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.

Beth remained in the hospital a little longer than usual for a pregnancy simply because the doctors wanted to be sure that her blood pressure returned to normal (she had always had excellent blood pressure), and that there was no evidence that she had developed diabetes. We had lots of visitors over those few days. Everyone came to see Thalia,  officially known in my family as the Thanksgiving Baby. They finally released Beth and Thalia, under the orders that Beth was to take it easy for a while so that her body could recover, and that a visiting nurse would monitor her at home for a few weeks. That meant that I would have most of the baby duty. It wasn’t a problem because I was out on family leave for eight weeks.

We had already been discussing pediatricians and had decided to choose one near home rather than traveling to Boston. I do not really remember how I found Dr. Paula Heimberg, I only know I’m glad I did. To this day, she’s not only Thalia and Aaron’s pediatrician, we consider her a family friend. She works out of Garden City Pediatrics in Beverly. She’s the embodiment of how a doctor should be. I called her, and she scheduled an appointment with us before the baby was born. Because Beth was bedridden, I went alone and she spent an hour talking to me. We decided that she was the right choice for us, and were very happy to have her on board before the delivery.

Life with baby begins

Thalia’s room was all ready when we got home, and it was pretty cool. The room was bright and sunny, and the crib was decked out in colorful bedding. There were great mobiles hanging in her room. We had purchased a combination changing table/bureau and had moved a small pull out sofa into the room because Beth was going to breastfeed and I wanted her to have a comfortable spot. Of course, there was a small TV too since we’d be spending a significant amount of time there, particularly in the wee hours of the morning when Thalia Assuras was on.

Okay, I don’t want to say that Beth was OCD about Thalia, but she was. Thalia spent the first week in our room, but we were concerned about our two cats being able to jump into the bassinette so we moved her to her room because we had a cat tent over the crib. To say that they were curious was an understatement, but Ling Ling, our Maine Coon, was the most curious. She was only six months old when Thalia was born and had been the center of attention up to this point. In fact, Ling Ling took up residence at the very top of the cat tent so that she could see Thalia. We called her “watch kitty.”  Oh, yeah, did I mention that there was a pretty amazing camera attached to Thalia’s crib? Still, that wasn’t enough for Bethie. No sir!

We moved into the room with Thalia, spending nights on her floor in our sleeping bags. This didn’t go on for just a couple of weeks. It went on for just about three months. Beth sometimes reads more than she should. This time around, she got herself all wound up over SIDS. Now, I don’t want you to think I’m cavalier about SIDS. I am not. It is a real problem for newborns, and it was a frightening prospect for me as well because nobody really knew why it happened. However, being shaken awake every three hours to check if Thalia was still breathing took a bit of a toll over three months!

We had also decided that Thalia would not go into daycare until she turned six months. There was no real deep reason for this; Beth simply wanted the opportunity to bond with Thalia. So did I. However, we were both big believers that socialization was important. (We checked out many daycare settings, but settled on The Children’s Workshop in Waltham because it was close to where I worked.) I had met several mothers who were dead set against daycare, but in my mind they didn’t have very good reasons for their attitude. Basically, these women didn’t want their children to pick up germs and get sick. I wasn’t worried about germs and illness. Unfortunately, they are facts of life with children. Sooner or later, Thalia was going to be going to school and it was going to happen. My attitude was that the earlier the children are exposed to them, the better their defenses down the road when they do get to school.

I returned to work at Millipore after eight weeks, leaving Beth and Thalia alone during the day. Because Millipore had ‘flex’ hours, I was able  to change my hours so that I went in earlier than usual and returned home earlier than I normally would. This worked out really well. Thalia had lost interest in breast feeding after three or four months, and I took early morning feeding duty. I would sit in Thalia’s room on the sofa watching World News Now while I fed her.  Then, she’d immediately fall back to sleep and I’d leave for work around 4:30 a.m. Beth would handle the days and I took over when I came home, giving Beth an opportunity to nap. Beth still seemed to be suffering fatigue from the pregnancy. One day during my first week back to work, I came home to a very wierd scene.

I walked in the door and heard what I thought were pots and pans banging together. I figured something was going on in the kitchen (even though Beth was never really the cook in the family), but I was surprised to hear the banging coming from up in Thalia’s room. I walked in the door to find Thalia laying on her back on the changing table while Beth banged two pans above her head. I had to ask. “What the fuck are you doing?” Beth picked her head up with an utter look of terror on her face. “I’m trying to see if she’s deaf, Deb. I think she’s deaf.” I looked at her in amazement. “Beth, if she wasn’t deaf before you started this, she could very well be now!” I knew I had my work cut out for me. Bringing up baby was going to be a challenge.

