An Insider's Guide to Early Cardiac Care
I'M ABOUT TO TAKE YOU ON A TRIP, ONE THAT STARTS AT THE moment of diagnosis and does not end until many days, months, or years afterward. Just how long the trip will last depends on a number of factors-the severity of your heart disease, your state of mind, the quality of your relationships, and, most important, just how badly you want to reclaim your life.
It doesn't matter precisely where you are on that journey-whether you just got word that you need a stent or a bypass, whether you are about to be discharged after having a heart attack, or whether your physical recovery took place more than a year ago. No matter where you draw your starting line, your journey will span the same basic route.
In this chapter, I start the journey at the beginning, offering you advice that can help you the moment you learn of your diagnosis. You'll find advice for how to pick a hospital, how to make the best of your hospital recovery time, and even how to get from the hospital to your home in the least stressful way possible. You'll find everything you need here for those first steps toward your starting line. Then, in Part 2 of this book, I'll fire the starter's pistol, and you'll start moving toward the finish line, one step at a time.
How to Pick a Hospital and Surgeon
Some of you reading this book may be just discovering that you have heart disease and you need to make some choices. This section is for you. Perhaps your doctor recommends surgery, but you wonder whether you can manage your condition with medication. Perhaps your doctor recommends a stent, but you wonder if you should just bite the bullet and get the bypass.
Here's what to do, and it's the kind of advice that only a doctor who has lived through this can give you. Before agreeing on any procedure, get three opinions. If they do not concur, choose bypass surgery over an angioplasty or stent. Bypass surgery may be more invasive and have a longer recovery time, but it tends to result in longer-lasting good health. Many patients who undergo angioplasty or stenting need a follow-up procedure within two to four years. Believe me, you want this to be your last trip to the hospital. You want to walk away from this experience knowing you are fixed. You don't want to be continually wondering, "When will this stop working?"
The only procedure that can provide that kind of peace of mind is a bypass. That's why I chose one. I had other choices, of course. One cardiologist told me, "If it were me, I would not opt for surgery. I would get multiple stents." When he said that, I looked at him incredulously and said, "But I have a lot of blockages. It's pretty extensive." He told me that the stents were all I needed. I told him I'd think about it and I got another opinion. This time I asked a cardiac surgeon. He bluntly said, "Marc, it's time to go to the OR."
I said, "But the cardiologist told me that stents were all I needed." He was someone I knew well. He said, "Marc, do you think I would operate on you if it wasn't necessary?" I said, "No, I don't." But I got a third opinion anyway, this time from a well-known cardiac surgeon with one of the most prestigious hospitals in New York. He said, "So when do we drape you and operate?"
I scheduled myself for a bypass.
Of course, it's a big operation. The good news is this: It usually saves lives rather than ends them. Fewer than 3 percent of people die on the table or soon after.
You can increase your odds of survival by picking the best surgeon and hospital for your bypass, angioplasty, or stenting. Some hospitals have much better success rates than others. The top hospitals have a bypass death rate of just 1.4 percent, whereas the worst ones have a death rate that's around 6.5 percent. This is your life we're talking about, so it makes good sense to shop around for a hospital that has a good track record, one with a death rate closer to 2 than to 6. You can find out the success and death rates for various hospitals by checking any number of institutions that offer health-care " report cards." I've listed a number of these companies in Chapter 13. Also, make sure your hospital is accredited and houses a cardiac center. Do not make the mistake of choosing a low-volume hospital just because it's close to home. Ask how many bypasses the cardiac center does a year.
The number should be at least two hundred.
Pick a surgeon who:
Is board-certified in the field of open-heart surgery. To do so, check the lists of board-certified cardiothoracic surgeons in the American Board of Medical Specialties (ABMS) annual directory, available online at www.abms.org. Also, the letters FACS should appear after his or her name. This means that the doctor is a Fellow of the American College of Surgeons, and adds another layer of certification.
• Specializes in heart surgery. Ask how many surgeries he or she does a year. The number should be between one hundred and two hundred.
