Hi All,
Well, the results (all 16 of them) are in- I don't have sarcoidosis! Yay, yay, yay!
Let's back up a hair. When we last spoke, I had gathered up all my gumption and told the fancy lung doctor that I didn't want to have the broncoscopy. There was wailing and gnashing of teeth (on their side, not mine) but I was able to get it postponed. But then my cardiologist confirmed that she'd like to have the test done, just so we could rule out sarcoid totally.
So I had the test and it wasn't that bad. I saw the doc this week for the results and before he told me it was clean, he wagged his finger at me, scolding me for not listening to him and "getting worked up" about the whole thing. Evidently he does not frequently get his authority questioned. I then rolled my eyes at him (Blatantly too. Like 7th grader style) and said "Whatever". Not my proudest, most mature moment, but he dragged it out of me! Whatever.
We seemed to call a truce after that and he told me the test was perfectly clean and that he was comfortable scratching sarcoidosis off the "what the heck made this girl so sick" list. He did tell me that my lungs do have a problem with how much oxygen they diffuse to my body. Somehow this isn't the same thing as the oxygenation of my blood (measured by that little thing they clip on your finger). That level is always great. This is something else. All I know is 80% is good enough. Mine was 65% two months after I was diagnosed and now it's 52%. I can't remember what the level is where we start to get worried, but for now, we'll just do another breathing test in 4 months to see if it's changed.
I also saw my main heart doc and she was happy with how I'm doing these days. She said I look a lot better, and seem to have more energy. She was pleased to hear I'm going to school but warned me about pushing myself too hard. She's definitely right- I have to watch that. My type-A side comes out something awful with school and I do crazy things. I've been known to leave a vacation early so I could get more study time in. And then make the professor cookies just to be sure the A was in the bag. (FYI, the cookies worked. But where does that pesky brown-noser rep come from?)
Anyway, I'm excited about school and the opportunities it will bring. Every time I hear a speaker or read a case study, I get so excited about work again. I can't wait to find the right fit for me down the road.
Oh and by the way, I'm now a University of Washington Husky! (Only behind the Texas Longhorns. I can't betray the Longhorns- it's in my wedding vows). Rrrrruf! (Or whatever the Husky cheer is. I'll learn it soon and get back to you).
Later gators!
Love,
Jana
Words I love to hear -7/31/2011
So one of the best phrases you can hear is "The scan showed that mass on your liver is just a little cyst, nothing to worry about at all". And I heard that this week! Ah, the sweet bliss of scratching a dreaded disease off the list. We'll just get a sonogram of my liver next year to be sure it's still not a problem. Easy as pie!
Another great thing that has happened this week is that I now have a doctor that is coordinating all my care. I mean all of it. He is working with my primary care doc, finishing up his residency. My primary care doc asked him if he would take this on because I was getting so overwhelmed with all the tests, possible diagnoses, research, etc. So the first day he got my files, he spent 7 hours (7!!) reading through all my medical notes, labs, tests and scans. He even organized all my tests into an excel spreadsheet (a man after my own heart).
Later that day, we met and just talked for an hour and a half. He reviewed a lot of tests with me, asked me tons of questions and ordered a few blood tests. I told him how frustrated I was with the sarcoidosis hunt- feeling like we've done an extraordinary amount of testing and haven't found a thing. And now they want to do a broncoscopy. It is a somewhat invasive test where I have to be under anesthsia and I'm just not crazy about the idea. The test was set for Friday morning, but I was having reservations.
My new Wonder Doc told me he agreed that the value of the test was questionable in my situation, and I decided I wanted to postpone the test. That way I could talk to my cardiologist before I did it, just to make sure it was necessary. Well, if that didn't cause a stink. When I called to cancel, the bronch lab lady was aghast that I would question the doctor's wisdom. I told her I wasn't ruling it out, I just wanted some more time. After I got off the phone, a resident that was going to be part of the procedure called me to ask if I was really sure. I said yes. She asked again. I said yes. She asked again (No joke. 3 times. Seriously). I told her I was completely sure. So she grudgingly agreed to cancel the test. I then grudgingly agreed to make an appointment with the sarcoidosis doc in a few weeks to discuss again. Good grief.
