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

Peter S' 6-16 reply to Barb N's 6-11     CHF and diabetes
 
Susan L's 6-16 reply to Jon's 6-15     why no heart transplant?
 
Jon's 6-16 reply to Susan L's 6-16     why no heart transplant
 
Susan D's 6-16 reply to Debbie M's 6-14     coping as a caregiver
 
Roger G's 6-16 reply to Jon's 6-15     ICD and low EF
 
Marty H's 6-16 reply to Jon's 6-15     ICD and low EF
 
Lowell P 6-16     question - target heart rate and exercise
 
Jon's 6-16 reply to Lowell P's 6-16     target heart rate and exercise
 
Jack D's 6-16 reply to MaryAnn H's 6-15     exercise machines
 
Amy W's 6-16 reply to MaryAnn H's 6-15     exercise machines
 
Joy K's 6-18 reply to Marty's 6-16     medical terms
 
Roger H 6-18     health setback - update
 
Susan L's 6-18 reply to Jon's 6-16     saw your "What a trip" page
 
Kate E 6-18     FDA recalls Guidant ICDs
 
Ann M 6-18     FDA recalls Guidant ICDs
 
Jon's 6-18 reply to Ann M's 6-18     FDA recalls Guidant ICDs
 
Susan L's 6-18 reply to Mike H's 6-9     motorcycles and ICDs
 
Vicki James 6-18     new ICD beeping - any ideas?
 
Sandy N's 6-18 reply to Susan D's 6-16     caregivers to CHFers
 
Ann M's 6-18 reply to Lowell P's 6-16     heart rate, meds and exercise
 
Marsha H 6-20     sleep studies, results, question
 
Jim H 6-20     seek CHF doc in Florida
 
Tonya H 6-20     is any financial aid available?
 
LeeAnn D 6-20     EF up and down - questions
 
Hannah K 6-20     questions - right-sided heart failure
 
Jon's 6-20 reply to Hannah K's 6-20     right-sided heart failure & more
 
Scott Brown's 6-21 reply to LeeAnn D's 6-20     maybe more info would help
 
Scott Brown 6-21     supplements and feeling better
 
Bethany T 6-21     husband is in denial - any advice?
 
Stephanie H 6-21     seek info on doc, depression
 
Jackie B 6-21     seek info lymphatic disease
 
Marty C 6-21     supplements and liver function
 
Debbie T 6-21     seek those switched from Coreg to Toprol-XL
 
Melissa A 6-21     seek CHF doc in Lansing, Michigan area
 
Wayne R's 6-22 reply to LeeAnn D's 6-20     EF up and down, how about you, Jon?
 
Jon's 6-22 reply to Wayne R's 6-22     EF up and down & more
 
Shane R 6-22     short of breath at night only - anyone else?
 
Sandy N's 6-22 reply to Jim H's 6-20     CHF docs in Florida
 
Bethany T's 6-22 reply to Jon's 6-21     Mannatech products
 
Jon's 6-22 reply to Bethany T's 6-22     Mannatech products
 
Margaret D's 6-22 reply to Scott Brown's 6-21     I feel better without supplements
 
Debbie T's 6-22 reply to Stephanie H's 6-21     similar situation and location
 
Larry T's 6-22 reply to Vicki James' 6-18     see your doctor immediately about ICD alarm
 
Debbie M 6-22     seek psoriasis experiences
 
Jon 6-23     just checking
 
Karen S' 6-23 reply to Vicki J's 6-18     seek info on Medtronic device replacement cost
 
Roger G's 6-23 reply to Stephanie H's 6-21     coping with diagnosis and changes
 
Mary D's 6-23 reply to Debbie T's 6-21     Toprol-XL experience and more
 
Ben B's 6-23 reply to Wayne R's 6-22     echo testing and EF
 
Kathie P 6-23     questions - cholesterol and statins
 
Patricia P 6-23     Louisiana heat & humidity getting me
 
Roger G's 6-23 reply to Shane R's 6-22     shortness of breath at night
 
Terry P 6-23     ICD experience
 
Hope M 6-23     seek cancer experiences
 
Jon's 6-23 reply to Hope M's 6-23     finding information
 
Giorg 6-23     supplements experience
 
Pat 6-23     carnitine and arrhythmia
 
Jon's 6-23 reply to Pat's 6-23     I'll need to actually see that
 
Cyndi M 6-23     my mom and CHF, thanks
 
Lisa S 6-23     seek PPCM experiences
 
Ann M 6-23     can someone's EF with heart attacks improve?
 
Jon's 6-23 reply to Ann M's 6-23     depends on the individual
 
Wayne R's 6-23 reply to Ben B's 6-23     deterioration experience
 
Michell M 6-23     what should I do about my dad?
 
Richard W 6-25     why see a cardiologist at all?
 
Scott B's 6-25 reply to Stephanie H's 6-21     sadness accompanying illness
 
Scott B's 6-25 reply to Shane R's 6-22     retaining fluid, breathing at night
 
Scott B's 6-25 reply to Kathie P's 6-23     cholesterol lowering drug
 
Scott B's 6-25 reply to Michell M's 6-23     hospital treatment, diuretic
 
Donna H's 6-25 reply to Debbie M's 6-22     psoriasis, beta-blocker question
 
Jon's 6-25 reply to Donna H's 6-25     beta-blocker differences
 
Roger G 6-25     another Guidant notice about ICD recall
 
Tom S 6-25     EF and its relevance
 
Jon's 6-25 reply to Tom S' 6-25     EF and its relevance
 
Tom S' 6-26 reply to Jon's 6-25     thank you for a bigger picture
 
Jon's 6-26 reply to Tom S' 6-26     CHF is really complex
 
Debbie T 6-26     seek advice on disability case
 
Debbie T 6-27     seeking SSD help, still need ideas
 
Donna H's 6-27 reply to Jon's 6-25     ICD recall
 
Evelyn G's 6-27 reply to Debbie T's 6-26     I recommend a lawyer for disability
 
Lawrence M 6-27     having cardioversion Tuesday
 
Patricia H's 6-27 reply to Debbie T's 6-26     my disability experience
 
Roger G's 6-27 reply to Debbie T's 6-26     my disability experience
 
Richard W's 6-27 reply to Debbie T's 6-26     my disability experience
 
Shane R's 6-27 reply to Debbie T's 6-26     my disability experience
 
Roger G's 6-27 reply to Donna H's 6-25     high Lasix doses
 
Pat H 6-27     valve replacement and CHF treatment
 
Jon's 6-27 reply to Pat H's 6-27     valve replacement and CHF treatment
 
Marie H 6-27     where do I start?
 
Roger G 6-28     seek experiences with St. Jude ICDs
 
Chuck F 6-28     approved for disability
 
Roger G's 6-28 reply to Marie H's 6-27     learning about CHF and what to do
 
Molly P 6-29     which test is more accurate?
 
Karen K 6-29     should I have testing more often?
 
John D's 6-29 reply to Roger G's 6-28     St. Jude device experience
 
Patricia M's 6-29 reply to Roger G's 6-28     St. Jude device experience
 
Debbie M 6-29     what about mental confusion?
 
Sandy N 6-30     drug assistance link
 
Sandy N's 6-30 reply to Debbie M's 6-29     mental confusion and heart failure
 
Randy M 6-30     seek advice on EF, exercise, and ICD
 
Jon's 6-30 reply to Randy M's 6-30     advice on EF, exercise, and ICD
 
Roger G's 6-30 reply to Debbie M's 6-29     mental confusion and heart failure
 
Andy P 6-30     has anyone else had these Diovan side effects?
 
Marie H 6-30     does anyone have this sudden sweating problem?
 


Peter S' June 16 reply to Barb N's June 11, 2005 - Hi Barb, Thanks for your recollection of a citation indicating a relationship between CHF and the likelihood of developing diabetes. If you can find it, I think it might be of interest to many of us. In addition to Jon's site, I follow a number of medical web sites. There is a lot of opinion as to the diabetes-leading-to-CHF connection, but not the other way around. PeterSperl@cs.com


Susan L's June 16 reply to Jon's June 15, 2005 - Hi Jon, I have a couple of questions for you. Why did you decide not to take heart tranplant when you were qualified for it with such low EF and Vo2max? What were the other things you consdering at that time? What made you believe your conditions would improve (and you did - I am so happy for you)? susan_lakefield@yahoo.com


Jon's June 16 reply to Susan L's June 16, 2005 - Hi Susan, The strongest reason I declined transplant was the urging of the Holy Spirit to decline, an urging too powerful to misunderstand. However, I had given this much thought previously. In fact, the original reason I went online in 1995 was to research heart transplant.
     The option was pushed my way in 1996, I believe. I was still able to walk short distances, and drive. Why would I want a heart transplant? I wasn't sick enough in my opinion to have a surgery that would guarantee a new set of very serious problems down the road. I had no CAD and transplant would guarantee CAD. A transplant would also guarantee another transplant down the road if I lived that long. Constant testing and meds adjustment come with transplant and I had finally settled into a stable meds regimen. My drug side effects were bad (especially the insomnia) but I could live with them, so trading them in on a more serious set of side effects was unattractive. The cost was enormous compared to CHF therapy and despite excellent health insurance at the time, this was a factor - and so on at great length ran my thoughts.
     It seemed wiser to deal with my current problems if possible instead of exchanging them for different problems - especially since my current problems could get better - if I was lucky. Once that original heart is gone, it's gone forever. Taking 80mg enalapril daily was our next step. That certainly made me tired (no one could read my blood pressure while I took that dose) but it also gave my heart some much needed rest and in a few months I began to slowly improve.
     Today my EF is 55% and my heart for the first time since diagnosis is normal size. Now if I could just get rid of the CHF symptoms that have returned this year! Go figure. Jon.


