The paperwork never ends The Archives
March 1-15, 2004 Archive Index CHFpatients.com

Dale E 3-1     what helps nausea?
 
Melanie G 3-1     does anyone use topical anti-inflammatories?
 
Roxanne 3-1     is he too high-risk for cath?
 
Glenda 3-1     seek CHF doc in Hague
 
Vonda 3-1     seek suggestions & a prayer request
 
Sandy 3-1     has anyone heard of new valve repair?
 
Deborah V 3-1     seek CHFers in Seattle
 
Dina R 3-1     seek CRT pacer or ablation experiences
 
Linda's 3-2 reply to Sandy's 3-1     valve repair and more
 
Midge's 3-2 reply to Kim's 3-2     should I try an ARB?
 
Sheryl C's 3-2 reply to Dale E's 3-1     nausea possibilities
 
Vonda 3-2     my mom died, prayer request
 
Kim's 3-2 reply to Sheryl C's 2-27     Coreg & CHF situation
 
Carla 3-2     can I still get pregnant?
 
Dale E 3-3     thank you, everyone
 
Sheryl C's 3-3 reply to Kim's 3-2     coping, curious about others
 
Blanche's 3-3 reply to Vonda's 3-2     condolences
 
Patrick 3-3     seek others with viral cardiomyopathy
 
Katherine H 3-4     Corguard versus Coreg question
 
Jon's 3-4 reply to Katherine H's 3-4     Corguard versus Coreg
 
Patti D 3-5     seek definitions, pacer experiences
 
Dan S' 3-5 reply to Kim's 3-2     getting your energy back
 
Jack Hadland 3-5     does anyone else have these problems?
 
Kate 3-5     request to improve implanted device industry
 
Robert 3-5     does anyone take edecrin?
 
Jacky's 3-5 reply to Jack Hadland's 3-5     what happened to your thyroid?
 
Margaret D's 3-6 reply to Patti D's 3-5     reduced heart muscle movement
 
Valerie R's 3-6 reply to Jacky's 3-5     thyroid and amiodarone
 
Alexandra 3-6     working on a more positive attitude
 
Jacky's 3-6 reply to Valerie R's 3-6     thyroid and amiodarone
 
Jacky's 3-6 reply to Alexandra's 3-6     support, adjusting to CHF
 
Laurie P's 3-6 reply to Alexandra's 3-6     support, adjusting to CHF
 
Michelle's 3-6 reply to Alexandra's 3-6     support, resources
 
Patricia's 3-8 reply to Alexandra's 3-6     it can sure be tough
 
Blanche's 3-8 reply to Patti D's 3-5     got a pacer/ICD
 
Sheryl C's 3-8 reply to Alexandra's 3-6     suggestions
 
Erin 3-8     why a different beta-blocker
 
Craig B 3-8     seek angina experiences
 
Katherine H's 3-8 reply to Patti D's 3-5     CRT pacer experience
 
June's 3-8 reply to Patrick's 3-3     diagnosis & improvement experience
 
James' 3-9 reply to Alexandra's 3-6     misunderstood CHF and more
 
James 3-9     seek path to becoming herbalist
 
Evelyn 3-9     tight bra straps?
 
Evelyn's 3-10 reply to Alexandra's 3-6     you're not alone
 
Oscar 3-10     seek options for elderly grandfather
 
Andy Ps 3-10 reply to Deborah V's 3-1     any advice appreciated & more
 
Vicki J 3-10     seek diabetes/Coreg/weight loss experiences
 
Jon's 3-10 reply to Vicki J's 3-10     yes
 
Evelyn 3-10     update, EF improvement
 
Kate 3-10     beating that snack craving
 
Sheryl C's 3-10 reply to Vicki J's 3-10     and to Evelyn
 
Tom Campbell 3-10     how do you live with this fatigue & more
 
Susie O's 3-10 reply to Evelyn's 3-9     tightening bra straps
 
Ruthie A's 3-10 reply to Vicki J's 3-10     low carb diet options
 
Ruthie A 3-10     CHF specialist is critical
 
Jack D's 3-10 reply to Vicki J's 3-10     no diets, make life style changes & more
 
Tony 3-10     chemical exposure experience - anyone else?
 
Tom S' 3-11 reply to Tom Campbell's 3-10     coping with it all
 
Mike 3-11     seek Atkins and Coumadin experiences
 
Giorg 3-11     statins & dilated cardiomyopathy
 
Craig's 3-11 reply to Kate's 3-10     chips & frozen soy beans
 
Joyce 3-11     does anyone get jittery, shaky?
 
Jack D's 3-11 reply to Craig's 3-11     alternative to chips is chips
 
Kate's 3-11 reply to Craig's 3-11     veggies, fruit and chips
 
Vicki J's 3-11 reply to Sheryl C's 3-10     carbs, insulin, diabetes
 
Sandy 3-11     update after visit to doctor's
 
Vicki J 3-11     thanks Ruthie & Jack, Coreg
 
Craig B's 3-12 reply to Kate's 3-11     fruits, veggies, and chips
 
Beckie Hanks 3-12     South Beach Diet question
 
Valerie R's 3-12 reply to Jack D's 3-11     potato chips & more
 
Janet 3-13     why should I stay on meds?
 
Jon's 3-13 reply to Janet's 3-13     staying on meds
 
Susan's 3-13 reply to Giorg's 3-11     what is this about statins?
 
Lori K 3-13     low sodium food sources
 
Sheryl C 3-13     food issues
 
Jon 3-15     oops
 
Pat R's 3-15 reply to Jon's 3-13     I am successfully off meds
 
Jon's 3-15 reply to Pat R's 3-15     is it worth the risk?
 
Tom Campbell 3-15     how do you judge your activity capacity?
 
Steve 3-15     has anyone won an SSD case like this?
 


Dale E, March 1, 2004 - Hi, My dad has CHF and is constantly battling fluid retention (along with everyone else), but he also battles nausea daily. Is there anything that anyone takes to help with nausea? He would feel really pretty comfortable if it wasn't for the nausea, which basically makes life miserable at times. Thanks for the help. God bless, Dale E. Homecapitaldale@hotmail.com


Melanie G, March 1, 2004 - Hi everyone, I haven't had too much trouble with edema and take Aldactone (50mg/day) and Lasix (as needed) as part of my regular cardiac meds. I haven't taken any NSAID since CHF diagnosis, but had a physiotherapist recommend a "topical Voltaren" for long-standing wrist tendon/muscle injury with inflammation. The pharmacist told me that the amount of NSAID absorbed is very, very small, but couldn't comment on whether that would have any effect on my CHF or edema.
     Does anyone have any experience with these types of topical muscle relief? Thanks. Wishes for good health to you all. falmouth@bigpond.com


Roxanne, March 1, 2004 - Hi, My partner had a major heart attack January 20 and spent a week in ICU with pneumonia, bronchitis and congestive heart failure. He's also diabetic. The nurse said his enzyme levels were the highest she had ever seen, whatever than means!
     Over a month later, we have the diabetes in pretty good control, pneumonia is gone, but the doctors have been adjusting meds all this time. His white blood count is only 1.8, he has blood pressure of about 90/60, which they say is very low, and his platelet count is only 36,000. He gets around okay but is out of breath with the slightest exertion.
     I assume they have not done a heart cath procedure because of too many risk factors. Am I right? Is there a danger in waiting to do any surgery or are the risks too high? Any opinions would be welcome. It seems as if we're in limbo. roxanne@countrygrapevine.com


Glenda, March 1, 2004 - Hello, I am new to posting on this site. I live in China as an expat with CHF. I make frequent trips back to Houston for meds. I will be moving to Hague soon. Does anyone have have info on CHF specialists there? gnajari2002@yahoo.com


