underdeveloped arteries

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luanne320
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 6/28/2006 2:22 PM (GMT -7)   
hi, i'm new here and wanted to introduce myself. my son, nick, was born with a congenital heart defect. he's now 12 and new problems keep cropping up. he was born with aortic stenosis (a unicuspid valve), mitral stenosis (never an issue) and coarctation of the aorta. he had open heart at birth, a cath with balloon at 5 months, another cath at 11 months, open heart at 13 months, and the ross konna procedure (his third open heart) at 3 1/2. they removed his aortic valve and replaced it with his pulmonary and he had a cadaver for his pulmonary.
 
things were going well til recently. he had a cath a couple years ago and they discovered a narrowing in his subclavian artery, but we were told that wasn't an issue. this year he had a cath done in february where they discovered his aorta narrows significantly as it descends into his abdomen. another cath was done in march when it was discovered the subclavian artery was causing subclavian steal syndrome, which was causing seizures. that was stented. they also discovered a kink in his right coronary artery that was caused by the way it was placed after his third open heart. he had a stress test which showed a lack of blood flow to his heart muscle and on june 12th they did another cath and stented his right coronary artery.
 
several days later we noticed his lips had a bluish tint after playing with his brother and he was pale and sweaty. we ended up back in the hospital, another stress test was done and they same lack of blood flow was seen. so they did another cath and found the stent still open and working fine. he explored further and discovered nick's left coronary artery has very underdeveloped branches which are too small to get enough blood to the heart muscle.
 
he's added isordil to his plavix, aspirin, vasotec and digoxin. he isn't allowed to do any strenuous activities or heavy lifting and they'll redo the stress test every 3 to 6 months to see if there's any improvement. they are hoping with the med opening up the arteries, they will start to grow and catch up to the rest of the heart.
 
so my question is (sorry this was so long), have any of you had anything similar? do you have any experience with underdeveloped arteries getting any better and then have the ability to resume activities? nick is at a high risk for a heart attack and even sudden death, so he has to be careful and can't be alone at any time. they think the nerves to his chest were cut during surgery and he won't get chest pain, so that's why he has to be closely watched.
 
any help would be greatly appreciated. this is hard for a 12 year old to deal with.
 
 

Hopes
Regular Member


Date Joined Feb 2006
Total Posts : 297
   Posted 6/28/2006 4:53 PM (GMT -7)   
I am so sorry about all of your son's troubles. It must be a very frightening thing to have to go through for you and Nick. I do not have any experience or knowledge in this area.

However I wanted to tell you about about another web site online that has communities and one is for congenital and pediatric heart disease. They may have more information for you and I am sure they would be supportive since many are going through similar things with their children.

The web address is http://heart.healthcentersonline.com/community/

In case I typed something wrong, you can google it under HealthCenterOnline.

God Bless, HOPE

els
Veteran Member


Date Joined Oct 2005
Total Posts : 4031
   Posted 6/29/2006 4:59 AM (GMT -7)   
Hi luanne,  I just wanted to welcome you to healing well forum.  We are happy to have you.  I am sorry about your son's heart problems.  I see hope have given you a great web site to visit and do some research.  I am sure some other members will also post to you too.  Please feel free to continue to post here as this is a wonderful place for support and information.  Take care and my thoughts are with you and your son


 


Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 6/29/2006 9:39 AM (GMT -7)   
I am so sorry to hear about Nick's ongoing struggle. I hate to see anyone that young, receive the dose of radiation that goes with the contrast dyes used during a cath. I have had 8 cardiac caths myself, but I am 53. I have a congenitally "insignificant right coronary artery" which is too small to stent. It supplies very little blood to my heart.
 
Your son is on many potent medicines, so take this with a grain of salt. I researched the vasodilators, a few years ago. I was started on timed released nitroglycerine, Imdur, due to angina. I read somewhere, in theory this could promote "collaterial" artery development. As you know, collateral arteries can form natural bypasses, but usually not enough to support an active lifestyle. Imdur will also lower your BP, so your son may not can take it. It does have some troubling side affects especially for a couple of months. I have stopped this med, because I take way too many others.
 
It's a shame that the small left coronary arteries were not discovered earlier, unless the docs thought he was at an age where they could have been small. I am sure they probably use as little contrast dye as possible with him. They probably are also in a hurry to finish the procedure due to his age. I believe that some intervential cardiologist miss some details of our coronary arteries during a cath. It is documented that this has happened before, although the procedure is the gold standard.
 
