To sue, or not to sue

"Time would tell that they had to know what the problem was; but they weren’t sayin’. So till the truth be told, they’d make me out to be crazy -- just in case I did sue."

Dr. V, a cardiologist practicing in partnership with Dr. M. in Cumberland (and my cardiologist for many years; in fact, Dr. V is the one who connected me and my family with Dr. Charles Hufnagel, my surgeon at Georgetown University Hospital), instructed me to call the Emergency Room the next time I lost consciousness getting out of bed in the morning.

So I did. What they were supposed to do for me, I don’t know. The plan didn’t work, anyway. I passed out, so I called the E.R.; then I passed out again. When I regained consciousness, my head was on the bed; the phone headset was in my hand, at my ear; and the line was dead. The only thing someone on the other end might have heard was me breathing.

When I finally managed to get out of bed that morning, I got myself together and drove to the E.R. It was a Friday. Someone admitted me to the hospital. And of course, Dr. M was my attending physician.

I lay there three days. During that time, someone mentioned that we could try turning up the output on the pacer to alleviate the problem. I needed to get back to work on Monday. So by Sunday afternoon, I was ready to demand action.

I asked to see Dr. M. He wouldn’t respond. So I used the telephone in my room to call the hospital switchboard to have him paged. When he came on the line, I told him to get up to my room immediately and set up the output on the pacer, or I would call my lawyer. He wasted no time.

I still chuckle as I recall him stomping into my room and flopping himself down, with a thud, onto the seat of my bedside potty chair. What a fool.

He did set up the output. And then, at my insistence, he released me from the hospital. 

I had no further problems passing out, though I continued to be very tired, lethargic, symptomatic of the pacer’s malfunctioning, and saddened that this situation was disrupting my life so drastically; and no one would help me.

Silly me: I continued to go to the pacer clinic at Sacred Heart Hospital, every six months, as they required -- until the Medtronic representative set my output back.

This guy would interrogate the pacer, and then he was supposed to tell me what he found. So he tinkered around this day; I asked him what he found. He told me the output was set too high, so he set it back.

I said, “You did what?” He told me he set the output back. I said, “You don’t know what I went through to get the output set up.” I continued, “When I walk out of here, and get behind the wheel of my car, and drive down Braddock Road (which is a steep descent), if I pass out and wreck, then you can sit up here and say, ‘Oh, whoops!’ but I’m the one who would have to spend the rest of my life in a nursing home. You are going to set that output back up, now.”

He did. That was my last visit to the pacer clinic.

I did try to talk with that rep later, though, because I wanted to ask him some questions about what he found when he interrogated my pacer. My family doctor at the time, adversarial as he turned out to be, kindly arranged a meeting between the rep and me, at his office. When I got there, however, I received the message from Medtronic that the only way the company could communicate with me would be through their legal department. “Oh, great,” I thought. “They want me to sue them.”

I really didn’t want to sue anyone. I just wanted someone to face and fix the problem with my malfunctioning pacemaker.

I tried meeting with the hospital staff. Dr. M was there, along with the director of the pacer clinic, a representative from administration, and more. I don’t remember who all was there, but the room was full.

I wanted to know more about why the clinic existed, its mission and goals, how it intended to help people. The whole concept had been counterproductive for me. For years, I had gone to the clinic every six months. More than once, I had to walk out and go back to work, because they wouldn’t honor their scheduled appointments; and I couldn’t stay any longer.

And then, the Medtronic rep endangered my life and well-being by taking the liberty to set my pacer output down. Luckily, I asked him that day what he did; and fortunately, he told me. And best for all of us, he complied when I told him to set the output back up.

Those types of inefficiencies are problematic; and those types of blunders are dangerous, I tried to impress upon the group. I wanted to know why I should continue to come to the pacer clinic; and why I should come every six months.

The clinic director said they scheduled appointments every six months “because that’s what Medicare allows.” That answer still strikes me as ridiculous. “But I’m not on Medicare,” I replied.

At some point in the meeting, she cried, and apologized for the situation. I really liked her; and I felt bad that the whole relationship had come to this impasse. She and her staff were hapless victims, as much as I, in this mess brought on by the ineptitude, covering up, and commiseration of the surgeon, the cardiologist and the pacer rep.

Time would tell that they had to know what the problem was; but they weren’t sayin’. So till the truth be told, they’d make me out to be crazy -- just in case I did sue.

Of course, in our meeting, Dr. M made a fool of himself. I don’t remember details of his asininities, but I remember the administration rep (Candy G.) making a point to tell me after the meeting that she believed the root of the conflict between him and me was “a cultural problem.” (He is a native of India; how his culture might have affected his outlook toward me I still don't know.) She implied that his view of me as a white woman colored his ability to interact with me effectively.

