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SURVEY RESPONSES

This directory is compiled from information submitted in response to the Cardiomyopathy Survey. The survey responses are listed and numbered with the earliest appearing at the end of the page, and the most recent at the top. If errors have cropped up in the transcription process, or if you wish to edit your own listing, please contact
Seth Sicroff, Webmaster



(SR#061)
Date Posted: May 16, 2000
Name: Gerry Marcus
E-mail: railroad@bright.net
What form of cardiomyopathy do you have?
dilated
When were you diagnosed?
May 9, 2000
What treatments have you taken? Please describe results, if any.
Medication and now going for second opinion.
Do you have any recommendations for other cardiomyopathy patients?
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#060)
Date Posted: May 16, 2000
Name: Debbie
E-mail: kibblet@aol.com
What form of cardiomyopathy do you have?
I'm not sure yet. I'm having problems getting the information out of the doctors.
When were you diagnosed?
Yes.
What treatments have you taken? Please describe results, if any.
Lanoxin, Atenolol, Furosemide, Vasotec and K-Dur
Do you have any recommendations for other cardiomyopathy patients?
I don't know enough about it yet myself.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#059)
Date Posted: May 10, 2000
Name: David Picot
E-mail: annepicot@hotmail.com
What form of cardiomyopathy do you have?
dilated cardiomyopathy.
When were you diagnosed?
End of January 2000
What treatments have you taken? Please describe results, if any.
Standard Drugs
Do you have any recommendations for other cardiomyopathy patients?
Insufficient knowledge so far
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#058)
Date Posted: April 25, 2000
Name: Erin
E-mail: erinandkatie@yahoo.com
What form of cardiomyopathy do you have?
Peripartum cardiomyopathy
When were you diagnosed?
9/97
What treatments have you taken? Please describe results, if any.
Initially a range of medications including lasix, digoxin, vasotec, norvasc, something else I forget. Now am on zestril and norvasc.
Do you have any recommendations for other cardiomyopathy patients?
Information!
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#057)
Date Posted: April 24, 2000
Name: Neil McLeod
E-mail: neilmcleod@hotmail.com
What form of cardiomyopathy do you have?
Idiopathic Dilated
When were you diagnosed?
9/97
What treatments have you taken? Please describe results, if any.
Digoxin, Warfarin, Lisinopril (Zestril). Condition stable, some decline in vitality.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#056)
Date Posted:
April 24, 2000
Name:
Lora Sidwell
E-mail:
dlcc1365@hotmail.com
On whose behalf are you responding?
my son
What form of cardiomyopathy does he have?
dilated cardiomyopathy
Idiopathic Dilated
When was he diagnosed?
September 1999
What treatments has he taken? Please describe results, if any.
My son is currently taking the following medications. Vasotec, furosemide, digoxin, and he has just started taking carvedilol two weeks ago. There has been no change in his condition.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#055)
Date Posted:
April 6, 2000
Name:
Alison Robinson (28 yrs old)
E-mail:
dt.robinson@worldnet.att.net
What form of cardiomyopathy do you have?
DCM (familial)
Idiopathic Dilated
When were you diagnosed?
1/7/99
What treatments have you taken? Please describe results, if any.
I am taking Coreg, Vasotec and a Diuretic. In 14 months my VO2 has gone from 32% to 34% and my EF from 37 to 46%. I follow a strict low-sodium diet, NO ALCOHOL, and I have reduced my caffiene intake. I also exercise..
Do you have any recommendations for other cardiomyopathy patients?
Don't let the doctors crush your zest for life and your hopes for the future. This disease is a horrible reality but we have to look past it and find a way to have meaningful and fullfilling lives.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#054)
Date Posted:
March 23, 2000
Name:
mary ann
E-mail:
mam@milwpc.com
What form of cardiomyopathy do you have?
cause unknown but probably viral
Idiopathic Dilated
When were you diagnosed?
3-17-2000
What treatments have you taken? Please describe results, if any.
hctz, altace, digitalis
Do you have any recommendations for other cardiomyopathy patients?
stay positive!!!!!
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
not right now

