Mitral Valve Repair-One Person's Story
My name is Howard Levine. I am writing this blog to try to inform and to help others understand through my experience Mitral Valve Repair surgery. Not just the surgery—for which you are thankfully asleep and which seems to take about a second (more on that later), but also the decision-making process and the recovery.
I started writing this blog on day-4 post-surgery—September 24, 2017 to record this experience in as real time as possible. I hope that my experience will help others navigate this process and ease both the decision-making and the healing.
Some context. I am a 63-year-old lawyer and law firm partner with our firm’s office located in downtown Portland, Oregon. I am hard working, driven, and have rarely been out of the office for illness in over 35 years. I am a reasonably careful eater, and have worked out doing cardio exercise regularly for nearly 30 years. My weight is normal. I have been on cholesterol and blood pressure medicine for about 8 years. Mitral valve problems run in my family.
How did I learn about this my mitral value issue? Just before my wedding to my wife Jan in 1986, when I was 32-years old, and to ensure she was not receiving damaged goods, I went to my physician for an annual physical. After listening to my heart, he mentioned I had a heart murmur and that I should see a cardiologist. I had heard of a heart murmur, but did not know it could be a precursor to something potentially more serious.
During the cardiologist’s appointment, I took a stress test and some other tests. He told me had a “mild Mitral Valve Prolapse” and not to worry about it. The protocol for someone with Mitral Valve Prolapse (MVP) back in 1986 was to take antibiotics before going to the dentist to avoid dental induced heart infections (Endocarditis). He told me the MVP may become a problem, but only when I get older. I had no idea then that “older” meant 63 years old.
Life went on as normal for the next twenty-five years. About 7 years ago, my doctor, Malcolm McAninch, recommended I see a cardiologist. Apparently, the sound of the “murmur” had progressed to the point that he decided it was time to involve a specialist.
He referred me to Tyler Gluckman, at the Portland Heart and Vascular Institute at Providence Hospital in Portland. I met with Ty and he listened to my heart, checked my vitals, looked at my blood work, and gave me an EKG and an Echocardiogram. He explained that I had an apparent defect in my mitral valve, which regulates blood flow between the left atrium and left ventricle. Ty explained that when the heart pumps blood between the chambers, some amount of blood regurgitates back to the upper chamber, because the Mitral Valve does not fully close. I suspect this is somewhat like a failed backflow device in a sewer system.
This condition, he explained, could become problematic, and that I should return in a year for another checkup.
This protocol continued until about 2015 with the only change being the regurgitation progressed to “moderate”. Just before our younger’s daughter’s wedding in June 2017, I returned for my annual appointment. After the examination, Ty told everything sounded good, but that I should come back for a follow-up echocardiogram, as it had been a couple of years since my last one. He then told me that if the echo looked good, I did not need to return to him for two years. Great news I thought.
I decided to focus on our daughter’s upcoming wedding in Virginia, enjoy the special day with our family, and take the echo after we returned to Portland after the ceremony. Comfortable that this echo would be good, I took it on the Friday before Father’s Day.
DIAGNOSIS AND DECISION TIME
The next Monday morning at around 7 am, when I arrived at the office after my usual morning workout, Ty called my mobile phone. He told me that the echo showed the regurgitation has progressed to “severe” and that I need to see a surgeon to have another test—a Transesophageal Echocardiogram (the “TEE”). My life changed with those words. He said it’s “not an emergency”, but he suggested I not hesitate. He told me that surgery was almost certainly something I was going to have to consider. Some of the best advice he gave me then followed. “If you need surgery and decide to have it, which I recommend if this diagnosis is confirmed, don’t decide now and then a wait a year to do it—decide and schedule it.” Simple, yet profound advice that resonated with me all summer.
I had to absorb the news. After about a week of stewing, I scheduled the TEE. The TEE involves anesthetizing the patient and placing a camera-like device down the esophagus to evaluate the heart. It is an easy and pain free procedure performed in the hospital.
