The paperwork never ends The Archives
July 16-31, 2006 Archive Index CHFpatients.com

Lowell P's 7-16 reply to Carol G's 7-14     mm2 results
 
Terri H 7-16     seek similar experiences
 
Mary C 7-16     how should I take potassium?
 
Peg A 7-17     after weight loss, should meds be reduced?
 
Jon's 7-17 reply to Peg A's 7-17     weight loss and meds
 
Rick W 7-17     history, update, getting stem cell therapy now
 
LaDell M 7-18     seek stem cell therapy experiences
 
Connie R 7-20     seek knee replacement experiences
 
Kenny Q's 7-21 reply to Rebecca J's 6-30     cancer/chemo experience, very confusing
 
Connie R 7-21     seek knee replacement experiences
 
Tom S 7-21     ICD/BiV pacer experiences
 
Tom S 7-21     ICD/BiV pacer experience
 
Jim's 7-21 reply to Connie R's 7-20     knee replacement experience
 
Karoly K 7-21     seek Mountain View, California CHF doc
 
Karen S 7-21     seek camping, elevation advice
 
Diana D 7-21     seek London CHF trials
 
Jim C 7-22     should Coreg dose go up? & more
 
Jon's 7-22 reply to Jim C's 7-22     Coreg dose and more
 
Jim C's 7-23 reply to Jon's 7-22     Coreg dose and more
 
Steve H's 7-23 reply to Jon's 7-22     my opinion
 
Steve H's 7-23 reply to Jon's 7-22     my opinion, part 2
 
Mary C's 7-23 reply to Karoly K's 7-21     getting a HF doctor & more
 
Karoly K 7-23     getting a HF doctor
 
Mary C's 7-23 reply to Karen S' 7-21     traveling with heart failure
 
Catherine K 7-23     seek advice on husband drinking with CHF
 
Mary C's 7-23 reply to Catherine K's 7-23     husband's drinking
 
Karen S' 7-23 reply to Mary C's 7-23     vacations with heart failure, thank you
 
Anita S' 7-23 reply to Steve H's 7-23     the web site has really helped us
 
Karen K's 7-23 reply to Steve H's 7-23     each person uses the info in synch with their doc
 
Patrick 7-23     seek info on statin drugs
 
Jon's 7-23 reply to Patrick's 7-23     statin drugs
 
Lynda 7-24     treating a cold, choosing doctors & more
 
David W's 7-24 reply to Patrick's 7-23     statin drugs, device implant experience
 
Larry T's 7-24 reply to Patrick's 7-23     statin drug experience
 
Jack S 7-25     orthostatic intolerance
 
Kathy H 7-25     how do I tell doc no, to cholesterol drugs?
 
Gene M 7-27     seek sources for American Heritage cheese
 
Amelia S 7-27     seek experiences with mitral valve calcification & leakage
 
Tom D 7-27     seek ideas on peripheral neuropathy pain in feet
 
David W 7-27     info on Medicare drug plan
 
David W's 7-27 reply to Kathy H's 7-25     adding new drugs to our therapy
 
Jack D's 7-27 reply to Kathy H's 7-25     adding new drugs to our therapy
 
Paul D's 7-27 reply to Kathy H's 7-25     adding new drugs to our therapy
 
Lowell P 7-27     questions on blood pressure and diuretics
 
Jon's 7-27 reply to Lowell P's 7-27     blood pressure and diuretics
 
Jeff S 7-27     questions about supplements for heart function
 
Tom S 7-28     costs for device implant
 
Jon's 7-28 reply to Tom S' 7-28     costs for device implant
 
Ben B's 7-28 reply to Patrick's 7-23     statin drugs good aspects
 
Jon's 7-28 reply to Ben B's 7-28     statin drugs
 
Kitt M 7-28     seek South Bend, Indiana CHF doc
 
Kathy H 7-28     thanks for all the replies
 
Kelly W 7-28     what is end-stage heart failure?
 
Norman L 7-28     seek BiV pacer experiences
 
Martha W 7-28     doctor says ICD, I don't know
 
Jack D's 7-28 reply to Jon's 7-28     drawback to statin use
 
Martha W's 7-28 reply to Lowell P's 7-27     scheduling furosemide so it works
 
Gene M 7-30     Mr. Spice company makes low sodium condiments
 
Debra S 7-30     statins' side effect
 
Sandy N's 7-28 reply to Martha W's 7-28     different doctors do things differently
 
Jon's 7-30 reply to Sandy N's 7-28     different doctors do things differently
 
Roger H's 7-30 reply to Lowell P's 7-27     blood pressure and Lasix experiences
 


Lowell P's July 16 reply to Carol G's July 14, 2006 - Hi Carol, About your question about the one-way dimension of a ventricle if the dimension is given as the square - the square root of that number will give the one-way direction. Therefore the dimension of something 36mm squared is 6 mm but this is assuming that the thing being measured is equal in all directions, which isn't likely. My echos show the ventricle dimension in mm not mm2. Lpepper3m@aol.com


Terri H, July 16, 2006 - Hi all, What a great site! I am a 40 year old female. Three years ago my EF was 45%; in April it was 35% by echo. My cardiologist transferred me to a HF specialist who ordered a MUGA with first pass scan, thinking biventricular failure. The MUGA results (with first scan pass) show an increased EF of 53% due to the medication. My RVEF is 27% (Jon's note : Lower limit of normal RVEF is about 40%). Any thoughts on why they would be so far off?
     This is all from the cardiac nurse. The HF specialist is checking the results herself and will call me on Monday to discuss future plans. They are going through the fun process of increasing my meds. I am currently taking 10mg Lipitor, 80mg Diovan AM and 160mg Diovan PM, 50mg Toprol-XL AM/100mg Toprol-XL PM. They up something every 2 to 4 weeks.
     Depending on the results of the MUGA she was going to decide if I needed a heart biopsy and I am guessing that will be happening soon now. My father had cardiomyopathy and a heart transplant at age 39 in 1985. His body rejected the donor heart at 44. They want to do some sort of genetic testing now too.
     Basically I guess I am looking to see if anyone has been here and what I might expect next. Thanks, Terri H. trng4tri2@sbcglobal.net


Mary C, July 16, 2006 - Hi, There have been reports of intestinal and gastric ulcers and bleeding associated with use of slow-release potassium chloride medications. My research is showing we should only take potassium chloride in liquid or effervescent forms. So now I am really confused. Which is the best form of potassium to take? The one I am taking makes my stomach hurt and I have a history of diverticulitis but if I don't take it I get a heart rate of 109 bpm then 59 bpm, back and forth until it settles at 109 bpm. So before I talk to my doctor about a change, I need to know what to ask for. I am taking potassium chloride at 10 mEq in capsule form. I have just started, after being on a diurectic for over 7 months. Any ideas? mhcarrs@aol.com
 
Jon's note: I have only seen reports of this in 2 cases. One where the dose was incredibly high in trials (96 mEq daily) and second, when the heart was so enlarged the atrium compressed the esophagus. The current microencapsulated slow-release pills are generally very safe. If your blood testing shows that potassium is required and if one form upsets your stomach, ask your doc to try you on another form.


