Hello everyone, and God bless you all for your pain and struggles and the uncertainty that comes with this disease. I lost my beautiful 18 year old daughter to this monster on July 28, 1998. It came out of the blue and attacked her kidneys and her lungs. By the time it was diagnosed she was in ICU intubated and fighting so hard for her life.
Like the mother above at the end I did not know what to pray for anymore. I prayed for a miracle...and God gave that miracle to my child...he took her home to live in a place without pain and fear...she had fought so hard and for so long her oxygen levels were so low...below 80 for long periods of time even on 100% oxygen...there is no telling what her life would have been like if she had survived the acute stage...her death tore our family apart and the uncertainty of this disease the rareness of it was extremely difficult to accept.
All I know is I wonder each and everyday about the future of my surviving child...I too have been told it is not heriditary....but rather congenital...meaning we are born with a predisposition to this disease. That is not much comfort to me....everytime my surviving daughter gets a cold or a cough I have her at the doctor...this is a terrible disease that seemed to strike my child from no where...
I wish you all the best and I am pleased to read that more is known about goodpastures and that more and more people are surviving this disease...this is a blessing...
For my Helena it was not soon enough...and the doctors here in Ontario Canada were not ready for what she presented and it seemed the treatment at times was far worse then the disease itself and it seemed they were grasping at straws and guessing on what and how to treat her....I sure hope they know more now and do a better job..
Miss you Helena..
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