Hi All!
Well, this has been uneventful...yay! I got to the hospital Monday afternoon and they put on my first dose of Sotolol. An hour after each dose, I get an EKG to see if the QRS waves on my EKG widen. If they do, I'll need to come off the drug because that can cause arrhythmias (oddly so, because the drug is an anti-arhythmic. Hmmm.)
So far, so good though! All is normal, which are here is excellent news. The docs did notice Sparky doing some odd pacing things, which they determined that Sparky's 3rd lead that wasn't supposed to pace me was pacing every once in a while, and giving me that sick, dizzy, just punched feeling. It wasn't doing anything for me therapeutically, so my doc turned that lead off. Hopefully, that will settle that problem-o once and for all.
I've been getting a mountain of stuff done while I'm here- reading I needed to catch up on, bills, insurance and disability paperwork. It's like I've been on a paperwork/to-do list spa get-a-way! (Minus the spa stuff. Though they have changed the soap to a nice cucumber melon scented body wash, so that's pretty swanky.)
I've also relearned the beauty of Ambien. I try not to take it at home, because I get used to it, and it stops working. But I always take in the hospital because with the beeping, talking, and old people hollering, a good night's sleep is always 10 milligrams away.
Since I hadn't used Ambien in awhile, it really effected me. I konked out, and woke up the next morning feeling like a champ. Ah, perfect. Only later did I find out that I had gotten an EKG at 2am and though the nurse said I was talking and seemed totally alert, I have no recollection of said EKG occurring. So the question is: Is this a new technique to pad the bill?"Oh Mrs Morrelli, of COURSE you got an EKG at 2am. You just don't remember!". Or is paranoia a side effect of the Ambien? Who's to say?
I did run into one of my favorite docs who is not my doc. She is a resident, and works on the cardiology team, and right now I'm a ward of the electrophyisology team. We were talking in the halls, and I was telling her how I'm just trying to figure out what I can expect from life from here on out. I seem pretty stable these days, better energy than before, but still get completely wrecked if I do too much. The meds have pretty much done what they are going to do, so it's not unreasonable to think I'll be like this for the long term. The good news is she said frequently if people are this stable, they don't usually have a big fall of the cliff and get tons worse. So it was nice to have that fear allayed. So the next step for me is to really figure out how I want to live my life- and I mean live it. Not just waiting with the hope that I'm going to pop up one day all better, but doing what I can to increase the quality of my life, and to enjoy life. That doesn't need to be put on hold. I don't have time to put that on hold. So stay tuned, I expect to see some changes coming around the bend!
In other news- I've found the best thing on the Heart Healthy Menu here! (that is quite a feat). 1st- The Montlake Cut sandwich- wheat bread, roasted turkey, provolone, roasted red peppers, avocado, light mayo. Delish!! 2nd- They have recently added black beans to the menu (I know, because I could recite that menu to you all right now, but I'll leave it as a surprise in case you're ever here). So I mashed up my black beans, and ate them with Baked Lay's, like bean dip! Talk about a MacGuyver move right? Totally impressed with myself.
Well, I'm off to MacGuyver some breakfast up now...Scrambled eggs, peanut butter and ketchup? Hmm, my winning streak may be over.
I love you all!
Jana
I'm approved! 2/25/2011
Hi All,
It's a good Friday! I just got notification that I was approved for Social Security Disability. This is awesome because it means that will be eligible to apply for Medicare in about a year. That is fantastic, because if I need a transplant in the future, Medicare will help with the bills immensely. Fantastic.
My monthly disability payments won't increase, because my private disability insurance will decrease by the amount of SSD I get, but it is more secure than the private insurance, and now that I am approved, there are way fewer hoops to jump through.
I was approved in about 5 months, and didn't have to appeal. That is pretty rare, as most of the time Social Security denies the petition at first, and several appeals become necessary. I guess I am lucky (?) enough to have a condition that is completely documented and my labs are all well within the approval standards.
