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| My most recent chest x-ray |
My mother was in labor for 12 hours because of me, I'm her first so it must have been very difficult for her. It shouldn't have gone for 12 hours if not for my grandmother insisting I must be delivered normal, a c-section should've been done as I have already started to drown in my mother's womb. Water entered my lungs as I have drank lots of it inside the womb. I was struggling to live for 2 weeks. It took 3 chest x-rays before the doctors' realize I have situs inversus, they thought that the x-ray machine or the technicians must have been wrong. I was told it is one in a million case here in the Philippines, and the Internet says it's 1 in 10000 worldwide.
As a child I always have nasal mucus or phlegm. My folks thought it was a severe allergy and that I have asthma. Meds after meds, nothing helped me until the doctors told my parents to stop the meds and let the child outgrow her condition. But I never did. I have suffered brutal bullying because of it. I was so used to it I wasn't aware that my mucus just keeps on looking out of my nose. I was ashamed to blow my nose or cough out the phlegm because my peers will mind and look disgustingly at me, saying things like I have tuberculosis. I have to hold it in and endure my breathing trouble to save face. Basically I almost have no social life, my friends come and go in so little time. Maybe my social life was affected because I wasn't really confident of myself. All of my school life I was always suffering from fatigue and fevers. I got tested for tuberculosis for a few times in my life but the results always come out negative.
When I started work it is still the same, people won't understand. After quitting two jobs because of fatigue and fevers, I decided to go to the doctor again. Of course I have chronic sinusitis, because it's been going on for years. Why didn't I think of that? We endure pain and discomfort, we don't go to doctors. We are medically ignorant. The doctor does not advice sinus surgery because chances are high that it will come back. First I was prescribed the max dosage of Augmentin for about a month. Nothing's change a bit. Clarithromycin was my next med for a month too. Nothing. Out of curiosity, I started to search for situs inversus or dextrocardia, looking for signs that it has something to do with my sinusitis. I found out that some people who are borned with situs inversus has primary ciliary dyskinesia or Kartagener Syndrome.
I still wasn't sure, no lab tests are available here in the Philippines to prove I have it. I went to Dr. Ramon Lopa, an ENT specialist in Makati Medical Center, and without tests, he confirmed I have it. A lot of doctors here in the Philippines haven't met an individual with situs inversus, it's just another medical condition in a book to them. It is that rare. I guess the medical interns in PGH are lucky because they already met one, and that's me. They are amazed and even marvel about their find in me, when I have been suffering all my life because of it. How ironic. Once a school doctor is assessing me, and he has been searching for my heart beat for about 5 minutes, I totally forgot to tell him first, I've been oblivious about my condition for a few years. Dr. Lopa recommended surgery to enlarge the drainage of my sinuses, but because of financial reasons I backed out. To this day I am still enduring my condition and occasionally using a ketchup bottle with saline solution to irrigate my nose.
Suggested solution by PGH ENT specialist for nasal irrigation:
1 ketchup bottle of clean water
1/2 tsp of salt
1/2 tsp of baking soda
Mix salt and baking soda with the water.
I still don't know anyone here in the Philippines who has situs inversus totalis or dextrocardia. If not for fiction and movies like Ninja Assassin, majority of the people are clueless of this rare disorder.
As a child I always have nasal mucus or phlegm. My folks thought it was a severe allergy and that I have asthma. Meds after meds, nothing helped me until the doctors told my parents to stop the meds and let the child outgrow her condition. But I never did. I have suffered brutal bullying because of it. I was so used to it I wasn't aware that my mucus just keeps on looking out of my nose. I was ashamed to blow my nose or cough out the phlegm because my peers will mind and look disgustingly at me, saying things like I have tuberculosis. I have to hold it in and endure my breathing trouble to save face. Basically I almost have no social life, my friends come and go in so little time. Maybe my social life was affected because I wasn't really confident of myself. All of my school life I was always suffering from fatigue and fevers. I got tested for tuberculosis for a few times in my life but the results always come out negative.
