The paperwork never ends The Archives
August 16-31, 2006 Archive Index

Roger H's 8-16 reply to Linda K's 8-15     low sodium cookbook helped me
Jim C's 8-16 reply to Jon R's 8-15     blood pressure, patience, adjusting to CHF
Jon 8-17     oh great, one more thing to deal with!
Larry O 8-17     heart rate, symptoms, drug doses & more
Jon's 8-17 reply to Larry O's 8-17     heart rate, symptoms, drug doses & more
Jim C's 8-17     heart rate, holding my breath, drug effects questions
Jon's 8-17 reply to Jim C's 8-17     heart rate, drug effects
Jon 8-17     could sure use some typing help
Mike I 8-17     seek post-bypass surgery recovery experiences
Rick W's 8-18 reply to Mike I's 8-17     post-bypass surgery recovery experience
Maryann H 8-18     seek cardiologist in New York City
Jack P 8-18     BiV pacer, low blood pressure & fatigue - any ideas?
Mary C 8-19     back from vacation, new doc & more
Raija G 8-19     update, thank you for all the support
Tony M 8-19     this site makes it a lot easier, good health update!
Mary C 8-21     seek right heart cath experiences
Robert M 8-21     seek CHF doc in New York City
Marcia H's 8-21 reply to Mike I's 8-17     bypass recovery experience
Eris D 8-21     can you stop meds after getting better?
Debra S 8-21     seek Coreg experiences, options
Jon 8-22     posts and e-mail addresses
Mary S' 8-23 reply to Jon's 8-22     donations question
Jon's 8-23 reply to Mary S' 8-23     donation info
Mary C's 8-23 reply to Robert M's 8-21     finding a heart failure specialist
Jacky B's 8-23 reply to Eris' 8-21     improved heart function and meds
Deborah J 8-23     seek CHF doc in northern Virginia
Lowell P 8-23     why this site matters so much to me
Jon R 8-23     upper respiratory infections, Coreg & more
Mary C's 8-24 reply to Jon R's 8-23     suggestions dealing with cats & allergies
Barb N's 8-24 reply to Jon R's 8-23     asthma drugs and heart failure
Ann L 8-24     allergic reaction to ACE inhibitor - anyone else?
Evelyn G's 8-24 reply to Debra S' 8-21     getting used to Coreg
Jon R 8-24     dental work and antibiotics - do I need them?
Jon's 8-24 reply to Jon R's 8-24     dental work, getting doctors to respond
Mike H 8-24     seek yes and no transplant experiences
Jon's 8-24 reply to Mike H's 8-24     a no transplant experience
Tom S' 8-26 reply to Mike H's 8-24     a no transplant experience
Terry P's 8-26 reply to Mike H's 8-24     very good transplant experience
Giorg's 8-26 reply to Jon's 8-24     would appreciate some details
Jon's 8-26 reply to Giorg's 8-26     my no to transplant experience
Alicia W 8-26     seek others experiences and ideas, please
Sandy N's 8-26 reply to Ann L's 8-24     bad coughing reaction to ACE inhibitors
Sandy N's 8-26 reply to Jon R's 8-24     patient/doctor communication
Kay T 8-26     what should I do about my mom?
Jon's 8-26 reply to Kay T's 8-26     this really burns me
David W's 8-26 reply to Ann L's 8-24     bad ACE inhibitor experience
Lowell P 8-28     kidney function, beta-blockers, questions
Jon's 8-28 reply to Lowell P's 8-28     kidney function, beta-blockers
Ben B's 8-28 reply to Mike H's 8-24     heart transplant
Tom S 8-28     I just thought I was confused before
Pat W's 8-28 reply to Mike H's 8-24     good heart transplant experience
Tamara C 8-30     seek info on end-stage heart failure
Serena R 8-30     doctors, cholesterol, seeking advice
Jon's 8-30 reply to Serena R's 8-30     doctors, cholesterol, support
Jon R 8-30     Advair questions
Mike H 8-30     heart transplant unusual experience
Jon 8-30     drug changes
Linda K's 8-31 reply to Ben B's 8-28     doctors talking heart transplant
Jerry C 8-31     why this severe shortness of breath?
Jack D's 8-31 reply to Jon's 8-30     cholesterol-lowering meds & more

Roger H's August 16 reply to Linda K's August 15, 2006 - Hi Linda and Kisha, When I realized that I was going to have to really check the labels out and totally do without most of the canned goods, I found the No Salt Lowest Sodium Cookbook. I reccomend this to all the people I know that have heart problems. People I work with say, I bet all your food is blah! Not so! There are great recipes in there and everything tastes good, to me anyway, and my wife even loves my cooking and hardly ever adds salt. I've been going on this for the last 5 years now and herbal is good! I'm open to e-mails so I could tell more! Rog.

Jim C's August 16 reply to Jon R's August 15, 2006 - Hi Jon R, It's good to see your EF going up, especially on such a low dose of Coreg. I don't think you have anything to worry about on the blood preasure front. Your blood pressure is in line with mine. In fact, this evening it was 99/63 and I feel great. I even went for a bike ride today.
     It may be useful to know that I experience all sorts of symptoms as I was getting used to my meds. I had some vague chest pains, and some weakness and lightheadedness. If you are like me, and I hope that you are, things should settle down. My doctor recently increased my Coreg dose and my blood pressure went down to 73/48. My resting pulse rate was 46. Obviously, we lowered the dosage. However, I was till able to work. My blood pressure regularly goes below 90/60, especially at the beginning of the day.
     It is easy to get hung up on the numbers - my wife still jokes about the number of times I took my blood pressure in the first couple of months after I was diagnosed. Ask around, but I think you will find that most people agree that the way you feel is a good measure of how well you are.
     Watch your weight, and be concerned about extreme changes in blood preasure, but try not to get too preoccupied with the numbers. Take it from me, the body goes through a lot of changes in a day. Take care and I hope you continue to improve.

