The paperwork never ends The Archives
November 16-31, 2003 Archive Index CHFpatients.com

Tim P's 11-17 reply to Jon's 11-14     life could get interesting
 
Kate's 11-17 reply to Peggy's 11-14     humans are tough
 
Susan's 11-17 reply to Tim P's 11-14     perplexing questions for me also
 
Jon's 11-17 reply to Susan's 11-17     making hard decisions
 
Kim 11-17     what does this report mean?
 
Denise's 11-17 reply to Steve's 11-13     workplace rights and restrictions
 
Michelle A 11-17     could lisinopril be causing this?
 
Jon's 11-17 reply to Michelle A's 11-17     it's possible
 
Vee 11-18     is apirin also risky?
 
Jon's 11-18 reply to Vee's 11-18     yes, but not as much
 
Bubba's 11-18 reply to Pam's 11-11     pain, tingling, numbness in legs
 
Tim P's 11-18 reply to Jon's 11-14     am getting a second opinion
 
Susan L's 11-18 reply to Jon's 11-17     some more questions
 
Jon's 11-18 reply to Susan L's 11-18     for what it's worth
 
Greta's 11-18 reply to Gene W's 11-13     high altitude pulmonary edema
 
Michele's 11-18 reply to Jon's 11-17     ACE inhibitors and more
 
Tony P 11-18     could my CHF be back?
 
Jon's 11-18 reply to Tony P's 11-18     possibly
 
Ruthie A 11-19     seek experiences with statin drugs
 
Kate's 11-19 reply to Susan L's 11-18     medical center possibilities
 
Tim P 11-19     I am sick and tired of it all
 
Jon's 11-19 reply to Tim P's 11-19     sooooo?
 
Darric 11-20     has anyone tried Smoke Away?
 
Pat W 11-20     how does hyperthryroidism relate to CHF?
 
James 11-20     pacemaker experience
 
Joe S' 11-20 reply to Tim P's 11-19     coping with illness
 
Pam 11-20     some hypertension information
 
Laurie 11-20     does anyone get dizzy? Please respond
 
Myrtle C 11-20     ICG testing and an update
 
Jon's 11-20 reply to Myrtle C's 11-20     BioZ impedance monitoring
 
Michelle's 11-20 reply to Tim P's 11-19     never give up! & more
 
Cheryl 11-20     why am I not getting better?
 
Jon's 11-20 reply to Cheryl's 11-20     some resources to check out
 
Robert 11-21     these meds are killing me!
 
Jon's 11-21 reply to Robert's 11-21     there are alternatives - some possibilities
 
Linda's 11-21 reply to Tim P's 11-19     don't ever give up! & more
 
Scott B's 11-21 reply to Laurie's 11-20     this should pass & you'll feel better
 
Pat W 11-21     taking control feels good
 
David W's 11-21 reply to Laurie's 11-20     find the cause if you can
 
Beth G's 11-23 reply to Tony P's 11-18     I don't know about these symptoms
 
Jon's 11-23 reply to Beth G's 11-23     symptoms possibilities
 
James' 11-23 reply to Pat W's 11-21     it's more than the physical
 
Pam 11-23     seek thoughts on lower heart rate
 
Pat W 11-24     you guys have really changed me
 
Peggy's 11-24 reply to Darric's 11-20     stopping smoking & a question for all
 
Barbara 11-25     seek Atkins' experiences
 
Jon's 11-25 reply to Barbara's 11-25     common Atkins' mistakes
 
Jacky 11-25     can I take ibuprofen?
 
Jon's 11-25 reply to Jacky's 11-25     ibuprofen and heart failure
 
Jacky's 11-26 reply to Jon's 11-25     pain relief and heart failure
 
Jon's 11-26 reply to Jacky's 11-26     pain relief and heart failure
 
Donna V 11-26     seek ideas about Coreg dose, dry hair & more
 
Natalie K's 11-26 reply to Barbara's 11-25     Atkins' eating experience
 
Barbara M's 11-26 reply to Jon's 11-25     Atkins' eating plan
 
Jack D's 11-26 reply to Barbara's 11-25     Atkins' eating
 
George G 11-26     can drinking cause CHF?
 
Jon's 11-26 reply to George G's 11-26     drinking and CHF
 
Margaret D's 11-26 reply to Jacky's 11-26     Tylenol and heart failure
 
Jon's 11-26 reply to Margaret D's 11-26     Tylenol and heart failure
 
Betty 11-26     what should I do?
 
Jon's 11-26 reply to Betty's 11-26     some possibilities
 
Joy's 11-26 reply to Donna V's 11-26     hair loss and changes
 
Pat W R's 11-26 reply to Donna V's 11-26     hair loss and changes
 
Craig 11-28     why blame Coreg? & more
 
Jon's 11-28 reply to Craig's 11-28     Coreg & more
 
Pat W R 11-28     should I take Coumadin?
 
Jon's 11-28 reply to Pat W R's 11-28     taking Coumadin
 
David L 11-28     seek New York area CHF doc
 
Curt H 11-29     where can I buy these supplements?
 
Jim 11-29     what is factor five Leiden?
 
Catherine L 11-29     can I reduce my beta-blocker dose?
 
Jon's 11-29 reply to Catherine L's 11-29     reducing beta-blocker dose
 
Willie 11-29     Aldactone didn't work for me
 
Jon's 11-29 reply to Willie's 11-29     an unusual choice
 


Tim P's November 17 reply to Jon's November 14, 2003 - Hi Jon, Thanks for the info and advice. I don't know what my QRS interval is or EF. They haven't told me and I didn't know enough about all this to ask. Obviously, these are questions I need to ask. All I know is that they were so concerned about my LBBB when my first EKG was taken, they made me lie down and admitted me immediately to a critical care unit.
     Ironically, one of the owners of the family-owned business I work for had a pacemaker implanted last year and has the same cardiologist I do. I just found this out today in a conversation with his wife. Unfortunately, if a pacemaker is needed in my case, it means my job description or career would completely change, as I work on/around high power broadcast equipment. My boss is no longer allowed within any "hot zone" of a broadcast transmitter site since his pacemaker was implanted. Life may about to become really interesting.
     I don't know whether a valve is leaking or not; they didn't mention that at any point, and I had a cath done and it revealed I have perfectly clear arteries. I do take an ACE inhibitor: Lisinopril at 2.5mg. They also prescribed furosemide at 20mg every other day and my PCP prescribed Zoloft as an antidepressant (I didn't know I was depressed) after my diagnosis, which he said I would be taking for a month or two.
     I am 32 years old and otherwise healthy. Six years ago I had an EKG done after I had some episodes of shortness of breath and dizziness from exertion. They concluded I had a pocket of water around the heart (can't remember the technical term for it). A stress test revealed that everything else was normal, so nothing else was ever done. My cardiologist says that my EKG from six years ago and my present one are completely different.
     Thanks again for your help and for creating this site and board. It certainly is a wealth of good information, and may very well be a lifesaver for many. Tim. beacon@yougothere.com


Kate's November 17 reply to Peggy's November 14, 2003 - Dear Peggy, Maybe some of you in my generation will remember a little cigarette commercial that went, "Have a Lark, have a Lark, have a Lark today." I did. I quit in 1988. Are there times I still want one? You betcha.
     When I think about what my poor body has been through, I wonder at its resiliency. I spent my first 18 years in Niagara Falls, New York, then home of Hooker, Dupont and others. Even on the hottest nights windows were closed while they pumped chemical waste through sewer systems. You can't even imagine the stench. Explosions were not uncommon and many, many days the sky was multi-colored from pollutants. I went to Hyde Park Elementary School and the Hyde Park dump holds the largest volume of dioxin waste in the world.
     After college I moved to Rochester, New York, and was later to learn that the air quality was the most toxic in the country and all the while we bought cameras and the film, and snapped all those pictures of the kids. To add insult to injury, just in my early 30s, my body was blasted with toxic chemotherapy.
     I look back now and think of the duck and cover exercise we did in school to protect us in case of a nuclear attack from the Russians. Maybe what we needed to be protected from was the cloud of gas right outside the windows. I want to bear testament to how foolish we humans can be, but also to bear witness to how the human spirit keeps on keeping on. Kate. tothymecottage@frontiernet.net


