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Part Four

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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#091) 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#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

(BB#089) a zoning officer story

I have had dcm for 3.5 years. I have a defib which has shocked me once already at full steam. I am 40 years old with an efraction rate of 19%. Question, how long can i expect to live with this disease? My docs are unsure, what is your opinion? I am on vasotec coumadin and diogixin. just curious.

By the way, I like my job

michael siegel

msiegel@ot.com

Received: May 1, 1999

(BB#088) Terrified

I'm a 25 year old male, who was diagnosed last year in sept 1998. I didn't know anything about this disease at all. Me and my wife are extremely terrified about this disease I would like to get as much info on this as I can. Anybody with so valuble info please email it to me so i can gather as much info as I can, [TRUNCATED]

james flowers

jflowers@pdq.net

Received: April 25, 1999

(BB#087) How come???

Was diagnosed with DCM in October 1998. Went to hospital with pulmonary edema. Prior to this had no syptoms whatsoever. I am 59 years of age and do not smoke, drink, and have always tried to take good care of myself. Was dumbfounded to find out that my heart muscle was and still is working at only 15% when 60% is normal. Was put on lasix and digoxin .125 mg and sent home being told that I was totally disabled. What a shock! Had never heard of this disease before. Fortunately a week after I got home I had an appointment with my prime physician and they were able to set an appointment for me with a cardiologist that very day, who works at the NYS Heart Center near a teaching college. I was started on vasotec in low doses and worked up to 20 mg 2 times daily. I also was put on coumadin 4mg daily to thin the blood, as with the enlarged left ventrical the mitro valve does not close and blood slushes back and forth and could cause a possible stroke. I [TRUNCATED]

Karen

jgaleotti@odyssey.net

Received: April 21, 1999

(BB#086) Need advice on scanning

MY BROTHER AND I HAVE RECENTLY HAD A SCAN FOR CARDIOMYOPATHY I WAS FOUND TO BE FINE BUT MY BROTHER HAS THE DISEASE HE IS 32 IAM 29. OUR MAIN CONCERN ARE HIS YOUNG FAMALY HIS DAUGHTER IS 2AND HIS SON IS 3 MOUNTHS. HIS WIFE WOULD LIKE TO KNOW HOW SOON YOU SHOULD START HAVEING THEM SCANNED. THAY HAVE ANOTHER APPONINTMENT AT THE HOSPITAL IN A FEW WEEKS SO HOPE FULLY THE CONSULTANT CAN ADVICES THEM BETTER ON THIS MATTER.WOULD LOVE TO HEAR FROM ANY ONE WHO CAN HELP.

Dave

TEASDALE58.FREESERVE.CO.UK

Received: April 20, 1999

(BB#085) Just Diagnosed

MY NAME IS DAVE AND I LIVE IN THE UK .JUST AFTER XMAS MY SELF AND BROTHER WERE TESTED FOR CARDIOMYOPATHY . I WAS FOUND TO BE FINE BUT MY BROTHER HAS THE CONDITION HE IS 32. HE HAS A YOUNG FAMELY A GIRL OF 2 AND A BOY OF 4MOUNTHS , MY BROTHERS QUESTION TO ANY ONE WHO CAN HELP IS HOW OFTEN AND WHEN CAN YOU START TO HAVE YOUR CHILDREN CHECKED FOR THIS CONDITION. I WOULD BE MOST GREATFULL FOR AS MUCH INFORMATION A POSSIBEL OR ANY WEB SITE ADDRESS. THANKYOU SO MUCH...................

dave wilson

james@teasdale58.freeserve.co.uk

Received: April 20, 1999

(BB#084) Discrepant Tests!

I was just diagnosed with dilated cardiomyopathy in March of '99. An echo cardiogram showed an ejection fraction of 25. Started on beta blockers and ACE inhibitors. Two weeks later, a MUGA scan showed an EF of 49. Doctors not sure yet whether one test or the other was misread. However, a second echo showed that the higher figure was probably more correct. Has anyone else experienced a discrepancy in test results like this?

