The paperwork never ends The Archives
October 1-15, 2005 Archive Index

Scott B's 10-1 reply to Karen S's 9-28     experience working full-time
Ann M's 10-1 reply to Karen S's 9-28     experience working full-time
Tom W's 10-1 reply to James' 9-26     runny nose and congestion experience
Roger G's 10-1 reply to James' 9-26     runny nose and congestion experience
Lowell P 10-1     do you think my heart will improve any more?
Jon's 10-1 reply to Lowell P's 10-1     improving your heart function
Brandy L 10-1     forgot to take meds, am having problems now
Shane R 10-1     am I overreacting to Coumadin approach?
Jon 10-1     site statistics, donations
Monika V 10-2     questions about colds with CHF, prognosis
Peter S' 10-3 reply to Jon's 10-1     donations, guidelines and more
Jon's 10-3 reply to Peter S' 10-3     guidelines booboo, donations
Tom W's 10-3 reply to Jon's 10-1     nasal spray
Jon's 10-3 reply to Tom W's 10-3     nasal spray
Rosie L 10-3     what is my dad's real situation here?
Mary Anne 10-4     update after ICD/pacer implant
Marty C 10-4     should I press for CRT pacing?
Ranko M 10-6     should my mom have this surgery?
Linda S 10-6     is any of this serious?
Brandy L 10-6     echo questions
Jon's 10-6 reply to Brandy L's 10-6     echos and valves & to Linda S
Loren 10-6     why me?
Tony M 10-6     questions about effects from Vioxx
Jon 10-8     scheduling is tough lately
Tom S' 10-8 reply to Loren's 10-6     why me?
Lowell P 10-8     Coreg dosing mistake
Jon's 10-8 reply to Lowell P's 10-8     Coreg dosing mistake
Betty L 10-8     problems using Visa to donate
Peter S 10-8     folic acid, B vitamins, homocysteine
Giorg 10-8     uric acid, arginine questions
Evelyn J 10-8     I need some help
Roger G 10-9     ICDs and cosmic rays
Roger G 10-9     ICDs that transmit info to hospital
Tom S' 10-9 reply to Jon's 10-8     that's human nature alright
Pat Y's 10-9 reply to Evelyn J's 10-8     finding info, this web site
Mary Anne M 10-9     sweats & overactive bowels - anyone else?
Mary Anne M's 10-9 reply to James 9-26     when I am getting a cold
Sandy N's 10-9 reply to Evelyn J's 10-8     finding info, this web site
Jacky B's 10-9 reply to Jon's 10-8     hang in there
Nancy S' 10-9 reply to Karen S' 9-28     working with heart failure
Tom S' 10-9 reply to Betty L's 10-8     getting Visa credit card to work
Tom S 10-9     drug dosing errors
Jon 10-11     testosterone level
Karen S' 10-11 reply to Nancy S' 10-9     thanks to all
Sharon L's 10-11 reply to Peter S' 10-8     what is a high folic acid dose? donations
Mary Anne M's 10-11 reply to Tom S' 10-9     question everything for sure
Tammy L 10-11     husband wants to go back to work
Jon's 10-11 reply to Tammy L's 10-11     going back to work, questions
Cheryl C's 10-11 reply to Betty L's 10-8     donating with credit card, living with CHF
Mary Ann H 10-11     Coreg dose questions
Jon's 10-11 reply to Mary Ann H's 10-11     Coreg dose, heart rate
Jon 10-12     personal update
Tony M 10-12     bad neurontin experience
Jim M's 10-12 reply to Sharon's 10-11     folic acid experience
Beckie 10-12     Vo2max test questions, Coreg experience
Betty L's 10-12 reply to Jon's 10-11     testosterone levels

Scott B's October 1 reply to Karen S's September 28, 2005 - Hi Karen, I am 36 and have been diagnosed with CHF for 5 years now. I have been working full-time the whole time. Plenty of CHFers can work, and plenty cannot. It runs the whole spectrum, there are so many variables. Hopefully, your pacer will assist with your recovery so you feel up to working.
     I was really sick when I was diagnosed. My EF is still less than 30% but at least that has been fairly consistent the past 5 years. My heart appears to continue to enlarge (which is not positive).
     So, it is too soon to say. I can't say I am 100% compared to 10 years ago but with meds and diet restrictions, I function well. Good luck. Scott Brown.

Ann M's October 1 reply to Karen S's September 28, 2005 - Hi Karen, I got CHF in April and thought, "Okay, I can't work" - wrong. My EF is under 30% and I've got a defibrillator for V-tach, have had 2 heart attacks and a stroke. There have been days when I have not wanted to work, when CHF was especially bad that day or week but then other days I'm fine. I went to the Social Security office to get the paperwork to apply but they wouldn't give it to me since I was still working full time. I know that if I qualify for SSA, I'll get half my salary and I can't live on that so until I drop or am told offically not to work by my heart specialist, I'll come to work and take time off when I need it. I hope this helps.
Jon's note: Just to let everyone know, SSA has no right to withhold application forms no matter if you're working or not.

