Hi All,
I debated writing up a note today because I don't have all the information that I would want, but I guess you can find out the rest when I learn it!
I had the PET scan on Friday and Monday I met with my nurse practitioner (NP) just to check in and see how I was doing since I'd left the hospital. I'd started to perk up by then and was having a lot more energy than I had since I was in the hospital.
The PET scan results were in the computer so I asked my NP to go over them with me. She was hesitant dig into them because my doc needs to interpret them, but we did go over the highlights. Basically, it did show some inflammation in my heart, which is what they would expect to see with sarcoidosis. My NP didn't know if having inflammation could be a result of something else, but is usually does mean sarcoidosis.
They also found two infarcted areas in my heart. (Yes, I know this is serious, but every time she said "infarcted" I snorted. Come on. That word is hilarious. Like top ten funniest words, I'd say.) An infarcted area is a place in the heart that is not receiving or pumping any blood at all. Basically dead heart tissue. Hmm. My NP didn't know if I already had one and the second came along with the heart attack, or if the heart attack caused them both. That is a question for the doc. Another question is about the size of the spots.
We then talked about sarcoidosis in general. If I have it, I'd probably have to start taking steroids right away. The steroids attack the inflammation and hopefully can get it to go into remission. I may be able to taper off the steroids in a few months, or I could have to be on them for a lot longer than that. They have a lot of really lousy side effects like hair growth, weight gain and more. Hopefully, my doc will have some ideas on curbing those effects, because they are really throwing me for a loop. I guarantee you, I'm going to try my best not to turn into a bowling ball with a mustache.
From what I can tell, the good news is that if they treat the sarcoidosis, they can possibly prevent my heart from getting worse. And if my heart does end up wearing out, having sarcoidosis wouldn't prevent me from getting a heart transplant.
Oh, and if I have sarcoidosis, it would likely mean I didn't get all these heart problems from a virus like we thought. That is kind of throwing me off balance. I've kind of made peace with that bit of bad luck, but having a whole other disease is overwhelming and hard for me to get my head around. I'm really trying to not think too much about it until I meet with my doc this coming Tuesday and get some solid information.
Nick has (as always) been there to hold my hand, calm me down, and let me soak his shirt with my tears. I made a total rookie mistake and went to Dr. Google to get details on this condition and medications. If I ever lend you any advice, please let it be this: Those message boards and homemade websites about diseases are way better at causing hyperventilation and stress headaches than they are at giving any worthwhile information. Don't read them- especially when you are confused, scared, and ill-informed. FYI.
Ok, well that's all I've got for now. I'd appreciate any extra prayers or good vibes you've got laying around. I really just need to calm down and wait for real information on Tuesday. *Breathe Jana, breathe*
Lots of love,
Jana
ps, We got word that our neighbor is making improvements every day! She has a very long road ahead of her, but she's moving in the right direction!
Not the fun kind of PET- 4/15/2011
Hi All,
I'm sorry for not updating sooner! I've been pretty tired this week, and not quite feeling like writing yet.
I got home from the hospital on Monday evening. I was so sick of that place. I was there a week this time. I've stayed that long before, but for some reason this stint felt longer than the others. I'm not sure how, but this stay was more monotonous but also more nerve wracking than previous stays. It didn't help matters that my veins were not in the mood to give up blood, so every poke was painful and drawn out. I think they took blood 30 times while I was there. Good grief.
After all that time, the docs were no closer to figuring out the physiological reason for my heart attack. Obviously, it was triggered by the situation with our neighbor, but we need to determine why my body's response was to have a heart attack.
They did two angiograms and came to the conclusion that I still don't have any blockages at all. Good news, except that would have explained this and would have been treatable with a stent. So we're back at step one.
So my doc ordered a PET scan that I got today. In case you are like everyone else and don't know what a PET scan is- it's like a cat scan where you lay down in a huge machine that looks like a giant roll of paper towels. (Hmm, not sure if that is the right analogy. Anyway.) They then take tons of images of your heart (or whatever body part they are looking at). They literally took images for 6 intervals of 15-30 minutes each. So it was a lot of laying down. No real bother except when I decided I had to pee...1 minute into a 30 minute interval. It is really hard to think of anything besides peeing at that point, trust me.
The point of the scan is to look for sarcoidosis (mentioned a few posts ago) as well as look at my teeny weeny veins to look for blockages there. They also did another test to see how much of my heart muscle tissue is damaged. I guess that's just a FYI-I'm not sure what they would do with that info. Maybe it's for a bet between the doctors. (I like to imagine that the doctors have lots of wagers and races behind the scenes- just to keep things interesting).