Having never had surgery or stayed in a hospital, I was pretty uncomfortable and a bit nervous when Jan and I arrived for the test. I tried to be stoic, but I suspected deep down that this would not my last visit to the hospital. When the doctor who performed the TEE returned, he confirmed the severe regurgitation diagnosis.
I decided to read some more about MVP and what would likely happen if I didn’t take some action—irreversible damage to my heart, enlarged heart, compromised heart function, among other things, none of which are a good thing. I was convinced. No reason to delay. Keeping Ty’s advice in mind, I concluded it was better to do it when I am “young” and healthy than to delay what was likely inevitable. Now that I am about 14-days post-surgery, I am totally convinced today that was the right decision.
Jan and I decided to keep the news and our decision to have surgery private and not initially share it with friends and family, including our adult daughters. This decision was made more complex because our younger daughter had just married a resident surgeon at Johns Hopkins University Hospital. Here, just a month after they married I was faced with a decision—should I tell our new son-in-law doctor about my MVP and ask for his help to get a second opinion at Hopkins, but ask him to keep the news secret from his new wife, or not ask for his help and disrespect him. We decided to ask for his help.
He passed my TEE results and diagnosis to a cardiologist at Hopkins, who confirmed the diagnosis and treatment plan. He respected our wishes and did not tell our daughter.
I decided to get some information from friends and others I was referred to who had open-heart surgery. I spoke to several who kindly shared their stories with me, both good and bad. Their shared experiences gave me some parameters for the range of experiences I would likely encounter, with each reminding me that everyone’s experience is different, depending on age, condition, health, and healing and pain tolerance.
Now it was decision time. When should I schedule the procedure? I am an avid golfer, so I didn’t want to screw up the whole summer, but I wanted to enjoy the Thanksgiving holiday on the east coast with my family. Jan and I met with Jeffrey Swanson, the cardiac surgeon who would perform the surgery. Jeff spent almost two hours with us during which he explained (probably for the ten-thousandth time for him) the anatomical and medical issues involved in MVP surgery and what he needed to do. He gave us a book to read and videos to watch.
Jeff told me to schedule another trip back to the hospital for an angiogram—to look for heart blockages. I understand the medical rationale is while the surgeon is in the neighborhood already working on my heart, he or she might as well fix everything that needed fixing. Procedurally, it was pretty much like the TEE—a couple of hours in the hospital, poked and injected, some sleep, and then it’s over. Good results—no blockages.
After consulting with Jan, we targeted mid-September to try to schedule the procedure. In mid-August, we called Jeff’s office and he was available for surgery on September 20, so we selected that date. The deal was sealed.
How did I cope with the waiting? I did OK. I decided not to learn any details about the upcoming surgery. I did not want to think about it, read about, or see any videos showing the procedure; denial seemed like a viable option. You just can’t unsee images or videos and can’t unread certain things. I tried to think of the process like an out of body experience. This surgery was something that would happen, but not necessarily to me.
One thing that did occur, and that I could not always manage, was my subconscious. Many nights my mind went to dark places about the surgery that I could not control. Sleep became labored, but I did not fear. I continued my daily workouts and weekend golfing, as I was not on any restrictions, but every funny feeling in my chest was scary. As time compressed to September 20th, I just wanted to get it done.
We told our daughters during their late August visit to Oregon. That was the most difficult and emotional thing to do. Having watched my parents grow old, I knew that as a child of almost any age, you view your parents as invincible. I personally found telling our children the reality of my vulnerability to be very difficult and painful.
Jan and I took a quick trip back east to see the girls about two weeks before surgery. First, two days in Baltimore to visit one and then up to New York City to visit the other. My brother and sister in law came down from Boston to NYC so we saw them as well. One friend joked the trip was my “farewell tour”. I assured her it was not, and it was not.
As the days before surgery went from ten down to five, and then down to one, it all became really real. I was about to have open-heart surgery—the full meal deal. I worked at the office though part of the Monday before the Wednesday surgery and then tried to shut down that part of my life.
