Roz S 3-16 new device mentioned in Wall Street Journal
Jon's 3-16 reply to Roz S 3-16 bi-ventricular pacing
Pam 3-16 I hope my doc knows what he's doing
Carolyn 3-16 I just don't know
Jon's 3-16 reply to Carolyn's 3-16 you need treatment soon
Jim 3-16 my heart problems scare me
Amy N 3-16 intro, glad to find you!
Tim B's 3-16 reply to Jana B's 3-15 thx, prayer request & more
Joe S 3-16 Reader's Digest article
Tim B's 3-16 reply to Jim's 3-16 drop me a line
Phyllis A's 3-16 reply to Amy's 3-16 welcome to Jon's Place
Jon's 3-16 reply to Jim's 3-16 welcome to Jon's Place
Thelma C's 3-17 reply to Jim's 3-16 welcome, I also had Tetralogy of Fallot
Dee L 3-17 questions about taking zaroxolyn
Jon's 3-17 reply to Dee L's 3-17 zaroxolyn, meds, doctors
Ginger 3-17 questions about water intake & to Tim
Jon's 3-17 reply to Ginger's 3-17 water intake & faith
Judy Z 3-17 worried that no cause for my CHF is seen & more
Jon's 3-17 reply to Judy Z's 3-17 not unusual, focus on treatment
Joe S' 3-17 reply to Jim's 3-16 restricting activity & more
Diane P 3-17 CHF is really getting me down
Gatha E 3-17 mailing list paid off
Tim B 3-17 bad day, lots of meds & more
Jon's 3-17 reply to Tim B's 3-17 only one way to be sure they are all needed
Rick M's 3-17 reply to Jim's 3-16 living in Lent, wives & more
Rieale's 3-17 reply to Ginger's 3-17 diets, CHF & faith
Wanda F 3-17 new device questions
Gloria 3-17 intro & some questions
Jon 3-17 some info on that device
Virginia P 3-17 swollen wrists - lumps - questions
Ginger's 3-19 reply to Rieale's 3-17 thanks, faith & more
Judy Z's 3-19 reply to Tim B's 3-17 also to Jon & Gloria
Harriet P 3-19 update, test results & more
Christine 3-19 update, mailing list info & more
Charlene 3-19 how do I make it through Coreg start-up? & more
Jon's 3-19 reply to Charlene's 3-19 finding a CHF specialist
Dan 3-19 intro, exercise question
Lori P's 3-19 reply to Charlene's 3-19 Coreg may be a good experience
Jan S 3-19 SSD & work questions
Karen K's 3-19 reply to Jan S' 3-19 SSD & work
Dave K's 3-19 reply to Jan S' 3-19 SSD & work
Billie Jo's 3-20 reply to Carolyn's 3-16 please see a doctor right away
Ginger's 3-20 reply to Charlene's 3-19 possibilities for caregiving help
Patricia 3-20 prayer request & more
Billie Jo 3-20 update, what do I ask the doctor?
Sherrell G 3-20 update, tests coming up, prayer request
Brian G's 3-21 reply to Lori P's 3-19 Coreg & feeling good
Diane P 3-21 heart sounds, physicals & more
Jon's 3-21 reply to Diane P's 3-21 heart sounds info
Luc D's 3-21 reply to Amy N's 3-16 supporting one another
Michelle 3-21 how do I cope with weeping legs? & more
Mary Ellen 3-21 intro & more
Donna Z 3-21 how do I start a support group? & more
Laurie 3-21 seek postpartum cardiomyopathy help
Leslie M 3-21 seek prescription drugs purchasing advice
Bill D's 3-22 reply to Brian G's 3-21 Coreg dose, effects & more
Jon 3-22 your privacy on the Web
Virginia P 3-22 licorice should be avoided
Tim B 3-22 all those meds
Ginger 3-23 Vioxx questions & more
Jon's 3-23 reply to Ginger's 3-23 NSAIDs & lower back pain
Billie Jo's 3-23 reply to Laurie's 3-21 coping with illness & young children & more
Debbie's 3-23 reply to Laurie's 3-21 my sister also has this, alternative questions
Jack's 3-23 reply to Debbie's 3-23 stick with real medicine
Jon's 3-23 reply to Debbie's 3-23 even if it pains me, I agree with Jack <g>
Barbara's 3-23 reply to Bill D's 3-22 using up your Coreg
Jamie S' 3-23 reply to Debbie's 3-23 an unmentioned benefit
Mary Ellen 3-23 salt cravings & CoQ10 questions
Bill D's 3-23 reply to Leslie M's 3-21 bringing it back from Mexico
Brian G's 3-23 reply to Bill D's 3-22 thx for the encouragement
Sherrell G 3-24 cath, update
Ruthie A's 3-24 reply to Mary Ellen's 3-23 cravings, diet, thirst & more
Jon 3-24 page updates, need help catching booboos
Sharon M 3-24 update, CAD questions, EECP & more
Jon's 3-24 reply to Sharon M's 3-24 CAD, EECP & more
Joe S' 3-24 reply to Jack's 3-23 chiropractors & blood pressure
Cindy M's 3-24 reply to Debbie's 3-23 massage may make her feel better
Karen E's 3-24 reply to Mary Ellen's 3-23 CoQ10 experience
Billie Jo's 3-25 reply to Mary Ellen's 3-23 CoQ10, sodium & more
Billie Jo's 3-25 reply to Sharon M's 3-24 love those cats
Jon's 3-25 reply to Billie Jo's 3-25 cats and dogs
Sally 3-25 less expensive CoQ10
Virginia P 3-25 update, prayer request, licorice warning
Dick T's 3-25 reply to Mary Ellen's 3-23 sodium, CoQ10 & more
Mary Ellen's 3-25 reply to Ruthie A's 3-24 cravings for salt, fluids & more
Mary Ellen's 3-25 reply to Karen E's 3-24 thanks, will check into CoQ10
Mary Ellen's 3-25 reply to Billie Jo's 3-25 thanks, will check into CoQ10
Mary Ellen's 3-25 reply to Dick T's 3-25 thanks, will check into CoQ10
Donna 3-25 seek someone in similar situation
Judy M's 3-25 reply to Billie Jo's 3-25 low sodium tips & more
Robin Lynn's 3-25 reply to Ginger's 3-23 Vioxx experience
Patricia's 3-25 reply to Ginger's 3-23 Vioxx experience
Pat D's 3-26 reply to Mary Ellen's 3-23 CoQ10 in different forms
Joe S 3-26 sodium in antacid question
Jeanette 3-26 CT scan update & more
Robin Lynn 3-26 addition to my Vioxx post
Sharon M's 3-26 reply to Jon's 3-24 cats, EECP, Vioxx & more
Jon's 3-26 reply to Sharon M's 3-26 cats & dogs, Vioxx & more
Linda Grant 3-27 infections & CHF questions
Jon's 3-27 reply to Linda Grant's 3-27 infections & CHF
Theresa 3-27 seek trial info
Jon's 3-27 reply to Theresa's 3-27 try these sources
Janet M 3-27 sick & tired of being sick & tired
Sandi M 3-27 cramps & worse, update, e-mail stripping
Jon's 3-27 reply to Sandi M's 3-27 quinine water question, e-mail stripping
Bill D's 3-27 reply to Janet M's 3-27 CHF info & more
Janet 3-28 seek others with rheumatic heart disease
Sara's 3-28 reply to Ginger's 3-23 Vioxx experience
Jeanne 3-28 questions about pain & more
Sandi M's 3-28 reply to Jon's 3-27 quinine water's taste
Roz' 3-28 reply to Jon's 3-27 quinine pills maybe better choice?
Jennie's 3-28 reply to Jon's 3-27 quinine pill experience
Joe S' 3-29 reply to Janet's 3-28 rheumatic heart disease experience
Elaine 3-29 SSD/homemaker questions
Xiaojing 3-29 seek CHF cost per patient information
Jon's 3-29 reply to Xiaojing's 3-29 CHF cost info
Cindy M's 3-30 reply to Elaine's 3-29 SSD & full time mothers
Aubrey M 3-30 intro, supplements questions
Roz' 3-30 reply to Xiaojing's 3-29 narrow research area, maybe?
Lori P 3-31 iron supplements info & more
Joe S' 3-31 reply to Aubrey M's 3-30 diet is important & more
Billie Jo 3-31 stomach problems & meds questions
Jeanette's 3-31 reply to Aubrey M's 3-30 you're in the right place
Roz S, March 16, 2000 - Dear Jon, That eminent medical source <g>, the Wall Street Journal, page one, column one, (March 15, 2000) had an interesting report on early clinical trials of a device I had not yet seen mentioned. The new device electronically synchronizes those whose ventricles are out-of-sync, that subset of patients with electrical conductivity problems. It's too early to get excited of course, but appears most promising; promising enough for the stock market players to place some big bets on it. The device is small, about the size of a quarter and is condsidered a minor procedure (aren't they all?). Best wishes to you and all the newbies, Roz. Sanderson@aol.com
Jon's March 16 reply to Roz S' March 16, 2000 - Hi Roz, While I don't know the name of the specific device you speak of, the process is called bi-ventricular pacing. There are at least 2 ongoing trials of such implanted devices about to end and we should have their results soon.
Most pacemakers only send signals to one ventricle and rely on the heart's own internal conduction system to pass that signal on to the other ventricle. Bi-ventricular pacing paces both ventricles directly, making them beat more perfectly "in time." You can read a press release about Guidant's version of this type device here. Other devices in testing also help bring the upper heart chambers - the atria (atriums) - into the controlled (paced) timing process.
For those who are on my heart info mailing list, you've seen several articles about this, which are still available for download here. I just uploaded a few of those pacing articles as one easy to read file, which you can read here. If the font is too small, just click on your browser's font size button (the A). I'm taking this down in a few days though, since these articles are already available with the other text files for download. You can also read more about pacing for CHF at the Pacemakers page. Jon.
Pam, March 16, 2000 - Hi, Thank you all for the wonderful welcomes and good info. I went back to the doctor today and he took me off the Coreg althoug I had only been on it for 5 days because I developed swelling in my hands, face, feet and arms. He put me on 25mg Metoprolol twice per day. I took the first dose tonight. I asked him if I might need a diuretic and he said no; he wanted to try this first. I hope he knows what he's doing. I'm praying for each of you and I'll be visiting the site often for encouragement. Thank you Jon, for caring enough to make this site available to us all. PammyPanda33@aol.com
Carolyn, March 16, 2000 - Hi, I don't have insurance yet and I've noticed symptoms that worry me a little. I have dry cough but not breathlessness. How would I test myself for breathlessness anyway? The nearest to exhaustion I got was that I went to a retreat recently and slept on the third floor. All that going up and down the 3 flights of stairs made me sleep 11 hours afterward. My ankles and abdomen are swollen constantly. I ought to see the doctor but I worry he will say it's all in my pretty little head. Couldn't it just be hormones? email@example.com
Jon's March 16 reply to Carolyn's March 16, 2000 - Hi Carolyn, In a manner of speaking, it is hormones. Hormones are what most CHF meds stop. ACE inhibitors inhibit certain hormones and beta-blockers block other hormones.
If you have constant edema, you need treatment. The fluid retention means your heart cannot keep up with your body's needs now and it will only get worse. By not getting treatment, you're placing an extra load on your heart and causing further damage over time. CHFers often rationalize symptoms but it's a losing game plan. Get treatment now, please. Jon.
Jim, March 16, 2000 - Hi, I'm 39, with CHF due to congenital heart disease: Tetralogy of Fallot. I had pulmonic valve replacement and a defibrillator added 5 years ago. I seem to be getting worse. I never had any symptoms to speak of until a few years ago. I lead a normal life, I guess. I can still mow the lawn. This winter things slowed a little. It was noticable. I am married with three kids, aged 3, 7 and 11. I'm scared to death. firstname.lastname@example.org
Amy N, March 16, 2000 - Hi everyone! I am a newbie to this site, but I have been reading your messages and am happy knowing I am not alone in this battle with CHF. I was diagnosed with cardiomyopathy in May of 1997 with an EF of 12%. I was led to believe that my days were very limited until I went to a CHF transplant specialist. I was only 29 when I was diagnosed. I am now 31 and doing much better, thanks to a wonderful doctor. My EF was 44% last spring and I hope it is better this year. Transplant is not something I look forward to. It is very uplifting to me to see that others have lived many, many years with heart problems similar to mine. Finding this site was a blessing! Thanks Jon! email@example.com
Tim B's March 16 reply to Jana B's March 15, 2000 - Dear Jana, I thank you for those kind words but I truly must say that for everything I do, God gets all the glory. You know Jana, I have learned over these last 28 years of being sick that as the mortals we are, we like to think that we control our lives but how wrong we are. I've tried doing it my way and it doesn't work that way. We may at times think we are in control of our destiny but when times get tough, who do we call upon? It amazes me at times to listen to people who don't know the Lord the way we do, who are so sure of themselves in what they do and say. All I do when I meet these kinds of people is pray they will see the light. It may take something drastic in their lives to change them, I know it did me.