But other than all these tests and stuff, I've been feeling pretty good! I rode my bike 6 miles on Friday (whoa!) and it was totally awesome. I was exhausted for the rest of the day, but it was worth it. : )
In a few days, we are headed to Oklahoma for my brother Skylar's wedding. His fiance Sabrina is a hoot and is already a part of the family. The only snag is that it
is supposed to be 109 degrees there. *cough* 109. I've gotten soft, living in Seattle where "hot" is 80. I'm a touch worried about it, just because I tend to get dizzy and wimpy in the heat...A/C will be my best pal! But seeing the family and friends will be awesome. And Nick gets to go with me for the weekend- holla!
So that's all for now...I'm excited to see some of you at the wedding!
Much love,
Jana
Another great thing that has happened this week is that I now have a doctor that is coordinating all my care. I mean all of it. He is working with my primary care doc, finishing up his residency. My primary care doc asked him if he would take this on because I was getting so overwhelmed with all the tests, possible diagnoses, research, etc. So the first day he got my files, he spent 7 hours (7!!) reading through all my medical notes, labs, tests and scans. He even organized all my tests into an excel spreadsheet (a man after my own heart).
Later that day, we met and just talked for an hour and a half. He reviewed a lot of tests with me, asked me tons of questions and ordered a few blood tests. I told him how frustrated I was with the sarcoidosis hunt- feeling like we've done an extraordinary amount of testing and haven't found a thing. And now they want to do a broncoscopy. It is a somewhat invasive test where I have to be under anesthsia and I'm just not crazy about the idea. The test was set for Friday morning, but I was having reservations.
My new Wonder Doc told me he agreed that the value of the test was questionable in my situation, and I decided I wanted to postpone the test. That way I could talk to my cardiologist before I did it, just to make sure it was necessary. Well, if that didn't cause a stink. When I called to cancel, the bronch lab lady was aghast that I would question the doctor's wisdom. I told her I wasn't ruling it out, I just wanted some more time. After I got off the phone, a resident that was going to be part of the procedure called me to ask if I was really sure. I said yes. She asked again. I said yes. She asked again (No joke. 3 times. Seriously). I told her I was completely sure. So she grudgingly agreed to cancel the test. I then grudgingly agreed to make an appointment with the sarcoidosis doc in a few weeks to discuss again. Good grief.
But other than all these tests and stuff, I've been feeling pretty good! I rode my bike 6 miles on Friday (whoa!) and it was totally awesome. I was exhausted for the rest of the day, but it was worth it. : )
In a few days, we are headed to Oklahoma for my brother Skylar's wedding. His fiance Sabrina is a hoot and is already a part of the family. The only snag is that it
is supposed to be 109 degrees there. *cough* 109. I've gotten soft, living in Seattle where "hot" is 80. I'm a touch worried about it, just because I tend to get dizzy and wimpy in the heat...A/C will be my best pal! But seeing the family and friends will be awesome. And Nick gets to go with me for the weekend- holla!
So that's all for now...I'm excited to see some of you at the wedding!
Much love,
Jana
Weird news de-liver-y 7/24/2011
Hi All,
Well, I don't have too long to write this morning, but I'm feeling mucho guilty about leaving you in the dark for so long. Truth be told, I wrote a killer post the other day and lost it. Just try to imagine the most thrilling, informative, hilarious, and touching 8 paragraphs- yeah, that was it.
So here is the quick and dirty...
Sarcoidosis- Still on the hunt. The last cat scan I had was inconclusive. Again. I guess there was some stuff that seemed sarcoidosis-ish, so I will soon have a broncoscopy. That's where they numb my nose and throat, put a tube down my nose into my lungs, squirt a little saline in there and then suction the saline out again. They they look at it to see if they can spot scarc cells. They doc has said he hopes this will give him enough information to decide if I have sarcoidosis or not.
I've been hoping for "not", but he did say that if I had it, and we treated it with steroids, it could actually help my heart function. Like make my ejection fraction go up (maybe to 40%, up from my 25% now). That's pretty awesome, because that has the potential to give me a lot more energy and stamina. So we'll see.
Besides the sarcoidosis, another thing the docs are looking into is my liver. That last cat scan happened to get some pictures of my liver, and lo and behold- there is a mass on it. Gulp. No one wants to hear the word "mass". Ever. It's about 1 inch in diameter. We have no idea if it's new or if I've had it forever. I have a liver cat scan set for next week to get a better look at it. If it's suspicious, they will probably do a biopsy. I am also getting a referral to a hepatologist (liver doctor) next week to get their opinion.
It could be lots of things. Of course, the terrifying one is cancer. But more likely it's just a benign lump that won't even need to be removed. Or it could have something to do with the sarcoidosis. So I had a little freak out when I first found out about it, but am doing pretty good now. I have managed to stay off the fear-mongering internet message boards (this is a major accomplishment). I'm ready to jump all over this coming week, but until then, I'm focusing on other things.