Dave

mfrost@tcoc.org

Received: April 18, 1999

(BB#083) Too old for surgery

I found your very helpful sight while searching for DCM. I am 79 years old and was diagnosed with idiopathic DCM plus regurgitating aortic and mitral valves in l993, after a brief siege of CHF. I was immediately put on Vasotec, Lasix, Toprol and Lanoxin. I was coping quite nicely until a bout of Atrial Fibrillation in l996, for which I needed electro cardioversion to restore sinus rhythm. I added Cordarone and Coumadin to my medicines. The Cordarone seems to keep the heart in normal rhythm. Recently I heard about L-Carnitine and C0-Ql0. My doctor said "OK" so I am taking 500 mg of L-C and 60 mg of C0-Q10 daily.

It's still early but I think I have more energy and I hope to improve further. No family member ever had DCM so I was very surprised to get it. I'm too old for surgery so hope to live out my remaining days with a positive attitude and faith in God. I can still use a treadmill and lift some weights for which I am thankful.

Frieda Volpel

fvolpel@webtv.net

Received: April 17, 1999

(BB#082) cardiomyopathy and pregnancy

I was diagnosed with cardiomyopathy following my first pregnancy. It has been two and a half years since I gave birth to a very healthy baby girl. Recently my husband and I have considered the possibility of having another child. My doctor is strongly against the idea of my ever having another child and almost even refuses to discuss the risks so that we can make an informed decision. Does anyone else have this problem? Where do I go to find the necessary information ? My health has improved in the past two years since my EF has gone from 20% to 50% and I'm anxious to explore the next step.

Help !!!

michelle hale

chiddles99@hotmail.com

Received: April 14, 1999

(BB#081) Your PPCM request Hi Michelle, My name is Lee, and Seth sent me a copy of your email to his cardiomyopathy site because he knew you needed help (hope that was OK). I would like to help you, but I personally know little about PPCM. However, there is a Registered Nurse, who has a site up—PPCM Support Group—you can write her at "Lalakimmie@aol.com" and her name is Kim Sebastian. Her site is http://meltingpot.fortunecity.com/malaysia/375/index.html . She has a new site with 13 members already—all young, with little ones. There is another site that is un-equalled as far as cardiomyopathy and CHF is concerned. His name is Jon M. and his site is called, The Beat. The URL is: http://geocities.com/heartland/hills/2571/heartforum.htm There are some younger women there with PPCM and you can post a message to the site and I know they will help. My own feeling is perhaps you need another consultation re a 2nd pregnancy. Was it your cardiologist or your regular M.D. who felt you should not have a second child? I think they are concerned that you could relapse. Anyway, Michelle, thoughts are with you and I hope these two sites can help. My name is Lee and I have a site at http://www.geocities.com/msleeroush It is only just beginning to evolve, but I'll keep you posted. Take care and good luck! Bestest, Lee LeeRoush@aol.com Received: April 15, 1999

(BB#080) Living with Cardiomyopathy

Since my last contact no medications have been changed. I've had a rough episode. I must say I wasn't expecting that since I am on COREG. It was my enability to handle fluids. Let me tell you, stay away from salt! And its everywhere. I don't add salt to anything I cook. However, I was using mustard and mayo on occasion. I guess when you have CHF, even thats too much salt. Maybe a total vegetarian diet is the way for me? Any feedback would be appriciated. Thank you very much and stay strong and positive.

Doris

RoughGoing@AOL.COM

Received: April 14, 1999

(BB#079) Website takeover?

Hi Seth...

Thanks so much for your reply. Am doing pretty good with the DCM--am 59 years old--and also have an ICD (Internal Cardioverter Defibrillator) implanted.

Yes, I do know HTML, but am certainly not an expert. You can take a look at my site at GeoCities: http://www.geocities.com/~msleeroush. I'm seriously thinking about changing the msleeroush part to something heart-related.

Really liked the forms you used to bring up the mail...don't have a clue with stuff like that, but am more than willing to put in the time to learn. My site is "evolving" and going towards Cardiomyopathy, arrhythmias and ICDs...because that is what I know best. It will probably eventually lean to women and heart disease, but there will be an open invitation for the guys to join us. The reason for slanting towards women is that very few women realize how serious heart disease can be--and that it is the number one killer of women.

Please let me have your thoughts...take a look at my site...and eventually the graphics, too, will be changed--am working on a new set now.

Thanks for your reply, and hope we can help each other.

