30 years later....

Personal stories of individuals and families affected by Kawasaki disease
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cmorey81
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30 years later....

Post by cmorey81 » Mon May 06, 2013 7:42 pm

I was diagnosed with KD 30 years ago, the first case in southwest MI. I was just curious as to what long term side-effects people have experienced? I guess I always looked at it as something I lived through and it was done and over, never really thought it might still have an effect on me.

Pamela512
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Re: 30 years later....

Post by Pamela512 » Wed May 22, 2013 12:52 pm

I was wondering the same thing about long term side effects. My daughter who is now 13 had KD when she was 20 months old. I have noticed she has serve seperation anxity and she has so many seasonal allergies. Have you experience any of these systoms as well? Would be very interseted in knowing.

cmorey81
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Re: 30 years later....

Post by cmorey81 » Mon May 27, 2013 2:43 am

I had separation anxiety after having KD from what my mom said, probably because of the hospital stay. I didn't have seasonal allergies though. I was weaker than my peers, and I got Charlie horses in my legs a lot. I was also diagnosed with runner's asthma in eighth grade. I don't remember anything else though.

kdwife
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Re: 30 years later....

Post by kdwife » Thu Jul 18, 2013 8:13 pm

I am not sure if you were treated for KD or just diagnosed. If you were not treated or monitored by a cardiologist, I HIGHLY recommend making an appointment with a cardiologist. My husband had KD at 9 months old in 1978 and was never treated or monitored (just diagnosed). They didn't know what to do to treat it at that time and had thought it just ran it's course. He had triple bypass in 2010 at the age of 33 due to the aneurysms he had in his heart in 1978 that no one knew about. The sites built up scar tissue over the years and completely blocked his arteries. I don't want to scare you, but if you start having chest pain (angina), I would push your doctors to listen to you and make sure they know you had KD. He was a rare case. Not all KD patients develop heart issues, but it is something to be aware of in case you start having any issues. It is hard to get doctors to listen to a healthy looking 30 something male--especially if the normal tests show no issues. Listen to your body. I hope you are doing well and don't ever have to worry!

cmorey81
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Re: 30 years later....

Post by cmorey81 » Mon Aug 12, 2013 8:11 pm

kdwife,

I was diagnosed, I spent about a week in the hospital. As far as follow up, I don't remember any. I've recently started having pretty bad chest pains after I exercise, even after the ache goes away I'm left with a feeling of pressure on my chest which makes it feel hard to breathe. Normally I workout in the mornings and I end up spending the rest of the day worn out and feeling horrible. I've had blood work done, EKG's, chest xrays, and I had a treadmill stress test a couple days ago. ALL of these tests are crystal clear and normal...other than I had a hard time getting my heart rate to come back down after the stress test. It's frustrating because I feel awful, like something is seriously wrong, but nothing is showing up on the tests and I'm having a hard time convincing my doctor to refer me for more invasive testing. I'm nothing short of printing out some stories to show him that other people's tests came back fine when they weren't!

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