The paperwork never ends The Archives
June 1-15, 2005 Archive Index CHFpatients.com

Roger's 6-1 reply to Larry's 5-24     joules and volts, ICDs
 
Roger's 6-1 reply to Joyce's 5-26     good days and bad days
 
Jon 6-2     no posts tomorrow
 
Bethany T 6-2     seek ideas on my husband's symptoms
 
Jon's 6-2 reply to Bethany T's 6-2     one possibility
 
Carla's 6-2 reply to Julia's 5-27     high-risk pregnancies
 
Kirstyn E 6-2     has anyone had right arm pain? & more
 
Lori K's 6-2 reply to Scott Brown's 6-1     just wondering if anyone else experienced this?
 
Jon 6-5     update
 
Bill 6-5     CHF specialists and cardiologists
 
Taise L 6-5     seek LVAD experiences & more
 
Claudia S 6-5     please consider having a sleep study
 
MaryAnn H 6-5     questions - CoQ10, carnitine & more
 
Kiran J 6-6     meds change questions
 
Lori K 6-6     keep us informed about beta-blocker switch
 
Jon's 6-6 reply to Lori K's 6-6     tests, beta-blocker switch
 
Pam C 6-6     is this a safe drug for me to take?
 
Jon's 6-6 reply to Pam C's 6-6     calcium channel blockers
 
Aparna K's 6-6 reply to Claudia S' 6-5     are you still a CHFer? can it come back?
 
Roger G's 6-6 reply to MaryAnn H's 6-5     low sodium cooking
 
Jon 6-7     switching beta-blockers update
 
MaryAnn H's 6-7 reply to Roger G's 6-6     coping with heart failure
 
Roger G's 6-7 reply to Lori K's 6-6     Coreg and stomach upset
 
Jennifer G's 6-7 reply to Carla's 6-2     CHF and carrying a child to term
 
Kathy H 6-7     got good news Thursday
 
Andy P 6-7     seek ACE inhibitor cough experiences
 
Cheryl C 6-7     how do you bear this style eating?
 
Scott Brown's 6-8 reply to Cheryl C's 6-7     coping
 
Debbie T's 6-8 reply to Cheryl C's 6-7     coping
 
Jack D's 6-8 reply to Cheryl C's 6-7     changing eating styles & habits
 
Roger G's 6-8 reply to Andy P's 6-7     ACE inhibitor cough experience
 
Susan L's 6-8 reply to Andy P's 6-7     ACE inhibitor cough experience
 
Roger G's 6-8 reply to MaryAnn H's 6-7     low sodium frustration
 
Jack D's 6-8 reply to MaryAnn H's 6-5     eating low sodium
 
Barb N's 6-8 reply to Jennifer G's 6-7     pregnancy and heart drugs
 
El R 6-8     good news update & low sodium eating
 
Becky E 6-8     seek input on sleep, stiff neck, and more
 
Sandy N's 6-8 reply to Cheryl C's 6-7     enjoying low sodium
 
Pat H's 6-9 reply to Andy P's 6-7     ACE inhibitor cough experience
 
Jon 6-9     this will tickle you
 
Marty C 6-9     seek your input on new doc's ideas
 
Roger G 6-9     low sodium resources
 
Mike H 6-9     can you ride a motorcycle with an ICD?
 
Ann M 6-9     how do you cope with this sadness?
 
Jenny M 6-9     does anyone take InnopranXL?
 
Cheryl C 6-9     low sodium, sleeping, thanks & more
 
Peter S 6-10     do CHFers tend toward diabetes?
 
Jon's 6-10 reply to Peter S' 6-10     I can only guess
 
Sandy N's 6-10 reply to Ann M's 6-9     coping emotionally with heart failure
 
Stephanie's 6-10 reply to Mike H's 6-9     ICD and riding a motorcycle
 
Roger G's 6-10 reply to Ann M's 6-9     coping emotionally with heart failure
 
Roger G's 6-10 reply to Cheryl C's 6-9     forgetfulness with heart failure
 
Scott Brown's 6-10 reply to Ann M's 6-9     coping emotionally with heart failure
 
Jack D's 6-10 reply to Mike H's 6-9     ICD and riding a motorcycle
 
Jim R 6-11     question on pulse rate and exercise
 
Bill H's 6-11 reply to Cheryl C's 6-9     word games for improving memory
 
Shane R's 6-11 reply to Peter S' 6-10     CHFers tending to get diabetes
 
Barb N's 6-11 reply to Peter S' 6-10     CHFers tending to get diabetes
 
Susan A's 6-13 reply to Ann M's 6-9     grieving, sadness
 
Cheryl C's 6-13 reply to Roger G's 6-10     and to Bill H, low sodium eating
 
Roger G 6-13     seek comments on getting an ICD
 
Tunny G 6-14     no salt added chips you can buy online
 
Tunny G's 6-14 reply to Roger G's 6-13     device implant experience
 
Sandy N's 6-14 reply to Roger G's 6-13     device implant experience
 
Scott Brown's 6-14 reply to Cheryl C's 6-9     low sodium eating
 
Joy K's 6-14 reply to Jim R's 6-11     exercise, heart rate, and blood pressure
 
Michelle A's 6-14 reply to Ann M's 6-9     coping emotionally with heart failure
 
Jack D's 6-15 reply to Scott Brown's 6-14     sodium is in lots of baked goods & desserts
 
Dave S 6-15     question about fish oil supplement and ICD
 
Roger G's 6-15 reply to Tunny G's 6-14     ICD and low EF
 
Jon 6-15     low EF and ICD implant
 
Debbie M 6-15     seriously stressed out - need some advice
 
MaryAnn H 6-15     question - elliptical trainer versus treadmill?
 


Roger's June 1 reply to Larry's May 24, 2005 - Hi Larry, A joule is a measurement of energy and would be calculated as Joules = Volts times Amps times Time. So your Joules = 36, and you need to know Amps and Time to find the Volts. I hope that helps. My cardiologist and I just discussed me getting an ICD implanted today. Fun, fun, fun. rogergthree@earthlink.net


Roger's June 1 reply to Joyce's May 26, 2005 - Hi Joyce, We have good days and bad days. I look at my life like a battery on a charger. Rest is the charger and work or play is the drain. Balancing them is the key for me. Sometimes total exaustion can hit in a minute and sometimes it walks up and I can see it coming. Hang in there. rogergthree@earthlink.net


Jon, June 2, 2005 - Hi everybody, I'll be out of town briefly so posts will not go up tomorrow. Jon.


Bethany T, June 2, 2005 - Hi, I have written a couple of times about my husband Larry (age 43) who was diagnosed with CHF three years ago now. The last time I wrote (last week) he was diagnosed with worsening heart failure because he was so short of breath. They put him in the hospital to start him on the experimental drug Tolvaptan. While there, they discovered some PVC troubles and put in a defibrillator. They also discovered that his thyroid was off (probably from the amiodarone that he had been on for about 2-1/2 years but off about a month ago).
     He came home last week on Thursday and his breathing was no better and getting worse. We finally got back into the cardiologist yesterday. His blood pressure was only 68/42. He said the only other options would be an aritificial heart or transplant. However, the breathing didn't seem fluid-related since it was easier to breathe when lying down. Then when his BNP came back as only 47.4, the doctor was stumped. He is thinking maybe this is all thyroid connected. So he is back at the hospital for some dopamine and not sure what else. They will do some more thyroid testing today. I am just curious as to what you all think about all this. Thanks for reading. mammabear7@msn.com


Jon's June 2 reply to Bethany T's June 2, 2005 - Hi Bethany, One of the major and very serious amiodarone side effects is lung damage. Has he been tested for this? If not, it should be done immediately. Jon.


