The paperwork never ends The Archives
Loved Ones - February, 2001 Archive Index

Sharyn 2-2     seek experience of others
Julie 2-3     really need some help here
Mary 2-3     end-stage CHF question
Joanne C's 2-5 reply to Jane's 1-31     losing weight, attitude, and CHF
Jon's 2-5 reply to Jane's 1-31     losing weight, perspectives, experience
Paula B's 2-5 reply to Julie's 2-3     coping
Patricia 2-6     weight loss, is this the end? & more
Katie's 2-6 reply to Mary's 2-3     end-stage CHF experience
Sharon 2-6     intro, tough adjustments to make
Nadine S 2-7     worried about my husband's future - questions
Van 2-7     seek pacemaker advice, info
Beth C's 2-8 reply to Nadine's 2-7     coping
Patricia 2-8     what causes cardiac cachexia?
Jon's 2-8 reply to Patricia's 2-8     cardiac cachexia
Vicki 2-8     seek low sodium food tips, thanks
Monica 2-8     should mom's digoxin level be checked?
Jon's 2-8 reply to Monica's 2-8     yes
Katie's 2-8 reply to Nadine's 2-7     coping
Karen P 2-8     update, what is "smoke" on an echo?
Karen P 2-8     what I mean is, how sick is he?
Jon 2-8     new feature to site being added
Davida's 2-9 reply to Julie's 2-3     there are wives who understand
Davida's 2-9 reply to Vicki's 2-8     low sodium product brand names
Suzy C 2-9     need help with husband's eating habits
Annie G's 2-10 reply to Vicki's 2-8     adjusting to low sodium eating
Cal 2-12     intro, meds side effects & pacemaker questions
Jon's 2-12 reply to Cal's 2-12     meds side effects, pacemaker
Ellen's 2-12 reply to Suzy C's 2-9     husbands not eating right is frustrating
Indiana 2-12     seek others with end-stage renal disease & more
Jon's 2-12 reply to Indiana's 2-12     about the "& more"
Suzy C's 2-13 reply to Ellen's 2-12     thank you for the reply! & more
Bill D's 2-13 reply to Cal's 2-12     finding CHF info & more
Shannon T's 2-13 reply to Karen P's 2-8     that "swirling smoke"
Cal's 2-13 reply to Jon's 2-12     thanks, update, & more
Annie G 2-13     diet change tips, Coreg & diabetes question
Dana J 2-14     seek financial assistance sources
Laura 2-15     husband recovers - what about meds?
Jon's 2-15 reply to Laura's 2-15     meds after heart function recovers
Karen P 2-15     really low EF versus symptoms questions
Jon's 2-15 reply to Karen P's 2-15     really low EF versus symptoms
Lee R's 2-15 reply to Dana J's 2-14     financial assistance
Sheila S 2-15     uncertain about mom in law's health
Jon's 2-15 reply to Sheila S' 2-15     one opinion
Vicki 2-15     question about sleep apnea & CHF
Jon's 2-15 reply to Vicki's 2-15     sleep apnea and CHF
Suzy C's 2-15 reply to Annie G's 2-13     low sodium cooking & eating habits
Davida S' 2-16 reply to Karen P's 2-15     low EF experience & more
Ken 2-16     how does BP relate to heart function?
Jon's 2-16 reply to Ken's 2-16     some Urls to get you started
Bill D's 2-16 reply to Ken's 2-16     high blood pressure
Davida S' 2-17 reply to Nadine S' 2-7     coping
Carolyn S 2-17     update, thanks, melatonin & more
Jon's 2-17 reply to Carolyn S' 2-17     thanks, melatonin warning
Gus R's 2-17 reply to Dana J's 2-14     financial assistance possibilities
Dana J 2-20     thank you for info
Suzy C 2-20     SSD experience
Mary T 2-20     how do we handle low BP & more?
Carolyn S' 2-20 reply to Jon's 2-17     melatonin's effects
Sharon 2-20     seek Florida CHF doc & more
Yvette's 2-20 reply to Vicki's 2-15     sleep apnea
Autumn's 2-20 reply to Carolyn's 2-17     herbs and supplements
Karen D's 2-21 reply to Sharon's 2-20     finding a CHF specialist
Cheryl 2-21     seek advice before talking to docs about mom
Mary Lou's 2-21 reply to Cheryl's 2-21     some starting out tips
Roxanne P 2-21     my mom Jill died
Cathy 2-22     seek info on potassium & more
Beth C 2-23     headaches, blood presure, meds - questions
Jon's 2-23 reply to Beth C's 2-23     headaches and meds
Sharon 2-26     update, has anyone tried alternative?
Emily 2-26     mom's lungs bad, any ideas?
Jon's 2-26 reply to Emily's 2-26     I don't know
Todd K 2-26     can Primacor be given IV more often?
Dana J's 2-27 reply to Beth's 2-23     toprol experience & headaches

Sharyn, February 2, 2001 - Hi, I am posting for my mom. She has CHF and is having valve repair on 2/8. She is having the surgery done in Cleveland (we live in Chicago) at the Cleveland Heart Clinic by Dr. Cosgrove. It will be done minimally invasive. Her mitral valve is completely insufficient (it is a 4) and her bicuspid valve also needs repair. I am trying to give her as much support as I can but let's face it, I don't have any clue as to what she should expect.
     Is there anyone who has had this type of surgery who can tell me what she can expect? She is terrified and I don't blame her, major surgery is scary. The unknown factor is always the worst. Her biggest fear is that she will get some sort of complication after surgery. I know that her fears are all normal and typical but if she could have some idea of what to expect from someone who has been there and done that, it might help her. Thank you, Sharyn Friedman, NW Burbs of Chicago.

Julie, February 3, 2001 - Hi, My husband was diagnosed with CHF back in November of 2000. He is currently in a medical facility about 140 miles from our home. He has been there since December 28, 2000. He was so near death when he was admitted that the doctor, who had the misfortune of explaining it to me, had tears in her eyes as so told me the news.
     Moving ahead a few days, he was subsequently put on an LVAD. After that, he had to go back in for 4 more open heart surgeries due to bleeding complications, and the LVAD had to be removed. He has now been there for 5 weeks and is still under heavy sedation and on a ventilator. His kidneys have completely failed and I was told today that he may never mentally recover (there was talk of strokes but so far they have been unable to determine that for sure.
     My husband is 38 years old and we just got married in June of 2000. I am beginning to feel myself losing the ability to cope with the uncertainty of his future. We know for sure he will never leave the hospital without a heart transplant but we don't know if he'll ever be healthy enough to survive one. He was listed as a critical one-A on the transplant list but recently had to be removed due to the other problems he's having. I'm just really scared and need help. Thanks, Julie.

Mary, February 3, 2001 - Hi, My father has end-stage CHF. Does anyone know of a patient who has lived for awhile in end-stage?

