46 year old survivor

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

Post by liquidambar » Fri Aug 06, 2010 11:03 am

KCLP
Heat and cold intolence is yet another symptom of mitochondrial cyopathy.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Aug 06, 2010 1:37 pm

KCLP,

No problem with answering the questions. You never know when some seemingly insignificant detail may lead to something. Just like the engineering field.

Yep, 70s PE was not much fun. I do remember the boys and girls being separated though.
No scoliosis. Just the Pectus issues. And I was even surprised I passed the physicals. I had to go through several more of them than most.
The closet AFB medical center would not approve me. The ROTC unit had to send me a regional center. What a trip. Got there and they took a chest X-ray.
The flight surgeon brought it in to the exam room, put it up on the light box, looked at it for about 2 or 3 seconds, and said ""Yep, you're all there" and signed me off!
The BP and cholesterol issues showed up after college. After missing out on my desired career path, I basically let myself go. Gained quite a bit of weight, etc.
Had some minor thing crop up, went to the GP, and of course they check that. Surprise, they were high.
When I turned 40 my wife pushed me to go get a good baseline physical and cardiac workup. The normal blood tests, etc. AND a stress test. ALL okay.
About 6 years later things were to change...
Actually about 4 years later, I went to the GP thinking I had an ear infection. Of course they take vitals...
My pulse was at about 120, RESTING.
Sent me the cardiolgist. EKG time. Oh, and also a 24 hour holter monitor.
Only thing to show up was some PVC's (pre ventricual contractions), so I got put on a betablocker (Toprol).
Two years later...
I started having chest pains, etc. and went through the normal GP, who sent me to the Cardiologist.
Oh, and one of my unusual symptoms, especially for a male, was pain between my shoulder blades.
I saw the cardiolgist, had the workup, found NOTHING unusual.
About 10 or so days later, I was still feeling really bad, and hurting worse. Called in to the Cardiologists office.
The only person I could see quickly was his nurse practioner. Went in to see her. She said the only thing left was a cath.

On the way to the hosp. for the cath I told my wife not to be surprised if they found something. She of course asked why I said that. My only response was "Instinct"
Made for a quiet ride the rest of the way.

Before the cath, the doc came in and said "lets get this done so we can move on to whatever the problem really is" or something like that.
He then gave me the local in the groin (that is the worst part of the cath, that is a large needle....)
A few seconds later, he said I am already in your heart. Surprised me, as Ifelt nothing. He said the arteries themselves have no pain sensing nerves.
He injected the dye in to a ventricle and said, that looks really good, no problem there.
He then went to the RCA. He injected the dye, and IMMEDIATELY went "hmmmm, hmmm, hmmm." I asked him if that was good or bad.
He said "You have some coronary disease there." And then started quizing me about my childhood medical history, and if I had had any strange viral diseasesm etc.
I told him that the only strange thing I remember was having had scarlet fever twice.
Well, he then continued on with the other arteries. More questions.
He then had a tech pull the monitor he was looking at around where I could see it. (Uh, oh! whats going on?)
He showed me all of the issues, TOLD me I had had KD,the damage was done when I was a child, and then asked if I had any family with me.
Of course my wife was there. He went out to see her, and then BROUGHT HER IN TO THE CATH LAB. He then started telling her what was going on and showing her
the issues while injecting more dye so they could see the issues. He then told us that he was going to go out of the lab and call some of his colleagues and surgeons to try to
decide what to do. My wife was standing by my side for probably a good twenty minutes while I was laying there with the catheter in my groin, unable to move.
About twenty minutes later, he came back and said "the decision has been made, you need surgery. When do you want to do it?" My response was "NOW!" NOT A GOOD DAY!
Turned out the surgeons and OR's were all busy or occupied, or they would have literally taken me from the cath lab to the OR. As it was I waited 2 days. Waiting in the hospital.
I had 3 (yes three) anueurysms (two in one artery, one in another), and long section (something like 4 or 5 inches worth) of the diffuse "string of pearls" type of damage in another.
Imagine the interesting phone calls to out of state relatives, and THEIR shock! Fortunately, my parents were already deceased.

