Ben B 6-1 condolences on Ginger's death
Lynda W 6-1 how often should an EKG be done?
Michael S' 6-1 reply to Scott B's 5-29 arrhythmia experience
Maryann H 6-1 should my son still take a baby aspirin?
Linda 6-3 does anyone have experience with fainting? (syncope)
Tom S 6-3 condolences for Ginger C
Cheryl C 6-3 seek support group experiences
Emil S 6-5 shakiness, alcohol, cigarettes
Mike L 6-5 is the doctor missing something?
Karen K's 6-5 reply to Lynda's 6-1 getting EKGs at cardiologist's
Margaret D's 6-5 reply to Lynda W's 6-1 getting EKGs at cardiologist's
Nancy K 6-5 seek info on contraindications' implications
Jon 6-7 update, donations
Ann L 6-7 donating
David Wilson's 6-7 reply to Emil S' 6-5 shakiness, alcohol, cigarettes
Sandy N's 6-7 reply to Emil S' 6-5 shakiness, alcohol, cigarettes
Jack D's 6-7 reply to Emil S' 6-5 shakiness, alcohol, cigarettes
Linda K 6-7 seek BiV info, plus tip on salsa
Hitendra G 6-7 seek advice on father's need for cath
Loretta D 6-7 questions on testing and Coreg dose
Jon's 6-7 reply to Loretta D's 6-7 testing and Coreg dose
Roger H 6-7 Hain eggless mayonnaise
Giorg 6-7 does anyone have left atrial enlargement?
Lowell P's 6-8 reply to Giorg's 6-7 heart enlargement
Joy K's 6-8 reply to Giorg's 6-7 heart enlargement
Jim C's 6-8 reply to Emil S' 6-5 coping
David Wilson 6-8 my pacemaker implant experience
Tom C 6-8 how many of us CHFers still work full-time?
Valerie R 6-8 chicken soup discovery
Ben B, June 1, 2006 - Hello, I wanted to express my condolences on the death of Ginger C. I did not know her well, but I remember she sent me a very nice e-mail when I first started posting here, and that we were diagnosed at about the same time, and she seemed to be doing well so it is quite a shock. I also remember she had it very tough with a lot of sad times in her life, and was always caring for one sick person or another, despite her own illness. email@example.com
Lynda W, June 1, 2006 - Hello all, I just would like to ask your opinion about a doctor's treatment. My husband went to see a cardiologist who lists his practice at this site. It was a second appointment. During the appointment, no EKG was done. The nurse explained that they performed an EKG once every 2 years. So since it was done on the initial appointment, my husband will have another one in 2 years. To me, this sounds pretty ridiculous. Could it be the right approach? What about the other doctors who list their practives at this site? firstname.lastname@example.org
Michael S' June 1 reply to Scott B's May 29, 2006 - Hi Scott, Thanks for the info. It is ventricular fibrillation that I have. The cardioversions were not one right after another. I received the first going into surgery (gallbladder) and the next one while waking up on the 10th of October, 2005 - one a month to the day with the next one 3 weeks, then again one week later. This took me through December.
My latest episodes were as follows: 3:00 PM April 21, then again at 5:00 PM. I had two the following day within an hour of each other and finally one the next day. The new ICD/pacemaker was put in so I could be paced atrially as my old one was a single lead into the ventricle. I was still strong until the day after surgery with no shortness of breath.
Now most days a 50-foot walk will bring on shortness of breath, while climbing one flight of stairs and I am shot for the rest of the day. My meds are 600mg amiodarone (increase), 80mg Valsartan, 6.25mg Coreg twice a day. The only other change is 1-1/2mg of lorazepam spread over 3 times a day. Previously I did 3 miles a day with no shortness of breath, could lift whatever my limit was, and bend over without dizziness. Michael S. email@example.com
Maryann H, June 1, 2006 - Hi Jon, What is your opinion on someone taking a baby aspirin who has an EF of 50 to 55%? My son, who is 24, had another echo (actually a stress echo) and everything was good. He has PVCs (trigimeny) but the doctor said they go away when exercising. His EF goes up to 65 to 70% when exercising and his heart rate went over 200. He managed to do almost 13 minutes. The doctor said that is a hard question when I asked him about the aspirin. He is one of those doctors who will say he isn't sure. He said to stop it but I am always afraid to stop something when he has come a long way and has taken aspirin from day one when he had an EF of 15%. Any info would be appreciated. firstname.lastname@example.org
Jon's note: Unless he has risk factors for stroke, I'd go with the doc's suggestion and stop the aspirin, but I'm not a doctor.
Linda, June 3, 2006 - Hi, This is my first visit to this forum. I passed out at work today, for the second time this year. I work around doctors and nurses who scared me into going to the emergency room. No luck finding what caused it. However, the nurse who treated me at work said I was out for 3 minutes with no vital signs. I wonder what is considered normal syncope? Are there normally no vital signs when someone passes out? I meant to ask at the emergency room. The nurse seemed to think that this was longer than normal.
I don't know how much I should pursue in finding out if there is something wrong as I've passed out several times in the last three years and had tons of tests and it just gets frustrating not knowing what it is. Has anyone else had this happen? I'm a 40 year old, healthy active woman. I do have a family history of heart issues. My father died at age 48 from a heart attack. email@example.com
Jon's note: Pursue with great vigor until you find the cause, no matter how frustrating it gets. This is no joke.
Tom S, June 3, 2006 - Hello everyone, It's hard to express the comradeship that one feels towards the people that post on this forum. For those of us who can't even remember how far back we started posting here it is like another family. Losing a member of that family is always a loss like that of a member of our own families, because we are all pulling for each other like the Little Engine That Could.We know we are all fighting an uphill battle and most of us treasure every day of extra life we are given.
Ginger C was one of our Little Engines That Could and to learn of her loss is heartfelt by each and every one of us who still are chugging along. My condolences to her family and our extended family here on the CHF forum. May she rest in peace after what we all know was a hard fought battle for life. firstname.lastname@example.org
Jon's note: I am not posting all the condolences for Ginger - there are too many. I read each one, though. The "Me Too" pages on this site were originally her idea and her project. I took them over when she became overloaded caring for others who were very ill. Ginger was one of the few who said not so much but did very much indeed. I respect her.
Cheryl C, June 3, 2006 - Hi Everybody, Some of you may remember that a couple of months ago I posted a note saying that I was going to be helping my cardiologist (and the group) set up a CHF patients support group. Well, we've had our first meeting and plans are under way for that to happen. I'll be starting the meetings out with a talk about low sodium eating, how important it is to our well being, and mostly importantly how to comply.
My question is, "Have any of you been involved in any way with any type of local support group?" If so, could you please e-mail me? I'd like some input on how other groups are put together, whether or not there is always a prearranged speaker or topic for the meetings, and how often the groups meet. This doesn't have to be a CHF group, it can be for diabetes, etc...
We'll be using a meeting room at one of the local hospitals and are trying to plan to insure the success and future of the group. Thanks in advance for any help you can give me. This is a great group of people! :-) Cheryl C. email@example.com
Emil S, June 5, 2006 - Well, I said "shakey" because it's hard to explain. As I sit here and type, my hands tremble slightly. It's not just my hands, I can feel it throughout my whole body, almost like a slight Parkinson's. I'm not your usual future transplant candidate. Every day I try to live as though I am a healthy 25 year old. Prime example: Memorial Day weekend I spent on the lake, swimming, floating and boating along, forgetting I'm sick; so much so that I tried to wakeboard. I couldn't get up and after 3 tries, there was no point in trying again. I was so exhausted. But for the chance of getting up and being on the board again, I was willing to wear myself past the point of exhaustion, and I did. To live my life, for seconds of time, as I did constantly before I became sick, I'm willing to trade for anything.
I self-medicate with alcohol and cigarettes. If I am feeling wiped out, I can drink a beer or two and gain some form of extra boost to do things I'm too tired or weak to do. As for the cigarettes, long before I was sick, they have always made me focus whenever a problem arises. Now, not only do they help me focus, they also give me a slight edge on my fatigue.
I know that both alcohol and cigarettes are bad for me but I also don't believe they will kill me. Now you're going to remind me that so long as I smoke, I will not be eligible for a heart transplant. Well, this has never been an issue because I'm living in limbo between a transplant and too healthy to function for work. I've been "retired" since I was 28. Now at the age of 35, I search the Net and wait for friends and family to get off work. The best part of that, when they get off work, they have the energy of a future transplant candidate.
