Re: yep, its cardiomyopathy! Help?

[Guest guest]

Cameron unfortunately has a right abberent subclavian artery

if you get to see your cardiologist, would you mind asking him if this is a rare finding? My cardio j ust seems amazed this is a finding in the right and not the left...

deb

[Guest guest]

Cameron unfortunately has a right abberent subclavian artery

if you get to see your cardiologist, would you mind asking him if this is a rare finding? My cardio j ust seems amazed this is a finding in the right and not the left...

deb

[Guest guest]

Deb, I am so sorry to hear this. Poor ! He is such a trooper for all he

has to go thru, and you too! I hope you get some aswers and a plan of action.

Will be thinking of you guys and praying. . . .

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Deb, I am so sorry to hear this. Poor ! He is such a trooper for all he

has to go thru, and you too! I hope you get some aswers and a plan of action.

Will be thinking of you guys and praying. . . .

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Deb,

I am so sorry. Cameron unfortunately has a right abberent subclavian artery. I was just asking his doctor about it because we never had our year follow up at Children's and now it has been 18mo. Guess I better push for that.

-----Original Message-----From: VisibleWorship@... Sent: Wednesday, December 11, 2002 6:02 AMTo: mito Subject: yep, its cardiomyopathy! Help?Hi all...can some of you heart experts help me out here...

Yesterday we went to the cardiologist and they found a very unusual problems...one our cardio hasn't seen in his 20 years of practice...We started seeing Dr B in August after I talked with the cardiologist at the Conference and he told me that since was born with a cardiomyopathy that it could very likely come back. Dr B actually knew before we did and diagnosed it when he was an infant and when Iwent back to him when was a year old, he discharged us saying that he had outgrown it. The diagnosis was Left-Ventricle Hypotrophy.When was 11 months, he still threw everything but formula up...so we had an upper GI and they found an Abberant Right Subclavian which was wrapped around his trachea and esophogus. A cardiovascular surgeon removed it about a week later and this can never come back. Altho every time I am in there Dr B marvels at it being the Right b/c it is usually the left. ( and the others, is yours right or left?)When we went this august everything was fine...no problems but he wanted to see every six months given he was already prone to heart problems and the risk of cardiomyopathy to mito kids.Then at the end of September, when the pulmonologist did a general xray he said that had a 'generous' heart...I called Dr B and he said that wasn't possible b/c he had just done the echo and it was way better than an xray so I let it go.Then when we were at the ER last week for the extreme fatigue, they did a chest xray to check for pneumonia and told me his heart was enlarged. I relayed the story I just told you and asked them to check again. They did and he had three docs look at it and they all agreed and he told me to follow up with the cariologist, which I did.So we went in yesterday and he told me that he gets a couple referrals a month for cardiomegaly and never in his career has one been right, so its probably fine. They did the EKG and it showed a small problems. He personally does the echo's and he spent about 30 minutes on it...at first he told me everything was fine b/c he was looking at the front part...he said the Left Ventricle is perfect. Then he noticed a very unlikely problem. He saw an enlargement near the pulmonary vaulve which is very unusual. He possibly saw two problems and mentioned several possiblities. He said we would learn together b/c this was really puzzling.The official impression was 'Right Ventricle output track dialitation consistent (but not diagnostic) with Right Ventricle Dysplasia". He told me would very likely develop rhythm problems whcih may include carrying a portable dephibrilator (that would be the scary part! )...he said if he ever fainted to bring him straight in the office and if they are closed to the ER and have him paged...and he said he just dind't know what to make of the whole thing.Then he asked me when we were seeing Korson again and I told him wasn't supposed to be until February but I was thinking of taking him earlier b/c I feel like everything is so out of control here...he said to get them to do an echo there b/c they would wanna see this. I told him my insurance wouldnt' pay for it and he said...oh it wouldn't matter...this is so wierd they would be priveleged just to see it! So who knows... Korson said the wierdness was that the first part of the diagnosis is a cardiomyopathy consistent with mito and then second part would be something andrew was born with...so we will just have to walk it out.but the part with his heart just stopping, scares the living daylights out of me!debPlease contact mito-owner with any problems or questions.

[Guest guest]

Deb,

I am so sorry. Cameron unfortunately has a right abberent subclavian artery. I was just asking his doctor about it because we never had our year follow up at Children's and now it has been 18mo. Guess I better push for that.

-----Original Message-----From: VisibleWorship@... Sent: Wednesday, December 11, 2002 6:02 AMTo: mito Subject: yep, its cardiomyopathy! Help?Hi all...can some of you heart experts help me out here...

