September 1-15, 2004 Archive Index CHFpatients.com

Lydia Moore 9-1     Coreg & muscle pain questions
 
Jon's 9-1 reply to Lydia Moore's 9-1     Coreg & muscle pain
 
Tod 9-1     found Oklahoma program to help me
 
Bernidette M 9-1     seek CHF doc in Roseville, California, USA
 
Kim's 9-1 reply to Jacky's 8-30     Lipitor story in press
 
Andy 9-1     statin, gallstones questions
 
Jon's 9-1 reply to Andy's 9-1     sort of a general rant here
 
Scott Brown's 9-1 reply to Madeline's 8-30     my experience, question
 
Pam's 9-2 reply to Jon's 9-1     question on statins for healthy people
 
Jon's 9-2 reply to Pam's 9-2     I really don't know
 
Marty 9-2     old timers, faith, obssessing - questions
 
Jon's 9-2 reply to Marty's 9-2     old timers, faith, obssessing
 
Madeline 9-2     thank you all
 
Cathy 9-2     my dad died
 
Valerie R 9-2     hurricanes
 
Chuck's 9-3 reply to Marty's 9-2     worrying is pointless
 
Joseph P 9-3     seek online billing resources
 
Nancy's 9-3 reply to Ron's 8-31     constant yawning
 
Ruthie A's 9-3 reply to Marty's 9-2     coping with illness, things to remember
 
Barb N's 9-3 reply to Pam's 9-2     statins, cholesterol, inflammation
 
David Wilson 9-3     statins, weight loss
 
Michelle 9-3     disability, difficulty breathing & more
 
Jon's 9-3 reply to Michelle's 9-3     disability, difficulty breathing
 
Carla 9-3     resolving feelings about misdiagnosis
 
Blanche's 9-3 reply to Cathy's 9-2     condolences
 
Sandy 9-3     enjoy life
 
Kim's 9-3 reply to Andy's 9-1     cholesterol levels & more
 
Jon 9-3     some posts will be late
 
Sandy's 9-4 reply to Valerie R's 9-2     keeping on
 
Greta's 9-4 reply to Marty's 9-2     book suggestion for everyone
 
Annie G's 9-4 reply to Marty's 9-2     people can do okay with heart failure
 
Bill 9-4     how do I describe this?
 
Jon's 9-4 reply to Bill's 9-4     fatigue hangover
 
Sandy 9-4     questions on sodium intake
 
Sandy's 9-4 reply to Marty's 9-2     living with illness
 
Jack D's 9-4 reply to Marty's 9-2     getting on with it all
 
Norma's 9-4 reply to Marty's 9-2     it's not the end
 
Margaret D 9-4     EF up but heart even larger - anyone else?
 
Roger 9-4     update, blood work
 
Valerie R's 9-4 reply to Ron's 8-31     yawing all the time
 
Richard 9-5     seek Milrinone experiences
 
Pam's 9-5 reply to Barb N's 9-4     cholesterol, statins, CoQ10 question
 
Pam's 9-5 reply to Greta's 9-4     excellent suggestion
 
Pat H's 9-5 reply to Valerie R's 9-4     chronic yawning and Coreg dose
 
Nancy S 9-5     venting and a prayer request
 
Marty 9-5     thank you
 
Janet 9-5     BNP test questions
 
Jon's 9-5 reply to Janet's 9-5     BNP testing to monitor CHF
 
Clara D's 9-5 reply to Sandy's 9-4     low sodium eating
 
Clara D 9-5     thank you all for help with bread
 
Hal 9-5     Medicare expenses
 
Sandy's 9-5 reply to Carla's 9-3     I know what you mean
 
Roger's 9-5 reply to Marty's 9-2     eating low sodium, faith works
 
Eileen 9-5     seek help in Phoenix, Arizona area
 
Valerie R's 9-5 reply to Sandy's 9-4     surviving storms
 
Miriam 9-5     faintness, seek Altace experiences
 
Vicki J 9-6     seek others with esophageal spasms
 
Nancy S' 9-6 reply to Jon's 9-5     eplerenone versus spironolactone
 
Lori K's 9-6 reply to Marty's 9-2     long-time CHF survivor
 
John 9-6     really need some suggestions
 
Miriam 9-6     could be dehydration
 
Pam's 9-6 reply to John's 9-6     online resources
 
Robert 9-6     can dobutamine be outpatient?
 
Myrtle C 9-6     would eplerenone help me?
 
Jon's 9-6 reply to Myrtle C's 9-6     possibilities
 
Myrtle C 9-6     seek supplement doses to take
 
Jon's 9-6 reply to Myrtle C's 9-6     taurine and L-carnitine doses
 
Mary Anne 9-6     which drug is likely to be causing pain?
 
Tinu 9-7     my LVAD experience & more
 
Margaret D's 9-7 reply to Mary Anne's 9-6     could be potassium
 
Denny 9-7     online bulk source for L-carnitine
 
Scott Brown's 9-7 reply to Eileen's 9-5     making Coreg less expensive
 
Charles 9-8     hurricanes, tests & more
 
Shellie W 9-8     what can we do for my dad?
 
Jon's 9-8 reply to Shellie W's 9-8     getting rid of fluid
 
Art 9-8     seek Natrecor experiences
 
Carla's 9-8 reply to Jack D's 9-4     appreciated the post
 
Mary Anne 9-8     switching beta-blockers
 
Jacky 9-9     update
 
Joe 9-9     introduction
 
Charles 9-9     update, muscle cramps
 
Marty C 9-9     seek ideas about this chest pain
 
Paul 9-9     is this worsening heart failure?
 
Giorg C 9-9     does my ICD need reprogramming?
 
Jennifer B 9-9     seek CHF doc in Birmingham, Alabama, USA
 
Scott Brown's 9-9 reply to Shellie's 9-8     your dad and his denial
 
Sandy 9-9     device implant upcoming
 
Sherry 9-9     what questions do I ask tomorrow?
 
Jon's 9-9 reply to Sherry's 9-9     a start
 
Ottye 9-10     is anyone else always cold?
 
Greta's 9-10 reply to Sherry's 9-9     he needs a diuretic
 
Greta's 9-10 reply to Paul's 9-9     tests questions & more
 
Joseph P 9-10     ICD & external defib question
 
Shellie's 9-10 reply to Jon's 9-9     will ask the doc these things
 
Barbara P's 9-10 reply to Marty C's 9-9     ICD & chest pain experience
 
Norma 9-10     seek erythromycin-heart meds experiences
 
Roger 9-10     blood test results & more
 
Jeff Anderson's 9-10 reply to Sandy's 9-9     device implant experience
 
Dale E 9-11     what should we do for my dad?
 
Bea's 9-11 reply to Eileen's 9-5     seek CHF doc near Safford, Arizona, USA
 
Sherry 9-11     update, thank you & more
 
Sandy's 9-11 reply to Jeff Anderson's 9-10     thank you for your experience
 
Amy 9-11     surgery coming up
 
Charlotte's 9-11 reply to Jennifer B's 9-9     satisfied with UAB docs
 
Lydia M 9-11     seek arthritis experiences
 
Joy 9-11     stress test didn't go well & more
 
Lorraine's 9-11 reply to Richard's 9-5     Primacor experience (inotropes)
 
Ann L 9-13     what happened to me?
 
