Feb 27: And then the fall--literally

So, back to last Sunday: I'm home. I'm in a great mood. I'm starting to think about changing my outlook from being chronically sick to stable. I'm so excited. Lots to do: pick up my mess around my house/apartment (depends on how you look at it--it's only about 1,000 sq ft), light cleaning, grocery shopping, trying to get to the movie theater for one of the Oscar-nominated movies.... And in the morning, carrying some books down to the basement, I misplaced my left foot just slightly on the 2nd or 3 step from the bottom and fell.

I was distracted, thinking about all the things to be done and deciding what to prioritize to do before getting too tired, and just as my weight was coming down on that foot I knew something was wrong. But you know how you get to a certain point in a physical movement and while your brain might register that something isn't right your body can't pull back in time? I've sprained my left ankle probably a dozen times over my life, the last time July 2004. I am sure that the use of crutches then was what pushed my heart over the line and into heart failure because I became severe in August 2004. So, the ankle is weak and doesn't take much to re-injure. I went down, hit my left knee, left hand on the way down, landed partially on the ankle and partially on my butt (which can take more trauma then the ankle!). Kept telling myself to breathe, remain calm, mentally inventoried everything, reviewed the incident to be sure I hadn't had a run of that V Tach and briefly passed out, decided it was just a slip of the foot. Figured it was still better to get up on my main floor, so slowly moved up the stairs on my butt. Dragged myself to the couch and just rested for a while. Eventually struggled back downstairs to get a quad-cane my mom had left. Hunkered down for the day.

Did a great Quasimodo up to the garage Monday morning where I also got my crutches. Discovered that the crutches were great for the ankle, but really bad for the chest with the non-healed sternum. Went to work, then to the podiatrist who saw me before. The ankle joint was swollen to the size of a baseball and looked really bad. He was impressed. Are you surprised? Do I ever do these things by halves? No, of course not.

Once the x-fays ruled out it being broken, he introduced me to the concept of a 'bone blister'. This is apparently something that happens with those on coumadin: the tiny blood vessels inside the bone start oozing and form a blister on the inside of the bone, which then expands and damages more bone. Consider the damage this summer to my right hand when I banged the knuckle on a cabinet and it bled into the tendon sheath--it's still slightly abnormal, and this was a lot worse. And with the amount of swelling and bleeding into the joint it will affect the healing of any muscle/ligament/tendons that are damaged. He even broached the dreaded "S" word (surgery, in case you didn't get that), which is just a massive big deal when you are on coumadin. I don't even want to go into that description now.

Honestly, I barely made it home before I lost it. I'm just so tired of coping. I'm tired of being strong. I'm tired of looking on the bright side, finding the silver lining. I'm tired of one damn thing after another. I'm tired of being sick. I mean really--12 hours after getting back from Boston?!?!? 12 hours of feeling more positive?!?!? Apparently that was 12 hours too many.

The next 24 hours were really rough psychologically and spiritually. I even briefly questioned the existence of God, and I've really never done that. It wasn't a good feeling. And, regardless of my anger at the situation, it didn't last. This is not punishment. I'm not doing anything wrong. God does not have it in for me. There is not a battle for my soul going on between God and the Devil. Although I haven't ruled out being the butt of a colossal karmic joke--that's still a possibility.

After my existential crisis I returned to my usual pragmatic self. And coped. With help. I sent 'Uncle' Bidge to a couple stores and eventually settled on an office chair with wheels, then he rolled up the rugs, which allowed me to get around the one floor using a cane and the right leg. It worked rather well except for the do-hickeys in-between rooms. Those require a delicate dance of standing with the assistance of the cane, hopping over the little ledge and balancing against a wall, then pulling the chair over and plopping into it without letting it roll away too far. It can be a little tricky. Bidge also did my grocery shopping. Then my loyal friends Kim and Rick came over Tuesday night and helped me out more, did the basement steps several more times, got as much stuff as possible off the floor, helped me get showered (well, Kim did!).

