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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.

If you are posting a message in the Guestbook, please be sure that your entire message was transmitted. Many of the messages have been truncated; if yours was partially lost, and you wish to complete it -- please do! -- send us the rest by e-mail; be sure to refer to the date, and bulletin board i.d. number.

SUGGESTION: Check the Guest Book for very recent messages which may have not yet been transferred to the Bulletin Board. 

and ...
      please... 
                  DO NOT WRITE IN ALL CAPS!!!

-- Seth Sicroff, Webmaster


(BB#104) Thank you

I sent this e-mail out last night to many of the postings on your survey respondants. I want to thank you for your web page. It well may accomplish your main goal.
Tim
Time does stop. Not for everyone, not all at once, but on an individual basis. Time stopped for me in mid-October of 1996 when a white coat across a desk rolled the words "heart disease" out as though he were ordering out for lunch. Time stopped and then I heard bits and pieces. Too many "I don't know's" and "we're not sure's" for my liking. Idiopathic - Doctor for we don't know what caused this to happen, followed by Dilated Cardiomyopathy. Then, the "flat tire" analogy (your heart is now like a flat tire, pumping along, but not well). I was 33. I took off my watch shortly thereafter, and have rarely worn one since.

I found the website that listed each of your e-mails just two days ago. I cannot tell you the thrill, and agony, of reading your postings. It is funny how media portrayals and sports figures seem to highlight our disease now and again. "Isn't that what you have," is not my favorite topic at work, as often the rest of the story proves to be tragic. None the less, it may serve to bring this disease into a forum that we can all learn from. I sent in a posting as well to the site, but at the risk of repeating myself, let me tell you a little before I ask about you.

  • I believe some of my "healing" began at an alter in my church. The doctor told me to stay home all weekend, so I did. My friend went to the alter for me and was annointed with oil in New Testament tradition. It is so important for me to maintain a positive outlook on this whole thing. I would not be able to do so without my faith in Jesus. I will not preach, I'll just say He is my reason for success. Enough said.

  • My ejection fraction is in the low 20's. It has basically been unchanged since 1996, which I take as a good thing. My understanding is the transplant list starts at 8%. Does anyone know any different? Have any of you ever had a dramatic change in ejection fraction?

  • My heart is in a constant state of atrial fibrillation, meaning it beats well over 100 times a minute. I perfuse (my pulse) is about 60 bpm. Does anyone else do this?

  • I take a multitude of medications. Lanoxin, captopril, coumadin, lasix, and propronanol. I have found it is also a very good idea to take vitamins. I usually drink a nasty fruit drink to wash this stuff down - "Twister" is the best, but Ocean Spray cranberry and the like work well for me too. It's hard to worry about the pills nasty taste when washed down by a strong juice. Any other "tricks" to these medications out there?

  • I drink water non-stop. I carry a bottle with me and drink every chance I get. About a year after being diagnosed I asked my wife to take me to the ER after eating piece of ham. Many nitro patches later we decided I had reflux, where acid builds in the stomach, rises in the throat, and feels like heartburn. Prilosac, Mylanta, and tilting my bed up at night keep this from being a problem now, but it sure scared me. (Haven't had ham since, nor carbonated soda, but I do dream about them).

  • I have to get my rest. It is a big key. I have to remain active - I play softball three games a week, soccer when in season, and love to ice skate. My Doctor recently said to me, "With all you do, it's hard to believe you're sick." I just nodded. After an uncomfortable pause he added, "you are sick, though." I'm not sure who's in denial now.

  • I am convinced he does not know any better, speaking of my Doctor. I did fire that initial idiot cardiologist of mine - he had a poor bedside manner and with him telling me there was nothing to be done, I thought he could have at least said THAT nicely. But as for my primary physician, I initially thought he was holding out on me. I have come to believe he just doesn't know.

I am curious if anyone has seen any research on this disease. Well, I have a lot more I want to know and I'm sure a lot more to say. Let me close by saying if you got this and did not want to, I apologize. If you do not want to hear such things again, please let me know so I can properly "delete" you from my e-mail. For those of you who are left, I hope to learn through you and am more than willing to share. I doubt I could be asked an offensive question, or one too small a detail to address in my personal experience.
Hoping to hear from you,
Tim
Timothy Kalman
Kalmans@worldnet.att.net
Received: July 30, 1999

(BB#103) a great link

don't know if you have it, but this is excellent:
http://www.postgradmed.com/issues/1997/01_97/sorr2.htm
D. N. Meehan
NathanMeehan@upr.com
Received: July 20, 1999

(BB#102) What about children?

