The paperwork never ends The Archives
November 16-31, 2002 Archive Index CHFpatients.com

Cat 11-16     e-mail about being in a study - anyone else?
 
Jon's 11-16 reply to Cat's 11-16     if anyone participates
 
Amelia's 11-16 reply to Jon's 11-14     sodium and sausage
 
Amelia 11-16     sodium tips and a web site resource
 
Michael S' 11-16 reply to Jody H's 11-13     flu shots and Guillian Barré
 
Michael S' 11-16 reply to Jon's 11-14     lower sodium sausage and bacon
 
Giorg 11-16     pacemaker/ICD questions
 
Jon's 11-16 reply to Giorg's 11-16     I hope someone else answers too
 
Jimmie 11-16     what does this mean about my heart?
 
Bob H 11-16     checking in
 
Cat 11-18     blood test question
 
Sheryl LaCoursiere 11-18     apology for using e-mail addresses & more
 
Barbara M 11-18     you can get better long after getting CHF
 
Gino's 11-18 reply to Giorg's 11-16     treatment ideas and suggestions
 
Gino's 11-18 reply to Bob H's 11-16     it's good to hear from you
 
Gino's 11-18 reply to Jimmy's 11-16     left ventricular dysfunction vs full-blown CHF
 
Joe S' 11-18 reply to Amelia's 11-16     sausage, MSG & more
 
Natalie K's 11-19 reply to Jon's 11-16     feedback
 
Jon's 11-18 reply to Natalie K's 11-18     feedback is critical
 
Fred D 11-18     racing pulse at rest - anyone else?
 
Michael S' 11-18 reply to Giorg's 11-16     I get similar sensations sometimes & more
 
Joe S 11-18     bad body aches - seek ideas
 
Betty S 11-18     seek ideas about my heart problems
 
Clara D 11-18     how do you nail down an arrhythmia?
 
Amelia's 11-19 reply to Joe S' 11-18     sausage, Atkins' diet
 
Scott Brown's 11-19 reply to Joe S' 11-18     diuretics, internal organs & more
 
Cindy 11-19     report terminology question
 
Jacky 11-19     is LBBB part of cardiomyopathy?
 
Jon's 11-19 reply to Jacky's 11-19     LBBB and cardiomyopathy
 
Jon 11-19     note on high-protein diets
 
Brian 11-19     seek advice on personal problem (by e-mail)
 
Sandy 11-19     too many doctors? & more
 
Jon's 11-19 reply to Sandy's 11-19     trust your instincts
 
David A's 11-19 reply to Amelia's 11-16     spam, sausage, sotalol questions
 
Chuck Hammerstein's 11-20 reply to Jon's 11-14     sausage, pain killers question
 
Jaci B 11-20     bad ICD experience, seek advice
 
Lew 11-20     can non-CHFers ever really understand? & more
 
Dee L 11-20     is this ridiculous?
 
Don's 11-20 reply to Lew's 11-20     that's exactly how I feel
 
Sheryl C's 11-20 reply to Amelia's 11-19     hanging in there
 
David Wilson 11-20     there is definitely hope
 
Barbara D's 11-20 reply to Jaci B's 11-20     ICD experiences and more
 
Amelia's 11-20 reply to Lew's 11-20     we all feel like that sometimes
 
Scott Brown's 11-21 reply to Chuck's 11-20     Tylenol
 
Scott Brown's 11-21 reply to Jaci B's 11-20     coping with your situation
 
Jon's 11-21 reply to Jaci B's 11-20     just my personal thoughts
 
Scott Brown's 11-21 reply to Lew's 11-20     we all feel that way! & more
 
Jack D's 11-21 reply to Jaci B's 11-20     lawsuits and moving on
 
Robert 11-21     your site is very informative
 
Tom S' 11-21 reply to Lew's 11-20     looking good, but not
 
Cindy 11-21     why wasn't I blood tested
 
Jon's 11-21 repy to Cindy's 11-21     blood testing
 
Joe S' 11-21 reply to Dee L's 11-20     doctors not calling back
 
Paul Massey 11-21     how will my wife do?
 
Dee L's 11-21 reply to Jaci B's 11-20     that was a nasty situation & more
 
Mike's 11-21 reply to Dee L's 11-20     doctors are people too!
 
Jon's 11-21 reply to Mike's 11-21     here's what I think happened
 
Norma's 11-21 reply to Lew's 11-20     looking good, but not
 
Jaci B 11-21     more info
 
Mel G's 11-21 reply to Paul Massey's 11-21     my heart failure experience
 
Joseph P's 11-21 reply to Jaci B's 11-20     my view
 
Sherrell G's 11-21 reply to Barb D's 11-20     drop me a line if you'd like
 
Jaci B's 11-21 reply to Scott B's 11-21     more info
 
Jon's 11-21 reply to Jaci B's 11-21     just curious
 
Jaci B's 11-22 reply to Jon's 11-21     more info
 
Jon's 11-22 reply to Jaci B's 11-22     it was bad but life goes on
 
Lorraine's 11-22 reply to Norma's 11-21     looking healthy, and losing weight
 
Dee L's 11-23 reply to Jon's 11-21     that is correct & more
 
Vicki 11-23     family genetics question
 
Jon's 11-23 reply to Vicki's 11-23     tricky family genetics
 
Scott Brown's 11-23 reply to Paul Massey's 11-21     prospects ahead, EF & more
 
Scott Brown's 11-23 reply to Dee L's 11-20     doctors on call
 
Scott Brown 11-23     are we doing even better than we think?
 
Jon's 11-23 reply to Scott Brown's 11-23     yes and no
 
Joseph P 11-23     got good help from Medtronic
 
Jon's 11-23 reply to Joseph P's 11-23     help from companies
 
Ahmed Hakky 11-23     seek PH treatment info
 
Ben B's 11-23 reply to Jon's 11-23     numbers
 
Jon's 11-23 reply to Ben B's 11-23     numbers
 
Gino 11-25     numbers
 
John S' 11-25 reply to Ben B's 11-23     numbers
 
Joe S' 11-25 reply to Scott B's 11-23     staying healthier
 
Bob N 11-25     another take on numbers
 
Wayne 11-25     So what do we know about CHF mortality?
 
Jon's 11-25 reply to Wayne's 11-25     not much, really
 
Jon 11-25     make a difference!
 
Carole K 11-25     mortality and numbers
 
Scott Brown's 11-25 reply to Wayne's 11-25     mortality and numbers
 
Scott Brown 11-25     hey Jon, what about heart transplant?
 
Jon's 11-25 reply to Scott Brown's 11-25     heart transplant
 
Emil 11-25     has anyone had a heart wrap like Acorn?
 
Lori K 11-25     does all this testing sound okay?
 
Jon's 11-25 reply to Lori K's 11-25     all this testing
 
Darlene T 11-25     seek quick responses from CHFers
 
Sue 11-26     seek info on muscle cell transplants
 
Jon's 11-26 reply to Sue's 11-26     for what it's worth
 
Dee L's 11-26 reply to Sue's 11-26     article on the procedure
 
Darlene T 11-26     thank you very much
 
Lori's 11-26 reply to Jon's 11-26     all these tests - seek opinions
 
Myrtle C 11-26     am tired of being tired
 
Clara D's 11-27 reply to Myrtle C's 11-26     fatigue, CoQ10 helped me a lot & more
 
Jaci B's 11-27 reply to Sue's 11-26     update us if you find more
 
Mary 11-27     cardiac PET scan experience
 
Sheryl C's 11-27 reply to Myrtle C's 11-26     life style changes, questions & more
 
Scott Brown's 11-27 reply to Jon's 11-26     heart transplant
 
Sue 11-27     intro, seek CHF doc in Kentucky
 
Joseph P 11-27     seek tikosyn experiences
 
Vicki S 11-27     seek CHF doc in Iowa
 
Jaci B 11-27     no reply from ICD people
 
Natalie K 11-27     cheesey information
 
Richard M's 11-27 reply to Sue's 11-26     adult stem cell trials
 
Amelia 11-27     update, being out of whack " more
 
Susie O 11-27     best wishes
 
Sandy 11-28     best wishes
 
Myrtle C's 11-28 reply to Amelia's 11-27     fatigue, doctors & more
 
Myrtle C 11-28     best wishes
 
Margaret D's 11-28 reply to Sheryl's 11-27     fatigue, doctors & more
 
Margaret D 11-28     seek amiodarone start-up experiences
 
Eve's 11-28 reply to Vicki S' 11-27     scleroderma resources, experience
 
Amelia's 11-29 reply to Myrtle C's 11-28     this helps, Thanksgiving & more
 
Sheryl 11-29     seek diabetic neuropathy, neurontin experiences
 
Jacky's 11-29 reply to Margaret D's 11-28     amiodarone start up experience
 
Rebecca C 11-29     intro, CHF changes & more
 
Doreen 11-30     seek others with family CM history
 
Natalie K 11-30     giving to charity question
 
Jon's 11-30 reply to Natalie K's 11-30     giving to charity experience
 
Jon 11-30     warning about replying to info requests
 
Sabrina 11-30     seek info
 
Margaret D 11-30     seek advice on sleep disturbances
 
Dorothy Powell 11-30     my CHF experience, listen to your body
 


Cat, November 16, 2002 - Hi, I just received an e-mail asking if I want to participate in a survey about heart-related support groups. Has anyone else received it, and if so, what are your thoughts about it? It is supposed to be from the University of Connecticut School Of Nursing. lafsalot2000@yahoo.com


Jon's November 16 reply to Cat's November 16, 2002 - Hi Cat, If anyone responds to this request to participate in a study, please let me know where they say they got your e-mail address. If they got it from my site, they violated our posted content use rules and I need to call them and have a word.
     I like presenting opportunities to readers but I don't want e-mail addresses harvested and used this way. They should ask me so I can set up a form for readers to sign up at instead of e-mailing you. That way, it's still an opportunity but it's totally voluntary.
     Speaking of forms, I could use a lot more input on this topic: (let it load!) www.chfpatients.com/archives/archive11-2002a.htm#Jon11-6b (also see: www.chfpatients.com/archives/archive11-2002a.htm#Jon11-6replyVee11-6 ). Jon.


Amelia's November 16 reply to Jon's November 14, 2002 - Hi Jon, I like Jimmy Dean's sausage. Incidentally, Jimmy is from my old neighborhood in Maryland, where he started playing his guitar and pal'd around with my brother. His sausage has 550mg per lb, so I limit the amount per meal and cut down on sodium from other foods. I haven't really looked for any with lower sodium, since I prefer Dean's, but I will search next shopping day. Best to all, Amelia. amelias@erols.com
 
Jon's note: Thanks!


Amelia, November 16, 2002 - Hi, You probably know this but I found some hints on cutting down sodium in holiday cooking. For cookies, omit the salt and use unsalted butter. For Kosher meats, reduce sodium by soaking in cold water up to 2 hours, changing the water every 30 minutes or place meat in a pot with cold water then bring to boil, drain, and cook to your recipe. Use fresh or frozen veggies, or No salt Added canned vegetables. Do not use seasoning salt such as garlic salt - use garlic powder and onion powder instead.
     Also, I found an interesting web site. I have not searched it all but thought you might be interested in the heart failure info there. See www.guidant.com. amelias@erols.com


Michael S' November 16 reply to Jody H's November 13, 2002 - Hi Jody and anyone else also, I had Guillian Barré in 1951. It's like polio, the only differences are we walked out and polio people didn't. So anyway, several sources such as doctors and pharmacists have told me that I would stand a chance of becoming re-paralyzed if I have a flu shot, so the answer for me is I don't get them. There was also another reason that some people should not have them other than an allergy to eggs, but I do not recall that. My memory went south after onset of CHF. kamikaze99@charter.net


Michael S' November 16 reply to Jon's November 14, 2002 - Hi Jon, Costco has low-sodium bacon also, although since bacon was one of my favorite foods I don't use it as I will probably like it too much. There is a veggie burger type of sausage in the frozen food sections at some of the stores here that I use every once in awhile, but I can't remember the sodium content and I am out right now, but it will fit within a 2000 mg sodium a day diet. I hope everyone is doing okay. Michael. kamikaze99@charter.net
 
Jon's note: Hmmm, pseudo-sausage. Wild and wacky. <g>


Giorg, November 16, 2002 - Hi, I have DCM and lately I am having a lot of PVCs, expecially at nights, maybe because I am a little bit more stressed than usual.
     I got an ICD/pacemaker implanted 8 months ago. When I have more than a couple of PVCs, it is like my pacemaker feels that my hear rate is very low and so it begins to work pacing my heart. I feel my pacemaker working as if it was a palpitation, and this is annoying. Moreover, a few seconds later it stops working because my heart rate without PVCs does not appear to be under the low limit of my pacemaker.
     In a few words: I experience brief times when my heart is going very slowly driven by the pacemaker, alternated to brief times when my heart is going faster with PVCs and this bugs me! Does anyone else experience this too? Do I need a new software or new parameters for my pacemaker. Thanks to all. giorgclunei@hotmail.com


Jon's November 16 reply to Giorg's November 16, 2002 - Hi Giorg, I hope someone with a pacer answers your first question. About the other question, I'd say you definitely need to have your pacer software set with some new parameters. This could drive you nuts. Jon.


Jimmie, November 16, 2002 - Hi, I just had 2 stents put in and while I was on the table, the doctor said my heart was slightly enlarged with a decreased output. They said my output was between 35 and 45, and should be between 45 and 55. They put me on the drug Coreg but no ACE inhibitor. Someone please tell me in plain English what all this means. Thanks, Jimmie. bolin@rhtc.net


Bob H, November 16, 2002 - Hi Jon and all you CHFers, I used to post here quite a bit and used to be at the chat all the time but I haven't posted for quite awhile. I am still hanging on, as usual not seeming to get any worse at least heart-wise, but I am still in severe pain from severe arthritis in my back and neck. I take MS-Contin for the pain so it pretty much hides the angina pain so the doc put me back on Isordil for that because before the MS-Contin I was having chronic angina.
     I recently had another angioplasty during which they placed another stent in my circumflex artery so I am good to go for a couple more miles, I guess. I am still unable to walk more than 15 to 20 feet so they now have me in a motorized wheelchair to get around.
     The main thing I wanted to say was that Jon, you sure are keeping this site up to date and it looks like it gets bigger and better every day. It is the best site on the Internet for information about the heart and not just about CHF either! I have recommended it to many people and they have all said the same thing. It is fantastic. Jon, keep up the good work. Also, keep your health as good as you can! Love all of you people, Bob H (oldgoat). oldgoat378@knology.net
 
Jon's note: Thanks!


