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kristi

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About kristi

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  1. This is fantastic info in terms we all can understand. Thanks a million! Kristi
  2. kristi

    PAH

    Thank you for the response. :) Sometimes I just get over anxious, and usually it turns out to be nothing. I have to trust my doctors and be glad when my tests come back good. I have to stop second guessing everything or it will drive me crazy! Thanks again for everyones reassurance and encouragement here. Kristi
  3. kristi

    PAH

    I have read so many varied things about what percentage of people with systemic sclerosis (either limited or diffuse) get PAH. I have read anywhere from 15% - 65%. That is a big range. Also, the onset time of PAH from diagnosis of scleroderma varies from 1-15 years. What scares me is that it goes undiagnosed a lot of times and will they catch it early enough. Is the yearly echo and PFT enough? Should I consult with a pulmonologist or a cardiologist or wait until my rheumatologist refers me? What have any of you read about this or what do the doctors say? Kristi
  4. My sister has LUPUS and I have CREST. There is no doubt in our minds that our auto immune diseases are genetic, however I thought that direct relatives of scleroderma patients could not get it. I thought I read some where that your children are at more risk to get an auto immune disease if you have one but I though it also said that you don't pass this particular disease (slceroderma specifically) on to your children.??? Apparently that is incorrect. Kristi
  5. Thanks for the helpful info. After reading more about it, I don't really think it is a very good idea for so many reasons. I also would not want to knowingly possibly pass on an auto immune disease to my children. Kristi
  6. Thanks for the info. My doctor says she is only going to repeat these tests once a year. I hope this is often enough to catch it early enough. They said my O2 sat was 98 at rest but they did not check it with exertion. Someone said theirs dropped from high 90's to low 80's after just walking a few feet. I also have an increased heart rate. I don't really cough that much. I want to believe that I am o.k. and be thankful. I guess I am just afraid because this goes under diagnosed frequently until it is too late and has already caused heart damage. Kristi
  7. Has anyone heard if it is o.k. to get pregnant and have children if they have CREST? I have had all organs checked and they are are normal. I am considering whether I should have another baby (first baby was before diagnosis). Can it trigger pulmonary hypertension or make my other symptoms worse? Kristi
  8. I just wanted to let you all know that my tests went well and they are all normal results according to my rheumatologist. I did have a question regarding the accuracy of the echo in determining the pulmonary artery pressure. From what I have read it isn't exactly accurate and the only true way to tell is by right heart cath. Even the tech that did my echo said it can be off by as much as 5mm. I also had a question about the "normal range" for pulmonary artery pressure. Some things I have read say 18-25mm is normal and some things say 25 is pulmonary hypertension. Mine was 24 on the echo and if it could be off by 5mm, my actual pressure could be as high as 29. I get so confused on this stuff, please help. Kristi
  9. WOW! Thank you all so much for the warm welcome! It is sad yet it feels good to know that there are people going through all of this with me. When you tell people that you have CREST syndrome or scleroderma, they have absolutely no clue what you are talking about. People don't even know what autoimmune disease or connective tissue disorder means. By the way my PFT, echo & barrium swallow is Thursday the 17th. I will post my results when I get them. Kristi :)
  10. Hi, my name is Kristi. I was just diagnosis with CREST. My sister has LUPUS (involving kidneys) and after participating in a LUPUS genetic study for her, they found a high positive ANA in me. I went to my general practitioner and they did another ANA and it was negative. I went to a Rheumatologist and she told me they have to specifically ask for the anticentromere pattern of ANA or they will not test for this rare pattern and that is why I got the negative result the second time. The rheumatologist repeated the ANA once more on me, specifically asking for the centromere pattern and it came back with a high positive of 1:1,280. She diagnosed me with CREST due to my raynauds and daily severe heart burn. I also have the beginning skin changes on my fingers. She ordered the lung PFT, Echocardiogram heart test and a Barrium swallow to check the condition of my esophagus. She thinks it is limited, not diffuse, so I guess I am lucky there. Any advice or encouragement is welcome. Thanks, Kristi
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