I guess my original question should be - does anyone who tries to act like they are healthy, and tries to partake in extracirricular activities that they are not able to perform, find themselves trembling or slightly shaking, so much so that others notice? At times, it feels like a severe adrenaline rush throughout my body. I want to note that the life style I am leading may be very dangerous and extremely unhealthy for others with heart disease. Just because I am willing to take these risks, I don't encourage anyone else to do the same. There are reasons for others in the exact same boat as I, that can seriously deminish their own and others quality of life. firstname.lastname@example.org
Mike L, June 5, 2006 - Hi, I have been a paranoid person my entire life and thought I've had many diseases but I just have a strong feeling about this. The problem is that I'm 16 and should have decades left on my life. Back in February I was sitting on my computer playing a game and I got a quick pain in my chest. My heart felt like it was out of control. I figured it was just a panic attack because I thought I was having a heart attack. I nearly went to the emergency room but I decided against it and fell asleep.
Well, this went on for a week and never seemed to stop so I went to my doctor and he said it seemed like I have an extra heart beat and that is was benign. He scheduled me an EKG that day and I went and I got the results a few weeks later. They said it was normal. The out of control heart rate has persisted until a few weeks ago when it calmed down. I kept complaining to my parents that something is wrong but they trusted the EKG. Now a few weeks ago my feet started swelling on the upper outer side. My appetite is gone and I have a cough that will not go away. I have some minor fatigue and weakness and I am forgetting things like crazy. My blood pressure is normal but my pulse is 102. I went on a short two mile walk with my dad a few weeks ago and I made it but I had so much trouble compared to the last time I did it and I when I started trying to catch up I felt like my heart was going to stop because it couldn't handle anymore.
I can't believe this and that I'm going to die in my teens or early 20s because my doctors didn't catch the problem. I went to the doctor when the swelling started. My doctor said through a physical examination that my heart didn't seem enlarged and that my vital signs were normal. I am a 5 foot 11 inch tall male who weighed in at 203 lbs at my last official weigh-in so I'm not overweight too badly. I bought a scale and in the morning I weigh 204 in the mornings and sometimes up to 208 at night. Is this normal? I should be losing weight because I haven't eaten anything in forever.
I just want to live, not die before I hit 20. email@example.com
Karen K's June 5 reply to Lynda's June 1, 2006 - Hi Lynda, I'm not sure I want to admit to this but I am seen at the University of Iowa Heart Failure Clinic. They have never done an EKG on me that I can recall. I had my first MUGA done by them this year and I believe I've been going to them at least five years. I am very well compensated and know that I likely really surprise them when I do "the walk." I am on the usual meds: Lanoxin, Coreg, benazapril, Lasix, and Spironalactone.
Personally, I believe I could actually not be taking Lasix as often as I do (40mg on Monday, Wednesday, Friday, and Sunday) as I don't retain fluids. I weigh myself religiously morning and evening. Maybe someone else will respond to this and their response will be different from mine. Karen. firstname.lastname@example.org
Jon's note: My cardiologist has done an EKG on me every time I've ever seen him, regardless of my current class or condition. An EKG can spot certain serious problems (improper long QT or QRS interval) more cheaply and easily than many other tests.
Margaret D's June 5 reply to Lynda W's June 1, 2006 - Truthfully Lynda, I don't believe you don't need an EKG very often. I can't remember the last one I had in the office. If you are on amiodarone you need one about every 6 months or so to look for side effects from the drug. If you take digoxin, you may need one once a year. If the patient is having a new problem such as palpitations it would be appropriate to get one or a 24 hour Holter monitor. Unstable angina would be one that might need an EKG more often.
It would really depend on what your husband has - valve problems, idiopathic cardiomyopathy, heart surgery? An echocardiogram will yield more useful information in most CHF patients. My cardiologist does an echo every 6 months, some others will only do one a year. As Jon says many times, the most important thing is how we feel, not our numbers. I hope this helps! email@example.com
Nancy K, June 5, 2006 - Hello, I'm curious how a contraindicated drug could affect a patient. For example, if a tiny elderly patient with Sick Sinus Syndrome and bradycardia and without a pacemaker, is given a 6.25 mg dose of Coreg, could this strength medication be lethal? I'd love to hear feedback. firstname.lastname@example.org
Jon's note: There is no way to know what the effect would be on an individual patient in such a situation. If used, it should be started in the hospital (cautiously). It would also partly depend on current heart rate. It might be very dangerous or it might have no effect at all. Contraindications are for patient populations in general.
Jon, June 7, 2006 - Hi everyone, There are a couple of reasons posts are not put up every day. My meds change so fast lately I sometimes literally change my wallet card 3 days in a row. That's because of the problem with my hips, back, and muscles. We have not figured out exactly what it is and two orthopedists have given up. I have an MRI tomorrow and see a rheumatologist soon. The blood work, rash, and type of pain are consistent with several conditions such as lupus but these are hard conditions to nail down for certain and we just don't know what it is yet.
On the bright side, pain control has finally been successful! We had to leave Vicodin behind, skip oxycontin, and go one step beyond that to get there so I am spending today getting used to the initial effects, which are tough because I started a round of prednisone yesterday and man, I hate its effects. Hey, no one said it would be easy. It's worth it to be able to shower and dress without doing it in stages, though.
I want to thank everyone who has donated this year. Without you, and a few larger-than-usual donations, we'd be in serious trouble. At the current donation rate, I'll make about 9000 dollars this year - if I'm lucky. That's not much of a living, especially for the amount of work involved. So to all who donated, large and small, sincere thanks - you're saving my hide. :-) Another thanks to Rick for the turntable. I am getting a cartridge next week! Jon.
Ann L, June 7, 2006 - Hi everyone, Today was bill paying day at my house. I responded to the note I had written myself, which said, "Send check to Jon." The thing that moved me to act was the report to us on the medical presentation. It reminded me of how much you put into the group and how much I missed you when you were back at work. email@example.com
David Wilson's June 7 reply to Emil S' June 5, 2006 - Hi Emil, Please stop smoking and drinking - they are poison for your weak heart. I never smoked and never drank much but if I did I think I would now be dead. Pushing yourself too much is not good in the long run. Exercise to a point is good but overdoing too much so you get shaky is real bad. You are making your heart worse and wearing it out. It won't last that long if you keep pushing yourself.
I am having a dual chambear pacemaker put in Tuesday and I will report back how it does. I am an optimist so I think it will help me. I plan on going back to work Friday so I hope everything goes okay. I think God will take care of me since he knows I am not too good at taking care of myself anymore. firstname.lastname@example.org
Sandy N's June 7 reply to Emil S' June 5, 2006 - Hi Emil, I'm not sure what you're expecting us to say. You're playing with fire and slowly abusing your body. Your shaking? I'm not sure why and most people don't know either. If you're trying to kill yourself you're going to get your wish. If not, stop all that you're doing to abuse your body. Take your life and your body seriously before it's too late. I wish only the best for you! email@example.com
Jon's note: Shaking of this kind is usual when addicted to alcohol or tobacco and not getting enough at any given time. It can also be caused by excessive fatigue when you have reduced heart function.
Jack D's June 7 reply to Emil S' June 5, 2006 - I've long used the phrase suffering from "terminal stupidity" to describe humanity in general but it seems you are not only enjoying it, but bragging about it. Of course your friends must know about your condition so they just help you along in your quest for the Darwin Award. Nice friends, but they were probably all drunk or stoned too, so why not party till you croak?
One thing I don't understand though, is why you typed so many words when a simple Duh! would have been sufficient. Sorry I can't join you in a chorus of "Poor Poor Pitiful Me" but I have a life to lead. So go on and keep up the good work but remember - you get what you pay for. firstname.lastname@example.org
Linda K, June 7, 2006 - Hi folks, This is my first post here, but I've been an avid lurker since March. I've been reading all I can about BiV pacemakers, and I know they are currently indicated only when there is an electrical conductivity problem, but I have lucked into a study at the Cleveland Clinic in which they are testing the devices to see whether they will help people like me who have a narrow QRS but an echo indicating mechanical desynchrony.
Has anybody else out there had any experience with this test? I'm excited about the prospect of something that will make me feel a lot better but I'm also worried about the fact that because this is a double-blind study, I could be stuck with it in the "off" position for 6 months.
