Wednesday of recovery

I'm home. Thanks to everyone for all the positive support, prayers and well wishes. You guys are great!

First the minutes of this meeting:

The body is pretty amazing system, its really complex and really resilient. If I didn't already have one, I'd get one. My thoughts are with Gene and his family some, but I will have to deal with that more later, (personally)

Review: I have read the details of many of these surgeries and its amazing how different most of the accounts are.... Just suffice to say, if i rendered all the details down you would find the differences are; hospital practices, nurses, cardiologist, surgeon, equipment, and the person's physical, emotional and mental makeup. Otherwise the paint colors seem similar in the halls.

Upon arriving home I did walk around the house and think of a heart that wasn't giving me what I needed and it now pumping 100%. It was kinda exciting but I have tried not to let these expectations, well, become expectations. I did however box up my previous energetic life and give it to Paula for Christmas, in hopes that was what I was giving her this year.

A few details for this entry. It turns out the valve I was born with, was bicuspid, instead of tricuspid, the aortic root aneurysm (dilation) a normal byproduct of the bicuspid valve. That means it was a birth defect that gets worse over time as the lips of the valve curl back.

I have it on my key ring if you ever want to see it...

Home Now

Home on Tuesday afternoon.

Resting in ICU

Mark's surgery went very well today. The surgeon confirmed that Mark was born with a bicuspid valve rather than the tri that 95% of us have. The flaps were folded over, contributing to the severe leakage and explaining his difficulty with cardio related activities. He now has a nice new valve which will improve his quality of life markedly.

The surgery was 3 hours from when they wheeled him away from me until I was talking with the surgeon.

He is resting now in ICU and progressing very well according to his nurse.

My sister and brother-in-law drove in last evening which was a nice pre-op distraction for us and I've been in her capable hands all day.

Thank you for your love and prayers,
Paula

Its today! Yawn....

Early AM for surgery. Slept fine, Paula not so much. My anesthesiologist called me at home last night to check on me, answer any questions and review my instructions.

We talked about the anesthesia and apparently he will use four different types during the operation. The tricky part, whenever working on the lungs or heart, is to keep everything working while you're under. Seems like a reasonable goal...

Pre-op tests

Merry Christmas!

This past Tuesday, December 23rd I headed back to the hospital for more tests.

You can make an appointment but it isn't necessary. We did call ahead to see how busy they were...which they weren't. I arrived, checked in, got blood work, an EKG and a chest x-ray in about 45 minutes! I have seen emergency rooms with very few people there go slower than that!

My hospital has valet parking and a Starbucks, along with live Christmas performers in the lobby. I got music, great service, a decaf latte and my car brought around for me...sweet!

No-one called me to tell me I passed customs or whatever so I guess I am ok.

Report at 5:00 am tomorrow, Friday, for surgery at 7:30.

Reschedule?

We lost a dear friend this week. His funeral ended up being scheduled for this Saturday, the day after my surgery. I was torn about the surgery vs the funeral. His widow wanted me to deliver a eulogy and I felt compelled to do it.

My first discussion with the surgeon's super admin, Vicky, made me feel that it was of course up to me and they would do whatever, except the surgeon was off for the rest of the year and my reschedule would have to be the following week. Paula needed to be back at work and I really didn't want to delay...or pay another deductible for 2009 that would end up being wasted (long story).

In the end I had a friend video my eulogy, to be played at the funeral, and lots of my family will represent us. I will be there in image and spirit. So, I hurried down to the hospital for the pre-op tests.

Oh ya, Vicky did get my requested anesthesiologist scheduled for my procedure! Another reason I didn't want to reschedule.

Post-op Projections

I talked to my surgeon's admin who is great by the way (especially if I get my anesthesiologist). I wanted to know what to expect post op.

First, I will be "up and around" immediately. These days you're walking around the floor ASAP. Dr.'s orders. The hospital stay should be four days without complications.

Recovery varies but my surgeon's test is if you can make a mile walking in less than 30 minutes you are cleared for regular activity. It takes up to 90 days for the breast bone to heal but you can get on with your life long before that. I keep wondering about driving, or riding in a car. If you were to be in a frontal collision, the seat belts and airbags could wreak havoc. I guess I will be the one driving around town backwards.

The surgeons office will be responsible for my post op care and my pain meds. Its probably a good time to buy Vicodin stock as I don't plan on scimping. Actually, you do have to be careful with addiction so I will move to alcahol as soon as I can...

So, recovery is pretty much up to me, and the admin says that the better shape I am in going in...the better my recovery will be coming out...uh oh. That's how this all started!? I am in the worst shape of my life right now...

Preparing for Surgery

My procedure is scheduled for the 26th. The day after Christmas.

