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

Jon 5-1     update on medical conference
 
Bob H's 5-1 reply to Penny M's 4-26     also wonder about Restoril's effects
 
Ben B's 5-1 reply to Anil M's 4-29     where do they come up with these numbers?
 
Tom S 5-1     implant procedure experience
 
Marty C 5-1     interesting online discussion on HF meds
 
Paul R 5-1     correction on trial information
 
Jack H's 5-1 reply to Anil M's 4-29     EF is just a number
 
Penny M's 5-1 reply to Jon's 4-29     I should probably have another EKG
 
Barb N's 5-1 reply to Charles W's 4-29     dealing with apnea and heart failure
 
Charles W's 5-2 reply to Barb N's 5-1     thanks
 
Fred B 5-2     seek others with restrictive cardiomyopathy
 
Emil S 5-2     conference question
 
Michele F 5-2     question on fluid intake restrictions
 
Scott B's 5-2 reply to Anil M's 4-29     maybe another opinion is in order
 
Dorothy M's 5-2 reply to Michele F's 5-2     special toothpaste may help & more
 
Scott B's 5-2 reply to Michele F's 5-2     diuretics and fluid restrictions
 
Penny M 5-4     seek CoQ10 experiences
 
Penny M 5-4     update, hitting the wall
 
James N 5-4     need health insurance advice
 
Giorg's 5-4 reply to Lori K's 4-26     diuretics, edema, meds, and more
 
Tom S 5-4     update on pacer/ICD implant
 
Donna V 5-4     seek ARB trial participants
 
Scott B's 5-4 reply to Jon's 5-2     diuretics question
 
Jon 5-6     I want your opinions
 
Bill H's 5-6 reply to Scott B's 5-4     twice a day diuretics experience
 
Donna H 5-6     LVADs
 
Tom S 5-8     ultrafiltration
 
Ben B 5-8     ultrafiltration
 
Sharon L's 5-8 reply to Scott B's 5-4     torsemide
 
Joy K 5-8     ultrafiltration
 
Roger G 5-8     ultrafiltration
 
Barb N 5-8     ultrafiltration
 
Brian M 5-8     seek echo report explanations
 
Gene G 5-8     seek abdominal diastasis experiences
 
Deb 5-8     update on my dad
 
Paula D 5-8     what class am I? and more
 
Nancy P 5-8     seek D-ribose information
 
Sue S 5-8     seek CHF doc near Savannah, Georgia
 
Joey 5-8     question about Lasix and food
 
Henry T 5-8     update, doing well, thank you
 
Jon 5-11     update on me
 
Penny M 5-11     higher EF but feel worse!
 
Jon's 5-11 reply to Penny M's 5-11     improved EF but feel worse
 
Kris P 5-11     seek ideas on my dad's breathing difficulties
 
Suzy B 5-11     seek ideas on my daughter's situation
 
Michele F 5-11     it's comforting to know living with HF is possible
 
Lorraine S' 5-11 reply to Sue S' 5-8     HF doc recommendations
 
Donna V 5-14     get a load of this!
 
Charles W's 5-14 reply to Penny's 5-11     dealing with improved numbers but feeling bad
 
Ann Marie M 5-14     is this too hard on my heart?
 
Robert K 5-14     should I go for disability?
 
Giorg 5-14     I am trying torsemide
 
Jon's 5-14 reply to Giorg 5-14     torsemide versus furosemide
 
Kitt A 5-14     how can I effectively support my sister?
 
Marty C 5-14     cold, numb extremities when lying down
 
Karen K 5-14     seek back pain experiences
 
Giorg 5-14     I am trying torsemide
 
Jon's 5-14 reply to Giorg's 5-14     torsemide
 
Joseph P 5-14     Maze procedure helped my a-fib
 
Sandy N's 5-14 reply to Michele F's 5-11     the right CHF doctor matters
 
Lynda W's 5-14 reply to Michele F's 5-11     seek New Jersey heart failure doctor
 
Jimmie 5-15     do I have any other options?
 
Charles W's 5-15 reply to Donna V's 5-14     maybe me too?
 
Marty C 5-15     magnesium dose question
 
Jon's 5-15 reply to Marty C's 5-15     magnesium doses
 
Tracey H 5-15     why am I decompensating suddenly?
 
Jack D 5-15     you must watch this for identity theft!
 
Cheryl C 5-15     new low sodium products
 


Jon, May 1, 2006 - Hi everyone, I'd like to take some space here to speak about the other presentations I heard at PC-Heart's medical conference that I recently attended. Some of the presenters would not share slides since they are part of ongoing research but I can hit some highlights that I think you all should know.
     Surgery is one area that held some surprises for me. Comparisons between what different medical staff think heart surgery outcomes will be and what they really are can be staggeringly different. Heart surgeons consistently over-estimate how well you will do after surgery. How much they overestimate it is the surprise. It's ridiculous. So when you talk to a heart surgeon, take the results he predicts for you with a whole shaker full of salt - you will almost certainly not do as well as he thinks you will do.
     Another surprise was that only 12% of end-stage heart failure patients ever make it to hospice care. If a loved one - or you, yourself - believe you are end-stage and need therapies strictly for symptom relief, push the involved doctors hard, hard, hard to get hospice or palliative care for the CHFer involved. The doctors are not likely to get you there.
     ICDs are another one that "shocked" me (sorry, couldn't help that pun). An ICD is not a sure-fire guarantee of revival from sudden cardiac death. In fact, the actual statistics show that they are not as effective as your doctors claim they are. They are a live-saver for many people - but not for everyone who has one.
     I got into a little public debate with one very sharp person there and it turns out no one really knows how many CHF specialists there are because no medical person has a definition for it. They currently consider any cardiologist with "a self-expressed interest in heart failure" to be a CHF doc. I pointed out that this is nonsense since such a doctor's patients may only be 30% CHFers - and that as a CHFer, I want a CHF whose patients are 80% or more heart failure patients. This one sort of surprised them. I caught them pulling numbers apparently out of thin air and made it clear that we as patients actually have higher standards many times than doctors so they should get on the ball and get this specialty properly defined and quantified.
          I hate to bring up stuff like this but hey, the numbers were presented and they were very clear, as were the presenters. Jon.