(SR#053)
Date Posted:
March 9, 2000
Name:
Terri
E-mail:
morrison@ccahq.com
What form of cardiomyopathy do you have?
peripartum cardiomyopathy
When were you diagnosed?
March 1999
What treatments have you taken? Please describe results, if any.
coreg, monopril, lasix, aspirin therapy
Do you have any recommendations for other cardiomyopathy patients?
Stay informed. Find a doctor in which you can communicate. Get emotional support.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#052)
Date Posted:
March 3, 2000
Name:
John
On whose behalf are you responding?
Relative
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#051)
Date Posted:
Feb. 19, 2000
Name:
frank williams
E-mail:
fjw3247@spyral.net.com
What form of cardiomyopathy do you have?
dilated
When were you diagnosed?
2/14/00
What treatments have you taken? Please describe results, if any.
none as yet
Do you have any recommendations for other cardiomyopathy patients?
no
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#050)
Date Posted:
Feb. 1, 2000
Name:
Danyell Clark
E-mail:
Slippens10@aol.com
What form of cardiomyopathy do you have?
Acute Dialated cardiomyopathy Congestive Heart Failure
When were you diagnosed?
8/98
What treatments have you taken? Please describe results, if any.
medication: digoxin, cozzar, coreg, lasix, wafrin, and spiroaldacone
Do you have any recommendations for other cardiomyopathy patients?
No! I can't even help myself with this. I must lose half the weight I carry and I am gaining more weight. I need help
Would you like to participate in a Cardiomyopathy newsgroup? Yes!!
Would you like to be in personal contact with other cardiomyopathy patients?
Yes!!!

(SR#049)
Date Posted:
January 24, 2000
Name:
PATTI WHITE
E-mail:
samsmomtoo@webtv.net>
What form of cardiomyopathy do you have?
DILATED CARDIOMYOPATHY
When were you diagnosed?
JAN.1995
What treatments have you taken? Please describe results, if any.
COREG,COZAAR,LASIX,CLONIDINE
Do you have any recommendations for other cardiomyopathy patients?
Don't think that because your meds start making you feel better you can stop taking them. I did and went into CHF again. I guess I was in my denial phase.I was diagnosed also with left vent. dysfunction.I'm only 40.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#048)
Date Posted:
January 11, 2000
Name:
Jamie Prince
E-mail:
pryncess_jp@yahoo.com>
Do you have cardiomyopathy?
I did, I got a heart transplant
What form of cardiomyopathy did you have?
I had dialated cardiomyopathy. I was diagnosed when I was 13 years old. For 2 years on and off I was on the transplant list. I have so sooooo much to say. I am now 16 years old and in highschool and going to graduate, although I missed so much school. Everyone thinks I am a miracle child. What does that mean? Well anyways I'm doing good but I think my mom who is 37 and my 4 year old brother have signs of Dialated Cardio. My grandma died of the same thing when she was 55. I got it 1 year later, so we know that it is hereditary.Well I better go. I bless all of those struggling, I know you can fight it I did.
When were you diagnosed?
January 30, 1997
What treatments did you take? Please describe results, if any.
before transplant- vasotec, lasex, dopomine,zoloft, I don't remember the rest. After transplant as of now- neoral, lasex, vasotec, bactrim, zoloft, azothiaprine,vitamin-E, and I forget the others theres way to many
Do you have any recommendations for other cardiomyopathy patients?
I pressure YOU to be strong like I was. That's the only way you can fight it. And even though you won't want to like I didn't listen to your doctor!
Would you like to participate in a Cardiomyopathy newsgroup? No
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#047)
Date Posted:
January 4, 2000
Name:
Vicki Denney
E-mail:
Chickcoup@aol.com>
What form of cardiomyopathy do you have?
non-ischemdic dialated cardiomyopathy, past history congestive heart failure
When were you diagnosed?
july 1996
What treatments did you take? Please describe results, if any.
Lots of meds, lasix, coumadin,nitro, Potassium, lanoxin, and numerous others
Do you have any recommendations for other cardiomyopathy patients?
Keep searching for answers. Ask lots of questions
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#046)
Date Posted:
December 26, 2000
Name:
Chasta Vest
E-mail:
ChastaV@aol.com
What form of cardiomyopathy do you have?
Peripartum
When were you diagnosed?
5/1998
What treatments did you take? Please describe results, if any.
Lasix, can't remember the other one-a heart med.
Do you have any recommendations for other cardiomyopathy patients?
Learn all you can-most doctors have little or no experience in this.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#045)
Date Posted:
Nov. 19, 2000
Name:
Diane Davis
E-mail:
ChastaV@aol.com
On whose behalf are you responding?
husband
What form of cardiomyopathy does he have?
idiopathic dilated cardiomyopathy
When was he diagnosed?
1996
What treatments has he taken? Please describe results, if any.
now has implanted ICD/pacemaker
Do you have any recommendations for other cardiomyopathy patients?
dialy excercise to tolerance
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes and spouses/s.o.'s

