The paperwork never ends The Archives
April 1-15, 2003 Archive Index CHFpatients.com

Cat 4-1     calcium channel blocker & supplement question
 
Tom's 4-1 reply to Valerie R's 3-31     exercising
 
Vicki 4-1     what does this medspeak mean?
 
Lori K 4-1     thanks for cautions and more
 
Susan G's 4-1 reply to Mel G's 3-31     thanks for the message
 
Debbie R 4-1     seek amiodarone experiences
 
Barbara H 4-1     what does this mean?
 
Ruthie A's 4-1 reply to Lori K's 3-31     similar experience
 
Joyce 4-1     Coreg and diabetes question
 
Jon 4-2     mailings, Ticket to Work question
 
Valerie R's 4-2 reply to Tom's 4-1     exercise
 
Derald G 4-2     regional news
 
Sam 4-2     eplerenone
 
Cheryl's 4-2 reply to Jon's 4-1     Ticket to Work program from Social Security
 
Jon's 4-2 reply to Cheryl's 4-2     Ticket to Work program from Social Security
 
Steve H's 4-3 reply to Debbie's 4-1     amiodarone experience
 
Tracey C 4-3     low sodium cheese brand
 
Cristina L 4-3     would like to poll real CHFers for med center
 
Tom S' 4-4 reply to Tracey C's 4-3     low sodium cheese company
 
Mike 4-4     Social Security Disability questions
 
Ruthie A's 4-4 reply to Jon's 4-2     vocational rehab possibility
 
Dan R's 4-4 reply to Debbie's 4-1     ICD & amiodarone experiences
 
Jon 4-4     mailings, doctors
 
Linda O's 4-4 reply to Ruthie A's 4-4     back problems and implanted devices
 
Kim's 4-4 reply to Jim T's 3-29     hospice
 
Kim 4-4     why is my dad doing worse instead of better?
 
Valerie R's 4-5 reply to Kim's 4-4     my heart failure pacemaker experience
 
Bobbie 4-5     what kind of weather is hardest on CHFers?
 
Jon 4-5     page updates
 
Tom S' 4-5 reply to Bobbie's 4-5     climates
 
Valerie R's 4-5 reply to Bobbie's 4-5     climates
 
Myrtle C's 4-5 reply to Jim T's 3-25     hospice experience
 
Mike W's 4-5 reply to Bobbie's 4-5     climates
 
Angie H's 4-5 reply to David Wilson's 3-26     weight reduction surgery
 
Angie H's 4-5 reply to Lori K's 3-31     statins can cause this also
 
Ruthie A's 4-7 reply to Bobbie's 4-5     climates and more
 
Linda's 4-7 reply to Angie H's 4-5     weight loss surgery experience
 
Bobbie 4-7     thanks for advice
 
Ann N 4-7     is getting used to Coreg always this bad?
 
Dave K's 4-7 reply to Bobbie's 4-5     climates
 
Jon 4-7     page updates
 
Lee 4-7     seek pacemaker/ICD experiences
 
Cheryl's 4-7 reply to Angie H's 4-5     weight loss surgery
 
Brandy's 4-7 reply to Kary W's 3-31     heart failure doctors in Oklahoma
 
George B's 4-7 reply to Bobbie's 4-5     Kansas City weather
 
Ralph F's 4-7 reply to Anita C's 3-27     how did you raise your EF?
 
Jon 4-7     page updates
 
David Wilson 4-7     seeking surgeon closer to home
 
Terri 4-7     seeking others in the same boat
 
Pen 4-7     is my EF going down? & more
 
Klista 4-7     seek transplant recipients who are doing well
 
Jon's 4-7 reply to Klista's 4-7     cardiac index
 
Joanne R's 4-8 reply to Ann N's 4-7     adjusting to Coreg experience
 
Jon 4-8     page updates
 
Kathleen 4-8     seek people who have stopped Coreg
 
Valerie R's 4-8 reply to Terri's 4-7     ICD/pacemaker experience
 
Jon 4-8     page updates
 
Angie H 4-9     how should we eat?
 
Kathleen's 4-9 reply to Jon's 4-8     coming off Coreg
 
Jon's 4-9 reply to Kathleen's 4-9     coming off Coreg
 
Margaret D 4-9     which test measures EF better?
 
Tony Paris 4-9     can I ask my doc to change my meds?
 
Donna's 4-9 reply to Angie H's 4-9     low carb eating experience
 
Jon 4-10     page update
 
Loretta D's 4-10 reply to Angie H's 4-9     low-carb diet experience
 
Loretta D 4-10     software suggestion
 
Tom P's 4-10 reply to Barbara H's 4-1     quick fluid loss
 
Tom P 4-10     seek opinions on restarting Coreg
 
Lydia M 4-10     what is this muscle pain and stiffness
 
Jon's 4-10 reply to Lydia M's 4-10     muscle pain and stiffness
 
Wayne 4-10     EF and exercise question
 
Jacky's 4-11 reply to Tom P's 4-10     Coreg experience
 
Natalie K 4-11     getting a CHF specialist
 
Pen 4-11     seek Coreg experiences
 
Tom W's 4-11 reply to Tom P's 4-10     Coreg & CoQ10 experience
 
Eris D 4-11     some great news!
 
Ben B's 4-12 reply to Eris D's 4-11     that's great news!
 
Pat H 4-12     tell me about CoQ10
 
Valerie R's 4-12 reply to Eris' 4-11     that's wonderful
 
Vicki 4-12     seek opinions on drug changes
 
Angie H 4-14     seek experiences with Viagra
 
Tom S 4-14     prayer request
 
Tom P's 4-14 reply to Pat's 4-12     CoQ10 and more
 
Dan R 4-14     seek experiences with Natrecor
 
Brandy 4-14     weird feeling in throat - anyone else?
 
Eris D 4-14     what drugs to take after heart is better?
 
Jon 4-14     new page is done
 
Jon 4-15     interruption of service
 
Angie H 4-15     Viagra experience
 


Cat, April 1, 2003 - Hi, Calcium supplements and vitamin D can interact with calcium channel blockers, so what does one take who also has osteoporosis? Any input would be appreciated. lafsalot2000@yahoo.com
 
Jon's note: I believe you should take any calcium supplement either 2 hours before or 2 hours after taking your calcium channel blocker. Do you have pulmonary hypertension or diastolic heart failure?


