The paperwork never ends The Archives
July 1-15, 2001 Archive Index

Ruthie A's 7-2 reply to Linda Z's 6-30     different beta-blockers, diastolic dysfunction
Cathy 7-2     seek ICD & SCD info
Pam A's 7-2 reply to Ben B's 6-30     doctors, numbers, and thanks
William B's 7-2 reply to Jon's 6-30     doctors, drugs, trials and more
Jon's 7-2 reply to William B's 7-2     doctors, drugs, trials and more
Jim B 7-2     are salt substitutes safe?
Michael 7-2     has anyone had a liver biopsy?
Jon 7-3     opportunity to tell your story
Mark 7-3     intro
Karen K 7-3     tests, CHF dox & more
Mary A's 7-3 reply to Jim B's 7-2     salt substitutes
Maggie 7-3     seek info on what numbers mean
Brandy 7-4     seek Toprol XL experiences
Ginger 7-4     new heart forum Url for kids & family
Amelia 7-4     beta-blockers & more
Jon's 7-4 reply to Amelia's 7-4     Toprol XL vs metoprolol
Will 7-4     how to tell if this is edema or not?
Jon's 7-4 reply to Will's 7-4     edema, fluid retention
Pati F 7-4     seek RSV experiences or info
Joe S' 7-5 reply to Will's 7-4     living with CHF
Tim S 7-5     can I avoid shaving my chest?
Roz W's 7-5 reply to Pati F's 7-4     RSV
Amelia's 7-5 reply to Jon's 7-4     metoprolol confusion
Jon's 7-5 reply to Amelia's 7-5     metoprolol confusion
Loretta 7-5     to Jon
Jon's 7-5 reply to Loretta's 7-5     mortality, donations & more
Vee's 7-6 reply to Jon's 7-5     extended-release beta-blockers
Jon's 7-6 reply to Vee's 7-6     I honestly don't know
Pauline M 7-6     seek others with right-sided heart failure & more
Tracey C 7-6     company really ticked me off & a question
Jon 7-7     to Greta
Jon 7-7     a new page, and more
Joan 7-7     is anyone on a calcium channel blocker?
Heinz R 7-7     intro, contrast dye reaction
Pauline 7-7     seek CHF doc in northern Delaware
Tracey C 7-7     e-mail address correction
Sammy L's 7-9 reply to Heinz R's 7-7     allergic reactions & more
Dorothy's 7-9 reply to Joan's 7-7     calcium channel blockers
Pat Y 7-9     some humor is a good thing
Pauline 7-9     seek neck cath info & experience
Jon's 7-9 reply to Pauline's 7-9     Swan-Ganz cath
Tracey C 7-10     left-over meds
Jon 7-10     back to normal & more
Amelia 7-10     when do I call my doc & which one?
Donna 7-10     has anyone stopped taking meds? & more
Michael 7-10     update on liver function
Sammy L's 7-10 reply to Donna's 7-10     getting some people on your side
Amelia's 7-10 reply to Donna's 7-10     stopping meds bad idea - my experience
Larry 7-10     does anyone else like to fish?
Fred D 7-10     are potassium supplements the same?
Jon's 7-10 reply to Fred D's 7-10     nope
Jon 7-11     a good service, note
Mary A's 7-11 reply to Donna's 7-10     a new doc maybe a good thing
Ginger's 7-11 reply to Donna's 7-10     stay on those meds & more
Jon 7-11     exercise programs and weight loss
Thelma's 7-11 reply to Donna's 7-10     treatment, weight and more
Jerald D 7-11     does anyone take pentoxifylline?
Donna's 7-12 reply to Sammy L's 7-10     losing SSI, thanks & more
Mark 7-12     depression & Coreg questions
Jon 7-12     page updates
Karen 7-13     if your hair falls out on Coumadin, read this
Mike W's 7-13 reply to Mark's 7-12     beta-blockers & depression & more
Jim L's 7-13 reply to Mark's 7-12     depression and beta-blockers
Karen N 7-13     update, healing touch, stay on meds
Stephanie's 7-13 reply to Mark's 7-12     depression and heart failure
Sammy L's 7-13 reply to Donna's 7-12     depression, financial difficulties, venting
Joe S 7-13     what happened?
Sharon P's 7-13 reply to Mark's 7-12     with time, Coreg gets easier
Sheryl's 7-13 reply to Mark's 7-12     coping
Randy S' 7-13 reply to Karen N's 7-13     spironolactone, living with CHF
Bill B 7-14     what do I tell my daughter?
Mark 7-14     thanks to everyone
Alexis 7-14     nervous about outcome - any comments?
Jon's 7-14 reply to Alexis' 7-14     hope others reply
Michael 7-14     seek Coumadin users' experiences
Trisha R's 7-14 reply to Joe S' 7-13     sun exposure very hard on me too
Sherrell G's 7-14 reply to Bill B's 7-14     talking to your teens about your CHF
Ginger's 7-14 reply to Alexis' 7-14     my CHF experience
Yvette's 7-14 reply to Bill B's 7-14     talking to your teen about your CHF
Kathleen T 7-14     questions - CoQ10 dose & hurting feet

Ruthie A's July 2 reply to Linda Z's June 30, 2001 - Hi Linda, My CHF doc explained that I had the same problem you have: my heart doesn't rest between beats so there is not enough blood entering the ventricle to be pumped out. My EF is 55% and hasn't changed in the over-3 years I was diagnosed with CHF. Because my left atrium is constantly working, it has become musclebound and therefore cannot do its part anymore. This is called diastolic dysfunction, according to my CHF doc. It is most common in women who have had long-term untreated high blood pressure, tend to be overweight, and are an average age of 99. I fit the profile exactly except for the 99 part. <g>
     On the beta-blocker theme, I asked my CHF doc about switching from atenolol to Coreg on the first visit I had with him. He checked my previous records and then checked me over thoroughly before giving his answer, "Why fix something that isn't broken?" So I have been successfully using atenolol without side effects for over 3 years now. When hubby became unemployed and we no longer had insurance, my CHF doc gave me Toprol XL as a reasonable substitute for atenolol. Atenolol is not included in the manufacturer's indigent drug program, nor is it provided in sample form to doctors. If a patient takes it, he must purchase it in the pharmacy. Granted it is inexpensive in generic form but when you have no income, any expense is expensive so I switched to the Toprol XL.
     On the second day I started feeling rather ill, so my parish nurse took me to the ER. I was immediately rushed into the trauma unit, examined, prodded and poked, and never left alone for a moment. I don't remember much of what happened because I was trying to have both a heart attack and a stroke at the same time. Testing and doctors' deduction concluded that I had a serious reaction to the Toprol XL, a rare occurance at best. Needless to say, I immediately went back on atenolol and have been a happy camper ever since. I don't think I want to try Coreg. <g>
     So Jon and the others are correct. Medications and our responses to them are very individualistic. What works well for one may be a failure for another. What keeps one patient alive may kill another. It's all a trial and error way of practicing medicine but it's the only method that works, Ruthie A.

Cathy, July 2, 2001 - Hello everyone, Does anyone have any info on clinical studies dealing with heart failure ICDs and sudden death?

Pam A's July 2 reply to Ben B's June 30, 2001 - Hi, I am like you, Ben. I never knew what my EF was until I read this site. I had never even heard of EF numbers before. Like you, I had to ask my doctor what my number was. All this, after spending 9 days in the hospital being tested for a possible corrective surgery. My cardiologist said it was 75%. He also said the number wasn't important in my case and that CHF was a catch-all term for different heart problems. Since reading this post, I have decided to find a new cardiologist. He is a waste of time and doesn't even come close to my primary care doc, who is on top of everything. I like the specialist but not as a doctor. Since finding this site I have become a little braver with my care. Thanks to all who share their info with us.

William B's July 2 reply to Jon's June 30, 2001 - Hi Jon, Point made, that all rating are arbitrarily arrived at by some contrived standards. All we are to the pharmaceutical companies is a dollar sign on the bottom line. We are the point on the declining cost curve that intersect the revenue line that recovers the R and D spent on that particular drug, nothing more. We are taking a cost efficient drug. Priced high enough with enough people taking the drug to make a profit in the shortest amount of time. Being a contrarian I would be more interested in why the 5% of doctors did not like Coreg. SmithKline's own report states that doseage must be individualized with 25mg max dose for 85 kg weight of person taking it. Does one kg increase in weight more than double the dosage and double the effectiveness? The report states that 50mg should not be exceeded. That any increase in dosage from the 6.25mg levels (if needed and tolerated) should be adjusted if symptoms of worsening heart failure, vasodilation, or bradycardia occurs in orded to determine tolerability of Coreg. The reports gives additional warning about diuretic producing additive effects and exaggerate the orthostatic effects.We need to get our pen and pad and keep a log on what we take and how we feel. Question the doctors about these new drugs and our interaction with them. William B.

