46 year old survivor

Personal stories of individuals and families affected by Kawasaki disease
rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Tue Mar 24, 2009 11:34 am

Hello All,
I just had a follow up visit with my cardiologist yesterday.
Due to all of the problems I have had post cabg, and post stents, I am now classified as permanently, totally disabled. Total bummer for a 46 year old guy, that to just look at you would never guess had MAJOR medical problems! Thank God I had/have good insurance, and had disability insurance through my employer! When I had to go on long term disability my insurance company MADE me apply for Social Security Disability. Amazingly, SSD was approved. The insurance company had hired another firm to handle all of the paper work, and any issues that cropped up. SSD was initially denied (as normal..) but was approved on the second attempt. So, now I get to deal with the emotional/psychological issues of being a father with two young boys that can not really go out and "play" with his children the way I would like to. Fortunately, my wife (their Mom) can do things with them.
It is really frustrating to get tired and out of breath after only a couple of minutes of shooting baskets with them.

Momcat
KD Forum Leader
Posts: 1516
Joined: Mon Jan 02, 2006 2:50 pm

Re: 46 year old survivor

Post by Momcat » Tue Mar 24, 2009 9:49 pm

I am so glad that you had disability insurance and that it is paying off for you. It seems like Social Security shouldn't have been a problem and am happy you are over all the paperwork. You are blessed to have those sources for income.
How hard this is for you as a husband and dad. You are programmed to be a provider. You also are programmed to participate in challenging activities with your sons........urgh. KD aneurysms really knocked the foundation out from under you in the prime of life. What is it that you CAN do that satisfies both of those avenues?? I am sure your family is much more understanding than you realize. I'd say this might be a good excuse for a Wii ??!!! I suppose you are learning that you are loved for who you are, not what you do!
I worry about your heart condition and all they have done to try to patch things together..... Perhaps we are all waiting for cloning of arteries or some other new technology.
Hang in there, you really do inspire some of us!!!

User avatar
MikesMom
100+ Posts
Posts: 207
Joined: Sun Oct 28, 2007 4:18 pm
Location: Ontario Canada
Contact:

Re: 46 year old survivor

Post by MikesMom » Thu Mar 26, 2009 8:03 pm

Perhaps we are all waiting for cloning of arteries or some other new technology.
Wouldn't that be wonderful!!!!!!!!!!!!!!!!!
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

award
100+ Posts
Posts: 270
Joined: Sat Jul 12, 2008 4:18 pm

Re: 46 year old survivor

Post by award » Fri Mar 27, 2009 11:02 am

Did Dr. Burn's team contact you yet about being in their studies? She is VERY interested but since they have several studies going on I just wanted to make sure you were, in fact, contacted. I just spoke to her about you last week when I saw her and she wasn't sure where you were in the process and she has research assistants so I want to make sure you were not forgotten. If you weren't contacted yet, email again please--she really does want you in her study.

April

rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Sat Mar 28, 2009 11:05 pm

award,
I have emaild Dr. Burns twice, and have heard absolutely NOTHING back from anyone. I even had the email set to get a read response and got nothing from that.
I am interested, and VERY willing to participate. If you have direct communication with her, you may want to give her a nudge to contact me.
I am unfortunately now on total long term disability. It is extremely frustrating to me to not be able to do very much. I also get agitated very easily. My two boys (5 and 7) can get on my nerves just by being boys and making noise. Oh, when I was at my last cardiologist appointment, he told me that he had seen another KD patient. That made the 4th one he has seen in his 30+ year career so far. I think we have even all been post KD adults! I would venture to guess that as we baby boomers and post baby boomers start to age that we may be showing up more frequently. I am guessing at this, but I suspect that a LOT of us whose parents were told we had scarlet fever may have actually had KD. I have spoken to people who even progressed from what was at least thought to be scarlet fever to rheumatic fever. We all had the severe skin peeling afterwards. I can remember basically having my skin peel like a snake during molting. It would come of in sheets. My mother would have to change my bed every morning because there was so much skin. Funny thing, it never did hurt. As I recall from 40 years ago, it did itch though!
rascotttx

award
100+ Posts
Posts: 270
Joined: Sat Jul 12, 2008 4:18 pm

Re: 46 year old survivor

Post by award » Tue Mar 31, 2009 10:33 pm

She is out of town right now for a few weeks but I will copy this email and send it out so she knows. I had the same issue when I emailed her to be in the study--she sent it to one of her research assistants to handle it but they never contacted me so I was persistent! I will see if my sending it helps.
April

award
100+ Posts
Posts: 270
Joined: Sat Jul 12, 2008 4:18 pm

Re: 46 year old survivor

Post by award » Wed Apr 01, 2009 9:05 pm

She hasn't left town just yet and this is her reply below so if you email her now and say that I told you to email and refresh her memory, I think she'll contact you.
April