I comepletely understand the question about the academics. I would think it very possible to have issues. I may have just been lucky, or who knows, I may have been a much
better student, etc. if I had not had it!
Yes, I have had my thyroid checked, many times. It has alway been normal. Nothing there.
Thinking about the temp sensitivity is interesting. Even before all of the heart surgery, etc. I had issues. There were times when I would get "cold spells." I would feel
like I was freezing. I would even be shivering. This would sometimes happen outdoors in 95F (or above)! I would have to go take a hot bath or shower to warm up! Strange.
rascotttx

jerse0440
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Re: 46 year old survivor

Post by jerse0440 » Fri Aug 06, 2010 5:30 pm

Thank you for sharing your story. It is good to see that you were cared for well and you are able to be healthy enough to be active with your family. I am wondering if they ever did an echocardiogram? Maybe that was never a test of choice for your situation but was just wondering about it. Thanks again for all or your information.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Aug 06, 2010 5:53 pm

Jerse0440,
I forgot to include that in the list. Yes, I had an echo done a few days before my first cath. Of course, like everything else, it did not show anything.
Because NOTHING seemed to show up on the "routine" tests, the cardiologist was all the MORE surprised. He had thought, well IF anything, maybe slight blockage somwhere.
Turns out the routine tests are great at finding a "point" or localized problem. Just not the diffuse, or spread out, problems like KD causes. The aneurysms I had were not "huge" or anything. The word the cardiolgist used was "Impressive." Not what you want to hear. To this day I don't know exactly how big they were. Of course, who knows what they were like when I was a child and the KD was in its accute phase.
rascotttx

KCLP
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Re: 46 year old survivor

Post by KCLP » Tue Aug 10, 2010 6:51 pm

rascotttx,

It does not make sense that problems do not show up if they are diffuse or spread out. The length of blockage or size of aneurysm should not make a difference. There should be some indication on the ECHO, EKG or Stress test that problems exist. Yours were "impressive" and you have had them since you were a kid.

At 40 when you had your cardiac work-up, all okay but, we know better now. Then at 44 a racing pulse, EKG and monitors and still nothing caught.

The Cath was the first indication of coronary disease-after years of warning signs that the GP's and Cardiologists did not pick up on.

Those first few months after DX and surgery must have been terribly taxing on you and your family. I can only imagine the disbelief and shock.

KCLP
Last edited by KCLP on Wed Mar 26, 2014 12:55 pm, edited 1 time in total.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Wed Aug 11, 2010 10:01 am

KCLP,
I understand the thinking about the tests showing the problems. My cardiologist is the one who told me that ALL of the "normal" testing is pointed at finding a localized problem. One thing to remember is that things like the SPECT scan look for actual cardial MUSCLE damage. At the time I had none. I had not had an actual heart attack yet. Even an EKG looks for electrical signals that are abnormal due to damage, be it muscle or nerve. In an aneurysm the blood is still flowing to the heart, provided that no stenosis (blockage) has formed. The diffuse KD damage in an artery is strange. At any ONE point there may only be a 5 or 10 percent blockage, which is not enough to damage anything. However, when you have a long (5 inches I was told in may case...) with MULTIPLE small blockages, they do some strange things. Oh, and the small blockages don't just "add up", mathmatically they multiply. Think of two 90% blockages. The total is actually .9x.9, or .81, or 81 percent. Keep that going and it may be a very large percentage total, but any one of them does not, and probably would not, cause an issue by itself. It may not be enough to damage the muscle, or even show up on a spect scan. My understanding of the SPECT scan is that it is looking for something called Oxygen perfusion in the muscle. Basically, is the muscle getting Oxygenated. When there is muscle damage (ischemia) the oxygen does not get to that tissue as it is basically dead. The test then shows areas where there is NO (or VERY little) oxygen. In my case, there was still oxygen getting to the muscle, just not enough. It was bad enough for me to feel poorly, but not to show up on the tests. I had been on medication for the heart rate issues. Once on the medication, everything straightened out and was fine.
Oh, and yes, the damage is presenting oddly to the doctors. Apparently, there have been MANY people who have had the aneurysms which have stenosed and caused problems. Probably even the diffuse damage. They were not taught to recognize the problem as having been caused by a childhood disease.
In this case, the doctors have been treating a "symptom" and not the underlying cause. It is one of the reasons that you will see apparently very healthy people, even with normal to LOW cholestrol and even no family history of cardiac problems having heart attacks. Oh, and think of the people you hear of who get a checkup, and have a massive heart attack within hours or days. Sometimes fatal. I had mine a week after having much testing, including a cardiac MRI. I was just lucky it wasn't really bad.
When you have the long, in depth discussions with the doctors, they will even tell you that NO test is perfect. There are false positives, which cause unnecessary procedures to be done on a healthy person (that is one of the reasons medical insurance can be so picky), and false NEGATIVES, where there IS a problem, it just is NOT seen. Sometimes even with multiple, or repeated testing. It is just sometimes something that the patient AND the doctors have to deal with. It is NOT that they did ANYTHING wrong, or did not try to find out what was causing my symptoms. The cath is considered the "gold standard" test for a reason. It VISUALLY shows what is going on with the arteries. And, it shows them "live." Basically, none of the other tests can really do that. They are either electrical (ECG), or have to have a computer process the data (which takes time, and sometimes massive computational power) to provide results.

