Hi!
Ahhh...vacation. Is there anything better? Additional vacaction? Ok, that would be better I guess.
I got back from Las Vegas last night at midnight- whew. I had a total blast and loved every minute I spent with Sara and Jenny. : )
I got in on Friday night and met the girls at the hotel. We stayed at Jenny's timeshare and it was fabulous! It had 3 (count em, 3!) bedrooms, so we each got our own room. Holla! And there was a private veranda that is bigger than our living room, dining room, and kitchen combined. Awesome I tell you.
We spent the whole weekend lounging at the pool, enjoying exotic beverages, eating yummy food and laughing. Tons of laughing. : ) We gambled a bit and saw a few shows- good times!
Here's some unbelievable news- I didn't get sunburned! SPF 70 in a spray can rules. I've heard rumor that you can get SPF 100 now. Oh, it's too much to hope for! I did have to put zinc oxide on my Sparky scar to prevent it from burning. The doc that said that a burn there would hurt like all get out. Ok, she said it would hurt, but I can only assume the amount would be "like all get out".
I did take all the precautions I could to prevent me getting heart-sick. I got wheelchair service at the airport, cause that's how I roll. ;) (Thanks for the joke Jillian). It was honestly a lifesaver. I guarantee I couldn't have walked to the gate without passing out. The real bonus is that I got to bypass all those healthy hearted suckers in the security line! Ha, that wiped the sympathetic look right off their faces. : ) Kindness for the ailing goes right out the window when the ailing get to cut in line. Heh heh.
Jenny and Sara also suggested we get a wheelchair from the hotel and use that around Vegas. That was really taking one for the team...do you know how hard it is to find wheelchair ramps in a casino? Hard!
Wheeling around Vegas was great, but not without it's snags. The first day, we got a bum wheelchair. The girls thought it was hard to push, but we kept going. Until we were crossing a cobblestone street in front of the Venetian, and we hit a bad cobble. And the little front wheel of the chair fell off!!! In the crosswalk! And the chair tipped forward and I almost fell out! (Nice driving Jenny. ; ) Anyway, a nice guy stopped and helped us put the wheel back on. Ah, the kindess of strangers!
We had a fantastic time, but I definately did feel the effects of the bum heart. I'm not sure if it was from doing so much (although we did kept a very relaxed schedule) or what, but my hands were super shaky, and I was nauseated a lot. And there were a few times when I had to prop up my head becauase I couldn't hold it up while we were wheeling around. I made a Drs appointment for this Friday just to check in and make sure all is ok.
It was a wonderful trip, and exactly what I needed. It took a lot of extra planning, but knowing I can go places again is so liberating!! And next time, Nick will get to enjoy the short security line with me! : ) Yahoo!
Love,
Jana
4/19/2010- Good news and confusing news
Hi All!
Man, it's been awhile! The good news- I've been feeling really good lately. : ) I'd say I've had about a 3-4 week good run, where I haven't had a bunch of PVC's and I've had good energy. Yahoo! I'm not really sure what the difference is here, but I'm happy for it. Don't look a gift several week run of good heart feelings in the mouth, I always say. : )
So that's the good news...now for the confusing news.
2 weeks ago I had a pulmonary stress test done. This test was a real bear. They hooked me up to a 12 lead EKG (which oddly enough only had 10 leads. I asked for a discount; they said no). I also had stickers on my forehead, a headband with sensors on it, a blood pressure cuff, and I had to wear a mask over my mouth and nose (like in Silence on the Lambs, but with a hose at the mouth). It was quite the get-up. Then I had to ride on a stationary bike.
They started off at no resistance, easy peasy. Then they upped the game. It got really tough, but gradually. I did the bike for 17 minutes! I was all proud of myself because the doctor kept saying "Good! Good! Excellent job!". I was pretty sure I rocked the test and blew them all away with my skill and excercising prowess (being that I've gone to cardiac rehab for WEEKS now). The one scary part was at the very end, my heart rate got up to 184. Sparky starts charging at 188. I had no intention of being defibrillated on a bike, so it's good that that's when the test ended.
So today at my doctor's appointment, I got the results of the test. And they weren't great. My nurse practitioner (NP) talked me through the results, but it was pretty confusing. The gist is that if I had a healthy heart, they would expect me to score a 31 on this test (sorry, I don't know what that scale goes up to...I don't think it's 100 though). I got a 16. 14 is the cutoff for "Severely limited". If I got a 14 or less, the docs would start looking pretty seriously at transplant again. Ack.
My NP was taking the positive approach- "Well, it's 16, not 14, so that's good!". Yeah, but 16 seems pretty darn close to 14. She said this number paired with my ejection fraction of 20% means that even though I'm feeling good and looking good (not bragging here, I just mean I have good color and am perky), these tests continue to tell the story that my heart is quite damaged and we need to keep a very close eye on it.