Tom W's October 1 reply to James' September 26, 2005 - Good Morning James, I hope you are over your runny nose! When I get one I use a prescription product called Ipratropium Bromide Nasal Solution 0.06% (nasal spray). It contains the before-listed product, plus benzalkonium chloride, edetate disodium and sodium chloride. I think the brand name is Atrovent. You can see, it does contain salt but you are not drinking it and I have personally never had to use it more than a couple of days before it solved the problem.
Jon's note: I don't know the amounts involved and if it works for you without problems, that's cool. Just be aware that salt is absorbed into your system very effectively through nasal linings.

Roger G's October 1 reply to James' September 26, 2005 - Hi James, I take Equate brand Allergy Relief when I have a cold. It contains Loratadine 10mg, and is also known as Claritin. Equate is a generic Wal-Mart. brand. Please note that Claritin is different from Claritin-D. Claritin-D contains pseudoephedrine, a no-no.

Lowell P, October 1, 2005 - Hi Jon, I hope first of all that you are feeling better and have a handle on what's going on in your body. As usual, I keep you in my prayers. I just found out that my recent EF is now 35% from 28%. Other than that I don't know more until I see the doc. I called for the EF number. Jon, I had an EF of 45% until the MI during bypass a year ago. It has risen slowly since then and I don't really expect much improvement anymore. My heart apparently is not enlarged, it just isn't a good pump any more. I have reasonable energy levels except for being very tired just recently.
     What I'm wondering Jon, is this. Can I expect any improvement or will it most likely stay the same or get worse, the CHF, I mean. Is there a general prognosis for this type of problem? Maybe this is an unreasonable question but I'm wondering how many people with low EFs like mine live very long? Lowell.

Jon's October 1 reply to Lowell P's October 1, 2005 - Hi Lowell, Usually I say that there is no way to know and that's true. However, I know more about your situation than I usually know when asked a question like this, so I'm going to give some information. Still, the bottom line is that I can't be sure what I am saying will actually happen.
     I really think you need to be tested for a BiV pacer. You seem to be a candidate, and a new EKG would be a good first step in finding out. Your atrial pressures could be a substantial part of your heart's refusal to function better and any therapy that could improve those pressures would give you a shot at further EF improvement in my opinion. Such therapy could also improve your neurohormonal levels (as evidenced by your persistently high BNP) and that could contribute to further EF improvement as well.
     You may have "hibernating" heart muscle cells from the heart attack that are not functioning but are not dead either. Correcting the heart pressures could enable some such cells to slowly regain function. Unfortunately, the only way to be sure is a PET scan and those are very expensive and not usually covered by health insurance.
     I think you have a shot at further EF improvement and also at overall heart health improvement. Pursue further testing to see if a CRT pacemaker is in your future. I strongly suggest a second opinion from an experienced heart failure specialist anytime a device implant is considered, whether the first doctor says yes or no. If a doctor says you do not qualify, insist on specifics about exactly why you don't qualify. A lot of doctors, including cardiologists, still don't understand cutting edge device therapy and patient selection.Jon.

Brandy L, October 1, 2005 - Hi everyone, It's been awhile since I've been around but that's because I've been doing magnificent! However, I was so busy and feeling so well that I forgot my medicine for about 3 or 4 days. I was feeling a few palpitations, which reminded me to take it. I've been back on my meds since Wednesday morning. They are Lisinopril and Toprol-XL. I seriously feel like I've been run over by a truck. My body is sooo darn tired, and while I can't "feel" my heart, I can. It's hard to explain. I get kind of winded when I stand up. I can still function but I'm feeling really rough. Could this be my body readjusting to medicine again? I have cardiomyopathy with an EF of 50 to 55%. I exercise 3 times a week, and overall am doing wonderful until this whole medicine skip.

Shane R, October 1, 2005 - Hi everyone, This isn't about CHF as such, but it is about Coumadin (warfarin) and I know a lot of us heart patients are on it. My grandmother is being put on Coumadin for non-heart related purposes and her doctors seem to be taking no concern about the diet, bruising, and all that fun stuff involved. I was just wanting to get some other opinions about their lack of concern approach. I've been on Coumadin from the start and even though I still don't care for it, I have developed a healthy respect for it and the responsibility of being on it. Am I just over-reacting or what?

Jon, October 1, 2005 - Hi everyone, Here's the donation situation this month. We had 96,114 visits in September, but only 23 people donated money. Last month was our worst-ever month and 20 people donated then. Compare these numbers to March of this year when 42 people donated. If you work and your company donates to charitable causes, please bring us to their attention if possible, at Also, ask your cardiologist to bring us to the attention of any potential donors in their circle.
     I believe I am the only person to spot an actual mistake in the new heart failure guidelines (Dr. Marc Silver verified it was a mistake - he is on the guidelines committee), which has now been passed to the editors at all those big medical journals for correction - their editors missed the mistake. We really do know what we're doing here folks, and lots of the information I pass on comes from you, our readers. Besides, it's you who keeps me on my toes! Thank you. Jon.

Monika V, October 2, 2005 - Hi, My mom was recently diagnosed with CHF, after her second heart attack. Her EF is 35%. I keep reading on the Internet about prognosis and it's somewhat discouraging. Four weeks after, she's caught a cold and I can't tell what's a heart failure symptom and what's a cold symptom. She started out with nose congestion. Now it's mostly heaviness in her chest and she is extremely weak. Can anyone talk to the prognosis (as in average length of life) or to the CHF versus cold symptoms?

