The paperwork never ends The Archives
September 16-31, 2003 Archive Index

Shelly 9-16     seek ADA experiences
Valerie R's 9-16 reply to Daniel's 9-15     my experience
Ruthie A 9-16     warning about dental shots
Jon's 9-16 reply to Ruthie A's 9-16     tough times ahead
Sheryl C's 9-16 reply to Jack's 9-15     coping with heart failure & more
Joe S' 9-16 reply to Jack's 9-15     coping with heart failure & more
Kate's 9-16 reply to Jon's 9-16     health insurance and Disability
Jon's 9-16 reply to Kate's 9-16     health insurance and Disability
Tracey C 9-16     dental work and numbing drugs
Clara D's 9-16 reply to Ruthie A's 9-16     dental work and numbing drugs
Tom S' 9-17 reply to Jon's 9-16     Disability
Jon's 9-17 reply to Tom S' 9-17     Disability
Ben B's 9-17 reply to Jon's 9-16     Disability
Jon's 9-17 reply to Ben B's 9-17     Disability
Diane's 9-17 reply to Jon's 9-16     Disability
Norma W 9-17     dentist experiences & more
Jon's 9-17 reply to Norma W's 9-17     site access
Louise D 9-17     seek ways to improve kidney function
Jon's 9-17 reply to Louise D's 9-17     kidney function
Kate's 9-17 reply to Jon's 9-17     SSD and more
Jon's 9-17 reply to Kate's 9-17     SSD
Joe S 9-18     SSD experience
Jon 9-18     national healthcare experiences & posts
Valerie R 9-18     seek uncommon foods' sodium count
Gatha E 9-18     do I lose SSD when I start Social Security?
Louise D's 9-18 reply to Jon's 9-17     I am sure it's my kidneys
Jon's 9-18 reply to Louise D's 9-18     just better to make sure
Bill C 9-18     seek CHF doc in Palm Coast, Florida area
Pat 9-18     questions about gout, drugs
Jon's 9-18 reply to Pat's 9-18     gout and drugs
Pat's 9-19 reply to Jon's 9-18     switching meds
Lane C 9-19     update, if you need any help
Jon's 9-19 reply to Lane C's 9-19     trying to decide on chat room
Bill C 9-19     seek Lotensin experiences
Bonnie 9-19     seek CHF doc near Clinton, Missouri, USA
George B's 9-19 reply to Pat's 9-18     gout experiences
Shelley 9-20     transplant rejection questions
Jon's 9-20 reply to Shelley's 9-20     transplant rejection
David's 9-20 reply to Bonnie's 9-19     CHF specialists in Missouri & more
Pat 9-20     how do I go about this?
Jon's 9-20 reply to Pat's 9-20     use your cardiologist
Jack D 9-20     has anybody taken this stuff?
Bill C's 9-20 reply to Jon's 9-19     finding that info
Joy K's 9-22 reply to Jack D's 9-20     sodium polystyrene sulfonate
Monica 9-22     update
Margaret D 9-22     found CHF resource online
Bonnie's 9-22 reply to David's 9-20     thanks for the info
Jeff 9-22     seek CHF doc in New Jersey
Kate's 9-24 reply to Jeff's 9-22     online resource
Crystal S 9-24     how do I get others to understand this?
Lane C's 9-25 reply to Jon's 9-19     it sure is frustrating
Greta's 9-25 reply to Crystal S' 9-24     when others don't understand
Mel G 9-25     seek Coumadin experiences
Marly's 9-25 reply to Pat's 9-18     questions about gout and more
Maggie R's 9-25 reply to Crystal S' 9-24     discovering new aspects of my CHF
Lydia Moore 9-25     CHF causes and heart burn questions
Wayne 9-25     Atkins' and meds questions
Jon's 9-25 reply to Wayne's 9-25     Atkins' and meds opinion
Margaret D's 9-26 reply to Lydia M's 9-25     CHF causes and heart burn
Patrick 9-26     seek info on cholesterol levels
Tom S' 9-26 reply to Mel G's 9-25     my Coumadin experience
Lane C's 9-26 reply to Lydia Moore's 9-25     CHF causes and heart burn
Kate's 9-26 reply to Crystal S' 9-24     coping
Rick 9-26     coping
Robert S 9-27     does anyone have thyroid trouble?
Kathy 9-27     questions about changes in care
Joe S 9-27     low carb diets
Jon's 9-27 reply to Joe S' 9-27     low carb diets
Bill C's 9-27 reply to Rick's 9-26     interaction helps me
David W's 9-27 reply to Rick's 9-26     coping with illness
Jack D's 9-28 reply to Joe S' 9-27     low carb diets
Deb 9-28     seek device & arrhythmia advice
Joe S' 9-28 reply to Jon's 9-27     has anyone experienced this?
Kate 9-28     insurance and Guidant devices
Robert 9-28     allergic to sulfa - need diuretic!
Natalia's 9-29 reply to Kathy's 9-27     controlling edema
Jon's 9-29 reply to Kathy's 9-27     controlling edema
Jim I 9-29     don't give up & seek heart transplant recipients
Valerie R 9-29     seek alternative to mustard
Deb 9-29     seek Natrecor experiences
Tom P 9-29     stomach bloating with ACE inhibitor
Jon's 9-29 reply to Tom P's 9-29     stomach bloating with ACE inhibitor
Kate's 9-29 reply to Valerie R's 9-29     alternative to mustard
Joseph P 9-30     seek Medicare information
Valerie R's 9-30 reply to Kate's 9-29     mustard and sodium
Joe S' 9-30 reply to Jack D's 9-29     CHF, diabetes, diet & more
Lane C's 9-30 reply to Valerie R's 9-29     mustard, salad dressings and sodium
Joy K's 9-30 reply to Deb's 9-29     Natrecor general info

Shelly, September 16, 2003 - Hi, I am considering applying for ADA qualification at my work. Basically this will help me keep my job if I am qualified as a person with a disability. I understand heart problems are common under ADA. Does anyone have this currently? If so, what kinds of requests did you make for reasonable accomodations? Any info is greatly appreciated. Thanks, Shelly.

Valerie R's September 16 reply to Daniel's September 15, 2003 - Hi Daniel, I am glad you are going to a CHF doc for a second opinion. I went to a heart transplant team after being in the hospital 3 times this year and my doc told me to see them. He sent files. I have an EF of 10% and all sorts of rhythm problems, a leaky mitral valve, CHF and cardiomyopathy.
     They gave me a Vo2Max stress test or metabolic test which involved a treadmill, a breathing device, and echoes before and after, as well as Ekg and blood pressure monitoring constantly. I scored 11 ml/kg/sec and under 14 qualifies for transplant. However, they are not listing me at the moment because I am quite well compensated. I've learned to keep sodium intake low, aiming for 1000 mg per day.
     The transplant team may need a referral from your doctor, but they decide what tests you get. Be sure to study Jon's site and to stay low sodium. I wasn't doing a good job on that this school year, and I paid for it!

Ruthie A, September 16, 2003 - Hi Jon, Congrats on your good news - I think. It almost seals in stone that you are gonna lose disability, right? You sure have a lot on your plate. Aren't you glad you have the peace of God to envelope you? I don't know what I would do without Him in my life.
     I have a word of warning about numbing medicine given when you go to the dentist. A common ingredient of the more effective numbing medicines (like novacaine) is epinephrine, a stimulant that shrinks (constricts or contracts) blood vessels. This drug has a direct effect on the heart, making it beat faster and harder. Often a patient experiences shaking and/or sweating as well.
     I have had a lot of dental work done lately and found out the hard way about this ingredient. It's always a good idea to ask what a doctor or dentist is giving you, but it may be really important now to find out what is in the numbing medicine. Not knowing could get you in a lot of trouble, as it did me. I am fine now, but had several tough days of CHF. At any rate, be careful. Ruthie A.

