barefut

Checkups tomorrow

13 posts in this topic

Tomorrow morning (EARLY!) I am meeting my new local sclero buddy to carpool to our rheumatologist and pulmonologist appointments at Virginia Mason in Seattle. We both have the same doctors. and managed to get back to back appiontments with both of them.

 

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 :P

 

Anyway, I am looking forward to spending time with my new friend. She's a sweetie. Talk to y'all later.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Barefut,

 

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!

 

Karen

Share this post


Link to post
Share on other sites

Hi Barefut!

 

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?

 

Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

How blessed you are to have these appointments together! I would love to be able to even meet some of you or to have someone in my area that I could talk to who could really relate to what we are going through. I used to get out of breath just coming up the stairs but it seems since I have been on the cellcept that my lungs seem to be better. My sister said that I don't seem to be "out of breath" when we are on the phone. She said she can tell a difference in the way I talk so something must be working.

 

Good luck at your appiontment and I hope you get all good news!

 

Warm hugs,

 

Peggy

Share this post


Link to post
Share on other sites

Barefut

 

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.

Share this post


Link to post
Share on other sites

Well how special is that?! I think that is wonderful you are going together. I would love to have someone that lived by me that truly got it! But I have all of you and the postings here and the constant email contact is the next best thing!

 

Looking forward to hearing the outcome of your appointments.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thanks Guys,

 

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!


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Glad to hear that things are holding for you and the treatment seems to be helping. I bet you are relieved.

 

Take Care

 

Jensue

Share this post


Link to post
Share on other sites

So glad to hear your appointment went well and you got good news. It seems that the Cellcept is working. As I said earlier, I think it's working for me too as I don't seem to be as out of breath. I can imagine it's hard to get off the Prednisone. I was on it for a very short time and had a reaction to it so I had to stop taking it. But I have seen so many posts that makes it sound so very hard to quit taking it and the health ramifications after its no longer in the system. I wish you luck on it. Again, congrats on the good news!

 

Warm hugs,

 

Peggy

Share this post


Link to post
Share on other sites

Ok....don't laugh but I planned to reply & can't recall if I did or not...& since it isn't posted immediately & it has been 5 minutes... I'm not sure so sorry if there ends up being two...haha.

 

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. doc 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.

Share this post


Link to post
Share on other sites

Barefut,

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.

 

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)

Share this post


Link to post
Share on other sites

Great news Barefut! Time to celebrate! You held steady, which in my book actually means improvement. Not losing ground means you did good. Did you grab a bite with your appointment buddy? It must be super to be able to go to your appointments with someone. Maybe next time you can make it a special spa day or go out somewhere fun. We have to catch all the good stuff that we can - especially when you got good news. Status quo is always good news!

 

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.


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now