When I started work it is still the same, people won't understand. After quitting two jobs because of fatigue and fevers, I decided to go to the doctor again. Of course I have chronic sinusitis, because it's been going on for years. Why didn't I think of that? We endure pain and discomfort, we don't go to doctors. We are medically ignorant. The doctor does not advice sinus surgery because chances are high that it will come back. First I was prescribed the max dosage of Augmentin for about a month. Nothing's change a bit. Clarithromycin was my next med for a month too. Nothing. Out of curiosity, I started to search for situs inversus or dextrocardia, looking for signs that it has something to do with my sinusitis. I found out that some people who are borned with situs inversus has primary ciliary dyskinesia or Kartagener Syndrome.
I still wasn't sure, no lab tests are available here in the Philippines to prove I have it. I went to Dr. Ramon Lopa, an ENT specialist in Makati Medical Center, and without tests, he confirmed I have it. A lot of doctors here in the Philippines haven't met an individual with situs inversus, it's just another medical condition in a book to them. It is that rare. I guess the medical interns in PGH are lucky because they already met one, and that's me. They are amazed and even marvel about their find in me, when I have been suffering all my life because of it. How ironic. Once a school doctor is assessing me, and he has been searching for my heart beat for about 5 minutes, I totally forgot to tell him first, I've been oblivious about my condition for a few years. Dr. Lopa recommended surgery to enlarge the drainage of my sinuses, but because of financial reasons I backed out. To this day I am still enduring my condition and occasionally using a ketchup bottle with saline solution to irrigate my nose.
Suggested solution by PGH ENT specialist for nasal irrigation:
1 ketchup bottle of clean water
1/2 tsp of salt
1/2 tsp of baking soda
Mix salt and baking soda with the water.
I still don't know anyone here in the Philippines who has situs inversus totalis or dextrocardia. If not for fiction and movies like Ninja Assassin, majority of the people are clueless of this rare disorder.
6 comments:
hallo!im so happy to hear i am not alone.. i have Kartagener's syndrome too.. i was diagnosed last 1987 at the Philippine heart center for Asia..
what you have shared in your blog were not new to me.. i guess KS has a way of making us fill like an alien.. we may be rare, but not inferior.. i still believe that we are fearfully and wonderfully created by God..
how are you managing your KS? i hope there is another way we could communicate to each other.. living the challenges brought by ks is hard and the road ahead is not going to be easy.. i hope you are fighting and holding on..
anyways, i really would love to hear from you in a less public way..
@praise,
it's great to know someone who has one, someone who knows what it's really like. hope you'll get this message.
you can reach me at filipinobum@yahoo.com
thanks
Good day everyone! Count me in! 2002 when I was first diagnosed with situs inversus. God is amazing! Thinking about my condition, It could possibly be abnormal but praise God! I live a normal life just like any other. Though I easily get irritated with distinct odors, but I don't experience any nasal difficulties but I easily gets flu.
I wish to meet fellow SI/KS so we could exchange ideas and awareness. We could be a great blessing to others. See how God works through us?! Be blessed everyone!
i also have situs inversus.. but i haven't undergo other examination, only the chest xray. im currently experiencing colds, everyday.. i think i must see a doctor. :( thanks for the info.
hi, i am so glad to find ur article, I learned i was dextrocardia on 2002 and was confirmed situs inversus totalis two years ago. this past year, i've been suffering from chronic rhinitis and other complications. i was out at work most of the time so I decided to resign and get a rest for awhile. could it be KS? i went to see different doctors but they're all new to the condition and it did not help me much. do you know a doctor whom I can check with. thanks!
hi, i am so glad to find ur article, I learned i was dextrocardia on 2002 and was confirmed situs inversus totalis two years ago. this past year, i've been suffering from chronic rhinitis and other complications. i was out at work most of the time so I decided to resign and get a rest for awhile. could it be KS? i went to see different doctors but they're all new to the condition and it did not help me much. do you know a doctor whom I can check with. thanks!
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