Tom's April 1 reply to Valerie R's March 31, 2003 - Hi Valerie, Gee, it takes me 20 minutes to do 0.5 miles. Tom. brhisinc@skybest.com


Vicki, April 1, 2003 - Hi, I was diagnosed with cardiomyopathy 2 years ago. I am on digoxin, Zestril, and Coreg. I have recently been having trouble with my blood pressure dropping extremely low (68/37) and a very weak pulse at around 50 beats per minute. Needless to say, I was feeling pretty bad. My doctor had me wear a Holter monitor for 24 hours. His nurse called today and left a message that I am to quit taking the digoxin to "improve conduction at night." What in the world does this mean? Snevetsii@aol.com


Lori K, April 1, 2003 - Hi, Thank you Valerie and Karen for your warnings on boost and power bars. I have been watching sodium content primarily. I am not on Coumadin and my heart rythym has been okay outside of my left bundle. This muscle pain and weakness has been the thorn in my side. I also stopped exercise for awhile and my CHF doc said, "If there is one thing that almost always helps us feel better, it's exercise" so I plan to get back on my treadmill as soon as my muscles can handle it. Thanks for the feedback. thegoof86d@aol.com


Susan G's April 1 reply to Mel G's March 31, 2003 - Hi Mel, You made my day! I hope you're right. Thank you, Sue. suekgpc@hotmail.com


Debbie R, April 1, 2003 - Hi everybody, I haven't posted for quite sometime but I have just had a go round with my heart and want to know if anyone else is on amiodarone (Cordarone). I'm sure some of you are.
     I have an ICD and it's been in my chest since 1998. I'm in a study with Good Samaritian Hospital here in Los Angeles. I haven't ever needed it till February 25th when it woke me up, then again on March 14th twice and on the 15th, 16th and 17th. I was in the hospital for the last 2 shocks. I wasn't quite as scared for those. Thank goodness for my own personal EMT (I saw someone else call it that and thought that is quite appropriate, and cute too).
     Anyway, that is the new med they put me on, suggesting that I had some sort of irritation in my heart that was causing my ICD to go off - and it was going off when it needed to do so. I have had some trouble getting used to this new med. I am dizzy and not quite as clearheaded. Does anybody else have any comments or dealings with this drug? Thanks, Debbie R. Debbiedo55@aol.com


Barbara H, April 1, 2003 - Hi all, My dad has CHF and I am posting on his behalf. I am wondering if anyone can help with our latest question. Last week, after having a few dizzy spells he went to the doctor and as part of a battery of tests and slight medication adjustment (decreased his zestril dosage) his doctor told him that he is losing too much water. I've been trying to find out what this means, but am at a loss. Thanks again. Barbara. BarbHutter@yahoo.com


Ruthie A's April 1 reply to Lori K's March 31, 2003 - Hi Lori, Don't worry about the aches and pains; your doctor is probably correct. I am going through the same thing right now. My hubby had it first and decided to be generous and share! :-( This virus is going around our city like gangbusters these days, following a lot of severe pneumonia (not SARS, thankfully). Oh well, this too shall pass. Ruthie A. rlaba51@yahoo.com


Joyce, April 1, 2003 - Hi, I will be asking the doctor but thought I would run my question through on the message board in case someone else has dealt with this. My husband started on insulin and so far is at 20 cc. This will be raised this week I am sure since his blood sugar is still around 300.
     If Coreg raises blood sugar and a person takes insulin to lower blood sugar, how will this affect the effectiveness of Coreg? It seems like a vicious cycle of meds and docs. Now he has a kidney specialist because his kidneys are showing signs of damage. jas48@webtv.net
 
Jon's note: Coreg's effect on blood sugar is a side effect. The insulin should not directly affect Coreg's effectiveness. However, he will need to watch his blood sugars even more carefully while on Coreg


Jon, April 2, 2003 - Hi everyone, More mailings are on the way so if you want to receive them, just sign up at www.chfpatients.com/lists.htm. Also, no one e-mailed me about the Social Security "Ticket to Work" program. Has no one used this? Jon.


Valerie R's April 2 reply to Tom's April 1, 2003 - Hi, Thanks Tom, You make a gal feel good. However, I have not even gotten to 20 minutes yet. Valerie. vgrogers@aol.com


Derald G, April 2, 2003 - Hi, Just a sad note: Finances are so bad in Oregon right now that the state has dropped everyone without private insurance off the transplant lists because the state can't afford the anti-rejection drugs for Oregon Health Care patients. eraldg@earthlink.net


Sam, April 2, 2003 - Hi Everyone, I posted here a few months ago about a drug called Inspra (eplerenone), an aldosterone blocker. The manufacturer presented positive data at a cardiology conference this week. It hasn't been officially approved by FDA for heart failure yet. Sam. inthemist2003@yahoo.com


Cheryl's April 2 reply to Jon's April 1, 2003 - Hi Jon, I am not using the Ticket to Work program, but I have a friend who is in the process of using it. I'm not sure what you know about it. It's a program to allow people on disability to return to school, get the training that they need and then try to return to work. I know you can go to school up to 4 years and you aren't reviewed during that time. My friend is taking accounting classes. That's about all I know on that subject. Cheryl. Perruchee@aol.com


Jon's April 2 reply to Cheryl's April 2, 2003 - Hi Cheryl, I have received the official Ticket to Work itself, along with what amounts to a subtle ultimatum: Give this a try or face a review soon, and I am indeed due for a review. This system seems to require working with one employment agency involved in the program at a time to find work. There is no mention of adult education being available through the literature they sent me - it's one of those "Talk to us to find out more" deals. I guess I will. Jon.


Steve H's April 4 reply to Debbie's April 1, 2003 - Hi Debbie, I am on amiodarone also. I had taken it for 2 years and I also got dizzy and have most of the listed side effects. I went to the doctor 6 weeks ago and was doing so well the doctor decided I could try not taking it. He said my EF was about 50% and that my heart had shrunk back to almost normal. He decided to take me off to try and help me because of the side affects. He said it would take about 2 months to get off it and to really watch myself closely.
     Last week I got dizzy and decided to listen to my heart. It was in a-fib and beating very fast. I spent 4 days in the hospital getting amiodarone pumped back into me. My heart went back to normal beats and I got to come home. I am now taking 1600mg a day where I was taking 200mg a day. I don't like the side effects but the alternative for me is worse. I hope this helps. Steve. aholland@alltel.net


Tracey C, April 3, 2003 - Hi everyone, My local Ralph's Market in southern California found a low sodium cheddar for me and keeps it on the shelf. It's awesome, with real ingredients and tastes just like Tillamook's low sodium cheese which I used to order until it was discontinued. It's great because unlike Hellava, it does not use a salt substitute. It is made by American Heritage. I could find nothing online about them, but the dairy buyer found it for me. Call your local market dairy managers and see if they can find it for you. Take care. 2tcollins@cox.net


Cristina L, April 3, 2003 - Hi, I have been recently asked to participate on the Heart Failure Committee at Hackensack University Medical Center, which is located in New Jersey. They have asked me, as a patient, to come on board so that I can assist them and help them out in being a patient advocate. They want me to tell them things that I think need to be addressed, not just for their heart failure, but even general things such as healthcare.
     I would like to ask some questions to you - the public. My first question to all of you is, does anyone else go to the Heart Failure at Hackensack (HUMED) and secondly, what kind of things as a patient would you like to see changed or need help on understanding? Please reply by e-mail to clisa@ridgewoodcapital.com