Joanne C's February 5 reply to Jane's January 31, 2001 - Hi Jane, I know your husband is stressed. I am stressed and I have no demands on me. I was 108 pounds when I went into heart failure after a heart attack. I feel sorry for myself occasionally (ok, quite often) and occasionally take it out in sodium. I cannot imagine going through this mess with an MD telling me to lose weight. When I overdo the salt, my husband tells me with a look or raised eyebrows and that is almost too much to stand. Try to go easy on him. Encourage him when he is compliant but don't be too hard on him when he is not. It is hard to find something to strike out against when your body is failing you. Sometimes it feels like the diet is the only enemy you can punish with a clear almost conscience. Joanne.

Jon's February 5 reply to Jane's January 31, 2001 - Hi Jane, I agree with Joanne that you should not be too hard on your husband. It simply won't help him lose weight so why add more stress. However, remember that Joanne is not overweight so she has a different perspective. If you need to lose weight, you need to lose weight. The trick is to figure out how to realistically help your husband do so. On that, I don't have a clue. Everyone responds differently to the actions of loved ones. However, prayer always helps. That I know beyond doubt from personal experience giving up addictions of my own. What is overeating but an addiction? Keep praying! Jon.

Paula B's February 5 reply to Julie's February 3, 2001 - Dear Julie, I am so sorry to hear that about your husband. He will be in my thoughts and prayers. I pray that he will be okay. I know what it is like to have a loved one be sick with this disease. I have a 3 year old son who has dilated cardiomyopathy and CHF. He is also on the transplant list. I know all the physical pain and emotions you are going through. Stay strong and focus on him getting well. If you need someone to talk to, please e-mail me, Paula.

Patricia, February 6, 2001 - Hi, My father in law was diagnosed with congestive heart disease about 6 months ago. He also has emphyzema. He has been experiencing a significant loss of body weight and muscle mass; from 132 to 117 pounds in about 4 months. What does this mean? He also spends most of his time sleeping. Is he in the last stages? What are the questions we should be asking? My mother in law said the doctor said that the weight loss is due to the body getting rid of what it can't support. He also is swelling in the feet.

Katie's February 6 reply to Mary's February 3, 2001 - Hi Barb, I agree everyone's end-stage is different. For some it comes in days and others over years. However, it does come and you are never ready. You can't change it but you can prepare yourself. Reach out to your loved one, help them make peace in their life, let them know how much you love them even when they are having a bad attitude day, and assist in their care. Have hope for a miracle.
     My husband was diagnosed with cardiomyopathy 8 years ago. The doctors told him he was a good candidate for heart transplant. He went through all the stages and progressively got worse. Two years ago they said he was end-stage and progressively got worse. He finally got to the point where walking to the bathroom or talking took too much effort, and he was hospitalized in September.
     His care over the 8 years progressively increased. At first medications were adjusted and he saw the cardiologist every 3 months, then every 6 months when he stabilized. Then vists started being closer together again. When September 2000 came, he was seeing  the cardiologist once a week, the home health nurse twice a week, and was on continuous home IV medication for a year. In October of 2000 he received an artificial heart.
     This was our experience with end-stage CHF. He lost the battle in November of 2000. I always wondered what is the end-stage, will we be taken by surprise one night and that would be the end? There were so many times we thought he was at the end and he would bounce back with some new type of treatment. We just started living our live like the end was only hours away. Now I have so many wonderful memories. The little things, like sitting and reading the paper together with no interruptions - no phone, kids or having to hurry up and do something else - just spend time together. You'll know when the end-stage is catching up.

Sharon, February 6, 2001 - Hi all, My husband was diagnosed with CHF in January of this year. He has a long history of heart problems in his family. His mother and father both died of heart disease; I'm not really sure what kind but he is taking this well for now. however, I do notice him starting to feel frustrated with his diet and a total change of everything in his life. I told him the only thing in life you can be sure of is that there will be change. It didn't make either of us feel better. We are just starting on this journey and I never have God far from my mind. I hope everyone's loved ones are well. I will pray for us all. Thanks.

Nadine S, February 7, 2001 - Hi, I have been reading these pages for the last 2 months and find them to be a great connection to people who understand, because we all have someone we love going through illness. My 40 year old husband was diagnosed with CHF and dilated cardiomyopathy in November, 2000. I became very upset of course, and found this site in my search for information.
     He has been on the entire group of meds for 2 months now. We saw the cardiologist again yesterday and the clinic is telling us that his heart function has really responded to treatment and is functioning well, according to the echo, although his heart is still enlarged. He is scheduled for a <Vo2max test soon and then we should have an idea of his capacity at this point.
     My question is, now that he is "stabilized" what happens next? I think he is out of heart failure right now but having the cardiomyopathy is still an issue. We don't know if it was caused by a virus or is just idiopathic. He has no other history of heart related problems, no obvious risk factors or behavior previous to all of this (has good cholesterol levels, normal BP, non-drinker, non-smoker) So are we looking at a gradual decline over years or would the expectation be that he can remain slightly disabled but okay? I know that we should be thankful for how well he is doing right now, but I have this nagging worry that we haven't seen the end of all of this. He wants to go back to work full-time and I wonder how his heart will cope. Lots of questions and few answers. Any advice?

Van, February 7, 2001 - Hello, Thanks for the informative site. My father has cardiomyopathy and CHF. He is 75 and is taking Theo24, Coreg, K-Dur, Nirrpex, Lasix, Coumadin, Lanoxin, etc,... He also has a pacemaker that was installed about a year and a half ago. His EF is 30% and he has been having problems lately with shortness of breath and wheezing. Does anyone have any information or experience with upgrading pacemakers to the bi-ventricular ones? We are thinking of having this done. Any information you could give me would be greatly appreciated. Thank you, Van.

Beth C's February 8 reply to Nadine's February 7, 2001 - Hi, My husband was diagnosed with dilated cardiomyopathy in December of 2000. Like you, I have found this site very helpful. My husband has also responded well to the medications after some initial adjustments and has been able to resume work full-time. In fact, this week he has even worked a fair amount of overtime and not felt ill effects.
     As far as prognosis, who knows? Bill has had a third degree heart block for at least 30 years and was told at age 20 he had only a 50/50 chance of living to age 35. He had no symptoms of heart problems until last summer at age 50 and then the only symptom was fatigue. I should also mention that he had a pacemaker implanted in August. Adjustments were made to the pacemaker, which may also have contributed to improvement. We are trying to be optimistic and learn as much about the disease and treatment as we can. Also, have faith that God will take care of our needs even though as we go through this it is often difficult to see how. If my husband had let the prognosis of our city's leading cardiologist get him down in 1971, where would he be today?

Patricia, February 8, 2001 - Hi, Can anyone explain to me what causes cardiac cachexia and how to determine if someone with CHF has it?