I was jumping for joy when I got the letter this morning. Ok, I didn't jump but I did do a mean Jersey Shore fist pump. Crossing this off the stress list is such a relief. Nick was a little less excited. To him, it's just another reminder of how sick I am. I told him that nothing has changed. I'm the exact same as I have been, we just have more financial security now. It's definitely a good thing, but I understand it's just another dose of reality. Blech.
On the health front, I'm doing pretty good. I stopped the Amiodarone about 6 days ago, and I am pretty sure the jerking is becoming less frequent. One bummer is that I have felt some strange heartbeats and racing the last few days. It kind of feels like I got the wind knocked out of me and breathing is hard for a few minutes. I'm not sure if it could be a result of stopping the Amiodarone. That drugs stays in your system for at least a month, but it still could have something to do with it. I called my doc and she'll let me know if I need to stop by to have Sparky interrogated. I'm sure it's nothing, but I always like to make sure.
I can't remember if I told you I was going into the hospital to start Sotalol on Monday, March 7th. They were going to have me come in on Friday, the 4th, but I have fun plans that weekend and I have no desire to miss them for a stay in the 4 star resort that is UWMC. So Monday it is!
Well, I'm off to go stare dreamily at my social security approval letter. It's gorgeous. : )
Love,
Jana
It's a good Friday! I just got notification that I was approved for Social Security Disability. This is awesome because it means that will be eligible to apply for Medicare in about a year. That is fantastic, because if I need a transplant in the future, Medicare will help with the bills immensely. Fantastic.
My monthly disability payments won't increase, because my private disability insurance will decrease by the amount of SSD I get, but it is more secure than the private insurance, and now that I am approved, there are way fewer hoops to jump through.
I was approved in about 5 months, and didn't have to appeal. That is pretty rare, as most of the time Social Security denies the petition at first, and several appeals become necessary. I guess I am lucky (?) enough to have a condition that is completely documented and my labs are all well within the approval standards.
I was jumping for joy when I got the letter this morning. Ok, I didn't jump but I did do a mean Jersey Shore fist pump. Crossing this off the stress list is such a relief. Nick was a little less excited. To him, it's just another reminder of how sick I am. I told him that nothing has changed. I'm the exact same as I have been, we just have more financial security now. It's definitely a good thing, but I understand it's just another dose of reality. Blech.
On the health front, I'm doing pretty good. I stopped the Amiodarone about 6 days ago, and I am pretty sure the jerking is becoming less frequent. One bummer is that I have felt some strange heartbeats and racing the last few days. It kind of feels like I got the wind knocked out of me and breathing is hard for a few minutes. I'm not sure if it could be a result of stopping the Amiodarone. That drugs stays in your system for at least a month, but it still could have something to do with it. I called my doc and she'll let me know if I need to stop by to have Sparky interrogated. I'm sure it's nothing, but I always like to make sure.
I can't remember if I told you I was going into the hospital to start Sotalol on Monday, March 7th. They were going to have me come in on Friday, the 4th, but I have fun plans that weekend and I have no desire to miss them for a stay in the 4 star resort that is UWMC. So Monday it is!
Well, I'm off to go stare dreamily at my social security approval letter. It's gorgeous. : )
Love,
Jana
It's a date! 2/22/2011
Hi All,
Alright, I've got the switch to Sotolol scheduled! I will go to the hospital on Monday, March 7th, and stay for 3 days while the drug is started. The docs will watch my EKG to make sure my QT waves don't widen (don't ask me what that means exactly, but that's what we're watching out for).
I'm so grateful there is another medication out there for me. There is so much about this condition that I have absolutely no control over, so it feels awesome when I have a concern about a problem and can do something about it.
The good news is I will be in the hospital but I won't feel lousy, so I should have plenty of time to scope out the hospital drama. You'd think the cardiac floor would be a real snooze-fest, but it's surprisingly interesting. Stay tuned!
