The paperwork never ends The Archives
April 16 - 31, 2004 Archive Index CHFpatients.com

Jon 4-16     had fun at chat last night
 
James P 4-16     seek CHF doc in northwestern Arkansas
 
Jack D's 4-16 reply to Roger's 4-15     carbs in diet with diabetes
 
Vicki J's 4-16 reply to Andy P's 4-9     trouble with cough and sleeping
 
Ian 4-16     seek ICD experiences & more
 
Jacky 4-16     in England for awhile
 
Pat Y's 4-17 reply to Vicki J's 4-16     special bed helps me breathe
 
Roger Harmon's 4-17 reply to Jack D's 4-16     clarifying my eating plan
 
Jack D's 4-17 reply to Roger Harmon's 4-17     bread, cereal, and carbs
 
Tom S 4-17     reducing spam frustration
 
Donna V 4-19     to night time coughers
 
Denny 4-19     web site about supplement doses
 
John S 4-19     seek experiences with reduced feelings in hands
 
James' 4-19 reply to Tom S' 4-10     cutting down on spam
 
Gul 4-19     how do I prepare for a MUGA?
 
Gary 4-19     want to share this update
 
John 4-19     seeking advice - what is wrong with me?
 
Catherine L 4-20     why does altitude make my chest hurt?
 
Jon 4-20     enjoyed the chat last night
 
Molly 4-20     no cash or insurance, what do I do?
 
Jon's 4-20 reply to Molly's 4-20     I hope others also reply
 
Tom Campbell 4-20     why the shortness of breath?
 
Jon's 4-20 reply to Tom Campbell's 4-20     my experience
 
Chuck's 4-20 reply to John's 4-19     weight, beta-blockers, exercise experience
 
Roger's 4-20 reply to Denny's 4-19     my experience
 
Ruthie A's 4-20 reply to Molly's 4-20     getting help obtaining meds
 
Louise D's 4-20 reply to Molly's 4-20     also appeal that Disability denial
 
Louise D 4-20     EF and hospital food questions
 
Jon's 4-20 reply to Louise D's 4-20     EF is not everything
 
Linda Bloom 4-21     Coumadin, weight, strokes & more
 
Valerie R 4-21     SSD questions and more
 
Myrtle C's 4-21 reply to Dennis' 4-19     welcome to the board
 
Valerie R's 4-21 reply to Louise D's 4-20     hospitals and low sodium food
 
Ian J 4-21     first post, questions
 
James' 4-21 reply to Tom Campbell's 4-20     sodium intake and shortness of breath
 
Myrtle C 4-21     beta-blockers & depression - questions
 
Jon's 4-21 reply to Myrtle C's 4-21     beta-blockers & depression
 
Tom 4-21     will I get SSD?
 
Jon's 4-21 reply to Tom's 4-21     I just don't know
 
Louise D's 4-21 reply to Valerie R's 4-21     SSA benefits calculation
 
Dierdre 4-21     can someone clarify this?
 
Sue E 4-22     good news using prednisone
 
Roger's 4-22 reply to Valerie R's 4-21     hospital inpatient meals
 
Brenda I 4-22     what should I ask my new doc?
 
Paula 4-22     what is flash CHF?
 
Jon's 4-22 reply to Paula's 4-22     CHF
 
Jon 4-22     don't forget chats
 
Lilly 4-22     intro, diet, Splenda
 
Myrtle C's 4-22 reply to Jon's 4-21     will do
 
Jack D's 4-22 reply to Roger's 4-22     hospital meals are often wrong
 
Jon 4-23     if you have an ICD, read this
 
Sandra S 4-23     trouble eating low sodium & more
 
Cary Deen's 4-23 reply to John S' 4-19     pain & problems in the feet
 
Roger's 4-23 reply to Paula's 4-22     take care of yourself
 
Jon 4-24     sorry for site disruptions
 
Susie O 4-24     pain, numbness, tingling & more
 
Jack D's 4-24 reply to Lilly's 4-22     Splenda seems okay to me
 
Sandra S 4-24     EF is up, why don't I feel better?
 
Jon's 4-24 reply to Sandra S' 4-24     hang in there
 
Pat H 4-26     saw CHF doc, EF comments
 
Deirdre 4-26     seeking replies to previous post
 
Roberta F 4-26     intro, chat times
 
Yvette's 4-26 reply to Gul's 4-19     my MUGA experience
 
Roger's 4-26 reply to Lilly's 4-22     I use Splenda all the time
 
Tom Campbell 4-26     seek CRT (biventricular pacemaker) experiences
 
Jon 4-27     chat info
 
Joanne E 4-27     why a sleep study for me?
 
Louise D 4-27     what should I do - diabetes and meds?
 
Greg's 4-27 reply to Tom Campbell's 4-26     CRT pacemaker experience
 
Walter K 4-27     Emory-Dreyfuss Muscular Dystrophy
 
Barb N's 4-27 reply to Louise D's 4-27     diuretics and blood sugar
 
Ottye's 4-27 reply to Jon's 4-27     now looking forward, not back
 
James' 4-28 reply to Roberta F's 4-26     doctors, diet and more
 
James' 4-28 reply to Tom Campbell's 4-26     biventricular pacemaker experience
 
Jon 4-28     chat room tip & searching tip
 
Ruthie A's 4-28 reply to Louise D's 4-27     managing diabetes & heart failure
 
Lori K 4-28     cough, mucous, fluid build-up questions
 
Scott Brown 4-28     questions for Jon
 
Elizabeth K's 4-28 reply to Louise D's 4-27     diabetes and heart failure
 
Jon's 4-28 reply to Scott Brown's 4-28     how I am doing
 
James' 4-29 reply to Lori K's 4-28     foods can affect you & more
 
Jim R's 4-29 reply to Tom Campbell's 4-26     biventricular pacemaker experience
 
Michele 4-29     seek pseudoaneurysm experiences
 
Jesse 4-29     my father died, and more
 
Roger's 4-29 reply to Ruthie A's 4-28     sugars and sodium
 


Jon, April 16, 2004 - Hi everyone, I had fun at the chat last night. I hope more people make it to Monday's chat. See www.chfpatients.com/chat.htm for times. If anyone wants to suggest a different chat time, just post it and reasons why it might be better than the current times so it can be discussed. Jon.


James P, April 16, 2004 - Hi, I am interested in finding a good CHF specialist in my area. I live in northwestern Arkansas, the Bentonville-Rogers-Fayettville area, and only 6 miles from Missouri. I would appreciate it if anyone can help me find a specialist in this general area. Thanks! jawphk@cox-internet.com


Jack D's April 16 reply to Roger's April 15, 2004 - Hi Roger, Now you've really got me confused. I have diabetes too and I watch carbs, so things like oatmeal, fruit, normal bread made with any kind of bread flour and also baby formula would never be on the menu because they are all very high in carbs.
     I make things like cake from wheat bran, flax seed and Splenda. It only gives something like 4 carbs per 4 ounce serving because of all the fiber. If I ate the stuff you describe I would probably have to take insulin because my blood sugar would be too high. As it is - without any type of meds - my blood sugar stays within the range of people without diabetes and has done so for almost 2 years. maddjak@hotmail.com


Vicki J's April 16 reply to Andy P's April 9, 2004 - Hi Andy, I'm having the same problem. I don't cough during the day, only at night. I live in Tennessee and the pollen count is horrible here. I don't feel like I'm holding fluid but my PCP gave me some cough syrup with codeine in it. The cough syrup and sleeping in a recliner a few days really seemed to help me. Vicki J. vj6464@aol.com
 
Jon's note: Also, see www.chfpatients.com/faq/pillows.htm.


Ian, April 16, 2004 - Hi everyone, I'm from England and I wish we had a site like this over here! My questions are for anyone out there with an ICD. I was diagnosed with dilated cardiomyopathy almost 2 years ago. I'm 49 and still able to work. Seven months ago I had an ICD implanted because of a couple of tachycardia events. It didn't go off for 6 months and now the thing has gone off 3 times in 10 days. I'm on the usual ACE inhibitors and beta-blockers and now amiodarone (Cordarone), an anti-arrhythmia drug.
     What I'd like to know is how reliable are ICDs and how often does everyone else's go off? I know this will vary from person to person but I'm trying to get some ideas of what I can expect - and how much to worry! Love to everyone. Lleweli@aol.com


Jacky, April 16, 2004 - Hi Jon, A quick hello from England where I will be for the next 2 weeks having already been here for two. Lots of walking but am being careful to rest in between. I seem to feel better with no housework! I am looking forward to the chat room when I get back. Take care. Jacky. jackymwb@earthlink.net
 
Jon's note: If you have an Internet connection and pooter with browser available, you can participate in the chats regardless of your physical location.


