By Mike DuBose with Dr. Surb Guram, MD
“It’s an ascending thoracic aortic aneurysm. You’ll need open heart surgery.” When I heard the words coming from my doctor’s mouth, I was stunned! My cholesterol and blood pressure were healthy, and I had absolutely no symptoms, family history of heart disease, or chest pain. I felt great! But a simple EKG had turned up something odd, so my internist ordered an ultrasound, nuclear stress test, and, eventually, a CT scan. These tests confirmed that I had an ascending thoracic aortic aneurysm, which, at that time, was just a lot of big words I had never heard before. Without treatment, my doctor explained, the aneurysm would eventually grow to the point where it would rupture, and I would die.
For three years, my excellent local physicians (internist Dr. Surb Guram, surgeon Dr. Reid Tribble, and cardiologist Dr. Barry Feldman) monitored the aneurysm as it expanded. During this time, I researched my condition, learning that the aorta is the largest artery in the body. It carries oxygen-rich blood from the heart through the chest and abdominal area, where it divides the blood and sends it to each of the legs. I also learned how deadly aortic aneurysms can be, with 45,000 Americans per year passing away due to diseases affecting the aorta and its branches. Of those people with ruptured aortas who make it to a hospital, only 25% survive!
My research underscored the seriousness of my condition, but I knew that open heart surgery also carries with it some major risks. At that point, all I could do was wait. One day, as my family and I were literally walking out the door to leave for Hawaii, Dr. Guram called and said that the aneurysm had grown to an operative stage of 5.5 cm. That I would soon need open heart surgery was not what I wanted to hear right before a fun vacation, but I was somewhat relieved that the time for action had arrived.
In 2012, I had open heart surgery at the Cleveland Clinic in Ohio. Since that time, I have continued to learn about my condition and have helped many others prepare for and recover from heart surgery. I decided to write about my adventure to share information that I didn’t find in my research and was never warned about by others. I just stumbled across it during my experience!
I am not a medical doctor. The purpose of this article is simply to share, as both a patient and a researcher, my experience of having heart surgery, along with tips for you to consider as you travel down this road. Of course, my advice is no substitute for the attention of a medical professional, and I highly recommend working closely with your doctors to decide your course of treatment.
Learning About Your Condition
My initial recommendation is to establish a relationship with a competent internist. If you have yearly comprehensive wellness exams, your doctor can identify and treat medical problems in their early stages—one key to extending your life. Note any unusual symptoms, because the more details you can tell your doctor, the higher the chances of accurate diagnosis and treatment. Encourage your doctor to run as many tests as he or she feels necessary to come to a good conclusion. They can be time-consuming and costly, but it was one such test that revealed my aneurysm!
I have learned over time that, to make effective decisions, you should research your problem with an open mind, understand its causes, seek input from different perspectives, develop several options, and then make a timely decision based on the facts before you. In addition to doing your own research, listen to your doctors’ counsel so that you can intelligently discuss your prognosis with them and take an active role in your treatment.
Reputable websites are an excellent source of information for better understanding your health issues. If you are not comfortable with Internet search engines like Google, ask a friend or family member to research the condition for you and print out relevant articles. Another resource that may be helpful to you is an article I recently published with Dr. Surb Guram about how to work effectively with your doctors. You can read “How to Get Excellent Care from Your Doctor: Tips That Could Save Your Life”.
Selecting a Cardiologist
Once you have been diagnosed with a heart condition, locate a competent cardiologist. Survey your doctors, nurses, neighbors, coworkers, church members, relatives, other heart patients, and friends to find professionals that they have either heard great things about or have received good care from. I chose Dr. Barry Feldman in my town of Columbia, SC because he has a great reputation. He and Dr. Guram talk closely (effective communication between all of your doctors is very important). Dr. Feldman patiently explains his patients’ problems to them, is humble and smart, and does not rush you out of the door. His cardiac nurse practitioner, Phyllis Williamson, is also brilliant.
If you keep hearing the same names or practices being recommended, you are on the right trail. Ideally, you want to select an experienced cardiology physician with heart surgeons in the same group. Once you pick a cardiologist, ask your internist for a referral, which will secure an appointment faster than calling yourself. Have your internist’s office send a copy of your medical records to the cardiologist to expedite treatment, and call the cardiologist’s office before the appointment to confirm that the records were received. Before any doctor visit, create a detailed list of your problems, questions, and concerns so that the meeting will be productive.
Determining the Venue for Your Surgery
Open heart surgery has become increasingly common, with more than 500,000 individuals in the US undergoing it each year. There are many conditions that may require heart surgery, such as artery bypasses, valve replacements, aneurysm repair, rhythm adjustments, and transplants. New technologies are constantly being developed to save even more lives. For example, doctors are now employing robotics to conduct less invasive heart surgery, and for some conditions, repairs may now be made through the groin (or other body entry points) rather than the sternum. There are plenty of places across the US where you can receive great care.