Jon's July 2 reply to William B's July 2, 2001 - Hi William, I agree completely about tracking one's symptoms and possible side-effects and discussing them at length with one's doctor. We are certainly on the same page there.
     However, I am not sure what your point actually is with the Coreg "report" quotes (I assume they are quotes). I have compiled entire lists of potential side effects, warnings, and tips about Coreg, and posted links to them clearly on my Coreg page. I am also confused by your statement that 5% of doctors do not "like" Coreg. I won't address what I don't understand.
     I will address your comments on dosage and trials. I think I got your drift on those parts, although I could easily be wrong. In short, I think you are saying that trials are generally untrustworthy primarily because drug companies only do trials to make their products look attractive, and that as patients, we should better know than trials what dose gives what benefit. That's what I'll address anyway.
     We are indeed profits in the eyes of drug manufacturers. However, we are also dollar signs to the makers of all the conveniences and necessities of life that we must purchase in order to use. Drug makers are no different in this respect than any other manufacturer. Condemn one and you must condemn all on this score. Companies exist to make money. This isn't going to change and if it did, there would probably be no drugs at all for us to take.
     I don't see any relevance in saying that standards for trials are contrived. All standards by which any endeaver is measured are contrived since someone planned them. You can assume that those planners are doing it for a purpose other than that which they publicly state if you wish. However, they make no bones about their desire to turn a profit, so they are certainly not hiding their motive for being in business.
     Keep in mind though, that they have so many people looking over their shoulder when they do drug trials, it is somewhat difficult to believe that we should disregard the trial results only because researchers who plan them are financed by the drug manufacturer. Required disclosure aside (required for all drug trials), please note that university research has been proved far more tainted than drug manufacturer-funded research in the past 5 years, with some university researchers barred entirely from further research because they were only out to make money under the table and out of sight. They falsified or hid results toward that end and in some cases people may have died from their desire to profit even though they publicly declared themselves academics doing research only for the good of mankind. You don't see that in the maufacturer-funded trials to nearly the same extent. Why? Because of all those eyes watching, watching, watching. An openly declared motive of profit in no way invalidates - or validates - results.
     I am thankful drug companies are out to make a profit. Why? Because it makes them willing to do all they can do to prove their products' effectiveness, including the massive number of burdensome things society forces on them in order to make that profit. This in turn requires that they submit themselves to close public examination at all steps along the road to marketability.
     Non-profits (some academic researchers) tend to do as they please, whether it is good for you and me or not. Academic safety monitoring is a joke and everyone knows it. The for-profit companies are much more closely monitored, by committees that may move slowly - or not - but that have the power to shut down a trial immediately should they choose. Immediate shutdown is an option exercised more often these days by such committees so we can see that such monitoring - even if imperfect - is not completely ineffective.
     Obviously all trials of drugs, surgeries, non-medical therapies like EECP, and more should be viewed with an educated and wary eye, but to throw them out the window is uncalled for. To do so, one must surely believe that all studies done by, or involved with, people holding a financial stake in the result should be likewise trashed. That would include consumer safety studies, historical overviews, financial studies that guide millions in their estate and investment planning, exposés done "for the public good" by newspapers and other media, and so on. These authors all have a definite financial stake in a certain result. Does that invalidate their results? Where does one draw the line once one considers anything profit-driven inherently untrustworthy? And, who do you trust to draw those lines for your good and only for your good? Government? Industry? Academia? Community leaders? Patients themselves?
     As to dose, I am confused by your statements. Should we set no dose to be studied? How then do we study any drug? How do we set forth guidelines informing us of safe levels at which to start therapy for certain patient groups? That is exactly what these guidelines are - guidelines! They do not say that all patients over a certain weight should somehow be coerced into taking a specific dose and no other. These doses are where researchers drew lines so they could study a large enough number of patients to get a statistically accurate result. Should we expect them to study every single possible dose, one milligram at a time?
     The chosen doses are based on phase 1 and phase 2 trials - they are not pulled out of a hat. Certain dosages must be chosen for study - it is that simple. Those dosages are the only points at which conclusions can be drawn with any certainty. This is a scientifically sound method and the way studies must be done if they are to be accurate.
     I doubt that any forum has so often asserted as this one, that proper dose is highly individual. Different people tolerate different doses differently. However, we need to know a relatively safe dose at which to start each patient; a maximum dose beyond which is a sign stating "There be Dragons!" because it is unknown territory; and a proven benefit at that chosen, studied dose across a large patient population. The Coreg doses used in trials have proven benefits. From there, one would certainly hope that each doctor is wise enough to adjust dose to appropriately treat each of his patients. However, he certainly welcomes a guideline at which to start, with proven benefits.
     Once you wonder away from that proven dose, you no longer can state with certainty that most patients will get a specific amount of benefit from another dose. Why not? Because it has not been proven. What gives benefit xyz in one patient may kill another, yet have no effect at all on a third. That's why trials establish guidelines and target doses. These are not intended to be absolutes in any sense. What they do is lay down the proven benefits across large patient populations for specific drugs used at specific doses. That is the function of a trial.
     PS. I hope all drugs are cost-efficient. It may not be possible but it's a good goal to shoot for since it keeps the health care system that maintains my precarious health solvent and ongoing. Jon.

Jim B, July 2, 2001 - Hi, Are the no-salt substitutes with potassium chloride safe to use?

Michael, July 2, 2001 - Hi, I just had a liver biopsy on Tuesday, the 26th of June. It was not made clear to me just exactly what they might be looking for. I know that when I was first hospitalized for DCM my liver function was high and no one knew exactly why. After a myriad of tests, all negative, they still had no answer. The biopsy seems to be a last ditch attempt to find a problem. Has anyone else had such an experience? If so, any comments would be appreciated. Thank you.

Jon, July 3, 2001 - Hi everyone, This came in from David Ansley, of the BMJ Publishing Group and I am posting it so anyone who maybe intersted can get involved. :-)

     "Hello, I'm an editor with the BMJ Publishing Group, a London-based publisher of medical research and health information, including the British Medical Journal. We're in the early phases of building a new web site in the U.S., and I'm hoping that you might know people who would be willing to contribute their stories to it.
     The site, which is in pilot development right now, is a joint venture between our group and United Health Group, based in Minnesota. It's aimed at improving doctor/patient discussions by providing rigorous medical information based on clinical evidence. Our hope is that both doctors and patients will turn to, and share, this sort of information if it's written in lay language but researched to the highest medical standards.
     To complement this clinical evidence, we hope our users will provide their own experiences with their medical conditions. Medical studies often don't cover the real-life issues that matter to patients, and we want a forum where patients and doctors can discuss them. We hope to launch our site with a few dozen patient stories already in the Your Experience section, to set the stage properly.
     What I'm wondering is whether you know of a few people with heart failure who would be willing to spend a few minutes answering our questionnaire. It's basically 4 open-ended questions about their experiences with diagnosis, treatment and life with the condition. We won't be using their real names or email addresses, but we will be asking them to give us a nickname we can attach to their story, along with their age and occupation.
     If you do know people who'd participate, I'd appreciate it if you could put me in touch with them or forward this note to them. And if you have any questions about the project, I'd be happy to tell you more about it. Thank you very much, David Ansley, U.S. Web Editor, Unified Ltd., BMJ Publishing Group."

If you are interested, please e-mail me and I will forward your message and your e-mail address to him. Jon.

Mark, July 3, 2001 - Hi, I'm new to this site after being diagnosed last month with DCM. After I was initially diagnosed I read all the info on the web about DCM and after seeing that I only have 1 to 3 years to live was really depressed. This site has helped though. I now know that a lot of other people are experiencing this and maybe from reading most of the posts, I won't be dead in 3 years. I feel good and have no symptoms at all. I can do up to a half hour on a treadmill from 2 to 3 mph without getting winded. I was told my EF is 20 to 25% and have been put on Altace, Coreg, and Plavix (a TIA is how I initially found that I had DCM). I want to go on and on here, but just wanted to say hi and wish everyone the best luck, Mark.

Karen K, July 3, 2001 - Hi Jon, I want to thank you for your response to my questions regarding the tests I have never had. I know that you think it is very important that we be seen by heart failure specialists in lieu of internists or cardiologists. I was concerned because other than adjusting my meds slightly and the fact that I'm seen more often and have blood work each time I'm seen, I guess I had anticipated more tests than I had received when I was being treated by a doctor of internal medicine. However, I do appreciate the fact that I am seen more frequently and blood work is always a part of the appointment. In addition, I have 24/7 access to a nurse coordinator who is assigned to my case. I see her each time I see the doctor. The only downside to this is that I have to drive an hour each way for the appointment. My guess is that were there to be an emergency, I would head for the ER here in town, call the nurse in Iowa City, and wait to see whether they wanted me to be transferred there. I am more comfortable that I have my virtual foot in the door at the virtual hospital (no kidding, put the words "virtual hospital" into a search engine and you'll find their hospitals and clinics.). Thanks again, Karen.

Mary A's July 3 reply to Jim B's July 2, 2001 - Hi Jim, All I know is that on my potassium bottle it says plain as day not to use salt substitutes. I hope that answers your questions.