I decided that I wanted to talk to my cardiologist about this test and my condition as a whole. A State of the Union if you will. So my NP is trying to get me an appointment with the cardiologist within the next month or so.
In better news, I'm going to Las Vegas this weekend for a girl's trip! We are celebrating my wonderful friend Jenny's birthday. Jenny and her sister Sara are my best friends from Red River, NM, where we lived when I was in high school, so it will be awesome to catch up. This is my first trip involving a plane, so that should be interesting. I am going to play this heart thing up big time and am getting wheelchair service at the airport. Brilliant! Anyway, I'll tell you all how the trip goes, but I'm sure it will be fabu!
Ok, that's all for now...
I hope you are all doing well...I love you!
Jana
Man, it's been awhile! The good news- I've been feeling really good lately. : ) I'd say I've had about a 3-4 week good run, where I haven't had a bunch of PVC's and I've had good energy. Yahoo! I'm not really sure what the difference is here, but I'm happy for it. Don't look a gift several week run of good heart feelings in the mouth, I always say. : )
So that's the good news...now for the confusing news.
2 weeks ago I had a pulmonary stress test done. This test was a real bear. They hooked me up to a 12 lead EKG (which oddly enough only had 10 leads. I asked for a discount; they said no). I also had stickers on my forehead, a headband with sensors on it, a blood pressure cuff, and I had to wear a mask over my mouth and nose (like in Silence on the Lambs, but with a hose at the mouth). It was quite the get-up. Then I had to ride on a stationary bike.
They started off at no resistance, easy peasy. Then they upped the game. It got really tough, but gradually. I did the bike for 17 minutes! I was all proud of myself because the doctor kept saying "Good! Good! Excellent job!". I was pretty sure I rocked the test and blew them all away with my skill and excercising prowess (being that I've gone to cardiac rehab for WEEKS now). The one scary part was at the very end, my heart rate got up to 184. Sparky starts charging at 188. I had no intention of being defibrillated on a bike, so it's good that that's when the test ended.
So today at my doctor's appointment, I got the results of the test. And they weren't great. My nurse practitioner (NP) talked me through the results, but it was pretty confusing. The gist is that if I had a healthy heart, they would expect me to score a 31 on this test (sorry, I don't know what that scale goes up to...I don't think it's 100 though). I got a 16. 14 is the cutoff for "Severely limited". If I got a 14 or less, the docs would start looking pretty seriously at transplant again. Ack.
My NP was taking the positive approach- "Well, it's 16, not 14, so that's good!". Yeah, but 16 seems pretty darn close to 14. She said this number paired with my ejection fraction of 20% means that even though I'm feeling good and looking good (not bragging here, I just mean I have good color and am perky), these tests continue to tell the story that my heart is quite damaged and we need to keep a very close eye on it.
I decided that I wanted to talk to my cardiologist about this test and my condition as a whole. A State of the Union if you will. So my NP is trying to get me an appointment with the cardiologist within the next month or so.
In better news, I'm going to Las Vegas this weekend for a girl's trip! We are celebrating my wonderful friend Jenny's birthday. Jenny and her sister Sara are my best friends from Red River, NM, where we lived when I was in high school, so it will be awesome to catch up. This is my first trip involving a plane, so that should be interesting. I am going to play this heart thing up big time and am getting wheelchair service at the airport. Brilliant! Anyway, I'll tell you all how the trip goes, but I'm sure it will be fabu!
Ok, that's all for now...
I hope you are all doing well...I love you!
Jana
4/1/2010- A good day's work
Hi All!
Since I haven't updated in a while, I thought I'd write up a little note.
As I said before, no news is good news, and it is!! I haven't had too much groundbreaking news to share lately, so I've just kept busy with normal, everyday stuff. Like errands. I'm a fan of errands. There is nothing better to me than having a list of things to do (pick up dry cleaning, drop off library books, go to the post office, etc), doing those things, and coming home after a productive day. I feel so dang accomplished. Like I'm a pioneer and have plowed the field, shot a bear, made a peace treaty with a native American tribe leader, and am finally home to put my feet up and watch Grey's Anatomy. A good day's work, wouldn't you say?
So I did have a doctors appointment this Tuesday. It was my first appointment in two weeks (the longest I've gone since OCTOBER. Yeah baby!) and all was mostly well. My labs looked good, heart sounded good, doc was happy. : ) My blood was waaayyy too thin, so we are trying to fix that so I quit bruising like a peach. So we'll have to postpone the fight club extravaganza we had planned for this weekend. Blast.
