Scott Brown's 6-1 reply to Tim S' 5-30 weight gain and Coreg
Scott Brown's 6-1 reply to Vicki's 5-29 low blood pressure
Pam E 6-1 updates, genetic disorder
Pam E's 6-1 reply to Joe S' 5-29 coronary artery disease
Pam E 6-1 views on stopping heart failure meds
Dan Hunt's 6-1 reply to Jon's 5-30 good discussions here & more
Karen F 6-1 outstanding news!
Jacky F 6-1 vacation going well
Joe S' 6-1 reply to Pam E's 6-1 coronary artery disease
Suzy B 6-3 does anyone take L-arginine?
Jon 6-3 page updates
Tracey C 6-4 prayer request
Jane M 6-4 worsening CHF & possible disability - seek suggestions
Barb H 6-4 are gambling machines risky around ICD?
Maria's 6-4 reply to George's 5-31 heart failure from trauma experience
Karen F's 6-4 reply to Barb H's 6-4 ICD information resources
Karen F 6-4 for ICD wearers
Stephanie 6-6 what to take before dental work?
Jon's 6-6 reply to Stephanie's 6-6 what to take before dental work
Nancy S 6-6 echo report questions
Eris D 6-6 Vioxx, kidney failure, glucosamine questions
Charles S' 6-6 reply to Joe S' 6-1 CAD
Scott Brown's 6-6 reply to Barb H's 6-4 casinos and implanted devices like ICDs
Sherrell G's 6-6 reply to Stephanie's 6-6 antibiotics and dental work
Karen F's 6-6 reply to Scott Brown's 6-6 casinos
Jon 6-7 if you get an e-mail from me,...
Mel G's 6-7 reply to Eris D's 6-6 glucosamine for osteoarthritis experience
Michael S' 6-7 reply to Barb H's 6-4 slot machines and ICDs
Elaine M 6-7 cough & sleeping problem, and more
Jim M 6-7 seek info comparing ACE inhibitors to each other
Roz W's 6-7 reply to Stephanie's 6-6 antibiotics for valves experience
Shelby's 6-7 reply to Jim M's 6-7 adjusting to beta-blockers & more
Jon's 6-7 reply to Shelby's 6-7 ACE inhibitors and beta-blockers
Nancy S' 6-8 reply to Eris D's 6-6 glucosamine experience
Joseph P, June 8 stress echo experience
Jon's 6-8 reply to Joseph P's June 8 stress echo
Jon 6-8 been preoccupied
Joe S 6-8 post-surgery life, casinos & hearts
Sue 6-8 seek continous outpatient dobutamine experiences
Ron Pollan 6-8 ICD experience
Darlene 6-10 metformin for diabetic CHFers questions
Janet H 6-10 seek good multi-vitamin for heart failure
Joseph P's 6-10 reply to Joe S' 6-8 casinos
Charles S' 6-10 reply to Sue's 6-8 living with IV dobutamine
Norma 6-10 questions about food, tachycardia & more
Diane P's 6-10 reply to Darlene's 6-10 glucophage and CHF
Jon's 6-10 reply to Diane P's 6-10 glucophage, CHF, and doctors
Lori K 6-10 my doctor on apnea
Tom S' 6-10 reply to Joseph P's 6-8 ways to go out
Tracey 6-11 bummed out, test results down, seek MUGA experiences
Jon's 6-11 reply to Tracey's 6-11 test results, MUGA experience
Joseph P's 6-11 reply to Tom S' 6-10 the cowboy experience
Ruthie A's 6-11 reply to Darlene's 6-10 metformin experience, doctors & more
Jon's 6-11 reply to Ruthie A's 6-11 doctors make mistakes
Nancy S' 6-11 reply to Jon's 6-6 found guidelines for preventing endocarditis
Tracey C's 6-11 reply to Jon's 6-11 test limits, getting worked up & more
Jon's 6-11 reply to Tracey C's 6-11 test limitations, experience & more
Karen 6-11 SSD review is here - what do I do?
Mel G's 6-11 reply to Tracey's 6-11 MUGA experience
Carol O's 6-11 reply to Tracey's 6-11 MUGA experience, test numbers
Donna 6-12 seek help about foot blisters
Ruthie A's 6-12 reply to Jon's 6-11 great news about Edecrin & more
Jon 6-12 update
Janet 6-12 does anyone else get little head shocks?
Tom S' 6-12 reply to Karen's 6-11 Social Security Disability review experience
Tracey C 6-12 making progress, thanks
Craig B 6-12 being really aware of my heart beat
Karen F's 6-12 reply to Karen's 6-11 Social Security Disability review
Jon 6-13 posts will be delayed
Peggy Carter 6-14 chest pains are back despite Coreg - anyone else?
Cindy 6-14 are tanning beds okay?
Jon's 6-14 reply to Cindy's 6-14 tanning beds, sunlight and heart failure meds
Cindy 6-14 Atacand HCT question
Katherine H 6-14 InSync pacemaker url
Fred H 6-15 painful ear - anyone else?
Joe W 6-15 seek Doc Silver's book and more
Jon's 6-15 reply to Joe W's 6-15 Dr. Silver's book, answer page & finding what you need
Jim 6-15 Social Security Disability
Ben B's 6-15 reply to Jim's 6-15 Social Security Disability
Tom E 6-15 do many people go into & out of CHF back & forth?
Scott Brown's June 1 reply to Tim S' May 30, 2002 - Hi Tim, I am not sure about digoxin causing weight gain. I can confirm that Coreg can definitely cause sudden weight gain. This is especially true while increasing the dose to maintenance level, so keep up the exercise. The 22 lbs weight gain is one of the worst loads you can put on your weak heart. I am at an all-time high for weight so I am struggling with the same problem on Coreg. For all of the lousy side effects, it still appears to have terrific results. Scott Brown. firstname.lastname@example.org
Scott Brown's June 1 reply to Vicki's May 29, 2002 - Hi Vicki, There is something that doesn't add up about your condition. Your EF seems quite normal however, your blood pressure seems to be very low for a normal person. I think you said 80 over 40 to 80 over 60. Those are very low numbers even with an ACE inhibitor. It sounds like you feel pretty crummy, so I wonder if you are out of cardiomyopathy yet?
I'm not sure why your meds would create the feeling you have, although some of the side effects can be similar. I realize meds can affect different people differently, so it is not impossible. Find out why your blood pressure is so low if your heart is virus free and you have no CHF symptoms. Scott Brown. email@example.com
Pam E, June 1, 2002 - Hi all, I just thought I would post again as it has been several years since I have done so. I have good news and other news. The good news is that my EF is up to 56% from 40%, I think due to beta-blocker use. For those who don't know me, I have cardiomyopathy that is probably familial. The other news is that they think I have atypical partial lipodystrophy, which is a genetic disorder that they can gene test for. It will tie all my conditions together. If anyone is interested in talking to me about this, please email me. Jon, I will update my Who's Who soon. Pam E from Australia. firstname.lastname@example.org
Pam E's June 1 reply to Joe S' May 29, 2002 - Hi, I read your post and if I read you right, you are saying that because you had a single vessel bypass you now longer have coronary artery disease. I am sorry to inform you that CAD usually occurs in many vessels at one time. The severity of the blockage determines whether they bypass it. Obviously, you had one vessel totally or nearly totally blocked but other vessels not only in your heart but throughout your body will be affected by the events that blocked your artery. Pam E. email@example.com
Pam E, June 1, 2002 - Hi, For those that don't know me, I am an RN in Australia. Like others, I have had a great improvement in EF, which is now 56% but both the cardiologists that I see say meds for life. When you think about it, it is the meds that are taking what they call the afterload of your heart so it can function. Stopping meds totally would increase the hearts work load, putting it at great risk of rebounding into damage. In Vickie's case, if I was her I would be looking to lower the Coreg very slowly down to 12.5 BID, and drop the digoxin if not in a-fib as Jon suggests. I would keep the ACE inhibitor. I would do it very slowly, one drug at a time, and keep being monitored closely. Pam E. firstname.lastname@example.org
Jon's note: The official treatment guidelines say, "ACE inhibitors should be taken indefinitely at doses proven effective in trials."
