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Testing is DONE!

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#1 RobinAustin


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Posted 11 June 2008 - 01:37 AM

Hey everyone! It's been a while since my first post some months ago ... finally finished up all my tests to see exactly what parts of me are affected by the sclero. Heart is fine, gastro is fine ... lungs not so fine. CY scan showed some spots that my pulmonologist thinks may be active sclero and the PFT showed a restriction in lung function. Apparently my lungs are small too ... my blood oxygen was fine though!!! Im scheduled for a bronchoscopy on Monday and my Dr. said something about starting a "panel" of drugs next week ... he used the words noxious and toxic to describe them ... WHAT AM I GETTING IN TO???? Advice please ...
Scared in Austin

#2 janey


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Posted 11 June 2008 - 02:16 AM

Thanks for the update. Thrilled to read that the heart and digestive system are good. Sorry that the lungs are suspect. I'm certainly no doctor, so please verify this information and all information provided with your doctors. It sounds like they may be suspecting pulmonary fibrosis since their diagnosis is being made based on a scan and pft. We do have a section on pulmonary fibrosis and its various treatments. I have a mild fibrosis that was initially treated with oral cytoxan, but that was too toxic for me so I was put on cellcept. I have handle that quite well and my lungs have shown stabilization as well as some improvement.

The main thing with lung involvement is to catch it early and get it treated. Sounds like that is the case. I'm glad you have doctors that are being so thorough and aggressive in helping you. Please keep us informed. We're here for you!

Big Hugs,
Janey Willis
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#3 RobinAustin


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Posted 12 June 2008 - 03:42 AM

Thanks Janey ... right now I'm trying to research all the drugs they could potentially recommend to me next week ... I'm not good with nausea (i know, no one really is). I've been emetophobic (an extreme phobic response to vomiting or nausea) since my early 20's. I haven't vomited since then and I'm now 43. I'm afraid I won't be able to make myself take a medication that could make me sick like that. Pain, lethargy and anything else I can handle but ... just not that. This has always been my worse fear growing up .. that one day I'd contract something life threatening that requires a medication that makes me sick to my stomach ... REALLY panicking here. I noticed that methyltrexate and cellcept don't seem to make folks as sick as some of the others so if they recommend one of the more toxic ones I'm going to ask if we can start with the ones that I'm comfortable with ... I might be digging my own grave but it's all I can manage right now.

#4 barefut


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Posted 12 June 2008 - 03:42 PM

Hi Robin,

I'm right there with you on the vomiting thing - I didn't know there was a name for it! I don't remember the last time I actually vomited but I have had plenty of nausea that made me wish I could so I would feel better- but I just couldn't
It's like I will myself not to because the last time I remember vomiting I thought my head would explode and my eyes would pop out :blink: - graphic, sorry but no exaggeration.

Anyway, I replied to your post on medications but will mention here too that I have had good luck with Cellcept.

Good luck to you!

#5 jefa


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Posted 12 June 2008 - 10:11 PM

I am mildly emetophobic. It doesn't manifest in some of the more severe anxieties like being afraid to eat certain things because I 'might' throw up, but I do make every effort to avoid the possibility. I can remember people saying, "Make yourself sick, you will feel better after," and I would cower at the thought. I can't handle being around someone else who is sick and will turn the tv off if they get graphic (which seems to be more and more these days).
Warm wishes,

Carrie Maddoux
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