Vonda, March 1, 2004 - Hi, I need help! My mom has been in the hospital for the first time in 2 years with CHF. She initially went in having problems with her liver. Her symptoms were nausea and weakness from not eating, and SOB. After running some tests they came to the conclusion that one or some of her meds were causing it.
     We thought she would be home in a couple of days but she got worse after they started running steroids through her IV. Her potassium was too high so they gave her something to help pass it through her bowels. Then she started having bad stomach cramps. Now her legs and ankles are swollen and she is short of breath again. I feel like bringing her home to get her well.
     I failed to mention that she also has COPD. They are trying to treat it and causing her CHF to be worsen. Too many doctors, I guess. Please pray with me for my mom. She is 58 years old and a Christian lady.
     I feel helpless because the hospital staff looks at me like I am crazy when I tell them to please not give her anymore meds that causes her to retain fluid. Jon, I know you are not a doctor but experience is far better and I respect your opinion. Your site has helped me tremendously. jmgandme@aol.com


Sandy, March 1, 2004 - Hi, My daughter (a nurse) just called and was telling me about a new procedure at the Mayo Clinic. They repair the mitral valve without having to do open heart surgery and people's heart are getting much better. Has anyone heard of this? shallacy@mo-net.com


Deborah V, March 1, 2004 - Hi, This is my first post on this message board. So, I am a newbie. I was diagnosed with severe left sided cardiomyopathy and CHF about a year ago. I had an EF on between 10 and 20% with a variety of other problems. I had no idea I was that sick - I thought I had a little cough. I also have LBBB and have a bi-ventricular pacemaker.
     My EF is now up to 47% and my heart size is now normal. I've returned to work as a counselor for developmentally disabled people. I had problems with lightheadedness and fatigue. My diuretic was decreased and I am significantly better. I still have overwhelming problems with fatigue, slowness and isolation (no energy to be anywhere or do anything but work and sleep).
     I live in Seattle and would love to hear from anybody with these issues. It had been the most frightening walk of my life. Deb. deborahvalentne@hotmail.com


Dina R, March 1, 2004 - Hello, I have not posted in a long time. I read all the posts on both sites tonight. My husband is now 35 and was diagnosed with IDCM and CHF December of 1998. He got a pacemaker/ICD in April of 1999. He takes Coreg 50mg, Lasix 80mg, Avapro 150mg, Lanoxin 0.125mg, spironolactone 25mg, Coumadin 10mg, Valium as needed, and Ambien as needed. He did take amiodarone 800mg daily for 3 years. He had AV node ablation September of 2002 and now his heart is set to beat at 70.
     This Monday he goes in to have a third wire placed to hopefully make him feel more energetic. He is on SSD and hates not being able to work and being at home. If anyone is home and bored, and would like to e-mail him, feel free. It may give him something to do while I am at work all day.
     I have never read anyone else here having a third wire placed into the pacemaker or of anyone having an AV nodal ablation. We'd be interested in hearing any of your experiences with this. djhrice@sbcglobal.net


Linda's March 2 reply to Sandy's March 1, 2004 - Hi Sandy, I certainly hope that Mayo is doing this type of mitral repair, I do have a leaky one. Please let us know when you hear more. Jon, I have not received any mailings for awhile. Am I still on the list? Linda, age 64, EF 25%. lnoline@hotmail.com
 
Jon's note: The last one was on mitral valve regurgitation and mortality in heart failure patients. Did you receive that one?


Midge's March 2 reply to Kim's February 26, 2004 - Hi, I too have had a bad cough with Lisinopril for 3 years. Then my CHF doc switched me to Diovan to help with the cough. I had insomnia with that and couldn't take it. I then went back on the lisinopril and now am coughing again. Now the doc says to try Cozaar. Is it medically better just to put up with the cough and stay with the ACE or try the ARB (cozaar)? Is ACE always better than an ARB? midgeric@msn.com
 
Jon's note: If it were me, I would try the ARB. The literature supports the switch when cough is present.


Sheryl C's March 2 reply to Dale E's March 1, 2004 - Hi, There are several things that can be causing your dad's nausea: His medications (Jon's note - ACE inhibitors can cause this - see www.chfpatients.com/ace.htm#visceral_angiodema), low or high potassium, digoxin toxicity, or fluid in his abdomen. He needs to work with his doctor to find the cause. He should take all his meds except for Lasix with food. I take Prevacid to help my nausea so that med or one of the drugs like it might help. I hope this helps, Sheryl C. cvprehab@hotmail.com


Vonda, March 2, 2004 - Hi, This is just to let you all know that my mom passed away last night. Please pray for my family at this time. jmgandme@aol.com


Kim's March 2 reply to Sheryl C's February 27, 2004 - Hi, I have always had low blood pressure and my Coreg was down to 3.125mg BID and Zestril 5mg; that's why I have a pacemaker. Before getting CHF I was on meds to increase my blood pressure. I am starting to feel a little better now, with SOB once in awhile. My blood pressure is up to 98/65, but my heart rate has gone up. I am on 40mg Lasix but can take 80mg - he lets me manage that. I trust my doctor, I just get scared.
     My EF went up, (I'm 37 so this was quite a shock) but I still feel bad. I was hoping that I would feel better and my energy level would start to improve. This CHF can really affect your quality of life and I get frustrated with the whole thing sometimes. I see my EP tomorrow and I will ask him what he thinks about the Coreg. Thanks for the advice. Kim. kwilczewski@aol.com


Carla, March 2, 2004 - Hello, I'm new to this site and very thankful to have found it. I've recently been diagnosed with dilated cardiomyopathy with an EF of 25%. I have never had any children and have recently gotten married. My OB/GYN and cardio doctor are telling me and my husband not to even think about pregnancy. Plus, I'm the magical age of 35, which sends up all kinds of red flags! I'm on Coreg, Vasotec, Lasix and an aspirin a day. Is all hope for children gone? I feel so good and continue to have faith that I will recover from this. carla@cnbt.com


Dale E, March 3, 2004 - Hi, I just wanted to drop a line to say how helpful everyone is on this web site. It seems every time I have a question about my dad's situation everyone who has info is willing to help. This site is a real blessing, thanks to everyone who e-mailed and posted on the board responding to my dad's nausea question. God bless. Dale. Homecapitaldale@hotmail.com


Sheryl C's March 3 reply to Kim's March 2, 2004 - Hi Kim, This is a very frustrating disease. When you have good days it is so encouraging and you think, "Hey, I'm getting better!" So you try and do just a little more and slam, you have some bad days. The emotional rollercoaster ride alone is enough to deal with.
     As for the fear factor, discuss it with someone. It is just a part of our life and you have to find a way to handle it. To be realistic, I have all my "things" in order, but I basically use denial when my fear level gets too high. I'd be interested to see how other's handle their fear. Sheryl C. cvprehab@hotmail.com


Blanche's March 3 reply to Vonda's March 2, 2004 - Hi, I am so sorry to hear of your mom's passing. You and yours are in my prayers. bna104@msn.com


Patrick, March 3, 2004 - Hi, I am a 36 year old male firefighter/paramedic. I had flu-like symptoms 1-1/2 years ago. It turned out that I acquired the coxsackie-B virus. In turn, this led to dilated cardiomyopathy. My diagnosed EF was 20%. I've always been very health conscious and strong. Needless to say, I was unable to continue my professional level as a firefighter and have since been assigned a desk job by my city. My current EF is 34% and I take Coreg (12mg BID) and Altace (10mg). I've felt everything from sluggish and run down, to depressed. I'm looking for anyone who had ever been diagnosed with viral cardiomyopathy. patnkim@bellsouth.net
 
Jon's note: Don't forget to browse www.chfpatients.com/biosgate2.htm for "DCM" entries.