Maggie, July 3, 2001 - Hi Everyone, A happy and safe July 4th to you all. I'm wondering if someone can tell me what is normal in a MUGA scan? I have found the description of the test but not what the numbers mean. Because my echo has shown my EF to be going down even though I have been on Coreg for 2 years, I am sheduled for a MUGA on Monday. The echo shows my EF to be 10 to l5% now. My cardiologist wants a more accurate number. Thanks Jon, for all your work on this site, and congratulations to your daughter on all her accomplishments, Maggie.
Jon's note: The EF number is explained here

Brandy, July 4, 2001 - Hi Guys, Since the doctor changed my medicines 2 weeks ago I have been having several dizzy spells, even when I am sitting down. If you are on Toprol XL can you tell me some of the side effects you have experienced on it? How long did it take to adjust to it? Thanks for calming me. ;-) Brandy.

Ginger, July 4, 2001 - Hi y'all, My 15 year old daughter has started a forum for kids who have parents with DCM and CHF. So if any of you have kids that you think might want to talk to other kids about this, I am going to give the Url for it. I am proud of my daughter for wanting to do this. Maybe it will help her in understanding she is not the only kid that has a parent who is "sick" too. Anyhow, the Url is Hugs and prayers, Ginger.

Amelia, July 4, 2001 - Hi everyone, Here's wishing all of you a very happy 4th and praying we all will be able to celebrate many, many more. Hopefully, I'll be able to stay on top of the meds. I am now on amiodarone (Cordarone), Vasotec, Coumadin, and lasix. My CHF doctor will put me on a beta-blocker in 2 weeks. Iam trying to read all you have to offer regarding meds. Metoprolol is generic for Toprol XL and Lopressor,and Iam getting confused as to why one cannot tolerate metoprolol but can take Toprol. I want to find out all I can so when I get a script for a beta-blocker I will know what is right for me before I purchase the meds. I was on Lopressor a few years ago and it did make my CHF worse, but again, is there a difference of reaction to the generic?

Jon's July 4 reply to Amelia's July 4, 2001 - Hi Amelia, This can be confusing. First, remember that generic means a drug that is precisely equivalent to the brand-name drug but made by a different company. A generic version is the exact same drug, even though a few people will react differently to it than they do to the brand-name version.
     There is no drug named Toprol. The drug you are thinking of is Toprol-XL. The "XL" part of the drug name is important. Metoprolol is not the same as Toprol-XL. Metoprolol is actually metoprolol tartrate, while Toprol XL is metoprolol succinate extended-release. Metoprolol (Lopressor) is a short-acting drug that must be taken multiple times each day, while Toprol-XL is taken once a day; However that is not the only difference between the 2 drugs. Toprol-XL is far more efficient at beta-blockade than an equivalent dosage of "regular" metoprolol.
     I don't think there is a generic form of Toprol XL yet. You can always check the FDA Drug Approval page for such info, though. Jon.

Will, July 4, 2001 - Hi, I was just curious as to whether any others out there with DCM have had problems with their stomach, such as indigestion, heartburn, and bloating. I now assume that much of this is from fluid retention but have not had a sufficient answer from my cardiologist. He doesn't believe it is related to my heart condition. How do you know for sure if what you have is fluid retention anyhow? I definitely get "bloated" in the abdomen region quite often, but have never had the swelling in my ankles or legs. Two things that make me think it is related are that it started almost immediately after I started getting my other symptoms, and it seems to happen more often when I am run-down. Perhaps I've just answered my own question.

Jon's July 4 reply to Will's July 4, 2001 - Hi Will, One way to decide if it is related to edema is that daily weighing we must do each morning in just our skin. If your weight is up 2 to 3 pounds on any given day, you are almost certainly retaining fluid. My edema always hits me in the abdomen or face first. Jon.

Pati F, July 4, 2001 - Hi everyone, I've been asked to be in a study of RSV in people who have chronic heart disease and/or respiratory problems. I have DCM and CHF that was first diagnosed 2 years ago. It seems I learn more on this site than any other I have ever visited. Kudos to Jon and all the great people who post here. RSV (I can't remember the medical term) is a virus that usually only shows itself in the very young and sometimes the elderly. They want to send a nurse to my home when I get sick in the fall or winter, which always happens, who will take a nasal swab and blood samples. I just wondered if anyone has more info on RSV and its presumed role in heart failure. Pati.

Joe S' July 5 reply to Will's July 4, 2001 - Hi Will, I was diagnosed with CHF almost 3 years ago but have had a bad heart now for 56 years. When diagnosed and given 3 months, I naturally decided to change my life and found this site. I did everything everyone said and lo and behold, no more CHF. I still have a bad heart but no more edema. The first week with diuretics I lost 15 lbs. Now, 3 years later my legs, hands and abdomen are much smaller. When I eat wrong, like potato salad last night for the fourth of July all symptoms make a reoccurance a little. I know what's wrong but still do it now and then telling myself a little won't hurt, but it does. I judge if I've eaten wrong by how bloated my stomach gets and if I can't breathe in the morning, like right now at 3:30 in the morning. Good luck, Joe S.

Tim S, July 5, 2001 - Hi, My doctor wanted to hook me up to a walking electrocardiogram monitor for a day. This involved shaving my chest, which I'm reluctant to do in the summer. Does anyone know a way to get the electrocardiogram leads to stick to a hairy cest? Thanks, Tim.
Jon's note: They can use the screw-in electrodes, but trust me, they hurt.

Roz W's July 5 reply to Pati F's July 4, 2001 - Dear Pati, You have probably already discovered what RSV means, but here's one more reply. Respiratory Synctial Virus causes pneumonia and bronchitis, usually in the fall and winter, and especially in the elderly. It is infectious through touch and breathing infected droplets, and although immunity does build up, repeat infections can occur. Volunteering a few swabs in the interest of others may be, as Martha Stewart might say, "a good thing." Thanks and best wishes from an elderly Roz.

Amelia's July 5 reply to Jon's July 4, 2001 - Hi Jon, Yes, I can see how confusing drugs are for the layman. It is Toprol-XL, I just forgot to add the XL, which as you said is very important. I called my pharmacist and he repeated that metoprolol is the generic for Toprol-XL but yes it has a different reaction. As you said, it's extended release so even though it is the same drug, the brand name Toprol-XL should be made clear on the script if that is what the doctor wants and not metoprolol non-extended, which would have to be taken more often. I get more accurate info from you and your forum then the med books and drug books.
     Regarding fluid retention, I also have to bring to the doctors attention my abdomen and face since the first place he examines are the ankles. Amelia.

Jon's July 5 reply to Amelia's July 5, 2001 - Hi Amelia, That pharmacist is both right and wrong. Because this is so confusing, I'm going to try to go into a little bit more detail this time, but hopefully without getting carried away. ;-)
     Metoprolol (Lopressor) has not been approved for use in heart failure; Toprol-XL has been approved for CHF use (February 6, 2001). Only Toprol-XL and Coreg are currently approved for CHF in the USA. Toprol-XL was the drug studied in MERIT-HF - not metoprolol. See the Coreg page for more (let it load).
     The manufacturer's printed prescribing information to doctors and pharmacists also states that at low dose: "extended release metoprolol succinate produced significantly higher total beta-1 blockade over 24 hours than immediate release metoprolol." They go on to say that:
     "In comparison to conventional metoprolol, metoprolol blood levels after taking Toprol-XL show lower peaks, longer time to peak level, and significantly lower peak to trough variation. The peak blood levels following once daily Toprol-XL average 1/4 to 1/2 the peak blood levels shown after a corresponding dose of metoprolol, given either once daily or in divided doses." So, while these two drugs are roughly equivalent in overall performance, there are significant differences that may be quite significant to us heart failure patients.
     Metoprolol is not a generic form of Toprol-XL! Metoprolol is a generic form of Lopressor. Neither Lopressor nor metoprolol are approved for heart failure use in the United States as far as I can tell. AstraZeneca's patent on Toprol-XL lasts until 2004, so there won't be a generic form of Toprol-XL until then. On February 6, 2001, the FDA added CHF as a reason to prescribe Toprol-XL. That added "indication" was not made for metoprolol.
     If I am wrong, someone please tell me now so I can correct this information on my site. Jon.

Loretta, July 5, 2001 - Hi Jon, This is an open letter to you. You don't know how much I appreciate the information you have put together here. There is more information in your articles that I have found in all my searches put together. I especially like the way you go into detail and openly discuss the truth. By reading your articles I now trust my Cozaar and know how important it really is.
     I have been trying to find out what my expected mortality rate might be. Do you know a ball park figure so that I can plan my life? Indirectly, some of your articles (reading about ACE) gave me some indication. Do you have any additional article that are more precise on this subject?
     I don't know if this is possible or not but if you put shopping links on your page (the ones where you could get a percentage of the purchase) I would like to use them. Maybe this money could help in all the effort you have put in for all of us. Thanks.

Jon's July 5 reply to Loretta's July 5, 2001 - Hi Loretta, Thank you. Unfortunately, I really, honestly do not have information that even makes a really good guess at mortality for any given group or subgroup of heart failure patients. If it is out there (reliable info, that is), I can't find it. I am sorry.
     For my own personal life, I plan for the worst but live for the best. I have all my software in my wife's name, etc,..., so when I die, she doesn't have to see my name all over everything, I have my will done, I have ensured that my life insurance is maxed out and will not be denied since I could never get a new policy, and so on and so forth. However, I live in my day-to-day life as though I will be here 20 years from now. Attitude, as they say, is everything. <g>
     I really don't want to accept money on a regular basis for this site. This isn't the kind of site that can support me and doing it mostly on my own - paying for the privilege - keeps me honest and prevents my direction from being "tainted." Besides, the readers here have always responded with incredible generosity when I was in a specific fix for dollars, donating everything from CPUs, video cards, and even an entire computer system, to generous cash gifts to keep the site going.
     If I am in need to keep the site afloat, I promise I will ask. Until then, I'm cool. Jesus has given me an opportunity here to do something truly useful in His behalf (and with His help!) and I am both honored and obligated to do so. Thank you for asking! :-) Jon.

