The paperwork never ends The Archives
February 1-15, 2004 Archive Index

Ken N's 2-3 reply to Sandy's 1-21     SSD experience and more
Kate's 2-3 reply to Sandy's 1-31     chemo induced heart failure experience
James 2-3     bread machine available
Roseanne's 2-3 reply to Nancy's 1-31     tried to e-mail you
Evelyn 2-3     does anyone have trouble with gas?
Lucia L 2-3     blood pressure & more getting me down
Craig H 2-3     seek CHF doc in Florida
Tom S 2-4     does anyone else get pain like this?
Evelyn 2-4     where are patients' opinons on doctors?
Laurie P 2-4     don't understand BNP test results
Roberta B 2-4     seek CHF doc in Salt Lake City
Nancy S 2-4     some good news & more
Katherine H's 2-5 reply to Tom S' 2-4     one possibility
Donna V 2-5     thanks to all, update & more
Sharon W's 2-5 reply to Lucia's 2-3     am in pretty much the same boat
Sharon L 2-6     update, information really helps
James 2-6     low sodium discussion group
Myrtle C's 2-6 reply to Tom S' 2-5     maybe try diet change to see
Tom S' 2-6 reply to Katherine H's 2-5     update & more
Sharon Williams 2-6     Coumadin and Coreg - seek opinions
Kelly's 2-6 reply to James' 1-21     Cincinnati CHF doc recommendation
Myrtle C 2-6     does anyone else have this problem?
Myrtle C 2-6     seek alternative to Norvasc
Joe S 2-8     does anyone else avoid doctors?
Davida S 2-8     if you're under 40 with CHF
Anne 2-8     why take Coreg forever?
Jon's 2-8 reply to Anne's 2-8     why take Coreg forever?
Tom S 2-8     gall bladder symptoms
Evelyn 2-8     update on problems with gas
Carolyn 2-8     intro, seek e-mail friends
Scott Brown's 2-8 reply to Tom S' 2-4     I had similar pain
Myrtle C 2-8     needlework link
Kate's 2-9 reply to Anne's 2-8     Coreg switching experience
Vicki J 2-9     seek ICD experiences
Katherine H's 2-9 reply to Scott Brown's 2-8     beware Gaviscon's sodium content
Dan S' 2-9 reply to Anne's 2-8     stopping Coreg experience
James 2-10     student loan question
Kate 2-10     seek pro-BNP info
Kate's 2-10 reply to Vicki's 2-9     implanted device experiences
Nancy S 2-10     good news update
James 2-11     seek work/quitting work experiences
Ruthie A's 2-11 reply to James' 2-10     discharged student loan experience
Jessica 2-11     seek advice
Valerie R's 2-11 reply to Evelyn's 2-3     burping problem, update
Hal 2-11     I'm moving to Arkansas
Carolyn K's 2-11 reply to Nancy S' 2-10     seek biventricular pacemaker experiences
James' 2-12 reply to Carolyn K's 2-11     biventricular pacer and more
Doug K 2-12     update, doctors & more
Nancy S' 2-12 reply to Carolyn K's 2-11     got your message & more
Jim R's 2-12 reply to Carolyn K's 2-11     biventricular pacemaker experience
Deb 2-12     could really use some suggestions
Jacky 2-13     how long does Coreg work?
Jon's 2-13 reply to Jacky's 2-13     Coreg's effectiveness
Barbara H 2-13     seek heparin before surgery experiences
Dan S' 2-13 reply to James' 2-11     working with heart failure
Valerie R 2-13     lower daily sodium suggestion is published
Andy P 2-13     seek experiences with altitude
Kate 2-14     expanding on my Coreg experience
Jon's 2-14 reply to Kate's 2-14     Coreg effectiveness
Jacky's 2-14 reply to Andy's 2-13     altitude with CHF experience
Cat 2-14     seek people with lung and heart problems
Doug K's 2-14 reply to Andy P's 2-13     altitude with heart failure experience
Patricia 2-14     working with heart failure experience
David Wilson's 2-14 reply to Jacky's 2-13     Coreg experience
Jon 2-14     seek chat room experiences
Jean Hudson's 2-14 reply to Barbara H's 2-13     surgery experience
Deb's 2-14 reply to Cat's 2-14     albuterol experience
Kate's 2-14 reply to Jon's 2-14     my case is pretty tough
Jon's 2-14 reply to Kate's 2-14     hang in there

Ken N's February 3 reply to Sandy's January 21, 2004 - Hi, About receiving Disability on the first try, yes, but I think the circumstances have to be taken into account: First in the hospital with CHF in 1996, then living for years on the borderline sort of, as my stats would indicate me to be eligible for SSD, but my general physical being was quite good. I could mow the lawn, sleep well, perform a job, etc. At that time I should have applied for SSD, but I did not. Then in spring of 2003, I had blood clotting and was hospitalized for 30 days and a real downgrade on my physical condition. Then I applied on my own with no lawyer, lots of supporting paperwork from my doctors, and SSD was approved right away with no problems what so ever.
     I am now preparing for my third hospital stay. I am not in a current state of active CHF, but my stats are so bad that every minute is uncomfortable. If I could do it all over, would I apply for SSD right away? You bet. One major problem now is that since I have the SSD - 1500 monthly for me and 800 monthly for my kids - I am no longer "poor" and the state stopped our Medicaid health coverage. The automatic Medicare coverage that comes with SSD has a 24-month waiting period with extremely few exceptions so there is this terrible gap one must survive. Additionally, Medicare B for doctors' coverage can then be purchased for 68 dollars monthly. For prescriptions, well, I am web surfing suppliers in Canada right now.
     That does not mean I am totally on my own if I go into the hospital now and rack up say a 20,000 dollar bill. Because then I could wait 30+ days and apply to state Medicaid for RETRO assistance in paying medical expenses. Perhaps the state would (after all the new paperwork of income versus expenses, blah, blah, blah) probably tell me that I have to pay about a 3000 dollar deductable and the other 17,000 would be handled by state Medicaid. Of course, it is all so complicated and everything is react instead of proact.

Kate's February 3 reply to Sandy's January 31, 2004 - Hi, Yes, There are many thousands of us who now live with chemotherapy-related illness. In my case, high dose adriamycin was the culprit. It led to cardiomyopathy with CHF, and a tainted blood transfusion resulted in hep C. I also have tremors from central nervous system damage and I know beyond question that certain areas of my brain were injured as well.
     Rarely does anyone escape chemo without repercussions. My doctors never mentioned the potential for damage either before, during or after. I think today most docs are more open about potential consequences. The bottom line is that 22 years later I am still alive and some days, even kicking. As Gilda used to say, "It's always something." Kate.