Katherine H, March 4, 2004 - Hi, A question about Coreg that came up at another site: Are Corgard and Coreg the same thing? I have been told they are but from reading it does not appear to be the case - they are simply both beta-blockers. How are they different, if at all? kholian@msn.com


Jon's March 4 reply to Katherine H's March 4, 2004 - Hi Katherine, Corguard is nadolol, while Coreg is carvedilol - not the same drug, although both are non-selective beta-blockers. Corguard is not approved for heart failure treatment in the USA although it can be presribed "off-label" to CHFers if a doctor wants a patient to use it. As far as I know, nadolol has none of the "added" effects that carvedilol possesses, such as alpha-1 receptor blocking, anti-oxidant activity, etc. Nadolol is excreted almost entirely by the kidneys, so it is easier on the liver but harder on the kidneys. Nadolol is taken once a day and Coreg is taken twice a day. That's as much as I know off-hand. Jon.


Vicki J's March 5 reply to Patrick's March 3, 2004 - Hi Patrick, My father got a virus when he went to Switzerland and his doctor thought it was the flu so he treated it as such. Daddy just kept on coughing so we took him to a cardiologist and they told him he had viral cardiomypathy. He died in 1980 with CHF. They didn't have the knowledge that they do now.
     I've really been researching the familial gene being passed to family members since I have CHF but no clogged arteries. I had bronchitis and the virus moved down and damaged my heart, I was only 36 when I developed it. I was used to walking 3 miles a day, riding horses and being fairly active. Daddy had 13 in his family and I was talking to one of his sisters and she mentioned that about 5 or 6 had died with CHF.
     I found an interesting site that you might enjoy. According to it we have a 50/50 chance of passing the gene on to our children. I know it's too late for me but hopefully they can develop something that would help my son be resistant to getting it. E-mail me if you'd like more info. The site is: http://www.fdc.to/. They are doing a study of this and their 5 year grant was just extended. I hope this helps. vj6464@aol.com


Patti D, March 5, 2004 - Hi, I haven't written in several years because I'm ashamed to admit I was feeling good and able to work full-time. Unfortunately, I am no longer feeling very well and my echo done on 2/23/2004 estimates my EF to be back down to 10%. I have been taking an ARB, beta-blocker, diuretic, and Lanoxin since diagnosis of IDCM almost 4 years ago. I was 44 years old at diagnosis. My cardiologist, who I like very much, has recommended that I have a pacemaker/defibrillator implanted. I forgot to mention that I also have LBBB. The echo results from 2/23/2004 state that my left ventricle is severely dilated (LVIDd is 7 cm and LVIDs is 6.2 cm) and there is "severe global hypokinesis with anteroseptal akinesis and apical dyskinesis." I know this is a long post but for those of you who have read it all, I'm wondering if any of you know what hypokinesis, akinesis, and dyskinesis mean. Also, if anyone has had one of the 3-lead (CRT) pacemakers implanted, I would really like to know if it made any difference in how you feel. Thanks for reading all this and have a great day. Patti. pajamapat55@aol.com
 
Jon's note: I don't think akinesis and dyskenesis are quite the proper terms, but I'm not a doctor. They all indicate reduced motion/function.


Dan S' March 5 reply to Kim's March 2, 2004 - Hi Kim, Don't worry. Your energy level will be the last thing to show up. EF does not always equate to energy, especially if EF is still below normal. Normal is the only guarantee of some energy returning. Hopefully, the closer it gets to normal the sooner you will feel the difference. Coreg made my blood pressure drop very, very low. Fluid retention will cause you to lose energy also. The extra weight does that to you. Weigh yourself every day to determine if you should up your Lasix. The scale is our friend these days.
     My EF is in the normal range. I was 36 when this all hit, now I am 39. I have been weaned off most of the meds and even Lasix is gone. I still weigh myself every day and if I see a couple of pounds show up out of the blue I take 20mg of Lasix. Like your doctor, mine says it was okay to take one occassionally if warranted. He does not want any relapses.
     Hang in there. Over time if you continue to improve you will get your energy back but it is a slow process. One day you will just notice you aren't as tired as you used to be. cavalier_1@msn.com


Jack Hadland, March 5, 2004 - Hi, I'm a 69 year old English guy with CHF. I've been bypassed, gotten an ICD fitted, had my thyroid burnt out by amiodarone, and am now having problems with furosemide. Has anyone had these problems and overcome them, or does anyone live with them? If so, please advise. The UK is years behind you guys, both in technology and attitude to our health problems. Keep up the good work. Jack. j.hadland2@ntlworld.com


Kate, March 5, 2004 - Hi, I suffered significant misery after receiving a defective ICD. I am requesting that everyone please visit a page of Good Housekeeping Magazine and send the e-mail requested there. It is an article dealing with defective implants: http://magazines.ivillage.com/goodhousekeeping/print/0,,615788,00.html. It is important that more be done to oversee the production and recall, when required, of these devices. Sending an e-mail from Good Housekeeping may make a difference. Many of you will someday be faced with the decision to receive an ICD. If we work to make these devices safer today, we will all benefit tomorrow. Thank you. Kate. tothymecottage@frontiernet.net


Robert, March 5, 2004 - Good day, I am seeking information from anyone with edecrin experience. I am taking this med and throwing up a lot. Any info would be appreciated. hawkdog86@aol.com


Jacky's March 5 reply to Jack Hadland's March 5, 2004 - Hi, The phrase "thyroid burnt out by amiodarone" scared me. What exactly happened? I know amiodarone (Cordarone) can affect the thyroid but all that was needed im my case was a slight increase in Synthroid! jackymwb@earthlink.net


Margaret D's March 6 reply to Patti D's March 5, 2004 - Hi Patti, Global hypokinesis means the entire heart muscle is not contracting normally. Akinesis means that one area is not moving at all, and the dyskinetic area is not contracting correctly. Akinesia means without energy and dyskinesia would be abnormal energy. I have global hypokinesis, but I don't have a biventricular pacer. I understand that it can dramatically help some people and does help most people, but there are always exceptions. Good luck! mdavis10@tampabay.rr.com


Valerie R's March 6 reply to Jacky's March 5, 2004 - Hi Jacky, It doesn't make sense to me that you speak of an "increase" in synthroid. What were you taking it for originally?
     Jack, I go to an endocrinologist on Thursday of next week because amiodarone is affecting my thyroid and making it underactive. I'm not sure what "burned out" means either. I also have an ICD and pacer, which I live with well, getting it checked every 6 months. I see a transplant team every 6 months but so far I have not been listed and am trying my best to keep it that way! vgrogers@aol.com


Alexandra, March 6, 2004 - Hi, I am a 34 year old mother of Jake, who is 3. I was born with a heart defect, had open-heart surgery at 10 and all was well until 2002. I had a dual lead pacer implanted on my right side (who knows why?) and have had all the same symptoms and issues that all of you are having.
     I was officially diagnosed with CHF on Super Bowl Sunday (had to cancel the party). I take lots of meds and am getting a biventricular pacemaker 3/30. The doc says it is much harder from the right and he may have to close and reschedule to implant on my left with all 3 leads, so I will have 2 pacers, just one won't be turned on.
     I was a mess for about a week, but I am slowly getting a more positive outlook. I guess what I am trying to say is that I really need to talk with people who understand what I am feeling, physically and emotionally. My husband and grandmother do, but the rest of my family just thinks I am lazy and basically can just "fight it" or "force myself to get better." I wish it were that easy. I am not afraid to die. I am afraid to leave my son.
     I want to know that what I am feeling is okay, because I don't get too much support. I wish my sisters could live one day like mine and remember the words my doctor said, "I can't tell you if you will live a year or ten years, I hope it is ten and we will do everything we can to help you." I can quote others, but you get the idea. Those are harsh words to hear. I am Catholic, I have always believed in God, but I am not a big church goer. I have prayed every day of my life, for one reason or another. I just hope my prayers for myself this time are answered. I am sorry if I am going on too long. I have insomnia almost every night. I will pray for all of you tonight. Good night and tomorrow will be a fresh, new day. jakethesnake56@aol.com


Jacky's March 6 reply to Valerie R's March 6, 2004 - Hi, I have been mildly hypothyroid for about 30 years with a stable Synthroid dose until I was put on amiodarone 3 years ago. Amiodarone has been a wonder drug for me! jackymwb@earthlink.net