Also, if anybody is interested, I found a really great naturally low-sodium salsa. It's by Sahara Cuisine, and you'll find it in the cooler along with things like their hummus. If you crave something creamy, it also makes an excellent dip when mixed with sour cream. email@example.com
Hitendra G, June 7, 2006 - Hello all, My father had a congestive heart failure about 10 years ago. He has since then recovered well and his ejection fraction has hovered around 43% during all those years. He is currently feeling good about his health in general. One of the new doctors recently advised him to go for cath (and then probably angioplasty) as it has been 10 years with this low ejection fraction.
I'd like to understand if time is a factor in such cases that determines the need for surgery to take care of the blockage. Since my father feels good, I really don't want to see him go through the surgical process. However, the doc says since it has been so many years, he should go for angiography. Your advice would be very helpful. firstname.lastname@example.org
Loretta D, June 7, 2006 - Hi, My cardiologist prescribes me Coreg at 6.25mg once per day and torsemide at 20mg twice daily. I was on Cozaar but was taken off this after I lost a lot of weight and my blood pressure began to drop too low. My EF has gone up from 30% in 1999 to 55% now. My question is: Is the 6.25mg of Coreg even worth taking? Also, he never runs any blood test on me. The only treatment I get is an echo once per year. Is this normal? email@example.com
Jon's June 7 reply to Loretta D's June 7, 2006 - Hi Loretta, You absolutely require blood testing at least once every 3 months when taking that much torsemide. In fact, in your situation, too much diuretic could be causing your blood pressure drop. I would look into a different doc - a heart failure specialist.
I personally believe that the low-dose Coreg is worth taking to prevent relapse and EF reduction. Jon.
Roger H, June 7, 2006 - Hi, I don't know how many use Hain Eggless mayonnaise, but they have discontinued that product. I called the company (toll free number on the jar) to voice my concern and was told if there is a lot of response, they might bring it back. That has happened to me on a couple of other items. firstname.lastname@example.org
Giorg, June 7, 2006 - Hi all, Is anyone else suffering left atrial enlargement here? I had an echo lately and despite over the years my EF being pretty much the same (around 30 to 40%, now 30%) and left ventricle dimensions being the same (it is just a little dilated), my left atrium is enlarging. It was 3.5 cm at diagnosis (when my EF was 17% and I was in edema) and now is 4.7 cm.
That is a sign of evolution of the disease, I guess. Is that something that I can stop? I don't know, by maybe raising beta-blocker dose or raising diuretics? I'll talk with my cardiologist, but does anyone know how to stop that enlargment or reverse it? Thank you. email@example.com
Lowell P's June 8 reply to Giorg's June 7, 2006 - Hi Giorg, You have brought up a point that has given me concern for a long time - heart enlargement. I know my left ventricle is enlarged to about 7.5cm and I think the normal is up to almost 6cm. Now that you have brought it up here I will ask my doc what is happning with my heart size. Lowell in Arizona. Lpepper3m@aol.com
Joy K's June 8 reply to Giorg's June 7, 2006 - Hi Giorg, My left atrial dimension is 5cm. I have seen a steady increase from 4.5 to my current reading of 5. My cardiologist believes that for me this could be an added setback if the size continues to increase. The major concern is when the left atrial dimensions increase to 5 and beyond, the more likely atrial fib could develop. This would in turn reduce EF.
I am on Coreg at the target dose of 25mg BID. Having started Vasotec a few months ago I am titrating my evening dose. The goal is reach 5mg BID. Currently I am on 5mg Vasotec at noon and 2.5mg at HS. I have played around with different times for taking the Vasotec. These times work the best for me because of my low blood pressure. I am hoping in another week to raise my HS dose to 5mg. I don't know of any medication that is specific for decreasing atrial dimension. I know pacers have been successful in decreasing heart size but I do not meet the criteria for a pacer at this time.
I continue with prayer. Please update if you hear of any success with decreasing atrial dimensions. Thanks, Joy. firstname.lastname@example.org
Jon's note: What is HS?
Jim C's June 8 reply to Emil S' June 5, 2006 - Hi buddy. I was moved by what you had to say, and I choose to think that it was a cry for help. Unfortunately, all I will be able to do is pray. You sound depressed and desperate and I can't say that I blame you, but you will find that many of the people who participate in these discussions have chosen to respond to their situations with faith and hope. Stuff happens! What matters is how you respond.
Many of us have found faith in God. I certainly believe that I am experiencing a miracle of healing. The news I received at first was not encouraging. My church has a web site and a piece I wrote about my heart failure and my faith was published there this week; see http://lifecentre.org.
I am not going to tell you that you are wrong to feel any of your feelings, Emil. I do not know you and I do not know your situation, but I will suggest that you could make some changes. Stop smoking and drinking. Think about how your outlook could change. If you have any sort of relationship with God, or would like to, it may be time to reach out to Him in a big way.
God bless - follow these discussions. People have found answers that work for them. Perhaps you can get some ideas. email@example.com
David Wilson, June 8, 2006 - Hi, I had my dual chamber pacemaker put in Tuesday. I was released yesterday and feel pretty good. My left shoulder is sore but the incision is not that big and I have not taken anything for pain except for sodium naproxen, which I use for my arthritis. I can't tell if I am better yet but I sure am not any worse. I think I will have more energy, but only time will tell.
I am going back to work tomorrow. I just can't lift or raise my left arm much, but that is okay since I am right handed. This was the easiest surgery I have had yet. Anyone thinking about having a pacemaker put in, I think it may be worth it but it is your decision. I had a St. Jude pacemaker put in. I hope everyone is doing okay. firstname.lastname@example.org
Tom C, June 8, 2006 - Hello fellow CHFers, Can anyone estimate roughly what percentage of us under retirement age are still working full-time? I am, although it's hard. When I see comments on this site I sometimes wonder if that person is struggling to get to work every day as well as deal with CHF. email@example.com
Valerie R, June 8, 2006 - Hi Everyone, I went to our local Wild Oats, an organic food store. It's expensive, but I was looking for low-sodium hurricane supplies. We in Miami do things like that. <g> Anyway, I found a chicken noodle soup which takes less than 30 minutes and is a meal for up to five people, especially if served with no-salt French bread made in a breadmaker. You do have to add 6 cups low-sodium chicken broth, a chicken breast (optional) and 2 tablespoons No Salt Added butter. I used a broth at 140mg sodium per cup so I guess mine came to a little over 150mg for a portion. If you can't find it your way, try www.frontiersoups.com. It's very good for lazy people or people in a hurry or people who are hungry! firstname.lastname@example.org
Jon, June 9, 2006 - Thanks to all who responded about the term HS in Joy's post. It means at bed time (Hours of Sleep or whatnot), basically. Why doctors can't just say so to us in plain English is beyond me. ;-) Jon.
Giorg's June 9 reply to Tom C's June 8, 2006 - Hi Tom, I am 31 and I work full time. Mine is a desk job, I am kind of a marketing analyst. I was diagnosed 5 years ago. I took 5 months off after diagnosis and roughly one month off every year since then because of ups and down, flus, etcetera. It is tough. My boss is very sympathetic but for sure my career is stuck and actually is going backward. I was going towards a kind of manager career, but since the diagnosis I am stuck in front of a computer all day long working on Excel. :-(
The number of meetings I go through decreased a lot. That is both due to my boss' choice and to my choice. I tend to avoid stressful situations and working alone on numbers this is easier. If I have to deal with arrhythmias for example, it is much better being alone in front of a computer than being in a meeting making a presentation.
Anyway, my major concern is not career: Being alive and working is already a God's gift, I am not asking more. My major concern is that I have to take bus and train to get to my office. One hour to go, one hour to get back every day. During summers it is so hard, and public transports are so dirty and full of bacteria. I definitely need an office closer to my place but it is kind of impossible to find a new job with this condition, isn't? email@example.com
Ben B's June 9 reply to Tom C's June 8, 2006 - Hi Tom, I still work full time. My doctor put me on disability about 9 years ago when I was diagnosed with a 10% EF. Since then my EF has risen to around 45%. About 4 years ago he told me I needed to go back to work; that he wouldn't sign for me anymore. I guess he was right because I've been working since then in a fairly easy government job and feel okay. I don't really have a problem with the job and like it.
The only problem is that I also got married during the past few years and am now terrified a lot of the time I am just going to drop dead, because often even people with near-normal EFs and who feel fine just do, especially if they have a history of heart problems. I have some PVCs but they ran EP studies on me and said I didn't need an ICD. Needless to say, I don't have adequate insurance and am hoping to sell a house I inherited to get some money for my wife to live with if I go.