Jon, November 16, 2002 - Hi everyone, Thanks to all of you for such quick and helpful responses about this "study" that e-mails are being sent about. There were too many for me to reply to them all. You guys are simply the best! Lots of people here got this e-mail.
     My content use policy prohibits harvesting of e-mail addresses and that is what has happened here. I have sent them an e-mail stating our position and requesting immediate action to stop this sort of thing.
     I'd be happy to work with any legitimate study group to offer participation to everyone here but this is the wrong way for anyone to go about it. If I get no reply to my e-mail I will contact them by phone. Thanks again for being so helpful. It always amazes me how much support I get from you! Jon.


Cat, November 18, 2002 - Hi, I've been running low grade temps since August and am having a number of tests to rule out the possibility that I may have endocarditis. The doctor ordered 2 sets of blood cultures and told me that I was to "have them several hours apart since bacteria can intermittently be released in the bloodstream." The lab technician said it wasn't necessary, that she would just take them from 2 different sites. What is the correct procedure? lafsalot2000@yahoo.com


Sheryl LaCoursiere, November 18, 2002 - Dear Readers, Jon has asked me to respond to you via this forum. Some of you may have received an email from me informing you of a study, which may provide online nurse support for cardiac patients. My intent was to personalize the invitation, but erroneously I did not read the site policy. Any reader who wishes to have their e-mail address permanently deleted from my records may contact me at sheryl@telecares.com and it will be done immediately. Please be assured that I had no malicious intent. I have heart disease in my family, and know the trials and tribulations from a personal as well as professional side. Sincerely, Sheryl LaCoursiere. sheryl@telecares.com
 
Jon's note: I told Sheryl that I might be willing to work with her in bringing opportunities to everyone here, but I don't want e-mail addresses used lightly round here. Why bug people by e-mail when a post here can guide you to a form that lets you sign up if you want to sign up? ;-)


Barbara M, November 18, 2002 - Hi everyone, I was diagnosed with IDCM and LBBB in January of 2001 with an EF of 10 to 15%. My meds were metropolol 50 mg twice daily, Atacand, digoxin, Lasix 80 mg daily, and Aldactone (spironolactone). After one year of treatment, my echo showed little improvement with an EF of 20%. My cardiologist then switched the metropolol to Coreg 12.5 mg twice daily and one year later, my EF is 45%.
     I have now been taken off all meds except Coreg and Atacand and am feeling well. For all of you who have read that if a person was going to get better, it would be in the first year, I am proof this is not necessarily so. I hope this will provide encouragement to all those suffering from this disease. Thank you Jon, for this excellent site, Barbara M. blmathers@shaw.ca
 
Jon's note: As you all know, I am not a humble person <g> but it really is the readers and posters here who make the site click


Gino's November 18 reply to Giorg's November 16, 2002 - Ciao, If I remember right, you are Italian too. The symptoms you refer to suggest a "pacemaker syndrome" usually a troublesome but not harmful situation. I recommend that you to speak about it with the cardiologists who implanted the device in order to define better the diagnosis (EKG holter monitoring) and establish the proper therapy. Taking into consideration your stress level, a good idea would be to verify the therapy for possible coexistence of anxiety and/or depression before changing the parameters that set the ICD. Very often these sort of symptoms indicate a "misacceptance" of the machine. gitarant@yahoo.com


Gino's November 18 reply to Bob H's November 16, 2002 - Ciao Bob, I'm very happy to hear news from you. I miss our chat but as I may constate, the "old lion" keep on roaring. Take care, dear friend. :-) gitarant@yahoo.com


Gino's November 18 reply to Jimmy's November 16, 2002 - Ciao, It could mean that your heart has some impairment due to myocardial ischemia (lack of complete blood flow to the heart muscle). If you have no symptoms like SOB, tiredness, edema, the proper definition of your situation is "left ventricular dysfunction" (Stage B of the AHA/ACC guidelines on CHF management), a harmful condition that may progress to CHFor cause sudden death.
     A recent trial (CARMEN) presented last August at the annual meeting of the European Society of Cardiology, showed that in left systolic ventricular dysfunction, Coreg is better than an ACE inhibitor alone to avoid worsening of left ventricle enlargement. In real-life treatment of coronary artery disease, the best choice is to use a beta-blocker first instead of an ACE inhibitor if ischemia persists. An ACE inhibitor may be added in the follow-up. Ciao. gitarant@yahoo.com


Joe S' November 18 reply to Amelia's November 16, 2002 - Hi Amelia, I hate being paranoid, but Jimmy Dean's sausage has MSG, which in my opinin is worse than sodium for many people. Regarding sausage, when I was first diagnosed with CHF, I went to the butcher at my store and he took me to the spice aisle and gave me over ten spices I could use to make ground pork taste like Jimmy Dean sausage. I am fortunate that my local supermarket (40 miles away) has a health food aisle that helps a lot. Joe S. jes@gbis.com


Natalie K's November 18 reply to Jon's November 16, 2002 - Well, my goodness, Jon, that's about the very least we can do for you. mcnat@yahoo.com


Jon's November 18 reply to Natalie K's November 16, 2002 - Hi, It is unusual, though. I was talking with the web master of a large doctor's practice and he was disgusted to hear that I get dozens of responses to my requests for input on things in general. He says he is lucky to get 2 or 3 from his readers. <g>
     It's very easy to think that others will respond so why should I? Or that it doesn't concern me directly so what do I care? Or that no one really listens to me so why bother? However, it is all the input from readers here that guides me. I was amazed at the direction topics suggestions took just a week ago. It has changed an ongoing project for me and for others who are working with me. We can't give people what they want if we don't know what they really want and we don't know if they don't tell us.
     I am fortunate (in a twisted sort of way <g>) because I have my own experiences as a CHF patient to draw on but I still very much need a wider range of input to get a feel for the general needs of people everywhere coping with CHF. So let me know what you want to know about, and what you think about information round here in general! I may not be able to do it, but I guarantee I will take you seriously. Jon.


Fred D, November 18, 2002 - Hi, Speaking of PVCs, early yesterday morning I was awakened by a pulsating sensation in my neck. I often feel my pulse in my neck, but this time it was really going. I awakened my wife and she checked it at 130. I also had a couple of PVCs and we decided to go to the emergency room.
     They did the usual tests: EKG and blood work, and all the time the rate was slowing. The emergency doc asked about my caffeine intake, which is high, and said that with the condition of my heart (damage from 2 heart attacks), the caffeine might be the culprit. He also mentioned antihistamines as a cause.
     I need to add that I experienced no real pain as a result of my elevated pulse, just a healthy dose of anxiety. Has anyone else experienced a racing pulse while at rest? My doc has told me not to worry about the PVCs unless they happen on a frequent basis. jdeal3@cox.net


Michael S' November 18 reply to Giorg's November 16, 2002 - Hi, This is what I went to Club Med for earlier this month, or late last month - the pacing. The doctor said to me that a small amount of people with ICDs feel the pacing as a palpitation. I mostly feel it lying on my back and left side, which is when pressure is on my heart. I have not felt it lying on my right side or when active. I hope this helps, Michael. kamikaze99@charter.nets


Joe S, November 18, 2002 - Hi, I've been getting bad body aches all over: feet, back, arms, etc. Could this be low potassium or something? Joe S. jes@gbis.com


Betty S, November 18, 2002 - Hi, It has been over 2 years since I posted anything here. I have been getting more and more frustrated with my care, or lack thereof. I had a mini-stroke in February of 1998. At that same time, they diagnosed me with CAD and early CHF.
     I have been diabetic for almost 8 years now. My blood sugar is not under control at all. It averages close to 400 with 2 Glucophage pills in the morning and 2 in the evening, plus 35 Units of insulin twice a day. I have frequent angina attacks and shortness of breath problems. Most days my feet look like elephants at the end of the day.
     I had a major stroke in August of 2000 and was paralyzed on my left side for nearly 6 months. I have TIAs if I am tired or under pressure (stress). I am on high doses of depakote for that. I also take atenolol, valsartan, Zocor, Glucophage, 70/30 insulin, aciphex, and aspirin. I always feel like my chest is exploding.
     The doctor just shrugs and says my EKG is fine. HHowever, there is a problem with my EKG: the timing is off on the ST wave. My heart stops if my pulse gets below 60. I am very frustrated and wondered if any of you have the same frustration, and might have any ideas for me. I would appreciate it. BetStipes@aol.com


Clara D, November 18, 2002 - Hi, I'm 69 and have IDCM and CHF. My ejection fraction is less than 15%. I have no symptoms except for minor fatigue. I exercise on a treadmill and EFT equipment at a medically supervised fittness center 3 days each week. I wear a heart monitor transistor and the equipment shows my heart rate. I usually have a hard time getting my heart rate above 110, but last Wednesday, about 30 minutes into my exercise, my heart rate started jumping around, up to 170 and down into the 90s and everywhere in between.
     After watching this for a few minutes while easing up on the intensity of the exercise, I decided I had better stop and get some advice. After taking my pulse (which had slowed a bit and was regular) and blood pressure, which was only slightly elevated, they did a rhythm strip which showed my LBBB but was otherwise normal for someone coming off exercise. I was told to call my doctor and let him know what happened, which I did. He said to call his office and make arrangements to come in if I felt in any way unwell.
     Friday I exercised for 45 minutes with no unusual pulse activity. This morning, as soon as I got on the treadmill my pulse immediately became irregular, going up to 160 beats per minute. I decided to keep walking since I was going so slowly (2.5 mph) and see if it would settle down, which it finally did after about 20 minutes. I then adjusted the speed to 3 mph, slower than I usually exercise, did another 10 minutes on the treadmill and then 20 minutes on the EFX with a steady, but slightly higher heart rate than I usually experience.
     I talked to the staff before I left and they said I should immediately stop exercising next time my heart rate becomes irregular and go directly to the cardiac unit and have a rhythm strip done. Of course, walking across the room often "cures" the condition the same way wearing a 24 hour holter monitor does, so how does one ever find out what's going on? I wouldn't have known my pulse was irregular if I hadn't been watching the display. I felt no discomfort. Has anyone else had this experience and what did you do to find the cause? ncdossetts@aol.com


Amelia's November 19 reply to Joe S' November 18, 2002 - Hi Joe, Thanks. I know that sausage is really high in many things we shouldn't have, but I guess I block it from my mind and tell myself, "Hey, it's alright once in a while." I have lost weight with this high-fat program. By the way, I guess you heard the news about the Atkins' diet. A study is showing that it is good for the heart although the heart association says they need more studies to agree completely. Best to all, Amelia. amelias@erols.com


Scott Brown's November 19 reply to Joe S' November 18, 2002 - Hi Joe, I have heard that once your organs become "salt avid" it will take a long time for the organs to go back to normal, I think several years. It all depends on the amount of damage done to the organs due to prolonged low blood supply. I am assuming your lung tissues are taking on fluids. My breathing is the most noticable trait when I am taking on fluid. A little diuretic likely isn't a big deal for "professional" CHFers like us. I just wish the gig paid! I hope you can get off those nasty diuretics soon. Take care, Scott Brown. kitchenerguy@hotmail.com


Amelia, November 19, 2002 - Hi Jon, I have been having a hard time coping somewhat with my heart failure. I am grateful that I am doing well except for the normal SOB and fatigue and sometimes 2 and 3 doctor's appointments a week. Dealing with this, pain, Coumadin checks, and now they have found that I have spinal cord compression and I will be seeing a neurologist on Thursday with the possibility of surgery.
     I am my 90 year old mother's caregiver even though she has a nurse aid 24 hours a day. I am getting stressed out, so I am now seeking counseling but you know what? I get more counseling with this site and each time I read the posts my heart goes out to each one and I really put my problems on the shelf for awhile. You are without a doubt drawing us to you because of your sincerity, knowlege, caring and advice, and your dealing with your own CHF. Credit also goes out to all on this site for their caring, sharing and sincerity, a good clean, helpful site Jon, that you have brought to us. Again, many thanks, Amelia. amelias@erols.com


Cindy, November 19, 2002 - Hi, I have a test report that uses the following terminology:"Myocardial Perfusion Impression: Artifact. No reversible myocrdial ischemia seen." I am reading this to mean that there is artifact but it is irreversible ischemia (in other words, my heart attack). Am I correct in reading this? cindy19335@yahoo.com


Jacky, November 19, 2002 - Hi, Can you tell me whether LBBB is part of cardiomyopathy or something separate? Thanks. Jackymwb@aol.com


Jon's November 19 reply to Jacky's November 19, 2002 - Hi Jacky, It is something separate, sort of, although LBBB is common in cardiomyopathy patients, while RBBB is not. LBBB is when your heart's electrical signals that tell your left pumping chamber to contract have to take the long way around to get to their destination. Unless it slows your heart rate way down or causes total heart block, it's usually without symptoms. Jon.


Jon, November 19, 2002 - Hi everyone, I would like to address a misconception that I find popping up all over the web and even in face-to-face conversations lately. The Atkins' Diet is not a "high-protein" diet. You will probably eat more protein than you did before but many people will also eat more vegetables then they ate before and you don't hear about that very often. <g>
     In his latest version of the "Atkins Nutritional System" he even warns that if you are not losing weight or going into ketosis (per test strips), you may be eating too much protein and to cut back on it because "protein in excess can convert into glucose." Here's another quote, this one straight from the official Atkins web site: "It is important to understand that Atkins is not an excessively high protein regimen. The macro-nutrient breakout in the Induction phase is 60% fat, 30% protein and 10% carbohydrate. It should be more appropriately be called a high fat regimen." The "induction phase" lasts only 2 weeks, then carb intake goes up.
     The rationale behind Atkins' for losing weight is to eat a very high fat-to-carbohydrate ratio, which as you see, does not mention protein. <g> The aim of the diet is to burn body fat steadily, stabilizing your blood sugar and easing the workload of insulin in your body.
     When someone refers to the Atkins' Diet as "high-protein" you may be dealing with someone who does not understand the Atkins' Diet as Dr. Atkins wrote it in his latest book. That goes for organizations as prestigious as the American Heart Association too, which calls the Atkins' diet a high-protein diet - incorrectly.
     I just wanted to clarify because there are a lot of high-protein diets and a lot of low-carb diets floating around and none of them are the same as the Atkin's Diet. Some may be better for you and some may be worse. It really depends on what you want and how your own individual body best operates. Jon.


