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#4896 From: "Kristen" <brandk21@...>
Date: Tue Oct 9, 2007 4:16 pm
Subject: Lasik Surgery 		kristen2167
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Has anyone had lasik surgery?  If so how did it turn out?  Any problems
or did you end up wearing glasses again?  Thanks, Kristen

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#4881 From: "Scott Allen" <saazgr81@...>
Date: Sun Sep 30, 2007 1:46 pm
Subject: Sunday Chat 		saazgr81
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I will try being online to cover this.  I have some things to get taken
care of around the house, but will make the effort to be around to
start the chat.

IM at saazgr81 and I will invite you into conference.


Wouldnt hurt to have someone else to assist.  Especially need someone
with surgical experience, in case we have any new people there.

Scott

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#4879 From: Iowa Marf <iowamarf@...>
Date: Sat Sep 29, 2007 10:22 pm
Subject: chats 		iowamarf
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I may not be in chat the next couple weeks, so somebody please post that you are
opening and be the contact person!  If the group is going well and you must
leave someone else can post their IM and the group can continue without
interruption!

Thanks
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#4876 From: "rosalind" <tattyteddybears@...>
Date: Thu Sep 27, 2007 4:15 pm
Subject: welcome 		tattyteddybears
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hi amanda and welcome. here you will find alot of info and meet people
who are in the same boat as you. i havent posted on here much but have
got loads of inofo from others. hope to talk soon.rosalind.

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#4875 From: TallA@...
Date: Wed Sep 26, 2007 9:08 pm
Subject: Re: New To the Group 		tallakrcj
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Welcome to our group Amanda.  Look forward to talking about several subjects, etc.
 
Jon R. in Boston



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#4873 From: "John Hardman" <unc1ebuck@...>
Date: Wed Sep 26, 2007 9:43 pm
Subject: RE: New To the Group 		unc1ebuck
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Welcome Amanda,
Hope you find some useful information and make some new friends.

John (Wallasey/England)

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#4872 From: "girlracergsx" <MandieMark@...>
Date: Wed Sep 26, 2007 7:59 pm
Subject: Pictures 		girlracergsx
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I just posted a few pictures...  But somehow they got posted into
someone else's album...  I'm sorry (and not sure how to fix it)!

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#4871 From: "Amanda Mark" <MandieMark@...>
Date: Wed Sep 26, 2007 7:41 pm
Subject: New To the Group 		girlracergsx
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Hello!
 
I am new to this group.  I am 24 years old, 6'1'' and 98 pounds.  I have been married for a year and four months and just gave birth to a beautiful baby boy seven months ago.  When I was 19, I went to the doctor (yet again) because of back pain I could not get rid of.  Pain medications hadn't worked, and I just wanted answers as to what was wrong with me.  That's when I was diagnosed with Marfan Syndrome.  It was the scariest thing ever.  Since then, I have been constantly researching the disease and participating in whatever research studies I can find related to the disorder.  I chose a pediatrician for my son who is familiar with Marfan Syndrome, and he is watching my son closely.  I guess that's all I can think of for an introduction, and I am REALLY looking forward to communicationg with others who understand what living with this is like.
 
Amanda

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#4868 From: "debsstuff55" <debsstuff1955@...>
Date: Mon Sep 24, 2007 10:10 am
Subject: Re: Hi and I'm back 		debsstuff55
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> What's SVT?
>
Rapid heartbeat. It stands for (spelling doesnt count does it?) Supra
Ventricular Tachycardia.

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#4866 From: Lee Parks <wt_lparks@...>
Date: Mon Sep 24, 2007 3:55 am
Subject: Re: Hi and I'm back 		wt_lparks
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What's SVT?

debsstuff55 <debsstuff1955@...> wrote:
At least I think this is the same group I belonged to a long time ago.
I have two sons, both with Marfans. My youngest, Ryan was diagnosed
when he was 15 by a nurse practitioner. This was after 15 years of me
telling the "real" doctors that I thought there was soething wrong with
him. At least I finally had the answer, even if I didn't like it. Back
then the geneticist said my older son probably had the gene but didn't
exhibit enough of the symptoms to call it Marfans. Recently he started
having problems with SVT and went to see a cardiologist who has now
confirmed the Marfans diagnosis.

Ok, there's my story and if this is the right group and you, even if
it's vaguely, remember us this is just to say Sean and Ryan are doing
great, Sean's a Senior in college and Ryan's a junior. It was hard
letting them go, especially Ryan, with all his problems but they're
both doing very well.