I am ashamed to say I that because I feel so good I have also been adopting an "ostrich" mentality and pushing back my cardiologist appointments for over a year because I am worried he will send me in for an angiogram and kill me with some procedure before I can set up the funds for my wife. My dad died of a staph infection he got during an angiogram. Hospitals are ridden with super germs.
However, my wife has convinced me I have to go in and I have an appointment in a couple of weeks. I'm not completely crazy, I've been seeing my PCP regularly to get my meds (which haven't changed in eight years). Thanks for listening, it's been a long time since I vented on this great site, that is a true lifesaver. firstname.lastname@example.org
Scott Brown's June 9 reply to Emil's June 5, 2006 - Hi Emil, It appears you picked a tough crowd if you expected some sympathy. <g> Cigarettes are so addictive that I'm sure everyone can appreciate it will be a tough battle to overcome your addiction. I wish you the best of luck with this.
Your suggestion that cigarettes and alcohol somehow give you more energy to focus is just wrong. If you can get rid of your dependancy on cigarettes, I think this will help you to eventually feel better. I don't think a beer or even 2 beers are going to make a huge difference as long as you include them in your fluid restrictions. If you are lucky, they might even provide some of the diuretic effect to reduce some swelling.
If you want to make the biggest difference in your life, start a regular exercise program. Even if it does not improve your condition, it will improve your symptoms (improve strength, breathing, stamina, workload capability, etc).
Best of luck, Emil. You are going to find there is no sense spending your life pretending there is nothing wrong. The fact you are on this site looking for help proves you care about your condition. Scott.Brown@sunlife.com
Charles W's June 9 reply to Emil's June 5, 2006 - Hi Emil, Your narative is interesting. Your question is, do others tremble and shake? The answer is of course, yes, but it may or may not be cardiac related. Alcohol can cause tremor, but you know that. I guarantee you there are people in this room who violate rules. They're not as vocal as you. Yes, you can overdo it and there's no question that a beer and a cigarette can create a temporary energy boost. You're probably angry too, and that doesn't help matters.
I can only say: Avail yourself of the best medical treatment. You weren't specific about what your docs have said. Above all, don't do nothing. I'm not saying you are, I am saying don't. Good luck. CClmb3@aol.com
Mary W, June 9, 2006 - Hi, I have just been diagnosed with DHF and I am struggling with this diagnosis. I am 39 and just had a husband pass away in 2004 with heart failure so I knew the signs but didn't want to admit it was happening so now I am struggling to lose the fluid, get control of the angina, and to regain my stamina. Does anyone have any suggestions on a good exercise routine? email@example.com
Mary C, June 9, 2006 - Hi, I had a heart attack 12/21/2006. I had an angiogram, which showed no blockages in my heart or valves but my heart is growing. I swell up. I have been on a lot of awful meds. I was not able to tolerate them so now I am on hydrochlorothiazide and it is helping. I am on a very low dose. If I take a higher dose I get Pal all day long.
I have good days and bad days. I have seen 3 of the "best" docs in the area. I have not found one I trust or communicate well with. I am not sure what to do next. My regular doctor humors me a lot but at least he listens to me. I am having trouble eating. I find that takeout food makes my blood pressure go up and then I swell up. I have had possible TIAs. I am still searching for a decent doctor. I think I found a heart failure clinic in town. My insurance is switching so I have to wait until I know for sure they are on my list.
They are not sure what caused the heart attack. When I was on a beta-blocker, it gave me the feelings of a heart attack. You know, heavy arm, chest pain, SOB and I ended up in the emergency room. Seven days later I had a heart attack. I feel kind of lost. MHCARRS@aol.com
Jon's note: What is "Pal?" You had 2 heart attacks - one before and one after taking a beta-blocker, is that right?
Lowell P, June 9, 2006 - Hi Jon, One of the comments on my last echo said, "Left ventricle contractibilty is decreased to about 35%." Are they talking about ejection fraction or is this something else or should this be 100%? My ejection fraction was shown as being between 35 and 40% and shown separately. Lpepper3m@aol.com
Jon's note: I could only guess. I hate the way docs write up these echo summaries. If I were you, I would directly ask my cardiologist - not his nurse or a tech.
Michelle D, June 9, 2006 - Hi, I am new to this forum. I am 37 and passed out 2 months ago. The emergency room staff did an EKG that showed a left bundle branch block and a follow-up echo showed my EF at 45 to 50%. Since then I have had numerous tests, a stress echo, adenisine myoview stress test, CT heart scan, and blood work which were all normal. The follow-up Myoview and stress echo showed my EF at 49% and 50% (they say that is low normal). I have no heart englargement, CAD, or anything else they can find.
My doctor wants to put my on ACE inhibitors and beta-blockers. I have already tried two beta-blockers that I did not respond well to (Coreg and Toprol-XL). My husband and I were planning on having another child (we have two, 2 years and 3 years old), right before I passed out and received these diagnoses. The doctors tell me that pregnancy could be fine or could worsen my heart - they can't really say what my outcome would be.
Any suggestions for me on pregnancy and if I should start the medications (if I decide against pregnancy). Given my EF isn't that low, I wasn't sure the meds were really necessary? Thanks. firstname.lastname@example.org
Jon's note: Anytime you pass out, it's deadly serious. Find out how serious your BBB is and if pacing is for you. That could do it. If you decide against pregnancy, an ACE inhibitor or ARB might be a good idea. I don't know about the beta-blocker with your BBB, it would partly depend on your usual heart rate and blood pressure. Anything under 55% on EF is abnormally low, period - it sounds like they are fudging on that one since they can't find the cause.
Deb, June 12, 2006 - Hi, I have a question. What is the average blood pressure for those with CHF? I know it varies from person to person, but I'd be interested to read what others have experienced. email@example.com
Jon's note: My CHF doc likes mine around 100 over 70.
Mary C, June 12, 2006 - Hi, I'm sorry, pal means palpitation. They are not sure when I had the first heart attack. They just told me I had damage on my EKG on 12/21/2005. This EKG showed old heart attack damage while I was going through a current heart attack on 12/21/2005. I never felt the first MI. I do remember feeling really awful during a cardiolite stress test on 11/21/2005 and they had to stop the test but they never told me I was having an MI. I just felt sick for days.
The second MI was more intense. I was on a calcium channel blocker when I had the MIs. I am very sensitive to meds. I can only take 12.5mg of HTCZ or I get the palpitations. I am sorry - my days get kind of mixed up and I am trying to remember to write stuff down.
I am glad I found this site. My doctors really protect me about medical diagnoses, because my second heart attack was during a doctor visit. When they were telling me some information about the breast biopsy I was going to have, the breast surgeon was telling me details about the procedure, and I went into the parking lot and thought I had food poisoning. Then I called my second cardiologist and he said don't worry. I said I really feel sick and finally I went to a hospital emergency room and they discovered I was having an MI.
Women's symptoms of a heart attack are so subtle compared to a man's. I had jaw pain and a bad stomach ache. That is why I thought I had food poisoning. The good thing was I saw a newscast about women's heart attacks that resemble indigestion so I knew something was wrong. I kind of made the second cardiologist mad when I insisted something was wrong. I had a great emergency room experience. They did that blood test that throws off heart enzymes so that is how I ended up in the hospital and had a cath.
My cardiologist waited almost 14 hours to do it. My PCP thought I should have had it a lot sooner. I checked into the ER at 9:30 PM and was admitted at 12:30 AM. I had the cath at 7:00 PM the next day. MHCarrs@aol.com
Mary C, June 12, 2006 - Gosh Jon, Your site is great - I have learned so much already just by reading my last post and how you have it set up to the links. Thank you! I am going to talk to my husband about a donation to your site. I am not working so I am hoping he will allow me to donate. I am in the process of reading The Manual but I feel a little overwhelmed. I think it is because I now know that my doctors are not doing their best for me, either because they don't know or are very busy. They are very kind, but they are doctors.
I guess I need to become a better self-care advocate. Now I know why the double dose of HCTZ does not work. I have stomach edema, so the pills are not working and my heart is straining somehow because of the double dose. Now I also know why my skin on my legs are split, I thought it was really bad dry skin. Gee whiz. Now I know I need to cut really back on salt. They never told me. Wow! Just thanks. MHCarrs@aol.com
Jon's note: You're welcome. Any donations at all are very welcome right now. Our donations are down by 30% this year and it's getting tough round here. On the other hand I know what it's like to make do with one income so if you can't donate, don't feel guilty - you educate yourself and get proper care. That's why we're here.
