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

[Rain]

My son and I seen our cardio yesterday.

A couple of years ago the cardio told us that Ry would need surgery at some point in the future. But yesterday he hit me with this.....

He thinks the best time for Ryan to have the surgery is after he graduates from college... two years from now. Yikes!

This is his argument for why the operation should be done sooner than expected.....

1. It would be a good time in Ryan?s life... the time between graduating and finding a job. And of course... he'd be home with Mom to take care of him.

2. Ryan would still be on our insurance. He could be without insurance for a while between going off ours and getting a job w/insurance. And him already being diagnosed with Marfan?s.

3. The surgery would be more a ?preventive? measure than a ?must do?. They would wrap it with the gortex and be able to save the valve. He wouldn?t have to take coumadin. I shudder to think of Ryan on coumadin...

4. Having the surgery would allow him to do all the things he does.. (rock climbing, snow and water skiing, all the things you would expect a kid his age to be doing) without the risk. Ryan still does all these things, even though he?s not supposed to.

I?m just having a really hard time coming to terms with the surgery if his heart isn?t getting any worse. If the echos he has in the next two years show signs that it?s getting worse I?d be the first to say lets fix it! But as a preventive type measure?? I donno..... just wondering what you guys think about it?

The whole thing just really scares me. Ryan is leaning towards agreeing with the doctor... get it over with! His father leans more towards waiting until it is absolutely necessary..... and I'm on the fence!!

I guess my question to you guys is... what would you do if he was your son?

 

[RobThatsMe]

Hi Rain,

WOW... Such a decision to make!

My initial thoughts on this is to ask the question; Approximately how much more time would this buy before corrective surgery would have to take place versus preventative surgery now?

It may be a guesstimet time line, but that would help me if I had to make the choice. Also, Does he currently have any weak spots on his aorta that are being monitored for aneurysm development? If so, how large are they?

Rob

 

[LUVMyBirman]

Hey girl..... tough decision as a parent. Even more so sitting on it for two years. My two or three cents if it were my child.

#1 Get another opinion

#2 Question as to why the two year limit? Seems kind of odd to me. It's either one of two things. He needs it now or we will watch it on a six month schedule.

#3 Would I have an operation as a "preventative" measure with no foresesable danger. No way. How do you know for sure it is going to worsen? This is where your second opinion comes in.

#4 They are telling you they can spare him the valve surgery indefinitley with this premature fix? Hmmmmm????

It's alot to digest for sure. If you can swing it.... find a surgeon with autoimmune/Marfans exposure. There is a good one at Stamford. If you would like...I will get his name for you.

Your family will reamain in my thoughts and prayers.

Now go have yourself a "coke". You deserve it. Make sure you wait until noon.

 

[JimL]

What a difficult decision! The second and third opinion advice sounds good to me.

I wonder about the time in between college and finding a job being the best time. While he's recovering the surgery, he is to present himself for a job....

I wonder if a case couldn't be made that there are other better times for the surgery, such as now, so that he has a couple of years to recuperate during college before he finds a job; or even better, several years after he has a job and is well established.

My two cents comes cheap; but the decision is a difficult one.

 

[John Cochran]

Rain,
I'm agreeing with Gina. You really really need to get another opinion on this one. As we all know too well, the surgery itself has significant risk...I almost didn't survive mine. Doing this as a "preventative" measure is questionable. Also, remember that each year that passes seems to bring better and better options and safer less invasive surgical options.

My best guess is that, within ten years, there will be minimally invasive options with "permanent" tissue valves augmented by stem-cell seeding. But, with the tremendous progress being made, who knows what great options there might be?

Best wishes to both of you...I know how hard this is for you since my own son had to go through heart surgery, too.

