The paperwork never ends The Archives
May 16-31, 2005 Archive Index

Natalie R's 5-16 reply to Jon's 5-12     congratulations
Jon's 5-16 reply to Natalie R's 5-16     proud papa
Niki L 5-16     introduction
Jack D's 5-16 reply to Mikey S' 5-15     why tea but not coffee?
Scott Brown's 5-16 reply to Lowell P's 5-15     kidney function, Coumadin
Jim W 5-16     seek heart failure specialist in Connecticut
Gino T 5-16     fusion complexes, BNP/EF, BUN/Creatine
Jon 5-17     BEV = PVC
Jacky B's 5-17 reply to Gino T's 5-16     can you simplify it a little?
John P 5-17     seek info on Conn's Syndrome, and more
Charles W's 5-17 reply to John P's 5-17     sleep and dreams
Jon 5-17     working, posts
Gino T's 5-18 reply to Jacky B's 5-17     fusion complexes
Karen D 5-18     seek cancer with heart failure experiences
Bethany T 5-18     seek comments or suggestions
Mary Drennen 5-18     how do I cope with heart failure?
Janet 5-18     what happened to MyoVive? & more
Jon's 5-18 reply to Janet's 5-18     MyoVive
Joy's 5-19 reply to Jacky B's 5-17     fusion complexes
Debbie T's 5-19 reply to Mary Drennen's 5-18     thank you - seek more input
Sandy N's 5-19 reply to Mary Drennen's 5-18     coping with heart failure
Bethany T 5-19     update on Larry, seek Tolvaptan info
Jim R 5-19     my experience - get a CHF specialist now!
Valerie R 5-19     coffee with less caffeine
Karen S 5-19     ICD issue with Medtronic
Karen S 5-19     ICD issue with Medtronic
Mike C's 5-19 reply to Karen D's 5-18     cancer and heart failure
Steve K 5-19     what can I do to ease side effects?
Norma W 5-20     seek experience with different vitamin E forms
Mary Anne M's 5-20 reply to Steve K's 5-19     Coreg experience, seek pacer info
Jacky B's 5-20 reply to Joy's 5-19     thanks!
El Requa 5-20     will saline nasal spray hurt?
Bethany T 5-20     what causes this chest pain?
Charles W 5-20     why this kind of job?
Lowell P 5-20     diuretics only as needed approach question
Jon 5-22     caffeine, tea, coffee and heart failure
Nancy L 5-22     does it get worse than this?
Donna C 5-22     seek ICD "noise" experiences
Scott Brown's 5-22 reply to Steve K's 5-19     be sure to check your medical records
Mary Ann 5-22     really, really need some input
Sandy N's 5-22 reply to Nancy L's 5-22     coping with CHF in the family
Sandy N's 5-22 reply to Lowell P's 5-20     when to take diuretics
Jon's 5-22 reply to Lowell P's 5-20     when to take diuretics
Valerie R 5-23     drinking tea
Lowell P's 5-23 reply to Jon's 5-22     thanks for the info
Jon's 5-23 reply to Lowell P's 5-23     no more job, welcome back heart failure
Mikey S 5-23     caffeine, heart cell damage
Jon's 5-23 reply to Mikey S's 5-23     caffeine, heart cell damage
Marian V's 5-23 reply to Valerie R's 5-23     why avoid herbal tea?
Clara D's 5-23 reply to Valerie R's 5-23     why avoid herbal tea?
Anita S 5-24     let's keep this site going
Peter S 5-24     some financial possibilities
Jon's 5-24 reply to Peter S' 5-24     site finances
Tunny G's 5-24 reply to Mary Ann's 5-22     amiodarone (Cordarone)
Susan D 5-24     seek sleep disorder experiences
Larry 5-24     seek joules and volts information
Jon 5-24     just an update on my doc visit
Mikey S 5-25     working, weight lifting
Neal M 5-25     seek Australian agencies experiences
Debbie T 5-25     seek job/CHF experiences
Jon's 5-25 reply to Debbie T's 5-25     my recent experience
Steve H's 5-25 reply to Mary Ann's 5-22     my amiodarone experience
Linda B 5-25     how does diastolic CHF show on EKG?
Jennifer G's 5-25 reply to Susan A's 5-24     sleep study experience
Sandy N's 5-25 reply to Susan A's 5-24     sleep study experience
Gene G's 5-25 reply to Sandy N's 5-25     sleep apnea machines and masks
Barb N's 5-25 reply to Sandy N's 5-25     sleep apnea machines and masks
Gena G 5-25     weight gain and other questions
Joyce 5-26     this illness is very hard on caregivers
Wayne R 5-27     helping others fight heart failure
Tom S 5-27     living with heart failure
Mary D 5-27     seek ICD experiences
Sandy N's 5-27 reply to Barb N's 5-25     thank you for the info
Valerie R 5-27     clarification on drinking tea
Susan A 5-27     transplant, memorials, sleep disorders & heart failure
Gino T's 5-27 reply to Mary Ann's 5-22     about your son's treatment
Roger H's 5-27 reply to Susan A's 5-24     sleep apnea experience & to Lowell
Julia P 5-27     does Coreg affect unborn babies?
Barb N's 5-27 reply to Sandy N's 5-27     web site for CPAP users
Sandy N's 5-28 reply to Mary D's 5-27     best wishes
Tunny G's 5-28 reply to Barb N's 5-27     CPAP experience & more
Diana W 5-28     seek info on therapy
El Requa's 5-28 reply to Mary D's 5-27     ICD and BiV pacer experience
Scott Brown's 5-28 reply to Gina's 5-25     weight gain
Lori K 5-28     test results questions
Christine Schultheis 5-28     phone interview offer
Robert M 5-30     seek experiences with depression
Louie K 5-31     interviews
Robert G 5-31     what can I do about swollen ankles?
Scott Brown's 5-31 reply to Lori K's 5-28     EF, heart size, and Vo2max
Krista L's 5-31 reply to Mary D's 5-27     ICD shocks and more
Mervyn Johns 5-31     seek ideas on cough and treatment
Jon's 5-31 reply to Mervyn Johns' 5-31     some ideas - and an important message for everyone

Natalie R's May 16 reply to Jon's May 12, 2005 - Hi Jon, I share your joy in this family milestone. How wonderful that you were around to share your daughter's big day. I am so glad that some of the joy that you make go around has also come around!

Jon's May 16 reply to Natalie R's May 16, 2005 - Hi everyone, Well, all the old-timers around here remember me bragging on my daughter. I quit and removed all information about her from the site when some security issues arose. However, now she resides out of town and is no longer in school, so I'll take this opportunity to exercise webmaster/papa's bragging rights!
     Linz just graduated summa cum laude with a double major of accounting/management information systems from a very respected private university business school. She worked through college at the university computer lab, finishing as the senior technician. She starts as an internal auditor for one of the big three accounting firms in a couple of weeks, a job she has already done as a summer intern.
     To top off my bragging, while in high school she was a published poet, an accomplished musician taking second in regionals for voice, one of the top five in national French language competition, a state finalist in both individual and group cross country track, and a whole lot more that would really bore you! <g> Okay, I've done my bragging - back to more appropriate topics. Jon.

Niki L, May 16, 2005 - Hi everyone, On 02-15-2005 I went to an ER at a local hospital thinking I might have a "touch" of pneumonia - little did I know. After several hours, in comes the cardiologist and informs me I have CHF and he wants to admit me. After a good 10 days of treatment of this, that and the other, it was decided I needed a heart cath. Okay, so I have two arteries 100% blocked and one only 50 to 70% blocked. On 03-04-2005 I endured triple bypass surgery and spent the next few days in misery.
     I was released on 03-10 (my birthday) sicker than a dog. I don't even know how I made it through the next 5 or 6 days. Man, it all stayed somewhat miserable and on 03-28-2005 I had to return to the ER with CHF symptoms once again. My BNP at this point was over 4500! Can you believe that I was sent home without a diuretic after my surgery?
     Anyway, I lived but am dragging around trying to get used to all this. All these drugs I hafta take now. My cardio is going real slow on upping the Coreg. I'm still on 6.2mg twice a day at least until June, even though I first started Coreg on 03-01 and was upped to my current dose 04-13. Niki.

Jack D's May 16 reply to Mikey S' May 15, 2005 - Hey, Why do you avoid coffee? Tea has caffeine too.

Scott Brown's May 16 reply to Lowell P's May 15, 2005 - Hi Lowell, I wonder if you are worrying about things prematurely. If you have a change in BUN/creatinine ratio in one month, it really means very little. A few more months of testing will help reveal the trend. There are lots of reasons a single test can be slightly off.
     Coumadin use is relatively safe if you follow all the precautions. I'm not sure why your doctor has had so many patients with head injuries (as long as you make sure your doctor is not holding a lead pipe in his hand - haha). My father was on Coumadin for at least 10 years without incident. He would have his blood tested every month and modify the Coumadin dose accordingly. Good luck. Scott B.

Jim W, May 16, 2005 - Hello all, My mom has CHF and is being treated by the cardiac group she has been with for 25 years. Her problem seems to be getting worse but I do not see her cardiologist treating her specifically for CHF. I would much prefer to see her in the hands of a CHF specialist. She lives in Connecticut. Can anyone recommend a heart failure specialist in the area? Thanks.

