46 year old survivor

Personal stories of individuals and families affected by Kawasaki disease
rascotttx
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46 year old survivor

Post by rascotttx » Sun Jan 18, 2009 3:43 pm

Hello.
I am a 46 year old man that survived...
In the spring of 2007 I began having chest pains. I went to the Doctors office and they of course set me up to have a stress test.
The test results were "normal," even though I was feeling terrible.
I was finally able to convince the cardiologists nurse practioner that something was wrong since I felt so bad.
She set me up to have a heart cath done.
The cardiolgist of course was expecting to find either nothing or maybe a single blockage, as I do have high cholesterol.
Well that is not what happend! Boy, it is not fun to surprise a cardiologist during a cath.
I had three aneurisms in my left coronaries, and a 5 (yes FIVE) inch long section in my RCA that had the "string of pearls" type of damage.
He asked if I had had any really bad viral diseases as child. The only STRANGE thing, is that I had supposedly had scarlet fever TWICE! (Not supposed to happen...)
He also asked me if I had any family with me that day. When Itold him my wife was in the waiting room, he actually went OUT and GOT her to show her the images as the cath was being done! OF course, that was EXTREMELY stressful to us! He then called in other cardiologists and a surgeon to figure out what to do.
I wound up having a quadruple bypass to fix everything 2 days later. He actually wanted to do it immediatlely, but the surgeon wanted to wanted to wait since I previously been taking aspirin for the chest pains. It then gets WORSE! After feeling great for about two months, the pains came back. Since that time I have had several more caths, and have a total of 16 (yes, really, SIXTEEN) stents throughout my coronary arteries, and even have stents within stents within stents, in the RCA! All this apparently due to scar tissue formation. Anyone who wants to can get in touch here to discuss this. It has been a rather harrowing couple of years for us and our two kids.

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Re: 46 year old survivor

Post by Momcat » Sun Jan 18, 2009 10:24 pm

WOW!!!!!!!
I am so glad you posted, please stay in touch here at the forum. Stents in stents?? I didn't even know they could do that-- I know our daughter will probably need some surgery someday as she has two giant aneurysms and one is 4 cm long and the other is 5 cm long.......WOW again!! SIXTEEN stents?? You are the bionic man! It sounds like you have had several surgeries. What did you feel like when you knew something was wrong with your heart? It is a miracle you made it and have survived. What arteries did they use for grafting?
So, how old were you when you got sick?.......I wonder if you had KD twice. What is your ancestory.....Asian by chance?
I could keep asking questions, but this is enough for now.
WOW!!!!!!

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Mon Jan 19, 2009 2:12 pm

Hello.
Wow indeed! When I had my CABG they actually used the standard SVG from the leg. NO arteries! From some things I have since read, I wish they had used arteries. That MAY have prevented many of my later complications. To answer your question about what I felt like... I was actually walking down a hallway at work when I felt like someone hit me in the chest with a hammer. It was very sudden and sharp, and my me feel exhausted almost immediately. At first I thought it was something else. When I did not start feeling better quickly, I called the doctor. When I went in, they of course did an EKG and took blood, etc. EVERYTHING was normal. No cardiac enzyme problems, not EKG abnormalities, NOTHING. I was scheduled for a stress test a couple of days later. The stress test again, showed NOTHING. My GP of course sent me to the cardiologist. I had a holter monitor done, and it did not show anything. A couple of years earlier I had gone to the GP for something else, and my heart rate was way UP. (130 resting) He sent me to the cardiologist then as well. The testing then showed I was having preventricular contractions. He put me on Toprol, and that solved that problem. ( I now wonder if that was just the first symptom of all of my other problems...) I have copies of my childhood medical records, so I know exactly when I was sick. Unfortunately, back then the notes etc. were not very good. The first time that I had "scarlet fever" was in 1968, when I was six! To early for KD to have even really been know about in central Indiana where I grew up! The second time was in 1971. I guess I could have had KD twice. Had not actually thought of that... I do remember BOTH times that I felt terrible, had the bright red rash (in my case, EVERYWHERE) and wound up with my skin peeling (again, EVERYWHERE). I remember my mother changing sheets every morning because of all of the skin I had sloughed off during the night. Oh, and I am not Asian at all.. I am of European decent. (German, Scottish, English, etc.)
I agree it is a miracle I have survived. I remember as a kid in gym classes feeling bad while running, etc. Thinking back, it was actually chest pains like I have had later in life.
Of course, as a child back then I was told things like "keep running, you are just out of shape" It is miraculous that I did not have a heart attack and die during one of those classes.
Oh, I have also had many other health problems as well. I have had several bone and joint surgeries. The "worst" was in 1981. I had a condition called "pectus excavatum" (my sternum and ribs grew incorrectly) My sternum actually rotated 90 degrees from top to bottom. To bad that they did not do a cath back then to check my heart. I am sure I would have healed much quicker back then!
You are right about having a lot of things done! Since June of 2007 I have had a total of 7 heart caths, and one bypass surgery. It has gotten to the point that the cath team (including the doctors...) have gotten to know me, and we actually joke with each other in the lab! Sorry for this pun, but it sure makes things more "lighthearted!"
Please, ask any questions you may have. I will try to answer as best as I can.
Oh, for your daughters sake, you might ask to see if you can get cd's or tapes of the any heart cath procedures. I have gotten them for all of mine. It has come in handy a couple of times. Like when I have been out of state for something.
I am going to TRY to upload an mpg file of my original cath. It shows both types of the typical KD arterial damage.
Good Luck!