If a thorough assessment indicates that you will need heart surgery, think carefully about the hospital where you want to have the procedure done and the surgeon who will perform it. You should always perform research before committing to any major surgery (including heart surgery), as there is a small possibility that you could die during the procedure. If your condition does not require immediate action, take your medical records to another cardiologist or surgeon outside of your doctor’s practice for his or her opinion.
Because of the complexity of my condition, Dr. Guram felt that I needed to have my surgery performed at a well-known hospital with an experienced staff and one of the best surgeons in the nation. We both independently researched the possibilities and came up with the same surgeon and hospital as our top picks. In fact, US News and World Report ranks the Cleveland Clinic in Ohio, where I chose to have my open heart surgery, as the best cardiology and heart surgery facility in the nation (see http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery for the report).
There are several great heart hospitals other than Cleveland Clinic that may also suit your needs. All of these have been noted as top choices by US News and World Report in recent years:
Consumer Reports also offers hospital rankings at www.consumerreports.org/health/hospitals/ratings, which you can search by location. You can then filter the rankings by factors like overall heart bypass surgery performance and avoiding infection.
The official US government Medicare website also offers a helpful tool at www.medicare.gov/hospitalcompare where you can search for hospitals in your area and assess how many “stars” (ranging from 1-5) each has been awarded. The stars are based on patient experience surveys; “timely and effective care” (how long it takes patients to receive medical attention for different ailments); surgical complication and infection rates; hospital readmission and death rates (within 30 days of a hospital stay); usage of medical tests (particularly, whether they perform too many unneeded tests); and value of care patients receive for their money. While all of these factors are important, you should pay special attention to the surgical complication, infection, hospital readmission, and death rates when selecting your hospital.
Traveling away from your home area to go to a highly-ranked hospital has pros and cons. Research on open heart surgery places the death rate at 3%, depending on the experience of the surgeon, the hospital, and their staff, but going out of town to a more prestigious hospital requires expensive hotel stays and separates you from your local support system. If you choose to travel for your surgery, some hospitals (including Cleveland Clinic) will send you an information packet that includes discounted hotel rates. (If not, call local hotels to ask about unadvertised rates that are connected to the hospital.) Also, explore the hospital’s website and ask about special rates for local services. Cleveland Clinic contracted with a limo service to provide me and my family with one free pickup and return to the airport.
All the pre-surgery tests and appointments can be time-consuming, so if you are having your surgery a significant distance from your home, I suggest making the trip alone or with one person during that period and having your family members come up a few days before the surgery. If possible, try to see some sights and have fun before your hospitalization so you go in relaxed and happy. The night before my surgery, we went out to dinner and had a good time!
If you select a local hospital, pick the one with the most experience in heart surgery. Consumer Reports ranks hospitals by state, which can help guide your selection. Usually, the best surgeons and medical staff can be found in larger metropolitan areas.
Pre-Hospitalization Tests and Documentation
Having been through many medical tests, I have seen firsthand how widely results can vary between different machines and technicians. An ultrasound at one hospital can produce images and measurements of a heart that are different from those taken at another. Doctors like to run tests at facilities with modern equipment and operators they trust, and they will usually want you to have future images taken at the same place so that they can compare them to your baseline over time.
When choosing a surgeon, cardiologist, test location, and hospital for a future heart surgery, ensure that they are all located near each other. Because I live in South Carolina, I followed my doctors’ advice and had most of my tests run in Cleveland the week before the surgery to avoid making multiple trips.
CT scans offer the best views of the heart from different angles, and chances are you will need at least one. However, CT scans shower patients with far more radiation than other diagnostic tests. For example, a routine head CT generates the same amount of radiation as 400 dental x-rays, and the dose from a chest CT equals more than 100 chest x-rays. That radiation can wreak havoc at the cellular level, breaking or altering DNA strands and causing mutations that can lead to cancer. Studies from Columbia University and the National Cancer Institute have predicted that radiation from CT scans could kill 15,000 to 29,000 people a year! Doctors and manufacturers are beginning to address these dangers by encouraging other tests and developing new machines for diagnosing conditions with less radiation, according to the Wall Street Journal.
I had two CT scans before to going to the hospital for surgery, four at the hospital before and after surgery, and a seventh at a local hospital when I returned home and experienced complications, so I have been exposed to the radiation equivalent of approximately 700 chest x-rays. I believe that some of these scans were needed and others were just done because they generate fast and detailed results.