Peter S' October 3 reply to Jon's October 1, 2005 - Regarding donations, my view is that everyone viewing your site on a regular basis should contribute 30 dollars per month, which is one dollar a day, less than the cost of three U.S. postage stamps. There are many who can afford more than this, even substantially more than this, but I would consider the above amount as a baseline target, unless one is really strapped. If it means giving up contributions to other causes, so be it. My next contribution is (really!) in the mail.
     On a more technical note, you mentioned spotting a mistake in the new AHA heart failure quidelines and that your medical friend Marc Silver, M.D. (who is on the Committee) agrees and is following up. I realize it is premature to discuss what you uncovered, but I can assure you that a number of us are very curious!
     Is Dr. Silver coming out with a new book anytime soon? It was his favorable mention of you in his last, and eminently readable, book on heart failure that first led me to your site.

Jon's October 3 reply to Peter S' October 3, 2005 - Hi Peter, One of the test results listed for qualifying a person for a particular therapy was way off. I corrected it for's guidelines as written at and on the other 2 pages where it appears, it was already listed correctly. The measurement was incorrectly listed as 0.12 ms instead of 0.12 s or 120 ms as QRS criteria for CRT pacemaker implant. I don't know when a new version of Marc's next book will appear. I keep 2 versions on hand myself.
     Notes about reader concerns on donating using the PayPal system: You don't have to have a Paypal account to use the electronic donation method. If you have a major credit card you can click the button, then on the page that comes up choose pay with credit card and no PayPal account ("Don't have a PayPal account?" is the exact wording over that option). Some people get a lot of spam claiming to be PayPal wanting to correct your account information or something. Please note that if you do have a PayPal account, any e-mails will be addressed to the exact name on your account - if addressed any other way (Dear PayPal customer or something similar) - it is not from PayPal and you can just junk it. If you donated to us via credit card, you will never receive an e-mail from PayPal wanting you to send them further information - any such message is spam and should be deleted immediately.
     I hate talking publicly about donations myself but our situation is so bad that my wife is looking at jobs requiring a move to other cities as means to increase her salary just so we can pay our bills. We have 3 loans on top of the mortgage taken to make repairs and keep a driveable vehicle. We don't take vacations, don't have cable television, our idea of eating out is to go to a steakhouse and share an appetizer, we haven't even gotten our turntable fixed so albums can be played, - this just so you know we aren't wasteful with money - I just don't make any. <g> ;-) Jon.

Tom W's October 3 reply to Jon's October 1, 2005 - Hi Jon, I use small amounts of 2 sprays per nostril, three or four times daily.

Jon's October 3 reply to Tom W's October 3, 2005 - Hi Tom, I know how important it is to be able to breathe through your nose. As if SOB from heart failure isn't bad enough, suffocating unless your mouth hangs open is the pits! Jon.

Rosie O, October 3, 2005 - Hello, I'm so glad that I found this site! A little history: My dad is 74 years young, has had heart disease for 18 years beginning with a quadruple bypass in 1988, has had one of his carotid arteries repaired in 1989, and has functioned fine since about 2 years ago when he was feeling really fatigued, and retaining fluid. Dad's cardiologist put in a pacemaker, then this past July put in a biventricular pacemaker with an ICd.
     He seemed to be doing great but then last week both legs puffed up. We took him to an emergency room and he was put in the hospital for 4 days to put him on Lasix and a Primacore drip. He came home last Wednesday tired (of course) but that man's spirit is enormous so he looks wonderful! Now I get a call from Mom and she said that his left leg is beginning to swell again. She is waiting to hear from the doctor as we speak. He's been restricted to one liter of fluid per day, which he follows to the ounce.
     I guess what I'm questioning is that 2 to 3 doctors (this last hospital stay) said that his heart is functioning at 15% and he is in kidney failure. What am I looking at here? I know, but I don't. Understand? Thank you. Rosie.

Mary Anne, October 4, 2005 - Hi all, It's been 12 days since my ICD implant. I requested and got a Biotronik Lumos unit ICD/pacer. This is monitored by a telemetry unit at your bedside. Each night, the ICD is scanned, a report is sent by phone to a satellite, then to a receiving station in Germany (Biotronik headquarters), then a report is sent to your cardiologist. The unit is monitored on a more consistent basis and alerts your doctor to any unusual activity with your heart.
     It doesn't constantly pace the heart. According to the rep, they have found constant pacing of CHF hearts can be detrimental. I feel well and am reassured to know that I have this backup in case I need it. The EP wanted to put in a Guidant unit but I refused and asked my cardiologist for his recommendation. He has had good success with the Biotronik units in his patients. I hope it works as well for me.