Carla's June 2 reply to Julia's May 27, 2005 - Hello Julia and all other heart buddies! It's so great to see this site back up and running. Jon, know that you are continuously in my prayers. You are such a wonderful blessing to all of us. About pregnancy, meds, etc,..., as many of you remember, I've had a really tough struggle being told "no children!" Well, my last echo (in March) showed an EF of 40%! My cardiologist and high-risk obstetrician have given us a cautious thumbs-up to proceed but I have to admit we're scared to death! We're going to wait until my next echo in July to see if we see continued strengthening. I've been told that I will stay on Coreg throughout the entire pregnancy and enalapril for the first trimester. It cause renal failure in the fetus after that so we'll have to work on my blood pressure with something else. I would love to visit with you anytime. Maybe we could help each other through this. carla@cnbt.com


Kirstyn E, June 2, 2005 - Hi, My mother, who was diagnosed with CHF in November just got her EF up to 35 to 40% from 18% a few months ago. She had high kidney test results so her doctor took her off Inspra and lowered her lisinopril from 20mg to 10mg a day. I've noticed her thought processes seem clearer and she walks longer but I fear her EF will go down again. Could it shoot down again without me noticing a difference in energy?
     Also, she has been complaining lately about right arm pain, not a shooting pain but one she descibes like a weird pulsation like getting your blood pressure taken. Has anyone else experienced right arm pain that isn't shooting? Thank you for this site! bellachela6@gmail.com


Lori K's June 2 reply to Scott Brown's June 1, 2005 - Hey Scott, Thanks for the reply. I included the Vo2max in my post just to give a better picture of my cardiac condition. I understand the heart stretches and becomes more inefficient over time, and I guess that is more what I thought was happening when I saw my heart size was back to pre-diagnosis size. I assumed if my heart was stretched back out again, it woud be less efficient and therefore would not pump as well.
     In following posts for years on this site, heart size and EF had a trend to move up together or down together or maybe one stayed constant, but mine moved in the opposite direction! I just thought I would see if anyone else has had this happen, and where things went from there. Thanks for your insight. I'm forever learning. Lori. thegoof86d@aol.com


Jon, June 5, 2005 - Hi everyone, Well, my daughter is now officially "on her own." She's settled into her new apartment and starts her week-long orientation for her new job Monday. I now have my own closet and am totally freaked out - now all my clothes "have a home" for the first time ever. <g>
     An update on my health situation. All my blood work and my echo came back as normal as can be. I'll be talking to my CHF doc Monday about switching from Coreg to Toprol-XL in case my problems are actually meds-related. Jon.


Bill, June 5, 2005 - Hi Jon, I am in Euegene, Oregon. I sent a check awhile back and should send another. Here in Lane county there are no cardiologists that are CHF specialists. I have tried to get the only cardiology group to get one but they say none is needed as they are interventionists but fully trained to handle CHF. I totally disagree. All these guys speak about is surgery and 70,000 precedures. I have been to 3 and spoken to others, and none believe in a medical approach to CHF. Now at the only hospital in town they have started a CHF section for training CHF patients and it is by the main interventional cardiologist, I have told him I wish we had a CHF doctor. So my suggestion is that more cardiologists take up CHF as a speciality. For all the other cardiologists, stop trying to convince the world that we don't need CHF specialists. bryan55@exchangenet.net


Taise L, June 5, 2005 - Hello, I just found this site which I think is the most complete, accurate and informative resource I have come across for CHFers, families, friends and caregivers. I have been to every "expert" medical resource site but none of them can capture what living every day with this constellation of disorders is really like for people.
     I am a cardiac surgery research nurse at a world renowned medical center. My newest study is an LVAD trial. I'm hoping some of you who live with VADS or may be considering one as bridge to transplant or destination therapy might share your experiences with my patients and families. I can give them brochures, show CDs and read informed consents, but I cannot share what it feels like, how it affects everyday life, and help them make the best decision to go forward (as the case may be) or not with implant.
     I'll be directing every patient I screen to this site whether they decide to join the trial or not because of the depth of knowledge they'll find. Bless you all for sharing your experience, strength and hope. lawlesspatricia@hotmail.com


Claudia S, June 5, 2005 - Hi all, It has been sometime since I have been to this board. I was diagnosed 6 years ago with an EF of 15%. It is now 60% and I feel great. I want to yell loudly for everyone to consider having a sleep study. A drop in oxygen was the cause of my cardiomyopathy. My heart was huge! Now it is normal size.
     This is not the answer for everyone, but I do see many more people here having sleep studies than before. Just a few short years ago it was not even considered as a possible cause for heart failure, now it is. I found my cause because I continued to look for it and I am thankful to have found my answer. God bless, and I hope everyone is having some good days! CMSchm@aol.com


MaryAnn H, June 5, 2005 - Hello, My son was diagnosed with ICDM two years ago. He had a BNP test done at Cleveland Clinic and found that he has never been in heart failure. My question is if CoQ10 benefits him. He is now taking 150mg and has been on it for over a year. From what I read on this site, it mainly helps people who were diagnosed with heart failure in the past year. Also, would L-carnitine benefit him at all? Also, since he doesn't have any signs of heart failure, should he still be on a low-sodium diet? I can't believe how hard it is to watch sodium intake. He is only 23 and is so sick of salmon, chicken and healthy food. Any replies would be helpful. mahall1958@hotmail.com


Kiran J, June 6, 2005 - Hello, I underwent mitral valve repair in 1992. I have had CHF the last two years. I take acitrom, sotalol, and Lasix. Cordarone was prescribed earlier but for the past 20 days I have taken sotalol. Is there a need to change the medication or is any other precaution is required? I am a 39 year old lady (housewife). mithilarun@rediffmail.com


Lori K, June 6, 2005 - Hi Jon, Let me know what happens with your quest to see if you should switch beta-blockers. I am going through that process of deciding as well. I felt like I must have been getting worse a few months ago, with extreme fatigue, muscle weakness and dizziness, but my tests came back okay as well. My stomach has been bad so I know now it must be something else. However, my docs seem to think my meds may be the culprit of some of this. Keep me informed, and may the force be with you (okay, so my 6 year old is getting to me with all the Star Wars hoopla). Lori. thegoof86d@aol.com


Jon's June 6 reply to Lori K's June 6, 2005 - Hi Lori, I e-mailed my CHF doc this afternoon asking for possible drawbacks to a switch from Coreg to Toprol-XL. I'll let you know what he says. I had every kind of blood work you can imagine and every single test came back normal (I had his nurse fax me all the results and checked them one by one myself). My echo showed a mild decline in EF but still 55% with my heart size actually improving to normal - it was enlarged before despite my EF improvement. Jon.


Pam C, June 6, 2005 - Hi, My computer just got back online so I was happy to see this forum back up! I will make a donation as soon as my husband goes back to work - it's well worth it. I went to a new cardiologist last fall and he put me on a calcium channel blocker called diltiazem hydrochloride at 30mg twice a day. He wanted me to double the dose at my last visit but I do not feel any better on this medicine. I tried it on time release but makes me feel like I am on a buzzz continually and I am still tired. I also take Lasix and Aldactone (spironolactone).
     Has anyone else had any dealings with this drug? Two pharmarists questioned this choice also. This made me a little nervous. I have CHF from congenital heart disease (missing my plumonary artery). Thanks for any feedback. karuk46@yahoo.com


Jon's June 6 reply to Pam C's June 6, 2005 - Hi Pam, Please listen carefully to this because I am so ticked off over this kind of thing that I may get incoherent before I'm done. No CHFer should take any calcium channel blocker (CCB) except amlodipine! Taking any other CCB can literally kill you! Here are some urls to get you started on the topic:

  1. chfpatients.com/meds.htm#amlodipine2
  2. chfpatients.com/text/calcium_channel_blockers.txt
  3. www.chfpatients.com/ace.htm#diabetic_nephropathy - see the IDNT trial excerpt.
  4. chfpatients.com/text/CHF_treatment_in_a_nutshell.txt (third paragraph in an article on managing heart failure)
  5. chfpatients.com/glossary.htm#ccb
  6. chfpatients.com/faq/guidelines_99_short.htm - these are the official heart failure treatment guidelines and under "To Treat Heart Failure" number 6 clearly states to avoid using CCBs!

