26 years later and I can still call myself a survivor.

Personal stories of individuals and families affected by Kawasaki disease
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26 years later and I can still call myself a survivor.

Post by VroomVroom »

Hello. I'm completely new to this forum, obviously, but I felt I needed to share. Kawasaki disease and I will forever be inextricably linked, but I've never really told anyone the complete story. This is me doing something about that. I'd like to apologize in advance for the extreme length here, but hopefully at least one you will read it all. It has to be this long just to get it all in, I believe.

I'm 31 years old and was diagnosed with KD at 5 years old in the early spring of 1985 (I was a part of "The Denver Epidemic" that they like to talk about when the subject of carpet shampooing comes up). I don't have a whole lot of memories of that time, but I distinctly remember when I first felt sick. My family was visiting extended family in Denver, CO over the week of Easter some 5 hours away from our home in Grand Junction, CO, and my mother took me to 6 different pediatricians during that period who all misdiagnosed me as having strep. Finding no help from the doctors in Denver we drove back home and visited my regular pediatrician who took one look at me and told my parents that if they didn't get me on a last minute flight back to Denver and University Hospital that I might not make it through the night, because I had a very rare pediatric illness that at the time they were calling "Kawasaki Syndrome".

I got on the flight and could not stop itching, particularly in my genital area, and my mother was having difficulty getting me to sit still and not scratch in a crude way. I persisted, though, and eventually she relented and just let me go at it hoping it would at least grant me some comfort and figuring that it didn't really matter if anyone else on the plane was offended by the sight of a very sick little boy scratching his private area. Apparently I scratched quite enthusiastically and really got into it, something that my parents loved to embarrass me with by bringing it up around girls I introduced to them later in life :)

We had to apply to be accepted into University Hospital's program, because apparently they were working under a federal grant doing this special program focused on treating KD (I've heard that it was one of five such facilities in the US participating in this program, but please don't quote me on that, because I very well could be completely off there). I spent 6 days in that hospital where I was fed gamma globulin (I still have the IV scar on my left hand) and had fevers that spiked as high as 106.6. I was also one of the super lucky ones to develop life threatening cardiac complications, and the inflammation actually did cause my heart to briefly stop at one point.

Upon release from the hospital it was an extremely slow recovery. It's debatable and difficult to say how much KD has affected me ever since, but here are some of the issues that I have faced that I believe could be at least somewhat related:

* I was severely weak and sickly for the following 2 years after getting the disease. My doctors were stunned and dumbfounded at how slow my recovery was. I simply just could not shake the disease it seemed.

* The jaundice, chronic peeling and strawberry tongue stuck around for several more weeks after leaving the hospital, and during that time my parents gave me the nickname of their "little Chiquita banana" because of the color of my skin, something that stuck around for another couple of years as well.

* Puberty was a very slow and drawn out process that lasted much, much longer than it should have. I didn't really develop any sort of adult male upper body muscle until I was around 20, and I didn't finish on that front until I was about 27. I had chronic facial and back acne until I was about 22, despite neither of my siblings ever having difficulty with acne at all.

* I've suffered from "activity induced asthma" since at least 9 years old, and that combined with my mother's over-protectiveness RE: my frailty led to me never being able to play any competitive sports growing up and near failing grades in every gym class that I ever took. I was also as uncoordinated as anyone you are ever likely to meet, something that no one else in my family suffered from. Both of my parents were excellent athletes as children, my sister played basketball, and my brother had every capability of being an all star wide receiver had he pursued football instead of drama in high school.

* I was too weak and sick to start school on time, so my parents decided to hold me back a year from entering kindergarten to allow me extra time to heal. As a result I ended up graduating from high school 5 months before my 20th birthday despite never having to repeat a grade, something which led to me lying to even my best friends about my age all throughout my schooling just to feel a little more normal. Lying also had the added benefit of saving myself from a long and boring explanation of the whys and whats of Kawasaki disease, which is something that no one really wanted to hear in the first place.. Those explanations always, always ended with someone making a stupid motorcycle joke, but more on that in a little bit.