Wednesday I went to work and in the afternoon I was fitted with this weird "air cast". It fastens on with a lot of velcro straps, weighs about 7-8 pounds and can be personalized with inflating/deflating these air bladders in the sides, also allowing me to walk with one crutch, relieving the pressure on my chest. And, for some reason I'm not entirely sure of, the swelling went down dramatically.

Thursday I called a nice woman at the Valley Forge Christian College (VFCC) who someone told me about. She sent out an e-mail requesting help, and within hours there were phone calls from at least six students offering to help me for the reasonable price of $13/hour. One came over last night and got me supplies from the basement, kitty litter from the garage, took out the garbage, stayed while I showered, did the dishes, etc. Another one is coming over tomorrow to do some cleaning and errands. I SO wish I'd known about this place after the last surgery.

The girls in my office have been just great--carrying things, getting my coffee, holding doors for me, scolding me for moving too much. And lots of people have called and checked on me, e-mailed offers of assistance and cooking.

I am not being punished. I am not being taught a lesson. Sometimes bad things just happen to one person. Over and over. And over. Sigh.

So, I go back to the doctor Monday night, but it sounds like the bleeding into the bone won't be ruled out for another few weeks. And I leave for the England/Italy trip five weeks from tonight. Next week is really busy: extra days at work balanced out by shorter days but several hours of lecturing at PCOM's P.A. Program. As always, it could be much worse. But Lord, this has gotten really old.

And just to put the icing on the cake, my 2 1/2 yr old cell phone totally bit the dust. I'm sure the new one is going to be wonderful as soon as I figure out how to use it. I'm on call now and this weekend, so it was a necessity. All things considered I'm really not feeling like expanding my limited grasp of technology right now.

So, it's time for me to go to bed. Added to the list of things to do this weekend is to re-read "When Bad Things Happen to Good People", just for the reassurance. Laurie

Feb 25: Good News. Then...Bad News....

Well, I only have about 30 minutes and there's much to report, so this is probably going to be a two-parter. I wrote a lot from the hotel room in Boston, but for some reason the majority didn't save while typing and it was too late to re-do the entire thing.

Boston: it was a great visit, entirely worth the trip and continuing to be seen at Brigham. Friday the 20th was an action packed day: chest X-ray, echocardiogram, stress echocardiogram test, appointment with surgeon Dr. Cohn, appointment with cardiologist Dr. Baughman. There were several concerns to be addressed as this was my first visit since September 2007, two months after heart surgery #3. My last echo with my local cardiologist was about six months ago and was a little bit worrisome: my left atrial size was still up and my right ventricle was still very hypokinetic, as bad as if I'd had heart attack damage in that area. And the continuing concern that my left ventricle's response to having everything cut out of it would be to dilate and become dysfunctional. Well, the news was all good! My left atrium has returned to 3.9 cm (above 4.0 is enlarged), the right ventricle is squeezing wonderfully (it looks different because of the tricuspid repair surgery, but squeezes well) and my left ventricle is functioning perfectly! And the better news is that Dr. B says that if the LV hasn't started to change now that it won't, unless the valve fails or I develop coronary disease (no history in the family, but that hasn't helped up until now!). I lasted for eight minutes on the treadmill (incline 14 degrees, speed 3.4 mph--low average for my age) although I was exhausted for hours afterwards. So, everything is as good as it can be under the circumstances--great report.

So, the issues will always be that I have a tiny valve opening and will get more out of breath and fatigued then other people, there remains the split in my sternum (which is painful every day) and the opening in my right back from the lung surgery. The fact that I have a mechanical valve clicking away which means the damn coumadin.... I did broach the issue of the sternum with Dr. Cohn who made a face and said, in a very discouraging tone of voice, "Do you really want to discuss another surgery for that? I mean, let's face it Laurie, your body just doesn't like surgery." All things considered, I'm willing to just live with that for now.