Vee's July 6 reply to Jon's July 5, 2001 - Hi Jon, I'm just wondering why there's no extended release form of Coreg or if it might be in the works? Coreg's effect on slowing my heart rate seems to persist fairly well but not entirely in keeping my blood pressure down. In fact, there can start to be a rebound effect after 9 or 10 hours that's troublesome, since I'm also taking the stuff for hypertension control. I don't want to be making my blood pressure worse, even if it's only for a few hours of the day.
     If extended release lessens the peaks and troughs with Toprol, why not something similar for Coreg? As far as distinguishing metoprolol from Toprol-XL, I think some of the confusion is that while they're not the same drug, metoprolol is present in both meds, although in somewhat different form. Isn't it the active ingredient in Toprol XL as well?

Jon's July 6 reply to Vee's July 6, 2001 - Hi Vee, Excellent questions for which, unfortunately, I have no answers. <g> I don't know if Coreg will ever be developed into a extended-release formulation or not, but you're right that it could smooth things out for certain patients.
     The metoprolol thing is very confusing. You're right that metoprolol is the active ingredient in both. Because the FDA lists them as equivalent, pharmacists and even doctors confuse CHFers by not explaining (because they are not aware of) the subtle differences that are not always so subtle to our weakened hearts. Jon.

Pauline M, July 6, 2001 - Hello everyone, I hope someone can help. I have read several of the posts and some information on this site, and I notice that most of it deals with heart failure affecting the left side of the heart, eventually spreading to the right side. I have right-sided heart failure with pulmonary hypertension, secondary to an ASD, which was repaired in 1997 along with two bypasses. I would appreciate hearing from anyone who has been diagnosed with right-sided heart failure.
     What is the difference in treatment, symptoms, medications, and tests? I have heard that right-sided heart failure is more difficult to treat than left-sided CHF. Is this true?
     At the moment, I don't have a cardiologist. The one I had kept insisting that my edema and shortness of breath were not related to my heart. Last August I was so short-winded and turning blue and full of fluid that I was admitted to the hospital, given IV diuretics, and lost 13 lbs in 2 days. All the doctors said I had heart failure except my cardiologist. He still said it wasn't related to my heart. Then he told me to get another cardiologist. The few I've seen since are very cold and impersonal and don't seem to take me seriously.
     My symptoms continue to increase, with edema in the abdomen, ankles, and legs; shortness of breath; loss of appetite; chest pain; and cough. I'm on Cardizem, Lasix, Inderal, Lipitor, baby aspirin, potassium supplement, and Axid. I feel so bloated and uncomfortable. I am beginning to wonder if I will ever find a knowledgeable cardiologist with a good bedside manner. I would be grateful for any suggestions. Pauline.
Jon's note: If you are comfortable posting your city, maybe someone reading will know a good CHF doctor there.

Tracey C, July 6, 2001 - Hi everyone, I have a complaint about a company I've been dealing with this morning and just wanted to vent somewhere where others would understand. I found this great pasta sauce at our market called "Boves of Vermont." It's a bit high in sodium but it works into my day okay. So I went online and they have a web site with other flavors you can order direct. They didn't list the sodium so prior to ordering I e-mailed the owner, who responded that one of the flavors has only 180mg per serving. So I ordered 4 bottles.
     I got them yesterday and the sodium is actually 290mg per serving. I e-mailed him this morning, with his prior attachment showing he said 180mg per serving, and asked if anything could be done about the mistake, such as reimbursing me for shipping. He called my house and left the nastiest message, which included his statement of "If you actually have congestive heart failure, perhaps you shouldn't be eating pasta sauce at all." He really made me very angry. There was no offer of any kind to rectify the situation. Again, I know it's a bit higher sodium but I just wanted to let you know how I was treated by Mark Bove himself, aka
     On another note, my fingernails turned gray for awhile today. Circulation? Thanks a lot for listening, Tracey C.

Jon, July 7, 2001 - To Greta, I cannot reply to you because your e-mail address is invalid, per your host domain's POP system. LDAP lookup failed. I have received no - repeat, zero - posts from you. Jon.

Jon, July 7, 2001 - Hi everyone, I apologize for being, shall we say, hasty, the past week or so. After finishing the extensive pages on target dose and routine testing, I have been busting my hump for over a month to finish a page that I consider vital to CHF patients. It is the third and final building block of my basic web site.

The Manual
The first building block, The Manual, tells a person ways to live with heart failure and lets him know what to expect - in general.
Heart Failure
The new page, entitled simply Heart Failure, tells a person all about heart failure, the disease, so he can understand what is going on with his body.
The Beat Goes On
Of course, the final necessary page for my site is the one you are on now, The Beat Goes On. This page lets you talk to real people who can describe all the individual variations and subtleties that doctors rarely understand. It's also the place to vent where everyone will know what you mean!

I know not everyone will view this new page (or the others listed) as so important but I do. ;-) It took me years to find a complete, detailed, medically accurate basis for the Heart Failure page. Then it took me forever to cut it down to size, edit it, and get it ready for prime time. It needs one more edit but I have worked on it so long and hard already that I am burned out. I'll wait a month or so and then do the final edit. It is, however, ready for you to read (I hope).
     Please tell me of any mistakes or possible mistakes you find on the new page, including misspellings, dead links or anything that is just plain wrong. The only way I can fix my boo-boos is if someone points them out to me. I'm not a doctor - you can tell me when I blow it, really. ;-) Jon.

Joan, July 7, 2001 - Hi everyone, This is my first post and I am so happy to have found this site. I had a bypass last year after having been diagnosed with CHF and cardiomyopathy. I have been an insulin dependent diabetic for 35 years. My question concerns the fact that I have been prescribed a calcium channel blocker (300mg) and 5mg Altace. I did have an arrhythmia leaving the hospital but haven't had any real scary episodes other than my heart hesitating and racing on 2 occasions. I don't read about anyone else on calcium channel blockers. I also am on digoxin and Lasix. Anyone having info on CCBs please talk to me. Thanks and God bless.

Heinz R, July 7, 2001 - Hi, I have just been diagnosed as having CHF. I have probably had it for awhile but my symptoms were attributed to worsening asthma and COPD. Very pronounced edema made my pulmonary doc refer me to a cardiologist who, after an ultrasound test, directed me to immediately go to an ER where she had the cath lab team waiting.
     It was decided to give me 2 days of diuretics first and then on July 5, I had my cath. All went well during the procedure. All my arteries are in good shape, with a 45% EF but my story gets serious because I was allergic to the contrast dye. About 5 minutes after I was in the recovery area and all hooked up to the monitors, I started shaking uncontrollably and began wheezing. Quick action by a team of about 7 doctors and nurses saved my life. I was given Demerol and Benadryl by IV and injection, as well as albuterol by nebulizer. This went on for about 20 minutes until I finally was able to relax the shaking and my breathing returned to normal. My thanks to Dr. Levite and his team at New York University Medical Center.
     I think it is important to point out to anyone taking any test involving contrast dye to be aware of the possibility of an allergic reaction. Any previous reaction to dyes in the past should be mentioned and be sure the staff will observe you carefully during and after the procedure. Good luck to all!

Pauline, July 7, 2001 - Hello everyone, I live in northern Delaware, south of Wilmington, and would appreciate any info on a good cardiologist who specializes in heart failure and takes his patients seriously. Pauline.

Tracey C, July 7, 2001 - Hi Everyone, I've received many e-mails from people trying to e-mail Bove's Pasta Sauce. I had the address wrong. It's actually Thank you so much. Have a great weekend, everyone.

Sammy L's July 9 reply to Heinz R's July 7, 2001 - Hi, I found your post regarding a reaction to contrast dye interesting. I am allergic to contrast dye too. I found this out years ago when I had a test called an IVP on my kidneys. While I was in the test I broke out in hives all over my body and my throat swelled shut. Later that day at home I experienced severe tachycardia. While in the ER a nurse told me I was lucky I didn't die. I have always told staff and other healthcare providers about my allergy. They told me also it was the iodine in the contrast that I was allergic to. Usually I get a snotty question like, "Well, how do you know?" While that can be intimidating, I just answer with my experience. The other piece of info I learned is that iodine can be in saltwater fish so I am careful when I eat lobster. My reaction to that was a short-term migraine but sometimes it didn't happen. My docs have always been very good about pretreating me with predinisone and Benadryl prior to each and every one of my angiograms and angioplasties.
     During one of my adenosine stress tests I had an allergic reaction to the adenosine, which caused a seizure. Thank goodness my own cardiologist was doing the test but it was very painful and scary. I was alert but unable to speak. He gave me a shot to reverse the effects right away. I have since had another adenosine test but didn't react.
     My understanding is that you can develope an allergy to anything at any point in your life so reminding us of the possible side effects is important. After all that we have gone through with our experiences sometimes we become complacent to those waivers we sign. I know I trusted my doc to use a Vasoseal while it was in the testing stage and I developed a very painful aneurysm. Some of the staff at ClubMed are so used to seeing me they have not taken me seriously when I request certain things, like making sure they put a Femstop on my puncture site. They chose to ignore me and of course I bled like crazy. Afterwards, when I gave them a chewing out, they've remembered and also I make sure they put a bladder cath in before I leave the cath lab so it is not so painful to urinate (it can be for me), simply because its easier and more effective for me. The cath lab bunch of course learned with me what works best.
     My suggestion is to keep a little diary of what is or has been effective or caused problems in the past, so we can be aware for our next run through. Peace and prayers, Sammy.

