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

Lawton 4-16     seek CHF specialist in Florida
 
Rick M's 4-16 reply to Tom S' 4-15     you're risky business
 
Lou's 4-16 reply to Jeremy's 4-15     Atkins' diet
 
Rick 4-16     coworker problems - anyone else?
 
Joseph P 4-16     where is the Medspeak page?
 
Jon's 4-16 reply to Joseph P's 4-16     finding pages
 
Tina Mount's 4-16 reply to Joseph P's 4-15     Colace for constipation
 
Scott Brown's 4-17 reply to Tammy B's 4-15     EF, echos, Lasix
 
Scott Brown 4-17     update on my dad, always hope, prayer request
 
Betty 4-17     update
 
Allen V 4-17     heart rate, blood pressure questions
 
Jon's 4-17 reply to Allen V's 4-17     heart rate, blood pressure, and Coreg
 
John K 4-17     PVCs and chest pressure questions
 
Julie 4-17     feelings and questions about being misdiagnosed
 
Jon's 4-17 reply to Julie's 4-17     being misdiagnosed
 
Tina Mount 4-17     weight gain questions
 
Jon's 4-17 reply to Tina Mount's 4-17     weight gain, doctors and more
 
Derald G 4-17     are there any long-term CHF survivors?
 
Tom S' 4-17 reply to Rick M's 4-16     stay on my good side
 
Lori K's 4-18 reply to Joseph P's 4-15     Colace has high sodium
 
Lisa's 4-18 reply to Julie's 4-17     dealing with misdiagnosis
 
Tracie Sagara 4-18     seek stopping digoxin experiences
 
Jon's 4-18 reply to Tracie Sagara's 4-18     I hope others also reply
 
Joseph P 4-18     got my Disability
 
Jim L's 4-18 reply to Lou's 4-16     Atkins' diet
 
Katherine H 4-18     Coreg and blood pressure/heart rate experience
 
Jon's 4-18 reply to Katherine H's 4-18     Coreg and blood pressure/heart rate
 
Gary James 4-18     I am eating a lot of salty stuff
 
Amelia's 4-18 reply to Tina Mount's 4-13     hole in heart experience & more
 
Anita C's 4-19 reply to Derald G's 4-17     living with heart failure
 
Tom S' 4-19 reply to Derald G's 4-17     living with heart failure
 
Lori K's 4-19 reply to Derald G's 4-17     living with heart failure
 
Jack D's 4-19 reply to Gary James' 4-18     grow up
 
Tracie S' 4-19 reply to Jon's 4-18     stopping digoxin questions
 
Jon's 4-19 reply to Tracie S' 4-19     my stopping digoxin experience
 
Herbert L's 4-19 reply to Gary James' 4-18     hmmmmmmm
 
Jon's 4-19 reply to Gary James' 4-18     get with the program
 
Paul's 4-20 reply to Gary James' 4-18     seek real-life experiences
 
Jon's 4-20 reply to Paul's 4-20     real-life experience
 
Richard M's 4-20 reply to Gary James' 4-18     you can change eating habits
 
Julie S 4-20     coping with it all & more
 
Tony T's 4-20 reply to Tracie S' 4-19     stopping digoxin experience
 
Sherry 4-20     getting a bad feeling - please help
 
Karen F's 4-20 reply to Derald G's 4-17     living with heart failure over time
 
Lou's 4-20 reply to Gary James' 4-18     making life style adjustments
 
Lori K's 4-20 reply to Julie's 4-17     doctors , misdiagnoses & more
 
Derald G 4-20     finally saw a CHF doc and more
 
Ben B's 4-20 reply to Derald G's 4-17     be careful when feeling bad
 
Fred D's 4-20 reply to Gary James' 4-18     coping with cravings & more
 
Shelby H 4-20     dehydration & ICD questions
 
Jon's 4-20 reply to Shelby H's 4-20     dehydration and ICD info
 
Noel Palmer 4-21     VA versus private care questions
 
Derald G's 4-21 reply to Gary James' 4-18     life style changes
 
Dan's 4-21 reply to Derald G's 4-17     I never changed life style
 
Jon's 4-21 reply to Dan's 4-21     count your blessings & more
 
Ralph H 4-21     Coreg cautions & more
 
Jon's 4-12 reply to Ralph H's 4-21     Coreg cautions
 
Herbert L's 4-21 reply to Gary James' 4-18     stress control also counts
 
Tom S' 4-22 reply to Noel Palmer 4-21     VA medical care experience
 
Joseph P 4-22     dry mouth and dental care
 
Phil S' 4-22 reply to Noel Palmer 4-21     VA medical care experience
 
Jeremy 4-22     dos it help to take multiple drugs? & more questions
 
Richard's 4-22 reply to Noel Palmer 4-21     VA medical care comments
 
Tammy B's 4-22 reply to Scott Brown's 4-17     fluid intake restriction, mouth sores
 
Jon's 4-22 reply to Tammy B's 4-22     dehydration, proper treatment options
 
Joe R's 4-22 reply to Gary James' 4-18     he can't be serious,. update
 
Jon's 4-22 reply to Joe R's 4-22     regarding responses to Gary James
 
Tracie S' 4-22 reply to Tony T's 4-20     digoxin, update
 
Jon's 4-22 reply to Tracie S' 4-22     digoxin, update
 
Marty's 4-22 reply to Jon's 4-21     thanks for Coreg and arrhythmia info
 
Jen 4-22     does anyone have PPCM?
 
Keith 4-22     need tips on not drinking too much fluids?
 
Gary James 4-22     can't I get some help here?
 
Susie O's 4-22 reply to Noel Palmer's 4-21     VA medical care experience
 
Derald G 4-22     starting Coreg & heart rate question
 
Jacky 4-22     seek Diovan cough experiences
 
Stephanie's 4-22 reply to Gary James' 4-22     I think you care
 
Mel G's 4-22 reply to Jon's 4-22     coping with cravings & more
 
Jon's 4-22 reply to Mel G's 4-22     please re-read my post
 
Joe W's 4-22 reply to Noel Palmer's 4-21     VA medical care experience
 
Tom S' 4-22 reply to Keith's 4-22     coping with dry mouth
 
Dan's 4-22 reply to Jon's 4-21     thanks for ICD info & more
 
Dawn B's 4-23 reply to Keith's 4-22     dry mouth tips
 
Mike 4-23     nice to know I'm not alone & more
 
Craig A 4-23     what do you think of fish & fish oil?
 
Noel P 4-23     is pain normal for CHF? What to do?
 
Steve H's 4-23 reply to Tom S' 4-22     dry mouth tips
 
Tina Mount's 4-23 reply to Keith's 4-22     dry mouth tips
 
Joseph P's 4-23 reply to Mel G's 4-22     watching sodium intake must be routine
 
Tina Mount 4-23     seek low sodium spaghetti sauce & more
 
Jack D's 4-24 reply to Tina Mount's 4-23     low sodium spaghetti sauce recipes
 
Lou's 4-24 reply to Tina Mount's 4-23     low sodium spaghetti sauce recipes
 
Walter K's 4-24 reply to Keith's 4-22     med for dry mouth
 
Karen F's 4-24 reply to Tina Mount's 4-23     tracking sodium in foods
 
Jacquie 4-24     low sodium foods
 
Derald G's 4-24 reply to Joseph P's 4-23     low sodium snacks
 
Lou's 4-24 reply to Craig A's 4-23     fish benefits
 
Derald G's 4-24 reply to Noel P's 4-23     smoking pot for pain & CHF
 
Jon's 4-24 reply to Noel P's 4-23     pain & CHF
 
Gene's 4-25 reply to Tina Mount's 4-23     low sodium spaghetti sauce
 
Joseph P 4-25     staggering pill taking
 
Jon 4-25     posts
 
Jon 4-26     technical difficulties
 
Jon 4-30     technical difficulties
 
Joe's 4-30 reply to Noel P's 4-23     pain possibilities
 
Ralph H 4-30     Coreg, digoxin & PVCs
 
Jon's 4-30 reply to Ralph H's 4-30     Coreg, digoxin & PVCs
 
Tracie S' 4-30 reply to Jon's 4-22     digoxin info, doctors & more
 
Jon's 4-30 reply to Tracie S' 4-30     how things are said & more
 
Derald G 4-30     Coreg is quickly helping me
 
Joyce's 4-30 reply to Jon's 4-24     what about that foot pain?
 
Jon's 4-30 reply to Joyce's 4-30     about foot pain & CHF
 
Tina Mount 4-30     low sodium cooking & thanks
 
Larry's 4-30 reply to Noel P's 4-23     pot smoking, pain, and doctors
 
Jacky B 4-30     Diovan & low BP question
 
Craig A 4-30     has anyone used Uprima?
 
Pauline 4-30     Lotrel, Cardizem, Inderal, doctor questions
 
Chuck A's 4-30 reply to Joseph P's 4-25     drug interactions
 
Tina Mount 4-30     seek CHF doc in Ohio
 
Jon's 4-30 reply to Pauline's 4-30     just an opinion
 
Tom R 4-30     EECP trial
 
Derald G's 4-30 reply to Jon's 4-30     foot pain theory - sort of
 
Mike H's 4-30 reply to Joyce's 4-30     back pain questions
 


Lawton, April 16, 2002 - Hi, I'd like information from anyone that is seeing a CHF specialist who may live in my area. I live in Crestview, Florida, 32539. I do have a heart problem. I have been told by my doctors that I have dilated cardiomyopathy. Thanks. l-rhoden@cox.net


Rick M's April 16 reply to Tom S' April 15, 2002 - Hey, If all the people who do nice things for you die suddenly, remind me to cross the street whenever I see you approach. <g> rearadml@iu.net


Lou's April 16 reply to Jeremy's April 15, 2002 - Hi, My advice is stay away from it. First up, the weight loss is only temporary. As soon as you begin to eat carbs again, it'll start packing back on. Also, because your body is being deprived of things it needs, you can cause ketosis, which can lead to kidney failure. Being on the Atkins' diet is almost like not eating at all, even though you feel full. I don't know of a single doctor that would recommend this diet to anyone, much less someone with heart issues. The only way to permanently lose weight is to cut your caloric intake. Exercise is also key, but I understand if you're limited. Talking to your doctor would be the best thing to do in this case. stormhawk@monstermenagerie.com
 
Jon's note: I do not endorse this diet and I would not go on it myself, but I thought ketosis was the point of this type diet


Rick, April 16, 2002 - Hi, After being off work for ten months with my CHF, I went back to work at my laborer job. My employer is taking good care of me and has given me a desk job; I have worked for them for 25 years. My problem seems to be with my co-workers. They seem to have a big problem with me doing less than they do, even though some of them started just a few months ago. They know I have a heart problem but seem to think "If he can't do everything, they should get rid of him!" Has anyone else here ran into this problem? rnbjaxs@aol.com


Joseph P, April 16, 2002 - Hi Jon, Where have you moved your abbreviations for like a-fib. A lot of us have a memory that seems to fail at times. Thanks, Joseph P. God bless. joeandol@shawneelink.net


Jon's April 16 reply to Joseph P's April 16, 2002 - Hi Joseph. You can find everything that is available through the site index, which is at www.chfpatients.com. The Medspeak glossary is at www.chfpatients.com/glossary.htm. :-) Jon.