Jon's 9-13 reply to Ann L's 9-13     anemia and bowel preps
 
Ann's 9-13 reply to Sherry's 9-11     PVCs & slow heart rate experience
 
Susan B's 9-13 reply to Dale E's 9-11     the right doctor is critical
 
Marty 9-13     chest pain, painkillers questions
 
Jon's 9-13 reply to Marty's 9-13     chest pain, painkillers
 
Sandy's 9-13 reply to Amy's 9-11     best wishes
 
Vicki J's 9-13 reply to Sandy's 9-9     ICD implant experience
 
James 9-13     erythromycin article
 
Ruthie A's 9-13 reply to Lydia M's 9-11     drugs for meds for arthritis experience
 
Shane 9-13     seek heart transplant experiences
 
Lori K 9-14     seek bread recipes
 
Jack D's 9-14 reply to Jon's 9-13     narcotics' effects
 
Jon's 9-14 reply to Jack D's 9-14     narcotics' effects
 
Sandra 9-14     disability reviews and more
 
Jon's 9-14 reply to Sandra's 9-14     disability reviews
 
Elka's 9-14 reply to Shane's 9-13     heart transplant experience
 
Giorg 9-14     why not stay on diuretics?
 
Jon's 9-14 reply to Giorg's 9-14     diuretics
 
Carla's 9-14 reply to Shane's 9-13     why transplant?
 
Pat Y 9-14     far infrared therapy?
 
Greta 9-14     consulting pharmacists may help
 
Kathy H 9-15     rheumatoid arthritis, meds, heart questions
 
Lori K 9-15     seek HFSA meeting info
 
Michelle's 9-15 reply to Shane's 9-13     heart transplant experience
 
Betty 9-15     seek allergic reaction to ACE inhibitor experiences
 
Nancy S' 9-15 reply to Sandra's 9-14     looking good but feeling bad
 
Susan 9-15     seek EF experiences
 
Donna V 9-15     getting a pacemaker, seek experiences
 
Donna H 9-15     heart transplant evaluation experience
 
Giorg 9-15     seek ICD experiences
 
Jon's 9-15 reply to Giorg's 9-15     ICD forum may help
 
Clara D's 9-15 reply to Lori K's 9-14     bread recipes
 
Scott Brown's 9-15 reply to Giorg's 9-14     diuretic use
 
Scott Brown's 9-15 reply to Sandra's 9-14     chest pain and looking ill
 
Paul's 9-15 reply to Greta's 9-14     just hit an energy low
 
John W 9-15     update - doctors, quick question
 
Jon's 9-15 reply to John W's 9-15     all those letters after the doctor's name
 

Lydia Moore, September 1, 2004 - Hi Jon, How are you? It has been awhile since I have been here, due to a lot of family dysfunction going on. It has definitely wiped me out. I have had my Coreg increased another 12.5mg in July. Do you know how long it takes to adjust to a Coreg increase? I know some people cannot tolerate it, but I want to get the full benefit. I have been having a lot of leg muscle pains. Is this just another detail that goes with the territory? I would really love your or anybody's input. God bless you and your ministry. Lydia Moore. Flanders48@msn.com

Jon's September 1 reply to Lydia Moore's September 1, 2004 - Hi Lydia, From what I hear and have experienced myself, it can take from one week to 2 months to really adjust to a Coreg dose increase, with 2 to 4 weeks being usual. Muscle pain should be studied by your cardiologist to make sure it is not caused by improper electrolyte levels or by one of your meds like a statin cholesterol drug or Coreg itself. If not, you should talk to your general care doc about it.
     I'm doing as well as can be expected - sometimes much better than I think I should and sometimes much worse. It's mainly just plain frustrating never knowing how you'll feel tomorrow, if you know what I mean. <g> Jon.

Tod, September 1, 2004 - Hi, Well, good news. I found what I'm looking for. There is a program in my state additional to Medicaid called Sooner Care and I will qualify as Aged, Blind, or Disabled (ABD) and not receiving Medicare, once I get my final approval from the regional SSA office. toder@azalea.net

Bernidette M, September 1, 2004 - Hi all, This is my first post but I have been here often since being diagnosed with CHF. I need your help finding a good CHF doctor in the Roseville, California area. Thank you for any help you can give me. This is a great site. blmartin@starstream.net

Kim's September 1 reply to Jacky's September 30, 2004 - Hi Jacky, Merck just did a major story on Lipitor which was published in the New York Times yesterday. The findings were that it did not protect from heart attack as previously thought. My doc has me on Pravachol to slow down atherosclerosis, although there's still debate as to whether this will work. I'm willing to bet as long as I don't develop side effects. Kim. KimCaroline@aol.com

Andy, September 1, 2004 - Hi, It's probably just a coincidence but I was just diagnosed with gallstones and an inflamed gallbladder. I was diagnosed with idiopathic DCM 9 months ago. I'm male, 40, normal weight. I realize that gallstones can hit anyone but this still seems very off to me, especially given that I live/eat the textbook "how not to get gallstones" life style. I was started on statins 4 months ago even though my cholesterol levels were very good (110 total) due to new research my doctor was participating in indicating positive EF improvement with statin use.
     Does anyone have any thoughts, info or ideas on this, and if there could possibly be a connection between the gallbladder inflammation (and liver connection) and the statins? They have been monitoring my blood work, and my liver seems fine. Andy@mrdatacorp.com

Jon's September 1 reply to Andy's September 1, 2004 - Hi Andy, I don't have any connections to make. However, since statins have been a topic here lately, I thought I'd pull a Jon and say what's on my mind. <g>
     Many "studies" done on statin use are not trials. They are statistical analyses of trials done for some other drug or condition. These analyses look over older data and then extract trends and results not included in the original trial endpoints. This is useless for drawing conclusions, in my opinion. It can be useful for showing what trials need to be done, but to state positive conclusions from such studies really bothers me.
     Sooo, I don't believe statins are nearly as wonderful as all these studies say they are. In fact, I think they are massively overprescribed, often for very poor and inappropriate reasons by indiscriminate doctors. I worry about potential future side effects in people who don't really need the drugs and I refuse to take one unless I have a serious cholesterol level problem, which I do not currently have.
     Whew, do I have opinions, or what?! ;-) Jon.

