The paperwork never ends The Archives
April 1-15, 2001 Archive Index CHFpatients.com

Charles K 4-2     sure is frustrating
 
Karen 4-2     glucophage and heart failure
 
Ginger's 4-2 reply to Ken N's 3-31     famous people with heart failure
 
Jon 4-2     about what you read,...
 
Stephanie's 4-2 reply to Charles K's 4-2     over doing it, SSD
 
Jon 4-2     the date on that Intelihealth bulletin
 
Ginger's 4-2 reply to Karen's 4-2     glucophage & CHF, and to Charles
 
Judith H 4-3     isn't this just CHF fatigue?
 
Carol O's 4-3 reply to Lil's 3-31     exercise, EF & more
 
Jon 4-3     page updates, Intelihealth, need your opinions
 
Lee R 4-3     could this be from stopping digoxin?
 
Julie 4-3     thank you, personal changes disturbing
 
Jon's 4-3 reply to Julie's 4-3     what disturbs you?
 
Joe L 4-3     seeking normal pressure numbers & more
 
Jan R 4-3     thanks, seek ideas on forming support group
 
Jon's 4-3 reply to Joe L's 4-3     right ventricular systolic pressure
 
Ben B's 4-3 reply to Jan R's 4-3     forming support group & more
 
Ed 4-3     NSAIDs, CHF & aspirin
 
Jon's 4-3 reply to Ed's 4-3     NSAIDs, CHF & aspirin
 
Julie's 4-3 reply to Jon's 4-3     CHF, emotions, coping
 
Lee R's 4-3 reply to Jan R's 4-3     forming a local support group
 
Cristina's 4-3 reply to Judith's 4-3     extreme tiredness, BP, doctors & more
 
Jon's 4-3 reply to Julie's 4-3     CHF, emotions, coping
 
Thelma's 4-4 reply to Judith's 4-3     hitting the wall, muscle aches
 
Vicki 4-4     heart rate and blood pressure - questions
 
Donna Z's 4-4 reply to Jan R's 4-3     starting local CHF support group
 
Jon's 4-4 reply to Donna Z's 4-4     starting local CHF support group
 
Ginger's 4-4 reply to Julie's 4-3     dealing with CHF diagnosis & more
 
Tony's 4-4 reply to Lee R's 4-3     effects of stopping Lanoxin
 
Jon's 4-4 reply to Lee R's 4-3     effects of stopping Lanoxin
 
Mike Joye's 4-4 reply to Julie's 4-3     coping with CHF
 
Jan S 4-4     antidepressants & heart disease
 
William B's 4-4 reply to Jon's 4-3     links in new window, Coreg, dox & more
 
Brandy L 4-5     Coreg affecting BP and pulse
 
Sylvia E's 4-5 reply to William B's 4-4     Coreg experience
 
Donna Z's 4-5 reply to Jon's 4-4     starting local support groups
 
Jon's 4-5 reply to Donna Z's 4-5     starting local support groups
 
Joe S 4-5     what to do about rising BP?
 
Stephanie's 4-5 reply to Vicki's 4-4     Coreg experience
 
Jon 4-5     page updates
 
Charles K 4-6     chest, neck & shoulder pain questions
 
Ben 4-6     Lanoxin dose question, CoQ10 & more
 
Donna Z's 4-6 reply to Jon's 4-5     local support groups
 
Jon's 4-6 reply to Donna Z's 4-6     I must have missed something
 
Ginger's 4-6 reply to Joe S' 4-5     sweet-n-low, support groups & more
 
Jan R's 4-6 reply to Donna Z's 4-5     support groups & more
 
Ann C 4-6     road to transplant, prayer request
 
William B 4-6     sweet-n-lo
 
Bill D's 4-6 reply to Charles K's 4-6     those pains could signal a heart attack
 
Bill D's 4-6 reply to Donna Z's 4-5     non-profit organizations
 
Vee 4-6     support group ideas
 
Jon's 4-6 reply to Vee's 4-6     support groups, links, site numbers
 
Randy B's 4-6 reply to Ann C's 4-6     transplant support
 
Jon 4-7     CHF doctors exams info
 
Leland Y 4-7     informative web site Urls
 
Sharon P 4-7     local support groups
 
Jon 4-7     local support groups
 
Donna Z 4-7     local support groups
 
Donna Z 4-7     local support groups
 
Vicki's 4-7 reply to Stephanie's 4-5     the diagnosis-coming-to-grips journey & more
 
Tom W's 4-7 reply to Ginger's 4-6     hey kid!
 
Gino's 4-7 reply to Vicki's 4-4     low BP, high heart rate & more
 
William B 4-7     question - taking Coumadin & aspirin together?
 
Dana J 4-9     update, prayer request
 
Ginger's 4-9 reply to Tom W's 4-7     support groups, to Gino, & more
 
Julie's 4-9 reply to Vicki's 4-7     you're not alone - my experience
 
Julie's 4-9 reply to William's 4-7     taking aspirin with Coumadin - temporarily
 
Christy P's 4-9 reply to William's 4-7     taking aspirin with Coumadin - temporarily
 
Karen K's 4-9 reply to Ben's 4-6     CoQ10 & healthy gums, flaxseed, prayer request & more
 
Tracey C 4-9     can we eat sushi?
 
Ernest D's 4-9 reply to William B's 4-7     aspirin plus Coumadin experience
 
Mike W's 4-9 reply to Jon's 4-6     web site stats
 
Marsha H 4-9     when will MyoVive be available again?
 
Bev T 4-9     does anyone hear their heart in their ear?
 
Jon 4-9     prayer request
 
Wendy B 4-9     can't find low sodium stuff - anyone else?
 
Doug B 4-9     questions - have low EF but feel okay?
 
Jack 4-9     to Tracey and Ben
 
Elizabeth H 4-10     does anyone get tingling arms & legs?
 
Fred D's 4-10 reply to Bev T's 4-9     hearing heart beat in ear
 
Joe S' 4-10 reply to Bev T's 4-9     hearing heart beat in ear
 
Ben B's 4-10 reply to Doug B's 4-9     EF
 
Mike J 4-10     several heart-related questions
 
Jon's 4-10 reply to Mike J's 4-10     here's a start
 
Heather K's 4-10 reply to Ernest D's 3-24     what is class 7 on transplant list?
 
Mike J's 4-10 reply to Jon's 4-10     thanks for the info & more
 
Tracey C's 4-10 reply to Jack's 4-9     thanks for the info, another question
 
Yvette 4-10     dizziness questions & more
 
Lee R 4-10     heart attacks with no chest pain
 
Vee's 4-11 reply to Doug's 4-9     EF versus how we feel, prognosis & more
 
Vicki's 4-11 reply to Gino's 4-7     am doing better, thanks, Coreg question
 
Vicki's 4-11 reply to Julie's 4-9     being too tired to work
 
Stephanie 4-11     questions about weather & altitude & CHF
 
Donna H 4-11     intro
 
Jack's 4-11 reply to Tracey C's 4-10     sushi bar ginger & more
 
Judy 4-11     intro
 
Ginger's 4-11 reply to Vee's 4-11     heart testing intervals
 
Gus R's 4-11 reply to Yvette's 4-10     I have similar episodes
 
Linda S' 4-11 reply to Yvette's 4-10     I have similar episodes
 
Bill Moore's 4-11 reply to Bev T's 4-9     hearing your heart beat in ear, swooshing sounds
 
Wendy B's 4-11 reply to Stephanie's 4-11     weather and CHF
 
Karen K 4-11     potassium content in foods & more
 
Jack's 4-12 reply to Karen K's 4-11     that nutritional database
 
Cheryl B 4-12     obsrtuctive hypertrophic cardiomyopathy
 
Stephanie's 4-12 reply to Gus R's 4-11     that describes it perfectly!
 
Fred D 4-12     Disability, dox & more
 
Joe L 4-12     high diastolic BP, questions, & more
 
Ginger 4-12     keeping the faith, back pain, & more
 
Jon's 4-12 reply to Ginger's 4-12     back pain and children
 
Jack 4-13     hey Ginger!
 
Ginger's 4-13 reply to Jon's 4-12     bad backs and children, thanks
 
Joe S' 4-13 reply to Joe L's 4-12     BP, meds, chiropractors & a question
 
Karen K's 4-13 reply to Ginger's 4-12     chronic back pain
 
Tony's 4-13 reply to Joe L's 4-12     blood pressure
 
Jan R's 4-13 reply to Yvette's 4-10     about those dizzy episodes
 
Bill B 4-13     update, get a CHF specialist
 
Barbara 4-13     seek CHF specialist in Chatham, Ontario & more
 
Jack's 4-13 reply to Tony's 4-13     monitoring blood pressure
 
Robert J 4-13     voice chat room
 
Vee's 4-13 reply to Ginger's 4-12     pain control, CHF tests
 
Vee's 4-13 reply to Joe S' 4-13     stopping blood pressure meds
 
Mary H's 4-14 reply to Ginger' 4-12     back pain, update & more
 
Ben B 4-14     BNP question
 
Ginger's 4-14 reply to Jack's 4-13     also to Vee and Karen, & more
 
William B's 4-14 reply to Jon's 4-12     chiropractors
 
Joe S' 4-14 reply toVee's 4-13     and to Tony
 
Tony's 4-14 reply to Jack's 4-13     and to Joe S
 
Jim H's 4-14 reply to Yvette's 4-10     dizzy spells danger
 
Jim H's 4-14 reply to Cheryl B's 4-12     having hypertrophic cardiomyopathy & more
 
Jim H 4-14     does anyone take Tikosyn/dofetilide?
 
Jan R 4-14     does anyone have painful ectopic beats & more
 
Robert B 4-14     intro
 
Jon 4-14     links note
 
Jon 4-14     page additions & updates
 
Tracey C 4-14     new e-mail address
 
Charles K's 4-14 reply to Jan R's 4-14     chest pains
 
Jon's 4-14 reply to Charles K's 4-14     chest pains
 
Dee L 4-14     pre-transplant questions
 
Jon's 4-14 reply to Dee L's 4-14     cardiopulmonary stress tests & more


Charles K, April 2, 2001 - Hi, I don't know about you guys but my doctor has told me to avoid "if at all possible" lifting anything over 20 lbs. Being that I'm a 33 year old male who has always worked out with weights, this has been hard. My cat weighs almost that much! Over exertion of any kind, be it physical or mental, can hit me like a ton of bricks. The weird thing is that it does not always happen so I think that I'll be alright to do something I'm not supposed to because it was fine the last time but this time it leaves me feeling like a wet noodle. One of the hardest things for me to accept is that I can't do what I used to do or want to do anymore. Even the small things like laundry, grocery shopping and housecleaning have become major projects. Cooking a meal and doing dishes can be a 2-day event. Thanks for letting me rant. the_bohemian@hotmail.com


Karen, April 2, 2001 - Hi, To diabetics, be careful taking glucophage especially if you're in acute CHF. Please visit Clinical Pharmacology Online for more info. We just went through this whole thing and no longer take glucophage. Take care and stay informed. Riverhouse@fx2.com
 
Jon's note: Clinical Pharmacology Online is going pay-for-service later this year. Many drug info links are available through my Links page


Ginger's April 2 reply to Ken N's March 31, 2001 - Hi Ken, Personally I would rather see a web site on notable people who have lived with and had great results living with CHF, and what they did to get those results. But to each their own. Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon, April 2, 2001 - Hi everyone, This is a sort of rambling Jon message, the kind you've all seen before. This one concerns accuracy in media reporting of heart failure treatments. This really blew my mind because it came from the John Hopkins' affiliated online publication Intelihealth. The April 2, 2001 Intelihealth bulletin currently available at www.intelihealth.com/IH/ihtIH/WSIHW000/8059/8011/314764.html is what I address here.
     The bulletin called giving Bosentan a must for CHFers. From that, I asume oral bosentan is meant. However, I am under the impression that such endothelin receptor blockers have only shown promise as IV drugs for treating acute CHF episodes in the hospital. There is only one completed trial of oral bosentan so far - REACH-1 from 1997. It showed liver problems using their dosing schedule. REACH-1 also showed that starting bosentan can worsen heart failure, while long-term bosentan might improve symptoms. That's not exactly a glowing report from a patient standpoint. <g>
     The 2 current trials of this oral endothelin receptor antagonist are ENABLE 1 in Europe and ENABLE 2 in North America. These will be completed next month. At present, out of 750+ participants, 450 ENABLE patients have died or been admitted to the hospital with worsening heart failure so I would say it's too soon to call this drug a must-take for CHFers.
     I freely admit that I have no inside info on this drug or trial but overall I would say that quoting some doctor who thinks all CHFers should take a drug based on these results is premature at best. As recently as December of 2000, reports published in respected medical journals were openly questioning the value of these drugs until more trial results were in. Please note that trials in rats and dogs are still ongoing for endothelin receptor blocker use in CHF. This may not be a ready-for-prime-time class of drugs for daily chronic treatment of CHF.
     The same Intelihealth bulletin also calls Enbrel one of two "biotech blockbusters" for treating CHF. The big TNF blocker trial of etanercept (Enbrel) was halted earlier this year, as announced at the ACC Conference in Orlando last month. The trial was stopped because results never happened in treating CHFers with this class of drug. I am still trying to figure out why a John Hopkins' sponsored publication would then call Enbrel a huge advance in CHF treatment, when the trial failed miserably. I don't get it.
     My point in all this is simply that we must be careful not to believe all that we read, even from prestigious and "respected" sources. Question everything and find 4 or 5 sources to confirm things before jumping for joy. Please. Some new treatments do work and offer a great deal of hope to us. I just want everyone to be careful believing what they read.
     I try very hard on my pages to present only accurate results and treatments, not calling something a great hope unless it really is a great hope! That's why "cutting edge" therapies are not always on my pages. I know about them 99 of 100 times - I just don't put them up until I know enough about them to be sure they are what they claim to be. Often they do not live up to their billing because their billing was never justified in the first place.
     Also, please remember that when the media reports on conferences like the ACC meeting in Orlando last month, they call all the presentations "new." However, I often have had early results on these same therapies on my pages for over a year or more! I am usually waiting for trial results to be finalized before posting the next update on that therapy. Please don't assume something is different than what is reported here just because a media reporter swears it is new. It may only be new to him. I have real problems convincing readers that my articles on CHF pacemakers (ventricular resynchronization) are reporting the same devices presented at the recent ACC meeting. They are the same, honest. <g>
     Last but not least, I depend on my readers for pointers to new therapies! I can't find or cover them all and sometimes I miss a good one. You guys should continue to pour into my Inbox all the heart failure treatment info you find! I just wanted to let everyone know that not all info in print is accurate. It's really been bugging me and I needed to get it off my chest. Jon.