I do have some kind of pulmonary test next week which will tell us how much my heart is effecting my activity. I'm not too sure why I need this- shouldn't I be able to tell that by how far I can walk without grabbing the wall? Oh well, I'm not a cardiologist, I just play one on TV. The one good thing is it will probably show my heart is pretty weeny and that will be helpful in proving to my disability insurance company that I really am sick. They keep thinking I'm faking it I think. Then they get a copy of some lab that shows my heart looks like a 70 year old's and they shut up for a few weeks. Bah, insurance! ; )
Let's see what else is going on....Ah, did I tell you I've been going to counseling? I'm not sure that's the kind of thing you're supposed to put on a blog, but whatev. I've told you guys most everything else. Plus, I'm not ashamed of it- I'll shout it loud and proud! I was just feeling really overwhelmed and I do mostly keep a stiff upper lip and sometimes you just need to be able to whine to someone you are paying. :) They have no vested interest as long as the insurance claims go through! It's been good and I have been feeling tougher emotionally lately which is awesome. I was crying at the drop of a hat there for awhile. But getting better now!
In other news- Nick's cousin Derek is in town visiting and we are having a great time with him. The guys have seen every tourist trap this town has to offer, and then some! : ) They have also done a lot of cool stuff too (like going to Vancouver, BC today. Lucky!). I've gone along to some of it (like San Juan Island last week) but not everything because I still do get tired pretty easy. But it's been a ton of fun having Derek here. Love it!
Well, I hope you all have a wonderful Easter and I love you all!!
Talk to you soon!!
Love,
Jana
Since I haven't updated in a while, I thought I'd write up a little note.
As I said before, no news is good news, and it is!! I haven't had too much groundbreaking news to share lately, so I've just kept busy with normal, everyday stuff. Like errands. I'm a fan of errands. There is nothing better to me than having a list of things to do (pick up dry cleaning, drop off library books, go to the post office, etc), doing those things, and coming home after a productive day. I feel so dang accomplished. Like I'm a pioneer and have plowed the field, shot a bear, made a peace treaty with a native American tribe leader, and am finally home to put my feet up and watch Grey's Anatomy. A good day's work, wouldn't you say?
So I did have a doctors appointment this Tuesday. It was my first appointment in two weeks (the longest I've gone since OCTOBER. Yeah baby!) and all was mostly well. My labs looked good, heart sounded good, doc was happy. : ) My blood was waaayyy too thin, so we are trying to fix that so I quit bruising like a peach. So we'll have to postpone the fight club extravaganza we had planned for this weekend. Blast.
I do have some kind of pulmonary test next week which will tell us how much my heart is effecting my activity. I'm not too sure why I need this- shouldn't I be able to tell that by how far I can walk without grabbing the wall? Oh well, I'm not a cardiologist, I just play one on TV. The one good thing is it will probably show my heart is pretty weeny and that will be helpful in proving to my disability insurance company that I really am sick. They keep thinking I'm faking it I think. Then they get a copy of some lab that shows my heart looks like a 70 year old's and they shut up for a few weeks. Bah, insurance! ; )
Let's see what else is going on....Ah, did I tell you I've been going to counseling? I'm not sure that's the kind of thing you're supposed to put on a blog, but whatev. I've told you guys most everything else. Plus, I'm not ashamed of it- I'll shout it loud and proud! I was just feeling really overwhelmed and I do mostly keep a stiff upper lip and sometimes you just need to be able to whine to someone you are paying. :) They have no vested interest as long as the insurance claims go through! It's been good and I have been feeling tougher emotionally lately which is awesome. I was crying at the drop of a hat there for awhile. But getting better now!
In other news- Nick's cousin Derek is in town visiting and we are having a great time with him. The guys have seen every tourist trap this town has to offer, and then some! : ) They have also done a lot of cool stuff too (like going to Vancouver, BC today. Lucky!). I've gone along to some of it (like San Juan Island last week) but not everything because I still do get tired pretty easy. But it's been a ton of fun having Derek here. Love it!
Well, I hope you all have a wonderful Easter and I love you all!!
Talk to you soon!!
Love,
Jana
3/16/2010- Smiling again!
Hi All!
Well, the last few weeks have been a bit of a bummer, but I'm happy to report that I'm doing good! I haven't had an "episode" in over a week now and yesterday I had a good doctors appointment! Holla!
Yesterday the labs were good, I didn't have fluid around my heart or lungs, and I wasn't having PVCs! The doc was so happy with that she increased the all important beta blocker, which makes me feel even better. Ha, take that heart failure!
Obviously, I'm in a much better mood too. : )
The doc says that while I'm on the upswing here, we'll keep increasing the meds and hopefully, that will give me a little more energy. The beta blocker is the one that makes my heart pump more efficiently, and every bit of efficiency means I have more energy to do things, rather than using all my energy just to have heartbeats. And I have to say, "doing things" is one of my favorite activities!