And no one yelled at me about my weight!! They all raved about how great I looked, because they have never seen me except after major surgery and/or in heart failure. So, the bar was pretty low--they saw me for the first time not in heart failure, no surgery for 18 months, with hair nice and make-up done. From their standpoint I looked phenomenally better! I probably won't get away with that again, however : )

There was one big issue that I had chosen not to post and didn't talk about until a week ago. Throughout my life I had felt my heart doing funny flip-flops, going fast, going too slow. After the initial diagnosis I wore a heart monitor for three weeks and it showed a really fast rhythm with little exertion (walking to the bathroom with a heart rate of 120-130), extra beats (PVCs) and what's called an idioventricular rhythm where my rate would drop to about 35 beats a minute. All of that got better even after the first surgery. I continued to have PVCs (everyone does) and saw them during the times I was monitored, so knew what they felt like. Then about six months ago I started feeling different stuff. I knew they were coming from the ventricles, but it felt like more than just every once in a while. Then in November there was an episode that lasted for about 30 seconds and was so bad I thought I was going to pass out, felt really horrid for about two minutes. It scared me. I called my cardiologist and got another monitor for three weeks and we got a surprise: short runs of VT--ventricular tachycardia. Several 3-beat runs, one 5-beat run and one 7-beat run. Not great. (On the bright side it proves once again that I don't exaggerate!) My local cardiologist wanted me to go back on beta-blockers, which I was on before and flatly refused--if you remember, I felt horrible the whole time they were mandatory. And after the 5-beat run I got blood work done and found my magnesium level was low, which can cause those bad beats. Googled what foods contained high amounts of magnesium (pumpkin seeds, brazil nuts & almonds) and started eating some every day (but not before the 7-beat run happened) and found that they really decreased. So, I presented all this along with the EKG strips to Dr. B and we decided that it wasn't anything to get worried about. I certainly have a lot of scar tissue, which can lead to these, and that combined with a slightly low magnesium level probably brought them on. But it's not worth taking medication daily that makes me feel horrible constantly, it's not worth trying to burn out the scar tissue and it's not worth getting an internal defibrillator. If it gets worse, then we re-evaluate.

So, I came back from Boston Saturday night, Feb 21, in a great mood. Felt the most hopeful I have for the last five years since the horror began. Arrived about 11 pm and slept soundly, woke Sunday able to finally relax and stop worrying about getting really sick and being disabled in the next few years. Yeah!!!

And then while carrying some books down to the basement I tripped and fell down the last few stairs....

Clearly I survived, and it's now almost an hour later, so I need to get ready for bed. I'll post soon with the bad news. Thanks for checking, Laurie

Feb 19: Back in Boston

So, it kind of sneaked up on me, the rescheduling of my overdue follow-up at Brigham. This time I drove up, which I wish that I had done before. By the time you drive to the airport and park, go through security, get there two hours before the flight, then the flight, then getting to the hotel. Lots of energy expended and about six hours of time. As opposed to driving, which took about six and a half hours and was really pretty easy. And I could shove everything that crossed my mind in the car, especially nice in the winter when you don't know when things will suddenly change.

I'm staying at the same hotel where I was for the lung surgery and the third heart surgery, as well as a couple follow-up visits. There's a lot to be said for being in the same place over and over, especially when it works well. It's within easy walking distance of this great place called Coolidge Corner, which has almost every type of store that you could need for a short or medium stay: several different restaurants, two pharmacies, a fantastic bookstore with the best organized used book area I've ever seen, my bank, a great ice cream place, office supply store, post office, even a little community movie theater. There's a medium grade hill to go up, but a place to rest with benches about half of the way and that means going downhill on the way back to the hotel. There's also a neat fusion Asian restaurant across the street, which also has the trolley line and a stop right there as well. Honestly, it couldn't be more perfect. It was neat reaccquanting myself with the well known street and stopping into favorite shops. Although it will be too early to walk another direction to the community park with it's own beautiful rose garden.

