The paperwork never ends The Archives
August 1-15, 2002 Archive Index

Shauna Y's 8-1 reply to Herbert L's July 31     CHF specialists & does anyone get disoriented?
Tracey C 8-1     seeking low sodium cheddar cheese
Jan S' 8-1 reply to Dina Rice's 7-27     AV node ablation experience
Gail 8-1     exercise and thanks to everyone
Ben B 8-1     extra weight and cardiomyopathy
Margaret 8-1     can EF go up, then down, and more questions
George S' 8-2 reply to Shauna Y's 7-31     adjusting to Coreg
Joseph P 8-2     ablation experience
Tom S' 8-2 reply to Tracey C's 8-1     low sodium yogurt and cheeses
Claudia S 8-2     cause of cardiomyopathy may be very important
Luc D 8-2     wanted to say hi to everyone
Jeremy 8-2     what does sluggish heart mean
Jon's 8-2 reply to Jeremy's 8-2     sluggish heart
Shauna Y's 8-2 reply to George S' 8-2     having some emotional turmoil - anyone else?
Tinu S 8-3     glad to find you
Marly 8-3     update, thanks
Judy 8-3     seek those with InSync pacemaker implants
Betsy 8-5     intro, could use suggestions
Sheryl's 8-5 reply to Shauna Y's 8-2     coping, depression & more
Karen R's 8-5 reply to Shauna Y's 8-2     coping & more
Jose 8-5     does anyone else get this sensation?
Shauna Y's 8-5 reply to Sheryl's 8-5     thanks, diet questions & more
Myrtle 8-5     seek advice
Dorothy Powell's 8-5 reply to Jose's 8-5     experience with dizziness
Jacky 8-5     so tired I can't do anything - is this possible?
Karen R's 8-5 reply to Jose's 8-5     diabetes and blood sugar
Shauna Y 8-5     Tinu, Jose and Betsy
Shauna Y's 8-6 reply to Myrtle's 8-5     dealing with doctors
Shauna Y's 8-6 reply to Jacky's 8-5     fatigue & more
Tinu S 8-6     diuretic questions
Jon's 8-6 reply to Tinu S' 8-6     diuretic use, amiodarone info
Myrtle C's 8-6 reply to Jon's 8-5     abbreviations
Michael G 8-6     questions about exercise and emotions
Myrtle C's 8-6 reply to Jacky's 8-5     guilt, EF, meds & more
Karen K's 8-6 reply to Tinu's 8-6     diuretics
Jacky 8-6     CHFspecialists questions
Jon 8-7     just a note
Shauna Y 8-7     questions - tests, worsening EF, heart size & more
Jon's 8-7 reply to Shauna Y's 8-7     valves and dental work
Gail 8-7     why isn't wine good for our hearts?
Jon's 8-7 reply to Gail's 8-7     wine versus alcohol & more
Elaine WB's 8-7 reply to Shauna Y's 8-2     I feel the same way
Elaine WB's 8-7 reply to Betsy's 8-5     coping
George S' 8-7 reply to Michael G's 8-6     Coreg, exercise, dealing with diagnosis
Jacky 8-7     when do I need a CHF specialist?
Pamela's 8-7 reply to Michael G's 8-6     finding exercise zone, my experience
Betsy 8-7     have 4 questions, please reply
Derald's 8-7 reply to Michael G's 8-6     exercise and heart failure & more
Pat M 8-7     never had CHF after all - it's PPH
Shauna Y's 8-7 reply to Jon's 8-7     and also to Jacky
Scott Brown's 8-8 reply to Betsy's 8-7     diuretic experience
Michael G 8-8     thanks
Wayne 8-8     seek info on ACE inhibitors versus ARBs
Jon's 8-8 reply to Betsy's 8-7     right heart cath
Karen R's 8-9 reply to Pamela's 8-7     seek Chicago area CHF docs
George S' 8-9 reply to Michael G's 8-8     CHF docs versus general cardiologists
Shelby H 8-9     using an interactive CHF program
Joanne R 8-9     questions about Lasix dose & fluid buildup
Michael G's 8-9 reply to George S' 8-9     finding the right doctor, exercise issues
Elaine WB 8-9     what can I do for aching feet?
Shauna Y's 8-9 reply to Elaine WB's 8-7     coping
Myrtle 8-10     seek info on web monitoring, hitting the wall questions
Shauna Y's 8-10 reply to Elaine WB's 8-9     my feet hurt too - aching feet
Ruth 8-10     seek parents of CHF children & more
George S' 8-10 reply to Michael S' 8-9     questions to ask doc about exercise
Shauna Y's 8-10 reply to Ruth's 8-10     you are not alone
Joanne R's 8-10 reply to Elaine WB's 8-10     aching feet and gout, allopurinal
Victor R 8-12     what improved my EF?
Elaine WB 8-12     foot pain, memory problems, fatigue, questions
Sherrell G 8-12     had a heart transplant a couple of weeks ago!
Mel G's 8-12 reply to Myrtle's 8-10     hitting the wall, sleeping problem - seek replies
Jon's 8-12 reply to Mel G's 8-12     sleeping problems
Patrick 8-12     must I pay income tax on Disability?
Tom S' 8-12 reply to Patrick's 8-12     income tax on Disability experience
Ben B's 8-12 reply to Patrick's 8-12     income tax on Disability experience
Derald's 8-12 reply to Patrick's 8-12     income tax on Disability experience
Jon's 8-12 reply to Patrick's 8-12     income tax on Disability
Bill C's 8-12 reply to Mel G's 8-12     sleep not restoring muscles - hit by a truck feeling
Tom S' 8-12 reply to Mel G's 8-12     sleep not restoring muscles - hit by a truck feeling
Myrtle C's 8-12 reply to Mel G's 8-12     thanks for the replies
Karen K's 8-12 reply to Sherrell G's 8-12     also to Mel, update & more
Jon 8-12     supplements for the brain
Judy's 8-13 reply to Patrick's 8-12     taxes on Disability income
Myrtle C's 8-13 reply to Karen K's 8-12     some counseling would no doubt help
Ian 8-14     could use some encouraging words
David 8-14     diabetes and CHF experience, and question
Tracey 8-14     some foods now taste awful & more - why?
Maria 8-14     seek kidney stone experiences
Tom S' 8-14 reply to Tracey's 8-14     smoking and taste
Elaine WB's 8-15 reply to Tracey's 8-14     using wine to add flavor & more
Jack D 8-15     unnecessary doctor visits
Jon's 8-15 reply to Ian's 8-14     my CHF experience
Tom S 8-15     coping with illness
Walter K's 8-15 reply to Tracey's 8-14     bad taste may be side effect of ACE inhibitor
Ben B's 8-15 reply to Ian's 8-14     living with illness & more
Tracey 8-15     lower sodium Chinese food & more
Roz 8-15     possible reason for "hit by truck" feeling

Shauna Y's August 1 reply to Herbert L's July 31, 2002 - Hi Herbert, I guess that where Jon led you says it all. For almost 4 years I saw an interventional cardiologist. I did not have the label "stage C" added till I started seeing a CHF specialist at the Cleveland Clinic in Weston, Florida, back in June of this year.
     I have to say that my former cardiologist had me on a calcium channel blocker, and no Coreg. I have since been taken off the calcium channel blocker since my new doc said that it is contraindicated in heart failure, and have had Coreg added, starting at 3.125mg twice a day. I am now up to 6.25mg twice a day. We are moving very slowly because I do have a bit of asthma. My dose is only increased under close supervision and so far, so good.
     I have a question. Does anyone here have a problem with becoming disoriented? I have had it happen a few times recently. It is embarrassing, and to say the least, scary! Remember that I also have diabetes, but it is controlled very well. Everyone please take care.

Tracey C, August 1, 2002 - Hi, Has anyone had any luck finding a low sodium cheddar to replace Tillamook? I've looked everywhere and Kraft says they also no longer make a cheddar. Hellavagood Cheese uses a lot of chemicals and salt substitute. Any tips would be appreciated.

Jan S' August 1 reply to Dina Rice's July 27, 2002 - Hi, In response to your question on AV node ablation, I had the procedure 02/99. It really improved my overall condition and I'm glad I had it done. It is a little scary to know I am paced now 98.5% of the time, but with regular pacer checks I have become more comfortable emotionally. Physically I am doing great.
     I had the procedure because I went frequently in and out of atrial fibrillation and the medications just couldn't prevent it. My electrophysiologist explained that I was stressing my ventricle function and the ablation would prevent that. Like everyone, I have my bad days and need a lot of rest.
     I am amazed how well I'm feeling after fearing I'd be dead by now when I was first diagnosed. I was diagnosed in January of 1998 with cardiomyopathy, atrial fib, and pulmonary restrictive/obstructive disease as a result of chemotherapy and radiation some 20 years before diagnosis. I will pray for your husband and his family. God bless, Jan S.

Gail, August 1, 2002 - Hi, Thank you everyone, for your input. I don't think water is the right thing for me since I don't swim and hate to get over my head. I do walk (hike on mountain trails) with my dogs up and down and over logs. I usually walk for 1 to 2 hours at least 5 days a week. I get my heart rate up for awhile during the walks. I am back to work now at a semi-physical job and hope the increase in physical activity and the decrease in fats will help. I have found reading everyone's notes very informative, Gail.