Peg A, July 17, 2006 - Hi, I am new to this discussion board and appreciate all the information I have discovered here. My husband was diagnosed in March with heart failure. He was in the hospital for 11 days in April and was sent home on 4/22/2006. I think we have a good heart failure specialist, but am still on the fence about that.
     My question is this: Since leaving the hospital in April, my husband has lost 30 pounds. That gives him a total weight loss of 80 pounds since January. Shouldn't the HFS adjust my husband's medications as a result of the additional 30 pound weight loss? Thank you for your assistance and God bless all of you. palbertson@arl.thelandlawyers.com


Jon's July 17 reply to Peg A's July 17, 2006 - Hi Peg, Assuming this is weight he needed to lose, the answer really depends on his meds and current condition and symptoms. Can you give a bit more information? For instance, in trials, at the same dose, blood levels of Coreg in elderly people were 50% higher than in younger people. However, symptoms and health were not noticeably affected by this difference. Have your husband's symptoms changed for the worse, with a drug suspected as the cause? How about his blood tests? Jon.


Rick W, July 17, 2006 - Hi all and Jon, I have applied for inclusion in an autologous (my own) stem cell study at Caritas St Elizabeth's Medical Center in Boston. First a little background:
     I had my first MI in 1975 at age 27. Luckily, when I went to my HMO, my own doctor was not in and another doctor had me admitted to the hospital next door for tests. My second MI was in 1982. During a subsequent catheterization I went into V-fib requiring a good zapping with the paddles. All I could say was, "OOOCH!"
     The diagnosis led to scheduling a triple CABG in a month but during discharge and for the rest of that afternoon I experienced excruciating chest pain. At discharge the resident and my then regular doctor thought it was gastritis. After drinking two bottles of Mylanta and eating a full bottle of nitro I forced my wife to call a rescue. My coronary arteries were spasming against the already severe blockages. At my sugestion, fast acting niphediphine was given to me sublingually when no one in the pharmacy responded to the emergency room cardiologist's order for IV nitro immediately. A balloon pump was inserted and an emergency bypass was performed the next day.
     For 14 years everything was going my way. I got promotions at work and in 1986 started my own business while supporting my wife's higher education. In 1996 I had another MI. The cath found that my grafts had failed and another CABG on 5 vessels was performed this time using the mammary artery. After that MI, I started to exhibit symptoms of CHF which went unrecognized: edema, fatigue, legarthy, you all know the routine, as well as a "fog" in the brain. I asked my PCP for an antidepressant telling him, "I earned this depression." He agreed and I started on Zoloft at 50mg per day. I cut back at work until in 2002 my heart decided to skip every other beat, bigeminy. Even a conversation would cause me to become short of breath.
     My PCP referred me to a cardiologist who diagnosed ischemic CHF. I was and had been on naldolol for a long time and he added the rest of the mix - lisinopril and Lasix. I was qualified for an ICD and one was implanted in November of 2002. I talked the electrocardiologist and factory rep into attempting to pace me out of the bigeminy. Although the ECP said the ICD would not help, thankfully it worked and I was and am able to function moderately well.
     Two years ago February I had another MI and cath. The cardiologist was present to place any stents that might be indicated. A few minutes into the proceedure he stated, "There is nothing I can do here" as he rapidly exited the lab, leaving myself and a cath tech (MD) stunned. I would have, but with a hole in my femoral artery I could not, get up and chase him down!
     I fired him the next morning and checked out of the hospital to find a new cardiologist. It seems that three of the four veinous grafts placed in 1996 had occluded (blocked) leaving one veinous and the mammary artery open. My cardiac arteries other than those two have collapsed leaving the prospect for another CABG off the table. I have been on the transplant watch list (whatever that is) in case one or the other occludes too. I think they call that, "we won't go there."
     Ergo, stem cell therapy. I think they may be the answer for many of us although I do not approve of the use of fetal stem cells for any purpose. I have my own and hope to use them. Wish me luck! Rick. rjw7798@aol.com


LaDell M, July 18, 2006 - Hello, I have CHF and have just completed the EECP treatment. I am also interested in the stem cell research just mentioned. Has anyone participated in this? What type results have you had? Any info would be greatly appreciated. LaDell. ladellm8989@hughes.net


Connie R, July 20, 2006 - Hi, I have had heart failure for 10 years. I am considering having both my knees replaced. I am wondering if anyone has done this and how did you recover? The thing I am worried about the most is the intense fatigue that I feel. How is that overcome in order to walk as much as you need to do to heal? crussell@uga.edu


Kenny Q's July 21 reply to Rebbeca J's June 30, 2006 - Hi, I am having big time breathing probelms. I am a 9 year cancer survior (NHL). Large does of adriamycin over a 6-month period, plus 33 radation treatments were part of my cancer treatment. This started slowly, but about 6 months ago it came on like gangbusters.
     I am now learning why my ankles are always swollen, feet are numb, why I have trouble breathing when lying down, some memory loss and more. I'm going to be age 63 soon and would like to retire. Now I am so confused about insurance if I do. No one can say if it is going to continue to get worse. I have my oncology doctor and my cardiologist, my primary care doctor and pulmonary doctor involved. I am still trying understand it all. Thanks for listening. Kenny. kfquick@cfl.rr.com


Connie R, July 21, 2006 - I have had heart failure for 10 years. I am considering having both my knees replaced. I am wondering if anyone has done this and how did you recover? The thing I am worried about the most is the intense fatigue that I feel. How is that overcome in order to walk as much as you need to do to heal? crussell@uga.edu


Tom S, July 21, 2006 - Hi everyone, My BiV/ICD implant continues to chug along with a notable improvement in my overall condition. I am off the supplemental oxygen most of the day and only need it on occasion. My stamina is higher and the fatigue level is lower. Last week I had a "tune-upquot; and they increased the "zappage" so that my heart would pump with a little force. I found out that it works pretty well because at times, when I lie on my left side, I felt a really strong beat. At first I thought it was gas bubbles tyring to find the escape hatch, but they were too regular to have been those little stinkers. The force of the beat was almost annoying and is much stronger than I ever felt before, even when my heart was compressed into my lung and esophagus last year requiring hospitalization.
     I noticed an increase in stamina early this week when I avoided an automobile accident in my van by clugging it out with a curb. The right front tire on my van was the loser and I was in a location that required myself and my 16 year old daughter to change the tire ourselves. Despite the 90+ degree temperatures and full southern sun I accomplished the task with little or no noticeable fatigue. Two months ago I probably would not have been able to lift the jack, let alone the tires.
     The near accident was a blessing in disguise and I suppose I should thank the little punk that pulled out in front of me blocking two lanes on a five lane highway resulting in the near miss and flat tire. I had the front end of the van aligned and the steering has improved dramatically, and a strange metallic noise has disappeared. bigheart@muchomail.com


