The paperwork never ends The Archives
November 1-15, 2002 Archive Index CHFpatients.com

Cat 11-1     SSD info url
 
Joe S' 11-1 reply to Craig B's 10-31     work possibility, ibuprofen question
 
Amelia's 11-2 reply to Joe S' 11-1     NSAIDs
 
Jon's 11-2 reply to Joe S' 11-1     NSAIDs and heart failure
 
Joseph P's 11-2 reply to Joe S' 11-1     NSAIDs and heart failure
 
Charlie's 11-2 reply to Cat's 10-25     my experience
 
Sandy 11-2     CoQ10 opinion and experience
 
Catherine L 11-4     EF questions and more
 
Joe S' 11-4 reply to Joseph P's 11-2     aspirin, NSAIDS and pain & more
 
Ingrid 11-4     tingling in hands - anyone else?
 
Clara D's 11-4 reply to Jon's 11-2     aspirin, NSAIDs and clots
 
Jon's 11-4 reply to Clara D's 11-4     aspirin, NSAIDs and clots
 
Vicki 11-4     weird blood pressure goings-on, anyone else?
 
Don Hudson 11-4     computer crashes here
 
Jon's 11-4 reply to Don Hudson's 11-4     has anyone else had this?
 
Cat 11-4     benefits info resource
 
Sheryl 11-4     seek low-sodium traveling tips
 
Kathy H 11-4     seek CHF (CRT) pacemaker experiences
 
Rosemarie H 11-4     seek others in the same boat
 
Craig B's 11-4 reply to Don H's 11-4     pooter problems
 
Mel G's 11-4 reply to Catherine L's 11-4     EF, tests, exercise & more
 
Tom S' 11-5 reply to Don H's 11-4     computer woes
 
Jon 11-5     recipes request
 
Michael 11-5     CoQ10, aspirin, memory loss & more - questions
 
Jon's 11-5 reply to Michael's 11-5     aspirin, Tylenol & mental fuzziness
 
Jon's 11-5 reply to Ingrid's 11-4     hand tingling and numbness
 
Jon's 11-5 reply to Rosemarie's 11-4     are his electrolytes tested regularly?
 
Sheryl C's 11-5 reply to Jon's 11-5     low-carbohydrate food
 
Karen R 11-5     what about gastric bypass surgery?
 
Kathleen T 11-5     my foot and leg pain/Coreg experience
 
Myrtle's 11-6 reply to Sheryl C's 11-5     spaghetti squash & more
 
Jon 11-6     comments on recent trials
 
Jon 11-6     I need you!
 
Ben B's 11-6 reply to Jon's 11-6     doctors and medical studies
 
Ben B's 11-6 reply to Jon's 11-6     different ideas of my chances
 
Jon 11-6     I need you! more
 
Catherine L 11-6     test accuracy questions & more
 
Jon's 11-6 reply to Catherine L's 11-6     test accuracy
 
Stacey 11-6     medical studies, longevity question & more
 
Dorothy P's 11-6 reply to Ben B's 11-6     UNUM Disability possibility
 
Vee's 11-6 reply to Jon's 11-6     surveys & more
 
Jon's 11-6 reply to Vee's 11-6     more about suggesting topics
 
Tom S' 11-7 reply to Jon's 11-6     doctors, trials, results good and bad
 
Jon's 11-7 reply to Tom S' 11-7     what do we do about it?
 
Scott Brown's 11-7 reply to Ben B's 11-6     mortality in CHFers
 
Jon's 11-7 reply to Scott Brown's 11-7     mortality in CHFers
 
Scott Brown's 11-7 reply to Kathleen's 11-5     Coreg & foot pain and more
 
Myrtle C 11-7     with stubborn veins, what to do for IV?
 
Gino's 11-7 reply to Jon's 11-7     doctors, patients, trials, numbers & more
 
Jon's 11-7 reply to Gino's 11-7     doctors, patients, trials, numbers & more
 
Hal 11-8     seek employment experiences and more
 
Sheryl C's 11-8 reply to Myrtle C's 11-7     hard veins to stick
 
Joe S' 11-8 reply to Tom S' 11-7     I agree with you
 
Gino's 11-8 reply to Jon's 11-7     studies, doctors and more
 
Jon's 11-8 reply to Gino's 11-8     studies, doctors and more
 
Nick Kanterakis 11-9     intro
 
Vee's 11-9 reply to Jon's 11-7     surveys, gathering information & more
 
Jerald Pelzer's 11-9 reply to Vicki's 11-4     blood pressure weirdness
 
Jon's 11-9 reply to Vee's 11-9     surveys, motivations, goals
 
John S' 11-9 reply to Gino's 11-7     CHF docs, keeping up as a doctor
 
Jon's 11-9 reply to John S' 11-97     CHF docs, keeping up as a doctor
 
Ann's 11-9 reply to Vicki's 11-4     blood pressure playing nasty tricks
 
Catherine L's 11-9 reply to Jon's 11-6     heart tests, exercise
 
Jon's 11-9 reply to Catherine L's 11-9     heart tests, exercise
 
Michael S 11-9     questions - ICDs, palpitations & more
 
Susan B 11-9     heart rhythm, cardioversion questions
 
Vic's 11-11 reply to Jerald's 11-9     what exactly is that?
 
Staci H 11-11     Atkin's Diet question
 
Jon's 11-11 reply to Staci H's 11-11     Atkin's Diet thoughts
 
Catherine L 11-11     CPX test questions
 
Jon's 11-11 reply to Catherine L's 11-11     CPX test
 
Katherine H's 11-11 reply to Michael S' 11-9     pacer forums and information
 
Gino's 11-11 reply to Michael S' 11-9     ICD information
 
Chuck 11-11     viruses - should I avoid crowds?
 
Amelia's 11-11 reply to Jon's 11-9     CHF specialist is the way to go
 
Gino's 11-11 reply to John S' 11-9     keeping up with advances and more
 
Jon's 11-11 reply to Gino's 11-11     more posts later
 
Gino's 11-12 reply to Ann's 11-11     low blood pressure
 
Mel G's 11-11 reply to Michael S' 11-9     ICD experiences
 
Mel G's 11-11 reply to Catherine L's 11-9     nuclear testing
 
Jim C 11-12     test and EF questions & more
 
Dee 11-12     what is CRT?
 
Jon's 11-12 reply to Dee's 11-12     CRT
 
Jim L's 11-12 reply to Staci H's 11-11     Atkin's Diet experience
 
Eve 11-12     seek cardizem experiences and info
 
Jon's 11-12 reply to Eve's 11-12     calcium channel blockers
 
Joe S' 11-12 reply to Chuck's 11-11     avoiding viruses
 
Tom 11-12     EECP study underway
 
Jack D's 11-12 reply to Jon's 11-11     Atkins' diet experience
 
Jon's 11-12 reply to Jack D's 11-12     Atkins' diet experience
 
Mel G's 11-12 reply to Jon's 11-11     low-carb diet experience
 
Jon's 11-12 reply to Mel G's 11-12     hospital food
 
Karen K's 11-12 reply to Gino's 11-11     need help finding those guidelines
 
Clara D's 11-12 reply to Jim C's 11-12     similar experience so far
 
Shelby H's 11-12 reply to Joe S' 11-12     colloidal silver side effect
 
Donna's 11-12 reply to Jon's 11-12     Atkins diet experience
 
Loretta D 11-3     Atkins experience
 
Ruthie A's 11-13 reply to Jack D's 11-12     Atkins experience
 
Jon's 11-13 reply to Ruthie A's 11-13     Atkins system & their online presence
 
Peggy 11-13     scared for my husband after surgery
 
Jon's 11-13 reply to Peggy's 11-13     CHF after surgery
 
Amy 11-13     Lou Jones died
 
Mike 11-13     got my SSD and more
 
Joe S' 11-13 reply to Jack D's 11-12     bad Atkins' diet experience
 
Jon's 11-13 reply to Joe S' 11-13     that was bad advice, alright
 
Chelle C 11-13     I am scared and seek advice
 
Jon's 11-13 reply to Chelle C's 11-13     I'd see the right doctor now
 
Joyce 11-13     angina question
 
Jon's 11-13 reply to Joyce's 11-13     angina and heart failure
 
Jody H 11-13     do I need a flu shot?
 
Craig B 11-13     page about low-carb diets
 
Jon's 11-13 reply to Craig B's 11-13     incorrect information steams me
 
Patty 11-13     I really like this site
 
Shelby H's 11-13 reply to Chelle C's 11-13     some advice & more
 
Mike 11-13     men's fertility and CHF meds question
 
Natalie K's 11-14 reply to Amy's 11-13     condolences & more
 
Amelia's 11-14 reply to Jon's 11-12     the Suzanne Somers' eating plan
 
Jon's 11-14 repy to Amelia's 11-14     can you find low-sodium sausage?
 
Myrtle C's 11-14 reply to Chelle C's 11-13     hang in there & more
 
Myrtle C's 11-14 reply to Joyce's 11-13     chest pain experience & more
 
Myrtle C's 11-14 reply to Jody H's 11-13     get a flu shot
 
Myrtle C 11-14     pneumonia vaccine shot
 
Tom S' 11-14 reply to Jon's 11-13     angina
 
Joe S 11-14     seek ideas
 
Jack D's 11-14 reply to Mike's 11-13     heart meds and getting pregnant
 
Tom S' 11-14 reply to Jon's 11-14     too much information
 
Jody H's 11-14 reply to Myrtle C's 11-14     EF measurement questions
 
Steve Bauer 11-14     docs and details questions
 
Richard M 11-14     my dieting experience
 
Natalie K's 11-14 reply to Jon's 11-14     seeking low sodium bacon
 
Myrtle C's 11-14 reply to Jack Ds 11-14     numbers
 


Cat, November 1, 2002 - Hi, The following may provide some info. For additional information, there is also a toll-free number you can call. www.ssa.gov/pubs/10095.html. I recently received my "free ticket" to return to work if I wanted to. I wonder what the selection process is for distributing these tickets. lafsalot2000@yahoo.com


Joe S' November 1 reply to Craig B's October 31, 2002 - Hi Craig, I started an online small business years ago which keeps me busy when I want to be busy. It also adds a few bucks to the till. One question of anyone: Is it it bad to take ibupofren or other pain killers? Joe S. jes@gbis.com


Amelia's November 2 reply to Joe S' November 1, 2002 - Hi Joe, I have taken pain killers off and on like Advil for several years per doctor's approval. I take no Advil now as I am on Coumadin. As long as you do not take a blood thinner like Coumadin it should be alright, but as Jon always tells us, "check with your doctor." The doctor giving you the scrip should be aware of all meds you are taking, so he will not give you something that might react with your heart meds. You can also doublecheck with your pharmacist. It's one thing to have to deal with CHF but having other medical problems is a bummer. I am doing everything I can to keep going and take as little narcotic as possible for my spinal stenosis and compressed nerve. Good luck and best to all. amelias@erols.com


Jon's November 2 reply to Joe S' November 1, 2002 - Hi Joe, Click the link I put in your post. It's not a good idea to take any kind of NSAID if at all possible not to take them. They can trigger CHF episodes and certainly make us retain fluid. Besides Heartbytes, see the CHF page (let it load). Jon.


