Kate's 10-1 reply to Valerie R's 9-30 Coleman's sodium content & more
Ann 10-1 dose raising questions
Joanne R's 10-1 reply to Valerie R's 9-30 Coleman's sodium content & more
Monica's 10-1 reply to Joseph P's 9-30 Medicare information
Maggie R's 10-1 reply to Joseph P's 9-30 Medicare web site
Michelle A 10-1 seek angioedema experiences
Jon's 10-1 reply to Michelle A's 10-1 intestinal angioedema
Paul D's 10-1 reply to Valerie R's 9-29 Coleman's sodium content & more
Dan R's 10-1 reply to Deb's 9-28 Natrecor experience
Kate 10-2 mustard
Kate's 10-2 reply to Ann's 10-1 chemo induced cardiomyopathy
Ann H's 10-2 reply to Jon's 10-1 slow pulse rate
Louise D 10-2 fast heart rate
Maria 10-2 will my EF go down again?
Jon's 10-2 reply to Maria's 10-2 EF and how we actually function
Steve H's 10-2 reply to Joseph P's 9-30 Medicare and reducing drug costs
Sharon 10-2 seek heart wrap info
Dan 10-2 I have 2 questions
Lane C's 10-2 reply to Valerie R's 9-29 low sodium mayonnaise & more
Janice 10-2 seek SSD process advice
Pam 10-2 I am new to all this
Jim Inman 10-2 my dad got a transplant!
Mike 10-2 why do I swell in only one leg?
Robert 10-3 seek Edecrin experiences and info
Noel 10-3 seek info on implantable inotrope pumps
Kate 10-3 seek info on TEE procedure
Jon's 10-3 reply to Kate's 10-3 TEE procedure
Jim L's 10-3 reply to Janice's 10-2 I suggest an SSD lawyer
Cat 10-3 seeking surgery experiences
Sharon W 10-3 it's tough finding info
Pam 10-4 what drugs slow the heart?
Louise D's 10-5 reply to Jon's 10-2 why ask? and more
Jon's 10-5 reply to Louise D's 10-5 I would ask
Lydia Moore 10-5 questions on advil & HRT
Mel G's 10-5 reply to Kate's 10-3 my TEE experience
Margaret D 10-5 exercise questions
Jon's 10-5 reply to Margaret D's 10-5 exercise can be tricky
Lee 10-5 had the implant - thanks!
Jean J 10-5 seek experiences starting Coreg
Jon 10-5 Hey Ginger!
Anita S 10-5 seek surgery experiences
Jane M 10-6 seek Mayo Clinic experiences & more
Margaret D's 10-6 reply to Jon's 10-5 exercise frustrations
Margaret D's 10-6 reply to Jean J's 10-5 look at all the factors
Jack D's 10-6 reply to Louise D's 10-5 some questions
David W's 10-6 reply to Anita S' 10-5 my surgery with CHF experience
Greta 10-6 vacation and TEE experiences
Linda 10-6 why leg cramping?
George S' 10-6 reply to Kate's 10-5 my TEE experience
Lise C 10-6 diet questions
Marsha H 10-7 seek experiences with pain
Dave T 10-7 seek biventricular (CRT) pacer experiences
Patricia 10-7 need to vent
Lydia 10-7 does anyone have panic/anxiety attacks?
Scott B's 10-7 reply to Linda's 10-6 potassium lack a likely culprit
Katie 10-7 thanks for the information
Myrtle C 10-7 is this depression or CHF or what?
Jon's 10-7 reply to Myrtle C's 10-7 one possibility
Sheryl C's 10-7 reply to Lydia Moore's 10-5 hormone therapy
Eileen 10-8 seek surgery advice, experiences
Jack D's 10-8 reply to Marsha H's 10-7 see a sports doctor
Hal 10-8 seek Arkansans
Pam 10-8 what did the doctor mean by this?
Jon's 10-8 reply to Pam's 10-8 being well-compensated
Jon's 10-8 reply to Eileen's 10-8 upcoming surgery suggestions
Joyce 10-8 does higher pressure mean Coreg isn't working?
Myrtle C's 10-8 reply to Jon's 10-7 thank you for suggestion
Caroline 10-9 seek suggestions
Pat 10-9 does anyone know what this test is?
Pat's 10-9 reply to Lydia Moore's 10-5 hormone therapy experience
Cat's 10-10 reply to Pat's 10-9 just curious
Luc 10-10 to Joanne E
Pam 10-10 seek opinions
Pam's 10-13 reply to Jon's 10-10 diuretics and doctors
Robert 10-13 seek ideas about this cough
Donna V 10-13 convenient tips and more
Valerie R 10-13 sodium content question & more
Samantha B 10-13 any ideas about this cough?
Louise D's 10-13 reply to Jack D's 10-6 further information
Jon's 10-13 reply to Louise D's 10-13 for what it's worth
Jon 10-13 just a note
Greta's 10-13 reply to Samantha's 10-13 dry cough experience
Ann's 10-13 reply to Samantha's 10-13 dry cough experience
Robert 10-13 CHF is killing me
Ruthie A's 10-14 reply to Pam's 10-13 CHF specialist is critical
Sheryl C's 10-14 reply to Caroline's 10-9 stress can sure make things worse
Lydia's 10-14 reply to Pam's 10-13 CHF specialist is critical
Wadine 10-15 seek experiences with diabetes drugs
Joseph P 10-15 ICD and arm strangeness - any ideas?
Joe S 10-15 meds changes and weight gain
Dan 10-15 my story - we have to be on the ball
Gregg 10-15 questions about Disability and working
Katherine H's 10-15 reply to Joseph P's 10-15 ask at implantable dot com too
Marly's 10-15 reply to Wadine's 10-15 my diabetes drug experience
Kate's October 1 reply to Valerie R's September 30, 2003 - Hi, See, I just knew someone would go snooping around the Net and blow the Coleman's treat! Actually, the only thing I use it for is making macaroni and cheese for company. Remember when you are making something like a baked bean casserole from scratch that you are most likely making something like 8 to 10 servings, so whatever you put in should be divided by total servings. If it's 200mg and the recipe serves 10, that is only 20mg per serving. email@example.com
Ann, October 1, 2003 - Hi, I was recently diagnosed with andriamycin-induced cardiomyopathy. Here's my question: Does an initial low blood pressure and pretty low pulse rate prevent my getting up to the target doses on ACE inhibitor and beta-blocker? The cardiologist, not a CHF specialist, seems to think the side effects will keep me from getting there. I'm two months into the initial ratcheting up and now take 5mg of an ACE inhibitor and 6.25mg of a beta-blocker twice a day. firstname.lastname@example.org
Jon's note: Pulse rate of less than 55 beats per minute may prevent target dose on beta-blocker
Joanne R's October 1 reply to Valerie R's September 30, 2003 - Hi Valerie, The Complete Book of Food Counts, 5th edition, copyright 2000, by Corinne T. Netzer, says on page 472, "Mustard powder, 1 tsp, Sod. mgs. less than 1" I looked on my box of Coleman's Original English Mustard and the ingredients consist of mustard flour or, in American English, mustard powder. It seems like this is a source of flavor we are free to enjoy.
Incidentally, there is a baked bean recipe on www.lowsodiumcooking.com that is pretty good. I confess that I did add some No Salt Added ketchup and some powdered Coleman's Mustard to the last batch I made - very good! Be well and God bless. Joanne. email@example.com
Monica's October 1 reply to Joseph P's September 30, 2003 - Hi Joseph, First off, www.ssa.gov will help you with Medicare questions. Medicare does not pay for meds. I have been on Medicare for 2 years now and I have no prescription meds through them. They have supplemental insurance you can get to help with meds costs but if you are not over 65 years of age forget it - that's what they told me. I am 36. They have just passed a plan for Medicare to help pay for meds starting in 2006 but that doesn't help us now and when it does go into effect, my meds are more then what they have proposed. God bless, Monica. firstname.lastname@example.org
Maggie R's October 1 reply to Joseph P's September 30, 2003 - Hi, This is the official government site for Medicare: www.medicare.gov/. email@example.com
Michelle A, October 1, 2003 - Hi everyone, Where can I find more info on angioedema? What are the symptoms? I easily retain fluid in my abdomen and even on days when I don't feel bloated or fluid-filled, I still have minor GI problems but gastro-intestinal tests are negative. Personal experience or info would be greatly appreciated! firstname.lastname@example.org
Jon's October 1 reply to Michelle A's October 1, 2003 - Hi, Don't forget to use the site search engine and also to search The Archives. There is one article on intestinal angioedema at www.chfpatients.com/ace.htm#visceral_angiodema. Medscape requires a free registration but has a good article at www.medscape.com/viewarticle/443226_print and another at www.medscape.com/viewarticle/446546_print. Diarrhea, stomach bloating, gas and abdominal pain can all occur with ACE inhibitor-induced intestinal angioedema. One nice thing about a very low-carb diet is that it has eliminated intestinal gas from my life. <g> I don't know why but my wife says the same. Jon.
Paul D's October 1 reply to Valerie R's September 29, 2003 - Hi Valerie, It is possible to find no-sodium and low-sodium mustards on the market. You have to shop around or maybe special order, or make your own! There is a recipe at www.lowsodiumcooking.com/free/SpicyBrownMustard.htm, although I've never tried it myself. I buy Westbrae Natural No Salt Added Stoneground Mustard from Hain, which has 0mg sodium. There is a line called East Shore that can be ordered from Healthy Heart Market. I don't understand why Coleman's brand has such a high sodium content - regular dry mustard has only a trace. email@example.com.
