George's Journal
Mitral Regurgitation, Joined January 4, 2021
Mitral Regurgitation
Joined January 4, 2021
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I am from: Butler -
My surgery date is: November 18, 2021
November 24, 2021
I will try here to document my experience in getting 2 valves repaired by Dr. Gillinov at the Cleveland Clinic. This is being generated after the fact based on my best memory. I will try to focus on the CC experience more than on my own story; my details are probably not going to help anyone get through this. I will likely express some personal opinions that I in no way believe are universal, so please ignore these. I am hoping that some of what I will write here will permit others who are about to go through this feel more confident and less apprehensive. At the same time I realize that everyone’s personal experience is unique and I’ll do my best to not project mine as the norm. I am a terrible pessimist by nature and I expected the worst with respect to how I would feel after the surgery. I have been very pleasantly surprised at how well I felt at every step of the way, but please don’t think that if you don’t have the same result that you have somehow failed. As all the others have said before, this is a highly personal experience and everyone will not the same result. The experiences that others have written on this site were incredibly comforting and valuable to me as I prepared for this for over 18 months. I had the luxury of time to get as informed as I think I could have been with both the good and the bad. I really hope this helps even just one person feel less anxiety.
As the tale grows i’ll add sections. Please add your comments / questions at the end. Thanks
I’d first like to recognize how much I owe to my lovely wife of 45 years for supporting me through this voyage. It would be unfathomable to think ... Read more
I’d first like to recognize how much I owe to my lovely wife of 45 years for supporting me through this voyage. It would be unfathomable to think of living through this without her love and help.
This is a short summary of my medical history prior to finding out I needed valve surgery. Wait for it... . There, that was it. I never had ... Read more
This is a short summary of my medical history prior to finding out I needed valve surgery. Wait for it... . There, that was it. I never had a PCP, any physicals I ever had were required very infrequently by my employers and were very cursory. I had ZERO experience with doctors other than a few minor sinus infections, and once I contracted salmonella after a trip to Japan. I had never been hospitalized or injured in any way. Any minor illness I contracted I would wait out. Time generally resolved the issue. I had been aware of having a murmur but ignored it. The details that follow are uninteresting except that they lead to a major disappointment when I got to the CC that turned into a blessing in a bad disguise.
In late 2019, just after retiring, I started to suffer vicious flu-like symptoms which included night sweats, fevers, coughing, severe chills. Without a PCP, I again decided to wait it out. I developed severe back pain early in 2020 and subsequently had what I later guessed was a brief (45 minute) TIA. I made an appointment with a PCP but had to wait almost two months to be “seen” (all telemedicine due to Covid). The brief PCP interaction resulted in a blood workup that identified iron-deficiency anemia and some vitamin deficiencies. An MRI was performed to look for back issues. The main recommendation to come out of this was to get a colonoscopy.
In mid-May I developed abdominal pain so severe that I drove myself to the ER. I was admitted and during the diagnosis process had an enormous number of blood test, xrays, CAT scans, EKGs, and ultrasounds, including a TEE. The diagnosis was an infarcted spleen, infective endocarditis (IE) with severe mitral valve regurgitation and prolapse (flail leaflet and broken chordae), a systemic staph infection that had spread to my lumbar spine, and pneumonia. The cardiac surgery group at our local hospital (a very good one, I must add) were pushing for me to get immediate valve replacement due to the IE.
25 gallons of IV antibiotics and a splenectomy returned me to polite society, followed by 6 weeks of home daily IV antibiotics. I will be very grateful to my infectious disease doctor forever for recommending that I allow her to resolve the infections prior to proceeding with surgery.
At the subsequent meeting with the cardiac surgeon, I was practically scheduled for a replacement on the spot. The few weeks I had during IV therapy allowed me to research the issue and of course information on Adam’s site convinced me that a replacement would be a better choice. The local surgeon referred me to a Pittsburgh surgeon who did repairs. I met with him in August of 2020, had additional imaging, and he said that he thought that he could do a repair (>85% probability). I had hoped for minimally-invasive robotic surgery, which he performs regularly, but because of plaques in my aorta he said I should have a conventional sternotomy. Disappointed, I continued to look for options.
I continued with 6-month checkups with a local cardiologist. This doctor, while I am sure he was technically excellent, would not answer questions nor give me advice about how/when to proceed. He was adamant that my heart didn’t require surgery, but he would not tell me why. I am a trained scientist/engineer by profession and I rely on data. I analyzed my multiple echocardiogram results and I could see that things were getting worse. I was totally asymptomatic, but I was worried about impending permanent damage. My left atrium was severely enlarged and other valves were beginning to leak. For example, I saw in what was the most recent echo results of the time that the calculated regurgitant fraction was 76%. I looked that up and I couldn’t understand how my heart could be so bad and I was still asymptomatic. My cardiologist, during a 10 minute hit-and-run appointment, answered “It would take me too long to explain it to you”. I found a different old-school cardiologist in Pittsburgh who spent the better part of an hour talking to us. He recommended I get the valve repaired before the deterioration worsened. As a side note, my new cardiologist said the regurgitant fraction number must be a mistake.
Since I am relatively close to the CC (two hours by car) that seemed like a good option. Dr. Gillinov stands out as the perfect surgeon to undertake this. I forwarded all the information on my previous testing to CC and his practice nurse contacted me and told me in early 2021 that he (Gillinov) felt he had a 95% chance of repair using robotic minimally-invasive surgery. Thrilled, I booked a surgical appointment for May of 2021. We traveled to California to visit our son for the month of April, and during that trip I developed what looked to me like a badly decayed tooth. Because of the dental clearance requirement and the small window of time between our return to PA from CA before the surgery, I did not think it was wise to proceed with the surgery, so I cancelled. On returning to PA, the decay I saw was determined to be a stain and of no consequence, but it was too late to reschedule. When I called the CC in July or August to rebook, the next available date was November 18th.