Susan D's June 16 reply to Debbie M's June 14, 2005 - Hugs to you first, Debbie. I can only tell you what I have had to do, as a caregiver. Get mad. Feelings of depression and hopelessness and frustration are certainly warranted and understandable, but they also rob you of the ability to act.
     The folks suffering from CHF on this board have given me the information and ability to demand answers that make sense to me concerning the patient I care for. If you don't feel you have the necessary support and information from your docs, get your spine straight, get your info in hand, and don't back down until you get what you need. If they won't give it to you, get another doctor. This is not deciding chicken or hamburger for dinner, this is life and death, you need to be assertive and even if uncomfortable, quite aggressive.
     You mention blood test results, but what about an echo? During any of these emergency room visits did they determine a BNP value? Jon and the others here are far more skilled at detailing the testing that should be done, and the treatment that should follow testing results than I am.
     Read these pages carefully and arm yourself with the information you need. Find out the drugs he is on - and perhaps not on - and ask why. I promise you will feel better if you get in the driver's seat and help your husband deal with his disease through education and meaningful conversation with his medical group. The most powerful things I have learned about CHFers is their truly amazing will, get-to-it attitude and ability to teach us all what life is really about. Take the strength they offer through these pages and use it. duetfarm@mindspring.com


Roger G's June 16 reply to Jon's June 15, 2005 - Hi Jon, You make some very good points on the ICD issue. I agree very strongly with you that folks should give life style change and meds a chance to work and see if their EF goes back up, prior to getting an ICD if that is an option for them.
     In my situation, my EF was 25% eight years ago, came back up to 45% for a few years, and then back down to 25%. Now it is at 15%. I also have a very good cardiologist that probably would not recommend the ICD if he thought there were a reasonable chance of my heart improving again. The electrophysiologist is also a person that seems to consider the reality and options of what he is doing. While he was discussing the ICD, he also discussed some situations where this could be applied technically, but reasonable considerations like those you have pointed out contraindicated the ICD.
     You make very good points about the timing, getting a second opinion, and considering the type of physicians you are dealing with. Thanks for ranting. rogergthree@earthlink.net


Marty's June 16 reply to Jon's June 15, 2005 - Hi Jon, Your rant was great and on the money. It took me 4 months of research to decide if the CRT device was the right decision for me. On the 13th of June it was implanted.
     Most message boards I read about CHFers - they do not give enough info on their CHF. There seems to be a main focus on the EF and not stating if the left ventricle size or heart remodeling has responded to medication or if an arrhythmia is present. I wish the medical community would get that term right - arrhythmia means no rhythm - like asymptomatic means no symptoms (my mini-rant).
     In my case my EF was 15 to 20% and after one month it increased to 20 to 25%, but my left ventricle also increased in size. My deciding factor was my last EF measurement dropped to 20% with LV size increasing again. My EKG showed LBBB with wide QRS complex. I did not respond to medications and I could definitely feel the irregular beats and chest tightness.
     When I was diagnosed 6 months ago I did not have any risk factors. A cardiac cath was fine except for confirmation of CHF. So again, I agree all data must be taken into consideration because once a device is in, it's in! One thing you wrote that I question is if someone with only one risk factor of an EF 31% or below rushes to get an ICD and 12 months later theie EF is up to 45% you implied there was no need to rush to get the device. On the other hand, is it because of the device that the EF dramatically improved?
     Also, there is always that "wake-up call" that tends to make people follow a healthier life style. mjhead6505@yahoo.com
 
Jon's note: An ICD does not increase EF - a pacemaker in the proper patient can increase EF, particularly a CRT device - Apples and oranges.


Lowell P, June 16, 2005 - Hi, My pulse or heart rate is usually between 55 to 60. I take 25mg of Coreg two times a day along with a diuretic. When I exercise on a treadmill for example, my heart rate rarely goes above 75. My question is: Am I realizing any benefit for my heart if my heart rate doesn't increase as I've read it should? I believe it is the Coreg that is keeping my heart rate down as I used to have a much higher rate prior to Coreg. Lpepper3m@aol.com


Jon's June 16 reply to Lowell P's June 16, 2005 - Hiya Lowell, See this post (let it load to go straight to the correct post): chfpatients.com/archives/archive10-2003a.htm#Jon10-5replyMargaretD10-5. For a CHF specialist's take on this, see this post: chfpatients.com/archives/archive2-2002b.htm#Jon2-18b. I hope it helps. Jon.


Jack D's June 16 reply to Mary Ann H's June 15, 2005 - Hi, I can't do either of them so I got a reclining stationary bike. As long as there is something interesting on television I can pedal forever. The reclining bike has a nice soft bucket seat so you don't destroy your tailbone or any other important parts. maddjak@hotmail.com


Amy W's June 16 reply to Mary Ann H's June 15, 2005 - Hi MaryAnn, I work out an hour of cardio 5 days a week. I either do the treadmill or the bike. I have tried the elliptical trainer but I can only do 3 minutes on that and in that time not only do my legs hurt, but I break into such a sweat, dripping down my face that I am totally exhausted. I see others on it with no problems. On the treadmill I push myself hard, about 4 mph and I work up to a 4 to 5 incline, no sweat for me on the treadmill or bike but that elliptical kicks my butt. To me, your son is doing good on it. Amy. smeltzy@charter.net


Joy K's June 16 reply to Marty's June 16, 2005 - Hi Marty, I just wanted to clarify some termnology from a "medical community" standpoint. The word arrhythmia is translated from the Greek arythmos. The a means not, and rythmos means rhythm. That would seem to indicate "not rhythm." However, the word can also mean irregularity. In terms of the cardiac cycle this would mean an irregular heart action caused by physiological or pathological disturbances so a person would have some type of arrhythmia because there is an irregularity. A significant loss of a rhythm is called arrhythmic. Another acceptable term to use is dysrhythmia when the rhythm is abnormal, disorderly or disturbed. I hope this clears up some of the words medical workers take for granted but can be so misleading to others. Joy. pjkachel@aol.com


Roger H, June 16, 2005 - Hi everyone, Last weekend I had a little setback. I ended up in the hospital with diverticulosis. The doctor was going to operate after the infection cleared, which is still going to happen within the next few weeks. They put me in the heart unit because of the 2 bypasses I've had along with the CHF. They did an echo and said I had about a 30% EF. The doctors and nurses were amazed at my 300 mg daily sodium intake. I was on an IV from Sunday to Wednesday afternoon, then got to eat some solid food. They were also amazed at my readings of 100 for blood sugar, being a type 2 diabetic. rkharmony@highstream.net


Susan L's June 18 reply to Jon's June 16, 2005 - Hi Jon, Thanks for your reply. Although numbers (EF and VO2max, etc) mean a lot, how you feel is more important. So before asking how you feel right now, I read your What a trip page and learned that you are feeling better by changing your life style and gradually exercising. Your experience with CHF is really a blessing to me. I see the hope. Thanks. susan_lakefield@yahoo.com
 
Jon's note: I also took (and still take) a lot of supplements, had a good CHF specialist, got a dog, and kept my mind busy - all factors in my recovery to date.


Kate E, June 18, 2005 - Hi Jon, I wanted to notify your members of the new FDA Guidant recall. You may recall I had a defective biventricular pacer/ICD unit with a faulty circuit board. Two people have died from defective Guidant ICDs and the FDA just issued a recall. My device quit working at 5 months of age. Guidant knew they had probably defective products on the market and chose to let the docs use them up before shipping units with the error corrected. Kate. francis_yates@lycos.com
 
Jon's note: See www.fda.gov/bbs/topics/NEWS/2005/NEW01185.html.


Ann M, June 18, 2005 - Hi, Guidant has had over 50,000 ICDs recalled. My Guidant device has a model number, not a name. Do you think it's the same or different? There's no information on where you go to check if it's your model. The information just came out today. betsythebeagle20022002@yahoo.com


Jon's June 18 reply to Ann M's June 18, 2005 - Hi Ann and everybody, This has been brewing for a couple of weeks at least. See the FDA site, specifically www.fda.gov/bbs/topics/NEWS/2005/NEW01185.html for more information. That page lists the following Guidant devices as being part of this recall, along with more information:

Roger G sent me a news release specifying the following models involved in this Guidant recall. See www.guidant.com/news/500/web_release/nr_000548.shtml. Here are the ICDs listed in that news release (thanks, Roger!):

I hope it helps, Jon.


Susan L's June 18 reply to Mike H's June 9, 2005 - Hi Mike, I believe that your doctor is against you riding (your motorcycle) with the ICD because if it were to go off you might have an accident which could be attributed to the ICD. The medical field would like to head off any possible negative publicity about their device. Although they could argue that had the rider not had the ICD, he quite possibly could have experienced a sudden death, the medical community would prefer that the ICD's reputation be that of saving lives and not associated with perhaps contributing to injury or death.
     I haven't ridden since I first was diagnosed in July of 2003 as my blood pressure is quite low and my legs are very weak. However, if you are up for riding, I say go for it. By the way, my doctor is urging me to have an ICD but I am not convinced it is necessary for me at this point. If I read the trials correctly there seems to be less evidence of its positive impact on non-ischemic DCM of the female persuasion. susanlocurto@hotmail.com


Vicki James, June 18, 2005 - Hi Jon, I had my first Medtronic ICD implanted 01/5/2004 and it was on the recall list. Vanderbilt Hospital (Dr. Rottman) is replacing all their implants that fall in the range and dates of the questionable ICDs. I had mine replaced on 02/18/2005 and just within the last 5 days it's been beeping. Has anyone else experienced this? I'm going in early to have the ICD checked. It beeps two short bursts once a day. I was thinking it was my husband's watch until today when he wasn't around it beeped again. They told me it would beep when the batteries were low but I've only had it four months.
     I only replaced it because Medtronic didn't charge for the changeout and they also covered up to $2,500 in personal expenses while I was in Nashville. Any comments would be welcome. Thanks, Vicki J. vj6464@aol.com


Sandy N's June 18 reply to Susan D's June 16, 2005 - Hi, This is for Debbie M and for Susan D's reply. What a great attitude, Susan. You are so right about determination to get some answers. I am a CHFer and it does take alot of strength to be a caregiver of any sick person. First, to have great compassion for what the sick are going through. Sometimes we might whine, cry, be depressed and then so up when a test goes to our advantage. The feelings inside (what I call the physical pain) of CHF are so hard to explain to our caregivers. The tiredness and fatigue we have each day are enough to make anyone just lie down and not get up! It's a lot of work to simply walk and heaven forbid we have to get to the top of that staircase but then we have great days and move pretty fast. Our pain is not as simple as a broken leg. It takes a lot out of our spirit and we need you and all the caregivers out there to just try to understand how bad we feel sometimes. We also need you to do something for yourself once in awhile as your reward for helping us as you do. I want to stand up Debbie and applaud you and all the caregivers out there who give up your time and lives for us! Best of love and luck to you. bleuskiiisgrl@yahoo.com


Ann M's June 18 reply to Lowell P's June 16, 2005 - Hi Lowell, Yes, heart medications keep your heart rate and/or blood pressure down during exercise. However, exercise is still a good thing. Improve your exercise time by keeping a subjective "rate of perceived exertion." Exercise will help your heart and vascular system even if you can't evaluate your exercise by an increase in heart rate. mcgrax@cs.com


Marsha H, June 20, 2005 - Hi, I have a question about CHF and sleep apnea. A year ago I had a sleep study done, which gave me an index just very slightly elevated from normal. My lowest sleeping oxygen saturation was 89% with an average waking oxygen saturation at 97%. My doc said that my numbers were too good to qualify me for a CPAP, even though I was waking up gasping for air at home many times a night.
     I recently took my data to a different doctor, who ordered a new study. With the new study, my index is still not alarming but my highest oxygen saturation while awake was 94% and at times it was as low as 84%. She thought perhaps this was a measurement right as I woke from an "event." My lowest sleep oxygen saturation was down to 70% so she ordered a CPAP study, which will occur soon. Does this 19% drop in oxygen saturation in just one year mean that I should be calling my cardio doc right away, or should I wait until I see him late in August? My last echo was in February with an EF of 35 to 40, which was a drop from the 55+ it was 18 months ago. jeffsmimi@earthlink.net
 
Jon's note: Call your cardiologist.


