THis forum is for us all to be able to talk about or leave a message about whatever we want. Whether it's heart related or
just to leave a brief message. Just take a minute and say Hi. We wold love to hear from you. Also if you have any questions I
will try my best to give or get the answer for you. :)
i'm new at this
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Hello all im 24 and reciently had a beautiful baby boy the following morning i went into CHF.i keep telling myself why do i have this i am way to young.
Posted on Oct 2, 2003, 7:58 PM from IP address 198.81.26.142
This board is closed. I am not sure why it is still accepting messages. I know a few people are posting here, but the board has moved to
http:/www.heart-help.net
You will find many knowledgable people there that can answer most of the questions you have.
Deb
Posted on Oct 6, 2003, 8:49 AM from IP address 69.47.158.105
Dear Jamie
You do not have to feel sorry for yourself. At times life challenges one to the extreme. Success come only to those who are prepared to stand up and fight it out. CHF today is a very treatable disease. By no means is it a curse of death, so dont have to worry unnecessarily. You probably have cardiomyopathy that is idiopathic in nature (no known cause). It often happens following childbirth and generally reverses itself within 9-12 months. My brother was diagnosed with CHF last year. A year has passed and he is doing great. The most important thing is to take excellent care of your self.
The age factor is on your side and that helps. This is what you do:
Take your medications regularly
Do not take salt or caffeine
Totally avoid fatty foods
Get on a moderate exercise regimen after consulting your doctor (power walking is great)
Be happy and cheerful
Trust me, You will only get better.
God Bless
Tara
Posted on Nov 14, 2003, 1:22 PM from IP address 206.176.21.2
Don't worry and doubt that you have something uncurable. On reading this thread I found about a 5 year old baby suffering. this is the thread i am referring to: http://www.network54.com/Forum/31466/message/1236926058/Re-+daughter+5+years+old+with+dialated+cardiomyopathy
You should have very positive thoughts and emotions. Things will surely get better. You got to believe that Tomorrow will surely be better than today! And it will be! God Bless You Dear!
You will find a whole complete websie with all the info you want and what you don't find we will find for you.
Frank....so glad to hear from you. Did you lose the new address ? Please ya;ll....come to the new board as I can't promise how much longer this one is going to remain up. It's calle Heart-help. Most of us there have cardiomyopthy and CHF. I would just hate to see you pop on one day to no board so please come check out the new forum. THere is a lot more info there and it was bigger then this is why I moved it. THe websie got bigger then I had thought I would make it. lol We look forward to seeing you all there I hope.
Hugs to all.
Ginger
Hugs and prayers and lot's of love, G.
Posted on Oct 1, 2003, 4:53 PM from IP address 209.165.27.29
Cardio-Plus (purchased through a chiropractor) prevents me from having very annoying heart palpitations. Coenzyme CQ10 is good for the heart and I take 50 mg a day (more might be better according to what I've read). I take a beta blocker and ACE Inhibitor as well.
Posted on Sep 15, 2004, 6:23 PM from IP address 65.54.98.140
hi,
sorry to hear about your wifes condition.I had DCM too.Recovered very fast. I would suggest you to let her do some isometric exercises, very light to start with. Try strengthning her forearms by doing wrist curls.If she improves her strength in a few days on her forearms, she can start with a light weight bicep curls,with good number of repititions.Stop doing these exercises if there is dyspnea. If she is successful in graduating to newer levels of isometric exercises and improving strength, it will show in her EF. You can experiment by exercising all body parts, but i suggest her not to try any squats or climbing too many stairs until her strength really improves remarkably.You will find that her strength in her arms is equal to the strength in her heart.Also try some yoga and breathing exercises( called pranayama) for 10-15 min everyday. Have a glass of carrot juice in the night before bedtime and some garlic juice in the morning.She should continue her medicines as usual,such as aceinhibitors, beta blockers etc.When there is breathlessness , plesase ask her not to panic, instead sit upright and face it while trying to talk and forget.A lot of breathlessness is contributed by stress and autonomic dysfunction called dysautonomia which is generally faced by most patients with DCM.I am sure you can fight it out .
let me know if this is helping.
ALL THE BEST. BELIEVE THAT YOU CAN BE ALLRIGHT AND DONT LOSE HOPE.
SUDHEER
Posted on Oct 31, 2004, 1:53 AM from IP address 61.2.74.111
Help is there anyone out there that has had this surgery to repair this. My mother needs to speak with you. She won't do anything beacuse she is afraid and her Dr.'s won't help. Doesn't anyone survive this procedure?
