Sept 27: Cardiologist update

Saw my local cardiologist last Friday, so here's the update.

First regular echo since the surgery last year. There was a stress echo in December to evaluate the pressure in my lungs with exertion. It was dramatically better than before the last surgery. This is the first regular echo to evaluate the rest of my heart.

Left atrium is still enlarged. Disappointing because the LA was enlarged before the first two surgeries and both times it returned to normal, at least briefly. Dr. Hammer is hopeful it will not increase, maybe decrease over time. Only time will tell. Potential badness would be it stretching out enough to damage my heart's normal pacemaker and put me into atrial fibrillation. A Fib is common in older people, means the top part of the heart doesn't contract but just "quivers" like a bag of worms. It's not good in people with mital valve problems, because then there isn't a contraction to help the blood flow through the MV.

Mechanical mitral valve looks like it's working perfectly. Small regurgitation back into the LA, but that's normal after replacement. Beats severe regurgitation, which was what lead to the heart failure and rest of the mess.

Repaired tricuspid valve (the less important one on the right side between the top and bottom) also looks good, just trace regurgitation, which is normal. Also beats the severe regurg from before.

Left ventricle has maintained it's shape. This is really good news. The mitral valve is made up of two leaflets that are sort of shaped like hot air balloons, with the ropes attached on to the inside walls of the LV. These ropes, called cordae tendineae, help the LV hold it's cone-like shape. When most valve replacements are done, they leave the posterior (rear) leaflet, which is the smaller of the two, in place so that there is still some tension to help keep the LV shape. In my case, since the opening (annulus) of the valve and the LV itself are so small, they had to take everything out. Dr. Cohn (surgeon) told me he had taken out every piece of tissue he could to make the cavity as large as possible on the basis that it would help more blood to enter more easily through the small opening if it was going into a cavity that is as large as possible. The Fellow (senior cardiac surgery resident) told me that the had "never seen Cohn work as hard" as he had on my heart trying to give me the best possible outcome.

The right ventricle still hasn't improved. It is hypokinetic, meaning that it doesn't squeeze well. This more typically happens after someone has had a heart attack to the muscle that has died off. In my case it is because of the damage done by the extreme pressures that built up in my lungs passing on the high pressure to the RV. It was supposed to get better. Dr. Hammer is still hopeful.

So, what does this all mean? Well, I'm much better than I have been for the last four years. I'm still not feeling as well or able to do as much as before I got sick. But, it's only been a little over a year since the third surgery, so there is still hope for improvement. There is, quite literally, no one to compare me to or to look at for a gauge as to what comes next. Uncharted territory. Anybody's guess. Sometimes being unique really isn't a good thing.

I still tire, often feeling it at the consistent time of 2:00 to 3:00 in the afternoon. I recover more quickly now, which is good. If, however, I get overly tired (as I did the day the friends were here to work on the basement) it seems to take me days, even 10 days, to feel better again. Annoying thing: I still can't crouch. You know, like you do to get something off a lower shelf? After only about 30 seconds I start getting dizzy and lightheaded. I still can't cross my legs for more than 10 minutes at a time or else the same thing happens. Best guess is it's the extra work needed to push against that pressure. Peeing--as I continue to mention--is still a central issue. If I'm busy going around doing physical things then I don't go to the bathroom. When I get home and am resting on the couch is when the kidneys seem to kick in again. This indicates that while the heart is allowing me to do things, it still isn't functioning enough to do some of the basics, like completely perfuse the kidneys, although it makes up for it quickly.

So, what's next?

