33 years after KD, My Husband's Story

Personal stories of individuals and families affected by Kawasaki disease
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kdwife
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33 years after KD, My Husband's Story

Post by kdwife »

Let me start with a little history: My husband was diagnosed with Kawasaki Disease when he was 9 months old. This was in 1978 and at that time they knew very little about the disease. I don’t remember at exactly what point in our relationship he told me he went through KD, it might have been when we were discussing having a baby. It might have come up when we were discussing his family and medical history. I did not really know what KD was, but his mother told me it was the worst thing she had ever been through with him. She still cries when she talks about it. She told me about having him in the hospital and that the doctors could not do anything for him except keep taking samples from his body. They ended up taking him home and I guess it ran its course. I decided to do some research on it and I am very glad I did.

About 3 months ago my husband started complaining about some tightness in his chest that radiated out and that he could feel it in his jaw. We discussed going to the doctor and he finally did. He had a bad cold about the same time he started experiencing the chest pain, so we both kind of assumed it was a respiratory problem or some sort of infection. Evidently the doctor thought the same thing because he gave him a heavy antibiotic and an inhaler incase it was asthma related. He started on the antibiotic right away (it was a 5 day Z pak) and used the inhaler as soon as he had the chest pain. The inhaler did absolutely nothing so he did not continue to take it any longer. We waited for the antibiotic to kick in and it did not seem to do anything. He would have these pains doing the slightest physical activity: playing with our two kids, climbing 1 set of stairs, walking quickly through a parking lot, etc. He had done some research on his pain and his symptoms, and it appeared to be a classic case of angina. We became more concerned about it so he went back to the doctor about 3 weeks later. This was a different doctor and my husband had an incredibly frustrating experience. She basically shrugged her shoulders and said she thought it might be respiratory. She ordered a chest x-ray (which came back normal). He grilled her on the possibility of it being angina and she ordered an EKG and told him she would refer him to a cardiologist to check him out since the pain was in his chest.

At this point, we were grasping for straws for someone to take his pain seriously so I asked him to be sure to notify the doctors that he had KD when he was a baby. I had vaguely remembered reading something about acquired heart disease and KD when I was doing my research on it.

Well she did not place the referral correctly and his doctor (who was on vacation previously) called him about a week later and asked him about the referral. His doctor placed the referral and they were able to schedule an appointment for the next week for a treadmill stress test. He is only 33 years old, very healthy (other than the chest pain) and actually had a stress test 2 years before that seemed to come out OK so no one really took it very seriously.

We went in for the stress test on a Tuesday. I am a teacher and was out of school for the summer so the kids and I went with him since he was really not feeling well. After the stress test the technician came in and told me that the cardiologist ordered some more tests. The cardiologist called me in and told us that his stress test was slightly abnormal. He said that he would have written it off as a fluke based on the fact that he is so young, that he has had clean EKGs, his blood work was fine, that he was basically really healthy otherwise; however when my husband told him he had KD as a baby the cardiologist quickly changed hi s mind. He called a pediatric cardiologist who was familiar with KD and immediately decided to give my husband an angiogram, which was scheduled for 2 days later on Thursday. He said that there was a possibility that he would have to have an angioplasty if they found any blockages during the angiogram. I mentioned that my husband had done some research about the long-term effects of KD and that several people had to have bypass surgeries in their early 30s. The cardiologist assured us that they do angioplasty instead of bypass as it is less invasive and the preferred method of dealing with blockages. Since his stress test was only slightly abnormal (but he was having chest pain), we assumed that this was probably going to be course of action.

Thursday came and my husband went in for the angiogram. The nurse told me it would take about an hour unless they had to do the angioplasty and then it would be longer. I waited for an hour and twenty minutes and finally the cardiologist came and got me. I assumed that he was OK since it did not seem to be long enough to do the angioplasty.

The cardiologist took me into a consultation room and informed me that my husband would have to have bypass surgery. I was shocked. He said that one of his arteries is 100% blocked and that he has 1 artery that was 90% blocked, and one artery that was at least 70-80% blocked. He would need triple bypass surgery. The cardiologist informed me that his arteries were completely clean and healthy above and below the blockages, and that the blockages were completely due to the KD he had as a baby. He explained that if left untreated KD attacks the blood vessels and the arteries and that it caused swelling, possible aneurysms, possible blood clots, and scarring in these arteries that led to the blockages. They scheduled his surgery for Wednesday of the next week. He explained that if his artery that was 100% blocked had happened suddenly, then he would have had a heart attack, but since it was gradual, his body had time to try and reroute the blood around the other side of the heart, so basically his body had been dealing with this for some time.