Tom S' April 4 reply to Tracey C's April 3, 2003 - Hi, I don't know if this will be any help but I did find a listing for an American Heritage cheese company at www.vrg.org/nutshell/cheesebybrand.htm. Who knows? With a little more searching you might even find an online supplier. bigheart@muchomail.com


Mike, April 4, 2003 - Hi, Does anyone know how often you will be reviewed and how soon they do it? I just started getting my benefits after being turned down twice and am not looking forward to going through that again. I'm 58 years old and have been in heart failure about 3 years with a EF of about 35% and chronic a-fib. Thanks. msisbell@earthlink.net
 
Jon's note: See www.ssa.gov/pubs/10029.html#part3f


Ruthie A's April 4 reply to Jon's April 2, 2003 - Hi Jon, I have not heard of the Ticket to Work program since I am not on Social Security disability. However, just yesterday I found out I was eligible for benefits from Vocational Rehabilitation solely on the merits of my CHF. It's funny that my severe arthritis and back problems had nothing to do with my eligibility. Go figure.
     Anyway, vocational rehab is funded by money from both the state and federal governments, so I am sure you have offices in your area. Their job is to spend whatever money it takes to put you into a meaningful job that you can do with your limitations. If you require schooling, they send you to school. If you require tools or other equipment, they buy it. I will be getting an electric scooter among other things, so I can get around by myself, something I cannot do right now. I don't know if you would be allowed to go through the program but it sure wouldn't hurt to check it out. Ruthie A. rlaba51@yahoo.com


Dan R's April 4 reply to Debbie's April 1, 2003 - Hi Debbie, I have been on amiodarone for quite some time. I also have an ICD. Mine went of 3 nights in a row at 2:00 AM so my EP doctor disconnected the lead so it wouldn't shock me anymore. I was in a-fib and the amiodarone wasn't doing its job, and niether did 3 cardioversions, so last week I had an ablation done, but it failed. The doctor sent me to Loyola in Chicago to see a Dr. Wilber to see if he could try again with an ablation because they have better equipment there.
     Oh, I didn't tell you that I went from a-fib to a-flutter, that is why they were able to do this ablation. The doctor put me back on amiodarone so I will be on it when he does the ablation. He wants to get all the fluid out of my belly and ankles first. I don't know if I was a help or not but I guess I got my vent out anyway. Dan. dryan6659@aol.com


Jon, April 4, 2003 - Hi everyone, Another mailing will go out this weekend. If you want to receive mailings, be sure you have signed up at www.chfpatients.com/lists.htm. Also, I urge everyone to use the urls available at www.chfpatients.com/urls.htm. This is a very valuable resource - I use these urls myself to find answers to readers' questions. Finally, please ask your CHF specialist to list his practice here. Just give him this url: www.chfpatients.com/docs/docs.htm. If you get the urge and spot a CHF clinic online, please feel free to e-mail them and ask them to list their practice here as well. ;-) Jon.


Linda O's April 4 reply to Ruthie A's April 4, 2003 - Hi Ruthie, I was wondering if you are able to get any relief for your back problems? I finally got acupuncture at the Nebraska University Hospital in Omaha and it has improved my quality of life at least 200%. I am now in line for an ICD with a pacemaker. I really do have hesitations because I am no longer able to have electrical stimulation and ultrasound, which is deep heat at physical therapy. I know, I know, but the being alive and spending so much time in pain and bed almost make me scared. I hurt my back the first time in high school and then got 2 broken discs in the 1960s. I have had a bad back longer than my physical therapist has been alive. Linda Oline, age 63, EF 20 to 25%. lnoline@hotmail.com


Kim's April 4 reply to Jim T's March 29, 2003 - Dear Jim, Who is recommending hospice for you? Are you refusing treatment? Do you live alone? My mother (who does not have CHF) is with hospice at home at this time because she refused to continue to see doctors and refused to be admitted to a hospital for treatment. You should go ahead and call hospice and they will tell you exactly what they can do for you and you can decide for yourself if it's for you. Also, you can stop their service at any time. My dad has CHF and has been class 4 for the last 6 years, but with each setback he has been willing to try new treatments and medications. Right now he's not doing so well but is still hopeful. Good luck, Jim. kimhilscher@hotmail.com


Kim, April 4, 2003 - Hi, My dad just had a pacemaker/ICD implanted 2/27. Since then he has had trouble with fluid retention. He has been admitted twice and given IV Lasix. During the second stay he was given the whole shebang of tests again and the tests all came back great, along with the pacemaker doing its job.
     However, he seems to be doing worse. He feels terrible, is not sleeping, and has all the classic CHF symptoms. Actually, in the past 2 weeks he has the new symptom of cerebral dysfunction. I don't understand why the cardiologist didn't fill us in on this symptom. He was told dad was having periods of confusion. Dad is, and has been extremely depressed and anxious, which is totally unlike him. His cardiologist did refer him to a neurologist for this. Does anyone have any ideas on this? kimhilscher@hotmail.com


Valerie R's April 5 reply to Kim's April 4, 2003 - Hi Kim, Exactly which ICD/pacemaker did your dad get? I'm curious because I got a Medtronic Insync around December 6th. Seven weeks later I had all the CHF symptoms. We - my cardiologist and I - had the pacer turned down and my symptoms improved 95%.
I went to see surgeon just this last Wednesday. He thought my right atrial lead might have fallen and had me take an x-ray but it had not been displaced. He then "tinkered" with the little laptop and got all 3 leads working again. I'm not too sure I'm happy about this. He promised he would speak to my cardiologist but I think I will follow through on that myself.
     My problem is that I have just been put back on my old meds. Now if I have problems, I won't know if they are coming from the pacer or meds. Anyway, that's my experience. Stay tuned. Valerie. vgrogers@aol.com


Bobbie, April 5, 2003 - Hi, I am a CHF patient (diagnosed 2 years ago) after moving to Kansas City, Missouri, USA. I have been run around and around by physicians. It took 5 months of running around from doctor to doctor before my condition was finally diagnosed (edema). Because of the secondary pulmonary hypertension, I was told that I did not need to see a cardiologist, but rather a pulmonologist. I have become totally exasperated and am just coming off 2 months of basic incapacitation.
     I understand that cold weather as well as extreme humidity aggravates this condition. Unfortunately, I'm in a place that has horrible climate all year round. I have just about decided it is time for me to move out of the area. My concern is what is worse the cold or the humidity. I'm looking at moving south to Tennessee. bmorr7@yahoo.com
 
Jon's note: In my personal opinion, humidity is harder than cold for CHFers


Jon, April 5, 2003 - Hi everyone, The nutrients page, The Manual, the exercise page, and the official heart failure treatment guideline page have been updated. Jon.


