Vacation Time

I was on vacation two weeks ago, and it was awesome. I wasn't sure how it was going to be, coming just two months after my pacemaker was inserted. First of all, I was a bit nervous about the trip. Resting somewhere in the back of my head was the thought that both the episode of afib I had last May (my first) and the one back in January which took months to finally clear up came just a few weeks after I had flown down to Florida and back. Second, this vacation would be to Phoenix and Los Angeles, places that sounded hot to me. Finally, I was afraid my wife had more planned for us than I would be able to handle.

Well, although I am waiting with bated breath to find out whether the trip and return will trigger an afib episode, I am pleased to report that I handled the Phoenix heat just fine, and Los Angeles just wasn't hot at all. Plus, in terms of having too much physical activity, I pushed myself far harder than my wife did, and it turned into the best part of the trip.

I have felt very tentative about exercise since my surgery. Of course, at first it was simply a matter of recovery. But in those last few weeks before our trip, where I had been given the green light by the doctor to resume my life, I was still feeling like my stamina had faded completely away. It happens to heart patients, so I'm told. I wondered whether I would have to settle for a less strenuous life.

On our first night in Los Angeles, I was looking through the high-end magazines placed in our swanky hotel, and I noticed an issue of Los Angeles magazine with an article featuring ten hikes in the greater L.A. area. I was intrigued, because I hadn't planned out my free time (my wife was on a working vacation and left me with some solo time on my hands). I love walking, and wondered whether I could find some appealing hikes to go on. I focused on two hikes, one out at Redondo, Hermosa, and Manhattan beaches, and another at Griffith Park. I slotted in the Griffith Park hike for Tuesday.

I almost decided not to go. It was my free time; I didn't know why I felt compelled to drag myself up a hill (Mount Hollywood, in fact). Still, I drove the rental up to Griffith Park Observatory, intent on climbing the "moderate" hiking trail and getting some good views of L.A.

I wended my way up through Griffith Park, through a tunnel and to the parking lot out in front of the Observatory. The Observatory is a magnificent structure, and I was entranced. My magazine article said the hiking trail was at the back of the parking lot, but I'm afraid the observatory building just drew me in. It is a neat place, and it had the views I was looking for. Plus, you can climb up to the roof of the building, walk around the perimeter, and stand on overlooks almost everywhere. By the time I was done there, I had gotten my fill of views of the city. I decided to head back.

It was then that my indecision was at its peak (no pun intended). I had not been able to tell where the trail started, and I really had fulfilled my desire to see the city spread out below me. Yet, I am stubborn, and I had wanted to hike. The temperature was in the mid 60's. and I felt pretty good. I decided to take the long way around the parking lot and back to the car, when to my amazement, I saw the Mount Hollywood trail, right where the magazine said it would be (although it used the phrase, "on the north side of the parking lot", as if I would know which way was north). It was fortuitous. I decided I had to at least try. So I hiked up the hill.

I didn't make it as far as the magazine article described. But I did climb. I actually went much further than I thought I could. I probably wasn't a fast climber, and I do admit to being exhausted when I was done, but I believe that I could have pushed myself to the top. I had a few time and energy constraints, but I don't think I'll ever forget standing above Griffith Observatory, looking down and thinking, "I made it higher!"

I did eventually make it to the beach, and almost completed the hike suggested for the shoreline, on a cloudy windy day. I walked every day of the week I was out in Los Angeles. And by the end of the week, I could honestly say I felt better than I had in a long time. That was what made my vacation awesome.

Beat (pause) Beat (pause pause pause) Beat

One of the reasons I started this blog is so that I would have a place to record the symptoms I have. I've been having strange symptoms for at least four years now, and one of the biggest frustrations I have is that I never know what to make of them. I don't want to sound like I'm complaining, but the symptoms I am talking about baffle me and are often a bit scary.

Yesterday, for example, my chest felt funny. It was hard to define the symptoms I actually had, but basically, I felt like my heart was weak. As if the muscle was tired. It doesn't seem like your heart is a muscle that is allowed to get tired. I mean, it has to keep going for a long time yet. So that is a bit scary.

Now, the rest of my body was pretty tired, too. We spent Memorial Day weekend in New York City, and we walked blocks and blocks, pushing thirty plus pounds in a stroller, in high heat and high humidity. The apartment we stayed in was warm and I found it hard to sleep, and then I didn't sleep well on Tuesday night either. So I guess tiredness should not be completely unexpected.