Jon's September 16 reply to Ruthie A's September 16, 2003 - Hi Ruthie, Yep, it's gone, probably soon, since I sent them a letter telling them my heart function had improved again. My wife's job is also gone sometime in the next 8 months and there go all our health insurances as well. Goodie, goodie. Jon.

Sheryl C's September 16 reply to Jack's September 15, 2003 - Hi Jack, You do need help to deal with your feelings right now. Feeling bad and losing almost everything can be overwhelming, especially the loss of your family when this is a time you really need some support. There is help for you, both emotional and financial. It may take some time to get money help but it will happen.
     If you attend a church, go talk to the priest or pastor. Even if you don't attend a church, do that. For sure he or she can help you with the stress of being sick and may even be able to provide some short-term financial help. If you can prove low income, certain pharmaceutical companies will help with your meds. Ask your doctor about this.
     Remember that because we are very sick and even because of our medications, we can be depressed and have thoughts like: "Sometimes I think death may be a better option than life." This is never true. Depression that lasts longer than 2 weeks or seems overwhelming may need to be shared with your doctor. Things can get better so try to think positively. Good luck, Sheryl C.

Joe S' September 16 reply to Jack's September 15, 2003 - Hi Jack, I don't know where you live but medical help is usually available anywhere, at county hospitals at least. Also listen to Jon; his words of advice are great. I went through depression like you, a few months ago, and I was getting well. I challenge you to pray and ask for spiritual guidance. The apostle Paul went through horrible events in his life yet still praised God. I do disagree with Sheryl C about life always being better then death, but we are not the ones who decide when. I challenge you to try what Jon said and ask Jesus for help. What can you lose? Joe S.

Kate's September 16 reply to Jon's September 16, 2003 - Hi, I don't understand why your Disability should disappear just because you have shown improvement. You are still symptomatic with dyspnea and we all know that improvements can come and go. I've had several episodes of improvement, but my docs never sent in forms suggesting I could return to a normal life.
     Also, start shopping now for health insurance. COBRA should cover you for awhile but you need to have had insurance in the past 60 to 90 days in order to get new insurance so never let it lapse. My husband and I finally got insurance through our local Chamber of Commerce. We had to join for $60 a year and now get corporate rates with no company contribution so it costs a bundle, but is still considerably cheaper than personal insurance policy, almost $1,000 per quarter cheaper.
     We had the personal insurance for awhile but copays are very high, med costs are higher, and there is simply more coverage on everything with a corporate policy. I had to quit work in 1994 and my husband was injured in 1998, costing him his job as well. Finding work at age 54 with 2 herniated discs, glaucoma and hypertension has proven impossible. He has a part-time job that pays the cost of insurance almost to the penny, but rates are going up 16 to 17% in January, so the struggle continues.
     Whatever you do, may I suggest most sincerely that shopping for health insurance become your priority. If your wife is not already in the health care field, she should be retained in that arena. They can't find enough techs and nurses around here. I hear they are actually bringing nurses in from third-world countries just to fill the vacancies. My husband was retrained in the computer field just as the Nasdaq collapsed and the dot-coms landed on their dot-rear ends.
     Best wishes that it all works out for you and yours. Think health care. We aging baby-boomers are falling apart! Kate.

Jon's September 16 reply to Kate's September 16, 2003 - Hi Kate, SSD is not symptoms-based, it is numbers-based. I sent SSA letters when I improved (not my doctors) simply because I am required to do so. Regarding insurance, I simply won't be able to afford it when I lose my SSD Disability and my Disability pension. When one goes, the other goes in my case. Remember that my family will lose all our current income.
     I am not certain about insurance regulatory information because I have seen conflicting information from supposedly reputable sources on even the basics; so what follows may be wrong. HIPPA has a 63-day grace period for pre-existing condition coverage if you've had coverage for the past 12 to 18 months straight. COBRA does not apply to me unless I get a job with group coverage so shopping around now is impossible. I have not had a job in 9 years and have been on Medicare over 7 years. Going to an individual plan eliminates the COBRA and HIPPA options. Our state's high-risk pool is unaffordable.
     Please, if anyone has other information on this, include your sources in your post! My sources are state government web pages. My wife is in healthcare but there will literally be zero jobs in her type of work locally when her job bites the bullet, thanks to HCA - a long story. Jon.

Tracey C, September 16, 2003 - Hi, I've also had a lot of dental work lately and my CHF doctor asked that the dentist use Carbocane. I had none of the bad feelings that novacaine gave me. It doesn't numb quite as long, so they have to inject you a few times if it's a long procedure, but it's worth not having the fast heart beat.

Clara D's September 16 reply to Ruthie A's September 16, 2003 - Dear Ruthie, Thanks for making others aware of the problems associated with epinephrine. In my case, it caused severe headaches which would last for at least two days after having dental work done. I put up with it for years before speaking up. Don't do that. There are other effective numbing agents. They don't last as long but they do the job and the dentist can always give you a second injection if necessary.

Tom S' September 17 reply to Jon's September 16, 2003 - Hoooboy, Am I ever confused? Who is the "I" in the case of this post? Is it you Jon, or Katie, or is it the infamous editorial "we?" Who was required to report their condition or numbers or whatever? This whole post posed more questions than answers to me.
     Are you about to lose your Medicare and Disability because you reported an improvement? Man, that sounds a little like self-immolation. I had an improvement at one time, then a sudden reversal brought me back down to the point where I am actually looking at the possibility of meeting the requirements for supplemental oxygen. An arterial blood oxygen saturation of less than 88%, so I would be in no hurry to inform SSA about any improvement because in my experience it has always been followed by a serious downturn.
     I also don't remember reading anywhere that I was required to report changes in my condition especially when they were not reported by a doctor. I have had SSD evaluations in the past few years - three to date and I remain on SSD after 7 years and doubt seriously if I will ever improve to the point I will be off of it.

Jon's September 17 reply to Tom S' September 17, 2003 - Hi Tom, I don't see how your condition relates to my condition. I quote my original post on the subject: "... my heart function finally tested normal by echo." Now really, how do you think SSA is going to view that?
     When a person posting uses the first person - "I" - it refers to the person posting. The forms I (Jon <g>) signed when I was approved for SSD included documents requiring me to report any improvement to the SSA as it occurs. A brief excerpt from my actual copies of that form [SSA-16-INST] and other official SSA documents regarding Disability follow:
     "If this information changes [your condition as reported initially] it could affect your benefits. For that reason it is important that you report changes to us right away." In another SSA document, "You must promptly report any improvements in your condition, your return to work, and certain other events ..." That original SSA document from my first benefit payment is entitled "Changes To Be Reported And How To Report" and it says, "Failure to report [the following] may result in overpayment that must be repaid.". Next from last on that list is "[if] Your condition improves."
     Self-immolation? Quit being so dramatic. ;-) I report downturns as well as improvements in a timely manner, as required by the terms of my SSD. Jon.

Ben B's September 17 reply to Jon's September 16, 2003 - Hi, I read somewhere in a book called The Blue Book or something like that, about heart size being a criteria that can help you remain qualified for disability. This is a book they use as a guideline for disability. I can't remember the exact name. When they were cutting me off and I was trying to buy some time I used my heart size. Like you, I was worried about health care. My EF was 35 to 45%, but my heart was about 6 cm. As I recall, the size cutoff was pretty low - around 5.7 cm. So if you need to stay on disablility, emphasize LV diameter and use your doctor. In my case I went back to work because I felt able to do so, and I haven't had any problems for the past 7 months, while working and going to school. I know other people with improved numbers aren't quite so lucky with their function matching their numbers. For sure, if they knock you off and you can't afford the meds you'll soon be back on.

