46 year old survivor

Personal stories of individuals and families affected by Kawasaki disease
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MikesMom
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Re: 46 year old survivor

Post by MikesMom » Sat Aug 21, 2010 3:32 pm

How did I know you where going to say that! I know right now I am still feeing alittle unnervy with the nuclear stress test as the year they found a slight problem turned out to be a big problem once they did the cath. Between that cath and the one prior was six years, the one six years ago found the begining of stenosis and within 6 years it became completely blocked and a second one had started and reached 50% blockage. It get concerned that that 50% one has been three years now, after a year it had not changed but we are now another 2 years in, I am hoping in October they will order a new cath just to be safe.
Thanks
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

jerse0440
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Re: 46 year old survivor

Post by jerse0440 » Sat Oct 02, 2010 6:57 am

Bob,
Thanks for your reply to my question about the echo. Your story is quite unbelievable - all of those standard tests not showing damage. You are so blessed that they took this seriously and took a closer look. Thank you again for being kind enough to share your information with the community.

I am wondering if you have talked with Jane Burns? Did she share any thoughts as to why so much damage was not evident on the standard diagnostic tests? I hope that anyone with ongoing undiagnosed cardiac symptoms can use your story when discussing things with a cardiologist.

I hope you are continuing to do well and do wish you the very best.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Sun Oct 10, 2010 2:51 pm

jerse0440,
You are quite welcome for the reply. I hope I can be of assistance to someone!
Yes, it is strange nothing showed on all the "normal" tests. I am not sure why, (haven't asked...) maybe the echos only show the exterior of the arteries? If so, could be that the external part had regressed to "normal" size, with evidence only "detectable" on the interior walls? Also, at the time I had not had an actual heart attack, so there had been NO cardiac muscle damage done that would show up on any of the tests. Don't know. Pure speculation.
Yes, I have spoken with Dr. Burns. I actually was one of the first few people in the adult study. Actually went to SD to take part. Went through an entire series of tests there.
They had no explanation for why the damage was not evident, except on the angio. They were interested in the video files I took to them of that though...
Yes, if you ask nicely, you can usually get most anything from the hospitals or docs for documentation.
(Although it helps when you have friends that work at the hosptial! If they are involved in the cath lab it is even better!.. )
The really "sad" part is that a WEEK (yep, only seven days..) AFTER the testing there in SD for the project, I had a mild heart attack. Go figure. Oh, and yes I did let them know about what happened.
I guess I am "fated" to just remain a "mystery" to all of them!
It is my understanding that, they really want to do all of the testing themselves to eliminate any variability in testing with different equipment, etc.

Here is a question for everyone... Does anyone know how old the oldest KNOWN KD survivor is? Just curious...

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Thu Jun 23, 2011 3:21 pm

Well, it has been a long time since I posted anything. I am happy to say that so far nothing else has happened.
It has now been over a year since I had a cath! HOORAY! ( I hope I didn't just jinx myself..... :) )

I had asked this some time ago, and got no responses. So, I will ask again.

Does anyone know how old the oldest KNOWN KD survivor is? Just curious...rascotttx

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Thu Jun 23, 2011 4:06 pm

If anyone is intersted, these are images of my first cath. For some reason the originaly posted images were deleted.
rascotttx
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rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Sep 21, 2012 4:18 pm

It has been a long time since I posted anything.
I made it 2 and half years between caths! For me, that is remarkable. I had averaged about every 3 months, sadly.
So, I am happy I made it that long. I got one new stent (total now 20 yes, twenty) and two areas were ballooned.
I had been feeling poorly, and having chest pains. Of course, as per usual, nothing showed up when I had a SPECT scan done.
I had a normally scheduled visit with my Dr. and we decided that it was time to go take a look.
I am glad we did! I now am feeling much better. I am still sore (cath was Wed afternoon).
It was done in the cardiology practices new cath lab. Nice to go home the same day it is done!
Hope all is well.

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lundgrk
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Re: 46 year old survivor

Post by lundgrk » Tue Mar 26, 2013 4:58 pm

Thanks for your stories...