Dan R's October 1 reply to Deb's September 28, 2003 - Hi Deb, I was in a CHF clinic and getting Natrecor treatments. The thing I noticed first was that after a couple of treatments (Monday-Wednesday-Friday), I was walking up to the clinic in the hospital instead of calling for a wheelchair to take me up. It can be very helpful if you stick with it. Good luck to your daughter. firstname.lastname@example.org
Kate, October 2, 2003 - Hi, Where is Colonel Mustard when we need him? My Coleman Mustard container also lists ingredients as mustard powder only. I prefer to think it is sodium-free and will live the rest of my life on that premise. email@example.com
Kate's October 2 reply to Ann's October 1, 2003 - Dear Ann, I just wanted to say hi to a fellow adriamycin-induced cardiomyopathy patient. Life can be a real kick in the head, can't it? You beat one thing just to get sick again. I also ended up with hepatitis C from a tainted transfusion during chemo. I hope you have beaten all the cancer business and are successful in finding the right combo of meds for the CHF battle. Kate. firstname.lastname@example.org
Ann H's October 2 reply to Jon's October 1, 2003 - Hi, I so much appreciate the info on 55 pulse rate. My pulse rate fluctuates greatly, and the oncologist would not proceed with chemo during a treatment in August. He did not go for the pulse readings of 38 to 44. It sounds awful, doesn't it? Would you believe I feel quite good?! My pulse rates often go into the normal range but they also plunge. email@example.com
Louise D, October 2, 2003 - Hi, I've been reading some old posts and I saw two related to something I have. I just found out that it may be a problem, though. My blood pressure is low and I take an ACE inhibitor. However, my heart rate is usually in the 95 to 99 range. I didn't think this was a probably until I read these posts. I thought as long as it was under 100, my heart rate was fine. Is it? firstname.lastname@example.org
Jon's note: It could stand to be 10 beats per minute slower - do you take a beta-blocker?
Maria, October 2, 2003 - Hi, I need to know something. I had an ejection fraction of 50 in May of 2002, then I was rechecked again in September of 2002. My EF was down to 25, then the doctor ordered a cardiac cath that confirmed this. I was put on tons of meds. I had another echo in September of 2003 and now my EF is 55% and they now say I am fine.
Once your heart is damaged and weak, does it repair itself like your liver? The doctor said I was fine now. I had contracted my heart failure through a virus. Am I really better, or will my EF go down again? email@example.com
Jon's October 2 reply to Maria's October 2, 2003 - Hi Maria, This cannot be "officially" answered by clinical trial results because there is no financial incentives to do a trial about it. My EF has been up and down for the past 9 years between 13 and 60% so I have some personal perspective on it.
I have felt better at low EF than at "normal" EF. Go figure. There is a great deal more than EF involved in heart failure: endothelial function, gas transfer, skeletal muscle function, neurohormonal activity, blood pressure and bodily fluid regulatory systems, and more. Just because your heart's left ventricle pumps out a normal amount of blood does not mean you are cured for certain. Some people may in fact be cured at this point, while others are far from it, and others are somewhere in between.
Your EF can fall again, but that does not mean that it will. I am sorry to seem so uncertain, but I have seen it go both ways and there is no clinical data from which to draw general conclusions. Stay on your ACE inhibitor and beta-blocker, stick to your low-sodium diet and exercise plan, and do whatever you are capable of doing. I wish I could tell you just exactly what that was <g> but there is only one way to find out - try it and see. Jon.
Steve H's October 2 reply to Joseph P's September 30, 2003 - Hi Joseph, I am also on Medicare and my drugs cost a lot. I found a site that has a quick questionnaire that may help. Through it I found that I qualified for a card from GlaxoSmithKline and one from Together Rx. Using both cards when I refilled my medicine my bill dropped my costs from about $205.00 to $145.00. Coreg is one of the covered drugs and chances are that one or more of the other drugs you use are covered. They both cost nothing so that is a good deal. I hope this helps. Here is the link: http://benefitscheckup02.governmentguide.com/index.cfm. firstname.lastname@example.org
Sharon, October 2, 2003 - Hi, and once again Jon, thanks for being here. I hope you are stable. I got a newsletter from Cleveland Clinic and for the first time in years, I have real hope for Rx. Although I did fine on meds for years and my ICD is brand-spanking new, I am not transplant material in the future and am sinking. I had cancer 2 years ago so I'm not a priority candidate. However, a study is underway to test (on a much larger group), a heart sock. Do you have any info on it? I tried to find some more, but it hasn't hit the Internet yet.
Apparently, it is actually a sock of special mesh material that springs back when the heart beats, giving an extra power to the output. It is for people, exactly like me, who function with an enlarged heart, but whose EF is below 20 and who would not qualify for a heart transplant. The old study only involved 50 people but was extremly promising. They are in the process of doing 300 patients, I think, at the Clinic now and will have data by 5/2004. The success stories included better valve function too.
All 3 of my valves leak, but my mitral valve is really bad. I pray this is all it appears to be. If you have any more info (and have the time), would you share further info with me or direct me to it on the web? Many thanks. Sharon W. email@example.com
Jon's note: See the links in your post.
Dan, October 2, 2003 - Hello everyone, I just found this site yesterday and am quite impressed with the information provided. My cardiologist has treated me for 2 years and placed me on all the meds: Coreg 50mg, Accupril 40mg, Avapro 150mg, Zestril 40mg, Plavix 75mg, furosemide 20mg, Lanoxin 0.25mg, Niaspan 2000mg. He has now said that he has gone as far as he can go. He says that my options are a pacemaker or transplant and that I am doing too well for transplant. My EF is 10 to 14%.
Do I need to seek a second opinion? Will a pacemaker help? I have type 2 diabetes and thyroid problems to boot. Any advice will be appreciated. Best to all! firstname.lastname@example.org
Jon's note: Get the second opinion. You don't say how long ago you were diagnosed. It takes time to see improved EF. A pacemaker will help those who fit the selection criteria precisely! but not others.
Lane C's October 2 reply to Valerie R's September 29, 2003 - Hi, I read Paul D's comments about the stoneground mustard by Hain and it made me remember that there are tons of products made by Hain that are sodium-free. They have a web site with a store locator that will give names of area stores carrying their products. They're more expensive, but if you like mayonnaise or Miracle Whip, theirs is sodium free. In the Dallas area, Whole Foods and Kroger carry a good selection. The web site is at http://www.hainpurefoods.com/store_locator/index.html. email@example.com
Janice, October 2, 2003 - Hi, I have applied to SSA for Disability and was disapproved. I have CHF and have been told not to work. I am concerned about appealing this decision. What can I do to make my condition clearer? firstname.lastname@example.org
Pam, October 2, 2003 - Hi, I'm very new to all the issues you deal with here. I just had an echocardiogram today. If it turns out I don't have anything like CHF, I will certainly turn tail and respectfully leave. It would be nice to talk to others who have gone through something similar, though.
I was at the ER last week with high blood pressure (256/180). I have struggled with the blood pressure thing for several years. I have tried around 20 meds and they either don't work or they make me suicidal (beta-blockers), or I lose teeth (calcium channel blockers gave me gums so swollen I could not eat or sleep), or I experience dizziness and hearing loss (diruetics). In other words, when they get the meds high enough to control my blood pressure, the side effects become intolerable.
I was dropped from Medicaid and was unable to continue with Diovan, which worked pretty well for me without side effects. I went without any meds for awhile on account of, shall we say, poverty. I also have kidney disease, which is under control right now.
The echo technician was very nice. He was kind enough to strongly urge me to see a cardiologist in the event my internist did not follow up with a referral. He said he would like to see my heart beating more strongly, and he said a cardiologist would know which medications could help me with that. He correctly guessed that I am frequently short of breath. He noted my heart was beating 120 times a minute because it was not beating strongly so it had to beat more often.
I guess I will hear the results from my doctor on Monday. Warmly, Pam. email@example.com
Jim Inman, October 2, 2003 - Hi, Today's secret word is "Transplant!" We got the call at 2:00 AM that they had a probable donor. We made the 85 minute drive in about 50 minutes and were able to spend time with my dad. The surgery went very well and now we just waiting to get through recovery. For more information, e-mail me for an online way to track my dad's progress. Thanks to all of you for your continued support! firstname.lastname@example.org
Mike, October 2, 2003 - Hi, Can anyone tell me why my left leg swells larger than my right leg? It seems I am retaining fluid just in my left leg, and it is nearly twice as big as my right leg. Thanks, Mike. email@example.com
Jon's note: Check out http://meded.ucsd.edu/isp/1994/im-quiz/pededema.htm. Have you been checked for lymphedema?
