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!

"Whatever", 7th Grader Style- 8/30/2011

Hi All,

Well, the results (all 16 of them) are in- I don't have sarcoidosis! Yay, yay, yay!

Let's back up a hair. When we last spoke, I had gathered up all my gumption and told the fancy lung doctor that I didn't want to have the broncoscopy. There was wailing and gnashing of teeth (on their side, not mine) but I was able to get it postponed. But then my cardiologist confirmed that she'd like to have the test done, just so we could rule out sarcoid totally.

So I had the test and it wasn't that bad. I saw the doc this week for the results and before he told me it was clean, he wagged his finger at me, scolding me for not listening to him and "getting worked up" about the whole thing. Evidently he does not frequently get his authority questioned. I then rolled my eyes at him (Blatantly too. Like 7th grader style) and said "Whatever". Not my proudest, most mature moment, but he dragged it out of me! Whatever.

We seemed to call a truce after that and he told me the test was perfectly clean and that he was comfortable scratching sarcoidosis off the "what the heck made this girl so sick" list. He did tell me that my lungs do have a problem with how much oxygen they diffuse to my body. Somehow this isn't the same thing as the oxygenation of my blood (measured by that little thing they clip on your finger). That level is always great. This is something else. All I know is 80% is good enough. Mine was 65% two months after I was diagnosed and now it's 52%. I can't remember what the level is where we start to get worried, but for now, we'll just do another breathing test in 4 months to see if it's changed.

I also saw my main heart doc and she was happy with how I'm doing these days. She said I look a lot better, and seem to have more energy. She was pleased to hear I'm going to school but warned me about pushing myself too hard. She's definitely right- I have to watch that. My type-A side comes out something awful with school and I do crazy things. I've been known to leave a vacation early so I could get more study time in. And then make the professor cookies just to be sure the A was in the bag. (FYI, the cookies worked. But where does that pesky brown-noser rep come from?)

Anyway, I'm excited about school and the opportunities it will bring. Every time I hear a speaker or read a case study, I get so excited about work again. I can't wait to find the right fit for me down the road.

Oh and by the way, I'm now a University of Washington Husky! (Only behind the Texas Longhorns. I can't betray the Longhorns- it's in my wedding vows). Rrrrruf! (Or whatever the Husky cheer is. I'll learn it soon and get back to you).

Later gators!

Words I love to hear -7/31/2011

So one of the best phrases you can hear is "The scan showed that mass on your liver is just a little cyst, nothing to worry about at all". And I heard that this week! Ah, the sweet bliss of scratching a dreaded disease off the list. We'll just get a sonogram of my liver next year to be sure it's still not a problem. Easy as pie!

Another great thing that has happened this week is that I now have a doctor that is coordinating all my care. I mean all of it. He is working with my primary care doc, finishing up his residency. My primary care doc asked him if he would take this on because I was getting so overwhelmed with all the tests, possible diagnoses, research, etc. So the first day he got my files, he spent 7 hours (7!!) reading through all my medical notes, labs, tests and scans. He even organized all my tests into an excel spreadsheet (a man after my own heart).

Later that day, we met and just talked for an hour and a half. He reviewed a lot of tests with me, asked me tons of questions and ordered a few blood tests. I told him how frustrated I was with the sarcoidosis hunt- feeling like we've done an extraordinary amount of testing and haven't found a thing. And now they want to do a broncoscopy. It is a somewhat invasive test where I have to be under anesthsia and I'm just not crazy about the idea. The test was set for Friday morning, but I was having reservations.

My new Wonder Doc told me he agreed that the value of the test was questionable in my situation, and I decided I wanted to postpone the test. That way I could talk to my cardiologist before I did it, just to make sure it was necessary. Well, if that didn't cause a stink. When I called to cancel, the bronch lab lady was aghast that I would question the doctor's wisdom. I told her I wasn't ruling it out, I just wanted some more time. After I got off the phone, a resident that was going to be part of the procedure called me to ask if I was really sure. I said yes. She asked again. I said yes. She asked again (No joke. 3 times. Seriously). I told her I was completely sure. So she grudgingly agreed to cancel the test. I then grudgingly agreed to make an appointment with the sarcoidosis doc in a few weeks to discuss again. Good grief.

But other than all these tests and stuff, I've been feeling pretty good! I rode my bike 6 miles on Friday (whoa!) and it was totally awesome. I was exhausted for the rest of the day, but it was worth it. : )

In a few days, we are headed to Oklahoma for my brother Skylar's wedding. His fiance Sabrina is a hoot and is already a part of the family. The only snag is that it
is supposed to be 109 degrees there. *cough* 109. I've gotten soft, living in Seattle where "hot" is 80. I'm a touch worried about it, just because I tend to get dizzy and wimpy in the heat...A/C will be my best pal! But seeing the family and friends will be awesome. And Nick gets to go with me for the weekend- holla!