Tina Mount's April 16 reply to Joseph P's April 15, 2002 - Hi Joseph, I am currently, and have been for the last two months, taking Colace for constipation that they think was caused from my gallbladder surgery. At first they weren't working correctly, so my doctor advised me to take them twice a day and drink a whole glass of water each time. He also said to try apple juice. These seem to be working for me, I am now on one pill a day because my bowels became too active. I hope this helps, Tina. mickjordmoll@hotmail.com


Scott Brown's April 17 reply to Tammy B's April 15, 2002 - Hi Tammy, You might want to check some old posts from Jon about how ejection fraction can be high, but you are still decompensating. Essentially, you need to keep in mind that a normal heart with an EF of 50% could pump the same blood volume as an LV that is twice as large but has an EF of 25%. The enlarged heart is not efficient and not sustainable (unless you are a rare super-athlete).
     Regarding an echocardiogram, I'm sure you realize this method of measuring EF is not exact. It is good for what it is: very noninvasive and it gets you in the ball park. Something like MUGA would give you a more exact reading.
     If your Lasix is not working well, your kidneys could be having problems. Do you get your electrolytes checked regularly with blood tests? Lasix can cause problems with chronic use. If you can cut way back on fluid intake, you may be able to avoid Lasix and give your kidneys a break. Of course, weigh yourself every day to make sure your weight is not getting out of control. Best of luck to you, Scott Brown. kitchenerguy@yhotmail.com


Scott Brown, April 17, 2002 - Hello All, I wanted to update all of my contacts on my dad. I was diagnosed with familial cardiomyopathy in August, 2001, with an LV EF of 20%. I drove my dad to Toronto General Hospital on Sunday night, where he received a heart transplant early Monday morning. He is making good progress so we are cautiously optimistic. Does anyone know if there are any support boards for heart transplant recipients? I'm sure they have their own set of challenges and support needs.
     It would be great if anyone can pass anything. Everyone on this board needs to know there is always hope when you have CHF. Two years ago, my father's cardiologist said there was nothing else they could do for him aside from meds. Cardioversion stopped working over 5 years ago. While in the hospital, we met a truly exceptional cardiologist who filled my dad with new hope, the kind of doctor that makes you feel better just by his confident words. He said that my dad did have options, so we went through better meds, diet changes (the old cardiologist did not even limit sodium), pacemaker/defib and we were looking at an LVAD. Three months ago my dad went on the transplant list since it was clear he was close to end-stage, with not enough blood flow to the brain causing confusion.
     That brings us to the transplant. After 2 hours of surgery, he has a new heart. I know his whole story gives me hope for the future. Please say a prayer for him that he will make it out of the hospital with no complications. Thanks, Scott B. kitchenerguy@hotmail.com


Betty, April 17, 2002 - Hi, This is my second time to write. I was diagnosed with dilated cardiomyopathy 3 years ago, with an EF of 19%. I'm the one who wrote about having a low body temperature, and problem with my thyroid. I haven't found an answer yet but I'm still looking! By the way, I printed The Manual here on CHFpatients.com when I was first diagnosed and that was a big help! My EF was not much better on my last test, but I get it checked again in July, and I think it has gone up some this time. Betty. dtetik@fullnet.net


Allen V, April 17, 2002 - Hi, This is my first post but I have been reading the message board ever since I was diagnosed with DCM in November of 2001.
     My question is about Coreg and Altace. I've been taking both for around two months now. At first while taking 10mg Altace and 3.125mg Coreg twice a day, I noticed my blood pressure and pulse were slowing down considerably (111/70 from 160/110 and 64 from 115). Now that my Coreg dose has been gradually increased to 12.5mg twice a day, my BP has dropped to 85/50 and my pulse has increased to 80. Is the pulse supposed to be at that level? I would have thought it would go lower or at least stay at the 50 to 70 range. If anyone has any information please let me know. Thank you and God bless you all, Allen Vicencio. allenvicencio@hotmail.com


Jon's April 17 reply to Allen V's April 17, 2002 - Hi Allen, I am not a doctor and this is going to be very simplistic but here's some thoughts on your questions. Coreg competes for a type of cell receptor in your body. The usual "natural" substance that hooks up to those receptors is a hormone that increases your BP and heart rate when it makes that hook-up. All of a sudden, it has to fight to find a receptor because the Coreg is also trying to hook up with the same receptors. So you see a drastic drop at first in BP and heart rate, and your symptoms often get worse due to the sudden change.
     However, several things can happen to change your situation. Number one is that your heart function can improve, which increases your blood pressure because your pump is pumping better.
     Also, your body always tries to get its own way. Just as the body finds ways to increase angiotensin II despite chronic ACE inhibitor use, your body adjusts to some degree to the changes forced on it by Coreg. This is not fully understood, mainly because there are no true long-term studies on Coreg for heart failure. My own heart rate dropped drastically, then went back up with Coreg use. It now stands at about 90 to 95.
     I have seen in my own CHF doc's office charts representing his CHF patients on Coreg over time. There is a significant subset whose BP and heart rate go up slowly but surely over time, despite Coreg dose being increased. This is simply not yet understood. I hope others also reply. I always miss some important angles. Jon.


John K, April 17, 2002 - Greetings all, I have CM, the extent of which I do not know. My doctors say I appear to be in good health and my EF went up to 65% from 40 to 50% but I still have symptoms; mostly those annoying PVCs that seem to appear when I exert myself, or do something like walk up a long flight of stairs. Also, I have that squeezing pressure on my chest. Does anyone else with cardiomyopathy have PVCs and to what extent? Nightlaw@earthlink.com


Julie, April 17, 2002 - Hi all, I was diagnosed with DCM and CHF in March of this year. I went to my doctor about 4 years ago with complaints of palpitations and edema in my ankles. I am a nurse and had hooked myself up to the monitor at work and noticed that I had a bundle branch block. I printed out a rhythm strip and also showed that to my doctor. He told me that us nurses need to quit hooking ourselves up to the monitor and that a lot of people have BBB and it is nothing to worry about.
     In the meantime I became pregnant and my edema was blamed on the pregnancy. One and a half years after giving birth I still had the edema and increasing shortness of breath. I went to a new doctor and told her of my edema and mentioned that I still had a BBB. She did an EKG in the office and told me that I have a LBBB and ordered an echocardiogram. That is how I was diagnosed with cardiomyopathy.
     I wonder if my DCM would have been diagnosed 4 years if I would still be in CHF. I wonder if meds would have been started 4 years ago if I would be better off now? Does anyone have any opinions or suggestions on this? My EF is 30%. If it would have been diagnosed 4 years ago would I have had a better chance at having a higher EF? Please give me your opinions or wisdom on this subject. wrinklybuttwiper@aol.com


Jon's April 17 reply to Julie's April 17, 2002 - Hi Julie, I don't know. No one knows. I would guess that up to 30% of all CHFers were misdiagnosed at least once. It's so common that it is one of the topics on the new Archives search page. That page was just started and I have a lot more posts noted to place there in the next week or two. Please let me know if this site feature is helpful or not to you.
     I was misdiagnosed multiple times and almost killed - literally - by poor doctoring and unnecessary surgery during undiagnosed acute CHF. Two doctors made huge blunders that almost cost me my life. However, those blunders can't be undone. I forgave my doctor and moved on. Really, it's the only way to get on with life. It never crosses my mind now except when others wonder what might have been.
     Yours is certainly a valid post and many people have these thoughts. Just remember that the only ongoing thing acomplished by these thoughts is to give the past power over you. If this bothers you: angers you, frustrates you, leaves you despondent or uncertain, takes up mental and emotional space that might be better used; then the past is exercising real, actual power over your life today. I recommend forgiving and moving on - even though it may not be easy.
     I am sure others have many thoughts on the subject and I look forward to hearing what others think. Jon.


Tina Mount, April 17, 2002 - Hi, I have a question about weight gain. My doctor said to weigh myself daily to track the water weight. On Sunday, I was 161 pounds and this morning I weighed 164.5. Is this something I need to call him about? I'm also a little short of breath but am not sure if it's real SOB or phantom SOB because I am worried about the weight gain.
     I am asking you guys because I don't want to call the doctor over every little thing and have it be nothing. I did that while I was pregnant and afterwards felt as if I was bugging them. I am really concerned about this because I was just in CHF for the first time 2 weeks ago and was hospitalized. Like I've said before, this is all new to me and I am very scared. Thanks, Tina. mickjordmoll@hotmail.com


Jon's April 17 reply to Tina Mount's April 17, 2002 - Hi Tina, This is a normal concern. A couple of points here. Number one is that you should talk this over with your doctor, and agree that if you gain x.x pounds of weight over a 24 to 36 hour period, you'll just go ahead and take an extra diuretic and watch your sodium intake more closely. That is standard procedure.
     A common agreement is that if you gain 2 to 3 pounds over 24 to 36 hours, you are retaining fluid. This may change during your menstrual period as was recently discusssed here. Like the edema page says, you must stay on top of this. If you don't, your stomach lining may accumulate fluid and then your diuretic pills won't work very well. So like The Manual says, make an agreement with your doc that you will take an extra diuretic pill if you gain weight quickly.
     Your doctor gets paid a lot of money to answer your questions <g> so don't feel bad about asking as many as you want. Call them whenever you have a question; and expect a prompt answer to each and every one. I am not getting on you about this. However, it's very important that you develop a relationship with your doctor - your CHF doctor especially - that is comfortable and allows you to freely ask whatever is on your mind. Don't be put off by staff either - it's your doctor that counts and if he is comfortable with your questions, they can just be polite about it. They get paid to do this too, you know - it's not something they do out of the kindness of their hearts - it's their job. ;-) Jon.