Robert, October 3, 2003 - Hi, I want to know if anyone has ever tried Edecrin, the diuretic. It is the only one without sulfa, yet doctors are reluctant to use it. It is now available through Merck in a limited way. It seems to be my last hope for my pulmonary edema. Any assistance or info on this med would be greatly appreciated. Thank you and God bless. firstname.lastname@example.org
Noel, October 3, 2003 - Hi, Does anyone know anything about implantable pumps to replace a portable external IV pump injecting milrinone or other pulmonary hypertension medicine? Thanks in advance and may God bless each of you on this message board. email@example.com
Kate, October 3, 2003 - Hi, My cardiologist did an echo and now he wants to do a TEE (transesphogeal echo). I couldn't find your page on that. How is it different than a regular echo? Is it more accurate? Thanks, Katie. firstname.lastname@example.org
Jon's October 3 reply to Kate's October 3, 2003 - Hi Kate, I couldn't gather enough individual experiences to write such a page from the patient perspective because most people are pretty heavily sedated during the procedure. It is an echo where the transducer is literally swallowed to get "up close and personal" echo pictures. How much more accurate it is I don't know but due to the internal transducer, things can be more clearly seen that with a regular echocardiogram. Jon.
Jim L's October 3 reply to Janice's October 2, 2003 - Hi Janice, Try a lawyer who specializes in Social Security issues. Many people who have been rejected do finally get disability when properly represented. These lawyers cannot charge you if they are not successful. Of course, before they accept you they will be pretty sure that they will succeed - the best way to go. Good luck. email@example.com
Cat, October 3, 2003 - Hi, A tumor of the parathyroid was recently found to be the cause of my hypercalcemia, and I was wondering if anyone has ever had or is familiar with the procedure known as minimally invasive surgery. If so, any input would be appreciated. Thanks, Cat. firstname.lastname@example.org
Sharon W, October 3, 2003 - Hi Jon, Thank you for the info on the heart wrap. I tried to send you the two pages on the heart cap (I said sock - now that's bad dyslexia). I do not know how to forward the info to you and it is nowhere on the Net, including the Cleveland Heart Clinic site. Suffice it to say, there is more research being done on reshaping, supporting and making the heart more efficient. We all just have to hang in there long enough for studies to decide it's value. email@example.com
Jon's note: You can scan them or type them and e-mail them, I guess or you can photocopy them and send them to the same address donations are sent.
Pam, October 4, 2003 - Hi Group, I have had a few "welcome to the group" messages in my personal e-mail, so thank you to those who have welcomed me here! It's nice to hear from people who are knowledgeable about this condition. I have a question from what the technician told me. Can anyone tell me which meds are able to correct the heart's rhythm? I'm curious.
I know the doctors have listed beta-blockers as a class of drugs I am allergic to. I also know they will slow the heart. When I take a beta-blocker, I become suicidal (start making plans to kill myself) within 2 hours of taking the medication. This is not normally how I think, thankfully, or I would not still be here!
So I wonder which sort of drugs slow the heart. It would be nice to know there are some out there I may be able to tolerate. I look forward to hearing from you! Pam. firstname.lastname@example.org
Louise D's October 5 reply to Jon's October 2, 2003 - Hi Jon, Thanks for the answer to my question. No, I don't take a beta-blocker. I'm not sure if you recall from my first post around September 18th that I had just started taking metoprolol when I noticed a really bad lower backache the day after my first dose. I stopped taking it. Since then, however, I've had two similar backaches, though not as intense as the first following the dose of Metoprolol. I think all of these backaches are related to a kidney problem caused by diabetes. Everything I take seems to cause my blood sugar to rise, including this beta blocker.
Yes, you are right that I should have a kidney function test. However, the only way I can do this is if a doctor orders it. Unfortunately, I've had some unbelievably bad experiences with doctors the past 5 years. This includes their not diagnosing my CHF until December of 2002 when I was class 3, and their saying I did not have high blood pressure until I was diagnosed with CHF. They also deny I have diabetes and rheumatoid arthritis even though I have all the symptoms of both. They refuse to treat properly the conditions they say I have - anngina, high blood pressure, and CHF. They also refuse to order tests I need. This includes cancelling a chest x-ray in the ER in December of 2002. This is a partial history of my treatment by doctors. So can you really blame me for not having faith that one of them would order a kidney function test? email@example.com
Jon's October 5 reply to Louise D's October 5, 2003 - Hi Louise, As you can guess from my bio, I have had some serious problems with doctor's attitudes (someday I'll put up one experience that will stun you) but I work hard at working with my doctors. Sometimes, our problems in part stem from forgetting that doctors are people too; that they make mistakes and often need to be approached in a sensitive way to ensure their cooperation.
I am not "blaming" you for what may well be "their" mistakes. However, the way we approach people - including doctors - can heavily influence whether or not we get the result we desire. People are people are people, regardless of career choice. ;-)
I would ask for a kidney function test - the only person being hurt by not asking is you. Jon.
Lydia Moore, October 5, 2003 - Hi everyone, I would like to thank those of you who replied to my post. It was so appreciated. I have a woman question. It's okay guys, we're all in this together. I have been on hormone replacement therapy for quite awhile and was wondering about some imput on this topic because of heart disease. I am debating if I should go off or stay on them. I get different opinions from different doctors and am really confused. Maybe someone here has had to deal with this as well.
Another question I have is if advil is okay to take. I am getting arthritis pain from previous knee surgery and the pain is keeping me awake at night. If anyone knows any answer for me, I would be so grateful. I love you all so much, God bless, Lydia. Flanders66288@cs.com
Jon's note: I would talk to my doctor about an alternative to Advil, since NSAIDS cause us to retain fluid.
Mel G's October 5 reply to Kate's October 3, 2003 - Hi Kate, My first cardiologist did a TEE on me last year. He wasn't a very likeable guy, and was fairly brusque and unsympathetic about the whole thing. He wouldn't tell me why he was doing it, except to say that he hoped to find more clues as to what was happening with my heart.
Because the rib cage is in the way, he could get a better look at the back of my heart by looking in from that point. The esophagus is behind the heart and those echo images can give a very clear picture of the anatomy and structures that might have been unclear in a regular echo because of the ultrasound waves bouncing off the rib cage and the heart itself from the chest (front) view.
There are lots of things that can be assessed by echo and I think some aspects (like detection of a thrombus, or back wall motion index) are more clarified or ruled out by TEE than regular echo.
My experience wasn't too bad. Be prepared for a half-day off, hospital gown (can't remember if there was an IV but I don't think so), lots of waiting, and an "Operating Room" type procedure room, which is more sterile than a regular echo room or even a MUGA type room.
There was a really nice nurse and a helpful student-doc as well. The cardiologist explained that he had to put the transducer (the viewing instrument) down my throat and that gagging (yech) was normal, and to just get past that. He would spray my throat with a local anesthetic to numb it, and as it really wasn't going to hurt or take very long, I should relax as much as possible.
I don't think I received any sedation at all (I'd go for it if they offer it to you, but it might restrict you from driving home). Anyway, he did spray the solution towards the back of my throat (tastes terrible, but works) and then stuck the transducer down (not too fun, but not awful either), and looked and clicked away. I was far more concerned with what he might find there than the procedure itself.
In the end he popped in to see me when I was in the next room preparing to get dressed and leave. He simply said, "Well, I've looked at the images. Bad, bad" and he walked away. The guy was a real idiot when dealing with people. I haven't ever found out what he meant by that. I changed cardiologists a long time ago and on reflection, I think my experience with the TEE was slightly negative, mainly because of my dislike of the doctor's manner.
Should my new cardiologist think there was a need for a TEE one day, I don't think I'd object at all. I hope you have a positive experience with it, and hope the results are better than you could possibly wish for. :-) Good luck. firstname.lastname@example.org
Margaret D, October 5, 2003 - Hi, I have some questions about exercising. My baseline heart rate is about 56 beats per minute. I can only go up to about 84 without feeling either short of breath or lightheaded. Of course I am on Coreg, which prevents heart rate from going up much because it is a beta-blocker. Is this too high or too low for any benefit?
Also, does anyone know anything about MET level? A trainer told me to aim for 3.8 to 4.3 and I can only do 2.8 on the treadmill. Is this terrible or just Okay? I have had to slow down the treadmill from 2.9 miles per hour to 2.4 in the last couple of months. I'm just trying to figure out if I am declining or just had been pushing it too much. I'm due for my next echo next week. email@example.com
Jon's October 5 reply to Margaret D's October 5, 2003 - Hi Margaret, I hear a lot of people worried about not being able to raise heart rate "enough" to get "benefit" from aerobic exercise. This is because extremely few doctors know squat about exercise. Heart rate can, in my personal opinion, be pretty much ignored in a CHFer's daily at-home exercise routine. It just doesn't have a strong enough relationship to results (results meaning how much exercise improves your ability to function on a daily basis).
On a beta-blocker you just can't raise your heart rate as much and that is that. Emergency Medical Magazine stated that: "Beta-blockers can prevent patients from reaching their target heart rate and thereby render test results inconclusive." Go for a longer time rather than a faster speed and thus work on your endurance. If possible, add some resistance (weight) training for increasing your ability to do daily tasks without so much effort.
In CHFers, METs (these are just multiples of your resting metabolic rate) are less accurate and less predictive than Vo2max in ml/kg/minute. One way to view METS is:
Skeletal muscle function and gas transfer (how effectively your lungs and circulatory system use the oxygen you breathe in) are skewed by heart failure; so don't get worked up trying to use standards developed for healthy people! We are apples and healthy people are oranges and you can't accurately compare one to the other.