I had three primary goals for the surgery. 1 – get a repair rather than a replacement; 2 – get the repair performed by minimally invasive robot surgery for faster recovery; and 3 – avoid CABG. At this point during the summer I had not yet been catheterized so I had no idea if this was to be isolated mitral valve repair or repair+CABG.
I booked the appointment for the surgery and a few weeks before the date I received a package from the CC with the day-by-day schedule. ... Read more
I booked the appointment for the surgery and a few weeks before the date I received a package from the CC with the day-by-day schedule. The pre-surgery testing and appointments were spread over the three days prior to the surgery date. In my case, I was to arrive on Monday November 15th for the start of outpatient testing. My wife, my son (who flew in from CA to help), and myself traveled to Cleveland on the 14th and moved into an AirBnB. Monday morning we went to the CC for the first time.
Day 1 (Monday). Arrived early. My first appointment was 10 AM. Let me say that if you are not familiar with Cleveland and the CC, it is a sizeable city and the CC itself is industrial medicine on a scale with which I was not familiar. I grew up in Philadelphia, so I was not unfamiliar with “Big-City” things, but my only exposure to the medical establishment was at the local (but excellent) hospital in the small town we now live in near Pittsburgh. To give you the perspective, last year, due to the Covid pandemic, I was admitted to a hospital that was nearly empty except for a few cardiac and Covid patients. I was in the Cardiac wing as were the Covid patients. I was supposedly on a “heart-healthy diet”. But, during the evening, a nurse would knock on the door and stick her head in and say “Hey George – do you want some pizza?”. Donuts were also apparently not prohibited. This area has a large percentage of the population that makes friends quickly and doesn’t take rules as inviolate. The CC bears no resemblance to my local hospital in that regard.
The feel of the Clinic on arrival is a lot like visiting the UN in New York. Huge, semicircular building, gleaming modern feel, circular driveway around a fountain, and thousands of people. Crowded in the extreme. It is a city in itself. The circular driveway area in front was a madhouse of cars, buses, and shuttles dropping off and picking up passengers. However they do have valet parking a reasonable rates. Since I was ambulatory, we entered the parking garage and wound our way to the 5th level before we could get a spot. You can walk to the clinic using an underground passageway to avoid the cold. For those of you going in January, you will need it. Cleveland, I think, may be one of the worse places in the country in the Winter. I don’t mean to offend anyone. Seriously. But it is.
Because of Covid precautions you can only take one visitor, and that visitor is the ONLY person who will allowed in the building during your stay. Masks are mandatory for all and they take it very seriously. There will be an exception for the patient when in ICU and the step-down unit, but not for when the patient is in the hallways or is being moved. The restriction on visitors may change with time, but that is what it is now.
We entered the main lobby and had to answer standard Covid questions. Then we were released to enter. There are red-coated guides who can direct you to where you are going. They are polite but not necessarily always accurate.
We had some time to kill so we toured the lobby. As I said, it is a small city. There are several food service establishments on the first floor including Starbucks, Panera Bread, and Aladdin’s. If you aren’t from this area, Alladdin’s is a small (5 restaurants, I think) Western PA/Eastern Ohio Middle East Restaurant chain. We like it a lot – many excellent vegetarian choices, excellent hummus, good kebab, etc. These establishments are EXTREMELY busy. Half-hour wait or more is highly likely. There is also a cafeteria with a wide selection. Wait times in the cafeteria were much less than at the name-brand establishments. Your visitor will be well provided for during down times and wait times.
The Miller Pavillion seems to be designated as Building J. The 1 is the first floor, etc.. All the J1 desks are at lobby level.
Here was my test schedule for the first day (Monday)
10:00 AM Lab Visit – Desk J1-4
10:15 AM – EKG – Desk J1-4
10:30 AM – Xray – Desk J1-4
11:00 AM – Echocardiogram Desk JB-2 (Basement)
12:15 PM – Cardiology consultation Desk J2-4 (second floor)
2:15 PM – CT scan Desk J1-4
3:30 PM – Covid test MN “P” Building (the only test that was in a different building).
The test sign-in desks were crowded areas but efficiently managed. Covid spacing is maintained. You give them your name and date of birth, ... Read more
The test sign-in desks were crowded areas but efficiently managed. Covid spacing is maintained. You give them your name and date of birth, and that unlocks the process. Insurance cards and IDs are requested. I signed up for the “MyChart” phone application. If you do, it will give you easy access to all your appointments, instructions, and test results. Also the MyChart will give you the ability to upload information that will expedite the registration process including uploading a copy of your ID, insurance card, enable co-pay (if required) in advance, etc. It will remind you of upcoming appointments. You can get MyChart loaded up before you leave for Cleveland.
The testing was unremarkable. Lab tests were only a blood draw. EKG was quick as was the Xray. The echocardiogram was longer of course. The CT scan was fairly quick but it required the injection of contrast via IV. Everyone was extremely professional and efficient. Maybe a touch on the cold side, but that is only my perception. I viewed it as another manifestation of the Corporate Medical Culture. As long as they know what they are doing, I don’t need more friends. At each test they will direct you to the next after reviewing your schedule on-line. In the case of the Covid test, that required them providing me with detailed step-by-step directions that allowed us to get the remote building without having to go outside. The schedule was somewhat notional in that the tests were not necessarily performed strictly in order.