valbytx
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Re: 46 year old survivor

Post by valbytx » Mon Jan 19, 2009 6:11 pm

Your story is very interesting and similar to mine. I had a heart attack in July 08. Very surprising for a 42 year old completely healthy female. Doctors were confused, performed a heart cath and saw about 6 aneurysms. The dr that did the heart cath actually said he needed to go do some research because he had never seen anything like this in 20 years of practice. A surgeon consulted later and asked if I had ever had a really bad virus as a child. I couldn't recall anything at the time, but they believed it was something called Kawasaki disease and performed a quadruple bypass the next day.
I later recalled that my mother had recorded I had "scarletina" as a child in the late '60s. I now believe this was Kawasaki. I too grew up in the midwest - Ohio and always had difficulty running. I wonder if this had anything to do with it! Thanks for your story. It is good to know I am not alone in this experience!

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Joe
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Re: 46 year old survivor

Post by Joe » Mon Jan 19, 2009 6:41 pm

Wow, amazing stories. If you have the video and want help, I can host it here for you. Let me know.

miami
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Re: 46 year old survivor

Post by miami » Tue Jan 20, 2009 10:26 am

Wow-
These are truly amazing stories. As much as we suffer here as parents with children that have developed heart issues, at least WE KNOW WHAT WE ARE DEALING WITH. We know what symptoms to look for, we follow up with cardiologists, etc.
I can't imagine dealing with heart issues when you think that you are perfectly health, then the big surprise. Thanks for these stories - true miracles.
May God Bless You.

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Re: 46 year old survivor

Post by Alexasmom » Wed Jan 21, 2009 7:36 pm

Hello,
I too am a heart patient, having irregular ekg's, alarming stress tests which have sent me directly to the hospital for a heart cath, and PVC's which occur every other heartbeat. I also have mild valve regurgitation. I am well below normal weight level; have low blood pressure and just recently was diagnosed with slightly higher cholesterol levels. Doctor believes I've either had a heart attack at some time or have had myocarditis. I have muscle damage to my heart which is evident on my echo's. I too was diagnosed at the age of 15 months back in 1963 with scarlet fever. As we all know, kawasaki disease was unknown at that time. I have been treating with a rheumatologist for the past 5 years for arthritis of my knees. I also have Raynaud's Disease and Ulcerative Colitis (an autoimmune disease). All of the above diagnoses have been given within the past 5 years.

My daughter, who is 9 yrs old now, had kawasaki disease at the age of 5. She had a completely classic case, all of the symptoms and was treated with IVIG followed by 6 weeks of aspirin therapy. Fortunately she has had no heart involvement to date. However, in retrospect, as my mother learned of my daughters' symptoms, she realized that they were exactly the same symptoms I had when I had "scarlet fever" when i was 15 months old.

I have 7 siblings, none of whom had this illness with me as a child, I was the only one sick in the household at the time. None of my siblings, ages between 41 through 60, have any of the symptoms or diseases which I have. They are all extremely healthy, with the most serious health problem being slightly higher blood pressure.

I cannot help but wonder how many people in our age group, who were diagnosed with scarlet fever many years ago, are now exhibiting problems with their heart, joints or other autoimmune diseases. I've asked my doctor if i could have had kawasaki disease instead of scarlet fever and he claims there is no way to know this. I am very grateful that my daughter was finally diagnosed, (after many misdiagnoses), and treated in time with IVIG. Hopefully her future will be much better since she was treated in time; but as we all know, time will only tell.