Stephanie's April 2 reply to Charles K's April 2, 2001 - Hi, I know exactly what you're talking about. Yesterday was our first day of nice weather this spring. I spent the afternoon outside doing small tasks. Now today is a bad day. It's so fun when you finally feel good enough to do something. It's really hard for me to know when to stop or how to pace myself.
     I just filed for Social Security Disability. He said that 60% of the applications are denied in my state. Do they think we do this for fun? Thanks for listening, Stephanie. moodystephanie@hotmail.com


Jon, April 2, 2001 - Hi everyone, I'd like to thank the readers who pointed out that although sent by e-mail today, that Intelihealth bulletin is dated March 23. I missed that entirely! However, the ACC Conference was over on March 23, so Intelihealth should have had the halted TNF trial info easily in hand. ;-) Jon.


Ginger's April 2 reply to Karen's April 2, 2001 - Hi, We - meaning my stepdad and I - have been arguing with his doc for a long time about articles in the Reader's Digest and other places about taking glucophage with CHF and also with digoxin. The only answer we ever got from his doc was that it depended on the dosage you take, if it is okay or not. Well, he takes a high dose.
     What was it you found out that convinced your doc to change your med? I would like to know so that maybe we could convince his doc with different info. It has been a big concern of ours for awhile now.
     Charles, I totally understand where you're coming from. We trimmed trees in the back yard and had to carry the trimmings to the front for trash pick up. On Sunday I did fine all day doing it and was surprised that I did as much as I did but then today after just 2 trips I started not feeling so great so I quit. It is so hard to understand our limits when one day you can do something and then the very next day you can't. It's frustrating to say the least. Hang in there. Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Judith H, April 3, 2001 - Hi, I am tired all the time. I can go in a store and wonder if I can make it back to my car. Lifting my arms at times is impossible. I feel like runners must feel when they "hit the wall." My cardiologist does not seem to know what I'm talking about. I am frustrated and depressed most of the time. I do not understand how I feel so bad and she doesn't know what I talking about. This has been going on for 1½ years. Do any of you out there know what I am talking about? judithbug@msn.com
 
Jon's note: Yes, I do. Please try to find a CHF specialist


Carol O's April 3 reply to Lil's March 31, 2001 - Hi Lil, I also agree strongly with the reply from Yvette about the importance of exercise for CHFers. My cardiologist insists that moderate exercise is critical 6 days a week. Exercise will help to improve the function of your lungs, plus it will help you lose weight.
     I wouldn't be too concerned about your lower EF. Try not to let your lower number scare you. In the past 4 years my EF has decreased from 27% to 17% but my cardiologist always tells me that how I feel is a much better indicator of my overall health than any number. You should definitely talk to your doctor about your difficulty breathing. Maybe if they adjusted some of your meds it will help you. Best of luck to you, Carol O. pinevalley@mediaone.net


Jon, April 3, 2001 - Hi everyone, Intelihealth contacted me out of the blue and said that their bulletins are from a news feed and they don't monitor the accuracy of the reporting. I can live with that but wanted to make sure everyone knows that such bulletins are always open to question.
     Also, a week or two ago I changed my method of making links. Clicking a link now opens a new browser window instead of replacing the content in your current browser window. I am very interested in knowing your personal views about whether that was a good idea or not. I wanted to wait until people had a chance to click a few before asking. Please let me know which way you like better and why. Thanks.
     Finally, the following pages on my site have been updated:

  1. Let's Cook
  2. Transplant Stories
  3. Medspeak
  4. Robert J's bio

Jon.


Lee R, April 3, 2001 - Hi Folks, Has anyone been tapered off Lanoxin by their physician? We did it slow and easy but since I've been off the last dose of 0.25mg for about a month now, my exercise tolerance is less and even walking up a flight of stairs has me slightly short of breath. Nothing else in the regimen has changed except that I'm taking naps too! I am considering calling the doctor. Thanks for all your help, past and present. Bestest, Lee. LeeJRoush@msn.com


Julie, April 3, 2001 - Hi, I just wanted to thank Jon for putting up all his pages. I haven't done my biography yet and if I can ever write it without feeling too sorry for myself, I will. I do thank God and my family for their love and patience with me every day. I am really a changed person and sometimes I really don't like the new me very well. Julie. lgoehl@dstream.net


Jon's April 3 reply to Julie's April 3, 2001 - Hi Julie, How have you changed that bothers you? Jon.


Joe L, April 3, 2001 - Hi, Does anyone know what is considered the normal right ventricular systolic pressure range? My research says 15mm Hg - 30mm Hg, and my recent echo showed mine at 42, up from 32 six months ago. The doc said this was still normal. I am somewhat confused by this because I believe this explains my worsening symptoms since peak RV systolic pressure on echo correlates to peak systolic pulmonary artery pressure. It is clear my pressures are rising even without a decrease in EF or an increase in chamber sizes. If anyone has any thoughts I would sure appreciate it. Thanks. JTLucido@aol.com>


Jan R, April 3, 2001 - Hi folks, Thanks to all of you who replied to my earlier plea for positivity. Now I am wholly into this thing and have read Dr. Silver's book and am ready to just do it. I want to start a local support group for CHFers or DCMers but don't know how to get it started. My hospital is too far away to really try there, although I'll try that. Any ideas? Should I just run an ad in our (monthly) newspaper? I have just moved into this town and state and don't really know anyone. Does anybody on this forum live in New England? I need ideas. I need face to face contact even though this forum has saved my sanity! Thanks for any and all ideas, Jan. therowlands@att.net


Jon's April 4 reply to Joe L's April 3, 2001 - Hi Joe, RV systolic pressure of 30mm Hg is high normal, so 42 is definitely high. In my reading, 35mm Hg is high normal in children, though. Pressure of 50mm Hg or higher may be associated with restrictive cardiomyopathy, pulmonary valve stenosis, pulmonary hypertension, or several other problems. Like you said, the RV systolic pressure should equal the pulmonary artery systolic pressure, since during systole, the open pulmonary valve makes the two chambers "one". However, that may not be true if a pulmonary outflow obstruction exists.
     You may be interested in this page from the Merck Manual: www.merck.com/pubs/mmanual/section16/chapter209/209b.htm. The US Department of Transportation requirements for drivers is interesting reading, setting different RVSP limits for different heart conditions, varying from 30 to 50mm Hg. The formulas for figuring echo results can be seen at www2.umdnj.edu/~shindler/eq2.html.
     Normally, I just try to answer questions but I thought some people might be interested in the kind of stuff I run across researching heart questions. ;-) Jon.


Ben B's April 3 reply to Jan R's April 3, 2001 - Hi, I think it is great that you are thinking of forming a support group. Some people don't look beyond how they personally feel from day to day. On the other hand, some folks need to be careful about turning into what I call "professional heart patients." I don't think you risk that since with those small kids you won't have the opportunity but when I see somebody get heart disease and suddenly their e-mail handle changes to "Mr. Cardio Man" or something like that, I think maybe they are defining themselves a little too narrowly. As usual, just my opinion. bdbrinkman@juno.com


Ed, April 3, 2001 - Hello fellow CHFers, In the recent Prevention magazine (May 2000 issue), I came across an interesting article entitled "NSAIDS and Congestive Heart Failure Linked." The article states that in an Australian study of older people they found that those who took NSAIDs were twice as likely to be hospitalized for CHF as those who did not take the drugs. The NSAIDS included regular-strength aspirin and ibuprofen (but not low-dose aspirin, which has been shown to protect the heart). The article further states that NSAID use could speed the development of CHF. The article recommends you check with your doctor before taking high doses of aspirin or other NSAIDs. Acetaminophen (like Tylenol) may be a safer alternative. I take 325mg of aspirin as prescribed by my CHF specialist. I wonder if a baby aspirin would provide the same benefit at a lower dose. I guess I'll be asking the question at my next visit with my specialist. Take care, Ed. emaildolphin@yahoo.com


Jon's April 3 reply to Ed's April 3, 2001 - Hi Ed, A baby aspirin is actually the size recommended for heart failure patients at mild risk for stroke. Those who have no independent risk factors (heart failure is not a risk factor for stroke) don't need to take aspirin. My CHF doc told me to stop taking it years ago and I did. So far, so good. ;-)
     PS. That study is summarized at Heartbytes. Jon.


Julie's April 3 reply to Jon's April 3, 2001 - Hi Jon, This is hard to explain but I have become selfish, self concerning, and feeling sorry for myself instead of playing the hand I was dealt. I also am so emotional. I never was before. I could always try to help my friends and family with their problems but now I just cry whenever someone shows concern. I've been praying for acceptance of this illness but I have not gotten there yet. Julie. lgoehl@dstream.net


Lee R's April 3 reply to Jan R's April 3, 2001 - Dear Jan, How about typing up a notice and asking the doctors and hospitals in your area to post it. If your local paper has a "Community Bulletin Board" they may put your particulars in for free. You deserve a lot of credit. Jan, there are a lot of folks out there who need the help. Even supermarkets where I live have boards for ads. I live in New Jersey. Are we close? Bestest, Lee. LeeJRoush@msn.com


Cristina's April 3 reply to Judith's April 3, 2001 - Hi, I've had that same feeling in my arms when my blood pressure was too low. It always happened when they tried to get my Coreg up past 18.75mg. Have you been checking your blood pressure? Does it come with lightheadedness? I agree with Jon: find a good CHF specialist. rjlisa@bellatlantic.net


Jon's April 3 reply to Julie's April 3, 2001 - Hi Julie, Playing the hand you are dealt is done in many ways. You sound to me like you are having a perfectly normal reaction to the pronouncement of a serious, chronic illness. Usually that feels like a sentence of doom, gloom and death to us at first, especially since many doctors have the bedside manner of a monkey having a seizure when it comes to giving the diagnosis. They just don't know how to phrase it to cushion the shock and they do not provide the follow-up explanations that would make it clear we still have a life ahead of us that has meaning. Figuring this out on our own stretches out the period of shock and adjustment.
     Selfish? Who isn't - even at the best of times? <g> I'd say right now you should watch out more for being too hard on yourself than for imagined character flaws! Remember that your life really has changed and changed a lot so it is proper for you to have new concerns and fears that influence your behavior and thinking. You have to make a lot of life style changes and get used to a lot of new things - physically, mentally and emotionally. If you didn't show any reaction to that, you wouldn't be normal!
     Having CHF and a lot of stress as a result does not reduce your value as Julie. You are at least as valuable now as you were before. Learning to cope with CHF may increase - not decrease - your value as a person, a friend, a family member, etc,... That doesn't mean it will be easy and it doesn't mean you won't snap a few heads in the process when people bug you or when you get really stressed about making the adjustments. That's cool. Don't be too hard on yourself and feel free to vent here anytime. Jon.


Thelma's April 4 reply to Judith's April 3, 2001 - Dear Judith, Does that ever sound familiar?! I would be shopping and a sudden wave of extreme exhaustion would come over me that would cause me to stop cold in my tracks. It is the infamous Hit The Wall that all of us CHFers feel from time to time. Also, these meds can cause dizziness. Gradually as I stabilized on my meds these events were fewer and far between. However, I'm now attempting to titrate up on Coreg - currently at 18.75mg BID - and I've had a few of these episodes recur.
     Another symptom that is happening is I ache all over my body. My cardiologist says the achiness is not related to Coreg and is not sure what it means but I know others have mentioned it on this board. Why these cardiologists (mine is a CHF specialist) can't give us some answers is beyond me. Thank goodness for this board where people understand, Thelma. cullingt@qwest.net
 
Jon's note: Cholesterol lowering meds can cause severe muscle aches


Vicki, April 4, 2001 - Hi, I'm 47and was diagnosed with cardiomyopathy in Febraury. It's been a difficult adjustment since it came as such a shock to me. I discovered this site and it has been a constant source of good info and encouragement. The Lord walking with me every day and folks like you willing to share your experiences are a blessing.
     I am on 12.5mg Coreg a day and 5mg Prinivil a day. The doctor wasn't able to increase my Coreg any higher because my blood pressure would, in his opinion, fall too low. I am hoping and praying that it will still have the desired effect.
     I am concerned because even though my blood pressure is really low, my heart rate is high. Upon waking in the morning, it runs anywhere from 90 - 105. Should I be concerned? My doctor has not addressed this and it seems to me that if the purpose of my medication is to reduce the workload on my heart, then having such a high heart rate is counterproductive, even though my blood pressure is low. Am I over-analyzing and trying to take over my cardiologist's job or should I voice my concerns to him? My EF is 40%, my left ventricle is enlarged, and I have moderately severe mitral regurgitation. Thank you for any input and God bless you all, Vicki. Snevetsii@aol.com


Donna Z's April 4 reply to Jan R's April 3, 2001 - Hi Jan, I just started a support group for people with CHF. I have a wonderful regular cardiologist and one day while in his office I said people like us needed a support group, but never having done something like this I had no idea how to get started. He looked into it for me, talked with his partners in the practice and they gave me their building to use for my meetings, then he contacted SmithKline and they agreed to fund my group. Then we had to work on speakers for this group. My idea was to educate people and teach them how to live a good quality life with CHF - this is not a pity party. For this I needed speakers who where experts in areas of CHF. Some speakers we must pay for while some will speak for free.
     Then we had flyers printed up and sent out, then we advertised once again. This is where funding comes in - having refreshments and sending out announcements saying when the next meeting will be and who will be the guest speaker. Also, we created a database for our mailing list. I work very closely with my CHF specialist and her staff and I am soooo thankful for all the support I get from both doctors and their staff. It's a lot more work than it appears but if you think you would like to do it, go for it. I just wanted to tell you how to get a start.
     We hold are meetings every 3 months and I have a nurse practitioner and my cardiologist present, as well as the drug reps from SmithKline and some nurses from the hospital. I will say I have met some lovely people who are more than willing to help but the majority of work is done by myself and the nurse practitioner from my doctor's office really does a lot of the work too. We have meetings as to who will be the next speaker and what topics we still need to cover and how to contact these speakers. I hope this is helpful to you. Good luck, Donna Zak. dzak@worldnet.att.net


Jon's April 4 reply to Donna Z's April 4, 2001 - Hi Donna, Can you give some specifics? Maybe it would help others with this idea. Also, this would be a great topic for a simple web site - how to start and operate a local CHF support group!