Jon's September 17 reply to Ben B's September 17, 2003 - Hi Ben, That's from 402.A. (see, and it says, "Documented cardiac enlargement by appropriate imaging techniques (e.g., a cardiothoracic ratio of greater than 0.50 on a PA chest x-ray with good inspiratory effort or left ventricular diastolic diameter of greater than 5.5 cm on two-dimensional echocardiography), resulting in inability to carry on any physical activity, and with symptoms of inadequate cardiac output ... "
     As you see, it requires symptoms severe enough to prevent any physical activity, inadequate cardiac output, etc. My cardiac output has returned to normal, despite my heart size being 6cm+.
     I'm not trying to be difficult people, just realistic. ;-) Jon.

Diane's September 17 reply to Jon's September 16, 2003 - Hi, I am so dependent on this site for info! I have posted before. I am 48 and have been on State Retirement Disability for 2 years and Long-Term Disability for 3 years. I have an enlarged heart, CHF, SOB, valve leakage, and the weight of two people. Every change in my condition was done by a physican. Even though your numbers are good, you need the change in heart dimensions to report along with your latest tests. I will pray things will work out.
Jon's note: I appreciate the prayers. I don't see any correlation between your situation and mine, however. Again, I am being as factual as I can be, not just difficult.

Norma W, September 17, 2003 - Hi, I don't post very often but I do check here every day and it helps me tremendously to know others have the same problems. At the dentist's for instance. My PCP said it was the adrenaline that caused the pounding heart beat, so the dentist has found a substitute analgesic. I get the same reaction, only more violent and sustained, from MSG.
     On another matter, I would like to say Jon, that many of us would be willing to pay a yearly fee to access this site. Those who couldn't afford it would of course still be allowed access, but the fee schedule could be adjusted. Just as politicians ask for $20, $50 or $100, the user could choose which amount he would like to contribute. If none of the above, the user would not be penalized. This would give you an income, or at least pay some of your medical costs. You do so much for us, please find a way to let us do something significant for you. Love to all, Norma W.

Jon's September 17 reply to Norma W's September 17, 2003 - Hi Norma, Thanks for the vote of appreciation. :-) However, anyone who wants to donate can already do so. Because of that, I'll not charge for site access. A corporate sponsor or donor is the way to go. So far, I have not had any luck down that road, but may get there yet. Jon.

Louise D, September 17, 2003 - Hi, I just discovered this site about a week ago and I wish I'd found it sooner. It's been very helpful. I am a 36-year-old female and I was diagnosed with CHF (class 3b) in December of 2002. I also have angina and diabetes.
     I just tried to take metoprolol. However, the day after the first 12.5mg dose, I had a really bad backache. This may have been related to a kidney problem. I get the same backache after 3 days on 25mg Aldactone (spironolactone) or 25mg HCTZ, and I have to stop taking it until I get really bad edema. I had angina the first time I took metoprolol and it made me feel better almost immediately. It also improved my exercise tolerance a little. I wanted to keep taking it, but not at the risk of kidney damage.
     Is there anything I can do so that I can take this med? I thought about trying cranberry juice to see if that will help. Of course, I probably can't drink as much as I would need to help make my kidneys stronger. Does anyone know of any other home remedies that would solve this problem?

Jon's September 17 reply to Louise D's September 17, 2003 - Hi Louise, I know that it can, but a backache does not always mean kidney problems. The way to find out is to have your kidneys tested in a regular pattern while taking each med, making changes slowly, one at a time. That would seem more certain than seeking home remedies, at least until you know whether or not this is related to kidney function. Do you take an ACE inhibitor and if so, is it Monopril? That drug is partly handled by the liver, reducing kidney stress. Jon.

Kate's September 17 reply to Jon's September 17, 2003 - Dear Jon, I guess it is safe to say you've flabbergasted most of us. Having signed the paperwork nearly 10 years ago, I had no recollection of the fine print. I did get notification from Social Security last year that they now offer federally paid retraining and placement assistance. It is called the "Ticket to Work and Self-Sufficiency Program." It should be explained at The program is being run by Maximus, Inc. at 1-866-968-7842. I understand Maximus can also give you numbers for your state Protection and Advocacy Agency, groups that conduct retraining and placement.
     One has to admire your honesty, but I know I would not have taken the step without consulting my doctors and my attorney.
     Should anyone be interested in getting the Unites States to implement a national health care system, you can get info at Kate.

Jon's September 17 reply to Kate's September 17, 2003 - Hi Kate, I always read every legal document I sign all the way through. It drives people crazy but I do it anyway. I am simply following the requirements for having Social Security pay me a Disability benefit. I should point out that when I received SSD documents originally, this notice was almost impossible to miss, being at the top of page 2 in large type - no fine print involved, really.
     I did receive notification about the Ticket To Work program and have considered it, so far deciding against using it for several reasons, unimportant here. Jon.

Joe S, September 18, 2003 - Hey, You people should come to California. I had no problems with the state. The feds gave me a no answer at first for SSD but after meeting with them, there was no problem. Of course, being 60 at the time helped since they simply gave me my regular Social Security two years earlier with a discount. Regarding disability, it again was no problem until my local county worker screwed it all up and blamed me. I received a fairly large inheritance in 12/2000 and I told them. They said I would lose Medical, but they forgot to do it and are now accusing me of fraud. I wish I had all the assets they said I have. By the way, only earned income counts against SSD - inheritance does not. Joe S.

Jon, September 18, 2003 - Hi everyone, I have received two posts that advocate a national health care system for the United States. These are based on personal experiences. While such experiences are valid, I have been down this road before. For every positive experience, I will - as always - receive at least one negative account from someone in the same country under the same system. It accomplishes nothing and persuades no one. Those who want national healthcare want it and those who do not, do not. I have yet to see a single person change their mind based on lengthy previous discussions here.
     I also must point out that national healthcare systems' performance can radically vary from one region of a country to another region of the same country. Believe me, I have received more accounts - pro and con - of such healthcare systems over the years than you can imagine.
      I am sorry if it offends anyone's sense of what should be discussed here, but I am not posting such experiences. If you want to chew me out, that's cool, but please do it by e-mail. Thanks, Jon.

Valerie R, September 18, 2003 - Hi, I have an EF of 10% and metabolic stress test number of 11 ml/kg/minute. I have IDCM and CHF. Anyway, I am very aware that most of us have some serious problems so this is a very stupid question, but I can't find the answer on the Net.
     I was walking at the mall the other day, starving. Although there are restaurants, most foods are prepared in advance and I'm tired of hamburgers with no bun. I stopped at a Crepe place, a little hut with barstools and counter in the middle of the mall, and ordered a crepe with nutrella and bananas and crepe. I know the nutrella is 30mg sodium per 2 tablespoons (I read the bottle) and bananas are negligible, but I cannot figure out how many mg of sodium would be in the crepe (preprepared). It was very good.
     I have even written to various companies but never received an answer. Does anyone have a book of uncommon sodium counts? I would really like to have an idea, because it would be a nice place to have a lunch crepe (mine was dessert). Val.

Gatha E, September 18, 2003 - Hi, I am like Joe - SSA has not notified me in 4 years, maybe because in just a couple of years I collect Social Security due to age. I didn't know they took SSD away from you when you get old. Am I correct in this?

Louise D's September 18 reply Jon's September 17, 2003 - Hi, I am actually taking Accupril, which supposedly protects my kidneys. This was the only med I was taking before I added metoprolol. However, the ace inhibitor didn't seem to help much when I added the metoprolol. I am sure it's this beta-blocker that's causing the kidney problems. I only took one 12.5mg dose and the next day I had the pain. This was the only difference in my treatment. Plus, since I stopped taking the metoprolol, my backache stopped. I did the same things to get rid of the backache the day it occurred that I do when I get backaches caused by taking diuretics too long - I drink water or cranberry juice and take vitamin C. I had this problem awhile and all the medical reference books I consulted also point to a kidney problem. I also doubt it is the low dose aspirin I take daily. I've been taking that for months with the Accupril and hadn't had this problem.