Gino T, May 16, 2005 - Hi Jacky and everyone, The term fusion refers to the morphology of complex if it occurs between a PVC (or a paced beat) with narrow beats, the duration will be less than that of a full PVC with a morphology that resembles partly the PVC and partly the normal beat. In this case the fusion complex would resemble the LBBB and partly the PVC. The fusion complex has the same meaning of a PVC.
     BNP and EF - BNP in the individual patient has a stronger prognostic significance than small variations of EF. Another key factor to consider is the variability in the EF measurement. Small variations (5 to 7%) may be a matter of interpretation (occur for inter-observer or intra-observer variability).
     Regarding rise in creatinine - A rise of 0.3 of creatinine (as in from 1.5 to 1.8 ) really is significant and the doctor is right. You should start to reconsider the amounts of salt and fluids you take in to adjust the lower effective dose of diuretics (strictly monitoring body weight). Other possible causes of rise could be the ingestion of drugs hard on the kidneys (like NSAIDs) or a urinary infection. The ratio BUN/Creatine is a good aid to understand the possible cause of worsening kidney function. A high BUN/creatine usually is associated with a hemodynamic impairment of kidney function like low blood pressure, dehydration, excessive diuretic doses, and so on. Finally when the creatinine rise (overall with a coexistent diabetes, ARB and/or ACE inhibitor and spironolactone therapy) you should have your hematic potassium level checked. Ciao.

Jon, May 17, 2005 - Hi all, Gino was thinking in Italian when he used "BEV" - I changed it to PVC in his post above. <g> BEV (Battito Ectopico Ventricolare = Ectopic Ventricular Beat) Jon.

Jacky B's May 17 reply to Gino T's May 16, 2005 - Sorry Gino, You lost me! The first paragraph is the one that interests me but I didn't understand much. Is the advent of fusion complexes on an EKG report good or bad? Good to hear from you!

John P, May 17, 2005 - Hello all, This is my first post. I am a 48 year old from Australia and I am coming up one year in June since being hospitalised with CHF, caused by still unresolved hypertension. I am struggling a bit. I take 360mg Cardizem (diltiazem), 8mg Coversyl, 2550mg Metformin, 40mg Lipitor, 25mg spironolactone, 120mg furosemide, 40mg Nexium for reflux, 100mg aspirin plus 9 other mineral supplements, aminos, antioxidants, etc.
     My hypertension specialist has been treating me for Conn's Syndrome, but has been unable to test for it yet because I have been unable to tolerate the hydralazine he wants me on in order to do the hormone testing. I have not been able to find much information on this condition, other than a tumor in the adrenal glands which causes production of certain hormones that raise blood pressure, usually causes it. Does anyone else have this condition or know where I can find more information?
     In response to some previous queries, my calcium channel blockers when taken later in the day give me the most amazingly vivid dreams, so real they almost always wake me up and leave me thinking about them all day. I was warned they would do it and they did not disappoint. Another explanation may be that as a CHF sufferer, you like me don't sleep properly. The compensating of your condition may be allowing you a couple of normal sleep cycles per night and probably at least one rapid eye movement cycle where dreams happen.
     My specialist told me that if I wanted a little caffeine to counter the dulling effects of some of my drugs, that green tea was the way to go. He said the relaxing properties of green tea somewhat balanced out the hyper properties of the caffeine. It also helps with reflux problems by settling the stomach first thing in the morning. I find it has helped.
     I can't believe the prices you have to pay for your meds and doctors visits in the USA. It is hard enough suffering physically, but being financially crippled as well is a heavy burden. When I read about the hardships some people are enduring my road seems somewhat unfairly easier. This site has been a terrific recourse for me, allowing me to gain a fairly competent understanding of my condition and therefore a little more control over the direction it takes. Take care all and thank you for the opportunity to participate.

Charles W's May 17 reply to John P's May 17, 2005 - Hi John, I'm fasincated by my vivid dreams. I'm not on your meds but I too have dreams so vivid that I can't believe they came out of my brain. I happen to be somewhat Freudian, so I use them to help me sort out what's going on in my life. I too have trouble sleeping, like you. I wake up feeling so very, very tired, as if I haven't slept at all.
     Would sleeping pills help? Have you had any experience with Ambien, or one of the others? I don't want more medication, I want less, but I would love to have a good night's sleep. Charles W.

Jon, May 17, 2005 - Hi everyone, Well, I get up tomorrow at 4:30 in the morning to make it to another first day at work. This job came out of the blue today. It's low pay industrial and I don't know if I can sustain it but I simply have to make some money to help pay the bills around here. Anyway, I will have a very long day tomorrow with an early start and 90 minutes of physical testing after my shift at some clinic - roughly 6 AM to 6 PM - so I don't know if posts will go up. After that, it should be a job with regular hours, so no problem. We'll see. To all you Christians out there, some prayers for me, please. Jon.

Gino T's May 18 reply to Jacky B's May 17, 2005 - Hi Jacky, Yes. Usually fusion complexes have the same clinical meaning as PVCs (and usually are benign). If I remember well you have a holter monitor scheduled. It will clarify how many and what kind of arrhythmias you have in order to establish the proper therapy.

Karen D, May 18, 2005 - Hi, Does anyone have this problem? Someone I know had a colon resection 02-16-05, diagnosed with colon cancer, mets to the liver (? about 20%). Two weeks after his first chemo round, the assumption is now that his potassium level got so low that it caused left ventricular failure and newly diagnosed a-fib. He aquired nosicomial pneumonia 3 weeks ago and now questionable CHF (family is questioning). He had 2 liters of fluid on his right lung. The cardiologists have written him off, since loading him with amiodarone. They won't manage his cardiac problem due to the cancer. Is this standard medical practice in the cardiology world?

Bethany T, May 18, 2005 - Hi, I am wondering about some symptoms my husband (diagnosed with CHF June of 2002) is having and if they could be related to his CHF. He has lost his appetite for about the last 2 weeks and is now having diarrhea. He has had other symptoms worsen lately as well. He is much more short of breath and gets lightheaded easily. He is also having a lot more chest pains on and off throughout the day.
     I don't know for sure what is going on. He has been pretty stable, doesn't have any sign of coronary artery disease, and has been trying to return to work. The doctor has talked about maybe doing a heart cath. We go in today at 2:30 PM for a consult as to what to do. Any input or thoughts you have would be appreciated. Thanks.

Mary Drennen, May 18, 2005 - Hi all! I have been a lurker here for a few weeks, but decided to join in and post. I am a 46 year old female who was diagnosed with CHF (dilated cardiomyopathy). I also have a 2 chamber pacemaker that been in for 3-1/2 years. I am on short term disability but they are looking to put me on long term. I will know the company's decision by July 14th.
     I am having trouble dealing with the CHF. Even after going through phase 2 cardiac rehabilitation, there is not much improvement. Is this normal? I was diagnosed on January 7, 2005. I'm on Toprol, digitalis, Altace, Aldactone and Lasix. I guess this is all the usual meds.
     Any suggestions on how to continue dealing with the feeling like you're gonna die any minute? I'm going to the doc Tuesday and will ask if the depression is from the meds or me. Anyway, I appreciate this site and hope to be a steady part of the it. Thank you.

Janet, May 18, 2005 - Hi, Does anyone know the story around Myovive? It was used in clinic trials for heart failure and showed promise. It was a combo supplement of CoQ10, carnitine and taurine. I called today and they said it had been off the market for several years. Does anyone know what happened? Is there any new combo supplement available for CHFers with these 3 ingredients? Thanks, Janet.

Jon's May 18 reply to Janet's May 18, 2005 - Hi Janet, It was replaced by a far less well-thought out and less potentially effective pill form not well designed for people with CHF (MyoVive was a liquid supplement by Nutricia). A couple of years ago, MyoVive was still being sold in some European countries as far as I know. Strangely, MyoVive's formula was largely designed from the information and patient interaction on this web site. Too bad it didn't make it. Jon.

Joy's May 19 reply to Jacky B's May 17, 2005 - Hi Jacky, I hope I don't muddle the picture anymore by giving you a nurse's point of view of fusion complexes. Like Jon explained, if the ventricles are activated from two different sources at the same time, you see on the monitor or EKG paper something that kind of looks like a PVC but isn't. Normally the atrial impulses are conducted to the ventricles by AV node-His-Purkinje system to ventricles. If an accessory pathway is used initially and then one from a normal pathway, you get fusion complex. Again, it looks kind of like a PVC. If you look at my dog you get to thinking, what the heck is that? He is a mixture of a basset hound and a black and tan coonhound. If you look at him around the front legs and face he is the basset. His color is definitely black and tan coonhound. When looking at these fusion complexes you need to start at the basics for what is a normal expected sinus (regular) beat.
     What does all this really mean? If isolated complexes, not much. When you see fusion complexes in patients with wide QRS you are usually looking at a patient with ventricular tachycardia, not supraventricular tachycardia. They are treated differently. This is what needs to be addressed with the treatment. When working and learning initially how to read EKGs, a simple but easy approach to looking at a usual run of PVCs is to think of them as monks with humps on their backs. Sorry all you hooded monks out there. but thats what they look like. Of course the rate at which these "monks" are running is also very significant but that's a different rhythm. Of course, textbook PVCs and true PVCs can be sooooo different, same as fusion complexes. The EKG machine when it interprets fusion beats will usually print out "fusion complexes" but they need to be read and verified as such. I hope I haven't totally made it worse. Joy.