I'm 38 years old had an acute MI in early December of 2012. In my case, I didn't experience any of the typical chest pain or pressure. I woke up in the middle of the night with cold sweats and what I would describe as a cold esophagus, as if I swallowed ice cubes. To make a long story short... Emergency room... Cath lab... 1 stent in my ramus... ICU for 3 days...

Afterwords in the ICU, My cardiologist asked if I had ever had KD. Apparently, the arteries in my heart are not normal. Until then I had never heard of KD, but I remember being told I had scarlet fever as a young child.

Today, I'm feeling pretty well. I take my beta blocker, ace inhibitor, Plavix and 325mg asprin. I will be finishing cardiac rehab at the end of this week and don't have any chest pain or shortness of breath, even after running (4.5mph) for 20 minutes on the treadmill.

I'm not sure what to expect going forward, but I feel a whole lot better than I did in December.

K

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Thu Mar 28, 2013 3:53 pm

Glad to share.
I hope all is well.
At this point my Cardiologist has basically told me that he can't keep stenting me, and can't find a surgeon to work on me. Not much fun being stuck like this.
I now have so many stents that any more would likely wind up being placed where they would preclude ever having the bypasses redone. And in some places I have three layers of stents currently. I am now battling with a disability insurance company that says they think I can work, and my Dr. says that anyone that thinks I should work is crazy.\
Can you imagine trying to get on a new employers health insurance?! HA HA. That won't happen!\
I really hope the sake of all those who have or had this disease that they can find a cure, not just a treatment of the symptoms!

cmorey81
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Re: 46 year old survivor

Post by cmorey81 » Fri May 17, 2013 3:38 am

Rascotttx,
If you don't mind me asking, what did your your chest pain start out like? We're you ever diagnosed with "runner's" asthma? I had kd in '83 and I started having trouble running in 8th grade, one day I was fine in gym (other than I was always weaker than my classmates) and the next day I felt like I had a vice around my lungs when I was running. Now I'm in my 30's and I'm starting to wonder if what I have been feeling is actually angina. I don't generally wheez so much as I have pressure on my chest and it feels like my lungs can't expand. If I push it after feeling this way I start to feel like my heart is going to beat out of my chest. I haven't had a single heart test done since I was little, the doctors led us to believe I was in the clear. If an angio is the only test that shows the problems should I try to push for for one early on?

Oh, I've also always been really sensitive to the cold/heat, and I also get headaches (I was diagnosed with migraines when I hit puberty). I have really bad joint pain too which seems to be a running trend. It's crazy all of th little things I never thought might stem from that childhood disease!

Sorry for all the questions and thank you in advance for any information you can give me.

Crystal

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Mon May 20, 2013 2:32 pm

No problem with asking questions, that is how we all learn.
My chest pain started with a feeling like someone had hit me in the chest with a hammer. Not "real" hard, but hard enough to get my attention!
No, I was never diagnosed with any type of asthma.
Your description of what you have felt like a "vice" around your chest is a very typical manifestation of angina!
I would not be at all surprised if it were! I have never wheezed that I know of (except with the usual bronchitis, etc.)
I have had the feeling where it felt like my heart would beat out of my chest!!
I would HIGHLY recommend getting an appointment to talk with a cardiologist! I know it is scary, but they CAN help if any issues are found!
DO NOT let them push you around about this! It is YOUR body and you alone know what it really feels like.
The Doctors are people to, the only real difference is that they have just been in school longer!
That does NOT make them "smarter" than anyone else. If you get a good Dr. they WILL listen. If not, find another who will. We adults that had KD are in such a minority that most cardiologists have NO idea how to deal with us, let alone the children. Mine has even told me that he has basically "thrown away the books" when dealing with me. Not much fun!
Interesting to hear someone else has had issues with heat/cold as well. Nice to know I am not "alone" in this!
And I also used to have many migraines. Traced mine down to caffeine. Thinking about it, it is a vasodilator, and KD does affect the entire body, but PRIMARILY the heart.
PLEASE, do yourself a favor and get checked.
Bob

cmorey81
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Re: 46 year old survivor

