The paperwork never ends The Archives
August 16-31, 2005 Archive Index CHFpatients.com

Jacky B 8-16     heart block and beta-blocker question
 
Richard W's 8-16 reply to Sue H's 8-10     humor is great therapy
 
Jennifer G 8-16     thank you for sharing experiences
 
Richard C 8-16     seek bypass surgery & vision problems experiences
 
Jennifer G's 8-16 reply to Jon's 8-15     thank you
 
Sergeant H 8-16     Coreg making me depressed - anyone else?
 
Jon's 8-16 reply to Sergeant H's 8-16     Coreg and depression
 
Tony M's 8-16 reply to Jennifer G's 8-10     CHF and surgeries experience
 
Angelina D 8-16     could this be CHF?
 
Susan D 8-17     what would you do?
 
Roger G's 8-17 reply to Angelina D's 8-16     suggestions
 
Roger G's 8-17 reply to Sergeant H's 8-16     Coreg experience
 
Michelle A's 8-17 reply to Angelina D's 8-16     palpitations, anxiety
 
Donna P 8-18     is this unusual?
 
Cheryl C's 8-18 reply to Angelina D's 8-16     pre-diagnosis anxiety & to Bill and Margaret
 
Roger G 8-18     LVAD article
 
Jon 8-20     update on my doc visit
 
Jon 8-20     donations
 
Gene G 8-20     Natrecor information
 
LaKeisha J 8-20     how can I help Mom eat better?
 
Kevin F 8-20     intro
 
Jon 8-20     new gadget - seeking opinions
 
Cheryl C's 8-21 reply to Jon's 8-20     Medic Tag
 
Roger G's 8-21 reply to Jon's 8-20     Medic Tag
 
Norma L's 8-21 reply to Jon's 8-20     Medic Tag
 
Cheryl C's 8-21 reply to LaKeisha J's 8-20     eating better with heart failure
 
Donna V 8-21     Pat has moved, prayer request
 
Bob 8-21     is anyone else on dialysis? & more
 
Jacky B 8-21     good friend died & more
 
John M 8-21     how do I reduce fluid intake but not feel dry?
 
Evan M 8-21     loved one has heart condition
 
Cathy D 8-21     what about vacation at higher elevation?
 
Myrtle C 8-21     mental illness
 
Elizabeth K's 8-22 reply to John M's 8-21     coping with limited fluid intake
 
Michelle A's 8-22 reply to John M's 8-21     coping with limited fluid intake
 
Norma L's 8-22 reply to John M's 8-21     coping with limited fluid intake
 
Tony M 8-22     in case of emergency
 
Scott B's 8-22 reply to Cathy B's 8-21     vacation at higher altitude thoughts
 
Roger G 8-23     seek Lunesta experiences
 
Valerie R 8-23     fluid restriction, meds & sun
 
Roger H's 8-24 reply to Cheryl C's 8-21     low sodium foods
 
Gene G's 8-24 reply to Roger G's 8-23     Lunesta
 
Lowell P 8-24     Lasix, potassium questions
 
Jon's 8-24 reply to Lowell P's 8-24     Lasix, potassium
 
Jack D's 8-25 reply to Lowell P's 8-24     Lasix, potassium
 
Jennifer G's 8-25 reply to Cathy D's 8-21     vacation at higher elevation
 
Jennifer G's 8-25 reply to Lowell P's 8-24     potassium and diuretics
 
Susan B's 8-27 reply to Cathy D's 8-21     Grand Canyon trip
 
Norma L's 8-27 reply to Jennifer G's 8-25     potassium and diuretics
 
Karen K's 8-27 reply to Jennifer G's 8-25     potassium and diuretics
 
Cheryl C's 8-27 reply to Roger H's 8-24     low sodium foods
 
Carol R 8-27     how can I help my mom?
 
Dana W 8-29     EF up and down - anyone else?
 
Gayle A's 8-29 reply Kathy D's 8-21     vacationing at higher altitudes
 
Dennis F 8-29     seek suggestions on ICD implant
 
Tina A's 8-29 reply to John M's 8-21     watermelon helps my thirst
 
Tom S's 8-29 reply to Carol R's 8-27     coping with heart failure
 
Tina A 8-29     fatigue, grief, diet issues - seek advice
 
Kathy C 8-29     ask questions of the doctor - always
 
Jack D's 8-31 reply to Tina A's 8-29     watermelon is mostly water
 
Joseph S 8-31     could my feet swelling be heart related?
 
A J 8-31     does heart failure make colds worse?
 
Jon 8-31     thank you
 
Cheryl C 8-31     fluid intake and fruit
 


Jacky B, August 16, 2005 - Hello, I am thinking of asking my doc to change me from Coreg to Toprol-XL. However, when I read the Toprol web site it said it should not be taken by people with slowing down of electrical signal and second and third degree heart block. Does any of this refer to LBBB? jackymwb@earthlink.net
 
Jon's note: If you can tolerate Coreg, you can easily tolerate Toprol-XL. The advice you quote has to do with all beta-blockers - keep in mind that we CHFers should all take beta-blockers yet a very large percentage of us have heart block of some kind.  ;-)


Richard W's August 16 reply to Sue H's August 10, 2005 - Hi Sue, I had an ablation five years ago and it's 90% successful. It's intricate, though not dangerous. The precise location of the heart's misfiring must be located and then zapped. My procedure took more than two hours and it was conducted under a general anesthetic - no pain, no discomfort.
     An interesting side note: Just as the procedure was about to start, the anesthesiologist standing at the foot of my operating table, began telling a joke to two nurses which I could hear and it was plainly, shall we say, off-color, very off-color - my sort of humor. Just as she was about to deliver the punch line, she said, "Hold on a second, I've got to start his IV." Knowing that I had perhaps ten seconds of consciousness, I protested. I insisted that I wanted to hear the punch line. She was mortified. She thought I wasn't listening, but I was insistent.
     She started the IV and said to me that I wouldn't remember any of this conversation anyway. She was wrong. I was determined to fight the juice until I heard the punch line. More than two hours later, when I regained consciousness, the first words out of my mouth were the punch line, which I cannot repeat here. She was horrified. She said, "If I'd known you would retain that, I'm not sure I would revived you!" Humor is great therapy! CRichardW1@aol.com


