The paperwork never ends The Archives
December 16-31, 2006 Archive Index CHFpatients.com

Mary C's 12-17 reply to William J's 12-15     right-heart cath for measuring pulmonary pressures
 
David W's 12-17 reply to Janet R's 12-15     digoxin toxicity experience & cholesterol
 
Ann D's 12-17 reply to Jon's 12-15     thanks for the info & more
 
Ann D 12-17     stopping or switching beta-blocker questions
 
Jon's 12-17 reply to Ann D's 12-17     stopping or switching beta-blockers
 
Ben B's 12-17 reply to Roger G's 12-15     bypass surgery and more
 
Jon's 12-17 reply to Ben B's 12-17     and to Roger about blocked coronary arteries
 
Giorg 12-17     seek info on new type pacemaker
 
Jon's 12-17 reply to Giorg's 12-17     perhaps you mean CCM
 
Debra S' 12-19 reply to Jon's 12-17     I'd like to see some CCM info
 
Jon's 12-19 reply to Debra S' 12-19     here is some CCM info
 
William L 12-19     can enlarged heart return to normal? and more
 
Ben B's 12-19 reply to Jon's 12-17     blocked arteries are very serious
 
David W 12-19     which study shows 200 cholesterol better?
 
Jon's 12-19 reply to David W's 12-19     which study shows 200 cholesterol better
 
Giorg's 12-19 reply to Jon's 12-17     I think this is the same thing
 
Cindy W 12-19     what is cardiac asthma
 
Jon's 12-19 reply to Cindy W's 12-19     cardiac asthma
 
Marilyn V 12-20     hate to see my husband's mental decline
 
Catherine W 12-20     is there any hope? any options?
 
Nancy S 12-20     please give suggestions or ideas
 
Stephanie H 12-20     I was in CCM trial, my experience
 
Linda K 12-20     American Heart Failure site is a bust
 
Jon's 12-20 reply to Linda K's 12-20     nobody's fault but theirs
 
Jon 12-22     hanging in there
 
Tom S 12-22     implanted devices and attitude
 
Wayne R 12-23     glad to be here
 
Mary C 12-23     it's always something
 
June C's 12-23 reply to Linda K's 12-20     good BiV pacemaker experience
 
Scott B's 12-23 reply to Marilyn's 12-20     make sure the real cause is found
 
Stephanie H's 12-23 reply to Linda K's 12-20     American Heart Failure site
 
Giorg 12-27     maybe this therapy is too new
 
Lori A 12-27     has anyone had this kind of back surgery?
 
Brenda S 12-27     this site is very helpful
 
Linda K's 12-27 reply to June C's 12-23     biventricular pacemaker experience
 
Jon 12-27     web site, business update, family
 
Jon 12-30     family time
 
Barb B 12-30     update, good news
 
Barb B's 12-30 reply to William L's 12-19     hang in there
 
Maggie R 12-30     thought on donations
 
Diane L 12-31     how will second-hand smoking affect him?
 
Sandy N's 12-31 reply to Lori A's 12-27     surgery experience
 
Gwyn O 12-31     how will CHF affect me medium- and long-term?
 
Giorg 12-31     seek anemia experiences
 


Mary C's December 17 reply to William J's December 15, 2006 - Hi William and Peter, My PH specialist said that a right-heart cath (the neck one) is the best way to test pressures. That an echo is only a diagnostic tool, and that heart caths give real numbers. Food for thought. mhcarrs@aol.com
 
Jon's note: Right-heart cath is the gold standard for measuring right-heart and pulmonary pressures because the right heart is connected directly to the lungs.


David W's December 17 reply to Janet R's December 15, 2006 - Hi Janet, I had digoxin toxicity. I have gone off digoxin as over time you can overdose on it if dosage is not constantly monitored. My CHF doc did not think it was helping me much anymore anyway. Your potassium levels can give you problems whether too either too high or too low, and can put you in Club Med. My doc just checked my potassium and calcium levels, and they are fine.
     My cholesterol is 157 but he wants it lower and put me on red rice yeast. I buy it at Wal-mart since it is a mineral supplement and not expensive. I won't go on cholesterol drugs as they have given me bad side effects in the past. Sometimes there are so many things we have to watch that it is hard.
     I went to town a short while ago and got shaky. I ate some nuts and drank a diet soda and felt better. I knew it was either my blood sugar or losing blood and getting anemic. I felt better after eating so I guess it was my blood sugar because if it was anemia, eating does not help. Just get your blood work monitored and with the digoxin thing sometimes the docs don't think to check that but it can cause problems.
     Jon, I hope you get to feeling better. I miss it when you don't post. I wish I was smarter at the computer and could help but I am far from a geek. I am doing well to write and e-mail. wilsond537@aol.com
 
Jon's note: A recent trial showed that a total cholesterol level of around 200 is better than lower for CHFers. Too-low cholesterol is worse for people with heart failure than a level of roughly 200.