Love to you all,
Jana
Alright, I've got the switch to Sotolol scheduled! I will go to the hospital on Monday, March 7th, and stay for 3 days while the drug is started. The docs will watch my EKG to make sure my QT waves don't widen (don't ask me what that means exactly, but that's what we're watching out for).
I'm so grateful there is another medication out there for me. There is so much about this condition that I have absolutely no control over, so it feels awesome when I have a concern about a problem and can do something about it.
The good news is I will be in the hospital but I won't feel lousy, so I should have plenty of time to scope out the hospital drama. You'd think the cardiac floor would be a real snooze-fest, but it's surprisingly interesting. Stay tuned!
Love to you all,
Jana
And she's off! (well, about to be off) 2/11/2010
Hi All,
Got some good news...I get to get off Amiodarone!! That's the drug with all the awful side effects like the jerking and the cataracts (and 38 additional serious side effects that I haven't seen yet, but am constantly worried about).
I just talked to my nurse practioner, and she let me know my cardiologist and my electrophysiologist had a pow wow, and they agreed I can come off the drug. The next step is figuring out the best way and time to get me on the replacement drug (Sotolol). I can't just stop the Amiodarone; I have to switch right away to Sotolol. And that is a little tricky.
Sotolol can sometimes cause dangerous heart rhythms, but the good news is the rhythms show up right away if they are going to make an appearance. So I will probably have to be admitted into the hospital for a few days to start Sotolol, just so the docs can watch every heartbeat and make sure the bad rhythms aren't occurring.
I go see the doc on Tuesday, and hopefully we'll have a game plan then. So, if all goes according to plan, I may be off Amiodarone within the next week or two. Hot dog!
Well, that's all the news I have for now- I'll keep you posted on the next steps. I can't wait!
: )
Love,
Jana
Got some good news...I get to get off Amiodarone!! That's the drug with all the awful side effects like the jerking and the cataracts (and 38 additional serious side effects that I haven't seen yet, but am constantly worried about).
I just talked to my nurse practioner, and she let me know my cardiologist and my electrophysiologist had a pow wow, and they agreed I can come off the drug. The next step is figuring out the best way and time to get me on the replacement drug (Sotolol). I can't just stop the Amiodarone; I have to switch right away to Sotolol. And that is a little tricky.
Sotolol can sometimes cause dangerous heart rhythms, but the good news is the rhythms show up right away if they are going to make an appearance. So I will probably have to be admitted into the hospital for a few days to start Sotolol, just so the docs can watch every heartbeat and make sure the bad rhythms aren't occurring.
I go see the doc on Tuesday, and hopefully we'll have a game plan then. So, if all goes according to plan, I may be off Amiodarone within the next week or two. Hot dog!
Well, that's all the news I have for now- I'll keep you posted on the next steps. I can't wait!
: )
Love,
Jana
Effects on the side, please- 2/3/2010
Hi All,
It's been so long! I've been lucky enough to have a really good run of it for awhile, and I haven't had much to tell you. Sparky 2.0's pacemaker continues to be the best thing that has happened to me in the last year and half. My heart is beating strong and regularly, my blood pressure is back where it should be, and my energy is much better than it was for the month or so I was dealing with the terribly low heart rate.
So in general, things have been really good. The only snag I've run across is I'm starting to see some lousy side effects from my drugs, and they may have become kind of serious. I think I told you guys a long time ago about this drug called Amiodarone. It's the drug that stops the dangerous rhythms that caused Sparky 1.0 to shock me. Well, the drug is working perfectly for that purpose. I haven't had one bad run of heart rhythms since starting it. But I'd been warned about the nasty side effects of the drug from the beginning. Lung deterioration, kidney problems, vision problems, neurological problems...the severe side effects lists for most drugs includes 3-4 conditions. This drug's list includes something like 40.
