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

Hal 6-2     can Coreg cause a lot of weight gain?
 
Betty L 6-2     minerals are important
 
Hal 6-2     water
 
Jon's 6-2 reply to Hal's 6-2     water
 
Jacky's 6-2 reply to Catherine's 5-31     high altitudes
 
Jack ? 6-2     bypass surgery and stent implants
 
Dale 6-2     thanks for replies, update
 
Katherine H's 6-2 reply to Peggy A's 5-31     changing health insurance
 
Marly's 6-2 reply to Catherine's 5-31     high altitudes
 
Peggy A's 6-3 reply to Katherine H's 6-2     changing jobs
 
Charlie's 6-3 reply Hal's 6-2     tracking true food intake
 
Cheryl's 6-4 reply to Mary Jo 5-30     meds help
 
Jason 6-4     I have some questions
 
Jon's 6-4 reply to Jason's 6-4     staying on meds & more
 
Hal's 6-4 reply to Jon's 6-2     Coreg and weight gain
 
Dale 6-4     do home water softeners affect sodium intake?
 
Lydia M 6-4     do others have this problem?
 
Loretta D's 6-4 reply to Bonnie's 5-27     sleep apnea and more
 
John 6-4     intro, frustrated with doctors
 
John 6-4     meds, weight changes, side effects
 
John 6-4     Social Security Disability question
 
Jon 6-4     no interest in chat room?
 
Paul D's 6-4 reply to Jason's 6-4     sodium limits, docs and guidelines
 
Tom S' 6-5 reply to John's 6-4     Social Security Disability
 
Clara D's 6-5 reply to Dale's 6-4     water and sodium
 
Pat Y 6-5     my cat has CHF too
 
Crystal S' 6-5 reply to John's 6-4     SSD experience and CHF doctors
 
Valerie R's 6-5 reply to Dale's 6-4     water and sodium
 
Joe S' 6-5 reply to John's 6-4     doctors
 
Betty's 6-5 reply to Jason's 6-4     sodium and docs
 
Joanne R's 6-5 reply to Jason's 6-4     sodium and docs
 
Margaret D's 6-6 reply to Pat Y's 6-5     pets and heart conditions
 
Jon 6-6     thanks to all for input
 
Kay 6-6     seek some positive news - I'm scared
 
Steve H 6-6     sodium, doctors, stopping meds
 
Jon's 6-6 reply to Steve H's 6-6     dietary sodium
 
Myrtle C 6-8     to John and Kay
 
Steve H's 6-8 reply to Jon's 6-6     cooking and diet experience
 
Natalia L 6-8     heart transplant and SSD experience
 
John H 6-8     seek advice on taking these supplements
 
Donna 6-8     will a stent cure me?
 
Jon's 6-8 reply to Donna's 6-8     curing heart failure
 
John H 6-8     is hawthorne berry safe for us to take?
 
Jack D's 6-8 reply to Jon's 6-6     why is Atkins high sodium?
 
Jon's 6-8 reply to Jack D's 6-8     Atkins and sodium
 
John H 6-8     is taking CoQ10 or taurine better?
 
Bernard Z 6-8     seek a-fib experiences
 
Pat Y's 6-8 reply to Kay's 6-6     information is critical and more
 
Jon 6-8     heart failure mortality statistics
 
Kay 6-8     seek low-carb, low-sodium recipes
 
John H 6-8     when will I be able to stop Lasix?
 
Sy 6-8     seek amiodarone experiences, info
 
Emily A 6-8     glad to find you
 
Kay 6-8     should I buy a stethescope?
 
Valerie R's 6-9 reply to Sy's 6-8     my amiodarone experience so far
 
Donna's 6-9 reply to Jon's 6-8     that makes it clearer
 
Natalia's 6-9 reply to Kay's 6-8     stethescopes and food
 
Jack D's 6-9 reply to John H's 6-8     CoQ10 and taurine
 
Mike's 6-9 reply to Bernard Z's 6-8     a-fib experience
 
Tom S' 6-9 reply to John H's 6-8     gettting off Lasix
 
Margaret D's 6-9 reply to Bernard Z's 6-8     a-fib and heart rate
 
Kay R's 6-9 reply to Jon's 6-8     doctor's instructions
 
Kay R 6-9     what about foot pain?
 
Jon's 6-9 reply to Kay R's 6-9     foot pain options
 
Patrick 6-9     aspirin questions
 
Jon's 6-9 reply to Patrick's 6-9     aspirin
 
Jon's 6-9 reply to Kay R's 6-8     stethescope
 
Pat H 6-9     is this dose too high? anyone?
 
Betty L 6-9     water softeners and sodium experience
 
Jack D's 6-9 reply to John H's 6-8     supplements
 
Shery C's 6-9 reply to Kay's 6-9     losing or maintaining weight
 
Betty L 6-9     online low sodium resource
 
Jim 6-10     need help for itching problem
 
Kelly 6-10     need opinions or suggestions
 
Don's 6-10 reply to Natalia L's 6-8     heart transplant experience
 
Jon 6-10     chat room
 
Paul D's 6-11 reply to Jim's 6-10     laundry detergent a possibility
 
Jacky 6-11     meds make me feel rotten - a question
 
Jon's 6-11 reply to Jacky's 6-11     meds and how we feel
 
Kay R 6-11     what does it take to diagnose CHF?
 
Jack L 6-11     how can I afford meds right now?
 
Shery C's 6-11 reply to Jim's 6-10     itching possibilities
 
Tom S' 6-11 reply to Jim's 6-10     itching possibilities
 
Jacky's 6-11 reply to Jon's 6-11     thanks for the reminder
 
Ron 6-11     seek pacemaker experiences
 
Robert S 6-11     seek gout experiences
 
Kathy 6-11     is it okay to not take digoxin?
 
Joe S' 6-12 reply to Jackie's 6-11     staying on low sodium diet
 
Emily A 6-12     sodium intake and heart rate questions
 
Athina 6-12     natural progesterone
 
Joanne R's 6-12 reply to Robert S' 6-11     allopurinol works for me
 
Joanne R's 6-12 reply to Jim's 6-10     sensitivities
 
Katherine H's 6-12 reply to Ron's 6-11     pacemaker experiences and resources
 
David W's 6-12 reply to Robert S' 6-11     gout experience and an update
 
Lorraine's 6-12 reply to Ron's 6-11     pacemaker experiences
 
Shelley B 6-12     can I get pregnant?
 
Jon's 6-12 reply to Shelley B's 6-12     CHF and pregnancy
 
Chuck H's 6-13 reply to Emily A's 6-12     sodium intake and heart rate
 
Michael 6-13     seek travel experiences
 
Cat 6-14     magnesium and diuretic questions
 
Deirdre 6-14     does it take longer to get over virus?
 
Cathy 6-14     stopping Coreg questions
 
Jon's 6-14 reply to Cathy's 6-14     stopping Coreg & thanks to contributors
 


Hal, June 2, 2003 - Hey Gang, I was wondering if any of you folks have had a weight gain attributed to Coreg? I was 270 lbs at diagnosis. After one month on Lasix I was 215. Wild, huh? My best weight is 180 on a six foot frame. Anyhow, I remained at 215 for 15 months, at which time it steadily creeped up to 250 lbs over 12 months. Everything is the same,including diet, exercise and fluid intake. The only thing different is Coreg. I asked my new doc if this huge belly was all water weight and maybe we could blast it off with more Lasix like before. He said two words: Eat less.
     Starvation has worked with me in the past but can't be too good for a CHFer, can it? When your annual income is $7,000, eating three meals a day is not possible. My family has been feeding me. Would eating every other day be an option? I'm really afraid that it's going to continue till I'm back in the ER again closing in on 300 lbs. What can possibly cause large weight gain when you're eating right and exercising daily? I'm sick of looking pregnant - it's not s good look for a 54 year old man. uncahal@webtv.net
 
Jon's note: Is physical activity the same? This is completely different from exercise and is what burns the most calories. Also, do you keep a written log of diet? I discovered much to my surprise that writing down every bite showed me to be eating a lot more than I thought I was eating. I would not eat every other day but some people can safely and effectively skip one meal a day; others can't


Betty L, June 2, 2003 - Hi Jon, I wanted to thank you for the hormone replacement therapy connection and also to get your input on magnesium and zinc. I had similiar symptoms as the lady who has leg and arm aches, so I went to a nutritionist and had blood work done.They found that I had no Zinc in my body. I started taking some plain old cheap zinc over the counter and it worked wonders for my leg cramps. Then my cardiologist put me on Slo-Mag (time release magnesium) and it did wonders for the chest pains I was getting.
     Apparently the heart needs magnesium. Also, Coreg and Prinivil deplete the magnesium in your body as the zinc does also. That was a surprise to me. This cardiologist at Kaiser even does intravenous magnesium. I am wondering if people out there are aware of the importance of these simple minerals. Many doctors are not aware of this. Just a thought for the day. I hope you all having a beautiful sunny day wherever you are. bettylaird@earthlink.net
 