(SR#044)
Date Posted:
Nov. 18, 2000
Name:
Darrell Renfroe
E-mail:
drenfroe1@mindspring.com
What form of cardiomyopathy do you have?
Dilated Cardiomyopathy
When were you diagnosed?
1989
What treatments have you taken? Please describe results, if any.
Medications
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#043)
Date Posted:
Nov. 11, 2000
Name:
Isidro L. Durazo
E-mail:
rnoriega@dakotacom.net
What form of cardiomyopathy do you have?
dilated
When were you diagnosed?
June 3, 1999
What treatments have you taken? Please describe results, if any.
zestril, nistroquik, rest, no exercise
Do you have any recommendations for other cardiomyopathy patients?
Not yet, but I sure need some.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes, definitely

(SR#042)
Date Posted:
Oct. 21, 1999
Name:
Lorene Scott
E-mail:
Lorene1941@aol.com
What form of cardiomyopathy do you have?
Dilated cardiomyopathy
When were you diagnosed?
August 1,1999
What treatments have you taken? Please describe results, if any.
lasix,zestril,coumadin,potassium.nitro patch
Do you have any recommendations for other cardiomyopathy patients?
if they are all taking the enzyme coq10?
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#041)
Date Posted:
Oct. 21, 1999
Name:
Ruth Abcarius
E-mail:
abcrut@dm.net.lb
What form of cardiomyopathy do you have?
Dilated cardiomyopathy
When were you diagnosed?
1996
What treatments have you taken? Please describe results, if any.
tritace ( ramipril ) 2.5 ones daily 1 tbl.
Do you have any recommendations for other cardiomyopathy patients?
no, not yet.
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#040)
Date Posted:
Oct. 15, 1999
Name:
Vanessa
E-mail:
vt56@aol.com
What form of cardiomyopathy do you have?
Idiopathic Dilated Cardiomyopathy
When were you diagnosed?
1/99
What treatments have you taken? Please describe results, if any.
I am on Coreg, Vasotec, Digoxin and Non RX Ecotrin. This week I was also put on Cozaar in addition to the other meds. Until recently I was feeling pretty good. My BP was too high at my last visit to the cardiologist. That was why he added the Cozaar.
Do you have any recommendations for other cardiomyopathy patients?
Listen to your body. If you body is telling you it feels tired, rest, relax, lay down.
Would you like to participate in a Cardiomyopathy newsgroup? Yes I would. The more info we can gather the better off we all will be!
Would you like to be in personal contact with other cardiomyopathy patients?
Yes I would. Please contact me.

(SR#039)
Date Posted:
September 30, 1999
Name:
Pauline
E-mail:
chloe276@aol.com
What form of cardiomyopathy do you have?
Dilated Cardiomyopathy
When were you diagnosed?
June 1999
What treatments have you taken? Please describe results, if any.
Lisonopril, Butmentadine, Asprin
Do you have any recommendations for other cardiomyopathy patients?
Take co-enzymeQ10 (up to 120mg per day) plus cayenne pepper and garlic. Keep a positive mental attitude!!!
Would you like to participate in a Cardiomyopathy newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#038)
Date Posted:
Sept. 27, 1999
Name:
mac loughlin
E-mail:
hml40548@glaxowellcome.co.uk
On whose behalf are you responding?
wife
What form of cardiomyopathy does she have?
dilated
When was she diagnosed?
7 years ago
What treatments has she taken? Please describe results, if any.
digoxin 0,25 mg per day; enalapril 10 mg per day; low salt diet; moderated exercise
Do you have any recommendations for other cardiomyopathy patients?
not at this moment
Would you like to participate in a Cardiomyopathy newsgroup? yes,please
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#037)
Date Posted:
Sept. 26, 1999
Name:
Rick Cole
E-mail:
rcole716@aol.com
What form of cardiomyopathy do you have?
dilated
When were you diagnosed?
sept. 99
What treatments have you taken? Please describe results, if any.
Mucho Mediciations and an ICD for insurance
Do you have any recommendations for other cardiomyopathy patients?
Just starting to look
Would you like to participate in a cardiomyopathy newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
By Email only (I think)