Marty C, October 4, 2005 - Hi Jon, My donation for October is on its way. I wish it could be more, but I've determined to focus on keeping it consistent each month, then adding as God blesses in the future. I encourage everyone to do it this way! "Many hands make light work." If 10% of the people who use this site each month sent just five dollars each month, imagine what that would do! Folks, don't think it has to be a zillion dollar grant to help keep the site going, just do what you can.
     My question today is about QRS interval. I've had LBBB for exactly 5 years and my EF has declined over the past 4 years consistently, losing about 5 points a year, now at 35%. My QRS interval averages 150, yet because I'm staying in class 1 to 2, they gave me a two-lead ICD last August instead of the three-lead biventricular pacer. It's only pacing me about 5 to 10% of the time, generally due to pulse below 60. My question is whether I should wait until I lose more ground on the EF and heart class to start lobbying for the 3-lead pacer. Please let me know what you think, and God bless you for your dedication and the gift this site is to all of us. Marty.
Jon's note: With a QRS that long and LBBB, I'd want another opinion. Yes, I'd push for serious consideration of one.

Ranko M, October 6, 2005 - Hello, My mother (65 years of age) was diagnosed with an aortic valve problem. A report said, "Stenosis Ostii Arteriori Sin p6=45" and "Insuficientia Valvulae Semilunaris Aortae." Her cardiologist recommended aortic valve repair/replacement based on echo examination and physical exam. She has no symptoms except that she easily gets tired. She also has high blood pressure, which is treated with an ACE inhibitor. What are her options? Should she go for operation, or leave it as is? She started taking supplements (Q10, Omega3). She also has arthritis. Regards, Ranko.
Jon's note: I can't give you any definite answers except to say that no one should ever have surgery without at least a second doctor's opinion.

Linda S, October 6, 2005 - Hello, I have had 5 yearly echos done. Every time I have them done, things seem to change as far as diagnosis and numbers. My measurements were as follows on the last echo: intreventricular septum 1.2 and 1.4, LV post wall 1.2 and 1.4, LV internal dimensions 4.6 and 3.0, LA diameter 4.0, aortic root diameter 2.6, aortic cusp separation 1.5, MV excursion rate 2.4, EF 56%. Impressions reported were: "Concentric hypertrophy left ventricle with evidence of diastolic dysfuntion, preserved left systolic function, right ventricle appears mildly hypertrophied, mitral regurgitation with left atrial enlargement, borderline aortic flows 1.9 mg/Hg.
     I am sometimes diagnosed with mild aortic stenosis, was 2.2 two years ago, now borderline. My MV excursion changes every time I have an echo done. How can I have diastolic dysfuntion since my blood pressure is always under 120/70, but I do have white coat syndrome and my blood pressure is high when the tech does my echo. I am a 64 year old female with a lifelong heart murmur. I also have mild carotid stenosis both sides. Does any of this sound serious? I am being monitored by my regular doctor and the only meds I take are foltx for a slightly elevated homocysteine level and 81 mg ecotrin per day. Thank you, Linda.

Brandy L, October 6, 2005 - Hi, Referring back to the post I made a few days ago, I'm still having symptoms and the doc decided to see me today and run a BNP, HnH and a Chem8 along with a 2D echo. I won't know anything until Friday likely. However, I got my daughter's echo report back today and I'm worried. Maybe someone can offer some insight since her cardiologist is not (I'm calling up there in the morning). Here's what her results said: Mitral Valve Prolapse with mild mitral regugitation, trivial tricuspid regurgitation and pulmonary insufficiency. She's just 9 years old. This isn't the beginning of something big, is it?

Jon's October 6 reply to Brandy L's October 6, 2005 - Hi Brandy, I don't know. One thing I cannot overstress is that anyone who gets a result on valve function that uses a description of mild, moderate, or severe needs to immediately talk to your doctor and get a number. Heart valve dysfunction is supposed to be graded on a scale of one to 4+. The words can mean anything because they do not have standard definitions in the medical community. However, numbers are much easier to interpret accurately so you know where you stand. Get the numbers.
     A note on echos here too - don't expect them to be perfectly consistent. Echos always have a significant range of error due to hardware, software, patient body composition, tech skill, and more.
     Finally, heart valve function can test trivial one day and moderate the next, then mild 2 weeks later. This is why "serial testing" is critical. That means having the same test done at regular intervals over time to establish an accurate trend and average readings. Things to consider.
     Linda S, high blood pressure is not a requirement for you to have diastolic dysfunction. You need to take a written list of questions to your cardiologist and have him answer them one by one. Take 2 copies and hand one to him when he enters the exam room. Jon.

Loren, October 6, 2005 - Hello, I am new to this, so please bear with me. I am on a whirlwind info search. I was recently introduced to my heart, the hard way. Last week, the day after my 37th birthday, I had a widow maker. I am a little lost as to what happened. I had no history of heart problems (then), I excercise (14 miles of mountain bike riding daily and weightlifting one to two times a week), I eat right, I did smoke and my doctor has told me that my bad cholesterol was in the excellent range and my good cholesterol was in the okay/low range. I am about 10 lbs overweight.
     I was never one to take medication by choice. I didn't even like taking an aspirin for a headache, but man, has that changed. I had angioplasty with a medicated stent inserted in my LAD, which was 100% blocked, and I am now on Plavix, aspirin, Toprol-XL, enalapril, Prevacid, niacin and due to a reaction to one of them, I am now on Benadryl and Medrol. My reaction didn't occur until I got out and on my own.
     This has all happened fast. I got out of the hospital after about 4 days and I am still not real clear what the heck just happened and (I hate to ask this), why me?