Scott Brown's September 1 reply to Madeline's August 30, 2004 - Hi Madeline, As you will gather from reading Jon's pages, an EF of 15% can apparently feel near-normal, while other people with the same EF (or better) could feel absolutely tragic.
     How did the doctor end up examining you for CHF? Were there some symptoms you were noticing like shortness of breath or swelling (edema)?
     In general, an EF below 25% requires close scrutiny. Frankly, I am surprised that the Coreg has not caused more problems than making you a little sleepier in the morning. Even if the cause of your CHF is a virus, there is a good possibility your heart could improve.
     I have been living with my CHF diagnosis for about 4 years. My EF (23%) has not improved but it has not gotten worse either. Most importantly, I feel much better as long as I balance my diuretic with my fluid and sodium intake, and keep my electrolytes right. I still have blood circulation issues lying down, have to prop up my head on the pillow at night, feel really tired throughout some days, cannot carry things for as long as I used to (like my daughter), etc. However, overall, life is much better than when I was dizzy (like when I started my meds), short of breath, experiencing chest pains, etc.
     Be cautious, but the symptoms of heart failure do not always spell an unhappy lifestyle. Best of luck. Scott Brown. Kitchenerguy@rogers.com

Pam's September 2 reply to Jon's September 1, 2004 - Hi all, My father has CHF so I read this site daily and find your positive outlook so inspirational! After Dad's bypass I saw a cardiologist for a baseline. My heart looked good but I started taking bisoprolol for borderline (140/90) high blood pressure. At the time my C-Reative Protein (CRP) was high but we didn't discuss treatment. This year my cholesterol is up (222) and my CRP is still over 4 (high), so the doc suggested I start 20mg of Zocor.
     I have read everything I can find and there's not a lot of clear cut data out there for "otherwise healthy" people. It is difficult for me to determine what makes sense in terms of prevention. I live a heart healthy lifestyle, exercise vigorously and maintain an appropriate body mass index. The doc's opinion is that genetics is driving my high cholesterol and CRP levels. Since increased CRP (not associated with infection or trauma) seems to be a good indicator of a possible cardiovascular event, I'm wondering what my future holds.
     I'm not excited about taking more drugs but statins have been shown to reduce these risk factors. So far, I'm not having any side effects and am scheduled for more blood work in October. Does anyone else fit into this "otherwise healthy" category. What's your opinion on prevention and medication? pam_smallwood@yahoo.com

- Jon's September 2 reply to Pam's September 2, 2004 - Hi Pam, I just haven't researched this group so I can't say. Regarding CHFers, when I first saw my current CHF doc, he immediately stopped 2 of my meds, including a statin. He said that a person who doesn't have a clear need for a prescription drug shouldn't take it. We get along fine. <g> Jon.

Marty, September 2, 2004 - Hi Jon, I know that God has not given us the spirit of fear, but I am struggling with it. I am a believer and I know that Christ defeated death on the cross. Still, I know that God initially wired us with a very strong survival instinct and aversion to death. Here's why I'm writing.
     The Air Force was nice enough to give me a whole month off after the pericardial effusion from the initial ICD implant subsequent to my recent heart failure and LBBB diagnosis. Maybe this has been too much time for me to ponder my mortality at age 43 with four kids. I've read every word I could find on this site and while I've found comfort in the compassion and cameraderie of this group, I've also had some problems.
     Have I crossed the line between trying to educate myself and fixating on this illness? It just seems like you're the only long-term survivor here, and that so many of the people who completed bios are conspicuously missing updates if they were diagnosed more than 4 to 5 years ago. I just want some hope and I am realizing that hope must come from God. Losing my younger brother less than two years ago to this rotten illness has weakened my faith, I must admit.
     I'll stop there and just ask the question I started out wanting to ask you: Have you considered a hall of fame section where people who have survived CHF for more than 5 to 10 years can be featured and share? God bless you, Jon. Marty. marty.culleton@rs.af.mil

Jon's September 2 reply to Marty's September 2, 2004 - Hi Marty, Nope. To do so now would guarantee a lot of people initially joining it and then never updating it - for the same reason those bios suffer from a lack of updates. People who do well don't come back and update their information - they're too busy living. That's also why so few long-time CHFers post here on a regular basis. Why should they when they feel pretty good and have things to do? ;-)
     I get e-mail from quite a few "old-timers" but it's often something specific. Two such people run another heart forum and web site actually (Lee and Ginger), at Heart-help.net. Don Gazzaniga runs a low-sodium cookbook site, Pete runs the Healthy Heart Market, and Jack helps his wife run a multitude of small business ventures. It's hard to remember to come back and update a bio you wrote back when you were much sicker, now that you are back in the saddle.
     I find myself wondering though, why your brother's death lessens your faith. You said he did just about everything "wrong" once he was diagnosed. I do not mean to demean him or belittle his death, but he sort of helped himself along the path to getting worse, didn't he? Maybe I misunderstood.
     Christ defeated death, not the pain of life. He and His apostles are quite clear that life is going to be hard - usually harder for believers than for non-believers. He also said not to let this rattle our cage. Paul sums it up nicely in 2nd Corinthians 4:8-9 "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed." It isn't easy and it never will be in this life but the peace Jesus offers and freely gives is a prize worth seeking always.
     Whether you are "obssessing" or just being thorough is for you to decide. I have to say though that if you have really read every word on this site you may be approaching that line - there are a lot of words around here! <g> The real question to consider is, "How do you feel ?" This is far more important than most CHFers realize. In general, the better you feel, the better you will do. So stop and smell some roses, and if you feel pretty good, do it more often. Jon.

Madeline, September 2, 2004 - I want to say thanks so much to everyone that took the time to reply to my first ever post on a message board. I truly appreciate all the posts and e-mails. It helps to know that there are many of us in the same boat. It will make my journey through this a whole lot easier knowing there are great folks out there that care and are dealing with the same thing. Also, thanks for all the work that has to go into maintaining such a useful web site. Just for your information, I am tentatively scheduled for the biventricular pacemaker surgery on September 30. I will let you know for sure. Thanks again, Madeline. mdaugherty@rphnc.com

Cathy, September 2, 2004 - Hi, I thought I'd let you all know, since I have ranted a few times about my dad, that he passed away this week from advanced mesothelioma. Although he was also suffering from CHF, his heart was strong to the last and it was a fight to the finish. He never smoked or drank. He was a health nut way before it was cool. My dad desperately did not want to die and tried everything medicine offered. Unfortunately, asbestos did him in anyway. georgecd@worldnet.att.net

Valerie, September 2, 2004 - Hi, I am just checking in. I survived hurricane Andrew with my husband, 2 birds, and 2 dogs in a closet, although the house was 85% destroyed. Now I'm here for Frances. It's a lousy way to spend a Labor Day weekend!
     This time we have hurricane shutters that are much better than plywood from last time, and I'm pretty prepared. Needless to say, the phone is ringing off the hook with people wanting us to get out and come to them. How? Over a million are being evacuated I hear, and Charley didn't leave a lot of hotel space, etc. They have asked people to stay off the roads going north. We filled our cars but the lines now are really long, if one can find a gas station open at all.
     I'm prepared. I even have a tranquilizer to give my Wheatie dog who suffers during a rainstorm! My big concern is humidity. Last time we lost electricity and phone for well over a month and the mosquitos were terrible. If that happens again, I will most certainly be leaving for awhile, but after the storm. I also wish we had a three-car garage but, oh well. vgrogers@aol.com

