Heart surgery sooner rather than later for my 19 year old...

[LUVMyBirman]

Rain moving from one insurance to the next with a prexsisting is easily done. I have been on three different policies including cobra since my MVR. Not a single argument.

Though, I will tell you if Ryan lets his insurance lapse at any point they most likely not cover his heart condition.

Rule of thumb these days with a preexisting.....never let your coverage lapse!

 

[pillarpaul]

C***ome Fly With Me

C***ome Fly With Me

Rain,

After I read the ***ulative responses, especially those by "Girlie", I looked up at the beautiful ***ulo-nimbus clouds in the sky today and thought about that famous line from the poet ee ***mings, "..." oh wait, I don't remember it, but don't you just love Indian food and its heavy use of curry and ***in? After a spicy meal like that I enjoy a soothing fruit such as a ***quat. Well, would love to chat more but have to attend a wedding - got to get my tuxedo and ***merbund on. It's in***bent upon me to get going right now.

Paul

 

[John Cochran]

I think we've discovered a new side-effect of being on a heart-lung machine

 

[hensylee]

Rain - I can't say a lot on this subject except that everybody has jumped in and helped as always. Isn't it wonderful. This is a really tough decision for you.

There is one thought I had, tho. After reading our cutie pie's (Brad) post, I wondered just how Ryan feels about it all. If he doesn't get it done, how will it affect his everyday living? Will he be more careful and feel he has a disability of sorts? If he does get it done, will he feel he's been pushed into it too soon? Think maybe he and you must be very frank with his cardio along these lines, as well as the ones regarding the actual heart issues. Young folks are affected so much by health issues, especially since they are supposed to be invulnerable to being hurt or injured or being ill. My best to you, my dear - it ain't easy being mom - it, also ain't easy being child. God be with you all. Ann

 

[RobThatsMe]

Hi Rian,

So good to hear back from you. I am going to try and answer the questions you asked me.

"Rob, do you think they can give me a fairly accurate answer as to how much time we?d be buying? "

They may be able to give you some kind of approximate timeline. However, I think that answers relies heavily on his current condition. You mentioned in your letter that his aorta has enlarged to 4.4 cm. This could be a sign of things to come. The average size of the aorta is 3.0 cm. When the aota enlarges, it isn't growing more tissue to enlarge. It is stretching, and as it stretches, the inner aotic wall is stretched and weakened. Heavy lifting and / or high blood pressure could then cause a tear resulting in an aortic dissection, which as you know is a major concern for those with Marfans.

My doctor is currently monitoring several areas of my aorta for expansion. He tells me not to worry about it, and that the only action necessary for now is medication. But, when it reaches 5.0 cm, it's time to consider surgery.

I know that many of us are hopeful of future advances in heart surgery. Heart surgery is one thing, and has, and is, making medical advancements in leaps and bounds. The "plumbing" going into and out of the heart is quite another matter. There is not enough attention paid to aneurysm / dissection research and advancements in this country.

You also mention that the doctors are using echo cardiograms to monitor his condition. I think you should discuss changing this to CT Scans. It is the most accurate method of monitoring and measuring his aorta.

Here is some more info on this.

How are AORTIC ANEURYSMS and DISSECTIONS detected. ?

Patients sometimes detect an aneurysm by feeling a pulsating mass in the abdomen, or it may be found by their physician during a routine physical examination. The best way to detect unsuspected aortic aneurysms is by an ultrasound or CAT scan of the abdomen. Ultrasound is quick, inexpensive, non-invasive, and accurate; if the aorta can be seen, the presence of an aneurysm can be identified or excluded. CAT scans of the abdomen remain the most accurate tests for aortic aneurysm, both for initial detection and for determining aneurysm size. They provide information equal to MRI scans.

As always, this is just my 2 cents worth. I truly hope your inquiries, visits with the doctors and conversations with Ryan results in a positive plan for you and him. I'll keep you both in my thoughts and prayers as you face this together.

Rob

 

[Rain]

Never mind, Hank... I reread it and decided I better edit it myself!!

Never mind, Hank... I reread it and decided I better edit it myself!!

Paul and Girlie.... ya know, here I am just a minding my own business, innocently talking about my teenager needing heart surgery and ?whamo?!

Gina, I didn?t realize it was so easy to move him from one policy to another. I know for sure if he gets married, quits school or turns 24 he?s off of our policy. Ya think this could be a way of keeping him in school for another two years?!! Can you get a doctorate in Civil Engineering?

Ann, yes, Ryan?s condition should effect his activities. His cardio told him not to do anything that puts strain on the heart. He was told this for the first time after a sports physical the fall before his senior year in high school. You have to understand that from the time he was five years old Ryan has competed in swimming, wrestling and football. The doctor at first signed the physical & Ryan turned it in and began football practice. It was me who later quizzed our PCP about Ryan?s heart and asked him if he didn?t think we should do an echo. Well, after reading the results they said, ?oops, sorry, Ry... you can?t participate in high school sports? Well.... Ryan had already turned in the first one, saying it was okay... Sooo the only thing that was going to keep him from it was if Mom went to the school and had a little chat with the athletic director.... I didn?t. But still the Atenolol was making him tire easily and I think he was thinking about the dangers... he was researching and writing a senior paper on Marfan?s at the same time all this was going on. What should have been one of the best years of his life was a little disappointing to him. The whole point is... Ryan is going to do what Ryan is going to do. He?s not ignorant to the dangers, but he refuses to let it dictate his life. (Wonder where he got that attitude?!) Thank goodness he doesn?t smoke, drink or do drugs. But we?re an outdoors kind of family and he is a very active person. College has slowed him down a bit, but that?s only because he doesn?t have time. I think you could cut off both his legs and he wouldn?t feel like he had a disability... he?d keep on keepin on.

You know what, Rob. Ryan is 6'8" tall. Not huge in build... average kinda guy...but very tall. I asked the cardio.. ?you know .. he?s a big kid, so do all those numbers still apply?? I mean a 6'8" guy isn?t going to have the same size of a heart as a 5' tall guy. So wouldn?t all the numbers be a little different? He still seems to think the numbers would be fairly close. But I wonder. He said it was obviously dilated... you could tell by the size in relation to the rest of his heart. Hey, how about this....? If that is the area where it?s dilated then couldn?t they measure an area that isn?t dilated and tell me what ?normal? is for him?

They did do a ?cat scan angiogram of his aortic root and arch? last summer. But I didn?t get a copy of that report. Do they do measurements of the heart with that test? They must. I?m gonna get a copy of that report. I have copies of each of his echo reports, but they are inconsistent! Like one actually said his dilated aorta went from 4.6 to 4.4 (the last report)!! My cardio said that is impossible, so from now on we?re having all echos done in Durango with the same person doing them each time. I think the discrepancies are why he decided to do the CAT.

Thanks again!!