Jana and all of my friends here, I need your prayers. My days have been getting harder and harder due to the fact that my CHF is getting worse as each day goes on. There are times that I am so miserable all I do is sit and cry. With the diabetes, it seems that everything else has gotten worse. I take 2 shots daily and my feet and legs are not what you would call black but near that color. The neuropathy in my feet and lower legs gets excruciating with numbness and pain. I would appreciate prayers. Thanks. I hope this note finds you well, all of you. God bless you all. Tim. firstname.lastname@example.org
Joe S, March 16, 2000 - Hi, Has anyone seen the article in the April Reader's Digest called "Saving Julie's Heart?" This is one of the most amazing inventions I have ever seen. It is a small device that replaces the heart for a few days or weeks while it heals itself. I think it's worth reading. Joe S. email@example.com
Jon's note: See LVADs for more about these type devices
Tim B's March 16 reply to Jim's March 16, 2000 - Hi Jim, From what I can gather, your valve problems seem to have been taken care of, right? As far as the ICD goes, that is a life saver for you, my friend. Has it ever gone off? If it has, you can thank God for it because without it, at that time and where help might have been 90 seconds or more away, you could very well have died. I wasn't home even a hour from the hospital and mine went off. Since that time it has gone off 7 more times and aborted 13 times. It is a life saver.
Jim, you didn't elaborate on just what you are scared to death about. Of course I know it's heart related, but write back and let us know what it is. It really doesn't matter what you are scared about because there's not a thing wrong with being scared. I think maybe that it may be the down-the-road scared; fear of the unknown. I also think that with your young family and your age, it scares you to maybe think that you won't be there for them. That's all right, we're here to help. I've been there and done that, believe me, and if I can help, I'll be more than happy to do so. However, I have to bring a friend into this in order for it to work. It's not me who is going to help you, I'm just the tool that God can use to help you. So e-mail me and I will talk with you. But let all of us help you because there are a lot of wonderful people here at Jon's Place. God bless you and your young family. Tim Brownie. firstname.lastname@example.org
Phyllis A's March 16 reply to Amy's March 16, 2000 - Hello Amy, Welcome to our group. I was very thankful when I found this site. It was truly a blessing and Jon a Godsend. Again, welcome. email@example.com
Jon's March 16 reply to Jim's March 16, 2000 - Hi Jim, What exactly has slowed down, and how much? Do you get more short of breath? Are you more fatigued? Do you have swelling in your stomach or ankles? Feed us some info and we'll feed you some advice, although it may not always be of the highest quality (especially mine!) <g> We don't always try to tell you things to do, though. Sometimes the best medicine is having someone who'll listen and knows what you mean. Know what I mean? :-) There are a lot of people here who completely understand the fear of getting worse and seeming unable to do anything about it.
There usually are a few things you can do, though. The trick is to figure out what works for you. Remember not to shoot for feeling normal, settle for stopping the slide downhill. Are you on a low sodium diet? Do you take any supplements? How is your financial situation - is Disability in your present or in your future? These are things some people here might be able to help you change for the better - although I doubt anyone's gonna line your pockets! <lol>
I'd say the best thing a CHFer can do to improve their situation is be sure their doctor is a CHF specialist and that he is on the ball. Is your doc a specialist in treating heart failure patients? There's a page about that here And of course, Read The Manual! Hey Bill, you knew that was coming, didn't ya?! Jon.
Thelma's March 17 reply to Jim's March 16, 2000 - Dear Jim, I just had to write and tell you I am also a Tetrology of Fallot (corrected at 7 years of age) and to let you know you've come to the right place! We are all dealing with this uncertain future of ours in remarkable ways, and everyone here has been a tremendous support. I truly understand what you are going through. It is indeed a challenge to have been dealt a bad heart from birth, then to be hit with such a major setback such as CHF just when our lives are beginning to take off. I'm on Lasix, Captopril, Zebeta and baby aspirin, and have found some relief since being diagnosed with CHF this summer. You are lucky to have the ICD already, because that is my next hurdle and I am very worried about the study. Feel free to e-mail if you want to just talk. Thelma. firstname.lastname@example.org
Dee L, March 17, 2000 - Hi Jon, This is the second time my cardiologist has put me on Zaroxolyn and I would like to tell you my reaction to this drug. The first time I was on 5mg and after 4 doses became hypokalemic (even though I was on 40mg of K-Dur twice a day) and was taken off the Zaroxolyn immediately. That was about 4 months ago. Two weeks ago my weight was up 7 pounds and I was put back on Zaroxolyn at a lower dose of 2.5mg once a day for 4 days and then if the weight was down, I was to only take the Zaroxolyn twice a week. I am also on other diurectis (160mg furosemide twice daily and 25mg Aldactone). This time, a week after taking the Zaroxolyn, my cardiac output dropped and I was not able to stand up without being very weak and dizzy. Needless to say, I was taken off the zaroxolyn once again. I feel this turbo charger is what I need to reduce the fluid. I have the best cardiologist one could ever hope for and I also see a CHF specialist at the Heart Center at Columbia Presbyterian in NYC. Do you know of others that had similar experience with Zaroxolyn and why some people cannot tolerate this medicine? I would like to try to take it because it does the job as a turbocharger so quickly. email@example.com
Jon's March 17 reply to Dee L's March 17, 2000 - Hi Dee, People react to different drugs differently. This can be because of their individual response to the drug or because of drug interactions. Diet can also play a part in drug tolerance or intolerance. A lot of people think that drug interactions are easily recognized and compensated for, but that's not true. Sometimes, even what we think are CHF symptoms can be caused by some of the drugs we take or by interactions between them. The more we alter our body chemistry, the more likely it is we'll have a reaction or interaction of some kind. In short, Dee, Zaroxolyn may not be for you at all, or not as long as you are on your current mix of drugs.
The Aldactone you are taking is at a dose that does not act as a diuretic. It is designed to help suppress your levels of angiotensin (ACE), the same thing ACE inhibitors do. Think of Aldactone as an ACE inhibitor turbocharger. Aldactone does have an effect on potassium balance, though. I question whether taking you off zaroxolyn instead of working to adjust your potassium/magnesium balance instead is the right way to go. It's a judgment call. If you squawk to your doctor, he might be willing to have another go at zaroxolyn, being more cautious in dose and blood testing this time. Whenever you start or change dose on a potassium-sparing drug like Aldactone or zaroxolyn, you should have a blood test for electrolytes just before you take the first dose and again after a few doses. When I was on zaroxolyn, I was started at 2.5mg every other day (to go up if needed) and my doctor did a blood test the day before I started taking it, and again after 3 doses. No matter how good the doctor, sometimes you must stay on them to keep everything rolling in your favor. <g> Jon.
Ginger, March 17, 2000 - Hiya's, Ok, no laughing you guys. I know this is gonna sound stupid but here goes: I need to lose 20 lbs so I decided to start the Richard Simmons' food mover plan. Well, it calls for 8 glasses of 8 oz of water a day. I take Zestoretic, which has a diuretic in it. So by drinking all this water, will I just be undoing what the med is supposed to do?
To Tim B, you're amazing. Your faith amazes me and how I wish my faith was that strong. To be as sick as you are and still sit here and reach out to help others like you are doing is truly very special. I am having a lot of problems in the faith department these days, after just losing my sister 6 weeks ago and now waching the very real possibility that I may lose my brother, has really had an effect on me holding onto my faith. Anyhow guys, stay well. Hugs, Ginger. firstname.lastname@example.org
Jon's March 17 reply to Ginger's March 17, 2000 - Hi Ginger, A lot of good diets call for at least this amount of water daily, and usually call for more - at least 96 oz per day. Most healthy people do not drink enough water so drinking the extra actually encourages their body to stop retaining fluid, thus causing the quick loss of at least several pounds of water weight and getting the diet off to a successful "feel." It also encourages better overall health since water is probably the most crucial thing we take into our bodies. Unfortunately, we CHFers aren't healthy and we take drugs that alter the way our bodies work, so the extra water is generally not a good idea for us, diuretic or no diuretic. I suggest you talk to your doctor on this one since it may be okay for you to drink that much water even if it's not okay for all CHFers to do so. Be sure rather than sorry though, please.
What is faith? Isn't it a trust so deep that the appearance of that trust being violated by God does not destroy it? Appearances are often a deceptive thing, aren't they? Don't let appearances destroy the trust God deserves from you. Maybe the question we all have to honestly ask ourselves is whether our faith is in God and His ability to know what He's doing or whether we have placed our faith in a god who makes everything turn out the way we want it to. After all, God let His own Son die in pain and humiliation. Viewed from a human perspective, that makes Him look plain nuts. Viewed in the light of what it accomplished, it's the most elegant solution imaginable for reconciling us to Him. We simply don't know what all the results of any event or action are, and just because something causes us great pain does not make it a "bad" thing. It is said in chaos theory that the beat of a butterfly's wing in China can cause a tornado in Kansas - we just can't follow such a complex series of events. God can.
Another very human reaction to pain is to assume that God caused it. He doesn't cause everything to happen directly. He does allow "bad" things to happen. It's easy and very human to jump to conclusions about the how and why of events. God will strengthen your faith if you let Him. Jesus does not force Himself (faith) on us in this life. It's our call. He told us straight out that in this world we would have tribulation and trouble (John 16:33). He also said He would always be here to take the brunt of our burdens on Himself so we would be able to bear whatever life threw at us (Matthew 11:28). Give Him a chance to carry your burdens, please. Jon.
Judy Z, March 17, 2000 - Hi, I've never posted before but want to thank Jon for making this site and all the folks who contribute to it. I was diagnosed a couple of years ago with CHF. I probably had symptoms of it for quite awhile but had always been diagnosed with something else instead. At age 47, I think the docs considered me a hypochondriac and I guess I did too. Being shy didn't help. "Nothing's wrong? Okay doc, I guess you know best."
Being diagnoised was a fluke. A rheumatologist (I was being checked for mysterious swelling in my hands) was listening to my heart when it put on one of its crazy rhythm sessions. I ended up with an electrophysiologist who was very surprised to discover my CHF. I had echos and a cath and except for getting bigger and weaker, my heart looks great. No blockage, low cholesterol, and low blood pressure. There is a family history of heart disease, but always related to diet and smoking and occuring later in life. I was started on Coreg, Monopril and a mild blood thinner (I can't tolerate aspirin).
I just had a 6 month checkup and my first echo in a year, and everything is worse. My heart is bigger, all chambers are misfunctioning, I have some minor leaking in 3 valves and my EF is 31%. I know that compared to a lot of folks with CHF, I am still in good shape but I am scared that they haven't gotten a handle on the cause. So far they have ruled out amyloidosis and some other rare disorders. I will be getting another stress test to see how my body is handling this. I look pretty good and don't feel awful if I take it easy and eat smart. After the stress test, I will be going to see another specialist.
Has anybody else had unexplained CHF? I have 2 kids in their early twenties whom I had hoped to see married, with grandkids. Plus this is terribly hard on my husband of 28 years. Sorry this is so long, I really don't like to burden people with my problems. You are all in my thoughts and prayers. Jezmund@coredcs.com
Jon's March 17 reply to Judy Z's March 17, 2000 - Hi Judy, I hope others will pop up with their experiences in this department, but my own CHF is also unexplained. As a matter of fact, 40-60% of all CHF is idiopathic, or "cause unknown." Doctors often usually call it a virus when they don't know, even if a heart biopsy shows no antibodies to any virus! Most CHF, with just a few exceptions, is treated the same way so maybe focusing on treatment rather than the cause is the way to go. Jon.
