This is a companion piece to an article about parenting though a major illness. You can read it here . Most recent update on my journey with CHF is here.
In February 2009 I got sick. I didn't think much about it -- a head cold and a cough. The head cold went away but the cough didn't. I treated it over-the-counter but it got worse. I couldn't sleep, I couldn't eat, I had difficulty walking up stairs so I went to the doctor. Bronchitis, here's some medicine (antibiotics, inhalers, the usual). Call if you don't feel better.
The next week I called; I'm not better.
More antibiotics, call if you don't get better. Three days later I called; I'm not better. I was getting about 1 - 2 hours of sleep a night since it was difficult to breathe laying down. I would sit on the couch and try to sleep sitting up. You should have a chest x-ray I was told, so I did. Pneumonia.
Finally, that makes sense.
Take more antibiotics, drink water to help with the congestion, rest. Three days later I called back; I'm not better. In fact, I think I'm getting worse. I can't walk across the room without needing to catch my breath. My feet are swollen and I can't sleep laying down.
We'd like to have you see a specialist. An appointment was scheduled for the following week.
On Thursday, March 12th Pat was taking Emma to school. I had only slept about an hour the night before and asked him to come home before driving to work so we could talk. In the 10 minutes he was gone, I went from bad to worse -- I couldn't talk, I couldn't breathe and I could barely walk. Pat rushed me to the hospital.
Once there I lost all control over my life. I was hooked up to monitors and machines. I remember telling Pat that we would be home by lunch and the ER nurse laughing at me telling me I wasn't going anywhere for a while.
Did I know that I had a Left Branch Bundle Block? (I did not and I wasn't even sure what it was -- it is an electrical disturbance in your heart).
Did I know that I was retaining fluid? Yes, since my shoes were too small.
Did you know that your ejection fraction (EF) was 15? What's an ejection fraction? Your ejection fraction is the amount of blood that your heart pumps out of the chamber on each heart beat. A normal healthy heart has an ef of 60. That means that on every heart beat 60% of the blood in your heart is ejected. I was only pumping at 15%, dangerously low.
Did I know that had I let my husband go to work, my family would have come home to a very dead or close to dead me? I didn't know that and I didn't ever want to know that.
Did I know that I was going to be staying with them for a few days? It turned out to be 8.
Echos, CAT scans, x-rays, blood work.
We think you had a heart attack. I hadn't.
We think you have a pulmonary embolism. I didn't.
Finally, they told me what I had: Congestive Heart Failure (CHF).
How did I get it?
How long have I had it?
What does it mean?
So many questions, so many decisions. First things first. A cardiac catherization. They send a camera into your heart through the femoral artery to look for obstructions, defects, and heart disease. Luckily for me everything was structurally sound and I had no underlying heart disease. My heart was enlarged and had enormous pressure built up. Why, they didn't know.
After draining 26 1/2 pounds of fluid build-up from my body and countless tubes of blood I was finally sent home. I had to have a visiting nurse and they came in and set-up a remote monitoring station at my house for blood pressure, oxygen saturation, and weight. Everyday at 8:30 the machine would greet me and I would be checked out. If there was a problem, the nurse would call me and then my doctor. This went on for a month.
I was seeing a cardiologist in Plymouth. He seemed to know his stuff well enough but I wasn't really that into him. He recommended that I see a cardiologist at Tufts who specializes in womens cardiac health. So I made an appointment and off I went. My EKG was still showing abnormal electrical activity and I was still tired all the time. That's when they told me what caused my CHF, a viral infection of the heart sometime in the past year. She said to come back in April for more tests.
Meanwhile, I had started cardiac rehab which involves low stress exercises designed to help rebuild stamina that was lost due to my illness. I threw myself into rehab. I don't like to lose and I looked at this as a battle. I went back to Tufts in April expecting good news. I felt better, I looked better, I had gone back to work part-time. Things were going really well. Then I had my echo.
No change. My heart was still enlarged and the electrical activity was still really erratic. Most notably, my EF was still only 15. She recommended surgery to have an internal defibrillator (IED) installed in the event that I went into "sudden catastophic cardiac arrest" because of the instability of my heart. I should call my cardiologist in Plymouth and set up a surgical consult. She wanted the IED installed within the next 2 weeks. I was crushed. I called Pat, crying. I made the appointment for the surgical consult and my doctor had to cancel it because of an emergency surgery he had to perform. I resumed reading and trying to understand what my life had been reduced to and I had a hard time believing that this was going to define the rest of my life.