Tom S' April 5 reply to Bobbie's April 5, 2003 - Hi, Hot weather definitely is harder to cope with for me. The last two summers have been particularly hard since our air conditioning system is not particularly efficient and we live in central North Carolina where humidity often hovers in the 80% to 90% range. I have also lived in Tennessee - Memphis in particular - and it really depends on where you are planning to relocate.
     Years ago, the state used to advertise the "Three States of Tennessee" which alluded to the fact the state is neatly divided into 3 distinct geographical sections by the Tennessee River (which is the only river that flows north) and 2 time zones. Starting at the flatlands of the Missisippi and Memphis (where I lived) offers reasonably mild but wet winters, lovely springs, and blazing hot and humid summers. I found Memphis more oppressive than any I have yet to experience in North Carolina, and that was when I was healthy. The central part of Tennessee is hillier and thus somewhat milder climate, and includes Nashville as it's only major city. It also experiences 4 seasons and often is blanketed with heavy snows, unlike Memphis.
     Eastern Tennessee is mountainous and has become a favorite retirement area for what we call "Yankee snowbirds." Eastern Tennessee and western North Carolina share pretty much the same climate with fewer hot summer days, much cooler and usually rainy nights, and lower humidity. It used to be a favorite summer getaway for the early 20th century robber barons like George Vanderbilt, who caused a monstrous summer "cottage" called Biltmore to be constructed at Ashville.
     Of course if you have a good air conditioning system in your car and home, you can live almost anywhere in the South. Stores, shopping malls, public buildings, schools and churches all usually have outstanding air conditioning sytems, which squeezes the humidity out of the air, so you usually find yourself freezing in those places rather than being too hot. I have lived in Tennessee, Florida, Louisiana, and now North Carolina, so I believe I know a little about the south and it's climate. I have also lived in the north (upstate New York) and I would never move back there again no matter how hot and humid it gets here. bigheart@muchomail.com


Valerie R's April 5 reply to Bobbie's April 5, 2003 - Hi, I've lived in Miami, Florida, all 8 years I've had CHF but as a teacher I have traveled every summer. Lately I have noticed the humidity is the worst for me. I enjoyed the cool/cold of San Francisco last summer and that of Jackson Hole and Yellowstone Park.
     However, my new air conditioner keeps the humidity waaay down and I bought a $360 dehumidifer for my classroom which works fairly well. I am going to have to move my treadmill into my living room soon but while not very decorative, that's okay. My only lack of success has come from trying to get my 38 eighth graders in each of 5 periods not to exhale! Valerie. vgrogers@aol.com


Myrtle C's April 5 reply to Jim T's March 25, 2003 - Hi Jim, My mother had hospice care when she was in end-stage heart failure. I only wish I had called them sooner. I will be glad to answer your questions, but as Kim said, they will answer all your questions. You may e-mail me if you wish to know how it worked for us. May the Lord grant you peace of mind as you make this decision. Love, Myrtle. omie@axs4u.net


Mike W's April 5 reply to Bobbie's April 5, 2003 - Hi Bobbie, I second Jon's opinion. The cold (I'm in northern New Jersey) gives me no problems but the heat/humidity tosses me to the ground. To be honest though, I was a cool/cold weather person before my CHF and have never liked warm/hot weather. I've always been more than an "ideal weight" also. ;-) Good luck, Mike Wafkowski. mikeyw@sohogurus.net


Angie H's April 5 reply to David Wilson's March 26, 2003 - Hi David, My friend had this surgery and has been very successful so far, however I do not reccommend it. The place she went treated her like a piece of meat. She was just a dollar sign to them. As a nurse, I thought they were very unprofessional and uncaring. The follow-up was very minimal. After 6 weeks you are discharged to your own doctor's care. I think a lot of psychological counseling is in order. The other day I heard a psychologist talking on a Christian psych talk radio I show I enjoy, and one of them said he is friends with Carnie Wilson and she regrets her surgery. The success rate is 80% or less. Many people gain the weight back, plus you are a great surgical risk - having heart failure. Just my 2¢ Angie. angieh@core.com


Angie H's April 5 reply to Lori K's March 31, 2003 - Hi, Muscle cramps, weakness, and spasms are all signs of a reaction to cholesterol lowering meds known as statins too! Check with your doctor. Angie. angieh@core.com


Ruthie A's April 7 reply to Bobbie's April 5, 2003 - Hi Bobbie, Like the others I have more problems with humidity than with the cold. I figure I can bundle and protect myself from cold a lot easier than wring the water out of the air. To what part of Tennessee are you thinking of moving? I used to live in Nashville and had an outstanding CHF specialist there. In fact, he saved my life!
     As Tom said, Nashville is rather hilly with a moderate climate, although winter can be a challenge at times. There is a lot of traffic, but the people are great, as long as you don't cut in front of them. <g> Shopping is pretty good too! ;-) I also lived in Johnson City in the far eastern part of the state. If you have any questions you think I might be able to answer, feel free to e-mail me. Ruthie A. rlaba51@yahoo.com


Linda's April 7 reply to Angie H's April 5, 2003 - Hi, I had bariatric gastroplasty when I was 19 years old. It was by far the best thing I have ever done. I cannot lie and say that I have not gained any back - I did - but I did learn what is was like to be thin, so the last year I have been on Weight Watchers and have lost 70.6 lbs. I am now at my goal, less then what it was after my surgery.
     My point is that it gave me confidence and the ability to know who I really was without all the fat involved! I hear people talk about how hard the sergury is. It's not a party but it is livable. My surgery only entailed getting my stomach stapled; I had no bands or any other stuff, just the 4 rows of staples. I hope this helps you some. I had it done 16 years ago and I am now married with a great hubby and 3 beautiful children. momxthreee@hotmail.com


Bobbie, April 7, 2003 - Hi everyone, Thanks for the input. I guess I'm between a rock and a hard place with CHF and PH. The dehumidifier sounds like a great idea. bmorr7@yahoo.com


Ann N, April 7, 2003 - Hi, This is my first time to post here. I had triple bypass surgery at the end of May, 2002, and developed water on my left lung (1.5 liters every 6 weeks or so). This was misdiagosed as Dressler's Syndrome. In January of 2003, a BNP test revealed CHF. I am in the process of switching to Coreg but feel just awful and don't feel up to doing anything but sleeping around the clock. I was up to 25mg but they cut my dose back to 18.75mg with no change in the way I feel. Is it normal to feel this horrible? Will I reach a point so that I can go back to work? How often should I be monitored and how often? eanall@aol.com


Dave K's April 7 reply to Bobbie's April 5, 2003 - Hi Bobbie, Before I was diagnosed I had chest pains and other symptoms of CHF. I just didn't want to admit it. You know: If you ignore it, it will go away. I worked for 2 months in the Florida keys after hurricane Georges. It was a new definition of heat and humidity. I would get up at 6:AM, walk from motel to car about 50 feet and sit in the car and I was wringing wet, and had to sit 10 minutes waiting for my chest to recover. I don't know how I survived the month. It's a very bad place to be for usens. dkreifeldt@yahoo.com


Jon, April 7, 2003 - Hi everyone, The surgery page has been updated. Jon.