Jon's September 18 reply to Louise D's September 18, 2003 - Hi Louise, Accupril is eliminated mainly by the kidneys - up to 96% of a dose. On the other hand, Monopril is eliminated about 50% by the liver and 50% by the kidneys. If you are concerned about your kidney function, I would discuss switching to Monopril.
     I appreciate your reasoning - but have you had this confirmed by kidney function testing? Why not be sure? A medical reference book is just not the same as a blood or urine test. Jon.

Bill C, September 18, 2003 - Hi, I need to find a CHF doctor in the Palm Coast, Florida area. How do I open this to anyone who might have information for me? You mention problems of sleeping on your left side. I have problems sleeping on my right side. I get full of congestion when I do. Have you heard this before? Any thoughts or comments would be appreciated. Bill.

Pat, September 18, 2003 - Hi Jon, I was just diagnosed with gout. I had two attacks two weeks apart of a swollen and exceptionally painful left knee. I was told that my heart meds may have caused this. The doc gave me 50mg indomethacin to take with my next 3 meals and then one a day for 2 more days. A friend just told me that this drug is bad for CHF patients. The doc had said it was okay. Now I am a liitle confused. Any info on this? Do many CHF patients develop this condition? Thanks, Pat.

Jon's September 18 reply to Pat's September 18, 2003 - Hi Pat, Yes, quite a few people who take loop diuretics get gout sooner or later. Indomethacin is a very bad idea for a person with heart failure. Read this and let it load so it goes to the exact section you want: Jon.

Pat's September 19 reply to Jon's September 18, 2003 - Thanx Jon, I called my PCP and she is switching me to Bextra; she agreed with you. I hope that this is okay for me. The indomethacin actually helped and I had only taken one.

Lane C, September 19, 2003 - Hi Jon, It's been awhile since I visited the board and was catching up on the news. I saw where you are adding a chat and FTP site. I am limited in knowledge but full of ability to assist you if you need. I don't work at the present. My doctors have forbidden that until my EF rises. I can and will do anything you might need help with. Just drop me a line if a situation arises.
     I appreciate your site. When I was diagnosed with CHF and IDCM. I was devastated, to say the least. I went from working 60+ hour weeks in air conditioning to no work as of June 15, a blow to my male ego. With the help of God, my wonderful wife, 100mg of Zoloft and other meds, and your web site which educated me, I got through this dark period. Thanks again for your hard work over the years. Lane Chaney.

Jon's September 19 reply to Lane C's September 19, 2003 - Hi Lane, My memory fails me but didn't you run web site for a long time? On another topic, I decided against an anonymous FTP simply because no one said they were interested. One area I really need help in is deciding which third party server/chat applet to use. I can buy a commercial one but am really struggling over which one to purchase. If anyone has any experience in such matters, please e-mail me - I'd love to hear from you. Jon.

Bill C, September 19, 2003 - Hi, Sorry, my memory is so bad I can think of something and forget it by time I pick up a pen. My normal memory is pretty good though. As you can see, I found all of you. I have another concern: Lotensin. When I first got it, I took it with all my meds and found I wanted to pass out. I read somewhere that Lanoxin, and Lotensen should not be taken together, one or the other but not both together, so I stopped the Lotensin. Yesterday I used my last Lanoxin. I haven't gotten out to get new a prescription so after 10 hours sleep, I took a Lotensin. I just woke up after 6 more hours sleep. Is this a normal reaction? I'm actually afraid to take the Lotensin. I don't like not being in control. Thanks anyone, for any input. Bill.
Jon's note: Where did you read that Lanoxin and Lotensin should not be taken by the same patient? Maybe you read that you should take them few hours apart, but I have never read that.

Bonnie, September 19, 2003 - Hi, I just found this web site. I have a-fib, CHF, cardiomyopathy, and high blood pressure. I also have a pacemaker. I live at Clinton, Missouri. I would like to know how to find a heart failure specialist in my area. I am now seeing a cardiologist but need a second opinion on some things. He recently put me on cardizem and took me off digoxin (Lanoxin). I'm also taking prinivil, Lasix, potassium and slow mag. I would like to hear from anyone that would care to reply. I have read that cardizem is bad for anyone with CHF. What do you think?
Jon's note: If you have diastolic heart failure or pulmonary hypertension, it is possible that a calcium channel blocker may be okay for you but you're right to seek another opinion as soon as possible.

George B's September 19 reply to Pat's September 18, 2003 - Hello Pat, I am sorry to hear that you have gout. I have CHF, DCM and gout. I take 300mg allopurinol to prevent gout attacks.
     I work hard to avoid attacks, but because I have to take a diuretic I sometimes have gout attacks. During attacks my doctor told me to change meds and take 0.6mg colchicine every one to 2 hours - up to 6 doses a day - at the first sign of gout. Allopurinol will not help during an attack and I have to be off it for 2 weeks after I am over the attack.
     I had gout before my heart problems and I had it under control. I have had gout attacks in my knee, big toe, and ball of my foot. It makes it had to exercise but my doctor says to swim for exercise when I can't walk. Good luck, George B.

Shelley, September 20, 2003 - Hi, My mother-in-law had her transplant 3 weeks ago. She is now in phase 3 rejection. I have read the section on rejection and it sounds like it is normal to have a couple of rejections, but I am worried.
     Are there any data/statistics showing what her chances are with this early onset of rejection. I feel that I need to understand what the worst case scenario would be so that I can help my husband cope. If she does reject, how does the end come? I hate to be so blunt, but I appreciate a site like this where questions you can't ask in person, and can still be answered. Thank you.

Jon's September 20 reply to Shelley's September 20, 2003 - Hi Shelly, As I understand it, rejection shows up simply as increased "unwellness." Chronic rejection usually means accelerated arterial narrowing while acute rejection means more severe symptoms in the short-term, usually in the first year after transplant. Such symptoms may include increased fatigue, irritability, edema, reduced EF, nausea, etc,... One problem in diagnosing it is that immunosuppressive drugs can also cause these symptoms; that's why you get so many heart biopsies in the 6 months to one year after transplant surgery. Although meant for pediatrics, see for a table of symptoms.
     Acute rejection does increase risk of death. However, so many factors are involved, it's hard to know just what the risk for any specific person really is. I would watch how she responds to treatment and take my cues from that. Jon.

David's September 20 reply to Bonnie's September 19, 2003 - Hi Bonnie, I would recommend going to Barnes-Jewish hospital in St. Louis. They have CHF specialists. I go to Dr. Gregory Ewald. He teaches at Washington University. I usually see an intern and then Dr. Ewald. They will take time and answer any questions you have. I only see him every 6 months. They are very good and they do heart transplants there.
     On another note, I have gout also. I take 300mg allopurinal and it seems to keep my gout under control. I have not had an attack in 2 years. Also, eating cherries and strawberries helps as well, or drinking cherry juice.
     I also am going forward with weight loss surgery. I have a surgery date of October 1st. I am still taking required tests. They found in a breath test that I have a pylori bacteria in my stomach. I am taking antibiotics for it. Could pylori bother my heart? They say pylori causes peptic ulcers. I hope everyone is doing okay.