The package insert for diltiazem hydrochloride (Tiazac) even says that studies on the drug should not be applied to heart failure patients because, and I quote, "It should be recognized that patients with impaired ventricular function and cardiac conduction abnormalities have usually been excluded from these studies."
     Please talk to your new cardiologist immediately about why he prescribed this drug. If he wants you on a CCB, ask him why he did not prescribe amlodipine (Norvasc), which is the only CCB shown not to increase your risk of death when you have heart failure. If he cannot quote some medical literature more recent than the year 2000, fire him and get off the drug. However, only get off it under a CHF specialist's supervision because suddenly stopping a CCB can kill you as well!
     I am not trying to scare you. I just want to be sure you and everyone else understands why you have to research your own treatment at all times, and double-check your doctors on every single decision. Hey, I trust my CHF doc, but I had him fax me all my test results and I checked every single one before talking to him about a treatment change. It's my life and I'm not taking any unnecessary chances with it. ;-) Jon.


Aparna K's June 6 reply to Claudia S' June 5, 2005 - Hi everyone, I have been lurking on this site for sometime, 9 months to be exact, since my mother was first diagnosed with IDCM. At first I would just read the messages, trying in to take in the enormity of this condition. There are no CHF specialists where I stay (India), so we go to a general cardiologist. If it weren't for this site, which gives me so much information on what precautions to take and what to look out for, I think I would be totally helpless. So thank you Jon, for keeping this site up and running despite so many problems. God bless you and your family.
     Claudia, I am very glad to hear about your EF and heart size being back to normal. I would just like to know, does that mean that you are no longer a CHFer? Or can CHF still come back? aparna_hss@yahoo.com
 
Jon's note: Once you have had CHF, it coming back is always a possibility.


Roger G's June 6 reply to MaryAnn H's June 5, 2005 - Hi MaryAnn, About low sodium cooking, I think your son and I have a lot in common. After two years I really wanted to eat things I had not had in a long time - like pizza, so I learned to make them myself without the salt. You can do a lot with a bread machine, a pizza stone, and some creativity on the toppings.
     With all foods, I think the trick is adding other flavors in place of salt. When I threw out the salt shaker, my spice rack gained many new additions. Substitutions are very easy once you get the hang of what you like. Some quick ideas: Tarragon or paprika on red meat, garlic with chicken, apple sauce with pork chops, lemon juice on green veggies, cumin for homemade tacos, oregano on white fish, and that is only a start of what's possible.
     The Internet has many recipes for sauces and dressings that can be made without salt, and they only take a minute or two. It took me quite awhile to learn to cook again without the salt shaker but I have also been given the blessing of many new foods and flavors that I probably never would have considered. rogergthree@earthlink.net


Jon, June 7, 2005 - Hi everyone, My doc e-mailed me back about switching from Coreg to Toprol-XL. He has no problems with it at all and will call me tomorrow to set up a dosing schedule for the switch. Jon.


MaryAnn H's June 7 reply to Roger G's June 6, 2005 - Hi Roger, My problem, or should I say, our problem has never been adding salt to our food because we have never done that. I have never even seasoned food with salt. The problem lies with salad dressings, condiments, fast food, cereal and so on. He is 23 years old and can't play soccer or basketball anymore. Now when we go out with friends he can't even have a beer. He is now the designated driver. I copied many of the recipes for low sodium that Jon has put up and that has helped quite a bit. mahall1958@hotmail.com


Roger G's June 6 reply to Lori K's June 6, 2005 - Hi Lori, In your post to Jon you say your stomach is bad. Sometimes I think Coreg bothers my stomach since I get cramps and upset just after taking it. During these months I will break the Coreg in half and take the two parts an hour or two apart. It seems to help the cramps and upset stomach. My cardiologist suggested this is also better than taking it all at once since the half life of Coreg is short. rogergthree@earthlink.net


Jennifer G's June 7 reply to Carla's June 2, 2005 - Hi Carla and also Julia, I would be very interested in hearing both of your stories regarding heart failure and childbirth. Like Carla, I have been told it is not in my best interest to have a child. I was also told that both beta-blockers and ACE inhibitors are toxic to the unborn child, so that settled the question for me! Now, I'm hearing (from another online reference that I'll have to look up again) that Coreg is not fatal to your unborn child but the baby's weight should be closely monitored because it could drop too low, and that premature birth was common. Please don't use that as an official word regarding Coreg because I can't find the online source where I read that information.
     A previous cardiologist also told me that any ACE inhibitor would be toxic to the unborn child. Based on all that information and not wanting to further damage my own heart, my husband and I decided to look into adoption. What we found seems like such a long and murky road to adoption that I've recently found myself looking up information again on the possibility of carrying a child.
     I would love to hear from both of you and anyone else who has information that may be helpful. You are welcome to answer my reply either on the message board, or via my private e-mail. Anything you've learned along the way that you wouldn't mind sharing would be very helpful to me. Thanks to everyone! jennifer@doublegates.com


Kathy H, June 7, 2005 - Hello everybody, I got some great news Thursday. I had a regular follow up appointment with my cardiologist. I have had cardiomyopathy and congestive heart failure almost exactly 3 years. It came on suddenly, they think from a virus. When it first happened they were talking about a heart transplant. My EF was 25%. I have been posting here since about a month after diagnosis, so some may be familiar with my story.
     Thursday I was told my EF is 45 to 50% and that my heart function is considered nearly normal! I will remain on the cardiac meds but the cardiac function is much improved. On the other hand, my cardio-doc told me that my shortness of breath is not heart related and he thinks that I have emphysema due to my parents' heavy smoking when I was a child. However, since I don't smoke and I am already on various inhalers, the diagnosis doesn't make a lot of practical difference.
     I have been seeing the cardiodoc more frequently rather than less because I am taking biological agents for my severe Rheumatoid Arthritis. About a year ago I posted here that if the RA didn't get under control, I wasn't going to care about the CHF. I have failed several protocols for RA, including Enbrel. Right now I am on Humira and it seems to be working, so I am feeling better than I have in 3 years.
     I had been unable to continue my exercise program I was on, walking on the treadmill, because the RA was so bad I was nearly wheelchair bound, but now that the Humira is working I am back on the treadmill. It's amazing to me the way autoimmune diseases can reach out and grab you when you least expect it, and they can somehow lead from one to another. Let's hope this is as far as it goes. kathy_in_wlsv@verizon.net


Andy P, June 7, 2005 - Hello, I've been taking lisinopril since first diagnosed with CHF 1-1/2 years ago (10mg in the morning and 20mg at night). I've started to develop a nagging, dry, tickle in the back of the throat type cough that seems to be worse at night. I'm not retaining fluid - at least based on weighing myself daily and lack of any SOB so I doubt the night time cough is related to fluid buildup in my lungs. I've read on Jon's site that this cough is a side effect of ACE inhibitors in 10% of patients. Does anyone have first hand experience with this, and how effective a substitute is an ARB? andy@mrdatacorp.com