Don’t sit and wait to be told what tests to have—understand and give input into your treatment options. Explain your concerns about radiation to your surgeon and ask if you can opt for high-contrast MRIs instead. MRIs work with magnetic imaging and take longer than CT scans, but they don’t expose you to large amounts of radiation. Some hospitals now use modern CT scan equipment that emits lower levels of radiation, but I still caution against them. You don’t want to fix your heart condition only to raise your risk of cancer later! However, sometimes CT scans are necessary, especially in emergencies.
Prior to surgery, your surgeon will most likely order other tests, like an ultrasound, echocardiogram, blood analysis, and most importantly, a heart catheterization (often referred to as a heart cath). In this procedure, cardiologists typically insert a thin line with a camera on it through your groin or other body entry point to look inside your heart and assess the condition of the valves and arteries. Then, surgeons use the findings to decide the extent of the surgery that you will need (e.g., if your arteries are blocked, and if so, how many need repairing). I was glad to hear that, apart from the aneurysm, surgeons scored my heart a 10 out of 10!
Your cardiologist and surgeon will need all of your medical records prior to surgery. I suggest picking up both the hard copies and imaging test CDs personally from the relevant doctors and test centers. Then, deliver them personally to the surgeon’s office or send via Federal Express (with a tracking number) to the medical facility. Hospitals are big places, and it is easy for things to get lost in the mail there. If mailing your records, get the exact physical address, the name of person who needs to receive them, and their telephone number; then check to make sure they have been delivered prior to meeting with the surgeon. Although my records were verified as delivered to the hospital, my surgeon’s staff never received them. I would also suggest carrying additional copies with you!
Insurance Verification and Pre-Admission
My 2012 surgery and tests at Cleveland Clinic cost $175,000, but were almost completely covered by my insurance. Before you schedule your surgery, be sure that the facility you select is considered “in-network” by your insurance company or, if you are on Medicare or Medicaid, that the hospital accepts it. Otherwise, it will be a very costly out-of-pocket expense. I always ask the registration folks to conduct a pre-certification to ensure I am covered and to give me an estimate of my co-pays or deductibles. If you have reason to believe that you may need heart surgery in the near future, you may want to choose a more expensive monthly insurance payment with lower co-pays and deductibles during your work’s open enrollment period. The hospital will contact you prior to surgery to obtain your basic information. It is important that all of this paperwork is completed and received prior to testing and surgery. I had to go through two pre-certifications, one for testing and another for surgery.
Also, instead of bringing all your medications in a bag, simply make a list of them (separated into prescribed, supplement, herbal, and over-the-counter categories), their dosages, and your pharmacy’s contact information. You won’t be able to take your own medicines in the hospital. Make several copies of your list for the doctors you will visit as you prepare for surgery so they can easily see all of your medications at one glance. You will probably be asked to discontinue any blood thinning medications (like aspirin and fish oil) several days before surgery. Carefully read all of the information the hospital sends you! While a lot of it is repetitive or unnecessary, there will be some helpful morsels of information in the packet.
Mentally Preparing for Surgery
Heart surgery is no picnic. Expect some pain after your surgery, but keep telling yourself and your family, “Things may be hard for a while, but I will get better and live longer.” Patience and a positive attitude are keys to preparing for and recovering from open heart surgery. Quite frankly, I was excited about having the surgery because I wanted to get it behind me, but I have seen others who were very depressed, scared, and worried prior to their surgeries. However, a depressed mood can add weeks or months to your recovery, whereas a positive outlook expedites it! Delaying your surgery will only make the mental stress worse.
At the same time, no surgery is risk-free. Although it sounds morbid, get everything in order before your surgery as if you will not live through it. You simply have to “hope for the best and plan for the worst.” Every day I plan to die, while hoping that my future will be bright and long, and I recognize that every day is a gift from God.
If you are spiritual, ask others to pray for you. Our family doesn’t often pull the big “prayer trigger” with others, but more than 1,000 Christians across the world were praying for me when I had my open heart surgery. I could feel those prayers after the surgery!
Meeting with Your Surgical Team
Your surgeon and his or her team will meet with you the day before the surgery to inform you about the process, gather information, complete forms, and prepare for the procedure. This is your time to ask questions and make requests, so write down any concerns ahead of time. Bring your list of medications and supplements, and be prepared to answer the same questions repeatedly because some facilities’ computer systems do not share information. During your tests, on the day of your surgery, and after the surgery, expect staff to constantly ask you for your name, date of birth, and your procedure to ensure you are the correct patient. I’m glad they did—once, they almost gave me someone else’s medicine!
