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
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!
Love,
Jana
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!
Love,
Jana
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,
Jana
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,
Jana
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, laughing...you 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!
Love,
Jana
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, laughing...you 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!
Love,
Jana
"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!
Love,
Jana
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!
Love,
Jana
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,
Jana
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,
Jana
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!
Jana
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!
Jana
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