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#4865 From: "debsstuff55" <debsstuff1955@...>
Date: Mon Sep 24, 2007 2:33 am
Subject: Hi and I'm back 		debsstuff55
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At least I think this is the same group I belonged to a long time ago.
I have two sons, both with Marfans. My youngest, Ryan was diagnosed
when he was 15 by a nurse practitioner. This was after 15 years of me
telling the "real" doctors that I thought there was soething wrong with
him. At least I finally had the answer, even if I didn't like it. Back
then the geneticist said my older son probably had the gene but didn't
exhibit enough of the symptoms to call it Marfans. Recently he started
having problems with SVT and went to see a cardiologist who has now
confirmed the Marfans diagnosis.

Ok, there's my story and if this is the right group and you, even if
it's vaguely, remember us this is just to say Sean and Ryan are doing
great, Sean's a Senior in college and Ryan's a junior. It was hard
letting them go, especially Ryan, with all his problems but they're
both doing very well.

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#4864 From: Velda Gauze <veldaroyce@...>
Date: Mon Sep 24, 2007 2:24 am
Subject: Re: Re: Just wondering? 		veldaroyce
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I come from an LDS family too.  My sister is still LDS but I chose another path, she occasionally drops in for chats but is not an actual member of Support & Chat.
 
Velda

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#4861 From: "Scott Allen" <saazgr81@...>
Date: Sat Sep 22, 2007 3:34 am
Subject: Posting from an AFib group. About coumadin/warfrin 		saazgr81
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Wish I had the sourse that this come from, and if I can get the
poster to get me the info, I will certainly post it.



Genetic Test for Warfarin Sensitivity Cleared for Marketing

The FDA has cleared for marketing a genetic test to gauge a patient's
sensitivity to the anticoagulant warfarin (Coumadin).

The Verigene warfarin metabolism test, manufactured by Nanosphere,
detects variants of two genes, CYP2C9 and VKORC1, which can
contribute to changes in warfarin metabolism. The agency says that
about one-third of patients on warfarin "metabolize it quite
differently than expected and experience a higher risk of bleeding."

According to the FDA, "The Nanosphere test is not intended to be a
stand-alone tool to determine optimum drug dosage, but should be used
along with clinical evaluation and other tools, including INR, to
determine the best treatment for patients."

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#4858 From: scott allen <saazgr81@...>
Date: Fri Sep 21, 2007 2:56 pm
Subject: Re: Re: FW: NMF E-mail Network: Johns Hopkins Magazine Article 		saazgr81
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I am HOPING for that Miracle.  My aortic root(4.79 in Feb) is at the size where one cardiologist said I should consider going under the knife "very soon".  At 37 yrs old, I am not eligible for the study.  However, on Oct 1, I go in for another Echo, and see the Cardiologist.  I certainly will be discussing Losartan with him, and maybe get started on the drug.  Not that I will be able to avoid it alltogether, but the longer I can wait for surgery the better. 
 
As for the MVP?  I supposedly had that when I was young.  The testing that I went through in Feb to May, didnt show anything to be concerned about.  We are talking almost 20+ years.  Surprises me that the Mitral Valve Prolapse can just disappear?  Still trying to figure that one out.  Time to start my list of questions so I dont forget all the things I need to ask.
 
Even from my perspective Larie, I dont know what to say.  Until definate answers are known, caution is the best avenue.  Probably dont need another cardio, but need to follow up and watch the condition "just in case". 
 
Scott
Michigan


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#4856 From: larie beck <ty_ree_b@...>
Date: Thu Sep 20, 2007 2:11 pm
Subject: Re: Re: FW: NMF E-mail Network: Johns Hopkins Magazine Article 		ty_ree_b
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I loved that article!
I think Cozar and Losarton are the same drug, just different brands?
I thought it was very interesting tha the article mentioned it may prevent or was it lesson, glaucoma,cateracts,and retinal detachements.
My son Wyatt is 7, and has been on atenolol. His aorta is dilated just under the amount it needs to be for him to participate in the trial so his doc. is willing to change his atenolol to Losartan.
At his appointment yesterday I heard the technition mention the word prolaps. So as we where leaving I asked his doc about it and she said oh ya, he has mild mitral valve prolaps. He had it last time and it has not worsend , just as his aorta has not. Im just wondering why wouldnt she have mentioned it at the last appt. Should I be thinking about getting my son a different cardiologist? Or is mild mitral valve prolaps just not a big deal?
 