Pat

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Re: 46 year old survivor

Post by Momcat » Wed Jan 21, 2009 11:20 pm

Rascotttx:
Thanks for the thoughts on the CDs of my daughters tests. I hadn't thought of that.
I just can't imagine not having ANY test show that you had problems, for sure you gave the cardiologists a jolt on that first angio! Was it like, I TOLD YOU SOMETHING WAS WRONG WITH ME!?! Sheesh, a normal clogged artery would have been a whole lot better than aneurysms from undiagnosed KD.
I can't help but marvel at all those stents. Is there any chance at all that you will need another bypass? Is that possible? The stenosis that you had came into the areas where the veins were connected or in what segments of the graft? It sounds like they have done all those stents since the grafts.
Do you have any heart muscle damage?
I've heard that the "sting of pearls" are some of the worst to have with aneurysms and I am afraid this could be where my daughter might be headed with these long aneurysms. One is a large bell shape and the other is long and saccular. It is truly amazing that you made it so long with such damage. I am still shaking my head at your story. I suppose you are taking Plavix or warfarin and aspirin. Do you have to take other meds?
What a life concept change of events you have been through. Your kids and wife also.....
I cringed when you talked about PE and that they made you run when you felt bad. Ugh!
Interesting about your bone and joint problems. There is another adult that posts on this site that also has had a lot of spinal problems and joint problems. Yours seem very severe. I have a feeling a lot of praying has gone out for you!!
Thanks for your positive attitude and willingness to share your story.....I am in awe!

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Jan 23, 2009 11:29 am

Momcat,
That is bascially what happened when the cardio saw the first images of my arteries.
The angio was the first test that showed any abnormalities. I had even had a nucl perfusion test done. It was fine. From what I have been told by some of the docs, most of the tests are designed to find "point irregularities." That basically means they would spot a stenosis in a small area. KD damage is diffuse and spread out.
Yes, I have been told that I will most likely need to have another bypass done in the future. My cardio has actually wanted me to have a second one done already because of the blockages in the graft to my RCA. The surgeons don't want to do it because the blockages at this time are only in a single vessel. At times I feel like a medical ping pong ball getting bounced from doctor to doctor. I have a had stenosis develop in several places. They have happened in the native arteries after the graft, in the grafts, within stents placed within grafts, etc. It has been quite a battle over the last couple of years. You are also correct that ALL of the stents have been post cabg. From things I have now seen/heard/read it would appear that using the typical SVG can be an issue. It turns out that the SVG's don't always hold up well to arterial pressure, especially if like us there may have been some other vascular disease process. Even with all of my problems, I am fortunate. It appears that all of this was found BEFORE any MI's so I have very little or no muscle damage that can be found. (no damage, no issues on stress tests.... This is what is so confusing to the docs.) They want to see damage to find the problem. When someone comes in and says "I have a problem" and they can't find it on standard tests they believe that there is nothing to find, and think it is all "in our heads" or whatever else they like to say on that day. It can be VERY difficult to get them to LISTEN to us. Oh, and it can be even more "fun" as an adult trying to deal with things like medical and disability insurance! Tell them you had a "childhood disease that damaged my heart and no one knew it" and you can get some really strange questions and long silent pauses from them on the phone.
Oh, I am still working on the video stuff. I need to block some info on it so it doesn't show up.
rascotttx

