The paperwork never ends The Archives
July 1-15, 2006 Archive Index CHFpatients.com

David W's 7-3 reply to Faye B's 6-30     low blood pressure experience
 
Mary C's 7-3 reply to Rebecca J's 6-30     doctor possiblities
 
Mary C's 7-3 reply to Mike H's 6-30     depression and anxiety
 
Mary C's 7-3 reply to Sharmesa W's 6-30     coping
 
Audrey R 7-3     does anyone get "painful veins?"
 
David W 7-3     seek pacemaker/ICD experiences like this
 
Cary D 7-3     seek DHEA experiences
 
Lowell P 7-3     treadmill stress test question, blood pressure
 
Jon's 7-3 reply to Lowell P's 7-3     treadmill stress test, blood pressure
 
Mary C's 7-5 reply to Jon's 7-3     treadmill stress test vs persantine version
 
Jon's 7-5 reply to Mary C's 7-5     treadmill stress test vs persantine version
 
Mary C's 7-5 reply to Audrey R's 7-3     letting go of some things, grabbing others
 
Tom S' 7-5 reply to David W's 7-3     pushing your limits may not be wise
 
Gopal A's 7-5 reply to Mary C's 6-14     diastolic heart failure experience
 
Linda K 7-5     fluid retention and stomach symptom questions
 
Jon 7-5     mailing list and The New Page
 
Scott B's 7-5 reply to Linda K's 7-5     fluid retention and diuretics
 
Scott B's 7-5 reply to David W's 7-3     pushing your limits, ICD programming
 
Mary C's 7-5 reply to Jon's 7-5     stress test info makes sense
 
Mary C's 7-5 reply to Gopal A's 7-5     coping
 
Mary C's 7-6 reply to Scott B's 7-5     retaining fluid
 
Mary C's 7-6 reply to Jon's 7-5     newer beta-blockers and asthma
 
Jon's 7-6 reply to Mary C's 7-6     newer beta-blockers and asthma
 
Mary C's 7-6 reply to Gopal A's 7-5     what kind of healthcare system are you using?
 
Martha W 7-6     health insurance program question
 
Martha W 7-6     web site has helped me, EF update
 
Norma W 7-6     heart class and echocardiograms
 
Jon's 7-6 reply to Norma W's 7-6     heart class and echocardiograms
 
Valerie R 7-8     is drinking coffee all right with HF?
 
Mary C's 7-8 reply to Jon's 7-6     all kinds of heart failure
 
Giorg 7-8     seek experiences with atrial enlargement
 
Gopal A's 7-8 reply to Mary C's 7-6     yes, I live in Canada
 
Ladell M 7-8     seek EECP experiences
 
Stephanie H's 7-9 reply to Martha W 7-6     health insurance program experience
 
Roger H's 7-9 reply to Linda K's 7-5     weight gain and fluid retention
 
Jon's 7-9 reply to Linda K's 7-5     weight gain and fluid retention
 
Jon 7-14     chronic fatigue
 
Scott B's 7-14 reply to Norma W's 7-4     heart class and test results
 
David W 7-14     pacemaker caused hole in heart experience
 
Martha W 7-14     seek chelation experiences
 
Jon's 7-14 reply to Martha W's 7-14     chelation
 
Martha W's 7-14 reply to Stephanie H's 7-9     thank you for the information
 
Carol G 7-14     seek info on mm2 results
 
Jim R 7-14     update after device implant
 
Mary C's 7-15 reply to Dilip K's 6-26     different medical approaches
 
Martha W 7-15     seek ideas for friend with cancer
 
Mary C's 7-15 reply to David W's 7-14     you've dealt with a lot
 
Roger H's 7-15 reply to Martha W's 7-14     chelation experience
 
Sandy N's 7-15 reply to Jim R's 7-14     implanted device experience
 


David W's July 3 reply to Faye B's June 30, 2006 - I had a lot of problems with low blood pressure after I had my gastric bypass surgery in 2003. I reduced the dosage of my ACE inhibitor lisinipril and eventually had to stop taking the ACE inhibitor as every time I took it even at doses as low as 2.5 milligrams my blood pressure would drop way too low and I would pass out. Coreg lowers blood pressure also but I know I need the Coreg so I only dropped the ACE inhibitor. That worked for me but check with your docs.
     My docs did not advise dropping the ACE inhibitor I just told them I am not taking it anymore as I injured myself when I would pass out. For the person with blood sugar problems, Coreg can raise your blood sugar. I became diabetic because of taking Coreg, but Coreg helps me more than it hurts me. Since losing all the weight, I am not diabetic anymore, but one of Coreg's many side effects is that it raises blood sugar levels. Coreg can cause problems but in my opinion it helps enough to put up with any side effects. wilsond537@aol.com
 
Jon's note: People with low blood pressure should consider switching to Toprol-XL as well. See www.chfpatients.com/archives/archive2-2006a.htm#Jon2-1.


