Last Monday was a good day at the doctor. Last Tuesday seemed to be my reality wake up call.
Tuesday I saw the rheumetologist. That appoinment was a little less encouraging. The good news is my doctors do talk to each other. In fact, they talked while I sat in the office so they could confer on how to proceed next. Basically, I have 2 treatment options, the prednisone, which I need to get off of as soon as possible so I don't destroy my body, and immuno-suppressants, which have thier own nasty side effects (pneumonia, recurring infections, etc). The plan as of Monday was to start drawing me down off the prednisone. That I knew. But now they have decided that, if the sarcoid kicks up again, then they'll stick me immediately on the immuno-suppressants with the prednisone and then draw down the prednisone faster than planned.
If this happens, then I have to do 2-3 hour infusions of immuno-suppressant in the rheumetologist's office every 4-6 weeks for at least a year, plus take an anti-rejection drug for the immuno-suppressant, plus all of the asthma drugs.
The pulmonologist believes the immuno-suppressants are evil and the rheumetologist believes that prednisone is evil (the pulmonologist also believes it is evil, but effective). Hearing from both of them about all the problems with the only drugs that have shown any success at all with Sarcoid was just a little discouraging, especially after I thought things were looking up!
On the up side, there is a small chance (the rheumetologists' words, not mine), that I'll be ok drawing down the prednisone and I won't need the immuno-suppressants for awhile. At least I should be good for the next 3 weeks, I don't think dropping the 5mg will do much, though after spending my Sunday coughing all day, I'm not feeling all that encouraged.
Monday, March 30, 2009
Monday, March 23, 2009
Appointment, but no labs!
I've been getting paranoid about seeing my pulmonologist. 4 weeks ago, I ended up with blood work and a CT scan. 2 weeks ago it was more blood work and ultrasounds of my legs. Today, I was a little worried going in!
But, he explained a lot today. Sarcoidosis is such a systemic disease that it can turn up just about anywhere in the body. and, the more it spreads, the more problems it can cause or even just mimic. So, as a critical care doctor, he tends to start with the worst case scenario, and back down from there. Last week, I showed up in his office with a swollen and bruised leg. He went to blood clot. After we ruled that out, he was able to talk with me today about the various skin and bruising symptoms I should not be surprised to see in the future. At least now I won't be scared when I find random bruises and rashes on my legs, though I will be sure my doctor knows about them. Just in case.
Today's appointment was more about getting me caught up on Sarcoid and what I'm dealing with in terms of treatment and long-term prognosis.
First, the steroids. I'm stuck with them for longer than I would have liked. But, we are stepping down, very slowly. My only question was, if we can take 5mg off, does that mean I can sleep for 30 minutes more a night?
Next, the symptoms. Yes, the symptoms may get weirder. And yes, every time they get weirder, he'll run more tests (see above).
Finally, the prognosis. According to my doctor, who is really all I have to go on right now since the literature on this stupid disease is so thin, the challenge for a good long-term prognosis is to figure out what is the minimum number of drugs that I can take to control the Sarcoid. His opinion is that people get into trouble with secondary infections when their doctors keep them on too many steroids for too long, or put them on immuno-suppressants too early. So, my challenge and his, is to figure out what combination of drugs, with lower doses of steroids, I can take until I can get off the steroids entirely and not mess up my lungs permanently in the process.
I don't see the Pulmonologist again for 3 weeks. This, in my world, is a LONG time. I do see the rheumetologist tomorrow, though the pulmonologist told me to not let him put me on any immuno-suppressants just yet (definitely not yet). After that, my only goal is to get control of the steroids so I can sleep more than 5 hours a night and not be quite so crazy. It will be nice a 3 weeks with no doctor appointments!
But, he explained a lot today. Sarcoidosis is such a systemic disease that it can turn up just about anywhere in the body. and, the more it spreads, the more problems it can cause or even just mimic. So, as a critical care doctor, he tends to start with the worst case scenario, and back down from there. Last week, I showed up in his office with a swollen and bruised leg. He went to blood clot. After we ruled that out, he was able to talk with me today about the various skin and bruising symptoms I should not be surprised to see in the future. At least now I won't be scared when I find random bruises and rashes on my legs, though I will be sure my doctor knows about them. Just in case.
Today's appointment was more about getting me caught up on Sarcoid and what I'm dealing with in terms of treatment and long-term prognosis.
First, the steroids. I'm stuck with them for longer than I would have liked. But, we are stepping down, very slowly. My only question was, if we can take 5mg off, does that mean I can sleep for 30 minutes more a night?
Next, the symptoms. Yes, the symptoms may get weirder. And yes, every time they get weirder, he'll run more tests (see above).
Finally, the prognosis. According to my doctor, who is really all I have to go on right now since the literature on this stupid disease is so thin, the challenge for a good long-term prognosis is to figure out what is the minimum number of drugs that I can take to control the Sarcoid. His opinion is that people get into trouble with secondary infections when their doctors keep them on too many steroids for too long, or put them on immuno-suppressants too early. So, my challenge and his, is to figure out what combination of drugs, with lower doses of steroids, I can take until I can get off the steroids entirely and not mess up my lungs permanently in the process.