Cheryl C, June 7, 2005 - Hi everyone, I've been reading through the messages here and think I've found the support I was looking for. I'm 56 and just had my first crisis (and diagnosis of) CHF at the end of April. I'd been having trouble with breathing while walking and sleeping for 2 weeks, and was being treated for lung problems. When I suddenly started having trouble catching my breath while sitting still, I decided to make a trip to the emergency room, and am I ever glad I did?! Once the diuretics took effect I felt fine but of course got to be their guest for another 4 days. Naturally, the diagnosis did not make me jump with joy but at least I feel better now. My EF, by the way, was 20%.
     Now here is my puzzle and any help or sugestions are welcome. Like I said, I'm 56. I only weigh 93 pounds. My blood pressure was in the range of 130/93. After having an angiogram (cath) done, it was discovered that I don't have clogged arteries, have not had a heart attack, and have no bad heart valves. Also, my cholesteral numbers are good, with my good cholesteral very high. I do have a history of smoking (I just quit 3 weeks before my crisis) but the doctors seem to disregard this and were more interested in my drinking history.
     I do work for a California winery, but never have been a big drinker myself. My family history includes lots of heart attacks (embolism) and a grandmother who died having CHF. She was however, very overweight and had a history of high blood pressure. She passed at 49 years, basically untreated, which also destroyed her kidneys or so they say. They did mention virus as a cause, but I don't recall having anything that really knocked me off my feet. What else is there for causes? If it was virus and does eventually disappear (they say this seems possible), I've read here that it could come back. Does this mean that even if it goes away I won't ever be able to eat like a normal person, or drink more than 2 liters of liquid a day? If I'm having a hard time eating enough each day (I need to gain back the 10 pounds they took away in water) before running out of sodium, how does a larger person do it?
     I've copied some of the recipes already, don't use salt, and lost all my favorite food, but there's sodium in everything. I'm not diabetic so I can eat sugar but who wants it by the spoonful? Of all the changes in my life that this has brought (medications, restricted physical activity, etc) the food thing seems to be hardest for me to cope with. Does anybody have any suggestions on how to make this easier to bear? 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.

Scott Brown's June 8 reply to Cheryl C's June 7, 2005 - Hi Cheryl, Everyone on this board is in the same boat. I have weighed 260 lbs for the past 4 years. Your cardiologist should set a goal for the amount of sodium and water you can consume each day. Even the best users on this board have some sodium, since it is naturally occuring in much of what we eat. We cut out extra salt altogether. There are plenty of meat, dairy, fruits and vegetables, sweets and snacks you can fill up on. Just watch the labels on prepared foods. Most of that stuff is out (definitely soups) unless you make it yourself. Soon, you aren't even going to think about it.
     I am assuming your cardiologist has you weighing yourself every day so you know when you are taking on water. The water pill will help to remove excess sodium. If you start taking too much water pill, you are going to feel lousy (as you lose your electrolytes). It's a balancing act. Like everything, it gets better with practice. The main thing is that now you know what you have and you have some good tools to cope with it.
     Find out about the "restricted physical activity" as well. I credit my physical activity for me feeling relatively good. Your cardiologist should help work you into a good/safe exercise routine. With the history of heart problems, I am going to guess you have a genetic disorder (perhaps a bad protein which you inherited). I have the same - they call it familial. They may never know the true cause. It could turn out to be from a virus as well.
     I hope your adjustment to living with CHF is a speedy one. Take care. Scott B. kitchenerguy@rogers.com


Debbie T's June 8 reply to Cheryl C's June 7, 2005 - Hi Cheryl, My mom has lived with CHF for five years and weighs 100 pounds on her good days. I also have CHF, age 52. The salt thing grows on you and soon you won't even notice you aren't using it. It is still hard to eat out or eat packaged foods and maintain less than 2 grams sodium a day, though. Fruit and veggies and soooo many things have fluids in them as well and unless you are in an episode of CHF, there are controls you put on yourself by knowing your amounts of fluids too. Lots of green peppers, onions, carrots and such really liven up a lot of recipes (thanks Jon - I've made a lot of yours but am still trying to find some of the peppers you refer to).
     I find my mom eats the best when I cook for her and take it over. The one we like the best so far is the meatloaf receipe and then with baked potatoes. We also find that when your body says it's time to rest, it means it. Otherwise it swells. I have a biventricular pacemaker/ICD implanted, which helps the breathlessness a lot but it is still there and has to be dealt with. A feeling of lack of a mind at times is the hardest on me. I could use suggestions there and also about the ability to sleep at night. Ambien helps but my doc says take only two days in a row and then off a night. It's usually about three thirty on those days! Chins up and take care, Debs. debs4246@yahoo.com


Jack D's June 8 reply to Cheryl C's June 7, 2005 - Hi Cheryl, First off, if it was cause by a virus they would have verifiable proof. Doctors have this severe problem of not being able to admit that they don't have a clue. That's why 99% of the people running around with cardiomyopathy have "idiopathic cardiomyopathy" idiopathic means they don't have a clue but they count on the fact that the normal patient doesn't know what that means.
     Changing your eating habits is only a problem if you want it to be a problem. Believe it or not, you actually have the power to change your behavior even if ten million TV commercials and ten million psychiatrists, psychologists and teachers keep telling us that we must take some kind of drug to do it because we are too weak-willed to accomplish anything without the assistance of drugs. Everything doesn't contain sodium or at least sodium in amounts that will be harmful to you.
     The first thing you need to do is get rid of the American style of eating. Toss out all the junk, read all the labels, don't buy processed food (that's the kind that comes in jars, boxes, bags, blister packs, etc.). Buy fresh meat, fish, fruits and vegetables. Bacon, sausage, deli meat, hot dogs, etc,..., etc are not fresh meat. You can eat most of the things you used to eat but you have to learn how to cook and make them for yourself.
     If it's not raw, then it should stay in the store. Everything you eat now started out raw and was denatured at the factories that produce imitation food. However, even if you think you are buying raw food, if it is in a package you need to read the label because food packagers have a habit of drenching packaged food with sodium. Once you have learned to do things the way you should do them, it gets easier. maddjak@hotmail.com


Roger G's June 8 reply to Andy P's June 7, 2005 - Hi Andy, Yes, I had the same situation. I was taking Vasotec and developed the cough you are questioning. I was switched to Diovan and then because the insurance company did not have Diovan on its list I switched to Avapro. I have had no cough for several years now and my blood pressure is 102/65. I asked the cardiologist last week if the benefits of ARBs are the same and he said they have completed studies now and the results are positive that an ARB will provide many of the same benefits.
     After the switch, it did take awhile for my cough to go away. My personal perspective is that I am much happier without the cough and can better enjoy life even if it may be a little shorter on the ARB. I also have insomnia from Coreg so the cough really made it bad at night. At least now I can sleep a little more. I wish you the best. rogergthree@earthlink.net


Susan L's June 8 reply to Andy P's June 7, 2005 - Hi Andy, I had been on enalapril (Vasotec) for about a year when we realized I was coughing pretty regularly. It was a dry cough that irritated my husband (although he didn't complain) more than it bothered me. The doc switched me to Diovan (an ARB) this past fall and the cough went away quite soon after. I have had no problems with Diovan. Good luck. susanlocurto@hotmail.com


Roger G's June 8 reply to MaryAnn H's June 7, 2005 - Hi MaryAnn, Ah yes, I understand completely. Almost anything in a box or can has too much sodium and going out to eat is a real adventure in picking through the menu for something we can eat. Fast food is way over the limit on sodium and blah, blah, blah.
     Sorry if I have spewed forth my mutual frustration with the low sodium situation. I even sent an e-mail to Emeril and asked if he would do a week of low sodium cooking on his show. I guess for us with CHF, fast food is fruit, condiments are made at home and taken along to the restaurant, and an occasional red wine is better than a beer. rogergthree@earthlink.net