Post by cmorey81 » Wed May 29, 2013 1:05 pm

I had a trip to the ER yesterday because I've had a feeling of pressure on my chest, like someone put a weight on my sternum. Then yesterday I got pain in my upper back like someone punched me on either side of my spine making the muscles almost feel bruised, followed by feeling extremely tired. I informed the doctors that I had Kawasaki Disease first thing, but they didn't seem to be too interested. They did an EKG, a chest x-ray, and blood work, all came back fine so they sent me home with some naproxen for the "muscle pain". I asked for a follow-up with a cardiologist but because my heart appears to be fine they said it wasn't necessary. My doctor also refuses to to give me a referral. It's extremely frustrating to feel like something is wrong and have them totally ignore you, like you actually WANT to spend 6 hours in an ER because you need the attention or something! Any tips on how to make them take you seriously? I have military insurance so I have to go through the proper channels which adds to the frustration. Thanks in advance for any advice you can give me.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Mon Jun 03, 2013 10:59 pm

I wish I could give you a "magic formula" but I can't.
I am not sure how old you are, but you might actually try calling a pediatric cardiologist and tell them what is going on, and ask for their assistance.
They may be able to get an adult cardiologist to listen to them! (I would hope anyway....)
After all, KD is a childhood disease, and there are those of us adults who had DO have problems.
Not that it is any fun though.
I have been EXTREMELY fortunate with my doctors. Even though my cardiologist has one of the oldest practices here, he is very "up to date" with what is going on.
I can tell you it is NO fun to surprise them during a heart cath when they find the KD damage the first time.
It was a very frightening experience, that I would wish on NO ONE!
Bob

kdwife
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Re: 46 year old survivor

Post by kdwife » Thu Jul 18, 2013 8:02 pm

Hello,
First of all, thank you for sharing your story. My husband had Kawasaki Disease at the age of 9 months back in 1978. He was one of the few cases diagnosed in the US at the time--however, the doctor's didn't know what to do with him so they just took spinal taps until his mom got frustrated and took him home. He had major aneurysms in his heart, but no one knew and his heart was never monitored. I posted his story on the forum back in 2010. Long story short, he started having angina in April of 2010 and was treated for asthma (no relief), virus (antibiotics)--no relief, etc. It took 3 months to get his doctors to schedule a stress test because all his test came back crystal clear--chest X-ray, blood work, EKG, etc (and he was a very healthy looking 33 year old). He failed the stress test, but they were ready to write it off as a flaw until I told them he had Kawasaki Disease as a baby. Luckily we were in LA at the time at a hospital that understood KD. One phone call to the pediatric cardiology dept and he was set up with an angiogram. 3 days later he had the triple bypass. He had triple bypass at the age of 33 due to scarring in his heart. When they finally listened to him and did the right test, he had a 100% blockage, a 90% blockage and an 85% blockage due to scar tissue. No cholesterol. His heart had been fighting the scarring for so long, the arteries had actually grown to the other side to try to compensate for the blockages in the other arteries. He was never able to do sports as a child and was very sick for much of his young childhood. I can't stress enough the dangers of untreated KD. Much like your story, they brought the entire team of cardiologist in to see his angiogram results because he was such a rare case. He was a famous case at the hospital. Lots of doctors and nurses came by to ask about him. Other than collapsing 3 weeks after his surgery and being rushed to the ER with blood pressure issues, he has done great. (Other than an emergency appendectomy he had a year after his bypass--which caused lots of controversy because he was on Plavix) This week he shared with me that he was beginning to have mild angina again after running around with our children. He works on his feet all day, works out, but the pain hit him after mild running around in the yard. We have moved states since his surgery and he is going to meet with a new cardiologist. We are not sure if this is normal or whether he is having issues with any of the bypass locations. Did your doctors find your bypass sites built up scar tissue similar to the aneurysm sites? He hasn't been feeling well lately and I worry that the doctors won't know what to look for. How long did your first bypass last before you needed follow up procedures? We were told he should be fine for 10-15 years, so mild angina 3 years later is setting off little bells for me. They used a lot of state of the art things on him and he has been on meds, but I feel that KD is a foreign territory for many cardiologists. I hope you are doing well and have many years of heath a head of you!

