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

Myrtle C 5-1     episodes of fatigue and brain fog
 
Carlos 5-1     have some questions
 
Jon's 5-1 reply to Carlos' 5-1     angioplasties, stents and ICDs
 
Katherine H's 5-1 reply to Jim R's 4-29     resynchronization experience
 
Linda Oline 5-1     seek Coumadin experiences
 
Blanche's 5-1 reply to Jesse's 4-29     condolences
 
Tom Campbell 5-1     thanks for information
 
Lane's 5-1 reply to Jesse's 4-29     condolences & more
 
Henry T's 5-1     still here!
 
Louise D's 5-1 reply to Ruthie A's 4-28     more info
 
John's 5-1 reply to Roger's 4-29     different vitamin forms
 
Ottye's 5-1 reply to Jesse's 4-29     condolences
 
George H 5-1     getting fit and staying fit
 
Roberta F's 5-1 reply to Jesse's 4-29     condolences
 
Roberta F's 5-1 reply to James' 4-28     thanks for the advice
 
Margaret D's 5-1 reply to Myrtle C's 5-1     oxygen, sleep, and brain fog
 
Jim R's 5-1 reply to Katherine H's 5-1     fine tuning CRT pacemakers
 
Valerie R's 5-1 reply to Tom Campbell's 5-1     CRT pacemaker question
 
Karen 5-1     how should I handle this?
 
Catherine L 5-3     how much sodium should I eat?
 
Pamie R 5-3     seek spironolactone experiences
 
Katherine H's 5-3 reply to Jon's 5-1     optimizing resynchronization therapy
 
Katherine H's 5-3 reply to Jim R's 5-1     CRT pacemaker experience
 
James' 5-3 reply to Louise D's 5-1     sources of potassium
 
Jon 5-3     chat times
 
James' 5-3 reply to Tom Campbell's 5-1     managing heart failure
 
Karen K's 5-3 reply to Pamie R's 5-3     spironolactone experience
 
Scott Brown's 5-3 reply to Catherine's 5-3     sodium intake
 
Paul D's 5-3 reply to Catherine's 5-3     sodium intake
 
Roger's 5-3 reply to Catherine's 5-3     sodium intake
 
Jon's 5-3 reply to Catherine's 5-3     sodium intake
 
Roger's 5-3 reply to Pamie R's 5-3     spironolactone experience
 
Tom S' 5-3 reply to Pamie R's 5-3     spironolactone experience
 
David Wilson's 5-3 reply to Pamie R's 5-3     spironolactone experience
 
Kathy H 5-3     seek info on lithium use
 
Jack D's 5-3 reply to Pamie R's 5-3     spironolactone experience
 
Louise D's 5-3 reply to Pamie R's 5-3     spironolactone experience
 
Scott Brown 5-3     reaction to dye - have questions
 
Jon 5-5     couch day yesterday, quote for today
 
Tom S' 5-5 reply to Jon's 5-3     potassium chloride amounts
 
Jon's 5-5 reply to Tom S' 5-5     potassium chloride
 
Pamie R 5-5     does anyone have PBC?
 
Louise D 5-5     what do I do about this?
 
James 5-5     daily sodium intake
 
Pat's 5-5 reply to Scott's 5-3     reactions to contrast dye
 
Marly's 5-5 reply to James' 5-3     biventricular pacing
 
Lori K's 5-5 reply to Catherine's 5-3     daily sodium intake
 
Alexandra 5-5     seek Coreg experiences
 
Ruthie A's 5-6 reply to Louise D's 5-5     two suggestions
 
Jack D's 5-6 reply to Louise D's 5-5     doctors, diabetes, and more
 
Myrtle C 5-6     new procedure sounds promising
 
Jon 5-7     quote for the day
 
Sheryl C 5-7     enjoyed chat last night & more
 
Catherine L 5-7     thanks, coping, any other advice?
 
Monica 5-7     seek sleep apnea experiences
 
Evelyn 5-7     update - always stay hopeful
 
Jon 5-8     quote, medical study about depression
 
Louise D 5-8     doctor visit, tests & more
 
Jon's 5-8 reply to Louise D's 5-8     doctors and health care
 
Jack D's 5-8 reply to Jon's 5-7     about those quotes
 
Carla's 5-8 reply to Catherine's 5-7     cheating on sodium intake
 
Jon's 5-8 reply to Carla's 5-8     cheating on sodium intake
 
Roger's 5-8 reply to Monica's 5-7     sleep apnea experience
 
Jim T 5-8     I have been healed
 
Wilda 5-8     seek LVAD experiences
 
Ottye's 5-10 reply to Jim T's 5-8     that's wonderful news
 
Vee's 5-10 reply to Jon's 5-8     liked the essays
 
Roger G's 5-10 reply to Jon's 5-8     depression, coping with CHF
 
Roger G's 5-10 reply to Louise D's 5-8     dealing with doctors
 
Roger's 5-10 reply to Jim T's 5-8     excellent news
 
Roger's 5-10 reply to Carla's 5-8     splurging on diet
 
Jon 5-10     quote for the day
 
Lori K's 5-10 reply to Catherine L's 5-7     sodium intake effects differ
 
Sharon's 5-10 reply to Carla's 5-8     relaxing with diet & CHF
 
Brad 5-10     I feel great but am terrified
 
Myrtle C's 5-10 reply to Jack D's 5-8     mellow is good
 
Jon 5-11     Medicare links
 
Maggie R 5-11     seek travel advice
 
Scott Brown's 5-11 reply to Brad's 5-10     meds, exercising
 
Elizabeth K's 5-11 reply to Brad's 5-10     meds, exercising
 
Lori K's 5-11 reply to Brad's 5-10     meds, exercising
 
Roger's 5-11 reply to Sharon's 5-10     eating low sodium
 
Jeanene P 5-11     I don't understand this disease
 
Catherine L's 5-11 reply to Giorg's 3-11     cholesterol/statin/CoQ10 questions
 
Dave T 5-11     diabetes & beta-blocker question
 
Jon's 5-11 reply to Dave T's 5-11     diabetes & beta-blockers
 
Jon 5-12     quote for the day
 
Jack D's 5-12 reply to Jon's 5-11     quote for the day
 
Jacky's 5-12 reply to Maggie R's 5-11     making travel arrangements
 
Ruthie A's 5-12 reply to Jeanene P's 5-11     coping with heart failure
 
Ruthie A 5-12     I enjoyed Monday's chat session
 
Roger's 5-12 reply to Dave T's 5-11     blood sugar and Coreg experience
 
Roger 5-12     low sodium salad dressings
 
Tom K 5-12     seek ACE inhibitor experiences
 
Elizabeth's 5-12 reply to Dave T's 5-11     blood sugar and Coreg experience
 
Catherine L 5-12     seek C-reactive protein test info
 
Jon 5-13     chat session, daily quote
 
Alice 5-13     seek info on rare disease
 
James' 5-13 reply to Jeanene P's 5-11     some suggestions
 
James' 5-13 reply to Sharon's 5-10     life style changes
 
James' 5-13 reply to Monica's 5-7     sleep apnea
 
James' 5-13 reply to Alexandra's 5-5     meds & an upset stomach
 
Vicki 5-13     seek ARVD info & experiences
 
Valerie R's 5-13 reply to Roger's 5-12     oil and vinegar salad dressing
 
Roger G's 5-13 reply to Maggie R's 5-11     travel tips
 
Tom Campbell 5-13     seek opinions on these treatment changes
 
Myrtle C's 5-13 reply to Elizabeth's 5-12     Coreg, meds side effects
 
Cary Deen 5-13     dealing with doctors and more
 
Jon 5-14     quote for the day
 
Roger G's 5-14 reply to Cary Deen's 5-13     dealing with doctors
 
Linda O's 5-14 reply to Cary Deen's 5-13     seek info on device
 
Roger G's 5-14 reply to Tom Campbell's 5-13     making Coreg easier to handle
 
Valerie R 5-14     seek travel with pacemaker advice
 
Robert 5-14     seek ACE inhibitor side effects experiences
 
Lori K 5-14     does anyone take diuretics twice a week?
 
Lori K's 5-14 reply to James' 5-13     how about sharing a recipe?
 
Bill 5-14     intro
 
Sandra Hines 5-14     seek anemia experiences
 
Roger's 5-15 reply to Lori K's 5-14     Lasix experience
 
Lori K's 5-15 reply to Sandra Hines' 5-14     anemia tip
 
Jon 5-15     quote for the day
 


Myrtle C, May 1, 2004 - Hi, As I am now on a very low Coreg dose, my fatigue and brain fog have become worse. When I am shopping and the fatigue hits, I simply can't concentrate, which is when I make bad decisions. It affects me at home also, then my brain actually feels numb or fogged. My husband Jim, wonders if oxygen would help when this happens. I have never read anything about that on this board. Any info on this from anyone? Thanks and be well in the Lord. omieof3@yahoo.com


Carlos, May 1, 2004 - Hi, At age 44 I had a heart attack and possibly some damage. About 10 years later I had a successful triple bypass and about 4 years later, 3 balloon angioplasties, all of which failed (restonosis) about 2 months apart. I changed docs then and have been on a drug routine ever since. The meds I take seem to be the major ones that patients with CHF seem to be on.
     I have an EF of 23% and have been told by the coc that I have mild to moderate CHF. I take Aldactone (spironolactone). I notice I'm getting tired more easily.
     I saw my cardiologist last week and he thinks I ought to come in for another angioplasty and he would redo the 3 balloon procedures with metal drug eluting stents. He did not mention an ICD but during other reading on the Net, I saw references to ICDs as being beneficial in reducing sudden cardiac death, a common cause of death to those with CHF. Would you comment on the following?
     Have you heard that metal stents can reopen arteries? Will arteries so opened, improve the EF of the heart? Do ICDs improve heart function, especially EF? No cardiologist has talked to me about sleep apnea, which I probably have had for years. I'd appreciate your comments. Thanks, Carlos D. cbd@netbeam.net


Jon's May 1 reply to Carlos' May 1, 2004 - Hi Carlos, The balloon angioplasty procedure opens arteries, then the stents are supposed to help them stay open longer before they re-clog. It is possible that opening multiple blocked coronary arteries will improve your EF, but it is not guaranteed. It largely depends on how much damage your heart muscle sustained between the time its blood flow was reduced by the blockages and the time those blockages were removed. An ICD will not improve heart function overall, but in some CHFers, a BiV pacemaker will. Jon.


Katherine H's May 1 reply to Jim R's April 29, 2004 - Hi, I had a similar resynchronization done with my pacemaker in December and knew within days it was a minor miracle for me. I could not believe the difference. It was an extremely easy procedure to go through. As you said, it's just an adjustment of the BiV pacer programming with echos in between. Everyone, including me, was fascinated while watching the echo. Even I could see a difference. It was something I would do again in a minute. kholian@msn.com
 
Jon's note: Was there a stress component? Meaning did they include exercise to see if everything worked well during hard activity? Just curious.


