The paperwork never ends The Archives
September 1-15, 2006 Archive Index

Lisa B's 9-1 reply to Jerry C's 8-31     severe shortness of breath
Lisa B's 9-1 reply to Jerry C's 8-31     severe shortness of breath
Michelle A's 9-1 reply to Jon R's 8-30     Advair use
Rick W 9-3     what chance I'll get worse after this great improvement?
Mary C 9-3     update, finally good treatment!
Sandy N's 9-30 reply to Tamara C's 8-30     keep hope
Jon 9-7     sorry, some good news though
Giorg 9-7     update on transplant option and heart condition
Donna V 9-7     update on me and my dad
Jon R 9-7     it's a boy!
Zina S 9-7     how can I help myself come back?
Stephanie H's 9-7 reply to Deborah J's 8-23     a doctor suggestion
Debra S 9-7     Cleveland Clinic's site
Rich F 9-7     seek experiences with ICD testing
Eugenia R 9-7     why is EF better but I'm not?
Jon's 9-7 reply to Eugenia R's 9-7     why is EF up but I'm not?
Jerry B's 9-9 reply to Rich F's 9-7     different experience with ICD testing
Giorg's 9-9 reply to Rich F's 9-7     ICD testing possibilities
Debbie H 9-9     can Coreg pills be cut or broken in half?
Zina S' 9-9 reply to Jon's 9-7     HF cause, arrhythmia, doc and more
Jon's 9-9 reply to Zina S' 9-9     exercise, Bidil, headaches, docs and more
Tony M 9-9     web site that sells something for fibromyalgia
Lowell P 9-9     EF results, heat and water intake, proBNP
Sarah K 9-9     how do I combat this terrible thirst?
Jon 9-11     posts
Mary C 9-11     questions - event monitor and ACE inhibitor
Jon's 9-11 reply to Mary C's 9-11     event monitors
Gayle A 9-11     seek amiodarone experiences and alternatives
Spencer L 9-11     what to do if parents won't take me to a doctor?
Penny R 9-11     could this be heart failure? & more
Scott B's 9-11 reply to Sarah K's 9-9     could you be dehydrated?
Jon 9-14     what a life!
Bill H's 9-14 reply to Spencer L's 9-11     see a doctor
Tom S' 9-14 reply to Spencer L's 9-11     see a doctor
Linda K's 9-14 reply to Spencer L's 9-11     try a different approach maybe
Scott B's 9-14 reply to Spencer L's 9-11     walk-in free clinic maybe
Sandy N's 9-14 reply to Spencer L's 9-11     see a doctor
Sarah K's 9-14 reply to Scott B's 9-11     dehydration, diuretics, fluid intake restriction
Stephanie H 9-14     seek info on hot flash management
Holly M 9-14     seek ideas on improving diuretic performance
Debbie H 9-14     thanks for replies
Lynn G 9-14     shortness of breath is hugely distressing me
Clair W 9-14     seek Atacand experiences and more
Pete T's 9-14 reply to Rick W's 9-3     diet
Patrick H 9-14     seek ideas on weight gain
David W 9-14     seek opinions on docs in Michigan
Penny R 9-14     emergency room no help
Cary D 9-14     seek health insurance alternatives
Karen K's 9-15 reply to Cary D's 9-14     health insurance alternatives
Debra S' 9-15 reply to David W's 9-14     one opinion
Patrick H's 9-15 reply to Jon's 9-14     weight gain, test results
Jon's 9-15 reply to Patrick H's 9-15     weight gain, page updates

Lisa B's September 1 reply to Jerry C's August 31, 2006 - Hi Jerry, Any muscular problems? Muscle weakness or fatigue could possibly affect your diaphragm and account for the shortness of breath.

Lisa B's September 1 reply to Jerry C's August 31, 2006 - Hi Jerry, I just ran a few Internet searches on the meds you're taking. It seems that there may be some connection between the Vytorin and shortness of breath.

Michelle A's September 1 reply to Jon R's August 30, 2006 - Hi Jon R, I have had CHF for 14 years. I've been on Advair since it came out. Advair is meant to be taken every day at a specific dose (usually 1 puff twice a day). Taking fewer doses or not taking it every day won't help you at all. The drugs must build up and be maintained in your airways over time in order to be effective. It's not like albuterol, which is taken as needed - Advair is not meant to be an "as needed" medication. It's my understanding that very little of the meds are released into the bloodstream, although you need to be monitored because of your heart condition and because of the potential side effects of salmeterol.
     I have CHF due to severe heart defects and have had asthma all my life, so my situation is different from yours. I'm also biased. I love Advair and would never stop it, but you need to get with your doc and make a decision that's right for you. Good luck.