Tom S, July 21, 2006 - Hi all, One of the most dramatic changes I have noticed with the Biv/ICD implant was a rapid weight loss of over 40 lbs in the first 2 months. The only thing I can really attribute the weight loss to is the more efficient pumping of the heart of fluids through the kidneys and other vital filtering organs. bigheart@muchomail.com


Jim's July 21 Connie R's July 20, 2006 - Hi, I have cardiomyopathy and had both my knees replaced a little more than a year ago. My surgeon would not operate until the cardiologist he works with said I could go through with it. I had absolutely no trouble. At the hospital, they monitored my heart constantly. All through the recovery and physical therapy, the problem is not becoming exhausted, it is just getting your legs moving again.
     At no time did I have any heart related problems, but admittedly my cardiomyopathy is mild at this point. I wouldn't have had the surgery had not my cardiologist given me the green light. Now more than a year later, my knees are better than the ones I was born with. I can do just about anything with them. So if your heart can take it, I think you will find that the surgery is one of the best things you've ever done for yourself.
     Tip: Get a surgeon in a medical center who does a lot of knee replacements. My guy does more than anybody in the world, like 1,500 a year. jimoran@aol.com


Karoly K, July 21, 2006 - Hi all, First, all my gratitude to Jon for doing this site! Quick intro: I'm a 45 year old male and I have just realized in recent days how serious CHF is. I was told back in January after a high blood pressure scare at a hospital that I was in heart failure.
     Later in March, I was stented and ballooned because CAD was discovered as well. However, my cardiologist didn't explain the nature of CHF and up until a few days ago I was still trying to cope with CAD and its implications. Then I came accross an article that mentioned that I may have less than 5 years left since I've got CHF. I don't have to tell any of you what this does to a person. I am on the verge of crying every night.
     So I'm taking my Coreg/Diovan/Plavix/Lipitor cocktail, along with some multi-vitamins and Coq10. I don't have any serious symptoms, I don't think. My blood pressure is creeping up again, though. I'm still trying to get the diet and exercise routine down. Unfortunately, most of my private time is spent on feeling self-pity and doom. Also, I don't know which form of CHF I have, but my EF wasn't too bad, if I recall, it was around 65%, during one those tests.
     Now, here is what I'm after - I live in the San Francisco Bay area and having just realized the situation I'm in, I'm looking for a CHF clinic or specialist around the Penninsula area. I live in Mountain View, work in Redwood Shores, so I was thinking Stanford or perhaps Sequoia. My 'current cardio doc is in Los Gatos and it's kinda far and out of the way. My cath was at Samaritan. Thanks in advance for any advice! Karoly. bit1-sick@usa.net


Karen S, July 21, 2006 - Hello All, I need some advice. I am going on my first camping trip since my CHF diagnosis. I am going for 12 days that will be in a hot (95+ degrees F) environment, elevation around 2500 feet above sea level. Do you have any advice or experience on the best way to keep hydrated while keeping in line with my fluid restriction. My doc said okay to drink extra, but to closely monitor my weight and swelling. My EF is now up to 25% from 15%. :-) Thanks, Karen. cowgirl94952@yahoo.com


Diana D, July 21, 2006 - Hi, I'm new to this board, so hello to you all. Would anyone know of any London ongoing patient trials for those who have heart failure? I find that the patient trial web sites are not always that easy to locate a particular type of trial. Thanks in advance of any information. melody916-@tiscali.co.uk


Jim C, July 22, 2006 - Hi Jon, I am 46 and was diagnosed will cardiomyopathy last fall. I am on a dose of 6.25 mg twice a day of Coreg and my EF went from 20 to 35% in three months. My cardiologist raised my dosage to 12.5 mg twice a day in April, and plans to raise it again this month to the optimal dose of 25 mg twice a day. I am concerned because the changed dose is not a response to any tests. In fact, he does not plan to do another ultrasound until next February. On the current dose, I am doing so well, I am reluctant to fiddle with things for no reason.
     I do not know what my EF is. As I said, in March it was 35% but I bike 100 kilometers (60 miles) a week. I work full time and I do pushups, weights and crunches every day. I am more fit than I have been in years. The other day, I climbed to the 16th floor of a building and down in 4.5 minutes. Except for tiredness from time to time, I feel great. I've got muscles - my chest is bigger and my waist is smaller.
     Would it be reasonable for me to communicate my reluctance to change my dosage to my cardiologist? I also feel like he is a little hands-off. Even though I have been using Lasix, the last time I saw him in April, he did not perform tests to see how my kidneys are doing. He does not plan to perform any monitoring until next February, but he instructed me to call if my symptoms get worse. Perhaps he feels that I am doing well enough to not require close monitoring, but I would like to have tests to see how my kidneys are doing on Lasix (40mg once a day), and I am not sure about changing my dose of Coreg without an ultrasound. I am also on Vasotec. Thanks, Jon. electricmousetrap@hotmail.com


Jon's July 22 reply to Jim C's July 22, 2006 - Hi Jim, You should have regular blood testing (every 3 months is standard practice) for your blood potassium levels (in fact, all electrolyte levels) as well as kidney function and blood sugar. Coreg dose should be raised to 12.5mg in everyone who can tolerate it since that is the lowest dose to consistently cause really strong improvement. For instance, if at your current dose, Coreg plus enalapril plus life style changes raised your EF 15% to 35%, why not raise Coreg dose and see if your EF rises further? That's worth a shot, don't you think?
     About your current doc, if he's not giving you regular blood testing, you seriously need to consider another heart failure doc. That's just my opinion, but it's a strong one. Jon.


Jim C's July 23 reply to Jon's July 22, 2006 - Thanks Jon, I will consult a nurse I know about finding another cardiologist. She made the offer last fall, but the hospital had already referred me to one. I will also arrange for the blood testing I require through my general practicioner to ensure that it gets done as soon as possible.
     I realize now that I was not clear in my last message. I am currently on a dose of 12.5 mg twice daily of Coreg and the cardiologist wants to raise it to 25mg after three months without any tests of any kind. I, on the other hand, I am so pleased with how I feel - I am more active than I have been most of my adult life - that I am reluctant to fool around with the dosage for no reason.
     In keeping with your advice, I will co-operate with my current doc and raise the dosage next month, but I will see if I can find a more attentive and meticulous doctor. I am sure I will notice if there are bad effects. I weight 240 pounds, and I expect that I will tolerate the change. Thanks. electricmousetrap@hotmail.com
 
Jon's note: You can read about target doses at chfpatients.com/faq/target_dose.htm. Except for checking blood pressure and heart rate, I don't think tests are usually done before raising Coreg a notch, unless there is a specific problem.


Steve H's July 23 reply to Jon's July 22, 2006 - Congratulations on graduating from medical school, Jon. I assume you went because recently you informed me you weren't a doctor but now you are prescribing what doseage a person should take to get better results. Did you even read the post you responded to? He is already taking 12.5 mg twice a day. wwarthog@alltel.net
 
Jon's note: I did misread the dose. It happens. Did you read the statements at the top and bottom of this page?