Derald G, April 17, 2002 - Hi folks, I'm just curious. Has anyone survived CHF for over 10 years? deraldg@earthlink.net


Tom S' April 17 reply to Rick M's April 16, 2002 - Hi Rick, Ah, but you should have seen what happened to my enemies. I don't even want to mention that. <g> bhigheart@hotmail.com


Lori K's April 18 reply to Joseph P's April 15, 2002 - Hi Joseph, I have had experience with Colace. Be careful with it in heart failure because it is docusate sodium. A pharmacist could tell you how much sodium is in it. A better choice might be Surfak, which is docusate calcium, plus you only need one pill and I think it is more effective. It is over the counter. The few times I needed something, Colace never worked for me for several days and it is was too much sodium with taking so many pills. Good luck, Lori. thegoof86d@aol.com


Lisa's April 18 reply to Julie's April 17, 2002 - Hi Julie, I was misdiagnosed 3 years ago with a faulty heart rhythm which left me a year ago in second stage heart failure with edema. I was actually in heart failure for 4 months and being treated for anxiety and pumped full of Valium! Eventually I got admitted - after 3 visits to a General Practitioner because I knew I wasn't right - and was thus diagnosed with DCM. I was treated for viral DCM, despite a persistent tachycardia.
     However 6 months later they finally admitted that tachycardia was causing my DCM and performed an ablation, which is now having the effect of improving my heart function and my EF, which was 20% at diagnosis is now rising well. I have gone over so many times the damange that my heart has suffered by misdiagnosis, and now cannot believe that I could ever sustain recovery. Even if my heart reaches a normal EF I don't think anyone can say it's going to last the normal course of a lifetime and I am only 36!
     But as Jon says, there's sod all you can do about it now, and so now I just thank God that it was diagnosed when it was, because with any DCM, sudden death is always a risk but once diagnosed and treated that risk diminishes greatly. lisa661@yahoo.com


Tracie Sagara, April 18, 2002 - Hello everyone, My doctor has just given me the okay to lower my digoxin level from 0.25 to 0.125mg. I am into my third day on the lower dose and I am extremely light-headed and dizzy. My ankles and feet are a little swollen and I am having a tough time really carrying on an intelligent conversation. Has anyone ever had their digoxin levels lowered? If so, did they experience any of the same side effects? The nurse told me that it may take awhile for my levels to adjust, but I have an 8 month old daughter that I need to care for, and this is getting ridiculous. Please, if anyone knows anything about these side effects, please reply. I would like to stop taking digoxin altogether and I would love to know what I am setting myself up for. Thank you, Tracie Sagara. traciesagara@hotmail.com


Jon's April 18 reply to Tracie Sagara's April 18, 2002 - Hi Tracie, I am not a doctor and I don't even know that your symptoms are due to lowering digoxin dose. With that said, digoxin is an inotrope, which means it increases the heart's pumping strength. Is there a specific reason you want to stop taking it? A side effect or financial concern or something? I stopped digoxin altogether due to a side effect but had no difficulty. However, that is not always the case. Jon.


Joseph P, April 18, 2002 - Hi, I received a call today about my SSD. They approved me. I am going to start receiving payments when they decide to start sending them, Joseph P. jondol@shawneelink.net


Jim L's April 18 reply to Lou's April 16, 2002 - Hi, Of course you will gain back the weight by resuming your old carbo diet. Not only does his approach seem sensible but the recommendations stated worked for me. You will lose weight but then you are expected to control your input of carbos to maintain your desired weight. Atkins does reply to AMA criticisms of his works. clocker131@charter.net


Katherine H, April 18, 2002 - Hi Jon, Thanks so much for explaining to me why I am having so much trouble (your 4-17reply to Allen V). My CHF specialist asked me to try to hang in there for a few more weeks as I am havng the hardest time adjusting to my new dosage of 6.25mg Coreg twice a day. My blood pressure and pulse have varied from 150/75 to 89/61, with pulses ranging from 93 to 54 and that was within 2 hours.
     Last night however, I had something happen which has me concerned. The dog woke me to be let out and while he was out I realized just how dizzy I was, so took my blood pressure. It was 68/43 with a pulse of 66. Fifteen minutes later it had gone up to 91/66 with a pulse of 60. Is that anything to be concerned about or is blood pressure often very low within minutes of waking up from a sound sleep? kholian@metropo.mccneb.edu


Jon's April 18 reply to Katherine H's April 18, 2002 - Hi Katherine, There's an article that may help on the text files page called "Sleep-wake rhythms - chronotherapy." It is one of hundreds of very informative articles in the zip files at the bottom of the text files page but I pulled it out separately for this post's purposes. I think (it's been a long time since I mailed out most of these articles) it deals with blood pressure and bodily cycles.
     I would consider talking to your doctor about this. You may need to take Coreg 3 times a day in smaller doses, or just change your time of taking it. Also, always take Coreg with food! Jon.


Gary James, April 18, 2002 - Hi, I have just eaten an "Hawaiian" pizza. Today when I did the shopping I bought BBQ Shapes (Salty Savoury Biscuits) and a large packet of cheese and onion crisps. I have consumed the lot. I have CHF and had an 18% EF, which is now 30%. I can't help myself. What will this do to me? I have a real problem, I used to (before CHF) love chocolate but now it's savoury stuff. Can anyone help? qldsno1dj@hotmail.com


Amelia's April 18 reply to Tina Mount's April 13, 2002 - Hi Tina, Did your doctor tell you where the hole in your heart is located? I have ASD (interatrial septal aneurysm with a shunt). This hole was discovered only after they did a transesophageal echocardiogram (TEE). I was put on Coumadin because of arrhythmia and TIA. Good luck and I hope you get all your concerns answered. I think understanding and knowing exactly what is wrong with one's heart or other problems of health, you can cope and deal with the ups and downs better. It's the fear of the unknown that is fear itself. Jon, I sure hope you are feeling better. God bless. amelias@erols.com


Anita C's April 19 reply to Derald Gt's April 17, 2002 - Hi Derald, I survived and functioned pretty well with CHF for a little over 9 years, with an EF of 20%. In 1999, my EF fell to 15 and I was put on the transplant list and received my new heart in April of 2000. Anita C. abcox@triad.rr.com


Tom S' April 19 reply to Derald Gt's April 17, 2002 - Hi, Ask me again in 3 years and 6 months and I'll be able to tell you, if I am still around to answer it. bhigheart@hotmail.com


Lori K's April 19 reply to Derald G's April 17, 2002 - Hi, There are people who survive past 10 years. I know a man who just got transplanted after 15 years of battling CHF following heart damage from a heart attack. My own father-in-law survived around 10 years with it as well. I have seen posts on this site from people with CHF longer than 10 years. Many who are young are transplanted after that time and you may not hear from them as much. Also, my cardiologist has 5 patients with cardiomyopathy. All are living and stable after 10 years. I am sure my CHF doc has many more. So much depends on adherence to a low sodium diet, optimal medication doses, and yes, exercise recommended by your doctor. Attitude is huge, and a good CHF doc helps. I take it day by day and enjoy all the good ones! thegoof86d@aol.com


Jack D's April 19 reply to Gary James' April 17, 2002 - Hey, Can anybody help? Absolutely not! Maybe if you had a guard stand over you and slap you every time you decided to do something stupid. "I can't help myself"? Horse puckey! You remind me of an old blues song: "You live on the street without any shoes, you choose to lose, and that don't give you the right to sing blues." Grow up. How old are you? maddjak@hotmail.com


Tracie S' April 19 reply to Jon's April 18, 2002 - Hi Jon, Thank you for your experience. I want to stop digoxin due to the side effects. Were you able to stop cold turkey? I am still pretty dizzy today, and I am hoping that it doesn't last very much longer. What dosage were you taking? Did they have to lower it before you stopped? Did you have any side effects after you stopped? Did the doctor put you on any other medication instead of the digoxin? Sorry for so many questions. I would appreciate any input. Thank you, Tracie. traciesagara@hotmail.com


Jon's April 19 reply to Tracie S' April 19, 2002 - Hi Tracie, Questions are why we're here. ;-) I was taking 0.125mg daily and stopped all at once per my doctor without any side effects at all. It took 6 months for the "breast" pain that made me stop taking it to go away though. We were never sure if it was Aldactone or digoxin causing it but it got bad enough to stop both drugs to be sure it went away as quickly as possible.
     Everyone reacts differently. Digoxin reduces symptoms in a lot of people even though it does not reduce mortality in CHFers. The tricky thing about digoxin is that you can get along fine with it for years and then start having side effects. Jon.


Herbert L's April 19 reply to Gary James' April 18, 2002 - Hey, Sell your guns; if you have a family that cares about you, leave a suicide note and disappear; move to Oregon; establish two doctors because much sooner than later they will tell you that you now have six months left and they can now help you with your desire! It's faster than hitting the Delete key. If you really have CHF, I'll be surprised. the-honey-do@charter.net


Jon's April 19 reply to Gary James' April 18, 2002 - Hey Gary, If you really have heart failure, then you know this is your life you're talking about. If it isn't important enough to you to prolong it, then just keep doing what you say you're doing. If you want to live awhile, get with the program. We are real people dealing with a life threatening illness. Are you? If so, get serious about it. No one can help a person who doesn't want to be helped. Jon.


Paul's April 20 reply to Gary James' April 18, 2002 - Hi, I am 39 years old and tend to be in the same boat as you, Gary. I was diagnosed with dilated cardiomyopathy in January of this year. Let me give you a brief background history first. in late December of 2000 I went to the ER for blurred/double vision and the inability to control where my eyesight was directed. The ER doctor diagnosed me as having vertigo, which was gone the next day. While at the ER, they hooked me up to an EKG which indicated a LBBB. I was sent for a follow up appointment with a cardiologist.
     They did a stress test on me using medication to stimulate my heart to think I was on a treadmill. The test result led the doctor to believe I might have some blockage of the arteries so I went in for a heart cath and possible angioplasty. That test indicated that my heart arteries were perfectly clear. According to the doctor I had dilated cardiomyopathy with an enlarged left ventricle and an EF of 20 to 25%. The doctor prescribed Coreg, Prinivil and Digitek, and recommended I get a bi-ventricular pacemaker for the LBBB and to quit drinking and smoking cigars. I quit smoking cigarettes 5 to 6 years ago.
     Needless to say, I was somewhat surprised by all these findings. Up until this point I was (in my opinion) a completely healthy young man of 39 years of age. My only possible CHF symptoms were an occasional feeling that my breaths were not going all the way down into my lungs. This usually only occured during very stressful times at my job. I went to a cardiologist at Emory University for a second opinion and a heart echo. The echo indicated an EF of 25 to 30%. This doctor took me off the Digitek but kept me on the Coreg and Prinivil. He also said he did not think I needed the pacemaker at this time based on how I felt.
     Approximately 3 1/2 months later my Coreg dosage is up to 12.5mg BID and 5mg Prinivil. I have not experienced any complications from the increasing doses of Coreg and all my blood work has come back normal. I don't go back for a followup echo until late July, 6 months from initial diagnosis, at which time we will see what effect if any the medication has had on my condition. With the exception of quiting smoking cigars and drinking, I have not altered my life style in any way nor do I feel like I have CHF.
     I don't monitor my salt intake, don't get fatigued, don't have unexplained weight gains, don't have shortness of breath and overall feel great! I am anxious to have the next heart echo done to see if there have been any changes, but do not feel like I have some serious heart condition based on how I currently feel and have always felt. If not for the bout of vertigo that indicated the LBBB, I would have continued living my life as usual. Any opinions from those of you who are actually suffering from CHF? I honor you opinions whatever they may be. OPPBOP@aol.com


Jon's April 20 reply to Paul's April 20, 2002 - Hi Paul, You could be making a huge mistake. I was diagnosed at age 36 with an EF of 13%. I worked in lumber mills and pumped iron for well over a decade and I know how fit I was. My arteries tested completely clear at cath, and I had little trouble titrating Coreg clear up to 50mg BID.
     I felt great after the initial treatment began. I trimmed trees, did other yard work, worked in my wood shop, did housework and mostly whatever I wanted to do.
     Over the next 7 1/2 or so years I have slowly gone downhill and feel much worse than I did then - and I did make all the proper life style adjustments. My numbers are much better but I have less energy, more memory loss, and more general CHF symptoms. Again, I stress that this is with proper meds, lifestyle adjustments, and a good attitude. I think I'd be dead now without all those things from day one in my CHF life. I should note though, that I do pretty well for someone who started with my numbers. ;-)
     Now, you may be lucky and if you got diagnosed quickly after actually getting cardiomyopathy - something you have no way to know - your heart function may be completely regained. However, don't count on it. When you lose half your heart function and don't take it seriously because you "feel" good, then you are playing Russian Roulette. It's not rocket science: you lost half your heart function. Now, do you really think you do not at all need to adjust your life style?
     This is what they call a no-brainer. That may sound harsh, but there you have the opinion of one real-life CHFer with real-life experience under his belt. Get with the program or you are gambling with your life. Hey, it's your life. Jon.