(SR#036)
Date Posted:
Sept. 20, 1999
Name:
Karen Ries
E-mail:
kingpin@scnc.ds.k12.mi.us
On whose behalf are you responding?
son, Seth
What form of cardiomyopathy does he have?
DCM, resulting from viral myocarditis as infant
When was he diagnosed?
2/93 at ten months of age
What treatments have you taken? Please describe results, if any.
Did well for five years on meds (dig,captopril, aspirin), then failed dramatically 6/98, underwent heart transplantation 7/10/98 at six years of age. Seth has done wonderfully since being transplanted and looks the healthiest we've ever seen him! He is so happy and full of life!
Do you have any recommendations for other cardiomyopathy patients?
Never be afraid to seek a second opinion. There is still not much information regarding long term prognosis with cardiomyopathy. Be diligent with taking your meds and keeping your overall health the best that you can.
Would you like to participate in a cardiomyopathy newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
By Email only (I think)

(SR#035)
Date Posted:
Sept. 7, 1999
Name:
Linda
E-mail:
ballyhoo@atlantic.net
What form of cardiomyopathy do you have?
Idiopathic Dilated Cardiomyopathy
When were you diagnosed?
June 18, 1996
What treatments have you taken? Please describe results, if any.
I am currently taking Lanoxin, Lotensin, Coumadin, Coreg and Lasix
Do you have any recommendations for other cardiomyopathy patients?
I am looking for any support - I am currently under evaluation for a heart transplant
Would you like to participate in a cardiomyopathy newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#034)
Date Posted:
Sept. 6, 1999
Name:
Susie
E-mail:
slugger69_ss@yahoo.com
What form of cardiomyopathy do you have?
ideopathic dilated cardiomyopathy
When were you diagnosed?
Feb. 1999
What treatments have you taken? Please describe results, if any.
Digoxen, aspirin, atenolol, captopril,hydrochlorothaizide,cardura
Would you like to participate in a cardiomyopathy newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#033)
Date Posted:
Sept. 6, 1999
Name:
Sandy
E-mail:
sandyk52@hotmail.com
What form of cardiomyopathy do you have?
ideopathic dilated cardiomyopathy
When were you diagnosed?
May '95
What treatments have you taken? Please describe results, if any.
All of the usual medications except no diuretics. Also I am in a national study through Mayo Clinic taking Diovian. It's a blind study.
Do you have any recommendations for other cardiomyopathy patients?
You bet I do! Heart ejection was at 12% in '95. Now I'm at 27.5. You have got to know your body. I also take lots of vitamins and coenzme Q10.
Would you like to participate in a cardiomyopathy newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#032)
Date Posted: July 29, 1999
Name: Tim Kalman
E-mail: Kalmans@worldnet.att.net
Do you have cardiomyopathy? Yes.
What form of cardiomyopathy do you have?: Idiopathic dilated cardiomyopathy. I was 33 at the time of diagnosis with an ejection fraction of approx. 20 %.
When were you diagnosed? October 11, 1996
What treatments have you taken?
Please describe results, if any.: I was initially told to take six months off of work, which I did. I take multiple medications, as do most of your respondants. I was annointed (in abstensia - Doc to me to stay home) at the alter of my church.
Do you have any recommendations for other cardiomyopathy patients? It's hard to say. I too was upset with my Doctor - I felt like he knew more than he was telling. I'm not so sure that is the case anymore - and by reading others similar struggles, I am leaning towards thinking he just doesn't know. I know I feel best when I am strong physically, mentally, and spiritually. I must get my rest, I too take a vitamin, and try to eat fairly well. I try to keep my mind sharp as well and like to read before sleeping - this seems to help me sleep. I try to maintain a right relationship with God. I think these are all keys. I am fortunate to have a good group of friends for support as well. Remaining positive and having a sense of humor is very important.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#031)
Date Posted: July 27, 1999
Name: lissa laissle
E-mail: rwl@prodigy.net
Do you have cardiomyopathy? No.
On whose behalf are you responding? my husband
What form of cardiomyopathy does he have?: dialated, idiopathic
When was he diagnosed? june 1999
What treatments has he taken? Please describe results, if any:
So far he is taking toprol xl 100mg, hyzaar 50-12.5 and 1 aspirin. Starts cardio rehab tomorrow. no salt, lo fat,no alcohol, lose weight
Do you have any recommendations for other cardiomyopathy patients? I am still very much in the research phase. So the only recommendations I have at this point would be find out all you can and make sure you or a family member are the Primary Care Provider, But I would say that no matter what the disease was!
