Part One
Bulletin Board, Part Two (from newsgroups)
Bulletin Board, Part Three
Bulletin Board, Part Four
Bulletin Board, Part Five
Bulletin Board, Part Six
Bulletin Board, Part Seven
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Note: Messages are displayed with the most recent at the top of the document, except where series of letters and responses are clustered; mauve i.d. numbers refer to order of recent, BB#001 being the first.
- (BB#029) Success story!
- Im a 41 yr old female with dilated cardiomyopathy. I was diagnosed at the end
of my pregnancy last year and went into nearly complete heart failure on the
day of delivery (during the c-secion). Consequently my newborn baby was born
in serious condition and had to be life-flighted to another city. On the day
of delivery, I was at 20 ejection fraction with pulmonary edema when ever I
laid down. My cardiac rehab consisted of a daily dose of digoxin, and
lotension. I started rehab at 4 weeks post partum by attempting to walk down
and back on our block. I thought I would drop dead at any minute for many
weeks but gradually I gained strength and energy. I also, for the first time
in a decade, was able to get on and stick to a diet. Fear is a wonderful
motivator! I lost 40# in 6 months. Now, one year and 4 months later I have
an ejection fraction of 60%, walk a fast paced 3 miles every day (It was the
exersize that strengthed my heart, I'll never ever skip another day of
exersize as long as I live). I am still on Lotension, off the heart meds and
feel totally normal except for the occasional palpatations. My cardiac Dr.
said I doing very very well. I feel like a million bucks.
thanks,
email me if you want, Im a great letter writer!Susique
Susique@aol.com
Received: Nov. 20, 1998 - (BB#028) My friend Melinda
-
Sylviane,
- My friend, Melinda was recently diagnosed with ideopathic DCM. The best guess is she had a virus that went undetected and untreated starting in August last year. She is currently stable and in fairly good health but tires easily.
- She is very interested in contacting a support group to better understand the disease and the long term prospects. She is also visiting Stanford MC in an attempt to get on the transplant list. At present, her good health may prevent her being placed on the list.
- Any information on supports groups especially in the San Jose/ San Francisco area would be greatly appreciated.
Steve L. Pettit
Steve.Pettit@unisys.com
Received: Nov. 20, 1998 - My friend, Melinda was recently diagnosed with ideopathic DCM. The best guess is she had a virus that went undetected and untreated starting in August last year. She is currently stable and in fairly good health but tires easily.
- (BB#027) Baby Ruby
- In my first posting some 3 months ago I told you about my baby daughter Ruby. I thought it was time for an update.
Ruby is now 13 months old. She has DCM affecting her left ventricle. A recent ultrasound showed that her condition was stable but there was no noticeable improvement in her heart muscle.
- We've basically been told that Ruby will either recover as she gets older, keep stable provided medication is continued, or her heart could deteriorate. Her present stability indicates that one of the former two outcomes will occur. Apparently most infants that do recover start to do so with 6 months of diagonosis so the next few months are crucial.
- If anyone has an infant that recovered after the 6 month period I'd be keen to hear from them. Also Ruby has some leakage from aorta to pulmonary artery through a shunt that should have closed at birth. The doctors are talking about operating to correct this when Ruby is stronger. Anyone got any experience of this?
Shaun Forth
S.A.Forth@rmcs.cranfield.ac.uk
Received: Nov. 9, 1998 - We've basically been told that Ruby will either recover as she gets older, keep stable provided medication is continued, or her heart could deteriorate. Her present stability indicates that one of the former two outcomes will occur. Apparently most infants that do recover start to do so with 6 months of diagonosis so the next few months are crucial.
- (BB#026) Dietary Hell
- I have it and it is making my life a living hell.
Where can I find a diet low in sat. fat and low in sodium.
Everything I find that is low in sat. fat is very high in sodium.
Thanks,
Bob
Vitamin001@aol.com
Received: Nov. 8, 1998 - (BB#025) Need information...
- I am doing some research and am looking for some background unofrmation....
How many people suffer from dilated cardiomyopathy a year?
Thanks,
Caroline Newman
Caroline.Newman@mail.trincoll.edu
Received: Nov. 6, 1998 - (BB#024) Fighting back with Coreq
- On Aug 27, 1998 I was hospitalized and the diagnosis
was DCM. I'm 47, married with two children. For someone
who has been healthy their entire life, it's been a
shock. My EF was less than 20%. I've been put on the
regular meds but in addition they added a drug that was
FDA approved in Jan 98 called Coreq. Last Wed. I had
another echo and doppler and my EF was 42%. The
difference has been amazing! If I was unaware of my
condition, I'd be pushing myself thinking I was back to
normal.
- Though I think about it constantly. I'm glad to have found this site. Thanks.