So that's all for now...I'm excited to see some of you at the wedding!
Much love,

Weird news de-liver-y 7/24/2011

Hi All,

Well, I don't have too long to write this morning, but I'm feeling mucho guilty about leaving you in the dark for so long. Truth be told, I wrote a killer post the other day and lost it. Just try to imagine the most thrilling, informative, hilarious, and touching 8 paragraphs- yeah, that was it.

So here is the quick and dirty...

Sarcoidosis- Still on the hunt. The last cat scan I had was inconclusive. Again. I guess there was some stuff that seemed sarcoidosis-ish, so I will soon have a broncoscopy. That's where they numb my nose and throat, put a tube down my nose into my lungs, squirt a little saline in there and then suction the saline out again. They they look at it to see if they can spot scarc cells. They doc has said he hopes this will give him enough information to decide if I have sarcoidosis or not.

I've been hoping for "not", but he did say that if I had it, and we treated it with steroids, it could actually help my heart function. Like make my ejection fraction go up (maybe to 40%, up from my 25% now). That's pretty awesome, because that has the potential to give me a lot more energy and stamina. So we'll see.

Besides the sarcoidosis, another thing the docs are looking into is my liver. That last cat scan happened to get some pictures of my liver, and lo and behold- there is a mass on it. Gulp. No one wants to hear the word "mass". Ever. It's about 1 inch in diameter. We have no idea if it's new or if I've had it forever. I have a liver cat scan set for next week to get a better look at it. If it's suspicious, they will probably do a biopsy. I am also getting a referral to a hepatologist (liver doctor) next week to get their opinion.

It could be lots of things. Of course, the terrifying one is cancer. But more likely it's just a benign lump that won't even need to be removed. Or it could have something to do with the sarcoidosis. So I had a little freak out when I first found out about it, but am doing pretty good now. I have managed to stay off the fear-mongering internet message boards (this is a major accomplishment). I'm ready to jump all over this coming week, but until then, I'm focusing on other things.

In better news, I've been feeling pretty good lately. I have been more tired the last few weeks, but I have also been trying to get more exercise so I may just be tired from that. I've started riding Nick's bike and am loving the fact that I am now a cool hipster cyclist! Ok, not a cyclist. A bicycler. Not as cool, but more accurate. To be a cool cyclist, I need to wear an ergonomically skintight outfit, have 8 bikes, and ride 60 miles a day. I'm up to 3 miles now...maybe I can build up to 60 next week.

In even better news than that- my 15 year old sister Rhetta is here! Yahoo! We've gone shopping, had pedicures, rode bikes on the beach, gone to a pinata party, watched movies- in short, had a rockstar time. I've also dragged her around to everyone I know, showing her and her dazzling personality off. She's completely adorable and a regular hoot. It's been a blast and just what I needed to keep my mind off of my liver shenanigans.

I'll let you know what the liver story is as soon as they tell me. But for now, I'm gonna scoot- we've got some sightseein' to do!

I love you all!

Fancy news! 6/23/11

Hi All,

It's so rude of me to write a blog while I'm still in the hospital and then not follow it up. How rude.

So I was released the next day, and have mostly been fine since. They are now thinking that the attacks were caused by spasming veins. Ever since I've been sick, the docs have commented that my veins seize up when they try to thread any wires through them. It's like a charley horse, but in a tiny vein. Well, it looks like some of my veins are doing that when I exert myself (both attacks came after I walked a little faster and further than I should have).

The good news is that nitroglycerine should help, and as I get in better shape from cardiac rehab (which I've been back at for about 2 weeks), my heart should be able to work more without spasming.

I did have a full body scan and 2 cat scans last week, trying to figure out the elusive sarcoidosis. I'm about ready to tell them that if it's this hard to find, do we really need to keep looking? I'll see the sarc specialist sometime this next month and see what he says, but if it looks like a wild goose chase, I'm out.

I am happy to report that I've been feeling really good lately. I definately still have some crummy days, but I've had some excellent ones too. And a few of those excellent days have coincided with gorgeous sunny days in Seattle. Driving down near the lake and the bay with the windows down, sunglasses on, and jamming to Justin Bieber? Yes please! (Oh you know when JB comes on the radio, you dig it. Don't lie.)

I've saved the fancy news for last...some of you already know due to the wonders of Facebook- I got accepted into the University of Washington's business school! I'm going to start working on my MBA (part time) this fall. I'm so excited! I'm pretty sure I'm going to need a unique job when I can go back to work (flexible hours, maybe contract work) and I think having an MBA will let me get the best job for my needs. Or maybe even work for myself, starting a consulting business. I'm so excited to get started with the next step in my life. One of the worst parts of this illness has been that I've felt stuck and without any control. No more!

