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??)

United States
United Kingdom

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,

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, 

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,

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,

More drugs please-11/13/2011

My heart has not gotten the memo that I am too busy to be sick. I can't keep running to the hospital willy-nilly, I've got school work to do! Well, this line of reasoning did me no good as I ended up in the hospital for the second time in a week. Although, at least this time it was planned.

I got out of the joint last Friday and balanced a great weekend with lots of couch time, resting the ol' ticker. We had Lauren and Jeff over on Sunday to watch the Cowboys squeak one past the Seahawks.

During the cheering and gabbing, suddenly I felt like my heart was racing, my vision narrowed, knees buckled, I got sweaty and nauseated, my chest hurt like mad and my whole body went numb like I'd had lidocaine injected everywhere. I was sure it was v-tach but that usually goes away after a few seconds. This kept going and going for about 5 minutes. Usually with this stuff I just grit my teeth and bear it until it passes, but it lasted so long I started to panic at the thought that it wasn't going to stop.

It finally did stop, and I was shaky but ok. I took it easy for the rest of the day and was ok, but then it happened again on Tuesday. Nick suggested we send a remote download of Sparky's info to the doc that night. The next day she called and told me I was having a lot of v-tach and we needed to do something about it. Sparky is my insurance policy against the v-tach stopping my heart, but these bad rhythms are not good to have regularly. So she gave me my options.

Option 1- ablation. This is where she threads a wire into my heart through a vein, finds the spot of my heart that is causing the bad electrical signal and burns it so it can't transmit an electrical signal anymore. We've talked about this before but man, it doesn't sound any better no matter how many times I hear it.

This procedure is a relatively big deal and it can take anywhere from 4-7 hours. There are normal surgery risks and also the remote chance of puncturing the wall of the heart. But this could permanently fix the v-tach and make it a non-issue. My doctor is fantastic at this procedure but I was still hesitant to jump right to this option.

Option 2- Increase one of my meds that controls v-tach. This may or may not work, but there isn't too much risk with this one, just the possibility that they will make me feel more run down, maybe to the point that I can't do my normal activities.

After a lot discussion, I decided to try to the meds first and see what happens over the next few weeks. If the meds don't work, we'll go the "burn the heart into submission" route.

So I've been on the extra drugs about 3 days now and I have to say I can tell they are taking their toll. I've been way more tired than usual and I'm finding I have to rest between things like taking a shower and getting ready or stopping halfway through doing the dishes. There is a good chance that this will ease up as I get used to the drugs, so I'll hope that's what will happen.

I go in for a check up in 2 weeks so we'll see what happens during that time. I'll keep you posted!


So much beeping- 11/5/11

Sigh. I'm tired. But for my public, I will carry on! (Oh, I do love the thought that I have a public)

It's been a very long few days but thought I would share a little about what's been going on since I've been a little sketchy with the details. Sorry Mom!

School has been going well- hitting the books hard and heavy. And this week was the start of the real challenges. Our first midterm and 24 (ok, not 24 but it feels like 24) other assignments.

Well, in the middle of all this, on Wednesday, I started to feel lousy. My blood pressure was tanking, my chest hurt (mildly) most of the time, and I was having weird heart rhythms that reminded me of v-tach. (V-tach, you'll remember, is when my heart starts quivering instead of beating and if it goes on for more than a few seconds, I pass out and Sparky shocks me back to a normal rhythm)

So I decide to go to the ER on Wednesday after talking with my doc and Nick. Nick was going to meet me there, and since I was feeling better by this point, I was going to drive myself over.

Ok, here is where I get the tongue lashing. Yes, I should have called someone to drive me. I do have lovely friends who would help me in a heartbeat. But I get really sick of playing the resident Golden Girl and needing rides to the hospital. So I took the bull by the horns and hopped in the car.

I got about 5 minutes down the road and I started feeling super dizzy. I felt my muscles jerk and I pulled over immediately. I thought maybe I'd had a Sparky shock, or at least been paced out of a bad rhythm.

So I pulled into an Ethiopian grocery store parking lot and called 911. The fire truck and ambulance arrived and took me on a fancy ride to the hospital. I like to make an entrance you see.

So the docs check me out and after some tests they determined that my heart wasn't leaking those enzymes that signal some more heart muscle has died- whew. They also determine that I didn't have a Sparky shock, but I did have some really short runs of v-tach. So in order to figure out why that's happening, they checked me in.

By now, I am a regular pro at this hospital routine. I know the docs and nurses and techs on the heart floor- 5NE is my wing! Kind of like my 'hood. I'm popular. I show the new folks around. But this trip, 5NE was full. What? I thought "Hey man, Jana Morrelli's in the house, clear the decks!" I guess they thought "patient # 4343592 needs a bed. Where can we shove her?".