Mary C's July 3 reply to Rebecca J's June 30, 2006 - Hi Rebecca, try http://cardiology.ucsf.edu/people/index.html - one of these doctors is a specialist in CHF caused by chemo; I can't remember which one. That page links to their individual e-mail addresses. Good luck. MHCarrs@aol.com


Mary C's July 3 reply to Mike H's June 30, 2006 - Hi Mike, As you know, one of the side effects of beta-blockers is depression. Depression is sometime expressed as anxiety. I am very sensitive to medications so when I start a new med I always take half the recommended dose for awhile by itself. My PCP agrees with this, he says I know my body best, so ask permission first. I take new meds with food unless it says do not take with food and that way if I start new side effects I usually know which one triggered it.
     When I was on Toprol-XL (a beta-blocker), I got really depressed. If I didn't have to go off of it because of asthma, I was going to ask for a antidepressant. I don't know about you, but I am tired of feeling sick and I sure don't need depression or anxiety along for the ride. MHCarrs@aol.com


Mary C's July 3 reply to Sharmesa W's June 30, 2006 - Hi Sharmesa, Sometimes I will feel like that if I get up too fast. My heart is trying to compensate for the sudden movements. If you are atlethic and are in the process of exercising and pushing yourself physically, your heart may be trying to compensate. I know it is hard to control the salt, the low sodium section really can help.
     The extra sodium is very hard on our hearts in the long run. I used to feel very well, and I just felt like I could eat like I was normal. I had palpitations and arrhythmias and I just blew them off, first because my doctors didn't make a big thing out of them and also because I wanted to eat normal foods. I don't mean chips, just regular foods cooked with table salt. Well now, because I didn't pay attention I am struggling with a bigger problem and I have become very sodium sensitive.
     I believe we need to pay attention to the feelings in our bodies - but not be overwhelmed by them. We all need to find a balance between the two. Our bodies will try to warn us of physical decay and they will compensate for the physical decay. Eventually, the body is is unable to compensate without medical intervention.
     Get a good CHF doctor, have him advise you. Go to cardiac rehab and learn how to adapt to the changes in your heart. They will have you exercise while hooked up to telemetry. They will be able to tell you what your heart can handle and what strains it. A good goal would be to preserve the level of health that you have now. When one become disabled, almost everything else goes on the table. Take care of yourself. Don't get scared. Don't do the ostrich thing, it never works. Knowledge empowers! MHCarrs@aol.com


Audrey R, July 3, 2006 - Hi, I hope all are well, well as we can be. I occasionally have a warm kind of burning in my veins, or what feels like my veins. Does anyone ever experience this? I have noticed the last two evenings that my right side of my neck kind of feels warm, ouchy, like the carotid artery or something. It's hard to explain but it feels like my veins hurt. I have looked in the mirror and nothing seems different. My neck is not distended or swollen.
     The last few days I have been doing things I probably shouldn't be doing like moving furniture, etc,..., trying to get a little more order in my home. I don't really have anyone who can help me much and quite frankly I have never been good about asking for help. At times things need to be done and so I do them. I have an 11 year old daughter who is helpful but she can only do so much.
     I am hoping this feeling of "painful veins" is not related and that I don't need to be real concerned. Is this a normal symptom? I have learned to pace myself a little better but don't y'all get frustrated with not being able to do things? I have always handled whatever I needed to and this just is a hard one for me. Am I hurting myself when I overdo a little? audrealayna@yahoo.com


David W, July 3, 2006 - Hi all, I had a rough weekend. My pacemaker/ICD kept giving me problems. I had been great until Saturday. I ended up in the emergency room last night and they checked the pacer and my heart out. They said it was probably just my body deciding there was something foreign in me and not liking it. Maybe today it will go away. They said it almost gave me the big shock three times but aborted them. I am glad as they say it is liked being kicked in the chest by a mule.
     I guess I overdid it Saturday. It was so busy at work I had to stay from 11:00 AM to 10:30 PM, which is pretty long and I had some huge orders to deliver. I sold almost 800 dollars worth of pizza, which is quite a lot of pizza and Italian food to carry to people. Luckily I had the weekend off and go back to work today so hopefully it will be okay.
     I go to see my cardiologist on Wednesday morning for my first check up. Before the pacer I just would have been totally exhaused and rest was all I would need. The pacer does give me more energy as I am not that tired anymore. I guess I just have to learn how to live with this pacemaker. They gave me a St. Jude dual chamber pacemaker, which I guess is the latest and best available.
     Has this happened to anyone else with a pacemaker/ICD? wilsond537@aol.com


Cary D, July 3, 2006 - Hello, I am contemplating taking 50mg of DHEA on a daily basis. I have read many articles on the pros and cons of DHEA. Having been diagnosed with CHF three years ago, I have been taking various supplements and feel that without these supplements I would not have achieved the ability to cope physically on a daily basis. Has anyone taken DHEA, and if so, what are your thoughts? Thank you. Cdeen10@hotmail.com


