Charting A New Course- 7/31/2012

Hi All,

Sorry it's been so long between updates! I've delayed posting because I'm just not sure what to write about. I do have a few heart updates (wait for it...) but not really enough to fill a blog.

I guess I feel like it's time to make some editorial decisions around here. Now that my heart drama is not providing daily blogging fodder, I need to chart a new course. (Whew, I used "fodder" and a sailing term in one sentence. Maybe this blog should be about pirates or colonial Williamsburg.)

Or I could go a different heart route; more about living with this condition as opposed to having this condition. I've gotten quite a few messages from people (that I don't know) who are dealing with dilated cardiomyopathy (DCM if you're in the biz). The common theme of their messages is (beside how hilarious and gorgeous I am)  that it's nice to hear someone say the things they've been thinking.

Because the thing about this disease is that if you have it, it's always on your mind. Maybe it gets pushed to the side for other activities or experiences, but at the very least, when you have a quiet moment, DCM takes center stage again (it's quite the diva).

I found this reader tracker and it tells where my adoring public is from. I have to say, I had no idea I was such a hit in Poland! (Latvia, obviously, but Poland??)

Entry	Pageviews
United States	4591
Russia	110
Germany	96
Canada	79
Latvia	57
United Kingdom	47
Malaysia	45
Australia	41
Luxembourg	36
Poland	34

And while these numbers are scant by blogger standards, knowing that there are people in each of these countries who went to the internet in search of answers and kinship and finding someone who understands...well, knowing that makes me want to keep up with heart stuff and not just blog when I have some big health update like a hospital stay.

Because the beauty of this blog for me has been the outpouring of love and support I've received from my family and friends. It's been tremendous and I'm quite convinced it's why I'm doing so well. But it turns out the blog can help other people too, so I think that's the course I'll chart for awhile.

Here are some topics I think I'll write about:

• Explaining DCM to others 
• Perks of DCM
• How DCM affects your loved ones
• DCM and having a family
• Sympathy- love it or hate it?
• Planning for the future
• Am I sticking my head in the sand?

Riveting stuff, eh? I'm expecting my Pulitzer prize notification any day now. Anyway, I hope I don't bore my dear friends and family. I'll try my best to not get overly technical and will keep peppering the blog with comedic genius (remember where I made a joke about the Mayo Clinic and a sandwich? Ha!).

Oh, and heart folks, please feel free to comment, ask questions, or send me a message. I'd love to help any way I can and it's a real treat to hear from you.

Much love to you all,
Jana

PS, My update from my cardiologist visit went pretty well. My latest echo (heart ultrasound) showed my EF at 20% and 30%. Yeah, it's only supposed to be one number. The doc said she didn't know why the report said that, but my heart pumping action looked the same.

However, the good news is the size of my heart had decreased slightly since my original diagnosis. Wahoo! She was also happy with the exercise test I did in May. She said that 49% number isn't very telling in people with DCM but the other indicators showed a good increase in stamina. So The Punisher can take a hike.

I continue to feel good and am trying to increase my exercise tolerance this summer. I have this pipe dream of being able to jog at cardiac rehab so we'll see what the doc says about ramping up to that. You never know!

The Punisher 5/16/2012

Hi All, 

So with this heart thing, something I always look forward is hearing test results. For me, they quantify a disease that confounds me on a daily basis. They validate what's actually going on. Much of the time (if I'm not pushing it) I feel good. Normal. I look normal. I sound normal. I'm perky and joking around. So it can get easy for me to start thinking I'm blowing this heart thing out of proportion, giving it more weight that it really has. 

Then I get test results and I'm reminded what the official story is. 

A few weeks ago I did a cardiopulmonary exercise test. This is the test where I ride the stationary bike for as long as I can, while the doc steadily increases the resistance. The point is to measure my exercise capacity and see how well my body uses oxygen and makes carbon dioxide (both indicators of heart function even though those sound lung-y).

I did this test 2 years ago and didn't do too hot. I wasn't at my sickest (this was about 6 months after diagnosis) but I was still totally wimpy. Like "can only go up 4 stairs without stopping for a break" wimpy. I feel a million times stronger now (uh, I can SO go up a flight of stairs without stopping now), so I was ready show this test how the cow eats the cabbage.

They hooked me up to heart monitors, a blood pressure cuff, a pulse reader that is styled like an 80's jazzercise headband, and had me wear a mask from the Hannibal Lecter collection. They wanted me to be comfortable, you see. Then we were off to the races! 

The first 10-12 minutes weren't too bad. Tiring, but okay. Then the doctor (who I'll now call "The Punisher") started cranking up the resistance. Ok, now my heart hurts. And my lungs hurt. And I feel like I'm gonna barf. The Punisher says "Go! Go! Go!". I wonder how I can barf with the mask on. But I keep plowing ahead. For a full 18 minutes- not too shabby.

I told the doc I felt way better about this test compared to the last one. Like worlds better. Plus, I can do so much more in my day-to-day life. I was stoked. 

Then I get the results today. 2 years ago, my score was 50% (normal is around 80%). This time I was at 49%. Now a 1% drop is nothing to even pay attention to; it's essentially equivalent. But to me, the problem is that I thought I was going to knock this one out of the park. Obviously, not be normal, but at least see a good size jump. And I got nothing. 