Jim H, June 20, 2005 - Hello, Please e-mail me because I may not be able to find this site again. I am moving to the Bradenton-Sarasota, Florida area. Do any of you know a good CHF doctor in that area? jmhaas43@aol.com


Tonya H, June 20, 2005 - Hello, I wanted to update you guys. I am 23. It has been a year since I was diagnosed with cardiomyopathy and CHF. My EF went from 10% to 50% and I have no damage whatsoever but sadly my father has had 13 heart attacks and quadruple bypass. His heart is not good now. He is undergoing some more surgery. Please pray for him.
     I would also like some advice, I still physically cannot work and my doctor told me not to work yet. I have been denied SSI 3 times. With my EF better now and without a lawyer, I know I won't get it but is there any other financial aid out there for heart patients? I mean, the state of Georgia does not really seem to care. Is there anything? My medication is so costly and I am being sued by all the doctors and hospitals for overdue bills. I do not know what to do anymore. I cannot afford medication or anything. It is getting hard. Any suggestions would be great! Thanks. XPrincesswoo411X@yahoo.com


LeeAnn D, June 20, 2005 - Hi, I was diagnosed with DCM/CHF in 1998. My EF was at 12% for a couple of years and I visited this message board a lot. Over the years I improved to 30%, then it was 55% for about 3 years. This year (I moved from Arizona to Idaho) my EF rather suddenly dropped to 30%. Does it ever go back up after it has been up and then dropped? I have 3 fairly young kids (8, 10 and 12) and want to hang around for awhile.
     Since I was diagnosed, I eat pretty healthy and exercise and adhere to a low sodium diet. I also take CoQ10 and a multi-vitamin. I should probably lose about 10 lbs. What else can I do? My uncle came down with the same thing a year after me and right now he's in the hospital and not expected to make it. It kind of has me worried - although I know God's in control! ddavis1057@aol.com


Hannah K, June 20, 2005 - Hi, I'll make this post as brief as possible. I have moderate aortic and mild tricuspid insufficiency, small vessel disease and a mildly dilated and dysfunctional right ventricle. My EF is 50%. How could I have RV systolic dysfunction if my EF is normal? Are the parameters for diagnosing right-sided heart failure different than left-sided? If I had to guess, I'm class 3. I can no longer run long distance or perform activities long in duration without chest pain or fatigue (I was a long-distance runner).
     Is systolic dysfunction (right or left) the equivalent of heart failure, or does it have to be severe to be diagnosed as heart failure? This is important as I am wondering if I should keep taking my meds, (ACE, diuretic, Advair). Finally, my cardio doesn't understand why the right side of my heart is stressed. We've been watching for signs of stress on the left side due to aortic valve disease. Given my diagnosis, would a right heart cath be indicated?
     Finally, could Advair, Lisinopril or Eplerenone possibly worsen stress on my heart? Thanks. My husband and I have three very young children and this is putting a lot of stress on us. He's in denial. Any advice on how to help him understand what I'm going through? We're praying about it. Blessings and shalom, Hannah. Kachmann@aol.com


Jon's June 20 reply to Hannah K's June 20, 2005 - Hi Hannah, Your ACE inhibitor is a good thing and so is the eplerenone. The Advair I would look into very carefully. One of its components is a steroidal anti-inflammatory, which often worsen symptoms caused by weakened heart function and which also encourages fluid retention.
     I could be mistaken but I believe the other component of Advair stimulates the beta-adrenergic system, which would be a very bad thing in anyone with even the potential for heart failure (beta-blockers reduce beta-adrenergic system effects). It can adversely affect blood pressure and heart rate. The prescribing information warns against prescribing Advair for anyone with coronary insufficiency or other cardiovascular risks. Hasn't your cardiologist mentioned any of this? If you are black, there are also non-heart related mortality risks involved with Advair.
     If it were me, I would want to know the pressures in my heart - all chambers - at this point. That would probably mean a cath and a right-heart cath (I have had both). The right heart is a low pressure system and the left heart is a high pressure system so when one side gets out of whack, it's a safe bet the other side is headed for trouble. The right ventricle is much more sensitive to changes in afterload than the left heart. Afterload means anything the ventricle in question must overcome (work against) to push blood out. The RV does not like increased afterload at all and will go into failure.
     I go into the following at The Manual. Heart failure is a set of symptoms, not a disease. CHF is caused by weakened heart function, which is caused by something else that is usually generically labeled cardiomyopathy. You very much need to find the cause if at all possible since treating the cause may be more effective than treating the symptoms or the syndrome (heart failure). Jon.


Scott Brown's June 21 reply to LeeAnn D's June 20, 2005 - Hi LeeAnn, Your post is missing some valuable information - What are your current meds? Are you taking a diuretic? Did you experience rapid weight gain? How are you feeling overall? Are you short of breath (SOB)?
     Jon, have you heard about any studies about geographic location and heart failure? My initial instinct tells me the actual geography is not directly connected to your lower EF however there could be an indirect connection, such as an increased exertion level with the move. It makes sense to eat healthy and keep your weight reasonable. A relatively small weight loss may help with symptoms but is not likely connected to the root cause of your heart failure (unless the 10lbs is fluid retention).
     Let me know about the questions above, and we may be able to offer more advice. Take care, Scott B. kitchenerguy@rogers.com


Scott Brown, June 21, 2005 - Hi, I read a lot of posts which talk about taking supplements (one of the more popular is CoQ10). I just wanted to say that the only supplement I take is some slow-K (a potassium suppliment) and the occasional multi-vitamin. Although I am still considered class 4 my and EF is 23%, and my vitals have not changed, I feel much better than several years ago when I was initially diagnosed.
     We hear about the people who take supplements and feel better, but not as many people talk about not taking supplements and feeling better. For me, it highlights the need for good studies around these supplements. Take care, Scott B. kitchenerguy@rogers.com


Bethany T, June 21, 2005 - Hi, I have a couple of questions. First, I love the site and use it often, thanks so much, Jon. Second, my husband is the one with CHF and he is pretty much in denial with the disease. He believes if he just pushes himself, he can do it. Right now he can't do anything without getting short of breath. To keep a long story short, it seems to be more thyroid-related (hyper), which may or may not be a good thing.
     I just wonder how to cope with someone in denial of their disease. Are there are any other spouses out there in the same kind of situation? Lastly (okay, a few questions), is anyone familiar with Mannotech? I have a friend that wants to get my husband on this and truly believes in the benefits it can provide. I'm a little hesitant. Anyway, thanks again and God bless you all. Bethany. mammabear7@msn.com
 
Jon's note: Is Mannotech a company or a product?


Stephanie H, June 21, 2005 - Thank you God for Jon. Thank you Jon, for your gift and desire to share it. You have been truly blessed to be able to help so many of us CHFers. Every day I read the posts and learn at least one thing that I didn't know. CHF is such a wacky disease, most of us are shocked when we are diagnosed, scared when we start looking to some of the more traditional heart sites, and don't forget the depression when we realize how much our lives will change because of this disease. Then we find chfpatients.com and we enter a world that is real, real people, real happenings, it's all just so overwhelming at first - there is so much good information here.
     I was diagnosed in August of 2004 with an EF of 20%. On the holter monitor there were some sustained runs of irregular heart rhythms. The trip to the electrophysiologist was even more fun. The group that I went to are renowned in the northern Virginia area and work out of the Inova Heart and Vascular Institute. I was told to be prepared for implantation of an ICD if he could make my heart go haywire. So I am now the proud owner of a Guidant T175 (not on the recall list!). I also at that time had an investigational device implanted called the Optimizer II, a device supposed to improve heart function.
     My concern/problem now is that I've been fairly depressed these past couple of months. There's really nothing new going on in my life. I wake up in the morning feeling like I've been run over by a truck, drag myself out of bed and take a shower. I am SOB and exhausted by the end of that. I get in the car to head to work and start feeling really out of it, and fuzzy. I get to work and I can hardly concentrate on what I'm supposed to be doing, I am forgetful and soooo tired. I make it through the day and drive home. Once I get in the house, I am done. My family have been trying to be understanding. They get pretty tired of eating grilled cheese sandwiches, but they have been real helpful with house work and laundry - these are things that I simply can't do after working all day. Even on the weekends I have to watch not to overdo it because we all know what happens if you do!
     Anyway, my cardiologist says he doesn't think it's the heart failure symptoms that are causing me to be depressed, a factor yes, but not the cause. I went to my primary care doc and she recommended that I see a heart failure specialist at Washington Hospital Center in DC, Dr. Richard Cooke. Does anyone know of him? I was talking with the tech from the Optimizer and he said that from what he knows, Dr. Cooke has a good repuration and is very aggressive with meds. I'm going to see him in July. Anyway, my primary care doc put me on an anti-depressant and told me to take short term disability for three months and rest. I haven't had an echo since I was diagnosed.
     I am sorry for rambling. I don't usually post, just read 'em. Jon, I owe you a donation for June and will get it to you next week. I am heading south to the beach in the morning. howsares@saic.com


Jacky B, June 21, 2005 - Hi Jon, This is very off topic, but a medical question. A friend (she is 71) has been diagnosed with a mild case of lymphoproliferative disease. I cannot seem to find very much info on the Net except connected with transplants, HIV and animals. None of these have any connection to her. She receives no treatment at the moment but more blood tests and sees her doctor in three months. As my research guru, when you have time could you see what info you can find? Thank you, Jacky. jackymwb@earthlink.net
 
Jon's note: I'm not sure how much I can come up with on a short search, which is about all I can manage. I am desperately trying to catch up on the CHF info I didn't read or use while looking for jobs, and while working them.