  1. Where did you send the flyers once printed?
  2. What type advertising brought you the best response?
  3. Do you get a special mailing rate from the Post Office?
  4. Is there an online address where someone could go to talk to a SmithKline rep about funding?
  5. Did you have to start an official non-profit organization so the grants and funding could be written off taxes by the sponsors?
  6. If so, what steps are required to form a not-for-profit organization?
  7. Have you had CHF doctors give demonstration "exams" so patients know what CHF dox should be doing at office visits?
  8. Do you have any "closed" meetings without healthcare personnel so patients can talk freely about doctors?
  9. Etc, etc,etc,....

Thanks, Jon.


Ginger's April 4 reply to Julie's April 3, 2001 - Hi Julie, Your reactions to being told you have this sound perfectly normal to me. After a little while I got mad though - mad at the whole world and determined to prove them all wrong, with "all" meaning the doctors, of course. I know this sounds placating but with time you will feel not quite like you do. We learn to live with and deal with it. If ya ever need to talk, you can e-mail me or anyone else here, I am sure. :-) It does get easier. Hang in there. Stay well y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Tony's April 4 reply to Lee R's April 3, 2001 - Hi Lee, When my Lanoxin was reduced, my heart rhythm problems became worse and I suffered additional fatigue and weakness. These problems were alleviated when my Lanoxin dose was increased back to my normal dose of 0.25mg. I sometimes take increased Lanoxin on those days that my heart rhythm and symptoms become worse, and it really helps me. Since seasonal changes and other factors seem to affect and change my heart rhythm, blood pressure, and CHF problems, my medicine regimen occasionally requires adjustment. t0nyt@yahoo.com


Jon's April 4 reply to Lee R's April 3, 2001 - Hi Lee, I went off digoxin over a year ago due to side effects. I have been more tired ever since and have never reached the plateau I was on when taking it. So it goes. Jon.


Mike Joye's April 4 reply to Julie's April 3, 2001 - Hi Julie, I was also a total wreck when they told me I had dilated cardiomyopathy and would be on medicines for the rest of my life. My regular physician and cardiologist were an inspiration to me. They both talked to me and told me that new medicines and procedures were coming every day to help us. They told me I probably had an 85% chance of living 10 years if I stayed stable and a 75% chance of living 15 years if I stayed stable. This came after crying and praying and crying some more.
     I was a healthy 52 year old man with a lovely wife and 2 wonderful children. Well, I am still stable and every now and then I get a little down and out. Today was one of those days, but when I read the site I realized I couldn't stay down for long because so many others are in the same situation I am. I believe I will live a long life and see my kids get out of college and see my grandbabies. I believe that more and more medicines and procedures will come up. If you ever feel down, just remember that Jon has come a long way from an EF of 13% and he is still with us. I have had mine for 2 years and I am going to prove the doctors wrong.
     Thanks for visiting this site because each time we hear of someone having this problem it brings back the times we felt like there was no hope. Just remember to have a great outlook and it will get even better. God bless you and we will keep you in our prayers. Hang in there. joye13@gateway.net


Jan S, April 4, 2001 - Hi all, I have a question. I ran into a counselor this afternoon that led a heart support group I attended early on in my diagnosis. During our conversation, after I told him I had been on Zoloft about a year, he said he recently read online an article about antidepressents and heart disease. He though it was on Medscape. He said the study had shown that the drug not only helped the depression but also the heart in general. Does anyone know anything about this study? I'd be interested in seeing the text and what medicines were cited. Thanks, Jan. geschuppja@aol.com


William B's April 4 reply to Jon's April 3, 2001 - Hi Jon, I like it when a site opens a link in another window. That way you do not lose your place and can actual then cross-reference files and data a lot better. You can also cut and paste a lot easier, and you can also not have to remember where you were; the last (usually) window is your start point.
     I started Coreg today. My doc finally did a little research and I started out on the 3.15mg dosage twice a day. The doc at least took the question I had asked about Coreg last time and was actually a little more knowledgeable about it. I think I am about to get him to loosen up a little bit and to realize that it is my body and I have to pay the price for negative reaction. We parted with a good laugh. I think he is human after all.
     I took my notebook with questions I had written since my last visit and got all of them answered. I also finally wrote down the terms that applied to my condition. It seems that both sides are damaged. William B. willdet@juno.com


Brandy L, April 5, 2001 - Hi, Well, I started Coreg Monday. I am not sure why. I have PPCM and was on metoprolol for a year and it improved my EF from 30 to 45% in 6 months. Anyway, they decided to switch me so here I am. On Wednesday, every time I stood up my BP went to 77 over 54 and my pulse was 111. My typical numbers are 96 over 64 with a pulse of 70 standing and 51 sitting. I also swelled for the first time in a very long time, but am not allowed a diuretic because it will drop my BP even lower. Has anyone had this happen before? Brandy. brandylee1114@aol.com


Sylvia E's April 5 reply to William B's April 4, 2001 - Hi William, The best thing I ever did was print out the info on Coreg I found on this page and gave it to my doctor. He then wanted the site address and I know that he regularly reads and pays attention to the posts. I am now on 25mg BID and am tolerating it very well. The fatigue has finally left me and I feel as though I have a new lease on life. One needs an open-minded doctor to deal with this insidious disease. Good luck to you all, Sylvia. syledmonds@aol.com


Donna Z's April 5 reply to Jon's April 4, 2001 - Hi Jon, I'll try to answer your questions about my support group the best I can.

  1. I use a patient file from my doctor's office and through my CHF specialist's word of mouth to her patients, plus my regular cardiologist and the local hospital are sending flyers to all patients who have been diagnosed with CHF. One problem I have found is that we call my group Congestive Heart Failure Support Group and then we have my doctor's logo on the flyers, which is fine for us but I cannot use them at other doctors' offices because they feel it's advertising for my cardiologist. I'll have to change this
  2. We have not done much advertising but hopefully we will get advertising from the Philadelphia Inquirer and the local papers
  3. I take the envelopes back to my doctors office and they mail them for me
  4. My doctor did all the work in talking to SmithKline so how it was done and who he talked to, I couldn't tell you
  5. If we are a tax exempt organization, then it's done through my doctor's office. Basically they set everything up for me and gave me the ball to run with. Anything I want to do is okay with them; this is "my baby"
  6. We had our first meeting in January of this year, which was a get-to-know-us meeting, just talking about what we hope to accomplish over time and what topics we will be discussing
  7. We hold meetings every 3 months. There is a lot of work that goes into this and the nurse practitioner who helps me has 2 small children and works full time, so this schedule works for both of us
  8. I will be having my CHF specialist speaking to my group somewhere down the road but I do not try and get people to switch doctors if they are happy with theirs. I just want to inform people about what is out there. I have to remember not all people get referred to CHF specialists for one reason or another but having a good cardiologist who at least has been trained in CHF is important. Just ask Walter K. who is in my support group
  9. I have not had a closed meeting only because I think it might be illegal to have that kind of meeting without a doctor present, plus I would not want to give out any information that could be wrong. I say what's on my mind and my doctor knows that

There is a lot of work that has gone into this and if it wasn't for my doc and his nurse practitioner I would not be doing this. He really believes in me, and my CHF doctor and her staff have been wonderful. It is very hard to find good qualified people who will come and speak to a group, and this is where my CHF doc's office and staff have been more than helpful in getting me in touch with people. For our next meeting we are having a nutritionist who worked with my CHF specialist at Hahemann University. I cannot tell you how hard it is to find someone who really knows low sodium diets and all the other stuff that goes on with people who have CHF. Our topic this time will be "Dining Out" since a lot of people have questions about eating out while on vacation. I hope this has been somewhat helpful but I have to say most of this has been done through my doctor's office. God bless him. Donna. dzak@worldnet.att.net


Jon's April 5 reply to Donna Z's April 5, 2001 - Hi Donna, I think all info on the subject helps anyone desiring to start a local support group. It's unknown territory for most people, so any real-life experience helps. I turned down an offer lately partly because I would have had to form a non-profit organization to get grants so I was just curious.
     I would not advise anyone to persuade a patient to switch to any specific doctor, regardless of their situation. However, like you say, getting a CHF specialist is a good idea to receive the "best" care possible for heart failure.
     The only hang-up I can think of for hosting a meeting now and then for patients only would be insurance company regulations for the building involved. I asked about that because I know a lot of people who don't have the type of personality required to ask their doctor a question about some things even in the privacy of an exam room. Such people would never have the gumption to stand up and discuss it in front of any doctor, especially one not their own. They might speak up, however, in the presence of patients only, whom they believed to be sympathetic. The American doctor-patient relationship is a tricky one and not everyone is willing to discuss what's really on their mind with a doctor present. That's why I wondered.
     I doubt that any 2 support groups are ever run the same way but I think you gave some solid info on one possible way to get the ball rolling and I hope others can do likewise. :-) Jon.


Joe S, April 5, 2001 - Hi, My blood pressure has been rising up and up. Yesterday it was 200 over 110. The only thing I can think of that I'm doing different is using sweet-n-low instead of sugar. I am on 40mg of Prinivil now. Any sugestions? Joe S. jes@pronet.net
 
Jon's note: I'd see a doctor pronto for this


Stephanie's April 5 reply to Vicki's April 4, 2001 - Hi Vicki, Your story sounds a little like mine. I am 44 years old and was diagnosed with idiopathic cardiomyopathy in November of 2000. My EF was 15%. They don't know what caused my cardiomyopathy but they thought that it might have to do with my heart beating too fast, therefore the muscle became weak. They said my heart was just tired from trying to keep up. My pulse was always around 100, even at rest.
     They put me on medication to slow my heart and make it beat more efficiently. I take 25mg of Coreg. I started at 3.25mg and have worked up. My blood pressure would bottom out and I would just stay at that dose a little longer. I was at 18.75mg about 2½ months. My BP was low but my doctor decided to try the 25mg anyway and I am doing much better. My resting pulse is now around 72. You are in my prayers. We're gonna make it through this. Thanks, Jon! Stephanie. moodystephanie@hotmail.com


Jon, April 5, 2001 - Hi everyone, The following pages on my site have been updated:

  1. New CHF Meds
  2. Medspeak
  3. Heartbytes
  4. Coreg and Beta-blockers

Jon.


Charles K, April 6, 2001 - Hi, I think this may have been covered or commented on before but with the fuzzy brain it's getting harder to keep things straight. Since I was first diagnossed with CHF I have had vague chest pains that I describe as deep, sometimes sharp, sometimes not. They last from a few minutes to a half hour or so and are more uncomfortable than painful. My doctor said this is common and not to worry. My EKGs are good and I have clean veins.
     For the last few days these pains have gotten longer and sharper. They have migrated to my neck and upper shoulder. I know what this sounds like but I'm real tired of going to the doctor and him telling me not to worry. He's been good about it. I feel like I'm wasting his and my time. So I thought I would pick your minds and experiences first. Is this new pain a CHF thing too? Thanks in advance. the_bohemian@hotmail.com


Ben, April 6, 2001 - Hi all, It's been close to a year since the last time I posted to this site. I don't have any recent qualitative numbers regarding my EF other cardio statistics, however over the course of a year my dental hygenist has commented twice now on the improvement in my oral hygeine. Since nothing has changed except the addition of CoQ10 to my regimen, the conclusion is obvious. Whether or not the CoQ10 is effective for my heart, I'm pleasantly surprised to have better gums! The possible correlation between certain heart disease and peridontal disease is commented on at www.bracesinfo.com/cardiovascular.htm
     One thing I am curious about. In the 5 years of my diagnosed history of heart disease, my 0.25mg per day dose of Lanoxin has never required adjustment, despite fairly frequent adjustments to my Coumadin dosage. Is that common? What kinds of questions or tests should be administered to establish if my dosage should be changed?
     In closing, I offer the reminder to all fellow travelers that, "Every day above ground is a good day." Ben. onmain@hotmail.com


Donna Z's April 6 reply to Jon's April 5, 2001 - Hi Jon, The doctors gave me their "Wellness Center," which is attatched to their offices so insurance is not a problem. If the group should get too big, the hospital will give me one of their rooms but as I said, a lot of this has been done through my regular cardiologist and his partners. All my expenses are paid for by Smith Kline.
     I feel I have a exceptional cardiologist who really took a lot of time to help me do this. He keeps telling me I'm good for business, so he can't have anything happen to me. As I said, I also have a very good relationship with my CHF specialist and her nursing staff who has been very helpful in getting me in touch with quality speakers. I don't want speakers who aren't going to give useful information as people won't want to come back if they aren't getting anything out of it.
     If someone wants to try this, I say go for it. Hopefully now they have a better understanding of how my group works. If another lives in the Philadelphia area and would like to attend the next meeting, here is the date, place, and time.