Ann D's December 17 reply to Jon's December 15, 2006 - Thanks Jon, for the tip on the medication, torsemide. I'll mention it to the doctor when I see him next. I want to thank you so much for your dedication to the site. You know you have touched so many lives. I've spent hours reading and learning. I'm still finding pages I hadn't seen before. I'll be happy to send in a check to help defray expenses. Thank you from the bottom of my heart. I hope you recover quickly from your fall. Ann Dickey. adickeysa@yahoo.com
 
Jon's note: Everything but the partially torn upper abdominal muscle is doing better now!


Ann D, December 17, 2006 - Hi all, I was wondering how a doctor takes you off a medicine like Coreg. Everyone says that whatever you do, don't stop taking your medicine suddenly. I'd like to know how they do it. No, I'm not going to do it myself, (for me it's working!) but if I had change to another drug, I'd like to know if the doctor tells me the correct way. I'm a little nervous about this guy. I'll be seeing a CHF specialist after a few more tests are run. adickeysa@yahoo.com


Jon's December 17 reply to Ann D's December 17, 2006 - Hi Ann, Stopping a beta-blocker is done differently than switching to a different beta-blocker. When stopping it, dose is slowly reduced, once every two weeks, until you reach zero. However, heart rate is monitored carefully and a slower withdrawal may be necessary. Hydralazine may be used to reduce blood pressure during beta-blocker withdrawal, especially with Coreg since hydralazine has no kickback effect if stopped suddenly.
     When switching from one beta-blocker to another beta-blocker, you don't reduce dose at all. You switch to an equivalent dose of the other beta-blocker to maintain the same level of beta-blockade. For example, I weighed over 188 lbs so I was taking target dose of Coreg at 50mg twice a day. I switched to target dose of Toprol-XL, straight to 200mg once daily. I hope it helps, Jon.


Ben B's December 17 reply to Roger G's December 15, 2006 - Hi Roger, I don't really know anything about chelation, and generally, if you get a couple of opinions, CABGs are remarkably effective after the surgical trauma wears off. I'm afraid I may need one in the future if my heart can take it, although apparently none of my plaques are that large yet.
     However, your post and the fact you are still vertical, does point out one of the secrets about heart attacks. Most heart attacks occur on blockages less than 50% when the plaque fractures and an embolus (clot) suddenly cuts off the blood supply to a portion of the heart. You must have developed a lot of collateral arteries around that 100% blockage. Face it, no matter what happens in that LAD artery (which is one of the most important arteries) it won't get more than 100% blocked. Still, there must be good reasons for the CABG or the doctor wouldn't recommend it. bdbrinkman@juno.com


Jon's December 17 reply to Ben B's December 17, 2006 - Hi Ben and Roger, Don't forget that large areas of the heart normally supplied with blood and oxygen from those blocked arteries are now starving. It is unlikely that there are enough new collateral smaller arteries formed to stop that process, called ischemia.
     Many heart attacks are caused by prolonged ischemia, such as that caused by severely blocked coronary arteries. The starved section of the heart finally just stalls and bam! - heart attack and long-term damage. Don't hesitate, get a second opinion, and make a decision to prevent worse problems down the road. Jon.


Giorg, December 17, 2006 - Hi all, This is about a pacemaker stimulating the vagal nerve. At my last visit with the heart transplant team, one of the doctors told me about a new type of pacemaker that was implanted in just a few people in the world (affected by cardiomyopathy) that is giving promising results. It is a pacemaker that does not stimulate directly ventricules but stimulates vagal nerve, controlling heart's frequency and improving heart's output.
     Has anyone ever heard about that? It seems that all the people who got the implant improved and stabilized. It is not a cure but it can improve quality of life. How long? Who knows? I was told that the vagal nerve pacemaker is the only new stuff around for us with non-ischemic DCM, since stem cells gave varying results and no one (at least in Italy, where I live) really believe in their help at the moment. giorgclunei@hotmail.com


Jon's December 17 reply to Giorg's December 17, 2006 - Hi Giorg, There are some promising new results with stem cells: See chfpatients.com/new/new.htm#bone_marrow_stem_cells for starters. You may be thinking of cardiac contractility modulation or CCM. I am e-mailing you 3 articles about it. Jon.