Oh, and a lot of you have asked how our neighbor Pegi is doing. We haven't been able to find out any updates since last week, which is super frusterating. Last anyone heard, she had massive brain trauma and things didn't look good at all. Also, we haven't heard if the police are any closer to making an arrest. I just can't believe someone could get away with something so heinous. But I'm sure the police are doing everything they can. Anyway, please keep Pegi and her family in your thoughts and prayers. They need it.
I hope to get the results of the PET scan on Monday- I'll try to be better about updating you sooner with the deets. Sometimes the tests run together and I forget what I've talked about and what I haven't. Maybe I need a chart or an action plan to keep me on task...whoa,no, that's way too dorky.
That's all I've got for today...have a great weekend!!
Lots of love,
Jana
I'm sorry for not updating sooner! I've been pretty tired this week, and not quite feeling like writing yet.
I got home from the hospital on Monday evening. I was so sick of that place. I was there a week this time. I've stayed that long before, but for some reason this stint felt longer than the others. I'm not sure how, but this stay was more monotonous but also more nerve wracking than previous stays. It didn't help matters that my veins were not in the mood to give up blood, so every poke was painful and drawn out. I think they took blood 30 times while I was there. Good grief.
After all that time, the docs were no closer to figuring out the physiological reason for my heart attack. Obviously, it was triggered by the situation with our neighbor, but we need to determine why my body's response was to have a heart attack.
They did two angiograms and came to the conclusion that I still don't have any blockages at all. Good news, except that would have explained this and would have been treatable with a stent. So we're back at step one.
So my doc ordered a PET scan that I got today. In case you are like everyone else and don't know what a PET scan is- it's like a cat scan where you lay down in a huge machine that looks like a giant roll of paper towels. (Hmm, not sure if that is the right analogy. Anyway.) They then take tons of images of your heart (or whatever body part they are looking at). They literally took images for 6 intervals of 15-30 minutes each. So it was a lot of laying down. No real bother except when I decided I had to pee...1 minute into a 30 minute interval. It is really hard to think of anything besides peeing at that point, trust me.
The point of the scan is to look for sarcoidosis (mentioned a few posts ago) as well as look at my teeny weeny veins to look for blockages there. They also did another test to see how much of my heart muscle tissue is damaged. I guess that's just a FYI-I'm not sure what they would do with that info. Maybe it's for a bet between the doctors. (I like to imagine that the doctors have lots of wagers and races behind the scenes- just to keep things interesting).
Oh, and a lot of you have asked how our neighbor Pegi is doing. We haven't been able to find out any updates since last week, which is super frusterating. Last anyone heard, she had massive brain trauma and things didn't look good at all. Also, we haven't heard if the police are any closer to making an arrest. I just can't believe someone could get away with something so heinous. But I'm sure the police are doing everything they can. Anyway, please keep Pegi and her family in your thoughts and prayers. They need it.
I hope to get the results of the PET scan on Monday- I'll try to be better about updating you sooner with the deets. Sometimes the tests run together and I forget what I've talked about and what I haven't. Maybe I need a chart or an action plan to keep me on task...whoa,no, that's way too dorky.
That's all I've got for today...have a great weekend!!
Lots of love,
Jana
Borat is my doctor- 4/10/2011
Hi All,
Well, this marks day 5 in the hospital. Since Tuesday, the docs have been trying to piece together why I had this event (that's what they call these heart situations- but don't confuse this event with other events such as a high school reunion or bar mitzvah. Rookie mistake).
In order to solve this mystery, I've given them tons of blood, had x-rays and the other day the docs decided that they wanted to do an angiogram (snaking a wire in my heart to shoot dye into my arteries to look for any blockage). It would be super rare if I had any blockage, but they just wanted to check.
So Friday, they did this newfangled angiogram where they went through my wrist instead of my groin (fabulous advancement in medical technology, I'd say) and everything was clean as a whistle. But to my dismay, I found that they could only snake the wire into one side of my heart. My anatomy didn't allow them to go to the other side. So tomorrow I have to go in for the old school angiogram. Bah. Lousy excuse for medical technology advancement, I'd say.
Another reason I've been here so long is my blood pressure is just too low and my blood is too thin to do the other angiogram. So I've been getting fluids and blood thickeners for a few days, trying to get me ready for the test. I mentioned adding a roux to my IV to thicken up the blood. It always works on soup! They didn't care.