Ben B, August 1, 2002 - Hi, I just read about a new finding based on the Framingham study that excess weight is one of the most significant causes of heart failure. Apparently it may cause it by an unknown mechanism, and may explain many cases of idiopathic CM. Additionally, I'm certain many cases attributed to viral causes may have more to do with food entering the system than any virus. As a guy who still has trouble with his weight, this has given me an added incentive. Maybe I can't reverse the damage done, but I might stop more damage.

Margaret, August 1, 2002 - Hi, I have DCM and resolved (compensated, corrected, whatever the term) CHF. My EF went from 30% up to 55% this spring. At my last two appointments my doctor has referred with some concern to an S3 gallop he is hearing. He has upped my Coreg, my palpitations have gotten worse so that may be why. He has also scheduled an echo for my upcoming appointment in September.
     Since this time, my fatigue has grown worse and I have been experiencing bouts of shortness of breath, nausea, and some loss of appetite. All of these symptoms are sporadic. The only thing I can find any where about S3 is that it is found in the presence of CHF. Can my EF be dropping? Can it gets better, than go down again? I'm getting pretty scared. Could somebody let me know if they have any info on this? Thanks.

George S' August 1 reply to Shauna Y's July 31, 2002 - Hi, I also recently started taking 3.25mg Coreg for a week or so, then was bumped up to 6.25mg. I had some random episodes of disorientation and feeling a bit more tired than usual for the first few weeks at the 6.25mg level. My CHF specialist had pre-warned me it would take a few weeks for my body to adjust to the new med (Coreg) and he was right. Now that I've been on the new med for several weeks, the random episodes have totally subsided. Please consider asking your doc if you should expect a simialr adjustment period. George.

Joseph P, August 2, 2002 - Hi, I had an ablation done on 7/25/02, which took me off amiodarone. Since then I can feel my old a-fib trying to kick in but it doesn't happen, it feels funny not to feel the a-fib continue after it trys to start. The reason for the ablation was because I was getting so weak and they thought it might be my meds. It was mentioned about implanting the InSync ICD after the ablation. After the ablation I asked if they were going to put the new ICD in and I was told no, I did not need that. Good deal, Joe.

Tom S' August 2 reply to Tracey C's August 1, 2002 - Hi, I'm not real sure if this is what you are looking for but they claim to have low sodium cheese at this website: Lately, I have been dabbling at the art of cheese making and was shocked at just how easy it was to make a no salt cream cheese from homemade yogurt. Making yogurt is a real breeze and going the extra step to make the cream style cheese without any salt is a snap.
     There are several web sites that go into detail on how to make plain and flavored yogurts and you don't really need those so called "yogurt makers" to do it. I recently made a batch in a mayonaisse jar and cultivating it in a warm water bath in one of those two quart plastic thermos. The kind that is plastic inside and out and has a wide screw on cap.
     I am about to take the plunge with homemade cheddar but unfortunately it looks as if salt is a key ingredient in the processing of the curd. Soooooo we shall see. If you want additional details, write me at my e-mail addy.

Claudia S, August 2, 2002 - Hi, I came to Jon's Place a little over 3 years ago, I might add, scared to death. I had been diagnosed with idiopathic CM, and CHF. My EF was 15%. I remember a sentence in Dr. Marc Silver's Success With Heart Failure about how important it is, or could be, to find out what caused your heart failure. I was sure then that beside high blood pressure, mine was caused by an undiagnosed thyroid problem for over 20 years, or I possibly inherited it since my father died from CHF.
     After a year on medication and some weight loss my next echocardiogram showed some increase of my EF to 30%. The cardiologist felt it should be more, so he was confused. My husband than suggested that I have a sleep study done. I am a large person and did snore some but what the sleep study found was that when I fell into REM sleep my oxygen level dropped to 78% - not good at all. When a person is in REM sleep they have no control over their body's functions, like how deep I was breathing. It was not a result of snoring, which was considered minor. I was put on the CPAP machine without oxygen and it has been 4 months now, and the echocardiogram this week showed my heart normal in size with normal function, and an EF of 55%! I know I feel better. I no longer feel as if I am dragging myself through the day, and have much more energy.
     I know this is not everyone's answer, but thought it was important enough to share for those that may think it could be their cause of CHF and CM. I am not sure what the next step will be for me, but as most of us do, we take each day as a blessing and move along. I pray everyone is having some good days. Jon, thank you for such a wonderful service you provide to so many!

Luc D, August 2, 2002 - Dear friends, I just want to let you all know I'm still around and that I still look at the forum messages here. This is a very good forum for people like us who need advice and friendship. My medications are 240mg Lodixal, 50mg Cozaar, and CoQ10. My ejection fraction is 40%, and I still have these chest pains. I wish you all the best. Your Belgian friend luc.

Jeremy, August 2, 2002 - Hi, I have recently been in a trial during which they injected a radioactive tracer to trace blood movement. Via the gamma camera afterward, my EF was measured. For me this was the first time. My EF was 37%, this after 3 years on Coreg. The comment made, which I cannot find in your list, is "the heart is sluggish." Can you define sluggush? Regards, Jeremy.

Jon's August 2 reply to Jeremy's August 2, 2002 - Hi Jeremy, I don't think this has a specific meaning in medical terms, it is just the way your doctor described your heart, meaning it is not beating as strongly as a healthy heart. Jon.

Shauna Y's August 2 reply to George S' August 2, 2002 - Hi George, Thank you for answering. The doc did warn that I might feel a little worse before feeling better. I guess it will pass. Right now, I'm in a bit of a funk anyway. I have dealt with all of this pretty well, emotionally. Up until now, that is. Maybe some of you can relate to this.
     I think that I've been going through some sort of a mourning period. I miss the things I used to be able to do and the energy I used to have. I have days when I'm so weak and tired that it's hard to even get out of bed. I also have days when I'm able to keep up with the laundry, dishes, etc,..., even though I do have to rest a lot, meaning that chores take so much longer than they used to take. I don't look sick and so I think that it's very hard for my family, extended family, and friends to realize just how sick I am. Sometimes I even get a little angry and feelings of resentment start taking over, as I see these people living life so fully and they feel good while they're doing it. Does that sound too mean?
     I really can't remember the last time that I felt good, or normal. Okay, enough whining. I would really love to hear from someone who understands. God bless each and every one of the very special people at this forum.

Tinu S, August 3, 2002 - Hi Everyone, I just stumbled on Jon's Place and it is awesome. I am a 22 year old female just diagnosed with severe CHF, and it feels like my entire life just ended. I just want to let you all, especially Jon, know that you are doing a wonderful job with this web site and it feels good knowing there are people out there that feel and share my pain. Thanks.

Marly, August 3, 2002 - Hi Jon, Thanks for your note last July that taking Coreg is contraindicated for those with heart reate below 55 bpm. I stopped taking Coreg but more so because I underwent mitral valve repair and ICD implant while visiting my son in Nebraska last month. I will start Coreg maybe 2 to 3 months after surgery. The cardiologist changed my ACE inhibitor from cilazapril to ramipril. I do not know the advantage of this shift but it is likely because cilazapril is not available in the US. I am returning to the Philippines next week and hopefully can share more CHF-related experience with a changed medication together with repaired mitral valve and new ICD. More power to you!

Judy, August 3, 2002 - Hi, I am currently hospitalized for SOB. I was diagnosed with CHF in 1997. My EF was 26% and my heart was enlarged. With the help of a great cardiologist and good meds, I was relatively okay for about 5 years.
     In February of this year, I was hospitalized and given IV dobutamine, and again this trip. I had another heart cath last week and my EF is now less than 20% and my heart is significantly larger. The current plan is to implant an InSync pacemaker August 23rd and then start the heart transplant evaluation process. I am a 56 year old woman in good health otherwise. Does anyone have experience with this new type of pacemaker? It's only been FDA approved about 8 months.

Betsy, August 5, 2002 - Hi everyone, I'm new to this fabulous site. Many, many thanks, Jon. I was just diagnosed in May with CHF and DCM. My first cardiologist gave me the diagnosis that my heart was damaged but I had no blockages and no previous heart attacks. He prescribed meds and told me to return in 6 months, but did not mention diet, sodium, fluid intake, etc. A few days later I realized I was much more concerned over what he hadn't said, his vagueness.
     I returned and asked him for the actual diagnosis since he had not used the words! I would have remembered congestive heart failure and dilated cardiomyopthy. I sought a second opinion and am still in the midst of that process, but am much happier with my care. My EF is 35% and my heart rate is 37 to 40 bpm. I have a lot of shortness of breath and lightheadedness. I'm on zestril and Coreg (just 2 weeks) and was recently taken off digoxin (Lanoxin) because of too-low heart rate.I also take hormone replacement therapy (hot flashes!) and Prozac.
     Even walking is really tough. I'm working full-time and didn't realize that might change in the near future because of this condition. I'm just plain scared. I know I'm a real rookie at this - you all seem to know so much. Thanks for any words of wisdom.