Ask for copies of all your records for your local doctors so they may treat you properly when you return home and include their names, addresses, and fax numbers on your admission papers. I also suggest that you ask for anti-nausea medications prior to and during surgery. I was severely nauseated for days after my surgery, and it was worse than the surgery itself! This is also a good time to request alternatives to CT scans.
The Morning of Your Surgery
You will probably have to arrive at the hospital at some ungodly hour the morning of the surgery. There is no use in taking more than one family or member or friend with you; you can just ask the rest to come later when the surgery is over. Leave valuables at home or in your hotel safe. The person accompanying you should have your license, insurance information, and a credit card in case co-pays are required, but you will probably have paid prior to this time. Once you arrive at the hospital, you might have to check in with the admissions office again but may be able to avoid it if you asked to be cleared for surgery in advance. You will then proceed to the pre-op area.
During the pre-operation period, they will begin an IV and prepare you for surgery. I prefer to be second in line for surgery to ensure that the surgical team is “warmed up.” Often, you just sit in bed and wait until the surgical team is ready, which can take a while. You may want to ask for extra blankets during the pre-op, as it will be very cold in the operating room.
From the pre-op, you will be rolled into the operating room, which will look like something from Star Wars. Repeat your desire to the anesthesiologist (who will be one of the first to see you) for anti-nausea medications during surgery. I joked with my surgical team, saying, “I hope everyone is in a good mood today!”
Your surgery and post-recovery will likely take 3-5 hours. I suggest that family members stay near the hospital but not in the family waiting area, which will just add to their anxiety and worry. They should bring reading materials, earphones, and devices such as a CD player or smartphone to listen to music while they wait. They could even visit nearby shops and businesses, grab a bite to eat, or do anything else that helps distract them and put them at ease (by the way, the food in the Cleveland Clinic’s restaurants is excellent, but patient food was not!). The Cleveland Clinic gave my family a beeper to alert them when the procedure was almost over. Most places will contact your family roughly 30 minutes before the surgery is complete and they need to come meet with the surgeon.
The Intensive Care Unit (ICU)
After surgery, you will be transferred to a cardiac intensive care unit. You will probably be unconscious for a while, and visitation will be limited. Your family should be prepared to see you hooked up to all types of scary wires, tubes, and equipment and not looking your best. Most likely, you will just want to sleep and will probably not want any visitors.
If I had to do it over again, I would probably ask for few, if any, post-operative pain medications like morphine. Most pain medications cause nausea and serious constipation. If you are in extreme pain, you should take painkillers; however, if you are nauseated like I was, avoid them—they will make it worse. (Expect medical staff to push them, however!) It is up to you, but if you do accept pain meds, try to take as few as possible and stop them soon after the surgery.
You will be monitored to ensure that your condition is stable before you are sent to a regular room on the cardiac ward. The level of care and monitoring in the ICU is usually excellent because of the few patients there and the small staff-to-patient ratio.
Transfer to the Cardiac Ward
The nurses and staff on the cardiac ward will be attending to a lot of patients, so don’t expect an immediate response if you call for assistance. A few suggestions:
When you arrive at home, you will probably be exhausted and should take it easy. You cannot rush recovery, but there are some things you can do to enhance your chances of a good outcome:
The bottom line: While some aspects of heart surgery are predictable, every patient reacts differently to the procedure and its aftermath. There is no one-size-fits-all solution. As you go down this difficult road, remember what Winston Churchill said:“Never, never, never give up!”
Even while experiencing severe medical problems in the hospital, I found great comfort in the knowledge that God was with me and was looking after me! I hope that you will, too. I wish you well on your journey. Hang in there, and it will get better! You may contact me through my non-profit website at www.mikedubose.com if you would like to discuss any concerns that you were not able to address with your doctors or through online research.
About the Authors: Our corporate and personal purpose is to “create opportunities to improve lives” by sharing our knowledge, research, experiences, successes, and mistakes. You can e-mail us at [email protected].
Mike DuBose received his graduate degree from the University of South Carolina and is the author of The Art of Building a Great Business. He has been in business since 1981 and is the owner of Research Associates, The Evaluation Group, Columbia Conference Center, and DuBose Fitness Center. Visit his nonprofit website www.mikedubose.com for a free copy of his book and additional business, travel, and personal articles, as well as health articles written with Dr. Surb Guram, MD.
Dr. Surb Guram, MD is a board-certified internist and a graduate of the University of South Carolina School of Medicine. He is a partner with the SC Internal Medicine Associates in Irmo, SC and has practiced internal medicine in the Midlands for the past 30 years. See www.scinternalmedicine.comfor more information on Dr. Guram and his practice.
Katie Beck serves as Director of Communications for the DuBose Family of Companies. She graduated from the USC School of Journalism and Honors College.
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