* Prior to KD I was quite a portly little kid, and my pediatrician had predicted that I would be 6'5 and 230lbs at full maturity. Instead I ended up 5'11 and not a penny over 180lbs at my absolute heaviest, and have never been able to gain weight beyond that point no matter what I've tried. Even the 180lb high water mark was only achievable as a result of weight gain from a medication I was taking at the time (lithium; my extra awesome health profile also includes a very sizable dose of bipolar I as well).

* Somewhere in there I developed a herniated testicle as well. That area is extremely sensitive to pain in most everyone, but ever since then I'm far more sensitive in that area than just about any other man on earth.

* Before I got sick I caught strep throat every single time my older sister caught it, which in our household was a twice a year occurrence. In the last 26 years since I have contracted strep a grand total of zero times, and my sister has had it many, many times. I have heard KD described as a strep retrovirus, so I've always been of the belief that as a result of the KD my body has built up a super strong immunity to strep. That said, every time I come down with a sore throat I get very worried, paranoid that the KD has come back to finish what it couldn't finish the first time.

* To this day I have an extremely weakened immune system. When others get sick and are down for a day, I'm down for 5. However, my mother ultimately did die as a result of complications from lupus, and the older I get the more I wonder if that might be the true culprit here. I do actually have some of the symptoms of lupus, such as Reynaud's disease.

* I still to this day peel often on my feet and fingers, and have a chronic foliculitis on both forearms and on my back that is completely resistant to antibiotics.

* I used to get regular yearly blood tests through my employer (I worked for several years as a formulator of industrial poisons so they tested us yearly just to make sure that exposure to the chemicals wasn't negatively affecting our health) and every year the blood tests would show the same spikes in the same areas that were indicative of non-Hodgkin's lymphoma, despite a complete lack of lymphoma.

* I had regular cardiac checkups until the age of 11, and have had a consistent arrhythmia since at least then.

* I've had numerous unusual and unexplainable cardiovascular incidents, the most recent of which resulted in an ER trip where I spontaneously and inexplicably lost blood flow to the lower half of my right leg for several hours. At each one of these visits to the ER I have been accused by the doctors of being a closet amphetamine or cocaine addict, despite a completely clean urine sample, all because they can't come up with a good reason why a seemingly otherwise healthy young white male that dresses like he's in a rock band would present so many oddball cardiovascular issues. Invariably when I explain that I did have Kawasaki disease as a child they drop the drug explanation and start treating me like a human being again.

* I have almost zero memories of the time that I spent in the hospital and the couple of weeks after it. Shaky memory in a five year old isn't unusual at all, but it seems a little suspect when I have near photographic memory of just about everything before and after coming down with KD. I don't know if this is as a result of brain damage from the high fevers or if it's more an issue of the brain blocking out a traumatic memory, but I'd be inclined to point the finger at the latter.

* On the lighter side of things, I've suffered through every lame and unfunny "VROOM VROOM" motorcycle joke you can think of (hence the username), simply because very few outside of the medical profession have ever even heard of the disease. Worse still, I've had idiots tell me that I am lying when I tell them the story, simply because "Kawasaki disease" sounds made up. My friend Scott made such comments when I told him my story, but a year later when he was studying to become an RN he took a pediatric illness course and was informed better. Apparently during the course of this class his professor asked the class if any of them had ever heard of the illness. Scott was the only one to raise his hand, and when he explained that one of his best friends had survived the illness the professor became elated and started begging him to try and talk me into coming down and speaking to the class about my experience. I declined the offer, since most of the nitty gritty of it is blocked out of my memory. Should those students be interested my case is all over the medical journals on KD of the time, and that's way more reliable than my shaky memories of violent puking, being poked with needles a million times a day, and the rubbery hospital pizza that I ate on my last day.