Joseph P's November 2 reply to Joe S' November 1, 2002 - Hi Joe, I go to the CHF center in St. Louis and the nurses there told me never to take ibuprofen. They did not go into detail but everything they have told me turns out to be true. joeandol@shawneelink.net


Charlie's November 2 reply to Cat's October 25, 2002 - Hi, I had this happen quite often before I got my ICD and got my sodium under control. It would seem on about evening I would experience a lot of bloating, which continued for hours into the night. My cardiologist told me that it was my liver giving me the bloating, since it was shoving the organs forward to make more room for itself - all CHF-related of course. Since the implant and diuretics, zero problems. cekestner@bigfoot.com


Sandy, November 2, 2002 - Hi, My husband has blocked coronary arteries, CABG, CHF, and DCM. He received 300 mg of CoEnzyme Q10 while in the hospital after his CABG and now takes 200mg every day in a once a day dose. Yes, it is expensive, but his cardiac surgeon thinks it helps. He has told us, "As long as you can afford it, take it!" The cardiologist just chuckles that we continue to insist upon it. sandy4014@aol.com


Catherine L, November 4, 2002 - Hi, Sometimes my heart (or at least that area) hurts. Can anyone explain why? I have idiopathic CM. I was just diagnosed 5 weeks ago. I'm happy to say I am not crying everyday like I was.
     Also, initially they said my EF was 30 to 35% from the echo. Now they say it is in the 40s from the thallium stress test. Was the first test wrong or is it possible I've improved so fast? For the first 3 weeks after my diagnosis I was practically bedridden. Since then I've been exercising daily and last week I walked 27 miles. Could the exercise account for my higher EF? Does anyone have any ideas?
     I can't say how much everyone on this site means to me. You are all so nice. You are such examples of courage, guts and faith. I have learned so much from so many of you. You are helping me to persevere and maybe even prevail. For that, I thank you all. ccash@kcnet.com


Joe S' November 4 reply to Joseph P's November 2, 2002 - Hi, Confusion, confusion! Nah, it's back to my memory. I can't remember what's good and bad. I have been getting a horrible backache right down the middle. Aspirin doesn't help much and when I take too much I bleed without being cut. Other pain relievers have side effects that can be worse. The curse of having thin blood, nah, that definitely is not a curse. Hey, a customer of mine was taken off Coumadin after 2 years. I thought it was for life. It's been 8 months since my valve job and I'm doing great besides the memory problems. Joe S. jes@gbis.com


Ingrid, November 4, 2002 - Hi, I had a heart attack in 1999 and was consequently diagnosed with CHF and an EF of around 25%. I take all the usual meds and have all the usual symptoms. I have noticed recently that I have tingling, or pins and needles, in the outer edges of both hands, including my little fingers. It is quite persistent. Does anyone else have this? Is it another progression of the disease? ingrid.godfrey@ntlworld.com


Clara D's November 4 reply to Jon's November 2, 2002 - Hi Jon, Would you include aspirin in the NSAIDs considered harmful to CHFers? I've been taking it but my new cardiologist who is a HF specialist told me I didn't need it. I don't have coronary artery disease so don't have to worry about clots from that source. However, I do have dilated cardiomyopathy so blood must be pooling in the heart and where blood pools there is a good chance of clots. I want to protect myself from a stroke but I don't want to increase my chances of a CHF episode. Seems like this is a no win situation. ncdossetts@aol.com


Jon's November 4 reply to Clara D's November 4, 2002 - Hi Clara, Yes, aspirin is an NSAID, although it is usually classed by itself due to its added actions beyond those of other NSAIDs.
     Blood is left in the heart after each beat with DCM but please remember that this is normal in healthy hearts too! You see, a healthy EF is roughly 55% to 70%, right? Well, that means up to 45% of the blood per beat is not going anywhere in a "normal" heart either. <g> It is only when the same blood is pooling for many, many beats in a row that you risk clots. A-fib is the usual culprit in this - not CHF.
     The first thing my CHF specialist did when I switched to his care was take me off aspirin (then cholesterol-lowering drugs). He said that if you don't have any risk factors for stroke, why take a drug for it - and aspirin is a drug. It has side effects both short-term and long-term, so you shouldn't take it unless you need it. I think your CHF doc just didn't take enough time to explain his position. ;-) Jon.


Vicki, November 4, 2002 - Hi, I haven't posted here before, but I have a question to ask. When I was in the hospital my blood pressure went up when I lay down and went down when I stood up. Does anyone know why this happens or had the same experience? I have DCM, gastric reflux, and an ICD. art_vic_payne@yahoo.com.au


Don Hudson, November 4, 2002 - Hi, After not being able to see all of your site with webtv, I bought a PC (computer). Now when I try to go into any other pages on your site, it knocks me off the Internet or says its an illegal operation and they will knock me off. I use Internet Explorer. What should I do? jdhudson@bignetnorth.net


Jon's November 4 reply to Don Hudson's November 4, 2002 - Hi Don, I don't know. An "illegal operations" error is usually a Windows or application error, but I don't know what causes it in this case. Have you asked the technical support line for your new system?
     I have stayed with IE 5.5 due to Microsoft requiring a new operating system to use IE 6. I assume you are using IE 6, so I don't know know how your browser would behave. If anyone else has ever had a similar problem, please post about it. Thanks, Jon.


Cat, November 4, 2002 - Hi, The following is an url that let's a person check out all state and federal benefits applicable to his specific location and age, etc: https://ssl1.benefitscheckup.org/. lafsalot2000@yahoo.com


Sheryl, November 4, 2002 - Hi, I am getting ready for a trip and to stay in a hotel. The room has a frig. Does anyone have any new ideas for low salt foods while traveling? I know all the general food traps to avoid, but some ideas will be appreciated. Thanks, Sheryl. cvprehab@hotmail.com


Kathy H, November 4, 2002 - Hi, I'd like to talk to anyone who has gotten a biventricular (CRT) pacemaker: your experiences, icluding the good, the bad, and the ugly. I have CHF, DCM, and some weird but noninducible arrhythmias. I think they are a big part of my exhaustion. From everything I read, I can't see the downside to a CRT pacemaker. My cardio-doc says he wants everyone in agreement and says he can't guarantee I will feel better. My reaction to that is, "Well, duh! there are no guarantees." My question is, could it make me feel worse? Thanks for all your help.
     Also, Ginger, I have tried to e-mail you several times but it bounces back. I have a question about chat. kathyh@linkny.com


Rosemarie, November 4, 2002 - Hi, My husband Frank, who is 64 years old, was diagnosed with cardiomyopathy 2 1/2 years ago after 2 bouts in the hospital with heart failure. He was diagnosed with atrial fibrillation some years before that and had had an ablation procedure, which was reasonably successful. His medication keeps him reasonably well, but he can do very little. He has had 2 pulmonary embolisms so would never be considered for surgery.
     He struggles a lot with his feet being sometimes numb and sometimes burning and quite painful. He quite often suffers from cramps. He is currently struggling to shake off shingles, which he contracted in July of this year. I find it hard to know what to expect and also to help him pace himself when he wants to do things and then overdoes it and suffers for several days after that.
     He coughs quite a lot, which can also be exhuasting. He is very accepting of his condition and not afraid of dying. I would love to hear from others who have similar conditions or are caring for someone who does. Please e-mail me. I am writing from South Africa. Rosemarie. bullockf@iafrica.com


Craig B's November 4 reply to Don H's November 4, 2002 - Hi Don, It's definitely a problem with either your Internet provider or the settings in Internet Explorer. Those error messages are 100% Windows software-based problems. Check for security settings in Internet Explorer through Tools/Internet Options). Just make sure they are set on default or medium. Sometimes the privacy or security settings are set too high and a page won't open. Regards, Craig B. bayce@optusnet.com.au


Mel G's November 4 reply to Catherine L's November 4, 2002 - Hi Catherine, It's good to hear that you're adjusting and getting on with things. As to why your heart hurts, you need to check with your doctor about to whether that's angina or not. He will be able to help you determine that. Make sure you note what you're doing when it happens, what the pain feels like (sharp, dull, radiating, etc.), how long it lasts, and what gives you relief from the pain.
     The difference in your EF could be due to a couple of reasons. First of all, the echo is a little more subjective (the way it's read by a technician or doctor) than the nuclear medicine test, and as a result isn't quite as precisely accurate. However, it is possible that your ejection fraction has improved that much if you've gone from undiagnosed to being on the full regime of cardiac meds. That's very cool if your EF is in the 40s now. :-)
     Just because your EF is better doesn't mean that you will feel well straight away. Give yourself lots of time to heal and to slowly get back to a little more activity, only as you feel able to do it. The exercise is not responsible for the increased EF; most likely it's the meds doing their job. Ejection fraction is a lot like the inverse of measuring the size of your heart, and is a direct reflection of the reverse remodeling doctors are looking for. The exercise is really important to keep your whole body well, and walking is just great for you. It sounds like you're doing all the right things. Keep it up. falmouth@bigpond.com


Tom S' November 5 reply to Don H's November 4, 2002 - Hi, The "illegal operation" message when operating in Windows can generally be attributed to insufficient memory to complete or continue with an operation. There are computers, then there are computers. If you are trying to work with a computer that has less than a Pentium II chip in it and at least 62 megs of RAM, you might run into problems. It's hard to diagnose any Windows problem without knowing the basic hardware configurations. If the problem is not caused by that, it can be a myriad of other gremlins that take time to track down, sort out, and eliminate when necessary. bigheart@muchomail.com


Jon, November 5, 2002 - Hi everyone, if anyone has been on the Atkins' diet and has some recipes that work with the "Induction Phase" - the first, strictest phase, please e-mail them to me, whether they are low-sodium or not. I am considering converting some Atkins' stuff into low-sodium and maybe adding it to my recipes section (if I can manage it). Thanks, Jon.


Michael, November 5, 2002 - Hi all, It has been awhile since I have been here, but seems like CoQ10 is still a big question and the answers vary with the CHF specialist. My doc said it would not hurt me and also that it would not help me, but if I felt like wasting my money then take it. So who knows? I feel really good without it and am fortunate in that respect.
     Someone did mention memory problems. I have had them since my CHF better than a year ago, and recently have to butt into coversations with others I am talking to (politely) or I lose my train of thought altogether. Several specialists have told me that it is because of less oxygen to my brain. Anyone with any feedback would help.
     Oh yeah, the aspirin thing seems to raise some controversy. I am on one adult tab a day and have been off Coumadin (warfarin) since 3 months after my heart attack, which was caused by plaque, not clots. My doctor also said that Tylenol was the only other over the counter med I could take for headaches and with codeine for my back pain. I do this seldom since 14 pills in the morning and 9 at night seem like quite enough, thank you. This includes a couple of vitamin tabs and an additional 2 tabs of salsalate for my recently diagnosed arthritis. What are your thoughts on Tylenol? kamikaze99@charter.net


Jon's November 5 reply to Michael's November 5, 2002 - Hi Michael, Salsalate is basically a long-lived aspirin - something to be aware of since it means you are taking more than one aspirin daily. That may be perfectly okay, just be aware of it.
     I personally believe the drugs we take for our CHF are more responsible for memory loss and mental fuzziness than oxygen deprivation. I believe this because my problems have persisted with zero improvement long after my heart function improved a lot
     I think Tylenol is fine as long as you never take more than the directions call for (it can damage your liver at higher doses), and as long as you do not drink alcohol or take Coumadin. Jon.


Jon's November 5 reply to Ingrid's November 4, 2002 - Hi Ingrid, This could be caused by anything from your heart to shoulder bursitis to nerve problems to who knows? ;-) I would definitely get your doctor to address this to be certain. Jon.


Jon's November 5 reply to Rosmarie's November 4, 2002 - Hi Rosemarie, I'm only addressing the cramps here. Does he have his electrolytes tested regularly by blood testing? An imbalance in this can cause terrible cramps. Jon.