Pat Y's April 17 reply to Vicki J's April 16, 2004 - Hi, Several years ago I purchased a bed where I can raise the head and/or feet. It is great. When my allergies act up I really put the head up. I always keep the head up just a little. I have had CHf and an ICD for nine and a half years. I figured I would need such a bed sometime in the future. I didn't know how much it would help during allergy seasons. I found mine in a non-name brand store. Through haggling I got almost a third reduction in price. On the second trip I talked directly with the owner and bypassed the jerky salesman. Anyone who e-mails - please mention Jon in the subject line. I hit the delete button for my spam mail most of the time. PTYoumans@aol.com


Roger Harmon's April 17 reply to Jack D's April 16, 2004 - Hi, The formula has only 10 carbs and that is for 5 oz. When I do eat oatmeal at 27 carbs, I only use 2 oz of formula. Once in awhile I measure this out just to make sure I don't go over too much in either department. Like I said, I make my own bread (one slice a day) from the cook book, with a few modifications, but one mg sodium and 19 grams carbs.
     I try to eat in moderation. I do a lot of slaw, with a dressing of 2/3 cup vinegarand 1/3 cup water and 1/3 cup Splenda. Fish for the most part is low sodium and low carb. My burger is ground turkey. I haven't had any beef for better than a month now. I know everybody is different and the modified eating that I do works for me - along with exercise. I hope this explains a little better. rkharmony@highstream.net
 
Jon's note: If you live outside the USA, you may be able to get liquid Splenda, which I think actually has zero carbs!


Jack D's April 17 reply to Roger Harmon's April 17, 2004 - Hi, I try to keep below 27 grams of carbs a day. Some days it's more but many days it's less. I couldn't deal with your bread because it's basically the same as regular bread in carbs. I eat 2 different kinds of bread. One has 5 grams carbs and the other has 7. That way I can actually eat a hamburger! For cereal I use the same mix as I do for cake: Wheat bran and flax seed with butter, whipping cream and Splenda. maddjak@hotmail.com


Tom S, April 17, 2004 - Hi, From the "Why didn't I think of that?" file comes an idea whose simplicity might just defeat spammers. Pat Y suggested it in her post and if we all did it when replying to a particular individual by e-mail, it might save some time and the grief of having to open so many disgusting and dangerous e-mails just hoping it is legit. If we all either put "Jon" or "CHF Forum" in the subject line, I think that would go a long way in defeating the spammers cluttering up our inboxes so badly that we can't tell who's who. Thanks Pat, for the idea. bigheart@muchomail.com


Donna V, April 19, 2004 - Hi, I've noticed several people talking about the night cough and one mentioned pearls that look like vitimin E. Those are Tessalon Pearls, or Benzonatate 100mg. Before diagnosis when all was considered to be allergy, they were prescribed to me because I'd get a dry cough (I took no drugs at all at the time) at night but I had a really thick, ropey drainage that's now gone. Now when I feel that dry tickle at night I swallow a pearl and can sleep. It merely deadens the throat and there's no more unproductive cough. I do not need to take one every night now but when I start the cough before I sleep, I do. I have the prescription but it was not originally written for CHF. My CHF was undiagnosed at the time. dmvditty@aol.com


Denny, April 19, 2004 - Hi, I have been lurking at this site since 1998, when I got my computer. I have never posted before but found a site that indicates recommended dosages for various supplements used for congestive heart failure. I thought this information was so important that I should post the Url. There is citing of many research projects from which dosage recommendations were compiled. I hope this information will benefit those confused about supplement dosages. The Url is www.wellnessreview.com/reports/cardiomyopathy. DMoen58@Hotmail.com


John S, April 19, 2004 - Hello, I experienced CHF in 1996 at 45 years of age. In 1999 I started experiencing declining touch sensitivity accompanied by numbness and tingling in my fingers and parts of my hands. I am very active and had exceptional dexterity. Now I cannot button a shirt. I went to a hand specialist who found nothing addressable by his specialty, even following a neurological exam. A year later I went to an orthopedist. His associate then did a neurological exam with no significant findings. The first then tried carpal tunnel surgery on my left hand with no results.
     Prior experience with amiodarone (Cordarone) when in and out of a-fib with stains in cornea preventing laser surgery, led me to insist it be discontinued. My EF is 70% and I am my cardiologist's poster boy. I have a-fib but so do millions who don't even know it.
     I am concerned that the loss of sensation in my hands is caused by Coumadin (warfarin) or another med. I find only one reference specifically to this on the Net. Does anyone have any similar experiences or pointers in the right direction? Best regards, John. pda@fractionalplates.com


James' April 19 reply to Tom S' April 10, 2004 - Hi Tom, There are a number of anti-spam tactics you can put in place to save yourself this hassle. The first one is to utilize a service that does spam filtering. For example, I use Spamcop and an address only costs something like 5 or 10 bucks a year. Yahoo's freemail system has spam filtering as well.
     Second to that, you can consider using spam add-on software such as SpamAssassin. These tools are really good at ferreting out spam. In short, there's no need to keep changing e-mail accounts - just put a little protection in place and you'll see that spammy mailbox taper down quickly. :-)
     By the way, I receive and review well over 1000 messages a day and use filters to help me get through it all. I'm on a few dozen discussion groups (maybe 40 or so) and I also run my own mail server to boot. With all these things, I typically see less than 10 pieces of spam a day and most days I see none at all since all my accounts use spam protection (SpamCop, SpamAssasin, various DNSBLs, etc.). James. jnj@spamcop.net


Gul, April 19, 2004 - Hi, I am going to have a MUGA test in May. I read the description. Does anyone have any suggestions on how to prepare for it? Thanks. gulmk@comcast.net


Gary, April 19, 2004 - Hi all, This is the first time posting for myself. I went to my CHF cardio doc on the 16th of this month with some bad news. I had a left heart cath done on April 7th to open a 99% blockage in a vein. While they did the left side they also decided to do the right again. Well, I found out this past Friday that the cath showed increased pressures between the heart and lung so now the doctor wants to repeat the cath and check again, and if they are still high, he wants to implant an LVAD.
     He said when the pulmonary pressures are high like this, a patient would no longer be considered for heart transplant. Well, my doctor thinks the LVAD will reduce the pressure and keep me a candidate for transplant. I am pretty nervous about the LVAD implant, having to go through an operation again. I had my first heart attack at age 32. I am now 49 years old and have had 11 heart attacks and 2 bypass surgeries. I am in class 4 CHF have been on a transplant list, but had marital problems. I am now going to the U of M through the heart transplant program there. I just wanted to share a few things with everyone. Thanks, Gary. gskin31501@sbcglobal.net


John, April 19, 2004 - Hi, Maybe someone has a similar experience. I had mitral valve surgery and the maze procedure 2 years ago. Last year they implanted an ICD/pacemaker due to atrial tachycardia and ventricular tachycardia. I take Coumadin, lisinopril, amiodarone, and lipitor. My problem is that as soon as I do any kind of exertion - from holding a shovel to walking up the slightest grade - I have instant fatigue and muscle weakness.
     I have lived an extremely active life and try to walk a mile a day in two segments on flat ground. I experience dizziness, nausea, and shortness of breath. My last echo showed an EF of 45%. It was 10 to 15% prior to the operation. Since they replaced the valve my physical activity has decreased.
     I have very positive attitude and have tried to play racquetball but I couldn't breathe and had to be helped from the court. I switched to tennis and was told by the cardiologist to stop. They do not seem to know what is wrong with me. Some say nothing is wrong with me and others say severe CHF. Is there some advice available? Thanks, John. johndavidw@sbcglobal.net


Catherine L, April 20, 2004 - Hi, Recently I was on vacation in Hawaii. We decided to drive from sea level up an extinct volcano. At about 2000 feet I began to feel a hurting feeling in the center of my chest. As we ascended, I felt intermittent pain in the center of my chest, between the breasts, where the sternum is. At 8500 feet we decided to descend. I was really disappointed.
     I have mild idiopathic cardiomyopathy (weak left ventricle) but with meds my EF is 55%. Of course, I will see my cardiologist about this but I wonder for now if anyone knows what was going on. Was it angina due to the low oxygen levels? Thanks, Catherine. gardengirl47@kc.rr.com


Jon, April 20, 2004 - Hi everyone, I enjoyed the chat last night, and just wanted to thank those who showed up. I tend to get tired after the first hour, but I leave the chat room open for those who want to keep going. Last night I added a set of controls for fonts and such so if you come to a chat, check out the buttons at the bottom of the chat room. Jon.