Brian, November 19, 2002 - Help anybody, please. I have been here before, have had CHF since 1998 and am 43 years old. I am married to a woman that is bipolar (manic depressive) who has been in a rage for the past 7 days now. I have had the police at my home 4 times already. I had to spend yesterday in court preventing her from getting an order of protection on me. She would not let my daughter celebrate her 15th birthday last Saturday. She will not admit to her problem and runs around to all the different agencies in the area pretending to be an abused spouse. Every problem in her life is because of someone else.
     I know I put myself in this position by marrying her. I do love this woman when she is not in this state of mind but I just don't think my heart can take much more of this. Am I being a heel by getting a divorce from this woman because her illness is making me worse? Am I being selfish? Someone please advise me. (by e-mail - not post, please) b.morency@attbi.com


Sandy, November 19, 2002 - Hi Jon, David survived another CHF episode, class 3 this time plus a Coumadin level of 12.8. My basic questions: Drug combinations of Accupril, K-Dur, Coumadin, K-lite, Lasix, Lanoxin, and Prozac rather than Zoloft; for sleeping the cardiologist put him on Ativan but he hallucinated with it so the PCP switched him to Tranzene at 3.5mg, but that only lasted 3 hours.
     We feel we are doctoring with too many doctors, a cardiologist, a CHF specialist, and a great PCP. They don't want to step on each other's toes, yet I have to live with effects on David. Oh, he's also on J peg feed tube temporarily due to his weakened condition before a hospital stay of one week.
     By the way, he did receive the Insynch device in August. I am friendly with Guidant and Medtronic reps and they both were saying your site is one of the best and that they had recently attended a convention where it was mentioned. I am glad you are there. Our best and God bless. I hope to hear from you, Sandy. ofatts@aol.com


Jon's November 19 reply to Sandy's November 19, 2002 - Hi Sandy, If you think there are too many doctors for effective care, there probably are. Trust your feelings on that. Keep in mind that a CHF specialist is a cardiologist and should be able to provide or refer for all David's cardiac care. Thanks for the kind words. :-) Jon.


David A's November 19 reply to Amelia's November 16, 2002 - Hi Amelia, I thought the Jimmy Dean sausage sodium was too good to be true. I love that sausage. When I go to the grocery I debate purchasing it every time it goes on special. However, I look at the sodium content label and put it back. The way I read it, the sodium is 550mg per 2 ounce serving and not per pound. If it were per pound, I'd scoop all the packages off the shelf and put them into my basket; But you're right Amelia. When enjoying this nice, aromatic, tasty, delicious, mouthwatering, bodacious sausage, cut all the other sodium in the meal to a minimum.
     On another topic, I too received an unsolicited e-mail from Telecare. I e-mailed Sheryl yesterday and had my e-mail address removed from her list. I thought it strange that this appeared in my inbox the other day. I mean, I do get loads of spam, but nothing like this. The first thing I thought of is that they must have found Jon's Place and all the participant e-mail addresses.
     My Coreg has been adjusted down to 12.5mg BID from 31.25 BID because my doctors have added sotalol to my drug list to help prevent VT. I had a 22 second episode a week ago, but my ICD didn't fire because of my heart rate being below threshold and amount of time that had passed. I'm now looking for signs of becoming decompensated because of this change. Today I felt short of breath after mild exertion.
     Is anyone else taking this drug mix and if so, what were your experiences while starting the drug combination? Thanks to all. Dezen@worldnet.att.net


Chuck Hammerstein's November 20 reply to Jon's November 14, 2002 - Hi, Butterball brand has turkey sausage (tastes like pork), which as I recall is around 100 mg of sodium per (small) link. It is labled as "reduced sodium," still certainly not low. I treat myself with one link a few times a week. Other sausages with minimal sodium include venison and other odd ones that turn up in the high-end freezer section, big giant links of venison have only a few hundred mg of sodium per link.
     On another subject: pain killers. Having had a bout of joint pain, I read that aspirin products (in high doses) are bad for CHF and that Tylenol is bad for the liver. What's left? dominico493@cs.com


Jaci B, November 20, 2002 - Hi, This is my first post here. My hubby Scott and I live in TriCities, Washington. He is 40 and just got a Guidant ICD on May 1st at Sacred Heart in Spokane, Washington. On May 15 his local doc here accidentally brought the defib down to 125 from 185, and his defib went off on May 18 seven times. We got ambulanced to Walla Walla Hospital but they could do nothing for him there since they had no idea in the ER what to do with a Guidant Pacer/ICD unit.
     Apparently, there is a Guidant computer with the necessary software in an office right there at the hospital in Walla Walla and they could have helped him but the ER staff did not know it was there. When they called the toll-free Guidant phone number, Guidant should have told them one of the necessary units is right there; Guidant has reps in the area so they could have sent a rep to interrogate it.
     After a few days, I e-mailed Guidant asking them where all the computers were located near us. They had no idea that there was one in that hospital nor did the person who answered my e-mail acknowledge that we had one here in our doctor's office. When I asked where the closest ones are, she said Spokane. That is not true and that is quite a distance.
     We thought my husband was dying. They never told us it can go off repeatedly. We did not even know at that time why it was firing non-stop. They airlifted him to Spokane to Sacred Heart. I could not go along. I had to drive 4 hours by myself up the back country roads, lost out in the middle of nowhere. I was afraid when I got to Spokane that I would find him dead, so convinced was he of that. His mom flew in from Seattle. I called her and she said, "Should I come?" I said yes, thinking it might be the last time she gets to see her son. I called his dad, who immediately left home in TriCities and drove up.
     There was still no answer that night as to why this was happening. It went off 4 times the next morning, then finally a few hours later doctors interrogated it and learned that it was set wrong. They said they were sorry, reset it, and sent us home. We both have gone through so much trauma since then. He has not been the same. He has high anxiety and is scared to death every time he feels any emotion, good or bad. I am 41 years old, healthy up until then, and I went through so much trauma just watching him. I was so scared. They never told us it can go off more than once. I came down with fibromyalgia and since then I have chronic pain. I went to doctor after doctor, and they all said fibromyalgia.
     I had to quit my job or be fired, and I had a career I have been in for many years and loved it. I have never recovered and emotionally we are both a mess. I am basically disabled now and I have not worked since June 1. We just want our life back. Is what we have gone through normal? How do others deal with this?
     As a result now of my stupid fibromyalgia I have hypothyroid, Irritable Bowel Syndrome, insomnia, migraines, anxiety attacks, high cholesterol, and cracked teeth. None of these conditions were present before. Our insurance would not cover psychiatric help for dealing with this horrible event, and our new sudden financial situation due to me being housebound ever since then.
     Here is the whopper. We just learned that the reason it all happened was a software glitch, that even the legal department at Guidant was in on this catastrophe and a lot of software engineers got hung out to dry as a result of the software having this strange problem. It reset the defib rate with no one knowing it could, not even the doctor doing the interrogation.
     My husband is now on Zoloft and Xanax, and we cannot even begin to put our life back together. My hubby has had to leave our son's (actually he is my 8 year old nephew that we are raising for the past 4 years) sporting events and throws up due to anxiety. We cannot any longer attend social functions because of paralyzing fear, fear on his and my part, of him going through that again and dying. He does not even make enough to support us and our nephew, we needed my income. What would you do if you were me? That it was their software glitch just makes me furious. We have lost so much and our lives will never be like they were. Please advise, Jaci. onthegreen@owt.com


Lew, November 20, 2002 - Hi all, I'm just kind of jumping into the fray. I guess I just got tired of internalizing all my feelings. My biggest problem and this seems bizarre to say, is that my body has compensated very well for my condition. I have an EF of 15% and my last Vo2max result was around 16, but I am still commuting every day from New Jersey to New York City where I am working a 35 to 40 hour week without too much difficulty, at least until recently.
     Why do I say this is a problem? Well, despite appearing quite healthy and being able to still do a lot, it leads the people around me, including my wife, to think that my situation is really much better than it is. When you still look well, people don't realize what a daily effort it really is to do some of the simplest things. Sure I'm compensated, but how do you really get someone to understand that you are always tired? I just don't look exhausted - I feel it though. How do you really get someone to understand that sometimes you feel totally out of touch with whatever is going on around you, confusion sets in frequently, and that you look great when you are doing little, but that falls apart very quickly with any minor exertion.
     I guess I'm just rambling, but I needed to vent. I'm currently 52 years old, had my first heart attack at 38, the second a year later, and 4 years ago I had a quad bypass mostly due to diabetes speeding up my coronary artery disease. I am being treated at the New York Presbyterian (Columbia) CHF clinic. My regimen includes 2 diuretics, Coreg, Mavik, lipitor, Coumadim (I've already had one bout with gangrene in my toes due to clots - luckily I acted fast and all my toes are still there), and my insulin and an aspirin. rktlewg@aol.com


Dee L, November 20, 2002 - Hi everyone, I'm so frosted! :-( I called my doctor's office Sunday morning because I was feeling so terrible. His associate's nurse called back and told me to go to the ER so I did. We (family, the ER doctor, and I) waited for a call back from the associate, and finally the ER doctor ordered blood work and a chest x-ray. We waited some more - no call back - so the ER doctor ordered IV Lasix and oral potassium. In a while, he came back and told me that he was still trying to get in touch with either my cardiologist or the associate.
     Three hours later, I was discharged with still no call back. Could this be because I will be going on Medicare in a few months? I've heard of doctors more or less forcing patients to go elsewhere because they didn't want to take a Medicare patient. Whether this is true ir not, I'm changing doctors. Dee L. gardengirl33@juno.com


Don's November 20 reply to Lew's November 20, 2002 - Hi, Thanks for saying exactly how I feel. I was working full-time until recently. I feel like I can do anything, but when I try, I remember why I'm not working right now because I feel exactly what you described. I have mostly gotten past people thinking I'm faking it but it is still a little depressing when everybody I meet tells me how great I look. I guess I don't want to look sick, but walking around looking like there is nothing wrong with you is tough, too. I tell my wife I feel like I am in limbo, too well to be sick and too sick to be well. Pine32@pacbell.net


Sheryl C's November 20 reply to Amelia's November 19, 2002 - Hi Amelia, I also have my mom living with me. Sometimes it doesn't seem fair, huh? They never promised a rose garden, but how about a daisy now and then? ;-) Sending you a virtual daisy and a hug, Sheryl. cvprehab@hotmail.com


David Wilson, November 20, 2002 - Hi, Just a short comment: I changed docs to a heart failure specialist at Barnes Jewish in St. Louis. I am very glad I did. My EF is now 40% and my heart has shrunk. I now know I must watch my potassium closely, too high or too low both can knock you for a loop. I can now walk a mile a day and feel much better.
     For newcomers who feel awful, you can get better in time taking the standard meds, especially Coreg. There is light at the end of the tunnel. I now feel hopeful and that I may have many years ahead of me. Not long ago, I didn't think I would live another year or two. God bless everyone. davybwilson@webtv.net


Barbara D's November 20 reply to Jaci B's November 20, 2002 - Hi, I'm just a little confused about the glitch in the software on the Guidant device. If the local doctor accidently lowered it to deliver therapy at 125 instead of 185, how can it be a glitch? I would be looking at the local doc for answers.
     My husband has a Medtronic and I can certainly relate to the fears you and your husband are having. My husband had his ICD implanted in March of 2001 and he has had 80 shocks. One of the safety features on the Medtronic is it will only deliver 6 back-to-back shocks and then it has to be reset. This happened to him last December and he had to be shocked manually.
     His parameters are set extremely low, but it has to be that way. His unit has saved his life many times. He also takes Xanax. Like you, there were times I did not know if he would make it or not. The nurses at the local hospital did not have a clue about the ICD. I knew more then they did. The first thing is to find out all you can about your husband's ICD. Have his EP doc explain anything you're not sure of.
     The most important thing is to know that if a therapy is needed to save your husband's life, his ICD will do it. No one who has an ICD likes the shocks, but the majority are happy to be living. My husband is currently posted for heart transplant, so we live one day at a time and take nothing for granted. Things will get better and there are plenty of forums where you can go for support or just to vent.
     I read this forum every night and have posted a couple of times myself, but I have also gained a lot of knowledge from all the valuable information on this site. barbdavis@msn.com


Amelia's November 20 reply to Lew's November 20, 2002 - Hi Lew, I think most of us feel the same way about having to explain our health complaints despite the fact that others say we look great. It's the old saying out of sight, out of mind. There is nothing for anyone to see that our health is bad, it's only what we tell them. I get many calls from family and friends with the old saying, "You must not be too sick since you have been out most of the day."
     One doctor I had, listened to my complaints then said, "You don't look sick." I couldn't stop the tears and he was wondering what was wrong. I told him my husband died from cancer after the ER doctor told him he didn't look sick and sent him home to follow-up with another nut that said basically the same.
     The main thing is you know what your condition is and you don't have to justify how you feel. Take care of yourself and don't hesitate to rest when you are tired. Best to all. amelias@erols.com


Amelia's November 20 reply to David A's November 20, 2002 - Hi David, Boy, you sure had my mouth watering. If I had any Jimmy Dean sausage in the freezer I would have cooked some. As far as the sodium, sorry, maybe my brain blocked the actual amount per serving. Nevertheless I enjoyed every bite. I will try to locate low-sodium Butterball sausage that Chuck suggested. Take care, best to all. amelias@erols.com


Scott Brown's November 21 reply to Chuck's November 20, 2002 - Hi Chuck, I think Tylenol is okay. That is what they give heart patients in the hospital. If you are taking at lot of it, you will want to consult your physician. Also, you might way to rule out a touch of gout, particularly if the joint pain is in your lower legs. Thanks, Scott B. kitchenerguy@hotmail.com


