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
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
5/21/10
What. A. Day.
I am completely drained, exhausted, part of me wants to cry, and part of me is completely at peace. Most of the day the doctor's office will do that to you.
Today was a big day I'd been looking forward to. Today was the day I was going to get to meet with my cardiologist who I haven't seen in 4 months or so. I usually see her nurse practioner, but I asked to see the doc because I had been feeling so lost and needed to get the state of the union from her.
Nick warned me not to get my hopes up too high for the appointment, but in typical Jana style, I thought of nothing else for the past few weeks, wrote up an extenisive list of questions, and read every article I could find online about my condition. I'm nothing if not thorough. : )
Well, to me, the appointment was a big fat bummer. Nick saw it very differently. The main thing I was hoping to get was an action plan of something different we could do that could really improve my energy and quality of life. Maybe get Sparky another wire to help the pace of my heart. Maybe try a new drug. Maybe some fancy new treatment. No. She said all she wanted to do was keep ticking up my drugs. And I started crying in her office. I just felt so stuck.
She did have quite a bit of encouraging news to tell us, but I was in no mood to hear it. She said the results of the bike test I did a month ago were actually pretty good (the nurse practioner read the results wrong) so my heart can withstand excercise pretty well, so keep up the cardiac rehab. She also said my heart has shrunk a tiny bit (about 4 millimeters). That is a miniscule amount, but it's not getting bigger. And that transplant in the next few years seems pretty unlikely. Which is certianly good.
All in all, it was an ok visit, but I told Nick I think the problem is I almost feel like she's being too positive about the whole thing. To me, she's acting like this condition is not that big of a deal. Nick sees her as being optimistic and not dwelling on the bad stuff. I'm just not sure if I like her approach. So I'm kicking around the idea of getting a second opinion. Not that I think someone else will say something different, I just wonder if I'll like the way someone else says it. I haven't decided yet, but I'm positive I need to sleep on the idea and not making any decisions when I'm this loopy.
So the second doctor's appointment...I don't think I've told most of you this yet, but Nick and I decided to go see a Perinatologist (high risk obstetrician). We aren't ready to have kids yet, but we thought it would be a good idea to talk to someone that handles cases like mine, just to get the lay of the land.
It was to our good fortune that I was referred to one of the best perinatologists on the west coast. He actually invented a test that looks at the aorta and can tell how the heart will respond to pregnancy. He routinely has 2-3 people with cardiomyopathy in his care at any time. He's kind of a big deal. : )
He was straight-up awesome. He was super blunt, but also very caring and he was acutally willing to give me options and tell me what our course of action would be in each scenario. He gave me the facts and I will love him forever for that. : )
He starts off by saying that he virtually never tells anyone not to get pregnant. He likes a challenge, he likes to help people have their families, he's not scared of much. He said I was one of about 4 people he has told to not get pregnant right now in his 30 year career. My heart's pumping capacity is simply too weak and the likelihood that I would die during pregnancy is almost certain.
But he then went on to say we need to wait about a year to 18 months to see how much my heart has improved. He wants my ejection fraction to get to 50% (it's 20% right now). If we can get there, we should be able to have a baby. I would be monitored incredibly closely (like going to the doc 2x month at first, and then going to 2-3x week near the end). I may end up on bed rest. And it's still risky, but he said people have babies all the time like that. This is the best case scenario.
The next scenario is if my heart gets worse within that time. And if it does, then it's transplant time. And he said having a baby a year after a transplant is no problem at all. Almost as low risk as any other pregnancy.
Then there's the scenario where my heart improves some (say to 35%) but I can't get over the 50% hump. That's the hardest scenario. We could weigh the risks of pregnancy at that point, but it would be a very serious conversation. We could also wait and see if my heart got better in the years that followed. As much as we don't want to wait for years, the doc said we could wait 5-10 years if we have to. I just hope that's not the case. And then there's always adoption. We'll have a family no matter what. It's just a matter of how we get there.
We talked about drug changes, and tests he would do when I got pregnant and it was all very good information. He also talked about how much weight loss can help, so that is our next plan. It is one of the only things I can control in this whole mess, so that's where I'm going to focus my attention for now. It's got to be slow, but I know we can do it. He wants to see us again in a year to see where my heart's at, and we'll reasses then. And he said to take this year to relax, enjoy each other, work on getting better and don't worry about this stuff. We'll handle whatever the answer is when the time comes.