Well, a few months ago I started noticing I was having muscle jerks sometimes. About 5-10 times a day, my whole body would jerk, like a reflex. The jerk originates from lots of places- my calf, my arm, my neck, my stomach. It doesn't hurt, it's just surprising.
I mentioned it to my doctors, and they referred me to a neurologist this month. After his exam, the neurologist said he thinks the jerks are likely from the Amiodarone. To be sure it's not something else, he sent me for an EEG, which is where my head gets hooked up to about 20 electrodes and I lay in bed with my eyes closed for an hour. The results haven't come back yet, but the most likely answer is still the drug.
The other odd thing was what my optometrist told me at my eye exam a few months ago. He said I was developing the beginning stages of glaucoma and have some cataracts. He said this wasn't 100% attributable to the drug, but that it was likely. He scheduled a follow up test for later this spring, so we can see if the disease is progressing.
My nurse practitioner and I discussed all of these things this week at my appointment, and she said the vision problems can get serious, and that may very well mean I have to come off Amiodarone. There is another drug called Sotolol that can be used instead of Amiodarone. It's not quite as good at suppressing the bad rhythms, but it has far fewer side effects.
If I go on Sotolol, I'll have to go to the hospital for a few days while I start the drug, because I need to be observed for adverse reactions. But I really think it's worth it. The Amiodarone is a great drug, but I'm way too scared of the side effects.
That's the thing that's hitting me with this situation. Until now, I've been able to push the thought of side effects out of my mind, and just focus on the task at hand. But I'm starting to feel like it's time we pay close attention to the long term effects, because I want to be around for years and years, and I'm going to need my vision and kidneys and lungs. I know my doctors have the best interest at heart, and are going to watch out for all of those risks. So if they say we need to try Sotolol, let's do it.
I'll keep you posted on what happens. My guess is we will know which direction this will take in a a few weeks. But yay for solutions to lousy problems!
Love to you all,
Jana
It's been so long! I've been lucky enough to have a really good run of it for awhile, and I haven't had much to tell you. Sparky 2.0's pacemaker continues to be the best thing that has happened to me in the last year and half. My heart is beating strong and regularly, my blood pressure is back where it should be, and my energy is much better than it was for the month or so I was dealing with the terribly low heart rate.
So in general, things have been really good. The only snag I've run across is I'm starting to see some lousy side effects from my drugs, and they may have become kind of serious. I think I told you guys a long time ago about this drug called Amiodarone. It's the drug that stops the dangerous rhythms that caused Sparky 1.0 to shock me. Well, the drug is working perfectly for that purpose. I haven't had one bad run of heart rhythms since starting it. But I'd been warned about the nasty side effects of the drug from the beginning. Lung deterioration, kidney problems, vision problems, neurological problems...the severe side effects lists for most drugs includes 3-4 conditions. This drug's list includes something like 40.
Well, a few months ago I started noticing I was having muscle jerks sometimes. About 5-10 times a day, my whole body would jerk, like a reflex. The jerk originates from lots of places- my calf, my arm, my neck, my stomach. It doesn't hurt, it's just surprising.
I mentioned it to my doctors, and they referred me to a neurologist this month. After his exam, the neurologist said he thinks the jerks are likely from the Amiodarone. To be sure it's not something else, he sent me for an EEG, which is where my head gets hooked up to about 20 electrodes and I lay in bed with my eyes closed for an hour. The results haven't come back yet, but the most likely answer is still the drug.
The other odd thing was what my optometrist told me at my eye exam a few months ago. He said I was developing the beginning stages of glaucoma and have some cataracts. He said this wasn't 100% attributable to the drug, but that it was likely. He scheduled a follow up test for later this spring, so we can see if the disease is progressing.
My nurse practitioner and I discussed all of these things this week at my appointment, and she said the vision problems can get serious, and that may very well mean I have to come off Amiodarone. There is another drug called Sotolol that can be used instead of Amiodarone. It's not quite as good at suppressing the bad rhythms, but it has far fewer side effects.