Debra's December 19 reply to Jon's December 17, 2006 - Hi Jon, I would also like to know about CCM. I have never heard of it. I hope all is better and that you and yours have a wonderful holiday. Debra. r_steinberg@sbcglobal.net


Jon's December 19 reply to Debra's December 19, 2006 - Hi Debra, You - or anyone - can download (for awhile) the 3 articles I have available at these urls:

Let me know if more information is desired and I'll see what I can dig up. Be aware that the two pdf format articles are large in size. This is just some info I already had on hand. I'd bet med students would pay a fortune for access to my hard drive. <g> Jon.


William L, December 19, 2006 - Hi All, A couple of months back I was diagnosed with CHF and have been eating well, exercising and taking meds. I feel pretty good. Also, they said only 15% of blood was being pumped back. My electrolytes blood tests came back okay. Can an enlarged heart get back to normal? What's a good food list to go by? William. poc7@sbcglobal.net


Ben B's December 19 reply to Jon's December 17, 2006 - Hi Jon, You are very right. I hope I did not give the impression that a 100% occlusion of the LAD is not a serious thing. Not to scare anyone, but I think they call that artery the widowmaker. It needs to be dealt with, and probably with a CABG if they can't stent it. My point was actually more on the other side - to say that just because you don't have over 70% occluded arteries doesn't mean you are out of the woods. bdbrinkman@juno.com
 
Jon's note: I think we're in total agreement on the important thing - get a second opinion as soon as possible and get this taken care of one way or another. Ben's advice is usually very good. I was just being sure different phrasing was used to say basically the same thing so no misunderstandings occurred. That's my overgrown sense of responsibilty to readers here, I guess.


David W, December 19, 2006 - Hi Jon, What is the study saying we are better off if our cholesterol is 200? I would like to refer my heart doc to that study, as they want me to get my cholesterol down to 100, which to me is silly. My doc is pretty open minded and will read the study. At least he did not push a cholesterol med which is good as I would not take any of them anyway. The red rice yeast if just a food supplement. wilsond537@aol.com


Jon's December 19 reply to David W's December 19, 2006 - Hi David, See http://info.chfpatients.com/Cholesterol_and_CHF.txt and also make sure you are signed up for the mailing list at chfpatients.com/lists.htm. I will mail out the study tomorrow to give people time to sign up if they are not on the list. It's part of my backlog as I fight the after effects of fibromyalgia, sleep apnea, and my stupid fall down the stairs. Jon.


Giorg's December 19 reply to Jon's December 17, 2006 - Thank you for your response, Jon. I think that is what I was told about, after I focused it better with the help of Internet info, is actually VNS (vagal nerve stimulation). Here is the patent, I guess, http://www.freepatentsonline.com/20030229380.html. Devices similar to that have been already used in neurology (like epilepsy) with good success for some years. Now they are giving good results also in DCM patients (a few all over the world, some of them in Italy). As far as I got, the vagal nerve stimulator can control heart rate and, I do not know how, improve heart's output. It seems promising (good results with a mildly invasive operation) but there is such a small amount of data. giorgclunei@hotmail.com


Cindy W, December 19, 2006 - Hi all, Is anyone familiar with cardiac asthma? My mother has CHF and has recently developed wheezing along with her shortness of breath, generally during the night or early morning. Would you consider this a worsening of her condition? She is 85. cwermuth@myway.com


Jon's December 19 reply to Cindy W's December 19, 2006 - Hi Cindy, Yes. This is usually due to pulmonary edema, the same thing that causes her shortness of breath, just a worsening of same. She needs low sodium diet, more aggressive meds therapy (not just diuretics but also beta-blocker and ACE inhibitor doses as well as possibly Inspra), and she should sleep in the proper position. Jon.


