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I am maintaining this page, but have no personal experience with DCM. This page can only be of service if you readers get in touch with each other or post public responses to messages. Please be willing to share your experiences. If you discover any errors -- of fact, typing, or html -- please let me know as soon as possible. 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 receipt, BB#001 being the first. SUGGESTION: Check the Guest Book for very recent messages which may have not yet been transferred to the Bulletin Board. -- Seth Sicroff, Webmaster

(BB#055) Peripartum Cardiomyopathy

I was diagnosed with this disease after going into congestive heart failure 5 days after my daughter's birth. There is so little known about this disease,or even published for that matter, it's frustrating. It's been 5 months now, and my heart has only improved a little bit, being at an ef of 18% at the beginning and at 25% now. I have so many qustions and don't know where to ask them, or if they can even be answered, anyone with info please contact me, Hansonfoxi@aol.com. I'm 31 and live in Washington State. Thanks for any support.

Brenda Hanson :o)

Hansonfoxi@aol.com

Received: Jan. 23, 1999

(BB#054) Perplexed.

I just found your website, and I have peripartum cardiomyopathy, I would love any info found on this disease... It amazes me how many women have this and so little info on it. Its frustrating! How do I find your guest book or post on your board??
Thanks,

Brenda Hanson :o)

Hansonfoxi@aol.com

Received: Jan. 22, 1999

(BB#053) More chat times...

Friends: There is a chat time for this evening, January, 16, 1999, at 9:00 p.m. I hope many of you can make it. Also, for next week, I will be online on Wednesday, January 20, 1999, at 9:00 a.m. EST, and Thursday, January 21, 10:00 p.m. EST. Please list other times that may be convenient for you, as others may be able to hook up. Sincerely,

Lydia Campbell

campbells@voyager.net

Received: Jan. 16, 1999

(BB#052)

Chat, cont'd

We will be trying to chat again on Saturday, January 16, 1999 at 9:00 p.m. Please keep in mind the Friday, January 15, 1999 date at 9:00 a.m. Please, if any one would like to suggest some other times please post them. I will be adding some new times for next week.

Lydia Campbell

campbells@voyager.net

Received: Jan. 13, 1999

(BB#051) Chat Alert!!!

I will check the chat room on the following dates and times if any one is interested in talking:

January 12, 1999 9:00 a.m. EST January 13, 1999 9:00 a.m. EST January 15, 1999 9:00 a.m. EST

If some one would like to suggest other times, post it so we can try to hook up. If you are out of EST zone and this is too early, let me know, or suggest some evening times (after 9:30 p.m. EST)

Lydia Campbell

campbells@voyager.net

Received: Jan. 7, 1999

Uh... About Tuesday... Friends: I cannot make the January 12, 1999, 9:00 a.m. chat due to an unexpected doctor appointment. I will be at the room on the other two dates. I'm sorry for this inconvenience. Talk to you soon Lydia Campbell campbells@voyager.net Received: Jan. 11, 1999

(BB#050) Familial DCM

My brother was diagnosed at 21 years of age with what we thought was viral DCM. He died at age 39. Since his death, the following family members have been diagnosed with what the doctors are now calling familial DCM.

Sister, 32, EF originally 38%, now 60% Sister, 34, EF originally 40%, waiting for current results from 12-30-98. Brother 42, EF originally 12%, now ?, (don't know current EF, but is improving) Father, 64, EF originally 12%, now ?, (improved slightly, but stable)

I'm currently on lasix, vasotec, potassium, and have started my own regimen of exercise, diet and vitamin supplements. While my DCM is in the early stages compared to my father and brother, I feel I have the ability to live a long and "healthy" life. Since my brothers death, many new drugs and therapies are being discovered and used. My sister was told our kind of DCM would stay the same or more likely get worse. Well, you have seen her results. My brother was originally going to be a

Lydia Campbell

campbells@voyager.net

Received: Jan. 5, 1999

(BB#049) Peripartum Cardiomyopathy

Hello, I was just diagnosed with this disease three days after my c-section delivery of my son. I am 27 and went into congestive heart failure with sever swelling of my legs and face. I also had the fluid in my lungs. My echo showed my heart function at 40% and my second one week later showed 45%. I am going to get another next month. I need to talk to people who have this same situation. I dont know much about it. Please email me if you want to chat.

