Hi All,
Hmm. I knew I'd be writing up a blog today, the one year anniversary of my diagnosis, but I thought it would be filled with musings, memories, and hopeful thoughts about my future. Well, I'll get to that, but first let me tell you about today's ER visit! (I think this day may be jinxed.)
I have been feeling not so hot the last few days. I've been super short of breath, my chest has been aching, and I've been way more tired than usual. Nick and I planned to call my doc today after cardiac rehab, but I didn't get a chance to do that.
I was tired today at rehab and had trouble breathing, but I made it through all my exercises. I started my cool down stretches, and within a few seconds, I felt like I was going to pass out. I sat down and talked with Dave, the rehab therapist. We just planned to wait it out and see how I felt in a few minutes. Then I got super dizzy, my head flopped over to the side and I told him I didn't feel right.
The nurse said my heart rate had just dropped to 40 beats per minute. That's the lowest I've ever been. A year ago, one of the reasons I was admitted to the hospital was because my heart rate was 140+. So the meds have done a great job, I just have to deal with the consequences now.
My heart rate dropped to 40 again, and that's when Dave and Cathy the nurse wheeled me right over to the ER. After lots of tests and 4 hours of monitoring, they released me. It seems my congestive heart failure is under control right now (excellent), and my labs looked good. The only snag is my heart rate is quite low. So I'm going to see my cardiologist in the next few days to decide what to do about that.
Really, this is a very good problem to have. It means my meds are doing a very good job of making my heart work as easily as possible. The negative is with my heart rate so low, I'll feel wimpier than ever. But, if my heart rate stays low, it may qualify me for Sparky 2.0, which could make me feel a whole lot better. : ) Sounds great to me! So we'll see, and I'll keep you posted. But I feel fine this evening, just going to catch up on some TV and curl up on the couch.
As for the one year anniversary of this whole thing- today it's not as overwhelming as it was earlier this week. Yeah, my whole life has changed (along with my dear husband's life, and my family and friends). But I do have hope about what is coming down the pike. This doesn't feel like such a death sentence, but just something I'll have to work around for a long time.
I was talking to my counselor this week about my feeling surrounding this milestone and they were pretty mixed.
I'm proud that I've made it through the weirdest year of my life.
I'm happy that Nick and I are just as in love and are stronger than we were a year ago.
I'm sad that our plans for kids have to be put off for the time being.
I'm surprised how fast it's gone.
I'm overwhelmed by the love and support my family and friends have shown me.
I'm mad that this disease forced me to make changes I didn't want to make (like quitting my job).
I'm tired of going to the doctor and hospital and knowing what they are talking about on the medical shows like Grey's Anatomy and House.
I'm in awe of the power of love that I've felt surrounding me again and again.
I'm grateful for all I've learned about myself this year (plenty of time for introspection does that to a girl).
And I'm excited to see what the next year will bring!
Through it all, you've all been just wonderful to me. I'm more grateful than I can say, and hope I can be as good of a friend to you as you've been to me. Thank you!! Every note, call, prayer, joke, gift, and hug has warmed my heart (: ) and made each day easier. You all are the bee's knees. : )
So that's all I've got for tonight. I've got a Rangers game to watch with Nick, so I'll have to let you go!
Adios!
Jana
It's been awhile! 10/23/2010
Hi All,
Wow, it's been a long time! October has really flown by...mostly with me in a plane literally flying by. I've been in Oklahoma visiting my folks, and then a week after that Nick and I hopped on a cruise to the Caribbean. Whew! I'm exhausted, but so happy to get a chance to do those fun things.
In short, Oklahoma was a blast. My family and I did lots of hanging out, watching movies, and poking around their new town (Ada, which they have declared America's best place to live. I guess we need to inform Time magazine or whoever keeps up with that list).
I felt pretty good most of the time. We did figure out that all the talking and laughing wears me out pretty quickly, so I'd make sure to have a nap in the afternoon. Not a bad gig. : ) One bit of excitement- we found a big snapping turtle in the driveway, so naturally, we poked at it with a stick until he bit the stick. Very exciting. Sad news though- a few hours later, we found 'ol Buck the turtle run over on the highway. Dang it.