I've spent a LOT of time thinking about the pros and cons of going back to school. What if I get sick and have to spend 2 weeks in the hospital? What if school makes me really tired? What if I take a turn for the worse and need a transplant? All valid points, but I'm willing to take the risk. I'll handle any setbacks that I come across and reasses as needed. My docs are very encouraging about school and think that having something big to work towards tends to help patients more than hurt them.

So come September, you can find me at UW cheering for the Huskies, getting my business on!

Lots of love,

She's a celebrity! 6/11/2011

Hi All,

Heart attack count: 2. Pain and duration of this attack: 1/3 as bad as the last one. Severity of this one compared to the last one: only about 1/10. So in comparison, this little "event" was a picnic!

Let me set the stage. Yesterday afternoon I had been asked to do an interview with our local news station- I was talking about a neighborhood initiative I'm part of. So I was out at the park across the street, doing my best Diane Sawyer impression, when the ol' ticker starting hurting. Ugh. Such a bummer. I waited a bit, hoping it would go away, but the pain was in the exact same spots as it was for the last heart attack. So Nick and I decided a trip to the ER was in order. On a Friday night. Whoo hoo.

By the way, let me explain the symptoms of this event. Women and men's heart attack symptoms can vary a lot, so don't just rely on what you see in the movies! My chest hurt right down the middle of the breastbone. You could easily confuse it for heartburn if you didn't know better. My left shoulder blade felt like it was pokingg me in the heart. My neck ached on both sides, below my ears. My jaw and ears ached. And my left arm felt like I'd whacked my funny bone. You can also feel nauseated, sweaty, and disoriented. If you ever have a spell like this, get thee to an ER!! Ok, that conculdes our public service announcement of the day.

So they decided to admit me for observation. Evidentally, the perk of chest pains at the ER is that you get seen in a New York minute (bypassing the sprained ankles and strep throats. Be prepared for lots of dirty looks as you are whisked away and doted on). The downside is there is no way you are getting out of the hospital for at least a day or two.

Right now the docs are hoping I can go home tomorrow. I will continue to have more blood work done today and through the night, checking to see if I have a big spike in the enzyme the heart releases when it's been damaged. I had a bit of a jump earlier today, but nothing to get upset about.

They don't know why I am having these events. I don't have any blockages in my arteries at all, but they are wondering if I have a bit of narrowing in some of my miniscule veins. They are too small to see, but they can cause problems like this. Some of the meds I'm on can cause this narrowing, so it's a pretty good guess. The plan is to take nitroglycerine if this happens again and see if that helps the pain. Nitro opens the blood vessles to let the blood flow freely, getting rid of the pain almost instantly.

I've asked if these events are causing any permanent damage and it looks like they aren't. I'm certainly hoping they aren't going to happen more frequently, but since they're not dangerous, I'm not going to get too wooled up over it. The doc said that if the nitro doesn't handle the pain within 15 minutes, I need to come to the hospital, but if it does, I don't have to mess with that.

So, all in all, this has been a pretty uneventful hospital trip. I've passed the time by showing each and every nurse my news story video. :)This was the LEAD STORY last night. Why yes, it was a very slow news night! Here is the video for you to show your friends and nurses. : ),0,6969625.story

I'll talk to you soon!

Taking some control- 5/1/2011

Hi All,

Well, I told myself I would update you guys as soon as I heard back about the PET scan, but I'm finding I need a few days to process information enough to write about it. Information: processed.

I talked to my NP last week and she said my doc reviewed the results and they were inconclusive. Basically, she said the results weren't clean, but they didn't exactly show sarcoidosis. She is going to talk to her colleague on the east coast that works with strange presentations of sarcoidosis to get his opinion. I'm bi-coastal baby!

I was really shaken up about the whole sarcoidosis thing, and just feeling like my heart stuff is on the decline. Since my heart is pretty shot, why can't I just get on the transplant list? Well, after crying and whining (I know, I'm a real treat), my NP finally said that I'm just not sick enough. I think I knew that in the back of my mind, but I go through this stage every few months - I have some setback, I get scared and frustrated and then beg for a transplant. I'm sure you guys are familiar with the cycle by now, but I somehow always think this time will be different.

So anyway, my NP reminded me of all the reasons it is crucial to keep your own heart as long as possible. We made a med plan and I'll see her again in 2 weeks. Hopefully by that time, my doc will have some answers about the PET scan.