The Congestive Heart Failure Support Group Of Chester County
915 Old Fern Hill Road
West Chester, Pa 19380
Time: 5:30-6:30 PM
Speaker: Nutritionist Nancy Hartman
Subject: Dining Out
Date: April 23,2001
Place: The Wellness Center

Donna. dzak@worldnet.att.net


Jon's April 6 reply to Donna Z's April 6, 2001 - Hi Donna, I must have missed something entirely because the thread eludes me. What do you mean about non-quality speakers? I don't understand.
     I only mentioned the insurance company for the building because I was a bit stunned when you said it might be "illegal" to have a meeting without a doctor present. The phrase just sort of leaped out at me. <lol> I wouldn't call a group of patients getting together a "closed" meeting myself, since the group is for patients, after all. ;-) Jon.


Ginger's April 6 reply to Joe S' April 5, 2001 - Hi Joe, I use Sweet-n-Low all the time. I see no reason it would raise blood pressure. You need to call your doc ASAP because that BP is way too high.
     Support groups are great. The only one in Miami that I found was a national one. I can't think of the name of it but the youngest person there was 65 and no one had cardiomyopathy. They all had CAD and had gone through open-heart surgery. So I passed on it and use this place for a support group. You would think in a big place like Miami you would have more then just that one such group but if there is, no one seems to know about it. I even get funny looks at my cardiologist's office since I am the youngest patiant he has. Anyhow Joe, I would call the doc right away. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jan R's April 6 reply to Donna Z's April 5, 2001 - Wow! What a great lot of info to digest! I am familiar with the whole non-profit process from my work with AIDS patients in another lifetime - it seems. I wasn't actually looking to get quite that formal and organized about it but I hope lots of others do. I hope to have the type of group that's just folks and their families getting together at one another's houses for barbecue, venting, and great info sessions; So spouses can compare notes or just make friends, and so kids can have someone their age who has a tired mommy or daddy just like they do. I guess there are all sorts of support groups. I have infinite pride and respect in you for going all the way to help others! I have taken everyone's advice in with a grain of sodium free seasoning <g> and decided to ask at my doc's office if I can just put a little note on the bulletin board, as well as at more local hospitals. Please keep us updated on how your group is doing! I am still looking for locals - I'm in southern New Hampshire but anywhere in "upper New England" is pretty close. In the words of a fave rock group of the 70s and 80, "Is anybody out there?" Jan. therowlands@att.net


Ann C, April 6, 2001 - Dear List, This is just an update letting everyone know that almost all the i's have been dotted and the t's have been crossed for me to be put on "The List." All my tests came back negative for antigens, which is good news that a donor heart will not have to be very specifically matched. I am excited and scared at the same time. Life has been so different since I have taken a turn for the worse. I cannot drive, I cannot do anything by myself, including bathing. I cannot cook meals, and Meals On Wheels comes to my home to feed me. It has been horrible. I hope that relief is in sight soon. I have been very patient. Please send prayers in my direction to guide my family and me on a peaceful path, which ever way this journey leads us. Thank you in advance, Ann Chambers, praying and waiting. Shomeekatz@aol.com


William B, April 6, 2001 - Hi, You guys need to try splenda for your sugar replacement. We have been using it about 2 years and my wife, who has been diabetic for nearly 30 years, has been able to satisfy her sweet tooth, keep her sugar under control, and splenda can be used to cook with and it does not turn bitter. We had a friend in Canada who sent it to us. Now it is imported in the USA. Look on the label and see if they are using sugar alcohol, which is higher in carbs than regular sugar. Be sure to check your total carbs if you need to control your blood sugar. William B. willdet@juno.com


Bill D's April 6 reply to Charles K's April 6, 2001 - Hi Charles, A pain in your neck and shoulder could be a warning of a heart attack. Does it feel like pressure? Do you have nitro pills? If you take one or two and the pain disapears, that's a sign that you were about to have a heart attack. Bill D. billdog11@earthlink.net


Bill D's April 6 reply to Donna Z's April 5, 2001 - Hi Donna, We used to live in Westchester too. On the Old Rt. 202 in a place that was called Merriweather Farms. Don't ever assume your doctors set you up as a tax free organization where your donors could write off their donations. I did it once and it was a hassle. First, you apply to your State. In addition to all the papers you have to file with notary seals, you have to write up a Mission Statement. You have to educate the un-educatable, feed the hungry or do something the State likes. You'll have to file taxes every year just because you earned a few pennies in you checking acount. If the State likes it, and most times they won't, you'll have to cart it down to your local IRS office. Don't send it! They will lose it. Make your worst enemies the officers. Unlike you, your organization won't die with you. It'll live forever. Ten years later the IRS is bugging me to file taxes just because they made me a VP for my efforts! Bill D. billdog11@earthlink.net
 
Jon's note: Absolutely great description! <lol>


Vee, April 6, 2001 - Hi, I'm just throwing in my 2 cents worth about support groups. I also think it's good to have time without doctors and health care professionals present, preferably at every meeting. Otherwise it becomes more like a class than a support group. What's great about a support group is that people can vent, learn from each other, and come away feeling validated and more able to cope, or even become advocates and facilitators themselves. It's the whole group process thing. That might be difficult to do with doctors present since they do tend to dominate, even if it's only in people's perceptions. People often defer to them, especially ill and vulnerable patients. Even if the group meets mainly for a presentation by an expert, I think the expertise of the participants needs to be continually acknowledged, supported, and drawn on, especially when it comes to hands-on experience like coping with the treatment regimen,or with pain, fatigue or loss. Unless they have CHF themselves, docs just don't have the experience-based knowledge that we all have. I'd prefer the professionals to be a resource for group meetings, not its core. That idea of barbecue and venting sounds good too! maize2001@hotmail.com


Jon's April 6 reply to Vee's April 6, 2001 - Hi, I know what you mean Vee, and I'm not really responding to your post but this seemed a good place to bring this up. I just want to make sure that everyone understands that Donna knows what she is doing and I am sure her group has more than the required level of patient-to-patient interaction that makes it "click." I am also sure people there are encouraged to vent and be honest at all times. No one who is insincere starts a support group - it ain't glorious, it's just hard work! Donna, I did not mean to imply otherwise at any time! I was just mentioning a point of view I thought might benefit anyone starting a new local support group: that a lot of people aren't "able" to talk about some things with a doctor present and we who are very much able to do so sometimes forget that, that's all.
     I guess no one is bothered by the links opening in a new browser window, since I only got one reply and it was positive. <g> I'll leave them this way.
     I do have a set of new pages well underway but it may take me awhile to get them polished off and put up. In the meantime I want to say thanks to all of you. The old web site keeps chugging along, thanks to my readers, not me. I never know whether to mention how busy the site is or not. If anyone is interested let me know and I'll post monthly numbers in a general sort of way. Jon.


Randy B's April 6 reply to Ann C's April 6, 2001 - Hi Ann, You will do great and will feel so much better after you have a new, working heart inside your chest. I will be praying for you and I will talk to my transplant support group here in Sacramento, California and have everyone do the same. You will be back to normal speed in just a couple of months after surgery, depending on how ill you get waiting for the donor heart. I'm so happy for you and you decision to be put on the UNOS list. I had doubts but that all changed as I went through the heart transplant experience. Good luck and prayers from me and my friends! Randy B. BStriperslayer@aol.com


Jon, April 7, 2001 - Hi, For those who wondered just what a CHF doctor is supposed to do during a proper exam after my post mentioned it the other day, try this Url for more info - it is part of the links zip file you can download on this site: www.aafp.org/afp/20000301/1319.html. Jon.


Leland Y, April 7, 2001 - Hi everyone, This is a real interesting site for those of you who are interested in the latest for testing for CHF. It is www.biosite.com. Here you will find an article called "B-type Natriuretic Peptide in the Rapid Assessment of the Heart Failure Patient" and it gives the complete heart failure pathophysiology. It's rather comprehensive, with lots of charts and is great for those of you who are into the technical end.
     I also found that www.westglen.com is a fairly nice medical site for info other than CHF, such as glaucoma, diabetes, etc,..., and other diseases associated sometimes with CHF. Luv+salutations, Leland. LLYEE@surfside.net


Sharon P, April 7, 2001 - Hi, I'm really blessed the hospital in my area has a Chaplain dedicated to running 8 different support groups for cardiac issues. Two of the groups are specifically for younger women. In addition to Chaplain Barbara, there is an ICU nurse, a CHF nurse practitioner, a cardiac nurse or the cardiac rehab nurse, who also attend each meeting. Surprisingly, the nurses encourage us to speak frankly about our doctors and suggest we change physicians if we're unhappy. Because of the benefits of this site and all of you, and the support groups I attend, I felt called to give back to others in some way so I now volunteer for the Chaplain at the hospital one day a week. What I find interesting is that some of the mailing lists contain over 300 names and yet we have an average attendance of only about 10 to 25 people. It makes me sad to think of what they are missing. Thanks to each of you for your support and prayers. I know it helps us live a better life, Sharon P. sparker103@home.com


Jon, April 7, 2001 - Hi everyone, Since this thread popped up, I have been amazed at how many readers contribute directly to patient education and support through some type local support group. I think this is great! My hat is off to each and every one of you. The more groups there are of all types and styles, the better, I say. :-) Jon.


Donna Z, April 7, 2001 - Hi Jon and everybody, I was told by a friend who was in a leukemia support group that if you are giving out medical information to people you must have a professional present. The doctor is also there to answer questions with knowledge I don't have.
     Anyone in our group can and does say anything they please, including myself complaining about my PCP and how he misdiagnosed me. My doctor knows I don't hold back. I do have to say a wife of one of the patients did ask me if we could have a caregivers-only meeting so she could vent without her husband being there and at some point we will do that. We had one man complain about his cardiologist because he almost killed him by giving him too much Coreg too fast (that cardiologist was from my doctor's group) so I don't want people to hold back. As far as I'm concerned they can say anything they want. The other thing I did was pass out cards and ask people to write down what they would like to get out of this group and what topics they would like to have discussed.
     Hey Bill D, I don't pay for anything. SmithKline pays for everything and they take care of advertising brochures and flyers so no money ever changes hands. If I want something, I tell them what I want and they take care of it, including refreshments. Everything is ordered through their drug rep and paid for by her. The building belongs to my doctor's group and they take care of everything else.
     This group was created to educate people and hopefully give them a good quality of life. I was amazed at my first meeting how many people didn't know to stay away from lunch meat and canned soups. This is also a new group and we are only having our second meeting so we are still learning how to do things but we have had help from other support groups at the hospital and with the American Heart Association.
     By quality speakers I mean people who have dealt with people who have CHF on a daily basis. I had an experience a few months ago while going to a dietitian about my blood sugars. She could tell me how to manage that but she could not put both together. I had to tell her what I could eat CHF-wise and I came out of there saying if this is the kind of speaker I get for my group they really won't learn anything and then they won't want to come back. I also was amazed when I said it was okay to be tired and take a nap if and when you needed it, at how many people - as in spouses - thought their husband or wife was just being lazy when they did so. So I am learning as I go along and I'm sure things might change as time goes on because this is a learning experience for me as well. No one can help a CHF patient more than another CHF patient support-wise. All the doctors in the world can give you medicine but no one knows what it's really like for us until you have walked in our shoes and know exactly what it feels like to have CHF, and live with it on a daily basis. Donna. dzak@worldnet.att.net


Donna Z, April 7, 2001 - Hi, I have been thinking about doctors being present at support group meetings, and although some people won't open up I will look at this from a different aspect. Maybe some doctors should attend some of these meetings as a learning experience for themselves, and hopefully from this will learn how to be more in tune with their patients. It might not be a bad thing for doctors to learn from their patients, especially exactly how people deal with living day to day with this so they might become better doctors. Donna. dzak@worldnet.att.net


Vicki's April 7 reply to Stephanie's April 5, 2001 - Hi Stephanie, Thank you for responding to my question. I won't feel so stupid asking my cardiologist about this. I must admit though, that I'm disappointed he did not address this with me himself without my having to bring it up. Your case sounds very much like mine. My cardiomyopathy is idiopathic as well. They said it was probably caused by a virus. My primary symptom was shortness of breath. My internist diagnosed the problem after I had a chest x-ray during a bout of "bronchitis" during the fall that I never could shake. He then ordered an echocardiogram which confirmed the enlarged ventricle, etc,... I then was referred to my cardiologist and he ordered a nuclear stress test to rule out a blockage. That test showed a possible blockage so he then did a catherization.
     The cath confirmed everything the echo had shown: EF 40% and no blockage. He explained that my heart muscle was weak and just not pumping as it should be. Needless to say, I was in a state of denial over the course of the few weeks all of the tests were done. I kept thinking it was just a dream and I would soon wake up and find out it was a mistake. Then I went through a period of a few weeks that I was utterly scared to death. I couldn't understand how such a thing could happen to me and pictured myself dying too early to see my grandchildren and all that kind of stuff.
     Finally, I got up off my rear and started walking 4 days a week and came to the realization that the Lord was going to take care of me. He allowed me to be diagnosed under such a quirky set of circustances. I just have to believe that He is in this and He is in control. Walking seems to have brought down my heart rate some. I hate to admit that because I hate to exercise but it does seem to be having an impact. It is a comfort to hear from someone going through the same ordeal. It has been harder dealing with the emotional side than the physical symptoms. Keep in touch, please. Vicki. Snevetsii@aol.com


Tom W's April 7 reply to Ginger's April 6, 2001 - Hi Ginger, By now haven't you realized that you are the youngest person in Miami? <g> Tom W. tew4515@yahoo.com


Gino's April 7 reply to Vicki's April 4, 2001 - Hi Vicki, With an enlarged heart and moderate to severe mitral regurgitation, an EF measurment (40%) is not a very reliable measure of the actual degree of heart function impairment. It is possible that your heart is more damaged than that EF reading suggests.
     What is important about heart rate in CHFers is how long a period of time the heart rate stays high. If it is only high during exercise, the heart is rising to meet higher demand by the body. If it is high all the time, that's another case, and you need to talk with your doctor about it. Improvements brought about by use of ACE inhibitors and beta-blockers can take as much as a full year to show up.
     How low is your BP? Sometimes low BP is the result of all those heart drugs reaching peak effect at once. If that's the case, it can help to stagger the taking of your meds by an hour between each, or something similar.
     The most important thing is to talk with your doctor! Silence is not golden in this case! Gino.
 