But no weird heart episodes during the trip- it was just a matter of taking it slow.
Then Nick and I were off to the Caribbean! We flew into Puerto Rico and cruised from there with our dear friends Chuck and Errin. Before the trip, we got a wheelchair for me. Her name is Hot Wheels McGee. She's fantastic. Unfortunately, she does look like the wheelchairs every hospital, hotel, airport, and cruiseship owns, so we had to gussy her up. So we bought stickers from every port we visited and put them on the chair, like passport stamps. Brilliant? Yep, we thought so too.
The cruise was fantastic. There were only two days where we didn't get off the boat because it was too hot/I was too wimpy. But I did get to snorkel 3 (!!!) times. The best was in Dominica at a place called Champage beach. Dominica was (is?) a volcano, and when you snorkel, you see all these little tiny bubbles coming up from the sea floor, from air vents. It's AWESOME. There were tons of fish, and I have to say it beat Hawaii's snorkeling. SO cool.
So we've had a great month, but I'm glad to be home. I am pretty tired from all the fun and was ready to get back into a schedule this week. Cardiac rehab went pretty well this week, but I did have to stop early a few times because of some chest pain I've been having. I'd been kind of ignoring it while on the trips (oops) but they don't believe in ignoring anything at rehab. I go see my doc in about a week and we'll discuss it then. Unless it gets worse, then it's off to the ER I go. There's no risk of a heart attack because I don't have any artery blockage, but chest pain is never something they sneeze at.
Other than that, I've just been trying to adjust to life without working. It hasn't been hard with all the traveling, but now that that's done, I'm trying to find things to keep me busy. I've got a few things in the hopper...I'll keep you posted on how those go.
Well, that's all for now...I promise to do better at updating you on the shenanigans.
I love you all!
Jana
Real Mayo Update- 9/29/10
Hi All,
Sorry for such a long silence...I'm at my folks in Oklahoma and we've been having so much fun, I haven't had time to blog! And when I have had time, I've been too tired from all the fun. :)
So, a little more about my Mayo visit- it was really good. We didn't uncover anything wild; most of the test results were similar to my tests done in Seattle. But for some reason I really wanted to have everything done again just to make sure nothing was missed. So when the results came back very similar, it made me more comfortable trusting the docs in Seattle going forward. Maybe I'm not loyal, but this really is a business transaction for everyone, and I wanted to get "quotes" from other places, just to be sure. : )
Some of the tests I did were an echocardiogram, an exercise stress test, blood work, an overnight oxygen test, and chest x-rays.
Sorry for such a long silence...I'm at my folks in Oklahoma and we've been having so much fun, I haven't had time to blog! And when I have had time, I've been too tired from all the fun. :)
So, a little more about my Mayo visit- it was really good. We didn't uncover anything wild; most of the test results were similar to my tests done in Seattle. But for some reason I really wanted to have everything done again just to make sure nothing was missed. So when the results came back very similar, it made me more comfortable trusting the docs in Seattle going forward. Maybe I'm not loyal, but this really is a business transaction for everyone, and I wanted to get "quotes" from other places, just to be sure. : )
Some of the tests I did were an echocardiogram, an exercise stress test, blood work, an overnight oxygen test, and chest x-rays.
The echo showed my heart function at 24%. My test in Seattle a few weeks ago showed 23%. The margin for error on that test is 3-4%, so it's essentially the same, but I like that it went up a bit, instead of down!
The exercise test was pretty telling. I'd done this test before and it had shown that when I had to stop the test, it was because I reached my limit with my heart. That was after I'd done cardiac rehab for months and was in pretty good shape (considering). This test showed that when I had to stop, it wasn't my heart limiting me, but that I was deconditioned. That's a fancy way to say out of shape. I'm not surprised because after my sparky shock, I was too scared to work out on my own and have just gotten back into cardiac rehab. So that means some of this wimpyness I've been feeling should go away as I get back into rehab full swing. Excellent!! We thought that was excellent news. I was worried that the shock had done permanent damage and I was just wasn't going to be as strong, but that's not the case.