Dan Hunt's June 1 reply to Jon's May 30, 2002 - Hi Jon, I pretty well agree with all you said. For the ACE inhibitors, one needs to look at what caused the heart to fail. In Vicki's case you are absolutely correct. Hers was caused by a disease that she needs to continue to guard against. In a case like mine where it was caused by an accident, I can be more aggressive in reducing the drug therapy, even though I'd love to swap EF numbers with Vicki!
Karen, you have taught me once again the importance of good proofreading. I do take a garlic preparation that contains a small amount of licorice to knock down the smell of the garlic. I should have written garlic with licorice instead garlic or licorice. My face is red!
Good discusions here. I've given this web site address to the physicians running the CHF clinic I go to, and my electrophysiologist. email@example.com
Karen F, June 1, 2002 - Hi, Well, I'm sitting here SOB. "Why?" you ask? Well, I'll tell you! I've been doing a Happy Dance! My SSD acceptance letter arrived in the mail today! I will be receiving my first payment on or about 7/17. I had my appointment to file the papers and had my interview at the local field office on March 12, so I think that went through very quickly. I never had to see one of their docs or anything. It just sailed through on the first try. Okay, I've caught my breath so now I am going to start dancing around again. All this happiness can't be good when you have CHF! firstname.lastname@example.org
Jacky, June 1, 2002 - Hi everyone, I am just checking in while I have access to a computer at a library in Canada. My vacation is going well. I hope everyone on the board is well, Jacky. Jackymwb@aol.com
Joe S' June 1 reply to Pam E's June 1, 2002 - Hi Pam, I appreciate your input, however the surgeons report said CAD existed in only one artery which I have known was 70 to 80% blocked for several years. When I asked one of the cardiologists that practice where I go what would happen if it blew, she said its a teeny tiny artery, so you'll have a teeny tiny heart attack. The other artery the cardiologists talked about blockage has even gone down over the same years. Why can't I take care of it with diet and exercise like I've taken care of everything else, except that stupid valve? Hey I'm 63 years old, my LDL is 130 and only one artery is partially blocked. I've known people with 3 or more that are 95% blocked. Joe S. email@example.com
Suzy B, June 3, 2002 - Hi, I have not posted for a long time, but drop in occasionally. I have class 3 heart failure. My cardiomyopathy is secondary due to the rare muscular dystrophy I have, Emery Dryfuss. It took almost 15 years to get a proper diagnosis because it is so rare. Only 4 woman in my area have it: myself, my niece, my great niece, and one woman not related to us.
Does anyone take L-Arginine to strengthen their heart? If so,how do you feel? I feel good so far. I take 1000mg 3 times daily along with 100mg CoQ10 3 times daily and 400IU vitamin E daily, along with my regular 16 meds for various disorders I have. I had my evaluation for heart transplant in November of 2000. Afteward, as I was leaving my room for home I had a stroke from a blood clot in the right side of my brain, from being off my Coumadin too long. I had temporary left side paralysis, but enough damage to set back any progress I had made. I am still working with physical therapists twice a week. I am coming along slowly, but have developed esophageal dysmotility as a result of my EDMD. Both my cardiologists and my MD doctors believe in these supplements and highly recomend them. Suzy B. firstname.lastname@example.org
Jon, June 3, 2002 - Hi everyone, The following pages on my site have been updated:
Tracey C, June 4, 2002 - Hi everyone, I am requesting prayers for my coworker's friend. He's 21 and was placed at the top of the transplant list last night. They just got the call today that they found a new heart for him; less than 24 hours, amazing. His is expected to be a very complicated surgery so he can use all the prayers he can get. Thank you. email@example.com
Jane M, June 4, 2002 - Greetings, I don't post much but read daily. I have a dilemma that maybe someone can help me with. I have chemo-induced cardiomyopathy and CHF but I haven't been hospitalized since 12/97 at my original diagnosis. I took 3 months off from school (I teach fifth grade) and have been working since then. My EF at diagnosis was 18% and went up to about 50 to 55% two years ago. I just had another echo because I told my doctor that I just wasn't feeling well. I saw my new cardiologist last Thursday and he said my heart function was definitely taking a downhill course. I am at maximum doses of medications and since I have severe asthma I can't take Coreg. I tried it at the lowest dose and had some real problems.
My doc recommended disability and said he would do everything he could to make sure I got it. I'm also fighting immune problems and I had a whole mess of lab tests done (some sent to California) and I see the infectious disease specialist in July. Teaching is very stressful and I have concluded that it is getting too much for me to handle.
I'm sorry I've rambled so much but this is so frustrating! If anyone can offer me any suggestions, I would appreciate it. I've read the disability page and I think I'm more confused than ever. Thanks for letting me vent, Jane M. firstname.lastname@example.org
Barb H, June 4, 2002 - Hi all, I'm writing on my father's behalf; he's not very computer literate. About a month ago, my dad had an ICD/pacemaker installed to help combat his arrhythmia and heart failure. I've read that with the ICD, one of the things he should avoid is being near slot machines. However, he is feeling so strong that he wants to go to Atlantic City. Has anyone with an ICD heard similar info and more importantly, does anyone with an ICD have any advice or experience with being near gambling devices? Thanks very much, Barbara for her dad John. BarbHutter@yahoo.com
Maria's June 4 reply to George's May 31, 2002 - Hi George, I was interested in your post because I have had the same question about my husband's heart damage. His is not from disease or heart attack but from a piece of concrete that came through the windshield of his car 2 years ago. His EF was 10% after the accident and at the last echo was 50%. His first Vo2max test result was 20. He was told his heart muscle damage was 50% too. No one ever mentioned hibernating muscle but I can certainly see where the muscle could do such a thing. I would like to know more about that.
There are many things my husband can't do anymore but as time goes on he continues to layer things back in. He was a physical guy before the accident and that is perhaps the biggest adjustment he has had to make, that and the fatigue. However, he does work every day at a new, less strenuous job, and is starting to learn many things about life and what it means to have a good life that he never would have learned had this not happened to him.
For example, he started doing Ti Chi and being involved in his elderly parents' health care, things he would have been "too busy" to do before. Someone recently said to me that every day there is life there is hope. All my best wishes. Thanks, Jon. email@example.com
Karen F's June 4 reply to Barb H's May 31, 2002 - Hi Barb, Is your father's device made by Medtronic? He should have gotten materials at the time of the implant with info from the manufacturer. If you are still unsure, you can always contact Medtronic directly and ask. Who would know better than the manufacturer? Call 1-800-328-2518 or use the form at www.medtronic.com/corporate/contact.jsp to send an e-mail.
If the device was made by a different manufacturer, do a web search on that manufacturer's name. You should be able to find some contact info for the manufacturer on the Internet that way. The good news is that if he pushes this and then finds that he feels "funny" while gambling at the machines, all he has to do is step away from the machines and things will revert back to normal. Then he'll just have to learn how to play Blackjack or some other table games instead of the machines! Good luck. firstname.lastname@example.org
Karen F, June 4, 2002 - Hi, Just a reminder to those with mechanical implants (ICDs, pacemakers, heart valves, etc.) to keep your registration info on file updated with the manufacturer of your devices. This is important for two reasons. First, if there is an emergency and you are being treated in a strange facility by personnel unfamiliar with your background, they can get the correct info about your implants directly from the manufacturer. Secondly, if there is ever a recall or problem with one of the devices, the manufacturer can contact and alert your doctor with the specifics involved in your case.