I sent out the update email to my sisters, cousins, and friends telling them my status. Erin, my neice, had been talking to a cardiologist in NY and sent me a name for a second opinion -- Dr. Kenneth Baughman. I called his office and was able to make an appointment for mid-June. I put the surgery on hold until I could see him.
As Pat and I sat in the waiting room lost in our own thoughts, a man called my name. He introduced himself and said "Aileen's busy with another patient and I didn't see the sense in making you wait for her." He did all the nurse stuff: height, weight, etc. I was impressed and said to Pat "He must be a great guy to work for." After the most thorough cardiac exam and oral history ever, we sat and talked. He laid it all out for me: prognosis, treatment, life-choices, medication therapy, everything under the sun including, for the first time, the prospect of a heart transplant. He told me what I should ask my cardiologist and the tests I should make sure that he orders. After thanking him, he left and Aileen, the nurse practitioner, came in. She gave me a package of information about my illness and how to manage my health. I left his office that day with two things: optimism and a new cardiologist.
They set a battery of tests for me the following week: echo, stress, mri. They were able to schedule all the tests for the same day. It was, however, a day that he didn't see patients. But, since I lived a good distance from Brigham and Women's he would adapt to my schedule and see me that afternoon after all the tests so I didn't have to drive back to Boston again! Imagine that. I knew that I had hit the doctor lottery.
After a grueling day of testing, I met with Dr. Baughman. He kept us waiting 10 minutes, 20 minutes, 30 minutes. We were getting more and more nervous as we sat and waited. We could see him in his office on the comptuer. When he finally came in, he apologized. He asked me how I felt, which was great since I still had the valium in my system that I needed for the 1 hour long mri.
He went through all the tests. Some good news, finally. My heart had started to shrink! Woo Hoo! The electrical activity was still abnormal but had periods of normalcy! Woo Hoo! I was waiting for the magic number -- my EF. It was 40%. I had gone from 15 to 40 in 5 weeks... he had never seen anyone have that dramatic an increase, ever. We were ecstatic. That was when he explained why he was delayed. He was on the phone with the radiologist making him check and recheck the results. He told us that he said to the radiologist that if he, Dr. Baughman, told me that I was at 40 and if he, the radiologist, was wrong he would not be employed the next day.
In that instant, it all went away. The transplant, the implant, the fear and the uncertaintly. We could breathe again, we could plan again, we could resume our lives again. I was still sick and had a long road ahead of me but I was out of serious danger! He wanted to see me in August. We left his office and couldn't wait to get home to tell the kids.
When I saw him in August, I had another echo and was optimistic but figured I had already got the really good news the last time. Pat and the kids waited for me while I went to see him. He was so happy to see me. The results weren't in the computer yet so he called the radiologist and had him read them to him over the phone. He was taking notes and making small talk. Really leading me on and toying with me. He hung up the phone and said "What do you think it says?" I answered "If I knew that I wouldn't have to drive all the way to Boston to get an answer, now would I?" He laughed and laid it all out: my heart had returned to it's normal size, the electrical activity had restored itself to normal, and my EF, my magic number, was 50. Recall from three hours ago when you started reading this 60 is normal. I practically kissed him!
The last thing I said to him that day was "You are the most amazing doctor I have ever had. I was sick before I saw you and as soon as laid your hands on me I started getting better and I don't remember you doing anything at all!" He laughed and said it was his pleasure. As I was leaving he stopped me and said "Thank you, it's not very often that I get to give people good news, so don't mess this up."
It's been two years since that happened. I still have CHF, and always will. Right now it's really well managed. As I age, it will start to affect my health again but hopefully, I'll still be ahead of the game.
P.S.: I never saw Ken Baughman again; a senseless accident took him away. His family will have this awful hole in their lives forever. I hope they can take solace in the lives he saved and the time he was able to recover for his patients. People who came to him at their most vulnerable found dignity, understanding, and humor. Rest in Peace Ken, you've earned it. The world lost one of the good guys and it has been diminished with your passing.
