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Adult Complications

Posted: Tue May 15, 2018 9:10 pm
by Kawasakilady
Hi Every one!

I am so glad I have found this forum! I am a 24 year old female who was diagnosed with Kawasaki Disease when I was 4.
I had the typical symptoms, fevers, skin rashes, peeling, swollen lymph nodes etc, but living in a country/rural town, it went untreated for a week or so as the doctors where at a complete loss as to what I was suffering with.I was lucky enough to be clear from any heart disease.
I have lived a reasonably normal, healthy life other the insane, migraines, well until now. For the past 3 months, I have been suffering with shortness of breath, pains in the chest, extreme fatigue.I have seen a respiratory doctor recently (like I previously mentioned, I live in a rural town, so it is a long wait to see specialists) lungs have been cleared from any problems. I am now booked in to see a cardiologist, in the coming few days. The respiratory specialist, is the first person in a number of years I have come across, that has any background knowledge of our disease/syndrome.
He has told our family, that people can suffer a after affect in there later life, even if they were cleared of any previous heart problems.

I guess the purpose of reaching out on here, is to see if any one else has had the same problems, and suffered any "after affects" when being cleared as a child.
I hope that they will be no, nasty comments from this post, I am aware 3 months is a long time to be living with the symptoms, but it is incredibly hard to get into specialist. NOTE: I have regular contact/checkup with my doctors to monitor my symptoms.

Re: Adult Complications

Posted: Wed Nov 14, 2018 11:37 pm
by KDadult25
Hi there!

I am so glad to have stumbled across your post. I have been going through the same thing and I was diagnosed with KD as an infant and cleared when I was about 16 from a study at Yale New Haven Hospital. I am 25 and a reasonably healthy person, with no familial history of any serious illnesses but as of late I have been having a slew of unknown medical issues. I too suffer from migraines that have only gotten worse. Last year I was diagnosed with gout which is also an extremely uncommon diagnoses for a woman my age which then peeked the interest of a rheumatologist I work with. She had heard of my history of KD and new how abnormal it was for me to actually have gout and started to dive deeper because I was almost a challenge to her. After explaining all of my history, symptoms of swelling, extreme fatigue, joint pain and headaches she started to send me for lab work to rule out typical Rheumatological diseases. After having endless amounts of lab work done, besides a slightly elevated ESR everything was normal on any immune diseases and the only conclusion she could come to was fibromyalgia and suggested I follow up with a cardiologist to have everything with my heart checked out once again due to the KD.

After undergoing more lab work, Stress test, EKGs and echos everything still apparently came back normal. The only thing my cardiologist was able to really see was that at the age of 25 I have borderline high blood pressure and an irregular heart beat. He wanted to send me for a CTA to get a better understanding to see if there were any CA however, insurance denied the request. He put me on a course of high dose asprin which did help eliminate the severe constant chest pain I was experiencing and I am to just follow up every couple of months. Meanwhile I still have high BP, experience episodes of shortness of breath, my hands and feet swell up constantly, I experience this weird vascular dilation rash type thing on my hands feet and legs and have even had episodes where I almost pass out. None of my doctors can pin point what is going on and its extremely frustrating, I have even been to the emergency room a few times because my chest pains have been so painful that I honestly believed I was having a heart attack; and the only thing I can ever fall back to is that potentially it is later effects from the KD and I am just curious to see what other individuals our age are experiencing because I sometimes feel like I am stuck in a 90 year olds body!