Chuck's September 3 reply to Marty's September 2, 2004 - Hi, Worrying about the future is pointless, Marty. All it does it stress you even more. When I start worrying, I eventually come to think "What am I going to do?" The funny thing is, I already have the answer to that question. Do what your doctor tells you (after you find a good one), and take Jon's advice as it applies to you. javabeans@av-geeks.com

Joseph P, September 3, 2004 - Hi, How is everyone? My question is, does anyone know a web site that a person can go to, to see if his Medicare medical bill is being processed? I don't know if I have to pay or if they have already paid some of my bill. Thanks, Joseph P. joeandol@shawneelink.net

Nancy's September 3 reply to Ron's August 31, 2004 - Hi Ron, Before I was diagnosed I also yawned all the time. My EF was about 25% and I believe that is your body's way of trying to take deeper breaths to take in more oxygen. I think you'll find if your heart starts functioning better that you will stop the constant yawning. Nancy. ns1@alltel.net

Ruthie A's September 3 reply to Marty's September 2, 2004 - Hi Marty, I am one of those old-timers that Jon referred to. I was diagnosed with CHF nearly 7 years ago and I feel pretty good - as long as I take care of myself and watch my sodium and fluid intakes. I don't post very often, though I do read the posts here regularly. I have begun my own small business which is doing well and I am preparing to get both of my knees replaced so I can begin exercising again. In other words, I am rather busy these days.
     I do understand what you are experiencing. Fear is a natural emotion and is a normal part of adjusting to our diagnosis. Having a relative die from this horrible condition doesn't help, no matter why and how he died but you need to remember that God has not fallen off His throne. He is still in control of the universe and He is not surprised by what is happening to you. I can only suggest that you throw yourself into His arms for mercy and comfort. It is the only way you will get the peace you need and the only way you will be able to continue on with the life you still have.
     Remember Marty, your life has not ended - it has just changed. Take the information you have gotten from your reading and apply it to your own care. Get on with living rather than focusing on your mortality. As time passes, if you do your best to take care of yourself, you will discover that the fear is fading away to nothing and that your life has become much fuller and more enriched. Remember to balance your reading, though, with living. Life isn't found in words, but in your family, your church, your job, your friends, and your Lord.
     Always feel free to post here with questions or if you need to vent. Ruthie A. rlaba51@yahoo.com

Barb N's September 3 reply to Pam's September 2, 2004 - Hi, One key risk factor for CAD seems to be HDL to LDL ratio, particularly very low density LDL, rather than total cholesterol. If your total cholesterol is 222 and HDL is 70 or more - probably no problem. If you have HDL less than 35 and particularly elevated VLDL (very low density lipoproteins) there may be more reason for concern and taking a statin. The statins also show different activity combating inflammation. Increased C-reactive protein is considered to indicate inflammation. There is some recent work showing Lipitor a more effective statin compared to Zocor for inflammation in addition to lowering cholesterol. Ironically, this study was funded by the company making Zocor not Lipitor, so I'm inclined to believe it more. Make sure your doctor is looking at the HDL to LDL ratio before deciding if a statin is necessary and that (if he picks a statin) it is the most effective choice. If you do take a statin, supplemental CoQ10 is probably a good idea. Good luck! protoplasm2@aol.com

David Wilson, September 3, 2004 - Hi, I am putting in my two cents on the statin issue. I have tried two statins, lopid and Baycol. I was allergic to lopid and the FDA in America took Baycol off the market. I refuse to try any other statins. I don't think they are helpful to me - my cholesterol is in the normal range. Losing weight seems to help my cholesterol more than drugs anyway.
     I have lost 109 pounds since my weight-loss surgery last October and 150 pounds since diagnosis 4 years ago. I have gotten off 2 of my heart meds and feel lots better. Losing weight along with Coreg has done wonders for me. My EF bounces around. It has gone from 14 to 24 to 40 then back to 25 and now it is 32%. I think losing weight just makes it easier on our weak hearts and makes it easier to exercise, which seems to help a lot. davybwilon@webtv.net
 
Jon's note: Regular exercise and activity make a huge improvement in most people's cholesterol - a frustrating fact for us CHFers.

Michelle, September 3, 2004 - Hi everone, Well, I am back. My sister's cancer surgery went well and I have been helping her out since she got out of the hospital. Needless to say, I am kind of wiped out. Today I decided that it would be much easier for me to bring all her laundry back here and do it at my own pace in the comfort of my own surroundings. She has been very, very crabby and hard to deal with but I know she will get better since they got all the cancer!
     I have a couple of questions about Coreg again. I have been moved up to 6.5mg twice a day and have had some effects. Has anyone experienced itching of the ankles and feet from this? Also, I get this kind of rotten feeling of suffocating. I know I am breathing and I know I am not having asthma, and I know there is plenty of air, but I just can't explain it any other way than a suffocating feeling - like all the air in the world is not going to make a difference. I yawn and yawn and yawn and eventually I just go lie down for awhile. It usually passes in a couple of hours. I don't know if this is from the Coreg or from the PH.
     Also I need to know what steps to take to see about getting put on Social Security. My work comp case has come to an end. My former employer says they will not hire me back because of my limitations. I am 44, have diabetes, heart failure and pulmonary hypertension. I am afraid I can't always work the way I used to do. I don't know if I can keep up with an attendance policy when I feel so rotten a lot of the time!
     I am starting to panic because my Cobra Insurance runs out in March. I pay about 440 dollars US a month for it, including my copayments for all the medicine I take. What do I say to the doctors so they don't think I am just not wanting to go back to work? I sorely regretted going to their work comp doctors (they sent me themselves) because I was off work for a long time and had many surgeries on my hands, which are as far as I am concerned not helping all that much. Now they won't give me my job back and I have to find something else! I am so frustrated I could just scream.
     Well, I guess I am ranting and going on a bit tooo much, but I appreciate being able to vent and ask. I hope everyone is doing alright out there and thank you for being back. escomeesh@hotmail.com

Jon's September 3 reply to Michelle's September 3, 2004 - Hi Michelle, You should definitely apply for SSD immediately. Call Social Security. You can get contact information for them at www.ssa.gov/reach.htm. You can also just go to your local SSA office and pick up forms or have them take the necessary information while you're there. I recommend taking home the forms so if you forget something one day you have the chance to add it to the form before mailing it or taking it back in a few days.
     Are you having a sort of feeling of no oxygen in the air you breathe? This can come from fluid in the lungs or in the liver, or from the constriction caused by PH. Your diuretic dose may need adjustment. Dietary sodium intake must also remain restricted. Has your weight gone up lately?
     Coreg dose increases can cause increased fluid retention, making breathing seem this way. If it doesn't improve as you remain on the current Coreg dose for a week or two, talk to your doctor in case it is the PH. Jon.