Lee, April 7, 2003 - Hi, My cardiologist has recommended many times that I have a biventricular defibrillator implant. I am finally considering it and would greatly appreciate information from anyone who has had this procedure performed. Many thanks, Lee. lbutcher1@cfl.rr.com


Cheryl's April 7 reply to Angie H's April 5, 2003 - Hi Angie, I'm sure you speak of true experience with your friend. That's why it's very important to research your bariatric surgeon extensively, and the hospital you are going to use. That is not true about Carnie Wilson. I've seen her on talk shows and just now am reading her book, called Gut Feelings. She credits the surgery with saving her life. The statistics you quoted are wrong also. WLS has a 97% success rate, as opposed to a 95% failure rate of someone who is morbidly obese trying to diet the weight off and keep it off.
     My EF last year was 25%. My cardiologist put me on Coreg in July and in November I put myself on CoQ10. My EF was 45% last month. My cardiologist has okayed it for me now to pursue having WLS. I have an initial consultation on April 16th. I think it's a personal choice. I believe this is the only way I am going to have permanent results and hopefully, longevity. Cheryl. Perruchee@aol.com


Brandy's April 7 reply to Kary W's March 31, 2003 - Hey Kary, Dr. Jane Bare at Cardiology of Tulsa (918) 494-8500 is my cardiologist. I have seen one from every hospital in Tulsa. Dr. Bare is the most awesome and understanding doctor I know of here. I would highly recomend her, or one of her collegues. Brandy. brandy@ppcmsupport.net


George B's April 7 reply to Bobbie's April 5, 2003 - Hello Bobbie, I'm sorry you don't like Kansas City weather. I live here too. However, I like the changes in seasons. However, I have to have the air conditioner on in the summer or I cannot catch my breath. I can bundle up for the cold winter but I don't get to spend much time outside on those hot, humid days in the summer. I have to take breaks and cool off. Things that took one hour now take 2 to 3 hours with the breaks. I mow part of the back yard over several hours or days, depending on how muggy it is. Good luck, George B. gbratcher@kc.rr.com


Ralph F's April 7 reply to Anita C's March 27, 2003 - Hi, I acquired CHF in 1999, they say from a virus. At that time I had a 30% EF and now I have 20%. You said you had 13% at the outset and now you have 40%. How did accomplish that? RF136@aol.com


Jon, April 7, 2003 - Hi everyone, The BNP Test page has been updated. Jon.


David Wilson, April 7, 2003 - Hi, I appreciate the replies I have gotten on weight reduction surgery. I went to a public meeting on weight reduction surgery in Sedalia, Missouri. It was very informative. I want to have the surgery, but I want my PCP and cardio docs to support me. I will make appointments to see them before surgery to get their approval.
     My biggest problem is finding someone to do the surgery close to home. I can have surgery in Sedalia, St. Louis, Kansas City, Chicago, and Michigan. The closest places are over 200 miles away. I live in south central Missouri. Does anyone know of any surgeons closer to me? I think the benefits of surgery outweigh the risks for me. It seems the biggest risks are not waking up from anesthesia, and blood clots. All the surgeons I have contacted have excellent follow-up and that is why I would like someone closer to home, because traveling is hard for me. davybwilson@webtv.net


Terri, April 7, 2003 - Hi, I am a 35 year old female who recently went to a hospital for problems I had the day before they admitted me. That was the 13th of September and I was diagnosed in the emergency room with left bundle branch block, then cardiomyopathy, with a 10% EF. I had an ICD put in me, that with wires added, didn't help.
     The doctors brought me back 7 times in my town and once in Cleveland Clinic, where I was flown by helicopter with no hope but a heart transplant. Two 2 days later they were able to adjust the wires and get the Medtronic's Gem unit working. That saved me from needing a transplant as of now. Is anyone out there with similar problems? clownsrus21@aol.com


Pen, April 7, 2003 - Hi, I have CHF and dilated cardiomyopathy that was caused by a virus, and I also have lef bundle branch block. I was diagnosed about 2-1/2 years ago. Then my EF was 30 and it was 40% about a year and a half ago. I am on Coreg , lisonpril, Lanoxin, Lasix, and nexium.
     I was on 50mg Coreg in morning and 50mg at night but wasn't doing well so the doc lowered it to 25mg twice a day. I am not doing well on that dose either. I'm tired all the time and have shortness of breath but am not really swelling with fluids. The doctor has lowered my Coreg again to 12.5mg each time and lowered my lisinopril to 10mg once a day.
     He will run a MUGA sometime within the next 2 weeeks. He said if my EF has gone down again he wants to talk about an ICD/pacemaker. Does this sound like to you that my EF is going down? I thought maybe my heart was pumping better and that's the reason the meds are not agreeing with me anymore. Any advice or info will be appreciated! Thank you and God bless. pmp1658@hotmail.com


Klista, April 7, 2003 - Hi, My husband is currently Level 2 status waiting for a heart transplant. I'm wanting to find a patient who was at home prior to transplant who could do minimal work and felt pretty good. He is extremely scared since we know his heart is very bad. However he knows that going into this he will be trading in one set of problems for another. His EF is 14 and cardiac index is 2.
     Also, what are the normal rates for cardiac index? Emotionally, he is not ready. I'd love to talk to someone who is now doing well after transplant. Thanks, Klista. court@charter.net


Jon's April 7 reply to Klista's April 7, 2003 - Hi Klista, Cardiac Index = Cardiac Output divided by Body Surface Area. It is measured in liters/minute/meters squared). Cardiac output is the volume of blood ejected by the heart per minute - the normal range for CO at rest is 4 to 8 liters/minute. Body Surface Area is is calculated from a formula. Normal Cardiac Index is roughly 2.2 to 4.7 L/min/meter squared.
     You can find transplant recipient e-mail addresses at Me Too! and Heart Transplant Stories. Other sites that may help can be found through the transplant links page. Jon.