Jon's note: Read my articles on minerals on the minerals page


Hal, June 2, 2003 - Hi Jon, As near as I can figure we're talking weight here. My heart pumps blood, not water. If I drank zero water one day and put 3 one-pound rocks in my pockets, wouldn't that be the same as drinking 3 pints of water? I'm 70 lbs overweight - won't that kill me quicker than daily water intake? uncahal@webtv.net


Jon's June 2 reply to Hal's June 2, 2003 - Hi Hal, Your body is mostly water - including your blood. How does food and fluid intake through our mouth get turned into the liquid components of blood and other bodily fluid - which are all largely water? How does fluid in our blood stream get into our lungs when we are in heart failure? How does excess fluid get into our abdomen and stay there, instead of traveling right on through?
     Bodily fluids are not restrained by concrete barriers to just one avenue of travel inside your body. Blood vessels and many cells are in effect semi-transparent to water. Fluids can move from one type of area to another faster than you would believe. How do we sweat? How do clouds form on our breath on cold days? About 2/3 of the fluid in your body is inside cells and the rest is "loose" or extracellular. Even our skeletal muscle is 70% water by weight.
     We must educate ourselves and base decisions on that knowledge - not on what we assume to be true because it "makes sense" to us. The human body is incredibly complex and does amazingly complex things. ;-)
     Being 70 lbs overweight is indeed hurting you badly. Like I said before, drinking too much fluid may or may not be hurting you but it can hurt some people by literally increasing the amount of work their hearts must do. Jon.


Jacky's June 2 reply to Catherine's May 31, 2003 - Hi, I have idiopathic cardiomyopathy with an ejection fraction of 35%. I am taking Coreg, Diovan, Lipitor, Lasix, aspirin, Synthroid, and Fosomax. I have just returned from a trip to Yellowstone, altitude 9,000 to 10,000 feet. I had no problems at all. It was much better than my visit last year when I was not on the same medications. Then I had problems with weak legs and some shortness of breath and extreme fatigue. I think it depends on how well compensated you are! Jackymwb@aol.com


Jack ?, June 2, 2003 - Hi, I'd like to speak with patients who are in their mid-forties or close to it, who had bypass and stent implantat. I sometimes think that hospitals, stent manufaturers, and pharmacists are just trying to sell a product or procedure for the money, and they may keep the risks and side effects in small print. jackven954@hotmail.com


Dale, June 2, 2003 - Hi, Thanks to everyone for their responses. They were very helpful. My dad is going to stay vigilant with his salt and water intake finally, so I think that will help. He started taking an ACE inhibitor yesterday and he felt better today. The doctors took him off his beta-blocker and that also seemed to make him feel a little better. I think the thing that is the most helpful is the prayer support. Thanks again to everyone and God bless. Dale. HomeCapitaldale@hotmail.com


Katherine H's June 2 reply to Peggy A's May 31, 2003 - Hi Peggy and Jon, I just checked with our Human Resources staff and they say that as long as you provide proof of credible coverage from your current insurance company (a form letter you request that they send to you), you can switch employers and be covered by a new employer's insurance company even with pre-existing conditions as long as there is no more than 61 days gap in between the change. This is part of the HIPPA law. I hope that helps. Katherine. kholian@msn.com


Marly's June 2 reply to Catherine's May 31, 2003 - Hi Catherine, I have CHF with an EF of 15 to 20%. I traveled last November to Santa Fe and Socorooo in New Mexico and went up the cable car in Albuquerque. Afterward, I traveled to Mexico City. I experienced SOB at these altitudes. You should be careful because of the thin air in higher altitudes, but I guess this is an individual response. mcardenas@pacific.net.ph


Peggy A's June 3 reply to Katherine H's June 2, 2003 - Hi, Thanks for the information. It's good to know this if I find that I absolutely must change jobs. Now my other concern is, if I were to do this, how do I handle any questions the prospective employer might ask about my health or if they want me to have a physical or something before they decide to hire me? I'm going to try not to change jobs because I'm happy here for the most part and the benefits are oustanding - much better than in the private sector to the best of my knowledge. pegalford@its.state.ms.us


Charlie's June 3 reply to Hal's June 2, 2003 - Hi Hal, I couldn't agree more with Jon. My wife wanted to buy one of these NutriCounters you see advertised, so I mosied over to their web site and was pretty impressed so I got one of them for each of us. Like Jon says, you start seeing stuff creeping in. The NC didn't keep track of what I ate, but it kept track of the nutrition information and that's the real rubber on the road. Keeping a food diary (faithfully!) is also a great way of seeing what you are actually consuming, as opposed to what you think you are consuming. cekestner@bigfoot.com


Cheryl's June 4 reply to Mary Jo's May 30, 2003 - Hi ladies, I lurk here a lot but haven't posted in a long time. However, I felt the need to ask if either of you go to a local support group? I go to one at a local hospital and we have a social worker that helps the ones that have a problem affording their meds, get them at a reduced price or even for free. This may be something that you can check into at your local hospitals. I hope that this is a help to you and Peggy A. Cheryl. healedhart@yahoo.com


Jason, June 4, 2003 - Hi folks, I am 26 years old and was diagnosed with IDCM and CHF on April 1. My doctors never did a true EF test but they said it was between 34 and 38%. I am currently on 25mg Coreg twice a day, 5mg Altace twice a day, 0.4mg digoxin, 25mg Aldactone, 40mg Lasix twice a day and 25mg potassium twice a day.
     It is now 3 months later and I am now able to jog one mile in 12 minutes and 2 miles in 26 minutes. I feel like I can and I have been able to do anything I wanted to. Am I just kidding myself? My doctor has scheduled another echo for August to see what my heart is doing.
     I have a few questions. Both of my cardiologists recommended a 4,000 mg sodium diet. I have asked them both numerous times and they stated 4,000 mg is what they want me limited to. Reading the posts, my diet is really high, isn't it? Secondly, my recent holter test showed possible Non-Sustained Ventricular Tachycardia. I am supposed to meet with an electrocardiologist later this month. Do any of you have any suggestions?
     Lastly, my doctor said he was probably going to take me off meds in October or so. I have read a lots of posts here by people saying that I should not be off them. Should I fight my doctors to stay on the meds? recoiljpr@yahoo.com


Jon's June 4 reply to Jason's June 4, 2003 - Hi, Anytime your treatment varies from the guidelines, you should demand a very strong reason why. Guidelines say to stay on ACE inhibitors and beta-blockers for life after being on them for heart failure. Are you kidding yourself? I don't know. What I do know is that CHF hits everyone with a different course of disease in some respect. I say do what you are able to do but don't push it just to prove to yourself that you can. ;-) Jon.


Hal's June 4 reply to Jon's June 2, 2003 - Hi Jon, Not to sound smartaleck but was that a yes or a no on the question of Coreg causing weight gain? The detailed log is a good suggestion and I will begin one soon. Pretty much everything in my life is upside down and disrupted now anyway so switching to sweat clothes instead of real clothes won't be too bad. At the rate I'm gaining I'll be back in the ER by Christmas and we'll see what those folks say. Be well. uncahal@webtv.net
 
Jon's note: Possible but unlikely. Reduced activity and overeating without realizing it are the usual culprits in CHFers. Switching to a lower carb diet will reduce Coreg's impact on blood sugar.


Dale, June 4, 2003 - Hi, Water softeners used for homes take salt to soften the water. If you drink the water, does that affect your salt intake? If you shower in the water, does that affect your salt intake? We can't seem to find anyone with info on this subject I was hoping someone had come across this situation in their life. Thanks and God bless. Dale. Homecapitaldale@hotmail.com


Lydia M, June 4, 2003 - Hello all you great people, I first want to thank those of you who have returned some good imput to me about my problems. I am doing better if I rest a lot. I guess the increasing of my Coreg is kicking my rear! I want to hang on and get to the other side of it, because it is such a great drug for CHF. Also, I am on medical and am having a really bad time finding doctors for other ailments besides CHF. I have no primary care physician, no eye doctor, and whatever other kind of doctor a person might need. It is very frustrating. Is anyone in the same boat? God bless to all, Lydia. Flanders66288@cs.com


Loretta D's June 4 reply to Bonnie's May 27, 2003 - Hi Bonnie, I'm sorry to hear of your health problems at such a young age. I have problems sleeping and with memory. In my case, depression, stress, and sleep apnea seem to be problems, according to my doctors. Besides all the heart-related medicine, I also take medicine for anxiety and depression. Have you been tested for sleep apnea? lorettad7@comcast.net