Jacky's March 6 reply to Alexandra's March 6, 2004 - Hi, This is the right place to come. I know you will get replies from people your own age but just wanted to tell you when I was first diagnosed 4 years ago I felt the same way people are treating you. I felt I was just being lazy and should snap out of it. It took me awhile to realize this was not the case.
     I am lucky that I am older (old!) so I can adapt my way of life to how I feel that day. As long as your family understands and support you, that is what matters. I have learned not to worry about what other people think. Having a 3 year old must make life even more difficult, but what a blessing! Take care. jackymwb@earthlink.net


Laurie P's March 6 reply to Alexandra's March 6, 2004 - Hi, My name is Laurie and I am 37. I was diagnosed with dilated cardiomyopathy and CHF in November of 2003. I too have children: Bobbie, age 6; Larry, age 5; and Destinie, age 4. I can relate to your feelings about what the future might hold. I spent many a night laying in bed thinking about them being without me.
     It was until I found this site that I felt that way. If you read all the medical stuff you find on the Internet, you will continue to be afraid. I'm not saying not to read it - it helps to be fully informed about your condition - but it will help you a great deal if you continue to read the posts here and the info on Jon's site. It is real life and real people experiencing the same kind of things. Reading the posts here and Jon's experience, has made me feel completely different about my condition. Live life for today and make tomorrow better yet!
     If you have read any posts, you will see that many people have heart conditions and have lived many years with them. I know it's hard, especially while having children, but live life for them. Think positive and take care of yourself. And if you want a good place to be, this is it! Take care, Laurie. lrp3lmp@aol.com


Michelle's March 6 reply to Alexandra's March 6, 2004 - Hi Alexandra, I was also born with a heart defect, Transposition, and have CHF because of that. I am 27 and I was diagnosed with CHF at age 16. I have been symptomatic for over a year.
     I went through what you're going through and to some degree, I still am going through it. Because you have a heart defect, I suggest that you visit the Adult Congenital Heart Association at www.achaheart.org if you haven't already. They provide great support and like Jon, advocate learning everything you can about your illness(es). This is a great place for CHF support but personally, I don't get as much support here as I do at ACHA. Most people here weren't born with severe heart defects like I was and in general, the patients here have issues that are very different from mine.
     My advice is to learn everything you possibly can about your condition, meds, etc. For those people who tell you to "get over it" send them here or fight with personalized education. Emphasize how your heart is different from theirs. I have a friend who left her medical records out where she knew her family would read them, and they never bothered her about her condition again. She was pretty desperate for positive support at the time and she took drastic measures, but it worked.
     You didn't go on too long in your post. Most of us have been where you are right now. Having CHF is hard, but you can live a good quality of life with the right support. Hang in there! mianders@hotmail.com


Patricia's March 8 reply to Alexandra's March 6, 2004 - Hi Alexandria, I have CHF and IDCM. I worry every day about leaving my children. I have also had problems convincing others that I am sick. It was worse when I was first diagnosed 3 years ago at the age of 40. Last year my doctor was away, so I went to the ER with palpitations, shortness of breath and chest pain. From the time I left my house to the time I was back in my driveway was a total of 40 minutes. They quickly diagnosed me with anxiety and tried to get me to take Xanax, which I refused. I went to my cardiologist the following week and found out that my EF had dropped a lot and I was "in" CHF.
     Not to mention when I have to take a day off of work when I "look fine." It's so frustrating. In the beginning I was terrified, but thanks to this web site I am much more informed. There are days that things get to me but I just go with it and know that I am not alone, and there are lots of people here to talk to. I have finally learned that I know how I feel, and I don't let what anyone else says bother me. I take things one day at a time. Please feel free to e-mail me any time. I am up late a lot also. Patricia. pgp24815@aol.com


Blanche's March 8 reply to Patti D's March 5, 2004 - Hi Pattie, I am older than you but with similar problems and treatment. I had a biventricular pacemaker/defibrillator implanted in July and have benefitted enormously from it, though it took about 6 weeks to notice a real difference. Good luck. bna104@msn.com


Sheryl C's March 8 reply to Alexandra's March 6, 2004 - Hi Alexandra, You may have tried this but if not, do so. Ask your family to read The Manual on this site, then make a copy of the expected symptoms at the bottom of The Manual, sit your family down and read the pages to them. Explain how you feel each day. Tell them about how tired you feel. When you are having a bad day, ask for help. Or if you are like me, give them fair warning. I tend to get a bit testy on days I don't feel well.
     Try and not dwell on the dying part. This will get easier to do as time goes by. I can't imagine having a 3 year old to keep up with. Bless your heart! My sister is also pretty blasé about my disease and about how I feel. Relationships with sisters are complicated, to say the least. Sometimes with each other, I don't think we grew up emotionally. I'm 54 and am still mad because in grade school she wore my new hat before I did. Get over it Sheryl! Keep your mind as positive as possible. Good luck. Sheryl C. cvprehab@hotmail.com


Erin, March 8, 2004 - Hi, I'm interested in why a doctor would prescribe a different beta-blocker for a person with CHF rather than Coreg. I was diagnosed with CHF and DCM, also moderate to severe (3+) mitral valve regurgitation, and was placed on Coreg. I got up to the target dose (25 mg twice a day) and then went into the hospital for surgery to repair my mitral valve, which was successful. I have been off Coreg and on lopressor since then, about a month. My cardiologist was insistent that Coreg was the drug for CHF. I don't see him again till later this month.
     Nobody has explained yet why I was switched to the other beta-blocker. Should I ask them to put me back on Coreg? I've been told my EF since the surgery is up to 45%, from somewhere around 30 to 35%, and that the regurgitation has been stopped. einne@aol.com
 
Jon's note: I must have missed something - who switched you to a different beta-blocker?


Craig B, March 8, 2004 - Hi guys, I have just been reading a bit about angina. As I have IDCM, I have had ongoing treatments and medications for my heart problems. After a recent visit to Club Med (2 months ago) for the first time, I now have anginine tablets to take, which dissolve under the tongue. I find that sometimes my heart "aches" seem to last way longer than the few minutes an angina attack is supposed to last. The pain level or discomfort, on a 1 to 10 scale is say 2. I have read that heart attack can be iminent if angina continues. Does anyone else have a constant pain in the heart/chest area - that even anginine tabs won't fix?
     I have been to the hospital on these occasions: 1st time over 2 years ago diagnosed with IDCM and in for a week; 2nd time 2 months ago and in for 4 days with edema, chest infection, fluid build up; 3rd time 2 days later and in for 6 hours; 4th time 4 weeks later and in overnight. The thing is I don't want to keep calling an ambulance every time my chest hurts, but I also don't want to have a heart attack and die. Any words of wisdom, people? Regards, Craig. bayce@optusnet.com.au


Katherine H's March 8 reply to Patti D's March 5, 2004 - Hi Patti, I had an In-Sync biventricular pacing device implanted 9/6/02 and then had to have it moved in 2/03 because it was starting to cause a frozen shoulder. I would go through the entire process again in a heart beat. I had a Right Bundle Branch Block, long QRS interval, and a heart rate usually in the 40s and 50s due to medication. I was in class 3 heart failure. I can't believe what a difference the device has made for me. I know it has not worked well for some, but for me it has literally been a godsend. Good luck and if you have any questions, feel free to e-mail me. kholian@msn.com


June's March 8 reply to Patrick's March 3, 2004 - Hi Patrick, I am a 53 year old female that was diagnosed last year with cardiomyopathy. It took awhile for the diagnosis because when I went to the doctor and walk-in clinic, they thought it was asthma. I was given all kinds of meds for that. When I could not lie down another night without breathing well, I went to the emergency room. By that time I was pretty badly off - confused, trouble breathing, and my legs and feet were very swollen. I was admitted and was found to have an of 15%. My last echo showed I have improved to 35%. I am on Coreg, digitec, Lasix, potassium, lisinopril, Coumadin, and amiodarone. I hope you continue to improve. June from Florida. chavisj@tampabay.rr.com