Joe S' March 17 reply to Jim's March 16, 2000 - Hi Jim, Listen to Jon and the others, but about being proud of still being able to mow the lawn - don't! It's been said that we with CHF live in perpetual Lent in what we can do. I have had a bad heart since age five and have had to live a very restricted life style. Hey, it ain't so bad. Running, walking uphill, mowing the lawn and all of that isn't so hard to give up and giving them up doesn't make you any less of a man. If anyone kids me about this, I make a joke out of it by saying I've perfected a way to goldbrick. Yes, I hate to see my wife lift things for me but I do tons more for her and many of them aren't manly things either. Don't let these things get you down. I like to think of ourselves as special people. Think about it. Joe S. email@example.com
Diane P, March 17, 2000 - Hi, I am frustrated and want to screeeam! I am getting tired and more tired. Good days are getting further apart. After going to Shands' and gretting me undehydrated, I am on 5mg Vasotec twice a day, 25mg Aldactone 4 times a day and 40mg Lasix daily. I cannot stay awake, or read or watch tv and follow the trains of thought. My brain is on vacation and walking 50 feet puts me to bed. I haven't got any fluid that I can tell to blame. I am so tired. Any suggestions? firstname.lastname@example.org
Gatha E, March 17, 2000 - Thank you Jon! You cannot know how timely the piece you last e-mailed to the heart info mailing list on "Diabetes Drug May Spur Heart Failure" medical news was to me. My internist started me on 8mg Avandia March 3. After about 4 days of taking it, my chest started getting tight; not real squeezing like angina but a real tight sensation. Then your article arrived and I immediately called the doctor and told him what was happening and about your article. I was told to immediately quit taking it. When the drug got out of my body, my chest went back to feeling normal. It did not lower my sugar readings probably because of the reaction that I was having to it. Everyone be careful out there on some of these drugs we are given. See Jon, all your hard work for us does pay off. Thanks! email@example.com
Tim B, March 17, 2000 - Dear fellow readers, Today has not been a good day to say the least. This morning I awoke with edema in my face so bad that my eyes were almost swollen shut. I checked my ankles to see if I had much there and they were big too. My fingers were tight, as well as my arms and legs. I called my doctor and he got me in immediately because I was having trouble breathing even with the oxygen at 4 liters. When they weighted me, I was a whopping 318 lbs, which is about 38 lbs more that last week at this time. I haven't been urinating hardly at all despite 240mg of Lasix as well as zaroxolyn. Anyway, they put in an IV and gave me 80mg of Lasix that way.
Finally, I went. Anyway, I feel a little better tonight but come Monday I am going into the hospital for 2-3 days and get it done right. I think that if I would have waited another 2 days I could have done some serious damage to what's left of my heart. I was writing down the meds that I take in a day's time and you won't believe what they add up to. I take a total of 23 different meds, with a daily pill count of 53 pills. Every 3 weeks I get my morphine pump refilled and I take 2 shots a day of insulin. There was a time that I was taking 78 pills a day, and the doctor's wonder why I'm sick! All kidding aside, they are needed or I would not be on them. It's a good thing my wife has good insurance. We still pay a copay for each prescription and refills. With myself, 7 for my wife and 6 for our daughter, we still fork out $600 monthly. It's hard when I'm on a fixed income and the wife's pay keeps our head above water. So you see why I believe that all good things come in God's own time. We have never had to beg for anything, thanks to the Lord. Well friends, I think I'll get off and spend some time with my poetry writing, which I love dearly. God bless all of you and Joe, you are in my prayers. I'll write to you soon. Tim Brownie. firstname.lastname@example.org
Jon's March 17 reply to Tim B's March 17, 2000 - Hi Tim, Have you ever had a pharmacist's consult - officially and in writing, I mean? Jon.
Rick M's March 17 reply to Jim's March 16, 2000 - Hi Jim and Joe, It's kind of painful to keep cutting back on activities as you must with CHF, but when you consider the alternative, it's not so bad. Like you Joe, I have had to turn to my wife of 52 years for the fetching and carrying, and I have the added problem of being a 6 foot, 200 pounder, while she is a slight 100 pounder but there she is, carrying the bags while I stroll (that's the best I can do) along beside her.
I believe I was the first to express the thought that living with CHF was like living in a perpetual state of Lent, and being a 75 years old Irish Catholic, I have the perspective of Lenten regulation down through the years. We now abstain from meat on Ash Wednesday and all Fridays of Lent, but up until WWII we had meatless Fridays all year round and life went on. The current problem is, of course, our low sodium diet and in the case of us lucky enough to also be diabetics, low carbohydrate diets as well. I think those of us lucky enough to be blessed by loving wives should make some effort every day to show them how much we appreciate their help (and love). email@example.com
Jon's note: Excellent suggestion!
Rieale's March 17 reply to Ginger's March 17, 2000 - Hi Ginger, Your quest to lose weight is far from stupid. It is a part of treatment for many of us with CHF. It only makes sense that the less weight you carry around, the less your heart has to work. Not to toot my own horn (okay, maybe just a little toot) but I've gone from 297 lbs at diagnosis in January to 255 as of today! If you are overweight, it is even more important than ever to take off excess pounds but please do it safely. I don't know much about Simmon's food mover but make sure it falls within the sodium restrictions of the CHF life. As for the water, I completely agree with Jon. Remember that the diet plan wasn't created for CHFers so you may need to alter it. I know you hear it from every doctor but the way to lose weight is to eat healthy and exercise, within your own limitations, of course. Just keep active. If you or anyone else wants a weight-loss buddy, please e-mail me. We can trade recipes, progress reports and support.
As for faith, I once again have to agree with Jon. Boy, this post is going to make him so conceited. Being 22 years old and fighting for my life challenged my faith in God but it is even stronger now than before. Put your trust in Him. Rieale@aol.com
Jon's note: According to my wife, it's too late to "make" me conceited! <g>
Wanda F, March 17, 2000 - Hi Jon and All, This is only my second time to post but I read the posts and all the good information on the website. I truly appreciate you and all the information. I am 72 and have CM, CHF, arrhythmia and LBBB. I am doing reasonably well but have good days and bad days. The reason I am posting now is because of an article that was on the front page of the Wall Street Journal on March 15, 2000. It really got me excited. There may be information on one of the sites about this but I haven't found it.
The article was headed "For Failing Hearts, Doctors Synchronize Left and Right Ventricles" with a subhead of "Implanted Electrical Devices, Now in Clinical Trials, Show Lots of Promise." This looks like the best news I've read. It says "As an alternative to a heart transplant, it is almost absurdly simple. Doctors can install the device on an outpatient basis." Three companies are presently doing trials and the results of one was to have been made public at a meeting of the American College of Cardiology in Anaheim, California March 15. The article quotes William Abraham, director of the heart failure program at the University of Cincinnati hospital which is one site in the US trials.
This sounds like wonderful news. Let me know if you have more information on this subject. Thanks so much for this site. It's been a tremendous help to me. Wanda F. JPFFSAR@aol.com
Gloria, March 17, 2000 - Hi, I'm another newcomer to this site. I was diagnosed with idiopathic cardiomyopathy a few weeks ago, after driving myself to the emergency room with such a tight feeling of my heart being squeezed that I thought my breathing would stop. They wanted to do a stress echo there and then, but I stubbornly refused. A week later, I scheduled the test, since I wasn't getting better. To make a long story short, after getting a second opinion, I found out I have a 28% EF but no sign of thickening or dilation. I am on 50mg metoprolol twice a day, 10mg prinivil, and 30mg isosorbide.
God has been leading me throughout; I can't believe how much! I was scared and my boss said get a second opinion and offered to send me to the Mayo Clinic in Rochester. I live in Minnesota. I couldn't believe it but I called and the Heart Failure Unit at Mayo asked if I could be there the next day! There is no way that could have happened except by God's hand! I collected my records from the first doctor and just went. I saw a great team of doctors and my insurance is supposed to pay 70%, I hope! Unfortunately the diagnosis was confirmed. I had an angiogram ruling out blockage and was given a whole lot of information, including Dr. Silver's book. Is it normal to feel worse from the drugs or from waiting for them to work? That is what is happening to me now but I don't have any swelling except when I eat the wrong foods. I am scared not to know my long-term prognosis but from reading these posts, maybe that is very common. True? Gloria. firstname.lastname@example.org
Jon, March 17, 2000 - Howdy-doo everyone, Well, the media has whipped everyone's interest into a frenzy, judging from my Inbox! <g> Although similar devices have been in testing for a couple of years, this one got noticed because it was released at the American College of Cardiology's Conference going on as we speak. So, without further ado, I give you this press release straight from the manufacturer, surely unbiased. <lol> I'll put an article about this device on my Pacemakers page when the actual presentation is available, probably Monday. In the meantime, be sure to read up on biventricular pacing, which is what this device does. Let's not get too enthusiastic yet, though. As all the "old-timers" here can testify, every new advance that comes out is called the miracle cure by the press and medical researchers alike at first. <g>
A report presented today (3-15) at the 49th scientific sessions of the American College of Cardiology (ACC) suggests long-term benefits of cardiac resynchronization for heart failure patients. Cardiac resynchronization involves pacing of both left and right lower heart chambers (ventricles) to improve the heart's pumping efficiency.
The report included one-year results of a study conducted in Europe and Canada, which found that improvements in patients' quality of life and exercise time, as well as reduced fatigue seen at one month were maintained at one year following cardiac resynchronization therapy using the Medtronic InSync system. The InSync system is currently in trials in the United States.
The InSync system is an internal pacemaker-like device that is used to resynchronize the beating action of the heart's chambers. This system is implanted in the chest using 2 leads which are placed in the right atrium and right ventricle; a third lead is placed in a vein on the outside of the left ventricle.
Dr. Daniel Gras from Institut Parisien de Rythmologie et de Stimulation Cardiaque in Paris, said, "The question we were trying to answer in this study is whether cardiac resynchronization with the InSync system can have a sustained, positive effect on patients. This system gives us a chance to provide long-term improvement for some patients to halt deterioration of heart function."
The 12-month study included 103 patients from Europe and Canada who had advanced heart failure and abnormalities of their hearts' contraction. "On average, patients in the study said that quality of life was better for them compared with study start," noted Dr. Gras. Quality of life was measured by having patients complete a subjective standard questionnaire which measures 15 activities of daily living, before and at regular intervals during the study.
Doctors who treated the study patients used the usual functional class standards to rate heart function. "Patients were in class 3 or 4 at the beginning of the study, meaning that their activity was seriously restricted," said Dr. Gras. "After 12 months with the InSync system, patients' heart function improved on average by one functional class. Exercise tolerance also improved," said Dr. Gras. "At one month, patients found they could walk an average of 167 feet farther in 6 minutes than they could before therapy. This increased to an average of 194 feet during the 6-minute test after 12 months."
It is estimated that almost 50% of patients with advanced CHF develop abnormalities of their heart contractions. In addition to this study, several other trials are currently underway that will test the effect from implant therapies. The other InSync studies include
Information about participating centers can be obtained at 1-800-551-5544.
- the MUSTIC trial: a European study that began in March, 1998. Separate parts of that study will follow patients with heart failure only and others who also have atrial fibrillation. Preliminary results may be released in May, 2000.
- The MIRACLE trial that began in November, 1998. More than 35 institutions in the USA and Canada are implanting the system and observing its effect on patients' functional capacity and quality of life.
- The MIRACLE ICD trial is evaluating resynchronization therapy for heart failure patients who also need an ICD. patients are implanted with the InSync ICD system. Thirty-five USA and Canadian medical centers are in this trial.
Virginia P, March 17, 2000 - Hi, I have not posted in quite awhile but I have a new problem. Just above both wrists I have swelling, the right wrist being the worst. It feels like one huge lump in each wrist. I am going to the doctor the 23rd and will find out then but was wondering if anyone has had this problem and if so, what was the diagnosis. God bless. Virginia P. email@example.com new address!
Ginger's March 19 reply to Rieale's March 17, 2000 - Thank you Rieale. I e-mailed you. Jon, I want to thank you for reminding me about just what faith really is. I was blaming God for this. It's so hard to remember at times that He doesn't cause these things to happen. So just thank you. As for conceited - we won't go there! <g> Hugs, Ginger. firstname.lastname@example.org
Judy Z's March 19 reply to Tim B's March 17, 2000 - Hi again, First, thanks Jon for your encouragement. I have always wanted to know why and feel it helps in finding solutions. Maybe that's one of the things this situation is trying to teach me, to let go a bit.