Jon, August 17, 2006 - Hi everyone, Well, after seeing a rheumatologist yesterday, he diagnosed me with fibromyalgia and seemed to be certain of it. It does explain the pain, joint problems diarrhea, sleep disorders, and memory fogginess but it's not something I wanted to hear because unfortunately, it can only be "managed" rather than cured. Sound familiar? <g> He - unlike the orthopods I've seen - is willing to work with me so we're going to try local steroid injections for the hips in a few weeks. I can tell you this: I've never had that much blood drawn at once for lab work in my life! It looks like my rash is related to this as well. My immune system doesn't like me.
     I wonder how long I can play this one for sympathy from my wife? ;-) I can tell you this - it really wears me out just sitting here and typing for hours each day; forget cooking and all that other stuff, I'm just plain tired. Jon.

Larry O, August 17, 2006 - Hi, I have arrhythmia and dilated cardiomyopathy. I am on 10mg of Vasotec twice a day for a total of 20 and 25mg of carvedilol (generic Coreg) for a total of 50mg daily. I went for a stress test yesterday and it was stopped early because my heart rate went up too high too soon. My cardiologist told me to increase my carvedilol to 37.5mg twice a day for a total of 75mg daily. Even though I am not overweight and have been at the target dose level of carvedilol, he thinks that that level is not enough for me since it is not keeping my heart rate from rising too high too soon.
     I find all this kind of puzzling because I have no symptoms whatsoever. I can climb a rather steep and long hill with no problems whatsoever. I never experience shortness of breath when doing my daily activities, which include walking 2 or 3 miles at least five days out of seven and doing lawn work. My DCM was found only during a routine EKG three years ago. I wonder how I can do what I do without symptoms if my heart is as bad as what I have been led to believe. An echo says that my ejection fraction is 30%.
     I went to the hospital yesterday feeling pretty good but left feeling as if I have one foot in the grave and the other on a banana peel. I would appreciate hearing any comments on my situation.

Jon's August 17 reply to Larry O's August 17, 2006 - Hi Larry, I'm kind of beat so I may be missing something here: for that reason, I hope others reply. High heart rate can cause a lot of damage over time. Taking care of it now is a good move, so you don't have serious CHF symptoms later. Remember that target doses are not maximum doses. They are the doses proven to give a stated benefit in trials. My own CHF doc had to remind of this a couple of times and what he said was basically, "Do what works."
     You might consider slowing down your neurohormonal systems by adding Inspra or increasing your ACE inhibitor as well. Be sure to read the official treatment guidelines as well as The Manual for more specific information. See and Jon.

Jim C, August 17, 2006 - Hi Jon, Perhaps you can explain something I just learned about my body since I went on heart meds last fall. Before being diagnosed with CHF, I used to enjoy swimming underwater. It was not uncommon for me to stay under water for up to 80 seconds. Obviously, this is not recommended for heart failure patients.
     That being said, I was in the pool with my kids the other day and I forgot myself. I felt like I could stay under a long time but then I did not push it. This evening I experimented by holding my breathing for increasing periods of time, and taking my pulse. The results blew me away. First, I was able to hold my breath for 110 seconds but I decided not to push after that. Secondly, my heart rate barely increased at all, although I was breathing harder for a half a minute. Within 40 seconds, my heart rate was its usual 55 to 60 beats per minute.
     I expected it to be harder to hold my breath. What are the meds doing? Is this what Coreg does? Does it supress the normal response to oxygen deficiency? This is not a health question, but I am a very curious person. If you can direct me to any research, I just want to know. Has anybody else had a similar experience?

Jon's August 17 reply to Jim C's August 17, 2006 - Hi Jim, Have you read the beta-blocker page at It's why I have previous posts bookmarked on a page hardly anyone uses but me, I think - see for the page and see for a post which paraphrases a CHF specialist's reply to this issue.
     Please note that this is a dangerous thing to push to the edge of the envelope rather than a benefit. Why? Because the heart's energy reserve is considerably lower in CHFers than in healthy people so once your organs start to run low on oxygen, they run low fast! As you decondition (and we all do, like to admit it or not), you will find the effects of the drugs are not so prominent. I hope this answers your question. Jon.

Jon, August 17, 2006 - Hi everyone, If anyone can type and has ever filled in the boxes in a Word database (for mail merge - a way to use form letters), please give me a hand. I have a web page of names and addresses I really, really, really need typed into a Word database and no one who has agreed to do it has actually done it yet. I can give you web pages that show how to do it - if you have Word 2000 or later on your computer and you can touch type, you can do it - it's just boring, not at all difficult.
     Please let me know if you are genuinely interested in doing this. Getting this done will hopefully generate donations from medical practices, relieving financial stress here and helping me not ask for donor help so often - let the people who make more money donate more, in effect - the doctors. Please just let me know if you're interested in helping this way. Jon.

Mike I, August 17, 2006 - Hello, I'm 50 years and had a double bypass 07/13/2006. My bypass and first week of recovery were very ordinary (comparatively speaking and I am greatful).
     I have symptoms (hospital) perhaps someone could enlighten me about. I'm in week 5 of recovery but a snafu in our great VA system has delayed any cardiac rehab and the fact that my harvesting wound (in the thigh where they take the blood vessels for the "patch") made my skin so tight that it's taken me 4 weeks to walk with a smaller limp.
     I do understand some of the pain I still feel, but the lack of energy and strength is hard mentally to deal with/without. <lol> The pain and tightness where my abs attach to my ribs I don't understand. The left shoulder pain I get is as if my angina was returning but I have no chest pain, just a sickish sort of a feeling in my stomach kind of like when they pulled the drain out. This seems to occur around and seems to get worse until I take my evening battery of meds (no prescription painkillers), having to use 2 hands to hold and pour a full gallon of milk. I even pulled a muscle on the left side of my neck trying to hold and pour just with my left hand.
     Has anyone experienced any of these? How long should I expect to continue to feel these? How long until I should start feeling normal? How has your life progressed to this point?

Rick W's August 18 reply to Mike I's August 17, 2006 - Hi Mike, I have had two bypasses, one in 1982 and one in 1996. Back when I had my first one, they kept me in the hospital for nearly a month. At about 2 months in, I reinjured my sternum while exercising getting ready to return to work. I was doing push-ups against the bureau. That led to another week at the club and an additional three months of recuperation. After the second, as now, they sent me home three days post-op but I was a little wiser and took it easy, only walking for excercise. I wanted to do more. :-(
     Your body and mind have gone through quite an ordeal. Some of those aches and things could be related to posture changes. Like cracking a rib gives me a backache from slouching in. Give yourself a few more weeks of taking it easy, you earned the rest. Rick.