Jennifer G, August 16, 2005 - Hello and thank you to everyone for your input regarding non-heart related surgery for those with CHF and irregular heartbeats. I feel so much better having heard from all of you and much more encouraged about going through with having my gall bladder removed.
     I also considered Jon's advice in an earlier post about finding another cardiologist that I feel more comfortable talking to and less intimidated by, and met with a new doctor who is at the same hospital that the surgery will take place. I have an echo scheduled with him tomorrow. He is being very thorough before officially approving the surgery. I feel much more confident already and thank you all again for taking the time to post back with your experiences and opinions. Jennifer. jennifer@doublegates.com


Richard C, August 16, 2005 - Hi, I am a newcomer to heart problems and as far as I know at this time am not in CHF, but have had to have a pacemaker and coronary artery bypass surgery plus right carotid artery surgery. I experienced some dimness and blurring of vision in both eyes but worse in the right eye, following the surgery. The doctors told me that it was quite common and would return to where it was before surgery in six to 12 months. I am now three months post-surgery and have not seen any sign of improvement. Actually, it seems to be slightly worse than it was to begin with.
     Can anyone on this board tell me if they or someone they know has experienced this problem and if they recovered the lost vision? I know that my problem seems very small after reading about some of the things that others on this board have faced and handled, however the last seven months have been a series of medical mistakes and blunders on the part of these doctors, so I would like to hear from someone who has been there, done that. Please answer me if you can.
     Thanks and may God be with all of us. Richard. SueHMorton@aol.com


Jennifer G's August 16 reply to Jon's August 15, 2005 - Hi Jon, I meet with the cardiologist tomorrow, then the anesthesiologist on the 29th. You've got perfect timing! Thank you for the suggestion. I would have never known to ask about that or to request the anesthesiologist stay for the duration of the surgery. I'm a big baby when it comes to surgery and hearing from everyone has made me feel so much better! This is a very caring and generous bunch! Jennifer. jennifer@doublegates.com


Sergeant H, August 16, 2005 - Hello everyone, I am unable to handle Coreg. It causes me to have apathy, depression and nausea, which are pretty bad. I haven't been able to get through more than a month on this drug and lost about twelve pounds in that time. My doctor had me on a dose described as "barely therapeutic." This medication is intolerable. Has anyone had these same side effects and did they ever go away? Thanks. CSMHammer@hotmail.com


Jon's August 16 reply to Sergeant H's August 16, 2005 - Hi, You don't actually state your Coreg dose. However, 12.5mg twice a day is generally considered the lowest therapeutic dose for heart failure. Starting dose should never be that high and in fact should be 3.125mg twice a day. It is also well documented that some people, especially those with history of depression, often cannot tolerate Coreg and should not take it if it aggravates their tendency to depression. I believe this is true of all current beta-blockers. I hope this helps, Jon.


Tony M's August 16 reply to Jennifer G's August 10, 2005 - Hi, I had 18 inches of my colon removed a year after being diagnosed with CHF and my surgeon who removed it with my cardio doctor's permission used a lesser amount of the narcotic drug that they use on on regular patients and put in an epidural line into my back that kept me from going under so deep with the narcotics. The epidural stayed in for a week, then it was removed.
     That was four years ago. I have since had two neck surgeries, one last year that fused 4 of my discs and one about 4 weeks ago that fused all of my neck discs C-1 through C-7. On the neck surgeries they can't use an epidural for pain when they operate on your spine so I had to have a special cocktail of drugs that put me out, then during the operation - as they put it - used massive amounts of steroids to make my heart work while I had the surgery. My current ejection fraction was about 35% so I was nervous but came out okay.
     I had to have the neck surgery. All my discs had gone out and bone spurs were growing all into my neck and causing more pain than you could ever imagine. One of the plates they put in last year had twisted and broken off one of the screws. It made my blood pressure go crazy until it was affecting my heart. I hope your doctor uses the epidural on your operation because I had zero pain while it was hooked up. Thanks, Tony M. ynotmyrick@yahoo.com
 
Jon's note: It's also a good idea to ask for a bispectral index to be used.


Angelina D, August 16, 2005 - Hello, I am hoping someone can please help me. I've been to the doctor several times and every time she listens to my heart she says it sounds fine. I am going back in a week for an ECG. Okay, here is a list of things you may need to know: I have no heart disease in my family. My family medical history is fairly good other than my grandmother developed diabetes after surgery in her 50s. My medical history was okay until 4 years ago when I started having anxiety. Now, I know people think this is the cause but I can tell you this isn't the same heart issue as what anxiety causes.
     What's been happening is that off and on for years I've been waking up with this strange hard heart beat that is almost painful. I don't wake up nervous, scared or anxious. I just wake up relaxed but it feels like my heart isn't pumping hard enough. Like it's really slow and almost can't pump. I have to move around to calm it and even then, if I've been sitting still for awhile, it returns. Sometimes at night my limbs go numb. I am often dizzy but my doctor says it's allergies and my inner ear.
     I always feel there is something wrong with what's happening. I don't feel right at all. I was reading about a heart disorder that sounds pretty much just like this. CHF is what I read about. Now, I am 29 years old and not an active woman like I should be. I don't know if this information helps or not. I also eat somewhat okay. I wouldn't say great but I wouldn't say bad. Can someone please tell me if this sounds similar or even possible to CHF? I appreciate any information available. You can e-mail me back. Thank you. Angelinadebem@aol.com


Susan D, August 17, 2005 - Hello, I would like an opinion, please. The situation is an 88 year old end-stage patient. His meds are 3.125 mg Coreg twice a day, Diovan, spironolactone, Lasix, and some other things including Ativan, morphine, and Reglan. The issue is low blood pressure. Historically, the problem was high blood pressure. Through mid-July of this year blood pressure was pretty good, around 130/70. For several weeks now his blood pressure has been 110/40 and lower at times. This has produced terrible dizziness, additional fatigue, more weakness, mental confusion.
     There is discussion about removing Coreg to raise his blood pressure to see if this makes him feel any better. I am not comfortable with this at all, wondering if the removal of Coreg will increase heart failure symptoms and thus produce suffering. From this list of meds, Coreg strikes me as the only thing likely to have a lowering effect on blood pressure. Is this correct?
     My feeling is that the lowering BP is simply advancement of his heart failure in general. This is a hospice patient so decisions are not so much about life-saving choices as comfort choices. What would you do? duetfarm@mindspring.com
 
Jon's note: For what it's worth, most of the meds you list will lower blood pressure.


