How soon is too soon?

[Rain]

Thank you

Thank you

Thank you Sylvia, John, JoAnn and Nan and everyone.

Thank you so very much. We?re seeing the surgeon in Durango when Ry is home. I?m thinking that we?ll talk to him about more tests and what ones he thinks might give us the answers we want. Ryan is in school in Fort Collins. There?s a hospital there ?Heart Hospital of the Rockies? I think. So he could do tests there and still make it to classes.

It amazes me how Ryan can talk about odds and percentages and appear so calm about the whole thing. I know on some level he has to be scared too... but he?s sure not letting me see it.

 

[Gail in Ca]

Not to scare you, but just for info, my aneurysm was discovered 6 weeks before my surgery, at 6cm.
When the surgeon went in to repair it , it fell apart in his hand and had to be cut out and the dacron sewed in. He was going to wrap the aorta around the graft, but it fell apart.
Gail

 

[Dee]

Hi Rain,
I'm a new member and just saw your post. Sorry to hear about your son. I also live in Western Colorado. I had my mitral vavle replaced in Oct. and had it done at St. Mary's Hospital in Grand Junction. We did as much research as possible in a short amount of time, as my surgery was an emergency, but we found that St. Mary's Cardiac unit is one of the top in the state of Colorado. From my experiene there, I would have to agree!!! My surgeon was Dr. Mary Wollmering and she was absolutely wonderful!!! She is fairly new to Grand Jct. but came from University hospital in Denver and in Utah. At the time of my surgery she had done 1400 open heart surgeries. I just can't say enough good about her and the entire staff in the Cardiac unit there. If you're looking for a second opinion that might be an option. It's fairly close to home and I have heard many other success stories from heart patients there. It's just a thought. I wish you the best of luck and feel bad for what you're going through. Hang in there and stay positive!!!
Sincerely,
Dee

 

[Michelle]

Rain,
As common as this valve issue is with marfins, you'd think there would be an MRI machine to handle the height issue. ugh! I am so sorry that you have to deal with this. We love you Rain! OUr thought and prayers will be with you.

 

[Karlynn]

Rain,
Don't know how I missed your 2 most recent posts on your thread. Just wanted you to know that I'm still sending prayers to Colorado.

 

[bvdr]

High Rain,

I've been following your thread on Ryan. I know how much you love him and how hard this is on you.

The issue of not fitting into the MRI machine is unreal! I hope you can arrange other tests near his school so if this needs to be done now (particularily while he is on your insurance) then you will be ready to go.

You are in my thoughts and prayers.

How is Ryan's mom doing these days?

 

[Kathy]

Rain,

I haven't been online consistently and missed this thread.

I can't imagine being in your shoes. At the time I had surgery I was asking, "Why me?" Someone said, "Would you rather it was your husband or your child?" It seemed as though a flash went through my body as that instant "tiger mother" instinct hit me.

I was thinking about myself as a 21 year old and wondering how I would have handled a situation like that. It dawned on me that my mom had died at 18 and I did handle big issues at that time. I think it appeared to everyone that I did well and I was able to function normally, but at a big emotional cost. The issues followed me until my mid-thirties when I finally saw a therapist.

My step-daughter is a very logical and academically accomplished, but she needed a lot of help working through some personal issues at that age.

So although I would agree with others that Ryan needs to make the decision, I believe that your guidance will be helpful.

I am praying for peace of mind for you.

 

[Rain]

I appreciate all of you so very much. Thanks for 'being there' for me.

I appreciate all of you so very much. Thanks for 'being there' for me.

Dee, thanks for the info. Grand Junction is only a 3 ½ hour drive from here. I didn?t know they did surgeries there. It?s always nice to know all your options!

Kathy, I know I could sway his decision.... but I?m not going to. If he was younger or less informed, or I was sure he was making the wrong decision, I would. He does still need guidance and I?ll be right beside him every step of the way. My kids are my life. I think that makes it a little easier for him. It really helps to have a strong network of people who care about you. He?s a wonderful person with a lot of friends and family.

Michelle... they said this is the first time that ever happened.. (that someone was too tall for their machine) then in the next breath they said it worked best for people up to 6'!!! Okay... ???!!! I happen to know there are a lot of people in this world over 6'. Crazy, I tell you.. the whole thing is just crazy! We all know one of the main characteristics of Marfan?s is being exceptionally tall! And I just read this in the Marfan?s newsletter..

?While echocardiography is excellent for monitoring the status of the aortic root and ascending aorta, it is less reliable at evaluating the descending thoracic or abdominal aorta. For this reason, reliable monitoring will require either a CT scan with contrast or a magnetic resonance imaging (MRI) study.?! !! Grrrr...

And this in the same newsletter.........

?The same exercise restrictions apply as before the surgery. People should avoid contact sports, competitive sports and exercises that involve muscle straining. This includes exercises that involve straining against the weight of the body such as sit-ups, and pull-ups?

Take a deep breath Rain. Some days I could just sit down and cry. I can?t express how much I hate it that he has to live with this. I know there are a lot of people with worse problems... but I can?t help it. I think every parent would give anything for their children to have perfect health. I didn?t even know there was such a think as Marfan?s when I had my children. Maybe it?s a good thing I didn?t...... what if I?d have known and been afraid to have them?!! What a profound point to ponder.

 

[Michelle]

Rain

Rain

Thank Heavens you did have them, from all I have heard about your children, the world is a better place because they are in it!

And even though it stinks that Ryan has to live with this, at the same time it has contributed to who he is. Sometimes adversity and trials shape us into wonderfull people. Ryan is resourcefull, strong and has a huge zest for life and living.

I have a feeling he will always land on his feet!

Keep breathing, and loving and know they are both lucky to have you!

 

[Marge]

<< Take a deep breath Rain. Some days I could just sit down and cry. I can?t express how much I hate it that he has to live with this. I know there are a lot of people with worse problems... but I can?t help it. I think every parent would give anything for their children to have perfect health. I didn?t even know there was such a think as Marfan?s when I had my children. Maybe it?s a good thing I didn?t...... what if I?d have known and been afraid to have them?!! What a profound point to ponder. >>

Rain, I've been following this thread with heart ache and sympathy but not knowing what to say. I can't imagine what it must be like for you to deal with this.

Yes, in a way, I can, I think. My mom had to deal with me having an unusual circulatory condition for which the surgery was very iffy at the time ... She had to take me from Texas (where we lived at the time) to Children's Hospital in Cincinnati because that was where surgeons were who had worked in this area. I had two surgeries, one when I was five and a follow-up at six, and I was OK for a long time -- until I was in my early 30's and eventually had to have an arm amputated. My mom was on her own during the childhood surgeries (my dad had to stay in Switzerland -- long story). My poor mom had to make ALL the decisions. She did a wonderful job, but she beat herself up over it. I think she ALWAYS thought it was somehow her fault that I had this "congenital" condition. You could tell her, no, it had nothing to do with any fault on your part, but she didn't really believe it. I think all mothers are the same, when their kids have these problems. Despite everything, though, she and I had a really good life together. (I miss her now, but in a way I am kind of glad I didn't have to think about how to break the news to her about my current problem. "Hey, mom, btw, they say I need open-heart surgery... ")