Tony M, October 6, 2005 - Hi, My visit with Dr. Bourge at the University of Alabama med school is at the end the month for my heart checkup. I will ask him about the school donations for your web site. He remembered you fondly last time I was there. In 2001 when I was found to have cardiomyopathy, my local doctor here in Montgomery had prescribed Vioxx for me. I found out a month later my ejection fraction was 22% and I closed a small but very labor intensive glass company. Three to 4 months later I developed diverticulitis that put me in the hospital several times over 6 months until they could do the colon resection.
     Has anyone heard of Vioxx causing these problems? Also, I took it for about a year a a half because a Vioxx rep gave me 12 bottles of it so I took it for about 14 months before it ran out. I then had a ejection fraction change from 22% to 50%. I sort of think the Vioxx caused the diverticulitis because the surgeon said he could not believe I had never been to the doctor before complaining about my lower intestines hurting. He said they were the worst he had taken out in years. I was 43 at the time. Also they say Vioxx causes heart attacks (how and why or what is the cause of the heart attack). Thanks, Tony M.

Jon, October 8, 2005 - Hi everyone, I am sorry for erratic posting. I had a doctor appointment Thursday, tests yesterday, and today I have an MRI at the hospital. At least we've found some things definitely wrong lately so we can start working on making it better! Jon.

Tom S' October 8 reply to Loren's October 6, 2005 - Hi Loren, There are often signs of impending problems before the big one arrives. Perhaps you were too stubborn to see them and didn't take the time to be "sick." I have known several physically fit doctors and dentists in my life who dropped dead while exercising or jogging, who thought they were in tiptop shape.
     The old "Why me?" question is always interesting to pose because I always ask "Why not me?" As long as you are part of the human species you are a target of anything mommy nature chooses to throw your way - just as much as the next person. To mentally separate yourself from the rest of humanity impunes an opinion of oneself that borders on narcisism. Welcome to the human race.
Jon's note: And here I thought this was just basic human nature, seen in each of us from time to time at the least.  ;-)

Lowell P, October 8, 2005 - Hi Jon, I have just discovered that I have been taking 25mg of Coreg only once a day rather than the prescribed amount of 25mg twice a day. I think this has been going on for about six months.I can't explain why I didn't catch this sooner. The label on the bottle says twice a day without question.
     Do you think this could account for the high BNP that I have? Second, do you think I could have damaged my heart or reduced the remodeling improvement by not taking the correct amount? I am going out of town and won't be able to see my doctor until I return on October 17th. I have an appointment with him on the 19th of October. In the meanwhile I don't want to change the dosage until I see the doc again.
     What do you think of the consequences of such a blunder? Lowell.

Jon's October 8 reply to Lowell P's October 8, 2005 - Hi Lowell, The main problem is that your blood level of carvedilol (Coreg) is spiking up and down every day. You really need to get to that twice a day dosing right away. I don't know how this will affect your BNP but it will affect your attempt to reverse remodel your heart's physical structure. Constant beta-blockade is best for that. Jon.

Betty L, October 8, 2005 - Hi Jon, I have made 3 attempts to use a Visa card to donate online. The credit card number is always listed as incorrect (trust me, it isn't) and it will not accept the transaction. I just wanted to call this to your attention in case others were having difficulty on line when not using PayPal. The check is in the mail. :-)

Peter S, October 8, 2005 - Hi Jon, I wonder if you (or any of the visitors to your site) have had a chance to review the findings of the NORwegian VItamin Trial (NORVIT) presented at the European Society of Cardiology within the last two months. It basically throws doubt on the hope that using a folic-acid/B-vitamin combination to lower homocysteine can decrease clinical events. In fact the study shows that just the opposite may occur with heart attack and stroke risk increasing. I am not a doctor so my opinion is not medically founded, but anyone taking folic acid and B-6 in heavy doses should take notice. The study,according to the principal investigator, Dr K.H. Bonaa, proclaims that the "The homocysteine hypothesis is dead. Homocysteine is not a causal risk factor; it is an innocent bystander." The study involved 3749 patients over a 3-1/2 year period.
Jon's note: I thought this idea (taking high folic acid doses) died several years ago so quite looking for new info on it. Sorry.

Giorg, October 8, 2005 - Hi everyone, In the last blood test it came out I have high uric acid. I know it could be caused by Lasix, but I am taking just 10 mg of it. Could it be for the L-Arginine, 3 mg per day, that I take? Should I stop it? I would not like to ask it to my cardiologist, since he does not want me to take supplements, and he thinks I stopped L-Arginine some months ago. Thank you.
Jon's note: A quick look might suggest that arginine can promote gout. However, when you start digging in to purines, proteins, and pyrimidines, you discover that it's just plain complicated. I can't find any info to support that arginine supplementation raises uric acid level. I take more arginine than you do and more diuretic as well. However, I take a wide mix of amino acids instead of just arginine, which may make a difference. I don't have any problems.

Evelyn J, October 8, 2005 - Hi, I am a new CHFer. I have a few health problems. I am an ex-smoker, have bad back and knees, and hip pain. I am 45. I don't understand this and I need help. Thank you.