Marty C, June 21, 2005 - Hello friends, I just had a regular lipid screening done last week that showed my ALT was elevated to 63, with a high threshold of 40. My cardiologist went over the supplements I'm taking (CoQ10, taurine, L-Carnitine, L-Arginine, Creatine Monohydrate, Garlic, and Omega-3 fish oil) and here is his response: "Since we are dealing with a mystery to some degree regarding the ALT, I would suggest holding the supplements for a while." The fish oil is the only one with what I consider to be convincing research supporting its use. The others could possibly contribute to the ALT issue." Please share your thoughts. Thanks, Marty. padre45@aol.com
 
Jon's note: I suggest stopping supplements (or meds) one at a time. How else will you know which is the problem, if any? As your cardiologist knows, CHF meds can also raise ALT! Meds that can do this include hydralazine, captopril (ACE inhibitors), lovastatin (statin drugs), niacin, procainamide, amiodarone (Cordarone), and some antibiotics.


Debbie T, June 21, 2005 - Hi, I've been switched from Coreg to Toprol-XL for a month and am now at 50mg twice a day, which I've taken now for a week. I feel more like myself than I have in over a year. I rarely have a dizzy problem, which I had big time before. I am aching all over but who knows what that's from, maybe doing something for a change? <g> I dunno. I am just checking up on you Jon and anyone else taking Toprol-XL to see how everyone is doing. Take care, Debbie. debs4246@yahoo.com
 
Jon's note: I am just starting the switch so don't really know anything yet.


Melissa A, June 21, 2005 - Hi everyone, We need some help identifying a doctor in the Lansing, Michigan area well-versed in CHF. Our family is concerned about my mother's sudden change of health and the inability of her doctor to recommend any relief or explanation. Perhaps we need to move her out of her comfort zone doctor to one specializing in this disease. Recommendations? Thank you! Mmmmas@aol.com


Wayne R's June 22 reply to LeeAnn D's June 20, 2005 - Hi LeeAnn, I have the same question. My EF rose to 65% and I was hoping that it would at least stay in the normal range. But it has dropped to around 45% over the last year, despite continuing all of the same meds, salt restrictions, losing weight, using a CPAP and exercising 4 to 5 days a week. I could not be more compliant, which makes the drop more than a little worrisome. Jon, what was your experience? Did you go up and down too? Or just up slowly? Thanks, Wayne. whreos@earthlink.net


Jon's June 22 reply to Wayne R's June 22, 2005 - Hi Wayne and everyone, I'm no happier with my "improvement" experience than those posting recently. My EF went up and down but did finally make it to a solid 60%. My last echo - done after class 2 CHF symptoms returned - showed 55% but with normal heart size for the first time. That's a small drop so I'll have to wait and see whether it's a trend or not. All my blood work came back totally normal, including BNP, BMP, CBC, and thyroid testing.
     Healthy test results aside, my CHF symptoms have returned, including insomnia, fatigue, shortness of breath, lightheadedness, increased foot pain, mental dullness, and weight gain. The mental dullness and lightheadedness cost me my last job. Like you, I am tremendously strict with life-style and meds compliance. It's hard to believe this is not heart-failure-related, although it's possible. I am switching from Coreg to Toprol-XL to see if it helps.
     I am hearing more and more from people who improved with beta-blocker use but who are now slipping back. One must wonder if our bodies side-step Coreg's beneficial effects even better than they do with ACE inhibitors. Over time, it is a fact that CHFers on Coreg have rising blood pressure despite target dose. So maybe there is a subset of patients who won't do as well long-term on beta-blocker therapy. After all, we are guinea pigs when it comes to long-term Coreg use since there are no really long-term trials studying this. Let's hope for the best.
     I will add that my own CHF doc isn't as concerned as I think he should be. Normal test results or not, when a CHFer starts sliding into a higher (worse) heart class, it's time to step outside the box and start applying new thinking. If the beta-blocker switch doesn't help, I am considering adding Inspra to my meds. If neither helps, I am getting a second opinion and have a couple of doctors picked out for it already. Ya gotta look out for your own care with CHF! Jon.


Shane R, June 22, 2005 - Hello, I've had CHF for 8 years, so I am used to the roller-coaster ride but lately the shortness of breath at night has gotten noticably worse, and I was just wondering. My doctor doesn't seem real concerned, but I am. Is the worsening shortness of breath just part of the ride?Especially since I know I'm steadily losing ground heart-wise. Fluid build-up is not the problem or at least there's none of the usual warning signs, and I haven't had any increased shortness of breath during the day, just at night. I am unsuccessfully trying not to lose any sleep over it, but am wondering what some other's reactions or experiences are. strikeapose71@yahoo.com


Sandy N's June 22 reply to Jim H's June 20, 2005 - Hi Jim, I live in Largo/Clearwater and have a great CHF doc at the Heart and Vascular Instiute of Florida. They also have an office in Sarasota/Brandon. Try Heart & Vascular Center of Florida, (941) 359-9233 at 2401 University Pkwy, Sarasota, FL. 34243. You can find one here. Good luck to you. bleuskiiisgrl@yahoo.com


Bethany T's June 22 reply to Jon's June 21, 2005 - Hi, It is both, one of those pyramid type home business deals. Their web site is mannapages.com. Thanks, Bethany. mammabear7@msn.com


Jon's June 22 reply to Bethany T's June 22, 2005 - Hi Bethany, I went to their site and downloaded their pdf product information sheets, which contain the product ingredients. I see nothing there that would help someone with heart failure in any special way. In fact, I was surprised at how few ingredients were used and how "generic" they were. I am not speaking to "glyconutrients" in general, only to the specific products they seem to offer online. Jon.


Margaret D's June 22 reply to Scott Brown's June 21, 2005 - Hi Scott, I am one of those who feel much better but have not taken supplements! My EF has gradually risen from 15% to 55% in 3 years. My left ventricle is still quite large, though. Last year I was able to cut my Coreg down to 12.5mg per day. I immediately felt so much stronger! I used to feel so weak all the time. I eat a very balanced diet and have never felt the need for so much as a vitamin. I do know that I may be in the minority! mdavis10@tampabay.rr.com


Debbie T's June 22 reply to Stephanie H's June 21, 2005 - Hi Stephanie, I know exactly what you are talking about and I finally had to sell my insurance business and stop working all together. Stress was the worst part on me and made a huge difference in how I was doing and am doing. I have to admit that having only half the income has affected us but I just couldn't handle things before, and the worse part of the feeling of losing my mind - forgetting things, worried what my actions would have, what affect on others, would I fall asleep on the way home - and that was only working part time.
     Not having to go Route 66 anymore has meant a lot too. I require the rest and I want to be around to see my grandchildren grow up. I also live in northern Virginia and would be very interested in how things are going and what meds you are on. Arrhythmia Associates is my pacemaker doc and I'd be very interested if you should find a CHF specialist in our area. Debbie. debs4246@yahoo.com


Larry T's June 22 reply to Vicki James' June 18, 2005 - Hi Vicki, Your ICD is programmed to give off two audible alarms depending on what sets it off. It will continue to sound until you have it reset. You need to call your doctor immediately. Larry. carolthornton@comcast.net


Debbie M, June 22, 2005 - Hello, I have a question that is odd on CHF. Before my husband had his aortic aneruysm surgery two years ago, he had really, really bad psoriasis. His surgeon asked how long he had it and we said for a very long time. He said there have been some studies on psoriasis being related to heart trouble. Then for a long time after surgery it cleared up. We were both suprised. However, lately we've noticed it's coming back.
     Has anyone had any experience with this or know anything about this? Also, this message board (The Beat Goes On) is so wonderful! I've been on it a week now and have been in touch with really, really, wonderful people here. I even recommended it to my neighbor last night, whose spouse is having heart trouble. This is a wonderful site and has been a great inspiration to me. dmcconnell@unioncentral.com


Jon, June 23, 2005 - Hi everybody, If you have problems using our online donation system, please let me know. I only mention this because it's been so long since I received a donation this way that I donated a dollar to myself to see if it even worked (it did for me using my credit card). Thanks, Jon.