Marilyn V, December 20, 2006 - Hi, My husband was diagnosed with CHF about 9 years ago. He seems to be getting more and more confused, like dementia. He is 64 years old. I have heard that CHF affects the brain because not enough oxygen gets to the brain. I hate to see him so affected by this. He used to be a brilliant teacher. vogskeeter@earthlink.net


Catherine W, December 20, 2006 - Hello, My 60 year old mom has CHF due to an infection, they think. It has been 10 months and her EF of 18% has not changed one iota. She has been to Mayo, and is taking meds, restricting salt intake, etc. Before illness, she exercised (lifted weights and did treadmill) daily, was normal body weight, and had tons of energy.
     She has not recovered or regained any energy since diagnosis at all. It has been recommended that she have an ICD implanted. Are there other options for her to reclaim her life? If recovery has gone nowhere with meds, diet changes and heart clinic supervised therapy in the past 10 months - does this leave hope for much recovery at all? We feel like there are no options. Any input is appreciated. caw888@hotmail.com


Nancy S, December 20, 2006 - Hi, I've been off work for 3 months due to degenerative disc disease and I also have spinal stenosis. Monday I went to take a myelogram. If you don't have to do that, don't let them! As I'm sure most of you know, if you have a pacemaker you can't have an MRI so a myelogram was the best test to see what was going on with me. The doctor said it hurt me worse because of the spinal stenosis.
     Anyway, it's affected my sciatic nerve and I have damage to the muscles and nerves in both legs so I'm not able to get up and around much. I try to cook a light meal and end up having to sit on a stool for the most part. My problem is that now every time I stand up I get very weak and lightheaded like I'm going to faint. Sometimes I also stumble into things. I've had one episode of what my PCP thinks was hypoglycemia (I say thinks because by the time I got there it had stopped since I'd eaten).
     Now here are my questions: Do you think it is from eating too much sugar? I've been snacking on more sweets since I've been off. Could it be weakness due to lying down too much and not getting exercise? Is it possible that my heart is just getting weaker? The last time I saw my CHF specialist he told me that even though my last stress test didn't show anything new, my heart is still weak.
     I'd really appreciate any thoughts on this. I don't have another appointment with my CHF doc until sometime in January I think, but I'm sure I can call and see him if I need to do so. I only go every 6 months. Thank you and God bless you all! Merry Christmas and happy holidays, Nancy. ns1@alltel.net


Stephanie H, December 20, 2006 - Hi everyone, Here is another site with info on CCM, see www.medicalnewstoday.com/medicalnews.php?newsid=51830. The results of the study were also presented at the Heart Failure Society of America 2006 Annual Conference. There is also loads of info on "cardiac contractility modulation" on the web.
     As a participant in this study, this device has improved my quality of life. I had the "Optimizer" implanted in December of 2004. I was 44 years old when diagnosed with IDCM and ventricular tachycardia. I was so fatigued that I could barely think straight. This device has eased my fatigue and allowed me to feel better in general. Obviously, I still take my bucket full of meds and do believe that the meds and the device work together.
     If anyone wants any additional info on CCM (my personal thoughts and experiences), please let me know. howsares@saic.com


Linda K, December 20, 2006 - Merry Christmas, everyone! I just felt moved to drop you all (and especially Jon) a note to let you know how much I appreciate this site. I'm feeling pretty lousy today and that is in spite of the excitement of being only 24 hours away from having my BiV pacer turned on at last. I've been cruising around the web, trying to read all the good things about it, without getting my hopes too high, and I stumbled back upon the American Heart Association site, which I have not visited since early after diagnosis. Without a monitor or an educated community, the amount of misinformation and fear bouncing around those posts is depressing. There is a deadly lack of information, and posts from months ago of people calling out in desperation with no replies.
     Seriously, the AHA should just refer CHFers directly to this site. It's head and shoulders above anything you will find on their site. Any donations to keep this site going is money well spent! You've calmed my anxieties and helped me cope. A happy new year and many strong heartbeats to all! lindakasunick@adelphia.net


Jon's December 20 reply to Linda K's December 20, 2006 - Hi Linda and everyone, This is hard to believe but when the AHA hired web designers to create their CHF section, the contractors e-mailed me and asked me how they could make it the best it could be. I was honest and gave them tried and true answers on how to make the AHA CHF section the best possible. I went to look at it when it was done and they had not used even one of my suggestions. Zip, zero, nada. They really should just send people here - at least everyone here truly cares about other people! My readers are simply the best! Jon.


