46 year old survivor

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

Post by rascotttx » Mon Jan 26, 2009 10:50 pm

Hello all,
I am going to try to post some pictures I captured from my original heart cath video.
The first two are the"string of pearls, the others are the aneurysms
rascotttx
kd_cath_022.jpg
kd_cath_022.jpg
kd_cath_046.jpg
kd_cath_055.jpg

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MikesMom
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Re: 46 year old survivor

Post by MikesMom » Tue Jan 27, 2009 9:35 pm

I have not heard that term "string of pearls" before. What exactly does that mean? My son, on the left artery which they by-passed were four anseursyms back to back with very minumal normal artery between each anseursym. The first one was 10mm,then next one 8mm, the last two I do not remember the measurements exactly but the first two were considered giant, so that is what I fixated on. I never got a picture from his first couple of caths but the doctor who performed the cath had drew a picture of the four, then his cath in 2001 when they discovered the begining of the stenosis I viewed the film with the Dr. who performed that cath, when he had the cath in 2007 discovering the blockages, you could no longer see numbers 2,3 & 4. Is this what is meant by "string of pearls", because thinking what a string of pearls looks like that is how the original picture the dr. drew for me was like but the first ball was the biggest getting smaller to the last.

Where you original blockages calcified? Did the re-stenosis happen in the by-pass graft? If so, how long after the by-pass? Are you on a beta-blocker now? I stop with those questions! I am sure I will have more.
Thanks
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 Jan 27, 2009 9:49 pm

MikesMom,
Yes that is basically what the "string of pearls" is. The damage to the arteries looks like a "string of pearls" or in some cases more like a "string of sausages." I know the terms are NOT technical, but they do describe what it looks like. The Dr.s did not say anything about calcification so I don't know. Yes, many of my problems of late have been in the bypasses. That is one of the things that is SO frustrating. For a while after the bypass I felt better than I had in YEARS. Then things got bad. I had a clot somewhere in one of the smaller native arteries, as well as scarring in the bypasses. They have used multiple stents (16). I have BOTH drug eluting and bare metal stents. I have personally had problems with both types. I have had restenoses occure in as little time as a few days. I have felt great only to have major setbacks. Thank goodness I had purchased long term disability insurance from work. If I had not done that I would have been sunk. As it is now, I am also on SS disability. I was shocked when that got approved. My LTD supplier from work forces one to apply for it as soon as you are put on LTD. I have been out since June of 2007. After a year, I was administratively terminated from my job. So in order to go back to work I have to reapply. My insurance case worker has even told me that even if I am released by the dr. I may not be able to get work. I may be considered to much of a risk for anyone to hire. Rather scary if you ask me. My family has been absolutely wonderful through all of this. Without them, and a faith in God, I can not imagine how I could have gotten through (and am getting through...) all of this.
Please, ask any questions. Not going to bother me at all.
rascotttx

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MikesMom
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Re: 46 year old survivor

Post by MikesMom » Tue Jan 27, 2009 10:13 pm

I can only image how frustrating this has been for you. Restenosis in a couple of days, it is amazing that you have been able to handle the physical stress of by-pass, then repeated cath after cath, stent after stent - you must be truly one strong person and one really strong heart - that makes you think that your heart muscle is definatly really strong. After all Michael's tests and surgery that is one think that keeps me going is knowing that he has such a strong heart, beside from the damage KD did. When you think of all that damage it is truly hard to believe the heart itself is so strong. I remember when he was 5 or 6 and I stop fixating on the size of the anseurysms, I remember thinking how his heart really did not know any different as he was 18 months whn this happened that that must be why his heart function was still great. Even now after the by-pass his function is still great - it is truly amazing when you take the emotions out of it.

He is off to the Children' hosptial tomorrow for another physio appointment since the hematoma in Nov, he is walking now off the crutches just before Christmas but still trying to get full ankle range back. the are not expecting the body to completely reabsorb the hematoma until atleast March, so hopefully the smaller it gets the range he will get back. The last year and a half has been difficult for him, and with just turning 14 in October he is feeling a little bitter lately.

I am gald to hear that you do have insurance and receiving disability, we live in Canada so we are lucky with the medical. We only need insurance for his meds all medical visits and procedures are covered for all, a few times my hubby has wanted to move to the States with his job but the worry of medical insurance for Michael has always stopped us. We did apply for live insurance for him when our second child was born and Michael was 7, but the denied him even for a lousy 15K Gerber Baby life insurance. We travel to the States often as my parents are Snowbirds in Florida for the winters, but we have found an insurance that will cover his pre-existing condition as long as he has Dr. approval and not out of the country for more than 30 days. God help him when he is older if our medical system changes.
Please keep us updated.
Pauline
"Creating Awareness One Beat At A Time"
http://www.kdcanada.ca