However, where my heart is concerned, I get worried. In this particular case, I felt odd enough to take my blood pressure. Sure enough, my cuff, which beeps on each beat, went beep pause pause pause beep pause beep pause beep pause pause pause, and so on. I tried it three times, and all three times, I had an irregular rhythm. Is my heart supposed to do that? Probably not, but in the week in March after I had my ablation and before they put my pacemaker in, that is what it was doing. In fact, the reason I have a pacemaker is to ensure that the pauses between beats don't go on too long and make me pass out. And that seems to be working.

Yet, when I have this irregularity, I have a hard time concentrating. I seem to get dizzy, or at least fuzzy-headed. My chest and sometimes my left arm seem to hurt, and my extremities sometimes get tingly. On the other hand, I believe this happens more often when I am extremely tired. So what to do?

I could have called the doctor, but I didn't. I did not believe that I had developed afib, plus I had noticed the same irregular rhythm on the day I last went to my doctor, and they had looked at my heart and not seen an afib condition. So I decided to take a Tylenol PM and sleep on it.

When I woke up this morning, my chest felt better. I felt somewhat refreshed, although still very tired. Of course, when I take Tylenol PM, it sometimes takes many hours before I feel like the drug is out of my system. I worked all day and didn't worry about my heart. However, around seven o'clock, I started feeling pretty drained again. My fuzzy-headed headache, left arm aches, and discomfort in my chest was back. I'm going to sleep on it again, because I'm not sure what else to do.

Back to Work...The Office Edition

So this week was another milestone, specifically, my first days back in the office. Due to some rather strange circumstances, I work out of two locations: New Haven, CT and White Plains, NY. When I am helping my wife out by bringing our girls to day care, I work out of the New Haven office, which is closer to Alecia and the girls. When I do not have to bring the girls to day care, I go to White Plains, which is the office I started working in and so is kind of the "home office" for me.

On Tuesday, Alecia had to attend a funeral for a coworker. In addition to this being a very sad occasion for her, it became the first time she needed me to take the girls since the doctor cleared me to drive last Wednesday. With my parents out of town, there weren't too many other options. So off I went.

I was a bit anxious about going back. I mean, I have a desk job, so it isn't all that strenuous. But the thought of being trapped in a location where I cannot easily take a break was kind of daunting. Plus, several of the afib incidents I had at the beginning of the year started when I was sitting at my desk. There is still the nagging suspicion that the stress of work is one of the triggers for my condition. I know this is a ridiculous thought, because the reason my heart goes afib is because I have a congenital heart defect. But it is sometimes hard not to be superstitious.

The mind also plays strange tricks when you are facing a change like going back to work after being out on disability and modifications for two months. One of the mistakes I made in going back was that I "forgot" to tell my boss my plans. I didn't tell him last week. I didn't tell him on Monday. Worst of all, I didn't even tell him on Tuesday when I was actually in the office.

My reasons for this boneheaded move are a bit obscure, but I think they come down to one thing: I was afraid. First, I was afraid that if I told my boss that I would be back, he would make me come in full time, and I would no longer have the option to ease back in, or even decide that I couldn't work in the office every day. This was ridiculous given the fact that my boss has been so understanding, but the fear was there anyway.

The second fear I had, and the one that was probably had much more to do with my forgetfulness, is this: for the first three months of 2011, it seemed as if each time I went in to the office, I would have a recurrence of afib, and would end up back in the hospital. I thought that if I just didn't tell anyone that I was back, they wouldn't make a connection between me working in the office and going to the hospital. And call me odd, but I feel as though it is important for my relationship with my coworkers for them not to wonder (any more than they already do), if I'll be in the hospital the day after they see me. I know it is not quite rational to think that way, but it is as difficult as anything else I've been through to try and help my co-workers deal with my frequent absences due to my heart issues.

Of course, my decision to sneak back into work like a thief in the night was not the best. Late in the day, my boss needed to fill out an asset validation form for the computer I use in New Haven. Since he didn't know that I was there, he sent the teammate who works in New Haven with me to find out what the validation number on the computer was. My teammate, being practical, came over, got the number, and went back to his desk. After finding out what he had been doing at my desk, I felt compelled to tell my boss that I had actually been sitting there, and then my boss felt awkward, presumably because his request to my teammate made it seem like he couldn't keep track of where his employees were. That was not my intention.

I made sure to tell him that I would be in White Plains today.

Thank Yous!

It has been a little over a month since my surgery, and I have just been cleared to get back to lifting, driving, working, and all the rest of the pieces of a normal life. Which left one thing to be done.

One of the things that is amazing about being sick is the response you get from people. The day after I came home from my sternotomy, for example, food was delivered to us from my wife's co-workers at ESPN. We had known that they were going to get us some grocery supplies to help out while I was busy recovering, but the poor delivery person had to make a multitude of trips up our stairs to get all the food up. I'm talking about four or five trips from a delivery woman who is used to hauling quite a bit up in a single trip. It was simply amazing.