Roger G's August 17 reply to Angelina D's August 16, 2005 - Hi Angelina, Your doctor may be right but it would not hurt to tell your doctor you want to be evaluated for arrhythmias, which are simply abnormal beats and most people have them from what my doctor tells me. Some abnormal beats are not life-threatening and some are very serious. For example, I skip a beat from time to time, about one in 25, and it's no big deal. What follows is called an escape beat, which can sometimes pound me in the chest and I notice these most at night. An EKG is only a 10-second snapshot of cardiac activity. There are other methods, like a Holter Recorder, to record 24 to 48 hours of cardiac activity. The most important part is that you are confident that you do not have a condition or get treatment if you do. I wish you the best. rogergthree@earthlink.net


Roger G's August 17 reply to Sergeant H's August 16, 2005 - Hi Sergeant, Yes! Coreg is a powerful med and may cause all these things you discuss. I had them all and still stuck to it. Every time I got adjusted to the dose, they raised it and it happened all over again. I know that's not good news to you but I do feel better now. It took about six months to get adjusted to the optimal dose for me of 25mg BID and I have been on Coreg for many years now.
     I wish you the best and encourage you to work with your doctor. Give yourself time to adjust and then raise the dose if you can. Also, not everyone can tolerate Coreg. For me it was a big trade and I had many thoughts of getting off Coreg. I am happy I stayed the course. rogergthree@earthlink.net


Michelle A's August 17 reply to Angelina D's August 16, 2005 - Hi Angelina, I am also 29 and I have had CHF since age 16. I was born with severe heart defects. I thought of a couple of things when I read your post. I recently read a study in which healthy patients with anxiety disorders were found to report symptoms like yours a lot more often than heart patients do, even when they do not report feeling anxiety at the time of their symptoms. If you're getting help for your anxiety, talk to your doc or therapist about your symptoms. If not, you may want to think about getting help. Anxiety and depression can cause and worsen palpitations in the absence of heart problems, and they can make symptoms worse in heart patients. Remember that lots of healthy people get palpitations, too.
     Whether or not your symptoms are being caused by a heart problem, you should start taking better care of yourself. I've had the same symptoms you've described, and regular exercise helps a lot. So does eating a low fat, low sodium diet although if you don't have heart or kidney problems you don't have to be on a low sodium diet. I get these symptoms much more often when I haven't been exercising enough, after I've eaten food high in fat or salt, and when my symptoms of CHF are severe. Are you having any other CHF signs or symptoms, besides palpitations?
     I've had my palpitations show up on EKGs, echoes, and a couple of caths. Fortunately, although they are uncomfortable and sometimes painful, they usually aren't dangerous. If your EKG is fine, yea! But don't give up if you really don't feel right. If you are diagnosed with a heart problem, you already have a great place to go on the web for education and support. Good luck! miship@hotmail.com


Donna P, August 18, 2005 - Hi all, Thank you Jon, so much for this excellent site. I have learned so much from it since my CHF diagnosis in February of 2005. I was first diagnosed after the two quacks I saw twice before in November and January of 2004 told me I had asthma. I shudder to think what could have happened if I hadn't been properly diagnosed after suffering for four months. After three days in the hospital and numerous tests I was told my EF was 25%. I was put on Altace, Coreg and Lasix and sent home. I did my follow ups and kept on the meds.
     At my 5 month checkup I was totally blown away when my cardiologist told me I needed an ICD and I was at a high risk for sudden death. I though I was doing great, figuring he would take me off some of the meds. Instead I get that happy news. Since then I have a whole new education, thanks to this site, on CHF. He then scheduled me to see a electrocardiologist (I think that's what he was) who confirmed that I needed a ICD and scheduled a MUGA scan for me. Yesterday I got the scan and as I was waiting for the results the doctor came in and started to explain the ICD procedure and answered some of my questions about it. When the results finally came he was kind of shocked. My EF was up to 58%!
     He said that this didn't happen very often and he was sort of in shock. I think it made him look bad! So now I am scheduled for an echo in a couple of weeks to confirm my improvement. He also told my my bundle branch block had disappeared. I'm just amazed. Does all of this sound familiar to anyone? Am I our of ordinary or can this really be happening? My life has been a roller coaster ride for a month and a half. I really don't know what to think. Help! patdonna2@aol.com


Cheryl C's August 18 reply to Angelina D's August 16, 2005 - Hi all, First off I have been reading the posts and would like to also relay my experience before being diagnosed with CHF. For a couple of months before going to the hospital with extreme symptoms, I would have what I thought might be panic attacks when I went to do my weekend shopping. My heart would start to pound and I had a hard time breathing. In addition I would feel a little nauseated and just wanted to be done and go home. Another thing that I just remembered was telling my husband that my saliva tasted like salt water. That's bizarre since it turns out that I was also retaining water all that time. It was so uniform that I really didn't notice. I wasn't eating much (got full very quickly) and was uncomfortable after eating also.
     To Margaret and Bill, I'm so sorry but our computer crashed right after receiving your last e-mails to me and I've been so busy at work that I didn't get a chance to answer you there. When I went back in to my Yahoo account, your messages were gone. I can't remember exactly what they said, but I didn't want you to think I just didn't answer. I've adjusted a little to the 25 mg Coreg dose but it's still making my life miserable. The sleeplessness isn't constant every night now, but most! I yawn all day and have been pretty short of breath. Once again, sorry for not answering. If you write again, I will answer. Cheryl. cocojo86@yahoo.com


Roger G, August 18, 2005 - Hi everyone, A note on LVADs. See www.wral.com/health/4863472/detail.html. rogergthree@earthlink.net


Jon, August 20, 2005 - Hi everyone, Well, my PCP says he's seen my problem recently in some other patients and it knocks even healthy people back hard enough to cost them their jobs at times. He calls it a "sub-acute immunological syndrome" that causes a whole slew of symptoms, most of which I have. He has run a bunch of tests and is waiting for the results. Then, he'll call me with the results and probably order at least one more set of bloodwork before treatment, to be sure he's on track. Anyhow, it's one of those wonderful conditions that doesn't cause further heart damage but aggravates my CHF as well as other existing conditions. Jon.