James' March 9 reply to Alexandra's March 6, 2004 - Hi, As you know or will discover from learning about it, one of CHF's more visible symptoms is fatigue. There are good days and there are bad days, and sometimes there are even worse days. It's something that most of us will live with for the rest of our lives.
     I am about to turn 35. I was formally diagnosed with CHF about 2 years back although we've been able to trace the start back an additional 2 to 3 years. I lived on stress - I ate it for breakfast, lunch, supper, and as a midnight snack. Unlike many, I actually enjoyed it. I thrived under stress. I would work 18 hour days, sleep 2 to 4 hours a night and those who know me have always been amazed at the amount of time I spend "doing" things.
     When I was diagnosed, my cardiologist began the standard regime of medications: ACE inhibitor switched to ARB (Cozaar) when I had the cough, Coreg, and furosemide. My blood pressure responded to the meds but that was it - my CHF worsened. I also have an LBBB as well. My EF was down to 20 to 25%, my QRS interval was 148, and my SOB and fatigue were increasing. None of these were good signs. As the condition progressed, it was decided I should get a biventricular pacer (CRT) and I did on 10/31/2003. My last echo, 6 weeks after the pacer was installed, showed a 5 to 10% improvement in EF and a recent visit to the electrocardiologist's office says the pacer's still doing its thing.
     As a result of the onset of this condition, I have been forced to make drastic changes in every aspect of my life style. I can no longer handle stress like I used to, it does not take much to fatigue me. Heavy emotional stress (read: family) can put me down for a day. My diet is entirely different: I eat fresh foods almost exclusively, scrutinize labels, restrict fluid intake, went from about 9000mg a day of sodium to 2000mg or less each day, bake my own bread (got several great recipes for bread machines), utilize certain herbal and supplement remedies, and rarely if ever eat out.
     One of the worst things for me is the fatigue. I can no longer work. Shortly before my condition fell into a steep decline, I accepted a position in another city that was a very promising step forward in my career. That fell through and when I returned it was with no job and no prospects. After all, how do you explain to an employer that at any given time you might need to just sit down for half an hour and do nothing or maybe even take a day or two off every month? I've not filed for SSD yet but it is on the list of things to do in the next month as other matters are resolved. Naturally, financial ruin set in and we're preparing to rebuild.
     My family, although understanding on the surface, has been a challenge. When cooking family dinners I frequently heard, "Oh, we only sprinkled a little salt in it." After awhile I suggested I do the cooking and I would only sprinkle a little arsenic over it. <g> This has of course become a new family tease. When I asked for help to complete needed gardening and outside home improvement tasks, it took 6 months to finally get help and then I spent the entire listening to complaints. At one point, it was suggested I take care of one of my sibling's child's needs as she was more needed since she was "an able bodied worker." I have been accused of laziness and a lack of motivation or ambition by those around me too.
     My response to external influences is first I tell them to take a hike (usually with more colorful metaphors <g>) and then if they're worth it, I'll take the time to educate. Even still, it's very difficult for others to really and truly understand what we feel and experience. The most loving and supportive family members can only begin to guess what we're going through.
     The way I've dealt with this issue in family members is by sending them to this site and others, forwarding articles, raising issues and encouraging them to do some Yahoo searches. If they care, they'll at least make a cursory effort and there's so much information out there that they'll quickly be overwhelmed and inevitably start to come around.
     All I can say is that it takes time and patience to bring some folks around. Others will never come around because they cannot see beyond the obvious external to the hidden internal. You cannot let them get to you so push beyond these individuals and move on.
     Hang in there and stay tough. Take solace in the fellowship of others such as those who frequent this message board. Remember: You can either choose to live your life full of anxiety over what others think and focus on all the negatives in your life or you can choose to live your life, build on what you have, and bounce when you get knocked down. Personally, I've always done the latter and I've no intentions of doing things any differently just because my ticker's got some issues. ;-)
     If I can be of any assistance to anyone or someone just wants to chat, feel free to catch me offline at my e-mail address. jnj@spamcop.net


James, March 9, 2004 - Hi, Although somewhat off-topic here, I was hoping to get some advice on naturopaths and herbalists. In short, I'd like to formalize my knowledge base and become one. Since many of you have naturopaths and herbalists that assist you on a regular basis, I was hoping someone here might have some suggestions on how one goes about becoming one (or could ask theirs for advice). Thanks! jnj@spamcop.net


Evelyn, March 9, 2004 - Hi, To the ladies, do your bra straps get tighter and uncomfortable (more than usual) as the day progresses? It always seems to me that mine does and I was wondering if anyone else has this problem? I know that I carry my extra fluid around the top of my abdomen but I don't think that is the problem. I hope you're all having a good day. Take Care, Ev. eveysue@hotmail.com


Evelyn's March 10 reply to Alexandra's March 6, 2004 - Hi, I'm 38 years young. I have DCM and CHF I was diagnosed last year about the same time I became a grandma for the first time. Double kudos to you on keeping up with the 3 year old, it must not be easy. I know whenever I have my grandson for the day I'm usually exhausted and go to bed really early.
     On the subject of family (I've wished for being a orphan and only child), if it wasn't for my patience and knowledge of those people who consider themselves related to me, I would be a hermit. My mom and dad both think I'm just sick and with the meds everything it will go away. Then there are my siblings - let's just say thank goodness I don't speak with them but once every couple of weeks. Now it's at a point with my hubby that I just don't know what that man is thinking. He still expects the same ole Ev.
     Well, I better cut this or it could go on and on. Believe me when I say you're not alone. You can e-mail me anytime even if ya want just an ear. Take care and God bless, Evelyn. eveysue@hotmail.com


Oscar, March 10, 2004 - Hi, My grandfather is 94 years old with full mental functioning and a strong will to live. He has been diagnosed with aortic stenosis. The stenosis is approximately 80%. He is weak and wheelchair bound. How risky is an angiogram? Are there any options for someone this age? silvercache@yahoo.com


Andy P's March 10 reply to Deborah's March 1, 2004 - Hi Deb, I received a bounceback on your e-mail address. Here is the text of the message I sent you: I saw your posting on Jon's CHF site, and thought I'd say hi. I live in the Seattle area (Ballard) and was diagnosed on 12/31 with (so far) idiopathic dilated cardiomyopathy. I was curious where you went for your care. I'm using Virginia Mason, but have lately been less than impressed with the doctors I've seen. Maybe my expectations are too high, but it seems like at best slightly engaged interest is how I'd characterize my care. I'm 39 and like you, went to the doctor with what I thought was a lingering post-cold cough. The next day I'm sitting in a cardiologist's office being told I have a significantly enlarged heart and am in CHF. Kind of a shock, as you well know!
     My EF is 23% and I feel very nearly completely normal, expect for the games my mind plays on me. I still work full-time (telecommute full-time from home, which helps), work out at the gym regularly, and pretty much do everything I had been doing. With the exception of the handful of drugs I take every day, I still can't believe there is anything wrong with me.
     It sounds like, except for side effects from the meds, that you are doing well. I'm still trying to understand everything that is going on and any advice, especially on care or doctor recommendations you could give me would be greatly appreciated. Andy Pritchard. andy@mrdatacorp.com