John, June 4, 2003 - Hi, I just wanted to join the forum so I can get more info and feedback on what I'm going through. I'm a 39-year-old retired pro surfer in Florida, just told 3 months ago that I have congestive heart failure from a virus. At first they said heart transplant, then I reacted very well to Coreg and Lasix, so in 6 weeks I went from an EF of 10 to 15%, to 30 to 35%, but after reading some info on the web site here, numbers don't mean too much.
     They're adjusting my amount of Coreg and Lasix. I was feeling really bad the more they upped it, so they have just lowered it and I feel much better. Man, these doctors don't tell ya much! All my info is coming from web sites like this one, not from the doctors. What is up with that? They get paid enough to tell us, so why don't they? If I don't ask, they don't tell. Nice, huh? Thanks, John. air360@cfl.rr.com


John, June 4, 2003 - Hi, I see some people here have gained weight since starting Coreg. I'm 5'8" with a normal weight of 150 lbs. Since my CHF 3 months ago, I'm down to 135 lbs. The more the doc raises my Coreg dose, the less hungry I am, so he lowered it. All the other side effects were getting to me too, like loss of appetite, fatigue, cramps, extreme nervousness and crankiness. A search for Coreg's side effects is scary stuff, Lasix too. air360@cfl.rr.com
 
Jon's note: That's true for all drugs, even aspirin or acetaminophen


John, June 4, 2003 - Hi, Can you guys tell me if you recommend getting a lawyer to get my SSD? I applied 3 months ago and the disability lady said it could take up to 8 months or a year before I'd see a check. She doesn't think I will qualify either but it has to go before some board first. Any suggestions? air360@cfl.rr.com


Jon, June 4, 2003 - Hi everyone, I am just checking: Is there little or no interest in a decent quality (not a freebie with advertising) chat room with chats that include me? Not an ego question <g> - just planning how to spend my web site money. Jon.


Paul D's June 4 reply to Jason's June 4, 2003 - Hi Jason, Both the US government and the American Heart Association recommend a sodium intake of 2,400mg a day for healthy people. I'm astonished that there are physicians out there suggesting a limit of 4,000mg for a CHF patient! If I heard 4000mg from my doctor, I'd be out the door and in the office of a new doc pretty quickly.
     At the very least, as Jon says, I think you should ask and get a clear explanation from your docs about why what they are saying varies from accepted guidelines. That's true even if you are feeling fine right now. therealpauld@netscape.net


Tom S' June 5 reply to John's June 4, 2003 - Hi, I hardly think 3 months is a long time to wait on a Social Security Disability decision. I am sure if you polled this group a good many would say hire an attorney while others would say wait out SSD and get an attorney if they reject your claim. I personally went the no-attorney route and was very satisfied overall with the treatment and results I received from SSA. I have been through 3 reviews and am still qualified (if that is the word) for disability. I can't remember how long it initially took but I remember it is a 6-month waiting period. bigheart@muchomail.com


Clara D's June 5 reply to Dale's June 4, 2003 - Hi Dale, When my doctor told me I should restrict the sodium in my diet I bought a book called "Get The Salt Out" by Ann Louise Gittleman. Here are some quotes from the book:
     "If you are on a sodium-restricted diet and your tap water's sodium content is more than 80 parts per million, the American Heart Association recommends that you switch to sodium-free bottled water ... Find out the sodium content of your tap water through your local water department or health department. Your drinking water sometimes can sabotage a healthful, low-sodium diet by contributing as much as 3,750 milligrams of sodium in 10 eight-ounce glasses! People who live in snowy areas where road salt is used or those who live in coastal communities frequently have saltier water than individuals who live in other areas ... Switch to bathing in magnetically conditioned water instead of salt-soften water ... Nutritionist Martin Fox has noted that an adult who takes a fifteen-minute bath typically absorbs almost twice as much water - and the substances dissolved in it - as he or she receives from a day's supply of drinking water."
I hope this helps. Clara. ncdossetts@aol.com


Pat Y, June 5, 2003 - Hi, Yesterday I noticed my 15 year old cat was having difficulty breathing. My first thought was cardiomyopathy and CHF so I rushed her to the vet. She probably has cardiomyopathy and may have the same cardiomyopathy that I have. She is scheduled for an echo next Thursday. Strange to have the same diagnosis. Sorry Jon, but I prefer cats over dogs. I have had both during my life time. PTYoumans@aol.com
 
Jon's note: As we both shake our heads and say, "There's no accounting for taste." <g> I sympathize - my Rottie who recently died had CHF also


Crystal S' June 5 reply to John's June 4, 2003 - Hi John, Regarding hiring an attorney to represent you, I called a couple of attorneys after I was denied the first time and as soon as they heard I had only been denied once they didn't even want to talk to me. They said they don't get involved until you've been denied at least two times.
     I recommend calling your Congressperson and your federal Senators. My Congressman has a woman who is helping me out. They had me sign a release form so that my congressman can check on my case. I'm hoping that they will be able to help move things along.
     If your doctors aren't telling you everything you want to know, then fire them and hire a CHF specialist! Jon recommends this and I agree agree. My doctor did nothing for me and I felt totally uncomfortable asking questions - she rushed in and out so fast it made my head spin!
     I found a specialist at the Cleveland Clinic and he is wonderful. Today he actually called me with the results of my metabolic stress test himself - not a nurse. He even asked about my children. He is such a wonderful doctor. Search until you find one, they're out there. schramuno@prodigy.net


Valerie R's June 5 reply to Dale's June 4, 2003 - Hi Dale, For no reason at all, I was thinking of your question last night. As a kid, my parents had a water softener and I believe it was attached to the hot water heater. I have always been told not to use hot water for drinking and if a recipe calls for hot water to heat it on the stove, so I doubt you are drinking salt. As to the shower and this is my opinion only, I doubt there will be sodium intake unless you drink it. Valerie R. vgrogers@aol.com


Joe S' June 5 reply to John's June 4, 2003 - Hi John, In my humble opinion you have every right to be angry. The doctors I have seen in Nevada treat patients as imbeciles who need to know nothing. About 2 months ago I had some bad stomachaches and couldn't sleep plus I gained about 20 lbs with swollen ankles. My cardiologist told me to get Viagra and have a good time with my wife. The emergency room technician told me to increase my furosemide to 80 mg, to no avail. My PCP gave me 2.5 mg Zaroxolyn. It's been over 6 weeks and I've lost over 25 lbs and he finally told me I might want to stop for awhile. Then they told me to take Remeron as an antidepressant. Hey, I wasn't depressed, just angry. Joe S. jes@gbis.com


Betty L's June 5 reply to Jason's June 4, 2003 - Hi Jason, I agree with Paul D's answer! 4000mg of sodium is unheard of. A normal healthy person should only eat 2400mg and that is too much for a CHF patient. I would definitely get a second opinion.
     I went to the head of the local Heart Association doctor at St. Joseph's hospital. He said that Kaiser was doing everything exactly right. I am on Coreg, Zestril, and Lasix. That's it and I have come back from 10% toa 50% EF or so. The echo is not exact measuring EF so I had to ask for a MUGA. I try to keep my sodium intake below 1000mg and I think that ideally 500mg a day is a really good thing. Some people are salt sensitive and I'm beginning to believe that's part of my problem. I would like Jon's input on that and if he's read about this problem.
     Jason, don't be afraid to ask for a second opinion within your healthcare network - you are allowed. I asked who was head of the CHF programs for my hospital and that's who I requested.
     My doctors have mentioned taking me off my meds, but I've been on them for 4 years. They changed their mind when they saw the high heart rate that I was experiencing. We have to keep our heart rate low or at least within fairly normal range. They do want me off Lasix - I'm the lazy one not wanting to give up an easy out. I'd really have to watch my sodium intake even more if I quit Lasix. Also having a beer or glass of wine would not be as easy anymore. So there's lots of things to consider. I hope you keep improving at the same rate. That is really good. Take care. Betty. bettylaird@earthlink.net


Joanne R's June 5 reply to Jason's June 4, 2003 - Hi Jason, I'm concerned about your medical supervision. Your doctors' recommendations are so far off the tested treatment norms that I have to wonder if they are CHF specialists. This ailment is definitely a specialized field and you deserve the most knowledgeable care you can get. Forgive me for sounding like a Jewish mother but 4000mg of sodium is more than a normally healthy adult should eat. Unfortunately, it is not more than the average adult consumes! Be well and God bless. Joanne. muddyrds@hotmail.com


Margaret D's June 6 reply to Pat Y's June 5, 2003 - Hi Pat, I'm sorry about your cat. Maybe you can share your CHF meds with it, but I can top that - my sister was talking to an electrophysiologist friend of hers who works at a children's medical center in Ohio. They do ablations on dogs who have SVT and go into failure! Can you imagine? Think of the costs! They have dogs that are brought in from all over the world. mdavis10@tampabay.rr.com


Jon, June 6, 2003 - Hi everyone, Thanks for your input on a possible chat room. I'm just too tired to reply to all the messages. Maybe I can rest up this weekend while the rest of my family is out of town and it's just me and Miss Dawg. Jon.