Thanks April.
I just can't keep up anymore. Of course, as you know, I'm intensely interested but I just can't get to all these emails that flood in. I need a personal email assistant that knows all about KD just to handle all the correspondence!!!
Can you send me his email so I don't have to dig through the pile?
All the best, Jane

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

Express mail address:
Basic Science Building
2nd floor, Rm 2023
La Jolla, CA 92093
Lab Telephone: 858-246-0157

rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Wed Apr 01, 2009 10:00 pm

April,
I just sent you a pm. I also resent my original email to Dr. Burns.
Hope this helps!
Bob

winter
25+ Posts
Posts: 40
Joined: Sun Nov 30, 2008 9:15 pm

Re: 46 year old survivor

Post by winter » Mon Aug 02, 2010 11:20 pm

Thank you for your story Bob, it really helps us as parents know what to look for in the future and what to be aware of....I'm so sorry for your suffering, and your families.

I find it interesting about the scarlet fever, my great aunt died as a result of rhuematic fever, and my uncle was bedridden for close to a year due to rhuematic fever. I'm wondering if it was KD instead.

My question is this....as a child did you experience immune system problems or chronic sinusitis? My daughter post KD has suffered ever since to the degree of her physician recommending we do school at home. They cannot seem to find anything in her immune system but apparently something is not quite right. I'm always worried as every KD parent is. There are so many questions we all have....it's nice to know we are not alone.

rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Tue Aug 03, 2010 5:13 pm

I hope I can help someone.
Yes, I did have a lot of sinus problems. Until an ENT doc told me to start using a saline nasal spray a few years ago. That has been a tremendous help.
I really can't imagine what it is like for the parents. It has to be horrible.
It may sound strange, but I am actually glad my parents have already passed away and are not seeing all of the problems I am having now.
I can "see" my mother feeling guilty over something she had NO control over.
In my childhood records, there are two instances (1968, and 1971) that I was diagnosed with scarlet fever. I had a severe rash and peeled all over.
I remember (yes, even from that long ago...) the pediatrician saying it was very rare to have it twice. He said it was even MORE rare to have the rash/peeling twice.
It turns out that he could NOT have known about KD at the time. The first english language medical paper was not published until 1974, to late for me.
Yes, I do spend a LOT of time poking around trying to get all the information I can.
Having worked as an engineer for an aircraft modification company has made me very stubborn like that. Sometimes you have to really DIG for information.
Something is usually availble, but not easy to locate.
That is what originally led me to this forum. Much digging for information.
You learn to not take "no" as an answer. Usually even an "I don't know" gives you more information than just "no" because it can lead to follow-up questions.
I even take that approach with the Dr.'s, and I have seen a LOT of them over the last three years.
Of course, it helped when all of this started that my next door neighbor was a GP!
Sometimes it is fun to know an answer to a question even before you ask a specialist!
You MUST be a very (and yes, even to the point of being labled as a "difficult" parent if needed) vocal and adamant parent for your child.
The children in these situations have NO idea what to do, or how to get help. They (and I remember doing this myself) will just tell Mom and Dad that the don't feel well.
They may not even know HOw to describe what they are feeling.
One of the most difficult questions for me ( when I was old enough to start filling out my own medical forms) was "have you ever had any chest pains", it is a standard question on almost all new patient forms. I had had other problems that did cause "pain" in the chest, but at the time was NOT cardiac (or so I thought anyway).
I had a condition called pectus excavatum (basically a sunken chest wall). I had surgery when I was 19 to correct that (after I had finished growing, etc.)
It is really strange, but I remember the surgeon (He was a cardiovasucular doc..) telling me at the time that my heart "looked" very good.
Tells you how much to trust someones vision. Of course, he could not see the problems..
If you have any questions, please feel free to ask. I will do my best to answer them.
Bob

winter
25+ Posts
Posts: 40
Joined: Sun Nov 30, 2008 9:15 pm

Re: 46 year old survivor

Post by winter » Wed Aug 04, 2010 11:11 am

Do you know the difference between scarlet/rhuematic fever vs. KD? They seem to similar....

