Heartmates

Rhoda Levin heartmates@aol.com Sep 25, 1997 11:11 pm
Home Page: http://www.heartmates.com/

WELCOME to each and all of you. With the opening of our updated site on the web it is now possible for cardiac health professionals and cardiac families to communicate from anywhere in the world. We hope that this will be useful (practical and inspiring) and best of all it is a small step to help people connect and combat the unnecessary pain of isolation. BEST WISHES FOR A FULL RECOVERY TO ALL!

Nancy NanT8@aol.com Sep 07, 1997 06:54 am
Home Page: http://www.members.com/NanT8

I am trying to find some interesting articles about Drs Blalock and Taussig and possibly the Vet Tech named Tom that helped develope the surgery for blue babies back in the 40's (see web page) I would like to add some links

carol Sep 08, 1997 10:56 pm

I would be interested in peoples comments on short term memory loss. My dad had aborted cardiac arrest, coma for about a day and a half, and now some memory loss. CPR was started immediately, so oxygen loss was minimal. Any suggestions on what we can do to help him along would be helpful. Physically he is fine now and has a defibrilator.

marilyn mheltzer@paulbunyan.net Sep 28, 1997 08:14 pm

I'm curious as to just how this works. I'm a new "heartmate". Jim had bypass surgery on 9/4 (and how many weeks, months will it be until I no longer mark every day back to that one?)...and I'm new at the internet, too...so, just how will communications be went out and answered? I'm in northern MN, far from Abbot-Northwestern in Mpls, coping, coping. Thanks. (Rhoda, your book is great! My copy is already dog-earred. Reminds me of my copy of Dr. Spock, lo those many years ago, when the pages on "crying" and "toilet training" almost fell out of the book before the third child was successfully launched.

Judy judyb@minn.net Oct 04, 1997 12:29 pm

I have been divorced from my husband, a heart patient, for almost 20 years. Recently, he had another heart attack, and I found myself sobbing in anger and sadness while washing windows! A friend of mine, who is married to a heart patient, read "Heartmates" and referred me to your web site. Your materials helped me understand that even former spouses are affected by a major health event. You know, we are still family, particularly when children and grandchildren are affected. It would be interesting to hear from former spouses and how they have reacted to this issue.

Tygerzz tygerzz@geocities.com Oct 23, 1997 03:07 am
Home Page: http://www.geocities.com/HotSprings/Spa/2439

Hi my name is Dj. I have a medical page and want to find more links on heart support, information, treatment, personal pages made by heart patients. I have something doc's call heart syndrome X. I need more support link for heart support. Also does anyone know if there is any irc chat channels for cardiac. I know how to start one if anyone is interested in starting a real time chat channel.

Debbie Brown rrzh67b@prodigy.com Oct 24, 1997 05:31 pm

Rhoda asked if I would place this reply I sent to judyb on the web site, so here it is. "Years ago, my ex-husband and the father of my children had a heart attack at the age of 34. I was really affected also, and had trouble understanding why, because we were not on good terms. After thinking about it a long time, I began to understand that it brought home my own mortality. Now I am much older and wiser. My second husband, who I love dearly, is afflicted with cardiomyopathy. My feelings are very different this time. I am already aware of my own mortality, I just want some more time to enjoy a really good marriage."

Rhoda Levin heartmates@outtech.com Nov 13, 1997 06:08 pm

Hello to heartmates -- Again this week I received a message from a young heartmate, a woman in her early thirties, who wanted to know if I could put her in touch with other women (or men) who are heartmates at such a young age. This woman has two small children and has many concerns about the fear of being a single parent, and about all the changes happening in her life. SO I AM PUTTING A CALL TO YOUNG HEARTMATES. If you contact Heartmates, or put an entry on this Interactive Connections indicating that you have similar concerns, I can put you in touch with each other. Thanks, and to all of us, young, not so young, and aging, my best for healing and recovery.