Kay, June 6, 2003 - Hi, Well, here's another newbie to add to the list. I'm 61 years old. I was just diagnosed a couple of days ago and I'm frankly scared! Do all or most CHF patients have pulmonary edema? My doctor says I'm literally drowning and I'm afraid of having cardiac arrest. Can y'all tell me about life expectancy with CHF, and anything else you think I should be aware of. Please don't feel you should just send the negative. I would love to hear some positive news too. Help, please! Thanks, Kay. kayrockett@webtv.net


Steve H, June 6, 2003 - Hi, I see a lot of people here asking about a low sodium cook book. I use my old cook book and just don't add the salt recommended in the recipe. If you cook or have cooked most of your own foods you can easily watch the sodium. I keep my sodium intake to less than one gram a day. It is even easier now because to help my wife out I am on the Atkins diet. I did it to humor her and was surprised when I lost 12 lbs and feel a lot better. I wish I had followed this diet sooner.
     As far as getting off your medicine, please be careful. I went to my doctor a few months ago and looked great. My EF was good and my heart had shrunk back to almost normal size. My doctor, with my understanding and consent, took me off my amiodarone. Six weeks later I got dizzy and checked my heart with my stethoscope. I was back in a-fib. I spent the next week in the hospital getting my amiodarone level back up. I was lucky and I cardioverted after 5 days.
     My experience with Social Security has been good. I think more than anything, it depends on your local office. I was approved the first time and only took 3 months. I had no attorney. My daughter's application to receive benefits because I am on SSD and she is a minor, took 9 months. She lives in another state and their office seems to not be as good as our local one. The best thing I can say is to be sure to give them every bit of paperwork you can to back up your claim.
     I am very lucky that I have a supportive wife and a great cardiac unit in Atlanta. One of the things that keeps me going is meditation and Tao. I have learned to enjoy the good days and not fret about the bad days. Life is going to be short enough as it is. There is no surgery that will help me. I am lucky to have one of the best heart doctors in the area from the start of my illness.
     Well, I will get off the soapbox and hope everyone has a great day. Steve H. aholland@alltel.net


Jon's June 6 reply to Steve H's June 6, 2003 - Hi Steve, I am glad you are doing okay - welcome to CHFpatients.com. However, to avoid confusion over low sodium cooking, I must say that it is not that easy - you have to use no salt added canned goods, dry beans, homemade chicken broth, make low sodium bread and many condiments homemade, avoid most cheeses and cured meats and store sausages, and make many other changes to keep sodium down in those old recipes. That's why I have a whole section on low sodium cooking. I question whether you are accurately counting your sodium intake in light of your reported cooking style.
     The Atkins' Diet is inherently very high in sodium and is very difficult to do properly as low sodium; I have lost 28-1/2 pounds on it so I know of what I speak. Anyone with chronic heart failure who tries Atkins should refer to the link I just gave and should be prepared to struggle with sodium content. Jon.


Myrtle C, June 8, 2003 - Hi John and Kay, I have sent each of you an e-mail. This is the best place to get info. You both need to read The Manual and all the information here, and then reread it. It will take awhile to get enough info to ask your doctor the questions that need answering. Jon's help comes from much research, good doctors, hard work putting this web site together, and his faith in our Lord. God's peace and love to you both, Myrtle C. omie@axs4u.net


Steve H's June 8 reply to Jon's June 6, 2003 - Hi Jon, I didn't say it was easy and my cookbooks may be a little older than yours. They don't include many store bought items. They have a lot of recipes for items that are from scratch. I have been working with the Atkin's diet and really watch what I eat as far as sodium intake. It takes work but can be done. Thanks for the board. Steve. aholland@alltel.net


Natalia L, June 8, 2003 - Hi everyone, I posted a couple of months ago when I was on the waiting list for a new heart. I had a very successful heart transplant at Duke University Medical Center 3/30/2003, and spent only 9 days in the hospital afterward before discharge. After 5 months of living in a hospital, going back to the world was like a dream. I read the posts on the forum yesterday and felt like replying to a few messages, but one turned into several so I just decided to type a general greeting and whatever thoughts I came up with as I read.
     My SSDI claim is still being processed. I'm a naturalized US citizen and SSA nearly obligated me to return to my country just to certify the authenticity of my birth certificate. I've resolved this issue, but frankly I'm terrified that I'll be denied despite all the paperwork I've already sent in.
     My transplant was not covered by Medicare, so my meds won't be either if and when I get Medicare. Heart transplant by itself is considered a disability for only one year following surgery by the SSA. I currently have my old job's insurance because I signed on for COBRA. I probably will work again in a couple of years but meanwhile, I'd like to think that the money I earned can help me live when I am not able to work. One reason transplant patients may hesitate about work is the anti-rejection drugs we take. They lower our body's immune system so illness and infection are real threats. It's scary to be vulnerable. Transplant is definitely a second chance at life, but with it comes a price. Have a great day. Natalia L. Natalialama@cs.com


John H, June 8, 2003 - Hi, I just bought $100 worth of supplements for my CHF. My doctor has approved them. Can I - since there are about 10 to 13 pills to take - crush them in a pill crusher and put them into green tea or a protein shake and drink them? Is it okay to mix them like that? I'd take some at breakfast, then some at lunch, then some at dinner. If you need me to list the names and at which meal, I can. Thank you. John H. air360@cfl.rr.com


Donna, June 8, 2003 - Hi, I am scheduled to have a cardiac cath done on the 18th of this month. I had a heart attack in February of 1999 and went into heart failure. For the last 4 years I have just been on medication. They wanted to do a cath back then but I also suffered 2 strokes, one a brain stem and then a brain bleed into the stroke so they would not do a cath then.
     My cardiologist now says it is really a miracle that I have done as well as I have over the last 4 years. My EF back then was 35%. I have done a lot of reading on stents and cardiac caths but can't find out if correcting a blocked artery(s) will make my heart work normally and then if I would no longer have heart failure?
     I have read The Manual and it says once you have heart failure there is no cure but everything I read about blocked arteries says if a stent is put in, the heart will function normally. A friend of mine had it done last month and she asked her doctor why he didn't give her some nitro tablets and he told her she was fixed and didn't need them. He said that if she got chest pain it was because something else was wrong. Sure would like some help understanding this. Thanks, Donna. gramme@cfl.rr.com


Jon's June 8 reply to Donna's June 8, 2003 - Hi Donna, I address this one a lot so it seems simple to me but apparently I don't do a good job explaining. ;-) If you suffered no damage to your heart muscle, arteries and other blood vessels, etc, then it is possible you will regain full heart function. In your case, I am sorry, but it is unlikely. You have had a heart attack and stroke; blood flow to your heart was not restored for years. There is almost certainly permanent damage.
     On top of that, heart failure is not just a matter of heart function. Your neurohormonal system goes crazy, muscle fiber types change, the endothelium no longer works right, your heart's energy reserve is reduced, bodily gas transfer changes for the worse, and more. That's why restoring blood flow to the heart does not always fully correct heart function - and restoring heart function does not always fully restore you to pre-CHF physical functioning. This is one reason why ACE inhibitors and beta-blockers are recommended for life in the CHF treatment guidelines even if full heart function is restored.
     Please never base your information on just one other person's experience. Each person's disease course is different in some respect. The doctor you mention is in my non-doctorly opinion - full of it. He's like the doctors who pull CHFers off their meds saying they are cured, then the CHFer a year later is in worse shape than ever due to relapse. His kind of thinking is outdated and usually based on lack of - or shallow - clinical experience with a large number of CHFers. For instance, some CHFers who never had blocked arteries at all get angina that is relieved by nitro!
     I suggest talking to your heart failure specialist about all this at length because only you and he fully understand your personal history and situation, so only you two can come to a realistic set of expectations in your case. Jon.


John H, June 8, 2003 - Hi, Is hawthorne berry safe to take for CHF patients? air360@cfl.rr.com


Jack D's June 8 reply to Jon's June 6, 2003 - Yo Jon, I want to know why the Atkins diet is so high in sodium? What makes it high in sodium? If you avoid the high sodium foods like bacon, sausage and cheese, it's very low in sodium. I've never had much of a problem doing low sodium because I don't use things that come in cans or boxes because they are loaded with sodium and sugar.
     If you eat real food instead of processed low-fat junk you avoid lots of starch, sugar and salt. If you use fresh meat and fish you don't get stuff that is processed in salt. maddjak@hotmail.com


Jon's June 8 reply to Jack D's June 8, 2003 - Howdy-doo Jack, That's because you're not normal! <g> Your own description of how you eat shows that. Most people will not avoid the cheese, the cured meats, or the commercially available low-carb products (which are almost all high sodium, including the Atkins product line).
     Also, my rather large experience talking to people online about the low-carb and low-sodium diet plans shows me that most people will not fully modify recipes from books and web sites when they should to meet their dietary requirements. I know that you know this, but thanks for prodding me into making it more clear here.
     To all who don't read well, I have never said Atkins could not be done low sodium - read more carefully. I said it is very hard to do that way and for most people - including me - it is indeed. For example, it is difficult to eat tasty food at 60% fat in your diet without cheese, cream cheese, etc. I don't like cream well enough to just drink it! Many people turn to eating too much protein on Atkins and think they are doing it right. Jon.