Linda Oline, May 1, 2004 - Hi, I injured my left heel by pounding it on the carpet to straighten my throw rug (very dumb). My PCP said it takes time to heal and cortisone would help. However, since I take Coumadin, he recommended not to pursue that course of treatment because of hematoma and what problems that could bring. Has anyone else out there had this predicament? Thank you, Linda Oline, age 64 with 25% EF. lnoline@hotmail.com


Blanche's May 1 reply to Jesse's April 29, 2004 - Hi Jesse, I am so sorry you lost your dad. You sound like a very wise person and I am so glad you had a best friend relationship with him. bna104@msn.com


Tom Campbell, May 1, 2004 - Hi, It turns out I am not a candidate for biventricular resynchronization. Thanks to everybody who responded to my request for information. tomcam333@comcast.net


Lanes' May 1 reply to Jesse's April 29, 2004 - Hi Jesse, I am so sorry that you lost a dear friend in your father. I can truly understand what you mean by saying don't let anger separate you. My father has been gone just over 2 years and not a day goes by, missing him and wishing it was different. I was angry with him when he died suddenly, ironically as he was being dismissed from the hospital for chest pains. There is no chance to change the past and I can only enjoy the times we had when they were good, and change the relationship with my children. You will be in my prayers. fastlanedelivery@flash.net


Henry T, May 1, 2004 - Hi, Today marks the sixth anniversary of being diagnosed with DCM and CHF. I take all the usual CHF meds, and also Coumadin and amiodarone (Cordarone). I'm on my second ICD. I credit my well being to aggressive docs, strict compliance with meds, a pretty good low sodium diet and a positive attitude.
     Two years ago I retired after 32 years in public education and this past September was called to serve a church near Winchester, Virginia. If anything, my quality of life has improved over this time as I am far more conscientious about exercise and rest. Life is a gift and I am looking forward to many more anniversaries. Well, it's back to lurking for another year. :-) hrticknor@msn.com


Louise D's May 1 reply to Ruthie A's April 28, 2004 - Hi Ruthie, Thanks for the info. Yes, oranges and bananas raise my blood sugar too but I need the potassium. I sometimes only have one or the other a day. The emergency room doctor who first prescribed the Lasix said that my blood would be checked at the clinic to see if I needed a supplement. That was in February. The clinic appointment was on April 22 and checking my blood wasn't mentioned. I was diagnosed with hyperkalemia (high potassium) in January but I doubt that's the reason for not giving me a supplement now. I was taking spironolactone then and that was supposedly the culprit.
     I have no idea what kind of doctors I've been seeing. They don't tell me anything. I received an e-mail recently that said I should ask them what kind of doctors they are. That seems to be the only way I'm going to find out. I haven't seen a diabetes educator. I saw a dietician at a diabetes health fair and she did a meal plan for me. I can't follow it, though. I learned I have diabetes less than 2 years ago and I guess I'm used to it, but I'm not sure. I started testing my blood sugar whenever I had symptoms but I had so many problems with the meters that I stopped testing. I have had a new replacement meter for over 2 months and I haven't used it once.
     I assumed my diabetes was getting worse. That's the point I was trying to get across to that doctor. I guess it didn't work. I was hoping for Acarbose. That's the one med I read about that seems to be okay for heart patients. I can't weigh myself every day. However, the swelling in my ankles and legs is pretty obvious. Sometimes it's painful to even walk. I also have to keep my shoes off my ankles because they don't fit when I have the swelling.
     I wish I could see a CHF specialist. I'll actually just be happy to know I'm talking to a cardiologist. Unfortunately, I don't have health insurance and I've been dealing mainly with the doctors at the county hospital. I don't want this to make them sound bad because I know there are some very good doctors there. However, it would be nice to find one I trust and who will treat all my conditions. Louise. louport35@yahoo.com


John's May 1 reply to Roger's April 29, 2004 - Hi, I would suggest pyridoxal 5 phosphate since it is the active form of B6, and methylcobalamin as the active form of B12. Good luck, John. johndavidw@sbcglobal.net


Ottye's May 1 reply to Jesse's April 29, 2004 - Hi Jesse, I just wanted to say sorry for your loss, I was with my dad until he passed too. It always gives me great comfort knowing I was there for him and I hope it gives you that same great comfort knowing you were there for him. NJetter@cinci.rr.com.


George H, May 1, 2004 - Hi fellow CHFers, I hope this missive helps you through a rough spot some time. My CHF came about when an angioplasty/stent operation went wrong and the stent site hemorraged at about 11:30 PM ten hours after the stent was fitted, giving me a heart attack. That left me with 30 to 40% EF. It took the surgeon approximately 1-1/2 hours to get back in and I now have 3 stents in my left ascending coronary artery, with necrosis (a dead area) across the bottom of my heart.
     As an ex-fitness instructor and acknowledged fitness freak my biggest problem is the utter frustration of not being able to do my daily workout. I have managed to modify and augment my fitness knowledge base to allow me to do quite a bit, so if you are feeling you can't exercise, don't give up.
     I find most regular doctors are not too hot on the fitness side of cardiac rehab, so find yourself a sports medicine qualified doctor for advice and get back into it. I have now had 4-1/2 "bonus" years and have seen 3 granchildren I would have missed. One last piece of advice: If you are trying to get back onto your feet, "Let go, let God." Cheers. George H. zl3kd@xtra.co.nz


Roberta F's May 1 reply to Jesse's April 29, 2004 - Hello, My sincere condolences Jesse, on the loss of your father. May you find the solace of friends and family during this difficult time, and may God bless you. notinksnemr1@aol.com


Roberta F's May 1 reply to James' April 28, 2004 - Thanks James, for the feedback. It never occurred to me to check out the credentials of the sleep study center and staff. That will be my next mission. I'll take your other advice into consideration as well.
     You know, I'm starting to wonder if this lack of referral stuff is a managed care issue, as I'm covered by an HMO. Even so, it's something I should have thought to bring up to my PCP on my own. Anyway, I will follow up and if it means changing docs, then that's what I'll do. However, if this is an HMO policy thing - which we all know can often be user unfriendly - I may have bigger problems to deal with. We'll see. notinksnemr1@aol.com


Margaret D's May 1 reply to Myrtle C's May 1, 2004 - Hi Myrtle, Your husband may be on to something. Have you ever had a sleep study? Many CHF patients are prone to sleep-disordered breathing. I am on oxygen at night only and my brain fog and inability to concentrate felt better immediately! I always say that I felt like my IQ rose 20 points overnight! Also, if your EF is really low, you may not be getting enough blood to the brain to supply the needed oxygen. Good luck. mdavis10@tampabay.rr.com


Jim R's May 1 reply to Katherine H's May 1, 2004 - Hi Katherine, I am very pleased that the resynchronization therapy ended up being a minor miracle for you. I haven't noticed a difference, which they warned me might happen. What are the improvements you felt and were your doctors experienced with this new therapy? I'm wondering if more experienced doctors would have better success with me.
     A quick aside to Jon - there is no stress aspect to this therapy. They work off the baseline you're at and compare a variety of stats rendered from the echo, then moniter to see if an adjustment is an improvement or not, then continue until they reach an optimal setting. fastbreaksme@gwi.net


Valerie R's May 1 reply to Tom Campbell's May 1, 2004 - Hi Tom, I am very interested in why you did not qualify for the CRT pacer. My cardiologist now says I should not have had one and truthfully, it's turned off. Just my pacer and ICD work now. vgrogers@aol.com


Karen, May 1, 2004 - Hi, I was diagnosed with DCM December 1, 2003. I had done wonderfully on a schedule of rest and exercise, a very low sodium diet and medications, until last week. I got off-schedule due to moving my mother, who has Alzheimer's, from our home to an assisted living;, 2 sets of out-of-town company; and a lightening strike to our home.
     Now I am not sure what to do. I am terribly tired most of the time, my legs ache all but constantly, I feel short of breath after little exertion, but I am not retaining fluids that I can tell. I am undecided. Do I go back to exercising (walking and doing sitting exercises)? Do I take a week and just rest first? I am hoping others have experienced similar setbacks and can share what they did.
     My EF in January was 10 to 20%. I take 20mg Lasix, 125mg Lopressor, 0.125mg digoxin, 325mg aspirin, and 10mg Lisinopril. My blood pressure was about 106/66 with a heart rate of 90 most of the time and now it is about 130/79 with a 95 to 105 heart rate most of the time. Any ideas would be most welcome! Thank you so much, Karen. kleegrubaugh@yahoo.com


Catherine L, May 3, 2004 - Hi, How important is it for me to maintain a low-salt diet? I have totally fallen off the wagon for a year now and have not noticed any problems. I work out on my stair machine 4 times a week for 45 minutes, getting my heart rate up to 135 bpm. I am 57 years old.
     I don't have CHF but I have mild idiopathic cardiomyopathy (weak left ventricle) and am on 2.5mg Altace and 50mg Toprol-XL. My EF was 35% when diagnosed and is now 55%. Am I in denial about my heart problem and playing with fire? Is my doctor wrong in saying I can go to 3000mg/day? I probably go over that. I am a little anxious about the replies some of you will give me, but maybe I need a reality check. Thanks. gardengirl47@kc.rr.com


Pamie R, May 3, 2004 - Hi, I haven't posted for awhile, but am curious as to whether others have taken Aldactone (spironolactone). I have just begun taking it for excess fluid, along with taking 40mg Lasix each day. I am a little leary about taking it because of chances of my potassium becoming too elevated. I am only starting in on a half of a 25mg tablet and then having lab work done on Wednesday. My cardiologist plans to increase me to 25mg. Has anyone had any problem in taking it? I have been nauseated and had a bad headache. I am very sensitive to meds. Thanks for any input that you can give me. hprhoda@midmaine.com
 
Jon's note: I'll let others give their experiences. I just want to point out that at 25mg, spironolactone has no diuretic effect - it is given at this dose to reduce mortality - a very important effect! Click the link in your post above for more.