Jon's note: Gino is Italian so I paraphrased his post. All mistakes are mine.


William B, April 7, 2001 - Hi, I have not been able to find a study where Coumadian and aspirin have been taken together. One doctor believes that baby aspirin (81mg) and Coumadin taken together max the benefit, while my other doctor says he would like to see the study on this combination. I have been unable to find a study on this combination although single studies are all over. Is any one else taking these together? Thanks, William B. willdet@juno.com
 
Jon's note: It is considered a very bad idea to take aspirin (any dose) with Coumadin. Such a study would possibly endanger the participants, so it would not be done.


Dana J, April 9, 2001 - Hi everyone, I just wanted to post an update on what has been going on with me. I now have my second opinion and it's agreed that on top of the CHF, I have arthritis and fibromyalgia. This explains the hair loss, muscle cramps, joint pain and worsening fatigue. Even though I'm unhappy about the diagnosis, I'm glad I'm not crazy! I've been treated like a hypochondriac for so long now that I was starting to think it was true. My husband is taking me out of town to a rheumatologist next week to see about treatment.
     Please add my mom to your prayers. She desperately needs them. Her name is Nancy and she has fibromyalgia, Lupus, rheumatoid arthritis and osteoarthritis. She has been in a lot of pain lately and has been very depressed. She just switched to a new doctor last week and I think he will take better care of her than her last doc. I hope she will see some improvement soon. In case I don't post again this week, I want to wish everyone a wonderful Easter! Dana. danajj2@aol.com


Ginger's April 9 reply to Tom W's April 7, 2001 - Hi Tom, You are so right. <lol> But ya know what? On bad days I move as slowly as they do, so who notices?! ;-) On a more serious note, I think it is great, like Jon says, that so many of you have started support groups. I wish someone would start one here. I am too tired to even think about it and wouldn't know where to begin anyhow to find people my age to join one. <g> So I will just keep this place for mine.
     Gino, I did not forget about you - I just lost your ICQ number. If you want to resend it to me, mine is 8868822. Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Julie's April 9 reply to Vicki's April 7, 2001 - Hi Vicki, I was misdiagnosed as having a bronchial infection too. Where I live, we have a walk-in clinic and I went there twice. Believing that doctors know more than I do, I did everthing they told me and took all the meds as prescribed. The last time I went there they gave me a steroid shot - a bad thing for a CHFer - which sent me into a full blown heart attack. I asked my husband to get me in to see my doctor and 2 days later, while in her office, I had my second heart attack. It seems I had the firrst one before I went to the walk-in clinic. If they had done an EKG they would have discovered that, but they didn't.
     My doctor's office is right across the street from our only hospital. Had my husband not been with me I would have gone by ambulance. God was with me then, as He is now. While in the hospital I had echocardiogram, a catheterization and had a pacemaker put in not once, but twice. My cardiomyopathy was caused by a virus and I have an EF of 20%, with only minimal blockage of one artery.
     I am supposed to be in a cardiac rehab program but that is another story. I am 53 years old, have raised 6 children and have 15 grandchildren. I had just gone to work 9 months before this happened because sending children through college is expensive and our savings were pretty well depleted. I can no longer work at all and our insurance only pays 15-25% on meds. I have filed for Social Security Disability I didn't mean to go ranting like this; I just wanted Vicki to know she is very much not alone. Julie. lgoehl@dstream.net


Julie's April 9 reply to William B's April 7, 2001 - Hi William, I also take aspirin with my Coumadin. I take 7mg Coumadin and 325mg enteric aspirin. My cardiologist says its because I only have one artery with any blockage and it is jagged, and that the aspirin will help smooth it out, keeping any plaque from breaking off so I have to take aspirin for 3 months. Julie. lgoehl@dstream.net


Christy P's April 9 reply to William B's April 7, 2001 - Hiya William B, Jon, and everyone else, At the time I was diagnosed with CHF I had also endured a series of TIAs. The neurologist initiated aspirin treatment, and the cardiologists started heparin treatment, which was later replaced by Coumadin. I continued taking both aspirin and coumadin for about 2 months, and after a followup MRI they concluded that it was best to take me off the aspirin - they seemed very relieved. Three months later I was taken off Coumadin and put on an aspirin a day therapy. I then had another TIA so they took me off aspirin and restarted Coumadin. I was getting really confused but the doctor explained that both aspirin and Coumadin are anti-coagulants and they just target different factors in the blood for coagulation. My doc's concern with taking both was that it left fewer avenues for emergency clotting in the case of a "bleeding event," which isn't as rare as one would hope. I endured one of those shortly thereafter. Christy. breezip@hotmail.com


Karen K's April 9 reply to Ben's April 6, 2001 - Hi, I just had to respond to Ben's post regarding the condition of his gums and how he thought it was a result of taking CoQ10. Interestingly, I've had the same type reaction from my dentist. He basically has said, "I don't know what you're doing, but keep doing it." I can tell you for sure it isn't flossing since I've never been a faithful flosser.
     Another thing I'd like to share is that during my last blood work, when my cholesterol level was checked, it dropped from 215 to 195. I am attributing this to the fact that last August I started taking one gram of flaxseed oil in capsule form. My sister-in-law works part-time at a health food store and suggested it would be good to take it and I decided it couldn't hurt. She didn't recommed it specifically for cholesterol but it is one of the Omega-3 fatty acids. Last night I read in Prevention magazine where it is best to take flaxseed in the oil form as opposed to sprinkling flaxseed on food items. Something to ponder.
     My daughter had her second chemo session Friday. I would ask that you all remember Wendy and her family in your prayers. She has 2 more sessions of this chemo, then 4 sessions of another medication, followed by radiation therapy. She is managing to work along with all of this. Actually, I can see for her that work is beneficial. She is feisty and I think we can beat this but prayers certainly don't hurt. Karen. karenk@machlink.com


Tracey C, April 9, 2001 - Hi Everyone, I was wondering if we are able to eat sushi (without the dippings). I've searched the Internet for sodium content for sushi but haven't been very successful. Thanks! Tracey. nuttytandt@aol.com


Ernest D's April 9 reply to William B's April 7, 2001 - Hi, In reference to aspirin and Coumadin, I have been on both since 1996. My aspirin dose was 325mg until just recently, when it was reduced to 81mg. My CHF doctor said he would not discontinue the aspirin altogether because of the severe CAD which I also have in conjunction with everything else. I hope this info helps, Ernest D. bornos@worldnet.att.net


Mike W's April 9 reply to Jon's April 6, 2001 - Hi Jon, As a mostly retired Sysadmin/web master/coder-type person I would be interested in your site's stats, traffic, bandwith, visitors, demographics, etc,... Regards, Mike W. mikeyw@sohogurus.net


Marsha H, April 9, 2001 - Hi Jon, Since spring has sprung, my thoughts have turned again to MyoVive. Can you get information on a projected roll-out date for the new formula? I have been talking about it to my doc and to the folks in cardiac rehab, and they're all ready to hear more. Many thanks. hazelwood_w-m@juno.com
 
Jon's note: It should be making a first appearance in about 4-5 weeks - as far as I can tell. Specific info has been hard to come by


Bev T, April 9, 2001 - Hi everyone, I have asked my cardiologists - both local and the transplant team - about hearing my heart beat in my ears. Sometimes it is more prominent than others. It drives me crazy but neither doctor has an answer. Well, one suggested that I might see a neurologist! It's kind of a swooshing sound mostly in my right ear. Has anyone had the same experience?
     Oh and Jon, I thank you for all the links that you post. I am just amazed at the amount of research you do! Bless you all, Bev. Mtnmama008@aol.com


Jon, April 9, 2001 - Hi everyone, I got an update on Susie T from Janice today. As usual, Susie is very sick. I have to tell you, Susie has been so sick for so long that I am stunned at fortitude. Please include her in your prayers since she currently has an infection in her heart. You might remember her from my prayer list when I had working mailing lists. Jon.


Wendy B, April 9, 2001 - Hi everyone, I'm a new poster to this board. I was diagnosed with CHF a year ago at the age of 55. I got it from a lifetime of a very strict medical regime: 2 aspirin and a 6-pack of beer will cure anything. Is anyone else having trouble finding low sodium products? I don't keep credit cards so the web isn't really useful. I have been to every health food store in my neighborhood and so far I've found maybe 3 places that have a reasonable selection of low sodium products. Two of them are annoying to get to.
     This might not be surprising, except for the fact that I live in New York City, in Greenwich Village. I can find organic and low-fat every time I turn around, but almost no low sodium. If anyone else has had these problems, do you think we could start a letter writing campaign to some of the big chains? Frankly, for those of us who work full time, making one's own catsup and tomato sauce just isn't an option! boozw@hotmail.com


Doug B, April 9, 2001 - Hi, I have been sitting in the wings for the past 8 or 9 months enjoying the site and thought maybe I could get an answer to something that has been baffling me for some time. I was working in Saudi Arabia when my condition came to light in July of 2000 - cardiomyopathy with an EF of 10%. I returned to Canada (Ontario) in December of 2000 and the specialist here has confirmed that diagnosis.
     According to my understanding, with a 10% EF I should be almost immobile but in fact I feel pretty much normal now and have worked continuously since being released from the hospital (a 2-week stay), and I walk 2 to 3 miles every night at 4 mph. I take an ACE inhibitor and a beta-blocker as well as the usual fluid management and heart regulation meds. I had an echo last December and there was absolutely no improvement in my EF.
     Does anyone else have a low EF like this with little effect? Can anyone explain why I have not been very much affected to date? I worry that some day it will hit me all of a sudden. All the best. dsbergen@hotmail.com


Bill D's April 9 reply to Bev T's April 9, 2001 - Hi Bev, Most of us hear our hearts beating - either thumping sounds or swooshing sounds. It's louder when everything is quiet, like when you're going to sleep. After awhile you will forget about it. It's better to hear it because you know your heart's still beating! <g> Bill D. billdog11@earthlink.net


Jack, April 9, 2001 - Hi all, Tracey, the fish part of the sushi has little or no sodium because it is raw. The seaweed and rice are okay too however the ginger is loaded with salt and sugar. The horseradish has salt too but you probably can't eat enough of it to cause problems.
     Ben, They have proven that CoQ10 works wonders on your gums. They have even started putting it in toothpaste but don't buy it because there isn't enough in the tube to do any good even if you ate the whole tube. maddjak@hotmail.com


Elizabeth H, April 10, 2001 - Hi, I was diagnosed 6 months ago with CHF and type 2 diabetes. I experience tingling in my arms and legs. Have any of you experienced this? I have enjoyed reading all the questions and answers. Thanks so much! betty129@webtv.net


Fred D's April 10 reply to Bev T's April 9, 2001 - Hi Bev, I also hear my heart beat in my ear but only in my left ear. It can be quite disconcerting at times. I do not always have it and it can be of varying degrees of intensity. Sometimes I feel like people around me should be able to hear it. My doctor has no explanation but advises me to contact him if there are any abnormalities in the rhythm of the beats. I do have pauses but there seems to be little that can be done at this time because they happen only rarely. I hope this helps, by letting you know that there are others with this condition. deal@midusa.net


Joe S' April 10 reply to Bev T's April 9, 2001 - Hi Bev, I thought everyone heard their heart beat in their ears. Don't worry about it, it sure saves you from having to take your pulse. I use it to judge how I am feeling and yes, it does scare me at times. As my bio says, I have had a bad heart now for over 57 years and for years I thought everyone experienced these things. The weirdest thing that happens to me is when the back of my neck turns ice cold after a long walk on a hot day. However, if I can last 57 years with all of this so can anyone. Don't let it get to you and don't let the doctors get you on a downer. Joe S. jes@pronet.net


Ben B's April 10 reply to Doug B's April 9, 2001 - Hi, I will never understand this EF business and what it really means. In so many cases it seems virtually meaningless but I bet that almost everybody who posts here pays at least some attention to it. It is mentioned in a lot of posts as some sort of benchmark, all the while people are saying it doesn't mean very much. Many people even allow how they feel to be governed by this measurement. My personal opinion is that the problem doesn't lie in the insignificance of the ejection fraction parameter, but the difficulty in measuring it accurately. Yesterday I was at school and the elevator was broken. I went up to the sixth floor in the stairwell, passing students on the way who had to stop and rest. I'm not going to make a habit of this and I was out of breath when I got to the top, but I made it. The other students are mainly in their twenties and healthy, while I'm a 44 year old man with a messed-up heart and an EF of 25-30% on last measurement. Go figure. bdbrinkman@juno.com


Mike J, April 10, 2001 - Hi Jon, This is just for general information and may be of some help to others. Since my virus attack on my heart 2 years ago I seem to have remained stable but I have a few questions for you or anyone who would like to respond. When I first get up from sitting in a chair (I am a banker) and start walking around, I feel tired and somewhat winded but after a couple of minutes I don't have that sensation. I take 50mg Norvasc, 50mg Cozaar BID, and of course Lasix along with potassium. This is my meds regiment and I seem to have had this for quite some time. Of course my weight plays into some of it but I am curious about any others who might have this same thing happen to them.
     I work out 4 to 5 times a week and do 17 to 24 minutes on a cross-country walker. I work every day but sometimes when this happens it just scares me and I wonder if I am getting worse. Maybe I just need some pumping up. The other question is: What kind of blood tests should most of us get? I seem to only get blood work once a year. My cardiologist relies on my internist and he checks it once a year. I find it strange but sometimes I think I am doing okay so they don't worry too much about it.
     At my last visit with my cardiologist he told me to come back in 6 months for another echo and asked when my last blood work was done. I told him in September, although my internist wanted to re-check my cholesterol because it was 201. The recheck in March was 174 and my potassium was fine. What is your reaction?
     Just let me say again that anytime I feel bad I just read this site and God gives me a blessing and a good talking to about letting Him take care of everything. Thanks and God bless! joye13@gateway.net


Jon's April 10 reply to Mike J's April 10, 2001 - Hi Mike, See Jon's 3-20 reply to William B's 3-20, Jon's 3-22 reply to Marsha H's 3-22, and Jon's 3-23 reply to Ginger's 3-23.
     One possible reason for your initial lightheadedness upon arising, is that the meds slow down your heart and the hormonal systems that tell it how to react, so it does not adjust to a new activty level-increased blood flow requirement as quickly, especially on a calcium channel blocker, which is an unusual CHF med. Jon.