hello, my name is valicia starks. i have a 13 year old son who has dialated cardiomyopathy. he was diagnosed several years ago. i have tryed to get as much information as possible on the disease. i have some information, but it all pertains to adults, not children. please if you have any information regarding children with dialated cardiomyopathy i would like to read it.
Thank you

valicia starks
vstarks@yahoo.com
Received: July 11, 1999

(BB#101) post partum dilated cardiomyopathy

To All Readers.
I have searched through this site and found it helpful so far.
My daughter, Michelle aged 24 years, gave birth to a daughter seven days ago. Within 24 hours she was tasken ill and transfered into the Intensive Care Unit. She is now out of this unit and on a cardiac ward.
She has been diagnosed with dilated cardiomyopathy.
I had never heard of it before and so began researching what I could. I think that I now understand the illness and possible treatments.
I would like to be in contact with someone who has or has had this illness or someone very close to a sufferer.
I would like to know what she can expect to go through in the near and also the distant future.
At the moment she does not know the full extent of what she has got and the implications to her and her new daughter. She will be told in the next couple of days.
At present she has an E.F. of 15 - 20.
I hope to hear from someone soon.
Thank you

Andi
jencaz@aol.com
Nr London England 10
Received: July 10, 1999

(BB#100) Thank you

Hello to all. I posted a letter just a few short weeks ago and I was overjoyed by the responses I got. I would like to thank everyone who has heart enough to repond to my letter and my worries. It means the so much to me and has helped me through a very hard time.
Thank you
Leigh Anne
tdfore@att.net
Received: July 9, 1999

Dear Leigh Anne,

Thanks for your note. After posting more than a hundred messages, including the survey responses, I have gotten only about two or three indications that some communication is going on out there. Perhaps you will think it uncharitable, but I do get extremely irritated at the apparent passivity of the readers of this page. Why don't you answer each other's notes in public? Why don't you suggest chat times? (You can use the guestbook, or send a copy of personal e-mail to this page.) I guess it's my fault for not making this page more interactive.

Anyway, as I have said, I do have to withdraw from this work. In a few weeks I will be leaving for research in the Himalayas; there is no Internet there, and I won't be able to post anything until January at the earliest. Therefore it would be best to use the guestbook rather than e-mail me. And eventually if someone doesn't step forward to take over the page, I will have to just set it adrift.

I'm really sorry.

Yours,
Seth

(BB#099) Support Groups in Iowa?

My wife, who is 33, has just been diagnosed with DCM. She seemed too young to have heart disease but after reading through the bulletin boards here I find that it affects people of all ages. I would like some information on support groups. If anyone out there has the information that we are looking for feel free to e-mail me. We live in Northwest Iowa and would really appreciate any information about DCM and about support groups in our area. My heart goes out to everybody that has been touched by this disease.
Pat Mason
masonp@ilcc.cc.ia.us
Received: July 6, 1999

(BB#098) Got Chats?

Hiya....I just happened to run across your website. It is great ! :) I have DCM and have had for about 15 months. I also have a website for it. www.laker.net/mystery. Are you giving up your site ? I saw something about someone to take it over I thought. I hope you keep it going..its a good thing. Do you have any scheduled chats ?? I host chat 3 times a week at Jon's. Just curious !!
Hugs, Ginger Criscuolo
ICQ#8868822
Smile....God loves you ! :)
Leigh Anne
www.laker.net/mystery
Received: July 4, 1999

(BB#097) What lies ahead?

Dear whoever it may concern,
I need help. My best friend and boyfriend has dilated cardiomyopathy. I've researched it so much hoping to find some answers as what lies ahead for us in our relationship as far as his health goes. It seems like he's tired alot and gets dizzy very easily. If anyone has any info, I would greatly appreciate it.
Thank you
Leigh Anne
tdfore@att.net
Received: June 24, 1999

(BB#096) Mom's very recent diagnosis

My mom has just been diagnosed with cardiomyopathy. She has an EF of 27%. After a heart catherization this AM, they told her she would not be able to handle open heart surgery. They will put her on meds and diet and, if they don't work, she will need a heart transplant. Also, he mentioned that it may be hereditary.
My questions: 1) How effective are the meds? 2) What is the quality of life REALLY like for someone with cardiomyopathy? 3) What procedures should my family members follow regarding getting testing for this disease?
Candace
cdn@gateway.net
Received: June 2, 1999

(BB#095) Post Partum Cardiomyopathy???

I had a beautiful baby girl on the 18th of May. The day i was released from the hospital, i got home and was having trouble breathing. Went to the ER and they dignosed me with Post Partum Cardiomyopathy, said it was caused due to strain on my heart for the pregnancy.
I am 32 years old, and was told i should never try and have more kids because of this disease. Anyway i am pretty scared about the whole thing. When I realized just how close Ashlynn and i came to death, i just could not believe it. I have never been in the hospital for anything, and hae spent more time there recently then i ever want to again.
Anyway i am loolking for someone to talk to about this disease, so i can hopefully understand it better and find out ways to recover. My doctors say 50% chance it will go away with proper treatment. The problem is I was told it is a very rare thng and not much is known about it or how to treat it. So please someone, anyone get in touch with me. I could really [TRUNCATED]
Lori Smith
Psylocke_RULZ@yahoo.com
Received: May 31, 1999

(BB#094) What are the odds?