I do have a new doc on my team this time. I'm used to most of the docs here, but new fellows and residents do cycle through the cardiac floor. And this time, the new doc is...Borat. That is the only way I can describe him. He has an indiscriminate eastern European accent, wild curly hair and a moustache, and thinks he's hilarious. Today, I asked when I would have that test tomorrow and he says (with a twinkle in his eye) "Sometime between 7am and 5pm. Hahahahaha!!". After Jerry Seinfeld composed himself, he said "No, just kidding. I have no idea". Oh well, if my doctor can't be well informed, I at least want him to know how to tell a good joke. : )
Oh, as for when I am expected to be able to blow this joint- It's looking like Tuesday.
Alright, I'm going to catch a Sunday nap. Adios!
Love to you all,
Jana
Well, this marks day 5 in the hospital. Since Tuesday, the docs have been trying to piece together why I had this event (that's what they call these heart situations- but don't confuse this event with other events such as a high school reunion or bar mitzvah. Rookie mistake).
In order to solve this mystery, I've given them tons of blood, had x-rays and the other day the docs decided that they wanted to do an angiogram (snaking a wire in my heart to shoot dye into my arteries to look for any blockage). It would be super rare if I had any blockage, but they just wanted to check.
So Friday, they did this newfangled angiogram where they went through my wrist instead of my groin (fabulous advancement in medical technology, I'd say) and everything was clean as a whistle. But to my dismay, I found that they could only snake the wire into one side of my heart. My anatomy didn't allow them to go to the other side. So tomorrow I have to go in for the old school angiogram. Bah. Lousy excuse for medical technology advancement, I'd say.
Another reason I've been here so long is my blood pressure is just too low and my blood is too thin to do the other angiogram. So I've been getting fluids and blood thickeners for a few days, trying to get me ready for the test. I mentioned adding a roux to my IV to thicken up the blood. It always works on soup! They didn't care.
I do have a new doc on my team this time. I'm used to most of the docs here, but new fellows and residents do cycle through the cardiac floor. And this time, the new doc is...Borat. That is the only way I can describe him. He has an indiscriminate eastern European accent, wild curly hair and a moustache, and thinks he's hilarious. Today, I asked when I would have that test tomorrow and he says (with a twinkle in his eye) "Sometime between 7am and 5pm. Hahahahaha!!". After Jerry Seinfeld composed himself, he said "No, just kidding. I have no idea". Oh well, if my doctor can't be well informed, I at least want him to know how to tell a good joke. : )
Oh, as for when I am expected to be able to blow this joint- It's looking like Tuesday.
Alright, I'm going to catch a Sunday nap. Adios!
Love to you all,
Jana
A tragedy- 4/6/2011
Hi All,
Wow, it's been an insane few days. First, I have some terrible news. Yesterday afternoon, our next door neighbor was brutally attacked in her home and is not expected to survive. It looks like it was a domestic violence situation, and not a random attack. They haven't caught the person who did it yet, but we are hoping they will soon.
So this awful event lead to my crazy situation. I got home yesterday about 4:15pm and as I was driving up, I saw flashing lights right by our house. I thought "Ha! They caught that rotten burglar that's been hanging around". But as I got closer I saw there were about 15 police cars by my house and our street was roped off with police tape. And I start to freak out. A cop told me to find a place to park and come talk to him.
I had to park about a block and a half away (including going halfway up our wildly steep hill). I made it halfway up the hill, going really slow so my heart would be ok. It was beating a little fast, but nothing unusual. The detective came over to talk to me, and as I explained how I knew Pegi and what I knew about her, my heart started to hurt a bit. The more details I found out from the police, the worse my heart felt. They told me her head and body were beaten, and she crawled outside her house to scream for help, and rolled down our very steep hill, probably causing more damage. Strangely, she was in her underwear, and her gas stove was on full blast, but there was no flame. After hearing all this, I sat down to let my heart chill out a bit, but the pain didn't get better.
An officer called an ambulance for me and it arrived not a moment too soon. The worst chest pain I've ever had I would rank as a 3 on a scale on 1-10. Yesterday's pain was a 9. It was excruciating. I felt a terrible pressure in the middle of my chest, my left shoulder blade felt like it was stabbing my chest, and my neck and jaw were killing me. The medic's were super kind and calming, but my anxiety level was through the roof.
I got 4 doses of morphine and 2 nitroglycerin before it started to take the edge off at all, at about 11pm. I was surprised the pain kept going on for that long. The whole time I was sure it was a panic attack and not a heart attack.