With all this heart stuff, I've been feeling very out of control lately. That comes with the territory, but it was getting to be too much. So I've been trying to take some control where I can. I've been giving myself a mini-makeover (If you watch RHONY, like Ramona!).

I got my curly hair straightened, have gotten some new clothes, I'm wearing more make-up, I've been eating really clean, and getting good sleep. Hopefully I'll be allowed to go back to cardiac rehab in the next week or two, and that will be the icing on the cake. And I'm going to Vegas! I'm meeting my friend Jenny from New Mexico and her friends to bask by the pool, drink pina coladas, and play blackjack. Hit me!

Alright kids, it's a warm-ish sunny day in Seattle so I've got to go soak up every bit I can.

Much love,

A bowling ball with a mustache- 4/20/2011

Hi All,

I debated writing up a note today because I don't have all the information that I would want, but I guess you can find out the rest when I learn it!

I had the PET scan on Friday and Monday I met with my nurse practitioner (NP) just to check in and see how I was doing since I'd left the hospital. I'd started to perk up by then and was having a lot more energy than I had since I was in the hospital.

The PET scan results were in the computer so I asked my NP to go over them with me. She was hesitant dig into them because my doc needs to interpret them, but we did go over the highlights. Basically, it did show some inflammation in my heart, which is what they would expect to see with sarcoidosis. My NP didn't know if having inflammation could be a result of something else, but is usually does mean sarcoidosis.

They also found two infarcted areas in my heart. (Yes, I know this is serious, but every time she said "infarcted" I snorted. Come on. That word is hilarious. Like top ten funniest words, I'd say.) An infarcted area is a place in the heart that is not receiving or pumping any blood at all. Basically dead heart tissue. Hmm. My NP didn't know if I already had one and the second came along with the heart attack, or if the heart attack caused them both. That is a question for the doc. Another question is about the size of the spots.

We then talked about sarcoidosis in general. If I have it, I'd probably have to start taking steroids right away. The steroids attack the inflammation and hopefully can get it to go into remission. I may be able to taper off the steroids in a few months, or I could have to be on them for a lot longer than that. They have a lot of really lousy side effects like hair growth, weight gain and more. Hopefully, my doc will have some ideas on curbing those effects, because they are really throwing me for a loop. I guarantee you, I'm going to try my best not to turn into a bowling ball with a mustache.

From what I can tell, the good news is that if they treat the sarcoidosis, they can possibly prevent my heart from getting worse. And if my heart does end up wearing out, having sarcoidosis wouldn't prevent me from getting a heart transplant.

Oh, and if I have sarcoidosis, it would likely mean I didn't get all these heart problems from a virus like we thought. That is kind of throwing me off balance. I've kind of made peace with that bit of bad luck, but having a whole other disease is overwhelming and hard for me to get my head around. I'm really trying to not think too much about it until I meet with my doc this coming Tuesday and get some solid information.

Nick has (as always) been there to hold my hand, calm me down, and let me soak his shirt with my tears. I made a total rookie mistake and went to Dr. Google to get details on this condition and medications. If I ever lend you any advice, please let it be this: Those message boards and homemade websites about diseases are way better at causing hyperventilation and stress headaches than they are at giving any worthwhile information. Don't read them- especially when you are confused, scared, and ill-informed. FYI.

Ok, well that's all I've got for now. I'd appreciate any extra prayers or good vibes you've got laying around. I really just need to calm down and wait for real information on Tuesday. *Breathe Jana, breathe*

Lots of love,
ps, We got word that our neighbor is making improvements every day! She has a very long road ahead of her, but she's moving in the right direction!

Not the fun kind of PET- 4/15/2011

Hi All,

I'm sorry for not updating sooner! I've been pretty tired this week, and not quite feeling like writing yet.

I got home from the hospital on Monday evening. I was so sick of that place. I was there a week this time. I've stayed that long before, but for some reason this stint felt longer than the others. I'm not sure how, but this stay was more monotonous but also more nerve wracking than previous stays. It didn't help matters that my veins were not in the mood to give up blood, so every poke was painful and drawn out. I think they took blood 30 times while I was there. Good grief.

After all that time, the docs were no closer to figuring out the physiological reason for my heart attack. Obviously, it was triggered by the situation with our neighbor, but we need to determine why my body's response was to have a heart attack.

They did two angiograms and came to the conclusion that I still don't have any blockages at all. Good news, except that would have explained this and would have been treatable with a stent. So we're back at step one.

So my doc ordered a PET scan that I got today. In case you are like everyone else and don't know what a PET scan is- it's like a cat scan where you lay down in a huge machine that looks like a giant roll of paper towels. (Hmm, not sure if that is the right analogy. Anyway.) They then take tons of images of your heart (or whatever body part they are looking at). They literally took images for 6 intervals of 15-30 minutes each. So it was a lot of laying down. No real bother except when I decided I had to pee...1 minute into a 30 minute interval. It is really hard to think of anything besides peeing at that point, trust me.