All in all, I was SO relieved to talk to this doctor today. It was just what I needed. I felt understood, encouraged, excited, happy, informed and hopeful. That's exactly what I needed and it makes for a great start to the weekend. Nick was super happy with the appointment too and I think we can let some worry go for now. I may still make the second opinion appointment, but maybe not. Maybe I just need to trust the process and give the medicine's time to do their job. Patience is not my strong suit, but this diagnosis is turning out to be a crash course in patience. So I'll try.
I'm going to pass out on the couch now.
I love you all!
Jana
ps, did anyone see Grey's Anatomy last night?? Whew, I had to pause it 3 times just to let my heart calm down. McDreamy!! No!!!!
I am completely drained, exhausted, part of me wants to cry, and part of me is completely at peace. Most of the day the doctor's office will do that to you.
Today was a big day I'd been looking forward to. Today was the day I was going to get to meet with my cardiologist who I haven't seen in 4 months or so. I usually see her nurse practioner, but I asked to see the doc because I had been feeling so lost and needed to get the state of the union from her.
Nick warned me not to get my hopes up too high for the appointment, but in typical Jana style, I thought of nothing else for the past few weeks, wrote up an extenisive list of questions, and read every article I could find online about my condition. I'm nothing if not thorough. : )
Well, to me, the appointment was a big fat bummer. Nick saw it very differently. The main thing I was hoping to get was an action plan of something different we could do that could really improve my energy and quality of life. Maybe get Sparky another wire to help the pace of my heart. Maybe try a new drug. Maybe some fancy new treatment. No. She said all she wanted to do was keep ticking up my drugs. And I started crying in her office. I just felt so stuck.
She did have quite a bit of encouraging news to tell us, but I was in no mood to hear it. She said the results of the bike test I did a month ago were actually pretty good (the nurse practioner read the results wrong) so my heart can withstand excercise pretty well, so keep up the cardiac rehab. She also said my heart has shrunk a tiny bit (about 4 millimeters). That is a miniscule amount, but it's not getting bigger. And that transplant in the next few years seems pretty unlikely. Which is certianly good.
All in all, it was an ok visit, but I told Nick I think the problem is I almost feel like she's being too positive about the whole thing. To me, she's acting like this condition is not that big of a deal. Nick sees her as being optimistic and not dwelling on the bad stuff. I'm just not sure if I like her approach. So I'm kicking around the idea of getting a second opinion. Not that I think someone else will say something different, I just wonder if I'll like the way someone else says it. I haven't decided yet, but I'm positive I need to sleep on the idea and not making any decisions when I'm this loopy.
So the second doctor's appointment...I don't think I've told most of you this yet, but Nick and I decided to go see a Perinatologist (high risk obstetrician). We aren't ready to have kids yet, but we thought it would be a good idea to talk to someone that handles cases like mine, just to get the lay of the land.
It was to our good fortune that I was referred to one of the best perinatologists on the west coast. He actually invented a test that looks at the aorta and can tell how the heart will respond to pregnancy. He routinely has 2-3 people with cardiomyopathy in his care at any time. He's kind of a big deal. : )
He was straight-up awesome. He was super blunt, but also very caring and he was acutally willing to give me options and tell me what our course of action would be in each scenario. He gave me the facts and I will love him forever for that. : )
He starts off by saying that he virtually never tells anyone not to get pregnant. He likes a challenge, he likes to help people have their families, he's not scared of much. He said I was one of about 4 people he has told to not get pregnant right now in his 30 year career. My heart's pumping capacity is simply too weak and the likelihood that I would die during pregnancy is almost certain.
But he then went on to say we need to wait about a year to 18 months to see how much my heart has improved. He wants my ejection fraction to get to 50% (it's 20% right now). If we can get there, we should be able to have a baby. I would be monitored incredibly closely (like going to the doc 2x month at first, and then going to 2-3x week near the end). I may end up on bed rest. And it's still risky, but he said people have babies all the time like that. This is the best case scenario.
The next scenario is if my heart gets worse within that time. And if it does, then it's transplant time. And he said having a baby a year after a transplant is no problem at all. Almost as low risk as any other pregnancy.