While at the Medtronic site looking up the info for my reply to Barb H, I noticed their reminder to keep your info current. I realized that 5 years ago I had moved, plus my contact doctor had retired, but I had never thought to update my info with Medtronic. I called Medtronic's 800 number listed for that purpose and was able to quickly and easily get my current info on file and they will be sending me new wallet cards to reflect the changes.
Your body isn't a refrigerator where you can stash the warrenty somewhere and go dig it out years later if something goes wrong. I have a Medtronic aortic valve replacement, DDD pacemaker and Medtronic leads implanted. If something goes wrong with these parts, it is life threatening and having old info on file may delay getting the best care in such a situation. email@example.com
Stephanie, June 6, 2002 - Hi, I am just wondering what people take for a pre-med before going to the dentist. My dentist prescribes one thing and my heart doc prescribes something else. I'm also interested in how much and how many doses you take. Mine has changed several times over the last few years. They haven't prescribed a follow-up dose the last few times, but I had a friend who died because he skipped his last dose - 6 hours after the appointment. Thanks, Stephanie. firstname.lastname@example.org
Jon's June 6 reply to Stephanie's June 6, 2002 - Hi Stephanie, It depends on whether you have leaky valves or an artificial valve. As far as I know - and I am not an expert or a doctor - if you have moderate or serious valve regurgitation, you need to take antibiotics before and after dental work. If you take a blood thinner (anticoagulant) like Coumadin (warfarin) you may need to stop taking it before some kinds of dental work.
Talk to both your cardiologist and your dentist about this. If you have only mild valve regurgitation, I think the American Heart Association guidelines were revised to say you do not need to take the antibiotics. Be sure to ask your doctor on this one! Jon.
Nancy S, June 6, 2002 - Hi everyone, I just received a report from a cardiologist and wondered if someone could tell me if it's good or not. I'm not really sure what all this means. The conclusions were:
This is the result with the Medtronic ICD. Thanks for the help. This site and it's wonderful people has helped me keep my sanity for the last couple of years, Nancy. email@example.com
Eris D, June 6, 2002 - Hi, About a year ago, I was in the hospital with pneumonia and at that time was told that my creatine was high and my hemocrit level was low. I was given a blood transfusion at that time and my hemocrit returned to about 36 from the mid 20s. Over the year my hemocrit went back down to 31 but I did not know there was a problem with my kidneys because the doctor never mentioned it again. Now suddenly she is saying that I have some degree of kidney failure, which relates to my lowered hemocrit.
She has started me on 3 shots of Epoetin Alfa (EPO) a week to increase the hormone that produces red blood cells. About 18 months ago this doctor prescribed first salsalate and when that caused immediate problems for me, then prescribed Vioxx for me. She did not say that these drugs might affect my kidneys but I now believe this might be what caused the above results. One good thing is that I take Losartan, which I see helps prevent/slow kidney damage.
Does anyone know if stopping the Vioxx will help my kidneys function better? Is chronic kidney failure reversable? On another matter, what do you know about using glucosamine as a substitute for Vioxx for osteoarthritis? firstname.lastname@example.org
Charles S' June 6 reply to Joe S' June 1, 2002 - Hi Joe, I am no doctor and I hate to burst your bubble but CAD is CAD. I had a heart transplant and am still being treated for CAD.
Even though I am only 6 months post-transplant, I have to have a left heart cath done on the 17th just to be sure there is no blockage. I also had tests done to check my stroke risk. They showed a higher than normal risk level due to low circulation in my left foot. CAD never goes away, it only hides for awhile. email@example.com
Scott Brown's June 6 reply to Barb H's June 4, 2002 - Hi Barb, I bet if they removed all of the people at casinos who had ICDs and pacemakers, the casinos would be half-empty. Nobody told my dad not to go to the casino. He went many, many times and never had a problem. There are no strong magnetic fields in modern gaming machines. Primarily, I would watch out for the thick smoke in a lot of casinos. As a CHFer, I find the breathing at its worst after an extended period in a casino. Also, I think it is the excitement of the play that makes me feel worn out the next day. Just an observation. I hope you have a good time, Scott B. firstname.lastname@example.org
Sherrell G's June 6 reply to Stephanie's June 6, 2002 - Hi, My dentist prescribes 500mg amoxicillin before my teeth cleanings. I take 4 capsules one hour before my appointment. When I was diagnosed almost 8 years ago, I had to take some before the procedure and some afterward, but he said the recommendations had changed. I have been lucky not to have had any dental problems. My heart doctor approves of this order, Sherrell G. email@example.com
Jon's note: If anyone finds the 1997 changes to the guidelines (I do believe Sherrell is right) at AHA, please post the Url!
Karen F's June 6 reply to Scott Brown's June 6, 2002 - Hi Scott, Good point! Now that you mention it, I've had a pacer since 1986 and have been to the casinos many times with no ill effects. Knowing the general demographics of slot players (a great many are senior citizens), I think the casino machine manufacturers would have to take pacemaker and ICD safety into consideration when designing the machines.
Try to go during an off-peak time after the bus-day-trip-people leave for the day and not on a weekend day. Many machines now have seats at the slots, which would be easier on him than having to stand. Since the casinos will be less crowded during these off peak times, it will be easier to snag one of those machines. Many casinos have non-smoking slot rooms as well. Make sure he monitors his fluid intake (those complimentary beverages can add up before you know it) and avoid alcohol. He should be able to make some smart meal choices with the large variety of restaurants and buffets available. Always feel free to ask to see a menu before deciding where you want to eat - the staff will be glad to show you one. That way he's not going to be stuck somewhere with a limited menu of mostly high-in-sodium choices. If he is on diuretics, scope out where the bathrooms are before jumping in and playing because we know that when the urge hits, we don't have time to fool around searching for the facilities in the maze of machines. Good luck! firstname.lastname@example.org
Jon, June 7, 2002 - Hi everyone, I have received 2 reports of people getting e-mails with me that have attachments, possibly virus-infected. I confess to being quite puzzled. I'll describe the situation and if anyone has any ideas, please let me know.
I can reinstall my anti-virus program in safe mode and see if that helps but would rather not unless I am sure there is an infection. :-) I don't send unexpected attachments. In fact, I rarely e-mail anyone - I just answer messages sent to me. So if you get an e-mail that claims to be from me and you were not expecting it, please save the message or the header, and forward it to me with a note in the forward explaining why it's coming my way. If I have a virus, I certainly need to kill it but I have to find the booger first! Jon.
Mel G's June 7 reply to Eris D's June 6, 2002 - Hi Eris, They took me off my NSAID for osteoarthritis when I was diagnosed with heart failure. I then tried 1000mg per glucosamine per day and found that it did absolutely nothing for me. I kept it up for 3 weeks and then stopped. I haven't found anything to help except analgesic pain relief, which isn't really very satisfactory. That's my two cents. I've heard it works well for some. I certainly hope it works for you. :-) email@example.com
Michael S's June 7 reply to Barb H's June 4, 2002 - Hi everyone, I just came back from a trip which took me through Utah. We stopped in Wells, Winnemucca, and Sparks, and gambled exclusively on slots. I have a Medtronic ICD and don't seem to be having any side effects. Gambling was not mentioned in any of my literature I got with my ICD. I was just told to keep electrical sources at least 6 inches away. Now if I just didn't mess up with that half-inch drill yesterday. My problem is I keep forgetting stuff like the 6 inch rule. I don't think I did anything though, as my cardiac specialist said it would result in shocks or funny pacing and neither is happening. Anyway, when I mess up I say a prayer or two for help, Michael. firstname.lastname@example.org
Elaine M, June 7, 2002 - Hi, I have been reading many of the posts and The Archives and still have found little, or should I say one web page on blood transfusions causing hera failure. I guess I will have to accept the fact that I have it, need to take a bazillion meds for it, and modify some things in my life to try to make it better.