Scott Brown's November 21 reply to Jaci B's November 20, 2002 - Hi Jaci, I can sympasize the devastation caused by CHF in a family. You have several serious issues and I would suggest you treat them all separately. The root cause may be your husband's CHF, but the solutions to each problem are not likely related. The ICD story is a real nightmare. You have a few courses of action: Do nothing, a legal challenge would be stressful; Get a lawyer and file a lawsuit which might cost money, however, if a lawyer thinks you have a case they may be willing to work for a percentage of a settlement; Approach the company with an outline of reasonable compensation like your mother's-in-law plane trip. Submit the total to Guidant and see if they cover it. The worst they can say is no. Then you can decide if you want to get a lawyer. Guidant should be reminded that this would not be a very favorable story if it was printed in the paper. If the amount is reasonable, they may just pay it. Did you ask?
     There are so many variables here, advice is difficult to give. Here are some suggestions I would make. In Canada, social workers are usually plugged into government programs which may be available. For example, could you or your husband qualify for disability? I think the US system is similar?
     Count on the worst case scenerio. Assume that the CHF if going to get worse over the long-term. This is a sobering thought to come to grips with. If it turns out your husband's condition improves, it's a bonus. Make your decisions based on this assumption.
     Enjoy the time your family has together. Support each other and stick together. You can still accomplish much more as a team than as individuals. Lots of love could be the glue to hold everything together. Hopefully, by posting your e-mail, you have helped others.
     I noted 2 things. If you have an ICD, make sure the hospital or clinic that installs the device goes over where the device can be serviced. If this was established in advance, the problem likely would not have occurred. When an emergency situation happens, this is not the time to be figuring out who can pull up the stats. Do not use e-mail for important medical answers. Use the phone and take good notes. Take special note of the individual(s) you speak to. You may need to refer back to something they tell you one day.
     Feel free to send a personal e-mail to me if you wish to discuss this further. I do hope everything works out. Scott Brown. kitchenerguy@hotmail.com


Jon's November 21 reply to Jaci B's November 20, 2002 - Hi, As usual, Scott have some good things to say. :-) However, I'd like to respectfully disagree with a couple of things.
     Making decisions based on worst-case scenario can hurt you as much as help you. I think it is best to learn absolutely as much as possible about your situation and its most probable consequences, then plan for that. You can make unwise financial decisions when always planning for the worst. Serious chronic illness is a queer duck and can always flap its wings in an unexpected direction, but play the odds as much as possible; and that means knowing the odds first.
     Second, always try to get e-mails from everyone regarding legal and medical situations. E-mails may be admissable in court for certain things and hard drives may be subpoenaed. Phone calls leave a record of their existence but prove nothing about content. I always try to make a call and specify on the phone that I want an e-mail sent to me immmediately confirming whatever was agreed on during the call. I print them out and file them as well as backing up all my e-mail files from my hard drive on 2 separate CD backups, using a CD burner (they have gotten cheap lately).
     On to your specific situation, please note that I am not judging anyone in this situation: not you, not your husband, not Guidant, not any doctors, not anyone. You might want to consider that I have heard as much wrong information from doctors and nurses and lawyers as I have heard from patients. Don't assume that anything you have heard or overheard is accurate. I am not kidding. It's a lethal mistake.
     Also, suing a company usually means hiring a lawyer at over $100 per hour, hiring a private investigator at over $50 per hour, and paying 10 to 25 cents per copy for thousands of pieces of paper, plus shipping charges on same. I have been part of a federal lawsuit and it is unbelieveably expensive. There are dozens of other costs, some of which may be borne by the legal team, but many of which will come out of your pocket or be added to your legal bill. Paralegal fees alone mount to the sky.
     Remember that we are considered partly responsible for our own medical care. That means finding out things about our treatments on our own whether a doctor tells us up front about it or not. That is a card that can be played against you later if you go the legal route, regardless of fairness. Obviously, there are pros and cons to that route. Please find out what they really are before deciding either way.
     Finally, in my purely personal view, until you forgive everyone involved, your life is indeed ruined. It does not have to be. You don't say whether your husband's ICD has fired since these events or not. If so, did it save his life? That would be a positive. If not, why have anxiety levels not eased for you at all, if not for him?
     At some point, you must make a personal, conscious decision to get past this and move on. No one can do it for you and no retribution will do it for you either. That's purely your call, but staying heavily involved in past events by focusing your current actions on those past events leaves you miserable. So why do it? That sounds trite but it's an often overlooked truth. People can do terrible things to us but it's usually we who choose to let that cloud hang over our heads the rest of our lives, not those we feel wronged us back when.
     I know it's not as easy as all that but I also know it can be done; only if you decide it is the right thing for you to do. Again, purely your call. I wish you the best, regardless. Jon.


Scott Brown's November 21 reply to Lew's November 20, 2002 - Hi Lew, I'm sure you realize this: you are preaching to the converted! We all have to change eating habits, change social habits (diuretics), change our outlook on life (shorter?), change our goals, our expectations of our spouses, etc.
     It sounds to me like you need to let the people you deal with at work know about your disability. The constant fatigue, etc. My coworkers are so understanding. They insist I do not push myself and they are very understanding when I show up late or need to leave early. Maybe I just work at a good place, but everyone has been fantastic since they found out. Some people might find it a breach of privacy. However, it really helped me. Take care, Scott B. kitchenerguy@hotmail.com


Jack D Brown's November 21 reply to Jaci B's November 20, 2002 - Hi Jaci, If what you say is true, then why haven't you initiated a lawsuit? With all the corroboration and documentation you seem to have, most lawyers would be fighting to take the case. Of course, none of the new ailments you claim can be attributed to what happened way back in May. If you don't want to file a lawsuit, then I suggest you both just get over it. maddjak@hotmail.com


Robert, November 21, 2002 - Hi, Your site is the most informative I have come across. It would be terrific if the universty educated morons they call doctors could be as explicite as your Manual, but then it would cost them time, which equals money. You would think that they would be satisfied with one boat on the harbour instead of a fleet. Regards, Bob Fletcher. 1snake@tpg.com.au


Tom S' November 21 reply to Lew's November 20, 2002 - Hi, There are at least 4 people who attended our church who "looked great" right up until the day they dropped dead. I still get a kick out of people who come up and look at me, and almost ask me why I'm not dead yet. Six years ago the whole congregation was informed that I had a very short time to live, so naturally there was an outpouring of sympathy and offers of help to my wife and family. Six years later I actually feel guilty at times that I am not dead yet.
     In fact about a year ago I had one of those intimate conversations with a friend of mine who at the time did not know he was dying of a of cancer. When he was made aware of it he was told it was particularly virulent form of cancer and he and I both discussed the inevitable outcome. Because he was so open with it, and knew of my situation we could talk about it and prepare him, his son, and wife for the day of his death. We also worked on positive things like getting him through the Social Security Disability maze and getting his personal affairs in order. He too looked marvelous almost to the day he died when finally his struggling body and heart said it could take no more. He went into a coma and died a couple days later. Two weeks before that he and I were joking about our "ghoul pool" in which the widow of the winner gets $10. Guess who had to pay off?
     Ever since I was diagnosed and dubbed a terminally ill person, I have tried to keep the entire thing as light as possible. I openly discuss my impending death with my children and spouse, but I also note that no one knows the time or the hour as so well stated in a Biblical passage.
     Another friend of mine, who has been on the terminally ill list for about as long as I have, recently lost his very "healthy" wife who dropped dead of a heart attack after doing some yardwork. As a matter of fact, we were given the "killer mower" after he had to move in with his daughter and give up his own home because of his wife's death. That is the third totally unexpected death at our church. There was another one but he got clobbered on the noggin with a branch of a tree while he was joggin. In fact, that was the son of the man who's wife just died.
     When someone asks me how I am feeling, I simply state I am "vertical and breathing," which I think covers the subject adequately without having to go into a lot of detail. Meanwhile I know the clock is ticking and what little muscle my heart has left is working harder than ever to keep me looking marvelous in the eyes of others. bigheart@muchomail.com


Cindy, November 21, 2002 - Hi, I have Medicare. Myhusband has BC, BS PPO. This past April had to go to an internist and cardiologist for some heart-related matters. I had not seen a doctor for over a year. The cardiologist did an echo and I supposedly now have mild mitral valve regurgitation. Now, this is new. A few years ago, I didn't have it. Neither the cardiologist nor the internist ordered blood tests to see if there were any abnormalities. I questioned the cardiologist and he said he could tell by my nails so that blood tests were not necessary.
     Two months later my husband went to an internist for a check-up. Now my husband has no problems but the internist and cardiologist ordered a complete blood chemistry panel, CB, the works. My question is, why was this not done for me? Is it because I have Medicare or is it a male/female thing?
     I have since found out that an acquaintance of ours, a senior who is on Medicare, no longer has to have these blood tests that were required for the last however many years. The cardiologist said that they were no longer necessary. The reason given, was something like you have a newer pacemaker so this one doesn't require those blood tests. My question again is, is this because of Medicare restrictions that hospitals are imposing on the doctors?
     I wonder if these are just isolated happenings or if something is going with Medicare coverage and hospitals limiting testing to only critically ill. cindy19335@yahoo.com


Jon's November 21 reply to Cindy's November 21, 2002 - Hi Cindy, I can't see into a crystal ball to know your personal situation. <g> However, I know that hospitals have little control over anything Medicare related. Medicare is a government bureaucracy so complex that no one - doctors, hospitals, billers, health insurers - is really quite sure if they are in full compliance with Medicare regulations.
     Because we get care at a hospital, we tend to lay all blame at their door. However, study the system! "Hospitals" do pretty much what doctors, insurers, the government, and lawyers tell them they have to do. If a doctor says test for it, a hospital will 999 times out of a 1000 test for it. I am not sayig hospitals are lily-white, no siree. However, let's blame them for what they should be blamed. ;-) Let's put the blame where it belongs, whether on Medicare, doctors, patients, health insurers, or hospitals.
     I know you are seeking something wrong in this lack of blood testing, but are you sure you need blood testing? You well may, but what kind and why? Find answers to that and you'll then know whether to worry about who denied it to you. Did your husband need blood testing? A complete physical exam (if that's what he had) usually includes a wide range of blood testing. On the other hand, being seen for a specific health problem generally gets more specific testing to that condition.
     Maybe you needed testing and may still need it. Try to find that out what tests may help manage or guide treatment in your individual health situation and then, if such tests are indeed needed, go get 'em. If none are needed, that's even better! My CHF doc doesn't blood test me except occasionally for BNP. I just get the blood testing needed because of my heart meds, not because of my heart condition itself, and my regular doctor can do those.
     If memory serves, most of my blood testing at diagnosis was because they didn't know it was heart failure and they were eliminating other possibilities. Now, just one blood test is needed for CHF - the BNP.
     There is some info on blood testing at our Routine Blood Testing page. Medicare testing requirements are online if you have the stomach to wade through their new site to find them. I haven't bothered relocating that info yet due to their poor site redesign, sorry. Jon.


Joe S' November 21 reply to Dee L's November 20, 2002 - Hi Dee, I have another weird story. I was having a bad reaction to a med one night. I called my CHF doctor's office and they never returned my call because they thought it was a hoax. He and I have the same names. However, the next day the nurse called back and I got more help from her than anyone. Go figure. Joe S. jes@gbis.com


Paul Massey, November 21, 2002 - Hi, My precious wife Judy (age 58) was sent to the hospital on October 14 with severe symptoms of CHF. This came as a total suprise since she was extremely healthy until this past spring. Doctors think she suffered from a virus that caused a cardiomyopathy. She had minor symptoms that we didn't recognize at the time during the summer.
     Her EF when she was admitted was 10 to 15% and and she could hardly walk across the room. Her heart was enlarged significantly. She had water in the abdomen but none in the legs or feet, plus some nausea and vomiting. An ICD was implanted and she was placed on 12.5mg Coreg, 10mg Accupril, and a diuretic. She was released on October 22.
     She seems to me to be improving slowly but surely. She can now (4 weeks after release) walk for 5 to 6 blocks at a good clip with me every evening over a fairly level route, climbs the stairs several times a day to the second floor of our 2-story house without getting out of breath either walking or climbing stairs, dresses, bathes, does her hair, goes out to dinner (twice), went to church last Sunday (I am a pastor) and generally feels better. She still gets tired fairly easily and says her brain feels foggy. She is scheduled to start a heart rehab program in a couple of weeks.
     My question: Is her EF likely improving some or is she just compensating or possibly a combination of both? Her next echo is not scheduled until late January. What is her likelyhood of eventual significant improvement? We have thousands of people praying for her all over the world. She was a very active person, as founder of the Missionary Society of Christ The Healer she took groups of doctors and nurses to East Africa, and as Georgia head of Women's Aglow. She is wanting very much to get on with her life and her calling. Thanks. Every Blessing, Paul Massey. paulm@piag.org
 
Jon's note: Out of curiosity, why isn't she posting?


Dee L's November 21 reply to Jaci B's November 20, 2002 - Hi, I'm so sorry you and your husband have gone through all this. I know how unpleasant it is when my ICD fires just once. It's lifesaving I know, but unpleasant all the same. I can't imagine how awful the experience was for you both. I'm not sure what I'd do in your shoes. All I can do is send my hope that things will be better for you both in the future. Dee L. gardengirl33@juno.com


Mike's November 21 reply to Dee L's November 20, 2002 - Hello Dee, I seriously doubt your doctor failed to respond to the ER because you will be enrolled in Medicare in a few months. His associate advised you to go to an ER. It seems the care you received was more than adequate. It is more than likely your doctor could not be reached that day. I have been in the same position more than once, with and without Medicare coverage. Please consider that doctors are people too! They have families and commitments outside their medical practice, and like other people they cannot work 24/7.
     After you give the experience that so unnerved you some serious reflection, you may want to call your doctor and calmly tell him how vulnerable you felt because he was not there in your hour of need, and he will tell you why he wasn't there.
     Finally, in all probability if you inquire, you will find he is a Medicare participating physician. I am a heart transplant recipient and I know without the heroic committment of the doctors, nurses, technicians and all other people committed to saving lives, along with organ donors and their families, there would be no me. I hope these few words help you to understand some of the variables in medical treatment for everyone. viadotcom@aol.com


Jon's November 21 reply to Mike's November 21, 2002 - Hi Mike, I certainly respect your views and agree with many of them. However, I thought no one at all returned the ER doctor's call for Dee. Someone is "on call" at the medical practice for that time period that day and they are obligated to make themselves available the day/hours they are "on call." At least, that's what I think happened. The on call doctor was not responding and that's a deadly serious problem if that's what happened. If not, someone please pull my foot out of my mouth. <g> Jon.