Vicki J, March 10, 2004 - Hi, I just had my ICD put in on January 19. Now that they have my rhythm straightened out, my CHF doc increased my Coreg dose to 37.5mg twice a day. This is to try to slow down my heart rate. It usually runs 110+ all the time. I've had this problem for years and also high blood pressure. Of course, the higher Coreg dosage helps with the blood pressure but my heart rate is still up there. I'm also feeling nauseous most of the time.
     I love my Medtronic ICD and am glad to have that over with. My heart was stopping and I didn't know it so I've at least got a backup now. I developed diabetes about one year after my CHF started. My sugar ran from low to 400+. I walked 3 miles a day before I got CHF so I was at a normal weight. I really started to gain with all the meds and not exercising. Jon, are you still on the Atkins' diet? I lost 40 lbs on Weight Watchers and I was able to go from 8 insulin shots a day to 2 pills a day.
     When my Coreg was increased, my sugar went crazy again. I'm gaining some of the weight back even though I'm back on Weight Watchers again and am also back on insulin. I have to take one unit of Humalog for every carb I eat. I love fruit so this means taking lots of shots. What I wondered is, when I get adjusted to the 37.5mg of Coreg, do you think it will drop my insulin requirements like it did before?
     My CHF doc didn't recommend the Atkins' diet but I willing to try anything. I too have terrible leg pain down the backs of both legs and have trouble sleeping through the night. If anyone has any suggestions, please let me know. Thanks, Vicki. vj6464@aol.com


Jon's March 10 reply to Vicki J's March 10, 2004 - Hi Vicki, Yes, I am still on Atkins' and currently plan to be on it for life. I dropped from a high of 216 lbs to a low of 178 lbs. With daily resistance training for 1-1/2 years, I have gained back up to 189 lbs, but most of the gain has been muscle.
     The range of commercial low-carb products in the past year has exploded, but sodium content still makes it tough to follow. However, I find that on Atkins' I eat so much less portion-wise, that I can eat higher-sodium portions. That's because I eat less food overall each day - this keeps my daily sodium intake in line. It certainly isn't for everyone, but it works very well for me. It does require more effort to prepare meals and is more expensive (fewer cheap "fillers" like pasta and potatos are used) than a low-fat, low-calorie diet.
     Maybe some people with experience in diabetes and Coreg use, and with other weight-loss plans, can help with your questions too. People with real-life experience are better than theories I've read. <g> Jon.


Evelyn, March 10, 2004 - Hi, I received my MUGA test results from the nurse yesterday and my EF has improved to around 40%, up from 17%. I never thought it was possible for me to get that number up. Funny thing though, when I question her about the flexibility of this new number she made me feel like I wasn't happy with the news she gave me. Hmmm, go figure. My mind is still not at ease about the whole issue so I will wait and see how things go. Take care all. eveysue@hotmail.com


Kate, March 10, 2004 - Hi, I've lost close to 100 lbs and found a snack food that allowed me to crunch without the high fat, high sodium, high everything downside to things like chips. I buy frozen edamame (soy) beans. I prefer them in the shell, but they can be purchased shelled. You boil them for 3 minutes, drain and put in the frig until cold. They have that crunch we snackers crave. Soy is very helpful during the menopause years because it helps to reduce hot flashes.
     If you absolutely have to satisfy that sweet tooth, just 3 or 4 frozen grapes really take the edge off because the sugar concentrates when frozen. Am I good all the time? Of course not! But modern grocery stores allow for cheating in moderation. If I want cake on my birthday, I can buy a single slice and enjoy every morsel.
     I am so concerned about the state of obesity among young children. We adults just have to do a better job of setting a good example for our kids and grandkids. My weight gain came as an adult, post-chemo. I grew up when desserts were reserved for Sunday dinner, we split a quart of pop among 5 people on Saturday while eating popcorn, and no snacks other than fresh fruit existed during the week. The word "supersized" wasn't even in our vocabulary. Kate. tothymecottage@frontiernet.net


Sheryl C's March 10 reply to Vicki J's March 10, 2004 - Hi Vicki, I also am very insulin resistant and take a lot of insulin for very little carbs. Are you on a long-acting insulin like Lantus besides your Humalog? I usually eat my fruit with breakfast or lunch so I will use up the extra carbs. Those carbs are easier to work off than say a hunk of dense bread.
     I hope you are doing only fresh fruit and no juices. I love fruit in a green salad with grilled chicken. Okay, I really love them in pies, but,... When I have "bad days" my insulin is practically useless and I eat almost no carbs. That is probably because I do nothing but lay around on those days. Before each meal and at bedtime, I decide my insulin dosage by how many carbs I plan to eat and what activities I have planned.
     Evelyn, on the bra thing, I am so glad God didn't listen to my young prayers and give me the bosom I asked for. ;-) I can't stand to wear a bra most of the time. I have become the queen of overalls. They hide the fact that I don't wear a bra. Also consider vests. If you are well endowed, I guess you have a problem. Duct tape? Isn't it coming out in designer colors? <g> Sheryl C. cvprehab@hotmail.com


Tom Campbell, March 10, 2004 - Hi, I'm 55 and was diagnosed a year ago with DCM and CHF. The first indication was trouble breathing after I had minor surgery with a lot of intravenous fluid. In hospital, they got rid of the fluid, confirmed I don't have coronary artery disease and put in an ICD because of arrhythmia.
     After the hospital stay, I felt okay for several months until my Coreg dose got to around 18mg twice a day. By the time it got to 25mg, I was short of breath, weak and more fatigued all the time than I'd been since the Army. The nurse practitioner cut my Coreg back to 12.5mg in October but I still feel awful at best. I'm also clinically depressed. I was before diagnosis but I was getting better and now I'm much worse.
     Anyway, being so tired I must force myself to get anything done and it has taken all the pleasure out of life. The doctor cut my Coreg back to 6.25mg twice a day a couple of weeks ago, but no change yet. I keep hearing that people live for years this way but I can't imagine it. How does one get used to this? Should I hope for improvement? I can't get a definite answer from my doc. tomcam333@comcast.net


Susie O's March 10 reply to Evelyn's March 9, 2004 - Yes! I agree totally about the bra getting tighter. Mine is much more than just the straps. By mid-day there are times I feel like I need to loosen it up. Not every day, but like you said, you feel the abdomen swelling and it seems like it just continues to go up. I haven't been able to convince anyone of this before so thanks for making me think I'm sane for awhile. <g> texlady1@hotmail.com


Ruthie A's March 10 reply to Vicki J's March 10, 2004 - Hi Vicki, If your doc won't go for the Atkins' Diet or you think it's too severe for you, maybe the South Beach Diet might work. It's also a low-carb life style but does include some carbs in your Phase 2 meal plan. The creator is a cardiologist, so it's also supposed to be "heart healthy" meaning low sodium, low bad fats, etc. It's worth checking into at least. Ruthie A. rlaba51@yahoo.com


Ruthie A, March 10, 2004 - Hi y'all, I had an experience today that really reminded me of how vigilant we must be with our doctors and their instructions. I was interviewing a new PCP (I fired my old one for lying and refusing to communicate with me) and we were going over my med list and health issues. I see a CHF specialist and an endocrinologist for my diabetes. This PCP suggested I fire them both and let him take over total management of my care. I was so dumbfounded that I just changed the subject! I was not aware PCPs wanted it all anymore. I thought they welcomed specialists because then they don't have to handle tough or complicated cases. How wrong I was. Needless to say, I will not be seeing this doctor again. The $20 copay was worth finding this out now rather than later.
     For those of you new to this forum, may I remind you that no PCP is knowledgable enough or equipped enough to provide appropriate care for CHF? For that matter, neither are general cardiologists. If you don't have a CHF doc, get one! It may save your life, as it did mine a few years back. Ruthie A. rlaba51@yahoo.com


