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

Janet T B 3-1     newly diagnosed, have some questions
Jon's 3-1 reply to Janet T B's 3-1     I hope others also reply
Tracey C's 3-1 reply to Jon's 2-27     BNP measurement
Jon's 3-1 reply to Tracey C's 3-1     BNP measurement
Jack D's 3-1 reply to Audrey's 2-27     you can't be serious
Nancy S 3-1     seek Kaiser Permanente CHF doc in California
Jon 3-1     national health care systems looking grim
Davida S' 3-2 reply to Jacky's 2-27     echo intervals
Joseph P's 3-2 reply to Janet T B's 3-1     ablation for a-fib
Norma 3-2     hope for improvement always exists
Ben B's 3-2 reply to Tracery C's 3-1     test results versus other factors & more
Jon's 3-2 reply to Ben B's 3-2     I agree - BNP test information
Gino's 3-2 reply to Janet T B's 2-1     asthma and CHF, Vo2max & more
Tracey C's 3-2 reply to Jon's 3-1     it's in fmols
Jon's 3-2 reply to Tracey C's 3-2     yuck! Hey, Walter K!
Janet T B's 3-2 reply to Jon's 3-1     arrhythmia, sodium, catecholamines & more
Jon's 3-2 reply to Janet T B's 3-2     arrhythmia, sodium & catecholamines
Davida S' 3-2 reply to Janet T B's 3-1     reducing dietary sodium
Mike 3-2     question on Disability lawyer's effectiveness
Joe 3-2     seek SSD evaluation experiences
Elaine W B's 3-2 reply to Sheryl's 2-25     thanks for advice, this site & more
Dick 3-2     seek transplant & arthritis experiences
Rob C 3-2     questions on living in Florida with CHF
Tracey C's 3-4 reply to Ben B's 3-2     how we feel is very important
Rex Bradley's 3-4 reply to Rob C's 3-2     dwelling in heat with CHF
Rex Bradley's 3-4 reply to Dorothy P's 2-25     meds side effect question & more
Tom S' 3-4 reply to Rob C's 3-2     dwelling in heat with CHF
Jon 3-4     birthday coming up
Anita S 3-4     Social Security tips
Monica's 3-4 reply to Rob C's 3-2     living in Florida, Social Security Disability
David A's 3-5 reply to Nancy S' 3-1     CHF docs in California with Kaiser
Dorothy Powell's 3-5 reply to Joe's 3-2     jumping through Disability hoops
Jon 3-5     BNP measurements
Susan B's 3-5 reply to Anita S' 3-4     Disability lawyers & more
Darlene 3-5     update, blood testing question
Scott Brown's 3-6 reply to Janet T B's 3-1     Coreg, life style changes, tips for coping
Cathy 3-6     increased SOB, could it be ACE switch?
Joseph P 3-6     what can I print out for him?
Jon's 3-6 reply to Joseph P's 3-6     printing out info
Bill B 3-6     seek angina experiences & answers, & more
Fred B 3-7     worried about blood pressure & heart rate
Jon 3-7     just venting a bit
Brandy 3-8     seek heart surgery-valve repair info & experiences
Jon's 3-8 reply to Brandy's 3-8     I hope others also reply
Tony's 3-8 reply to Fred B's 3-7     environmental factors affect my heart rate
Cristina L's 3-8 reply to Jon's 3-7     maybe it's an external factor?
Jon's 3-8 reply to Cristina L's 3-8     I think it's from a meds change & more
Pat Y's 3-8 reply to Jon's 3-7     sequence has been odd
Pat M 3-8     frustrated by ups and downs, seek advice
Maggie 3-8     ICD zap experience
Cindy 3-8     seek MUGA & test-taking information
Scott Brown's 3-8 reply to Jon's 3-7     left and right side questions
Jon's 3-8 reply to Scott Brown's 3-8     left and right sided failure, EF, remodeling
Rick M 3-8     cutting rx costs - a new career!
Davida S' 3- 9 reply to Rick M's 3-8     a good laugh
Nancy S' 3-9 reply to Maggie's 3-8     blood pressure, fatigue problems
Joseph P's 3-11 reply to Nancy S' 3-9     blood pressure, fatigue, ICD
Joe S 3-11     valve repair update
Julie G 3-11     got my SSD after one year
Rick M's 3-11 reply to Joe S' 3-11     we old timers are still round here
John Len's 3-11 reply to Rick M's 3-8     only one catch
John Len's 3-11 reply to Julie G's 3-11     SSA checks and meds costs
Karen F 3-11     prayer request concerning income
Jon 3-13     just took a day off is all
Shelby H 3-13     intro, seek some advice on coping
Craig A's 3-13 reply to Rick M's 3-11     still a newbie
Norma's 3-13 reply to Rick M's 3-11     any other 70 year olds out there?
Pam 3-13     does anyone else get painful PVCs?
Brenda 3-13     high USA medical prices
Jon's 3-13 reply to Brenda's 3-13     high USA medical prices
Tracey C 3-13     surgery caused weight gain - anyone else?
Jon's 3-13 reply to Tracey C's 3-13     saline IVs cause edema
Brian M 3-14     dropping in to say hi
Cristina L's 3-14 reply to Pam's 3-13     PVCs experience
Jack D 3-14     relaxin for hypertrophic cardiomyopathy
Nancy B 3-14     can heart meds hurt ligaments or tendons?
Davida S 3-14     seek Prilosec experiences
LeeAnn D 3-14     Disability review - how do I deal with this?
Walter K's 3-15 reply to Norma's 3-13     older old-timers
Tom S' 3-15 reply to LeeAnn D's 3-14     SSD reviews
Jon 3-15     SSD reviews
Maggie's 3-15 reply to Norma's 3-13     older old-timers
Herbert L's 3-15 reply to Shelby's 3-13     coping with new CHF diagnosis
Ruthie A's 3-15 reply to Davida S' 3-14     Prilosec

Janet T B, March 1, 2002 - Hi Everyone, Last week I met with my cardiologist for the first time as an outpatient. I am newly diagnosed with IDCM. The visit went well. He patiently answered our nearly 30 (no kidding!) questions. For some reason my heart rhythm popped back to normal a few days before the visit and for a few days after, but it's since gone back to palpitations. I guess it was just showing off. <g> For meds I am continuing on 5mg Altace once a day, which will probably bump up in time, and he started me on3.125mg Coreg at night. My blood pressure is low to begin with so we are going to have to go really slow with the Coreg. I noticed that it really slowed my heart rate down but all is well so far. If I can tolerate it, next week he will bump me up to 3.125mg twice a day.
     I will have my first MUGA on March 6. I know it is probably unreasonable of me to expect any improvement in this time, but I so hope for it. At least, I pray there is no further decompensation. My EF at diagnosis was 29% via cath. Other tidbits I learned are that I have a mild gallop in S4, my heart size in systole is 5.6, the other pressures in my heart and arteries are normal, and so far I have no swelling or congestion.
     We asked about adding a specialist to the treatment team and he was all for it. We have been looking around and we have an appointment at the Cleveland Clinic in mid-March for a second opinion. I am looking forward to getting input from someone who sees this every day all day. In the meantime my treadmill arrived and I am actually having some fun with the low-sodium diet. I know that sounds nutty but it's a challenge and I am good for it! I have learned so much in the past few weeks thanks to this site and the many good souls out there, hence the 30 questions posed to the doc. I see him in 2 months, well after the Cleveland Clinic visit.
     To switch gears, I have a few questions I wanted to bounce off any takers. First, can a very low sodium diet prevent congestion? I'm not congested yet and wondered if an even lower - say under 1000mg per day - diet could prevent it. Second, I thought my palpitations would go away with the meds I'm on but they have come back. The skips don't feel as strong as PVCs, but they are pretty constant. Can a normal regimen of meds make the skips go away? Third, I asked the doc about neurohormone tests but he said they were more for patients who are being considered for transplant and the same story for Vo2max. Any comments from your experience?
     Finally, since this heart nightmare began, I've noticed my very mild asthma (I've always doubted I really have asthma) has been back more frequently than ever. It's not bad, just a slight little rumble feeling and a slightly diminished peak flow. Has anyone else experienced this happening? Thanks to any takers and hugs to everyone, Janet T. B.