Susan's November 17 reply to Tim P's November 14, 2003 - Hi, I share Tim's concerns and his comments prompted me to write. I was diagnosed a the end of July, 2003. I have CHF and DCM with an EF of 15 to 18%. I have significant mitral valve leakage. Since starting meds, my heart is not as enlarged and is working more efficiently. However, I am not yet back to work. I am weak and the meds tire me out further.
     I have a rewarding, mentally challenging insurance career job involving substantial stress. Fortunately, I still have sick time left, but frankly I dread going back to work. I fear that I will not have the stamina to perform well. Just thinking of work combined with home chores tires me out.
     I am beginning to wonder how much improvement I can expect since my valve is leaking. How long before I can expect significant improvement? Or am I not being realistic about my condition? The cardiologist seems to evade such direct questions, why? Is it really that he just doesn't know? susanlocurto@hotmail.com


Jon's November 17 reply to Susan's November 17, 2003 - Hi Susan, You won't find anyone here giving you definite answers about your future either - we have no way to know how you will actually do. We can share our own experiences, quote clinical trial results, repeat statistics, and just plain guess. Like The Manual says, no one can really know what's in store for you. I do address this briefly at www.chfpatients.com/ssd.htm#canwork.
     One big question with leaky heart valves is: " Did chronic valve leakage over time cause your heart failure?" If the valve dysfunction caused your CHF, there is a reasonable chance that repairing your valve surgically will seriously improve your CHF. Also, see www.chfpatients.com/surgery_old.htm#alternatives.
     If your valve leakage did not seriously contribute to your developing CHF, and your heart is currently enlarged, then reverse remodeling from taking ACE inhibitor and beta-blocker may greatly reduce your valve leakage. In this case, as the heart enlarges, its shape changes and the valves no longer "fit" properly. As the heart regains a more normal size and shape, the valves function better again.
     As far as going back to work goes, I believe it depends on your CHF cause, how quickly after your heart started to weaken you got diagnosed and treated, and how wise your treatment and life style changes are from the start. If the cause can be corrected, get it done. See a heart failure specialist for your treatment! Stick with the meds and if you can't handle one, try another. Stick with a low-sodium diet, quit smoking, don't drink, and learn to budget your energy.
     Stress isn't so much a factor in my view, as how you handle it. Some people can learn to let it roll off them and others cannot. You have to decide which group you fit and if necessary either make some emotional changes or consider less stressful situations.
     If you keep working, will you do as well as pre-CHF? Maybe not. Can you live with that? Is performing perfectly more important than keeping the job, staying busy and involved, etc,...? These are your calls. Sit down every day and write your thoughts down on every such question that comes to mind, then form other questions and address them. I wish I had the magic eight ball, but I don't. ;-) Jon.


Kim, November 17, 2003 - Hi, Well, I am very new to a board like this but I am glad I have found you. Recently, SSA Disability gave me my medical records back after we won our case on my back and neck injuries involving a car accident. I started reading them only to find more disturbing news. One report says, "Radiology Report: Prominent and indistinctness of the central bronchiovascular markings, compatable with pulmonary venous hypertension and mild heart failure/volume overload. Also note a heart of borderline size."
     What is all this? Of course I am a little freaked by all of it since my neurosurgeon has never mentioned anything in all of the years of seeing him. All of this apparently happened according to the reports in 2000. Any suggestions? Thanks, Kim. edwards@pennyrile.net
 
Jon's note: See a heart failure specialist immediately to find out what your situation is right now.


Denise's November 17 reply to Steve's November 13, 2003 - Hi, Here are a couple of web sites that might be helpful: www.usdoj.gov/crt/ada/qandaeng.htm and some directions intended for your employer at www.jan.wvu.edu/media/Heart.html. I am in the process of negotiating with my workplace so I will refrain from too many comments at this time.
     Please know your rights and limitations. I highly suggest you go to the CONTACT information on the JAN sight and call Job Accommodation Network. They have an 800 number. They have the most knowledgeable and helpful staff! These people addressed all of the issues that I had and explained just what my rights were according to the law. seacruiser@hotmail.com


Michelle, November 17, 2003 - Hi Jon, You are an expert so I thought I'd ask you. What do you know about Lisinopril? I am on 10mg and 2 weeks ago I started feeling very tired. It progressed until this weekend, when I was too tired to stand up for more than a couple of minutes. I stopped taking it and after 2 days, my energy has returned. I believe my exhaustion was caused by Lisinopril, and I will be talking to my doc this afternoon.
     I wanted your opinion on this. Does Lisinopril do this to many people? Could something else be causing my symptoms? I have CHF due to a severe heart defect, and also have a leaking tricuspid valve and an atrial arrhythmia. I'm due back at cardiology the first week of December. My heart meds are digoxin, Lasix, ASA, Lisinopril and potassium. I am hoping to go back to Vasotec because I was on that for several years with no problems. What do you think? mianders@hotmail.com


Jon's November 17 reply to Michelle's November 17, 2003 - Hi Michelle, I am not a doctor. This is usually a matter of blood pressure with ACE inhibitors and is often dose-dependent so reducing dose reduces the fatigue and weakness. If your current lisinopril dose is equivalent to your previous Vasotec dose, go back to Vasotec and see what happens.
     However, keep in mind that cause and effect with CHF are not always as obvious as they seem. This may have nothing to do with your meds at all, so you definitely need to see your heart failure specialist for an exam.
     Finally, I really don't recommend stopping a heart med cold, with or without your doctor's knowledge or approval. It's just a really bad idea, in my opinion. Jon.


Vee, November 18, 2003 - Hi, Does the warning against taking NSAIDs for CHFers apply to aspirin? imagine_@earthlink.net


Jon's November 18 reply to Vee's November 18, 2003 - Hi Vee, In 2 of the 3 studies, yes. However, as far as I can tell from the data I have, aspirin showed lower risk than most other NSAIDS, including Tylenol (acetaminophen). Also, a study in Chest this year showed that in CHFers taking an ACE inhibitor, also taking aspirin did not decrease survival rates; that one did not address just worsening CHF, though. Jon.


Bubba's November 18 reply to Pam's November 11, 2003 - Hi, I am having tingling and some numbness in my feet also, mostly my left foot. Most of the pain I feel in my legs is beside the knee. I had decided this was just due to the fact I went back to work after 3-1/2 years. Because of your message, I will look into it a little closer. I just never thought it could be because of my CHF. hford51@aol.com


Tim P's November 18 reply to Jon's November 14, 2003 - Hi Jon, I neglected to tell you that my doctor said from the beginning that he thought a virus (possibly from years ago) was the cause of my DCM. Anyway, as per the suggestion of about a dozen people thus far, I am going for a second opinion, to get some better answers. Thanks again for your great site and advice! Tim. beacon@yougothere.com


Susan L's November 18 reply to Jon's November 17, 2003 - Hi, Your response was incredibly direct. You really are a great listener. Your info was very helpful to me and I hope to all who are reading. Just to let you know, I do take excellent care of myself, always have (thin, non-smoker, exercise regularly, drank rarely). That is partly why this is all so frustrating.
     One thing you encourage is finding a heart failure specialist. I found none in our area (Rochester New York) in your site's listing. I brought that up to my cardiologist and he said a heart failure specialist is one who does heart transplants. Is that what I should be looking for?
      I asked my general practitioner and he discouraged me from getting a second opinion. He said it would just confuse me as far as what to do. One outstanding issue, as you so accurately picked up on, is did the valve leakage cause the heart failure or did the cardiomyopathy cause the significant valve leakage? According to this cardiologist, it would be very dangerous at this point to try to address the valve issue as the "frame is weak." As an aside, on my BNP report, it shows a low anion gap. Any idea what that signifies? susanlocurto@hotmail.com


Jon's November 18 reply to Susan L's November 18, 2003 - Hi Susan, A heart failure specialist is a cardiologist whose clinical (day to day patients) practice is at least 50% CHFers. In other words, he treats mostly CHFers. Most university hospitals have a CHF clinic in them now, where the CHF specialists practice. Most large cardiology practices also usually have at least one cardiologist who treats most of the heart failure patients.
     A transplant specialist is literally called a "transplant cardiologist" and is part of a "transplant team." A regular cardiologist is called a general cardiologist and one who specializes in the heart's rhythm and electrical system is an electrophysiologist. An interventional cardiologist mostly performs procedures like angioplasty.
     Your general care doctor should be ashamed of himself. If any of my doctors told me not to seek a second opinion, I would fire him and find a real doctor! Does he really think you are incapable of educating yourself about your condition? That's downright insulting. I really do feel that strongly about it.
     The valve surgery issue is not moot because your heart is weak. Think about it. If it is valve dysfunction weakening your heart, how will your heart get much better without fixing the valve? Trial data backs up this view.
     A low anion gap is out of my usual research area. It can mean out of balance electrolytes, low albumin, or it can suggest another illness. I would be sure my general care doc is having me tested for any potential illnesses it can represent as well as checking my blood work.
     As to being a good listener, my wife might disagree. ;-) Jon.