Jon's February 8 reply to Patricia's February 8, 2001 - Hi, I wanted to get some professional advice on this before responding so I e-mailed a good friend who is a CHF doc. I paraphrase his reply here (all mistakes are mine!):
     "This is a matter being intensely studied. There are probably many contributing causes to cardiac cachexia. In severe illness, low perfusion of the bowel may reduce food absorption, and its congestion can cause the loss of a lot of protein. Recent investigations have discovered that in heart failure with cachexia, there is an unusual inflammatory activation of the immune system, with exaggerated production of substances like tumor necrosis factor and cytokines that may worsen both the cachexia and the heart failure."
     In other words, it's a result of severe illness screwing up a lot of "normal" bodily processes. ;-) Jon.

Vicki, February 8, 2001 - Hi, I am so thankful I found this site because I do not have much other information to go on. After 2 years of pleading, my husband finally went to the doctor 5 days ago and found out he has CHF. After hunting in grocery stores all weekend, I still have not found the low-sodium products I thought would be there. Would any of you wonderful people share what you have found, brand names, etc,...,? I also am so grateful for the book titles some of you suggested and the recipes posted at this site. I feel like we are just starting a long journey that many of you have been on for awhile so any help is greatly appreciated. Thank you Jon, for this place to come and learn and share, and probably cry and celebrate. I have no friends with this same experience so this feels like a "family of friends" already.

Monica, February 8, 2001 - Hi, I have a question about my mom's CHF. I went to a web site - - that a drug interaction checker. I entered all my mom's drugs and got one alert about her amiodarone and her digoxin. The alert said to watch for digoxin toxicity and to watch for the symptoms, which she seems to have. I asked her cardiologist if he should check her digoxin levels and he didn't think it was necessary. Is digoxin toxicity common? My mom is sensitive to drugs and reacts rather strongly. Does anyone have any info on this? Thanks, Monica.

Jon's February 8 reply to Monica's February 8, 2001 - Hi Monica, Her "dig" levels should be checked. Jon.

Katie's February 8 reply to Nadine's February 7, 2001 - Hello Nadine, From my experience with my husband, our doctors told us that cardiomyopathy is a life-long problem. I have met several patients who have made what they call complete recovery. Once my husband was diagnosed, treated, and began dietary changes, he did improve tremendously and continued to do physical work in a power plant. He worked in water treatment for the turbines. Incidentally, two other co-workers came down with cardiomyopathy within a few months of each other. One was 22 years old and received a heart transplant right away; the other was 28 years old and did not make it to transplant. My husband was 50 at the time and survived for 8 years.
     Be sure to ask your doctor directly how severe your husband's cardiomyopathy is and what the long range treatment plan is. Don't be shy with something as serious as cardiomyopathy. I would definitely seek a second opinion, for my own peace of mind. Jon's site here has been so very helpful - keep reading and try the recipes. I have printed them out and shared them with the hospital staff.
     I found that keeping a journal from the beginning (when diagnosed), with dates of tests, doctor visits, sick days taken, and medications. This was very helpful throughout the years. I kept a database of medications with name, strength, dosage, what it was for, and date to mail-order the refill. This was handy since I printed out wallet size cards (1) for my husband's wallet, (1) for my wallet, and (1) for the medication box. On doctor days, I would just print out the current card and leave it at the doctor's. The nurses loved it all typed out and having multiple doctors, everyone had current information. The journal made filling out SS Disability forms and insurance forms a snap. These little tips helped me be more organized and therefore have more time to spend with my husband. I hope some of this will be helpful for you, Katie.

Karen P, February 8, 2001 - Hello Jon, et al, My husband is 60 years old and was diagnosed with heart failure 2½ years ago. Since then his EF has been around 20%; the first reading being about 25 but the rest at 20%. He developed end-stage kidney failure and is presently on peritoneal dialysis. He saw his cardiologist today and the echo they did showed his EF to be at 10% now. My question: They also described seeing what they call "smoke" on the echo which the doctor said was blood swirls because the heart is pumping so inefficiently. I meant to ask what the medicalese is for this swirl of blood in the heart (usually I'm asking for information in layman's terms!) but I forgot. Anyway, he is now back on Coumadin and shortly they will cut back his amiodarone. They wanted to cut back the Coreg but decided against it. His BP was 80/56 but he does not get dizzy or lightheaded. Can anyone give me any more technical info on the smoke or swirls of blood they were seeing in his heart on the echo? Thanks for your time, Karen.

Karen P, February 8, 2001 - Hi, Regarding my own previous post (above), I guess what I am really asking is: "Just how sick is my husband?" I am cautious about asking that direct question in front of my husband when we are in the doctor's office. I've sensed it is uncomfortable for my husband but I need to know. I do so much better when dealing with reality.

Jon, February 8, 2001 - Hi everyone, I am adding a new feature to the site, which you all should feel free to participate in. See this post for more. Jon.

Davida's February 9 reply to Julie's February 3, 2001 - Hi Julie I just sent you an e-mail expressing how sorry I am to hear what you are going through. I am a young wife in a similar position. I ask any wives who can provide support to Julie to please e-mail her. So many wives from this site provided support to me when my husband first took sick.

Davida's February 9 reply to Vicki's February 8, 2001 - Hi Vicki, I have hunted and hunted and came up with Quaker Oatmeal or grits no-salt; Some Little Debbie snacks have less than 5%; Del Monte no-salt canned veggies; Sunbeam bread has the lowest salt so far; House Autry reduced seafood breader.
     You just have to check all labels and stick with the brands you find. For instance on French dressing I checked all the labels for sodium content and found the store brand had the least. Eggo's banana waffles were good. Check juices because some orange juices have salt. Use plenty of no-salt fillers like rice and pasta with meals, and fruits for snacks or before meals. Don't make any boxed meals such as Rice-A-Roni or Hamburger Helper unless you put more rice to stretch the salt content or more pasta in the hamburger helper to stretch it. Sugar Bear Wheat Puffs have the least salt for cold cereals. Peter Pan low-sodium peanut butter is good. On days you go out for dinner choose no salt breakfasts like oatmeal and low salt lunches. Good luck.

Suzy C, February 9, 2001 - Hi, This is my first post. I have been reading medical books for the past 45 years, first as a nurse, then to get through my husband's lung cancer, and now to deal with his CHF. Like many of the messages I have read tonight, his doctors could not find anything wrong with him when he was suffering with the lung cancer for 2 years. I finally went in with him and screamed at his doctors. He lost his right lung.
     In 1994 it was the same story all over again, sick all the time, tired, coughing, congested, flu, pneumonia, with many many trips to the doctor's. Only when he went to the pneumonologist did they find his CHF. He's now a class 3 and can barely walk down the hall to the bathroom. He uses his oxygen nearly 24 hours a day. His EF is 25% and his lung capacity is 20%. He's very positive and upbeat, takes his meds regularly, and works part-time for our daughter when he's up to it but he absolutely will not control his eating. Salt and sugar are like aphrodisiacs to him. He eats ice cream every single night. He loves to cook and I often find him in the kitchen when I come home from work making french fries and steak and hamburgers and buffalo wings and homemade bread! He can't manage the cardiac rehab anymore and gets stressed just walking around. How can I get him to eat better? I'm so stired of nagging and when I cook proper meals, he eats that and lot of other stuff besides. Help!