Linda M's June 12 reply to Tom C's June 8, 2006 - Hi, I am 59 and just received tenure as an Assistant Professor in Mathematics at a community college in California. I teach full time, work out, take medication classes, get massage, attend therapy and am fairly active. My husband and I are both bareboat certified and sail our 36 foot Catalina on San Francisco Bay.
I have cardiomyopathy, diagnosed in 1997. I have been in heart failure 3 times. I take 6.25mg Coreg twice a day. I can't go any higher without becoming clinically depressed. The Coreg is literally keeping me alive. However, I try to live each day one at a time and do what I can to improve my health.
When I was diagnosed, I was in a very high stress job that I felt trapped in. Now I am in love with my job. I try to find activities that make my heart smile. I know that this doesn't work for everyone, and it may not always work for me but for now I am doing the best I can do for my body, listening to my body, and enjoying each moment as it comes.
My prayers, best wishes and support to others out there who face the same fears, hopes, and dreams. Remember, attitude is so much a part of this illness. firstname.lastname@example.org
Mary C, June 12, 2006 - Okay, I just read the link to calcium channel blocker info and I am pretty mad. My first doctor gave it to me to slow down my heart rate. It runs around 100 beats per minute, resting. Now I know why I had the heart attack; and they were acting like clams. One doctor in the ER said, "We only see these type heart attacks in people who use crack" and I am sitting there thinking, "What is crack?" Duh! I am so naive. So at least this ER doctor was on the right track - it was some kind of chemically induced MI but no one made the link to CCBs until now, when I saw the info.
My husband said we could donate. He is getting paid Wednesday. Thank you for having Paypal. That will be easy. It won't be much but it will be something. Could you imagine if all the people on this message board just gave a dollar a month? That is a lot of money - even the lurkers. Just a thought. MHCARRS@aol.com
Tom S' June 12 reply to Linda M's June 12, 2006 - Hi Linda M, I don't want to be a wet blanket but there are many of us who have lost houses, cars and sometimes more, because of CHF; so painting such a wonderful rosy picture can be deceiving to many. The question was how many folks work, not how many folks can lead the life of Riley.
The whole question of quality of life sometimes revolves around quantity of life we want. The quantity is largely dependent on the physical conditon of the heart, generally measured in output capacity or EF. Nowhere in your response did you inddicate your EF. Jon has had many posts concerning EF and how deceptive it can be. When you are active, you are straining an already strained organ and sometimes that can do more harm than good.
It is all well and good that you feel you can work, but without knowing your overall medical condition there is no benchmark to judge why you can lead such an active life. Most of us can't and shouldn't. email@example.com
Linda C, June 13, 2006 - Hi everyone, I am Jon's wife and financial secretary for CHFpatients.com, Inc. I am about 3 weeks behind in processing donations and sending acknowledgements, but I hope to catch up soon. My apologies to everyone for any inconvenience. Thanks! firstname.lastname@example.org
Jon's note: Linda works long hours, then goes to class due to an accelerated Master's degree college program required for her level at work. She also does the housework and bills and helps take care of me. Throw in all of our company's paperwork and she is a miracle worker to get things done at all. She's the real reason the web site is still running.
Margaret D's June 13 reply to Mary C's June 12, 2006 - Hi Mary, Can you point me to the exact section where you were reading on calcium channel blockers? Certainly it is well known that they can worsen heart failure and thus are contraindicated in patients with CHF due to left ventricular dysfunction. I have not read that they can cause heart attacks. They have been given for angina for years. Heart attacks are heart muscle death due to decreased blood flow from blockages or spasms or the like. They are also appropriate for some arrhythmias such as SVT, in those without structural heart disease.
I was on Verapamil for over 5 years to effectively control my SVT. Then I developed non-ischemic cardiomyopathy for no known reason and I was pushed into worse failure by being on the Verapamil. It seems you must have been having symptoms similar to angina for them to perform a stress test, and it is very possible that you were treated appropriately with a CCB. Medicine is not an exact science and many times the best course of action may involve some trial and error. Non-ischemic cardiomyopathy may be even more difficult to diagnose, especially in younger patients like Jon was at diagnosis. email@example.com
Jon's June 13 reply to Margaret D's June 13, 2006 - Hi Margaret, I think I'll pop in here with my 2¢ worth, although it's not a doctor's opinion. Mary C refers to the information at chfpatients.com/text/calcium_channel_blockers.txt. Heart attacks (heart muscle infarctions) are not always caused by decreased blood flow, as I understand it anything that damages heart muscle cells can cause a heart attack. Suddenly stopping a beta-blocker can cause a heart attack, for example.
In anyone with even suspected weakened heart function, amlodipine (Norvasc) should always be the CCB of choice since it is the only drug in its class that won't worsen CHF. What if verapamil was part of the reason for you developing CHF rather than just worsening it? Medical opinion on CCBs is changing to include that possiblity.
I have no idea what actually caused Mary's heart attack. I do believe that doctors are usually hopelessly behind the information curve and that's why we cannot afford to be the same. Note the quote from a study done in 2000: "Doctors who did the analysis say the main lesson is that CCBs should never be given as a first-line treatment to people with high blood pressure."
Also, "Compared to people who took other drugs, people taking CCBs had a 26% higher risk of heart attack, 25% higher risk of CHF, and 10% higher risk of combined major heart disease. Another study in the same journal issue found that compared to ACE inhibitors, CCBs increase risk of heart disease by 19% and risk of heart failure by 18%. That study included over 26,000 people with high blood pressure."
I think these are some of the quotes that influenced Mary and I believe they accurately reflect the journal articles I paraphrased. CCBs are under a lot of scrutiny now and for good reason. It doesn't make them inherently bad drugs - it makes them like every other drug - a med to be used cautiously with full knowledge of the potential risk versus benefit profile.
Sorry Mary and Margaret, if I get too fiesty. I didn't take my morphine today due to a biopsy appointment and I'm a bit testy. <g>Jon.
Mary C's June 13 reply to Tom S' June 12, 2006 - Hi Tom, Good point. Two weeks ago I was feeling great and I was on the University of California Santa Cruz campus, doing the trails with my kids. It was so much fun. I wasn't breathless or anything. So this one beautiful part of the trail was a small ravine, about 20 feet where we went straight up, then we hit 2 more, each about 20 feet. I didn't get tired until the third one.
Little did I know what exercise in moderation meant - I am still learning since newly diagnosed. Medical doctors are not educating me much. So the past two weeks I have been on a recliner, swollen and struggling with palpitations, chest pains, arm pain - you know, the works -taking double diurectics and nitro. I didn't know what is going on until God led me to this site. You may have a good day and do a lot of fun stuff, but man, your heart pays for it in the long run.
So now they are finally sending me to cardiac rehab. So I am going to have training wheels for awhile until I learn how to pace myself. Gee whiz, it was fun, but not so much fun that I want to spend another two weeks in a recliner. <lol> So I am slow but learning. Good input, Tom S.MHCARRS@aol.com
Tom S, June 13, 2006 - Hi Jon, As soon as I get out of Chapter 13, we can start adding a little bit to the CHF forum coffers. Thanks for being so supportive of us - it is greatly appreciated. With sincerest best regards and kind wishes to you and your entire family. Tom S. firstname.lastname@example.org
Jon's note: Rather than financial support, why not keep presenting the views that I don't present? It's a valuable gift. Our mindsets are different and that makes your posts valuable to all who read here. A forum dominated by the moderator stinks.
Kate M's June 13 reply to Emil S' June 5, 2006 - Hi Emil, I won't bother with your ridiculous excuses for maintaining bad habits. I'm a bit cranky at the moment because my diabetic husband just ate his third bowl of vanilla ice cream with chocolate sauce washed down by a fully sugared Dr. Pepper.
The shaking you mention could be related to blood sugar levels so I would have your PCP do some glucose tolerance testing. It could also be neurological and an evaluation by a neurologist might be considered by your PCP. As someone who quit a 4-pack a day cigarette habit, a 3-Manhattan a night cocktail habit and lost 115 lbs, I can't say I sympathize with your attempts to kill yourself through abuse. Kate. email@example.com
Jackie G, June 13, 2006 - Hi everyone, I have a hard question and was hoping someone could help me. My mother-in-law is 74 and was diagnosed with CHF a little over a year ago. Since the original episode where they drew fluid off her heart she did not have any more episodes for 8 months. Since that time the fluid has been collecting about every two weeks. She has either been to the emergency room to have the fluid removed or the doctors increase her Lasix to double the amount she is taking and it removed the fluid this time. Her over-all health is poor. She is obese and has uncontrolled diabetes.