I brought my wife to the hospital complaining of chest and stomache pains. She felt very clammy and began vomitting. I signed her in as having a heart attack. Vickie was 34 years old. She was the mother of three children and a wonderful wife. She was misdiagnosed and very poorly cared for at the hospital. As a result of the treatment she did/did not receive, she had died in the hospital a few days later. The autopsy said she died of acute myocarditis associated with acute dialated cardiomyopathy with presence of mural thrombi in right ventricle and right atrium. My question is: if she was properly diagnosed and cared for would she have a 51% chance of survival? Do I need to be concerned with the children?
Rick Phelps
rphelps@mail.integrityonline15.com
Received: May 31, 1999

(BB#093) Test results

I'm a 26 yr old Male, Married with no children. I was diagnosed last September with Cardiomyopathy and my EF was around 15-20 % . The doctors did another ecocardiogram in Feb 1999 and my EF was 20-25%. The doctors are telling me that there is not a big increase within the first 4 months that it will not ever increase. Is this true. I'm on Lasix, Potassium, Zestril, Coreg, and other meds for other reasons, like asthma and I also take Zantac for Stomach problems. I weigh about 311 lbs and stand about 5ft 11 in tall they want me to lose about 100 pounds. This is very difficult for me do to I was very active before this happened and now can't due the same things. I'm searching for any information I can to help Me and My wife out. Please email me with some Info if possible my email address is Jflowers@pdq.net.
Thanks and God Bless !!!
JAMES FLOWERS 14
JFLOWERS@pdq.net
Received: May 31, 1999

(BB#092) Rest Ministries, Inc.

I enjoyed browsing your website. I am from Rest Ministries, Inc., a non-profit Christian organization for people who live with chronic illness or pain http://www.restministries.org We are the only national Christian organization that addresses and serves the 1 in 3 people who live with illness or pain. Please consider adding us to your links of resources and let us know how we can be of service to the people that you serve. If you do list us, please list us as "Rest Ministries, Inc. Chronic Illness/Pain Support." Hope you will drop by! We have a wide variety of articles and some very helpful links. I am sure you will enjoy your visit. Thank you for your time.
Lisa Copen
rest@ixpres.com
Founder & Director, http://www.restministries.org
Rest Ministries, Inc.
Serving people who live with chronic illness or pain.
PO Box 502928, San Diego, CA 92150
Toll-free 1-888-751-REST
From San Diego 619.237.1698
Received: May 21, 1999

(BB#091) Canine cardiomyopathy

I've noticed a lot of information about humans with this problem, but do you have any suggestions where I can look for information on canine cardiomyopathy? My year and a half old chocolate lab was just diagnosed... Thanks for any help you can give!
Thank you.
Eileen Quintal
eileenq@bellsouth.net
Received: May 19, 1999

Dear Eileen,

Sorry I've taken so long on this... and I still haven't looked around for recent links. There are a few on our earlier bulletin boards, but not many. A good place to start looking is in the Newsgroups... eg. DejaNews. If you don't know how to use them, let me know.

By the way, my Irish Wolfhound probably had DCM for quite a few years before I put her down at the age of 11 (not too bad for the breed); but I wish I had gotten a diagnosis early on. I tried everything to "get her into shape" for years, and was probably not doing the right thing.

I know there are some people who feel uncomfortable about mixing pets and people on the same page, but as long as I manage the page (which I HOPE won't be too much longer!) I strongly encourage cross communication. The diseases are obviously related in etiology, treatment, and research, and the pain and despair are -- for many people -- the same. In my case, it was a little different because I didn't know that I was dealing with DCM, but in the endgame, dealing with Namche's degenerating back was as terrible an ordeal as I am capable of registering. It would have been a lot easier if I had at least been able to plot out the trajectory of the disease, but I just couldn't get a handle it at all. I did what the vet told me to do, and it never worked very long, and I didn't know whether to throw in the towel or keep floundering around for a solution.

Anyway, that was before the Internet was of much use. I think we'll be able to dig up some leads for you.

Seth

P.S.
Hi, Eileen.
Here is a website with a section on Canine DCM: http://www.southpaws.com/topics/canine-dcm.html.