In other news, who is watching American Idol? I am so on the Crystal Bowersox train, but am also on the Sioban (Siobougn? Siobogn? Chavonne?) Magnus train. I told Nick last night that I know I love them both because I could listen to either one for a full hour and half concert. I can barely do that with ANY singer at all, so that's a big compliment! It also may be a small sign of ADD. Hmm.
Well, I hope I have no reason to update you all for awhile! Remember, no news is good news!
Love you!
Jana
Well, the last few weeks have been a bit of a bummer, but I'm happy to report that I'm doing good! I haven't had an "episode" in over a week now and yesterday I had a good doctors appointment! Holla!
Yesterday the labs were good, I didn't have fluid around my heart or lungs, and I wasn't having PVCs! The doc was so happy with that she increased the all important beta blocker, which makes me feel even better. Ha, take that heart failure!
Obviously, I'm in a much better mood too. : )
The doc says that while I'm on the upswing here, we'll keep increasing the meds and hopefully, that will give me a little more energy. The beta blocker is the one that makes my heart pump more efficiently, and every bit of efficiency means I have more energy to do things, rather than using all my energy just to have heartbeats. And I have to say, "doing things" is one of my favorite activities!
In other news, who is watching American Idol? I am so on the Crystal Bowersox train, but am also on the Sioban (Siobougn? Siobogn? Chavonne?) Magnus train. I told Nick last night that I know I love them both because I could listen to either one for a full hour and half concert. I can barely do that with ANY singer at all, so that's a big compliment! It also may be a small sign of ADD. Hmm.
Well, I hope I have no reason to update you all for awhile! Remember, no news is good news!
Love you!
Jana
3/13/2010- Trying to gain some perspective
Hi All,
Well, I went to the doc yesterday and yet again, I left feeling like it was an excercise in futility.
As you may remember, the PVCs I've been having have really been messing with me. They are the reason I went to the ER last weekend and I've had more this week. A few weeks ago, I was able to get an appointment with an electrophysiologist today and was so excited to speak to her. She was actually the doc that put in Sparky so that's cool too.
We talked and the bottom line was that she was puzzled, just like everyone else. Although she thought that all my trouble wasn't just being caused by PVCs but maybe also be caused by my heartrate speeding up frequently. That could also cause me to feel my heart pounding and to make me so tired.
The one thing she did say over and over was that I seem to be incredibly sensitive to anything going on in my heart, way more than most heart patients. Which, as she said, is unfortunate. This was proven once again when the nurse tweaked Sparky with a little tiny electrical shock that I was not supposed to feel. I didn't know what she was going to do, but as soon as she shocked me, I gasped from the weird feeling and then saw hundreds of little pinpoints of light in my vision, like a huge swarm of fireflies. While that's cool and all, it's pretty surprising while talking to your doctor.
So after we discussed for a while, she gave me two options:
1) Do a catheter test to see if she can see any particular section in my heart that is causing the increased heartbeat and the PVCs. She'd do this the cath lab and they would inject me with adrenaline to try to get my heart to act up. She could then possibly burn that little section of my heart to get rid of the tissue that is causing the problem. The bad side is that since I feel everything in my heart, this would probably be really uncomfortable and can be dangerous since my heart function is so weak anyway.
2) Start taking a drug called sotolol which is like one of the drugs I'm taking now, except it has anti-arrhythmia properties to it, so it could very well help with the fast heartbeats and the PVCs. The bad part is that it doesn't have the life lengthening properties that the drug I am on now has. Also, I would need to stay in the hospital for a few days after first taking it to make sure I did ok on it.
My thought was "HOORAY! Here are some options that can get me out of this mess!". Yeah, I know that neither option sounded that great, but at least I wasn't being told that I would just have to live with this.
My vote was the sotolol because it would be less invasive than burning off a piece of my heart. Plus, my hope was that I could take it for awhile and then maybe get back on the old drug later, so I could keep getting the long term benefits of the old drug.
Well, the doc was about to admit me to start the sotolol and get this show on the road, when she decided to call my cardiologist, just to get her blessing. Suffice it to say, the blessing was not given. My cardiologist freaked out and said that sotolol was way too risky and that she was not taking me off the other drug.
So by the end of the visit, my cardiologist said I could take a little more of my current drug which may help the PVCs a bit. Yipee. I was not impressed.
I held it together until I got to the parking lot and then cried and cried and cried. I just felt like I was so close to having a solution and then it got taken away. Logically, I know my doctor is right, long term effects are what we have to focus on. But man, it's hard to worry about feel crummy all the time.
After a while I composed myself and then my friend Lauren and I went to dinner and a movie. It was a fun girls night and just what I needed. Thank you Lauren!