Jack D's March 10 reply to Vicki J's March 10, 2004 - Hello Vicki, I am overweight (but going down), on Coreg, a statin drug known to increase blood sugar, several other drugs, and I am diabetic. I take no meds for diabetes. I am on a strict but amazingly varied Atkins diet and my A1C tests for over a year have equaled those of a person without diabetes. However, if I eat something I shouldn't, my blood sugar gets wacko.
     In order to control your blood sugar naturally, you are going to have to completely ignore the stupid diet plan that is presented to you by the diabetes people. You are going to have to forget that fruit exists. Either you love yourself and try to stay alive or you throw common sense out the window and gobble fruit. You might as well just sit at the table eating sugar out of a spoon.
     Learn the Atkins diet and then learn the nutritional content of food. If its ready-to-eat, in a can, box, or bag, comes from the deli section, is low-fat, no-fat, then you can pretty much guarantee that it's not acceptable. After you have learned all this stuff, then start your Atkins "life style." It isn't a diet. It's a new way of life. If you aren't strong enough to manage a new way of life then you are going to be doomed to a life time of asking people for a magic bullet that requires no effort or discipline.
     I was supposed to be dead a long time ago and things just keep happening to push me along that road. But I'm not dead and discipline is a major reason that I'm still alive. Discipline and stubbornness bring results that keep amazing my doctors. maddjak@hotmail.com


Tony, March 10, 2004 - Hi, Eighteen days ago we got rid of our detergents and fabric softeners and re-washed all our clothes, towels, sheets, covers, socks, handkerchiefs, etc,..., in baking soda. We used distilled white vinegar instead of liquid fabric softener and dampened a face cloth with 3% hydrogen peroxide and threw it into the dryer, instead of using a fabric softener sheet. I also stopped using mouthwash to brush my teeth and am now using a mixture of hydrogen peroxide and baking soda to brush my teeth.
     The improvement in my energy, how well I feel, the way my heart beats and my blood pressure has been dramatic. During the 10th, 11th and 12th days, I experienced what I considered to be very unusual withdrawal symptoms, which I assume were from not being exposed anymore to the chemicals in fabric softeners and detergents. Has anyone else had a similar experience? t0nyt@yahoo.com


Tom S' March 11 reply to Tom Campbell's March 10, 2004 - Hi, I'm a 57 year old male who has been suffering with CHF, cardiomyopathy and arrhythmia, and of course the ubiquitous fatigue and have been doing so since 1996. Actually, it started in 1993 or 1994 but I was too stubborn and stupid to do anything until both legs had blown up like balloons and I couldn't sleep or even rest very well in any position.
     I knew exactly what the diagnosis was well before going to the hospital but treasured my high paying job more than my life, wife or 8 living children and at the time 3 grandchildren. Now that number has grown to 6 grandkids and I owe it all to learning how to cope with fatigue and realize it is a warning sign that I am pushing the limits and need to back off and relax.
     Find other things to do that don't involve much physical strain. I do a lot of work on my computer for my church and for my children's schools and organizations. Even that can be very fatiguing at times. Frankly I find going to the bathroom very tiring and I even keep a "peter pan" next to the bed at night so I don't have to get up in the middle of the night if I don't want to. Getting up wakes me up so badly that I can't go back to sleep and end up being really fatigued for most of the day.
     How do you cope with it, you ask? Simply put, you don't have any option - you have to learn to live and even enjoy a laid back life style. After all, it is very doubtful the old one is coming back any time soon. bigheart@muchomail.com


Mike, March 11, 2004 - Hi, I have been on the Atkins diet for almost 90 days. Although I have lost 21 pounds, they have had to adjust my Coumadin (warfarin) every 2 weeks. It seems my blood is getting thicker all the time. Prior to this I have been very steady with no adjustments for 3 years. Any thoughts or suggestions would be appreciated. I am not sure if I want to continue this. msisbell@earthlink.net


Giorg, March 11, 2004 - Hi, In IDCM patients, according to the article at www.americanheart.org/presenter.jhtml?identifier=3014150, statins seem to improve heart function in addition to the improvement observed with beta-blockers and ACE inhibitors. This sounds great! I know though, that statins are actually dangerous for us since they reduce in the blood the concentration of CoQ10, an important substance for the heart. So we must wait, as usual, for big trials we cannot risk for side effects. But there is hope. Bye, and thank you, Jon. giorgclunei@hotmail.com


Craig's March 11 reply to Kate's March 10, 2004 - Hey Kate, Sorry to put a downer on your great efforts but I got excited when I saw the beginning, "I have found an alternative to chips ..." I'm sorry Kate, but soy beans, frozen?! <g> Ya can't really compare 'em to chips! Anyway, congrats on the weight loss, and I hope you come up with a better solution for snacks other than frozen soy beans! ;-) bayce@optusnet.com.au


Joyce, March 11, 2004 - Hi, My husband has had CHF for 5 years and diabetes for 2 years. He now says he at time feels jittery and will shake all over like he is cold but is not cold. Has anyone else had this? jas48@webtv.net


Lydia Moore, March 11, 2004 - Hi everybody, I would like to address the women on this site. About a month ago, I went off hormone replacement therapy and I lost 15 lbs, lost a lot of water I was retaining from hormones. I feel a whole lot better. I also did myself a great favor since hormone replacement is not considered a good idea anymore. So if any women here are on hormones, please think about this. My doctors never said anything about it. I had to experience it for myself. I guess we always have to teach our doctors one thing or another. God bless all of you. Lydia. flanders2@verizon.net


Jack D's March 11 reply to Craig's March 11, 2004 - Well Craig, I've found the alternative to chips even though on Atkins I don't eat them anymore. The real alternative to chips is chips. Two different kinds: Potato and corn. For potato chips you get a precision slicer and bake your chips in the oven on top of one of those large wire mesh pizza baking things. You'll have to figure out how long on your own because I never ate potato chips.
     For corn chips you heat the oven to maximum temperature then turn it off and arrange one layer of corn tortillas on the center rack making sure the tortillas don't overlap, close the oven and forget it. When you remember the chips hours later you can open the oven and remove them. But don't put them in the oven when it is turned on! maddjak@hotmail.com


Kate's March 11 reply to Craig's March 11, 2004 - Hi, I bet you didn't bother to try 'em did you? Did you know that frozen veggies and fruit harbor more nutritional value than fresh? Picked, quick frozen, and packed while the fresh stuff is still winding its way to the grocer, the vitamins remain frozen in place while they diminish rapidly in the fresh. If you make it organic frozen, you can't top it unless you are growing it in your own yard.
     Right now you couldn't pay me to chew the salty, greasy things that come in bags. Yuck! I do, on some very cold winter days, make a batch of homemade potato chips but they are done in the oven without salt. They are deelish. Once you establish truly healthy eating habits, you can't imagine why you ate the other stuff in the first place. Kate. tothymecottage@frontiernet.net


Vicki J's March 11 reply to Sheryl C's March 10, 2004 - Hi Sheryl, Thanks for the quick response. I used to take 40 units of lantus in the morning and one unit of humalog for every carb I ate. I was on Coreg 25mg twice a day. Then I joined Weight Watchers and lost about 40 lbs. I started bottoming out on the insulin and was able to quit all shots and only take 2 Glipizides 2.5mg twice a day.
     My CHF doc raised my Coreg to 37.5mg twice a day to try to get my heart rate down. So far, only my glucose has gone crazy. I'm only on the humalog now but think I need the lantus again. After not many carbs last night, my sugar went up to 441. As I'm sure you know, it's a pain having to count everything you put in your mouth. Thanks for writing, Vicki J. vj6464@aol.com


Sandy, March 11, 2004 - Hi, I just got home from my 3-month check up with the doctor. He did a MUGA and an echo. My EF went from 20 to 45% and my mitral valve has stopped leaking, so I am going to have a TEE in 3 months and not see the doctor for 6 months. shallacy@mo-net.com


Vicki J, March 11, 2004 - Hi Ruthie and Jack, Thanks for the suggestions on the Atkins and South Beach Diet. I will certainly look into them. I just loved the Weight Watchers Diet because I was able to get completely off the insulin shots until the CHF doc raised my Coreg dosage from 25mg BID to 37.5mg BID. I've read that Coreg really messes with your sugar. I'm going to ask my doc to see if there is something else to lower heart rate that doesn't affect glucose. vj6464@aol.com


Craig B's March 12 reply to Kate's March 11, 2004 - Hi Kate, <g> I realise the great nutritional value of fruit and veggies, and the fact that once you start great eating habits,... The point I was trying to make is that you cannot compare nutritious veggies to a packet of crisps/chips. While I agree they are not a healthy food intake, 41 years of habits are very hard to change. You can't tell a smoker that's still smoking, "Oh, dude, just quit - start drinking apple juice instead." ;-)
     I agree, anyway, I love fruit. My favourite food in the whole world are oranges. I couldn't live without them or grapes or watermelon or plums or green apples or apricots or pears or bananas. Yummy. It's a pity John Candy didn't realise how bad chips are; they killed him in the end. He apparently overate way too much junk food, especially chips! bayce@optusnet.com.au


Beckie Hanks, March 12, 2004 - Hi, Does anyone know if the South Beach Diet is low sodium? I haven't been able to get it, but from Internet research, I find nothing that makes me think it is. It seems to be geared more toward CAD. I will order it today if so, because I seem to be doing okay on low sodium and now need to lose weight! Beckie. rebekah.hanks@bsd.k12.de.us
 
Jon's note: It is not low-sodium. Most low-carb diets can be done low sodium, it just takes more work getting it right.