Yesterday we went to the cardiologist and they found a very unusual problems...one our cardio hasn't seen in his 20 years of practice...We started seeing Dr B in August after I talked with the cardiologist at the Conference and he told me that since was born with a cardiomyopathy that it could very likely come back. Dr B actually knew before we did and diagnosed it when he was an infant and when Iwent back to him when was a year old, he discharged us saying that he had outgrown it. The diagnosis was Left-Ventricle Hypotrophy.When was 11 months, he still threw everything but formula up...so we had an upper GI and they found an Abberant Right Subclavian which was wrapped around his trachea and esophogus. A cardiovascular surgeon removed it about a week later and this can never come back. Altho every time I am in there Dr B marvels at it being the Right b/c it is usually the left. ( and the others, is yours right or left?)When we went this august everything was fine...no problems but he wanted to see every six months given he was already prone to heart problems and the risk of cardiomyopathy to mito kids.Then at the end of September, when the pulmonologist did a general xray he said that had a 'generous' heart...I called Dr B and he said that wasn't possible b/c he had just done the echo and it was way better than an xray so I let it go.Then when we were at the ER last week for the extreme fatigue, they did a chest xray to check for pneumonia and told me his heart was enlarged. I relayed the story I just told you and asked them to check again. They did and he had three docs look at it and they all agreed and he told me to follow up with the cariologist, which I did.So we went in yesterday and he told me that he gets a couple referrals a month for cardiomegaly and never in his career has one been right, so its probably fine. They did the EKG and it showed a small problems. He personally does the echo's and he spent about 30 minutes on it...at first he told me everything was fine b/c he was looking at the front part...he said the Left Ventricle is perfect. Then he noticed a very unlikely problem. He saw an enlargement near the pulmonary vaulve which is very unusual. He possibly saw two problems and mentioned several possiblities. He said we would learn together b/c this was really puzzling.The official impression was 'Right Ventricle output track dialitation consistent (but not diagnostic) with Right Ventricle Dysplasia". He told me would very likely develop rhythm problems whcih may include carrying a portable dephibrilator (that would be the scary part! )...he said if he ever fainted to bring him straight in the office and if they are closed to the ER and have him paged...and he said he just dind't know what to make of the whole thing.Then he asked me when we were seeing Korson again and I told him wasn't supposed to be until February but I was thinking of taking him earlier b/c I feel like everything is so out of control here...he said to get them to do an echo there b/c they would wanna see this. I told him my insurance wouldnt' pay for it and he said...oh it wouldn't matter...this is so wierd they would be priveleged just to see it! So who knows... Korson said the wierdness was that the first part of the diagnosis is a cardiomyopathy consistent with mito and then second part would be something andrew was born with...so we will just have to walk it out.but the part with his heart just stopping, scares the living daylights out of me!debPlease contact mito-owner with any problems or questions.

[Guest guest]

Not an expert! But, Deb -- just one more challenge to face. is in good hands -- your hands, and you are doing everything possible to help him.

Sue Ann

yep, its cardiomyopathy! Help?

Hi all...can some of you heart experts help me out here...

Yesterday we went to the cardiologist and they found a very unusual problems...one our cardio hasn't seen in his 20 years of practice...We started seeing Dr B in August after I talked with the cardiologist at the Conference and he told me that since was born with a cardiomyopathy that it could very likely come back. Dr B actually knew before we did and diagnosed it when he was an infant and when Iwent back to him when was a year old, he discharged us saying that he had outgrown it. The diagnosis was Left-Ventricle Hypotrophy.When was 11 months, he still threw everything but formula up...so we had an upper GI and they found an Abberant Right Subclavian which was wrapped around his trachea and esophogus. A cardiovascular surgeon removed it about a week later and this can never come back. Altho every time I am in there Dr B marvels at it being the Right b/c it is usually the left. ( and the others, is yours right or left?)When we went this august everything was fine...no problems but he wanted to see every six months given he was already prone to heart problems and the risk of cardiomyopathy to mito kids.Then at the end of September, when the pulmonologist did a general xray he said that had a 'generous' heart...I called Dr B and he said that wasn't possible b/c he had just done the echo and it was way better than an xray so I let it go.Then when we were at the ER last week for the extreme fatigue, they did a chest xray to check for pneumonia and told me his heart was enlarged. I relayed the story I just told you and asked them to check again. They did and he had three docs look at it and they all agreed and he told me to follow up with the cariologist, which I did.So we went in yesterday and he told me that he gets a couple referrals a month for cardiomegaly and never in his career has one been right, so its probably fine. They did the EKG and it showed a small problems. He personally does the echo's and he spent about 30 minutes on it...at first he told me everything was fine b/c he was looking at the front part...he said the Left Ventricle is perfect. Then he noticed a very unlikely problem. He saw an enlargement near the pulmonary vaulve which is very unusual. He possibly saw two problems and mentioned several possiblities. He said we would learn together b/c this was really puzzling.The official impression was 'Right Ventricle output track dialitation consistent (but not diagnostic) with Right Ventricle Dysplasia". He told me would very likely develop rhythm problems whcih may include carrying a portable dephibrilator (that would be the scary part! )...he said if he ever fainted to bring him straight in the office and if they are closed to the ER and have him paged...and he said he just dind't know what to make of the whole thing.Then he asked me when we were seeing Korson again and I told him wasn't supposed to be until February but I was thinking of taking him earlier b/c I feel like everything is so out of control here...he said to get them to do an echo there b/c they would wanna see this. I told him my insurance wouldnt' pay for it and he said...oh it wouldn't matter...this is so wierd they would be priveleged just to see it! So who knows... Korson said the wierdness was that the first part of the diagnosis is a cardiomyopathy consistent with mito and then second part would be something andrew was born with...so we will just have to walk it out.but the part with his heart just stopping, scares the living daylights out of me!debPlease contact mito-owner with any problems or questions.