Greta's November 18 reply to Gene W's November 13, 2003 - Hi Gene, Your altitude problem has a medical term. It is called high altitude pulmonary edema. The higher altitudes cause your heart to work harder, reducing the function of your heart and allowing fluid to build up.
     I experienced this last September, 2002, prior to my CHF diagnosis. We went out west on vacation and spent a night at Silverton, Colorado. The elevation was above 9,500 feet. I didn't sleep much that night. The next day, when we left and went down to the 5,000 to 6,000 foot level, I felt much better. I live in Arkansas so altitude here is not a problem.
     I suspect you are having problems at the lower altitudes because, besides CHF, you also have lung problems. Other than moving, your only other option seems to be an oxygen tank. I would do some more investigating. Good luck. Blessings, Greta. gjohnson@arkansas.net


Michele's November 18 reply to Jon's November 17, 2003 - Hi, Thanks for the reply, Jon. I know that stopping a heart med cold is a bad idea but I was desperate. I've never done it before, and I've been on CHF meds for over 11 years.
     I know you're not a doc, but I rely on you to know where to find good info on meds, symptoms, current research, etc. I think most of us do! I come to your site because I just don't have time to spend hours on my own looking for and evaluating the literature. I've read your evaluations of the literature and the literature you evaluated, and I agreed with what you had to say, so I trust your opinion. I also know that they are opinions, not medical advice. I'm not your run of the mill CHFer, because I have CHF due to Transposition of the Great Arteries. Failing or not, my heart works differently. I have to rely on pediatric cardiologists because the adult docs won't touch me.
     However, when it comes to meds, the CHF meds are all the same for me except that I can't take beta-blockers. My doc said that I might not be able to go back on Vasotec because it might not be strong enough for me. For now, I'm back on 5mg Lisinopril, and will have labs done. My doc will conference with my cardiologist, because I'm not due back to cardiology until December 2nd. Thank you for your advice, and next time I will be more clear when I submit a post. mianders@hotmail.com
 
Jon's note: Remember there are lots of choices of ACE inhibitor so don't hesitate to ask for a switch if one really messes you up!


Tony P, November 18, 2003 - Hi, It's been awhile since I posted. I am having difficulty breathing while lying down lately. I was diagnosed with IDCM 4 years ago and now seem to get a lot of stomach problems, like gas (belching), stomach pain, and shortness of breath. I have increased my Lasix to 120mg twice a day. I also take 40mg Vasotec, 50mg Coreg, 0.125mg digoxin, and 5mg warfarin. My energy level is okay but not like before. Jon, could I be in heart failure? Thanks again and God bless you for your site. tonyp@rcn.com


Jon's November 18 reply to Tony P's November 18, 2003 - Hi Tony, It's possible. I would reduce the sodium in my diet to 1000mg a day for a couple of weeks and call my CHF specialist. When taking extra Lasix, it is important to also take extra prescription potassium and if you keep taking extra Lasix, to have your electrolytes checked. It could also be from something else, though, so if your cardiologist doesn't think your heart is acting up, I would seek me general care doctor about it. Jon.


Ruthie A, November 19, 2003 - Hi everyone, I have read that several of you take statins of one variety or another. My endocrinologist (diabetes doc) is prescribing Zocor at 20mg to start. Do any of you who are taking Zocor have any side effects with it? Have you had any medication interactions that would require a change in meds? I have read all the technical data and am now looking for experiential information. Thanks for your help. Ruthie A. rlaba51@yahoo.com


Kate's November 19 reply to Susan L's November 18, 2003 - Dear Susan, Strong Memorial Hospital has both a heart failure center and a heart transplant unit. Your cardiologist should certainly be recommending them to you. In addition, Rochester General is listed as one of the top 100 heart hospitals in the USA and actually has better ratings with healthgrade.com when it comes to treating heart failure and other heart conditions. Both are known as top notch facilities.
     One note of caution: If you don't like the environment of a teaching hospital, you might want to avoid Strong. All those pesky residents poking and prodding can annoy some people. Personally, I like having a group of handsome young men hovering. Please insist that your cardiologist refer you to one or the other of these facilities. Don't be pushed around by the white coats. I'm reminded of a line from an Anne Sexton poem entitled "Doctors":
     The doctors should fear arrogance more than cardiac arrest. If they are too proud and some are, then they leave home on horseback but God returns them on foot. Kate. tothymecottage@frontiernet.net


Tim P, November 19, 2003 - Well, I went to the ER yesterday afternoon because my groin area swelled up and became very painful. My cardiologist was worried that I may have an aneurism from the heart cath. While I was there I described some of the other things I have been dealing with (extreme fatigue, headaches, dizziness, shortness of breath). They did a chest x-ray and told me my heart was normal size. They said my lungs sounded clear, but to make sure there wasn't a clot, they did a CT scan on my lungs and found nothing.
     Bottom line: They told me my symptoms were all in my head. In other words, they said it's anxiety. I can't believe they told me this! On top of that, I am out of Coreg and my wife went to refill it yesterday and my insurance suddenly decides we have a $150 deductible, so they want $100 for the Coreg, plus more money for the others I need refilled. I am in disbelief.
     My wife tried to set me up with an appointment with another cardiologist at a different hospital and my insurance said I needed a referral from my family doctor. I doubt I'll get that since my family doctor and my cardiologist work in the same med center and seem to back each other up.
     I am sick, sick, sick of it all. I am tired of doctors who won't listen when I tell them how I am feeling, I am tired of insurance companies changing the rules and trying to get away with paying as little as possible. I am sick of feeling sick. I ran out of Coreg and Lisoprinil yesterday, and I really don't care at this point. I feel better today since I haven't taken anything since yesterday morning. My cardiologist hasn't wanted to try any different meds than he prescribed originally, and I'm convinced at this point that some combination of the meds is the source of my fatigue and other symptoms.
     I am just thoroughly frustrated with the whole thing. beacon@yougothere.com


Jon's November 19 reply to Tim P's November 19, 2003 - Hi Tim, So your response to arrogant, ignorant doctors and tightwad insurance companies is to put your health at risk by stopping meds that are dangerous to stop cold? See www.chfpatients.com/coreg.htm#stoppingbetas. Chest x-rays are not reliable for spotting heart dysfunction in CHFers; see www.chfpatients.com/text/chest_x-ray.txt. Stopping ACE inhibitors and beta-blockers also leads lots of CHFers right back into CHF - worse than before; see www.chfpatients.com/archives/archives_search.htm#mortality_testing_and_numbers. That's why the official treatment guidelines say to keep taking them even if your numbers go back to normal range; see www.chfpatients.com/faq/guidelines_99_short.htm.
     Get the idea? Being tired of it all doesn't mean that giving up will help. You have to learn to watch out for yourself and then you have to do what you have learned. Be your own advocate. The "it's all in your head" line is something I have also heard - the doctors were wrong and because I was a strong advocate on my own behalf, I got correctly diagnosed and treated - in time.
     You can give up if you really want to do so but it will cost you down the line. Your cardiologist is a dud - get another one, a heart failure specialist. Get back on your meds. Do it or pay the price, now or later. It's your life - how are you going to take care of it? Jon.


