Cardio Appointment

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Okay, I have to write about this, because it’s been worrying me for a day, and I have get it out of my head. I went to my cardiologist yesterday for my “routine once a year post-surgery” visit. I had a vague expectation that I would be getting and EKG and seeing the doctor, and that’s pretty much what they repeated when I went in. However, the nurse guy who said this when I entered the exam room was brand new, so it’s possible he didn’t have the complete scoop on what the tests were supposed to be.

After I met with Dr. Trippi, though, he mentioned he wanted an echo-cardio gram, and it seemed sort of like he was tacking that on at the last minute. And then he went to find one of the echo technicians, and there was a wait while they figured out what testing room I could use, which also seemed like the test hadn’t been pre-scheduled.

When they were taking me from the exam room to the testing room, I could hear Dr. Trippi transcribing his notes about me in his office across the hall, which is rather creepy to hear a disembodied voice speaking about you: “Patient is Mineart, age 38….” I tried to hang back and hear what else he was saying, but the nurse was too far ahead and I had to catch up.

It was kind of a difficult echo – basically an ultrasound of my heart. They had trouble seeing everything, especially getting good pictures of my mitral valve, so it was somewhat painful. And at the end of it, the echo technician said something that struck me as odd — I don’t know if I can quote word-for-word, but it was something like “How long did they tell you the repair was good for?” And of course, I had been told that it was supposed to last until forever, so that’s what I told her.

So they bundled me all up and sent me out, but I of course don’t know what they saw on the echo, or if there’s some sort of problem that they didn’t tell me about. And it’s been worrying me ever since. Gf course, it could be I’m assuming too much or imagining things, and I hope that’s all it is. And I shouldn’t worry until I get more concrete information. But it’s sort of hard to write something funny and entertaining right now.

Update: It didn’t really turn out to be anything, thankfully.

Continue ReadingCardio Appointment

Wow, I had open-heart surgery!

I can’t believe it. I keep walking around the house thinking “wow, I had open-heart surgery. I can’t believe it!” Then I move wrong and I believe it, alright. It’s funny, the doctors and nurses keep saying “You’re not allowed to drive for four weeks! Don’t even think about it!” And I’m thinking I’d rather DIE than drive right now, so I can’t imagine what idiots decide to get behind the wheel like this, but there must be some or they wouldn’t give that warning.

For our Anniversary, David and Garrett made us Chicken Florentine with angel hair pasta in a clam sauce, and an excellent salad. Garrett came over and served dinner for us. It was sweet and amazing and I have to say it’s too bad that they don’t have their own restaurant, because I’d totally go there all the time.

They switched my drugs from vicodin to darvocet, and the freaky nightmares went away. I’m still getting used to sleeping on my back, though, which is not what I’m used to, so I’m having trouble sleeping. It’s getting better. It’s a long story about why, but Kathy helped switch my mattresses around and she built me a platform to help me get into bed. It’s so much more comfortable.

I’ve been watching the first (only) season of the TV show Wonderfalls. I bought it a couple of months ago and saved it for this occasion. I also watched part of the Incredibles, but I did that in the middle of the night when I didn’t want to go back to sleep because of the nightmares, so I need to re-watch it because I’m sure my ideas about it are skewed. But the premise of that film is really interesting. I’m not sure I agree with all of their message. I kind of want to talk to Andy about it sometime, because he loved it so much and identified with the movie so he saw it twice.

I haven’t played Xbox because it’s a bit too much moving yet. This is the most typing I’ve done in a while, because that’s not fun, either.

Continue ReadingWow, I had open-heart surgery!

Are you nervous?

Heck yes. It’s funny, that’s the question that nearly everyone has asked me. I am really nervous. So I’m just in denial about the whole thing, for now. I’m sure I’ll lose it once I get to the hospital. 🙂

Seriously, though, I think I’ll be just fine. I’m young and strong and pretty healthy, and I know lots of folks who’ve had this done. It’s a major surgery, but it’s a pretty common procedure for the doctors, and since it’s not an emergency and I’m not currently in distress, things are really positive. I’m sure it will suck for a while, but I’ll be back and writing in no time.