She falls frequently because of dizziness, which the doctors said could be from the Lasix. I talked to her this morning and she says she is just so tired she can barely keep her eyes open but she hasn't done anything. Her voice is slurred and I am so concerned but the doctors don't seem to want to do anything else. I am beginning to think that they think she is near the end and I wanted to see what your opinions were.
Is there anything else I can do? Any physical exercise is out of the question because she can barely get to the bathroom and that completely tires her out. Thank you so much for your responses. Jackie. firstname.lastname@example.org
Mary C's June 14 reply to Jon's June 13, 2006 - Hi Jon, I was on Cardizem LA. My first (now fired) cardiologist was trying to slow down my heart rate and also lower my blood pressure. I have found out that a cardiolite stress test can increase your chances of an MI also. I guess between the two my chances of heart attack were higher. We really don't know what caused it, except it resembled a chemically-induced MI. Who knew? Not me, that is for sure.
Anyway, then the second cardiologist put me on a beta-blocker. I had horrible asthma with it so I asked the third cardiologist if beta-blockers can make your asthma worse. His answer was, "It must be doing something good for your heart so stay on it." So several steroidand nebulizer treatments later, I finally went to my PCP. The Nurse Practitioner was jumping from one foot to the other trying to hold her tongue as she treated my asthma. She finally said, "When do you see the PCP again?" I said in a month. She said that I needed to see him a lot sooner but she wouldn't answer the question about beta-blocker use and asthma, except that she said, "Point it out to the cardiologist."
So I called the cardiologist and demanded to know what was going on with my asthma. Finally they took me off the beta-blocker. I was in this vicious circle of high blood pressure, beta-blocker and rapid heart rate, more albuterol and high blood pressure, beta-blocker and asthma. I literally felt like a dog who chased her tail. I was exhausted, depressed and confused. My asthma had never been that bad. It cleared up 5 to 7 days after stopping the beta-blocker.
You have to watch your doctor and take care of yourself. I now check every med before I swallow it. I love meds when they work. I just have to be careful, but somehow it felt like every time my cardiologist gave me a new drug, he was handing me a bullet to put in my empty gun. So I am really careful now. My goal is to take the right med to keep my heart damage to a minimum and live my life as well as I can. MHCarrs@aol.com
Margaret D's June 14 reply to Jon's June 13, 2006 - Hi Jon, With all due respect, Jon, some of those references are 9 to 10 years old and yes, CCBs are defintely not the first line of treatment for high blood pressure any more. That's where a simple diuretic or an ACE comes in. But I tend to get a tad feisty myself whenever someone tries to blame a physician for something major like a heart attack! You know as well as I that what the doctor prescribed for her may have had nothing to do with it. She might have had an MI earlier, she might have died, or it may never have happened if he gave her some other drug.
It especially irks me when people with very limited to no knowledge of medical standard of care, get sick, read a bunch of stuff on the Internet and become experts. It is very possible that she does not even understand basic cardiac anatomy - or she may! I just hate blanket statements that blame medical people. Doctors have years of training and personal experience that goes into play in their decision making process. It is rarely as simple as lay people believe. I am not referring to you by any means, Jon. You provide a great service and ministry and run by far the best heart failure web site on the planet and I mean that! As you may remember, I am a registered nurse and I also know first hand from my own IDCM and CHF.
Okay, enough of my soapbox! I hope you understand. Margaret. email@example.com
Jon's June 14 reply to Margaret D's June 14, 2006 - Hi Margaret, The mentioned articles are listed in order of age with the first less than 6 years old. Studies exactly 6 to 9 years old caused CCBs to stop being considered the best way to reduce blood pressure in all patients generally. You confirm that with your second sentence.
So, if a study is accurate and helpful, why does its age matter? RALES is 8 years old and is still being re-analyzed because the information gained is helpful today, as are studies like SOLVD at 12 years of age. My policy on this site is, "If it is accurate and helpful, I leave it available whether it is one day old or 20 years old. If it is brand new but not helpful or is possibly inaccurate, it does not go up on site."
You say someone tried to blame a doctor for a heart attack. I stated "I have no idea what actually caused Mary's heart attack." Mary just quoted valid medical literature containing statistics which clearly state that in high blood pressure patients, "Compared to people who took other drugs, people taking CCBs had a 26% higher risk of heart attack." That was from an analysis of 9 CCB studies by the way, not an isolated trial. Her ER doctor stated that it looked to him like a chemically-induced heart attack. Maybe you should take it up with him. I think it was his comment that made the connection for Mary that CCB treatment might have played a part in her heart attack.
None of the CHFers here think they are doctors. It does seem to me however, that quoting the same medical literature that doctors use should be valid, which is what was done here. Interpreting that data is highly dependent on each individual's situation and that's where a medical doctor earns his money (we hope). At least that's what we pay them to do. ;-)
Actually, you have described me perfectly: A layperson who reads a bunch of stuff and becomes an "expert." I have no medical degree. I'm just the same as every reader here who keeps learning to improve their lives. Medical community comments on it are old-hat for me. Recently however, doctors are beginning to realize that an educated patient is both more compliant and easier to treat than a person who doesn't educate himself. Suddenly a lot of doctors like our site; I guess they figured out we weren't just a fad after all. They still don't donate though. <g>
Interestingly, at the medical meeting where I gave a presentation recently, the comment that made the most heads nod was this: "Communication is how chronic illness is managed and that's a basic fact we all must learn." This struck home with every doctor and researcher there. It's much more difficult for a doctor to communicate with CHFers who don't read, read, read. It takes awhile to read enough to start putting it together into a big picture, is all. We all have to start somewhere, sometime.
CHFers have complex health situations requiring a specialist's care, that's for sure. This is why we lay-experts insist on seeing a heart failure specialist - because we know how much we don't know. I refused just this week to see a physician's assistant for a "simple" rash. I insisted on seeing the dermatologist. Good thing I did. He wanted a biopsy before treating me because of my body's complex mix of health problems. That's why he's the doctor and why I discourage people from listening to physician's assistants and other non-doctors too much unless it's unavoidable. A physician's assistant wouild have given me the standard treatment without a doubt, not realizing that this kind of rash can be associated with lupus in people like me.
Not all doctors are worthy of defense either. There are great, good, barely competent, poor, and very poor doctors everywhere. That's a fact. My PCP 12 years ago was so incredibly ignorant about basic heart information that he literally almost killed me a couple of times before an ER doctor stuck his neck out and got me the treatment I needed (long story). This is why my philosophy is this:
Active partnership between an educated patient and a doctor who listens is key to heart failure treatment at all stages. One without the other always degrades care and thus, both longevity and quality of life. Now, we must realize that this puts a new responsibility on the patient but that's how it should be now that the educational information is available to most patients in terms they can understand. We should read everything we can get our hands on, then take it to our doctor and run it by him in a dialogue between partners in care, not between a boss doctor and an employee patient. If a doctor doesn't measure up, we should in fact fire him and find one that does. If a doctor thinks our ideas are all wrong, he is under no obligation to keep treating us either - it works both ways.
I know you were mainly just venting so I feel a little guilty about carrying on at length but I believe it is my responsibility because so many people read this forum, never posting. Often my replies are for them as much as for those to whom I reply. I wanted to make clear the value of many old trials and studies. People should realize that new information is not always better than old information. I also wanted to stress that it is never wrong to read up on your health conditions. It is wrong to stop reading about it because you think you know enough.
I have readers who are more knowledgeable on some aspects of heart failure than am I. Mary is just starting this process of self-education and the fact that she's got enough guts to do so and then talk in public about it shows me that she's got the right attitude - she just has to keep learning and applying what she reads to improve her life.
As an aside, heart anatomy is one of the toughest things for med students to visualize and many doctors might not pass a detailed test on it after they have been in practice 10 years or so. Let's keep in mind that a very significant number of people have non-standard coronary anatomy - one reason why that third lead is so tough to get right every time when implanting a BiV pacer - ask any device manufacturer tech or EP doc. Personally, I couldn't pass an exam on heart anatomy. I long ago decided it was better for me to know where to find information than to try memorizing everything. ;-) Jon.
