Hi All!
It's a quiet Sunday morning and I thought I'd check in and share how the trip has gone so far. In a word- Snorktastic!! We snorkeled at Shark's Cove yesterday and I am enamored. We saw TONS of fish, the kind you only see in your dentist's aquarium. Angel fish, puffer fish, this fish that looked like a noodle, clown fish, and about 20 other kinds of rainbow colored fish. And we even saw a Humahumanukanukaapua'a (Hawaii's state fish. Duh).
And the snorkel trip was that much sweeter because the day before yesterday my snorkeling plans were dashed. We had gone to snorkel at Hanauma Bay, the place everyone says is a must see on Oahu. I wasn't feeling all that good as soon as we woke up that day, but I desperately wanted to go to the bay, so off we went. Nick and his parent's were wonderful to me- drove me right up to the entrance, stood in line to buy our tickets, and carried everything. But I still wasn't feeling right. By the time we got down to the beach (via trolley), I was feeling even worse.
My heart was pounding, I was dizzy, I could barely lift my arms. I sat under a tree for about an hour, hoping I would start to feel better so I could snorkel. But I didn't. I couldn't muster the energy to stand up, much less walk down to the water and snorkel. So I just watched and was so disappointed. It was a huge reminder of how my heart just can't make it sometimes, no matter how much determination I have. So we left, and went on a driving tour of the south east side of the island. We still a great time, but I was so exhausted, I could barely hold my head up. It was early to bed that night for sure!
So yesterday, when we decided to go to the North Shore to see the big waves, I was trying to decide to bring my swimsuit or not. And Nick said "hey, we've been planning in case bad stuff for so long, now let's plan in case good stuff happens!". I love him. :) So I brought my suit, and when we got to Shark's Cove, the water was calm and I felt really good, so snorkeling we went! And it was fantastic. : )
In other heart news, I did think I had a little Sparky event 3 days ago. It was late afternoon, and I was super tired. My heart started beating weird, and I almost passed out. I felt a hard thump in my chest and thought it was Sparky pacing my heart. We used my fancy Sparky transmitting machine to send a recording of what happened to my doc, and left her a message to call me back.
She called back to say that Sparky didn't pace me- I had an episode of atrial fibrillation. That's where the upper chambers of your heart beat really fast and out of rhythm. Though scary and uncomfortable, they are not dangerous. Yay for that! Boo for having more weird rhythms. I'll talk to my doc more about that when I get home.
So that's the heart highlights of the trip so far! We are having the most relaxing, lovely time here. The other day, we were going somewhere and I told Nick I wanted to drive. He was about to hand me the keys and then we both realized I'm not allowed to drive right now! We'd both completely forgotten. It's pretty nice to forget. : )
Love you all!
Jana
8/17/2010- Hawaii!!!
Hi All!
Just wanted to write up a quick note before we head off to HAWAII!!! We're going with Nick's parents , Gay and Pete, and we couldn't be more excited. A vacation is exactly what we need. Things have been a little stressful this year (I thought I'd downplay it today : ), so sitting on the beach, snorkeling, drinking cool beverages, and generally living "the island life" is what we want.
I got the sign-off on this trip from my doc about 2 weeks ago. She said as long as we were going to Oahu (we are) she was fine with it because there is a great heart hospital in Honolulu. So I wrote up a full list of my conditions, my meds, my doctors numbers, and the phone number and address for the Honolulu hospital, to carry with us just in case. It was kind of a depressing list, but whatev- we're going to Hawaii!!
We are renting a wheelchair there, so I can be pushed around in style when we go places with a lot of walking involved (Pearl Harbor, etc). And because of this, I got to pack cute shoes and not worry about packing sensible walking shoes. Ha!
We're going to go to Hanauma Bay to go snorkeling-oh I just can't wait. Nick remembers it from his childhood and the pictures I've seen look SNORK-TASTIC. : )
We'll go to the North Shore, drive around the island, hang out at lots of beaches (guarded by good ol' SPF 100 of course), and eat lots of yummy island food. I keep seeing rumors of shrimp trucks. Um, yes please. And sushi, oh the sushi!!
Well, it's about time to go, so Aloha! We'll be sure to post plenty of pictures.