For family and friends — if you’re in town, one of the main things we might need is for someone to sit with me in the evening so Stephanie can feed her cat and get her mail and tend to her home. So if you want to hang out with an invalid and watch some DVDs or play some Xbox, we’ll probably call you up.

Continue ReadingAre you nervous?

Surgery details and information

I go in for surgery at 5:30 a.m. this Friday at Methodist Hospital in downtown Indianapolis. 1701 N. Senate Blvd. Indianapolis, IN 46206. 1-800-248-1199 is the toll-free number to call for information.

If you want to see me in the hospital before surgery, please come at 5:30. If you are visiting while I’m in surgery, you will need to go to the main information desk to find out details of where I am. The operating room and surgery waiting areas are on the second floor of the A building. Parking garage 1 is the closest parking area.

Surgery starts at 7:30 and should take about 4 hours. After surgery I will be moved to the Cardiovascular Critical Care Unit (CVCC), which is on the second and third floors of the same building, building A. Family members may be in one of two waiting rooms — 317-923-0171 or 317-923-0170. Or you can try to call Stephanie on her cell.

Visiting hours while I’m in the CVCC are: 9:30-11:30 a.m., 12:30-3:00 p.m., 4:30-6:30 p.m., and 8:30-11:00 p.m. While I’m in the CVCC, I can receive cards and mylar balloons. Flowers, planters, or latex balloons aren’t allowed on the unit.

After a couple days, I should be moved out of the critical care unit to a regular room, where I’ll be for a couple more days. I should have more visiting hours there and be able to see people. If you want to come visit me, call the information number to find out where I am and what my visiting hours are. Or you can send me monkeys. 🙂

Stephanie will be sending some e-mail updates letting family and friends know how I am. She’ll also be posting to my Web site, so watch this spot for more information.

Continue ReadingSurgery details and information

Cognitive Decline?

In writing about my upcoming heart surgery for IndyScribe, I stumbled across some information during research that is really disturbing, and may change my mind about having open-heart surgery. According to research, being on a heart and lungs machine during the operation can cause “cognitive decline” in 42% of patients — in other words, brain damage. Given the number of medical resources quoting the study, it appears to be a valid one.

Another source

A source that says it’s caused by endotoxins

Duke Med News Source

Given this, I’m not sure I want to have the surgery this way. I’d rather go some other route than risk the possibility of losing any of my mental ability. If that means insisting on a less-invasive procedure or foregoing surgery altogether, I’m going to consider those options.

UPDATE: I talked to my surgeon Doctor Beckman’s assistant, Michelle, this morning about this. She said that there isn’t a way to do mitral valve surgery without using the heart & lungs machine, which I guess I could have figured out on my own. (Duh; they have to stop my heart to cut into it, whereas with bypass surgeries they can sometimes avoid that.) She also pointed out that the studies were done on heart bypass patients who had clogged arteries, and that is thought to have had an effect on their situation. Also, the amount of time I will be on the machine is shorter, and they won’t have to cool me down as far or as long, which are also contributing factors. The other factors are that I’m very young to be having this surgery, and that I have advanced cognitive abilities now, which means my risk of losing them is much less than for people who are older and less educated.

I felt a lot better after talking to her. I’m still going to be doing logic puzzles and math stuff after the surgery, though, because now I’m paranoid.

Michelle also said she was very happy that I’m researching information about my surgery online, and that they wished more patients would do that. Heh. I didn’t mention that I’m also WRITING about it online. I should tell them that. Especially since if you Google “Dr. Daniel Beckman” my website comes up at the very top of the list. Hee hee. I wonder if he ever googles himself?

Continue ReadingCognitive Decline?

How to Have Open Heart Surgery in Indianapolis

I’m kidding, of course; I’m not suggesting you should deliberately go out and have open-heart surgery. Unless, of course, your doctor says you need to. But since I’ll be doing it soon, I’m certain it will be all the rage and everyone will want a fashionable chest scar like I’ll have. Since that’s the case, let me tell you how it all came about. I was born with a heart murmur, which I’ve always had to have monitored by my doctor during my regular check-ups.

More specifically, I was born with two heart valve defect problems; a pulmonary stenosis, which means my pulmonary valve is too narrow and doesn’t pump blood efficiently, and I also have mitral valve prolapse, which means my mitral valve doesn’t close completely after pumping blood into my left ventrical, and allows blood to flow backwards into my left atrium, causing a whooshing sound or “murmur” when you listen through a stethescope.