Joanne R's April 8 reply to Ann N's April 7, 2003 - Hi Ann, I don't know if it is any consolation but I've been through the same drill with Coreg and with time I have really gotten better. I was forwarned that Coreg would probably make me feel worse before it made me feel better, and it sure did. Now, a couple of years into treatment, I'm sleeping fewer hours out of each 24, unless I overdo and have to catch up, and I seldom find myself knocked upside the head by feeling ill.
     Stay in close touch with your medical support group. This does require monitoring. You may well feel much better as time passes. Either I am feeling better or I have learned to operate within my limits. In any event, it's working. Joanne. muddyrds@hotmail.com


Jon, April 8, 2003 - Hi everyone, The New CHF Meds page has been updated. I finally got the first low-sodium, low-carb recipe to Kitchen Corner as well. It is Moroccan Chicken, under the section "Main Dishes" on the Let's Cook page. More are coming soon. Jon.


Kathleen, April 8, 2003 - Hi, I am going off Coreg next week! Two years ago at age 37, I was diagnosed with peripartum cardiomyopathy after the birth of my first (and last) child. My cardiologist feels that I am in spontaneous remission because my EF has gone from 36% to 53%, even while titrating down from 50mg of Coreg to 3.125mg BID. The titration process started one month ago. Next week, I stop altogether.
     I am scared. I have heard about sudden cardiac death related to stopping Coreg. My cardiologist does not inspire confidence since he has never had the occasion of taking someone off the drug. Has anyone else ever gone off Coreg? I wish you all well and good health. Kathleen in Chicago. kaki321@yahoo.com
 
Jon's note: Why not stay at 3.25mg?


Valerie R's April 8 reply to Terri's April 7, 2003 - Hi, I am not familiar with the Medtronic Gem, but I had a Medtronic Insync ICD put in December 6th. I've had some really strange experiences since, including, we think, pacemaker syndrome. My surgeon got all 3 wires working for pacemaker after he tinkered for awhile last Wednesday, and he turned the pacemaker on again. My cardiologist had turned it off after I kept having very bad SOB and was not able to lie down at night. So far I'm okay but it's really too soon to tell. I feel it's an ongoing adventure.
     I do like having the ICD however. It gives me built-in security, so to speak. I have had CHF since 1995 with an EF of 15%. I have been, until I got a cold last Thanksgiving, extremely well compensated and I feel good right now too. The surgeon seems convinced I am going to notice a big difference with the pacer and that my blood pressure, which has really been low, will come up. I've learned to be cautious in my optimism. Valerie. vgrogers@aol.comJon.


Jon, April 8, 2003 - Hi everyone, I added a low-sodium, low-carb soup to Kitchen Corner. It is listed as "Mulligatawny" in the "Soup" category on the Let's Cook page. Jon.


Angie H, April 9, 2003 - Hi, How does everyone feel about diet? Is a low-carb diet recommended? angieh@core.com


Kathleen's April 9 reply to Jon's April 8, 2003 - Hi Jon, I am not entirely sure why I don't just stay at 3.125mg. My hypothesis is that even while titrating down, my MUGA results continued to improve, therefore indicating that my heart muscle had healed. Even working with a top cardiologist, this has been a very frustrating ordeal as I hear time and time again how "rare" peripartum cardiomyopathy is. I have to wonder all the time if they know what they are doing. Much of my treatment has been trial and error.
     Also, I think part of going off Coreg was in response to my inability to tolerate the drug and work full-time and raise a 2 year old. I think my cardiologist factored that in as well, when he decided to take me off the drug altogether. All of that said, I am in a much better place now and very fortunate. Although I will be a heart patient forever, I am grateful for the improvement. I am still scared about going off the drug next week and am praying nightly. Thanks for writing! kaki321@yahoo.com


Jon's April 9 reply to Kathleen's April 9, 2003 - Hi Kathleen, Well, my page about my attempt to stop Coreg is almost done now so I will be brief here. I am not a doctor. Personally, I believe it may be dangerous to some degree for heart failure patients who have taken Coreg for a year or more to go off it. I tried and failed. Even taking hydralazine 3 times a day did nothing to keep my blood pressure and especially my heart rate under control as my Coreg dose came down. I am now staying at my target dose (25mg twice a day) and plan to stay there indefinitely.
     I have a question for you: If you're unsure your cardiologists are certain of their treatment methods, why do you consider them "top" doctors? I hear from a lot of people who seem sure they have a "top" cardiologist and at the same time are uncertain of their own therapy. I hope no person with heart failure ever takes anyone's word - including mine - that any doctor is really good when that patient is not so sure of it himself. The proof is in the results and nowhere else!
     I wonder why your heart failure specialist (I hope he is!) has not suggested switching to Toprol-XL since it is only a beta-blocker and not both a beta- and alpha-blocker, thus it does not lower blood pressure as much and should not reduce your energy level quite as badly. Still, if it were me, I would just stay on the low-dose Coreg since a recurrence of heart failure would be much more serious to you and your child than a chronic mildly reduced energy level. Just my 2¢ worth. Jon.


Margaret D, April 9, 2003 - Hi everyone, I have a new question today. Which is more accurate for measuring EF, an echo or a cardiac cath? As a nurse I always assumed that a cath was the most accurate. Yesterday a CHF nurse told me that an echo is more accurate, which I find hard to believe. Anyone know for sure? mdavis10@tampabay.rr.com
 
Jon's note: Cath, hands down, this opinion verified by my research and 2 heart failure specialists


Tony Paris, April 9, 2003 - Hi everyone, Jon, I'm glad your feeling better. My EF is 20 to 24%. My pressure is low lately, I feel really beat down and I think it's from the low blood pressure. I was just put in the hospital to receive a Natrecor treatment to make me feel better but it did not work.
     Can I ask my cardiaolgist to change my meds? I take 0.125mg digoxin (Lanoxin), 20mg Vasotec, 12.5mg Coreg twice a day, 120mg Lasix twice a day, and 5mg Coumadin (warfarin). I have never felt this lightheaded and weak before. I have had IDCM 4 years now. Thank you and God bless you for this site. Tony. TParisck@rcn.com
 
Jon's note: You are in charge of your treatment, always, with the doctor a partner, not a boss. Did you have specific changes in mind?


Donna's April 9 reply to Angie H's April 9, 2003 - Hi Angie, I don't know if a low-carb diet is recommended, I guess that would be up to your doctor. I have a couple of friends whose cardiologist put them on the Atkins' Diet, which is a low-carb diet.
     I have been on the Atkins' Nutritional Approach since July of last year. I have lost 40 lbs, my cholestrol has dropped and my triglycerides dropped over 100 points. My blood pressure is in the normal range all the time now and although I am diabetic, my blood sugars are in total control. My last HBA1C test came out 5.4%!
     My doctor approves of my doing this program as a way of life. It is not just a diet for me. I am not interested in losing weight fast but I want to feel better, control my blood sugar and other things, and keep my heart failure in control at the same time. I think the weight loss will help in that area. You have to be careful of the sodium in low-carb eating. It takes a lot of work to adjust. It seems like most low-carb stuff is high in sodium so read your labels carefully.
     It is something you probably should talk to your doctor about, plus the Web has ton of information on low-carb programs. Good luck with whatever program you go with. Thanks, Jon, for the great low-carb soup recipe. I plan on trying that next week. It sounds yummy! Donna in Florida. gramme@cfl.rr.com


Jon, April 10, 2003 - Hi everyone, The ICDs page has been updated. Jon.