XOXO
Jana
Just wanted to write up a quick note before we head off to HAWAII!!! We're going with Nick's parents , Gay and Pete, and we couldn't be more excited. A vacation is exactly what we need. Things have been a little stressful this year (I thought I'd downplay it today : ), so sitting on the beach, snorkeling, drinking cool beverages, and generally living "the island life" is what we want.
I got the sign-off on this trip from my doc about 2 weeks ago. She said as long as we were going to Oahu (we are) she was fine with it because there is a great heart hospital in Honolulu. So I wrote up a full list of my conditions, my meds, my doctors numbers, and the phone number and address for the Honolulu hospital, to carry with us just in case. It was kind of a depressing list, but whatev- we're going to Hawaii!!
We are renting a wheelchair there, so I can be pushed around in style when we go places with a lot of walking involved (Pearl Harbor, etc). And because of this, I got to pack cute shoes and not worry about packing sensible walking shoes. Ha!
We're going to go to Hanauma Bay to go snorkeling-oh I just can't wait. Nick remembers it from his childhood and the pictures I've seen look SNORK-TASTIC. : )
We'll go to the North Shore, drive around the island, hang out at lots of beaches (guarded by good ol' SPF 100 of course), and eat lots of yummy island food. I keep seeing rumors of shrimp trucks. Um, yes please. And sushi, oh the sushi!!
Well, it's about time to go, so Aloha! We'll be sure to post plenty of pictures.
XOXO
Jana
8/6/10-Wait and see?
Hi All,
So tired, so tired. Just got home from a long visit at UWMC and am pretty pooped. It was a fine visit and nothing too wild happened.
Labs were mostly fine, and we'll be doing a few tweaks here and there. We did talk about my upcoming visit with cardiologist in early September (I saw my nurse practitioner today). I told her that if the echocardiogram I have in late August doesn't show improvement, I want to start thinking about transplant. And she put on the brakes.
I know it's her job not to rush things and to give the meds time to work. But we are now past the window where the meds would have worked, if they could. She talked about how you don't want to transplant too early, because the transplant meds can be hard on your other organs (kidneys, liver, etc). I told her I was aware of that (I've done pretty extensive research already) but that at this point, I'm getting really close to my wit's end.
Honestly, I'd rather get a new heart, go on with my life, and do all we can to help my other organs as we go. Plus, new meds come out all the time, and my hope is better ones will come on the market. Also, the meds I'm on now have lousy long term effects to my lungs and eyes, and if I got a transplant I could get off those.
I told her I can't just keep waiting for years for the meds to possibly work. My life is dramatically on hold right now and I don't want to stay in a waiting pattern for years. It's not fair to me, to Nick, or to our families. We are literally stuck and can't move forward with the life we want until I get somewhat better.
That was about the time the tears started. I'm glad I let her see my frustration and sadness. The docs need to see that. So by the end of the conversation, my NP said that we can certainly have more discussions about transplant as we continue down this path.
I'm perfectly happy to wait until September when I talk to my doc. But if she's not ready to make an action plan at that point, I'll have to get another opinion. Because every time I'm in the hospital, the other docs I see say it's time to get seriously going on transplant evaluation, but then I see my doc as an outpatient and she's wanting to "wait and see". I do know she knows my history better than anyone, and has my best interest at heart. My NP told me today that I'm at the forefront of the entire department's minds because I'm having these new symptoms (Sparky firing, etc) and they are all trying to do the best thing they can for me. I actually was stopped by 2 cardiologists, an electrophysiologist, and 2 nurses as I walked down the hall, just checking on me and saying hi.
The more I think about it, the more I think my NP may have just been giving me "the company line" about transplants, but maybe she's in the dark about what my doc and her counterparts are thinking. As I've learned from reading lots about transplants, it's wait wait wait wait then all of a sudden it's go go go go!
One other thing that happened today is my doc signed the paperwork for a disabled parking permit. I've put this off for a long time, thinking that I can make it, or having Nick drop me off a the door. But I've decided to put aside my pride and just have it for those times parking is just too far to walk. It really can make the difference me barely making it in the building and then spending the rest of the night paying the price, or feeling fine.