Maryanne H, August 18, 2006 - Hello, Can anyone give me the name of a good cardiologist in the New York City area? My son has DCM and an arrhythmia. He has never been in heart failure so he would just need a cardiolgist. Thanks.

Jack P, August 18, 2006 - Hello, I am experiencing low blood pressure most every evening (approximately 70/45) with a heart rate of 110 beats per minute. I take diltiazem at 180mg, Benicar at 40mg, as well as Lasix. I had resynchronization therapy (bi-ventricular pacing) two months ago. Obviously, I am very tired and weak most of the time. Does anyone have similar symptoms?

Mary C, August 19, 2006 - Hi, I am back from vacation. I followed most of Jon's rule for a safe vacation. So I feel good, instead of being more sick. I also went to UCSF Medical Center yesterday; what a blessing. I love Dr. Rame. They did a echo, EKG, and thorough exam. The first thing he did was put me on an ACE inhibitor (lisinopril) and Aldactone (spironolactone), 3 weeks apart. So I start the ACE inhibitor, then the Aldatone. He is building me up slowly. If you live in California, he is worth the money.
     Also, Jon it looks like he figured out what happened to me. My two MIs may have been "broken heart" syndrome. Now, that explains a lot, doesn't it. He said in June I was in heart failure, but now I am not but I do have HF and mild pulmonary hypertension. He trying to figure out primary or secondary.
     So I am way happy, because I won't have to see anymore cardiologists here in town, just my PCP and him. I am so happy. He wants to do a right heart cath. I am scared, because my left heart cath went bad. So I told him, once we develop a relationship of trust, maybe.

Raija G, August 19, 2006 - Hi you all and especially Jon, Thank you Jon, for your site which I joined pretty much in the beginning in 1997. I haven't been contributing to the site for years, but today I visited the site again and I am eternally grateful. You gave me hope when I was diagnosed with CHF with an EF of 15% at the time and prognosis about five months at the time.
     In July of 1997 I was put on Coreg by my cardiologist and without that I most probably would not be here any more. My EF has been now for years about 50 to 70%, and even my cardiologist could not believe it. It saved my life. My medications for CHF have been Coreg at 25mg BID, Lanoxin at 0.125mg daily, furosemide (Lasix) at 80mg daily, Losartan at 50mg daily, as well as other medications for other chronic conditions such as type 2 diabetes (Metformin) and high cholesterol (Lipitor at 80mg daily). I did not want to reduce the doses of the medication as reducing is not a good idea with chronic illnesses like diabetes and mental illness (I work in a psychiatric hospital).
     Now I am still working, thank God an office job, I could not do a physical job for any length of time. I still have three years to go to retirement. Thank you all for the support I got about nine years ago on this site. Raya.

Tony M, August 19, 2006 - Hi, I used to read here, post often, and will again. If you're hungry to get facts on heart problems and then would like to know every and all the new and older treatments and drugs available, then this is your web site. It's also a web site that is able to reach people who have CHF deeper and be helpful in allowing people to speak up. It really helps to know there are thousands of us and we are not alone.
     I cannot get my wife, family, friends (there is one), to really understand how this heart disease is like a 300 lb knapsack that you never get away from. You have this overwhelming tiredness if you don't pace yourself 24/7 and that's 24/7 for real. You overdo it and you pay for it.
     Here you feel at home knowing that others have sore legs and feet that vary day from day along with insomnia, etc. People here understand how hard it is to walk briskly with your family and try to talk without gasping because you want to hide it but you can't bore them anymore with the latest heart and medical news, so here is the the place to do just that.
     I have been using a CPAP for 5 months, after finding that I quit breathing during the sleep test and my oxygen levels dropped low enough to cause brain damage, and instead of abruptly waking I would slowly shallow-breathe and then snore three times and stop again. I told my local docs I used to pass out in my dreams. They said I was passing out, based on the sleep study. I got the CPAP the next day instead of three weeks later. Mask fitting is a pain but I am trying nasal next. I had a new scan and my lung nodule is gone! Tony M.

Mary C, August 21, 2006 - Hello, Has anyone had a right heart cath through the neck vein? Jon, I am probably looking in the wrong spot but I can only find info on the groin and wrist cath.
Jon's note: Hi Mary, I had a right heart cath in the same session with a left-heart cath. It's much the same to the patient except the catheter is inserted through the neck instead of the groin. I asked for extra numbing of the neck skin before they did it because I have a twitchy neck.

Robert M, August 21, 2006 - Hi, Can anyone help me find a CHF doctor in New York City? Thank you.

Marcia H's August 21 reply to Mike I's August 17, 2006 - Hi Mike, I had a 6-way in 1999. The doctor gave me this advice - in two months you will be 90% normal. At one month I thought of that and thought, "He is nuts!" At two and a half months I remember it and laughed! He was right. Hang in there.

Eris D, August 21, 2006 - Hello, I was diagnosed with CHF (nonischemic dilated cardiomyopathy) in January of 1997 at age 72. My coronary arteries were found to be essentially normal. I was treated with Losartan, digoxin, furosemide and Coumadin, and about a year later Coreg was added. I asked for this beta-blocker because I heard about it on this web site.
     When I was first diagnosed, my EF was 17%. A subsequent test about two years later showed that number to be 33%. Then in August of 2004, my EF was found to be above 50% and was considered normal. When I was first diagnosed, the report said that I had severe hypokinesis in all region walls. The August 2004 report says that the aortic root and valve are normal, as is the left atrium and left ventricle. My right heart is normal with mild tricuspid regurgitation.
     I was recently in the University of Washington Medical Center because of breathing problems that turned out to an exacerbation of my COPD. While I was there, certain heart tests were done which showed that my heart was still doing fine. When I was discharged, the doctor in charge said that he thought I was taking medicines that were no longer needed, and when I pressed him for which ones, he said he thought I could stop the Coreg.
     I have seen articles on this web site that indicate stopping Coreg might cause the condition to worsen, but I am not sure if the testing was done with people who had had as great an improvement as I have had. Have others on this list had such a great improvement and are you continuing to take Coreg? If you have stopped it, what were the results? I expect it would be important to be tested - maybe six months after stopping. Thanks. Eris.
Jon's note: My EF is 55% now and I still take target dose beta-blocker (Toprol-XL) and higher than target dose ACE inhibitor. The official treatment guidelines state that even if your heart function returns to full normal, no CHFer should stop these two types medication, period. You may be able to reduce dose, though.