The Zestril I am on has also caused that awful cough keeping me up half the night, and a wedge doesn't help at all. Since I also use a CPAP, the coughing is really a problem. Any other suggestions would be welcome. ElaineM43@aol.com
Jim M, June 7, 2002 - Hi, I was diagnosed with idiopathic DCM about 8 months ago. This is only my second post, but I read this message board all the time. I'm wondering if anyone has - or knows where to find - information comparing various ACE inhibitors. My doctor just switched me from 10mg enalapril twice daily to 10mg Zestril once daily. I'm having a problem with low blood pressure and he thought this might help. I'm just wondering what the real difference is between these drugs, other than the once-daily dosing of Zestril. email@example.com
Roz W's June 7 reply to Stephanie's June 6, 2002 - Hi Stephanie, I've been using prophylactic antibiotics for years to prevent infection in a prolapsed mitral valve. I think I have been through a half dozen or so, changing after a variety of side effects. I have found one that works for me and is much less trouble to take. It is 250mg tablets of Zithromax - two tablets two hours before procedure - avoiding antacids at least two hours before taking the tablets. That's all. I hope your cardiologist and dentist approve and it works for you. Good luck, Roz. RWarriston@AOL.com
Shelby's June 7 reply to Jim M's June 7, 2002 - Hi Jim, I also have very low blood pressure. Meds can be tricky but you need to be on the right ones. Coreg is much more important than Zestril, and if your BP is too low, then most doctors recommend cutting back on the Zestril or cutting it altogether in favor of a higher dose of Coreg or another beta-blocker. My doctor cut my Zestril dose to 2.5mg in order to up my Coreg dose and I've been doing well.
Another thing to keep in mind is that your body does adjust to a lower blood pressure over time. It may take several months, but you do adjust. I have been able to slowly raise my Coreg dose by taking it easy, monitoring my blood pressure, and giving my body time to get used to it. firstname.lastname@example.org
Jon's June 7 reply to Shelby's June 7, 2002 - Hi everyone, I am not a doctor but I know that while my CHF doc will cut an ACE inhibitor dose to get a beta-blocker close to where he wants it, he considers ACE inhibitors the front-line CHF treatment and would not permanently discontinue one in favor of a beta-blocker.
I think it's for several reasons: ACE inhibitors are much more thoroughly tested over time, they increase exercise ability in more patients than beta-blockers and they also improve quality of life in more patients than beta-blockers, as well as reversing remodeling with a vengeance. :-)
Beta-blockers may reduce mortality to a greater degree but since most beta-blocker trials added them to patients already on ACE inhibitors, it's not sure if a beta-blocker alone would have the same mortality benefit. Of course, this is all off the top of my head, and I am ready to stand corrected. Jon.
Nancy S' June 8 reply to Eris D's June 6, 2002 - Hi Eris, Several years ago I went to an arthritis specialist and he prescribed glucosamine and chondroitin sulphate. He told me that it may take awhile to start working and at that time they were still doing trials on it but so far 90% were having good results. I'm not sure how long it took, but it did help me. I don't take them anymore because I have now been diagnosed with rheumatoid arthritis and I was in such pain that I'm not sure if it stopped working for me or if it just wasn't strong enough. I think it was the latter. I have recommended them to a neighbor and my father, who both got good results from them. Be sure that you have the mixture and not just glucosamine. I hope you feel better soon, Nancy. email@example.com
Joseph P, June 8, 2002 - Hi, I went for a stress echo yesterday and the testing people made me feel like I failed it . Then I told them I pay the bills for this test and I caught them by surprise and they became a little nicer and explained what was going on. I went up to my CHF center and talked to the people there and I told them what the testers said and they said I did rather well even though I only completed 75% of the test. I could only only go 5 1/2 minutes and almost fell because the testers wanted me to go further and I could not because of fatigue. Thanks, Joseph P. firstname.lastname@example.org
Jon's June 8 reply to Joseph P's June 8, 2002 - Hi Joseph, It's not really the kind of test you pas or fail. ;-) It's just another way to measure how well your heart, coronary arteries, and heart valves are functioning, is all. On this kind of test, your CHF doctor's report is much more accurate than whatever the testers say. They don't have the training and experience at interpreting test data like your heart doctor does. They also don't know your medical history, specific conditions, and previous test results like your heart doctor does. I'd go with whatever he tells you on this. Jon.
Jon, June 8, 2002 - Hi everyone, I have been kind of preoccupied this week with researching and writing a full new page on pulmonary hypertension - an all-in-one sort of deal. My brain hurts. If anyone has first-hand experience with PH, please let me know by e-mail. Maybe we can work your first-hand experience into the page for a better perspective overall. Jon.
Joe S, June 8, 2002 - Hi, Well, I and several nurses at this site have discovered another thing the surgeons don't tell you. After surgery, when the heart, lungs and kidneys start to return to whatever is normal size, we are far more sensitive to sodium intake and edema. It only makes sense, there's less room in there.
On to something more important, casinos and your heart. I betcha dollars to donuts more heart attacks occur in casinos then anywhere, and it has nothing to do with electronics, Joe S. email@example.com
Sue, June 8, 2002 - Hi, My husband is in class 4 CHF. He will be getting a permanent IV site on June 11. This will enable him to be administered dobutamine 24/7. He will be wearing a fannie pack which houses the equipment, enabling him to remain mobile. We know of no one else who uses this device and would like to hear from someone who has had this experience. Laineyblack@aol.com
Ron Pollan, June 8, 2002 - Hi, I have been under treatment for CHF since early 1998. I am 70 years old and have pastored and run businesses until just recently. I still try to work a little every day. My EF is 28% and I just completed a one year test with the Guidant ICD. There are no warnings that I was informed of for electrical or magnetic fields with this unit. I believe the device has been a help. On each of my 3 month tests I was a little stronger. It was just recently approved by the FDA. I would sure recommend it. May the good Lord bless each of you. firstname.lastname@example.org
Darlene, June 10, 2002 - Hello everyone, Having a massive MI, CHF, and now diabetes, I was just reading that people with these conditions and especially heart failure are being inappropriately described metformin, which can cause a lactic acid condition. I have been put on metformin for 3 weeks, and I see the doctor June 20 to see if I will need insulin instead of this drug, due to the uncomfortable symptoms I am experiencing, including headaches, dizziness, feeling choked, nausea, and just not feeling good. With all the bad things said about Metformin, why be put on this drug then? I would appreciate any comments. Thanks, Darlene. email@example.com
Janet, June 10, 2002 - Hi, I'm looking for some good brand names of multi-vitamins that CHFers like. I take a multivitamin, 500mg vitamin C, fish oil, CoQ10, and calcium, in addition to my regular meds. I'd really like to cut my pill intake in half but I can't find a good "multi" that covers all the bases for CHF. Any suggestions? firstname.lastname@example.org
Joseph P's June 10 reply to Joe S' June 8, 2002 - Hi Joe, I could not think of a better way to go than to have a big win and go into cardiac arrest, Joseph P. email@example.com
Charles S' June 10 reply to Sue's June 8, 2002 - Hi Sue, Been there, done that. I was on a dobutamine drip for 5 months. It really is not so bad. I did not have any problems with the IV site or with the fanny pack. If your husband develops any signs of infection, the IV will be one of the first things they remove and suture, but they just put in a new one. The permanent IV site is a lot easier than being stuck all the time. If he is lucky they will use a large enough needle that they can draw all of his blood tests through it. It saved me a lot of sticks! Charles. firstname.lastname@example.org
Norma, June 10, 2002 - Hi everyone, I am now in Canada for the summer, so I have had to sign on with AOL here because it costs $2.95 US per hour to stay on my US connection. On the drive up from Florida I had quite a bad episode of sinus tachycardia. It was as if a switch had suddenly turned on and my heart started to pound and go faster and faster. I tried holding my breath for 5 seconds at a time and got my pulse down to 100, but then it seemed as if an electric shock had started on the soles of my feet, worked its way up to my heart and away it went again! The paramedics came and gave me oxygen and an ECG, took my blood pressure, etc.