I received a call from my Cardiologist also following up on the Cardiac CT. He echoed that this didn't change anything and he is sure there isn't anything more we need to do while I am laying there with my chest cracked open. I asked if there was anything we should be looking for while we're in there that might be part of the heart attack issue. His response is that we "need to close the book on those" they were an anomaly. Easy for him to say.

If the front wheel fell off your car out on the highway for no definable reason and the mechanic later said don't worry about it...would you worry about it?

Anyway, I get some anti germ soap to bathe with leading up to the surgery as well as some nasal gel to kill stuff in my nose. I guess the least sterile thing in that room will be me so I need to "scrub" as well.

We have canceled our trip to OKC for Christmas because those kids carry germs that I am not resistant to...I am very concerned about catching another cold right before surgery.

I think I am ready.

Anesthesiologist

As I was researching the surgeons, I also received a recommendation for an anesthesiologist. Now my thoughts on this are probably a little paranoid but...

Most of time when I see people post-op its the anesthesia that seems to cause the most lasting discomfort. Nausea, constipation, headaches, some lasting weeks. I also learned that the anesthesiologist doesn't just plug you into the juice and disconnect you at the end...their job is to continuously adjust the stuff to keep you right in the sweet spot of minimal juice while making sure you don't wake up screaming. Its kind of an art form.

Picking a good anesthesiologist apparently is pretty important so I call my surgeon's office to request the guy thats been recommended to me...

Before I can even plead my case my surgeon's admin says no. We cant do that...no requests. So I then I plead my case and she asks who I want, I tell her and suddenly she seems to agree he is a great choice, the surgeon would love to work with him and she would see what she could do!?

Of course she assured me they only use really good people but they are on a rotation and of course it is the day after Christmas. So I am not sure yet who I am going to get...more work to do on this front...

Cardiac CT

Again, I have already had one of these. You take a pill to slow down your heart rate the day and morning before. That way they get a better picture. You just show up, get a gown on, lay down, they give you some dye intravenously and scan your heart in the big circle machine.

My surgeon calls to tell me that I am indeed plumbed wrong...in fact how I get blood to the front right of my heart is a mystery. I ask the same question I ask every time, "could that have caused my heart attacks? And as always, I get "I doubt it".

I ask if this test has changed anything in our strategy and the answer is no, all systems are go for OHS.

Choosing a Surgeon

My Cardiologist had Dr. Platt visit with me right after my TEE. He was nice enough, and very patient with my million questions. I felt like I knew pretty much what I needed to know then, and of course I would do a lot more research on him, the procedure, the valve etc.

As I began to cast around for input on Dr. Platt I also added another name of a well know surgeon here in town that does some newer or more complicated procedures. It seemed that one was a star, the other was solid team player. As I or my wife talked to various people it became increasingly apparent that you want a solid team player. A guy you can count on when the going gets tough. That's Dr Platt. The surgery is relatively simple, but I want him there if things don't go as planned. Kinda like picking an auto insurance company...you pick the one that's good at claims, not at sending you calendars and cards on your birthday.

Test me some more?

Now that its been determined my valve needs replaced I have to decide on a surgeon and there are of course more tests. I have had these tests before but again, my doctor wants his own data and tests.

This time I need to have a Heart Catheterization (I think that's a word). That means the cut a hole in your groin to get to a big artery and go exploring. The reason is, "we" want to make sure there isn't anything else we need to do while we are in there changing the valve. I am pretty sure its a waste of time since my last one when hospitalized showed no blockage, but its prudent. Its not that tough of a procedure except I reported at 7:00 am and I don't do anything well at 7:00 am.

When they are in there, exploring my heart's arteries they discover I am plumbed wrong. I don't have typical arteries feeding the heart muscle...in fact they have enough concerns about the plumbing, I get to do another test! Cardiac CT!

The issue is when you are plumbed wrong you might have two arteries crossing each other. In certain circumstances one artery can cut off the blood supply to the other. Viola', heart attack. So the Cat scan can help confirm that the rear of the heart is fine and verify or confirm there are no crossovers.

Heart valve replacement

Here's the deal. Most likely it cant be repaired. So they replace it. In addition, I have an a dilated Aortic root. Basically the aorta right above the valve is bigger than it should be. They see this often in leaky Aortic valve patients. Which came first, the dilation or the valve problem is unknown.

So the choices are: artificial valve, pig valve or calf valve. The artificial is likely permanent but you must take and manage anticoagulants for the rest of your life. The pig valve requires no anticoagulants but they only last 10-15 years. Same with the calf valve. So the choice is do it once with Coumadin or Wafarin therapy etc or come back in 10-15 years for a redo.

Many people struggle with this decision. It was easy for me. Quality of life. That meant the pig or calf valve. The surgeon liked calf, so its calf valve for me. I also hope they can replace it in a less invasive way in 2023.

I still needed to determine if this surgeon is the ONE.

A new test!