Karen S' June 23 reply to Vicki S' June 18, 2005 - Hi Vicki, How did you get your out-of-pocket expenses paid? My husband had his Medtronic ICD replaced Monday and no one has said anything to us about this. Thanks, Karen. gstilley@hotmail.com


Roger G's June 23 reply to Stephanie H's June 21, 2005 - Hi Stephanie, I read your post and hope to be able to help a little. I see you have so many things happening and all so fast. You, like most of us here, are adjusting to a new life style, medications and all the things that happen to your body because of them: Implanted devices, trips to the doctor, family, and on and on. Hang in there.
     A little depression may be quite a human response to all of this sudden change. I know from my eight years of this that you can! You are still in your first 10 months of this. It tends to settle down once you get in the new routines for awhile. Revel in them! There is nothing wrong with a morning nap followed by an afternoon nap! Actually, I think I am becoming a cat. ;-) Teach your family to cook low sodium meals. Grow an herb garden and try using the herbs. Make a "happy book." Fill it with photos and writings of the things that made you happy today. Change causes stress and perhaps depression too. I think most of us have had a little of that along the way, but you can do it. Revel in the changes.
     You mentioned that you have not had an echo since you were diagnosed - don't be shy with your cardiologist. Ask why they choose to do echos when they do. My first series were every three months for the first two years, then down to every six months. Perhaps recommendations have changed but with your devices and only being in the first year you may want to ask. rogergthree@earthlink.net


Mary D's June 23 reply to Debbie T's June 21, 2005 - Hi, I am on 150mg Toprol-XL. I started out on 50mg and my doc gradually increased me up to 150mg once a day. I did go to 200 but I was too tired and doc said the benefits from 150 to 200 were small versus the quality of life at 150mg. I am also on Altace, Aldactone (spironolactone), Lasix, digoxin (Lanoxin), and Zoloft. I am weaning myself off the Zoloft to see how I feel without it. At $25 a month, I can save the cash if I don't really need it. My hubby said he would let me know if my attitude changes too much. <lol>
     Anyway, I find the Toprol-XL has helped a lot. I am still on disability and will be for the rest of my life but I can do some housework, a little each day. I grocery shop, take care of my dogs, etc. Sometimes I even forget that I'm sick. I hope this helps. Mary. marydrennen@yahoo.com


Ben B's June 23 reply to Wayne R's June 22, 2005 - Hi Wayne, How was your 45% EF measured? I would not base any opinion or anything on the results of one echo test. My personal feeling is that this is one of the most inaccurate tests around. I think it is probably only beneficial for ballpark readings and trending. I know from reading this site that right off the top it has a +/- 8% tolerance and I personally believe that it is worse, especially when you take into account different machines, different techs, and different conditions. Add to that the fact that EF probably varies as it is.
     So many people seem to talk themselves into feeling sicker based on some number they see on a report. People go in feeling like a million bucks and expecting a 65%, get a 45% and think they're going to die. If a person didn't notice feeling worse before the echo, why trust some machine that reads sound waves over your own brain and organs? If you feel sicker despite good numbers, I would believe that more than suddenly feeling bad because you got a bad reading on an echo - especially one echo. bdbrinkman@juno.com


Kathie P, June 23, 2005 - Hello all, I'm new to this incredibly wonderful site, as far as posting. Thank you Jon and may God continue to bless you. I was diagnosed one year ago with DCM, CHF, EF below 20%, and several leaky valves. I'm taking Coreg now at 18.5mg twice a day, Altace at 10mg, spironolactone at 12.5mg, and furosemide at 20mg (I also follow the Nutrient Stew). I have refused Coumadin.
     I have never had a cholesterol problem until now. Now I am at 257 total with HDL at 62, LDL at 186, and triglycerides at 59 since December and again in May. My cardiologist wants me to start Lipitor at 10mg but my heart is just not in it! Am I nuts for thinking that perhaps my body (heart) needs my cholesterol to be high to help my heart? Any studies on that?
     I am adamantly against taking statins. I tried Atkins from December to May and was shocked it did not help. My doc is not pushing me. I have been richly blessed to be feeling incredibly good since I left the hospital last year, with no recurring symptoms like shortness of breath. Any and all advice from all you wonderful people would be greatly appreciated. Thank you all. Kathie. mountainmama51@juno.com


Patricia P, June 23, 2005 - Hi all, I live in southern Louisiana and even though I don't work during the summer, I know that I feel much worse during the summer months. The heat is hard for me, even though I try to stay in the shade. I spend a lot of the summer at the ball parks and when I get home I am usually exhausted, sometimes it takes me a day or two to recover. I feel much better in the winter. Patricia P. pgp24815@aol.com


Roger G's June 23 reply to Shane R's June 22, 2005 - Hi Shane, I get the same thing with the shortness of breath at night from time to time. For me it lasts a month or two then passes for a while, then comes back again. It seems to be mostly at night when there are fewer distractions like the family or tending to other things. I have been able to pin the shortness of breath to Coreg, I think. I take 25mg BID. If I break the evening dose in half and take the first half a little early and the second half a little late, it seems to help. I try to separate the two evening partial doses by about two or three hours. Sometimes when I am really sensitive to the Coreg I may forget to take the second evening half dose. When the shortness of breath or stomach cramps start to pass, I go back to normal 25mg BID. rogergthree@earthlink.net


Terry P, June 23, 2005 - Hi all, I can't say ICDs are for everyone, but I had one 9 months ago and when I was walking one day in November I suddenly couldn't move and the ICD went off and gave me a life saving jolt. When the doctors checked the ICD, it showed that my heart rate was 220 when it fired. I only think both sides of the ICD story should be heard as I have never had a complaint. terry_puls@shaw.ca


Hope M, June 23, 2005 - Hello everyone, It's been a long time since I've visited this site. I'm 52, have had an artificial mitral valve for 11 years. My EF is 30% and my left ventricle is "massively enlarged" (that's the wording on the echo report) at 8.2 cm. Of course I am on heart meds. In March I came down with a fever of unknown origin. After much testing, it was determined that I had a metastasized cancer to my liver, but they can't find the primary cancer site. They have a term for that, too - Cancer of Unknown Primary (CUP).
     Anyway, my fever finally went away, my appetite returned, and my liver enzyme tests have gone back to normal. I'm hoping I've had a miraculous cure or the initial diagnosis was wrong. I'll get a second opinion from a gastrointestinal oncologist in 2 weeks. I'm very reluctant to have chemotherapy when my heart isn't up to par.
     I've been searching for a web site where I can discuss cancer treatments and heart issues, but haven't been able to find one. Can anyone recommend a site? Or perhaps people here have had this experience? Thank you. hlmcneil@cox.net


Jon's June 23 reply to Hope M's June 23, 2005 - Hi Hope, Don't forget that you can use the Me Too pages to look for people in your situation. Use the "find" feature of your web browser to locate all instances of the word "cancer" listed on each page. You can also use this on pages found by searching The Archives. In Internet Explorer, this is on the top menu under Edit, Find (on this page). In Firefox, it is on the top menu under Edit, Find in this page. I hope it helps. Jon.


Giorg, June 23, 2005 - Hello all, I would like to tell my personal experience about supplements. I made the best improvements going from an EF of 15% to an EF of 45% without using supplements, thanks to ACE inhibitor, beta-blocker, diuretics, exercise, and low fluid diet (but not so strict about salt).
     Then I started feeling weaker, my EF dropped again to 29%, and it looked like all of the above was not enough anymore. I began taking L-Carnitine and L-Arginine. I am not sure about carnitine, but I am almost sure L-Arginine gave me extra energy. My suggestion is that if you already feel good and are stable maybe there is no need of supplements, but if your exams tend to be worse and you feel weaker, then supplements are at least worth a try since they can improve life's quality without side ffects (except on the wallet!). Bye. giorgclunei@hotmail.com


Pat, June 23, 2005 - Hi everyone, I have fought through 9 years of cardiomyopathy and have been fortunate to still be working full time. However, my cardiologist informed me earlier in the spring that echo and treadmill results indicate a signficant decrease in my heart function. I was told by my pharmicist that Carnitor as a prescription carries arrhythmic potential. I have a pacer/ICD and have experienced maybe 8 discharges over the years. I have currently added arginine and taurine to my stew but am wary of carnitine's side effects. I had a pharmacist read printout on Carnitine so I know a body of evidence exists over arrhythmia concerns. Jon, your thoughts? grousepoint@yahoo.com


Jon's June 23 reply to Pat's June 23, 2005 - Hi Pat, According to Medline (PubMed), L-carnitine is anti-arrhythmic and I quickly found over half a dozen studies documenting its anti-arrhythmic effects. The same search turned up zero reports of any potential arrhythmic effect.
     I also read the complete prescribing insert, which I have on hand in hard-copy. It took awhile but I read the whole thing. Contraindications: None. Warnings: None. The Precautions section has zero on cardiovascular possibilities. In people with a carnitine deficiency, Carnitor actually cures arrhythmias.
     I simply don't know where your pharmacist is getting his information but I'd like to see it because it is new to me - and to my CHF specialist. Jon.


Cyndi M, June 23, 2005 - Hi all, It has been several years since I posted a message to this site. I began posting questions in 1997 or 1998 when my mother was first diagnosed with CHF. I just wanted to let those that have survived with CHF for an extended period of time that my mother Doris passed away June 14 in Melbourne, Florida.
     She was a fighter and fought a courageous 7-year battle with CHF. Her EF was between 23 and 25% when diagnosed and she continued to fight up until April of 2005. Her kidneys began their decline and during Memorial Day weekend shut down. She began dialysis and the family thought maybe she would be able to continue on but Mom saw this as a hurdle she didn't want to undertake and she told my father that she was really tired of all this and basically gave up her fight.
     Even though it is the most painful thing I have experienced in my life, I have gained more respect for Mom to finally say she finally had enough. I know in my heart that she is in a much better place and my closing is, God bless you Jon for having this site and answering my questions during the beginning when I constantly submitted questions. Cyndi F. cmiller@access.k12.wv.us


Lisa S, June 23, 2005 - Hello, I delivered a healthy baby girl on May 17th. On the 21st I was readmitted with CHF. My EF is 19%. I had a stress test yesterday and am awaiting the results. I had high blood pressure before being pregnant but was treated with medication and my blood pressure was good through pregnancy until the last few days before being induced early with pressures of 160/110. I am 34 years old.
     I would like to know if anyone else had a similar situation after childbirth or has heard of someone. Thanks. shfrdkr3@msn.com
 
Jon's note: Have you searched the Me Too pages for others? See chfpatients.com/biosgate2.htm.


Ann M, June 23, 2005 - Hi, Can heart damage be reversed? My 2 previous heart attacks damaged heart muscle - the first one killed about 1/3 of the back of my heart in 1999 and the second one went after 1/4 of the front of my heart in 2003. My EF is 27%. How could that improve with damaged heart muscle? The back of my heart is still 100% dead for the 1/3 of it after 5 years. So when I read on this site how EF has improved, is it from heart damage type of problems or other types? betsythebeagle20022002@yahoo.com


Jon's June 23 reply to Ann M's June 23, 2005 - Hi Ann, This depends entirely on the individual. Both non-ischemic and ischemic CHFers can see EF improvement. Did you have any reduced blood flow to the heart restored, as in bypass surgery or angioplasty? Did you immediately start taking a beta-blocker after either of your heart attacks? Has your cardiologist talked to you about the difference between "hibernating" and dead heart muscle cells? These are all important factors for someone who has had a heart attack.
     Doctor often toss around the "1/3 of your heart" type comment but this is highly misleading in many cases. In my opinion, they are usually trying to get patients to accept a state that may be improved with aggressive care. EF improvement is not a sure thing by any means, but it is possible. Jon.