Rick W, September 3, 2006 - Hi everyone. First let me say that this site has given me a great deal of information on heart failure since I first started checking it out. It's been a great help. I was diagnosed with heart failure in early June. My EF was 10%, my heart was enlarged and my blood pressure was 220/160. I started taking Coreg, enalapril, Lovastatin, Norvasc and hydrochlorothiazide. My doctor suggested having a defibrillator implanted, but wanted to wait a few months to see if I improved. Obviously, I spent the summer in a paranoid and somewhat depressed state.
     Yesterday, I saw my doctor again for another echocardiogram. I was shocked to learn that my EF is now 60% and my was heart was back to its normal size. I still have some thickening of the heart, but the doctor was extremely surprised that I recovered so quickly. He thinks the medication, exercise, diet and my age (29 years old) had a lot to do with it.
     Anyway, my question is this. What are the chances of my condition worsening again? I'm staying on the medication and diet, but I was told I could now cheat a little more when it comes to certain foods. I'd really appreciate any info or similiar experiences. Thanks a lot! Rick.

Mary C, September 3, 2006 - Hi Everyone, Well, I have been doing what The Manual said. I am finally feeling better, with no more severe edema or SOB. I have more energy. I have a great CHF doctor now, and am on the right medicines, including an ACE inhibitor and Aldactone (spironolactone). They haven't given me a final diagnosis yet. They are doing a one-month event monitor and lots of monthly blood tests.
     Finally, someone following the CHF guidelines that Jon preaches on! So thanks Jon, I hate to think where I be without this web site. Thanks everyone for donating so it stays on the web. We who are unable to give a lot, know every bit helps.

Sandy N's September 3 reply to Tamara C's August 30, 2006 - Hi Tamara, Please don't assume it's the end for your mom. I too was in "end stage" and then had a pacer implanted. It truly gave me back my life. Give your mom some time to adjust to her new pacer and she might gain her energy back. My blood pressure is always around 97/59 or so. Don't let that scare you either. Once your mom gets able to do some exercise, she may have so much more energy. Go out each morning and walk with her. You both will have some great talks. Good luck to you both!

Jon, September 7, 2006 - Hi everyone, Sorry for the delay in posts. However, a series of injections have reduced my pain from a 9 Sunday to about a 2 today. It's nice to finally find a doc who listens to me and then actually does something about it. He even obliged me when I asked him to do all the shots in one visit. Apparently, most patients find one at a time a bit much. <g>
     I am way behind on posts and may take a awhile to catch entirely up since I have so many specialist's appointments scheduled, I have to now keep a list. I have one in just a few minutes, actually. On the up side, I should be able to sit and type longer now too. Jon.

Giorg, September 7, 2006 - Hey guys, the transplant team is not convinced I need a new heart so soon. They are discussing it because my Vo2max last week was 21.8, well above 14, which is usually the limit for being eligible. But that number is down from the 31.5 that I reached last year.
     Also one month ago my pro-BNP test was 4267 pg/ml. I think that is kind of a record! They are surprised that I am not out of breath with that BNP and with severe left and right heart failure. I suspect that the reason of my being quite fine with a so weak heart ( it pumps 3 liters/minute from the last cath to measure it) is L-Arginine and all the exercise I did over the last years. I am not sure that I should be happy of that - I mean, I am going down fast. Who cares if my Vo2max is not that bad?! The transplant team must consider me before I get so bad. My mom and my uncle went down in a few months and having a new heart is not a matter of days, usually.
     I wrote here some weeks ago about atrium size: For information of the forum, my left atrium size decreased, while I have increased diuretics and am keeping fluid intake to 500 ml/day. Also, my mitral regurgitation is better. I think atrium size and regurgitation are connected. I have no congestion now and fewer palpitations. I am weak though, and my blood pressure is low.
Jon's note: It must be murder keeping to such a strict fluid intake restriction! I agree Giorg that the transplant team should move faster due to your right heart pressures.

Donna V, September 7, 2006 - Hi Jon, As I was paying bills this afternoon I was appalled at how behind I was on a donation to this wonderful site. I've hardly had time to read the posts. My dad had another "mild stroke" July 2 and another "mild heart attack" in August. He spent his long planned 90th birthday party in CCU. His apartment has been closed, furniture dispersed, car sold and his life taken over by me. Between the 2 of us there were 4 doctor's waiting rooms last week. Doctors' offices have redefined the meaning of the word "appointment." I do think my blood pressure might get up to normal range while sitting there for hours.
     The good news is that I have - with this biventricular pacemaker of not quite two years and the meds - been able to handle things. Hospital cafeteria food had its chance to do me in. Oh my, the salt! Heart healthy section, indeed!
     Three and a half years ago I was to die. I did not and eventually found your site and had hope. Two years ago I was again to die. Because of this site I wanted this biventricular pacer/ICD and it has served me well. So far I have not been zapped. My heart size has shrunk. My EF increased and just walking across a hospital parking lot in 100 degree heat this summer seems a great feat!
     I have been exhausted but I think a normal person might feel the same? All this to say, another check to this fantastic site is on the way. Thank you so very much. Donna V.