James, February 3, 2004 - Hi, I have a bread machine with a bad paddle. The unit cost $99 when we bought it a few years back. To replace the paddle is 10 or 15 bucks and would take 2 weeks. Since I'm low sodium and make my own bread, we decided to pick up a newer model.
     As anyone here in the know will affirm, bread is not only a staple but a common source of entirely too much sodium - averaging anywhere from 120 to 400mg per slice, depending on the variety. By making your own bread, you can enjoy great tasting bread with only a few milligrams of sodium per slice.
     There's nothing else wrong with this unit; it just needs a replacement paddle which can be ordered through the company. It's a Bread Machine made by ESalton. If anyone is willing to pay for the shipping and make arrangements to get the paddle, it's yours. I'll even give you my two best recipes for low to no sodium bread. Contact me by e-mail.

Roseanne's February 3 reply to Nancy's January 31, 2004 - Hi Nancy, I tried to e-mail you, but the listed address did not work. Roseanne.

Evelyn, February 3, 2004 - Hi, I have a personal question hopefully nobody will mind answering. I have DCM and CHF with an EF of 17%. Since I was diagnosed with CHF I have been watching what I eat, and I have been preparing all my meals with as little sodium as possible.
     The one thing I notice is that I have indigestion quite often, even bad gas bubbles, so now ya know I have gas. <g> I was wondering if there is any effect on the heart beat when you have this. It always seems like my heart acts funny when this is occuring.
     Also, I was wondering if anyone else has this problem and what should I do about it. Before my diagnosis I would just chew on a Tums but now I'm not sure if I should or not. I'm assuming all the veggies, peppers and garlic is what's causing this. I couldn't think of another way to ask and be discreet so if I've offended anyone I appologize ahead of time.
     Thanks for this site, Jon. Evelyn.

Lucia L, February 3, 2004 - Hello, I'm 51 years old and was diagnosed with CHF in the summer of 2002. I take carvedilol, Captopril, digoxin, Aldactone, and Lasix. I'm also caught between a rock and a hard place. The blood pressure meds sometimes make me feel like I'm keeling over. Last week my legs buckled for the first time in my life. I've told my doctor about this and there seems to be nothing that can be done. Either I take the meds or I don't - not much of a choice if I want to stay alive.
     I'm also dealing with depression, which I finally acknowledged when I couldn't get out of bed and didn't care if I bathed or not. I told my doctor about it and she immediately put me together with the clinic's psychiatrist. I don't think I can hold a full-time job anymore, I'm drowning in debts, and I know that part-time work won't pay the bills so I applied for disability and sure enough, was turned down. Next comes Round 2.
     I'll also need to declare bankruptcy to keep the wolves away. I don't know what the future has in store, but I'm glad for this web site and know that CHF is a condition that should be taken seriously. Thanks!
Jon's note: Consider switching from Coreg to Toprol-XL, which does not lower blood pressure so much but still gets the job done. It's cheaper too.

Craig H, February 3, 2004 - Hi, Does anyone know of a cardiologist in the Pensacola, Florida area who's specialty or subspecialty is CHF? The nearest I have been able to find is one (only) in Mobile, Alabama.

Tom S, February 4, 2004 - Hi, For many years I have had somewhat frequent attacks of a burning pain which is bilaterally symmetrical at the top of the chest and generally involves an area from the bottom to the top of the sternum. It is not inferior to the sternum and I pretty well ruled out heartburn a long time ago. There is not acid reflux associated with it and I rarely get classic heartburn so it is hard to identify exactly what is the cause of thise very debilitating burning pain in my chest. There is no obvious radiation of pain to my arms or neck, and I already know I have absolutely no blockages of the heart arteries or veins so that is ruled out.
     Sometimes this pain lasts for 5 minutes but the longest episode was about 2 hours. The average is about 5 minutes and can actually sometimes be obviated with a couple swallows of ice water or taking air into the stomach and intentionally belching several times. The ice water seems most effective, however it doesn't always work.
     I am curious if anyone else on this forum has experienced a similar pain and if they have, what was the diagnosis of their doctors. I have been told by one of my doctors that it could be caused by fibrillation, which I have a lot of, in which the heart is denied a proper blood supply and the heart is basically complaining about lack of oxygen. Keep in mind that my current EF is around 20% and I have been a 7-year idiopathic cardiomyopathy survivor. My other thought is that the pain could be caused by my heart stretching out, or fluid on the lungs. I wish I could nail it down because now I am told by my cardiologists to go to the Emergency Room the next time it occurs.
     A second item I would like to touch on is SSD and "normal" Social Security payments. My mother's-in-law benefit actually dropped below the payments she was getting on SSD when she was switched over to normal SS so I would not say for certain that the amount stays the same.

Evelyn, February 4, 2004 - Hi, Where would one search on the Internet for patient referrals good and bad about doctors and how would one word it? Take care, Ev.

Laurie P, February 4, 2004 - Hi everyone, I have question for anyone who might know. I had a BNP test done recently. I don't understand the results. The doctor said the results were 568 but everywhere I read about this test, the numbers sound so much lower. They are considering me in class 2 heart failure, but I am closer to class one. She also said that someone with severe heart failure could go up to like 20,000 to 30,000. I have read many web sites looking for similiar numbers, but I haven't succeeded. Anyone got a clue? Thanks, Laurie.
Jon's note: Make your doctor give you the units of measurement used in the results and post that - without units of measurement, numbers are always meaningless.

Roberta B, February 4, 2004 - Hi, Does anyone know of a CHF physician in Salt Lake City?

Nancy S, February 4, 2004 - Hi, I just thought I'd share some good news! Yesterday I went for an echo. I don't have the results yet but I did ask him if my heart is still as dilated as it was when they did the one in 2001. He measured it and said that it's nearly a centimeter smaller so I was thrilled. I wanted to share my good news with y'all and thought maybe it would help some of the newer members know that there is something to look forward to from taking all the meds and from getting pacemakers.
     I initially thought I had an ICD but found out recently that mine is a biventricular pacemaker. I also thought it had fired recently and when I went to have it interrogated the Medtronic lady told me that mine doesn't fire so I guess I just dreamed it. I was asleep and woke up with a big jerk which I have done before but this time it felt like it was coming from my heart. Everything was fine with the pacer so once again I feel like an idiot but I guess it is better to know. All this could have been avoided if my doctor had better informed me.
     I hope this will help you all to realize that it's just like Jon says: "You are responsible for your own health care." I'll be asking more questions and have learned that it's my responsibility to ask and then if I don't get the right answers or enough information I'll know it's time to find another doctor who will work with me.
     Take care and God bless you all. Thanks again Jon, for giving so much of your time to make us all better informed. I'm sure you've saved many lives here! Nancy.

Katherine H's February 5 reply to Tom S' February 4, 2004 - Hi Tom, Although it doesn't fit the usual symptoms, have you ever considered gallbladder problems?