Ivy D, June 14, 2006 - Hello, I wanted to share our story with all of you. I have not been posting on this site. However I have been reading it often and have gleaned much information. I was so scared when Chris was diagnosed with CHF, and the positive attitudes here and the knowledge has been most helpful.
My husband Chris was diagnosed with CHF on February 25th of 2006. He is tall, thin and 44 years old. We were on a vacation to see our son and the higher elevation seemed to exacerbate symptoms Chris already had since January of 2006. Chris had previously been diagnosed with sarcoidosis in his lungs. The thought was that the heart failure was secondary to sarcoid in the heart. We were at the heart clinic in Salt Lake City. Chris was not given a good prognosis. His CHF seemed advanced and sarcoid does not usually respond favorably.
It has been 3 long months and we just returned from a full battery of tests in Salt Lake. I am happy to report that Chris has an EF of 45% up from 15%, something no one thought would happen. He looks great and he feels better than he has in years. His sarcoidosis seems to be in remission and he is stopping steroids over the next few weeks.
My point is: Once CHF, always CHF - however things can improve and doctors don't always know how things will go. Chris is now taking lisinopril at 2.5mg, Lasix as needed, CoQ10 at 200mg, Vitamin C at 4g, Vitamins A, D, B, and omega 369, Primrose oil and CardioPlus by Standard Process. He has also been taking L-arginine and liquid calcium. He listens to a meditation cd from Kelly Howell called Healing Meditation.
I want everyone to understand that we were not given much hope and that heart transplant may not be an option because of an underlying problem. I was shocked yesterday because his lung scan was almost clean. The doctor at the University of Utah said he had never seen such a good recovery from sarcoidosis. Chris' echo looked great with very mild reguritation in his mitral valve and tricuspid (from moderate to severe). Chris did receive an ICD and was taking digoxin (Lanoxin). Coreg was not started due to low blood pressure. I asked Dr. Koufuri if he was sure things were going well and he said, "Don't you trust me?" I said that after CHF I don't trust anything. I hope this gives you hope and if some young mother of 3 is reading this, I hope you have peace even if just for the night. One day at a time. firstname.lastname@example.org
Ann D, June 14, 2006 - Hi All, I've been lurking for several months now and have gained quite a bit of knowledge from this web site. I live in southern Florida with all its related weather and I find that I am stressed to the max because of the season. By the way, I was diagnosed with CHF three and a half years ago and had to leave a job that I loved because of it. I also suffer from severe emphysema and asthma. I am on 5 different heart medications, 3 for asthma, pain control for arthritis, and take oxygen 24/7.
I get out of breath very, very easily, just walking from bedroom to living room, and I am only 53! I used to love to snorkel and swim, travel to Sanibel Island, etc,..., and now find that I can't do those things anymore. I am trying to build a new life around this disease, but like all of you know, it ain't easy! I just wanted to say that I will donate as soon as financially possible and please keep up the great work that all of you are doing. email@example.com
Wanda, June 14, 2006 - Hi, It's been so long! I have been doing well but they recalled my ICD in March of 2005. I have never had to take heart meds but I'm just glad to be in contact with others. My husband is such a sweety. I might post some of our pics sometime. firstname.lastname@example.org
Mary C, June 14, 2006 - Hi, I finally got hold of my medical records. All this stuff started 11/25/2005 so I am pretty late finally getting these numbers. Please help me understand. I read The Manual so I hope I am on track. My diagnosis was hypertension (high blood pressure), heart failure, an EF of 65%, and an abnormal EKG.
The EF is a good number but I feel crummy, go figure. My EKG 11/25/2005 showed no prior heart attack so my first MI occurred between this date and the date of my second MI on 12/21/2005. I guess my goal is to exercise moderately, get on an ACE inhibitor and keep my HCTZ, or find a better diuretic. I can't take a beta-blocker because of asthma. I tried Coreg and had massive chest pain 12/31/2005. I was on Nexium, Coreg 3.125mg. a nitro paste, and 3 nitro pills. They switched me to Coreg from Toprol-XL in the ER. It was on 12/31/2005. They sent me home with a Holter monitor but I still don't have that report. I was switched from Toprol-XL to Coreg on the same day. I had horrible, on my knees chest pain. The next day my wonderful husband knocked on my PCP's door and begged for help after hours. He is a friend and a Christian. He prayed with my husband. He switched my back to the Toprol-XL that day, and told me to wean off instead. At least he listens. As I was weaning off the Toprol-XL my third cardiologist, (I fired my second after the ER incident on 12/31/2005) told to stop the Toprol XL without weaning and to go on the HCTZ. I got really sick. So I went back to weaning, and then started the HCTZ. Is this normal medical care?
I am looking for a fourth cardiologist and it has only been about 7 months. Also, the medical report showed regurgitation and thickened heart walls, with mild pulmonary hypertension. I have loss 7 pounds in water since last Thursday. Thanks for the diet tips. I can breathe again and I am actually moving a little. Yeah! What a blessing this site is in my life. I was so lost before this site. Now I am doing better.
I am going to call the heart failure clinic tomorrow. My other choice is Stanford Hospital. I live about 3 hours away. Hey, I live in Fresno, California. I hope I can find a support group here. I hear Stanford has a very good heart failure clinic. I would like to keep the 65% EF. Because if I feel lousy at 65% I wonder what I will feel like at a lower number. Any advice? MHCarrs@aol.com
Jon's note: If your Coreg dose was 3 mg, how could you wean off it - that's the lowest dose? When switching from one beta-blocker to another, you should not wean off, only when stopping beta-blockers entirely. When switching, you should change to an equivalent dose of the other beta-blocker. With diastolic heart failure and some other conditions, EF doesn't go down even though you have heart failure. See chfpatients.com/faq/dhf.htm.
Mary C, June 14, 2006 - Hi, My echo report says - Normal left ventricular size with mild concentric left venticular hypertrophy. Overall venticular systolic function is normal with normal contractility. Diastolic dysfunction with transmitral flow suggesting impaired relaxation. Left atrium is mildly enlarged. Due to inadequate tricuspid regurgitant jet, pulmonary artery pressures could not be estimated.
So I guess I have DHF? After reading The Manual I think this is what is going on. Hey guys, how do you get a doctor to explain this stuff? They are stonewalling me. MHCarrs@aol.comMHCarrs@aol.com
Roger G's June 14 reply to Jackie G's June 13, 2006 - Hi Jackie G, If the doctors don't want to do anything else, and your mother-in-law does, find a new doctor or pressure her current doctor for answers. email@example.com
Michele F, June 14, 2006 - Hi everyone, I haven't posted in awhile because everything is going pretty well with my brother, who was diagnosed with IDCM in March and that's a good thing. However, recently his doctor (and his primary doctor agreed) said he can stop taking digoxin. Everything I've read about digoxin suggests that people are weaned off it and not to suddenly stop taking it. The doctor said that because he's only been on it since the end of March of 2006, that no harm would be done if he stops the drug now. The doctor also has stopped the potassium supplement and changed his Lasix dosage to once a day instead of twice a day. All of these things seem encouraging to me, but I still wonder about the digoxin. Does anyone have any experience with this? Thanks. firstname.lastname@example.org
Martha W's June 14 reply to Tom S' June 13, 2006 - Hi, I had CHF much longer than I'd been diagnosed for it (waiting for insurance to kick in before getting on a treatment plan.) I almost waited too long and was unable to lie flat, walk down the hall, do anything without gagging up fluid, my heart pounding, and gasping for breath for any little exertion.
My regular doctor said, "Lose weight, exercise more and by the way, my EKG machine must be broken because yours is off the charts." I went to a younger, more progressive general practitioner who said the same thing but he added, let me send you to a heart specialist. He saved my life by doing so. They all said their EKG machines must be broken, but by the time I heard it the third time I knew it was my broken heart, not any machinery.
An echo showed my left ventricle to have "ho hum" beats and not in synch with my right ventricle at all. They put me on Coreg, Cozaar, and furosemide at the time, thinking it might actually heal itself. It didn't, and 8 months later I decided to follow his suggestions and have a pacemaker. He'd originally ordered an ICD/pacemaker, but the doctor who put the (Medtronic) gizmo in said my heart was not going to stop any time soon, it just didn't want to beat much. It was supposed to be a 30 minute procedure that turned into a 4 hour ordeal.