Bob H's May 1 reply to Penny M's April 26, 2006 - Hi Penny, Could it be the Restoril? or my heart? - sounds familiar! I am taking Restoril at 10mg at bedtime for the same reason. I did have an ICD implanted last April and am taking Coreg at 6.25mg twice a day, digoxin (Lanoxin), Lasix, Monopril, Zocor, and glyburide. Like you, I'd appreciate any help. Thanks, Bob. rhartong@isp.com


Ben B's May 1 reply to Anil M's April 29, 2006 - Hello, I guess the first question I would ask these guys is if they were lying to me before the surgery, or are they lying to me now? I seriously don't know where they pull out these statistics that they are so certain about. What is the reason for the poor prognosis? Is it solely based on the EF result? Is it because of the CHF or the CAD?
     I had a 10% EF about 9 years ago when I was diagnosed with idiopathic DCM, but it has improved. I haven't had any blockages up until now, but I do have some small plaques in my arteries, so I will likely be where you are at some point.
     I know several people who started with very low EFs that improved over time. I lived about 5 years with an EF under 30% before it improved to about 45 to 50% where it is now. bdbrinkman@juno.com


Tom S, May 1, 2006 - Hi all, I've been out of the hospital for a few hours and I am still sore on the upper left quadrant of the chest where the device implant was done. I was built a little differently than others with all kinds of veins going to the wrong place in the heart so my procedure took over five hours. I was definitely uncomfortable because I am a very heavy man and it was all pressing down on the base of my spine. I also had to keep my arms and legs still during the whole thing which also became very uncomfortable. I was awake for most of it but only remember the first part of the procedure of them actually situating the unit and wires.
     I could hear but not see anything of the procedure because they covered my face with a little tent of the surgical drapes. Most of what they were saying was all greek to me. I more or less understood when there was a problem because the doctor would say it was too short or too long and ask for another "wire.quot;
     The good thing was that just before they were going to test the unit I heard the doctor order Versed injected into my IV. The next thing I remember is waking up in my little space in a special section of the hospital which is specifically set aside for device implants and cath recovery. They were fully open to the nurses station except for when the drape was pulled, and come equipped with a television and one chair, along with wall mounted monitoring gear.
     Prior to the implant I had a TEE (transesphogeal echocardiogram) to determine if there were any clots in my heart. There were none, so they could proceed with the implant. The TEE was done in my little room in the recovery and waiting area. All I remember is seeing the device they were going to stick into my esophagus and after that I was wide awake and looking for all the people that had been there what seemed like a few minutes before.
     In general, I wouldn't say it is the worst thing I have been through in a doctor or dentist office. In fact, I would take the implant any day over having a tooth drilled or pulled. It is more frightening to think about it than what you endure, so relax and think about other things while they are doing it.
     By the way, I have heard most doctors pretty well knock their patients out, but I was high risk heart patient so I imagine that is why they did not want to go too far with the anesthesia beyond the local. That did wear off after a while and it's strange to say that even with a hand in my chest under the skin poking and prodding, there was no real pain associated with it; just a lot of pressure like someone grabbing your arm real hard.
     The next morning the manufacturer's rep came in and put a coil on my chest over the device and queried it for all the info it had collected thus far. He said it was running great and they would make some tweaks in about three weeks after the leads had settled into the heart. The only real don'ts of having a pacemaker of this type were no electric drills, generators or big loudspeakers near it. He said I would be fine with a cell phone, wireless phone, computer, running a microwave and watching TV. Again, use common sense when you are around devices that send out large electromagnetic pulses.
     Good luck to all having it done, and our thoughts and prayers will be with you. bigheart@muchomail.com


Marty C, May 1, 2006 - Hi, I just happened across this online transcript of a conversation between heart docs and I thought I'd shoot it over for your perusal. I thought it was pretty interesting to listen in on the different docs talk about the subjects we bat around here so often. I wouldn't be surprised to find you already have this one up somewhere, but just in case, it's at http://conversations.acc.org/modules/conv/acc/0904e/transcript_print.asp. Marty. padre45@aol.com


Paul R, May 1, 2006 - Well, I'm wrong again - this program, which is called HFACTION (Heart Failure: A Controlled Trial Investigating Outcomes of Exercise TraiNing) is only in the US and Canada. Sorry for any confusion. pryberg@gmail.com
 
Jon's note: They're not including resistance training in this, are they?


Jack H's May 1 reply to Anil M's April 29, 2006 - Hi Anil, What does your cardiologist hope to accomplish by tossing around survival forecasts. Everybody is different.I have been living with an EF in the 15% range for at least the past three years. It's just a number. One man's 10% can be another's 40%. Find a cardiologist who is more confident that a good treatment plan can extend your life. firstngoal@comcast.net
 
Jon's note: Even the official treatment guidelines now mention that a patient with low EF may do better than a patient with a higher EF.


Penny M's May 1 reply to Jon's April 29, 2006 - Hi, I checked a report from 1995 reguarding a 24 hour Holter test and back then it reads I had 68683 QRS Complexes, Q-Wave continues to be present, as does intermittent biphasic T, and 3446 polymorphic occurring R after T. I had PVCs, V-tach, couplets, and atrial tach during that test.
     I had an EKG in the emergency room two months ago, but don't know what it showed. I guess I need another EKG. pmechler@midsouth.rr.com


Barb N's May 1 reply to Charles W's April 29, 2006 - Regarding apnea and CHF, Yes, I'm lucky enough to have both. My CPAP experience has been interesting and seems to be working after about 6 months of getting educated on the apnea treatment options and taking charge of my own sleep therapy. Sleep studies, as you probably have figured out, bear little relationship to how we actually sleep in our own environments. We're not usually wired up and restrained to sleeping on our backs (which is actually the position in which apnea is the worst, especially for those of us with CHF-related breathing difficulties anyway).
     Further, many durable medical equipment providers (DMEs) don't provide the most modern, effective or comfortable equipment. As a result, frequently pressure settings are not optimal, masks are not fitted well or just plain hurt, mouth breathing is not corrected, and compliance with and effectiveness of CPAP therapy suffers accordingly.
     I was lucky in that my local DME was so unresponsive that I did online research and bought my own machine, which allows (with my physician's review and consent) periodic re-titration to set the optimal pressure. The machine also has software (extra cost but worth it) that lets me evaluate the effectiveness of the therapy by recording any apneas or hypopneas (frequency refered to as AHI).
     I went from around 70 AHI assessed during sleep study (with some apneas lasting over a minute) to 1 or 2 a night, after 3 to 4 months of learning how to sleep with the machine, calibate it optimally, and actually keep the mask on all night most nights. I used to be incredibly tired all day most days, now I am not. So don't give up on the therapy - it can work and make a big difference! But just like CHF, its important to get educated and also to realize most doctors don't have a lot of experience with treating apnea. protoplasm2@aol.com


Charles W's May 2 reply to Barb N's May 1, 2006 - Hi Barb, Thank you for your response. I sent you a thank you this afternoon but it wasn't received because you're no longer accepting e-mails. CRichardW1@aol.com


Fred B, May 2, 2006 - Hi everyone, I was diagnosed with restrictive cardiomyopathy 3-1/2 years ago. The diagnosis was made from a cardiac cath showing my gradiant chamber pressures were 2-1/2 times greater than normal. Then a week later a second cath was done for a biopsy, that made the diagnosis official. I continue to work full-time as a registered nurse but have little to no energy and even though I take daily medications I continue to get short of breath, have chest pain, and mild edema.
     I would love to speak to someone with the same diagnosis, I have restrictive cardiomyopathy. Thank you, Fred. gsf_1200@msn.com


Emil S, May 2, 2006 - Hi Jon, At the conference did they mention anything about Vescell and its program? emil@rnworks.com
 
Jon's note: No, it would have been way off-topic at this conference, which was concerned with ethical issues in heart failure treatment.