So the ER docs did a lot of tests, and found that my heart started to release enzymes that are produced when heart muscle dies (that's what happens in a heart attack). So I did, in fact, have a heart attack. I can't really get my head around that. It seems pretty unreal. It was a small attack, but they are all serious, no matter how big or small.
The docs don't think the attack was caused by any artery blockage, because I've never had any on the tests they've done. It was more likely triggered by the stress of the situation. That makes complete sense to me. Even today, if I think too much about what happened to her, my heart starts hurting and I can't breathe all that well.
So I've been here at UWMC for observation and I should be able to go home tomorrow. I will have several big tests next week, as the docs try to figure out why my heart responded to this situation with a heart attack. They did do an ultrasound of my heart, and my ejection fraction is 35, exactly what is was back in November. So it's great that that number didn't take a huge dive with this.
I do want to figure out what this means for the future, if anything. Does this mean I'm at risk for more heart attacks? Would they be bigger/more dangerous? Does this put me closer to, further from or make no difference regarding a transplant? All questions I hope to be able to answer soon.
As always, thank you all for your kind words, love and prayers. You all are too good to me- that's the truth.
I love you all!
Jana
Wow, it's been an insane few days. First, I have some terrible news. Yesterday afternoon, our next door neighbor was brutally attacked in her home and is not expected to survive. It looks like it was a domestic violence situation, and not a random attack. They haven't caught the person who did it yet, but we are hoping they will soon.
So this awful event lead to my crazy situation. I got home yesterday about 4:15pm and as I was driving up, I saw flashing lights right by our house. I thought "Ha! They caught that rotten burglar that's been hanging around". But as I got closer I saw there were about 15 police cars by my house and our street was roped off with police tape. And I start to freak out. A cop told me to find a place to park and come talk to him.
I had to park about a block and a half away (including going halfway up our wildly steep hill). I made it halfway up the hill, going really slow so my heart would be ok. It was beating a little fast, but nothing unusual. The detective came over to talk to me, and as I explained how I knew Pegi and what I knew about her, my heart started to hurt a bit. The more details I found out from the police, the worse my heart felt. They told me her head and body were beaten, and she crawled outside her house to scream for help, and rolled down our very steep hill, probably causing more damage. Strangely, she was in her underwear, and her gas stove was on full blast, but there was no flame. After hearing all this, I sat down to let my heart chill out a bit, but the pain didn't get better.
An officer called an ambulance for me and it arrived not a moment too soon. The worst chest pain I've ever had I would rank as a 3 on a scale on 1-10. Yesterday's pain was a 9. It was excruciating. I felt a terrible pressure in the middle of my chest, my left shoulder blade felt like it was stabbing my chest, and my neck and jaw were killing me. The medic's were super kind and calming, but my anxiety level was through the roof.
I got 4 doses of morphine and 2 nitroglycerin before it started to take the edge off at all, at about 11pm. I was surprised the pain kept going on for that long. The whole time I was sure it was a panic attack and not a heart attack.
So the ER docs did a lot of tests, and found that my heart started to release enzymes that are produced when heart muscle dies (that's what happens in a heart attack). So I did, in fact, have a heart attack. I can't really get my head around that. It seems pretty unreal. It was a small attack, but they are all serious, no matter how big or small.
The docs don't think the attack was caused by any artery blockage, because I've never had any on the tests they've done. It was more likely triggered by the stress of the situation. That makes complete sense to me. Even today, if I think too much about what happened to her, my heart starts hurting and I can't breathe all that well.
So I've been here at UWMC for observation and I should be able to go home tomorrow. I will have several big tests next week, as the docs try to figure out why my heart responded to this situation with a heart attack. They did do an ultrasound of my heart, and my ejection fraction is 35, exactly what is was back in November. So it's great that that number didn't take a huge dive with this.
I do want to figure out what this means for the future, if anything. Does this mean I'm at risk for more heart attacks? Would they be bigger/more dangerous? Does this put me closer to, further from or make no difference regarding a transplant? All questions I hope to be able to answer soon.
As always, thank you all for your kind words, love and prayers. You all are too good to me- that's the truth.
I love you all!
Jana
Stage Makeup and a Power Suit- 4/2/2011
Hi All, So last time I wrote a note, I was in the hospital, getting started on the Sotalol. Good news on that front- the muscle jerks I was having have almost completely stopped! And I've also been able to stop worrying about the 38 other serious side effects that the Amiodarone causes. That's a big relief.