To Tim B, You are in my thoughts and prayers. You sound like a great guy with a lot of heart (no pun indended) and family. I'm glad to hear you have your poetry; it can be a wonderful way to express yourself.
To Gloria, as another newbie, I can tell you that fear is a big part of CHF. I go through different stages of it myself. I was scared a lot when I was diagnosed 2 years ago - after the numbness left. I then had a period of hope as the docs have tried all the state of the art drugs, then more fear last week when I was told that my situation had not stabilized. I saw more hope today since I am an optimist by nature and a person of faith. I don't know if my CHF will get better but I do have faith that there is a purpose to all this. Be careful if you start feeling depressed, and get help right away. Depression makes every situation worse. I've had a few nasty bouts of it during my life and was greatly helped by both therapy and spiritual awakening. Good luck and keep in touch. email@example.com
Harriet P, March 19, 2000 - Hi everybody, I hope everyone is doing well. I just wanted you to know that my cardiolite stress test showed that I have had a small heart attack. It was in the damaged area and no further damage was indicated. My cardiologist was quite concerned that my ability to exercise had been cut way down and ordered a catheterization so we could be sure of any additional damage or early clogging of my 2 grafts. The good news is that my grafts are still clear. Of course, the damage is there from before but I'm very happy about that news. My breast biopsy came back negative and now my orders are to really get rid of the stress in my life. That's easy, huh?! We have stopped the Tricor for a month just to see if the extreme fatigue and breathlessness could be coming from that or the addition of it to my long list of medications. God bless you all. It is such a comfort to me to have a family like you. firstname.lastname@example.org
Christine, March 19, 2000 - Aloha Jon, It is me again from sunny Honolulu, Hawaii. I just wanted you to know that I am very grateful for the recent mailing list messages I received on medical updates from you. I was on Zoloft for depression (not only due to my health condition but also my inability to work) when I read your article on what kind of effects this medication had on the brain and that it altered the brain cells in rats to make them look like cockscrews. Well, I went to my doctor and discussed this since I did not feel good. I had multiple symptoms like forgetfulness, hyperactivity, mood swings, loss of appetite, and I could not sleep for 20 out of 24 hours. I just did not feel myself, I felt like an entirely different person and it made me more depressed. So I just wanted to thank you for sending this information to me. I hope others also take advantage of this information to better their lives and to be more knowledgable about the stuff you put down your throats. It can be a matter of life and death. I have been taken off this drug now and feel like myself once again. God bless and take care of yourself, Chris and family. Chrisd1950@aol.com
Charlene, March 19, 2000 - Hi everyone, I've been reading here for a couple of months and learning a lot, being greatly blessed by many of the messages. I had bacterial endocarditis 40 years ago but lived fairly normally until 5 years ago when I was diagnosed with atrial fibrillation, had a single bypass and mitral valve replacement, then 3 days later had major surgery for 2 bleeding ulcers. I also am a polio survivor and use an electric scooter for mobility except in the house. As a result, "exercise" in normal terms is not possible for me. I was diagnosed with class 3 CHF only 3 months ago but I think this was because my cardiologist just didn't want to tell me. My EF then was 31% and my other valves are leaking but not in need of surgery.
Wouldn't you know that the number 1 symptom of post-polio-syndrome is fatigue?! I live in Georgia and there are no CHF clinics in the state and no CHF specialists. In this small city there are only 2 cardiology groups and I've tried both. I'm not really happy with my current doctor but have pretty well exhausted the options. Among other questions, I'd like to ask for suggestions in terms of coping with life in general without very much help. I will be 70 my next birthday. I live with another lady just a little younger than myself and it is I who have been the caretaker these past 13 years, as she has multiple medical problems and is unable to do much. We have a housekeeper who does the heavy housework and someone to do the yard work, but everything else falls to me: cooking, caring for the pets, decision-making financially and otherwise, and so on. What does one do when you are the caretaker and at times it seems impossible just to get up out of the chair and walk across the room?
Neither of us have family within 1,000 miles. I will see the cardiologist again in a couple of weeks and she has indicated by phone that she will probably want to put me on Coreg. I'm concerned that from what I've read, many people feel pretty bad when they first start the drug and there is nobody to care for me if I'm not able to do at least the minimal things. Does anyone have suggestions besides prayer, which is our power? Charlene. TINACHAR@worldnet.att.net
Jon's March 19 reply to Charlene, March 19, 2000 - Howdy-doo Charlene, Call up your local hospital and ask for the medical library. Talk to the librarian there and ask him to look up the nearest congestive heart failure specialists listed in their directory for the Heart Failure Society of America. You can e-mail that society directly via email@example.com. I am in the process of trying to get an official directory for them through my own CHF doc so I can just e-mail people CHF docs' info when they ask, but have had no success yet (don't rag them about that, please). Also, use the AMA doctor finder - by medical specialty - here. You will need to click the link at the bottom of the finders page that "lists more medical specialties", then click cardiovascular diseases, and you will need to list a city since there are too many specialists in Georgia under that heading for the page to list. If you still have no luck, e-mail me and I'll see what I can find. Jon.
Dan, March 19, 2000 - Hi, I have had CHF and cardiomyopothy since 1981. I have never had a heart attack or any surgury or angioplasty. My main thing is I have been fatigued on and off for the past 19 years. Last year my doctor had me take another MUGA and echo. He told me my ejection fraction was about 22% so he put me on Captopril and Coreg, along with what I was taking: Lanoxin, Coumadin and a diuretic.
He then give me the big news, "I think you need to go to Loyola in Chicago to be evaluated for a transplant." I really got scared but went there to see what they had to say. For the next 6 months, I went through every kind of test known to man to see if I would qualify for the transplant list. One of the last tests was an exercise test on the treadmill and I thought I did really badly on it but when I saw the doctor there, he told me I did very well on the exercise test and the heart cath and recomended to the board that at this time I do not need to get on the transplant list! My wife and I cried tears of joy in his office with this good news. The doctor upped my dose of Captopril and Coreg and it seemed to help everything. I have felt better since last April and now go to cardiac rehab twice a week with the bikes and treadmill and stairs. Now I want to go more than twice a week so I am going to ask my doctor if I can go every day. Do you think that would be too much? It was nice being able to tell this story to someone who would understand it. Thank you. Dan. firstname.lastname@example.org
Lori P's March 19 reply to Charlene, March 19, 2000 - Hi Charlene and everybody, Charlene, not everyone has problems taking Coreg at first. It's like any other medication: its side effects vary from person to person. Many people have had great success from Coreg, with very positive results. The nice thing about it is that your doctor won't just throw a big, powerful dose at you. You typically start at a low dose and work your way up. When you get to a dose that you feel you can't handle (too much fatigue, etc,....), be sure to let your doctor know so he can back off a little bit on it. That's just my 2¢ worth. Best of luck. email@example.com
Jan S, March 19, 2000 - Hi, I found this site last November and have kept up on it since then (great stuff - thanks Jon and all). I have a question to those on SSD who have worked some. I know from reading here that the income limit is $700 a month to keep from endangering my SSD, which I need and have been on since last May.
My question is: Does the $700 mean no more than that in any month or is it some kind of income averaging? Say I make $1000 in one month and then don't work for the next 2 months. Would I be risking my SSD? I am scared about the possibility of what working as a substitute in my occupation would do to me physically and what effect it would have on my SSD. My doctor says I can try occasional 6 hour days for a trial basis but I haven't turned in my "note" from him to work yet. I'd love to hear about someone else's experience on this subject. firstname.lastname@example.org
Karen K's March 19 reply to Jan S' March 19, 2000 - Hi Jan and everyone, I'll try to answer your question the way I understand it. If you decide to work while on SSDI you have initially what is called a "trial work period." This is a 9-month period where you can earn as much in any month as you like. Also, those 9 months do not have to be consecutive but, and this is very important because I didn't do this correctly, contact your local SSA office and talk to them about the fact that you are working. They will keep track of your earnings or have you inform them of what you earn. It would also benefit you to ask them to send you their pamphlet about working while on SSDI.
Following the 9-month trial work period, you can then continue to work and receive SSDI as long as your earnings don't exceed $700 in any given month. Should you earn more in any one month, you will not receive SSDI for that month. After 3 years (plus the 9 months of trial work), you will not receive SSDI any more but can maintain your Medicare coverage. Should you find at any time that you cannot work, your coverage can be reinstated. I'm a bit fuzzy on this. That's why I suggest you get their pamphlet. I'm too lazy to look for it right now.
I am just completing my trial work period and have received my SSDI just like in the past. I am up for review next year and mentioned this to the person I spoke with at SSA, who sort of poo-poohed my comment and said they aren't always current on reviews. I'm not taking this to heart as I'm sure they would rather a person would get off Disability. Feel free to e-mail me although I will possibly be offline for several days while installing a new system. I can be reached at work at email@example.com through my daughter at firstname.lastname@example.org. Karen. email@example.com
Dave K's March 19 reply to Jan S' March 19, 2000 - Hi Jan, I am on SSD and also fear what work might do to me. Why tempt fate? I personally think I can do without the $700 if it would kill me to make it. Good luck. Dave K. firstname.lastname@example.org
Billie Jo's March 20 reply to Carolyn's March 16, 2000 - Hi Carolyn, Three months ago, like you, I had a dry cough and got easily fatigued, started gaining weight and had puffy ankles just like what you're describing now. Like you, I didn't have insurance so I made every excuse in the book not to go to the doctor: I'm tired 'cause I work a graveyard shift, my clothes don't fit 'cause I eat too much, blah, blah, blah. I went once and they sent me home with "bronchitis." Three days later I felt worse and my heart felt like it was jumping out of my chest. I ended up in the emergency room and in the ICU for a week with an EF of 10% and an enlarged heart - a little condition known as dilated cardiomyopathy. I also had Congestive Heart Failure. When all was said and done the nurses told me they drained 13 pounds of fluid off my lungs and that people have died with less than that! Looking back I think it would have been a much wiser move to see the doctor when I first wasn't feeling well, insurance or no insurance!
Carolyn, I urge you to see a doctor now! When you do, be sure they take a chest x-ray. If they had done this simple thing for me I would not have been misdiagnosed the first time. Good luck to you and let us all know how you're doing. Billie Jo. email@example.com
Ginger's March 20 reply to Charlene's March 19, 2000 - Hi Charlene, I can't help you with the doctor thing but the needing help being sick and being a caregiver, I can give you a few ideas about. First you call your local church and sometimes they can have people come out and help you or call your local social services; they have different programs that may help. Also, there is a web site that is for caregivers and it may give you some idea's on how to get help. They did me. The Url for it is http://www.webofcare.com. If you would like, I could get an e-mail address for you to someone at that site if that would be easier for you than searching the site. You're a special lady to be a caregiver with beng sick yourself. I know how hard being a caregiver can be. Please take care of yourself. Hugs, Ginger. Mystery@laker.net
Jon's note: Also see www.ec-online.net/Community/communit.htm
Patricia, March 20, 2000 - Hello all, I have been reading all the posts for several months now. I really enjoy them even though I never post anything myself. I just got back home to Indianapolis a few days ago. I went to North Carolina to be with our daughter, who is pregnant with our 8th Grandchild. A few weeks ago she had some blood tests done and the result came back with a possible problem of Trisomy 18. If you do a search on this, you will see that most babies die within the first year and may be born with severe malformations as well as Down's Syndrome. An amnio was performed on her and the fluid was sent to Bowman-Gray Lab in Winston-Salem, North Carolina. It takes 2 weeks for the culture to grow in order for us to find out the results. Our family is very worried about this situation and request that you add Melissa to your prayer list. Thank you Jon, for all the great work you do on this site. It is a great help to be able to talk to other people who know firsthand what we are going through.