Jon R, September 7, 2006 - Hey, I just thought I would share a little personal joy with everyone. My wife and I had a healthy baby boy named Aidan on September 3 2006! ;-) I am very happy but a little exhausted! I have to pace myself and not get too overwhelmed.

Zina S, September 7, 2006 - Hello all, I am 39 and was diagnosed with heart failure in July. I started out at 10% EF. As of August 29th I am at 30%. I am taking Coreg at 25mg, Mavik at 4mg, furosemide at 20mg, simvastatin at 40mg, potassium, and recently something called Bidil. I am keeping my daily sodium intake at 1200mg or less. I don't smoke or drink alcohol. I used to be very active before my life changed. Now my heart doctor won't let me do anything but go for walks - no treadmill, no free weights, no bicycle.
     I am in law enforcement and want to be able to go back to work one day. My heart doctor says I should be open to the possibility that I may have to file for disability, given my strenuous line of work. Whenever I accompany my husband anywhere, even to Wal-Mart, I have to stop and rest. At times I cry for no apparent reason and sometimes I cry because I don't have the energy to do the things I used to do.
     I experience headaches on a daily basis. The leaflet that came with the Bidil states that headaches are a sign that the medicine is working, so I just have to take extra strength Tylenol. Given all the above, does anyone have any advice on what I should be doing to make myself whole again both physically and emotionally? I must add that my family and my friends and co-workers are very supportive and encouraging. So I am not in this fight by myself.
Jon's note: Do you know what caused your heart failure? Do you have arrhythmia? Is your heart doctor a heart failure specialist?

Stephanie H's September 7 reply to Deborah J's August 23, 2006 - Hi Deborah Dr. Andrew Keller of Cardiac Care Associates is my suggestion. He's awesome, affiliated with the Inova Heart Center and is head of the transplant team and a really nice guy. I hope this helps.

Debra S, September 7, 2006 - Hi Jon, I had an interesting thing happen. I helped do a survey for Cleveland Clinic regarding their web site. I told them to check yours out because it's easy to follow plus a lot of great information. They agree that their's is hard to follow and does not have a lot of patient information. They are in the process of redesigning it. Debra.
Jon's note: Next time you see them, suggest that they just link to us as their basic CHF patient primer and run just breaking news and trial info on the trials they are doing at their site.  <g>

Rich F, September 7, 2006 - Hi all, After quadruple bypass in June of 2006, I had an ICD implanted. They tested the unit by sending me into ventricular tachycardia and the ICD should fire at full charge to stop my heart so it can come back to normal beating. This test was performed the day the ICD was implanted and then again 2 days later prior to my leaving the hospital. They now want me back to run another test 4 months after the implant.
     Is this normal to go through 3 major tests of my ICD? I also question the danger involved in sending me into ventricular tachycardia. I have been led to believe that during the test the heart stops beating and pumping for a few seconds. If there is no blood flow, I have been told that there is a possibility that a bypass can collapse. Has anyone come across a study on the number of tests necessary on an implanted ICD? Thanks, Rich F.

Eugenia R, September 7, 2006 - Hi, This message is for Jon and also anyone who thinks they can help. My ejection fraction is now about 50 and my heart size is within normal range now. I limit my fluid intake and follow a strict sodium restriction diet. Can you explain why I would still be retaining fluid considering my high EF? Does EF have anything to do with fluid retention? All my other blood tests, CT scans, and MRI are normal and kidney and liver test results are also fine. I have normal pulmonary pressures and right side of heart is fine. I am 40 years old now.
     When I first got sick about 2 years ago, my EF was less than 20 and my left ventricle was 6.6cm. Do you think this is still the reason for the fluid retention now, even though I have greatly improved? I am very confused about this. I would have thought once my EF was better my heart would be able to pump all the fluid around. Does anyone else have this? If someone could please respond I would be so very grateful. Thank you for your time in advance. Eugenia.

Jon's September 7 reply to Eugenia R's September 7, 2006 - Hi Eugenia, Please check out Also, note that the official treatment guidelines at say that, Patients with a very low EF may have no symptoms, while patients with normal EF may have severe disability. Why is not understood. Possible factors include heart wall motion changes, valve dysfunction, heart rhythm, problems with the heart's electrical signals, right heart dysfunction, blood vessel dysfunction, skeletal muscle changes, lung dynamics, neurohormonal and nervous system activity, and kidney function changes.
     Heart failure affects pretty much your whole body - that's why the need for a heart failure specialist is so strong. I don't understand why your fluid intake is now limited - this can aggravate the renin-angiotensin-aldosterone system which can aggravate just about everything else. Also, are you on a regular, well planned exercise routine, so you get and stay in good physical fitness?
     Is your body weight proper and if not, are you working on lowering or raising it to a proper level? Have you tried supplements like l-arginine or l-carnitine or creatine monohydrate? Lots of things to consider. Overall, it is critical to keep learning about heart failure and how to keep it well managed over time. Jon.

