The paperwork never ends The Archives
May 16-31, 2002 Archive Index CHFpatients.com

George S 5-15     seek info on clearing re-blocked arteries
 
Jon's 5-15 reply to George S' 5-15     look for "revascularization"
 
Jamie 5-15     just too weird
 
Anne H 5-15     getting biventricular pacemaker
 
Jeremy 5-15     seek info on swimming and cardiac rehab
 
Derald G's 5-15 reply to Jacky's 5-13     so much for bragging about my sleeping
 
Tina Mount 5-15     good news update, Ohio CHF doc
 
Tom S 5-16     seek weight gain while on Coumadin experiences
 
Shiela 5-16     questions about left versus right-sided heart failure
 
Jon's 5-16 reply to Shiela's 5-16     a start
 
Donald Hudson 5-16     web site, webtv
 
Jon's 5-16 reply to Donald Hudson's 5-16     this web site and webtv or msntv
 
Jon 5-17     lots of miscellaneous stuff
 
Paul 5-17     PVC questions
 
Sheryl's 5-17 reply to Jamie's 5- 15     eating, exercise and heart attacks
 
Norma 5-17     good news update, alternative meds & more
 
Derald G 5-17     should I raise my Coreg dose?
 
Jon's 5-17 reply to Derald G's 5-17     possibilities
 
Kylie 5-17     seeking teen communication
 
Jacky 5-17     too many night time bathroom trips - help!
 
Joe W 5-17     got my SSD this time & thanks
 
Rosemary 5-18     losing my hair fast - anyone else?
 
Margery G 5-18     seek others with low blood pressure problems
 
Karen F's 5-18 reply to Rosemary's 5-18     hair loss experience
 
Jon 5-18     page updates
 
Derald G's 5-18 reply to Rosemary's 5-18     hair loss possibilities
 
Norma's 5-18 reply to Margery G's 5-18     low blood pressure with heart failure
 
Amelia's 5-18 reply to Rosemary's 5-18     hair loss experience
 
Nora 5-18     foot, leg and toe problems - any ideas?
 
Dorothy Powell's reply to Nora's 5-18     possibilities
 
Jon 5-20     mailing list, glucophage and heart failure
 
Marvin N 5-20     seek tips on getting sleep despite symptoms
 
Jacky 5-20     back in a month
 
Joanne Kayser 5-20     seek pulmonary hypertension experiences
 
Jon's 5-20 reply to Joanne Kayser's 5-20     what would I do?
 
Art D 5-20     saving money on prescription drugs
 
Lori 5-20     questions about feeling of fullness
 
Jon's 5-20 reply to Lori's 5-20     feeling of fullness possibilities
 
Paul P 5-21     beta-blockers and PVCs - anyone else?
 
Pam's 5-21 reply to Lori's 5-20     feeling of fullness in abdomen
 
Lou's 5-21 reply to Marvin's 5-20     getting to sleep
 
Maria's 5-21 reply to Rosemary's 5-18     hair loss during illness
 
Shelby's 5-21 reply to Margery G's 5-21     sodium intake and low blood pressure
 
Pat M's 5-21 reply to Joanne's 5-20     also seek cath experiences
 
Scott Brown's 5-21 reply to Lori's 5-20     knowing when you are retaining fluid by weight
 
Scott Brown's 5-21 reply to Nora's 5-18     foot problems
 
Joe S' 5-20 reply to Marvin N's 5-20     sleeping possibilities & more
 
Tracey C 5-21     ocular migraine and heart rate disturbance
 
David A 5-21     seek ICD experiences
 
Ben B's 5-21 reply to Paul's 5-17     drugs affect people differently
 
Derald G's 5-21 reply to Paul P's 5-21     maybe no one has had that experience
 
Lori K 5-21     seek weight loss info & more
 
Jon's 5-21 reply to Lori K's 5-21     weight loss & BNP measurement
 
Stacey's 5-21 reply to Pat M's 5-21     heart cath experience
 
Jon 5-22     posts
 
Pam 5-22     is the Atkins diet okay?
 
Jon's 5-22 reply to Pam's 5-22     diets that work
 
Michael S' 5-22 reply to Pat M's 5-21     ICDs, insomnia, heart class, music questions
 
George S 5-22     why is pressure different in my left & right arms?
 
Sheryl's 5-22 reply to Marvin N's 5-20     insomnia and coping with it
 
Sandra 5-22     does anyone have an implanted VRT pacemaker (InSync)?
 
Derald G's 5-22 reply to Jon's 5-16     following the standards
 
Jon's 5-22 reply to Derald G's 5-22     following the standards
 
Derald G 5-24     following the standards
 
Derald G's 5-24 reply to George S' May 22     different arms, different blood pressures
 
Jon 5-24     back in a quick
 
Paul's 5-24 reply to Ben B's 5-21     PVC treatment possibilities & more
 
Paul's 5-24 reply to Derald G's 5-21     PVC treatment possibilities & more
 
Lynn D 5-24     had a VRT biventricular pacemaker implanted
 
Jon's 5-24 reply to George S' 5-22     blood pressure readings
 
Joe S 5-24     confused about coronary artery disease - questions
 
Tina Mount 5-24     question about electrophysiologists & more
 
Katherine H's 5-24 reply to Sandra's 5-22     seek experience of pacemaker wearers
 
Jon's 5-24 reply Katherine H's 5-24     seek experience of pacemaker wearers
 
Janet T B 5-24     confused about time references for EF gains
 
Jon's 5-24 reply to Janet T B's 5-24     time references for EF gains
 
Mel G's 5-24 reply to Pat's 5-21     cath experience
 
Mel G's 5-24 reply to Michael S' 5-22     insomnia, tunes in the noggin & more
 
Elaine M 5-24     need some help - am very confused
 
Janet T B 5-24     seek advice about traveling
 
Lori K 5-24     low sodium cheeses info
 
Frank Smith's 5-25 reply to Joe S' 5-24     doctors and drugs
 
Barbara H 5-25     update, terrible cholesterol & more
 
Carol O 5-25     worse symptoms without weight gain
 
Margery's 5-25 reply to Lori K's 5-24     low sodium cheeses
 
Margery's 5-25 reply to Lynn D's 5-24     biventricular (VRT) pacemakers
 
Herbert L's 5-25 reply to Joe S' 5-24     lowering cholesterol
 
Sheryl's 5-25 reply to Mel G's 5-24     and to Joe S
 
Paul P's 5-25 reply to Janet T B's 5-24     CHFers and traveling
 
Paul P's 5-25 reply to Mel G's 5-24     sleeping, tunes & more
 
Jon's 5-25 reply to Paul P's 5-25     Toprol-XL is different than metoprolol
 
Bob N 5-27     insomnia tips
 
Tracey 5-27     no salt added cheese tip
 
Jon 5-27     to the Healthy Heart Market
 
Patrick's 5-28 reply to Art D's 5-20     using a pill cutter to save money
 
Joseph P's 5-28 reply to Dan Hunt's 5-25     ICD experience
 
Nancy S 5-28     update, low blood pressure helped
 
Katherine H's 5-28 reply to Jon's 5-24     new device process
 
Jon 5-29     page additions & updates
 
David A's 5-29 reply to Dan Hunt's 5-25     ICD experience
 
Vicki 5-29     high EF, meds driving me nuts - questions
 
Jon's 5-29 reply to Vicki's 5-29     I hope others also reply
 
Steve Martin's 5-29 reply to Katherine H's 5-24     ICD/pacemaker experience
 
Ruthie A's 5-29 reply to Patrick's 5-28     cutting pills thought
 
Joe S 5-29     update
 
Vicki's 5-30 reply to Jon's 5-29     Lanoxin, getting second opinion
 
Shannon's 5-30 reply to Joe S' 5-29     coronary artery disease
 
Tom S 5-30     cutting pills to lower costs
 
Carol O's 5-30 reply to Jon's 5-25     how is a CHFer tested for dehydration?
 
Jon's 5-30 reply to Carol O's 5-30     testing for dehydration
 
Tim S 5-30     weight gain on meds - anyone else?
 
Paul 5-30     tough choice on disability options - anyone else?
 
Dan Hunt's 5-30 reply to Vicki's 5-29     stopping CHF meds when heart improves
 
Jon's 5-30 reply to Dan Hunt's 5-30     stopping CHF meds when heart improves
 
Karen K's 5-30 reply to Dan Hunt's 5-30     licorice may be a bad idea
 
Jon 5-31     page updates
 
George M 5-31     how much heart muscle can die & I still live?
 
Jon's 5-31 reply to George M's 5-31     heart damage & quality of life
 
George S 5-31     a CHF specialist can make all the difference
 


George, May 15, 2002 - Hi, I was recently diagnosed with CHF. I had a heart attack and angioplasty (no stents) in 1994 with no further complications until now. I fired the diagnosing cardiologist already and am going with a CHF specialist in the Nashville area. Undoubtedly, my angioplasty has not held through the past 8 years, yet no one seems to be commenting, anywhere I can find, on getting my (likely) reclogged arteries cleaned out as a means of relieving some of the continual pressure on my weakened heart. Any comments or references would be greatly appreciated. Jon, your site has been invaluable, as was Dr Silver's book. george.selin@myppi.biz


Jon's May 15 reply to George's May 15, 2002 - Hi George, It may be a matter of terminology - medspeak. Try looking for info or talking to your doctor about "revascularization." That's the re-clearing of restenosed arteries. It is done a lot either by angioplasty or CABG. Jon.


Jamie, May 15, 2002 - Hi everyone, This is just too weird. Last year I almost died of CHF. The teacher that moved to the classroom I had at the time died last night at an aerobics class of CHF. Surely there wouldn't be anything in the environment of that classroom or the drinking fountain that would cause CHF, or would there? Just too weird. jamlevan@sprintmail.com
 
Jon's note: An uninformed guess would be that dying at an aerobics class indicates heart attack/sudden cardiac death, which indicates ischemia. That would not likely be environmentally caused


Anne H, May 15, 2002 - Hi, This is my first visit to this web site. I am a 58 year old female with severe idiopathic dilated cardiomyopathy. I was diagnosed with CHF in October of 2001 at an ER; I thought I was getting asthma. My EF in October was 14% and after taking a lot of medications, it has now increased to 24%.
     Unfortunately, my cardiologist has labeled my condition as drug-resistant, but he has offered another intervention. This Monday (5/20) I will be getting a bi-ventricular pacemaker, and I am very hopeful that my quality of life will improve a great deal. In the meantime, reading the messages from other CHFers lets me know I'm not alone. Thank you. ahayes@kc.rr.com


Jeremy, May 15, 2002 - Hi, I am a Trustee for a charity that runs cardiac rehab programs. I have recently been told that our classes will have to stop the swimming section, because new research shows that we use more METs in the water without knowing and are therefore overdoing it. The tests are showing a higher possibility of cardiac failure in the water. Do you or anybody know about this? Does anybody have any research to show that swimming is okay? I need a good case to fight closure of the swimming classes.This research is in the UK. jeremymead@btconnect.com


Derald G's May 15 reply to Jacky's May 13, 2002 - Ha, Right after my bragging about falling asleep in 15 minutes I was up at 3:00 AM for almost 2 hours last night. Serves me right. I hope you are sleeping well, though. deraldg@earthlink.net