You will find a lot of studies that seem to contradict what I say but delving into the details brings certain things to light: Most studies are done on people with CAD - not an exclusively CHF patient group; they do not compare MET levels to Vo2max scores; they over reach by trying to make some kind of formula figuring in meds use, age, etc,... to calculate mortality risk from exercise; and on and on and on. A fairly decent study of some of these factors can be seen at www.postgradmed.com/issues/1999/05_01_99/driggers.htm. It is stated there: "The ideal patient for maximal exercise stress testing has several known cardiac risk factors, has a normal baseline electrocardiogram (ECG), is not taking digoxin or beta-blockers, and is either asymptomatic or has atypical chest pain."
Your neurohormonal levels are artificially regulated by meds for a very good reason, and to try to "break through" that control just for exercise sessions is pretty much futile. Work within your boundaries - as long as you are "working at it" exercise will benefit you. It's not the heart failure that usually limits heart rate but the meds we take and that's a good thing.
In my personal opinion - again - daily activity level is more important than regulated exercise. However, you can't accurately track either progress or decline without using standard exercise over time, so an exercise "routine" is very important. The regular exercise routine is often what enables us to increase our daily activity levels over time.
I give priority to resistance training over aerobic exercise because I make a point to be as physically active as possible every day anyway. Someone who sits still a lot might want to focus on aerobic activity rather than weights. Be sure to read my page on exercise at www.chfpatients.com/faq/exercise.htm.
I hope this didn't just confuse the issues. Exercise for CHFers is one area that is widely misunderstood by doctors who understand heart failure and by doctors who understand exercise - it's the combination that throws them. Unfortunately, most don't realize they don't have it quite right. <g> Jon.
Lee, October 5, 2003 - Hi, Implant successful! Thanks to everyone who sent me their personal experiences on having a biventricular pacemaker/ICD implant. I had the procedure September 8th and came home September 11th. Everything went well except for an infection caused by an IV. My EF was 7% and I was barely getting around. I feel twice as strong now and have not felt a single fib since the implant. It was good of so many of you to write your experiences, which greatly reduced my apprehension. You're the greatest, Lee. firstname.lastname@example.org
Jean J, October 5, 2003 - Hi, I need to know if anyone on Coreg has had a problem with fluid in their lungs when they began it. My husband has started it and is having a lot of trouble not being able to sleep because the fluid in his lungs makes breathing difficult. Jean in Fallbrook, California. email@example.com
Jon, October 5, 2003 - Hey Ginger! I answered your e-mail but just this minute discovered that your ISP refused my message so you never got it. Please send me your phone number if you still need to talk and I'll give you a call. Jon.
Anita S, October 5, 2003 - Hello, I am asking for some advice from you experts on the forum. My husband has a tumor in his kidney that the doctor wants to take out. It has been there for a few years but is now growing. He also has polycystic disease but they think this could be cancer. They can't tell until they remove the tumor.
Phil has CHF and is mostly in class 3, but sometimes is in class 2. We were wondering how safe it is to have surgery with his heart the way it is. He was told by a heart doctor a few years back that going under anesthetic could be dangerous for him. Also, do you know if he will be on a heart-lung machine during surgery? I thought that I saw on one of the kidney sites that he would be but I can't find it again.
Of course, I am going to ask his cardiologist and nephrologist what they think. Since he goes to the VA, it will take awhile to talk to them. Maybe some of you who have had surgery or know something about partial nephrectomy can help. Thanks. firstname.lastname@example.org
Jane M, October 6, 2003 - Hi, I'm writing to vent a little and to tell those of you who are frustrated with doctors that there are other ways to go. I have adriamycin-induced cardiomyopathy with CHF along with a host of other illnesses and ailments. I have been disapproved for SSD and am awaiting a hearing date.
I went to view my file that they have on me, and boy did I get a rude awakening - my internist's office only sent lab test results, and test results from my immune deficiency disorder workup. There were some notes from phone calls that I had made which made it look like I was asking my doctor to write a letter to my school district (I was a teacher) to explain that I would be permantly disabled. None of his notes from my numerous office visits were included. My cardiologist had also made an offhand note that "I don't think she is physically unable to do sedentary work, but the stresses and work as a teacher are beyond her."
Needless to say, I'm upset. I had a 48-hour Holter monitor done last month and when my internist called to tell me that there was no evidence in that time period to show any a-fib, I did have lots of premature beats, both ventricular and atrial. We discussed my going to a specialist who has dealt with adriamycin-induced cardiomyopathy, but he felt that CM was CM no matter how it happened. He did suggest that I could go to Mayo Clinic because I could see many different doctors to help with all my illnesses. I called him on Friday morning (last week), and by Friday afternoon I had an appointment. I see a doctor in cardiology on the 14th, and she will send me to different departments as she sees a need.
I tried to take Coreg a couple of years ago, but it really affected my asthma. I have significant arthritis, and I can't take meds for that because of the CHF. The only thing I can take for that is Ultram and occasionally Vicodin if I'm too bad. If any one out there has had experiences with Mayo, I'd like to hear from you! email@example.com
Margaret D's October 6 reply to Jon's October 5, 2003 - Hi Jon, Thank you so much for your long and thoughtful post! I just reviewed your pages on exercise, hmmmm, it does get complex doesn't it? But of course I want black and white answers now! Anyway, I went to the gym for aerobic exercise and weight training for a year and a half before diagnosis. I was at the gym just one week before I entered the hospital and found out about my IDCM and 15% EF. I've been back at it for about a year and do both aerobic and weight training still. I prefer machines versus free weights. I recently did add another aerobic deal, a recumbent stepper, on the advice of a cardiac rehab nurse.
I'm just frustrated because I seem to be losing ground anyway. It is very hard not to compare to my pre-CHF routines, of which I am way, way off. Unfortunately there is no Vo2 max testing here as yet, but my pulmonologist's office plans to add it very shortly. I will be one of the first signed up I'm sure, according to him. I am now curiously and anxiously awaiting my echo results on Wednesday. Thanks again Jon, for all you do. firstname.lastname@example.org
Margaret D's October 6 reply to Jean J's October 5, 2003 - Hi Jean, The first place I would look is your husband's sodium intake. It is critical to follow a strict low-sodium diet of 1500 to 2000mg maximum per day. Is he also watching his fluid intake? Is he weighing himself every day? What other meds is he on and is he taking them correctly? I wouldn't blame the Coreg just yet. Have him call his doctor in the AM. He may just need some of his other meds adjusted. Please don't wait! email@example.com
Jack D's October 6 reply to Louise D's October 5, 2003 - Hi Louise, What are your blood sugar readings, like two complete days of readings? I have diabetes and I know how easy it is to diagnose. I also know that the so-called symptoms are completely unreliable. Also, what kind of equipment do you use to check your blood sugar - brand name and type? Since you have not been diagnosed, who taught you how to use the equipment? There are classes that you must attend. Can you explain how any doctor, all of whom take your blood pressure at every visit, could not see high blood pressure when the results are written on the page in front of him?
How can you say you are not taking a beta-blocker when metoprolol is a beta-blocker? Who gave you the diagnosis of rheumatoid arthritis? How many medical texts do you own? What do you believe to be the proper treatment for high blood pressure, angina, and CHF?
Why do they refuse to order tests? Why were you in the ER? Why would an ER doctor order a chest x-ray and then cancel it? I have had bad experiences with doctors but of the dozens of doctors I have seen, none of them has refused to order tests. I simply request the tests.
One dose of metoprolol will not cause you kidney problems. What is it you are omitting from your posts that might be of some assistance to us as well as to you? firstname.lastname@example.org
David W's October 6 reply to Anita S' October 5, 2003 - Hi, I just had gastric bypass surgery October 1st and I did quite well. The surgeons knew of my heart problems. I have an ejection fraction of 25% and my cardiologist did not want me to have surgery. My heart did fine during surgery and even after surgery. I was quite pleased.
The only problem I have had is my blood pressure drops too low. I have cut my Coreg down to 25mg instead of 50. I quit taking lisinopril because I took it Saturday and my blood pressure dropped as low as 70/39 and I passed out. I was only taking 10 mg of lisinopril, but now I am afraid to take it. I knew I would have to adjust my meds, but I did not think it would be so soon. I have already lost 10 pounds in less than a week. email@example.com
Greta, October 6, 2003 - Hi gang, I haven't posted in awhile. I have been doing a lot of reading though. Well, we did it. My husband and I just returned Saturday (10/6) from an 8-day vacation, on our motorcycle! We live in Arkansas and headed east through Tennessee to Gatlinburg, then Cherokee, North Carolina, then up the Blue Ridge Parkway and back home through Kentucky. Everything went real well.
Since I could not monitor my sodium intake as well, I took a little extra Lasix (with my doctor's okay) to compensate. We had a bunch of fun, but did not expect the weather to turn as cold as it did. Two mornings it was in the mid 30s F. It'a a good thing we pull a little trailer behind us to carry all the right types of clothing. This trip was a special occasion for me, since I never expected to be able to do this again.
As far as I know, my EF is still somewhere in the low to mid 30s. I see my cardiologist again in about 4 months. Since I was able to take this vacation with no problems, I must be better compensated than a lot of you. I just hope it stays that way. I wish all of you were able to do what I just did.
I also want to jump in here and offer my experience with having a TEE. I was fortunate - my team of cardiologists were friendly, patient and compassionate. The doctor who did my TEE was just about the best I could have asked for. He explained everything in great detail and said I would remember nothing of the procedure. I was doped up just enough to be sort of out of it, but still cooperate with his instructions. When I awoke, I was sure nothing had happened yet. Boy, was I surprised when the doctor told me it was over.