Annie G's February 10 reply to Vicki's February 8, 2001 - Hi everyone, I read regularly but write rarely. First some good news: My 46 year old husband was diagnosed with DCM in November of 1998 with an EF of 13%. He was worked up up for heart transplant and was stabilized on meds and didn't need to be listed. He was just at his cardiologist's and his EF is now 35%, and he's feeling great. He's received the go-ahead to gradually increase his hours over 3 months back up to full-time after about 15 months of no work, and 8 months of 2-3 hours a day. I've read this site from the beginning and it has been a great motivator and a source of great information. Thanks to everyone for being willing to share.
     To Vicki regarding low sodium stuff: We live in Ontario, Canada, and you're right. There is a lot less low sodium stuff available in smaller cities and towns, and generally in all of Canada. Sometimes it's available but too pricey. The first thing I did was buy was "The Complete Book of Food Counts" by Corinne T. Netzer. It lists all foods plus lots of brand names and includes sodium counts per serving. It helped us to see where all the sodium was. We cut out all prepared food, pretty much all canned food, and we (I) started making all dinners from food and not packages - no frozen prepared foods either. It took about 3-6 months to lose our deep desire for the salty taste but food does taste good again.
     I work full-time night shifts and we have 3 kids at home but we all adjusted. Get fresh spices and add 1½ to 2 times what the recipe calls for. Get a pepper mill. Search the web for recipes. Many web based recipe sites will list products by sodium. I found it worked best to try to prepare foods and dishes that started with low sodium counts. Once we got used to the lack of salt, it became easy to take our old favorites and modify them. Modifying our favorites didn't work at the beginning because we missed the salt flavor boost too much. Now they taste great. Try the site "Culinary Cafe" for recipe ideas. Culinary Cafe provided me with a collection of 24 spice mixes like cajun spice and taco spice mixtures that I make up and add to foods as the desire stricks me. I just leave out the salt in the mixes and for the most part they taste better than using small amounts of the regular spice blends or even some of the low sodium spice blends.
     Heinz has No Salt Added tomato sauce and Unico makes NSA tomato paste. I buy the lowest sodium spaghetti sauce I can find and cut it with tomato sauce. Vicki, if you want to write to me directly and tell me what stuff you guys usually eat, maybe I can give you some ideas. The meals will get better and food will regain its taste! Good luck, Annie G.

Cal, February 12, 2001 - Hi Jon and everyone, I'm a first time poster. My wife has had CHF for a year now and is under care of the cardiologist who saved her life the night she was taken to the ER. I was told that she also has had a heart attack, which I'm not sure is correct. Anyway, the happenings over the year are that she has atrial fibrillation, has had a cath and TEE procedure which showed no blockage but a very bad leak in her mitrial valve. She had the mitral valve replaced with a pig valve and now is being treated with Betapace, Lanoxin, Altace, Lasix and Coumadin. The combination of the BP meds and Lanoxin knocks her pulse rate down to the 34 range and what he proposes is a pacemaker to control the low pulse rate, probably kicking in about 50. All this, the way I understand it, is to control the a-fib.
     Altace is to help control her systolic blood pressure, which is now sometimes in the 130 to160 range, and sometimes jumping to the 180s. Of course there have been many other tests not mentioned. My question is, does this seem to be the right course of action? He is not a CHF specialist but seems to be very smart and is very attentive to my wife. Jon, although we are both 69, she still is my life and I am trying to hold on to her as long as I can so I appreciate anything anyone has to say about this. We do thank you all very much. Ocie and Cal.

Jon's February 12 reply to Cal's February 12, 2001 - Hi Cal, One of the primary problems in the treatment of CHF in patients over age 65 is that doctors do not treat them as "aggressively" as they do younger people, and their quality of life suffers as a result. Whether he is a CHF specialist or not, at least your wife's doctor seems to be treating her very much as he would a younger patient and that is good.
     Balancing meds is tricky at best and whether a pacemaker to offset the effects of her meds is wise or not is impossible for me to say from here. It largely depends on how much her a-fib affects her quality of life. If it interferes greatly with her life, the a-fib needs to be controlled even if invasive measures like a pacer are required to offset meds' side ffects. If her a-fib does not bother her that much, then aside from Coumadin to protect her from blood clots, meds seem less important for the a-fib.
     For CHF, meds doses are often determined by what a patient can tolerate. There is no point in giving a patient so many (or such high doses) of CHF meds that the person cannot function; or such that she is in actual danger from too-low heart rate or too-low BP. So if it were me - and this is only my opinion - I would base the need for an invasive move like a pacer to offset high drug doses on whether I was going to greatly shorten my life without it or if my life was going to be the pits without it. If neither condition applies, I would think very carefully: Are my drug doses just too high? Or, do I need to try different drugs? Either way, I would get a second opinion before getting a pacer. I believe in second opinions before any invasive procedure other than cath, and before any device implant. If I just muddied the water, feel free to to keep after me until I actually answer your questions. :-) Jon.

Ellen's February 12 reply to Suzy C's February 9, 2001 - Hi, My husband also cannot control his eating habits. It is very difficult to watch someone you love put a lot of food in their mouth that they shouldn't have. At first I was worried and I nagged him quite a bit. Also, I got a lot of static about the meals I fixed. I was more worried about what he was eating than he was. The last straw was when he said to stop nagging, that I wasn't his mother.
     I have realized that whatever I say does no good. He is an adult and he knows the harm he is causing himself. I don't nag anymore but I don't supply him with junk food, which is what he wants to eat. He does go buy it himself, though. Every so often he'll ask me if this or that has a lot of salt in it. I know he would feel much better if he ate better but you can't tell him that. He thinks he deserves credit for taking all his medications every day and not smoking, which he stopped right away when he first became ill - and that is a big thing. It has been almost 3 years! I realize that only he can change his eating habits and hopefully he'll do it before it's too late. I know how you feel though. It's a tough situation.

Indiana, February 12, 2001 - Hi Jon, I love this site! My mother-in-law has CHF, diabetes, COPD, emphysema, and now end-stage renal disease (ESRD). I need to talk with others who know about CHF and kidney dialysis. The diet discussed here (which we eat at home) conflicts with one for ESRD. My mother in law won't use either diet. She says her MD does not restrict her fluids and she can eat eggs now. She is overweight, on oxygen, and gets no exercise. I caught her daughter fixing her sausage and ham yesterday and they think that was all right. I'm going nuts here because my husband refuses to speak to her. No one here knows what's going on and her cardiologist is 2 hours away.