Tina Mount, May 15, 2002 - Hi everyone, I went to get my second opinion in Columbus, Ohio on Monday the 13th. The good news is that my EF has gone from 10% to 30% within a month's time. This new doctor was very upset that my former doctor had not even performed all the tests for DCM and CHF. He put me on 3.125mg Coreg twice a day, and left me on 5mg Zestril and one aspirin a day.
     I go back this Friday for a stress test. Monday I go back for a TEE. I also have an appointment that afternoon with a CHF specialist. By the way, for anyone interested, this CHF specialist has transferred from the Cleveland Clinc to Riverside Hospital in Columbus and is opening a CHF clinic there. He is currently with Mid-Ohio Cardiology and his name is Dr. Haas. I was very excited to hear that he was there, because I am several hours away from Cleveland, which was going to be my next stop if this second opinion wasn't sufficient. Thanks for listening, Tina. mickjordmoll@hotmail.com


Tom S, May 16, 2002 - Hi, For a little over 4 years I took between 7.5 and 10mg of Coumadin daily and had a lot of trouble maintaining the right level so that my doctor felt safe in taking me off it and going strictly with aspirin. During that 4 years my weight spiraled up by an average of 3 pounds per month and nothing I did would stop it. That lasted for about 9 months until an echocardiogram showed a possible clot in a prolapsed portion of my very enlarged heart and I started a 5 mg and 7.5 mg Coumadin daily regimen again. During that 9 month period I noticed a distinct downward spiral of my weight and lost over 40 pounds during that period.
     While the frequent blood letting for the protime tests is irritating and inconvenient, I have noticed a significant upward weight spiral after starting Coumadin again. I have been back on Coumadin for several months and have not changed diet or anything else and yet here I go again on an upward weight gaining ride.
     I explained this to the doctor and had another echocardiogram hoping I could get off the Coumadin despite his feelings that there is no way a weight gain could be related to Coumadin therapy. Well, the results of the echo are in and not only won't they take me off the Coumadin but it was discovered that my EF had plunged from 25 to something between 10 and 15%.
     Has anyone else experienced a similar weight gain while taking Coumadin? Also, I noticed that my type II diabetes had abated during that same lull in Coumadin intake. bhigheart@hotmail.com


Shiela, May 16, 2002 - Hi there, This is some terrific web site. Is there a left-sided and a right-sided heart problem connected with CHF? What does this mean and how does one know which side is affected. Are there specific tests? My mother recently died of heart failure and her doctor never told me that she was dying. A nurse in the hospital told me. Imagine the horror I felt! No one will answer my questions so I found this site and I am hoping someone can tell me what this means. Thanks for any help, Shiela. vze2h7qb@verizon.net


Jon's May 16 reply to Shiela's May 16, 2002 - Hi Shiela, I think some of the readers here who have right-sided failure actually know more about it than I do but here are some resources that may get you started; and terminology may be a factor. Try looking for info on "diastolic" heart failure. Anyhow, try (let them load and they'll go to the right article) these for starters: Heartbytes, Heartbytes, Page 2, Jon.


Donald Hudson, May 16, 2002 - Hi, My problem with unreadable cascading style sheets using webtv was not solved. My 3 grandsons with college degrees in computer science could not find answers. They read the site, saw how important it is to us all and agreed we had outgrown webtv. Now we have a new computer installed and serviced by them. I think your site should be considered a medical necessity, don't you? jdhudson@webtv.net


Jon's May 16 reply to Donald Hudson's May 16, 2002 - Hiya Donald, If it were, I could sure make a living on it for a change. <lol> Anyone being treated at big CHF clinic should make that suggestion to their doctors and ask them to help fund this monster. ;-)
      I am including here a sort of summary of the problems web tv - now MSN-TV - has with my site and precisely why. The CSS problem is very clear - I follow the standards and MSN does not. Their product is, in effect, broken. I include the appropriate urls so that everything I say can be verified by any interested party.
     I suggest that anyone using their product raise a very large noise to them about how they require developers to use IE 6 to use MSN TV's own site but they expect customers to be happy with an obsolete IE 4-technology browsing experience. Talk about hypocrisy! Here ya go: This is a a sort of summary of e-mails sent to webtv users:

MSN tech support skates around the issue at hand completely. I do not design my site for MSN-TV and it would be unwise to do so since it would rob my other 99.3% of readers of a much fuller browsing experience. However, I do comply 100% with the current international standards for web site design per the official technical specifications for HTML and CSS at W3C. Just so I don't seem to be trying to keep up with the Joneses, the current standards are not new at all. They are about 2 years old already, if memory serves me.
     MSN-TV says their product is equivalent to IE4. That's sleight of hand and they know it. IE 4 is now considered obsolete and primitive in its standards implementation. IE 5.5 is the current standard. You will have to push them about their refusal to meet current internationally accepted standards as written at W3C, because they have not addressed a single pertinent issue here. The following e-mail is included to point out specifics.
(Part 2, sort of) I can remove my logo but that screws me in the long-term and seriously reduces any chance I have of making this site stay the course. Branding is necessary to survive on the web. I tried other methods during the site redesign and none allow standardization that I can change with one line of text. Indeed, some pages did not work with any other method except tables; those tables would have to be customized for each of roughly 500 pages.
     Please note that MSN has made it impossible for me to use their webtv emulator by requiring Windows 98 or higher plus IE 6. Note that they require me as a developer to use IE6 to use their own site but they expect you to accept IE4 as good enough! Since I cannot get the emulator (I use Windows 95 and IE 5.5), I could not have predicted the problem for webtv users when redesigning my site nor can I fix it now. That is out of my hands due to their frankly ridiculous requirements. I have no way to even identify the problem due to this. Nothing convinces MS or MSN to be standards-compliant. It's Microsoft arrogance at work. I used to have MSN as provider and this was the precise reason I dropped them.
     I am assuming the site logo is the red heart in question - I have no way to be sure. The site logo is placed with CSS. I assume that the line involved is seen here. This checks clean at WDG. See http://www.htmlhelp.com/tools/csscheck/.
     Please refer to http://developer.msntv.com/develop/elements.asp - the 3rd, 4th, and 5th items in the table there are the problem. Using the HTML body tag to implement a background image is deprecated in the HTML standard for version 4, which is the current international standard version. See http://www.w3.org/TR/WD-html40-970708/struct/global.html#h-7.1.4 for verification that the webtv background image requirement is deprecated in HTML 4.
     In other words, for webtv to read it I would have to break the standard and do it wrong, meaning that everyone else might have problems seeing my pages!
     CSS is meant to be used for these properties now. You saw on webtv's own page that they do not support the standard method of placing an image on the canvas. They also do not support the percentage method of placement - an international standard as well. See http://www.w3.org/TR/REC-CSS1#background for verification of the percentage placement method as standard.
     I have always tried to make my pages as user friendly as possible. That's why I only use JavaScript for rollovers and why I do not use frames, Flash, Java, ActiveX controls, SSI, or any other methods that require extra downloads or plug-ins. I write my pages manually - including all HTML, CSS, and JS - at the same time I write my content so I really do understand it.
     I am sorry webtv users are having this problem - I really am - but MSN-TV users either need to complain to the people who sold them a non-standards-compliant piece of equipment or need to have someone show me where my own CSS or HTML is incorrect so I can change it - I will if it's wrong! ;-) A site logo on each page is required at this point.

This is intended as explanation only. Having prided myself on making my pages accessible to everyone for years, this issue has really pained me. However, I now have web authoring and financial realities to consider that make a site logo (branding) necessary. If anyone wants to send this message to their MSN-TV tech support or whomever, just send them this url - until it rolls over into the archives anyway - http://www.chfpatients.com/heartforum.htm#Jon5-16replyDonaldHudson5-16. Jon.


Jon, May 17, 2002 - Hi everyone, My schedule is erratic for the next week, so please be patient. I have places I have to take my daughter, an accountant to meet with and set up services, a new bank account to set up, a lawyer to confer with several times, a Holter monitor to get, blood work to be done, and a few other goodies. I am getting a bit tired just thinking about it. <g> I have a ton of new info that I am working on, both for these pages and for the mailing list, but am not quite done with the site rewrite. It'll get it all done though - I have the tenacity of a pit bull (and I am about as tactful <g>).
     The site has slowed to a crawl, I know. My web host is switching to new connections to the Internet and it may be as long as a week more before everything is back to normal. I am drastically reducing the number of posts displayed here until this is resolved. That just means the posts are rolling over into The Archives faster, is all.
     PVCs have become such a topic that I am now actively looking for an electrophysiologist to collaborate with for a new FAQ page about them. Now, I want to thank a whole bunch of readers for several things:

Jon.


Paul, May 17, 2002 - Hi, I'm a first-timer and am at my wit's end with irregular heartbeats. I'm 45 and have been relatively healthy and active but have the genes for high cholesterol, low HDL, high triglycerides, and heart disease. A little over a year ago I had an angioplasty and stent done on 2 branches of my right coronary artery. I do have partial plaque buildup in other arteries but the doctors have been very positive about my condition since my operation. Everything has been going well except that I developed chronic irregular heartbeats over the last 7 months. My cardiologist says they're basically "harmless" PVCs. These have become very bothersome.
     I'm currently taking 25mg metroprolol twice per day, 75mg Plavix, 4mg Mavik, Prilosec, 20mg Lipitor, and one aspirin per day. Some of my worst episodes of PVCs occur within 4 to 8 hours of taking metroprolol during the day and many times during the middle of the night, causing me to lose a lot of sleep. My gut feel is that the metroprolol is causing the PVCs instead of controlling them. Is there information to support this contention or am I likely barking up the wrong tree?
     Perhaps one of my other medications is part of the problem. I noticed that CoQ10 seemed to be recommended in other posts. Any ideas, opinions, or information would be very much appreciated. Thanks very much, Paul. skifree@athenet.net


Sheryl's May 17 reply to Jamie's May 15, 2002 - Hi Jamie, One of the most frequent times for MIs is in the evening, after a meal, with people exercising. Every one of us should wait 30 minutes to an hour before doing anything strenuous. I myself use this as an excuse not to do dishes. It takes a lot of heart work to digest a meal so just relax and take it easy for a while, Sheryl. cvprehab@hotmail.com


Norma, May 17, 2002 - Hello all, Having felt really well for the last three weeks, I can only give a lot of credit to L-carnitine, which I started taking around that time. It is very expensive: $44 for 60 capsules, but in combination with CoQ10, it appears to be increasing my stamina. I spent a few days at Clearwater Beach and despite the high temperatures and increased activity, have continued to feel much stronger. I strongly believe in alternative medicine along with a few prescription drugs such as digoxin (Lanoxin) and Cozaar and wish the medical plans would cover these also.
     Between hawthorne berry, CoQ10, flaxseed capsules, vitamins C and E, and a multivitamin, one has to have a pretty good income to keep up with the expense. However, the results are worth the money, as my heart muscle has stayed flexible despite being class 4 at diagnosis. I have been leading an inactive life, but have now started walking every evening and will gradually increase my distance.
     I think I am proof that no matter how bad it gets, there is light at the end of the tunnel. For 2 years I was nearly a basket case. It's been 5 years since my diagnosis and there has been a bonus: I lost 20 pounds over that time! I keep you all in my prayers, Norma. Norgreenbriar@aol.com


Derald G, May 17, 2002 - Hi, I'm in a hot spot and could use some advice. I have a regular cardiologist in my home town and he seems pretty good and has a good reputation as a surgeon. I went for a second opinion in a town a few hours from here with a CHF specialist and was very impressed.
     Here's the rub. Both want me to go on Coreg. It made me feel great. Now I'm ready to go to 12.5mg from 6.25mg BID and my morning pulse is between 50 and 55 (too low), in the afternoons it is in the 60s, and in the evenings it is in the 70s and 80s. My local cardiologist says stay at 6.25mg my CHF says go for 12.5mg unless I hit the 40s. Which way should I go and how do I explain it to each doctor without losing either one?
     My CHF specialist only has open practice 1/2 day per month so I need my regular cardiologist for routine things. There are no CHF specialists in my town. Advice would be greatly appreciated. deraldg@earthlink.net


Jon's May 17 reply to Derald G's May 17, 2002 - Hi Derald, How do you feel? How high is your ACE inhibitor dose? My blood pressure was unreadable for several months as a result of one meds change but it really pulled me out of trouble by reducing my heart's work load. If you feel pretty good with your low heart rate now, maybe you should boost the Coreg and see what happens. If your ACE inhibitor dose is good and high, maybe your doc would back it down, raise your Coreg dose, and then slowly re-raise your ACE inhibitor dose. My doc has been known to go that route to get Coreg dose up. I am not a doctor. Jon.