Norma's November 21 reply to Lew's November 20, 2002 - Hi everyone, I just want to add my comments on looking so well some days that friends and family feel you are not quite as ill as you say you are! When I came back to Florida for the winter, everyone here said, "Oh, I'm so glad you got over the illness you had last year, you look so well now." That happened to be one of my good days.
     When you leave a social gathering early because you are so darn fatigued, many just don't understand and think you're not having a good time, when the truth is that if you don't lie down, you feel like you will fall down. Going out for dinner is agonizing as our friends tend to sit at the table for a couple of hours, the restaurant is usually noisy and one has to make conversation and look pleasant while you are usually so tired that you long for the peace and quiet of home.
     It is impossible for anyone to understand this unless you go through it. By the way, has anyone else lost a lot of weight since having CHF and cardiomyopathy? I wasn't overweight to begin with, but despite eating very well, I find it hard sometimes to keep up to 128 lbs, which I feel is my ideal weight. I have lost 20 lbs over 4 years. Is it the diuretic, do you think? Regards and best wishes to all, Norma. normadroz@aol.com


Jaci B, November 21, 2002 - Hi, What happened exactly would take me an hour to explain it but I will do the best I can. Believe me when I say I am an expert on this thing now. I have probably more knowledge than the doc since I have spent 7 months studying it and my health issues. In the Guidant Model 1861, which is run by Zoom computer software version 3.1 (although it may be 3.2 now), are 3 zones. Zone 1 is a straight number - his was 185 - go straight to defib. Bam! In zone 2, if you click on it to check it and it is not turned on previously and and is not programmed what exactly to do, it automatically goes to 145, straight to defib. Bam! In zone 3, same instance but 125 for defib, resets to lower numbers, thereby not ever getting up to 185, just repeatedly going off at 125.
     They should have been able to check it a lot sooner than flying him all over. They had the right computer right there at the first hospital and I think Guidant should have been able to tell them that when they called, or the doctor in Spokane. Nobody knew there was one in the same building.
     The next morning at Sacred Heart in Spokane when he woke up and urinated, just the pleasure of that first morning urination sent his heart up to 125 again. I came walking into his room and he is screaming. The ICD is again going off repeatedly. He s 6'2" and 225 pounds, a big guy. He was up out of that bed every time and crying again and still not knowing why this is happening. I begged them to do something, anything, just stop these, they finally turned off the defib with a magnet and waited for the Guidant rep to get there.
     It has happened to no one else that I know of. The doctor just shakes his head and plays dumb. No one wants to get anyone in trouble. We did find out how it all happened but we conveniently did not see his doctor this last visit because the rep is now doing the interrogations. The doctors are not knowledgeable enough, is my guess. Jaci. onthegreen@owt.com
 
Jon's note: saying "they" is confusing. Maybe you could specify ;-)


Mel G's November 21 reply to Paul Massey's November 21, 2002 - Hi Paul (and Judy), I was saddened to hear that you're newly facing cardiomyopathy and CHF. I suppose there could be every possible future scenario with your wife's health, however no one can predict exactly what will happen. One thing you can do is read this site from top to bottom and go with the odds.
     When I read about Judy's health, it struck me as so similar to mine I thought I'd let you know how I've fared. Last October 17th (2001) I was airlifted to a cardiac intensive care unit after a local ER found me seriously ill with DCM and CHF. Until that day I considered myself a healthy, fit, 44 year old active mother of four.
     I've had all the usual regime of heart meds, and found that through the Christmas season I was feeling okay but lacking strength. By December, my EF had risen considerably, which pleased my cardiologist, but I was fairly slow and exhausted easily if I tried to resume my normal activities. I could only walk about 500 meters before I turned for home. I just took it a bit at a time, without pushing too hard. By March or April my EF was 45% and I was able to walk 2 to 3 kilometers. By June I was able to do more and more, and my walk was 5 kilometers.
     Today (one year post-diagnosis) my EF is 52% and I can walk 10 K and still have some energy to do things in the afternoon. My cardiologist has kept a close eye on me and is satisfied that I am doing well. He has said that I am on a "high plateau" and we have hopes that my health will remain like this for a few more years yet. There is usually progression with this condition, but it is far more slow and subtle than it used to be. Very best wishes for Judy to improve and stay well. :-) falmouth@bigpond.com


Joseph P's 11-21 reply to Jaci B's November 20, 2002 - Hi, I would just tell the doc to take the ICD back and see if you can make it without the device. Be happy he is still alive. joeandol@shawneelink.net


Sherrell G's November 21 reply to Barb D's November 20, 2002 - Hi, I tried to e-mail you and it came back as undeliverable. I was lucky and received my new heart 3 months ago. I just wanted to let your husband know I'll be thinking about him. If he would like to contact me, please have him do so. sherrellgay@juno.com


Jaci B's November 21 reply to Scott B's November 21, 2002 - Hi Scott, We did inquire at the time of the implant and we were told by everyone that we could receive help anywhere we were, that these computers were in all communities or nearby, and that a rep would be paged after a call to Guidant and one would come to you with the computer if there is not one nearby. It wasn't true. I was still in the process of surveying all the nearby hospitals here in Tri Cities. I am a very thorough person.
     I immediately after the implant ordered a Medic Alert bracelet for him, had it rushed to us. I contacted Guidant by e-mail and they told me Spokane, Walla Walla, is much closer and the hospital there has one but they did not know it, nor did they tell me our own local cardiologist's office has one, which is a mile or 2 from our home.
     The point was that I could not count on anything they told me. I did call Guidant, last week. The first 2 persons hung up on me, when I asked to speak to someone in the Legal Department, the 3rd person who answered let me explain the situation, got the name of someone from their legal department and I asked for him to call me because I wanted to request that the costs we incurred be reimbursed. He never returned my call.
     I am waiting to hear from an attorney but he will not get hold of me until after Thanksgiving. He is in the middle of a really big trial right now and I told the gal it could wait till then. I have gathered all my documentation, the tapes, the costs of everything, the dates my hubby has left work and functions, the drives where we have had to pull over and let him calm down. The panic attacks are because he reacts to every little tiny stress with paralyzing fear. He is afraid to die, especially now that I am so nonfunctional. I have always had my own career and I have been taking care of our nephew since I got custody. Anyway, my husband is terrified of leaving us with an inability to take care of ourselves. My insurance is crucial now to me, and it is through his work. It just is such a scary place to be. onthegreen@owt.com


Jon's November 21 reply to Jaci B's November 21, 2002 - Hi Jaci, I am sorry to be so dense but wouldn't your local cardiologist have to have an interrogator unit so he could care for his patients? Also, how many times did the ICD fire before you asked that it be turned off? I am just curious. Jon.


Jaci B's November 22 reply to Jon's November 21, 2002 - Hi Jon, Our local cardiologist had a computer he could have grabbed and gotten to us probably at Walla Wall, avoiding the air flight and everything else I am not sure exactly when Guidant got the call, it should have been the first call they made. We were treated at every stage as if it was not anything to worry about. The ICD fired 7 times before he got loaded into an ambulance. We were out of town about 40 miles away at the horse races. My hubby had won the trifecta, he was excited because he just won it. Jaci. onthegreen@owt.com


Jon's November 22 reply to Jaci B's November 22, 2002 - Hi Jaci, I was just wondering why no one - you, EMTs, doctors - assumed the local cardiologist had the system and called him to meet you somewhere. I am not criticizing, just curious. Personally, after hit number 3 or so, I'd have been grabbing someone to turn the sucker off, and taken my chances. Maybe I would have reacted faster than most people due to my past personal experience with serious industrial injuries in my workplace, I don't know.
     I do not know what the protocol is for such a situation with Guidant, Medtronic, or any other device manufacturer. I also don't know what is actually possible for them in that situation so I can't say what they "should" have done. I honestly don't know if they are able to track every interrogator in every town. It would seem a terribly complex task, especially since the machines are highly portable and could be moved without anyone notifying the manufacturer, whether or not they are supposed to do so. People will be people.
     I wonder about people hanging up on you at Guidant when you called them. How upset verbally did you get during those conversations? Naturally, this is very personal to you, but sometimes we have to step back a bit emotionally for brief periods to get things done efficiently. Again, I am not criticizing, I just realize how upset anyone (including me) might get on such calls, especially if a person on the other end did not seem sympathetic. It can be hard to get the "right" person on the phone sometimes and that makes it even more difficult.
     I know that every situation is more complex than it seems online - for everyone concerned. That's why I hesitate to say too much with certainty. I do know that if your husband's ICD has been successfully replaced (obviously you have insisted on and received this action), his fears should be slowly calming down as time passes without further improper firings. He has to adjust or kill himself with worry. I am sorry if it sounds harsh, but he does have to make the conscious choice to get on with his life. If he really cannot, maybe he should consider having the device inactivated so it can't fire. Then, he would only have to worry about his heart's rhythm, not man-made problems to boot. I would not do that and do not recommend it, but it is an option.
     I certainly sympathize with a terrible ocurrence in your lives. However, half a year later, well, life goes on. I assume he has given up gambling. ;-) Keep us posted. Jon.


Lorraine's November 22 reply to Norma's November 21, 2002 - Hi Norma, Your reply to Lew fit my husband's situation. It's hard to know what to tell people when they ask how he is doing. Most times I just tell them he is hanging in there. He doesn't look that sick but is so tired all the time and doesn't get out much.
     About weight loss with CHF, he was overweight all his life until CHF. He has lost over 100 lbs, from 275 to 170 now. Lots of it was after he had a mild stroke a couple of years after CHF. He had no appetite until he started on IV therapy (Primacor) last year. His appetite is good now but he still does not gain weight, just fluid. We have learned to take one day at a time and be thankful for that. This site has been very helpful for me. Thanks Jon and everyone, Lorraine. gandlsimpson@msn.com


Dee L's November 23 reply to Jon's November 21, 2002 - Hi, Not to worry Jon, your foot isn't anywhere near your mouth. There are 3 cardiologists in the practice I go to: Dr. A, Dr. B, and Dr. C. Dr. A is the doctor I see on my regular visits. When I called the answering service last Sunday morning I was told that I would recieve a call back which is the usual procedure. Later, the nurse for Dr. B (apparently he was the doctor on call) returned my call and told me to go to the ER. I went to the ER. What consequently happened was in my previous post. I didn't make any of it up, Mike (crossing my heart). Believe me, I understand that doctors have lives outside their practice. I also understand that when they are covering for another doctor they have an obligation to the patient. Dee L. gardengirl33@juno.com


Vicki, November 23, 2002 - Hi, You hear so much about family history and genetics with cardiomyopathy, but with my family it's a mixture of hypertrophic cardiomyopathy and DCM. So in this case where does this leave us genetically? I hope this makes sense. Vic. art_vic_payne@yahoo.com.au


Jon's November 23 reply to Vicki's November 23, 2002 - Hi Vicki, That leaves you in a very uncertain spot, unfortunately. I would say that a yearly echo would be a very good idea since it is the test used to initially diagnose both conditions. Honestly, I don't know the risks genetically. As I understand it, it varies from family to family. A good CHF specialist is your best bet to get accurate information on this one, although maybe someone else here can shed some light on it for us. Jon.


Scott Brown's November 23 reply to Paul Massey's November 21, 2002 - Hi Paul, I have bad news for you. There is a very good chance your wife could be beating you around the block in a few months if she continues to exercise! Every case is different, so there are no promises in life. However, it was certainly my experience that the meds can bring you back to being pretty active if you keep at it. I was in a cardiac rehab program, and that really helps to keep exercise as a regimen.
     I'm sure most people with CHF will agree with feeling a little foggy in the head once in awhile. It is most likely a side effect of one or more of the meds. In my case, I still feel a little spacy, but I am either used to it or my body compensates better.
     My family doctor told me I was not going to be able to participate in the sports I enjoy any longer. It is just over a year since I was short of breath in a resting position. Today, I actively participate in basketball, badminton and volleyball. I also like swimming. All this is with the full blessing of my cardiologist. The cardiac rehab people will likely work with your wife to define her workout limits.
     You were asking if your wife's EF will be better in January. Please read all of the information on this board about EF. You will see that EF is not necessarly closely tied with physical ability or feeling of well-being. It is a useful measurement and a benchmark. My EF is around 23%. I definitely feel the effects of my CHF more when I am at rest than when I am active.
     Finally, nobody on this board is going to be able to offer definitive advice. I can say that if the enlarged heart was caused by a virus, there is a pretty good chance the heart will return to normal size. I have read that 1/3 to 1/2 of cases repair themselves after a year of treatment. Jon may have better statistics to share.
     Please encourage your wife to post on this site. You are also welcome to e-mail me if you have other questions. Thanks, Scott Brown. Kitchenerguy@hotmail.com


Scott Brown's November 23 reply to Dee L's November 20, 2002 - Hi Dee, The easiest things to do would be to advise your cardiologist that you were trying to contact him. Ask why you never received a call. I agree that they should be available 7 x 24 if that is what they are advertising. Most doctors use pagers. There are lots of things that can go wrong with paging systems: problem with the paging servers, the service carriers, the battery in the pager, not to mention turning it off and forgetting to turn it back on. This stuff all happens, and it is all very honest and legitimate. If your physician is aware of what happened, they may be able to use a pager and a cell phone as a backup.
     I would like to think a doctor working on call would never ignore a page, especially multiple pages. I hope you find a reasonable explanation and this incident helps to improve the system for others. Thanks, Scott B. kitchenerguy@hotmail.com


Scott Brown, November 23, 2002 - Hi, I have been following the posts here for more than a year now. I have noticed a lot of stories about improved health on the board, and not so many about degenerating health. We complain about the statistics in the literature and the widespread ignorance about CHF in the medical community. Is it possible that the current regimen of drugs for CHF has made such a profound impact on our disease that all previous statics are useless (outside of baseline measurement)?
     It seems too many people are beating the odds with CHF for this to be coincidence. Just a thought to provoke discussion. Scotty B. kitchenerguy@hotmail.com


Jon's November 23 reply to Scott Brown's November 23, 2002 - Hi Scott, Nope. That was the short answer. <g> Here goes a longer version:
     I don't want to bring anyone down but over a dozen regulars (in my e-mail if not actual posters) have died here this year so far. At least 5 others have required heart transplant. Now, that seems small when you realize that this web site attracts a huge number of readers. Currently, the site overall gets roughly 3.3 million page views a year.
     However, remember first that this is largely "repeat business" and second, we are a distinct subgroup of CHFers overall: readers here are all online, self-motivated enough to seek lots of information on their own, well enough to feel like getting on the computer online to begin with (that leaves out a huge number of CHFers), outgoing enough to post in a public forum, and willing to wade through rehash after rehash of the same old issues to glean the few new nuggets that happen along. That narrows the field more than you might suppose. Thus, while we seem to be doing very well, many of us are not (those who lurk may not do nearly so well as those who post) and we are not truly representative of all CHFers everywhere.
     Hospital admission stats and death certificate stats paint a picture that is not pretty for CHFers as a whole in the United States. We still die often and quickly. In my view, this is largely due to doctors' refusal to learn and obey guidelines and patients' refusal to make the necessary life style changes and prod their doctors into action. Still, while meds have made a huge difference in our odds of staying alive and living pretty well, they have not yet found anything even close to a "miracle drug" or procedure that pulls the proverbial rabbit out of the hat for us CHFers.
     Frankly, I - along with may of you - wonder if the same drugs that do so much for us also mask our improvement with nasty side effects of their own, including significant fatigue, lightheadedness, insomnia, nausea, mental and memory losses and more. So, we don't really know how well we feel, so to speak. Catch 22: If we stop taking the drugs, our heart gets worse and we get CHF symptoms again; if we stay on the drugs, their side effects slow us way down and make us dopey.
     Mortality is equally tricky to grab hold of and view: it all depends on how you pick your time period to study, whether the patients are on the full drug regimen, how old they are (you can have CHF and still die from old age instead), what other health problems they have, what caused their CHF, how thoroughly they have improved their life styles (diet, exercise, stopping drinking, smoking, etc.), and lots of other variables.
     So while stats are of dubious use due to the way researchers set them up, current heart failure therapies have not by any means made CHF a reasonably "safe" illness. I am sorry to inject a harsh note but I call them like I see them, and I still see CHF as a lethal or highly dangerous condition for a large percentage of CHFers. If we get with the program, our odds improve a great deal, but we aren't out of the woods by a long shot. ;-) Jon.