Jon's March 1 reply to Janet T B's March 1, 2002 - Hi Janet, Since insomnia has a grip on me, I'll get this started and let others finish it. Terminology can be confusing at first. Palpitations are when you "feel" your heart far more strongly than usual. Is this what you are experiencing or is it an irregular rhythm? "Skips" can mean different things depending on who is using the term - a doctor or a patient. <g>
     Low sodium diet alone cannot hold congestion at bay if a person's heart seriously weakens. However, it can play a very significant role. Neurohormone tests - if we're talking about the same tests - run about $1000 per person per test and require about 30 to 40 minutes in a quiet, undisturbed room with the blood being drawn by a highly experienced tech. These tests are rarely done except for certain clinical trials and in select patients who really need them.
     My CHF doc runs a Vo2max on many of his patients yearly. Most PCPs and internists will not even consider doing this. The rumble you mention when breathing may be asthma. It may also be lung congestion from CHF, or of course it may be something else entirely.
     I'm pooped; maybe someone else can add to this. Jon.

Tracey C's March 1 reply to Jon's February 27, 2002 - Hi Jon, Thanks for the BNP information. I panicked and called my doctor about my 509 results. Apparently it must have been calculated using something smaller than a ML because the range was under 1000 being normal, meaning my 509 was okay; confusing. I'm glad your dog is okay, Tracey.

Jon's March 1 reply to Tracy C's March 1, 2002 - Hi Tracey, The most common device in the USA for measuring BNP is made by Biosite (the Triage test), a San Diego-based company. That machine tests a range between 5 pg/mL to 1300 pg/mL. A pg is a picogram, which equals one 1/trillionth of one gram. (See this page for some medical units of measurement) Average levels as measured with this test kit in a trial are:

 age 45 and underage 75 and older
Non-CHF (healthy) men10 pg/mL47 pg/mL
Non-CHF (healthy) women17 pg/mL77 pg/mL
 class 1class 2class 3class 4
CHFers men146 pg/mL306 pg/mL557 pg/mL928 pg/mL
CHFers women149 pg/mL385 pg/mL614 pg/mL858 pg/mL

The info was sent to me was not in pg/mL. Maybe it would be wise for us all to be sure we know what units our doctors are using when we ask for test results. I am sure glad this came up because I will remember to make this clear when I ask for my own test results! :-)
     Your BNP reading - if it was indeed in pg/mL - puts you at a level normally associated with a woman between class 2 and class 3, meaning that you may want to consider more aggressive drug therapy to keep decompensation away from your doorstep. That's if I'm reading this right.Jon.

Jack D's March 1 reply to Audrey's February 27, 2002 - Hi Audrey, How's med school? Seems your details are just a little too concise and without any apprehension on your part. If this were really happening to you, you wouldn't be quite so flippant; been there, done that, know exactly what the feelings are. I hope you get a good grade.

Nancy S, March 1, 2002 - Hi, I live in the Sacramento Metropolitan area of northern California and our family is insured with Kaiser Permanente's HMO. Does anyone know a good heart failure specialist that works for, with, or through Kaiser? Does anyone have any wisdom on how to obtain the best service from Kaiser or at least a comparable HMO? Thank you very much.

Jon, March 1, 2002 - Hi everyone, National health care systems are looking less and less attractive these days, aren't they?! A few days ago Britain signed an agreement with about 30 French hospitals to do surgery on British patients. This was done to get those British patients surgery more quickly in France because the British national health care system waiting lists for surgery are so long, they are dangerous. Ouch! Jon.

Davida S' March 2 reply to Jacky's February 27, 2002 - Hi Jacky, Depending on the doc, echos may not be done sooner than every 6 months and some doctors may do it only once a year. Check with your doctor on an exercise routine. Recommended exercise from your doctor may help your quality of life. The best and easiest form of exercise is a walk everyday to the best of your ability. Start off slowly and build up your walks daily.

Joseph P's March 2 reply to Janet T B's March 1, 2002 - Hi Janet, My heart has a-fib even with all the meds and even with an ICD. What my electrophysiologist tells me is the electrical pathways in my heart need to be corrected. What he is going to do is an ablation which changes the pathways. I am age 52 and it is borderline if it will work or not, but I am on the plus side of this, Joseph P.

Norma, March 2, 2002 - Hello everyone, As I am a Canadian wintering in Florida, I don't visit a doctor or take any tests here for 6 months. The insurer I contacted in Canada advised they would cover every condition except anything to do with heart. Thus I am sort of living on the edge, but am taking my medicines religiously and using a lot of common sense in day to day activities.
     I wanted to write to reassure those who have just been diagnosed with CHF that one can fight back. I had my CHF episode 5 years ago at 65 years of age and was left with an EF of l9%. Last year, my cardiologist died and I have not as yet found one with whom I have empathy. The two I saw refused to acknowledge any improvement in my condition and advised that echocardiogram operators used different interpretations, therefore they put little credence in the latest one that showed a 25% EF. When I pointed out that I had no shortness of breath, no pain, and lots more energy, they seemed unimpressed.
     Anyway, to those of you battling a recent diagnosis, take heart, there is hope for a normal life. Thank you for this forum, it has helped me a lot, Norma.

Ben B's March 2 reply to Tracey C's March 1, 2002 - Hi, Aside from the obvious fact that we have to be sure we are talking apples and apples, I wanted to make a couple small points. I hope nobody gets mad at me. The first place we need to go for answers to our concerns is our doctors. If we don't understand a reading, we need to ask them first. I know you did this as soon as you could, but some people do not.
     Secondly, the BNP test is new. It seems fairly accurate in tests but there are warnings from the FDA that the test can have some innaccuracy, especially for women. My point is that EF measurements, heart size measurements, Vo2 measurements, and just the general feeling you have about how you feel, are not to be thrown out the window because of a blood test. I don't know what is more accurate, but I think they are all important measurements. Tracey, I think I remember that most of your readings on other tests are normal, and that you are working a full-time job. I don't know about how you are feeling but if I went in with normal numbers in everything else and feeling pretty good, and got a result that a blood test indicated I was significantly decompensated, the first thing I would question is the validity of that particular measurement. I guess that is sort of what you did, I just wanted to emphasize it.
     I know the mind is a powerful thing and just getting a bad reading on something can throw us into a panic where we conjure up all sorts of things in our mind. I remember when I first got diagnosed reading somewhere that a low lymphocyte measurement was a good indicator you would die from CHF. My lymphocyte measurement at that time was extremely low, and I was so depressed, I showed it to my doctor and he said not to believe everything I read. Well, that was over 5 years ago and now that measurement is normal.