Donna V, February 5, 2004 - Hi, Thanks to all who so kindly and personally responded to my January 29th post about my Coreg dosage. It has been amazing! My doc did agree that my blood pressure was pretty low per my own charting and agreed that I could cut back my night dose to 12.5mg. It's only been two days but I've not had the desire to crawl back in bed after my morning meds. It may be a mental thing but whatever makes me feel better suits me.
     Today, at rehab the nurse joked that I was almost hypertensive with a blood pressure of 103/61. The 78/39 had really bothered me and I really wanted to go there today. I worked more and longer than I have in awhile. I've started on some new weights and like that. Again my doc confirmed that my heart is lousy but that I'm well compensated. He laughed when I asked him to tell me "I'm wonderful" but he did. I felt more involved in the conversation with him this time, all thanks to this site. I again asked him about CoQ10 and I may try it anyway. His answer to all was, "... don't know, no proof."
     Jon, again I thank you for your dedication to this site. It's the best use of the Internet I've ever known. Donna V.

Sharon W's February 5 reply to Lucia's February 3, 2004 - Hi Lucia, I am in pretty much the same boat. I am 29 with 2 young girls and financially anorexic. This site is the only place I have found any genuine assistance. Take strength from the knowledge you aren't alone.

Sharon, February 6, 2004 - Hi, I spent the other night in the ER, or Club Med, I guess. I was having some chest pains but after they looked at my blood and had me on a monitor for 8 hours, my cardiologist came and sent me home. He told me I had the best heart of anyone with IDCM he had seen in a long time. He reminded me that my angiogram (cath) showed no blocked arteries. He thought it might have been intercostal muscles in spasm because of the way I sleep and my posture. I have scoliosis, lordosis, kyphosis and use a CPAP.
     I just wanted to join in saying what a great site this is, and how helpful all the reading material is. Very early on, I wasn't in control of my pills and was forgetting my potassium. Not good. Jon recommended a dosette and some of the reading material described my loss of appetite as possibly related to low potassium. Luckily I started up again and felt better quickly. Thanks, Jon.

James, February 6, 2004 - Hi, There is a Yahoo group called "Salt Assault" that is dedicated to discussion of low sodium life. It's a bit slow but there are a few folks there discussing low sodium life styles, health conditions requiring the adjustments, recipes, etc. It would be nice to see the group take off, so I thought I'd advertise it a bit here. To join the group, go to and click on the join button. There is the potential to make this a great resource.

Myrtle C's February 6 reply to Tom S' February 5, 2004 - Hi, I think Katherine has a valid suggestion. Stop eating anything containing fats, as this could tell you if your gall bladder could be the culprit. I pray you get more tests for this problem.

Tom S' February 6 reply to Katherine H's February 5, 2004 - Hi, I would pretty much rule out gall bladder on several levels, including the fact that I am blessed with a low (normal) cholesterol count, and the symptoms are not the same. I got a call back from my cardiologist who has recommended a full series of cardiac function tests over the span of two days early next week. Who knows, maybe that will give me an answer to this long standing problem.
     One of the bad things about living with idiopathic cardiomyopathy is the feeling we as patients are kept pretty much in the dark about the prognosis and sometimes diagnosis. I told my daughter the other day I feel like I have been waiting for the cable television man for the past seven years. Thanks for the input - I will keep you advised via this forum.

Sharon Williams, February 6, 2004 - Hi, Regarding Coreg, I have every possible side effect (from Coreg) mentioned on this site, but I am also having a very difficult time keeping my INR stable, even though my diet is. This is not mentioned in any literature. My Coreg dose is being increased very slowly and I am only up to 6.125mg twice a day. My asthma is worse, my pulse is always 60 (the low setting on my pacemaker) and I have rare lightheadedness. I gave up on Toprol-XL - with no side effects during use - for constant blood work and Coumadin adjustment. I'm all for a longer life but this is not what I expected. Incidentally, my food allergies have come back with a vengeance. Any comments?

Kelly's February 6 reply to James' January 21, 2004 - Hello, My name is Kelly and I am a 40 year old with cardiomyopathy. Dr. Lynne Wagoner at UC is an excellent doctor. She has a great manner and is very knowledgable. The UC Heart Failure clinic only treats those with heart failure and heart disease. I highly recommend her. God bless you!

Myrtle C, February 6, 2004 - Hi, It seems to take much longer to get over even mild illness, such as rhino-viruses and minor respiratory problems. Before CHF, I would take a week or 10 days to recover. Now it keeps me down for much longer. It goes way past fatigue and being tired. This happened to me 6 months ago. I saw my PCP who prescribed synthroid. When the test results came back (I always ask for a copy) it showed no low thyroid. Within another week I felt more normal and now it has happened again. Does anybody else have this problem? I don't presume to be the only one with this problem. I am tired of dragging around even more so than "normal."

Myrtle C, February 6, 2004 - Hi, I have a question about Norvasc. My cardiologist did an ICG and found that my SVRI and SVR were both very high. Others, including ACI, VI,CI, etc,..., were low. He interpreted this to mean that I needed to double my Lasix to 40mg and he put me on 2.5mg Norvasc to dilate my blood vessels. This did help with my SOB and chest pains. The second ICG test showed an improvement. I also felt better than I had. He then doubled the Norvasc and my old partner depression became worse. I have since stopped the Norvasc on my own because I can't see him for another month. I know! Doctors are sooo busy. Is there a substitute for Norvasc? I take 5mg Coreg and CoQ10. Thanks!
Jon's note: If it is just to dilate blood vessels, you could think about nitrates or alpha-blockers although I haven't researched the second suggestion.

Joe S, February 8, 2004 - Hi, What a fool I have been! For almost a year now my ankles have been swollen off and on. I avoided my cardiologist, because I was sure they had been fixed by my aorta valve repair. To make a long story very short, I am now on 160mg furosemide and 2.5mg zaroxlyn twice a day. My cardiologist even verified what I had was common in 30% of his patients and could create paranoia. He even had a name for this. Any comments from anyone would be appreciated. Joe S.

Davida S, February 8, 2004 - Hi, If there is anyone out there under 40 with CHF, please feel free to e-mail me. My husband was in this boat and we have many blessings and inspirations to share. He is now back to work with an EF of 55% to 60% - this from an all time low of having an EF in the single digits. It was a long, scary haul, but we made it. Please feel free to e-mail me if you need some inspiration.

Anne, February 8, 2004 - Hey Jon, Thanks for all your efforts on this site. I have learned so much, become a better patient, and ultimately am feeling better because of you. Thank you!
     You and others often mention that Coreg is a lifetime drug. I know there is a belief that one can do worse when going off it. I was on it for 7 months without a diuretic and had a horrible time with liver edema, diarrhea, etc. I crashed and had to go off it. Now that I understand the disease a little better, I am considering trying it again. What exactly do you mean by it being a life time drug? Thanks for your thoughts!

Jon's February 8 reply to Anne's February 8, 2004 - Hi Anne, First, it can be difficult going off a beta-blocker without suffering "rebound" effects from your beta-adrenergic system, including very fast heart rate. Second, stopping it can cause regression back into acute heart failure and in some patients could increase the risk of a heart attack. See,, and for starters. Jon.