Debbie T's May 19 reply to Mary Drennen's May 18, 2005 - Hi Mary, What is phase 2 cardiac rehabilitation? I was just put on Toprol-XL. How is it working for you and what dose might I add? I had been on Coreg at 25mg twice a day since September. I was having fainting spells and episodes of no breath, and they determined from an event monitor that my heart was speeding up and causing it. They put me in the hospital and put me on sotalol for two dosages and then a different doc out of the practice pulled that and gave me prescription for Toprol-XL and sent me home.
     The nurse said she was shocked because I was having a-fib and something about P-wav. She showed me that there was one which was started by my pacemaker. I've beeen hospitalized three times in the past eight months - twice for CHF and once for pacemaker (biventricular and ICD) which took two surgeries (with a heart surgeon the second time) to get it done; Oh, and another time when they changed the med just last week. My pacemaker was implanted in October.
     I was also wondering how you folks are doing with Social Security disability. My EF is 25 to 30% at best and I have 4 valve regurgitation. I was just told I have supraventricular tachycardia which when I read up on it sounds like what the nurse was saying - that my atrial chambers were quivering and that is why i fainted. Yet the name sounds like it is the ventricular chambers.
     I think I lack oxygen to my brain and feel very stupid. I used to be an insurance agent and used to feel confident but I don't anymore. I've read The Manual. I think I've read the entire site but still feel I need to learn more. Your input is greatly appreciated, and thank you Jon for this site. Debbie.

Sandy N's May 19 reply to Mary Drennen's May 18, 2005 - Hi Mary, I too went through depression and yes, it's both meds and you. Since my doctor put me on Lexapro, I'm feeling so much better about having CHF. Learning to live with heart failure takes time and a great attitude. Now after my two year diagnosis (age 56), I can get through each day with such a better attitude about my illness. Yes, I feel bad and have the usual symptoms but after the help from a good CHF specialist and from all the good people on this board, I can better understand why I feel the way I do and have learned to cope.
     Try to exercise more and keep active, also read a good novel each night - it gives your mind something else to think about. Now, knitting for my new grandchild keeps me looking towards the future. Good luck to you.

Bethany T, May 19, 2005 - Hi, I am just updating you all on my husband Larry. He was diagnosed with CHF in June of 2002. He has been off disablility (according to insurances) since the end of last year. He was in retail marketing and couldn't go back to that so he went to school and got his license for Nursing Home Administration. He has yet to find a job but the Lord is good. I had just posted yesterday about some symptoms that he is having. We went to the doctor yesterday and they said his CHF is worsening. Now they want to start him on a new drug therapy (he is on Coreg, diovan, Lasix, warfarin, digoxin (Lanoxin), spironolactone and Lipitor). This new drug is still in the research phase so he really won't know if he gets the meds or the sugar pill. He goes in Monday to the hospital where they will "tune up" his heart with some IV meds and then go from there. The drug is Tolvaptan. Has anyone heard of this? Do they have any info for me? Anything would be great.
     Now he is back on total disability and no work. He is a little discouraged. You really learn to live life one day at a time with this condition, don't you? Something really we all should do but don't think about it until it is a real necessity. Thanks.
Jon's note: See

Jim R, May 19, 2005 - Hi, I have only been diagnosed with CHF since March of 2005, when I was hospitalized for a week. I was given a heart cath and an echo with doppler. My EF was 10% and 15% respectively. I was started on 5mg Zestril and 3.125mg Coreg twice a day and told to go back to work. This didn't work out. I finally got in to see a heart failure specialist and he has increased my Coreg and says I wasted all that time. I am now told I am class 3, not class one and again have fluid in my lungs that I feel.
     So everyone, don't wait! Get a heart failure specialist and not your family doc. Thanks for listening. Jim R.

Valerie R, May 19, 2005 - Hi everyone, I don't know if the danger of coffee is caffeine or not, but Maxwell House Lite has 1/2 the caffeine of their regular and tastes just as good. Val.

Karen S, May 19, 2005 - Hi everyone, I haven't been around for awhile. My husband has CHF and has an ICD. We were surprised when we went to the electrophysiologist yesterday for a regular visit to find out that an alert was placed on certain ICDs in February. Apparently, in a small percentage of Medtronic ICDs the batteries die quickly without warning. People at high risk for sudden cardiac death should have them replaced. They can't just replace the battery, they have to replace the entire unit (not the leads). We are waiting now to find out when he can have his replaced. Until then, he has to check it each morning with a magnet to make sure it's still working. Take good care everyone. Karen S.

Karen S, May 19, 2005 - Hi everyone, Since my earlier post today, I have gone back and read The Archives and read what I missed - which was a good lesson in keeping in touch with this site. I would like to hear from anyone with good or bad experiences with ICD replacements and payment for the same, since I've lived through past insurance nightmares. Thanks, Karen S.

Mike C's May 19 reply to Karen D's May 18, 2005 - Dear Karen, It is an unfortunate story about your friend. Chemotherapy is deadly - that is how it works. In this person's case, the chemo was probably used to slow the progression of cancer rather than cure it. Without knowing his pre-chemo cardiac profile, it would be unwise to make any assumptions why he went into ventricular failure. In other words, he may have had CAD and cancer, and his heart was much more vulnerable to injury with a suspected low potassium level.
     When you are dealing with a very sick patient, cancer with distant metastases to a major organ, hospital acquired (nosocomial) infection, you are looking at the final stages of life from multiorgan systems failure. The cardiologist did what he could do to get the patient out of a-fib - amioderone and IV Lasix to clear the fluids. I don't think the cardiologists wrote the patient off. I think they knew they weren't going to save him. They are not going to insert a defibrillating pacemaker. They wouldn't even consider a stress test. Why? It will not change the outcome. They can only treat the symptoms and pain.
     Sorry for the bad news of your friend. Mike C.
Jon's note: I just have to comment but am too tired to get detaile - chemotherapy is incredibly well-documented to cause heart failure and oncologists who treat cancer are infamous for not properly tracking cancer patients' heart function throughout treatment.

Steve K, May 19, 2005 - Hi everyone, I am 36 and new to all this. There are really not any questions, I just wanted to talk to someone. In July of 2004 I went for a checkup and due to my family history I had some tests done. I had no symptoms at all - my blood pressure usually always is 120/70, pulse 65 to 75. All looked good except for an EF of 49%. I know, what is the problem? I did not know what was good or bad at the time.
     Anyway, the doctor put me on Coreg at 3.125mg twice a day and increased this to 25mg twice a day. I then became symptomatic with chest pain, shortness of breath, etc. The doctor reduced my Coreg back to 3.125 mg twice a day again. So I changed doctors in December of 2004. My EF is now 65% and the new doctor took me off all meds.
     In January of 2005, my EF measured 30% and I stayed off meds until April of 2005 because I was very weak and becoming symptomatic - remember I felt fine prior to July of 2004. My new doctor put me on Lanoxin at 0.125 mg, Capoten at 6.125 mg and Coreg at 3.125 mg. My blood pressure dropped out, I stopped taking Capoten but still feel funny. I have had several echos, EKGs, a stress test (13 minutes to get 150 bpm), heart cath. They were all normal. The doctor told me there is no reason he can find causing the problem, but knows my EF goes down if I stop taking the meds. I don't know where I go from here but one look at my kids, I need to know.
Jon's note: One obvious choice is to switch from Coreg to Toprol-XL, which has fewer side effects and is much better tolerated in patients who have trouble with Coreg.

Norma W, May 20, 2005 - Hello all, Does anyone know if vitamin E in tocotrienol form is more effective than the alpha-tocopherol versions? I have been taking 400 IU of the latter for some years, but recently read an article that the former was 60 times more effective in protecting cells from oxidative damage. I purchased some today and will try them for a couple of months, but it would make me a lot more confident if I could hear from someone who has switched to tocotrienol, as they are very expensive. Thanks for any information. Norma W.

Mary Anne M's May 20 reply to Steve K's May 19, 2005 - Hi Steve, After two attempts to use Coreg, I bailed out both times. It made me feel awful, even beginning at very small doses. I went back to Toprol-XL, which doesn't seem to bother me and does the job. Coreg may be the "magic" medicine but what about quality of life issues? I couldn't walk across the room without my head spinning, figuratively, that is. In general, how long does it seem to take to get approval for the biventricular pacemaker implant? Any info would be appreciated.

Jacky B's May 20 reply to Joy's May 19, 2005 - Thank you Joy, You really did make it clearer. I do have LBBB so it will be interesting to see what the docs say after my 24 hour Holter. Hopefully, I will hear soon. I am in a "busy waiting" mode which I hate but have started my squeaky wheel spinning. The heart failure clinic has become really bad at giving reports and answering phone calls. Jacky.

El Requa, May 20, 2005 - Hi everyone, I just passed my third week since my surgery and my new biventricular pacer. Other than the swelling and resulting pain, which I was told will last for a couple of months, I am feeling really good. I am feeling like I have more energy. I have been exercising every day - 20 minutes on a recumbant bicyle - and thinking of kicking that up to twice a day since I am not getting short of breath doing it.
     I finally got the Lasix dose high enough to alleviate the SOB. My BNP has come down and is in the 300s now instead of the 800s. I am so pleased that this seems to have helped me. I an looking forward to August when we do the echo and stress test to see where I am at now. The one thing I have noticed is the high doses of Lasix make my nose bleed. I have been using a nasal spray but it has saline in it. Is that form of salt bad? Am I inhaling salt when I use it, right into my system? I usually use it to moisten so I can blow my nose. So it doesn't stay in my nose but I can see how it could soak right into the membranes quickly. Any thoughts on this?