I said to her, “Then why don’t you fire him? If he has problems dealing with his patients, then why don’t you fire him?” He still practices in Cumberland, and at the new Western Maryland regional hospital. Hypothetically, many more people / women could lave been subject to his denials, ineptitude and abuse. If so, then they must have sought, as I did, solutions to the problems he perpetuated that were more practical than suing him.

The first doctor to call me 'crazy'

"He simply didn't care that my pacemaker malfunctioned...and he didn't like me persisting to find the problem and seek a solution."

It's almost other-worldly, recalling some of the medical messes I've been in. I was telling a friend the other night about the cardiologist (Dr. M, practicing in Cumberland, Maryland) who told me, in the early 1990s, "Nancy, there's nothing wrong with your heart. It's all in your head. You're crazy."

Dr. M was my cardiologist at the time -- 1985 to 1993 -- and I was pushing him to get to the bottom of my troubles with my pacemaker, which wasn't functioning properly. In fact, I'd been symptomatic since 1985, when the lead on my original pacer -- a Cordis brand implanted at Georgetown University Hospital in 1972 -- broke, and Dr. S P implanted a new Medtronic battery pack and leads at Sacred Heart Hospital in Cumberland.

Dr. M initially impressed me. When I was in the ICU, on a temporary pacer, in critical, unstable condition, awaiting surgery the next day, he seemed interested, knowledgeable, capable. However, time would prove that I would try far too hard for far too long to seek proficiency and professionalism from Dr. M. He simply didn't care that my pacemaker malfunctioned; he didn’t want to get to the bottom of it; and he didn't like me persisting to find the problem and seek a solution.

Finding problems meant placing fault, something Dr. M apparently didn't want to accept. Furthermore, the ability (or motivation?) to find solutions would prove impossible for those on the 'team' that included my none-too-swift family doctor, along with the hapless pacer clinic staff (the turmoil of the situation truly saddened the director) and the commiserating Medtronic representatives.

Dr. P did the first faulty implant in 1985. This pacemaker was a dual-chamber variable rate, my first of that type; my previous pacers were steady rate, set at 70 beats per minute. Dr. M decided to set the new pacer to reach a maximum activity rate of 110, with a resting rate of 60. However, with the leads not attached to my heart tissue, when the activity rate reached 110, then the pacer responded by dropping the rate immediately to the lowest level, 60 bpm.

In aerobics class, which I had done comfortably for years, suddenly now I had to stop and hang onto a windowsill, trying to catch my breath and stay on my feet. Neither did I have stamina anymore to do cross-country skiing, another activity I had enjoyed for years. Tiredness and lack of energy, problems previously resolved by my heart surgery in 1972, now became commonplace again. That sense of dragging all the time became depressing; I remember commenting to a friend that I couldn't be sure if the tiredness caused the depression, or if the depression caused the tiredness. It seemed a vicious cycle for me. Of course, now I know that depression was not the problem.

And of course, Dr. M found nothing wrong with the pacer; he insisted that the problem was in my head. So I pressed on, half believing him, and figuring that if something were wrong with this pacemaker, then the problem would go away when the next one were implanted.

In 1993, Dr. P implanted another new Medtronic pacer and new leads, because the old leads tested weak. So I thought, "Great. This new pacer should be the answer. Things will be better now." Not so. Soon, a new symptom arose: I was losing consciousness getting out of bed in the morning.

What a fiasco I had to deal with next.

 

Please don't call me crazy: I've lost my eyesight, not my mind.

"I believe my mind has sharpened because of my vision loss, as I’ve learned to use it more expansively in many ways."

When I began this blog in November 2007, I hoped to document and share the challenges of sudden and profound vision loss; however, I found moving on more interesting, and I just never made the time, nor had a reason, to put my experiences into written words -- until recently.

A distressing encounter with an old acquaintance in the supermarket prompted me to write a letter to him, to explain my situation, with hope that he might gain some understanding about my complex lifelong struggle that he clearly either didn't want to believe or couldn't believe, when faced with the stark reality of it in our chance meeting.

This is someone who has known me more than 30 years. He has been a supportive colleague. His wife is a retired teacher; she has known my mother. These are people with whom I've shared a mutual respect...I thought. My recent encounter with Jerry, though, left me wondering what went wrong in the supermarket, or what types of predispositions he had brought with him that day, to elicit his hostile response. As I explain in the letter, Jerry's exhibition of denial, projection and rejection is uncommon among regular folk, though those behaviors quite common among doctors -- but doctors see me as a threat;  Most doctors don't know what to do with me; they would rather not get involved;  and they just want me to go away. And I am all too happy to oblige. I really don't want to have anything to do with anyone who wants to be cruel to me because I'm defective or blind. But I didn't want to write Jerry off that way, and so I wrote to him.