Tom S, February 8, 2004 - Hi, It was suggested that gall bladder may be the cause of my upper chest pain. After checking around the Net for gall bladder symptoms I came up with some fairly common symtoms that aren't really too close to what I experience, including: Fever, pain in the right upper abdomen under or below the rib cage, ingestion of fatty foods that produce pain in the abdominal area (if a chronic problem), mild jaundice (may be noticed in the whites of the eyes), enlarged and tender area detected by touch just to the right below the rib cage. Vague abdominal pain is possible with chronic gall bladder conditions.

Evelyn, February 8, 2004 - Hi, I did find one suggestion about gas bubbles - to drink cinnamon tea once or twice a day. I tried it and it sort of worked for a short time, which did make me burp. I went to see my CHF doctor's nurse on Friday and she suggested either Tums twice a day or Pepcid once a day. Since Tums are cheaper, I will stick to them for now and am laying off the spices a little. I hope everyone is having a good day, Evelyn.

Carolyn, February 8, 2004 - Hi, I am 43 years old. My twin sister had a heart transplant and died at age 38. Now here I am with the same stuff she had - CHF with an EF of 30% and asthma. I never smoked although my sister did. I have an ICD/pacemaker, atrial-fib, and ventricular tachycardia. I have had 2 ablations. This is just the heart stuff. I also became hyperthyroid because of a drug called amiodarone (Cordarone). I was feeling pretty good before this. Now after being in the hospital 10 times this year I am worn out but keep hanging tuff. I am a disciple of Jesus so I have no choice but to trust in Him. If you need a friend I would enjoy writing to you. Carolyn.
Jon's note: Make sure you really have asthma and it isn't CHF symptoms being misdiagnosed! This is important because some asthma meds can aggravate CHF.

Scott Brown's February 8 reply to Tom S' February 4, 2004 - Hi Tom, I had something almost exactly the same. My pain ranged from uncomfortable to nearly unbearable. I went to an Emergency Room one night. I did have a few phantom pains as well but nothing specific. In the ER they took some blood tests, x-rays, etc but they found nothing. About 3 hours after it started, it stopped. I have not had this problem in any serious way in over a year now. I am 34 years old and my arteries are not blocked either.
     I believe this was related to heart burn. I would get temporary relief from a cold drink. However, the pain would usually come back a few minutes later. I used Gaviscon and this helped a lot. If the pain is worse lying down (which is what I was finding), I think you are on the right track here. I found I had to cut back on Slow-K and get my potassium other ways.
     Regardless, once I got rid of the problem, it has threatened but never really come back, and nowhere near the degree I had it for about 6 months. Good luck. Scott Brown.

Myrtle C, February 8, 2004 - Hi, A woman contacted me through this board for links to clips for needle work. I have since lost her name and address. If she still reads this message board, the link is

Kate's February 9 reply to Anne's February 8, 2004 - Dear Anne, I began CHF therapy with metroprolol, was phased off that, then switched to Coreg and was eventually phased off that, then went to lopressor and was phased out of that and am now on Toprol-XL. My cardiologist is considering reintroducing Coreg should the Toprol-XL become ineffective.
     I am sure bad reactions can and do occur, but none of my cardiologists have ever mentioned that as a possibility and I have never had any ill effects either stopping or starting a beta-blockers. I have heard from two cardiologists that Coreg does not always remain effective and lots of patients are taken off and put on other drugs. Some have, at a later date, been reintroduced to the Coreg.
     Just my story. Certainly look at all the info and discuss it thoroughly with your cardiologist. Kate.

Vicki J, February 9, 2004 - Hi, I have only had my ICD for about 3 weeks. Two sharp pinching pains woke me up this morning. Is this what it feels like when the ICD adjusts your rhythm or am I just being overly sensitive? Thanks, Vicki.

Katherine H's February 9 reply to Scott Brown's February 8, 2004 - Hi Scott, If you have CHF be very, very careful of Gaviscon. A single tablet has 1,300mg of sodium - almost a daily total for anyone watching salt intake. Katherine.

Dan S' February 9 reply to Anne's February 8, 2004 - Hi Anne, My experience with Coreg was horrible. It was the worst drug they have put me on for side effects. My symptoms included extremely low blood pressure, fainting spells and general ill feelings. I also believed I was getting worse because I felt so tired and that sent me into a depression. Before long, I was having seizure-like spells so I was in the hospital on the epileptic ward being studied for a week.
     Meanwhile my wife was jumping up and down telling the docs it was from Coreg. They would not listen. She posted a message here in August of 2000 and another patient said he had the same symptoms and it was Coreg affecting him. By the time my wife got back to the hospital determined to make them stop my Coreg, the doctor had already made that decison an hour earlier.
     I had to stay in the hospital another week since they stopped it cold turkey. My heart did hit high rates of 125bpm. The doctor gave me 200mg amiodarone (Cordarone) after that. I never believed I needed amiodarone, I just thought it was a withdrawal symptom from the Coreg. Now the doctor has cut the amiodarone down to 1/2 tab per day (100mg) because it was wrecking my thyroid. So with 1/2 tab and thyroid med every other day, my thyroid tests have been in the normal range for 3 months now.
     Coreg does not have to be for life, many people can't tolerate it. I was on it for 5 months and it drove me crazy. You just need to be monitored very well with that drug during starting and stopping.

James, February 10, 2004 - Hi, Has anyone had any luck getting student loans discharged?

Kate, February 10, 2004 - Hi, I am just wondering if anyone has seen any article on ProBNP testing. I mentioned it here once before, but have now learned that our local labs have stopped doing BNP testing and will only do ProBNP. Since it is, according to the lab I spoke with, becoming the norm, I'd like to learn more about what the numbers mean. The lab report does have my number isolated as being "high" but I have no idea what that means. How high can they go? I've searched my regular sites and can't find a thing on it. Kate.
Jon's note: I have e-mailed Biosite Diagnostics to see what they say. See for more.

Kate's February 10 reply to Vicki's February 9, 2004 - Hi, Lots of strange things happen the first few months after receiving a device implant. Nerve endings are sending you some signals that they don't like being disturbed. I heard a pulse whenever I put ear to pillow, was sensitive to pulses in my fingertips, and find the cold makes my implant site ache like a bad tooth.
     Everyone has their own personal experience with these things because our bodies all react in different ways. I also had to buy new bras that had wider strap area over the wound for comfort. It has taken me six months to be able to do a full upward arm stretch without discomfort while others are back in the gym as soon as the doc says it is okay.
     You'll know if something is really "off." Trust your instincts. Watch for swelling, redness, numbness and excessive tingling as the main bad things. I hope the device is actually helping you feel better heart-wise. Kate.

Nancy S, February 10, 2004 - Hi, I just had to share my latest good news with all of you. Today I went to the CHF doctor and he took me off my Lanoxin, potassium, and Lasix. Since I haven't been retaining any fluid I don't need the Lasix right now and he said that the Coreg, lisinopril, and spironolactone are the main ones that are helping me now.
     My blood pressure runs low anyway so it's better for me not to take the Lanoxin - today it was 97/54. My echo showed that my EF is 35 to 40%, and as I said the other day, my heart muscle is going back to normal size. He summed it up by saying he is very pleased and that I've gone from being a transplant candidate to nearly normal since I got my biventricular pacemaker (CRT pacer) and the right meds.
     I just wanted y'all to know that there is hope out there and how much the right treatment can do for you. God is good! Nancy.