Blessings everyone!
Larie


goofbabe7 <goofbabe7@...> wrote:
My son Noah who is 6 and a half now was first put on Atenolol. He was
on it for a little over a year. When we got stationned back here in
the U.S (we were in Japan on AFB) He got new doctors and after another
6 months was put on Cozarr. It is the first of a new class of blood
pressure medications called angiotensin II receptor antagonists.
Cozaar works, in part, by preventing the hormone angiotensin II from
constricting the blood vessels, which tends to raise blood pressure.
The Atenolol didnt work well with his Asthma and all the medication he
was taking for that so they put him on the Cozzarr instead. So far it
has been working better. I dont know if any of you with children out
there have tried these but I just wanted to say thanks for the post
cause I didnt get to see that article.

Becky


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#4855 From: "goofbabe7" <goofbabe7@...>
Date: Thu Sep 20, 2007 6:19 am
Subject: Re: FW: NMF E-mail Network: Johns Hopkins Magazine Article 		goofbabe7
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My son Noah who is 6 and a half now was first put on Atenolol. He was
on it for a  little over a year. When we got stationned back here in
the U.S (we were in Japan on AFB) He got new doctors and after another
6 months was put on Cozarr. It is the first of a new class of blood
pressure medications called angiotensin II receptor antagonists.
Cozaar works, in part, by preventing the hormone angiotensin II from
constricting the blood vessels, which tends to raise blood pressure.
The Atenolol didnt work well with his Asthma and all the medication he
was taking for that so they put him on the Cozzarr instead. So far it
has been working better. I dont know if any of you with children out
there have tried these but I just wanted to say thanks for the post
cause I didnt get to see that article.

Becky

Reply | Forward | Messages in this Topic (4)
#4854 From: "Iowa Marf" <iowamarf@...>
Date: Thu Sep 20, 2007 5:04 am
Subject: FW: NMF E-mail Network: Johns Hopkins Magazine Article 		iowamarf
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From:  NMF Network <nmfnetwork@...>
  
  
  
      
        
      
      
National Marfan Foundation
    
  
  
    
  
  
    
  
  
    
  
  
  
National Marfan Foundation
      
  
In case you haven't seen this yet, here is a fabulous article (the cover story) from Johns Hopkins Magazine about Hal Dietz, MD, and the evolution of his work with losartan. The promise of losartan is addressed in conjunction with a most heart-wrenching case history of a very young boy who was seriously ill due to Marfan syndrome. As the article explains, the prognosis for the boy was not good, so Dr. Dietz in conjunction with the family opted to try losartan, which was already approved by the FDA for other indications. While the boy continues to face an uphill battle due to a variety of complications of Marfan syndrome, his situation is not as dire as it once was.
 
 

The NMF continues to urge its members to consider enrolling (or enrolling their children) in the clinical trial: Beta blocker therapy (atenolol) vs.  Angiotensin II receptor blocker therapy (losartan) in individuals with Marfan syndrome. The clinical trial is the only way we can obtain answers to questions vital to the management of Marfan syndrome. It is the only way accepted by the medical community to find out if losartan is effective in people and, if effective, the way it can become an accepted standard of care for Marfan syndrome. Having an established and documented standard of care will make it much easier to get medical insurance to cover the cost of losartan therapy.

 

There are approximately 117 patient enrolled to date. Please continue to urge those you know to participate. For more information, they can visit the NMF website (www.marfan.org)

      
      
      
  
      
      
      
    
This email was sent to iowamarf@..., by nmfnetwork@...
National Marfan Foundation | 22 Manhasset Avenue | Port Washington | NY | 11050


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#4853 From: Lee Parks <wt_lparks@...>
Date: Thu Sep 20, 2007 4:30 am
Subject: Re: Re: Just wondering? LDS and sounding stupid? 		wt_lparks
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Curiosity and the attempt to gain knowledge, even the in the smallest degree, never sounds stupid...at least not to the intelligent.

Alisha <hunny_bunny_of_mine@...> wrote:
Ok this is going to sound stupid but, what is LDS?