Yes, the spray to deaden your throat tastes awful but beyond that, after they started the IV I remember nothing. It was the TEE that allowed my doctor to make the diagnosis of myocarditis as the cause of my CHF. I have aortic stenosis as a result of a defective heart valve. The doctor thought that might be the problem, but wanted to be sure so the TEE was done. An echo only shows the front of your heart while a TEE allows for a view of the back of your heart. I'm sure its more complicated than that, but that is basically the explanation I was given.
Jon, how are things going with you and your wife and family? Blessings, Greta. firstname.lastname@example.org
Jon's note: Hanging in there
Linda, October 6, 2003 - Hi, Does anyone have trouble with leg cramps? This is what sent me to the emergency room in the first place and I ended up hospitalized with CHF, although I had thought my heart was just fine. They never did figure out why my leg was cramping. I am taking the standard beta-blocker, ACE inhibitor, and Lasix since June. The cramping stopped, but just started up again in the last couple of days. email@example.com
Jon's note: Has your potassium level been tested? (electrolytes) See www.chfpatients.com/tests/routine_tests.htm
George S' October 6 reply to Kate's October 5, 2003 - Hi Kate, I just had a TEE on Thursday of last week. According to the doc specialist who conducted the test (at St. Thomas in Nashville) an echocardiogram is accurate to 80%, while the TEE is accurate to 95%.
Their current protocol is to give anesthesia via IV, as well as the throat spray. I was out before they shoved it down my throat and wasn't conscious again until it was out. I felt absolutely nothing.
The after effects are minimal. They hold you 1-1/2 hours after the procedure to ensure that you can swallow again without choking. You have to fast 8 hours before and must have someone there to drive you home. I literally felt 100% by the time I left the hospital and have had no problems in the next several days.
Feel free to e-mail me directly if you have more questions about the TEE. George. firstname.lastname@example.org
Lise C, October 6, 2003 - Hi, I'm new to this message board. Thanks Jon, for your reply regarding my craving for sugar. Ever sense I had the ICD put in last November, the weight has been creeping on! Not only do I have CHF, but I also have a dilated aorta and a leaking aortic valve, therefore too much weight is not a good thing. Does anyone know if I go on a low-carb diet, around how long it will take before the sugar craving goes away? email@example.com
Jon's note: It tool about 8 weeks for me.
Marsha H, October 7, 2003 - Hi, I have a history of DHF and mild to moderate MVP but had I been symptom-free heart-wise for quite a while - as long as I am careful about sodium intake. I developed chest pain recently and went back to the cardiologist, who diagnosed the new symptoms as being "mitral valve pain."
He said that he believes it has been caused by the many months of moderate to severe pain I have had with a rotator cuff tear. It took a long time for the bone doc to diagnose and now 4 months after surgery, I still have to sleep sitting up because lying down causes more pain than Ecotrin can relieve. I'm allergic to nearly every pain killer there is, including anaphylaxis to morphine, so my options are limited.
The cardiologist gave me 4 months to "get the shoulder fixed or he would be in my face" so I have a second opinion appointment this week with another bone doc. I have not seen any posts describing degradation in cardiac status as a result of pain from unrelated problems like this, and I am wondering about its prevalance and how others have managed in similar situations. Any insight would be very much appreciated. Jon, thanks again! firstname.lastname@example.org
Dave T, October 7, 2003 - Hi, My doctor wants to replace my one year old ICD/pacemaker with a biventricular model. He says it may reduce my CHF symtoms. Has anyone had any good/bad experience with these? email@example.com
Patricia, October 7, 2003 - Hi all, I read here daily, but don't write often. I really need to vent today. I am waking up at night and feel like I'm drowning. I have a very hard time catching my breath. I have CHF and GERD, so I'm not sure which is causing the problem. I called my cardiologist today only to find out that she moved to another state about 3 months ago. I would have thought that I would have been notified. I can't believe I have to start the search for a cardiologist all over again now that I am finally doing better. Thanks all for listening. Patricia. firstname.lastname@example.org
Lydia, October 7, 2003 - Hi Everyone, I was wondering if anyone here has panic anxiety? I have had it for years and it has been really bad lately. I have been having a real problem with obsessing on my CHF. It has put me in a real fear mode and I can't seem to shake it. I was just wondering if anyone has had panic attacks and what they take for it. Jon, I hope all is going better for you and your family. God bless, Lydia. Flanders66288@cs.com
Scott B's October 7 reply to Linda's October 6, 2003 - Hi Linda, Jon is right on the money. I get some wicked leg and abdominal cramps (and sometimes eyelid pulsing) after a prolific course of diuretics. I take Slow-K because I found that eating bananas and drinking orange juice was not always enough to get my potassium levels back to where they should be. I also found potassium improved the mild chest discomfort I was experiencing. Good luck. Scott B. Kitchenerguy@rogers.com
Katie, October 7, 2003 - Hi to everyone who responded, Thanks for your up close and personal responses. I thought it was an office procedure, so thanks for the preparation! Is the doctor supposed to be there too? I hope if my cardiologist is there, he will tell me more than, "Bad, bad!"
Jon, this is a nice site, very professional, but I find the jumble of threads difficult, though educational, to navigate. My brain isn't as good as it was when I had full O2 going to it. Any thoughts about getting one of the newer, easier forum formats? email@example.com
Jon's note: Nope.
Myrtle C, October 7, 2003 - Hi, After a busy fun day last week, I felt fatigued for the next 3 days. My depression became worse and now I don't know if it is the depression or the CHF that is causing me to just want to sit and stare. I know this sounds like depression, yet when I do anything such as sweep the porch or clean the bathroom I feel worse. I can't walk due to leg and foot problems. I feel as I am sinking physically and emotionally in a deep abysess.
My cardiologist thinks my CHF is a class 2 at the most. I take Coreg 3.125mg twice a day and furosemide (Lasix) 20mg once a day and a potassium supplement 20mEq. I couldn't tolerate ACE inhibitors. firstname.lastname@example.org
Jon's October 7 reply to Myrtle C's October 7, 2003 - Hi Myrtle, I rarely suggest this because it is not as effective as the ACE inhibitor or beta-blocker route. However, on the strong possibility that Coreg is making your depression far worse than it would be otherwise, I would talk to my heart doc about stopping Coreg. Suggest hydralazine and nitrates instead. That was the drug combination used before the other drugs became available, and it is suggested for CHFers who cannot tolerate beta-blockers or ACE inhibitors - you may fall into that category. Jon.
Sheryl C's October 7 reply to Lydia Moore's October 7, 2003 - Hi Lydia, The HRT (hormone replacement therapy) question is a hard one. I get no definitive answers from my cardiologist or my gynecologist. After years of taking hormones, I have quit. Since we have existing heart problems, I view taking them as playing with fire. I have had 2 MIs and wonder if the HRT was partly to blame. I say play it safe and go off them but be sure to talk to your doctors about calcium replacement.
There are herbal replacements that may help with symptoms of menopause, but again, check with your doctors. If you are sexually active, discuss with your docter how going off the hormones may affect you. Good luck, try to look cute during hot flashes. Sheryl C. email@example.com
Jon's note: Real women don't get hot flashes - they get power surges!
Eileen, October 8, 2003 - Hi Jon, It has been a long time since I have written because things in this CHF house seem to be going along very well. My husband, who is the patient, is planning on having his rotator cuff and bicep tear repaired next month. He is very worried about the anesthesia for this surgery but the ortho said the operation would be too hard for him to do without it as he might move on the table. His cardiologist does not seem to be concerned but has lowered his dosage of Coreg to 25mg rather than 50 for the next month because he has a low pulse (48 to 50) and the ortho would be concerned not knowing that this was normal for this patient.
Any comments on getting through a surgery, worrying about a-fib, and taking your meds? He takes zestril, Aldactone, Coreg and does not usually need any Lasix. Thanks and be well. firstname.lastname@example.org
Jack D's October 8 reply to Marsha H's October 7, 2003 - Hi Marsha, Go see a sports doctor. The only way to get rid of that pain is with a special series of excercises to make the muscles work properly again. The way it was explained to me is that other muscles in your back and neck try to take over for the muscles that normally operate there because those muscles are too weak to do their job.
I used to sleep sitting up with my elbow propped on several pillows so the arm wouldn't move. Of course I would tip over in the night and wake up because somebody was stabbing my should with a red hot poker. Pain pills didn't work but the exercises cured it. email@example.com
Hal, October 8, 2003 - Hi Folks, I hope all is well and you had a good summer without serious mishap. I'm the poster who is constantly searching for somewhere to live independently on SSD. I am slowing dying of kidney failure brought on by heart failure, am a burden to my family and am living in an filthy, crowded and absurdly expensive suburb in the San Francisco Bay area. Of course this is the last place I would ever choose to live - sweet kharma.
I would like to correspond with all you lovely people from the state of Arkansas, just to talk about the weather and the scenery and the medical community, etc. The web page regarding Garland County and Hot Springs as a retirement solution looks real good to me. Freedom has always been important to me and right now I feel trapped.