There are several messages regarding canine DCM posted on Bulletin Board #2 of my Website (listen.to/heartbeat) -- a bunch at the beginning and another toward the end.
Another good bet is to go to DejaNews (www.deja.com (formerly www.dejanews.com), and search the "complete archives" for "canine DCM cardiomyopathy."
I copied out all or most of the text from the southpaws website:

Canine Dilated Cardiomyopathy
Dilated cardiomyopathy (DCM) is a disease of the heart muscle which causes the heart to enlarge and not function properly. The disease usually afflicts larger breeds of dogs such as the Doberman pinscher, Scottish deerhound, boxer, Newfoundland, golden retriever, Labrador retriever, and the Irish wolfhound. However, it can also affect both the English and American cocker spaniel and rarely, other small breeds of dogs. The occurrence of dilated cardiomyopathy increases with age and typically has an age of onset between 4 and 10 years. The cause of DCM in dogs is still unknown; however, many factors suggest a genetic cause.

Dilated cardiomyopathy usually affects both the left and right sides of the heart with either side being more severely affected. Typically, both the ventricle (lower chamber) and the atria (upper chamber) enlarge and the ventricle loses its ability to contract and pump blood out to the body or the lungs. The consequence of the heart failing in its ability to pump blood can be compared to a simple mechanical pump. If the sump pump in your basement fails, water backs up into the basement; if the left heart fails, fluid backs up into the lungs and if the right heart fails, fluid backs up in the abdomen or space surrounding the lungs.

Long term prognosis for dilated cardiomyopathy varies considerably. Unfortunately, most dogs with signs of heart failure at the time of diagnosis die as a result of the disease within 6 months to two years. Unfortunately, some dogs, especially certain breeds with a more severe form of the disease may survive only weeks to a couple of months.

Treatment of dilated cardiomyopathy is aimed at both improving the heart's function and controlling the signs of congestive heart failure. Drugs such as Lanoxin (Digoxin, Digitalis) are used to help the heart contract better and to slow the heart rate down if certain arrhythmias exist. Once your dog is started on Lanoxin, you will be asked to watch for signs digoxin toxicity that, although uncommon, include loss of appetite, vomiting, diarrhea, and lethargy. These adverse signs can hopefully be avoided by having a blood test run by your regular veterinarian 7 to 14 days after the drug is initiated. To check for appropriate levels of Lanoxin in the bloodstream, a blood test must be drawn 6 to 8 hours after your dog’s morning dose of the Lanoxin. However, if any of these signs do occur, please call our office or your regular veterinarian. If these signs are severe, you can stop the Lanoxin and then call us; however, if the signs are mild, the ideal situation would be to go to your regular veterinarian and have a Digoxin level drawn so that we can be sure that the drug is causing the problems and the signs are not related to something else.

Diuretics are also used to help both control and prevent accumulation of fluid in or around the lungs. Lasix (Furosemide) is usually the drug of choice. Potential side effects of diuretic use include increased thirst and potentially increased urination. Another essential drug that is used in the treatment of dilated cardiomyopathy is termed a balanced vasodilator. This helps the heart pump more effectively against the pressures of the arteries and veins. Examples of this drug include Vasotec, Enacard, Zestril, Prinavil, and Lotensin. These drugs are usually started gradually with a low dose and then building up to your dog's required dosage. These drugs can occasionally interact with the kidneys. For this reason, you will be asked to see your regular veterinarian in 7 to 10 days, in 4 weeks, and then every three months to have a chemistry blood panel checked to assure that kidney function is preserved.

Other drugs utilized in the treatment of dilated cardiomyopathy are aimed at controlling cardiac arrhythmias (electrical disturbances in the heart). Arrhythmias can be very problematic in some cases of DCM and can even be life threatening. Certain breeds are more predisposed to this additional problem. If possible, it is a good idea to buy an inexpensive stethoscope to monitor your dog's heart rate and rhythm. Keep a journal of these records and if you are seeing a progressive increase or decrease in your dog's heart rate or hear an irregular heartbeat, please call our office.

It is also important for you to monitor your dog's overall attitude and outward signs. If you notice any heavy/labored breathing, coughing, fainting spells, restlessness, or profound lethargy, please call us or see your regular veterinarian as soon as possible.

Finally, your observations at home and your dedication in administering the prescribed medications in conjunction with our advice is what will help your dog the most. You know your pet the best. If you feel there is something wrong or you have any questions, please don't hesitate to call our offices.
HERE is a list of links relating to DCM posted on the Doberman FAQ page(http://www.fmi.cz/private/Romiik/images/dobrman/dobefaq.htm#cardio): Cardiomyopathy -
A very serious degenerative heart condition which causes sudden or congestive heart failure.

See also...

I hope all this is useful, Eileen. Good luck, and please keep us informed.
Seth

(BB#090) Hey! What's with the Bulletin Boards?

Are messages still being posted to the Bulletin Boards? I haven't seen any recent ones. I have cardiology and am very interested in comments by others with the disease.
Thank you.
Frieda Volpel
fvolpel@webtv.net
Received: May 20, 1999

Sorry, Frieda. I've been hoping someone (or someones) would step in and take over this page... I really can't continue. But ... here's another batch.
Seth