In an hour I was back to normal, athough the next day I felt as if I'd run a marathon, completely wiped out. I hadn't had one of these attacks for 4 years so I put it down to some gravy with MSG I had eaten at Denny's; the paramedics said the restaurants in Georgia and all through the South lace their food with MSG. Has anyone had this sort of reaction from food? It isn't just the fast heart beat (l25-130) that is frightening so much as the heavy pounding.
Four years ago they also couldn't find a cause for it so they put it down to reaction to medication. It sounds nonsensical I know, and my doctor has told me that it is, but I feel that by driving many miles, my electrical nervous system gets out of kilter and when I placed my laptop on my lap, I could feel the vibration from the computer, which seemed to make a nervous vibration start up in me. I quickly put the computer down when I felt it starting but by then it was too late. Needless to say, when I used the computer again on the road, I kept it on a table! Regards, Norma. Normadroz@aol.com
Diane's June 10 reply to Darlene's June 10, 2002 - Hi, I am being followed for CHF at a large University transplant center and am a newly diagnosed diabetic with 3 MIs, quadruple bypass, and and now diabetes. My local internist put me on another drug and it was not controling my diabetes and I gained weight. My CHF doctor sent me to see an endocrinologist at the diabetic center there, who put me on glucaphage. I have done much better with my daily tests and lost some weight and feel better. I am waiting to get the next A13 to get the true score. I was told that if I went into severe heart failure to quit taking it. I've had no noticable side effects and have had positive results. I am being followed closely by people I trust. Good luck, Diane. email@example.com
Jon's June 10 reply to Diane's June 10, 2002 - Hi Diane, and everyone who has diabetes. Even if you trust your doctors, please understand that they are human and make mistakes. Doctors - even good ones - are notorious for thinking they are smarter than official guidelines and drug warnings. See this article for more on glucophage (metformin). They point out in this study that university doctors gave improper treatment in a very substantial number of cases.
I trust my doctor very much, and I also double-check everything he does regarding my treatment. I question him about alternatives whenever he seems at odds with what I have read. Being careful doesn't mean you don't trust your doc - it just means that you are careful. ;-) My CHF doc genuinely doesn't mind.
I am not asking you to stop taking the drug, or even to bring it up to your doctors. I don't know your situation, and your doctors and you do. However, for others who take glucophage, I thought I'd point out that university doctors were making a lot of mistakes in this study. :-) Jon.
Lori K, June 10, 2002 - Hi everyone, I just wanted to share information given to me by my CHF doc on Friday. He said that 70% of CM patients have sleep apnea. He feels strongly that sleep apnea causes CM. He is involved in a trial which hopefully will answer the relationship questions between CM and apnea. He was trained at Hopkins and is extremely well-read. I have had some symptoms of apnea recently and am getting tested this week. He also said that apnea-induced CM, if properly treated, has a much better outcome than from most other causes. Anyhow, I thought that was interesting. Take care all, Lori. firstname.lastname@example.org
Tom S' June 10 reply to Joseph P's June 8, 2002 - Hi, My druthers would be having the big one at one of the Nevada ranches. email@example.com
Tracey, June 11, 2002 - Hi everyone, I had my echo today and it showed a deteroriation for the first time in 2 years (since diagnosis). It is not a huge slide, down from 50% to 45%. He didn't consider the number as important as the slight change in the wall movement, which was a bit weaker than before. So he brought up Coreg, which of course I'll take again, but I so dread the side effects I had when taking it initially.
We've also scheduled a MUGA first to determine if Coreg will actually be necessary. He stated that there are variations that could have caused today's reading so he wants to make sure. I know that I should try to base it on the way I've been feeling, which has for the most part been pretty good, but it's really hit me mentally. I had moved mentally from "Okay, I have this" to "It looks like I'll be one of the ones who stay the same" to now possibly one to worsen. We are to leave on our first real vacation next week. I never thought the results would be any different than they've been and I'm trying so hard not to let the results affect me mentally for this trip for my husband's sake. As always, he's being so supportive and saying that you can't base anything on this one echo and that it's really not much of a change. I agree, it's just hard for me right now. I'll move past it.
I also mentioned to the doctor that I thought my ankles had been swelling a bit by the end of the day. He said that if anyone sits all day, regardless of a heart problem, they will swell a bit. I think he said that because he saw I was about to go over the edge right in front of his eyes, but who knows.
Has anyone had a MUGA? I read the details on Jon's tests page, but any personal experience would be very helpful. Thanks so much. Sorry for complaining, I realize that I should be very thankful to be where I am. It's just hard, as you all know, Tracey. firstname.lastname@example.org
Jon's June 11 reply to Tracey's June 11, 2002 - Hi Tracey, I am in a tearing big hurry today so please excuse me if I seem abrupt - I don't mean to be rude! Your EF really may be the same. I am not putting you on. Interpreting echo results is a terribly subjective process (see the article at the bottom of the echo page for details). My own CHF doc, who has run a heart transplant program as well, allows a plus or minus of 8% for echo results, which means that your EF is the same, as far as echo can be trusted. This is another reason why you should not allow test resutls to assume great importance in your mind. The MUGA is more accurate but also has serious limitations.
I had a MUGA a long time ago. What I remember is the discomfort of holding one arm above my head for many minutes; and the waiting, which seemed to go on forever.
Please realize that when I say not to take tests so seriously, I am not downplaying your anxiety, which is a real thing that you must deal with. However, hopefully, you can bring your mind around to the realization that echo numbers just aren't that critical. I have an EF of 40%, down from almost 50% by echo, but I actually feel better than when the echo said 50%. Feeling good is good enough for me. <g>
I don't say that tests are less important than how you feel to make anyone feel better. I say it because it is established fact. CHF doctors know that patients who are feeling pretty good do pretty well, regardless of test results. I hope you realize the wide range of accuracy for echos, and put aside the anxiety not because I tell you to, but because right now you seem to be doing pretty well physically. :-)
Your doc is right. Humans are not designed to sit all day. Gravity and movement have certain effects on our bodies. Without the movement, you can get swollen ankles from sitting a lot, even without a heart problem. Jon.
Joseph P's June 11 reply to Tom S' June 10, 2002 - Hey, I didn't know you were a ranch hand . Yippie ki yo! Joe. email@example.com
Ruthie A's June 11 reply to Darlene's June 10, 2002 - Hi Darlene and Diane, I have diabetes as well as diastolic dysfunction, arthritis, etc. My PCP prescribed metformin, and although I questioned him and my cardiologist, I agreed to try it since they both said I would have no problems with it.
The regular metformin caused too many uncomfortable adverse reactions, so we switched to Glucophage XR. I responded fairly well to it once I passed the adjustment phase, but when my doc increased the dose I began experiencing extraordinarily severe stomach pains. I stopped the medication and saw my PCP 2 weeks later. In the meantime, the article came out about the inappropriate prescription of metformin. At my appointment I asked the doc about the article, mentioning that maybe God was looking out for me since I could not tolerate the med anyway. My doc said that there was no evidence that lactic acidosis was a risk. In fact, he said, there had never been an incident of it in the United States, but that means there have been problems in other parts of the world.