Kylie, May 17, 2002 - Hi, My son Michael is 16 years old. Three years ago he contracted endocarditis and and had to have a mitral valve replacement. He's now ready to either e-mail another teen or even better, meet them in a chat room to talk about about what it's like. Can anyone help us? Thanks, Kylie. kylie_needham@hotmail.com


Jacky, May 17, 2002 - Hi, More advice needed! I have realised one of the reasons I am awake so much at night is having to go to the bathroom so often. Once an hour, it seems to me. Any suggestions? I try not to drink anything in the evening, just a little water with my meds. Thanks. Jackymwb@aol.com


Joe W, May 17, 2002 - Well, after being turned down initially by for SSD, I finally got approved today. They told me my sending them copies of test they did not have on their file of me, as well as letters from 2 doctors stating that I cannot work - period - is what changed their mind. Well, whatever did it I am so happy. What a relief and elimination of stress I did not need. Thanks to all who replied to my earlier post about SSD info. I made it! Good luck to all who are fighting this "unfair" system. Don't give up. josephwarr@aol.com


Rosemary, May 18, 2002 - Hi, I am a cardiomyopathy and CHF patient. Although I am doing well, I am losing my hair in handfuls. None of my doctors say it's related to my condition, but it won't be long before I am bald. Has anyone out there experienced the same problem? Please contact me if so. RWood97912@aol.com


Margery G, May 18, 2002 - Dear Friends, I am looking for information and experiences of other CHF patients who had low blood pressure before their CHF diagnosis and now with meds have a very hard time keeping pressure up. Are you on a low sodium diet? We are concerned that the low sodium diet recommended for my husband will drive his pressure down even futher. Also, has anyone been able to get off their diuretic by sticking to a very low sodium regime? margeryden@aol.com


Karen F's May 18 reply to Rosemary's May 18, 2002 - Hi Rosemary, I feel your pain. When I was first hospitalized in 1986 for an aortic valve replcement, pacemaker implant, bacterial endocarditis, and CHF (all rolled into one), my hair started coming out by the handfuls during my hospital stay. Because my hair is naturally so thick, the nurses and doctors didn't believe me and chalked it up to normal daily shedding of hair; but I tell you it was coming out by the handful whenever I showered. It was very traumatic.
     I had been trying to grow my hair out from a short cut to a long one. When my hairdresser saw me after my release, she cried. To a casual observer, there was nothing wrong with my hair, but in reality I had lost about 30% of my hair in volume. Once I was off the strong meds they had me on in the hospital, my lost hair started growing back. For almost a year, you could see a distinct line at the back of my head where all of a sudden my hair would turn from thick to thinner. My hairdresser kept working with it to maintain some sort of reasonable style while allowing my hair to recover.
     I don't know which of the many meds they had me on caused it but it definitely happened to me. My hairdresser mentioned that some blood pressure meds can trigger hair loss, so we assume it was one of those. I couldn't begin to tell you what meds they had me on in the hospital that long ago. You should definitely look further into this and find out the cause. If it is a meds thing, your doctor may be able to switch you over to something that won't have that same side effect. Good luck! ferhoodled@yahoo.com


Jon, May 18, 2002 - Hi everyone, The following pages have been added or updated on my site:

Jon.


Derald G's May 18 reply to Rosemary's May 18, 2002 - Hi Rosemary, Loss of body hair is one sign of hemochromatosis, which can cause cardiomyopathy. I don't know if that includes head hair. Read about it and see if you have any of the symptoms. If so, have your doctor check your ferritin (iron). As a woman, if it's over 200 (especially if it's over a 1000) you may have cause for concern. deraldg@earthlink.net


Norma's May 18 reply to Margery G's May 18, 2002 - Hi Margery, When I was first diagnosed with CHF and cardiomyopathy, my blood pressure was usually in the 90/60 range. Taking Cozaar, digoxin (Lanoxin), and a diuretic made me very weak, but my body gradually adjusted and I am now still in that range, even higher some days. However, I do take a glass of V8 juice every morning, which is very high in sodium. This has never caused me any problems with retaining fluids but does seem to adjust my body somehow to the medications.
     For those with tendency to high blood pressure this would be foolish, but for those of us whose BP is usually low I think we need some salt in our diet. This is my opinion only and at first my doctor disagreed, but now he has seen that it works for me and he just lets me carry on. I personally don't think enough research has been done on those with CHF and cardiomyopathy whose BP has always been unusually low. My Cozaar enclosure reads "for the relief of high blood pressure, " which has never been my problem. I've been out shopping today in 92° F heat and my blood pressure when I got home was 89/59 and I feel okay. Talk to your doctor and see what he can offer. Everybody has a different reaction to medications so you have to see what works for your husband. Good luck, Norma. Norgreenbriar@aol.com


Amelia's May 18 reply to Rosemary's May 18, 2002 - Hi everyone, I sure hope all will have a well weekend. About hair loss, your condition does not cause this but medication will, perhaps the drugs taken for cholesterol, some ACE inhibitors, and some beta-blockers. Amiodarone is notorious for loss of hair. My experience has been with cholesterol meds and amiodarone. After stopping these meds, my hair loss stopped. Good luck and best to all. amelias@erols.com


Nora, May 18, 2002 - Hi, I am looking for information on pain in the feet, specifically blue toes, along with muscle cramping in legs and buttocks. My doctors took me off Coumadin and Pravachol to see if they were causing it but it hasn't eased up. My feet are okay during the day but at night or whenever I lie down they turn purple, get numb, and then I get pins and needles feelings.
     I looked up peripheral artery disease and I have all the symptoms. I'm wondring if any other CHF patient has had these symptoms and what was done for them. Also, does anyone know if there is a problem with taking vitamin E and garlic pills along with CHF drugs like digoxin, Coreg, Vasotec, aspirin, and Lasix? My family is driving me nuts about the blue toes but the docs don't seem to be getting too excited. The biggest problem is that it prevents me from exercising, which I really want and need to do.
     I have had a vascular ultrasound and they did the carotid and legs. They said there was no apparent problem and they got a good look at my purple toes! I'm beginning to get very discouraged. I have an appointment on May 29th with the cariologist but my family thinks I should call Monday and insist that he see me sooner. Any suggestions? Thanks. Nbbru@aol.com


Dorothy Powell's May 20 reply to Nora's May 18, 2002 - Hi Nora, I certainly can't answer your question but I can pass along the experiences of a friend. He had to have 2 heart stents and kept telling his doctors that he did not feel good and had not for months. He finally got in to see an internal medicine doctor who only treats adults. She sent his blood off and had an answer for many of his symptoms - pernicious anemia. His symptoms included very little energy, forgetfulness, and being cold all the time. Perhaps this information will be helpful. Best wishes, Dorothy Powell. DPowell806@aol.com


Jon, May 20, 2002 - Hi everyone, I hope the mailing yesterday helped clear any confusion about glucophage (metformin) and heart failure. To those who are nt on the mailing list, you can get a very shortened version on Heartbytes. You can join the list at www.chfpatients.com/lists.htm.
     The following pages on this site have been updated:

Jon.


Marvin N, May 20, 2002 - Dear Friends, Has anyone found any way to find relief during those terrible nights when you can't breathe easily and can't sleep? I am now on oxygen at night, which sometimes helps and if I feel a bad night coming on I take an extra Lasix early in the evening but sometimes even that doesn't help. I am just up pacing. I am working on a low sodium diet but I (before CHF) have very low blood pressure and have to be careful there. Any suggestions would be appreciated. divinemad@aol.com
 
Jon's note: I'm also interested - I spent the last 2 nights with the same problem


Jacky, May 20, 2002 - Hi, We are driving to Canada tomorrow via California! Take care of yourselves. I'll be back in a month. Jon, take it easy! Jacky. Jackymwb@aol.com


Joanne Kayser, May 20, 2002 - Hello all, I was diagnosed with cardiomyopathy with an EF of 40% about a year and a half ago. Two weeks ago I had a follow up echo which showed my EF back to normal, but showed pulmonary hypertension of 45

Jon's note: average of both systolic and disatolic pulmonary artery pressures is normally 12 to 18mm Hg, figured by the formula: [1 systole measurement (normal 20 to 30) + 2 diastole measurements (normal 8 to 12)] divided by 3.

The cardiologist is now saying I don't have heart problems but pulmonary hypertension is causing all my symptoms. She left me on all my heart meds and scheduled me to come back in 6 months. After looking up pulmonary hypertension, I am very confused and scared. Does anyone have any experience with this? JoKayser@adelphia.net


Jon's May 20 reply to Joanne Kayser's May 20, 2002 - Hi Joanne, I am not a doctor and I am not an expert on PH. However, I strongly suggest that you get a second opinion. Find out specifically if the number you were given is an average or a systolic reading - it makes a very large difference. Also, find out if you have primary or secondary pulmonary hypertension and see if you should begin treatment immediately. That's what I would do, and I would do it this week. Just like heart failure, PH requires immediate treatment - bosentan has just been approved for PH, I believe. Jon.