Joseph P, November 23, 2002 - Hi, I thought I had problems with my ICD and I e-mailed Medtronics, and the next morning I received a call wanting to know how they could help. It turned out I was getting arrhythmia and it was not the ICD but it made me feel good that they were concerned and that they acted quickly. joeandol@shawneelink.net


Jon's November 23 reply to Joseph P's November 23, 2002 - Hi Joe, I agree that it's great! However, a 12 hour response time wouldn't help someone in Jaci's shoes. ;-) I have had excellent luck getting help of various sorts from both Guidant and Medtronic (more from Medtronic), but then again I don't have an implanted device so that means virtually nothing! Jon.


Ahmed Hakky, November 23, 2002 - Hi, I want to inquire about the latest medical or surgical treatment for pulmonary hypertension and right sided heart failure. holydr@hotmail.com


Ben B's November 23 reply to Jon's November 23, 2002 - Hi, I don't know if I really disagree with anything you say or not. I also agree that poor treatment and poor life style changes account for a great majority of the deaths due to CHF. Of course, I cannot say that I disagree with the fact that this is a serious disease and still kills people and requires heart transplant. I take my disease very seriously and am certain it will shorten my life to some extent. Nobody should think that this is like the common cold.
     However, this does not negate the fact that these survival statistics are truly ridiculous. If you say over a dozen people have died in the past year that is very sad. I feel for their families. But the mortality rate overall in the US is about 9 out of 1000. I'm sure more than 1000 people post or read here, repeaters not withstanding. I personally know of over 10 family memebers and acquaintances myself who have died in the past year of many different causes (including my father). I believe that out of any large grou! p of ages 20 to 90 there will be several deaths during any years. For the CHF statistics propounded by the medical community to be anything but ridiculous, thousands or at least hundreds of posters here should have died in the past year. Additionally, I do not believe that people involved in studies reflect a group any more random than this Internet site. Readers of chfpatients.com may be a somewhat select group, but I would posit that it is select only in the fact that its members have access to a computer and a desire to learn about their diseases.
     Just because a person reads here doesn't mean they are going to follow instructions all the time. I am a case in point. <lol> To the contrary, some people posting here feel they are gathering information to treat themselves on their own. More than once I have read people stopping medicines on their own, or completely disregarding medical advice. This only goes to show that people do research and gather very different conclusions.
     Also, these studies are so dishonest in many ways. My father died from a staph infection which killed multiple organs in his body. The hospital attempted to say it was CHF due to CAD, both of which he had but neither of which killed him. It required a lot of work, and multiple medical opinions to get them to amend the certificate of death they had fraudulently filled out.
     Do not believe anything from a study of death certificates. In addition to the big lie we had to fight to correct on my father's death certificate (he managed his heart failure very well and would still be alive today if he had not recieved a staph infection in the hospital), my friend's brother died of a drug overdose and they put heart failure down as the cause. Heart failure is often listed as the primary cause of death for a multitude of other contributing illnesses. I'm sure when Bob Hope dies at 120 or something, they will put down heart failure as his cause of death.
     Once again, I know you are generally upbeat and not trying to throw cold water on anybody's hopes. I know CHF is a serious problem, but I still do not believe it is anywhere near as fatal as these studies would indicate. Somebody is going to have to show me a lot better structured study and evidence for me to believe any more than 5 to 10% mortality. bdbrinkman@juno.com


Jon's November 23 reply to Ben B's November 23, 2002 - Hi Ben, You disagree with conclusions drawn by researchers from numbers. I have no problem with that because I also disagree with those conclusions. However, I respectfully take issue with your conclusions as well. ;-)
     Please don't take too much offense but once you decide to throw out an entire class of numbers or statements like death certificate causes of death on the basis of mistakes you saw personally, you pretty much end all possibility of further discussion. There are such mistakes, maybe lots of them. However, some may not really be mistakes but rather differences of opinion, so go easy. You can very rightly speak of individual cases of inaccurate causes of death being listed, but the majority are probably accurate and are the only thing we have to go by anyway.
     Try looking up numbers - not statistical analyses - just gathered numbers that are routinely tracked from which you can draw your own conclusions. Start with 5 years worth of USA or any state-wide hospital admission diagnoses, death certificate primary and contributing causes of death, etc.
     About numbers and readership here, you are off base. I only know when "regulars" die. I stated that in my post to Scott but it slipped by unnoticed, I think. A thousand of my overall readers could die this year and I would never know, Ben. I only hear personally from a tiny fraction of my readers, you see. No wide conclusion of any sort can thus be drawn from "regulars'" outcomes because I hear from so few. My point earlier was meant to be that because these outcomes were only from "regulars" who contact me directly (a tiny percentage of overall readership), the numbers I mentioned were really quite high.
     Also, about who probably posts and reads here: I have discussed this with a CHF doc who is a published reearcher. He pointed out some things I had never considered. It's too much to go into here, but this group is both more select and more varied in different ways than you might believe at a glance.
     Maybe because of your strong reaction to the statistical analyses in the press, you have a case of somewhat wishful thinking. There's certainly nothing wrong with that. However, nothing I have seen makes me believe in a number as low as you mention. I wish I did. I am sorry. I do believe we CHFers are living way longer and also way better, but I also am sure that 5 to 10% is undercounting by quite a margin. Hopefully in a few years we'll all be quoting your numbers and they will be true! :-)
     I hope this makes sense. I do not have time to proof read it. Jon.


Gino, November 25, 2002 - Ciao Ben and Jon, I would say my opinion about your dialogue about CHF prognosis, remarking that: 1) in the community setting, about 50% of subjects with left ventricular dysfunction (low EF at echo) have no symptoms and many of them do not know they have this, 2) Misdiagnosis (patients who are considered to have CHF but who really do not have CHF) is consistent, 3) In the community, CHF is more often an illness of older people (see Senni, Circulation 1998 for example) and have an ominous prognosis.
     I'm completing the follow-up of the cohort of patients admitted in 2 hospitals with discharge diagnoses verified in accordance with the strict clinical criteria of Framingham from 1996, and the preliminary results are that about 50% died within 5 year after their admission.
     Finally, accordingly with the results of a Scottish study (Stewart S, Macintyre K, Hole D. J. Capewell S, McMurray J. J. V. More malignant than Cancer? Five-year survival following a first admission for Heart Failure Eur. J. Heart Failure 2001;3:315-322) on consecutive hospital admissions in 1991, CHF was considered as malignant as cancer. Luckily, now we have a lot of therapeutic options to treat it and many cases with a substantial success. Ciao, Gino. gitarant@yahoo.com


John S' November 25 reply to Ben B's November 23, 2002 - Hi, There is a very good reason that death certificates appear to be highly inaccurate. In my state of Texas, we are legislatively forbidden from writing cardiopulmonary arrest as a cause of death, or even respiratory arrest as a cause of death; cardiovascular collapse is also not allowed. Really, these are useless terms in retrospective study but these terms were used for years on at least half of death certificates and perfectly useless for quantification of distal causes of death.
     In the case of your dad, I would want to know all the illnesses leading to his death. I don't know what the CA death certificate looks like, but a useful one might read: Hospital acquired MRSA as a result of CHF as a result of ischemic heart disease as a result of hypertension, hyperlipidemia, and smoking. The state is big on tobacco and alcohol use as they have their own check-off boxes.
     Write me. drjohnmd2000@yahoo.com


Joe S' November 25 reply to Scott B's November 23, 2002 - Hi, I think you, Jon, and Ben have the answer to CHFers' health in all your posts. It all boils down to life style changes. Too many people won't do anything, but want others to do it for them, and others can't. When I first came on this site I was in real bad shape, with a death sentence of 5 years. That passed 2 months ago and besides some bad days I can say I feel better now then I have for decades. Mostly that is because I chose to follow all of Jon's Manual, walk 2 miles every day (100 yards was my maximum 5 years ago), eat right, take CoQ10, etc. I even moved to a rural area in the eastern Sierras of California. I have my diabetes under control without meds through all of this while both parents and 3 others in my family have died from it. It doesn't take too much willpower to do these things, because I have very little, but it does take some determination. Joe S. jes@gbis.com


Bob N, November 25, 2002 - Hello, My cardiologist told me that the reason a lot of CHFers and heart attack patients die within a 5-year period is because after being diagnosed they are good for the first year. They take all their meds and go on the right diet and exercise. After the first year when they are feeling great, they go back to their old ways. They start eating the same old stuff and going back to their old ways. If we stay on our healthy life styles and keep on our meds we should live a long, almost normal life. Good luck, Bob N. bignick42@aol.com


Wayne, November 25, 2002 - Hi, If Scott and Ben are overly optimistic, and I think Jon has sufficiently argued the case that they are, then what are we to believe? I have read articles stating 5 year mortality at 50% and 70% but I believe that even Jon has posted comments pointing out that these data were mostly evaluated before impacts of current recommened drugs could be included in the studies. So where does that leave us? This is an interesting discussion, and certainly goes to the heart <g> of what we all want to know. whreos@earthlink.net


Jon's November 25 reply to Wayne's November 25, 2002 - Hi Wayne, That's an excellent question. It leaves us uncertain about average life spans for CHFers both overall and regarding different subgroups. CHF often comes with many accompanying illnesses even if they are not heart-related. Look at how many of us have diabetes, for instance. That skews numbers because it puts large numbers of - but not all - CHFers at higher risk of death and complications. Also, lots of us have arrhythmias but lots of us don't, too. Those with serious arrhythmias are a sizable group and are more likely to die suddenly than others. That skews overall numbers. This is a game that can go on and on and on simply because of the huge number of variables possible.
     That's why I really try to avoid talking much about mortality numbers. There are no good, reliable ones and I seriously doubt there will be for many years. I mean, if we can't even reliably decide on how long any individual CHFer will probably live, can we pretend to know how long CHFers as a group are likely to live? <g> Still, it is interesting to hear different ideas, isn't it? Jon.


Jon, November 25, 2002 - Hi everyone, Please read this! If I sat a large group of CHFers down - including you personally - in front of a CHF specialist or group of CHF specialists face-to-face, what would you want to talk about with them?
     This is very serious. I now have a list of potential topics, partly given to me by cardiologists, partly from your earlier responses, and partly from my own list of topics. I need real CHFers - you - to give me a sense of priority - what topics are most important to you and which are least important to you. Only about 12 will end up being covered.
     I am doing this by e-mail for strong reasons. If you want to help me on this - and I need your help - please e-mail me at jon@chfpatients.com and say that you want to participate.
     I'll e-mail you the topics. Then you can e-mail me back your priorities. The topics will be lettered: A, B, C, D, etc. You just send me an e-mail with a number by each letter, such as 1 for most important and 2 for next most important and so on. Example: I send you

A. topic: why didn't I become a doctor?
B. topic: why didn't I become a lawyer?
C. topic: why are all the handicapped spaces always full when I go to the store?
D. topic: why do doctors react so badly when I kick them in the shin?

You send me a simple list without any actual topics, just letters and numbers. Example: You send me

A. 4
B. 2
C. 1
D. 3

I now know that the topics you want discussed go in order from most to least important as:
Topic C, Topic B, Topic D, Topic A.
     If this makes sense to you, please jump in right now. I ask you to believe me when I say that this simple task is important to all of us with heart failure. If the method above does not make sense to you, e-mail me anyway and just say so. I'll send you the topic list, and you send it back to me with your priorities shown any way you want to show them. I will figure it out and include your views. Thanks! Jon.


Carole K, November 25, 2002 - Hi, I think, after watching my mother with CHF, prognosis is as individual as your hair color. You can't lump everybody together. We are all individuals and are going to react that way: mind, body, and soul. My mother had her first bout with CHF 13 years ago and was not classified until March of this year as "end-stage."
     Back 13 years ago she was very overweight and heavy handed with the salt. She lost the weight but never gave up the salt or made any other life style changes, so you can see that the 5 year prognosis didn't apply to her. You mustn't concern yourself with the numbers; just concern yourself with life, your life. You should follow your doctor's advice and direction but always remember God is in control. Thanks for letting me butt in, Carole. ckennedy@appliedtm.com


Scott Brown's November 25 reply to Wayne's November 25, 2002 - Hi Wayne, I also wonder if CHF mortality results are skewed because people are at increased risk of developing CHF as they get older? At an older age, there is an increased chance of other medical problems to contribute to a heart condition. Thanks, Scott B. kitchenerguy@hotmail.com


Scott Brown, November 25, 2002 - Hi Jon, What is you view on heart transplant? Would you consider a transplant if you were sick enough? For some reason I get the impression you would not. I have never heart you comment on this before. Thanks, Scott. kitchenerguy@hotmail.com


Jon's November 25 reply to Scott Brown's November 25, 2002 - Hi Scott, I thought I had answered this one so often by e-mail that I had a form letter for it but I can't find it now! <lol> I turned transplant down once when my CHF doc really thought it was time for one. However, that was at such powerful nudging from the Holy Spirit that I could not mistake it, and I got much better after a time. That's how I'll decide if the time comes again: pray and listen to what I am told to do.
     In general, I have definitie views on heart transplant. For the seriously ill CHFer, if you are willing to make the extensive changes and keep the regimens necessary for post-transplant life, I say go for it. It is a last resort and should only be considered as a last resort. However, for those without other options it's a very good last resort indeed! I have 2 problems with heart transplant:

  1. It's a crap shoot. Now, if you're dying, that doesn't matter. However, if you're not in desperate shape, it might matter a great deal to you. Unlike kidney and liver transplants where there is a lot of time to "match" donor organs with recipients; with hearts there is 4 hours start to finish, so no matching is done beyond the barest basics. Therefore, you may get a really good match, a really crummy match or somewhere in between. If it's a really crummy match, you're in for a very hard time; and will probably die fairly soon and not well. Many recipients are not fully aware of this before getting their donor heart, which leads me to number 2,
  2. The transplant medical community does a very poor job of fully explaining to potential recipients the full range of what could happen after transplant surgery. Now, before I get scourged, some doctors and coordinators do a very good job explaining this to patients. However, the majority treat heart transplant as a holy goal which must not be criticized, and which must not have doubts cast on it by scaring peole who are goig to have one.