I gave a long update, but for some reason it didn't save. And I've got to go to bed. So, more tomorrow. Laurie

Feb 18: P.S. to Feb 16 post

There is one thing that I distinctly remember saying in reaction to the diagnosis: "Well, at least now I won't live long enough to get the Alzheimer's everyone else in the family gets!" Seriously--lots of long lifers on both sides of the family who get some form of dementia. So not pretty.

That black sense of humor is something that anyone who worked with me as a paramedic is familiar with--and sometimes it really comes in handy. On a call for "respiratory distress" I arrived to find the patient dead as a doornail--no breathing for some time, so certainly no distress. My way of phrasing to the family? "Well, there's some good news and some bad news. The good news is he's not having any problems breathing...." (And, in my defense, I also emphasized how peaceful the death had been.)

I've been accused of being callous, irreverant or "terrible" in thinking of things this way, but hey, if it makes me or anyone else able to handle a tough situation better, then how can it be wrong? In some situations the 'silver lining' is buried pretty deep and you need to be somewhat creative. So be it.

Thanks for checking, Laurie

Feb 15: 5 year anniversary tomorrow

February 16, 2004 was the day that I walked into my office and said that I needed an echocardiogram. I'd been back from Egypt for three weeks and was having the worst asthma attack I'd had for 10 years. The pulmonologist had me on huge doses of steroids, plus mini-nebs every 2-3 hours. My coughing and wheezing had substantially decreased, so I'd decreased the mini-nebs, but I still felt horrible. Terribly short of breath and almost not able to function from the fatigue. The pulmonary doctor had put me out of work for two weeks, and that Monday I was trying to work a half day. I did an admission from the ER and was feeling so lousy that I just wanted to go home. But the day before it had occurred to me: what if there is more wrong than just my asthma? Why am I not feeling any better even if my lungs seem improved? So, I figured that maybe I had caught some strange virus or bacteria in Egypt and had developed a myocarditis, which is an infection that causes inflammation of the heart muscle. It made sense.

Unbelievably, I never listened to my heart. I can't say why. I just didn't.

So, I told my boss and came to the office to get an echo. I was very good--I didn't look at the screen while the tech got the views. Why look? Myocarditis often doesn't show even on an echo, and that's certainly what I had.

My first clue that there was something was when the tech wouldn't say anything, just asked if the doctor was still there. I just said "Oh". I don't remember having any other thoughts. I just wanted to get dressed before ME came in the room, since getting an echo involves being naked from the waist up and you don't want to be dealing with co-workers just wearing a paper vest which conceals nothing. And all the goo from the echo (which is an ultrasound) is messy and gets everywhere.

My second clue was when ME wouldn't look me in the eye when he came in the door. Just said with a strange tone of voice "Well, let's see what we've got here." Then he pushed the play button and, for the first time in my life, I saw the image of my heart. In one second I knew what was wrong--it was that obvious. It was horrible, the worst I had ever seen. A massive, thick, abnormal mitral valve with leaflets flopping all over the place and two jets of blood going backwards.

The first thing that went through my mind? "My life is never going to be the same again." I don't think that I was capable of processing more than that. It was shock. Total shock. Disbelief. Just that life was now permanently, irrevocably, terribly altered. And I hadn't had a clue.

ME asked me why I hadn't told him before that I had mitral valve prolapse, to which I responded that I hadn't known. He said I had to have known, I said I didn't. This was repeated a couple more times, almost like a comedy skit, except there was no laughter. The fifth time he said, with voice raised, "Laurie, you had to have known--this is really bad!" And, as much as I could raise my voice while gasping for breath I responded "I can see that, but I DIDN'T KNOW!!!"

How could I not have known? How? How could this have been inside of me without my having a clue? I'm a cardiology physician assistant with 10 years of experience. How could I not know? How did this happen? Why had no one ever heard anything?