Art D, May 20, 2002 - Hi Jon, Well, I bet you thought I have croaked but I didn't. I just sat back and read your forum to keep up to date on what's going on with all the new people and all the great help you give, both by your input and your site as well.
     I had not given too much thought to the costs we all encounter with our prescriptions and would have no idea if many others have thought of this or not. Due to the high Canadian exchange rate, there is a lot of money that can be saved there on drugs we need. For example, I just saved $121.42 on my Coreg prescription. It's very easy, legal, and can save any U.S. citizen quite a bit of money. We all need that, don't we? It was just a thought from an old CHFer who still visits you quite a lot.
     Thanks Jon, and here is the link for anyone who would like to compare and try it. Best of all, it's mail order. God bless ya Jon and thank God for your site. These new people are in good hands and good company with you. I sure hope you're doing well. I am - at least I'm still kickin! I think the exchange rate is about 60 cents on a dollar now. Try www.tcds.com/. Art D. bigdog@usol.com
 
Jon's note: Naw, I got your photo of you and your horse, I mean pony, I mean dog. <lol>


Lori, May 20, 2002 - Hi everyone, I was diagnosed with cardiomyopathy last fall. Since then I notice I get swelling and fullness in my belly without any accompanying weight gain. It gets worse if my diet is higher in sodium and after eating. Is this common? My regular cardiologist says without weight gain they do not worry. Has anyone else had experience with this?
     I am currently on 15mg Altace and 2.5mg Zebeta. My belly fullness is uncomfortable but tolerable, however I have never carried weight in my abdomen. I am 43, so maybe my body is just changing? Seems coincidental. Thanks ahead for the help, Lori. thegoof86D@aol.com


Jon's May 20 reply to Lori's May 20, 2002 - Hi Lori, This may be a result of swelling inside your liver, or you may actually be dehydrated, which causes the same feeling. My own past experience also shows that this same feeling (without any weight gain) can result from a drop in cardiac output. Your cardiologist is wrong not to check this out thoroughly, perferably with an echo and blood tests. He is using "old school" thinking. It may be nothing but it may also be something. Jon.


Paul P, May 21, 2002 - Hi Jon, This site is great! Keep up the good work. I didn't receive a response on my post of 5/17 and was wondering if I could try again. I'll be more brief this time. I take 25mg metroprolol twice per day. I have many episodes of irregular heartbeats (PVCs) which last for an hour or more at a time and seem to be related to when I take my metroprolol. My pharmacist told me that metroprolol and Toprol-XL occasionally cause irregular heart beats in patients instead of controlling them. Has anyone out there had this experience or does anyone have any knowledge of such a relationship between metroprolol and irregular heart beats? Any information or feedback on this will be much appreciated. Thanks, Paul. skifree@athenet.net


Pam's May 21 reply to Lori's May 20, 2002 - Hi Lori, I have the same problem. My abdomen feels so swollen that I swear I am pregnant. At night especially, I feel bloated and even tender in some areas. For awhile I was having bad stomach cramps at night only; it drove me crazy. My doctor ran me through tests and even an ultrasound of the area but found nothing wrong, and said it was probably a virus causing the cramps - which finally left. All the organs were funtioning well and looked good. It was probably just edema, although I don't have it anywhere else. The only meds I am on are two diuretics. I guess it is just my CHF, which I blame all my weird feelings on! I hope this helps a little. karuk46@yahoo.com


Lou's May 21 reply to Marvin N's May 20, 2002 - Hi Marvin, I was having a little insomnia last week; I was lucky to get an hour or two's sleep before morning. I talked with my cardiologist during a routine visit on Tuesday of last week and he suggested taking 3mg melatonin about 30 minutes before bed. I've been doing that all week and haven't had a sleepness night yet. I also prop myself up on 3 pillows and keep a body length one by my side to prop my leg on. Melatonin is a natural hormone that regulates the sleep cycle, and you can get it over the counter. I hope this helps. stormhawk@monstermenagerie.com


Maria's May 21 reply to Rosemary's May 18, 2002 - Hi, The June 2002 Harvard Men's Health Watch had this response to an inquiry on hair loss after an illness and hospital stay:

Hair grows in cycles. A major stress such as a physical or psychological trauma can interrupt that cycle. As if to conserve the body's energy to deal with stress, hair stops growing. In technical terms it enters the telogen phase of the cycle. When the stress is over, hair enters the anagen phase and begins growing again. However, as that happens the old telogen hairs fall out. The hair thins out temporarily but as the new hairs grow in, it returns to normal. Dermatologists call the conditon telopgen effuvium.

It goes on to say that it may take 6 months or more to make a complete recovery. My husband spent 3 months in the hospital after a blunt trauma to his chest which caused quite a bit of damage to his heart muscle and was on a ton of medication. He had thick beautiful hair and after everything he went through, his hair was a mess. He lost it in clumps. Once his body adjusted to his heart meds and settled down, his hair actually grew in thicker than before and it grows faster than it used to. Good luck and take care, Maria. kmmcf@vineyard.net


Shelby's May 21 reply to Margery G's May 18, 2002 - Hi, I have low blood pressure also and have had it all my life. My CHF drugs have made it much worse. Your body does adjust to a lower blood pressure but it does take time.
     Regarding diet, I agree with Norma that CHFers with low blood pressure do need some sodium. My doctor recommended that I stick right around the 2000mg (2g) level. That's the highest level usually prescribed for CHFers. Also, it's important to talk to your doctor. He can adjust your medications so that you're getting the maximum dose of the important ones. For example, they can cut back your ACE inhibitor in order to raise your beta-blocker. You have to go a little more slowly with medicine and let your body adjust. Also, I was able to go off of my diuretic by sticking to a 2000mg diet. Shelbyscout@hotmail.com


Pat M's May 21 reply to Joanne's May 20, 2002 - Hi Joanne, I have just been put on oxygen for night time and am also being retested with echo and another pulmonary function test for Pulmonary Hypertension or Cor Pulmonale. I will also be having a sleep study with the CPAP I already had the first part and my O2 stats went to 66. I'll also have a heart cath for a definite diagnosis.
     I know how you feel but I also know we can be helped to continue our lives. Can anyone tell me if a heart cath is an outpatient procedure or not? Does it hurt. God bless you and keep a positive thought. The oxygen helps, Pat M. pmarble@tellico.net


Scott Brown's May 21 reply to Lori's May 20, 2002 - Hi Lori, The biggest problem I have with weight gain is that there are two ways to lose weight: Remove fluid from the body and remove fat from the body. If you normally weigh 150 pounds and you lose 3 pounds in a week from fat reduction, it would be easy to mistake 3 pounds of fluid retention as remaining at 150. In fact, your base weight has changed. You only figure this out one day when you take duiretics and your weight is much lower than expected. In fact, you could be retaining fluid and not see a change in weight, Scott B. kitchenerguy@hotmail.com


Scott Brown's May 21 reply to Nora's May 18, 2002 - Hi Nora, With regard to the purple toes, I assume this is simply from poor circulation. I get pins and needles in all my extremities. The best you can do is keep those feet warm and position your feet in a way that creates the least work for your heart to circulate the blood. Here are some things you could try:

  1. put on several layers of socks to keep feet warm
  2. soak your feet in hot water for a while before bet
  3. when you lay down, put a pillow under your feet to
  4. elevate them. If this is even worse, raise your body and lower your feet
  5. take extra Lasix in case to reduce foot swelling

Family members are trying to be helpful and concerned. I don't think blue toes on their own are very alarming, especially if they are okay during the day, presumably because you are sitting or standing most of the day. The challenge for CHFers is knowing when you should make a trip to Club Med. It seems like there is a certain amount of adversity we just need to put up with; and we have the best idea when it is time to throw in the towel and get checked out. I hope there is some helpful info. Thanks, Scott B. kitchenerguy@hotmail.com


Joe S' May 21 reply to Marvin N's May 20, 2002 - Hi, I may not be the right person to answer about sleeping problems, but when I got that infection in my lungs just 6 weeks after my aortiv valve replacement, sleeping lying down was impossible. Jon knows I have absolutely no patience but I do know how to make a very comfortable nest on the couch; that plus quoting Philippians 4:6 to 9 over and over was all I could do. ("Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.")
     I usually slept 4 to 6 hours that way. Lying down in bed at noon was no problem. Five years ago when the same thing happened, I found the secret was fluffy pillows and a nest. By the way, this has ruined 2 couches. <g> Hey folks, I have found one major advantage to having valves replaced after 63 years. Weight is coming off me like mad. Even my neck is shrinking. I have finally been vindicated. I have been telling people my gut has nothing to do with overeating and now when it's shrinking with no effort, it's proof. Joe S. jes@gbis.com


Tracey C, May 21, 2002 - Hi everyone, I know the topic of ocular migraines has come up before, but I'm a bit concerned over an incident that happened last night. I got an ocular migraine (no pain, just visual disturbance) with severe colorful, zigzagging lines. I haven't had one since the week before I was actually diagnosed and went into CHF. Following the migraine last night, my pulse became very rapid and has stayed that way since. I also urinated literally every half hour last night, which I never do. I finally fell asleep and was awakened to a hard, rapid beat that lasted about 3 minutes; it literally shook me.
     Needless to say, after 2 years of feeling pretty good, I am afraid of what's happening now. My doctor is getting me in today. I just needed to complain to someone who can relate. I'm sure all is well. I just had an echo in April which showed an EF of 50%. Thanks for listening! God bless, Tracey. 2tcollins@cox.net


David A, May 21, 2002 - Hi, Three years ago I had a Medtronic ICD implanted because an EPS detected the possibility that my heart may go into VT. After 2 1/2 years with no VT episodes or therapies, my past 2 interrogation visits over the past 6 months have detected 2 brief episodes of VT. These were quick episodes, running 6 or 8 beats each, with no therapy delivered.
     My heart history includes CHF, a one-time transplant candidate, and I am a regular reader of Jon's Place at CHFpatients.com. I am asking advice from the Zapper group too, as to whether these two episodes may be freeway signs, in your opinion, that my condition is deteriorating and a full shock may soon result?
     My heart doctor has suggested 2 scenarios. 1) My heart is enlarging and getting weaker or 2) This is one of the reasons the unit was implanted. That is, to detect VT events and give therapy if required.
     I am scheduled to have an echo done at my next appointment to see if there are changes to my heart that may explain these VT events. I would appreciate comments from ICD enhanced individuals who may have experienced a similar situation. Regards and thanks, David A. DEZEN@worldnet.att.net


Ben B's May 21 reply to Paul's May 17, 2002 - Hi, Sometimes people get reactions to medications that are the opposite of the indicated reaction. For example, some people taking Valium may get more nervous. These are the exception rather than the rule, but that doesn't mean it never happens. In my case, the beta-blocker Coreg worked wonders in reducing almost constant PVC activity. Maybe you should talk to your doctor about a trial run without the beta-blocker, although I know beta-blockers are routinely prescribed for at least a limited time after any significant cardiac event such as a heart attack. bdbrinkman@juno.com


Derald G's May 21 reply to Paul P's May 21, 2002 - Hi Paul, I'm sorry no one has responded but people come and go. Like me, I'm guessing no one has had specific experience with your problem, so they are unable to comment. Try a web search on your medications and see what you come up with. Did you try searching this site? Best of luck. deraldg@earthlink.net


Lori K, May 21, 2002 - Hello again, Thanks to those who replied to my belly bloating question. I also have a question regarding weight loss. I lost 8 to 10 pounds prior to my diagnosis of cardiomyopathy last fall. My EF was 40%, from 55 two years before. I was monitored due to mitral murmur/click. I read somewhere that weight loss was primarily a symptom of severe and advanced CHF. Does anyone know much about this? Most seem to have the opposite problem.
     I have stayed pretty steady the last 6 months, but I am down to 114 and I am 5' 4". That was great in college but I am concerned. My PCP has ruled out other problems with thyroid, collagen vascular, cancer, etc. My BNP also was 11, and I am supposedly in functional class one. Any ideas out there? Thanks again, Lori. thegoof86d@aol.com


Jon's May 21 reply to Lori K's May 21, 2002 - Hi Lori, You are referring to cardiac cachexia. That's what it is called when in end-stage chronic heart disease you rapidly lose at least 7.5% of your total body weight. Most people in that situation lose even more than that. If you have stayed steady for 6 months, you definitely don't have to worry about your weight loss being a sign of end-stage disease. :-)
     Just a comment about BNP levels. This is a blood test designed to diagnose heart failure (as a recent mailing detailed). Many doctors are trying to link it to heart failure patient management over time, and that isn't a bad idea. However, it is not working out nearly so well in that regard. This year, my own BNP went down to only 14 at the same time my heart enlarged 15%, my heart rate went up 20 beats per minute and my 6-minute walk test hit an all-time low. So obviously - after diagnosis - the BNP figure has some limitations. I think you'll see this being "discovered" in medical circles in the next 2 years. <g> Jon.