The only other test that showed something different was the overnight oxygen test. You clip this little monitor to your finger as you sleep and it monitors your oxygen levels. During the day, my oxygen levels are very good (97-100%). But during the night, my levels got to 79% or so. That's low. The doctor thinks I may have a bit of sleep apnea, which you can get from congestive heart failure. So I may be doing a sleep study in Seattle sometime soon. Treatment for sleep apnea has been shown to improve the ejection fraction a bit, so that could be really cool too. And I may get better sleep and need less under eye make up in the mornings. Win win!
After I finished all the tests, I met with the doc to review. He was a little cocky, but pretty nice. He did tell me that after I get to the therapeutic dose of my beta blockers, my heartrate may get too low and that would make me eligible for a biventricular pacemaker/defibrillator. Basically, Sparky 2.0. This device has two leads that go into the heart (Sparky just has one) and can improve the ejection fraction. So that's exciting too!
I did ask him about transplant and he said I'm just not sick enough yet. He told me heart transplants are for survival, not quality of life. He said you have to weigh the risks vs the benefits, and the risks just aren't worth it yet. Who knows what will happen in the future, but for now, he said to plan to live like this for some time. He said to focus on getting stronger, losing weight, reducing stress, and building up on my meds. That is the best recipe for me right now.
I do feel good about the visit, even though nothing groundbreaking happened. I'm ready to plug along slowly now, just taking things day by day. That's completely against my nature, but I've been broken, like a wild horse in a Disney movie. Well, maybe not broken, but I'm tamed a little.
So that's what happened at Mayo. One sidenote- we saw more REALLY old people in Cadillacs there than you can shake a stick at. And one old guy stole my dad's newspaper and another old guy stole our lunch table in the cafeteria. I guess sick old people don't have much to lose, so they live life on the edge. : )
And thanks to you all for your well wishes for the trip!
Love,
Jana
Short update- 9/22/10
Hi All!
We are about to head out of town for Oklahoma, but I wanted to write up a quick update about my Mayo trip.
We just wrapped up all my tests and my appointment with my doctor. The upshot is that things are about the same as I've heard, but I got encouraging news about how cardiac rehab and losing weight can help my heart get to it's potential. Meaning that my heart is weak, but is strong enough to take me doing more exercise and I should see see an increase in energy and stamina from that. Great news! I was under the impression that I was kind of at my max now, but that's not the case.
They did some additional tests that I'd never had before, and I feel like they were generally more comprehensive. The doc did recommend some prescription dosage changes, so I'll talk with my doc about those when I get home.
I'll write a much longer blog later (probably in a few days when we get to OK), but I just wanted to share the news. I do feel like I'm leaving here with a lot more peace and a renewed sense of optimism. So that was worth the trip alone! Plus getting to hang out with my family has been a blast too!
Thanks to everyone for their support! You guys are just the best. :)
Love,
Jana
We are about to head out of town for Oklahoma, but I wanted to write up a quick update about my Mayo trip.
We just wrapped up all my tests and my appointment with my doctor. The upshot is that things are about the same as I've heard, but I got encouraging news about how cardiac rehab and losing weight can help my heart get to it's potential. Meaning that my heart is weak, but is strong enough to take me doing more exercise and I should see see an increase in energy and stamina from that. Great news! I was under the impression that I was kind of at my max now, but that's not the case.
They did some additional tests that I'd never had before, and I feel like they were generally more comprehensive. The doc did recommend some prescription dosage changes, so I'll talk with my doc about those when I get home.
I'll write a much longer blog later (probably in a few days when we get to OK), but I just wanted to share the news. I do feel like I'm leaving here with a lot more peace and a renewed sense of optimism. So that was worth the trip alone! Plus getting to hang out with my family has been a blast too!
Thanks to everyone for their support! You guys are just the best. :)
Love,
Jana
On the menu? Mayo! 9/19/2010
Hi All!
I'm packing up to head off to the great state of Minnesota! I have my initial appointment at 7:15 on Tuesday morning, and then it will be at least 2 days of tests, consultations, and more tests. : ) I'm so happy I made the decision to do this. I honestly can say that I'll be fine if the docs say I'm doing the right things and all I can do is wait. At least I will have heard it from the best and I think I'll be able to move on from here.
