April 26: Was I really dying, or just being dramatic?

Over the past few months some people have expressed doubt that I was truly dying. There is an implication that while certainly sick, I was perhaps not actually dying. I don't know how you can hear that someone has had three open heart surgeries in less than three years and not realize they must have been dying. But, in all fairness, considering how incredibly healthy I've looked since the last surgery, it's (sort of) understandable. Certainly my story-telling can be dramatic, but anyone who has been around me for any amount of time knows that I've never needed to exaggerate regarding anything, professionally or personally. My life always HAS been that dramatic. But since this is a venue for my feelings as well as hoping to educate others, it makes sense to address it on the blog, along with some things that might be surprising/informative.

Going into heart failure in February 2004 is what lead to the diagnosis of congenital heart disease. It was treated with oral medications and things went back to what my normal had been. But then in July the ankle (same one) was badly sprained which lead to using crutches, causing my heart race. The ankle healed and the crutches were no longer needed, but in trying to resume activities it became obvious that the shortness of breath was much worse than before. By the beginning of August even small tasks made my breathing labored, the exhaustion from daily life was unbelievable, feeling horrible all the time. I knew what the next echo would show, knew it would mean heart surgery.

Taking a couple weeks to mentally prepare for that allowed me to be absolutely calm when it was done. I asked my boss (and, therefore, cardiologist) RL to confirm what was I already diagnosed on the echo myself, already knew. He was stunned, alternating between staring at me and then the screen, in total disbelief. It was absolutely horrible--this massive anterior leaflet of the mitral valve, the huge amount of blood regurgitating backwards. With each beat of my heart, more than 50% of the blood was going the wrong direction: back into my lungs, causing a severe increase in lung pressure while not enough blood moving forward to keep my blood pressure up.

While this let my bosses know the situation, it needed to be officially diagnosed by the cardiologists at Presbyterian, the hospital where the surgeon practiced. Before the stress echo on September 3, my comment to the M.A.s in the office was the wish that I would fail spectacularly because continuing to try and function was impossible anymore. After the test, the cardiologist confirmed that my heart failure was nearly critical, the lungs struggling to compensate for the backward flow of blood. It was so bad that the surgery was scheduled before leaving from the test: October 15. My cardiac cath and TEE were Sept 17th, but since it wasn't with exercise they didn't realize the full extent of the problem. Every week I felt worse, and I knew that I was dying. It wasn't exaggeration, it wasn't being hysterical, it was just something of complete certainty. Soon after, ME looked at me struggling up stairs in the hospital and said "You aren't going to make it to October 15 th. You'll never last until then." It didn't upset me, it was more of an affirmation than anything.

My appointment with the cardiologist, which was to have been my 'routine' six month follow-up, was October 4th. Since the surgery was now only 11 days away, it also served as the day for pre-admission tests and the first meeting with the heart surgeon.

The surgeon's appointment was the last appointment of the day. He told me that my echo and TEE (the one with more detail where they put the probe down the throat) had showed an abnormality that no one else seemed to have recognized. It was a more complex issue with the valve leaflets themselves, and meant that they were going to rupture open--soon. Rupturing open meant death, because it causes pulmonary edema, overwhelming the lungs with blood and fluid. It isn't predictable, could be the next hour, next day, next week, next month. He told me that as soon as this particular type of abnormality is discovered the patient should immediately go into surgery. But, he continued, since I was already in such severe heart failure and my lungs had gotten used to it (sort of) there would be several hours after the rupture happened, giving time to be transported to Presbyterian for emergency surgery. So, we decided to stick with the scheduled date, because everything was already arranged.

"How long do I have without the surgery?' I asked. He hedged.  I pushed.  I wanted to hear it, said out loud, by an expert. He looked down, couldn't meet my eyes, before replying "You probably have less than two months." I responded "So, we hope it doesn't rupture before October 15th or I'll see you sooner."

There was a strange comfort in knowing that, even to myself, I hadn't been exaggerating, hadn't been theatrical, wasn't being hysterical. It was something deep in my core: I knew I was dying. It was a quiet knowledge without question.

But, surprisingly, I didn't tell anyone what the surgeon said. Not until weeks, even months, after the surgery. Why? A lot of reasons.

People's reactions to the news that you are seriously ill can be bizarre. They want lots of details, ask lots of questions, often refuse to believe the severity. There were many times they even needed me to comfort them. If you talk to other patients you will hear this as well. No one wanted to accept how ill I was, that I was dying. I was going to have surgery and everything was going to be fine. Repeating the facts over and over is depressing and, when you can't breath, frankly exhausting. Not trying to explain and convince people of the hard truth was easier on me. Why deal with the hassle, other's disbelief, the cascade of emotions and fear? The "I told you so!" dance wouldn't be possible if I died during surgery. Not telling anyone was self-protective, on many different levels. And, for me, dying was an intensely personal issue, causing the 'inward turning' that I've mentioned at other times.

So, is that enough to say that I was really dying? Because from the time of confirmation by the surgeon, it was only 11 days until my heart would be fixed. Although I had known that things were worsening by the week, if not the day, and had been dealing with it since August.

But wait, there's more....

So, the horror that was the first surgery is over, months go by, and I'm still feeling wretched. The new cardiologist and the surgeon at Presbyterian are very dismissive of my continuing to complain of difficulty breathing and severe fatigue. They actually say in letters to ME "We don't believe that Laura's symptoms have anything to do with her heart...." Yup, it's in writing, multiple times.