James, February 11, 2004 - Hi, I am interested in hearing stories of folks with CHF and their work/career lives. At what point did you feel you were unable to continue working or managing a career? What criteria helped you make this determination? On the flip side, I'm interested in hearing stories of folks that have continued to work. Thanks.

Ruthie A's February 11 reply to James' February 10, 2004 - Yes James, I have successfully gotten all my student loans discharged due to permanent disability. You have to jump through several hoops, including getting your doctor to fill out a couple of forms regarding your condition but it is do-able. You also have to verify your income and its source for 3 or 4 years prior to your application. Part of that information comes from you and part comes from an IRS report.
     Once your paperwork is complete and you are conditionally accepted for discharge, your entire package is forwarded to Washington DC, where a final determination is made. The only drawback to this process is that if your loans are discharged, you can never apply for federal student money again. So if you want to go to school, think hard before requesting the discharge.
     Feel free to e-mail me if you have any questions, or just need some support during the application process. Ruthie A.

Jessica, February 11, 2004 - Hi, Why would a 78 year old person's heart rate go from 52 to 124, with blood pressure of 186/89 and bibasilar rale, complain of nausea and no chest pain after taking Lasix? His medications are capoten, cardizem, transdermal nitroglycerin, isordil, Lanoxin, theodur and aspirin.

Valerie R's February 11 reply to Evelyn's February 3, 2004 - Hi, I just got back from a visit with my cardiologist and all is well. While I was there I started my continual burping and while it is not loud, he could hear it. He says he hears it quite often from patients. It is most probably the medicine. I take so much that if you shook me, I'd rattle. Then he pointed out that the medicine is working - I'm stable and have no SOB, I can sleep at night and have not gone to the hospital in 10 months. Basically, it is the old "live with it."
     I do take Tums (2 tablets BID) but they are for calcium and simply do not seem to help. Evidently most other medicine for heartburn will interfere with one or another of my meds. Even Tums needs to be taken away from digoxin and Coumadin as it absorbs them.

Hal, February 11, 2004 - Hey gang, I hope all are healthy and happy this winter and looking forward to spring. I'm the guy that doesn't converse a great deal about medical issues as opposed to financial ones. One disability check is pocket money for most gentlemen my age in this area where I am living. Hence I'm moving to Hot Springs, Arkansas! I want all you lovely folks in that area to please e-mail me as soon as possible. There was one man named John that was corresponding with me but I managed to lose his address.
     I'm pretty excited. I will have my life back and not be a burden to my family. Hot Springs has a growing retirement thing going on, so there are good health facilities, docs, etc. It's advertised as the Natural State and looks beautiful - a good place to get healthy and relax. Maybe I'll learn to golf. I won't have to learn to eat catfish, though.

Carolyn K's February 11 reply to Nancy S' February 10, 2004 - Hi, They are talking about putting in a biventricular pacemaker. On the other hand, I am only 43 and one of my doctors say he does not want to use all his cards. I feel bad, I feel swollen and I am on Coreg 6.25mg twice a day, 40mg Lasix twice a day, Lanoxin 0.25mg daily, potassium twice a day, and some other meds like protonix, Xanex, synthroid for my thyroid, and oh yea, Aceon to lower my blood pressure as low as possible (it already gets low except when I go to the doctor).
     I don't really want to do the heart transplant thing because I have 5 kids, from 2 years old to 17 years old (adopted the younger ones). My twin sister died after a transplant so I have her kids and 2 of her grandchildren. I just can't do much. My EF is 30%. I just want to feel better.
     Tell me about the biventricular device. I stay in a-fib and I feel so bad, I don't know if my body needs rehab or it is my heart. Now I am crying. I really trust God and have been through so much over the last 5 years. Can someone tell me something to help? I am really having a small pity party; my God does not want me to feel like this. Fear does not come from Him! Carolyn.
Jon's note: Don't forget to ask (e-mail) people who list a pacemaker on their Me Too! listing.

James' February 12 reply to Carolyn K's February 11, 2004 - Hi Carolyn, I have a biventricular pacer with CRT enabled. The process itself is no big deal, although there's a bit of convalescence following, of course. I've posted on it here in the past (search The Archives) and if you like, I'll send you a text file I put together that pretty much tells my whole story. It's long, but it might help put you at ease a bit.
     Two things to note: If you're not seeing a CHF specialist, get a second opinion from one (and consider switching to one); Secondand it's more of a question - are you on a low sodium diet? Low sodium means a great deal more than just not using table salt - it's a whole way of eating. Canned, boxed, and jarred foods pretty much go out the window as processed foods are particularly high in sodium. If you're not on a low sodium diet or if you're still eating processed foods, then this might account for your swollenness and some of your problems.

Doug K, February 12, 2004 - Hello Jon and to all of you, Some of you who may remember me from posting in the early years of Jon's Place. I just wanted to let you know that I am doing as well as possible, and that is pretty good compared to many others. Still, much has changed in my life over the last 3 to 4 years, some good, some bad, but just like everyone else.
     My first wife and I divorced in 2002 and I have remarried since then. I have been diagnosed with a couple more things since then as well. I will send you an e-mail soon Jon with updates whenever you feel up to doing it. I am going to see my new (3rd visit) cardiologist next week. I had gotten another doctor after my first cardiologist retired and you know what? This guy was a miracle worker - after 9 years of being diagnosed with DCM, high blood pressure and numerous other problems, this guy tells me that there isn't any problem with my heart other than I am out of shape.
     My first doctor had told me that my heart appeared to be getting larger just before he retired, and that I was also getting mitral valve regurgition. Forget all that, the second doctor said there were no mitral valve problems. Forget about the shortness of breath,chest pains, and other symptoms; forget about why was I taking all those drugs for 9 years - he had cured me by proclaiming me healthy - right! I ordered up my file and went through it, and darned if my second doctor wasn't wrong: I do have mitral valve regurgitation. I dropped him like a bad habit and chose another doctor.
     My new, more experienced doctor looked at my EKGs from the last 2 to 3 years and told me that he thinks I may have had some small heart attacks. He thinks he sees right bundle branch block problems from scarring in the EKGs and PVCs. He put me on a beta-blocker and ordered up another cardiolite stress test, echo and blood work. I am to get the results when I see him next week. Until then I won't know exactly what they found, if anything, but since they haven't called me in, I guess I am doing pretty well, eh? ;-)
     I am noticing that I get dyspnea quicker than before and somewhat more severely but I have read that it takes some time to adjust to beta-blockers in the first place. I hope all is going well for you all and wish everyone the best in their fight with CHF. Bye for now, Douglas Knuth, now age 48, diagnosed with dilated diastolic cardiomyopathy at age 39.