Stacey's May 21 reply to Pat M's May 21, 2002 - Hi Pat, Don't worry too much about your heart cath. I had one 3 weeks ago and it was easy for me. The nurses gave me enough drugs so that I was very happy the whole time and I felt no pain. I was released 2 hours after the cath because they were able to stitch the artery. If they can't stitch the artery, you have to apply pressure to the groin for about 6 hours or that is what I was told. Don't worry, you'll be fine! Good luck to you, Stacy. DSRivara@aol.com


Jon, May 22, 2002 - Hi everyone, Well, I think I've made it past all the delays and have to go to the hospital this afternoon and get my chest shaved and wear that steenking monitor. Posts may be late or slow as a result. ;-) Jon.


Pam, May 22, 2002 - Hello, I read this site every day and I love it. I haven't posted too often. I was diagnosed in May of last year with CHF and DCM. My EF was 27 to 30% and 3 months later was 35%. They said my heart size also went down and that I had an overall improvement.
     Anyway, I want to lose some weight and wondered if anyone has tried the Atkins' diet? I was wondering if it is safe. It is a very low carbohydrate diet, and a lot of protein. Would that kind of diet not be good for us? I will ask my doctor but in the meantime wonder if anyone else has tried it. Thank you for any input. I want to lose about 20 pounds. I have no problem with the 2000mg sodium restriction, so I know I still need to watch that also. Thank you, Pam. mattnpam@juno.com


Jon's May 22 reply to Pam's May 22, 2002 - Hi Pam, I usually shy away from commenting on specific diets but I hear this so often I thought I'd take this chance to plug the only diet plan that I know works, without fail, every time, for anyone. It's called counting calories. Usually for a woman, shifting to a 2000 calorie per day diet will result in a slow, constant weight loss. It isn't hard once you get used to tracking every bite that goes into your mouth. You'd be surprised how much you can eat if you learn to be smart about it calorie-wise. Plus, you can eat whatever kind of food you want, as long as you count the calories.
     Talk to your doctor about how many calories to shoot for at first, and give it a try. My wife is down almost a pound a week since she started it. Jon.


Michael S' May 22 reply to Pat M's May 21, 2002 - Hello Pat, I had a heart cath while I was still in the hospital last July, when I was diagnosed with CHF. The procedure was okay and non-stressful for me. They clamped me with something for about 30 minutes in recovery, then I had to stay flat on my back for about 6 hours but they did not stitch my artery. I hope this helps.
     Now I have a question or two. I just went to see my cardiac surgeon to have my routine ICD 3-month checkup and have not had anything monitored since early August when it was implanted. While I was there I asked him what class I was in and he said between class 2 and class 3. The thing is that I no longer get fatigued with a 17 minute mile on the treadmill and my one hour workout with weights, which I have increased from 5 pounds dead weights to an average of 60 lbs on various machines. I think I am between clas one and class two. What do you think?
     I have now joined the insomnia crowd and also can't remember short-term, mainly not important memories but it just bugs me. The last thing is, has anyone experienced one song running through their mind for days on end? It seems the only way I can stop it is to listen to another song, then that one goes for days. Thanks in advance, Michael S. mikes@cpros.com


George S, May 22, 2002 - Hi, Do you have any idea why the blood pressure in my right arm runs approximately 25 to 20 points higher (on both measurements) than my left side. It doesn't seem to matter whether the systolic number is pegging normal or running high, the same relationship holds true. Thanks. george.selin@myppi.biz


Sheryl's May 22 reply to Marvin N's May 20, 2002 - Hi, If I am not asleep by midnight I take one Benadryl capsule. This is with my doctors' permission. Get your's if you want to try it. This may be totally a placebo effect but it works for me. Perhaps warm milk would work as well if you believe it will.
     I think Coreg is the culprit for insomnia. Of course the doctor says it's not but I never had problems before I went on it. I also used to meditate and use breathing exercises to relax and relieve stress. I find it very hard to clear my mind enough to do this now. The commercial for me would be: This is your mind on drugs (then show Mexican jumping beans). Does anyone else have this problem? cvprehab@hotmail.com


Sandra, May 22, 2002 - Hi, I have had CHF 2 years this past March. I see a cardiologist in Charlotte, North Carolina and I am pleased with him. My EF was 25% when I left the hospital in March. It has dropped to 15%. I had an echo On April 9th. They don't like to tell me numbers because they think I dwell on them. My results showed no better but not a lot worse - that was what they told me. They also give me some information to think about. The device is called Medtronic InSync Cardiac Resynchronization Systemedical procedure. Does anyone know anything about this? I have looked it up, but would like to know if anyone has actually had this procedure. pink_lace982@yahoo.com


Derald G's May 22 reply to Jon's May 16, 2002 - Hi Jon, Please continue to follow the standards. Your pages adjust themselves to the size of my PDA. More and more people will be using Internet devices of various types and you will need to stay flexible. deraldg@earthlink.net


Jon's May 22 reply to Derald G's May 22, 2002 - Hi Derald, I will. What makes MSN-TV so frustrating is that my pages degrade so well that I can still view them with no problem in my antique Netscape Navigator 2 but Webtv breaks. That sort of says it all. I think, though, that I will put off going to XML as long as possible. If manufacturers follow standards for well-established standards this poorly, they will probably butcher a new standard! Jon.


Derald G, May 24, 2002 - Hi all, Several of you have mentioned that lately your SSD was approved "out of the blue." While going through the SSA site I found that the cardiovascular system rules were updated February 19, 2002. Jon may already have this link but here it is in case: www.ssa.gov/disability/professionals/bluebook/AdultListings.htm deraldg@earthlink.net


Derald G's May 24 reply to George S' May 22, 2002 - Hey, I think I know the answer to this one! It's because you're right handed. I'm left handed and my left BP is greater than my right. deraldg@earthlink.net


Jon, May 24, 2002 - Hi everyone, I have to get moving, starting with taking my Holter monitor back to the hospital so I'll have to do posts later this afternoon. There are a lot of them and I will get them up today. Thanks for your patience ;-)Jon.


Paul's May 24 reply to Ben B's May 21, 2002 - Hi Ben, Thanks for the input. I'm meeting with my cardiologist next week. I'll see what he says about a trial run without metroprolol or perhaps a switch to Coreg. Another alternative may not involve meds or any sort of medical procedure. Some things that I've read recently provide pretty solid proof that a daily regimen of meditation and controlled breathing techniques may reduce or even eliminate irregular heartbeats. I have to do something because the PVCs are definitely impacting my daily life. If I find anything that works, I'll make sure to post it. Thanks again! skifree@athenet.net


Paul's May 24 reply to Derald G's May 21, 2002 - Hi Derald, Thanks for the input. I've done some searching on the Net but I should do more. I contacted the manufacturer of metroprolol but their reply just referred me to their detail spec sheet on the med, which I haven't acquired a copy of yet. My cardiologist really, really wants me to stay on metroprolol because of the strong evidence of it's effectiveness in reducing the occurrence of life-threatening cardiac events in heart patients. He also thinks it's unlikely that the metroprolol is actually causing my PVCs. From my non-medical, sort of common-sense standpoint, it makes sense to me that some people's hearts may respond to the heart regulation effects of beta-blockers with irregular heart beats due to some sort of resistance by the heart to being regulated or maybe the beta-blockers throw something else off which affects the regularity of heart beats. Who knows? Anyway, I meet with him next week and we'll kick around some options and we'll see what happens. Thanks again. skifree@athenet.net


Lynn D, May 24, 2002 - Hi all, I am now the proud owner of a biventricular VRT pacemaker. It was implanted May 21, 2002, at Emory University in Atlanta. My shoulder is killing me and looks worse. My oxygen content is much better and some of the wild beats are doing better. I got some new smaller leads that had only been on the market 3 days. That's a good thing since I am female and on the small side. They were having trouble with the other leads being too large for women. Now I'll do the phone hookups for rechecks and follow the plan. The implant procedure is not bad, only the shoulder. Happy tap dancing, Lynn D. lynndaniel@mindspring.com


Jon's May 24 reply to George S' May 22, 2002 - Hi George, Derald has mentioned one of several reasons the pressure in one arm may measure different than pressure in the other arm. However, the difference in your case is greater than usual. One remote possibility is coarctation of the aorta: a pinching of the aorta; or it could be a problem where the aorta branches off to feed your different arms. You should have your PCP check into this - just to be on the safe side. Jon.


Joe S, May 24, 2002 - Hi, Talk about scary news! I just found out that my surgeon was fired for alcoholism but that's not why I write. I need some imput from anyone. Despite my surgeon's faults, my aortic valve and one artery were replaced with no problems and I am doing much better.
     My confusion is regarding my cardiology group, which consists of 16 doctors giving me different imput. The doc I saw yesterday told me I have coronary artery disease and need to take Zocor for the rest of my life. However, 2 years ago after a series of tests, another of their cardiologists told me I had 2 arteries that were 50% blocked. Well, they replaced one during surgery. Does this still mean I have coronary artery disease and do I have to take Zocor for the rest of my life? My bad cholesterol has been a constant 130. Anyone's advice would help, Joe S. jes@gbis.com


Tina Mount, May 24, 2002 - Hi, I have some questions about stress test results. My new doctor had me take a stress test last week, and also a TEE. I went to see a CHF specialist and he said that my tests came out fine. They looked at the hole in my heart and said it was a birth defect, but it was not medically significant and I would have gone through life not even knowing I had it, had the cardiomyopathy not occurred. He also said my stress test came out fine. They came to the conclusion that my cardiomyopathy was caused by my pregnancy and are now referring to it as PPCM.
     He gave me a good prognosis, upped my Zestril to 10mg and my Coreg to 6.25mg BID. He said to come back in a month for a checkup. I was very pleased and figured things were going to be easy from now on. Well, my cardiologist's nurse called me yesterday and said that I needed to make an appointment for a 6-week checkup echo, which is fine; but he also wants me to see an electrophysiologist about my stress test results. I got scared because I had that kind of a doctor perform an EPS on me in April and I am afraid that means they think I need an ICD, which was ruled out in April. The nurse said no, he didn't think that it was anything like that.
     My question is, what other reason would I need to see an electrophysiologist? Do they do anything else besides implants? Maybe I am just misinformed on their speciality. Thanks, Tina. mickjordmoll@hotmail.com


Katherine H's May 24 reply to Sandra's May 22, 2002 - Hi, I would like to have information on the heart resynchronization pacemaker (VRT) too. My cardiologist just told me today that he wants me to seriously think about having one put in. The thought of a device implanted in my chest for the rest of my life (I'm 54) does not sit well with me. I think it's time for a second opinion.
     For those of you who have had one, does it help? Do you feel better and have more energy? I am on 6.25mg Coreg twice a day as well as 50mg amiodarone (Cordarone), and 25mg Cozaar. I am so tired, have terrible brain fog, and don't have much quality of life. My numbers are so low the doctor won't increase any of my meds so he thinks this is pretty much the only solution. Any thoughts would be much appreciated! kholian@metropo.mccneb.edu


Jon's May 24 reply to Katherine H's May 24, 2002 - Hi Katherine, I have zero personal experience with the device but would like to point out that the first step is to make sure you fit the criteria marking people who will probably get real benefit from VRT. See the pacemakers page for those criteria.
     Personally, I think any person considering an invasive procedure or device implant should routinely get a second opinion. This isn't putting a new set of shock absorbers in your car - this is the only body you're gonna have this side of the grave. That isn't meant to scare anyone, just to remind us not to be casual about our medical care. ;-) Jon.


