May 26: Just stuff

Very busy without a whole lot of anything particularly interesting. I work tomorrow, Friday, in this new wonderfulness that increases my monthly paycheck. It does, however, tire me out substantially. We also had an unusually difficult day at work today complicated by being scheduled with 12 patients (10 the norm, routinely do 11), the truck that delivers the nuclear material breaking down and delaying our start (especially bad with so many patients), a significant nuclear camera malfunction and a rather cranky nuclear tech who was working the day after her colonoscopy with too many things going wrong. So, with all that, didn't get to finish my coffee until noon or have lunch until 1:30. I function quite well with rests, today didn't include any. So very tired going into my third full day tomorrow.

There is a blood drive at Fellowship I'm coordinating for Saturday which is now threatened by the Red Cross Strike. It will involve me being there from 9-4 or so. Am I a bad person for hoping the strike causes it to be cancelled? I'm soooo tired....

Got new glasses, which was very overdue.

Worried about Tabitha who doesn't seem to be eating very well. I'm hoping it's only that she needs her teeth cleaned, which involves anesthesia. Expensive and a little dangerous at her age.

Currently five days into wearing the long term heart monitor. Trying to keep it hidden, which I think has been managed so far. No phone calls from the cardiologist's office, which probably means they haven't seen anything interesting. This is good, for obvious reasons, but it would be nice to know there was a reason for the fluttering, thumping and flip-flopping I feel a few times a day. On the bright side, having less boob and a prosthetic on my right side is a nifty place to conceal the sensor. (Bet you didn't see that coming!)

I was discussing an ECG with my immediate superior, ME today. Standing next to him while he was sitting using calipers to diagnose, he all of a sudden says in the middle of a clinical sentence about the ECG "So, your valve seems to be working well." I think it finally hit him when he actually heard it coming from my body. He has not said anything to me since my case got complicated, expressed no interest even in a physician-oriented way being faced with a unique patient problem in his specialty. Maybe he will appreciate my will to recuperate more. Or maybe he was just irritated by the sound and had to make a comment.

For those of you wondering, yes, you can hear my valve clicking. Not all the time, and it needs to be quiet. Most people don't realize it and just think it's a loud wrist watch. But if you are within a few feet of me you can hear it, which fascinates some and horrifies others. Natalie, the MA who works with me all the time, can hear it from across the stress lab, but I think she's paritularly aware that it's me making the noise. While I don't hear it all the time, it still catches me off guard after four years. What bothers me is when I'm lying down on the couch or in bed and can not only hear it clearly but also feel it at the back of my throat. This, they tell me, is not usual. It's like I've swallowed a watch. Suspicion seems to be the combination of excess scar tissue combined with destruction of my pericardial sac probably is why I can feel it like that. It's annoying, and still bothers me despite the fact that I've had to deal with it for coming up on four years. It's also a frequent reminder of my illness, one of the reasons that I've said in the past that there is no way I can ever escape and forget about my heart for any period of time. The defect is omnipresent in my life.

Currently suffering the effects of the suddenly hot and humid weather. The two window units are in my bedroom and study, which also cools the living room. The kitchen/dining room 'L' shape, however, is currently not cooled because with the replacement of the windows the openings are too small to accomodate a unit large enough to cool the space. Nelson, my wonderful handyman extrordinare, has convinced me to get a portable unit which will vent out a window, hopefully to go in this weekend.

OK, gotta pack a nutritional, low-cal lunch for tomorrow. Thanks for checking in, Laurie

May 17: Cardiology appointment

Maybe shorter and more often....

A couple more people have told me that they are still reading, so it's at least 5 of you. And, of course, a few people over the years have admitted to being 'lurkers', which sounds much worse than it is!

Had my routine cardiology appointment. Need to get my cholesterol checked on the Crestor, had too many myalgias on the Zocor. Haven't lost weight. Sigh. Will be getting a monitor soon to check the dysrhythmias. I told Dr RG that my suspicion is that there are two areas which are sending out the extra electrical impulses: one in the atria (top chamber) and the one we know about in the ventricle (lower chamber). I don't get them daily, sometimes only once a week, but then will get several in a 24 hour period. No commonalities that I've identified. Will wear the monitor for three weeks unless we get lucky and I have a bunch in the first week. So it will probably be a month or so before there is any news. And chances are it will only be 'watchful waiting' at that point, because treatment options are limited.