Linda
emup15b@prodigy.com
Received: Oct. 28, 1998 - Though I think about it constantly. I'm glad to have found this site. Thanks.
- (BB#023) Looking for information
- Yesterday, I was reading in the paper, and on the
internet about my friend whom I played basketball with
last year in junior college. It was recently found out
that he had cardiomyopathy, I believe it is DCM.
Because they described it as a weakening of the heart.
I was shocked and felt horrible. So I thought I would
see what this diesease is all about.
Drew Grzella
S_GRZEL1@students.ccis.edu
Received: Oct. 15, 1998 - (BB#022) Doing Better with BEST
-
Hi,
- The BEST program that I am on is up to 100mg twice a day either med or placebo. I feel much better and am scheduled for a complete check up in November. I do know that my EF went from 18% to 26% and I wonder where it is now. I will up-date in November.
- Strength comes with a positive attitude and support.
Al Shorte
shorte@trib.com
Received: Oct. 12, 1998
- (BB#022r) Thanks for the update, AL. (Earlier messages from Al Shorte are posted below (BB#009).
Seth Sicroff - The BEST program that I am on is up to 100mg twice a day either med or placebo. I feel much better and am scheduled for a complete check up in November. I do know that my EF went from 18% to 26% and I wonder where it is now. I will up-date in November.
- (BB#021) Facing transplant
- I was told in April I have cardiomyopathy and I would
need a heart transplant in the next 5 years. That is my
only option. How do you handle news like this? It's been
very depressing for me. I sleep about 18 hours a day
trying to deal with it. Which is not dealing with it at
all. I try to block it out.
Karen
kdailing@ktis.net
Received: Oct. 8, 1998 - (BB#020) How to Chat???
-
help,help,I'm new on internet,I did put a name in a
chatbox on this page but how can I chat again? I haven't
done this before, please help it's very important for
me.
Judith Mundil
poempie@tref.nl
Holland
Received: Sept. 30, 1998 -
(BB#019r)
- Hi, Judith,
I'm not sure what the difficulty is. All you have to do is click on "Chat" and then fill in the blanks -- or at least the one requesting a name (not necessarily your real name). The larger problem is finding someone else on line at the same time. There clearly is a need for more communication. Why don't you post a suggested time for a chat in the guest book? Make sure to use Greenwich Mean Time, or at least identify your time zone.
Seth Sicroff- (BB#018) Familial DCM
- I am 45 and recently diagnosed. My concern is that my daughter who is 16 has SOB and tachycardia with minimal exertion. Her pulmonary and cardiac tests have been negative but it bothers me that at that age I also had those symptoms. Does she have to wait for damage to be diagnosed or is there some additional test that is definitive now ?
B Potter
katpot79@aol.com
Received: Sept. 11, 1998- (BB#017) Mom's got it.
- Hi,
- My mom was just dx'd with dilated cardiomyopathy secondary to alcohol abuse. Would like to hear from anyone else who is experiencing this with a family member. Her EJ is <20%. She also has copd, 65 years old.
Betty
Bettbet@aol.com
Received: Sept. 18, 1998- (BB#016) 12-year-old athlete suddenly struck down
- My 12 year old son died while swimming in a swim meet. His autopsy stated cardiac arrythmia due to consequences of dilated cardiomyopathy. He had no symptons and was a very healthy non-obese athlete. This has been such a shock to us. Is there anyone out there who has experienced the same thing? We are desperately trying to find out more about this. This happened on July 14, 1998. There were no symptons or warning signs. This happened during and in front of his 8-year old sister and the rest of his teammates. Thank you for any responses and help.
Melanie
melvitta@hotmail.com
Received: Sept. 4, 1998- (BB#015) Let's get in touch!
- I just found your website and have read through many of the bulletin board messages. I have had DCM for almost 4 years now. I am 40 years old and when diagnosed my EF was 18%. My last EF was 32 % I am to have a muga scan done the end of the month not sure what kind of news that will bring. I try to keep active and keep a happy thought but even after 4 years it is hard not to think about this disease that has invaded my body. I am blessed with a wonderful wife and a 5 year old son that help keep me pushing ahead to make the best of my situation. I would be interested in hearing from other people who have DCM.
Brian Stephenson
1plantman@email.msn.com
Received: Sept. 2, 1998- (BB#014) OK to take migraine medicine?