Richard M's April 20 reply to Gary James's April 18, 2002 - Hi Gary, I live to eat and I lost 150 lbs. All I did was learn how to eat better. There is no reason you cannot eat some of the foods you love to eat in moderation. I have read nothing that said you cannot eat chocolate. There is chocolate out there without salt and it is very good. So help yourself and learn how to control your eating habits. Malczew@ameritech.net


Julie S, April 20, 2002 - Hi, Thank you Jon and Lisa for replying to my post. I know that wondering what might have been will not change things now, but one just wonders at times. Thank you for your input! I am trying to just move on with things and maintain a good attitude despite feeling so tired. Work is really getting me down. I work 12 hour shifts and it exhausts me.
     I love this web site Jon! It is very informative and I love all the support from others in the same shoes as me. A lot of people think that because I am a nurse I know it all but I don't, and will freely admit it. :-) It is awesome and you do a great job. I actually recommended it to a patient that I took care of Wednesday night, a very nice younger man who was just diagnosed with CHF. Keep up the good work. wrinklybuttwiper@aol.com


Tony T's April 20 reply to Tracie S' April 19, 2002 - Hi Tracie, When I've attempted to reduce my Lanoxin, I've had major difficulties with increased palpitations, tight chest, and feeling faint. In my case, I had to reduce very slowly. My first attempt was to cut down from 0.25mg Lanoxin to 0.21mg Lanoxin (5/6th of a pill). I had no serious side effects until the third night of the reduction, and it took until the tenth day of reduction before the palpitations and faintness started getting better. I haven't been able to reduce to 0.125mg Lanoxin yet. t0nyt@yahoo.com


Sherry, April 20, 2002 - Hi, I have had two heart attacks, open heart surgery at age 36 (I am now 48), angioplasty with stent, along with numerous bouts of congestive heart failure. I am now being evaluated for a heart transplant. My question is this, I am beginning to get these bad feelings that I cannot explain. It justs pops up out of nowhere, no pain or nothing. Please help me! SherryNewheart@aol.com


Karen F's April 20 reply to Derald G's April 17, 2002 - Hi, I was diagnosed with my first bout of CHF in February of 1986. I was probably starting to show undiagnosed symptoms a good year and a half earlier than that. The doctors didn't think I was going to leave the hospital alive. Well, I left the hospital and was fairly well compensated for all these years. I'm still here at age 43 (don't turn 44 until August), am class 3, and just now in the process of being reviewed to start claiming SSD. So do I qualify for the still-kicking-after-all-these-years club? <g>
     My grandmother died of classic CHF in 1966 at the age of 61. She raised 9 kids and buried 3 others. As far back as my mother (a middle child) can remember, they were raised in a no-salt household because that was the way she was supposed to eat so everyone ate that way, and that is how the girls were taught to cook. Here I thought my mom was just a lousy cook because she never salted anything while I was growing up. <g>
     You can see from our old photos that even when Grandma was younger, she suffered from edema. I always just thought she was a nice fluffy granny, but now that the "children" (Mom and siblings) are in their 70s, they are starting to share more details and it is evident that Grandma had lived with CHF for many, many years before it won. ferhoodled@yahoo.com


Lou's April 20 reply to Gary James' April 18, 2002 - Hi Gary, You really gotta watch the salt when you have CHF. There are a lot of folks here that can tell you how fun it is having excess fluid drained off is. I get the same urges when I walk down the snack aisle, but I manage to control myself and get the unsalted stuff instead. True, it isn't quite the same, but you get used to it. One of my favorite snacks right now is unsalted sweet potato chips with homemade pineapple salsa. A year ago, I wouldn't have given that combination a second thought, but times change. Your life's in your own hands. What you choose to do with it is up to you. stormhawk@monstermenagerie.com


Lori K's April 20 reply to Julie's April 17, 2002 - Hi Julie, Excuse me but I don't want to forget to ask you how you came up with your e-mail address - I am afraid to ask, I think (Jon's note - I would prefer not to know, I mean it)
     To comment about your concerns, I also have a LBBB diagnosed 15 years ago. I had a baby 3 years ago and have complained of SOB for a year at least. I have had identical thoughts and had a lot of anger at first. I don't know why your doctors did not question swelling of the ankles. It sounds like he was not listening, or thinking! My EF was 38% in November and went up to 55% in 2 months. Stay positive. Get better. Find a different doctor! Lori. thegoof86d@aol.com


Derald G, April 20, 2002 - Hi All, Today, finally after 6 months I got to visit and talk to a real CHF specialist in Portland, Oregon. My wife cautioned me that because I waited so long I had really built up my expectations too high. She had me scheduled in for one hour and ended up spending almost 2 hours going over my records and tests. She really understood my symptoms and immediately wanted to put me on Coreg, which I thought would be a good idea too. She pronounced me as having a milder case of DCM that has improved on the ACE inhibitor alone.
     She was also impressed that I knew so much about my condition and had already started the low-sodium diet, weighing every day, etc. I explained how much I had learned from this site. She had heard of it, which was cool.
     I also got a copy of Dr. Silver's book which is great. This CHF doc's had a lot of patients complain about foot and leg pains too, but it's a mystery. My thanks to Jon and all of you for encouraging me to find a CHF specialist and learning to get involved with my condition. I would really bet that this site has prolonged and saved lives. deraldg@earthlink.net


Ben B's April 20 reply to Derald G's April 17, 2002 - Hi, My dad has had CAD at least 30 years, and CHF around 20. He was going okay until he went in for a stent a couple of weeks ago. Now unfortunately, he is in the hospital for several days with a terrible staph infection. A couple of days after the stent procedure he started feeling achy and feverish. He called his doctor but got his idiot partner, who told him it was normal to feel like this.
     When you've just gotten out of the hospital, that is basically what you want to hear. Finally, after 2 more days with the bugs stewing in his system he reached a 102° temperature and we forced him into the ER. Now his bones, heart valves, and kidneys are all infected with this junk. He is in agony and terribly weak. I think he will make it, but nobody knows yet the damage to his organs.
     This is a cautionary reminder. If you start feeling flu-like symptoms immediately after a surgical procedure, get in and demand blood cultures! Nobody knows what will kill us in the end. In some cases it might even be our treatment! I think caths are for the most part very safe and necessary - just be cautious. bdbrinkman@juno.com


Fred D's April 20 reply to Gary James' April 18, 2002 - Hi Gary, Get a grip on it, buddy. Any recovering addict will tell you that the urge to consume only lasts for about 40 seconds, then it's gone. I have to stay away from the forbidden fruits, and the only way that I can do that is to stay away from the forbidden fruits. Don't have them in your home and don't go to places that serve them.
     It can be tough, but it can be done. Pretty soon you hardly think about them. Ask anyone who has successfully stopped smoking/drinking/chewing for any length of time. They will tell you that they still think about their vices but when the urge hits, they hold out for 40 seconds until it passes. You can do it. Realize what is at stake.
     And shame on you guys for your lack of compassion. We are all in this thing together, nobody really wants to die. jdeal@alltel.net


Shelby H, April 20, 2002 - Hello all. I just got back from a week at Club Med. :-( I was having constant nausea and arrhythmias. It turns out that I was dehydrated - too dry! Has anyone ever heard of this? I was following my low sodium diet and taking my diuretics, but my blood pressure was very, very low and I was nauseous all the time. They finally did a right heart cath and discovered that the pressures in my heart were very low, meaning I was dehydrated. They took me off the diuretics and put me on a "regular" diet in the hospital. Boy, they weren't kidding about regular diet; I got bacon for breakfast and potato chips with lunch!
     After getting my potassium up to acceptable levels, I started tolerating the other meds (Zestril and Coreg) a lot better. They said I was very unusual in that I was not retaining any fluids and actually draining too much. It figures that I'm the exception to the rule. I'm back on the low sodium diet again now. Also, they implanted an ICD. I have a Medtronic GEM III. I've read a lot of conflicting information regarding the magnet issue. Do high power magnets actually erase the programming of the ICD, or does it just "mask" the ICD and render it dysfunctional while I'm near the magnet? Also, are those hand-held metal detector wands that they use at the airport okay or not? Some say it's okay as long as they don't hold it there, others say no. Does that reset the ICD so I should go back to my doctor, or does it just mask the ICD, meaning that it won't work while it's there? Thanks, Shelby. shelbyscout@hotmail.com


Jon's April 20 reply to Shelby H's April 20, 2002 - Hi Shelby, Dehydration occurs quite often in CHFers - often enough that it is noted as a possible cause of 3 CHF symptoms in The Manual. Dehydration is what doctors mean whenever they say "too dry." It is not from a low sodium diet and I am surprised they changed your diet as part of a fixing the problem. A CHF specialist checks you for dehydration at every physical exam with his hands: checking your liver, neck veins, and legs and ankles to do so. Still, it happens easily and we all have to watch out for it. Nausea, lightheadedness, or a feeling of fullness in your abdominal area can all point to possible dehydration.
     I am not sure where you are looking for your ICD info, but I strongly recommend that you go straight to the manufacturer! You can find links to Medtronic's ICD info on my ICDs page. ;-) Look at the WWW Links under "What may interfere with your ICD - A quick guide" Jon.