Heart Diagram 2

The mitral valve (named after a Bishop’s miter) is the “inflow valve” for the main pumping chamber of the heart, the left ventricle. Blood flows from the lungs, where it picks up oxygen, across the open mitral valve and into the left ventricle. When the heart squeezes, the two leaflets of the mitral valve snap shut and prevent blood from backing up to the lungs. Blood is directed out of the heart to the rest of the body through another valve, the aortic valve.

Mitral valve prolapse is fairly common in women; it affects about 15% of the population. It’s less common in men, and men who have it tend to have more problems with the mitral valve as they get older.

Neither of my heart defects affected me much as I was growing up, or at least not that I’ve been aware of before. I had to go to a cardiologist when I was five, which was cool because I got to have an electrocardiogram. They hooked up electrodes to various points on my body that feed into a machine, and sort of like a polygraph test, the needle scrawled across the long strip of paper drawing my heart beat. They gave me the strips of paper and I got to take them to show and tell.

I also got cool chest x-rays, and the doctors were all very nice and showed them to me and pointed out my heart and internal organs hiding in my skeleton on the film, and when you’re five years old, it’s terribly exciting to see your own skeleton.

The only tangible thing that I noticed about my heart murmur was that I had to take antibiotics before I went to the dentist and for any other event where I might get an infection, since an infection can settle in the heart valves and compound the problem.

I’ve always tried to exercise and stay in shape, but I was more of a bookworm than an athlete as a kid, so I don’t really know if my heart condition held me back in activities. I’m not sure if I got tired more easily than other kids or not.

I definitely have noticed a change in the past few years in how tired I get at the gym, and how I get out of breath and short-winded, but I thought I was just more out of shape than I had been in the past, so I would try to work harder. I always thought of my heart murmur as a benign oddity that didn’t affect me much.

My Regular Physical

So today, I’m 36 years old, and about 30 years have passed since I’ve seen a cardiologist. When I went to get my regular physical a couple of weeks ago, my primary care doctor noticed a change in the sound of my heart. She always checks it, and usually it almost seems like an afterthought to the rest of my regular physical, so when she started to pay more attention and listen longer, alarm bells went off in my head.

It turns out that my murmur has gone from a grade 1 to a grade 3 on a scale of 6, meaning it went from a rating of “mild” to “moderate.” It’s possible that this increase in the murmur may be a result of age, or as a result of a possible undetected heart valve infection that occurred when I had appendicitis two summers ago.

My PCP sent me to The Care Group at Methodist Hospital downtown. Initially I went for an echo-cardiogram, which is an ultrasound of the heart, combined with an electrocardiogram. It’s a bit different than a regular ultrasound, because it combines the pictures of the heart with a comparison of the sound and drawings of the heart beat. They look at each of the chambers of the heart and measure some standard points in the size of the chamber and how each of the four valves in the heart open and close. The measurements tell them if a chamber of the heart is enlarged and if the valves are closing completely.

They also use a color doppler detector (much like the TV news weather departments) to view how the blood flows through the heart. So they could see that the red flowing through my mitral valve was good, but the blue color where my blood flowed backwards through the same valve was not so good. It’s really not supposed to do that, and it means my heart pumps much harder to move the same amount of blood around.

Echo Cardiogram

My Cardiologist, Dr. Yee

After I went in for the echo, it was several days before I was able to talk to a cardiologist to hear what the results of that were. I went to see Dr. King Yee at the Care Group at Methodist Hospital. He said that the echocardiogram showed that my mitral valve prolapse had worsened, and that my only option was to have open heart surgery to repair the valve. If I don’t, the valve will continue to spread out and the gap when it is “closed” will become larger. In addition, my heart would enlarge from the extra work and become out of shape.

Anther potential problem is that my heart strings could give out. What this means is that the mitral valve is anchored by strings of tissue that act like the cables of the golden gate bridge, or like the lines of a parachute. They keep the valve from being open permanently. It’s possible for these strings to stretch because the valve doesn’t close, and they can also snap, which can cause the valve to fail.

I had no idea that the phrase “tugging at your heart strings” had a real-life source. Interesting.