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Thu Aug 01, 2013 3:39 pm

KDwife,
Sorry it has been a while since I checked the forum.
Unfortunately, yes, my bypasses have been scarring as well.
As to how long it was before I needed to have something else done, it was about 10 weeks after the bypass surgery. Yep, just under three months.
I wound up in the ER having chest pains and feeling really bad. Unbelievably the ER doc wanted to send me home. My blood work was "normal," and since I had just HAD bypass surgery it "couldn't" be my heart. I was lucky. My wife TOLD him she was not taking me home until the cardiologist looked me over. And to emphasize the point, LEFT hospital and went home for the night!! I was stuck there whether I wanted it or not! When the cardiologist finally came around, he basically said that under "normal," circumstances he would have agreed with the ER doc, but with MY history, it was time to go to the cath lab. A few hours later I had six brand new stents, less than 3 months after bypass.
My wife leaving me there did cause some hard times for us. At the time I took it that she did not really care what happened to me. After MANY hours of talk/therapy, etc. we found out that it was just her way of dealing with the stress and emphasizing what she thought had to be done. We now joke about her being an "ice queen" for being so cold and calculating with her actions!
I did not get to go back to work then, and have not worked since. My doc has said "anybody that thinks I should be working is crazy." Not much fun for a mid aged man with a wife and two small children (that are now 9 and 11.) Boys at that. I can NOT keep up with them, and yes I have tried. Doesn't work. I wind up having moderate to severe chest pains under physical, and believe it or not, mental, stress. Nitro tablets and pain meds can become good friends, even if you don't like other things that they do. At least the pain either goes away, or is minimized.
Do NOT wait. Make the appointment FOR him even if doesn't want to go. Get him in to the Dr. as soon as you can, especially since he already has a history of arterial scarring. Also, make absolutely CERTAIN that his new Doctor knows his COMPLETE cardiac history. It is ALWAYS better to get things checked and find out you are okay than to wait and have bad things happen.
I am now up to a total of 20 (yes.. 20) stents after my bypass surgery. In places there are actually 3 "layers" of stents. They overlap end end due to, you guessed it, scarring around the end of the stent. Oh, I had also been told to expect that the bypasses should last at least ten years! So much for that estimate. After all it is medical "practice," as opposed to absolute medical "science." My Doc has even said he has basically "thrown out" all of the medical texts as my problems are so unusual!
My cardiologist has said he wants me to have the bypass surgery redone, which I am willing to do, but we can not find a surgeon that wants to touch me "yet." It is a really bad place to be KNOWING that you need to have something done, and can't get it done. He is also getting reluctant about placing any more stents. It is getting to the point that the likely places for them are where a new bypass would "land." If there is a stent there, no bypass, as it can NOT be done. Yikes!
Yes, it is frustrating, and depressing. It is amazing what not being "able" or "allowed" to work can do to someone that WANTS to provide for their family. Fortunately, there is SSID, and in my case I was also wise enough to have purchased long term disability insurance through my last employer. Even though they wanted to stop paying after two years and I had to go through a LENGTHY appeals process with them. And I just finished battling them for the second time. Yes, I prevailed. Thank GOD!
My apologies for the rambling response, but PLEASE get him checked out. It may well be the best gift you can give your husband!

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Mar 04, 2016 9:49 pm

Well, I am still here!!
Yeah me!
If things keep going as they are, and I make it until September it will have been an incredible 4 years without any interventions!!!
It seems that maybe things have actually stabilized.
Sadly, the cardiologist I have been seeing has now retired. At my last visit he told me I would now be seeing his nephew as my doc.
I do not look forward to that first visit.
Original has said that there really is not anything that can be done as new stents if needed. If they put one where the is not already one, it would mean that there would be NO chance of redoing my cabg.
We did briefly discuss transplant, but due to family issues that is temporarily out.
(Wife lost her job, got caught up in an engineering layoff and is seeking new employment elsewhere.)
Plus I not yet really "sick" enough to have that done. He said if we knew we would be here long term that he would start the process for transplant evaluation. But it is highly likely we will have to move.
Oh, fun. All new doctors. Yikes!!
Well, I thought I would post a status update for anyone interested.
rascotttx

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