• Is recommended by others. Ask the opinion of other surgeons in your area along with other heart disease survivors.
• Has a good track record. The surgeon's mortality rate (total number of
deaths) of less than 2 percent and a morbidity rate (total number of adverse complications that result in long-term poor health) between 5 and 7 percent. To find this information, use any number of healthcare report card services. Also I've listed them for you in Chapter 13.
During the Days Leading Up to Surgery
If you are about to undergo a bypass, angioplasty, or another surgical procedure to fix your heart, do the following before you go to the hospital if you are able to prepare.
Line up support. Don't do this alone. No army commander goes into battle without backup. Those who go willingly go with teams of trusted associates at their side, protecting them and moving them forward toward a common goal. In my case, my team was my wife, my mother, my children, my brother, my brother-in-law, my in-laws, select friends and colleagues, certain professionals, and a higher power that helped me fight, and helped me find and claim a "Chapter 2" of my life.
You need a similar support team. You won't know the names of everyone on your support team now, but you do need to identify at least one person. It should be someone who can hold your hand from this point forward, someone who is calm enough to ask those important questions and hear those important answers, someone who is strong and assertive enough to act on your behalf to make sure you get the best care possible. Let this person serve as your advocate, especially during those times when you are too tired or frustrated to be your own.
For me that someone was my wife, Jamie. For you it might be a spouse, a sibling, an adult child, or a best friend. Pick an advocate, and let that person in. Talk about your fears. Ask that person to accompany you to the hospital for the surgery and to be in the recovery room when you wake.
Ask for help during the initial weeks of recovery, too.
But only tell other people about your heart disease on a need-to-know basis. We all have those people in our lives whose very presence does not allow us to feel strong, happy, and calm. Something about them rubs us the wrong way and causes us to feel tense. You definitely do not need such people visiting you while you are in the hospital, and you have the right to turn them away. Most of us also know people who like to gossip and seem to enjoy spreading bad news about the hardships of others. You do not need people talking about you behind your back while you are recovering.
Finally, some of us work with people who are very competitive and who will use any sign of weakness as a personal advantage to get ahead in the work world. You do not need people using the details of your illness for their own personal gain.
For those reasons and more, I recommend that you do not announce your heart disease or upcoming operation. I often question my decision to have my bypass at the same hospital where I worked. That one decision broadcast my disease to everyone on staff and left me open to their gossip and backbiting. Tell the folks at work only what you must tell them in order to get sick leave and time off. To me, this is a very critical point. Limit your "need to know" crowd to family and very, very close friends. Write the names of these people on a list, and give this list to the hospital floor nurse with detailed instructions that she or he should only allow people on the list to visit you. Will some visitors be disappointed when they learn they are not among the chosen few? Of course. Will some people feel slighted? Almost definitely. Right now, however, your health and personal sanity are much more important than the feelings of others who want to visit. This is even true for family members. Some family members will not be able to deal with what is happening to you. When I had my bypass, my mother was eighty-eight. The idea that she might outlive me blew her mind. She did not come to the hospital, and that was good for both of us. Let family members know that you would prefer no visit to a tense one.
Take as much time off as you can. If you have disability insurance, look into activating it during your recovery time. Talk to the human resources department at work to find out how much vacation and sick leave you can take. Consider taking additional unpaid leave if you can afford to.
If your spouse works, see if she or he can take some time off, too, especially during the first few weeks of your recovery and longer if possible.
Pack the following things to take with you. You'll need a pair of slip-on shoes. You'll wear these during your trip back home postsurgery, as you won't be able to bend over to tie your shoelaces. Also pack a very comfortable outfit, one that is easy to get your arms in and out of. A bathrobe will do just fine! Consider taking a baseball cap and sunglasses, too, especially if you'll be in the hospital for a few days. After being indoors that long, the glare of the sun can be uncomfortable, and you don't need anything else to make you even more uncomfortable during that long, hard walk from the hospital door to your waiting car. You also might want to bring a puffy jacket, such as a ski jacket. You'll wear it during discharge, not necessarily to keep you warm, but to protect your tender incision area and prevent other people from getting too close to you. Also pack small items that you will find comforting to either look at or listen to as you recover. These items will vary from person to person and can include anything and everything from a music player to photographs to a lucky charm.