I noticed something a few weeks ago that I didn't discuss with anyone until there was independent correlation, and that was today. (It should be addressed with my internist, although she doesn't really impress me but does prescribe whatever I ask for without seeing me, so until someone better comes along she'll do.) Anyway, I've developed a hernia in my upper abdomen, right around where the xiphoid is (where the ribs come up and meet in the middle). This is a very strange place for a hernia to develop, they usually appear around the navel area or below. But this one is right over where the chest tubes were repeatedly put in, so an area which was cut open over and over. I know they were there for the second and third surgeries, can't remember the first, although everything is pretty hazy after that one. It hurts, especially after the exam where he's pushing in and saying 'Does this hurt? How about this?' and also hurts sometimes when exercising. Sometimes it doesn't bother me for days, other days frequently.

There is only one treatment for a hernia, which is to put mesh under the muscle wall to keep the intestines from getting through the opening, in addition to trying to close the opening. This, you may recall, was the point of the thoracotomy for the lung hernia, although that's keeping my lung in my chest. (Yes, I still feel it hitting against the mesh.) So that's surgery, a type that is relatively minor, generally only an overnight stay. But no surgery is minor when you are on coumadin. Getting this fixed would mean going into the hospital at least two days in advance, having stopped coumadin before that, and being put on IV heparin to keep blood clots from forming on the valve. There are other drugs which can be used (Lovenox) but they are not approved for mechanical valve patients who, you have read here, are at the highest risk for blood clots. The heparin, which only stays in your system for 6 hours, is then stopped 6 hours before the surgery and would be restarted about 24 hours after, along with the coumadin, which takes several days to hit therapeutic levels (INR). And, of course, that increases the risk of bleeding from the surgical site. So, for a mechanical valve patient, this simple surgery turns into about a week in the hospital, especially since I need such high levels of the coumadin, which therefore takes longer to hit therapeutic levels.

So this is why it needed to be discussed with my cardiologist, who is adamant that I be hospitalized on heparin, especially as he points out the obvious, with my complicated history. As much of a pain as it is I wouldn't risk it any other way, because of the stroke risk, not to mention the risk of a blockage in a retinal (eye) artery, kidney area, or peripheral circulation (toes & fingers). For all the people who kept saying 'why didn't they just replace it during the first surgery?'--this is why. I'm very grateful that my cardiologist is so firm on the heparin, because that gives me the support I need for what the safest course is.

With the weather in it's current pattern it's been a tough day pain wise, although sometimes there doesn't seem to be a reason for the pain to flair. My sternum is particularly bad, I have to remind myself every hour or so to take a very painful deep breath to expand the lungs, otherwise my breathing is quite shallow so as not to move the chest wall as much. And the right shoulder/scapula area hurts. And the foot is flaring up. And my lower back with all the collapsed discs is killing me, also radiating down into the left hip. I feel about 90, possible more. Makes me understand the suggestion to old people to move to dry Arizona.

Will address mood next time. The cats are all lined up staring at me because it's 15 minutes past supper time. To their credit, no noise has been made, although KC will start up as soon as I head towards the kitchen. It's amazing how much racket a 13 pound bundle of fur can make when he feels his food schedule is being unfairly tampered with.

Gee, not so short! Thanks for checking in, Laurie

May 4: Pretty profound

It doesn't do any good to apologize anymore, and Carol may now be the only one checking this blog at all! Life goes on and now that things are stable (NOT boring, stable!) there just isn't as much that I think you would find interesting. So, with the thought that there may only be a couple people still reading this it allows me to really pour my guts out....

I've been fighting a battle against depression of late, something it took me a while to admit even to myself. I've been on anti-depressants since before the second surgery. I tried to come off them a couple times, but found myself getting angry over everything and feel much better on them. This is not an uncommon phenomena for those who have been on heart bypass machines. Something changes your brain chemistry. Obviously with the number of times I was on it is reasonable that there would be permanent changes. It's something I've accepted. 

But this is different, sometimes overwhelming, and took a while to figure out. The extreme difficulty is over, I'm pretty well adjusted to the 'new normal', my pain levels are fairly consistent and predictable. Sneezing still hurts a surprising amount, but I can lift a 20 lb container of kitty litter. I'm functioning at a higher level than was ever predicted. It's time that I go back to living my life. And therein lies the problem: what life?

Most people over the age of 40 looking back would change something in their past life if they had things to do over again. A lot of that comes from experience, or sometimes the choice not taken. The standard comment from older people is 'I wish I hadn't worked so much' or 'I wish I'd taken more chances'. Hindsight is, as they say, 20/20.  Life, however, doesn't give any real 'do overs.'

