On September 15, I was moved from ICU to the step-down unit. I was eating solid foods again and I had been sitting up for several days. Still no walking. While I’m on the subject of the ICU, I cannot say enough about the care that Anna Jaques provides. The nurses are spectacular. They’ve got everything down and there’s no messing around. Besides all that, they are a lot of fun. Because I’m at the hospital a lot with Beth to care for her various chronic illnesses, I never fail to visit the ICU and say hi to everyone there. I felt like they were my family when my family couldn’t be there.That was important to me. I’m not used to being sick and I’m resistant to being an invalid. They were great.

I had one unexpected visit before I left ICU. A doctor I hadn’t seen before walked in and introduced himself as Dr. Tarkan. He looked at my chart and IV and then said, “You’ll probably never have to see me again. My specialty is nephrology and they called me in on the case because your kidneys were close to failing. You were lucky.” I felt like saying, “No shit, Sherlock.” I decided at the last minute that I didn’t know him well enough to joke like that. Besides, he looked a little less loose than some of the other doctors that visited me. I mean, let’s face it. Nephrology? How exciting can it be?

On the road back

It wasn’t much different in the step-down unit. The care there was equally spectacular and Beth and I got friendly with a whole bunch of new nurses. The nurses and aides still came in at the same time at night, woke me up, took my vitals and gave me medicine. I still had the central and arterial lines. But I was going to the bathroom on my own. The best thing was that I was now going to get physical therapy and be allowed to walk again (with a heart monitor, of course). I’ve got to say that I cannot believe how much I lost while I was sick. I was just so weak. It took me forever to do anything, and the first day I was allowed to walk,  making it down the hall and back simply exhausted me. A lot of my meds were now in pill form, and I was on a ton of stuff. I was also getting shots in my stomach every day, but I cannot remember what it was for. My inhaler had been switched to Atrovent. (Later, my primary care doctor would add a long-acting inhaler as well, Flovent.)

During the week I was in the step-down unit, the kids came up for dinner several times. The food was great. The menu was like a restaurant menu.  One of the nurses we’d gotten friendly with came down from ICU on her break and ate dinner with us one night so that she could meet Thalia and Aaron. It was a fun time. Beth was great. She would get the kids to school and come up to the hospital for a visit. Thalia had a key and would let herself in, then get Aaron off the bus. Beth would go home and feed them, then come back with both in tow. My sisters and my niece cooked a bunch of food for Beth so she wouldn’t have to worry about that portion of the program.

I had received permission to use my laptop. The hospital had free wireless Internet, so I got back to my political blogging on Turn-Left. I also began to divide up Beth’s photos into categories so that I could begin her photo blog when I returned home. I had plenty of time to work on this stuff now. Jim, the guy who runs hypocrisy.com (which Turn-Left is a part of) called to say that he didn’t want returning to political blogging to be a detriment to my health. I told him it was adversely affecting my health to keep my mouth shut, so it was better to go back to blogging. By the middle of the week, I was working on the stairs with the physical therapist, and with the assistance of a cane. At the end of the week, I lost the heart monitor.

Dr. Pourati had come to see me before I moved to the step-down unit.  He told me that he would be on vacation the week I moved, and that I’d probably be getting out at the end of the week. He gave me a card with his cell phone number written on it, and told me to call him if I had any questions or if problems came up while he was away. Dr. Pourati also told me that someone would come in and set up the visiting nurse program with me. Before he left, he set up a follow-up echo for me on the 23rd of September, and a follow up appointment with him on September 26. I finally had to break down and choose a primary care doctor. I had scheduled an appointment with her in October. Dr. Pourati wasn’t happy with that timing, so he had taken the liberty of  calling and changing the appointment for me, making it much sooner.

Getting sprung!

On Monday morning, September 22, Dr. Harris came into my room and told me he was surprised to see me still here. My last chest x-ray was clear, and they were ready to send me home. He said he would take care of all the paperwork and I would be able to leave after lunch. Dr. Harris told me to order breakfast, and then went off to take care of the details. I had just ordered breakfast and hung up the phone when this tall skinny doctor with white hair walked into my room. He stuck out his hand, “Miss Della Piana, I’m sure you don’t remember me.” I shook back. “I don’t remember a lot of things,” I replied. He told me that it was probably just as well I didn’t.