Anyway, today is a new day and I have a fresh perspective. My hope is the drug I'm on will start easing up the PVCs and things will start to get better. Better attitude=feeling better! : )
And on that note, I'm going to take a little nap!
Love you all!
Jana
Well, I went to the doc yesterday and yet again, I left feeling like it was an excercise in futility.
As you may remember, the PVCs I've been having have really been messing with me. They are the reason I went to the ER last weekend and I've had more this week. A few weeks ago, I was able to get an appointment with an electrophysiologist today and was so excited to speak to her. She was actually the doc that put in Sparky so that's cool too.
We talked and the bottom line was that she was puzzled, just like everyone else. Although she thought that all my trouble wasn't just being caused by PVCs but maybe also be caused by my heartrate speeding up frequently. That could also cause me to feel my heart pounding and to make me so tired.
The one thing she did say over and over was that I seem to be incredibly sensitive to anything going on in my heart, way more than most heart patients. Which, as she said, is unfortunate. This was proven once again when the nurse tweaked Sparky with a little tiny electrical shock that I was not supposed to feel. I didn't know what she was going to do, but as soon as she shocked me, I gasped from the weird feeling and then saw hundreds of little pinpoints of light in my vision, like a huge swarm of fireflies. While that's cool and all, it's pretty surprising while talking to your doctor.
So after we discussed for a while, she gave me two options:
1) Do a catheter test to see if she can see any particular section in my heart that is causing the increased heartbeat and the PVCs. She'd do this the cath lab and they would inject me with adrenaline to try to get my heart to act up. She could then possibly burn that little section of my heart to get rid of the tissue that is causing the problem. The bad side is that since I feel everything in my heart, this would probably be really uncomfortable and can be dangerous since my heart function is so weak anyway.
2) Start taking a drug called sotolol which is like one of the drugs I'm taking now, except it has anti-arrhythmia properties to it, so it could very well help with the fast heartbeats and the PVCs. The bad part is that it doesn't have the life lengthening properties that the drug I am on now has. Also, I would need to stay in the hospital for a few days after first taking it to make sure I did ok on it.
My thought was "HOORAY! Here are some options that can get me out of this mess!". Yeah, I know that neither option sounded that great, but at least I wasn't being told that I would just have to live with this.
My vote was the sotolol because it would be less invasive than burning off a piece of my heart. Plus, my hope was that I could take it for awhile and then maybe get back on the old drug later, so I could keep getting the long term benefits of the old drug.
Well, the doc was about to admit me to start the sotolol and get this show on the road, when she decided to call my cardiologist, just to get her blessing. Suffice it to say, the blessing was not given. My cardiologist freaked out and said that sotolol was way too risky and that she was not taking me off the other drug.
So by the end of the visit, my cardiologist said I could take a little more of my current drug which may help the PVCs a bit. Yipee. I was not impressed.
I held it together until I got to the parking lot and then cried and cried and cried. I just felt like I was so close to having a solution and then it got taken away. Logically, I know my doctor is right, long term effects are what we have to focus on. But man, it's hard to worry about feel crummy all the time.
After a while I composed myself and then my friend Lauren and I went to dinner and a movie. It was a fun girls night and just what I needed. Thank you Lauren!
Anyway, today is a new day and I have a fresh perspective. My hope is the drug I'm on will start easing up the PVCs and things will start to get better. Better attitude=feeling better! : )
And on that note, I'm going to take a little nap!
Love you all!
Jana
3/7/2010- In which you learn about PVCs
Grr. Last night was a real bummer-o-la.
Let me give you a little background on what's been going on...
I've been having these episodes where my heart will feel like it's beating so hard it knocks me around, I can't breathe well, and I get dizzy. I've almost gone to the hospital at least 5 times, but I just waited it out and 5 or 6 hours later, it would go away. We've actually been on our way to the hospital a few times when I have Nick turn around because I start feeling better.
I've told my doc about this several times and that's what lead to the King of Hearts monitor. She wanted to see what my heart was doing during these episodes. I had an episode the day before my last doctors appointment, so she got to see exactly what had happened. And it was pretty anticlimatic. All she saw were a bunch of PVCs (Premature Ventricular Complexes) which are also called "skipped beats" or "irregular beats". Everyone keeps telling me the PVCs are not dangerous at all unless they happen every other beat or every three beats or something.
My concern has been that when I have an episode like this, it stops me in my tracks. I have to lay on the couch and all I can do is listen to my heart pounding, try to breathe, and not move. It's pretty lousy.
So on to last night- I decided I was sick and tired of this craziness, so I went to the ER. I was having "an episode" and had just been feeling lousy all day. My chest had also been hurting a bit so when I told them that at the registration desk I got the speedy check in routine. I was in a bed getting an EKG within 5 minutes.