Posted on Sep 10, 2003, 9:32 AM from IP address 66.167.135.244
hi everyone!
i finally got to a computer in the library. i got my new heart may 18th. im walking 2 miles, lifting weights and riding my new bike. im also spending a little time with the kids. i had my first bought of rejection 2 weeks ago. it was a grade 3. after 6 biopsies of 0 rejection the 7th one was a bummer. im on prograf. its no fun. the meds alone will kill you.im also on pregnisone. another fun drug. but i cant complain im here to complain. miss you all.
love
frank
Posted on Aug 28, 2003, 11:09 AM from IP address 205.232.136.111
I am a 46 year old male who was diagnosed in july of last year with IDCM. I had been an active and healty peson up to that point. My EF was 28 % in July of last year and 30 % in October of that same year. I have been on many meds for the last year and done well. I saw my Doc in August of this year and my EF was 55% on a TEE. He was vauge about how this might happen and what it all might mean. i feel that I am healing. I had a chronic viral URI ofr six months piror to all of this happening which i feel was the causitive factor. Anyone with information related to what percentage of people recover from this i would sure like to know and have not found it in my own research on the net. I know that i am GRATEFUL and that i concider this to be a real miracle. Thanks for your help. I am also a nurse by trade.
Posted on Aug 25, 2003, 4:36 PM from IP address 68.8.244.40
That is great news and gives much hope. I am also interested to know about DCM recovery statistics.
I had an episode of CHF nearly one year ago that eas nearly fatal. In the first three months after being discharged from the hospital, I felt like I was making very good progress. Now I'm not so sure. Had a rough Summer and Fall. It's a daily struggle.
Your message was very encouraging though. Thanks.
sincerely,
Dennis Mahagin
Posted on Dec 15, 2003, 1:16 PM from IP address 205.188.209.74
I am 28 years old and have cardiomyopathy. I've only known since April 20th of this year I was also 7 1/2 months pregnant. My baby was delivered 10 1/2 weeks early and 5 days later I had an ICD(pacer and defib.) implanted. My echo then showed 20-25% now three months later it shows 15-20%. They have changed my Toprol to Coreg. Just wondering if anyone has the same thing or knows of a better treatment.
Thanks, Tara
Posted on Aug 19, 2003, 4:35 PM from IP address 12.14.227.5
Hi Tara,
I would suggest that you do some research on complementary therapies, nutritional in particular. Coenzyme Q10 has been researched extensively by Dr. Peter Langsjoen at the East Texas Medical Center and several other physicians. Just make sure you use a pharmaceutical grade product. Also, you don't specify what type of cardiomyopathy you have but it does matter. If you have an idiopathic dilated form check my post on July 30, 2003. I also had cardiomyopathy associated with toxemia with the birth of my last (and I do mean last!) child. I think my post about that was somewhere around page 15 - it would have been in 2001.
Good luck to you and please let me know if I can help you in any way.
Vickie Barts, RN
Posted on Aug 24, 2003, 11:47 AM from IP address 205.188.209.46
tara,
im sorry about your illness. i was in your exact place in 95. coreg should help. but if it does not try calling dr. alan gass of mt sinai hospital in ny.it is worth your time to see him. nitracore is another drug and also dobutamine. they increase heart function but they can only be used through an iv. you can also find out about ablation from your ep dr. good luck and hope to here from you soon.
frank
Posted on Aug 28, 2003, 11:14 AM from IP address 205.232.136.111
Sorry to hear of your cardiomyopathy.
Congratulations on the birth of your baby.
A boy or Girl?
Our cardiomyopathy experience relates to our almost 8 year old daughter Paxton being diagnosed with Restrictive C.M following C.H.F in May this year.
We researched the various forms of cardiomyopathy to gain an understanding and the treatment options.
A good starting place we found to understand the various forms was.
www.heartcentreonline.com
and
www.med.umich.edu
Links and your search engine will provide you all manner of sites.
To understand treatment options.
In addition to Paxtons usual meds of Warafrin 1mg daily Frusemide(Lasix)4mls daily and spironolactone 5mls twice daily.
We researched for published literature in medical Jnls.
We used Entrez-PubMed for our search.
We were able to narrow our focus to coenzume Q10 as researched over quite some time by Dr P Langsjoen.
Refer abstract: Int J Tissue React.1990:12(3):169-71.
A six year clinical study of therapy of cardiomyopathy with coenzume Q10.
That may be a useful place for you to start.
In addition of interest to us was research done with long chain fatty acids N3 and N6. (as in EPA in omega 3 fish oil.) In particular that reported from France in 1994.
With regard to control of ventricular arrhythmia and in lessening impact of muscle damage following myocadrial infarction.
We posted on this board 11 July seeking experience of others with Q10.
We were fortunate to recieve amoungst the may replies
one from Vickie Barts.
Who I see has also responed to yours.
Vickie has a tremendous resourse of experience which may have relevance to your case.
We posted an update this board 28 July.
We have been able to make direct contact with Dr Langsjoen who has been most helpful in sharing his cardiomyopathy research.
In addition to Paxtons usual meds we have her on 100mgs Q10 twice daily with food and 2.5gms enhansed omega 3. As in coromega (see www.coromega.com)
WE have found significent improvement with Paxton since we commenced this programme.
Good luck with your research and until we speak agian:
Enjoy the beauty of the sunrise and sunsets and the power of sharing in experiences of others
From New Zealand
Noel Desiree and Paxton.
Posted on Aug 31, 2003, 6:39 PM from IP address 203.98.50.22
I have been on Coreg for quite sometime. My Doctor was very excited to see the results and improvement of the ejection refractor on my echo-cardiogram. And I heard him say, "well that Coreg is really working".