Noel Palmer, April 21, 2002 - Hi I have had severe DCM and CHF since 1990, and also have diabetes. I had a CABG in November of 1987. I am being treated by VA and things seem sooo slow there. I just had a perfusion scan that showed 469% heart enlargement and an EF of 12%. I have never heard anyone talk of stage 1, 2, 3, or 4 pertaining to my condition. However, the doctor in charge of radiology that did my scan said she had never seen anybody with so much heart enlargement. Yet the cardiologists seem to be dragging their feet with everything that needs to be done.
     Does anyone have an opinion about private care versus VA/Medicare/Tricare? I'm retired military. I just feel so bad and like I am going to croak while the present providers keep taking their sweet time doing everything. Any opinions appreciated. Thanks. noel-palmer1@juno.com


Derald G's April 21 reply to Gary James' April 18, 2002 - Hi Gary, You got some rough answers, but you're talking to other people that had to knuckle down and change their life styles too. I seriously urge you to seek professional counseling to help determine why you have a death wish. Most of all, pray to God for guidance in this matter. This is serious, serious stuff. deraldg@earthlink.net


Dan's April 21 reply to Derald G's April 17, 2002 - Hi, Reading replies to this one shocked me! I've had CHF for 11 years now, and my EF has been measured at anywhere from 12% to 18%. I eat what I want (although friends do say I eat healthier than most), do what I want, and don't let my heart slow me down. Shortly after my MI, the cardiologists raised the possiblity of a transplant, but after seeing what I can do, no one can justify it. I expect to live another 30 to 40 years with my heart even though I'm getting a defibrillator put in in a couple of weeks. danpatricia.hunt@prodigy.net


Jon's April 21 reply to Dan's April 21, 2002 - Hi Dan, Count your blessings - you are highly unusual. I noticed you said that, "[I] don't let my heart slow me down." I don't let my heart slow me down either; it slows me down all on its own. <g> Jon.


Ralph H, April 21, 2002 - Hi, You may want to read the press release by GSK on www.coreg.com/patients/coreg and the warnings the manufacturer cautions. I have S3 and PVCs. Acccording to the press release it says not to take Coreg if you have an irregular heart beat.
     I have learned that there are so many different side effects from these drugs that you have to adapt your own personal guide lines. I have another person whom I met at a patient seminar and he gave me another book called "Adrenalin and Stress" by Dr. Archibald D. Hart. I know I have to lower stress or take more adrenalin blockers. Digoxin made my heart pound so much I had to reduce it. According to the package insert of Coreg (you must get and read) you should not take it if BP and pulse go below a certain level. Coreg also has a quick release compared to Toprol-XL. Do not take herbs like hawthorne because they can ineract with Coreg. I learned after an injury that some precautions should have been taken. I have learned much on this site and others. I learn more from these sites than from my doctors. Thanks for the info on breast pain and drug possible cause. ralph_hartzell@hotmail.com


Jon's April 21 reply to Ralph H's April 21, 2002 - Hi Ralph, It can get tricky coordinating a lot of information, that's for sure. For instance, Coreg is a class 2 anti-arrhythmic drug that is used for ventricular arrhythmias and a-fib. It is only a couple of specific kinds of arrhythmias that are a caution to Coreg. Only bradycardia - a very slow heart rate - is usually considered a road block to Coreg use.
     Drug cautions are usually a mile long (even for stuff like aspirin) and most don't apply to very many people. On the other hand, people react so differently to the same drug - as you so rightly noted - that we do have to watch out for weird side effects.
     I just didn't want anyone to be scared because they have an arrhythmia and take Coreg. ;-) Jon.


Herbert L's April 21 reply to Gary James' April 18, 2002 - Hi, After salt intake, stress control is very important. the-honey-do@charter.net


Tom S' April 22 reply to Tom S' April 21, 2002 - Hi, It sounds to me like you are depending on the VA for primary medical care, of which I have little or no experience. I utilize the services of the VA medical system primarily so that I can obtain low cost prescriptions. I don't know what my heart enlargement is but I know it's substantial and a recent echocardiogram indicated an EF of 25%. Prior to that I had an EF of 35%.
     For primary cardiac care I rely solely on a professional medical group that specializes in the care and feeding of the human heart. Perhaps you might want to check out such an alternative in your area if you are not satisfied with the level of care being given at the VA. Perhaps going with a group that deals with such cases on a day to day basis would be in your best interest. I know my group has over 500 patients so I can feel confident that they are familiar with all types of heart conditions and how to deal with them. bhigheart@hotmail.com


Joseph P, April 22, 2002 - Hi, The nurses at the CHF center that I go to said that the heart meds would make you dry mouthed, so to brush your teeth more often because this dryness causes tooth decay more rapidly with the dry mouth. I brush mine twice a day and I can see some erosion in them, not too bad, but I can see a little since the heart meds. Joseph P. joeandol@shawneelink.net
 
Jon's note: good point


Phil S' April 22 reply to Noel Palmer's April 21, 2002 - Hello Noel, I get my care from the Cincinnati VA. Two years ago they had a really good heart doctor in the clinic there, but she left to get some more education and start her own practice. I haven't seen a cardiologist at the VA for over a year. The one who replaced the good doctor said that I didn't need to see a cardiologist anymore although my EF is still at 30% and I have all kinds of problems. I wouldn't have wanted to see her anyway.
     If you can afford to go to a private CHF doctor, that would be best. Sometimes the VA doctors change so much and you don't always get a good one. I asked once what class they thought I was in, and I got the answer, "Well, I would have to see how much you could do and do some more tests" none of which they ever did.
     Lately while I was in the hospital after going to the ER, I got to see the cardiologist who did my bypass in 1994. I am now trying to find a way to see him regularly if the VA can't get me a good cardiologist. If I am not mistaken, your Tricare should pay for your private doctor. I would definitely find a good CHF specialist and pay the extra that Tricare won't pay if you can afford it. The only way to do it, if you have to use the VA Hospital, is go into the ER there and tell them you have chest pains and feel like you can't go on. Then they usually give you a good cardiologist and do all the necessary tests. Good luck, Phil. gene51s@netscape.net


Jermey, April 22, 2002 - Hi, I have noticed a lot of comment on Coreg. I have been on this for about 3 years. In the UK its carvedilol. I have DCM and started on a Coreg dose of 3.25mg twice a day. I am now on 50mg twice a day, plus 40mg Zestril a day. I understand this combined system works well. I have as yet not found anybody on this level. Do you have any information on the use of combined drug therapy? It does lower your blood pressure. Mine is 80/50 at low spells, and up to 110/70 at high times, with a pulse of 45 to 50 beats per minute. There is of course also the furosemide and Zantac. If anybody has information, please help. I have improved since taking the tablets and going to rehab to keep fit helps too, but they seem to last for a period of time and then lose their effect so the dose is increased and I understand this is now at the max. jeremymead@btconnect.com
 
Jon's note: Follow the links in your post and then see this page to find info fast


Richard's April 22 reply to Noel Palmer's April 21, 2002 - Hi Noel, From the stories I hear, it depends where you are getting treated. There are some very good VA hospitals and some very bad VA hospitals and it also pertains to their doctors. I myself would never let the VA take care of my medical problems. I have heard too many bad things. If you feel its taking too long, go to their ER and keep going till they take care of you. malczew@ameritech.net


Tammy B's April 22 reply to Scott Brown's April 21, 2002 - Hi, and thanks for your reply, Scott. My prayers are with your dad. After reading your reply, I realize that I did not receive a lot of information during my latest Club Med stay. Other than the EF number, I still am not sure exactly how decompensated I was or what the blood test (electrolytes) results were.
     So I've made an appointment to view my hospital records next week. I also took your advice and tried cutting back even more on the fluids, to one quart versus 2 quarts. So far I don't seem to be getting any more "belly bulge" <g> but I'm lightheaded and kind of off-balanced. Now I have these nasty blisters in my mouth (I think it's from a dry mouth). Does anyone have experience in cutting back fluids, and mouth problems? Could I be cutting back too much? Thanks! mom4grls@cfl.rr.com


Jon's April 22 reply to Tammy B's April 22, 2002 - Hi Tammy, Please immediately take your fluid intake back up to at least 2 quarts a day for a week. You sound like you're dehydrated and that is not good at all. If, after raising your fluid intake, you don't lose the lightheadedness, please call your doctor and see him as soon as possible.
     If you have chronic problems with edema, it is likely that your meds therapy is not aggressive enough. It's better to adjust that than to drop below 2 liters of fluid intake a day. The 2 liter mark is a good general standard, although some people may need to go below it - most do not.
     If your ACE inhibitor dose and beta-blocker dose are at target levels - and they really should be - you may need to change diuretics or add a second one, or take them at different times of day instead of all at once. This is all discussed on various pages around here, including New CHF Meds, page 2, The Manual and the CHF page. Be sure to read up around here, then talk to your doctor. Dehydration can cause arrhythmia so it is not a minor matter. Jon.


Joe R's April 22 reply to Gary James' April 18, 2002 - Hi, I can't believe all the responses to this guy. All I read was someone trying to get attention by rubbing in that we can't eat what we want anymore. There are more important things in life than a guy that doesn't even care if we live or die. I start a CHF clinic tomorrow and hope to get good things out of it, but spending time on this guy is not worth the hard-earned breath it takes to speak.
     I soon hope to start my rehab for my DCM and class 3 CHF. I tried to return to work 2 weeks ago and ended up in Club Med for it, so I hope this will get me going in the right direction. If not, I already filed for SSD and hope to hear in about 2 months. It's not much money so we will have to sell house, but hopefully, we can survive on it. bigjoeone@aol.com


Jon's April 22 reply to Joe R's April 22, 2002 - Hi Joe, I sure hope you get a smooth SSD approval! Cardiac rehab can really help but it can be tough - stick with it!
     In case Gary James really is a CHFer, I had better make a comment on the responses to him, including mine. If your heart loses half its function or more and you don't take it seriously, then no one can help you with anything. Before anyone can help you, they have to somehow convince you that your problem is real and that it is very serious.
     Gary seems to think his problem is minor because he feels good right now. The responses to him here seemed to me aimed at waking him up to his situation's reality. The heart keeps you alive. His is severely damaged. He has to understand that before we can do him any good.
     Regarding compassion, that is a loaded word these days and should be used very carefully - unless the user can read the speaker's mind - and that isn't likely. Compassion is useless without beneficial action resulting from it. People were trying to help Gary stay alive by shocking him into a realization that he had better get serious about staying alive - he doesn't seem too serious about it yet, it seems. I am sure others may see those posts differently but they didn't seem overly harsh to me, considering. Jon.


Tracie S' April 22 reply to Tony T's 20, 2002 - Hi Tony, Thank you for responding to my post. :-) I am on my sixth day of reducing my digoxin from 0.25 to 0.125mg and it actually seems to be getting a little better. I am still dizzy and lightheaded, but it doesn't seem to be as often and as intense. Are you still going to try to reduce your dosage to 0.125mg or have your side effects to the digoxin lessened?
     Do you get your potassium levels checked often or at all? After a lot of research (no thanks to my doctors or pharmacist) I learned that having a low potassium level can create a toxic effect on digoxin. I would bet that was one of the major problems I have had on digoxin. I have a history of low potassium levels for many years. Of course, no one ever bothered to ask or inform me of that. It makes sense to me now why you can't take diuretics when you are taking it, because they will deplete the potassium in your body. High calcium levels can also be a problem. You may already know these things. Just in case, I wanted to tell you because it may help. Hopefully, we can both be rid of this rotten drug soon. Take care, Tracie S. traciesagara@hotmail.com


Jon's April 22 reply to Tracie S' April 22, 2002 - Hi Tracie, I'm glad you are reducing side effects successfully. I have a couple of comments. I am not getting on your case, Tracie! :-) I just feel that an innocent comment that is incorrect can scare a lot of people, so I pop up and try to help everyone understand something now and then.
     I am surprised that a doctor would put you on digoxin and keep you on it if it did not make you feel better. Digoxin does not improve mortality. The reason it is prescribed is to improve quality of life and possibly reduce hospitalizations. If you were not feeling good from taking it, it should have been quickly discontinued. You might want to consider if your doctor is paying enough attention to your symptoms - or if you are telling him enough about them.
     I want everyone to know that you can take both digoxin and diuretics very safely and with great effectiveness - about a million people do so. Potassium level is important for several reasons, and any responsible doctor (and every CHF specialist) will check your blood level of potassium regularly if you take any of several drugs. You can read about it at the Routine Blood Testing page. I just didn't want anyone taking both drugs to panic. <g> I took both for years without any problems at all. Jon.
     Finally, I realize how you meant it <g>, but I want to be sure everyone knows that many, many people with heart failure will feel better by taking digoxin -it's not a rotten drug at all. In fact, it is the oldest heart failure remedy known to man (foxglove). It can help keep most CHFers out of the hospital.