In better news, I've been feeling pretty good lately. I have been more tired the last few weeks, but I have also been trying to get more exercise so I may just be tired from that. I've started riding Nick's bike and am loving the fact that I am now a cool hipster cyclist! Ok, not a cyclist. A bicycler. Not as cool, but more accurate. To be a cool cyclist, I need to wear an ergonomically skintight outfit, have 8 bikes, and ride 60 miles a day. I'm up to 3 miles now...maybe I can build up to 60 next week.
In even better news than that- my 15 year old sister Rhetta is here! Yahoo! We've gone shopping, had pedicures, rode bikes on the beach, gone to a pinata party, watched movies- in short, had a rockstar time. I've also dragged her around to everyone I know, showing her and her dazzling personality off. She's completely adorable and a regular hoot. It's been a blast and just what I needed to keep my mind off of my liver shenanigans.
I'll let you know what the liver story is as soon as they tell me. But for now, I'm gonna scoot- we've got some sightseein' to do!
I love you all!
Jana
Well, I don't have too long to write this morning, but I'm feeling mucho guilty about leaving you in the dark for so long. Truth be told, I wrote a killer post the other day and lost it. Just try to imagine the most thrilling, informative, hilarious, and touching 8 paragraphs- yeah, that was it.
So here is the quick and dirty...
Sarcoidosis- Still on the hunt. The last cat scan I had was inconclusive. Again. I guess there was some stuff that seemed sarcoidosis-ish, so I will soon have a broncoscopy. That's where they numb my nose and throat, put a tube down my nose into my lungs, squirt a little saline in there and then suction the saline out again. They they look at it to see if they can spot scarc cells. They doc has said he hopes this will give him enough information to decide if I have sarcoidosis or not.
I've been hoping for "not", but he did say that if I had it, and we treated it with steroids, it could actually help my heart function. Like make my ejection fraction go up (maybe to 40%, up from my 25% now). That's pretty awesome, because that has the potential to give me a lot more energy and stamina. So we'll see.
Besides the sarcoidosis, another thing the docs are looking into is my liver. That last cat scan happened to get some pictures of my liver, and lo and behold- there is a mass on it. Gulp. No one wants to hear the word "mass". Ever. It's about 1 inch in diameter. We have no idea if it's new or if I've had it forever. I have a liver cat scan set for next week to get a better look at it. If it's suspicious, they will probably do a biopsy. I am also getting a referral to a hepatologist (liver doctor) next week to get their opinion.
It could be lots of things. Of course, the terrifying one is cancer. But more likely it's just a benign lump that won't even need to be removed. Or it could have something to do with the sarcoidosis. So I had a little freak out when I first found out about it, but am doing pretty good now. I have managed to stay off the fear-mongering internet message boards (this is a major accomplishment). I'm ready to jump all over this coming week, but until then, I'm focusing on other things.
In better news, I've been feeling pretty good lately. I have been more tired the last few weeks, but I have also been trying to get more exercise so I may just be tired from that. I've started riding Nick's bike and am loving the fact that I am now a cool hipster cyclist! Ok, not a cyclist. A bicycler. Not as cool, but more accurate. To be a cool cyclist, I need to wear an ergonomically skintight outfit, have 8 bikes, and ride 60 miles a day. I'm up to 3 miles now...maybe I can build up to 60 next week.
In even better news than that- my 15 year old sister Rhetta is here! Yahoo! We've gone shopping, had pedicures, rode bikes on the beach, gone to a pinata party, watched movies- in short, had a rockstar time. I've also dragged her around to everyone I know, showing her and her dazzling personality off. She's completely adorable and a regular hoot. It's been a blast and just what I needed to keep my mind off of my liver shenanigans.
I'll let you know what the liver story is as soon as they tell me. But for now, I'm gonna scoot- we've got some sightseein' to do!
I love you all!
Jana
Fancy news! 6/23/11
Hi All,
It's so rude of me to write a blog while I'm still in the hospital and then not follow it up. How rude.
So I was released the next day, and have mostly been fine since. They are now thinking that the attacks were caused by spasming veins. Ever since I've been sick, the docs have commented that my veins seize up when they try to thread any wires through them. It's like a charley horse, but in a tiny vein. Well, it looks like some of my veins are doing that when I exert myself (both attacks came after I walked a little faster and further than I should have).
