teeceekg

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Everything posted by teeceekg

  1. Has anyone experienced chronic episodes of pericarditis with their scleroderma? My husband is currently battling this and up to now they've never drained the fluid just gave him Indocine and pain meds. This time the fluid based on CT scan is substantial and we have a repeat echo tomorrow to better evaluate it. He is just miserable with each episode and it takes so much out of him. Just curious if anyone else is having this problem. TeeCee
  2. Hi Janey - Thanks for the info. Yes, you are right anything pertaining to the heart is scary. They actually drained his cardial effusion yesterday because he was in cardiac tamponade. They removed 700cc of fluid from around his heart. It was beginning to collapse his heart...no wonder he couldn't breathe. I'm hopeful that the fluid doesn't accumulate again and once the pathology of the fluid comes back then they'll have a better idea of what may have caused it. Thanks again for the info. I have found this discussion board to be very helpful in a number of ways. I'm glad I found it. Happy Thanksgiving Everyone!! TeeCee
  3. Hi Heidi, So we're neighbors! Yes, my husband has seen a scleroderma specialist about a year ago. I didn't care for him at all - he was very arrogant and talked down to us and didn't really provide much help. I was very disappointed to say the least, especially since I was so excited to find someone in town who was well known for his work with scleroderma and in transplant patients as well. My husband's oncologist has done very well with his treatment up to this point and he has always brought in other specialist as problems arise. Is there a specialist there in Lincoln you see or do you know of one Omaha by chance? TeeCee
  4. Hi Heidi, Thanks for the welcome. We live in Omaha, NE. You are so right, it is hard knowing we traded one disease for another one. It's also hard because from what I'm told even though my husband does have scleroderma since it is secondary it is a some what of a different form and I'm not quite sure what that means exactly. We just went to a pulmonologist today to evaluate his new lung problem going on. He also has pericarditis right now and we found out today that the pericardial effusion has doubled in size from last week. They'll repeat his echo this week and decide what they'll do - either drain it or watch it. We still aren't even sure what has caused the pericarditis as well as the pleual effusion he also has. It's difficult to know who to seek out for answers since all of this is caused from his transplant. It seems like the medical field is surprised at even his existence therefore they act as if we should just be thankful that he is alive. Although we are of course extremely grateful for that he deserves a level of quality of life. I'm hopeful that this week will bring some answers. TeeCee
  5. Hi everyone! I too am new to this forum but I am finding in a short amount of time it is quite informative and supportive. My husband is the one with systemic scleroderma which was induced by a stem cell transplant for (AML) acute myleogeneous leukemia. He had his transplant 3 years ago and began with symptoms of scleroderma shortly after before hitting his 100 days after transplant. The progression has been severe and many treatments have been tried without much success. He has restrictive lung disease and some cardiac involvement as well. We thought having cancer was bad enough. We didn't realize that he'd be exchanging one disease for another just as severe. My husband and I have been married for 22 years and have 2 children. We live in Nebraska and have seen many different specialists throughout this whole ordeal. These past four years have certainly been a challenge but we just keep on fighting! TeeCee