Hello, My name is Cassandra. I’m 24 yrs old and live in Winnipeg, Manitoba Canada. The first time myself and my family heard about the possibility that we may have BHD was September 2008. My brother (21yr. old at the time)was rushed to the hospital in severe pain, It was first thought it was just kidney stones, a few tests later it was confirmed he had kidney stones, and a tumor on his left kidney. 4 weeks later he had surgery to remove the tumor, all was successful and they we able to save about 50% of that kidney. It was a rare form of cancer. After discussing with his surgeon about my history with pneumothorax, (right lung 8yrs ago, and left lung 6yrs ago) he suggested we may have BDH, he sent us for genetic testing. My mother also has tumors/lesions of the hair follicles on her face. We (my four family members) went for genetic testing, but they will not confirm if we have BDH or not, the results were inconclusive. I was order to have a CT scan to see if there were cysts on my lungs, there were cysts and also an small nodule in my left lung. A few CT scans later and a needle biopsy (which resulted in my lung collapsing!) it was determined to remove it. March 8, 2010 I had surgery to remove 50% of my left upper lobe of my lung. The surgery and recovery went well, the results of the nodule/tumor was a rare form of cancer. I have since had more CT scans of my body and ultra sounds of my kidneys. All seems to be good so far. The follow up we have to continue with is regular ultra sounds of our kidneys and my brother and I go for CT scans/MRI yearly.
Does anyone have a similar history? Does anyone think it’s possible that my lung tumor is associated with BDH? I would like to determine if I have BDH 100% through genetic testing, does anyone have a suggestion on how to get defiant test results? Thank you for taking the time to read my story! I would love to hear any comments or questions.
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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.
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.
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