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Re: 46 year old survivor

Post by Momcat » Sat Jan 24, 2009 10:41 am

KD is such a mystery to the medical community, from all angles I guess. It is hard enough to finally get the diagnosis, but you still have to fight your way through the medical system to be heard all the time.....it doesn't seem to matter where you are in the process. My daughter will never be able to get life insurance that is for sure! It took months before our insurance decided to pay for the air flight she had to take to the hospital across the state-plus 2 ambulances at both ends--back in 2003 it was about $17,000, I doubt they would pay it today! It doesn't seem to ever end when you have long term issues. We just had her 4th nose cauterization and she seems to be doing well with it now. No nosebleeds since. I am wondering what the next hurdle is. I think it has been 2 years since the last angiogram.
I was wondering if you had any of those drug-eluting stents put in? If so, were they re-stenosing at the same rate as the regular stents? I''ve heard both sides of that argument.
This question of trying to get a bypass done or not is something we have run into. No one wants to do one unless there is a blockage. They say that the artery has to be constricted enough from the stenosis for the graft to take over the blood flow. They say it will fail if there is too much flow through the original artery. So, then you think, OK, you have maybe ONE blockage and the other arteries aren't........do they wait until you have a heart attack from the one blockage BEFORE they do the bypass and THEN would they do the other artery?? I've also wondered, surely they must have some cases where they could "tie off" (my words) the aneurysm so the blood flow would go into the graft.......maybe that is impossible, but I bet it has been done. It would be interesting to know how the Japanese have dealt with these huge aneurysms. I've checked into seeing if the aneurysms could be resectioned, but that is really tricky. I did read one research article that said the younger you are with bypass, the less heart involvement in the future. I was unclear why, but it seemed to do with the reserve flow and the left ventricle. So, we just sit here with super giant aneurysms and WAIT. Then there is the problem of listening to each specialist tell you that different tests are the best........and the very best one seems to be a 64 slice CT, but no one wants to expose a child to that much radiation. So, they sort of sit and wait for a problem to occur. This is hard when you want to do the best for your child, but you don't want them hurt in the process and you also don't want to wait so long that you look back and say I SHOULD HAVE. It is hard enough living with the fact that you watched your child get a horrendous disease right in front of you and there was NOTHING you can do about it. The pain of all this is unreal sometimes and I constantly have to be giving the worry to God to move through my days without going nuts. I also need to make sure I don't scare the wits out of my daughter too....... I have to admit, I've been forced to GROW and deal with things I'd never thought would be in my life.
I can't imagine living with the problems you have presented. You must take in some really inward thoughts about the future and what can be done so they could give you answers......the CABG should have given you that peace, yet then you end up with stents and stents........ugh!! Then your options seem to be, more stents rather than letting the grafts occlude......there is no fine line. I can see why your cardiologists are baffled. I doubt they have anyone to compare you to. I wonder why they used veins from the legs rather than the mammary or thoracic arteries-did they tell you why?

award
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Re: 46 year old survivor

Post by award » Sun Jan 25, 2009 11:56 am

I am not sure if you realize how incredible this is....but you all clearly had KD well BEFORE it was thought to be in the U.S. The thought is that KD didn't seem to spread here until the 1970's via Hawaii and it was simultaneously recognized in both Japan and Hawaii in an outbreak that occurred at that point in both areas. Obviously Dr. Kawasaki noted kids with this syndrome in the 1960's but it really wasn't thought to be much of an issue in the 1960's here. Clearly it was and because no ne knew what it was and because it looked so much like Scarlet fever, it was just misdiagnosed as scarlet fever.
I have copied and pasted your posts to one of the major players in KD--Dr. Jane Burns at UCSD. I thought it would be good for her to see more cases, although my guess is, this isn't news to her since she knows absolutely everything about KD.

Glad to know you are doing well--I have seen quite a few 30-40 year olds die of heart conditions in my years in the ER and ICU and suspect it is much more prevalent than we know.

April Ward RN, MS NP/PA
Not an expert on this site
I am a Kawasaki mom

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MikesMom
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Re: 46 year old survivor

Post by MikesMom » Sun Jan 25, 2009 1:13 pm

Wow!!! Just reading this post now. Like Momcat I would like to know as much as you can share.
My son Michael had by-pass surgery Nov 2007, he got KD in 1996 at 18 months and had his surgery at 13years of age. You said you had a nuclear perfusion scan and nothing was found, that really scares me. In August 2007 Michael had his yearly nuclear stress test and they found a slight change in blood flow comparing to his 5 previous nuclear stress tests. I was told not to worry at fist as it was just a small change, they did the heart cath end of Sept 2007 and that is when they found one 100% blockage and one 50% blockage. They by-passed the 100% blockage and are closely watching the 50%, as Momcat stated as he is getting 50% blood flow the graft would fail as it would be competing with the 50% flow getting in. The repeated the nuclear stress test in August 2008 with no further changes found, and repearted the heart cath in Nov 2008, by-pass flow was great and the 50% had not changed since the prior heart cath. Michael has gone 6 years without a heart cath (Nov 2001 the begining stage of stenosis was discovered), until that nuclear stress test found a small change and then the heart cath was repeated. I was under the impression that because his yearly 5 nuclear stress tests where okay things were okay, the shock when a small change in blood flow resulted in a major change to his arteries, that was when I found out that the nuclear stress test was not as reliable as the heart cath but still believed that some sort of change should show up. Hearing that yours showed nothing wrong and that Michael's showed only a slight change in blood flow that explains more as to why we were so shocked with the hearth cath results. Michael ended up with a large hematoma is his calf three days after this heart cath which could be just a fluk, but it was enought to scare us and worry if he has to have yearly caths now, but also scares me that the nuclear stress test alone is not enough to keep a check on changes. Where your blockages calcified? Are you on beta-blockers now? Are you on lipitor? The re-stenting is that because of using the leg arteries? Touch wood Michael's graft is not showing any re-stenosis and they did use his chest artery for the by-pass, we know it is just a matter of time before he goes back to by-pass the second blockage they have told us that.