Carla, September 3, 2004 - Hi, I just wanted to let you all know that after 9 months of finally cooling off, I've contacted my local hospital regarding the misdiagnosis of my condition. For 2 years, they continued to throw their hands up as to why I couldn't adjust to blood pressure medication changes necessary for pregnancy. They even took a chest x-ray when I appeared to have severe asthma/bronchitus and swelling, and missed the fact that my heart was enlarged. I'm not sure what will happen now and I'm not looking for anything since a lawsuit and a settlement would not heal my heart and the loss of the dream of being a mom someday. However, I just don't want them to blow off another "young" person when they know something's not right! carla@cnbt.com
 
Jon's note: This is why the BNP blood test is so great - it's a quick and easy way to spot CHF even for doctors too dense to recognize heart failure when it looks them in the face. Remind the hospital how many lawsuits using this test could save them in years to come so they push doctors to use it!

Blanche's September 3 reply to Cathy's September 2, 2004 - Dear Cathy, My deep condolences. bna104@msn.com

Sandy, September 3, 2004 - Hi Everyone, "Life should not be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming woo hoo, what a ride!" I'm sitting here today, waiting for yet another hurricane. Charley went over my head and now Frances is scooting by. Be safe all that are in her path. bleuskiiisgrl@yahoo.com

Kim's September 3 reply to Andy's September 1, 2004 - Hi Andy, I was diagnosed October of 2003 with DCM and CHF. In May the pain in my side finally became apparent to my PCP to be my gallbladder. I had my gallbladder removed laparoscopically and they way overloaded the fluids - I gained 10 lbs overnight. It took more than a few days to recover - I would say about 3 weeks total.
     The surgeon looked at my ultrasounds from October and the recent ones, and concluded that the congestion in my liver was also present in my gallbladder. I did not have gallstones but my gallbladder was basically not functioning. They measured EF too and mine was so low that it came out one week later. I guess my point is that fluid can get everywhere.
     Everyone told me to eat low fat. My question to them was how much fast food and pizza did they think I could eat on a low sodium diet? Sometimes doctors are just obtuse. I am very careful about sodium, fat, additives, etc. I think that another interesting fact is that the inflammation caused by CHF can cause elevated cholesterol numbers and you should be tested at least 6 weeks after symptoms abate. That was from a nutritionist. My cholesterol went up 50 points after my diagnosis. This may be normal and I did not change my eating habits or anything else.
     Good luck with everything. I tend to agree with Jon and his doc that if you do not need an Rx med, why take it? The side effects and unknowns make me skeptical. Kmwilczewski@msn.com

Jon, September 3, 2004 - Hi everyone, If you don't see your post, don't get upset - I am not going to get them all done tonight. I'll play catchup tomorrow, though. Jon.

Sandy's September 4 reply to Valerie R's September 2, 2004 - Hi Valerie, You're a pretty stong person. I have talked to many people who survived hurricane Andrew almost the same way you did, and they packed up and moved and are now living in Pembroke Pines, Florida. Did you stay and fix your house? We are just getting winds and rain from hurricane Frances. Thank goodness! Good luck to you. bleuskiiisgrl@yahoo.com

Greta's September 4 reply to Marty's September 2, 2004 - Hello Marty, May I suggest that you read "The Purpose Driven Life" by Rick Warren. You may have seen it on the shelves at Wal-Mart or another bookstore. I have read the book, and am reading it again as we are studying from it at church on Wednesday nights. There is so much valuable information in this book. Rick Warren was truly inspired with the Holy Spirit. The inspirations in this book have helped me tremendously. It helps you to see things from a much better perspective.
     There are 40 chapters that are to be read over a 40 day period. I found it very hard not to plunge ahead and read more than one chapter per day. Doing it the suggested way helps you to focus on that chapter. I even read the same chapter on the same day more than once.
     Read it and I am very sure it will be of great value to you. Keep me posted via the message board or e-mail me personally and let me know if you read it and what you thought about it. This is recommended reading for everyone. God bless, Greta. gjohnson@arkansas.net

Annie G's September 4 reply to Marty's September 2, 2004 - Hi Marty, I'm a "loved one" but to let you know, I've been coming and reading for 6 years since my then-46-year-old husband got his diagnosis with 3 teenagers and an EF of 13 to 15% in heart class 3 going to 4.
     His last EF was about 45%. He has been back to work full time for about 2-1/2 years working 12 hour rotating shifts. Is everything easy? No. Does he have a good life? You better believe he does and my kids have a father I never thought they'd have because when he was first diagnosed I never thought he'd live this long.
     You do have to have faith and do everything within your power to improve your quality of life, including low sodium diet, exercise, no alcohol and no smoking. Keep the faith, people can do okay with CHF. Annie. annieg129@cogeco.ca

Bill, September 4, 2004 - Hi, I started cardic rehab 3 weeks ago and I feel really good while I'm working out. I can see improvement in my stamina while I exercise, but I really suffer from being very tired for a day or so afterward. The problem comes when I try to explain how I feel. It doesn't matter if it's the nurse or doctor, I get the same confused look. They have no idea and I can't seem to explain it well enough to get them to understand. I've printed some from The Manual but it doesn't make much difference. Does anyone have any suggestions? bj5250@yahoo.com

Jon's September 4 reply to Bill's September 4, 2004 - Hi Bill, My heart failure specialist calls this "fatigue hangover." No one who doesn't have CHF is really going to understand it. It usually strikes one to two days after extended exertion and it doesn't let go of you till it's good and ready no matter what you do. Short bursts of activity like weight lifting don't do this to you as badly but you still get a taste of it. Jon.

Sandy, September 4, 2004 - Hi Everyone, I've been posting on the board since being diagnosed with CHF last January. I've learned a lot from all your posts and also from Jon. What I would like to know is, what sodium intake is best to control this illness? My doctor said 2000 to 3000mg is good but I "feel" bad when I consume this much. I'm doing all I can to keep it under 1000mg but it is hard with the foods on the market. I cook everything that goes into my body except bread and that is next. What I'd love right now is a good hard salami hoagie! <g> Is everyone finding it hard to controll your salt intake? Thanks! bleuskiiisgrl@yahoo.com
 
Jon's note: 2000mg daily is the max while 1500 is what I would recommend. Even healthy people are only supposed to eat 2400mg daily! Your doctor is nuts.

Sandy's September 4 reply to Marty's September 2, 2004 - Hi Marty, I think it's a great idea - a hall of fame for 5 plus years survivors of CHF. I also sometimes think much too hard with death and dying facing me much too early! I was diagnosed this past January. However, after thinking more, I find myself thankful for my kids and life. I outlived my 43 year old older brother, who died of a heart attack. Like you, I sit still and just watch my family, knowing how much I'll miss them but then I tell myself, "Hey, I'm still here!" and continue with my day. We have so much more living to do. We have to shut down our minds sometimes! Good luck to you. bleuskiiisgrl@yahoo.com