If I go on Sotolol, I'll have to go to the hospital for a few days while I start the drug, because I need to be observed for adverse reactions. But I really think it's worth it. The Amiodarone is a great drug, but I'm way too scared of the side effects.
That's the thing that's hitting me with this situation. Until now, I've been able to push the thought of side effects out of my mind, and just focus on the task at hand. But I'm starting to feel like it's time we pay close attention to the long term effects, because I want to be around for years and years, and I'm going to need my vision and kidneys and lungs. I know my doctors have the best interest at heart, and are going to watch out for all of those risks. So if they say we need to try Sotolol, let's do it.
I'll keep you posted on what happens. My guess is we will know which direction this will take in a a few weeks. But yay for solutions to lousy problems!
Love to you all,
Jana
3 Things!- 12/22/10
Hi All,
Man, it's been almost a month since I've written anything- time flies when you're not in the hospital!
Things have been really good around here. Since I've healed up from the surgery, I feel excellent. I'm not sure if I feel better than I did a few months ago (maybe) but I feel 100x better than I did the month before I got Sparky 2.0.
I think the main difference is that I feel warm and can think so much more clearly. I was also hearing my heart pound everywhere on my body- I felt like I could see my pulse in my fingers, ears, arms, legs- everywhere. I've since learned that can happen when your heart rate is erratic and weak. So that's gone now too. Ahhhhh (she says with a contented sigh).
Sparky got his 1 month check up today. All is well! The doc that tests the device was training another doc on the testing equipment, so I got the detailed explanation of everything she was looking at on the computer screen, which was pretty cool. I found out that if my heart ever goes into one particular weird rhythm, Sparky will sound an alarm. From my chest. I know- wild. She tested the alarm for me-it sounds like a European police car. "Woooga wooooga" is the best explanation I've got for you. Crazy.
I've had a lot more energy overall this last month- I can do 3 things each day now if I want. Examples include 1) Go to rehab, 2) Go to the grocery store, 3) Do the dishes. Or 1) Get dressed all cute and style my hair, 2) Go shopping for a little while, and 3) Go to happy hour with my girlfriends. I'm leaning towards the latter, but that's just me.
So the energy has been great, but it's like I've gotten a taste of freedom and I want more. I feel like I have more energy than my heart can keep up with. For example- I've been having this raging urge to run lately. I just want so much to have that feeling of working hard, sweating, and willing myself to make it to the finish line. I want to be able to push myself and be stopped by my muscles burning, not because I feel like I got punched in the heart and I can't see. I used to hate sweating and working out hard, and now it's all I want to do. So next time you're on the treadmill and hating life- think of me and enjoy the sweat a little ok? : )
That's all I've got for today-Merry Christmas to you all and I'll see you in the New Year!
XO,
Jana
Man, it's been almost a month since I've written anything- time flies when you're not in the hospital!
Things have been really good around here. Since I've healed up from the surgery, I feel excellent. I'm not sure if I feel better than I did a few months ago (maybe) but I feel 100x better than I did the month before I got Sparky 2.0.
I think the main difference is that I feel warm and can think so much more clearly. I was also hearing my heart pound everywhere on my body- I felt like I could see my pulse in my fingers, ears, arms, legs- everywhere. I've since learned that can happen when your heart rate is erratic and weak. So that's gone now too. Ahhhhh (she says with a contented sigh).
Sparky got his 1 month check up today. All is well! The doc that tests the device was training another doc on the testing equipment, so I got the detailed explanation of everything she was looking at on the computer screen, which was pretty cool. I found out that if my heart ever goes into one particular weird rhythm, Sparky will sound an alarm. From my chest. I know- wild. She tested the alarm for me-it sounds like a European police car. "Woooga wooooga" is the best explanation I've got for you. Crazy.