So that's all I've got for right now. I'll keep you all posted on any further developments, but as of right now we're just gonna "wait and see". : )
Love,
Jana
So tired, so tired. Just got home from a long visit at UWMC and am pretty pooped. It was a fine visit and nothing too wild happened.
Labs were mostly fine, and we'll be doing a few tweaks here and there. We did talk about my upcoming visit with cardiologist in early September (I saw my nurse practitioner today). I told her that if the echocardiogram I have in late August doesn't show improvement, I want to start thinking about transplant. And she put on the brakes.
I know it's her job not to rush things and to give the meds time to work. But we are now past the window where the meds would have worked, if they could. She talked about how you don't want to transplant too early, because the transplant meds can be hard on your other organs (kidneys, liver, etc). I told her I was aware of that (I've done pretty extensive research already) but that at this point, I'm getting really close to my wit's end.
Honestly, I'd rather get a new heart, go on with my life, and do all we can to help my other organs as we go. Plus, new meds come out all the time, and my hope is better ones will come on the market. Also, the meds I'm on now have lousy long term effects to my lungs and eyes, and if I got a transplant I could get off those.
I told her I can't just keep waiting for years for the meds to possibly work. My life is dramatically on hold right now and I don't want to stay in a waiting pattern for years. It's not fair to me, to Nick, or to our families. We are literally stuck and can't move forward with the life we want until I get somewhat better.
That was about the time the tears started. I'm glad I let her see my frustration and sadness. The docs need to see that. So by the end of the conversation, my NP said that we can certainly have more discussions about transplant as we continue down this path.
I'm perfectly happy to wait until September when I talk to my doc. But if she's not ready to make an action plan at that point, I'll have to get another opinion. Because every time I'm in the hospital, the other docs I see say it's time to get seriously going on transplant evaluation, but then I see my doc as an outpatient and she's wanting to "wait and see". I do know she knows my history better than anyone, and has my best interest at heart. My NP told me today that I'm at the forefront of the entire department's minds because I'm having these new symptoms (Sparky firing, etc) and they are all trying to do the best thing they can for me. I actually was stopped by 2 cardiologists, an electrophysiologist, and 2 nurses as I walked down the hall, just checking on me and saying hi.
The more I think about it, the more I think my NP may have just been giving me "the company line" about transplants, but maybe she's in the dark about what my doc and her counterparts are thinking. As I've learned from reading lots about transplants, it's wait wait wait wait then all of a sudden it's go go go go!
One other thing that happened today is my doc signed the paperwork for a disabled parking permit. I've put this off for a long time, thinking that I can make it, or having Nick drop me off a the door. But I've decided to put aside my pride and just have it for those times parking is just too far to walk. It really can make the difference me barely making it in the building and then spending the rest of the night paying the price, or feeling fine.
So that's all I've got for right now. I'll keep you all posted on any further developments, but as of right now we're just gonna "wait and see". : )
Love,
Jana
7/29/10-Back Again
Hi All,
Let's hope I'm not making a habit of this, but I'm back at good ol' UWMC for a few days. I'm in a room I've stayed in before, so this does feel pretty familiar.
Let's start with the reason I'm here...
So you'll remember last Tuesday I had my shocking Sparky adventure which was a result of an episode of ventricular tachycardia (VT). Well, wouldn't you know it, this Tuesday, I had VT again!
I had just gotten to the office about 5 minutes before and was talking to my friend Stacey in my cubicle. All of a sudden, I got super dizzy and felt my heart speed up incredibly fast. I told her "it's happening, it's happening". I could still hear and talk, but I coudn't see a thing. After a few seconds, I felt three firm "thumps" in my chest. That was Sparky using his pacemaker function to override the bad rhythm and get me back to normal. After a few seconds, I could see again, and my heart started slowing down.
Stacey looked at me- wide eyed- and asked what she should do. I told her if I black out to call 911, but by that point, I was pretty sure the episode was over. She later told me she'd never seen me be so serious and direct with instructions. :) I was lucky that Sparky paced me out of the VT before I got a shock. And I was lucky Stacey was there to help if anything went astray! She was so calm and composed, probably not the reaction she would get from me if the situation was reversed. : ) Thanks Stacey!