Bethany T, May 20, 2005 - Hi all, Another question for all of you: My husband, who was diagnosed with CHF almost 3 years ago, is complaining of chest pain. He has shortness of breath and chest heaviness, which the doctor says is typical for worsening CHF. However, he is experiencing some real sharp, pinching pain on his heart. The doctor couldn't explain this at all. Does anyone else have this kind of pain? Thanks, Bethany.

Charles W, May 20, 2005 - Hi Jon, I'm going to ask you a question you must be asked repeatedly. You're educated and articulate. You have a flair for translating complex subjects into every day language - often with humor - if CHF can ever be funny and sometimes it is. I know how difficult your style can be because I worked for twenty years as a copywriter with New York City ad agencies, where writing simply about difficult topics was a challenge. So why are you working at a low-level industrial job? Not that there's any wrong with that, there isn't, but wouldn't a job that's more taxing to your mind and less to your body be better?
Jon's note: Obviously - are you offering me a job?  <g> I have no non-millwork skills or higher education (just high school). I have applied for over 100 office jobs in 8 weeks. This job will almost certainly end for me when it gets really hot - no air conditioning. What I do then is keep looking and hope online donation levels improve through the summer months.

Lowell P, May 20, 2005 - Hello everyone, I have a friend who retains fluids but only takes a diuretic when he begins to gain weight or can see a depression in his flesh that remains after his finger is removed. Is this a common approach to dealing with CHF?

Jon, May 22, 2005 - Hi everybody, A report this month sheds some light on the coffee/tea/caffeine issue in healthy people. A study by Dr Charalambos Vlachopoulos shows that drinking black tea increases the stiffness of blood vessels for about one hour, then the effect disappears. Over the long run, drinking the tea may have a good effect on health. However, no one knows if that first bad effect is offset by long-term good effects or not. Artery stiffness is very bad news for us CHFers. The study was presented at the American Society of Hypertension Annual Scientific Session.
     This was a small, very short-term study but it included a tea group, a caffeine-only group, and a placebo group. It does show that tea has bad effects as well as good effects. Systolic blood pressure went up 50% more in black tea patients than in caffeine-only patients although the tea used had the same amount of caffeine. The blood vessel stiffness may disappear when the flavanoids in tea start working - about 2 hours after drinking the tea.
     Green tea has less caffeine than black tea but has more flavonoids. Dr. Vlachopoulos mentioned early results of another study at the conference using green tea. That study showed the same kind of results but green tea had less bad effect than shown in the black tea study.
     Coffee might have the bad effect on artery stiffness due to its caffeine level without the benefit of tea. Anyhow, it looks like caffeine may be a bad idea for us regardless. That would include diet soft drinks with caffeine as well. Jon.

Nancy L, May 22, 2005 - Hi, Thank you for a very informative page. My father is 80 and has end-stage CHF. He has been on Natrecor for about 8 months or so. Suddenly, it's making his blood pressure so low they had to stop it. So now they started IV Lasix, which was working but now that too is making his blood pressure drop, so that is not an option anymore. They are now sending him to a CHF specialist in Boston to see if there are any other options.
     He is 80 but very active and now he moves very slowly with shortness of breath almost always. He has diabetes, a defibrillator, has had two CABGs, l4 cardiac caths, and has 5 stents in his heart. I want to be realistic and to prepare my kids if this is the end for him. I'm just wondering, if you know, does it get much worse than this? I feel like I'm watching him drown! His abdominal girth is up to 54 inches and growing. I wish I could give him my heart.
     Thanks for letting me vent. I just felt the need to speak with someone who knows firsthand and experiences it, rather than with my family, co-workers, friends, etc,..., who mean well, but the connection just isn't there. Please include my father in your prayers. Thank you.

Donna C, May 22, 2005 - Hi everyone, I posted several weeks ago about the new ICD I received last May. In all three interegations since the implant, a thickened line that the technician interrepts as "noise" has shown up on the readout. It is indicating a rapid pulse in the atrium. This is a new development since the atrium has always shown a normal rhythm and the ventricle goes into ventricular tachycardia for unknown reasons. The doctor has never talked to me to explain this development, and two technicians have brushed me off. Has anyone had a similar experience?

Scott Brown's May 22 reply to Steve K's May 19, 2005 - Hi Steve, There is something which does not add up about the facts of your heart problems. What made your first doctor prescribe Coreg if he did not think you had symptoms of heart failure? Is the family history also of heart failure? Is it thought by cardiologist to be a genetic disorder? By the way, I am 35 and have CHF - well compensated right now, thought to be genetic. It would be highly irresponsible for a cardiologist to prescribe a drug meant for heart failure (Coreg) to someone who is completely free of symptoms and with completely normal test results. I mean, how do the doctors know you are carrying a defective gene?
     So a little time passes and your condition starts to worsen. It seems implied that the Coreg (or other meds) brought on the heart failure. I have no idea if this is possible. Assuming the meds did not bring on the problem, it sounds possible that your first doctor noticed something which made him prescribe the Coreg. Have someone look at your file and make sure there is a clear answer why the first doctor made the initial decision.
     It is your life and you should have no questions in your mind about something as important as this. Was a simple chest x-ray performed anywhere along the way? Thanks, Scott Brown.

Mary Ann, May 22, 2005 - Hi, This is my first time posting but I have been reading this site for over a year. What a blessing it is. My son was a senior in college and decided to try out for the diving team at college. During his physical, the doctor noticed many PVCs and was in bigeminy rhythm. They sent him to the local hospital for a chest x-ray, echo and EKG. The echo showed an enlarged heart with an EF of about 20%. I received a call from the school to pick him up and get him to a cardiologist right away. Needless to say that was the longest 2 hour drive of my life.
     We found a good doctor who diagnosed him with IDCM. He is on Altace at 10 mg, Coreg at 37 mg and one baby aspirin. After about a year with not much improvement we decided to take him to Cleveland Clinic. There we saw a specialist in cardiomyopathy. He suggested that we see the EP doctor to determine if the bigeminy caused or contributed to the cardiomyopathy. They put him on amiodarone at 400 mg for a few weeks and then down to 200 mg once a day. If it showed improvement he would be a considered for an ablation. His EF has improved to 50% and his heart has returned to normal size.
     Our doctor here in town is not happy with him being on amiodarone and would like him off quickly but Cleveland Clinic doctors say to have him stay on it for about a year to get maximum benefits. His heart rate has been in the 50 range. He had been complaining of fatigue so we took him to his cardiologist here who said that is probably causing the fatigue. He doesn't want to step on their toes because it is Cleveland Clinic but thinks he should go off amiodarone (Cordarone).
     We are scheduled to go back to Cleveland in July. My son had no symptons on diagnosis. Does this mean a better prognosis for him? My whole life has changed. I am consumed by this and spend all my time reading your forum and any other info I can get. Please, anyone - any info would be appreciated.
     Also, I should mention that he is on 150 mg of CoQ10. Thanks for listening and my prayers are with all of you who are going through somewhat of the same. If I didn't have faith in the Lord, I don't know if I could have survived.

Sandy N's May 22 reply to Nancy L's May 22, 2005 - Hi Nancy, I'm so sorry your dad is going through so much. Although I have CHF myself, I found there is no way to know from one day to the next how you will feel. Your dad has been very fortunate over the years to have had good doctors to help him with his different heart troubles. He has been through a lot. Put your trust in the heart failure specialist he is seeing in Boston and keep your dad's spirits high. Remember to also take care of yourself in the process. Good luck to your dad and your family.

Sandy N's May 22 reply to Lowell P's May 20, 2005 - Hi Lowell, My doctor told me to "take my duretic each day like clockwork, no matter, don't stop taking it." What has your friend's doctor told him? That is what matters here.

Jon's May 22 reply to Lowell P's May 20, 2005 - Hi Lowell, When first diagnosed, most CHFers are told to take their diuretic daily. Howver, if taken when there is no edema or tendency toward having edema at all, diuretics make you really tired. They are used to treat sympoms. That means taking one every day if you don't need it does nothing to prolong or improve your life. For that reason, most "experienced" CHFers work with their doctors to make a system that works properly for them in their individual situation.
     My own CHF doc says to take them when I need them. When I need them is something he leaves up to me. I carefully monitor my weight and diet. Right now, I am taking 10 mg Demadex about every third day but that changes as my tendency to retain fluid changes - which it does. Your friend needs to work with his CHF doctor to figure out what signs this individual patient needs to watch for to take a diuretic and potassium pill.
     Some doctors assume that certain patient " personality types" won't properly monitor their own condition so they lay down strict guidelines for those patients. Other doctors think diuretics simply must be taken on a regular basis like ACE inhibitors and beta-blockers are taken so they tell all their patients that. Other doctors are more current and more flexible, so they try to educate their patients and see how it goes. For other patients, it is obvious to their doctor that they currently need to take a diuretic every day, so they say so. Different instructions depending on lots of factors here. Jon.

Valerie R, May 23, 2005 - Hi, Just in case someone may not know, do not drink herbal tea when it can be avoided and most certainly avoid green tea.
Jon's note: For what it's worth, I don't know of any reason to avoid decaf tea or coffee.