Jerry B's September 9 reply to Rich F's September 7, 2006 - Hi Rich, I can only speak to my experience. I had an ICD implanted last November and they did the standard arrhythmia test during the procedure. I went to the office about 2 weeks later for a wound evaluation and while I was there, they used the interrogator to check the ICDs function. It was fine. I then returned in 3 months, and then in 6 months following that, did it again with the same result. I would say that your experience is out of the norm. I would ask your docs if this was normal or if they have a special reason for doing it that way.

Giorg's September 9 reply to Rich F's September 7, 2006 - Hi Rich, I am not an EP expert but I think it is probably not normal going through all those tests. Usually one test during the implant is enough. Only if the first test fails they try another one with a higher charge, if the first was not at full charge.
     The only reason I can see for running many tests is that your wire may have problem of undersensing, meaning that your EP suspects (because it measured sensing and also checked your potentials by a holter) that your ICD cannot sense very low potential heartbeats and arrhythmias. In that case, since V-tach runs and especially V-fib, can have a very low potential, they prefer to run many tests on you - they evaluated that the risk of a test is smaller than make your run the the risk of undersensing on a V-tach. However, every case is different. There might be other reasons.
     Anyway, I do not think they would push many tests if you really do not need them.

Debbie H, September 9, 2006 - Hi, I have a question on Coreg. Since the pill is not scored I was told I could not use the stronger and cut them in half. Is this correct? I am now being told I can. Which is right?
Jon's note: Right or not, I used to do it all the time.

Zina S' September 9 reply to Jon's September 7, 2006 - Hi Jon, My doctor is a heart failure specialist. I don't have arrhythmia. As for what caused my heart failure, no one is quite sure. In February of 2002 I went to a hospital emergency room because I thought I was having a heart attack. I was treated for an upper respiratory infection and sent home. My doctor says that I may have had a viral infection.
     After about two weeks I was back to normal. Then on July 12, 2006, I started having chest pains, I couldn't breathe, I was restless, I could only sleep sitting in my easy chair - all the exact same things I had 4 years ago. The heart specialist at the hospital said, this much damage had to have occurred over a period of time.

Jon's September 9 reply to Zina S' September 9, 2006 - Hi Zina, Here's why I asked those questions. If you currently have decent coronory perfusion, meaning that your heart is getting a good blood supply to all its parts, and you don't have arrhythmia, then a heart failure specialist should be making you exercise even with a low EF. Mine prescribed it to make its importance clear to me. He specifically included two types of exercise: Treadmill walking and resistance training (weight lifting of the bodybuilding type). I believe all this exercise did almost as much for my return to normal EF as the meds.
     The medical literature is very clear and some of it is very recent, showing that exercise including resistance training, is a key component to managing CHF. See these pages for some of that literature: and For pages on how to exercise with heart failure, start at
     Since you take Bidil, I assume you are African-American and thus I wonder why you also take Mavik. Bidil is designed to replace ACE inhibitors in black people for the very good reason that results are better that way. The headaches might be from too much reduction in blood pressure due to the drug combination. I recommend against taking too much Tylenol since it's hard on the liver even at recommended doses. Finding and eliminating the cause is best, with second best being a prescription painkiller with no added NSAIDs such as acetaminophen or aspirin added to it.
     Personally, I strongly suggest getting a second opinion from a different heart failure specialist. At the very least, sit down your current heart doc and make him support his views with logical, literature-supported (if possible) reasoning for your individual case - in plain English - he gets paid the big bucks to do exactly that, so you're just making him do his job. And yes, I do this with all my docs. Actually, I take 2 identical typed pieces of paper with all my concerns with me, and immediately hand one to my doc so I can't chicken out of getting all the answers I need. None of my docs (PCP, cardiologist, dermatologist, rheumatologist, GI, and neurologist) mind this, in fact they like being able to add the info to my chart.
     Best wishes and I hope you are able to exercise soon! Jon.