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#030)
Date Posted: July 10, 1999
Name: cathy
E-mail: swoop35499
Do you have cardiomyopathy? No.
On whose behalf are you responding? my son
What form of cardiomyopathy does he have?: dcm genetic
When was he diagnosed?
What treatments has he taken? Please describe results, if any:
heart transplant
Do you have any recommendations for other cardiomyopathy patients?
Would you like to participate in a Cardiomyopathy Newsgroup?
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#029)
Date Posted: July 4, 1999
Name: Jim Powell
E-mail: jpowell@ix.netcom.com
What form of cardiomyopathy do you have? idiopathic cardiomyopathy
When were you diagnosed? April 99
What treatments have you taken? Please describe results, if any.
digoin, atenolol, lasix, zestril, warfarin started cq10
Do you have any recommendations for other cardiomyopathy patients?
not yet... but just a comment. I'm 42 and had no clue I had this problem. went to doctor for refill of allergy med, and he found I was in CHF, with ejection fraction of 30
Would you like to participate in a Cardiomyopathy Newsgroup?
Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#028)
Date Posted: June 24, 1999
Name: LOIS SCHAFER
E-mail: WACKYDOO@JUNO.COM5
What form of cardiomyopathy do you have?
IDIOPATHIC CARDIOMYOPATHY
When were you diagnosed? 12/90
What treatments have you taken?
INITIALLY: BED REST COUPLED WITH BETS BLOCKERS,ISOSORBIDE DN, VASOTEC, ASA(325MG) 1DAILY AFTER 3 MOS. GRADU. INCREASE IN ACTIVITY. UPON DIAG. C/O WAS 43. AFTER 6 MOS. WAS 62. SUBSEQUENT MUGA SCAN C/O OF 66 & 68. STARTED PARTTIME WORK 8 HOURS/WK AFTER 5 YRS. LOW LEVEL ACTIVITY. AM NOW TRANSFERRED TO NEW CARDIOLOGIST DUE TO PREVIOUS DR. RETIREMENT. AM TO HAVE STRESS-ECHO-STRESS TEST SOON. THIS DOC SUSPECTS POSS. RECOVERY FROM DISEASE. WAS SHOCKED SINCE WAS GIVEN INITAIL IMPRESSION THAT ONCE ONE HAS IT, ALWAYS HAS IT. I SURMISED IT COULD BE CONTROLLED FOR SOME TIME BUT WOULD LIE DORMANT. ANY INFO FROM OTHERS REGARDING "TOTAL RECOVERY" POSSIBILITIES?? AM NOT FINDING SUFFICIENT INFO IN THIS REGARD.
Do you have any recommendations for other cardiomyopathy patients?
EDUCATION!!! FIND OUT ALL YOU CAN...MUCH DIFFERING OF OPINION IN MEDICAL PROFESSION, I AM FINDING. ..A FEW HAVE JUST A SMATTERING OF KNOWLEDGE ( FAM.DOCS AND INTERNISTS) TAKE CHARGE. AND FOR YOU NEWLY DIAGNOSED....IT IS NOT NECESSARLIY A DEATH SENTENCE. FIGHT YOUR WAY THRU' IT!!! LISTEN TO YOUR OWN BODY!
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#027)
Date Posted: June 24, 1999
Name: Anne
E-mail: amrowlan@juno.com
What form of cardiomyopathy do you have?
idiopathic dilated
When were you diagnosed? March, l999
What treatments have you taken?
Ace Inhibitor, Beta Blocker, diuretics
Do you have any recommendations for other cardiomyopathy patients?
Talk with each other. Share experiences
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#026)
Date Posted: June 1, 1999
Name: Lori Smith
E-mail: Psylocke_RULZ@yahoo.com
What form of cardiomyopathy do you have?
Post Partum Cardiomyopathy
When were you diagnosed? 5-28-99
What treatments have you taken?
They have me on heart meds now similar to the ons my parents take for congestive heart failure.
Do you have any recommendations for other cardiomyopathy patients?
Just to find out all you can on the subject since not much is known about it.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#025)
Date Posted: June 1, 1999
Name:James Flowers
E-mail: jflowers@pdq.net
What form of cardiomyopathy do you have?
Dilated cardiomyopathy
When were you diagnosed? September 1998
What treatments have you taken?
Lasix, Potassium, Zestril, Coreg, and Cardio Rehab 3 times a week
Do you have any recommendations for other cardiomyopathy patients?
Not at this time.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#024)
Date Posted: May 23, 1999
Name: Joe Diamond
E-mail: joediamond@joediamond.com
What form of cardiomyopathy do you have?
idyopathic dilated cardiomyopathy
When were you diagnosed? April 1999
What treatments have you taken?
Balloon angioplasty was performed on two blockages, but hey were not the cause of the CHF. I was taking Lopressor, Lasix, Zocor, Plavix, Zestril and K-Dur.But because I developed a bad case of hives we are experimenting with a different mix of medicines and for now I'm now taking Digoxin, aspirin and Zocor. The diuretic Lasix seemed to have be the major cause of my hives.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#023)
Date Posted: April 5, 1999
Name: Kim Sebastian
E-mail: lalakimmie@aol.com
What form of cardiomyopathy do you have?
Peripartum Cardiomyopathy
When were you diagnosed? August 1998
What treatments have you taken?
Vasotec, Coreg, Digoxin, Lasic, HCTZ, Kdur, aspirin
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes, PPCM women can access a PPCM support group website
through http://meltingpot.fortunecity.com/malaysia/375/index.html

