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Hi Friends,


I saw my Pulmonologist yesterday. Good news: my PFTs while abnormal are staying stable for 14 months now so my ILD is still mild. YEA! However, after the 6 min. walk my oxygen sat. dropped from 98% to 92%. He wasn't happy with that. So continue the tests at 6 mo. intervals.


He reviewed & compared my echos from 2 years. ago and is sending me to a cardiologist for 3 reasons. The left ventricular ejection is reduced from 60 to 40%; we need to find out what the report means my the "left ventricular dysfunction is global", and why there is no right dystolic pressure given.


Now for the part my sister (who drives me since I"m not driving now when hubby can't take off work) and I found hysterical. On the way out of the clinic (huge at a major university teaching hospital), we happen to bumb into my rheumatologist. Hellos are exchanged and she tells me how wonderful I look, I look younger and asks me if I've had botox!!!!!


I see her tomorrow for the last time, I might add. I haven't been happy with her for some time for many reasons. Our insurance company is changing and this hospital does not accept this company. In the case of the rheumatologist, I don't mind. Every other dr. I see there, I am very, very very sad. They are all wonderful. They have all offered to write letters to send with me for the next dr. etc. I am going to continue to see my neurologist, however, and simply pay the out of network difference.


The disease he treats for for (Hashimoto's encephalopathy) is so rare and complicated and he knows me and my history so well that I do not want to change. The idea of starting over is enought to throw me into an ultra major flare of everything!


Anyhow, enough from me for tonight. Sweet dreams or at the very least some type of sleep for us all!


xoxo emmie

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Thanks for the update. It's good to hear that your PFT's are stable after 14 months! That's marvelous! I hope your 6 minute walk improves by the next test.


WOW - having to change all your doctors should be interesting. I know what you mean - some you won't miss and some you will. Well, I hope you find some great replacements for them all. As you already know - trusting your doctor is so very important. Let us know what your cardiologist says. Will you be seeing a new one?


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Great News of your pft's!!! Just keep doing the 6 min walk and hopefully next time it will be stable as well. I don't think I could change all of my dr.'s at once since I have been with them for so long. Good luck with changing and I hope it is a smooth transition. I can't believe she asked if you had BOTOX!!! HELLO??!! No wonder you don't mind changing rheumatologist's.


Please let us know what you find out about your echo. I am having another next month.




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Emmie,


Thanks for the update!! That is wonderful news about your PFTs....I sure hope the 6 minute walk improves for you. And, please let us know what you learn when you see the cardiologist.


Wow! I can't believe you have to change all of your doctors. I sure hope you can find a good rheumatologist! I can not believe she thought, and then even asked you, if you had had Botox treatments. Does she not get it?? Does she not know what scleroderma does to the skin? Oh, my...I am just aghast!!! Thanks for the chuckle!!


Warm wishes,


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