Best regards,

Lee

LeeRoush@aol.com

Received: April 9, 1999

(BB#078) Peripartum Cardiomyopathy Support Group

Hi! My name is Kim and I was diagnosed with Peripartum Cardiomyopathy in August of 1998. My EF at the time was 10-15%. My baby is now 9 months old and my EF has improved to 40%. I am being maintained on Vasotec, Coreg, and aspirin therapy. I have successfully gone off of diuretic therapy and Digoxin without any complications. I have created a web site support group for women with PPCM. It can be accessed by http://meltingpot.fortunecity.com/malaysia/375/index.html
["Welcome to the Peripartum Cardiomyopathy Support Group"]

Have a great day!

Kim Sebastian

Lalakimmie@aol.com

Received: April 5, 1999

(BB#077) What the ef is EF?

My husband was just diagnosed yesterday with dilated cardiomyopathy. He is 52, had 2 heart attacks four years ago but the doctor feels that these two conditions are unrelated. His heart attacks were believed to have been causes by severe artery spasm. Now, he is told his EF is 28% and I was hoping that someone could explain what this EF really means in plain language to me. It sounds like people have had success on meds and this is good to hear. He also had a slight stroke in November (TIA). I was told his EF would not improve but from the sounds of it, a lot of the people on this site do have improved EF?! Thanks for the help. Oh, one more thing.. should I have my two teenage daughters checked out for any heart problems? Thanks.

Barb

gandolf@execulink.com

Received: April 3, 1999

(BB#076) Familial (idiopathic) Dilated Cardiomyopathy

I just read some of the messages and I think the bulletin board is a great idea to keep in touch with others who have been affected by DCM. As for me, my younger brother died last October (age 33) and when an autopsy was done, the results were--dilated cardiomyopathy...he had NOT complained of any symptoms and led a very active lifestyle. It was quite a shock to our family because my father died 5 years ago, and one of the causes of death was idiopathic cardiomyopathy. I have since heard that there may be a genetic component to this devastating disease. My sister and I are awaiting appointments with a cardiologist for echocardiograms as are our children. If anyone can give me more information on this disease or some direction to take on the net in my search, I would sincerely appreciate it.

Peace,

Mare:)

nona42@yahoo.com

Received: April 3, 1999

(BB#075) Got stats?

I'm loking for information. My mom, (73 yo, 5' 3" 175 lb.) was just diagnosed with idiopathic dialated cardiomyopathy. Actually she was diagnosed a year ago, but waited until now to let me know. Can anyone tell me statistics on prognosis? How about a percentage of patients who's hearts return to a normal size. She is pretty much asymptomatic, maybe a gradual increase in fatigue, shortness of breath after exercise, and peripheral edema after traveling. Iwould appreciate hearing from anyone. Also is there any suggestions on reading, research or other info sources? Thank you in advance,

Jim

jimcwilson@hotmail.com

Received: March 30, 1999

(BB#074) MONOPRIL IS A GREAT MEDICINE... but worried

HELLO MY NAME IS SUSAN SHIFFLETT, I LIVE IN THE STATE OF VIRGINIA. I AM A 34 YEAR OLD FEMALE, OTHER WISE HAVE BEEN A HEALTH FEMALE ALL MY LIFE.

IN 1995 DURING A MY LAST PREGNANCY I DEVELOPED A HEART CONDITION CALLED CARDIOMYOPATH. MY LEFT VENTRUCAL( PLEASE EXCUSE MY SPELLING) HAD ENLARGED.AND THAT THE BLOOD FLOW WASN'T LIKE A NORMAL HEART SHOULD BE. I HAD TO HAVE MY DELIVERY INDUCED 4 WEEKS EARLIER THAT WHEN I WAS SUPPOSE TO , I HAD ONLY PROBLEMS WITH MY BLOOD PREASURE, BUT BECAUSE I WANTED TO NURSE THE BABY THEY WAITED TO PUT ME ON ANY MEDICATIONS, AFTER STARTING TO HAVE HEART FAILUER(?) THEY PUT ME ON MONPRIL10MG, THAT WAS TO STRENGHTEN MY HEART AND CONTOL THE BLOOD PREASUER.