Then there's the scenario where my heart improves some (say to 35%) but I can't get over the 50% hump. That's the hardest scenario. We could weigh the risks of pregnancy at that point, but it would be a very serious conversation. We could also wait and see if my heart got better in the years that followed. As much as we don't want to wait for years, the doc said we could wait 5-10 years if we have to. I just hope that's not the case. And then there's always adoption. We'll have a family no matter what. It's just a matter of how we get there.
We talked about drug changes, and tests he would do when I got pregnant and it was all very good information. He also talked about how much weight loss can help, so that is our next plan. It is one of the only things I can control in this whole mess, so that's where I'm going to focus my attention for now. It's got to be slow, but I know we can do it. He wants to see us again in a year to see where my heart's at, and we'll reasses then. And he said to take this year to relax, enjoy each other, work on getting better and don't worry about this stuff. We'll handle whatever the answer is when the time comes.
All in all, I was SO relieved to talk to this doctor today. It was just what I needed. I felt understood, encouraged, excited, happy, informed and hopeful. That's exactly what I needed and it makes for a great start to the weekend. Nick was super happy with the appointment too and I think we can let some worry go for now. I may still make the second opinion appointment, but maybe not. Maybe I just need to trust the process and give the medicine's time to do their job. Patience is not my strong suit, but this diagnosis is turning out to be a crash course in patience. So I'll try.
I'm going to pass out on the couch now.
I love you all!
Jana
ps, did anyone see Grey's Anatomy last night?? Whew, I had to pause it 3 times just to let my heart calm down. McDreamy!! No!!!!
5/1/2010-Thinking ahead
Hi All,
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
I don't have anything groundbreaking to tell you today, but I've been mulling some things around in my head and I thought I'd get them out in the open (maybe this will give me the guts to do something about it).
Yesterday I had an appointment with my nurse practitioner to make sure my labs looked ok after my trip to Vegas. They all checked out. : )
We did talk about my prior test results (that bike test I did a few weeks ago and my ejection fraction). I told her that this trip I took really showed me that I can have fun and be happy with this illness, but it also reminded me how very limited I am.
See, I've been thinking a lot about the future and how I want that to look. I know I don't have a ton of control in this whole situation, but knowing facts helps me make contingency plans. Which I like. I come from a long line of planners (shout out to ALL the women on my mom's side :) and "well, let's just wait and see" is about the most annoying phrase anyone can say to me. And it seems like that is ALL the doctors tell me lately.
It occured to me that I feel like I'm getting the same treatment plan as the docs would give a 70 year old. It's like they are ok with me spending a vast majority of my time resting on the couch. I'm not ok with that. The bar needs to be set higher for me. The way I am today, I absolutley could not take care of a baby. I can't work 40 hours a week. I can't take a vacation without a wheelchair. These are important things to me.
I'm also getting frusterated with the treatment options I've been given lately. Meds or transplant. Really? It seems like there is a pretty big gap between those two options. Is there nothing they can do to make me feel better and have more energy? Is there a clinical trial I can be part of? Is there a procedure we haven't talked about?
While telling this to my NP, she did tell me there is the option of putting another lead onto Sparky (which will make him a biventricular defibulator) and other lead will help with the sychronization of my heartbeats. Evidentally, that usually gives the patient a lot more energy and can improve the ejection fraction. Ok, why has no one told me this before? That right there makes me wonder what other options are out there that no one has thought to tell me before.
I also talked to my NP about transplant a bit. She said you have to wait for a window of opportunity with a transplant. You can't do it too soon and you can't wait too long. Well, I'm not feeling 100% confident that they are going to catch me in the right window because they only seem to be doing these big tests when I put up a fuss. If I hadn't been a whiny baby and groused about feeling lousy for weeks, they wouldn't have done those two tests until next year. And the results as of now were bad. Who knows how they would have looked in a year?
I think I'm unintentionally fooling them with how I look when I go to doctor's visits. I'm going to quit wearing makeup and taking a shower. Then we'll see what kind of tests I get. ; )
So all this mulling keeps leading to one thing. Have a heart to heart (heh) conversation with my cardiologist and tell her my thoughts. Bring up my serious concerns and ask for straightforward answers. I do understand that my doc honestly may not be able to tell me what may happen and in what timeline, but I at least want to know what the studies have shown and what she has seen in her experience. And maybe ask her to do some additional reserach. Good grief, that hospital has earned enough money on me, I think it's only fair.
Sorry for the long, boring post but I thought some of you might be interested in the more clinical side of this.
I'll keep you posted!
Love,
Jana
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