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Re: 46 year old survivor

Post by Momcat » Tue Jan 27, 2009 10:21 pm

As long as we are looking at aneurysms, I will post Paige's here. The long one that is saccular is in her RCA, it is 11 mm wide and 5 cm long. The other one is in her LDCA and it is 14mm wide and 4 cm long (it was kind of two aneurysms that became one).
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giant1.tif
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Re: 46 year old survivor

Post by Momcat » Tue Jan 27, 2009 10:31 pm

I can't get these on the same post...will try the saccular one here:
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sacc3.tif
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rascotttx
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Re: 46 year old survivor

Post by rascotttx » Tue Jan 27, 2009 10:42 pm

Other than seeing the video/picture, I am not even sure how big my aneurysms acutally were. I just know the cardioligist got spooked when he saw everthing on the first cath.
Thank you for saying I am a strong person. There are times with all of this that I most definately do NOT feel that way. In fact, most of the time I feel just the opposite. To think that I have had these problems from a young age and had no idea really bothers me. When I thing of things I have done, I really wonder how I have survived. When I was in college I was in ROTC, went to field training, etc. While at field training we were taken to Fr. Bragg to go through the recondo obstacle course. If anything SHOULD have done me in, it should have! I agree, our hearts must be stronger than anyone can imagine (not just us KD survivors, but everyone) To think of the work they do, all the time is amazing.

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Re: 46 year old survivor

Post by Momcat » Tue Jan 27, 2009 10:44 pm

Sorry, I couldn't get those on the same post and sized right. I worry that she will have a stenosis and end up with a bypass.
I am wondering why they chose to do veins instead of mammary arteries for you? Did they ever say? Why are they waiting to do another bypass? It seems like you have more than enough damage, but I wonder if it because the stents keep everything open until they patch it with another....it makes you wonder WHEN they would do another bypass, if at all??? Or if they even can if they aren't all stenosed at the same time.

You know what really bothers me is I wonder if we should be doing any other tests than angiograms.....it surely sounds like the stress echos don't show anything...

Pauline, I know exactly what you mean when you take the emotions out of thinking about all the damage, vs how healthy our kids seem. It is a fine line balancing act. I am so glad to have God to give the trust to, but still sometimes I just can't believe Paige has the damage she does and when I get to thinking about it.......well, there is a whole lot less to take for granted now.....and there are so MANY people that just do not comprehend or try to understand..... I REALLY worry about her taking her meds as a young adult. Hopefully she will become more responsible!! Michael's hematoma is taking a LONG time to resolve.....poor guy! Sometimes I wonder what all this testing will do to the kids---hopefully make them stronger individuals.

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Tue Jan 27, 2009 11:03 pm

When I had my cath I got 4 stents. All of the problems were in a single vesel. It happened to be the graft to the RCA. I have been told now by multiple surgeons that they would only re do the bypass if there were problems in multiple vessels. About the only exception would be if there was a problem in only the left main artery. Then they would do a single bypass. I understand the fear. I can not fathom what it must be like as a child to go through all of this. As an adult, you are awake/aware during a cath. It really is not that bad of an experience. The only real "pain" associated with it is when they give the local anesthetic for the femoral artery access and then when the put in an angioseal or some other arterial closure device. I was amazed during the first cath. They gave me the local, and within a few seconds the cardiolgist said "I am already in your heart!" Sure surprised me, as I felt nothing! He commented that there are no nerves in the arteries, so there is no sensation of pain or anything else. The biggest post cath discomfort is having to hold still for a few hours. One of the reasons you are awake/aware is that they ask you to hold your breath at times, or ask if you are having any other symptoms. I know one time during a cath I was able to tell the EXACTLY when they found one of my blockages. I now know the sensation of having a complete blockage instantaneously. Fortunately it was very temporary! Oh, even though you are awake/aware during the cath, they do give some IV meds to relax you. They also have some amnesiac properties, so you don't necessarily remember everything. Depends on the doctor what they give you I think. The last time they gave me versed. There was one time during the cath that I remember asking for more of it! I remember very vividly doing that and telling them I was wide awake! Quite an experience!

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Re: 46 year old survivor

Post by Momcat » Sat Feb 07, 2009 3:34 pm

When Paige was in the emergency room with her 4th trip to the hospital and in intense pain. They were trying to insert a cath for a urine check--that was the worst experience she ever had at any hospital. Her aneurysm was growing--(9mm at that point)....they gave her Verced 3 times and it didn't sedate her, they finally put her on a morphine drip and she passed out. She woke up in the airplane, flying to Portland Oregon to a childrens hospital. She ended up remembering everything, so the Verced - at least at that time, didn't seem to matter. Maybe because the whole thing was so traumatic.