Debra S, August 21, 2006 - Hi, Has anyone had side effects from Coreg such as anxiety, nervousness, depression, dizziness, feeling faint, blurred vision, etc,...? If so, what did you do? My doctor tells me to gut it out, but it's getting worse and worse. I would appreciate any advice. I have tried Toprol-XL but it didn't work for me. Debra.
Jon's note: Bisoprolol is another option. It has shown good results for CHF in trials.

Jon, August 22, 2006 - Hi everyone, I am not putting posts up today. I have spent all day working on weeding out no longer valid e-mail addresses from the Who's Who and Me Too sections of the site. Without the help of a reader who wrote me a script, I'd never have gotten started on it. Now I'm into the scut work though - time consuming monkey-capable labor that must be done to make sure all e-mail addresses there are valid. I was shocked to find that apparently at least one of every four is no longer valid. Not for long. ;-)
     I'll catch up on posts tomorrow. Jon.

Mary C's August 23 reply to Jon's August 22, 2006 - Hi Jon, Thanks. You tell it like it is. Hey, I am sending out a donation soon. What's better - Paypal or check? I know Paypal charges you and I'd rather see you get every cent. You have earned it my friend, but I believe Paypal gets it to you sooner. You what is your preference?

Jon's August 23 reply to Mary C's August 23, 2006 - Hi Mary, Thank you for the donations! If you include an e-mail with your check, that's cool. That lets my wife - who is the corporations Financial Secretary - e-mail a receipt letter, saving us time, and cost of ink, paper, stamp and envelope. However, Paypal takes a remarkably small cut of each donation. I was surprised that's all they take but it's certainly acceptable either way to us.
     Even though donation totals are down this year from last year, we did get 23 donations last month, and 2 people really gave with gusto, helping us out a lot! Nonetheless, it's the regular donors of smaller amounts that keep us going day after day after day. :-) Jon.

Mary C's August 23 reply to Robert M's August 21, 2006 - Hi Robert, Go to the docs page and the links page. Jon has oodles of information on how to find a doctor and he is right that a heart failure doctor is much needed by us. I have been through 3 cardiologists. So I know for a fact that is what you want if you have any form of heart failure. Thanks again, Jon. Your web site showed me I was wasting my time with regular cardiologist.

Janice B's August 23 reply to Eris' August 21, 2006 - Hi, A similar thing has happened to me regarding ejection fraction. Five years ago when I was diagnosed with idiopathic dilated cardiomyopathy I was told it was not curable but probably could be kept stable. It was kept pretty stable with Coreg and Diovan, with the symptons not getting any worse. Last summer I realised I felt much better!
     As the year progressed so has my health, no SOB no leg problems when walking upstairs and hills, and overall feeling great! My EF last October was up to 45 to 50% and my BNP was 39! This spring the heart failure specialist said I could start reducing my Coreg dose and I should have another echo in October to see what was happening. Also, I did not need to go to the heart failure clinic for followups anymore but could go to my PCP!
     So far I have reduced my Coreg to 12.5mg twice daily. The maximum dose I could tolerate was 12.5mg in the AM and 25mg in the PM. I have had no problems since reducing it (two months now) and shall reduce it more if the next echo is still good. It is interesting to read your post, the same thing has happend to a person on another board and she is down to 3.25mg twice a day! As Jon always says, How you feel is the important thing! Jacky.

Deborah J, August 23, 2006 - Hi, I am trying to find a good CHF doctor in the northern Virginia area. Any suggestions?

Lowell P, August 23, 2006 - Hi, I just want to remind you Jon, this site is a great source of comfort for me. I find so many folks who share the same problems. Unfortunately, even those very close to us CHFers cannot really relate to a life with CHF. I find myself talking to the wall at times. Thanks for being there Jon, and all you contributors. LP in Arizona.

Jon R, August 23, 2006 - Hello, I have always had problems with upper respiratory infections on and off. I am currently taking Coreg at 6.25 twice a day, lisinopril, and clanazepam at 0.5mg. My docs are aware of the possibility of asthma and I am scheduled for a pulmonologist visit at the end of September. I was given a sample of low dose Advair disc by my regular doctor but am leery of taking it. In the past, albuterol raised my blood pressure and made me real nervous.
     What questions should I be bringing up with my cardiologist and PCP? I should also mention I was working in a dusty attic the other day, which I think is the primary culprit for my wheezing. The allergy season is also bad where I am right now and my girlfriend won't get rid of her cats! Any advice?
Jon's note: Asthma or not, CHFers in Coreg trials had a high rate of upper respiratory infections, so you might consider switching to Toprol-XL or bisoprolol to see if it helps.

Mary C's August 24 reply to Jon R's August 23, 2006 - Hi Jon R, It is not the cats so much as the saliva the cats leave behind on the fur. It dries up and enters the lungs. So wash the cats. My allergist sells stuff to make me feel better. You can wash cats and dogs with it. The company has a web site for "Allergy Max". Try it. It has stuff for asthma, COPD, and other lung diseases. I hope this helps.

Barb N's August 24 reply to Jon R's August 23, 2006 - Hello Jon R, regarding asthma medicines and CHF. I concur that albuterol may not be the best choice for heart disease patients. As a "beta-agonist" it works against beta-blockers and increases blood pressure and heart rate. I believe there is also a fairly recent study showing increased cardiovascular mortality with albuterol use.
     Last year I had a couple of bad months with severe shortness of breath (that didn't reverse with diuretic use) and asthmatic symptoms. On discussion with my physician, we decided to try a course of Spiriva, which was developed to treat COPD. It won't provide rescue from a severe asthma attack but is an inhaled relatively long-lasting bronchodilator that appears to be fairly site specific to the bronchi. I used this sucessfully for several months with no overt changes in blood pressure or heart rate.
     After the heavy duty hay fever season, I withdrew gradually with no problems. You might talk to your doctor and see if this med would be a good option for you.