Jan and I decided to continue to limit disclosure of the surgery. I had told some, but not all of my law partners; I told a few clients with whom I had a good personal relationship; I told a few family members, and we told some, but not all of our friends.
And we waited to tell them—until just a few days before surgery and only after we told our daughters. Why? Because I was able for the most part to control when I thought about the upcoming surgery. If we had told everyone, we would have to explain the surgery and then respond to his or her thoughtful good wishes. I feared that each time I would do so, it would make me think about the surgery---even when I wanted to suppress it. It turned to be a good choice. Jan and I privately handled the emotions, the fears, and all of the uncertainty, which allowed us to stay focused.
At the pre-op appointment the day before surgery, the nurses told us what to expect, went over some protocols and post-operative care issues. We also met with Physician Assistant, Gavin, who gave us some additional information to prepare us for what was to come tomorrow. As the reality of surgery was imminent, I asked Gavin for something to relax me, having read that it was common to get Xanax for relaxation the night before surgery. He checked with Jeff Swanson, who recommended an early evening couple of glasses of red wine instead. I welcomed that advice and followed it.
I got to sleep with the wine assist, but sleep was fitful and unpleasant. Jan and I shared lots of hugs, punctuated by shared fear, modified by genuine confidence the surgery will go well and that it would be behind me in a matter of hours.
Check in at the hospital was at 5:45 a.m. on September 20th. Quick shower at home at 5 a.m. with a special disinfectant soap and then off to the hospital. We check in at the Inpatient Rehabilitation Unit, also known as the “IRU” and walked with the receptionist to Room 2. There are two green bags for me to put in my clothing and a hospital gown for me to wear. The other instruction is on a note that read “lay on top of the sheet.” Contrary to my normal response, I do as instructed.
Soon, Collete arrives with a bag containing a clipper. She tells me “well, I guess we need to use the vacuum on you.” Soon, she shaves off all of my chest hair, and some other places I usually don’t shave. This was the first of many losses of pride to come. Having been shaved, the upcoming surgery becomes that much more real. Other nurses come in, ask me for what will be the first of dozens of times, what is my name and my birth date? What are you here for?
Later, I hear staff talking about “transport”. Shortly afterwards, a gurney arrives and I get up as instructed and lay on the gurney. It must have been a busy day because two other men lay in gurneys lined up, each with their spouse standing nearby, undoubtedly scared about what was to happen to their loved one.
Jan and I get about 60 seconds to say good-bye in a long hallway that bisects into a waiting room on one side, and the surgery area on the other side. We briefly kiss, I inappropriately say “see you on the other side”, and we hold hands for a few seconds. As I am wheeled down the last hundred feet or so to the surgery area, I think of our daughters and our son in law and my eyes tear. I get my composure and steel myself for what his about to happen.
They wheel me first into a large room with several discrete sections. The two other gurneys follow and stop in their respective section. Pairs of nurses in each section begin to ask the patients questions—name, date of birth, why are you here. A man in scrubs then approaches my gurney and he introduces himself as Steve Kelly, the anesthesiologist. We chat for a couple of minutes and I then see my surgeon, Jeff Swanson, walking towards me.
Jeff has a positive personality and an easygoing confidence. He confirms what he is going to do and reconfirms that if I need a replacement valve, I had selected the bovine valve, with a shorter life, rather than the lifetime mechanical valve for which I would need to take Coumadin for life. He says he will see me shortly and then departs.
Then things got weird. After Jeff leaves, I am talking to Steve Kelly when the next thing I know I am waking up from surgery. I have no memory of him saying, “count down from ten”, or “are you ready?” I don’t know what Steve gave me, but I was out---instantly. Whatever he did or whatever happened (perhaps retrograde amnesia), the pre-surgery moments were neither stressful nor part of my memory. That is perfectly OK with me.