Ruthie A, I am looking forward to meeting you and having lunch, but I have a lot of catching up to do since I was out of town; maybe next week. Love to all, Patricia. firstname.lastname@example.org
Billie Jo, March 20, 2000 - Hi ya'll, I had my third echo last week and things seem to be moving in the right direction. I didn't get to see the doctor but the technician was very nice and told me my heart size was shrinking and is almost back to normal size. He also said my EF was up to 30% from 10% at the first echo, and that my leaky valve was no longer leaking. I see my doctor this Thursday and need some advice on what questions to ask. I always seem to blank out and not know what to ask when I'm there. Is there a standard set of things to ask? The tech who did my echo was far more informative than my doctor ever has been; not that he's bad, it's just hard to sometimes understand what he's saying. I don't think he knows the meaning of "layman's terms." I'd appreciate any advice. Thanks, Billie Jo. email@example.com
Sherrell G, March 20, 2000 - Greetings to all, Usually a daily lurker, I wanted to request thoughts and prayers. My chest pain is worse so I ended up in Club Med last week. An echo showed that my EF is basically the same but my left ventricle is larger. The doctor added Aldactone to my medications. I am to have a heart cath this Thursday. Also, welcome to all the new folks. firstname.lastname@example.org
Brian G's March 21 reply to Lori P's March 19, 2000 - Hi, Regarding Coreg, I felt pretty good all along, after the first couple of days after increases. To my surprise, when I was supposed to increase from 12.5mg twice daily, my CHF doc kept it the same. He said my pulse was too low (59) for me to feel good on an increase. Four weeks before he had hoped to double it. I was surprised! I don't get the full benefit of the 50mg (my BP is higher than his goal) but he thought I'd get most of it and still feel ok. BPGruber@yahoo.com
Diane P, March 21, 2000 - Hi, I had a disability physical (?) today where the doctor only listened to my history and my heart. He said my heart was galloping. What does that mean? I haven't heard that term used yet. This horseaholic knows that a gallop is a 4 beat gait. My heart has 4 sounds. What does that mean? Something else to worry about. He dictated the report in front of me and I couldn't have done a better job myself. Diane. email@example.com
Jon's March 21 reply to Diane P's March 21, 2000 - Hi Diane, See this post. Don't forget about the site search engine at the Site Index. Jon.
Luc D's March 21 reply to Amy N's March 16, 2000 - Dear Amy, I'm Luc from Belgium. Most of the people here know me by now. I also have cardiomyopathy. They found it after almost 2 years. You can see my bio on the Who's Who page. I hope you will find good friends here. I'm 34 years old also have very bad days with lots of chest pains and fatigue. People who have such heart disease must help other people and try to give them some courage. We all have some good and bad days. You can talk to me whenever you want to. I wish you and all our friends here all the best that life can give us. Your Belgian friend Luc D. firstname.lastname@example.org
Michelle, March 21, 2000 - Hello, My father had a heart transplant on January 3,1999 and is doing great. He hasn't had to check back into the hospital for any complications since then, until this past weekend. He was complaining of stomach pains and after 3 days of testing, they told him today that his gallbladder is enlarged and they also saw some gall stones. Because his gallbladder is enlarged, they are going to treat him first with antibiotics and then try to drain out some to relieve the pressure. The next step is to perform surgery if they can relieve some of the pressure. Has anyone had any experience with this after a transplant? If so, please let me know. I would like to know some of the risks, more questions I should be asking, etc,... Also, I am always happy to answer or tell you of our experience with my father's transplant. Feel free to e-mail me. Thanks! email@example.com
Mary Ellen, March 21, 2000 - Hey everyone, I am new but have been reading the posts for some time. I am 52 and have had IDCM and CHF for over 3 years. Recently I was documented to have a-fib. I have been telling my doc for some time but I guess until it was seen on a machine, it wasn't real. It sure feels real to me. I am on Vasotec, Coreg, Coumadin, Lasix, Lanoxin, Aldoctone, Paxil and estratab. I was in a test study for Coreg and for me it has been a miracle. Until lately I have had to cut my dose in half. I was getting more tired than usual. Also, the biggest help was the fluid restriction. I wasn't told right away to watch my fluid intake. My doc is over the transplant program at the hospital I go to. My EF started out at 25%, then went up to 30-35% and now it is back where it started. He says there is a good possibility I will need a transplant in the future. I am very glad to find you all. It is a big help to see that others know how I feel. God bless you all. Mary Ellen. firstname.lastname@example.org
Donna Z, March 21, 2000 - Hello All, I just got back from the cardiologist and had a wonderful check-up. I go in this coming Monday for my second echo. The doctor said that the transplant doctor was waiting to see how much I've improved since July, when I was diagnosed. He also asked me if I would talk with some other patients who seem to be having a hard time with CHF. We spoke about starting a support group for people with CHF. My question to you all is how do I go about starting a support group? Private e-mail would be fine. I have no idea how to begin.
I do have to say the best medicine is my new black Labrador Retriever puppy Porter, whom I hope to start showing this spring. I have been very blessed with bouncing back. I thank Jon for this wonderful forum which has helped me so very much, and I will pass this site along to anyone else I can help. A few months ago I did an article for the local paper on CHF and the doctor told me today the office was overwhelmed with phone calls after the article. I even saved someone who saw the article and called because her husband had all the signs of CHF and sure enough, he was diagnosed with CHF and is now doing fine. Thank you Jon and all. God bless you all. email@example.com
Laurie, March 21, 2000 - Hi, I am new to all of this. I have been reading this site for almost a year and haven't seen anyone else with my problem. I was diagnosed a year ago with post-partum cardiomyopothy. I had congestive heart failure after giving birth to my third child. I had never had high blood pressure or heart problems before. I am now on Capoten and Lanoxin. I have also lost 94 pounds, which really helped. Does anyone have any further info on this? I just can't find any on this exact problem. Thanks. BrenLaurieBarth@netscape.net
Leslie M, March 21, 2000 - Hi, We will be losing our health insurance coverage soon, including our prescription coverage. How do other people buy them? Do you have any tips? Does anyone buy their prescriptions in Mexico? Are they safe? I am interested in Coreg, Cozaar and hydralazine. There are others but these are the more expensive ones. Thank you for any advice you can share. firstname.lastname@example.org
Bill D's March 22 reply to Brian G's March 21, 2000 - Hi Brian, You'll be happy to know that my cardiologist said, "You get 80% of the benefit of Coreg when you take 50% of the dose." That was just before he had me stop Coreg entirely. My heart was pumping along at 60 BPM and then it would just stop for 10 seconds or so. I'd been complaining about my "dizzy" spells for the last 2 years. Since I stopped Coreg, the dizzy spells have stopped but my heart sometimes skips 2-4 separate beats in one minute. I sort of hate to give up my Coreg. I've been on it since 1995. Here I have almost a full, 100-count 25mg pill bottle that cost me about $160! Maybe I'll auction it off to the highest bidder! <g> Bill D. email@example.com
Jon, March 22, 2000 - Hi everyone, This is off-topic and I won't do it often but privacy is invaded so often on the Web that I think everyone who uses the Internet should read this and pay attention to the software this guy writes and recommends. He is author and sole developer of Spinrite, so he knows what he's doing. You can read about his concerns and what he's done to help you, if you have the same concerns, at this page. I'm paranoid about software's invasiveness so I am very careful but I still managed to pick up a parasite that broadcast personal info from my machine without my knowing it, in a freeware software package, so you might want to give this a read.
For those of you able to follow it, I strongly recommend you use this guy's Shield's Up pages to reconfigure your dialup-networking in Windows. I plugged a gaping security hole in my own system using his advice, which worked wonderfully. If you use a DSL or a cable modem, then you are at very high risk in this area and really need to buy a firewall. You can tell how much I think of the guy's work by how many other such recommendations I have made - not! Jon.
Virginia P, March 22, 2000 - Hi, I was researching foods that could counteract meds I am on for CHF. I found that people on Lasix and Lanoxin should not eat licorice; the combination could be lethal. I thought it was worth passing on. Virginia. firstname.lastname@example.org
Tim B, March 22, 2000 - Dear Jon and all of my friends, About the medications I am on, I was able to talk to the hospital pharmacists as well as my doctor. They both feel that what I'm on is probably one of the best drug therapies they have seen. I have a heart specialist and he confers with all the others and as the saying goes, 2 heads are better then one. So Jon, I feel pretty safe because I have blood tests every 2 weeks to monitor all my electrolytes, potassium, sodium and other vitals. Thanks for your concern. email@example.com
Ginger, March 23, 2000 - Hiya's, Thanks to exercising for this quest of a 20 lb drop, my lower back problems are back; a tradeoff for now, I guess. Anyhow, have any of you taken Vioxx? I know it's an NSAID but I just wondered if anyone has taken it and how they did on it. I am tryng to get off the pain drugs, so my doc suggested we try this one. Stay well ya'll. Hugs, Ginger. Mystery@laker.net
Jon's March 23 reply to Ginger's March 23, 2000 - Hi Ginger, I was on it for awhile but it didn't help me any more than regular aspirin. I had my best luck with Trilisate. Like everything else, different people have better results with different drugs. You might do very well on Vioxx. Also, hang in there on the weight loss. The more you lose, the less your lower back will gripe at you. :-) Jon.
Billie Jo's March 23 reply to Laurie's March 21, 2000 - Hi Laurie, Try Jon's meet others in the same boat page. I've seen a few there with your same condition. Maybe they can help you with what you seek. I don't have your same condition but am young with DCM and CHF, and I have a baby and 2 young children so I understand the difficulty of trying to care for yourself and for an infant at the same time. Feel free to e-mail me anytime. Good luck, Billie Jo. firstname.lastname@example.org
Debbie's March 23 reply to Laurie's March 21, 2000 - Hello everyone, I'm so glad I found this site! Thank you for creating it. Laurie, you're not alone. My younger sister of 32 delivered a beautiful set of twins in late October - a boy and a girl. Six weeks after her delivery she started having trouble breathing. She was also diagnosed with cardiomyopathy. Her heart was operating at 25%. We are all still in disbelief that this is actually happening to her. The doctors told her this only happens after pregnancy in like one in a million. Like everyone, the doctors have also told her that only medication and time will tell. The medication does seem to be helping her. Her last echo came back positive. I have been trying to educate myself on this as much as possible. I was wondering if anyone has tried any alternative therapy such as acupuncture, chiropractic, massage, reflexology, etc,...? Have they had any positive results? My sister is not online but I will definitely get her over to read this. It must be great support! Thanks again. My prayers are with you all. email@example.com
Jack's March 23 reply to Debbie's March 23, 2000 - Hi Debbie, Tell your sister to stick with the real medical treatments and not to go messing around with quackery. CHF is a life and death situation and shouldn't be complicated by playing games. Jack. firstname.lastname@example.org
Jon's March 23 reply to Debbie's March 23, 2000 - Hiya Debbie, Well, I sat here for awhile and tried to figure out a way to disagree with Jack but couldn't come up with one. <lol> I just don't see how the methods you mentioned would benefit someone with her particular health problems. Jon.
Barbara's March 23 reply to Bill D's March 22, 2000 - Hi, I started Coreg 8/99 at 3.125mg twice daily, then up to 6.25mg with no problems. Today it was increased to 12.5mg twice daily. he said to take 2 tablets 6.25mg each twice daily, then if needed to cut back. I really appreciated his thinking on this! This may not help you with meds you cannot use now but may help at some time in the future. Barb. email@example.com
Jamie S' March 23 reply to Debbie's March 23, 2000 - Hello Debbie, I was diagnosed with PPCM in December, 1997. After being on Coreg and Coumadin, and following the low sodium diet and exercising, I have since fully recovered. My last EF measurement was 74% and I have been off heart meds for over a year. There is one thing that Jack and Jon didn't mention but that I think is a benefit of those alternative treatments is the fact that they are all relaxing and soothing. I agree that they shouldn't be used solely to treat PPCM/CHF but a little relaxation during this can't hurt. Jamie. JAMIEDAN@prodigy.net
Mary Ellen, March 23, 2000 - Hi Everyone, I have questions about Coenzyme Q10. Has anyone ever taken it and if so, did it help? I read the med section here. I am on Coumadin and understand it can be less effective with CoQ10. I will ask my heart doc but would like some input from some of you. Also, does anyone ever crave salty things like crackers and chips? This has just started with me. I am talking really craving, then I drink more. My weight has gone up a little and I know why. I weigh myself every morning so I keep pretty good records. I was wondering if there is a food to help curb the craving; celery is salty tasting. Thanks. firstname.lastname@example.org
Bill D's March 23 reply to Leslie M's March 21, 2000 - Hi Leslie, If it's a short trip to Mexico, you can't beat their prices. Make the Mexican pharmacist show you the bottle he gets his pills out of. Better yet, compare those pills with the ones you've been taking. Drug firms take pains to identify their product with numbers or letters stamped on every pill. If Mexico is too far, write a list and take it to Target or Walmart. Usually, you can't beat their prices. Coreg is the most expensive drug I used to take. <g> Bill D. email@example.com
Brian G's March 23 reply to Bill D's March 22, 2000 - Hi Bill, Regarding Coreg, Thanks for the encouragement! Like I said, I feel pretty good on 25mg per day. I'm sorry you couldn't tolerate it as well. It seems that they are always coming up with better treatment. I guess the more it costs for hospital stays, the more research is done. I'm more optimistic! Thanks again! Brian. BPGruber@yahoo.com
Sherrell G, March 24, 2000 - Hi, I had a very positive experience with my heart cath today. I had read Jon's info on it, so I knew more of what to expect than the doctor had told me. I have no memory of the first cath done in 1994 due to the medications I was on for the SCD episode. Today the day surgery staff and set-up was wonderful. The doctor had personalized my sedation to fit my needs (morphine and Adapan). He explained everything as he went and used the Angio-Seal device to close the puncture in the femoral artery instead of using manual or mechanical compression. Then I lay with one pillow for a short while, then the nurses tilted the whole gurney so technically I was still flat, but could breath much easier. After 2 hours, I was allowed to get up, go to the bathroom and sit up to eat a full lunch. After eating, they released me. I have rested all afternoon and will remain on limited activities until tomorrow afternoon.