Jack D's September 4 reply to Marty's September 2, 2004 - Oh Marty, You shouldn't have put yourself out there for us surviving old-timers - or at least this surviving old-timer - to sink their fangs into you. You can read my bio and my first update. I should give another update now.
     I had an unexpected relapse a couple of years ago where my EF sank again but it's probably tied to all the other medical problems I have. I'm now physically much worse off than I was in the beginning but I'm still here. That's inconsequential. I read the board every day and I chime in for special things like a little humor, new tidbits of information and (most important) when it seems somebody needs a kick in the butt. You rang? You got it dude.
     You're fixating. My first year was spent in a daze, sleeping or lost. I was furious. But once you get it through your head that the plan for everybody is "you live for awhile and then you die" and then move on to doing all the things that you are still able to do and screaming about the ones you can't do anymore, then maybe you can quit feeling sorry for yourself and start to live again. Oh, did I mention that I'm blunt? Just think of me as Dr Phil with hair.
     I found myself sitting on the porch snivelling (all alone) one day and I really disgusted myself. As Arnold would say, "Don't be a girlie-man." Looking back on it all I figure that I really "died" the very day I was diagnosed. Everything after that is frosting on the cake and I get to spend my days griping about all the other things that need to be griped about, like politics, taxes, food prices, Ted Koppel's hair, crummy TV shows and other people's kids. Once you start paying attention to all those really important things you won't have the time or the energy to sing "Po, Po, Pitiful Me."
     Now I can just imagine all the comments saying how insensitive I am. Oh well, if I don't offend somebody every day then I should have stayed in bed. You can either get over it yourself or you can ask the doctor to give you pills so you won't be able to think properly. I prefer "in pain" to stoned. maddjak@hotmail.com

Norma's September 4 reply to Marty's September 2, 2004 - Hi Marty, I think all of us here have suffered from fear at one time or another. You just have to fight and pray through it, plus take the occasional tranquilizer on really bad days! This is my seventh year since being diagnosed with CHF and DCM and although I still have an EF of 15 to 20%, I lead a pretty normal life. My condition has not deteriorated and my medication has remained the same. Take heart Marty, this is not a death sentence, just a wake up call to take better care of yourself. Good luck, Norma. normadroz@aol.com

Margaret D, September 4, 2004 - Hi everyone, I have a question. Has anyone with DCM experienced an improvement in their EF without a decrease in left ventricular size? I was diagnosed at 15% EF two years ago and gradually rose to 45%, but my left ventricle is larger than it has ever been, at 6.5 or 6.6. My feeling is that the EF will eventually start falling again as it can't keep up the work. I felt no better at all either, until my Coreg was cut in half. I now have at least 25% more energy than I did, and feel actually good some days! I shoud mention that I have been on oxygen at night for a year now. There is hope folks! mdavis10@tampabay.rr.com
 
Jon's note: I am in a remarkably similar situation.

Roger, September 4, 2004 - Hi, I had some blood drawn prior to seeing my PCP on Wednesday and will get more of the story then. For now I found that my total cholestorol was 174 with LDL 121 and HDL 39 and trigycerides 70 with an A1c of 6.1%. The nurse said the doctor was pleased. I didn't find the sodium or potassium so I'll ask Wednesday. I also had a BNP and a urine test. rkharmony@highstream.net

Valerie R's September 4 reply to Ron's September 31, 2004 - Hi Ron, I have an EF of 10%, diagnosed in 1995 with IDCM. I yawn all the time too. It's difficult with other people - they think they are boring me. I can't seem to help it. I find I yawn more when I'm not busy and active. Thankfully, we in Miami are still waiting for the slow-moving hurricane. It looks like we've missed the worst of it, but it will hit us sometime this afternoon. The electricity has not gone out and I'm very grateful for that. vgrogers@aol.com

Richard, September 5, 2004 - Hi, I have been advised by one doctor to go on Milrinone (Primacor), while another says I'm not bad enough. Can anyone out there discuss the medicine, effects, infusion or whatever? usntiger@aol.com

Pam's September 5 reply to Barb N's September 4, 2004 - Thanks, Barb. Here are the rest of my numbers: Triglygerides 77 (range 0 to 149), HDL 88 (range 40 to 59), LDL 119 (range 0 to 99), and VLDL 15 (range 5 to 40). My risk ratio is 2.5 (range 0 to 4.4). My HDL is high because I exercise like crazy. My triglycerides reflect the mostly heart-healthy diet I follow. Both my LDL and total cholesterol have been creeping up. That, coupled with the high CRP made my cardiologist and PCP recommend Zocor. I think they were on the fence before.
     The trend seems to be to treat anyone who has total cholesterol over 200. For some it's therapeutic and others preventative. Not that I totally agree with this thinking but I decided to try Zocor and see if it has a positive impact. It seems to be a reasonably safe drug. My sense is that I could do without it but I'll give it a try and see what happens. I'll have to ask about Lipitor.
     Another aside is that my iron panel runs high. Testing ruled out hemochromatosis. The hematologist said to take iron-free multi-vitamins and keep an eye on it. Otherwise, I see no worries. I do take 30mg of CoQ10. Is there a recommended dose? Thanks for the input. pam_smallwood@yahoo.com
 
Jon's note: I would recommend one mg CoQ10 per one lb of body weight.

Pam's September 5 reply to Greta's September 4, 2004 - Yes! Everyone should read "The Purpose Driven Life" by Rick Warren. Great suggestion, Greta. I keep the Daily Inspiration manual in my car and read a page before I go to the office. It gives me a morsel to reflect on throughout the day. pam_smallwood@yahoo.com

Pat H's September 5 reply to Valerie R's September 4, 2004 - Hi, I yawned all the time until my Coreg dose was cut. I still yawn, but not as much. I just figure it is the old bod trying to grab some extra oxygen. Pat. mondays_child_1@yahoo.com

Nancy, September 5, 2004 - Hi all, I'm really in need of cheering up today. I went to the doctor the other day knowing that I wasn't feeling quite as well as I had been. My EF is back down from 55 to 35% and I'm having problems with edema and sleeplessness again. Today I went outside to plant some things in my gardens and after I dug holes and planted 8 daylilies I had to stop. I was so depressed I just sat down and cried. In the spring I could get out there and work for several hours and not really be any more tired than before I got CHF.
     Anyway, the doctor said that my heart is still weak and there's not anything they can do. My blood pressure is so low that they can't increase my Prinivil and Coreg past the minimum dosages and I really need it increased. I'd love it if you will all pray for me to not be so depressed and to feel better again. Thank you all for just being here and listening. I'm sorry for being the sadsack! I hope you are all well and I keep you in my prayers. Once again Jon, thank you for providing a space for us to come together. Nancy. ns1@alltel.net
 
Jon's note: Have you considered taking eplerenone?