Pat, September 20, 2003 - Hi Jon, I found out that the Bextra my PCP prescribed is also bad for CHF. One of the docs in the cardio group told me to take 3 Indomethacin since I had already started. I actually feel a lot better today.
     My question is, who should I see about getting a prescription for the colchicine and the allopurinol? My next cardio visit is December 3rd. I am getting the impression that my PCP is clueless about this type of gout and the interaction of all the meds. On the other hand, I sometimes feel foolish calling the cardiologist for every little thing. Thanx for your advice. Pat.

Jon's September 20 reply to Pat's September 20, 2003 - Hi Pat, Your cardiologist gets the big bucks - let him earn them. ;-) Jon.

Jack D, September 20, 2003 - Hi, Has anybody been experimented on with "sodiuim polystyrene sulfonate," a potassium-removing resin? That's what I feel like is being done. My doc called this in to the pharmacy but they didn't have it in stock. I had to wait several days. The pharmacist said it was a laxative. My instructions were to take this for 6 days and then get a renal (kidney function) panel done. Mind you, I didn't speak to the doc. His nurse called the prescription in.
     So I got the stuff (a pound of it!). It looks and smells like powdered dirt. The instructions were to drink 4 teaspoons (15 grams) four times a day mixed in water. Has anybody had any experience with this stuff? The warnings are pretty spooky.

Bill C's September 20 reply to Jon's September 19, 2003 - Hi Jon, Please excuse me, I'm very new to the computer. One of my roomate's girlfriends decided to update us to AOL 9 and everything seems to have changed. I can't find some things. I did find one new site that seems to support not taking Lanoxin and lotensin together. In the master taskbar search for reaction of Lotensin and Lanoxin together. When you get the site, click on Medication Adviser 2002 benzadril hydrachloride, oral. Scan this site till you get to what products might interact with this medicine. Bill.
Jon's note: Sorry Bill, But those directions will only work for people on AOL, not for people using an ISP to surf the web.

Joy K's September 22 reply to Jack D's September 20, 2003 - Hi Jack, I am a registered nurse. Kayexalte (sodium polystyrene sulfonate) is used to treat hyperkalemia (high potassium). I have always used this drug in a hospital setting because patients with severe heart failure, hypertension and edema are at risk for arrhythmias, electroltye imbalances, seizures and dig toxicity, just to name a few. Potassium levels are drawn at least once daily with this drug. Our patients at the hospital where I worked were always placed on a cardiac monitoring system when this drug was given. Severe alteration of electrolytes can occur (sodium overload) and also calcium levels can change dramatically because the drug is not selective. Premixed forms are available instead of mixing the powder. Joy.

Monica, September 22, 2003 - Hello, I just wanted to let everyone know that I had my cardiac cath Friday and it showed no blockages. My heart is having artery spasms, which when I have chest pain I am to take my nitro to relieve it. We are excited about no blockages but now I have something new to research and that is spasms in the heart. I have been home recouping and am doing well so far. Also, they took me off Monopril, which I have taken for 4 years, and they put me on Norvasc.

Margaret D, September 22, 2003 - Hi everyone, I found a great web site with a 3D video on CHF. I didn't see it listed in the links, Jon, but I did scan quickly. Go to and scroll down to "3D Interactive Human Atlas;" Go to "heart" and then to "CHF." It's also great for explaining to your families about CHF.
Jon's note: I can't check this one out due to my browser security settings.

Bonnie's September 22 reply to David's September 20, 2003 - Hi David, Thanks for the info. St. Louis is quite a way from me. I live at Clinton, Missouri, but I would make the trip if necessary for my health. It sounds like those doctors are what we all need, if they take time to talk to you. Good luck on your surgery October 1st. God bless, Bonnie.

Jeff, September 22, 2003 - Hi, I am looking for recommendations for a CHF specialist in northern New Jersey, preferably the Morristown area.

Kate's September 24 reply to Jeff's September 22, 2003 - Hi, I found a great resource at They rate hospitals by location and health condition. Just go in and pick state and then city. It will give you a list of medical conditions. I picked "heart failure" for my research. The site will then give you a list of hospitals in your area, along with ratings. If I didn't know someone who could personally recommend a doctor, I would start with a good hospital, call them and ask for the name of a doctor affiliated with their hospital. You can also get ratings on doctors, but there is a fee for that. I hope this helps. Kate.

Crystal S, September 24, 2003 - Well, I have good news after being diagnosed with CHF almost 10 months ago. My EF went up to 35%, after starting out at 10%, then up to 35%, back down to 25%, and back up to 35% again. Don't get me wrong - I am very happy to have a better number - but everyone is acting like I am cured.
     I am where I was a month after I got out of the hospital. I'm not trying to be negative or cynical. I'm just trying to be realistic. I still get tired going upstairs and I still can't carry my kids. I do feel better in general with more good days than bad, but I'm not cured. How do I get this across to people without seeming negative?
     I promise I'm happy with this number, no more transplant talk for now and I do know it's a good thing. I just know numbers can fluctuate and I don't want to bank too much on them.

Lane C's September 25 reply to Jon's September 19, 2003 - Hi, I wish it were true that I had run a web site, as long as it wasn't anything porn related. <g> That would give me a career to pick up at this time. I wouldn't have to be applying for SSD and filing bankruptcy. I know I don't have any choice at this time, but it so goes against what I have felt about paying my bills. Oh well, both my creditors and myself will get over it.
     It makes me regret declining all that disability coverage that credit cards were trying to get me to sign up for. On the other hand, if I had gotten that coverage, it would have definitely warded off my present heart problems. You know how it works - you don't need coverage if you have it.
Jon's note: Unfortunately, running a site as it should be run requires a healthy web master, believe me.

Greta's September 25 reply to Crystal S' September 24, 2003 - Hi Crystal, I'm glad to hear you have improved some. A step forward always helps you to feel better about yourself. Now, as to "everyone" who is acting like you are cured. Unless they are your very close loved ones, I wouldn't worry about what condition they think you are in.
     You are the best judge of your feelings and limits. It could be they are so eager to see you doing better that they are grabbing at any little snippet of information to support that. Be patient with them. They have never been where you are and with good fortune they never will be. If it were me, I would explain to them one time about your CHF and if they still don't get it, consider the possibility they may be hardheaded or in denial concerning your CHF.
     Whatever the reason they are treating you as if you are cured, you must still do things at your own pace. I have not had this problem with my family and friends since my CHF diagnosis in March of this year, so my "words of wisdom" are totally off the top of my head.
     I am sure there are others out there who will reply to your post who may have better suggestions. Hang in there. It is hard to identify with someone unless they have walked a mile in your shoes. Blessings, Greta.

Mel G, September 25, 2003 - Hi, My doc is starting me on Coumadin (warfarin) and I'm not thrilled about it. He has mentioned the new anticoagulant Ximelagatran (Exanta), which should be licensed in Australia soon. Have any of you talked to your doctors about it? I understand it's due to be available in the US this month or next.
     I'm particularly apprehensive about warfarin because I live in such a remote rural area, and blood testing is not easy or quick from here, not to mention the fear of a major bleed. My doctor talked to me about a home INR testing kit to try to allay some of my concerns. Are there any comments from some of you who are using the Harmony or Coagucheck machines at home?
     I had a small stroke a few weeks ago. I have a-fib and bouts of ventricular tachycardia along with heart failure. The stroke did not leave any lasting deficits. I am stubbornly trying to convince myself that I'm not at further risk and I don't need one more med! I am feeling a bit down.

Marly's September 25 reply to Pat's September 18, 2003 - Hi all, I have had IDCM for past 10 years or so and am on complete CHF medication except no beta-blocker. Last weekend, I had for the first time severe gout. My blood works shows that indeed I have incorrect levels of urea, creatinine and BUN.
     Can this be due to my dose of 160mg per day furosemide? This morning I lost consciousness and was jolted back to life when my ICD (implanted in July of 2002) fired, also for the first time. The electrophysiologist advised me to get an upgrade to a biventricular ICD/pacer (Insync cost around $50,000) since my meds are already at max dose and my blood pressure seldom rises above 90/60. Any advice from anyone will be highly appreciated.