Jennifer

JRobi87102@aol.com

Received: Jan. 3, 1999

(BB#048) Big Heart

My husband, 64 yrs old, just was diagnosed with DCM. He has an EF of 25%. We are still in the numb stage, trying to learn all we can about what has happened to him, what is happening to him, and what will happen to him. He is on the typical heart medications. His cardiologist says my husband has the biggest heart he has ever seen. Good to find this spot. Interestly his niece was diagnosed with the same problem last April. Her EF was 8%. She now has it up to 18%. Keep the information flowing. Thanks.

Papa

taylorcaro@aol.com

Received: Dec. 17, 1998

(BB#047) Stress-related?

I have been diagnosed with cardiomyopathy. I just went in for a MUGA scan yesterday and my ER is 31% which is 9% lower than when I had one done last January. I have been on Coreg and Monopril for about a year.

I am interested in any information anyone has about this disease and treatment options. I work in a very stressful position and am considering taking a leave or somehow trying to reduce the stress. My doctor has never admitted any relationship between stress and this disease. But I can't help wondering . . .

Chuck Ney

cney@uidaho.edu
University of Idaho

Received: Dec. 17, 1998

(BB#046) Hereditary???

My Grandma's brother died about 5 years ago of DCM and my grandmother also has it. And, about a month ago, right around Halloween, my 30 year old aunt died of sudden death from the disease just a few months after being told she was improving and could go back to work. All of this scares me so much! Sometimes I feel a flutter in my chest and I'm scared I too have DCM. I'm only 15 years old. Please send me info.

Michelle

gitch65@hotmail.com

Received: Dec. 15, 1998

(BB#046r)

Hereditary DCM: An Authority Responds Michelle, I was asked to respond to your recent message. Unfortunately, there are several genetic conditions which lead to dilated cardiomyopathy. Some of them have other more severe manifestations such as the muscle weakness in muscular dystrophy which is far more advanced than the heart disease, so most affected individuals die from their muscle weakness long before their hearts cause major problems. However, some conditions are less severe, and the heart failure is the most significant problem. Some of us who do research on the heart are very interested in learning what specific problems cause this heart dilation and failure, but very few affected individuals currently have an exact cause. That is, there are about 80,000 different proteins in our body. A mutation or defect of only one of these is probably responsible for the problem in your family members, but we are unlikely to know which one yet. However, only by checking are we likely to know. Given what you have indicated, it seems appropriate to have someone in your family see a cardiologist and geneticist (preferable if they are the same person, but uncommon) and evaluate the entire family. This may allow a more accurate diagnosis and perhaps allow better preventative therapy. I could perhaps help find someone if I knew in what city you are, but I would suggest you discuss this with your parents before divulging such information. I cannot reassure you based on what you have indicated. With testing of the hearts of you, your siblings, your parent (whichever one whose relatives are affected) and all that parent's siblings and aunts and uncles, a clearer picture of the problem can be created. You can start by creating your own family tree showing the relation of those affected and those whose condition is unknown. Edward B. Lankford lankfordlab.med.upenn.edu Received: Dec. 16, 1998

(BB#045) Next DCM Chat

Hi, I would like to chat + exchange e mail with fellow DCM sufferers. Discuss experiences, symptoms, diet, and treatment. Is there any good time for group dialogue??

Felix

felixor@prtc.net

Received: Dec. 14, 1998

(BB#044) Husband's condition - abdominal fluid retention?

My husband had a heart attack July 6, followed by 5 bypass surgery. He has not recuperated well and after several rounds of tests/drs. appts., they say he has enlarged heart/cardiomyopathy. Tomorrow they will do the radionuclide ventriculogram to get a more accurate EF. I guess it's premature to try to determine anything without knowing just where his EF currently is - but I am concerned that they keep saying they "don't know what to make" of some of his symptons. One thing is chronic diarrhea since surgery. They also say he is not retaining fluid - but his abdomen and chest area is significantly larger and I really think it's fluid. The cardiologist doesn't believe it's fluid because his ankles aren't swollen -and it would be "highly unusual" to have the fluid in the abdomen without it being in the ankles. Does anyone know of others that may have had fluid retention in the abdomen without being in the ankles? He has a lo

