I had KD 30 years ago

Personal stories of individuals and families affected by Kawasaki disease
Post Reply
Tiger girl
New Member
Posts: 2
Joined: Thu Mar 28, 2013 9:43 pm

I had KD 30 years ago

Post by Tiger girl » Thu Mar 28, 2013 9:48 pm

I had KD 30 years ago, I spent four weeks in a hospital confined to my room. I have had no symptoms since. I was wondering if anyone else had any information on if they had problems as they matured? Should I be looking out for anything?

keeblerelf
New Member
Posts: 3
Joined: Wed Apr 03, 2013 9:33 am

Re: I had KD 30 years ago

Post by keeblerelf » Wed Apr 03, 2013 9:40 am

From everything that I know (which admitedly isn't much) it might be prudent just to get in touch with a cardiologist. A big problem us KD survivors have is when we have a heart attack, it isn't from being big, cholesterol, or high blood pressure. So I've read several posts with doctors not knowing what to look for or telling some one they are fine when they are not. Get a referal from a general doc, visit a cardiologist. And just let them know you are trying to be proactive and you want to be certain you have no anuirisims (probably misspelled).

kdwife
10+ Posts
Posts: 12
Joined: Sun Jun 27, 2010 10:51 am

Re: I had KD 30 years ago

Post by kdwife » Wed Apr 03, 2013 12:48 pm

My husband who is now 35 had to have triple bypass open heart surgery in 2010 (he was 33) due to damage done from KD. He was one of the first cases in the nation and they did not know how to treat it then. I am linking the story I posted here:
viewtopic.php?f=2&t=2162&hilit=husband
Please get checked out. He started having angina and no one would listen. It took a lot of persistence to get someone to pay attention, but it was worth it. The surgeon told me that he would have had a fatal heart attack within the year had we not caught it in time.

rainwalks
New Member
Posts: 1
Joined: Sun Apr 28, 2013 9:42 pm

Re: I had KD 30 years ago

Post by rainwalks » Sun Apr 28, 2013 10:06 pm

I am 41 years old and had KD and survived (obviously). I am always self conscious of chest pain but not paranoid. If I do feel pain that is either extreme or goes on for extended period of time I do seek medical attention/advice. The first thing I mention when I have a new doctor or when I see someone for pain, is my KD. They usually are impressed to "meet me" lol and also to know that it's in my history so they can test accordingly. It's always important to give all the information when you have pain and to advocate for yourself. You know you and they can only go off of what you say.

savannahp
New Member
Posts: 1
Joined: Tue Apr 30, 2013 8:47 pm

Re: I had KD 30 years ago

Post by savannahp » Tue Apr 30, 2013 8:50 pm

Hi,

I was wondering if any of you guys know if joint pain can be a reoccurring symptom of KD. I had it when I was very young, and now I am 22. I sporadically get extreme joint pains that I have gotten for as long as I can remember. I know it's a symptom of a later phase when being diagnosed, but I am just wondering if there is a possible link.


Thank you so much.