I think that the first few days after the DX were the most taxing. None of us really knew anything, and were all understandably shocked. My wife, who had a HORRIBLE experience in a hospital as a child (she was burned in a kitchen accident), could only stay with me for SHORT periods of time. Seeing me with all of the typical heart patient catheters, breathing tube, etc. was very hard on her. Fortunately though, she is a very strong person. The rest of our families live out of state, so she was also pretty much alone, other than people from our church. It is definately something I would NOT recommend to anyone.... Even enemies.
rascotttx

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Wed Aug 11, 2010 3:01 pm

By the way, in my previous post about the percetage blockages. The .9 is actually the amount NOT blocked. It represents 10% blockage, with 90 percent flow.
Sorry for any confusion
rascotttx

KCLP
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Re: 46 year old survivor

Post by KCLP » Thu Aug 12, 2010 2:42 pm

rascotttx,

Amazing that you did not have a heart attack but, anuerisms w/ no stenosis in one and five inches of 10% blockage in the other - serious.

How/when will the Cardiologists (and most concerning ER doc's) learn to suspect/recognize problems caused by childhood disease. Low cholesterol, normal BP, no family history of heart disease, young age, perhaps female, or unusual presentation (such as yours - "Pain between the shoulder blades") can influence a delay in diagnosis and treatment. Add normal EKG's, and ECHO's and we have a serious problem. Too many people in this A-typical population are being sent home, only to have heart attacks.

I do not believe you are lucky. I truly think what you said - you followed your "instincts". Consistency and determination to find an answer was your powerful tool.

KCLP

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Thu Aug 12, 2010 4:32 pm

KCLP,
I agree. To many people are probably being turned away from treatment when it IS necessary. Also agree about being lucky and following my instincts.
The turning people away is an issue that I am not really sure how it can be addressed. I even fell in to this. After my original bypass I fell great for about 10 weeks.
Felt better than I could remember in a LONG time. Probably since I was a kid. It all changed one day. I was driving home and starting hurting and feeling really bad.
Of course, I tried to pass it off as just a bad day. It did not go away. My wife eventually took me in to the ER, after much urging from my in-laws. Of course when I got there, once I did the customary waiting, they did all of the blood work, EKG, etc. and the ER doc came in to see me. I of course had to wait on the test results. They were all okay. He wanted to send me home. My wife, however had other ideas. She looked at the doc and told him "I am NOT taking him home until a cardiologist checks him out!" She can be very convincing when she needs to be. I was admitted for "overnight observation." The cardiolgist came in the next moring, did his usual thourogh once over, and said, "your going to the cat lab." I got my first SIX stents that afternoon. AFTER the ER doc wanted to send me home? Needless to say, we were not happy with the ER doc, and never did see him again. So, I understand very well about people getting turned away. Who knows what would have happened if she had not stood up toe to toe with him!
Yes, having all of the tests turn up "normal" and then still having a very real problem is quite disconcerting! Oh, and when the blood work comes back with normal cardiac enzymes, and CRP it REALLY throws them. How do you diagnose a very real problem when the patient presents with symptoms, but there is NO substantiating evidence? Why do you think there malpractice insurance is so high? I don't think anything was done "wrong" or malicious at all. They are in a "darned if you do, darned if you don't" situation. Then they have to litteraly start guessing. And yes, sometimes the "scientific" or engineering fields have to do that. I have been there, done that. You then test your guess, and adjust as necessary. And yes, it IS taught as a technique in school! The first time I ran in to that in a calculus class I was dumbfounded! I had alway been taught mathmatics was the only "exact" science there was/is! Imagine the shock of college student being TOLD to guess at an answer, and then go back and see if it works!
rascotttx

Momcat
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Re: 46 year old survivor

Post by Momcat » Thu Aug 12, 2010 9:02 pm

Rascotttx,
Sorry, I am just now re-catching up with your story. I am glad you are still on here!

