a fairly normal diet too, thank goodness! I went to see my cardiologist weekly, then bi-monthly (the same one who cared for me in the ER). Part of my instructions were that I was not ever to lift more than five pounds above waist level; I was not to get too hot nor too cold; I was to keep a strict sleeping routine and get eight hours of sleep at the same time every night; I was to avoid bending over for more than a few seconds; I was to avoid all alcohol and many over the counter medications; I was to avoid stress as much as I could; I was to work hard to lose weight. I succeeded at most of these, except losing weight, and sometimes I lifted my babies higher than I was supposed to, albeit very carefully. But my daughter and son were so cuddly and sweet, how could I resist?
I learned how to use tricks to handle my motherly duties. It’s amazing what you can accomplish with an office chair with wheels and a rectangular laundry basket! The stroller was a huge help to me as well, because I could put my son to sleep in it for day-time naps instead of his crib, which required me lifting him in a way that was not good for my heart. I did my best to put both children down for naps at the same time, or at least for quiet time, so that I could lie down and rest too. We did a lot of things at or near floor level, which the kids actually loved! I learned how to stagger the heights I lifted and lowered them to, so as to reduce the pressure on my chest and thus on my heart walls. Yep, creativity definitely came in handy!
A Miracle Doctor!
So, how was my recovery during the second half of 2000? Unfortunately, it was not good. My blood pressure was plummeting on the ace inhibitor my doctor prescribed, often averaging around 85/55 (talk about seeing stars when you sit up!). She changed the strength until it couldn’t go any lower, then she tried every other current ace inhibitor on the active market. The ace inhibitor was the key drug in helping my heart get stronger, which in my case, because the heart walls had ballooned out and were so thin, was absolutely necessary. After four months of no success and my heart function still at 19%, she scheduled me at Duke Hospital for a cardiac transplant evaluation in February of 2001. It was obvious she was very worried about me. She had told me early on that if a woman was going to recover from this, it would usually happen in the first six months after diagnosis. That “golden window” was almost gone for me.
During this same time, she signed up for a cardiologists’ convention in New York, specifically to pick the brains of top cardiologists for a way to help me. (Did I mention I love this doctor? I wish they were all just like her!) She came back from the convention with a new tactic: the cardiologists there had told her to use an old ace inhibitor that wasn’t really in circulation anymore. It was considered inferior and old school. They said there’d been success with it when the new ace inhibitors weren’t being tolerated. “Capoten,” I believe was the generic name for this medication. She started me on the lowest dose and waited. After a couple of weeks with no “graying out” or stars and my blood pressure not going ridiculously low, we realized her efforts were successful. YAY!
In February, 2001, I went to Duke and had my scheduled transplant evaluation. I was terrified of this test, mainly because I knew that if I “passed” it, meaning I did qualify for a transplant, I still might not be able to have one because I was morbidly obese. Not to mention, all the huge risks that come with any transplant. The test was basically a review of your history, an EKG, and an echocardiogram kicked up a notch. When the results came back and they called me in to discuss them, I was so, so scared. I didn’t know if I was more terrified of having approval to have a transplant, or of being too obese to be considered.
As it turns out, I failed the test. That sounds bad, but it was the best possible news I could have ever dreamed of, because my heart was now functioning at 43%!!! I did not qualify for a heart transplant anymore. The old-fashioned ace inhibitor, combined with the other medications and lifestyle adjustment, had been doing their jobs!!! My cardiologist saved my life, because she gave a darn. About ME! I tell you, I’d never been so happy to fail a test in my life!!!
From there on, over the next few years and some non-cardiac surgeries, my heart function slowly increased to 50%, then made it to the 60% range. I experienced a bad episode with atrial fibrillation in 2008 and still have PVCs (premature ventricular contractions) every now then, although now that I’ve gotten much healthier and continue getting healthier (that’s another blog!), they are almost non-existent. I take no medications anymore.
And best of all, a day I thought would never come: in June 2013, my local cardiologist told me to never come back, and to go train for a marathon…I was finished being sick.
I cried. It was over, and life was just beginning.
I shared my story with you today in hopes that it will inspire you to listen to your body and your instincts, and to take care of the body you have. Make it the very best you can, because time and chance fall upon all of us. You might not be able to escape a disease, but a strong body can give you the tools to give the disease one heck of a fight! If you don’t fight for you, who will? It starts with each of us. Be proactive. Get the tests you’ve been putting off. Start the healthy eating regimen you keep talking about. Get moving…movement is like lifting weights for your heart. Make it strong!