Jon's February 12 reply to Indiana's February 12, 2001 - Hi, I would call her cardiologist and explain that her dietary requirements are confusing both for her and for family members. Ask him to schedule a visit with a dietician who is aware of the necessities of diet for both her conditions. My cardiologist did this for me and it really helped. Jon.

Suzy C's February 13 reply to Ellen's February 12, 2001 - Hi Ellen, I knew I wasn't the only one fighting the losing battle. I went to the CHF specialists on Jon's site and sent an e-mail to Dr. Stuart Katz at New York Presbyterian Hospital. Today I received a reply with a phone number to call for an appointment. I put my husband on notice that I'm taking him to a specialist and he should be prepared to change his eating habits. He was relieved. I think maybe he might go with the program if someone other than me tells him. I live in New Jersey so it's not far. His GP and his cardiologist just maintain his medicine and do nothing more. The pneumonologist does a better job of treating him than the others do. We both want his quality of life to be better. He is 63 years young. Thanks for the message.

Bill D's February 13 reply to Cal's February 12, 2001 - Hi Cal, Welcome to Jon's Place! If you are only reading the messages posted on the forums, you are missing the most valuable part of Jon's site! At the top of each forum page, click on the words across from "Site Index". You'll find Jon has a gold mine of answers to your questions. Start by reading The Manual. Then start burrowing into all the information Jon has collected on CHF. I am 70 now and I got this stuff when I was 63. I remember reading someplace that only 18% of us (65 years or older) have "normal" blood pressure. Mine is about 180/60. I think I need that pressure difference to keep my blood running around. <g> I don't want the cardiologists to aggressively treat me when I saw a lot of us were dying from the meds! ;-) Bill D.

Shannon T's February 13 reply to Karen P's February 8, 2001 - Hi Karen, I am an echo tech, although not a very experienced one. I do not know the medical term for the "swirling smoke" you describe but have seen it often when the EF % or cardiac output is very low. The blood can become stagnant in the ventricle and blood clots could form. That is why the doctor prescribed Coumadin. I know that this is not much help. Take care, Shannon.

Cal's February 13 reply to Jon's February 12, 2001 - Hi Jon, Thanks a million for your prompt reply. You came back at me exactly as I hoped for and everything you said will be taken under consideration. I know you're busy but just want to add that Ocie is going for another echocardiogram and 24 hour holter monitor test today in anticipation of a pacemaker implant (I think). We probably will have a pow-wow right after results. I'm glad you noticed the personal attention thing for he really does have a caring attitude and we are very thankful for that. I'm not sure of the time element for contact with a CHF heart specialist. The closest one being in High Point, North Carolina, which is about a 6 hour drive.
     The best to you and everyone on this board and I do hope that we all hang in there. There is so much hope in the things to come, I think. I had already ordered some MyoVive before contact with the doctor. He would not let her have it because of vitamin K content (listed as dl-a tocopherol) so I took it myself. I'm going to order more when the new formula is available. Good stuff! Your friends Ocie and Cal.

Annie G, February 13, 2001 - Hi, When we tried to change my husband's eating habits, there were a few things that helped make a difference. The dietitian met with Steve before he was discharged from hospital, told him how hard it would be to change, and then went over the diet with him. He was also told that a piece of pizza could put him back in the hospital because of the sodium! I'm sure the bluntness helped - it sure brought it home for me. Steve really was a junk food junky, often picking up fast food when there was a full dinner waiting for him at home. Our kids were 14, 12 and 10. I took them aside and told them that there would be no junk food eaten in front of Dad but that we weren't going to police him either.
     He had quit smoking and stopped drinking, and was restricting his fluid intake. We would all eat the same meals and they could add salt at the table if they liked but no seperate meals. They were not to bug their dad at all about what he ate - but they weren't going to tempt him either. I know from my work as a nurse that many doctors don't emphasize the dietary changes enough. I think that most of the patients I took care of who had CHF did not change their diet enough, mostly because they didn't really know how to go about it and didn't have a dietitian's help and time. Most of the doctors seemed to concentrate on the meds and not the whole person. I think it's starting to change, at least at the hospital where I work. We do see a CHF specialist but most of the people I see at the hospital don't. Also, after having CHF for 1½ years my husband developed type 2 diabetes. Is there something going on with Coreg and higher rates of diabetes? Oh boy, more diet changes!
Jon's note: Be sure to read the intro at the top of the Coreg page

Dana J, February 14, 2001 - Hi again to everyone, It's been awhile since I last posted. Everyone here has always been so helpful to me, I hope someone can help me out again! I have a friend who has been ill for some time now. His doctor thinks that he may have lung cancer and more tests will be done this Friday. He has no medical insurance and he was recently fired because he was too sick to perform his job. Does anyone know what kind of assistance is available to individuals in his situation? His wife works but does not make enough to cover his medical expenses. Any ideas at all would be appreciated. Thanks, Dana.

Laura, February 15, 2001 - Hi, First of all a bit thanks to all of you who have helped me with positive words and prayer over the past months! My husband John was diagnosed with idiopathic DCM in August of 2000. His EF was 10-15%, then after three months it was 20-25%. Well the big news is that as of February 12, it is up to 55%!
     I don't know how or why he recovered so fast but it seems like a miracle! I asked his doc about meds and he said he will keep him on them for 6 more months then back off them. I know this has been addressed before but what about the ACE inhibitor and beta-blocker? Any input would be hlepful. Thanks again for your support.

Jon's February 15 reply to Laura's February 15, 2001 - Hi Laura, Congratulations! It's always nice to hear about the people who do recover from this nasty old stuff! :-) My own CHF specialist says that with such patients, he may or may not take them off beta-blockers but he will always leave them on an ACE inhibitor permanently, assuming they have one of the common forms of cardiomyopathy, like your husband. This is because CHF can recur no matter how complete a recovery seems and my doc says he isn't going to let that happen to anyone if he can help it. I do not think he keeps them on any other CHF meds. Again, I am very pleased to hear your news! Jon.

Karen P, February 15, 2001 - Hello All, I do not recollect any CHFers identifying themselves on the forum with an EF below 10%. My husband's, it appears, is about 10% now. For obvious reasons, I am wondering if it can go below 10%. How low can it go? He still seems to be functioning fairly well. While he is quite inactive, he doesn't have SOB nor has he ever had lung congestion. He just gets really tired. I have to say, I'm confused. Is there any information out there to help me understand this? Karen.

Jon's February 15 reply to Karen P's February 15, 2001 - Hi Karen, This can get complicated. The short version is that yes, a CHFer's EF can go below 10% and they can still be fairly active, and can escape actual heart failure (symptoms). This is highly individual.
     Cardiomyopathy varies in its effects on people. It involves much more than reduced heart function. Chemicals naturally occuring in the body - especially hormones - occur at different levels and at diffferent times than in healthy people. Muscles get different oxygen levels under use. The brain gets less oxygen. Blood vessels get different chemical signals from their natural regulatory systems in the body; And more. So the more of these things that go really wrong in any one person, the worse that person will feel and the less he will function, regardless of how much blood his heart actually pumps (EF). You can read some of this in an article on EF that Dr. Tarantini wrote for us in the FAQ. It is kind of confusing, isn't it? ;-) Jon.