Thank you for posting on this site, please keep us posted!
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

award
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Re: 46 year old survivor

Post by award » Mon Jan 26, 2009 1:12 am

Anyone who posted about having KD in the 1960's, please contact Jane Burns at UC San Diego, she is very eager to enroll you in her study--here is her reply to my email(as mentioned above in my message earlier) and her contact information. It was relatively easy to do the study--a tad inconveniencing to get the blood drawn at a local lab and send back overnight shipping but not too bad when we did it. No need to have to go to San Diego directly so please consider it.

Thanks much!



Dear April,

Actually we have studied the history of KD and have documented that KD existed here in the U.S. and Western Europe during the early part of the 20th century. It was only new to Japan (and perhaps other Asian countries) following WWII. I have attached some of our papers on the history of KD.

But thanks for forwarding these reports. We would like to have these individuals participate in our DNA study. Could you contact them on my behalf and ask that they email me to find out more about participating? That would be really helpful

Thanks.

All the best,

Jane


Jane C. Burns, M.D.

Professor and Chief, Division of Allergy,

Director, Kawasaki Disease Research Center

Immunology, and Rheumatology

Dept. of Pediatrics-0641

UCSD School of Medicine

9500 Gilman Dr.

La Jolla, CA 92093-0641



Tel 858-246-0155

FAX 858-246-0156



jcburns@ucsd.edu

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Mon Jan 26, 2009 1:16 pm

Hello all,
As suggested, I have sent an email to Dr. Burns. Maybe as more of us are "discovered" it can lead to a clue to what is really going on.
I have had a total of 7 (yes SEVEN) caths done since June of 2007. The first one was where my aneurysms and the "string of pearls" damage was discovered.
It was rather nerve wracking to have the cariologist tell me that I had problems, call my wife in, and then call other cardiolgists and surgeons in to see what he saw.
Oh, this was while I still had the catheter in! After what seemed like an eternity (about 20 minutes) they finally decided that I needed to have a bypass done.
One question I have, is if any other things should be checked? All of this has centered around my heart, but I am curious if any damage could have been elsewhere.
I have an EXTREME sensity to caffeine. It causes horrible headaches for me. I am curious if there could be some sort of arterial issue?
I am sorry to hear about the hemotoma. So far, I have not had any complications from the caths. Oh, someone asked if I had had any heart damage. I am happy to report that so far nothing has been found. Of course, when tests come back "normal" and then issues are found during a cath, I sometimes wonder just how accurate the tests really are.
I can't imagine having a child go through this and not be able to get them help. If anyone has any specific questions, please ask. I know I can't think of everything when I post replies.
rascotttx

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Re: 46 year old survivor

Post by Momcat » Mon Jan 26, 2009 4:03 pm

It is amazing to me that you never got a clot in any of those aneurysms without blood thinners. Had you been on any blood thinners, like aspirin before you found out about the aneurysms?
Yikes! AWAKE during the cath,...ugh, I can't imagine that. I've heard they are terribly uncomfortable if you are awake. My daughter has had 2 - probably due for another one - and they always put her out.
Sometimes (rarely) there are other aneurysms in other arteries, I think the 2nd place they look is around the liver and kidneys. I believe they can check these during the heart caths. There are other ways to do vascular imaging also I've heard. Dr. Burns has suggested that our daughter get her other arteries checked. I know during the first cath they said they didn't see any in other areas and they also did an ultrasound. A lot of long term KD people say they have headache issues. When you consider how traumatic the vasculitis is, then it does make you wonder about capillaries, etc. Here is an interesting article I found because I remembered it when thinking about the carotid having a thickening in KD patients:
http://www.pubmedcentral.nih.gov/articl ... id=2396619
You have read the newer reports regarding the heart muscle having myocardial fiborisis in long term KD haven't you? Dr. Burns is recalling KD patients for that study. I don't know what the percentages of KD patients show this, but I think they are finding out that either the acute damage slowly affects the heart or perhaps there is an ongoing issue with KD (like this oxidative study I posted above)....I'm just a mom so I don't totally understand all of this...but you might find out from Dr. Burns just what they look for to see if the heart muscle has the fibrosis or not.
Here is an article on other aneurysms in association with KD-remember, they are fairly rare, but sheesh! so are aneurysms like yours!
http://www.mdconsult.com/das/book/body/ ... 5/633.html
I hope you have good medical insurance. Did you have to take a whole ton of time off work or quit your job to live around all these surgeries? How long does it take to recover from having a stent placed? I admire your wife and family, they have to have gone through a lot also.
Do you have any of those drug-eluting stents?
I hope you can post a photo of your aneurysms that you had if they gave you one.

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