I am glad I am moving. It makes it easier to change doctors! No way would I keep that one. Just because there are no incidents of lactic acidosis in America does not mean that it won't happen to me, or you. Please be careful, Ruthie A. firstname.lastname@example.org
Jon's June 11 reply to Ruthie A's June 11, 2002 - Hi Ruthie, First to everyone, I hope you realize that the reason metformin (glucophage) is not recommended for CHFers is because it causes fluid retention! It is not just lactic acidosis risk that affects you if you have heart failure and take metformin! I just want to make sure everyone knows this.
The Virtual Hospital report states, "It is prudent to contraindicate the use of metformin in all patients with CHF who require pharmacologic treatment." The drug can skew your fluid volume, causing you to retain fluid, and we all know the end of that story as we head to the Emergency Room. The FDA itself says, "One concern with oral antidiabetic drugs - including metformin - is the potential risk of cardiovascular death." Lactic acidosis is not the only issue for us.
Ruthie, I think your doctor is dead wrong. The reports I have read state there have been no reports of lactic acidosis here "when the drug was used as directed" or when the drug " was prescribed as in clinical trials" or "in patients correctly prescribed metformin." The whole point of the article posted at Heartbytes and the FDA warning was that doctors are not using the drug as directed and as it was used in clinical trials! That is the problem.
There have been 65 reports in the USA to the FDA of lactic acidosis associated with metformin therapy. That comes from the Virtual Hospital. The official FDA estimate is that lactic acidosis occurs in 5 out of every 100,000 people who use metformin for one year or more.. A similar drug Phenformin was taken off the USA market in 1977 due to these same problems, but at higher rates. That is the reason metformin took so long to be FDA approved. Both drugs were developed in 1957 but due to the problems with phenfomin, metformin was not approved until 1994.
The crux of the whole situation is the same one we run into again and again as heart failure patients - doctors make mistakes and we have to be on our toes to catch those mistakes before they damage our lives. It is a proven fact that doctors do not follow official guidelines for heart failure treatment, despite the also proven fact that doing so saves lives. So be educated and alert, everyone!
Ruthie, I sure am glad you're moving on to another doctor although I am sorry you have to move. That's the pits. Ruthie, I know you educate yourself and pay attention to heart news, and that's one reason why I used your post to make a point - you know it's not meant to criticize you. ;-)
I probably seem like a ranting maniac on this subject but I am trying to counter a tendency I see day in and day out in people to just trust a doctor, and not to make sure he is on the ball. Doctors are people, and we all know that people tend to say that they know more than they really know, and often they act on that supposed knowledge without making absolutely sure it's accurate. In our cases, a doctor doing so can hurt us terribly, sometimes for the rest of our lives. So I do tend to rant on the subject of self-education and being alert to our treatments. I worry that someone will suffer at the hands of a proud, ignorant, hasty, or holier-than-thou doctor.
Finally, if you want to check up on metformin and lactic acidosis, go to Medline and type in this exact string into the search: "lactic acidosis" metformin incidence
Nancy S' June 11 reply to Jon's June 6, 2002 - Hi, I've found this Url for changes to the guidelines for prevention of endocarditis. I think this is what you were looking for. email@example.com
Tracey C's June 11 reply to Jon's June 11, 2002 - Hi Jon, Thank you. I'm really trying hard not to let it mean anything and in the course of letting panic and anxiety set in since yesterday I've thrown myself into a tachy beat. I will wait for the MUGA results and attempt to disregard this last reading as meaning anything. What do you mean when you say the MUGA has limitations? Thanks for the lecture, I needed it. ;-) firstname.lastname@example.org
Jon's June 11 reply to Tracey C's June 11, 2002 - Hi Tracey, All tests have limitations. This is something a lot of people do not want to hear because they want a handle on their illness that is absolute. Guess what? There is no such handle. Trying to make any given test a way to get control - a definite "take" - on your illness just isn't valid.
You need to concentrate on life style changes, positive attitude, meds compliance - the real "handles" for improving or maintaining yourself throughout your illness. One reason there are so many ways to test heart function (SPECT, MUGA, PET, CT, echo, cath etc,...) is because none of these tests reliably measure all aspects of heart function. All of them have either drawbacks or limitations, or both. If you understand that, you start to lose the sense of fear that one "bad" test result brings.
Tests are always limited by operator skill, software (programmer) and hardware quality, skill of the operator, and skill of the person intrepreting the results. Many times, the physical characteristics of the patient also make errors more likely. In MUGA, numbers are calculated using formulas rather than taking many of the measurements directly as in a cath. In a cath, you stick a tube into the actual blood flow and measure pressure directly. In MUGA and echo you rely on pictures generated by noninvasive methods, so of course there is always room for error. The trick is to know where the errors occur, correct for them as well as possible, and make them reproducible when possible. ;-) Even though usually machine-calculated in MUGA, the accuracy of the result depends on the accuracy of all measurements that are used to calculate it. All these things add up to limitations.
MUGA may be somewhat limited in its ability to define certain aspects of diastolic dysfunction, ventricular wall thickness, and corrections may have to be made for gating delays. I am no expert and understand that many test limitations are beyond my understanding. <g> However, MUGA is excellent for defining resting EF, and measuring volumes and many flow measurements. MUGA results are less dependent on the interpretive skills of the doctor reading the results, which is a good thing. However, it is far from perfect, as is echo, as are all those other heart tests. ;-)
My own EF dropped 10% recently and it didn't worry me at all. I have seen my EF go from 13% to 50% and all points in between. Sometimes it goes up, sometimes it goes down, but I have been sitting here typing the whole time. I am more concerned about how I feel. Try it - you'll like it. <g> Remember that tests do not indicate how you should feel or how you should live - they just measure certain aspects of bodily function. The human body is incredibly complex and has backup systems on backup systems in many cases. When one function deteriorates, often the body compensates in another way. So don't let test results rule your outlook on life. And always remember that EF varies from hour to hour and day to day! What is down today may be up tomorrow!Jon.
Karen, June 11, 2002 - Hi everyone, I read the board daily but haven't written in awhile. I was diagnosed in the fall of 1998 shortly after my daughter was born. My EF was 15% by cath and has risen to 45% (per the echo last month), which was the same as my echo last year.
Here is my question. I have been on SSD since spring of 1999. Today I got a letter from them instructing me to fill out the disability update report. I am so worried because even though my EF is up, I am still tired most of the time and don't seem to be able to do anything for a long period of time without feeling tired. This form letter says, "Describe your health now as compared to June 2000: Better, Same, or Worse." I know from other posts that very little weight should be given to the EF but what is better? My meds are working, I am alive but I sure don't have the energy that other people my age (42) have.
Anyway, can anyone give me any advice on SSD reviews? I got approved so fast in the initial review, I thought, "Wow! I really am sick." I know in my heart that there is no way I could work. Who would put up with all the breaks I would need due to fatigue, trips to the bathroom from Lasix, or my need to lie down because it's easier to breathe if I stretch out? The stress of working and taking care of my 2 small kids would bring my SOB right back into the picture. Sorry this is so long, but this is the one place I know people understand what it's like to feel this way. Thanks everyone. Karezybear@aol.com
Mel G's June 11 reply to Tracey's June 11, 2002 - Hi Tracey, I'm so sorry to hear that you're having a hard time. Don't worry about "complaining." I don't think you're complaining, just worried. It's very difficult to feel one way and be told that your body is actually meant to be feeling something different. I was like a yo-yo with one test telling me I should be very ill indeed and then another saying oh, not so bad, lots of improvement, and then a further one showing another detrimental aspect (no anterior wall motion whatsoever). Now I listen to the test results very carefully, but say to myself "Well, I guess you can still feel this way or that, and have those results" despite whatever the test results might indicate. Jon is absolutely right when he comments that how you feel, regardless of results, is critical. Don't forget too, that you will have good days and bad days, and no single day determines how your CHF is going.