Lowell P, July 3, 2006 - Dear Jon, I have been taking 75mg of Avapro in the PM and 50mg of Toprol-XL in the AM. My blood pressure has been around 140/80. I suggested to my doc that I thought it was too high. He suggested increasing the Avapro to 150mg from 75mg. I find that it really hasn't changed my daytime blood pressure. It seems to me that I should increase my blood pressure medicine for my waking hours by taking the Avapro in the AM and the Toprol-XL in the PM. I also was told by him some time ago that he thought I should take a treadmil stress test but he is now discouraging it. How important is this test? I like this guy but am losing confidence in some of his judgements. Maybe I'm wrong. Your opinion please, Jon. Thanks, Lowell. Lpepper3m@aol.com


Jon's July 3 reply to Lowell P's July 3, 2006 - Hi Lowell, Do you take Toprol-XL instead of Coreg for a specific reason? I can't remember. Coreg will lower your blood pressure more than the Avapro or Toprol-XL, because it is also an alpha-blocker. Also, is there a reason why you take only 50mg of Toprol-XL? Target dose is usually 200mg once a day. If it doesn't cause you problems, I'd suggest also that you take your Avapro and Toprol-XL together or 2 hours apart in the morning.
     A treadmill stress test has only one real purpose and that is to help decide if your risk of having blocked coronary arteries is high enough to do a cath. If your risk factors are high enough for the chance of coronary artery blockage you should have the test, otherwise probably not. Such risk factors would include family history of heart attacks, fainting spells, being considerably overweight, chest pain, poor blood cholesterol and triglyceride level, smoking, chronic high blood pressure, etc.
     Did your doc ever evaluate you for a BiV pacer? Again, my memory fails me. Jon.


Mary C's July 5 reply to Jon's July 3, 2006 - Hi Jon, They wouldn't give me a treadmill test because if it provoked an MI. They couldn't abort the MI as well as they could a persantine test; with persantine they can give an antidote. I was wondering which is safer, a treadmill or the persantine when evaluating for arterial blocks? The persantine stress test when I had it was aborted because it did provoke MI symptoms. They used the counteragent and my symptoms stopped within 2 minutes. Are they able to abort an MI caused by a treadmill? Is there a counteragent or do they just treat you for a MI? I may have to do another cardiac stress test at UCSF when I go and I was just wondering. I was having angina back in November and still do if I don't watch my stress and salt exposure. MHCARRS@AOL.COM


Jon's July 5 reply to Mary C's July 5, 2006 - Hi Mary, I don't think they are stopping a heart attack when they give you aminophylline. Persantine (cardiolite, etc) stresses the heart a great deal and causes heart attack symptoms before a heart attack actually begins happening. Aminophylline is used to stop the effect of the persantine, which stops the symptoms; that way a heart attack never happens. If you had an actual heart attack during either test, it could not be stopped as far as I know. If you had an MI during a stress test (which happens but is rare), I would guess the treadmill to be more dangerous simply because you might fall on a moving tread. However, my personal belief is that treadmill exercise is less likely to cause an MI than a chemical like persantine. I can't back that one up, just an opinion.
     I've had both treadmill and chemical stress tests and I'll take the treadmill version over the chemical one anytime. <g> You should get the chemical stress test only if you cannot walk long enough to get results on the treadmill, so "safer" doesn't really enter into it. If you have suspected CAD, you probably should have a stress test since a cath is really the only other current option. Which stress test you get depends entirely on your ability - or lack of ability - to exercise. Jon.


Mary C's July 5 reply to Audrey R's July 3, 2006 - Hi Audrey, Read the exercise section. We do need to pace ourselves, even on good days. I know what you mean about a messy house. I have had to lower my standards and settle for a much more comfortable house. It is more important for me to be here to take care of my kids over the years than for my house to be cleaner. My kids are only with me a short while and housework will always be with me. I may not see my grandkids or labor sit with my daughters but I can be here now, all of me. They will remember I spent time with them reading a book, or taking them to a movie. They are not going to remember how nice the furniture was or how neat I kept the books.
     On my good days, I'd rather take my walker and go to the zoo with them and see the bird show or take them shopping for their girl things. That to me is where I want to spend my energy. The house will always be there but I won't and neither will they. They will remember how I was saving up for a comfortable recliner for myself and how I spent the money on our sick dog instead so she could have surgery and save her life. They will remember that more than the twin bed I use in the living room for a couch. It is so important to make positive memories for our children, to help them understand our limitations and to help them to learn to ask for help. What an opportunity to teach them life lessons. MHCARRS@AOL.COM


Tom S' July 5 reply to David W's July 3, 2006 - Hi David, It seems to me you are insisting on pushing the envelope so far that it is going to burst. Take the 3 near-ICD-shock episodes as fair warning that you are pushing yourself too hard. There are people on this forum who have extended their lives by years by knowing their limitations. There are several I can think of, like you, who ignored advice to limit their work and activities, and are now dead and buried.
     It's a simple choice. I am sure the pizza joint you work for can replace a deliveryman in short order, I am not so certain your family can replace you. Think about it. bigheart@muchomail.com