Alisha

--- In marfans_support_and_chat@yahoogroups.com, "tammyranft"
<tammyranft@...> wrote:
>
> I am just wondering if there are any Marfan patients that get on
this
> site that are LDS....Tammy.
>


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#4852 From: Lee Parks <wt_lparks@...>
Date: Thu Sep 20, 2007 4:24 am
Subject: Re: Re: Just wondering? LDS 		wt_lparks
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LDS is short for Latter Day Saints. Latter Day Saints is short for Church of Jesus Christ of Latter Day Saints.
 
But the shortest name (and probably the most recognizable) is Mormons.
 
And yes, there are some out here with Marfan. In my family of seven Mormons, three of us are Marfan people.
 
OK Lee

Tammy Ranft <tammyranft@...> wrote:
Mormon.

Alisha <hunny_bunny_of_mine@yahoo.com> wrote:
Ok this is going to sound stupid but, what is LDS?

Alisha

--- In marfans_support_and_chat@yahoogroups.com, "tammyranft"
<tammyranft@...> wrote:
>
> I am just wondering if there are any Marfan patients that get on
this
> site that are LDS....Tammy.
>



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#4851 From: Tammy Ranft <tammyranft@...>
Date: Thu Sep 20, 2007 3:22 am
Subject: Re: Re: Just wondering? 		tammyranft
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Mormon.

Alisha <hunny_bunny_of_mine@...> wrote:
Ok this is going to sound stupid but, what is LDS?

Alisha

--- In marfans_support_and_chat@yahoogroups.com, "tammyranft"
<tammyranft@...> wrote:
>
> I am just wondering if there are any Marfan patients that get on
this
> site that are LDS....Tammy.
>



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#4850 From: "Alisha" <hunny_bunny_of_mine@...>
Date: Thu Sep 20, 2007 1:05 am
Subject: Re: Just wondering? 		hunny_bunny_...
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Ok this is going to sound stupid but, what is LDS?

Alisha


--- In marfans_support_and_chat@yahoogroups.com, "tammyranft"
<tammyranft@...> wrote:
>
> I am just wondering if there are any Marfan patients that get on
this
> site that are LDS....Tammy.
>

Reply | Forward | Messages in this Topic (6)
#4849 From: "tammyranft" <tammyranft@...>
Date: Thu Sep 20, 2007 12:55 am
Subject: Just wondering? 		tammyranft
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I am just wondering if there are any Marfan patients that get on this
site that are LDS....Tammy.

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#4848 From: "goofbabe7" <goofbabe7@...>
Date: Thu Sep 20, 2007 12:31 am
Subject: Feels like were always waiting don't it? 		goofbabe7
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Hello all . Its been a while since I have written. My husband is
back from Iraq now safe and sound. My son Noah is the one with
Marfan's. We have had alot of appointments in the last two months.
They changed his heart medicane again. Now the aorta is not in risk
of colapsing but has thined out and is at risk for tearing now! SO
they upped his heart medicane. This only means the back surgery he
was suppost to have will be put on hold again. He is getting a back
brace that he is gonna have to wear for 20 hours a day for 6 months
until we go back to the Cardio doc and he give the thumbs up that he
is in the clear. He needs the aortaic valve replacement that I see
so many of you all talking about but they say he is not strong
enough for that surgery yet and his odds are not good for it.
Getting a dentist for him with our insurance is Hell. They all want
to pass the buck off. The dental insurance says its a medical
procuder and medical insurance has to pay for it . THen the medical
insurance says its a dental procdure and that they have to pay for
and still nothing gets done. Anyway Just wanted to  throw out an up
date for you all. I read all the emails even though I dont get a
chance to respond. Sorry for the spelling. I was never good at
spelling.

Thanks
The Bevil's

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#4846 From: "iowamarf" <iowamarf@...>
Date: Wed Sep 19, 2007 7:55 pm
Subject: New pictures 		iowamarf
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Thanks for sharing pictures Kelley!

Did you get moved last month like hoped?  I'm sure it's nice to be
back "home"!

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#4840 From: "Iowa Marf" <iowamarf@...>
Date: Sat Sep 15, 2007 5:47 pm
Subject: losartan article 		iowamarf
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I got this from NMF and thought I'd share!
 