Sheryl's August 5 reply to Shauna Y's August 2, 2002 - Hi Shauna, I also get depressed when I am having bad days. It is just so hard to cope with the lack of energy. Occasionally, I allow myself a little bit of self pity and crying or anger or whatever I am feeling but I also know I will feel better mentally when I feel better physically, not that we ever feel "normal" as you call it. That is the part you have to work though, and be thankful for all the "good" days that you have. I think it is human to feel resentful sometimes, but it is a waste of energy.
     When I was first sick, my goal for the day might be taking a bath, brushing my teeth and drying my hair. In comparison, I can do a lot more now, so I am thankful for the improvement. Be sure to use your family as a support system and if they need to be reminded that you are sick, tell them so. I bet none of them are psychic. ;-)
     If your depression goes on for over 2 weeks or so, you may need to discuss it with your doctor. Find a family member, a friend or a church person, whatever works for you, to talk to about your feelings. I think all of us get whiny sometimes. I call it tired and cranky, just like a toddler who needs some sleep. What I would give to wake up refreshed like I had had a good night's sleep! Take care, Sheryl.

Karen R's August 5 reply to Shauna Y's August 2, 2002 - Hi Shauna, I read your post and could totally relate to how you are feeling. I am 42 with DCM, CHF and Type II diabetes. I have two kids ages 6 and 4. Like you, I have good days and then the bad days where hardly any daily chores get done. It is hard and even though my husband tries to be supportive it is hard for him to understand why I can't keep up with the house since it's the "only thing" I have to do. I think sometimes in an effort to keep life normal, he forgets that I stay at home not by choice but for my health.
     Anyway, I could go on but for now I just wanted to let you know I totally understand. Also, I don't know if I feel disoriented, but often I am not able to concentrate on things - I just feel too tired. I notice I'm more forgetful but people just say it's because I'm over 40! Anyway, take care and keep reading this board, it is a great source of comfort and lets you know you're not alone.

Jose, August 5, 2002 - Hi, I'm new to the forum but have been lurking (and coping with cardiomyopathy) for awhile now. Thanks to all of you and especially Jon, you've already helped me a great deal! I'm 48 and was diagnosed with idiopathic dilated cardiomopathy about 4 years ago. Although my initial EF was below 15%, I responded well to meds and several months later appeared "recovered." I did well off all meds except for an ACE inhibitor for more than two years but - I bet you already guessed this part - I relapsed and ended up back in CHF last year.
     Once again I've done well with meds, which are currently Cozaar, Coreg, Coumadin, digoxin, and Protonix. My question concerns a sensation I've been having for the past few months. It's not quite dizziness or lightheadedness, more like a feeling like I'm still moving even when I'm standing still. Some days I don't notice it at all, other days it's frequent.
     My primary care doc suspects it is a result of the Coreg, but is sending me to a neurologist and an ENT just to be sure. My CHF doc isn't sure what it is but suspects my diet. I've recently been diagnosed with diabetes, which I'm controlling well without medication. He thinks it's low blood sugar, but my readings don't seem to support that. Has anyone else had this sensation? Any thoughts?

Shauna Y's August 5 reply to Sheryl's August 5, 2002 - Hi Sheryl and Karen, Thank you both soooooo much for your replies! It is so nice not to feel so all alone in all of this. The Beat Goes On has been an absolute blessing. I feel better just knowing that I'm a part of such a special group of people.
     Karen, how do you deal with your diet? I am a newly diagnosed diabetic and am finding it very hard to plan meals that are "legal." My doc said that if you take a bite and it tastes good, then spit it out. <g> I'm only allowed 1.5 grams of sodium and 1.5 liters of fluid daily, and of course no refined sugar, breads or potatoes. I'm sure you know the routine. I'm in the process of reading Diabetes Solution by Dr. Richard Bernstein. He is a type one diabetic and also has cardiomyopathy. He suggests eating a diet high in protein, fat, and very low in carbs, kind of like a Dr. Atkins type diet.
     Well, it's after 4:00 in the afternoon, and I'm not even halfway done with my chores, and ya know what? Today it's okay. You all are in my prayers. Have a good one!

Myrtle, August 5, 2002 - Hi, I am new here and looked at some of the info Jon has put together and I am impressed. I had heart attack in 1991 which was misdiagnosed. After the diagnosis and cath procedure, I saw 8 cardiologists over 10 years. They blamed my depression for my fatigue, the blame the patient bit. In October I began having edema and realized I needed another cardiologist. He was astounded at the info in my chart. My problem with CHF is that I can only tolerate Coreg and a diuretic. The ACE inhibitors cause a cough that wakes me often. The ALLs have created other problems.
     My present cardiologist was certain I would feel better in 3 months and he is getting discouraged with me. I can do little without getting breathless and I sleep more during the day if I am not careful of my activities. I watch my diet and took a test on the web that indicates I am in class 3.
     Jon, thanks for this web site and all the good info you have put together. You're serving a good purpose. I ask God to bless you in all things. Any suggestions would be appreciated and just knowing others understand helps. Myrtle.
Jon's note: ALLs?

Dorothy Powell's August 5 reply to Jose's August 5, 2002 - Hi Jose, Like you, I have dizziness at times. My sense of balance is not nearly as good as it was. I was diagnosed in April, 1981, and have been on Coreg since. I have fallen several times and sometimes completely miss when I am trying to sit down in a chair. My doctor has questioned me several times about bruises on my body and smiles sweetly when I tell her I really do not recall exactly how I got a bruise. I think she thinks someone is battering me but I do it without help! Best wishes as you deal with life as a CHFer! Dorothy Powell.

Jacky, August 5, 2002 - Hi, Is it really possible that an ejection fraction of 35% can make you so tired you don't know what to do? Could it be heat and humidity, or age (67) or the meds I take? I take amiodarone, diovan, synthroid, and lipitor. Is it all of the above? I feel as if I am a shirker. My 78 year old sister is so energetic I feel guilty!

Karen R's August 5 reply to Jose's August 5, 2002 - Hi Jose, I've been diabatic for 5 years now and I remember when I was first diagonosed with diabetes, I had symptoms of low blood sugar even though they were in the acceptable range. When I asked my doctor, he said this was normal because my body was still adjusting to an overall lower blood sugar level. After a few weeks the symptoms disappeared unless my sugars really dropped. Perhaps your body is still adjusting to your new diet.
     Also, one of the CHF meds I take talks about changing blood sugar levels in diabetics, but at the moment I can't remember if it lowers it or what. Maybe that is something to ask your doctor about. Good luck, Karen.
Jon's note: Coreg raises blood sugar

Shauna Y, August 5, 2002 - Hi Tinu, Betsy, and Jose, welcome. I'm a newbie also, but will try to help as much as I can. Tinu, I understand how you feel about your life being over, and I know that it's a very scary time for you. As you have probably read here, you can live very well with CHF with all the new meds and treatments that are available. I don't know the particular details of your CHF, and hope that you are seeing a CHF specialist. I hope that all three of you are seeing a CHF specialist. I just cannot stress how very important it is!
     Betsy, I can totally relate to the memory thing and don't think that it has a whole lot to do with being over 40. I think that our condition plus all the meds that we're on has a lot to do with that.
     Jose, diabetes and CHF, that's a rough combination. I deal with the same conditions myself, being recently diagnosed with type II diabetes. As far as feeling like you're still moving even when standing still, I don't know but I have had the same sensation. No one has been able to give me an answer for that one. Make sure you all read The Manual. Again, welcome.

Shauna Y's August 6 reply to Myrtle's August 5, 2002 - Hi Myrtle, and welcome. I hope that you are seeing a CHF specialist. If not, you really, really need to be. Please do not let a doctor tell you how you should feel. I went through that for 4 years with my former cardiologist. By the time I wised up and fired him, and sought the care of a CHF specialist, I was in really bad shape! My CHF had been so poorly managed that I was in severe fluid overload. I had told my previous cardiologist that I could not tolerate Demadex, that it made me ill. He said you have to take it and as a result I skipped doses. Well, my new doctor switched me to Lasix and I have no problems with it. He also put me on a fluid and sodium restricted diet which has worked wonders!
     I guess we have to look at ourselves as customers and demand the service that we deserve. Make sure that you read The Manual and refer to it when you need to. It has a lot of information on medications and other very valuable goodies. God bless you.

Shauna Y's August 6 reply to Jacky's August 5, 2002 - Hi Jacky, Yes, yes, yes, it is possible to feel tired with an ejection fraction of 35%! I am more than 20 years your junior and I feel very tired with the same EF! Bless your heart, you are not a shirker. Meds can also make you feel more tired than normal. In reading over your meds, I noticed that you're not on any of the typical CHF medications. Are you seeing a CHF specialist? Please don't be to hard on yourself. It may be a good idea to take this complaint to your doctor. Take care and God bless.

Tinu S, August 6, 2002 - Hi, Thanks Shauna, for the encouragement. I was just wondering if anyone knows the target dose for furosemide (Lasix). My doctor just increased mine to 40mg five times daily. I really don't see the need for that because I weigh myself every day and I seem to lose weight every day. I have no swelling and feelings of shortness of breath aren't common. I am presently on Coreg, Altace, digoxin, Coumadin, Aldactone (spironolactone), and iron supplements.