The best news is I still have no CAD. The bad news is we still don't have a reason for my chest pain other than it is a part of DCM. We are going to try a calcium channel blocker, Cardizem, and take me off Celebrex since it really hasn't helped. So if you are frightened about a heart cath, read Jon's pages and have faith. For me, it wasn't bad at all. firstname.lastname@example.org
Ruthie A's March 24 reply to Mary Ellen's March 23, 2000 - Hi Mary Ellen, Is your problem salty foods, or is it the munchies with chips and crackers being the culprits of choice? There is a big difference here. If your problem is the munchies, then try peanut butter on celery or apples. If you make it just a small amount of peanut butter, it should satisfy your cravings without adding a lot of sodium or fat. However, if you are craving salty foods, then try cooking with wine when you prepare your meals. It makes food taste salty without adding extra sodium, thus satisfying the salt craving. It is really important to keep the fluids down to your restricted amounts. To keep drinking is to make your heart work harder and that's not good for it. I know it's hard, but this is one of those times when we have to do what we don't necessarily want to do. However, it's worth it in the long run. Check out the low sodium recipes here. You can access them through the Site Index. That should help you with other food ideas that keep the sodium down, which in turn keeps your thirst under control. Hang in there, honey. You will find what works best for you. Ruthie A. email@example.com
Jon, March 24, 2000 - Hi everyone, I am in the midst of upgrading the version of HTML I use from HTML 3.2 to the latest HTML 4 standard. This is taking considerable time on my part and is slowing down my mailing list activity. However, pages are being upgraded at a furious pace. If you spot what seems to you to be an error of any kind on any of my pages, please let me know. I do not have time to go over each page word by word and line by line more than once, so if I miss a mistake the first time around, it's just there forever, pretty much. I appreciate any mistakes you catch and point out to me. Thanks! :-) Jon.
Sharon M, March 24, 2000 - Hey Everyone, I found my way back! Now I hope someone here still remembers me. I haven't read any posts in so long I don't know if any old-timers are still posting. If you are, I hope to hear from you. I'm still the same ol' Desertcat but I dropped the 5 and aol. I didn't like being Desertcat#5 at aol because all my e-mail went through numbers 1, 2, 3, and 4 before they got to me. Now at Mindspring, I am queen Desertcat! How purrrfect. Sorry Jon, but you know cats rule. (Jon's note: tell it to Mr. Dog)
For anyone there who remembers baby Noah, I'd like to bring you up to date. For those of you who don't know about Noah, he is our grandson who will be 2 years old on June 25. He was born by Caesarean in Yuma Arizona and things went poorly with his delivery, which caused a serious lack of oxygen. He was later air-lifted to Phoenix where we have real doctors. He's been doing very well since then. We have some worry about autism because he doesn't talk yet but he's normal in every other way so we remain hopeful.
As for me, I'm doing okay. I've managed to stay out of hospitals for almost 3 years. I had a Cardiolite test back in November, which showed no blockages so I guess my stent is doing what it is supposed to. I have to wonder sometimes why only that one main artery closed up and caused my MI. I mean, the rest are as clear as a whistle so why did that one artery close up? Maybe I'm stupid, but doesn't CAD affect all the vessels and arteries?
I've recently become interested in Internet stock trading so I've been researching biotechnology firms. I'm amazed at what some of these research companies are doing. Also, I'm amazed and disappointed at how quickly a good company can go under just because their procedure or new medication will not be financially beneficial to the cardiologists or clinics. Has anyone ever heard of something called EECP? It's a treatment program for heart disease that is doing wonders for people but it's being completely neglected by doctors because there is no profit in it for them. It's even Medicare approved but only a handful of patients have been treated with it. If anyone is interested in finding out more about the EECP treatment, I suggest you go to the Vasomedical Inc site. Then ask your doctor why you haven't been told about this. It has been available since 1995 and many of us might benefit from this. Don't take my word for it; please go check it out and then make your own opinions.
Well, I feel better now for having gotten all that off my chest. So now, who would like a kitten? From the looks of our stray mamma cat outside, I predict I'll need to find about 8 good homes for her kittens, which are due about any minute now. Take care all, and I'll try better to keep in touch. Sharon. Desertcat@mindspring.com
Jon's March 24 reply to Sharon M's March 24, 2000 - Hi Sharon, It's good to hear from you. I'm glad to hear Noah is doing well. CAD - Coronary Artery Disease - can affect any number of blood vessels. Doctors usually refer to a given patient's CAD as one-vessel, 2-vessel, or 3-vessel disease and so on, because it can occur in any number of arteries. That's why you hear about 2-way or 3-way bypass surgeries and so on. That's how many arteries had to be bypassed in that patient because of blockages. Diffuse artery disease is when the blockages spread into many smaller blood vessels and that's a whole different kettle of fish.
Have you used my search engine to look up some of those therapies here? You can access the search from the Site Index. You'll find EECP info at Heartbytes. You can find the home pages of many health care and biotechnology companies, and incredibly useful web sites in the favorites file available to download at www.chfpatients.com/urls.htm, which unfortunately not many people seem to be trying. Jon.
Joe S' March 24 reply to Jack's March 23, 2000 - Hi Jack, I have to disagree with you regarding chiropractors and agree with Jamie S. I went to a chiropractor 2 weeks ago. He massaged and treated my middle, upper back and shoulders, and my blood pressure dropped 15 points on both sides. Whether this is doing something physical to me, I don't know, but the treatment sure relaxes all the tension out of me. As for me, I will continue to go to the quacks. I sincerely believe muscle tension hurts the heart. Joe S. Jes@stevensonlighting.com
Cindy M's March 24 reply to Debbie's March 23, 2000 - Hi Debbie, In regard to alternative medicine as a treatment for CHF, I'd like to add that as an adjunct to traditional medical treatment, massage therapy by a certified massage therapist might improve blood circulation. It won't actually treat the CHF, but it could improve your sister's feeling of wellness. Cindy M. firstname.lastname@example.org
Karen E's March 24 reply to Mary Ellen's March 23, 2000 - Hey Mary Ellen, My dad has been on CoQ10 supplements for about 5 months now and he says he tells a big difference. He can exercise more now without being so breathless, and he's back to running his dogs twice a day. I had to buy it for him at first because it was kind of expensive, he thought, but after he's been able to see some difference, he says it's money well spent and he buys his own. God bless and take care. Love in Christ, Karen. email@example.com
Billie Jo's March 25 reply to Mary Ellen's March 23, 2000 - Hi Mary Ellen, Regarding CoQ10, I am a strong believer in it. My mom had DCM and was told she only had 2 years to live without a transplant. The docors tried everything but she was just going downhill fast until one day she discovered CoQ10. She did a complete 360° turn around and lived for 12 years after she was supposed to be dead! After I was diagnosed 12/99 with DCM, I started taking it immediately and my EF has steadily improved. I'm not on the same meds as you, so check with your doctor before taking any.
As far as salty food cravings, I think we all have them. Your taste buds will slowly come around and things won't taste so bland without salt. Keep checking labels. I am a teryaki freak and was missing it terribly till I happened upon a brand with only 10mg sodium per one teaspoon serving, which is good. Every other brand has in the area of 800mg per teaspoon or more. The name of it is Keli's Hawaiian Teriyaki Baste & Glaze, available at QFC or Red Apple Marketplaces, if you're interested. Also, watch everything! Things you wouldn't think have salt in them do. One cup of celery has 106mg so get a nutrition almanac. Try Adams no salt added peanut butter and try making your own bread. You can make your own with no salt added butter and salt substitute at only 10mg per slice compared with 150mg or more per slice for store-bought. Just pretend it's the 1800s and fast food and processed foods don't exist. You can also make your own potato chips at a fraction of the sodium. Good luck and visit Kitchen Corner for more ideas. Billie Jo. firstname.lastname@example.org
Billie Jo's March 25 reply to Sharon M's March 24, 2000 - Hi Sharon, Cats rule and dogs drool! Jon, I love dogs too! I have a big cuddly Malamute. Billie Jo. email@example.com
Jon's March 25 reply to Billie Jo's March 25, 2000 - Howdy-doo, My daughter spent the day at a friend's house recently. When she came home, she was trying to explain why she liked her friend's cat. She couldn't really explain it and then the light bulb lit. She said, "It wasn't really like a cat. It was more like a cat-dog!" Jon.
Sally, March 25, 2000 - Hi, I have been trying to find a less expensive source for CoQ10. My local Walmart has 150mg pills for $28. I just heard about this from another CHFer. I take 300mg per day so this is good. firstname.lastname@example.org
Virginia P, March 25, 2000 - Hi, My appointment with this cardiologist Thursday, March 23, was good and bad news. My swelling is fluid backing up in my wrist. He doubled my Lasix and potassium. I was telling him about the information I found about licorice and he confirmed my findings. At the present time a lady was in intensive care as a result of taking Lasix and eating licorice. Her potassium was 1.5. She almost died. I am scheduled for a PET scan in a couple of weeks to see if they need to do a heart cath. I sure hope not. Please keep me in your prayers as this retaining fluid is not a good sign for me. Virginia P. email@example.com
Dick T's March 25 reply to Mary Ellen's March 23, 2000 - Hi Mary Ellen, I have had a craving for salt too, but I know it is one bad habit to consume too much with CHF. Too much sodium will increase your thirst and you will find yourself retaining fluid. It it so important to keep track of your morning weight. A sign you may be retaining too much fluid is a weight gain. Only one pint of extra fluid will add a pound to your weight. Learn to read sodium contents of foods. It seems prepared foods are notorious for their high sodium content. Try to limit your sodium to less than 2000mg a day and your fluid intake to about 2 quarts a day. Learn to read your bodily signs. I can feel when I've overdone the sodium by the increase in my thirst.
About CoQ10, this is one question that does not appear to have a good answer. Many take it and swear by the results they see. Others have taken it with no obvious results. Many doctors have no opinion and will tell you it has not been proven but if you want to take it to go ahead, it cannot hurt you. I think some of those who have taken it with no results have not taken enough. The formula is take about one mg per pound of body weight per day. Some doctors who swear by CoQ10 do blood tests to determine the levels in your blood. They suggest 2 1/2 times the level that would be found in a normal heart. The CoQ10 is like some vitamins. If you take too much, you will pass it. It will not accumulate in your body if you are taking more than needed. Go ahead and try it but I would discuss it first with your doctor. I started taking it 2 weeks ago and take 2 doses a day of 100mg each. My doctor was one of those who had no opinion and was not able to offer me a blood test. I bought enough to take for 4 months. If I have not seen any improvement at the end of the 4 months, I'll stop.
I am also on Coumadin for a-fib, and have my next Protime test in a couple of weeks. I'll have to see if the CoQ10 has any effect. I understand that some CoQ10 products contain vitamin E. The E can have an effect on Coumadin. If you take the same amount of CoQ10 or any other drug that could react with the Coumadin (like aspirin - I take one baby aspirin a day) every day, the Coumadin dose can be regulated.