Gopal A's July 5 reply to Mary C's June 14, 2006 - Hi Mary, I am also diagnosed with DHF, with general complaints of edema and pulmonary pressure. My problems started in late 2004 with angina and I was found to have 90% blockage in my LAD and D1. I went through angioplasty for my proximal and mid-LAD. D1 was opened to 70% as they could not enter this artery. Everything was smooth till December of 2005 when I had shortness of breath at night and could not sleep.
     Stress echo and thallium stress tests were normal with EF of 61%. I was told by my docs to forget the issue. As problems continued, I went through a cath which indicated that everything was normal except for an elevated left ventriculat end diastolic pressure, which stood at 25 mmHg against the normal of 7 to 12 mmHg; it was 12 mmHg in August of 2004. My echocardiogram showed a normal-sized heart, pulmonic pressure of 40 mmHg with mild degenerative aortic valve. I continue to have fluid retention, which goes to my abdomen and lungs. I have been prescibed an ACE inhibitor, calcium channel blocker, beta-blocker, potassium, Imdur and diuretics.
     Initially I was started with hydrochlorothiazide and when the maximum dose stopped working, I was switched to Lasix. I still get bad spells and my weight goes up. Last week I had to visit an emergency room due to the ineffectiveness of Lasix at 160mg. I was put on IV diuretics and lost 12 lbs. I am going to see my cardiologist to seek a change in medication. Which diuretics are you on? Keep in touch. gopal.ahuja@canada.com


Linda K, July 5, 2006 - Happy 4th everybody, I've got some fluid questions for you all. How much excess fluid does it take to produce symptoms? Have any of you found that you are sensitive to very small amounts, like 2 or 3 pounds? Is it normal to have shortness of breath even when the doctors tell you your fluid is normal? I'm having a devil of a time keeping my weight steady since my last trip to Club Med and even though it's only 2 to 3 pounds and they don't see any problems, I could swear that my symptoms are much worse on the days that I'm heavier.
     Also, does anybody else have abdominal symptoms? I get these really creepy shivery sensations, mostly around my liver, but sometimes around my heart and especially when lying down. I seem to be hungry all the time. It feels better for awhile after I eat but then about 15 to 20 minutes later it all turns sour. lindakasunick@adelphia.net


Jon, July 5, 2006 - Hi everyone, I just wanted to mention that if you're not on the mailing list, you should subscribe at chfpatients.com/lists.htm since I have it moving again. Also, if you haven't checked out The New Page lately, you should do that too. See chfpatients.com/new/new.htm. Jon.


Scott B's July 5 reply to Linda K's July 5, 2006 - Hi Linda, An extra 2 to 3 pounds of weight is plenty of fluid retention to experience shortness of breath. You are not imagining it. Do you take a diuretic every day? Perhaps you need to take the same total at more frequent intervals (instead of 120mg once, take 40mg 3 times a day).
     If you want to get scientific about this, you can do what the hospital would do. Measure all fluids going in and all coming out. This can help you judge how effective your diuretic is working. Perhaps you need to take more. At the same time, diuretic use can make you feel lousy because of electrolyte depletion. Make sure you keep your potassium up - have it checked through blood testing by your doctor. I wonder if that is linked to your shivery sensations? Best of luck with this. Scott Brown. scott.brown@sunlife.ca


Scott B's July 5 reply to David W's July 3, 2006 - Hi David, From a clinical perspective, I am right on the borderline of needing a pacer. My EF is currently at 31% and was 23% before meds at the time of initial diagnosis 5 years ago. I live an extremely active life style and I have young kids (9 months and 3 years). Sometimes you do not have the option of not "pushing the envelope" a little.
     When speaking about an ICD, we talked about how ICDs recognize certain patterns which they use to determine when it should zap you. These ICD's are only as good as their programming, which can be adjusted. Sometimes the ICD can think you are in trouble when you really are not; this, like everything else, will improve over time. A good electophysiologist can help tune the parameters to ensure your ICD is not triggered by a false positive.
     You are the best judge of how well you are coping. If you are feeling dizzy, sick to your stomach, extremely fatigued, have chest pains, etc,..., you need to rest. Everything has reasonable limits. Good luck. Scott Brown. scott.brown@sunlife.ca


Mary C's July 5 reply to Jon's July 5, 2006 - Hi Jon, That makes a lot of sense. Thanks. MHCarrs@aol.com