Plenty of clouds on the horizon

I had promised Beth that she could return to school when Thalia was a few months old. She wanted to update her science degrees, so she enrolled in a cell biology class at the Harvard School of Public Health. It was an evening class, so I was on baby duty anyway. I remember those nights. Thalia and I would lay together on the bed and I’d place her on my stomach to sleep while I watched television. It was great. I’d talk to her and she’d smile like she knew what the hell I was saying. One day when I returned from work and Beth was getting ready for her class, she confessed that she had fallen down the three stairs to the landing while holding Thalia.  She was fine and the baby was fine. Beth had managed to keep hold of Thalia even while falling. She had landed on her back with the baby perfectly positioned on her stomach. We made jokes about what  klutz she was, but we would soon be in for a rude surprise.

A few weeks later, Beth came home from school and told me that she had difficulty completing her sentences in class because she seemed to run out of breath. She wasn’t feeling well and was still having problems with fatigue. Given her ill health during the pregnancy, I thought it would be prudent to check it out. We called her primary care doctor and made an appointment. We went in, she had an examination that included an EKG right in the office and things looked normal, at least from a cardiac perspective. We were relieved, and we returned to our lives.

However, the symptoms continued and Beth was feeling weaker and weaker. She didn’t even have the stamina to care for Thalia during the day anymore. So, we enrolled Thalia in daycare at The Children’s Workshop in Waltham two months earlier than we had originally planned. We remained insistent about Beth’s not feeling well and saw the doctor yet again. Nothing was resolved. According to her, Beth was fine and the exhaustion would eventually abate. Of course, part of the problem was the stigma of mental illness. Frankly, this particular primary care doctor had known Beth for many years. She knew of her past and her issues in the present. I could see what was happening: Because of these issues and because the illness is not immediately apparent, her doctor assumed the illness was “in her head.” The one thing I know for certain about Beth is that she is not a hypochondriac. She knows when her body is telling her something, and she absolutely knows and admits when something is “in her head.” I became adamant about looking further. She had not been back to school because the smallest physical effort on her part was exhausting her. On the third visit, Beth’s doctor scheduled an echocardiogram at the Beth Israel Hospital. Of course, her doctor was confident this would prove she was just fine.

The other shoe drops

Within a few days, we got the call. Beth’s doctor was stunned. The result of the echocardiogram was not good, and she had scheduled an appointment for us at Beth Israel with a Doctor Joe Cannon. She had given us some basic information, but I truly believe she knew she had blown it and she was just too upset to tell us how serious it was. Dr. Cannon, on the other hand, had no problem doing that. While he didn’t have much in the way of bedside manner, he told us straight out that Beth appeared to have viral cardiomyopathy and congestive heart failure (CHF). Her ejection fraction was at 15 (normal is in the 55-65 range), accounting for her fatigue and shortness of breath. The prognosis was not good, and Dr. Cannon offered her the heart transplant list.

This news was devastating. We had a baby at home that was less than six months old, and now we had a very uncertain future ahead of us. I was going to have to balance taking care of Thalia with taking care of Beth. I admit I had no fucking idea how I was going to get through it. I only knew that Beth was emotionally falling apart over it, and that I had to let that happen as hard as it was for me to watch. I would have been the same way had it been me. The one thing in Beth’s favor is that she’s a fighter. That’s how she managed to survive her ugly and violent home life. After the appropriate amount of grieving, and after deciding that Beth and Dr. Cannon were not a good fit (mostly because he was a pompous asshole), we decided to get a second opinion.

Welcome to my world, such as it is. I didn’t start this blog because I’m famous or I’m going to be famous. If I haven’t achieved that in 55 years, it’s unlikely that I will now.  I started this blog because people have encouraged me to do so. My sister says, “You can’t make this stuff up, Deb.” So here I am.

You know, I’ve hit bad patches in my life before. But this latest one has been hanging around since about 2002. My mother would call that a “doozie.” I think that’s more than a “bad patch.” Am I working on a bad life here? I mean, of course, I’m going to get into the events of 2002 and beyond, but right here today I’m looking at my significant other more than likely going into a psychiatric institution for a short-term stay and my children (ages 12 and eight) having to come to terms with it. That’s just the beginning.

I’m also willing to concede that the economic downturn certainly has the upper hand in my household and I absolutely hate deciding between the electric bill and food. I’ve got more than thirty years of experience in advertising and public relations, but I’ m slogging coffee to the entitled masses that shoehorn their way into Starbucks. Worst of all, I have been awaiting the first decent tax return I’ve had in years and just found out that the IRS is about to stick it up my…well, anyway, I think I’ve been born under a bad sign.

Stick around. This is only the beginning. The future looks messed up enough, but wait until you take a look in the rear-view mirror of this vehicle!