Maggie R's September 25 reply to Crystal S' September 24, 2003 - Hi, I've read several posts here from folks complaining that people treat them like they are well. I couldn't understand that attitude because I hate being treated like I'm ill! Then I had a situation where it threatened my life!
     I rode from Houston down to southern Texas with friends, a 6 hour drive. They had no working air conditioner in the car and it was the middle of summer here. I actually got so hot that I nearly passed out and that night I had hallucinations and dreams of murder! We took a walking trip across the border to Mexico and I just could not keep up with the rest of them and found myself struggling along by myself. I never make an issue of my limitations, but I learned then that sometimes you must! They got the air conditioner fixed before I would come back with them.
Jon's note: I think most of us learn our limitations the hard way with CHF.

Lydia Moore, September 25, 2003 - Hello everyone, I have a couple of questions that maybe someone here can answer. I have IDCM. I just never have been able to understand why doctors or researchers cannot find the cause. When I think of something that could have caused it that makes common sense, then the doctor always says that would not have been it.
     However, if something can't be figured out, how can something also be excluded? I guess I just don't understand. I feel sometimes like I need to know what caused this ICDM. I guess it doesn't matter. All that matters is the present and how to cope, and take care of myself.
     Another question I have is, does anyone here get heart burn a lot? If so, what do you take for it? I hope everyone is doing better and is in good spirits. Life is precious, so we've got to stay in the moment. God bless to all, Lydia.

Wayne, September 25, 2003 - Hi Jon, I've been trying Atkins' without any success, although I haven't gained any more weight since I started 3 weeks ago. The Atkins web site stated that beta-blockers could inhibit the Atkins' approach so I e-mailed them asking what the mechanism is that causes this problem, but they were unable to answer that question.
     Also, in their site is this comment, "If you are on a beta-blocker, you have little cause for concern about discontinuing your medication. In the first place, the controlled carb lifestyle that you are adopting lowers blood pressure itself. In addition to L-taurine, you may control blood pressure with magnesium, hawthorn, Co-enzyme Q10, carnitine and garlic. Because doing Atkins will naturally lower your blood pressure, continuing to take pharmaceuticals could put you at risk for an overdose. As always, speak to your doctor before discontinuing any medication."
     That is contrary to everything else I've read about stopping beta-blockers. Still, I think the Atkins concept has considerable merit and plan to continue to try. Any words of wisdom? I can't seem to connect to your page on coreg, excercise and Atkins'. Thanks, Wayne.

Jon's September 25 reply to Wayne's September 25, 2003 - Hi Wayne, The Atkins' web site and the last edition of the book are way off base regarding meds, in my opinion. Foolishly, they assume everyone on beta-blockers takes them just for high blood pressure, ignoring CHFers. Also, they drastically overestimate the effects of a low-carb diet on the body's fluid balance and other bodily systems. I don't believe beta-blockers have an adverse effect on the eating plan's success, nor do I believe that the eating plan eliminates the need for any drug.
     Please retry I will soon be switching that domain to a new web host but in the meantime it is not always running smoothly. Jon.

Margaret D's September 26 reply to Lydia M's September 25, 2003 - Hi Lydia, I can just tell you how my doctor came to the diagnosis of IDCM. There are many possible causes for dilated cardiomyopathy. The alcoholic type was ruled out because I don't drink. The hypertensive cause was ruled out because I have always had low blood pressure. The ischemic type was ruled out with the right and left heart cardiac cath, which showed clear coronary arteries. I had a blood test for lupus which was negative and some other blood test that ruled out hemachromatosis. That left a possible virus. Since the virus that may have attacked my heart muscle had already come and gone, it didn't really matter if that was the cause. The treatment is the same. It is my understanding that most doctors believe that almost all IDCM is due to a virus but it doesn't really matter. We now have to just go forward and do everything we need to do to get better: strict 2 gram or lower sodium per day diet, taking the correct meds in the correct way, exercise, and a positive attitude!
     As far as the heartburn goes, it is common with heart patients. Some cardiac drugs like beta-blockers and calcium channel blockers can make reflux worse. I had been on generic Zantac for years and just recently was having such severe chest pressure that I went on Prilosec and it really helped. I hope this helps!

Patrick, September 26, 2003 - Hi, My father's doctor told him that his HDL (good cholesterol) is too close to his LDL and that there should be more of a difference. My father seems to think that it's supposed to be somewhere around a 25% difference. I can't find anything on Google about a percentage between HDL and LDL, only HDL to overall cholesterol ratio. His doctor told him that with his HDL being so close to his LDL, reading that he will not live very much longer. Is this doctor full of baloney? Does anyone know what the percentage should be between HDL and LDL? Thanks and God bless. Patrick.

Tom S' September 26 reply to Mel G's September 25, 2003 - Hi, To keep this brief, I have been on Coumadin for 6 years and getting monthly and sometimes tri-monthly tests for that same period of time. Recently, my cardiologist shifted to the single needle prick, blood drop testing, which was a great relief. Other than the inconvenience of the monthly bloodletting prior to the simpler blood test, I can't really say Coumadin is that much of a bother. I think people make more of it and provide a lot of fodder for urban legends concerning this drug than what most folks actually experience with it. I have never had a problem with either excessive external or internal bleeding from cuts or bruises even though my PT was in a 2.5 to 3.0 range. I have never had a stroke but know patients who have, and believe me, Coumadin is a much better alternative than even the remotest possibility of stroking.

Lane C's September 26 reply to Lydia Moore's September 25, 2003 - Hi, Like you, I too have IDCM and also CHF. The central point of idiopathic dilated cardiomyopathy is that it's cause is unknown, but more than likely a virus, according to my doctor and research I've done. On your comment about how it doesn't matter how you got it, but now that you have it, is exactly correct. Take care of yourself and eventually it will not nag you as it did me at first.
     On your second question, yes I get heart burn and take antacid for it, Zantac 75mg. There are many items available, but be careful to check for interactions with meds already in your daily routine. If you need to talk, ask questions or just vent your fruatration, feel free to e-mail me direct. At this time I have a ton of free time, and will be glad to help in any way. Others here on the board help as well. It's a Godsend, thanks Jon.

Kate S' September 26 reply to Crystal S' September 24, 2003 - Dear Crystal, In the words of the great frog, "It's not easy being green." Kermit knows us. His theme song is universal in its message. It is never easy being part of a group perceived as different. After we leave the party, we know there will be talk about how we are really doing. People sometimes welcome us with that lilt of pity in their voice or make that little extra fuss because we are so ill.
     Sometimes, people will take whatever opportunity comes along to sink happily into denial. Either way, it makes it that much harder to forget, even for a moment, that we are different. Perhaps it is best we don't forget - even for a minute. Be open about your illness. Let people know how it feels to be ill. Open their eyes to the reality of your world and allow them to overcome their fears and prejudices. Be a teacher. Make a difference. Show some green skin. Kate.

Rick, September 26, 2003 - Hi, I have not posted here in a long time. I got my Disability after my union sent a guy over to have a talk with them. I still have a weak heart and I am pooped most of the time. The reason I have not been to this site very much is that I sometimes feel that if I sit around thinking about and reading about my heart problem and that of others, I'm not doing myself any good. Maybe I'm wrong but I think if I just try to be positive and not dwell on my bad heart, my bad back, my diabetes, my sleep apnea and on and on, that maybe I'll be doing myself a favor?
     I hope nobody takes my post wrong. There's nothing wrong with coming to this site and asking and gathering information. I just feel that in the past I was sitting around thinking about my troubles all the time and that doing so was not helping me. Thanks for letting me vent and feel free to comment on my post. Thanks, Rick.