[Guest guest]

Not an expert! But, Deb -- just one more challenge to face. is in good hands -- your hands, and you are doing everything possible to help him.

Sue Ann

yep, its cardiomyopathy! Help?

Hi all...can some of you heart experts help me out here...

Yesterday we went to the cardiologist and they found a very unusual problems...one our cardio hasn't seen in his 20 years of practice...We started seeing Dr B in August after I talked with the cardiologist at the Conference and he told me that since was born with a cardiomyopathy that it could very likely come back. Dr B actually knew before we did and diagnosed it when he was an infant and when Iwent back to him when was a year old, he discharged us saying that he had outgrown it. The diagnosis was Left-Ventricle Hypotrophy.When was 11 months, he still threw everything but formula up...so we had an upper GI and they found an Abberant Right Subclavian which was wrapped around his trachea and esophogus. A cardiovascular surgeon removed it about a week later and this can never come back. Altho every time I am in there Dr B marvels at it being the Right b/c it is usually the left. ( and the others, is yours right or left?)When we went this august everything was fine...no problems but he wanted to see every six months given he was already prone to heart problems and the risk of cardiomyopathy to mito kids.Then at the end of September, when the pulmonologist did a general xray he said that had a 'generous' heart...I called Dr B and he said that wasn't possible b/c he had just done the echo and it was way better than an xray so I let it go.Then when we were at the ER last week for the extreme fatigue, they did a chest xray to check for pneumonia and told me his heart was enlarged. I relayed the story I just told you and asked them to check again. They did and he had three docs look at it and they all agreed and he told me to follow up with the cariologist, which I did.So we went in yesterday and he told me that he gets a couple referrals a month for cardiomegaly and never in his career has one been right, so its probably fine. They did the EKG and it showed a small problems. He personally does the echo's and he spent about 30 minutes on it...at first he told me everything was fine b/c he was looking at the front part...he said the Left Ventricle is perfect. Then he noticed a very unlikely problem. He saw an enlargement near the pulmonary vaulve which is very unusual. He possibly saw two problems and mentioned several possiblities. He said we would learn together b/c this was really puzzling.The official impression was 'Right Ventricle output track dialitation consistent (but not diagnostic) with Right Ventricle Dysplasia". He told me would very likely develop rhythm problems whcih may include carrying a portable dephibrilator (that would be the scary part! )...he said if he ever fainted to bring him straight in the office and if they are closed to the ER and have him paged...and he said he just dind't know what to make of the whole thing.Then he asked me when we were seeing Korson again and I told him wasn't supposed to be until February but I was thinking of taking him earlier b/c I feel like everything is so out of control here...he said to get them to do an echo there b/c they would wanna see this. I told him my insurance wouldnt' pay for it and he said...oh it wouldn't matter...this is so wierd they would be priveleged just to see it! So who knows... Korson said the wierdness was that the first part of the diagnosis is a cardiomyopathy consistent with mito and then second part would be something andrew was born with...so we will just have to walk it out.but the part with his heart just stopping, scares the living daylights out of me!debPlease contact mito-owner with any problems or questions.

[Guest guest]

Deb,

When I found out Aspyn had cardiomyopothy..this was before we knew she had mito, I found a website at http://www.hcma-heart.com the owner of the site's name is , she has HCM and was very helpful in explaining to me what to expect, and gave it to me in a way I could understand. It might be a good idea to check out her site and maybe e-mail or add a message to the mesaage board and see if they could help you. My thoughts and prayers are with you and your family!!!~Wayne and Block~

