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
owe. I will be praying as they look into what the mass is on your liver. That is scary! Good for you for staying off the internet sites! I know I would want to be scaring myself on them. :)
ReplyDeleteGive Rhetta a BIG hug for me! I miss that bundle of energy and fun. :) She is good medicine! I am glad you have her!
Hi Jana,
ReplyDeleteI hope you don't mind my commenting on your blog - I came across it doing the very thing you make such a good point against - googling Cardiomyopathy and similar!
My name is Nicole Harvey and I'm from Brisbane, Australia. I just wanted to say how wonderful I found your story - not the events, they kinda suck! But the fact that you've written it all down and put it out there. Whether it was your original intent or not, having something like this to read is very reassuring for people in a similar situation - it means that, no matter how much they sometimes might feel like it, they really aren't the only person in the world going through this!
I was diagnosed with cardiomyopathy in June 2009 when I was 28. No idea what caused it, though the Doctors suspect a virus when I was in my teens. They think I probably lived with it undetected for years until, after flying home from a trip to Europe, I had a stroke. I was very lucky that my husband recognised the symptoms (and suspended his disbelief that this was actually happening to his young, then-girlfriend) and got me to the hospital. After a week in Neurology and an Echo (which they just threw in for good measure, as I had no real symptoms of heart failure) I was diagnosed and was told I had an EF of around 15% (Sad, isn't it, when you actually know what that means and can use the terminology like a Pro!).
I have to consider myself fairly lucky - I've had a defibrillator put in (to be on the safe side, they said), but all symptoms are largely under control. While I generally don't feel sick, the stats tell a different story with my EF still not much more than 20-25%, depending on the day and the technician.
Anyway, I have to say, when I ready your story, I wished that I'd thought to document mine, even if it was just for myself. Reading over everything you've done and every step forward, it must make you so proud! I think I may have been able to count my blessings a little bit better if I could have charted my progress in that way too. As it is, it's taken me a good 18 months to reach the point where I've accepted the condition (you know, the 5 stages of grief and all ...), and I still have some bad days.
My husband and I are just reaching the point where we are talking to the Doctors about children. I'll admit, I'm not expecting any good news on that front, but I have to know, even if it's just so that I can put that thought out of my mind. I have my first stress echo next week, and I was very interested to hear your description of your own - I'll have to see whether the Australian version lives up to your own experiences!
Thank you again for putting your experiences and thoughts out there like this. I hope you have many, many good days to come, and that everything goes well for you from here on in!
Nicole,
ReplyDeleteThank you so much for the sweet comments. I didn't see your email address anywhere- if you'd like to stay in touch just send me a note at jana_farrill@yahoo.com. I don't check my other email address much (hence just seeing this message!).
You could also friend me on Facebook - Jana Farrill Morrelli. A heart friend of mine started a Facebook group for people in our situation (and transplant folks) and it's a great source of support. I'll add you if you can send me a friend request.
I'm so glad to hear your symptoms are mostly under control, but I do know what it is like to have this dreadful disease play such a big part in every decision you make. I especially feel you on the kids thing. I wrote a post back in May 2010 about the high risk baby doc- did you read it? Don't give up...not now doesn't mean never.
Best of luck to you girl! You are officially my most long distance reader I think! : )
Best,
Jana