He then proceeded to tell me that he had been a doctor for a long time and a handful of patients made the hair on the back of his neck stand up. I was now added to his list. He said it was a miracle that I was walking out of the hospital at all, let alone as quickly as I was. He also said he wanted to come in and wish me the best of luck. I was honestly trying to downplay this miracle crap. I’m not comfortable with that. I think it’s because I don’t want to believe I came that close and I essentially was taken completely by surprise; I couldn’t see it coming. That it could happen again is scary. But I don’t let it rule me. I did change some stuff. Now, as soon as I catch anything, I go to my primary care doctor whether or not I have a temperature or am coughing. All of the doctors got together and decided that would be the best bet since I had none of the outward symptoms of pneumonia. I’ll go along with that one.

We had one last thing left to do before I left, and that was to remove the central line. I’ll tell you what. After going through the removal of that small line, I was certainly glad that I’d been out of it for being put on and removed from the vent. The nurse bandaged the open wound on my neck and then came in and gave me instructions for showering because she was absolutely sure that was the first thing I was going to do when I got home. (She was right, of course. I had been there since September 6.)

I walked out of Anna Jaques at about 3:15 p.m. on Monday, September 22. It was warm and sunny out. We had to stop and get some prescriptions, and I was definitely exhausted when I got home, but I was happy to be out. I showered right off the top, then I hung out with the kids for a while. There were lots of naps thrown in there.

Getting back to normal…whatever that is

The very next day, I went to Pentucket Medical Center for my first follow-up echocardiogram. I had gotten a pep talk from Dr. Pourati before I left the hospital. He told me that he waited to give me the echo until after I left the hospital so that I would not become depressed that my heart had not made much of a gain. He repeated again that it would be a three-month process, but that he did expect to see improvement with this echo. Finally, it was my turn. The very first thing that happened was that I recognized the technician as a Starbucks Walkers Brook customer. She told me that I frequently made her grande extra-hot chai. She worked at Pentucket and also at the Lahey Clinic. That’s why she was in the Reading area.

After we talked for a bit, she started the examination. I was just laying there looking at the screen and, let me tell you, I had no freakin’ idea what I was looking at. After a few minutes, she said to me, “Did you actually have a heart problem?” I was kind of shocked at the question, so I told her what had happened. Then, it was her turn to be shocked, so I asked her why she was shocked. She told me that my heart looked great, perfectly normal, and that my ejection fraction was a perfectly normal 65%. No heart abnormalities. No thickness. Nothing. She said, “You’d never even know you were sick.” It was unusual for a tech to talk to somebody like that, so I had no intention of saying anything to the doctor about our conversation when I finally saw him at the end of the week. I did tell Beth. All she said to me was, “You crazy son of a bitch. Figures.”

I saw Dr. Pourati  on Friday, September 26 and he basically told me the same thing the tecnician did. He then told me that I could return to work without hesitation. When I asked him if I had to start at fewer hours, he said, “No. You can go back to what you were doing before.” The last thing he asked me to do was go downstairs on the way out and have my blood drawn. They had never checked my cholesterol or run a lipid panel while I was in the hospital. He was sure that my heart attack was related to the septicemia and not a result of heart disease, but he wanted to close the loop on the information. I thought that would be a great idea since I hadn’t had routine blood work in about fifteen years. (Hell, I still can’t tell you what my blood type is.) I was concerned that it wasn’t a fasting test, but he wasn’t. I had not yet had lunch. It was after noon, and I had breakfast really early. He thought it would be fine the way it was.

He asked if the visiting nurses had been coming and I assured them they were. I told him they told me not to take my blood pressure and heart pills together because my blood pressure was pretty low when I did. He asked me how I felt when I took them together. Did I get dizzy or disoriented? I didn’t. He told me to go back to taking them together. There was no problem with that. He also told me that he would keep the visiting nurses coming for one more week, then cancel them. I would not need to be monitored any further.

I wanted to get back on the schedule at work as soon as possible, so I called Joy — my boss — as soon as I got in the car. The schedule for the week of September 29 was already done, so she put me on the schedule for the following week. I worked for the first time on Friday, October 10, just a little over a month after the whole disaster took place. That was about two months earlier than anyone had predicted. I also began cardiac rehab, so I managed my schedule around that.