Roger G, October 9, 2005 - News Flash - St. Jude Medical says cosmic rays may affect memory chip in some older ICDs. The models affected include Photon DR (Model V-230HV certain serial numbers, Photon Micro VR/DR (Models V-194/V-232), and Atlas VR/DR (Models V-199/V-240). See I wonder if this means we should avoid space travel if we have an ICD? Ha!

Roger G, October 9, 2005 - Hi, Another ICD item is that a new ICD can use the cellular phone network to transmit imformation about its functioning automatically to your doctor's hospital of choice. See
Jon's note: Mary Anne mentioned in a post on October 4th that she has one of these.

Tom S' October 9 reply to Jon's October 8, 2005 - I definitely agree with your assessment, Jon.

Pat Y's October 9 reply to Evelyn J's October 8, 2005 - Hi Evelyn, When I first found this site I spent hours reading much of it. It helped me understand my disease. Just click "Search This Site" at the top of this page. You will be led to a wealth of information. I went back to information time and time again until my brain began to put a lot of it together. A nurse associated with a surgeon commented that I was well educated on my disease and I promptly gave this site credit. By the way, my check was sent to Jon/this site on October 1st. Another will be sent November 1st. I now send one like clockwork each month as I want to keep this site up and running.

Mary Anne M, October 9, 2005 - Hi, In August my Toprol-XL was increased from 50 mg per day to 100 mg. It seems since that time, I have had increased sweating and much more active bowels. Has anyone else experienced this with Toprol-XL? I've been put on spironolactone since 9-21 at the time of my ICD implant, and wonder which, if either, of these drugs could be causing this problem. I break out in a sweat with no exertion, then of course, get cold. I am planning to talk with my cardio doc on Monday but wondered if anyone had any input in the meantime. Bless you Jon, for this site, a true blessing to all of us in this boat.
Jon's note: I have had heavy, too-easy sweats ever since getting heart failure. It's very hard to stop once it gets started. I had them on Coreg and still have them on Toprol-XL but I had them before starting any beta-blocker.

Mary Anne M's October 9 reply to James' September 26, 2005 - Hi James, When I feel a cold coming on, I take echinacea purpurea root, zinc, and vitamin A. I may take two echinacea and one of each of the others for two or three days. Usually, that seems to work for me. The saline douche for the sinus is very effective.. You can buy a "neti" pot for just this purpose online. There is a recipe included for the nasal wash, one which calls for both sodium and bicarbonate of sodium. There's nothing like good old Vicks salve rubbed on the throat and chest too! I don't know if it really does anything but it makes you feel better - just like a kid again!

Sandy N's October 9 reply to Evelyn J's October 8, 2005 - Hi Evelyn, You have come to the right place for help. This board has so many people of all ages with CHF and I can tell you I came here, just as you have, looking for answers as to why I got this and how to help myself (two years now). Yes, if you join all of us and read this site from cover to cover you will understand so much.
     First, you're not going to die, well, not now anyway. If you follow the simple rules associated with CHF and do as your doctor says (and yes, change doctors if he does not spend a lot of time with you and answer all your questions, get you on a good cocktail of meds. Good luck to you and hopefully, in time you will also share your thoughts and ideas with some of us.
     I am so sorry about your back and knees. You're much too young to be in back pain.

Jacky B's October 9 reply to Jon's October 8, 2005 - Hi Jon, We are a strange breed, aren't we? It makes us happy when the docs find something! I know the feeling! Take it easy Jon, and don't worry about erratic posting. Hoping they will find a solution to your problems. Jacky.

Nancy S' October 9 reply to Karen S' September 28, 2005 - Hi Karen, I have had CHF for about 4 years and I've never stopped working. I got my BiV pacer about a year after I was diagnosed and I'm feeling much better. I have days when I don't feel like working and when I don't, I just take off. You do know that if you work for a company that has a certain amount of employees, you are entitled by law to the Family Medical Leave Act which gives you up to 12 weeks a year off work for medical reasons if your doctor fills out your paperwork saying it is necessary.
     I work with developmentally disabled individuals and was the supervisor of a residence when I first became sick. I stepped down because I wasn't up to the stress and then after a couple of years I took up my supervisory position again because I am no longer able to do the physical labor involved in the direct care. At times I feel like I'd like to stop working but I'm afraid that if I do I will become too lazy.
     Good luck and God bless you. I hope you feel well enough to work. My EF has been 35% just about since the beginning. It went up to 50% at one time but came back down. Thank you Jon, for giving us a place to come for support and knowledge. Nancy.

Tom S' October 9 reply to Betty L's October 8, 2005 - Hi, Does the form ask for a card "expiration date" and if so did you remember to enter it and did you check the card to make sure it was correct? I have had rejections with Visa credit cards for that reason. Also, some forms request a three digit verification number which appears on the back of the card where your signature should be. That may get rubbed off and be hard to read.

Tom S, October 9, 2005 - Hi Jon, Reading Lowell's post reminded me of a doozy of a dosing error. When I was in the hospital in February the doctor backed me off from Coreg 25 mg BID (twice a day) to 12.5 mg twice a day. I did not know he had changed the dose so when the nurse showed up with my meds I took one look at the amount of Coreg she was trying to give me and I said something was very wrong.
     She had read the 12.5 as 125 mg and was trying to make me take it. Needless to say, I made her call the doctor and check on the doseage. I wonder how a patient that wasn't quite with it would have faired with 250mg of Coreg daily. I doubt they would have been around for long at that rate. I never did understand why the doctor backed me off from the 50mg daily, and I wonder how much my "immeasureable" ejection fraction has to do with that?

