Posted by Janice M. Voak
on 1/11/2006, 7:55 am, in reply to "Re: Kartagener's Syndrome"
207.78.118.101
Hi Rayna and all: I am a 62 year old woman with Kartagener's syndrome, complete Situs Inversus. I was 54 years old, and had already had my children, before I knew what was causing so much sickness. I seemed to get every cold and such that came along. I have had pneumonia about 16 times. I live on 4 inhalers, Theophyllin, and sometimes a breathing machine. You were speaking of having children. I have four and never had a minutes trouble with having them and none of them have my birth defect. One of them had asthma, but not Kartagener's Syndrome. So, don't worry about that, or the fact that it will cause any problem with your having children. I have been trying to research it and see how many people actually do have it and let them know that it is a problem, but not really that bad to deal with. I have contacted MCV hospital and several places. The hospital that I was in when they found it, has release forms from me so that they may use my tests and xrays for teaching and training their doctors and nurses. I do wish you well and hope that you will live and do well with this. As I said before, I have lived almost a complete normal life, except that I have to keep medication and my rescue inhaler close by my side, so that I can breath freely. I feel that my breathing, sinus and all the things that go along with it, have gotten worse as I grow older, but I have a very good outlook on life and I am sure that I still have plenty of years to go, if I take care of myself and do what my doctors tell me to do. As I said before, I have lived almost a complete normal life, including children and grandchildren, except that I have to keep medication and my rescue inhaler close by my side, so that I can breath freely. I do visit the doctor often and she works with me, if I need medication or antibiotics, she will fill them for me so that I don't have to run to the office all of the time. She keeps a close watch on my heart, because they say that the difficulty in breathing can cause a problem with the heart. So far, it has not. She requests that I visit about every 4 or 5 months, so that she can keep track of the problems that I have. She also went to a conference and brought back papers with exercises that I can do in the morning to loosen my breathing and tubes. I feel that my breathing, sinus and all the things that go along with it, have gotten worse as I grow older, but I have a very good outlook on life and I am sure that I still have plenty of years to go, if I take care of myself and do what my doctors tell me to do. It would be nice to hear from others who need to ask questions or talk with someone who has had a lifelong experience with this. Thanks for allowing my post. Janice M. Voak, blondie@bealenet.com
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