Jon's March 2 reply to Ben B's March 2, 2002 - Hi Ben, I agree with the general outlook you describe. I should probably clear up the BNP test in general here, for everyone, though. First, it is meant mainly for diagnostics. This is a wonderful tool to prevent all those misdiagnoses lots of us here suffered. In less than 15 minutes, a BNP test can confirm a CHF diagnosis, in say, an ER.
     Also, in people who already have known heart failure (us), BNP result may give an early indicator of direction, allowing decompensation to be avoided, rather than indicating current decompensation. The BNP test does not actually measure or indicate decompensation. The BNP test detects the level of a hormone mainly produced by the ventricle of a stressed heart. It is used for:

  1. screening for potential heart failure or other heart problems not yet detected (see this)
  2. giving the doctor an idea of how the heart thinks it is doing <g> which indicates possible future direction

CHF docs use BNP mainly to sense what direction a patient may be heading, not what shape the patient is in now - the test was never intended to be used for classification - it's a screening tool. A good CHF doc largely relies on physical exam and how the patient feels to determine current condition. My own CHF doc routinely measures his patients' BNP, to aid in treatment decisions.
     I could not find an FDA warning on the test's accuracy (how to find anything quickly on a government web site?!) on FDA's web site, but the test kit itself gives pretty clear information on the difference in results to expect based not only on sex but also on age, as the tables posted yesterday show.
     Personally, I always base my own progress on how I feel, and frankly, it rarely agrees with any of my test results, but I assume I am just, how shall I say, "different." Uh, that's not quite how my wife puts it, but I can't repeat that here. <g> Jon.

Gino's March 2 reply to Janet T B's March 1, 2002 - Ciao, Jon has answered in a right way to many of your question. I would add a little:

  1. About palpitations, in my opinion you should have a holter monitoring period to clarify the quality and quantity of your arrhythmia
  2. About the Vo2max test. Usually I try to perform this test in all CHF patients I manage and who can tolerate it for 2 simple reasons. This test gives me information about how much CHF has reduced the ability to perform an effort (in other words how severe is the CHF), and what is the level of exercise I can prescribe to the individual patient in order to start rehabilitation. Vo2 test describes the prognosis better than EF
  3. About salt content, a low-salt diet reduces the need for diuretics, and for those with low BP it also allows them to reach higher dose of ACE inhibitors and beta-blockers
  4. About asthma, a decompensated CHF with congestion of the bronchial tree may provoke a raised bronchial hyperreactivity (cardiac asthma). Usually, this tends to go away with a proper treatment of CHF and congestion. If you suffer true asthma it should worsen with beta-blocker therapy so in the next week you would get an answer to this question. If your breathing improves with Coreg, your asthma was a consequence of CHF

Ciao, Gino. (e-mail withheld by Jon)

Tracey C's March 2 reply to Jon's March 1, 2002 - Hi Jon, Wow, that BNP info was very helpful. I had my doctor fax over the test and it says the units on my results are reported as fmol/ml and a normal result is anything less than 1,000. I don't know what a fmol is, but I seem to fall easily within the normal range. I'll have my cardio doc take a look at it. Do you know what the fmol is? Thanks.

Jon's March 2 reply to Tracey C's March 2, 2002 - Hi Tracey, Yeah, an fmol is a femtomole, or 10-15mol. Mole units are often used medically in academic or European circles because they are part of the International Metric System (SI). Unfortunately, they are harder to use because the measurement changes with the substance being measured. For instance, one fmol of substance A does not equal one fmol of Substance B. That's because it is a measurement unit based on molecular weight. Nothing like doctors to make everything too hard! I passed this one on to a CHF doc and I'll let you know what he thinks. I don't even know what substance to look at the Periodic Table for the info on, in this case!
     Hey Walter, are you out there? Can you help us with this one? Hedy, kick him into gear please, and send him this way. ;-) I have contacted Biosite Diagnostics, the test kit manufacturer, for help on this and will post any replies if they help.
     More posts later - I have to do some stuff right now, Jon.

Janet T B's March 2 reply to Jon's March 1, 2002 - Hi Jon, Thanks for taking a stab at my questions. I really appreciate it. Let me see if I can describe what I am feeling regarding "skips." When I was in the hospital, experiencing almost constant PVCs, my heart would go: boom-boom (pause) boom! Over and over and over. It drove me completely nuts. It straightened itself out for the cardio visit (it figures) but then went back to doing its weird dance a few days later, except not nearly as fervently. It went sort of like this: boom-boom (pause) boom (pause) boom (pause) boom, over and over, almost like it had the hiccups or something. It is now more calmed down although it still reverts to the weird dance at times. This is what I have meant by skips or palpitations. Are those the correct terms? Maybe they are just less fervent PVCs.
     Oh yeah, and I have "the rest of the story" on the sodium question I asked. The seizure meds I am on can lower blood sodium and I would be the first to admit that I've gotten a little zealous on the low-sodium diet. I have been staying under 1000mg daily, sometimes well under.
     Well, it seems I was a bit overzealous as the BMP (Basic Metabolic Panel) I had yesterday showed low sodium and chloride. My PCP thinks it is my diet and secondarily the seizure meds so I need to back off and actually go up to 2000mg, and the doc will repeat the BMP in a few weeks. I read about low sodium on your site and definitely don't want to go there.
     For the neurohormone tests, I was thinking of BNP, ANP, norepinephrine and stuff like that. I was curious about them, given their apparent prognostic value. I hope you are able to get some sleep. Insomnia is just miserable! Janet T. B.

Jon's March 2 reply to Janet T B's March 2, 2002 - Hi Janet, I'm not a doctor and am only going by what I read. The low blood sodium level is not directly tied to your dietary sodium intake. Eating a lot of sodium won't necessarily raise your blood sodium level and reducing your dietary sodium will not necessarily reduce your blood sodium. The systems in your body that regulate sodium and water balance are highly complex. Kidney function, aldosterone action, fluid volume, and natriuretic peptides are all more direct controllers of blood sodium than absorption through the gut. In a healthy and "average" adult, only 50mg (120mg is the highest figure for this that I have seen) of sodium intake daily is necessary for normal life. Extreme dietary salt reduction can have an effect on glucose tolerance, though. Talk to your doctor about the low blood sodium level since it can be a marker for needing more aggressive drug therapy for CHFers.
     I don't know what to tell you about your heart rhythm except that you really should get it thoroughly checked by your doctor. PVCs won't hurt you - they'll just drive you crazy; but arrhythmias should always be monitored until they are identified for sure, and then treated if need be.
     I don't believe that ANP and BNP are catecholamines, they are natriuetic peptides. Catecholamines relevant in CHF include epinephrine, norepinephrine, and possibly dopamine. See this part of the CHF page under the "neurohormone" subheading for an explanation of my previous response. I hope it helps, Jon.

Davida S' March 2 reply to Janet T B's March 1, 2002 - Hi Janet, In addition to taking your meds, the best thing that you can do that is within your control is to reduce your sodium intake. It can't prevent CHF if the heart is severely weakened but for a patient who is stable, a low sodium diet can make a big difference.

Mike, March 2, 2002 - Hi everyone, I just wanted to know about SSD lawyers. I have hired one here but after signing the fee agreement in my office with an aide (before I left my job), I have not been able to meet with anyone from his office since. My case was rejected the first time around and we are filing an appeal, but now I find that the lawyer does not do the actual presentation to the law judge. Is this normal or should I try to find someone else?
Jon's note: If it were me, I would find someone else ASAP

Joe, March 2, 2002 - Hi everyone, On March 27, I have an appointment set up by the SSD people with their doctor, I guess to evaluate me and see if I'm really disabled. Has anyone out there been through this? Can you share some advise to help me? I have a signed letter from the Medical Director of Heart Failure Clinic of Ochsner Heart Transplantation Center and Hospital. He states all of my conditions and says that in his opinion I meet criteria for permanent disability. What else can I tell them or bring with me? Thanks for any and all info. Let's all live long and prosper.

Elaine W B's March 2 reply to Sheryl's February 25, 2002 - I wanted to say thanks for the words of wisdom about attitude. I am newly diagnosed and all the numbers running around in my head only seem to keep me in a state of more confusion. I had a stroke 9/4/01, and have not shown any significant problems thus far other than having to really pace myself. I know that attitude does play a huge part in my psyche, and I feel that this is just one more step in a long battle I've been fighting to stay alive since 1975. I was thrilled to find Jon's web site and all the information and links to more, and most especially to have the opportunity to learn from those who are living with it!
     My cardiologist has me on a good med regime right now but it's still early in my treatment. The most difficult things for me right now are stress and salt. I'm getting good ideas and info on both at this site. Thanks again to one and all. I look forward to learning more.