Jon, August 20, 2005 - Hi all, I really hate to post things like this but have to do so. Our donations for this month are the lowest - by far - for any month in the last 3 years! If you can spare some change, please consider donating. See chfpatients.com/about.htm for how to donate. Thanks, Jon.


Gene G, August 20, 2005 - Hi Jon, I just stumbled across this on the FDA web site. See www.fda.gov/medwatch/SAFETY/2005/natrecor2_DHCP.htm. I also checked your section on IV drugs and saw the mention there of this from an article in the journal Circulation. I don't know if this FDA letter contains any new info. Best wishes, Gene. gene.goorchenko@genzyme.com


LaKeisha J, August 20, 2005 - Hi, My mother has CHF and I was wondering how I could help her regarding eating healthier. rvjones2@aol.com


Kevin F, August 20, 2005 - Hi, My name is Kevin. This is my first time on the site. I have CHF, COPD, emphysema, chronic bronchitis and sleep apnea. I am 41 years old and married with 7 children, one granddaughter and one grandson on the way. I am unemployed and depressed a lot of the time because of my condition. However, I am grateful that a lady who frequents this site gave the information to my wife so now I have the opportunity to speak with others that understand my condition.
     I am in and out of the hospital so most of the time I don't do much of anything. Now I will have something to read and hopefully find information that can help me and my family. I have been denied Social Security no less than 5 times. Oh well, that's my story for now. Mmab60@aol.com


Jon, August 20, 2005 - Hi everybody, I was told about a new twist on the MedicAlert bracelet principle, and would like your opinions on it. See http://www.medictag.com/. It plugs into a USB port on your computer for you to fill in your medical information and then in an emergency, responders can plug it into a USB port on their laptop, assuming they have one. Opinions welcome, since I really can't decide how this stacks up versus the old fashioned wallet card I carry. Jon.


Cheryl C's August 21 reply to Jon's August 20, 2005 - Hi Jon (and everyone else), I looked at the Medic Tag information and it sounds interesting to me. I wasn't sure what the cost of the device is, but assuming that a person is carrying or using their keys, it would command immediate attention. I can't wear the medic bracelets because of an allergy to most metals, so my solution was to type my information on the computer, print it, and laminate it. I made 2 copies and put one in my billfold and one in another spot in my purse. Either could be easily found if I wasn't separated from my purse. Whenever I'm out anywhere, I have it with me so I thought that would be safe. If the cost of this MedicTag isn't too high, it may be an extra assurance that the infomation would be readily available to medical personnel in the event that I couldn't tell them myself. My husband would never be able to remember all the vital infomation. Just one opinion. Cheryl. cocojo86@yahoo.com


Roger G's August 21 reply to Jon's August 20, 2005 - Hi Jon, The USB tag looks like fun but I would wonder if any emergency (ambulance) crew has a USB cable in their back pocket or if a hospital emergency room has the correct cable since I have three different ones for my computer and cameras. I prefer the good old tag with a phone number on it. I also see Word is a required program. Will the ER or EMT have Word on their PC? rogergthree@earthlink.net


Norma L's August 21 reply to Jon's August 20, 2005 - Hi, I ask my doctor and my pharmacist about a medic alert, or personal identification, because I walk a lot and would think that if anything should happen to me, people would not know I have a medical record. How would they know what to give me in case of an emergency? They both seemed to indicate that there was none needed. I guess I am pretty average, except I take certain medicines that might interfere with others.
     I like this new gadget, I am tempted to get it for my own peace of mind. I am uneasy knowing that things do happen to some one out on the public roads! I go about 4 to 6 miles out from my home. Thanks for such a wealth of information! nvl@pennswoods.net


Cheryl C's August 21 reply to LaKeisha J's August 20, 2005 - Hi LaKeisha, As a new member of this board that asked the same question about eating only a couple of months ago, here's what I've found: Don't use anything canned or boxed. Forget condiments (ketchup, mustard, pickles, mayonnaise, etc) and cheese. Check the labels of everything because there are some real surprises out there in the amount of sodium in different items. The 4 cookbooks that I bought have been a godsend in helping me plan and eat low sodium, healthy items. They are all available through Barnes and Noble online. Their names are "Low-Salt Cookbook," "No-Salt Cookbook," "No-Salt, Lowest-Sodium Cookbook," and "Healthy Heart Cookbook." There is some great eating in these. Good luck. Cheryl. cocojo86@yahoo.com


Donna V, August 21, 2005 - Hello all, I just had an e-mail from our friend Pat. She and family have relocated to Arizona while she fights infections and awaits a transplant. She requested more prayers as her husband had a massive heart attack yesterday. E-mail me if you want their new e-mail address. Donna V. dmvditty@aol.com


Bob, August 21, 2005 - Hi, I have to start dialysis. I lost a kidney to cancer in 1998 and the high blood pressure for many years has ruined the last one. I have been told that if you have CHF you are not eligible to receive a kidney transplant since EF must be 50% or better. I am curious if there is anyone else on dialysis and how they cope. I have severe depression and PTSD bad, this might knock me out of the game. I have no quality of life and no family, it is so very hard. Thanks. bobby010nyc@aol.com


Jacky B, August 21, 2005 - Hi Jon, Sorry the donations have not been very good this month. I am donating a little more this month in memory of a good man, a cyber-friend from another board named Steve (Gain). I am not sure if he ever posted on this board but I know he would approve of the donation. He was very kind to me as to everyone, via e-mail. He died suddenly a couple of weeks after major surgery for an aneurysm and although he had been very ill for some time, it was a shock to all his friends on the web as we thought he was recovering. Steve, I will "keep smilin." Jacky. jackymwb@earthlink.net