Lee R's February 15 reply to Dana J's February 14, 2001 - Hi Dana, Perhaps your friend can apply for SSD (Social Security Disability) and with a doctor's note in the meantime, perhaps unemployment can help. I hope this helps a little bit. Lee R.

Sheila S, February 15, 2001 - Hi everyone, I am not a patient but I am looking for answers I am hoping to find here. My mother-in-law was diagnosed with CHF years ago but never had problems until recently. She has been rushed to the emergency room at least once a week for "fluttering" in her chest. Sometimes they will keep her for 3 or 4 days, other times they will send her home. Last night we got the call, "We're taking mother back to the hospital." They kept her in the ER for awhile. They said they think it's her gallbladder making her chest hurt! We cannot understand the heart doctor. She has never been put on a low sodium diet, she has no signs of fluid. They said there is no surgery they can do! Any words of knowledge will be a blessing! God bless, Sheila S.

Jon's February 15 reply to Sheila S' February 15, 2001 - Hi Sheila, Get her to a CHF specialist! "Gallbladder" is the single most common misdiagnosis made when people have heart failure. It is the misdiagnosis that almost killed me 6 years ago. I kid you not - even though she has not yet been diagnosed with CHF, get her to a CHF specialist as soon as possible. Then you'll know one way or another whether to seek other possibilities or treat her for CHF. Jon.

Vicki, February 15, 2001 - Hi, I posted a few days ago about finding low sodium products and I want to thank everyone for their suggestions and their e-mails. We are well-stocked now and I am learning to cook in this new way. My husband is beginning to feel better. Now I am trying to talk him into going to a specialist. He doesn't think he needs to because he feels better. I am certain he has sleep apnea but he has never told the doctor my concerns about that. Can that be a contributing factor for CHF that also needs treatment? Thanks again, you are great! God bless you, Vicki.

Jon's February 15 reply to Vicki's February 15, 2001 - Hi Vicki, Absolutely and big-time. Sleep apnea can actually cause CHF, and always contributes to its severity when present. You can read a bit about it here and here.

Suzy C's February 15 reply to Annie G's February 13, 2001 - Hi, You're on the right track with your meal planning. I did something like that when my children were young and at home, just for plain old good nutrition. With just the two of us now, I'm usually too tired to eat, much less cook. My husband is the chef and has cooked professionally so it's hard to keep him out of the kitchen. We have been to a nutritionist who gave both of us a complete regimen of vitamins, minerals and nutrition. He couldn't stick to it. At this point he is retaining fluid and is stressed most of the time. We are hopeful Dr. Katz will motivate him to take better care of himself. Thanks for your information.
Jon's note: If he considers himself an expert, can you present it to him as a challenge - making low sodium food taste good? There's probably a book in it if he can come up with really tasty low sodium recipes - no joke

Davida S' February 16 reply to Karen P's February 15, 2001 - Hi Karen, My husband's EF was documented at under 10% when he was first diagnbosed as critical with CHF and pneumonia. When he left the hospital he was around 10%; That was February, 2000.
     One year later, I am blessed to say he is at 40% or higher. His last test showed 40% in August, 2000. So in 6 months his EF improved, which is a miracle in itself considering how sick he was. At his last doctor's visit in December of 2000, the doctor suspects that based on his appearance and activity level, it may be higher than 40% but no tests were taken to confirm this. My husband is 36. When he first got sick and came home from the hospital he was very slow but determined to take his walks and attend cardiac rehab. His first 3 weeks home he had a physical therapists come to our home to assist him in a daily exercise routine. Like Jon said, a lot of factors contribute to CHF course.

Ken, February 16, 2001 - Hi, I need some help understanding blood pressure and its relationship to CHF. My father-in-law was just last week diagnosed with CHF. He has high blood pressure (130/60). Since 60 is 75% of 80 (normal blood pressure) does that mean that his heart is functioning at 75%. How low does it go before total failure?

Jon's February 16 reply to Ken's February 16, 2001 - Hi Ken, To measure how well the heart is functioning, several tests are used. You can read about echocardiograms, caths and MUGA tests on our CHF Tests pages. Ejection fraction is the primary measure of how much blood a CHFer's heart actually pushes out per beat. You can read about that, along with other topics, in our CHF FAQ. And of course, please give The Manual a good read. I think that will set you up with a good basic understanding of heart failure and heart function. Jon.

Bill D's February 16 reply to Ken's February 16, 2001 - Hi Ken, You said he has high blood pressure at 130/60. That's not high blood pressure! I wish I had that pressure. Mine is 190/60. Bill D.

Davida S' February 17 reply to Nadine S' February 7, 2001 - Hi Nadine, My husband is 36, not much younger than your husband. I worry about him going back to work too. You echo my fears that this will always be a shadow over our heads. I often get teary-eyed when I am alone, feeling sorry for my husband and sometimes myself. Then I think of the blessings God has bestowed upon us and I lift my head up and know it will be okay. I thank God we do have faith in our future with CHF.
     My husband has shown tremendous improvement since he first was diagnosed in February, 2000. He has not worked in a year and the doctor told him about 2 months ago that he could go back to some kind of work but he choose to go back to trade school and learn something that would not be so physically demanding. He has choosen PC repair and loves it. Hopefully he will return back to work sometime this year. Pray for peace and ask God to help you move on mentally from this so that you can have a brighter outlook for his future and yours. Take care.

Carolyn S, February 17, 2001 - Hi again Jon, My husband is still very tired all the time so he sleeps a lot of the day away. His GP told him to take melatonin to regulate his sleeping pattern. This way he can sleep better at night and stay awake longer during the day. I wanted to switch him over from his current multi-vitamin to MyoVive because it has CoQ10 in it. Of course we will discuss this with his CHF specialist when we see him this week. Another thing I read about in your article on MyoVive was about calcium overload. I stopped giving him extra calcium supplements and will check with CHF specialist about that too. It's wonderful having a site like yours to go to when you need help. I can't begin to thank you enough for all the important information and recipes.

Jon's February 17 reply to Carolyn S' February 17, 2001 - Hi Carolyn, Thanks for the kind words. I tried melatonin and was very sorry. It caused me a week of very nasty palpitations. I called my doc immediately and he scolded me for trying anything without asking him, saying he would have told me about this possibility if I had asked. He said there was nothing to do but wait about a week and the palpitations would go away; and they did :-) Melatonin may not have this effect on everyone but it is something of which to be aware. Jon.