Right now the most imporant thing that I can do for myself is to lose weight. The less mass my heart is trying to support, the easier it will be. It was a battle to maintain my weight, which returned to Spring 2004 levels, and not gain more. Now I'm really attacking it, helped by the treadmill desk and walking slowly but for longer periods of time. I've slashed my food intake to about 1,000 to 1,200 calories a day and eat disgustingly healthy. Despite all this, I've only dropped 9.5 pounds in 6 weeks. So far, no one's noticed, but my clothes aren't as tight. The minimum amount of weight off is another 13.5 pounds, which would be about 23 pounds less than I've been currently hauling around. In Cohn's opinion it's another 20-25 pounds. For a 45 year old female with a sluggish metabolism that's a really tall order. Especially since I can't do a lot of exercise. But it is the single most important thing I can do for myself, the thing that has the greatest chance of my staying stable, or possibly improving, over the long haul. So that's what I'm concentrating on.

So, I'll post my gains in exercise and the losses on the scale and hope for the best.

Thanks for checking in, Laurie

Sept 18: a few follow-ups

It's only been 11 days since my last posting--seems like more. Not sure why.

Cleaning out continues. Three friends from church came up last weekend and did MAJOR stuff. The basement is starting to look really organized, the garage showing slower improvement. A lot more stuff to go through, of course, so had them leave boxes out to force me into coping with things. Kim cleaned my bathroom, Carol changed my bed and did laundry, Rick did lots of stuff--all of them were wonderful.

Just posted ad for apartment on Craig's List. A couple of responses, one asking about dogs despite my saying 'no dogs' in the ad. Barking, too many chances to step in left over dog poop, and getting the dogs next door into a frenzy. Someone coming over Sunday (hopefully). Crossing my fingers....

KC only walked on the harnass well that once. Sorry, Deneen!

Not only did the patient from the other week recover wonderfully, he and his daughter came in for his first office visit yesterday! It would have been great to see him, but I was coping with a patient who became a vomiting wonder (a NUCLEATED vomiting wonder, mind you) during, and for 45 minutes after, her pharmocologic stress test. By the time everything was taken care of, the VW moving to the back of an ambulance and finishing the stress test on the poor patient that waited through all of that, the two people I really wanted to see had left. But not before his daughter dropped off a bag with a "Thank you" angel and cards. The first from the family expressing their appreciation, the second signed by the patient saying "Thank you for saving my life" and signed with his full name (which just struck me as a particularly funny thing!). Obviously, I burst into tears, causing moderate concern from the patients in the waiting room anticipating their stress tests.

Now, it's me, so it can't be that straightforward. More thorough inspection showed that it was the daughter who actually wrote everything but the signature. The patient had a slighly different reaction to being resuscitated. It seems that he had a wonderful near-death experience (NDE): tunnel, warm, beautiful light, happiness. After having my tube out of his throat he proceeded to berate his daughter for letting me pull him out of the warm, happy place! Sigh. Some days it's just impossible to win.

On the bright side :) this story is more reinforcement that what comes after this is so much better than this world. Unless you commit suicide--those are never good NDEs. Really. I did a paper on NDEs for a psych class, and anyone who had them after trying to kill themselves had a terrible, negative experience. But ones that happened from unintentioned incidents were always wonderful. Stories like this were why I was not afraid to die. (Well, except while tottering on the edge of the abyss. There's still the fear of the unknown.) So maybe this is the larger lesson: reassurance that death is not anything to be afraid of. Hope this helps.

At the end of the busy weekend day of cleaning and all, I turned that familiar shade of ashen gray well-known to many of you. This week I worked four full days in a row and am feeling very tired. It's a really deep tired that needs a few days to recuperate, which is why it's a good thing I don't work the next three days.

Thanks for checking in, Laurie

September 11: Yup, not letting it go.

Once again I am stunned at the lack of recognition of the anniversary of this terrible day. Scanning the news headlines on AOL there wasn't one mention, nothing on the nightly news. So, as long as this blog keeps going, there will be something here. 2006 there wasn't anything, but I was still in so much pain there wasn't much thought of anything else.

In a folder that holds e-mails, articles and news of that day (yes, there is actually a folder!), I found this poem. There is no author listed. I've changed a few things.