NOW AFTER BEING ON THE MEDICATION FOR TWO YEARS I AM AGIAN STARTING TO HAVE PROBLEMS WITH CHEST PAIN AND SOB, THEY ARE NOW SAING THAT I NEED TO START TAKING 20 MG THEN GRADUALLY INCREASE IT TO 40 MG A DAY, THIS WILL LOWER MY BLOOD PREASUER AND LOWER THE HEART RATE SO THAT IT WON'T OVER WORK IT'S SELF.

THE DOCTOR TOLSD ME TODAY TEN YEARS AGO SOME ONE WITH MY CONDTION WOULDN'T LIVE ANOTHER 10 YEARS, BUT BECAUSE OF THE NEW MEDICATIONS ON THE MARKET, AND BECAUSE MONOPRIL IS A GREAT MEDICINE HE SAYS THAT I MAY LIVE A ADDITIONAL 20 TO 30 YEARS. I WORRY EVERY DAY BECAUSE OF MY CHILDREN AND WHAT THE NEXT DAY MAY BE LIKE. AS THE DOCTOR SAID THAT I NEED TO TAKE MY MEDS LIKE I AM SUPPOSE TO, AND KNOW THAT I WILL BE TAKING THIS MEDICATION FOR THE REST OF MY LIFE-WHAT EVER THAT TIME FRAME MAY BE.

THANK YOU

SUSAN SHIFFLETT ["JULIA BARKER" (???)]

BRYANB@CFW.COM

Received: March 30, 1999

(BB#073) My outlook is good

My name is Karen and on October 18, out of the blue I ended up in the emergency room with pulmonary edema. Keeping my story short, I was diagnosed with dilated cardiomyopathy, possibly caused from a viral infection. Echocardiogram showed my heart muscle working only at 15%, a shock to say the least. I doctor at the NY Heart Center in Syracuse. I am doing pretty well.

In January I went back to my part time job very gradually. I am lucky to have a boss that allows me to come whenever and put in as much time as I can and leave when I want. I also am exercising regular at a rehab exercise facility that is part of the local hospital. I began exercising in February. I could only do 2 minutes on the tread mill and on a bike. Now I am doing 8 minutes on 3 types of equipment, 5 on another and 4 on an arm exercise bike. I find the arm exercises most difficult. Before I became ill I walked 2 miles 5 days a week.

I have no family history of this disease. I also had my yearly check up and there were no signs of this disease until October 18, 1998. I was started on digoxin, and lasix at the hospital, a week after discharge my primary physician, thank the Lord got me an appointment with my present cardiologist (I had been told that I was completely disabled) and he told me that I could do anything, but to not overdo, and my body definitely tells me when it's time to take a break. He put me on vasotec and upped that until I take 20mg 2xdaily. I had a heart catherization to be sure that my arteries are okay and fortunately they are. I take coumadin (4mg), digoxin, vasotec, and now Coreg (started out low dose and am now taking 25mg 2xdaily), the miracle medicine which will most likely keep me from having to have a heart transplant.

I was tested again in mid February and the heart muscle is still the same at 15%, but I am hoping that in time it will improve. I tire easily but am able to do most everything that I did prior to this happening. My outlook is good, and my father God, and brother Jesus have been with me all the way.

By the way I am 59 and am the grandmother of 8 with one more on the way. I am very fortunate that I have no other medical problems and feel that this is much in my favor. I plan to attend all my grandchildren's weddings and lead a very active and as normal a life as I can. Exercise and a good diet plus the medicines I am taking, not getting over tired are the things I concentrate on now, everything else takes second place.

Karen["John Galeotti Jr." (???)]

jgaleotti@mail.odyssey.net

Received: March 30, 1999

(BB#072) dilated idiopathic cardiomyopathy

Hi,

Just found your page and it is interesting, just wanted to tell you there are more of out here. Stats: 52, 6' 5",impanted defibrilator, ejection fraction of +/- 18, oh wellllll