They do some less invasive procedures for some types of heart valve surgeries, but in my case because the concern was the mitral valve, a valve repair which requires the doctor to have more room to work than a catheter technique would give. So open-heart surgery it is.

While I was in the office to see him, Dr. Yee had me do a stress echo-cardiogram, where they do an echo, then the put you on a treadmill to get your heart rate up as high as possible, then they lay you back down and do another echo while your heart rate is way up. It wasn’t as fun as the last one; it was exhausting. What he was looking for was how my other heart defect was performing, but the pulmonary stenosis seemed to be fine. It appears to have improved from when I was a child, and the doctors feel my pulmonary valve won’t need any repair during the operation.

Transesophageal Echocardiogram

To prepare for the surgery, and to get a really clear picture of what was happening with my heart, my doctors wanted to have me get an Transesphogeal Echocardiogram, or TEE test. It was performed by Dr. James Trippi in the Cardivascular center in Methodist. (Dr. Trippi is well-recognized in Indianapolis for starting Gennesaret Free Clinics in Indianapolis 17 years ago to help homeless and low-income people).

TEE Test

The test is an ultrasound similar to the others, but in this case they stick the ultrasound probe down the patient’s throat and into the esophagus, which sits behind the heart. The resulting ultrasound is a much clearer picture of the heart’s architecture and where the problems lie.

The procedure was more intimidating than I expected; they stick you in a hospital bed and wheel it around from the cath holding area to the cardiovascular area to do the test. Any time you have to put on their clothes and they start moving your bed around, you realize this is a real hospital thing and not a simple “visit the doctor” thing.

My test went really smoothly. It’s a relatively painless procedure and all I had as a result was a slight sore throat, which went away soon after. And they drugs they give you to knock you out are fantastic. I felt really good after the procedure. I apparently asked Doctor Trippi the same question ten times, but I felt good asking it. Fortunately my girlfriend was there to hear all the answers, or I’d be wondering today what the heck we talked about.

They also made me stay and eat dinner, which was pretty cool, except I was still high from the drugs they gave me and ordered odd combos of stuff.

Dr. Trippi also explained that engaging in strenous activities could cause further damage to my mitral valve, and that I should restrict my activities prior to the surgery, because the TEE test showed that my valve’s anchor strings were indeed stretched out, and one of them has snapped. The others are ready to do so, and will if I put pressure on my heart. If one of them does break, I’ll be in the emergency room asking them for surgery as soon as possible.

So — elliptical machine? Bad. Lifting weights heavier than a pound? Bad. Walking up more than a flight of stairs? Bad. Carrying boxes of books? Bad. Opening stuck jars? Bad. Moving groceries into the house? Bad. Anything that involves strain? Bad. Short, casual walks around the neighborhood are okay. Unfortunately the list of restrictions seems to include 40 or 50 things I do every day.

Thank god I didn’t start tearing out the spare room and extra bathroom in my house that I planned to work on this spring. Thank god I went to the doctor for a routine check up so they found this. Thank god I’ve been lazy and used the elevator instead of the stairs at work. I’m pretty fortunate considering all that.

Dr. Daniel Beckman, heart surgeon

Dr. Trippi also gave me the name of the heart surgeon who will be performing my surgery, Dr. Daniel Beckman, whom I met with a few days later. He seems to have a lot written about him out there in the internet ether. Here’s some information about Dr. Beckman. And here’s another bio page on him. Also, here’s some info on some rare procedure that Dr. Beckman is pioneering (not what I need done). Here’s a video [real player required] of Dr. Beckman talking about some rare procedure he’s done on a website about heart surgery. And in this IndyStar article, Dr. Beckman is being interviewed about a surgery he performed. And here’s a mention of him on Channel 6 news’s site about a surgery he performed.

And a couple of medical articles he’s authored or co-authored. One of them is titled “Pain levels experienced with activities after cardiac surgery – Pain Management” — and it’s all about how pain can get in the way of recovery. Yikes! Shouldn’t have read that. And some other paper he wrote, that makes no sense to me at all, but sounds really impressive.

Valve Repair vs. Valve Replacement

Doctor Beckman said that he had looked over all my tests and records, and said that it’s a 90% chance that my surgery will involve only be a valve repair, not a replacement. They will know for sure once they’re in, but he says my chance is good for the repair.

