Hi All,
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
4/27/2010- Vacation at last!
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
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
Subscribe to:
Posts (Atom)