Janet T B, May 24, 2002 - Hi Everyone, I have read or heard a number of different time spans during which one would expect (hope) to see a gain in EF if one is going to happen. I have seen this period described as 6 months post-diagnosis, 6 months after reaching target on meds, and by one year post-diagnosis. All have been described as "drop dead" (no pun intended) time spans. Where is truth here? Or is this me being too technical again? Janet T.B. jtitus@chestnut.org


Jon's May 24 reply to Janet T B's May 24, 2002 - Hi Janet, If your EF is going to return to near-normal, it will "usually" do so within 6 months after diagnosis and treatment start, with a significant subset of CHFers seeing good gains in heart function later, within the one-year reference. However, EF can go up significantly much later - years later - I am living proof. Those of us seeing that later improvement however, do not tend to get as close to "normal" as the people with early improvement. I hope that helps. Jon.


Mel G's May 24 reply to Pat's May 21, 2002 - Hi Pat, You've probably read that most people have no trouble with the cardiac cath at all. I found that it isn't terribly painful either. I didn't find it very easy, though. I think that was more due to my circumstances.
     Last October, thinking I was a very healthy 44 year old mother of 4, I was flown by Australian Royal Flying Doctor Service from the local hospital to the main teaching hospital in the closest city. I was tachycardic, hypertensive, drowning with pulmonary edema, and in acute congestive heart failure. After one day in CCU, they couldn't make sense of what was going on with me and sent me to the cardiac cath lab. I think I had been very understanding and quite calm up to that point, although I was just incredulous as to what I was doing there.
     As I waited for the procedure, I thought "Oh well, I'm in good hands and they'll take care of me." I remember 2 patients who finished up before me being wheeled into the recovery area and saying, "Oh, that wasn't too bad, I didn't feel a thing, no worries, that was easy!" Again, I thought "See, nothing to worry about. They thought it was just fine." The nurses were very helpful and usually they give you something like valium to help you relax.
     I went in for the procedure and as my cardiologist started the cath I just started crying and crying. I was just overwhelmed and couldn't stop. I really didn't know why I was on that stupid table having someone shove something into my heart. I was worried and sad and so frustrated that my life was turned completely around and I had no control. I just didn't want to be there and I felt very angry. The poor doc didn't like it one bit and kept saying, "Give her more" valium or whatever it is that they give by IV to relax you. It was pretty tense, but eventually we all made it through the procedure.
     I felt kind of guilty and embarassed afterward. Obviously the doctor didn't usually have that kind of effect on his patients! <g> However, I know it was understandable. I hadn't had any time at all to adjust to what was happening to me and when faced with the cath it was all undeniable. So in the end I'd agree that it wasn't very painful but it was one of those things I hope they don't have to repeat. What did they find? Well, you could drive a truck through my arteries but my heart was enormous and 2/3 of my heart muscle was dead and necrotic: cardiomyopathy, cause unknown.
     Good luck with your cath. I think you'll find that it is fairly quick and not very painful, and the recovery is just a nice rest without much movement. It's all over in no time. :-) You'll be fine, because you're prepared. I hope they have some good results for you. Thanks for patiently letting me tell that story - it feels really good to get that said. falmouth@bigpond.com


Mel G's May 24 reply to Michael S' May 22, 2002 - Hi Michael, It's funny that you should say that about the tunes in your head. This is the one thing that absolutely is guaranteed to drive me nuts, more than any other symptom I have. I get tunes, like you, that go on for days and days nonstop. They just will not go away unless replaced by another. They continue through the night, when they bother me the worst, and go on into the next day.
     I have moderate insomnia and when I'm having a wakeful night the tunes are bad. When I sleep well I can sometimes get rid of them. I wonder what it is about our condition that makes our nights so restless. As Jon says, "As if we weren't tired enough!" Sheryl thinks it may be the Coreg but I'm not on Coreg. I take Toprol-XL so for me it's not Coreg. Sorry I can't help with a suggestion but sometimes it's just nice to know there are others out there. :-) falmouth@bigpond.com


Elaine M, May 24, 2002 - Okay, I need some help here. I had knee replacement surgery on April 30 and less then 12 hours later I went into CHF. I was moved into ICU and was given Lasix, which helped immediately but I still stayed in ICU for 3 more days and had a couple of small setbacks requiring additional Lasix. This is all very confusing and I hope to get some definite answers at my next doctor's appointment in June.
     I had an MI in 1992 which was diagnosed and treated right away, and it left no damage to my heart, confirmed by a cath and stress tests later. I am now 51 and this snuck up on me and has blown me away.
     Could the surgery have caused this alone? Or is this looking for an easy out on my part? I do have high cholesterol (familial) despite taking 3 different meds and changing my diet. My knees have prevented me from doing any sustained exercise but I still have been very active walking. Has anybody else had this happen? What are some of the key questions I need to ask? Please help because I'm just so confused I don't know which way to turn right now, Elaine. ElaineM43@aol.com


Janet T B, May 24, 2002 - Hi Friends, I will be taking a work-related trip soon, my first since my diagnosis. Given how tired I get, I am a little apprehensive about the looonnnggg days traveling to and from (about 17 hours counting driving, waiting, flying, waiting, shuttling, and waiting). I also could use advice on sticking to my low-sodium diet without starving. I will be in Quebec so I imagine the food situation will be similar to finding acceptable restaurant food in the States. Any advice would be welcome. Thanks, Janet T. B. jtitus@chestnut.org


Lori K, May 24, 2002 - Hi, Thanks Jon for all your help on my questions. I just wanted to give anyone interested a heads up that Tilammok Cheese Company no longer makes low sodium cheddar. My heart has been broken! They said they did not have the demand and were throwing away over 60% of what they made. I called their marketing department after trying to find it for weeks. They said Kraft and Land of Lakes make low sodium cheddar. Just to keep everyone on top of thimgs. thegoof86d@aol.com


Frank Smith's May 25 reply to Joe S' May 24, 2002 - Hi Joe and everyone, Joe, your post hit a nerve in me about statin drugs for so-called high cholesterol, which most people have and make in their bodies. There are some exceptions for people whose lipid levels are out of whack and their levels should be a cause for concern. However, for example, all of my family, extended and otherwise, have cholesterol levels of 250+ and do not take these drugs, yet my mom and dad lived to be 81. I prefer to take the circumspect but cynical approach to the presumed problem, which I believe was manufactured by the dreaded marketing crews that work for the pharmacuetical giants, whose ethical behavior may be questioned. Most doctors in my area push these drugs without any shame whatsoever. Why? Maybe trips to Cancun and Mazatlan, special dinner parties, weekends in Las Vegas and Palm Springs, etc. These clowns are as bad as the U.S. Congress. Here is a laugh for all of us: I have a lady friend who just turned 90 and her doctor recently insisted that she start taking a statin drug. Later, Frank Smith. marquasmith@nethere.com


Barbara H, May 25, 2002 - Hi, I have decided to sign in after a couple years lapse. I wanted to thank all the people who gave me hope and encouragement when I was so ill and having family problems. One great thing happened when we decided to adopt a rescued dog. His name is Malcolm. He is a Lab and Rottie Mix, and weighs in at 125 pounds. The whole family loves him and he is just a gentle giant. Jon, I thought you would definitely appreciate Malcolm's being part Rottie. You were so right about the breed. Malcolm has been so good for me and gets me walking, which I need for the CHF as well as diabetes.
     My latest EF measurement was 2 years ago and it was 85%, which my family doctor said wasn't good. The cardiologist thought it was wonderful. I don't think it's that high lately.
     I have been very worried about my cholesterol test results that I have been getting. My total cholesterol the last time was 152, but it's the good versus the bad that has a terrible ratio. I have very little good cholesterol. My triglycerides were up to almost 700. It worries me that my dilated cardiomyopathy and enlarged heart may be about to suffer blockage with the above readings.
     I haven't talked about this for awhile now and it feels good to let it out. Again, thanks to all of those people who helped me when things were down. My husband was planning to leave me and instead we managed to make it work. So things are a lot better. BJHaley7@aol.com


Carol O, May 25, 2002 - Hi everyone, I have a question about my CHF symptoms. I was diagnosed with DCM 5 years ago and I have not had any problems until a few months ago. Three months ago I started having SOB, even after climbing one flight of stairs. My cardiologist told me that I was probably retaining fluid, even though I weighed myself every day and I had not gained any weight at all. I started taking more Lasix and I immediately felt much better.
     However, just a month ago I started to have the same feelings of SOB, fatigue, and loss of appetite. I still am not gaining weight at all but I think that I am probably retaining fluid again. I am still taking the increased Lasix every day. I don't understand how my symptoms can change so rapidly without any increase in my weight. My ankles or extremities are not swollen but I still get SOB after climbing one flight of stairs. I am scheduled to have an echo, stress test and a MUGA in 2 weeks so my cardiologist will be able to tell me more at that time. However, I want to find out if anyone here has had a sudden change in symptoms without any weight gain and if this problem can be adjusted by a change in meds. I am now taking Lasix, Coumadin, Coreg, aspirin, digoxin, Vasotec, and potassium. Thanks, Carol O, DCM, 15% EF. cao999@ameritech.net
 
Jon's note: Have you been checked for dehydration?