The difference is pretty significant; in a mitral valve repair (called annuloplasty) they would insert a cloth-covered ring to bring the leaflets of my valve together and hold them in place, and possibly repair my heart strings with gore-tex cords.

On the other hand, a valve replacement would require my entire valve be replaced with a mechanical heart valve, which would require me to be on blood-thinners for the rest of my life. Artificial tissue valves will last between 10 and 15 years, placing me at risk of a second operation to replace the valve. The risk of stroke with an artificial mitral valve is significant (approximately 1 percent per year).

Nationwide data suggests that about six percent of patients with a valve replacement do not survive the surgery. But with a mitral valve repair, the chance of survival is about 98 percent. My risk is a bit better, because I’m younger than most open-heart surgery patients.

Several factors influence those numbers. The risk of stroke during and after valve repair is extremely low compared to valve replacement. Artificial valves can cause infection, but infection is unlikely when the patient’s own valve is repaired. Further, repairs are much more likely to last for the rest of my life.

I’m of course hoping for the repair rather than the replacement, because I won’t need to be on anti-coagulant drugs, which means it would still possible to be on The Amazing Race. (Where I would totally milk the “I had open-heart surgery and now I just want to prove what heart patients can do!” vibe for all it’s worth!)

Open-Heart Surgery

If you google the terms “mitral valve repair surgery” you can find some really gory photos of the surgery itself. Don’t do this right after lunch. I speak from experience.

During valve surgery, the doctor makes a large incision in the chest. Blood is circulated outside of the body to add oxygen to it (cardiopulmonary bypass or heart-lung machine). The heart may be cooled to slow or stop the heartbeat; this protects the heart muscle from damage during surgery to repair the heart valve.

At this time they install the cloth covered ring and also do repair of heart strings and any other loose ends.

During all this, I will have a breathing tube in my throat, a drainage tube in my nose, I.V. catheters in my arms and neck, a foley catheter (look that one up yourself), and chest drainage tubes that exit below my breastbone. Sounds like fun, doesn’t it? I will look like a real cyborg, I’m sure.

Recovery

Surgery RecoveryAfter the surgery, I’ll be in intensive care for several days. During that time I’ll be able to sit in a chair and do some walking around. I will also have to do breathing exercises and cough regularly with a pillow against my chest to prevent pneumonia.

Then I’ll spend several days in a step-down care center, where I’ll regain more of my activities. After five to seven days, I’ll be released from the hospital.

The recovery time is significant and for a little while after I come home I’ll need someone with me to watch me 24 hours a day. The main difficulty in recovering is waiting for my sternum to repair, which is basically the same as waiting for a broken bone to heal. I’ll also need to build up my physical endurance and learn a regular program of exercise.

For the first six to eight weeks I won’t be able to drive, and will be restricted from doing many household chores. (Which is good, because I hate the word “chore” and always feel like I’m on “Little House on the Prairie” when I hear it.)

There is also a possibility of some cognitive decline. That possibility is also less because I’m so young and because I have a higher level of education.

On the bright side, according to this page, I’ll be able to resume fishing after 6 weeks, and firing small caliber pistols after 2 months. Woo hoo!!

Even cooler, I won’t be able to mow the lawn for 3 months. Yeah! I’m hoping to create the first urban jungle in my own yard.

How I Feel About All This

Obviously, this whole thing is very scary, and I’ve gone through a whole range of emotions since I found out about it. I sort of had a feeling from the beginning that there was a real problem, before I even went in for the echocardiogram. I can’t say why I knew that, but it didn’t seem from my regular doctor’s behavior that this was a small problem.

And after talking to Dr. Yee and finding out about the surgery, I was truly scared. The numbers I’m reading about mortality rates after surgery are really really frightening, although I think I have a better situation than most folks who find themselves in my shoes.

Aside from my fear of dying, I’m afraid of how painful the whole experience will be, and I hate the idea of having to have help for everything and not being able to do anything myself. It’s tough right now not being able to do what I normally would.

In all, though, the risks of not having the surgery are huge compared to the risks of having it, so it doesn’t make sense to avoid doing what needs to be done.