Mary C's July 5 reply to Gopal A's July 5, 2006 - Hi, It's nice to meet you Gopal. I am on hydrocholorothiazide at 12.5mg. I am unable to take more as it gives me angina. I have had adverse reactions to Cozaar, Toprol-XL, Cardizem LA, and some other drugs so my PCP is going slowly. My problems started when I had an x-ray for asthma and pneumonia in 5/2005. I just never recovered and the x-ray showed a big heart so I asked my PCP for a cardiologist followup like 7 months later, because I wasn't feeling right.
     Through other tests they are finding more stuff wrong with me. I have no blockages in my arteries or heart. They don't know why I had 2 MIs and so they are unable to show me how to prevent more. Cardiologist number one had me discharged during a TIA because he wanted to do a chemical stress test in his office. The emergency room doctor wanted to keep me, but his hands were tied. Now I know I can fire any cardiologist in the ER from my care. I can even ask for a different ER doctor or ask to be transferred to a different ER in town. I can fight for treatment.
     Cardiologist 2 told me to keep having the small MIs so that I could kill off that small part of my heart that was giving me problems. He even told my ER doctor to stop treating me so I could go home and have the small MI and kill off that part of my heart - no kidding. So with major chest pains I was discharged from the ER.
     I found another cardiologist, my third and am in search of a fourth cardiologist who will be able to diagnose and treat what is wrong with me. I will keep looking until I get some relief. It's no fun, and expensive, but at least it keeps me busy. My EF is 68% but as you know, it is normal to have a good EF with DHF. I am having my PCP referr me to the University of California at San Francisco (UCSF) and am waiting for the insurance to kick in. I also have ask my PCP to find me another cardiologist in town who knows about heart failure. My PCP thinks that because my BNP is low, I don't have heart failure but as you know, a BNP is only a screening test. Anyway, I hope I answered all your questions.
     I have really cleaned up my diet and through that have lost a lot of water weight. I am just starting to pace myself with exercise. I am learning to listen to my body and raise those swollen ankles before the skin splits. I am learning new recipes and I am setting up my house to stay cleaner. Jon's site and all of you have shown me how to extend and live a better life. I am learning how to rest and how rest can extend your quality of life. It's nice talking to you, Gopal. MHCarrs@aol.com


Mary C's July 6 reply to Scott B's July 5, 2006 - Hi Scott, I agree. I feel horrible when I carry a extra 2 to 3 pounds of water weight. My heart is working hard already. It doesn't need 2 or 3 pounds more to pump. Think of it as lifting weights. When you are used to pumping a free weight of 2 pounds, then increase to 5 pounds and your arms can really feel that change. You will be sore for a couple of days. Now exchange that for your heart. Your arms can rest in between but your heart hopefully just keeps pumping and may take awhile to recover from all the hard work of extra fluid pumping. I should know, I went through that 2 weeks ago and I am just now starting to feel normal. Sodium is what caused it for me. mhcarrs@aol.com


Mary C's July 6 reply to Jon's July 5, 2006 - Hi Jon, I like the New Page. You have been busy. Nebivolol sounds exciting. I was wondering, have you seen any article on how it may react with people who have asthma? Any European studies on that? mhcarrs@aol.com


Jon's July 6 reply to Mary C's July 6, 2006 - Hi Mary, The New Page has been around quite awhile, actually. I just wanted to let everyone know there was more new information there than usual, especially since some of it applies to diastolic heart failure and lots of readers here have that type CHF.
     There is no beta-blocker in sight that will be friendly to asthma patients. Nevibolol is no exception, although, like Toprol-XL it should be slightly better for asthma sufferers than Coreg. Jon.


Mary C's July 6 reply to Gopal A's July 5, 2006 - Hi Gopal, I have been thinking about you. I remember this from your post: "I was told by my docs to forget the issue. As problems continued,...," Are you from Canada? If you are, don't you have socialized medicine? I am just not up on this stuff but my friend whose mom lived in Canada was refused medical treatment for cancer because of her age. My thought was, you more than us will have to fight to receive the right medical care or else they can put you off quite a bit and just give you the basics to keep you alive but not thrive. Is that why they put you off? mhcarrs@aol.com


Martha W, July 6, 2006 - Hello all, My insurance carrier all of a sudden called yesterday evening with a "new program" for people with a heart condition. I'm not sure I like them giving me advice. If I don't take it, am I at risk for voiding any future claims I may need to have due to my CHF? The nurse is going to call Friday to discuss my medications with me. I know my benefits package is going to go up $27 per month for medical insurance only. I think they're trying to make me think I'm getting special treatment so I won't choose one of the other plans available to me. How do I say no thanks nicely to all this new medical attention?
     I do intend to contact my heart doctor to find out if this company has been in contact with him, and how much information his office released and how much I should be releasing. Anything more than none makes me nervous in this day and age. Martha. mwells@ppfs4.tamu.edu


Martha W, July 6, 2006 - Hi all, I finally got curious enough to call my doctor's office to find out my EF. In November of 2005, it was 20%. When I first went to the doctor in 2002, it was 10 to 15% and later that same year on medication alone, it was 15 to 20%. I've scheduled an appointment to have my ICD checked and get a new reading because I feel like it's fallen below the 20% again.
     Thank you Jon, for developing and maintaining this web site. I would never have known some of the questions to ask, nor why my medications may be having the effects on me that they do. Martha. mwells@ppfs4.tamu.edu