My path was not the typical one for most women in my age group. I didn't date much in high school, then went to a all-girl's college for two years before transferring to Temple. Then I dropped out to become a paramedic and was very careful about dating. Girls in EMS in the '80s were often looking for husbands and I wanted to be taken seriously. As the youngest paramedic in Bucks, and at the time one of the only females not a nurse, I knew people were chomping at the bit to jump on any flaws of mine. So I wasn't giving them the ammunition with my personal life. But, sadly, since all I did throughout my 20's was be a paramedic and work my way through school, I never developed a social network. Then I became a PA and had to go into debt. After the roller coaster of my father's constant job changing and always living in fear of financial collapse this was particularly horrible for me. So, I worked full-time as a PA during the week and a paramedic on the weekends. Partly that was financial, but part of it was that I truly loved being a medic. So, no social development in my 30s. Not only that, but I didn't ever do much interesting stuff, because there wasn't enough time.

After I turned 40, had a great paying job, a beautiful house and my dream car, it was time for a re-evaluation. This is, of course, a very common time for people to do that, with the recognition that they are probably half-way through their lives. And I realized it was time to start living. There was money in the bank, money going into retirement accounts and I wasn't getting any younger. So I decided to start with my lifelong dream of a trip to Egypt. It was my 'ta-da' trip: I had no responsibilities to a husband or kids, had a house and career. Time to start living the life--in a totally responsible and fiscally responsible way, of course.

And you all know what happened after that trip to Egypt.....

So now that crisis and the immediate aftermath is over. But there isn't much of a life to return to, because everything that made up my life from 'before sick' isn't there anymore. Yes, I still have the same job, but not any extra money. The house is gone. The car is gone. Almost every friend has either disappeared or just drifted away. There isn't any family to support me or have much involvement with as they have lives that don't include me except on the periphery. So there isn't really anything to go back to. I can't regret working so much, because the financial stability I'd worked so hard for over the years was how I was able to survive. And my work ethic was a major reason that I kept my job and, of course, the benefits. So while I wish on some levels that I'd been able to achieve more balance in my life in the past I can't fault myself for making the decisions I did as those have given me the options most people suffering from a continuing medical crisis don't have. While my planning wasn't perfect, I do congratulate myself on several very good financial decisions made in the past. And the reason those were possible was because I'd worked so much.

So now I find myself in the wretched position of having to create a life for myself at the age of 48. I feel well enough to get out and do some things, but not physically able to do anything very interesting. I don't like to talk to new people about my illness, because that's not who I want to be  identified as and it isn't as central to my life as it has been for the last seven (SEVEN!!) years. But those limitations still have a major role in my daily life. And because of my past decisions I don't really have any experience in how to have a life. So what do I do? Where do I go? How do I start?

These are, you realize, rhetorical questions. Because only I can decide what to do next. But this has been leading to me kind of wandering around in circles without direction. And I have a tendency to retreat to the safe cocoon of my house, where there are books and TV and kitties. I seem very outgoing when I'm with people, but it's actually an effort. As an only child raised in a very rural area I've always been used to a lot of alone time. And after the last several years of having to be content with these things it's difficult to put myself out in the world. But I know I have to, it's been put off long enough.

So I am trying. A couple weekends ago I made a bold leap and went on a women's retreat with one of the UU Fellowships closer to me, only having spoken briefly to a couple of the women. It went well and now I need to follow up on some of those connections. There is a 'Time Bank' here in Pville that sounds interesting. I'm trying to initiate social get-togethers more, although my house is still too messy to invite anyone here. This is being hindered by a sudden increase in demands on my schedule--not much specific, just stuff. But it's unbelievably difficult for me, taking constant 'pep talks' to myself. (BTW: just this month I'm now starting working at least half the Fridays. Great for finances, but of course limits my activities as it saps my energy levels, requiring more recuperation time as well.)

Maybe this is what now needs to be followed by anyone interested in my journey, although it lacks the excitement of a life-and-death struggle. But sometimes the hardest battles are the quiet daily ones. That was true during my recovery, and it seems to be true now.

My next door neighbors, a 30ish couple who were very nice to me during the tenant debacle of last fall are quietly getting married tomorrow. I'm going to put together something little for them involving candles and crystals--nothing much, but just to give them something that feels celebratory, which a wedding should be. It's a small thing, this kind of reaching out, but a start.

So thanks for checking in, Laurie