Nancy S' February 12 reply to Carolyn K's February 11, 2004 - Hi Carolyn, I got your e-mail and replied to it. If I can be of any help to you or if you just want to talk, feel free to e-mail me anytime. Good luck!

Jim R's February 12 reply to Carolyn K's February 11, 2004 - Dear Carolyn, If your heart is enlarged and your doctor would like to put in a biventricular pacer, I would highly recommend it. Make sure they add a defibrillator while they are at it. I've seen many people improve considerably after receiving the synchronized pacing therapy of a biventricular pacer, making their lives much more enjoyable. I went through this and temporarily benefited from it. When my doctor suggested this as the next step I insisted on having a pacer with a defibrillator.
     As happens with many CHF patients, my heart continued to deteriorate. In January my defibrillator saved my life 19 times in a 4-1/2 hour period. This was after 14 months of the defibrillator not being needed. So I would insist on that added feature, and everyone please be careful about your potassium and other electrolytes because having them be off can be fatal. Take your diet seriously.
Jon's note: Just be sure you fit all the patient selection criteria for a CRT pacer before getting one! See the pacemaker page.

Deb, February 12, 2004 - Hi, I have posted here occasionally, most recently regarding my daughter and kidney pain, I think sometime in early January, I didn't look for it. My 16 year old has DCM and she has a biventricular pacemaker/ICD. Her Coreg dose was increased to 25mg twice a day on January 2nd. She has felt terrible ever since. She was having her normal side effects from an increased dose: Back pain, dizziness, stomach complaints, SOB and chest pain but they never really got better. After 2 weeks we took her to the ER because of chest pain and SOB. We were told that she had pleurisy. They gave her 800mg ibuprofen. Then her stomach started to swell and hurt and she unless she kept something in her stomach she was nauseaus. I was told to take her to an internist. The internist said to stop the ibuprofen and take her to a gastro doc. Her back pain now seemed located in the kidney area and she thought that her output was decreased even though her input stayed the same.
     We looked up info on Coreg and Lasix and found that they can make a person prone to kidney stones. We called and made an appointment with a urologist. They also suggested we see nephrologist (kidney doctor). The nephrologist ordered tests, which all came back normal. The urologist said that the location of the pain would indicate something going on with the kidney but they aren't seeing anything and left it at that. He said it could be muscle-related coming from Coreg. I called the cardiologist regarding this. They have refused to see her all along stating this is not a cardiac issue. They said to decrease her Coreg back down to the 12.5mg twice a day and see if her condition improves.
     She has not been to school since before Christmas. Along with the kidney pain, she has what she says feels like arthritic pain - pain in her bones. Is this what others have experienced? I don't know what to do with her. We have an appointment with a gastro-doc on the 25th although I don't know how back/kidney pain can be caused by a gastro thing. Her stomach bloating has improved since stopping ibuprofen.
     I am just tired of running her to doctors, who can't find anything wrong and refer us to see someone else, especially if this is from Coreg. Her heart has improved, though I don't really know how much because we switched doctors also. Her original EF was 18% but the new doc uses FS instead and I don't know if there is a correlation between the two. (Jon's note: If this is indeed fractional shortening, get another CHF doc because this one is seriously behind the times.)
     They tell us her heart is just about normal in size. Also, she has gained weight while on Coreg. The cardiologist told us to give the lower dose about 4 days and see how she feels. I am at the point where I want to take her to the ER and tell them to admit her and keep her until they find out what the heck is causing this pain. She has missed 6 weeks of school now and is stressing about how she will ever catch up. She takes mostly honors classes.
     Well, I have gone on much longer than I planned to. Any information anyone can give would be appreciated. Thanks, Deb.
Jon's note: Pain means something is wrong - if it takes admitting her to a hospital to find the cause, do it! A university/teaching hospital would be best - even better if it has a CHF clinic affiliated with it.

Jacky, February 13, 2004 - Hi, A sudden thought: How long is Coreg effective? I realise that is too broad a question. Do the benefits change or last forever? It works so well for me, when I have a bad day I get panicky!

Jon's February 13 reply to Jacky's February 13, 2004 - Hi Jacky, Don't panic. ;-) Doctors don't always speak the same language we do and that leads to a lot of misunderstandings. When Kate said 2 doctors told her Coreg does not always stay effective, they were not giving enough information for most of us to fully understand what they meant.
     CHFers tend to have a rise in blood pressure after years on Coreg. To date, this has not been a big issue because the rise is not dangerously large and because ACE inhibitors also lower blood pressure. If it becomes an issue, your CHF doc can simply add hydralazine, which is effective, cheap, and a drug you can stop without rebound effects. This is what I am assuming those docs meant by "not staying effective." I've been on Coreg since 1996 or 1997 and it doesn't worry me. ;-)
     Remember - Coreg's main role is not blood pressure control in heart failure patients. It has many actions, all useful to us. That's one reason it is preferred over most other beta-blockers. Jon.

Barbara H, February 13, 2004 - Hi, I'm curious if anyone has experienced the following: My dad, who has CHF and has experienced a TIA, is scheduled for cataract surgery in about 2 weeks. His cardiologist has decided to switch my dad over to heparin starting a few days before the surgery. Has anyone had to make the switch from Coumadin to heparin due to upcoming surgery? Any advice or comments would be greatly appreciated. Thank you. Barbara.

Dan S' February 13 reply to James' February 11, 2004 - Hi, Regarding work, if you feel wiped out from doing your job, it's time to go. It's very unhealthy and your heart can't heal and provide maximum results if it is tired. If you think you need to work, find a job that is physically and mentally comfortable. There are jobs that aren't demanding on you. They may not pay the money you are used to getting but they allow you to work if you want to do so. If you feel challenged and stressed because of your reduced heart function, I think you should let go of that job fast.

Valerie R, February 13, 2004 - Hi, The American Public Health Association is pushing for the sodium in processed foods to be halved within 10 years. The new guidelines mean "the food industry really has to take this issue much more seriously now," said Dr. Stephen Havas of the University of Maryland, who is leading that call. The new 1500mg daily sodium intake is the level for healthy younger adults. Because blood pressure rises with age, the new report says people over 50 should strive for 1300mg and 1200mg for those over 70. Wow!
Jon's note: When the actual government guidelines reduced daily sodium to a suggested 2400mg daily a couple of years ago, no one paid attention. Do you think this will be different?  <g>

Andy P, February 13, 2004 - Hi, This is my first time here. I was diagnosed with cardiomyopathy and CHF 12/31/03. I've been on the usual medicines - Coreg, Lanoxin, lisinopril, furosemide, spironolactone - and feel pretty much 100% normal except for a few side effects and my imagination.
     I've been planning a trip to Wyoming's Wind River Range this summer and was wondering if anyone knew anything about altitude and CHF? The Wind's are at 10,000 to 14,000 feet. I'm a long-time hiker who has hiked and climbed at this altitude many times, but all pre-CHF.