Marty's April 22 reply to Jon's April 21, 2002 - Hi, Thanks for posting the anti-arrhythmia information concerning Coreg. I have persistent a-fib and I have been on Coreg for 2 1/2 years. It has done wonders in calming my heart rate and irregularity. MartinBK@aol.com


Jen, April 22, 2002 - Hi, I just found this site and am a little confused. I was wondering if anyone here ever heard of, or has, post-partum cardiomyopathy or peri-partum cardiomyopathy. You get it during the last months of your pregnancy or the first 6 months after the baby is born. lizardqueen_@hotmail.com
 
Jon's note: The Archives now has a search engine :-)


Keith, April 22, 2002 - Hi, Is there anything else that I can do for my constant thirst? I am drinking too much fluid and it is a problem for me. k.sondrup@attbi.com


Gary James, April 24, 2002 - Settle down you lot. Why is it that I can read of people with CHF and who can't stop smoking? How dumb of you to start in the first place! Now you give up when you find out you have a problem! I was merely stating a truth, that I am having a problem eating too many salty foods, which was never a crime until my diagnosis. I was obviously wrong in thinking I may get some help in here. qldsno1dj@hotmail.com


Susie O's April 22 reply to Noel Palmer's April 21, 2002 - Hi, I go to the VA medical center near me and have had excellent care. I see my PCP roughly every 6 months and my cardiologist roughly every 4 to 6 months. I have seen the cardiologist for 3 years. I have seen our local VA improve greatly over the past 7 years; that is how long I've lived here.
     Are you being seen at a large VA hospital or at a smaller one? In the northeast there is a network of VA centers. If anyone is not satisfied with his care at any medical facility, you should contact the Patient Advisor and lodge a complaint or ask questions about seeing other doctors. My PCP has interns and residents from the medical school who come and spend time, but I have said that I prefer to always see my doctor and so far have been able to, since I made my request. So much for my soap box for the VA. <g> I hope you find the care you need to have, and soon too. texlady1@hotmail.com


Derald G, April 22, 2002 - Hi, Today I start on Coreg. I've read the page on this web site and will watch for symptoms. I hate the fact that I'm already genetically at risk for diabetes, but a healthy heart is more important. I've got two doctors recommending it now.
     Do you have any idea what kind of average heart rate a normal middle-aged man would have after climbing 2 flights of stairs? I've looked here and on the Internet for average rates at different activity levels without success. deraldg@earthlink.net
 
Jon's note: Did you try the Merck Manual?


Jacky, April 22, 2002 - Hi all, I am so tired after a day at the doctor's office and an echo (just whining!). It is a 150 mile round trip, but I have complete trust in the doctor so it is worth it.
     I stopped taking Zestril a couple of weeks ago because my cough became unbearable. I am now on Diovan. Can I expect the same side effects? I keep asking the doc questions because I am waiting for him to say, 'That doesn't apply to you, you are okay." I hardly believe this cardiomyopathy bit. I guess that is denial. I should be over that by now, Jacky. jackymwb@aol.com


Stephanie's April 22 reply to Gary James' April 22, 2002 - Hi, I agree that people should lighten up. This is not easy for any of us. We all struggle with different things at different times. Continuing to condemn ourselves and each other does no good. It seems every few days I have a new struggle to deal with and sometimes I just get tired. Gary, it is obvious to me that you do care or you wouldn't be here talking to us, Stephanie. moodystephanie@hotmail.com


Mel G's April 22 reply to Jon's April 22, 2002 - Hi, Maybe Gary just needs permission to be human. There are obviously a lot of us who can relate to his concerns about lifestyle changes. Yes, it's all very serious. It's also a lot to swallow when you're first diagnosed. You've still got to live. I was a good little patient after my diagnosis of DCM. I went to the ER as a stage C CHFer with an EF of 30%, then 28%, then 22% and there was talk of a "pre-transplant" work up. I was put on meds and discharged. I was absolutely rigorous about low fat, low sodium, no alcohol, and increased physical activity.
     After two months my EF was 45% and after four it was 52%. At my four month check I gave my cardiologist a printout of my daily weight, BP and pulse measurements that I'd been taking, which he handed directly back and said, "I don't need that." To questions about my current health and future prognosis, he said, "Why are you so worried? You should be scampering around having a great life."
     Needless to say, I came home thinking, "He thinks I'm over-reacting to everything" and added salt to my dinner and had a glass of wine! It is hard being convinced that your current life style habits are harming your health when you feel well. I am sympathetic with Gary. With a husband and 4 teenagers, our house always has high sodium processed snack foods (BBQ Shapes, yeah!) around. Like Fred said, I give it 40 seconds and look the other way or sometimes I just grab one and eat it. If I do, I get over it! You just can't continue beating yourself up or letting anyone else berate you for it.
     Understand that you're adjusting but that you're still human, and you aren't perfect. ;-) You've got to know though, that increased sodium is going to seriously harm your health, whether or not you believe right now that it will.
     I don't know if it's our job to help Gary stay alive. I reckon that's up to Gary and his doctor, but to help him live with himself, yes. How can you say compassion is useless? From what I see it's what you've shown for CHFers since the beginning and it's why so many thank you so often. That's what it's all about. I know we all benefit from the sympathy and understanding on these pages, and as a result become better contributors to our family, coworkers and community. falmouth@bigpond.com


Jon's April 22 reply to Mel G's April 22, 2002 - Hi Mel, On compassion, you did not read what I wrote. Please re-read it. For what it's worth, I don't deal here in compassion, which is simply an emotion. I deal in "brotherly love." That is an action to seek the best for your brother; a whole 'nuther ball game, and one that doesn not always mean being "tolerant." ;-) Jon.


Joe W's April 22 reply to Noel Palmer's April 21, 2002 - Hi Noel, I rely on the VA medical system for all my medical care; I have been since January of this year and so far have been very pleased with the quality of care I have received. I do believe a lot depends on you PCP in any medical care. Mine is very patient with me and extremely understanding of my condition. I have an EF of 20% and he orders test that I don't even ask for. I was getting my medical care from CHF specialists here who are the heart transplant team in my city. I was not pleased with them at all and won't see them again. I do believe from what I have heard around the VA hospital that it depends on where you go in the system. Good luck and get better. josephwarr@aol.com


Tom S' April 22 reply to Keith's April 22, 2002 - Hi, My answer to the thirst problem has been to carry around a thermos cup of crushed ice. It did take a little while to get accustomed to the cold in my mouth but it does quench that awful thirst that accompanies Lasix and other drugs. In general, I go through about two trays of ice in a 24 hour period, and I do keep a stadium cup filled with crushed ice next to my bedside in case I wake up at night with a really dry mouth.
     The other thing I keep at bedside is some of those heavy duty mints. They seem to accomplish the same task and sometimes for longer than the ice. bhigheart@hotmail.com


Dan's April 22 reply to Jon's April 21, 2002 - Hi Jon, You'll give me a complex, saying I'm highly unusual like that! Seriously, I do know that I've been very blessed to be able to do what I can do with the way my heart was damaged.
     Thanks to the folks who wrote to tell me of their experiences with ICDs. It certainly makes me less apprehensive about the proceedure, hearing from others who've already walked that mile. danpatricia.hunt@prodigy.net


Dawn B's April 23 reply to Keith's April 22, 2002 - Hi Keith, Before I received my heart transplant I had a long battle with dry mouth. My appetite was terrible and I was allowed 2 liters of fluids a day. A nurse at Club Med suggested frozen slices of fruit. Just about any fruit can be be used. It helps with that 5 to 10 servings a day. <g> Just be careful if you are diabetic to watch your sugar levels. gdbeckford@sympatico.ca


Mike, April 23, 2002 - Hi, I was diagnosed with CHF 2 years ago. It seems it came from CAD from a major MI in 1989 and a leaking mitral valve from a childhood illness. I had an EF of 27% that has increased to 40% with medication. I am in constant a-fib (not fast or slow, irregular). I've been turned down twice for SSD and now am waiting for a hearing date. I seem to have a good attorney so I hope for the best, but what a trial. I have most of the symptoms that I read in these posts except I have not been hospitalized; just lucky I guess. Thanks for this site, Jon. I log on every day just to make sure there are more out there like me. I don't feel so alone. mikesisbell@aol.com


Craig A, April 23, 2002 - Hey Jon and Folks, I was reading the following at http://www.haoyah.com.au/english/food/health6.asp: "Researchers have found that, in general, the more fish people eat, the less coronary artery disease they have. Fish contain high concentrations of a unique type of fat, omega-3 polyunsaturated fatty acids (PUFAs). In addition to lowering blood fats (triglycerides), studies suggest that omega-3 PUFAs make the blood more slippery and less likely to clot. A unique study completed in 1997 provided compelling evidence that eating fish can reduce blood cholesterol levels. Researchers studied people in two African villages located 40 miles apart. People from both villages had very similar lifestyles, but their diets were quite different. While one group ate a fish-heavy diet, the other group ate a healthy vegetarian diet consisting largely of rice and maize. Researchers found that the villagers who ate lots of fish had lower cholesterol than the vegetarians. The American Heart Association recommends eating fish two or three times a week."
     What do you think? I haven't actually read anywhere about fish for CHF. Thoughts? bayce@joynet.com.au


Noel P, April 23, 2002 - Hi, I have had relatively constant pain since my CABG in November of 1987 and have had more numb chest pain since my heart failure started in mid-1990. I take so many prescriptions that I'm sure that some of these may also worsen the pain. I take tylenol with codeine occasionally when I feel like I can't handle it anymore and then I regret the side effects.
     Is CHF normally painful all the time? If so, what do people do for it? I have also tried Capsaicin pepper creme but they aren't 100% effective and are very hot when we have our extremely hot summer weather. Has anyone tried smoking cannibis (pot) for this type of pain;? Also, would it maybe help with nausea which I often have, probably also because of prescription drugs? Thanks. noel-palmer1@juno.com


Steve H's April 23 reply to Tom S' April 22, 2002 - Hi Tom, Sucking on ice is not an option for me because it is still fluid intake. My doctor suggested lemon drops when I have dry mouth when I first went into the hospital and I have been using them ever since with great success. I hope this helps, Steve. aholland@alltel.net


Tina Mount's April 23 reply to Keith's April 22, 2002 - Hi Keith, On the thirst issue, hard sour candies usually work for me! I usually keep Jolly Ranchers in my desk at work for that sort of thing, Tina. mickjordmoll@hotmail.com


Joseph P's April 23 reply to Mel G's April 22, 2002 - Hi, What is the big deal about sodium? We all know to watch our intake. What I do is look at the sodium content on the package and it tells me the amount in the product that I want to buy. Like, I may be able to eat 5 or 6 potato chips. 400mg per meal is a good average for my intake, so I watch some foods closely and others not so closely. What I have found is that natural foods from the garden also contain a certain amount of sodium. Joseph P. joeandol@shawneelink.net


Tina Mount, April 23, 2002 - Hi, Does anyone know of a homemade low-sodium spaghetti sauce recipe? I have tried to search for one in a jar and have had no luck finding a brand with low sodium. Also, does anyone know of an online web page that shows sodium levels in different food items such as fruits and vegetables? Thanks, Tina. mickjordmoll@hotmail.com


Jack D's April 24 reply to Tina Mount's April 23, 2002 - Hi Tina, Here's two simple ones:

Heat the oil until it just starts to smoke. Throw in the ingredients and stir until the garlic browns. Pour over cooked and drained spaghetti.