The Stuff Only a Doctor Can Tell You
Just before and after surgery, there are several things that I suggest you request of the hospital staff. They include the following:
Ask to have your breathing tube removed while you are still under. When you go under general anesthesia, a breathing tube is placed in your windpipe to ensure proper breathing during surgery. This is necessary and lifesaving, but not something you want to experience while you are fully conscious.
I've seen the looks of terror on people's faces when they wake and realize a machine is breathing for them. It's incredibly scary and unpleasant to have a breathing tube removed while you are conscious. Avoid it if possible by asking the medical staff to remove your tube while you are still sedated. Also, make sure, if you must be awake during the removal, that a loved one is in the room with you to hold your hand and offer encouragement and support during the process.
Ask to be given a sedative before surgery. There's no reason to feel terrified as they wheel you into the operating room. Ask for something to calm you beforehand. Your anesthesiologist should be able to give you something intravenously, such as Valium.
Ask if the hospital allows overnight visitors so a spouse or other loved one can stay with you in your room the entire night. Don't be macho about this. Don't say, "Oh, that's okay, get your rest." You are the one who needs your rest. Allow your caregiver to be there for you. There's nothing scarier than being alone in your room in the middle of the night and wondering just how long it will take a nurse to respond to you pressing the call button. If you are in a semiprivate room, your spouse or other loved one can sleep in a chair or even in a sleeping bag on the floor. If you upgrade to (and pay extra for) a private room, your loved one will have more space. I did and it was worth it.
Ask for sleeping medication. There's absolutely nothing wrong with taking a medication to help you sleep, especially during the first couple of nights after surgery. It's hard to sleep in a hospital, even when you are pain free. Hospital staff will wake you repeatedly as they fiddle with catheters, blood pressure cuffs, and monitoring devices. Most hospital personnel truly don't care whether or not you get any sleep. They just want to make sure that the surgery took and that your heart muscle is getting enough blood flow. Sleep medicine will help you sleep through all this, so you can heal more quickly. For a detailed description of specific sleep medicines, see Chapter 3.
When they are removing your catheter after surgery, ask whether or not it is deflated. Occasionally nurses forget to deflate urinary catheters before removing them. When this happens, it's incredibly painful. I know, because it happened to me! I bled from the damage. If this can happen to the person who runs the surgical department at the very hospital where the procedure is performed, it can happen to anyone!
From Hospital to Home
You'll be in the hospital anywhere from one day (for a stent) to three days or longer for a bypass or heart attack. No matter the type of procedure or the length of stay, your trip home just might be one of the hardest and longest trips of your life. Here's what to do.
Wear slip-on shoes. Remember those slip-on shoes I suggested you pack? You'll need them for the trip home. Same with that comfortable outfit. Same with that baseball cap. Same with that puffy jacket.
Go with two people. Arrange to have someone pick you up at the hospital. Ideally, have one person drive and a passenger who can assist you, if needed, during the trip. Ask to be driven in the biggest car available, such as a van or station wagon. That way you can lie down if you feel you need to.
Go straight home. Don't stop to fill prescriptions or get anything from the store. A loved one or a friend can run out and get whatever you need later after getting you settled at home.
Your Emotional Wounds
Your physical wounds will heal in a matter of weeks. Your mental wounds will take much longer. You will ask, "Why me? Why did this happen to me? What did I do to deserve this?" You will tell yourself, "I am not strong enough to face this. I cannot go on. This is too hard." You will worry, "What if I die? How will my family cope?" You will experience any or all of the following:
Fear. You will come to grips with your mortality and what the inevitable end of your life-today, tomorrow, next year, next decade-means for the rest of your life. You now realize that the runway of life is continually getting shorter, that it doesn't go on forever, and that you are now probably closer to its end than you are to its beginning.