The threshold where this test becomes an indicator for heart transplant is about 35%. So I'm doing okay, but slipping into the 40s is a little disconcerting. I guess it just makes me feel like my body is lying to me when I feel so good. 

In reality, this test result isn't that bad. It's more of a non-event. But it is causing me a little unsettled feeling tonight. I'm sure by tomorrow it'll just be one more test to add to the pile.

The upside is I now have a doctor called "The Punisher". Very professional wrestling, huh? : )

Lots of love, 

Jana

The land of milk and honey- 5/5/2012

Hi All!

My dear friend Rosa asked if I quit writing the blog and I told her I hadn't  done it lately because nothing very interesting has happened heart-wise. But I guess that's news huh? :)

So here's the run down:

Hospital stays: Not since mid-November. I hate to say this, but I miss it a little. Where else are you treated like a celebrity, given apple juice anytime you get a hankering, and wheeled anywhere you want to go (as long as that is the x-ray room or the CAT scanner)? Nowhere. And all this for a mere $3,000 per day.

Sparky action: Not since mid-November

Energy: Pretty excellent. Most days I can do 3 "things" (a "thing" is like a trip to the grocery store, laundry, happy hour, rehab, going to a movie, school. There are obviously priorities there...happy hour and movies. Oh! I found a place around here where you can do both! That was a happy 2 hours.)

Heart Rhythms: Mostly good. Nothing that has required Sparky attention (see above) but I still do have lots of skipped or extra beats that make me lose my breath for a second and my eyes get big and I gasp. Not a big deal except I do find that it happens at inappropriate times, like when the librarian says "these books are due on May 14th" and I gasp. Or when a gentleman introduces me to his wife. 

Cardiac Rehab: Quite well. My time on the bike and the treadmill is increasing and I rarely feel like I'm going to pass out (this is a marked improvement). Since I've become a real fixture at that hospital, the parking lot attendant and I have formed a bond. His name is Abdul and he's from Somalia. He always says "Hello my friend!" which I totally like. He also tells me how Somalia is the land of milk and honey, has perfect beach weather and is full of lovely people. He routinely encourages me to visit. I haven't broached the issue of piracy yet. We're not THAT good of friends.

Up Next: I have my big cardiologist appointment in late June, but I've learned those things are incredibly anti-climatic. She will probably just tell me we'll just keep plugging along and see what happens with my heart. The one thing we'll look at is my heart ultrasound to see how much blood my heart is pumping with each squeeze. Last time it took a dive to 17% (from about 24%. Remember 60-70% is normal) so we'll see what happens. I'm expecting it to be in the 20-25% range but honestly, there's no way to tell. It's not really connected to how I feel. However, it is the main test to determine how close I am to heart transplant time, so it's very important for that reason. So we'll see!

All things considered, I feel great these days and I'm very grateful for that. I'm happy as a clam, and all is well at Hotelli Morrelli. What more can a girl ask for? : )

Love to you all,
Jana

Happy New Year!

Hi All,

Happy new year! Ah, a new fresh year and so what if it is 2012. Pish posh. What the heck do the Mayans, Hollywood, thousands of authors and the quack on the corner of Yestler and Boren know about the world as we know it coming crashing to a halt? Nothing, I say.

Ooh, guess what- decommissioned Sparky 1.0 arrived! When I got the replacement defibrillator/pacemaker last year (Sparky 2.0), the Medtronic sales guy asked if I wanted to keep 1.0. Um, yes please. For many reasons.

1) It is hands down the most expensive thing we've ever had in our house (excluding the actual house).
2) Who needs a coffee table book to start a conversation when you've got the world's smallest paramedic to show off.
3) It's engraved with my name!
4) They say you can't sell it, but they obviously haven't heard of Craigslist. (Just kidding Mom! And the pacemaker crime squad!)
5)Sparky 2.0 needs a pal.

So 1.0 is now lovingly displayed in the coffee table basket that holds our remote controls, bobby pins and cloth measuring tape. Tada!

Speaking of Sparky 2.0, he's been cool as a cucumber with no interesting events whatsoever. The extra anti-arrhythmic meds I started in November are working beautifully and have put the ablation surgery off indefinitely. Yahoo! When I first started them, I was so tired I thought I'd have to go for the surgery because I couldn't take being that wiped. Like can't chew or hold up my head wiped. But that went away after a few weeks and all is well.

I've been feeling really great the last few months (except for those bad few weeks) and it's just glorious. I got through finals just fine (whew) and was able to enjoy a fabulous few weeks of vacation with family. Nick and I did the Christmas road show from Ada, OK to Austin, TX which included eating as much Mexican food as time would allow, going to see Tin-Tin, shootin' (not shooting) at cans, and laughing it up. Good times.

I just started back to school- hold on to your hats folks. Statistic and Finance. Who cooked up this pairing? Oh well. So I'll be knee deep in Excel holding a financial calculator for the next 10 weeks (See you in March).

I am glad to say I'm way more calm about this quarter. School is certainly hard, but I'm realizing that too much stress makes me sicker so there is a time to just lay off the books. The good part is I've learned to follow through with that a little better. From the beginning, I saw going back to school as a way to learn to deal with stress in a way my heart could handle. Trial and error is the name of the game. And I've learned the key is listening to my body. When my heart starts to hurt- stop. No pushing through, no toughing it out. I hate that, but it does pay off.

Well, here's to a happy, fun, healthy, safe, blessed, inspired new year!
Much love,
Jana