Katherine H's May 5 reply to Jon's May 1, 2004 - Hi Jon, There was no stress component to the test. I was having symptoms that indicated mitral valve regurgitation and that was indeed what they found. I could tell the difference really quickly - I had more energy and less brain fog. kholian@msn.com


Katherine H's May 5 reply to Jim R's May 1, 2004 - Hi Jim, In less than 24 hours after my pacer implant I had much better color and less brain fog. My energy level came back as I was recovering from the surgery and I found that for the most part I sustained those changes, except for the weeks before they did the resynchronization last December. I also noticed fewer arrhythmias and certainly have not had any of those times when I thought I was going to faint.
     My chief complaint after the surgery was that I was getting a frozen shoulder from the placement of the pacer, which was moved 5 months later and I've had no problems with that since the pocket revision. Before the pacer I had a long QRS and a right bundle branch block. My ejection fraction was 30% and my pulse was often in the 40s with meds. Now it is pretty much always at 72.
     My cardiologist worked very hard with me to make sure I completely understood what was going on and that I was totally comfortable with the idea before I proceeded. He was confident I would be a good candidate for this device. I know that my ventricles are paced 100% of the time and the atrium 80% of the time so my heart is obviously happy to have the extra help. kholian@msn.com


James' May 5 reply to Louise D's May 1, 2004 - Hi Louise, Have you considered alternate foodstuffs for sources of potassium? Consider:
     Baked potato with skin, large =1600mg
     Pistachio, one cup = 1261mg
     Almonds, one cup, whole = 1041mg
     Peanuts, one cup = 1029mg
     Sunflower seeds, one cup, with hulls = 317mg
Granted, the nuts are a bit fatty but these all pack quite a punch for potassium, especially the large baked potato. Each of these are also low in sugar, with the highest being 9g of sugar in the pistachios and a mere 4g in the potato (sunflower seeds have even less). By comparison, a single, large banana has 487mg of potassium and about 16g of sugars. jnj@spamcop.net
 
Jon's note: Remember about glycemic index - potatos convert to sugar in the blood so quickly they are considered "sugary."


Jon, May 5, 2004 - Hi everyone, I assume the current chat times are lousy, so I am going to change them again. One will be early and one will be late, so people on both USA coasts can get to one a week, I hope. Suggestions more than welcome! Jon.


James' May 5 reply to Tom Campbell's May 1, 2004 - Hi Tom, Not being a candidate for a BiV pacer is not necessarily a bad thing. You really need to focus first and foremost on dietary and life style changes. That means restricting fluid intake and sodium intake, proper exercise, and so forth. You should also try to go to a CHF specialist as well. Most general cardiologists are not as effective at managing CHF. Restricting fluid and going truly low sodium will likely have a profound effect alone. Try to work your way through The Manual on this site and see if these things help. Hang in there. jnj@spamcop.net


Karen K's May 5 reply to Pamie R's May 3, 2004 - Hi Pamie and all, I was diagnosed with cardiomyopathy in 1991 after going into CHF. My ejection fraction is likely in the 30% range; it has been several years since it was tested. I am seen at a CHF clinic but it appears that if you have no symptoms, other than bloodwork they don't do a lot of extra testing. Because I am stable, I am seen every 6 months.
     I'm responding to your post about spironolactone. I was not taking this med until I started going to the CHF clinic. Initially I was put on 25mg a day along with my 40mg of Lasix. Follow-up bloodwork showed slightly elevated potassium so my schedule for taking these meds has changed. I now take 12.5mg of spironolactone on Tuesday, Thursday, Saturday, and Sunday. On Monday, Wednesday, Friday, and Sunday, I take 40mg of Lasix.
     I also have to be careful of eating foods containing potassium. I would "kill" for a banana or glass of orange juice. It is thought that part of my problem is due to coffee consumption in the morning. I had an appointment last week and have not received any phone call so I'm assuming my bloodwork was passable. Karen. karenk@machlink.com


Scott Brown's May 5 reply to Catherine's May 3, 2004 - Hi Catherine, Since we share opinions on this board, I will give you mine. I know it differs from some people's view. Although everyone on this board suffers from congestive heart failure, there are a lot of different ways you can arrive out of the outcome of heart congestion. Each individual's diagnosis is going to be slightly different.
     According to Canadian guidelines, 2000mg of sodium is the recommended daily intake amount for healthy people. There are a few things we know for sure about sodium intake: Sodium will cause your tissues to retain water; a poorly functioning heart has difficulty removing fluids from the body; fluid retention results in higher blood pressure.
     If you are consuming sodium and not experiencing negative side effects, then I think it is okay to continue your current diet. I would still try to avoid extra sodium where possible - do not add extra salt to food, pick low-sodium foods when this is an option, etc. If your workouts are good and sweaty, you are likely expelling sodium in your sweat.
     Enjoy this while you can. Assuming your condition is degenerative (and I don't know if it is), your heart function may get to the point where you are retaining too much fluid even with your current meds. Long-term diuretic use can cause health issues of its own, so reducing sodium and fluid intake is the only way to balance the equation.
     As a side note, you should make sure your blood pressure is in check. If you are retaining water and just living with it, your blood pressure could be chronically high and lead to other health issues.
     I do exceed 2000mg some days and I feel pretty good most of the time as well. My EF is less than 25% but I do well as long as I take my diuretics regularly. I know I am consuming too much sodium if my diuretic intake is high to get my weight down to normal.
     Okay, the phone lines are open - I am ready to be blasted by the hard-liners. Scott Brown. kitchenerguy@rogers.com


Paul D's May 5 reply to Catherine's May 3, 2004 - Hi Catherine, I'm a bit stunned by the idea that a doctor is telling a patient with a heart problem that 3000mg of sodium a day is okay, unless he is trying to get you to cut down to that. The existing guideline for sodium for healthy people in the USA is only 2400mg, and there are a number of groups suggesting that should be lowered. That's for people with no heart problems! I'm happy that you seem to be doing so well, but so much sodium seems unwise. therealpauld@netscape.net


Roger's May 5 reply to Catherine's May 3, 2004 - Hi, I think I would probably stay about where I'm at, after doing this for the last 3 years - getting to be a habit. If my doctor ever told me 1000 or 1500mg per day was okay, I'd stay put. Don't look for this to ever happen. Of course, this is just me. rkharmony@hiighstream.net


Jon's May 5 reply to Catherine's May 3, 2004 - Hi Catherine, If you've never been in CHF, I would suggest following the USA guidelines for healthy people: 2400mg daily maximum. Think about it - why risk extra strain on a heart being partly compensated by powerful prescription drugs? You might wind up in CHF and trust me, you don't want that. It isn't worth it. Jon.


Roger's May 5 reply to Pamie R's May 3, 2004 - Hi, I've been taking 25mg spironolactone for about 6 months now with no side effects that I notice. I take 80mg Lasix once a week if I need it, usually after the weekend. Sometimes the people at the resturants don't really know if the meat is injected, and sometimes I pay the price. rkharmony@highstream.net


Tom S' May 5 reply to Pamie R's May 3, 2004 - Hi, For better than 7 years I have been taking spironolactone and frankly, I never saw much of a change when I started taking it as opposed to not taking it. I am on 320mg of Lasix (furosemide) a day and 60mEq of potassium chloride daily. Perhaps you are also fixating on every twitch and skipped beat these days. Relax - you will live a whole lot longer. bigheart@muchomail.com
 
Jon's note: If your dose is 25mg daily, you should not see any difference. The benefit at that dose is on mortality, not fluid retention.  ;-)


David Wilson's May 5 reply to Pamie R's May 3, 2004 - Hi, In my experience, Aldactone (spironolactone) helps me a lot. It did raise my potassium one time and my heart doc took me off spironolactone. I got worse and ended up in Club Med with low potassium levels. I went back on the spironolactone and it helped me.
     I fired the heart doc who took me off the spironolactone. The only CHF drug I have problems with is lisinopril, my ACE inhibiter. I recently stopped lisinopril because of a bad cough and passing out due to low blood pressure. Since I stopped lisinopril no passing out or dizzy spells, and the cough is gone. I also refuse to take statin drugs as I have had bad reactions to lopid and baycol, two statin drugs. davybwilson@webtv.net


Kathy H, May 3, 2004 - Hi all, I am hoping you can help me once again. I was diagnosed with CHF and cardiomyopathy in July of 2002, and have ups and downs. My EF is 35% but my BNP tests show I'm not in failure, although I am constantly short of breath. I'm taking Lasix, spironolactone, Toprol-XL, prevacid, advair, celebrex, lipitor and trazadone. I am not able to work but I take full care of my 2 year old grandaughter, who is in our custody. I counted one day last week and realized I went up and down a flight of stairs 62 times in one day!
     I am bipolar and have been stable for about 4 years. I now need to return to taking lithium. What should I watch out for? Not taking lithium is not an option. I cannot take SSRIs and need the mood stabilizer effect of lithium. Thanks for any help. kathy_in_wlsv@verizon.net
 
Jon's note: I strongly suggest you also ask your pharmacist and your doctor about possible drug interactions on this one!


Jack D's May 5 reply to Pamie R's May 3, 2004 - Hello Pamie, You could be right to worry about spironolactone. My doc started me on it along with my other diuretics and I ended up taking large doses of some really nasty stuff to get rid of all the excess potassium in my system. It wasn't bad enough for the doc to hospitalize me (bad call, I do believe) but it was bad.
     The spironolactone also caused a concentration of ammonia in my system that was so bad my breath smelled like window cleaner when I exhaled. It made food taste really nasty. The completely stupid thing was there was no good reason to put me on it. My electrolytes were always normal before, and went wacko during this fiasco. maddjak@hotmail.com


Louise D's May 5 reply to Pamie R's May 3, 2004 - Hi Pamie, I was diagnosed with hyperkalemia in January of 2004. Although the ER doctors blamed the spironolactone then and told me to stop taking it, I don't think it was the only reason my potassium was elevated. I wasn't taking it every day; maybe twice a week if that often, and I was only taking 25mg day. I was losing no water at all.
     When I was first diagnosed with CHF in December of 2002, my potassium, according to the doctor, was unbelievably high. Therefore I think I'm just naturally prone to high potassium levels. I've since been put on Lasix with no potassium supplement. However, if anyone has checked my potassium level, I'm not aware of it. I don't know if it's high or low. However, with 20 to 40mg of Lasix a day, I think I'm probably losing a lot of potassium.
     You're definitely in a better position than I was since your blood is actually going to be checked. I heard that taking spironolactone while taking Lasix is one way to avoid the problem of potassium getting too low. Therefore, you just have to make sure it's the right balance and the blood tests can help with that. Speaking of the right balance, since I need a supplement, I think I may go back to taking spironolactone myself.
     By the way, my symptoms from the elevated potassium were chest pains, heart rhythm disturbances (this from an EKG), and unusal fatigue (I couldn't stop falling asleep). I also had dizziness and headaches but I'm not sure if this was from the hyperkalemia. I hope this helps. Louise. louport35@yahoo.com


Scott Brown, May 3, 2004 - Hi Folks, I had a CT scan Thursday using the dye. I didn't feel the dye at all or have any reaction while the dye was administered under pressure into an IV line. On Thursday night, my upper body got really warm. A few hours later, it got really itchy. I called the hospital and they thought it might be an allergic reaction and suggested an analgesic. My cardiologist confirmed this thought and felt Reactine might help with the symptoms.
     It is now 3 days since the procedure and I still have a red rash mostly around my neck and upper torso. Prior to this procedure I didn't know I was allergic to anything. The itching is a little better, the rash is fading in most places and more pronounced in a smaller area.
     I have some questions. Is this a common reaction to the dye? How long will the rash last? Someone suggested this may have been a cesium dye, which they thought had a half-life of a week. Are there any lasting effects? People were commenting on my great sun tan - I was not in the sun. Is this likely to happen again? Could the reaction be worse next time? I am assuming I will need another CT scan in the future.
     Out of interest, my cardiologist is examining the use of non-invasive CT scans for diagnosing the coronary artery blockages instead of caths. Thanks, Scott Brown. kitchenerguy@rogers.com
 
Jon's note: This is a common reaction, Benadryl will usually stop it in 24 hours, it may well recur, it could affect your kidney function which should alway be tested before such dye is used. I would try to avoid this dye in the future if possible.