Second recipe: Make the first sauce and set aside. Boil whole fresh tomatoes until they are soft, then drain and mash. Continue cooking over low heat for several hours or until sauced. Add the oil mixture and whatever else you want, except salt. Or you can use canned No Salt Added tomato sauce. maddjak@hotmail.com


Lou's April 24 reply to Tina Mount's April 23, 2002 - Hi, If you can find it, Francesco Rinaldi No Salt Added Pasta Sauce is great. It does have about 80mg of sodium per serving because they add Romano cheese, but compare that to Ragu. As far as homemade, the all-purpose marinara I use is as follows:

Sauté the onion in either 3 tablespoons extra virgin olive oil or in olive oil flavored Pam till they become translucent, then add the garlic. Saute for a few more minutes, but don't let the garlic brown. Add the tomatoes and bring to a simmer. Add the sugar and herbs and let simmer for 10 minutes, then taste. Add the pepper and any more herbs you might think it needs, then simmer for another 20 minutes, stirring occasionally. I use this for everything, including sauce for low sodium pizza. Give it a try and let me know what you think. stormhawk@monstermenagerie.com


Walter K's April 24 reply to Keith's April 22, 2002 - Hi Keith, I had a chronic sore throat and dry mouth for years, predating my CHF. The dryness may have been aggravated by CHF meds later. Anyway, I saw lots of docs about it but none could help until one otolaryngologist prescribed Evoxac, a medicine none of my docs - including my CHF doc and my PCP - had heard of. The otolaryngologist, knowing I have CHF, told me to check with my CHF doc before taking it. They researched it and said okay.
     It has really helped with dryness. It is normally for people who have sjogrens, a bad disease which causes extreme, extreme dryness of mucous membranes. The last thing a CHFer wants is another med, but this one did help me and I can't ascribe any bad effects to it so thought I'd pass it on. Ask your doc. I would be curious what they say about it, whether you wind up with it or not. Walter. hknoth@magpage.com


Karen F's April 24 reply to Tina Mount's April 23, 2002 - Hi Tina, Something that I have found indispensable for sodium counts reference is a paperback book titled "The Complete Book of Food Counts" by Corinne T. Netzer. It lists calories, carbs, protein, cholesterol, fat, and fiber in addition to sodium. Her book covers both generic and brand name foods as well as fresh, frozen, and fast food items. She even covers gourmet and health foods. It is set up so that it is quick and easy to find whatever you are interested in. The book has a bright yellow cover so it is hard to misplace. I bought my copy at the local mall book store, but I'm sure it is available through large online retail book sites as well.
     My fifth edition copy was published in January of 2001. I'm not sure if that is the latest current edition on the market or if she has released an updated version since then. You can even tuck this book in your purse for quick reference when shopping - something you can't do with a web site. ferhoodled@yahoo.com


Jacquie, April 24, 2002 - Hi, I was diagnosed with CHF in May of 2001. I am class 3 with an EF of 15%. I found this site and have made it my goal to find and to make every low sodium recipe I can. I purchased the low sodium cook book and buy most of my snacks from the Healthy Heart Market Thank you sooo much, Jon. I serve my family - husband, son, and 2 teenage grandchildren - the same menu that I eat myself. We have virtually removed all items that I choose to not have. I feel I am being kind to my family. Maybe they will not have to face CHF. lizofoz@attbi.com


Derald G's April 24 reply to Joseph P's April 23, 2002 - Hi, It's hard to watch the sodium at first. I'm embarrassed to say this but I kept a salt shaker in the car because they might not put enough salt and catsup in my McDonald's bag; but after about 2 months it really wasn't that big of a deal anymore. I miss the cigarettes way more.
     Anyway, I found a great snack here in the Northwest called Tim's Cascade Style potato chips. A one ounce serving (about 13 chips) only has 70mg of sodium, 0% cholesterol, and 9 grams of fat. That's 140 calories. They are crisp and very tasty. It's hard to find diet foods that healthy. Watch out if you're allergic to peanut oil. deraldg@earthlink.net


Lou's April 24 reply to Craig A's April 23, 2002 - Hi, I've read some similiar things about fish as well. The things I read were mainly about salmon and tuna, though. I eat quite a bit of fish and seafood myself, though I have to stay away from crab (grrrr!). I have grilled salmon at least once a week, as well as the occasional tuna or shark steak. Fish is loaded with protein, so if nothing else it can be great change of pace at dinner. stormhawk@monstermenagerie.com


Derald G's April 24 reply to Noel P's April 23, 2002 - Hi, I don't smoke cannibis but medical marijuana is legal in Oregon so I checked. CHF is not one of the "automatic approvals" like chemotherapy and glaucoma, so if it's not on the list I doubt it helps. Besides, I would think it would constrict arteries and do nasty things to us CHFers. I bet there are safer, legal ways to control pain and nausea. As usual, the best idea is to just come right out and ask your doctor. He won't turn you in for asking. <g> deraldg@earthlink.net


Jon's April 24 reply to Noel P's April 23, 2002 - Hi Noel, I don't know if smoking pot would help or not. Regardless, CHF itself does not normally include pain. Some CHFers get really bad foot pain and those with coronary artery blockages get angina (as well as a few without blockages). However, if it were me, I would really push my doctor to look for a specific cause for the pain, because it does not sound like "typical" CHF-related chronic pain. Anything's possible with this heart stuff though, that's for sure. I take 100mg Ultram (tramadol) TID for foot and lower leg pain myself, that only started when I got CHF. Jon.


Gene's April 25 reply to Tina Mount's April 23, 2002 - Hi Tina, I found a low-sodium spaghetti sauce in our local supermarket (Publix). The brand name is "L. E. Roselli's" and it has 35mg of sodium per 1/2 cup serving. Ask the managers of your local supermarkets if they will stock it, or if they can stock a similar product. A direct contact would be: L.E. Roselli's Farm, Medford, NJ, 08055. Good luck, Gene. eloliver@excite.com


Joseph P, April 25, 2002 - Hi, I have been having some stomach pain in the morning before I get up, so I try to layer my meds as I eat. I take 1 or 2 pills at the start of a meal and then a few more till they are gone. It helps me out a great deal with the stomach pain. Joe. joeandol@shawneelink.net


Jon, April 25, 2002 - Hi everyone, No posts showed up today so obviously I have a mail delivery problem. When it's resolved, posts will go up. :-) Jon.


Jon, April 26, 2002 - Hi everyone, My e-mail is totally down, and this includes my forms on site. I am sorry but if you post right now or have posted in the last 24 hours, I may never get your post. Please be patient - I have no idea what is wrong but am trying to contact my hosting service to discover the problem. Jon.


Jon, April 30, 2002 - Hi everyone, I just got off the phone with my web host and we got my server working so I am back, so to speak. However, due to the number of posts that came in when my script started chucking them my way again, it may take me a few days to get caught up. I'll start on it tomorrow. Jon.


Joe's April 30 reply to Noel P's April 23, 2002 - Dear Noel, It depends on the source of the pain. You should ask your doctor to try to determine that. If it is angina contracting of the arteries pain, there are some amazing studies on the advantages of treating vascular disease with arginine. Arginine oxygenates the blood, thereby relaxing and opening the arteries. If you'd like to see the posted studies check out www.heartbar.net/rep/angswaim. This has really helped a lot of people I know. joes@ados.com


Ralph H, April 30, 2002 - Hi, I was unable to send an attachment to some people who asked questions about a news release so I am presenting the address: http://coreg.com/index.html?=86, then look at "News Releases." I have maintained in the past that Coreg and digoxin have affected me with PVCs and am investigating this news release. I called GSK and have not gotten a reply about this news release. As I reduced my medication, my PVCs reduced. This is under medical supervision, of course. Jon, let me know what you think. ralph_hartzell@hotmail.com


Jon's April 30 reply to Ralph H's April 30, 2002 - Hi Ralph, It would be extermely rare for Coreg to cause or aggravate PVCs. Most people are given Coreg to decrease PVCs and most have great success with it. However, anything is possible with Rx drugs.
     Digoxin is a more likely culprit in this, I think. I assume you stopped or reduced dose on only one drug at a time. Changing more than one drug at a time prevents you from ever knowing which drug is actually causing the problem. Jon.