I called Nick to come get me after my grueling 22 minute workday, and when he got there, Stacey and Lindsay escorted me to my car. I felt like a celebrity with an entourage (or a prisoner being transfer to another facility. One of the two).
When I talked to my doc's nurse, she said I should come in the next day (Wednesday) to have Sparky interrogated and to get a check up. So on Wednesday, we head to UWMC and after the nurse runs the interrogation, the doc comes in and tell's me we need to start me on a new drug, amioderone. It's an anti-arrhythmia drug to help prevent more VT. The downside is it can have lots of side effects-the most common being nausea. Some other long term effects concern the lungs and eyes. So the docs will keep a close eye on all my blood work to make sure those effects aren't kicking in. She also said I had to be admitted for a few days to make sure I could tolerate the drug-so here I am!
I've talked to the docs this morning and everything is going fine with the new drug-I'm not even feeling sick to my stomach. They also decided to add 2 more drugs to my list, so I think that's a grand total of 9 now. Good grief.
While I was talking to the docs this morning, we had a bit of a heart to heart (heh) about the current state of affairs. They are very glad to hear my heart failure symptoms are pretty under control, but my ejection fraction of 18 is lousy. The meds are not improving my heart the way we'd all hoped they would.
I was very upfront as I told the docs plainly that I was ready for something to happen. While I'm thrilled I'm not constantly in the hospital for congestive heart failure symptoms, my life is still not where I want it to be. I can barely work at all, I can't drive, I can't walk for normal distances, and most importantly, Nick and I can't even think of starting a family while I'm like this. Even if we wanted to adopt, I can't chase a baby around the way I am now, and most adoption agencies won't allow a very sick person to apply. So I'm ready to do what it takes to get some semblance of a normal life back.
The doctor agreed that we need to start actively pursuing heart transplant. That doesn't mean I'm getting listed right away, but he is ordering the remaining transplant evaluation testing be done. I may do some of it while I'm here today or tomorrow, or some of it may be done as an outpatient.
His thought was to see what these new drugs do for me for a month or two and then have another discussion in early September. That timeline sounds fine with me. I'm just very glad to have the docs ready to make some changes. I felt like we were beating a dead horse and I was sick of it.
So that's the story for now...I'll keep you posted! The docs expect to let me out of here around 3pm tomorrow so I'll get to spend the weekend at home! Good news.
Thank you all for the sweet notes and messages. You guys are the best!
Love to you all,
Jana
Let's hope I'm not making a habit of this, but I'm back at good ol' UWMC for a few days. I'm in a room I've stayed in before, so this does feel pretty familiar.
Let's start with the reason I'm here...
So you'll remember last Tuesday I had my shocking Sparky adventure which was a result of an episode of ventricular tachycardia (VT). Well, wouldn't you know it, this Tuesday, I had VT again!
I had just gotten to the office about 5 minutes before and was talking to my friend Stacey in my cubicle. All of a sudden, I got super dizzy and felt my heart speed up incredibly fast. I told her "it's happening, it's happening". I could still hear and talk, but I coudn't see a thing. After a few seconds, I felt three firm "thumps" in my chest. That was Sparky using his pacemaker function to override the bad rhythm and get me back to normal. After a few seconds, I could see again, and my heart started slowing down.
Stacey looked at me- wide eyed- and asked what she should do. I told her if I black out to call 911, but by that point, I was pretty sure the episode was over. She later told me she'd never seen me be so serious and direct with instructions. :) I was lucky that Sparky paced me out of the VT before I got a shock. And I was lucky Stacey was there to help if anything went astray! She was so calm and composed, probably not the reaction she would get from me if the situation was reversed. : ) Thanks Stacey!
I called Nick to come get me after my grueling 22 minute workday, and when he got there, Stacey and Lindsay escorted me to my car. I felt like a celebrity with an entourage (or a prisoner being transfer to another facility. One of the two).