The point of the scan is to look for sarcoidosis (mentioned a few posts ago) as well as look at my teeny weeny veins to look for blockages there. They also did another test to see how much of my heart muscle tissue is damaged. I guess that's just a FYI-I'm not sure what they would do with that info. Maybe it's for a bet between the doctors. (I like to imagine that the doctors have lots of wagers and races behind the scenes- just to keep things interesting).

Oh, and a lot of you have asked how our neighbor Pegi is doing. We haven't been able to find out any updates since last week, which is super frusterating. Last anyone heard, she had massive brain trauma and things didn't look good at all. Also, we haven't heard if the police are any closer to making an arrest. I just can't believe someone could get away with something so heinous. But I'm sure the police are doing everything they can. Anyway, please keep Pegi and her family in your thoughts and prayers. They need it.

I hope to get the results of the PET scan on Monday- I'll try to be better about updating you sooner with the deets. Sometimes the tests run together and I forget what I've talked about and what I haven't. Maybe I need a chart or an action plan to keep me on task...whoa,no, that's way too dorky.

That's all I've got for today...have a great weekend!!
Lots of love,

Borat is my doctor- 4/10/2011

Hi All,

Well, this marks day 5 in the hospital. Since Tuesday, the docs have been trying to piece together why I had this event (that's what they call these heart situations- but don't confuse this event with other events such as a high school reunion or bar mitzvah. Rookie mistake).

In order to solve this mystery, I've given them tons of blood, had x-rays and the other day the docs decided that they wanted to do an angiogram (snaking a wire in my heart to shoot dye into my arteries to look for any blockage). It would be super rare if I had any blockage, but they just wanted to check.

So Friday, they did this newfangled angiogram where they went through my wrist instead of my groin (fabulous advancement in medical technology, I'd say) and everything was clean as a whistle. But to my dismay, I found that they could only snake the wire into one side of my heart. My anatomy didn't allow them to go to the other side. So tomorrow I have to go in for the old school angiogram. Bah. Lousy excuse for medical technology advancement, I'd say.

Another reason I've been here so long is my blood pressure is just too low and my blood is too thin to do the other angiogram. So I've been getting fluids and blood thickeners for a few days, trying to get me ready for the test. I mentioned adding a roux to my IV to thicken up the blood. It always works on soup! They didn't care.

I do have a new doc on my team this time. I'm used to most of the docs here, but new fellows and residents do cycle through the cardiac floor. And this time, the new doc is...Borat. That is the only way I can describe him. He has an indiscriminate eastern European accent, wild curly hair and a moustache, and thinks he's hilarious. Today, I asked when I would have that test tomorrow and he says (with a twinkle in his eye) "Sometime between 7am and 5pm. Hahahahaha!!". After Jerry Seinfeld composed himself, he said "No, just kidding. I have no idea". Oh well, if my doctor can't be well informed, I at least want him to know how to tell a good joke. : )

Oh, as for when I am expected to be able to blow this joint- It's looking like Tuesday.

Alright, I'm going to catch a Sunday nap. Adios!
Love to you all,

A tragedy- 4/6/2011

Hi All,

Wow, it's been an insane few days. First, I have some terrible news. Yesterday afternoon, our next door neighbor was brutally attacked in her home and is not expected to survive. It looks like it was a domestic violence situation, and not a random attack. They haven't caught the person who did it yet, but we are hoping they will soon.

So this awful event lead to my crazy situation. I got home yesterday about 4:15pm and as I was driving up, I saw flashing lights right by our house. I thought "Ha! They caught that rotten burglar that's been hanging around". But as I got closer I saw there were about 15 police cars by my house and our street was roped off with police tape. And I start to freak out. A cop told me to find a place to park and come talk to him.

I had to park about a block and a half away (including going halfway up our wildly steep hill). I made it halfway up the hill, going really slow so my heart would be ok. It was beating a little fast, but nothing unusual. The detective came over to talk to me, and as I explained how I knew Pegi and what I knew about her, my heart started to hurt a bit. The more details I found out from the police, the worse my heart felt. They told me her head and body were beaten, and she crawled outside her house to scream for help, and rolled down our very steep hill, probably causing more damage. Strangely, she was in her underwear, and her gas stove was on full blast, but there was no flame. After hearing all this, I sat down to let my heart chill out a bit, but the pain didn't get better.