Jon's August 6 reply to Tinu S' August 6, 2002 - Hi Tinu, There is no target dose for diuretics. They should be given as needed. Many CHF specialists use the neck veins to look for diuretic effectiveness, and that's a good method for an experienced specialist to use.
     Some doctors have a notion that heart failure patients must be kept extremely "dry" while others think they should be kept a little "wet." Dry means no extra blood volume so that your heart has the smallest amount of blood to pump, reducing its load and reducing chance of edema. Wet means not trying to wring out every last drop of extra fluid, but letting us be a little more "normal" in terms of blood volume. Is one better than the other? It depends on the patient. Personally, I think it's up to the doctor and the patient to decide this strategy. I prefer to be very dry but many don't.
     Regardless, taking a loop diuretic 5 times a day is ridiculous in anybody's book. Question your doctor for specific reasons why you should take it this way, backed up by trial evidence to support his idea. Taking Lasix 5 times a day runs against what I have read about outpatient diuretic use in heart failure patients. If he does not have a reason that you can research and that you then agree with, please get a second opinion from another doctor.
     One thing to remember is to always check your own treatment against the official CHF treatment guidelines! See this page in the CHF FAQ. Any time your therapy does not adhere to the guidelines, ask why! There may be a good reason - people react differently to meds and illnesses - but if there isn't a very good reason (not vague or personal opinion) change doctors, because yours is not on the ball.
     Demadex is preferred for CHFers although Lasix has not yet been knocked off its pedestal - it will be. For oral Lasix, 40mg once a day is a normal dose for a CHFer with no chronic edema; 80 to 120 mg daily (often in 2 smaller doses) for those with problem edema; and 160 to 240mg daily (usually in 2 smaller doses) for those requiring industrial strength fluid elimination.
     On another topic, a lot of people were very interested in the mailing I sent out Saturday about amiodarone (Cordarone). I added 3 more articles to it from previous mailings and put it on the text page. You can read that expanded article here. Jon.

Myrtle C's August 6 reply to Jon's August 5, 2002 - Hi Jon, The All meds I referred to are angiotensin II blockers such as Micardis and Diovan to name two. They presumably play a role in lowering blood pressure. They don't have the side effects of the ACE inhibitors such as the coughing problem. I forgot to mention in my note that Digitec also causes me extreme fatigue and some breathless. Thanks Jon and Shauna Y. I have read The Manual and will return to it often.
Jon's note: The abbreviation threw me ;-) They are usually called ARBs

Michael G, August 6, 2002 - Hi all, This is my first post on this site. I was diagnosed with dilated cardiomyopathy last December with an EF around 30%. This was a complete shock to me as I did not feel as if anything was wrong with me. I just went for a physical. I was started on lisinopril and Coreg and have had a couple of echos since the initial one with my EF bouncing back to the 50s.
     I have a couple of concerns though, which I would hope people here can address. First, with regards to exercise, I am a very active 30 year old male and lift weights, swim, and do other aerobic activity 5 to 6 days a week. My cardiologist told me that exercise is good for me. However, since I started Coreg sometimes after an intense aerobic exercise I feel as if my breathing is not quite right and I wonder if I am somehow hurting my heart. While I am exercising I feel fine. Any thoughts?
     Also, how do people deal with the idea that the heart condition could worsen at any time? My doc believes I have an excellent prognosis due to the fact that I had no symptoms when this was caught, but when I have days when I feel "off" I keep thinking that maybe my heart is getting worse. Thanks for any input and thanks for keeping this site up and running. Mike G.

Myrtle C's August 6 reply to Jacky's August 5, 2002 - Hi Jacky, I am new here also. I do know that we cannot compare ourselves to others. That makes for big-time guilt. I have a 35% EF too, which dropped from 55%. I read here that the amount it lessens is more important then the actual number.
     I felt great fatigue and breathlessness when taking Diovan, which is an ARB (angiotensin receptor blocker). God bless you.

Karen K's August 6 reply to Tinu's August 6, 2002 - Hi Tinu, I read with interest your post regarding your dosage of Lasix. My doctor told me early on that Lasix is called "Lasix" because its effects last 6 hours. I totally agree with Jon; it sounds as though you are overdosed.
     I'm interested also, in your response Jon, and mention you made of another diuretic. I'll have to remember that for when I see my CHF doc next although I've been on 40mg of Lasix since being diagnosed in 1991 and it seems to do the trick. Karen K.
Jon's note: Hi Karen, See this article

Jacky, August 6, 2002 - Hi, It's me again. I am having a few bad days I guess so these questions keep coming up! Reference has been mad to CHF specialists. The doc I see at the moment is an EPS cardiologist, I was referred to him originally for ventricle arrhythmia). I really like him but is this good enough? Does anyone know of a CHF specialist in the Houston area? Thank you so very much for your posts.
Jon's note: Try clicking the links in Shauna Y's post and also see this page

Jon, August 7, 2002 - Hi everyone, Posts may be delayed awhile today. I have to set up some new e-mail accounts on my servers, pick up my truck from the auto shop, and go price some supplements at a store clear across town with my wife. Jon.

Shauna Y, August 7, 2002 - Hi Jon, I read here on your site that people with any valve leakage at all should take antibiotics before and after any dental procedure. I asked my new doc about that as I have moderate regurgitation of the mitral valve, and he said that my valve is leaking because it is stretched because of the enlargment of my left ventricle. You only need antibiotics if your leakage is caused from a prolapsed valve. Would you agree with this, or do you think I need to ask for the antibiotics anyways? I see him again on the 20th of this month, and do need some dental work.
     Also, I have had CHF for over 4 years. For three of those years I kept an EF of 45% and normal left ventricle size. I had an echo in December of 2001, which also showed an EF of 45%, and normal left ventricle size. Well, when I had my echo the beginning of June of this year, my EF had fallen to 35% and my left ventricle was enlarged to 6.3, and also my left atrium is enlarged to 4.4. I have been on Prinivil throughout my ordeal and thought that was the reason for my ventricle going back to normal size after the first year. I'm still on the prinivil, along with Lanoxin, Lasix, spironolactone, and have just had Coreg added. Why would this happen now?
     I had pneumonia three times last year, and was hospitalized one of those times. However, that all happened before the echo I had in December. Is it possible that the pneumonia caused this, and there was just a delayed reaction? I would really appreciate your input. I will be asking my cardio this time, but would really like your input first. Thanks a bunch, and thank you again for this life line.

Jon's August 7 reply to Shauna Y's August 7, 2002 - Hi Shauna, Ignoring guidelines for a moment, if it were me, I would get the prophylactic antibiotics. You can read the official guidelines at ;-) Jon.

Gail, August 7, 2002 - Hi to all, I have continued to read all the interesting posts. My doctor had me on 60mg Lasix and 80mg Aldactone, and every time I have a CHF episode he just keeps increasing. He wants me to be on the "dry" side. In The Manual, it states wine is poison. Why? I thought that wine was supposed to be good for the heart.

Jon's August 7 reply to Gail's August 7, 2002 - Hi Gail, The Manual says that alcohol is a cardio-toxin, which means that alcohol poisons the heart muscle. That came from the Merck Manual, a medical textbook. There are components of wine (grape seed and grape skin extract, etc.) that are good for you due to OPCs (Oligomeric ProanthoCyanidins) and other chemical components. However, the alcohol has a bad effect on the heart, especially if it is damaged. See this page. (let it load and read the first question you see and the replies to it)
     Those parts of wine that I mentioned can theoretically help slow down arterial blockages and other aspects of heart "disease" but the alcohol is bad for your heart function. You can get the benefit of the grape seed and skin extracts without the harm by drinking 2 glasses of purple grape juice a day, according to a presentation by Dr. John Folts at the April 1 of 2001 annual meeting of the Federation of the American Societies of Experimental Biology.
     I realize that it is very easy to get the impression that booze is good for you from the media. However, remember that alcohol is not the same as wine - it is one component of wine and other such beverages. Benefit may not come from the alcohol at all, but from other parts of the drink. That is still much-debated. The media glosses over these "fine points" and leaves unproven ideas floating around everywhere. Alcohol may be good for us in small amounts, but in heart failure patients, it looks like a bad idea for now. Jon.

Elaine WB's August 7 reply to Shauna Y's August 2, 2002 - Hi Shauna, Be assured that you are not alone in feeling that way. You are the first I've seen describe it. I have the very same feelings and it seems as though it takes forever just to get the laundry, housework, and meals done. I never have time for myself other than when I collapse in the recliner or the bed to rest, and I fall asleep almost instantly just being worn out from walking around the house. I just try not to stress over it or that takes more energy I do not have! I pray for strength and courage every day plus lots of patience, which at times seems to be totally nil! <g> All I know to do is to hang in there because it sure beats the alternative!

Elaine WB's August 7 reply to Betsy's August 5, 2002 - Hi Betsy, I don't know if what I say would be considered wisdom, but I can tell you that with my stroke on September 4, 2001, I have learned that some stuff is just that - stuff - and does not require my energy to be worried with it! I spend a lot of time with the serenity prayer and reminding the Lord that I do need His constant care, then I try the best I can to take one day at a time, doing the best I can with what I have. Some days, that is not much. Just hang in there and keep coming to this site. It is the most helpful thing in a personal way that I have found. Prayers and blessing on you all.