Steve H's July 23 reply to Jon's July 22, 2006 - I had really thought you got over the diagnosing bit a few years ago but I see it is back. Don't worry about e-mailing me as I see there is no further use to try getting on the board to help anyone else. Besides my doctor doesn't like me to get excited so it is best if I don't see what medical advice you are giving next. wwarthog@alltel.net


Mary C's July 23 reply to Karoly K's July 21, 2006 - Hi, The right doctor depends on what form of CHF you have. At Stanford, I heard some good stuff about Dr. Michael Fowler. At UCSF, I heard some good stuff about Dr. Rame and Dr. Grossman. On the list of best hospitals in the US, 14 hospitals made the list with Cleveland Clinic supposedly the best in cardiac care. On this site, you can read about Dr. Silver (bottom of the page). UCSF and Stanford made the list also but I am not sure in what catagory.
     However, like Jon says, don't go so much on reputation as much as actual experience. With a high EF of 65% you might have diastolic heart failure; I would lean towards UCSF. Dr. Grossman wrote the textbook on how to treat DHF, this textbook is used to train young cardiologists. Find out what kind of heart failure you have and go on from there.
     Also, the 5-year window was created during a time when we didn't have all the new heart meds. So I have found the 5 year thing not a real threat, as much as not following the things to do to keep yourself healthy. Self care is more important than the 5 year thing. Most of the people on this board who take good care of themselves have broken this statistic. Jon, for instance, is going on 13 years post-diagnosis.
     Good luck. Read The Manual. It will give you a fighting chance. I just received the news recently also. Take care. mhcarrs@aol.com


Karoly K, July 23, 2006 - Hello, I've just realized what a boob I am. I discovered from the "Find a heart specialist in your area" link on the the front page that I have at least 2 CHF centers close to me here. One is Stanford, the other is in San Francisco. I guess I was not really reading the list the first time. My apologies! bit1-sick@usa.net


Mary C's July 23 reply to Karen S' July 21, 2006 - Hi Karen, I have a hard time keeping myself hydrated in 100+ degree F weather in a air conditioned house without swelling. CHF and the meds I take make hot weather unbearable. Your EF is really low. Can you take the high temperatures? Can you handle the high elevation? Are you short of breath? The hotter it is, the less you will be able to handle hot temperatures at a high elevation. Can you wait until it cools off a bit to go camping, like in the fall or early spring?
     The way I see it you are going to have three things to deal with: Elevation, heat and less oxygen. So if you go camping during a cooler time you may have a healther, happier experience. If it were me I wouldn't go but I am going to the coast next week. I will be staying in a air conditioned motel room and I know of several hospitals nearby. I have learned to vacation carefully. My motel will have a kitchen so I can cook from scratch so my diet won't go against me.
     Someone in my family gifted me the trip. Since it is 100+ degrees F in town, they wanted me to go where it was cooler for awhile. I am taking with me a hospital ER list, my doctors' phone numbers, my foods, and so on. To make sure I don't come back is worse shape I also have rest periods set up and exercise periods. I have preplanned my trip so that I can have fun, yet not end up in worse shape. mhcarrs@aol.com


Catherine K, July 23, 2006 - Hi, I just needed someone to talk to. My husband found out he had CHF in January of 2003, he was really sick. I had to take him to the emergency room. He was put in the hospital in CCU, anyway he was in the hospital about 2 weeks. They said he had CHF and cardiomyopathy. He also had an elevated liver function test result and deep venous thrombosis. He drank one to 2 six-packs a day for at least 15 years (long history of alcohol abuse). His doctors said alcohol abuse was a big factor. He smoked but quit about 8 or 9 years ago and went to dipping. He started dipping again about a year ago.
     Now after 3-1/2 years he has started drinking again. He told me he wasn't going to get like he did before, he was just going to have a beer once in awhile. Well, that has been about a month ago and now it is getting more regular and up to a six-pack at a time. I am so torn up about it I don't know what to do. I've tried talking to him but it doesn't do any good. He has not been drinking at the house. Now he says if he wants a beer he'll bring it home and drink it and if I can't handle it, to leave.
     When he went to the doctor over a month ago they gave him a good report. He had lost 11 lbs. Am I wrong to worry? Should I just sit back and not say anything? He acts like it's not going to hurt his health or make him worse. He takes Lisinopril at 5mg, spironolactone at 25mg, Lanoxin at 0.25mg and metoprolol at 50mg. He is supposed to be on a low salt diet that he does most of the time.
     I need some advice. I love him and want to do what is right. Please help. Thanks. is4mygrandkids@yahoo.com


Mary C's July 23 reply to Catherine K's July 23, 2006 - Hi Catherine, I grew up in a alcoholic home. You need to go to an AA meeting for family. I forgot what they are called. They will help you help him and teach you how to live with him. My alcoholic home was really awful. I saw my Dad kill himself drinking and smoking. So I had to learn how to take care of myself. The program will help you not feel so helpless. mhcarrs@aol.com


Karen S' July 23 reply to Mary C's July 23, 2006 - Hi Mary, Thanks for the advice. Right now thanks to the meds, my BiV pacer and watching my diet, I am not short of breath. The weather in the San Francisco Bay area is setting record heat and I seem to be doing well. My adopted dad will be bringing his fifth-wheel on the trip and it has air conditioning, plus he is getting me one of those misting tents. The camping site is on a river. Since this is an annual family reunion, I'll just have to go slow and easy. I appreciate the feedback, Mary, thank you! :-) Have fun on your vacation! cowgirl94952@yahoo.com


Anita S' July 23 reply to Steve H's July 23, 2006 - Hi, It's too bad that Steve felt that he didn't get the help he needed on this site. It will be his loss. He must have not been paying attention to the disclaimer you put on the site's pages. I guess you can't please everyone.
     Phil and I know that the information on this site will help everyone if they will read it. Of course, each person should ask their doctor what he or she thinks. We know that this site has helped us many times and has given us the questions to ask the doctor, especially since Phil has started insulin now.
     Phil and I really appreciate the time you spend keeping us informed. No other site has this much information. Thank you, Jon, for helping all of us. Take care, Anita. dreamersila@netscape.net
 
Jon's note: And thank you for helping support the site - we greatly appreciate it!


