46 year old survivor

Personal stories of individuals and families affected by Kawasaki disease
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Re: 46 year old survivor

Post by DAND1957 »

I am 59 years old. Diagnosed only 15 years ago after a heart attack. Apparently had KD as a child. Mother and father had no memory of the symptoms nor do I . Have three stents. Last one about 4 years ago. See cardiologist regularly. I have bouts with skin issues and joint pain but still do yard work and activities. I am slowing down some (59 will do that).
I would like to know statistics on age of people with KD.

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Re: 46 year old survivor

Post by Teng »

Hi, Sir
I just registered this forum and read your story. I am so sorry to hear your coronary problems. I came to the forum because of my daughter who was diagnosed as Kawasaki disease two more months ago. She was wrongly treated in the hospital as other diseases and caused two aneurysms and also dilation on her coronary arteries. The largest aneurysm reached 7.4mm. After two month treatment, we had CAT test for her last week. The CT results turned out to be normal, showing no aneurysm and dilation anymore. In these two months, I read a lot of articles related to heart disease and looked into different treatment solutions. I would like to share our treatment and hopefully it would be inspiring and helpful for you.

After doing a lot of study, I found that modern medicine has no special treatment to heart disease. doctors usually ask the patients to eat those synthesized medicine like aspirin and do surgeries if their situation got worse. These treatment would be helpful in short term (by the way, actually these synthesized medicines have a lot of side effects, like aspirin, my daughter got bloody nose that could not be stopped). But it does not solve the fundamental problem as what causes the heart disease. As for kids who got aneurysms and dilation due to Kawasaki disease, there is only 50% chance to get full recovery of the aneurysms. Many kids would have the aneurysms with them in their lifelong time or have some blood vessel wall abnormality after the aneurysms disappear finally. For my daughter, in addition to taking aspirin, we also went to see an Asian doctor who prescribed some herbs that are good to her overall recovery. Those herbs have the functions of helping her appetite, blood re-generation and circulation, and recovery of her heart and coronary arteries (the most important part). I saw my daughter got better and better every day. When her doctor called us about her CT results, we were sure that things are going into the right direction but we never expected that good result happened so fast.

In addition to the herbs, we have a close watch on my daughter’s diet, asking her to eat all kinds of vegetables, fruits, and whole wheat stuff and keep away fatty food.

I have no intention to promote Asian herbs or oriental medicine system. I benefited it from it and just want to let you and people in this forum know another option to treat heart problem. There are quite some herbs which are good for heart and blood (one good herb is American Ginseng, which is very good for heart. But it has that cold trait and is often taken by combing other herbs.) . For the oriental medicine system, the difficult problem is to find a reliable doctor. Usually the doctor also needs to check the patient regularly (like my daughter visits that doctor every week to slightly adjust her herb prescription based on her progress). In California and New York, there are some oriental medicine clinics, some of them are good based on patient feedback. You may do some investigation to find a good one. I am in middle area of US, my area happened to have an oriental herb store where there is a Chinese doctor there. We tried and it worked for my daughter's illness.

Just share my daughter's story here. I have a long message here. Hope it helps. Best of luck!

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Re: 46 year old survivor

Post by domqueen »

Pretty amazing, I'm new to this forum. My daughter had ivig about 5 days ago, and five days into her fevers. Funny looking back on all the crazy symptoms and praying for some answer and getting one so fast. I thank God for that and the care we got. Now I just have to find some way to live with the worry over my daughter but thank you for sharing your story. You have been through a lot. God bless you.

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Re: 46 year old survivor

Post by ErinD »

I’m not sure if you’re still looking for an answer to this. I can’t say for certain that he is the oldest, but my father will be turning 70 years old in 2 weeks! He did not realize he had Kawasaki disease as a child and was diagnosed in adulthood (about 14 years ago) following abnormal heart tests and then they spotted twisted arteries in his heart. He has a very large aneurysm (8.2) and 2 fully blocked arteries in his heart (which have thankfully developed collateral arteries). Recently the aneurysm has grown quite significantly and a test has shown that he’s had a mild heart attack (he was otherwise not aware). Either way thought I’d share. Best of luck to you all 💕

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