One note about the Covid test – I was tested early in the pandemic during my first admission to the hospital early in 2020. In that test they insisted in not only probing my nose back to the skull, but also the nose of the guy in back of me at the same time. I was NOT looking forward to another one. At this one the administering nurse barely put the swab into my nostril, twirled it around, and did the other nostril. I asked how come they didn’t probe my brain like last year. She said they discovered that they don’t need to do that anymore. Praise be. So – don’t sweat the Covid test.
While the testing is going on, you will receive the test results via MyChart as they are completed.
The meeting with the Cardiologist was somewhat perfunctory. You will learn the meaning of the title “Fellow”. The Fellow is a fully-accredited doctor who is nearing completion of the training to be a (fill in the blank/specialty; CC is a teaching hospital). They are a little like the understudy. We met with a very nice Fellow who went over our test results (EKG and Echo) and she offered to answer questions. Then the Official Cardiologist (named in the appointment came in) and offered to answer the rest of our questions. This seemed to me to be more of a pro-forma consultation. As he said, I was already on the Cleveland Clinic Conveyer Belt, so it was a little beyond asking questions about whether or not the surgery was the right path for me. That said, he graciously answered my questions about whether the right thing for me (being asymptomatic) was early surgery and what the trajectory of my life would be like without the repair. I was reassured by the information we got.
I found nearly everyone I dealt with at the CC to be professional and beyond competent, but the younger ones, especially, seemed to be very sweet (if not personable), but over-anxious to please and extremely determined to not say anything that could be remotely off-base or offensive in any way. They also seemed less compassionate and empathetic; I chalk this up to inexperience.
Day 2 was primarily dedicated to the heart catheterization. You first have to go to Admitting (Desk J1-1) as it seems like the CC views this ... Read more
Day 2 was primarily dedicated to the heart catheterization. You first have to go to Admitting (Desk J1-1) as it seems like the CC views this as an in-patient procedure. The admitting procedure was brief and mostly consisted of verifying insurance information and identification. I asked if this admission would also cover my hospital admission on Thursday. Apparently it did not, but they were willing to check the additional boxes so that I wouldn’t have to repeat this step on the day of the surgery.
The catheterization test was not definitively scheduled until the day before. We got a call from the Scheduling Nurse late in the afternoon of the day before and she provided the time we needed to arrive. She also gave us the preparation instructions, which mostly consisted of not eating or drinking after midnight the night before test. Small amounts of water allowed for taking any necessary medications.
The process of catheterization was not at all uncomfortable or painful. A nurse retrieved me from the waiting area and I prepared by disrobing and getting into a hospital gown. A nurse then shaved my right wrist and a little of my groin area. The assistants told me that the doctor performing the procedure prefers to attempt the catheterization through the wrist if possible. If that doesn’t work, they will pick up an artery in the groin.
A bunch of questions, then as some point I got an IV port in my arm. When they were ready for the procedure, I was wheeled into a room that contained a large machine that was capable of positioning the X-ray source and detector at any position and orientation. It appeared to me that the X-ray source was below the table and the detector above. They administered a tranquilizing drug that I didn’t feel, but I don’t recall be anxious about anything either. They next said they were injecting a numbing agent (something like lidocaine) in my wrist so that they could insert a catheter in my wrist artery. The insertion was painless. They next thread a wire into your arm and snake it up into your chest. You will feel nothing. They can watch the location of the end of the wire on a screen. They snake a tube over the wire, thus positioning the tube in the right place so that when they inject a dye, the dye immediately gets distributed through the coronary arteries. Over the next few minutes they apparently injected dye and filmed how the dye went through the coronary arteries via X-rays. From multiple images they can deduce how blocked the arteries are. If seems like the whole thing barely lasted 15 minutes. They immediately told me the results (in my case, nothing that needed bypass). BIG relief. They then pulled the tube out my wrist, applied a pressure bandage, and I was whisked off to the recovery area. They want to monitor you for a few hours afterwards to be sure you don’t react to the dye and that the arterial catheter site doesn’t start to bleed. If by some chance they have to revert to the groin, you will need to stay horizontal for an additional hour or two as apparently the groin insertion point may require more time before the threat of arterial bleeding passes.
Later I was told the detail. I had no blockages requiring bypass, I did have some diffuse calcifications. One of my arteries, the Left Anterior Descending Artery (LAD – the so called Widow Maker) was 40% obstructed (70% is the action level for bypass). I later told my wife that she could wear black either on the top or the bottom, but not with black shoes. She was not greatly amused.
After the procedure, I was immediately given water and some crackers as I had eaten nothing since the night before. I was also handed a room-service menu and I could order anything I wanted for lunch. I ordered lunch and while it was not award-winning, it was completely passable. I thought about the dramatic gleaming building, the circular driveway entrance with the fountain, the valet parking, the impressive lobby, and the room service menu. I considered mentioning that I felt that small-plot Sonoma vintners were under-represented on the wine list, but I decided that my complaint would fall on confused ears and after all, it is a matter of personal taste. That was the only test scheduled for Day 2.