Depending on others to get by doesn't work for me. I have to be free to make my own way and carry my own weight or I don't want to be. I believe I can do that in Arkansas and would like some feedback. Thanks so much. firstname.lastname@example.org
Pam, October 8, 2003 - Hi, I finally got the word from my doctor about the results of my echocardiogram. He is referring me to a cardiologist. He says he is surprised how well compensated I am, with an ejection fraction of 20%. I'm not sure exactly how to take that. Can anyone tell me what that might mean? Thanks. Warmly, Pam. email@example.com
Jon's October 8 reply to Pam's October 8, 2003 - Hi Pam, It probably just means that he expected someone with an EF of 20% to have more and worse daily symptoms. Your situation won't surprise a CHF specialist the way it does your general care doctor. Jon.
Jon's October 8 reply to Eileen's October 8, 2003 - Hi Eileen, The main concerns are infection and anesthesia. Make sure that both your husband and his cardiologist speak directly with the anesthesiologist in charge of his surgery. Make sure - don't take some staffer's word for it. Strongly suggest - in person and well ahead of time - that the anesthesiologist himself be present during the entire surgery rather than rotating in and out while a nurse anesthestist does the rest. Discuss extra precautions against infection with the surgeon ahead of time. Be certain you and your husband truly understand your husband's health situation before talking to these doctors, as they may want some specific numbers. Jon.
Joyce, October 8, 2003 - Hi, If blood pressure is running around 152/109 does that mean that Coreg may not be working like it should any more? I know we need to contact the doctor but was just wondering about this since Coreg is supposed to lower blood pressure and help keep a normal rhythm. firstname.lastname@example.org
Myrtle C's October 8 reply to Jon's October 7, 2003 - Hi, Thanks for the suggestion of using hydralazine and nitrates as a substitute for Coreg. I will talk to the doctor about this. Always, my appreciation and God bless us all. Myrtle. email@example.com
Caroline, October 9, 2003 - Hi, I have had CHF for 5 years now. I'm 32 and was born with a congenital birth defect off my main aorta that I had 3 major surgeries on before I was 6 years old. I have been working now for 7 months, and is seems like every time I try to work, I get sick. To add to this, my husband has been in Iraq since February.
When doctors try to make it a "stress" problem, I am quick to remind them that I have survived longer than the doctors gave me originally and that I am okay - I just wish I could function! They cannot get my blood pressure under control and they keep telling me that my digoxin level is low. I will be asking to transfer to Vanderbilt tomorrow when I go to the doctor's.
I was at the ER tonight due to the fact that I blacked out 2 days ago and I am still having a tremendous amount of chest tightness when I am active, even with minimal activity. Apparently my thyroid is slightly enlarged and borderline low also.
At age 32, this has been a battle but I know I haven't been through what half of you have. I was just hoping someone could give me some answers. Any help would be appreciated. Thank you and God bless, Caroline. firstname.lastname@example.org
Pat, October 9, 2003 - Hi, I still can't find the source of my knee problem. Gout and pseudo-gout have been ruled out. I saw an orthopedic doc yesterday. He sees some arthritis, and wear and tear on my left knee. He is sending me to rehab. He also had my PCP order some blood work to see if anything else involved. She wrote a script for dig level, BMP, lipid profile, ANA, sed rate, and something that looks like Hepf. Also, the number 414.0 is in upper right hand corner. I know from this site what all the tests are except Hepf?. I can't read it. Any ideas?
Also, the ortho doc gave me a shot in my knee which really helped. I am in cardiac rehab and it really is helping me. I have more energy and less depression. I had to miss a few sessions because of the swollen and painful knee. Thanks for your help. Pat. email@example.com
Pat's October 9 reply to Lydia Moore's October 5, 2003 - Hi, I was on HRT for 5 years when the bad reports came out. I weaned myself off Prempro over a 3 month period. After that I started feeling bad and gaining weight. Three months later I was diagnosed with IDCM and CHF. My cardiologist and PCP say there was no connection, but told me not to go back on the hormones.
I am worried about bone loss from not taking them and from the heart meds. I suddenly am having problems with my knee and my lower back. I was told by Jon and the docs not to take NSAIDs . I tried 8 hour Tylenol but got only some relief. I may be going to rehab for my knee. I hope that helps. I feel that since stopping the HRT, my body has gone downhill. Pat. firstname.lastname@example.org
Cat's October 10 reply to Pat's October 9, 2003 - Hi Pat and Lydia, I was just wondering why your doctors didn't prescribe fosamax and/or calcium and vitamin D supplements. Cat. email@example.com
Luc, October 10, 2003 - Hello Joanne E, I am very glad with the mail you sent me. I try to hang on the best that I can and it is very hard to go one and not get depressed with such heart disease. I am still alive yes, but some days I would be better off dead I think. It's just so very hard to live this way I am having chest pains most of the day and lots of fatigue. I also pass out - not much - but it's very scary.
My medications are still the same: Lodixal 204mg and Cozaar 50mg. They cannot give me more and they won't talk about a heart transplant yet. So what can I do? Nothing much, I guess.
I used to write at Jon's Place but nobody has written me back. Why, I don't know. As you know, I am Belgian and maybe that's why they did not write me back. My children are doing great. They are ages 11 and 8 now. I try to do all that I can to help them and to be a good dad for them.
It's very hard if some people don't understand my situation. Some of them have the nerve to say, "You look good." They cannot see how many problems I have just by looking at my face. I will end this small letter here. Thanks again for writing to me. Luc from Belgium. firstname.lastname@example.org
Pam, October 10, 2003 - Hi all, My internist has gotten over the initial shock of the results of my echocardiogram and has decided to put me on a few more drugs for heart failure before he sends me on my merry way to the cardiologist. So far, I'm only on Diovan.
Does Coreg act in any way like a beta-blocker? I'm a little leery of this one. I have had bad reactions to beta blockers, so I don't know what to think. He's also starting me on Aldactone (spironolactone) and Lasix. I don't anticipate any problems with Lasix, necessarily. I was on it before.
I do wonder if I should start out with a new drug a week or something, so I can figure out if they are causing side effects, and if so, which side effect belongs to which med. What do you guys think? Start all three at once, or stagger them out?I am looking forward to hearing your opinions, Pam. email@example.com
Jon's note: Only start Lasix if your symptoms require it. Coreg is a beta-blocker.
Pam's October 13 reply to Jon's October 10, 2003 - Hi Jon, I guess my internist thinks my symptoms require Lasix because even on 320mg Diovan daily, my blood pressure was still 190 to 170/120 to 115. I think my doctor is a little confused by me, because earlier he told me he thought my blood pressure should be low because of my low EF. I don't think he deals with many CHF patients.
He did agree to send me for a sleep test when I suggested it. He always agrees to get testing done, so I'm not complaining about that. He just seems to be on new territory with my case, I guess. So when I suggested the sleep test, he said, "Oh, sleep apnea! Have you ever been tested before?" I said, "No." He repliedm "That can cause pulmonary hypertension, which is what you have." I guess he talked to some other doctors in the interim and found out why my blood pressure could be high while my EF is low. Okay super, I'm going for the test. I'm sure glad I keep reading about these things.
I have decided not to try Coreg because when I went to the pharmacy to get it filled, they refused because of my past history with beta-blockers. Also, my internist has not taken enough history in my opinion, to determine how severe my CHF is. He tells me I don't have symptoms, even though I tell him that I do! He concentrates on the lack of edema in my legs and feet. He does not bother to ask any in-depth questions about my symptoms, even though I have mentioned them before. Coreg is contraindicated for severe CHF because it makes symptoms worse before they get better. I don't know what degree I have so I ain't taking it. Not to mention the suicidal feelings I get almost immediately on beta-blockers.
So I will wait to see the cardiologist to get his opinion about medication. I will take the spironalactone, and the Lasix, in the meanwhile. If he takes me off the Lasix, or tells me to take it as needed, fine with me. I only have an abdominal CAT scan and a sleep study to go. My appointment with the cardiologist is coming up on October 20. Pam. firstname.lastname@example.org
Jon's note: Yep, you desperately need to see a CHF specialist - take a list of questions so you don't forget to ask any.
Robert, October 13, 2003 - Hi, I have ARVD and some CHF. I've had a cough for some time that produces large amounts of heavy, ropey mucus that seems to travel up from my bronchi. My doctors have been useless in trying to figure this out or help me get rid of it. It sometimes cuts me off in mid-sentence (an occupational hazard as I am a pastor) and is quite distressing to me and those around me. Has anyone else experienced this and what have you done about it? Rob.email@example.com
Donna V, October 13, 2003 - Hi, I've only posted once before and I check the site daily; it has given me so much information and support, but this has to do with food. Originally I used the 8oz water bottles to freeze water, juice or whatever to help me keep up with limited intake. I still do that. I also did the ice tray thing for broth and such but would often forget to pop out the cubes and put the cubes in a bag. I was loosing freezer space. Now I've gone to using empty plastic spice jars for freezing broth and packaging my own spice blends and dressings when I am traveling (I don't travel so much yet) or eating out. I use a sharpie pen and computer labels.
Now it has occurred to me that all those empty prescription bottles we all have do have pretty good seals and the drug labels do come off and are really good for freezing or for carrying in a pocket. I have learned to cook again and am starting to like it. Six months ago I was supposed to die and I'd never heard of idiopathic cardiomyopathy. "What virus? I never get sick!" Now, with drugs, the diet and the exercise I know I'm better and I feel almost normal some days. Thank you so much for this site.