Sheryl C's November 5 reply to Jon's November 5, 2002 - Hi, To all those on a low carbohydrate diet, check out spaghetti squash. It only has 7 carbs per cup and can be used in place of pasta. It has a great crunch to it that helps that craving too. It also can be tossed with other veggies for a yummy side dish. Here is the nutrition info: www.uhhealthsmart.com/tools2/vegetable/spag_squash.lasso. There are many recipes on the web. Enjoy! Sheryl C. cvprehab@hotmail.com


Karen R, November 5, 2002 - Hi everyone, I have had DCM for 4 1/2 years now. My EF started at 20% and is steady at 45% for the last year. Needless to say, in spite of everything, I am very overweight and my cardiologist keeps suggesting gastric bypass surgery.
     My question is: Has anyone had this surgery after they were diagnosed with DCM? How did it go? I guess right now I would like to stay far away from any more medical procedures so I'm just gathering information, positive or negative. Thanks. Karezybear@aol.com


Kathleen T, November 5, 2002 - Hi all, I am a regular browser but not a regular poster on this site and I feel like I know you all. I have something to add regarding foot and leg pain. I was having horrible pain in my feet and legs on 12.5mg Coreg twice a day. I couldn't walk, and just relaxing my feet was painful. When I went to my 4-month check-up and told him all this, he assessed me and reduced my Coreg to 6.25 mg twice a day. A few days later I realized that my pain had been reduced and a week later I realized it was gone. It's been 2 months since the reduction and I've had no pain at all. I'm 33 with DCM since February of 2001. I just wanted to share my experience since I know there is a lot of debate over whether Coreg has a correlation with foot and leg pain. Stay well, everyone. KMcTim@aol.com


Myrtle's November 6 reply to Sheryl C's November 5, 2002 - Hi, Thanks for the link to the veggies. Spaghetti squash is a great food. If it is too large, some market sections will cut it half for you. I like it best just cut in half, add enough water to cover the bottom of a long glass dish, cover loosely with Saran Wrap, and bake in the microwave until you can use a fork to pull strands out. Serve with any low-sodium sauce. Experiment to find your favorite. It's great with marinara sauce and even with low-sodium bullion. Bon appetit! omie@axs4u.net


Jon, November 6, 2002 - Hi everyone, Well, I have so much going on that I can't find the energy to always update everything. However, I want to informally address some studies that have been presented lately.
     One analysis of Framingham Study data shows that CHFers are living longer than doctors thought. Of course, everyone here already knew that. <g> However, due to the way they analyzed the data, I have to shout that they blew it again. Our survival stats are better than this most recent study says they are! Start with this archived post (let it load) to see some basic problems I have with the Framingham Study and our survival estimates: Jon's August 2, 2001 reply to Don C's August 2, 2001.
     They picked very poorly thought-out time frames to compare. Using data from 1990 to 1999 means they combined years with little or no beta-blocker use (1990 to 1994) with years of rapidly expanding beta-blocker use (1995 to 1999). This also holds true for some heart attack therapies, stroke therapies, and surgical interventions; all of which made rapid progress in the last half of that decade.
     Further <g>, they only studied data on about 300 CHFers in each time period! This is roughly 1,000 CHFers overall, hardly enough to draw general conclusions. I think if they had used better thought-out time periods and much larger numbers of patients, they would now be greatly improving our mortality statistics beyond what they do in this study.
     Another recently released study from Yale suggests that digoxin could be dangerous for women. This was not a trial. Researchers went back and looked at an older, already completed trial and "studied" something that trial was not designed to study, yet they drew conclusions anyway.
     The actual difference between men and women's death rates in that older trial using their statistical methods - which is the only kind of studying done here - was only 4.2%, not 23%. That number they throw out so casually - 23% - is a relative risk reduction, which is commonly used but it makes a study look more conclusive than it really is. I always look for absolute risk measures, which are the real deal. What this study means is that a real trial needs to be done to study the issue.
     Did you know that about 85% of all "studies" done in the USA in the last few years have actually been this kind of thing: where people go back and try to get new results out of old trials that were not designed to study that result? It's the main reason why so many fewer new studies show up on my site than used to be the case. These studies are weaker and less conclusive, and are really number manipulations using statistical analysis without generating anything "new."
     It makes my task much harder because I have to decide just how weak any given study's methods and conclusions really are, to decide whether to try explaining it. Also, regarding these reviewes of older trials, please note that diastolic heart failure was not taken into account because when the trials were done, it was was considered extremely rare. Now we think roughly half of CHFers may have DHF. How does that affect such an analysis?
     These 2 studies I have little faith in right now. If someone actually does a trial to test the digoxin theory, I'll be the first to shout the results, whether positive or negative. For now, if I were a woman I personally wouldn't give this a second thought. Jon.


Jon, November 6, 2002 - Hi everyone, I need some early input, please. If I had a panel of doctors discuss a set of topics "real-time" and you were allowed to ask questions directly of them as well, what topics would be at the top of your list?
     There are no topics off limits: symptoms; drug, device and surgical therapies; tests new and old: alternative therapies and supplements; emotional issues; end of life issues - anything goes on this one.
     I hope to collaborate with a panel of cardiologists in the near future, making them available to all my readers at specific times. I need a preliminary list of actual real-life patient topics of concern. I honestly believe that you can make a difference in the next 12 months in how doctors view patients through our upcoming efforts at this site. Please e-mail me your hottest topics for doctors to answer. Thanks, Jon.


Ben B's November 6 reply to Jon's November 6, 2002 - Hi, I've got to agree with you. Now that these knuckleheads publish their findings on the web for anyone to read, they need to be a little more careful about how they put things, and whether they really have any validity. This is ridiculous. An 11% 30-day mortality? How can they even tell this? Thirty days from when? I walked around with severe symptoms for about 3 months before I even went in to see a doctor. When did they start the clock on me? A 70% 5-year mortality? This is absurd. What people are they talking about? Granted, I know they are trying to show a trend, and the percentages are likely different in 1999 than in 2000, but I imagine they are so much remarkably less since the advent of Coreg and extended use of Coreg in the late nineties that it renders this data useless.
     This is why people get so frustrated with medical studies. Some poor newly diagnosed person is going to come along and read this nonsense and think there is a 70% chance they'll be dead in 5 years. Come on! Do these researchers ever get out in the real world? I wonder if any one of them has read the posts on this site from all the "corpses" they have predicted. Just remember these are the same geniuses who told people beta-blockers were bad for them for countless years. bdbrinkman@juno.com


Ben B's November 6 reply to Jon's November 6, 2002 - Hi, Just an additional thought: I'd sure like to get some of these researchers working for my disability insurer or the SSA because the guys that wrote this study sure seem to have a different point of view about my chances than UNUM insurance! <lol> bdbrinkman@juno.com


Jon, November 6, 2002 - Hi everyone, About the input I need, I set up a form to make it easier. You can send your ideas straight to me there (url removed when page was taken down). Jon.


Catherine L, November 6, 2002 - Hi, www.healthychoice.com has some great low-sodium, low-fat recipes. Mel G, thanks for your nice reply to my post. As my Coreg goes up, the "hurty" feeling around my heart has decreased. My doctor said it was nothing to worry about. Sometimes it happens when I lie on my left side or put pressure there. I don't have angina.
     Since an echocardiogram, I take it, is less accurate than a thallium stress test, which said I have an EF in the 40s, not 30 to 35% per the echo, I take it I may have had an EF in the 40s from the start? My doctor said Coreg usually doesn't work on the EF in just 3 weeks.
     Last week I walked 31.7 miles! I do at least one to 1.5 miles at 3.5 miles per hour on a 5% incline. Since I lost my job in August, my new job is now doing everything I can to improve my health. Emotionally I am feeling better, although I still have sad days. ccash@kcnet.com


Jon's November 6 reply to Catherine L's November 6, 2002 - Hi Catherine, The echo is generally considered to be roughly 6 to 7% less accurate than a MUGA. It is probable that your EF has not yet changed although it is possible. Jon.


Stacey, November 6, 2002 - Hi, I have to agree with Jon and Ben that some of these studies are ridiculous. I am 32 years old and was diagnosed with DCM in March. I have never had any symptoms of CHF. I went to the doctor because I was having heart palpitations and he decided to do an echo on me. When my doctor got the results he told me that my echo had been mixed up with someone else's and that we had to do another echo. We did another echo and couldn't believe the results. I had an EF of 20%.
     I immediately found a CHF specialist and have had every test done that they could possibly do. My problem is that I get so upset when I read about these studies on the Internet. My grandma is living proof that these mortality studies are not true for everyone. She was diagnosed with cardiomyopathy 10 years ago at the age of 66 and is still going strong today at the age of 77. She just started Coreg 4 years ago. We can and we will live with our heart conditions. My doctors told me right away that at least I didn't have a disease that they could not treat. CHF is treatable.
     We have to take a lot of drugs and make a lot of life style changes. I think a lot of people who have an untreatable disease would change places with us. There is so much that doctors can do for us. I would love to know how many out there have had CHF and cardiomyopathy for more than 5 years! I think we need positive posts! It would make us all feel good! DSRivara@aol.com
 
Jon's note: I was diagnosed in 1994 with an EF of 13%


Dorothy P's November 6 reply to Ben B's November 6, 2002 - Hi Ben, It took months and visits to a number of doctors in an effort to get UNUM to approve my Disability. Finally, one of my doctors sent me to a psychologist who did testing to determine my IQ. I had a stroke, which was affecting my ability to do my job but it seems to me that many CHFers who write to this site have very similiar complaints: forgetfulness, fuzzy thinking, etc.
     Everything the psychologist did was timed. He said this is to create the type of stress under which many people perform their jobs. This is only a suggestion but I you might consider it since UNUM finally approved me after my IQ tested 79 - it had been around 125. Best wishes, Dorothy. DPowell806@aol.com


Vee's November 6 reply to Jon's November 6, 2002 - Hi Jon, I've always wondered whether you've considered doing some informal surveys of all of us who visit your site. I think many of us would be more than willing to participate since there's no question that you would ensure our confidentiality! I visit other health-related sites that do this and the information is always interesting, at least to people with the disease, or to family and friends - even if no conclusions can be drawn. imagine_@earthlink.net


Jon's November 6 reply to Vee's November 6, 2002 - Hi Vee, That's a good idea. I'll have to think about survey topics that would interest large numbers of readers.
     For this topic deal, picture a group of CHF doctors. You can give each doctor a topic and each doctor will speak about "their" topic for say, 20 minutes. Then you get to ask him questions and he'll do his best to answer them then and there.
     What topics would you throw into such a situation? Jon.


Tom S' November 7 reply to Jon's November 6, 2002 - Hi, It seems to me that the veracity of any study performed by the medical profession can be called into question because it seems give enough time they do an about face following "additional studies." The medical profession to me is a necessary evil, and yes I have gained a few years of life because of the "miracle drugs" and procedures, but my quality of life is nowhere near what it was prior to the onset of this thing called CHF. It is ultimately that quality and ability to function on a daily and productive basis that is the true yardstick by which "wellness" should be measured.
     Medical science has already proven many times over it can sustain and maintain life for many years in the human organism with mechanical and artificial means. The fact that the human in question may be comatose doesn't seem to enter into the equation by using the longevity yardstick to measure life.
     Certainly I appreciate the 6 years I have had thus far, and welcome each additional day with as much vigor and enthusiasm as my body will allow. Physical realities soon set in from the moment I do awake to a new dawn, and the fact that I am very limited in what I do is evident from the opening moments of conciousness.
     While the studies indicate years have been added to the life expectancy of a CHFer, we have to be very careful that it does not somehow become translated to mean a higher quality of life that would negate SSD payments to thousands who are functioning at a minimal level. That would be the next step and no doubt the very purpose of such studies. bigheart@muchomail.com


Jon's November 7 reply to Tom S' November 7, 2002 - Hi Tom, I agree with all that at least to some degree. I see the underlying problem being that patients are not part of shaping doctor's thinking about what makes medicine good for the end users: us.
     We are not considered scientific thinkers so we are excluded. However, as the ultimate end users of the data from these trials, we should have input into not the methods used, but into proper goals for CHF research.
     Like you say, much of what doctors view as purely good advances have hurt some CHFers terribly. I brought this up 3 years ago and doctors blew me off. Now the very same doctors are reluctantly admitting that indeed many Coreg users are being booted off Disability who are still unable to work. This is beginning again with the BNP test being used for things it is unsuitable to do.
     The question becomes, how do we get their ear? How do we become part of the process? I am working on one possibility but would welcome any and all ideas from every person here. Jon.


Scott Brown's November 7 reply to Ben B's November 6, 2002 - Hi Ben, Last year at the age of 32, I was diagnosed with class 4 CHF. When I looked up the statistics, it was a dismal outlook. With meds, I feel much better now. I would be a class one or 2. I can participate in sports again but I reach my top heart rate quicker.
     In my mind, I kept thinking of the statistics. Those statistics are for people who are class 4 and remain class 4 (short of breath at rest). I would have appreciated more discussion around this, including in Dr. Marc Silver's book. Thanks, Scott B. kitchenerguy@hotmail.com


Jon's November 7 reply to Scott Brown's November 7, 2002 - Hi Scott, Just to avoid future confusion, it depends on which study you quote as to what heart classes are included. The most-quoted such study is "Survival after the onset of congestive heart failure in Framingham Heart Study subjects." That study does not take heart class into account for figuring mortality, rather any diagnosed heart failure (at least in the summary). It's very lame for many reasons. ;-)
     The most recent study on CHF mortality in the last issue of The New England Journal of Medicine also did not specify heart class as it relates to mortality - at least not in the summary. Jon.