Jon, May 5, 2004 - Hi everyone, Monday, I figured out it was Celebrex causing my weight gain through fluid retention, so I took 30mg Demadex, which caused me to pee off 8 lbs in 12 hours. Yesterday, I was plain exhausted so I didn't even get online. I feel much better today and figure now I might as well get used to arthritis pain because every NSAID I try really packs on the fluid after a couple of weeks.
     Here's Jon's quote for the day: "Never look round to see whether any shall note it. Be satisfied with success in even the smallest matter, and think that even such a result is no trifle." Marcus Aurelius, Meditations, IX 29. Jon.


Tom S' May 5 reply to Jon's May 3, 2004 - Okay, So if one mEq potassium equals 75mg of potassium chloride, then I am basically taking 2250mg potassium chloride a day. Wow, maybe I should buy a banana grove instead. bigheart@muchomail.com


Jon's May 5 reply to Tom S' May 5, 2004 - Hi Tom, Maybe so. <g> I figure 60mEq potassium chloride equals 4-1/2 grams. That's the highest daily dose I think I have ever heard. I hope your electrolytes are tested often. It is different for everyone, though. When I take 20mg Demadex daily (roughly 80mg Lasix) I only need 5mEq of slow-release potassium chloride to keep my electrolytes proper. Some people need Lasix just to keep from having high potassium levels. Go figure. Jon.


Pamie R, May 5, 2004 - Hi, I want to thank everyone that replied personally and in this forum to my concerns about taking spironolactone. I really appreciate your input. I am on so much medication since being diagnosed in 1997 with cardiomyopathy, plus I have PBC and am an insulin dependent diabetic.
     I am just curious as to if others have PBC (primary biliary cirrhosis) besides me. My liver started acting up within 6 months of being on heart meds. All my medical conditions leave me fatigued but I still try to walk as much as possible and I know it is best to have a positive attitude. I really appreciate having this heart forum to turn to. Thanks, Jon. You are an inspiration to us all! hprhoda@midmaine.com


Louise D, May 5, 2004 - Hi, I received a questionnaire as part of an application from some agency that is supposed to be helping me apply for Medicaid. I'm supposed to have this completed by a doctor. I just started seeing a doctor at a clinic about 2 weeks ago. I have another appointment with her on Thursday.
     However, the problem is this woman ignores many of my symptoms. I don't think she even acknowledges I have diabetes. At one point, the supervisor of the clinic told her to give me a prescription for nitroglycerin for angina along with one for Prevacid. She gave me the prescription for Prevacid but she said she would wait until I take the stress test (scheduled for June) to give me the nitroglycerin. This is also the one who would not check my eyes when I told her they were burning (I'm sure from high blood sugar).
     This form asks for a lot of information, which I don't think this doctor will or can provide. The form is supposed to be returned by the doctor so I can't answer any of the questions. So what am I supposed to do? Take this form to a doctor who only knows a little about my conditions and ignores some and barely treats others? Should I just tell the state I don't have a doctor who can complete the form? I've been dealing with doctors in emergency rooms the past few years, so I don't have a previous doctor who could complete the form either. What do I do?
     Also, the stress test is to be done in the afternoon. In the morning, they've scheduled another echo. I had one April 13, now I'm going to have another on June 7. This echo too, will be done in the same hospital as the first. I had my first echo in July of 2001 and I've just had the second one in April of this year. Now I'm wondering why I'm having the third one less than 2 months after the last one? These doctors tell me nothing so I'm thinking all kinds of things, especially the worst. louport35@yahoo.com


James, May 5, 2004 - Hi, The current US RDA for sodium is 2400mg. There is a movement to lower that RDA to 1500mg. The average American eats over 8000mg daily. It does not surprise me when I hear a recommendation above the magic 2000mg figure we've all come to know so well. My own cardiologist told me 3000mg-ish was okay. My father recently suffered a second mild heart attack and has an EF of 35%. The dietician told him 4000mg to 5000mg.
     I think these doctors are looking more at realistic intakes rather than healthful intakes. It is not easy to get down even to the RDA, let alone below it. Unfortunately, these doctors are doing their patients a disservice.
     When I went in for my pacer surgery, I was unaware of what low sodium meant. I thought I had cut most out and that my condition had declined as a result of some other issue. Then the pacer had no positive effects whatsoever. I was still short of breath and weak. That was when I started really researched the matter and discovered I was still at almost 8000mg sodium a day. I started counting every milligram and got to under 2000mg with an occasional pop-up to 3000mg - the difference was stark. I can tell when I'm hitting upwards of 3000mg now as I experience shortness of breath. The further below 2000mg I stay, the better I feel. After a few days of right about 1000mg I feel even better.
     Even if one does not feel bad, the idea of taking in 6 times the amount of sodium the body needs and 1-1/2 times the standard recommendation, well, it just doesn't make sense - especially for us. jnj@spamcop.net


Pat's May 5 reply to Scott's May 3, 2004 - Hi Scott, Every time I have had a test requiring a contrast dye, I have been asked if I had ever had an allergic reaction. I would advise that you find out exactly what dye was used on that test so that you can mention it if you have a contrast dye test in the future. Pat. mondays_child_1@yahoo.com


Marly's May 5 reply to James' May 3, 2004 - Hi, I just had my pacemaker upgraded to BiV last April 28. I notice now a difference in my energy level, kidney and intestinal function. Hopefully I will lose gradually my fluids. I have increased weight by 50lbs since January of 2004 despite taking 160mg Lasix and 50mg spironolactone. I am also targeting better sugar control. mcardenas48@hotmail.com


Lori K's May 5 reply to Catherine's May 3, 2004 - Hi Catherine, I also have an EF of 50% or so and have been told by my regular cardiologist to stick to 3000mg of sodium a day. I also am on an ACE inhibitor and beta-blocker. When I went to see a CHF doc he said 1500mg of sodium was the number to go by, so I do.
     I think the regular cardiologist was trying to help me by giving me some latitude so that my life would not change so drastically. He wasn't doing me any favors. I soon discovered how much better I do feel with less sodium intake. My local CHF doc told me to not think of myself as having a heart problem, and go out and start running. One month later I ended up in the hospital with my heart out of whack from a virus. Our disease is real and we are vulnerable sometimes, so take advantage of what you can control, like sodium intake. Keep feeling good! Lori K. thegoof86d@aol.com


Alexandra, May 5, 2004 - Hello, I have not posted for awhile or responded to anyone due to other family problems. I saw my CHF doc last Wednesday and he prescribed Coreg. I have seen so many people here on this medication and was unaware what it was. I know now it is a alpha and selective beta-blocker. He started me on 3.125mg twice a day and will gradually increase it over the next year up to 25mg.
     He strongly told me to take this med with food. I started it 3 days ago and if I do not take it after eating a full meal, it makes me lightheaded. This pill is the size of a grain of rice and I have more side effects from it than my other pills. Is this common?
     I am also on Digoxin 0.125mg, Lisinopril 7.5mg, Lasix 20mg, potassium chloride 10mEq, Synthroid 75 mg, Bentyl 10mg, Wellbutrin-XL 300mg, Darvocet 100-650 as needed. I also have a biventricular pacemaker, which has done wonders for my everyday health. I have IDCM, never had high blood pressure - always low and even lower with the Lisinopril. I follow all doctor's orders for diet, fluid and exercise. I just didn't know that the next 2 to 3 years would be adding and tweaking meds to stabilize my condition, which has been stable since January with no CHF symptoms. Any advice would be appreciated. Thank you. jakethesnake56@aol.com
 
Jon's note: People with low blood pressure do better with Toprol-XL, which is just a non-selective beta-blocker, thus does not lower blood pressure as much as Coreg.


Ruthie A's May 6 reply to Louise D's May 5, 2004 - Hi Louise, I have 2 suggestions: First, fire your doctor and find another one who will listen to your questions and explain them in people-English. Do not leave the doctor's office until you understand exactly what is going on and what you are supposed to do until your next appointment.
     Second, perhaps you want to go back to the agency that is to help you get Medicaid and ask them what to do. Isn't that what they are there for? Just my opinion, of course. Ruthie A. rlaba51@yahoo.com


Jack D's May 6 reply to Louise D's May 5, 2004 - Hello Louise, Perhaps these doctors are ignoring your symptoms because they are just like the doctors before, who explained to you very carefully that you aren't having symptoms and that you don't have diabetes. You explained this months ago and claimed that, even though the tests done by the doctors showed that you didn't have the diseases you claimed, that the tests were wrong and the doctors didn't know what they are talking about. Just like you say that you have to keep changing glucose meters because they don't work right. Maybe you should listen to the doctors. I don't understand how someone who doesn't work can keep buying new glucose meters. maddjak@hotmail.com


Myrtle C, May 6, 2004 - Hi, I saw a new procedure on television by a researcher in Texas using a new tool to "scrape the gunk" out of arteries rather then using a stent to compact and push it aside. I know this may not be available immediately but it certainly sounds promising. Never give up! (Did I say that?) omieof3@yahoo.com


Jon, May 7, 2004 - Hey, Look out - I'm on a quotation kick apparently. <g> Here's Jon's quote for the day: "Even in the meanest sorts of labor, the whole soul of a man is composed into a kind of real harmony the instant he sets himself to work." Thomas Carlyle, Past and Present. Jon.