Lowell P's May 23 reply to Jon's May 22, 2005 - Hi Jon, Thanks for the reply. I'm going to discuss this with my doc as I think too many diuretics may cause kidney problems. I hope you get a decent job soon. I will put another check in the mail soon also. My wife said to me yesterday, "How long since you've sent some money to Jon?" So you have an ally with my wife too as she knows how much I watch this site. Warm regards to you and your family. Lowell.

Jon's May 23 reply to Lowell P's May 23, 2005 - Hi Lowell, Thanks - especially since I no longer have a job. Friday morning at work I began to have serious lightheadedness, along with severe mental dullness, probably due to low blood pressure judging by my body's reactions. It got to the point that I could no longer visualize the proper way to set up a machine for a certain kind of metal extrusion. I went in this morning at start time (6 AM) and talked to the supervisor who hired me. He was very understanding, and wants to hear back from me as soon as I see my CHF doc, with a possible return to work if a meds change can get me going again. I e-mailed back and forth with my doc yesterday and will try to see him today.
     This appears to be heart failure returning rather than a meds problem. My CHF doc is very sharp and I want his opinions very much so I am not making any plans until he examines me and we discuss it. It's a drag because I believe I could have learned enough skill sets at this job to eventually make decent money down the road. I certainly have the machining experience.
     Anyway, for now I am once again totally dependent on my wife's income and donations. On the plus side, God has used my heart failure to help a lot of people over the years. Maybe He's just reminding me how all of you feel having symptoms all the time, in case I forgot after I improved. <g> After a decade of heart failure, I remembered after just a day or two how to slow waaaay down and change the way I do just about everything to prevent major problems. Life can just keep throwing change-ups at us, can't it? ;-) Jon.

Mikey S, May 23, 2005 - Hi all, Regarding my 5/15 post about caffeine, I try to use as little caffiene as possible to accomplish what I need to get done. I just drink tea because it feels like it has the right amount for my needs. Coffee feels like its trying to push me harder than I am capable of responding to. For example, I just completed 3 years in college with a 3.95 GPA. (Not as good as Jon's remarkable daughter!) Without the help of a few cups of tea per day I would have failed all my subjects. Anyway, thanks to everyone who responded.
     On another subject, Jon, can you tell me what actually happens to the heart cells with DCM? Is there irreversible dammage to the cells? My cardiologist only describes it as "global damage."

Jon's May 23 reply to Mikey S' May 23, 2005 - Hi Mikey, You're at a summe cum laude GPA now just like my daughter. Any university using a 4 as the highest GPA will graduate you summe cum laude at about 3.8 or higher, magna cum laude at roughly 3.6 and cum laude at roughly 3.3 GPA. You're on the ball, dude. She did it with double majors instead of the usual one major with a minor but you are waaaay up there!
     I have a thing for Diet Coke myself, so I'm not innocent in the caffeine crime department myself. <g> About the term "global damage," your doctor probably means that you have some damage in multiple areas of your heart instead of in just one chamber or that all your heart's chambers are functioning at less than normal function whether or not they all suffered structural damage.
     DCM is tough to call on cell damage because what is true for one CHFer may not be true for the next. I was class 4 with an extremely enlarged heart when diagnosed with IDCM. Now I am class 2 (was class one until last week) and my last echo showed my heart only slightly enlarged. Now, did my heart's cells suffer damage? Obviously, judging from my heart size when diagnosed. However, it doesn't seem to have been complete and permanent damage, judging from my improvement since 1994. The thing to remember is that heart failure is never just about the heart and its function. Many body-wide systems are affected, some most likely permanently. That's why The Manual is so extensive.
     So it's individual how much recovery your heart can make, and how well you will feel when the recovery occurs. I honestly believe that - especially with IDCM - following the steps laid out in The Manual will tremendously improve your chances of improving, and improving a lot. :-) Jon.

Marian V's May 23 reply to Valerie R's May 23, 2005 - Hi Valerie, Could you be a bit more specific with the warning to avoid all herbal tea? We have grown mint in our garden forever and I even dry the leaves for winter use. My husband and I drink it at supper because there's no caffeine in it. We also drink lemon balm tea and bergamont from our garden. I have heard and read that green tea wis supposed to be really good for you, but have not yet heard of a downside but we prefer the herbal to the mint and also flavored teas like orange, mixed berry, etc. I make sun tea using a 1/2 gallon jar, then cooling it. We also enjoy Wyler's lemonade powder. Is that dangerous too? We grew up never questioning the safety of tea or coffee although we've learned about the dangers of caffeine. It's a strange new world. Thanks for your input.

Clara D's May 23 reply to Valerie R's May 23, 2005 - Hi Valerie, Why not drink herbal tea or green tea? What have you heard? Clara D.

Anita S, May 24, 2005 - Hello, If it is okay with Jon, I would like to remind everyone to donate to Jon's site so he can keep it operating. Five dollars per person a month isn't asking too much to have access to all the information on this site. Those of us who can afford a little more can cover for those who can't spare the five dollars. A lot of us have been in that financial bind in the beginning.
     My husband has had CHF for 11 years now, and without the information on this site, we wouldn't have known what to ask the doctors. Thank you Jon, for being here for all of us who need you. Take care, Anita.
Jon's note: Hey Anita, If he doesn't mind, drop me an e-mail update on Phil. Talk about someone walking a hard road for a long time!

Peter S, May 24, 2005 - Hi Jon, Further to Charles W's observation of 5/20 and your reply, I wonder if there is some way you could leverage your writing skills and translate your heart failure knowledge into some kind of book such as a "Layman to Layman: What you need to know about heart failure and what your doctor may not tell you" sort of thing. Obviously it is tremendously difficult to get published and one really needs an agent but you have the respect of a number of cardiologists (including the published Dr. Silver who recommends your web site in his book) who might help. You could perhaps also isolate part of your web site for preferred members who pay an annual access fee, or link your web site to pharmaceutical or medical device company while making it clear you don't necessarily endorse their product.
     You have considered all of this I am sure, and I suspect you have been always just short of the financial reserve necessary to take a leap in a new direction. All the more reason for your loyal followers to keep kicking in donations.

Jon's May 24 reply to Peter S' May 24, 2005 - Hi Peter, As you suspected, these options have been considered. The bottom line is that this web site is my "book" (and my cook book); Jesus didn't kick me in the butt so I'd do the site for paying members only; and any visible sponsorship is an endorsement in many people's minds no matter how clear the disclaimers.
     Frankly, GlaxoSmithKline (Coreg's maker), Medtronic and other device manufacturers, as well as doctors, and health care providers and insurers who pass out our materials to their patients should all donate since they materially benefit from what we put online. If anyone wants to try an e-mail/reader-driven campaign to such organizations asking for a single substantial annual donation to, Inc., I can set up a web page, automatic message board, blog, or whatever you need - if you are serious about it. We are very "official" as stated at
     I have been down many roads looking for funding and haven't found it. A national talk show appearance might turn up a donor but I am too much the "religious conservative" to ever make it onto such a show. <g> The site would no longer be online at all without reader donations since we are in the same boat as many of our readers right now with our family funds barely paying our bills - literally.
     So to all who donate, a huge thank you! To those who can't afford to donate, keep reading and don't worry about it! To those who could donate but don't and who benefit from the site, well, phooie! <lol> Jon.

Tunny G's May 24 reply to Mary Ann's May 22, 2005 - Hi Mary Ann, Concerning amiodarone (Cordarone), my experience was a short one with this medicine due to reading the side effects. My EP doc suggested I take a shot at this (as he put it) to see if it would help me. I had my prescription filled and search the Net (Jon's Place) and decided I was not going to take this medicine. It has some serious side effects. My pharmacist says he thinks it will be taken off the market before the end of the year. I did not take any of it. The drug may be good for some but not for others. I hope your son continues to do well, as it seems his improvements have been tremendously wonderful.

Susan A, May 24, 2005 - Hi All, There are lots of posts to read through. I am sending postive thoughts and prayers to all. Jon, I am sorry to hear that you have not been feeling well and are still dealing with work issues. Me too. I am still reassigned at work and the stress from management is starting to take its toll. I am not sure what God has in mind but what I do know is that God will provide. Someone once told me that if you want to make God smile, tell God your plans.
     Does anyone out there deal with sleep disorders? I had a sleep oximeter test about a month ago and it shows my oxygen level is often below 90%. So now I am on oxygen at night and scheduled for a sleep study. Does this go along with dilated cardiomyopathy and CHF? What have others experienced? Susan A.

Larry, May 24, 2005 - Hello, I am new to this board but find it interesting. I too have CHF with an EF at 16%, enlarged heart, cardiomyopathy, 2 stents and recently in December I had an ICD implanted. I'm only 35 years old and I am also going though my first round of SSD formalities. Thank goodness I have long-term disability insurance. I don't see how people can survive the first 6 months without income.
     Just recently my ICD went off while I was mowing the yard. I've got to tell you, it was a wallop. They said it used a 36 joule hit to get my heart stopped so it could start going correctly again. Does anyone know what that equates to in volts?

Jon, May 24, 2005 - Hi everyone, I saw my CHF doc today. Nothing turned up on the physical exam. I had to postpone all the tests so I could have them done at specific medical centers to save money. My blood work is tomorrow and my echo probably the day after. I'll let you know how they go. Also hallelujah, his main medical center is finally building more parking! Jon.