Loretta D's April 10 reply to Angie H's April 9, 2003 - Hi Angie, I have been on a low-carb diet (20 to 25 net carbs per day) since August of 2002 and have kept my average daily calories at 1500. As of today I have lost 77 pounds, with lots more to go. My primary care doctor and cardiologist both know I am on this diet and neither one has tried to discourage me. Good luck with whichever diet you choose. lorettad7@comcast.net


Loretta D, April 10, 2003 - Hi Everyone, I would just like to pass on a tip about software called LifeForm. I discovered it a few months ago from my low-carb newgroup. It is simple and easy to use. It tracks your health stats, medical information, medicine, nutrition (calories, carbs, etc.) and your recipes. You can download a free trial version online. I just wanted to say it really helps me. lorettad7@comcast.net


Tom P's April 10 reply to Barbara H's April 1, 2003 - Hi, It may be possible that rapid loss of water is also dropping the blood pressure. Also with extreme water loss, testing of potassium levels should be done. Good luck, Tom. create@ntplx.net


Tom P, April 10, 2003 - Hi, In April of 2002, surprise! I was hospitalized with CHF. My heart was enlarged and my EF was 10%. Six months later without taking Coreg but taking Digoxin, Lasix, and accupril, my left ventricle's diastolic size went from 7.2 to 5.6cm, systolic from 6.7 to 4.6cm, left atrium from 6.2 to 4.6cm, and my EF to 25%. I believe it was CoQ10 and Hawthorn Berry extract.
     I really need people's advice on starting Coreg. I feel I am being pressured to start it. Am I crazy to not want to take it? Can you ever successfully stop it once you have taken it for a year? Is it worth the tough starting? Will I really live longer and better quality by taking it? Do some wish they never took it? Do others think it waas a miracle drug for them? Sometimes I wonder if all the drugs are weakening me more than CHF. Please give me your comments. Thanks. create@ntplx.net


Lydia M, April 10, 2003 - Hi Jon, I have had such stiff and sore musles. Is this part of heart failure? Is it because of poor blood circulation? There are days that I move around a lot and the next day I also feel this muscle pain. I am not disciplined when it comes to exercise. Is this the problem? I would like to do what I can to help this problem. I would really appreciate your input. I have not posted in along time but I have read them regularly and I just want to say God bless to everyone there. Thank you, Lydia. Flanders66288@cs.com


Jon's April 10 reply to Lydia M's April 10, 2003 - Hi Lydia, You need to talk to your doctor, especially if you take a cholesterol-lowering drug. If it is not a drug side effect or interaction, you'll just have to learn discipline exercising because it is probably deconditioning. Jon.


Wayne, April 10, 2003 - Hi, If someone has an EF of 50% at rest, with a heart rate of 70 beats per minute, does the heart maintain that EF as the BPM increases with exercise? Is the answer to this question different for CHFers and folks with normal hearts? Thanks, and God bless. whreos@earthlink.net


Jacky's April 11 reply to Tom P's April 10, 2003 - Hi, I started Coreg last October at 3.25mg twice a day and have slowly increased it to 6.25mg twice a day, with no side effects at all. My doctor says the secret is to increase slowly. I have certainly felt the benefits, although my ejection fraction has not increased, which is a bit disappointing! Jackymwb@aol.com


Natalie K, April 11, 2003 - Hi Jon, I switched to a CHF specialist this month mainly because your site is so consistently insistent about it. In my case, your advice was exactly right. My new guy has me feeling very different in a very positive way. I was grateful for this site before; I am doubly grateful now. What an unbeatable team I now have on my side: The Man Upstairs, you, and my new CHF specialist (not necessarily in that order). Thank you, thank you, thank you! Life is good! mcnat45@yahoo.com


Pen, April 11, 2003 - Hi, I posted earlier. It seems like to me from reading all the other posts that Coreg's just a rough med to take. Jon, I can't wait to read your page. I don't know whether my doctor will want me to quit it gradually or not, but he has taken me down to 12.5mg twice a day when I was at 50mg twice a day. I am having trouble with my blood pressure dropping throughout the day. Sometimes I feel like I can't move because I absolutely have no energy. It seems like I do fine for awhile, then I start messing up again, having shortness of breath and no energy. I think he said my EKG has changed a little too. I think that has something to do with my LBBB. Any information or advice will be appreciated. God bless, Pen. pmp1658@hotmail.com


Tom W's April 11 reply to Tom P's April 10, 2003 - Hi, During one of the Coreg trials, CHFers taking the Coreg did so much better than those not on it that they stopped the trial and placed everyone on it. This is enough evidence for me to put up with the side effects/effects and stay on it. It's much the same with CoQ10. When autopsies are done on heart patients they have low CoQ10 levels: 'Nuff evidence for me to pay the outlandish prices and continue taking it even though I have not seen nor felt any of the claimed benefits. Just my not so humble opinion, Tom W. tew4515@yahoo.com


Eris D, April 11, 2003 - Hi, Amazing news! I had an echocardiogram which showed that my heart was normal size and my ejection fraction was normal. This was a great surprise because in 1996 it was 17%, then up to 32% in 1998.avark@mindspring.com


Ben B's April 12 reply to Eris D's April 11, 2003 - Great news! I hope new people will see and remember that it can happen! I'm sorry it doesn't happen for everyone, but for some people it does. Mine went from 15% to 45% and I feel pretty good. bdbrinkman@juno.com


Pat H, April 12, 2003 - Hi, I am suddenly hearing about CoQ10. Do many CHF patients take this? What brand? What do doctors think? My appointment is next week and I was planning to discuss it with my doctor. I am trying to be proactive in my treatment. Thanks again for this great site, Pat. pat_hammond@mindspring.com


Valerie R's April 12 reply to Eris' April 11, 2003 - Hi Eris, I think that is wonderful news! I wish I knew your secret and those of some of the others. Mind you, I am not really complaining. I am grateful that I have been, except for 2 recent setbacks, fantastically well-compensated and able to teach school. However, so many of you have gone back to normal or almost normal! I was basically told by my first group of cardiologists that if I did not get better in my first 6 months, I would probably not get better at all. I know they meant the numbers, because that is all they went by, not the person. Anyway Eris, congratulations! Valerie. vgrogers@aol.com