Although the surgery is really intimidating and that was not the news we wanted to hear, we were so grateful that someone took us seriously when we mentioned KD and that they did not just send him home after the stress test to have a heart attack or heart failure. We have learned how important it is to not only listen to your body, but to be an advocate for yourself. The cardiologist mentioned at the time that if he had been a woman the same age, with a stress test result that my husband had, they would have sent her home because it would have been even less alarming for them to see the same abnormality in a female stress test. I understand that the treatment of new cases of KD is much more rigorous and that the medication helps prevent cardiac problems, but for all those who went through this in the 1970s or before the disease was fully understood, please listen to your body and get yourself checked if you need to—and keep mentioning that you had KD until someone takes you seriously.

liquidambar
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Re: 33 years after KD, My Husband's Story

Post by liquidambar »

Thanks for telling us your story.
It is a shame that you and your husband had this much trouble.

My husband has had three of these angiograms, because of his mitochondria cyopathy. His heart seems fine, but we worry about the miss firing of electrical impulses. He has what we hope are panic attacks, but really his heart starts beating really fast when we added Insitotol - One of the vitamin Bs that is used at the end of the energy cycle to break up remaining carbohydrates. That does not sound like it is in the brain to me - more like - in the capillaries. We can get no satisfaction either.

So much it seems that can go wrong with the heart, as well as the brain.

No doctor has yet to take my childrens Kawasaki's serious, not ever except when they had the initial Kawasaki's and inflamed heart valve (mummur) That was when they were six months old and two years old.

No doctor since has done more than give a slight nod and a glance.

My children are now 29 and 24.

But we are having more problems with the brain than the heart. Heart has been ignored.

You had so much trouble finding it and he was actually having chest pains. So, while his heart was slowly being blocked and growing and re routing veins around it - no one cared he had Kawasaki's and had any kind of concern? That is right isn't it.

That is about how it is.

kdwife
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Re: 33 years after KD, My Husband's Story

Post by kdwife »

Thank you for your reply. When my husband was having the chest pain we did not tell the first few doctors that he had KD as that was not really on our mind either. His KD happened so long ago, and we really did not know that much about it. It was just a fluke that I remembered when I did.

Our main problem was that the doctors were all very confused about his chest pain because he is so young. They kept saying that he was too young to have heart disease and tried to write it off as something else. We were frustrated that no one would take his chest pain seriously. My husband mentioned his past KD for the first time to the cardiologist after the treadmill test and the cardiologist took it very serious. He did have to call a pediatric cardiologist to find out what his risk factors might be, and then he went straight to scheduling the angiogram. We were very lucky to find such a good cardiologist.

From my research it seems that Kawasaki Disease is such a rare condition, I really feel for you having to go through it with both of your children. Did they get it at the same time? If they have chest pain, I hope they are able to find a good cardiologist. It seems like KD is becoming more widely recognized in certain circles, but again it so rare that doctors don't usually jump to the connection without the patient being an advocate for himself.

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MikesMom
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Re: 33 years after KD, My Husband's Story

Post by MikesMom »

thanks for sharing and keep us posted after his surgery. we will be thinking of you both. my son now 15yrs was dx with KD at 18 months in 1996 and required by-pass surgery just after his 13th birthday. they by-passed one 100% blockage and are watching a 50% blockage found at the same time, which they decided not to by-pass at that time because 50% open and it would have competed with a by-pass so they are basically waiting until it closes off more before by-passing it. he too had new caprillary (sp) arteries grow which helped compensate the heart to get enough blood and his stress test only showed a slight abnormality so the cath was very shocking when they fond the two blockages. he unlike your husband has been followed by a cardiologist every six months since 1996, but had not had a cath done in 6 yrs when they found the blockages, he was having stress tests once a year and then the one 3 yrs ago showed the slight change which at first they said only slight change they will do a cath just to ensure but then they found the mess which we were not expecting, he had not complained of any chest pains leading up to the discovery.

did they say whether or not he had undetected anseursyms??
Keep us posted.
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

trevsmom
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Re: 33 years after KD, My Husband's Story

Post by trevsmom »

This is what I worry about happening to Trevor over time.

He had KD last November (age 6) and despite being treated (twice since he didn't respond to the first IVIG) within the 10 day window, he has developed giant aneurysms. He takes Coumadin and aspirin and he is being followed closely by his pediatric cardiologist. He has had numerous echos, ekg's and a cardiac catheterization and will have a stress test in the near future.

I will keep your husband in my thoughts and prayers. Please let us know how he is doing after the surgery. Good for you guys for being proactive in your research and for mentioning it to the doctor when you did.

liquidambar
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Re: 33 years after KD, My Husband's Story

Post by liquidambar »

You saved your husband's life by mentioning Kawasaki's at the right time to the right doctor.