Jack D's June 8 reply to MaryAnn H's June 5, 2005 - Hi MaryAnn, A low sodium diet is pretty simple. You buy food that doesn't have sodium in it and you eat that food. That means breaking out of the American eating habit of buying junk in boxes, cans and prepared foods. Prepared foods include bread and anything that comes from any restaurant.
     Your son has to learn self-discipline. Since he lives with you then you also have to learn how to buy the right food. It's easier to buy the right food using the labels on it that tell you the sodium content. Then throw away all the junk you have in your house. However, nothing is going to help your son until he is willing to help himself. He can eat all the junk he wants to and complain that he can't stand the sodium free stuff. That's fine but he will eat himself into an early grave. It would help if he actually posted here himself because you can't do it all for him. Don't justify his actions or feel sorry for him. That can just make everything worse.
     I'm not sorry about being blunt because blunt wakes people up to reality. There is no such thing as making it easy. The reality is to do what needs to be done. maddjak@hotmail.com


Barb N's June 8 reply to Jennifer G's June 7, 2005 - Hi Jennifer, Regarding beta-blockers and ACE inhibitors during pregnancy, most beta-blockers are Category C for pregnancy, which is generally another way of saying they are not advised, but probably haven't been adequately tested either. There are at least some case reports in which metoprolol or atenolol have been sucessfully used during pregnancies, usually to treat hypertensive episodes, but in some cases for women with ischemic heart disease with no detectable adverse impacts on development reported. I would expect that there would have to be very careful monitoring, including after delivery to avoid rapid heart rate or other withdrawal-type symptoms in the baby. ACE inhibitors are Category D - they really are contraindicated in pregnancy and are known to cause major problems, including death of the fetus. protoplasm2@aol.com


El R, June 8, 2005 - Hi, In response to posts about eating and the salt free thing, I have been making everything from scratch and eliminating salt. I find the taste is different but am getting used to it. Just use lots of pepper and more spices. I even found salt-free potato chips! I didn't think such a thing existed. Yes, they are bland, but it works for me.
     I do occasionally indulge in forbidden foods but compensate with extra Lasix if I see weight gain as a result. This is done with my doctor's okay. I just had a checkup, 5 weeks post-op from a mini-thoracotomy for the addition of a left lead/biventricular pacer and am thrilled to share my progress report. My BNP has dropped from the 500s to 206 and I feel great! I have been exercising daily, bicycling 20 to 30 minutes, and swimming for another 20. Last night I resumed running agility drills with my dogs and did not get short of breath! That was the best medicine for me. I will do a CPX (Vo2max) and echo in August to see what the clinical improvement is but for now I think it was a great success! elpiscado@aol.com


Becky E, June 8, 2005 - What a wonderful site! My mother, age 81 and still teaching school, had pericarditis in April of 2002 and they operated to remove the fluid and did a pericardial window. She came out of all of that with atrial fibrillation and was able to resume her normal activities and teaching schedule. She does tire easily with any physical exertion such as going up and down stairs. She is on Coumadin, digoxin and has recently been switched from atenolol to metoproporal & lisinoprol. She also is taking torsemide and potassium supplements.
     She just spent 3 weeks in the hospital with a pleural effusion that was corrected by a thorascopy and decortication. Her stay was lengthened by bowel ileus and luckily they did not operate on the assumption that it was a SBO. She had an NG tube for a week and got transfused several times. She received lots of IV potassium and some magnesium. She came home this past Saturday.
     The cardiologist told us she has components of heart failure. We are busy researching this and your site has been so helpful. She has been experiencing night sweats since she has been home and I wondered if anyone else has had this problem. She also is having difficulty sleeping. She sleeps for an hour and then wakes up and moves to a chair and sleeps in the chair. She feels restless and her legs are twitchy. Does anyone have sleeping advice?
     She also developed a very painful stiff neck with very little range of motion while in the hospital. She is using heat and Tylenol for treatment. I think this is just related to the hospital bed, but wondered if anyone else had experienced this. Thank you. beckyedmondson@sbcglobal.net


Sandy N's June 8 reply to Cheryl C's June 7, 2005 - Hi Cheryl, You sound like you don't spend a lot of time in the kitchen but that's okay. Get yourself an herb garden started. You can find so many ways to use herbs on your food and it tastes wonderful, like you have never tasted! Hopefully you have a green thumb or you can buy them fresh from your local grocer. Learn to become inventive with your herbs on fish and meat of any kind, also any fresh veggies. Stir-fry is also wonderful with veggies. Eating is fun when you enjoy inventing new dishes! Try a food channel on cable tv - you can learn so much on there if you have the time to get involved. Happy eating! bleuskiiisgrl@yahoo.com


Pat H's June 9 reply to Andy P's June 7, 2005 - Hello Andy, I had to stop lisiniprol about 5 months into treatment. My doc put me on Atacand, which dropped my blood pressure quite low initially. We had to play with the dosage and increase very slowly. I am now on 4mg twice a day. I think he may be planning on increasing it - but the cough is gone. <g> morning_dark@yahoo.com


Jon, June 9, 2005 - Hi everyone, We had quite a thunderstorm here last night so I thought I make available a photo of what used to be our backyard shed - now in our front yard. Just for grins, see chfpatients.com/temp/shed.jpg. Apparently, 80 mile per hour winds were just more than it could take. <g> Jon.


Marty C, June 9, 2005 - Dear CHF Friends, I'm in the Air Force and have LBBB, IDCM, CHF and an ICD. I am 44 years old and currently take Coreg, Ramipril, Inspra, colchicine, Zoloft and Xanax. Several weeks ago I discovered (between follow-up appointments) that both my CHF doc and my CHF nurse practitioner have been reassigned to other bases. After three years with them following me through some very difficult times (including a pericardial effusion and the loss of my younger brother to CHF at age 40), they're suddenly just gone.
     I was very upset and concerned about my new provider, who I met today. He is not a heart failure doc and they don't have any heart failure docs at the base now, so I'm without much choice for now. When I met with the new doc for the first time today, I was pleasantly surprised. He completely set my mind at ease and was very familiar with my case. He'd taken the time to read everything in my history and already had several suggestions that I want to run by all of you.
     He immediately doubled the Altace dose I've been on for two years from 1.25mg per day to 2.5mg per day. He wants me to get up to at least 5mg per day, provided my blood pressure doesn't go too low or my electrolytes get out of balance. I'm already on colchicine for chronic pericarditis but since it isn't working very effectively he also prescribed Percocet, which I've taken quite a few times before.
     Finally, he wants me to have a sleep study to rule out sleep apnea as a cause of the dilated cardiomyopathy. Why hasn't my heart failure doc done these things before? I dunno. I also don't know if I should pursue a non-military heart failure specialist, even if I have to pay for it myself. I value your comments and this site has been a great blessing. God bless you all, and thank you Jon. Marty. padre45@aol.com


Roger G, June 9, 2005 - Hi All, I see a lot of posts about low sodium eating. Jon has a great section on cooking and here are some links I found to provide lots of advice and sources of low sodium products as well as recommendations for eating out: www.indata.com/lowsalt/, www.lowsodiumcooking.com/, www.edietshop.com/categories/low_sodium.asp. There are many more if you do a search of low sodium foods on the Internet. Happy eating! rogergthree@earthlink.net


Mike H, June 9, 2005 - Hi all, I am wandering if anyone rides a motorcycle and has an ICD. My doctor had previously advised me not to ride one but I recently saw an article from Medtronic's site that had a success story of a guy who had an ICD and returned to riding his Harley. skinsfanmh@yahoo.com
 
Jon's note: Did your doc say why?