Heather K's April 10 reply to Ernest D's March 24, 2001 - Hi Ernest, I was wondering what you mean when you say you are a class 7 on the transplant list. My husband has been assessed for heart transplant and they say his Vo2max test results are still too good still. His EF is 12%. We live Canada so maybe they do things a little differently. I know he is heart function class 4. If you could let me know I would appreciate it very much Thank you, Heather. heatherk@cyberbeach.com


Mike J's April 10 reply to Jon's April 10, 2001 - Hi, Thanks for the info. I have often wondered about the calcium channel blocker but my cardiologist says it has a place in my condition. My internist also said it did some good. My cardiologist is not a CHF doctor but he is a great cardiologist whom I trust a lot. It does seem kind of odd though, about the Norvasc. I really expected to come off it but if it works I won't worry about it. I appreciate your info. Sometimes when I feel tired I think I am getting worse but then my wife reminds me that I am still doing anything I want and am working out as much as I do and she tells me to just hush. Thanks again and God bless you! joye13@gateway.net


Tracey C's April 10 reply to Jack's April 9, 2001 - Hi Jack, Thanks for the sushi info. Do you know approximately how much sodium the ginger has? I was away this weekend and had sushi without soy sauce but with a lot of ginger because I use it at home all the time. I thought it had zero. I also had a little wasabi, which is not too bad sodium-wise. Anyway, a few hours later I felt horrible, my heart pounded all night, my pulse was rapid, I was sweating, really I felt like I did prior to diagnosis. I couldn't figure it out. Maybe it was the ginger. Thanks for the heads up! Tracey. nuttytandt@aol.com


Yvette, April 10, 2001 - Hi, I have PPCM and a-fib. Lately I've been experiencing dizziness and lightheadedness to the point where I went to the emergency room because it scared me so much. The doctor in the ER gave me a prescription for an anti-dizzy medicine, which did not help. I saw my primary care physician 2 days later. He thought it might be my accupril so we reduced the dose by half. My blood pressure tends to be low (90 to 120 over 50 to 70). That did not help. Because I recently had tubes put in my ears in December, she thought they may be causing my symptoms. However, she stated if the ENT can't find anything that I contact my cardiologist. My dizziness is not caused by standing up too fast. It happens whether I'm standing or sitting or reclining. I've never fainted. Has anyone else experienced this? I'm getting worried. Sometimes I feel like it is all in my mind, until the next expisode. mommahouse@att.net


Lee R, April 10, 2001 - Hi Everyone, I saw an article on WebMD regarding heart attacks with no chest pain and thought it would be good to have all take a look at it. Symptoms can also be shortness of breath, palpitations, dizziness, nausea, and/or fainting. It said you are predisposed (to not having chest pain) if you are diabetic, female, elderly, have had prior heart failure or stroke, or are non-white. They probably should have included jaw, arm or back pain, too!
     Thank you to Jon and Tony for getting back to me on Lanoxin. I will see the doctor Thursday. Bestest, Lee. LeeJRoush@msn.com


Vee's April 11 reply to Doug's April 9, 2001 - Hi Doug and Ben, I guess for me the most puzzling question has become not so much how I feel versus my EF but why some people's CHF seems so well compensated but not others. We need to learn a lot more about that. It's been almost 2 years since I was diagnosed with DCM and an EF of 10 - 15%. I've never had a repeat echo or much other work-up. Sometimes I worry when I learn how much diagnostics others on this forum have had!
     I've never been hospitalized or even missed much work, although I had a few truly terrifying nights followed by many more rag-doll tired days in those first few months. My own theory is that my CM developed very gradually and my body adjusted to it. The down side may have been the price of that adjustment. I think my body's defense systems had been cranking and cranking in overload so my blood pressure skyrocketed, my pulse was in the 120s just walking across the room, and my immune system overreacts to lots of things. The newer meds that interfere with stress response and cardiac remodeling seem to be the key to stopping some of this process.
     I still worry about when the other shoe might drop andalso about getting no warning but not as much as I used to. My best personal indicator is weighing myself regularly to make sure I'm keeping the fluids off. I've become pretty skeptical about the whole notion of prognosis, including why and how docs seem so compelled to give us the bad news when it's based on not very good science at all! maize2001@hotmail.com


Vicki's April 11 reply to Gino's April 7, 2001 - Hi, Thank you for responding to my post. I have been staggering my medications like you suggested. I have also been walking 4 days a week at a brisk pace for 40 to 45 minutes. My heart rate seems to have gone down. It's running in the 70s and sometimes in the 80s, so I am pleased that there's been an impact. I am going to address this issue with my cardiologist though because if there's any way that he will increase my Coreg, I am willing to at least try it. I know that I need to be on a higher dose than 12.5mg per day for my heart to get the maximum benefit. I am a fifth grade school teacher and am not so sure that the stress of my job is good for my condition. I am very tired after 23 years! You asked what my blood pressure is. Well, it runs anywhere from 107/63 to 95/54. Usually it's around 103/65. Do you think my Coreg could be increased? Take care and God bless, Vicki. Snevetsii@aol.com


Vicki's April 11 reply to Julie's April 9, 2001 - Hi Julie, I was glad to read your post but what an ordeal for you! Fortunately, I didn't have to go through what you did. I know all about working when you really aren't able. I have 2 children. I just got one married off last summer and my baby will be a senior at the University of Florida next year. He plans to go on to graduate school in International Affairs and then to law school. That's about 5 more years of college expenses! I need to quit work. I have been a fifth grade teacher in the public system for 23 years and I am soooo tired. As long as my son is doing so well in college though, it is difficult for me to cut the purse strings. Hopefully the Lord is going to open a door for me so I can retire after next year. I know I would feel better. God bless, Vicki. Snevetsii@aol.com


Stephanie, April 11, 2001 - Hi, I was just wondering if anybody else has noticed how the weather affects the way they feel. We are in a rainy, stormy spell and my heart failure symptoms seem worse. Does barometric pressure have anything to do with it? You know how people say they feel the weather in their bones, maybe we feel it in our hearts. Maybe I'm looking for a good excuse. I know that altitude can affect how we feel. Are there any places that are particularly bad? I would hate to plan a vacation and then not be able to breathe. Have a wonderful Easter everyone! Thanks, Stephanie. moodystephanie@hotmail.com


Donna H, April 11, 2001 - Hi, This is my first time to post here. I just wanted to say hi and tell y'all a little bit about myself. I was diagnosed with cardiomyopathy and heart failure about a month ago. I was 36 years old at the time and was in complete shock. My EF was 25%. My doc told me that I have the heart of an 80 year old. I was hospitalized for a few days and they went ahead and did a catherization on me which confirmed my EF and that I have no blockages in my arteries. I have not gotten in to see the heart failure specialist yet but my appointment is next Wednesday, the 18th. I am really looking forward to seeing him since my regular doc has not put me on any type of diet or exercise. She told me not to do any type of exercise for now. I have checked and there are apparently no support groups in my town so I thought I would post to this site. I would like to hear from you. Thanks! dozemp@home.com


Jack's April 11 reply to Donna H's April 10, 2001 - Hey Tracey, I don't know how much sodium the ginger has in it, but it's loaded. It's made with brine just like pickles and you aren't supposed to have pickles. Your symptoms don't sound like salt. It sounds like something else was going on. Jack. maddjak@hotmail.com


Judy, April 11, 2001 - Hello to you all, It's been informative to read your messages. I'm kind of new at this. I went into CHF in January of this year. I'm starting to get adjusted. At first, you're scared and just wonder if you'll wake up. I've got cardiomopathy, mitral valve regurgitation 2-3+ and WPW. The cardiomopathy was caused by a virus. I also have Lupus. I thought it might have been caused by the lupus but they say not. I'm on a low dose of Coreg. He did not change mine. I thought it might be because I'm running a low blood pressure, 90 over 55. My pulse is still up there around 100 or so. I really feel tired all the time. I'm working part-time and I use my energy up on that. I'd rather spend what energy I have on my grandkids but you have to do what you have to do sometimes. If anyone out there is in kind of the same boat, drop me a line. I could use the support. Thank you and God bless, Judy. njhall@bright.net


Ginger's April 11 reply to Vee's April 11, 2001 - Hi Vee, I am surprised that with an EF that low, you have not had at least an echo in 2 years. Somehow that seems wrong to me. How do they know what is going on if they are not doing any other testing either? Maybe you ought to consider seeking a second opinion. At least I would if I didn't have much testing done or an echo for 2 years with a low EF. I have an echo once a year with an EF of 40% (now). Just my opinion. Stay well y'all, Hugs and prayers, Ginger. angelgin@bellsouth.net


Gus R's April 11 reply to Yvette's April 10, 2001 - Hi Yvette, I have episodes with dizziness and lightheadedness like you describe but don't have any answers for you. Like you, I'm sure mine are not caused by getting up too fast. That does happen when I forget to rise carefully but those episodes are much milder and are usually over in a minute or less. The others are something else. They sometimes also include stomach gas, extreme nervousness, hot flashes, muscle aches and fatigue, and usually last close to an hour, sometimes much more. Different dox have diagnosed mine as being due to too much Zestril, too much activity, ear infection, cold or flu, and chocolate. The only diagnosis I thought was close was chocolate. I know I shouldn't eat it but once in awhile I do, and one of my episodes was 6 hours after eating chocolate.
     I've given up on finding a cause or "cure." I actually think mine are a part of my a-fib. I don't have the "bad" episodes every time I'm in a-fib but never have the "bad" episodes when I have a good steady pulse rate. Also, I'm never completely sure if I'm in a-fib or not but any idiot can tell something is wrong when their heart is running like a 3-legged cow.
     I hope someone else has some answers but I wanted to let you know you are not alone with these symptoms. Often I think the current episode is gonna be the end of me but I've had dozens in the past 9 years and haven't had a single fatal one, yet. :-) Best wishes, Gus R. gus13@advancenet.net


Linda S' April 11 reply to Yvette's April 10, 2001 - Hi Yvette, I have the problem that you are describing really often. It scared me at first but I'm getting used to it, I guess. It is not in your mind, believe me. I just had a bad spell and went in to see my doc yesterday. It was the worst yet. My lungs had some fluid and he did an EKG. It was normal so he said all he could find was the fluid buildup. You need to see your doc since I don't know if mine is correct or not. He is my PCP and not a cardiologist. He is very good, but I'm going to see if he will refer me to a cardio doc. I understand about the fear you feel. We all do at one time or another. Just put your faith in Jesus and He will take care of you. That is what has helped me the most. When you feel the uncertainties, keep posting to this site. It has been a blessing to us all. We care about you. In Christ always. linretta@hotmail.com


Bill Moore's April 11 reply to Bev T's April 9, 2001 - Hi, I would like to weigh in on hearing your heart beat in your ear or the loud swoosh in the right ear. I have had this happen over the years and in my case it signals that I have fluid in my lungs. Usually a visit to my pulmonologist confirms this. My problem is that 240mg Lasix boosted by zaroxolyn doesn't seem to hold back the tide of fluid. I sometimes take 150mg Demedex to try to clear it out but that is so hard on my kidneys. Anyway, I have seen this answer about the heart beat quoted by some doctor but I can't find it now. bwmoore@btconline.net


Wendy B's April 11 reply to Stephanie's April 11, 2001 - Hi, I don't know if there's any medical basis but I feel worse in wet weather and in very humid weather, particularly humid weather. I think it's because CHFers have trouble breathing to begin with. I know that I just hate August here in New York City! boozw@hotmail.com


Karen K, April 11, 2001 - Hi, Here is the Url of a site that could be very useful to all of you (us). It allows you to enter foods and find out how much sodium, potassium, etc,..., are contained in given amounts: www.hal.usda.gov. When you reach the site, go into "Publications and Databases" then go to the last item on the list, which is the USDA database for nutrients. And,..., you can even find out how much sodium is contained in sushi-bar ginger.
     I've used this to find potassium content of foods since my potassium level is high. Most of the foods that are good for me are the ones that are highest in potassium, such as most fruits and vegetables. Also, coffee contains 96mg of potassium per 6 oz cup so I've cut way back on my coffee consumption and no longer have orange juice in the morning. Now, that's a shock to my system! I had been eating 2 shredded wheat biscuits (sodium free) but found that the potassium was high so I went to oat bran and then discovered that was also high in potassium so I ended up with Malt-O-Meal and now have found that Rice Chex are low in potassium. A guy has to go what a guy has to do, I guess. Karen. karenk@machlink.com


Jack's April 12 reply to Karen K's April 11, 2001 - Hello Karen and everybody interested in the nutritional database. The url is now http://www.nal.usda.gov/fnic/. It's a very limited database and has no information about foods as exotic as sushi or pickled ginger. So you just have to read the container things come in. If you are in a restaurant, you're out of luck. Jack. maddjak@hotmail.com


Cheryl B, April 12, 2001 - Hi, I have obstructive hypertophic cardiomyopathy. I'm 40 years old and found out that I have this disease in May of 2000. I was doing alright until December of last year when I started feeling really sick. Next Monday I have to have heart surgery - left ventricle outflow tract resection. I hope this surgery works. Right now it's hard to do anything because I get short of breath all the time. I haven't worked in almost 5 months. The doctors don't want my heart rate too high. This disease is really hard to deal with so I just take it one day at a time. I'll get back to everyone when I can after surgery and let you know how I made it through. Thanks for listening. bikrbabe11@hotmail.com