Dick, March 2, 2002 - Hi, I received a heart transplant in September of 2000. I've recently been diagnosed with rheumatoid arthritis and fibromyalgia. I'm wondering if this could be a result of the transplant itself and the trauma & stress to my body, or a side effect from meds, or somethgin else? Has anyone else had this happen to them following heart transplant? Thanks, Dick.

Rob C, March 2, 2002 - Hello, In May I'll be moving to central Florida for job-related reasons. I'm concerned the extra heat in combination with meds might have adverse effects. I suspect the heat lowers blood pressure and also can dehydrate, which the meds I currently take also do. Does anyone have experience with this, and is it likely I'll need to adjust doses? Can anyone recommend a good PCP and cardiologist in the Sarasota/Bradenton area? Thanks.

Tracey C's March 4 reply to Ben B's March 2, 2002 - Hi Ben, Thanks for the input. The BNP was just thrown in by my GP as part of my quarterly blood work. I was just curious as to the meaning of the results. I hadn't heard much about it on this site and assumed it would become more of an issue as the test was administered more frequently to us. I do agree agree that how we feel should be of number one importance. At last check my numbers were still low normal and I've had many a good day. I actually took my first real trip to Vegas last weekend and everything went great, with no problems at all. Thanks again Ben, for your input, Tracey.

Rex Bradley's March 4 reply to Rob C's March 2, 2002 - Hi Rob, I went to Venice last summer for the first holiday after my MI. The doc said I could regulate my furosemide (diuretic) to compensate for the amount of water I'd be losing by sweating. It was early days so I found all my meds difficult then. The heat really made a difference and I was very dizzy sometimes, but by the end of the week I'd gotten the hang of it. I'm sure Florida will provide you with the same challenges but I hope you find a happy medium. By the end of the week I had managed it. All best wishes,

Rex Bradley's March 4 reply to Dorothy P's February 25, 2002 - Hi Dorothy, Thanks for the encouragement. I saw my cardio and he took me off the Lipitor right away. The pain has changed. It has become milder but spread a bit. I'm hopeful that my experience will be like yours and that I finish up pain free. I gave what seemed like a lot of blood for tests, including triglycerides and the CK test to determine what's going on, then he'll think about giving me another med to replace the Lipitor. I'm worried that he said the med he's thinking of as a replacement won't cross the muscle barrier but will be more likely to have side effects on my brain! Great choice! Does anyone have any experience of this medicational side effect? My blood pressure was 80 over 60! No wonder I get dizzy when I stand up sometimes. All best wishes.

Tom S' March 4 reply to Rob C's March 2, 2002 - Hi, The Sarasota-Bradenton area brings back memories for me not all of which are pleasant, but pleasant enough to say I wouldn't mind returning to the area even though it has experienced explosive growth since I lived and worked there.
     First of all, heat is relative to what you are planning on doing. If you are planning on doing a lot of outdoor activities then you should be aware that the Florida sun at certain times of the year is a definite killer. Spring starts in April and you have a couple of really wonderful months where you don't have to heat or air condition your house or car. I would say, out of the whole year you have about 7 to 8 months of that type weather. When it gets oppressively hot it is best to stay indoors. Your home, car, and every shopping center, church, government building, law and medical facility, and store that I know of in that area is air condtioned so you rarely have to be out of doors.
     Even the grass and other plants slow down their rate of growth in the heat of the summer so yard maintenance isn't what it is in the north. You can always get a yard service for that kind of thing anyway. Lido Beach and Anna Marie Island are generally cooler than the interior. You can drive 2 miles in from the Gulf and feel a 10° difference in temperature, so keep that in mind when you are shopping for a house.
     Traffic on local streets when the snowbirds are in town can be pretty bad, although I think the new interstate has relieved through traffic from highway 41. My wife's aunt lives there and is a mortgage banker, and says traffic in the winter months is still bad so plan your shopping excursions accordingly. Otherwise I think you will very much like the area and the climate. I know I am jealous of you already.

Jon, March 4, 2002 - Hi everyone, My credit card (just have one) is maxed out so much that my web host's bill bounced last month. I have a birthday right around the corner. If anyone wants to send me a birthday gift, I can promise it will be spent wisely. That's all I can say. E-mail me if you're interested and I'll send you an address that will get it to me. Jon.

Anita S, March 4, 2002 - Hello, I wanted to post a few tips on Social Security that Phil and I just discovered. Phil had filed for Social Security after he became disabled in 1994 and again in 1996. He was denied and decided to go on the Veteran's Pension since all of his care would be free and he wouldn't have to prove every so many years that he was still disabled.
     In 2000, he decided that he wanted to try again for Social Security so he would eventually be eligible for Medicare and he could get some health care somewhere besides the VA hospital. He went to a lawyer and the lawyer said that since he hadn't worked in 5 years he was not eligible to receive Social Security anymore.
     Phil did not pursue this anymore until about a year ago when he applied for Medicaid and some free help at our local hospital. They told him that he had to apply for Social Security even if he would be denied, so he could get the free help. Phil called the Social security office and then went to his appointment with them. They told him that the lawyer was wrong and that if he could prove that he was disabled in 1999, which is the last year he was elibible to get Social security, and that he is still disabled, that he could still draw some money from them.
     I guess what I am trying to say is that not all of the lawyers know what they are doing, so be careful. If Phil wouldn't have had to apply for Social Security to get his free help, then he would never have known that the lawyer was wrong. He was also told by the Social Security office to not let his appeals ever drop because eventually it would be too late to file. I hope this post is partially understandable and may help someone. :-) Bye and take care.

Monica's March 4 reply to Rob C's March 2, 2002 - Hi Rob, I live in north central Florida and am on a lot of heart meds. I do not see a difference. That's not to say you won't but the weather here is always unpredictable. One day it's 50 to 70, and the next it's in the 30s to 40s, so you just go with the flow.
     As for disability issues, I wwould find new lawyer also. Be aware that they take 25% of the first check. I just went through this. They also got expenses out of me - postage, travel, copies, phone calls, etc,... So be careful and read that contract first! From what I understand, in Florida a judge will not hear your case if you do not have legal rep. Good health to all, Monica.

David A's March 5 reply to Nancy S' March 1, 2002 - Hello Nancy, I too am a member of Kaiser Permanente in San Rafael, California, just north of San Francisco. My local cardiologist recommended my case to the Kaiser facility in San Jose, California. This is where the heart failure/heart transplant service is located for our region. The doctors in this clinic are Dr. Dana Weisshaar (Director) and Dr. Hemal Parekh. The office phone number is (408) 972-6428. These people are total professionals, yet personal, up to date on the latest in the field, and give you all the tests and medications you will need to be fully evaluated.

Dorothy Powell's March 5 reply to Joe's March 2, 2002 - Hi Joe, I jumped through hoops but finally was approved for disability. I had a stroke in July, 1995. I kept hoping that I would be able to function normally but finally had to give up. I can tell you that a positive attitude and patience served me well.
     My internal medicine doctor finally agreed that I should apply for disability and wrote a letter attesting to my memory loss and physical difficulties. The disability company required me to go to a psychiatrist for evaluation. The psyche doctor sent me to a doctor with credentials in psychology and neuropsychology who did extensive testing and finally determined that the stroke had truly affected my abilities. The final result was that my IQ was approximately 89. I hope you will find this helpful. Best wishes for good days, Dorothy Powell.

Jon, March 5, 2002 - Hi everyone, Biosite Diagnostics, the company who makes the most common BNP test kit, is going to make the unit of measure conversions, and let me know. I'll post them here when they arrive. They have never heard of fmol/mL being used either - only pg/mL. Jon.