Darric, November 20, 2003 - Hi, I was wondering if anyone has used Smoke Away to stop smoking. I really need to stop but I need help with it. I have had some friends that are not CHFers that have used it to quit and I want to try it. When I asked my doctor he didn't know anything about it so I thought I would ask you all before I made my decision. dwbenson2002@msn.com


Pat W, November 20, 2003 - Hi, I just ran across this web site and am very impressed with the knowledge here. I was first diagnosed with peripartum cariomyopathy in 1996 at age 35. It went away after a couple of years. I live in a small town and the doctors just didn't have the knowledge here. I was taken off all meds when my EF returned to 58%.
     Well, earlier this year I began having symptoms. I went in for a checkup and was told that my symptoms were back. Six months later I was diagnosed with Graves Disease (hyperthyroidism). My quandary is that I don't know what to look for anymore. I have very low energy, shortness of breath, and trouble sleeping. In your opinion, are these two diseases related? Is my overactive thyroid limiting results I could see from my heart meds? I take Coreg, lisinopril, Coumadin, Lasix, potassium, and methimazole.
     The side effects from one disease are a red flag for the other. Both doctors tell me to see my primary care physician. Of course, I see them more than my general physician. If you could give me any info on the relationship of the two diseases, I would appreciate it. I have gotten inspiration from this web site. Thank you very much. rollnright@cableone.net


James, November 20, 2003 - Hi, As some of you know, I received a nifty little zapper back on Halloween. My pacemaker resynchronizes my ventricles and has a defibrillator "just in case." Last week I went in for my one week follow-up - 12 days after implant - and they told me that all appears well. The process was uneventful. They put the pod over my left breast to interrogate the device and after about 10 to 15 minutes had all the data they wanted. My QRS is about 140 ms; unpaced it was at 148. QRS in paced subjects is typically higher than normal. The unit is set to give a full shock if my heart rate hits 188 beats per minute.
     This was pretty much the extent of my visit with one exception - they removed the steristrips over the incision. Next time I will tell them to leave the strips on - there is more damage to my skin from these than the surgery itself. The incision looks pretty good though, at least.
     For what it's worth, I feel no different than before the surgery. I have had a couple of spells with difficulty breathing although they seem to be further spaced than before; it's too early to tell for certain. The one thing I did try, rather than take the elevator from floor 1 to floor 4, I took the steps, 2 at a time, 6 flights worth. Ironically enough, it didn't wind me at all until I started walking up the handicap access ramp outside the stairwell. James. jnj@spamcop.net


Joe S' November 20 reply to Tim P's November 19, 2003 - Hi Tim, I was raised by the worst hypochondriac in the world. My father refused to allow her to complain constantly, so she took me to the doc about once a week. Although I know my surgery went fine and I am doing very well, I still cling to my old trained anxieties. Will I ever get well? I sure hope and pray so. I found I have to occupy mysef with various projects, especially at night. Good luck, Joe S. jes@gbis.com


Pam, November 20, 2003 - Hi all, This is an article I found about aldosterone elevation as a primary cause of hypertension. It gives as a simple test the administration of spironolactone. If blood pressure comes down on spironolactone and nothing else brings it down, you may have secondary hypertension caused by an elevation in aldosterone.
     This may be why my blood pressure was so hard to control and why none of the meds was very effective for long. I'm posting it to several of the medical sites I subscribe to, in hopes that someone else will benefit from this information before they get a diagnosis like DCM with Stage D CHF. See www.merck.com/pubs/mmanual/s...chapter9/9c.htm.
     A good article about eplerenone is at www.hon.ch/News/HSN/512487.html. I can't find any reason these effective medications could not be started before significant heart damage occurs. Hugs, Pam. spirlhelix@yahoo.com
 
Jon's note: Eplerenone was approved for hypertension before it was approved for CHF so it should now be a primary hypertension drug - if doctors are on the ball.


Laurie, November 20, 2003 - Hi, I am new to posting on this board. I was recently diagnosed with dilated cardiomyopathy. I was told my EF is 32%. I was wondering if any of you who have this condition experience dizziness, and to what extreme.
     I have had a few episodes of dizziness or vertigo, I'm really not sure. All I can explain is that the feeling is like you were drunk and laid down in bed and looked at the ceiling - the room and things in it are spinning. I haven't drank in many years, so I know that is not the cause of this. I just wondered if anyone else experiences this and how severe and often. Thanks for your help and for all the wonderful posts I get to read every day. Laurie. lrp3lmp@aol.com


Myrtle C, November 20, 2003 - Hi Jon, I haven't been here for some time. I had an ICG test yesterday at my cardiologist's office. You may know about this Jon, but it finally gave my cardiologist information he'd never gotten from any of the other standard tests. It is called a ICG monitor and shows my hemodymanic status. This is how they monitor the astronauts.
     It showed that my systemic vascular resistance was much too high and my cardiac index, cardiac output, stroke volume, stroke index, and stroke volume were low. My acceleration index and velocity index were also low. He has increased my Lasix and added Norvasc. I had a reaction (depression) to Norvasc once before. Pray for me that this will help me without any side effects. God be with us all, Myrtle C. (I am using a new address) omieof3@yahoo.com


Jon's November 20 reply to Myrtle C's November 20, 2003 - Hi Myrtle, This is CardioDynamics' BioZ system. It doesn't give info that other tests don't give, but it gives a lot of info non-invasively in the doctor's office, which is its advantage. Many doctors don't consider it as precise as other tests and so are slow accepting it. My own CHF doc currently believes it is valuable for monitoring a patient over time (serial measurements to see trends), but he prefers standard testing for the initial measurements. Jon.


Michelle's November 20 reply to Tim P's November 19, 2003 - Hi Tim, I agree completely with Jon. I had a similar experience last summer when I had my first CHF hospitalization. I had very similar symptoms to the ones you described and they did the same tests on me, looking for a clot. The only reason they admitted me was because of my echo results. I have a congenital heart disease and since the adult cardiologists didn't understand more than my basic anatomy, they tried to send me home. I actually begged them to admit me, and they did on the basis of my (very abnormal) echo.
     Once I got to the cardiac floor, the admitting doc told me that everything was all in my head. "Yes, you have Transposition," he said, "but not CHF, since your BNP was 18." He also said, "Besides, you're too young to have CHF." I'm 27, and right on schedule with CHF because of my heart defect and the surgery I had as a toddler - shows how much he knew. He refused to give me meds and told me that he was "babysitting" me until the pediatric cardiologist came the next day.
     Of course, Pediatric Cardiology came and gave me this horrible report: "You have CHF, there's not a whole lot we can do except meds, we'll just have to hope they work." I didn't get the IV Lasix I desperately needed until the afternoon after I was admitted (almost 24 hours). The adult cardiologists finally became convinced that it wasn't all in my head when I lost 7 lbs in 12 hours. I suffered quite awhile until they were finally convinced.
     You absolutely have to be your own advocate! Most of the heart patients I've talked to have stories just like yours. If you won't fight for you, who will? Don't give up, because with some work, it can get a whole lot better. Get back on those meds, and if you have to, find a new doc. Keep fighing until they listen.
     By the way Jon, I'm back on Lisinopril until I see my cardiologist in a couple of weeks. mianders@hotmail.com


Cheryl, November 20, 2003 - Hi, I am new to all of this. I am trying to find why and how I got CHF. I had pneumonia 2 years ago and now I end up with heart failure. I went to the doctors the other day and they said my heart was at 20%. They raised my amiodarone dose - why is it not helping my heart? I have seen stars when I bend over. cool2003c@aol.com


Jon's November 20 reply to Cheryl's November 20, 2003 - Hi Cheryl, Amiodarone is not actually a heart failure drug - it is to help prevent abnormal heart rhythms. Try starting at www.chfpatients.com/start_here.htm and compare what you read to your own treatment to see if it is proper. Jon.