Rod Everling

tallguy65@hotmail.com

Received: March 28, 1999

(BB#071) Hopeful About Coreg

I am a 47 year old woman with a husband and two daughters. One 27 years and the other will be 4 years in June. I was diagnosed with Cardiomyopathy "Congestive Heart Failure" Aug. 1998. I was told I needed a heart transplant. I was started on Coreg in Sept."98. I was told Coreg had the ability to reverse the damage done by cardiomyopathy. However, there isn't any particular profile of the type of people who will and will not respond to Coreg. I have responded quite well, although at the onset the doses were making me feel very ill and almost "crazy" out of sorts. I was started on a very low dose; .325mg twice a day and slowly stepped up to 25mg twice a day. I feel alright most days, if I don't over do it. I try my best to avoid stress. Good stress and bad stress and salt! I am coping and so hopeful. Stay strong, expect a healing and pray for holy spirit to help you through. Pray for the doctors too. God can do more than we can conceive. Even tho [TRUNCATED]

Doris

RoughGoing@AOL.COM

Received: March 18, 1999

(BB#070) A woman's story

I was diagnosed with Cardiomyopathy "Congestive Heart Failure" Aug. 1998. I am a 47 year old woman with two children. Both girls, one 27 years and the other will be 4 years old in June, my "menopause baby".

Since my diagnosis, I have been prescribed Vasotec to treat my High Blood Pressure. I've had HBP for nearly four years now. I was taking Aldomet because I was pregnant when I was diagnosed hypertensive. Since the CHF I was told it's better to take Vasotec for my HBP. I also take Coreg, and Coumadin(a blood thinner). I also take Furosemide (a water pill) and K-DUR (a potassium pill) although not every day, only as needed. I was told by my doctor that in some people Coreg has the ability to stop and in some cases reverse the damage done by the cardiomyopathy. However, there is no particular profile of the people it (Coreg) will or will not help to the degree of reversal of the disease. I have responded well to the Coreg. My doctor started me on very low doses, .325 mg a day and slowly took me up to 25mg twice a day. I was told that my cardiomyopathy was caused by a virus. It could have been something as simple as a cold. Except once the virus was in my body, it attacked my heart. I was told my heart was working at 10% of its capacity and that I needed a heart transplant.

I am coping! I pray that the medication continues to help me and reverse the damage. I pray that I am able to endure until there is a permanent remedy for people like us. Avoid stress and salt! Trust God to help us because he cares for us.

Doris

RoughGoing@AOL.COM

Received: March 17, 1999

(BB#069) Awaiting muggergram results... with questions

Seth,

Have been diagnosed last year as having dilated cadiomyopathy. Have gone through various tests which all prove that my left side is enlarged and left bundle branch blocked. I am awaiting for results of a muggergram which cannot be too serious as I have not been called forward to see my heart specialist as my next appointment is not until the end of April. The consultant or registrar cannot give me clear lines of how I contracted this complaint, when I say that I have never smoked, this seems to leave them clutching for ideas. They are now saying that I enjoyed myself too much when I was in the forces, but I spent about as much time in the mess bar as my other colleges. Can anyone in your group enlighten me as to what and how this condition is going to effect me. I have just turned 51 in January and would like to stay around to collect my full forces pension.

Kindest regards

Bill

WRober3330@aol.com

Received: March 10, 1999

(BB#068) Weak heart = cardiomyopathy???

Sylviane

My dad has a weakened heart beating at 35 per cent capacity. The muscle has weakened and he had a defibrillator installed to correct his ventricular tachycardia. He is 75. Does he have cardiomyopathy or is this classified as something else? I didn't see anything like his symptoms at the web site.

Am I in the right place? Also is the lack of communication on cardiomyopathy common to my dad's condition?

Ken

katurner@hom.net

Received: Feb. 19, 1999

(BB#067) Support Groups???

Please let me know if you know of any support groups for families of people diagnosed with d.c. My husband who is 29 years old was diagnosed in June with d.c. and chf, and pulmonary hypertension. Please contact me if you can help. My name is Pam and I can be reached by e-mail at pamdavy accessatc.net. Thank you so much. GBY.

Pam

pamdavy@accessatc.net

Received: Feb. 18, 1999

(BB#066) Diagnosis Plus Ten: Doing Okay

I was diagnosed with idiopathic cardiomyopathy almost 10 years ago with an EF rate of 30%. I pretty much spent that year waiting to die or get a heart transplant. Well, here I am with the same diagnosis. I am on medication, lanoxin, and monopril for taking stress off the heart muscle. I had to have a morphine implant for severe nerve damage in my spine put in a year ago. My heart has not worsened and I am happy with the quality of my life. My heart would be considered 50% damaged. I know after a long time of not living (waiting to die) I began to grow spiritually. I am now at peace and happy. I have surprised my doctor's with my heart's continued function and not worsening. I am thankful for the people that helped me with trust and faith in God that no matter what, I would be alright. I now have 3 grandchildren and am 51. I live each day to it's fullest and do more now than I did before.