I did do some research on the doc I'll be seeing, and I'm impressed. He went to the University of Bombay, and then came to the states where he did his fellowship at Harvard and then at Brown. Not too shabby! He specializes in heart failure as well as cardiac transplantation, so he should be able to give me guidance on transplant and all the other options.
I'm flying out tonight and will meet my parents and sister at the airport (they are driving up from Oklahoma). I'm so excited to see them! Rhetta (my 15 year old sister) and I have been planning how to squeeze in several mall trips, including the Mall of America (note: the "M" is capitalized. I checked their website). I'm not sure how tired I'll be from all the appointments, but I'm sure we'll be able to have a little fun too. : )
Then after we're done at Mayo, I'll drive back to Oklahoma with my family, to spend a week or so. I'll get to see my brother Skylar there- yay! Who knows what kind of fun we can dig up. We may need to try catfish noodleing. Are you familiar with this concept? You get in a creek, stick your hands under the creek banks, looking for catfish holes. When a catfish bites you, you pull out your arm with a catfish on it! Essentially, your arm is your fishing pole, and your fingers are the bait. Ok, maybe we'll just try to find someone else that's noodleing, film it, and put it on youtube. ; )
Nick is so bummed he couldn't come on this trip, but he's got a lot going on up here, and it's best that I have a loose schedule on this trip. I'm already missing him- he's in Lubbock this weekend, visiting good friends and his dad. They all went to the Texas v. Texas Tech game yesterday...and the Longhorns won! But Nick doesn't get home until tomorrow, and I leave tonight. : ( So I'll have to keep him posted via unlimited cell phone minutes!
Alright, I'm going to try to squeeze in a little nap before I need to finish up packing. I'll keep you all posted about the clinic visit!
Love you all,
Jana
I'm packing up to head off to the great state of Minnesota! I have my initial appointment at 7:15 on Tuesday morning, and then it will be at least 2 days of tests, consultations, and more tests. : ) I'm so happy I made the decision to do this. I honestly can say that I'll be fine if the docs say I'm doing the right things and all I can do is wait. At least I will have heard it from the best and I think I'll be able to move on from here.
I did do some research on the doc I'll be seeing, and I'm impressed. He went to the University of Bombay, and then came to the states where he did his fellowship at Harvard and then at Brown. Not too shabby! He specializes in heart failure as well as cardiac transplantation, so he should be able to give me guidance on transplant and all the other options.
I'm flying out tonight and will meet my parents and sister at the airport (they are driving up from Oklahoma). I'm so excited to see them! Rhetta (my 15 year old sister) and I have been planning how to squeeze in several mall trips, including the Mall of America (note: the "M" is capitalized. I checked their website). I'm not sure how tired I'll be from all the appointments, but I'm sure we'll be able to have a little fun too. : )
Then after we're done at Mayo, I'll drive back to Oklahoma with my family, to spend a week or so. I'll get to see my brother Skylar there- yay! Who knows what kind of fun we can dig up. We may need to try catfish noodleing. Are you familiar with this concept? You get in a creek, stick your hands under the creek banks, looking for catfish holes. When a catfish bites you, you pull out your arm with a catfish on it! Essentially, your arm is your fishing pole, and your fingers are the bait. Ok, maybe we'll just try to find someone else that's noodleing, film it, and put it on youtube. ; )
Nick is so bummed he couldn't come on this trip, but he's got a lot going on up here, and it's best that I have a loose schedule on this trip. I'm already missing him- he's in Lubbock this weekend, visiting good friends and his dad. They all went to the Texas v. Texas Tech game yesterday...and the Longhorns won! But Nick doesn't get home until tomorrow, and I leave tonight. : ( So I'll have to keep him posted via unlimited cell phone minutes!
Alright, I'm going to try to squeeze in a little nap before I need to finish up packing. I'll keep you all posted about the clinic visit!
Love you all,
Jana
No longer a grouch- 9/1532010
Hi All,
I'm happy to report I'm feeling much more, well, happy! I got out of my funk by yesterday morning, and am back to my normal self. It's amazing what a good night's sleep can do, huh?
Today was my last day at work. It didn't really feel like the last day-I'm not sure why. My co-workers are having a goodbye get together for me sometime soon, and I think that's when it will hit me. I'm sure I'll be crying a river, so I'll have to go pick up some waterproof mascara.