One of the other cardiologists walked by, ME called him into the room and told him that he would be looking at my echo, tried to give him a heads-up before he saw the screen. RL couldn't contain himself--he was so shocked. All he could get out was "Oh my God...."

Yeah. It was that bad. The worst any of the cardiologists that I work with have ever seen, with about 100 years experience between them. To this day in the office, my valve is what other people's bad mitral valves are judged against. Although they seem to have managed to diminish it somewhat over the years....

I was short of breath with a racing pulse because I was in moderate plus heart failure. How could I not have known? The pulmonologist was pretty freaked out as well. He had made the mistake of only listening to my lungs, because that's what was wrong. Known history of asthma, only 41 years old, clearly wheezing and with a low pulse ox and borderline pulmonary function tests. It was my asthma.

It's a toss-up as to which the worst day of my life has been: February 16, 2004 or February 28, 2007, which was when I was told that I needed a third open-heart surgery. For the first one I was in shock, I was so calm that ME and RL didn't think that I really understood just how bad it was. Even after they said the words "heart surgery someday". It was just too much to process. So my emotions just shut down and I was very calm. I actually left the office to go to the other hospital and do a consult in the ER. Drove home, stopped at the grocery store, went in the house and just sat on the couch, staring at nothing.

I don't remember having a reaction then. Despite several phone calls and saying it over and over I remained eerily calm. I'm sure that I had a reaction at some point in the days that followed, but I don't remember it. The whole thing was so unbelievable, so surreal. How could this have happened? How could I not have known?

The consult in the ER? A 49 year old woman with advanced ALS--Lou Gehrig's Disease. One of the worst diseases to have. Gradually increasing paralysis with full ability to feel pain and full mental function. She was short of breath, so the decision of whether to be on a ventilator while waiting for the paralysis to hit her heart or to just die more quickly of the respiratory muscles paralysing was going to need to be made. I finished the consult, walked out of the ER, leaned against a wall and had a talk with myself: "OK, what you have sucks. It isn't fair. You didn't do anything to deserve it. Life will never be the same again. But at least you don't have a deteriorating neurological condition with no cure or real treatment for. There are plenty of people worse off than you. No whining." Nothing like a little perspective.

As I mentioned before while describing my reaction, there's a lot of repetitiveness in what goes through your mind. A lot of the same words repeat, because, well I don't know why. Maybe because the brain is so overwhelmed that normal variations in expression are just stunned. I've seen it in other people as well after a major shock or emotional trauma.

So that's the story. This day in Laurie's history. Thanks for checking in, Laurie

Feb 4: Wear Red Friday!!! (We interrupt this blog....)

February is National Heart Awareness Month.

Here are the facts:

Heart disease is the:
-3rd leading cause of death in women 25-44 years old
-2nd leading cause of death in women 45-64
-1rst leading cause of death in women older than 65 years old

-More than 50% of women will die from heart disease over the course of their lives. (Only 1 on 30 women will die from breast cancer, although 1 in 9 will be diagnosed with the disease.)

-In the US, a woman dies from CardioVascular Disease (CVD) EVERY MINUTE OF EVERY DAY

Friday, February 6, is the day designated for Awareness of Women and Heart Disease.

Yup, just one day.

Every study, including one done in 2008, shows that women die every day because physicians and other health personnel, as well as women themselves, don't recognize their symptoms as being cardiac and are treated less aggressively than men. Women aren't given diagnostic tests as often, are not treated as quickly in emergency rooms, do not receive cardiac catheterizations or heart surgery as often. So much for equality.

Heart disease is a woman's greatest health risk. And lack of knowledge and awareness is killing women.

Please: Be aware. Get the facts. Get a second opinion if your doctor isn't testing you or listening to you. Be your own advocate, and be one for those you love.

And on Friday, WEAR RED and increase awareness of women and heart disease.

For more information, go to www.americanheart.org

Thank you, Laurie