Remind yourself: "I'm still here. I'm still alive, and I'm going to make the best of it by facing down my fear and living the rest of my life to the fullest."
Guilt. You might blame yourself for ending up here. You might spend time obsessing about what you might have done wrong, analyzing your past diet, exercise habits, or stress level.
Remind yourself: "The past is the past. I can't change how I lived in the past. I can only change how I live today, and today I am doing all I can to beat heart disease."
Anger. You might have "Why Me Syndrome." For instance, you might tell yourself, "This isn't fair. I've had a healthy diet, have been very fit, and have never smoked. Why did I get heart disease while that overweight couch potato smokestack at work is completely healthy? It's not fair!"
Remind yourself: "Life isn't fair. There's nothing I can do about that right now. I can, however, focus on doing everything I can to get and stay better. I will live healthy to stay healthy."
Denial. You may, in the future, be tempted to tell yourself, "My surgery fixed me. I don't need to eat differently, de-stress, or exercise." The truth of the matter is that it only fixed you temporarily. If you do not do all you can to keep your arteries clear, they will indeed clog up again. I'm willing to bet that you don't want to spend your last years on this earth confined to a bed. I'm willing to bet you don't want to spend your last years dependent on the help of others. I'm willing to bet you don't
want to spend those years wishing you felt more energetic, less uncomfortable, and more mentally alert. Indeed, you want to die feeling healthy and fit. You want to age with strength and vitality. We all do.
Remind yourself: "Yes, my surgery bought me extra time. I want that time to last as long as possible, so I am going to do everything I can to get and stay better."
Loathing. You might come to loathe your body, both for how it looks (emaciated) and how it feels (achy, painful, and weak). You might come to loathe your mind, for inflicting the fear that keeps you from relaxing or for causing your thinking to seem clouded. I wish I could promise you that you would regain every aspect of your mental and physical capabilities after surgery. I can't. Some things just won't come back. You may have many losses.
• The loss of your body and how it once looked.
• The loss of what your body can do for you on any given day.
• The loss of your place in the hierarchy in the community or at work.
• The loss of your confidence.
• The loss of your naiveté about life and death.
Remind yourself: "I still want to live, despite my losses. I will define my life and I will learn from this. My heart disease will change me for the better."
Your Back-to-Life Plan
You can live your life again. You can experience yet another chapter in your book of life. Just follow in my footsteps. No one is the same after this, but many people are better. You need to see this not as a death, but as a rebirth, as a chance to reinvent yourself for the better. As you ready yourself to embark on this important journey, I'd like you to think about two important questions.
Question #1: How do I want to die?
I suppose if we all had our way, we just wouldn't die. We would live forever. I wish I could promise that. Think of how many billions of books I could sell if I had the answer to eternal life!
I don't have that answer. No one does. We all die. Now that you've accepted this fact as an inevitable part of life, let's figure out what to do about it. Make a decision. How do you want to die? Personally, I want to die when I'm well into my eighties or nineties, when I'm running my twentieth or thirtieth or fortieth marathon. When I die, I want to feel healthy and strong. I want to feel at peace with the world. I want to die knowing that I made the world a better place, that I was kind to people who needed my kindness. I want to die knowing that someone loves me.
That's how I want to go out. So take some time right now to think about this question. Write down
your answer and keep it handy. Use it as your motivation to do everything you can to live and keep living.
Question #2: How do I want to live?
What are your dreams? How do you want to be remembered? How do you want to make a difference? The answers to those questions just might give you the will to keep going when your recovery becomes tough and, believe me, it will get very tough. Love of family can get you so far. Love of career can help, too. Love of life? That's what gets you to the finish line.
Reprinted from Back to Life After a Heart Crisis by Marc Wallack, M.D., and Jamie Colby by arrangement with Avery, a member of Penguin Group (USA) Inc., Copyright © 2010 by Marc Wallack, M.D., and Jamie Colby.