Ann L, August 24, 2006 - Hello, Has anyone had an experience with a drug allergy to lisinopril? I'm talking major reaction. I just returned from Alaska where it occurred on two successive nights. I have successfully taken the drug for three years. It was sudden onset, the sort of thing one hears about with bee stings or seafood and involved throat, cheeks, tongue, and neck with very hard swelling. Today I got a new rx from the cardiologist to replace the drug. The problem is that five days have passed and I still feel really rotten. I'm left with terrible hoarseness, sore mouth, cough. How does this play out? Help.

Evelyn G's August 24 reply to Debra S' August 21, 2006 - Hi Debra, You don't say how long you have been taking Coreg so I'm gonna give my usual advice. It is one of those medicines that take time to get used to. It took me almost 8 months to get titrated to the full recommended dosage so if this is the case, please give it a chance. I've been taking Coreg since September of 2003. Evelyn.

Jon R, August 24, 2006 - Hi, I will discuss Toprol-XL and bisoprolol with my cardiologist. I am scheduled for some dental work soon: Tooth extraction, etc. I was wondering if I am supposed to be on antibiotics before I get dental work done? I asked my PCP and he said since I did not have a heart murmur, there was no need. I have a hard time talking to my cardiologist due to the fact that he is Chief of Cardiology. Anytime I have a question I am always put on with one of the nurses. My question - is this a common practice or should I expect more of my care. Penn is rated a better hospital than my current hospital, should I think about changing?

Jon's August 24 reply to Jon R's August 24, 2006 - Hi Jon, The official guidelines were changed to require antibiotics before dental work only if significant heart valve dysfunction was present. However, My CHF doc and my dentist agree that I should use the antibiotics even though I have no valve problems, so it's an individual situation.
     All I can give is a personal opinion. I expect my doctor to call me back when I call his office requesting to speak with him. This goes for orthopedists, dermatologists, PCPs, and cardiologists, as well as a rheumatologist now. The question is, are you content with your level of communication? It sounds like you're not and if that is the case, you should make a change. Jon.

Mike H, August 24, 2006 - Hello Everyone, I am being "reviewed" for a heart transplant and am having a hard time deciding what is right for me. I first was diagnosed 5 years ago at age 28 with dilated cardiomyopathy caused by a virus. I saw a CHF specialist at Stanford and was put on the usual meds. I felt pretty good for 4 years and then whammo, I started declining fast. I am now worse off than before and the doctor says that he strongly feels I should get a transplant.
     I have read numerous books, binders, and, this web site but I have still not really spoken with someone who has actually gone through with the transplant and someone who has decided against it and how that turned out. If anyone could share their experiences I would greatly appreciate it. Thanks in advance.

Jon's August 24 reply to Mike H's August 24, 2006 - I can only give you one no "decision" and my CHF doc worked with me to take my CHF meds well past target dose, which in a few months improved me enough to remove the need for transplant. It wasn't a happy few months though, with my blood pressure so low. Now, I'm glad I said no, but everyone has a slightly different situation. Jon.

Tom S' August 26 reply to Mike H's August 24, 2006 - Hi, I said "no" over ten years ago and although it has been a struggle, I believe it was a wise decision. My reason for deciding against it was that a heart transplant is final. There is no going back and getting your old non-rejecting heart back. Going the medical route is definitely easier and with fewer side effects.
     This past April a BiV pacer/ICD was implanted and I must say I have seen definite improvement well above the 3% I was originally quoted as probably getting back. Good luck in your decision. Whatever you decide you will have to live with it, not us.

Terry P's August 26 reply to Mike H's August 24, 2006 - Hi Mike, My experience was similar to yours. I felt great for 5 years then slid really fast. I was put on a VAD for 17 months while waiting for for a new heart. I had a heart transplant in February and have felt great ever since. I'm off all the heart meds and am now on anti-rejection drugs.
     My own personal experience is that the transplant was the best thing that could have happened to me, otherwise I wouldn't be here today. I got to look at my old heart and I'm honestly glad it's gone - it was in sad shape. I'm 48 and they have me pumping iron in rehab and I'm going back to work next month.

Giorg's August 26 reply to Jon's August 24, 2006 - Hey Jon, what you wrote is very interesting. I would like to know everything about that period of your life when you pushed further medications and then began to improve. Did you explain somewhere in the site what happened exactly to your exams (EF, heart pumping, pulmonary pressures and blood pressures) in that period?
     I am deciding with a heart transplant team in these days if I am ready for a heart transplant, and meanwhile my cardiologist is pushing my ACE inhibitor to see if my heart pumping improves but my blood pressure is so low (80/40 that, I was thinking to ask to reduce medications. However, if it worked with you, I will try to resist. Actually, with my form of DCM, there are not many hopes of avoiding heart transplant, but maybe I can gain some months or years more. I am very interested if with you it was ACE or rather beta-blockers that helped in that period. Thank you.