Norma W, July 6, 2006 - Hi everyone, My cardiologist advised me yesterday that I was back to a class 4. This had been upgraded last year to between classes 3 to 4. I had an echo two weeks ago and she is basing her findings on this. Now, my question - I can walk a half mile easily with no shortness of breath. I do not suffer faintness and have had no episodes this year of racing pulse. In other words, I feel the same as I have for the past few years.
     If Class 4 means the worst possible, how come I can manage so well and have for nine years? When I asked the cardiologist this question, she said some Class 4 patients had absolutely no symptoms at all, while some Class 2 could hardly move from their beds. This doesn't make sense to me. Sure, I get fatigued at times and have the energy of a newt on some days, as all CHFers do, but on the whole I live a normal life.
     I am beginning to believe that echocardiogams are of little use and one should depend more on how one feels physically. Gloom and doom from every cardiologist I have seen since 1997 certainly has not helped my mental state! Regards to all. Norma W. normadroz@aol.com


Jon's July 6 reply to Norma W's July 6, 2006 - Hi Norma, Functional heart class has absolutely nothing to do with echocardiograms or anything they can measure. Heart class is based entirely on how well you function every day. See chfpatients.com/CHFinfo.htm#classes. I don't know what your doctor is talking about but maybe you need to discuss this with her to see if she understands the functional heart class system. If she doesn't, you need another heart failure doc, that's for sure. Jon.


Valerie R, July 8, 2006 - Hello, What is the latest on CHFers drinking coffee? Did I recently read that it's okay? Some doctors say it is and others say it isn't. Val. vgrogers@aol.com
 
Jon's note: I assume we're talking about decaf here, since caffeine speeds up heart rate and thus reduces the effectiveness of our meds.


Mary C's July 8 reply to Jon's July 6, 2006 - Hi Jon, Thank you for all your hard work for those with DHF like me and the others. I know you have systolic HF. It is nice that as a moderator you are treating us all the same. That is a lot of hard work. I appreciate any new info. I am sorry to hear about beta-blockers not good for us with asthma. Oh well. mhcarrs@aol.com


Giorg, July 8, 2006 - Hi all, I am writing again about atrial enlargment. My last echo showed severe left atrial enlargment and moderate right atrial enlargment. So atrial enlargment is worsening compared to the echo I had one month ago in which left atrial enlargment was moderate and there was no right atrial enlargment. My ventricles and EF are stuck at the same point, luckily. I do not know whether I should worry or not.
     My cardiologist thinks that I should not worry since atrial enlargment maybe is temporary and due to fluid retention. He thinks that I have to lose 5 pounds because I am a bit swollen on my abdomen and my pulmonary pressures are higher. Also, blood tests showed liver congestion (bilirubin is high, around 2.5).
     Did anyone experience atrial enlargment and then have them return to normal size? Is that something that can really be related to fluid retention? giorgclunei@hotmail.com
 
Jon's note: Just a quick question - have you been diagnosed with pulmonary hypertension?


Gopal A's July 8 reply to Mary C's July 6, 2006 - Hi Mary, You are right. I am in Canada and our medical system is somewhat different from USA's system. One needs to adjust to the environment. Every system has some good and some bad points and no system is perfect. Cheer up. gopal.ahuja@canada.com


Ladell M, July 8, 2006 - Hi, I just found this site this evening. I am so glad. I have CHF. I have just finished the EECP treatment. Has anyone done this? If so, what type results have you had? ladellm8989@hughes.net


Stephanie H's July 9 reply to Martha W's July 6, 2006 - Hi Martha, My insurance carrier uses a company called Life Masters that helps to monitor and educate heart failure patients. I reluctantly (at first) participated in this program. It turned out to be a pretty good deal. A nurse would call every two weeks to check in, get your vital signs (we keep a daily log of weight, blood pressure, and pulse). They also have a web site where you can input this information. The nurse will always ask how you are feeling, if there are any changes since the last time, and always have a discussion topic (low sodium diets, exercise, etc.) It takes about 15 minutes. They also send a report to your doc.
     I found it to be very helpful, it was like a second set of eyes looking at my symptoms. I'm not sure how much information the insurance company releases. The Life Master's nurses do ask for your current meds but other than that, I don't recall them asking for any personal information. After one year, the calls are reduced to once every 3 months. When I was enrolled in the program I was newly diagnosed, so I was terrified and I thought, hey, why not give it a try? Good luck with your decision. howsares@saic.com


Roger H's July 9 reply to Linda K's July 5, 2006 - Hi Linda, Yes, 2 to 3 pounds can make a big difference! I have this certain weight - my doctor said I have a 4 pound window - and if I go too high, I start to feel tight in the chest and when I lie down my breathing is real raspy and also a lot of coughing and phlem. rkharmony@highstream.net


Jon's July 9 reply to Linda K's July 5, 2006 - Hi Linda, All the replies to your post have been on the money. My CHF doc is very specific. He says weigh yourself naked as soon as you get out of bed each morning. Any morning that you weigh 2 to 3 pounds more than the previous morning, take extra diuretic and extra slow-release (prescription) potassium. Discuss it with your doctor. Jon.