Jon, October 11, 2005 - Hi everyone, Well, it may not be a miracle cure for what ails me but it's a start. It turns out that my testosterone levels were ridiculously low and getting lower, so I started steroids (the anabolic kind) today to bring me up to somewhere in the normal range. Amazingly, the first dose gave slight results in less than an hour, increasing my energy level. We'll see how much improvement occurs over time.
     If any of you male CHFers show good results on heart function tests but suffer a lot of fatigue, insomnia, inability to concentrate, shortness of breath, or possibly inability to maintain an erection for more than 10 minutes or so, consider having your testosterone level checked. Please note that this is a blood test that must be done early in the morning and must be done by a good lab - it took multiple tests to nail this down for me. By the way, it was one of our readers here who mentioned this to me first, which shows the depth of resource you all are! Jon.

Karen S' October 11 reply to Nancy S' October 9, 2005 - Thank you Nancy and others who replied to my post on September 28th. I am so new to this, I am still a little shell shocked at all that is going on. One of my first thoughts was how was I going to take care of my family. My EF is 20% and I have the BiV pacemaker/ICD inserted. My meds are Coreg, Lipitor, digoxin, Celexa, Aldactone and aspirin. My main complaint is nausea and extreme fatigue. I just started cardiac rehab and I have a positive attitude that I will be around for quite awhile. It has only been about five weeks since my diagnosis, so I am sure I will get stronger with a little time! Jon , thank you so much for this awesome resource and all your hard work! Karen.

Sharon L's October 11 reply to Peter S' October 8, 2005 - Hi Peter, I'm taking 5 mg of folic acid a day and have for 2 and a half years. My EF has risen from 42 to 49 but I have also lost weight (55 lbs) and started a program of exercise on a treadmill 4 to 6 days a week. What would a high dose of folic acid be?
     I also had trouble using my credit card last week and am going to investigate a PayPal account. Jon, I think it's time for certain aspects of this site to be paid for - i.e., all your research and maybe even this forum. Your time is worth something. For Canadians who use this site there is always the issue of exchange rates, but I would consider having a membership fee billed to my Visa each month.

Mary Anne's October 11 reply to Tom S' October 9, 2005 - Hi Tom, Your post reiterates that old warning: "Question, question, question" most especially with meds. You undoubtedly saved yourself some very serious complictions if not perhaps, prevented death.

Tammy L, October 11, 2005 - Hi All, My husband has heart failure with an EF of 30%. His EKGs and blood work have all come back normal and he feels fine. His doctor is pushing him to get a pacemaker. He does not feel like he needs one. With his job he can't have one anyway. The doctor also will not release him to work full time, and his work will not let him come back part time. He is getting very depressed. We can't figure out what to do. He does not want to go on disability, he justs wants to go back to work. Any suggestions would be appreciated.

Jon's October 11 reply to Tammy L's October 11, 2005 - Hi Tammy, I don't know what his line of work is but a person can go back to work "AMA" which means "against medical advice." That would be between him and his employer. e can also get a second opinion from another doctor, explain his situation and ask that doctor for a release to work full time again. Just some possible options.
     Also, does his doc want to give him a pacemaker, an ICD, or a combination of both? If a pacemaker, is it because he qualifies for a CRT pacer? Jon.

Cheryl C's October 11 reply to Betty L's October 8, 2005 - Hi all, Jon, I never did get going and mail a check like I said I would so I got bold and used PalPay today to send a credit card payment. I thought I better do that before I racked up more doctor and hospital bills. :-)
     Betty, I also had the same problem as you but I discovered the problem because I've run into it before. When you enter your credit card number, don't put the spaces in - just run all the numbers together. When I did that, the card went right through.
     Well, after backing my Coreg dose back down to 12.5 mg from 25 mg, I feel much better. I have more energy and the shortness of breath has mostly gone away. I was having trouble even trying to walk some for exercise and seriously wondering how some of you manage to walk 2 to 3 miles a day! I do think I was also trying to go too fast. I wasn't in the best of shape before diagnosis (too thin with no muscle tone) but now even the doctor notices the difference. I have gained 15 pounds, some of which is even muscle! I've got to say that for all the doctors saying things like "with your heart, you can't do that" I feel better than I have in years. When my PCP said that last week, I told him to stop saying that or he would make me feel bad. He apologized right away. I figure it this way: I will do anything that I really want to do and am able to do for as long as I can. If I should suddenly drop dead, how's that worse than lingering and suffering? If we're not going to really live like we mean it, why bother?!
     I don't mean to be stupid about all this and deliberately stop taking meds, etc. Maybe I can teach my doctors something new, though. We tend to be self-limiting enough sometimes without their help. I did get my flu shot (first ever) and pneumonia shot. I felt crappy the next two days and thought my arm would fall off, and then prayed it would. Today is a new day however, and life once again is worth living! Is everyone up to date on their flu shots? Cheryl C.