- I am a 35 year old female with DCM. I was diagnosed with it last year and sent to a transplant clinic. Although I have improved enough not to have a transplant, I still get so discouraged because I can't do anything! Also, is there anyone out there that has taken migraine medicine with DCM? I have severe migraines but my doctor is to scared to try Immotrex or the like on me.
kile wilkins
villian@mail.lig.bellsouth.net
Received: Sept. 1, 1998- (BB#013) In the Family
- I was happy to pull up your Web cite on Cardiomyopathy. I have a very strong family history of this disease and have be Dx with this condition 2 years ago. I worry about my 18 year old niece who really does not know her father died of this disease and that she too has a 50% chance of having it. I have only heard of a few people who have it in their family and I am interested in talking to others who have it in their family too. I could not stop crying when I saw BEACHES and was shocked when I was told it was funny. I did not find it funny at all. No one seemed to think about the woman with CM or know what it was. Thanks for getting the word out regarding this terrible disease.
Ann
ANNKOP@aol.com
Received: Aug. 29, 1998- (BB#012) Pediatric Dilated Cardiomyopathy
- My 11 month old daughter has recently been diagnosed with DCM. She is now out of hospital being treated with Captipril and Digosin for her heart and 2 diuretics spirolactone and frusemide. She is quite frequently sick and I'd be grateful if anyone with an infant and similar problems would get in touch.
Thanks
Shaun Forth
S.A.Forth@rmcs.cranfield.ac.uk
Received: Aug. 29, 1998- (BB#011) Canine Cardiomyopathy
- I have a boxer with cardiomyopathy and I am looking for someone with the same problem that may have any information or suggestions for me.
Tracey
brenda389@aol.com
Received: Aug. 21, 1998- (BB#010) Keep the faith!
- I appreciated my visit to this site! I have DCM diagnosed in 9/97 with an EF at around 22% back then. There are many promising treatments and drug therapies on the horizon for our insidious disease so I urge all of us to hang in there tough! There are also vast immunospressant improvements in the works if a transplant becomes necessary (eg. Rapamune). Peace to all and beat on!
Marty
brenda389@MartinBK@aol.com
Received: Aug. 18, 1998- (BB#009) To Work or Not to Work?
- My name is Al Shorte and I have DCM with EF of 20%. Next week I'll start the BEST program through the DENVER VA. I was told to stop working but can't. I am an electrican. More to follow please reply.
Al Shorte
shorte@trib.com
Received: Aug. 2, 1998- (BB#009r)Hi, Al--
- I'm sorry to hear about your DCM -- I know how shattering it is. At present, I am only managing the Website for my French friend Sylviane, who has been unable to get to an internet hookup for several weeks. In the meantime I will post your letter on the bulletin board, and perhaps you can get in touch with some of the other visitors. Seth Sicroff
- (BB#009b) Follow-up from Al Shorte
- Hi;
- Just a line to tell you all that the BEST program has given me some great hope. I took my first 3mg times two per day last Friday. I have been able to focus and I feel that I will be able to work more. I still get short of breath, but with proper management I feel like I have a real good chance of extending my life into the future.
- This Friday I go up to 6mg times two per day. I will follow up on any results.
- The BEST program is found by Searching Infoseek dilated cardiomyopathy and then an advance search for BEST. Check it out.
Al Shorte
shorte@trib.com
Received: Aug. 12, 1998- (BB#009c) Al Shorte: Looking Up with BEST!
- Here is an update;
- Last Friday I was taken from 25mg twice a day up to 50mg twice per day and I do feel good. I don't know if it is the BEST program or what, but I was able to go up six floors with very little breathing problems. Next week I go to 100mg twice per day and soon there after I will get a full physical to see if there in fact are some good results.
- My doctor is very optimistic about the program and says he has seen some good results even today.
- We just need to keep a good positive outlook and work with that, hope for the best.
- Thank you; Al Shorte
shorte@trib.com
Received: Sept. 12, 1998* * * - (BB#008) 16 Weeks, with cardiomyopathy
- I am 16 weeks old and have been diagnosed with Cardiomyopathy. The doctors tell me that my future is uncertain and my Mummy would appreciate some friendly correspondence from people in the same circumstances.
Laobhaise
Received: July 28, 1998Dear Laobhaise, As far as I can see, you did not leave any contact information in your Guestbook posting. I hope you will get in touch with some of the other people who have left messages here.
Seth Sicroff* * * - (BB#007) Peripartum Cardiomyopathy Support Group? Info on Brethine?
- Sylviane
My wife is twenty-eight and has just had congestive heart failure. The cardiologist believes it is peripartum cardiomyopathy. We are looking for a support group for patients with this disease. We are also wondering if her use of the drug Brethine to prevent premature labor may have led to this condition.
We are very excited about finding your web page.
Ronald and Lily E. LaBoy
relfam1@gte.net,
Tampa Florida.