John M, August 21, 2005 - Hello all, I have a problem with drinking too much fluid in a day. I feel thirsty all the time (not medicine related). I just always tend to buy 32 to 44 oz drinks and several a day. Does anyone have any suggestions on how to lower fluid intake without feeling dry and dehydrated? Thanks! l.e.mccoy@att.net


Evan M, August 21, 2005 - Please, I need help. The woman I love is in dire need. She is a single mother of 2 boys, recently unemployed, and has a heart condition. She won't tell me more about her condition because she doesn't want me to worry. All she'll tell me is that if she can't get a new heart, she may die within the next couple of years. Neither I, she, or any of her family have the funds or resources to get her the operation she needs. She's already lost one brother to this same condition. AdultSwimDude79@aol.com


Cathy D, August 21, 2005 - Hi all, My 48 year old husband has restrictive cardiomyopathy from sarcoidosis, with right heart failure and pulmonary hypertension. He is on the usual array of meds (lisinopril, digoxin, Coreg, Lasix, prednisone, etc.) He has been on and off oxygen several times in the past 2 years. Believe it or not, he manages to work part-time, although he is very fatigued and short of breath. Lately his edema has been hard to control and I think he doesn't look as well. His doctors are aware and involved, testing, etc.
     I've been planning a great vacation for next summer, our 25th anniversary. We decided it would be great to see something of the West, so we have planned to spend a week at Yellowstone National Park. We live at about 3000 feet above sea level. Yellowstone is at about 7,500 feet, with surrounding elevations up to 11,000 feet.
     Now that I've started really researching it, I'm wondering if my hubby is really up to this. I'm reading about high altitude sickness and it seems to me, he's already having a lot of those symptoms! I knew he would not be able to go hiking or anything strenuous, but it never occured to me that this trip mnight be off limits altogether. He sees his doctor again Thursday and I plan to bring it up. In the meantime, what do ya'll think? georgecd@worldnet.att.net


Myrtle C, August 21, 2005 - Hi everyone, I believe that obsessive complusive disorder is more prevalent than most realize. It can become a serious problem. There are meds for it as it is a problem with the chemicals in the brain. Get some help from your doctor if you need it, and if your regular doctor blows it off you can go to a psychiatrist. This can be progessive. omieof3@yahoo.com


Elizabeth K's August 22 reply to John M's August 21, 2005 - Hi John, Fellow liquid lover here. After my MI in October of 2003 I missed the liquids as much as the foods. Two tricks helped. First, bowls of shaved ice with flavored syrups (grown up snowcones) and secondly, big piles of lettuce, lettuce being mostly water. Ice chips seem to last longer and you get quite a pile of ice to nibble for a small amount of water. Lots of lettuce seemed to hold the after lunch and dinner thirst at bay. Low sodium is a big advantage in controlling thirst as well. The good news is that we seem to adapt. Also, strict adherence can sometimes reward you with enough improvement for a little extra latitude over time. WmOccam@aol.com


Michelle A's August 22 reply to John M's August 21, 2005 - Hi John, My biggest problem when I first got sick was sticking to my fluid restriction. I used to drink almost 2 gallons of water a day, so quitting that was hard. Over the last 2 years, my tolerance for fluids had decreased and my current restriction is 4 cups. I get in big trouble if I drink more than that.
     I often feel very thirsty, but things that have helped me include sucking on ice chips, sucking on hard candy, putting lemons in my water (and lemon juice in ice cubes) so I feel satisfied faster, sipping very cold drinks, and using tiny drinking glasses. I keep a small plastic cup in my freezer and freeze what I want to drink. Drinking small amounts of mostly frozen or slushy drinks helps me a lot, but what has helped the most has been eating fruits and veggies that contain a lot of water. I eat lots of celery, cherry tomatoes and berries because they satisfy my thirst.
     It took some time to train myself to drink less. Experiment and see what works for you. Doing it gradually will help those feelings of dehydration. Good luck to you. miship@hotmail.com


Norma L's August 22 reply to John M's August 21, 2005 - Hi John, I have the same problem because it used to be, and still is, that every diet advises you to drink a lot of water. I have found to suck on ice cubes helps and also just take sips of water, or whatever. I used to down an 8 oz glass of water several times a day, but had to change my way of living! I walk a lot and am concerned about getting dehydrated. Nvl@pennswoods.net


Tony M, August 22, 2005 - Hey, I would like to add that in England, paramedics came up with the idea that people with cell phones put the letters I.C.E. in your cell phone's address with numbers to call in your emergency if you are unable to speak. It stands for "in case of emergency." The newscast said it would be a world wide standard for all paramedics to look for in your phone. On my phone I listed about 5 ICE numbers starting with my wife's cell phone number, her work number, my doctor's number, and so on. It's a good idea too. Tony M. ynotmyrick@yahoo.com


Scott B's August 22 reply to Cathy D's August 21, 2005 - Hi Cathy, There are many variables. Off the top of my head, you should consider: The impact of the altitude on your husband's symptoms; The types of activities you are planning to do; The capabilities of your husband; Proximity to emergency services (for safety). scott.brown@rogers.com


Roger G, August 23, 2005 - Hi all, Has anyone tried the sleeping med Lunesta? I can't take Ambien since it makes me do strange things in my sleep. I ask as I sit here at almost midnight thanks again to Mr. Coreg Insomnia. If you take Lunesta, have you noticed any side effects? How do you feel in the morning? Do you get to sleep quickly? Thanks all! rogergthree@earthlink.net


Valerie R, August 23, 2005 - Hi Everyone, My doctor hasn't restricted my liquid because he is afraid I'll dehydrate, but I do watch it and except for 8 to 16 oz of coffee, all I drink is water. I am also an ice addict. This worked wonderfully for me this summer. I was in Vegas during its hot spell (121° F). In the casinos (I like slots) when the cocktail girl came around, I'd ask for a glass of ice. Not once did anyone say anything about that.
     I also learned that when a few of my meds say "avoid excessive sun," it's for real. I went tubing down the Guadalope River for two hours and really burned even though I wore a shirt and most of the river was shaded. Fortunately, there's an aloe lotion with lanocaine. Regular aloe works well too. vgrogers@aol.com


