Comments on: My Experience with BHD http://www.bhdsyndrome.org/forum/living-with-bhd-syndrome/my-experience-with-bhd/ Research and Support Fri, 10 Feb 2012 09:25:02 +0000 hourly 1 http://wordpress.org/?v=3.1.4 By: Angelina http://www.bhdsyndrome.org/forum/living-with-bhd-syndrome/my-experience-with-bhd/comment-page-1/#comment-796 Angelina Sat, 09 Apr 2011 07:38:20 +0000 http://www.bhdsyndrome.org/?p=2481#comment-796 I was diagnosed last year with BHD! Along with my 2 year d daughter. I had my thyroid removed in Oct. 2010 because of a rare cancer! Since then I always feel tired, irritable and weak! I'm not sure if it's this condition or because of my thyroid being gone. Either way I'm scared and frustrated! I don't know much about it, but what I have read most hasn't happened to me. So I don't know if I should feel blessed or anxious for the future! Also what does this mean for my baby??? Any advise will help! Or just a though so I know I'm not alone!! Thank you I was diagnosed last year with BHD! Along with my 2 year d daughter. I had my thyroid removed in Oct. 2010 because of a rare cancer! Since then I always feel tired, irritable and weak! I’m not sure if it’s this condition or because of my thyroid being gone. Either way I’m scared and frustrated! I don’t know much about it, but what I have read most hasn’t happened to me. So I don’t know if I should feel blessed or anxious for the future! Also what does this mean for my baby??? Any advise will help! Or just a though so I know I’m not alone!! Thank you

]]> By: Cassandra http://www.bhdsyndrome.org/forum/living-with-bhd-syndrome/my-experience-with-bhd/comment-page-1/#comment-163 Cassandra Thu, 02 Sep 2010 16:46:57 +0000 http://www.bhdsyndrome.org/?p=2481#comment-163 Thanks for sharing! How did your CT scan go? I can defiantly understand your frustration, but at least now you may have some answers as to why this is happening to you. Do you have any other family members affected with any other symptoms? Did they remove a portion of your right lung to prevent it from collapsing? I just found out I've been referred to a new doctor to review my BHD for long term follow up. I have the appointment in a couple months. Hopefully they are able to give me more information about BHD; it seems when I previously talked to doctors about it, they have no idea what I'm talking about. Thanks for sharing! How did your CT scan go? I can defiantly understand your frustration, but at least now you may have some answers as to why this is happening to you. Do you have any other family members affected with any other symptoms? Did they remove a portion of your right lung to prevent it from collapsing?
I just found out I’ve been referred to a new doctor to review my BHD for long term follow up. I have the appointment in a couple months. Hopefully they are able to give me more information about BHD; it seems when I previously talked to doctors about it, they have no idea what I’m talking about.

]]> By: Yvonne http://www.bhdsyndrome.org/forum/living-with-bhd-syndrome/my-experience-with-bhd/comment-page-1/#comment-162 Yvonne Thu, 26 Aug 2010 22:40:21 +0000 http://www.bhdsyndrome.org/?p=2481#comment-162 I began having spontaneous pneumothoraces when I was 23. I am now 35. I had 3 on the right side and on the fourth collapse it was decided that a small piece of the right lung would be removed. I was pretty well good to go after that. Then, my left lung started up. Only once have I had to have the left chest tubed, however, I have had several collapses that resorbed. Up until a week ago. It had been three years since my last collapse. I went to the ER and they saw nothing, but of course I knew it was there since I had the air leaking around the chest cavity. It too resorbed on its own. I decided that Ineeded to see a pulmonologist. Two days ago she had me get a chest x-ray and a lung function test. When she returned she tol me that I may have BHD syndrome. She explained that I would need to have a CT scan done to look for cysts. The lung function test must have been too close (2 weeks) to the last collapse, because the force applied during the test collapsed my lung again! Grrr. Tomorrow is the scan. I guess I am a bit frustrated because no one in the past had thought it was strange that I kept having these collapses for no apparrent reason. I began having spontaneous pneumothoraces when I was 23. I am now 35. I had 3 on the right side and on the fourth collapse it was decided that a small piece of the right lung would be removed. I was pretty well good to go after that. Then, my left lung started up. Only once have I had to have the left chest tubed, however, I have had several collapses that resorbed. Up until a week ago. It had been three years since my last collapse. I went to the ER and they saw nothing, but of course I knew it was there since I had the air leaking around the chest cavity. It too resorbed on its own. I decided that Ineeded to see a pulmonologist. Two days ago she had me get a chest x-ray and a lung function test. When she returned she tol me that I may have BHD syndrome. She explained that I would need to have a CT scan done to look for cysts. The lung function test must have been too close (2 weeks) to the last collapse, because the force applied during the test collapsed my lung again! Grrr. Tomorrow is the scan.

I guess I am a bit frustrated because no one in the past had thought it was strange that I kept having these collapses for no apparrent reason.

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