I'm pretty exhausted tonight. Again, confirming this is the right decision. I went to rehab this morning and then to work, and I'm going to write as quick as I can so I can go to bed! : )
Tomorrow is my first day of being work-free. I need to think of a cool way to say that. Employmently challenged? Mini-retirement? Independently wealthy? Wait, no....
We do have plenty to do though...I thought I would be bored stiff, but Nick and I have about 4 places to go tomorrow. Thank goodness for the handicap parking tag-that things gonna get a workout!
I talked to the Mayo Clinic today to confirm my appointments. They have me scheduled for a plethora of tests and they said I would be there for at least 2 days, maybe longer. I couldn't care less...I just want them to be thorough. I continue to get the best vibe from them. Everyone is so nice and completely has their act together. You know, mayo always was my favorite condiment- bahahaha! I've been trying to get a mayonnaise joke in here somewhere. Does it feel forced? : )
Ok, I'm gonna hit the hay. I just wanted to assure you all I'm out of my psychosis and can think clearly again. I'm so glad. :)
I'll keep you posted!
Love,
Jana
I'm happy to report I'm feeling much more, well, happy! I got out of my funk by yesterday morning, and am back to my normal self. It's amazing what a good night's sleep can do, huh?
Today was my last day at work. It didn't really feel like the last day-I'm not sure why. My co-workers are having a goodbye get together for me sometime soon, and I think that's when it will hit me. I'm sure I'll be crying a river, so I'll have to go pick up some waterproof mascara.
I'm pretty exhausted tonight. Again, confirming this is the right decision. I went to rehab this morning and then to work, and I'm going to write as quick as I can so I can go to bed! : )
Tomorrow is my first day of being work-free. I need to think of a cool way to say that. Employmently challenged? Mini-retirement? Independently wealthy? Wait, no....
We do have plenty to do though...I thought I would be bored stiff, but Nick and I have about 4 places to go tomorrow. Thank goodness for the handicap parking tag-that things gonna get a workout!
I talked to the Mayo Clinic today to confirm my appointments. They have me scheduled for a plethora of tests and they said I would be there for at least 2 days, maybe longer. I couldn't care less...I just want them to be thorough. I continue to get the best vibe from them. Everyone is so nice and completely has their act together. You know, mayo always was my favorite condiment- bahahaha! I've been trying to get a mayonnaise joke in here somewhere. Does it feel forced? : )
Ok, I'm gonna hit the hay. I just wanted to assure you all I'm out of my psychosis and can think clearly again. I'm so glad. :)
I'll keep you posted!
Love,
Jana
I am in no state to be writing a blog right now.
Jana- step away from the laptop, you are far too emotional, grouchy, sad, excited, bewildered, defeated and hungry to be to communicating with others right now. Stand by while I blow my nose, wash my hands, and get a snack.
*10 minutes later*
Ok, I feel like a different person. (by the way, the leftover porkchop I just ate from last night was delish).
So the whirlwind I'm in started with me giving notice at work yesterday. That was exhilarating at first- I really felt like I made a big decision and it was the right one. But as the night wore on, it really just hit me how much of a life change this will be. I'm used to having work be a major part of my life and how I define myself. And now, that's just gone. It's really weird. And now I have to find a new way to define myself. Hmm, I sound like a self help book on the clearance rack at Borders.
Next, I had my appointment with my cardiologist this morning. It was what I've come to expect- more of the same treatment plan. Good news though- my heart function had gone up to 23% (from 18% most recently). We also looked at my heart measurements over the last year and it shrunk from 7.2 centimeters to 6.8%. Not a lot, but it is certainly moving in the right direction. She said she thinks I am going to be one of the patients that improves very slowly, over a long period of time. That was hard to swallow, but I'm getting my head around it.
Honestly, I've been hoping that it will be transplant time, but it doesn't look that is in the cards anytime too soon. She told me getting on the transplant list would not happen the way I am now, as I would be listed as a status 2. No status 2's are getting hearts these days because there are so few hearts. Only status 1's are getting hearts (those that have to live in the hospital or are on 24/7 IV med drip). So there is no point of getting on the list- we just have to keep a close eye on me to see if my status needs to change. She did set my next appointment with her for November instead of the normal 4 months away. So I like that she's ready to keep close watch.