Roger H's August 24 reply to Cheryl C's August 24, 2005 - Hi Cheryl, You had a good list but there is a no salt ketchup with zero sodium. My wife likes that better than the regular for taste. There is Hains Eggless mayo too, with zero sodium and can be used anywhere regular mayo is used. There is Lorraine swiss cheese with 15 mg sodium per oz. It is like you said though, read the labels. Some of this might not be available in your area. rkharmony@highstream.net


Gene G's August 24 reply to Roger G's August 23, 2005 - Hi Roger, I checked out the FDA-approved product labeling at lunesta.com and saw that their clinical trials did not include any people with cardiomyopathy or CHF. I happened into one of the pharmaceutical reps for the product, and he confirmed that the company has not done such a study. I understand that it has a different mode of action than other sleep medications, but I have no idea of its side effects on people with CHF. gene.goorchenko@genzyme.com


Lowell P, August 24, 2005 - Hi, My doc has lowered my diuretic (Lasix) from 40mg every day to 40mg every other day. This has not affected my weight so I am assuming that I can get by like this. My question Jon, is if I were to reduce the Lasix dose even further - to say every third day - with still no change in weight or symptoms, could I be confident that every third day is sufficient? Another question, I have a friend who's wife takes Lasix but no potassium supplements. I thought that it was important to take potassium with a diuretic. Thanks, Lowell. Lpepper3m@aol.com


Jon's August 24 reply to Lowell P's August 24, 2005 - Hi Lowell, Diuretics are given to reduce symptoms so if you're not having symptoms you don't need the diuretic. Since loop diuretics like Lasix make you tired if you take them but don't need them, it may be a good idea to see what basic dose works for you.
     The only way to know how much potassium to take with your diuretic is to have blood testing done, then adjust the potassium dose until your levels are correct while on a given diuretic dose. If she is not having her blood tested for electrolyte levels, she may be in trouble not taking potassium. It is the only way to know. For what it's worth, if you take a loop diuretic like Lasix, you should also take low-dose magnesium, either magnesium aspartate, gluconate, sulfate, or citrate - not magnesium oxide, chloride, or carbonate. Jon.


Jack D's August 25 reply to Lowell P's August 24, 2005 - Hi Lowell, I take Lasix, torsemide, and Edecrin. I have never taken potassium. My potassium levels have always been dead center normal except when a hospital doctor decided I needed to add a potassium-sparing diuretic to my regimen. When I did this, my potassium skyrocketed and I had to eat massive does of this stuff that looked like and tasted like dirt twice a day for a week to suck all the extra potassium out of my system. Different metabolisms have different responses. maddjak@hotmail.com


Jennifer G's August 25 reply to Cathy D's August 21, 2005 - Hi Cathy, My husband and I went to Colorado twice before I ever knew I was suffering from CHF symptoms. Both times I had to adjust to the feeling of not getting enough oxygen. I followed the locals' advice on drinking more water to get more oxygen molecules in my system. We flew both times so I ended up feeling very dehydrated and drinking even more water. On the second trip, by the time we arrived at the hotel, my feet and lower legs looked and felt twice their size.
     I loved Durango (first trip) and Denver (second trip), but always felt it would have been so much more enjoyable if I had known I needed to expect and plan for obstacles caused by CHF. I would still have gone, but I would have made it a point to move around more in the cabin of the plane, restrict caffeine more and sodium a lot more, pace myself, and spread the activities out better with more time for rest in between.
     Not knowing my limitations, I tried to keep up with my husband (who also didn't know I was overdoing it) and wound up exhausted with daily migraines and coming home with a raging case of bronchitis that kept recurring until I ended up in the hospital with pulmonary edema. I am now on Lasix, Coreg and Lanoxin and I think that if we took the trip today I would do much better if I stayed on schedule with the medications, got rest, and watched my salt and water intake.
     As a side note, I know the altitude had a lot to do with it. A trip to San Diego the summer before didn't give me nearly as many problems but I could still tell that I was having some difficulties that I shouldn't be having as a supposedly healthy woman in my 30s. Jennifer. jennifer@doublegates.com


Jennifer G's August 25 reply to Lowell P's August 24, 2005 - Hi Lowell, Do you also take Lanoxin with the Lasix? I believe that the Lanoxin family of medications and the diuretics increase the potency of each other. I've been under the assumption that potassium is still very necessary with any dose of Lasix if Lanoxin is being prescribed as well. Is that right, Jon? Please let me know if my information is wrong. Thanks, Jennifer. jennifer@doublegates.com
 
Jon's note: Like Jack emphasized, blood testing is the only way to know. Doctors should never automatically give potassium with diuretics nor assume potassium is not needed. Do the blood work and know for sure.


Susan B's August 27 reply to Cathy D's August 21, 2005 - Hi Cathy, We went to Crested Butte, Colorado, and the Grand Canyon last summer. My husband has DCM. He was doing very well at the time. We traveled from Kansas City to the Grand Canyon by train and then we went by car to Colorado. My husband did not have any health problems on the two week trip. He did take his time and rested when he felt like it. We checked with his doctors before going and we bought trip insurance to bring him back home if he had any problems(check about waving pre-existing conditions and having your doctor's statement that he is in stable condition at the time you purchase the tickets. Good luck with your trip. Susan B. gbratcher@kc.rr.com


Norma L's August 27 reply to Jennifer G's August 25, 2005 - Hi, My doctor was checking my blood every 2 weeks to control my potassium level, I think, because he was checking something with a "k" in it. I have to take a potassium pill every day, I get terrific leg cramps if I don't! nvl@pennswoods.net


Karen K's August 27 reply to Jennifer G's August 25, 2005 - Hi Jennifer, I am a case in point regarding the potassium. I take 40 mg of Lasix on Monday, Wednesday, Friday, and Sunday. On Tuesday, Thursday, Saturday, and Sunday, I take 12.5 mg of spironolactone. For quite awhile my potassium levels were quite high but have now appear to be in the normal range. I haven't had a banana or orange juice for a year, literally. Karen. karenk@machlink.com