As to the MUGA, I've had 5 in the last 7 months! At the last one the nurse said, "Oh, it's you again. Well, by now you know enough to run this machine on your own." She was just joking though - you need the nurse. <g> I don't think it's very common to have as many as I've had, but there are things about my heart they can't seem to really figure out yet.
I've never had any problem or any worry about having a MUGA, and always look at it as a nice rest. It takes me 3 hours to get to the hospital from where I live so I'm generally pretty pooped when I get there. You'll probably have just a resting MUGA. After they inject you with the radioactive substance they ask you to just rest lying down for about 20 minutes. At our hospital they provide magazines, but I usually bring my book or just shut my eyes for awhile. Then the best part, which is tea (or milk), cheese, and crackers. They give you a very high fat snack even when you're on a low-fat cardiac diet to help rid your body of the nuclear injection. The particles (as far as I understand it) have already attached themselves to the blood cells so they can look with their gamma camera.
So you have a nice snack, wait another few minutes while they ready the machine and finish up with the last patient. When they take you over to the machine they usually offer you the "lady's room" because you're now going to be strapped in for 30 or 40 minutes and won't be able to get up to pee. They've mentioned to me as well that if bowels are very full they can get in the way of the pictures at some angles, but I don't think that's really worth worrying about.
You might see if there is a clock on the wall that you can look at from the bed, or ask the nurse to let you know how the time is going while you're on the table. The MUGA table is very skinny and will just hold your body, but not your arms. The one they use here is very comfortable and the nurses make it particularly cosy with a pillow under the knees, two pillows placed properly under the head and neck, and a soft blanket over all. They may fit you up with ECG leads and then tuck you in. As I recall, the room is normally quite cool so the blanket feels good. The arms over your head part is the only bit that can be uncomfortable because most of us don't have very great blood flow in that position. The nurses here ask whether you want some soft fabric strapping (closed with velcro) to help keep your arms up. I usually accept because then you can totally relax and the strapping keeps your arms in place. My technique is then to just shut my eyes and try to doze while the machine does its thing.
It's a great big gamma camera, which moves around your body in increments of a few inches at a time for example, from right to left, covering you from about nose to hip, very, very close to your skin. It can look a little daunting because it's so big and seems to move by itself. You might wonder whether it could actually crush you or something, but it won't! The camera pictures are taken based upon the exact timing of your heart beat, which they get from the ECG leads, which is kind of cool. The nurses usually buzz around between you and other patients while the camera is doing its thing but you're best off not to talk or move so that your cardiac doc will have the best pictures possible to look at.
Once the camera is done, you're unplugged from the ECG and can move around and get dressed again. They usually ask me to wait for 10 minutes until the nuclear medicine doc can look at the pictures and make sure there isn't a problem with the images - like they do after an x-ray - and then you're free to go. The nuclear medicine doc will study the images and then send a report on to your cardio doc. The nurses will not say anything at all about how your heart looks.
I think you'll be fine. Just have a nice restful time and try not to stress out about it. The pictures will show what the pictures will show, and the results are usually available within a week or so - whenever you've made an appointment to follow up. I hope you will have a really nice vacation with your hubby, and many more to come. email@example.com
Carol O's June 11 reply to Tracey's June 11, 2002 - Hi Tracey, Jon is completely right when he told you that the test numbers are not as important as how you feel. My own CHF doctor, who is the director of the Heart Failure Clinic at Loyola Hospital, tells me that test numbers are only numbers, and it is much more important to know how you feel. I have had an EF of 15% for 4 years now, and if I believed in these test numbers then I would probably be upset all the time.
I also get a MUGA once a year, and there is no pain with this test, so you should not worry about it. You will need to be injected in both arms, but I am used to blood tests so that is not a problem. The MUGA will also give you an EF number, but since your EF is already a high number you should not have a concern about the new EF. Good luck with the MUGA, Carol O, CHF, 15% EF. firstname.lastname@example.org
Donna K, June 12, 2002 - Hello, I'm the wife of a 34 year old CHFer suffer. Our problem is water blisters popping up on his feet and when they pop they get very sore. His doctor always seems to blow us off and tells us it's too much sodium and fluid intake. He is supposed to walk a mile a day but can't do so. Does anyone have any suggestions? Does this happen to anyone else? email@example.com
Ruthie A's June 12 reply to Jon's June 11, 2002 - Hi Jon, Thanks for the compliments. It was nice of you to notice. ;-) Don't worry about using me or my post as a guinea pig. I'm glad to help.
I have received the most wonderful news. About 6 months ago I discovered the manufacturer of my diuretic was no longer producing it and was considering making that decision permanent. I was devastated because I am allergic to sulfa and my diuretic - Edecrin - is the only diuretic available that is not sulfa-based. However, just today I talked with a representative of the company, who told me they had received so many complaints about stopping production that they have decided to make Edecrin available again. What an answer to prayer! I didn't know what I was going to do once my private stache at my pharmacy ran out. Now I can breathe a little easier (sorry, I couldn't resist that pun!) knowing my medication will be there when I need it, Ruthie A. firstname.lastname@example.org
Jon, June 12, 2002 - Hi everyone, I have gotten everything done now for the non-profit corporation CHFpatients.com Inc., except the tax exemption and we are working on that application this week. I want to thank everyone who sent me a birthday gift. All that money went directly into this venture, designed to keep the site going long-term. Whether it succeeds or not is another matter, of course, but at least the wheels are now in motion.
I absolutely want to say that without the generosity of you all - and all the best wishes and kind words from those unable to give materially - I'd have folded it up by now. I really would. You guys are simply the best. I thank you all. :-)
God really does provide. I wanted to do this right to protect me and my family from liability as well as giving me a real shot at grants to fund the site, so I chose a well-known corporate attorney in a neighboring city. I got to talk with him instead of an associate and that was a shocker to start with. It turns out that he has heart problems and goes to the same cardiology practice I do. He liked what we do here and gave me a huge break on legal fees! So I place my trust in Christ Jesus and start plugging numbers into the tax exemption application tomorrow night. <g>
The following pages on my site have been updated:
Janet, June 12, 2002 - Hi, This may have come up before but if it has, I missed it. Does anyone have these feelings I can't describe any better than little "head shocks." They don't quite make me dizzy, but just on the verge of it. It happens when I change position or just move my head slightly. I've had them before and they go away, but they always come back eventually. Any theories? Thanks, Janet S. email@example.com
Tom S' June 12 reply to Karen's June 11, 2002 - Hi, Don't let the review process throw you. I have been through it and made it 3 times and have been nervous as a cat in a pit bull kennel. Even my wife told me to be cool and I still got nervous.
Anyway, it is not your place to indicate to the disability folks what your EF is. If they want that or any other purely medical information, they can get it from your doctor, which they may or may not do. I don't think they ever contacted my doctor because at one time I know my EF was over 30%. Now it's back to between 10 and 15% so I would have been back knocking at their door if they had terminated me on the first or even second review.
If you feel about the same or worse then say so. Don't spare the horses on stating just how bad you feel. Include things like you can only walk X number of feet without having to sit down and rest, and yes, that perhaps you might not even be able to engage in sex because of your condition. At this point you can't be shy.
Good luck and try not to be too nervous about the process. Be honest, but above all be very frank about just how rotten you feel. firstname.lastname@example.org
Tracey C, June 12, 2002 - Hi, Thanks to all who wrote me and posted. I do appreciate it and again feel as though I have nothing to complain about compared to others here. I tried the thinking positive and it's almost worked. I just received a hard copy of my echo and discovered indeed many more areas of my heart are now hypokenetic, moderately so, and move abnormally, including the right ventricle which was unaffected previously. Fortunately there has been no size increase overall. Panic set right in but I realized there's nothing I can do about it right now. The doc thinks I may have a recurrence of myocarditis but there's nothing we can do about that either.