Testing Day 3 – Office Visits
The third day of pre-admission testing involved meeting with Dr. Gillinov’s nurse, Anesthesiology, and Dr. Gillinov himself. I don’t now recall the actual order in which these occurred, but I think we first met with Dr. Gillinov’s nurse. We got some preliminary instructions about preparation for the surgery. She performed a nose swab on me to test for MRSA; but, she said that the test was unlikely to be complete by the next morning, so she gave me an ointment that was the treatment for nasal MRSA. I was to swab my nostrils with it immediately, later that evening, and the following morning before surgery. I was also given a bottle of antibiotic body wash (Hibiclens) that I was also supposed to use that evening and the following morning in the shower.
I believe the next office visit was with Anesthesia. They termed it the Anesthesia Clearance. Questions about what if any drugs I was using or allergic to, etc. A very nice Anesthesia Fellow explained the whole processes that they would use for induction prior to surgery. All our questions were answered.
Dr. Gillinov came into the room and immediately went over my test results. He was extraordinarily business-like and he radiated confidence and expertise. He went over all the relevant details in less than 15 minutes with the skill of someone who has done it a thousand times. Good news – no bypass would be required, so the procedure would be isolated mitral valve repair. Less good news – the evidence showed the distinct possibility that a replacement may be needed if, once he was inside, the damage from the IE exceeded what he could repair. He reduced the likelihood of repair from high 90’s to about 70-80%. Worst news – the calcifications in my aorta were too great to permit minimally-invasive surgery. I felt rather shattered at the news. One of my primary goals (repair) was less likely, and a second (minimally-invasive surgery) was off the table. At that moment I felt a little like I had been the victim of a bait-and-switch. More than a year before I could have gotten a conventional sternotomy and an 80% chance of a repair within 30 miles of where we live. I mumbled through the discussion of my choice for replacement valve if that was necessary. I realize that that conversation was going to be necessary in any event, but I did leave the meeting feeling very down about the path I was on.
I asked about breathing tube removal. I have a thing about choking. Last year I had surgery but the tube was removed long before I became conscious so I have no memory of it. I knew that this time there was a good chance I would by quite awake with the tube in my throat. Dr. Gillinov explained that it was likely I would remember it, but the procedure they would use was to bring you up to a level on consciousness that would allow them to assess your responsiveness and ability to breath on your own. They would then remove the tube and gently let you glide back under the surface. I could expect to be quite sedated.
The surgery was to be the following morning (Day 4 – Thursday). The scheduling nurse said to arrive by 5:00 AM. Dr. Gillinov nurse said he prefers to get his “easy” surgeries out of the way early in the morning and put off the complicated cases for later in the day. That inspired some confidence, but I was still crestfallen.
Again, I used the MRSA ointment in my nose right after we returned to the Air BnB. I got a message through the MyChart app that lead me to the ... Read more
Again, I used the MRSA ointment in my nose right after we returned to the Air BnB. I got a message through the MyChart app that lead me to the MRSA test results. I was negative, so the duty nurse I called said I did not have to use the ointment. No eating or drinking after midnight the night before, except for clear liquids and what I needed to take medication. I actually was able to sleep from about 11 to 3 AM the night before.
Up early, shower with Hibiclense, and off to the Clinic. Directly to the surgery admission desk on the first floor. They have a decent waiting area where we sat for maybe 15-20 minutes. A nurse came in to lead me to the surgery prep area. There I was instructed to removal all my clothing and to put on a hospital gown. I bagged up all my clothes for my wife to take away. They don’t want you to have anything with you, including a cell phone. Once on the gurney a nurse came in to prep me for surgery. That consisted mainly of shaving my chest (a 1 minute task). I had read that I would get shave from neck to knees, but that did not happen. After the chest, the rolled back the blanket to get to my groin area and saw what had already been clipped for the catheterization. Apparently that was sufficient and the clipping ended. They then got my wife from the waiting room so we could talk for a bit prior to the procedure.
After maybe a half hour the whisked me to a different floor and put me in the waiting area for surgery. Not much happened here. They provided me with blankets and checked to see if I needed anything. When the OR was ready, they wheeled me to a hallway outside the OR and parked my bed. The cold air coming from the door to the OR was astonishing. An OR nurse came out to check on me and asked if I needed more blankets. I said I did and that marvelous person got me TWO heated blankets. It was wonderful. The head anesthesiologist came out and introduced himself to me. Turns out he owns a house in the Pittsburgh area and he was familiar with where I live. Nice guy, warm and sensitive. He gave me a sense of confidence.
Another OR nurse came out to introduce herself. I don’t recall if she said she was a doctor or not – she only used her first name. Let’s call her the Phlebotomist. She explained that once inside she would be starting an IV line and setting up an arterial line. The arterial line (in my arm) would allow quick access for infusing drugs but also provided real-time blood pressure information. After I was under the anesthesia they would introduce the neck line. Another warm, caring person that inspired confidence and allayed fears.
A little bit more time and they wheeled me into the OR. I had never seen one in person as I was not conscious for my last surgery. It was a disorienting experience. There must have been about 8 people scurrying around, preparing instruments and equipment, etc. The operating table looked like a board about 8 inches wide (it was probably wider). The lights above the table were un-worldly. I recently saw a movie-poster type advertisement for a science-fiction film that showed a woman, suspended in mid-air under a sheet beneath bright lights that appeared to be mounted to the bottom of a spaceship. Standard Alien abduction trope. They helped me move over to the plank where I was strapped down. A small board that protruded from the left side was for my arm, to which it was strapped. The Phlebotomist started by inserting an IV in my lower arm, then injected a numbing agent near my elbow for the arterial line. She inserted the arterial line. Not long after that Dr. Gillinov entered the OR, introduced himself, and had what they called a Safety Meeting. Not long after that my lights went out, and hard. After the fact I learned that one of Dr. Gillinov’s Fellows (a fully-accredited surgeon) and a student do the opening and the prep work including the cannulization required for the heart-lung machine. Dr. Gillinov then swoops in to do the tough part on the valve, they test the results and review the functioning via TEE, then he departs and his seconds close up and tidy up. In my case the opening started abound 8:00 AM and they closed and finished by 11:30. Then off to CVICU (Cardio Vascular Intensive Care Unit).