Dorothy's July 9 reply to Joan's July 7, 2001 - Hi Joan, I'm sorry to say I can tell you about calcium channel blockers. I was on verapamil for about 5 years to help control pain from really bad headaches. I was diagnosed with CHF the end of April. My CHF doc and my internist worked together to develop a new meds plan. The first thing the cardiologist did was tell me to quit taking verapamil. He also deleted some of my thyroid meds and lowered the dose of another. It seems that CHF meds and thyroid meds are not compatible. I hope this helps, Dorothy.

Pat Y, July 9, 2001 - Hi, Today I was cleaning out some paperwork and found a printout of Brenda C's June 8 reply to Suzy B's June 6, 2000. We always need a laugh. Reading Brenda C's reply gave me the same type of belly laugh I got the first time I read it. I recommend it highly to all.

Pauline, July 9, 2001 - Hi, Has anyone had a cardiac cath with the catheter entering the neck instead of the groin area? What are the risks and complications? I've heard that this type of cardiac cath (through the neck) is more dangerous than the other. Is this true? Is it more accurate in measuring heart pressures or right-sided heart function? I would be grateful for any info, Pauline.

Jon's July 9 reply to Pauline's July 9, 2001 - Hi Pauline, It's called a Swan-Ganz catheter and I've had one. They used to be routine for CHFers but not anymore. Now, they are only used when measuring pulmonary pressures to adjust meds - in very sick patients. The Swan-Ganz does provide more right-side info since that is so closely tied to pulmonary info. This procedure is more risky (and more expensive) than a groin or radial cath. However, it is the practice of leaving the Swan-Ganz catheter in during a hospital stay that is really dangerous. Jon.

Tracey C, July 10, 2001 - Hi everyone, I have a bottle of 6.25mg Coreg and a bottle of 0.25 Lanoxin that I am no longer taking. Seems a pity to let them go to waste, Tracey.

Jon, July 10, 2001 - Hi everyone, Some people noticed that parts of my site were on the blink yesterday. I ran out of server space but have now purchased more and re-uploaded some necessary changes so it should be back to normal.
     To everyone who sent me a message about David Ansley's offer, I forwarded each and every message to him.
     Finally, I rarely "advertise" for any product but I just upgraded my daughter's "college" computer with 256 MB more RAM. I mention this because Tigerdirect dot com has a sale for PC133 SDRAM for $40 for a 256 MB DIMM. It doesn't get better than this. Remember that 133mHz SDRAM will work in an older 100mHz system as well. These are standard 168-pin modules that work in most current computers, except Pentium 4's (which use a different type RAM altogether). Jon.

Amelia, July 10, 2001 - Hi everyone, I have been really wiped out the last 3 days. Taking a one hour trip like shopping or errands, and I am on the sofa the rest of the day. I was on 400mg amiodarone daily, 2,5mg Vasotec BID, but was raised to 5mg BID, Coumadin that is adjusted week to week, and 20mg Lasix daily. I have been in the hospital 3 times since April with a TIA, a-fib, and complications with an arteriogram.
     When do I call my doctor and which one do I call? CHF doc or internist? I am still under the care of my CHF doctor and see him every 2 weeks so I don't know if this could be due to meds or what. I would appreciate any help. Thanks, Amelia.

Donna, July 10, 2001 - Hi everyone, I have read this forum on and off for 3 or 4 years but have seldom posted. In 1997 I was diagnosed with cardiomyopathy, cause unknown. I had an EF of 13% and was hospitalized for 10 days in March of 1997. Afterwards I started to see a cardiologist and in May of 1997 Coreg became available. My doctor put me on Coreg, Vasotec, Lanoxin, Lasix and a blood thinner.
     Over the next 2 years my EF improved to 45% and then in 2000 it was normal according to my doctor. I had been very sick for the first year and a half but stared to feel somewhat better although I still had no energy and was very short of breath and could sleep for days if left alone.
     I really felt like this doctor had saved my life, and he was so caring and concerned at every visit until July of 2000. I went for my checkup and was embarassed by the receptionist right away. She said they knew I had no longer received SSI and how did I intend to pay? She wanted me to stand in front of the waiting room with everyone listening and call SSI and ask if they were going to pay for my visit. I refused. A few minutes later the nurse called me back to the exam room. She asked how I was going to pay. I said I would pay for the visit with cash. I had always had an echocardiogram before the doctor came in to see me. This time he came in right away.
     He asked me how I was going to pay. I told him the same as I had told the nurse. Then I complained about feeling so tired and the shortness of breath that never seemed to get better. He said according to my last echo my heart was normal in size and my EF was normal and there wasn't anything wrong with me except I was obese and he should take me off Coreg and other medicines. I said I know I have gained weight (35 pounds in 2 1/2 years) but I had no energy. I also said I was afraid to go off the medicine because I was afraid I would go into heart failure again. I said I had read some things on the computer about Coreg. He said he was in a better position to know what was being said about Coreg than I was. He said he would go ahead with the echo but he didn't see anything wrong with me except my obesity.
     I was very upset at being treated this way by him by then but went ahead with the echo. Afterwards he came back in and sheepishly said maybe I was right about wanting to stay on the medicine because there was still something on my echo that wasn't quite right. I was so upset with him I knew I was going to start crying and cursing any second so I opened the door and walked out. This man that was so concerned and caring when I had insurance. Now he was just a jerk after the money. I thank God I had the means to pay them when I first became sick or I would have been dead years ago. I still do not know what he saw on the echo that made him decide I still needed to be on the medicine. I haven't been back to a cardiologist in about a year now and I know I need to go.
     I will not go back to the one I had. He has been sending me notes saying it is time for me to come in for a visit. Why? I still do not have any insurance. Is he going to tell me again I'm just fat and have nothing wrong with my heart? My weight is 235. It was 200 when I first became sick. I really appreciate you all listening. I have been needing to tell this story for the last year. Even though I haven't been back, the doctor still renews my prescriptions when needed.
     I would like to know if anyone has been advised to stop taking their meds when they improved and how you felt when and if you did. I am still very short of breath and become very red in the face and start to sweat with very little exertion on my part, such as when I vacuum or sweep. I do not know what to think anymore. Any advice is appreciated. Thank you.

Michael, July 10, 2001 - Hi, I received the results to the liver biopsy I spoke of several days ago. It turns out the cause of my elevated liver function is swelling due to lack of oxygen from my inefficient heart. I am so happy I don't have some form of hepatitis or worse.

Sammy L's July 10 reply to Donna's July 10, 2001 - Hi Donna, My heart breaks for you about how you were treated. You did not say why you no longer receive your SSI. I am not sure where you live, but my suggestion is to contact any of your local social service agencies and ask for assistance. There may be some non-profit organizations that will be willing to help; Maybe even try the local hospital's social workers. Please don't be afraid to tell your story to anyone who will listen. Help often comes from the most unlikely places. Possibly there is an attorney who specializes in disability cases in your area who can help reinstate your SSI. Also, in reapplying through your local social service agency I found out (if you are a USA resident) they must provide you with a worker to help you fill out the mounds of paperwork they require.
     I suggest contacting your local and state representatives for assistance too. Politicians can be of help many times. We just need to ask. They have aides who can be assigned to help you. Don't worry about being politically correct or affiliated with any one political party; That is their job.
     The depression that often times is attached to heart disease is difficult enough to deal with, but then to be treated badly by our care providers exacerbates this. Do you have family who can battle for you? Your health is important to you and you have a right to whatever is in your chart from the doctor's office. Don't be afraid to ask for a copy. If you get an attorney for SSI they will get a copy of your medical records anyway. Also don't be afraid to just plain old ask other doctor's offices straight up if they will deny you care without insurance right now. I know you are tired, so choose where you want to spend some of the energy you do have. You are worth that energy. I hope this doesnt sound too preachy or pushy. My prayer is for you to have strength and guidance, Sammy.

