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
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
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