The good news is that nitroglycerine should help, and as I get in better shape from cardiac rehab (which I've been back at for about 2 weeks), my heart should be able to work more without spasming.
I did have a full body scan and 2 cat scans last week, trying to figure out the elusive sarcoidosis. I'm about ready to tell them that if it's this hard to find, do we really need to keep looking? I'll see the sarc specialist sometime this next month and see what he says, but if it looks like a wild goose chase, I'm out.
I am happy to report that I've been feeling really good lately. I definately still have some crummy days, but I've had some excellent ones too. And a few of those excellent days have coincided with gorgeous sunny days in Seattle. Driving down near the lake and the bay with the windows down, sunglasses on, and jamming to Justin Bieber? Yes please! (Oh you know when JB comes on the radio, you dig it. Don't lie.)
I've saved the fancy news for last...some of you already know due to the wonders of Facebook- I got accepted into the University of Washington's business school! I'm going to start working on my MBA (part time) this fall. I'm so excited! I'm pretty sure I'm going to need a unique job when I can go back to work (flexible hours, maybe contract work) and I think having an MBA will let me get the best job for my needs. Or maybe even work for myself, starting a consulting business. I'm so excited to get started with the next step in my life. One of the worst parts of this illness has been that I've felt stuck and without any control. No more!
I've spent a LOT of time thinking about the pros and cons of going back to school. What if I get sick and have to spend 2 weeks in the hospital? What if school makes me really tired? What if I take a turn for the worse and need a transplant? All valid points, but I'm willing to take the risk. I'll handle any setbacks that I come across and reasses as needed. My docs are very encouraging about school and think that having something big to work towards tends to help patients more than hurt them.
So come September, you can find me at UW cheering for the Huskies, getting my business on!
Lots of love,
Jana
It's so rude of me to write a blog while I'm still in the hospital and then not follow it up. How rude.
So I was released the next day, and have mostly been fine since. They are now thinking that the attacks were caused by spasming veins. Ever since I've been sick, the docs have commented that my veins seize up when they try to thread any wires through them. It's like a charley horse, but in a tiny vein. Well, it looks like some of my veins are doing that when I exert myself (both attacks came after I walked a little faster and further than I should have).
The good news is that nitroglycerine should help, and as I get in better shape from cardiac rehab (which I've been back at for about 2 weeks), my heart should be able to work more without spasming.
I did have a full body scan and 2 cat scans last week, trying to figure out the elusive sarcoidosis. I'm about ready to tell them that if it's this hard to find, do we really need to keep looking? I'll see the sarc specialist sometime this next month and see what he says, but if it looks like a wild goose chase, I'm out.
I am happy to report that I've been feeling really good lately. I definately still have some crummy days, but I've had some excellent ones too. And a few of those excellent days have coincided with gorgeous sunny days in Seattle. Driving down near the lake and the bay with the windows down, sunglasses on, and jamming to Justin Bieber? Yes please! (Oh you know when JB comes on the radio, you dig it. Don't lie.)
I've saved the fancy news for last...some of you already know due to the wonders of Facebook- I got accepted into the University of Washington's business school! I'm going to start working on my MBA (part time) this fall. I'm so excited! I'm pretty sure I'm going to need a unique job when I can go back to work (flexible hours, maybe contract work) and I think having an MBA will let me get the best job for my needs. Or maybe even work for myself, starting a consulting business. I'm so excited to get started with the next step in my life. One of the worst parts of this illness has been that I've felt stuck and without any control. No more!
I've spent a LOT of time thinking about the pros and cons of going back to school. What if I get sick and have to spend 2 weeks in the hospital? What if school makes me really tired? What if I take a turn for the worse and need a transplant? All valid points, but I'm willing to take the risk. I'll handle any setbacks that I come across and reasses as needed. My docs are very encouraging about school and think that having something big to work towards tends to help patients more than hurt them.
So come September, you can find me at UW cheering for the Huskies, getting my business on!
Lots of love,
Jana
She's a celebrity! 6/11/2011
Hi All,
Heart attack count: 2. Pain and duration of this attack: 1/3 as bad as the last one. Severity of this one compared to the last one: only about 1/10. So in comparison, this little "event" was a picnic!
Let me set the stage. Yesterday afternoon I had been asked to do an interview with our local news station- I was talking about a neighborhood initiative I'm part of. So I was out at the park across the street, doing my best Diane Sawyer impression, when the ol' ticker starting hurting. Ugh. Such a bummer. I waited a bit, hoping it would go away, but the pain was in the exact same spots as it was for the last heart attack. So Nick and I decided a trip to the ER was in order. On a Friday night. Whoo hoo.