Ann M, June 9, 2005 - Hi everyone, I found this site today and I need it. I got the diagnosis of CHF 6 weeks ago and I'm grieving. My heart function is 27%. I had 2 previous heart attacks and my heart damage is 1/3 of the back side, as well as the front side. I had 3 stents put in the main artery to my heart 2 years ago. My heart is enlarged and working overtime, hence the 27%. Two years ago during hospitalization for heart attack number 2, they did a carotid artery scan and found blockage of 35 to 45% and no one told me!
     My new cardiologist had another scan done last Friday to see how much blockage there is now. He's concerned that I could stroke out any minute. I had one stroke when I was 39. I have met with 2 cardiology group cardiologists in the past 5 weeks and both have given me maximum time of 5 years to live but both have said if I have another heart attack, all bets are off because of the previous heart damage on both sides of the heart.
     I feel so hopeless, like let it come now, heaven here I come. How do you get over that sadness? I'm only 45 and thought I'd live past 50 but not now. betsythebeagle20022002@yahoo.com


Jenny M, June 9, 2005 - Hi all, I posted one time before, but I'm going to try again. My doc put me on InnopranXL (propranolol) today along with all my other meds. I have to go back for an EKG Monday. Has anyone else taken this? If so, how did you do on it? I have been a CHFer since 2000. I need a mitral vave replacement but my heart is too weak to do right now. My other meds are Coreg at 25mg twice a day, Lanoxin at 0.125mg, Coumadin at 5mg for five days then 7.5mg for two days, lisinopril at 20mg in the morning and 10 mg at night, Lexapro at 20mg, spironolactone at 25mg, levoxyl at 0.15mg, and furosemide at 80mg twice a day. I adjust this if I need too. I also take alprazolm at 0.25mg at bedtime, and now this new one InnopranXL at 80mg. Thanks for any help anyone can give me. unionjac@bscn.com


Cheryl C, June 9, 2005 - Hi everybody, Thanks for the fast response to my low sodium inquiry. My limits include 2000 mg sodium per day and 2 liters of liquid. I don't drink coffee so this mostly consists of water. The medications I'm on are 6.25mg Coreg, 25mg spironolactone, 10mg benazepril, and 81mg aspirin. From what I've been reading here, this doesn't seem like much and I'm not sure whether or not to be concerned. Since I returned to work so quickly, I don't have as much time to cook so what I bring for lunch is a real challenge. I usually make enough for supper so I have leftovers for lunch for a day or so.
     I've always enjoyed lots of vegetables (used salted butter on only a few) so that's not a problem. Potatos really seem dead without salt. I have figured out that I can put sour cream and diced tomatoes on top of them for more flavor. I've also put unsalted chicken pieces (cooked) in cooked pasta with fresh tomatoes and broccoli. This is good with a little Italian dressing on it. I now have some sun dried tomatoes that should add flavor but not much sodium, but I have to figure out what to do with them.
     I wish I had more time to cook but I also have chickens, geese, 2 Border Collies, and an African Grey Parrot (Cocojo) to take care of when I get home and first thing in the morning before work! If I hadn't bounced back pretty quickly, I'm not sure how we would cope. One thing I do have a problem with (actually 2 things) is that I don't sleep well. Before, I could sleep anywhere immediately for hours. Now I can usually fall asleep quickly but after a few hours I wake up and lie there wide awake. It does get old.
     Also, they took my Premarin away from me, so that doesn't help. The other thing is, I just forget things immediately that people tell me. I'm sure they think I do it on purpose. I appreciate all the help and love all the information available here on the web site. Thanks to everyone and especially Jon for providing us the help we need. Cheryl C. cocojo86@yahoo.com


Peter S, June 10, 2005 - Hi, Is a non-diabetic with CHF more likely to develop a form of diabetes than a member of the general population, assuming no family history or pattern of obesity? I searched the web site before posing the question. There is a good deal of material showing that diabetics are likely to do less well in coping with CHF, but not on the reverse cause and effect. PeterSperl@cs.com


Jon's June 10 reply to Peter S' June 10, 2005 - Hi Peter, I don't know. Common sense does not always apply accurately to this sort of thing but since beta-blockers raise blood sugar level and CHFers tend to be less active than healthy people, I would guess the risk for diabetes is at least a bit higher in us. That's all it is though - a guess. Keeping extra body fat off would certainly help prevent diabetes. Jon.


Sandy N's June 10 reply to Ann M's June 9, 2005 - Hi Ann, I am so sorry you're going through all this "head torture" right now. I pray you can start to live with the idea that we all will die one day. We are just among the many who may think about it each day. You have been through a lot in your short years and I'm praying you have the strength to tell yourself that it's okay. The sadness you spoke of, I too had it until my doctor gave me Lexapro, an anti-depressant drug that gave me back my normal happy self. I don't think of dying as a bad thing. It's just something we all do, each at a different time and for different reasons. However, I'm here now and will enjoy each day one day at a time. Do something nice for yourself, go spend money you don't have. Wishing you so much love and luck! bleuskiiisgrl@yahoo.com


Stephanie's June 10 reply to Mike H's June 9, 2005 - Hi Mike, I will echo Jon's question: Why can't you ride a motorcycle? My ICD was implanted in December of 2004 and I was back on my Sportster as soon as the weather was good. My doc said it wasn't a problem. Obviously there is risk of the ICD firing while riding and the consequences of that would be greater than if driving a car. I guess it's just a matter of how comfortable you are with it. howsares@saic.com


Roger G's June 10 reply to Ann M's June 9, 2005 - Hi Ann, We are all here with you. Only you can figure a way to get over the sadness. For me, I have a son that is eight years old who gives me great joy and I have a wonderful wife. I have many things to finish with them before I can let go. With a little luck, I will always find more that needs to be done. Please try to find some joy in each day. Find something that you have not finished yet and make it a goal, perhaps an herb garden if you can manage it. They always need attention year after year. A journal of the things you have accomplished and the pleasures you are able to find in each day may help. Please never give up hope. There are always new procedures and meds coming around the corner. rogergthree@earthlink.net


Roger G's June 10 reply to Cheryl C's June 9, 2005 - Hi Cheryl, For memory loss I even forget where I left my notebook. Ha! It goes with the territory! rogergthree@earthlink.net


Scott Brown's June 10 reply to Ann M's June 9, 2005 - Hi Ann, All doctors can do is use the past to predict the future. Not much is "for certain" and this is especially true when it comes to the complexity of the heart. Everyone on this board is faced with the same uncertainty. There are usually options, especially at your young age.
     I assume you have looked into the possibility of heart transplant. While this is not an option for all, I know some transplant recipients who live pretty normal lives with a new heart. My dad had a heart transplant and it was an excellent experience.
     In the meantime, I assume you have a pacer with built in defibrillator. Do heart problems run in your family? I would consider talking to my doctor about managing any depression you might be feeling. Your feelings are completely understandable, but if your life turns out to be shorter than normal life expectancy, you don't want to spend your time unhappy and depressed.
     One thing we do not talk about enough is the depression we can all feel when we are told we have that "standard" 5 years to live. I bought into the 5 years to live when I was first diagnosed at 31 years old. It is 5 years later and I feel much better than I did 5 years ago - with my same old 23% EF. At the same time, I realize this is not typical for everyone. Some of the meds are relatively new, and the old numbers are based on decades of data. Cardiologists are definitely seeing the benefit of the current cardiology treatments. Take care, Scott B. kitchenerguy@rogers.com


Jack D's June 10 reply to Mike H's June 9, 2005 - Hey Mike, I'd think you would be fine as long as you didn't suck on the sparkplug wires while it was running. Maybe your doctor is afraid of motorcycles. Of course, if you can't ride a motorcyle then you have a real good excuse for not mowing the lawn with a regular mower or a riding mower. maddjak@hotmail.com