~Daddy and Mommy of Aspyn Remar~

Unknown Mitochondrial Disease, Cardiomyopothy, And Lactic Acidosis

~November 14, 2001 to July 15, 2002~

Please visit Aspyn at www.aspynblock.com

>From: VisibleWorship@... >Reply-To: Mito >To: mito >Subject: yep, its cardiomyopathy! Help? >Date: Wed, 11 Dec 2002 09:01:47 EST >MIME-Version: 1.0 >Received: from n21.grp.scd.yahoo.com ([66.218.66.77]) by mc9-f39.bay6.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Wed, 11 Dec 2002 06:03:43 -0800 >Received: from [66.218.66.96] by n21.grp.scd.yahoo.com with NNFMP; 11 Dec 2002 14:01:56 -0000 >Received: (EGP: mail-8_2_3_0); 11 Dec 2002 14:01:54 -0000 >Received: (qmail 80469 invoked from network); 11 Dec 2002 14:01:53 -0000 >Received: from unknown (66.218.66.216) by m13.grp.scd.yahoo.com with QMQP; 11 Dec 2002 14:01:53 -0000 >Received: from unknown (HELO imo-d03.mx.aol.com) (205.188.157.35) by mta1.grp.scd.yahoo.com with SMTP; 11 Dec 2002 14:01:53 -0000 >Received: from VisibleWorship@... imo-d03.mx.aol.com (mail_out_v34.13.) id r.d0.315ba998 (17377) for ; Wed, 11 Dec 2002 09:01:48 -0500 (EST) >X-eGroups-Return: sentto-104439-25142-1039615315-stacynwayne=hotmail.com@... >X-Sender: VisibleWorship@... >X-Apparently-To: mito >Message-ID:

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>Return-Path: sentto-104439-25142-1039615315-stacynwayne=hotmail.com@... >X-OriginalArrivalTime: 11 Dec 2002 14:03:43.0662 (UTC) FILETIME=[1D8C4CE0:01C2A11E] > >Hi all... > >can some of you heart experts help me out here... > > > Yesterday we went to the cardiologist and they found a very unusual > > problems...one our cardio hasn't seen in his 20 years of practice... > > > > We started seeing Dr B in August after I talked with the cardiologist at > > the Conference and he told me that since was born with a > > cardiomyopathy that it could very likely come back. Dr B actually knew > > before we did and diagnosed it when he was an infant and when Iwent > > back to him when was a year old, he discharged us saying that he had > > outgrown it. The diagnosis was Left-Ventricle Hypotrophy. > > > > When was 11 months, he still threw everything but formula up...so we > > had an upper GI and they found an Abberant Right Subclavian which was > > wrapped around his trachea and esophogus. A cardiovascular surgeon removed > > it about a week later and this can never come back. Altho every time I am > > in there Dr B marvels at it being the Right b/c it is usually the left. > > ( and the others, is yours right or left?) > > > > When we went this august everything was fine...no problems but he wanted to > > see every six months given he was already prone to heart problems > > and the risk of cardiomyopathy to mito kids. > > > > Then at the end of September, when the pulmonologist did a general xray he > > said that had a 'generous' heart...I called Dr B and he said that > > wasn't possible b/c he had just done the echo and it was way better than an > > xray so I let it go. > > > > Then when we were at the ER last week for the extreme fatigue, they did a > > chest xray to check for pneumonia and told me his heart was enlarged. I > > relayed the story I just told you and asked them to check again. They did > > and he had three docs look at it and they all agreed and he told me to > > follow up with the cariologist, which I did. > > > > So we went in yesterday and he told me that he gets a couple referrals a > > month for cardiomegaly and never in his career has one been right, so its > > probably fine. They did the EKG and it showed a small problems. He > > personally does the echo's and he spent about 30 minutes on it...at first > > he told me everything was fine b/c he was looking at the front part...he > > said the Left Ventricle is perfect. Then he noticed a very unlikely > > problem. He saw an enlargement near the pulmonary vaulve which is very > > unusual. He possibly saw two problems and mentioned several possiblities. > > He said we would learn together b/c this was really puzzling. > > > > The official impression was 'Right Ventricle output track dialitation > > consistent (but not diagnostic) with Right Ventricle Dysplasia". He told > > me would very likely develop rhythm problems whcih may include > > carrying a portable dephibrilator (that would be the scary part! )...he > > said if he ever fainted to bring him straight in the office and if they are > > closed to the ER and have him paged...and he said he just dind't know what > > to make of the whole thing. > > > > Then he asked me when we were seeing Korson again and I told him wasn't > > supposed to be until February but I was thinking of taking him earlier b/c > > I feel like everything is so out of control here...he said to get them to > > do an echo there b/c they would wanna see this. I told him my insurance > > wouldnt' pay for it and he said...oh it wouldn't matter...this is so wierd > > they would be priveleged just to see it! So who knows... Korson said the > > wierdness was that the first part of the diagnosis is a cardiomyopathy > > consistent with mito and then second part would be something andrew was > > born with...so we will just have to walk it out. > > > > but the part with his heart just stopping, scares the living daylights out > > of me! > > > > >deb ><< message5.txt >> MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*.