Karen K's July 23 reply to Steve H's July 23, 2006 - Hi Steve, I've read and reread the posts in question. I can't help but respond. I am appalled that you think Jon is diagnosing. He merely stated what the recommended dosage is for Coreg and that would be 25 mg twice a day (I believe for heavier people it is 50 mg twice a day.) You can go do a search on Coreg and I'm sure it will come up with much the same "information" Jon shared.
     It was on this site that I first learned of Coreg and it was still in trials then. As soon as I saw it had been approved by the FDA, I downloaded what I could find regarding the drug and took it to my doctor. He actually called one of the researchers who worked on the trials and was told that because my EF was above 30%, he couldn't say how my body would respond to it. I believe I was the first in my hometown to be prescribed the medication as the nurses were instructed to give me a dose and at each dose increase I had to sit in my doctor's office for 30 minutes and have my blood pressure checked.
     Each person must make their own decision as to what they want for their body and their condition. It is essential that each person's doctor be included in the discussion. However, I see no reason to attack Jon the way you did. Karen. karenk@machllink.com


Patrick, July 23, 2006 - Hi all, Are statins really bad? I cannot get Zocor any longer because the new drug program the government forced on me does not cover it. I went online to see what other statins are available so I could ask my provider if they cover any of them. I found an interesting web site and according to it statins are killers and they deplete our bodies of Coenzyme Q10. Is this true Jon? There is a lot of info to read at www.mercola.com/article/statins.htm. God bless, Patrick. NarleyHarleyGuy@webtv.net


Jon's July 23 reply to Patrick's July 23, 2006 - Hi Patrick, I would not describe statins as "killers." I do believe they are prescribed to quite a few folks who don't really need them, but if you have seriously high bad cholesterol levels, hey, you have to use a combined approach of exercise, drug therapy, and diet. They do deplete your CoQ10 level - see chfpatients.com/stew/coq10.htm. Personally, if I thought I needed a cholesterol-lowering drug, at this time I would choose Vytorin for myself. Jon.


Lynda, July 24, 2006 - Hello, My husband was diagnosed with cardiomyopathy last year. Everything was not too bad but he caught a cold. I got it too, with a pretty bad cough. I could not sleep for several nights. I am scared he has the same but I could use steam inhalation, medicine, other stuff for the treatment; what he can use? He cannot even drink a lot of hot tea. How to treat it?
     We did not a have primary doctor, the cardiologist's appointment is only on Tuesday and I am not sure if we should wait until Tuesday. Please suggest what would be the best treament, or should I find another PCP? The problem with the previous PCP was that he discharged my husband from the hospital last fall with all the symptoms of heart failure. My husband was in an emergency room of a different hospital in 4 hours and spent 2 days intubated in ICU. So I cannot trust these doctors and am quite skeptical about other PCPs around here. Thank you, Lynda. jobsearch2004@optonline.net


David W's July 24 reply to Patrick's July 23, 2006 - Hi Patrick, I am not fond of statins. One doc I had put me on lopid and it made me extremely dizzy, so I stopped it and then he put me on Baycol, which they took off the market. I refused any more statin drugs at all. My cholesterol is good anyway after I lost weight. I can't even take lisinopril anymore because it lowers my blood pressure too much. I hate taking additional drugs as it seems like they don't get along with the ones I already take. I make the docs convince me I need a new drug before I take one.
     I have avoided blood thinners too, since I think my blood is already too thin. They say statins are good for you but I won't even try another one myself but it may help others. I had the pacemaker put in this June and now I regret having it done. I felt so good for the first 3 weeks and had lots of energy and it was wonderful; then the darn thing turned on me and poked a hole in my heart and caused me to have open-heart surgery to fix the problem so I would not bleed out and die. Now I have been set back 5 years. I think the pacemaker is still on and they just turned off the ICD, but it is not helping anymore.
     I can't do much of anything anymore and I am a little depressed. It is discouraging to go backward. The docs said I did not do anything wrong and that a cough or a fall caused the ICD to poke my heart. They said the bottom part of my heart is just too thin and weak. The doc said she had never seen such a thin and weak damaged heart. That did not make me feel good at all.
     Enough of my whining. Maybe I will slowly get better again - I just don't know anymore. I am in God's hands and I know He will take care of me. wilsond537@aol.com


Larry T's July 24 reply to Patrick's July 23, 2006 - Hi Patrick, I just had my Zocor (a statin drug) refilled and was suprised to find that there is now a generic called simvastatin. Zocor cost me $30 a month copay but the generic cost me $7. Larry. carolthornton@comcast.net


Jack S July 25, 2006 - Hi all This is my first time at this site and I am looking to see if someone out there is trying to cope with a situation similar to mine. I've had heart problems since 1992, bypasses in 1999, pacer in 2005, and latest is CHF with 30% EF. Standard treatment is salt-free, etc. However I also have Orthstatic intolerance which causes large blood pressure drops. To cope with this I am taking the standard medication for treating this - Midodrine and Florinef. These drugs along with salt build fluids to increase blood pressure about 20 mmHg. I had mild edema before I started them but now my support hose don't control the edema unless I take Lasix. It's a Catch 22 situation. I might add that I have advanced PC and had an orchiectomy in 2004 and take Estraidol, an estrogen, that also causes fluid retention. I have little energy, just enough to praise the Lord. jspringston@carolina.rr.com


Kathy H, July 25, 2006 - Hi, It's been quite awhile since I posted. When I posted last, I was far more concerned about my RA (rheumatoid arthritis) than my cardiomyopathy, saying if I ccouldn't get the RA under control, I wouldn't be around to care about the heart issues. Well, the RA is sort of under control. I am on remicade and Methotrexate, and frankly without the MTX, the Remicade would be like injecting water. Here is my issue.
     At my last cardio checkup, which included a chemical stress test and an echo, my doctor decided he wants me to go on pravachol and Zetia. I do not want to do this. I have been religiously compliant about all my meds. My low sodium diet is pretty good. My heart is doing very well, I have no edema, and nearly no symptoms. My cholesterol levels are borderline high - not horrible, but borderline. I do not drink or smoke. My blood sugar levels are okay. The HDL drugs metabolize in the liver, and my liver reacts to them. When I have elevated liver enzymes, the first thing anyone does is takes me off the MTX.
     I guess I need some support to tell the doctor, "No, I will work on my cholesterol with diet and exercise, not drugs." I am eating oatmeal or Cheerios daily, have cut my consumption of cheese way back, and increased my already good intake of fruits and veggies. What else can I do? If I can't take the MTX I am very nearly wheelchair bound. I can't drive more than 20 miles, and need help with every day activities. With the MTX I am hiking around and doing full time care easily for a 4 year old and a 10 month old. I am able to use the treadmill. I have the kids full time, so I need to be able to pick up and carry a baby and play tents under the dining room table.
     How do I explain that I want to go against what is usually common practice - the cholesterol lowering drugs? kathy_in_wlsv@verizon.net


Gene M, July 27, 2006 - Hi everyone, I just joined the forum. I've been reading some old posts. I'm glad to say that medications and major life style changes have reduced my heart size to normal and my EF is 55%. I have been fanatically following a low sodium diet (high blood pressure). I recently discovered American Heritage Cheese (5 mg of sodium per serving) at my local Albertson's here in Placentia, North Orange County, California. However they have stopped stocking it. I heard that Ralph's also carries it. Does anybody have a lead on where to buy this cheese? gnkm@adelphia.net