Date Posted: April 5, 1999
Name: PHIL McGOVERN
E-mail: CLOVERGARAGE@BTINTERNET.COM
What form of cardiomyopathy do you have?
DILATED cardiomyopathy
When were you diagnosed? 29/3/99
What treatments have you taken?
INNOVACE ENALAPRIL MALEATE
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes

(SR#022)
Date Posted: April 1, 1999
Name: Gary Davis
E-mail: gjdavis@bright.net
What form of cardiomyopathy do you have?
DILATED cardiomyopathy
When were you diagnosed? dec.1984
What treatments have you taken?
med., exercise
Do you have any recommendations for other cardiomyopathy patients?:
find a good doctor & listen to him
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes

(SR#021)
Date Posted: April 1, 1999
Name: Deb
E-mail: ebrheam@acsworld.net
What form of cardiomyopathy do you have?
dilated cardiomyopathy, probably secondary to my history of alcohol abuse.
When were you diagnosed? August 1994
What treatments have you taken?
tried Vasotec and Zestril; currently taking Lotensin, Lasix and ASA. Participated in Cardiac Rehab
Do you have any recommendations for other cardiomyopathy patients?:
None. I am looking for help from anyone concerning wt.loss, diet, smoking cessation, coping with fatigue, dysapnea, depression etc
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes

(SR#020)
Date Posted: March 30, 1999
Name: Chas
E-mail: chasm2@hotmail.com
What form of cardiomyopathy do you have?
ideopathic dilated
When were you diagnosed? october 1997
What treatments have you taken?
coreg 25mg twice a day, captopril(currently trying it for a second time. first time resulted in bad reaction)
Do you have any recommendations for other cardiomyopathy patients?
Do a lot of research. Learn ALL you can about this disease. Doctors WILL NOT tell you everything. Take vitamins and Question your Dr. about alternative medications!!!
Would you like to participate in a Cardiomyopathy Newsgroup? YES
Would you like to be in personal contact with other cardiomyopathy patients?
YES

(SR#019)
Date Posted: March 29, 1999
Name: Paul Gardiner
E-mail: paulg@netcom.ca
What form of cardiomyopathy do you have?
Dilated Cardiomyopathy
When were you diagnosed? 1990
What treatments have you taken?
Zestril
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients?
Yes

(SR#018)
Date Posted: March 22, 1999
Name: kathleen hooper
E-mail: kathleenhooper@juno.com
What form of cardiomyopathy do you have?
dilated with ef of 40
When were you diagnosed? 10/97
What treatments have you taken?
Do you have any recommendations for other cardiomyopathy patients?
spiritual attitude not to give up to the disease
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes yes yes

(SR#017)
Date Posted: March 19, 1999
Name: Doris
E-mail: RoughGoing [sic]
What form of cardiomyopathy do you have?
Idiopathic Dilated Congestive Heart Failure
When were you diagnosed? Aug. 1998
What treatments have you taken?
Medications: Coreg, Vasotec, Nitroglycerin, Nitrostat (for emergencies), Coumadin, Lasix, and K-DUR(Potassium)
Do you have any recommendations for other cardiomyopathy patients?
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes

(SR#016)
Date Posted: March 16, 1999
Name: Patricia
E-mail: This1z4u@aol.com
Do you have cardiomyopathy? no
On whose behalf are you responding?: Son, age 3 years
What form of cardiomyopathy does he have?
Dilated Cardiomyopathy
When were you diagnosed? Sept. 1997
What treatments has he taken?
Digoxin, Captopril, COQ10, Carnitor
Do you have any recommendations for other cardiomyopathy patients?
If you don't get enough information from your doctor, change doctors.
Would you like to participate in a Cardiomyopathy Newsgroup? Yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes

(SR#015)
Date Posted: March 3, 1999
Name: Ambreen
E-mail: Ambsalman@aol.com
Do you have cardiomyopathy? no
On whose behalf are you responding? my father
What form of cardiomyopathy does he have?
Dilated Cardiomyopathy
When was he diagnosed? jan 1999
What treatments has he taken?
dijoxin,analapril,asprin
Do you have any recommendations for other cardiomyopathy patients?
If you don't get enough information from your doctor, change doctors
Would you like to participate in a Cardiomyopathy Newsgroup? no
Would you like to be in personal contact with other cardiomyopathy patients? no

(SR#014)
Date Posted: March 4, 1999
Name: Brenda H.
E-mail: Hansonfoxi@aol.com
What form of cardiomyopathy do you have?
Peripartum Cardiomyopathy (form of dilated)
When were you diagnosed? 9/98
What treatments have you taken?
  • Prinivil 15 mg's 2 x's a day
  • Coumiden 7.5 mg's a day
  • Lasix as needed ( Coreg soon)
  • CoQ10 50 mg's
Do you have any recommendations for other cardiomyopathy patients?
God is amazing, believe in him. Listen to you Dr. Research. Talk to others. Watch your diet,exercise if you can. Keep a positive attitude!
Would you like to participate in a Cardiomyopathy Newsgroup? Sure
Would you like to be in personal contact with other cardiomyopathy patients? Yep