Jim R, June 11, 2005 - Hi all, I am 55 years old. I have been diagnosed with congestive heart failure since the first of March. I spent a week in the hospital under a general practitioner's care. I now have a heart failure specialist in a heart failure clinic. I take Coreg at 3.125mg in the morning and 6.25mg at night, Zestril at 5mg, and Lasix at 10mg in the morning. I walk twice a day for exercise and take my blood pressure and pulse after I walk and after 5 minutes rest. My blood pressure stays the same, but my pulse will rise after 5 minutes. Is this normal or should I check with my doctor? Any help would be appreciated. jlr@mei.net


Bill H's June 11 reply to Cheryl C's June 9, 2005 - Hi Cheryl, Try playing word games for improving your memory, it sure helped me. It took about 6 months to improve. It was kind of forgetting stuff, got out a lot of work, and being I would forget everything every was new all the time. Good luck. bj5250@yahoo.com


Shane R's June 11 reply to Peter S' June 10, 2005 - Hi Peter, Regarding your question about CHF and diabetes, I don't know if it's the same for all CHFers but I can answer for my mother and my heart problems. Her doctors told her that CHFers have a tendency to develop diabetes down the line, and she did about 10 years after diagnosis. My doctors have told me the same. strikeapose71@yahoo.com


Barb N's June 11 reply to Peter S' June 10, 2005 - Hi Peter, At least one recent study suggests that the anwer is yes, that CHFrs are more likely than the normal population to develop diabetes (although the odds are likely higher for diabetics to eventually develop CHF). The authors' hypothesized that the mitochondrial dysfunction and muscle cell changes associated with CHF promote insulin resistance. I have lost track of the citation for this but will try to find it. Also as Jon commented, many people taking beta-blockers show an increased incidence of diabetes. Diabetics who take beta-blockers also may show markedly increased blood sugar levels (per my endocrinologist and also my own experience, especially when I tried Coreg). protoplasm2@aol.com


Susan A's June 13 reply to Ann M's June 9, 2005 - Hi Ann, When my brother died suddenly in October of 2004 from a pulmonary embolism, I was so sad. All I can offer is that I tried to embrace the sadness and recognize it as a healthy part of grieving. Having a loss or facing one is no easy task. The other thing that keeps me going (I had cancer in 2003 to 2004 and suffered severe heart damage from the chemo - my EF is currently 31% and I'm not responding to meds as much as we all hoped) is prayer and knowing God will provide me with what God thinks I need. I'm 44. Sometimes I think I want to see 100 and other days I am simply amazed and thankful to have made it thus far. I take it a day at a time and try and live not so much for me and others, but for God, which isn't so easy either. I'm keeping you in prayer, Susan A. flobirfly@hotmail.com


Cheryl C's June 13 reply to Roger G's June 10, 2005 - And to Bill H, Thanks for the advice. I did get a laugh out of your statement that since you forget things, everything is new all the time. That kind of gives me a whole new point of view. Looked at in this light, every day may be full of new promise! I've been on line to low sodium cooking and the healthy heart store. Now I think I'm set to really get into this eating thing. The possibilities seem endless already, and I still have a Trader Joe's and Frontier Health Food store in the area to check out. Sometimes just a little push in the right direction is all I need. I can do this! Thanks all. Cheryl C. cocojo86@yahoo.com


Roger G, June 13, 2005 - Hi All, On Wednesday I have an appointment to discuss an ICD. Any comments on what to watch out for or ask the electrophysiologist would be greatly appreciated. Thanks much! rogergthree@earthlink.net


Tunny G, June 14, 2005 - Hi, Someone mentioned something about No Salt potato chips. Just to let others know, at www.zapps.com you can order no salt chips (very good tasting) and have them shipped directly to you. They have recently sent thousands of bags to our soldiers in Iraq, not just the no salt but a variety of flavors at no cost to our soldiers and will continue to do so in the months ahead. It's hard to find no salt chips (that taste as good as these) around here. Hopefully, this will help someone enjoy chips that they are now missing out on. Thanks to you Jon, for a wonderful site. tunnyg@yahoo.com
 
Jon's note: This site does not work with my browser. Maybe you could let the people at that site know this - I can't add links to sites I can't view.


Tunny G's June 14 reply to Roger G's June 13, 2005 - Hi Roger, I had an ICD/pacer implanted on May 10, 2005. You - as I did - may be wondering how bad this will be but now that it is over I can't believe how much easier it was than I thought. The main thing is to do what the doc says, as in don't lift your arm, etc. I am in my fifth week from surgery date and my incision is looking remarkably well. This was the first surgery I have had. Also, I am feeling better and am looking forward to an even better life style in the future since with the ICD I already feel more secure. tunnyg@yahoo.com


Sandy N's June 14 reply to Roger G's June 13, 2005 - Hi Roger, The only thing I can add to your list of questions is, "Where to put it?" I am a thin person and the ICD is just below my collar bone and sticks out a lot. I don't mind how it looks, it's just that my skin is so thin over it that it bothers me when I move a lot. It pinches my skin and rubs under the device. If I had more fat on my body it would not do this. Now I know, it could have been placed in my abdomen but I'm not complaining - I am thrilled to have the protection. Good luck to you. bleuskiiisgrl@yahoo.com


Scott Brown's June 14 reply to Cheryl C's June 9, 2005 - Hi Cheryl, I think you are on the right path with your sodium restrictions. A 2000mg daily sodium intake is pretty common for a fully compensated CHFer. In Canada, 2000mg is actually the daily recommended sodium intake for all individuals (not just CHFers).
     I'm not a fan of the people who contend that sodium is prematurely killing people. As long as you are vigilant on weight gain (specifically, weight gain from fluid retention), sodium ingestion is only part of the equation. Most beverages, desserts, and sugar-based candy have very little sodium in general. If you like fish, beef, pork, chicken, etc,..., it all has very little sodium if you buy it fresh. Even if a coating has 200mg of sodium, that is only 10% of your whole day.
     For snacks: Unsalted peanuts, sodium-reduced cheese, most fruits, unsalted chips, unsalted nachos, popcorn (with unsalted butter), low-sodium salsa, low-sodium homemade bread, homemade cookies, pies, cake - just check the sodium first. If you are under 400mg, you are going to come in under the 2000mg a day anyway. Unfortunately, some people are on stricter diets or are diabetic, or have fat or cholesterol considerations. If you are not in this boat, it is likely safe to follow your cardiologist's 2000mg daily limit. As my cardiologist has told me before, I am 34 years old and have CHF, not clogged arteries (we've checked). Good luck, Scott B. kitchenerguy@rogers.com


Joy K's June 14 reply to Jim R's June 11, 2005 - Hi Jim, You state that your pulse stays up after resting for 5 minutes after walking. My questions would be, how long does this increase in your pulse last? How high is your pulse? It is normal for pulse to rise during exercise even when on beta-blockers. I know that mine takes longer than 5 minutes to return to my normal baseline.
     In regard to blood pressure readings returning to your usual readings after retaking it 5 minutes after resting, this is great. Mine usually is much lower after walking and remains that way for at least 30 to 60 minutes following exercise. Can you "feel" the increase in your heart rate and do you have other symptoms? I would have some numbers and time intervals to talk over with your doctor. Enjoy your walking time. Joy. pjkachel@aol.com