Michele F, May 2, 2006 - Hi all, I have a question regarding fluid intake. My brother, who was diagnosed with IDCM was told to restrict fluids to 1-1/2 quarts a day. I know all the reasons why, but his mouth often gets dry (because of the meds) and he's very thirsty. Any advice on how to combat this? Is the 1-1/2 quarts a day an absolute figure? He's on Lasix twice a day, so wouldn't that flush out extra fluid? Sometimes sucking on a piece of hard candy just doesn't do the trick. Thanks for any advice. mmfoy@comcast.net
 
Jon's note: My question would be how bad are his edema and shortness of breath? If they are mild, there is no reason for a fluid restriction, which is generally intended for sicker patients. Two liters daily is the usual amount when restriction is necessary.


Scott B's May 2 reply to Anil M's April 29, 2006 - Hi Anil, Unless your cardiologist knows something that we don't know, he is quoting out of an old textbook. Perhaps you could ask him what this information is based on (since EF alone is not going to tell you much). Perhaps you should go searching for cardiologist number 3 - someone with a more optimistic outlook. Since you are at high risk, did he suggest a defibrillator or pacemaker?
     If you are feeling decent, I would try to live a relatively normal life. The last thing you want to do is let a diagnosis define who you are - and what you do (if you don't have to). Scott Brown. scott.brown@sunlife.com


Dorothy M's May 2 reply to Michele F's May 2, 2006 - Hi Michele, You might suggest that he try Biotene toothpaste. I take amyltripytline so I will sleep deeply at night. This medication causes an extremely dry mouth and my doctor recommended this dry-mouth toothpaste. Biotene costs about 7.50 dollars US per tube, but the results far outweigh the cost. Another note - dry mouth can wreck havoc on teeth, resulting in pitting and other problems. I hope this helps! Dorothy. mitchellmom@cox.net


Scott B's May 2 reply to Michele F's May 2, 2006 - Hi Michele, While I do not know the particular details, I'm not sure why your brother has to take diuretics twice a day (every day). Usually a cardiologist will have a person weigh themselves every morning. If they put on a few pounds, you take an appropriate amount of diuretic to get rid of the fluid retention. I would suggest a digital scale (you also need to realize there are other reasons you can put on (or lose) weight) so it is not an exact science.
     One to 1-1/2 litres is used for individuals on strict fluid restrictions in the hospital (often they have an IV and IV diretics). I'll bet your brother is feeling pretty lousy with all of the electrolytes which are being washed out of his system. If your brother is still active, he may require more liquid to make up for what he will lose in sweat (during the summer).
     Good luck. It's no fun being thirsty all of the time. I would suggest fluids should always be ice cold. For whatever reason, it seems to last longer. Scott B. scott.brown@sunlife.com
 
Jon's note: If it is furosemide (Lasix), twice a day is appropriate because it is a short-acting diuretic. Torsemide lasts an average of 10 hours, often more, so it only needs to be taken once a day. In my opinion, it is the diuretic of choice for the average CHFer and it is available as a generic.


Penny M, May 4, 2006 - Hi all, Can anyone tell me if CoQ10 really helps? I already have a very high medicine bill and don't want to throw my money away. I baught a bottle today - 50mg is the strength. Thanks very much. Penny. pmechler@midsouth.rr.com


Penny M, May 4, 2006 - Hi, I had my echo Tuesday and the tech told us my EF is probably 30 to 40%. The way I've been feeling lately I thought it would be less. My left ventricle is large, I think she said 7.7cm was the measurement. After some studying, I see that I've been living in denial for a long time and have been pushing myself beyond my ability, lifting things I shoudn't be lifting. I don't have the energy to push anymore, I have no choice but to slow down and take care of my delicate heart. I don't want my heart to continue enlarging and then fail me. Everyone, please take care of yourselves and take your heart condition seriously. Penny. pmechler@midsouth.rr.com


James N, May 4, 2006 - Okay, I really could use some help navigating the health insurance world. I'm in Ohio. My wife lost her job in March, coverage ended on 3/31, and we're going to have to use COBRA. It appears I can elect coverage alone and we can consider other options for the rest of the family. This, however, is only a short term solution.
     Although my health has improved, I'm really not at a place where I can do the 9 to 5 thing again (especially since it's more like 7 to 10 in today's corporate world). She's searching but having zero luck. I'm trying to find health insurance alternatives for myself that will free us of the employer-group-plan scenario. I have my own small business and my wife wants to start her own but at this point we are so severely limited by the need to work full time for health insurance. Help? noctaire@yahoo.com
 
Jon's note: Most states have a high-risk insurance pool but it's often as expensive as COBRA and limited so the sooner in the year you check it out, the more likely spots will be available for you. Talk to your state Senator's staff. I hope others post options also.


Giorg's May 4 reply to Lori K's April 26, 2006 - First of all, thank you all, thanks Jon and thanks Lori for your suggestions about avoiding colds. I already bought antigermacide soap and I am getting used to washing my hands frequently. Unfortunately I cannot avoid public transportation that, I know, is so unhealthy. Actually I have to stay at least one hour a day in public transportation to get to my job.
     Secondly, I would like to tell my experiences about fluid restrictions and diuretics. Despite my EF not being so low (about 35%) and also my overall condition (not considering arrhythmias) is not so bad (I work full time), I retain liquid. I have to follow a strict low-salt diet and drink less than one liter a day of liquid. I am used to eating just a little of foods that contain a lot of water. If I go further, I retain liquid in my belly. My 20 mg of Lasix a day is not enough to get rid of it. So I have to double it, and to be stricter and stricter for some days about liquid and salt. My cardiologist does not want me to swich to Demadex because for him Demadex remains too long in the body, he prefers Lasix's quicker response.
     I do not think (and no cardiologists ever told me), that as Lori's nurse pointed out that Demadex should be better for whom retain fluid in the belly. Why should that be? I am pretty sure that when I retain fluid in belly, I badly absorb all oral medications. In some cases, when fluid is too much, I go to a hospital and get diuretics through my vein.
     So why do I (and others of us) retain so much fluid, despite my overall condition? I take medications that cause, with hormonal inibition, fluid retention: ACE inhibitor and ARB a little plus beta-blockers (sotalol, one of the worst to tolerate). So I think it is due mostly to medications, both the type and the dosage. When I did not take an ARB, and I took Coreg instead of sotalol and I did not have all these problems with fluid retention. But the actual therapy is better then the old with my arrhythmias. That is my main problem in this phase of my disease. giorgclunei@hotmail.com
 
Jon's note: I'm just guessing here but since torsemide's action is 4 times stronger than Lasix, even if it is not absorbed well, it will have a greater effect. Also, kidney and liver dysfunction can contribute to stomach swelling and these problems have less effect on torsemide than on furosemide. Wild guesses only here, nothing proven.