Stephanie's April 12 reply to Gus R's April 11, 2001 - Hi Gus, You made my day! Your discription of your heart running like a 3-legged cow was great. It gave me a good laugh and I needed a good laugh. I know exactly what you're talking about. I've attributed it to atrial fib too but that's just my guess. I have a hard time finding the words to describe to the doc how I'm feeling. I can't wait to use the 3-legged cow description. Stephanie. moodystephanie@hotmail.com


Fred D, April 12, 2001 - Hi everybody, I had to be examined by another doctor at the request of Social Security. He is a surgeon and did not know anything about me, just questions that he was supposed to ask. He was a really nice guy and we had several things in common. He seemed genuinely concerned for me and allowed me to explain exactly how I felt. I have been fortunate as far as doctors go; Everyone has been very sympathetic and supportive of my adversity. I will have to sue my ex-company for my disability benefits and I have to do it in Federal District Court, which is 230 miles away so I have to hire an attorney in Wichita and basically start over again. My attorney did say that he would provide everything and try and find a good attorney - isn't that an oxymoron - in Wichita.
     I have not worked since the last of August and have not received a check since October. In spite of all that, my wife and I are doing well. I have had to cash in my 401K and that was not something I wanted to do but I do not know what we would do without it. I also see a lot of people with a whole lot more problems than my wife and I have. I do believe that it is in times of adversity we come to know our faith and our Lord. I do not have to like what is happening but I have to accept it and deal with it as being the way it is supposed to be. I am not in charge, God is. Best wishes to all at this glorious Easter season. I wish you all serenity and peace. deal@midusa.net


Joe L, April 12, 2001 - Hi, I seem to be having some blood pressure and rapid heart beat problems the last few months. My doc had me get a home BP monitor since my BP has been high when I see him at the office. I have been getting short of breath with a rapid pulse on mild exertion. My pulse rate can go as high as 180 bpm just from using the vacuum cleaner for a few minutes. My doc wants me to check and record my pressure at certain times of the day and when I feel SOB.
     When I am SOB my BP has been as high as 186/129, pulse 168. My diastolic pressure seems to be over 115 every time I am SOB. My meds are Cozaar, Lasix, Norvasc (for mild pulmonary hypertension) and Coumadin. I am not scheduled to see the doc until the beginning of May but I am a little concerned about the high diastolic pressure. I know someone who had high diastolic like mine and he died at age 32 while working out, from a brain hemorrage. His family said they were told a blood vessel in his brain just blew from the high BP. If anyone has any thoughts or comments I would certainly appreciate them. Thanks for listening. JTLucido@aol.com


Ginger, April 12, 2001 - Hiyas, Am I the only one who on a really bad day - when ya just feel awful, tired, in pain, and find it hard to see any end in sight to any of it - have a hard time keeping up their faith? When I read your all's posts and a lot of them are from people who are a lot worse off then I am, keeping up their faith greatly, I find that I don't think I am. Can you tell it's one of those days?! So much for my cheery upbeat attitude, huh?
     As most of you know, besides the heart stuff I fight lower back pain on a daily basis. Well, the last 3 days it's upper back pain and it's a killer. Does anyone else get bad upper back pain where it hurts to even turn your head a certain way? I finally broke down today and got an appointment for tomorrow. Maybe he will know what it is and my frame of mind will improve. I think I could use a few prayers because right about now my kids probably hate me and my poor husband has to put up with me. Thanks for letting me vent. I try not to do it at home since my youngest (age 9) gets scared when I don't feel good. Hugs, Ginger. This sounds a lot like a pity party, huh? Hmmm. angelgin@bellsouth.net


Jon's April 12 reply to Ginger's April 12, 2001 - Hi Ginger, I just have a couple of quick comments. First, please try to approach your 9 year old about how mommy just isn't going to feel good sometimes and its not the end of mommy's world or the child's world either. You simply cannot put the burden on yourself of keeping up a false front to the degree you are right now. It increases the stress on you a thousand-fold. Your child must learn to deal with the fact that mommy is sick someday, right? Putting it off now will make the child's day of reckoning on this issue tougher, not easier. Just my 2 cents worth.
     Working in a lumber mill for 15 years I had my share of back injuries, some pretty bad. You need to try a chiropractor. I mean a real one. If a chiropractor uses a lot of fancy equipment, don't go to him. You want one specializing in spinal manipulation, period, using only heat besides the manipulation. My chiropractor kept me going for years through lots of bad back and neck pain. Again, just my 2 cents worth. Jon.


Jack, April 13, 2001 - Hey Ginger, Since we can't find the answer anyplace else, how much sodium do you contain when you get pickled? Jack. maddjak@hotmail.com


Ginger's April 13 reply to Jon's April 12, 2001 - Hiya Jon, I think you're right on all counts. My 9 year old knows I have a heart condition and every time I have a bad day he thinks it means I am worse. I need to explain it to him better. I had thought of a chiropractor but had heard so much stuff about some of them being quacks that I wasn't sure what to look for in a good one. Now I know. Thanks. :-) My back problems started years ago from transfering heavy patients without the help we were supposed to have. Everyone knows the situation in a lot of nursing homes and that is where I was a nurse's aide at for a lot of years. It's a new day and although I don't feel much better the day seems a little brighter. Thanks for the tips and for all of you listening to me whine! <g> Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Joe S' April 13 reply to Joe L's April 12, 2001 - Hi Joe, Hey, I like that name. I just went through a bout with my BP at 200/130 which scared me to death. Then I took my blood sugar and it was 200. I called a good friend who has multiple problems and we decided it was from eating 4 apples the day before. That sounds weird but I'm sure he was right. He advised me to take a long walk, which I did, and my BP started going down. I cut way back on sugars and the next day all my readings were down 40 points.
     One other major step I've taken is that I just stopped my BP pills and started taking flaxseed oil twice a day. Yes, I know the risk, but I'm tired of taking things which affect my psyche with little or no results.
     Also, for Ginger, Jon is 100% right about going to a real chiropractor. They can work miracles. My BP will drop 20 points after a good treatment and a massage.
     One more thing and I'll close this book. Tests show that my arteries are clear and my cholesterol is below 120, so what in the world is causing my high BP? I am going to a gastrointestinal doc next week to see if it's upper chest gas. Does anyone have any opinions? jes@pronet.net


Karen K's April 13 reply to Ginger's April 12, 2001 - Hello Ginger and Everyone, Oh my, can I identify with you and the pain?! I also have a double curve in my spine, osteoarthritis throughout my back, and chronic pain. Some days are worse than others. I often think my back causes me more problems than my heart. We currently live in a split level house and climbing up and down stairs, which I must do to do the laundry, puts my back into severe spasms. I wake up to severe pain every morning as a result of getting a good (?) night's sleep.
     I've seen several doctors regarding my back; the last doctor said if I were to have surgery he wouldn't do it but rather he would send me to Minnesota for the surgery. Of course, that would need medical clearance as far as my heart problems are concerned. I'm really not sure that surgery is a good option.
     I'm older than you Ginger, and over the past several years I've lost over 3 inches in height. My clothes don't fit as they should. I'm actually quite slender but I can't wear a blouse tucked into slacks with a belt anymore because I no longer have a waist. I know that sounds odd but basically my spine is collapsing and there is minimal space between my rib cage and my hips. I look in the mirror and see a stooped person. I hate it!
     I don't work on Fridays so today is wash day, which means I will be in severe pain by the end of the day. I don't like to be pessimistic but it's a given and there's nothing I can do about it. The only medication I've been "offered" is a muscle relaxant, which I don't take, and NSAIDs, which I understand are not good for folks with cardiomyopathy to take. I was seen at the University of Iowa CHF clinic a month ago and they changed me from Capoten to Lotensin. I have a feeling that at some point they are going to take me off Celebrex, the NSAID.
     I just wanted to let you know I understand. I'm at least fortunate in that my children are grown and out on their own but also, when I mention being tired or in pain everyone blows it off anyway. Karen. karenk@machlink.com


Tony's April 13 reply to Joe L's April 12, 2001 - Hi Joe, Regarding blood pressure, I've been taking my blood pressure an average of 9 times per day for about 32 months, giving me around 8500 readings by date and by time, which I've got stored on my PC, and I do reports and charts. I started keeping records because my BP would soar and my heart would become weak, fast and more erratic for hours or days and I wanted to know what was going on so I could get it under control.
     I found there was a link between allergic reactions and my blood pressure. For instance, I can just touch a piece of dust and my BP will soar and my heart will become more erratic. Certain dyes such as blue dye in new jeans may also cause increases in my BP and cause me heart rhythm problems. I also found that my BP varied quite a bit during the day and was always worse at night. Starting about 10:00 PM, my BP can get really high and I will have increased symptoms. Also, my blood pressure and symptoms will vary depending upon whether it's tree growing, grass growing or weed growing season. I also strongly suspect that my BP is most effected by the level of pollutants and substances in the air. If I don't limit my salt intake, especially snacks like potato chips and pretzels, my BP will be higher.
     By looking at my BP data, I also found out that the meds I was on weren't effectively controlling my BP. I've got a great heart doctor. He worked with my computer charts and reports for many months and adjusted each of my meds until we finally found out which medication was best for me, thusly reducing my average daily blood pressure readings and improving my erratic heart beat. My other symptoms also improved although I have found out that sometimes when my heart is beating weakly, my blood pressure is low. The worst is when my blood pressure is high and my heart is weak and also beating fast and erratically.
     I have found out that my BP is always higher at night from around 9:00 PM through 1:00 AM. So I take my scheduled midnight dose of Verapamil 2 hours early, at 10 PM. Since I've done that, I no longer have dangerously high nightly BP peaks and related symptoms. Also, my blood pressure is lowest about 3 hours after I take my dose of Verapamil and then starts to climb until I take my next dose. Charting my blood pressure by hour really helped me.
     What makes everything confusing is the combination nature of my reactions. A substance, food, pollutant, or environmental change might not cause a significant reaction all by itself but will definitely cause a reaction if combined with another. The complexities probably explain why medical science can't determine what causes high blood pressure in most patients and why many patients don't have their blood pressure under control. The most effective medicine for me is Verapamil. The most effective medicine for controlling my heart rate is Lanoxin. Accupril, Lasix and Nitro SR work with my other medicines to assist in controlling my blood pressure. Verapamil is not normally suggested for those with CHF and there are cautions against it. For me, Verapamil is a wonderful medicine and a blessing, and it works very well.
     Sorry about the long reply. I just thought I would throw out my 2¢. Everyone is different. I think that it is very important to get one's blood pressure under control, especially if one has other heart disease. I don't believe anyone really knows what their blood pressure is doing if they just take it once in awhile so I am happy to see that you have a doctor that wants you to start monitoring yours at home. Good luck with your health, Tony. t0nyt@yahoo.com


Jan R's April 13 reply to Yvette's April 10, 2001 - Hi Yvette, Your dizziness is sounding big warning bells in my head. I have had the same thing; tough to describe, sometimes like a little time warp, blackening around the edges of the world, with my head floating way above my body type of thing, combined with a big whoosh and you go, "Whoa!" The two reasons behind mine were too-high a beta-blocker dose and V-tach. Both can be dangerous. The V-tach episodes were discovered by using a Holter monitor. I recently was gifted with an implanted defibrillator to keep me safe from these episodes. Dizziness is often caused by a lack of blood to your brain. It could be medication but I would sure check on your arrhythmia because that can be fatal, as you probably know. If you're experiencing this more frequently than before, it could be a big warning sign. Then again, it could be something like blood sugar which is not quite so immediately dangerous. Please talk to your doc. Maybe a Holter would be interesting. Good luck, Jan. therowlands@att.net


Bill B's April 13, 2001 - Hi, Thanks to this site and Jon, I have some renewed hope. I was diagnosed as having CHF and was not satisfied with my cardiologist. I went to the CHF specialist page at Jon's Place and found a new doc. We did an echo Wednesday and I don't currently have CHF.
     These people were fantastic. They had all my records, even a copy of my last echo. My meds were wrong and we are going to get that fixed at my next visit on the 24th. My heart is still in bad shape from the MIs and I still feel lousy but given the right meds and maybe a VAD later on I could get really close to normal someday. Just to let you know, that copy of my last echo showed a thickened wall in my heart. The doc says it was probably from the MI. I am pretty sure it was God doing His thing on me.
     The moral of the story is to get a specialist at healing and also get a doc who knows CHF well. God bless and Happy Easter, everyone. Bill B. fedx44@yahoo.com


Barbara, April 13, 2001 - Hi, I would like to know where I can find a CHF specialist in or around my home town. I live in Chatham, Ontario, Canada.
     My history is a triple bypass August 28, 1981. I guess I have outlived many but find this is my second bout with CHF. Mine is what's up front that counts, I have no swelling in my legs or ankles. but I do have a lot of pain in my legs and my MD does not know why. I also have an aortic aneurysm, not large enough to operate but then that is out of question because of the heart. I would appreciate any advice you may have (if I can breathe that long). Barb. babeh@netrover.com


Jack's April 13 reply to Tony's April 13, 2001 - Hey Tony, Don't you think that if you started taking your blood pressure only 4 times a day you would be able to get some sleep and the pressure wouldn't be so erratic? Also, I hear WD 40 works better than flaxseed oil. :-) maddjak@hotmail.com
 
Jon's note: I tried WD 40 - Snorting silicone spray works better!