George S' August 7 reply to Michael G's August 6, 2002 - Hi Michael, It is a very human reaction for newly diagnosed CHF patients to go through the denial/acceptance cycle espoused years ago by Kubler-Ross in "On Death and Dying." Unfortunately, there is no magic button to push to make CHF go away. It's an incurable condition which can be effectively treated. The sooner we are able to accept this reality, the more prepared we can be to make the good days far outweigh the bad ones.
     Three very strong suggestions I would offer to you and other newly diagnosed CHFers that I found to be invaluable in the acceptance and understanding of this disease include: 1) Take whatever time is needed to read everything on this site - there is no substitute, Jon has done some remarkable work here that saves years of individual research; 2) get and thoroughly read Dr Marc Silver's book, Success With Heart Failure; and 3) invest the time and effort to find a CHF specialist you are comfortable with.
     I can tell you from recent personal experience that I wasted weeks of valuable time in fighting the CHF diagnosis before I armed myself with accurate information. The bottom line is how an individual handles the reality of his own mortality is a very personal issue between him, his family, and his Maker. What works for me may not have any value to you or anyone else. I would suggest you help them understand the facts of CHF; accurate information can bring some comfort at the time of disease acceptance.
     As for your body's response to Coreg, please read Jon's excellent reference work on that specific drug. Then ask your doc the specific question. My CHF specialist also strongly encourages constant exercise, but he also cautions that I may not have the same energy level from days gone by. This is due to the CHF impact on the heart muscle combined with your body's response to the meds.
     Please keep in mind that I'm no doctor. Hey, I don't even like docs. So get your expert advice from your own doc, please.

Jacky, August 7, 2002 - Hi, I have one last question. I reread The Manual regarding cardiomyopathy and CHF not being the same thing but one causes the other. As I have been diagnosed with cardiomyopathy, can't I wait to see a CHF specialist if and when I develop CHF? You will gather I am not keen on changing docs but want the best for me. I am getting over the extreme fatigue so these questions should stop - till next time.

Pamela's August 7 reply to Michael G's August 6, 2002 - Hi Michael, It sounds like you're doing well which is great! Have you had a Vo2max test? That's where they hook your breathing up to a machine while you walk (progressively faster and at a greater incline) on a treadmill. The doctor monitors a great many inputs and gives you an appropriate target heart rate for exercise. I believe this is the best way to confirm where you are in terms of aerobic capacity, which can definitely be affected by the meds you take.
     I had a virus that caused cardiomyopathy and CHF two years ago and have fully recovered due to a combination of Coreg, accupril and a lot of exercise. I work out nearly every day with weights, treadmill, etc. I have a target heart rate of 147 beats per minute based on my Vo2max test. My CHF docs are huge proponents of exercise and felt strongly that the Vo2max test was important to understanding what I should be aiming for. You might want to consider asking your doctor.
     Are you seeing a CHF specialist? If not, you should consider that versus a general cardiologist. It made a huge difference for me both physically and mentally.
     About gettting worse, it's interesting that my doctors, who run a major Chicago CHF clinic, tell me my condition will not worsen. They say, "You had it, you recovered, you're done." They do say that I must stay on my meds and that without them it could come back, but they say that's the only way. Has your doctor given you a reason to believe that your condition could worsen? If not, I wouldn't dwell on it if you're feeling good overall, easier said than done, I understand. The diagnosis has major psychological implications that few doctors address. Good luck!

Betsy, August 7, 2002 - Hi, A few questions from a rookie. What should I expect from Lasix? I'm taking 40mg Lasix daily, but I haven't had a huge response to it. I have no visible swelling, but have occasional wheezing.
     Does anyone have any ideas why I have such a slow heart rate (35 to 40 beats per minute)? Also, I walk about two blocks into work from my parking deck. Some days I feel like I can't make it, other days are better. However, I always seem to really perk up in the afternoon. Any ideas?
     I'm having a right heart cath Tuesday. Has anyone had one? Can I go to this one alone? What might they be looking for? Thanks for the replies.

Derald's August 7 reply to Michael G's August 6, 2002 - Hi Michael, We've got a lot in common. I was diagnosed with an EF of 30% last December and I've bounced back to the 50s. However, I am not as active as you. I have off days too and find the meds partially disabling, so you're not the Lone Ranger. I think Pamela gave you very good advice. Another idea would be cardiac rehabilitation. They can help you develop an exercise program that's perfect for you.

Pat M, August 7, 2002 - Hi, I finally had my heart cath after two and a half years of tests and a five year misdiagnosis of CHF. I have Primary Pulmonary Hypertension. It is fairly advanced now, apparently. My heart checked out clear for blockages and valve problems. My doctors are looking into medications that might help the PPH ao they will refer me if they need to. I need time to digest this, I guess. I am 62 years old and I have had a good life, so I really can't complain. I also know the Lord has His hand on me and I am His, Pat M.

Shauna Y's August 7 reply to Jon's August 7, 2002 - Hi to all, Jon, thank you for your reply and I think that I would feel more comfortable taking the antibiotics before and after a procedure. My doctor is pretty good about working with me when I have a problem with something. Thanks.
     Jacky, from everything that I've read, an ejection fraction of 35% will lead to heart failure. That could very well explain why you feel so tired. I'm really glad that you are seeking the care of a CHF specialist. You are right, you need the best, and this is nothing to mess around with. Good luck and God bless.

Scott Brown's August reply to Betsy's August 7, 2002 - Hi Betsy, One strategy with heart failure patients is to keep them slightly dehydrated. If you are too dehydrated, you are going to feel gross, especially if you are low on potassium from the Lasix. If you are too "wet" you are going to get wheezing.
     If the Lasix is not making you pee more, you likely need more than 40mg. I require at least 80mg to have a significant effect. Most of the time, I take 120mg and then the flood gates open. You likely know from your cardiologist that you need to watch you weight carefully to know when you have accumulated too much fluid.
     If your problem is catching your breath, Lasix will clear up your lungs very well. As you know from all of the information on this board, sodium causes fluid to retain in your body. If you reduce dietary sodium, reduce liquid intake (I stay at 6 cups a day - consult your doctor), and take Lasix according to weight gain, you should be back to feeling as normal as possible (from a breathing perspective). Good luck, Scott Brown.

Michael G, August 8, 2002 - Hi, Thanks for all the good advice. I do currently see a cardiologist, not a CHF specialist, but she is great. I think she knows quite a bit about my condition, does research in the area, and best of all, she really listens to what I have to say - a rarity with docs. I see her in 2 weeks for a 6 month checkup and we will discuss this more then. I will mention the possibility of a Vo2max test and see what she has to say. Sometimes I just need to hear some reassurance, don't we all? I hope all continues to go well with you, Mike.

Wayne, August 8, 2002 - Hi, Is anyone aware of recent comparisons of ACE inhibitors to ARBs? My doctor took me off Lotensin because I complained of discomfort in breathing. I was coughing very slightly, but I think that those side effects were as much from Coreg as the Lotensin. Since The Manual insists that ACE inhibitors are a must, I am nervous about the change to the ARB Cozaar. Before I talk with my doctor, I would like to have as much information as possible. Thanks.

Jon's August 8 reply to Betsy's August 7, 2002 - Hi Betsy, I have had a right heart cath. Other then the annoying knot on my neck afterward that took a month or two to fade away, I had no trouble with it. It is done through your neck and measures pressures in the lungs and more. Other than the catheter insertion point, it is not much different to the patient than a groin cath. You can read about it under on my pulmonary hypertension page - all PH patients have one. Jon.

Karen R's August 8 reply to Pamela's August 7, 2002 - Hi Pamela, I live in the Chicago suburbs and currently see a cardiologist who seems to be doing all the right things for me. I was interested in knowing the name of the CHF clinic you go to. With all the posts about seeing a specialist, I want to start researching for good ones in our area. Thanks.
Jon's note: If you are near Christ Medical Center, Marc Silver practices there

George S' August 9 reply to Michael G's August 8, 2002 - Hey dude, I wish you nothing but the best and I certainly don't want to twist your arm on this issue of cardiologist versus CHF specialist. However, what I would respectfully ask you to consider is whether your life is worth gambling on being with a doc you're comfortable with or one who is an expert in the CHF field and sees primarily or only CHF patients?
     It sounds like your doc has initiative and tries hard to keep up with CHF stuff. That's truly admirable, but please please don't confuse initiative and effort with indepth experience and expertise in the highly specialized field of CHF.
     One last thought. I've read somewhere on Jon's site an excellent list of specific questions to ask your Doc about exercise tolerance for CHFers. You may want to run those questions by your doc. I did with mine and it helped tremendously. Just some food for thought, sir. I wish you all the best.