* On a pseudo-related topic, I also have absolutely no fear when it comes to needles now thanks to getting poked with them on a weekly basis for so long. I can't even understand why anyone else would be afraid of them at all, but that's such a common fear. I have a fairly rare blood type (AB+) so I donate blood on a regular basis, and getting poked is downright routine for me now. It's the very definition of a non-issue to me.

Anyhow, that's my story. That's the largest hunk of it, anyhow. If anyone has questions I will try my hardest to answer them. Reading over what I've written here I suppose it all reads very negative, but that's not entirely true. I'm convinced that KD gave me some pretty extreme hurdles all throughout my youth and that it still to some degree affects me today, but in all reality I really shouldn't have lived past the age of five. No one knows to what degree KD affects life expectancy, but as near as I can tell every day that I'm still breathing is a day that I was never owed in the first place. Should I drop of a heart attack tomorrow, I will die knowing that I lived far more of a full life than odds would have predicted, and because of that I am thankful of every extra day.

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Re: 26 years later and I can still call myself a survivor.

Post by juliagould »

Your story is really interesting to me. I was diagnosed at eight months old, so of course I can't remember anything, and my mom doesn't like talking about it much so I don't know a whole lot about the illness. I have been told that I had a heart attack at this time, so perhaps we had similar conditions. I've always had sensitive skin however it hasn't peeled. I'd like to know more about your lasting effects, if possible. What about headaches, joint pain, delays in childhood (you mentioned puberty), behavioral problems, etc? I've experienced most of these, especially since I was eight months old at diagnosis. I apparently had delays in speech, but once I started talking I knew a lot of the language. As if I kept it inside but continued to learn. Did you have any problems with development at five? I've always had bad joints, my legs got tested at four years old because I couldn't keep up with most people my age but turns out I just couldn't run fast. However, I had many problems growing and now suffer from a lot of hip and knee pain due to undergrown bones and tendons stretching.

I also love the "vroom vroom" reference. I remember about a year ago, my dad bought a new Kawasaki motorbike and my mom got so mad! I thought it was funny because I always wondered why it was called Kawasaki disease, and I've always incurred these jokes as well from classmates and friends, etc. It's always bugged me a bit but it is just something you have to let go. I'm just glad to find someone to relate! I come from a very small town (population of about 1000) so no one had really heard of it before.

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Re: 26 years later and I can still call myself a survivor.

Post by legacy37 »

Hi, I am 41 year old guy, reading your story sounds like I wrote it..... I had Kd when I was 15. This is my first time on any forum so I will put my story up at a later date, in short.... I was living in South Africa at the time and I was surely on deaths door and scared beyond belief as it took weeks before someone diagnosed me . I now have survived having mouth cancer, 3 years and going strong, living in England .

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Re: 26 years later and I can still call myself a survivor.

Post by jeremiah's_mom »

i have a 3yr old son who has been diagnosed at 2yrs old. he started showing syptoms at the age of 5 months. my husband is military and has recieved orders for italy and my question to you is will my child be able to travel and be over there lng term or are there any restrictions that you know about

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Re: 26 years later and I can still call myself a survivor.

Post by cmorey81 »

Wow it's amazing to read that people have gone through the same exact things I did! I was diagnosed right before I turned two, so I have very little recall of what actually happened. I know that I was the first diagnosed case in Southwest Michigan, and that they drove in bus loads of medical students to observe it. My mom told me I started with a rash and a fever and progressed to swelling in my hands and feet so severe that my skin cracked. I developed fluid around my heart, and my mom still tears up when she tells me that the doctor told her "If she makes it through the night she'll live."
Since then I was always the weak child growing up, I have experienced joint pain, activity induced asthma, eczema, and no matter how slow I start out or how hard I try I just can't be a runner. I end up in an asthma attack or feeling like my heart is going to beat out of my chest. I never really thought anything about any of these, I certianly didn't relate it to that long ago childhood disease, but after reading so many similar symptoms in others it has me wondering. Thank you for sharing your story!