Susan B's March 5 reply to Anita S' March 4, 2002 - Dear Anita, I am sorry that you learned the hard way that lawyers don't know everything. Law is a big subject and the law schools don't teach you how to practice law, they teach you how to think like a lawyer. After 3 years of kicking a student in the behind they send them out to take a bar. After passing the bar, the new lawyer is sent out to the world to earn a living. all of this without even knowing how to file a pleading or the way to the courthouse.
     Then there are the unrealistic expectations of the new lawyer and the public. I am a lawyer, but I don't know anything about disability law. I do know how to pick up the phone and call someone to refer the client too, but that was not learned overnight either. When my husband got CHF, I picked up the phone and called my friends. I have a good friend who does disability law and that is all the law he does. When I was hurt in a worker's comp case I hired a friend, who told me she knew how to do it, but she did not.
     The buyer of legal services must ask questions. Disablity law is not the type of law you can dabble in, but I know lawyers who do. Ask how many cases they have handled and their success rate. Are they going to return phone calls or is their staff? Have they done appeals? According to my friend, many good cases must be appealed. Therefore, will the lawyer handle that or will you have to hire someone else? Please don't just hire the family lawyer to do everything, Susan.

Darlene, March 5, 2002 - Hello everyone, I have posted only one time before but read the site a lot. Once again I would like to say that this has been a great help to me on learning as much as I can about CHF. There is so much that I certainly need to know and learn. What a wonderful way to help other people, Jon!
     I would like to add that with having a massive heart attack in 1998 at the age of 44, followed by severe CHF, and now diagnosed with diabetes this year, that I am doing considerably well. My doctor says I have "proven them wrong." There are days when I feel so good and then those bad days come, but I am a very stubborn, strong-minded woman and I will not be beaten. I thank and pray to the good Lord that I am able to wake up and see my children and and our grandchild every day. Just to be able to be involved with their lives and laugh right along with them makes me thankful. I have a lot of faith and I am in good hands. Thanks for listening.
     Where on the site is the blood test description? I read it once and am not sure where I found it. Thanks again.
Jon's note: It's in the Tests section here

Scott Brown's March 5 reply to Janet T B's March 1, 2002 - Hi Janet, I will take a stab at a few of your questions. The less sodium you can consume, the better for your CHF symptoms, mainly breathing and edema. The daily weigh-in will confirm that your low-sodium diet is really working. Controlling the liquid intake is equally as important. I have also found that once I start taking on water, I am more thirsty than normal. I am not sure of an explanation for that.
     I would not be surprised if you have breathing problems while you are starting with Coreg. Give your meds a chance. It has been 7 months since I started taking Coreg and I am only now starting to feel a lot better. It is not a straight line to improvement either - there are plenty of dips along the way. I'm not sure what causes this. Best of health to you, Janet! Scott B.

Cathy, March 6, 2002 - Hi, I've just started prophylactic antibiotics for some dental work I am having, and have also just recently switched from Monopril to accupril. I've become extremely short of breath, especially at night, and am wondering if it could be the change in ACE inhibitors. Has anyone else had anything similar? Your input would be appreciated, Cat.

Joseph P, March 6, 2002 - Hi Jon, I have a friend who tells me things that he won't tell his wife about his physical condition. He doesn't want her to worry about him. He has had problems in the past with his heart and now he has discovered that he has diabetes. He also tells me that he is short of breath. Is there any information in Jon's Place so I can copy it and give it to him? He doesn't have a computer. Thanks, Joseph P. God bless, Joseph P.

Jon's March 6 reply to Joseph P's March 6, 2002 - Hi Joseph, You can print out and give away any of my materials as long as there's no charge and no else takes credit for my work. Don't be offended, please! I know you wouldn't, but I have to make those conditions whenever I actually give permission to anyone to use my stuff or someone down the road could point to my less strict permissions and steal my site info and says it's his. Thus the conditions. ;-) As to what to give him, I don't know. I have found that The Manual seems to be by far the most helpful, in general. Jon.

Bill B, March 6, 2002 - Hi All, I went to my PCP's office Friday for some accelerating angina. I have it all the time but Friday it got really bad and I was very dizzy and nauseated too. Next thing I know I am in an ambulance headed for the hospital. My BP was 148/98 and when the paramedic gave me a spray of nitro it dropped to 71/48 immediately. That scared him a little and me a little too. I was thinking MI for sure. I have low BP so I can't use nitro at home anymore to control my angina.
     On release from the hospital 4 days later, the diagnosis was unstable angina and I was told to follow up with my cardio doc. I feel like I am starting all over again with the same old thing. Right now I have my usual angina and am resting and waiting for tomorrow to see my doc. Are there any meds to control angina besides nitro? Does anyone else have these type of episodes where you feel like you are having an MI and get told it's unstable angina? Does it ever get any better?
     A funny thing happened to me while I was in the hospital. SSD denied my full claim stating it was their opinion that I could return to work at my previous job as a janitor - I was a police officer. <g> I love that personal touch they have when it comes to the people that pay their salary. Ya just gotta laugh about it - it's too stupid not to. God bless, Bill B.

Fred B, March 7, 2002 - Hi, I am a 53 year old male, 5'11" tall and weighing 170 lbs. I have great blood pressure except that lately my heart is beating in the upper 80s and lower 90s. I am a carpet cleaner and after work the other day it was 116 beats per minute. It is 100 right now. I have an appointment with a heart doctor tomorrow but would like to get some info or feedback now, as I am worried about this. Anyone? Thanks, Fred.

Jon, March 7, 2002 - Hi everyone, I guess it's my turn to vent a little. My EF has risen over the years from 13% to almost 50% and my Vo2max from 13.5 to 20. Starting around last October, I started feeling pretty much human for the first time in about 8 years. Well, it sure was nice. Three or four days ago my CHF came back with a vengeance and I dropped into class 3 and my insomnia is back full force. I am only sleeping (at all) every other night. I just wanted to say it out loud, so to speak. Who else is going to understand? Thanks for listening - no replies requested. Jon.

Brandy, March 8, 2002 - Hi everyone, It is me: PPCMer Brandy. I just got word that my uncle has a massive blockage in the main artery leading to the heart and that one of his valves is enlarged. They are doing a double bypass surgery and valve replacement next week. They gave him time to get with his asthma doctor to get that straightened out since he will be on a ventilator after the surgery. I was wondering if anyone has heard of doing both of those surgeries at once and could comment on it. Thanks, Brandy.

Jon's March 8 reply to Brandy's March 8, 2002 - Hi Brandy, I'm no surgeon and have no personal heart surgery experience so I hope others also reply. From what I have read, whenever heart surgery is planned, if a heart valve needs repair or replacement it is preferred to do it it "all at once." One reason is to help prevent heart failure after the surgery while the heart recovers. Valve dysfunction is a heavy contributor to CHF, so to repair or prevent it is always a good idea. See the Surgeries pages for some valve info as well. Jon.

Tony's March 8 reply to Fred B's March 7, 2002 - Hi Fred, My heart rate, beating irregularity, and blood pressure are all affected by chemicals and the materials, dyes and dirt that are in carpets. Thus we have no carpets where I live, and we only use a few "safe" chemicals for cleaning. In my opinion, many health and heart related reactions are triggered or made worse when multiple irritants are encountered in the same time frame. Thus, finding the exact offenders is extremely difficult and sometimes not possible. At least, this is what I have found out about my own health and heart disease, and with that knowledge I have benefited significantly. On the other hand, if you watch The Chair on television, you can watch people's heart rates often go from 90 to 144. Good luck finding out what is making your heart speed up, Tony.