Charles Taylor cltaylor@swbell.net Dec 17, 1997 03:23 pm

THE PATIENT: 48 year old while male, 6' tall and weighs 195lbs and lives in Dallas, Texas THE MEDICAL HISTORY/CONDITION: Idiopathic Dilated Cardiomyopathy (Dr. suspects viral caused) which was originally diagnosed in Feb 95 with 40% Ejection Fraction. Was also diagnosed as having Crohn's Disease at same time. Diagnosis made a Mayo Clinic in Rochester, MN. Prescribed 10 mg Lisinopril and a Beta Blocker (I have forgotten dosage). June 95: Echocardiogram shows EJ at 55%. Local Doctor takes me off of all medicines. October 95: Sudden Death episode in restaurant. Was dead 15-20 minutes with CPR performed by nurses who were also in restaurant. Before leaving hospital an ICD was implanted and testing showed an EF of 35%. Prescribed 10mg of Zestril (Lisinopril). June 96: EF 45% Sept. 96: Sudden Death aborted by ICD Nov 96: Holter monitor reports 1,000+ PVC's and 3 brief episodes of V-Tach. March 97: Atrial Fibrillation for 60+ hours leading into Ventricular Fibrillation aborted by ICD. January 98: Scheduled stress echo test. THE QUESTIONS While I am typically a very positive person, I find myself in need of information which will allow me the opportunity to carefully weigh all of the relevant information about my illness. These questions, therefore, purposely exclude the possibilities of a heart transplant or other new surgery techniques that seem to offer a greater chance of extending life. (1) Fairly extensive Internet and library research in Dilated Cardiomyopathy reveals studies that indicate that 70-75%+ die within 5 years. What are the death rates for the next five years and ten years? (2) My ICD fairly well rules out death by Cardiac Arrest/Ventricular Fibrillation/Sudden Death. Does this mean that if I fall into the statistical percentage of those who die that it will be as a result of heart failure? (3) With the understanding that heart failure can be rather slow or swift in its failing process, what are the typical problems associated with congestive heart failure (organ failure, etc…)?

Debbie Brown rrzh67b@prodigy.com Dec 22, 1997 09:00 pm

Charles, I think perhaps you are asking questions that no one can really answer, how and when will I die? You certainly have a dramatic history and it must be very difficult for you to keep a positive attitude. Those of us who live with a heart patient knows that each day is a blessing to be cherished because who knows how many more we will have. As I make plans and celebrate this Christmas with my husband I can't help but wonder if it will be our last together. So I smile, try to make this the best one of all for him and his children and keep inside my fears that next year I will have to go on without him. No one can give you a precise estimate of the prognosis of your disease, only share with you our feelings, and hope that each day for you is full of love and joy.

Diane Prindi@aol.com Dec 28, 1997 11:10 pm

I am also interested in resources for addressing short term memory loss following cardiac arrest. Although my father began receiving CPR immediately, he was without a regular heartbeat for approximately 15-20 minutes. He had to be shocked 3 times by the EMT's before his heart began beating normally and has now had bypass surgery. His long term memory seems to be fine, but his short term memory seems to be affected. I am wondering if anyone has had a similar experience with some positive results and I am looking for resources on what the family might do to help this situation.

Rhoda Levin heartmates@outtech.com Dec 29, 1997 01:14 pm
Home Page: http://www.heartmates.com

The holidays are difficult for most people, but families dealing with life-threatening illness seem more deeply affected. We are perhaps more awake -- more aware of our fears [of anticipated loss], and more aware of our gratitude [for the preciousness of the present moment]. I wish that I had answers, especially for the new December questions I see Charles and Diane presenting; but Heartmates is not a "medical" website, rather a family (psycho-social-spiritual) site - a place to connect, to share questions and feelings, concerns and issues that have even fewer answers than physical medicine can provide. So please, keep connecting here AND when you have medical questions, look for medical sites for answers. What we can provide at the Heartmates site are our own experiences, and feelings. I leave you with a recently heard phrase that has been meaningful for me ... GRATITUDE IN THE MORNING, AND FORGIVENESS AT NIGHT. To all of you struggling with questions of uncertainty, transition, and change, I wish you a peaceful new year.

Brenna BHBWAY@aol.com Dec 31, 1997 11:21 am

I am definitely interested in connecting with another young heartmate. I am 36. My husband (41) had bypass surgery 7 weeks ago. His first problem was a heart attack in Dec of 96. He was hospitalized until Christmas day last year. It has been a long year of hospital visits, several angio- plasties and finally the surgery. I have four boys, ages 12, 11 and twins 7 1/2. Most people I have been able to talk with never experienced this as a young adult. They are all in their 60s or 70s and really have nothing to say that can help those of us who are trying to keep all the homefires burning and care for our mates and ourselves all at the same time. It is difficult and I know that I would benefit from communicating with another young wife who is experiencing similar circumstances. Thanks. By the way, your book was a great help. I read it last December and again this year.

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1997 | 1998 | 1999 | 2000 Jan - Jun | 2000 July - Dec
2001 Jan - Jun | 2001 Jul - Dec | 2002 Jan - June | 2002 July - Dec
2003 Jan-June | 2003 July-Dec