Margery's May 25 reply to Lori K's May 24, 2002 - Hi, Thanks for the information about Tillamook cheese. We had also been trying to find it. We have found another low sodium Monterey Jack cheese by Organic Valley. We located it at Whole Foods. It is actually labeled "low fat" but also has about half the sodium of other cheeses. margeryden@aol.com


Margery's May 25 reply to Lynn D's May 24, 2002 - Hi, My husband has also just had a biventricular pacemaker with a defibrillator implanted 9 days ago. He is not a large man, and the device is quite pronounced! The procedure took 8 hours, so he is still also recovering from the anesthesia. It's too soon for us to tell if he is improving, but we would like to hear from others with biventricular pacemakers. Hopefully the news is good! margeryden@aol.com


Herbert L's May 25 reply to Joe S' May 24, 2002 - Hey Joe, My PCP put me on a very old (but new to me) medication to reduce my LDL and it works great for me. I also take Lipitor. I was on Zocor but it gave me problems; Lipitor does not. The stuff she prescribed is Cholestryamine and it comes in packets that you mix with applesauce or fruit juice. It dropped my LDL like a rock. the-honey-do@charter.net


Sheryl's May 25 reply to Mel G's May 24, 2002 - Hi Mel, since Coreg and Toprol-XL are both beta-blockers, they could have the same effect on our minds.
     Joe S, you still have CAD. They just repaired a symptom of your disease. I think that aggressive treatment with statins is the way to go nowadays. Your bad cholesterol should be kept under 100. cvprehab@hotmail.com


Dan Hunt's May 25 reply to David A's May 24, 2002 - Hi, I just had my GemIII implanted last week, and would be very interested in seeing an answer to your question, as a Holter monitor test revealed a similar run of V-tach in me prior to the implant. I was also briefly considered for a heart transplant and have been in CHF for several years. By the way, how long did it take for you to become used to this thing in your chest? I wake up at night any time I roll onto my left side or move my left arm. danpatricia.hunt@prodigy.net


Paul P's May 25 reply to Janet T B's May 24, 2002 - Hi Janet, I have also had many reservations about traveling after my diagnosis and angioplasty with stent. I didn't want to get very far from my safety zone, 15 minutes away from the local hospital where my general care and cardio doctors are located, and where they have a very good ER.
     When it comes to any big trips, I've conferred with my doctors first. They've always been okay with any of my trips. My most recent trip was a week-long ski trip at high altitude in Colorado. I took it easy but we had a good time. Despite always having my doctors okay, I've always tried to make sure that I know what emergency help is available in the places that I'm going to be in the event of CHF or MI. Also, I always have my nitro and make sure the people that are with me know where it is. In addition to that, my wife or I always have a cell phone with us, which is the best that you can do when traveling in the car.
     It might sound like I'm paranoid but the precautions have helped me not to worry as much and have helped me relax and enjoy any trip that I've been on. I hope this helps. skifree@athenet.net


Paul P's May 25 reply to Mel G's May 24, 2002 - Hi Mel and Michael, I also have trouble sleeping. I fall asleep fine but many times wake up in the middle of the night and have problems getting back to sleep. I'mot sure if it's the 50mg of Metroprolol (basically same as Toprol-XL [Jon's note - see next post]) a day or just an overactive mind or something else, maybe all of the above. Many times episodes of constant PVCs kick in when I wake up and then I'm in for a long night. You can't fall asleep when someone's beating a bass drum inside your chest.
     As far as the constant tunes, I've had that occur to me off and on since I was a kid. It's probably an individual thing that can be due to a whole bunch of causes. One thing that I have found is that I generally sleep much better if I don't eat anything for at least 2 hours before I go to bed. Also, eating a big dinner seems to have a negative effect as well. I don't know if there's any corroborating clinical evidence of this but there sure seems to be a correlation in my case. skifree@athenet.net


Jon's May 25 reply to Paul P's May 25, 2002 - Hi, I am so very tired I hope I don't sound argumentative. That is not my intent. Please see this post for why metoprolol is not the same as Toprol-XL for people with heart failure: www.chfpatients.com/archives/archive7-2001a.htm#Jon7-5replyAmelia7-5. Thanks, Jon.


Bob N, May 27 2002 - Hi, To the people out there having trouble sleeping. Is this insomnia, or from a breathing problem, or just not being able to fall asleep? If it is from not being able to fall asleep, have you checked the possibility that you might be getting too much caffeine? A lot of products have caffeine in them that you don`t know about. What works for me is I like to ride the exercise bike about an hour before bed time. This tires me out pretty good and is also good to get rid of the supper time calories. Good luck to all. bignick42@aol.com


Tracey, May 27 2002 - Hi everyone, Sonnet Farms makes a no salt added Monterey Jack that is really good. Nothing fake, just the cheese without the salt. I found it at Whole Foods Market. Take care. 2tcollins@cox.net


Jon, May 27 2002 - Hi guys, A thank you to the Healthy Heart Market for the birthday gift. It was delicious. :-) Jon.


Patrick's May 28 reply to Art D's May 20, 2002 - Hi Art, You're right on about buying meds in Canada. What you didn't mention is that since the cost of some prescription drugs the same no matter what the dose, it is may be cheaper to buy the largest dose possible and then use a pill cutter to cut them down. For an example, I use 20mg of Zocor daily and it costs the same if I buy 20mg tabs or 80mg tabs so I had the doctor write me a Rx for the 80mg tabs and by cutting them into fourths I reduce the cost from $110 here in the US to $27.50. When I buy them in Canada I pay $50, which after cutting them only comes to $12.50. You can do this with any tablet that is under an inch long. It just takes a little bit of thinking as to which way to cut them. If a tab is round there is no problem but if it is an irregular shape like Coreg then if you cut in in half there is no problem because you just cut it across the width, but if you want to cut it in fourths, then you first cut it in half across the width and then take each half piece and cut it in the other direction. Pill cutters get dull after a few months but they only cost about $3 so it's worth it to buy a new one from time to time to insure that you keep getting nice clean cuts. Be sure to buy a pill cutter that is wide enough to accept your meds, especially if you have long tabs like 25mg Coreg or 80mg Zocor tabs; some pill cutters are narrower than others. The one I use will spring open to allow a tablet one inch long to be cut. One problem most people have when cutting pills is that they push down too slowly. To get the best cut, just bring the top down until the blade is just touching the tablet and then snap it closed as fast as you can! NarleyHarleyGuy@webtv.net


Joseph P's May 28 reply to Dan Hunt's May 25, 2002 - Hi Dan, I have had my ICD since August 28, 2001. The only thing that bothers me is when I get something against it, like when I lift something that rubs it. Lying on my left side is a little uncomfortable but in time you will be able to do that, Joe. joeandol@shawneelink.net


Nancy S, May 28, 2002 - Hi all, I just wanted to say that my BP was really low a couple of weeks ago and I called the doc. They told me to stop my Lasix to see if it would help and that I may be "dry." I guess that must have been the key because now it's running around 105/50's, which for me in the last couple of years is excellent. I'm still doing really well after my ICD implant. I am working every day and enjoying my weekends as I haven't been able to do in several years. :-) ns1@alltel.net


Katherine H's May 28 reply to Jon's May 24, 2002 - Hi, I do meet the criteria with a QRS of 130ms or greater, often have a pulse in the 40s, and have gotten so that the side effects of the meds - particularly 6.25mg Coreg and 50mg amiodarone - leave me so tired and in a brain fog that the cardiologist won't increase the dose. Those are very low doses of each. Right now I'm trying to get my insurance company to call back to make sure these new devices are covered. kholian@metropo.mccneb.edu


Jon, May 29, 2002 - Hi everyone, The following pages on my site have been added or updated:

  1. Diastolic Heart Failure FAQ page
  2. Medspeak
  3. Ejection Fraction FAQ page

Can you believe that I finally got a whole page up about diastolic heart failure? Finally! <g> Jon.


David A's May 29 reply to Dan Hunt's May 25, 2002 - Hi, I became completely used to my ICD after about 6 months post-surgery. I seemed to have a slight problem with my left shoulder too but, thank goodness, this has all subsided and I can now sleep on my left side with, in most cases, no problems. However, I can sometimes feel the pressure of the unit in my upper left area, but very slightly. I have even gone to the golf range and hit (that is tried) golf balls. Regards. DEZEN@worldnet.att.net


Vicki, May 29, 2002 - Hi everyone, It's been awhile since I posted but I would like your opinions on an issue. I was diagnosed with cardiomyopathy in February of 2001. At the time, my EF was 40 to 45%. It was assumed that the cause of the problem was probably viral in nature. Now, a little over a year later, my EF is 60 to 65% and my heart is no longer enlarged. My cardiologist has said that I am to remain on my regimen of medications for life. I take 5mg Zestril, 25mg Coreg twice a day, and 0.25mg digoxin (Lanoxin) per day.
     I don't sleep well, I cannot remember anything, I lack the focus to read and comprehend, and in general I don't have a lot of energy. My blood pressure runs in the high 80s over 40 to 60. I saw my internist today and he said that he disagrees with my cardiologist and that I should taper off the medicine and have another echo in 3 or so months. I would really like to go off the medicine. I know that it may be risky but since I recovered so soon, I'm thinking that it might be worth the try if I'm monitored carefully. On the other hand, I don't want to make a stupid decision and regret it. Any comments would be appreciated. Thank you, Vicki. Snevetsii@aol.com


Jon's May 29 reply to Vicki's May 29, 2002 - Hi Vicki, I am not a doctor. I wonder why you would be kept on digoxin, unless you have a-fib. If it were me, I would get off the digoxin first, then wait 30 days and start slowly reducing my Coreg dose until I was down to 6.25mg BID; then I'd see how I felt after 6 months at that dose. Of course, this would be discussed with my doctor first, remembering that his opinion is very important but that it is my life under discussion, not his. I'd keep my ACE inhibitor where it is. I am a big believer in ACE inhibitors. That's all just what I would do personally, based on my experience - not yours - which I don't really know. ;-) Jon.


Steve Martin's May 29 reply to Katherine H's May 24, 2002 - Hi, After my cardiac arrest in January of 1998, I received an ICD. After a 6-month recovery, I got a different, low stress job, and everything was pretty good. My EF came up to the mid 30s. I was comforted to know that I had my own little paramedic in my chest. I had a few unsustained episodes of VT, but no zaps.
     In the summer of 2001, I noticed a significant drop in energy level, increased shortness of breath, etc. I received a Guidant biventricular pacemaker-defibrillator in October of 2001. I started to notice improvement soon after the implant. I feel as though the ventricular pacemaker has reversed the deterioration I was beginning to experience. I have more energy and fewer irregular heart beats. My doctor said there can be a very wide range of improvement. I'm satisfied with mine. Living with a pacemaker has been no big deal.
     I hope this helps. Feel free to e-mail me if you have any questions. stevemartin50@earthlink.net


Ruthie A's May 29 reply to Patrick's May 28, 2002 - Hi Patrick, The only problem I have with cutting pills is that I am not absolutely sure I get exact size, thus possibly changing the amount of medication I take in a given day. If the pills are scored, it is still possible to get an uneven division. If they are not scored, it is most likely the division will be uneven. While pill cutting is a good way to cut costs, is it worth the price if you are not getting the dosage you need? What does your doctor say about it? Mine does not want me cutting pills. He would much rather I substitute a cheaper version that may not be as effective than not control the amount of medicine I take each day. Just a thought, Ruthie A. rlaba51@yahoo.com


Joe S, May 29, 2002 - Hi, Well, 3 months after having the surgery I finally got some anwers. A nurse from my drunken surgeon's office sent me the operative report. It states categorically that I had single vessel coronary disease in one artery and that is the one that was replaced, so my cardiologists were wrong. I no longer have coronary artery disease. It pays to get second opinions even from a nurse, Joe S. jes@gbis.com


Vicki's May 30 reply to Jon's May 29, 2002 - Hi Jon, Thank you for your input. I have never understood why I was on Lanoxin. I know that I felt more spacey-headed than usual when I started taking it but my cardiologist said that was impossible. He said that Lanoxin would not have that side effect. I have never had a-fib. What you say makes perfect sense to me. I think I'm going to get another opinion from a different cardiologist. This will be my third one in a year! Thank you so much for taking the time to respond. I'll keep you posted. Snevetsii@aol.com