Received: Friday, July 25, 1998* * * - (BB#006a)Father,46, has DCM
- I found out yesterday that my 46 yr old Father has Dilated Cardiomyopathy. He also found out that he had suffered a mild stroke back in February. I am currently looking for any kind of info I can find on this disease. If you have any info or think you may be able to help me. Please e-mail me back asap. I am anxious to find out everything that I can. My e-mail address is:
Kim Sweeney
kims@vspan.com
Received: Friday, June 5, 1998* * * - (BB#006b)
- Thanks for getting back to me. I don't usually have access to the internet but I did have my friend get me some info which I forwarded to you. It is basic definitions but helps explain what cardiomyopathy is.
- What I am looking for now, is the treatment for dilated cardiomyopathy. I am also interested in finding out if this is an inherited disease because neither one of my Dad's parents had this or a stroke and his Mother is still alive and well at 85 yrs old.
- Right now, the doctors are going to try to control his condition with medication. My fear is that this medication won't do the job and according to some people I have been talking to , a transplant may be needed. This scares me for 2 reasons.
- First my Dad is extremely active , he is a mail carrier and walks about 5 miles a day. He also plays golf and is very active in coaching my younger brother and sister's sports . When I pictured my wedding day, I used to dream about a day that was completely carefree and happy . Now , I am now sure what to do. I do NOT plan on getting married unless my Father is able to walk me down the aisle. Thats why I am in such a rush to find out how to treat this. I do not want my Dad to feel sick or depressed at my wedding. I want him to be able to enjoy the day with my finance and me.
- If you have any info on different methods of treatment, I would appreciate it if you could forward them to me.. I will also forward any new info that I get to you.
- Thanks again.
This is what I got! Hope it helps!
Kim
kims@vspan.com
Received: Monday, June 8, 1998- (BB#005) Familial Cardiomyopathy: Any advice on treatment?
- Hi I was diagnosed with cardiomyopathy 3 years ago. I have a pacemaker fitted and I'm taking no drugs. However the NHS are superb at saying that nothing is wrong now. Would like to hear from fellow suffereres as I'm sure that I'm being overlooked for positive curative measures. My son also has inherited the disease so I'm more worried about his future.
katrin markham
katrin.markham@virgin.ne
Received: Monday, May 25, 1998- (BB#004) Importance of weight control.
- Hi there I have Cardiomyopathy I am overweight by 50 kilos but am doing my best to lose it. I do not drink or smoke. I am doing walking half an hour a day, will increase when I get a bit more fit. I have seen your web page and it has made me realize that i must do something. I am 38 years old married with 2 kids. I weigh 139 kilos...
Michael and Sandra (Australia)
ker@one.net.au
Received: Friday, May 22, 1998- (BB#003)Struck down without warning.
- My brother collapsed hitting his head - requiring brain surgery - but the swelling was so bad, he was declared brain dead. After an autopsy, my 35 year old brother died from dilated cardiomyopathy. This happened Jan 2nd.......just 4 months ago. Let alone dealing with the grief, we never knew he was sick. No signs or symptoms. He did have a slight cough now that we look back. My brother was at the prime of his life and career. This really sucks. We thought he was so healthy. My brother was tall, nice build, worked out......a beautiful man who lost his life to a horrific disease. I realize had he lived through the head injury - he still would have had a terrible life once it would have been diagnosed.........I wish we could have been prepared. We are in total shock.......
Lisa (Whitchurch Lisa-LLW012)
Whitchurch_Lisa-LLW012@cignamerica.mot.com
Received: Wednesday, May 13, 1998- (BB#002) Recent diagnosis. Website. IVIG treatment.
- I am not sure about dilated but, my Cousin and best friend in the World was diagnosed with Cardiomyopathy this week. I read about research on this disorder on web page:
www.aarda.org/research9.html
It seems that 10 patients with this disorder and in need of a Heart transplant, were given high dose injections of immune globulin(IVIG) for up to 6 days. Nine of the ten patients showed improvement up to 17 points in Heart volume after the treatment. 2 years later still doing well.
Any other information is appreciated......Thanks
TLC (TERRY CONSTANCE)
tlc_net@airmail.net
Received: Thursday, May 7, 1998- (BB#001)Relapse. Resources.
- Hi there,
I was diagnosed with DCM in Sept 96 and was on meds for about 1 year. My EF went from about 18% to 54% so my cardiologist removed me from all cardiac meds as of Sept 97 to see how I could manage on my own.
To make a long story short, I was fine for the next 6 months and then 3 weeks ago started getting symptoms which took me to the hospital yesterday and now I'm back on one of my old meds!! There is a definitive, wonderful site dealing with congestive heart failure and dilated cardiomyopathy, moderated by a victim of it himself, Jon. It's at:
http://www.geocities.com/Heartland/Hills/2571
Check it out ... there's also a moderated forum for any and all CHFers and DCMers to post messages to each other as well as a chat session once weekly.
Dallas
countryhearts@geocities.com
Received: Friday, April 24, 1998
- Hi, Judith,