Molly, April 20, 2004 - Hi, I was diagnosed with CHF after my first surgery to untether my spinal cord when I was 12 years old. Now I am age 22 and was in the hospital last year for CHF. I had a valve replacement at age 16 and was taken off CHF meds, digoxin and Lasix. I have applied for Social Security benefits and was denied so now I am getting no medical care because I have no insurance and no money.
     After my hospitalization last summer I was put on digoxin and Lasix once again. I haven't been able to afford them at all because I can't work. Does anyone know how that would affect my CHF or tetralogy of fallot? I get to feeling like I can't get enough air, especially at night. I am almost afraid to go to sleep. I just can't afford to go to the emergency room. I already owe over 20 thousand as it is. Am I totally screwing myself or do you think I'd be okay? Any replies would be so greatly appreciated. gothicgeekfreak@yahoo.com


Jon's April 20 reply to Molly's April 20, 2004 - Hi Molly, There are drug assistance programs of many flavors linked through www.chfpatients.com/links.htm#rx. Your description of your symptoms are those of classic acute heart failure. You should be on an ACE inhibitor immediately or you are headed for trouble and a lot more hospital and medical bills. You also need that Lasix. Please check into those financial assistance programs immediately. Also, call previous doctors you have seen and ask them for some samples to get you by. You may need to use your county hospital - the one in your area that is geared toward people without health insurance. They will work with you much more easily than other medical centers. Jon.


Tom Campbell, April 20, 2004 - Hi, I have SOB constantly in varying degrees along with fatigue and abdominal discomfort. Yet I have no lung congestion or ankle swelling. I have cut out putting salt on food but have made no other dietary sodium modification. Every time a medic checks my lungs, they are clear. Does that mean my SOB is entirely caused by medicines (Coreg, Accupril, Imdur, diuretics)? I have dilated cardiomyopathy with an EF of 20% and an ICD. tomcam333@comcast.net


Jon's April 20 reply to Tom Campbell's April 20, 2004 - Hi Tom, Welcome to the funky world of heart failure! My ankles have never swollen since one time in 1994. I have not had rales since then either.
     I often had abdominal discomfort through my years with CHF. Mine was usually from the lining of my stomach retaining fluid instead of my ankles. See www.chfpatients.com/faq/edema.htm. This usually requires an injection of diuretic since pills are not well absorbed through swollen stomach lining. Abdominal discomfort can also come from a weird form of angioedema in that area, caused by ACE inhibitor use. See www.chfpatients.com/ace.htm#visceral_angiodema. Also, SOB can result from an enlarged liver - one that is itself retaining fluid, which is very common in CHFers.
     You must reduce your daily sodium intake to less than 2000mg daily and that always means much more effort than just eliminating the salt shaker. If you don't do this, you will continue to retain fluid and be constantly short of breath. See www.chfpatients.com/rec/sodium.htm and www.chfpatients.com/rec/recipes.htm.
     Your meds are highly unlikely to be the cause of your shortness of breath unless you have seriously low blood pressure. One exception is that beta-blockers can aggravate already existing asthma. You definitely need to be seen by a heart failure specialist. He would be aware of all these possibilities Jon.


Chuck's April 20 reply to John's April 19, 2004 - Hi, I believe that my story is similar to yours and might provide additional insight. In December of 1999 I was operated on to eliminate some congenital artery mixups and repair my leaky mitral valve. I was 62 years old and seriously overweight. I was very limited after surgery. After several months of limited exercise (phase one cardiac rehab) I entered the more formal phase 2 for 12 weeks, 3 times a week, for about an hour each session under doctor and heart tech supervision. This is paid for by many insurances.
     Following this program I felt wonderful but a subsequent echocardiogram confirmed that my EF was only 30% as previously estimated by my surgeon. I was put on a beta-blocker (Zabeta) at relatively low dosage for 1-1/2 years until my EF climbed to 60%. Unfortunately, my weight also increased, perhaps because of a reduction in metabolism from the Zabeta. I hoped this weight problem would reverse by being off the Zabeta but it has not and I now weigh 260 lbs at 5'7" - up 40 pounds.
     I continue to exercise on phase 3 and have now added machine muscle stress actions. I seem to be getting control. However. I mentioned losing my breath quickly to my cardiologist and he sent me to a pulmonologist and then a sleep specialist. He diagnosed sleep apnea and I now wear a pressurized face mask during sleep. It appears to be significantly helping my short term loss of breath problem. The doctor says that failure to sleep properly reduces the level of oxygen stored throughout the body, eliminating the reserve used for exercise bursts. There was no evidence of this problem in any of my heart rehab exercises. I hope this helps you. It surprises me that you are not on any of the beta-blockers that I have heard of. cadams4160@aol.com


Roger's April 20 reply to Denny's April 19, 2004 - Hi, Thanks for that interesting post. The funny thing is that most of the things listed, my new cardiologist put me on. The one I had right after the surgery got me on Coreg and Cozaar and said if I had any problems to let him know, then and dropped me off at the curb, with no check-ups, no nothing!
     About 2-1/2 years later, I got with the new doctor and I did 35 one hour sessions of EECP. You can check this out on the web site www.EECP.com for more info. I didn't have angina but these treatments did help me and the best part is that insurance covered all but $7 and some cents. rkharmony@highstream.net


Ruthie A's April 20 reply to Molly's April 20, 2004 - Hi Molly, I sure understand the predicament you are in. I have been there - unemployed, homeless, no insurance, and with CHF. It can be very scary.
     What saved me was a combination of services. First, my cardiologist's office had a nurse who coordinated with the pharmaceutical companies that provided free medications for patients with no income and no insurance. Check with your doctor to see if they provide that service or check with your county hospital as Jon mentioned to see if something like that is available to you. It really helps if you have one person coordinating it all since there is a lot of paper work and since you have several medications that need to be overseen at one time.
     The other service was a free clinic. My county does not have such services but one of our local churches provides a free clinic as one of their ministries to the community. Check with your local Social Services office to see about free clinics available to you. While you are there, ask (if you haven't already) to apply for food stamps and other assistance. You must have a good diet, low in sodium and high in fruits and vegetables, to help you stay healthy.
     Jon is right, Molly. You have to get on the appropriate medications and stay on them to keep your medical costs down. You can spend one day in the hospital and run a bill equivalent to a month or 6 weeks of medications. Do the math and see which is really cheaper.
     Being poor and sick is not fun, nor is it easy to cope with, but it's where you are right now and it's nothing to be ashamed of. Swallow your pride and ask for help everywhere you go. It's out there somewhere but no one is going to help you unless you seek them out. It's tough and it's humiliating but if you don't, you could get into a life-threatening situation. That would really mess up your day! ;-)
     Don't be afraid to post here and vent, ask questions, or whatever. There's always support and understanding here. But you need to take action to care for yourself. You are the only one who can. Ruthie A. rlaba51@yahoo.com


Louise D's April 20 reply to Molly's April 20, 2004 - Hi Molly, Jon and Ruthie gave you some valuable info. I would just add that you should appeal your SSA Disability claim if you haven't already, and keep appealing. I'm in federal court with my claim and I'm doing it Pro Se (myself). You can use any new doctor visits as new medical evidence that may help your case. I'm sorry you're in this situation but I'm so glad to know I'm not alone. Good luck. louport35@yahoo.com


Louise D, April 20, 2004 - Hi, I'm in class 3 CHF. I get so tired, I sometimes have to stop in the middle of brushing my teeth. I was recently in the hospital and they did an echo. Supposedly, my EF is 42% and it did not pick up any of the quivering or fast, funny beating of my heart. They also said my lungs were clear but I have a productive cough and almost everything I do causes SOB. I thought a 42% EF was good, so why do I feel so terrible? At what EF would I not be so easily fatigued?
     Also, the only thing they restricted with the food they gave me was salt. Although they know I also have high blood pressure and angina, they gave me regular tea and coffee with every meal. I stopped drinking them months ago because I was told the caffeine could be responsible for my heart palpitations. So why would they give me this in a hospital? Thank you. louport35@yahoo.com


Jon's April 20 reply to Louise D's April 20, 2004 - Hi Louise, There is almost always an over-emphasis on EF. This is only part of the heart failure picture and heart failure specialists are only now realizing this - many of them are having problems truly "getting" this.
     Heart failure affects muscle fiber type, gas transfer in the lungs, hormone levels of many kinds, the lining of blood vessels called the endothelium (which performs many critical bodily functions), the ability of skeletal muscle to use the oxygen it gets, the ability of the heart to properly fill with blood, and much more. EF is just one part of the picture.
     Keep in mind also that fitness level, being overweight, not eating right (did you eat the stuff they gave you? <g> ), not sleeping enough or well enough, and more have a huge impact on your symptoms.
     This is why we need heart failure specialists and why we have to stick with the overall program as laid out in The Manual. It ain't easy and sometimes our body refuses to cooperate, but it is best to stick with the program and not worry so much about EF. My own CHF specialist says that in his mind it is a true fact that how a CHFer feels is a better indicator of how he will do than what the EF is. Hang in there, Jon.