rvc12533
New Member
Posts: 1
Joined: Mon Oct 28, 2013 11:39 am

Re: I had KD 30 years ago

Post by rvc12533 » Mon Oct 28, 2013 12:31 pm

hello , im 30 and had kd when i was two ,,, i im one of the 35% of ppl that have bad problems from it ,,,spina bifida dew to tail; bone grew out n causes nerve damage , scoliosis spine twisted n curved ...grew extra rib... left side of ribs grew caved in deformed.joint pain in my knees and hands ...arthritis....back pain ,,,my mother took me to childrens hosbital for only two years after kd ,,,i had a heart aneurysm, she never took me after thatn and i guess was sposed to every 6month at least .... i knew i had kd but never knew it caused my pain issues untell reading outher stories ,,,,ive been to many doctors ,like with group health ect. ect ,growing up the doctors put me on pain meds since i was 17 ive three pain contracts saying i get pain meds for rest of my life ,,,, they also told me i had ""SPORTS ASMA "" since i was 13 beacuse i couldnt play sports or do anything like run half a blook with out chest pains and running out of breath , NOT TRUE! i learned now!! MD's have a licnsce to pratice medicine so they just guessed ,,ive always told them i had kd it showes in my med records .....ive only worked as a manger all my life due to not being able to do anything labor ....in the last year ive been reading about kd and now knoe somthing ive very wrong with my heart ....sharp pains and now i cant even walk up a flight of stairs/ or give my girl a back rub without my heart hurting and panting for 15 min ....im in tx and saw a doctor about my heart ...they did a xray , ultrasound n stress test """btw i couldnt finish cuz i only could run for 4 min not 15''they said my heart was fine ,,,and the doctor refured me to rheumatolgy speacilist ,,,i got denied beacuse,, GET THIS, i came up nagitive for kd .so he couldnt help me ..lol of corse i came up nagitive i had it when i was two years old and only kids get it around two !!. they said the doctor gave wrong refurel ...every doctor ive been to doesnt knoe shit about kd!! or doesnt want to do the research... i knoe my heart it bad n they just look at me like im carzy ,,,my heart getting very worse ,,I KNOW IT...im tired of these smart MD's telling me my heart if fine ,,,,ive read ppl die from this and they dont take the time to do the correct test beacuse it cost money and needs to go thru outher test to get approved ! but the ppl that did the ultra sound, exray,and stress test "" said that aneurysm dont go away ,,,if all three test came up normal ,,except for very low hypokalemia and high bp,,,what test do i need ??? maby a MRI? i have two kids and im scared im going to die from heart atack ,,im not scared of dieing, but leaveing them with nothing ... im trying to get on SSDI not ssi ,,,i have made enof work credits and if i die it will take care of them ! ,but i need to have them find out whats wrong with my heart to get approved faster stateing that ppl with post kd have shorter life spand that what my lawyer said and i can get appoved in 3-6 months due to my cond. ,,,,so please if anyone knows what test i need done for my heart please let me knoe ,,,,beascue the dam doctors dont !

sry for the miss spelling ive been on pain meds since 17 and have been off cold turkey for 2 1/2 month so i can tell the doctors what hurts and where ....

lost 35 lbs and am in alot of pain ..

cmorey81
10+ Posts
Posts: 11
Joined: Mon May 06, 2013 6:51 pm

Re: I had KD 30 years ago

Post by cmorey81 » Wed Oct 30, 2013 4:49 am

Rvc12553 have you ever had an angiogram? From what I understand that is the one test that is sure to show if there is a problem. Other people say that they passed all the other tests with flying colors but an agiogram showed major blockages in their coronary arteries leading to bypass surgery. So listen to your body not the doctors. I understand your frustration though because I'm going through the same thing. I just finally got a referral to a cardiologist after fighting with general practice doctors for over 6 months. Good luck!

aubreys kd mom
New Member
Posts: 2
Joined: Tue Mar 18, 2014 9:26 pm

Re: I had KD 30 years ago

Post by aubreys kd mom » Thu Mar 20, 2014 10:21 pm

I was curious if you all that had it 20- 30 yrs ago did you all get treatment within 10 days?

mmoore17
New Member
Posts: 1
Joined: Fri Jul 25, 2014 1:57 pm

Re: I had KD 30 years ago

Post by mmoore17 » Fri Jul 25, 2014 2:02 pm

I am also curious to know about if those who had it long ago were treated, because my daughter apparently had it back in 2006, when she was just over a year old. She is now 9, and we are finding out that she has aneurysms on her coronary artery caused from having KD and it going undiagnosed and untreated. I am scared to death that she will have major problems from it, even though she has been absolutely fine, and very active up until now. We are at a complete standstill at the moment, her doctors do not want her to do pretty much anything at all while we are awaiting more tests. Very frustrating for an active 9 year old! And worrisome for her parents. Just glad we caught the aneurysms before something tragic happened.

Nancy
KD Forum Leader
Posts: 670
Joined: Mon Apr 25, 2005 6:49 am

Re: I had KD 30 years ago

Post by Nancy » Fri Jul 25, 2014 2:56 pm

hi

How scary for you and your daughter :(

About 25% of children who did not receive IVIG may develop coronary artery complications, such as aneurysms

Is she being followed now by a pediatric cardiologist ?? Important to learn if she will need long-term medication or have any activity restrictions and this is basically over a pediatrician's head !

best
nancy

firemedicsapp
New Member
Posts: 2
Joined: Sat Sep 06, 2014 5:56 pm

Re: I had KD 30 years ago

Post by firemedicsapp » Sat Sep 06, 2014 6:03 pm

My husband has Kawaski's Disease and is 45 this year (2014). He has survived cardiac arrest and was not treated as a child. He recently had another heart attack and they do not know what the cause is for either heart attack. We do know that his RCA is completely collapsed and are headed to Emory University again on Monday 09082014 to attempt to find out if. anything can be done to correct the damage caused by the Kawaski's. He is currently on three blood thinners, they think thismay help in the prevention of any more heart attacks but they tell u that they have no one to compare him to.

Post Reply