Wayne R's June 23 reply to Ben B's June 23, 2005 - Hi Ben, My EF had decreased from 65% to 50% with each of my last 3 echos and I was feeling steadily worse, with dizziness, lack of concentration, exercise more difficult, less energy, SOB, I could go on. My doctor suggested a cath, which yielded the 45% EF and a re-enlarged heart. That was on 5/23, my birthday. Oh well, in the words of Mick Jagger, "You can't always get what you want."
     Like Jon, I'm beginning to wonder if the long-term benefits of Coreg are as meaningful as the short-term benefits. I'll be eager to hear of his experience with Toprol-XL. I've considered asking to add an ACE Inhibitor to my ARB, but I'm waiting until my next echo in August to decide. The criteria seem to suggest that one would have to have an EF lower than mine to do so, but at some point I have to take action. Thanks for the words of advice, and good luck. whreos@earthlink.net


Michell M, June 23, 2005 - Hello all, I care for my father, who has severe CHF. His heart function is approximately 10% or less. He has gained massive fluid in his abdomen and I am very concerned. Is this an extension of the CHF or a possible different problem? He refuses to go to the hospital for testing but I am almost to the point of just taking him anyway. Can someone help me please? mmckissack@redriverradio.com
 
Jon's note: Take him. Now. Abdominal edema is a classic severe heart failure symptom.


Richard W, June 25, 2005 - I have a question: Why is it necessary for CHF patients to visit a cardiologist at all? CHF is incurable. Treatable, yes. I was diagnosed with CHF five years ago following a diagnosis of irregular heart rhythm. The heart rhythm was corrected through surgery. The irregular heart rhythm however, caused my CHF. I was put on an ACE inhibitor, beta-blocker and for two years, digoxin. I was told by the cardiologist to modify my life style, exercise, watch my sodium intake and take naps when tired. He returned me to my internist in whose care I've been. I report regularly for blood tests (every ninety days).
     Has my condition worsened? Yes it has. I'm fatigued. My heart sometimes pounds at night, to the extent that it awakens me. I awaken exhausted. But return to a cardiologist or more echo tests? Why? It is what it is. I visit this site regularly as well as others including the American Heart Association's sites. I'm doing what I should be doing. CClmbs3@AOL.COM
 
Jon's note: Honestly, maybe if you'd been in the care of a decent heart failure specialist all these years, your condition would NOT have worsened. The literature is inordinately clear (so clear I have a whole web page about it) - internists generally do a poor job of managing CHFers.


Scott B's June 25 reply to Stephanie H's June 21, 2005 - Hi Stephanie, Many people around me think I am an exceptionally positive person by nature. Regardless of the fact I have this terrible genetic disorder (dilated cardiomyopathy), I have a smile for everyone every day. However, I do feel well compensated most of the day.
     When I was first diagnosed, I was feeling terrible. The meds took about 1-1/2 years before I really seemed to get used to them. I would get so tired I could barely keep my eyes open. For the first time in my life I started feeling depressed, really down. There aren't many people who learn they have an uncertain future, a life threatening illness and the inability to do the things they once did - and not feel sad about the whole situation. When you are feeling sick, it plays on your mind. I am not sure there is any way around it.
     If you can exercise, I would try to do it. As your body becomes more efficient, you will get less tired. The longer you take your meds, the more you will return to feeling like "normal." Some of the meds we take are very powerful, and can initially give us symptoms which are worse than the CHF symptoms we were not even noticing. I hope you start to physically feel better. Best wishes, Scott Brown. scott.brown@sunlife.ca


Scott B's June 25 reply to Shane R's June 22, 2005 - Hi Shane, Perhaps Jon has some other comments on this. If you are experiencing SOB, you are almost definitely retaining fluid, whether you are noticing other symptoms like bloating or visible swelling. The reason you notice the SOB at night is because you are lying flat, which is the most difficult way to breathe for a CHFer. If you start propping your head up in bed with pillows, you should notice it is easier to breathe as you sit up further.
     Take your diuretic 6 hours before bed. You should notice your breathing is normal or improved that night. If so, it proves you are retaining water. You may need more diuretic. If your weight is not higher than normal, it may mean you have lost a few pounds of fat and your new base weight may be lower than the one you have been using. Let me know if this is not the issue. I have more ideas for you. Thanks, Scott B. scott.brown@sunlife.ca


Scott B's June 25 reply to Kathie P's June 23, 2005 - Hi Kathie, My advice is to take the Lipitor. It seems to be a pretty good drug. I have not heard much negative about it. It is going to help lower your elevated levels of cholesterol, hopefully into a normal range. It sounds like a good idea for your situation. Good luck, Scott B. scott.brown@sunlife.ca


Scott B's June 25 reply to Michell M's June 23, 2005 - Hi Michell, You need to explain that the hospital will hook him up to an IV with more powerful duiretic (under supervision) than he would be able to take orally. It's not a painful process and he will feel much better when they "dry him out." He likely has 10 lbs of fluid (or more) in places where he doesn't want it. Good luck. Does he currently take a duiretic? Has he been taking it? Has he been taking enough? Take care, Scott Brown.
     PS. Jon, thanks for the reminder on donations. That link is really easy. I wish it was a tax deduction in Canada as well. Still, I will point my family and co-workers to this site I get so much use from. I learn a lot, and I get to help other people as well. scott.brown@sunlife.ca


Donna H's June 25 reply to Debbie M's June 22, 2005 - Hi, My husband has had a bad rash that has gotten much worse since his heart failure started. His doctors treat it by prescribing clotrimazole cream. It doesn't make the rash go away but it does seem to help a little. None of the doctors has ever diagnosed it as psoriasis or anything else but I have always wondered if there was a connection.
     Jon, can you send me someplace that will explain the benefits of Toprol-XL over Coreg? They have reduced my husband's Coreg to 12.5mg from a high of 50mg twice per day. He is not in failure right now but it is a day-to-day thing. He is up to 320mg Lasix per day and this alarms me but doesn't seem to concern the doctors as much as it does me. Of course, budget cuts at the VA and a lower income at home have meant that we only see a doctor if he starts getting ill and we go to the emergency room. He saw the transplant specialist in April and he said that unless he gets sick, we don't need to go back for a year.
     He is having some problems with fuzzy thinking and forgetting things. It is frustrating for him and we wonder if it is the CHF or the meds or a combination. herdrich@grm.net


Jon's June 25 reply to Donna H's June 25, 2005 - Hi Donna, What is an advantage to one person is a disadvantage to another person, so I'll note some differences (and similarities) here and you can decide which are good in your husband's case and which aren't.

I hope it helps. What it boils down to is that Coreg is a very complex drug and all its actions are not understood. Toprol-XL is less complex and has fewer actions. That may be good in some people, and not so good for others. Please also see chfpatients.com/beta_overview.htm for more beta-blocker information in general. Not all beta-blockers are created equal, that's for certain. Bucindolol should not be taken by CHFers. Jon.


Roger G, June 25, 2005 - Hi everyone, Here is a link to another Guidant notice about more ICD failures: www.guidant.com/news/500/web_release/nr_000554.shtml. rogergthree@earthlink.net


Tom S, June 25, 2005 - Hi everybody, It seems to me folks throw EF (Ejection Fraction (chfpatients.com/faq/ef.htm) numbers around this forum with no apparent rhyme, reason or understanding of their significance. It has always been my belief that when you quantify any function with a numerical value there are numerical constraints. I was under the impression that a normal EF was in the 55% range, and that the number is based on the percentage of oxygenated blood of blood in the left ventricle that is pumped out in one beat.
     According to the EF page, "If your heart pumps out 55% or more of the blood in your left ventricle on each beat, you have good heart function." Now I am seeing numbers like 65% and even 75% being thrown around in this forum without challenge and I am confused. My EF has gone from a high in the 30s to a low of "immeasurable" (by direct measurement via heart cath). Right now I haven't got a clue where it is at and I am on supplemental oxygen.
}     The reason I mention this is because Jon often writes the EF is not as important as how the individual feels. When my EF was in the teens I just got tired and out of breath faster and knew something wasn't quite right. When it plummeted into the single digit numbers I definitely felt fatigued and started having other symptoms such as water on the lungs and abdominal edema.
     Now I am reading an entry in this forum that seems all over the ballpark with EF numbers I would be running a marathon if I had them, so I guess I am at a loss to understand why anyone with a close to normal EF would be all that concerned about CHF? bigheart@muchomail.com


Jon's June 25 reply to Tom S's June 25, 2005 - Hi Tom, I can only speak to generalities. Many CHFers have felt better with a reduced EF than they did later with an improved EF. This is because heart failure isn't just a reduction in heart output - it is a body-wide syndrome that affects so many bodily systems it ain't funny. Not all those systems go back to normal when heart function goes back to normal. Toss in med side effects and EF becomes just one part of a very complex puzzle called CHF.
     My own EF is in fact 55% but I have slid from functional heart class one to class 2. I am still getting worse symptom-wise while my EF remains normal. This indicates to me that heart failure can return without loss of heart output, and also enforces the concept that EF is not by any means the end-all of heart failure test results.
     Everyone should note that too-high EF is just as bad - or worse - than too-low EF. If your LVEF rises to 75% or more, you may well be headed for serious troubles due to unmanageable physical pressures in the heart muscle and its blood vessels. Higher is better, but only to a point with EF. Jon.


Tom S' June 26 reply to Jon's June 25, 2005 - Hi Jon, You deserve a big thank you. For the first time in 10 years you have clarified something that I have never quite understood. I hope this helps others to understand the significanc of the "entire package" that involves many elements, not just some number. bigheart@muchomail.com


Jon's June 26 reply to Tom S's June 26, 2005 - Hi Tom, There are some other posts that go into slightly more detail, if you're interested. See:

chfpatients.com/archives/archive3-2005b.htm#Jon3-16replyLowellP3-16b
chfpatients.com/archives/archive10-2003a.htm#Jon10-2replyMaria10-2
chfpatients.com/archives/archive4-2004b.htm#Jon4-20replyLouiseD4-20.