Kate, February 14, 2004 - Hi, Just to clarify what I meant when I said Coreg ceased being an effective drug for me, I meant it literally stopped working for me. Within 2 weeks of beginning to use Coreg I felt like my CHF had disappeared. For a year my EF climbed and I felt the best I had felt since before chemo some 20 years earlier. This "high" lasted about a year, then I began to notice fatigue, a rise in blood pressure and as I suspected, my EF gradually returned to the mid-20s.
     When I spoke with my pacemaker rep about my lack of response to the pacemaker, he said it was unfortunate because many people say they react to the pacemaker with the same dramatic results seen with Coreg. It is not uncommon, he said, to hear people say the impact from the Coreg is short-lived while the response to the ICD is long term.
     Again, every single person reacts differently. I don't say this to scare people, but just to make them aware that it can and does happen. I've also been told that people can be taken off the drug and reintroduced to it at a later date with effective results the second time around as well.
     I don't believe any drug or device is a panacea and I am always prepared to have to make changes. Lasix was effective for me for a year also, then it just stopped working. I've been using Bumex for 9 years with no problems at all. It is all about chemistry and each of us is unique. The one thing I've learned is that is pays to be aware but not scared when it comes to meds. Kate.

Jon's February 14 reply to Kate's February 14, 2004 - Hi Kate, I disagree with your device rep. He is out of line in my opinion saying such a thing, but it is not unusual to hear one industry rep talk down the therapy of another industry - it's called salesmanship. <g> Notice how he played up his own industry's therapy as better than beta-blocker therapy even though the literature doesn't support that.
     In relation to the number of CHFers on a beta-blocker, few see much decline in drug effectiveness overall in the first 5 years. I add the time frame because there is little experience yet with CHFers on beta-blockers beyond 5 to 6 years. ACE inhibitors can be less effective over time and we may see the same result with beta-blockers as long-term followup info becomes available. Please note that none the less, ACE inhibitors are still considered very effective for us long-term. I think this will also be true with beta-blockers. I discovered how hard my Coreg was working when I went off it, rise in blood pressure or not! <g>
     I fully agree that each person is different and any therapy may fail for any given person - sometimes immediately and sometimes many years down the road. Side effects can also crop up after many years free of them on any given drug. I have had that experience myself.
     However, we must be extremely cautious about what we hear from medical personnel, health industry employees, the media, and what is in "newsletters" even from prestigious institutions. John Hopkins' online newsletters have contained errors and Reuters Health makes their share of mistakes, so be careful about what you "hear." I often take my own CHF doctor's statements with a grain of salt. I push him to be as specific as possible about why he thinks what he thinks.
     Kate, please understand that many readers are wondering if their Coreg is suddenly going to stop working tomorrow. That's why I am going to such length in this reply. Maybe the answers to some questions will help me gauge the possibilities.
     It seems to me that your heart failure worsened and you believe your beta-blocker losing its effect caused this worsening. Could your ACE inhibitor be less effective? When this happens, adding an ARB can help calm the RAS down. Have you had an ARB added to your ACE inhibitor? Have you had your norepinephrine or other catecholamine levels checked? Is your blood work stable? Are you anemic? Have your life style, exercise, physical activity level, or environmental stresses changed? Do you take NSAIDs? How is your oxygen uptake (Vo2max)? My point is that I am not sure why you singled out your beta-blocker as the cause of your worsening heart failure. I expect you have considered all these things, but I want to cover all the bases. ;-)
     Coreg is non-selective while Toprol-XL is selective for beta-1 receptors. That's why I can't figure how switching from Coreg to Toprol-XL would help if your beta-receptors' are no longer effectively "blocked" by the drug. You say switching beta-blockers helps for awhile. Does your doctor say why? It's got me stumped on first glance - I haven't done a search yet. It would seem that Toprol-XL wouldn't help if Coreg had already caused "tolerance" in your beta-1 receptor response.
     You didn't respond to pacemaker therapy. Is it a CRT pacer? If so, what was your QRS interval before pacing? If your pacer is not a CRT device, what heart rhythm disturbance caused you to okay the implant?
     With your previous experience bouncing back and forth between 3 beta-blockers, maybe you should be genetically tested to see if beta-blockers will help you much, or if Coreg is the right beta-blocker for you. See I think I have info on gene testing and Coreg specifically but don't have it in hand at this moment.
     As I posted earlier, there is definitely a long-term trend toward higher blood pressure in CHFers on Coreg, but it doesn't so far seem to show the drug, or any other beta-blocker, becoming truly ineffective in these same patients. It may be due to reduced alpha-blocking rather than reduced beta-blocking as far as I know. I do know from stopping Coreg once that the drug is doing a great deal indeed despite my higher blood pressure on it! <g> I do hope (nothing personal, Kate!) that Kate is an exception rather than the rule if Coreg is failing her.
     Finally, I would like to say that some CHFers will get worse, period. This is not necessarily because any given therapy "failed" but because their heart got weaker and weaker despite the therapies used. This is just an ugly possibility in heart failure and may always be so. Any given therapy can only do so much. In the face of a failing heart, sometimes it just isn't enough.
     PS. My comments on the doctors' comments stand. I think my previous post accurately describes what they meant, which was all I addressed. I did not address Kate's condition at all in that post. Jon.

Jacky's February 14 reply to Andy's February 13, 2004 - Hi, Last year I was in Yellowstone and had no problem at approximately 10,000 feet. At Christmas, I was at the Grand Canyon at approximately 7,000 feet and again had no problem. However, I was in Canada last week at 3,500 feet and a temperature of 28 degrees and this bothered me when I walked up slopes. I think it was the temperature and slope that were the problems. So who knows?

Cat, February 14, 2004 - Hi, This question is for those of you are also dealing with lung disease in addition to cardiac problems. Beta adrenergic agonists like albuterol and serevent can cause exacerbations in patients with arrhythmias. In spite of my scheduled ablation next week, my pulmonologist discussed taking me off the latter altogether. Wouldn't that exchange one problem for another? What do patients with similar problems do? Any input would be appreciated, Cat.

Doug K's February 14 reply to Andy P's February 13, 2004 - Well Andy, I am only one person but I moved my daughter from Detroit (where I think we are about 800 feet above sea level) to Denver last August and I was fine in the Mile-high city. She had been to the top of Pike's Peak before, having a boyfriend drive the car. That's 14,110 feet, I believe. She wanted me to see it.
     I talked to my cardiologist before I left about altitude, and he recommended that I not go over 9,000 feet. I went as high as Glen Cove, which is 11,000+ feet and that was as far as I felt safe by any definition. I was feeling oxygen deprived somewhat, just sitting in the car by that point and probably shouldn't have gone that high, since I started to get a headache as well. I noticed the oxygen shortage around the 8,000 to 9,000 feet mark. The beginning of the road up is around 6,500 feet to start with!
     My daughter is 26 and healthy, and she was short of breath from walking. Since the roughly 6-lane road all the way up to Glen Cove drops to 2 lanes after that, there was no way I was going up there, and my daughter didn't think she could drive and literally look out the window and see nothing but air!
     So I would really think hard about hiking that high up, and see what your doc says. Oh yeah, by the way, it was beautiful and worth seeing even if I didn't get to the top of the Peak. ;-) But I will never go that high again, it is too risky. I had the CHF hangover for weeks afterward too, I might add. I hope this helps you out, sorry to have to recommend that you not hike at that height, I am sure you would like it.