Tom S, May 4, 2006 - Hi everyone, It's been 6 days since my BiV pacer/ICD was implanted and healing seems to be occuring at a rapid clip. Pain is very minimal unless I overextend my left arm. I still will not lift my left arm very high and I am cautious when pushing myself up to get out of bed or a chair. I was told not to extend the arm that is on the side (left) of the implant, or lift it over my head or carry anything over five lbs.
     Friday morning I have an appointment to see the pacemaker nurse and at that time she will remove the dressing and do a complete checkup of the device via a coil that is placed over the area of the device. It is quite a phenomenal piece of electronic wizardry and I would recommend you Google the device and read all about it's capabilities. (Jon's note: it is often called a device programmer) bigheart@muchomail.com


Donna V, May 4, 2006 - Hi all, I had an intersting phone call from my cardiologist's office today. It seems my doc is inviting me to partcipate in some FDA-approved study to see if Diovan (an ARB) might be benefical to CHF patients. There is nothing to lose so I'll do it. Is anyone else doing this? It seems the main criteria is that one is literate and compliant with meds, diet and such. I figure the more my cardio sees of me the better he'll "look" at me. He's not led me astray yet. It seems they'll pay me 30 dollars per visit and samples of my normal meds will be available. The other fun news was the nurse quoting my CHF doc's report that my EF is now 37%. I'll take that! It sure beats the 5% just before my BiV pacer was implanted in November of 2005! Donna V. dmvditty@aol.com


Scott B's May 4 reply to Jon's May 2, 2006 - Hi Jon, Could you explain why some people take diuretics twice a day while others take them (the same total dose) every second day? Am I the only person who feels inconvenienced while under the diuretic effect? I feel lousy after taking a diuretic until I build up my electrolytes again.
     I typically take 80mg of Lasix every second day. I could take 40mg every day or 20mg twice a day but I'd be worried that I was going to be stuck to the restroom all the time. When I take my 80mg, pee breaks get as close as every 5 minutes. I can't imagine wanting to extend this inconvience to 10 hours but maybe I am imagining this wrong (since I have not tried it).
     I would be interested on any insight on this. Thanks, Scott B. scott.brown@sunlife.ca
 
Jon's note: Actually, the standard practice is now twice a day if taking Lasix, once a day if anything stronger. I like the torsemide for 2 reasons - I feel better dryer and that's what it does, and there is a suggestion in trials that CHFers on torsemide actually do better than those on Lasix. Plus of course, I can eat whenever I want and still get full effect while with Lasix I cannot.


Jon, May 6, 2006 - Hi everyone, There's been an experimental therapy to remove excess fluid around for years. In fact, we've sent info on it out on the mailing list in the past. It's called ultrafiltration and is rapidly becoming accepted for when CHFers are hospitalized and have really bad edema. Now, I haven't posted any of the latest information about this therapy, which is promoted through a company called www.chfsolutions.com.
     The reasons it hasn't made it to our pages are these: If you've ever been hospitalized with serious edema and taken IV Bumex, you know that in a matter of hours, you can lose all the extra fluid and more. Of course, you must have your electrolytes monitored and corrected for a day. I honestly don't see how ultrafiltration can do a more effective job than IV Bumex, although you don't need the electrolytes monitoring as closely with it.
     Secondly, IV Bumex is a whole lot cheaper than ultrafiltration, I am quite sure. The new therapy requires a machine and is actually even more invasive than the IV diuretic, which requires only the IV inserted, bag, hose, and drug.
     Perhaps if you also have kidney failure, the ultrafiltration would be a better option since the fluid is not removed using the kidneys as the route out of your body. Under other circumstances, it really looks like a more invasive and more expensive way to do the same thing.
     I'm asking for input here on what you all think. Am I overlooking something? I seriously want to know what you think about my thinking on this specific therapy. Are there advantages here I'm missing? Pros, cons, whatever, I'd like to know if you think this therapy beats IV diuretics when you are in the hospital with serious edema. Thanks for any and all opinions. I may not post them all - I may not have the energy. <g> However, I will read every one. Jon.


Bill H's May 6 reply to Scott B's May 4, 2006 - Hi, I take 80mg twice a day. Otherwise I swell up pretty good. The only time that I have to go to the bathroom a lot is when I take in excess fluids or when I think I'm pretty smart and don't take them like I should. I do things like that just to see what will happen - nobody ever said I was too bright. bj5250@yahoo.com


Donna H, May 6, 2006 - Hi, I noticed that someone mentioned the Heartmate in a post awhile back but no one responded that has one. A year ago, I talked to two men that had implanted LVADs. One told me that he could only walk a step or two before the LVAD and now walks 1.7 miles each day. One man had his for about a year and the other about 6 months. Both were very happy with the device and felt that it gave them a second chance at life.
     My husband is on the 1-1/2 liter fluid restriction and takes 80mg of lasix minimum.He is between class 3 and class 4. He weighs every day and it is sent to his nurse by way of a machine called a health buddy. They keep close tabs on how much he weighs and it has been a big help. A low-sodium diet is very important. If we eat Chinese food or anything with soy or MSG, his weight will go up even though he still feels thirsty. Eating fresh foods (not canned) and cooking at home makes cutting out sodium much easier.
     We are off soon for another heart transplant evaluation. Even though his EF is around 40%, he doesn't feel as well as he did last year. I wish there was a way to measure the wellness of a heart failure patient! herdrich@grm.netherdrich@grm.net


Tom S, May 8, 2006 - Hi Jon, The ultrafiltration systems looks like nothing more than a scaled down dialysis machine and probably functions in much the same way. I generally go to the hospital once a year for my bolus of IV Bumex then in most cases I leave the ER six to eight hours later. I have done that pretty much for the past six years. The ultrafiltration thingy looks scary. I think I like IV Bumex better.
     By the way, I have lost about 20 lbs of fluids since having my pacemaker/ICD implanted last Friday, April 28, 2006. The doctor says my heart seems to be working more efficiently thanks to the St. Judes Medical V-343 device. Isn't St. Jude the patron saint of hopeless causes? Hmmm, seems to be some kind of message there. bigheart@muchomail.com