Scott Brown's November 7 reply to Kathleen's November 5, 2002 - Hi Kathleen, I have some foot pain. I thought it might be edema, although there is no swelling. My foot pain is not bad enough to limit my life style at this time. I keep working out on it, and it really seems to help.
     If the culprit is Coreg, I must say that this medication seems to do a world of good. Although I am very tired, I have increased to the max recommended dose of 50mg twice per day. So far I am pretty fatigued but I know from experience this will pass. I want to make sure I am getting the maximum benefit from this drug. I would be interested in knowing the correlation between the amount of Coreg taken versus the relative benefits patients see.
     I realize there are some patients who cannot tolerate large doses of Coreg. I am pessimistic, but I'm sure something better than Coreg will come out just before the patent expires and generic manufacturers can jump in. Scott B. kitchenerguy@hotmail.com


Myrtle C, November 7, 2002 - Hi, I have small veins that tend to move and blow. The last time I had to have an IV, the nurse could not get a good vein. She agreed with me that because I wasn't to eat or drink anything for 8 to 10 hours before the procedure, I had become dehydrated. Next time I will drink a small amount of water and see if that makes a difference. Getting 5 or more sticks is not a good way to start any medical procedure. Any thoughts on this? omie@axs4u.net


Gino's November 7 reply to Jon's November 7, 2002 - Hi, Aas you know, I'm a CHF specialist and I'd like to give an opinion about about quality of life and "doctors." Trials are scientific attempts to create a simple "model" of something (the illness) that in the real world is far more complex.
     For example, in a person with a well-defined illness, I give a drug and verify what happens respecting a person who does not take the same drug for some variables, usually "hard" and "easily" measurable: years of life gained, improvement of physiologic parameters like EF or meters walked on a 6-minute walk test.
     Quality of life in its full meaning is an extremely complex and subjective concept that includes many individual, social, environmental and also political variables. We have very few comprehensive methods to evaluate these aspects of QOL so we have to rely on the simplest physiologic variables like EF, ventricular volumes, creatinine, Charlson index, Vo2max and so on, well conscious that our judgment is very limited to the physiologic aspect of QOL.
     Applying this method we were able to show that beta-blockers, a class of drugs formerly contraindicated in CHF save lives in CHF patients, often preserving a dignified life-style if CHF is diagnosed early. Finally, I would say that if a patient with an improved EF loses his SSD, you should remember the fault is not of the doctors but of health agencies and politicians that decide about money. Ciao. gitarant@yahoo.com


Jon's November 7 reply to Gino's November 7, 2002 - Hey Gino, It's good to hear from you! You make some good points. Maybe I haven't been specific enough. One of my main complaints is the stretching of statistical analysis to force "new" data out of old, already-completed trials. If the trial was designed to measure (prove or disprove) endpoints A and B and then the trial was completed, how valid is it - really - to go back to that trial data 5 or 10 years later and look for endpoint C that the trial was never designed to test? The statistical methods can be so complex that some very good cardiologists with whom I speak do not understand them all. Yet, they rely on the results of such "analyses." That worries me.
     About loss of patient Disability income, I partly agree with you. Yes, it is largely the fault of the government bureaucracy administering the program. However, doctors for years refused to even admit the possibility that a significant subgroup of CHF patients on Coreg had large test measure improvements (EF) but did not see their exercise ability improve at all. Because doctors refused to admit and address the existence of this subgroup in the USA, the Disability adminstrators figured the group did not really exist or was so small as to be insignificant. That was not the case.
     So if doctors and researchers do not adequately listen to their patients when told about such cases, and thus refuse to address it as an important issue, I do blame doctors and researchers for part of the dilemma. Even now that USA doctors are seeing this happen in their own practices - and you know that studies now show that many CHFers on Coreg do not improve in ability to function - they are not doing any studies to address these patient concerns. I suppose there's no money in it. If they did, it would give us patients more leverage to use with the Disability administrators. Thus, I pass the blame all around, including to doctors and researchers.
     This is not personal! I know that you and many other doctors stand up for their patients' rights and address their concerns even more than you probably should. However, we are talking about doctors in general - in the USA - and many take trial results as gospel but only employ them selectively and unevenly. You know how true this is from all the survey studies showing how poorly many (maybe most) doctors follow even published treatment guidelines.
     I bleated a warning about all this 3 years ago and was throughly rebuked by medical professionals in my country. I am now squawking about the misuse of the BNP test by researchers who are stretching a diagnostic test into disease management and even prognosis purposes. I believe this is unfolding in the same way described above and that doctors here have not learned anything from the Coreg "lesson."
     Gino, when was the last time a large group of patients had input into what endpoints were important to them? We are the ultimate end users - the ones far more affected than doctors by the data gathered and then acted upon. Why don't we have more say in what we want? Now, I know this particular discussion gets complicated fast. <g> However, I believe the principle is valid. Patients are not yet considered full partners in their own care. This is not by any means entirely doctors' fault! Patients bear much of the blame. However, it is a situation that must be corrected if the doctor-patient relationship is going to become more satisfying to both.
     You and me and people like my readers are going to help it happen, Gino, because we all do want patients and doctors to be partners in care! You are one of the most patient-oriented doctors I have ever met and I know that in your sphere of influence you always put your patient first. It's good to know there are doctors like you out there every day doing so!
     However, doctors who refuse to see things like the Coreg/exercise/numbers problem and the potential BNP problem even after they arrive, do harm patients although it is unintentional. They do not consider how precarious our situations may be. I had one highly placed doctor recently claim I was making things up because (I am paraphrasing because of my privacy policy) "They couldn't possibly be taking people off Disability for that!"
     Patients and doctors live in different worlds and we must bring those worlds closer together if patients are to survive the experience with that dignity you seek for those you treat, Gino. Many doctors and researchers in the USA live in an insulated academic world where patients are an abstract concept more than real people. Academia has that effect in our country; I hope not so much in yours. Again, not all doctors are this way by any means, but many are.
     Regarding QOL, I think both Tom and I are speaking about physical markers of QOL but we believe trials should also address patient-rated physical QOL instead of only objective test-measured physical QOL. Just using test measures of physical function is not enough. A recent study showed that how disabled a heart patient thinks he is more accurately indicates his real level of disability than his test numbers! Questionnaires need to be standardized and used to measure patient-rated QOL, just as MUGA and echo are used to measure EF in standard ways. If the tools are not good enough, let's work on making new and better tools instead of just sticking with the old ones.
     Man, can I ramble on or what?! Sorry. I am sort of passionate about patients, being one myself. <g> Jon.


Hal, November 8, 2002 - Hi Gang, Just one question: Are any of you aware of or had any experiences with state run departments that focus on our rather unique situations, employment wise? Folks that can place us in jobs knowing that we may not work out? I would love to hear from folks that actually hold jobs and how things are working out for them, particularly folks trying to get over on very small disability checks. Best wishes and love to all. uncahal@webtv.net


Sheryl C's November 8 reply to Myrtle C's November 7, 2002 - Hi Myrtle, How unlucky for you that your veins are such a challenge. Never let the same nurse stick you more than 2 times. If she can't get it in 2 tries, chances are she won't get it. Nurses can have "off" days where they can't hit the side of a barn with a needle and some nurses are just better than others with small veins. It's your body, so twice is the limit. Sheryl C. cvprehab@hotmail.com


Joe S' November 8 reply to Tom S' November 7, 2002 - Hi Tom, Amen. I agree completely that most doctors seem to think we know nothing about our own conditions and treat us accordingly. I had a defective aorta valve for 63 years and contrary to what they seemed to think, I do have the intelligence to be aware of my condition and can regulate what I can and cannot do.
     Like you, I was given a death sentence of 5 years, 5 years ago. When they finally replaced my aorta valve 8 months and 2 days ago (who's counting? <g>), and with eating and exercising right, my life expentancy has been extended by 10 more years. My biggest complaint is that the drugs they gave me made me a zombie for 6 months until I learned to regulate them myself.
     According to my doctors, I still have corornary artery disease and blocked arteries. I don't believe that either case is true, but they won't listen. I feel as though, at least in Nevada, doctors think all heart patients have the same problems. Oh well, I praise God that as of this date I feel better then I have for 10 or more years. I still miss those pastramis though! Joe S. jes@gbis.com


Gino's November 8 reply to Jon's November 7, 2002 - Hi Jon, I have read the "post hoc" analysis about digitalis in women of the DIG trial. It seems to me that women in the trials were more older and sicker than men, and this together with the consideration that it is a post-hoc analysis of a study designed for other purposes, raises in my mind many doubts about the clinical relevance of this result.
     About doctors who do not listen their patients: are they doctors? In these last years, the history of CHF was completely rewritten. Probably this has made insecure and has "stunned" many doctors, especially those non-specialized in the management of CHF patients. In my experience, I have also had a lot of difficulty communicating with other docs non-specialized in CHF. ;-) Ciao! gitarant@yahoo.it


Jon's November 8 reply to Gino's November 8, 2002 - Howdy-doo Gino! You sound just like my own CHF doc. He was answering questions for a reader once and told that reader, "Are you sure your doctor is a real cardiologist?" <lol> Medicine is like any profession: some are better at it than others and some are more passionate about it than others. Also, medicine is still an art as well as a science and doctors who insist on employing only rigid scientific rules and never follow their instincts tend to be overwhelmed by the success of "good" doctors who use all their sense and senses to treat the whole person. So it went and so it goes. <g> Keep on doctoring, Gino. You're a good influence on the doctors around you.
     One thing I want to pop in here is that as I review years of e-mails and posts to distill topics for a panel of doctors to address, something becomes clear to me. We patients aren't very good at expressing our real concerns either. I sat down to list my own topics to give me a starting point and discovered that I had great difficulty putting them into easy to follow words and an even harder time assigning them priorities.
     I suppose I somehow expect doctors to know what I mean instead of what I say. I am working hard now to be more specific and more clear in exactly what I want and expect from doctors. It's something we all might try - sit down and write out a list of your "topics" of greatest concern. Assign them an order from most to least important. Now ask yourself if a doctor who does not know you or your personal health or situation would really know exactly what you want answered from what you just wrote? It's harder than I thought. ;-) Jon.


Nick Kanterakis, November 9, 2002 - Hello my friends, My name is Nick and I'm a 62 year old male, diabetic type II. I had 2 strokes 7 years ago and I do okay now so to say. I had a double bypass 6 years ago and at that time I was told that I had heart failure. I come to this site after getting your address from another person with heart failure.
     For starters, I found this site because I posted a question on another group. My problem is that 3/4 of the time I feel tired with no energy, headaches, high blood pressure, etc. I'm not going to get you all tired with my blabbering now. I'm going to see the doctor this coming Monday. I'll check your site from one end to the other. Thanks for allowing me to come in here, Nick K. nk1234_2000@yahoo.com


Vee's November 9 reply to Jon's November 7, 2002 - Hi Jon, I'm afraid I have no burning discussion topics just now for the docs. On my wish list, I'd be interested in a periodic literature review and commentary by experts on the good, the bad, and the ugly in current research findings and CHF trends. I know that's a tall order and probably not a priority for many others.
     As far as getting the ear and playing a key role in the research development process, I think this is one of the many possible uses for some carefully planned surveys. A profile of who we are; why, when and how we use this site; our functional capacity, disease management strategies, experiences with activities of daily living, work, disability benefits, the medical community, and many other topics would be really interesting.
     I suspect that we, the readers on this site, are typical of the larger CHF population in some ways but differ a lot in others, probably even in those 5-year mortality stats! Bringing data to the table could also be quite useful if you're looking to develop partnerships and sponsors in the future, or counter some arguments from critics. It could also be a way for us to safely provide some feedback to you.
     Sorry to go on and on, off the topic and with a lot of unsolicited input but hey, taht's what happens sometimes when you open the door a crack. ;-) imagine_@earthlink.net


Jerald Pelzer's November 9 reply to Vicki's November 4, 2002 - Hi Ms Vicki, When they put me to bed my blood pressure acts the same as yours - it goes up. At midnight the nurse gives me 2 blood pressure pills. I go to bed at 8:30 to 9:00 PM and they get me up at 4:00 AM. When sitting in my wheelchair, I feel much better. I'm quadriplegic and have CHF with a 30% ejection fraction on the left side of my heart.
     With regard to this kind of blood pressure, they tell me it's hydrostatic hypertension. I frequently read this board. This is my first post. Jon, where do you find the energy? Jerry. jpelzer@prodigy.net
 
Jon's note: gift from above


Jon's November 9 reply to Vee's November 9, 2002 - Hi Vee, My main concern lately - aside from helping people learn how to cope with heart failure - is to start reshaping the patient-doctor relationship into a partnership. Thousands of e-mails and posts and years of conversations convince me that the only thing as frustrating to most CHFers as their CHF is what they perceive as doctors not listening. I have a partner and we are working on a first step toward changing this on a large scale. You - the readers here - will be a critical factor in this step.
     Surveys are tricky business. First is the privacy issue, a big one to me. I will need a very trustworthy and technically savvy partner before trying one. Also, surveys can mislead because the results are shaped by the questions asked and also because there is no further clarification possible beyond the initial survey. There is no real-time give and take, questions and answers. This leads inaccurate conclusions to be accepted as facts when a simple face-to-face might spin things in a whole new direction. That's why I am leaning toward getting doctors and patients together in groups, especially online, and letting them teach each other about their respective realities.
     Will it work? I think so. Will I be able to help pull it off? I don't know. However, the momentum toward patients as partners in care is gathering momentum, partly due to this site's wealth of input from you guys. Keep it up! Jon.