Cristina L's March 8 reply to Jon's March 7, 2002 - Hi Jon, I'm sorry to hear you are not feeling well. Are you sure you're not catching the flu or something? Have you been to the doctor? How about your sodium intake? Feel better.

Jon's March 8 reply to Cristina L's March 8, 2002 - Hi Cristina, Naw, for the first time in months, I seem to be free of flu and colds. Ain't that a kick!? <g> I do already have a CHF doc appointment for early April. My CHF doc had back surgery and so was out of the office quite awhile. Luckily, we e-mail each other a lot because he helps me sooo much with the web site.
     I think a lot of this was triggered by a change in meds at my last CHF checkup. I have since (after consultation with my CHF doc) reduced that med dose back to where it was before. However, previous personal experience shows that getting back to my previous plateau, if it happens, will take as long as a year. That's a real bummer, but at least after 8 CHF years, I know that ups and downs can be handled and that life goes on, sometimes even better than before! :-) Until then, I'll just keep focusing on others so I don't weigh myself down for no good reason. Jon.

Pat Y's March 8 reply to Jon's March 7, 2002 - Hi Jon, Just a quick comment. I seem to always be about 6 months behind you. As your EF improved, mine followed. You were diagnosed about 6 months before me. My body has been feeling different recently and I have been trying to figure out why. I just hope that I don't follow you with CHF returning with a vengeance. It has been "fascinating" to follow your ups and downs and wonder if my body will continue do the same.

Pat M, March 8, 2002 - Hi folks, Along with so many others lately I have suddenly found myself on the downside of CHF, with a rapid heart beat without exertion as well as SOB - without exertion is what baffles me. I can be sitting watching TV or reading; it wakes me in the night. It is truly frustrating when things have been going so well for awhile. I continue to do the things I am supposed to and still it will flare up.
     I also have restrictive pulmonary disease. Does it mean that is getting worse? I was going to try to go 3 months without seeing my doctor but it has only been 3 weeks. God bless you all. Here is to better days to come! Does anyone have any thoughts or ideas about this?

Maggie, March 8, 2002 - Hi everyone, I just wanted to share this experience with you. I have had my ICD implanted since September l5, l999. It has never gone off and I felt at this point it probably wouldn't. Well, I was wrong. Last Tuesday evening I was talking on the phone to a friend and felt my heart start to race so I took a deep breath since this has stopped it in the past. At the same time I took the breath I got zapped. It was a real surprise and felt like a severe karate kick in the chest. I felt shaky and weak, and apprehensive that there might be a second one so my daughter came over and stayed with me.
     It was checked the next day, and I was told that it had done its job very well. My heart rate was 200 when it zapped me and I received 24 joules. I am really thankful for this device. I realize that it saved my life. I hope you are having decent weather, since Minnesota is having its winter in March.

Cindy, March 8, 2002 - Hi, I had a heart cath. This is what I signed permission for. It turns out that I also had a left ventriculogram. Isn't that a MUGA? Is it normal to have a procedure that you are not informed about? What figures did they get from that MUGA? Is there a site that shows the MUGA figures? Surely this is a test that has figures. I can't seem to get hold of them. Does anyone know where I can find them? Thanks again.

Scott Brown's March 8 reply to Jon's March 7, 2002 - Hi Jon, I hope you will forgive me replying to your post. I know I speak for everyone when we hope you compensate quickly! We all know how this can get you down. Do you know how EF and other clinical indicators can improve and you can go into failure so easily? It is obviously quite discouraging for the people who see improvements in their results but what does it really mean?
     My most recent MUGA shows an EF of 25% and a right ventricular EF of 30%. I understand from previous discussions that EF is a ratio, so an enlarged heart twice as big with an EF of half normal could pump the same amount of blood in one stroke as a healthy heart. Does anyone know if low LV enlargement always eventually causes RV damage? It's just strange that you could continually improve and then just decompensate like that. Thanks, Scott Brown.

Jon's March 8 reply to Scott Brown's March 8, 2002 - Hi Scott, Actually, this happened to me once before, maybe 4 years ago. My cardiac output dropped like a stone, so much so that my CHF doc strongly recommended heart transplant evalution. I said no and we raised my Vasotec to 40mg BID. That dropped my blood pressure so much they coudn't get a reading on it but after a few months my EF came back up and I slowly recovered all that I had lost and more.
     For what it's worth, RVEF is always lower than LVEF. ;-) It's easy to forget that heart failure is not really understood by doctors, researchers, scientists or anybody else. We know a lot about changes in some bodily systems when the heart weakens, what can cause the heart to weaken and so on, but actually pinpointing how and why heart failure does what it does when it does it to our bodies and lives is pretty largely unknown.
     When you ask about the long-term effect of heart enlargement, you leave it open-ended. Heart enlargement is part of heart failure but can happen in other conditions as well. When it occurs in CHF, it can often be reversed to a large degree. Obviously that depends on the amount of damage sustained to the heart muscle before diagnosis. If you have had CHF awhile and your heart is still enlarged, you should talk to your CHF doctor about more aggressive treatment to see if the remodeling can be further reversed. As far as I know, an enlarged left ventricle does not absolutely mean right-sided damage down the road. However, left-sided failure can lead to right-sided failure, thus the need to talk to your doc.
     In my case, I do think changing meds dose hurt rather than helped. It happens. Jon.

Rick M, March 8, 2002 - Hi, This is how the VA cuts your prescription drug cost in half: They send you a pill splitter and when your doctor calls for 20mg of a drug, they send you 45 pills of 40 mg and tell you to cut them in half and get 90 days worth of 20 mg pills. Now, thanks to my recent research, you can make over $100 an hour at home by buying the larger size and cutting them in half!
     Log on to and check out Coreg: 60 tablets at 12.5mg cost $90.67 while 90 tablets at 25mg also cost $90.67. Cut your cost in half by buying the 25mg pills! Try Zocor: 90 tablets at 10mg cost $189.01 while 90 tablets at 20mg are $327.86 and 90 tablets at 40mg are also $327.86. I recently priced furosemide and found that 100 tablets at 40mg are $8 but 200 tablets are only $10. Now when you log on and get your e-mail promising you the secrets of making big money at home, think of a career in pill-splitting, where you can make over $100 an hour. <g>

Davida S' March 9 reply to Rick M's March 8, 2002 - Hi Rick, That's funny. I was shocked to see your post; I thought you were gonna suggest splitting the pills and selling half of your prescription. I really laughed hard as I kept reading. Thank you for the money making tip.

Nancy S' March 9 reply to Maggie's March 8, 2002 - Hi Maggie, I was glad to read your post and even though I'm sorry that you got zapped, I'm really happy to know what to expect if my ICD zaps me. Nobody has told me what to expect so I have been anxious about it.
     Today I have worked outside trimming shrubbery and cooked a nice dinner, made homemade rolls and done laundry. That's a lot for me and usually when I am up moving around, my blood pressure gets up to near-normal numbers. This time, after all that, I sat down and checked it and it was 100/49. It has been as low as 88/38. I seemed to go up and stay around 105/50-60 after Coreg and Aldactone (spironolactone) were added and having the ICD implanted, but now it seems to be going down again.
     I can only tolerate 5mg of Zestril and 6.25mg of Coreg due to dropping BP. Does anyone else have this problem and do you also stay tired? I have 2 or 3 good days and then I'm worn out. Take care all and God bless, Nancy.

Joseph P's March 11 reply to Nancy S' March 9, 2002 - Hi Nancy, I have an ICD too and so far it has not zapped me. It was implanted in August of 2001. Being tired is part of my problem, but I have CHF. I also have a lot of other things wrong with me, too numerous to mention. In time you will learn to dispense your energy a little at a time, Joseph P.