People already think I am crazy because I don't give up. Its almost an obsession, but it should be its our children, that's what a mothers job is. I'm glad she is out of school because I couldn't not get anyone at the school to recognize I needed help to keep her healthy, they all just thought I was crazy. I try to warn those doing blood work she is traumatized from her KD hosptial experience where they tried to get an IV in for 45 minutes to 1 hr. (I should have fired that nurse and gotten a new one!) but we were to worried about her life at that moment, (I still have guilt) and they look at me like I'm crazy until they try to get her blood and when we leave I just give them the look like, I warned you... and then they get it.

Atleast her ped is wonderful and has always been wonderful, very supportive and respectful of all my worries, he just says "that is what a good mother should worry about". But I'm sure I drive him crazy as well.

We do the sinus rinses as well. I try really hard not to use anibiotics because they don't seem to help the process (speed it up), she has had to many already, I want them to work for something really important in the future like mirsa or staph etc. Her ped has told us that research shows that the sinus rinse works just as well if not better in relieving sinus infections. I really need to have her do it every day as maintence, I get distracted with my other children and get off the schedule which isn't good. The newest immunoligist we went to see wanted to put her on a continual low dose antibiotic and IVIG monthly to boost her immune system. My husband and I left saying "are you crazy" and this is an immunolistist. I think just keeping her at home doing an oline public school would be less taxing on her system. We took her sister out at the same time so she would have someone else at home with her to be with (they are 20 months apart), so atleast they have each other. Which they have both have given up a lot for her health, but I hope when they are older they will understand why we did what we did. I think I'm more traumatized than them. :)

She is getting old enough to tell us what she is thinking and how it is effecting her. She has had to wear gloves when we have gone in public before to keep the germs at bay and she is now old enough that she tells us no I would rather stay home, which I think is interesting. If we go to Children's we make her wear gloves & a mask and we do the same, if we go the the dr's office we never sit down, and wear masks. Just were we know there will be a high germ count, mainly in the flu season. Our dr has told us she is in the high risk catergory for complications if she were to get H1N1. This is another reason why school is not an option, when we took them out it was going around their school.

Recently reading the posting of the mom that just lost her 8 year old to H1N1 post KD, I just cried.... it hit home to me, and made me not regret our desicions, even though others still think we are crazy, and yes I do to when I'm exhausted from teaching, and I try not to think ...this is not how it is suppose to be... or my friends are upset with their children and just wish the break was over and their kids were back in school because they cannot stand them anymore. I just laugh to myself and think welcome to my everyday!

Working, teaching, keeping up the house, taking care of my children and keeping up on research keeps me to busy to think much, except in the summer when school is out. Having the kids home with me has brought us closer together as a family and I'm very glad for that opportunity. I'm always interested in reading about adults post KD and what they have and are overcoming so that I am aware of what the future might bring, that is why I'm so very appreciative. We are all in this together! I just wish the Dr's had the time and energy to read this forum so that they got a broader picture that even though some of these kids did not have heart complications immediately following KD they are still having other complications in health, or in the future having heart complications. This is why I'm eager to see the results of Dr. Burns research as I'm sure we all are. Hoping it will open there eyes and they will change the way they are dealing with these children.

My daughter has recently been so sluggish, it worries me. I don't know if she is just bored or if something more is happening. I can't get her active, she just wants to read and sit around. It concerns me. She told me she was just so tired. I made an appt but have canceled it because on vacation she swam for hours but now that we are home she is back to reading and not wanting to ride her bike, or being outside. I hope its just being bored in the summer. I ask her if she hurts anywhere, or if she is still really tired and now she says no. So just watching and waiting to see....

KCLP
100+ Posts
Posts: 189
Joined: Sun Feb 15, 2009 3:31 pm

Re: 46 year old survivor

Post by KCLP » Wed Aug 04, 2010 3:55 pm

Rascotttx,

Providing your history with KD has helped me - for sure. There are few adults with your experience/fight with KD. I appreciate your posts. We know - as most research reminds us - most kids post KD have few if any long term side effects.

Can't believe in 2007 your EKG, blood work, and stress test were normal. Heads up! Thank goodness your GP (neighbor?) refered you to the cardiologist. Tropol -reminds us not to allow the Dr's to treat the symptoms but, to demand a cause! With Pectus Excavatum, PE was required for you - only in the 70's?

You mentioned your family. Have you noticed Immune system problems with your two children? Did your parents indicate an early history of ill - health with them or any relatives?