I've had a lot more energy overall this last month- I can do 3 things each day now if I want. Examples include 1) Go to rehab, 2) Go to the grocery store, 3) Do the dishes. Or 1) Get dressed all cute and style my hair, 2) Go shopping for a little while, and 3) Go to happy hour with my girlfriends. I'm leaning towards the latter, but that's just me.
So the energy has been great, but it's like I've gotten a taste of freedom and I want more. I feel like I have more energy than my heart can keep up with. For example- I've been having this raging urge to run lately. I just want so much to have that feeling of working hard, sweating, and willing myself to make it to the finish line. I want to be able to push myself and be stopped by my muscles burning, not because I feel like I got punched in the heart and I can't see. I used to hate sweating and working out hard, and now it's all I want to do. So next time you're on the treadmill and hating life- think of me and enjoy the sweat a little ok? : )
That's all I've got for today-Merry Christmas to you all and I'll see you in the New Year!
XO,
Jana
Sparky- Version 2.1- 11/28/2010
Hi All,
Ah, I feel like I've finally emerged from the post-surgery fog and can think straight enough to write. Nice!
The plan had been to get this surgery done on this last Monday. It wasn't an emergency, but having the pacing wire turned off was making me feel awful. Back to how been feeling all month-exhausted, dizzy, nauseas, lousy. So my doc wanted to correct this asap. But when Monday rolled around, we awoke to a lovely blanket of beautiful snow. Ooops.
As you might expect, Seattleites don't drive very well on snow (you may not know that they also don't drive that well in rain, but I digress). The hospital called and asked if we could postpone until Tuesday, as half of their staff couldn't come in. We said that was no big deal, and instead went in on Tuesday for the big day.
I was very familiar with the procedure by this point (this being my 3rd go round) so we whipped through the prep stuff and then I was wheeled off to try this again.
When I found out I was going to have this correction, I though they would cut a small hole in my 3 inch incision site and fix it from here. No, that would be too easy I guess. They cut the whole incision open again, and got to work.
As a note, my doc said when she saw the xray from my ER trip, she was pretty shocked. Not only had the pacing wire gone rougue and landed at my diaphragm, the entire casing of Sparky 2.0 had rotated 45 degrees. She had never seen one move out of place so badly.
As I learned that, I wondered if perhaps she wasn't at her most focused when she put in Sparky 2.0. Maybe she put on an episode of Grey's Anantomy for some inspiration, but got distracted by Dr. Yang's new career choice as a bartender who shakes more than just martinis. Who's to say? Or maybe when I got out of surgery last week and my shoulder felt just fine, I shouldn't have been whipping that arm around at da club. Hahahaha. Me at the club- hilarious. But I think I was pretty liberal with the arm moving, because it didn't really hurt. Oh well, who know's what happened, but I was ready to get it fixed.
The worst part of this surgery was because my blood pressure was so low (like around 75/30 instead of my normal 95/55), my doc couldn't use any sedation for the surgery. Just local anesthetic. The pain wasn't too terrible, but I felt every tug and heard way too much. The sounds of surgery are not comforting to the recipient of said surgery. I held it together and then started to freak out, but she got done right when I couldn't take it much more. Because everything was so messed up, the one hour procedure turned into 3 very tiring hours. When the doc finished, she had replaced the rougue wire, repositioned Sparky 2.0, and stiched him in.
Recovery was definately harder than last time. I felt like I'd been hit by a very small truck. But that's the way I felt after I got Sparky 1.0, so I took that as a good sign. I've spent this week resting a lot, but doing more every day. Today I almost feel normal! It's SO good.
Wanna hear one of the coolest things? Last week I told you that even with Sparky 2.0, I was feeling the pacing at least a few hours a day. Not painful, just uncomfortable and annoying. Well- no more!! Sparky paces me 100% of the time now, and I don't feel a thing! My doc thought that would happen and I'm so pleased.
Another awesome change is that my heart now feels warm! I didn't even realize that my chest and heart always felt cold in the last month, but I can tell such a difference. I also feel a lot more clear-headed (blood to the brain is a plus, I always say).