Did my children have it at the same time. No.
It is an autoimmune disease.
If followed after each of their DPT shots.
My daughter had typical Kawasaki's and then had an atypical case of it at five.

My son had atypical case of it with heart murmurs, high prolonged fever peeling. He would get better with it long enough to get another DPT shot. By his third one he had a stroke immediately after.

My daughter had three Hep Bs two and half years now and became stiff again, developed high SED rates, and High reactive protein.

She had a flu shot (work bullied her into it) last fall.

We are now having all sorts of problems. I thought she was lined out okay and had returned to work. Yesterday, they called from work and told us she had a seizure and they had transferred her to ER of another close hospital.

Jillis Folks
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Re: 33 years after KD, My Husband's Story

Post by Jillis Folks »

Thank you everyone for posting your stories here. So sorry for the difficulties you are facing, but so appreciate you sharing your experiences, so we all can learn.

We are only one week post IVIG, and will have her follow-up echo in a couple of weeks. Keep us posted.

Allison

kdwife
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Re: 33 years after KD, My Husband's Story

Post by kdwife »

I just wanted to post an update. My husband is now 2 months post surgery (triple bypass). The surgeon spoke to me after the bypass and said that the damage was caused by Kawasaki Disease and that he probably had less than a year left before his other two arteries closed up and would have likely had a fatal heart attack. They had a hard time trying to lower his heart rate after the surgery, while he was at the hospital, but that was most likely because he was so young and his heart was not used to working with so much blood due to the long term blockages. About 3 weeks after he came home he passed out (most likely due to his blood pressure dropping so low). I thought he was having a heart attack and called 911. He was conscious when the paramedics got here and he was stable by the time he got to the ER, but his blood pressure was only 59/25--and stayed that way for about 2 hours. He returned to normal by the time they had to transfer hospitals and he has been fine since. We now keep a blood pressure cuff at home so we can check him at least once a day. He is doing well now. They used an artery from his chest, one from his left arm (and incision from his wrist to his elbow on the inside of his arm) and a vein from his leg. He can use his left hand but still has a hard time and will need physical therapy to try and gain strength and flexibility back. We are so lucky that we found a cardiologist that took us seriously when we mentioned Kawasaki Disease. This is why it is so important now for parents to get a proper diagnoses when then children start having symptoms of KD and why the treatments they do today to help prevent these heart problems can be life savers.

Momcat
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Re: 33 years after KD, My Husband's Story

Post by Momcat »

Thank you so much for posting this. Sometimes people just check in every once in a while here at the forum and find that their doctors told them they would be fine for life if there were no aneurysms or dilations. We are learning this is not true, that the coronary arteries are scarred after KD. We've read reports of people having sudden cardio events post KD and they had nothing showing on echoes or EKGs.
It's interesting to learn about the low blood pressure after the bypasses. I wonder how common that is? I've also never heard of the surgeons using an artery out of an arm before.
Thanks again for the information and reminder to all regarding long term heart checks post - KD.
Sandy

kdwife
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Re: 33 years after KD, My Husband's Story

Post by kdwife »

I know my husband is one of the few older survivors (he is now 36), so we feel like pioneers at times dealing with some of the long term affects of untreated KD. Just curious if anyone who had bypass had unexpected heart related complications within the 3-5 year range after the bypass? Thank you in advance for any information.

kawasakiVictim
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Re: 33 years after KD, My Husband's Story

Post by kawasakiVictim »

Hi,
I'm 37 and I survived a heart attack few months back, only then realized i'm a KD patient as well. So interested to know about the cases as well as the treatment. Right now its only multiple blood thinners

Mag
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Re: 33 years after KD, My Husband's Story

Post by Mag »

I guess no one took my son's KD seriously. He's now in heaven.

lashikani
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Re: 33 years after KD, My Husband's Story

Post by lashikani »

kdwife wrote:I know my husband is one of the few older survivors (he is now 36), so we feel like pioneers at times dealing with some of the long term affects of untreated KD. Just curious if anyone who had bypass had unexpected heart related complications within the 3-5 year range after the bypass? Thank you in advance for any information.
kdwife, my husband has such a similar story with having such a hard time figuring out what was going on since the usual tests were coming up negative and he was/is so young. I posted his story here: viewtopic.php?f=2&t=3435. He had a CABG at 36 and is now 40 and they had to stint blockages that were recently found. The strange thing is that they weren't there when he had the bypass and they were the arteries going to his stomach. We certainly feel like pioneers! But, it's hard to believe that no one else has gone through this before. How is your husband doing today?

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