Now, with my little rant done <g> I believe that as long as it is offered as an option, it's a good option for desperately ill people. No one else should consider it. If I must be transplanted or die, I have absolutely no idea what I will choose, I really don't. I will not completely rule out any option for my own treatment until I get to that bump in the road, face it, and study it under circumstances at that time. I wish I could give you a yes or no, but I just don't know. Jon.


Emil, November 25, 2002 - Hi, Has anyone had either the myosplint or Acorn? Has your EF improved? How much? I'm concerned that if I have either procedure, it will not allow me the quality of life I need, yet be enough to prevent me from a future transplant. spaeth@ruralnet2.com


Lori K, November 25, 2002 - Hi Jon and CHFers, I need some help from those of you more experienced than I am with a situation. I have had IDCM for one year. For a few years I complained of SOB and kept getting put on more asthma medicine, which I had for 5 years.
     As it turned out, it was DCM. No doc seems to really know what caused it. Recently I started getting frequent respiratory infections every few weeks and coughing up loads of clear phlegm. I also have lost 15 pounds in 2 years. I am only 110 pounds. I have been tested for all kinds of cancers, endocrine problems, and you name it, with no real answers. This week I went to the local transplant center to see the head of the department just to get his opinion on all this.
     My prior tests a year ago showed me at a Vo2max of 24, EF of 40%, BNP of 11, and a clean cath. I am a class one patient. I have had more belly swelling and episodes of SOB and chest pain with the infections. So this is where I need help.
     This CHF doc wants the following tests done: CPX, echo, MUGA, right heart cath (yikes), 24 hour holter, lung CT scan, norepinephrine levels, and a bunch more blood work. Is it me or is this excessive? He says the only way to see if I have fluid in my lungs (in the lymphatics) is to do the right-heart cath. He does not hear fluid or see any on my chest films. I am currently taking Altace and Zebeta. I want to know what my current heart function is, but wow! Does this sound right? Do I get this work up because I dared to step into a transplant center?
     Oh, this doc will not let me get any of the tests done at a hospital closer to me, even the non-cardiac ones. Has anyone had all these tests done? Thanks for help, Lori. thegoof86d@aol.com


Jon's November 25 reply to Lori K's November 25, 2002 - Hi Lori, Is this a new CHF doc for you? Is he the transplant cardiologist? I am confused about what the tests are meant to accomplish. Did you ask to have your heart function reevaluated? Was this all suggested to track down a cause of your respiratory infections? Are the tests baselines because you are a new patient to this doc? Do you have arrhythmias or suspected pulmonary hypertension? I don't quite follow.
     You explained his reason for the right-heart cath. With a normal BNP, why test epinepherine (a very expensive test)? With a MUGA, why an echo? With an echo, why a MUGA? What specific reasons for each test did he give to you? He did give a reason for each one, right?
     Also, you say you now have "more" belly swelling and SOB but you are a class one CHFer. Did you have these symptoms from CHF previous to the respiratory infections? How often? I don't know about Zebeta but Coreg (same drug class) was associated with a significant number of upper respiratory infections during trials (18% of particpants). See www.chfpatients.com/text/coreg1.txt. Has this been considered? Just a thought at the last minute, that. ;-) Jon.


Darlene T, November 25, 2002 - Hi there, My name is Darlene and I am a nurse. I am also attending university and I have an assignment to do on CHF. Myself and a group of 4 other nurses are formulating an outpatient CHF management program to increase quality of life and prevent unnecessary episodes of acute congestive heart failure. Part of the assignment requires interviewing 3 people with CHF. Unfortunately I have very limited time and would need the questions answered within 24 hours. If anyone can help me out with this, I would appreciate it. The questions are:

  1. Identify barriers to appropriate care of CHF.
  2. What are your frustrations regarding the disease process and the available care?
  3. Do you have any learning needs that are not being met?
  4. Do you have any recommendations to health care providers?
  5. If you could change one process or system, what would it be?
  6. Is there much of a financial burden to manage CHF effectively? (are the meds expensive, etc...?)

Please reply by e-mail to DrlTayl@aol.com. Please type "CHF" in the subject line. Thank you. I appreciate the time and effort. I hope that your feedback will help CHF patients in the Detroit area. In Christ, Darlene Taylor. DrlTayl@aol.com


Sue, November 26, 2002 - Hi, Has anyone heard of the injection of myocyte cells taken from the thigh muscles and injected directly into the myocardium, where they proliferate and improve muscle contraction? There are clinical studies being done in Europe and in the USA. I have DCM with an EF of 25%, and have been one of those patients who is not improving. I just wondered if anyone has heard pros or cons regarding this. suekgpc@hotmail.com


Jon's November 26 reply to Sue's November 26, 2002 - Hi Sue, This is a therapy that has been in development for years. Unfortunately, the media has done its usual lousy job accurately reporting it. Arrggghhhh. There are articles about it here, here and here (let them load). I have not posted new presentations from the last big medical conference because they gave no new information. The media has downplayed these two points:
     First, CABG (bypass surgery) was also done on most of these patients at the same time. Their improvement is right in line with the improvement that would be expected from CABG alone, renewing blood flow to the heart. There is currently zero information showing that the skeletal muscle "plugs" are actually helping these patients. If I see signs of such a finding, be assured I will have it on my site pronto. ;-)
     Second, a European trial has been stopped early because this same therapy caused tachycardia (fast heart rate) in the patients receiving it. So this may include dangers not being "advertised" to date. If I get more information on this, I will also place it on site.
     Until I get some actually new information though, I figure to wait. I hope the articles linked in this post help some. Feel free to e-mail me any new information you find. I need all the help I can get and some of you guys are whiz-bangs at finding information! :-) Jon.


Dee L's November 26 reply to Sue's November 26, 2002 - Hi, The following is an article from the OSU (Ohio State University) Health Connection Magazine of Summer, 2002. It may be of interest.
     To extend the lives of people with serious heart disorders, and to decrease the need for heart transplants, Ohio State University Heart Center surgeons have transplanted patients' own muscle cells into an ailing heart to stimulate growth of healthy cells is an emerging field of research and medicine's best hope for restoring the quality of life for people with irreversible heart damage, according to Robert Michler, MD, chief of cardiothoracic surgery and thoracic transplantation at OSU Medical Center. Approximately six patients received the experimental therapy at OSU. It will take several months of follow-up before researchers can determine if the newly transplanted cells strengthened the heart however. Skeletal muscle cells, unlike heart cells, can reproduce rapidly in lab conditions, making them ideal for this type of transplant. Skeletal muscle cells also have the ability to repair themselves, and becasue we're using the patient's own cells, we eliminate the risk of rejection, says Michler.
     Dee L. gardengirl33@juno.com


Darlene T, November 26, 2002 - Hi, Thanks to all who participated in helping me complete my interviews for school. I received enough responses and the information was terrific. I really didn't think I had enough time but you really came through for me. It certainly was an educational experience for me and I did gain a little insight into some of the frustrations and barriers that CHF sufferers experience. I will provide feedback to all who participated once the outpatient treatment program is complete. Thanks again for your time and energy. Yours in Christ, Darlene Taylor. DrlTayl@aol.com


Lori K's November 26 reply to Jon's November 26, 2002 - Hi Jon, Thanks for your reply. The CHF doc I saw is a transplant doc. It also is the first time I am seeing him. I went to him on the recommendation of my pulmonary (lung) doc due to a loud P2 and some increasing SOB and fatigue. My pulmonary doc is friends with this CHF doc. The only tests this CHF doc talked to me about were the MUGA and the right heart cath.
     I came out of the visit with an order for a whole slew of tests. I was irritated by this and voiced it to the nurse who said he usually discusses each test with the patients. Well, he did not. I saw the order form and it is called a mini-transplant lab work-up. I feel I am being put through the whole 9 yards despite its real necessity.
     I wondered if yearly most CHF patients get these tests. He did say I would need these tests yearly. I put in a call to my pulmonary doc to get his take on all this since he did refer me. He is very conservative with testing and I think he will actually feel bad and call him directly and ask why all these tests. My regular cardilogist ran a BNP on me recently because of my symptoms and it was 14. I talked to him today and he doesn't get the work-up.
     I realize this is all my decision ultimately. So far it seems he is an all or nothing doc, with no flexibility. Anyhow, let me know what you think out there. My asthma is mild. In the community, my other docs seem reluctant to increase my beta-blocker due to my asthma. No one wants to switch me to Coreg. I presented this info to the CHF doc, hence the CPX I suppose. I have a LBBB. He thought the MUGA was superior to an echo in LBBB, so I was shocked to see the echo as one of the tests listed. I could understand doing some of these tests if needed, if my heart looked bad on cath or MUGA, but up front? Feedback appreciated. Lori K. thegoof86d@aol.com


Myrtle C, November 26, 2002 - Hi, I am tired of feeling tired and miserable. A change of life style has not helped me with my problems from CHF. I can't tolerate ACE or ARB meds, and am on only Coreg and a diuretic. I become so fatigued when I try to lift something a bit heavy or raise my arms above my head to do something. Plus the fatigue from walking just to shop causes my mind to get numb and I make bad decisions. Just ranting. ;-) Myrtle. omie@axs4u.net
 
Jon's note: Have you tried digoxin to make you feel better?


Clara D's November 27 reply to Myrtle C's November 26, 2002 - Hi Myrtle, I'm sorry you're feeling so miserable. I was also experiencing a lot of fatigue when I raised my arms above my head. It started after I began taking an ACE inhibitor (enalapril) and I was especially aware of it last Christmas when I was trying to decorate the top of our tree. I would have to stop and rest repeatedly.
     Since that symptom disappeared after I discontinued the ACE inhibitor, I blamed it on the drug. However, when I discontinued the ACE inhibitor I started using CoQ10 so maybe it should get the credit. Who knows? I've felt so good since starting CoQ10 that I have no intention of stopping it to find out if the symptom returns!
     I would suggest you try a lot of positive thinking since that helps me, but you're usually such an upbeat person that I'm sure you're already doing that. All the best, Clara. ncdossetts@aol.com


Jaci B's November 27 reply to Sue's November 26, 2002 - Hi, I have been watching that also, as I am hoping it will save my hubby. I do know that the Arizona Heart Institute is one place where it is being done. Let us know what you learn please. This is hopefully promising news, Jaci. onthegreen@owt.com


Mary, November 27, 2002 - Hi, I highly recommend anyone needing a really thorough heart test to have the Cardiac Pet Scan. They thought my husband's heart condition was much worse than it was until he had this test. I know most insurances do not cover this test unless it is recommended by your cardiologist or CHF doctor. My husband had many heart tests and by far this was the most thorough one. mabercrom@aol.com


Sheryl C's November 27 reply to Myrtle C's November 26, 2002 - Hi Myrtle, How long have you been doing your life style changes? Weeks, months? Usually when we talk about improving here, it is a matter of years. Also, when we say we are better, that means we don't feel washed out 7 days a week, just 4 or 5. :-) If I have 2 good days in a row, I start thinking, "I'm cured!" <g> Has your potassium been checked lately? Why can't you take the ACE inhibitor or ARB meds? Sheryl. cvprehab@hotmail.com


Scott Brown's November 27 reply to Jon's November 25, 2002 - Hi Jon, I will say that my experience with heart transplant has been very good. As you know, I live in Ontario, Canada, so the issues could be a little different. There is a severe shortage of organ donars. The first struggle is getting on the waiting list. If you are fortunate enough to make the list, then you carry a pager. In Canada, you could go over a year and never get a call. If you are in ICU or regular hospitalization, this bumps up your priority. Often times, they will use an artificial heart for several weeks to keep you alive until you get a real heart.
     While you are on a transplant list, you are expected to attend classes on different aspects of transplant. There are four 2 1/2 hour classes in total. The doctors and nurses are very thorough. They want to make sure you know all of the facts. With our medical system, transplants are 100% covered by the province. Transplant drugs are covered by private insurers (if you have one) or the province if you do not.
     I always feel badly for Americans with financial hardships due to their CHF. CHF patients are not getting rich in Canada, but at least they do not need to worry about paying medical expenses (if they do not have a private insurer). Thanks, Scott B. kitchenerguy@hotmail.com


Sue, November 27, 2002 - Hi, I was just diagnosed in October with CHF by my family doctor. She has done a lot of tests like chest x-ray, echo, CT scan, blood work, and cholesterol screening. I am on Lasix and my edema has gone down considerably. I only eat 1 gram sodium daily and less than 2 liters of fluid. I have lost 12 pounds of fluid. I don't have the shortness of breath I had when walking or climbing stairs. My blood pressure was 155 over 95. The ACE inhibitor Altace made me too dizzy but I take an ARB now, valsartan.
     I am so tired after 4 to 5 hours at work as a secretary. My doc monitors my potassium levels. I am supposed to wait 30 days to start an exercise program. I see my doc again on December 4. Should I have her refer me to a cardiologist? Does anyone know of a good CHF specialist in Kentucky? Thanks. SealeSusieQ@cs.com.