Also, this morning I got a call from the Mayo Clinic about the appointment I requested. I was super excited. PS- they get an A+ for customer service (and I am a TOUGH grader on customer service). Everyone I talked was sweet, helpful, and smart. They said they could see me as soon as Monday, but I set an appointment for the 21st, because I need to make travel arrangements.
I'm really excited, but I am bracing myself for the outcome to be the same as my doctor has said. I think one of the reasons I'm upset lately is because I see that "magic bullet" I keep hoping for slipping away. I think the next thing I need to do is be ready to start creating a life I want, knowing I have certain parameters I have to work within (and around). I'm not sure what that life looks like yet, but I'm not going to push myself to figure it out today. In case you haven't figured out, I like to know what's going on NOW, but sometimes I just have to be patient (blech. the "p" word" : ).
Anyway, I hope this note doesn't come off as ungrateful or too grouchy. I know I've had a lot of good news in the last few days, but for some reason, tonight I'm just overwhelmed and can't quite be happy about it yet. Tomorrow, I'll bet. : )
Thank you all for the sweet notes, thoughts, and prayers! It helps to know I have so many people cheering for me as I am on this crazy ride!
I love you all,
Jana
Jana- step away from the laptop, you are far too emotional, grouchy, sad, excited, bewildered, defeated and hungry to be to communicating with others right now. Stand by while I blow my nose, wash my hands, and get a snack.
*10 minutes later*
Ok, I feel like a different person. (by the way, the leftover porkchop I just ate from last night was delish).
So the whirlwind I'm in started with me giving notice at work yesterday. That was exhilarating at first- I really felt like I made a big decision and it was the right one. But as the night wore on, it really just hit me how much of a life change this will be. I'm used to having work be a major part of my life and how I define myself. And now, that's just gone. It's really weird. And now I have to find a new way to define myself. Hmm, I sound like a self help book on the clearance rack at Borders.
Next, I had my appointment with my cardiologist this morning. It was what I've come to expect- more of the same treatment plan. Good news though- my heart function had gone up to 23% (from 18% most recently). We also looked at my heart measurements over the last year and it shrunk from 7.2 centimeters to 6.8%. Not a lot, but it is certainly moving in the right direction. She said she thinks I am going to be one of the patients that improves very slowly, over a long period of time. That was hard to swallow, but I'm getting my head around it.
Honestly, I've been hoping that it will be transplant time, but it doesn't look that is in the cards anytime too soon. She told me getting on the transplant list would not happen the way I am now, as I would be listed as a status 2. No status 2's are getting hearts these days because there are so few hearts. Only status 1's are getting hearts (those that have to live in the hospital or are on 24/7 IV med drip). So there is no point of getting on the list- we just have to keep a close eye on me to see if my status needs to change. She did set my next appointment with her for November instead of the normal 4 months away. So I like that she's ready to keep close watch.
Also, this morning I got a call from the Mayo Clinic about the appointment I requested. I was super excited. PS- they get an A+ for customer service (and I am a TOUGH grader on customer service). Everyone I talked was sweet, helpful, and smart. They said they could see me as soon as Monday, but I set an appointment for the 21st, because I need to make travel arrangements.
I'm really excited, but I am bracing myself for the outcome to be the same as my doctor has said. I think one of the reasons I'm upset lately is because I see that "magic bullet" I keep hoping for slipping away. I think the next thing I need to do is be ready to start creating a life I want, knowing I have certain parameters I have to work within (and around). I'm not sure what that life looks like yet, but I'm not going to push myself to figure it out today. In case you haven't figured out, I like to know what's going on NOW, but sometimes I just have to be patient (blech. the "p" word" : ).
Anyway, I hope this note doesn't come off as ungrateful or too grouchy. I know I've had a lot of good news in the last few days, but for some reason, tonight I'm just overwhelmed and can't quite be happy about it yet. Tomorrow, I'll bet. : )
Thank you all for the sweet notes, thoughts, and prayers! It helps to know I have so many people cheering for me as I am on this crazy ride!
I love you all,
Jana
Subscribe to:
Posts (Atom)