Amelia's July 10 reply to Donna's July 10, 2001 - Hi Carly, Yes, I was told that nothing was wrong with my heart. I was diagnosed with heart failure in March of 1999 and was put on all the proper meds. I had a cath, which showed clear arteries. Then I changed doctors to someone closer and he said there was nothing wrong with my heart; my EF was high and it might be my lungs. My lung function tests had been normal, though. He told me I didn't need my meds and should go off them. Dumb, dumb me did what he said now I am back in heart failure with a-fib. I have had a TIA as well.
     I beg you: do not go off your meds. Run to another doctor, as far away from the nut you had been to as possisble. Any doctor who treats a patient like that should not be in practice. I get so angry when some just continue to go to doctors that do not have concern for their patients. I did go off my meds but after 3 months I knew something was drastically wrong and called another doctor and have been very, very happy with this CHF group. Wishing you well. Good luck.

Larry, July 10, 2001 - Hello, I have CHF but I can still get around real good if I don't climb hills. <g> I like to fish but I leave all my driving to Greyhound. Are there any other fishermen here? I like to travel and would like company on a fishing trip now and then. I can pitch in on food while visiting. If there are any takers, just drop me an e-mail. Thanks and God bless all of you, Larry.

Fred D, July 10, 2001 - Hi Jon, Thanks for this web site; it is really a blessing. I have a question regarding the amount of potassium I need to take each day. I am on a diuretic and was given a prescription for potassium. I questioned why I needed a prescription and was told something about not being able to buy over the counter potassium that met the needs precribed. I thought that it did not matter and after using the prescription strength, I started buying 99mg potassium off the shelf. The label states that it is potassium gluconate, stearic acid, and magnesium stearate. The supplement facts indicate that dosage of one tablet a day provides 3% of the daily value. I have no symptoms indicative of too little or too much potassium but since this is not a game, I would like your input. Should I go back to the prescription potassium or continue with what I am doing.

Jon's July 10 reply to Fred D's July 10, 2001 - Hi Fred, Thanks. :-) I would go back to taking the Rx potassium. It is slow release and the over the counter version is not, so there is actually a very big difference in how the potassium stays in your body over time. It can also make a big difference in the results of your routine blood testing for potassium level. Jon.

Jon, July 11, 2001 - Hi everyone, Centerwatch has "upgraded" their clinical trial notification system and it is worth checking out. It now includes FDA new drug approval notification and far more choices as to what you receive. It's an e-mail notification system and I think it is an excellent way to stay up to date on trials and drugs without exerting yourself. I encourage everyone to check it out.
     If, while you're there, you have the urge, please write their webmaster (none of the personal info is required), encouraging them to add my site ( ) to their WWW links. <g> I know their policy but I also believe they'll add it if they get enough messages since I am a domain.
     I'll be interviewing another new doc tomorrow afternoon so posts will be late. Jon.

Mary A's July 11 reply to Donna's July 10, 2001 - Hi Donna, What a lousy thing for a care provider to do! First you deal with discrimination based on lack of insurance, and then you have to deal with a fat-phobic jerk on top of it. I'm with everyone else: don't go off your meds.
     I would also see what kind of medical assistance is available in your state for low-income residents. Here in Wisconsin, besides Medicaid there is Badgercare and Gamp, which, although not perfect, at least allow you to have access to much-needed medical care. I recently had to find all new doctors when my previous clinic decided to stop taking Medicaid patients. It turned out to be one of the best things that ever happened to me.
     My previous cardiologist refused to take me off work, saying that I could still keep it up, even though I was going to the ER 2 to 3 times a week with a-fib. He never gave me a stress test and I hadn't had an echo in years. My primary care doctor was so insensitive that if I came in to see her with bronchitis she wouldn't even give me more than a day off, knowing that I'm a heart patient.
     Losing those 2 worthless doctors forced me to go doctor-shopping again and this time I really lucked out. My primary care doctor turned out to be a very kind-hearted man who referred me to an equally kind-hearted cardiologist, who immediately treated me with dignity and respect. She ordered a stress test and an echo. Three weeks after my first visit to her office, she took me 100% off work, filled out all the Social Security papers required and has been very much on my side.
     So you see, losing that awful doctor could turn out to be a very positive thing. I would also encourage you to not blame yourself too much over your weight. I know what it's like to not be able to exercise the way I want to. I even have my family blaming me for my illness, saying that if I lost weight I'd probably live forever. However, my cardiologist disagrees, saying the best route is low-impact exercise and eating healthy, and if I lose weight as a result, good. I often feel like wearing a button that says "I'm fat because I'm sick, not sick because I'm fat!" Don't lose heart, and don't let the negativity of one lousy doctor keep you from getting the care you need. I wish you the best of luck.

Ginger's July 11 reply to Donna's July 10, 2001 - Hi Donna, I am so sorry at the way you were treated. That doc is an idiot. I went from an EF of 30 to 56% for 2 years and was taken off all my meds except for a very small dose of an ACE inhibitor - not high enough to matter. Well, 6 months later I was tired and had an echo done and my EF had dropped from 56 to 40 to 45%. Although not very enlarged, myheart was bigger than at my previous echo.
     I am now trying to get back what I lost. Whatever you do, please do not let them take you off a decent dose of at least the ACE inhibitor. I know I never will again and my doc agrees that he jumped the gun and was wrong to drop it the way he did. I am now back on my original meds at the original dosages.
     Find a new doc now! There are doctors out there who will see you without insurance. I know if I didn't have insurance it would cost me $75 for an office visit at my cardio-doc's office. I hope this helps in some way. I am still tired but like everyone else here, I have good and bad days. When I think about it all, I am angry and want to blame the doc for what he did, but most of the time all I want is to live my life with some quality to it. Hopefully my experience will help others know what to not let happen.
     I wish you the best with finding a new doc and getting the care and compassion you deserve. You do need to go. I do not understand a doctor refilling scripts for a year without seeing you either. If I don't go every 3 months mine will not be refilled. They will call me and tell me no, you have to come in first. So you definitely need a new doc anyway you look at it. If you don't have any money, most states have a county hospital that has to take you. You could go that route and at least make sure you're okay. Hugs and prayers, Ginger.

Jon, July 11, 2001 - Hi everyone, It seems like difficulty exercising is a common frustration. I know it is with me, as is losing weight since getting heart failure. However, my wife and I have hit on a system that works both for her - who is extremely short on time, and for me - who has CHF.
     For exercise, the system is simple. Pick an exercise, any exercise. Only one! It can be walking the treadmill, doing a strength-building resistance exercise, anything. If you choose walking, use one-minute increments. Start with one minute. If you can do 5 minutes, still start with one minute! This is crucial to long-term success. If doing an exercise other than walking do one repetition. If you can do 5 repetitions, still do only one repetition!
     The rest is easy. Do your one minute of walking or one repetition of exercise for one month, each and every day, good days and bad days - every day!
     Add one - only one, no matter what! - repetition or minute every month. Do your one exercise every single day. By starting so slow, you don't get discouraged, you don't feel pressed for time, you don't get a fatigue hangover that tells you to quit exercising, you can exercise even on bad days, and the most important reason this works is that it teaches you deep down that you really can exercise.
     After 8 months, my wife (she's healthy so she started with one repetition of 2 different exercises every day) is doing a very respectable little strength-building routine and is very satisfied with the results, which encourages her to keep exercising - and that's the key to success, isn't it?
     I am up to 17 repetitions and am now (a long, long time after that tiny start) adding a second exercise - again at a tiny, tiny start. Don't mess with a winning formula! If this sounds too slow to work, consider your current level of exercise success and tell me what you have to lose. How many of you can do 17 pushups without paying a price? That was my one exercise at one repetition so long ago. I now do them every day (except when I lose an entire sleep period - severe insomnia is the pits). My hand strength is up, my arm strength is up and my shoulders don't hurt so badly every day. I can open jars again and I just feel more "normal."
     Like my Ask Dr. Silver page, one question a week seems so little, yet we now have over 25 questions that we can go back and look at answers for to help us understand our condition. The key is to start your exercise program with something that you won't stop within the first 6 months. After that, you're much more likely to stick with it.      About eating, my weight started going up quite rapidly 5 years after getting CHF - and I had never been fat in my life before. I went from 189 to 218. I hit on a sure-fire method but you have to really want to lose weight. I just put my portion on my plate 4 times a day as always, then I put half of it back. Period. That's it. Losing weight is actually an equation. You have to eat less calories than you burn to lose weight. Fat, nutrition, food groups, and all the other stuff in the world will not work if you take in more calories than you burn. It really is that simple. Not easy at all - but definitely simple. <g>
     Being on a necessarily slow-building exercise program makes it much tougher to lose weight but also makes the effort to do so even more important so you see benefits. Jon.

Thelma's July 11 reply to Donna's July 10, 2001 - Dear Donna, What terrible treatment to receive from health care providers! As a nurse who has done bedside care in the past, care was never based on ability to pay. We never said, "Show me the money" and always kept those issues out of our area. The billing department always got to handle those messy issues. To be asked repeatedly prior to care being provided is ridiculous.
     In regards to the overweight issue, I truly sympathize. For the past 6 months I have been going to a new CHF specialist. We have started a new drug regime with Coreg. I was having many side effects and have been feeling basically lousy, but the doc appears to brush off many of my symptoms and tells me, "It's not your heart or the medicine, it's just that you are out of shape and overweight." This is the most insulting comment to make to someone suffering from CHF. Yes, I agree I'm overweight and am trying to drop the pounds but I was before CHF and certainly didn't feel this bad. I have edema in my legs, and he tells me it's because I'm fat. To have all symptoms brushed off is aggravating and like you, I'm not sure how to handle this.
     Great news on how you've improved on Coreg. I'm staying hopeful that I will have positive results as well. Take care, Thelma.