My next sensation is regaining some sense of awareness in the Cardiac Intensive Care Unit (the “CIUC”). Because I had no memory of going under, and had been out for about seven or eight hours, I was completely disorientated as I began to start to wake up. When that first occurred, I consciously asked myself “am I dead or alive” and then, “has the surgery begun or was it over?” It was the strangest moment I can ever remember.
Upon awakening, I had a very uncomfortable breathing tube in my throat. I recall hearing members of the respiratory therapy team talking about removing the breathing tube in about “twenty minutes to an hour”. Although my arms were restrained, and I could not speak, apparently my middle finger worked well, so I did have a brief opportunity to express my displeasure at the delay to my nurse Michelle. On reflection, it was neither the kindest nor the smartest move. Sorry Michelle.
I stayed in CICU for about 24 hours while the nurses stabilized me, removed some tubes, carefully monitored my condition, checked the drainage tubes, gave me medication, and ensured my progress and recovery. I have very little memory of CICU other than constant poking, prodding, examination, and attention. I suspect this is because of the slow depletion of the anesthesia from my system and the shock my body had just suffered.
On Thursday afternoon, I moved from CICU to the Cardiac Care Floor—6 East. I was assisted into a wheelchair and off we went. Soon I was in room 629. The next 24 hours were the most difficult. The anesthesia was wearing off and the chest pain had become real. Moving and changing positions on the bed was difficult and painful. I was still catheterized, which was wonderful because I did not have to get out of bed to pee (all terms used here are common vernacular in the hospital even if not in regular company), but soon the nurse told me it was time to remove the catheter.
I am not a physician, but I know what a urethra is for. It has one job and one job only and does not welcome visitors. Hence, the removal process was no fun. It is fast, but it certainly burns. Then you wait. And wait. And wait to pee. The nurse asks frequently “do you need to pee?” “No, not really” I respond.
My nurse checks the fluid quantity in my bladder and announces I had better pee soon or she will put in another catheter. Having been reminded only a few hours earlier of the one-way street and single purpose of that part of my anatomy, I try to get going. Finally, I go and boy did it burn. But, the door was open and off I went.
Next problem—constipation. Pain medications cause constipation. It took a couple of days, different laxatives, and some more food and liquid, and then, finally, success. Because my nurse monitors urine quantity and my poop, I excitedly told her to come look; much like I must have done at 18 months old when I first used the toilet as I was getting weaned from diapers. Again, no pride.
My nurse tries to get me out of bed to walk the hospital floor. She reminds me to hold my “heart pillow” to my chest and “roll like a log” to get out of bed. It’s not easy or fun, but I get up and I am on my feet. I took my first walk around the floor on Thursday evening using a walker. Slow and steady wins the race. One lap and I was exhausted.
For the first 36 hours after leaving CICU, time moved glacially. I would nap for what I thought was two hours, only to awaken and discover I had been asleep for five minutes. This was the longest part of my hospital recovery.
Friday morning arrives and I am feeling better. My sleep was fitful and uneven, and not terribly restful. But as I awaken, I realize my head is clearer, my pain is less, and I am feeling stronger. I can communicate more clearly with my nurse and her assistant, and I am better able to comprehend what is going on around me.
I am still constantly getting tested, poked, and prodded. I get hourly finger pricks to check my insulin levels, blood checks every four hours or so, and a cocktail of pills in a paper cup to swallow every few hours. My nurse, Torrey, wants to get excess fluids out of my system, so he injects Lasik into my IV. He tells me that, Lasik coupled with the Flomax mediation are designed to allow me to urinate freely, will work quickly, and he encourages me to be ready to race to the bathroom.
He was right. It was like the fictional childhood book “Run to the Bathroom” by Willie Makeit and illustrated by Betty Wont. No joke. Once the Lasik takes hold in about 20 minutes, it’s time to go. And I did. It was as if I had no sense of control—it just flowed as if a spigot in the bottom of a full barrel was open and broken. I seemed to continue until I was empty.