We face an election that is, quite possibly, the most important of any in the last 50 years. Our diversity has always been the strength of the USA, our differences making a stronger and better whole. But we seem to be so caught up in petty squabbles and selfishness that the larger issues are neglected. If only we could have kept the unity that developed in the days after 9/11.

ONE

As the soot and dirt and ash rained down,

We became one color.

As people helped anyone they could,

We became one class.

As we fell to our knees in prayer for strength,

We became one faith.

As we whispered or shouted words of encouragement,

We spoke one language.

As we gave our blood in lines a mile long,

We became one body.

As we mourned together the great loss,

We became one family.

As we cried tears of grief and loss,

We became one soul.

As we retell with pride of the sacrifice of heroes,

We become one people.

We are

One color

One class

One faith

One language

One body

One family

One soul

One people

We are The Power of One.

We are United.

We are America.

In Memoriam

The many victims of the WTC Towers, NYC and the Pentagon

The Courageous passengers of Flight 93

and those who knowingly made the ultimate sacrifice

FDNY, NYPD and PAPD

NEVER FORGET

Please mark this anniversary: light a candle, hug a firefighter or cop, thank someone in public service, make an appointment to donate blood. What has happened to our country and our world is a direct result of that terrible day. Don't let the tragedy have been for nothing. Small gestures can affect the world. Don't wait for it to be "someone else"--let something good start with you.

In Peace, Laurie

Sept 7: LONG catching up (at least you were warned!)

Well, everything is off the fingers and typing is easy again. The middle finger still doesn't bend all the way, still a little swollen, but is coming along. Still some bruising around the knuckles.

This past Friday marked the last scheduled week of working 4-5 days a week. While my checking account is not going to like the reduction, the energy level should be higher. Although I've been very pleased with how things have gone. Not sure yet if the Tues am will work out, the new doc admits that the training to do what he wants would take at least a year and he wants some one ready now. We'll see.

Now that I'm feeling better there is a ton of stuff to be done which is necessary for the whole cleaning-out-the-garage goal. And it's going through things that no one can help me with. Currently I'm attacking some of the many boxes of my late aunt's stuff that I've been storing or crating around for the last 15 years. It's much easier to throw out other people's things. Hundreds of pictures, mostly unlabeled, and a huge number of slides. These are people and places that Barbie cared about, but they mean nothing to me. Of course that doesn't mean that they can just be thrown out, because I have stumbled on a few gems, in addition to some interesting papers and letters. But it's almost depressing that all these cherished memories mean nothing when that person is gone. Barbie did a lot of traveling, and it's neat to see pictures she took of places that I've gone to as well. Some of the shots are eerily similar. And obscene number of pictures of her dogs, which reminds me to cut down on the number of cat pictures I have!

In the good news/bad news department: my tenants have turned in their notice. This is good on a number of levels: the husband has the same last name as me, and while his wife usually uses her maiden name, her first name is Laurie. No kidding. Two Laurie Brooks in the same house. When I was moving, I made sure to put everything under my formal name, but there are still mistakes--obviously. The most recent was my coming home Thursday night and finding a card under my door from the County Sheriff's office telling me there was a civil suit filed against me. I was racking my brain, trying not to get too worried while not being able to not worry, kept calling the office Friday. Finally found out that it was for my tenant, not me. (Why the don't put names on those things is beyond me--really--no name.) But it means I can raise the rent and find someone who will help with yardwork and snow shoveling, which they wouldn't do (despite my offering to take money off the rent). But the bad news is that taxes are due, and I'm probably going to lose at least a month's rent plus have to make some upgrades.