John H, June 8, 2003 - Hi, Has anyone replaced CoQ10 with taurine? Is it helping you better than CoQ10 did? air360@cfl.rr.com


Bernard Z, June 8, 2003 - Hi, Has anyone heard of fibrillation with a normal pulse rate? My regular 6-month checkup and EKG this week showed me to be in fibrillation again. I knew my heart beat was a little irregular but I thought nothing of it since my pulse was in the 80 to 90 range and I was feeling better than I had in many months.
     The doctors said that Toprol-XL and diltiazem were controlling my heart rate but not the irregularity. I have a diastolic malfunction caused by hypertrophic cardiomyopothy. They put me on Coumadin to dissolve any possible blood clots before attempting a conversion in about 3 weeks. Has anyone had a similar experience? Bernard. bernardz@cox-internet.com


Pat Y's June 8 reply to Kay's June 6, 2003 - Hi, I fumbled around for several years before I found this web site - then I spent hours going through much of the information. This information is invaluable. Start with The Manual. You will feel much better after gaining information.
     I was terrified I'd never see my first grandchild enter kindergarten. He is now entering third grade. This site is largely responsible for reduction of my fears. I still go back every few months to review various parts of the web site. Jon has really been great for developing this web site and to continually update it. It is the only place I found current information about CHF.
     If you still have pulmonary edema, I would change doctors immediately. I was drowning when I went to the emergency room December 25, 1994. However, I could breathe much easier within a few hours after receiving IV Lasix. With proper medication and follow-up we are living many years with an acceptable quality of life. PTYoumans@aol.com


Jon, June 8, 2003 - Hi everyone, Pat reminded me of a tidbit I want to pass on. A recent study report shows that mortality is 50% lower for CHFers generally now than it was when that old 5-year statistic was reported. So take heart! (Sorry - I couldn't resist) Thanks to Cindy for the report. Jon.


Kay, June 8, 2003 - Hi all, I'm having a problem finding something to eat that is low in sodium, low in carbs, and low in calories. I am absolutely starving to death! Please help. kayrockett@webtv.net
 
Jon's note: If you're eating low-carb, why count calories?


John H, June 8, 2003 - Hi, From what I have been reading online, there is a fine line between too much potassium and magnesium or too little, that can lead to life and death results. I'm wondering at what point will my doctor take me off Lasix? I know how and what diuretics do. air360@cfl.rr.com


Sy, June 8, 2003 - Hi, I am a CHF patient and have arrhythmias. I am 65 years old and have an ICD. Three days ago I fainted but thanks to the device I was shocked back to normal. The doctor prescribed amiodarone. How do most patients react to the inital large doses? How is this drug ranked? Thanks, Sy. sysy@earthlink.net


Emily A, June 8, 2003 - Hi, I was just diagnosed and so far this is the first site that has provided some real answers for me. It's nice to know I'm not alone. I'm 32 and have LBBB, cardiomyopathy, hypertension, and now CHF. I collapsed at work last week and that's how I found out about the CHF. I'm on Coreg, furosemide, enalapril, aspirin, and norvasc. I've been so tired this week. I had a double cardiac cath on Tuesday. It seems that sodium is lurking everywhere - major changes to make. Pretty daunting stuff.
     I'm glad I found you. emilyadams@sbcglobal.net


Kay, June 8, 2003 - Hi all, Thank you so much for all your replies and great advice! I have another question for you - and I just have to tell you this - I can't remember what my question was, but I'm going to wait until it comes to me again. <g>
     Okay, 2 minutes later, is it highly advisable to get a stethoscope? Several of you have mentioned using one. My webtv prevents me reading Jon's other pages. What does the steth tell you? Where can they be bought? Thanks again. kayrockett@webtv.net


Valerie R's June 9 reply to Sy's June 8, 2003 - Hi, I was put on that medicine around May 9th, while I was in the hospital. When I left, I was dropped to 400mg a day. I believe I will be dropped to 200mg when I see my doctor in 2 weeks. I also have an ICD and I have developed a-fib as well as the v-tach I had the ICD for. I haven't had any problems with the medicine, except when I read all the cautions on the paper that came with it! Valerie. vgrogers@aol.com


Donna's June 9 reply to Jon's June 8, 2003 - Hi Jon, I can't thank you enough for your wonderful explaination. It is clearer to me now. Yes, I had heart damage and my friend never had a heart attack. I was getting my information confused! We sure can't fix what was destroyed. Thanks again for all you do for this site, your candid and honest information is really what we all want. God bless you and keep you well. I am going to do the cath and hope if there is any other problem, that it can be fixed so I don't get worse. Donna. gramme@cfl.rr.com


Natalia's June 9 reply to Kay's June 8, 2003 - Hi, My experience with CHF is that my heart used to beat very strangely. Instead of boom boom - 2 beats like normal - mine beat 3 times like boom boom boom really fast and then would rest. My doctor showed me with his stethoscope. Why you might benefit from having one is probably because it would let you keep a record of the beat on a daily basis, like following the progress of a mole on your skin, you know? Did it beat the same for a month? When did it change and how? This could indicate a worsening or improvement in your condition.
     Regarding what can you eat that's low-sodium, low-carb, low-calorie, I had to laugh - water perhaps? Try diet bread that's also low in sodium, or low-sodium tuna fish in water. Bumblebee brand's is 60 calorie per serving (2.5 servings in a can) with 100mg sodium, and like nothing in carbs. Mix it with fat-free, low-sodium mayonnaise and on your low salt bread you have a sandwich worth biting into. Natalia. natalialama@cs.com


Jack D's June 9 reply to John H's June 8, 2003 - Hi, You can't replace CoQ10 with taurine. Coq10 is an enzyme produced by the human body to assist in the release and utilization of energy at the cellular level, working within the mitochondria so your muscles will be able to function.
     Taurine is a non-essential sulfur-containing amino acid that functions with glycine and gamma-aminobutyric acid as a neuroinhibitory transmitter. While taurine does not have a genetic codon and is not incorporated into proteins and enzymes, it does play an important role in bile acid metabolism. Taurine is incorporated into one of the most abundant bile acids - chenodeoxychloic acid - where it serves to emulsify dietary lipids in the intestine, promoting digestion. Taurine also helps regulate the heart beat, maintain cell membrane stability, and prevent brain cell overactivity.
     So you can see that they have nothing to do with each other. Neither of them performs the same function but they are very useful combined. Stop talking to people in the vitamin store! maddjak@hotmail.com


Mike's June 9 reply to Bernard Z's June 8, 2003 - Hi, I have a normal heart rate of 72 beats per minute and have been in chronic a-fib for over 3 years. Due to the nature of my disease, conversion is not an option. I have been on Coumadin since my diagnosis and will be on it for life. On the bright side there are no studies that suggest people live less long because of a-fib. It seems that the downside of irregular heart beats is shortness of breath and fatigue, but that seems to come with this curse. msisbell@earthlink.net


Tom S' June 9 reply to John H's June 8, 2003 - Hi, This may not answer your question but might give you a hint. I have been on a 320mg daily dose of Lasix for nearly 7 years and the doctor has never reduced the dose over that time despite a similar question to him. His answer was that I never would get off Lasix due to the severity of my condition. Whether or not you stop taking Lasix altogether depends on your condition. bigheart@muchomail.com


Margaret D's June 9 reply to Bernard Z's June 8, 2003 - Hi Bernard, Yes, it is a good thing to have atrial fib with a normal heart rate. In the old days, if cardioversion didn't work, then the goal of treatment was only to control heart rate. Nowadays there are more meds to choose from than just digoxin, so many more people can actually be brought out of atrial fib. "Controlled" atrial fib still has the irregular rhythm that you are used to, but it's much easier for the heart than a rate of 250, thus the decrease in SOB and fatigue. I hope the cardioversion lasts! mdavis10@tampabay.rr.com


Kay R's June 9 reply to Jon's June 8, 2003 - Hi, I was diagnosed last Wednesday and the doctor put me on a diet of 800 calories and very low carbs with no meds at the time. I go back tomorrow and believe he plans to give me Lasix and something else that didn't sound familiar at the time but most likely will by Tuesday, thanks to all of you and this wonderful web site. Hopefully, the 800 calorie diet will be abandoned tomorrow. kayrockett@webtv.net
 
Jon's note: Did he say why the low calories plus low carbs? A good doctor never gives an instruction without stating a clear reason for it to the patient at the time it is given!