Jerald D, July 11, 2001 - Hi, I've been treated 11 years by my internist for CHF. I've been on Coreg, Lanoxin, Monopril and Lasix. A few months ago my cardiologist put me on amiodarone (Cordarone) and my pulse rate has been 41 to 55, so my internist has taken me off Lanoxin and put me on pentoxifylline, which has been used to increase circulation in the legs and recently was found to be useful for CHF. Has anyone had experience with this drug? Thanks and God bless, Jerald Davis.

Donna's July 12 reply to Sammy L's July 10, 2001 - Hi Sammy, You asked why my SSI was stopped. When I first became sick I applied for Social Security Disability. Even though I had worked outside the home for 26 years I was told I was ineligible because I had not worked the 5 years previous to becoming sick so I did not have all my quarters in place. I was told to apply for SSI (Supplementary Security Income).
     My husband was a self-employed contractor with no health insurance at all. His business had a loss for that year so I was given the SSI and Medicaid. The next year he had a loss also, but in 1999 he had a profit. We had to report this on our tax return or risk being in trouble with the IRS so I lost SSI and Medicaid. The Medicaid had payed for the doctors, hospital stays and most of my medicine.
     At the end of 2000 I reapplied for SSI because my husband would have a loss again on his tax return but, guess what, since my last echo showed improvement and my EF was back up, the state has determined my condition is not severe enough to be considered disabling. That is why I have no insurance and no private company will cover me since I have had heart disease.
     We should never have put off buying health insurance and now we are suffering the result. I want to thank all of you who replied to my post. It has helped me so much already to talk about all this. I appreciate all the advice from you. Thank you.

Mark, July 12, 2001 - Hello everyone, This is my second post since being diagnosed a little over a month ago. It seems like I go through periods of extreme depression at times. I have been reading that Coreg can cause this. I only worry that if I go off Coreg, it may affect my general prognosis and my life expectancy. My family is probably fed up with the mood swings. Some days I feel great and ready to tackle anything, while other days it takes everything I have to get out of bed and face the day. Does anyone else go through this and does it last? Mark.

Jon, July 12, 2001 - Hi everyone, The following pages on my site have been updated:

  1. CHF Surgeries
  2. ACE Inhibitors
  3. More ACE Inhibitors
  4. CHF Info Text Files

PS. I forgot to say in my post about weight that I have come down from 218 to 202 so far. It has been very hard. Jon.

Karen, July 13, 2001 - Hi, We have only been online for a few weeks and just discovered your site. It is most interesting. I was born with congenital heart defects and had surgery as a little girl in 1958, a long time ago. I've had a very good life but about 10 years ago, developed various symptoms. I have a number of heart problems - valves, electrical, bradycardia. I am now on my second pacemaker. I take Cozaar, Lasix and an anticoagulant called sintrom.
     Years ago, my hair started falling out because of the Coumadin I was taking. My young, balding doc did nothing. I got mad, went to the library, and read until I found another anticoagulant named sintrom, generically known as nicoumalone. A lot of doctors and pharmacists do not know of this drug but I have it special-ordered for me and it works much like Coumadin, only my hair does not fall out anymore! I saw others with the hair falling out problem in The Archives and thought that others might benefit as I have. Keep up the good work!
Jon's note: Karen wrote back, saying that this drug may only be available in Canada

Mike W's July 13 reply to Mark's July 12, 2001 - Hi Mark, It's not clear whether you're talking about depression, exhaustion, or a combination of both. Personally, I went through a period of extreme depression after my diagnosis. I feel pretty certain that this is more the rule than the exception, in the case of anyone being diagnosed with any kind of chronic/life threatening illness. I was helped by antidepressants, counseling and time.
     Regarding Coreg, yes, it is documented that it can cause depression in some. However, it may not be necessary to go off it. With the help of your doctor you have to find out whether it is the culprit, or the stuff I mentioned first. Dosages and times of taking the drug can be modifed and there is another drug called Toprol XL with pretty much the same benefits that may not have the same effect (if is is drug-related at all).
     Adjusting to this disease is not easy and I believe that most people don't come to terms with it in weeks or even months. Actually, I believe it's an ongoing process as your condition changes. Peace, Mike Wafkowski.

Jim L's July 13 reply to Mark's July 12, 2001 - Hi Mark, I had a lot of trouble with Coreg, depression, and a-fib. My doc finally took me off of Coreg and substituted atenolol. I don't know what the difference is medically but I have lots of good results and no depression. I only got to the 3 1/8 mg dose and couldn't handle Coreg. Good luck.

Karen N, July 13, 2001 - Hi, I have been reading this site for 2 years since being diagnosed with cardiomyopathy. Thank you for all the helpful information. My EF was 30% in 1999 and is up now to 60%. I have had an excellent doctor who prescribed Lanoxin, Prinivil, Coreg and spironolactone (Aldactone). It has apparently been a good combination since he just told me not to come back for 2 years but to stay on the meds.
     I wanted to share something that I found very helpful called healing touch. I was lucky enough to find a practioner who was an RN with cardiac care history. Please try it if you are finding your energy low from the illness or the drugs. I really think it was a major factor in my recovery. Check out the Healing Touch International web page. I am so impressed with this that I am taking classes myself. Good luck to all of you and thanks for sharing so much over the years to help us all.

Stephanie's July 13 reply to Mark's July 12, 2001 - Hi Mark, I know exactly what you are talking about. I was diagnosed about 9 months ago and have had 9 months of ups and downs. It is not easy and at times can be scary. The meds probably do have a lot to do with it but I have to do the best I can with that. I won't go off Coreg. On bad days I try to see it as only one day - tomorrow will be better - if not, I can still make it through. The Lord gives us good days to help us through the tough ones.
     I also give myself permission to be depressed and don't expect much of myself on those days. I did go to a psychiatrist for the depression and she put me on some medication. She said that for some reason, heart disease and depression seem to go hand in hand. Best of luck, Mark, and everyone else having a tough day. We need to be here for each other. It is hard for family and friends to understand, Stephanie.

Sammy L's July 13 reply to Donna's July 12, 2001 - Hi Donna and all, I lack enough work quarters to get SSI too. I was 38 when I was diagnosed. I was working full-time and volunteering as well. I had only been back in the work force about 1 1/2 years and wasn't making money but I did have health insurance through the company I worked for. I tried to return to work but kept having angioplasties and heart attacks. My boss kept telling me to stay home and get healthy, and when I could return, my job would be there. I kept in touch with him weekly. Once I had taken a ride to the ER via private car after they had left me alone at lunch time. I had to call my boss and have him come back to cover the desk so he was tense about my health.
     I made the mistake of applying for SSI on my own. I was denied. Although we had insurance through my significant other's job and through my job, we were still facing about $20,000 US in co-pays. After a second denial, I got an attorney, recommended by a co-worker. I talked to my boss about going back to work part-time but he had hired someone full-time for my position. My boss agreed to carry my health insurance until the end of what would have been my one-year anniversary with them. My meds were running about $200 US a month. I talked to my family about them killing me to remove the burden I caused. I was wishing I had died from the stupid TIA that started it all. I was very depressed.
     My PCP made me contract with her not to kill myself. The SSI attorney advised me I had needed to earn another $780 to have enough work quarters. The main problem was that I was still married and my husband earned too much (28,000 per year). We tried everything. My drug dealing neighbors were drawing SSI for fake problems and my sister in law got it for being scared to be in crowds although she had never worked at all. I was so angry! I asked my lawyer what would happen if we split up and I moved out. He said I would qualify for SSI. He said I would then get the health insurance that comes with it and food stamps. We didn't need to actually divorce but to live seperately. I moved out and supplied my lawyer with my new address. Although I was denied again for SSI, I received SSDI. It took about 30 days to get monthly income. My case was appealed and denied and is in appeal again but I still receive the SSDI.
     My honey and I did make an application to divorce but couldn't finalize it; emotionally it was too devastating. I thank God everyday for the support of family and friends who helped us with everything to giving me a place to move to, to cash gifts, to letters to our state representatives. The clincher for receiving SSDI medically was going to see a therapist for depression. I have had to sign over anything I was co-owner on like vehicles. I owe about $60,000 US now in medical bills.
     If I get SSI, they say they will pay my outstanding medical bills. I tell my creditors I am applying for SSI. I hope everyone knows that just contacting a creditor, whether it's the mortgage or utility company, about what is happening helps trememdously. You may have to go through a licensed credit counselor to receive discounts. After 2 years my cardiologist's office got a little nasty about the outstanding debt. They have now offered me an application for discounting the bill.
     I guess I shared this because I am sure others are going through similar experiences. Emotionally I think we have gotten to the point where we just don't talk about it because there isn't anything we can do. I pray we don't lose our house, even though it's not much and is in a risky part of town. I hate that my honey is facing financial ruin because of my health, even though this man that God sent me has told me he would rather have me than any "thing."
     Depression is something that overtakes me sometimes by minutes and sometimes by days. I haver a lot of anger. I walk to try to release it. I pray. I am more scared that I will die from depression than any other health problem. I still wish I had died with that first heart attack or TIA. I looked up how much of my meds I had to take to die but only to make me feel like I still have some sort of control. I wouldn't do that to my kids.
     I use this site to help me not be depressed and to handle different issues. I have rattled on and now am in tears again. Crying often helps. I hope someone can glean some help from this. Sometimes I think that if just one person's trip is made a little easier because of my pain, it will be worth it. Peace and prayers, Sammy.