--John

 

[ILoVeNY25]

Hi Rain, I'm so sorry to hear about Ryan's condition. I know this must be a very hard decision. I am Ryan's age so I can understand his point of view, It's hard to think of waiting so long till things get worse when you know you're facing the inevitable. I didn't have such a decision when it came down to it. I was told when I was 13 that I would need surgery but they waited and waited and I got worse and worse. I ended up having more damage done to my valves. It started with mitral and aortic and just got worse and damaged the tricuspid and I suffered with Class IV CHF for almost 2 years before surgery. I don't really have an answer for you but I want you to know you and Ryan are in my thoughts and prayers and whatever the outcome I wish you guys all the best. If Ryan feels the need to talk, Just give him my e-mail address. Take care and keep us updated.

 

[Rich]

Rain my very good friend,
I didn't know about this and you know how awful this makes me feel after all you have been through.
I agree with some of the others, get another opinion if possible.
My first instinct would be to wait and not risk surgery if it's not absolutely necessary.
That's a really tough decision and I can only imagine how you feel about now.

 

[ShezaGirlie]

Hi Rain...

Hi Rain...

You've heard good advice here and I also certainly think the very first thing to do is get another opinion.

It concerns me how the cardiologist can pinpoint a surgery date two entire years in the future. Hmmmmm??? And 'preventive' surgery? This isn't a simple procedure.

I don't know how Marfan's affects the heart. Maybe you can enlighten me and maybe others on that. Exactly what is the risk with his current lifestyle?

Right now, I'm sorta siding with old Dad on this one... but will wait for more info. Prayers to your family.

 

[Johnny Stephens]

Rain, this is a tough spot, isn't it? I can't really add anything new here beyond getting multiple opinions. My gut would be to wait till there is a real health-driven need to have the surgery, rather than expose myself to the non-zero risks of surgery when I'm otherwise healthy and happy.

 

[pillarpaul]

Rain,

Is that the son at CSU? If he's on this side of the mountains why not do the multiple opinion suggestion over here? Got Dr. Propp here who you know and my excellent cardio, Dr. Ptasnik at St. Anthony's. Even if they're not available to your insurance, I'd pay about anything to get the opinions, especially for "preventive" major surgery.

Paul

 

[RobThatsMe]

Hi Rain,

Some of the folks here have asked for further explanation about Marfans, Dissections and Aneurysms. I have this site that will help explain this.

http://www.marfan.org/pub/emergency.html

Personally, I would want to know the answers to the questions I ask you earlier, and then seek a second opinion.

Stay positive,
Rob

 

[EVELYN]

Hi Rain

Wow, Girlfriend, what a decidsion to make. For what it's worth, here are my 2 cents:

1. How much do you like and trust your cardio's opinion?

2. How does Ryan feel about getting a second opinion?

3. If he's going to have to have surgery in the future, what point are we talking about and will Ryan's new insurance (when he gets a job) cover it or will it be a preexisting condition?

4. Would it be easier for him to have it done directly after college, before going on the job search; rather than beginning a new job and having to take off for a lengthy period for surgery.

How does Ryan really feel about this whole procedure? I think his feelings have to be top priority once it has been determined that the surgery will have to be within a particular time range.

Good luck........

Evelyn

 

[Nancy]

HI Rain-

I just wanted to tell you how much I admire your thoughtfulness regarding your son. As a parent, having these things to deal with is right at the top with the most difficult situations in life.

I can't add to the great advice you have already had. Just wanted to let you know that I'm thinking of you, Ryan and your family.

 

[richie rich]

rain

if ryan were my son i would not to the surgery yet. i just had my vavle replaced in december. i was 32 years old. little did i know that i was born w/ a bicuspid aortic valve ( found out after surgery). they discovered my leaking valve 3 1/2 years ago when my daughter was born. they watched my progress and at my july 2000 appt they told me that i probably have 10-15 years before surgery. stupid me figured why go to my next check up in july 2001 so i skipped it. 2002 came and i skipped it too. in late october i had some chest pains while mowing the lawn. i went in to get checked out. cardio told me that my heart had increased and that i should get a cardiac cather.. i went in on dec.4 for the cath. on dec. 6th they told me i had one month to have the surgery before permanant damage could occur in my heart. needless to say three weeks later they opened me up doing the minimal invasive. i feel great now. the post recovery period was excellent. driving at 2 weeks post op, walking 3 miles by the end of the first month. back to work at 3 weeks post op.