Gus R's February 17 reply to Dana J's February 14, 2001 - Hi Dana, Regarding assistance for your friend, most of the assistance I'm familiar with is specific to the state one resides in. I'm in Illinois so my advice is based on what is done here and may not apply elsewhere.
     In general, total household income has to be near the "official" poverty line to qualify for most things. Their assets will also have to be low but their residence and one average automobile will not be included in determining their assets. If they are close on those things, I'd suggest they start with Social Security SSI. He might be able to get SSI even if he has not been approved for Social Security Disability Benefits. The requirements for Medicaid are similar. Medicaid is partly state and partly federal, and here it is administrated by the Illinois Department of Public Aid. The IDPA has many other assistance programs and I have found them very helpful.
     A phone call to Social Security and whatever his state agency is called should tell him quickly and easily if he is eligible for those items. There are also agencies that might provide assistance in paying home heating bills. If he has much of his own money going to pay for meds, there are many programs for free or low cost meds. Many of the drug manufacturers have programs for meds also, and Jon has some links for information here and here. I also like this site, which has many downloadable application forms online. The qualifications for meds assistance varies greatly. Some have annual income limits, which can vary from $8,000 to $25,000, but some only require that one's doctor state that buying the meds are a hardship for a patient.
     These things are very time consuming, and obtaining assistance has become my "work" but it has paid off for me. Today I received a check from the State of Illinois for $70 to help pay my real estate taxes. That won't make much of a dent in a $2,000 tax bill but it's something, and I was pleased to see it arrive because it means I have qualified for a new program that will also buy some meds, get me half price vehicle license plates and other things. If your friend needs help looking for programs, I'll search the Internet a little for him if he'll tell me the name of his state and county, and whether their current annual income is under $25,000. Best wishes, Gus R.

Dana J, February 20, 2001 - Hi Lee and Gus, Thanks so much for the information. I'm going to pass this on to him and I know he will be very grateful. God bless, Dana.

Suzy C, February 20, 2001 - Hi, It's me again. Jon, I love this site. I have gained so much information. Having said that, I can share our disability experience with you all. We live in New Jersey. In 1994 when my husband was diagnosed, the first thing we did was apply for state disability. I determined the name of the examiner handling his case and called him once a week to remind him that our case was in his pending files. At the same time we applied for Social Security Disability. I went with him to the initial interview, made sure all his documents were copied in front of me and handed back to me, especially his doctor's note and DD-214. I got a name and number of someone to call. Again, I called every single week until I got the name of the examainer handling his case. By the time the 6 months of state disability was running out, the SS disability kicked in. By this time, the SS department was so happy to give me the examiner's name! They did not want me to call them every week. I was never mean, ugly or rude, just very tenacious about getting the status of his file: Who has it? Why? What else do you need? When is the hearing? When can we schedule the visit to your physician? And so on. It seemed to be an easy process. Writing it down like this, it sounds like I was a nag but I was just regular, consistent and confident that this process would work. It did. Don't despair guys, it can be done. Most important, get the name and phone number of your examiner. I hope this helps. Suzy.

Mary T, February 20, 2001 - Hi, I need some information on low blood pressure. We seem to be having a problem with keeping my husband' BP in a reasonable range. Today at the doctor's it was 70 over 40 and 68 over 38. I would appreciate it if anyone could point me in the direction of any information in regards to low BP. They have reduced his captopril and taken his Lasix away until he gains 7 lbs. I never thought we would ever have a problem like this. His BUN and creatine are elevated as well. Thanks, guys.

Carolyn S' February 20 reply to Jon's February 17, 2001 - Hi, The melatonin affected my husband in a different way. He had blurred vision and couldn't focus. He stopped the melatonin right away.

Sharon, February 20, 2001 - Hello to all, This is my second post about my husband Mickey. He went into the hospital January 17, 2001, with fluid around his lungs and was diagnosed with CHF. We have not found out much of anything since then. We are going to the VA now. He had an echo today and I thought he would have seen a cardiologist today but no such luck. I guess his primary gets all the info from the hospital and all the blood work and this echo from today and he decides what to do. I am pretty upset with all this. He needs to see a CHF specialist but one of the secretaries was telling me that there is no such thing as a CHF specialist - they are all just cardiologists. I thought he must go to cardic rehab but there was no talk of that at all.
     I live in the west Palm Beach area of Florida if anyone has any suggestions. If anyone has been through this please let me know. I will post if I get any additional info. He is doing really well and has no visible problems now. It would be so easy to let everything go on until the next problem but I am determined not to do that. I hope all is well with everyone and their loved ones. Thanks for reading and for any help.

Yvette's February 20 reply to Vicki's February 15, 2001 - Hi, I have had PPCM since 1996. I was officially diagnoised with sleep apnea in 1998, although I know I've had it all my life. I may have a genetic tendency to sleep apnea. I was given a bi-pap machine and could feel improvement almost immediately. Mostly I was able to rest. Also, sleep apnea can lead to other conditions such as a-fib, which I got in 1998. While the snoring may bother you, it can kill him. Chances are he will be referred to a pulmonologist who will then refer you to an overnight sleep study. Hopefully within a month of that he will get the help he needs. I must admit it took me about 3 months to be able to keep the mask on all night without yanking it off in my sleep.

Autumn's February 20 reply to Carolyn's February 17, 2001 - Hi Carolyn and all, I tried melatonin several years ago for a brief time but stopped it because it gave me such intense dreams. I talked to my doctor's nurse about it and she said she takes it and that it also increased the intensity of her dreams but not as so much that she finds it unpleasant to stay on.
     I think herbs and supplements are much like drugs and affect each person differently. If they have the potential to do good they also have the potential for a reaction. For instance, a couple months ago I started taking green tea capsules. Green tea is supposed to be beneficial in many ways but every time I took it my circulation shut down severely. I started doing some searching on the web about green tea and I found an article stating that one beneficial mechanisms of green tea is that it acts as an ACE inhibitor. Bingo! I am allergic to ACE inhibitors. I quit having that reaction when I quit taking the green tea.
     I've tried talking to my doctors before I try anything but I live in a a rural area and the doctors I've seen have no clue about effects of herbs or supplements. They often don't even consider it important to note what I'm taking and that can be a mistake if some of the supplements thin the blood or could have a negative effect with a medication the doctor has already prescribed or may prescribe in the future. I sometimes do get some good information from my druggist who is also into naturopathy and she may be able to tell me if something I may be considering will interact with any of my meds. Doctors generally do not have the time or inclination to learn about herbs and supplements so I think it is up to me to become informed about what I am taking and then inform my doctors and nurses about that and any effects of that supplement. Autumn.

Karen D's February 21 reply to Sharon's February 20, 2001 - Dear Sharon, I'm sorry that your husband's doctor's office isn't being more helpful. There are 3 heart transplant centers in Florida; one of them is at Jackson Memorial Hospital in Miami. Maybe you could call the transplant center and ask if they know of any CHF specialists in your area. You also might try to call your local medical society and ask them for a list of cardiologists, then call each of those doctors and ask if they specialize in CHF patients. Please let us know what you find out. I hope your husband continues to feel well. Karen.