I just read a long study on all the reasons heart failure makes it tough for us to be physically active. The number of things that CHF screws up in our bodies is staggering when you start reading all the technical changes that occur in hormonal systems, skeletal muscle, the lungs' activity, blood vessels, etc. So double check your docs, stick with the program, and always hope for the best. Hang in there, Tom! Jon.


Debbie T, June 26, 2005 - Hello all, I just got my letter for being turned down for Social Security disability and can use some help. Yes, I did read the page here about it and it helped but I'd really appreciate any input anyone might have. I was self-employed insurance agent and limited my hours over time and kept working as long as I could. It finally got to the point that I was making mistakes and feared for the safety of my clients due to my inabilities of concentration, being able to keep appointments, follow through on even a part-time basis. How do I word this for them to understand?
     I certainly didn't mildly make the decision to not work - it was forced upon me from three hospitalizations from September through December, and the doctor (actually, 3 doctors) telling me I must stop workin; that my heart would not get enough better to work and that it would mean at some point either death or a heart transplant.
     My EF is 25 to 30% and I take Toprol-XL at 50mg twice a day and increasing (just gone off Coreg), lisinopril, Lasix, ambien, levexyol, effexor at 150, and Aldactone (spironolactone). One of my last days working for instance, someone would have to drive me, then I would get there and rest with my head on my desk for an hour. I took one call and realized I couldn't even follow up on that, passed the business to another agent and headed home sleeping the entire way home. I found it too tiring to eat at times, let alone do other things. I cant even maintain my own household records much of the time so I certainly can't take care of other's insurance needs.
     I wrote a lot more than this on the disability papers but they (the disability office people) said they see no reason I cannot perform my duties as an insurance agent. Mind you, I haven't been able to drive since February due to dizziness and rarely leave my home due to CHF and arrhythmias. Any words of wisdom are greatly appreciated. I just don't think people should have to have a lawyer when they aren't trying to hide anything, so no, I don't have one. Thank you in advance. Debbie. debs4246@yahoo.com


Debbie T, June 27, 2005 - Okay, I just read my own post. I stopped selling insurance because my clients deserved a clearer mind than mine - what in the world makes me think I have the ability to follow through properly on the SSD myself? I am seeking help tomorrow from a place called a.c.c.e.s.s. Has anyone heard of them? Advocating for Chronic Conditions, Entitlements and Social Securities. I would still appreciate anyone's ideas. Thank you. Debbie. debs4246@yahoo.com


Donna H's June 27 reply to Jon's June 25, 2005 - Thanks for the information, Jon. As I was discussing it with my husband we realized that Toprol-XL is a form of metoprolol and he tried that in the beginning, and it gave him severe headaches.
     As for recalled Guidant products, I hope that everyone checks their card carefully. When I saw that it said the models recalled were Prizm and Contak, I thought we didn't have anything to worry about because neither of those names appear on the card from Guidant. Today I decided to call Guidant just in case and even though his card only says Guidant, the model number is one of the defective ICDs. I am to call the cardiologist tomorrow to see what steps we take next. I would encourage anyone with questions about a Guidant ICD to call 1-866-484-3268. herdrich@grm.net


Evelyn G's June 27 reply to Debbie T's June 26, 2005 - Hi Debbie, My only advice is to get a lawyer. My experience was a lot easier after I hired my lawyer. I filed in July of 2003, received my denial in October of 2003, and then hired a lawyer. She sent my appeal in November of 2003. I was told it would be at least 13 months before I knew something (Michigan courts are slow) but we had a court date in February of 2005 and I received my first check this month. I wish you luck and remember that most people get denied so don't give up and don't refile, just appeal it. Good luck and God bless. Ev. eveysue@hotmail.com


Lawrence M, June 27, 2005 - Hello all, I am going in for a cardioversion Tuesday. I hope all goes well, and will let you all know. Love to all. Keep the faith. Lonnie. mutch38@earthlink.net


Patricia H's June 27 reply to Debbie T's June 26, 2005 - Hi Debbie, I read your recent post on the heart failure board and wanted to give you some encouragement. My situation was similar, and I was also denied for SSD the first time around. After much research, I found that this is pretty much standard procedure and few people are awarded without multiple appeals. I had naively applied the first time just using the forms they provided, ensuring they received all my medical records, then trusting them to evaluate them properly. After several months I received a denial which literally said, "you have a sufficient heartbeat for your prior work." Okay, I laugh about that now, but it wasn't funny at the time!
     In my experience, many of the disability determination personnel do not have adequate experience in reading medical records, understanding the conditions they are reviewing, and evaluating them according to their own rules of determination. I have a degree in Health Information Management and my understanding of health records and how to interpret and summarize them in layman's terms was of great help. So, after much research into the SSA rules, laws and regulations regarding disability decisions, I was able to put together a very comprehensive medical package of my records and their own policies and procedures that justified an approval based on my medical evidence. I won on reconsideration (your first point of appeal following your initial denial) with no problem, and without a lawyer.
     I'll be glad to help you any way possible, so if you'd like to e-mail me please directly,please do so. In the meantime, you may want to visit the website for the Disability Coalition. It has a great deal of useful information in the links section. One word of caution when visiting the site - the posts can contain useful information, but tend to be very negative. You may want to take some of them with a grain of salt. The Url is http://groups.msn.com/SocialSecurityDisabilityCoalition. mello.out@comcast.net


Roger G's June 27 reply to Debbie T's June 26, 2005 - Hi Debbie, Social Security disability is not easy to get. I was turned down the first and second time, hired a lawyer and applied for a hearing with a judge. The lawyer applied for an immediate decision without me needing to attend the hearing and the judge ruled in my favor. In a few short sentences it sounds like this was an overnight process but it all took about 18 months from the first application to the ruling with lots of paperwork, many frustrations and stress along the way.
     On the bright side, lawyers can only charge if the case is decided in your favor and I received a nice check. My child also received his benefits. My regular disability insurance was coming in over that entire period so I did not have problems with finances. The disability insurance company then claimed that the backpay from SSD less the lawyer fees was due to them and reduced my check by my SSD and my child's benefit. I did have to pay them my backpay from SSD but managed to keep my child's backpay by using the income tax laws, which are even more frustrating than getting SSD. You will usually only need to pay tax on a portion of your SSD income. Since I had to pay it back to my regular disability insurance company and it was for several tax years it was quite confusing.
     I kept my child's SSD by claiming that the regular disability income was paid to me and taxed on my income. The child's SSD benefit is paid to my child and taxed as part of the child's income, not mine. Since my child did not receive income from the regular insurance company, there was no way to pay them back from his taxable SSD income and claim the payback on his taxes. This confused the disability insurance company and they could not figure out what to do, so they dropped the payback on the child benefit.
     Be sure to appeal with SSD within their time limits and perhaps expect to be declined again. Then get a lawyer and go for the hearing with the judge. I wish you luck. rogergthree@earthlink.net


Richard W's June 27 reply to Debbie T's June 26, 2005 - Hi Debbie, I understand your frustration and disappointment. My disability application was declined twice by Social Security. On the third try, it was accepted. Why?
     I hired a lawyer, not just a lawyer but the shrewdest,toughest legal tiger in Ohio (where I live) - one who specializes in Social Security cases and most particularly, specializes in winning. I wanted the meanest, baddest dog on the porch and I found her. A tigress, actually. One who knows how to win. She took my case because I camped at her doorstep until she saw me. She also smelled money. Lawyers have an acute sense of smell. She agreed to take my case on a contingency. That's because she asked for back payments which would amount to serious money, from which she, of course, would extract her cut.
     She sent me to her doctors for a review. Some doctors know how to write Social Security friendly reports, some don't. Doctors are not lawyers. Mine didn't. Hers did. She prepped me for court. Credibility is key. Nobody had to tell me not to dance into court waving an umbrella over my head. Still, there are certain questions that will be posed and it helps to answer them correctly. I took the stand and we won.
     That's how I did it. You mention that no one should have to hire a lawyer when you have nothing to hide. That's true. If you feel you're sacrificing principle by hiring a lawyer, I admire you for adhering to principle. However, you asked for words of wisdom, not principle. I took that to mean practical wisdom. Richard W. CClmbs@aol.com


Shane R's June 27 reply to Debbie T's June 26, 2005 - Hi Debbie, I'm speaking from my own experience with disability. I got it without a problem the first time around, but lost it at my 4-year checkup. I wound up getting a lawyer and having to appeal it the second time around. Getting a lawyer involved doesn't mean you're guilty or anything, but it sure helps with all the hassle.
     Also, if they did you like me, the doctor you went to was a general care doctor, not a cardiologist. The first time around even she could see the problem, but the second time she said I was fine even though my cardiologist said otherwise. So, appeal until you see a cardiologist. Even though it may seem like you versus Social Security, most of them actually are on your side. Hang in there. strikeapose71@yahoo


Roger G's June 27 reply to Donna H's June 25, 2005 - Hi Donna, You were questioning the Lasix dose of 320 mg. My PDR shows the maximum dose as 600 mg daily. rogergthree@earthlink.net
 
Jon's note: For what it's worth, I wouldn't take more than 320mg Lasix - I would get myself switched to a more powerful diuretic like Demadex or Bumex. Demadex is better for CHFers anyway.


Pat H, June 27, 2005 - Hi, I first became ill with CHF about 13 years ago and was hospitalized, etc. At that time, they found that I had a problem with my aortic valve. I took all the medicines and did fine until I changed doctors, who took me off some of the medicine. Within a year I was told I had to have my aortic value replaced and once that happened, I wouldn't have to take any heart medications. My first doctor had said it was two separate things.
     Anyway, I had the surgery then no heart meds, then back into heart failure within four months. Then he put me back on all the meds. He says he still believes it was the valve problem which caused the CHF. Personally, I think the first doctor was correct and it's two separate things. Any thoughts? Will there come a time, since I now have a mechanical valve, when I wll be able to get off all the meds? I take Digitek, Aldactone (spironolactone), Micardis HCT, and Coreg. Thanks for any input. phicks@mpvlaw.com


Jon's June 27 reply to Pat H's June 27, 2005 - Hi Pat, This is precisely why we all need heart failure specialists. It doesn't matter at this point which came first, the valve dysfunction or the CHF. Once you had heart failure for a long enough period of time, all those things I told Tom S about the other day also went haywire in your body - all part of CHF.
     You should never have been taken off your meds and the official treatment guidelines say so in no uncertain terms. If your valve was the cause of your heart failure, and if it had been replaced as soon as the valve dysfunction was found, yes, you might have eliminated all future CHF. However, that didn't happen. You are probably stuck with the meds now. Just my opinion.
     On the bright side, you should do quite well on the meds now that you no longer have the valve dysfunction. Jon.