Wbtklt@aol.com

Received: Feb. 12, 1999

(BB#065) Familial DMC

Hi. This is Jen. I am 31 and have had DMC for 2-2 1/2 years. I am currently on 10 mg of Accupril once daily. My EJ is about 45%. I have been feeling generally well. Recently I have been experiencing extra beats and a fullness in my chest when I wake up in the morning(I will see my cardiologist soon).My father passed away from DMC 11 years ago. His sister and mother both have pace makers. Another one of his sister was recently diagnosed with DMC..Although I don't know her current status. The only advice I can give is to get alot of sleep, avoid salt and stress! I have tried exercise but find it VERY DIFFICULT! I was happy to find you guys! But I also wish there was no need for this site! Good luck to all...Keep well..I'll keep checking for chat times. Hope to speak to someone soon.

Jen Ross

jeniko@sprint.ca

Received: Feb. 7, 1999

(BB#064) Priscilla Nancy (Collihole) Case 27/9/69 - 6/8/94

It is four and a half years since my niece Priscilla died. She was diagnosed with Cardiomyopathy six days after the birth of her first child. The hospital discharged her two days previous, but she was so tired and her lips were turning blue. She was admitted back to hospital where she fought for life for five weeks. In that time she had a curette, a hysterectomy which led to fluid on the lungs. She was place in a medical controlled coma and on a life support machine. A balloon catheter was inserted to help her heart but her body was in shut down mode as the liver and kidneys packed up and her legs were dying. The team suggested amputation of her legs, to do that they would have to take out the catheter and she was too weak to do that. Priscilla died with her five week old baby boy in her arms on 6th August 1994 at the young age of 24. We sang "Love is all around us" by Wet, Wet,Wet as she left us.

I don't know what type of Cardiomyopathy she had. But my father died suddenly of heart attack at 68yrs after being treated for Emphesema and since doing my family history have found out that his Grandfather died of Syncope. I need to research this more and obtain information. Priscilla was the first of eight grandchildren. There are now four in the next generation too.

Please contact me with any information.

Lorraine (mother of 3, Australia)

zak@hitech.net.au

Received: Feb. 6, 1999

(BB#063) CHF-and-COPD

I am a 62 yr old, 6 ft--220# (BMI=31), non-smoking/non-drinking DWM. I have:

Diagnosed 1977:

COPD: Chronic Obstructive Pulmonary Disease

Emphysema (Diffused-Obstruction of the small airways)

Asthma (Intrinsic-No allergies)

Diagnosed Dec, 1995:

CHF: Congestive Heart Failure

Cardiomyopathy (Idiopathic Dilated)

Diagnosed: Dec, 1995: Rectus Diastasis: (with a Significant Stomach distension)

I have been hospitalized 16 times (for 10-to-12 days at a time) with the COPD. With most of my Admissions being under Emergency conditions!
A Full Pulmonary Function Test showed:
... Severe obstructive lung defect... decrease in flow rate at peak flow at 50% & 75% on the flow volume curve. ...increased lung defect is confirmed by an increased RV. ...Comparison of FRC

Roy

rbrandt@pacbell.net

Received: Feb. 4, 1999

(BB#062) peripartum cardiomyopathy

I was diagosed with ppc in July after giving birth by C-section. I had an E.F. of 25%. I was admitted into hospital and ran dobutamine drip for 2 months. I also am on coreg, cozaar, bumex, lanoxin, and potasium. My last MUGA (done in november) showed an increase to 57%. I am still taking the oral medications but have d.c. the dobutamine treatments. The one outstanding reprocussion from this amazing disease is loss of short term memory. I do not know if this is from medications or loss of circulation at the time of lowered heart ejection. I would like to hear from other women who have had this condition come into their lives, and how they are coping.