" I want to let you and others in the support group know about an article that just came out in Hopkins Medicine, online at www.hopkinsmedicinemagazine.org , It features Hal Dietz, a boy named Blake and of course, the "Hopkins Losartan Mice Brigade".  A very uplifting article that would be good  for everyone to read.  I have the actual magazine issue but the whole article is also found online.  "

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#4839 From: "Iowa Marf" <iowamarf@...>
Date: Sat Sep 15, 2007 4:51 pm
Subject: FW: NMF E-mail Network: NMF Publicity Opportunity with Discovery Channel 		iowamarf
Offline Offline
Send Email Send Email
 



From:  NMF Network <nmfnetwork@...>
Reply-To:  publicity@...
To:  iowamarf@...
Subject:  NMF E-mail Network: NMF Publicity Opportunity with Discovery Channel
Date:  Fri, 14 Sep 2007 15:37:51 -0400 (EDT)

  
  
  
      
        
      
      
National Marfan Foundation
    
  
  
    
  
  
    
  
  
    
  
  
  
National Marfan Foundation
      
  
The National Marfan Foundation is seeking a family affected by Marfan syndrome for an opportunity with Discovery Channel. The producer is looking for a family that:
  • Has "classic signs of Marfan syndrome"
  • Can trace it back "at least a few generations"
  • Be comfortable and "confident enough" to be taped for television

If you fit these criteria, please email me with the following information:

  • Name, location, daytime phone number, email
  • Who in your family is affected (and a little about the "classic signs" that you display)
  • A little about your family history
Discovery Channel featured Marfan syndrome a number of years ago. It was a highly effective segment that resulted in many inquiries to the NMF. I am confident that we helped a lot of people through that program, which was re-run a number of times. A lot has changed since this show aired, and we are very excited to have an opportunity to do another segment on Discovery.
 
The producer wants to talk to a number of families by phone before selecting one. Before I give him anyone's information, I will certainly be in touch with you first.
 
Please feel free to email me or call me if you have any questions. Thank you in advance for helping us increase awareness of Marfan syndrome. Through your interest in sharing your experiences we can help others, and maybe even save their lives.

Eileen Masciale
 
Director of Communications
National Marfan Foundation
 
Tel: 631.665.2163
Fax: 631.967.1799
publicity@...
      
      
      
  
      
      
      
    
This email was sent to iowamarf@..., by nmfnetwork@...
National Marfan Foundation | 22 Manhasset Avenue | Port Washington | NY | 11050


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#4835 From: Suzie Glassey <soozeege@...>
Date: Fri Sep 14, 2007 8:22 am
Subject: Re: I'm Back 		soozeege
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Hi John
glad to have you back. What happened to cause you to have a wheelchair?
Sue

John Hardman <unc1ebuck@...> wrote:
Hi Everyone,
Just incase anyone missed me, Just spent 2 years in Clatterbridge Hospital
(Wirral, England), recovering from a total Aortic replacement and some other
bits of plumbing. Unfortunately I got the wheel chair to prove it. I have
just been through my INBOX my god you lot have been busy 101,000 messages
quite a lot from marfans_support_and_chat. Anyway hope your all well

John

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#4831 From: "John Hardman" <unc1ebuck@...>
Date: Tue Sep 11, 2007 9:37 am
Subject: Re: I'm Back- and Total Aortic Replacement 		unc1ebuck
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Lee asked - Was this total replacement done as a result of going to the
emergency room or did they observe it and do an elected surgery?

The surgeon has been keeping an eye on me for a while, he had warned me I
needed a big plumbing job doing.  He had set it up with another surgeon who
also does some Marf work, in the end however I needed it doing quicker than
he was planning.

Cheers

John

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#4830 From: Lee Parks <wt_lparks@...>
Date: Tue Sep 11, 2007 9:24 am
Subject: Re: I'm Back- and Total Aortic Replacement 		wt_lparks
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Was this total replacement done as a result of going to the emergency room or did they observe it and do an elected surgery?

John Hardman <unc1ebuck@...> wrote:
"Did you have any aortic surgery prior to this one? How long were you on the
choppin' block?"

Yep, I had an aortic repair 11 years ago(this is when I found out I was a
Marf), and I had the repair, repaired 4 years ago. I'm told I was on the
table 3 times in 3 days 20 hours and two 12 hour slots.

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#4828 From: "John Hardman" <unc1ebuck@...>
Date: Mon Sep 10, 2007 11:31 am
Subject: Re: I'm Back- and Total Aortic Replacement 		unc1ebuck
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"Did you have any aortic surgery prior to this one? How long were you on the
choppin' block?"


Yep, I had an aortic repair 11 years ago(this is when I found out I was a
Marf), and I had the repair, repaired 4 years ago.  I'm told I was on the
table 3 times in 3 days 20 hours and two 12 hour slots.

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