Robert, September 27, 2003 - Hi, I just celebrated - if that is the word - my first year as a CHF patient. I have been well compensated since my diagnosis and despite small obstacles and major life changes, I have not experienced a great deal of complications since diagnosis.
     This morning though, my CHF doc's office called me to let me know that I had an elevated thyroid reading on my last blood test (on 9/17) and that they wanted to run a complete thyroid panel to determine whether I have hypothyroidism as a result of or alongside CHF, and to determine whether I should see an endocrinologist. The nurse told me this is not uncommon and I have had some weight problems since diagnosis that she feels may be attributable to thyroid issues. Has anyone else experienced this? What can I expect?

Kathy, September 27, 2003 - Well, I just spent 5 days in Club Med and the only thing they decided was I must have had a virus that wore me out, and I had atypical chest pain. My echo hasn't changed. The doctor took me off Lasix and I can't figure out why. He said my heart failure is compensated, for the first time in 13 months. My question is, if I stop taking Lasix won't the edema come back?
     I'd like to find the currently accepted standard of care recommended for dilated cardiomyopathy, so I can discuss with him his reason for the change. I am taking Coreg, Cozaar, protonix, Aldactone (spironolactone), lipitor, and aspirin.

Joe S, September 27, 2003 - Hi, Regarding low-carb diets, in my case it was the final straw that set off my CHF. My employer strongly suggested I try it by eating no carbs, but tons of hot dogs, cheeses, etc. I nearly died. In my opinion, after years of battling, everyone including CHFers needs some carbs, sugars, sodium, but we must regulate it all. That is hard to do. By eating the way I do now, I have lost over 30 lbs, and recently had a clean bill of health in all areas. A grocery store recently opened in Nevada that sells low-carb foods. Go figure. Joe S.

Jon's September 27 reply to Joe S' September 27, 2003 - Hi Joe, Obviously no physical plan of action suits every person. However, like any diet, you have to study a low-carb plan and do it right to get benefit and avoid harm. Eating tons of hot dogs would make anybody sick! It sounds like you were eating enough sodium to indeed bring on an episode of heart failure. However, low-carb eating can be done low-sodium to prevent that problem.
     Doing a low-carb diet correctly takes a considerable amount of research and effort. My wife and I have been on very-low-carb diets for over a year with excellent results and my heart function has improved considerably during that time. My CHF specialist said to me, "I like what I see with Atkins" and his wife is now on it.
     Others will struggle and fail, because it just doesn't fit their style. I do not think that a low-carb diet done correctly (I stress that part) will do any lasting harm. I do cringe whenever someone uses the phrase, "eating right" because no one knows what eating right for any given person really is. Jon.

Bill C's September 27 reply to Rick's September 26, 2003 - Hi, Never miss a chance to interact with others. I learned that the first time my chest was opened. I was 50 and scared to death at the time, with a wife who had no more clue than I did as far as pain, diet, exercise went.
     A hospital support group, which is similar to the thing you have here, helped me get through it all. I've since developed other problems such as CHF but reading the words of others gives me ideas to research and also hope. It shows me (forgive me everyone) that I could be so much worse. Don't be afraid to open your eyes and smell the air. Enjoy the fact that you can still look at yourself in a mirror. Life may not be perfect, but it's ours to enjoy. Good luck, Bill.

David W's September 27 reply to Rick's September 26, 2003 - Hi Rick, You are correct in saying it is not good to dwell on our illness. You have to keep as busy as you can. I know I have to get up every morning to take care of my animals. I have chickens, ducks, turkeys, cats, and spoiled little chihuahuas. They have to have feed and water every day, so that gives me a reason to get up and gives me something to do. Maybe a pet would help you. Dogs give you a lot of love for what little work it is to take care of them.
     Also, try to do anything you can to help yourself. That is why I am having gastric bypass surgery October 1st. I weigh 308 lbs and if I can lose 100 pounds or more, it will help my heart. Even if I don't get much better, at least I would be a better candidate for a heart transplant if necessary. I have a 400 pound aunt and if my surgery goes well, maybe she will have surgery as well. It helps to think of helping others because there is always someone who is worse off.

Jack D's September 28 reply to Joe S' September 27, 2003 - Hello Joe, In order to eat a low-carb diet, first you have to find the nutritional content of the foods you decide to stuff yourself with. Hot dogs are not a low-carb food. I don't think hot dogs really qualify as a food.
     Low-carb diets just like any other real diet, are accomplished by eating things that don't come prepared, like hot dogs or any other food in that same basic shape; by avoiding foods that come in a can, jar, bottle or box. That pretty much leaves fresh meat, seafood, fruits and vegetables. That also eliminates ham, pastrami and all other cured meats and fishes. That means reasonable amounts of hard cheeses and eliminates processed cheeses. So what all these means is you have to start preparing all your own meals and put some effort into your eating habits.
     Most Americans are not willing to put much effort into anything because we have been brainwashed into believing everything should be simple and that 99% of our problems can be solved by taking a pill or watching Oprah.

Deb, September 28, 2003 - Hi, I have a 15 year old daughter that was diagnosed with IDCM last December. In January she was implanted with a defibrillator and pacemaker. Most recently she was complaining of the feeling that she had to gulp air to make her heart beat, really hard beating and chest pain. After going to the doctor and having her device interrogated, they said she was fine.
     I had a fit and said no she isn't fine if she is having all this and it is a problem for her, she isn't fine. One of the docs said she is probably thinking about it too much, therefore feeling more of the beats, etc. I convinced another doc to change the settings on her device to try to capture more information. I also made her an appointment with another doc for a second opinion.
     The second doc discovered that she was pacing 75% of the time. He didn't like this and lowered the threshold slightly for this. He is not sure if she is having SVT or just fast heart rate. She is on Lasix, metoprolol, Coumadin and Cozaar. She was switched to Cozaar from Altace. They tried to double her dose and she was hacking up a lung, so they put her on the Cozaar. I have read that people have experienced tachycardia from Cozaar even though it isn't listed as a side effect.
     She had been having trouble with PVCs, bigeminy and trigeminy but since they doubled her metoprolol, they are much better. I don't know what exactly I am looking for, but if anyone has any info they think will help me, I would appreciate it. What tests can be done to try to determine the cause of the tachycardia? Thanks,

Joe S' September 28 reply to Joe S' September 27, 2003 - Hi, You are 100% right Jon, but I had no idea at the time what I was doing was going to aggravate me so badly. When I started to get so sick, the boss fired me but neither he nor I knew I had CHF then, so no claims were made that the job caused my problem, just stupid me. Oh well, the surgery so far seems to have fixed me fairly well, except that I still have fears going to sleep and not being able to breathe, like back in 1997. This afternoon though, while trying to sleep on the couch, I must have cut off the oxygen to what little brain I have and woke up not knowing where I was or who I was. It took over an hour for this to go away. Has anyone else experienced this? Joe S.

Kate, September 28, 2003 - Hi, I just thought you might find this of interest. They autopsied my dead ICD and found a defective circuit board. Guidant's feeling is that the unit was probably malfunctioning for some time before it died. Supposedly this is the first time this has happened with thousands of implants done over several years. I believe it is possible that as the number of units increase, this will become a more common occurrence.
     After months of misery, about the only thing I am getting out of this mess is the satisfaction of telling all my docs, "I told you so." So far I have not seen any improvements in my health with the new ICD.
     New York state just passed a law allowing health insurance carriers to charge 20% more to sole proprietors and individual policy holders than to businesses with 2 or more employees. We have also been told to expect an additional increase of 20% in January for a grand total of 40%. Expect this to catch on quickly. Our insurance costs will now exceed what I make a year from SSD.