Jon, December 22, 2006 - Hi everyone, Posts will be running behind for a few days as I spend some holiday time with my daughter, who travels all over the country for her job throughout the year. I am also cleaning my hard drive, which has become something of a mess as I accumulate information that doesn't always get organized for awhile. The Beat Goes On will keep going on, though; just please be patient. Finances are tight and I am test driving all the cars my wife is considering, since hers is a 1994 with over 200,000 miles on it. <g> Toss in continuing left finger problems and I'm a bit slow right now. Jon.


Tom S, December 22, 2006 - Hi all, First off, may the spirit of the season fill you with hope and blessings from the Babe in the manger and a very merry Christmas to all and a happy and healthy new year. This past week (December 19 of 2006) I had my BiV pacer/ICD checkup and actually had the tech who assisted in the implantation of the device back in April of 2006. We had a good chat and I learned a lot about the procedure I didn't know, and some things about human nature that I have always suspected.
     The tech, who has been in the business with Guidant and St. Jude for 20 years, said there is a combination of drugs administered just before the device delivers the test whammy via the ICD portion. He said the cardiac defibrillator delivers a jolt of over 800 volts for about six microseconds - enough to feel it but not a long duration by any stretch of the imagination. One of the drugs actually puts the patient to sleep and the other delivers a dose of Versed, which makes you forget it ever happened. Believe me, it works and works fast.
     The second part of our conversation dealt with my own condition and he said the BiV pacer/ICD was pacing me and he throttled it up a little bit. I do have a long standing arrhythmia which is borderline zappable. The tech told me the most important thing he has noticed about the more successful patients is that they have a very positive attitude and don't sweat every little tick and pain they may feel.
     He noticed my hair was still chestnut brown with a couple of sprigs of grey and he said I must have a very positive attitude. I feel I have one of those enjoy life no matter what I have to endure attitudes. It is too interesting not to find out what happens next. Merry Christmas to all. bigheart@muchomail.com


Wayne R, December 23, 2006 - Hello to all of you, Having just had a semiannual visit and finding out that at least for now I'm stable, I find additional reason to give thanks in this season for which we should all give thanks. I also give thanks for Jon and his unrelenting devotion in his efforts to provide us with the knowledge and inspiration to keep on going. To each of you, God bless. To Jon, my sincere thanks and respect. Wayne. whreos@bresnan.net


Mary C, December 23, 2006 - Hi, Well on top of everything else, I have cellulitis. They removed a skin lesion and in days cellulitis. Now I am on n antibiotic along with everything else. I am thinking next time to have them give me a two-day course of antibiotic before I have anything removed. mhcarrs@aol.com


June C's December 23 reply to Linda K's December 20, 2006 - Hi Linda, I just had my BiV pacemaker programmed last week, and I feel better already. I have more energy, and people say I sound better in person and on the phone. I still get tired if I overdo but I feel much better. Best to you, and merry Christmas. June C. chavisj@tampabay.rr.com


Scott B's December 23 reply to Marilyn's December 20, 2006 - Hi Marilyn, You should be able to get a pretty good opinion from a cardiologist or respirologist on whether the CHF is behind the dementia. It would be a mistake to assume this was the cause just in case there is something else wrong (and it is going untreated). There are easy ways to monitor oxygenation with non-invasive methods. Best of luck. Scott B. scott.brown@sunlife.com


Stephanie H's December 23 reply to Linda K's December 20, 2006 - Hi Linda, I have to agree with you on the AHA site. There is so much misinformation on that site that it boggles the mind. On the rare occassion that I do visit it, I reply to many of the posts and send them to this site. It also appears that there are lots of "advertisers" on the AHA site. howsares@saic.com


Giorg, December 27, 2006 - Hi all, CCM and Optimizer is not what I was told about. Optimer consists of a pacemaker-like device and conventional pacing leads which deliver the therapy to the cardiac tissue. What I am talking about is a vagal nerve stimulator that is implanted under your neck's skin. The aim of the stimulator is to reduce cardiac vagal activity and higher heart rate (that is what beta-blockers are supposed to do in a different way) without delivering electrical impulses to the heart.
     There is such little data that I could only find results of tests on animals on Pubmed using a search for "vagal nerve stimulation heart failure" and you will find something. I was told there is only a startup in the world that is producing that stimulator right now. Maybe it is too early to try it. giorgclunei@hotmail.com