A few days later, I opened the door, and found a box outside. From the look of it, it was flowers, which is kind of what you would expect. But when I opened it, I found that my guess was only half right. It was actually flower bulbs in three flower pots, plus a beautiful window box to put them all in. My first thought was that it was nice that someone knows me well enough to know that I would enjoy growing the flowers rather than getting cut flowers that wouldn't last, and my second thought was that it was going to be neat to show my girls how the flowers grow. The gift and two cards filled with well wishes and signatures, had come from my co-workers at AT&T.

The final surprise came a few days later, right before Easter. Two more boxes had mysteriously landed at our door and when we brought them inside and opened them, we found two green wheelbarrows stuffed with Easter goodies for the girls. Best of all, each wheelbarrow was personalized with the name of one of our girls. What a great gift! Like the food and the flowers, it was something that would help the girls feel special and perhaps let them know that the world was a good place. It was another gift from my co-workers, and I was touched.

I still find it hard to say why, but the food, flower bulbs, and wheelbarrows meant more to me than anything else our co-workers could have done. I guess it meant to me that they know me and Alecia well enough to know that our primary concern as I was recovering would be in taking care of our girls, and making sure they weren't picking up on any stress we might have. I think that is why it touched me so much to get those thoughtful gifts. I didn't need gifts to know that all our friends were thinking of us, but it really meant a lot to know that they were there to help all of us.

So of course, being brought up with some manners, I really wanted to say thank you to all those people who gave us gifts. In fact, on the day we got the groceries, we were so touched by the generosity, that I immediately wrote an e-mail and sent it. But being somewhat traditional, I wanted to do more.

Now the tradition at AT&T is to pin a thank you note to a bulletin board so that everyone there can see and enjoy the thank you. Since I lost count of the people on the distribution soliciting for the gift for me somewhere around thirty, I decided early on that I would adopt this method for the thank you for my co-workers.

The situation was different for the guys from ESPN, though. First of all, there were only eleven of them. Second of all, the bulletin board thank you note doesn't seem to be a tradition there (I asked my wife). Third, and most importantly, it had meant so much to us to get the gift from them. (By the way, lest I forget, the two teams had also given us some spending money - left over after all their other generosity.) Alecia and I agreed that we should give everyone a thank you note.

Do you know how difficult it is to write eleven different versions of a thank you note? I guess I could have written one version and copied it eleven times, but I kept thinking that all of the people who I would be writing to are on the same team, and might see each other's notes. And more than anything, I wanted them to know how important their generosity was to us. So I wrote eleven thank you notes.

I feel a sense of accomplishment, and maybe a slight sense of closure. I told the same story eleven times, and I do have to say that I think I made each one as personal as I could. It was actually interesting, the writing equivalent of Monet's Cathedral at Rouen series. The basic message was the same: it meant a lot to us, but somehow I found different minor chords to sound in some of the notes. I hope they convey the thanks that they are supposed to.

And now, I just realized that I have written that thank you note for the twelfth time. Thanks again everyone for your support and generous hearts!

Worrying

One of the things I struggle with all the time is that I still have strange symptoms once in a while. My wife and parents urge me to stop worrying, but I have to admit, these symptoms make me feel as though another afib incident is somewhere down the road for me.

As an example of what I'm talking about, just before I started writing this entry, I leaned up against the side of my chair. For some reason, when I want to lean, I tend to go to the left. And I have noticed that sometimes when I do that, I feel my heart skip a beat or two.

My doctor tells me that heart palpitations are a fact of life for many, many people. That is one reason that my wife and parents urge me to stop worrying when those things happen. But the fact of the matter is that I never had heart palpitations until about three years ago, and two years ago I started on my long cycle of hospitalizations. So whether or not they are something to worry about, they are something that I naturally worry about. I mean, they never troubled me until recently, and they almost seemed to be a harbinger of the troubles I've had recently.

In fact, this is probably one of my biggest challenges right now, because the palpitation I felt a little while ago was not an isolated incident, not even if I only take today into account. There were at least four times today when I felt that strange things were going on with my heart.

Now I know that it is possible, maybe even likely, that those four events were not threatening to my overall health. In fact, I've only been out of the hospital for three weeks. It's quite possible that those four events were simply a by-product of what I'm pretty sure was a bunch of extra stress on my heart late last month. And I'm quite certain that nothing that I felt today warrants a new trip down to New York Presbyterian Hospital.