Somewhere in another town I found Consarios's "Tropical Grill" marinade/dressing at 10mg sodium per tablespoon and Drew's smoked tomato 10 minute marinade dressing/marinade at 60 mg. I ordered a case of each and use them both a lot. They appeal to my taste. firstname.lastname@example.org
Valerie R, October 13, 2003 - Hi Jon, I just made your BBQ Beef in the crockpot. It was wonderful. So far I've loved all your recipes - put up some more! My question is on sodium content. You have the no salt added ketchup at 120mg for 1-1/2 cups. I am sure you are right but my bottle says 0mg, and I am curious where you got the number. The second highest sodium in the recipe (meat is first) is the mustard! Two tablespoons are 720mg and my bottle agrees with that. I am still looking for sodium count for dry mustard to no avail.
Anyway, the dinner was wonderful! Val. email@example.com
Jon's note: Glad you liked it - it's on my own menu for later this week! I got the ketchup count off the ketchup bottle. My store then changed the brand they carried and the brand I use now has zero mg per tablespoon but I didn't go back through all the recipes - too much backtracking. ;-)
Samantha B, October 13, 2003 - Hi, I have been diagnosed with CHF since 1996. I am doing well on all the usual meds and my EF is 20 to 25% and has stayed constant through the years. I have developed a dry cough that I am concerned about. It's a tickle in my throat, which starts about 9:00 pm and generally occurs at night. I am not sure if it is just dryness in the air, my meds, or an early warning signal. It doesn't last all night, but it usually happens once. Any ideas? firstname.lastname@example.org
Louise D's October 13 reply to Jack D's October 6, 2003 - Hi Jack, I can't tell you about the meter readings because I rarely get them. The meter I have successfully registered only a few results, of which I'm skeptical. For example, it gave me a reading of 119 about 2 hours after I ate 3 pears. I did the test because after I got over the drowsiness, I started vomiting. I just called the manufacturer, Therasense, because I had stopped using the Freestyle meter and I can't tell if my headaches and dizziness when I eat are from blood pressure or blood sugar. Using a blood glucose meter is not difficult. I did call customer service and a woman walked me through my first test.
I didn't know why I kept having problems with frequent urination. On my first visit with a new doctor in July of 2002, she said I have a family history of diabetes, which I don't. Once I told a Social Security representative about this new diagnosis, the doctor then told me I did not have it. I started to doubt it, then a cardiovascular outreach worker convinced me again I have it. Later, a doctor at a diabetes health fair confirmed for me that I have it when he told me I have mild neuropathy after a foot exam.
I don't think the self-management classes are mandatory. Although I was offered classes at a clinic in April of 2003, it was because I told them I was worried about getting it since I have high blood pressure. I decided then I didn't need the classes since I could get all the information I thought I needed in writing.
The doctors and nurses did see my high blood pressure. They would just tell me it was normal or slightly elevated. The reading I was given the most was 140/90, borderline-high. How many people are given 300mg Avapro (irbesartan) for borderline-high blood pressure? I read the usual maintenance dose is 150mg. It caused all kinds of side effects, which the doctor didn't believe occurred. This same doctor took my blood pressure and told me she got a reading of 140/90. However, earlier, when the nurse took it, it was around 168/108.
Back in June 1998, the first time I knew I had high blood pressure at 170/110, I was told by my doctor that she did not want to put me on meds because of my age, 32 years. This year I was told by a doctor at a health fair that the doctor then should have tried life style changes first. If unsuccessful, she should have put me on meds, starting with a diuretic. Although I was a smoker and a coffee drinker, my doctor said nothing about this. On my next visit I was told my blood pressure was considerably lower, even though I don't how it got that way.
This doctor at the health fair also told me that angioplasty would solve the problem of my angina. I was diagnosed with angina by a doctor in February of 1999. I was told by a heart profiler from the American Heart Association, that with CHF, ideally, I should be taking an ACE Inhibitor, a diuretic, a beta-blocker and digoxin. I have 3 of the 4, even though I don't take them all. I have read that digoxin can be toxic so I'm afraid to try it on my own even though I can get it without a prescription. My heart profiler also asked if I'd spoken to my doctor about other options including a heart transplant. Of course, I haven't, since I don't have a doctor. Without this tool, I wouldn't even know how serious my CHF is. According to it, as of January 2003, I'm in Class 3b.
I went to a doctor in August of 2001 complaining of pain and stiffness in my legs and feet. She told me she thought it was rheumatoid arthritis. However, she did not order the blood test she said could tell for sure that I have it. Instead, after looking at my hand and moving my knee through my pants, she said I didn't have it. When I asked what could be causing these symptoms, she said she didn't know. She also made no attempts to try to find out. When I went to other doctors with the same symptoms, they too said they didn't know what it was. On the other hand, when I told my mother of the symptoms, she told me immediately she thought it was athritis. She has been suffering from this form of arthritis for years and didn't need to examine me to know I have it.
Symptoms in the medical books also confirm it. I have 5 of the symptoms that meet the diagnosing criteria for the Arthritis Foundation: symmetric swelling, soft tissue swelling in 3 joint areas, morning stiffness that lasts at least an hour, positive rheumatoid factor test and rheumatoid nodules.
I also have an extra-occular sign in iritis, inflammation of the iris. When diagnosed with this in August of 2002, I was told it was caused by inflammation elsewhere in my body. Although I offered arthritis as the source of the inflammation, the doctors denied I have it. Instead they said it was due to a condition called sarcoidosis. I didn't believe I had this and the books I referred to confirmed for me that I didn't have it.
However, this was a good reason for me to have shortness of breath instead of telling me then I had CHF. In February of 2003 after my SSD appeal to an administrative law judge, the doctors were then saying sarcoidosis wasn't causing my shortness of breath after all. In other words, there's still no official diagnosed source of inflammation elsewhere in my body. They still won't admit it's arthritis. I argued to the appeals council that this is what I have, using mostly written medical sources, since I can't rely on the treating sourcs. This is the easiest of my conditions to prove since I have nothing medically that shows I have CHF.
I go to the library 6 days a week. I have a good reason for spending so much time there - I'm homeless. Being there so much, I have a chance to read many books, including most of the medical references. I've consulted most of the ones in the 3 neighborhood libraries I visit. These include medical guides from Harvard Medical School, Cornell University, and the Mayo clinic. I also have access to the Internet, where I can use even more medical sources. One of my favorite sites is the Family Practice Notebook. It's for doctors so it is in medical speak but this just gives me a reason to use the medical dictionaries in the library. One of the good things about this site is that it gives the signs/symptoms for the condition so that the doctors can make a diagnosis. It gave me the diagnosing criteria for rheumatoid arthritis from the Arthritis Foundation.
Why do doctors refuse to order tests? That's what they get paid to do, I think, in my case. I didn't want to try to explain that my name is being used in a real estate scam. Believe it or not, it has been as far as I know since 1998. This is also the reasons I'm homeless.
I was told by the attending physician in the ER in December 2002 that I have CHF. However, when I left there they gave me nothing that said that. I don't know why the chest x-ray was cancelled. I was curious about it, so I asked. I was then immediately discharged. I think it would have showed something they didn't want to admit I have, an enlarged heart perhaps? I went to the ER because I was dizzy, extremely sleepy and I had swelling in my legs, ankles and feet. I was there about 10 hours. They just got rid of the swelling with IV Lasix. They also gave me a prescriptoin for hydrachorathiazide diuretic when I left. They told me to come back to the ER in about a week, so that we could discuss a treatment plan. Would you believe when I went back I wasn't even seen by a doctor even though I stayed in the ER waiting room 36 hours? It's true.
I only took one dose of metoprolol and stopped. I know it's a beta-blocker and didn't cause my kidney problem. I've had problems with my kidneys since at least March of 2001, when I was told I had blood in a urine sample. Like every other medical problem I've had the last 5 years, this went unacknowledged, undiagnosed, and untreated by doctors. The metoprolol just aggravated the condition because it raised my blood sugar. This is why I believe my kidney problem is related to diabetes. I also read that one of the risks of untreated high blood pressure is the development of other conditions such as heart failure and diabetes. I was told when I was diagnosed that my CHF was caused by high blood pressure. Since I have no family history of diabetes, I think high blood pressure has caused this too.
If a person can read, I don't think a medical degree is necessary to see what's in black and white. Some of the books and web sites aren't very technical. The ones that are just usually need some terms defined. This is not rocket science to me. email@example.com
Jack D's October 13 reply to Louise D's October 13, 2003 - Hi, Having tested one for use on my own site - the exact same one used on the AHA site - I suggest not using heart profiling tools online.
I also suggest caution in using medical texts for self-diagnosis. Such texts used without medical schooling can be very misleading even to the well educated layperson. I have read medical texts of some kind almost every day for the last 9 years and I never try self-diagnosis using such information. The potential pitfalls in such a course are tremendous.
I suggest a BNP blood test, which will accurately confirm a heart failure diagnosis in less than 15 minutes. You can then at least know about one more of your potential health problems. Jon.
Jon, October 13, 2003 - Hi everyone, I may not get posts done tomorrow although I'll try. I am taking my mother to a doctor and it could take quite awhile. Jon.
Greta's October 13 reply to Samantha B's October 13, 2003 - Hi Samantha, I was diagnosed with CHF in March of this year. My EF has gone up from roughly 20% to 30%. I am taking all the usual drugs - Lasix, Aldactone, Coumadin, Coreg, Altace - and am fairly well compensated.