Robert J, April 13, 2001 - Hi everyone, I just want to let everyone here know that I have set up a voice and text conference place for CHFers. You will need a free program called PalTalk, which you can get from www.paltalk.com. Once you have the program installed, go to the group window and look under the category "Health Related/Parenting." There's a room there called "Congestive Heart Failure Chat." If you don't see it, anyone can open it by using my name - Robert J - by clicking on the "admin" and putting "Robert J" in as group owner and "7756" in the Admin code to open the chat room. If the room is up and you want to join it, the password for the room is "CHF." I will try and have the room up when I'm here at the computer but if not, feel free to open it and use it. You can get up to 100 in the room at one time. Paltalk is a very good voice chat program. You can use text and voice at the same time. I hope to fine all lots of us CHFers up there talking to one another. This is not affiliated with Jon's Place in any way. God bless all of you, Robert J. rjett@vvm.com


Vee's April 13 reply to Ginger's April 12, 2001 - Hi Ginger, You might also want to consider acupuncture for pain control if other things don't work. If my neck pain hadn't become more manageable, I was going to try that. For the rest, I think nurturing people such as yourself also need some of the same nurturing, and just to take a break once in awhile and put your own needs first. Thank you for all the care you continually show for us on this forum! Regarding your earlier comment to me, I'm in an HMO and I'm sure a lot has to do with cost savings and scarce resources. I'd feel reassured to get another echo (well, if the results were good, that is <g>) but I honestly don't see how it would affect any treatment decisions since I'm already on the maximum or therapeutic doses of most CHF meds, and I'm sure I always will be. maize2001@hotmail.com


Vee's April 13 reply to Joe S' April 13, 2001 - Hi Joe, Am I missing something here? You stopped taking your blood pressure meds and you wonder why your BP went so high? With some meds there's a rebound effect when you stop them so your BP might not just get high, but super-high. You need to talk to your doctor about switching meds or dose if that's been a problem, but please don't just stop taking them. This advice comes from a fellow "lifer" on hypertension meds! maize2001@hotmail.com


Mary H's April 14 reply to Ginger's April 12, 2001 - Hi Ginger, I had a double spinal fusion 7 years ago. Before the surgery, I was in so much pain that I pulled my hair out. I was taking Valium several times during the day and it was no help with the pain. Ignoring the back pain I had since I was 13 almost caused me to be paralyzed. My surgeon told me that at 26, I was the youngest patient he had ever done this extensive a procedure on. My disc had ruptured and regrown on the spinal cord itself, causing a reaction like putting a rubberband on your finger and leaving it for several years. Picking up my left leg and moving it was my way of life for a long time. Thinking about it now, it seems scary that I could be in a wheelchair for the rest of my life.
     The test done to determine a blockage is the insertion of dye into the spinal cord. Mine would only go partially down so the tech doing the test thought he could force it throught with a sudden gush of dye. My knees buckled and I had the worst headache of my life. I would go through the surgery again since it meant to walk or not. Find a good orthopedic surgeon and good luck. I did the chiropractor thing and he is the one that told me he could do nothing for me and to go elsewhere. Be sure to take an x-ray first!
     Just a note. I am doing fairly well with my DCM. Currently, I am still med free and go back for a checkup in a few weeks. God bless, Mary H. dwighth@tnweb.com


Ben B, April 14, 2001 - Hi, I've been reading a little about these BNP studies, especially at biz.yahoo.com/prnews/010206/ca_bste_bl.html. What I was wondering is, from reading this information it almost seems like in addition to diagnosing CHF, BNP as a hormone actually behaves a little like an ACE inhibitor. I don't know much about medicine but couldn't this stuff actually be used as a medicine? It says in the article that it is a naturally released hormone that combats the action of neurohormones that are produced in HF. Maybe I'm thinking about this too simplistically. Does anybody know much about this stuff? bdbrinkman@juno.com
 
Jon's note: See this article for starters


Ginger's April 14 reply to Jack's April 13, 2001 - Okay Jack, Tell ya what: Next time I pickle myself I will let you know how much sodium I use! :-)
     Karen, I was on Celebrex and then Vioxx. They raised my BP and made me retain fluid so I do not take them anymore. I had a good back doctor but my insurance changed networks so I had to change docs. The one I went to yesterday almost made me laugh. He tells me my upper back pain is my neck and to use better posture. Okay, I'll buy that but that doesn't do much for the spinal stenosis! Anyhow, he wanted to put me on Medrol, which is a steriod, and a muscle relaxer, which like you I am leery to take. I do have other pain meds but have been on them so long they don't work for this neck pain. I want off them anyhow because they scare me more then some of our heart drugs. You're right about getting blown off for this kind of pain. They do. I am going to try to find a chiropractor who is sincere.
     I tried calling my cardio doc about taking these steroids but he never called me back. That's another first with him. I have lost faith in him anyhow for not following through on some tests he was supposed to do. So here it is 3:00 AM and I am awake becausing my upper back and neck hurt. I feel for you Karen, I know your pain. If I had to do stairs for laundry I think I would find the nearest laundramat. <g>
     Vee, if you feel comfortable with how your docs handle your care, that is what counts! :-)
     Thanks for being here, you all. Does anyone know anything about taking Medrol with DCM or Parafon Forte? That is what I was given. Somehow I don't think steroids are good for us but I could be wrong. It wouldn't be the first time or the last. There is one good thing about being awake at 3 in the morning. It's quiet and in a house full of kids, that's nice! Stay well, y'all. I will let you know how my chiropractor search starting Monday goes. I'll pin the insurance book up on the wall and throw darts at it and go where they land! <g> Hugs and prayers, Ginger. angelgin@bellsouth.net


William B's April 14 reply to Jon's April 12, 2001 - Hi Jon, I didn't know that there many hand chiropracters out there anymore. It seems they all rely on all this electronic stuff. I use to see one that only had a clock in his office - a wind-up one at that - but when he fingered your spine from neck to base he could tell you where the problem was. It was amazing. I think that when the major insurance companies started paying, these $15 visits turned into $75 - $100 visits. The machine may tell them something but they still need to know how to use their hands, not just read a machine. willdet@juno.com


Joe S' April 14 reply to Vee's April 13, 2001 - Hi Vee, I stopped taking my BP medicine because my blood pressure was high whether I took it or not. It was doing no good but was affecting my moods. I am also convinced these doctors know very little about what is causing all this. I think Tony is closer to the truth with this allergy bit. Tony, how did you determine what things were causing the fluctuation? Mine are primarily food items, not breathing. I went to an allergist 25 years ago and went through all the shots and haven't had a breathing attack since. Too much sugar and sodium can really trigger an attack but so can chocolate or peanuts. Do you have any suggestions on how to find out what the others are? My BP is still down 40 points without the meds and taking flaxseed oil. Vee, I greatly appreciate your concern, Joe S. jes@pronet.net


Tony's April 14 reply to Jack's April 13, 2001 - Hi Jack, You asked why I didn't reduce my daily BP readings from 10 to 4, when my BP and other symptoms were far more severe. My response to you is that the prrof is in the pudding! <g>
     Joe S, everyone reacts differently but my BP and related symptoms are affected by apple skin. In fact, I also stay away from carrots and grapes. I am guessing the reaction is to the level of pesticides on these fruits and vegetables. I can eat apples without any problems if I peel them first. I also eat a lot of melons without having any problems at all. t0nyt@yahoo.com


Jim H's April 14 reply to Yvette's April 10, 2001 - Hi Yvette, I know what you are going through with the dizziness when you get and walk. When I stand up, get out of a car, or stand up from bending over, I wait for about 30 seconds before I walk. I learned the hard way. I was walking into the kitchen and started feeling dizzy. I stopped and started to lean against the wall but my knees buckled and down I went. I wound up breaking my ankle. So please be careful and may God bless you. Jim. jimhall@alltel.net


Jim H's April 14 reply to Cheryl B's April 12, 2001 - Hi Cheryl, I read your post of April 12. I also have HCM. I don't believe there a whole lot of us on Jon's site who have HCM. If you ever need to discuss your feelings about this disease I will be more than happy to give you my experiences. I was first diagnosed with IHSS in 1975, so I have been living with this for over 25 years now. I have not had the surgery that you are about to have but I have had a dual chamber pacemaker implanted, a mitral valve replaced and a ring put on my tricuspid valve. May God bless you and guide your surgeon during the operation. Jim. jimhall@alltel.net


Jim H, April 14, 2001 - Hi, I have just been put on Tikosyn due to the fact nothing else has worked in keeping me out of a-fib or atrial flutter, including amiodarone or betapace. Is there anyone out there who is taking this med now (Tikosyn/dofetilide) and could they let me know their experience? This is some scary stuff. They put me in the hospital to start it and watched me for 3 days. Thanks and God bless, Jim H. jimhall@alltel.net


Jan R, April 14, 2001 - Hi all, I want to know if anyone else has quick, sharp chest pains like I do. My doc says they are ectopic beats and nothing to worry about. I recently (less than a week ago) changed meds from metoprolol to Coreg and my ectopy has increased a lot along with lightheaded spells and general awareness of heart beat. Is all this related to Coreg? I'd like to hear from anybody having painful ectopy or pains that they have been told are something else. I don't trust my doc - I am getting a new one. These pains are concerning me. Thanks, Jan. therowlands@att.net


Robert B, April 14, 2001 - Hi, I found this site a few weeks ago and thought I should at least say hi to all of you. I was diagnosed with cardiomyopathy 6 years ago and was retired from my job as a fire chief. I am on my second pacemaker and have had an episode of CHF each year of my disease. Through my faith in Jesus and the support of my wonderful wife, I come back each time with more faith. I have been working with a Christian mission organization - YWAM - for the past 5 years. I can only take short-term missions due to my health problems. My first time out was to Ukraine. I was part of a medical team that took donated US pacemakers to the city of Ternopil. The US doctors taught the Ukrainian doctors new pacemaker implant techiniques. My wife and I were asked to provide the patients with information about heart disease and the use of pacemakers. It was a blessing seeing the patients come out of surgery with a new glow on their faces. Without the service, they did not have much hope. We were in Ukraine for 8 weeks and I worked in several medical clinics as an emergency medical technician assisting doctors. We have worked short-term in Mexico, Ukraine, Philippines, and recently in Fiji. The last time out I came back and suffered an episode of CHF. It took me 2 weeks to recover. God is good and I want to use up the rest of my short time on earth serving Him. Happy Easter, He is risen, risen indeed! Trust Him. rfbecker@tco.net


Jon, April 14, 2001 - Hi everyone, When you click a link in a post, please let the page that opens, load competely before moving around on that page. Most links will take you straight to a specific article after the page has fully loaded. :-) Jon.


Jon, April 14, 2001 - Hi everyone, The following pages on my site have been added or updated. Please note that the "target dose FAQ page" is still under construction, as is the "beta-blocker 2001 overview." Please let me know if you run into any dead links or other mistakes on these pages so I can put the fix on them! :-)

  1. Youth and Heart Failure
  2. Beta-blocker Overview 2001
  3. Medspeak
  4. Target Doses of CHf Meds
  5. Common Sodium Listings
  6. Kitchen Corner, page 2
  7. Let's Cook

Jon.


Tracey C, April 14, 2001 - Hi everyone, My e-mail address has changed to 2tcollins@home.com. I hope everyone has a wonderful Easter. God bless, Tracey C. 2tcollins@home.com


Charles K's April 14 reply to Jan R's April 14, 2001 - Hi, I have had those quick, sharp chest pains too and my doctor also said it was normal for HF and not to worry. I also get vague chest aches or deep pain. He said that this also is nothing to worry about. I don't know about the Coreg but as I increased my Toprol the chest pains became fewer and not as sharp. I know it's hard for me to ignore or accept these chest pains as nothing. I have scared my friends a couple of times when I grab my chest in pain. They of course think it's a heart attack. the_bohemian@hotmail.com


Jon's April 14 reply to Charles K's April 14, 2001 - Hi Charles, As far as I know, sharp chest pains are not usually "normal" for CHF. This type pain may be angina that requires a vasodilator or it may be a signal that you are suffering from blocked or re-blocked arteries to your heart. Even if it is "only" angina, you need to be tested for blocked arteries to prevent a possible heart attack. If your doc is not a CHF specialist, you should definitely see one, and soon. If he is, you should get a second opinion - in my opinion. Jon.


Dee L, April 14, 2001 - Hi Jon, I noted that once your Vo2max was 13.5% and the next year up to 22%. Were you ever evaluated for a heart transplant and taken off the list and if so, do you go for a Vo2max test every year to re-evaluate for transplant? The reason I ask is my third Vo2max test this January was 13.2%, down from 16, from 19. I have just finished going through about 16 different tests as part of transplant evaluation and now they have decided before listing me that they will do another CPX test.
     Why didn't they just do another CPX 2 weeks later and not make me go through all the other tests? I even had a PET scan but it proved there is no viability left in my left ventricle. My MI in 1998 damaged my left ventricle. I lost my LAD and was 65% blocked in the circumflex. I am on 15 different meds and am class 3 with ischemic cardiomyopathy.
     Thank you for any information on why you think they are doing another Vo2max. What is it when with one test you're below 14, the next one above, and the next one below again. Do they list, unlist and relist? deedurham@webtv.net


Jon's April 14 reply to Dee L's April 14, 2001 - Hi Dee, My Vo2max went up to 20%, not 22%. That 22% was a misreading of my patient record by a nurse. I now insist on getting my info straight from my CHF doc. I have never been listed for transplant so I don't have any personal insight into the process. My CHF doc rather forcefully suggested it at one point when my cardiac output dropped abruptly but I refused to be listed and eventually got better with meds juggling.
     My local heart transplant center is in the middle of changing cardiology team affiliations and I can't get any info out of the new people so I'll have to wait for the new center to be up and running to get my questions answered. Shouldn't be long.
     I have no idea why they test when they test or how they list when test results change. I do know that my CHF doc was (and soon will be again, I am sure) a Director of Heart Transplantation and he does not list patients strictly by any test data. He plays it by "feel" as much as by numbers and has had excellent success with that method. He has a lot of experience, though.
     Sorry I can't help. I do think you'll find that different centers use different standards. They all adhere to certain broad guidelines but the details differ from center to center and from doctor to doctor. I have heard of patients getting listings by number that do not officially exist according to UNOS so they all definitely have their own methods. Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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