So the only questions that leaves me with are these: Can I keep my mind off the idea that every strange heartbeat is a step closer to landing back in the hospital? Is that even the right thing to do, or is that a way of ignoring the problems? Can I both deal with my health concerns, and take care of the people in my life who desparately want me to stop worrying?

Back to Work...Again

A quick note...due to my relative newness to using Blogger, I started a post on Saturday and then decided to re-use that post for my post of Thursday, April 28, 2011, which is the first time I've had a chance to get back to this blog. I didn't realize it would use the date that I started the draft of the post I had intended to do, rather than the date of publication. So when reading the following, keep in mind that I wrote it on the Thursday following the posted date. It doesn't make much sense otherwise. Sorry.

Tomorrow is the last day of the first week of work since I had my sternotomy. I admit that I was really nervous about it on Sunday, but it was actually easier than I thought.

Of course, since my job mainly consists of sitting and typing on a computer, it is not a true test of my capability to re-enter the mainstream of life. Especially since I am working from home.

However, it is all baby steps, I guess. My main concern based on my endurance last week was that I would need to take a nap in the morning, and another one in the afternoon. I guess it did start out like that. But on Tuesday, I only needed an afternoon nap, and yesterday I think I worked through until about 4:30 and then logged off.

For those who are curious, I do not work the whole day in my pajamas. I have actually used my lunch time each day to shower and grab a quick bite to eat. Lunch is much easier to do when your kitchen is only meters away from your workplace.

So for today at least, I am pretty satisfied. I've gone through all my e-mail at work - approximately 1,500 messages. I'm sure most of you who work at major corporations can appreciate this figure. I'm getting a feel for where my projects are, and where my prioroties are. In short, I feel like I'm back. It's not a job I always love, but it seems like normal life, and it makes me happy to be doing it again.

Of course, in the back of my mind is the ominous fact that during 2011, I've gone back to work like this three times before, and only lasted a week or two before I was bounced back to the hospital. But that note is pretty dim in my head right now - I'm still working from home for one thing, and that makes it a bit easier. Besides, I think that having done it three times before, I can handle that if it happens again.

Oh, and one more thing. I have to have hope that the hospital merry-go-round will stop, or at least slow for a while. I don't think the doctors would put me through the pain of the procedures they have unless they were also hopeful, so I'll just cling to that and be happy that I am again a part of a place where I can feel productive and, well, normal.

Why a Blog?

I hate starting by reciting my biography, but in this instance it is a bit necessary, because the topic of this blog is the life I've led and the life I'm leading as a Congenital Heart Patient. And in order to understand where I find myself now, I guess it is important to know at least the essentials of where I've been before. So here goes.

I was born in 1970, and my parents were almost immediately told that there was a problem. I mean, they could see that there was a problem, as I was born almost two months early and reportedly could be held in one of my uncle's hands. But the internal problem was the most worrisome - I had been born with almost no separation between the two ventricles of my heart. Maybe someday I'll figure out what that means, and post about it, but for my childhood, it just meant a lot of visits to a pediatric cardiologist in New York City, a standing order that I should sit down in gym class if I got out of breath, and a few surgeries and procedures, when I was two, nine, and seventeen.

Since I turned thirty eight several years ago, I have had to restart those visits to the cardiologist with some unexplained discomfort in my chest. And about a month before I turned forty, my heart decided that it wanted to do something called atrial fibrillation. According to my doctor, the heart procedure I had when I was seventeen often results in atrial fibrillation about the time the patient turns forty, a fact that they didn't know when I first had my surgery (called a Classic Fontan Procedure) so many years ago.

I've had a few recurrences of the atrial fibrillation (a-fib), and finally had a procedure called an ablation, which has helped out for the time being, but right after the ablation I had some funky heartbeats (a.k.a. slow heartbeats), so I went right back to the hospital and had a pacemaker put in. The other bummer was that because of my heart condition, the safest way to put the pacemaker in was to lay it on top of my heart, a procedure which required them to open my chest. Blech.

So now I'm recovering from that procedure, which takes some time, and wondering what is going to happen next. And that is not just paranoia, I've been in the hospital four times in the past three months. My cardiologist, who is regarded as one of the best Adult Congenital Cardiologists in the business, tells me that patients who have had the classic Fontan often have recurrent trouble with a-fib, so we've all got our fingers crossed, but may have to deal with more a-fib at some point.

I won't lie, some days are better than others. And that's what this blog is all about, the good and the bad. While I've been bouncing in and out of hospitals, I've often wondered how my fellow Adult Congenital Heart Defect (ACHD) patients deal with similar circumstances. I'm sure there are others dealing with similar health concerns, and I thought maybe if I started writing, it might eventually help us all.