hi it's okie carol

Just thought I would check in with an update. I know its been ages but I wanted to let you know I am still here. I found out sometime back that I have systemic sclerosis, scleroderma. it has left me with calcium deposits and pulmonary fibrosis, I'd like to get some info on the PF, I know it's very serious but if there is anthing you can tell me about it I  would appreciate it.

thank you very much

carol

Hi Carol, I also have scleroderma. I was found to have mild pulmonary hypertension and see a pulmonologist on a regular basis. Do you go in for regular CT scans and all the breathing tests? Last year during a routine visit, it was discovered that I had cancer in my right lung. The lower lobe was removed. I do understand what it is to have shortness of breath. I continue to exercise daily. I have seen some improvement.

I would sit down with your doc and ask him to explain the nature of your fibrosis and what you can expect, and what exercise if any would be helpful. Wishing you the best :)

Hugs, Robin

Hi everyone, I just wanted to thank you all for your input. Couchtater I am so sorry to hear about your aunt. that doesn't give her much to work with that's for sure. I had a CT scan done less then 2 months ago and an xray done 2 days ago. I already knew I had PF because you are extremely lucky if you have "sine" scleroderma and not have PF. at least 90% of the people with scleroderma have lung involvement. I've been on o2 since about 2002. It's actually a good record. Robin I agree I was tested for a transplant but then they had me do PULM therapy and it truly did help me a lot. It kept me out of the hospital for quiet awhile. I know that my lungs are scared from all the pneumonia, inflammation scleroderma. my bunches of grapes look more like raisins.
My pulm put me on singular for asthma?? and this s going to be the second time I've seen my rheumy since I moved back to Arizona. So I need to set and make a list since we have no rupour.
Barb yes I will keep you up to date about what's happening. I know its hard to kep up with things LOL I mean we only speak once a day. Maybe you can help me put to get a list together.
well everyone thankyou so much for responding to me.
carol/okie

Post Edited (okie) : 11/15/2013 10:04:17 AM (GMT-7)

Hi Mary Ann, I didn't realize you were in Mesa, I live right on the boarder of mesa and tempe, baseline and price rd! Yeah I started getting sick when I was about 40 but I didn't know why. most people with scler. had lung issues. I just got a call from my doctor's office shortly after I posted here and they want me to go have a CT scan done. They found a nodule in the upper lobe of my right lung. I'm not gonna take it to seriously it took them 3 days to get the x-rays and they told me I could come in Monday to pick up the orders to get the CT done. I'm sorry you have problems with PH and it seems that scler. used to be so rare but now it's all over the place. It's really good to hear from you. I'lll catch up to you soon.Thanks for the shout out!
carol