hi it's okie carol

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/14/2013 6:01 AM (GMT -6)   
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

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/14/2013 12:39 PM (GMT -6)   
My aunt has PF. It's not a nice illness. She's had it for many years and has a fourth of a lung left.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/14/2013 3:36 PM (GMT -6)   
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
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/14/2013 8:36 PM (GMT -6)   
Hey Carol:

Thanks for the update, even though I already new the update LOL. You know I don't have much to offer as far as treating the PF. I would agree that you need to see the pulmonary doctor and get them to go over exactly what you need to do to help with your breathing.

As far as your AI issue, well I think you need to see the Rheumy and ask a lot of ?'s. Wish I could be of more help but I'm at a total loss of what to recommend these days.

Hang in there and I'll be in touch soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/15/2013 11:00 AM (GMT -6)   
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)


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 541
   Posted 11/15/2013 11:30 AM (GMT -6)   
Hi Carol,

I see you are back in Arizona. I am in Mesa. I found out last year that I have pulmonary hypertension and it is frustrating at times, too. My son's girlfriend has scleroderma and it is affecting her lungs too. She is only 32 years old. These Autoimmune Disorders do a job on our bodies.

Take care and feel free to pm me if you would like.

Mary Ann

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/15/2013 1:57 PM (GMT -6)   
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

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 11/16/2013 10:06 AM (GMT -6)   
Hey Carol. It's good to hear an update from you, even if it's bad news. I remember that you were talking about moving to AZ and I hope you're enjoying it. I only lived in AZ two years, but it became one of my favorite states.
 
I hope you continue to post here! yeah Love, Donna
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, diastolic heart failure, GERD, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator
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