After receiving my letter, Jerry did call me to apologize, though he could not explain his outbursts, when I asked him why he insisted in our encounter that there was "something wrong in (my) head." He justified that implication by telling me he was "surprised" to hear of my vision loss. He said his behaviors were not typical for him, and "something happened between us that shouldn't have." He made the excuse that his abrupt departure had to do with his wife being in the checkout lane and waiting for him to bring his credit cards. He also revealed that he currently faces treatment decisions in connection with a recent diagnosis of lymphoma; so fear or anxiety on his part could have played a role, I think -- though his behaviors, under any circumstances, remain offensive and unacceptable. I'm glad I challenged him on them.

Here is the letter, abridged:

June 17, 2013

Dear Jerry,

I want to apologize to you: Clearly, my explanation, when we chatted at (the supermarket) recently, about my vision loss and heart surgery, disconcerted you -- enough to bring you to conclude that I’m crazy, and then turn your back and walk away! I’m sorry that I offended you; I didn’t mean to. You asked me what I was looking for, when you saw me climbing the shelves, and I told you bluntly why I had to climb the shelf to check the price – not the answer you sought, and apparently not the best approach to explaining! I’m not sure how I could’ve done it better, but I wish I had. It bothers me that I upset you.

It was good to “see” you, and I appreciate your making yourself known to me. Because of the nature of my remaining vision, distinguishing faces is difficult, and I never could have recognized you if you hadn’t spoken....

A nurse asked me (once), “Don’t you ask, ‘Why me?’” My reply was, “No.” And I never have. This is my life, and I cherish it. I praise God every day for His many blessings, and I pray to bear the burdens He sends me with the grace they deserve. So far, thankfully, with His help, I’ve embraced my misfortunes beautifully -- though anxiety (out of control at one time and misdiagnosed, of course, and maltreated for years) does still plague me some. The knowledgeable psychologist who finally correctly diagnosed me told me, “The only thing that’s wrong with you is you worry…and you’ve got a lot to worry about.”

Jerry, your hostile reaction is not unique...though (it) used to be rare outside the medical world. Most doctors still come unglued, truly abusive, when faced with the facts of my lifelong history: Just too much to fathom, I guess. That rejection – indeed, betrayal -- has been the most devastating aspect in my lifelong struggle with heart defects; and now there is the vision loss to complicate the situation even further! Thankfully, my highly capable cardiologist for the last 15 years has not denied me the facts, nor his trust. He has looked with a clear mind and compassionate heart at the mess that previous doctors have made with me and the emotional damage I’ve suffered at their hands, and he has become a loyal and understanding friend, an absolute treasure to me.  

Generally, too...I learned from an early age that my heart history was not good fodder for conversation. For example, after my first heart surgery...in 1972, I wrote my long-time Japanese pen pal about it. Even though I sent her several subsequent letters, as well, I never heard back from her. I still suspect that she just couldn’t believe it.

And in college, when other students would ask me about my scars...and I’d tell them about my surgery and pacemaker – a real oddity at that time -- that would be the end of any possible friendship. I learned it was best to avoid the subject -- which is difficult to do now, because I need to explain the vision loss….

In 2006, my home health care workers -- learning my history, and then seeing my difficult struggle to recover after my second heart surgery (which my cardiologist and I anticipated for 10 years) -- told me I should write a book. “Who would read my story?” I asked. “No one wants to hear it!”...

Jerry, I’m the same person now that you’ve known. I’m not crazy, though those who won’t accept my situation, or who are threatened by it, might say that I am; and I’m sure my vision loss has changed my appearance and actions: I have to scan my surroundings differently now and rely on my other senses more to figure things out and find my way. Until I lost (my sight), I didn’t realize how much information full vision provides. With full vision, I really didn’t have to try to comprehend my surroundings; they were all just laid out before me! With very limited, shrouded, low vision, I have to work very hard now, constantly, to assess and re-assess my ever-changing surroundings: It took me a year to learn how to use my remaining vision, and it is a process of continual fine-tuning. I’ve had to tell people, because they tend to think I’m incapable because I’m blind: “I’ve lost my sight, not my intelligence or experiences.” I believe my mind has sharpened because of my vision loss, as I’ve learned to use it more expansively in many ways. ...

Anyway... I hope I might “see” you again. ...