Marie

Rheeree@aol.com

Received: Feb. 4, 1999

(BB#061) Need information

diagnosed spring l996. Found by chance during normal yearly exam - ecg presented with left bundle branch block - followed by stress tests, echocardiograms, muga scan, cardiac cath. Was asymptomatic yet ef on muga was 29%.Heart enlarged.Started on digoxin and capoten (built to dose of 50mg three times a day). Ef year later was 47%. Heart size to normal Shortly, thereafter, diagnosed with RA. Some speculation that illness late winter l995 may have been virus that precipitated both. Last several tests have shown deterioration with ef back down to 29% this past November and heart slightly enlarged. Am currently on increasing dose of Coreg building to 25mg twice daily. No speculation from physicians on why this has happened. Still feel pretty good however can't help but really worry at this point. Am relatively new to computers and have just been searching for information about condition when found this site. Anybody have any good information[?]

Marcy

marcysm@wserv.com

Received: Feb. 2, 1999

(BB#060) Facing transplant: what are the odds?

Hi,

My name is Chuck Coleman and I have DCM. My Dr. told me Friday he might get me in a heart transplant program. My question is how much is the normal transplant costing? and what are the odds you will live long enough to receive one?

CHUCK COLEMAN

k5lzo@symet.net

Received: Feb. 1, 1999

(BB#059) Idiopathic dilated cardiomyopathy

Our son, age 12, was recently diagnosis with DC. He has complained of fatigue and difficulty with concentration. He has little memory for new information. Do others notice this?

Linda Monserrate

monserrate-ia-juno.com

Received: Jan. 30, 1999

(BB#058) Monster in the heart

I am 22 years old. I was diagnosed with DCM in October 1997, just two weeks after I was married. I never had any symptoms of this disease. I was diagnosed because of a physical I had taken for a new job. I still have no major symptoms other than occasional swelling of the ankles and an arrythmia that occurs rarely. My EJF is 35%. I am currently on coreg, however, my doctors are considering switching the medication because there has been no improvement. I would love to chat with anyone who has DCM. It would be nice to have a friend that knows and understands the monster lurking in my heart.

chas

chasm2@hotmail.com

Received: Jan. 28, 1999

(BB#057) Glad to have found you...

Dear Sylviane,

I, too, have recently (6/98) been diagnosed with Dialated Cardiomyapathy. On my birthday 6/22 I got flu-like symptoms and very dizzy. Had to lie down. I suspected more than just flu and they called an ambulance. My tests showed 40% LVEF. I also experience flutters frequently. Without the "flutters" I would not know I had a heart problem! I am 50, in relatively good shape and jog 3 miles every other day! The Dr. put me on a Beta-Blocker (Toprol) and I also take CoQ-10 (240MG daily), Hawthorne Berries, Taurine, Calcium-magnesium-zinc compound, asperine and Vitamin C and E. Last weeks Echo showed an improvement in overal condition of the heart and a 50% EF! The Docs seemed rather pleased!

There is some good stuff published on CoQ-10 out there (one by Dr. Stephen T. Sinatra, Coenzyme Q10 and the Heart, Keats Publishing, New Canaan, CN.) Though I take all this stuff, I can't be sure if it's doing any good. But I seemed to improve and I do feel good. I'll stay on the regime and continue to enjoy life. My perspective changed with this disease and I think I'm enjoying life more than ever and I am optimistic that I'll have a "normal" lifespan and an active one. Attitude seems the only thing we really control. Glad to be a part of your Team. Best,

Jack K Arns

ARNS@neworld.net

Received: Jan. 26, 1999

(BB#056) Just another statistic

Wonderful to find you all. I was diagnosed as having dcm after going into hospital with congestive heart failure in August `98. It was a shock, and I was very frightened about `sudden death` which I kept reading about! I am not familiar with all the terminology as I live in the UK, what is an EF? - another one for my consultant.

I am on medication, ace inhibitors, digoxin, warfarin and diuretics - and am pleased to say I am feeling stronger now. I have been told that my condition requires a transplant, there is 50% damage, and my life expectancy without one is less than 5 years. It has been difficult coming to terms with the information, but who says I have to be a statistic?

I too would like to `chat`, exchange experiences, hopes and fears.

Andbren2@aol.com

Received: Jan. 26, 1999

(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