Robert, November 21, 2003 - Hi, I have been on meds for CHF for 5 months. I find the suffering from these meds beyond my threshold. I can only barely tolerate Lasix and I vomit all day and all night. have high blood pressure and myopathy. When I take an ACE inhibitor or other blood pressure med, I end up in the ER every time for dehydration and nausea. I have severe depression and PTSD from the Vietnam era. Mo matter what doctor I go to, they all use the same tools. If I have turned into a wimp, I do not know. I saw my family die of cancer and they suffered towards the end, but my end is near also and the suffering from the meds is beyond anything I ever imagined. hawkdog86@aol.com


Jon's November 21 reply to Robert's November 21, 2003 - Hi Robert, I am sorry you're having such a rough go of it. There are a lot of alternative drugs you can try but remember that extreme high blood pressure can cause a lot of the same symptoms you attribute to the meds, so it's hard to know for sure what is causing what.
     Try an ARB like Cozaar (losartan) or Diovan (valsartan) instead of an ACE inhibitor. Ask your doctor about using a thiazide diuretic plus Aldactone (spironolactone) instead of Lasix. Ask him for amlodipine - a calcium channel blocker - to further lower your blood pressure so your beta-blocker dose can be reduced and kept low. Low-dose Imdur (a nitrate), especially at bed time, may help your blood pressure as well.
     These are just the options that hit me off the top of my head; I am sure there are plenty of others. Just remember to only change one drug at a time, so you can be certain which drug is really causing which side effects. There are solutions, so don't give up. I don't know your situation so I don't know if you are really end-stage - sometimes it feels like it when with proper treatment changes, we can really feel hugely better! Jon.


Linda's November 21 reply to Tim P's November 19, 2003 - Hi Tim, This is Linda, diagnosed with DCM one day before you, remember? Do not give up!
     Find another cardiologist. No doctor can tell you that you can't get a second opinion. It may jeopardize your relationship with your current doctor but too bad! You can get your own medical records from your doctor and hospitals. They will make it difficult but legally they have to give them to you, along with copies of any tapes or CDs of any procedures. I got mine and handed them personally to a different doctor for a second opinion.
     I am very lucky that my local cardiologist and my cardiologist at the Heart Institute are talking to each other and working together. This is not always the case. Some doctors feel threatened and insulted when you ask for a second opinon. I know this because my husband is a physician. Don't let this dissuade you. Be aggressive!
     You may want to try to get an appointment in a large medical center with a cardiologist that specializes in cardiomyopathy. Beg or borrow the money for the deductible for your meds. Just get them and continue to take them. I can't think of a better investment. You need to find a doctor who will listen to you! Please take care of yourself and keep in touch. lincharity@yahoo.com


Scott B's November 21 reply to Laurie's November 20, 2003 - Hi Laurie, From your post about "vertigo" or "dizziness" it sounds like your diagnosis of CHF is recent. Therefore, I assume that your treatment regimen is recent as well. Drugs like Altace, Coreg and diuretics can all have effects that feel like vertigo. I can assure you this is completely normal. In most cases, this will improve dramatically within 6 months.
     I am approximately 3 years into my meds regimen and I used to feel terrible getting up from bed quickly, or taking my diuretics. Now, my body is quite well adjusted. Every once in awhile I still get a bit of it, but it passes quickly. Most of the symptoms usually have to do with lower blood pressure. I'm sure there are people on this board who can give you more technical information.
     My EF was 22% and it is still in a similar range, but I feel much closer to "normal" than when I was diagnosed. The salt restrictions are part of my life style now (along with strategically fitting diuretics into a busy working day). I even have a 3 week old newborn baby.
     Hopefully, this sounds encouraging for you. I never thought I would feel this good again! Scott Brown. kitchenerguy@rogers.com


Pat W, November 21, 2003 - Hi, I just wanna say that I love this web site. It is so comforting to know that I am not at death's door. It has been very hard for me since this all started after the birth of my son. I had doctors tell me to get my affairs in order when he was just a newborn!
     Well, that was 7 years ago, but the stigma of that has stayed with me. After reading this God-sent web site, I have begun making changes both physically and mentally. I've begun with prayer and diet changes. I now know from you guys that I am not lazy - I am sick. The best info that I got is that there is quality of life with IDCM and CHF. I actually cried while reading a lot of the stories, they moved me so much. All the emotion I have experienced while thinking I was alone was right there in front of me.
     No, that swollen feeling in my belly doesn't mean I am dying; no, that general yukkiness I feel from time to time doesn't mean I am dying. No one in my household has had any kind of heart problems, so they all treat me like I am going to break. That just reinforces those feelings of helplessness that I have. I now have a mission and that is to take control of my health. I'm looking for at least a semblance of the quality of life I used to have. Thanks.
     PS. I have gained 30 lbs since being rediagnosed in February and just after 2 days on the 2000mg sodium intake, I've lost 6 lbs! rollnright@cableone.net


David W's November 21 reply to Laurie's November 20, 2003 - Hi, Dizzy spells can have a lot of causes. If I take lisinopril with Coreg, my blood pressure crashes, causing dizziness. Low potassium can cause dizziness. I had dizzy spells taking lopid, which is a statin cholesterol lowering drug.
     You need to figure out what causes your dizzy spells and correct the cause if you can. After my gastric bypass surgery I took my normal meds and got dizzy and passed out. I stopped lisinopril for a month and cut my Coreg dose down to 25mg. Now my dose for lisinopril is 5mg, a very low dose, but my dizzy spells are gone. Check with your doctor before changing your meds. Good luck. davybwilson@webtv.net


Beth G's November 23 reply to Tony P's November 18, 2003 - Hi, I was diagonsed with DCM in September, 2003. My EF is 30%. I am also experiencing abdominal problems and pain in my left side, especially when sitting upright. I have fullness in my stomach all the time, and not much of an appetite. I saw a gastroenterologist this week, who wanted to do a CT scan and other tests, but I'm not sure about all of this. Have you found out anything yet? I found this web site only 2 days ago. It is truly a Godsend! beegee_187@hotmail.com


Jon's November 23 reply to Beth G's November 23, 2003 - Hi Beth, The feeling of fullness and loss of appetite are described in The Manual. The feeling of fullness may mean a swollen liver, from retained fluid. A CHF specialist will check for this manually in every physical exam. This feeling is also known to occur without edema, but more rarely, from a sudden drop in cardiac output so you should always get "checked out" when it occurs. You may need a lower sodium diet, more diuretics, more aggressive drug therapy with your ACE inhibitor and beta-blocker doses, or something else entirely. Pain should always send you to a doctor unless it is an old friend from a known cause not dangerous. Jon.


James' November 23 reply to Pat W's November 21, 2003 - Hi Pat, It is all too common that we treat the body forget the mind and spirit. As my condition has deteriorated, I have fallen into a pretty deep funk. Every time I go back it seems like I get bad news.When the nurse told me the pacemaker was doing its thing and appeared well, it was the first positive thing I've heard from a doctor in nearly 2 years. In spite of the bad news I keep getting, I am very hopeful about this treatment. My second child, a son this time, was born a few months ago; my daughter 21 months ago. I intend to live every day for them.
     In the end, that's what it's all about: Living life. Even if this ends up being the thing that takes me, no one will stand up at my farewell and say I did not live life. I've no idea when I'm heading for that big pie in the sky but until then, I'll be making the most of every sunrise and sunset. I'm thinking about some whitewater rafting this summer - anybuddy interested? <g> jnj@spamcop.net


Pam, November 23, 2003 - Hi Jon and All, I have a bit of a puzzle for anyone who can help me. I started taking Aldactone (spironolactone) about 6 weeks ago. I'm also taking Imdur and Diovan, but no beta-blockers or ACE inhibitors because of adverse reactions. About 4 weeks into this program, I had a dip in my blood pressures into the target range. My heart rate was in the sixties. The next week, all of it crept back up again into the 180/100s, with heart rates in the 90s.
     I got my doctor's permission to try titrating the spironolactone dose up. The next day my blood pressure was again lowered and my heart rate was under 60. I felt as active and spry as a tortoise. My heart rate has typically been around 120 in the doctor's office, for months. I was a little worried and called the doctor's office to make sure something wierd was not going on with my heart. I mean, I know they want your heart rate to lower, but how much lowering is okay? The doctor was not my regular doctor, and she assured me that my lowered heart rate had nothing to do with any of the medications I was on. Strange. So why did my heart rate suddenly plunge? Any thoughts? Hugs, Pam. spirlhelix@yahoo.com