Joe S, July 13, 2001 - Happy Friday the thirteenth, This question is for anyone. Yesterday I went shopping with my wife at two nurseries. The more I walked in the sun, the weaker I got. I went back to the car and the water there was hot. I felt rotten until I bought a big bottle of water and drank almost the whole thing. What was happening? Joe S.

Sharon P's July 13 reply to Mark's July 12, 2001 - Hi, Hang in there with the Coreg. I finally started to feel better 6 months after I began the drug, which is exactly what was said in the informational video I received from my cardiologist. I was depressed too, but attribute it as much to dealing with my diagnosis as the Coreg. With time, things do get better. Blessings, Sharon P.

Sheryl's July 13 reply to Mark's July 12, 2001 - Hi, I am glad to see Mark mention the depression with which many of us suffer. We may be grieving for the death of our old selves and the life we used to live. Just like in grieving for the death of a loved one, we go though the stages of grief, then go back and forth in these stages. Part of it may be the meds, Mark, but since you just got diagnosed I think your depression is a pretty normal response to your situation. I know that on the bad days when I am sicker, I get depressed. I also know that things will look better when I feel better. Some days I get just plain mad, too.
     This is where family and friends come in. You should discuss your feelings with a friend, family member, or someone you trust. You need all the emotional support you can get. Keeping a good positive outlook will do wonders to help you as much as your meds to improve over time. Laughter is great medicine too, so make sure you do lots of that.
     One day at the transplant clinic there was a little boy of about 3 waiting in the next room. As I listened to him crying while they flushed his catheter I was embarrassed that I ever felt sorry for myself. I have had 50 years without problems. He was barely up and running. Make a list of your blessings when you are feeling down. If your depression gets overwhelming, talk about it with your doctor. If you don't have anyone to hug, get a dog! Oh okay, for you cat lovers, get a cat!

Randy S' July 13 reply to Karen N's July 13, 2001 - Hi Karen and all, Spironolactone is widely available in the United States. It is an old potassium-sparing diuretic and seems to work well in combination with ACE inhibitors and beta-blockers. However, if you are at high risk for elevated potassium levl it may not be an option or else it would be closely monitored. I am taking it as well as Toprol XL and Zestril.
     I was diagnosed with nonischemic dilated cardiomyopathy in September, 2000. My EF is 25% to 28%. I have noticed an increase in my symptoms over the past few months but am trusting God for my daily living! My mother passed away with this in 1990 but hers had progressed somewhat prior to diagnosis. My cardiologist believes that mine is totally unrelated to hers since no one else in the family has tested positive for it. However, my wife and I are not totally convinced that it is not familial; But God is in control. Thanks Jon, for your site, Randy S.

Bill B, July 14, 2001 - Hi everyone, I have a 17 year old daughter who knows I'm sick. She is very sensitive. When she saw me on the machines after my bypass, she threw up and cried for hours. I am afraid to tell her the seriousness of my condition but I am afraid if I don't tell her about it and something happens to me she will be hurt even more. Any advice will be appreciated. It is hot in Texas, by the way. God bless, Bill B.

Mark, July 14, 2001 - Hello again everyone, Thank you for the e-mails and the posts on the site regarding the depression I am experiencing. I think the best thing about this site is the fact that we all have something in common here and the support everyone gives to one another is great. I am feeling better today and will hang in there. I appreciate everyone's support, Mark.

Alexis, July 14, 2001 - Hi, I was diagnosed with CHF in April. At that time I went to the ER with extreme breathing problems and swollen ankles. My blood pressure was 190/120 and my heart rate at rest was 130. They did a chest x-ray and an echo, and told me I had CHF. They also told me my heart was enlarged and that I had a leaky valve. I stayed in the hospital for 5 days while they gave me diuretics by IV and got all the fluid out of my lungs. They told me my EF was 25% and sent me home with prescriptions for Coreg, Lasix, Zestril, Lipitor, and Diovan. They wanted to do a cath but I was having a lot of trouble with the HMO switching my doctors on me and giving me all kinds of trouble.
     I've worked very hard at staying on a low sodium diet and an exercise program. Through my employer I was able to switch my insurance to a standard health plan. I found a new doc that I really like and we finally got to do the cath procedure yesterday. The cath showed that my heart was not enlarged but that some of the heart muscle was hardened. There are no leaking valves and my EF is at least 70%. My new doc said he was going to go back and look at the echo from April to see if he could figure out why the drastic changes in only 3 months. He also said he thinks the problems I had in April were the result of the high blood pressure and that as long as I control my blood pressure going forward I should be in great shape!
     Although I'm very happy with the new test results, after all I've learned about CHF from this site and lots of additional research it sounds almost too good to be true. Has anyone else ever heard of improvements like this before? I'm going to see my doc on Monday morning to go over the test results in more detail but I would appreciate hearing from anyone here that might want to comment. Thanks for all your support.

Jon's July 14 reply to Alexis' July 14, 2001 - Hi, There are several possibilities. Of course, your first round of tests may have been inaccurate for some reason. As I understand it, and this is one area I have not researched well at all, some poeple with acute inflammation of the heart make full recoveries in a brief time. However, these patients are usually critically ill, requiring extensive CCU support while in the hospital. Finally, it may be that you just made a full recovery. It doesn't happen very often, but it does happen, and I certainly hope that is the case with you! :-) Jon.

Michael, July 14, 2001 - Hi, I recently had a liver biopsy and was taken off Coumadin for a week prior and 2 weeks following the procedure. I noticed that since I've started taking the drug again I feel queasy sometimes and I don't sleep as well as I did when I was not on the drug. I don't recall going through any adjustment period when I was first placed on Coumadin but I was in the hospital and dealing with other things at that time. Do any of you recall dealing with similar side effects?

Trisha's July 14 reply to Joe S' July 13, 2001 - Hi, I don't know what the difference is about being in the sun. I took my kids to an outdoor Christian concert and nearly passed out. If I could have walked to the first aid station, I would have. That was 2 weeks ago and I still haven't felt back to normal. The concert was great though. It was wonderful family time! Trish.

Sherrell G's July 14 reply to Bill B's July 14, 2001 - Hi, My children were 15, 13, and 10 years old when I was diagnosed with DCM at age 38. From the get-go, my husband and I felt that since my illness was going to affect the whole family, they needed to know what was happening. So we explained in detail to them the disease, the symptoms, and the treatment plan.
     Without their cooperation and understanding, we might not have made it so well through their teenage years. Now at age 22, 20, and 17, they are still "watchful over mom" and make my life so much easier. They are truly wonderful children. However, each person/family must decide what is best for his/their situation. I think fear of the unknown is worse than telling them the whole truth, especially in teenagers. Good luck with your decision.

Ginger's July 14 reply to Alexis' July 14, 2001 - Hi Alexis, I went from an EF of 30% in February to an EF of 56%, which is considered normal in April. It's a long complicated story but my EF is now 40 to 45% but it's thought to be due to a drop in meds. We will see if the improvement is back on my next echo. So yes, it can happen. Good luck. I thought an EF only went to 65! Hugs and prayers, Ginger.
Jon's note: Theoretically, an EF could go to 90% or maybe even a little more

Yvette's July 14 reply to Bill B's July 14, 2001 - Hi, You said your daughter was 17 years old. Tell her. My dad recently died of lung cancer but none of us (3 daughters and a son) knew how serious it was and took it for granted that he was getting better. He didn't. Don't let her think everything is fine when it is not. Don't treat her as if she is fragile but please don't blame God, meaning don't give her cause to be bitter. If you treat her as a self-centered 10 year old child instead of the young adult she is, she will be bitter. Help her to not feel she is to blame, if that's the case. Also though, don't spend your time worring about dying. Don't give up on yourself and she won't have cause to feel a victim.

Kathleen T, July 14, 2001 - Hello all, This is my second post. I want to thank you for the replies to my previous post and I want to thank you Jon, for this incredibly well put together web site. Anyway, two things I want to ask. I have idiopathic cardiomyopathy. I have not been diagnosed with CHF. At last echo, my EF was 35%. My medications include digoxin, 6.25mg Coreg BID, an aspirin, multi-vitamin and CoQ10.
     I've just started CoQ10 and am wondering what a good dose is to aim for. I am now taking 50mg twice a day. Is this a good dose to start with? I was told to eventually get to 400 to 500mg a day (not by my doctor but by an aquaintance). Could someone help with this?
     Also, is it normal for my legs and feet to ache, ache, ache by the end of the day? They are not swollen, but they just ache! Any help would be greatly appreciated. I hope you are all feeling well today. By the way, it's good to know that I'm not the only one a little depressed on Coreg. It gave my husband a sigh of relief to realize this also. Thanks.

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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