Cheryl C's August 27 reply to Roger H's August 24, 2005 - Hi Roger, I have gotten a No Salt Added ketchup by Heinz and it tastes pretty good. The only problem is that it contains potassium cloride instead of salt and because of the spironolactone I'm supposed to watch my potassium intake. I found a great recipe and made some ketchup myself - I really prefer it. I'll send the recipe in if anyone would like me to. I found some great Swiss Gouda that's only 55 mg of sodium per once at New Frontiers Health Food Store. It doesn't appear to be available all the time.
     I haven't tried the Hain Mayonaise yet because I would also have to order that from Minnesota, like the ketchup. Unfortunately, there really isn't much available on the central coast of California in our area. Trader Joe's and New Frontier Health Food Store both have very limited items. Consequently I've made my own ketchup, yellow mustard, and soy substitute. My mayo so far stinks! At least I couldn't eat it. <g>
     My goal is to educate the public and manufacturers of our plight. I'm sort of tired of going into a grocery store that has only about 1% of their items suitable to my diet. Cheryl. cocojo86@yahoo.com


Carol R, August 27, 2005 - Hi Jon, I have been reading your site off and on ever since last year. My mom was diagnosed with CHF in October of last year when I first took her to the emergency room. Since then she's been hospitalized about four times, once again in October of 2004, then January of 2005, August 14th of 2005, and now she's back in today, all from fluid build up which makes her feet look like pig paws and of course she gets shortness of breath.
     I have noticed that she's not weighing herself daily and whenever she has to go to a doctor's appointment or take her car to the shop, she won't take her Lasix until the evening as opposed to twice daily (40mg each time). I'm wondering if that is contributing to her fluid buildup which is landing her in the hospital. This is all new to me. I want to help her stay out of the hospital because it's really frustrating for her. She's 83 and has always been in good health until 2003 when she had open-heart surgery (she was a smoker for over 40 years).
     After her last hospitalization, she was tried on Coreg (I forget the dosage but I have it written down) and the side effects knocked her out. She was also put on Aldactone and Benzadone. Like I said, the side effects were horrendous. She was so dizzy and faint-feeling, it was all she could do to get out of the chair, and the fluid build-up returned plus she developed shortness of breath from just walking 10 feet.
     Has someone had similar experiences? Yes, I will be talking to her doctors and asking their advice. Thanking you in advance, Carol. carolrptr@comcast.net


Dana W, August 29, 2005 - Hi, I'm new to this site. I was diagnosed with CHF 5 years ago after giving birth to my last child (postpartum cardiomyopathy). I was 42 at the time. Initially my EF was 35%, then for a couple of years it went up to 50%. In the past three years it has gone from 40 back to 35% for 2 successive years. What does this mean? Has anyone had any similar findings with their echos? weberharvey@shaw.ca


Gayle A's August 29 reply to Kathy D's August 21, 2005 - Hi, My husband has CHF and we went to Colorado this past summer. Our strategy was to elevate very slowly. We live in Texas just a little above sea level. We drove and took four days to get to our destination at 8700 feet. We went to 3000 and stayed the night, then 4500 and stayed the night, then 6000, then finally 8700. He was very activity-intolerant and could do nothing much but sit the first week - but he was in Colorado and was thus happy.
     I would say that it will be hard on your husband and that he will have to take it very easy, rest more than usual, drink plenty of fluids, and he will be more short of breath just walking. My hubby says it was worth it though and he plans to go back next summer. turqpot@hotmail.com


Dennis F, August 29, 2005 - Hi, I was diagnosed with heart failure in addition to my long standing (30 years) atrial fibrillation (familial) in June of 2004. My heart is enlarged but until recently, this was not thought to be a problem since I have been pretty athletic. I am 61 and frequently get significant shortness of breath after walking up my stairs after a meal and usually sit down for 10 seconds or so since the symnptoms got more severe on one occassion and I had to call an ambulance.
     I have given up even doubles tennis, along with automobile racing. My ejection fraction ran from 19 to 27% last year to 26% in June of 2005 but the atrial fibrillation had caused some low EF readings before the shortness of breath symptoms on reclining that led to the heart failure diagnosis about a year ago. I had a rapid heart rate when diagnosed since the Veterans' Administration had stopped sending my heart medicine in 2003, so the doctors think the rapid heart rate may have precipitated the failure.
     I am now on the beta-blocker Coreg at 25 mg BID, the ACE inhibitor Lisinopril at 10 mg daily, a potassium sparing diuretic, Inspra, aspirin at 81 mg, Coumadin at 7.5 to 10 mg daily, Synthroid at 0.025 mg, fish oil, CoQ10 at 120 mg, acetyl carnitine at 750 mg, Actifed for sinus condition, and DHEA at 50 mg. I try to restrict my salt to 2 g daily as advised and my water to 1.5 liters also.
     I am still operating the bookmobile for the local library full-time and get pretty tired most days but the activity should be good for me. I have a sweet tooth but have switched to Splenda-sweetened ice cream and use Stevia and Splenda in my green tea and limit soda intake to one or two per week. I now avoid sugar as much as possible but have some chocolate daily and often a small piece or two of hard candy after meals.
     My cardiologist isn't into nutrients but I ordered some taurine and more carnitine today and am trying 3 mg daily of the ribose that Dr. Julian Whitaker recommends in one of his recent letters.
     My cardiologist, a heart failure specialist, said I should get an ICD due to the results of the SCDHeFT study that was published in January in the NEJM. The ICDs showed a decreased mortality from the 28% to 29% range to 22%, what they called a "relative" decrease of 23%. The benefits were for those with class 2 heart failure but even though my doc calls mine class 2, it may be more on the border between class 2 and 3, depending on how one defines slight and marked. I've made an appointment with a VA cardiologist to get a second opinion and more specifics on the ICD.
     Thanks for any suggestions! Dennis Fink, ex-Air Force pilot and science teacher from Reading, PA. dfink12@comcast.net


Tina A's August 29 reply to John M's August 21, 2005 - Hi John, I have been eating tons of ice cold watermelon when I am thirsty. It helps take the thirst away and is good for my diet as it is low in sodium and all natural. tarndt@indy.rr.com