Shelby H, August 9, 2002 - Hi, Is anyone else on the Alere CHF program? I just started it and I think it's really helpful. It's web site is at Basically, they send you an electric scale which is attached to a box that is attached to your phone line. Every morning and evening you weigh yourself and the box asks you a couple of questions like, "Did you use extra pillows to sleep last night?" You answer yes or no, and then the box dials up Alere and transmits your information.
     Your information is tracked by nurses who look for the subtle changes that indicate that your CHF is getting worse. The nurses call you if they see anything and the information is also transmitted to your doctor so he gets a complete record. Also, they have a monthly educational call where they talk about different CHF-related topics. The best part is, it's 100% covered by my insurance (Pacificare). They said they have a 91% success rate of reducing hospitalizations by catching worsening symptoms quickly and by patient education. I'm pretty well educated and also was very careful about following through with my weighing, but this makes it that much easier.

Joanne R, August 9, 2002 - Hi, This site is not only a blessing for me, it is saving my friends from listening to my ailments! I want to know if other CHFers have had to increase the amount of Lasix they take. I actually keep a "sodium diary" like some dieters keep food diaries, so I am confident that I am staying well under 2000mg per day. I have had a change in meds from Vasotec to Cozaar and had to add allopurinol to avoid a recurrence of gout. I had gained pounds at this morning's weigh-in and I doubled my Lasix (a standing okay from my doctor) and then I dropped 4 pounds of water! Do any others have experience with this that I should research before I go to the doc?

Michael G's August 9 reply to George S' August 9, 2002 - Hi George, I will think about this issue more. I currently see a doctor at Northwestern in Chicago. I know that Marc Silver and his practice are here as well. Right now my gut instinct is to stay with her. I would rather have someone who listens to me and responds accordingly (who also happens to have a good knowledge base) than a specialist who doesn't give you the time of day. I know not all docs are like this but my experiences have been more negative than positive.
     Again, I will see what she has to say about exercise tolerance in a couple of weeks. She was very vague initially but maybe once I am specific she will schedule me for some cardiopulmonary testing. I just want to know what to aim for during my workouts so I will realize when I am overdoing it. I could not find that list of questions you referred to on this site. Do you remember what section it is in? Thanks for the advice and keep well, Mike.

Elaine WB, August 9, 2002 - Hi, I have a puzzling question. I remember reading on some of the posts from the past about people with their feet aching. I have not found those yet. If you are out there, please advise what you did to help the aching. It doesn't matter what shoes I wear, if any at all. Nothing seems to help but ocassionally pressing them on the cold tile floor and that is a very brief respite from the aching. Any advice will be greatly appreciated! Thanks in advance. Now, back to the old posts.

Shauna Y's August 9 reply to Elaine WB's August 7, 2002 - Hello everyone, Elaine, it sounds like you may need a little help! Bless your heart, you are working way too hard if you are collapsing in the evenings. That's not so good for an already overworked heart especially when we can feel that way even if we do nothing! We can get upset at our limitations, but we do have to accept them.
     There have been so many people who have e-mailed me, venting and relating to one of my posts about the emotional aspects of this disease. I have enjoyed the e-mails very much. They've actually played a role in getting me out of this awful funk that I've been in. So please, if you just need to vent or just write to someone you can relate to, and can relate to you, feel free!
     Shelby, the Alere CHF program sounds very interesting. I will definitely check out the web site. Thanks for the info. Each and every person on this message board is a very, very special human being. God bless each and every one of you. You all are in my prayers.

Myrtle, August 10, 2002 - Hi, I read Shelby's post of August 9 about the Alerenet system and wonder if Jon or others have knowledge about this that is not a advertisement for the program.
     The other question is about how the "hit the wall" fatigue comes on so strongly that I have very little time to react. My brain goes numb and I have a great need to lie down. Do others experience this? I am not saying I feel great and then hit the wall, but along with the regular fatigue I live with it is difficult to know just when it will come on to the point of "brain dysfunction and weakness." I'd appreciate any answers.

Shauna Y's August 10 reply to Elaine WB's August 9, 2002 - Hello Elaine, I suffer from aching feet also. I also have a problem with my legs. They start aching so badly at night sometimes that it wakes me up. Pain relievers don't seem to do a thing for it either. Stretching of my legs will give me very temporary relief. I do the same thing with my feet to get relief - pressing and stretching them on the tile floor. If you find an answer, please let me know!

Ruth, August 10, 2002 - Hi, Thank you for this web site; all the people posting and replying is incredible. I am the mother of a 2 1/2 year old child named Destiny who has CHF and dilated cardiomopathy. At this time, Destiny is in need of a heart transplant but her antibodies are at 100% and in order to be put on the list, her antibodies must be around 40% or lower. She has a pacemaker in her stomach that is set to the highest settings and has 12 months of battery life. This pacer was placed 3/28/01 after a Ross Procedure.
     Destiny has been in and out of the hospital since March of 2002 with cardic failure. Our last stay was 50 days, 38 of them in pediatric intensive care. Destiny is currently taking an anti-rejection drug called Cellcept (mycophenolate mofetil) twice a day for 2 hours, but she is also receiving metoclopramine (Reglan), enalapril (Vasotec), digoxin (Lanopxin), furosemide (Lasix), lovenox and because of weight she is on TPN/lipids 20% with MVI and famotidine, potassium chloride, and levocarnitine. All these meds run through her in a central catheter line called a Hickman. All these drugs are IV.
     Are there any parents posting? Just to know I am not alone on this road but we are all here for the same reasons, friendship from another who understands. God bless you all, Ruth.

George S' August 10 reply to Michael G's August 9, 2002 - Hi, The list of questions to ask your doc reference exercise parameters for CHFers is in the FAQ. See Hang tough, think positively, and all the best to you, George.

Shauna Y's August 10 reply to Ruth's August 9, 2002 - Hi Ruth, Your post has touched me deeply, as I'm sure it has all of us here. I know that it is hard for you to watch your precious child go through so much. You are right, you are not alone. I do not have a child with a heart problem, but do have one with a chronic illness. I can relate to you in that way. There is also a caregivers' and loved ones' forum where you can post for more support. You and your Destiny are in my prayers. God bless you both.

Joanne R's August 10 reply to Elaine WB's August 10, 2002 - Hi, Have you checked out the possibility of gout as a source of your foot and leg pain? You may need to have your potassium levels checked too. All of us have so many meds for the CHF that it is an eternal balancing act and the night pain can be hard to deal with. My doctor added allopurinol to my daily dose of meds and the pain has gone.

Victor R, August 12, 2002 - Hi, I have just had my checkup for CHF and have been on Coreg for one year. After my EKG my doc sent me to have an echo last year and my EF was 20%. Now it is 45% he has reduced my Coreg to 50mg a day and my zestril from 40mg to 20mg. He added a potassium supplement and considered reducing my Lasix from 80 to 40mg, which I talked him out of doing. I have also been taking 300mg of CoQ10 and 1000mg L-Carnitine and 1000mg magnesium a day. Does anyone have any idea of what has helped improve my EF so much within such a short period of time? Any comments would be helpful. Thanks.

Elaine WB, August 12, 2002 - Hi and thanks so much to everyone for the info. Part of my confusion is that I do have diabetic neuropathy in both feet, on the right leg up to the knee, on the left it extends up the hip and pelvic area. I am currently taking 25mg of amitriptyline for that and it has helped at night but the burning feet seem to be mostly in the day time. I have asked about potassium because before my CHF diagnosis I was taking potassium on a daily basis due to muscle cramps in my calves and arches of both feet. Amitriptyline has stopped that at night but I am not taking any potassium at all. My cardiologist says he does not want me to take it. I know about the gout being another source, but so far no blood work has revealed high enough levels of uric acid to know that's what it is. So I'm still not knowing!
     I know about the "hitting the wall" that Myrtle is talking about. I do so almost daily at some point. I jokingly tell my husband that "I will be in my office" when it does hit me. My office consists of my large sofa, some pillows and an herb bag for my eyes. That is the only thing I have found that relieves the overwhelming "tired" that comes whether I've done much or anything at all. I used to think it was my pills all kicking in at one time but thought I would eventually get used to that so I do not know what it is either. I just know that when it hits, it's either a choice (for a very short moment) to either lie down or fall down with an "I cant get up" feeling.
     The mental confusion you spoke of seems to always be present with me. There are times when I check to see what day it is and then within 5 minutes I have forgotten. I know my short-term memory has been affected by the stroke that I had on September 4, 2001, but sometimes it's ridiculous. For example, it seemed like Sunday to me all day Saturday. Even after discussing it with my husband, I still made the statement before going to bed last night, that I needed to get the coffee pot out of the dishwasher so I could set the clock for it to come on automatically so coffee would be made in the morning before my husband goes to work - only to be reminded by him one more time that it was not Sunday. It was Saturday, and he was not going to work in the morning. <lol> Does anyone have any ideas about this and how to fix it, or should I just keep laughing about it and going on? It's one of the few times that I really remind myself I am really not a little old lady yet, I'm only 56!
     Keep me and my family in your prayers. We all need them and I will do the same for everyone here. Thanks Jon, for being here for all of us. God knew I was gonna need a caretaker at some point in my life and I am so glad he picked you for your part!

Sherrell G, August 12, 2002 - Hi, I've been around for many years and now my story has changed. I received my new heart on August 3. Tomorrow I have my first biopsy and hopefully will leave the hospital. I look forward to sharing my experience with my heart friends.