My wife was informed by text of the time of the start of surgery, the completion time of the on-pump portion, and the time to meet with the surgeon. She said Dr Gillinov was thrilled with what we was able to accomplish with the removal of the tissue damaged by IE, adding new chords, and the repairs with annuloplasty.
ICU
Everyone has said that time doesn’t pass during surgery. That is true for me as well. However, my first conscious memory is waking up with the tube in my throat. Luckily I didn’t panic. I had found a terrific YouTube video entitled “Video 3 of 4 – What to expect as you are waking up from your OHS”. The source is “A Heartbeat Away 4U”. The presenter is a doctor who has also experienced OHS. I can’t recommend it enough. He describes how you will likely feel with the tube in your throat but he is very reassuring that you won’t suffocate or strangle. He recommends internalizing before you go under that you just need to relax and allow the machine to breathe for you. It was excellent advice. The only problem I had was that I wanted to cough badly and of course I couldn’t cough around the tube. I think I convulsed a few times, but if I had to guess I was awake for maybe 15 minutes or so with the tube in my throat. Long enough to be able to tell myself “Huh. I guess I survived this and they finished the surgery.” After a short time the staff came over (I think it was about 4:30 Thursday afternoon) and told me they would remove the tube and that I needed to cough while they did. I gladly complied and out it came. Again, pure bliss. No pain on removal. I never developed a sore throat. I can’t say that the experience of the breathing tube matched my hopes based on Dr. Gillinov’s description, but I can also say it wasn’t nearly as bad as I expected. My wife had apparently come to see me shortly after I got out to the ICU and she said my color looked good. She said she talked to me but I have no memory of hearing her and I did not respond.
I can reassure you that I felt ZERO pain or discomfort when I awoke. Or, for that matter, I felt nothing I would call pain much at all in the ICU. They are masters of pain management. I slept fairly well on-and-off for Thursday afternoon and evening. They asked frequently for my assessment of my level of pain. I don’t think I ever said anything over a 4. My personal criteria is that if I can sleep through it, it ain’t that bad. They also repeatedly ask you where you are and what day or year it is. I believe this is a Stroke Early Detection strategy. I actually got fairly good sleep that night.
The ICU is a bright, noisy, busy place. You can ask for the lights to be turned down at night. At CC the rooms they put you in are open-ended – that is, where the wall to the hall would be is a curtain. I was wired up with EKG leads, the neck line was still in, I had at least one or two IV lines, two chest tubes, and a Foley catheter. I was quite relaxed and discomfort-free. I asked the ICU nurse what the outcome of the surgery was (other than the obvious one). She said “Didn’t they tell you? They successfully repaired two valves”. I was relieved but the significance did not sink in for a time. I’m not sure it has yet. Apparently after entry Dr. Gillinov was able to cut some diseased pieces off my mitral leaflet, fashion a functional one, add some Goretex cords, and create a ZERO-LEAKAGE mitral valve. Add the annuloplasty ring and Bob’s your Uncle. However, he saw regurgitation from the tricuspid valve in excess of what they were expecting. The best I can determine is that the stretching the ever-enlarging heart was experiencing opened up the tricuspid valve to the point it wasn’t holding pressure. So he added an annuloplasty ring to it too. The significance of this is if he had attempted a robotic, minimally invasive repair, he would not have been able to do the tricuspid valve. So, I got a Twofer. The mitral valve went from a 3+ to a 0, and the tricuspid valve from something like a 2+ to -1+, which is essentially trace leakage. I am now grateful that he could not do the work robotically.
Taking inventory in the ICU: I had, I believe, one or more IV lines in one arm, a neck catheter, an arterial line in the other arm, a nose cannula for oxygen, two chest tubes, and a Foley catheter. About 8 wires for the hard-wired EKC monitor – you don’t switch over to the wireless variety until you are in step-down. The arterial catheter in my arm seemed to be primarily for monitoring blood pressure directly. I also had a blood pressure cuff. It would inflate automatically about every ½ hour or so. I found this to be the most annoying. Just when you’d go to sleep, the BP cuff would pump up. The noise was not too bad – nothing that kept me from sleeping. I consider myself lucky in that the chest tubes never bothered me much. The nurses are never far away and they continuously monitor your condition. If the nose cannula slips out, it is never more than a minute or two before they are back to adjust it. As soon as you are coherent they give you the control to the pain medication pump. It is a button you can press up to 10 times an hour (and no more often than every 6 minutes) to get a little shot of narcotic pain relief. I don’t think I ever hit it more than 3 times in any one hour and often not at all. I found that when I did, the tendency to fall back to sleep was even greater than it already was. I tended to use it right after my bouts of nausea. Oh, and an oxygenation monitor – the kind that goes on the end of your finger. One last item - pneumatic compression sleeves on my legs. Theses went over both lower legs and periodically inflated to keep, I imagine, the blood from pooling/clotting in my legs. I enjoyed them. I may see if I can find a set for home use. These are replaced by compression stockings in the ICU. At one point I looked at the red light on my finger, my pencil neck, and my numerous wrinkles and bags on my face, and it occurred to me that I looked like ET’s stunt double. I’m sure it is not an original thought, but I laughed anyway.