Kay R, June 9, 2003 - Hi Jon, Is your leg pain similar to the feeling you have when your foot or leg goes to sleep or when that feeling is wearing off? I have that in one foot and leg, and it's very bothersome, very discomforting, and I'm wondering if I will have it from now on. Can CHFers take Advil? What about painkillers like hydrocodone? Once again, a million thanks to all! kayrockett@webtv.net


Jon's June 9 reply to Kay R's June 9, 2003 - Hi Kay, No, mine is actual pain, ranging from a mild ache to a cutting/burning pain spreading up as far as my knee at times. NSAIDs are a bad idea in general. Narcotics are usually okay. Jon.


Patrick, June 9, 2003 - Hi, How many mgs of aspirin is best? I have been on 320mg aspirin now for over 3 years along with Lotensen, Coreg, and Zocor. I read somewhere that 320mg is too much and that 80mg is better. How many mg are all of you taking and are all of you taking aspirin per your doctors' recommendations? I just noticed a new tv commercial for Bayer aspirin that is a 81mg tablet and is suposed to be taken as a heart attack preventive measure. Have the guidlines for aspirin dosage been changed receintly by the American Heart Association or any other organization? Thanks and God bless. Patrick. NarleyHarleyGuy@webtv.net


Jon's June 9 reply to Patrick's June 9, 2003 - Hi Patrick, Not all CHFers need to take aspirin - I don't. It depends on your risk factors for heart attack and stroke. It is now thought that an uncoated 80mg aspirin is good for those at risk for such events. I don't pay too much attention to the AHA anymore. Jon.


Jon's June 9 reply to Kay R's June 8, 2003 - Hi Kay, I advise against getting a stethescope unless you have a very specific need and some proper training. Even cardiologists disagree with each other's findings with stethescopes. It's a true skill that must be learned through great repitition and proper teaching. See the heart sounds page. Jon.


Pat H, June 9, 2003 - Hi, Last week my cardiologist increased my dose of Accupril from 20mg twice a day to 40mg twice a day. I also take 6.25mg Coreg twice a day, 40mg Lasix once a day and 0.125mg Lanoxin once a day. I did not start the new Accupril dose yet because I had a lot to do over the weekend and I wanted no sudden changes in my blood pressure.
     When I told my internist about the change in the dose, she frowned. Now I am worried that the dose may be too high. I have just startted getting my energy back and the weather has improved. I am afraid I will feel horrible again and end up sitting in all day. Incidentally, Coreg does not affect me the way some other people have written about. Is anyone here on that large a dose? Again, Jon thanks for this wonderful site. Pat. pat_hammond@mindspring.com
 
Jon's note: Not now, but when I was in really bad CHF once, my heart doc raised my Vasotec dose to twice the target dose (same as yours is doing). I really dragged but I got better and eventually the dose came back down. Are you in a particularly bad spell right now?


Betty L, June 9, 2003 - Hi, I was just reading about the soft water and salt issue. What we use for water softeners to filter is lots of bags of a form of salt. Sometimes things are labeled sodium so you have to realize that labels don't always say "salt." There are so many kinds of sodium with big long names that we have to educate ourselves. Personally, every time I stay at my sister's house, we now buy bottled water and use it for coffee, cooking, and everything. I swell up within a day or two from the water softener. I went into an episode with my lungs filling up before I was diagnosed with CHF, and they treated me for late-onset asthma. So I now go nowhere near softened water and I take bottled water even to restaurants. I hope this helps out there. Betty. bettylaird@earthlink.net


Jack D's June 9 reply to John H's June 8, 2003 - Hi John, You will need to list all the supplements you have purchased to get a rational answer to your question. About Hawthorne berry though, a lot of people take it but it is a drug and as a drug it duplicates some of the actions of normal prescription heart medication. It can also interact with other drugs but because it hasn't been studied we don't know what interactions or side effects it really has.
     So if you take it you are most likely overmedicating and you are definitely setting yourself up for interaction problems that your doc isn't going to know anything about. maddjak@hotmail.com


Shery C's June 9 reply to Kay's June 9, 2003 - Hi Kay and all, For losing or maintaining weight, you might have to watch carbs and portions. A portion of rice or potato is 1/4 to 1/2 cup. Potato and bread should never be eaten at the same meal - you get one or the other, period. A portion of meat is about the size of a deck of cards. For those of you who are screaming, "What?" and I know you are, that is it. :-) Measure your food until you can tell the amount by looking. Discuss with your doctor what your carb limit per day should be.
     Learn the amount of carbs in all foods so that when you look at your plate you know exactly how many you are eating. Learn which carbs give you the most nutrition and which give you the most amount of "fill power." You can eat a bunch of cabbage or squash to equal the carbs of a small potato serving. Broccoli has some carbs but you can pig out on it if you have no starchy carbs. Add lemon, vinegars or spices to make vegetables taste better. Grab a sugar-free hard candy for dessert. Snacks involve fruit or veggies. I find keeping it all low sodium to be the biggest challenge, but then my idea of heaven includes a salt lick.
     Most hospitals have educational classes on nutrition. Some have support groups for heart diseases. Join them and learn. In the end, you are the one who is responsible for your care. Those of you who are saying, "I'd rather die than eat that rabbit food" will sooner rather than later, and with a not so great quality of life till you do. Like Nike says, "Just do it." Sheryl C. cvprehab@hotmail.com


Betty L, June 9, 2003 - Hi again, I just wanted to mention that there is a web site called megaheart.com started by a guy who also has lived with CHF for many years. He also has low-sodium recipes and has a cook book - the only one I've seen - that is called "Lowest Sodium Cookbook." You might want to check out the web site also for lots of healthy tips as are here. Have a good day, Betty. bettylaird@earthlink.net


Jim, June 10, 2003 - Dear Jon, This is my first post but I am so grateful for all the help from your web site. I was diagnosed with CHF 2 years ago after carotid artery surgery. I am 87 years old and had a 5-way bypass surgery 3 years ago. I am on 325mg aspirin, 75mg Persantine, 20mg Mevacor, 150mg Zantac and 25mg metoprolol (changed from Coreg because of side effects) TID, 100mg hydralazine TID, 40mg Isosorbide TID and 20mg Lasix as needed. My ejection fraction was 28% and I am doing well on these medications with the exception of really severe itching all over my body. I was prescribed a salve containing Aveeno, which doesn't seem to help any more. At my care manager's suggestion I use Dove soap and an Aveeno body scrub. Can you help? JBoyJMS@aol.com


Kelly, June 10, 2003 - Hi, My dad was diagnosed with CHF in 1994. He was referred to the transplant program at Rush St. Luke's in Chicago Illinois in 1995. Fortunately he had a PET scan in 1995 and did not need a transplant, but did have a quadruple bypass done. I am grateful for everything the transplant team did for him. Things have gone quite well since except for him coding twice after they took him off Lanoxin.
     Saturday he went back into the hospital and apparently he in retaining a ton of water. He is on 60mg of Lasix daily. Usually he jokes that it can get water out of a rock, but it isn't working. In addition he is on Coreg, capotril, Lasix and Lanoxin. He also was recently diagnosed with diabetes but thankfully he is not insulin dependent. They are doing a bunch of tests tomorrow because they are also concerned about liver failure. We live in Rockford, Illinois and the docs are now talking about referring him again to a teaching hospital such as Rush St. Luke's, the university hospital in Madison, Wisconsin, or a Mayo Clinic, because they say these places have the newest technology. The transplant team that was at Rush back in 1995 is no longer the same docs.
     I am looking for advice and opinions on these CHF programs or others that are equally good or better. I want him to be in a place that he has the best options, yet he needs to feel comfortable with the docs and the nurses. He turned 66 in May and has an awesome attitude and a huge will to live. Today he had an extremely difficult time breathing and was scared. What scared me is that he never complains and today he was almost panicked. Not that I blame him, I just feel helpless.
     The docs are also saying he may have pulmonary hypertension, which is a new development. Before his bypass his EF was 13%, which has gone up to approximately 26% at one time. The echo he had today still reported it is between 20 and 30% but I don't have an exact number. Please, can anyone offer any advice, especially on any of the above mentioned programs? Respectfully, Kelly. kagie6@earthlink.net
 
Jon's note: It's a 2 hour drive but I would suggest Marc Silver at Christ Medical Center. Technology is not as important as the right CHF doc.


