Posted 04 August 2008 - 06:21 PM
I am a little nervous about my PFT (always am). Last time my diffusion dropped 10 points and I've been having bouts of SOB lately.
Does anyone else get short of breath just talking on the phone? I was watering plants at the same time so maybe my lungs just don't like multi-tasking
Anyway, I am looking forward to spending time with my new friend. She's a sweetie. Talk to y'all later.
Posted 05 August 2008 - 12:44 AM
That's great that you have a buddy to go with. That has to make it easier, especially since it's someone that totally understands from an illness standpoint. It'll be completely different than having a family member there. Let us know how it went. Sending you good vibes.....
PS: I know how you feel. The PFT scared me too. Good luck!
Posted 05 August 2008 - 06:07 AM
What a great deal...that you and your sclero buddy have gotten this accomplished! I hope you two are able to take in at least one meal, once your app'ts are done!
As to the PFT you're scheduled for...I'm sorry you had dropped 10 pts on your last one....did that take you out of your "normal range"? I hope not.
My hubby has COPD and was concerned when his (PFT) showed a 12 pt drop since his last one. Yet, when he asked his pulmo about it, he was told that he's still within the normal range.
Have a good trip tomorrow and let us know how everything went?
Posted 05 August 2008 - 11:14 AM
Good luck at your appiontment and I hope you get all good news!
Posted 06 August 2008 - 09:08 AM
I also get short of breath while talking on the phone.It happens alot after talking for lengthy periods.At the same time I get this sharp pain on both sides of my lower jaw.I haven't been diagnosed with scleroderma,but since last year I've been dealing with interstitial lung disease.
Posted 06 August 2008 - 11:18 AM
Looking forward to hearing the outcome of your appointments.
Posted 06 August 2008 - 06:20 PM
My appointments went well. My Pulmonary doctor always makes me feel like I could climb Everest by the time I leave his office. Says I'm doing great and tolerating Cellcept exceptionally well. My PFT was same as 6 months ago so I'm holding steady.
Rheumy says, stay on course with 2000mgs Cellcept and try to get the pred down to 5mgs again (on 10 mgs now) *sigh* I will try.
Neither of them gave me any flack about my weight or exercising this time. I have put on 10 pounds with the pred increase - could stand to lose 75. AGH! That looks SO BAD written down!
Posted 07 August 2008 - 03:31 AM
Posted 07 August 2008 - 05:21 AM
Posted 07 August 2008 - 08:32 AM
That is so awesome that there is someone that is near by that you can connect with in person! I'm glad your appt. went so good, steady is super! Does the diffusion test tell the doctors how well your lungs work with the diffusion of gases in & out of the lungs etc.? I wondered because I asked my reg. doctor if there was any such thing as something affecting the gas diffusion in my lungs & maybe that is why I smell ammonia (in my nose only). He acted like it a rediculous idea & tested my lung capacity to show me there wasn't anything wrong with the gas diffusion.
Anyways....blah blah blah....haha. I'm excited for you that your lungs didn't change over the last 6 months. What is the predinisone taken for? When he says "try to get it down" does he mean you'd be ok on a lower dose & he's giving you permission to slowly work yourself down to a lower dose? Do you feel worse without it? Sorry all the questions.
Posted 07 August 2008 - 04:44 PM
I'm so glad that your pfts were stable. Stable is good. Did you doctor give you a reduction plan for your prednisone? Just take it slow. How was the drive with your buddy? I hope she had a good appointment as well. How fun having a sclero buddy to personally share your experiences.
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Posted 07 August 2008 - 07:08 PM
I usually go alone unless it is to be scoped and then my husband takes me but we can't very well go out and have a bite or celebrate if it is good news because then I am usually totally out of it. I am due to get botox through an endoscope soon I will be out of it, but as soon as I am up and running I plan on having a chocolate martini to celebrate (really test) my new free flowing intestinal tract.(I will of course, check with my doctor as to how soon it will be safe after the procedure - I know that I will not be allowed to drive until the anesthesia is out of my system so I can't drink during that period either!) It may be the first and last for a very long time, but I figure they use champagne to christen ships - I will use a chocolate martini to test out my new and improved sphincter.
Chocolate, It isn't just for breakfast anymore!