I should mention the kazoo. I remembered all the discussion by previous patients on the Heart-Valve-Surgery website about the incentive spirometers. In the ICU I was given what looked like my very own, personalized, very expensive-looking kazoo. The version that CC uses does not measure the volume of your breathing; rather you blow into the device and a check valve opens when the pressure reaches a certain level. The back pressure is adjustable. The concept is that during surgery they deflate your lungs so that they can get better access to your heart. Because the lung lining is sticky, some of the air sacks do not all re-inflate completely. So, blowing against the check valve in the device (which is called a Positive Expiratory Pressure Device) causes back-pressure in the lungs to pop open the collapsed sacs, thus helping to avoid pneumonia. Kind of like when you pinch off the wrist on a rubber glove, squeeze it, and the fingers pop out. A respiratory therapist came through the ICU with some frequency to remind me to use it. The recommendation is to use it once per hour for 10 breaths. It was not at all strenuous to use. I am continuing to use it since I have been home. I suggested to the night nurse that they should actually add the capability of making the kazoo noise when they are in use. I thought it would incentivize people to use it, plus we could have inter-hospital ICU kazoo band competitions. He looked at me with a straight face and said “That is a terrible idea.”
A word about the neck line (for those who are worried about it): they insert the neck line after anesthesia is administered. There is no pain associated with it. Removal is totally painless as well. For me the worst part is removing the tape of the dressing around the entry point. I am not used to waxing my neck. I realize I will get no sympathy from the ladies, but there it is. Most of the first afternoon in the ICU I spent sleeping.
The day after the surgery I woke up feeling pretty good. No significant pain that I can recall. Not even very parched, either. I was still ... Read more
The day after the surgery I woke up feeling pretty good. No significant pain that I can recall. Not even very parched, either. I was still not yet allowed water or ice chips. I still didn’t have a phone so I couldn’t call my wife. They would not call her for me or get me a phone either so I had to wait it out. I think later that morning they brought a liquid-only tray – fruit drink, cranberry drink, broth. Sometime that day they got me up and into the chair. I didn’t have any trouble moving to the edge of the bed and standing up. I fell asleep in the chair immediately.
The little bit of liquid I sampled came back up within an hour of trying to drink. This persisted into Saturday. I later spoke to the doctors about it. They said they had no idea why some people have nausea and others don’t. I did and I can’t say it was pleasant.
Sometime during the day the first chest tube was removed. Relatively painless until the last inch passed through the chest wall. Discomfort was brief. I waited for the relief others have described but I did not get it, but as I said, the chest tubes were not a problem for me anyway. I believe the neck tube was pulled around the same time. It is funny how much of a victory it is each time there is one less connection. I still had the arterial line, the Foley catheter, one chest tube, and IVs. Many of the medications are added via the IV line, others by pill. I got a lot of nausea medications both ways. By this point I would classify what I was feeling in my chest as soreness only.
Another night in the ICU, still feeling pretty well except for the nausea. Saturday was much the same, feeling pretty well, alternating with nausea, etc. Coordinating with my wife for visiting was a challenge. I waited for her at one point and several hours later I called and she said she had been told by the nurse that the nurse would call her to let her know when a good time to return is. My wife went to lunch and the call never came from the nurse. It turned out the nurse called the waiting room and not my wife’s cell. So my wife when back to our Air BnB. Communications is not the strong suit of the CC. I’ll discuss that more later. I had the Foley catheter removed that day, but not the chest tube. The remaining chest tube was still draining too much fluid.
Visitation in the ICU is unrestricted with regards to hours (Covid limitations of one visitor of course apply). But, they dissuade visitors very often – during shift change, if some procedure is being done to the patient, etc. Each time the visitor arrives they have to phone in for permission to enter. That being said, you will not be very good company for long at a time in ICU, so while a lonely place to be, sleep passes the time.
Saturday in the ICU/Transfer to Step-Down
On Saturday they got me up to walk. I felt like I was being prepared for an Extra Vehicular Activity on the Space Shuttle. I think it took them the most part of 20 minutes to make and break all the connections and to hang the instruments on a walker. I was able to do about 100-150 feet, mostly limited by the extremely crowded hallway and no other good place to walk. My wife returned and prevailed on the nurses to let me eat a few crackers. That greatly helped with the nausea and I was later able to keep down some chicken and pasta. Big relief. I had to wait several more hours for a step-down room to become available. I still had the one chest tube. I think, but I am not sure, that the arterial line was removed on Saturday. I think this was primarily because they don’t use it in step-down because you would have to stay tethered to the blood pressure monitoring equipment. In anticipation of going to step-down the nurse checked my IV lines. They want two good IV lines before transferring you. At least one of mine was beginning to fail. She made several attempts at inserting a new line and gave up after a lot of poking and searching. I had at that point what they call “runners” – when they try to stick a needle in my vein, it ducks to the side and the needle misses. She asked another nurse to try. He was very rough, and he failed to. I was happy for my nurse as he was quite arrogant and seemed like he was belittling her for failing. A third nurse was finally called; she tried a few times, failed, and switched to my other arm. Success. My left arm was covered with pressure bandages. When I got to step-down they asked me how I was. I said I was pretty good, but my left arm felt like it had been duck-hunting with Dick Cheney. Nothing. I think perhaps they hadn’t been born yet when that incident occurred.