Vicki, April 12, 2003 - Hi, I would like your opinion on a matter. I was diagnosed with cardiomyopathy about 2 years ago. I have been on digoxin, 5mg zestril, and 25mg Coreg twice a day. A few weeks ago my blood pressure started dropping and I have felt weak and woozy off and on since that time. I wore a Holter monitor and my doc took me off digoxin to improve conduction at night (whatever that means) and reduced my zestril to 2.5mg per day.
     About an hour after I take my dose of Coreg in the morning my blood pressure drops to like 82/55 and I feel awful. As the day goes on, I slowly start feeling okay. Is the dose of Zestril now too low to affect my condition in a positive way? Which drug should be reduced in your opinion: Coreg or Zestril? Many thanks for any input. If I'm going to be miserable with low blood pressure, I would prefer to be on the best combination for my condition. Snevetsii@aol.com
 
Jon's note: Most doctors would disagree with me but if it were me, I would raise the ACE inhibitor and reduce the Coreg, or switch from Coreg to Toprol-XL


Angie H, April 14, 2003 - Hi, My hubby had to get a Viagra prescription. No instructions came with it so we looked it up on the Internet. The possible side effects are enough to scare us both! Has anyone here tried it? I am serious - I need another opinion. I know side effects vary from person to person but the cardiac side effects listed are scary! Advice, anyone? Angie. angieh@core.com


Tom S, April 14, 2003 - Hi, About 5 years after I was struck down with a severe case of idiopathic cardiomyopathy. My then 61-year-old mother-in-law was also hit with the same affliction. She was basically a very sedentary, chain smoking, coffee drinking couch potato and did not change her behavior too much after the initial intensive visit to Club Med.
     Since her initial hospitalization, she has been back at least 3 times I know of and the last was after suffering a mild stroke. On Tuesday after her adult child that lives 2 hours from her did not hear from her and could not reach her by phone, she finally managed to get a family friend that lives closer to go check up on her. Needless to say, it was not good.
     My mother-in-law was found on the kitchen floor absolutely paralyzed from a massive stroke, and in really bad shape. They estimated she had been lying there since the previous Friday in the cold without heat. After brain scans and other tests it was determined she would never recover and was taken off life support Saturday. As of this writing she is lingering, but all major organs have shut down and there is no hope for survival; if there was, it would be in a vegetative state.
     So we sit and wait, not knowing when but definitely knowing how and why. It would have been nice if grandma had thought more of herself and followed doctors' orders. Please remember her in your prayers. bigheart@hotmail.com


Tom P's April 14 reply to Pat's April 12, 2003 - Hi Pat, There is a lot of info about it on the Internet. Here is a link that will bring you to a great site and a heart doctor that I believe is knowledgeable of supplements. See http://www.drsinatra.com (Jon's note: This site requires giving personal information to register). Most doctor's knowledge comes to them from drug company funded studies.
     CoQ10 is an enzyme that is naturally in the body. It is interesting that there is a correlation that folks with heart problems are low in CoQ10. I have taken it for about a year, along with most of the other supplements he recommends. I stopped for a few months and began showing signs of shortness of breath and getting waterlogged. In my case, the supplements have been as important as the meds. In the first 6 months after I was hospitalized about a year ago, I had "remarkable" (my doc's words) improvements in my heart dimensions and EF from 9% to 25%; without Coreg.
     Do your own research, but for me CoQ10 is a miracle. Hawthorn berry extract is also really good. It is used extensively in Europe. L-Carnitine is also good. Many of these help the heart cells utilize oxygen better and have more energy.
     Good luck! Buy good quality supplements. For CoQ10, you want it highly absorbable. Some have a special shell and some folks take it with a tiny bit of peanut butter, something about that helps it be absorbed better. I joined "Life Extension" at http://www.lef.org/. It costs $75 but then you get top quality stuff. Again, do your own research. Good luck, Tom. create@ntplx.net


Dan R, April 14, 2003 - Hi, I have CHF and cardiomyopathy. I'm now going to the hospital as an outpatient 3 times a week to get a treatment called Natrecor and IV Lasix to get rid of some fluid. I have been going for a little over 2 months and have not seen any improvement in my fatigue or SOB. Can anyone tell me if they have been through this treatment and found or not found improvement? I am class 3 with an EF of 25%. Thank you for any help. Dan. dryan6659@aol.com


Brandy, April 14, 2003 - Hi, I feel this tight feeling in my throat. It lasts as long as a heart beat, and is pretty regular over the past couple of weeks. I can't differentiate it between a PVC/heart beat or a snotty mucosy feeling in the bottom of my throat. It almost feels like a cross between someone is pinching my throat at the bottom and the need to clear my throat, and is worse when I lie down. I just had a holter monitor, and none of this happened while I was on it. It also feels like it happens most on exhalation rather than inhalation, and mostly from 3: PM and after. Weird. I feel fine otherwise now, though. Any ideas? Brandy. brandy@ppcmsupport.net
 
Jon's note: If you take an ACE inhibitor, please talk to your doctor soon. This could be a manifestation of angioedema, a potentially dangerous side effect


Eris D, April 14, 2003 - Hi, As I told you, my cariologist and I were amazed to find my heart had gone back to normal size and that my EF was above 50%. Some of you have written to say you have had similar experiences or that you know of others who have. Do you (they) continue to take all the meds you were taking? My cardiologist has already said I should stop taking Coumadin, but did not mention (on the phone) any others. I am taking Losartan, Coreg, Digoxin, Coumadin, spironolactone, and furosemide. avark@mindspring.com
 
Jon's note: Losartan and Coreg should be continued, with digoxin optional. I don't know why you were on Coumadin so I can't say about that


Jon, April 14, 2003 - Hi everyone, The new page about my experiences of late with exercise, stopping Coreg and with the Atkins' Diet is done - at least the first draft is up. It can be viewed at www.jonsplace.org/rel/trip.htm. Jon.


Jon, April 15, 2003 - Hi everyone, I apologize for the site's disappearance. A hacking attack brought down e-mail and a hardware disaster destroyed the rest, including server back-ups. I think I have most of both sites restored from my own backups and will respider the site for search engine functionality later today. I will have forms working in a few hours. It's a much larger site than most people realize and it takes a long time to restore from scratch.
     However, for several reasons, I will be offline for at least a few days (maybe a week) beginning sometime this week. I must retool my own computer due to the failure of Windows 2000 Pro plans, take care of my dawg Miss Molly who had surgery yesterday, and to take care of some other things that have waited too long already.
     The sites will still be available (I hope!) but me and the message boards won't be for some days. I'll probably start tonight. It would be a good time to read other pages for those who usually only use the message boards. Jon.


Angie H, April 15, 2003 - Hi, Well, we tried Viagra. My husband says it feels different but all over the experience was great. Anyway, hubby was really worn down afterward so use will be infrequent but he did not have any chest pains or other side effects that we could tell. Angie. angieh@core.com


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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