Mikey S, May 25, 2005 - Hi all. First Jon, I want to wish you the best in your work situation. You are inspiring me with your courage and determination. I am looking for a job myself after rehabing for 3 years. Things are slow in my field at this time but since it's a sit-down computer job I'm not afraid that I can't handle it physically.
     I also want to mention that I have been emulating you by resuming my weightlifting. Prior to CHF I had lifted weights regularly for 15+ years. The illness took my hobby, my life style and my physique. When I started to rehab myself I included some light lifting in my routine but as I continued to increase the frequency, intensity and duration of my running, the lifting went by the wayside. I have now been lifting for about a month and I'm starting to feel comfortable with making it a permanent addition.

Neal M, May 25, 2005 - Hi, I have been coming to the web site on and off for a number of years and it was a great help to me when I first started having my heart problems and trying to come to terms with what was happening. Some background on myself: I am only 49 years of age and live in Queensland, Australia. I work full time, although at about lunch time I hit a wall and start to go downhill. I am writing this while waiting for my wife to pick me up. I was first diagnosed with dilated cardiomyopathy in December of 2001 with an EF of 15 to 20%, which had improved to 35 to 40% and is now back to around 30 to 35% at the time of my last echo in January of 2005. I am on all the normal drugs: Aldactone, Lasix, digoxin, Gopten (trandolapril), Dilatrend (carvedilol or Coreg) and now Atacand (candesartan).
     An Medtronic DR7274 ICD (yes one of the "recalls") was first implanted in August of 2003. I have had a number of recent episodes in February and March of 2005 (shocks and blacking out, etc.) that are now being controlled by new anti-arrhythmic medication (Cordarone) and hence the no driving. I see the electrocardiologist again on Thursday 26th May.
     I had a follow-up visit with my cardiologist on Monday 16th May and although he was reasonably happy with my progress on the new and additional medication, he did ask what would happen if he said that I could no longer work. How would I cope emotionally and financially if I had to give up work through ill heath? His comments did throw me somewhat at the time and I am now trying to find out as much information as I can. I have approached both my Super Fund and Centrelink Australia but their guidelines appear a little vague - something along the lines of "is unlikely, because of the ill-health, ever again to engage in gainful employment for which the member is reasonably qualified by education, training or experience."
     I was wondering if anyone here has had any experiences in dealing with Centrelink and the Disability Support Pension scheme in Australia. Thank you for all your guidance. Regards, Neal M.

Debbie T, May 25, 2005 - Hi Jon and others, It seems you have had several times where you have worked and then not worked. Has there been a pattern for you as to how long you are able to work before CHF throws you back off working? I ask this because the past year has been a real problem for me with my first hospital stay for CHF in September, then October for 5 days with complications from a pacemaker/ICD that was implanted then. At the end of November I had the worst CHF I've had with even the lung specialist and the cardiologist arguing as to which was my problem. I had every test in the book and think that it was CHF and lungs had fluid in and outside of them as well.
     During this time from August when it first started through January, I didn't work at all, then tried and was down again, and finally realized the stress wasn't going to allow me to work so I was off for 2 months. I tried again for only part-time 10 hours a week and even that put me with problems. I have since stopped working and started the process for SSD. Is there an estimated time between major CHF setbacks where you can't work? So far I'm guessing stress makes things difficult. Thank you so listening and hopefully giving me some thoughts on this.

Jon's May 25 reply to Debbie T's May 25, 2005 - Hi Debbie, This is just y own experience and may not be similar to anyone else's. I went 7 weeks at my first light industrial job this year, but only lasted 3 days at my second such job. Both only required light lifting but both required constant - and I mean constant - motion. Jon.

Steve H's May 25 reply to Mary Ann's May 22, 2005 - Hi, I also was concerned about taking amiodarone and the side effects. After being on it for a year and a half I had improved so much my cardiologist and me decided to take me off it. I had some of the minor side effects so was very worried about it.
     Six weeks after I went off it I went back into a-fib and stayed in the hospital a few days to get my amiodarone levels back up. It worked like a charm and I was back home on it again. I decided the side effects that I have had so far are worth it. If I stopped taking my meds because of the possible side effects I would be dead by now. You have to decide is it better to chance the side effects or suffer the effects of not taking the drug. Steve.

Linda B, May 25, 2005 - Hi everyone, I understand that diastolic CHF is from the heart's inability to relax. How does this inability to relax show on an EKG? Does it involve the T wave or ST segment?

Jennifer G's May 25 reply to Susan A's May 24, 2005 - Hi Susan, I went through a sleep study also because according to my cardiologist, sleep apnea can be a cause of cardiomyopathy. He wanted me to go through the study to either name sleep apnea as the cause of my cardiomyopathy, or rule it out as the cause. He thought that so many doctors rush to treating the symptoms but spend very little time trying to determine if there is a treatable condition that caused the extra workload on the heart in the first place.
     My results showed mild apnea. I never had episodes where I stopped breathing, but woke up an average of 30 times an hour with breathing difficulties if I was on my back - no wonder I was so tired! When on my side, I rarely woke up due to breathing problems. My apnea is not considered severe enough to have caused my cardiomyopathy and was therefore ruled out, especially since I usually sleep on my side or stomach. You can't sleep on your stomach during the test because of all the little sensors that are attached to you for the readings. Jennifer G.

Sandy N's May 25 reply to Susan A's May 24, 2005 - Hi Susan, Like you, I have cardiomyopathy and CHF. I did have a sleep study. My doctor, (pulmologist, sleep disorder) gave me a CPAP. I hate to say it but I don't like the thing much. I've used it for a few months now. Each time, I wake in the morning and find that I'm taking it off in my sleep and tossing it, then finding it in various places around the room. I have had different masks and each bothers me during sleep. Although so many people use it and have no trouble with it, I just can't seem to, but I'm not giving up and will continue to try! Good luck to you!

Gene G's May 25 reply to Sandy N's May 25, 2005 - Hi Sandy (and Susan), Since my post here last year on various techniques to get used to - and tolerate - a CPAP (see ), I have been changed from a continuous pressure device (CPAP) to a newer BiPap sleep apnea machine. The BiPap differs from the CPAP in that the air pressure delivered is not a constant airflow/pressure but rather an alternating air pressure, so the pressure is reduced a bit when you exhale. This makes it much easier to get used to and to keep on.
     Regarding comfortable masks, I now at last have found a very comfortable one, made by Respironics (the mask I mention in my earlier post was not comfortable at all and leaked a lot). See Together, the BiPap and new mask make it much easier to fall asleep and stay asleep. I hope this helps. Gene.

Barb N's May 25 reply to Sandy N's May 25, 2005 - Hi Sandy, CPAP does take getting used to but I have found a remarkable difference in stamina since starting. Before you give up, you might see if your pulmonologist will prescribe a BiPap or c-flex type device. The BiPap is a fixed pressure inhalation and a lower fixed pressure exhalation. A lot of the "mask" discomfort I think is actually the discomfort of exhaling against a fixed high pressure, which also means the straps have to be tighter to prevent leaks. C-flex is similar to BiPap but the patient has some control over the setting of the exhalation pressure.
     Insurance typically won't reimburse the difference between this type of machine and a typical CPAP, but to me it (the C-flex) made a huge difference in how much time a night I could use it. Most studies say over 4 hours per night gives significant benefits (I usually lose my mask at between 4 and 5 hours). There is also an auto-adjusting type of machine that moderates the inhalation pressure to correspond to what the machine senses is needed. I have read that this is not recommended for CHFers but have not yet found out why.
     The mask I like is a new (April this year) Respironics one called "comfort curve." It holds a pillow (not prongs) under and against the nose with just cheek pads and a single strap around the back of the head so you really lose the Darth Vader effect and the pressure points that all the other masks seem to give. You do have to be able to sleep with your mouth closed to use this one, and it won't work if you have a cold. But - joy - with a bit of practice you can side sleep!

Gena G, May 25, 2005 - Hello everyone, I posted a couple of months back about my husband. He was diagnosed with CHF in March, 2005. He had an EF of 15% with 3 of 4 valves leaking, an enlarged heart, and fluid in his lungs. He was put on Coreg at 6.5mg twice a day (I think that's right), Micardis HCT, and Lexapro. On our next visit to the cardiologist he increased his Coreg to 12.5mg twice a day. His blood pressure was still a little high. My husband has felt great. He went back to work after about 3 weeks mainly because his blood pressure was so high (250/150). Since it was so high and he was trying to get used to his meds we decided to have him take off work for awhile. He still feels great.
     My question is, recently (last 2 weeks) he has gained about 10 lbs and isn't urinating at night like he was before. Could this be a problem? However, his appetite has increased dramatically since getting all the fluid off and he is working in 100 degree heat. He drinks a lot of fluids, mainly decaf tea and water. Working in that kind of heat he has to do so in order to stay hydrated. He takes his blood pressure meds at night because it made him sick to his stomach when he first started taking it and the blood pressure pill has the diuretic in it. Thanks, Gena.

Joyce, May 26, 2005 - Hello all, I don't know about other caregivers but the hardest part for me in understanding this terrible illness is how one minute the person appears to be at death's door, looking and feeling that way. My husband has even said his heart is tired. Then the next minute they seem to be full of pep and energy. It is any more that I don't know when I should really be concerned. I just have to rely on my husband to use his good sense to know when he should go to the hospital. This is such a hard illnes on everyone touched by it.