I don't see the Pulmonologist again for 3 weeks. This, in my world, is a LONG time. I do see the rheumetologist tomorrow, though the pulmonologist told me to not let him put me on any immuno-suppressants just yet (definitely not yet). After that, my only goal is to get control of the steroids so I can sleep more than 5 hours a night and not be quite so crazy. It will be nice a 3 weeks with no doctor appointments!
Friday, March 13, 2009
More tests, more symptoms, more randomness
I was reminded this week that Sarcoidosis is a systemic disease. I've been so focused on the lung issues, it hadn't really occured to me that anything else would be involved. Wrong there!
Sunday night I found a huge bruise and red rash on my leg. This was large enough and bruised enough that even I, in my craziest of days, should have noticed getting it. I was a little concerned, but since I had a doctor appointment the next day, I decided to just let it go and ask then. Turns out, with Sarcoid, this can happen. However, and there always has to be a however these days! The doctor wanted to run some tests to be sure it wasn't a blood clot forming in my leg. great.
So, more trips to the hospital, more time off work, more labs. After two days of tests, I got the very good news that it is not a blood clot. And it was good news for sure. But, then I thought about it. What it does mean is that my immune system is now going haywire in other places besides my lungs. I'll now start getting random rashes and bruises on my legs, and I'm sure have to have more tests in the future. Man, just when the steroids were getting my lungs better!
I talked with a friend this week who is a 3-time cancer survivor. She had to have a PET scan last week that she was first told was fine, but then got the second call from her doctor with the news that no, it wasn't clear, that some of her lymph nodes are lighting up (this usually means cancer activity). This woman is an amazing woman of faith and courage and grit. She tells it like it is, trusts God through all of it, but doesn't pull any punches. When we talked the other day, she was shaken. She'd just been feeling like she was getting past the cancer bit, and now found out she has to do it again, for the 4th time. I told her swearing is sometimes completely the right response!!
We talked again yesterday. She's met with her surgeon, who is working with her and her onco on a plan. She knows more what they are testing, and they are doing it in a way that will require minimal down time for the biopsy (always a good thing when you are trying to keep a job and fight health issues at the same time). She has turned it all over to God, with the request that He have just a little less faith in her ability to handle all things.
What we laughed most about, though, is that, when it feels like your body is just trying to undermine your life all the time, all you want to do is stop the nonsense. You know you'll beat it, whatever it is. You know you can take the treatments and the tests and the crud that goes with it. But, it's just having to do it. Having to set aside work and kids and husbands and friends to go to the doctor or the hospital and deal with this imperfect shell all the time. It's seeing your doctors more than your girlfriends. It's having a datebook filled in with appointments for tests and calling the insurance company and get getting a world-class education in reading medical statements....Enough!!!
My friend has decided to laugh at the randomness and stupidity of it all, even as she faces her 9th procedure in 9 years. She's my hero.
When I got home from talking with her there was a message from my surgeon saying I need to come in for a checkup. Of course.
Sunday night I found a huge bruise and red rash on my leg. This was large enough and bruised enough that even I, in my craziest of days, should have noticed getting it. I was a little concerned, but since I had a doctor appointment the next day, I decided to just let it go and ask then. Turns out, with Sarcoid, this can happen. However, and there always has to be a however these days! The doctor wanted to run some tests to be sure it wasn't a blood clot forming in my leg. great.
So, more trips to the hospital, more time off work, more labs. After two days of tests, I got the very good news that it is not a blood clot. And it was good news for sure. But, then I thought about it. What it does mean is that my immune system is now going haywire in other places besides my lungs. I'll now start getting random rashes and bruises on my legs, and I'm sure have to have more tests in the future. Man, just when the steroids were getting my lungs better!
I talked with a friend this week who is a 3-time cancer survivor. She had to have a PET scan last week that she was first told was fine, but then got the second call from her doctor with the news that no, it wasn't clear, that some of her lymph nodes are lighting up (this usually means cancer activity). This woman is an amazing woman of faith and courage and grit. She tells it like it is, trusts God through all of it, but doesn't pull any punches. When we talked the other day, she was shaken. She'd just been feeling like she was getting past the cancer bit, and now found out she has to do it again, for the 4th time. I told her swearing is sometimes completely the right response!!
We talked again yesterday. She's met with her surgeon, who is working with her and her onco on a plan. She knows more what they are testing, and they are doing it in a way that will require minimal down time for the biopsy (always a good thing when you are trying to keep a job and fight health issues at the same time). She has turned it all over to God, with the request that He have just a little less faith in her ability to handle all things.
What we laughed most about, though, is that, when it feels like your body is just trying to undermine your life all the time, all you want to do is stop the nonsense. You know you'll beat it, whatever it is. You know you can take the treatments and the tests and the crud that goes with it. But, it's just having to do it. Having to set aside work and kids and husbands and friends to go to the doctor or the hospital and deal with this imperfect shell all the time. It's seeing your doctors more than your girlfriends. It's having a datebook filled in with appointments for tests and calling the insurance company and get getting a world-class education in reading medical statements....Enough!!!
My friend has decided to laugh at the randomness and stupidity of it all, even as she faces her 9th procedure in 9 years. She's my hero.
When I got home from talking with her there was a message from my surgeon saying I need to come in for a checkup. Of course.
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