Sheryl C, May 7, 2004 - Hi, I was in the chat room last night and was talking to 2 very nice ladies. My computer crashed and by the time I got back on line everyone had left. We were in the middle of a conversation that I would like to finish. Please e-mail me so we can do so. I enjoyed visiting with you two! I hope we can try again next week. Sheryl C. cvprehab@hotmail.com


Catherine L, May 7, 2004 - Hi, Thanks Jon, Scott, Paul and Lori for your thoughts on sodium intake. I was afraid most of you would say keep to 2000mg or so. I have never had edema and my blood pressure is low, maybe 80 or 90 over 60 or 70 (that's on low doses of Toprol-XL (50mg) and Altace (2.5mg). I can't tolerate higher doses because of my low blood pressure. So you still think I should watch the sodium even if I have no edema problem and have low BP?
     The first 6 months after my diagnosis of idiopathic cardiomyopathy I was very careful what I ate, and I was depressed because I was so aware of my condition. Now I am not depressed and eat anything. I read the posts on this site only once a month, not daily, because I found that I got too depressed hearing how bad some of you are. I felt I was looking at my future.
     Maybe the future is now. Okay, I will wise up and get real as Dr. Phil says. This will be a challenge. I hate cooking, but I will shape up. Thanks for your thoughts and any final advice you have, especially Jon. Catherine. gardengirl47@kc.rr.com


Monica, May 7, 2004 - Hi, Does anyone suffer from sleep apnea. I have been so tired lately and snoring like crazy, my hubby says so. When I went to the heart doc Wednesday they gave me a machine to be tested for this. They said if anything looks abnormal then I go to a hospital for further testing. I am just wondering if anyone suffers from this. Thanks all and God bless, Monica. monicawhalen@hotmail.com
 
Jon's note: Don't forget to check www.chfpatients.com/biosgate2.htm for others you can e-mail who have sleep apnea.


Evelyn, May 7, 2004 - Hi, I know I haven't been around much so I figured I'd better update what's been going on. If for any reason, to let you newly diagnosed people know that in time things can get better. I'm not trying to give false hope here, though.
     I was diagnosed last May with DCM with an EF of 17%. Then in September, I started showing signs of CHF. I also started seeing a CHF specialist who switched me from Toprol-XL to Coreg. I was already on Altace. He then put me on Dyazide. I went through lightheadedness and exhausted days. I even spent a couple of nights at Club Med.
     I've gone through a lot of emotions and days when I thought I wasn't even gonna see the following day. I've changed my diet and I try to keep active and get in a little exercise. If I get out of breath I just take a break or two. I listen to my body and pay very close attention to me and don't so much worry about everything else.
     There are still days when I don't feel much like doing anything but I tell myself I'll just do one thing and then I'll rest. The CHF doc says I'm doing fine, with no signs of CHF, and my EF is up to 40%. Most days I feel great, I wake up in the morning to the birds singing and I look in the mirror and go, "Welp body, how do we feel today?" I look forward to everything and I enjoy each day as much as possible.
     I'm not telling this to make anyone feel bad - I'm telling this to say, give your body time to heal and always keep hope. To all of you, I truly hope you are having a good day. God bless, Evelyn. eveysue@hotmail.com


Jon, May 8, 2004 - Hi everyone, Well, here's Jon's quote for the day: "Hypocrisy despises authenticity." Charles R. Swindoll, Simple Faith, p. 3.
     I read a study the other day saying that about half of all newly diagnosed CHFers were depressed when released from their first hospital visit, just after diagnosis. No mention was made of the fact - and it is a fact - that this kind of "depression" comes at least partly from the lousy job medical professionals do explaining CHF and its consequences to those newly diagnosed CHFers.
     How many of you understood what was really wrong with your heart; how it happened to you; what the exact treatments would be; what those treatments were supposed to do for you, and how soon; exactly what life style changes would make you feel better and live longer; what supplements and alternative treatments might help; and how your life was likely to be different because of all this?
     Yeah, me too. I wonder why those new CHFers are so often depressed?! Jon.


Louise D, May 8, 2004 - Hi, I had not received any replies to my post about the doctor before the appointment so I went. I'm actually glad I did because it helped me decide what to do. Ruthie, I decided I can't tolerate her and I have no other choice except to tell the agency about this problem.
     Coincidence I suppose from my last post about doctors not telling me anything - she told me why she thinks I need a stress test and echo, both scheduled next month. I know why I'm having them, I meant they don't talk to me about the results. I think she knew that. She also said the stress test will determine if my symptoms are from a GI problem. For 6 years and over 40 doctor visits, they haven't figured it out yet?
     I wouldn't let the nurse check my blood sugar, so she said the doctor would want to know why the nurse didn't do it. She told me to tell the doctor when she asks that I didn't want it taken. Well, the doctor didn't ask. She also ordered another blood test for thyroid disfunction. I had one of those when shortness of breath was first noticed in 2001 - it was negative. I don't think I need another one.
     Also, the doctor said my blood pressure was good, although she said there was no change in the swelling in my legs from 2 weeks ago. Previously, they were telling me the swelling was because of high blood pressure. Well, if I don't have high blood pressure, why do I have the swelling in my legs? I read from someone's post that the presence of swelling causes an increase in blood pressure. Plus everything I eat tastes salty. I told her about other symptoms, but she discounted them.
     I guess it's back to emergency rooms when needed, unless this agency helps me find another doctor. I'm trying to decide now if I should keep the appointments for the tests next month. louport35@yahoo.com


Jon's May 8 reply to Louise D's May 8, 2004 - Hi Louise, I went back and read all your posts to be sure I wasn't just running my mouth here (I have been known to take that road <g>). If you refuse tests like blood sugar and thyroid function tests, why complain about doctors not ordering tests? If a patient won't take a test, why should a doctor ask the patient about it? Perhaps she thought mentioning it would just upset you.
     This doctor seems to be making an honest effort. Why not play along and see what these tests show? Not taking heart tests like a stress test and echo after she has explained why she believes you need them, suggests that you are not truly partnering with your doctor to get accurately diagnosed and effectively treated. It is a partnership, a 2-way street.
     You have had bad experiences with doctors in the past but so have many of us. We must move on if we want to improve our quality and length of life. To quote Michael Marshall Smith: "Memories are nothing more than a book you've read and lost, not a Bible for the rest of your life." One way or another we learn to forgive those who hurt us in the past and make new partnerships so that we can move on with our lives.
     I'm about as contrary as anyone on earth - ask my wife. <g> It has been hard for me not to second guess my doctors before I let them do their thing. A prior primary care doctor literally almost killed me, and certainly pushed my heart function into the toilet before another doctor got it right. I learned to let that go and partner with other doctors, who now treat me effectively. They are not always right but then again - just like me - they are only human. Together, we manage my health care pretty well overall.
     Why not give this doctor a shot at doing it her way and see what happens? Emergency Room care lacks continuity - it prevents a doctor from accumulating numerous details about your medical history and life style that make a real difference when it is time to diagnose or treat your health concerns. It also prevents trust from occuring between doctor and patient. Jon.


Jack D's May 8 reply to Jon's May 7, 2004 - Uh Jon, Do you think you could find some quotes in modern English? The last two were a little difficult to translate. maddjak@hotmail.com
 
Jon's note: Them modern peoples ain't often my cup of tea!


Carla's May 8 reply to Catherine's May 7, 2004 - Hi, Being new to the world of DCM I understand how overwhelming all the restrictions are but I too have started "relaxing" a little bit and I feel so much better. When I'm going to be eating something "bad" for me, I just try to allow for it the rest of the day. You know, there's a fine line between being ill and taking really good care of yourself, and being ill and living life to the fullest that you possibly can, without ending up in the ER! carla@cnbt.com


Jon's May 8 reply to Carla's May 8, 2004 - Hi Carla, I agree. It can be hard to remember that over time, we CHFers must follow a carefully thought out plan to stay feeling good. Personally, I cheat on both aspects of my diet (low-sodium and low-carb) about once a week. This lets me feel like I am "living" instead of constantly restricted.
     However, my heart function is much better than it used to be. When my heart function and ability to be at all active were very poor, I doubt that I cheated on my sodium intake once a month. It all depends on your individual situation.
     Even now, when I cheat, it's not to a serious degree - just enough to make me feel indulgent. Taking NSAIDs, not exercising regularly, etc,..., can make us more prone to retaining fluid so we have to consider all aspects of our life before deciding whether or not we can "cheat" without paying too high a price.
     Another risk is, of course, making ourselves crave salty foods again by cheating too strongly or too often - not a risk to be taken lightly. Jon.


Roger's May 8 reply to Monica's May 7, 2004 - Hi, I have sleep apena and about 3 years ago I was just about fired for messing up on the job. I didn't realize I was sleeping for just a few seconds and really messed things up. In a sleep study (the first) I stopped breathing 45 times per hour and the last one I did was zero times in a hour. I am on a bipap machine and it really helps! Also I was falling asleep on the way home from work. I thank God I never hit anybody! rkharmony@highstream.net


Jim T, May 8, 2004 - Hi All, Yes, I am still with the living! I have not been able to post in a long time, but have been reading everything. I was put in hospice in April of last year. They said I would live 3 to 6 months, and that's how I felt. Things went from bad to worse. By June I could not get out of bed. I was on 400mg of morphine every day plus all the oxycodone I needed. By the last of July I was very low and was told I would live 2 to 3 days. I got so bad that hospice couldn't handle it and I was put in the hospital. After about 3 days they said there was nothing more they could or would do.
     At home I was really bad and in lots of pain. My wife was helping me down the hall about the middle of August and I prayed, "Lord, either fix me or take me home." Before I got back to my chair I was feeling better and over the next few weeks, every day I felt better and better! In January, the doctor said I could no longer be in hospice because I felt too good.
     Then came the long spell of getting off morphine. That took about 12 weeks and I am still feeling that stuff, but to God be the glory, I am off it now. I can't say why He healed me and others He does not, but I know He touched me! I am sorry to be so long-winded, but I feel bessed. Jim T. jcrichtontaylor@voyager.net


Wilda, May 8, 2004 - Hi, I would appreciate hearing from others who have an LVAD. My husband just had open heart surgery yesterday to have his put in. I would like to know what to expect with this and what kind of recuperation will be necessary. Thank you. Randy's wife Wilda. lwild22day@aol.com


Ottye's May 10 reply to Jim T's May 8, 2004 - Hi Jim, I am so happy for you, for your healing. Ain't it good to know that not only does God hear us when we pray but He answers?! None of us know why God heals some and not others, but God does what He does and is who He is. Keep being blessed and getting blessed. NJetter@cinci.rr.com


Vee's May 10 reply to Jon's May 8, 2004 - Hey Jon, I liked your Saturday essays, both of them. You're scaring me a little though. <g> Could it be you're becoming not just a wise but a mellow old fellow? Vee. imagine_@earthlink.net
 
Jon's note: A dose of Jon in person cures everyone of any idea I am getting mellow - or wise.  <g> (I'm ignoring the "old" part!)