Janet

dananjan@otherside.comm

Received: Dec. 14, 1998

Janet -- your message in the guestbook was truncated. Please complete it.
Seth (Webmaster)

(BB#043) Hereditary pediatric DCM

Thanks so much for having this web page. I'm Patricia Salmon and my 2 1/2 year old son has DCM. He was diagnosed a year ago. We just found out that he got it from his grandmother. She died in 1993. Up until now I was having a hard time trying to find anything or anyone else who has a child with this disease. Thank You.

Patricia Salmon

THIS1Z4U@aol.com

Received: Dec. 11, 1998

(BB#042) Peripartum cardiomyopathy

My 29 year old daughter was diagnosed with CHF the day after delivery (Oct. 20) of our wonderful grandaughter. Her EF was 22% - she has not had another echo yet and probably won't for another 4 0r 5 months. I'm trying to learn all I can about this condition and would especially like to communicate with others who have experienced this same thing.

Barbara

stonebarbara@netscape.com

Received: Dec. 10, 1998

(BB#041) Fatal dilated cardiomyopathy in baby

Hello, I have just found this site after many searches. My little son, Josiah died two years ago yesterday (7 Dec 96) of dilated cardiomyopathy. He was 6 months and 23 days old. He was very healthy and thriving. He also had cataracts (at 3 months) and had generalized aminoaciduria. It was a great shock that he was even ill, he had never been sick. His initial ejection fraction was 10%. This increased to 15% once he was on the ventilator. He died oafter three weeks in the ICU and several Vtachs.

His story is on the web: http://www.geocities.com/Heartland/Prairie/7193 I would like to hear from others who have had similar things happen...

Mary Morris

josiahsmom@hotmail.com

Received: Dec. 8, 1998

(BB#040) What is next????

Finally, I found a site where can get info on DCM. Two years ago this nightmare began, my life was drastically changed, I realized it was serious after the CVA. Never heard of this disease before. It is so misterious, that even my Cardiologists don't know what causes it. Virus? HBP? Bad Genes?, Who knows? My LVEF went from 21% to 37%. I am 34 y/o. and need support. My question is, What is next???

FELIX ORTIZ

felixor@prtc.ne
San Juan, PR.

Received: Dec. 3, 1998

(BB#039) It touches us all.

My father (51) was diagnosed last year with Cardiomyopathy. He has an E.F. in the 20's. He has retired and is on several medications. I guess like everybody, he has his good days and his bad days. But he is handling this the best of any of us. The one thing my father has learned, and what I can not emphasize enough to you all: It is your disease, you must take charge of treating it. My father has spent countless hours on the phone and writing letters to find out more information on this disease. He would ask his doctors and they would say "I don't know, but I will check and get back to you." It never happens. Don't get me wrong, by father gets excellent medical care. But nobody will take as personal an interest in your condition as you will. Don't take "No" for an answer, especially not "I don't know." My father found out about a new medicine that he brought back to his cardiologist and now his cardiologist has 40 other patients on it. That would not h

Brandy

ClimateControl@worldnet.att.net

Received: Nov. 30, 1998

Brandy-- your message in the guestbook was truncated. Please complete it.
Seth (Webmaster)

(BB#038) What medicine to take?

Dear Sirs,

My brother is having Dilated Cardiomyopathy since last one year with ejection down to 20%, Age 42. I would request you to let me know if you can suggest latest medicine on the same. Presently he is being given "Carnitor" 2-2-2, but the results are not encouraging.

Your early reply will be highly appreciated.We can Fax/E-mail the case papers if required.

Thanking You,

Harsh Tolia (c/o Sanjay Mehta ???)

keschem@bom4.vsnl.net.in

Kesari Chemical Industries

Bombay, India
Received: Nov. 30, 1998

(BB#037) Pediatric DCM

My 5 1/2 year old daughter was diagnosed with DCM 2 weeks ago. It was a huge shock because she was being tested to rule out mitral valve prolapse as a part of a genetic workup. We are awaiting the results of the genetic tests still, she was being tested for fragile X syndrome, which the cardiologist does not believe she has. Her exam and EKG were normal, and the problems only showed up on the echo. Even the Dr. was shocked. Her ejection fraction? was 46%. She is scheduled for a gated blood pool study and a stress echo on 12/9/98. I'd appreciate any help with what all of this means. The dr said he likely will start her on digoxin and an ACE inhibitor. What kinds of side effects are we looking at?