There are a few lasting effects surrounding my near-death experience. Like, oh, if Beth can’t hear me snoring in the middle of the night she shakes me awake to see if I’m still alive. You know, stuff like that. And Aaron finally said that he doesn’t want me to get too tired because when “you got sick before you really freaked me out.” He had never said anything like that until about a week ago. I’ve pretty much put it behind me. It’s not that it doesn’t creep into my mind every once in a while. I’d be a liar if I said it doesn’t. I have to say, however, that I’m handling this much better than I ever believed I could. Now I just have to get past September 6.

A few people have asked me to write this post now. I’ve been avoiding it, but I cannot avoid it forever. It’s still a relatively new event in my life, but I feel like I’ve gotten past it to be quite honest. That’s not to say that there aren’t times of anxiety. There certainly are. However, I choose not to have it rule my life.

The term “one step from the slab” was coined by my niece’s husband Sergei. We used to use the term when we were younger to describe the old people in our family who were having birthdays. I’d ask something like, “Hey, how old is he going to be Sergei?” And Sergei would say, “I don’t know but he’s like one step from the slab.” Of course, now that I’m in my fifties and now that Sergei is about to be fifty, we no longer talk like that. Last year, at almost this time, I was one step from the slab.

Let me tell you something about myself: I am an insurance company’s dream. I’ve been paying health insurance premiums for years and have cost the companies virtually nothing.  Up until last year, I’ve had a total of 11 prescriptions over an entire adult lifetime. In essence, I had no real medical history until last year. Sure. I have allergies. I’ve had them for a long time. Usually Benadryl does the trick, but I cannot use it when I drive. I swear it induces coma. When it really bothers me, I usually get Allegra. It works and it doesn’t make me sleepy. A couple of years ago, my primary care doctor thought my allergies were becoming more respiratory and I began using an inhaler. Other than that, nothing new on the health front. I get a cold a year and it’s usually gone in a few days. I haven’t had the flu for a long time, and I’m pretty resistant to the stuff my kids bring home. It’s just the way it is. So, I went from no medical history to the edge of the earth in what seems to me to be one night.

September 6, 2008

The anniversary is coming up. I was working on Saturday, September 6, 2008. I remember that I felt okay, but I had been using my inhaler (Albuterol) more often than usual in the course of a day. That was about it. I felt like I had a sinus infection or sinus headache the day before. That’s not unusual if I have a bit of a cold. That’s where I usually feel it. However, it had cleared up. I certainly didn’t feel as though there was anything seriously wrong with me while I was at work. I was closing at Starbucks in Reading that night. I was supposed to be out at 9:30 p.m., then I had to turn around and be back at 6:30 a.m. the next morning for an opening. As it turns out, it slowed down during the course of the evening and I had the opportunity to leave early. I was grateful for that because I had a long ride  to Amesbury (about 32 miles one way). I noticed when I got to the car that I was winded.  I didn’t think much of it. I used my inhaler and headed home. The ride home was pretty uneventful.

I knew for the first time that something was wrong when I got home. I had a short walk from the car to the house, and I was having difficulty breathing when I got in the door. I used the inhaler again. By now, I had used the inhaler far more often that the recommended two puffs every four hours. I remember sitting down at the table and turning to Beth. “Is it possible I’m having a panic attack? I’m having a real tough time breathing.” It was after this that all hell broke loose, and my memory is spotty from here through the 9th of September. I will relate what I can remember.

At one point, I felt like the inhaler was working. I decided to go upstairs to the bedroom and watch television with my son, Aaron. We were laying on the bed together when my breathing became a problem again. I remember saying to Aaron, “A, go down and get your other mom. Tell her I can’t breathe.” I could not lay down. I got up. I was gasping for air. I walked out onto the landing and looked over the railing. Beth was there and I remember saying, “Beth dial 911.” Now, anybody  who knows me knows I do not ask anyone to dial 911. Ever. Beth knows it. She called 911 immediately, then she came upstairs. When she got up to our bedroom, I was apparently standing in front of the air conditioner trying to suck in air. I do not remember that. Memories get even spottier here.

I remember hearing the ambulance. I do not remember the EMTs or how they treated me. I remember being carried down the stairs in a chair, and I remember seeing a policeman walk into my house. And, oddly, I remember thinking, “What the fuck is he doing in my house. Cops do not come in unless they are permitted.” That’s it. I do not remember the ride to Anna Jaques Hospital at all. I do not remember the emergency room at all. I only know what Beth has told me.