Later that evening a step-down room became available so I was transferred. It was pure heaven. The step-down room was stark, bare, monochromatic, and very clean. Very, very, quiet with the door closed, I could control the lights myself, and while I was still connected to one chest tube, I could temporarily disconnect a vacuum hose to the collection canister and I could get up untethered to the bed. The temperature in the room is controlled with an in-room thermostat. My room was frigid when I arrived; they cheerfully adjusted the temperature up for me. But, it is not a homey or cheerful setting.
The hard wires of the EKG were replaced with a wireless monitor. No oxygen nose thingy. Although I could go to the bathroom on my own, they wanted me to collect any liquid waste in a container, so I didn’t need to walk to the bathroom. I got excellent sleep Saturday night in one to two hour pieces in between interruptions for tests, monitoring, medication, etc. It was wonderful.
Sunday in Step-Down
Ordering meals off the room service menu began in earnest on Sunday. The menu choices were not actually bad. There was a fixed menu for each meal pre-printed for the week, but you could also add anything else from a-la-carte menu. Except – since I was on a fluid-restricted, “heart-healthy” diet, not all of the choices are allowed. The person you call on the room service menu will let you know what you can and can’t have and what substitutions are allowed. Of course, no salt, no butter, limited fat, limited liquids. Sunday morning the standard menu included Cheerios. I have recently started to eat them again for the cholesterol-lowering value. The room service operator said I could have the Cheerios but not the milk as that would put me over the top for total liquid. Since I have not been 3 years old since the Eisenhower administration I declined the cereal. The food was actually not too bad for hospital food.
On Sunday I walked. A lot. Of course at first they wanted me to be accompanied and to use a walker. They would spend time connecting my chest drain canister to the walker and off we would go. Using the walker was awkward as it had only two wheels; I had to tilt a little forward to get it on the two wheels and to let it be steerable. When my wife returned, I dispensed with the walker and she carried the canister and held my hand in case I wobbled. The nurses let us get away with it. Masks are required in the halls so we both had to wear them while walking. I believe I did about 18 laps of the hall that day in at about 5 per session, each one about 180 steps, or, conservatively, about 1.2 miles. I think I overdid it as I felt a little lousy that evening, I didn’t sleep well, and I was fried on Sunday.
Monday in Step-Down
I was very tired on Monday and somewhat depressed that I still had the one chest tube. I had had a chest x-ray the night before and the findings didn’t sound great, so that worry and the tiredness and the chest tube made me doubtful that I would get out on Tuesday. Also, and I won’t go into the details, the biggest problem I have with anesthesia and the pain drugs is that my GI tract shuts down and is not very agreeable to reawakening. I was unable to get as much walking in on Sunday. When I did, I went by myself carrying my own drainage canister. Very early in the morning however a doctor came into my room and said “You don’t look like you belong here anymore.” So the release process started. The last things I needed were 1) get my GI tract back in action; 2) get an EKG; and 3) get another x-ray. Then a set-back occurred – while preparing for the EKG, I was rearranging myself on the edge of the bed I stepped on my remaining chest tube while trying to stand up. A tube connection broke. All hell broke loose – it was treated as an emergency. While it hurt quite a bit for a second or two, the tube did not pull out and the stitches holding in to my chest didn’t break. The panic was their fear that air would go up the tube and cause a pneumothorax. Well luckily it didn’t but it took about 5 nurses and a doctor to fix the broken connection and get me reconnected. A chest x-ray showed no issues. Sometime that day Dr. Gillinov and his entourage swept into my room and stayed for 30 seconds. I thanked him profusely and sincerely.
Early that afternoon a really terrific and highly-skilled PA came in to remove the chest tube. It came out with zero discomfort. However, when she tied off the stiches, it seemed like my head and my feet came off the bed at the same time as she pulled the knot tight. But it was so great to be disconnected from everything you can’t imagine. I waited the rest of the afternoon for one final x-ray and an EKG. Both were completed by the middle of the afternoon, and the preparation of the final release papers got underway. The nurses removed my remaining IV lines in the early evening and the PA returned to review the release documents and medications. My wife popped across the street into the CC Pharmacy to get what I didn’t already have. I got cleaned up and dressed in real clothes.
Here is what I was prescribed:
1. Metroprolol (slow release, indefinite use)
2. Lasix for fluid retention (for 5 days only)
3. Potassium to compensate for loss by the Lasix
4. Pantoprazole (something for stomach acid which I didn’t think I needed, but for 14 days only
OTC medications
5. Baby aspirin (clot prevention – for the rest of my life)
6. Polyethylene glycol (Miralax/Glycolax for constipation – if required)
7. Tylenol 500 mg (for pain relief; limit to 4000 mg per day)
8. Melatonin (help with sleeping if required)
In case of emergency:
9. Oxycodone IR (for severe pain, which after 8 days I have not touched)
I already had several of these items. We did pick up the oxycodone, pantoprazole, and Lasix. We have a good prescription drug plan, so I think the total was $9.00.
I was released around 8:00 pm. I was wheeled to the lobby pick-up point. When we got there a red-coated traffic flow person came into the lobby to ask if I was waiting for the shuttle. I said my son was picking me up. He asked me for the make and color of the car so he could watch for his arrival. Shortly after, into the car (back seat) and off to our Air BnB.
1. The Cleveland Clinic is an extraordinary facility staffed with highly professional, extremely competent staff. The surgeons, ... Read more
1. The Cleveland Clinic is an extraordinary facility staffed with highly professional, extremely competent staff. The surgeons, nurses, and support staff are all excellent. The level of care was very high. The systems they have in place run smoothly and are well managed. I feel you don’t need the “Advocate” that you need in other hospitals to be sure you get the right medication or are not ignored. I saw no evidence of mistakes or lack of attention.