Mel G's August 12 reply to Myrtle's August 10, 2002 - Hi Myrtle, I'm a 45 year old mother of 4 who has had CHF for 10 months, and am fairly well compensated. I find I "hit the wall" to the point where my legs pretty much buckle right under me. When I find a seat - at home, in the car, in a shop, on the beach or wherever - I just sit. It sometimes takes 30 minutes before I can move to get up again, and get going. I haven't yet been able to figure out why this happens. It seems unconnected with anything like excess fluid or too much exertion. I just seem to poop out quite easily, and it happens very quickly.
     I have another symptom which I wonder if others here have. If this happens to you, please let me know. When I wake up, I really hurt. I call it "the truck" because it feels as if I've been hit by a truck. It is very painful, all over. Every single muscle in my body has a feeling of bone-deep, total exhaustion. When I have mornings like this, it sometimes takes up to 60 minutes of effort to sit up or get out of bed. It's very frustrating! I need lots of toe wiggling and small movements and turning, while everything just seems to throb. Eventually it subsides enough for me to stand up and then get going. It is completely gone by the time I get back from the kitchen with a cup of tea. If I have a sleep in the afternoon (not often) it also happens when I wake up then. My cardiologist said he doesn't know what to make of it. Any thoughts out there? Thanks, as always.

Jon's August 12 reply to Mel G's August 12, 2002 - Hi Mel, This is just an idea but if anyone can watch you sleep for a few hours, it would be interesting to know if you move around in your sleep at all. Healthy people move around quite a bit in their sleep and I think we CHFers don't. I know I don't shift positions nearly as much as I used to and it causes me a great deal of soreness from sleeping a long time in one position. Just a thought, Jon.

Patrick, August 12, 2002 - Hi, Can anyone tell me if I have to pay income tax on my disability payments? I make just barely over $14,000 a year and I am single. As far as deductions go, I only have about $1200 a year in house payment interest along with about $1,000 a year in meds and doctors' visits, etc. I sure hope I don't have to pay because I'm just barely surviving as it is now. Thank you and God bless.

Tom S' August 12 reply to Patrick's August 12, 2002 - Hi, As far as I know Social Security Disability payments are tax free, at least that has been my experience for the past 6 years. In fact, it generally doesn't even show up under the income side of the ledger when I plug the figure into my annual Federal or State tax return program. Usually we are "owed" money back because we have 10 deductions, and a fair size house payment that is mostly interest. What is interesting is that because of the number of deductions, there is rarely any witholding tax taken out of my wife's paycheck other than for Medicare and SSI. So even with my SSD and her income we have not paid a dime in Federal or State tax in over 7 years.

Ben B's August 12 reply to Patrick's August 12, 2002 - Hi, I don't think you will have to pay. They take one-half your SSD, add it to your other income and if it is less than 25,000 I don't think you owe. Of course I would talk to a tax person, or at least get the book to be sure.

Derald's August 12 reply to Patrick's August 12, 2002 - Hi Patrick, It depends on where your disability payments are coming from. If you had a long term disability policy and you made the payments then the proceeds are non-taxable. If your employer paid the premiums then you have to pay taxes. If you mean Social Security, there is a formula in the 1040 instructions on how much (if any) of your benefits are taxable. I am not a tax accountant but that is my understanding.

Jon's August 12 reply to Patrick's August 12, 2002 - Hi Patrick, With your current income, it is probably not taxed. However, if your income is high enough, it does become taxable. My wife makes a good salary, and we file jointly. My SSD is taxed. See for more. Jon.

Bill C's August 12 reply to Mel G's August 12, 2002 - Hi everyone, Mel, I have been hit by your truck for the last 7 years and the docs have no answer. Jon's reply makes sense but I have taken as little as a 5 minute nap and got run over by the truck. <g> I can only tell you it doesn't get any easier with the truck or the exhaustion. On the other hand it seems not to progress if you are stable. My thought on the truck is that my mucles are not getting good blood flow when I fall asleep due to I don't know what. God bless and goodbye.

Tom S' August 12 reply to Mel G's August 12, 2002 - Hi, Hitting the wall seems to be something I do several times a day, and being wracked with continual pain is nothing new to me either. Since pain is relative to the sufferer, I am going to assume that you are referring to the muscle aches that are pretty close to the feeling one gets when they run a marathon. I have aches and pains that are similar to ones I used to get when I was a runner. Sometimes I get a poisoned-all-over feeling along with a light case of nausea. Usually I ascribe the condition to my low EF (15%) and go horizontal for as long as it takes to start feeling more energy. Sometimes all it takes is making dinner to wear me out, and if I get active at church and school events suddenly I am knocked out for up to two days.
     I guess that is the long answer for saying it is part of the CHF condition and one we all learn to adapt to. By the way I rarely take pain killers unless sleep becomes impossible because of the pain. Usually I just get distracted enough I forget about the pain.

Myrtle C's August 12 reply to Mel G's August 12, 2002 - Hi Mel and Elaine, I guess "hitting the wall" and being brain numb is just another one of those "little heart related" problems we must cope with until something better comes along. Thanks to you both for your replies. Hugs to you and may God bless us all.

Karen K's August 12 reply to Sherrell G's August 12, 2002 - Hi Sherrell, Congratulations on your "graduate" status. I believe you are the Sherrell who used to correspond with me. I am very fortunate. I haven't had my EF checked for several years but have changed from seeing an internist to participating in a heart failure clinic at the University of Iowa. I'm fortunate in that I have stayed fairly well compensated since being diagnosed in 1991, only requiring one hospitalization in all that time.
     When I changed from seeing an internist to the CHF clinic, they basically "tweaked" my meds but since I am so well compensated the nurse basically remarks on how nice it is to have someone who is "well" as a patient. I thank God frequently for allowing this.
     Mel, regarding the pain you experience when waking up, I agree with Jon. I sometimes feel like I've been run over by a truck but attribute it to having been tired enough that I didn't move much in my sleep. I also have scoliosis and degenerative disc disease, and my symptoms are generally always present first thing in the morning but abate throughout the day, depending on what my physical activity is.
     To be honest, there are days and sometimes weeks when I am quite surprised with what I've been able to accomplish. I feel God's presence in my life often as I shouldn't be able to do the things I do and maintain the activity level I do. My life is quite full. I work part time but am fortunate in that I'm allowed to be very flexible in the hours I work. I volunteer for our local domestic violence program and am a certified domestic violence advocate. This spring we moved my mother here from California. She is in a local nursing home and I visit her every other day along with taking her for appointments. She requires a wheelchair and it takes a lot on my part to lift it into the back of my little hatchback.
     Two years ago, my husband was diagnosed with MS. It is supposed to be relapsing remitting but he has really declined in physical ability and his cognitive functioning is a real challenge. Additionally, in my thinking he should be seeing a counselor. He gets quite frustrated with his lack of abilities and his frustration unfortunately turns to anger against me. He is not physically abusive but the emotional abuse can be overwhelming. He sometimes won't talk to me for a week at a time. Sorry for being so long-winded. I think I just needed a dumping place. I hope no one minds, Karen.
Jon's note: No problem at all - you should see a couple of vents I let loose on the loved ones' forum last week <g>

Jon, August 12, 2002 - Hi everyone, I have done a lot of research the past 3 weeks for my mom on supplements designed to improve mental function (cognitive ability) and memory, or at least to slow its decline. That research is why my mailings slowed down and page updates have been scarce - I went through hundreds of pages of information. The supplements that seem to have a track record of actually helping are gingko biloba, galantamine (also available as an FDA-approved Alzheimer's drug), bacopa monniera, and possible DMAE.
     If you want the Word documents I prepared for her, let me know and I'll make them available for download. E-mail me if you're interested. The documents include rewritten (in easier to read language) trial and study abstracts and more. Jon.

Judy's August 12 reply to Patrick's August 12, 2002 - Hi Patrick, Most of the others have given you the correct information regarding taxes. It depends on where the disability check is coming from, how much other income you have, and how much your spouse has. If you are single and have only $14,000 income, you probably will owe nothing. I am a tax preparer but this is of course very unofficial since I haven't seen any of your paper work. Whoever does your taxes will be glad to answer your question - even this time of year. This information is true for federal taxes - state taxes depend on the state you are living in. Good luck! If you need more help in January, let me know.

Myrtle C's August 12 reply to Karen K's August 12, 2002 - Hi Karen, I'm glad you're doing well. My concern is with your husband's response to his diagnoses. He sounds very angry with life and has some depression symptoms. I agree with you that he needs help for this. Having lived with depression a long time, I think he needs to see a psychiatrist who can prescribe medication to take the edge off his anger. This doesn't help his well being to be in the midst of depression, but it is certainly understandable.

Ian, August 14, 2002 - Hi everyone, This is my first message on this site having been told recently by my PCP that my left ventricle isn't working as it should. I'm a fit 47 year old English runner and this was something of a shock. Currently I don't have any symptoms of CHF but have been put on ACE inhibitors leading up to an angiogram (cath) this Friday. If anybody has anything encouraging to say, I'd be pleased to hear it!