Marie H, June 27, 2005 - Hi, I was diagnosed with CHF and COPD last February. The doctor put me on some meds and gave me a few directions but that is all. I've come across this web site, which is full of information and I don't even know where to start. Is there somewhere to start for a beginner just finding out about this diagnosis? Smallkdsteach4@aol.com
 
Jon's note: Go to the Site Index and then click the very first link at the top left, named, "Please Start Here!


Roger G, June 28, 2005 - Hi All, I was just on the phone with my electrophysiologist about my ICD implant on July 7th. With all the concerns about the Guidant devices I was curious which device he planned to use. He tells me he will use a St. Jude device. Has anyone else had a St. Jude ICD implanted?Thanks. rogergthree@earthlink.net


Chuck F, June 28, 2005 - Well, After a year of being poked and prodded, and numerous phone calls, I finally have been approved for disability. It will be 45 to 60 days yet before I start getting my checks but it is a good feeling to know that I will finally be having some money coming in! chfrancis@adelphia.net


Roger G's June 28 reply to Marie H's June 27, 2005 - Hi Marie, I read your post about where to start. You are at the start. Work with your cardiologist to learn what is best for you as well as all the super information Jon has put here. We are all different and what is best for me may be worst for you. I have a super cardiologist that I can talk with. Perhaps that is the place to start. Then as you learn more about yourself and CHF and the meds, you can begin to recommend to your cardiologist (as I and many others do) what is best for you. Here is a good place to start learning about the meds and others experiences (thanks Jon). I wish you a long and strong learning experience. rogergthree@earthlink.net


Molly, June 29, 2005 - Hello, Recently, my dad (62 years old) suffered a stroke. While in the hospital they did a routine echo and found an EF of 25 to 30%. It was unrelated to the stroke and a shock. He was having no symptoms of a low EF (he is in awesome shape), so they decided to do a nuclear stress test. This test showed an EF of 35 to 40%. A meeting with a very uninformative cardiologist followed and he put more credibility in the echo for reasons which he couldn't really explain. So, based on your experiences, which test is more accurate?
     By the way, we have an appointment with a different cardiologist next week. My dad is recovering very well from the stroke! Thanks so much! mols@frontiernet.net


Karen K, June 29, 2005 - Hello, I have a curiosity question that I've kept to myself; I think afraid to ask because it seems somewhat odd. About 5 years ago I stopped going to an internist for treatment and started seeing a heart failure specialist (a department head) at the University of Iowa Heart Failure Clinic. I have 24-hour access to a nurse who also sees me at every visit. Blood work is done at every visit, every 6 months, but that is all the testing I've had done. I do the infamous six-minute walk test at each visit and feel I perform very well.
     I am asymptomatic, take the standard meds (Lasix, spironolactone, Lanoxin, Coreg, and benzapril. I was diagnosed in 1991 with idiopathic cardiomyopathy although my father died when he was in his 50s from CHF/cardiomyopathy supposedly the result of a virus. I admit to having done very well. I am more limited by back problems than by my heart.
     I'm just curious about the test that I read about here that I don't see performed at the clinic I use. I am having eye surgery next month and had asked my CHF doc if I could possibly go to Tanzania for two weeks in January. He has scheduled a MUGA. I'm almost afraid of the results. Because I usually feel so well, one would think that my EF must have improved but the last time a MUGA was performed my EF had dropped from 38% to 32%. I think I would almost rather not know because although it will all be in my head, if my EF has dropped I'll go through a period of depression and concern.
     I live life to the fullest. I am recently divorced, which turned out to be one of the best things I could have done. I feel free and untethered. My ex was quite controlling and I allowed him to be. He was diagnosed with MS in 2000 and his demeanor changed dramatically. He began having unbelievable rages for no real reason. He eventually pushed me to the floor and I called 911 instinctively. He claimed I planned it as I'm a domestic violence volunteer but there was no premeditation at all. He remarried less than 2 months after the divorce.
     I'm sorry I've gone on so long. I haven't posted for quite awhile although I religiously read the new posts. I found out about Coreg on this site and learned so much. I guess my main thought is whether I should be having more testing done when I visit the Clinic. Sometimes the doctor doesn't even listen to my heart. Opinions welcomed. Karen. karenk@machlink.com


John D's June 29 reply to Roger G's June 28, 2005 - Hello Roger, I have had a St. Jude V-235 since June of 2003 and am more than pleased. After much investigation I feel that they are superior. Good luck. johndavidw@sbcglobal.net


Patricia M's June 29 reply to Roger G's June 28, 2005 - Hi Roger, I had a St. Jude resynchronization pacemaker/ICD implanted November, 2004 and so far no problems at all. The St. Jude reps were always there for my follow up visits and were very helpful and willing to explain anything I wanted to know. I am now on a remote monitoring schedule, and it's the greatest! mello.out@comcast.net


Debbie M, June 29, 2005 - Hi, How many CHF patients have trouble with confusion? I'm a spouse of a CHFer and he's having the same trouble he did two weeks ago - confusion, trouble getting words out, and they did all these tests and everything came back normal except his Co2 was a little high and they had me turn the oxygen down to 2.5 liters per minute.
     This morning, he's starting it again and I know there's nothing else they can or will do. In the meantime, I don't know what I can do to improve the situation. I really think he's not getting enough blood/oxygen to the brain. I have an oxygen and heart rate machine at home and those are within normal limits.
     Does it come and go in spurts? We both agreed we are done taking him to the ER doctors. I think they think we are neurotic. Could this mean his heart failure is getting worse? If so, why would the tests be somewhat normal? I did get a copy of all the labs and I have to admit nothing was really out of the ordinary. Any advice would be appreciated. Thanks! dmcconnell@unioncentral.com


Sandy N, June 30, 2005 - Hi Jon, I have a great site that may be of help to some of your board members if you would like to share it with them. Keep up the good work. Sandy. http://www.needymeds.com/indices/brandname.shtml. bleuskiiisgrl@yahoo.com
 
Jon's note: A link to this site and to nine other drug assistance sites are listed at our links page. ;-)  See chfpatients.com/links.htm#rx.


Sandy N's June 30 reply to Debbie M's June 29, 2005 - Hi Debbie, I have CHF and my family all laugh at me. I can never get the words out and forget so much. They help me with remembering also. I have never gone to the emergency room with this. My doctor told me to expect a confusion of words and it has been this way for a few years now. I'm much too young for this but am not letting it bother me. My family all joke about it and call it a brain fart. Good luck to you and your husband. bleuskiiisgrl@yahoo.com


Randy M, June 30, 2005 - Hi, I had a heart attack in December and have been in cardiac rehab now for about 10 weeks. My cardiac rehab treadmill settings are 3.7 mph at an 8% incline for 17 minutes, then 10% incline for 3 minutes at the same speed. I talk and carry on a conversation at the same time. My cardiac rehab nurses say I'm doing great. Two days ago I had a echocardiogram and my cardiologist said I had a ejection fraction of 35% and needed an ICD.
     I told my rehab nurses about this and they all said if I had an EF of 35, I could not be doing what I'm doing on the treadmill. Now I'm confused on if my doctor knows what he's doing or if he just made a mistake or in cahoots with the ICD makers. My nurses said to get a second opinion with a treadmill stress test before agreeing to a ICD implant. Any advice? Thanks. randy50@texas.net


Jon's June 30 reply to Randy M's June 30, 2005 - Hi Randy, A few things come to mind. First, are you sure he wants you to have an ICD? Could it be a pacemaker or a combination ICD/pacer? This matters, as does his reason for wanting you to have one implanted.
     Second, never ever, ever take medical advice from a nurse unless that nurse is directly associated with your own doctor. Nurses are great as nurses, but they are not doctors! In this case, they have no idea what they are talking about, meaning they are dead wrong. EF often has very little direct relation to exercise ability - this is confirmed by the medical literature (studies and trials). That is why Vo2max testing is considered much more useful than echocardiogram for determining ability to function physically.
     Third, personally, I would get a second opinion before even considering an implanted device. The same for surgery, certain medication changes, and more. This is your life, I can't stress the need to take such decision-making very, very seriously. Jon.


Roger G's June 30 reply to Debbie M's June 29, 2005 - Hi Debbie, I read your post and it concerns me at a human level. If the doctors you are taking your spouse to can't see what the problem is or can't explain it to you, perhaps another doctor is the answer. And yes, confusion is a part of CHF, partly from reduced blood flow and partly from the medications, stress, insomnia and all the other things that I can't remember right now. I am not poking fun at you, I have just learned over time to have fun with my own memory problems. I have also learned that there are more than one type of physician. There are internists, cardiologists, other specialists, and Arrogantists. Avoid the Arrogantists and find a doctor that can communicate. rogergthree@earthlink.net


Andy P, June 30, 2005 - Hi, I recently switched from Lisinopril to Diovan due to the dry cough side effect some people seem to get from ACE inhibitors. I take 80mg in the morning and 160 at night. I had been having serious problems with extremely low blood pressure initially (70/40, lightheaded, dizzy) and my dosage was decreased from 160mg twice a day to the above.
     I've noticed two new side effects however, and wonder if anyone else experiences them. One was being extremely tired upon waking up - almost as if you are being shaken awake from a very deep sleep. The other is even stranger - very strange, almost psychedelic dreams. A Google search led to a few findings of similar reactions to Diovan. Has anyone here ever heard of this or experienced it? On the plus side, my cough is gone! andy@mrdatacorp.com


Marie H, June 30, 2005 - Hi, I wonder if anyone else ever experiences sudden bouts of perspiration mainly on the head and face? I used to think that it was caused by activity but it happened this morning when I was just drinking my juice and reading some mail. I also have COPD along with the CHF but I'm not sure which one is causing it, or maybe it's a medication I'm taking. Any help would be appreciated. Smallkdsteach4@aol.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.

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