So all in all, I'm so happy with this decision. I think constant pacing was just what I needed. They say this won't increase my ejection fraction, but maybe this what they mean when they say you can start feeling a bit better even if your ejection fraction doesn't move. It's encouraging and making me very optimistic for this next year.
I hope you all had a great Thanksgiving! We were sad we couldn't be with family, but Christmas is just around the corner. See you then!
Love to you all,
Jana
snow
Ah, I feel like I've finally emerged from the post-surgery fog and can think straight enough to write. Nice!
The plan had been to get this surgery done on this last Monday. It wasn't an emergency, but having the pacing wire turned off was making me feel awful. Back to how been feeling all month-exhausted, dizzy, nauseas, lousy. So my doc wanted to correct this asap. But when Monday rolled around, we awoke to a lovely blanket of beautiful snow. Ooops.
As you might expect, Seattleites don't drive very well on snow (you may not know that they also don't drive that well in rain, but I digress). The hospital called and asked if we could postpone until Tuesday, as half of their staff couldn't come in. We said that was no big deal, and instead went in on Tuesday for the big day.
I was very familiar with the procedure by this point (this being my 3rd go round) so we whipped through the prep stuff and then I was wheeled off to try this again.
When I found out I was going to have this correction, I though they would cut a small hole in my 3 inch incision site and fix it from here. No, that would be too easy I guess. They cut the whole incision open again, and got to work.
As a note, my doc said when she saw the xray from my ER trip, she was pretty shocked. Not only had the pacing wire gone rougue and landed at my diaphragm, the entire casing of Sparky 2.0 had rotated 45 degrees. She had never seen one move out of place so badly.
As I learned that, I wondered if perhaps she wasn't at her most focused when she put in Sparky 2.0. Maybe she put on an episode of Grey's Anantomy for some inspiration, but got distracted by Dr. Yang's new career choice as a bartender who shakes more than just martinis. Who's to say? Or maybe when I got out of surgery last week and my shoulder felt just fine, I shouldn't have been whipping that arm around at da club. Hahahaha. Me at the club- hilarious. But I think I was pretty liberal with the arm moving, because it didn't really hurt. Oh well, who know's what happened, but I was ready to get it fixed.
The worst part of this surgery was because my blood pressure was so low (like around 75/30 instead of my normal 95/55), my doc couldn't use any sedation for the surgery. Just local anesthetic. The pain wasn't too terrible, but I felt every tug and heard way too much. The sounds of surgery are not comforting to the recipient of said surgery. I held it together and then started to freak out, but she got done right when I couldn't take it much more. Because everything was so messed up, the one hour procedure turned into 3 very tiring hours. When the doc finished, she had replaced the rougue wire, repositioned Sparky 2.0, and stiched him in.
Recovery was definately harder than last time. I felt like I'd been hit by a very small truck. But that's the way I felt after I got Sparky 1.0, so I took that as a good sign. I've spent this week resting a lot, but doing more every day. Today I almost feel normal! It's SO good.
Wanna hear one of the coolest things? Last week I told you that even with Sparky 2.0, I was feeling the pacing at least a few hours a day. Not painful, just uncomfortable and annoying. Well- no more!! Sparky paces me 100% of the time now, and I don't feel a thing! My doc thought that would happen and I'm so pleased.
Another awesome change is that my heart now feels warm! I didn't even realize that my chest and heart always felt cold in the last month, but I can tell such a difference. I also feel a lot more clear-headed (blood to the brain is a plus, I always say).
So all in all, I'm so happy with this decision. I think constant pacing was just what I needed. They say this won't increase my ejection fraction, but maybe this what they mean when they say you can start feeling a bit better even if your ejection fraction doesn't move. It's encouraging and making me very optimistic for this next year.
I hope you all had a great Thanksgiving! We were sad we couldn't be with family, but Christmas is just around the corner. See you then!
Love to you all,
Jana
snow
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