Continue ReadingHow to Have Open Heart Surgery in Indianapolis

Tired

I started to leave for lunch to get some sunshine a little while ago. Unfortunately, although I remembered my wallet and key card, I forgot to take my car keys with me. And on my car keys is the elevator fob to get past the security block on the elevator. So to get back to my floor, I either had to climb the stairs and use my key card to get in, or ride up the elevator with someone else going to my floor.
So I started back inside, and although I called out to a woman from my floor to hold the door, she didn’t bother, and I couldn’t get on the elevator. So I waited around 10 minutes, but never found anyone else who worked with me. So I reluctantly climbed the stairs and came back to my cube. I think I should have waited longer for the elevator. I’m exhausted. I was planning on getting my keys and heading back out, but I think I’ll sit here instead.

Continue ReadingTired

Living Wills

Stephanie and I met with an attorney last night to arrange to get living wills. She’ll draw them up and then send them to us next week. She charges $230 an hour (wow!) and it should take her a couple of hours to get it done. Ouch. But it’s better than the alternative.

Here in Indiana, living wills don’t address the condition of persistent vegetative state, which is the situation Terri Schiavo is in. Indiana living wills cover only terminal conditions where extra-ordinary care would be taken to prolong an unquestioned terminal condition.

So I’ll only be able to specify my wishes legally in that case. So let me say it here, so there’s no question or mistake — if I were in a persistent vegetative state where I had no brain activity and a large portion of my brain had atrophied, like in the case of Terri Schiavo, I would rather be taken off life supporting measures and allowed to cross over peacefully into the afterlife, instead of lingering indefinitely.

Continue ReadingLiving Wills

Frustration

I think the thing that bothers me most right now is that there are so many things I’m not supposed to do. In any given day, I do probably 40 or 50 things that are now on the list of restricted activities that aren’t allowed lest they give me congestive heart failure and leave me in a Terry Schiavo-like state. From carrying groceries in the house to climbing out on the roof to replace the bulbs in my security lighting, stuff I do all the time is a big fat no-no. And it’s making me pissed off at life.

I know my house isn’t the cleanest house on the planet, or even the most organized, but I do have some pretty stiff routines and things operate like clockwork. And now the springs seem to be popping out of the clock and I can see stuff falling apart all around me.

I know lots of people have volunteered to help, (my girlfriend most of all) and I appreciate that a lot. But actually asking them to do that is hard. And when I do ask, sometimes it’s hard to coordinate getting the work done, because they have their own lives, too. And god love ’em, I don’t think some of them have any concept of the amount of stuff I do in a single day. I have a list of furniture that I need to move around to make my recovery more convenient, and one of the people I asked said, “oh that will only take a couple of hours.” Unfortunately it will take about 7 or 8, actually.

I have roughly 3 weekends left before surgery to accomplish everything I need to do. Stuff that’s an absolute must:
– going to court to testify against the guy who was stalking my girlfriend (April 4)
– a sleep study to figure out what to do about my sleep apnea (April 5)
– implementing all the recovery guidelines and recommendations, which includes…
– re-arranging furniture so I can sleep and so care-givers can help me
– cleaning the house a certain way to ensure sanitary conditions
– getting a living will
– getting my taxes done
– a weekend trip
– considerable work on my website since I won’t be able to touch it for awhile

The other thing that sucks about this whole deal is not just that my day-to-day routine stuff is disrupted, but my big one-shot projects are all on hold, too. It’s not just that I won’t be able to mow the lawn every week, it’s that I planned on aerating the lawn this spring and putting down 40 pounds of grass seed. It’s not just that I have to weed the flower beds each week, it’s that I need to put down 800 pounds of mulch on the flowerbeds.

Stuff I planned on doing this spring that I now will be delayed in doing, due to my stupid heart:
– aerating the lawn
– mulching the flower beds
– cutting the pipes out of the kitchen
– repairing the drywall behind the kitchen sink
– painting the kitchen cabinets and walls
– repainting the foyer in a different color
– jackhammering out the stairs at the side of the house and the useless stairs in back
– hauling the extraneous queen box springs to the dump
– refinishing the small book case and the large chest of drawers
– tearing the bathtub out of the working bathroom downstairs
– helping Stephanie cultivate and plant a garden at her house

GRRRRRRR.

Continue ReadingFrustration