As for the dry cough, I have had a problem with that from time to time. Mine seems to have 2 different causes. One of them is that my husband and I have 4 indoor cats and so I am taking Zyrtec and Claritin. The other cause is when I load up on too much sodium. I don't know if this info helps much. Your reason for coughing may be for a completely different reason, but I wanted to let you know I have it too, and why. Isn't CHF a kicker?! Blessings, Greta. firstname.lastname@example.org
Ann's October 13 reply to Samantha B's October 13, 2003 - Hi, This sure sounds like my ACE inhibitor dry cough. I hate it. Get a sugarless cough drop and keep by the bedside table. It helps, but just a itty bit. email@example.com
Robert, October 13, 2003 - Hi, I am very discouraged but ready to pass on. I have very bad blood pressure and pulmonary edema. I cannot take diuretics because of sulfa, so to breathe is such a struggle all the time. Doctors can't help and have quit on me. ACE inhibitors also make me throw up. My doctor said any days after Christmas are a gift. Be careful when picking your doctor. Mine was a cowboy and made many mistakes. God bless you all. firstname.lastname@example.org
Jon's note: Contact Merck about Edecrin, which is a sulfa-free diuretic.
Ruthie A's October 14 reply to Pam's October 13, 2003 - Hi Pam, I can't agree with Jon more. Get yourself to a CHF specialist without delay! No internist has the experience to handle CHF and regular cardiologist do not have the expertise either. A CHF specialist is well-versed in all the meds and treatment protocols necessary to help you feel as good as you can. A CHF specialist saved my life once, so I am partial, but only because I know I would have died if I had seen my internist or a regular cardiologist.
Jon's suggestion to take a list of questions with you to your appointments is also important. Make sure you have paper available to take notes of what your doctor says, too. That way you can make sure that every question has been asked and that you understand what the answers are. Remember, don't let the doctor get by with "medical-ese." Make him explain what you don't understand, and insist that it be in "people English." You won't regret the effort. I hope all works out well for you. Ruthie. email@example.com
Sheryl C's October 14 reply to Caroline's October 9, 2003 - Hi Caroline, Thanks for sacrificing the time with your husband for our country so that he can help keep us safe. Thank him for all the hardships he has to endure. Stress is a big factor in increasing angina and CHF symptoms. When I have an increase in chest pain, I sit myself down and think about what new stresses I have. If they are caused by something under my control, I try to remedy the problem. If not, I do breathing exercises, talk them over with a friend or have a plain old fashioned cry.
I hope you have a good support group to help you deal with all your problems. It sounds like getting a second opinion was a good plan for you. How did that go? As young as you are, think about retraining for a job where you can work out of your home, like medical transcriber. Some of those courses can be taken online. Check with your local DHS to see if you qualify for help paying for the schooling. Good luck with everything, Sheryl C. firstname.lastname@example.org
Lydia's October 14 reply to Pam's October 13, 2003 - Hi Pam, I agree with Jon that you seriously need to find a CHF specialist - not just a cardiologist, but one who specializes in CHF. When all this started for me was when I went to my internist because I was always very tired. When he gave me an EKG, he said, "How did we miss this?" My CHF specialist said my CHF had been going on for a long time. I will always go to specialists from now on.
As for the edema, I never get it in my feet or ankles. Mine settles in my stomach and face. Please do see a specialist, and like Jon said, ask a lot of questions. I have all my questions written down on paper before I go to my appointments. God bless, Lydia. Flanders66288@cs.com
Wadine, October 15, 2003 - Hi, I was diagnosed with dilated cardiomyopathy 07/02 and diagnosed with diabetes 07/03. My primary physician has me on 3 shots of insulin per day. She says that pills for diabetes will not work well due to medications for my heart. I take 50mg Coreg, 40mg Lasix per day, 50mg Cozaar, and 250mg imipramine per day.
Does anyone else here with type 2 diabetes and cardiomyopathy know anything about medication for diabetes? I love you all. Wadine Toliaferro, Philadelphia, Pennsylvania, age 54. email@example.com
Joseph P, October 15, 2003 - Hi Everyone, I had an ICD implanted almost 2 years ago and I have a small amount of strange feelings in my left arm, from pain bad enough to take tylenol to complete numbness. If I lie the wrong way when I rest, it shuts off the circulation to my arm. I have had shooting pains and now it is off to the doc to see if he can do anything.
Could it be posible that the inplanted wires in the vein are causing a backup in flow or maybe the ICD has settled against a nerve? Any suggestions? Thanks, Joe. firstname.lastname@example.org
Joe S, October 15, 2003 - Hi, Last month I went to my cardiologist. She told me I am getting better every day and as soon as my Lasix and 2.5mg Zaroxolyn are gone to switch to 40mg of Benican with 12.5mg of HCT once a day. I did this 6 days ago and since then have gained back 10 lbs. I have also been under a lot of pressure, but I still don't think this should be happening. Any ideas or suggestions? Joe S. email@example.com
Jon's note: Immediately lower your sodium intake, restrict fluids to 2 liters daily, and call your doctor to get back on Lasix as your diuretic.
Dan, October 15, 2003 - Hi, I am very new to the CHF.patients.com web site. I was searching the Internet because my cardiologist had recommended a pacemaker as a potential next step. I came across this web site and have made it a "favorite" as the information provided has been excellent! Thanks Jon! Thanks for creating and maintaining the site and thanks to all of you that contribute by sharing your experience online!
In 1993 I had a heart attack and triple bypass surgery. I made some modifications to my life style and seemed to progress until August of 2001. That's when I began taking 50mg atenolol. I took the first tablet that night and did not sleep much of the night. Over the next few days I noticed a bloated feeling and tightness in the chest. While walking I experienced slight dizziness, profuse perspiring, breathlessness and overall weakness. After taking the drug for 6 days, I stopped taking atenolol.
I have always been trusting of my doctors, but this incident caused me to go to the Internet to search out potential drug side effects. I discovered that I had some of the worst symptoms and that they were usually associated with asthma. I consulted with my pharmacist and he confirmed that I probably had undiagnosed asthma. My doctor's office decided to change my medication to another beta-blocker, but not to have me come in or to refer me to a cardiologist or pulmonologist.
It was then that I realized that someone, namely me, had to take control of my well-being. I fired this PCP, made appointments with both a pulmonologist and cardiologist and switched to a new PCP. It was then that I was diagnosed with CHF when the stress and echo tests results showed that my EF was between 10 and 14%. The cardiologist over the last 2 years has added digoxin (Lanoxin), Coreg, Avapro, furosemide, lisinopril, and Plavix to my Lasix, Accupril, allopurinol, and synthroid that I was already taking.
On December 13 of 2002 I went to the ER with breathing problems. I had a heart catheterization done the same day with a stent implanted in the circumflex. One artery is still blocked but nothing was done at this time as it might require surgery.
May 9 of 2003 my PCP prescribed 4mg Avandia as a supplement to my insulin. I am a type 2 diabetic also. I started taking it and reported back to him on May 22, 2003 that my 14-day blood sugar had risen 53 points. My dosage was changed to 8mg and I took this until June 3, 2003. I stopped taking Avandia after seeing that my blood sugar 14 day average had risen to 232 or 74 points higher that my May 9 of 2003 14-day score of 158. During this time I noted less stamina and more difficulty in breathing while doing my exercise of walking. Once again, I researched the Internet and many questions arose as to why Avandia was prescribed to me with my medical conditions. I now have a new PCP.
Next Tuesday I will be seeing a CHF specialist listed on the CHFpatients.com web site. I write this to give you an idea of the potential problems we face with seeking medical treatment. Each one of us has to research, ask questions, and demand that our doctors listen to our complaints. Take charge of your own well-being! I have found that making friends with my local pharmacist is very important. I do not believe in the warehouse pharmacy. Give me a local pharmacy with real people that know your name and know what meds you are taking. firstname.lastname@example.org
Jon's note: Lisinopril and Accupril are both ACE inhibitors - do you take both?
Gregg, October 15, 2003 - Hi, I've been on SSD for the past 4 years, so my 3 year review is a year late, I guess. They have denied SSD continuation on the merits of my EF going almost back to normal from drug therapy. I'm currently going through a reconsideration process and have yet to see a SSA doctor. My question is, if I find a job while this process is continuing, and I find that I can no longer do the job because of my symptoms, will this jeopardize my award if granted - by going back into the work force for such a short period? I'm not sure I'm able to do the work until I try, so to speak. Thank you. email@example.com
Katherine H's October 15 reply to Joseph P's October 15, 2003 - Hi Joseph, You might want to go to www.implantable.com and post your question under pacemaker patients. There has been lots of discussion there about problems like you are having. I know I had to have my pacemaker moved because I was getting a frozen shoulder. It happens more often than docs are willing to acknowledge. Good luck! firstname.lastname@example.org
Marly's October 15 reply to Wadine's October 15, 2003 - Hi, I've had IDCM for almost 10 years and type 2 diabetes for almost 20 years. I'm now insulin-dependent at a dosage of 35 units Insulin NPH and 30 units Insulin regular twice a day. I used to take also Avandia (rosiglotazone) and Glucophage (Metformin) but stopped these meds after learning that these are contraindicated for CHF patients. I also take an herbal preparation from ampalaya (Momordica charantia plant) extract in capsules made in the Philippines. email@example.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 Jon C.