Tony M, September 9, 2006 - Hi, I thought I might share this with you guys with fibromyalgia. I don't have it but my best friend does. There's a web site by a Dr. Wong, who has fibromyalgia and sells a product that is supposed to help it. See

Lowell P, September 9, 2006 - Hi, I recently had an echocardiagram and my EF went from 40% nine months ago to 30% this week. After the test I asked the tech operator for his estimate and he said about 40%. Do you think the cardiologist could have been underestimating this number? I don't feel a bit different. I've gotta say though, this Arizona heat will really wipe me out. My BUN was high at 62, but drinking more water brought it back to about 40, still high but not so alarming.I've had CHF for only three years and am an older man. I feel for someone dealing with this in their younger life. The constant worry wears on you.
     Someone mentioned their proBNP was about 4000. Mine has been over 5000 but when it was just the old BNP test it was about 700. I read where ProBNP can be as much as ten times higher than the old method or test. LP in Arizona.
Jon's note: ProBNP radically changes with age and whether you are male or female, among other things, making it harder for patients to usefully consider.

Sarah K, September 9, 2006 - Hi everyone, I've had CHF for years, mostly under control. However, lately it's been getting worse. My question to the forum is simple. I am limited to 1,500 ml of liquid a day and follow (by my own suggestion, if you can believe it) a less than 650 mg per day sodium diet. However, I am unbelievably thirsty. I take Coreg at 6.25 mg BID, torsemide at 60 mg, spironolactone at 50 mg BID and lots and lots of potassium. My ACE inhibitor was stopped due to low blood pressure and digoxin stopped due to toxicity.
     Any hints or ideas on how to combat the thirst without actually intaking any liquid? Thanks. Sarah.
Jon's note: This is not related to your question, but with low blood pressure, wouldn't it be better to switch from Coreg to Toprol-XL and go back on an ACE inhibitor so you get 2 kinds of benefit?

Jon, September 11, 2006 - Hi everyone, No posts yesterday because when my wife is working on end-of-semester Master's presentations, I run and hide downstairs. <g> Jon.

Mary C, September 11, 2006 - Hi, I have an event monitor now. I am going to call them because I was wondering if I should use it all the time I have a event - or do I just give them a rough idea and do it once in awhile? Anybody out there with experience on this?
     Also, I am on an ACE inhibitor and my blood pressure is finally going down (lisinopril). Do most of you feel a little lightheaded with it? I am on 2.5mg. I don't seem able to tolerate more than that. The weird part is I can feel my heart pounding, but when I feel my pulse to count it and record it, it is really slow. Is that normal on lisinopril?

Jon's September 11 reply to Mary C's September 11, 2006 - Hi Mary, I'll only address the event monitor. Because it's always recording over itself, when an "event" happens (your heart rhythm changes beyond a certain amount, becoming irregular or too-fast or too-slow), it will save the last 2 minutes or so before the event, record and save the event, and then record and save a couple of minutes after the event as well, not recording over that. There should be room on its "loop" to hold several events.
     When you have an event or two (ask your doc), you either call a specific phone number and play the monitor's recording into the phone's mouthpiece when it says to, or you go to your doc to have the recordings saved. You keep doing this for however long you wear the monitor, usually at least a month. Jon.

Gayle A, September 11, 2006 - Hi, My husband who has had heart failure since January of 2004, developed atrial fibrillation this past week. It really knocked him down and he felt wretched. He had a successful cardioversion with his ICD and is feeling better. The docs are starting him on amiodarone, which seems to be a nasty drug. Does anyone have any experience with it? Are there any alternatives for a-fib? Many thanks in advance for all replies.
Jon's note: I have no personal experience with it but consider dofetilide for prevention, and ask your doc about RSD1235 for conversion.

Spencer L, September 11, 2006 - Hey guys, Now this is going to sound extremely odd and just won't seem right but here I go: I am an almost 17 year old male who has been really suffering for a few months. I'd go to a doctor but I don't have a driver's license and my parents say that I'm just being paranoid. What is scaring me the most is that I went from 204 lbs to 211 in a few days. It got worse and I'm now 220. I doubt this is from overeating either. My feet are very swollen and my stomach is starting to get bigger and it is really poking out.
     Wouldn't that be ascites, which is an end-stage heart failure symptom? I still get around fine and don't wake up breathless at night (at least I don't think so), I just feel weak all over sometimes. A few weeks ago I sat down in the shower and fell asleeep for about three hours and that is worrying me.
     However, right now I appear to be going through a phase where I'm feeling a bit better. The one thing that is really, really bothering me is a bit hard to explain. Okay, I'm sure you all know how you feel when you hear an unexpected sound. Say you were walking around a corner and someone jumps out and scares you. If I hear any kind of loud or unexpected noise, I feel like my heart won't speed up and is going to stop. I just don't feel right.
     I'm always scared that I'm going to go into cardiac arrest and I can't live like this. It's hard though, when my parents won't take me to a doctor. These problems are coming from something back in February that seemed like atrial fibrillation due to the symptoms I had for about 5 months. Advice, please. Thanks to anyone who reads or answers this.