Wayne, May 27, 2005 - Hi Jon, I have read numerous suggestions about different means of funding, but one that I have not seen is for each of us to ask that upon our death we have prearranged for memorials to be sent to, just as others do for disease research foundations, etc. I have already asked my wife to do so.
     It is a hard fact that many of us will not be staying around as long as we would like. So why not take that and make it into whatever goodness is within our power? We can use this disease that takes so much from us in life as a means of preserving a precious resource when we are gone. If anyone out there likes this idea, I suggest that you make sure that your loved ones know the address and other pertinent information, like the fact that any contribution is fully tax deductible in the USA.
     I plan to write a short explanation of what this site means and have it for a handout to my friends and relatives. They cannot understand what they do not know. If anyone can expand or improve this idea, please, please do so. Thanks, Wayne.

Tom S, May 27, 2005 - Hi everyone, Anger was all I could feel the first time I posted to this board and I remember Jon picking it out and basically telling me to get mellow. I did, pretty fast I might add, and have managed to survive for the past ten years without too many episodes (five) in the hospital. Ever since my first post - and I can't remember when that was - but it had to have been nearly a decade ago - I have followed this forum and the people who post to it and very often want to respond, but then think back to my own situation and realize that anything I say would probably be meaningless.
     I get the sense that many first-timers are looking for that miracle cure or someone to tell them about some miracle drug that will reverse their CHF but guess what - there isn't any short of a transplant and that is pretty drastic. In fact, I have outlived most people (three so far) I knew who had transplants about the same time I had my first CHF episode that nearly killed me. I also witnesssed firsthand what they had to go through and am witnessing the after effects on a fourth transplant recipient who is a close friend of mine. Believe me when I say this, I believe I had a better quality and quantity of life not going the transplant route when I was offered the opportunity.
     I can see Jon pulling his hair out at the suggestion that transplant isn't viable for folks but frankly all I have ever seen were downsides to it, including the incredible cost of drugs and the followup procedures, dietary and activity restrictions, and drug reactions, and other conditions which varied from cancer to spontaneously broken bones.
     Jon opted to go the work route. I didn't. My work involves my children and being Mr. Mom. My wife stepped up to the plate and is batting 1,000. As Jon would say, the Lord does provide, and He has done it and done it in spades for us. We have a wonderful church family and my work involves helping anywhere I can. In fact, I have wound up in the hospital four times for extended stays because I was simply doing too much church and Mr. Mom stuff.
     Now I am pretty much in end-stage CHF and with an unmeasureable EF (guestimated at 5% to 10%) I am really taking it easy. I still do an occasional project for the church but most of my emphasis is preparing my wife and kids for my death. Losing a key member of a family is never easy and I see it in their eyes when we talk about it, but hopefully talking and preparing for that eventuality will soften the final blow when it comes. I constantly try to inject humor into it and I honestly have no fears of it at all. I fear mostly for my children and wife but somehow I know the Lord will provide and they will survive, and probably thrive.
     So I guess this post to the forum is to tell the newbies, and some of the longer standing members of the forum, to take it easy and follow your doctor's advice, and don't try to do too much. Most of us are not firing on all cylinders so admit it and take it easy. Life can be long and enjoyable if you just first accept your condition, then learn to live with it without fighting it. With sincerest best regards and kind wishes to all, Tom.

Mary D, May 27, 2005 - Hi all, I just need a little info. I posted before that I had CHF, dilated cardiomyopathy and a dual chamber pacemaker. Well, I went to the doctor Tuesday and she told me that since I had not improved very much she thinks I would benefit from a biventricular pacemaker with ICD.
     My question is, can you feel the shock when the defibrillator goes off? My doc (cardiologist) is refering me to to another cardiologist because she doesn't do the ICD thing. That appointment is July 18th, so I guess the new pacemaker will go in shortly after that. Anyway, long-term disability, here we come! Thanks for any info anybody can give me. I have had a dual chamber pacemaker for 3-1/2 years, and was just wondering how this one will do. Mary.

Sandy N's May 27 reply to Barb N's May 25, 2005 - Thanks so much Barb, for that info. I will speak to my doctor and ask for the Comfort Curv mask. By the way, I do have the C-flex, not the CPAP. You're right about the insurance not wanting to pay for the flex. I'm in negotiations right now with them.

Valerie R, May 27, 2005 - Hello everyone, I'm sorry I was not more clear about green tea and herbal teas, and I have been offline for awhile. I meant that you should avoid them if you take Coumadin. I have a booklet given to me by one of my doctors about Coumadin. It says, "In general, you should stay away from excessive amounts of foods high in vitamin K, such as green and leafy vegetables. You may also want to avoid all herbal teas (especially grean teas)." The booklet also gives a Vitamin K chart. Coffee, for example, has 91 mcg per 8 oz but green tea has 1709 for 8 oz. It doesn't give any other herbal teas. If you've been having something for a long time, I guess it's okay but if you take a large amound of K (I did when I started drinking Boost and didn't think about it), it can cause problems.

Susan A, May 27, 2005 - Hi everyone, Tom, My husband, who worked as a cardiovascular intensive care nurse for 16 years, echos your view on heart transplants. He tells me it is a long and difficult road, one he thinks he would not travel. My cardiologist has said I will need to be worked up for a transplant if my heart declines much more. I'm not sure what I would do if faced with needing a transplant. I am thankful for your wisdom and sharing about your situation. What a gift you are giving to your family, to be able to talk with them and prepare together for your passing over. God's peace be with you.
     Wayne: Memorials to the site. What an excellent idea! I am going to be sure my husband knows that it is my wish for memorials to be dedicated to the site. Jennifer, Sandy, and Gene, Thanks for the feedback regarding sleep studies. I think it is important that those of you out there with CHF consider the connection between sleep disorders and your heart condition. I've been doing some reading about the subject and I am finding it is much more common in CHFers than I ever realized. It seems like the hard research regarding, however, is lacking in this area. All of you take good care! Susan A.

Gino T's May 27 reply to Mary Ann's May 22, 2005 - Dear Mary Ann, Next July I will celebrate my 20th anniversary since earning my degree in Medicine. During this period one of the most biggest mysteries to me in dealing with my colleagues is relative to some behaviours like you are experiencing. I do not understand, for example, why your cardiologist and those at Cleveland Clinic do not "speak to each other" to debate and discuss the case of your son. In my opinion, they should have done this.
     Your cardiologist should clearly explain why he would stop a therapy that apparently has had smart results. He might also be right (personally I do not know your case) but I do not like such kinds of doctors - with these stupid attitudes they cause anxiety and frustation in their patients and sometimes do damage. Just yesterday I have experienced a situation like yours. An out-resident worker who came into our hospital for Prinzmetal angina went back home to another cardiologist, who changed the therapy. Yesterday he had a cardiac arrest (ventricular fibrillation secondary to a new ischemic attack) with a high probability of permanent brain damage. The tragedy is that this patient is 38 years old.
     At this time I do not have sufficient clinical data to express an opinion about the case of your son. What I want to say however, is that since I began to "deal with" CHF patients 10 years ago here in Italy, I have always considered Cleveland Clinic one of the outstanding centers for CHF care in the world. If you need/want further my opinion please, contact me privately at my e-mail address. Good luck.

Roger H's May 27 reply to Susan A's May 24, 2005 - Hi, I was diagnosed with sleep apnea in 1999 and in the first study they did I stopped breathing an average of 45 times per hour. I just about got fired - crashed a machine twice in one week. After one year, down to 16, and the last one was last November and I had none with a BiPap machine. It took about a month to get adjusted to sleeping with the machine, but it definitely helps!
     I'd also like to respond to Lowell's post on May 20 that my doctor said I know my body better than anyone and I went 14 weeks without a Lasix. This is taking in 300mg of sodium per day. My blood tests show sodium on the low side but the doctor said this is okay for me.

Julia P, May 27, 2005 - Hi, This is such a resourceful web site. Does anyone know anything about Coreg and pregnancy? How does Coreg affect the development of the fetus? I am interested in having another child. My EF is about 40%. I just wonder if anybody went through the same thing and what the outcome was. Thanks.

Barb N's May 27 reply to Sandy N's May 27, 2005 - Hi Sandy and other CPAP users, There is a good site a with message board about CPAP at This provides reviews of new equipment. The message board also provides a lot of suggestions and fixes for problems, such as that with the comfort curve mask, one frequently has to use a bit of plumber's tape in the elbow joints to stop leaks.
     There is also a lot of information for the proactive patients among us - and I know there are a lot on this site - who are interested in understanding their own sleep records. Some types of machines let you download information about your sleep pattern, episodes of hypopnea, apnea, leaks, etc. This is useful information even when working with a sleep center, but even more so if working with your regular doctor.

Sandy N's May 28 reply to Mary D's May 27, 2005 - Hi Mary, I wanted to wish you luck with your new, upcoming ICD/pacemaker. I have had mine since December of 2004. So far no zaps. Like you, I was a bit nervous the first month but have almost forgotten it's implanted in my chest! Like you, one day I'll find out how it feels but I wanted you to know that I am now very much at ease. Just knowing that when I need them, the 911 paramedics will be out there battling the traffic to get to me and I have my very own in my chest, zapping me back to life. Wishing you the best.