Roger G's May 10 reply to Jon's May 8, 2004 - No kidding, Jon! And folks, depression can depend a lot on you and how you look at the situation. Let's face it - life has given us what we have and that is all we are going to get. We have a lot of opportunities to make less of what we have and some opportunities to make more of it. Look back on all the super fantastic times you have had. Look forward to all the super fantastic times you still have in front of you. They may be different than the past but they may be even more precious than the past because you may appreciate them more.
     I had to give up skydiving and scuba a long time ago. People just don't understand, especially doctors with their measurements and numbers. They have no comprehension that getting a bag of groceries can wipe us out for the day. They have no idea that we live on a swing regulated by meds, salt, rest, and all those other things we do to stay alive.
     Attitude is everything! Screw it! Hire merry maids to clean the house, have your local grocer fill your cart for you and put it in your trunk for an extra 5 bucks, send them an e-mail with your order, tell your bed partner that you can still have sex regardless of what they think and how you look at the end, go to the airport and use the electric cart to get to the gate, get on the plane when they pre-board and visit a friend you have not seen in awhile; but most important, never give up! rogergthree@earthlink.net


Roger G's May 10 reply to Louise D's May 8, 2004 - Hi Louise, I read Jon's response and I agree with him. One addition: Beat your doctor over the head with information you need your doctor to know! Ask more questions than they care to answer every time you are there. You are the customer.
     My ex-cardiologist (and I make them send me their notes from my appointments) refused to add that I sleep sitting up because he did not hear that during the appointment. He also failed to add that my EF had dropped from 30 to 15% and discounted the change when I pointed it out to him. I wonder where his ears were, and why would he have a problem adding that to his notes? His dates were also wrong on reports by 6 months into the future. Still, like Jon tells us, they are only human, but it is your life and health - not theirs. rogergthree@earthlink.net


Roger's May 10 reply to Jim T's May 8, 2004 - Wow! Amazing what the Lord can do! Your job here on earth is not done yet. rkharmony@highstream.net


Roger's May 10 reply to Carla's May 8, 2004 - Hi Carla and Jon, I also try that but feel really guilty after and then just wait for the pounds to go on! I don't do it very often, though. Most of the time it is at a restaurant where they tell me no additives or sodium. rkharmony@highstream.net


Jon, May 10, 2004 - Howdy-doo everybody, All these quotes can be totally ignored by everyone. I won't defend any of them, just have the urge to share them. This one is interesting because of who is saying it:
     "We have too many men of science, too few men of God. We have grasped the mystery of the atom and rejected the Sermon on the Mount. ... The world has achieved brilliance without wisdom, power without conscience. Ours is a world of nuclear giants and ethical infants. We know more about war than we know about peace, more about killing than we know about living." General Omar N. Bradley, Chief of Staff, United States Army, Boston, November 10, 1948 Jon.


Lori K's May 10 reply to Catherine L's May 7, 2004 - Hi again Catherine, I read your new post and just want to say that while you may go for months or years without having any problems with your current sodium intake, things can change. I also have borderline low blood pressure and have had CM for 3 years. Only in the last few months have I noticed more SOB and belly bloating, if I push the envelope with my salt intake. You can have low blood pressure and still retain fluid.
     Fluid retention shows up differently in different people. Some get more SOB and fatigued, some get swelling in their gut, legs, face, and never in their ankles. I think we all cheat on our diets sometime just to get those little enjoyments out of life. Watch for weight gain, and otherwise just enjoy feeling good. How you feel should be most of what matters. Lori. thegoof86d@aol.com


Sharon's May 10 reply to Carla's May 8, 2004 - Hi, I still class myself as newly diagnosed (November of 2003) because I am still in the process of making vast life changes. At 29 years of age with 2 small children to raise alone, I found strict diet changes extremely depressing. Children don't appreciate the importance of low salt, fat and sugar when there is nothing wrong with their health.
     The ongoing arguments every day about healthy food was a recipe for anorexia nervosa. As well as realising the need for them to get into healthy living early on and my own life preservation, there is also the need to enjoy living! I am not as paranoid these days. I am learning to accept and relax with CHF, which is also helping improve my quality of life.
     In Britain, 3g of sodium is the target allowance (Jon's note - this said 300mg but I think that was a typo). I have no idea how close I get to this allowance or by how much I exceed it. If I'm ignorant, at least I'm honest. I take my Coreg, ramipril, thyroxine, aspirin, furosemide, spironolactone, isosorbide mononitrate, and atorvastatin (in the highest possible dose on most of them) religiously and give thanks that I tuck my children in at the end of each day. They also accept a happy unwell mum far better than a strung out obsessive and miserable mum. So I totally agree with you Carla, that learning to relax and giving yourself a break is also much needed. shazwill7@aol.com


Brad, May 10, 2004 - Hi, Friday was the first time anyone said the words "heart failure" to me. I had an MI in January of 2003. I knew it was bad. A stress test in April of 2003 showed dead spots and an EF of 40%. I didn't know what that was. I felt great and continued to play hockey and coach.
     I run at least a mile and a half a day, lift weights, eat right and my blood work is textbook perfect. To make a long story short, I had a dizzy spell about a month ago. My blood pressure was 86/52. I had an echo and EKG, and another stress test Friday. I went 13 minutes 40 seconds on the stress test. Now I have an EF of 25%. The doctor has no clue what to do. Most drugs would drop my already low BP. My BP is below 95/65 almost every day. My resting heart rate 56. I take an aspirin and 40mg lipitor. I feel great but I'm terrified. tonk53@hotmail.com


Myrtle C's May 10 reply to Jack D's May 8, 2004 - Hi Jack, You seem to have picked just the right name for your e-mail moniker. How about this quote: "A single grateful thought raised to heaven is the most perfect prayer." I pray you will become a bit more grateful for this web site and Jon and all the people here that try to help each other; that includes you. omieof3@yahoo.com
 
Jon's note: Jack's just playfully giving me a hard time - we've been doing it for years by e-mail and post. Strange as it may sound, we actually enjoy each other's orneriness.  ;-)


Jon, May 11, 2004 - Howdy-doo everybody, If you have Medicare, here's a potentially useful resource: www.cms.hhs.gov/partnerships/tools/materials/medicaretraining/default.htm. Also, see www.cms.hhs.gov/medlearn/drugcard.asp, which includes Medicare drug card information.
     Here's Jon's quote for the day: "Chance favors the prepared mind." Louis Pasteur. Jon.


Maggie R, May 11, 2004 - Hi, Roger's post about taking the electric cart at airports raised questions for me. I am taking a 3 week trip to Europe and am a bit concerned. My doctor told me it was fine for me to go but I just never considered the problems I might encounter with meds and getting from one plane to another, and sitting for hours. I can't sprint anymore!
     Does one advise the carrier that one has heart problems and ask for special consideration? I would appreciate any advice on how to best do this air travel thing! madmaggie@mindless.com


Scott Brown's May 11 reply to Brad's May 10, 2004 - Hi Brad, I know nothing about your background from your brief e-mail. I assume your doctor has referred you to a cardiologist. preferrably a heart failure specialist. A specialist will be able to tell you how to continue to exercise. Exercise is a good for heart failure if it can be tolerated, and it sounds like it can for you. If you are used to lifting really heavy weight, the doctor will likely put some limit on this.
     For drugs, Lipitor is not going to be a big help for heart failure unless you have a problem with blocked arteries, high cholesterol or a family background of heart attack. You need the basic heart failure regimen of diuretic, ACE inhibitor, and beta-blocker, etc. These drugs will make a world of difference for a lot of heart failure patients. Diuretics can make you feel nasty because they tend to temporarily drain your electrolytes.
     Nobody can tell you not to be scared. Heart failure is an illness to be taken seriously. I am 34 years old with an EF of 24% but I feel good most days. The symptoms are always there, but life is relatively normal and I have a good pretty good quality of life. Really, managing this thing becomes part of the routine. Some people have heart failure and they don't even know it; perhaps you are lucky to know now. Some of the meds like Coreg have improved mortality.
     Feel free to e-mail me if you have any questions. Thanks, Scott Brown. scott.brown@sunlife.ca


Elizabeth K's May 11 reply to Brad's May 10, 2004 - Hi Brad, Rats on the bad news. I love activity too. My heart attacked me last fall and I just got my kayak and mountain bike ungrounded - with a ton of rules. True, my cardiologist has an arm in a sling but I don't think I hurt him much. <g>
     Seriously, exercise and activity after a cardiac episode has a whole new set of rules so you don't do more damage to a weakened muscle. Basically, we need to go slower and longer to get the same benefits from exercise.
     Educating yourself is the best defense to that terror we all know. Start on this site and the links and wander the web. Also, cardiac rehab is an emerging specialty, usually associated with hospitals. Find a program and see what they have to offer. Here we have formal monitored classes or open workouts with lots of lectures and access to therapists who specialize in how the heart responds to exercise (never to be confused with the cardio "specialist" running the spinning class down at the gym - they'll kill you).
     You might find that many doctors are a bit slow to be excited about lots of activity. The research on what aerobic and resistance training does to benefit CHF is pretty new. This means you will want to be proactive in educating yourself and seeking out resources.
     Don't give up on help from the drugs. My blood pressure drops just for the fun of it so it was 6 months before I start wobbling from the minimum Coreg to the next dose. In addition, there are many drugs available. This is apparently a long-term game and requires some patience and tenacity from you and the docs. Wishing you great outcomes. WmOccam@aol.com


Lori K's May 11 reply to Brad's May 10, 2004 - Hi Brad, Did the docs put you on meds back in April when your EF was 40%? Normal is 55% to about 70%. I had a drop in 6 months from 50% to 38%, without having been given meds. I then was put on Altace, then Zebeta (a beta-blocker) titrated up to target dose over several weeks. My blood pressure has hung in there. Lots of people can still take the meds with low blood pressure. You have to go slow with dose changes and take it easy (stay home) on the few days after a new dose increase.
     I had the same thing with dizzy spells when my EF dropped after diagnosis. That was my only problem really. I did not have a heart attack, but I remember the complete shock of being told I had CM. It's now been 3 years and I function pretty well and am very active, so hang in there! Lori. thegoof86d@aol.com


Roger's May 11 reply to Sharon's May 10, 2004 - Hi, At first it does seem to be very restrictive, but after doing it for awhile it is just natural to me. At first when I got CHF, I just gradually cut back and now consume 300mg of sodium per day without too much thought. Also, from this you get to have the real taste of food without all the additives. I use a lot of natural herbs, garlic and pepper for seasoning. I took my wife to lunch Sunday after church and all they were serving was breakfast so I ended up with a small (and I do mean small!) bowl of fruit. rkharmony@highstream.net


Jeanene P, May 11, 2004 - Hi all, I have recently, within the past month, been diagnosed with CHF. I am so confused. I read your messages and see you on all this medication, etc. I currently take furosemide 20mg daily and triampterine/hctz 37.5/25 daily. I have taken the latter for the last 3 to 4 years for edema in my feet, calves and ankles. My doctor never tested me for CHF.
     My current doctor ran the treadmill test, echo and a chest x-ray. He said I have congestive heart failure, prescribed Lasix and sent me on my way. After reading this site I am wondering if I am getting the right treatment. I don't even know to what extent or stage I have this disease.
     Am I just paranoid or missing something? I quit smoking in February and just recently passed National testing for EMT-B and I don't want to give that up. I don't understand this disease at all, nor do I understand I guess, how life threatening it is. Can anyone enlighten me? I am not trying to sound flippant or rude, I am just confused. Thanks for any help you might afford me. Jeanene P. mp20217@alltel.net


Catherine L's May 11 reply to Giorg's March 11, 2004 - Hi, If someone is on a statin to lower their cholesterol, could they counteract the effect of the statin on their CoQ10 levels by taking a CoQ10 supplement? Also, I've been hearing in the news that levels previously thought normal for Americans (like a total cholesterol of 200) are actually still too high. This sounds like the recent government revision of sodium guidelines. Does anyone know what levels of cholesterol/HDL, etc,..., require statin treatment? Catherine. gardengirl47@kc.rr.com
 
Jon's note: Yes, a CoQ10 supplement will counter statin effects.