And then Dr. Cohn of Harvard/Brigham Hospital came to lecture at Bryn Mawr, and immediately believed me when I spoke to him about my case. After looking at all the tests and reports from Presbyterian (which took MONTHS to get out of them) he called and told me to get to Boston ASAP. March 10, 2006, and they are putting me through the works: stress echo, TEE and a cardiac catheterization with exercise using a bicycle during the cath. The news is grim: the worst pressure increase the cath doc has ever seen. The measurement of the pressure in my lungs, called a pulmonary wedge pressure, is a little high at rest (13, with normal being 8-12), they aren't supposed to go up much with exertion, even with significant mitral valve disease. Maybe 14-15. Mine went to 34. I remember lying there crying, just saying over and over "No one would believe me. I knew something was wrong, but no one would believe me." Dr. Cohn announced a couple hours later: "Congratulations! You have functionally critical severe mitral stenosis!"

And then, the diagnosis was wrong, and the surgery in May was cancelled while everyone scrambled to figure out the problem. (RL, by the way, gets the credit for figuring out that the diagnosis was wrong) It was something rare and even worse than Dr. Cohn's initial pronouncement. That lead to my seeing Dr. Baughman, who informed me that I was critically ill and at risk for dying suddenly--like, any second suddenly. Without having known, I'd been deteriorating ever since the first surgery, with an abnormality waiting to kill me at any moment. It had been in my mind, but I'd talked myself out of it. Death had been hovering without my being certain, but now I was acutely aware of his presence.

Again, I downplayed it. Cousin/Aunt Beth's 50th wedding anniversary was already scheduled at the family vacation, she wouldn't be available until July. Dr. Cohn wasn't available until August. My thought process was that having lasted 20 months without knowing, I could certainly last another couple months being careful. So, again, I said very little, just stayed vague. The week of the family vacation there are almost no pictures of me--deliberately on my part. But in one lone picture it's obvious. It's a picture of my cousins and me on the couch--I'm hugely swollen with fluid and a color somewhere south of paste. Meanwhile, Dr. B was having fits about my not being in surgery already.

After the second surgery, Dr. Cohn admitted that my heart was much worse than he had expected, and also told me that this repair would probably not last my whole life, hopefully 10-15 years. Then the horrid thoracotomy with a difficult recovery. I just felt worse and worse, again gasping for air with minimal exertion. My local cardiologist told me there was no choice but a third surgery, although I convinced myself he was wrong. Then Dr. B told me on February 28th of 2007. Again, he wanted me in surgery immediately. But by that time I was in severe financial peril, was selling the house and renovating this one. Loss of my house would have been inevitable without taking the time to move. Dr. Cohn recognized this would affect me adversely going into another critical surgery.

My friend, and last EMS partner, Joanne came with me for the TEE and cardiac cath done in May. Again, things were much worse than they had expected. Now my wedge at rest was almost 40, going to 70 with just moving my arms with a little weight. My heart and lungs were struggling, failing more with every day. Dr. B came to talk to me in the recovery room. I'd told him that before going through a third surgery things needed to be black and white, unquestionably no other alternative. I had told Joanne what the only choice was, but she hadn't wanted to believe me. So, she asked him the question: What if the third surgery doesn't work? He hesitated, then said "The only treatment left would be a heart transplant." Even knowing the answer it was still horrific hearing it from the authority standing next to me in the white coat. It's something that you never think will be said to you, beyond any nightmare or imagining. The confirmation that, once again, I was dying.

Below is one of my journal entries in spring, 2007, which was the darkest, most horrible period of my life.

Everyone thinks they understand, thinks they know what it is like. But you don’t. Not until you live it. Not until you wonder, every hour of every day, how you are going to support yourself. Not until every day contains pain, the only issue is how much. Not until you wonder how much longer before you become even more compromised and look back on this time as “better days”. Not until you know that you are dying, it’s just a matter of when. Not until you look at dates in the future and wonder if you will still be alive when a movie gets released or to make plans for next Christmas. Not until you have to develop a façade to convince people how well you are doing, mostly to avoid their pity, the rehashing of all the horrid details. Not until you have to force yourself to show any concern for the stupid, inconsequential crap that other people get caught up in. Not until you are always identified as “that poor young woman with the heart problem”. Not until you know that every day of every month of every year for the rest of your life you will never be free of coping with a chronic, debilitating, frightening medical condition. Not until you think daily about your wish for a quick release instead of the long, slow agonizing spiral downwards that will leave you dependent on others, getting supported by the government, losing your dignity as you lose all your independence. No one else can understand it until you are living with it. Not until your identity is so wrapped up in your condition that even you are no longer sure where the disease stops and you as a person begin.

So, for the record, yes, I was dying. Technically, from August 2004 until July 2007. Three years doesn't seem like much, in retrospect. But you don't know that there will be a retrospect. That's the issue--I didn't know I was going to get better. Because after all the problems, the misdiagnosis, the repeated let-downs after critical surgeries and still struggling to breath, it was impossible to convince myself that 'the third time was the charm'. It's all starting to seem more and more like a nightmare now, but at the time it was reality. Every second of every hour of every day for three years. Not knowing what would happen. The specter of Death at any moment.

Only now, with time, is it possible to go back, try to understand what was going on in my head. To try and counsel others, let them know what to expect, tell them they aren't the only ones who feel these bizarre feelings. Because if I can help someone else, even if it is to help them die, then it gives purpose to what I went through. And, selfishly, that's what I need in order to try and make some sense of the whole horrible experience.

Hope this provided insights: to me, someone in your life, or even you. Laurie