An officer called an ambulance for me and it arrived not a moment too soon. The worst chest pain I've ever had I would rank as a 3 on a scale on 1-10. Yesterday's pain was a 9. It was excruciating. I felt a terrible pressure in the middle of my chest, my left shoulder blade felt like it was stabbing my chest, and my neck and jaw were killing me. The medic's were super kind and calming, but my anxiety level was through the roof.

I got 4 doses of morphine and 2 nitroglycerin before it started to take the edge off at all, at about 11pm. I was surprised the pain kept going on for that long. The whole time I was sure it was a panic attack and not a heart attack.

So the ER docs did a lot of tests, and found that my heart started to release enzymes that are produced when heart muscle dies (that's what happens in a heart attack). So I did, in fact, have a heart attack. I can't really get my head around that. It seems pretty unreal. It was a small attack, but they are all serious, no matter how big or small.

The docs don't think the attack was caused by any artery blockage, because I've never had any on the tests they've done. It was more likely triggered by the stress of the situation. That makes complete sense to me. Even today, if I think too much about what happened to her, my heart starts hurting and I can't breathe all that well.

So I've been here at UWMC for observation and I should be able to go home tomorrow. I will have several big tests next week, as the docs try to figure out why my heart responded to this situation with a heart attack. They did do an ultrasound of my heart, and my ejection fraction is 35, exactly what is was back in November. So it's great that that number didn't take a huge dive with this.

I do want to figure out what this means for the future, if anything. Does this mean I'm at risk for more heart attacks? Would they be bigger/more dangerous? Does this put me closer to, further from or make no difference regarding a transplant? All questions I hope to be able to answer soon.

As always, thank you all for your kind words, love and prayers. You all are too good to me- that's the truth.
I love you all!

Stage Makeup and a Power Suit- 4/2/2011

Hi All, So last time I wrote a note, I was in the hospital, getting started on the Sotalol. Good news on that front- the muscle jerks I was having have almost completely stopped! And I've also been able to stop worrying about the 38 other serious side effects that the Amiodarone causes. That's a big relief.

I have come across a snag, and we're not sure if it's from the Sotalol, or just my electrical problems acting up. I've been having these "episodes" where my heart does some weird beat, then my heart rate goes up to about 100, the wind is knocked out of me, I feel a strong squeezing my throat, and I get super lightheaded and feel like I may black out, but I never do.

To figure out what's going on, my doc gave me a King of Hearts. That's the heart monitor that looks like a pager that I had about a year ago. Perhaps you'll remember it because when I press the record button it makes a "hoooonnnnnkkkkk" sound for about 30 seconds. Why yes, as a matter of fact, it is embarrassing. Oh well, it works.

I met with my electrophysiologist yesterday to review the results. And she was completely confused. It seemed like every reading conflicted with another. She consulted with my cardiologist, and she couldn't make heads or tails of it either. They definitely saw odd rhythms, but luckily, none of them are life threatening (love to hear that!). The gist is that my heart's electrical system seems to be acting more erratically though. She mentioned "progressing electrical disease". I didn't ask more about that. I'm not really ready to process something like that yet.

She also ordered a PET scan to check for sarcoidosis. Evidentally, sarcoidosis is a very rare disease that can cause dilated cardiomyopathy (what I have, that the docs have always thought was caused by the flu). Diagnosis can take a long time because doctors rule out about everything under the sun before they go down this route (I guess because it's rare and it's hard to find). Sarcoid (that's what all the cool kids call it) is an inflamation in your body that can cause all sorts of problems, however cardiac sarciod is one of the rarer manifestations. They don't know the cause, but it does usually show up in people 20-40 years old. Anyway, I'll let you know what the test says when I get it (I'm not sure when that will be yet).

Oh, I don't know if I've told you- I've been volunteering for Lifecenter Northwest for awhile now. They are our local organ donation organization and I love them. : ) This Monday, I'm going to a taping at our local news station (New Day Northwest on King 5 for you Seattle peeps) for a segment on a mother whose son was killed protecting a stranger as she was being beaten in the street. She's sharing her story to raise awareness for organ donation. So I'm going to be in the audience with some other volunteers to show support for this brave woman. I'm excited to do that, although I've got to figure out a TV appropriate outfit. If you see a curly haired girl in the audience, wearing stage makeup and a power suit, it's probably me.

Ok, that's all for now I guess!
Much Love, Jana

Hospital-ing it up-3/9/2011

Hi All!

Well, this has been uneventful...yay! I got to the hospital Monday afternoon and they put on my first dose of Sotolol. An hour after each dose, I get an EKG to see if the QRS waves on my EKG widen. If they do, I'll need to come off the drug because that can cause arrhythmias (oddly so, because the drug is an anti-arhythmic. Hmmm.)