John S' November 9 reply to Gino's November 7, 2002 - Hi, I came to this wonderful site via a Yahoo search. This site was first on a search of "CHF + fosinopril" - amazing. I am a general practice MD who has CHF, age 45. Gino is right! I am stunned by the changes in CHF management. Unfortunately, physicians practice medicine usually by the year they graduated from medical school so I can understand why most PCPs don't have a handle on it. In 1983, the year I graduated, there were no CHF docs. My question to Gino is, how and when did you become a CHF doc? Were you a cardiologist first? Finally, how long do I got, doc? John S. drjohnmd2000@yahoo.com


Jon's November 9 reply to John S' November 9, 2002 - Hi John, Since Yahoo still hasn't listed this site under cardiomyopathy but only under heart failure in their index, the search return is surprising. I would like to thank every one of you out there. If you guys hadn't written all those e-mails toYahoo awhile back, this site would not be listed there at all! Thank you very much! :-)
     I'd like to address that CHF doc question if I may. Many USA doctors - even cardiologists - swear there is no such thing as a CHF specialist. Technically in the medical world's institutional mentality, they are right since it is not an "officially sanctioned" specialty. However, they are 100 percent wrong in reality.
     A CHF specialist is a practicing (clinical) cardiologist whose patients are at least 51% heart failure patients. That's my take on it and I'm sticking to it. <g> It is pretty well proven that patients in the care of this group of cardiologists have better outcomes and better quality of life than those under the care of general cardiologists, internists, and PCPs.
     I would not expect a PCP to stay up to speed on CHF management. However, for all you internists out there, I have one word: CME! <g> Jon.


Ann's November 9 reply to Vicki's November 4, 2002 - Hi Vicki, I often have that too. Another name for it is postural hypotension and it occurs frequently in dehydrated people. It's easier for the heart to pump blood when one is horizontal - no hills, so to speak. Sitting or standing up means the ticker's got to pump uphill, and with low volume of blood as in dehydration, it can't quite keep the circulation as smooth as it could lying down. I have to at least weekly not take my diuretic because I get too dizzy to stand and my blood pressure goes to 70/40 standing. A day off it returns my blood volume enough so I can walk, etc. rothwella001@hawaii.rr.com


Catherine L's November 9 reply to Jon's November 6, 2002 - Hi Jon, What's a MUGA? Is a MUGA the same as a thallium stress test like I had, where they inject radioactive stuff into you and while you are sitting, see if you have any blockage? That's what they did for me, and on the basis of that and the 2 scans they did before and after the injection of the radioactive stuff (all on the same day), they said my EF was in the 40s. Maybe I am making too big a deal out of it, but I'd like to know what my EF is - which is more accurate.
     By the way, I am have a CPX (cardiovascular stress test) done at Marc Silver's hospital, Advocate Christ Medical Center in Oak Lawn, Illinois on November 25th. I'll be visiting family in Chicago over Thanksgiving so I arranged it. I will also ask Oak Lawn to analyze the test and I will ask their doctors to make recommendations for exercise, since doctors don't do the test here in Kansas City.
     Hopefully, that will help me decide how far to push my pulse rate when I exercise on Coreg. For now, it seems if I go over 120 beats per minute, I don't feel so good, so I am not going over that. I also told the guy at the cardiac rehab I couldn't do a 6% incline at 3.5 miles per hour, and put the incline back to 5%. It was too much. I am going by what my body tells me, even though the rehab guy says he can get me to a 15% incline. I don't see how I can do it without killing myself in the process. ccash@kcnet.com


Jon's November 9 reply to Catherine L's November 9, 2002 - Hi Catherine, See the tests page for links to tests like MUGA. You had what I would call an "exercise MUGA" or "thallium stress test." - same thing as far as I know.
     You have me confused on some things, though. They do CPX, Vo2max, MUGA and other such tests in Kansas City at several locations. When you say CPX, do you mean a Vo2max test? Again, see that tests page for more.
     A 15% incline is very steep for a CHFer. I couldn't do it for long at all and I exercise every day. Then again, I don't really know your situation. Jon.


Michael S, November 9, 2002 - Hi All, I have a question. How do you really know if your doc is a CHF specialist or not? I have read the articles here and still have no definitive answer. I go to a clinic and am treated by the same doc that helped me in the hospital. The problem is that only one doctor in their office is listed as a CHF specialist on their web site although all the doctors are listed.
     His nurse says he is. I am pleased with the treatment I am getting although I have not seen my cardiologist in 11 months. If I do have questions, his nurses call me back with answers from him. I have a scheduled appointment with him in December, which will be a year since we have communicated. I have had a MUGA and an echo plus 2 or 3 EKGs at his clinic, and 4 visits to have my Medtronic ICD checked by my surgical cardiologist.
     Last week I went to Club Med for the first time in 8 months because I was having some unexplained pain in my chest. It turns out that I was being paced and nothing else. It feels like my heart is jumping up my throat. Do ICDs report on pacing as well as defibrillations? Sometimes I get the same feeling when my heart rate is over 100 beats per minute when I exercise. It is set to pace at 45 bpm. The doctor says that palpitations feel the same. is that true? Thanks for letting me ramble. I can never seem to get to the point easily. kamikaze99@charter.net


Susan B, November 9, 2002 - Hi everyone! My husband was cardioverted for the second time in 2 years. About 4 to 6 weeks after the cardioversion he is again turning blue and not doing very well, just like after the first time. Has anyone else seen this pattern? It could be that he is overdoing it now that he started feeling better. I am not sure. He is not blue when he is resting, but he was raking the leaves and SOB. Thank you to every one here. As always, thank you Jon. Susan B. gbracher@kc.rr.com


Vic's November 11 reply to Jerald's November 9, 2002 - Hi, Thanks for your reply Jerald. I have another question and you will have to forgive me for my ignorance, but what is hydrostatic blood hypertension? I hope you are feeling as well as you can. art_vic_payne@yahoo.com.au


Staci H, November 11, 2002 - Hi Everyone, Is anyone here on, or tried the Atkin's Diet? Besides having DCM and CHF, I am also a type II diabetic. I just bought a book written for diabetics by a doctor who has the disease, and specializes in its treatment. He recommends basically the same diet to treat this disease that Dr. Atkin's recommends for his heart patients. I know that the diet causes a lot of fluid loss, especially in the induction phase. Would I continue my diuretics during this time? Is salt really an issue, if you are losing so much fluid? Of course, I would definitely consult my doctor before starting such a program, but welcome any information that someone could offer me here on The Beat Goes On. Personal experiences would be great! Any opinions would be great too! I hope that everyone is having a good weekend. SunnyFLA6@aol.com


Jon's November 11 reply to Staci H's November 11, 2002 - Hi Staci, My wife and I started the Induction phase of the Atkin's Diet yesterday. I have no experience at this, obviously. However, I am maintaining my current diuretic dose until I see a definite reason to drop it. Whether a CHFer - who tends to retain fluid far more easily than regular dieters - will really have a large diuretic effect from this diet is unclear to me. I plan to be conservative all the way and change nothing but my diet until I see what effects really occur.
     As to salt, the Atkin's Diet is very hard to convert to low sodium. I am doing so but it has been a tremendous amount of work already to make induction recipes fit the need for high-fat/low-carb without too much sodium. The "Atkin's Kitchen" has done a terrible disservice to heart patients everywhere with the sodium-loaded recipes they have on their site. They even say to soak your poultry in saltwater before roasting it! That's outrageous!
     If I stick to this - which depends on the results - I will be putting some of these altered recipes on my Kitchen Corner section later. We'll see. Jon.


Catherine L, November 11, 2002 - Hi, My cardiologist says a CPX test is not necessary, that St. Luke's Hospital in Kansas City can give me a treadmill test while hooked up to an EKG and an oxygen saturation monitor (a clip on your finger to measure O2 in the blood when exercising). The St. Luke's test he says can give the same information as a CPX text. He conferred with the internist at St. Luke's, who is also their exercise physiologist. What do you think?
     At first I was really mad because he will not write the letter to Advocate Christ Medical Center requesting a CPX test there for me. They won't do one without a letter from my cardiologist. He says it's not indicated. I have idiopathic CM, an EF either 30 to 35% or in the 40s per my echo and MUGA, respectively. By the way, I am switching to a CHF cardiologist in 6 weeks, but I've not told my current cardiologist yet. I'll tell him when I see him then. Thanks, Catherine. ccash@kcnet.com


Jon's November 11 reply to Catherine L's November 11, 2002 - Hi Catherine, This is a bone I want to pick with the entire medical profession. As I understand it, the CPX is just a "new" name for the Vo2 or Vo2max test. A CPX test is a unique way to identify how well your whole body uses both blood and oxygen. No other test - no other test - can give the same information. Marc Silver calls it a "superior measurement" in his book. My CHF specialist wants me to have one every year to monitor me over time.
     I cannot guarantee what his answer would be, but if you still want the Vo2 test (CPX), you can have me ask Marc Silver about it. However, it would be easier to just have it done at KU Med, only 10 or 15 minutes away from St. Luke's. I am surprised St. Luke's quit doing this test - they did it for years. The docs did check the pulmonary testing unit, right? That's where the equipment is, across the street from the hospital proper. Jon.


Katherine H's November 11 reply to Michael S' November 9, 2002 - Hi Michael, For a message board somewhat like this one (although not as good), I would suggest you go to implantable.com for specific pacemaker and ICD information. There is an electrophysiologist who reads it and answers most of the questions at least on the pacemaker side. I don't know about the ICD side, although I would expect he would read that side too.
     Even though there is nothing there specific for biventricular pacing devices, I have found the discussion very helpful and it has helped me communicate with my pacer nurse about changes in settings. For example, I didn't know I could have different night and day settings, but after reading the information I asked that my night setting be turned down and I'm sleeping much better. You can also ask for a change in setting that makes your heart respond quicker to an increase in activity. Good luck! kholian@msn.com


Gino's November 11 reply to Michael S' November 9, 2002 - Hi Michael, Yes, usually an ICD reports any type of intervention hence also pacing. Your cardiologist is right: the sense of palpitation may occur both with fast and vice-versa also with extremely low heart rate. However, in your case if there was a concordance with symptoms and pacing, and if the lead is placed in the ventricle and your basic rhythm is normal, you could have what is usually called "pacemaker's syndrome." However the right thing is to discuss this with your cardiologist. Ciao, Gino. gitarant@yahoo.com


Chuck, November 11, 2002 - Hi, I have mild CHF from idiopathic DCM. Browsing posts at this site, I ran across the notion of avoiding crowds where you can catch viruses, like crowded elevators, etc. I take the bus to work here in L.A. through some of America's nastiest streets with loads of sick people, most illegal aliens with poor medical care. Is there some risk in this? Especially to a person who may or may not have had their DCM come from a viral infection? Dominico493@cs.com


Amelia's November 11 reply to Jon's November 9, 2002 - Hi Jon, How right you are about how to determine if your doc is a CHF specialist. I have been to many doctors in the past and they all agreed I have cardiomyopathy and gave me beta-blockers. Some gave me Lasix to take only when I needed it, if I gained more then 3 lbs overnight, but none ever said I had a major problem, nor take into consideration of anything else that could happen. They said my arrhythmia was not life threatening and basically left me feeling that I was imagining my SOB, palpitation, and extreme fatigue.
     I finally went to a group of CHF specialists, about 10 doctors. All are certified and 2 are specialists in electrophysiology in caths, 2 who monitor and install implanted devices, and the rest are extremely qualified in all aspects of heart disease and other testing. Boy, what a difference! You can choose who to see and will stay with that particular doctor. This group took tests that I had never had before, a TEE for one. I found out I had a-fib, interatrial septal aneurysm with a shunt, and confirmed being in heart failure that was diagnosed just 3 years ago from doctors in Florida.
     I am seen every week to every 4 weeks, am on Coumadin (warfarin), Vasotec, Toprol-XL, and Lasix. My EF was 23% three years ago and went up to 43 to 45% last April, but has now dropped to about 35%. A nuclear stress test in September showed loss of anterior forces, PVCs, functional capacity markedly decreased by 40% ventricular premature beats. When I read posts like Michael S not having seen or talked to his doctor in a year, well, I know I have the best. No way will I stay with a doctor that will not call and talk to me or dispense medication and not have me back within at least 3 months. Maybe Iam spoiled, but I want the best and will not hesitate to see that I am treated with compassion, concern, being able to share info, never hesitate to check out my complaints, and knowing that the best is being done for me.
     Everyone posting is such an inspiration and Jon tops the scale with his devotion, energy, excellent knowledge and caring so much to help others. God bless all of you, Amelia. amelias@erols.com