Pat W, November 24, 2003 - Hi Jon and All, I just wanted to air some thoughts and feelings. I found this web site about a week ago and since then, I have felt such hope knowing that there is quality of life to be had. I have moved up my appointment with my cardiologist to next week from mid-January of 2004, and you should see the list of questions I have for him!
     My family has noticed a change in me as I patiently wait for this newfound hope to totally engross me, take me totally out of this pity-pot and allow me to take charge of this disease. I'm looking for a CHF specialist, which is a challenge, since the nearest metropolis is 3 hours away. I will find one, though.
     We just celebrated my son's 7th birthday yesterday. I used to think that I was dealt such a crummy hand to give birth and at the same time recieve what I thought was a death sentence. I've lived with that dark cloud for the past 7 years, because I was never educated on what to expect from this disease. The cloud is lifting and I don't thank my doctors - I only have you guys to thank. Have a blessed day. rollnright@cableone.net


Peggy's November 24 reply to Darric's November 20, 2003 - Hi Darric, I have never heard of Smoke Away but I have just quit (back in September) with the help of American Lung Association's Freedom From Smoking program. Ironically, the class was offered to me right before I was diagnosed with CHF so I had a real incentive to stop after 27 years.
     This is a support program that prepares you to stop or even just cut down in preparation for stopping. It costs nothing. The American Lung Association is using the tobacco settlement monies for it. Try their web site for hospitals in your area that may be offering this program. It's really going strong where I live because all the hospitals will be going to totally smoke-free campuses next year and a lot of their smoking employees are jumping at the class. I highly recommend this program. I had never been able to stop smoking for a whole day before. If you cannot do it with the smoke away, try this. Just keep trying!
     On another note, has anyone had memory problems? I thought mine was caused by my hysterectomy 3-1/2 years ago, because of lack of hormones. I asked my cardio doc about memory and he says CHF can have something to do with it due to lack of blood flow to the brain. I am really curious to hear if others have this problem. It's getting really bad. I will be having a conversation and stop short in the middle of a sentence unable to recall the word (very simple words) I was going to use. pferro1@bellsouth.net


Barbara, November 25, 2003 - Hi everyone, I was diagnosed with IDCM in December of 2000 with an EF of 10 to 15%. My current meds are Coreg 12.5mg twice daily, Atacand 8mg daily and Aldactone 25mg daily. As of November of 2002 my EF was 45%. Lasix and digoxin were discontinued at that time.
     I recently went on the Atkins' diet and after 2 weeks my creatine was 159 (normal range is 45 to 90). I was told to stop this diet as it is too high in protein and my kidneys are unable to process it. I gained 7 lbs in 10 days and was put back on Lasix to reduce the fluid I gained. My cardiologist told me this diet is not for people with CHF. Has anyone else had a problem with this diet? blmathers@shaw.ca


Jon's November 25 reply to Barbara's November 25, 2003 - Hi Barbara, I hope people respond with experiences, good or bad. Please note that no diet with more than 20% protein is recommended for anyone with weak kidney function.
     The questions are: "What was your creatine immediately before starting the diet?" and "How much protein were you eating daily?" Atkins only recommends 30% protein daily but most people eat a lot more than that due to inadequate fat intake. The diet calls for 60% fat, 30% protein and 10% carbohydrate intake daily. Too much meat is the usual problem, leading to too much protein intake.
     Please also note that I am not saying you did it wrong! I am just pointing out the most common problems encountered by people trying to do the Atkins' eating plan. ;-) My experience can be viewed at www.jonsplace.org/rel/trip.htm. So far, trials have shown Atkins' eating plan to be at least as safe as Weight Watchers, The Zone, Ornish, and the AHA low-fat diet. We'll have to keep an eye on the literature since doctors in general don't know squat about any diet plans - or even about nutrition in general. Jon.


Jacky, November 25, 2003 - Hi, I know this was discussed some time ago but cannot remember the answer. I have tried Search but not come up with anything useful. Is ibuprofen permissable with CHFers for occassional pain relief? Thanks. Jackymwb@earthlink.net


Jon's November 25 reply to Jacky's November 25, 2003 - Hi Jacky, Like all NSAIDS, ibuprofen increases your risk for an acute CHF episode. See www.chfpatients.com/heartbytes.htm#nsaids3. Jon.


Jacky's November 26 reply to Jon's November 25, 2003 - Hi Jon, I should have extended my question! What can I take for headaches, etc? Jackymwb@earthlink.net


Jon's November 26 reply to Jacky's November 26, 2003 - Hi Jacky, Aspirin is one of the NSAIDS least likely to cause serious fluid retention. It also depends on what causes your headaches. If they are mainly muscle tension headaches, a combination of chiropractic, slow stretching exercises, and muscle building in the right areas may eliminate them. If they are migraines, an increase in beta-blocker dose may help.
     If you have sinus congestion, then guafenisen or another over the counter remedy may do the trick, etc. Just be sure to always check with both your heart doctor and your pharmacist before taking over the counter meds.
     If you really need pain relief on a some-of-the-time basis, I suggest asking your doctor about either Ultram or narcotics. Taken for actual pain and not continued for weeks at a time, these are safe and effective drugs for pain. If you have an acute and serious need for anti-inflammatory meds, colchicine may be the best choice - ask your doctor.
     If you need constant pain relief and want to take ibuprofen, I suggest switching to a very low sodium diet of 1000mg sodium or less daily, a fluid restriction of about 2 liters daily, and a talk with your heart doctor about whether to increase your diuretics and potassium while taking the ibuprofen. Jon.


Donna V, November 26, 2003 - Hi and a good Thanksgiving to all. Here's another Coreg question. I started increasing my dose from 25 to 50mg on October 30. My best friend/pharmacist insisted that I take the increases slowly, as did her drug company rep. He said from 25 to 50 was the roughest, and my doc said okay. A week ago I hit the full 50mg dose and have felt like an even bigger slug ever since. I remember feeling this way when I increased to 25mg per day but not as bad, nor for so long. I think I now feel a little better, especially when I can make myself move.
     Did I push too fast in hopes of being less dragged out for the holidays? Also, I've paid close attention to the dry, itchy skin posts but what about dry and ridiculous hair? Women? Mine fell out in clumps but that stopped and it's growing back in, but wildly and it is very dry and just strange! Any thoughts?
     Tis not my hill to die on, just curious if it's just me. Thanks, Donna V. PS. I know I'd be in really terrible shape and and mentally nuts without this site! dmvditty@aol.com


Natalie K's November 26 reply to Barbara's November 25, 2003 - Hi, I have been doing Atkins' for about 45 days. I had labs done this week and my doctor was pleased that all results looked so good, including weight loss, which was measurable but disappointing. She commented that this was consistent with some research that Atkins' works well for diabetics like me.
     My cardioman actually originally suggested the low-carb approach, recommending a Dr. Mercola, who I found even more radical and which I just couldn't do, unfortunately. A doctor friend on Atkins' says he wouldn't hesitate to recommend the diet to his heart patients. So that's 3 docs just that I know. Plus Jon's research sent out this week. Then again, I have no history of kidney problems. You're the only you, Barbara. Alos, as Jon says, it's very hard to do low-sodium. mcnat45@yahoo.com


Barbara M's November 26 reply to Jon's November 25, 2003 - Hi Jon, I don't know what my creatinine was immediately before starting the diet because I only see my cardiologist every 6 months but it has always been normal in the past. You are right though: I was eating more than 30% protein. Two weeks after stopping the diet, creatinine is 141, down some, but still too high so it's back to a higher diuretic dose for the next while. I have an echo scheduled for February of 2004. Thanks for you input. Barb. blmathers@shaw.ca
 
Jon's note: My CHF specialist says, "I like what I see with Atkins'." He and his wife are now on Atkins'. I doubt that Atkins' will work for everyone, though - nothing does!