Tom S' August 29 reply to Carol R's August 27, 2005 - Hi Carol, It is my firm conviction that after enduring CHF for more than 10 years and now entering what probably is the final phases of the disease, that nothing is terribly predictable - that dedication to medication is very important and that you can't wish your way to vigor.
     I assure you that if a doctor put a cast on your mother's arm for a broken arm, she wouldn't remove it because she didn't like it. She needs to treat her meds schedule with the same type of attachment. It may not change the course of the disease but it certainly makes it easier to cope with it. It also lessens the number of trips to the hospital.
     I am currently at an EF of about 5 to 10% and have problems with fluid build up. I rest when I notice my ankles swelling and I am religious about taking my rather huge dose of Lasix every day. I also have learned that it is best taken prior to consuming any type of food. I usually take my pills well before breakfast and dinner, which consists of 160 mg of Lasix twice a day, and another fistful of pills including potassium. bigheart@muchomail.com


Tina A, August 29, 2005 - Hi everyone, I just happened along to this web page and have found it incredibly informative and educating. Thanks Jon, for doing such a great job. I am 35 and developed PPCM and CHF resulting from my last pregnancy. It still bothers me to say my "last pregnancy" as it has to be my last due the damage to my heart and I so want to have more children. I am down to 20% EF. Our daughter was born with Rhabdomyosarcoma, an incurable and very rarely treatable form of cancer. She was born July 20th and died August 14th.
     The last 2 months have been hell on earth. I nearly died twice with the CHF and then we got Abby's diagnosis. They said to limit my stress to help with the CHF. How is that remotely possible when the other set of doctors then tells me to take my infant home and watch her die? Not to mention I have twin boys that are 17 months old that like to climb on everything. Given the above, I do have some depression issues but they are mild and thus far related mainly to grief caused from losing my child and the ability to bear more children all in the same month.
     I am on Coreg at 25mg BID, 10mg lisinopril, and 20mg Lasix daily. My first doctor in Indianapolis said I would be on meds for life and the doctor they transferred me to in my home town said he expected me to make a full recovery by this December. I have no idea which one is more realistic. Any ideas?
     I also need any info on good ways to change my diet as I currently weigh 240 and the new doctor said he would like me to get to the 150 to 160 lb range. I am limiting my sodium to 2000 mg per day as ordered and eating a lot more fruits and vegetables as they are in season. I am having trouble changing my recipes to lower fat and changing my cooking style.
     I am lucky in that my only current side effects from the Coreg that I have had is that it makes me very tired. I want to fall asleep all the time when I need to be watching the twins and keeping them out of trouble. Has anyone elase had this problem and how do you deal with it? Any help with my several issues would be greatly appreciated. tarndt@indy.rr.com


Kathy C, August 29, 2005 - Hi everyone. Please and I mean please, ask your doctor all the questions you want even if it seems silly to you - or if they make it seem silly. My granddaughter was born with transposition of the great arteries with VSD and many other malformations. They did open heart surgery, which was successful.
     My daughter brought her back for her checkups after surgeries and at the last doctor visit she went to one and half weeks before my little Arianna passed away, the doctor noticed a heart murmur. She did nothing for my granddaughter, knowing she had major open heart surgery 3 weeks before. My daughter driving home from visiting a relative, first she put her pretty baby in her car seat and kissed her and told her she loved her and told her she was so pretty. The 15 minute drive home would be little Arianna's last drive in her car seat. She died in her car seat from an enlarged heart, which I do believe was caused from that heart murmur the doctor heard.
     Maybe something was wrong and she needed to get help - maybe a second surgery? She did absolutely nothing. We did not ask the question why and what are you going to do about it? Even though the doctor said she will grow out of it. What was she thinking? She went through 5 hours of open heart surgery on bypass at the age of 2 weeks. My precious granddaughter could not talk to tell us she was feeling strange and hurting. Maybe a holter moniter would have helped also.
     Just ask questions, please, because your kids as babies cannot. They can't tell you how they are feeling. Ask those questions even if they seem dumb. Maybe if I had, my granddaughter would still be alive. I should have demanded a test be done on her. Could have, should haves - so please don't be where we are today.
     Arianna died at 7 weeks of age. She was born on May 20, 2005 and went to be with Jesus on July 7, 2005. All we can say is what we could have done instead of what we did, everything possibly for her and Arianna just died from her broken heart. Sincerely, Kathy C. maecummings@cox.net


Jack D's August 31 reply to Tina A's August 29, 2005 - I can't believe Jon let this post slip by without a comment. Eating watermelon isn't a method for reducing your fluid intake. Watermelon is 92% water, so stuffing yourself with watermelon is the equivalent of sucking on a water hose. Dangerous advice. maddjak@hotmail.com


Joseph S, August 31, 2005 - Hi, I was hit by lighting and it knocked the electricity out of my body. Now I have a Guidant device implanted (pacemaker) which can be controlled by a small computer with a telephone. All I have to do is dial a number and they can turn the device up or down. My feet keep swelling by the end of the day and by morning they go back down. Could this be caused from my heart? rjstrob@aol.com


A J, August 31, 2005 - Hi, Does CHF significantly complicate colds or the flu? ajf@cableone.net
 
Jon's note: Please always use a name, not initials, when posting. Thanks!


Jon, August 31, 2005 - Hi everyone, I just want to thank everyone who donated to CHFpatients.com this month. It was by far the slowest month for donations in our existence but I got to thinking what dire straits we'd be in without the donations we did receive and instead of feeling desperate, I got to feeling thankful. Thank you and hang in there, CHFers! Jon.


Cheryl C, August 31, 2005 - Hi everybody, Just to put in my 2 cents about the fluid intake discussion that is going on, I agree with Jack. My cardiologist told me that I need to count the fluid amount in all fruit as part of my 2 liters of daily liquid. Just how you are supposed to calculate this I'm not sure, so my solution has been to also limit my fruit intake daily. If anyone knows how much liquid is in an apple or pear, please let me know. <g> Cheryl. cocojo86@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, 2005 Jon C.

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