Gino's November 11 reply to John S' November 9, 2002 - Hi John, I'm Italian, age 44 with MD degree and specialization in cardiology and pneumology. My interest in CHF arose when I was an internal med student at the university in early 1980 and I had to care for patients with DCM. In those years there was a big interest on drugs with positive inotropic action like dobutamine, amrinone, milrinone etc,..., and it was very frustating to treat an illness considered at that time as fatal and with a prognosis comparable to cancer.
     Then I decided to go leave the university (for the reason that Jon has well explained in his post). Now I work in a general hospital in a medium size town where I care for CHF patients. As in other field of our profession, expertise in CHF grows first from caring people and then reading, studying and discussing with colleagues.
     A good starting point to understand the right thing about CHF management are the recent revisions of guidelines of the AHA/ACC (download free from Circulation and American Journal of College of Cardiology) and of the European Cardiology Society (download free from www.escardio.org). These latter are more extensive and could be suitable for a non-cardiologist. I reccomend warmly also the ABC serie on CHF (6-8 review) published in The British Medical Journal in the year 2000 that you may download free from www.bmj.org. Furthermore, there are many books on this matter and I can give you my favorite references if you would write me.
     My impressions after near 20 years of treating CHF? I'm very glad for the advanceds seen in these years. I have many patients that I diagnosed with CHF more than 10 years ago. I'm very worried about the cuts to the healthcare systems, which have a strong negative effect on quality of care for CHF - an illness with an explosive epidemic trend in prevalence - patients overall, for the elderly, and for lower class patients.
     I "discovered" this place by means of Yahoo too, long ago (Remember, Jon?) and I must sincerely say that I have learned many things here and overall I have met many wonderful people in spite of the different language and the huge distance between Italy and the USA. Write me if need some more references and I'll be very happy to help you. ;-) Ciao e a presto, Gino. gitarant@yahoo.com


Jon's November 11 reply to Gino's November 11, 2002 - Hi Gino, I remember alright. Gino has patiently explained so many CHF items to me over the years I almost consider myself one of his patients. <g> To everyone, I got waaay behind today and will try to catch up the rest of the posts tomorrow. Jon.


Gino's November 12 reply to Ann's November 11, 2002 - Ciao Ann and Vicki, I read your letters about postural hypotension. A little counsel: Watch the hours right afte reating. In that time blood vessels in the stomach and bowel relax and widen, enhancing the fall of blood pressure. This is further enhanced by taking diuretics around meal time, by hot weather, and by being upright for extended periods. Gino. gitarant@yahoo.com


Mel G's November 12 reply to Michael S' November 9, 2002 - Hi Michael, Yes, your ICD will report any pacing or any cardioversions or defibrillations that you've had since the last interrogation. Ask your electrophysiologist what is "turned on" to function, and under what circumstances it will kick in on your particular device. I have felt the same kinds of things you have, which turned out to be small pacings or just natural heart palpitations. I also feel the same thing when the Guidant rep has interrogated and checked the threshold levels on my ICD. It's kind of a yucky feeling, and "heart pounding right in your throat" describes it pretty accurately, I think.
     Don't worry about rambling. Almost all of us have that slightly muddled thinking thing happening too! Wishes for uneventful heart happenings. :-) Melanie. falmouth@bigpond.com


Mel G's November 12 reply to Catherine L's November 9, 2002 - Hi Catherine, Here's my understanding of the tests. Before the nuclear medicine folks put the tracer (technetium 99 most likely) in your blood, they put a binding agent in. That's almost the only difference in how they set you up to do a MUGA or a thallium stress test. The MUGA (called a gated heart pool scan here in Australia) results show how the blood is flowing, because the nuclear tracing element is attached to the red blood cells by the binding agent. They get a really good look at how the chambers are moving the blood in and out.
     In the "resting and stress" series, they use the thallium to bind the nuclear agent to the heart tissue and get an accurate look at the blood flow through those tissues as your heart beats. It gives them a very particular view of areas of poor blood flow or dead areas in the heart because they see where there is no blood flowing in the tissue. It also accurately measures blood volumes in and out, and both tests give a good ejection fraction.
     Keep listening to your body. My doc is happy when I exercise every day, but doesn't want me to push it until I feel ill: lightheaded, sweaty, nauseated or anything like that. Even though we all want instant results, small changes over time are really the best. falmouth@bigpond.com


Jim C, November 12, 2002 - Hi, How come I can even walk with an EF of 23% much less not feel deprived or like I can't do things? Can people have a "bad" echo or MUGA so the second opinion should redo the tests and not trust the results? Was a stupid night at my 30th reunion the cause of my CHF? I just don't understand how I feel so good with an EF of 23%. Is it possible my echocardiogram and MUGA were done wrong in 10/2002? I am getting a second opinion but wonder if the second opinion should rerun the tests?
     I was diagnosed with Left Bundle Branch Block in 1998 but both caths in 09/2001 showed my arteries were very clear. I also went from an EF calculation from a cath 9/11/01 (yes, I had it on that day) of 55% to the 27% per echo and the 23% per Muga.
     I don't ever remember being real sick from anything viral and I do work long hours (60 hours per week) with stress (in Finance) but I like the job. I don't smoke and only drink occasionally, usually at my poker parties once every 6 weeks (5 to 8 beers over 6 hours). I did attend a 30th reunion and had way too much tequila. I actually had to get a room at the hotel and pretty much passed out at 4:00 AM but woke by 8:30 AM since I had to be somewhere. I hope this didn't do it to me.
     My current doctor just has me on Diovan and Toprol-XL and said to come back in January of 2003. My wife thinks that's kind of like saying he has no clue. Sorry about the long-winded post. I think you all will understand the feelings though. Thanks. Tip15@Qwest.net


Dee, November 12, 2002 - Hi, A procedure called Cardiac Resynchronization has been suggested by one of my cardiologists. Does anyone know anything about this procedure? Any help is appreciated, Dee. gardengirl33@juno.com


Jon's November 12 reply to Dee's November 12, 2002 - It is CRT or Cardiac Resynchronization Therapy. See the pacemaker page. Also, don't forget to use the search engine when you can't find something. ;-) Jon.


Jim L's November 12 reply to Staci H's November 11, 2002 - Hi, To both you and Jon I give my best of luck. I tried the Atkin's diet a couple of month ago with no results. Reading his book one finds out that it won't be as effective as quickly with some of the usual meds us CHF people take. At least I didn't gain anything but real good eating for a couple of weeks. clocker131@charter.net


Eve, November 12, 2002 - Hi, I have DCM and my doctor prescribed Cardizem for me. I'd not heard of this before, I thought it was for angina. Does anyone else take it for DCM? Any help would be appreciated. At this point, my faith in this doc is a little shaken. If any of you could offer evidence to firm it up, good. If not, time to go hunting for a new doc, I guess. eguillot@vonderbarr.com


Jon's November 12 reply to Eve's November 12, 2002 - Hi Eve, Cardizem is a calcium channel blocker (see this page). If you take a calcium channel blocker with CHF, it should always be amlodipine if at all possible! See this article (let it load). Other CCBs may in fact harm CHFers with systolic dysfunction, although a few people might benefit. Jon.


Joe S' November 12 reply to Chuck's November 11, 2002 - Hi, I believe that viruses can be by taking a half glass of collodial silver twice a week. Joe S. jes@gbis.com


Tom, November 12, 2002 - Hello, I am an RN working for Vasomedical. We are sponsoring a heart failure study that is being conducted in over 25 locations across the USA. It involves using EECP or Enhanced External Counterpulsation, an FDA cleared medical treatment to treat patients with heart failure.
     Half the group is monitored under aggressive medical therapy while the other half gets a course of EECP also. To qualify, one needs an ejection fraction of 35% or less, ability to walk 3 minutes on a treadmill, and must have ischemic or dilated idiopathic cardiomyopathy.
     If anyone is interested in learning more, please contact me and I will be glad to give you more information and refer you to a study site. Best yet, it is all free to patients. Best regards, Tom. triedman@vasomedical.com


Jack's November 12 reply to Jon's November 11, 2002 - Hi, I did the Atkins' diet. Heck, most of my family did the Atkins' diet. They lost nice amounts of weight. Something in my metabolism didn't allow me to lose anything. I didn't even produce ketones (get those strips, Jon), so I gave up on the Atkins' diet.
     Then I developed type 2 diabetes and was instructed to try controlling it with diet so I went back to a pseudo-Atkins' diet. I just don't eat anything that has a significant amount of carbohydrates. To me, 12 grams is significant. So my major source of carbohydrates is the milk in my coffee. I still don't lose any weight but I have been able to drive my blood sugar down into normal (just like people who don't have diabetes) range. maddjak@hotmail.com


Jon's November 12 reply to Jack's November 12, 2002 - Hi Jack, We're picking up the test strips Saturday afternoon. I am also logging my experiences on the diet and will be making a web page about it for those who want to try it or consider trying it, so they can have the usual Jon straight-from-the-hip account to read. ;-)
     Everyone should know that I have been researching different eating systems for 3 months and have done it with the same thoroughness I bring to researching heart failure. Once my wife and I decided to try Atkins', we bought the latest edition of his book, and read it. I think Atkins' is too strict in some areas but I understand his theory and I mean to test his system. There is nothing inherently unhealthy or even slightly dangerous about it.
     We are naturally in phase one: induction. Our daily net carbohydrate intake is under 20 grams. Net carbs are total carbs minus fiber, which is not digested and thus does not convert to blood sugar. We are avoiding the high-glycemic-index foods through this phase even if they are low-carbohydrate. In other words, we are following the diet precisely and are even using "Atkins' Kitchen" products where possible. This way, if it does not help us, it won't be because we didn't do it right. :-)
     By the way, my wife was on a low-carb diet (not specifically Atkins') for awhile to control blood sugar and did very well on it, but fell off that wagon some years ago. Jon.


Mel G's November 12 reply to Jon's November 11, 2002 - Hi Jon, I would love to participate in a discussion about the low fat myth and the nutritional guidelines given to us all for the last 20 years. I am not a big fan of Dr. Atkins' diet, I think it's just slightly too severe. I have read a lot about high protein, low carb eating plans in the last 6 months, and think I have worked out what they're all getting at.
     I have always been fit and well, and after my pregnancies just a wee bit heavier around the middle than I was comfortable with, but nothing serious enough to make me change my eating habits. This common symptom of middle age in our western societies is known as Syndrome X when it gets past a certain point, and is in epidemic proportions. There is no question that despite 25 to 30 years of the eat-low-fat advice, the obesity problem is much worse than it ever has been, not because we're not following the guidelines, but because the guidelines don't work.
     One year ago, when diagnosed with DCM and CHF, and after 10 days of hospital diuretics, I came home weighing 134 lbs. I'm 5'6". Within 10 weeks of all those heart meds and almost no activity, my doctor weighed me at 156 lbs. We adjusted some meds slightly and I started thinking about my diet. I am a serious cook and was worried about changing the type and the way I prepare food for me and the family, especially with sodium and fluid restrictions in mind.
     After telling my PCP and my cardiologist what I had in mind, I started a low-carb way of life in July of this year, and the results have been just what I hoped. During the first 2 weeks I lost a lot of fluid, but felt good and didn't change any meds. I've kept up a high protein, low carb, low sodium, restricted fluid, moderate fat-intake diet and am feeling better than I have for years. I was more strict with my carb allowance in the first 6 weeks, but it really wasn't so terribly difficult. Changing my attitude to meat and dairy fats was liberating! A couple of hospital stays for ICD implant were difficult to keep at low-carb levels, but didn't affect my weight too much.
     I am happy with my weight now at 125 lbs., and have rounded out my diet with a reasonable amount of all food groups. My husband hasn't minded the change in our typical daily menu, and has had the bonus of going from 235 lbs at 6'1" in July to 198 lbs today without even trying. He is certainly a proponent of low-carb now. There is absolutely nothing about this way of eating that makes me feel deprived.
     In very broad terms, I cut out all "white" heavily processed food like sugar, bread, rice, pasta and potatos, and kept up a good protein (meat and fish) and green vegetable intake. Orange, red and yellow veggies, lots of nuts and quiet a bit of dairy are part of my plan too. There are lots and lots of low-carb recipe books and sites on the Net that can be adapted for low sodium.
     My kids don't mind the new meal plan, and still have a supply of bread, bagels, rice, pasta, chips, etc., to help keep their carbs up for high energy if they want. falmouth@bigpond.com


Jon's November 12 reply to Mel G's November 12, 2002 - Hi Mel and everyone: One note about hospital food. You are not in prison, guys! You have not contracted to eat hospital food while you are there. You will pay for it whether you eat it or not, but you don't have to eat it. You can eat whatever you want - just have someone you know bring it in for you. I am not kidding. I did this the last time I was in the hospital. It spooked some nurses but when they found that I could not be intimidated in the slightest and they had to "check into it," they discovered I was right and made no more fuss about my delivered-from-home meals. I did not surrender any food while they were doing their checking either! My CHF doc was amused. <g> Jon.