When I talked to my doc's nurse, she said I should come in the next day (Wednesday) to have Sparky interrogated and to get a check up. So on Wednesday, we head to UWMC and after the nurse runs the interrogation, the doc comes in and tell's me we need to start me on a new drug, amioderone. It's an anti-arrhythmia drug to help prevent more VT. The downside is it can have lots of side effects-the most common being nausea. Some other long term effects concern the lungs and eyes. So the docs will keep a close eye on all my blood work to make sure those effects aren't kicking in. She also said I had to be admitted for a few days to make sure I could tolerate the drug-so here I am!
I've talked to the docs this morning and everything is going fine with the new drug-I'm not even feeling sick to my stomach. They also decided to add 2 more drugs to my list, so I think that's a grand total of 9 now. Good grief.
While I was talking to the docs this morning, we had a bit of a heart to heart (heh) about the current state of affairs. They are very glad to hear my heart failure symptoms are pretty under control, but my ejection fraction of 18 is lousy. The meds are not improving my heart the way we'd all hoped they would.
I was very upfront as I told the docs plainly that I was ready for something to happen. While I'm thrilled I'm not constantly in the hospital for congestive heart failure symptoms, my life is still not where I want it to be. I can barely work at all, I can't drive, I can't walk for normal distances, and most importantly, Nick and I can't even think of starting a family while I'm like this. Even if we wanted to adopt, I can't chase a baby around the way I am now, and most adoption agencies won't allow a very sick person to apply. So I'm ready to do what it takes to get some semblance of a normal life back.
The doctor agreed that we need to start actively pursuing heart transplant. That doesn't mean I'm getting listed right away, but he is ordering the remaining transplant evaluation testing be done. I may do some of it while I'm here today or tomorrow, or some of it may be done as an outpatient.
His thought was to see what these new drugs do for me for a month or two and then have another discussion in early September. That timeline sounds fine with me. I'm just very glad to have the docs ready to make some changes. I felt like we were beating a dead horse and I was sick of it.
So that's the story for now...I'll keep you posted! The docs expect to let me out of here around 3pm tomorrow so I'll get to spend the weekend at home! Good news.
Thank you all for the sweet notes and messages. You guys are the best!
Love to you all,
Jana
7/22/10- It was shocking alright!
I had it. My very first Sparky shock. It was pretty stinking shocking! But not for the reason you might think. Let me share the story...
Tuesday, I decided to stop being a lazy bum and go back to the YMCA (I hadn't been in 2 1/2 weeks). I did my 12 minutes on the treadmill fine, although I was feeling some weird heartbeats, so I slowed down a little. Then I went to the Precor stationary bike machine in another room and got going. There was one other person in there, but she left right as I was getting on the bike. After about 3 minutes, I decided I was hot, so I turned on the fan at the other end of the room, and then I got back on the bike. Then it happened.
Tuesday, I decided to stop being a lazy bum and go back to the YMCA (I hadn't been in 2 1/2 weeks). I did my 12 minutes on the treadmill fine, although I was feeling some weird heartbeats, so I slowed down a little. Then I went to the Precor stationary bike machine in another room and got going. There was one other person in there, but she left right as I was getting on the bike. After about 3 minutes, I decided I was hot, so I turned on the fan at the other end of the room, and then I got back on the bike. Then it happened.
All of a sudden, I felt crazy dizzy and I started to breathe deeply to clear my head. Next thing I know, I woke up on the floor.
When I woke up, I felt like my heart was going to explode and I didn't know where I was. Then I realized the huge bike had fallen on me and the full weight of the top of the machine was on my chest (right on top of Sparky, no less).
I screamed for help 4 or 5 times, and then people started pouring into the room. I told the YMCA people that I had a heart condition and that I blacked out. The next few minutes are kind of fuzzy, but the ambulance got there in about 2 minutes (nicely done!), and I had paramedics asking me a million questions, strapping me to a backboard, putting me on a stretcher, and getting me in the ambulance within just a few minutes.
Let me interject here with what we've determined actually happened. It took a few days to patch this together, using the paramedics notes of what they saw, the YMCA employees stories, what I remember, and the information we got from Sparky's readout. It seems that while I was on the bike, my heart went into ventricular tachycardia (VT). That's where the top and bottom chambers of heart beat out of sync and go really fast. It doesn't always cause sudden cardiac death, but it's pretty common that it will, so that's the reason I have Sparky.