Robert, September 28, 2003 - Hi, I need some advice if anyone can help me. I am allergic to sulfa and the loop diuretics seemed to have run their course (Lasix, Demadex, etc.). I do need a water pill to help me breathe, yet when I take one I become very ill, with 3 visits a week to an ER for dehydration from vomiting. My third doctor seems ready to quit on me like the other two did. I am fighting the fight and asking for help from God. Any ideas would be most gratefully appreciated. Thank you.
Jon's note: Have you looked for Edecrin?

Natalia's September 29 reply to Kathy's September 27, 2003 - Hi Kathy, Good job! As far as I know, when one of my old doctors told me about Aldactone, he said it was also a diuretic, just slower acting than Lasix. So taking you off Lasix could be to keep you hydrated and keep your minerals in balance (Lasix causes a drop in magnesium that can hurt your heart), and the slower acting diuretic is still doing some work on edema. Just weigh yourself everyday and stay with the heart healthy life style. I had a heart transplant and I sill eat low to no sodium. I got used to it honestly and now even one chip is terribly salty. I like knowing that I have control of my heart this time around. Natalia.

Jon's September 29 reply to Kathy's September 27, 2003 - Hi Kathy, Some heart failure drugs are used to prevent fundamental problems while others are meant to treat symptoms. Diuretics are used to treat symtpoms. If you have no edema when not taking them, you probably should not be taking them. When my EF measured normal but I had real problems with fatigue and lightheadedness, my CHF doc and I decided to stop diuretics and see what happened.
     Well, I tapered off Demadex slowly. Unfortunately, every day I took no diuretic, I gained roughly 3 pounds. I guess heart function isn't everything. <g> I am now taking 10mg Demadex every day, down from 20mg daily. So you may or may not need Lasix and there's only one way to find out.
     Aldactone is usually given to CHFers at 25mg a day to reduce risk of death, which it does well. However, at 25mg daily, it has no diuretic effect. Jon.

Jim I, September 29, 2003 - Hi, It's been awhile since I posted but I've been driving 140 miles round trip 3 to 5 days a week to see my dad. He is in Indianapolis waiting for a heart transplant, impatiently, I might add. I just want people to not get discouraged and give up. As I've posted here before, don't let a discouraging doctor's review make you believe that is the only option. If we had done that, my father would probably be dead. However, I found a physician through this site that has given us a lot of hope. We're far from out of the woods, but the optimisim is definitely helping.
     I would like to hear from other heart transplant recipients to share stories with. Please e-mail me and good luck to everyone! Jim.

Valerie R, September 29, 2003 - Hi everyone, I just wanted to say I am still vertical and feel fine. I want to thank whoever wrote about turning broth into ice cubes to freeze. I am doing it and it works very well. I also want to comment that I find the strained No Salt Added tomatoes (sold by the canned) works much better than No Salt catsup. You can strain your own too, but I am lazy. Is there anything to substitute for mustard?

Deb, September 29, 2003 - Hi, I talked to my daughter's original electrophysiologist. I have to take her there in a little bit. He had me double her metoprolol dose in the evening, and he is thinking that she will probably need to be hospitalized for 3 days and get something via IV called nesiritide. After this he will increase her dose of Cozaar and if that doesn't work, she will get a pic line and get another medication at home for a few days after this. Does anyone have any experience with nesiritide (Natrecor)? How long will this fix her for? Is this subjective, case by case? Once you get this, do you have to keep on getting it? I appreciate any advice, Deb.

Tom P, September 29, 2003 - Hi, Has anyone had experiences of abdominal swelling that was not caused by water-logged edema but was due to an ACE inhibitor? I have been taking 10mg daily of Accupril and do not feel I am water-logged, but have a distended belly, and often a mild nausea which subsides for a while with light food or liquid. Thanks, Tom P.

Jon's September 29 reply to Tom P's September 29, 2003 - Hi Tom, I have not experienced this, but it could be angioedema, which can occur in the stomach and intestines as well as throat. It is in the literature but few doctors seem aware of it. The only way to be sure is to have your doctor stop your ACE inhibitor. If the symptoms go away in roughly 24 hours, you probably have ACE inhibitor-induced angioedema. Jon.

Kate's September 29 reply to Valerie R's September 29, 2003 - Hi Valerie, Unless someone comes along to tell me otherwise, as far as I know, good old Coleman's Dry Mustard is just plain mustard powder. You can experiment with it mixed with water or you can add sugar, vinegar, whatever you fancy till you come up with something you like. It is a bit pricey, but a little goes a long way. The Brits use it mixed only with water and it is a traditional condiment with many English dishes. It was a staple in my grandmother's home.
     I'm glad you liked the ice cube tray idea. I use it for things like asparagus puree so I can pop a couple out any time, heat them up and use it as a base under salmon or any fish. It makes a pretty plate and tastes good too. Kate.

Joseph P, September 30, 2003 - Hi Everyone, I will start receiving Medicare insurance in January 2004 and I would like to know if there is a site that tells what part A and Part B will pay for; what kind of meds, specificily Coreg, Coumadin and the regular CHF drugs. What it will pay for in the hospital? Thanks. Joseph P.

Valerie R's September 30 reply to Kate's September 29, 2003 - Hi Kate, Thank you for the broth cube idea! I am trying to adapt a baked bean recipe, which calls for dry mustard. According to, Coleman's dry mustard is 200mg sodium per teaspoon, which is a great deal. I believe regular French's is only 55mg a teaspoon. I just this minute checked a bottle in my cupboard. I don't understand that. I really miss baked beans in the can but at 500mg per 1/2 cup, one cup would be my day's total!

Joe S' September 30 reply to Jack D's September 29, 2003 - Hi Jack, Where were you in 1997 when I needed you?! <g> Several months ago a nurse said I was mad at my body for betraying me. I told her it was the opposite - that I was mad at myself for betraying my body. Thank goodness a dietician had a class and told me what I needed to do, so I did. My cardiologist simply told me to cut down on salt. For about 5 years I have been walking every day and trying to exercise, which by the way, that same cardiologist told me to stop.
     When they told me I had diabetes type B, I immediately went to a dietician and found that this too could be controlled by diet, so I tried it and it worked. I had to stop going to one doctor because he denied that you could control diabetes through exercise and diet. Would you believe he said to my wife, "I bet you have no relatives with diabites." My wife replied that we only have 7, including both parents and a son. I stopped going to that PCP. Joe S.

Lane C's September 30 reply to Valerie R's September 29, 2003 - Hi, One thing I do to reduce the sodium of mustard and Ranch dressing is to mix sour cream with it. I mix 2T of sour cream to one serving of the mustard or dressing. It still tastes good and it's a lot lower sodium. Try the fat-free sour cream if you have to be careful with fat intake. If you go to Sam's Club, there is a Buttermilk Dressing (it's very close to the real Ranch) mix made by Tone's that I make with 2% milk and sour cream, and it's great! There may be other stores in your area that have it in stock. I also use less on my salad dressing when I have the dressing on the side and dip my fork in the dressing and then get my salad.

Joy K's September 30 reply to Deb's September 29, 2003 - Hi Deb, The drug nesiritide (Natrecor) is for decompensated heart failure in patients with shortness of breath at rest or with minimal activity. This drug promotes and produces relaxation of the smooth muscles and dilates veins and arteries. Results of giving this drug for longer than 48 hours are generally unknown. It is usually given as a large IV dose (bolus) followed by a continuous infusion. It can cause low blood pressure. Tell your daughter to report any discomfort at the IV site and to report dizziness, lightheadedness, blurred vision or sweating. I don't know if this helps you or not. Many blessings to you and your daughter. Joy.

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.

Talk to Jon Site Index