David, August 14, 2002 - Hi, I have been reading the posts for 2 years. I have cardiomyopathy and congestive heart failure. My EF started at 17%, then went up to 24%. I had an echo yesterday so maybe it is better yet.
     I was wondering, is it pretty common to get other health problems because of our chf? In April I was diagnosed with type 2 diabetes. I think Coreg or my weakness brought diabetes on. The doctors don't think so since I am overweight and have diabetes in my family history. My cardiologist increased my Coreg to 50mg twice daily, and I do feel better, but now I have diabetes.
     For the people that have leg problems, the standard CHF meds do make gout worse. I had got before I was sick, then started having terrible attacks. I am on allopurinol now and it is much better. Also, eating cherries and strawberries helps gout. In me it can prevent attacks early on, or you can drink cherry juice. Maybe having diabetes will help me because I have to take care of myself better now. I walk a mile a day and sometimes more, and I do feel better. I eat a healthier diet since I can't have much sugar or salt. Thanks for this site Jon, and God bless you. David in Missouri.

Tracey, August 14, 2002 - Hi, I am suffering from CHF and am wondering if others are experiencing the sensation that everything seems to taste way too sweet? Also, cucumber, pineapple and other foods I once loved now even the smell makes me feel ill - and they just taste awful. With trying to cut out salt, it's difficult to eat enough when the food you liked before doesn't taste right. Any thoughts?

Maria, August 14, 2002 - Hi, Has anyone had experience with kidney stones? My husband takes Lasix, Coumadin, digoxin and Ultram. He has had two bouts of what I think are kidney stones. Does anyone know if these medications can cause this? Is reduced heart function causing this problem? Many thanks for any feedback. Take care all, Maria.

Tom S' August 14 reply to Tracey's August 14, 2002 - Hi, If "everything" tastes way too sweet, try eating "something" instead. <g> Now that the comedy routine is mercifully over, I guess I would have to ask you whether you were a smoker and if you recently quit? Quitting that nasty habit definitely will make things taste a whole lot more intense or different than you remembered prior to taking up the smoking habit.

Elaine WB's August 15 reply to Tracey's August 14, 2002 - Hi Tracey, I had to give up salt in 1970 when I was pregnant with my first child. I had toxemia with both pregnancies and have had hypertension ever since. I had a dietician tell me that I would get more flavor and replace some of the salty taste we all like, if I used wine to cook with. I use it to marinade my meat or just to add flavor to my vegetables and gravies. I just experimented with it for awhile till I finally got a taste level that would work for me and my family. The alcohol is removed by proper cooking (heat) process and just leaves the flavor. It has been working for me for all these years.
     I love my chicken breasts marinated in Sauvignon Blanc or the newer peach-flavored wines they make now. It keeps them from drying out and getting tough when you grill them. Some fruit juices are great! I use Ocean Spray Ruby Red Grapefruit juice (1/2 to 3/4 cup) to stem my cabbage and it gives it the best flavor. I also add it to pork dishes for the flavor. Most of the citrus juices and the fruit itself is great with most meat dishes. I guess maybe it's what they now call the flavonoids. I hope these suggestions put your brain in gear and you will enjoy your meals more.

Jack D, August 15, 2002 - Hi, I know most of you have been required to have a little blood drawn on occasion and many times there was really no reason for a doctor visit; but you had to see the doctor before the blood could be drawn.
     Well, I have been through the same thing. Make an appointment with the doc and wait for him to come in the little room and say hi, and then fill out the papers for the blood work. Now he knew the last time you were in that he was going to order this specific blood panel in so many weeks. So why didn't he just have the papers filled out so you could just visit the vampire? Because he wanted the cash! Well I missed my appointment to see my doc to get blood drawn. I knew exactly what it was going to be drawn for because he told me 7 weeks before.
     So I called his nurse and said, "Hey I am supposed to get blood drawn for this test so why can't I just pick up the papers, get it done and see the doc after the results come in?" She said that doctor so-and-so doesn't do things that way. I said, well why does he need to see me? Does it do any good for us to sit in the room and say hello, how's the kids, and then him fill out the paper and send me on my way? We don't really have anything to talk about until after my blood is tested. She said she would have to call me back. She called about 20 minutes later and said I could just pick up the paperwork any time after 8:00 AM and get the blood drawn and see the doc after the results come in.
     Hey, if every one of us could cut out one useless office visit every year, well, the docs don't need the money. The insurance may pay the whole thing, there may be a co-pay, or it may all come out of your pocket, but no matter where the money comes from this kind of baloney does nothing but increase the cost of health care for everybody. So snarl at 'em and make 'em do things the right way.

Jon's August 15 reply to Ian's August 14, 2002 - Hi Ian, Well, all I can do is relate my heart failure experience in brief. I was diagnosed in autumn of 1994 with an EF of 13%. I had been experiencing heart failure symptoms for a full year before that. So I've had the condition for at least 8 years and I'm sitting here typing this. <g> I guess that sort of sums it up - heart failure is not necessarily a death sentence or a harbinger of crippledom. It does come as a shock, especially when considering yourself physically fit. I was in the same boat.
     I am not healthy or "well" but I am certainly not dead yet either. Hang in there. The drug therapy is better, people are being diagnosed earlier in their illness before so much heart damage occurs, and there is better advice to be had on getting better all around - witness this site. CHF is now a part of your life and you can live with it - pretty well for most people, although not all. Jon.

Tom S, August 15, 2002 - Hi, It was the great Yogi Bera that nailed it when he said it seemed like "deja vous all over again." It seems like just about once a week I see a post from someone, generally first-time posters, asking for reassurances and comforting words. No matter how many times us relatively old folks post our thoughts and feelings on the burden of CHF and it's associated illnesses, there is someone who has just missed reading what may be the definitive post on the subject.
     Hope burns eternal in the human breast so it is only natural to slide into a state of denial early on and believe perhaps you will be the one that "recovers" from your condition, and perhaps through some miracle of medicine or God, you will. Most likely you won't. No amount of reassurance or words telling you that it's only a passing condition will make it so.
     Dealing with any disease or terminal condition is dealing with yourself. No one else can do it for you. Instead of dwelling on the condition or the disease, learn to live with it just like you do with a bad neighbor. It's irritating but much easier once you accept the fact you are going to live with it regardless of modern medicine or divine intervention.
     Keep in mind you only die once, but you live every day until you do. Live life to it's fullest no matter what is dealt you and you will find that inner peace you are seeking from others.

Walter K's August 15 reply to Tracey's August 14, 2002 - Hi Tracey, In a minority of people ACE inhibitors can slowly make food taste terrible. This happened to me. Prinzide made everything taste like it came from the ground of a barnyard. As soon as I told my CHF doc, she knew what it was and took me off the ACE inhibitor and replaced it with a beta-blocker (Toprol XL). She warned me that it would take a long time to get over the bad taste and she was right. It took months, but it is all gone now. I don't know if this is causing your problem - the "sweet" taste sure doesn't sound like it but if you are on an ACE inhibitor, ask about it. Walter K.

Ben B's August 15 reply to Ian's August 14, 2002 - Hi, First of all, you don't even have a definitive diagnosis. Wait until after your cath at least. If you do have cardiomyopathy, of course you have to accept it, but there are people here who have been "terminal" for more than 8 or 9 years. My father lived a full life with heart failure for over 20 years before an infection killed him.
     Believing you might have a chance to recover is not necessarily a state of denial. We have to keep a positive attitude. My own EF has improved from 10 to 15% to 40 to 45%, leading to the wonderful news I got today that my private insurance company wants to drop me, cutting off half my income. I am going to try to fight it, but in many ways I feel like I should at least take a chance on working, since I do actually feel a lot better. Still, I'd rather feel better as I do today.
     Everybody is different, and I for one will try to encourage people to hope for the best.

Tracey, August 15, 2002 - Hi everyone, A friend told me that Pick up Stix Chinese had some low sodium dishes so I visited their web site and saw that they do have a lot of dishes that are 200mg or less for a cup. I've since tried those dishes and had no problems. My EF is on the higher end, but I thought for those of you who miss Chinese it might be worth a taste. Their rice is made with no salt added to the water as well, so I just mix that up with a cup of whatever and it fills me up.
     Also, I'm still on my cheddar mission. I've contacted Kraft, Alpine Lace and Land o'Lakes, but none of them make a low sodium cheddar. I bought the regular Tilamook Cheddar because it would work sodium-wise with many of my recipes and discovered that I hated the taste of it. I used to love regular cheese and now can't stand it. I guess my senses are de-salted. Have a great weekend!

Roz, August 15, 2002 - Hi Mel, Elaine, Tom, Bill, et al, This bit of information may not be relevant to any of you poor victims of that pain-causing truck, but it can't hurt to check it out. My husband suffered for a number of really bad months with symptoms very similiar to those you all describe: muscle pain, fatigue, etc, which was worse after periods of inactivity. He doesn't have CHF but is in a-fib and was taking Lanoxin, Verapamil and Coumadin. When he finally described in detail his "hit by a truck" phenomenon, his doctor prescribed a 10mg dose of prednisone as a simple diagnostic tool for polymyalgia rheumatica. One dose and voila, symptoms disappeared. He is now on prednisone, and will probably have to stay on it for the next few years. I hope this information is helpful, and if not, I send you all a sympathetic hug for what you are going through.

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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