Don's June 10 reply to Natalia L's June 8, 2003 - Hi Natalia, I'm glad to hear you are doing well. I received my transplant May 25, 2003. Other than being a little stiff and sore, I feel great. Every day gets a little better and I get a little stronger. I'm not overly concerned about the lowering of my immune system. My doctors told me to use common sense and avoid people with colds for the first 6 months or so; just be smart, stay on my toes and do the things we should all be doing to decrease our chance of getting a cold or flu. I do, however, wash my hands almost constantly. pine32@pacbell.net


Jon, June 10, 2003 - Hi everyone, I got enough feedback to persuade me to buy some decent commercial chat software. However, I have to save a bit more money, so don't hold your breath. Prices have gone up since I last looked. To those who wanted to contribute, anyone can donate at anytime and it's tax deductible. See www.chfpatients.com/about.htm for further information if you're interested. Jon.


Paul D's June 11 reply to Jim's June 10, 2003 - Hi Jim, This may sound crazy but have you thought about your laundry detergent? Some of the "fragrances" that are left in clothes by laundry products are chemicals that can be very irritating to sensitive skin, and I know my skin has gotten more sensitive since I started meds. I've found that fragrance-free products and bath soap have helped me, and they are becoming easier to find at stores. It might be worth a try. It may take a few washings to get the chemicals out of your sheets and clothes - some of them are really persistent! therealpauld@netscape.net


Jacky, June 11, 2003 - Hi, I am on 12.5mg Coreg twice daily, 200mg amiodarone, 80mg Diovan, 10mg Lipitor, 20mg Lasix, 0.10mg Synthroid and an 81mg aspirin, all daily. Can someone tell me how you tell the difference between medication side effects and cardiomyopathy symptoms. I sometimes think I should just stop all the medications! Maybe I would feel better, Jacky. Jackymwb@aol.com


Jon's June 11 reply to Jacky's June 11, 2003 - Hi Jacky, You probably would feel better - briefly. Then, you would experience raised blood pressure, fast heart rate, increased fatigue and not long after you would become short of breath all the time and start coughing. Soon, you would be in heart failure big-time. Unfortunately, you would never regain the degree of wellness you are currently at regardless of how well you took your meds after restarting them.
     Many CHF meds have side effects that do indeed mimic heart failure symptoms. It frustrates us all, believe me! It helps to really stick to the low sodium diet so your diuretic dose can be as small as possible - too much diuretic makes you tired. Also, do a regular exercise program every day - no matter how pathetic your own exercise routine may seem to you, over time it will make a positive difference.
     Our meds are multiple purpose. They slow disease progression by relieving the stress on our heart muscle, reverse heart remodeling, and fight our overactive nervous system's responses to a weakened heart. By doing all this, they eventually make us feel better as well. Unfortunately, this can often take a considerable amount of time. Hang in there, and be sure you are treated by a heart failure specialist. Also, be sure you are regularly tested for all that you should be, including for amiodarone (Cordarone) effects. Try taking CoQ10 as long as you take Lipitor as well. Jon.


Kay R, June 11, 2003 - Hi Jon and all, Has anyone been diagnosed or known of someone who was diagnosed with CHF and an enlarged heart strictly on the basis of an x-ray? What do you think of a doctor making the diagnosis and not even listening to your heart with a stethoscope? Does that sound strange, or could there be an explanation for that? Jon, please put in your 2¢ on this one. Thanks. kayrockett@webtv.net
 
Jon's note: A complete physical exam, BNP blood test, and echo should be used to positively identify previously undiagnosed heart failure, in my opinion. The only optional one is the echo.


Jack L, June 11, 2003 - Hi, I am a 28 year old who was diagnosed with CHF a year ago. My EF was around 26%. Six months ago I lost my job and 2 months ago I lost my health insurance. I have been struggling with getting my meds. I have tried to find work, but it is hard - I haven't been able to pass a physical.
     I recently decided that I am going to have to file for SSDI/Disability. I know that it takes a long time for it to be approved or denied. I have applied for help through the county that I live in, and they told me they have to wait for SSA to decide on my disability before they can step in. Does anyone have any suggestions as to how I can keep a supply of meds while I wait for the decision? I know that I have been really depressed lately and it's been hard to get out of bed. I have even gotten to the point that I don't want to let my 6 year old daughter see me like this. Any advice? jwl0273@yahoo.com


Shery C's June 11 reply to Jim's June 10, 2003 - Hi Jim, How awful that you itch all over. That must drive you crazy. Are you and your doctor sure this isn't a reaction to one of your medications? Have you changed detergents? Anyone started bleaching your sheets? Do you use a fabric softener? New pajamas? Is there a rash or just dry skin? There could be several reasons. Give us some more clues. Sheryl C. cvprehab@hotmail.com


Tom S' June 11 reply to Jim's June 10, 2003 - Hi Jim, After nearly a decade of suffering from itching, I've pretty well narrowed it down to the excess water buildup that must be occuring throughout my body, especially in the butt, leg and calf area of my body. While I don't swell up in those areas, I have gotten water blisters on the butt, particularly when I first lay down at night or am extremely tired.
     My EF is running between 15 and 20% at the moment and I experience a daily bout of itching sometimes late in the evening and almost always when I do go horizontal in bed. I do find relief in a most unusual away. I keep small spray bottles (the eyeglass cleaning kind) of alcohol by my bedside and even next to my computer. When I itch, I spray the area with plain old rubbing alcohol. I haven't got a clue why it works but it does seem to relieve the itching, and what's more important it does so pretty fast.
     By the way, I have also discovered that I am starting to become sensitive to certain soaps so perhaps you could even be allergic to the soaps you mentioned, and may not even know it. bigheart@muchomail.com


Jacky's June 11 reply to Jon's June 11, 2003 - Thanks Jon, I just needed to be reminded of a few things! I did start seeing a CHF specialist when you advised it. I like him and he treats CHF very aggressively so I will continue with my meds and be thankful there is something I can take to delay the progress of the disease. Again, thank you. Jacky. Jackymwb@aol.com


Ron, June 11, 2003 - Hi, I am seeking some information from anyone that has had a pacemaker put in. I was diagnosed with cardiomyopathy and CHF in November of 2000. I am on Coreg, Coumadin (warfarin), and Tikosyn for a-fib; also Zestril and Pravochol. My doctor would like to put a pacemaker in because my heart rate is 38 to 40 beats per minute. I am a little reluctant, but would love to get some information on how it has helped those of you in my situation, if at all. I am doing fairly well, but run out of gas a lot! They say the pacemaker will help me. Any information would be appreciated. Thank you. RyoungAngora4683@aol.com


Robert S, June 11, 2003 - Hi, I have another problem. My CHF is really under control. I have been well compensated since my diagnosis and I have my echo/stress tests next week, which I am sure will be fine. However, I have been having some ancillary problems that I hope (or not) some of you have gone through.
     In the past 2 months, I have had a couple of kidney stones - so small I don't see them when I pass them, but painful nonetheless, and Friday I was diagnosed with gout! I am in the age range of people who get kidney stones (typically white men between 20 and 40) but the gout diagnosis is strange except that my Internet research tells me that diuretics can make symptoms that appear to be gout (increaded uric acid, swelling in the joint under the big toe) but are not in fact gout. In fact, diuretics can contribute to kidney stones too so I'm sorta stuck!
     To top it off, my PCP - and that is a nominal title because I am a graduate student and I have to go to the university health care clinic for things other than my CHF - prescribed Celebrex to me for the gout pain and inflammation, and I have now discovered that I should not take it because it is an NSAID. The nurse practitioner said something like, " Well, you can take care of your toe or your heart then." That did not give me much pleasure at all. I wonder if a law suit might.
     This is an incredibly verbose way of asking for advice. Has anyone else here experienced gout/kidney stones from the diuretics? What to do that is not an NSAID? rsterner@ucla.edu
 
Jon's note: Why not allopurinol?


Kathy, June 11, 2003 - Hey Everyone, No more nausea! After dealing with nausea and dry heaves 10 to 20 times a day to the point of having to pull over to the side of the road, since Christmas I'm free of it. Two weeks ago my PCP took me off Lotensin, Digitex, and Lipitor. He told me to wait a week and begin taking Cozaar. I feel so much better now. The nausea was exhausting and upsetting.
     Today I saw him and he put me back on Lipitor but is keeping me off Digitex. He said the dig was causing my nausea even though my blood levels were fine. Does this make sense? I gotta admit I am one of those people who can be very sick and still be subclinical. Is going without digitex okay? I'm on Coreg, Lasix, Cozaar, protonix, lipitor, nitro, starlix, and trazadone. kathyh@linkny.com
 
Jon's note: It should not affect risk of death to go without digoxin.