Valerie R's March 12 reply to Jack D's March 11, 2004 - Hi, I like the no-salt potato chips they sell in our grocery store. According to the bag, they have no sodium and I like the potato flavor. I've run into 3 different brands, and one is better than the others but hard to get.
     Also, if you want something different, try peeling and slicing a sweet potato into fry lengths, dig in egg and cinnamon, place on a greased cookie sheet, and bake at 450° F for about 20 minutes until crispy outside and soft inside. vgrogers@aol.com


Janet, March 13, 2004 - Hi, I am a recovered peripartum cardiomyopathy patient. My EF went from 18 to 60% over 4 years and I feel 100% back. I've talked to my doctor about dropping my last 2 meds (Losartan and Coreg) and he is against the idea and wants to leave me on meds for precaution only. I'm in my 40s and don't want to spend the rest of my life on medications I may no longer need.
     Has anyone out there dropped their meds after recovery and done just fine? Is there compelling information out there to convince me not to do this? Thanks! janetca1@msn.com


Jon's March 13 reply to Janet's March 13, 2004 - Hi Janet and everyone, Please forgive any short replies or delayed posts - I am learning to use this new 88-key keyboard, on which many keys are in different locations than on the usual 104 key or whatever keyboard. Arrggghhhh!
     Janet, I intensely advise you to stay on an ACE inhibitor and beta-blocker. The official treatment guidelines say to stay on the ACE inhibitor and the following link points out the wisdom of staying on the beta-blocker. I have gone from an EF of 13% to roughly 60% and I am still on all my meds since I still have symptoms. My Vo2max still stinks despite daily exercise and activity.See www.chfpatients.com/archives/archives_search.htm#mortality_testing_and_numbers. There are also other pertinent posts from readers (like Dallas and Robin L) who have suffered after stopping meds if you search The Archives for them. Jon.


Susan's March 13 reply to Giorg's March 11, 2004 - Hi, What's this about statins? My PCP just advised me to get on Lipitor because of a jump in my cholesterol and LDL. I'm stalling and will check with my cardiologist regarding this beforehand.
     I'm thin and walk 1 to 3 miles daily and do a 6-kilometer hike most Saturdays. Figure that - bad genes, I guess. Susan. scamer39@rtcol.com


Lori K, March 13, 2004 - Hi, All these posts regarding diets made me think I was at the wrong web site. For those of us that eat healthy but want some low salt food updates, I found No Salt bread at Trader Joe's. Also, Boars Head Meats makes No Salt Added roast beef and low salt ham. They also have No Salt Added Swiss and low salt Muenster Cheese. Jay's potato chips come in a No Salt Added variety. Also, Trader Joe's has many lower salt frozen ehnic dishes such as Pad Thai and Curry Chicken Dinners all at about 105mg per bowl. They are very good tasting, too! I am in northern Illinois but Trader Joe's, I believe, is out of California. It is a specialty food chain. They have computer lists of all their low salt foods. Anyhow, I cannot comment on sugar levels, just sodium. Take care, everyone. Lori K. thegoof86d@aol.com
 
Jon's note: This, and other low sodium resources are linked at www.chfpatients.com/links.htm#sodium.


Sheryl C, March 13, 2004 - Hi, The whole food thing, ask each food item, "What's in it for me?" If the answer is nothing, don't eat it. Educate yourself on good nutrition. Eat what your body needs including grains and fruits. The key is in the portions. You don't need starchy carbs at each meal unless you are working the north 40 with a mule and a plow. Cake is for birthdays, a few bites, not a fourth of a cake. Pie? Thanksgiving, a small sliver. If you must, a pasta serving is a 1/4 cup, same with potatoes and rice. Beans or whole wheat bread is a better carb choice.
     Hungry at 10:00 AM? An apple. 4:00 PM? Veggies and low-fat dip that you make. When do you get to eat chips? Once a month and count out the chips to match the serving size on the package. Eliminate the same amount of carbs and salt from the rest of the day to allow that cheat. Nuts would be better. Anything you can buy with low fat, do so.
     You didn't gain that weight in a few months, so don't expect to lose it in a few. If you starve yourself, you are setting yourself up to fail. If you don't know anything about nutrition, find your local diabetes nutrition counselor and pay for a couple of hours of teaching. Local hospitals usually have support groups for heart and diabetes that have lectures on nutrition.
     Read labels! Like the Nike commercial says, "Just do it." I choose my food to help my body feel better. My heart needs all the help it can get. Sheryl C. cvprehab@hotmail.com


Jon, March 15, 2004 - Hi everyone, Posts will go through now. I boo-booed setting up some security features and didn't catch it till yesterday. Sorry. Jon.


Pat R's March 15 reply to Jon's March 13, 2004 - Hi, I was diagnosed with cardiomyopathy in 1996 at age 44 and my cardiologist was not optimistic about recovery. Yes, I did show signs of heart failure. I can tell you that today at age 52, my cardiomyopathy is gone. I have been off medication for cardiomyopathy for at least 5 years. However, because of high blood pressure I was recently placed, first on a water pill and when that alone did not help, Altace was added. I would not be on this medication if I would lose the weight I have put on recently. On a case by case basis some patients could go off medication, but need to be monitored closely. I still see my cardiologist yearly and have an echo done every other year. I am doing well. Pat R. rolexpat@hotmail.com


Jon's March 15 reply to Pat R's March 15, 2004 - Hi Janet, I sure am glad to hear how well you are doing! I agree that some patients can go off meds, but I would never recommend it. Why not? Because of those that try, some must go back on meds but they never regain the ground they lost while they were off meds. To me, it's too much to risk possibly returning to a reduced EF with symptoms just to avoid taking 3 pills a day. The official treatment guidelines agree - and for very good reasons. Jon.


Tom Campbell, March 15, 2004 - Hi, I have DCM with CHF and arrhythmia with an ICD. I am alone and have to do for myself. I have trouble knowing in advance how much I can do. Sometimes my every-other-day exercising knocks me out, sometimes not. Sometimes the housework I try to do on off days makes me too tired to exercise and makes going to work tough. How tired I feel before exercising seems to have nothing to do with it. I was diagnosed a year ago and am so far unable to deal with my illness very well. My most recent echocardiogram shows no improvement from an EF of 20%. tomcam333@comcast.net


Steve, March 15, 2004 - Well, today Social Security rejected my claim for SSD. With a recent echo EF measurement of 15 to 20% and not enough stamina to shop for groceries without fear of collapsing, I do believe the process is flawed. I have, of course, already hired an attorney that specializes in SSD cases and now the fight (and wait) begins. It is depressing to read that someone I don't know, who has never seen me, can claim I am fit for work. How can they tell me that when I can't do much of anything without my blood pressure bombing out and my legs getting weak? I am not even able to exercise as much as desired. Has anyone out there had a similar case and won in court? shpdwcopa@msn.com


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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