Amelia S, July 27, 2006 - Hi everyone, I was wondering if anyone has or had "mitral annular calcification with regurgitation." I have cardiomyopathy and have been in and out of heart failure. I read that with mitral annular calcification that it is an indication of possible blockage of the arteries. Any info on this would be appreciated. My EF was 20 and is 43% now with Toprol-XL, Vasotec, Lasix and Coumadin. amelsaa@aol.com


Tom D, July 27, 2006 - Hi all, I need help. I don't have CHF, but the woman I fell in love with about 16 months ago got diagnosed with it about 5 months into things. I wrote once before because she has severe foot pain and her doctors are not much help. I did a lot of research and finally came up with what it was: ischemic peripheral neuropathy. I had her ask her doctors for Lyrica, but instead they gave her neurontin. The neurontin worked for a couple of days after about 3 wretched weeks of puking and malaise. Then her perscription renewel got lost in the mail and her doctors refused to write another one. Bottom line - she had to go cold turkey off of neurontin.
     Her pain came back double and she already couldn't take the pain before. Now it isn't working at all. Her medical care has been brutally incompetent. Her doctors refer to her feet as being "sore." She doesn't care about her heart and lungs anymore, just wants the pain to go away. She's giving up and I don't know what to do. I live 150 miles from her and can't move near her because of my son. I'm afraid I am going to lose her. If anyone knows anything about dealing with the pain of peripheral neuropathy, please let me know. If you have had it and it went away, please let me know as well. I need to give her hope.
     I should point out that she has been taking thiamine supplements for two months and this has had no noticeable effect. tfdddtz@yahoo.com


David W, July 27, 2006 - Hi, I got a letter two days ago from Medicare saying they put me on a drug program. I got the card yesterday for Wellcare. It sounds like a good program with no monthly fee, no deductible and all generic meds are free and Coreg is covered at $3 a month. I cant believe Medicare did something good for me. They said I have been covered since January 1 but I just found out two days ago. I guess better late than never.
     I go to my PCP tomorrow and will get refills on all my meds and I think all I will lhave to pay is $3 for the Coreg. It seems like a good deal. I don't know if the rest of you can get on this plan or not but you can calll Wellcare PErs Drug Plan at 1-800-550-5252 or use their web site www.wellcarepldp.com. It would not hurt to call or go on line and learn about it.
     I never heard of this plan and was just put on it but it does sound like a good deal. I am slowly getting better. I saw my heart surgeon Monday and she set up an appointment with the pacemaker rep and my cardiologist to reprogram my pacemaker. Maybe that will help. She said the bottom part of my heart is so thin it is not safe to put the lead for the ICD back in it as it would move again causing me problems. My local pharmacy even said they would resubmit what I bought from them to this Wellcare and I might get a refund. I bought a lot of meds in the mail but did buy a lot at this pharmacy too.
     I hope everyone is okay. wilsond537@aol.com


David W's July 27 reply to Kathy H's July 25, 2006 - Hi Kathy, Stick to your guns. I make my docs convince me why I should have any new meds. If there is a good enough reason I will comply but if not, no way. I have added potassium because it is low and I added prevacid because I had a stomach ulcer. I know I need to take these and there are good reasons. I refuse to take blood thinners and statin drugs. My blood is thin and I can easily have another ulcer. If I had been on a blood thinner I may have bled out internally already. My cholesterol is controlled pretty well by a sensible diet. I do eat oats often and lots of fruit and veggies. I think that is enough.
     Sometimes we havae to go with our gut instincts and question the docs. I have learned a good doc won't get mad but if he thinks I need a med, he will convince me. wilsond537@aol.com


Jack D's July 27 reply to Kathy H's July 25, 2006 - Hi Kathy, It's extremely simple. Do just like I did. Say, "I am not going to take those." There is no need to try to explain yourself to him. If he continues, simply ask, "Did you understand what I said?" He is not the school principle, your parent or God's representative on this planet. He is someone you employ! maddjak@hotmail.com
 
Jon's note: Combine the last 2 posts and you get some good advice - good doctors will not get mad, they will persuade, not command. I didn't explain myself to my CHF doc when I turned down a cholesterol-lowering drug, just said I wouldn't take it. I got no flak from him. Don't forget that exercise is one of the best ways to improve lipids.


Paul D's July 27 reply to Kathy H's July 25, 2006 - Hi Kathy, Remember it's your body and you are the boss. You have every right to determine which drugs you are, or are not, willing to take. Explain to the doctor your concern that taking the cholesterol meds would interfere with your RA treatment, and that maintaining your RA under control on a daily basis is more important to you than what you understand the benefits of the cholesterol meds to be.
     The explanation in your post sounds clear enough, and if it doesn't convince your cardio doc, he should have to explain to you why it doesn't, and convince you he is right. You sound like an intelligent patient who is willing to do all the right things to take care of herself, and that deserves respect. You're willing to work on diet and exercise, and that's going to have to be good enough. It's your choice. Good luck. biggerbox@yahoo.com


Lowell P, July 27, 2006 - Hi Jon, I hope this e-mail finds you feeling better than you have been. I read the article about diastolic pressures less than 70 putting a person in a class where mortality is three times that of folks where it is above 70. The CHF doc I saw at the Mayo Clinic in Arizona told me he wanted my blood pressure to be just above feinting. I am taking 100mg Toprol-XL in the AM and 150mg Avapro in the PM. My blood pressure, which I thought was good, has been about 125/65. In order to bring the diastolic up the systolic would come up too and well above the 70 number.
     Another question I have Jon, is about diuretics. I was taking 40mg of Lasix twice a week but for the past month or so I have not taken it at all. I have not gained any weight and don't feel any different. My doc says in spite of this I should continue taking the diuretics. Is there another reason, other than fluid retention, that diuretics would be helpful to my heart? Thanks in advance. Lowell. Lpepper3m@aol.com


Jon's July 27 reply to Lowell P's July 27, 2006 - Hi Lowell, Unfortunately, I've been very sick and am still sleeping 12 to 14 hours a day. Diarrhea, hot and cold flashes, nausea, fatigue, and on and on. Bummer.
     You'll notice in that blood pressure analysis at http://info.chfpatients.com/Blood_pressure-Diastolic_too_low_may_be_harmful.txt, that this only seems to apply to people with coronary artery disease, and that it mentions that if raising diastolic pressure raises systolic pressure to 140 or more, then, the lower pressure should be used as the goal. Please note that this was not a trial nor was it focused on heart failure patients only, so I put the extra warning at the top of the article to be careful how you apply it to your situation. My own CHF doc has kept my diastolic pressure around 60 to 70 for 12 years and I have done well but my CHF is not ischemic.
     No, to my knowledge there is no reason at all to take a loop diuretic unless you retain fluid. Under the title "Jon's Personal Pet Peeves" in my Washington DC medical roundtable presentation, I brought up that diuretics should only be stopped when the symptom stopped (fluid retention). I hope it helps. Jon.