2. Dr. Gillinov is an exceptionally skilled surgeon (understatement). If your valve if repairable, he will repair it. I would have complete confidence in his recommendations. Perhaps not the most warm human being, but this quality may be overrated in a surgeon, and you won’t deal with him much anyway (at least, not while you aren’t drooling). His support staff, especially the surgery team, is top notch. As I said, Dr. Gillinov does the difficult part (the actual work on the heart). His support team opens, gets you on the heart/lung machine, and closes. Their work I believe has a lot to do with the outcome with respect to your recovery time and post-operative discomfort. Top marks all around. I feel that because they have seen everything, nothing will throw them off. Probably the best place in the world, in my opinion. The nursing staff, while appearing to be quite inexperienced, are very good. The pain management protocols are excellent.
3. I found that this was not a grossly painful procedure. That being said, I know that this is very subjective. I recently read an article which discussed the 1-10 scale that is in use now for assessing patient pain. As we all know, 1 is no pain, 10 is the “worst pain you can imagine”. So, while much better than what they used in the past, this scale is obviously variable based on either the worst pain you have ever had or your level of imagination. Someone who has been exposed, say to wartime injuries or who has a vivid imagination about how bad things could be would grade a given level of pain very differently from someone who can only recall, say, a broken bone as a child. I consider myself a wimp with regards to pain tolerance, largely because I have not been seriously ill or even mildly injured. But, last year I had an untreated staph infection in my spine for 6 months culminating with the implosion of my spleen. I am betting my “worst pain you can imagine” threshold was somewhat reset. While I was in the CC, the internal criterion I used was “Could I sleep through this pain?” I set that at about a 4. At no time did I feel anything other than short-duration pain from vein probing or tube removal that rose to this level. I never felt that I could not sleep due to discomfort.
4. The nursing and technician staff will go to great lengths to preserve your modesty/dignity throughout your stay.
5. Unlike any other medical establishments I ever dealt with, the CC seemed curiously indifferent to finances. Maybe that was because I have Medicare and an astonishingly good Advantage program that is not available to the public. The admission estimate said that my responsibility for the total hospital stay and surgery was expected to be $ 200.00 (did I mention I have an excellent Advantage plan?). No one asked me for my co-pay for that. Copays for some of the pre-admission testing are required and can be pre-paid through the MyChart app. My experience with other systems is that there is almost always a Bridge Troll that you physically can’t get by before they get their cash. HOWEVER – if you do have a financial question, LOTS OF LUCK. Before I traveled to Cleveland, I noticed that while I had received pre-authorization for the hospitalization and surgery, I had not received pre-authorization for the pre-admission testing. Since that was to be done prior to admission, I wanted to be sure my insurance would not deny it. I contacted my insurance company and they said they had received no additional requests for pre-authorization. I then attempted to contact Dr. Gillinov’s nurse. She referred me to the CC Patient Financial Advocate (or something like that) phone number. I called that to be put on hold for several hours. The message said that you could reach out via the MyChart for an answer. I messaged within MyChart and they referred me to the same number phone number as before. The phone hold message said if you couldn’t stay on the line, you could request via an internet user interface to have them call you back. I tried that too. The next available phone contact appointment I could get was for November 17, essentially AFTER all the pre-admission testing would be complete. I called back my insurance company and a very diligent agent spent the next several hours on the phone trying to get through to the CC. He finally called me back saying that the CC would not release any information to the insurance company (say what?). So he put me on a conference call with someone from the CC who would talk to me but not him. We finally resolved it – everything was good and authorized. The moral of the story is don’t wait until the last minute to resolve any issues you think you might have because it may take longer than you can imagine to get the information you want. That being said, I bet the CC is very, very good at the financial end of this enterprize.
6. While the medical treatment systems and skill set are outstanding, their family/loved one/significant other communications is not very good. My wife spent a lot of time trying to get past gatekeepers and trying to get to the right phone number to get information about me while I was incommunicado. The medical staff that you deal directly with (nurses, aides, test technicians) will not volunteer any information that you do not specifically request. I was never even told the outcome of my surgery until I asked. I knew I had lived, but beyond that, nothing until I pushed the question. I would say it is essential that you get your visitor to bring your cell phone to you as soon as possible in the ICU. Otherwise, you may as well be on the moon.
7. The facility, while large and imposing, is well equipped to support your visitor(s?) for lounging and food choices. Trying to get to the facility via the front lobby is terrible. I recommend the parking garage.
8. By way of physical preparation, I found the most useful thing for me was core-strengthening exercises in the months leading up to surgery. All I did was some planks and many straight-leg leg lifts - the kind where you lie on your back, raise your legs straight up, then lower them until the almost but do not touch the floor. Do as many repeats as you can as often as you can. I capped out at three sets of 25 reps several times per week. I believe that as a result I did not need any assistance sitting up or getting in or out of beds and chairs.
I don't know how you managed to remember all of this given a very stressful week, nor to have the energy to write it down afterwards, but thanks to your preview, I feel less anxious and more ready. I hope your recovery continues to go well and you have a good follow-up appt on Monday.
Esther, best wishes as you head to Cleveland. We southern girls aren't prepared for Cleveland in the winter! After reading George's story, I am more convinced than ever that we're in the very best hands with Dr. Gillinov and the whole CC team. You'll do well and be on the recovery side soon!