I am wondering (sorry if you already posted this info), if you had a normal stress echo? My daughter has had two and comes out at top percentages- she has 2 giant aneurysms and had KD for weeks. I imagine there is other damage that we cannot see regarding the linings of her arteries in areas where there are no aneurysms. The cardiologist keeps telling us that she doesn't need another angiogram unless the stress echo shows a problem. She hasn't had an angio in about 5 years. She is 13 years old and had KD when she was 6 years old. What do you think? I keep asking him and have even told him that we've seen some kids have problems without aneurysms, but he doesn't seem to want to do another angio.

Sandy

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Aug 13, 2010 10:02 am

Sandy,
Yes, I am still around. I just had to try to "take a break" from all of this!
As for any ECHO's I have had, they were normal ECHO's. Just what is a Stress ECHO, that is one I do not know anything about.
Oh, and the results were all normal as well. The last one I had (during a brief hospital stay because I started having problems again...) was done in the hospital room, and the CARDIOLOGIST was actually there and watching. Did not have to wait for any radiologist or anything that time! Nice to get IMMEDIATE feedback, and even have him directing the tech exactly where to look. I don't recall exactly, but I THINK he may have finally been able to see the anueurysms from some of his comments. He decided to NOT do another cath at the time, all blood work normal, EKG had not changed, ECHO okay. He did say that another reason was that although all of my caths have gone fine, with no problems, the statistics are getting bad enough that the numbers are going to catch up with me, probably, maybe. Also, that one invasive procedure typically leads to another, etc.. In my case my normal cardiologist has thought for 2 years I need to have the bypasses redone. Oh, the one that was at the echo is a partner in the card. practice with him. I have been told that I have been the "talk of the office" many times! Not exactly a "comforting" thought with things this serious! I think one of the worst things I have heard any of them say, other than the usual disclaimers for procedures, is that I am as stable NOW as I will EVER be! NOT what you, or your family want to hear! Basically we live with the knowldedge that there WILL be more problems, and we just have to be ready. It has gotten to the point that when my wife has to tell people at work what is going on, they are confounded at how calm and collected she is. She will just matter of fact say I am in the hospital AGAIN, and she will let them know what is happening. Last time, while I was in the hospital overnight, she actually went in to work and told me "let know what they want to do, or let you out!" She is not being disrespectful, just dealing with an "emergency" like she would, or would have, at work. (She has been a flight test engineer, that actually flew on several military aircraft! Strong lady!)
As to whether someone else should have angios, that is a difficult call. I would THINK that as long as any KNOWN problems are followed closely, any new issues should be caught.
And if they are experiencing any symptoms also. If therer isn't anything OBVIOUS happening, why put a young person through that, and like me, the more of them you have, the more likely there will be problems. Oh, and did I mention that the contrast media (dye) they use can be VERY hard on kidneys, etc. Don't want to damage anything else! When I had one of my caths done, the doc even commented that "good, we haven't done anything to your valves. Hopefully we won't this time "
Did you daughter have any problems OTHER than the aneurysms? If not, that may also explain their reluctance. If one of the aneurysms were to stenose (block up) she WOULD know it. It may take a while to recognize what is happening though since she is so young. I remember during one of my caths that when they expanded the balloon to place one of the stents, I immediately started having the chest pains and other symptoms. I even told them "yep, I think you got" in my drugged up stupor! Fortunatly, the procedure only takes a couple of seconds. But at least for me, it told me what a heart attack "feels" like to me without incuring any damage from a long term lack of blood flow.
Enough for now!
Bob