Dave T, May 11, 2004 - Hi, My wife, who is an insulin dependent diabetic, was recently diagnosed with CHF and put on Toprol-XL among other heart medications. I have noticed her blood glucose levels are very high compared to before starting these medications. Her diet has actually gotten better (low-sodium, etc). Could the Toprol-XL be causing this wide swing in her blood glucose levels? Would Coreg be a better choice for her than Toprol-XL? djthibodeau@mybluelight.com


Jon's May 11 reply to Dave T's May 11, 2004 - Hi Dave, All beta-blockers tend to raise blood sugar. I doubt that Coreg would be any better. She should discuss this with her doctors (one of whom is hopefully a heart failure specialist) and then decide if the rise in blood sugar is serious enough to offset the large CHF benefit of Toprol-XL. Jon.


Jon, May 12, 2004 - Hiya everyone, Here's Jon's quote for the day: "Pride requires nothing of which to be proud. It is the ultimate in narcissism." Philip K. Dick and Roger Zelazny Jon.


Jack D's May 12 reply to Jon's May 11, 2004 - Hi all, Jack's quote for the day: "If at first you don't succeed, maybe you are holding the wrong remote." Jack D. maddjak@hotmail.com


Jacky's May 12 reply to Maggie R's May 11, 2004 - Hi, By all means talk to the airline when you book the tickets. Tell them the problem (not being able to walk far, breathlessness, anything like that). They will arrange a cart ride or if necessary, a wheelchair. Confirm all this with the agent when you check in on the day. The walks at some of these airports is horrific! Enjoy your trip. Jacky. jackymwb@earthlink.net


Ruthie A's May 12 reply to Jeanene P's May 11, 2004 - Hi Jeanene, I'm sorry you have joined our CHFer ranks. Don't worry about being confused; we all are to some extent when first diagnosed. To help answer a lot of your questions, the first thing you need to do is read The Manual. It will give you a lot of basic information on meds, diet, how you will feel and what that means, etc.
     It's not the end of your education however, just the beginning. The next thing is to make sure you are seeing a CHF specialist. I can't stress this enough. It is extremely important to your health and wellbeing. Don't settle for a regular cardiologist. While they do treat some CHF patients, their primary focus is cardiovascular disease, which CHF is not. A CHF specialist is up on all the latest and greatest for meds, treatment protocols, etc. He will help you learn more about your illness and advise you on how to care for yourself. Trust me, it's worth the effort to find one. In fact, he might save your life one day, as mine did me. Ruthie A. rlaba51@yahoo.com


Ruthie A, May 12, 2004 - Hi everyone, I finally made it into the chat room Monday night and enjoyed meeting the 3 others that were there. Too bad more of you were not able to join us. I found that since I had been dealing with CHF longer than the others in the room, it was a great opportunity to share my experiences and provide encouragement to those who were still fairly new at this game. To the rest of you old-timers (sorry Jon, but reality is reality! <lol>), I would encourage you to show up at chat once in a while and make something good come from your years of struggle with this awful illness.
     Is that a good enough commercial to suit you, Jon? ;-) Ruthie A. rlaba51@yahoo.com
 
Jon's note: You bet. Now, if someone would just remind me when it's chat time! I keep remembering after everyone has left. Give me time - I'll get it right eventually.


Roger's May 12 reply to Dave T's May 11, 2004 - Hi, We are all different, but Coreg hasn't messed up my blood sugar readings. I do know from what others say that there are a lot of meds that really do a number on you as far as blood glucose readings. rkharmony@highstream.net


Roger, May 12, 2004 - Hi, Having CHF, I eat a lot of salads. My main dressing is oil and vinegar, but I have found a few low-sodium dressings. Kroger has a poppy seed one at 65mg, Betty's at 60mg, and I found a new one yesterday at Kroger, Bacon honey mustard at 75mg. I hope this helps someone. rkharmony@highstream.net


Tom K, May 12, 2004 - Hi, I discovered I have CHF last September. I was put on all the meds, even an ACE inhibator, which they said I could not tolorate since it makes one of my blood readings go up. I was discouraged because I couldn't take it. Another heart doctor took over my case and put me back on an ACE inhibitor, and so far my readings have been stable so he doubled my dose this week. I am pretty happy that he did this and that I tolerated it. Has anybody else had this happen to them? kennysrodshop@aol.com


Elizabeth's May 12 reply to Dave T's May 11, 2004 - Hi Dave, Here I am being different from Roger. I'm currently titrating my Coreg dose up and experiencing increases in glucose levels. Nothing horrific, but big enough to require a few more units of insulin.
     The following link will give you a large (23 page) PDF file about Coreg including its side effects. The data is from GlaxoSmithKline, the drug's manufacturer. They do mention increased glucose: http://us.gsk.com/products/assets/us_coreg.pdf. WmOccam@aol.com


Catherine L, May 12, 2004 - Hi, There's been a lot of publicity about C-reactive protein testing for arterial inflammation as an indicator of heart disease risk. I've been thinking of getting a CRP test, just to find out what my risk is. Has anyone any info on this test and its validity? I'm curious. Thanks, Catherine. gardengirl47@kc.rr.com


Jon, May 13, 2004 - Hi everyone, There's a chat session planned for tonight at 6:00 PM Central Standard Time (1800 hours). Here's Jon's quote for the day: "The man who said, 'The harder the toil, the sweeter the rest,' never was profoundly tired." Naturalist John Muir
     Lots more posts later, I have to do my treadmill exercise and then cook up a recipe I've never tried before in time for my wife's dinner! Jon.


Alice, May 13, 2004 - Hi, The cause of my CHF after multiple tests by a CHF specialist is constrictive chronic pericarditis. I have been reduced to being housebound from daily swimming, square dancing, and long walks. The shortness of breath with exertion is devastating. I take 40mg Lasix, and 40mEq potassium. This does nothing at all for me. My abdominal swelling and shortness of breath continue. There seems to be no treatment for this rare disease. Does anyone have any suggestions? truffles92110@yahoo.com


James' May 13 reply to Jeanene P's May 11, 2004 - Hi Jeanene, Two things you need to do are first and foremost get to a CHF specialist, and secondly give The Manual a read on this site. You noted that you are on triamterene/HCTZ and furosemide. That's kind of a double whammy. If I read your post correctly, these came from 2 different doctors, correct?
     Standard treatments and diagnostics are used in CHF therapy these days. There will be some variation but not too much. You need to see a CHF specialist as soon as possible or at the very least see an established cardiologist. While you're working on that, start looking at how much sodium and fluids you ingest during an average day. Your goal will eventually be to get under 2000mg per day of sodium and about 2 liters of fluids each day (soda and juice count as much as water). Work with your doctors on this though, don't go cold turkey especially with the meds you're on. jnj@spamcop.net


James' May 13 reply to Sharon's May 10, 2004 - Hi Sharon, I can oh so sympathize with you. I am now 35 and a stay-at-home dad. I have CHF and eat low-sodium while the rest of my family does not. I have a 2 year old daughter and a 9 month old son so the kids just sort of eat what they get. :-)
     It takes time to get accustomed to the new diet but after a bit we all adjust. My father was just diagnosed with heart problems (coronary blockage) and has had to reduce sodium intake as well (although he was told 4000 to 5000mg a day, which is idiotic but that's another discussion). At least now I can usually eat over there. When they cook, they no longer use salt and they buy foodstuffs that are low in sodium by default. It's not nearly as healthy as my own cooking, but that's oksy. :-)
     My goal is to simply show my family that there are healthy, flavorful foods that do not include tons of sodium. I use recipe books and recipes off the Net, adjusting them as I go. I have a couple of great spaghetti sauces that crank out 2.5 quarts and about 600mg for the whole bit (about 30 to 40mg per serving), my home made bread absolutely rocks at about 10mg for an entire loaf, and I can whip up a stir fry that rivals anything you get at a Chinese restaurant, fried rice and all. I'm even working on replicating a very popular sauce from a local Benihana that is not available at other Benihanas. They were Samurai then bought out by the chain and kept their sauce.
     I've also turned to homesteading as a way of life and intend to further that endeavor as well. These are of course all massive life style changes but they so improve quality of life that even without the CHF they're valid. Hang in there and keep plugging away! jnj@spamcop.net


James' May 13 reply to Monica's May 7, 2004 - Hi Monica, I suffer mild sleep apnea and use a CPAP at night. If you have any questions, feel free to drop me a line off-board. A couple of important points include that many CHFers also suffer sleep apnea. It can be the cause of CHF in some cases.
     Secondly, to be diagnosed with sleep apnea and properly treat it, you need to see a board certified sleep doctor and go to a board certified sleep lab. In case you didn't catch that, I said "board certified" in both cases. A PCP can not treat this condition effectively, period. Don't let anyone tell you otherwise.
     The course of diagnosis usually goes something like this: (a) You meet with the sleep doctor and discuss your symptoms. He schedules you for a sleep study. You go to the sleep lab and they hook a bunch of wires and some straps and so forth up to you, then you go to sleep. They monitor you through the night, taking a billion readings. Over the next few days, the sleep techs score the test and pass it along to the sleep doc, who renders a diagnosis.
     If you are diagnosed with obstructive sleep apnea, you are scheduled for a second sleep study called a titration. During this second study they monitor you while a mask with air pressure is on your nose. The techs will then tweak the pressure until they get it to where you no longer have any events.
     If you are diagnosed with central sleep apnea, which is rare, you are sent to a neurologist. I believe that there is very little deviation from the above. Good luck in following up on your apnea! jnj@spamcop.net


James' May 13 reply to Alexandra's May 5, 2004 - Hi Alexandra, I've found that if I take my meds with food there's a good likelihood I'll feel nauseous. I now take furosemide, Cozaar, and Coreg on an empty stomach in the morning and have suffered no ill effects at all. I usually eat about an hour or two later and I do try to eat something small before the evening dose of Coreg. For what it's worth. jnj@spamcop.net
 
Jon's note: Taking Coreg on an empty stomach does affect the drug's rate of absorption, thus its effect.