So I got shoved to the "ICU Overflow Wing". Sounds glamorous doesn't it? Picture it- 6 beds lined up , divided only by curtains. In the belly of the hospital, not a window in sight. Beeping. Oh, so, so much beeping. Bosnia-esque I would imagine.

Suffice it to say I was pretty offended that they would dare put me (ME!) into this hobo healthcare situation. But after some pain meds and sleep deprivation, I decided that it would do just fine.

Well, the morning came and I realized I was being a world-class snoot. The nurses that ran the joint were amazing. They knew my medical history backwards and forwards, they watched my vitals like a hawk, and waited on me hand and foot- generally treating me like I was Kim Kardashian. It was awesome.

So the docs ran me through a battery of tests to make sure my wimpyness was not the result of some super serious thing. It wasn't. They did another ultrasound of my heart and ejection fraction (how much blood my heart can pump with each squeeze) came back at 17%. It was 35% last time.

So I freaked out and the docs furrowed their brows and whispered and after a while they said that even though the number was way less, the images looked almost identical to last time, so they think the reading was off. Whew. 17% is solidly in heart transplant territory. So I dodged a bullet there.

It seems that the achy heart and irregular rhythms are just going to be par for the course. They tweaked my meds and hopefully that will ease those symptoms, but probably not completely. Rats.

After all the testing and poking, I ready to blow that joint by Friday. I had tickets to see a comedian (Kathy Griffin!) that night with my girlfriends Stacey and Liz and I was NOT going to miss the show. So I told the docs that we needed to get me out of there by early afternoon. That is no small feat. Remember, hospital time is like football time. 5 football minutes means 20 and 1 hospital hour means 6. But everyone banded together and got me out in record time.

It was honestly so sweet. Doctors were calling in favors to get tests rushed, my nurse stayed through her lunch break to type up my orders, and the pharmacist called in my scripts for me. It was incredibly kind and I appreciate it so much!

So now I'm home (and the show was great!), resting on the couch. Figuring out how to merge school, health stuff, and a splash of a social life is proving to be a juggling act, but I am really happy. Life is moving along and it's not going ahead without me. I like it. : )

Much love,

Hobbit-ish 10/14/2011

Hi All!

It's been so long since I've written- sorry about that!

Wow, where to start...

Health stuff first- I've been doing really well lately. I'm feeling good a good portion of the time and my heart hasn't been acting up. The worst that has happened is some annoying beats from my pacemaker, and the doc even managed to get rid of those with a device tweak.

In other news- I started business school! It's a pretty big undertaking. My days are filled with lots (and lots) of reading with a bit of calculating thrown in there for good measure. It's been a while since I lugged a huge textbook with me to the nail salon, but my feet were starting to look a little hobbit-ish and I had to get a handle on that. Cong (the lovely pedicure gentleman) and I talked a bit about economics while I got my toes done. He agreed with me mostly, except about price control theories. Just kidding! We totally agreed about that.

So even though school is a lot of work and is tiring, I think I've got a pretty good routine going. I do most of my work pretty far in advance, so if I get tired I don't have a deadline looming over my head. That has come in handy already. The other day I was just exhausted (like the kind of tired where it's too much work to hold up your head or chew). So I just called it a day, and felt much better the next morning. Worked out fine.

Oh, I also went with some of my best girlfriends for a weekend away and we had a killer time! Wine, dancing, laughing, wine, food, get the picture. I felt great the whole time and when I got home I felt like I was almost completely back to normal. And I loved it! And then I saw the pictures. And there we were- having a great time, but I was sitting down in almost every picture. I didn't even realize it. That hit me in a few ways. 1) I had an awesome time and didn't feel left out at all. 2) I made do and sat down when I needed to. 3) This feels normal now. I don't even recognize that I'm making accommodations. It was a little sad to see myself sitting down while everyone else was dancing around. But it was also totally awesome that I was there, laughing and living it up with the girls. And guess who stayed up until 1am? That's right folks! I'm a regular night owl now!

Nick is, as always, my biggest cheerleader and has also turned out to be a rockstar economics coach. I mean I *knew* he was good at this stuff in business school, but, like, he's REALLY good. So we may need to start a tutoring side biz. Hey, I'm not going to business school for nothing. You see an opportunity, you jump on it! (That lil' gem of advice was free. Keep your eyes peeled for my get-rich-quick book, "Jana's 114 Step Plan to Getting Rich Quick", hitting shelves in early 2022)

Alright kids, I've got a date with my honey and 2 episodes of Dexter.
See you cool cats later!