By the way, let me explain the symptoms of this event. Women and men's heart attack symptoms can vary a lot, so don't just rely on what you see in the movies! My chest hurt right down the middle of the breastbone. You could easily confuse it for heartburn if you didn't know better. My left shoulder blade felt like it was pokingg me in the heart. My neck ached on both sides, below my ears. My jaw and ears ached. And my left arm felt like I'd whacked my funny bone. You can also feel nauseated, sweaty, and disoriented. If you ever have a spell like this, get thee to an ER!! Ok, that conculdes our public service announcement of the day.
So they decided to admit me for observation. Evidentally, the perk of chest pains at the ER is that you get seen in a New York minute (bypassing the sprained ankles and strep throats. Be prepared for lots of dirty looks as you are whisked away and doted on). The downside is there is no way you are getting out of the hospital for at least a day or two.
Right now the docs are hoping I can go home tomorrow. I will continue to have more blood work done today and through the night, checking to see if I have a big spike in the enzyme the heart releases when it's been damaged. I had a bit of a jump earlier today, but nothing to get upset about.
They don't know why I am having these events. I don't have any blockages in my arteries at all, but they are wondering if I have a bit of narrowing in some of my miniscule veins. They are too small to see, but they can cause problems like this. Some of the meds I'm on can cause this narrowing, so it's a pretty good guess. The plan is to take nitroglycerine if this happens again and see if that helps the pain. Nitro opens the blood vessles to let the blood flow freely, getting rid of the pain almost instantly.
I've asked if these events are causing any permanent damage and it looks like they aren't. I'm certainly hoping they aren't going to happen more frequently, but since they're not dangerous, I'm not going to get too wooled up over it. The doc said that if the nitro doesn't handle the pain within 15 minutes, I need to come to the hospital, but if it does, I don't have to mess with that.
So, all in all, this has been a pretty uneventful hospital trip. I've passed the time by showing each and every nurse my news story video. :)This was the LEAD STORY last night. Why yes, it was a very slow news night! Here is the video for you to show your friends and nurses. : )
http://www.q13fox.com/news/kcpq-neighbors-ask-for-alcohol-restrictionsin-thier-area-20110610,0,6969625.story
I'll talk to you soon!
Jana
Heart attack count: 2. Pain and duration of this attack: 1/3 as bad as the last one. Severity of this one compared to the last one: only about 1/10. So in comparison, this little "event" was a picnic!
Let me set the stage. Yesterday afternoon I had been asked to do an interview with our local news station- I was talking about a neighborhood initiative I'm part of. So I was out at the park across the street, doing my best Diane Sawyer impression, when the ol' ticker starting hurting. Ugh. Such a bummer. I waited a bit, hoping it would go away, but the pain was in the exact same spots as it was for the last heart attack. So Nick and I decided a trip to the ER was in order. On a Friday night. Whoo hoo.
By the way, let me explain the symptoms of this event. Women and men's heart attack symptoms can vary a lot, so don't just rely on what you see in the movies! My chest hurt right down the middle of the breastbone. You could easily confuse it for heartburn if you didn't know better. My left shoulder blade felt like it was pokingg me in the heart. My neck ached on both sides, below my ears. My jaw and ears ached. And my left arm felt like I'd whacked my funny bone. You can also feel nauseated, sweaty, and disoriented. If you ever have a spell like this, get thee to an ER!! Ok, that conculdes our public service announcement of the day.
So they decided to admit me for observation. Evidentally, the perk of chest pains at the ER is that you get seen in a New York minute (bypassing the sprained ankles and strep throats. Be prepared for lots of dirty looks as you are whisked away and doted on). The downside is there is no way you are getting out of the hospital for at least a day or two.
Right now the docs are hoping I can go home tomorrow. I will continue to have more blood work done today and through the night, checking to see if I have a big spike in the enzyme the heart releases when it's been damaged. I had a bit of a jump earlier today, but nothing to get upset about.
They don't know why I am having these events. I don't have any blockages in my arteries at all, but they are wondering if I have a bit of narrowing in some of my miniscule veins. They are too small to see, but they can cause problems like this. Some of the meds I'm on can cause this narrowing, so it's a pretty good guess. The plan is to take nitroglycerine if this happens again and see if that helps the pain. Nitro opens the blood vessles to let the blood flow freely, getting rid of the pain almost instantly.