So far, so good though! All is normal, which are here is excellent news. The docs did notice Sparky doing some odd pacing things, which they determined that Sparky's 3rd lead that wasn't supposed to pace me was pacing every once in a while, and giving me that sick, dizzy, just punched feeling. It wasn't doing anything for me therapeutically, so my doc turned that lead off. Hopefully, that will settle that problem-o once and for all.

I've been getting a mountain of stuff done while I'm here- reading I needed to catch up on, bills, insurance and disability paperwork. It's like I've been on a paperwork/to-do list spa get-a-way! (Minus the spa stuff. Though they have changed the soap to a nice cucumber melon scented body wash, so that's pretty swanky.)

I've also relearned the beauty of Ambien. I try not to take it at home, because I get used to it, and it stops working. But I always take in the hospital because with the beeping, talking, and old people hollering, a good night's sleep is always 10 milligrams away.

Since I hadn't used Ambien in awhile, it really effected me. I konked out, and woke up the next morning feeling like a champ. Ah, perfect. Only later did I find out that I had gotten an EKG at 2am and though the nurse said I was talking and seemed totally alert, I have no recollection of said EKG occurring. So the question is: Is this a new technique to pad the bill?"Oh Mrs Morrelli, of COURSE you got an EKG at 2am. You just don't remember!". Or is paranoia a side effect of the Ambien? Who's to say?

I did run into one of my favorite docs who is not my doc. She is a resident, and works on the cardiology team, and right now I'm a ward of the electrophyisology team. We were talking in the halls, and I was telling her how I'm just trying to figure out what I can expect from life from here on out. I seem pretty stable these days, better energy than before, but still get completely wrecked if I do too much. The meds have pretty much done what they are going to do, so it's not unreasonable to think I'll be like this for the long term. The good news is she said frequently if people are this stable, they don't usually have a big fall of the cliff and get tons worse. So it was nice to have that fear allayed. So the next step for me is to really figure out how I want to live my life- and I mean live it. Not just waiting with the hope that I'm going to pop up one day all better, but doing what I can to increase the quality of my life, and to enjoy life. That doesn't need to be put on hold. I don't have time to put that on hold. So stay tuned, I expect to see some changes coming around the bend!

In other news- I've found the best thing on the Heart Healthy Menu here! (that is quite a feat). 1st- The Montlake Cut sandwich- wheat bread, roasted turkey, provolone, roasted red peppers, avocado, light mayo. Delish!! 2nd- They have recently added black beans to the menu (I know, because I could recite that menu to you all right now, but I'll leave it as a surprise in case you're ever here). So I mashed up my black beans, and ate them with Baked Lay's, like bean dip! Talk about a MacGuyver move right? Totally impressed with myself.

Well, I'm off to MacGuyver some breakfast up now...Scrambled eggs, peanut butter and ketchup? Hmm, my winning streak may be over.

I love you all!

I'm approved! 2/25/2011

Hi All,

It's a good Friday! I just got notification that I was approved for Social Security Disability. This is awesome because it means that will be eligible to apply for Medicare in about a year. That is fantastic, because if I need a transplant in the future, Medicare will help with the bills immensely. Fantastic.

My monthly disability payments won't increase, because my private disability insurance will decrease by the amount of SSD I get, but it is more secure than the private insurance, and now that I am approved, there are way fewer hoops to jump through.

I was approved in about 5 months, and didn't have to appeal. That is pretty rare, as most of the time Social Security denies the petition at first, and several appeals become necessary. I guess I am lucky (?) enough to have a condition that is completely documented and my labs are all well within the approval standards.

I was jumping for joy when I got the letter this morning. Ok, I didn't jump but I did do a mean Jersey Shore fist pump. Crossing this off the stress list is such a relief. Nick was a little less excited. To him, it's just another reminder of how sick I am. I told him that nothing has changed. I'm the exact same as I have been, we just have more financial security now. It's definitely a good thing, but I understand it's just another dose of reality. Blech.

On the health front, I'm doing pretty good. I stopped the Amiodarone about 6 days ago, and I am pretty sure the jerking is becoming less frequent. One bummer is that I have felt some strange heartbeats and racing the last few days. It kind of feels like I got the wind knocked out of me and breathing is hard for a few minutes. I'm not sure if it could be a result of stopping the Amiodarone. That drugs stays in your system for at least a month, but it still could have something to do with it. I called my doc and she'll let me know if I need to stop by to have Sparky interrogated. I'm sure it's nothing, but I always like to make sure.

I can't remember if I told you I was going into the hospital to start Sotalol on Monday, March 7th. They were going to have me come in on Friday, the 4th, but I have fun plans that weekend and I have no desire to miss them for a stay in the 4 star resort that is UWMC. So Monday it is!