My appetite was starting to come back--very slowly. I recall my first meal when I got out of CICU was some turkey and potatoes. I did not have the strength to cut the meat. I felt like Howard Walowitz on the Big Bang Theory, whose mother supposedly cut his food for him. After my food was cut, I took a couple of bites and was done. Now, a day later, I was eating chicken sandwiches, and even part of a pizza.
My strength seems to be returning. I am getting antsy and want to move. Friday afternoon, I took my walker on a couple of longer laps around the floor to help inspire me. More blood tests, another dose of Lasik (and a race to the bathroom), and more sitting around waiting to feel better.
Friday night’s sleep was not good. It was difficult to find a comfortable position in the hospital bed. Also, plenty of nurse visits, blood tests, finger pricks to check insulin levels, and the like.
French toast for breakfast on Saturday. Gavin, my PA, tells me I should be able to leave the hospital on Sunday. Seemed kinda quick all things considered, so I said, “we’ll see.” I was feeling way better than the day before, but was still not sure about pain management and not knowing that help would be on the way in just a minute from a skilled professional staff if I needed it.
I decided to get moving. I picked up my walker and did seven longer laps around the floor. Felt good. Still taking a variety of meds, including Lasik and Flomax, plus getting shots of heparin in my stomach. I watched some college football on the 1980 era ceiling mounted television and killed time reading. Had pizza for dinner and then more tests, pills, and pokes.
Sunday arrived. French toast again for breakfast. It was pretty tasty. More testing and questioning about whether I feel I can go home. Sounded like it was time to go.
I said OK, let’s do it. The discharge process began. First thing is to get clearance to remove the heart monitor and alarm that had been in my chest since the surgery had ended. Once my nurse got the approval, my nurse removed the two probes and I was officially untethered and technologically free.
Next is the PA’s physical examination to be sure I am good to go. Cleared. You want to hear words like “sounds great”, “good numbers”, “you’re good to go”. I heard them all and I was ready to make the leap and go home.
It takes some time to process the hospital discharge. I am sure there is a lot of paperwork behind the scenes, checks and double checks, confirmations, and approvals. We also meet with an occupational therapist to be sure I can handle stairs properly and other realities of recuperating at home. I also get some more tips on putting on and removing shirts, pants, and shoes so I can be independent and comply with the sternal precautions.
We get a quick lunch (pizza) delivered and shortly afterwards, it’s time to go. My nurse asks if I want a wheelchair to exit the hospital. I refused and walked on my own power with the love, strength, and encouragement of Jan, our daughters, son-in-law, and friends.
Walking into our house was a treat. Home at last. The steps to our upstairs bedroom suddenly seemed steep, and they were. My first walk up the stairs was exhausting. We settled into the new protocol. We were on our own.
Each day at home was better than the one before. I walked around the neighborhood. Napped often and walked when I wanted. I use my Fitbit to compare my steps, calories, and flights each day to measure my progress. Progress was slow but steady for the first few days. I didn’t expect anything spectacular, but I was very pleased. Pain was very minor; I was off the Oxy in a couple of days and just relied on Tylenol. I started checking emails from work and reengaging with the world after only a few days at home.
Now, I am 14-days post-surgery. I can walk more than 2-miles at a time including hills. I try to adhere to the sternal precautions to protect myself and ensure my recovery. My wind is stronger and my energy better each day. I am planning to go to the office and start working part time.
Things are getting better each day. The wounds are starting to itch and I am getting stronger daily. I can’t believe that just 14-days ago I was being filleted on an operating table with my heart and lungs attached to a machine while someone fiddled around with my heart. I am even annoying Jan, who has been a wonderful wife and friend for whom I cannot be more grateful. That is progress.
Quick update—day 28 post-surgery. Walking nearly 3 miles at a time and nearly 7 miles a day. Started cardiac rehab at the hospital. Going to the office 4+ hours a day. Little to no pain. Feeling great. Can’t believe it.