OK, now for the story you've been waiting for.... Patient comes in for a stress test to be cleared for kyphoplasty (fixing spine breaks), major illness is that he's a dialysis patient. Walks in with his daughter, down the hall to the prep room and gets changed. Nuclear tech comes in to start the IV and give him the nuclear material. He puts the tourniquet on the patient's arm and the patient suddenly slumps over. So Tim, the nuc tech, says to the daughter "Does he do this a lot?", thinking maybe he's got dementia or something. The daughter says "No, never" and has to hold him up in the chair. Tim comes to the next room down where I've got a patient on the treadmill and says "Uh, Laurie, there's a situation in the next room that I think you should take a look at." Tim's big into understatement. He also took the time to close the door on his way out (!) and, as I open the door, I hear the unmistakable sound of air leaving the body of someone who isn't breathing. (If you don't know that sound it's almost impossible to explain.) I feel for a pulse, already knowing, and he doesn't have one. He just died, sitting in the chair about to get his IV. So we swing into action, get the patient up on the table (well, I couldn't do that part), I got him on the monitor and there it is: textbook coarse VFib. Doctor's doing compressions, get the defibrillator hooked up, shocked twice. Rhythm, no pulse. So I get the intubation equipment, almost unable to open the plastic wrap and wondering how in the hell I'm going to do this with my right hand splinted and sutured. Well, all those years of intubating in bathrooms came in handy, and down the trachea it went. After a little oxygen, suddenly there was a great pulse. Police were there by then, EMS a few minutes later. By the time he was on the stretcher he had a great BP. By the time he was in the ER he was awake. Straight into the cath lab to our outstanding interventionalist who found his right coronary artery blocked the entire length by a big, bad clot. He opened it up, got him up to CCU. There were some issues over the weekend, but he steadily improved. On Thursday after dialysis he went to a telemetry room, supposed to be discharged today or tomorrow. No brain damage. (Yeah!)

So, at least for a little while, I'm the Golden Girl. While those of you in EMS will see nothing remarkable about the intubation, it doesn't happen in medical offices. Only one of the docs I work for will even attempt it. When you're in the hospital, anesthesia comes and does it. So the cardiologist doesn't really have any need to keep up that skill. So they are just pleased as punch, and very proud of me. I'm sucking up the warm fuzzies for all they're worth! And, honestly, I really needed this. It's been hard to step back, to adjust to the mental changes and memory loss from the surgeries. And not running as a medic, or being in the hospital, has kept me from really feeling that my being there makes any difference. This time it did.

Being right there makes a huge difference in successfully reviving the patient. In 25 years in EMS, almost 20 as a paramedic, I only had four patients who I revived that walked out of the hospital. Lots I got back who died in the ER or ICU (which gives the family a chance to say goodbye), but after being without oxygen for the approximately 10 minutes that usually pass between the emergency being recognized, 911 called, EMS dispatched and arriving on location and then getting to the patient and starting treatment, there is little chance of a patient actually surviving, or not having major brain damage. (PLUG: This is why everyone should know CPR and where the AED is located in public places!!!) But I have a great save rate as a PA (5 out of 7) because everything and everyone is there within seconds.

And in the office, I could swear that there was a faint smile on the ghost-like face as it faded away, the scythe disappearing last.... (All right, a little overly dramatic!)

In other news: I tried putting KC in a kitty harnass and going outside and he did rather well. I've always wanted a cat that could be taken for walks! Mom's wrist is getting better and better. She's doing PT to strengthen and it's coming along nicely. Oh, I hit someone in the Camry; her fault. She made a right turn on red and then came into my lane as I was traveling in the direction of traffic on a green >> yellow light. Slammed on the brakes, impact < 10 mph, no airbags, just paint off the bumper. So it needs to go to the body shop for two accidents now. So much for getting a red car that would be seen better and hit less!

Oh, and did I tell you all that Katie's pregnant?!?!?! I actually put the news in my post after coming back from Ohio; we had gotten our signals crossed and I thought it was public. Fortunately, Katie is much better at blogging than me and went in and took it out, hopefully before anyone noticed. Due in February (I think!). Matt and I want a girl, Katie wants another boy (much easier with clothes, etc.) Suspense builds....

Well, that catches you up on everything. And it's time to get to bed before a busy Monday.

Thanks for checking, Laurie

P.S. Kevan: There hadn't been need for a tube in over four years, so you'd better have more than me!