Shannon's May 30 reply to Joe S' May 29, 2002 - Hi Joe, Sorry but I am respectfully disagreeing with you. You do have coronary artery disease (CAD). It may have only been in one artery and it may be now bypassed, but you are still considered to have CAD. I think that in another post you mentioned the Zocor you were taking. That was probably prescribed to you to increase your odds that other blockages will not occur or progress, especially in the artery that has been bypassed. A bypass is not a permanent fix. Even under the best of circumstances, a bypass may only last 8 to 10 years. Take care, Shannon. Sthomp1826@aol.com


Tom S, May 30, 2002 - Hi, I've been cutting pills in half for several years at the direction of a doctor, primarily Coumadin. I have had little trouble in doing it with my fingernails. I found that one of the little pill cutter do-hickeys crushed the pills and I had trouble with the halves jetting off to parts unknown until someone stepped on them and they became a white splat on the carpet or hardwood floors. bhigheart@hotmail.com


Carol O's May 30 reply to Jon's May 25, 2002 - Hi Jon, You asked me if I had been checked for dehydration since I have recently had SOB, fatigue and loss of appetite. No, I haven't been checked. How would my cardiologist check me for dehydration? Are there any other tests that my cardiologist should be doing? I am also going to ask to have my potassium level checked, since it has probably been 6 months since the last test was done. Thanks, Carol O, DCM, EF 15%. cao999@ameritech.net


Jon's May 30 reply to Carol O's May 30, 2002 - Hi Carol, A high blood sodium level is often caused by low blood volume, which means possible dehydration. Sodium is an electrolyte. Medicare requires (most hospitals and labs base their "panels" on Medicare requirements) a standard "lytes panel" and BMP (basic metabolic panel) to include serum sodium level. So, looking at the results of a standard electrolytes blood test or standard BMP blood test will help spot signs of dehydration.
      Also, a CHF doctor's exam should include checking for physical signs of dehydration. Osmolality can also spot dehydration but that isn't a standard test. See this Tests page for more on blood testing.
     I mentioned this originally because heart failure-like symptoms without weight gain can come from dehydration or a drop in cardiac output (which can be spotted with a 5-minute echocardiogram). I hope this helps, Jon.


Tim S, May 30, 2002 - Hi, I am 41 yrs old and have CHF. I had a heart attack and open heart surgery when I was 39. They did a quadruple bypass on me and my EF was 40%. This January I had trouble breathing and had an echo done, and the doctor said my EF was down to about 20%. He sent me for a cath but I had an allergic reaction to Versed and almost died during the procedure. When I came out of it, they said my EF was closer to 10%. They started me on Coreg and digoxin, along with diuretics and ACE inhibitors.
     I don't feel any better yet but I haven't gotten any worse either. My problem is weight gain. I have put on about 22 pounds since starting treatment, after I went on a low sodium diet and started a cardiac rehab program in which I am up to 45 minutes of continuous exercise. I thought I read somewhere that taking Coreg and digoxin at the same time could cause rapid weight gain but I can't find that information again. Does anyone else have the same problem? tgsheeks@wcnet.org


Paul, May 30, 2002 - Hi, I'm new here, and was diagnosed with CHF after my second heart attack in 1998 at age 43. I can no longer work as a probation officer due to fatigue and inability to keep up, so I am faced with the choice of living on a small disability check that would pay for insurance, meds and a bit else while living with a family member, or trying to find another job and remain independent. However, I would lose my insurance if unable to keep up. It's a tough choice. Has anyone else been in a similar situation? My heart appears to have stabilized the past year above the SSD line, but my fatigue lingers. Any thoughts would be appreciated. peradhua@charter.net


Dan Hunt's May 30 reply to Vicki's May 29, 2002 - Hi Vicki, I think that the fewer drugs you have to take, the better. I am not a physician either, so all I say is based on my personal experiences and conversations with health care professionals. Long-term use of digoxin can build levels of the drug in your liver so anyone taking digoxin long-term ought to have liver enzymes checked from time to time. I hated Coreg when I tried it. It caused a number of side effects in me like dizziness, lightheadedness, and sleeping problems. I switched to Toprol-XL but if I had your EF, I'd fight to get rid of the Coreg too.
     The Zestril I'd also get rid of if possible, and take something more natural to keep blood pressures down, something like garlic or licorice (real licorice, not the kind sold in candy stores). Zestril is a drug that can damage the kidneys with long term use. As I always told people when I gave talks about heart disease and stroke prevention, diet and exercise, for the Heart Association (unfortunately, they only want degreed professionals now), if you feed your body the right things and exercise properly, your body can do remarkable things. Only use the drugs when your body needs the help. danpatricia.hunt@prodigy.net


Jon's May 30 reply to Dan Hunt's May 30, 2002 - Hi Dan, I understand that you are commenting on your personal experience and I respect that. I base many of my remarks about treatment on my own experience too. It's a good guide in some ways. However, I also do extensive reading and talk to a lot of CHF specialists as well as a lot of CHFers themselves. I often have to modify my own opinions when they clash with generalized truths. Obviously, in any given person a treatment may have a completely different or unexpected effect, but I try to talk to the general experiences we are most likely to have.
     I personally sympathize with a desire to get rid of drug side effects - both the ones that bug us now and the potential ones down the road. I have had my share of problems with CHF meds' side effects and it makes me a little crazy at times, especially since some of the effects I have suffered are permanent. I agree that taking the fewest drugs to get any job done is best. The problem is always figuring out where to draw the line.

As I try to make clear on my site, heart failure is not just a matter of heart function - many bodily systems are changed, perhaps permanently. No one knows if these changes ever completely reverse. These systems (the RAS and neurohormonal systems) can come back and bite you hard if you quit all your meds when your EF improves.
     I agree with Paul that taking drugs without a good reason is nuts. However, I am seeing more and more readers in the same sad boat - coming back here after their EF rises to completely normal and stopping their CHF meds on their doctor's advice, then falling back within a year or so into serious heart failure.
     It's very important not to oversimplify what our meds actually do. ACE inhibitors are not given to CHFers as blood pressure drugs. This is critical to remember. They reduce the action of angiotensin II by inhibiting Ace Converting Enzyme in your lungs. One effect is lowered blood pressure through the better relaxation this brings to our blood vessels. However, that is not the primary reason we take them. ACE inhibitors prevent the very neurohormonal problems that weaken our hearts in the first place from coming back and weakening our hearts again. This is explained in more detail on the ACE Inhibitor page.
     All heart failure specialists now recommend that we stay on ACE inhibitors and possibly beta-blockers for life after suffering chronic heart failure. See the official guidelines 2001 update In my opinion, it's worth trying to drastically reduce your beta-blocker dose if your heart function returns to normal because you are taking a preventive measure, not actively trying to reverse remodeling any longer. It may only take a small dose to fight a rear-guard action. ;-) However, I don't know how wise it would be stop them completely, especially if you have CAD.
     ACE inhibitors come in all flavors and if you are worried about your kidneys, you can switch to Monopril (fosinopril), which is eliminated through the liver as well as the kidneys. However, patients with weak kidney function taking ACE inhibitors tolerated them extremely well in clinical trials. See results of the ATLAS trial, in which high doses were studied. (let it load)
     I guess what I am trying to say in my usual rambling way is not to jump the gun. If your heart function improves clear to normal levels, try removing the meds least likely to help prevent future problems. Right now, that would mean stopping digoxin, diuretics, spironolactone, and then possibly beta-blockers. However, be very cautious about stopping ACE inhibitors, and consider staying on a low dose of beta-blocker as well. The potential price for stopping all your meds is just too high. Jon.


Karen K's May 30 reply to Dan Hunt's May 30, 2002 - Hi Dan, I saw your post regarding using licorice to lower blood pressure. I found the following doing an Internet search:

The herb licorice contains a substance called glycyrrhizin. When taken in high enough amounts, glycyrrhizin produces effects similar to the natural hormone aldosterone, causing fluid retention, increased blood pressure, and potassium loss. Some recent studies found that even licorice-containing candy can raise blood pressure. Source: www.tnp.com/news/article/370/
Licorice causes increased production of aldosterone, a hormone that regulates the salt and water balance of the body, resulting in a rise of blood pressure. Do not use licorice root if you have diabetes, edema, heart disease, high blood pressure, kidney disease, severe menstrual problems, glaucoma or history of stroke; May cause headaches, high blood pressure, fatigue, stomach upset, diarrhea, facial puffiness, ankle swelling, edema, grogginess, weakness, or shortness of breath.
     Licorice root should not be used on a daily basis for more than 7 days in a row because it can affect the body's electrolyte balance, retaining sodium but depleting potassium. This can lead to high blood pressure and edema. Licorice candy does not offer the same benefits as preparations made from the root, but can also cause high blood pressure. Licorice may increase the risk of bleeding when taking Coumadin. Source: Am J Health Syst Pharm 2000 Jul 1;57(13):1221-7; quiz 1228-30. Potential interactions between alternative therapies and warfarin.

Karen. karenk@mchsi.com
 
Jon's note: Also, see the herbs page and the alternative page (let them load)


Jon, May 31, 2002 - Hi everyone, The following pages on my site have been updated or added:

If you are on my mailing list, you can skip the Coreg page update because I sent most of it out as a mailing today. Jon.


George M, May 31, 2002 - Hi, I have questions about the amount of heart muscle damage can one have and still maintain a decent quality of life. My doctor seems to be holding back to keed me from getting excited. I have been told that I have lost 50% of my heart muscle and have an EF of 20%. This is from 4 heart attacks. The last one was the closing of stents (3) from the third hear attack. I have heard that 60% of the heart muscle can be lost and still live. I would like to hear if anyone has info. Thanks. gm286@aol.com


Jon's May 31 reply to George M's May 31, 2002 - Hi George, You can lose much more than 60% of your heart function and maintain good quality of life - maybe. Talking about the death of a certain percentage of the muscle itself is misleading because QOL would depend on exactly what parts of the heart died, whether the muscle in each location was truly dead or hibernating, and whether hibernating tissue could be revived.
     QOL varies hugely from one person to the next even when their heart damage is exactly the same. It really just depends on how your individual body responds to the damage done. I was diagnosed with no heart attacks but an EF of only 13%. I now have an EF of 40%, almost 8 years later. Obviously, my situation is different than yours but it does show that a low EF does not mean certain doom. ;-) Jon.


George S, May 31, 2002 - Hi, I want to reinforce a point Jon and others have made throughout this wonderful and educational site: get a second opinion, especially one from a CHF specialist. Having been diagnosed with heart failure on May 10th, I could get very little information (less of it accurate) from either my primary care doctor or my newly found cardiologist. What these two doctors were saying (which was very little) made no sense to me. When challenged with facts from this site as well as a thorough reading of Dr Marc Silver's book as recommended here, I got no satisfaction.
     I fired both the jokers and I found an absolutely competent CHF specialist doc with 2 assigned nurses who do nothing but heart failure treatment out of the St. Thomas Advanced Heart Failure Clinic here in Nashville. Within 2 hours these professionals answered every question I had and then provided additional information. Their entire emphasis was on making certain I had the right answers.
     The difference in my peace of mind, confidence in the medical care I'm now receiving, as well as actually feeling better, cannot be overemphasized. Please don't sit on your bum and wish you had more professional medical care - go make it happen. It's well worth the investment in time and energy. If you're having a problem confronting your current doctor or don't know how to find a CHF specialist after reading Jon's stuff, drop me an e-mail and I'll talk you through what worked for me, George. george.selin@myppi.biz


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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