Surprisingly, the EKG said I was having a severe heart attack! Then they adjusted the tabs and saw I was ok. Just a little ER practical joke I guess. ; )
All my tests and labs came back normal (for me) although they saw me having the PVCs all night. After 3 hours they decided they couldn't really tell why the PVCs were effecting me so strongly. I almost started crying from frustration. The ER doc literally said "well, we don't know why you're feeling so bad, so I guess you should just go home". Barf.
But then the cardiologist came down (A very nice man who'd worked on me at one of my previous stints in the hospital) and we talked about how rotten I was feeling. I learned that the PVCs are essentially a nerve in my heart freaking out, and that causes the muscle around it to twitch. And the muscle happens to be my entire heart. Since my heart is so beat up anyway, it makes sense that any extra work (this twitching) could really have an effect on me.
I told him we have to find a solution for this- I just can't accept the answer that "it's just the way it is". He said we can tweak my meds to some degree, and there is also a procedure we can look into called Ablation.
Ablation is where the doc puts a catheter through my neck into my heart and burns a tiny burn on the section of my heart that is causing the PVCs. Then scar tissue forms and the nerve that was sending the signal for the PVCs is disturbed and doesn't send them anymore.
It sounds wonderful to me, but the doc said he's not at all sure they will do it. He said it's not dangerous normally, but since my heart is so weak, it's usually not great to damage a heart like mine (that's already damaged). But I want to speak to an electrophysiologist (the doctor that would preform the procedure) anyway. I'll certainly want to weigh the risks, but I don't want to give up on that option. I got an urgent appointment with the electrophysiologist on the 12th, so I'll know more then.
So we came home last night and got a good nights sleep in our own bed and I woke up in good spirits today. Thank goodness for that Cardiologist last night, or I may have acted on my impluse to clock the ER doc in the nose.
So today, I'll just chill out and watch the Oscars. My vote is Sandra Bullock for the Blindside. She was as sassy as they come in that movie!
I'll keep you posted on anything else cool that happens!
Love,
Jana
Let me give you a little background on what's been going on...
I've been having these episodes where my heart will feel like it's beating so hard it knocks me around, I can't breathe well, and I get dizzy. I've almost gone to the hospital at least 5 times, but I just waited it out and 5 or 6 hours later, it would go away. We've actually been on our way to the hospital a few times when I have Nick turn around because I start feeling better.
I've told my doc about this several times and that's what lead to the King of Hearts monitor. She wanted to see what my heart was doing during these episodes. I had an episode the day before my last doctors appointment, so she got to see exactly what had happened. And it was pretty anticlimatic. All she saw were a bunch of PVCs (Premature Ventricular Complexes) which are also called "skipped beats" or "irregular beats". Everyone keeps telling me the PVCs are not dangerous at all unless they happen every other beat or every three beats or something.
My concern has been that when I have an episode like this, it stops me in my tracks. I have to lay on the couch and all I can do is listen to my heart pounding, try to breathe, and not move. It's pretty lousy.
So on to last night- I decided I was sick and tired of this craziness, so I went to the ER. I was having "an episode" and had just been feeling lousy all day. My chest had also been hurting a bit so when I told them that at the registration desk I got the speedy check in routine. I was in a bed getting an EKG within 5 minutes.
Surprisingly, the EKG said I was having a severe heart attack! Then they adjusted the tabs and saw I was ok. Just a little ER practical joke I guess. ; )
All my tests and labs came back normal (for me) although they saw me having the PVCs all night. After 3 hours they decided they couldn't really tell why the PVCs were effecting me so strongly. I almost started crying from frustration. The ER doc literally said "well, we don't know why you're feeling so bad, so I guess you should just go home". Barf.
But then the cardiologist came down (A very nice man who'd worked on me at one of my previous stints in the hospital) and we talked about how rotten I was feeling. I learned that the PVCs are essentially a nerve in my heart freaking out, and that causes the muscle around it to twitch. And the muscle happens to be my entire heart. Since my heart is so beat up anyway, it makes sense that any extra work (this twitching) could really have an effect on me.
I told him we have to find a solution for this- I just can't accept the answer that "it's just the way it is". He said we can tweak my meds to some degree, and there is also a procedure we can look into called Ablation.
Ablation is where the doc puts a catheter through my neck into my heart and burns a tiny burn on the section of my heart that is causing the PVCs. Then scar tissue forms and the nerve that was sending the signal for the PVCs is disturbed and doesn't send them anymore.