Penny R, September 11, 2006 - Please, can somebody answer this question? In 1999 I had a surgical mistake (fluid overload) resulting in heart failure (the surgery was stopped mid-way and I spent the next week in intensive care on a respirator. My heart enlarged and I had respiratory failure. When I left the hospital I was told that my heart had gone back to normal size and I "only had thickened heart walls" and later was told not to worry about it anymore; that I did not have heart failure. Can heart failure really only be a one time thing?
     I ask because I have definite symptoms, including shortness of breath, rapid heart rate usually above 80, high blood pressure averaging 170/105 and exhaustion. Some days I can't even brush my teeth without my heart pounding and feeling faint, I can't walk due to other health problems but if I stand more than 5 minutes I get so weak and faint that I have to sit or I will fall, but I am on a very limited income and cannot afford to go to the doctor for something that may just be in my head, especially if what I was told is true and my heart failure was a one time thing and went away.

Scott B's September 11 reply Sarah K's September 9, 2006 - Hi Sarah, It sounds like you are dehydrated. I would be if I only had 1-1/2 litres a day to drink. Is it possible the dehydration is contributing to your low blood pressure? I would also feel generally lousy.
     Is there a reason your sodium and fluid intakes are so aggresive? Scott B.

Jon, September 14, 2006 - Hi everyone, Well, I guess I now do the web site between doctor's appointments. <g> Now, I have a sleep study and colonoscopy to endure, along with what is almost sure to include brain scans now that my symptoms are really getting weird. I also now have to go to 3 different pharmacies to get my meds, some of which are weird. Anyway, here's posts. Finally! Jon.

Bill H's September 14 reply to Spencer L's September 11, 2006 - Hi Spencer, I'm not as smart as most of the people here, but my advice to you is to grab the bull by the horns and help yourself a little. Get to the doctor even if you have to walk or get a friend to take you, or something. It sounds like you have been doing some research, which is good, but you're going to drive yourself nuts if you don't stop thinking you have all that wrong with you. So, please for your own peace of mind get to a doctor anyway you can. Good luck.

Tom S' September 14 reply to Spencer L's September 11, 2006 - Hi, I didn't realize it was April Fool's day already. At least I am highly skeptical of this post, primariy because the writing style seems beyond that of most 17 year olds. If it is legitimate, then you should be intelligent enough to make a phone call to a friend or relative or even social services in your area and describe what you have described to us, including your health concerns.
     You could also find a friend to drive you to an emergency room. I don't know what state you are in but either you are of majority age at this time or will be when you turn 18 and will not need your parents' permission to seek medical attention.

Linda K's September 14 reply to Spencer L's September 11, 2006 - Hi Spencer, You don't mention in your letter whether your parents have any basis for not thinking there is a real medical problem. Have you ever seen a doctor for any of these symptoms in the past? Right off the bat, I would say that paranoia is nasty but it won't cause you to gain weight suddenly or make your feet swell. If it does turn out that you are retaining fluid in your abdomen, don't jump to any conclusions. I am definitely not end-stage, and one of my favorite places to retain fluid is in my abdomen, resulting in terrible indigestion.
     If your parents are truly adamant about not seeing a doctor, perhaps you could enlist the help of a relative or guidance counselor at school. I personally went from doctor to doctor for 6 months before I was correctly diagnosed, including one general care doctor who thought I was having panic attacks. You are the best judge of when your body doesn't feel right. When talking to adults, make your case as clearly and calmly as you can. Be specific in your descriptions of your symptoms. Write them down and edit until it sounds clinical, if you need to. If your parents need more convincing, there are plenty of people here with stories like mine about how hard it is for younger people to be correctly diagnosed for illnesses that too many doctors associate strictly with old age.
     There may be nothing wrong with your heart, but heart problems are dangerous, and you want to rule that out before assuming that the problem is above the neck. I'll be very interested to hear how things go for you. Good luck, and try to stay calm.

Scott B's September 14 reply to Spencer L's September 11, 2006 - Hi Spencer, Is there a reason your parents will not take you to the doctor? Is it financial? It's common sense you should be looked at for an evaluation. Is there a clinic or something you could walk to get a check up? This is something you can do on your own: Keep track of your fluids that you take in and measure your fluids out. It should not take very long to understand if you are retaining fluids. I would suggest you limit sodium to less than 2000 mg per day.
     I would not jump to the conclusion you have a heart-related illness. There are other symptoms which could cause this such as panic attacks or stress. You want to make sure you are just not working yourself up. Best of luck. Scott B.

Sandy N's September 14 reply to Spencer L's September 11, 2006 - Hi Spencer, Please have your mom or dad read your post. If they don't take you seriously, tell your favorite teacher. If no one takes you seriously, go to the nearst hospital emergency room and tell them your symptoms. You need a complete check-up. Best of luck to you. Let us know your results.