Joe S' June 12 reply to Jackie's June 11, 2003 - Hi Jackie, Listen to Jon and most doctors. I honestly felt that when my cardiologist told me my aortic valve and artery were great, that I could stop all the diet stuff. Boy, was I wrong?! I suffered for almost 4 months first with swollen legs and no direction on water pills. I had insomnia for 60 days because of this. My old docs told me I would have to regulate my diet and salt content for the rest of my life. I felt that after 60 years of this I could stop. I was wrong. Joe S. jes@gbis.com


Emily A, June 12, 2003 - Hi, I had a salad today for lunch and it came drenched in a super salty dressing. I was in a hurry and am new to CHF, but I thought, "What harm could it do?" and had it anyway. Within an hour I felt terrible. I checked my blood pressure and it was fine, but my heart rate was through the roof. I was naseaus, lightheaded, and felt generally miserable. Is there a direct correlation between heart rate and salt intake? What do you do if your heart rate goes up like that? What heart rate is dangerous? Thanks for the help. emilyadams@sbcglobal.net


Athina, June 12, 2003 - Hi, I don't know if this information will benefit anyone but I recently received an audio tape of a talk given by Dr John Lee about natural progesterone. One of the topics covered was the benefit it may give to women who have gone through menopause in relation to heart disease. Apparently some studies support this. Again, I am not sure if this can help anyone but it may be worth looking into. He has a web site you can browse. athina.nanos@griffithhack.com.au


Joanne R's June 12 reply to Robert S' June 11, 2003 - Hi Robert, I'm adding my opinion to Jon's. My doctor put me on 300mg allopurinol per day and the gout pain has not returned. Allopurinol gave me better relief than any NSAID I tried, plus I have learned that, as you pointed out, NSAIDs are not good for us. I don't know if allopurinol would help with kidney stones but it's worth checking out. What a helpful nurse! Maybe she just doesn't know any better. Be well and God bless. Joanne. muddyrds@hotmail.com


Joanne R's June 12 reply to Jim's June 10, 2003 - Hi Jim, I have had to begin using the detergent called "All Free and Clear." It's in a white plastic container and the Lever Brothers company says it is an allergen fighter. You might check out your diet also. My daughter has become allergic to apples (of all things) since beginning treatment for rheumatoid arthritis and I broke out in a rash after drinking Celestial Seasonings brand Sleepy Time herbal tea. If it's not one thing, it's another! Be well and God bless. Joanne. muddyrds@hotmail.com


Katherine H's June 12 reply to Ron's June 11, 2003 - Hi Ron, After you read everything Jon has on pacemakers, I would refer you to implantable.com for specific pacemaker questions from those of us who have them.
     Mine (a biventricular one) has made a huge difference and has improved my ejection fraction to 45% from 30%. I literally thank God for it every day. Even my arrhythmias are better and I was able to cut my use of amiodarone by 50% with the possibility of going off it completely later this summer. You can e-mail me directly if you have specific questions. Good luck! kholian@msn.com


David W's June 12 reply to Robert S' June 11, 2003 - Hi Robert, I have CHF and gout also. Like Jon said, take 300mg allopurinal to control gout. You must take the allopurinal every day. Also, keep your purine level low. I only take NSAIDs if I am in a lot of pain and only once in a great while.
     An update on my weight loss surgery: My PCP and heart doc approve. My heart doc said losing weight would help a lot if I ever need a heart transplant. I am waiting for insurance company approval and a surgery date. davybwilsob@webtv.net


Lorraine's June 12 reply to Ron's June 11, 2003 - Hi, You asked about pacemaker experience. My husband, who is 76 now, had his first one implanted in 1994. It lasted 7 years and was replaced in October of 2001 by a Medtronic Insync with 3 leads instead of 2. It is working fine and he probably would not be here now if he had not gotten one in 1994. His heart rate was around 45 beats per minutes. The pacemaker should make you feel better. His was set at 60 but then changed to 70 and it sure helped him. Good luck and God bless. gandlsimpson@msn.com


Shelley B, June 12, 2003 - Hi, I am 32 years old and recently diagnosed with CHF. I am wondering if I can have children. I can't seem to get a straight answer from my doctor. My clock is ticking and I wonder if I'll be able to have babies with this disease. shelly.bennington@ppcc.edu


Jon's June 12 reply to Shelley B's June 12, 2003 - Hi Shelley, Here are 2 replies addressing the topic from a couple of heart failure specialists I trust, paraphrased, of course.

Pregnancy is always a difficult subject. It's very difficult to give an "all clear" to a prospective mother. If you do that and something goes wrong, the doc is at fault. It is the woman's decision about seeking pregnancy and the doc's job to provide useful advice. Some important facts are:

  1. History of heart failure increases risk of future heart failure with or without pregnancy.
  2. Normalization of heart function may reduce risk of recurrence of severe heart failure but this has not been proven. The more heart dysfunction or enlargement present when starting a pregnancy, the greater the risk of deterioration during pregnancy.
  3. ACE inhibitors must be stopped during pregnancy, thus increasing risk of heart problems during pregnancy. ARBs cannot be used either, also due to risks to fetus.
  4. Pregnancy greatly increases cardiac output requirements although blood pressure tends to fall and the mother becomes vasodilated during pregnancy.
  5. Mother nature provides a powerful incentive for procreation to all prospective mothers. A nice guy in a white coat finds the competition for a prospective mother's opinion very difficult. The doctor takes care of the patient as well as possible, regardless of the decisions that the patient makes.

Complicated answer without much data. Basically, the risk of pregnancy is twofold: The hemodynamic risk (remember that a pregnant woman needs to be off ACE inhibitors; 2) The immunological risk - there is some evidence that a woman becomes more susceptible to viruses during the end of the pregancy.
     As a general rule I have gotten a few dozen women through a pregnancy (and most docs just say no) if:

  1. They have normalized and sustained their improvement in LV function.
  2. They are fit, as demonstrated by a normalized CPX (Vo2max).
  3. They have a good team of an OB/Gyne and CHF specialist.

Jon.


Chuck H's June 13 reply to Emily A's June 12, 2003 - Hi, I personally have found a direct effect between a salty meal and fast heart rate. It seems to make the heart start working harder right away (I think) due to salt's affinity for holding water. I've asked the doctor what to do about this and he said, "... salt very bad. Avoid salt." I personally would rather pop an extra pill (diuretic or beta-blocker to keep heart rate down) than avoid salt, but I haven't heard a doctor agree to this. They just tell me to absolutely avoid the salt. I am on 150mg Lopressor per day, digoxin and 20mg Prinivil, so my heart rate is pretty well controlled, although a beta blocker alone didn't do it for me, as I seem to need the digoxin. ital880@cs.com


Michael, June 13, 2003 - Hi, We are leaving for Greece and although we have been several times before, I didn't have CHF then and didn't need to watch for salt intake. Has anyone been and have suggestions on foods low in sodium? Did you find it easy to request and get foods prepared without salt or salt products? Thanks! mikeyeholland@aol.com


Cat, June 14, 2003 - Hi, I just recently developed swelling in my hands, face, and feet along with an unstable heart rate and blood pressure. The doctor suspects kidney problems and/or an electrolyte imbalance. He ordered a wide range of laboratory tests and in the interim has also switched me to Demadex. Since blood magnesium in the laboratory testing is of little value, how can magnesium deficiency be definitively diagnosed? Is the 24 hour magnesium loading test a more definitive test? Also, can a change in diuretic work more effectively than one you had been taking for years? Any input would be appreciated. lafsalot2000@yahoo.com


Deirdre, June 14, 2003 - Hi, I was diagnosed with CHF in April of 2000. Last Monday I went to my PCP and he prescribed an antiobiotic, telling me I have a bacterial infection in my trachea. He also told me to take Robitussin cough medicine. I ran a low-grade fever until Thursday. I still have the cough and feel weak and tired.
     Do viral and other infections take longer to heal when you have heart failure? Lately it's a rare day when I feel my best. Any comments appreciated. Thank you. SkipD1025@aol.com


Cathy, June 14, 2003 - Hi, I need to get off my 50mg of Coreg, which I have been on for 4 years. I take 25mg in the AM and 25mg in the PM. How would you suggest this be done to have least effects? I remember the effects when I was increasing so slowly. It certainly scares me but I must do it. Pray all goes well. Thanks. cdpalmer@megalink.net


Jon's June 14 reply to Cathy's June 14, 2003 - Hi Cathy, If lack of funds is the reason, please consider switching to Toprol-XL, which is a different and much cheaper beta-blocker that is approved for treating heart failure. If there is another reason, please get different dose pills from your doctor and go off it very slowly. I recommend 8 weeks at each dose before reducing it to the next level. Perhaps a drug like hydralazine (it's very cheap) would help your blood pressure during the process. I tried going off Coreg without success. Please include a doctor in the process! It could be dangerous otherwise - I truly believe this after my experience.
     To those who donated to CHFpatients.com, Inc., recently, a big thank you. Now my wife can work online while I am also online. Our desks are next to each other and this is a wonderful change. :-) Jon.


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

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