Jon's August 26 reply to Giorg's August 26, 2006 - Hi Giorg, My CHF doctor recommended transplant when my EF dropped from roughly 30% to the teens in about a week. I went to his office one day without even calling first because I felt so bad compared to just a couple of days before. The sense of fullness in my chest and stomach was unreal - I could hardly breathe. He was at a different office and the nurse who saw me blew me off. I told her she had better think twice about blowing me off and to give me some IV diuretic or she could explain to my CHF doc the next day why I was in the ER after being turned away from his office.
     She turned me over to the nurse (with advanced degrees) who was in charge of most drug trials and with whom I had a great relationship after being in 2 trials already there. She gave me IV Lasix and it did no good at all. She said either go to the ER or call again tomorrow.
     I received a call from my CHF doc the next morning, telling me to come in immediately and he'd work me in. He said a patients knows when something's not right and he wanted a complete exam with echo right now. I went in and got all that. He told me my EF had gone clear down the toilet and it was time to talk transplant.
     You can take this part any way you want but it's the truth. I said no before I even had time to form the word in my brain. I truly believe I was led by God to say no at that time - it was that fast - and I was absolutely certain this was the correct response without any time at all to think about it. That's why I always say that every CHFer has a different situation. In my situation, I was led to walk the long road with heart failure, maybe to keep this site going, maybe for some reason I'll never know.
     My doc accepted my decision. He has always been a partner in my care, never an overbearing or arrogant physician and I would recommend him to anyone with CHF. His name is Charles Porter at Mid-America Cardiology with offices in Kansas and western Missouri. Right now he's in Bosnia giving medical care for free to those in dire straits in that country. Dr. Genton and Dr. Bresnahan are also outstanding at that practice.
     Back to me, Dr. Porter said, okay, if we're not going to go by the book, we'll just go all the way and see what meds will really do, but I had to agree to be closely monitored, with a lot of office visits. We took my ACE inhibitor, Vasotec (enalapril), to twice the target dose (twice a day), dropped my sodium intake and went back to a fluid intake restriction. This was, I think in late 1995 or early 1996 and I didn't start Coreg until August of 1996 so I wasn't even on a beta-blocker at this time. (I had to search the Archives from 1997 to get this info - they aren't even online). I was taking 120 mg Lasix daily at that time.
     My blood pressure was unreadable. The nurses gave up even trying and Dr. Porter (who is fanatic about giving thorough stethescope exams) couldn't find it at all. I was in this shape for quiet a few months, tired beyond belief. After several months, an echo showed my EF rising and it continued to do so until it hit roughly 35% and the improvement stopped. We slowly dropped my ACE inhibitor dose because I was so tired, but kept it at target dose and my EF stayed steady. It was about this time that I start a Coreg trial. My doc said what we did was basically give my heart the most rest (reduced its work load) to the max and that gave it a chance to bounce back a ways. For what it's worth, that's the story. Jon.

Alicia W, August 26, 2006 - Hi, I'm new to the board. I am 29 years old and I was diagnosed with dilated cardiomyopathy in January of 2000 at age 22. I take Coreg, Vasotec, digoxin (Lanoxin), Aldactone (spironolactone), Lasix and 2 drugs for diabetes. I was wondering what is the life expectancy of someone with dilated cardiomyopathy being diagnosed so early in life?
     My doctor says I'm doing well and I've been taking the same meds since 2000. Even though I am doing much better there are times when I have my bad days. What hurts most is some of the things I can't do with my two kids. My EF is in the 40-something percent range.
     Also, I was wondering if there was anyone in here who had suspicions that their cardiomyopathy was caused by terbutaline (brethine). Please get back to me. I have so many unanswered questions.

Sandy N's August 26 reply to Ann L's August 24, 2006 - Hi Ann, I too had a horrible reaction to Ace inhibitors. I coughed so much and so hard that it was not nice. My doctor changed my script and it went away. When I enter the hospital for any reason I tell them that I am allergic to ACE inhibitors to sure no one gives it to me. Good luck to you!

Sandy N's August 26 reply to Jon R's August 24, 2006 - Hi Jon, I bypass the nurses now. My cardiologist gave me his e-mail address. If I only want an answer from him, I send an e-mail. He either calls me at the end of the day or sends me an e-mail back. See if your doctors will agree to this. Best of luck to you!

Kay T, August 26, 2006 - Hello, My 76 year old mother has class 3 CHF they think due to the chemotherapy for lymphoma. She had a TEE on Monday and a cardiac cath this next Monday. She is getting weaker by the day. Her EF is around 15 to 20%.
     I just don't know anything about this disease and would appreciate some guidance and what to expect. I live 80 miles from her. Does she need to be in the hospital now? She is on no meds except Lasix. They are waiting on the cath to decide medications. I need some info on prognosis, etc if anyone has anything to tell me it would help!
     Thanks Jon, for this site. Kay.

Jon's August 26 reply to Kay T's August 26, 2006 - Hi Kay, There is no excuse for a doctor not to start her immediately on heart failure meds, considering her known low EF and high heart class - no excuse at all - it's malpractice in my opinion. Although I am not a doctor, I can read the official treatment guidelines and they say her treatment is currently indefensibly bad.
     She should be started on a beta-blocker immediately while she's in the hospital because of her overall situation. Get her to a heart failure specialist immediately, even if it means taking her to an emergency room at a hospital with a HF clinic or a university teaching hospital and asking to have her admitted inpatient. Print out The Manual and the official HF treatment guidelines to take with you.

David W's August 26 reply to Ann L's August 24, 2006 - Hi Ann, I had problems with lisinopril and had to stop taking it. It dropped my blood pressure like a rock even at very small doses. I am afraid of the other ACE inhibitors and don't take one anymore. I also stopped taking digitex as it got to where it did not help and made me more tired. I guess our bodies just change and the way we handle meds can change too.

Lowell P, August 28, 2006 - Hi Jon, I hope you are feeling better now. You've had a bad few months. I had another lab test for creatinine and BUN this week. They were 1.7 and 62 respectivley previously. I have increased my fluids and the BUN is now 40 and the creatinine unchanged at 1.7. My blood pressure had been in the 125/70 range. Yesterday I saw my cardiologist for the first time in almost a year and was a bit apprehensive and consequently during my office visit my blood pressure was beyond normal to 180/95. I told him this was not typical but he gave me a prescription anyway for hydrochlorothiazide at 25mg per day to reduce my blood pressure. In light of the fact that I am not retaining fluid and am on Lasix 40mg twice a week, why not just increase the Lasix?
     I want to talk to my PCP who has been seeing me every six weeks. He, the cardiologist, also wants to do an echo, a renal ultrasound and a stress test. This I agree with, as my kidneys are not working really well and it's been a long time since the stress test and echo. He also said Toprol-XL wasn't nearly as good as Coreg but would not change me. Any comments, Jon?