Ben B, May 8, 2006 - Hi Jon, Since this ultrafiltration thing is sort of questionable to you, maybe you might post something about it on the alternative therapies page. I don't think it is critical anyway, as the best things about this site in my opinion are the explanations of standard accepted treatment and the chance for patient-to-patient communication. Just my 2¢ worth. bdbrinkman@juno.com


Sharon L's May 8 reply to Scott B's May 4, 2006 - Hi, I have been suffering from indigestion so I started taking an extra 10 mg Lasix at supper and it really helps! I asked my pharmacist about torsemide and they don't seem to sell it in Canada.
     Scott, can you check where you are - I assume you are in Ontario? I can't imagine why we can't get it here. Unless the manufacturer doesn't see a market here or something. I'm going to my regular doctor to get her to increase my dose, and I know it's Holter and echo time again. The pneumonia I had really knocked me for a loop and after 5 weeks I am still a bit woozy sometimes. yons@sasktel.net


Joy K, May 8, 2006 - Hi Jon, I just finished reading the literature on the ultrafiltration system device. I like the concept because it does not require the patient to be treated in an ICU setting, and doesn't effect your electrolytes greatly. Receiving potassium via a peripheral line versus a central line can be quite painful. The other huge difference is that blood pressure is not effected by this filtration device.
     So many times when given huge doses of diuretics to get rid of the fluid the first thing that happens is your blood pressure gets much lower. Then you need another drug to pump it back up. Then your heart rate shoots up becasue of the combination so you need another drug to bring it under control. After a short time your potassium levels decrease and then other not so great things can follow like volume depletion.
     When I had a bout with pulmonary edema the Lasix worked well together with CPAP. My blood pressure plummeted (never had high pressures to begin with) so dopamine was added. Then I threw up! Fortunately, I was still alert enough to rip the CPAP mask off first. I told them to hang a dobutamine drip but got the look from my fellow nurses to shut up. They hung a small potassium drip because after diuresing 3500ccs my potassium was low. My arm burned like heck and I couldn't stand it. I finally drank some awful tasting liquid.
     Now I was getting a little dry so another IV start was needed. I couldn't stand the thought of getting a central line. One arm they couldn't use (I had a mastectomy) since the veins were scarce but I had great nurses who knew how to start IVs. Do I believe it is for everyone for fluid overload? I am not too sure at this point. I would like to see some actual trials and find out what patients think who have been treated. I would also like to get input from nurses and what they think of this device. Sometimes the concept is great but the device isn't. Just a few of my thoughts. Thank you. Joy. pjkachel@aol.com
 
Jon's note: Good point. Just to clarify, IV Bumex is not just given in ICU but also in a standard hospital bed. My own blood pressure improved because there was less stress on my heart (I dropped over 20 lbs in a few hours). If Lasix drops your blood pressure, you definitely need another route since Lasix is a weak diuretic - just goes to show why I have to ask these questions - experiences differ!


Roger G, May 8, 2006 - Hi Jon, I visited the web site for www.chfsolutions.com and see that they are not promoting this for everyone. They are promoting it for folks who do not respond to diuretics and have a renal disorder. rogergthree@earthlink.net
 
Jon's note: This reminds me of BNP testing only being promoted for initial acute diagnosis and now it's pushed for everything. A manufacturer will always push for more "indications" as soon as possible to make more money.


Barb N, May 8, 2006 - Hi Jon, I think an alternative to loop diuretics would be really important for anyone with borderline or frank hyponatremia, as these diuretics increase sodium excretion. I know loop diuretics are contraindicated when there is frank hyponatremia, but I suspect a lot of CHFers get into a borderline low blood sodium condition when they use loop diuretics like Bumex. In that case the diuretics also seem to be less effective in getting rid of excess fluid.
     Ultrafiltration may provide such an alternative, which would be worth the additional invasiveness of the procedure, because hyponatremia (even mild) appears to be associated with increased mortality in CHFers. Another potential alternative may be vasopressin antagonists (like tolvaptan, which do not deplete electrolytes) - I not sure if the FDA has approved any of these agents yet. I'm looking forward to these drugs being available because I find the loop diuretics very debilitating, leaving me very exhausted even though my ability to breathe is improved. catzamillion@verizon.net
 
Jon's note: Good points.


Brian M, May 8, 2006 - Hello again everyone, I got my echocardiogram results and read the impression at the bottom of the report. It states one. Normal chamber sizes two. Reduced LV systolic function with ejection fraction of approximately 15% three. Severe global hypokineses four. Mitral inflow pattern consistent with diastolic dysfunction five. No significant valve disease noted. I was just on a Holter monitor last week for a day and see my cardiologist on the 9th of this month. Can anyone tell me what this echo report means and maybe why I have this strange feeling inside like something is very wrong? Thank you in advance for any help with this. God bless everyone! pipefitter5972000@yahoo.com


Gene G, May 8, 2006 - Hi, I had abdominal surgery last May. Soon after, I resumed normal activities my abdominal rectus muscles that were sutured together pulled apart, so now I have what is called an abdominal diastasis. I have recently been to a pulmonologist because my shortness of breath is more frequent even when I am doing all the right things.
     Also, I have never been able to get back to my former energy level and exercise tolerance from before the surgery. The pulmonologist thinks my pulmonary function (expiration ability) may be compromised because of the diastasis (my diaphram may not be operating optimally), thus contributing to my shortness of breath.
     Does anyone have any similar experience or any information that may help? Many thanks, Gene. gene.goorchenko@genzyme.com


Deb, May 8, 2006 - Hi, This is an update on my dad. His condition is holding steady. At his doctor's appointment, his physician was pleased that everything was stable, and decided to keep Dad on his current level of medication. His blood pressure, blood glucose, and oxygen levels were very good. The only problem is recurring attacks of vertigo that have nothing to do with his other conditions, but is a problem associated with his progressive nerve deafness. I sometimes wonder why he has to have all this stuff going on at once - it's not fair. I guess that's life. deb5@emcs.net


Paula D, May 8, 2006 - Hi everyone, I have been diagnosed with CHF. After a heart attack six years ago and a stroke after bypass surgery, I have been functioning fairly well. A few months ago I had a nuclear stress test and an echocardiogram which showed my heart had weakened from 37% to 30%. I still feel the same tired and some weakness intermittently, otherwise I am okay.
     I would appreciate knowing what class of CHF I am in and any other advice. My husband is an excellent care giver/taker and we will do anyhting that will improve my condition. Thank you. tdeeork@yahoo.com


Nancy P, May 8, 2006 - Hi all, Has anyone tried D-Ribose as written about in Dr. Sinatra's new book? Jon, have you heard anything about D-Ribose? nlp520@earthlink.net
 
Jon's note: Yes, I did extensive research on it awhile back but decided not to take it or add it to our supplements page. I think other supplements help us much, much more.