Last week I am scheduled for a new test. A TEE, trans esophageal echo. I've never heard of it, and its never been mentioned before. In theory it gives the Cardiologist a better look at the valve and the amount of leakage. I really didn't have any hopes my diagnosis would change.

Now no one had told me that the stress echos and the non-stress echoes weren't definitive. But apparently they aren't. If anything they may have been misleading because the TEE shows I have severe leakage! I am not even awake yet and they are telling Paula that I need to get the valve replaced. We then spend a half an hour with a surgeon going over the options. Me a little groggy from the anesthesia and Paula a little surprised we are suddenly talking OHS.

Tests

I have had a number of stress tests. Technically, Stress echo cardiogram. They run you on a treadmill then lay you down and use a sonogram device to look at your heart. Mine is always the same. One leaky valve, the aortic. Between moderate and severe.

My new Cardiologist has me do an echo cardiogram...no stress. The technician shares with me that lots of people have leaky valves and in fact she has three! (I can actually talk to her instead of just wheezing from the treadmill). I am reassured this isn't a big deal, and when my results come in they rate my leakage as "moderate".

Why am I doing another test? Because my doctor, in spite of having the records, still wants his own tests. This theme will continue through the process.

Second Cardiologist meeting

Meeting is not the right word. Meeting sounds like you're all equals at a table. I am sitting on a paper covered bed in a cramped room. It was a waste of time, as they hadn't yet gotten my records from the other cardiologist. Except for one final exchange, born out of frustration. I expressed my concern with how long this was all taking and the concern I had about having another heart attack...a big one. My doctor said I would be fine and he would make sure I lived a long life. I immediately countered, " I don't want you to make sure I live a long time, that's out of all of our control. I want you to improve the quality of my life for however long I live." I wanted quality over hollow assurances of quantity. For the first time, I really said what I was feeling.

First Post and Background

Admittedly this is my first attempt at blogging. I don't lack for opinions, or something to say, I just don't think its worth publishing. If I say something worthwhile, let me know...

I want to share my experiences with Open Heart Surgery. (I will refer to it as OHS to decrease the drama). Please ask any questions or let me know what you think.

First, I don't have any known heart disease in my family. We prefer cancer. Both are scary but I got the bad ticker, which I am willing to settle for...

Over the years I have found it harder and harder to aerobically exercise. As my 40 something weight increased, my fitness decreased. That along with high cholesterol got my doctor on the aerobic fitness prescription bandwagon. I knew she was right, but I complained a lot about shortness of breath, feeling ill, and having a hard time even getting in 20 minutes a day. And no, I didn't sleep better, or lose weight of have more energy (liars).

After another appointment, I declared the exercise prescription a bad idea. My doctor, being smarter than me and all, decided to send me to a Cardiologist to prove nothing was actually wrong with me.

Of course, that's when we found out that there was something wrong with my heart (and my doctor).

I had an Aortic Insufficiency. A leaky valve. A murmur... in descending order of scariness. My first cardiologist couldn't have been more excited, he had some pretty swanky offices, great looking "assistants" and he loved the idea of another "long term patient". He made me feel totally dependent on strict regimens, pills, regular stress tests etc. Oh, ya, I needed to not lift weights and go easy on the exercise.

I changed Cardiologists.

My next one had just the opposite point of view. "Lots of people have leaky valves and function with them that way every day, including Stars hockey players". He said I should just quit worrying about it and keep an eye on my cholesterol. He would keep an eye on the leakage and maybe someday we would replace the valve.

I was determined to exercise so I started biking with a pulse meter. I trained four times a week for eight months determined to "just not worry about it". I was passed by every geriatric, overweight woman biker on the planet, no matter how hard I worked. My arms and legs would go numb and I would get slower and slower trying to keep my heart rate below 150.

My cardiologist said that everything was fine, tests look the same so its not progressing, and my heart seems to functioning fine.

Then I had a heart attack. It was a big one for me. 911, emergency room, scared my wife and niece big time. However, for my doctor, it was a little one. In fact it was so little it didn't show up on an EKG and the only way they confirmed it was a heart attack was because I had an increased enzyme specific to heart muscle stress/damage. (Troponen).

We ran lots of tests, spent three days in the hospital and basically got "dont worry about it, the heart's fine, there's no blockage, we have no idea why you had a heart attack". My cardiologists previously reassuring casualness was now very disconcerting. I went through all of the emotional stress, feeling vulnerable and anticipating something worse. A few months later I had another one. Just like the first one, except I didn't go to the hospital, I stayed home.

Then I found a new Cardiologist.

Actually I started by saying I wanted a second opinion. I of course hear everyone recommending a second opinion but I want to state clearly, that's a lot harder to do than say. My initial doctor's staff didn't want to give up records, didn't do what they said they were going to do etc. My second opinion doctor had patients of his own to worry about etc. I did however like his demeanor and I trusted those that recommended him, we started down the current path, together.