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Re: 26 years later and I can still call myself a survivor.

Post by MomOf9yroldW/KD »

Very interesting! Thanks for sharing your story.

My son who is now 14 years old, had KD at age 10. He seemed to have small lingering effects from KD like you are discribing, but overall was a healthy kid. He did unfortunately get diagnosed with Non-Hodgkin's Disease (Stage 3 T-cell Lymphoblastic Lymphoma) on 3/9/2015.

KD seems to be linked to other diseases. Thanks again for your story.

Jana Jones

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Re: 26 years later and I can still call myself a survivor.

Post by kwathel »

I am also a "survivor" if you may call it that. I am now 26 years old. I do not remember much about kawasaki's but I do remmber being in the hospital. unfortunately I too have some effects from the diagnosis that just was found about 3 years ago. I am just now getting cardiac treatment and testing to acess the extent of the damage (jhad my first appointment yesterday) . So far I have a tricuspid regurgitation. I am scheduled for an angiogram next wekk to check my arteries. I lived my whole life normally with some discomfort and not knowing why

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Re: 26 years later and I can still call myself a survivor.

Post by missed diagnosis »

Very interesting article. I at one point in my younger life was missed diagnosed and never knew I had KD until i was 37 and had a my first of two heart attack while playing in a softball tournament I'm now 50. I work in the medical field and with a strong history of heart disease in my family on both sides always stayed in shape and keeped a very close eye on my Cholesterol which never got above 170. I am now on a daily regiment of cholesterol medications blood thinners aspirin you name it. My KD was picked up when they did my first of three angioplasty. I asked my mom several times before she passed if I ever got real sick when I was younger and she said only when you had strep throat several times when you were real young so I wonder if I had it and it was never picked up. I guess ill never know but what I do know is I was lucky to survive my heart attacks.

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Re: 26 years later and I can still call myself a survivor.

Post by Irma »

I am a mother of a 24 year old that was diagnosed at the age of 1. The pediatrician started us immediately on 8 hour of gamma globulin and a daily dose of aspirin followed up by echo cardiogram and EKG. Not much was known about this disease back in 1994 we were just lucky that this particular pediatrician had just seen a case earlier in the year. Now here we are 23 years later and my son found out he has heart disease, just had a stress test and pictures taken of his heart and he has aneurysm (valve) forgive me I'm still learning the proper terminology of his heart disease. He will undergo a angiogram Wednesday and he was given blood thinners and 4 other meds he must take. I wish that I was told back then that I should have him checked regularly by a cardiologist. It was bittersweet news for him because every doctor he would see would say it was because he was overweight or it was in his head and this was after multiple visit's to the ER with chest pain. For the first time the cardiologist told him the disease is a direct cause from the Kawasaki disease and it is urgent that they start treatment before he has a major heart attack. I will keep everyone updated. Thank you so much for allowing me to vent.

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Re: 26 years later and I can still call myself a survivor.

Post by joelinn »

I'm 31 years old and I was diagnosed with KD when I was 2. I had 4 leaky heart valves that closed on their own but I did get IVIG. I've never had much stamina for running but i've always been somewhat active. I just can't over do it or I get really tired and dizzy. I only have chest pains if I don't eat or drink enough water. I also have eczema and my lymph nodes in my neck, behind my jaw swell when my sinus are draining and I have a lot of pain there when my allergies are bad. My immune system is outstanding though. It's interesting to hear from other adults who had KD because my whole life people just laugh when I tell them I had this rare disease.

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Re: 26 years later and I can still call myself a survivor.

Post by janellechan »

I also had Kawasaki Disease! I was diagnosed at about a year old. I am now 14, turning 15 in about a month and still surviving.
Don't remember much of the experience though.
Does anyone know what diseases (or heart-related) that might affect me in a big way? Thanks

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Re: 26 years later and I can still call myself a survivor.

Post by Nancy »


at your age, you should still be seeing your pediatric cardiologist every few years


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