Linda Bloom, April 21, 2004 - Hi, I just found and read a post about Coumadin and weight. I appreciated the description of the way the body absorbs Coumadin. Many doctors have told me it is impossible for Coumadin to cause a weight gain. The knowledge I have gained reading posts makes sense to me. None of the doctors convinced me that it is impossible. If I have learned anything from my medical history, I have learned that anything is possible.
     The same doctor told me to go home from the emergency room after they did not give me triage for 6 hours and all of my TIAs were gone. "Go home," the neurologist says, "You just have coffee nerves or an unspecified migraine." Well, of course a 40 year old healthy woman could not have a stroke. By 7:00 AM the following morning, my entire left side was paralyzed. The doctor kept telling me it is just a fluke. A fluke is just something that did not happen to him.
     I had such a bad cough for 3 months that I tore a hole in my right carotid artery. It started to heal and my coughing broke the clot loose. Fortunately for me, I have no cognitive damage. I was adamant about not staying in a wheelchair. After 17 days in the hospital and one month in Kessler Institute for rehabilitation, I came home.
     For over 30 years I was very slim, a size 8 at 5' 7" tall. In the years to follow I gained 100 lbs. I am not much of an eater so since my normal body type is slim, the new weight is not acceptable. The only constant has been Coumadin so I believe that has been my demon. Recently, I have been diagnosed with 3 different clotting disorders so I have to live on Coumadin for the rest of my life.
     Does anyone out there have any ideas what I can do to help myself? I am no longer paralyzed but after 4 years of work I now have gone back on disability. I do not have the endurance to perform the functions of my job. Also, does anyone on earth know of a medical group that can work with me physically, emotionally and physiologically? Thank you for your consideration. LindaBloom@aol.com
 
Jon's note: Ximelagatran should be approved soon - maybe that will work better than warfarin for you.


Valerie R, April 21, 2004 - Hi, I seem to go between 10% and 15 to 20% depending on whether I'm at the cardiologist's or the heart transplant team's doc. By the way, the good news is that I'm on the inactive list. Anyway, I'm doing very well. Quitting work was a good idea for me too. After 35 years of teaching 8th grade, I was afraid I'd be bored but I'm not. Also, I can cook and make bread now and it helps a great deal! I do the treadmill for 30 minutes each day and am active in shopping, etc. The Manual is wonderful!
     My question is: How much of a difference is there between SSD and the regular, early SSA bevefits that I will be eligible for next year? I know SSD is more but how much more, and will it stop when I reach the age to be able to get SSA? Valerie R. vgrogers@aol.com
 
Jon's note: I don't know dollar amounts but when you start taking "retirement" SSA benefits, they replace your SSD.


Myrtle C's April 21 reply to Dennis' April 19, 2004 - Welcome to the board, Dennis. About time you gave us some good links to get info from. You take care and God is with you, my friend. Myrtle.omieof3@yahoo.com


Valerie R's April 21 reply to Louise D's April 20, 2004 - Hi, The second time I was in the hospital for CHF and IDCM they gave me things like ham sandwiches with mayo and packaged dressings for salad. It's scary how little people know. Lately, I've been hearing of doctors who say 3000mg and 4000mg per day is fine. That's not even fine for healthy people! It's no wonder the low-sodium market is almost nonexistent! They can't even get it right at a hospital! vgrogers@aol.com


Ian J, April 21, 2004 - Hi, This is my first post here. I seem to be the opposite of Louise. After 3 stable happy years, my EF has fallen steadily over 12 months from 45% to 35% and at same time my left ventricle has increased from normal (5 to 5.5cm) to 6.5cm. I am not sure what precisely is being measured. Is that very large? However, I have no symptoms of heart failure and the cardiologist says I haven't got it. I guess she means that I am class one.
     All this was caused by a heart attack at age 48 in early 2000 resulting in VT. I had an ICD implanted 4 years ago. It has never paced or shocked me.
     I have taken the usual meds for the past 4 years - coversil, sotalol, Zocor. Blood tests, blood pressure, pulse, weight, physical exam, and treadmill stress test results are all still excellent - better than most normal 52 year olds. I have a healthy diet without restricting salt. I exercise a lot including yoga, plenty of golf, and fast walking (5mph on a treadmill for 30 minutes daily at a 7 degree slope with no problem, just very sweaty. My pulse climbs from 50 resting to 140 to 150 beats per minute. My cardiologist and EP doc are happy with that.
     After the last bad echo, the doc put me on Aldactone (spironolactone), which she said could help control heart size, though it's usually prescibed as a diuretic. The only other instruction was maximum 2 standard drinks per day. I loved wine but am now selling my cellar.
     The cardiologist said that if my heart enlargement continued at the next 6 month echo she would consider changing meds - adding Coreg but that this would mean switching from sotalol to amiodarone to control the VT. I don't like the prospects of amiodarone (Cordarone) side effects.
     The cardiologist tells me I worry too much about echo results, that lack of symptoms and how I feel are more important. She also says I will be a good candidate for left ventricle reshaping/reduction surgery if and when heart failure develops. I'm still frantic with worry about the trend in my echos and how long it will be till heart failure symptoms kick in. I feel for those of you with serious symptoms. Any similar experiences or comments appreciated. supentian@yahoo.com
 
Jon's note: That 6.5cm measures your left ventricular internal dimension when it is full of blood. Normal ranges up to 5.6cm. Six cm and up is considered definitely enlarged. Mine is still 6cm. For more on heart reduction surgery, see www.chfpatients.com/saver.htm, www.chfpatients.com/downloads/mannequin_1.pdf , and www.chfpatients.com/downloads/mannequin_2.pdf.


James' April 21 reply to Tom Campbell's April 20, 2004 - Hi Tom, Going on a low sodium diet means a lot more than just cutting out table salt. Table salt only accounts for a fraction of the sodium the average Joe takes in. The current US RDA of sodium for healthy people is 2,400mg and there is a movement to reduce that to 1500mg. The Academy of Sciences has found that our bodies actually only require about 500mg each day. That said, some reports claim that the average American eats between 8,000mg and 18,000mg every day. This number is very difficult to wrap one's mind around but I can vouch for the studies through my own experiences. My average day ranged between 5,000mg and 8,000mg. In fact, some meals were 5,000mg all by themselves!
     The vast majority of your sodium is "hidden" in the foods you eat. All foodstuffs have some measure of sodium, even fresh fruits and vegetables. It may be a trace or it may be a whole bunch. The key is to examine everything before you eat it, clean out the cupboards of the high stuff, and learn to cook. Just about anything in a box, can, jar or other package is going to be off the list. This includes some so called low-sodium foods. If it's processed then you probably shouldn't eat it.
     Look for "No Salt Added" foods such as canned vegetables and tomatoes, unsalted sweet-cream butter and so forth. Pay close attention to the labels on everything you buy and watch the servings. In general, the food industry apparently bases serving sizes on how much a mouse would eat.
     Watch out for meats because some have a solution injected for added flavor and preservation. This solution is typically 10% or more sodium. It's frequently added to pork and chicken, plus some beef products. You can usually buy fresh, uninjected meats at your local butcher and some of the larger supermarket chains. One of ours even puts a nutrition label on packaged meats.
     Try to focus on freshly prepared meals. You can also prepare meals and freeze or refrigerate them so a 5-minute meal is just a microwave away. To judge how much sodium is in fresh foods (which typically do not have a label) you can use the USDA's Nutrient Laboratory Database at www.nal.usda.gov/fnic/foodcomp/index.html - it's an essential part of my meal preparation.
     You need to shoot for no more than 2000mg per day of sodium and about 2 liters of fluids each day. Note that I said fluids, not water. Soda, juice, coffee and so forth all count here. After awhile on a true low-sodium diet, you should start to see improvement in your shortness of breath. Like you, I have CHF, an enlarged heart, and a CRT pacer. I had near constant shortness of breath as well until I dropped my daily sodium intake down to under 2000mg each day. Over the few weeks immediately following, my SOB gradually went away. I now only experience it when I've either eaten a very large meal or consumed a significant amount of fluids over the 2 liter per day limit.
     This will be a bit of a hassle at first, I know, but the payoff is well worth the hassle. jnj@spamcop.net


Myrtle C, April 21, 2004 - Hi, I am frustrated about the interaction of drugs I need. I have been on antidepressants for years, and had found that Celexa and Elavil were the best for me. Norvasc caused depression, Coreg at 6.25mg gave me less problem with SOB and fatigue. When the dose was raised to 9mg I became profoundly depressed and on my own have stepped back down to the 6.25mg Coreg. The depression remains, plus a "brain fog" that keeps me from concentration.
     I have not been able to get my cardiologist on phone but I really don't have any confidence that he could help me. I am upset that he didn't warn me about raising the Coreg, since the Norvasc caused this problem. Does anyone have any ideas about how long to stay on this dose of Coreg or if I should just go off it and see what happens?
     I have been so looking forward to special parties for my granddaughter starting this weekend that I feel so unprepared for this just now. I know it is never a good,... omieof3@yahoo.com


Jon's April 21 reply to Myrtle C's April 21, 2004 - Hi Myrtle, I agree: Beta-blockers are known to worsen depression, so he really should have been watching for this.
     If you want to stop Coreg, I strongly suggest telling your cardiologist that you are going to stop it and that you want him to monitor and support you while you do so. Your heart rate and blood pressure need to be monitored carefully because going off a beta-blocker can make them radically rise for a period of time - this could send you into acute CHF if it is a hard enough rebound, thus the need for monitoring and doctor support.
     Personally, I would stay at the current dose for at least 2 weeks if possible, then cut it in half for 2 more weeks, then stop. If you can't go that long, tell your doctor so and decide how to go about it. Jon.