Karen K's November 12 reply to Gino's November 11, 2002 - Hi Gino, I'm having a problem locating either of the sites you referred to in your recent post, for downloading updated AHA guidelines. I'm fairly computer literate. If anyone could help me out I sure would appreciate it. Thanks, Karen. karenk@mchsi.com


Clara D's November 12 reply to Jim C's November 12, 2002 - Hi Jim, I too was diagnosed with idiopathic dilated cardiomyopathy about a year ago and have had an EF less than 15% ever since. I have had a LBBB for a number of years, which my current cardiologist thinks was caused by my cardiomyopathy. I also ask why I have no symptoms except occasional mild fatigue and have finally come to realize that no one has the answer. They simply don't know. I'm told not to worry about EF; that it's not as important as how you feel. I guess we should just be grateful that we've been granted the grace of a normal life and enjoy it while it lasts. ncdossetts@aol.com


Shelby H's November 12 reply to Joe S' November 12, 2002 - Hi, Colloidal Silver may or may not fight off virus, but it can and will turn your skin permanently blue if you take too much of it for too long. The condition is called argyria. See www.emedicine.com/derm/topic595.htm. For an article about a prominent person whose skin turned blue due to collidal silver, see www.cnn.com/2002/ALLPOLITICS/10/02/offbeat.blue.candidate/. Shelby. shelby@shelbyswedding.com


Donna's November 12 reply to Jon's November 12, 2002 - Hi Jon, I have heart failure with an EF of 35% and started Atkins' on July 21, 2002. Like yourself, I read the entire book and looked through and read the entire web site, and have had great success. My doctor was pleased with all my blood work after being on the program for 13 weeks. I am also a type 2 diabetic.
     Here is a link for a site called FitDay where you can add all your food for the day, set sodium goals, exercise goals, and more. I thought you might like it: www.fitday.com/WebFit/Index.html. I have been coming here for almost 3 years now and appreciate everything you do for us. May God Bless you in all you do. Donna in Florida. gramme@cfl.rr.com


Loretta D, November 13, 2002 - Hi, I have been on Atkins diet for 3 months and have lost 39 pounds. My sticks never turned pink, maybe from my meds). I look at it as eating normal, healthy food, leaving out the carbs except for low-carb vegtables. The biggest advantage is that eating low-carb totally curbs the carb craving. I eat about the same amount of meat and fat as I always have. I am feeling better with this kind of eating. Good luck to you newbies. lorettad7@comcast.net


Ruthie A's November 13 reply to Jack D's November 12, 2002 - Hiya Jack, I was glad to hear that someone else had trouble losing weight on the Atkins diet. I tried it too, and was rather strict about following the induction diet and so on. Like you, I never showed ketones on my test strips. I was so in hopes that the diet would work for me since I am a type 2 diabetic and could lose a pound or 2 or 3! No such luck. I lost maybe a pound or so in nearly a year of trying. I modified the Atkins diet a bit after the first 2 weeks but other than that, I stuck to a low-carb, high-protein meal plan.
     It was not until I started on insulin almost 3 months ago that the weight started coming off. I have not changed what I am eating, nor have I increased my exercise level, but I have lost nearly 30 pounds! So the assumption is that I needed the insulin to burn the food that I was taking in, no matter what it was. I am rather enjoying the liberties of eating whatever meat I want; even my dietician approves! So who knows why the diet didn't work for you? Everyone is different. Congratulations on having such normal blood sugar levels. That's great news! Ruthie A. rlaba51@yahoo.com


Jon's November 13 reply to Ruthie A's November 13, 2002 - Hi Ruthie, This is a general comment triggered by your post but not aimed at you. It's the fat to carb ratio that counts on Atkins. High protein intake is not as important as high fat intake on Atkins. The higher the fat and the lower the carbs, the better your chances.
     One thing that steams me about Atkins besides the sky-high sodium counts is the incredibly poor online support at their web site. Don't count on their support regardless how much they say they will provide it! Also, the latest edition of the book claimed to have an extensive carb gram counter but no such thing existed in the book when we bought it! Arrggghhh! Jon.


Peggy, November 13, 2002 - Hi, My husband had a quadruple bypass surgery in June after a very mild heart attack. After the surgery we were told he had little to no heart damage. The next few days after surgery he began coughing constantly and had trouble breathing. I know the doctors weren't concerned and the nurses, including the head nurse on the cardiac floor, were telling us that it was anxiety attacks.
     After 5 days they sent him home. The night before he came home he could not lie down and sat up all night trying to sleep with his head on his food tray. I had him home all the following day as he struggled to breathe, and I only knew what the doctors and nurses said, that it was anxiety. Finally, by evening I called an amublance and took him back.
     To make a long story short, he had congestive heart failure and had been sent home with it, without anyone ever telling us it was a possibility. I know he was battling it the day they sent him home. My question is, could those 2 to 3 days of awful struggling to breathe have caused heart damage?
     It is only 4 months post-surgery and he seems to be declining. His time on the treadmill seems more of a struggle and he seems to tire more easily. He also seems to have a hacky little cough. I don't notice any swelling or weight gain though. He is only 59 and very fit. He has never smoked, is not overweight, and eats very healthy. I am very scared and don't know what to think. Any comments would be appreciated. Thank you. clipper@tir.com


Jon's November 13 reply to Peggy's November 13, 2002 - Hi Peggy, Things are always more complex than they sonnd to us here online. However, this sounds like a very typical case of misdiagnosed CHF that continues to this day. You don't say if he is being treated for his CHF. He should be treated per the official guidelines. See them at www.chfpatients.com/faq/guidelines_99.htm.
     The "anxiety" comments are a dodge I have seen used over and over by doctors and nurses to cover their lack of understanding in a given situation. If they don't see anything physically wrong (and they are usually just missing it), they instantly claim it is just anxiety. That's a load of horse pucky and it really steams me.
     If your husband is not being treated for CHF per the guidelines, get him to another cardiologist - a CHF specialist. If he has not had an echo since his surgery, get him to that CHF specialist.
     The struggle to breathe is not unusual post-surgery but should have been a warning sign with the cough to every doctor there of possible heart failure onset. The doctors did not get it right and may not be getting it right now. Pack up that hubby and get him to a heart failure specialist, is my advice. Jon.


Amy, November 13, 2002 - Hi, I knew my husband came on this site and talked to y'all. I am sorry I haven't told you sooner. Lou Jones passed away on June 21st. His heart finally gave out. They said he had a massive heart attack, but I know that the congestive heart failure kicked in. I thought I'd let y'all know, Amy. the_menagerie@yahoo.com


Mike, November 13, 2002 - Hi, I finally got notification from SSD that my disability is approved (at the hearing level). I did it all, hired a lawyer from the start, called my Senator's office, and got good letters from my doctors. The hearing was a breeze and I started getting my benefits quickly. So to all of you who are in the process, please do it all, do everything, and good luck! msisbell@earthlink.net


Joe S' November 13 reply to Jack D's November 13, 2002 - Hi, I am convinced Dr. Atkins' diet made my CHF really get bad. My mentor told me I could eat all the bacon, cheese, and ham, and I almost died. I didn't know I had CHF at the time. Regarding calcium channel blockers, as soon as I started them, my blood pressure and blood sugars dropped. Joe S. jes@gbis.com


Jon's November 13 reply to Joe S' November 13, 2002 - Hi Joe, I don't know who your "mentor" was but listening to him is what almost got you killed, not the Atkins' diet. Jon.


Chelle C, November 13, 2002 - Hi, I am not exactly sure if I have hear failure. My doc has not said so yet, but they called me and told me my EF was 45%. If it has not improved by January 30, 2003 (they are doing another echo then), I will go on meds. I am 25 years old and I had a baby in May of this year.
     I want to be alive and watch all 3 of my kids grow up. I am trying to lose weight and eat better, but are there any other ways to improve EF other than prescribed meds? Are there any herbal remedies? is anyone else out there my age? Please reply. I am scared. Thank you, Chelle C. ashesofellehc@aol.com


Jon's November 13 reply to Chelle C's November 13, 2002 - Hi Chelle, I'll only address one course of action and hope others reply to the rest. :-) . I strongly suggest seeing a CHF specialist immediately. I see no reason to delay starting at least an ACE inhibitor right now, as long as you do not plan on getting pregnant again real soon. Jon.


Joyce, November 13, 2002 - Hi, I see a lot of posts on just about everything there is in regards to heart problems. The one thing I do not notice is people talking about chest pain and angina pain. My husband has this type of pain almost every day, along with being totally wiped out. If the pain gets too bad he does use a nitro patch but will not go to the ER because he said if he went every time he had chest pain, he would never get out of the hospital. I am assuming that chest pain goes along with all the other problems that come with CHF. jas48@webtv.net


Jon's November 13 reply to Joyce's November 13, 2002 - Hi Joyce, Angina usually occurs in CHFers with an ischemic cause for their heart failure like heart attack, blocked arteries (CAD), chronic tachycardia, etc,... A few non-ischemic CHFers get angina as well, but not many. Jon.


Jody H, November 13, 2002 - Hi everyone, I just have a question about flu shots. Is it necessary for us folk with DCM to get a flu shot? I've never had one before. Of course, I didn't know I had DCM until 6 months ago either. What is the general opinion? I've gotten 2 different answers from 2 different doctors. Thanks. jobraska@attbi.com


Craig B, November 13, 2002 - Hey Jon and everyone talking about the Atkins diet, I am just curious to know what you all think when you read something like http://208.133.254.45/search/display.asp?Id=425&caller=455. It's so hard to know what to believe, isn't it? Craig. bayce@optusnet.com.au


Jon's November 13 reply to Craig B's November 13, 2002 - Hi Craig, I am not into defending the Atkins plan because I believe it has some faults. However, I am as tired of the misleading and inaccurate information on Atkins as I am about things like CHFers' mortality. I quit reading the page you sent halfway through because I found it to be all over the map.
     Many of these sites - and I don't care how "good" their reputation is - have opinions stated as facts and lots of unproven supposition quoted as gospel. Never believe what is said online just because of its source! Triple-check it elsewhere - and yes, this means my information also!
     Some of the information at the url posted is good while other parts of it simply are not true. For instance, I am getting more fiber in the first phase of Atkins than I did in my "regular" diet. In fact, one warning in Atkins' book is that you may get constipated because of the increase in fiber in your diet. That forces me to believe that whoever wrote this article did not read Atkins' book.
     Please note that they are also wrong about long-term maintenance in the Atkins diet. Atkins' says that lifetime maintenance eating should be tailored to the individual. You raise your carb intake by 5 grams a week until you find the level that is best for you - regardless of what that level is! Here I am sounding like I am defending the diet when I haven't even proved to myself that it works yet! However, all the unresearched comments about Atkins are irritating.
     Everyone who is interested in this diet should take several steps: read the actual Atkins' book; read trial results about various diets; read about how the human body uses food to produce energy from sources who do not address different diet plans - only the physiologic processes involved; read lots of editorials from sources that admit their bias upfront so you can more accurately weight the information as you read it. This drastically reduces confusion.
     Please also note that the same diets pushed by AHA and other organizations of "good" repute - namely, low-fat, reduced-calorie diets - have not been proven safe in long-term trials anymore than low-carb diets!
     This article claims that a low-carb diet can lead to skeletal muscle breakdown. First, skeletal muscles break down normally and are rebuilt every single day; a calorie reduction as well as a carbohydrate reduction leads to more muscle "loss" than usual. However, trial results show that low-carb diets lead to less muscle breakdown and loss than the highly praised low-fat, reduced-calorie diets!
     One reason I have so many links on this site leading to other sites - and why I offer my own personal health-related bookmarks for free download - is that I think everyone should read, read, read. Use multiple sources and consider what type of resources to read first.
     The American Medical Journal this year reported a trial that showed a low-carb (ketosis-inducing) diet to be safe and effective and it even improved cholesterol profiles! Conservative authorites like Dr. Meir Stampfer, Professor in the Departments of Epidemiology and Nutrition, Chair of the Department of Epidemiology at the Harvard School of Public Health, are pushing for changes to the holy food pyramid - to include less refined grains (carbs) and more fats (fat). He says that the current guidelines promote "overconsumption of carbohydrates." I could go on and on but it would take me days to list all that I read.
     I am going to start vetting all urls on diet before allowing them to be posted for awhile, so I don't get suckered into long explanations like this one every day. If you want an opinion on any given page about diet or if you want specific questions or concerns about Atkins answered, e-mail me instead, please. (No fault on your part whatsoever, Craig! :-)) Of course, when my page about my experience on it goes up later, that will answer most of the questions and concerns. Jon.