Marty, September 5, 2004 - Wow, I sure didn't expect so many responses to my last post. It has been a great encouragement to hear from all of you out there who have hung in there with this illness for a long time. Thank you so much for your insightful advice. I'll do my best to apply it and not allow self-pity to take control. In Proverbs 11:14 it says "Without good direction, people lose their way; the more wise counsel you follow, the better your chances." I'm so thankful for this site and for each of you - even you, Jack - it stung a little, but you were right on! <g> Marty. marty.culleton@rs.af.mil

Janet, September 5, 2004 - Hi, I have a question about the BNP test (B-type Natriuretic Peptide). I read through the information on this site and I'm confused about a couple of points. It sounds like a great way to diagnosis CHF but I'm wondering about ongoing monitoring of CHF and especially our class levels. If medications change BNP levels then it sounds like once you are medicated it's no longer much use to us. Is that correct? I'm trying to drop off meds this fall and I'm wondering if my doctor could monitor BNP blood levels for follow-up versus more frequent echos or MUGAs. janetca1@msn.com

Jon's September 5 reply to Janet's September 5, 2004 - Hi Janet, When the heart is stressed it enlarges and the pressures of the cardiovascular system and the heart usually increase. It is primarily these two factors that raise BNP blood level. This means that once your BNP is high, you already are suffering from increased heart pressures and heart size. That makes it useful for monitoring but only with very regular testing. However, it would certainly be less expensive than regular imaging tests.
     Since meds lower these pressures and reduce heart size (hopefully), they do reduce BNP's usefulness in monitoring CHFers. Daily weighing and consciously being alert for recurring heart failure symptoms are actually pretty good ways to spot most decompensation, but sometimes it sneaks up on us no matter what.
     I realize you know this but feel obligated to say it anyway - the official treatment guidelines call for CHFers to remain on ACE inhibitors and beta-blockers for life, regardless of heart function improvement. Jon.

Clara D's September 5 reply to Sandy's September 4, 2004 - Hi Sandy, Hang in there. It isn't easy to limit sodium intake. It changes so much in our lives. Traveling isn't as much fun if you can't eat the local specialities and you feel like such a wet blanket when visiting family and friends. I even miss fast food, especially the convenience of it!
     On the positive side, food does eventually begin to taste decent without added salt and I tend to eat a more balanced diet now. Eventually, normal food even begins to taste too salty!
     I feel much better when I keep my sodium intake well under 1000mg per day. It has been easier to do that since I started baking my own bread a year ago, and the bread I bake tastes so much better than the frozen salt-free breads I've bought from health food stores. If you have time, you might want to try it. A bread making machine makes it a lot easier. Good luck, Clara. jdossett@nc.rr.com

Clara D, September 5, 2004 - Hi everyone, Many thanks to those who came to my rescue both online and offline when I asked for salt-free bread machine recipes. You're the greatest! My fears about dough oozing out of the machine without salt to inhibit the rise were unfounded. I've now tried several recipes and they have all turned out great. The machine makes the whole process so much easier. Thanks again, Clara. jdossett@nc.rr.com

Hal, September 5, 2004 - Yeeyoow! Medicare premiums up 17%, isn't that special?! That raises my deductable to pretty much guarantee I pay it all. That's so special, isn't it? Our disabilty payments rose 4% in two years and premiums rose only 30%. What a wonderful system of starving folks to death. I'll bet next year it raises 25%. uncahal@webtv.net

Sandy's September 5 reply to Clara D's September 5, 2004 - Hi Carla, I completely understand your feelings about being "Miss Diagnosed." I thought I had asthma. Two different doctors gave me all sorts of meds until the day came when walking up the stairs was so hard, it scared me right into the ER. Hopefully one day, doctors will take a little time to look into the cause of our complaints. I'm glad your okay now! bleuskiiisgrl@yahoo.com

Roger's September 5 reply to Marty's September 2, 2004 - Hi, It seems like a lot started for me in 1989 when I had my first heart attack and triple bypass. I suppose I should have been a little scared anyway, but I wasn't. It was like the Lord put it on my heart that He would always be with me. It sounds dumb maybe, hard to explain to even Christians - everyone said you had to be scared! I had the total peace that only the Lord gives.
     Five years ago I was diagnosed as type 2 diabetic and I was walking every day and had good numbers for cholestorol and the whole 9 yards. I told my wife I will never go through a bypass again. Then in June of 2001 I had another heart attack and this time had a double bypass and we knew more of what to expect. I hadn't figured on having yet another attack on the table and as a result I ended up with CHF.
     I had modified my life before and now I had another modification. I was told at the hospital I could have 2000mg sodium daily, which I started at 1800 and was still gaining 2 lbs a day. I have worked my way down now to 300mg per day and can go 7 to 10 days without a water pill. I make most of the things I eat from scratch, including bread. It is very rough to eat out anywhere. God still has control! Doctors think my very positive attitude has done me good, but I tell them the Lord is with me.
     I had told you of my blood work, but forgot to say that this week I went to the eye specialist. In 1995 he had to use laser treatment because I had blood pooling in the back of my eye and was losing vision. Two years ago he said I had cataracts forming. This week he asked how long I've been a diabetic and I said going on 5 years. He told me keep up what ever I'm doing because there are now no signs of any cataracts - miracles do happen! rkharmony@highstream.net

Eileen, September 5, 2004 - Hi, Does anyone know of a program for cardiomyopathy patients in the Phoenix, Arizona, USA area? My husband Jon and I moved here from Illinois last fall. We have a very limited income as he is on disability and I am too ill to work myself right now. We have no insurance and he has not seen a cardiologist here yet. He's being stubborn because the cheapest would be $175 per visit!
     We make too much money (yeah, right!) to qualify for state aid, yet we are below the poverty level! It's so frustrating and I don't want to lose him any sooner than I have to! Does anyone even have any suggestions for how to find out these things? We go to a subsidized clinic with a very overworked doctor who never follows through on anything he says he will do. We can barely afford Coreg and we get it at Costco.
     Any help or suggestions would be appreciated because I feel at the end of my rope some days!Thanks so much, Eileen Westcot. rescuekees@aol.com

Valerie R's September 5 reply to Sandy's September 4, 2004 - Hi Sandy, We did stay to fix our house but our contractor ran off with most of the money. It was hard. Everyone, thank you for you thoughts and prayers. We hardly had anything here in South Miami. Even better, we have not lost power! Everything is easier when it's cool. Those north of us are not so lucky but still survived better than any of us if the storm had been a 5. We've opened some of the shutters but will keep the hard ones up for awhile. They are already tracking Ivan, but my solution was to turn the television off. ;-) vgrogers@aol.com

Miriam, September 5, 2004 - Hi, I have been lurking around Jon's Place for a long time. I have leaking valves (severe regurgitation of the aortic, mitral, and tricuspid valves - probably from rheumatic fever years ago) that have not yet been repaired. My cardiologist tells me that I should wait for surgery until I have symptoms or my once a year echo shows left ventricular dysfunction.
     I feel pretty good. I teach full-time at a community college and I take bumetamide and of course, watch my sodium intake and exercise. About a year ago my doctor started me on Altace (the lowest dose of 2.5mg) to prevent any remodeling of the heart. My blood pressure is very low but the Altace didn't seem to bother me until recently. I've been having difficulty when I get out of my car (my commute to work is long) and I often have to sit down on the curb and put my head down so as not to faint. Now, if I turn my head quickly or turn around after writing on the blackboard, I feel faint.
     I'm planning on phoning my doctor but I was wondering if anyone else has experienced this with Altace and if so, what have they done to alleviate these symptoms? I don't want to stop taking the Altace but I also don't like this dizziness. My blood pressure has been fairly consistent, 90/60, the same it has been for most of my adult life. Thanks for any advice. I hope everyone has a nice end of summer holiday. Miriam. miriamstclair@msn.com
 
Jon's note: You're not dehydrated lately, are you?