I have come across a snag, and we're not sure if it's from the Sotalol, or just my electrical problems acting up. I've been having these "episodes" where my heart does some weird beat, then my heart rate goes up to about 100, the wind is knocked out of me, I feel a strong squeezing my throat, and I get super lightheaded and feel like I may black out, but I never do.
To figure out what's going on, my doc gave me a King of Hearts. That's the heart monitor that looks like a pager that I had about a year ago. Perhaps you'll remember it because when I press the record button it makes a "hoooonnnnnkkkkk" sound for about 30 seconds. Why yes, as a matter of fact, it is embarrassing. Oh well, it works.
I met with my electrophysiologist yesterday to review the results. And she was completely confused. It seemed like every reading conflicted with another. She consulted with my cardiologist, and she couldn't make heads or tails of it either. They definitely saw odd rhythms, but luckily, none of them are life threatening (love to hear that!). The gist is that my heart's electrical system seems to be acting more erratically though. She mentioned "progressing electrical disease". I didn't ask more about that. I'm not really ready to process something like that yet.
She also ordered a PET scan to check for sarcoidosis. Evidentally, sarcoidosis is a very rare disease that can cause dilated cardiomyopathy (what I have, that the docs have always thought was caused by the flu). Diagnosis can take a long time because doctors rule out about everything under the sun before they go down this route (I guess because it's rare and it's hard to find). Sarcoid (that's what all the cool kids call it) is an inflamation in your body that can cause all sorts of problems, however cardiac sarciod is one of the rarer manifestations. They don't know the cause, but it does usually show up in people 20-40 years old. Anyway, I'll let you know what the test says when I get it (I'm not sure when that will be yet).
Oh, I don't know if I've told you- I've been volunteering for Lifecenter Northwest for awhile now. They are our local organ donation organization and I love them. : ) This Monday, I'm going to a taping at our local news station (New Day Northwest on King 5 for you Seattle peeps) for a segment on a mother whose son was killed protecting a stranger as she was being beaten in the street. She's sharing her story to raise awareness for organ donation. So I'm going to be in the audience with some other volunteers to show support for this brave woman. I'm excited to do that, although I've got to figure out a TV appropriate outfit. If you see a curly haired girl in the audience, wearing stage makeup and a power suit, it's probably me.
Ok, that's all for now I guess!
Much Love, Jana
I have come across a snag, and we're not sure if it's from the Sotalol, or just my electrical problems acting up. I've been having these "episodes" where my heart does some weird beat, then my heart rate goes up to about 100, the wind is knocked out of me, I feel a strong squeezing my throat, and I get super lightheaded and feel like I may black out, but I never do.
To figure out what's going on, my doc gave me a King of Hearts. That's the heart monitor that looks like a pager that I had about a year ago. Perhaps you'll remember it because when I press the record button it makes a "hoooonnnnnkkkkk" sound for about 30 seconds. Why yes, as a matter of fact, it is embarrassing. Oh well, it works.
I met with my electrophysiologist yesterday to review the results. And she was completely confused. It seemed like every reading conflicted with another. She consulted with my cardiologist, and she couldn't make heads or tails of it either. They definitely saw odd rhythms, but luckily, none of them are life threatening (love to hear that!). The gist is that my heart's electrical system seems to be acting more erratically though. She mentioned "progressing electrical disease". I didn't ask more about that. I'm not really ready to process something like that yet.
She also ordered a PET scan to check for sarcoidosis. Evidentally, sarcoidosis is a very rare disease that can cause dilated cardiomyopathy (what I have, that the docs have always thought was caused by the flu). Diagnosis can take a long time because doctors rule out about everything under the sun before they go down this route (I guess because it's rare and it's hard to find). Sarcoid (that's what all the cool kids call it) is an inflamation in your body that can cause all sorts of problems, however cardiac sarciod is one of the rarer manifestations. They don't know the cause, but it does usually show up in people 20-40 years old. Anyway, I'll let you know what the test says when I get it (I'm not sure when that will be yet).
Oh, I don't know if I've told you- I've been volunteering for Lifecenter Northwest for awhile now. They are our local organ donation organization and I love them. : ) This Monday, I'm going to a taping at our local news station (New Day Northwest on King 5 for you Seattle peeps) for a segment on a mother whose son was killed protecting a stranger as she was being beaten in the street. She's sharing her story to raise awareness for organ donation. So I'm going to be in the audience with some other volunteers to show support for this brave woman. I'm excited to do that, although I've got to figure out a TV appropriate outfit. If you see a curly haired girl in the audience, wearing stage makeup and a power suit, it's probably me.
Ok, that's all for now I guess!
Much Love, Jana
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