Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Everything posted by Ronald

  1. I went for an ECHO back in July, the finds (one of them) were Mildly elevated esitmated pulmonary pressures. Now does this mean I have to go for a right heart cath? That is the one test I dread. I have not been around for a while, I am depressed about tests coming back with problems. I suffer from depression. Have had it for many years. Just not in the mood to chat at times. Had to put my CT scan off till Oct and my Lung specialist off till early Dec.
  2. Thanks Shelley, that made me feel better.
  3. My finger ulcer has finally completely healed. It started in April. Now I have a new one on the same finger, not in the same spot, smaller but still painful. That ulcer was the worst one I ever had. The relationship with digital ulcers and PAH has been documented, I think I may have PAH. I had a ECHO and the heart doctor said there was some thickening on the vessels in the right side of the lung and heart. I hope I don't have to go for a right heart cath. I dread the use of a bed pan.
  4. Thanks for the words of wisdom Shelley. In Canada, well where I am located he have a number we can call, 811, they are registered nurses that can take all your symtoms and advise you what to do. They don't diagnose. Tell you if you need to see a doctor or go to the ER. They were very helpful when I was really sick with that intestinal virus.
  5. Jo, I feel great today. I remember back in 1992 my scleroderma specialist told me that people with autoimmune diseases get feeling of unwell, like aches all over and feeling like you are getting the flu. It sometimes lasts a few hours, or a day. But never more than a day. Sometimes I can't tell if I am getting sick or its just scleroderma acting up.
  6. I wonder here how many people some days feel like they are getting the flu with SD? My story, some days, I get really aching all over and feel like I am getting the flu. Then the next day it goes away. A SD doctor told me this is common, and she explained it was not just people with SD, but all diseases in this category. Anyone else experience this? I have it today, but hoping it goes away tomorrow, or else it could be the flu.
  7. All better from the virus I picked up. My CT Scan is set up for Friday September 18th and my lung specialist is set up for Monday September 21st. They are making me take another pulmonary function test (PFT) and X-ray of chest and then I see the doctor the same day. I had my ECHO done and the heart doctor called back to say that all was fine, except there was some thickening of the arteries to the lung, but he didn't seem too worried about it.
  8. Shelley, sorry for the delay in posting, been very sick with a intestinal virus. My CT scan is set up for early September.
  9. Thank you Shelley and quiltfairy yes I do worry a lot, been that way my entire life.
  10. Hi Jo, After some calls today I now have a Rheumatologist that specializes in SD. Have to wait for an appointment. Called my family doctor, they still have not sent the request in for the CT scan, they said there was never a request. I clearly remember talking about this with my doctor as I was concerned about the dye they use. My family doctors office is really bad for making mistakes.
  11. I am getting really worried that I may have PAH. According to my PFT, the one 2.5 years ago was: FVC 59% DLCO 60% My PFT in June of this year was: FVC 45% DLCO 44% Both summaries stated reduced DLCO could include pulmonary vascular disorder. Do any members here have any opinions from your experiance? I am still waiting for a CT scan and a SD, Lung specialist.
  12. Thanks Jo thats a relief.
  13. I am still waiting to get my CT scan of my lungs. Can anyone tell me if they use dye in an IV drip for the test? When I was in the hospital years ago I had to go for a test where they injected some sort of chemical for the scan, and I started to vomit as soon as I was injected with it. Got me worried about the CT scan I am going to have. Can you please share your experiences? Thanks
  14. Let me be devils advocate here. In my opinion we can't blame every heath problem on SD. I had kidney issues back in 1990, I was diagnosed with SD in 1987. After a 30 day hospital stay going through test after test, they did a biopsy on my kidney and it was determined that the kidneys were in no way related to SD. I gained 40 pounds of water and was really sick. I went on a chemotherapy and prednisone drug therapy for 6 weeks that put my kidneys into remission. I have been in remission since 1992. I also suffer from a severer case of obsessive compulsive disorder (OCD), I do not believe
  15. Jo, When I was young, a few years before my Raynauds diagnoses 1n 1984, I was very active, weight lifting, Marshal Arts, and rock climbing. I was in good shape, but once I got Raynauds, I could not rock climb or do Martial Arts anymore because of the pain in my hands and feet. I was a loyal Pepsi drinker and loved junk food like chips and chocolate bars, I always said that was the reason my SD progressed so slow, all the Pepsi and junk food. Having SD didn't bother me until this year when I had SOB. 2.5 years ago when I had my PFT and my lungs were at 59% it still didn't bother me, the SOB
  16. Jo, You have impressive lungs, surely not the normal compared to the general public. Most of the terms on my PFT are not the same as the ones you posted, the only one that is the same is FVC and TLC.
  17. miocean, The lab tech said my lung capacity was 45% it was classed as FVC. I don't know what TLC is, as she didn't mention it when I called her. TLC is mentioned in the upper image on this page, but I don't know what that is. See this page for results: Understanding your breathing test results.
  18. miocean, My SOB is unpredictable, last Saturday I went grocery shopping a lot of walking with a heavy basket, and had no problems. I work at a computer all day, so I get up and walk around to prevent blood clots. One day I walked around and lifted my legs up high like an exaggerated march for only about 10 seconds, and I was SOB from that.
  19. miocean, "Have you had a right hearth catherization to check for pulmonary hypertension?" No, I am still waiting to see a lung specialist. Wheels turn slow here in the health care business.
  20. Jo, My PFT lung capacity back in Jan 2013 was 59% and now its 45%. I don’t understand diffusion, here is the report can you make any sense of it?
  21. Jo, My number was the lung capacity. I am not sure about diffusion or what that is. My lung capacity back in Jan 2013 was 59%, now its 45%. That is FVC. What is your lung capacity?
  22. I just called the lab where I had my PFT test done, I wanted to know what capacity my lungs were functioning, they said 45%. I was not expecting that low of a number.
  23. Amanda, my heart doctor said he wants me to do exercise everyday; he doesn't want my muscles getting so out of shape that SOB will come on so easy. I don't think I am at the point for O2 yet, but we will see what the lung doctor says.
  • Create New...