It would help his Lca(s) to grow if he could exercise, but that is out for now. I have 3 stents in my Lad and 1 in my obtuse marginal. They wanted to use my left mammary artery to bypass the 95% blockages. I chose stents and rotoblational arthectomy 4 months ago.
 
A doc that used to post here told me that thoractic surgeons always wanted a good "target" to graft into, i.e. Nick may not have a good target.
 
He has had soooo much surgery that it is becoming hard to do again. The old fasion 12" scar and having your ribs sawed open is tough. That is why I am running from it. I have researched websites like and really only one that seems to speacialize in this area and it is a minimally invasive type "keyhole surgery" It has a proper descriptive name, but I forget what this type of surgery is called. THE MOST IMPORTANT thing about this surgery is it is hard to repair anything BUT the Left coronary arteries. This is beating heart surgery. A small incision is made in the cartilage between the rib cage. A mammary artery is disconnected to where it went, and grafted into the best artery available (his dominant left). The mammary artery is known as a "native artery" and does much better than veins removed from other parts of the body. Recovery time is much quicker.
 
I don't know who has done your son's surgery, but I would go directly to the Cleveland Clinic. They have a very user friendly website. They also specialize in receiving medical reports from your doctors and rendering a second opinion. The cost is not that much and your insurance may cover it. It's around $500-$600. I really suggest you get help from all of his previous docs in gathering his medical records and contacting the Cleveland Clinic. You can also make appointments and have any necessary procedures done. I think they are also in Florida.
 
I don't believe that having cut some of the muscles in his chest will mask all of any possible angina associated with his condition. He has had so many procedures, he probably doesn't remember how a normal chest feels though.
 
If his BP is not low, ask about fast acting nitro which can prevent a heart attack. I have lived with it for years, at times. If your BP is low, the nitro can cause it to fall so low that cardiogenic shock can occur.
 
G-d bless Nick,
 
Rj

luanne320
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 7/4/2006 6:50 AM (GMT -7)   
thank you all for your responses. hope, i usually avoid posting on sites for congenital heart defects because most parents can be very overwhelmed with what they are going through and to hear stories of kids going through more and more can be hard. i remember posting on a site a while back and a parent saying, 'oh great, just what i needed, more things to worry about'. so i felt bad and avoid them now.

thanks for the welcome elisha. it's good to find a board where i can talk about nick's issues and get some advice.

thank you for your long reply rj. we are going through a very good heart center right now. it's arnold palmer in orlando and they are affiliated with miami children's. in fact, they conference together before deciding how to proceed and before nick's last two caths, they also included several adult cardiologists since pediatric interventionists don't deal with coronary arteries very much. so i feel pretty comfortable with his treatment after leaving a card who pretty much ignored some pretty serious signs. nick's blood pressure in his right arm has been high recently but now that he's on the isordil, it's been staying in a better range. the left arm is always very low. amazingly he didn't have any side effects from the isordil but maybe that's because his bp is usually high and this just brought it down to a safer level. i'm not sure.

we go back to the cardiologist in 3 weeks and nick is anxious to ask exactly how active he can be. it's hard for him to sit still and miss out on so many activities. hopefully these arteries will grow and he'll be able to be active again.

thank you again for your replies.

MrTudo
Regular Member


Date Joined Jul 2006
Total Posts : 31
   Posted 7/4/2006 8:19 AM (GMT -7)   
Hi Luanne, so sorry about Nicks troubles. I too have been told to get a second opinion at Cleveland Clinic. I was told they are the best. Here in Fla they are located in Ft Lauderdale ( Westin )which is west of Ft Laud.

Rgrds
Tom

luanne320
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 7/4/2006 9:45 AM (GMT -7)   
thanks tom. actually miami/orlando was our second opinion and they've been doing a great job treating him. i will definitely check into the cleveland clinic if i feel it's necessary.

Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/4/2006 11:35 AM (GMT -7)   

Gee! What a website reply to your life struggle for your son's life. I will say that an online support opportunity for myself has really helped. I have learned some of how to help the doctors, from other people's experiences dealing with them.

Children make me really emotional sometimes, when I consider their sickness. At times in the past 3 years, I have been so sick from blocked arteries that I would always have one thought to think when pity sit in; Consider all the little children with heart disease. You have lived over a half century and bout done it all.