There are other things I think you may want to consider adding to your regime, and do some personal research on them, one is CoQ10, an over the counter vitamin, go on the web and you will see many articles on how this helps heart patients. Also vitamin E, and calcium along with magnesieum help the heart to recover. I am no expert, but I have had some good results. And I hope you do as well.
I think one thing I would want to ask is, are you over weight, if you are losing weight will make a huge impact on your recovery, and will also reduce the stress on your heart, in so many ways. I recently have very good success with the Atkins diet and have lost 50lbs, and my Doc has taken me off a few medications, which I have to tell you makes me feel really pretty good. Okay good luck hope all is well with you, and hope this was not to long of an explination.
Posted on Sep 30, 2003, 9:20 AM from IP address 66.25.222.163
This site has moved. If you're serious about wanting support join us here http://www.heart-help.net/
If you want to post here and have no one answer you then feel free!
Jill
PS I am really a nice person!
Posted on Aug 4, 2003, 10:54 AM from IP address 216.203.108.66
We posted 11 July "Restrictive Cardiomyopathy and Q10"
We spoke of our challenge with our seven year old daughter Paxton ,who was diagnosed in May this year with Restrictive Cardiomyopathy (RCM) following CHF and pericardial drain.
Thank you everyone who responded. You were great.
Thank you too for your thoughts and good wishes.
We understand not everyone has had the sucess they had hoped, our good wishes go out to you.
A special thank you to Vickie Speer Barts.
Vickie has posted previously on this board. We found Vickie a great resourse who has had some tremendous sucess.
We spent 3 weeks non stop researching CHF /Cardiomyopathies /options which lead us to Q10.
Our goal was to obtain the best possible understanding for ourselves. Not just of the condition but more importantly for us was being able to call on the resourses of as may people as we could ,through the net. For us thats from the bottom of the world in New Zealand.
The network on which you are reading this has been a tremendous help. Leading us to many other extremely useful sites for research.
Its been a little over 3 weeks now since we started Paxton on Q10. 100mgs twice daily with food.(in addition to her regular Meds of Warfarin 1mgs Frusemide 20mgs Spironolactone 25mgs)
We made the Q10 decision ourselves based on our understanding of its usefulness reported in published research by various cardiologists. ( even double blind studies) Including that done over quite some time by Dr Peter H Langsjoen M.D. FACC.
Our own cardiologists before they are able to endorse Q10 are comming to terms with the published research that we were able to supply them.
We felt were unable to wait their endorsement.
waiting became unacceptable to us based on the comfort we obtained for ourselves from our own research. Our comfort is such that not only Paxton but we also, are taking Q10.
It is early days yet.We live each day as it comes and thank god for it.
But what a difference Q10 has made.
Paxton has increased her exercise tolerance being able to walk now 300 mts or so.Previously walking across the road was a challenge. She is now back at school part time, and is singing and humming those songs that happy kids do.
Something that we have not heard for along time.
We were able to establish pre Q10. Cardiomyopathy specific stats as a benchmark . We are not due for follow up with cardiologist and echo's for a couple of months, It will be interesting to compare stats.
We will update on progress when those stats are to hand.
In the mean time, we felt we should post this to encourage others. Not just to do the research for you own specific condition using this site as a launch platform. But,with that research to make informed decisions for yourself and to take action on the options you have for your own situation.
We discovered through the net there are choices that could be considered cutting edge . This has allowed us to speak freely with our cardiologists and with the ability to communicate on equal terms.
Should a consequence of RCM cause a sudden end to our quest.
We will always be thankful that through the help of many people.
You ,your god and Q10 have helped us and Paxton to see more sun rises and sunsets together.
Until we post again.
Enjoy the power of knowledge from other people,and choices that gives you.
With much appreciation.
Noel Desiree and Paxton
In Beautiful New Zealand.
Posted on Jul 28, 2003, 11:54 PM from IP address 203.97.2.243
I know this is for people with this condition to ask each other questions, but my dad has been diagnosed with Congestive Heart Failure. He has been very ill and had gone through surgery about a month ago to have his main valve replaced and it didn't take. So now his prognosis is very poor and we have just been recently told by doctors that his heart and lungs is hardening. He was taken to the emergnecy room about a week ago and had full cardiac arrest and is doing so poorly. I guess i just need to know where i can talk to a support group who is losing a parent to this. My heart is breaking so bad i can hardly stand it. Please if anyone knows please email me (dodsenj@earthlink.net). Also could you say a prayer for my dad his name is Erwin. Thanks
Posted on Jul 26, 2003, 7:53 PM from IP address 63.190.81.152
My brother in law has end stage CHF and my niece, Ellen-age 28 is taking care of him at home. She has a 7 year old girl and a mom that pops in and out but isn't reliable. She might be a good person to share support with since she could appreciate someone to talk to. Or you could talk with me. I am 48 and am trying to understand the road ahead.
Ellen's phone 415-724-5667
Cindy's 707-823-7401
Posted on Aug 21, 2003, 8:52 PM from IP address 63.183.41.165