my long winded point is that things can take a turn for the worst at any time. based on my stupidity ( skipping 2 years of checkups) , if it were my son ( who must also now be checked out, which i have been delaying, he just turned 5 last week) i would get him to go get echo's every six months ( not annually ) until you see his heart dimensions increasing above the normal range. i would then schedule surgery as soon as possible. having insurance is very important but doing the surgery just because he doesn't have a job yet is not wise. he could always go on disability if necessary. the insurance is the key. he is also young and the recovery tends to favor the younger person. he could even do the minimal invasive surgery. he also seems to be very active. i would consider a tissue or homograft. i got a tissue ( medtronic mossaic ) . i was told that hopefully i will get 20-25 years with it . that would put me at the 55 year range for my next surgery. i can live with that. new techiniques will be available by then. good luck with whatever you and your son do.

richie rich

 

[ShezaGirlie]

Good website Rob

Good website Rob

Rain -- from what I read [www.marfan.org] an aortic dissection is the greatest concern. Has Ryan been diagnosed with any of the following:

Dissections that begin away from the heart (Type B or distal dissection) often can be stabilized and may not require immediate surgery. However, a dissection that starts near the heart (Type A or proximal)?in the part of the aorta leading up to the neck?does not tend to stabilize. A dissection in this area is exposed to the full force with which the heart pumps blood on each beat, which extends the tear. Proximal dissections require immediate surgical intervention.

Information gathered from the imaging technology can indicate the likelihood of stabilization. In addition, it is important to see if the aorta in any segment is 5-6 cm or more in diameter, which would indicate elective, if not immediate, surgery. An aorta of 5-6 cm means the aortic wall has been thinned and stretched, and is at a great risk for further enlargement and, potentially, rupture.

Also, it seems blood pressure should be watched carefully -- even medication given. Is Ryan on BP meds? Just a few thoughts....

 

[Brad Nowak]

Rain, you know my story already. Although I don't have Marfan's, I have another type of CTD (Connective Tissue Disorder). Any type of CTD affects the heart valves - they are the largest connective tissue example in the body. The cusps of the valve are sort of folded over and therefore cause the reguritation. Sometimes they may be repaired as Dr. Tirone David initially suspected he could do for me. Turns out that my aortic valve was not repairable, and now I have the St. Jude ticker. NO BIG DEAL! I had this done when I was 17, almost four years ago - no problems whatsoever. My non-medical advice to Ryan - GET IT OVER WITH NOW - it won't go away by itself so why prolong it? Good luck, Ryan - email me if you want to.

 

[Rain]

I thank all of you so very much!

I thank all of you so very much!

Rob, Girlie, Rich, Johnny, Paul, Gina, Jim, John, Evelyn, Brad, Nicole, Nancy & Richie rich.... You guys are terrific!

I apologize for not getting back sooner. Ryan just left today to go back to college. It?s been busy, busy around here. We had started a list of questions for the cardio. After reading your responses I have a lot more to add to it! THANKS!!

Rob, do you think they can give me a fairly accurate answer as to how much time we?d be buying? That would make the decision a whole lot easier. He hasn?t said anything about ?weak spots?... the report says his aorta is 4.4. I thought that was talking about where the valve is... is that really talking about where it has ?ballooned?? Because he just got done telling me the other day that the valve is fine?! He did say Ryan was ?at risk? for an aneurysm... but I thought that was just because of him being diagnosed as having Marfan?s not because of anything he had seen on the echo. He told me that a lot of the basketball pros have Marfan?s and he named three of them that had died on the court! I'm confused.