(SR#013)
Date Posted: Feb. 27, 1999
Name: Shannon
E-mail: thewootens@earthlink.net
What form of cardiomyopathy you have?
Dilated
When were you diagnosed? October 1998
What treatments have you taken?
medication
Do you have any recommendations for other cardiomyopathy patients?
no,I would like some too.
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients? No
(SR#012)
Date Posted: Feb. 19, 1999
Name: Brian Stephenson
E-mail: 1plantman@msn.com
What form of cardiomyopathy you have?
Dilated Congestive Cardiomyopathy
When were you diagnosed? 4 1/2 years ago
What treatments have you taken?
digoxin, accupril, captril,diltizam
Do you have any recommendations for other cardiomyopathy patients?
Keep as active as you can, keep your mind clear and trust in God
Would you like to participate in a Cardiomyopathy Newsgroup? Sure
Would you like to be in personal contact with other cardiomyopathy patients? Yes
(SR#011)
Date Posted: Feb. 18, 1999
Name: Bonnie Patterson
E-mail: Pattersob1@ten-nash.ten.k12.tn.us
Do you have cardiomyopathy? No
On whose behalf are you responding? daughter
What form of cardiomyopathy does she have?
dilated cardiomyopathy
When was she diagnosed? 1991
What treatments has she taken?
digoxin, accupril, captril, diltizam
Do you have any recommendations for other cardiomyopathy patients?
ask lots of questions and look for second opinions if you are not sure if you are getting the right care
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes
(SR#010)
Date Posted: Feb. 4, 1999
Name: Linda Monserrate
E-mail: monserrate-ia@juno.com
Do you have cardiomyopathy? No
On whose behalf are you responding? my son, age 12
What form of cardiomyopathy does he have?
idiopathic dilated
When was he diagnosed? Jan. 1999
What treatments has he taken?
captopril 25 mg 3 times daydigoxin 0.25 mg 1 time day
Do you have any recommendations for other cardiomyopathy patients?
Develop checklist of noted symptoms/behavior to assist recognition earlier
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes, particularly young or those with memory loss/though process difficulties and fatigue
(SR#009)
Date Posted: Feb. 2, 1999
Name: P Watjen
E-mail: pwatjen@vincennes.net
What form of cardiomyopathy do you have?
dilated
When were you diagnosed? 12/15/94
What treatments have you taken? medication
captopril 25 mg 3 times daydigoxin 0.25 mg 1 time day
Do you have any recommendations for other cardiomyopathy patients? Don't drink any alchohol after you have been diagnosed. My Dr did not stress this strong enough!!
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients? Yes
(SR#008)
Date Posted: Feb. 1, 1999
Name: Chuck Coleman
E-mail: k5lzo@symet.net
What form of cardiomyopathy do you have
dilated
When were you diagnosed? 1/29/99
What treatments have you taken?
first diagnosed 12/23/97 withCHF. Digoxin, Vasotec, Warfarin, Coenzime Q, Furosimide
Do you have any recommendations for other cardiomyopathy patients? No
Would you like to participate in a Cardiomyopathy Newsgroup? I don't believe so.
Would you like to be in personal contact with other cardiomyopathy patients? If they wish.
(SR#007)
Date Posted: Jan. 24, 1999
Name: dennis brewer
E-mail: brewer@jcn.com
What form of cardiomyopathy do you have? idiopathy
When were you diagnosed? dec 1998
What treatments have you taken? Please describe results, if any.
I have just started
Do you have any recommendations for other cardiomyopathy patients?
I DON'T KNOW ENOUGH TO RECOMMEND ANYTHING
Would you like to participate in a Cardiomyopathy Newsgroup? YES
Would you like to be in personal contact with other cardiomyopathy patients? YES
(SR#006)
Date Posted: Jan. 5, 1999
Name: Jennifer
E-mail: JRobi87102@aol.com
What form of cardiomyopathy do you have?
Peripartum CM from pregnancy.
When were you diagnosed? Just 8 weeks ago, in Nov 98.
What treatments have you taken? Please describe results, if any.
Just taking capoten and tenormin right now. Doc thinks I will improve by myself. I am at 45% right now. Blood pressure sky high still though. I am only 27 also.
Do you have any recommendations for other cardiomyopathy patients?
I wish I did. I dont know much about it yet either. Wish to hear from somebody about this too.
Would you like to participate in a Cardiomyopathy Newsgroup? yes
Would you like to be in personal contact with other cardiomyopathy patients? yes
(SR#005)
Date Posted: Jan. 5, 1999
Name: L. Campbell
E-mail: campbells@voyager.net
What form of cardiomyopathy do you have?
familial DCM
When were you diagnosed? June 1995
What treatments have you taken? Please describe results, if any.
Medicine: vasotec, lasix, potassium
Do you have any recommendations for other cardiomyopathy patients?
exercise, vitamins
Would you like to participate in a Cardiomyopathy Newsgroup?
yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes
(SR#004)
Date Posted: Dec. 14, 1998
Name: Lydia Underwood
E-mail:
What form of cardiomyopathy do you have?
dilated
When were you diagnosed? 1984
What treatments have you taken? Please describe results, if any.
diuretics, blood pressure medication, digoxin
Do you have any recommendations for other cardiomyopathy patients?
exercise, vitamins
Would you like to participate in a Cardiomyopathy Newsgroup?
yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes
(SR#003)
Date Posted: Nov. 24, 1998
Name: Julie Felps
E-mail: julesbug78@aol.com
On whose behalf are you responding? my son - age 18
What form of cardiomyopathy does he have?
dilated cardiomyopathy
When was he diagnosed? 10/98
What treatments has he taken? Please describe results, if any.
1.Accupril 10 mg daily 2.will begin taking Coreg soon
Do you have any recommendations for other cardiomyopathy patients?
exercise, vitamins
Would you like to participate in a Cardiomyopathy Newsgroup?
yes
Would you like to be in personal contact with other cardiomyopathy patients?
yes - particularly younger people or parents of teens with this
(SR#002)
Date Posted: October 29, 1998
Name: Paul Stephenson
E-mail: pbstephenson@linknet.net
What form of cardiomyopathy do you have?
dilated
When were you diagnosed? 1995
What treatments have you taken? Please describe results, if any.
ace inhibitor, lasix, digoxin
Do you have any recommendations for other cardiomyopathy patients?
coQ10,Lcarnatine
Would you like to participate in a Cardiomyopathy Newsgroup?
yes
Would you like to be in personal contact with other cardiomyopathy patients?
not yet
(SR#001)
Date Posted: October 5, 1998
Name: Caroline
E-mail: budzzz@gj.net
What form of cardiomyopathy do you have?
Idiopathic Dilated Cardiomyopathy
When were you diagnosed? 8/97
What treatments have you taken? Please describe results, if any.
Coreg, but am allergic to it, so I'm no longer on it.
Do you have any recommendations for other cardiomyopathy patients?
Keep up with findings about the disease, keep in contact with others that have it, and don't give up hope.
Would you like to participate in a Cardiomyopathy Newsgroup? Definitely
Would you like to be in personal contact with other cardiomyopathy patients?
Would be great