This site is a great resource. Jon does a great job with all the links to information all CHFers can use. Check out the one he has on Low Sodium Recipes and Food Ideas. It's just one of many links to great info we can all use. Best of luck. Dick T. firstname.lastname@example.org
Mary Ellen's March 25 reply to Ruthie A's March 24, 2000 - Hey Ruthie, Thanks for the tip about cooking with wine. I do believe I get the munchies a lot. My husband has high blood pressure - long before my problems started - so I really watch our salt intake. Just lately I seem to need or want more salt. It started out that I could have 64oz of fluid a day and now it is 48oz. To tell the truth, I do not always keep track exactly but now that I have gotten my nerve up to start taking part in these posts, I will do better. Thanks so much, Mary Ellen. email@example.com
Mary Ellen's March 25 reply to Karen E's March 24, 2000 - Hey Karen, Thanks for your post; the more info the better. It sounds like CoQ10 has really helped your Dad; that's wonderful. I am going to talk with my doc about it. My prayers are with you and your Dad. Thanks, Mary Ellen. firstname.lastname@example.org
Mary Ellen's March 25 reply to Billie Jo's March 25, 2000 - Hi Billie Jo, Thanks for a lot of good new products for me to look for. I love peanut butter and the teriyaki glase sounds great. I have a bread machine (Christmas gift). The recipes usually call for olive oil, and I have been gradually cutting back on salt in the recipes. The more I hear about CoQ10, the better. I know everyone reacts differently. I will ask my doc about it. My son's name is Billy Joe. Thanks, Mary Ellen. email@example.com
Mary Ellen's March 25 reply to Dick T's March 25, 2000 - Hey Dick, I hope CoQ10 does good for you. I will talk to my doc about it. I didn't know one pint of extra fluid equaled one pound of body weight. That should make me be more careful! Thanks again and God bless, Mary Ellen. firstname.lastname@example.org
Donna, March 25, 2000 - Hello, I am writing in hopes of hearing from someone is a similar situation to my hubby, Gary, age 53. Gary is on the heart transplant waiting list in Florida and was actually called for a heart on 3/13. The heart went into failure before being transplanted so Gary was stitched up to wait for a better one! Now he has staph infection and is on "hold" as he undergoes IV therapy (oxycillin) for the next 6 weeks. We've been married 34 years and he is the best friend anyone could ever have. I truly want to find somone in the same boat to cheer him up! donnaA9199@msn.com
Judy M's March 25 reply to Billie Jo's March 25, 2000 - Hi Billie Jo, I have been on a low-sodium diet for most of my life (I'm 68) and can give you a few hints. If you like garlic, use lots of it. Onions also sweeten a homemade soup. Do not use canned veggies or soups, they are mostly salt. Remember that grapefruit juice does not go well with certain heart meds, so check with your doctor. Make sure you drink orange juice and eat bananas to keep up the potassium. I can't take potassium pills because they do a lot of damage to my stomach. I've just started on Coreg for CHF and am very tired all the time but this too shall pass. Keep the good thought! Judy M. email@example.com
Robin Lynn's March 25 reply to Ginger's March 23, 2000 - Hey Ginger, Your post caught my eye. I was put on Vioxx for some pain in my right side that I thought might be liver-related. Anyway, I noticed that I was starting to breathe heavier and my heart irregularities got worse, so on the fifth day I decided not to take it since it wasn't helping my pain any. I began to feel better almost immediately. I brought this up to my internist (the ER doctor prescribed it to me under the supervision of my cardiologist) and she told me I was more than likely having this reaction to it because it causes your body to retain fluid! It was drowning me. She said another few days and I would have been in some serious trouble and for me to never take it again! I did not read about this side effect in any of the pamphlets they give you from the pharmacy. Pay close attention to your body and investigate the med a little further. I have lots of arrhythmias on a normal basis but with that med, I stayed on the floor 3 days, out of breath and scared to death. Good luck and God bless. Robin Lynn, IDCM, cardiospasms, CHF. firstname.lastname@example.org
Patricia's March 25 reply to Ginger's March 23, 2000 - Hi Ginger, I am currently taking Vioxx. I believe it is wonderful. I had to go off it when my free samples ran out and my meds had not gotten here in the mail. After starting to take it again, within 3 days, I was doing fine again. I love it. email@example.com
Pat D's March 26 reply to Mary Ellen's March 23, 2000 - Hi Mary Ellen and all those who have posted about CoQ10, I'd like to put in my 2¢ worth. I've been taking it for many years and although I can't claim a dramatic improvement, it definitely increases my energy level and reduces heartbeat irregularities. I've always taken it in liquid form and was told from the beginning that there is something in the liquid that allows the body to absorb a great deal more CoQ10 than you do with capsules. To prove my point, I only take 10mg a day or if I'm having a bad day, I'll occasionally take 20mg a day. I've also gathered from reading the posts that it takes longer for the capsules to have an initial effect, probably because of the much lower absorption rate. The bottles are 8oz, so it doesn't last a long time. I order direct from a man here in Houston who manufactures it. He has his desk drawers stuffed full of letters from people praising the improvement in their health. I just wanted to share with everyone the difference between liquid and capsule forms. A bottle here costs $15 and lasts about 2 weeks, so that's probably comparable to what the capsules cost. It's not very tasty but you get used to it. firstname.lastname@example.org
Joe S, March 26, 2000 - Hi, I have a big question for anyone. Yesterday I was having bad stomach problems and a friend game me 2 tablets of Gaviscon twice. Then - stupid me - I read the box. That's like closing the gate after the horse is out. Well, the box said each tablet contains 1.3mEq of sodium. That scared me to death, but now it's 12 hours later and I haven't had any side effects. Does anyone have any ideas why? Joe S. email@example.com
Jeanette, March 26, 2000 - Hi all, I'm just checking in to let you know that my CT scan was inconclusive last week because they didn't give me the dye, so here we go again! I am scheduled for another one this Thursday at 11:00am EST. I wish they would get it right! I hate needles! Other than that, I am doing great; tired but great. I can deal with this. Just a note to Billie Jo, Dogs Rule! I love those Rotties, Jon! Tuffy acts like one. I will let you know the results when they are in for my scan. Prayers for all. Take care, Jeanette. firstname.lastname@example.org
Robin Lynn, March 26, 2000 - Hi, About the Vioxx experience I had, I thought as an afterthought it would be helpful for you all to know that I do not take diuretics regularly on a daily basis. This may be the reason I had fluid build up from the Vioxx. I do take Lasix when needed but I don't like to take it because of the dizziness and palpitations it gives me but sometimes it is just an absolute requirement.
I did find some info on Vioxx from Medscape. If you have CHF and your doctor prescribes this med, which is pretty new, you should read up on it through one of the drug links on Jon's Links page. God bless all, Robin Lynn. email@example.com
Sharon M's March 26 reply to Jon's March 24, 2000 - Hi Jon, I didn't read your updated pages before my last post. I should have realized you would already have info there about EECP. Also, for anyone who's interested, Vasomedical has a page up at their site with a kind of slide presentation about the EECP treatment. It's at www.naturalbypass.com. I just found that one myself and thought it was rather interesting.
I read the posts about Vioxx. I took it once and it really did a number on me. Now I take only Tylenol#3 or Percocet if I really need a pain killer but even those make me feel itchy all over and cause sleeplesness. Forgive me Jon, but I just have to ask you why your daughter called her friend's cat a "cat-dog." Did it have doggie breath? Hey, you know I like dogs too. I just like to pick on you. Okay, your turn. For the salt lovers like me who cannot give it up completely, my favorite substitute is made by McCormic. It's called Spice Blends and it's the SantaFe blend. The ingredients are garlic, peppers, cumin and sodium but it's just 70mg of sodium per 1/4 tsp versus salt, which has 590mg per 1/4 tsp. So it isn't sodium-free but it's a big improvement and the taste really grows on you. Take care, everyone. Sharon. firstname.lastname@example.org
Jon's March 26 reply to Sharon M's March 26, 2000 - Hi Sharon, Linz was just trying to figure out how to say something complimentary about a creature as useless as a cat. <g> For what it's worth, Mr. Dog likes cats too; for breakfast, lunch, dinner, or even just a light snack. <lol>
I do have a question. I realize that meds affect everyone quite differently, but are you sure you're talking about Vioxx? It's basically a souped-up aspirin and is not in the same class for power of effect with narcotics like Tylenol number 3, which has codeine or Percocet, which has a powerful dose of hydrocodone (narcotic). Jon.
Linda Grant, March 27, 2000 - Hi, What about kidney stones or infection in CHF? Does this cause serious problems? My husband has CHF and AV replacement. He seems to be getting infections the last few months. Thanks and keep up the wonderful work you put into this site, Jon. It is very much a life saver. Have a good day! email@example.com
Jon's March 27 reply to Linda Grant's March 27, 2000 - Hi Linda, What kind of infections? Did he start off with an in-patient infection, maybe a post-surgical infection? What has he taken for them and what kind of tests has he been given to determine their exact nature? CHF lowers the effectiveness of the immune system but is not directly an infection cause. Jon.
Theresa, March 27, 2000 - Hi, Can you get me more info on InSync or Contak devices. Do you know what hospitals the trials on InSync are? There was as article in the March 15, 2000 Wall Street Journal front page. We have a loved one with serious CHF. I'd like to see if we could get her to a hospital that is trialing the InSync. Ltdcarb@aol.com
Jon's March 27 reply to Theresa's March 27, 2000 - Contact
Janet M, March 27, 2000 - Hi, I just found this forum today and was very pleased. I had open-heart surgery October, 1998. I had a mitral valve replacement (porcine) aortic repair and a single bypass. Just this past November, 1999, I had open-heart surgery again to get a mechanical aortic valve and by-pass repair. It's now the end of March and I don't know how I should be feeling. There are days when I'm just so tired I can't keep my eyes open, I have insomnia, and I've just had a weight gain of 12 pounds in 2 weeks.
Do you ever get the feeling that something is not right? I feel that way right now. The doctors tell me that all is okay but yet I have this sense of dread that I carry with me. Maybe it's just a common fear that most heart patients carry or maybe there is something wrong. After awhile you get tired of complaining. I've been through so much the past 18 months that I don't know if what I'm feeling is normal. In addition to heart problems, I also suffer from chronic pancreatitis. I have a lot of stomach problems also. My ob/gyn just found a polyp in my colon so now I have to have a colonoscopy in April. I am so sick of being sick. Has anyone else just felt that this will never end and that you're doomed to ill health all your life? I don't know who else to voice these concerns to.
Anyone who can identify with this feeling of doom and dread, please let me know how you've overcome this. I want to get on with life but something in the back of my mind stops me. I am taking an antidepressent at this time and that has made me feel somewhat better. firstname.lastname@example.org
Jon's note: Do you have a dog?
Sandi M, March 27, 2000 - Hi, I have not posted for awhile because I have been too sick. Awhile back we were all on the discussion of cramps; leg pain, wrist, hand, and in my case, rib cage cramps that soon became pain throughout my whole upper body. It started out only at night and like cramps coming and going. Soon I was in so much pain I was ready to give up. It turned out that I had pericarditis, which is inflammation of the lining of the heart. I had this 4 years ago after my bypass and was told I would probably never get it again. Well, they were wrong! It is so painful and knocked me down so badly. As far as the leg cramps at night, (thank you, Dee) the quinine water has controlled that. This whole downslide in my health started with a cold virus. My CHF specialist told me that we CHFers get much sicker than the average person with colds, flus and viruses. They can also cause deadly problems. Here all my life I drove myself to try to be above average and now I want to be average.
Also, Jon, thank you for taking care of our e-mail privacy being invaded. I gave my e-mail address on here for people who need to have someone share their problems of CHF - not to be used for mass e-mails. I know this was not your fault and I hope everyone here knows that too. Good health to all, Sandi. email@example.com
Jon's March 27 reply to Sandi M's March 27, 2000 - Hey Sandy, I'm sorry to hear about your run of ill health. As if plain old CHF isn't bad enough, huh?! I want to try that quinine water before bed myself but it makes me gag. If anyone knows of a concoction that makes it taste better, some kind of mixed drink so to speak, please let me know! As for the e-mails, it makes me mad, but in this case the person who stripped the addresses had enough decency to apologise and say he wouldn't do it anymore. I have to give him credit for that, despite how ticked off that sort of thing gets me. I can only hope not too many people get the same idea. Jon.
