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My Visit With Rheumatologist Yesterday

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#1 Clementine


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Posted 19 April 2007 - 11:36 AM

I wanted to let everyone know my Dr. told me he thought of me as a Cellcept success story. He said this because he believes I am stable. He did say the lung disease was active, but I've not gone out of a 10% range with my PFTs and my CT scans appears the same as all the other times.

I asked the Dr. if I should ever expect joint problems that typically comes with systemic sclerosis (notice, I am using the proper name!) and he said he thinks what I have is what I have....meaning that he does not think I'll get more symptoms. I have sine sceroderma though, which means without skin involvement. This was good news because it seems like everyone else has major pain. My heart goes out to you all.

One thing he said that was not positive was that he does not think he can do anything about the full and short of breath feeling I get when I eat. I take REglan and he thinks this is the best medication out there. He basically told me to live with it. This I can do...:)

My goal now is to get in tip top shape so that my lungs and heart are as healthy as they possibly can be.

I hope everyone's having a good day and feeling well.

#2 Heidi


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Posted 19 April 2007 - 01:10 PM

Hey Jen,

Thanks for the update. Sounds like good news regarding being a Cellcept success story and that your lungs seem stable. It is so good to hear wonderful news like that! Congrats! I am sorry that he can't do anything for the full feeling/short of breath you get after eating....I am glad that the Reglan does seem to be helping some with this and it is not incapaciting to you.

Warm wishes,

#3 Sweet


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Posted 19 April 2007 - 02:08 PM

Jen! All in all that sounds like a great visit! Congrats.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 nan


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Posted 19 April 2007 - 02:12 PM

That sounds great! I can empathize about the eating. My digestive tract has been pretty messed up with scleroderma.

#5 janey


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Posted 19 April 2007 - 03:09 PM

You go girl! Hope the Cellcept continues to work for you.

We all just learn to live with a lot - don't we? :D

Big Hugs,

#6 peanut


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Posted 20 April 2007 - 05:26 AM


peanut head

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Jessica


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Posted 20 April 2007 - 06:24 AM

So is it important to be in great physical condition or to exercise to make your lungs and heart stronger? If you do this then does it make it that much harder for the disease to take over?

#8 Shelley Ensz

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Posted 20 April 2007 - 07:03 AM

Hi Jessica,

Yes, it is extremely important to get as much aerobic and upper body strength building exercise as possible (for some people it is not possible to do much at all) with most lung diseases. However, it needs to be done within limits and with testing to make sure the effect on oxygen saturation levels is acceptable. That is why pulmonary rehabilitation is usually recommended for lung patients; it teaches how to best live with and make the best of things.

My husband has severe asthma and COPD, on 5 liters of oxygen all the time, and he tries to do at least a 20-minute walk or more every day, plus a sit-and-be-fit class for upper body strength twice a week. And, he stays as active as possible, even working as a part-time restaurant greeter.

However, he does all that under the advice of his pulmonary doctor, after having had pulmonary rehabilitation, with an oximeter, etc. It can worsen things to just take off exercising without proper instruction, saturation monitoring, and training in how to handle shortness of breath situations, etc.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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