Joe S, March 11, 2002 - Hi, Well, after 58 years of begging and pleading to get my aortic valve replaced, I finally had it done. So far so good, but the amazing great feeling hasn't come about yet. Maybe the discomfort and pain are pushing the great feeling away. I went in Tuesday and had the surgery at 5:00 AM Wednesday. It only lasted about 3 hours but I didn't regain any true consciousness until very late Thursday.
     Late Friday, just when things were looking up, they put an alcoholic in the bed next to me. He pooped the bed at least 3 times plus a dozen other things including having the DTs. The male nurse was great but he couldn't do it all so guess who jumped in? On Sunday I gave up and told them I wanted to go home. So far, so good. I am feeling better and our dear Lord did guide the surgeon's hand. Thank you for your prayers.
     Hey Rick, where have you been? I get worried when old-timers disappear. Joe S.

Julie G, March 11, 2002 - Hi everyone, I hope all are well. Jon, I hope you are doing better. I just wanted to let everyone know I received my SSD award today, or at least the notifacation of it. They approved me on the 26th of February and deposited the check in the bank 3/1/02. Now I can pay for my meds and don't have to ask for samples all the time, and I won't feel like I'm taking something that someone else needs more than I do. It took me one year exactly to be approved for SSD so I consider myself very lucky that it didn't take a lot longer. May God hold all of you in His palm, Julie.

Rick M's March 11 reply to Joe S' March 11, 2002 - Hi, Thanks for the kind words, Joe. I think a lot of the old timers tend to let the newer folks answer the comments and questions which come up here regularly. It's always interesting to observe a "newly minted" CHF sufferer struggle with the question of, "How did I get CHF?".
     The media have conditioned us to search for someone or something to blame for everything that happens to us, and the newbies want to know "Why me?", almost before they ask, "Now that I've got it, what do I do?". I keep reminding myself that I've never been 77 years old before so I'd better pay attention this time, as I might not get a second chance. There are some old CHFers here, folks. It's just that we like to lurk in the shadows and observe (most of the time).

John Len's March 11 reply to Rick M's March 8, 2002 - Hi Rick, I have had my trusty pill splitter for some years now, but how do I split my insulin? <g>

John Len's March 11 reply to Julie G's March 11, 2002 - Hi Julie, I've been receiving an SSA check for over 10 years and find that I have to beg, using the manufacturers' free drug programs to get my medications. I sure hope the checks are bigger nowadays. ;-) John.

Karen F, March 11, 2002 - Hi, I just wanted to let everyone know that I had the appointment today to file for SSDI and SSD. Please pray for me, or at least cross your fingers. My company closed my location before my latest bout of CHF, so right now I have zero income. I applied for SSDI on my CHF specialist's advice. He absolutely does not want me working in any capacity anymore. I know he is not the one who makes the award decision, though. I also know that getting approved for SSDI can be a long drawn-out process, but financially I am on the brink right now. So please hold a good thought for me. I am in Pennsylvania, Karen F.

Jon, March 13, 2002 - Hi everyone, I just took a day off yesterday since my daughter is on spring break here at home, is all. ;-) Jon.

Shelby H, March 13, 2002 - Hello everyone, My name is Shelby. I'm 28 years old and have been married for 2 1/2 months. Last week I was diagnosed with idiopathic DCM and CHF. Five weeks ago I felt fine, then started having fatigue, shortness of breath and chest pain.
     After a misdiagnosis of bronchitis, I was eventually referred to a cardiologist. The cardiologist said not to worry and that I had none of the risk factors for heart disease, that I'm young and healthy, etc,..., but he wanted to do an echo just to see what was going on with my heart. Twenty minutes later he came in and said, "I'm afraid I have some bad news." He sent me up to Stanford where I was admitted to the hospital and have been seeing the heart failure specialists there.
     Now I'm taking a handful of meds each day: Coreg, Zestril, Lasix, baby aspirin, digoxin, and a potassium supplement. I just wanted to introduce myself and ask if anyone had any tips for dealing with the shock, denial, disbelief, anger, frustration, and depression that comes with such a sudden diagnosis. Thanks in advance.

Craig A's March 13 reply to Rick M's March 11, 2002 - Hi folks, Yup Rick, I guess you'd call me a newbie since I've only been diagnosed with CHF and DCM since the February 5, 2002. Funny that - my wife's maiden name is Newby! Anyway, I really notice how different things are in the USA. I'm here on the Gold Coast of Australia. Particularly your meds and the cost of them. I am still trying to get used to the actual meds and all their side effects. I am currently not employed and am therefore on a health care card, which allows us to gets meds way cheaper. I am on 5 meds, all of which cost $1.50 US. Two things I found myself not asking so far: how did it happen, and why. I guess I was more interested in what to do now and and what to expect.

Norma's March 13 reply to Rick M's March 11, 2002 - Hello all, I was really pleased to see someone of the senior persuasion writing to the forum. I had begun to feel I was the only 70 year old still in survival mode and it encouraged me no end to hear that you are 77 and still retain your sense of humour, after all the gloomy faces I regularly encounter at the cardiologist's office. I had CHF at 65 and no recurrence, am feeling better each day, though my EF is still at 25%. My mother is 100 years old in August and although I don't hope to emulate that, I think a positive attitude goes a long way, plus a lot of common sense. Is anyone else out there in our age group? Norma W.

Pam, March 13, 2002 - Hi, I hope someone can reply. I am 28 years old, with cardiomyopothy and heart failure. I was diagnosed in May of 2001. I have PVCs. I used to have it a lot and then it completely went away for a few weeks. Now it is back again, and sometimes it hurts. Does anyone experience this?

Brenda, March 13, 2002 - Hi to you all, After reading your posts about getting Social Security and the costs of meds, it makes me realise how fortunate I am to live in New Zealand. I pay $21 to see my general practioner and any visit to the hospital to see the cardiologist are free. All hospital tests are free and I pay a small amount for my medications which can be as low as $2 per item per month. For anyone needing a sickness or invalid's allowance it is a person's right, which is about $160 per week plus up to $40 a week extra expenses. I am really amazed at the difficulties people go through in the USA to get help.
     Life still can be very difficult for people to survive but at least we have a minium paid by the state. Private health insurance is being more widely used here now but I am unable to get any. I am grateful that I do not need to have the worry about money on top of all the medical things. I hope that everyone who is applying for Social Security is able to get it. New Zealand has a lot of problems with funding for our hospitals and waiting lists can be up to 6 months or a year or more for non-urgent surgery but all in all, at least there is still a public health system there when it is needed.

Jon's March 13 reply to Brenda's March 13, 2002 - Hi Brenda, I think a lot of non-US citizens have a very skewed idea of medical treatment in the USA. With no health insurance, no job, no money, and no home to call my own, I could walk into any county hospital here and get fully treated. You just don't hear from people in that situation at an online message board much because they don't usually have an Internet connection and computer.
     Myself, I get half the amount of my salary when I worked full-time, from SSD; I pay only $20 for a 90-day supply of brand-name meds, and $5 for a 90-day supply of generic meds - that is through my Union medical pension/prescription plan. All my ER visits are fully paid for and my doctor visits are fully paid for - that's from combined Medicare (comes with SSD at 2 years), my Union health insurance and my wife's health insurance (she works). Inpatient hospital treatment is paid for at 80% to 100% with my current coverage as well, regardless of whether it is urgent or elective.
     The thing is that almost everyone here has a different coverage in some respect so you can't point to 3 or 4 people and say they are representative of US medical care. As you can see from my situation, it can be a very sweet deal. Now, this can change for me at any time, but that's life. Others here have better deals - some much better, and others have worse deals - some much worse.
     Our system encourages innovations in therapy of all kinds because the innovator makes a lot of money. High costs are a huge pain here but the very structure that causes those prices is the structure that produces 90% of the world's medical breakthroughs. Those therapies are then usually exported to other countries, whose governments try to provide them at low cost to their citizens.
     Unfortunately, that often fails long-term as it is doing in Britain now, not to mention it often requires caps on what a company can charge for its product in another country. That in turn reduces incentives to create or even sell groundbreaking new therapies in those countries. It also causes prices in more-free-market countries like the USA to rise simply because those companies are getting screwed on the prices they can charge in countries with government restrictions on the markets there. In effect, often our high prices stem partly from other countries' artificially low prices.
     Regarding difficulties getting SSD, that comes from our foolishly turning over what should be a very easily administered system to our government. As usual, government refuses to use any common sense here as well, and tries to ignore the very medical professionals that are supposed to set the qualifying standards. Let's face it, governments only do one thing well, and that is field an army. The medical profession here in the USA has not helped any, doing a very poor job of setting clear standards for anything. It's a well proven fact that doctors can't even follow their own guidelines, much less set them for others.
     This is all obviously over-simplified but the underlying points are pretty easily seen. I suppose it's like the old proverb says: "You can't have it all." <g> Everybody wins in some respects and everybody loses in others. Jon.