Vicki, May 13, 2004 - Hi, I haven't posted for a long time. I was wondering if there is anyone having similar experiences to ours. My family is being researched by the Victor Chang Reseach Centre in Australia. My brother has just gone on the heart transplant list.I have HCM and my son had HCM. They believe that my son had HCM - he died at age 19. My nephew has ARVD aged 15 years. My grandson had an echo and they found he had thickening in the septum between the right and left ventricles; he is almost 10 years of age. They are trying to trace it all back to ARVD. Does anybody out there have any info on why they would do that? They are not sure what type my brother has and I was diagnosed with DCM. Vicki. art_vic_payne@yahoo.com.au


Valerie R's May 13 reply to Roger's May 12, 2004 - Hi, For a change from oil and vinegar alone, try what is called Basic Salad Dressing II from the American Heart Association:

Shake and store in fridge. According to the AHA, it has zero sodium. :-) I find it convenient to use oil and vinegar when dining out. Most places have it, and I don't need to carry my own. vgrogers@aol.com


Roger G's May 13 reply to Maggie R's May 11, 2004 - Hi, Regarding air travel, take in hand your meds and prescriptions, and a few extra days meds; water; low-sodium snacks to eat on the plane in case you get stuck on the plane for a few hours. Order a low-sodium or vegetarian meal prior to the flight. They will serve special meals, if they are serving, that is. Travel is easy. You only need to plan for your needs differently than when we were different. rogergthree@earthlink.net


Tom Campbell, May 13, 2004 - Hi all, For reasons of manner and lack of results, I have not been happy with my cardiologist and the nurse practitioner I've been seeing since diagnosis (idiopathic DCM) 14 months ago. I did some research and found a medical school professor and cardiologist who specializes in CHF. I saw him yesterday and he said he thinks my DCM is not idiopathic but is related to my mild diabetes.
     He made major changes in my meds, including changing the oral diabetes drug I have been taking and weaning me off Coreg altogether; he thinks some people just don't tolerate beta-blockers and that may be the cause of my continuing symptoms. I was impressed and I think I'm going to switch to his care, but wanted to run this by the group, especially the part about going off Coreg. tomcam333@comcast.net


Myrtle C's May 13 reply to Elizabeth's May 12, 2004 - Hi, Thanks for the link to that Coreg information. I did find the information hidden in all this that Coreg can increase depression. Doctors just aren't aware of many of the side effects of the meds they prescribe or they don't want to inform patients. They think if they mention the side effects, patients will believe they have them. If I had read Jon's page on Coreg I would have been more careful about raising the dose. Now I am off it and will see what happens next. It did help with SOB and chest pain (angina). Thanks again.
     I do warn patients not to start 2 meds at the same time if possible. If a side effect occurs, you will be more likely to know which med is the problem starting them one at a time. omieof3@yahoo.com
 
Jon's note: That's good advice.


Cary Deen, May 13, 2004 - Hi, I posted a short time ago regarding numbness on the bottoms of my feet. Peripheral neuropathy due to diabetes was a concern. I had glucose checks before and all were good. My PCP checked my glucose level again and it was good; it registered 80.
     I went to a podiatrist to see if he had any thoughts regarding the numbness on the bottoms of my feet. I told him I had CHF and also what medications I was taking. He left the examining room and came back with what appeared to be a small orange device. I didn't know what it was. He said, "Tell me if you can feel this." Remember that I have been stuck, probed and whatever, in various tests since being diagnosed with CHF. I asked the podiatrist, "What is it that you want to do? What is that?" His response was, "I'm your doctor and you'll do as I say!" I said, "Excuse me but you work for me, now what is it that you want to do? I can ask and I'm asking." He looked at me and responded by saying, "This was a soft flexible device that measures by grams the sensitivity to touch on the bottoms of your feet."
     He performed his tests. I explained to him I had CHF and that some CHF patients I have spoken with have lost feelings in their hands and feet due to lack of oxygen in the blood. He emphatically said that this was not possible. Again, I told him I knew otherwise because I have spoken with patients who have CHF. Now get this - he wants to send me to a rehabilitation center because they have a device which they put on your feet that somehow draws oxygen from your blood so that you lose the numbness. He contradicted himself. Go figure. I am scheduled to see a CHF specialist next week. I found the doctor in the listings that Jon has on this fantastic web site. Thanks again, Jon.
     It is important to let doctors know that we will ask questions and we will not do as they say just because they are doctors. We have the final say so. Find a doctor who will answer your questions until you are satisfied. I hope this helps somebody. Take care. cdeen10@bellsouth.net


Jon, May 14, 2004 - Hi everyone, Well, once again here's Jon's quote for the day: "In war there is much to be said for magnanimity in victory. But not before victory." Margaret Thatcher Jon.


Roger G's May 14 reply to Cary Deen's May 13, 2004 - Here, Here! They work for us! Ask all the questions so they can contradict themselves, then ask them what they said again, It is time for us to stop letting them just take the insurance money along with our copay. I bet if we crack down on that, we will see our costs go down too. I also hope you get feeling back in your feet. I have lost it in my hands and feet from time to time. My right leg goes numb and doctors just blow it off as low blood pressure. Oh well, part of the teritory. I laugh and make the most of it. rogergthree@earthlink.net


Linda O's May 14 reply to Cary Deen's May 13, 2004 - Hi, I was interested in your reference to a machine that would help numbness in the limbs. Would this also work for numbness in the hands? My husband has had the discs in his neck repaired and his hands were numb before the surgery and are still that way. Is this on the up and up? Did you feel that he was sincere about this? Linda Oline, age 64, EF 25%. lnoline@hotmail.com


Roger G's May 14 reply to Tom Campbell's May 13, 2004 - Hey buddy, I don't tolerate Coreg as well as I would like either. It makes me ill sometimes. I have backed off it by taking 25mg and breaking it in half for breakfast/lunch and another half for supper/bedtime, which is 12.5mg 4 times a day. That seemed to help and my cardiologist said it was okay. In fact, even better than taking 25mg only twice per day due to the half life of the med. Since you have conflicting opinions, perhaps a third opinion would help. I wish you a long life and improvement if it is possible. rogergthree@earthlink.net


Valerie R, May 14, 2004 - Hi Everyone, I want to ask if any of you have traveled with an ICD/pacer. I have a Medtronic device and cannot be wanded with a security scanner wand. I have a feeling it will be difficult for me to get out of Miami International Airport. I would really be interested in anyone else's experience. Thanks. vgrogers@aol.com


Robert, May 14, 2004 - Hi, Does, or has, anyone else had difficulty breathing on an ACE inhibitor or ARB? It's not pulmonary edema but on those meds I can't get a full breath. I called Merck about Vasotec and they did admit it can be a side effect. I don't have the cough, just the breathing difficulty. hawkdog86@aol.com


Lori K, May 14, 2004 - Hi, I was wondering if anyone out there is on diuretics just 2 days a week, and how it is working for you. My CHF doc is thinking about trying this with me. I am only on a beta-blocker and an ACE inhibitor but I have belly bloat and have had a 6 pound weight gain in the last few weeks. I then developed some chest pain, SOB and have just felt generally yucky, as my 5 year old says. I also take a low dose of prednisone daily for adrenal insufficiency and I am sure that is probably the culprit. Thanks for the help. Lori K. thegoof86d@aol.com


Lori K's May 14 reply to James' May 13, 2004 - Okay James, After hearing about your fantastic recipes, would you be so kind as to share your Chinese Stir Fry recipe with us? Maybe you could join the Food Network TV station and start a low-sodium show, or publish a book. Many low-sodium books out there leave something to be desired! Thanks, Lori. thegoof86d@aol.com


Bill, May 14, 2004 - Howdy all, I am joining this forum as it is the most suited for my ills. I am diabetic, just out of the hospital from a bleeding ulcer (second one) and while in the emergency room getting blood I had a heart attack. I am scheduled for angiogram (cath) June 1. This was my second heart attack. Last time I had bypass surgery and it has kept me working for 20 years.
     I now have CHF and as far as I can tell, it is the lead disease now. I have all the symptoms listed in The Manual as class 3, stage C. I am age 73 and worked till last year. I have taken the first step and have thrown (gently) out all my salt shakers.
     I was feeling quite well for 2 days and wrote the cardiologist that I wanted to postpone my cath. However, today I am worse by far and will keep the appointment. I don't want another bypass and the cardiologist was thinking stents, but I get so weak they have to set back the date. I have blood pressure of 92/50 on 2 pee pills. I will be reading everyone else's experiences. Thanks. Bill. wmowens@pacinfo.com


Sandra Hines, May 14, 2004 - Hi, I have a question. My 81 year old father has been diagnosed with heart disease, which has turned into decompensated congestive heart failure. He also has chronic kidney disease. His blood work shows he is anemic, with hemoglobinat 11.4 and hematocrit of 35.5. The anemia is caused from lack of red blood cells being produced by the hormone EPO.
     Have any of you experienced anemia and did your heart doctor treat it? If they didn't, why not? I've read a lot about this condition not being treated and that studies have shown it is beneficial for the patient to have it treated. Hiness@forestry.state.al.us


Roger's May 15 reply to Lori K's May 14, 2004 - Hi, When I first started, I took Lasix every day and after awhile I went to Monday-Wednesday-Friday. Now the doooor says I know when I need it so I just need it once a week or every other week. I get a free hand at it since the doctor says I know my body better than anyone else. Of course, they monitor my blood all along for the sodium, potassium, sugar and all the rest of the stuff they check. It is working out great this way. rkharmony@highstream.net


Jack D's May 15 reply to Lori K's May 14, 2004 - Hi Lori, A low-sodium diet and low-sodium recipes are the simplest thing in the world. Don't buy any processed foods. Cook with only fresh meats, fish and vegetables. Use only spices - not "seasonings." For breads and stuff, read the labels. Remember that sausage, bacon and anything that looks like a hot dog is actually salt disguised as food. Forget about most condiments. maddjak@hotmail.com


Lori K's May 15 reply to Sandra Hines' May 14, 2004 - Hi Sandra, Your husband most likely would benefit greatly from going on Epo. I worked for the company who manufactured the drug for many years, and dealt directly with dialysis centers. Usually, end-stage kidney disease patients are on EPO anyway due to anemia from their kidney disease. Many of the patients had heart disease as well. Any local pharmacy can answer questions you might have about this and of course, your husband's nephrologist or cardiologist too. It takes about 4 to 6 weeks to really feel the benefits of the injections because that's how long it takes to form new red blood cells. So you need to know that. He may feel a lot more energy from taking it. I wish you the best of luck. Lori K. thegoof86d@aol.com


Jon, May 15, 2004 - Hi everybody, Here's Jon's quote for the day: "We are interested in others when they are interested in us." Publius Syrus Jon.


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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