Tom, April 21, 2004 - Hi Jon, I applied for Social Security in the middle of December of 2003 and have not heard anything yet. They lost my papers for around 2 months and located them in early March, 2004. I have non-ischemic cardiomyopathy with an ejection fraction in the 20% range. I am also morbidly obese, which along with scar tissue from past cancer surgeries, prohibits me from gastric bypass. I haven't work since July of 2003. Social Security has requested more medical records from the hospital as well as from my internal medicine doctor. What do you think my chances are of getting approval? I am so tired and washed out from the low EF and all the heart meds. Thomashnc1@aol.com


Jon's April 21 reply to Tom's April 21, 2004 - Hi Tom, I honestly don't know. I have found SSA to be entirely unpredictable, sadly enough, in what they consider disabled from one day to the next, and from one region to the next. If your heart is also considerably enlarged, I would think your chances are pretty good, although they may say you just need to lose weight in the next year to drastically improve your condition. I just don't know. Jon.


Louise D's April 21 reply to Valerie R's April 21, 2004 - Hi Valerie, The SSA offers a benefit statement which shows the amount of benefits you would get currently. I think you have to call or go online and request it though. However, they also have a calculator on their web site that you can use to estimate your current and future benefit amounts under the disability and the retirement programs. The direct link for it is www.socialsecurity.gov/planners/. I hope this helps answer your question. louport35@yahoo.com


Dierdre, April 21, 2004 - Hi, I recently underwent a MUGA scan to assess my current ventricular function. The test revealed a grossly dilated left ventricle with severe global hypokinesia, and my LVEF was 15%. The right ventricle appeared normal in size with preserved RVEF at 48%. I believe I understand this, but would appreciate if someone could explain this to me in layman's terms.
     I also underwent an electrophysiology study and the results indicated I was not a candidate for a pacemaker or defibrillator or biventricular pacing. The test revealed normal cardiac conduction with no evidence of needed biventricular pacing.
     After being evaluated at Columbia Presbyterian Hospital for a heart transplant, I was not accepted due to fairly preserved functional capacity. My doctor has said he has never seen someone respond so well to medication. Any feedback would be greatly appreciated. Thank you and I appreciate all the help your web site gives to me. skipd1025@aol.com


Sue E, April 22, 2004 - Hi, I am a 63 year old woman who was diagnosed with CHF about 11 or 12 years ago. At age 33 I had a heart attack, thus bypass surgery (2 bypasses). After about 6 months, angina returned and of course continued.
     In 1993 I had bypass surgery a second time, with 3 bypasses this time. I had no pain for 2 years this time, then it returned. I had been on nitroglycerin patches and of course nitroglyerin pills, along with all the usual heart meds. In the meantime I also developed gout.
     Last summer I had a heart cath and the dye shut my kidneys down. I was taken off my gout med. After being in the hospital 5 days with 2 dialysis treatments, my kidneys recovered and seem to be doing okay. In October, the doctor believed I was about to have a flare-up of gout and prescribed prednisone. After being on this for about 2 weeks, I woke up one morning feeling like a new person. I could breath better than I had in many, many years and I felt absolutely wonderful. It was like a miracle. This has continued. I have not had chest pain and have not had to use nitro patches or pills. I can walk distances that I couldn't before without chest pain.
     I still take all my meds like I'm supposed to, but I feel like a whole new person. My whole outlook on life has changed. I know I still have CHF and in January had an ICD implanted but it's unbelievable the way things have changed for me. I talked with my doctor about this Monday during a regular checkup and she thinks there may have been a chronic lung problem that we had overlooked and the steroid cleared it up.
     I don't know how long this will last but I'm sure enjoying it while it does. I don't use my handicapped placard anymore and make it a point to park in the lower parking lot when I go shopping. I just wanted to share some good news with you and everyone. I'd appreciate any prayers also. Thanks Jon, for being here for all of us. Sue E. sueseng60@aol.com


Roger's April 22 reply to Valerie E's April 21, 2004 - Hi, You are so right that hospitals don't have a clue how to fix a low sodium meal! One time I was in for bronchitis and I told them very-low or no-sodium and I was brought scalloped potatoes and a slab of ham! Of course I refused the meal. I told them I was there to get well, not to be planted. rkharmony@highstream.net


Brenda I, April 22, 2004 - Hi, I have been going through this heart thing since about 2001 without any relief. I had a thallium stress test in 2002 which resulted in: 1) negative for ischemia and scarring, with normal wall motion and an EF of 54%; 2) thickened and redundant mitral valve but no stenosis and minimal mitral regurgitation, minimal tricuspid regurgitation, thickened and calcified aortic valve but no stenosis, normal atrial sizes, normal left and right ventricular function; 3) holter monitor revealed occasional PVCs with associated symptoms of angina.
     I have changed heart doctors and will see him the 30th of this month. I am not pleased with what the doc tells me and with what the Net indicates. I was told I didn't have to take aspirin or take an antibotic before dental surgery. I was given a beta-blocker and was told that I only have to take it when my palpitations are bad; that what I have is nothing but a nusiance and that was all, that nothing could be done and it was not doing any damage.
     Well, the beta-blocker only worked for about 5 hours a day then it all started up again. For the past month, my chest has had a constant pain in it and I know it's my heart but the palpitations are not strong, just the pain. I don't want to rush to the emergency room. My symptoms are the same as described on this web site without the swelling in the feet and hands.
     When I go to the new doctor, what are questions I should ask, and do you know if there really is anything that can be done to help me. I am only age 45. Thank you. Brenda Irving. brendairving@yahoo.com


Paula, April 22, 2004 - Hi, I am a 54 year old woman from Alabama with CHF. I was found to have this problem in August of 2003. I spent 9 days in CCU and have undergone every test known to man. When I got to the emergency room, I stopped breathing but my heart did not stop beating. After all the tests, I was found to have weakness on the left side of my heart. I was started on medication and have been doing fine since.
     I was very obese when this happened 335 lbs. I have since lost 80 lbs and have 50 more to lose. I am here because God has a purpose for my life. I feel truly blessed that my life was spared. Sometimes I feel afraid when I think back on what happened to me, but I keep telling myself that God is in control. I am not going anywhere until it is my time.
     I only eat 2000mg of sodium a day and consume only 64oz of fluids. The doctor said I was doing everything humanly possible to control my CHF. I am just afraid it will happen again. The doctor also said when I lose all the weight I need to lose that I would not have CHF anymore but would always have to watch my sodium intake. On my chart at the hospital it said I had flash CHF. Can you tell me what this means? Thanks for listening, Paula. DOC@coosahs.net


Jon's April 22 reply to Paula's April 22, 2004 - Hi Paula, I think what he means is that you had flash pulmonary edema, which is very fast onset fluid in the lungs. It's very dangerous. Once you have CHF, you will always be a stage 3 heart failure patient even if you never have symptoms again.
     I would get a copy of my medical records from the hospital immediately and write down my test results, then research them to find out what they mean. At that point, if you even think you may have concerns about your heart or lungs, a talk with your doctor is in order. Jon.


Jon, April 22, 2004 - Hi everyone, Don't forget that there is a chat session every Monday and Thursday evening. I may not stay as long as I have been, but if I leave I will make sure the chat room is open and can be used until everyone has had enough. ;-) Jon.


Lilly, April 22, 2004 - Hi everyone, I am age 68 and was diagnosed with cardiomyopathy in 1998 and have found great comfort in this great and informative site - thank you. My EF is low (25% up from 15%) but I feel great most of the time. I am still working and enjoying life; I hate the alternative! Sometimes I overdo the yard work and must go down with a good book!
     However, I watch my diet very carefully, absolutely no artificial anything. My specialist is amazed at my energy and is even beginning to listen to me when I preach diet to her. <g> It gets real boring at times. I saw the word Splenda in some of the messages and freaked. Please look up research by medical people about it. I found lots of scary stuff. I am especially concerned about the effect Splenda might have on the immune system since we already abuse it by taking a zillion meds every day.
     Now for the good news: The sun is shining! lleonardis@comcast.net


Myrtle C's April 22 reply to Jon's April 21, 2004 - Thanks Jon, will do. Myrtle. omieof3@yahoo.com


Jack D's April 22 reply to Roger's April 22, 2004 - Hi, The last time I was in the hospital they gave me the cardiac/diabetic menu and I couldn't order anything different because I was in that ward. Now part of this was okay because it was the no-sodium/low-sodium plan but those morons don't know anything about diabetes. Every condiment was non-fat imitation garbage made with sugar and starch fillers. I couldn't even order tuna because all their tuna came prepackaged mixed with imitation mayonnaise. The menu was loaded with breads, pastas, cereals, fruits and potatoes. So for 3 days I ate eggs, hamburger patties and chintzy salad with lemon juice and mustard for dressing. maddjak@hotmail.com
 
Jon's note: Yet many hospital cafeterias serve amazing variety and you can fit most diets to it - go figure! Last time I was in the hospital, I had my wife bring me my meals from home. They can't force you to eat hospital food - it ain't a prison.