Lori A, December 27, 2006 - Happy holidays and cheer to everybody, Jon, thank you for keeping this site. It's really been great to have a place to see how others cope and to know that your problems are shared. I have IDCM and COPD, though I think both conditions are stable, among other conditions. I am unable to work, and my husband was laid off last week after nearly 20 years at the same company! We have two young sons. Anyway, enough of that!
     I have had back trouble for years. I've already had surgery twice, in the same part of my back. I've been told that the last bit of disk that was in that location is now herniated and there's a small loose disk fragment. The vertebrae are rubbing together and are compressing my nerve roots in that area and it is unstable (L5-S1).
     The doctor says that I need a posterior spinal fusion, with a "cage" implanted, rods and screws. She said that I have to weigh the risks of the surgery with the benefits. I have to get an okay from my pulmonologist and cardiologist before I could "elect" to have this surgery. This would mean I'd be on my stomach for the 6 to 8 hours of surgery, and she said there could be significant blood loss. She expressed concern about my lungs functioning on their own when they take me off the respirator.
     To say the least, the prospect is scary! Has anyone here been through this procedure? simpleefine@hotmail.com


Brenda S, December 27, 2006 - Hello, I just wanted to write a short note thanking you, Jon, for putting together such a fabulous web site. My 34 year old husband just recently found out his left ventricle is dilated and weakened (EF of 40%). He was born with complete AV heart block, he had a pacemaker implanted at age 16. Until two years ago when he developed endocarditis after having his battery replaced, I wouldn't have even known he had a heart condition. His lead wire snapped in the removal surgery leaving him with five inches of potentially contaminated (infected) wire in his chest and was on IV meds for months to rid of the infection.
     After coming through that, he has been doing okay until about two months ago when his cough worsened and he started having extreme fatigue. I have been trying to find articles and information on the Internet to help better understand what is going on, and stopped in my tracks when I found your site. It is very well done and is an excellent resource for people like my husband and I who don't know much about CHF, but would like to be educated enough to ask his cardiologist good questions.
     Your site is the best I've found and I really take comfort in reading the postings from others. It helps put this scary, unknown situation into perspective. Thank you again for your efforts, and happy holidays to everyone! Brenda. dsanne001@neb.rr.com


Linda K's December 27 reply to June C's December 23, 2006 - Hi June, I'm glad to hear your BiV pacer is doing so well for you. I haven't been quite so lucky, but there's still hope. I had been feeling really lousy all week and I felt even worse the day after they turned mine on so I went to see my PCP. It turns out I have picked up a sinus infection and bronchitis! Who knows, maybe I would be feeling even worse now without the pacer.
     To Stephanie, you'd think the AHA would be embarrassed to put up such a sad effort. It just goes to show that you can't judge a web site by how pretty it is. lindaksunick@adelphia.net


Jon, December 27, 2006 - Hi everyone, Well, I sure enjoyed spending so much time with my daughter and her fiance. It did wear me out though. On the business side, CHFpatients.com made 2000 dollars US less than last year overall. Luckily, I have less to buy for the site this upcoming year and am working on an affiliate program to help with income. We'll see. I am getting ready to try out some speech/writing software due to finger pain that leaks through the morphine I take and hopefully that will help. Jon.


Jon, December 30, 2006 - Hi everybody, My wife's on vacation this week so I'm behind here but I am now caught up on my e-mail and am working on posts again but will be behind for one more day. I would apologize but I'm not actually sorry. Family time is rare around here so I grab it when I can. Jon.


Barb B, December 30, 2006 - Hi Jon, I would like to thank you for this site, I have been watching it for the last 11 months when I ended up in the hospital with heart failure. I was 48 at the time and I think my age was why they didn't look at heart failure, plus no family history, no high blood presure, etc. I had been to the doctor prior for problems 3 times about 2 weeks apart in the 6 weeks prior to diagnosis. The third time they finally took x-rays and found my heart enlarged, and send me to a heart doctor who did an echo, and tried to do a stress test (which I couldn't do because I couldn't breathe).
     Then on a fourth visit to the doctor they finally send me to the hospital, and I then had an EF of 30%. They started me on Coreg at 25mg, Diovan at 40mg, and Spirono/Hctz at 25/25 a day. I did fine for a week and then I got sicker. After a month they took me off Coreg, which was making my blood pressure way too low, making it hard to do anything. I was changed to Toprol XL, which worked wonders. I was still going to the Heart Center rather than the Heart Failure Clinic - so finding a heart failure doctor is really important for your health - they know heart failure.
     I am now up to 200mg of Toprol-XL, Diovan at 169mg twice a day, and spironolactone/Hctz at 25/25 one-half a pill a day. I was on a low sodium diet and had to watch my fluid intake, like everyone here. I had another echo done and my heart is back to normal size and my EF is back to normal also. We have one doctor here in town (Dr King) that specializes in heart failure. He runs a heart failure clinic twice a week, so I was lucky there. I now only have to go back to him once a year, after a yearly echo, and have blood tests every 3 months.
     Now the only sign of heart failure is the meds I will have to take the rest of my life, but that's okay, a small price to pay. Oh and the cause of my heart failure was a virus. barbarabodnar@yahoo.com