It sounds wonderful to me, but the doc said he's not at all sure they will do it. He said it's not dangerous normally, but since my heart is so weak, it's usually not great to damage a heart like mine (that's already damaged). But I want to speak to an electrophysiologist (the doctor that would preform the procedure) anyway. I'll certainly want to weigh the risks, but I don't want to give up on that option. I got an urgent appointment with the electrophysiologist on the 12th, so I'll know more then.
So we came home last night and got a good nights sleep in our own bed and I woke up in good spirits today. Thank goodness for that Cardiologist last night, or I may have acted on my impluse to clock the ER doc in the nose.
So today, I'll just chill out and watch the Oscars. My vote is Sandra Bullock for the Blindside. She was as sassy as they come in that movie!
I'll keep you posted on anything else cool that happens!
Love,
Jana
2/26/10- Funky heartbeats and excercise with the elderly
Hi All,
I went to rehab!! But a few days ago I went to the doc again, so I'll start with that.
I went to the doc on Tuesday to have a check up and to figure out why I'm having those fast heartbeat runs. They interrogated Sparky again, and saw more of those fast beats but they wanted to get an idea of what is going on longer term, so they have me on the King of Hearts again. That is the portable EKG I will wear for 30 days. It's no big deal, and it will be good to try and catch lots of these beats to see what exactly is going on. So you'll be seeing me wired up for another month or so.
Over the last few days, I've been feeling quite good, so I decided to go to cardiac rehab. I put it off last week because I felt lousy, but Wednesday I was ready to go! I'm doing rehab at Virginia Mason (the hospital where I orginally went to the ER to be be diagnosed). The rehab place is pretty small but there are never more than 3 or 4 people there, so it's not crowded. Dave is the therapist and Cathy is the nurse. My first day, Dave hooked me up to the heart monitors (which, paired with the King of Hearts, means I has 6 leads on at one time). He then took my blood pressure (first time out of about 8) and we got started. I did stretches, 10 minutes on the treadmill (walking at a snails pace), and 7 minutes on the bike. Then I stretched again and that was it! Not a marathon exactly, but I was tired at the end!
On the first day, my heartrate was really pretty high. I started off at about 110 (normal resting heartrate is about 70, my normal is about 95) and then during the excercise I was getting around 138. That's pretty darn high. And you know what? When I got off the treadmill and was resting before the bike, I was talking to Dave and Cathy and we were laughing, and my heart rate went to 146! No wonder talking and laughing for too long wears me out! But the second day of rehab was much better, and I my heartrate didn't go above 126. : ) Big improvement!
Everyone there has been really kind and welcoming. I am definately the youngest person there by at least 30 years, but it's still a lot of fun. My new friend Steve (last name Martin, ha!) and I were watching the Olympics and he was talking about curling. I told him Nick loves it, but I think it's totally boring...ice mopping. He just howled..."Ice Mopping! That's hilarious! Hahaha! Honey, you're a hoot!". Easy crowd. ; )
Linda is lady in her early 60s who had emergency open heart surgery after they found a serious heart problem with her while she was under anestisia (sp?) for knee surgery. She's recovering pretty well, and likes to chat. She's been very nice except when I was on the bike. I noticed her looking at me for awhile while she was resting. I thought she was just admiring my excellent biking form, but it turns out she was waiting for the bike and was getting some annoyed with me. After I finished my 7 minutes, she says snarkily to Dave "Is she DONE?". I ran off to the treadmill with my tail between my legs. I'll get bolder later, but I want to stand back for now and see the pecking order. I definately don't want Linda putting a hit out on me or anything...
In other news, Gay and Pete are here, and we're having a great time catching up. Nick and Pete went to Snoqualmie Falls yesterday and it was lovely. It was a great day in Seattle yesterday...probably high 50s and plenty of sun poking through the clouds. Spring, is that you? Are you almost here? I like the thought of that!
Well, that's all I've got for now!
Love,
Jana
Jenny Lavik So glad to hear you went to Cardiac rehab! Also really glad to hear you are feeling better than last week! Have a great weekend with Gay and Pete! Love and Miss you!
Sandy Farrill Tell Gay & Pete hi. We miss spending time with them. Dad Glad to hear about the second day ecercise results. Snarkily, a great word.
Sandy Farrill So much for getting Dad his own facebook! He is still using mine. I'm glad you are feeling better. Your rehab class sounds fun. Give Gay and Pete a hug for us. We bought that house in OK and are going to look at it and some others this weekend.
Michelle Gonzalez McMullen It's good to be greatful for the little things!
Maggie Parry Salvino Take good care, Jana. Maybe you can meet a guy for me in your rehab class...LOL!!! ;)
Rosa Roberge Love your update :) Ice mopping. Too funny. When Jacob saw curling he said "I need that broom!" (he loves mops and brooms). Curling is indeed a very curious sport. Looking forward to hearing more. The ongoing saga with Linda - could be quite the drama. LOL.