Jon, April 23, 2004 - Hi everyone, Here is a quick bulletin for anyone with an older Medtronic ICD implant:

April 19, 2004 - Medtronic says that some older ICDs may not charge properly, so they might not work properly when needed. There has been one injury and 4 deaths relate to this. The ICDs in question were implanted in 1997 and 1998, and are close to their normal replacement time. About 1,800 may still be in use.
     The affected models are the Micro Jewel II Model 7223Cx and GEM DR Model 7271 ICDs. These specific ICDs may take too long to charge near the end of battery life and could cause a delay in shock therapy or could even cause unnecessary shocks.

I'm sorry I left the chat room after only 35 minutes last night but I had an appointment to keep. Just like last night, any time I leave "early" I will leave the chat room open for everyone to use until they are done. Jon.


Sandra S, April 23, 2004 - Hello, I am age 45 and have lived with CHF for 3 years. I feel pretty good most of the time. It has changed my life and I can no longer work. This forum has helped me so much. I am having a hard time staying on a low-sodium diet. I feel that sometimes I don't take care of myself like I should. I guess I just want to be normal. sherrill@blueridge.net


Cary Deen's April 23 reply to John S' April 19, 2004 - Hi, I have posted before using the name Tom S. I see there is another Tom S posting so I have decided to use my username so there is no confusion.
     Getting to the point, I posted a week or so ago regarding numbness in my feet. I was thinking I had peripheral neuropathy. I went to my doctor and he didn't have a clue as to what was causing this condition. My glucose level was good (80). He prescribed Neurontin at 300mg taken 3 times per day. He said this would take away the burning sensation in my feet. I told him I didn't have pain or a burning sensation in my feet. He told me to try it and see what happens. I just started taking it today and it is too early to see any results. The numbness is still present.
     I began researching my condition and found that my condition could be caused by oxygen deprivation. My EF is 30 to 35%. I was diagnosed with CHF back in July of 2003. I have located a CHF specialist in my area thanks to Jon's listings. I plan on seeing him next week. You may want to go to www.emedicine.com/med/topic/568.htm. The site will explain some possible causes for numbness in hands and feet, etc. I hope this helps. Take care. cdeen10@bellsouth.net


Roger's April 23 reply to Paula's April 22, 2004 - Hi Paula, God is in control! It sounds like you are doing very well now. Keep it up! Diabetes is like CHF - once you've got it you always have it, but you can be in control. My PCP and cardiologist are amazed at how well I take care of myself. I tell them, "This is my body and nobody else can or will take care of it for me." rkharmony@highstream.net


Jon, April 24, 2004 - Hi everyone, I am sorry for site disruptions the past 2 days. Some hacker has been trying to shut our site down by overloading us with script-driven junk e-mail by the tens of thousands. I am doing what I can to stop this threat but I can only do so much. Please bear with me. More posts later - I am tired from trying to get this all working again. Jon.


Susie O, April 24, 2004 - Hi, I have had migraines all my life but in the past few months they have gone from the pain and nausea to prior to that, having tingling in my face and left arm. The neurologist said that was atypical migraines but recently I have had tingling and sometimes numbness that goes from my head to my feet. I describe the tingling as a low volt of electricity going through me and when walking there will be a feeling sometimes that my foot kind of slides but it doesn't really. I was wondering if anyone here has encountered this. I had an MRI Wednesday but it was scheduled because the doctor kind of got upset and said, "What do you want me to do?" That made me mad and that brought on the tears. Thanks Jon, for letting me vent. I hope you and your family are feeling well this spring. texlady1@hotmail.com


Jack D's April 24 reply to Lilly's April 22, 2004 - Hi Lilly, I've checked beaucoup web sites about Splenda trying to locate a source of uncut stuff and I found a lot of places damning it with much vehemance. After your post I decided to delve even deeper. I couldn't find even one credible source of these ridiculous claims. Anecdotes from individuals with overactive imaginations start rumors of the Virgin Mary appearing in Jello Pudding cups. These same overactive imaginations lay the blame on Splenda for every ailment they can think of. It just ain't so. maddjak@hotmail.com


Sandra S, April 24, 2004 - Hi, I just posted for the first time a few days ago. My doctor told me that my EF is very good at this point. I feel like my doctor thinks I should feel a lot better than I do. I still get very tired during the day. I take a high dose of Lasix. He took me off some of my meds. I still take 6.25mg Coreg twice a day. I thought once you have CHF, you always have it. Does anyone have this problem? sherrill@blueridge.net


Jon's April 24 reply to Sandra S' April 24, 2004 - Hi Sandra, I know just how you feel. My last echo in September of 2003 showed my EF at 50% (I thought it read 60% until I got fresh copies of my medical records a few days ago). Still, it took me from then until the middle of this month to get my Demadex dose down to 10mg (equal to 40mg Lasix) like my CHF doc wants me to do. Every attempt before that left me with a swollen face and gut.
     I just don't feel nearly as good as one might think, considering my EF has climbed from a low of 13% to 50% now. I am starting to reduce my Coreg and Monopril dose but will not stop either one, just maintain at a lower dose to eliminate any meds-induced fatigue. My heart is still enlarged. In fact, it is larger now than when my EF was in the 30s.
     I think one reason I am able to start reducing diuretic is all the exercise and weight loss I have managed. For those who are able in any way to do so, I strongly suggest some resistance training in addition to walking. It has certainly improved my quality of life, even though some days, motivating to lift those dumbbells is the hardest thing I do all day. <g>
     My doctor noted in my medical record that "Jon is improving more slowly than his heart." I think that sort of says it all. At least I'm not getting worse these days, and I make a point to appreciate that!
     The thing to remember is that we can get better, and we can feel better as well. Stick with the program and patiently look for improvement. Jon.


Pat H, April 26, 2004 - Hi, I recently switched to a CHF specialist. In our 2 hour conversation (my original cardiologist gave me no info) I guess he noticed that I was really worried about my 13% EF. He told me he has seen some people with low EFs who do much better than some people with EFs of 40%, and that I should not dwell on EF. If he was trying to make me feel better, it worked for about 30 seconds. mondays_child_1@yahoo.com


Deirdre, April 26, 2004 - Hi, I am looking for a response to my 4/21 post. I hope someone has some imput. Thanks. skipd1025@aol.com


Roberta F, April 26, 2004 - Hello everyone, This is my first post. First, let me say thanks to Jon for a truly wonderful site! I feel blessed to have stumbled my way here. I was officially diagnosed with CHF in 2000. I've been on an emotional roller coaster ever since.
     This week I seem to be having some moments of greater clarity, realizing that I have to be more proactive in taking care of myself. After reading The Manual, I should probably fire my PCP because he hasn't referred me to a cardiologist. I've been on atenolol, furosemide, lisinopril, and K-tab for years. Although I've been complaining to my doc all this time about my extreme fatigue, not once has he taken the time to explain some of the basic CHF realities. Aarrggghhh!
     He referred me for an echo 2 years ago and in February this year for follow-up. Next up is a sleep study next month. I already went for the first consult and the cardiologist was surprised that my doctor never brought in a sleep study until now. I guess now I know why I've been struggling to get through 8 hours of work during the week. I run out of steam about 10:30 in the morning or so.
     About the chats, I'd sure like to participate but I'm in the eastern time zone (Atlanta area) and about ready to crash and burn for the night when the chats start. I may try to make one soon when I have more energy. Again, thanks to Jon for all the information on this site. notinksnemr1@aol.com


Yvette's April 26 reply to Gul's April 19, 2004 - Hi, I recently had a MUGA. They put a line in and I was injected with a receptor and was asked to wait about 30 minutes at which time I was then injected with a dye. The receptor transports the dye so that the blood flow could be viewed by the machine. The first time I had a MUGA it was still in a testing phase in my area about 6 years ago and they simply did it as they would do an echo. This time however, I was lying on a table that gave me more the feel of an open MRI. The camera started recording from the right side and every few minutes it would move about 2 inches. It took about an hour and that was probably because they had trouble getting a reading on the left side and I started coughing because I was not used to lying flat for such a long time. Other than the tiny injection, which I did not feel, there was no pain. finch32219@yahoo.com


Roger's April 26 reply to Lilly's April 19, 2004 - Hi, I always check things out before I use them and I have been using Splenda for a long time now. I use it for all my cooking and baking, and have had no ill effects from it. I went from buying the small box to the bag now. I use it to bake my bread all the time and it has no different taste or anything. rkharmony@highstream.net


Tom Campbell, April 26, 2004 - Hi, On Thursday I'm seeing the electrophysiologist/cardiologist who implanted my ICD about the possibility of cardiac resynchronization therapy (CRT). I'd appreciate hearing from anyone with experience or other information about this. Thanks. tomcam333@comcast.net


Jon, April 27, 2004 - Hi everyone, I am sorry I didn't get the chat room open last night. I had one of those afternoons and evenings where it took everything I had just to lie on the couch, and I just plain forgot. I feel sort of stupid and quite badly about that. However, I will be opening the chat room later today and leaving it open for people to use whenever they want. As long as it doesn't get abused, I'll be leaving it open all the time.
     I am also considering making both chats one hour earlier in the day. If anyone has any comments or suggestions about that, please let me know! Jon.