I've asked if these events are causing any permanent damage and it looks like they aren't. I'm certainly hoping they aren't going to happen more frequently, but since they're not dangerous, I'm not going to get too wooled up over it. The doc said that if the nitro doesn't handle the pain within 15 minutes, I need to come to the hospital, but if it does, I don't have to mess with that.
So, all in all, this has been a pretty uneventful hospital trip. I've passed the time by showing each and every nurse my news story video. :)This was the LEAD STORY last night. Why yes, it was a very slow news night! Here is the video for you to show your friends and nurses. : )
http://www.q13fox.com/news/kcpq-neighbors-ask-for-alcohol-restrictionsin-thier-area-20110610,0,6969625.story
I'll talk to you soon!
Jana
Taking some control- 5/1/2011
Hi All,
Well, I told myself I would update you guys as soon as I heard back about the PET scan, but I'm finding I need a few days to process information enough to write about it. Information: processed.
I talked to my NP last week and she said my doc reviewed the results and they were inconclusive. Basically, she said the results weren't clean, but they didn't exactly show sarcoidosis. She is going to talk to her colleague on the east coast that works with strange presentations of sarcoidosis to get his opinion. I'm bi-coastal baby!
I was really shaken up about the whole sarcoidosis thing, and just feeling like my heart stuff is on the decline. Since my heart is pretty shot, why can't I just get on the transplant list? Well, after crying and whining (I know, I'm a real treat), my NP finally said that I'm just not sick enough. I think I knew that in the back of my mind, but I go through this stage every few months - I have some setback, I get scared and frustrated and then beg for a transplant. I'm sure you guys are familiar with the cycle by now, but I somehow always think this time will be different.
So anyway, my NP reminded me of all the reasons it is crucial to keep your own heart as long as possible. We made a med plan and I'll see her again in 2 weeks. Hopefully by that time, my doc will have some answers about the PET scan.
With all this heart stuff, I've been feeling very out of control lately. That comes with the territory, but it was getting to be too much. So I've been trying to take some control where I can. I've been giving myself a mini-makeover (If you watch RHONY, like Ramona!).
I got my curly hair straightened, have gotten some new clothes, I'm wearing more make-up, I've been eating really clean, and getting good sleep. Hopefully I'll be allowed to go back to cardiac rehab in the next week or two, and that will be the icing on the cake. And I'm going to Vegas! I'm meeting my friend Jenny from New Mexico and her friends to bask by the pool, drink pina coladas, and play blackjack. Hit me!
Alright kids, it's a warm-ish sunny day in Seattle so I've got to go soak up every bit I can.
Much love,
Jana
Well, I told myself I would update you guys as soon as I heard back about the PET scan, but I'm finding I need a few days to process information enough to write about it. Information: processed.
I talked to my NP last week and she said my doc reviewed the results and they were inconclusive. Basically, she said the results weren't clean, but they didn't exactly show sarcoidosis. She is going to talk to her colleague on the east coast that works with strange presentations of sarcoidosis to get his opinion. I'm bi-coastal baby!
I was really shaken up about the whole sarcoidosis thing, and just feeling like my heart stuff is on the decline. Since my heart is pretty shot, why can't I just get on the transplant list? Well, after crying and whining (I know, I'm a real treat), my NP finally said that I'm just not sick enough. I think I knew that in the back of my mind, but I go through this stage every few months - I have some setback, I get scared and frustrated and then beg for a transplant. I'm sure you guys are familiar with the cycle by now, but I somehow always think this time will be different.
So anyway, my NP reminded me of all the reasons it is crucial to keep your own heart as long as possible. We made a med plan and I'll see her again in 2 weeks. Hopefully by that time, my doc will have some answers about the PET scan.
With all this heart stuff, I've been feeling very out of control lately. That comes with the territory, but it was getting to be too much. So I've been trying to take some control where I can. I've been giving myself a mini-makeover (If you watch RHONY, like Ramona!).
I got my curly hair straightened, have gotten some new clothes, I'm wearing more make-up, I've been eating really clean, and getting good sleep. Hopefully I'll be allowed to go back to cardiac rehab in the next week or two, and that will be the icing on the cake. And I'm going to Vegas! I'm meeting my friend Jenny from New Mexico and her friends to bask by the pool, drink pina coladas, and play blackjack. Hit me!
Alright kids, it's a warm-ish sunny day in Seattle so I've got to go soak up every bit I can.
Much love,
Jana
A bowling ball with a mustache- 4/20/2011
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!
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!
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