Bill D's March 27 reply to Janet M's March 27, 2000 - Well Janet, You are fully qualified to join our club! You can probably get in a lot of other clubs as well! <g> If you gained 12 pounds in just 2 weeks, you either had too much salt (sodium) or too much liquid. Welcome to Jon's Place! If you are only reading the messages posted on these forums, you are missing the most valuable part of Jon's site! At the top of each forum page, click on the words Site Index across from "Click Here." You'll find Jon has a gold mine of answers to your questions. Start by reading "The Manual." Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, questions to ask him and how you will get to feel better! You'll find all about how we weigh ourselves in our birthday suits every morning. Do you do it too? Good! Bill D. firstname.lastname@example.org
Janet, March 28, 2000 - Hi, I found that by reading some of the bios you have here, that most of the people are suffering from CHF but I found none who have Rheumatic heart disease. Are there any people here who have suffered from this and have had to have valve replacement because of this? It's nice to be able to hear other people's stories. You don't feel so alone. email@example.com
Sara's March 28 reply to Ginger's March 23, 2000 - Hi Ginger, I was put on Vioxx for pain and when my CHF doctor found out, he wanted me off it since he said it causes fluid buildup. I found that it helped me to take the edge off pain due to nerve compression. Instead of 50mg daily, I just take 25mg once in a while. Good luck and best to all, Sara. firstname.lastname@example.org
Jeanne, March 28, 2000 - Hi, I am visiting this site for the first time. I am writing in the hopes that someone out there will understand what I am going through. I have had pain in my upper back for over 6 months. I am only 30, so of course my heart is the last place they thought to examine. Well, the pain moved to my front at the same time I wore a holter monitor and I had 4000 PVCs in 24 hours. They have prescibed atenolol, which worked for a few hours and made me tired. I am now taking metropolol and have been referred to a cardiologist.
Here's my question: Do any of you have a constant tightness in your chest that never goes away even for the brief moments when you have no pain? Also, I have an appointment to see my doctor tommorow. I have gained 7 inches in my waist in 4 days. The pain has gotten worse. Even though my tubes are tied and I take a birth control pill for hormones, I took a pregnancy test which was negative. I have a 2 and a 4 year old already. My stress test was negative, and my echo was fine. However, I'm not fine. I have gone to the walk-in at least 4 times for chest pain and pain radiating down my left arm.
I have another question: Do any of you out there ever experience pain in a particular vein in your body, then all the pain leaves your chest and goes to that body part. It happened to my wrist and I could see the vein getting huge. Then all the pain transferred to my wrist and then back again, and it left a huge bruise. I would appreciate any comments. It is so true that until someone goes through this, they can't understand it. Jeanne. email@example.com
Sandi M's March 28 reply to Jon's March 27, 2000 - Hi Jon, I know what you mean about the taste of quinine. Try a few things like marichino cherry juice or Knott's berry farm syrups. You can find them in the pancake syrups. They are fat free and only 50mg of sodium per 1/4 cup. I found the blackberry to be the best. I hope you can try it. It is well worth the gagging to get some sleep at night. Sandi. firstname.lastname@example.org
Roz' March 28 reply to Jon's March 27, 2000 - Hi, Although I'm completely ignorant of the use of quinine water for leg cramps, long ago I took quinine regularly for malaria. The bitter stuff of the G in "gin and tonic" is a version of that same chichona bark. If quinine is useful for night leg pain, perhaps the tiny prescription-only pill would solve the palatability problem? Best wishes to all, Roz. RWarriston@aol.com
Jennie's March 28 reply to Jon's March 27, 2000 - Hi, I've been taking 300mg quinine sulphate tablets once a night off and on for several years. They give me the confidence to settle down to sleep without the dread of thigh cramps. I get cramps most places, especially my wrists, ribs and calves. These are bearable but the dreaded inner thigh and hamstring cramps make me sweat at the thought. Anyway, they usually work but unless you time it right, they leave an appalling taste in your mouth. The height of bad taste is about 8 hours after taking them. I usually sleep intermittently so I have to put up with it, but I try to take it about 10-12 hours before I expect to rise. It also seems to be cumulative and the longer you take them, the less noticable it is. So if I take it for 3 or 4 days, then I'll skip a day here or there. I can usually tell when the cramps are stalking, and it works for me. Best wishes, Jennie. email@example.com
Joe S' March 29 reply to Janet's March 28, 2000 - Hi Janet, I had scarlet fever when I was 5 and have lived with the leaky valve for 56 years now. I don't know if this is called a disease, but they say I am going to have to have a new valve very shortly. It isn't any rush with them until the ol' insurance kicks in. Then it's an emergency again. Joe S. firstname.lastname@example.org
Elaine, March 29, 2000 - Hi there everybody, I mainly just read all the posts every day. I've found so much information in Jon's site that most of my questions have been answered. I strongly suggest to anyone who hasn't, check out every site on the Site Index page. Just spend the time to read everything; you can learn so much!
However, one question that I haven't answered is: As far as SSD goes, can I apply on my husband's name and number? I quit working when our first child was born and we chose for me to be home with our children until the last started school. Surprise! My 7 year old is about to finish first grade and I was diagnosed with ICDM and CHF during her last year in kindergarten. So, 3 girls and 13 years later, I don't have the credits to qualify myself and would have to work for 6 years to get them. There's no way. It seems sort of discriminatory that I'm just left out in the cold for raising our girls. So does anyone have any info on this? Thanks so much. Elaine. email@example.com
Xiaojing, March 29, 2000 - Hi, I am a college student doing a research project on the cost of CHF patients. I am having a hard time finding the overall cost for treating one CHF patient. If anyone can help with this project, it would be great. Thanks. Best wishes to all. firstname.lastname@example.org
Jon's March 29 reply to Xiaojing's March 29, 2000 - Hi Xiaojing, Actually we CHFers are quite expensive but my wife says you can buy me cheap if you take immediate delivery. <g> Seriously, have you tried posting to Usenet? The group sci.med.cardiology might generate some useful information for you. Also, see Medweb at Emory University's site. You could also search Medline, since cost analysis/economic impact has become a standard part of many mainstream studies (unfortunately). The American College of Cardiology should also have some information. Most of these resources should be available through my Links page. You night also consider researching consultants' reports like those offered at http://www.milliman.com/research_resources/default.aspx. Jon.
Cindy M's March 30 reply to Elaine's March 29, 2000 - Hi Elaine, I'm glad you've found Jon's Place so helpful and informative. So have I. I've stopped by every day for almost 1½ years. In response to your question about if you can receive SSD benefits based on your husband's working while you took care of your children and household, it's my understanding that you cannot. I'm in complete agreement with you that this seems discriminatory. I stayed home with my second child while I went to night classes (when hubby could watch our son). Because of this I didn't meet the SSD requirements for consecutive years of employment. If I had gotten ill 10 years previous with my first child, I would have; Kind of ironic. I was only about 1-2 credits short of qualifying for SSD when I first thought to apply a little over a year ago. I found that if I could stick it out with a substitute teaching job long enough to earn the credits, I could at least try to get SSD. I managed that and did qualify. I've stopped the sub teaching now, as I have plenty to keep me occupied. I hope there's a way for you to work out a solution. Finally, I would strongly recommend, since I'm not an authority on SSD, that you read over the information at the link to Social Security Disability here at Jon's Place and call your local SSD office for the word from the horse's mouth. Best, Cindy M. email@example.com
Aubrey M, March 30, 2000 - Hi y'all, I'm new here but plan to stick around. This is a great source of information. I inherited my bad heart from my ancestors. I didn't know it was bad until I went to Tanzania last April and contracted malaria and tick fever. When I went to see the doctor about the malaria, he discovered my heart problem and sent me home. The tick fever showed up about 3 weeks later. Presently my situation is not improving. My ejection fraction went from 18 to 24 and back down to 20, so I am looking for help. Since I am on the Mannatech Optimal Health Plan, my immune system is good with no colds or flu at all this winter and no plaque problems either. I do have LBBB and a grossly enlarged left ventricle.
I have started taking magnesium but have no idea how much to take - help please! A friend brought me some CoQ10 and I have been taking 30mg a day. From this page I gather that should be more like 200mg! Does anyone have any suggestions? I take 100mg of Alpha Lipoic acid a day as well and I think it has made a difference. Since I'm introducing myself, I'm 57 and have 3 wonderful kids; the oldest, age 29, has Down's Syndrome and is the joy of our lives. My wife is the best: an import from South Africa. We live in Saskatchewan, Canada. I'm an area representative for Africa Inland Mission and spent 7 years in Zaire. I am looking forward to getting to know some of you! Aub. firstname.lastname@example.org
Roz' March 30 reply to Xiaojing's March 29, 2000 - Dear Xiaojing, I would like to add to Jon's excellent suggestions. Ask your professor to refine your topic. The term "Congestive Heart Failure Patient" covers too broad a variety of medical possibilities, which would probably limit your statistical validity. If you narrow your population to class 4 patients for example, those awaiting transplant, and divide that group into even smaller groups by other criteria (length of hospitilization, age, etc., you might be able to finish before another rise in costs outdates your data! Good luck and best wishes. Roz. RWarriston@aol.com
Lori P, March 31, 2000 - Hi, April first will be my first "birthday!" I can't believe it's already been a year since my heart surgery. I also wanted to tell anyone who is taking iron pills that I have learned a secret. Well, maybe everyone already knows this, but I wasn't aware of it until recently. I became anemic after my surgery and have become dependent on iron supplements. My doctor told me to take a vitamin C pill 1/2 hour before I take my iron, and it helps my system absorb the iron better. I just wanted to pass that little tidbit along. Have a nice weekend, everybody. Take care of yourselves. email@example.com
Joe S' March 31 reply to Aubrey M's March 30, 2000 - Hi Aubrey, I'm definately not the most knowledgable person here but I have some advice. The single most important thing to do is watch your diet. Avoid any foods, spices or additives with too much sodium. This includes things like canned soups, most canned tomato products, most cottage cheeses, even pancakes, etc,... The person who helped me the most was a hospital nutritionist. It's almost impossible to eat out anymore, especially fast foods. Another person who helped was my local butcher, who showed me all the spices you can put on meat without adding sodium. The single worst thing I found was Lawry's Seasoning Salt. It almost kills me. Take a look at Jon's page on this, it will help a lot. Good luck. I'd love to here about your experiences in Africa. Joe S. firstname.lastname@example.org
Billie Jo, March 31, 2000 - Hi ya'll, I've been doing pretty well, except last Saturday night I woke up in the middle of the night with the stomach flu. My 6 year old had just gotten over it so it wasn't surprising that I got it too. I spent the rest of the night throwing up or with diarrhea. I spent all day Sunday resting and am just now feeling somewhat normal, except that my stomach is still upset and I have this strange light pressure sensation in my chest. It gets worse with exercise or if I take a deep breath. My stomach feels kind of bloated and I have bad gas too. My meds were just recently increased and I haven't been eating much due to upset stomach. Could my symtoms just be aftereffects of being sick or the medication increase (Coreg, Zestril, Lanoxin, potassium and furosemide)? Is taking meds on an empty stomach okay or is this something to be concerned about? I'm not short of breath and I have not gained any weight, so I don't think I am retaining fluid or anything. It's just that I'm kind of paranoid of illness now. That's how I originally got my heart condition, was the flu. Am I a worry wart? email@example.com
Jon's note: Coreg should not be taken on an empty stomach
Jeanette's March 31 reply to Aubrey M's March 30, 2000 - Welcome Aubrey, You have come to the right place for help and people who understand what you are going through. Don't be shy and ask, ask, ask if you have any questions. We might be able to put you in the right direction or Jon might be able to put you in touch with the right answers. We are a family here and there is no question that is unanswered and a lot of support is available here too. We all need that, right, Jon? <g> There are 3 pages you will especially want to visit and read here: The Manual, which gives you information on CHF and help you may need from doctor's questions to Social Security information, the Who's Who page, which will help you learn more about us, and the Me Too! page, where you can find others in the same situation and with the same conditions you have. You picked the right place, Aubrey. Welcome! firstname.lastname@example.org
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.