Now, my pacemaker is antiquated but at the time it was cutting edge new. One of the 3 leads couldn't be inserted into the main aorta right. The doctor admitted that had I been an older patient, he wouldn't have kept trying so hard. Finally, the tip inserted but then I had a new set of problems - they had the pacemaker turned to a setting that caused my heart to pound the bed at night! Actually, it was the excess wiring, hitting my diaphragm and making me feel like I was having hard heart beats.
Occasionally, if I'm really tired, it'll have the same reaction but it's not constant, thank goodness. More later, this is enough to read at one sitting! Martha W from Texas. email@example.com
Martha W, June 15, 2006 - Hi everyone, When I first was diagnosed with CHF I wasn't working. My husband and I live on a farm and it was all I could do to keep up with the chores. I ran a goat dairy for 24 years. I'd gone to the hospital "just" to have a heart cath done and it was a week before they could get to me. The real reason was the doctor wanted to keep me lying still and draining fluids rather than trying to maintain an outdoor lifestyle. After we decided to go with the pacemaker, the day I came home from having it done, I milked 26 goats before I even hit the house! I realized then that I'd have to sell the herd or my tombstone would read, "She isn't here, she's milking the goats."
I started working as a cook in a resort restaurant (big mistake). I physically couldn't work 40 hours on my feet, hauling heavy trays of food. Plus, I don't care how little you eat when you cook for the public, you're going to gain weight. I was also doing some computer work for a friend at night.
Since then I've taken a job at A&M University (more computer work), which is nice because my husband works here too. We have an hour drive each way so I'm away from home 11 hours every day at least. I also raise Paso Fino horses, 8 mares (only 2 under saddle) and a paint stallion. Since I've started this job, the horse breeding program has been on a back burner. I don't see myself training young stock, going to work and dealing with my medical problems.
For the past year or so I've felt okay and let myself run out of my prescriptions, taking my meds ho-hum and now I really need to get back into a good regime of caring for myself.
One area that I haven't seen addressed here is our spouses. My husband really doesn't think there is much wrong with me. When I have difficulty going up and down the stairs to the house, he thinks it's just because I don't exercise enough. If I walk a mile to go get the mail, he thinks I should have jogged. If you're healthy and physically fit, it's very hard to envision what a struggle it is to catch your breath after just putting away a bag of horse chow.
Oh and he smokes, making it even harder for me to catch my breath. I've shown him stats on secondhand smoke but I haven't found anything on second hand smoke and its relation to cardio-compromised individuals. Does anyone have anything I can point him to? Thanks, Martha. firstname.lastname@example.org
Pat Y's June 15 reply to Margaret D's June 14, 2006 - Hi everyone, Just a comment about doctors. The cardiologists and I have made plans to bypass the hospitalists who oversee care of all patients in the hospital. Like my PCP said, someone that doesn't know me can easily kill me. For some reason my body does not like many medications. As an example, years ago a one-tablet simple antihistimine put me to sleep for 36 out of the following 48 hours - my friends thought I was drunk. That was before CHF. The same problem with medications continued after diagnosis. It took time to get the cardiologists to really listen to me.
Yes, I value the education and expertise of our medical doctors but they in turn need to listen to me about the effect medication has on my body. I live in my body and know how I feel. I believe that medication can - but not necassarily - causes various problems. I am not a medical person but was raised around the medical community and have worked in hospitals because of my profession.
Remember: A bunch of us sending $5 a month can really help this site stay up and going. I put a figure in my budget and mail that amount every month. The education I receive is well worth the monthly donation. PTYoumans@aol.com
Donna V, June 15, 2006 - Hi all, Because I have a newly discovered dilated ascending aorta (the aneurysm word), which apparently has nothing to do with my CHF, my cardiologist sent me to a rheumatologist. My cardiologist suspected that Marfan's Syndrome might account for the dilated aorta. The rheumatologist ruled out Marfan's but got into my aging and aching joints. It was no surprise that he said I have osteoarthritis.
This doc is aware of my CHF and the meds I cannot take. He was really in tune with the whole picture and spent a whole hour with me! He has given me Limbrel, a prescription dietary supplement, to try. It is not supposed to have an adverse affect on those of us with CHF. Does anyone else take Limbrel and if so, are you noticing any positive effects? Are there negatives to Limbrel? The osteoarthritis seems a minor thing to handle at this point in the CHF game. Thanks, Donna V. email@example.com
Jon's note: Please note that technically Limbrel is a medical food, not a dietary supplement. Crazy, ain't it?
Miranda W, June 15, 2006 - Hi, I'm feeling depressed because my brother, who was diagnosed with CHF about 3 years ago, is being groomed by his wife into thinking he's on borrowed time and should be dead within 2 years. She told me exactly how much money she's going to get, and was lamenting about not wanting him to die, yet I get the feeling she's waiting for it to happen.
She moved out last fall for about 4 months, then came back. It just seems like she's waiting for him to die and she's convinced him he's going to die within a couple years. I read about the ejection fraction. His was 14% when he was diagnosed but now with meds it's been as high as 45%. He tires easily and doesn't have the energy he used to, but he's also overweight and he drinks - behaviors that I don't think he would do if he felt he had any hope, but he isn't getting any from his wife. Is having CHF and being on meds for it a situation really as dire as his wife is telling us? firstname.lastname@example.org
David W's June 15 reply to Michele F's June 14, 2006 - Hi Michele, I stopped taking digoxin a couple of years ago. I was getting awfully tired after exercise and my cardiologist said it may be the digoxin. I stopped the digoxin and got better. I also felt crappy on the ACE inhibitor lisinopril. It made my blood pressure go too low. I stopped these two meds and felt better. I had a dual chamber pacemaker put in last week and that is really helping. I can't really tell it is doing anything but I am not as tired.
I work part time and yesterday someone called in sick and I covered their shift plus my own shift. I worked from 11:00 AM to 11:30 PM. I am tired today but not overly tired. I don't think I could have worked that long without the pacemaker. The pacemaker surgery was not bad at all and I would urge anyone thinking about getting a pacemaker to have it done. I think it could help you a lot although there are never any ironclad guarantees. I just feel it is helping me and it has only been a week. I now feel like I may have a future where before I felt like I was lucky to make it from one year to the next. email@example.com
Martha W, June 15, 2006 - Hi, I saw a Fox newscast (Dr. Rosenthal's segment) about a fairly new weight loss pill called Accomplia (Rimonabant). It works on the brain when it kicks in and tells you, "I'm hungry, I need to smoke, I need a drink." The FDA approved it late last year for weight loss only. I've asked my cardiologist to check into it to see if there are any adverse reactions when taken in combination with my other medicines. His nurse (a smoker) was very excited when she read the reports. My question, has anyone else taken this? Is it useful at all? Are there any contraindications? Thanks, Martha. firstname.lastname@example.org
Jon's June 15 reply to Martha W's June 15, 2006 - Hi Martha, As far as I can tell, this is not yet an FDA-approved drug. The FDA refused this February to approve the drug until some side effects issues were ironed out. Users had increased risk (almost 3 times more than placebo patients) of anxiety and depression, among other things. The FDA committee that would recommend approval has canceled their summer of 2006 meeting so they will not formally meet again until November of this year.
If my info is wrong, someone please correct me. If someone on Fox tv said it was FDA approved, I believe they are wrong - it is not in the FDA database as an approved drug today. The drug is in ongoing phase 3 trials in patients with diabetes (SERENADE), bad cholesterol levels (ADAGIO) and heart disease (STRADIVARIUS, AUDITOR, CRESCENDO).
The drug shows promise because it improved cholesterol levels and reduced weight but remember that these trials are using obese patients and they only lost an average of 20 pounds on the highest drug dose so far. In a very fat person, it's just not that much, so while this may turn out to be an important drug, it won't make you thin. Jon.
Mary C's June 15 reply to Jon's June 14, 2006 - Hi, I was on 50mg of Toprol-XL and switched to Coreg at 3.125mg by the emergency room doctor and my second cardiologist. I only took one dose of the Coreg per my primary care doctor, because of the terrble chest pain. The emergency room doctor and my second cardiologist conferred and switched me to the Coreg at that dose on 12/31/2005.
The next day after my husband and primary care doctor prayed, I was put back on the Toprol-XL at 50mg by my primary care doctor. Then I started to wean off it. The third cardiologist told me not to wean but to just switch to the diurectic. I got sick so I knew to follow my regular doctor's advice on this. This is why I am now looking for a new cardiologist who will listen to me and understands CHF. Am I making sense? MHCarrs@aol.com
Jon's note: Yep, that makes sense to me.
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, 2006 Jon C.