The last time I checked a children's heart forum was when one was recommended to you. The first 2-3 post seem to deal with the passing of children. Parent's like yourself and yourself only should support freely. Who else has experienced the things you currently are?

I can surely understand the differential pressure readings in Nick's arms, with the subclavian inbalanced flow, or blocked flow.

He needs the very best food available. He should practice deep breathing, or clensing breathe. He should maintain a correct posture to prevent his ribcage from chrushing him from within. The mental part must be just as tough for him as the physical. ATTITUDE-now how does one maintain a good attitude when things are so dire? Boy I have seen it in the children. They are tough as nails. They are more brave in a way than adults when it comes to the big picture. They might scream as they get a nasty shot of heparin in the tummy, which comes due 2 times per week for a little girl I saw. The dang medicine is what hurts. The medicine is made from bovine lung tissue and thins the blood. I had to inject 2 a day for 7 days. My stomach looked like a purple dartboard.

So I can relate with that little girl, but I cannot accept the fact that she could be dying. That's why parents of these children should come together.

Your description of Nick's past surgeries showed me that you have studied the circulatory system, or Nicks at the very least. It all looks tough for now, even though his BP is responding to the med w/o side affects, which is a milestone to me. He could grow right out of all of this. He is young and tough!

UB tough 2

Rj

 

 


luanne320
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 7/4/2006 11:58 AM (GMT -7)   
thanks rj, nick has a wonderful attitude about all this, thank goodness. he has a very strong faith and that is really helping. he's great about all the tests and procedures he has to endure along with all the meds he takes. thankfully he give us very little trouble.

you mention the best foods. we were just discussing making sure he was eating a heart healthy diet. any specific suggestions? we want to give him the best chance of beating this and being able to be active again. i hope he can outgrow this. he will be needing more open heart surgery again soon for his cadaver valve which he's quickly outgrowing. so i'd love for the rest of his heart to be as healthy as possible before then.

Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/4/2006 2:58 PM (GMT -7)   
That is tough for me to know about. I know what is the most recommended diet by many, but it is for adults (?). I like the Mediterranean diet. High in fish, olive oil, salads, nuts, low saturated fat, but some, no transfats. On balance more protein than carbohydrates. I tend to be T2 diabetic and have cast a glaring eye at all the carbs that we as Americans eat. Taters everywhere!

I would do whatever it took to get a great child nutritionist that may specialize in nutrition for growing children, and have severe medical problems. I take a lot of supplements at times, not now because of what meds I am taking and what I am currently experiencing. I do not know what supplements such as Coq-10 would do for Nick.

He definitely needs to stay away from fast/junk foods totally!

luanne320
New Member


Date Joined Jun 2006
Total Posts : 9
   Posted 7/4/2006 7:21 PM (GMT -7)   
actually he was seeing a nutritionist in the past because he tested as having a lot of food allergies. it was decided that since he wasn't having reactions to any of them it was ok for him to have them. but i'm sure i could make another appointment with her to discuss the best diet for him to be on. thank you for that idea.

Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/4/2006 11:04 PM (GMT -7)   
I wanted to mention that Nick should take great care of his kidneys. I know that cranberry juice is good for them. The heart pumps ~1/3 of it's output through the kidneys to be filtered and to have fluid removed. He is taking potent medicines that can change his blood electrolytes including potassium. I would think he could benefit from magnesium supplements. They are good for the heart. Check with his doc, though.

He may should also eat small meals instead of 3 a day, normal meals. As you know, after we eat a large meal, blood is diverted to the stomach and small intestines, away from the brain and heart muscle. This has caused heart attacks in some, I have read.

He is taking medicine that can make him very susceptable to temperature extremes. Heat for me is worse.

Try to keep and watch all of his blood test results. I know that grown folks have to do that on there on. No docs have the time. I hope it is different for children.

You need to be aware of any movement alongside his abdomen (abdominal aorta). Aneurysms are sometimes found during a routine exam. I think that they are felt as a "pulsatile mass" which means it has a pulse and can be seen moving when one is lying down.

Heart valve failure, as you know can come on quick and severe. Extreme lethargy, fainting, etc. Any mental confusion should be instantly associated with his cardiac function.

If he retains fluid, make note of when, and start to weigh him first thing after awakening and before he goes to bed. If you retain water anywhere, you can retain it in your lungs. Fluid on the lungs is serious.

He probably needs to and has reduced his salt intake.

Just trying to think and I guess ramble here,

Rj
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