Angi
PVa2128650@aol.com
Received: Nov. 30, 1998

(BB#036) Help! I need a good cardiologist in Monterrey area.

Hi,

Sure glad I found this site, because I have been trying to inform myself what this is about. This past summer I was referred to a cardiologist by my primary Dr. due to a different EKG reading.

Anyway, the cardiologist was angry that my Dr. gave me a copy of his report which listed mild dcm w.ejection fraction of 40. He did not want to discuss the meaning of this, so I am trying to learn. Is it accurate to say that 55 is the norm? I learned this on the web. Please put me in touch w/a site so that I can get a lead on a good cardiologist in my area (Monterey,CA) who will give me a second opinion and explain what it means. I have a long family history of heart disease, and thought I was free of it until last Aug.! I do not have any of the at risk factors other than that history.

Hope you can give me a lead.

Thanks.

Carole
Calilu@aol.com
Received: Nov. 27, 1998

(BB#035) Cardiomyoplasty?

Hello,

This is Charlotte White and I am 26 years old. My mother Ruth Sanders who is 50 years old was diagnosed with this disease 3 weeks ago. I am very concerned because her 2 brothers, aunt, and mother had the same disease and they have all passed away. My mother goes back to the doctor on Nov. 30, 1998 to see the cardiology and we are going to get her transferred to a doctor in Birmingham and see if the surgery that is called cardiomyoplasty can be done. This type of operation is when they take a muscle from your back or leg and teach it to operate as the heart muscles. We are going to go through this with a fine teeth comb and see all possibilities. If you would please email me at work Cwhite@movgal.com and my email address at home is wcwhite@gte.net. I work mostly from 8-5pm(Central). Please advise if you have any suggestions. Please forgive me if I misspelled any words.

GOD BLESS!
Charlotte White
Cwhite@movgal.com
Received: Nov. 24, 1998

(BB#034) Waiting, with dietary supplements, hawthorn berries, CoQ10, and l-carnitine...

I'm so glad I found your site. I'm now on a waiting list for transplantation. I get a call be the surgery was called of because there was a slight blockage in the donors heart. The doctor said that if I were in the hospital and desperate for a heart, they would have used it and did a bypass at the same time. But since I'm home waiting they thought I could wait. I'm thinking about taking dietary supplements, hawthorn berries, CoQ10, and l-carnitine. Have you heard of them? Also, my sister was recently diagnosed with same. Please put me on the email list for any literature.R

MAXX
Don Maxx
DONMAXX@aol.com
Received: Nov. 23, 1998

(BB#033) Share notes?

Glad to have found this board.

I've had a LBB for at least 10 years (43 now) and recently had an adenosine stress test... LVEF ~29% and coronary artery disease a possibility... slightly overweight and high cholesterol... catheterization showed clear arteries and idiopathic DMC. That was friday. Now I am on ace inhibitors and soon to go to beta blockers.

Anyone else out there in roughly similar conditions want to compare notes?

Nathan Meehan
dnmeehan@uprc.com
Received: Nov. 21, 1998

(BB#032) Looking for advice...

I have been diagnosed with dilated cardio., 4 months ago I showed 45% lv, now its 35% lv, the right ventracal is not doing any better. I have as insurance an HMO and VA I am a disabled vet I suffer from migrains and back problems. I have noticed that I am having problems with my kidneys now and then. ???? D Hamilton
dhamilto@sunset.net
Received: Nov. 22, 1998

(BB:#031) Re: Heart to heart chat

when is the next one?
JGracya319@aol.com
Received: Nov. 21, 1998

(BB#030r) Suggest a time!

Really, all you have to do is put a note in the guestbook saying when exactly you'll be on the chatline (use GMT). If you give me a few days warning, I'll spam everyone, letting them know.
Seth Sicroff