My oldest sister, Mamie, and her husband apparently arrived in record time from Medford, also more than thirty miles away. My sister Joanne had a shorter trip from Andover. I seriously do not remember the ER. I do not recall speaking to doctors. I do not recall doctors examining me. I don’t recall not being able to breathe, but apparently I asked to be put on a vent. Beth tells me that I threw her out of the ER repeatedly. I don’t doubt this. Beth tells me that she was in the middle of a panic attack and was apparenty vomiting in the other room. I know this vomit thing is a recurring phobia and we’ll get to that, but not tonight. Suffice it to say it doesn’t surprise me that I was tossing her out if she was in the yak mode.

I am also told that the two doctors taking care of me in the ER were promising Beth nothing. They told her they were literally taking it minute-by-minute, then hour-by-hour, and they’d go from there. They said I was very sick. They told her that, if I survived, I would probably be on the vent until at least Friday. So, what exactly did I have? Wouldn’t you like to know! (Just kidding.)

I apparently had pneumonia for a long period of time. However, I ran no fever and I was not coughing up anything. The only symptom I had was the need to use the inhaler more frequently over time. I didn’t make that connection. What really caused the problem was septicemia. I didn’t know much about this before it happened to me. There were two other things that happened as a result of the septicemia. I had a heart attack, and I now had stress cardiomyopathy. It was also determined that I have moderate to severe asthma. I was transferred to the ICU.

Pulling a Lazarus

When I woke up on Tuesday (yes, Tuesday) I had no idea where I was. I looked to the left and saw three pictures up on the wall. One was a picture of Medicine Buddha. On either side of him were pictures of Thalia and Aaron. There were two nurses there taking care of me.  I was no longer on the vent, but I still had an IV running with antibiotics being pumped in. I was not on solid foods and would not be for several days yet. I had a central catheter and an arterial catheter.

It was only then that I learned how close I had come. I didn’t even realize that it was Tuesday. I was being followed by two cardiologists (one was the ‘house’ cardiologist who worked with the actual cardiologist on my case), as well as a nephrologist and an infectious disease specialist. When I woke up, they told me that I had cardiomyopathy and that my ejection fraction was only 15%. However, Dr. Harris and Dr. Pourati believed that would remit over time. I do not remember them telling me that I had a heart attack. I found that out for the first time when I was released and went to the follow up appointment. I am sure they told me and I do not remember. It never came up in conversation between Beth and I, probably because she thought I knew. The prognosis was that I’d recover, but I would be out of work for at least three months. That was Dr. Pourati’s best estimate.

Beth called on Tuesday to ask if she could bring the kids up even though I was on a vent. They really wanted to visit. The nurse told her that she had a surprise, so she should bring the kids. She told Beth to call her from the waiting room and she’d meet them. When she walked in and saw me off the vent, she was ecstatic. We were talking and she pointed two things out to me. On the wall were two containers. One held a black liquid and it was three quarters full, the other a green liquid (there was significantly less here). She pointed to the green and told me that came out of my stomach. It was probably the remains of what I’d eaten that evening on my half. The other, the black liquid, had come from my lungs. Not only did I have pneumonia, but I had also harmed my lungs using the inhaler so much.

After Beth and the kids left, I couldn’t sleep. I had been out for so long there was no way I was sleeping right away. The nurse told me not to worry about that. I remember being up all night. I watched “The Omen.” Then came “Anaconda,” a movie I had never seen but one that was better than I ever thought it would be. After that, I was served a steady diet of WB 56 sitcoms until morning. Luckily, they had pretty good old movies on all day.

The one thing about ICU is that you never really sleep anyway. They were waking me up for medicine, then to check my vitals, and then to do chest x-rays. While I was in ICU, they brought the portable machine into my room. By the end of the week, I was sitting up for Beth’s visits. While I was up there, everything going on around me was very unnerving. I was stuck there, however, so there was no getting away from it. The woman in the very next room passed away. They could not save her. That was really difficult to watch. I caught glimpses of her family breaking down outside in the hall. I imagined what would have happened had I not been so lucky. By the time I moved to the step-down unit, three people had died in ICU.

I apologize for breaking here, but this definitely needs to be told in two parts.

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.