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Re: 46 year old survivor

Post by Momcat » Fri Aug 13, 2010 11:32 am

Thanks Bob,
Every little bit of information that you give helps me understand more about what to look for.
The stress echo is a treadmill test or they can also use drugs to induce the rapid heartbeat. I think they are looking for signs of stress or ischemia with the heart under duress. I know that some people have had stenosis without aneurysms, but our main worry is the ends of the aneurysms where the sheer factor is the greatest and where she might get a blockage/stenosis. I think that angios provide a clearer picture of it all, but hadn't heard all those warnings about the dye! She did have a nuclear stress test once and that stuff was radioactive.....probably shouldn't have done that one, but at the time I was in a panic about her and would do anything they suggested.
I can understand your wifes position, after a while you know the risks and you know what could or could not happen. When you live with that sort of stress then you just move onto other levels that regular folks never deal with. She does sound like a strong woman!! YAY! That probably actually helps you--a worry wart could send you over the edge at times I suppose! She doesn't create a lot of additional stress when you are being tested, etc.
It is a blessing that your life was spared and that you have such great doctors. Also thanks for saying that the Drs get caught sometimes between a rock and a hard place, trying to figure out what to do next with the post-KD problems. You are right, they are only human and they do the best they can---they are mot here to perform miracles! Thankfully we live in a day and age that has so much promise for extending life....just 50 or more years ago and we'd have several different outcomes to your life, my daughters and many others!
Please stay in touch!
Thanks,
Sandy

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Fri Aug 13, 2010 1:30 pm

Momcat,
Thanks for the info on the stress echo. I have had quite a few stress tests, but I don't recall ever having an echo done shortly after the stessor.
I wouldn't be to concerned about the nuclear test. Especially only having had one. Unfortunately in our society anything labeled "nuclear" is looked at badly. Yes, the material (usually a thallium isotope, I think) is a relatively "hot" radioactive source. However, the half life (the amount of time for there to only be half of the original material left) is very short. That is why the tests are scheduled so "tightly." It only takes about 5 or so half life periods to essentially eliminate any usable radioactive material. Basically it is .5 x .5 x .5 x .5 x .5 times however much there was to get what is left. If you do the math, it comes out to roughly only 3 percent remaining after the first 5 half lives of the material. It of course continues to decay each half life after that until it is indistinguishable from background radiation. And the body also eliminates the material through its normal processes. When they receive the material, the time when it was made and shipped MUST be known. Otherwise, they would not be able to calibrate the detectors that are used. Oh, and yes, it can be "made." There are many materials that are actually synthesized in various ways. Usually in a reactor (yes, as in nuclear reactor). You can put in a material, it gets "irradiated" by the neutron flux in the reactor. At that point the neutrons can be either "captured" to make a heavier element, or cause a fission reaction which generates TWO lighter weight elements. This can be done to quite a few different elements for different purposes. So, just think, the modern materials and advanced medical testing done today most likely would not exist without SOME sort of nuclear generation plant or research reactor! I know it sounds scary and spooky, but the science behind it pretty well understood. (I had a couple of nuclear engineering classes in college, by the way.)
Bob

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Re: 46 year old survivor

Post by MikesMom » Mon Aug 16, 2010 4:34 pm

Bob,
did anything ever show on your nuclear stress test?? The nuclear stress test is how my 12yr old at the time, they got a slight difference between the rest and after exercise pictures. then they did a cath and discovered a 100% blockage and a 50% blockage, month later bypassed the 100% blockage that was 3 years ago. They are watching the 50% by yearly nuclear stress tests, last one done last week prelim report looked to appear no changes, we will find out in October if he will have another cath as now 2yrs last one.

Sandy,
I agree that nuclear test is not to worry about the amount of radiation is so small but worth the scan pictures they take. The can compare the blood flow from rest and after exercise better than just the echo. The scanner now they are in and out within 20 minutes unlike years ago when they took over an hour. The pictures are then disected and chopped up some how to compare the two blood flow pictures in colours something like the echo colours but much more detailed.

Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Tue Aug 17, 2010 4:23 pm

Pauline,
So far as I know, nothing EVER showed up on the Nucl Stress tests. If it did, I was not told about it. I usually have heard "everthing looks okay" after them.
It can be really frustrating when you are felling badly, and none of the test show anything. Until they do a cath. Then they say "oh, there is the problem."
The stress tests may be "easier" and "cheaper" than the cath, but the cath is still the "gold standard" for them.
There are times when all of this would "just go away," but I know it won't. My doctor has even said that I am as stable NOW as I will EVER be. Not exactly what anyone
wants to hear! Especially with a young family! (Two boys, both under 10) I want to see them grow up!
Bob

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