I found this about finding aneurysms in young adults. It bothers me to think of all the undiagnosed cases of people walking around out there like you did.........

http://www.ncbi.nlm.nih.gov/pubmed/1919 ... d_RVDocSum

It baffles me that specialists can't think of a way to bypass all of your old problems and get a new system in place. If your heart isn't damaged. I can't imagine living with all your coronary arterial issues -- it seems like you are at the point of waiting for something else to happen and then they do a stop-gap fix that ends up needing a fix itself. How could you possibly have all the arteries blocked at the same time for them to proceed with a new bypass. I wonder if they just don't want to take any risks...... I suppose your doctors have consulted the vascular specialists regarding this....if not, I would be checking around to see who really is the bast cardio-vascular surgeon around and be talking with him online or making an appt to see him/her.

Do you take a lot of blood thinners, what do they want your INR levels to be?

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Sat Feb 07, 2009 7:44 pm

Momcat,
I am on Plavix and aspirin. Those are the only blood thinners. I had been on the aspirin for only a couple of weeks before my bypass.
I have all sorts of other meds. Including a new one called Ranexa. It is reserved only for patients that have not responded well to "classical" therapy for angina.
Basically, if you don't get better after bypass and stents and still have the angina then it can be used. Thank goodness for GOOD medical insurance as it is very expensive.
You are right about how I am living. It is basically wait untill something happens (again....) It is extremely frustrating. I never know what will happen or when. Of course that can be said about everyone! It is only different because we KNOW I have problems that are lurking. The cardiologists have wanted me to have a redo of the bypass for a long time.
The surgeons are the ones who are extremely reluctant. The last one i saw even said " if we this now, there will never be another one" That was not something I wanted to hear!
When they (finally) checked my LIMA and RIMA, the left was okay, but the right was unusable (to small...) Of course, the problems I have been having are on the right. Go figure... Just my luck, like finding out about the Kawasaki WAY to late...
Sorry to hear about your daughters problems. As she grows and becomes more aware of what is happening she should be more cooperative with the docs.
rscotttx

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Re: 46 year old survivor

Post by Momcat » Sun Feb 08, 2009 12:52 pm

Oh, that was only one time at the first of the KD and the most traumatic. That was 6 years ago. Since then she does well considering all the testing. She is very secure in hospitals and with doctors. I think she likes all the attention (an rootbeer floats!) at the hospitals. Sometimes she would beg to stay overnight.......ugh! Now she is 12 and rolls her eyes at everything.......doesn't seem to matter if it is KD related or not!! I know another angio is coming. I get frustrated with the testing, but it is the only way to keep an eye on the aneurysms. I need to let her know how you felt when you finally went in for initial testing. It sounds painful, or like she would definitely know there was something wrong.

Please tell me what LIMA and RIMA are. Mammary arteries? They also use the thoracic don't they?

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Re: 46 year old survivor

Post by Momcat » Tue Feb 10, 2009 8:11 am

I found this article that was interesting of KD returning in a very few adults. I was really looking for a correlation with asthma because so many people are talking about their kids behaviour after KD and allergies and asthma. This seemed like a rare case, but interesting......
http://www.ncbi.nlm.nih.gov/pubmed/1749 ... d_RVDocSum

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Re: 46 year old survivor

Post by Momcat » Tue Feb 10, 2009 8:27 am

Here are some interesting photos of occluded aneurysms in a 15 year old girl. This is the kind of thing that makes me worry so much...
http://www.jstage.jst.go.jp/article/int ... 6/559/_pdf

rascotttx
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Re: 46 year old survivor

Post by rascotttx » Tue Feb 10, 2009 12:40 pm

Momcat,
Yes, the LIMA and RIMA are the left and right internal mammary arteries. In my case, the right is unusabel to redo the bypass because it is to small. The left is okay, but my problems of late have been on the right side. I was told at the time of my bypass that the reason for using the saphenous vein graft instead of an arterial was that the surgeon wanted to leave the LIMA and RIMA in case they needed to be used at a later date. There are many other arteries that can be used as well. You would need to have a LONG talk with any surgeon who is caring for you daughter. DO NOT be afraid to talk with them and take their time. I know many people have a "fear" of doctors when they talk with them. My best advice is DON'T BE AFRAID OF THEM! They are people to! The only real difference between you and the doctor is that they have been in school longer to learn some things. I have had doctors who are good friends and neighbors, and once you get to know them, they can be really interesting people. I can understand your fear. I l live with it every day. It seems that no one knows what is really happening with KD. Because of this, everyone is reluctant to act. Sounds like your daughter is starting to act like a normal teenager with the rolling of the eyes, etc. Whatever happens, try your best to keep the lines of communication open with her. That will probably be one of the hardest things to do with her, and the MOST important. Especially when it comes to her health. I know when I was a teen I did not want to talk with my parents about things that were bothering me. If I only had, some of my issues now may have been helped. Thank you for the various links to KD information, I have found them informative and interesting.
rscotttx

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