Jon's August 28 reply to Lowell P's August 28, 2006 - Hi Lowell, My attitude is good but my body will be more and more of a problem for me now. Fibromyalgia mainly is a condition of pain, stiffness, and depression. Unfortunately, the rheumatologist has not yet ruled out lupus and is doing more lab testing. My morphine dose was doubled today so we'll see how that goes.
     Actually, thiazide diuretic added to your Lasix may not be a bad idea, Lowell. It is known to reduce blood pressure pretty well and puts less stress on your system than loop diuretics. As for the differences between Coreg and Toprol-XL, here are two urls that explain it all:
     I switched from Coreg to Toprol-XL at my request and I'm not stupid. One is better for some CHFers while the other is better for the rest. Jon.

Ben B's August 28 reply to Mike H's August 24, 2006 - Hi Mike, I have no personal transplant story. It was mentioned to me in an offhand way as a possibility when I was diagnosed, but I have never been sick enough to even possibly consider it yet. The thing that is funny to me is how it is so predictable for doctors to mention it. Immediately after they tell you that you have 5 years to live (completely ridiculous) they tell you that you may be able to get a transplant.
     For some reason they think the idea of a transplant is a real calming notion to someone who just found out they have heart disease. The truth is that for many people transplant is the only option and a miracle. But the reality also is that even though doctors mention them to everyone, very few people qualify, and a tiny number of people actually receive them. You may be one who just has no alternative. Good luck in your decision.

Tom S, August 28, 2006 - Hey, Will the real "Jon" please stand up? It's getting to be like a "To Tell The Truth" show around here with all the Jons popping up like spring wheat. As one who is naturally confused, due to mental pause disease setting in at a young age, my sorting process does not set in until I start reading each Jon's posts. There are definite differences in style.
     Oh well, I guess I can make a mental game of it for a while. Who knows, I might go from mental pause to just plain mental.

Pat W's August 28 reply to Mike H's August 24, 2006 - Hi Mike and everyone, I would like to share my experience with you all. I too lived with dilated cardiomyopathy for 9-1/2 years. I suddenly took a turn for the worse, and was told that I needed to be evaluated for transplant. I was shocked, and scared but I was also told that it was the only way to sustain my life longer than a few months. I was in end-stage heart failure, both sides of my heart in failure. I agreed to the transplant, sold my home and my restaurant, and relocated from the small town I had known as home for the previous eleven years. I went to Tuscon, Arizona to the University of Arizona Medical Center.
     I didn't know what to expect, because the doctors from the small town I came from didn't know what to tell me. Anyway, to make a long story short, I was listed and waited approximately 4 months until the the call came. I went in to surgery, which took 7 hours but I didn't wake up until the next day, and when I did it was a new day!
     I felt tremendous. I didn't feel sick, I didn't feel short of breath, I felt energized. I tried to remove my tubes, I wanted to talk to everyone. My skin returned to a healthy hue. It was amazing. That was 12/21/2005 and I have since been bowling, hiking, bike riding, zoo visiting, took a cross country vacation in the car, gone to Vegas, and had a grand time doing it all. Not one time was I reminded that I used to have dilated cardiomyopathy.
     On my six-month post transplant checkup, my doc told me that my EF was 63%, heart function normal. I hadn't heard that in years and years. I take 9 pills in the morning and 9 pills in the evening, and an oral suspension 3 times a day. I have had no rejection episodes. I have also started college classes. So transplant has really changed my life for the better.
     I guess my view is that if you don't need a transplant, keep your own as long as you can, but if you do need one, my experience is that it is worth the outcome. I must add that I have been told that my case is exceptional, as 90% of all heart transplant patients experience some sort of rejection episode inside the first year, that is the norm. However, rejection can often be treated and in most cases is stopped. I used to comment on this site as NM Pat, Pat from New Mexico. I am 44 years old.
     Mike, or anyone, please feel free to e-mail, pick my brain, or just to talk. Excuse the spelling! May God bless you all.

Tamara C, August 30, 2006 - Hi all, My mother has CHF. She has really gone down in the past 2 years. She has been in and out of the hospital the past couple of months. I was wondering if anyone could tell me what the end stage of CHF is. Her cardiologist came in Thursday and talked to us about putting a pacemaker in. He told us that her digoxin (Lanoxin) and other heart meds were not working any longer. He also said that her heart was just overexerting itself (rapid heart beat). August 28th she had a pacemaker put in and her blood pressure after surgery was low at 96 over 55.That really concerns me.She also looks really bad. If you could be honest and give me some information I would apprieciate it. Thanks, Tamara.

Serena R, August 30, 2006 - Hi all, I have a bit of a general question and the need to vent. I always refer to this site and often read the forum, though I don't post much. I accompanied my dad to the cardiologist's office today for his appointment, because he has been curious about his cholesterol levels (he has a LDL of 95 mg/dl) as the cardiologist had suggested Dad taking a statin. I, along with my dad, asked the CHF specialist if he could help us better understand the concerns of using statins in HF and also about studies relating lower LDL values and higher mortality studies (from Jon's site).
     Unfortunately, the doctor yelled at me in the office and told me that whatever I was doing wasn't helping my dad. He also chose to angrily tell us that if we don't trust him we should just use the Internet to figure everything out, along with a bunch of other things. He never tried to answer the question but only yelled at me for asking a question. I was really in shock and am upset. Doesn't he realize that this whole thing is confusing for the patient and the family and we just want to make the best decisions?
     We took so much time to educate ourselves on the issues the best we could, so we could communicate effectively with the physician. I'm so confused. What does my dad do with his questions from now on? We look to our physician for more information; what happens when that option seems unattractive?
     I've been very fortunate to learn about the importance of having the right doctor and have also gained a sense of a good doctor-patient relationship from this site and forum. I personally feel like I've been kicked out the caregiver circle by the doctor and am worried if I can or should provide the support my Dad wants (he often asks me to help him find info and sort through it with him). I like doing it too, it lets us all feel like we are doing the best we can when it comes to HF.
     I guess I'm wondering about: 1) How to interact with the specialist? 2) Asking questions and getting answers, without feeling like I've insulted the physician. Anyway, I really appreciate that I'm able to share this here, it really helps, and any info about how to tackle doctors helps. Plus, my dad is still confused about low LDL and heart failure. Jon, has there been any new work addressing the new LDL standard (70 vs 100 mg/dl) and lowering LDL in HF patients? Thanks so much.