Sarah K's September 14 reply to Scott B's September 11, 2006 - Hi Scott, That has been our question exactly to the doctors. I retain a constant 3 to 4 pounds of water (only in my abdomen and chest, which results in a lot of discomfort) and the diuretics seem to keep it from going up, but never get it down. Unless I do a "urine bomb" and take a hydrochlorathiazide before the torsemide, in which case I pee like a racehorse, but that drops my potassium pretty drastically and the docs seem to prefer a slower approach. It is my feeling that I am dehydrated which is why I can't lose the water (sometimes you need to drink a little to get rid of the retention) and why I'm so danged thirsty.
     My heart failure is officially class 3. I can definitely see the benefits of the the low sodium diet, but am still iffy on the water restrictions.
Jon's note: Unless your CHF is so severe that you need to reduce the amount of blood in your body (volume), then a strict fluid restriction can aggravate the RAAS, worsening symptoms.

Stephanie H, September 14, 2006 - Hi all, I am a regular reader and sometimes post to this forum. I am a 47 year old female with IDCM, CHF, V-tach with an ICD and an additional Optimizer III implant as part of a study. I am on all the normal HF meds and am currently not experiencing many symptoms.
     My main problem at this particular point is that I am having severe hot flashes. They are absolutely driving me crazy, keep me up at night and I'm miserable when I'm awake. My doc won't put me on hormone replacement therapy because of the recent Womens Health Initiative Study. A reply from anyone with experience, information, or any alternative remedies would be greatly appreciated.

Holly M, September 14, 2006 - Hi everyone, Do any of you know the name of a booster diuretic besides Zaroxolyn? I am currently taking 240mg Lasix a day and have to booster to keep the fluid in check. Every time I booster I am sick for 2 to 3 days (nauseous, vomiting). I know my potassium drops when I take this so I increase my dose to offset that but I'm starting to think its some kind of allergy or something to the zaroxolyn. I heard there's another booster that begins with an M but I don't know the name. I get tested next week to go on the transplant list, we just can't seem to find that middle of the road on meds and symptoms to keep me out of the hospital. It was every 6 to 8 weeks but now it's more like every 4 to 5. If you guys have any ideas that my docs and myself are overlooking would love to hear. Thanks, Holly.
Jon's note: If you're thinking of metolazone, that is another name for zaroxolyn.

Debbie H, September 14, 2006 - Hi all, Thanks for the replies on splitting Coreg. I am very angry with Dillion's pharmacy and my heart specialist, who told me I could not split the pills back in, I believe, April of 1998. I could have saved close to $600 a year for 2 years.

Lynn G, September 14, 2006 - Hi all, I took Vytorin for 30 days then I stopped. I can't breathe. Will this go away? Shortnesss of breath is the worst. A doctor gave me Singulair for 10 days and I feel so bad. Help!
Jon's note: See another doctor immediately, even if it means going to an emergency room (remembering that ER visits are expensive).

Clair W, September 14, 2006 - Hello, My wife has been on an ARB called Atacand now for 6 months. She had a bad cough with ACE inhibiters so her CHF doctor put her on the Atacand. A month ago he doubled her dosage to get to the target dosage 32mg a day. Since that time her mood has become dark. She has become far more tired and she complains about back and joint ache problems. She also says she feels like she is slurring her words and has to think more before she talks. I had not noticed this.
     Yesterday I noticed she seemed a lot happier and in a better mood. I asked why the change and she said she that she had gone back to just one Atacand a day instead of the two she was taking. Has anyone who uses Atacand seen these same problems? I am very concerned about the lower dosage as the doctor was hoping we would see an improvement in her heart performance at the higher rate. Her EF is curently at 35% and up until our last doctor's visit it had climbed every visit. The last visit it dropped from 39 to 35. Should I be concerned that we are not seeing all we can from the Atacand since we did not get to the target dosage?
Jon's note: What other meds does she take, and are they at usual target dose?

Pete T's September 14 reply to Rick W's September 3, 2006 - Hi Rick, Congrats on the great improvement. I would say you should lean on nutritionists and your doctor to find out what leeway your diet will give you. Rather than looking at your newfound health and ability to eat as "cheating," you might want to look at the situation from the perspective of, "What flexibility can I have within my diet parameters?"
     I'm no medical professional, so just take this with a grain of Mrs. Dash - maybe they'll be able to let you eat out a little more periodically. Again though, only a medical professional will be able to tell.