Jack D's November 26 reply to Barbara's November 25, 2003 - Hello Barbara, Jon noted one of the problems when people go on the Atkins' diet but another one is that they forget about the sodium restriction. It seems that was one of your problems because of the weight gain and need for extra Lasix.
     I had a problem with the protein but I solved that problem with olive oil. Olive oil is good for you, so I cook everything with it and I add it to things. Like when I have salad (made from shredded cabbage), I always use my blue cheese dressing and a couple tablespoons of olive oil. Everything has a little extra oil. Buy some olive oil and don't use it sparingly! maddjak@hotmail.com


George G, November 26, 2003 - Hi, Does anyone know if drinking beer (moderate to heavy) can cause heart muscle weakness? My history is a heart attack in 1996 followed by bypass in 1999. After bypass my EF was 58%. Recently it was found to be 35%. I quit drinking 2 months ago. Also, my doc finally put me on an ACE inhibitor and a beta-blocker. Does anyone know if I can expect my EF to improve? I currently have no heart failure symptoms. Thanks and best wishes to all. Jetmaster727@aol.com


Jon's November 26 reply to George G's November 26, 2003 - Hi George, Yes, it's called alcoholic cardiomyopathy. If your CHF was caused by drinking, you don't drink anymore, and there is no other problem, you have a good shot at improved heart function down the road. Obviously, however, I can only generalize. Stick with the program all the way and your chances improve. Jon.


Margaret D's November 26 reply to Jacky's November 26, 2003 - Hey Jacky, You may take extra strength Tylenol or even arthritis strength Tylenol if your liver function is okay. Ibuprofen or any NSAIDS are contraindicated for CHFers, as Jon said. They can cause problems with your kidneys. Aspirin is contraindicated if you are on Coumadin, and I don't know that you are, as well as any NSAIDS because they affect bleeding times. NSAIDS can also cause GI bleeding, which would mean they shouldn't be taken while on Coumadin. Since I have been on Coreg, interestingly enough, I haven't had a single headache! I would suspect that means they were migraines. mdavis10@tampabay.rr.com


Jon's November 26 reply to Margaret D's November 26, 2003 - Hi, Tylenol was included in the last trial I read on the subject. In CHFers taking 2 grams or more of Tylenol, there was increased risk of triggering an acute CHF episode with it as well. This was not seen in those taking less than 2 grams of Tylenol daily. Also, please read www.chfpatients.com/text/tylenol.txt. Jon.


Betty, November 26, 2003 - Hi, I am not new to this site but have not participated in some time. I have DCM, an EFof 20% for 3 years, and have just started feeling like I am slowly falling back. I am on Ativan as needed, Demadex as needed, Isosorbide 60mg, Lisinopril 40mg, and tenormin 25mg. I think my cardio doc is very good. He is very understanding and always answers my questions, but I am wondering if I should think about a specialist in CHF?
     My doc has a lot of patients with CHF but he seems lost as what more he can do for me. I have an ICD and pacemaker, which has really helped. He wants me to go in and have the third wire put in. He thinks it might help me breathe better. I am tiring to the point I can hardly make it through the day and my breathing is getting more difficult. I am not retaining water and watch my weight every day. I have pressure in my chest and that really worries me.
     I was wondering Jon, if you could give me some advice? I could really use some answers. Is anyone else experiencing the same thing? Thank you, Betty. albetblodgett@yahoo.com


Jon's November 26 reply to Betty's November 26, 2003 - Hi Betty, I always strongly recommend a CHF specialist! As to that third lead, please make sure that you are a proper candidate for it. Your QRS interval must be over 130 ms for you to get benefit from that kind of therapy. See www.chfpatients.com/implants/pacemakers.htm. I would also be checked for developing blockages in my coronary arteries with a stress MUGA (nuclear stress test) or heart cath to make sure this is not what is causing you pressure in your chest. Tenormin is an unusual choice of beta-blocker and I would suggest switching to Coreg if possible. You might also try starting Aldactone (spironolactone), and maybe even an ARB to help the lisinopril do its job. Just suggestions off the top of my head. Jon.


Joy's November 26 reply to Donna V's November 26, 2003 - Hi Donna, In regard to hair loss and strange, different hair, it happened to me too. When I first noticed an increase of hair on the bed linen before we got our dog and on the bathroom floor, I assumed it was my husband's. All my life I have had straight, coarse, thick hair except for the time I received chemo for my breast cancer and then I didn't have any hair at all. When I realized I was losing my hair, I consulted my medication books and found Coreg most likely to be the reason.
     I am now told I have fine hair. I was getting up in the morning with a hair-do that resembled a wizard's hat. Then the flat look with strands sticking out at various angles would take over. Then I looked more like a cousin to the coconut. Small pieces of hair would also curl up at weird angles. Talk about a continous bad hair day - that described me.
     I have been experimenting with various hair cuts and products. Over the last few weeks I think I am reaching somewhat of an accepted look for myself. I am believing right now that my hair loss has reached it max. I too like most of us had an increase in my Coreg. Good luck with the hair. I am feeling great at the present time so it is easier to handle the hair loss, strange look thing. However, I must admit my eyes stray to those blessed with thick hair that seems so perfectly styled. Take care Joy. Pjkachel@aol.com


Pat W R's November 27 reply to Donna V's November 26, 2003 - Hi and happy Thanksgiving to all. Donna, yes, I have had the changing hair thing also. First it dried out so badly that no amount of moisturizer helped. Then it started breaking so badly that I'd have mountains behind me after I combed or brushed. I have very thick, shoulder length hair. My scalp is always itchy. I have some grey, and they grow out like antennae!
     This lasted about 5 months and now my hair is longer and thicker than its been in a long time. I have to moisturize more often to keep the dry itchies away, but the breakage has stopped. I'm one of those girls that prides in her hair, so I was very relieved. I take Coreg also, at 12.5mg twice per day, and it started when the Coreg did. I also have Grave's Disease, which can contribute to hair craziness also. Of course, for the days your hair just won't cooperate, there are some really cool hats out there!
     I really appreciate you guys - have a blessed day. Pat W.R. rollnright@cableone.net


Craig, November 28, 2003 - Hi, I don't understand why so many people so often blame Coreg so often for so many things? Don't heart specialists and people with years of medical learning and knowledge know better than most of us, everyday people? Why would this drug be so raved about and proven to be so right for so many, be the cause of so many problems? Isn't CHF itself the cause of most of our problems in the first place? Why then do we blame our meds so often?
     I'm confused; so many people experiment with their meds. Me, I just do as I am told by the experts because - I can tell you - I know I am not. It has been 2 years nearly since I was actually first correctly diagnosed with idiopathic dilated cardiomyopathy and I feel that for most of that time my meds have helped me immensely.
     I am concerned of late that I seem to be reverting back to how I was before they put me on my meds. Do you think Jon, I may need bigger doses? Is that common? A lot of my pre-hospital symptoms seem to be returning. bayce@optusnet.com.au


Jon's November 28 reply to Craig's November 28, 2003 - Hi Craig, It depends on a lot of factors that I don't know. If you are still following a low-sodium diet, regular exercise plan, and have not developed other health problems that complicate your CHF like diabetes, CAD, TIA or stroke, COPD or whatever, then I suggest getting a physical exam followed by an echo from your CHF specialist as soon as possible. A BNP blood test wouldn't hurt to see how your neurohormonal system is behaving.
     I think that "blind" trust in healthcare workers is what many of us believe foolish. My own former PCP is an internist but he came within days of killing me with consistent wrong diagnoses and incorrect treatments. It was a doctor I had never seen before who correctly diagnosed me with CHF after just one exam.. This is not uncommon. Why would people who have been through such an experience take the word of any doctor at face value?
     Coreg is a great drug for many CHFers. However, it also causes more side effects than any other heart failure med of which I am aware. That is why it is so often blamed first, sometimes wrongly. CHF is usually the root of our misery, but the meds we take for it can spawn a variety of quality-of-life issues as well.
     There is the subset of CHFers who get improved EF on Coreg but no increase in ability to function (that costs many CHFers their Disability!); the subset who see immediate and troubling blood sugar increases; the subset who have trouble maintaining exercise once beginning Coreg, and on and on. Until you suffer such a problem yourself, it's easy to discount the effect on your life. ;-)
     Like I said, sometimes, Coreg is not the real culprit. We are often too quick to make a cause-and-effect connection without any real proof that it is correct. I have done this myself twice over CHF meds so I know how easy it is to do.
     One gripe I do have with Coreg is that many of us will never be able to stop taking it without serious health problems - but - we were not told this before starting it. Why not? Because those experts you trust put us on the drug before this was known. Trust has to be earned and the medical community at large has not earned mine. That's why this web site exists - to give those who want it a chance to educate themselves and monitor their own illness and treatment. Jon.