My heartrate got up to 250 beats per minute (I'm normally at 80 these days). Because my heart was freaking out, my brain didn't get enough blood, and I blacked out within 2-3 seconds of the VT episode. Then I fell off the bike, but since my feet were still in the foot straps, I pulled the bike over on top of me, slamming the handlebars right into my chest (mostly on Sparky. What are the odds?). Then while I was on the ground, Sparky shocks me to get my heart out of that dangerous VT episode. And then I wake up. I think I was out for about 3 minutes, because my iPod had gone past one whole song from the time I blacked out to the time I woke up. (fyi, the song I missed was 50 Cent's "In Da Club" which I'm bummed about. "...come give me a hug.". ; ).
All in all, it was a lousy 3 minutes.
When I got to the ER, the docs actually didn't think I'd had a shock. But when they downloaded Sparky's information several hours later (they call it interrogating him. Hee hee. I imagine a spotlight and a bad cop with a cigar screaming at Sparky) they found the VT and that ol' Sparks had done his job. Even after a 200 lb bike fell on him. Sparky, you've earned your keep. Also, note that I do recognize the irony that I was hit by a stationary bike. ; )
I stayed in the ER for about 7 hours while they checked me out and did tests. I had to have a CT scan of my brain because I had a huge goose egg on my head from falling (see the picture above). Because I'm on blood thinners, they had to make sure I didn't have any bleeding in the brain. I didn't (yay!). I also had (have) lots of very sore spots and I'm going to have some cool bruises.
So I was admitted to the hospital from the ER because they wanted to figure out why I had the VT. I really wanted to know too, because blacking out like that was the scariest thing that has ever happened to me, and I'm not excited about it happening again. The lousy part is that since my heart function is so lame, the docs fully expect me to black out if I have any VT at all. Bah.
They did tons of tests and ultimately decided that it could have been a slight potassium deficiency. So I'm on potassium now, as well as more beta blockers, because those can hep stop arrhythmias like VT.
While I was in the hospital, they also did another ultrasound of my heart to see how's it functioning. Bummer news-it hasn't improved over the last 6 months. It's actually gone from 22% to 18%. Grr. The goods news is the docs say is not enough of a change to make a difference in how I feel. The bad news is they really hoped that 6 months of high doses of my meds would have caused that number to jump a lot. So we may be having more serious conversations again soon. I'll keep you posted on that.
They released me yesterday, with scripts for potassium, more beta blockers, and then they told me I can't drive for 6 months. And that's when my jaw dropped. Evidentally, when you black out and have an ICD shock, others don't want you on the road with them. I'm being a smarty pants, but honestly, I completely agree. If I had been driving when this happened, I could have killed myself and who knows how many others. I didn't have enough time from the time I started feeling dizzy until I blacked out to pull over. In the past, I had been told I should have plenty of time before I passed out, but it turns out with my lousy heart function, I black out sooner than most people would in the same situation. Argh. So I will be bumming rides from people a lot more often...friends- beware!
So that is probably the hardest thing to swallow of all this. I like to be free as a bird, but I'll be a little less free for awhile. Nick was so sweet to talk me off the ledge when I was freaking out about not being able to drive. He's promised he'll take me anywhere I want to go, and he'll even drop me off so I can do stuff alone like I like (go to the movies, shopping, etc). It's not forever, and I'll be fine. I'll just have to get used to it I'm sure. And I'll get a cab service number on speed dial. :)
That's all the news I've got for now...I'll keep you all posted on any future developements!
Thanks for all the sweet messages I got while in the hospital. That's my favorite part of being in there! : )
I love you all!
Jana
7/10/2010- Oh the heat!!
Texas friends- beware. I'm going to sound like a weenie of epic proportions to you. But this heat in Seattle is killing me!!!
We've had the most mild spring-too cool by Seattlite's standards. And I've loved every dreary, 62 degree day. However, a few days ago, we hit "Summer". All 97 degrees of it. And here's the problemo-No one in Seattle has air conditioning! That's a brutal combination.
Well, Nick was a genius and got us an air conditioner for our bedroom, but with that heat, it was still almost eighty in the dead of night.
And that's when the full heat effects took their toll on my poor little (well big) heart.