Well, I'm off to go stare dreamily at my social security approval letter. It's gorgeous. : )


It's a date! 2/22/2011

Hi All,

Alright, I've got the switch to Sotolol scheduled! I will go to the hospital on Monday, March 7th, and stay for 3 days while the drug is started. The docs will watch my EKG to make sure my QT waves don't widen (don't ask me what that means exactly, but that's what we're watching out for).

I'm so grateful there is another medication out there for me. There is so much about this condition that I have absolutely no control over, so it feels awesome when I have a concern about a problem and can do something about it.

The good news is I will be in the hospital but I won't feel lousy, so I should have plenty of time to scope out the hospital drama. You'd think the cardiac floor would be a real snooze-fest, but it's surprisingly interesting. Stay tuned!

Love to you all,

And she's off! (well, about to be off) 2/11/2010

Hi All,

Got some good news...I get to get off Amiodarone!! That's the drug with all the awful side effects like the jerking and the cataracts (and 38 additional serious side effects that I haven't seen yet, but am constantly worried about).

I just talked to my nurse practioner, and she let me know my cardiologist and my electrophysiologist had a pow wow, and they agreed I can come off the drug. The next step is figuring out the best way and time to get me on the replacement drug (Sotolol). I can't just stop the Amiodarone; I have to switch right away to Sotolol. And that is a little tricky.

Sotolol can sometimes cause dangerous heart rhythms, but the good news is the rhythms show up right away if they are going to make an appearance. So I will probably have to be admitted into the hospital for a few days to start Sotolol, just so the docs can watch every heartbeat and make sure the bad rhythms aren't occurring.

I go see the doc on Tuesday, and hopefully we'll have a game plan then. So, if all goes according to plan, I may be off Amiodarone within the next week or two. Hot dog!

Well, that's all the news I have for now- I'll keep you posted on the next steps. I can't wait!
: )

Effects on the side, please- 2/3/2010

Hi All,

It's been so long! I've been lucky enough to have a really good run of it for awhile, and I haven't had much to tell you. Sparky 2.0's pacemaker continues to be the best thing that has happened to me in the last year and half. My heart is beating strong and regularly, my blood pressure is back where it should be, and my energy is much better than it was for the month or so I was dealing with the terribly low heart rate.

So in general, things have been really good. The only snag I've run across is I'm starting to see some lousy side effects from my drugs, and they may have become kind of serious. I think I told you guys a long time ago about this drug called Amiodarone. It's the drug that stops the dangerous rhythms that caused Sparky 1.0 to shock me. Well, the drug is working perfectly for that purpose. I haven't had one bad run of heart rhythms since starting it. But I'd been warned about the nasty side effects of the drug from the beginning. Lung deterioration, kidney problems, vision problems, neurological problems...the severe side effects lists for most drugs includes 3-4 conditions. This drug's list includes something like 40.

Well, a few months ago I started noticing I was having muscle jerks sometimes. About 5-10 times a day, my whole body would jerk, like a reflex. The jerk originates from lots of places- my calf, my arm, my neck, my stomach. It doesn't hurt, it's just surprising.

I mentioned it to my doctors, and they referred me to a neurologist this month. After his exam, the neurologist said he thinks the jerks are likely from the Amiodarone. To be sure it's not something else, he sent me for an EEG, which is where my head gets hooked up to about 20 electrodes and I lay in bed with my eyes closed for an hour. The results haven't come back yet, but the most likely answer is still the drug.

The other odd thing was what my optometrist told me at my eye exam a few months ago. He said I was developing the beginning stages of glaucoma and have some cataracts. He said this wasn't 100% attributable to the drug, but that it was likely. He scheduled a follow up test for later this spring, so we can see if the disease is progressing.

My nurse practitioner and I discussed all of these things this week at my appointment, and she said the vision problems can get serious, and that may very well mean I have to come off Amiodarone. There is another drug called Sotolol that can be used instead of Amiodarone. It's not quite as good at suppressing the bad rhythms, but it has far fewer side effects.

If I go on Sotolol, I'll have to go to the hospital for a few days while I start the drug, because I need to be observed for adverse reactions. But I really think it's worth it. The Amiodarone is a great drug, but I'm way too scared of the side effects.

That's the thing that's hitting me with this situation. Until now, I've been able to push the thought of side effects out of my mind, and just focus on the task at hand. But I'm starting to feel like it's time we pay close attention to the long term effects, because I want to be around for years and years, and I'm going to need my vision and kidneys and lungs. I know my doctors have the best interest at heart, and are going to watch out for all of those risks. So if they say we need to try Sotolol, let's do it.

I'll keep you posted on what happens. My guess is we will know which direction this will take in a a few weeks. But yay for solutions to lousy problems!

Love to you all,