Jeff S, July 27, 2006 - Hi everyone, I am 36 years old. I started having heart problems about a year ago (hereditary). I had 5 bypasses last July, after that I had stents put in and I have recently had an ICD placed. I am on Toprol-XL at 50mg twice a day, Altace at 7.5mg, Zetia and 10mg daily, and Plavix at 75mg. My EF is good since after the bypass. I feel okay and I am having limited physical activity.
     My question concerns supplements. I am currently taking fish oils, but that is it. My doctors do not really recommend any other supplements. I know the common ones are CoQ10, magnesium, and niacin. Can you share your opinions on these in terms of heart functioning? Thank you for yoru advice! Jeff. tphrules@hotmail.com.


Tom S, July 28, 2006 - Hi all, In front of me is a statement from the hospital where I received my ICD/BiV pacer implant. The bottom line - just for the hospital portion - was or rather is $83,285.53. The biggest charges were for "Med/Surg Supplies $60,171.50 and Cardiac Cath Lab (where the procedure was performed) $20,633.44." Top that off with a $4,732 bill for the device and physician services and the total tops out at somewhere near $90,000.
     Just how much more can the medical community get away with charging such exorbitant fees without an outright revolt. We scream when gasoline prices edge up by a few cents and yet we tolerate wholesale extortion by the medical industry, pharmaceutical companies and in some cases the medical profession itself. Then they wonder why an increasing number of hardworking people cannot pay their medical bills or do like I did already, and go into bankruptcy because of them.
     To its credit Medicare (my only insurance) only paid $26,336.25 of the hospital bill and the doctors' bill is still in dispute from what I can tell. After Medicare adjustments I am being billed $1842.62 which will be tough to pay given our current economic condition. When will this upward and largely unwarranted upward spiral of medical costs ever end? To me it seems like a matter of pure greed. bigheart@muchomail.com


Jon's July 28 reply to Tom S' July 28, 2006 - Hi Tom, I'm treading lightly here because I can't give details but my wife is Director in charge of all billing for a major urban hospital system. Her job entails overseeing a staggering amount of money. This means that I know a lot more about hospital costs and why which ones are so high versus those that seem low, than most people - a lot more.
     All I can say is that costs are definitely too high, but be careful who you blame and who you praise. Medicare's low reimbursement ranges in some areas are why hospital costs are so high in many cases. It's a complex issue and like I said, I can't comment publicly on confidential information but while hospitals do indeed make me see red often, I also cut them a lot of slack because I know more about the root causes of some of their problems.
     In fact, I see government agencies like Medicare as more of the problem than hospitals themselves. The amount of money a hospital spends just to comply with seemingly very stupid rules and regulations if they want any payment at all from Medicare and Medicaid blows my mind almost clear out of my skull. Government even times payment requirements in some instances to insure that a hospital cannot respond within the required time due to fiscal year or tax requirements - just so they don't have to pay or can pay less. What other business but hospitals has to put up with this because everybody blaims them instead of the real culprits?
     Please note that I am not calling hospitals blameless by any means. Man, they make me so mad sometimes! They need a lot of changes, just as government rules and regulations do. Jon.


Ben B's July 28 reply to Patrick's July 23, 2006 - Hi, I wanted to at least be one person speaking up for the benefits of statins. Although they are not always appropriate, particularly if your heart disease is not related to CAD, and although the best method is to control cholesterol through diet and exercise, I believe there are sufficient studies over the past 20 years to show the efficacy of these drugs. Here's one example it took me all of one second to find: www.medicinenet.com/script/main/art.asp?articlekey=60464.
     Even if there were not hundreds of specific studies, I would say that just the fact that death due to CAD has decreased so much over the past decade, while obesity has grown, has got to point to the efficacy of medications such as these. For myself, I am not a very good or compliant patient, and I already know I have some 30% plaques in some arteries. I didn't want to risk high cholesterol, and wasn't getting it down myself. Vytorin has reduced my overall cholesterol from around 220 to 153, and my LDL (bad) from around 130 to 85. HDL (good cholesterol) is harder to raise with medications - I have somehow managed to do that by exercising more, but it is still just barely in the acceptable range and I could never get that bad cholesterol down.
     I'm not saying everyone should take them, but when a doctor recommends them they should not be refused out of hand without some consideration. bdbrinkman@juno.com


Jon's July 28 reply to Ben B's July 28, 2006 - Hi Ben, While this thread did not praise statins, I don't think it made them look bad either. I quote from my own post: "I do believe they are prescribed to quite a few folks who don't really need them, but if you have seriously high bad cholesterol levels, hey, you have to use a combined approach of exercise, drug therapy, and diet." I also said that: "Personally, if I thought I needed a cholesterol-lowering drug, at this time I would choose Vytorin for myself." I notice you made the same choice - please note that Vytorin is only half-statin; the other half of the drug works differently - estimibe, which reduces absorption of cholesterol in the small intestine - a completely different action than statins. This allows the amount of statin taken to be much smaller.
     Statins may be necessary for a lot of people and I may end up on one someday, but like the other posters in this thread, I'll make that final decision - not my doctor. I honestly think this thread was more about that than about statins. As patients, we are trained to treat doctors as know-it-alls, but as Jack said, they are not our mommies or our bosses - they are our employees. Therefore they must persuade us of the benefit-versus-risk issues of every medication they prescribe. Sorry to carry on but I wanted to clarify what I saw as the main thrust of the thread in question.
     I should mention though, that statins do reduce CoQ10 blood levels and there is such a thing as "statin-induced cardiomyopathy", thus my suggestions at chfpatients.com/stew/coq10.htm. My own main problem with statins is that I never see a bad effect attributed to them. They are claimed to do almost everything, such as reduce inflammation, heart size, blood vessel dysfunction, fibrosis, cholesterol problems, and on and on and on, but where's the downside? Does any CHFer (who have more drug experience than most people) really believe a class of drugs with this many supposed benefits has no downside at all? That's an unfounded suspicion on my part but I really do wonder at this one-sided data wave. Jon.