I just hadn't been feeling right all day (I was dizzy, and overheated, and weak). So as I tried to go to sleep, those things just got worse. I started gasping, feeling pukey, and if I even touched my stomach lightly, the pain was really bad. These are classic heart failure symptoms, all due to water retention around my heart and other organs. Blast.
We put a cold towel on my forehead and I ended up taking a lasix (diuretic) at 2:30am and peed all night. So it was a lousy night's sleep, but by morning I felt quite a bit better. The scary thing was I hadn't felt that bad with heart failure stuff since right before I was diagnosed. So all the bad memories came rushing back and for a little while, we thought we were going to have to head off to the ER. But we made it through the night!
I went to the cardiologist the next day (yesterday) for a regular check in. She ran all my labs and said they were a little high, but not terrible. The lasix did the trick!! Her main advice was to be extra cautious in the heat, stay hydrated, take extra lasix if needed, and don't push it. I'm not fabulous at "not pushing it", but I'll do my best.
Other than stumbling through the heat like a zombie, things have been good! We're headed to a party tonight at our friend Jillian's house- and she has a pool!!!!! I knew I was her friend for a reason. ; )
Oh, for a quick "what's the big picture look like" update- We are really close to having me on the full doses of my heart meds (it's taken 8 months to get there). I should be fully dosed up by August and then they are going to do another ultrasound of my heart to see how my heart is functioning with those meds. At last ultrasound, it was pumping at 20-25%. Normal is 70%. So I can't wait to see what it is!! My guess is 35%. 50% would be just dreamy though. :)
After that test, I'll meet with my doc and we'll determine the next course of treatment (maybe some new drugs). If the function isn't improving much, we will probably have to start kicking around the idea of a transplant sooner than later, but I have a feeling that won't be the case. PMA (Positive Mental Attitude)!
Anyway, I hope you all are having a great summer! Texas friends- come up and see us to cool off! Next week is supposed be lovely and in the 70s!
Love you all!
Jana
We've had the most mild spring-too cool by Seattlite's standards. And I've loved every dreary, 62 degree day. However, a few days ago, we hit "Summer". All 97 degrees of it. And here's the problemo-No one in Seattle has air conditioning! That's a brutal combination.
Well, Nick was a genius and got us an air conditioner for our bedroom, but with that heat, it was still almost eighty in the dead of night.
And that's when the full heat effects took their toll on my poor little (well big) heart.
I just hadn't been feeling right all day (I was dizzy, and overheated, and weak). So as I tried to go to sleep, those things just got worse. I started gasping, feeling pukey, and if I even touched my stomach lightly, the pain was really bad. These are classic heart failure symptoms, all due to water retention around my heart and other organs. Blast.
We put a cold towel on my forehead and I ended up taking a lasix (diuretic) at 2:30am and peed all night. So it was a lousy night's sleep, but by morning I felt quite a bit better. The scary thing was I hadn't felt that bad with heart failure stuff since right before I was diagnosed. So all the bad memories came rushing back and for a little while, we thought we were going to have to head off to the ER. But we made it through the night!
I went to the cardiologist the next day (yesterday) for a regular check in. She ran all my labs and said they were a little high, but not terrible. The lasix did the trick!! Her main advice was to be extra cautious in the heat, stay hydrated, take extra lasix if needed, and don't push it. I'm not fabulous at "not pushing it", but I'll do my best.
Other than stumbling through the heat like a zombie, things have been good! We're headed to a party tonight at our friend Jillian's house- and she has a pool!!!!! I knew I was her friend for a reason. ; )
Oh, for a quick "what's the big picture look like" update- We are really close to having me on the full doses of my heart meds (it's taken 8 months to get there). I should be fully dosed up by August and then they are going to do another ultrasound of my heart to see how my heart is functioning with those meds. At last ultrasound, it was pumping at 20-25%. Normal is 70%. So I can't wait to see what it is!! My guess is 35%. 50% would be just dreamy though. :)
After that test, I'll meet with my doc and we'll determine the next course of treatment (maybe some new drugs). If the function isn't improving much, we will probably have to start kicking around the idea of a transplant sooner than later, but I have a feeling that won't be the case. PMA (Positive Mental Attitude)!