Cheryl, February 21, 2001 - Hello, I am a first time poster. I have been looking for information and I came across this site by accident. Maybe God is trying to tell me something, who knows? Anyway, I need help. My 80 year old mother underwent triple bypass 4 years ago. Since then, she has been diagnosed with COPD and emphysema. She is on oxygen 24 hours a day and is in and out of hospitals and nursing homes. Approximately a year ago, hospice stepped in. When she fell in her apartment recently, she ended up in the hospital with fractured vertebrae at L4 and L5. We thought she was gone. She ended up in another nursing home where she has been for the last 3 months.
     Five days ago, they did an x-ray because she has not been feeling well. They found that she has CHF and pneumonia. They have put her on antibiotics, Lasix and other meds. However, tonight when I went to visit her, she has deteriorated to the degree that she struggles to breathe and absolutely has no strength. Just to get up and go to the bathroom is a chore. I have noticed that her appetite is going downhill. The nurses and doctor said the antibiotics are for the pneumonia primarily, and the Lasix to manage the fluid build-up and retention. They are giving her potassium also. She is on a range of other medications for her COPD, emphysema, and heart.
     I need to know before I talk with the doctor, what do I expect? What questions should I ask? I want her quality of care to be excellent, not just middle of the road. Should I get hospice back into the picture? I am absolutely devastated and do not know where to turn. I need and want to be informed before I schedule a meeting with the nursing home staff and the doctor. I have enjoyed reading through your site and hope that I have found a place where I can get answers to questions without being so confused - as I am - when I talk to the doctor. I know he tries, but sometimes, well, we just have to take it into our own hands. Thanks again.

Mary Lou's February 21 reply to Cheryl's February 21, 2001 - Hi Cheryl, The first thing you must do is make sure that your mom is seen by a CHF specialist. I doubt that there is one in the nursing home but can you or they make arrangements for a CHF doctor to see her? You also must read The Manual! It is a good place to start your education regarding CHF. The answers to your questions can be found there in accurate, plain English. My prayers are with you and your mom, Mary Lou.

Roxanne P, February 21, 2001 - Hi All, It is with my deepest regret that I tell you all my mom Jill passed on. She left us Friday, February 16. Sudden death is what happened. Mom was getting her workup for a transplant and a pacemaker was going to go in next month. I'm still pressing organ donation and always will. God bless you all and thank you for all the support and info. Sincerely, Roxanne and family.

Cathy, February 22, 2001 - Hi, I have a question about too much potassium and heart problems. Please point me toward articles on this issue. My son is now on meds for too much, yet the doc says he is class one. I do not think so. Thanks for the Dr. Silver page. His was the first book ("Success With Heart Failure") I read and continue to read. He tells it like it is yet gives so many answers. Jon, God bless you. Cathy.

Beth C, February 23, 2001 - Hi, Does anyone have experience with headaches and CHF? My husband (the sick one) has had headaches almost daily since the end of October, 2000. He started experiencing them about 2 weeks after staring to take Toprol for moderately high blood pressure. He was not diagnosed with DCM until December, 2000. During December and early January his headaches became so bad that he was basically debilitated. Other than fatigue he has no other overt CHF symptoms. His cardiologist took him off Coreg and Altace, and he has been on Cozaar now for about 6 weeks. He still has headaches but not as frequently or as severe. His blood pressure is down from 190/110 to 125/85, lower than it's been in years.
     His doctor still thinks headaches are related to medication and a close friend of mine who had a stroke in her 30s and who is an ACE inhibitors for high blood pressure says headaches are a "way of life for her." However, if the medications are not the cause or if they will all cause headaches, I'm wondering if my husband should be back on an ACE inhibitor rather than an ARB.
     Thanks to this site, Jon, we do have the name of a CHF specialist with special interests in cardiomyopathy and we have an appointment scheduled in about a month. By the way, my husband's most recent echo did show an EF of 56%, up from 30% in December. An echo from last summer - when he first went to the cardilogist for extreme fatigue - showed an EF of 65%. His heart was very slow though, so a pacemaker was implanted. This has been a tough 6 months. I will add that my husband was diagnosed with a complete heart block at age 21 when he was drafted. We think it is congenital. He was told at that time that he would probably not live to age 35. He was 50 before any symptoms or problems surfaced so he has beaten the odds so far and I'm hoping this continues.

Jon's February 23 reply to Beth C's February 23, 2001 - Hi Beth, For what it's worth, high blood pressure itself causes headaches, and beta-blockers can cause headaches and mental confusion as well as short-term memory loss. The most frequent side effect of ACE inhibitors is headache, right alongside the famous ACE cough. Although headache is a side effect of ARBs, it is less common with them than with ACE inhibitors. Jon.

Sharon, February 26, 2001 - Hello all, I found out my husband's EF is 35 to 40% but the problem is on his heart's left side. I think the doctor said the thickness was 6.6. I'm not sure when we will have an appointment with a cardiologist - I hope soon. We are going to the Veteran's Administration. I was wondering if anyone has used any alternative therapy along with their regular treatment, like acupuncture, chelation, or anything else? I would be curious to know if anything has helped. I hope this post finds everyone well and your loved ones on the path to recovery. Thank you Jon, for this site.

Emily, February 26, 2001 - Hi Jon and all, Last year I found your web site when I learned my mom had CHF. I downloaded tons of info that both my mom and I found very valuable - thanks.
     I am writing now because my mom is having difficulty breathing. The doctor has prescribed a nebulizer that she has to use 4 times a day. She had an x-ray done which showed that she has scar tissue on both lungs and that one of the lobes on her lungs has collapsed. Her immune system is so poor. She is suffering with depression and she feels the end is near. Just reaching to pick up a phone book is exhausting. She has always been a vibrant woman. She raised 9 kids. The doctor wants to schedule a CAT scan once her infection subsides. Can anyone clue me on what is happening with her lungs? Is this a normal progression of these conditions?

Jon's February 26 reply to Emily's February 26, 2001 - Hi Emily, I can only speak to her heart failure. CHFers' immune systems are always weak, but scarring on her lungs is not CHF-related as far as I know. Depression is often present in any serious chronic illness. Maybe someone else has ideas about her lungs, but until then I would certainly go through her health "history" and look for previous episodes of illness or injury that may have caused this. Jon.

Todd K, February 26, 2001 - Hi, Does anyone know if intravenous Primacor can be given more than once a week? My father seems to respond well to the treatment for a couple of days after but then goes back to feeling lousy. I am wondering if he should get treatment more than once a week. Thank you, Todd.

Dana J's February 27 reply to Beth's February 23, 2001 - Hi Beth, I also take Toprol for my CHF and it gives me some real thumpers. Some days, I have sharp pains running through my head constantly; Other days, just a constant, dull ache. I don't know if all beta-blockers do this or just Toprol, Dana.

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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