I’m not sure how we came to this conclusion, but we decided to try a different facility for a second opinion. Our pediatrician suggested Dr. William Dec at the Mass General Hospital.  This one didn’t go well from the beginning.  We didn’t actually see Bill Dec, but we did have an appointment with his fellow (I’ve wracked my brain, but I cannot remember this guy’s name). He was a jerk, but his assistant was just plain dumb. After studying all of Beth’s test results and the massive file that had been sent before our appointment, he — this pinheaded wanna’ be — had come to the conclusion that Beth could resume her normal activity. We just looked at each other. She was winded just moving around the house. There was no way that was either possible or advisable.

I’m not exactly sure how things transpired with this handful of caregivers. I know that we decided to see how it would go before jumping off the bandwagon. What actually happened was that they enrolled Beth in a drug study without consent or without her filling out any kind of paperwork. The drug was Carvedilol (generic: Coreg), which I myself happen to be on right now. Back then, however, it was an experimental drug. I may not remember much about this event, but I do remember that we found out on a routine visit when a nurse mentioned the study and why Beth had to come in that day. That really set Beth off and I have to say that I don’t blame her. Nobody wants to be a guinea pig when living and dying is the issue. That was the end of our experience with the proteges of the supposedly venerable William Dec.

It was at this point that Beth’s primary caregiver repaired her reputation with us, albeit temporarily. She suggested that we see someone named Dr. Abelman (sorry, can’t remember his first name) at Beth Israel. He was considered the last word in cardiology, but he was close to retirement. It didn’t matter to us; we just wanted a second look. Her office made the appointment for us and we went. This experience was so different from our experience at MGH that it was unbelievable. First off, we weren’t dealing with some lackey who had no idea what the fuck he was talking about. That was encouraging right off the top. We went to see Dr. Abelman and that’s who we saw. He had already had access to Beth’s files since all of the tests had been done at BI, so his first priority was to examine her.  We liked much better the prognosis when we left his office.

He did not offer Beth the heart transplant list. Instead, he differed with the original diagnosis of viral cardiomyopathy. He told us that he firmly believed that Beth’s cardiac “event”  was directly related to her pregnancy. This was the difference: He went back and looked at everything she had gone through over her pregnancy. He didn’t stop at the echo that was run after the pregnancy was over. I do remember the good doctor’s words exactly, “I don’t believe this is viral cardiomyopathy. I believe this is perinatal cardiomyopathy and that it is already remitting, and that it will completely remit over time with the proper care.” Unfortunately, Dr. Abelman would not be the doctor to follow Beth as he confirmed that he was retiring. He told us that his colleague, Dr. Carol Waksmonski, would be his choice of cardiologists to work with Beth.

Because of Beth’s fragile emotional make-up (is that a gentle enough description???), getting her to trust anybody new is a battle. She really felt comfortable with Dr. Abelman almost immediately, however, and she was willing to give Carol Waksmonski a shot. It was one of the best decisions she ever made in her life.

Dr. Carol Waskmonski to the rescue

I’m not going to paint Dr. Waksmonski as a miracle worker, but the one thing that stood out was that she could handle Beth’s illogical emotional forays into fear. Perhaps her biggest fear is of being abandoned. This is a constant underlying theme of Beth’s issues, and it’s no doubt due to the fact that her mother basically left her at home to be abused. It was abandonment of the worst kind. Dr. Wasksmonski knew Beth’s story going in because that’s my job. I make sure every health care provider that Beth will be interacting with on a regular basis understands exactly what’s going on in Beth’s head. The one ability Dr. Waskmonski had that I didn’t see in any of Beth’s other providers was the knowledge of how far to push back at Beth. She did with some success.

The focus of Beth’s care turned to perinatal cardiomyopathy. I believe that Beth came off the Carvedilol.  She had tachycardia, so she needed a medication for that. That’s when she began taking Lopressor (not generic back then, but now is — metoprolol). We moved from heart transplant to diet and exercise. I remember one of the most nerve wracking things I had to do throughout this process was check Beth’s pulse with a stop watch. She could not go above a specified level (although, to be honest, I forget what the number was now).

Beth, after a period of despair, went at it with her usual amount of determination. Her workouts started at 30 minutes, wearing a manditory heart monitor. By the time she was done over the two-year recovery period, she would be at the gym for nearly three hours a day, four days a week. In between, there were monthly visits to Dr. Wasksmonski and serial echocardiograms to track her heart’s recovery.  When Beth was diagnosed at the Beth Israel about four or five months after Thalia was born, her ejection fraction was 15%. At her most recent check-up, just about two months ago, it was 55%, or dead-on normal.

Beth’s achievement was huge. Two years later she was declared healthy, and Carol Waskmonski remained Beth’s cardiologist right on through Aaron’s birth and early life. (Today, Carol Wasksmonski is at Columbia in New York and she and Beth still keep in touch via email.) There were, however, losses in other ways. Somehow, Beth had managed to keep herself from bonding with Thalia early on because she believed she would not be around for long. I think that was a decision made in haste –a ’self-preservation’ effort that hurt rather than helped. Because of this, Thalia and I developed a very special relationship. Beth eventually got there, but it took a lot of work and happened much later. For sure, Beth missed a lot that I had the pleasure to be part of.

To Thalia’s credit, she “gets it.” This is perhaps because she’s been exposed to a lot of  what I like to call “adult stuff” a lot sooner than most kids. I feel badly about that, but I tried to keep her from it as best I could. There are just times when there’s no hiding some things no matter how hard you try. I’ve been in that situation a lot, and it never gets any easier.

Back from a death sentence

Beth would be totally healthy by 1999-2000. Did I mention that she has a short memory? By 2000 she was ready to get pregnant again, to my dismay. She wasn’t kidding either.  Ah, but that is a different post for a different day! Stay tuned for the next episode of WTF is with my life.