Jon, July 14, 2006 - Hi everyone, Maybe I contracted sleeping sickness or something, I don't know. <g> I've been so tired this week that I have slept up to 16 hours a day, and I have been too tired to function in my few waking hours. Maybe I'm coming out of it since I'm sitting here typing, I'm not sure. Jon.


Scott B's July 14 reply to Norma W's July 4, 2006 - Hi Norma, Unless I am missing something here, the New York Heart Association classes are (according to their web site) : "This system relates symptoms to everyday activities and the patient's quality of life." I don't think an echo is really going to change your heart class. It really relies more on how you feel during rest and exercise. Perhaps your cardiologist is using a classification which is based more on actual numbers (which relate to the class).
     It is entirely possible (and actually common) for your clinical diagnosis to be worse, while you feel better (and this often happens the other way around as well). One explanation for this is the fact you are in better shape, and therefore better able to cope with your symptoms. This is where exercise makes all the difference in the world.
     In short, do not bother getting hung up on your classification. Wouldn't it be worse to be called a class 3, but feel worse than when you were a 4? I think so. Scott B. Scott.Brown@sunlife.ca


David W, July 14, 2006 - Hi, This is an update on myself. At the emergency room on July 2, they told me I was okay and sent me home. I went to work on the 3rd of July. I passed out at work and had to be rushed to the emergency room by the emergency people. I did not know what was wrong but I felt lousy. The pacer/ICD kept giving me lots of little shocks. They investigated and told me the lead in the lower part of my pacer connected to the defibrillator had come loose and was causing the shocks because it was misreading my heart. This made sense and they said I would have to have a surgery to fix the problem and at first they said stay, then said send me home and finally decieded to keep me. It was like after 10: PM so I was so tired I did not care. They put me in a room but my left side kept hurting. They turned the lower part of the pacemaker off so it would quit hurting me.
     They then said my lung was full of fluid and they would drain it in the morning. I was okay but sore on the left side. The lung doc came to drain the lung but barely got started before he stopped. He did not get fluid but got some dark blood. He called the heart surgeon and she was stumped but said I had to have immediate surgery. This was on July 4. She was not sure what was wrong but needed to do exploratory surgery to find out what was wrong.
     I agreed as it sounded like I might not make it if they could not get rid of that blood and figure out where it had come from. She did open heart surgery and they found out that the lead had punched a hole in my heart and that is where all the blood came from. She fixed the hole in my heart and put in extra stitches. They said this is very rare after a few weeks. I am so lucky in having weird things happen to me. I got out of the hospital yesterday. They said this is just something that happened to me not because of work. Somehow after I was sent home Sunday night and when I passed out Monday afternoon the lead punched the hole in my heart. They kept the dual chamber pacemaker in me and decided to just turn off the ICD part and removed that lead. They said the bottom part of my heart was paper thin and that is why I had the problem.
     They left the pacer lead in the upper part alone as it was fine. Hopefully, it will still help me. God got me through this so I guess I will be okay; time will tell. I am just working because I felt so much better and I am so tired of sitting home. It feels nice to be useful again even if it is just delivering pizzas. I don't really think work was the problem. I don't know if I will go back or not. I am going to see how I feel.
     I will take 6 to 8 weeks to get over this anyway and let the incision heal up. I have never heard of anyone else having this kind of problem. I sure had the docs stumped for awhile. If they would have sent me home that Monday I probably would have just filled up with blood and died from the hole in my heart. The heart surgeon said I would not have made it much longer.
     I guess I will wait a few weeks and see how I feel. I hope the pacemaker was worth all the trouble I have gone through. Hopefully, I am just an oddball case. I hope this does not happen to anyone else as it is not fun at all. I am slowly on the mend for the second time this year. I am glad I am not a cat since I think I have had enough close calls and used up all my nine lives already. What happened to me was unlucky and unusual but not unheard of. It is less than 1% odds of that happening so I guess I was not stupid in having the pacemaker put in.
     I guess as time passes I will decide if it was worth it or not. I am trying to be positive because being negative does not help at all. I was a little depressed in the hospital but I am better now that I am home. My puppies cheered me up and I know there is some reason God is keeping me here although I really don't understand why. I guess it is not our time to go until God decides. My sister told me I just had too many people praying for me and that is why I am still here. Maybe so.
     I sure don't understand God lots of the time. I know He does all things good for us but that does not make it easy to understand why we have to go through some things. wilsond537@aol.com


Martha W, July 14, 2006 - I realize the site I read about chelation wants to sell a book on "natural cures" but has anyone heard of chelation therapy for heart disease? mwells@ppfs4.tamu.edu


Jon's July 14 reply to Martha W's July 14, 2006 - Hi Martha, I should point out that my own mom got heart disease while on regular chelation therapy for a different health problem. I have seen lots of "information" about this for improving heart disease but I have not seen reliable information yet on it. Of course, chelation therapy is done by IV and leaves you feeling rotten for a few days after each treatment as well - not a pleasant therapy even for its intended purpose, which is to remove heavy metal accumulation from the body. Jon.