Patricia, February 14, 2004 - Hi all, Concerning CHF and working, I was diagnosed in 2001 with CHF, cardiomyopathy, and leaking valves. Last year, I could hardly make it through a day at work without feeling so tired that I would come home at the end of the day (those when I was able to work) and only make it as far as the sofa. Some days I would just sit and cry, because I didn't think I could work another day.
     This year, I am working a full-time job and 3 part-time jobs. For the past 5 months, I have averaged about 55 to 60 hours per week. My job requires me to be on my feet most of the time and most days I make it through with only mild fatigue. I still have some bad days and went through several weeks of CHF symptoms, but thankfully I am "well compensated" at the moment. Other than doctor appointments, I haven't missed any work because of illness in more than 6 months. I still worry about getting sick and not being able to work, but try not to think about it. My angels are watching over me! Patricia.

David Wilson's February 14 reply to Jacky's February 13, 2004 - Hi, I have been on Coreg for over 3 years. I worked up to the max dose of 50mg twice a day. Now I am on 25mg twice a day. In my experience, the larger dose did not help me. Coreg does not help me as much as it used to. I had gastric bypass surgery in October and have lost 75 pounds so far. At first I felt fantastic, but over the last month I am getting worse again.
     My cardiologist who put me on Coreg told me it could help a lot, but the help might not last. I know I am better off taking Coreg, but I don't think it is doing me that much good anymore. On the other hand, without Coreg and my other meds, I would probably be very badly off or dead. My EF was 14% at diagnosis in 08-2000. It went up to 25%, then 40%, then back down to 25%. I think medicine can only do so much.
     I had gastric bypass so I could qualify for a heart transplant. I think that is my only long-term hope. My heart is not going to improve anymore and it probably will only get worse. I think Coreg is a good drug, but its effectiveness varies. Nevertheless, continue taking the Coreg! You are still probably better off with Coreg than without it.

Jon, February 14, 2004 - Hi everyone, I am getting pretty frustrated trying to find a chat room I like for the site. If you use chat rooms elsewhere and know of one you really like, please send me the url so I can find out what I think and what product is being used there. That's my next scheduled site purchase and I need to get it done so scheduled chats can get underway! Jon.

Jean Hudson's February 14 reply to Barbara H's February 13, 2004 - Hi Barbara, My husband, who is long time CHF and COPD patient, just had surgery on his knee. Coumadin caused him to need 8 pints of blood so he was put on heparin blood thinner while in the hospital. We were not told that Tylenol, which was in a pain pill, should have been stopped 2 weeks ahead. The doctor said these things happen with no cause for bleeding; had one Coumadin the night before surgery.
     He was on a low-calorie diet with greens and baby aspirin, which was stopped, yet it just happens? Blood loss caused his heart to V-tach for the first time. He is okay now on a small dose of Coumadin for 2 weeks. He had a gastrointestinal bleed. The bone surgeon said he was lucky to have had knee surgery as he found he had GI problems, which he would not have had if we had read Jon's Tylenol report, perhaps.

Deb's February 14 reply to Cat's February 14, 2004 - Hi, My daughter has some breathing issues from time to time. Her doctors told her under no circumstances was she to take albuterol. They gave her Xopenexx. It is supposed to have a lesser effect on heart rate and arrhythmia. She never complained of getting that racing heart feeling from it like she did when she used albuterol. Deb.

Kate's February 14 reply to Jon's February 14, 2004 - Hi Jon, I am not trying to be smart, but who do you trust for your medical decisions? It was the head of the heart transplant unit who switched me to Toprol-XL. My cardiologist was actually upset that he made the change. Yes, I have a CRT based on a QRS interval that met the criteria. My Vo2 test indicates I technically qualify for transplant but function at far too high a level to even consider it.
     Interestingly, after 6 months with my implant and no improvement, I decided about 4 weeks ago to increase my Toprol XL dose all on my own from 75mg to 100mg daily. My energy level is up dramatically and my blood pressure is down. My cardiologist will probably be less than amused when I tell him what I've done, but I sometimes just do what feels right.
     My body loves beta-blockers. I actually crave them when I go through withdrawal of the meds before switching so I know they are still effective on some level and when a change is made my EF goes up. I did not, however, go through this craving when I stopped taking Coreg, which is one reason I don't think it was contributing much.
     I have another little quirk that allows me to gauge when I have titrated to the correct dose. Chemo left me with central nervous system damage and some tremors. My tremors get much worse when I am undermedicated on a beta-blocker. They were terrible before stopping the Coreg. I noticed 2 months ago that my hands were shaking so badly they were keeping me up at night. Since increasing the Toprol-XL, the tremors have all but disappeared.
     No, I'm not anemic though my red blood cell count is always right on the low end of the scale. I don't use NSAIDs. Right now I have another battle that I am losing because of my liver. My C-peptide was flagged as high at 6.9 and my cholesterol levels are dreadful. I'm on my second attempt at tolerating a statin, but I can feel my liver complaining already. You'd think after dropping 6 sizes, I'd have an improvement in cholesterol but just the opposite. Sigh. My proBNP is high, but my CRP ULTRA was just lovely.
     So, basically I'm every doc's nightmare. I've managed to survive 10 years and I have no intention of checking out quite yet. In addition to the disease I've survived a misprogrammed pacemaker with a defective circuit board. If there is an anomaly to be found, I'll have it. It's a jungle out there and every single doc has his own opinion but sometimes I just do what I think is best. Your advice and suggestions are always welcome. Kate.

Jon's February 14 reply to Kate's February 14, 2004 - Hiya Kate, Transplant teams take non-compliance of any kind far more seriously than any other doctors, so please don't endanger your chance of a donor heart. With a Vo2max under 14% and a low EF, it's not surprising that meds have a hard time keeping you compensate.
     Me, I trust my CHF doc. He is very, very good or he wouldn't be my heart doc. That in no way means I won't question him at length about anything and everything. He is not infallible, so questioning him - or any doctor or other source of information - is wise. That's one reason I have roughly 2,000 links on my site to other sources of information, so CHFers can check whether my info is correct.
     I am big on using trial data, especially from full-text reports, to verify what I read and hear, and to spot trends and possibilities. I also question multiple CHF specialists about many issues to get an "average" - a feel for what is right in general. I also manage to get contacts in other medical fields like sports medicine/exercise physiology, so I can bone up on topics doctors rarely understand very well. It's a lot of work, but I have an overdeveloped sense of responsibility to my readers, I guess. ;-) 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 Jon C.

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