Tracie S' April 30 reply to Jon's April 22, 2002 - Hi Jon, I am sorry that I placed a negative post. I was only stating information from the insert of my Lanoxin (digoxin) box, under the drug interactions section. I first started taking digoxin 5 years ago, and in the very beginning it made me feel wonderful. It was the first time in my life that my fingernails weren't purple due to poor circulation. I did not start having serious side effects on digoxin until the doctor doubled my dosage during pregnancy.
     I am extremely disappointed in my physicians. I have been complaining about extreme exhaustion and feeling faint for over 6 months now and had a fever for almost 3 months prior to lowering my digoxin levels. I have spoken to two doctors, including my cardiologist, four nurses and two pharmacists that had really no information for me. I am currently searching my area for a new cardiologist. Unfortunately, I have decided to stay home for awhile with my baby and I am stuck with my husband's HMO plan, so that could limit me to seeing any doctor that I may choose.
     I do not take prescribed diuretics so I guess that I should not have commented? I was only relating the fact that potassium is depleted from your system when you take diuretics, and checking potassium levels is also very important. I am sure that is why it is common to give potassium supplements when prescribing diuretics. Anyway, I am very grateful for this board and for the feedback that I have received. Take care, Tracie. traciesagara@hotmail.com


Jon's April 30 reply to Tracie S' April 30, 2002 - Hi Tracie, There is nothing to be sorry about. Negative information is information. ;-) Package inserts are very valuable for drug info but few people get many of the interactions or side effects listed on them. One of the weird things about digoxon is that you can take it for years with no problems and then get side effects. That happened to me as well.
     All of us have been frustrated with our doctors from time to time and many of us have changed doctors to great benefit - myself included. Your blood digoxin level should have been checked regularly (every 3 to 6 months) and that should have tipped your doctor to any potential problems with drug dose. To everyone: if your doctor does not do regular routine blood testing on you, check into it and find out why. This is important. It would have spotted Tracie's problems and possibly allowed a drug dose reduction to prevent many of her symptoms. Her doctor was not on the ball.
     Tracie, it's fine to comment on something you haven't personally experienced. Really! We all do. I just try to be sure that people don't read one person's statement and panic because they are taking the same drug(s). It's mainly in how people state things. You said "It makes sense to me now why you can't take diuretics when you are taking it [digoxin]". That seems to state a fact. Certainly diuretics affect potassium and potassium can affect digoxin - all very true. However, this does not mean those drugs cannot be taken together very successfully. It's just in how a thing is said. ;-)
     To everyone, more posts later. I have had quite a few bad days in a row and I am so far behind there's no point in me trying to make one sustained effort to catch up. Jon.


Derald G, April 30, 2002 - Hi, This is my second day on Coreg at 3.125mg. Unless this is a placebo effect, I can't believe the difference it's making in my life already. My stress is almost gone. I had unbelievable stress and took Zoloft but that only helped a little. Today I realized I'm starting to feel normal; not only that, but I was almost happy. Then I thought about how long it's been since I was happy and felt good. I don't care if this makes me dizzy or tired. My norepinephrine count must have been off the chart. deraldg@earthlink.net


Joyce's April 30 reply to Jon's April 24, 2002 - Hi Jon, I read your post to Noel about pain. In your post you talked about foot pain. I have had foot pain off and on since 10/2001. I have been to ERs and several times to my doctor. They have no idea what is causing it. It goes from one foot to the other. It is so bad sometimes that I must use crutches. Could you go into more detail about the relationship between foot pain and CHF? I have told my doctor about this web site. He believes in it so much that it is now listed as a web site for Kaiser patients in metro Atlanta with CHF. You are great. Thank you. joie6800@aol.com


Jon's April 30 reply to Joyce's April 30, 2002 - Hi Joyce, There is no "recognized" relationship between foot pain and heart failure. With that said, let me tell you, the two are most definitely related! I base that on 3 things:

My personal experience
My foot pain started within 6 months of CHF diagnosis/starting meds. It is severe to the point that I take 100mg Ultram TID just for that. The pain killers do not eliminate the pain but make it tolerable. I have worked with some pretty bad injuries in lumber mills so it takes some real pain to make a dent in my life. I have no structural foot problems and blood circulation to my feet is good.
Reader messages
I have received too many messages from other CHFers saying that foot and lower leg pain started not long after their CHF to not connect the dots
CHF specialist nurse comments
I have talked to several CHF specialist's head nurses about this - the nurses who deal directly as liason between CHF doctors and their patients. All agree that many CHFers complain of foot pain that was not present before CHF diagnosis.

Doctors - including CHF docs - blow this off. The CHF doc says it is not related to CHF so talk to your regular doctor about it. The regular doctor says he can't figure it out. It's always that same story. Nobody really listens to us on this. I wish I had some solution but I don't. This is one that I can't even get my own CHF doc to take seriously!
     It is weird pain in some respects. I can go to bed with zero pain and wake up the next morning with severe foot pain before I even get out of bed. It can come and go during the day or be constant. It can stay the same or increase in severity as time passes. There is no connection to walking or exercising, but standing still for very long can make it worse. Changing when I take my meds or what meds I take together has made no difference. Changing my exercise routine has made no difference. I cannot seem to link this to diet either. The only things I know are these:

  1. My feet never hurt before CHF and I worked on concrete floors in steel-toed boots for years without any foot problems
  2. Within no more than 6 months after diagnosis and starting meds, my feet were killing me
  3. Staying off my feet makes no difference. At times, my feet start hurting after being off my feet all day
  4. The pain can creep up my lower legs as high as my knee but has never gone higher
  5. Shoes make no difference. Going barefoot, wearing house shoes, cheap shoes, or very expensive "correct" shoes makes no difference. Shoe inserts/supports of many types make no difference
  6. The pain is serious enough to be somewhat disabling all by itself - and I have worked through pain many times before, including classic migraine and cluster headaches, torn bicep tendon, 3 serious rotator cuff injuries, chunks of wood going through my hand, and more. I know pain
  7. Lack of sleep makes it worse

Well, I guess I got that off my chest, huh?! <lol> Jon.


Tina Mount, April 30, 2002 - Hi, Thank you for all the different recipes for spaghetti sauce. I am eager to try each one of them! I am having a lot of fun learning how to cook from scratch now. My husband is happy about it too, because I used to be the microwave queen! Although at first it was hard to find low-sodium recipes, I am having good luck now with the Internet plus a couple of books that I have purchased. Thank you all once again, Tina. mickjordmoll@hotmail.com


Larry's April 30 reply to Noel P's April 23, 2002 - Hi, I don't know if smoking pot will help your pain or not but my dcotor told me that it is 10 times worse on your lungs than smoking cigarettes. Don't be afraid to ask your doctor anything, Larry. cthornton@tc3net.com


Jacky B, April 30, 2002 - Hi, I started Diovan 2 days ago for cardiomyopathy. I do not have high blood pressure and the doc said to watch my blood pressure. I am "watching it" but what can I expect? How low can it go before I should be concerned? I asked the doc so many questions the other day I thought I would try this one with you helpful people first! Jackymwb@aol.com


Tracie S' April 30 reply to Noel P's April 23, 2002 - Hi Noel, Have you done any research on the medications you are currently taking? If you are taking several different medications, it is possible that there may be side effects. I have learned the hard way that not all quick fixes come without paying a price. You may want to outweigh the pros and cons of your medications' results. I hope that you start feeling better soon. Take care, Tracie S. traciesagara@hotmail.com


Craig A, April 30, 2002 - Hi everyone, This may be a little embarrassing and I'm a little scared after reading some of the responses to a certain salt eater but here I go. Does anyone know about the effects of Uprima on people with heart conditions and on the meds we are on? I have to say that as a 39 year old normal guy, I notice the meds I'm on have definitely made a little (no pun intended) difference to my abilities. I was wondering if this lasts forever.
     I have been on the meds for 8 to 9 weeks so far: Coreg, Lasix, aspirin, Ramipril, spironolactone. I have recently heard about Uprima and wondered if anyone else has, or if there are any other solutions? bayce@joynet.com.au


Pauline, April 30, 2002 - Hello everyone, I hope someone can help. I was diagnosed with heart failure in August of 2000 after severe edema and shortness of breath for about 2 years. I continued with the symptoms even after being placed on Lasix, and couldn't seem to convince the doctors that something was wrong.
     In July of last year I suffered a heart attack and was put on massive doses of diuretics and after some time, the edema was greatly alleviated. After searching for a doctor for quite some time, I finally made an appointment with one recommended by a friend. He said my blood pressure was elevated and changed my medicine to Lotrel. After two weeks on it I developed severe edema and rapid heart rate. The doctor prescribed hydrochlorathiazide to offset the edema. I had previously been on Cardizem and Inderal for several years but this new doctor didn't seem to like these medications and told me they could be poisonous in combination.
     Has anyone had similiar side effects to Lotrel, and if so, what was done? Also, has anyone taken Cardizem and Inderal in combination, and have they experienced any ill effects? Also, does anyone know anything about Dr. Grubbs, Dr. Alfieri, or Dr. Kaman? They are cardiologists in northern Delaware and have been recommended to me. Any help or suggestions would be appreciated. Thanks in advance, Pauline. VivaGesuAveMaria@aol.com


Chuck A's April 30 reply to Joseph P's April 25, 2002 - Hi, I was taking numerous pills without problem when my doctor added the beta-blocker Zebeta. For several months I suffered stomach irritation despite when I took it. I tripped over a web site that allowed me to enter all medicines taken and it returned the fact that there was a conflict between Zestril and K-dur, which I had been taking together for over a year. Moving the K-dur away solved all problems. I cannot find the web site now but it was helpful for complex interactions. cadams4160@aol.com


Tina Mount, April 30, 2002 - Hi, I was wondering if anyone else was from central/southern Ohio and could recommend a good cardiologist. I am about 45 minutes south of Columbus. There is only one cardiologist in my town and I do not feel confident with his care; he isn't giving me straight answers and refuses to explain things clearly. If anyone out there can help, I'd appreciate it! Thanks, Tina. mickjordmoll@hotmail.com


Jon's April 30 reply to Pauline's April 30, 2002 - Hi Pauline, You seem to be on some really questionable drug choices. Have you been diagnosed with heart failure? You have the cause (chronic high blood pressure and heart attack) and the symptoms. It seems like a safe bet you have CHF from the edema and SOB. If so, you should be taken off the calcium channel blockers one and all, and be started on ACE inhibitors and a beta-blocker proven to work for heart failure patients. Inderal is not in that category. I'd get an official diagnosis to explain your symptoms and then research that illness and its treatments. Jon.


Tom R, April 30, 2002 - Hi, I am an registered nurse working for a company called Vasomedical. We are conducting a study designed for patients with heart failure on EECP. After conducting a successful saftey study with heart failure patients, we are now conducting a larger study to determine how effective EECP might be for heart failure patients. We are still enrolling patients for the study in many major metro areas including New York, San Diego, Miami, Cleveland, Houston, Chicago, Phoenix, and many other cities across the US.
     If you or someone you know is interested in participating and has an ejection fraction of 35% or less, please contact me at thomasriedman@yahoo.com. I have a lot of confidence that EECP can and will help many people with heart failure, just as it has patients with angina. Best regards, Tom Riedman. thomasriedman@yahoo.com


Derald G's April 30 reply to Jon's April 30, 2002 - Hi, I have fabricated a two-bit theory about foot pain, so don't take me seriously. Just as people who have amputations experience phantom pains, the reduced circulation and oxygen in the feet (farthest from the heart) trick the brain into thinking the feet and legs are severely bruised. Just like the body will generate as much heat as necessary to protect the brain, my guess is that it sacrifices oxygen for the brain too. My feet felt like I had karate kicked a brick wall. <g> deraldg@earthlink.net


Mike H's April 30 reply to Joyce's April 30, 2002 - Hi, I have not experienced any foot pain with CHF, but about 3 weeks ago started up with back pain. My back is fine all day and most of the night but around 4 to 5:00 AM I can't sleep due to the pain. I get up and within 10 minutes I feel normal for the rest of the day. I have tried different things, including pillows under my feet, between the knees, etc,..., but nothing seems to help at all. Has anyone else had this? skinsfanmh@yahoo.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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