Pat W R, November 28, 2003 - Hi All, It's me again. I'd like any feedback on my latest dilemma - Coumadin. I was put on this med 3 months into my treatment as a precaution, since I had stopped working. I have since learned that like many drugs, this one can have very adverse side effects. I have been researching natural meds and I think there is some really good stuff out there. I've recently incorporated a few and am now looking into evening primrose oil and flaxseed oil that may work as natural anticoagulants.
     I took a stress test that said I didn't have any blockages and I don't have high blood pressure. My last EF measurement in September was 25%. Is precaution a good enough reason to take this med? I really don't like this med. My INR fluctuates like mad and when they tell me to increase, I cringe. I told my doctor's nurse of my concerns and she quickly shot down the idea of any other alternative. Are there any other requirements for taking this med? I have an appointment with my cardiologist on Wednesday, and would appreciate any input. Thanks for listening. You guys have a blessed day! rollnright@cableone.net


Jon's November 28 reply to Pat W R's November 28, 2003 - Hi Pat, You should only take Coumadin as a "precaution" if you are at higher than usual risk for stroke/blood clots. That includes people with a-fib, history of TIA or stroke, etc,... The first thing my CHF doc did when I switched to his care was take me off 2 drugs, one of which was Coumadin, because I was not at high risk. Take all the drugs you need but don't take drugs unless you need them. I strongly suggest you get a CHF specialist.
     The biggest persistent problem with alternative and herbal products is the lack of regulation. The FDA sent people into regular stores to buy certain supplements right off the shelf - no one knew these people were anything but regular customers. The purchased products were lab tested just to see if they contained what the labels said they contained. Very few contained the stated ingredients in the stated amounts. I believe that study concentrated on extremely popular supplements like glucosamine.
     If unregulated, many manufacturers just won't use proper quality control and ethical behavior - it's "too" expensive in their view. Since no USA supplements are regulated, you have no idea what you are really getting. Worse, you don't know that one batch by a company is really the same as the next batch. This is the only reason I don't endorse any supplements for heart failure.
     Vitamin E and aspirin make the blood "slick" so are fairly good choices if they meet with your doctor's approval and you don't have risk factors. Personally, I take nothing because I have no high risk factors. Why take even a supplement that I don't need?
     Also, why are you asking the nurse instead of your doctor? I assume you are talking about your CHF doc since only he should change or prescribe heart meds - not your general care doctor. Jon.


David L, November 28, 2003 - Hi, I need some help! My dad has been in the hospital 3 out of the last 4 weeks. He has a-fib and CHF with a 25% EF. He has one "good" coronary artery. The attempt at stenting him failed. There was too much calcification. They implanted a pacemaker but it got infected and had to be removed. All in all, we're not happy with his docs.
     We live in suburban New York, west of the Hudson. Columbia, Mount Sinai, New York Hospital, and Beth Israel are all reachable. Can anyone recommend a CHF doctor or center in our area? davidl@bway.net


Curt H, November 29, 2003 - Hi, I want to begin taking taurine and L-Carnitine as Jon has suggested. Where can I find them? Thanks, Curt. curtishammock@juno.com


Jim, November 29, 2003 - Hi, I'm curious if anyone is familiar with a genetic disorder called "Factor Five (V) Leiden." My father was transplanted 10/02/2003 and he was diagnosed with this "genetic mutation" last week. I know that it causes blood clots - he has two over 6 inches long - and that it can be treated with medicine and time. I am curious if anyone else out there has information on it. My best to all. Jim. jiminmanjr@yahoo.com


Catherine L, November 29, 2003 - Hi Jon, I have a question. My EF was just measured via echocardiogram and it measured 55%! My doctor's nurse called me with the news and I commented how tired I am and dizzy if I get up fast. She told me to halve the Toprol-XL from 50mg per day to 25mg per day. I immediately said I'm not that tired and dizzy! I sure don't want to risk any setbacks. She assured me I'd be okay. I am also taking Altace 2.5mg per day. I had the impression that the nurse hadn't discussed this suggested cutback of Toprol XL with my doctor.
     I plan to ask my doctor if it is safe to cut my Toprol-XL dose. My question is, do you think any kind of reduction in a beta-blocker can be risky? I absolutely fear even a reduction of the drug, from what I've read about beta-blockers. I now have no PVCs and my EF is normal. Occasional dizziness and fatigue is a small price to pay in my mind. Please advise and thanks again, Jon. Catherine L. gardengirl47@kc.rr.com


Jon's November 29 reply to Catherine L's November 29, 2003 - Hi Catherine, You are well under target dose for your ACE inhibitor and beta-blocker now. You are only taking 1/4 the target dose of Toprol-XL. Personally, I would base it on my blood pressure in your situation. If your blood pressure is 95/70 or lower, I would consider cutting my ACE inhibitor dose in half to see if it helps.
     I never make any changes in anything based on any nurse's opinion. I don't even let my general care doctor make heart-related decisions with me - only my CHF specialist! Definitely talk to your doc, just as you plan to do.
     If you don't take CoQ10 (and if you can afford it - it is quite expensive) you might consider starting it to see if it improves your energy level. You don't mention your diuretic. Honestly, that is the first thing to cut since unnecessary diuretic use can actually cause fatigue. There should be no risk at all in cutting your diuretic, so if you take one, discuss this with your doc before changing your other meds. Jon.


Willie, November 29, 2003 - Hi, I had a bad reaction to Aldactone (spironolactone). On October 16th my CHF clinic people put me on 12.5mg Aldactone a day. At the time I was taking Lantus Insulin at 40 units a day, humalog insulin on a sliding scale as needed, lopressor at 50mg twice a day, Zocor at 80mg, Lasix at 40mg twice a day, prinivil at 20mg, folic acid at 4mg, potassium at 16mEq, rabeprazole at 20mg, flonase at 1 spray twice a day, and 2 baby aspirins. The aldactone was supposed increase my potassium levels and supposed to better drug for CHF and after my body got used to it, then I was going to start Coreg.
     I went in the hospital on 11/21 for extreme chest pain and I thought I was having another heart attack. I had been feeling sluggish the week before this happened and had told the CHF clinic so. Luckily I didn't have a heart attack and after a cardiac cath it was found that all 5 of my grafts were clear.
     The doctor told me I had excess fluid in my body of which I lost 8-1/2 lbs while in the hopspital. He took me off Aldactone and increased my Lasix to 60mg twice a day. Of course, I'm still to follow my ADA and low-sodium diet that I have been on for the last 18 months. There are many good meds out there and as Jon has said, each of us is a different case who responds differently to meds. Aldactone doesn't work for me but it has for many others.
     It is important to tell your doctors how you feel when you are taking new medicines and also you should be as in charge of your care as possible. I am home now so happy Thanksgiving to everyone and may we all understand that each day is a blessing and live it as best we can. wamcc50@aol.com


Jon's November 29 reply to Willie's November 29, 2003 - Hi Willie, I am glad you're back home! I am very surprised that any doctor would choose to start someone in your situation on Aldactone before getting you on Coreg. This is very, very unusual. You might consider asking exactly why your doctor made that choice. Regardless, I am sure glad to hear that your grafts are still all clear - news doesn't get much better than that. Jon.


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

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