Sue S, May 8, 2006 - Hi, Does anyone know of a good cardiologist in Savannah, Georgia area who will help us decide about ICD implant and pacemaker implant for a diabetic with severe heart failure? Thank you. thornsenter@hotmail.com


Joey, May 8, 2006 - Hi, I noticed a comment that you had to watch when you ate if you are using Lasix. I had never heard any instructions relative to this. Could you enlighten me? ramblingrosarian@yahoo.com
 
Jon's note: It's not what you eat but when. Taken within one hour of eating, before or after, Lasix is far less effective. Two hours is better.


Henry T, May 8, 2006 - Hi all, As it is the second week in May, it must be time for my annual post. This week I mark 8 years of living successfully with CHF secondary to a diagnosis of cardiomyopathy. Thanks to the usual combo of meds and my ICD (I've been zapped twice in all these years) my quality of life is terrific. I'll be turning 60 in the fall and look forward to all the adventures of the next decade.
     Thank you to Jon and all who were here at the beginning for your support, your knowledge and for this web site. hrticknor@msn.com


Jon, May 11, 2006 - Hi everyone, The mailing list really isn't dead. <g> My new PCP and I are trying to decipher my weird symptoms and have decided on a lengthy plan that includes a rheumatologist and the possibility I may have lupus or another chronic, hard-to-diagnose illness. It fits most of my symptoms but there are some differences. We're working on it. In the meantime, I type most of the time with one numb hand or arm and enormous fatigue and pain, which has me on valium and a strong painkiller at the same time. Bummer, but hey - nobody said it was gonna be easy! ;-) It's not as hard to type this way as I thought, with some practice.
     Today, I finished the checking out with orthopedic specialists and saw my PCP and had a ton of lab work done. Nonetheless, I am pursuing two collaborations that will hopefully bring in more donations as we are seriously short on cash. I would like to thank all those who do contribute. You are keeping us afloat here and I am more grateful than you can know. Thank you. Jon.


Penny M, May 11, 2006 - Hi all, Here's the scoop on my echo last Tuesday. I just hung up talking to my new CHF doctor. He said he was surprised by how good my heart looked. He said my EF has come up from 30% to 40 to 50%. Then why am I feeling worse?
     He's suggesting I see a neurologist or I don't know what kind of doctor, thinking it could be be metabolic or it could be my lungs. Do we need to start looking for another disease here? I see my internist tomorrow morning and and I don't know what to expect. I have stopped taking the Zoloft, albuterol, and Azmacort since the echo. If these meds are raising my EF, it would not be good for my heart in the long run, because of the work load it's putting on my heart, right?
     I will see CHF doctor in 3 months. In the meantime, I will continue increasing the Atacand. I feel good about starting the Atacand and once titrated, we'll increase the Coreg. Has anyone ever had their EF go up, but feel worsened fatigue and then have the doctors scratching their heads and telling you that your heart function has improved and the fatigue isn't your heart?
     I was so surprised as 4 weeks ago I could hardly hold my head up. I am happy about the unexplainable increased EF, but it doesn't make any sense. Someone please help and tell me what is going on. Thanks, Penny. pmechler@midsouth.rr.com


Jon's May 11 reply to Penny M's, May 11, 2006 - Hi Penny, I've been hearing this for years, and experiencing it myself. I actually felt better with an EF of 15% than one of 55%. Please point out to your doctor that this is clearly stated in the official heart failure treatment guidelines and I quote, "Patients with a very low EF may be asymptomatic, whereas patients with preserved LVEF may have severe disability. The apparent discordance between EF and the degree of functional impairment is not well understood..."
     Heart failure affects so many bodily systems that heart output is only one small part of the picture and no one knows why. When heart function improves, the patient often does not. Systems affected include the endothelium, lung gas transfer, skeletal muscle function in multiple ways, nearly all neurohormonal systems, the heart muscle in multiple ways, testosterone level in men, growth hormone level, protein use throughout the body, and more. Don't forget about deconditioning. Exercise is absolutely critical for any CHFer who can manage to walk up one flight of stairs.
     If your CHF doc can't read the guidelines, maybe you need a new CHF doc. Of course, check into other possible causes, but this could be "normal" heart failure. It happens to many of us, including me. Jon.


Kris P, May 11, 2006 - Hi, I'm looking for advice or opinions regarding my 65 year old dad. He has been insulin dependant for 25 years with class 4 CHF for 2 years. Dad has been having a hard time breathing and his doc says he is not in CHF at this time. He put dad on oxygen and blamed the breathing difficulty on very thin blood from his Coumadin and hemoglobin being too low. Just curious as to what you all think. Thanks, Kris. kpstyling@comcast.net


Suzy B, May 11, 2006 - Hi everyone, I'm just wondering if someone can help me out. My daughter was born with a 5mm ASD in her heart and mild pulmonary stenosis 2 years ago. When she was 4 months old, she was retested with echocardiogram and was found on this occasion to have a 7mm ASD and still mild PS but had significant right ventricle volume overload. Her heart had apparently enlarged somewhat and she was placed on furosemide and amiloride.
     She went along okay for another two months but fell ill and another echo was ordered. On this occasion, her ASD measured only 3mm and her PS had diminished significantly. We were told she would not need another echo for another year and a half.
     About one year later she had her first menningoccal vaccine and was found in the morning with a very puffy face, edema around her eyelids - they were huge. I was concerned that it was her heart and asked for an echo to be performed sooner. Three different pediatricians listened to her murmur and all three said it was a serious murmur, graded a 4 or 5 out of 6. Well she had her echo today and just before the exam, once again they found a serious murmur. Much to our surprise, absolutely nothing was found. No hole, and no PS. They sent us home with no information at all. The scanographer was not a pediatric cardiologist.
     Afterward they said that the murmur they heard must be an innocent one. What I am very concerned about is surely they would know the difference to an innocent murmur and a serious one. How can this go from a serious problem to just nothing. Should I be seeking a second opinion?Would the echo have been correct or is it possible her problem is not picked by echo at all? bococks@xtra.co.nz
 
Jon's note: Either is possible. My urgent advice is to get a second opinion as soon as possible. No 4 or 5 of 6 valve problem is innocent, period, regardless of other findings. Be sure.


Michele F, May 11, 2006 - Hi all, I cannot tell you how encouraging it is to read about people who have been living with CHF for years. When my brother was first diagnosed with IDCM, the cardiologist in Florida told him to make end of life plans. At the age of 34, one doesn't normally think of this and my mother and I nearly fainted in the doctor's office. When he began treatment in New Jersey, the doctors began to talk about options - Options and treatments! Hallelujah! Something we did not hear in Florida. So, I just want to say how much it means to me to read about other people living with this condition. mmfoy@comcast.net
 
Jon's note: I'm in year 12, others here even longer.


