Story about Birt-Hogg-Dubé syndrome .

My Daughter I gave up for adoption told me I might have BHD

Mar 15, 2017

By: Kathy


I am 60 and was diagnosied with Cystic Fibrosis I did not do the whole panel for CF and I have been at a CF Clinic for 10 years now ,I gave my daughter up for adoption when she was a small child I was so sick and could not care for me or her .I have been sick all my life and under weight as a kid My mother married three times my dad passed when i was 13 and i went into foster care I got sick and had to have my gall bladdr removed at 20 .

My first pneumothorax was 29 and tat was my right side I had chest tube and then had 6 more on same side ,this was over a 10 year old peoride .Then I had bulla on my lower left lung and they removed that I was good for about 1 year then i had 9 small pneumothraxs left side I had Pleurodesis on both sides of my lungs and have had many infections with both lungs

I have not done genetic testing for BHD and have no plans at this time I am so sick of Doctors and testing I just am woren out I had a Ct scan and they found a cyst 3.7 cm on my left kidney and 5.3 cyst on my liver and the doc said it is fine come back in 1 year it looksl ike a Bosnic F2 on CT scan I am so much pain going for a second opion in early April

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