Joanne E, April 27, 2004 - Hi, My doc has referred me to a sleep specialist but I'm wondering if I really need one. My DH tells me I only snore a little, sometimes. What other symptoms would encourage him to make this referral? I've been reading this site for almost 6 years and I thank God and Jon for it every day! JavaJo90@aol.com
 
Jon's note: He may just be covering all the bases, which is not a bad idea, considering the large percentage of CHFers with some kind of disturbed sleep patterns.


Louise D, April 27, 2004 - Hi, For diabetics with CHF especially, what should I do? I took 20mg of Lasix yesterday afternoon for the first time in about 5 days because I had much more difficulty walking. My lower limbs are swollen and I assumed the fluid had made its way to my lungs. On April 12 and 13th when I was in the hospital, they gave me lots of Lasix plus a prescription on discharge for quadruple the 20mg dose I had been taking. The problem is that I went to the ER then because of eye pain, nausea, vomiting, dizziness, headaches and chest pain. I had these same symptoms but a lot worse, the week of April 22.
     I had a doctor's appointment then and I told this new doctor about all these symptoms. I told her that now everything - even high fiber foods - were making me sick. I assumed my diabetes was getting worse but I didn't know why. Since I told her about my eyes burning, I assumed she would check my eyes. She didn't. Other than asking when and by whom I was diagnosed with diabetes, she ignored the subject completely. When I told her that the oranges and bananas that I was eating as a potassium source were making me sick too, she asked me who told me I needed potassium?
     I went to the library 2 days later and I was searching everything including the Internet, to tell me why I had eye pain. I could barely read. I looked in a medical reference book under diabetes. There, as an example of the meds that raise blood sugar levels, was diuretics. I'm not sure what kind of doctor this woman is but shouldn't she have known this? I don't know what kind of doctors I saw in the hospital either but this started with them. Shouldn't they have known to give me oral meds for the diabetes if nothing else?
     I don't want to take insulin and I'm just on diet and exercise. I can barely walk enough now to control my blood sugar from the increase I get from the beta-blocker (metoprolol 50mg). I know they raise blood sugar but I didn't know about the diuretics. Shouldn't the doctors have told me?
     I have another appointment in 2 weeks with the doctor; should I go? What should I do about the Lasix? louport35@yahoo.com


Greg's April 27 reply to Tom Campbell's April 26, 2004 - Hi To, In July of 2003 my cardiologist implanted a 3-lead CRT unit and it works. I won't say that it helps cure everything, only God can do that, but as I said, in my case it was a good decision on my cardiologist's part to implant that type of device. Greg. computerman2@adelphia.net


Walter K, April 27, 2004 - Hi, I apologize for the length of this post but I think it may be of value to some CHFers. I have noticed over the years that a number of people posting here have mentioned they have peripheral neuropathy as well as CHF. I am one of them but have just learned "it ain't necessarily so."
     My son, in his mid-40s, has just been diagnosed as having the autosomal variation of emery-dreyfuss muscular dystrophy. This is extremely rare, maybe 1 in 100,000 for men and 1 in a million for women and is therefore frequently diagnosed as something else (often as a neuropathy). Emery-dreyfuss almost always leads to serious cardiac problems such as CHF and a-fib. My son's last EKG just barely shows the beginning of a-fib.
     My son told his doctor about me and the doc asked to see me (at no charge!). He diagnosed me as not having a neuropathy but as having a variation of the muscular dystrophy my son has! This doctor is a well-regarded specialist in rare muscular diseases so I have to respect his opinion. If he is right, I have been misdiagnosed for over 20 years.
     I searched Jon's Archives and found one other post in June of 2002 from a woman CHFer who said she had been diagnosed with emery-dreyfuss after 15 years of misdiagnosis. Although emery-dreyfuss is very rare in the general population, it should be a lot more common amongst CHFers since it almost always leads to cardiomyopathies.
     I don't think there is a similar relationship between peripheral neuropathy and cardiac problems, so if you have been diagnosed with both it may be worthwhile to take another look, although there is no cure anyway. However, emery-dreyfuss is definitely an inheritable condition (about 50% of the time) and since it frequently leads to CHF it may be one answer to the question of the inheritability of CHF. CHF itself may or may not be inheritable directly, but this condition that leads to it is.
     The practical result of all this is that if a CHFer also has "peripheral neuropathy" it may well really be emery-dreyfuss and inheritable. In this case they should have their children watched for both cardiac and muscle problems as they grow up. Emery-dreyfuss can strike at a young age.
     I am really not trying to scare anyone, but all this is new to me and I thought I would pass it on to our "group." whknoth@yahoo.com


Barb N's April 27 reply to Louise D's April 27, 2004 - Hi Louise, Welcome to the complex world of juggling meds. Lasix is a loop diuretic and does not raise blood sugar. Thiazide diuretics do raise blood sugar, as do beta-blockers. In my experience Coreg does this more than atenolol or Toprol-XL. Diuretics of both types can deplete potassium, but usually in the happy world of CHF this is counterbalanced by ACE inhibitors and spironolactone which tend to raise potassium levels. Only blood testing can tell if supplementary potassium is needed. Orange juice or a banana may not be a bad idea if you lose a lot of fluid, particularly if you get leg cramping following the diuretic. If you get dehydrated, dry and stinging eyes often follow; on the other hand it could be pollen. Using artificial tears helps. Cheers! Barb N. protoplasm2@aol.com
 
Jon's note: Although it rarely is serious, furosemide can raise blood sugar (that's from the NIH patients information page for furosemide).


Ottye's April 27 reply to Jon's April 27, 2004 - Hi Jon, I saw your post regarding feeling bad and feeling stupid. It points up to how your progress is progressing. I am not there yet, but I am on my way thanks to God, you, and this web site. My focus stays on getting better and doing things that will get me there. So for the first time in my life it is about me and my needs. The spotlight is shining on me and CHFpatients.com has caused it to shine brighter than ever. I too have days that my best is lying on the couch doing nothing but breathing. NJetter@cinci.rr.com


James' April 28 reply to Roberta F's April 26, 2004 - Hi Roberta, Let me see if I have this correct: You suffer an obvious heart ailment and your PCP has not referred you to a cardiologist or specialist? Run as fast as you can from this guy. PCPs have no business treating conditions like this. After you find a new PCP, find yourself a CHF specialist and get in right away.
     The sleep study is a good move, but if your CHF is so far along and you're decompensated it may have limited value. Make sure you go to a board certified sleep lab and see a board certified sleep doctor.
     Start making the dietary modifications recommended in The Manual immediately, especially sodium and fluid intake. Ideally, meals should be prepared from fresh ingredients, at least until you start getting things under control. When buying meat, make sure it is not injected with a sodium solution (even some supermarket meats are). Don't just take the word of one of the guys in the meat department - it's better to find a butcher. One of our supermarkets actually labels all meat products with nutritional information. Other than that, I go to a butcher with a shop on the corner. Chicken and pork are most often injected with a sodium solution.
     Remember on fluid intake to have no more than 2 liters a day and that's fluid, not just water. Fluid includes coffee (should be decaf), juices, soda, and so forth. When you start the dietary modifications, be extra mindful of labels and hunt down that hidden sodium. You want to get under 2000mg a day. You may want to get your electrolytes tested since if they're out of whack that can account for issues as well.
     Lastly, evaluate your current/recent dietary habits for sodium and maybe fat intake also, then taper it off. If you just dive into a healthier diet, your body will probably not respond well. I did and although I initially felt much better, my body also rebelled after a couple of weeks and I had to increase my sodium intake again for a few weeks, then taper it off.
     There's so much on this that we could go on for hours and I'm sure you'll get other responses. Step one for you though, is to get your medical care under control. You are so right that in this day and age one must be an engaged and informed patient. Take care and good luck! jnj@spamcop.net


James' April 28 reply to Tom Campbell's April 26, 2004 - Hi Tom, I have a biventricular pacer with CRT. CRT has been found to have positive effects in certain cases but not all. For example, individuals with interventricular conductivity problems such as left/right bundle branch block can benefit. It is not indicated for all cases of CHF, however.
     Some folks who receive a BiV pacer feel an almost immediate effect; some actually feel worse and have it turned off. Myself, I felt no different until I went on a true low-sodium diet and then I felt much better, so it's not entirely clear how much of a positive impact the pacer had. I can say this much: Six weeks after having it implanted, my EF according to an echo was 5 to 10% improved, up to 30 to 35% from 25%. jnj@spamcop.net


Jon, April 28, 2004 - Hi everyone, If you want to use the chat room at an unscheduled time, the best way is to e-mail those you want to chat with and have them meet you there at a pre-set time. It's unlikely you'll meet anyone there just popping in at random, although it is possible. I am currently leaving the chat room open all the time for people to use if they want to do so.
     See this page for a really useful search tip you can use anywhere on the web: www.chfpatients.com/search_tip.htm. Jon.