Anyway, I hope you all are having a great summer! Texas friends- come up and see us to cool off! Next week is supposed be lovely and in the 70s!
Love you all!
Jana
6/6/2010- Taking a break
Hi All!
I was just sitting on my couch, watching Oprah, and thought I'd drop you all a line. (Not that Oprah was boring. Far from it- she had on Kristie Alley who is consistently a train wreck. Good tv, for sure)
Not too much exciting news around here, which is superb on the health front. I'm trying to kick a brutal cold that has NOT caused many heart failure symptoms this time (boo-yah!). Colds just like this landed me in the hospital twice in the winter, so this is a big improvement!
Nick's sister's (Mandy and Kelly) and their families came up from Austin to see us over Memorial Day. Oh, the fun we had! We went to the aquarium, which rocked. You can pet starfish in a big tank. Very fun for us, less fun for the starfish I'm sure.
Addison, our 21 month old niece, had a fabulous time and was as cute as button (even cuter than BoBo, but don't tell Nick I said that). She actually loved BoBo, but her love was unrequited. That cat hissed, snarled, and was generally a jerk to her. And Addie laughed and laughed. She hasn't quite learned to read her audience yet. : )
So as summer starts, I'm excited to see what the season will bring. With this whole heart thing, I really felt like I missed last fall, this winter, and a good chunk of spring. So it's pretty important to me to really feel like I can put my "I was here" stamp on this summer. : ) I just want to spend lots of time outside in the lovely city, enjoy the parks, hang out with our fun friends, and relax. Mmm, sounds good.
Another thing I've been thinking about is taking a break from all this heart stuff. You know, just not have this condition for awhile. Ok, I guess that won't work, but I do want to stop giving it so much energy. For the past few months, I've been on a mission- learning all the details I can, talking to doctors, and researching online. Well I'm tired of it. I'm just taking a break from worrying about it all.
I'll keep taking my meds (duh), going to rehab, and eating pretty well, but I'm not on a mission anymore. I don't think it will hurt anything, and I would love to put that energy somewhere else. So that's the plan. I'll keep you guys updated on how it goes. And I'll do that with a nice glass of iced tea in my hand and my feet propped up!
Adios!
Jana
I was just sitting on my couch, watching Oprah, and thought I'd drop you all a line. (Not that Oprah was boring. Far from it- she had on Kristie Alley who is consistently a train wreck. Good tv, for sure)
Not too much exciting news around here, which is superb on the health front. I'm trying to kick a brutal cold that has NOT caused many heart failure symptoms this time (boo-yah!). Colds just like this landed me in the hospital twice in the winter, so this is a big improvement!
Nick's sister's (Mandy and Kelly) and their families came up from Austin to see us over Memorial Day. Oh, the fun we had! We went to the aquarium, which rocked. You can pet starfish in a big tank. Very fun for us, less fun for the starfish I'm sure.
Addison, our 21 month old niece, had a fabulous time and was as cute as button (even cuter than BoBo, but don't tell Nick I said that). She actually loved BoBo, but her love was unrequited. That cat hissed, snarled, and was generally a jerk to her. And Addie laughed and laughed. She hasn't quite learned to read her audience yet. : )
So as summer starts, I'm excited to see what the season will bring. With this whole heart thing, I really felt like I missed last fall, this winter, and a good chunk of spring. So it's pretty important to me to really feel like I can put my "I was here" stamp on this summer. : ) I just want to spend lots of time outside in the lovely city, enjoy the parks, hang out with our fun friends, and relax. Mmm, sounds good.
Another thing I've been thinking about is taking a break from all this heart stuff. You know, just not have this condition for awhile. Ok, I guess that won't work, but I do want to stop giving it so much energy. For the past few months, I've been on a mission- learning all the details I can, talking to doctors, and researching online. Well I'm tired of it. I'm just taking a break from worrying about it all.
I'll keep taking my meds (duh), going to rehab, and eating pretty well, but I'm not on a mission anymore. I don't think it will hurt anything, and I would love to put that energy somewhere else. So that's the plan. I'll keep you guys updated on how it goes. And I'll do that with a nice glass of iced tea in my hand and my feet propped up!
Adios!
Jana
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