Jon's August 30 reply to Serena R's August 30, 2006 - Hi Serena, First, I think it's great that you and your dad form a "family support group." This is terribly important for the person with heart failure, believe me. It sounds to me like you've done a good job - considering your dad's current LDL level, I am surprised at a doctor wanting to add a statin. If he really thought it necessary, why not ezetimide or Vytorin so that side effects could be kept to a minimum.
     My own LDL is 110 and I am currently working on life style changes, especially in exercise and activity level to bring it down a bit. My CHF doc suggested Vytorin but he didn't get rattled at all when I said no and that if after 12 months, my lipids got worse instead of better, I'd consider it. All my doctors (neurologist, GI, PCP, rheumatologist, and cardiologist) are used to me coming in with 2 copies of the same list of concerns, questions and ideas. I hand him one and we go through the issues one at a time. He can then stick this in my medical record and we have a sure-fire history of what's been addressed.
     As far as the doctor goes, what would he think of your dad getting a second medical opinion when a surgery or invasive procedure is suggested? He sounds like he believes he is always right and to me that's a problem. Personally, if at all possible with your dad's health insurance, I'd get another doctor.
     As far as statin and cholesterol studies go, they come out so fast that no one really can track them all. That's simply because there's so much money in getting a drug like a statin approved for as many health problems as possible. To be honest, I don't buy into all of the studies I've seen and that's why there aren't many on this site. Read them all and you wonder why we need any other drugs since statins seem to be good for everything that can ever go wrong with the human body. <g> My advice is to get another opinion, keep reading, keep asking questions, keep helping your dad - because you are, you know. Arrogance or a short temper are very bad qualities in a heart doc and you've brought both to light in his current doc.
     Assuming that he agrees, get that next heart doc as soon as possible to start building a good relationship with him. Jon.

Jon R, August 30, 2006 - Hi, I went to my new PCP for my first check up. I received a vaccination for pneumonia and a hepatitis B test. I was confused about the "hep b" test and asked why? On one of my first trips to the emergency room, one of the docs labeled me as an IV drug user! I nervously laughed and told them they had the wrong guy! They said it was probably a good idea to get it anyway.
     On to my real question, I have still been having upper respiratory problems. I have started helping manage my girlfriend's bar while she gets ready to have the baby. The second hand smoke is really starting to take its toll. I have a sampler of Advair Diskus 100/50 given to me by a former PCP. The cardiology nurse said they have other patients on this and not to worry. I only inhale one dose a day or not, depending on how I feel.
     I have read a little about Advair and did not like what I found. I am a little concerned about my Coreg (6.25mg twice a day) and Lisinopril (5mg). Every time I call the Heart Failure Center I feel as though I am bothering them. This dosn't stop me though!
     I think I am going to change hospitals since I am not happy with my treatment. How safe is it to take the Advair when needed? I won't take it more than once a day, don't like the side affects. Any advice? I don't see a pulmonologist until Sept 21st.
Jon's note: Hi Jon, Personally, I wouldn't take it. It can screw up your potassium level and may compete with Coreg for receptors. See the lung doc for sure.

Mike H, August 30, 2006 - Hello, I posted the question about whether or not to get a heart transplant done last week. Well, I was approved by the commitee last Friday morning. So on Saturday I decided that I would enjoy a nice dinner, which I did. Then the phone rang about 9 PM saying they had a heart. I really thouht someone was playing a very sick joke. I was flabbergasted because it did not even take barely a full day!
     Anyway, it was what they call a "dry run" (because something was wrong with the heart) so it did not go through but I was still in the operating room ready to go. It was very overwhelming but I am actually glad it happened because practice makes perfect.

Jon, August 30, 2006 - Hi everyone, Sorry about not being online yesterday, but the doubled painkiller dose made me sleep most of the day. I feel fine with it today. This is normal for me - a one day adjustment period to big dose changes. Jon.

Linda K's August 31 reply to Ben B's August 28, 2006 - Hi, When I first landed in the hospital, nobody ever once mentioned anything about life expectancy, but they did mention the possibility of needing a transplant somewhere down the road. I did not find it calming in the least. Personally, I think they tell you that to scare the bejeebers out of you so you'll take care of the heart you've got!

Jerry C, August 31, 2006 - Hi, I have severe shortness of breath with any exertion. Sitting or lying I have no problems. I have worked with cardiologists for several years and had just about every test imaginable and they still can't figure out why the shortness of breath. I just yesterday had a 64 slice CT scan. The cardiologist went over it with me and said that all my arteries were clear, my valves were functioning well and my heart overall was in excellent shape. My lungs are working fine and all of my internal organs are in fine shape, but I still have the shortness of breath.
     Does anyone have any experience with this type of problem? Is it possibly tied to medications? I take Diovan, Vytorin, warfarin, and aciphex. I am 79 years old.

Jack D's August 31 reply to Jon's August 30, 2006 - Man, What a time event to have this specific subject come up. My mother is being medicated by a moron. Since she lives so far away I do my meddling vicariously through my sister. My mom is on Vytorin. Vytorin is a combination of Zocor and Zetia and it is the very worst cholesterol-lowering drug on the market. It reduces serum ubiquinone more than any other drug.
     Now, I figured it was just the Zocor being the bad guy so I consulted a specific person that I consult. It turns out that zetia is the extra bug in this ointment. The e-mail reply said, "CoQ10, Vitamin E, lycopene and beta carotene levels were also decreased with Zetia." So Serena, don't look to the doctor for quality advice.
     Now on to my own mother. I still can't get a straight answer, but she has lymphedema and has been on furosemide for 10 years to help this even though diuretics do nothing for lymphedema and even increase the blood protein level for persons with this problem. She has diabetes and with it the frequent urination so the doc prescribed her Detrol so she don't "gottago." She also has not been given an ACE inhibitor to protect her kidneys from the high glucose and the doc said she might prescribe an ARB sometime in the future but never an ACE inhibitor. She was recently in the hospital where they advised her to go to a kidney specialist.

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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