Ruthie A's April 28 reply to Louise D's April 27, 2004 - Hi Louise, I am a diabetic as well as a CHFer and I have a few questions for you.
     You say your blood sugars are high. How high? You talk about your doctor. Is she a CHF specialist? A regular cardiologist? A primary care physician (PCP)? You mention eating oranges and bananas. Did you know they are both very high in carbohydrates and will raise your blood sugars big time? How many of them are you eating a day? Are you eating oranges, drinking orange juice, or what? Do you have a diabetes educator or a dietician specializing in diabetes who can help you come up with appropriate foods and a workable meal plan?
     I know how hard it is to juggle a CHF diet and a diabetic diet; you really need to get some help to get it right. You say you have been controlling your diabetes with just diet and exercise and that you don't want to go on insulin. Did you know that diabetes progresses, that it does not remain static? Therefore, what you used to be able to do to control your blood sugars may no longer work. That doesn't mean you have to use insulin. There are several oral medications that any doctor worth their salt would try with you first before even thinking about insulin.
     One last question: Are you weighing yourself each day to see if you are really gaining a lot of fluid weight? The Manual gives you a good idea of how to do this (i.e., in the morning, in your birthday suit, about the same time each day, keeping a log, etc). It's the best way I know to know if my diuretics are working (I regularly take them twice a day) and if I need a "jump-start" once in awhile.
     It would be a good idea for you to see a CHF specialist if you are not already doing so. I would also recommend seeing an endocrinologist specializing in diabetes since you have a complicated medical history. By all means, consult a diabetes educator or dietician, preferably both. If your insurance (hopefully you are blessed with some form of health insurance) requires referrals to see these specialists, ask your doctor for them. If she will not give you the referrals, find another physician who will listen to you and help you get the care you need.
     Learn everything you can, ask questions, and find professionals who will listen to you and help you. You have to be proactive but you need good, expert advice to care for yourself the best way possible. Ruthie A. rlaba51@yahoo.com


Lori K, April 28, 2004 - Hi, I had a question about having CM and upper respiratory infections. I have had a URI for a week and was put on antibiotics a few days into it when I started coughing up yellow/green stuff (sorry for the graphic details). Since then I feel better and have more energy but I find especially after meals I am coughing up tons of mucus.
     I had a 4 pound weight gain over a week or two prior to all this. Can this be fluid build up? I am not on a diuretic, only a beta-blocker and ACE inhibitor. My EF runs about 45 to 50%. I have been very active through this all, just feel some burning in my chest sometimes and some mild tightness. When I do cough though, I cannot believe the quantity of what comes up. It is amazing I don't feel worse.
     Can anyone tell me if this sounds normal or if it sounds like fluid build up. Thanks much. I love this site. Thank you Jon, for all your hard work. Lori. thegoof86d@aol.com


Scott Brown, April 28, 2004 - Hi Jon, I was wondering how your own health is progressing. You have been diagnosed and living with CHF. Are you worse or better? How is your EF? It sounds like you were having a bad day. Would you consider having a transplant when you run out of options?
     I am in my third year of CHF diagnosis. I am feeling much better most days, although there is no clinical improvement in my condition. The meds make a world of difference for me. Exercise has helped with many of my symptoms including fatigue and shortness of breath. Take care, Scott B. scott.brown@sunlife.com


Elizabeth K's April 28 reply to Louise D's April 27, 2004 - Hi Louise, I'm sorry you hit a rough spot. I'm fairly new to this. I had a heart attack with CHF/diabetes diagnosis in November of 2003. So far I've had the best luck giving high priority to blasting out the water and keeping the salt and liquids under very tight control.
     For me, oranges and bananas had to go on the occasional treat list. They send my blood sugar sky high, so I rely on prescription potassium and it seems to work without the sugar hit. I wish you well in finding the balance that works for you.
     Jon, if anyone will cheer on a napping person, it's a group of CHFers. It's not stupid, it's totally sane. The rest of the world is simply unenlightened. ;-) WmOccam@aol.com


Louise D, April 28, 2004 - Hi Barb and Jon, Thanks for the info. So my only option then is to take Lasix when I have obvious fluid retention? That's what I was doing in the past when I was taking other diuretics - hydrochlorothiazide and then spironolactone - and I didn't have this problem. Although the doctor had a problem with my not taking it every day. Since the doctors ignore my diabetes, I don't think talking to the current one about this will help. louport35@yahoo.com


Jon's April 28 reply to Scott Brown's April 28, 2004 - Hi Scott, My bio is at www.chfpatients.com/bios/jonsplace2.htm. I get by pretty well. My main problems these days are intermittent inability to get to sleep and lack of endurance. I still have what I call "bad heart days." I think I may always have these and assume them to be coming from spikes in neurohormone levels.
     I don't know if I would have a heart transplant. I would pray about it and follow the leading of the Holy Spirit in such a decision even if it went contrary to my own personal desires. Jon.


James' April 29 reply to Lori K's April 28, 2004 - Hi Lori, If you've been fighting a URI and this is only happening after meals, you might want to consider what you're eating. Foodstuffs like cheese, butter, and other dairy products can make you more than a little phlegmy! I've found that both coughing and blowing my nose are worse after eating such foods. Additionally, it is not at all uncommon to have a more productive cough when you get to the end of a URI as things are starting to break up in there and come out.
     For what it's worth though, any time you find that you're suffering a symptom that seems a bit much, be sure to contact your doctors and get their opinion on it. Although a lot of folks on the web know a lot of stuff, your docs are the ones who know you best. jnj@spamcop.net


Jim R's April 29 reply to Tom Campbell's April 26, 2004 - Hi Tom, Two weeks ago my electrophysiologist attempted resynchronizing my BiV pacer. From the looks of things, I was the first patient that their office has tried this with. They had 3 doctors, 4 techs, and an engineer from Medtronics there. The actual resynchronizing are just adjustments and is no more difficult then a regular pacer check. It does take considerably longer then a normal check because after each adjustment they use an echo to measure what effect each change has on your heart.
     In the 2 weeks since they did this I have not felt any improvement. This is a fairly new therapy and the results have been mixed but if it is suggested, it is worth trying since there is no real downside to having it done. E-mail me if you have any other questions. fastbreaksme@gwi.net


Michele, April 29, 2004 - Hi, I am wondering if anyone has experience with pseudoaneurysms or anything else my mom is going through. She is 68 years old and has a long and complicated medical history. She has been on dialysis for 4 years, had a triple bypass, artificial aortic valve, CHF, mitral valve prolapse and in December miraculously survived an aortic dissection.
     About a month ago she was told that she now has a pseudoaneurysm. She has decided not to undergo any major surgery again, considering she has just been through too much and her overall health indicates she would most likely not survive. Has anyone else had a pseudoaneurysm or is anyone on dialysis along with CHF? Thank you. wintigpep2001@yahoo.com


Jesse, April 29, 2004 - Hi, My father passed away on Thursday, April 22, 2004. He had CHF for only 2 years before his heart gave out in his sleep. We frequented this page for information and inspiration and I want to say thanks.
     I also want to say: Don't fight with your loved ones about whether they are drinking too much liquid, not eating right, etc. Just love them while you can. My father and I had a great relationship and I will miss him dearly. I get to know that we were best friends when he passed. We weren't "not talking" because we were mad at each other.
     Anyway, I am rambling. All I am saying is love them and cut them some slack. Having heart issues is something someone with a good heart will never understand until it is too late. jesselee69@hotmail.com


Roger's April 29 reply to Ruthie A's April 28, 2004 - Hi Ruthie, Like you said, having diabetes and CHF, and tying to juggle things around is a challenge. I love bananas and they do send my sugars up. The cardiac rehab nurse told me I am the only person she knows of that is on 300mg of sodium per day. The people I am in contact with ask how I figure out what I want for the day.
     I saw my cardiologist yesterday and he was very pleased with my blood work, except my sodium was 127. He said he would tell a normal person to go eat some higher sodium food, but said I'm doing okay. My wife said people are finding out that I'm not "normal." Also, we are trying to lower my homocysteine level with folic acid and B vitamins. He also added N-acetyl-L-Cysteine to my list of things to take. rkharmony@highstream.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.

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