I agree with all of you that we need more opinions. I?ll get him an appointment with Dr. Propp AND Dr. Ptasnik. But I think I?ll wait until he has the echo done in June... so we can take it with us. He?s only had three echos so far. And he had the test where they inject the dye... I forget what that one was called.

His aorta is bigger than it should be right now. But the echo?s aren?t showing drastic changes. I?m told the amount that his has changed could just be from what point to what point the guy doing the echo measured from. So I?m making sure the same person does his echos from now on.... and my cardio is reading them too. We?ve only done three so far, so we don?t have that much of a history yet.

Gina, the doctor is thinking.. it has to be done at some point.. so why not do it now while he?s on our insurance (that's where the two year thing comes in) and we won?t have to argue about a ?preexisting? condition.... it could be a while before he?s on insurance again. And before the valve is damaged or before Ryan damages it by lifting something heavy or doing something like rock climbing. Also at this point he doesn?t have a permanent job. Although, Jim made a good point that doing interviews soon after surgery may not be the best either! And I keep thinking about what John said about the advances that are being made.

We sent the tape of Ryan?s last echo to a children?s hospital in Denver where there?s a guy who specializes in connective tissue problems. There?s a guy at the Cleveland clinic (Svendson, I think) that is well known for being a Marfan?s doctor... I wonder if we could just send a tape to him? I?ll look into that.

Evelyn, I really like and trust my cardio. But in the last couple of days I?ve realized I need a LOT more information about the condition of Ryan?s heart and even though I totally respect my cardio?s opinion... I need more than one person to tell me my son needs open heart surgery.... in this cir***stance anyway. Ryan is very much involved. From the time he found out he had Marfan?s he started researching it. (Actually wrote his senior paper on it) He?s a common sense kinda person.... he won?t have a problem getting how ever many opinions it takes to make his Mom happy. But in the end it?s still up to him..... and he knows it.

Thank you, Nicole and Brad. You guys are great. And Ryan has the same attitude as you guys do.... GET IT OVER WITH ALREADY!! I will give your e-mail addresses to Ryan, but don?t feel bad if he doesn?t e-mail you. He?s really busy.... he?s taking a really heavy load of courses and he works in the computer lab in his off time. I?ve tried to get him to visit vr.com.... but he swears he only has ?one... maybe two free moments? in his day.... and they are already taken. LOL

Thank you all so much. It's a great help hearing your input. I'm really gonna try to get Ryan to come read the thread.

It's time for that 'coke' Gina!! Wish I could join you for one in AZ!

 

[Rain]

HANK!!!!

HANK!!!!

Hank!!

vr.com is messing with me!! I know how to spell cir***stance.... and I did NOT put stars where the '***' should be!! And I tried to edit it..... tried to fix it.... but it won't let me?!

What's up? Too funny! Make it stop, Hank!!

 

[John Cochran]

Rain,
I think there is some automated censor software on this forum! So I'll test it with some other words below:

cir***stance
re***bent
ac***en

My son hasn't posted on vr.com either, in spite of my telling him how great it is. I suspect that they see it as our "thing" and probably don't want to be sharing a lot of thoughts that they know mom or dad will be reading!

I truly sympathize with Ryan's feeling of "wanting to get it over with." But it's major surgery, and unless your second/third opinions agree that it's time to intervene surgically, I still think it is wise to wait while the technology continues to improve.

--John

P.S. Yup, automated censor software! I typed the words correctly, and it replaces "offending" letters with asterisks! After about 3 beers, I could have a lot of fun with this!

 

[ShezaGirlie]

Sumbunny say "BEER"

Sumbunny say "BEER"

It might be a little ***berson, but if we had a ***ulative effort -- just maybe by some cir***stance, we could all enunciate correctly, and no one act a nin***poop, there might be a little fun in this.

I just know Sr. Mary Evangelist would be proud of me....she didn't get 'bleeped.' Oh my, she might get out the ruler because of that incorrectly spelled word tho! No wonder I didn't graduate summa *** laude!