I am just "slightly" older than you. Guessing you attended High School in the late 70's. As an Engineer, it is doubtful you had academic difficulties in school but, you indicated chest pain during PE. Did you also have low endurance? There are three concerns I have for the KD teens other than physcical health. 1. Academic. 2. Social/behavioral. 3. Large & fine motor/endurance. Forgiving lumping of issues, how would you evaluate these three catagories for yourself as a teen? Have you had high cholersterol your entire life? What about high BP?

I am glad your demand for knowledge and your determination led you to this forum. When we walk into a Dr's office with our list of questions (already assuming the answers) and patiently await the typical generic response (angina!? who are you kidding!), it takes courage and self control to keep pushing and gently guide the professional into the direction we would like them to go. - An artform really. (smiles).
Describing your symptoms or your childs to a Physcian - they listen and then subdivide. 1, 2, and 3 = this DX. 2, 4, and 6 = that DX. The best Dr's have the ability to think "outside the box". - Yes, they do exist! Your discussion about how to discuss a childs issues to their Dr's is a useful tool.

Thanks for your insight. Keep educating us. Your experiences and knowledge help us to stay focused on our fight to continue finding a cause and cure for Kawasaki Disease/Syndrome.

KCLP
Last edited by KCLP on Wed Mar 26, 2014 12:52 pm, edited 1 time in total.

rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Wed Aug 04, 2010 10:44 pm

KCLP,
Let me try to answer some of your questions.
I am sure I am one of the extremly misfortunate people that have all of the problems!
Yes, with the Pectus problem I was still required to go to PE all the way through school. I graduated from HS in 1981.
Oh how I remember being told "Just keep running, your just out of shape!" NO FUN. I was never able to keep up, but kept trying anyway! (now we know WHY!)
When I was in college, I actually passed a USAF pilot physical, and went to field training. Scary thing to think about now!
I wound up leaving the ROTC program due a severly sprained ankle, that got put in a cast for a while.
My normal GP (not the neighbor) was the one who sent me to the cardiologist. I had gone in having some chest pain. He of course did an EKG immediately.
Did not show anything abnormal, so I got a referral to the cardiolgist, and stress test schedule a couple of days later before I went to see the cardiologist so he would
have something to look at.
My parents were pretty typical in that they were of the WWII generation. ( I was a surprise..., and their youngest...)
Both of them also smoked like chimneys, and wound up with the usual late in life cardiac issues.
My Dad also had degenerative arthritis in his spine. That eventually caused him to be put on disability. When that happened he went home and sat and nothing for a while.
Until he had his first MI. Then he started walking, etc.
I am very fortunate that my children have been healthy. Only the normal colds,flu, etc. and nothing like I had.
Your list of three concerns is understandable.
1) Academic: I was never a great student, but did well enough. In Jr. high I got recommend for honors science, but being a "dumb kid" stayed in a normal class.
Can you guess what happend? I got BORED. Thus did not work anywhere near as hard I should have. So far as I know I had no academic/intelligence effects from the KD.
I was able to attend a Big Ten college, and went through their Electrical Engineering Technology program. I eventually wound up working for an aircraft modification company in
Texas. My wife is also an engineer at the same company. We like to refer to it as an "airplane chop shop."
2)Social/behavioral: I have always been a shy/introverted type person. Of course, the pectus issue played a large part in that! Remember the days of Skins/Shirts basketball, or other sports? I always HATED that. I REALLY did not like having to take my shirt off. Unfortunately, kids in general are mean. They don't realize it. They are just stating obvious
facts about what the see, and don't think about the other person and their feelings.
3) Large motor endurance, see #1 above. As to fine motor skills, no problems there. My big hobby (since around age 10 or so) has been model aircraft. The radio control type that I build and fly. It may "seem" like "playing with toys" but isn't. Think of the UAV type aircraft in the news. Just smaller.

Yes, I have always had a cholesterol problem. I actually started out on Mevacor back in the '80's. It did not like me. Of course have changed meds throught the years. My
BP for a while was up, but that was due to a weight issue (can you say lazy young adult?) Actually now, since all of the cardiac surgery, caths, stents, etc. my BP has been running
low. I actually sometimes have problems when standing up, and getting light headed. It has actually gotten REALLY low a few times (like about 75/50 or so, maybe even less)

I am also really lucky in another way. One of my good friend from our church happens to be the Cath lab manager in the hospital I usually go to!
It can be kind of neat hearing about the doctors conversations. Especially when you find out what they are saying about your case!
One of the things that I have heard DIRECTLY from the cardiolgist would be really funny, if weren't so true. He told me once that "we can't go to page 34 in the medical textbooks
to see what to do in your case, there is nothing there. So we are "throwing the book out the window!"" They ARE human, and DO have a sense of humor as well. It is just a shame
it takes something like this to find it out! One of my favorite "sayings" about the doctors is that "they are no smarten that anybody else, they have just been in school longer than most of us!"