Michelle A's June 14 reply to Ann M's June 9, 2005 - Hi Ann, I have been where you are, although I have a completely different disease (I have severe heart defects). What the others have told you is right on, and I agree that you'll have to find your own way through your grief.
     I was given 3 years to live when I was diagnosed with CHF at age 16. In a couple of weeks, I'll be 29. I'll never live to be the age you are now but I've worked through my grief about that. It's an ongoing process that takes a lot of patience. Most people with my defects live well into their 40s but I'm one of the few who got sick early and fast. I'm currently shooting for 35, and I live as if I will and as if I won't make it that far.
     I do a lot of things to get through the sadness and anger, which still surfaces from time to time. I do my own research (long live Jon!) and I explore any and all possible treatments that might help me, including surgery, transplant (I'm not sure if I want to go this route, but I have time to decide since I'm not sick enough for a tx yet), stents, pacers and meds. I use what my docs tell me as a starting point, and I know that they're wrong more often than they'd have me believe.
     Personally, I need to exercise as much control over my life as I can. I work very hard on my low-sodium, low-fat diet, I exercise as much as I can, and I take excellent care of myself. I think this is why I've lived this well with CHF for 13 years. I've also made all the decisions and preparations for death. Whether I die suddenly or slowly, the paperwork is all filled out and my family and friends know my wishes, which are well documented in my chart.
     Many of us have been where you are now and survived. I know it seems hopeless now but you have a lot more choices than you think. It's up to you to live the best way you can, and you can do it. We're here to support you! miship@hotmail.com


Jack D's June 15 reply to Scott Brown's June 14, 2005 - Hey, Homemade cookies, cakes, bisuits, rolls, pancakes, waffles and anything else that rises and doesn't use yeast alone as the leavening agent contains sodium and usually way too much sodium - baking soda, baking powder and everything else that contains the word sodium. It's a low sodium diet, not a low salt diet. maddjak@hotmail.com


Dave S, June 15, 2005 - Hello, Findings in the June 15 issue of the Journal of the American Medical Association say that in people who have an ICD because they have a history of irregular heartbeats, fish oil supplements may increase their risk of some dangerous heart rhythm abnormalities. As someone who has a defibrillator (replaced last Thursday), has an irregular heart beat and heart failure, and who takes fish oil supplements, what is the risk benefit ratio in not taking fish oil? soslowsky@qwest.net


Roger G's June 15 reply to Tunny G's June 14, 2005 - Hi Tunny and Sandy, Thanks for the suggestions and also thanks to those of you that sent e-mails direct. I get the ICD July 7th. This is an amazingly small device, only 2 inches by 1/4 inch thick. My electrophysiologist (try to spell that the same way twice) is a super guy! He did my EP study a few years ago and he is still as excited about medicine and technology as I remember him being. He even let me choose the date that was convenient for me. He also went into extreme detail about why I can or should have the ICD now and not in earlier years, and I wanted to pass that along to you here. Please keep in mind that this is what I remember him telling me a few hours ago so I may have forgotten a detail or two already.
     Studies that have been conducted over the past few years have concluded that, for non-ischemic CHF patients with an EF of 30% or lower, we live longer with an ICD. The studies concluded October, 2004 and the research was worked through the FDA system by April, 2005. This includes approval and funding by Medicare, which means all insurance companies now must cover the procedure and device. This is not true for an EF over 30 or some ischemic CHF, and only applies to the defibrillator function, not the pacing functions. Summary: If you have CHF, have not had a heart attack, and have an EF of 30 or lower you may wish to discuss an ICD with your cardiologist. rogergthree@earthlink.net


Jon, June 15, 2005 - Hi everyone, I just have to weigh in on this because I have strong - very strong - reservations about the way this study's results are being used. Roger, this is not aimed at you. <g> You are passing on information that may in fact be very useful to many people. I especially appreciate how you phrased your advice - excellent! I still feel the need to rant a bit.
     If you have non-ischemic CHF (meaning no CAD) and have no risk factor except an EF under 31%, why rush into an ICD? I'll elaborate a bit but not too much because I'm very tired.
     Many CHFers in the above situation will see their EF improve to 31% or more if they stay on proper drug therapy and also make proper life style changes, including proper exercise, proper diet, no smoking, no drinking, and all the other steps listed in The Manual. If such a CHFer runs to get an ICD when his EF is under 30% and then 12 months later, the steps I describe have increased his EF to 45%, he is stuck with a device in his body that has leads directly hooked into his heart - for good. Why is this a good thing? What are his risk factors now for sudden cardiac death? No greater than most of the general population, actually. That ICD is permanent, though.
     It is a proven fact (the literature showing this is huge) that doctors don't properly maximize drug treatment and don't properly educate their patients to make good life style changes for CHF. Yet, they want you to implant a permanent, invasive, and expensive device into your body right now.
     Now, if you have another risk factor such as EPS results, history of dangerous arrhythmia episodes, family history of sudden cardiac death, etc,..., I do recommend seriously considering that ICD! I just want to make the point that this is a very big decision. If medical thinking were this way when I was diagnosed, I would have had an ICD immediately. Here I sit with an EF of 55% and no heart rhythm problems at all. I was non-ischemic, with a very low EF of 13% at the time, no heart attack, no CAD. It took years for my EF to get above 30% but it did. What risk factors do I now have suggesting I need an ICD? None. However, with current thinking applied then, I would now have one anyway.
     So when your doc recommends an ICD, question everything, educate yourself to the maximum degree possible, then get a second opinion, before proceeding. I would. Before someone says I don't know what I'd do, please note that I refused heart transplant when told it was necessary for me, had my doc raise my CHF meds to double target dose and slowly improved out of transplant qualification. I do make my own decisions and I do so based on a lot of self-education, careful thought, and common sense.
     Does any of this apply to everyone? Nope. However, like I said, if your only risk factor for sudden cardiac death is low EF, I would think ICD implant over before having it done. Also - Medicare has its own set of guidelines that do not - I repeat, do not - require them to pay for ICD implant for everyone with a low EF! They also make exceptions to their own guidelines! (think of how SSD does this) Don't assume Medicare will pay for your device - be sure - first!
     End of rant, Jon.


Debbie M, June 15, 2005 - Hello everyone, I am a spouse of a CHFer and just ran across your site. I have done so much research, that it is refreshing to hear from the "other side." I will send a donation also - it looks like a lot of work has went into this site.
     We have been living a medical nightmare for the past two years. My husband has had problems all his lif, but got bad two years ago. The surgeon told me he needed an aortic anuerysm repaired. This was his third open heart surgery and he told me to get my affairs in order since he wasn't going to survive the surgery. So I didn't tell my husand the outcome. If I did, he wouldn't have had it done and would have had a major stroke at that point.
     To make a long story short, here we are two years later and he is still with us. For all the heartache I feel, I should be grateful that his Social Security Disability was approved for the first time since from what I've read on site and what I've heard, it's very difficult to get approved. Are there any spouses out there that can give me any advice on how to cope?
     They keep telling me his heart failure isn't severe, but I've run him down to the emergency room so many times, it's not funny. He is on oxygen 24/7 now and his diaphragm is paralyzed from the surgery. We are so young to have these problems. I'm at my wit's end. We got a copy of his blood test results and they came back very reasonable for someone in his condition. We are so frustrated. We feel like they aren't telling us everything. We have run him for every test and everything comes clear. I am reaching my breaking point the longer this goes on. Does anyone else feel like that? Any advice?
     I'm so tired of living like this. I've prayed, thought positive, we can't talk about the situation much in front of our son. He has a hard time dealing with it too. Our lives are so limited now. Everything involves such limitations that it's heartbreaking but the doctor's can't give me an answer on why he's so congested and wheezing all the time and confused. I feel like such a fool and the doctors probably think I'm a nut. Any advice would be appreciated. Thanks for listening. Debbie. dmcconnell@unioncentral.com


MaryAnn H, June 15, 2005 - Hello all, Does anyone have any opinions on using elliptical equipment instead of treadmill for exercise for someone with with IDCM? My son says he can only do about 20 minutes on the elliptical instead of the 30 to 35 minutes with the treadmill. He feels fine using both. Any imput would be appreciated. mahall1958@hotmail.com


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