I won't start Coreg prior to my vacation because I remember the side effects from taking it prevously, so I'll just forget about it for now and worry about it later. For me that's a huge step towards mental management. Thanks to all for the help. My husband will appreciate it. :-) God bless, Tracey. email@example.com
Craig B, June 12, 2002 - Hi folks, Lately I have been really "aware" of my heart. Does anyone have this feeling, or know what I mean? There is no pain and it doesn't hurt. It's not palpitations or missed beats, just, I seem to constantly be aware of it beating, like when you have a mossie bite on your arm, you know it's there. My last specialist visit was good, with EF up from 18 to 30%, and general improvement all round. I don't get my next specialist visit for a month. Any answers or clues would be great. firstname.lastname@example.org
Karen F's June 12 reply to Karen's June 11, 2002 - Hi Karen, I just went through SSD myself for the first time (my application interview was in March) and I was notified at the end of May that my first check will arrive mid-July. I think that is rather fast from the stories I have heard. I have an Internet friend who is a retired doctor who used to review SSD claims before he retired. The advice he gave me - and I think it would also apply in your review situation - is not to spare anything. Tell them every reason why your life is restricted: bending, lifting, napping, having to have your feet constantly propped up throughout the day, I even told them that my ACE inhibitor gives me a chronic hacking cough and the doctor does not want to change my medication because he thinks the benefits of the med outweigh the annoyance of the cough. However, it is very distracting to others who need to be around me or when I need to speak on the phone to others.
The state of Pennsylvania sends every applicant a 13-page questionnaire, 90% of which are essay questions. When I finished, I had 27 pages to turn in. My friend told me that the initial application, or in your case review form, is used to gauge how much of a "problem" you are going to be. If you are informed about your condition and thorough in your answers, they are likely to assume you will appeal and end up fighting them if they turn you down. If you give very brief answers and hold back on explaining what you can't do, there is more of an assumption that you will just give up because you are not as invested in the claim as shown by your lack of interest in supplying thorough answers. If they think you will give up, they will deny. It is your job to convince them that you will be a thorn in their side. This strategy worked for me. My caseworker admitted as much. Good luck. email@example.com
Jon, June 13, 2002 - Hi everyone, My mother-in-law had a heart atack followed by emergency angioplasty last night. Since she called here at 2:00 AM not knowing what was going on when she actually had the heart attack, and I called 911 for her, I am sort of tired. I may not get to posts until tomorrow. Jon.
Peggy Carter, June 14, 2002 - Hi, This may have come up before but if it did I missed it. I have not posted in a long time. I have been on Coreg for 5 years and I have been doing very well, but the last few months I have been having a lot of bad dizziness.The last few weeks I have been having chest pains. This is just like it was before I was on Coreg. I take 25mg twice daily. Has this happened to any of you? Does the Coreg quit working? Yes, I do have a appointment with my doctor; I just would like to know if I am the only one. God bless, Peggy C. firstname.lastname@example.org
Cindy, June 14, 2002 - Hi, My dear friend asked me to post a question about tanning beds. Are they safe for persons with CHF? My friend has CHF and her heart works at 25%. She is diabetic and has mitral and aortic insufficiency but she is doing great and is as normal as me. The sun does not cause her problems, except excessive sweating and nose running. She had asked the tanning bed operators and they said no tanning bed with CHF. She has not been warned to stay out of the sun and maintains a medium sized garden and lovely flower beds. What do you think? Are tanning beds okay? email@example.com
Jon's June 14 reply to Cindy's June 14, 2002 - Hi Cindy, No, they are probably not okay. I doubt that they affect her heart failure but anyone taking a loop diuretic may become more sensitive to sunlight than they realize and it can cause them problems. She should get the full prescribing information for each drug she takes and read them to see warnings about avoiding sunlight, and then she should talk to her heart failure specialist about it. In the meantime, I would suggest she avoid much sunlight and avoid tanning beds entirely. Jon.
Cindy, June 14, 2002 - Hi, I am not finding much pertinent info on atacand Hct. Is anyone taking it and does it help with breathing and exercise intolerance? Thanks muchly, Cindy. firstname.lastname@example.org
Katherine H, June 14, 2002 - Hi, For those of you considering having a bi-ventricular pacing device implanted, here is a web site that is a visual of the implantation of an InSync Cardiac Resynchronication device: http://my.webmd.com/special_event_article/article/4030.101?z=4030_0461_2004_00_01. Just click on each menu page. It is very helpful at showing why the device can be so helpful for people who qualify. email@example.com
Fred H, June 15, 2002 - Hi, I'm a CHFer who has had 3 MIs, with CM, CAD. I am on multiple meds. From time to time I experience extreme pain in my ear, not inside the ear, but the ear itself. A nurse friend of mine thinks it is angina. I mentioned it to my cardiologist and he was noncommital. Has anyone experienced this before? firstname.lastname@example.org
Joe W, June 15, 2002 - Hi, Where can I get info on how to get Dr. Silver's book? I have seen the info here once but can't find it now. Also, I stumbled on the page in which he answered questions but can't find that page also. Can someone direct me please? Thanks and good luck to all. email@example.com
Jon's June 15 reply to Joe W's June 15, 2002 - Hi Joe, You can get Marc's book through Amazon dot com here. You can see the archived questions with answers at www.chfpatients.com/ms/ms_archives.htm. If anyone can't fid a page they need, feel free to ask here and I will try to give the right one. I know the site has gotten very large. <g> The site search engine helps a lot but sometimes a certain page can just be very elusive. Jon.
Jim, June 15, 2002 - Hi, I want to share some info on the crisis in Social Security claims. I read this in my local paper. It was written by Leigh Strope, AP writer. The backlog for disability claims is reaching crisis levels. SSA's repeated attempts to overhaul the system have failed. "Decisions on claims are taking longer ... fewer decisions are being made" said Robert E. Robertson from the General Accounting Office. It can take 1,150 days to process a claim. The applications remain idle half that time because of a huge backlog. There were 200,000 cases backlogged in 2001 at the adminstrative judge level (mine is one of those).
The biggest shocker I read was the fairness and consistency for decisions among states. For example, "... 66% of claims in the State of Delaware were approved while 27% of Tennessee were." Tennessee is my home state. I didn't know that where you lived had a bearing on your chances of approval. I just wanted to share this. It might shed some light as to why we are kept waiting so long. firstname.lastname@example.org
Jon's note: See this page for more
Ben B's June 15 reply to Jim's June 15, 2002 - Hi, I want to point out what may be an unpopular point, but I will make it anyway. It is always easiest to blame the bureaucracy for everything and in most cases it is their fault. Yes, the SSA is screwed up, but a big part of the problem of disability is that a lot of people make false claims. I know it is true, including people with heart problems. I think it is especially true with regards to SSI. I've seen several television programs with regard to fraud and SSI. I know most people are honest about this or maybe like me - sometimes a little unsure one way or the other - but there is a minority of people who are really capable of doing at least some kind of work and continue to take the money and they make it extremely difficult for others, like some real hard cases here on this forum and maybe the reason you are waiting so long, to get their fair share. email@example.com
Tom E, June 15, 2002 - Hi, I had my first attack of edema since first being diagnosed with CHF in 1999. It got bad enough that I ended back in the hospital to get help. I was on 2mg Bumex at home. To make a long story short, I went in at 240 lbs and came out at 227. The swelling has returned to my feet. I had to get off Bumex. They also had me on zaroxolyn on Mondays and Fridays. This knocked my blood pressure down to 80/60 and I don't operate that low.
I saw the cardiologist Thursday and he put me on Lasix, which seems to be working a little better. Do many of you go through this? I really was unaware you could have relapses of CHF - duh? Now I have applied for Disability because I just can't work anymore. Thanks for your time, Tom. TomE44@accesstoledo.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.