Lorraine S' May 11 reply to Sue S' May 8, 2006 - Hi, Dr. Charles Drake is a very good cardiologist here in Savannah. He is not in a group, which makes it easier to reach him when needed. He took excellent care of my husband for 16 years. I know of a couple of others through friends. They are in large groups: Dr. Bottner and Dr Rathburn. You can e-mail me if you want more information. Lorraine. gandlsimpson@bellsouth.net


Donna V, May 14, 2006 - Hi Folks, We need some humor in our lives. I've never ever had fun in a doctor's office until the other day. I got a good dose when I agreed to participate in an FDA/Novartis study to dertermine if Diovan (ARB) would be beneficial to CHF patients along with beta-blockers and ACE inhibitors. The study will have me on the ARB but the dosage and times taken is the subject.
     To qualify for the study it seeems that one must be literate and compliant with CHF meds. I was checked out from stem to stern and the kicker was - get ready - I had to have a pregnancy test, the first in my life. The fact that I am 61, had a hysterectomy over 20 years and not a hormone in my body still required a pregnancy test. The nurses and techs also laughed but the criteria had to be met at no expense to me. God must be laughing too? I've not laughed so much in a very long time.
     I may yet get booted from this study as my low blood pressure might be borderline too low for another pressure lowering drug. The good thing is that I'm really being checked out and my cardio's office has my name and "me" rather than the "severe CHF patient"and I now have free samples of Coreg and Altace. It has taken me three years to develop a relationship with my cardiologsit. He now seems to know me and we can talk a lot better. I do like my CHF doctor but see him only once a year.
     Rejoice my friends that this 61 year old woman is not pregnant! Absurd! Donna V. dmvditty@aol.com


Charles W's May 14 reply to Penny's May 11, 2006 - Hi Penny and everyone, My EF rose from 30% (five years ago) to 64% (last November) and I feel worse than I did before. The docs discovered I have sleep apnea and for the past two months I've been wearing the CPAP mask with no positive results. I continue to feel rotten, tired, cranky and listless. It is depressing, I'll admit.
     On the one hand, you don't want to go out shopping for another disease while on the other hand, you're desperate to feel better. You're probably also angry. If my EF is so good why so I feel this way?! I don't want to close on a negative note. CHFers often do feel better over time. Nobody really understands why. Let's hope you're in that group. CClmbs@aol.com.


Ann Marie M, May 14, 2006 - Hi, I need some advice. I've had congestive heart failure for a year and my EF is 27%. I've already had 2 strokes, 2 heart attacks and have ventricular tachycardia. A couple of months ago I had a stroke. It didn't paralyze me but made me very dizzy both standing/walking and sitting. My balance is all screwed up.
     I started physical therapy last week after an evaluation and medical history. By the third session, I was breathing like I did when I was hospitalized for CHF and I was so dizzy during the different things they had me do which normally wouldn't have been that bad; mainly things like standing on one foot, getting up from a chair without using my hands and stuff like that. I had to stop and rest repeatedly during each of the exercises.
     I had told my physical therapy guy about my CHF and 27% EF, and he just wrote it down and continued. The workout was 50 minutes. When I left the building, I was still dizzy and had to pull over on to the side of the road until I could breathe better and not be so dizzy. I'm not a quitter but was this too much on my heart? OptimeAnn@Yahoo.com


Robert K, May 14, 2006 - Hello, I have been diagnosed with class 2 CHF for the time being; my left side of my third vave bleeds back into my lung. I am being treated but the process is slow. Does this mean that I am considered somewhat or completely disabled? If so, do I need to apply for disability to help fight this thing? firstplayerrobert@yahoo.com


Giorg, May 14, 2006 - Hi, I just talked to my cardiologist. I convinced him to let me try torsemide. I told him the advantages pointed out by Jon and others. Actually he thinks it is equivalent to furosemide as a medication, and he told me that he is sure because of some tests on his patients. But he agreeded that it is worth a try.
     My main problem with furosemide is that its effectivness is unpredictable. I take it on an empty stomach and sometimes I did not. My cardiologist told me that the most important thing it is not to take it after 2 hours from ACE and beta-blockers, because at that time the pressure in lungs is little so the effectivness of a diuretic is limited. Better to take it with an ACE inhibitor and beta-blocker, or many hours later. Giorg. giorgclunei@hotmail.com


Jon's May 14 reply to Giorg's May 14, 2006 - Hi Giorg, The Heart Failure Society of America states this quote from the official guidelines committee, "Oral torsemide may be considered in patients in whom poor absorption of oral medication or erratic diuretic effect may be present, particularly those with right-sided HF and refractory fluid retention despite high doses of other loop diuretics." You fit that description exactly and it supports a previous statement that torsemide may be better for those with stomach edema.
     The official treatment guideline state a distinct difference between the 2 diuretics as well. This study also points to a difference: chfpatients.com/meds.htm#torsemide. So it's not just us patients, doctors now know that they are not equivalent and that torsemide may work better in a whole lot of CHFers. Jon.


Kitt A, May 14, 2006 - Help! My beloved older sister was just diagnosed with severe CHF. She has multiple symptoms including apnea, shortness of breath, feeling of choking, edema, etc. She is a young 60 year old and she has virtually no health insurance. She is in a panic over this and so am I. She and I live 700 miles apart and other than chatting on the telephone, we don't see one another more than ever several months.
     She is in denial about her blood pressure. Hers is in the vicinity of 200/100 and she is not being treated due to lack of health insurance. She is also not really dealing with the reality of her symptoms. She thinks of her blood pressure as "a little high!"
     How can I help her recognize that unless she begins immediate care, she may face grave dangers? I must say that I am a younger sister and I am personally very dedicated to physical fitness and good diet. I want to help her but right now I am a cross between frantic over her health concerns and angry that she has been so irresponsible about her self-care. I do not want to lose my only sister, I love her very much, but I honestly don't know how to be supportive of her in an effective way. Any advice would be greatly appreciated. Dreamsilk@aol.com


Marty C, May 14, 2006 - Hi Friends, I have a quick question. I'm having significantly increased numbness in my hands, and my feet get cold and numb fairly shortly after lying down in bed. I'm 45, had heart failure for 5 years now, and I've been stuck at 35% EF for the past 2 years. I would say I'm exceptionally well compensated, still work full time and exercise at least 3 times a week. This numbness thing is interfering with my already fitful sleep, so I'm concerned about losing ground. Any ideas? Thanks and God bless each one of you. Marty. padre45@aol.com


Karen K, May 14, 2006 - Hi, I have back pain. Is anyone else having this or had this problem? kirby5022@comcast.net


Giorg, May 14, 2006 - Hi everyone, I forgot to ask to my cardiologist, how much stronger is torsemide then furosemide. On the Net I found torsemide is two to four times more potent than furosemide. But two is far from four. In your experiences, what is the number? I used to take 20 mg per day of furosemide so is 5 mg of torsemide is enough? When do I have to take torsemide, in order to boost the effect? In the morning with ACE inhibitors and beta-blocker? Anyway, today I took 5 mg of torsemide and it looked to me the effect was weaker then 20 mg of furosemide. giorgclunei@hotmail.com