Tunny G's May 28 reply to Barb N's May 27, 2005 - Hi Barb, Thanks for the info on the Cpap site ( I recently had my headgear replaced after realizing (2 years) that it was leaking. The new one, without any leaks, makes such a difference in being able to sleep! These things happen gradually and you don't realize it. I should have replaced my headgear a long time ago. I will look at this in the future so it doesn't happen again.
     Note to Jon, thanks for this site Jon, I have no money but someone else will have to wait as we all have to do the best we can to keep this site going. Looking back, what would I have done without this site? Others should think about the same and really do the best possible to send even the smallest amount as it all adds up and could save this site. God bless you.
Jon's note: Thanks Tunny. However, to all those who really can't afford to donate, don't!. This site doesn't exist to milk dollars from those who are struggling - really. To those who can donate, of course, please do!

Diana W, May 28, 2005 - Hi , My father just came back from a trip and is having CHF. His doctor had recommeneded a ECC, which is a 7-week program where therapy is applied to blood to pump heart. Can't find any info on this. My dad is 85. Thank you.
Jon's note: Do you mean EECP? See

El Requa's May 28 reply to Mary D's May 27, 2005 - Hi, Can you feel the shock when the defibrillator goes off? To answer your question, yes! - very much so. I recently received a BiV pacer. Actually, I have had it for a year but only recently got the 3rd lead hooked to my left ventricle. I am now seeing improvement. My labs indicate that my level of heart failure has improved significantly. I feel like I have more energy. I am exercising daily and finding it easier. My doctor tells me that in some patients they are finding the benefits to be much better than originally anticipated with CRT pacers.

Scott Brown's May 28 reply to Gina's May 25, 2005 - Hi Gina, It is not a good sign that your husband has put on 10 pounds in a short amount of time. He should be on a fluid restriction and a duiretic. It is fine that he needs more fluid for outside work, but obviously he is retaining fluid now. Perhaps he needs more diuretic. Retaining fluid is eventually going to make it harder to breathe. I exercise strenuously on a regular basis and I increase my fluid intake but this does not replace my diuretic. Personally, I find that sweating does not remove fluid from my lungs and abdomen like a diuretic can do.
     A CHF specialist would tell your husband to weigh himself daily. A two-pound gain is significant. Ten pounds is too much is a short time. I would suggest you work out with your cardiologist to :
Determine a baseline for your husband's weight (normal), define proper daily fluid intake according to his situation, and define actions which need to be taken when his weight goes up. Best of luck. Scott Brown.

Lori K, May 28, 2005 - Hi, I have not been on the board in awhile but Jon, I really hope your symptoms end up being nothing more than you can handle easily, first and foremost. I have had DCM for 4 years with a stable EF in the high 40s. I am 46. A year ago my CHF doc switched me from Zebeta to Coreg, raised my dose to 12.5mg BID and has held me there due to my asthma.
     On my echo a few weeks ago, it showed my LVIDd was 5.54 compared to 4.9 a year ago, however my EF jumped to 64% from 48. My Vo2max was 21.5 compared to 24.4, four years ago. I went on the treadmill 15 minutes on a full Bruce protocol compared to 9.6 the first time but my Vo2max was lower. Does anyone understand how the heart can enlarge while the EF is rising? I guess I expected them to both be up or down together. I wondered if anyone has had this happen? Thanks, Lori.

Christine Schultheis, May 28, 2005 - Hi, I work for bioStrategies Group, a consulting firm in Chicago and we are currently seeking CHF patients to participate in a 30-minutue interview regarding their current CHF treatment. No personal or identifying information will be used in this study, all participation is anonymous and your identity will be kept confidential. To qualify for this study you need to meet the following criteria:

The phone interview will take approximately 30 minutes. For your time, we offer a 50 dollar US honorarium. If you are interested in contributing your experience, please contact me directly at 1-800-433-4579 extension 236 or 312-628-1078. All responses will be kept confidential and information is used only for this study. Thank you.
Jon's note: No endorsement or research into this here, just posting the offer.

Robert M, May 30, 2005 - Hi, While trying to take Coreg, then Toprol-XL, I became suicidal. I ended up in the psych wing of the hospital. I already take antidepressant meds for depression and PTSD. I wonder if I am alone with such a severe depression illness. My cardiologist now realizes I cannot take these meds. Thank you.

Louie K, May 31, 2005 - Hi, Regarding the post asking for CHF patients to interview, this would be a good way to provide some money for this site. Just answer their questions and ask them to send the $50 directly to Jon. Just a thought.

Robert G, May 31, 2005 - Hello, I had a quadruple bypass a couple of years ago and now have trouble with my ankles swelling. Does anyone know what I can do to relieve this situation? Thanks, Bob.

Scott Brown's May 31 reply to Lori K's May 28, 2005 - Hi Lori, I was a little confused by your question because you were talking about a lower Vo2max score, then you asked the question about how your heart can continue to become larger while EF improves. From Jon's board, "Vo2max is the point at which your body cannot increase its intake of oxygen despite an increase in exercise intensity." I'm not sure this has a direct relationship to heart size at all.
     The question you asked about ejection fraction (EF) is an interesting one. Keep in mind the EF is the percentage of blood which is pumped out of the heart's main chamber each time it beats (normal is approximately 55%). A person with a heart which is twice as big as a normal heart only needs half as much blood to leave the heart in order to pump the same blood volume - for example, 50% of one pint is the same as 25% of two pints.
     As you can see from the example, the amount of blood exiting the heart each beat does not necessarily have a direct relationship to the actual size of the heart. In actual fact, an enlarged heart is very normal (and beneficial) for highly trained athletes. The problem for CHF patients is that the enlargement continues beyond the beneficial stage and the benefit becomes a liability as the heart becomes more inefficient.
     My EF has been tracking at approximately 23% for 5 years. I still notice the CHF symptoms (water retention, dizziness when bending, tiredness, shortness of breath) but I have adjusted, and function pretty well at this point. Best of luck, Scott Brown.

Krista L's May 31 reply to Mary D's May 27, 2005 - Hi Mary, In response to your question of whether or not you can feel the shock, the answer is yes, if you are awake to feel it. The first time my ICD shocked me it was double counting, so it thought my heart was beating faster than it actually was. It felt like a swift and hard kick to the chest but I would not describe it as particularly painful. The second time I did not feel it since I had fainted after going into ventricular tachycardia so that ICD certainly saved my life.
     I too had a biventricular pacemaker and it helped me for a short period, but unfortunately my heart health continued to go downhill and I ended up requiring a transplant, which I received a little over four years ago. My transplant nurse even managed to recover my ICD/pacemaker, affectionately nicknamed Sparky, after the transplant, since it had saved my life. Good luck to you! Krista.

Mervyn Johns, May 31, 2005 - Hello, I have only just been diagnosed with CHF formally on 26 April. I am 59 and have had a history of chest infections and in February had a bout pneumonia. My PCP first diagnosed me as an asthma sufferer and put me on inhalers which gave me no respite at all. For about 8 months the only sleep I got was from sleeping in an armchair. On my first visit to the cardiologist he doubled up my beta-blocker and diuretic so that I am taking 2.5mg Cardicor, 5mg Ramipril, and 80mg furosemide. I have been taking these since 27 May and my coughing has gotten so bad I am getting no respite from it.
     I have another infection and have been put on co-amoxiclav 375mg twice a day. In an effort to achieve some improvement I am taking all the above and getting no better. I am back at the clinic on 4th June and frankly I am wondering if I am ever going to get relief from the cough and loss of appetite. I have been told to lose weight, which should not be a problem as I cannot manage to eat much. I have been told to drop my fluid intake to 1-1/2 litres a day, which for me is a big drop in what I used to drink but I am trying my best to follow the doctors' advices. I am however at the moment wondering if any of them know what they are doing.
     Any feedback would be much appreciated and if you tell me how I can make donations to your site from Glasgow, Scotland I will be only too happy to contribute.

Jon's May 31 reply to Mervyn Johns' May 31, 2005 - Hi Mervyn, I'm not sure what is causing your cough, whether infection, heart failure or what. However, since serious cough can be a side effect of ACE inhibitors, I would suggest having your cardiologist take you off Ramipril to see if your cough improves. If it is the ACE inhibitor, you can try taking an ARB or hydralazine plus isosorbide dinitrate. While off the ACE inhibitor, he could raise your dose of bisoprolol to target dose (10mg) to offset lack of an ACE inhibitor. I'm not positive but I believe you can donate by clicking the "Make a Donation" button at the top of this page. That system accepts several different currencies, converting them to dollars automatically when depositing them for us.
     To everyone, I added some pages to Kitchen Corner today. They may or may not help but take a look through the links at if you're interested.
     Also, I am scheduled to give a presentation at a medical conference early next year to a roomful of doctors on a heart failure patient's perspective of things CHF-related. This is not for sure since all the conference funding has not yet been approved. If it happens, it would help for me to know the 3 most important messages you would like to have conveyed to CHF doctors about dealing with us as patients. Please think about it quite a bit before sending ideas to me. Use the contact form by clicking "Jon" at the end of this post.
     Finally, the conference planners would like another knowledgable CHFer to possibly sit in on a panel discussion at the least. They would like someone older than me so that between me and the other CHFer, we would be somewhat representative of CHFers in general. If you are interested, take note of the following:You would have to travel very early next year to Maryland for the conference, you need to be at least 60 years old, you need to be self-educated on heart failure to a reasonable extent, and you need to be assertive enough to face a roomful of doctors without being nasty about it. <g> If you fit the requirements and are interested, let me know. Travel expenses would be paid. Jon.

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

Talk to Jon Site Index