Kitt M, July 28, 2006 - Hello to all on the board, Can any of you help me? My sister, who lives in South Bend, Indiana, has recently been diagnosed with serious heart problems. She is looking for a new doctor, a cardiologist in her region, and she doesn't know where to find a good one in that area. Do any of you have a doctor there that you like? Any information would be greatly appreciated by the family. Thanks. FltAttendt@aol.com


Kathy H, July 28, 2006 - Hi, Thank you so much, everyone who responded. I feel much more certain of myself now. I have called my PCP for an appointment just to talk. She is the clearinghouse for all meds, etc. I am writing my cardio doc a letter explaining my concerns and my decision to not take the cholesterol lowering meds.
     Today and yesterday were wonderful days RA-wise. I am walking, going up and down stairs, functioning near normally. You have to realize on my worst days I can not even do basic hygiene functions, I need help after going to the bathroom. Without taking MTX all this is not possible. I feel good about my decision. kathy_in_wlsv@verizon.net


Kelly W, July 28, 2006 - Hello, Is there such a term as in stage CHF or is my mom's doctor saying end stage? kwkitkat8@aol.com


Norman L, July 28, 2006 - Hi All, I live in Johannesburg, South Africa and am very happy to have found this site - thanks Jon! I had atrial flutter and ventricular bradycardia for many years. In November of 2005 I had a dual chamber pacemaker implanted which subsequently induced CHF with LBBB and ventricular dysynchronicity, and an EF of 30%. Now I am scheduled to go in for a CRT with a Medtronic Insync 111 device. Has anyone been through this and what has your experience been? Kind regards, Norman. liebenbergn@eagleottawa.com


Martha W, July 28, 2006 - Hi all, I went to my cardiologist yesterday. After testing my pacemaker, they tweaked the output to .1% higher, nothing that would noticeably affect my diaphragm but he said it would capture more missed heart beats. I have 137 months left on this battery or close to 11-1/2 years. Then, the cardiologist came in and said he wanted me to talk to the specialist about getting an ICD/pacemaker and that anyone with 30% or less EF for 3 months after taking all the required meds is eligible for an upgrade. Last echo, I was at 20%. We did another echo yesterday and while I don't know the results yet, I do feel it'll be 20% or lower, not much higher if any at all.
     I go for bloodwork today, then meet with both doctors Tuesday. I'm inclined to veto the upgrade. While I still feel like I'm "wading in cement," they agree that the medicines quite frequently cause that effect and the new implant isn't going to change anything. When I had the pacemaker put in, the doctor manually tried to stop my heart beat and couldn't do it. Though sluggish and out of synch, it still chugged on. I was supposed to have an ICD/pacemaker at that time and he rejected it in favor of pacemaker only. So, I don't really feel I have a lot of danger of a heart attack or at least, nothing an ICD could arrest.
     Unless they can present strong evidence that I need this new upgrade, with so many months left before this one needs replacing, I am inclined to work on my diet, sodium intake, exercise level, and if in a given period of time I haven't markedly improved, I may go in at that time to upgrade. I'll know more after the bloodwork, echo results, and Tuesday's meeting.
     Jon, I hope you're getting better as we speak! We all need you, take care of yourself! Martha. mwells@ppfs4.tamu.edu


Jack D's July 28 reply to Jon's July 28, 2006 - Hi Jon, The "one" bad thing tossed out as a slight problem with statins is muscle weakness. The drug companies know that this slight problem is your muscles deteriorating because the statin is reducing your CoQ10 levels. Lipitor, the grandaddy of all statins, was at one time available with CoQ10 included to offset the drastic problem that statins cause - but not anymore and neither your doctor nor the drug companies, nor your pharmacist ever explain the fact that the wonderful world of statins is always going to have this effect. Why? Are they stupid or do they just not give a rip? maddjak@hotmail.com


Martha W's July 28 reply to Lowell P's July 27, 2006 - Hi Lowell, I have a hard time finding the right time to take furosemide (Lasix) too. If I take it with my other meds in the morning before I get to work, I gotta stop somewhere due to a one hour drive. If I take it too late after work, I'm up frequently during the night.
     I've resorted to taking 1/2 midmorning and 1/2 when I get home (when I remember it). I confessed to my doctor that this was a problem for me and he didn't seem overly concerned. I have little to no water retention (no edema) that shows, anyhow. I'm taking spironolactone also and the combination of the 2 may just be too much for me. I'm thinking about going to just 1/2 a pill (20 mg) Lasix in the evening only for awhile and seeing how I react to that. Martha. mwells@ppfs4.tamu.edu


Gene M, July 30, 2006 - Hi Everyone, I thought I would pass this along to anyone who might be interested. Right after I was diagnosed and had to make major dietary changes, my daughter found the web site of a company the specializes in producing sauces that contain no sodium and no fat. The company is Mr. Spice and the web page is at www.mrspice.com. Their web site gives the ingredient breakdown on each sauce. I've tried several of the sauces and they are good (at least to me they are). The prices are reasonable and shipping cost is low. gnkm@adelphia.net


Debra S, July 30, 2006 - Hi everyone, A reminder that statins can also cause liver damage. That is why there should be regular blood work. r_steinberg@sbcglobal.net


Sandy N's July 30 reply to Martha W's July 28, 2006 - Hi Martha and Lowell, It's amazing how each doctor has his own way of doing things. My doctor said when I first started taking Lasix two years ago that 40mg is not enough so he told me to take 80mg. I asked if he meant twice a day and he said no, to take it all at once. He said, "It works better that way, you will never get anything done if you take 40mg twice a day." I found it does work better. If I have a day of more fluid than usual I take it twice a day. My doctor is a CHF specialist. Yes, I have many pottie stops. He also said, "Do not take Lasix within two hours of eating wheat." Good luck to you. So as you can see; each is different. bleuskiiisgrl@yahoo.com


Jon's July 30 reply to Sandy N's July 30, 2006 - Hiya Sandy, Everyone is definitely different and should use what works for them. With that said, best practice is now considered to be twice-a-day Lasix if Lasix is used. However, Lasix should not be taken within 2 hours of eating anything at all because food seriously reduces its absorption. That's why torsemide (Demadex) is gaining in popularity with CHF docs - it is not affected by food at all and only needs to be taken once a day since it lasts 8 to 10 hours.
     Every patient is different but doctors shouldn't state as fact things that are no longer considered facts. I'll quote the from the "Executive Summary" of the official treatment guidelines from the American Heart Assocation and American College of Cardiology as published in The Journal of Cardiac Failure, Volume 12, Issue 1, Pages 10-38, February 2006:
     "7.24 The initial dose of diuretic may be increased as necessary to relieve congestion. Restoration of normal volume status may require multiple adjustments over many days and occasionally weeks in patients with severe fluid overload evidenced by massive edema or ascites. After a diuretic effect is achieved with short-acting loop diuretics, increasing administration frequency to twice or even 3 times per day will provide more diuresis with less physiologic perturbation than larger single doses. ... Oral torsemide may be considered in patients in whom poor absorption of oral medication or erratic diuretic effect may be present, particularly those with right-sided HF and refractory fluid retention despite high doses of other loop diuretics."
     Still, and I mean this for real, if some other method works for an individual CHFer, do what works. It's just that doctors should be careful to say when something is their opinion and disagrees with guidelines. Jon.


Roger H's July 30 reply to Lowell P's July 27, 2006 - Hi Lowell, Since my last bypass and the CHF, I've been averaging 90/60 for blood pressure and the cardiologist and PCP are fine with it that way. I also have CAD. Also, I only have to take a Lasix pill about every couple months with my very low sodium intake. When I do have to take a Lasix it is hard to fit the right time in as I work a third shift job, and depending on where I work that night is a big factor as to how far I am from the restroom. It has been very hot at work, around 90 degrees plus the last few nights, with a lot of humidity. kharmony@highstream.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006 Jon C.

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