Jon's May 14 reply to Giorg's May 14, 2006 - Hi Giorg, I don't know where your doc gets his information. Furosemide is now considered a twice a day drug for most patients (see the AHA/ACC official treatment guidelines) so obviously you're not always going to be taking it with a beta-blocker or ACE inhibitor since some of those are once a day drugs (fosinopril and Toprol-XL for example), follow? The official recommended starting dose for torsemide is 10mg once a day with a usual target dose of 20mg once a day, usually in the morning. It is 4 times stronger than furosemide. You really can't "boost" the effect of torsemide unless you add another drug.
     Remember this critical fact that all doctors should tell their patients: If you are not retaining fluid, your diuretic isn't going to be effective because it has nothing "extra" on which to work. We are not all always retaining fluid. It's an up-and-down thing. Diuretics are strictly to relieve symptoms so if you are not experienceing edema, the diuretic should not be taken unless you are absolutely "certain" that skipping a dose will result in edema the next day. Taking diuretic when you don't need it makes you extra tired and can bring on a resistance to diuretics in general.
     I hope this helps. Jon.


Joseph P, May 14, 2006 - Hi all, I had the Maze procedure. I am already feeling better with out the constant a-fib. I will keep in touch about my future health. Joe. chfeer@earthlink


Sandy N's May 14 reply to Michele F's May 11, 2006 - Hi Michele, I'm so happy your brother found a doctor who knew about CHF. It's not Florida, it was the doctor he first saw. I went through two doctors in Ft. Lauderdale until I found a CHF specialist in Clearwater, Forida who gave me more hope than I ever thought I could have. I'm in year 3 and intend to be around for years to come. Best of luck to your brother and family! bleuskiiisgrl@yahoo.com


Lynda W's May 14 reply to Michele F's May 11, 2006 - Hi Michele, Could you recommend a doctor in New Jersey who is treating your brother? jobsearch2004@optonline.net


Jimmie, May 15, 2006 - Hi all, I am to see my CHF doc about scheduling a defibrillator/pacemaker implant on the 8th of June. My 15% EF was the result on my last echo. I have reached all my target doses on Coreg and Zestril. My numbers and heart size haven't changed since February of 2005. They are really going fast and I am getting nervous.
     Are there more questions to ask, as they haven't given any more options to chose from? I am only 56. When I do this, is this forever or if things change do they take it out? Oh, by the way my diagnosis is BBB. Jimmie. jlr@mei.net


Charles W's May 15 reply to Donna V's May 14, 2006 - Hi Donna, I'm so relieved you're not pregnant. I'm wondering if I apply for the FDA/Novartis study, will I be required to have a pregnancy test? This would also be my first one. A pregnancy might explain some of my occasional morning nausa. Nothing should be left to chance. As you say, particularly when you're not paying for it. Charles W. CClmbs@aol.com.


Marty C, May 15, 2006 - Hi Jon, I'm reviewing carefully which supplements and amounts of each that I'm taking, and I read a comment you wrote about magnesium that concerned me. I hope you aren't offended, I so appreciate all of your work here - but maybe this is something worthy of another look and clarification. Where you comment on magnesium, you say: "I recommend taking 250mg a day whether you exercise or not. Large amounts will just give you diarrhea." Unlike everything else I read on your site, this conflicts sharply with what I read elsewhere about eating too much magnesium. At one site I read the following, "Too much magnesium can cause serious health problems including nausea, vomiting, severely lowered blood pressure, slowed heart rate, deficiencies of other minerals, confusion, coma, and even death. More common side effects from magnesium include upset stomach and diarrhea." Do you think I have a point, or am I just another pain in the butt CHFer? ;-) Marty. padre45@aol.com


Jon's May 15 reply to Marty C's May 15, 2006 - Hi Marty, No offense taken at all. In fact, readers are the ones who always catch my mistakes, not doctors who read the site. Hmmmm. However, as long as you don't take mega-doses (with oral over-the-counter magnesium, that's at least 750mg daily in my opinion), magnesium will indeed just flush out as diarrhea. IV magnesium is a whole different story but you can only get that by prescription in a clinic or hospital. IV magnesium is a very powerful mineral that is actually used as a direct anti-arrhythmic drug that works well. You'd have to take a massive amount of oral over-the-counter magnesium to approach the problems you mention. You'd have a serious case of the trots to warn you long before you got to that point. Jon.


Tracey H, May 15, 2006 - Hi, I was diagnosed with mitral valve stenosis and CHF about 3-1/2 years ago. I have for the most part been well compensated with my medicines. However, in a matter of 4 days, I have gained 10 pounds and I feel horrible. My lower legs and stomach are swollen and I feel like I am standing on my head. I am short of breath and felt like I was drowning when I woke up this morning.
     I know these are CHF symptoms, but my question is what could have triggered these symptoms? Why all of a sudden are my meds not "doing the trick." I just need a little feedback from someone that might have had a similar experience! Thank you! thicks@compascable.net


Jack D, May 15, 2006 - Hey everyone, I get my prescriptions from Rite-Aid so I don't know how other drug stores operate. Rite-Aid hands out a booklet with each prescription every time you get that prescription filled. Now I was just irritated because it was just so much more trash to fill up the garbage can so I just told them to keep it. Well I happened to look at one and they aren't just generic information on your drugs.
     Each and every one has your name, address, telephone number, birth date, insurance number, doctor's name and prescription information printed on it! So I can't tell them to keep them because they will go into the trash for some low-life to dig out and turn into cash. No!
     I have to bring them home and shred them. So check the garbage that comes with your drugs and if it has your life history printed on it then cause an uproar!! We have enough problems without some stupid policy from a bunch of morons at a pharmacy doing everything they can to promote identity theft. I'm mad and I'm going to make myself a constant pain at the drug store. maddjak@hotmail.com
 
Jon's note: I'm with you - go get 'em. I even use a magic marker to black out everything on my prescription bottles before throwing them in the trash as well as shredding all the accompanying material and boxes.


Cheryl C, May 15, 2006 - Hi everybody, I haven't posted much lately, but have been reading to keep up. I just wanted to mention something in case it hasn't been discovered yet by someone. At a local grocery store a while ago, I found low-sodium Ritz crackers, Wheat Thins, and Triscuits. They are actually very good, taste pretty much like I remembered without the salt coating on the outside. This past weekend I also found low-sodium Saltines. Is that an oxymoron? I've sent an e-mail to Nabisco thanking them in hope that they will keep making these products available to us. If anyone else is interested, you can go to their web site to e-mail them too. Cheryl C. cocojo86@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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