Patrick H, September 14, 2006 - Hi all, Any thoughts on this? My initial diagnosis of CHF was made November of 2005 when I had an EF of 48%. A subsequent (about a month later) thallium stress test had my EF at 58% with no ischemic blockage and indications of high toleration for moderate exercise. The initial BNP result was 122, but a BNP about 2 months ago was 25.
     My doctors are mad at my weight gain - and so am I. Can anyone tell me, does a combination of Coreg, Lasix, and diovan contribute to weight gain, or am I looking for something that isn't there?
Jon's note: How much weight have you gained in how long? Has your waist measurement changed radically? Do you have diastolic HF? Have you been checked for lymphedema and other potential causes of weight gain? Have you had a Vo2max test to accurately measure your tolerance to exercise?

David W, September 14, 2006 - Hi, I live in Livonia, Michigan and have preliminarily been diagnosed with CHF. I have my first cardiologist appointment in two weeks with a Wm. Beaumont affiliated doctor. What is the concensus among you living in my area? Is Beaumont the best choice or would one be better off with Henry Ford or the University of Michigan hospital? My health insurance covers all of them.

Penny R, September 14, 2006 - Well, I ended up going to the ER and they did not seem concerned at all. They only took my vitals once (upon arriving) and my blood pressure was 170/80, heart rate was 112 and pulse ox was 99. They then parked me on a gurney in the hall for an hour and a doc came and listened to my lungs. An hour later I got a chest x-ray, two hours after that some blood drawn and about an hour after that I had a 12-lead EKG. Three hours later the doc came back and said that my blood tests were acceptable, the EKG acceptable and my heart on the x-ray big, but not too big and told me to go home and consider getting an echo in the next year. They never rechecked my blood pressure or heart rate and when I asked what I should do if I get close to passing out or pass out again in the future I was told "if that happens, come back."
     The whole reason I went in the first place was because I took a shower and had to sit on the bathroom floor for half an hour before my heart stopped drumming and I caught my breath. When I explained to the doc that I only drink about 1000 ml a day (I have a 16.9 ounce bottle that I fill twice a day with green tea, the only thing I drink) because if I drink any more my legs swell and I end up living in the bathroom she just told me I had to drink more than that because my blood tests did not show that I was dehydrated, and pointed at the exit.
     I now have a huge bill coming and feel like a fool for going in, I should have stayed home.
Jon's note: Is that regular caffeinated green tea?

Cary D, September 14, 2006 - Hi, My company insurance through COBRA has expired and I'm trying to find an insurance company that provides individual health coverage. I've been told that no insurance will cover me because I have CHF. The insurance companies tell me that the only way I can obtain health insurance is through a group company plan. Is this really true? Has anyone else experienced this situation? Any comments or suggestions would be helpful. Thank you.
Jon's note: They're as expensive as COBRA but most states have state-run high-risk health insurance pools.

Karen K's September 15 reply to Cary D's September 14, 2006 - Hi Cary, I don't totally know your circumstances but I'll try to explain mine regarding insurance. I am on Disability (primary carrier) and covered through my former husband's employer (COBRA) for which I pay $285 a month. As of February 4th (3 years after our divorce) I will no longer be covered by COBRA.
     I have begun looking for supplemental insurance to take place of the COBRA. My biggest concern is prescription drug coverage. I've had luck working with Wellmark Blue Cross/Blue Shield. I can't sign up for prescription drug coverage through Medicare until the open enrollment period, which starts November 15.
     As it appears now, I will terminate my COBRA coverage November 15, when I'll be able to receive Medicare Rx coverage but I'll be going with the Wellmark Blue Cross/Blue Shield plan. I asked about pre-existing conditions and I was able to truthfully respond no to the three questions asked. Not one question was about CHF. Two dealt with heart attacks and Coronary Artery Disease. Go figure.
     I hope this helps somewhat but not knowing your circumstances, I can't offer much more. Feel free to e-mail me if I can be of further help. Karen.

Debra S' September 15 reply to David W's September 14, 2006 - Hi David, The head of heart failure at Cleveland Clinic thinks that Ford is the best. He trained a doctor there by the name of Celeste Williams. She is assistant head of transplant and advanced heart failure. Which Beaumont doctor are you going to see? Good luck. Debra.

Patrick H's September 15 reply to Jon's September 14, 2006 - Hi Jon, My weight gain has been from 180 to 200 lbs in 9 months with an additional 2 inches to my waist (36 to 38 inches) and no to the tests you inquired about. Physicians told me to carry on as usual when the thallium stress test and latest BNP results came back about two months ago. Both internist and cardiologist have been overflowing about my test results. The cardiologist termed them as extraordinary. Hopefully, their cheerful outlook is warranted.

Jon's September 15 reply to Patrick H's September 15, 2006 - Hi Patrick, Well, I'm no doctor, but it sounds like the classic deconditioning plus Coreg weight gain to me. That means well-planned exercise plus well-planned diet - no matter which one. You'll have to give it 4 to 6 months for complete results but it can be done. If that doesn't do it, you need to be checked for another problem.
     I'm behind on mailings, but the New Page has been updated. Jon.

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

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