Patty, November 13, 2002 - Hi, I had a heart attack in 1998 and am very glad to still be here. I started reading this forum shortly after I got out of the hospital. I haven't looked you up for a long time so it took me awhile to find you. Having read this site for the first time so long ago, I just wanted you to know that I think it is even better now. You do a fabulous job. Now that I found you again, you are bookmarked. patricia.eller@sbcglobal.com


Shelby H's November 13 reply to Chelle C's November 13, 2002 - Hi Chelle, Many doctors are afraid to use the term "heart failure," I think especially around younger patients. Heart failure simply means that your heart is not pumping as efficiently as it should be. If your EF is 45% you probably have it. As Jon said, go to a Heart Failure Specialist, not just a general cardiologist. I don't see any reason to wait on the medication. If you just had a baby you could have PPCM.
     Don't worry too much. Forty-five percent is pretty good around here. Many of us like myself are in the teens (my EF is 18%) and still up and kicking. Eating right is important and the most important thing is restricting intake of sodium! You will need a low sodium diet, not just a low-fat diet, which is what most people consider a heart healthy diet. There are some alternate remedies available and Jon also has some good information here on that, but it's important to get a proper diagnosis and the right medicines on board before anything else. Read The Manual. You're not the only young person here, I'm only 29. :-) Shelby. shelbyscout@hotmail.com


Mike, November 13, 2002 - Hi, I am wandering if anyone knows if the regular cocktail of CHF meds might have an effect on having kids for males. A few docs I talked with said no but if there are problems in women, like Jon said, you would think there some with men as well. Thanks. mikehull007@yahoo.com
 
Jon's note: Uh, where did I say that about heart failure meds?


Natalie K's November 14 reply to Amy's November 13, 2002 - Hi, I am so sorry you lost your dear husband. You were obviously a caring and involved mate, so there must be many happy memories to comfort you; remember that while you have suffered a great loss, you have not lost not a single one of those precious remembrances. mcnat45@yahoo.com


Amelia's November 14 reply to Jon's November 12, 2002 - Hi Jon, I have heard of others on the Atkins' diet who have lost weight and doctors who disaprove, but you will always have pros and cons. I have tried several programs without luck until someone told me about the Suzanne Somers book, "Eat Great, Lose Weight." With cheating off and on, I have lost 25 lbs in 6 months, which isn't a lot since I was off and on.
     The first 20 lbs was lost in 3 months and have not gained an ounce back in 10 months. Others have lost a great deal in a short time by staying on Suzanne's program. She believes in eating a variety of foods in "digestive-appropriate" combinations, a way of eating, not dieting. Mainly, it is no sugars, white starches, no bananas (too starchy), no carrots, no beets (too much sugar); eat fruits alone on an empty stomach, carbs like whole grains and wheat with proteins, eat proteins with fats with veggies. Basically, you do not mix fat with carbs.
     It's really great because you can eat all you want till comfortable, with butter, oil, cheese, eggs, mayonaisse, poultry, fish and meat. This does not cause cholesterol. I eat as many as 6 eggs weekly in butter or olive oil, more sausage, red meats, and bacon than I have had in 25 years. My cholesterol was 278 and in a few months went down to 238 without meds.
     The book is wonderful and explains why you lose weight. It has wonderful recipes that are easy and simple to prepare using lots of veggies, fruits and proteins. It is very balanced eating and has no caffeine or junk foods. I was wearing size 16 jeans in January and now am in sizes 10 to 12. I still cheat with chocolate sweets and pizza occasionally. I hope you get a chance to read this book, it's very interesting. Suzanne has a web site at www.SuzanneSomers.com. Best to all. amelias@erols.com


Jon's November 14 reply to Amelia's November 14, 2002 - Hi Amelia, How do you limit sodium eating sausage and bacon? I know about low-sodium bacon. Is there a low-sodium sausage out there? If so, please post the brand and name cause I want some! <g> Jon.


Myrtle C's November 14 reply to Chelle C's November 13, 2002 - Hi Chelle, Do not be too fearful. There are many things you can do. Your youth can be an asset to coping with CHF, if you have it. Read all of The Manual and everything else on this site Jon has put together. He knows more then most cardiologists, no kidding. Hang tough and let the Lord comfort you. omie@axs4u.net


Myrtle C's November 14 reply to Joyce's November 13, 2002 - Hi, I have had chest pain (angina) whenever I do much of anything that stresses me physically or emotionally. I lived with that long before I developed CHF, it started soon after a heart attack. It persisted and nitroglycerin did not help. It would last for hours when I would do more than I should and I would hit the wall, so to speak. I would get it while cooking a meal. The only thing the CHF has helped is that I no longer do so much to get pain for such long periods.
     It sounds as if your husband has some fear and needs to discuss this with his doctor. If nitro helped me, I would have been using that patch for certain. I wonder why he doesn't use it immediately. Do you have any ideas? You have my sympathy in trying to help a man who sounds a bit stubborn. Bless you! omie@axs4u.net


Myrtle C's November 14 reply to Jody H's November 13, 2002 - Hi Jody, Yes! Unless you have an allergy to eggs. Influenza can affect anyone with serious consequences. It kills people and the others wish they were dead. Even if you are healthy, you don't want the flu. It can take 2 weeks to get the full effect from the vacination, but usually you get some benefit within a week, so get thee to a clinic or doctor. It doesn't make you sick, the worst could be a sore arm for a few hours. Just keep your arm moving and massage it for half an hour after you get the shot. Don't believe those who say, "I got the flu from the shot". That's not supposed to happen because it is made of dead viruses. omie@axs4u.net


Myrtle C, November 14, 2002 - Hi, This is a reminder to get the pneumonia vaccine if you are over 65. Check with your doctor about getting this vaccine if you have CHF. I am told that the "over 65s" will not need another shot, but those under 65 may need another one within 5 years. I don't know the reasoning behind this. If I got it when I was younger and had health problems, I would think it wise to get it also. As always, check with your doctor, but if you get 2 different opinions as Jody did, who do you believe? omie@axs4u.net


Tom S' November 14 reply to Jon's November 13, 2002 - Hi, TMI sometimes can lead us all astray when we are trying to self diagnose and associate a specific set of symtoms with a single causative agent. I believe that is true with angina because of the widespread belief of an association with chest and radiating arm pain with heart attack. Almost since the onset of my CHF symptoms, I have had some form of chest pains, burning sensations and radiating pains down my left arm but have pretty well come to learn they are not necessarily associated with heart difficulties. Some of the pains can be directly attributed to my heart condition but most seem to be associated with poor posture or position during sleep periods or when I am sitting in my office chair or couch.
     At one point I really thought I had angina and my CHF doctor looked at me and point blank told me that it was impossible to have angina without blockages, of which I have none. I never like words that are absolutes because there are lots of areas the medical profession has had to retreat from once an overwhelming amount of evidence has been presented by folks such as us to the contrary.
     I believe that any organ that is in distress sends out warnings in the form of pain and I believe that is just as true of the heart as it would be of a lowly gallbladder. Anybody who has ever suffered from a balky gallbladder knows full well that it can double you over with pain and be difficult to diagnose. bigheart@muchomail.com
 
Jon's note: TMI?


Joe S, November 14, 2002 - Hi, I cut down on my diuretic yesterday and I didn't get bloated, but my breathing was sure labored last night. Hey, I thought this stopped sometime. It's been over 8 months since my valve job. Everything else seems okay. Any ideas? Joe S. jes@gbis.com


Jack D's November 14 reply to Mike's November 13, 2002 - Hi Mike, According to studies at the University of Nimoid, PA., the use of heart medications reduces the incidence of male pregnancy by over 95%. maddjak@hotmail.com


Tom S' November 14 reply to Jon's November 14, 2002 - Hi, TMI means Too Much Information. Sorry I forgot to add that line. By that, I mean that most information concerning heart attack or conditions is usually preceeded with radiating, or left arm and chest pains. There seems to be a glut of that type of info these days. bigheart@muchomail.com


Jody H's November 14 reply to Myrtle C's November 14, 2002 - Hi, Thank you Myrtle for your advice on flu shots. I made an appointment for tommorow. Obviously it can't hurt. It just makes me feel sad I guess, I never had to worry about things like that. It is sometimes just very difficult to accept that anything is wrong.
     I am also just wondering from anyone else's experience what it means when an echo done 6 months after the first one comes back with "worse" results. My first EF measurement was not ever officially given to me. The tech read it at 47, the cardiologist told me that was too generous a number. This echo puts my EF at 38%. My heart has enlarged more too. I don't have the exact numbers yet, but I go to see my doc next week.
     So far the only med he has put me on is 5mg of Lisinopril. I know that you guys are not medical docs, I know that you cannot advise me medically on what my problem is. I do know however that a lot of you have very good knowledge and experience of, and with, heart failure. This site is awesome and very encouraging! Jon, I'm glad that you used your gifts to serve the Lord in this way.
     Just curious Jon, you said that you have tinnitus. So do I, it just started about a year ago. It's been checked by a specialist and he said that it was probably a viral infection that damaged some nerves. I and the doc just have it in one ear and he said his came from a virus also. Does this sound familiar with yours too? Thanks for any information. Jobraska@attbi.com
 
Jon's note: I've had tinnitus in both ears as long as I can remember. It got worse after getting CHF but has stabilized in the past couple of years, I reckon.


Steve Bauer, November 14, 2002 - Hi folks, All of us have our little obsessions but since I am recovering from a stroke as well as living with a-fib and CHF, I'm particularly obsessed with food. The main lasting effect of my stroke is a paralyzed vocal cord that affects swallowing and voice. Swallowing the wrong way is risky; I aspirated twice and had 2 bouts of pneumonia. So most of my nutrition is through a G-tube.
     Anyway, here's another tidbit or "food for thought": Scripps Howard News Service reported on yet another study, this one about drugs and herbs interacting. Dr. Brian Foster with Health Canada reported that many common spices have a dampening effect on key human enzymes that process pharmaceuticals in the body. People on long-term drug therapy or taking multiple drugs should keep that in mind, he said.
     My question is whether nutritionists and cardiologists, including CHF specialists, even think about these things. Mostly I just hear the warnings about caffeine (bad for arrhythmia) and salt (bad for CHF). shbauer@prairienet.org


Richard M, November 14, 2002 - Hi, Three years ago I was at 425 lbs and started a Jenny Craig diet. I stayed on it for 4 months and started my own cooking for one quarter the price of their food and went down to 265 lbs. The formula was very simple: eat a well balanced diet and cut down on calories. Now, doing it is the hard part. It is not easy I know. I look at it this way: I will be on a diet all my life so it is not that hard to lose when its only a few pounds. Whatever you try, I think it still comes down to cutting calories. Good luck to all who are dieting. malczewski@attbi.com


Natalie K's November 14 reply to Jon's November 14, 2002 - Hey Jon, Meanwhile, can I have the name of the bacon? <g> mcnat45@yahoo.com
 
Jon's note: I buy the local house brand - in my case, Hy-Vee brand


Myrtle C's November 14 reply to Jack D's November 14, 2002 - Hi, Are you certain it isn't a higher percentage? <g> omie@axs4u.net


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.

Talk to Jon Site Index