Mary Ann H, October 11, 2005 - Hello, My son was diagnosed with idiopathic cardiomyopathy two years ago. He did reach 36 mg of Coreg but his doctor dropped it to 25 mg a day because his heart rate is running mid to high 40s. He said that with 25 mg of Coreg you are still getting 80% of the benefit as if he were taking 50 mg. Does anyone have any info on that. His EF was going up with 36 mg. He went from an EF of 20% to the mid-40s and now I am concerned with the lowering of the dose, his EF may start dropping. He is only 23 and his doctor said it would be pretty hard for him to function with a lower heart rate, which the higher dose of Coreg would do. Any info would be appreciated.

Jon, October 12, 2005 - Hi all, Well, today it was the anesthesiologist's turn. I got steroids (anti-inflammatory kind) IV'd into my hip joint to see if the inflammation can be quieted down there. My MRI showed lower back disc problems but at this point I'm passing on treatment for that - I'll just grit my teeth. The back problem seems to be the result of wear and tear on the job in lumber mills, years gone by. I may be too sore to sit for long tomorrow. <g> Jon.

Tony M, October 12, 2005 - Hello, I'm glad your feeling better Jon (wink,wink). I would like to tell readers that if you're taking Neurontin, watch out! I just had a second fusion on my neck C1-C7 (that's all the discs in your neck) I had two done last year and the rest of them also went out and I had to have a second one close to three months ago. It's very painful. I was put on Neurontin last year for pain management. It was a long strange ride on this drug. It's worse than Vioxx.
     It seems that the company that owns the drug admitted (in a court in Florida) they paid doctors with vacations and other ways to write this drug for what is called off label reasons. It was made to control seizures. I was told it would help my nerve pain and my neck pain. It was also supposed to work like a light dose of an antidepressant but not as strong.It worked for pain but I like to have lost it on this drug. It's very strong and they had me on 1800mg daily of this stuff. I cannot remember things that happened while on this drug after I was taking the full dosage after working up from one pill a day to four a day. I was twitching and jerking in my sleep and had insomnia worse than ever. I also was very depressed and had it not been for my wife, I would have lost it.
     I quit Neurontin (don't quit cold turkey) three months ago when I had the operation and have regained my thinking and can remember what I did last week. This to me was a very strong drug. I did some research and there's a number of people having problems with this drug. The drug also can harm your heart and I had my ejection fraction drop last year from 50% to 25% or maybe a little lower and it was contributed from pain but I was on this drug for months before that check up.
     On the 27th of this month I get my semi-annual heart checkup at The University of Alabama Heart Center. I have a feeling now that this drug might have caused my ejection fraction drop, not blood pressure spiking from pain. I can't wait to see my heart doctor and ask him a million questions like I always do. Take care all, Tony Myrick.

Jim M's October 12 reply Sharon's October 11, 2005 - Hi Sharon, My PCP put me on 7 mg folic acid per day before I was diagnosed with cardiomyopathy. I began going to a CHF cardiologist about four years ago and he has not reduced or taken me off the folic acid. His nurse told me that they have occasionally prescribed dosages of 8 mg for some patients, but my PCP, who consults with my cardiologist, says 8 is too much. Even with 7 mg, my homocysteine is still a little high, but neither of my docs seem worried about it.

Beckie, October 12, 2005 - Hi Jon, I had sinus surgery 9/19 for polyps to see if it improved my sleep apnea. I was doing well heart-wise with an EF from 20 to 50% in 18 months. My meds got all messed up in the hospital and home, and I missed several doses of Coreg. I ended up starting back with great dizziness and passed out. I ended up in the ER with a blood pressure of 60/30.
     Another interesting thing was my EKG came back perfectly normal. They did it 5 times because they couldn't believe it was the same one they were looking at from the doctor's office. The only diagnosis was sinus tachycardia P100. I am having my first Vo2Max on the 24th. I am just now back on the treadmill and still slow from my surgery. They will not change the date for the Vo2Max. Is there anything else I should be doing to prepare for it? I am 56. Thanks, Beckie. rebekah.hanks
Jon's note: Don't do anything you wouldn't be doing if there was no Vo2max test coming up. This is not a pass or fail test, this is looking to measure your body's ability to obtain and use oxygen during activity. Train to increase your Vo2max after the first one, which is called your "baseline" measurement.

Betty's October 12 reply to Jon's October 11, 2005 - Hi Jon, I had no idea of the health problems you were having. My son, when in his 30s, developed "idiopathic adult onset of hypogonadatropism" which gave him all the same symptoms but also made him sterile and he and his wife really wanted children. There also was a decline in his cognition (which has since returned, thank God).
     To make a long story short, he commuted to Massachusetts General Hospital in Boston from Colorado for a period of 4 years to receive treatment. It started out being very frequent (once a week) and tapered down considerably until the end. He was involved in a research project and fortunately they paid for all his medications, tests, hospitalizations, etc. The result is that he is now on a maintenance dose of testosterone which comes in a gel form and is rubbed on the upper body. He also now has 2 wonderful children, thanks to Mass. General. They still have not identified the reason this all started when it did. Good luck to you and to feeling much better soon. Betty.

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, 2005 Jon C.

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