Tracey C, March 13, 2002 - Hi everyone, I finally had surgery yesterday to remove the masses on my ovaries. All were benign. I did however come home 12 pounds heavier than that morning and am feeling very puffy. They apparently went through 2 bags of saline solution. I don't normally take Lasix but I think this calls for it. Has anyone else experienced such weight gain after surgery?

Jon's March 13 reply to Tracey C's March 13, 2002 - Hi Tracey, I'm glad to hear all were benign. Those saline IVs will make you swell up like a balloon! Ask Bill Drummond. Dr. Marc Silver has confirmed this, by the way. Jon.

Brian M, March 14, 2002 - Hi, I'd just like to say hello to everyone. I have not been online for about a year now. A relative just gave me this computer last week. Jon, it's great to see you're still here. God bless everyone.

Cristina L's March 14 reply to Pam's March 13, 2002 - Hi, I think we've all suffered at some point from PVCs. A variety of things could be causing them. Even if your potassium level is low it can happen; it happened to me. You need to confirm that they are not dangerous extra beats. Mine were not dangerous but I was getting so many after my open heart surgery that they put me on Cordarone. Of course, like any other medicine, it works great, but the side effects can really stink. Keep me updated, Cristina Lisa - age 38 with CHF, PPCM, mitral valve repair.

Jack D, March 14, 2002 - Hi, I read an article about using Relaxin for hypertropic cardiomyopathy, but I lost the link. Ask your doctor about it. It's recombinant human relaxin which is produced during pregnancy so that normally stiff collagen fibers become elastic.

Nancy B, March 14, 2002 - Hi, I have had idiopathic CHF for 5 years and have been on Coreg and Cozaar, plus 200mg of CoQ10. I cannot tolerate diuretics, so I just watch the salt.
     I've also had problems with other beta-blockers and other meds, so I have refused to take them. My EF is now 35% and was 24% when diagnosed. I think I've been in a state of denial ever since I was diagnosed, because I refuse to let this thing change my life style. I still walk 2 miles a day and force myself to do things I'd rather not do, if they're active things.
     What I'd like to know is, does anyone know if heart meds cause damage to ligaments or tendons? I saw a passing reference to this in a magazine, with no details. Six weeks ago I fell while walking and tore some ligaments in my ankle. Since I read this I wondered if this could have been caused by meds. I can't find another reference to this anywhere.

Davida S, March 14, 2002 - Hello everyone, Has anyone had any bad experiences with Prilosec, such as tiredness or angina-like symptoms? The reports on the drug indicate that less than 1% of patients experience this. All feed back would be helpful. I am wondering how it reacts with cardiovascular drugs.

LeeAnn D, March 14, 2002 - Hi, I'm 41 and have had CHF for 4 years now. I improved to an EF of 50 but after my doctor tried taking me off Coreg, it dropped to a little below 40% and has been there for a year. My question is about disability.
     I initially had an EF of between 8 and 12% when I qualified for Disability. Now that I'm better, they are reviewing my case. I have 3 kids, aged 4, 6 and 8. They pretty much use up all my energy! After I get them ready for school and send them off, I go back to bed. I really feel I still need SSD because if I work, which I would have to do for us to make our mortgage, I would be so wiped out I couldn't even make dinner.
     I worked in the kids' "Holiday House" at their school this year for only 5 hours a day for a week and was so wiped out I was in bed every evening by 5:00 PM. SSA now wants me to get a physical by one of their doctors and has made the appointment for me. This doctor is not even a cardiologist. Do I have to go?
     Before being diagnosed, I saw MDs for 3 years while in heart failure, and was told it was bronchitis or hormones - while I was slowly dying. It doesn't make any sense to me to see a "family physician" for heart failure. Does anyone have any experience with this phase of disability?

Walter K's March 15 reply to Norma's March 13, 2002 - Hi Norma, You asked about the 70-something age group here. I am 72 and was diagnosed with CHF about 2 years ago. My EF has been about 30 since diagnosis but my heart size has shrunk from 71 to 63 (55 is normal) in the last year or so, which I am told is really good news. My main limitation is not the CHF, which of course is debilitating, but my legs, which are very weak due to a nerve problem. Even so we manage to get around and have just returned from a trip to Death Valley - the one in California, not the grim reaper. Compared to others here I can't complain, compared to my friends in the same age group I could, but won't. <g> Walter K.

Tom S' March 15 reply to LeeAnn D's March 14, 2002 - Hi, I have been through 3 SSD reviews in 6 years and all they involved was filling out a form and telling them how I felt about my over all health. Each time I recieved a notice that I would continue on SSD. The EF number is deceptive. I was in the 15 range and am now in the 20 to 25 after having been as high as 30.

Jon, March 15, 2002 - Hi everyone, Regarding SSD reviews, well, I have been re-linking, re-HTMLing and re-CSSing all the Archive pages for a move to the new domain. Last night, the page I did included a long thread about SSD reviews. See this page: Don't forget that you can use the Find feature of your browser. When a page loads, just go to "Edit" then "Find" or press "Ctrl+f" on your keyboard. Type in the word you want to find, and it will take you to that word on the web page. Jon.

Maggie's March 15 reply to Norma's March 13, 2002 - Hi, I am 70 years old also. I've had ICDM and CHF for about 10 years now. Lately it's been getting worse. I cannot tolerate Coreg and the doctors are talking about repairing my mitral valve. I am also in a medical study. The first years I did quite well and have hopes that this repair will help since my doctors think it will. I'm glad to hear someone else is my age also. We are expecting 8 more inches of snow by morning. I guess I'll just stay in and hibernate this weekend, Maggie.

Herbert L's March 15 reply to Shelby's March 13, 2002 - Hi, and welcome to the club. I think most of us have been there, done that, but you found the right place on the Net to come to, and early into this CHF stuff at that. You're lucky about that. Now that you feel like someone/something hit you below the belt, do something about it - like get better. Most all of us have. Just follow the advice you're given and you'll feel much, much better. Again, welcome.

Ruthie A's March 15 reply to Davida S' March 14, 2002 - Hi Davida, I have been using Prilosec for over 2 years now for GERD in addition to a diuretic, a beta-blocker, an ARB, baby aspirin, Glucophage, Neurontin, Premarin, an NSAID for my arthritis, plus an occasional painkiller. None of these meds have negatively interacted with the Prilosec in me, nor have I had any side effects from mixing it with the other meds.
     Just because you seem to be experiencing a side effect that less than 1% of patients experience does not mean that you are imagining things. I have gained the reputation of being a queer duck by some of my doctors because I get a lot of the rare side effects from various meds. Don't sell yourself short because you are in the minority. Talk with your doctor and make him listen to you. There usually are other options you can try, Ruthie A.

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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