All of us that are dealing, or have dealt, with KD are in an unusual situation where a LOT of docs just don't know how to handle us.
I do know that my cardiologist has now (since me...) seen two or three other KD adults. Also, when my wife or I take our kids in to the pediatrician she is always asking US questions
about what is happening with me! She told me about a month ago that she had recently diagnosed a child with KD, and refered them to a pedi cardiologist in hospital not to far away.

Here is something that I have been battling with. Since I have had all of the procedures done, I can NOT tolerate extreme heat (like 100F+, for days on end in central TX), or very cold temps. The heat saps my energy to almost nothing. When I breath cold air (below about 40F), it litterally hurts. It seems that the cold goes right to my heart.

I am glad that someone is profiting from my bad experiences. I don't THINK this is the norm, and I have just had bad luck. One doc told me "you drew the black bean!"

Whew, sorry this is so long. Enough for now...

rascotttx
25+ Posts
Posts: 37
Joined: Tue Jan 13, 2009 6:33 pm

Re: 46 year old survivor

Post by rascotttx » Wed Aug 04, 2010 10:50 pm

Before I forget...
Winter asked about the difference between scarlet/rheumatic fever and KD.
I can not speak about the rheumatic. Don't know anything on that one.
As to the scarlet fever/KD difference, what I have now been told (by the KD researchers, they ought to know) that with scarlet fever you don't peel, and KD does.
I know when I was sick my skin came off in sheets. It looked like a was a molting snake.

KCLP
100+ Posts
Posts: 189
Joined: Sun Feb 15, 2009 3:31 pm

Re: 46 year old survivor

Post by KCLP » Thu Aug 05, 2010 10:30 pm

rascotttx,

Thanks for your quick reply to my many questions.

You had mentioned radio controled model aircraft being your hobby. Sounds like the perfect bonding activity between you and your boys. I have three boys, we have a local park (actually acres of land that surround a juvenile detention facility) in our area. There is a a club (can't remember the name) that has members come from all over the area on the weekend to fly their craft. It is amazing to watch and my boys love it. My husband jokes with them that there are cameras in the aircraft to watch that the kids in the youth center do not escape - when my kids were young they used to believe this, now they just roll their eyes at their dad.

70"s PE - The girls wore blue jumpers so we never had the humility of taking our shirts off and were not allowed to mix with the boy's class but, girls could be mean too!I work in a self-contained classroom K - 3 for kids with ASD. In our public school we have "respect contracts" "gotcha tickets" for good choices and catalogs of suggestions to teach the kids kindness and tolerance yet, there are always the few who are cruel or, perhaps just brutaly honest at a young age.

My husband is in the "industry" based out of Chicago. When he graduated and was pursuing a career in aviation the airlines would not hire those with scoliosis. This was a blow to those grads after years of pursuing their degrees. I can't believe you passed the USAF physical! I assume you do not have scoliosis. But, did you have high BP (was the systolic or diastolic high) and cholesterol at the time? If so, why did you have the cholesterol checked so young? There are Dr's that believe children that had KD are at higher risk for curvature of the spine.

Your EKG and stress test showed no abnormalities when you were in your 40"s You never mention an ECHO result. Did it show anything? The heart cath was the only test that showed any/extent of damage? What are our young adults to do when they present with high BP, chest pains, with a history of KD -having a normal EKG, stress and ECHO? Do we demand invasive tests to reassure us or wait and see. There is no good answer currently.

Do you believe you have had the aneurisims and damage since childhood?

I ask about the academics because I have a hard time believing that the high fevers of KD are not related to cognitive difficulties in some. But, the studies say no and you have none. Febrile seizures are not associated with KD. Did your parents ever mention you having them?

On another post we have been discussing Thyroid disease and KD. Have you ever had your TSH level checked?

I have heard some kids experience temp sensitivities post KD but, yours is recent. Has your DR. given a reason? TX heat this summer is awful! 40F in Chicago is a beautiful Fall day.. I can't imagine your chest hurting at that temp. Have you thought about respitory reasons?

Again, thanks for answering my seemingly never ending list of questions. I do appreciate it.

Best to you and yours,

KCLP
Last edited by KCLP on Wed Mar 26, 2014 12:54 pm, edited 1 time in total.

Post Reply