Barb B's December 30 reply to William L's December 19, 2006 - Hi William, I know that in my case, my heart did go back to normal as did everything else. Follow the your doctor's orders, and pray a lot. Get used to the meds, you've got them the rest of your life. barbarabodnar@yahoo.com


Maggie R, December 30, 2006 - Hi Jon, Just a suggestion for donations on this site. A Christian radio station that I listen to is listener supported. Every month they tell us their quota, or what they need for the month to operate. During the month, they tell us the progress in reaching that goal. At the end of the month, they tell us how much they are short, or how much they are over, applying to past shortages, or applying to special funds. At the end of the year, they usually end up over their quota for the year. They never ask for donations, just give the numbers, and folks usually come up to the challenge. That might work for you. Maggie R. madmaggie@yahoo.com
 
Jon's note: Anyone with ideas on whether this is a good idea, please send me a yes for it's a good idea and a no for it's a bad idea to chfpatients.com/contact.htm.


Diane L, December 31, 2006 - Hi all, My father in law, 83 years old, has congestive heart failure according to his doctor. I am sure he has not been to a specialist, however he is not ready to give up. His doc last suggested bringing in hospice. This sounded like the reaper was knocking on his door.
     The situation is difficult since he is married to someone not well liked by the family. He has diabetes and his kidneys are not fully functioning. A trip to the hospital to remove fluid from his lungs put him on dialysis 3 times. I want to know what second-hand smoking can do to his current heart problem. Thank you for your help. dianelumadue@hotmail.com
 
Jon's note: Hi Diane, It will increase his shortness of breath and inability to physically function in daily activities.


Sandy N's December 31 reply to Lori A's December 27, 2006 - Hi Lori., I had just about the same surgery in 2001 and for me it was the best thing I could have done. My pain is gone. I do not recomend it for you or anyone specifically but if you have a good surgeon and are sure you want to do it, then I send you my prayers for a speedy recovery. Good luck, Sandy. bleuskiiisgrl@yahoo.com


Gwyn O, December 31, 2006 - Hi everyone, I was diagnosed with CHF about 3 months ago. In March of 2005 I had a quadruple bypass and surgery on my left carotid artery. Surgery was scheduled on my right carotid artery for September. In July of 2005 I had a mini-stroke with no noticeable lasting effects, so the surgery on my right caroid was done.
     After my bypass, I kept having irregular heartbeats and breathing difficulties. I was told that it would take a year for me to get my strength back. My symptoms were ignored. In September of this year I went to a different cardiologist. By this time I could not walk across the room without being out of breath. Tests were done and CHF with arrhythmia problems was found. I was also found to have diabetes but with no meds required.
     I am on lisinopril, Toprol-XL, Maxide, Crestor, synthoid and aspirin. I was put on Plavix because I had another mini-stroke last month but it made my ulcer bleed so it was stopped. I feel better, but both fatigue and shortness of breath are still a problem. One big problem is the pain in my legs when I walk - climbing stairs is very painful.
     Is this pain caused by CHF? I asked my doctor about this and he said that to give the medicine time to work. He is still adjusting my meds but I don't go back for 3 months and I was wondering if anyone on this board has this symptom. I have read enought to know that there is no cure for CHF but I am still working and I wonder how long I will be able to work.
     Will I ever feel good again? ggowen49@sbcglobal.net


Giorg, December 31, 2006 - Hi, with DCM and heart failure I got anemic and am low in "serum iron" (blood iron level). Lately my serum iron got to 40 when the normal range is between 70 and 170. Does anyone make something to correct this iron deficiency? Does anyone take iron tablets? Can they help? Maybe curing anemia could give some extra energy. giorgclunei@hotmail.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006 Jon C.

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