Last update—12 weeks post-surgery. Finished cardiac rehab early. Back to the gym daily doing more cardio than pre-surgery. Working on building back muscle and my abs. Ready to play golf again.
Life is wonderful. I feel great and looking forward to many good years to come.
That’s my story so far. But, as they say on TV, “wait, there’s more”.
First. Love. I would not be here without the love and support of my wife Jan, our daughters, our son-in law, the rest of our family, and close friends. They were all there for me. Love is empowering.
Second, the medical staff. Jeff Swanson seems to have done the job for me. Ty Gluckman, my cardiologist, diagnosed my condition and help motivate me. I had great nurses in the hospital, especially Katarina, Ofelia, and Torrey. Michael, my CNA was terrific, as were the other staff members. Thank you all.
Third, what to bring to the hospital. A bathrobe (hides your butt when you walk the halls in your hospital gown to retain what little pride you have left), earplugs (I recommend Hearos #33), a good traveler’s eyeshade, IPad, and if you want to use the internet, a hotspot. Hospitals are incredibly noisy and bright. Day is night and night is day. Whether you are being awoken for a test or meds, or loudspeakers blear in the hallway, sleep is a challenge. Do what you can to give yourself the best chance to rest.
Fourth, meds. Get used to taking lots of meds. Different color and sized pills, shots into my stomach, and all sorts of IV meds. Be sure to ask what you are getting and why. If something doesn’t sound right, ask. As good as the nurses may be, mistakes happen. You, or your patient advocate, are the last line of defense.
Fifth, bring kindness, humility, and appreciation. The medical staff members are each professionals and they are there for you. That said, they are humans with names, lives, families, and their own stories. Each wears a name badge with their name prominently displayed. Don’t say “hey nurse”. He or she has a name and you should use it and respect them for their training and their work. Ask about them. Get to know them. To a person, mine all wanted to share something about him or herself when I asked. It made for a far better personal relationship that I am sure enhanced my care and made the hospital and initial healing experience that much better.
Sixth, home. It’s great to get home. Prepare your house in advance. Here are a few thoughts that we found so helpful. One, rent a fully reclining electronic lift chair. Yes, the one’s that push you forward to stand up and that lay back almost horizontally. They make it so much easier to stand up particularly given the limitations on using your arms to get up from a seated position. For me, it is difficult to sleep flat on my back (I am a side sleeper) so with lift chair I could sleep with my head elevated and otherwise sleep flat.
Also, get a toilet riser. No reason to sit too deeply on a regular toilet seat when you can sit up higher. Makes life easier. Trust me.
Next, wear loose clothing. Because of the sternal precautions, I found putting on loose fitting shirts and sweatpants made dressing so much easier.
I was surprised that showering initially turned out to be one of the more exhausting experiences. Because of the sternal precautions, showering is awkward, and drying off as I had done in the past is not possible. It is a two-person operation. It gets better with time and later, showering with the water running on the scar, feels great.
Be sure to prepare in advance for surgery by working your abs and legs and strengthening them. You need them all to help you get up from bed and from chairs and to comply with the sternal precautions to help you heal properly.
Some of the best advice I received came from a friend who had open-heart surgery some 35 years earlier. He said “I won’t visit you because hospitals are for healing, not socializing”. Based on that advice I put a “no visitors” sign on my door so that I could begin my recuperation without distractions. He also said to be confident; the surgery may be unique in my life’s experience, but it is what the doctors and the medical staff do each day.
I am not sure what more I can tell you. The pain from the get go was far less that I imagined and feared. The meds and the healing process taken together helped manage the pain well (except when sneezing which is its own special treat). Don’t fear the pain.
Enough writing. If anyone would like to discuss the procedure, the recovery, or wants to just talk, please email me at email@example.com and we can schedule a time. Please feel free.
Good luck to you all. Honestly, it is not as bad as you may fear and the surgery might save your life.
© Howard M. Levine 2018