Joseph P, November 27, 2002 - Hi, The EP doc is going to put me on Tikosyn for arrhythmia. He said I will have to be admitted to the hospital for 3 days when they start it. Does anyone have first hand knowledge about this drug? It can cause cardiac arrest, put you into stroke or a lot of other things that are not so good if there is a conflict with your body. joeandol@shawneelink.net


Vicki S, November 27, 2002 - Hi, I recently contacted Jon and he suggested I post an inquiry here. I do not have a CHF diagnosis, but I was very recently diagnosed with systemic scleroderma. It went undetected (by the docs anyway) and ravaged my body for 17 torturous years. I have esophageal, lung, kidney, intestinal and I suspect, heart involvement. I had orthostatic hypotension until recently. My blood pressure is now in the mid 170s over 107 to 110 with a pulse of 129. I found this out when I went to a routine follow-up for scleroderma and the doc made me go to the ER from his office due to my high blood pressure and heart rate. I resisted going to the ER as my husband and I had planned to leave from the appointment to go to a bed and breakfast for our anniversary. The doc wrote an "against medical advice" statement and I did get the picture.
     I spent 7-1/2 hours at the hospital. I had an irregular heartbeat and I have an unusual P axis with possible ectopic atrial rhythm. I just looked through what few medical records I have and all of my ECGs were abnormal. One states sinus tachycardia, but no one brought the ECGs to my attention. I also realize that an abnormal ECG can be insignificant. Back to my hospital story, I was connected to a heart monitor for quite some time and given an IV because I was dehydrated. I was discharged and my diagnosis was fluid depletion and high blood pressure. I made a return trip to the ER a few days later with high BP, heart rate, bloating, stomach pain, and lightheadedness. I got the same discharge diagnosis: high BP and fluid depletion.
     I have 6 appointments coming up in various specialty departments of the hospital and none of them pertain to my high BP or heart. I think the high BP/heart issue got lost in the shuffle because the hospital is large and I have so many other health problems. I "think" scleroderma can cause restrictive cardiomyopathy, but am unable to see a specialist without a referral.
     Incredibly, my PCP recommended I see a psychiatrist 2 weeks prior to my scleroderma diagnosis. I had "inconsistencies" but nothing concrete enough for him to make a diagnosis. I now wonder if my tachycardia led him to believe that all of my symptoms were attributed to anxiety. I'm obviously not comfortable asking him for a referral, and I also don't think he's received copies of my diagnosis yet. I am currently unable to drive or even walk around in my own house most days.
     I've been through a lot for a 45 year old but I can't say that I'm angry or bitter about it. I'm also not going to just lay down and die for anyone, especially a doctor. I checked this site for a doctor in Iowa but only found one and it's too far away. I'm looking for a doctor in the Cedar Rapids/Iowa City area. Can anyone make a recommendation? Thanks much in advance, Vicki. takingchanses@southslope.net


Jaci B, November 27, 2002 - Hi, I am still waiting on a reply from Guidant. I e-mailed them a question asking where locally they have their computer to interrogate the ICD. It seems that none of the 3 major hospitals I contacted have on. Guidant did reply very promptly a few times back in May but now they ignore me. Jaci. onthegreen@owt.com


Natalie K, November 27, 2002 - Hi, I just received my first order from www.heluvagood.com and it's pretty good cheese to have only 8 to 10 mg of sodium per ounce. Boy, are those folks fast! mcnat45@yahoo.com


Richard M's November 27 reply to Sue's November 26, 2002 - Hi Sue, There are also adult stem cell trials. I have been following this for over a year. The company who is the leader in this is called Bioheart. They are at the end of phase 2 trials and are saying that if this works, they might have a product on the shelf by 2006. However, please do not get your hopes up too high; there is a lot to find out yet and in the end, it may not work. Malczewski@attbi.com


Amelia, November 27, 2002 - Hi everyone, Whenever I feel down, I get on this site and after reading the posts I feel "normal" in my complaints and feelings. I feel very confident with my CHF and know that I am getting the best of care, but what I don't understand with having CHF is the level of cardiomyopathy for symptoms. My doctor says that some of my fatigue seems out of proportion to the degree of heart disease, but on the other hand he says it may all be related and it is just impossible to tell.
     My EF was 45% last April and last month after an echo was 35%. I am on 20mg Lasix, 20mg Vasotec, 25mg Toprol-XL, and Coumadin (warfarin). In the meantime, he is doing everything he can to have me feeling better. He has me coming to the office every month now and my Coumadin check is every week. So much for being 7quot;washed out." Anyway, this is a time to reflect on our blessings. I wish the very best and a happy Thanksgiving to all. amelias@erols.com
 
Jon's note: I know how you feel, Amelia. My CHF doc says that Jon is improving more slowly than his heart. <g>


Susie O, November 27, 2002 - Hi Jon and everyone on site, I hope you have a safe and happy turkey day with all the trimmings. texlady1@hotmail.com


Sandy, November 28, 2002 - Hi, I just wanted to say hi to Jon and all the other folks on this site. Happy Thanksgiving and a blessed holiday season. David is doing better after his second bout with CHF. Best wishes to all, Sandy. ofatts@aol.com


Myrtle C's November 28 reply to Amelia's November 27, 2002 - Hi Amelia, My doctor also tells me that my fatigue is out of proportion to my CHF, but that is what I have been hearing ever since I began with cardiomyopathy after a heart attack. Is it our doctors or is it us? I have had so many cardiologists (8 in 12 years) blame my fatigue on depression, which I do have. There is a distinct difference between the two types of fatigue. My psychiatrist even sent a note to my cardiologist and he had the nerve to tell him I was in mourning for my heart problem. Yeech! Hang in there and we both will do okay! Bunches of hugs, Myrtle. omie@axs4u.net


Myrtle C, November 28, 2002 - Hi to all, Hope is faith holding out its hands in the dark - George Iles. May God keep you each in the palm of His hand. omie@axs4u.net


Margaret D's November 28 reply to Sheryl's November 27, 2002 - Hey Sheryl, You are so right about feeling good two days in a row and hoping we're cured. I got a great laugh out of that! My EP says that "that washed out" feeling goes away. I call that gross understatement! To me, the correct term is "life-sucking feeling." mdavis10@tampabay.rr.com


Margaret D, November 28, 2002 - Hi, To those on amiodarone (Cordarone), how long were you in the hospital when you were first placed on the drug? I recently read about someone who was in Club Med for 6 days for that reason, while I was only in an extra day and a half. Part of that time was spent off the monitor because some nurse took it off and I thought I was going home so I didn't question it! Talk about liability! mdavis10@tampabay.rr.com


Eve's November 28 reply to Vicki S' November 27, 2002 - Hi Vicki, Get hold of the Scleroderma Foundation at www.scleroderma.org. I know what you're going through. I watched my ex-husband go through it for about 20 years. He also had to deal with blindness caused by the disease, the only documented case, I believe. Good luck and happy Thanksgiving, Eve. eguillot@vonderbarr.com


Amelia's November 29 reply to Myrtle C's November 28, 2002 - Hi Jon and Myrtle, It sure makes me feel that my fatigue is real and not in my head when I know others are going through the same thing. I know now that it is real. I had Thanksgiving at my daughter and son's in law, with about 30 family and friends. My daughter warned her nieces and others that I was not allowed in the kitchen so all I did was visit my homebound mom, then went to my daughter and just enjoyed the blessings that surrounded me: lots of kids, food, fun and the game, but that ended with my having chest pain and being extremely tired so I went home and spent the rest of the evening on the sofa. I got up at 11:30 PM to send this post and will now say goodnight with best to all. amelias@erols.com


Sheryl, November 29, 2002 - Hi, Do any of you with diabetes have neuropathy being treated with the drug Neurontin? After reading the drug insert, which gives one of the frequent adverse reactions as hypertension, I am questioning if it is okay to take. I am blessed with a wonderful imagination so see this drug, my ACE inhibitor and my beta-blocker (little pills with arms and legs) pulling my heart back and forth while yelling, "Higher - No - lower." "Higher you fool!" "Lower, lower, lower." Well, you get the picture. I have talked to 2 of the doctor's office nurses without a return call.
     Meanwhile, I am wearing wrist braces and having carpal tunnel symptoms which are getting worse each night. As I understand it, the drug is for neuropathy pain but I have no pain. I'm just losing control of my thumbs and losing my grip. This has happened fast. My thumbs are a little sore this morning from the cramping night before last. The joints just tend to get stuck in a straight position or cramp in a bend. This could ruin my days of hitch-hiking!
     Any info on this drug and diabetic neuropathy would greatly be appreciated. Yes, I will try again to reach the doc, who I used to trust. Thanks, Sheryl. cvprehab@hotmail.com
 
Jon's note: Are you in the care of a neurologist?


Jacky's November 29 reply to Margaret D's November 28, 2002 - Hi, I started with Solatol and was in the hospital 2 days. When that was ineffective and I was put on amiodarone I was not in hospital again. For me it has been a miracle drug! Jackymwb@aol.com


Rebecca C, November 29, 2002 - Dear All, I discovered this site thanks to Leo Kuijpers in Holland, who recommended it. I have read the recent posts and I am grateful to have a place to come and read, learn, and post my questions. I am 48, recently diagnosed with dilated cardiomyopathy, LBBB, low ejection fraction (36%) and high blood pressure (untreated, it was 180/110). I am now on Coreg and Atacand. I take a lot of CoEnzyme Q10.
     All this is unreal to me. I am a personal trainer, I am in shape or so I thought, I have a good HDL/LDL cholesterol ratio, this is not supposed to happen! The cynical side of me wants to say, "Go eat ice cream! Forget exercise! It doesn't make any difference!" Part of me reads the posts and and reacts with denial: "I am not one of these people with CHF!"
     But alas I am. As I write this, my heart is pounding as at times it is want to do. Does anyone else's fingers and hands turn blue on occassion? I do fight constant tiredness. Sometimes I am depressed. Yesterday I had the good fortune to speak with Dr Mehmet OZ after Thanksgiving service. He was kind and gave me lots of hope for improvement.
     So what has this disease given me? Well, time to reflect; time to purge myself of any arrogance of "being in shape"; time to reflect about what is really important in life: my husband, my children, my friends. Thank you Jon, for establishing this posting site, Rebecca C. Rebcooper@aol.com


Doreen, November 30, 2002 - Hi, I have just recently found Jon's Place and I can't begin to tell you how much better I have felt just reading your messages. I have been diagnosed with CM since 1997. I am one of 4 children and the last one diagnosed with CM. I would like to hear from someone who also has a family history like mine.
     I was diagnosed when I was 48 and at that time I had no symptoms. I had an echo because my youngest brother was diagnosed with CM after collapsing at work. My oldest brother had a heart transplant 5 years ago after dealing with CM for about 10 years. My second oldest brother was diagnosed after his death at the age of 30, about 25 years ago. That was the first time we had heard of CM. Obviously the gene is in our family somewhere.
     I am on Coreg, Vasotec, and aspirin. Fatigue is my biggest problem right now. Does anyone have a family history like mine? Doreen_Mawson@ATT.NET


Natalie K, November 30, 2002 - Hi Jon, I have been doing my Amazon shopping via http://www.free2give.co.uk/shopping.php?charity=c40, which donates 2.5% of my purchase profit to the Cardiomyopathy Association in the UK. That's okay but are there similar arrangements in the USA? mcnat45@yahoo.com


Jon's November 30 reply to Natalie K's November 30, 2002 - Hi Natalie, I don't know. I always pick my charity of choice and just donate directly so I never checked into it. It's easy to track for taxes that way if you want to do so. Jon.


Jon, November 30, 2002 - Hi everyone, This is regarding posts like the one after this one. I usually post such requests but Sabrina did not e-mail me first and ask, nor did she present to me any credentials, so I have no idea if she is on the level or not, and I have no way to check on her because of the generic Yahoo address. Send personal information to such people at your own risk. I am not responsible for what happens if you do send such information.
     If a poster says, "I talked to Jon and he okayed me asking here," that's a somewhat different story. Even though I am still not responsible for what happens to your info, at least I have talked to that person and determined that they are probably legitimate. Jon.


Sabrina, November 30, 2002 - Hi, I am compiling stories about heart failure and transplantation for a local heart transplant program, to be printed and made available for their patients. I would very much appreciate hearing from anyone (by e-mail) with CHF/transplant stories they would be willing to share for this purpose. The stories may be about how you found out you were sick, a particular test that sticks in your mind, how you cope with being in the hospital or being sick at home, anything you think would be valuable to someone who has just been diagnosed. Please e-mail me at ignatoochstagnasty@yahoo.com


Margaret D, November 30, 2002 - Hi again everyone, I know that many of us with cardiomyopathy have trouble sleeping. Every night I wake up almost exactly half an hour after I get to sleep, then an hour, and sometimes almost every hour after that. It's like clockwork it's so regular. It's creepy! It's not because I have to go to the bathroom or because I'm short of breath and I get right back to sleep. I don't think it's due to arrhythmias either.
     Before diagnosis I would only have trouble getting to sleep due to restless leg syndrome, and then only awoke to go to the bathroom once. Does anyone have any ideas? I take nothing for sleep or anxiety, don't need it. By the way Jon, maybe we should create a separate category for sleep problems in your list of topics for discussion?! mdavis10@tampabay.rr.com


Dorothy Powell, November 30, 2002 - Hello all, I wanted to share my CHF experience. I was initially diagnosed with asthma. Although I had never had it, I didn't argue because my 18 year son has had it most of his life. When I woke up with ankles the size of elephant knees, I knew it was not asthma. I was diagnosed with CHF in April of 2001. When the cardiologist came to tell me the diagnosis, he said, "You have CHF with an ejection fraction of 24. You are the perfect candidate for a heart transplant." He got my attention!
     During my second or third appointment he told me he could get me an appointment in Houston the next morning. I assured him a heart transplant was at the absolute bottom of my list of possibilities as I felt fine and could exercise for 45 minutes without being short of breath. The interesting thing about that doc was that although he kept telling me I needed a heart transplant, he never made any written comments to that effect. I had begun to wonder if he got a kickback for referring patients to Houston. I changed cardiologists at that point.
     The new cardiologist said that if she sent me to Houston, they would call her and ask why. My point is: pay attention to your body. I think the fact that I had exercised for years probably contributed to my lack of symptoms despite my low ejection fraction. I have found that I do occasionally have to take afternoon naps and if I have a hectic day, I have to take a long nap the next day. I know how very fortunate I am and I'll let you all know if things change. Best wishes for good days. DPowell806@aol.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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