Tammy Chriss *smiling and laughing* i love your outlook and the way you perceive things around you...you always make me smile and laugh {{tight hugs}} Come on Girl...hang in there and get the gold star on your forehead while Linda gets the silver star on hers...rooting for you
Lisa Mushel nice to see your smiling face - Linda will soon be one of your best friends!
I went to rehab!! But a few days ago I went to the doc again, so I'll start with that.
I went to the doc on Tuesday to have a check up and to figure out why I'm having those fast heartbeat runs. They interrogated Sparky again, and saw more of those fast beats but they wanted to get an idea of what is going on longer term, so they have me on the King of Hearts again. That is the portable EKG I will wear for 30 days. It's no big deal, and it will be good to try and catch lots of these beats to see what exactly is going on. So you'll be seeing me wired up for another month or so.
Over the last few days, I've been feeling quite good, so I decided to go to cardiac rehab. I put it off last week because I felt lousy, but Wednesday I was ready to go! I'm doing rehab at Virginia Mason (the hospital where I orginally went to the ER to be be diagnosed). The rehab place is pretty small but there are never more than 3 or 4 people there, so it's not crowded. Dave is the therapist and Cathy is the nurse. My first day, Dave hooked me up to the heart monitors (which, paired with the King of Hearts, means I has 6 leads on at one time). He then took my blood pressure (first time out of about 8) and we got started. I did stretches, 10 minutes on the treadmill (walking at a snails pace), and 7 minutes on the bike. Then I stretched again and that was it! Not a marathon exactly, but I was tired at the end!
On the first day, my heartrate was really pretty high. I started off at about 110 (normal resting heartrate is about 70, my normal is about 95) and then during the excercise I was getting around 138. That's pretty darn high. And you know what? When I got off the treadmill and was resting before the bike, I was talking to Dave and Cathy and we were laughing, and my heart rate went to 146! No wonder talking and laughing for too long wears me out! But the second day of rehab was much better, and I my heartrate didn't go above 126. : ) Big improvement!
Everyone there has been really kind and welcoming. I am definately the youngest person there by at least 30 years, but it's still a lot of fun. My new friend Steve (last name Martin, ha!) and I were watching the Olympics and he was talking about curling. I told him Nick loves it, but I think it's totally boring...ice mopping. He just howled..."Ice Mopping! That's hilarious! Hahaha! Honey, you're a hoot!". Easy crowd. ; )
Linda is lady in her early 60s who had emergency open heart surgery after they found a serious heart problem with her while she was under anestisia (sp?) for knee surgery. She's recovering pretty well, and likes to chat. She's been very nice except when I was on the bike. I noticed her looking at me for awhile while she was resting. I thought she was just admiring my excellent biking form, but it turns out she was waiting for the bike and was getting some annoyed with me. After I finished my 7 minutes, she says snarkily to Dave "Is she DONE?". I ran off to the treadmill with my tail between my legs. I'll get bolder later, but I want to stand back for now and see the pecking order. I definately don't want Linda putting a hit out on me or anything...
In other news, Gay and Pete are here, and we're having a great time catching up. Nick and Pete went to Snoqualmie Falls yesterday and it was lovely. It was a great day in Seattle yesterday...probably high 50s and plenty of sun poking through the clouds. Spring, is that you? Are you almost here? I like the thought of that!
Well, that's all I've got for now!
Love,
Jana
Jenny Lavik So glad to hear you went to Cardiac rehab! Also really glad to hear you are feeling better than last week! Have a great weekend with Gay and Pete! Love and Miss you!
Sandy Farrill Tell Gay & Pete hi. We miss spending time with them. Dad Glad to hear about the second day ecercise results. Snarkily, a great word.
Sandy Farrill So much for getting Dad his own facebook! He is still using mine. I'm glad you are feeling better. Your rehab class sounds fun. Give Gay and Pete a hug for us. We bought that house in OK and are going to look at it and some others this weekend.
Michelle Gonzalez McMullen It's good to be greatful for the little things!
Maggie Parry Salvino Take good care, Jana. Maybe you can meet a guy for me in your rehab class...LOL!!! ;)
Rosa Roberge Love your update :) Ice mopping. Too funny. When Jacob saw curling he said "I need that broom!" (he loves mops and brooms). Curling is indeed a very curious sport. Looking forward to hearing more. The ongoing saga with Linda - could be quite the drama. LOL.
Tammy Chriss *smiling and laughing* i love your outlook and the way you perceive things around you...you always make me smile and laugh {{tight hugs}} Come on Girl...hang in there and get the gold star on your forehead while Linda gets the silver star on hers...rooting for you
Lisa Mushel nice to see your smiling face - Linda will soon be one of your best friends!
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