Martha W's July 14 reply Stephanie H's July 9, 2006 - Thanks. I'm not so reluctant to discuss my medications and treatment with the insurance nurse now. Actually, they were supposed to call on Friday and never did. Maybe the first was a courtesy call and maybe I didn't sound very enthusiastic. Martha. mwells@ppfs4.tamu.edu


Carol G, July 14, 2006 - Hi, My husband's doctor said he has moderate to severe left atrial dilation, with the measurement being 36 cm2. Can anyone tell me what that is in mm? I do not understand that measurement form. Thank you very much. carolg200@mac.com
 
Jon's note: This is mm squared and is not usually used in most echo reports but may be seen in EKG reports or blood vessel cross-section measurements. See www.echobyweb.com/htm_level2_eng/normal_parameters_tt.htm for a good site on this sort of thing. I suggest asking the web master there for help understanding the report - he's very helpful.


Jim R, July 14, 2006 - Hi all, I just got home from Club Med with my new medtronic ICD/pacer and it was an easy trip. I do feel a little better. I am not quite as short of breath or as tired. I went to the Meijer Heart Center in Grand Rapids, Michigan. They treat you great there. The whole group is a fine bunch of people. It's the West Michigan Heart Group that did the implant and follow up. They answered all my questions and were great. Attitude helps. Jim R. jlr@mei.net


Mary C's July 15 reply Dilip K's June 26, 2006 - Hi, Look up the term "healing crisis". It happens to people who have been sick a long time then go through a sort of detox. You feel a lot worse before you feel better. See www.falconblanco.com/health/crisis.htm. Going on supplements too fast and without follow-up by a integrative physician can increase the symptoms of a healing crisis. This may have been what your mum went through. Ask the person who dispense the supplements.
     Like Jon said in his reply, go slowly. Also, find a medical doctor you can work with. I have a Christian PCP who practices intergrative medicine. It is a combination of allopathic and alternative therapies. He is very grounded. He also prays for me and is on my prayer chain. I have clean ateries, and low blood fats because he is willing to tell me to eat a whole food, organic diet. Drink clean water, and use an air filter. Still, he writes me a prescription when I need it and when he writes me one I take the med because I know he'd rather I not take meds unless I really need one.
     So find a PCP who knows what you need him to know for the better health of your mum. Balance is very important in medicine. Some even specialize in geriatrics. MHCarrs@aol.com


Martha W, July 15, 2006 - Hi, I received a call last night from the daughter of a friend. Penny (76 years old) used to live in a mobile home on my farm until diagnosed with stomach cancer. She's since gone to live with her daughter. They pulled a 25 lb tumor out of her intestines and said it had mestastitized into most of her organs.
     She was home taking chemo shots until the weekend of July 4 when she started having rectal bleeding. They rushed her to the emergency room and it was the doctor there who discovered she'd also had had a heart attack sometime in the fairly distant past. After angioplasty and echo and stress testing, it was determined she has a severe calcium blockage in her left ventricle but bypass surgery was not advised due to the severity of her other medical problems. A colonoscopy showed that because of the tumor, her colon had not been receiving adequate blood supply, which caused it to develop lesions on the outside and that was what had ruptured and bled out. She's on 14 day heavy duty antibiotics for that infection and is severely anemic.
     I was trying to think of something that might reduce the constrictions of her heart that wouldn't intefere with all her other problems. Martha. mwells@ppfs4.tamu.edu


Mary C's July 15 reply to David W's July 14, 2006 - Hi David, I am sorry to hear of all the horrible problems you have run into. I truly hope you heal quickly. Don't second guess any of your decisions, you made the soundest decisions you could with all the information you had. From reading your other posts I have always seen you as someone who has always fought for a better life. Read John 10:10. God is not tormenting you. Read Ephesians, and find out who is. MHCarrs@aol.com


Roger H's July 15 reply to Martha W's July 14, 2006 - Hi Martha, I am presently doing an oral chelation. I had to take a blood test costing 150 dollars US out of my pocket about a year ago. This is through the cardiologist. I take Chemet-5 capsules Monday, Wednesday, and Friday, 3 months on and one month off. My mercury was way up. Normal reading is 3 and mine was 43, way off the charts. The test showed all the heavy metal content I had. No big side effects and I don't really know if it is doing any good till I get another test. The capsules are paid for all except for the $5 I have to pay through the insurance. The first time I got them the pharmacy said I hope you have good insurance since the pills cose 580 dollars per 100! rkharmony@highstream.net


Sandy N's July 15 reply to Jim R's July 14, 2006 - Congratulations Jim, I'm so glad your implant went so well and I also wish you as much luck with yours as I have had with mine. It's been 7 months for me! bleuskiiisgrl@yahoo.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006 Jon C.

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