Vicki J, September 6, 2004 - Hi, Does anyone here have esophageal spasms in addition to CHF? Mine are so painful that my CHF doc gave me Stadol nasal spray, which is a narcotic. I don't like using it but it has been a life saver for the pain. My GI doc has me on the latest meds but they don't seem to help with the spasms. I know that you can stretch the esophagus but it doesn't last. My pain is like getting hit in the chest with a baseball bat and lasts for 45 minutes - with the Stadol it only last 15 minutes. The pain doesn't even compare to labor pains - at least they come in waves, while this is constant pain. Any suggestions would be greatly appreciated. I don't know what causes these but stress is a contributing factor, though not always present. vj6464@aol.com

Nancy S' September 6 reply to Jon's September 5, 2004 - Hi Jon, Is eplerenone basically the same as spironolactone? If it is, I do take 25mg daily of that. If not, I'll discuss it with my doctor and see what he thinks. Thank you for the advice. Nancy. ns1@alltel.net
 
Jon's note: It's similar but has far fewer side effects even though taken at a higher dose. Prayers you've got!

Lori K's September 6 reply to Marty's September 2, 2004 - Hi Marty, You probably feel satisfied with the responses you already have, but I thought I would add one more experience for you. After reviewing my very large stack of "old" echoes (back to 1983), my CHF doc concluded I had cardiomyopathy at the age of 27 in 1988 and my first bout of CHF in 1992, which landed me in the hospital; and that I was treated improperly and basically missed. Luckily, my EF returned to normal despite lack of appropriate drugs.
     I then went into a downward spiral after giving birth to my son in 1998 and it still wasn't caught until 2 years later at my routine echo! So to cut to the chase, I have had DCM for what appears to be 16 years with my CHF symptoms being present the last few years to a much greater extreme. My EF is 47% now, and I take a day at a time and try not to think about it more than I have to.
     I eat very low sodium and exercise when I am up to it. Keep a positive outlook, and just go on with your life, making the adjustment you need to make. Like Jack said, I could have died way back in the 1980s and figure I am so lucky to have endured all this and still function! Keep your chin up and take a day at a time. You can live a long time with this disease, you just have to come to terms with the adjustments you have to make, and help others understand. That to me is the tough one! Take care, Lori K. thegoof86d@aol.com

John, September 6, 2004 - Hi, I'm new to this board. In fact, I'm kind of new to this whole CHF experience. My father (age 88 on the 9th) has heart failure and has been happily going about his business that way for about 4 years, but, alas, times change. About a month ago, I decided to quit work and spend days at his house. About 2 weeks ago I moved in. Today, I made sure that my wife covered for me while I snuck out for a shower and a quick session on the Net to write this. To be blunt, this seems to be a tight downward spiral. Just about the time I kicked his edema by getting the water pills changed, he started losing steam.
     I am a mechanic by trade with no background in health care. Talk about a trial by fire. Any information on what to expect and how to improve quality of care will be appreciated. I will get your letters quickly, but my answers will be slow because the computer is at my home - not his. Thanks in advance. jpwisniewski@comcast.net

Miriam, September 6, 2004 - Hi Jon, I think you're right! I'll watch the hydration and see what happens. I'm glad I wrote in. It is so easy to overlook something as important as dehydration when you're thinking it's something terrible. Thanks! miriamstclair@msn.com

Pam's September 6 reply to John's September 6, 2004 - Hi John, You have found a wonderful group of folks. I can highly recommend hospice as a source of support. They are very skilled at helping you manage end-of-life care. I'm not sure your dad is at that point but thought I would pass on this idea. Many people are afraid of hospice but this organization is truly focused giving you the best quality of life during the time you have left. It is better to connect with a hospice early so that you can fully utilize their services. Many provide care regardless of ability to pay. A web site that gives you an idea of what you might expect is www.houstonhospice.org. For more ideas, see National Health Links on the Links page under the Resources tab at www.tnpha.org. There are non-profit hospices across the country. You can locate services at www.nhpco.org/templates/1/homepage.cfm. ElderCare is government sponsored and provides information on support in your zip code: www.eldercare.gov/Eldercare/Public/Home.asp.
     Focus on one day at a time, especially when you feel overwhelmed. It is a wonderful gift that you can devote yourself to caring for your dad. pam_smallwood@yahoo.com

Robert, September 6, 2004 - Hi, My doc is considering IV dobutamine for me, yet I'm told that I must go into the hospital for it and I do not want to do that. I was diagnosed with CHF about 10 months ago but must have had it a long time. Is there a way I can take dobutamine as an outpatient? hawkdog86@aol.com

Myrtle C, September 6, 2004 - Hi, I need information and can't find it on the site. As I am not on any meds for heart failure except Lasix and potassium, I do not feel well. Coreg caused me to fall back into depression. Other meds like ACE inhibitors, and ARBs like Diovan and Micardis, have had side effects that I couldn't tolerate. Jon, I read where you suggested eplerenone for a person. I tried to find info on it but don't know if this is something I might ask my doctor about. I don't have another appointment until November but I do need help since I can do little or nothing before the symptoms appear, and then I am down for the count. God bless you and all of us striving to overcome. Use my omie at axs4u dot net e-mail address if anyone wants to e-mail me. Thanks! omieof3@yahoo.com

Jon's September 6 reply to Myrtle C's September 6, 2004 - Hi Myrtle, I am sorry to hear you're not doing well. Eplerenone is an aldosterone blocker similar to spironolactone (Aldactone) but without all the side effects. It is sold under the brand name Inspra. It's expensive, but being a person who had side effects with spironolactone, I'm all for this drug instead. <g> You can find onsite info about it at www.chfpatients.com/meds.htm#epleronone, www.chfpatients.com/meds.htm#blocking_aldosterone, and www.chfpatients.com/text/aldosterone_antagonists_2001.txt. If you already take spironolactone, you can just stick with that if you don't get unpleasant side effects.
     CHFers who don't tolerate ACE inhibitors and beta-blockers might consider the drugs that were used before the newer meds became available. That is what is suggested in the official treatment guidelines. The older drugs are hydralazine and nitrates (like isosorbide dinitrate). Digoxin (Lanoxin) might also be considered to make you feel better. If your heart failure is really severe, inotropes may be considered, but they are an IV-only drug class. I hope it helps. Jon.

Myrtle C, September 6, 2004 - Hi, I was looking for info on taurine and L-Carnitine as to what dose to take. I tried to find the info on your web site, Jon. My ministry has changed since I cannot be active out of my home and I now encourage, listen, love, and bring Jesus to others who have heart failure or families who are having loved ones dying from this. Jesus does find a way to use us. My prayers go out for all. omieof3@yahoo.com

Jon's September 6 reply to Myrtle C's September 6, 2004 - Hi Myrtle, I recommend one gram taurine 3 times a day, although up to 5 grams a day is fine. If your L-carnitine is over the counter, I recommend roughly 500mg three to four times a day. If your L-carnitine is prescription (my CHF doc prescribes Carnitor for me at my request), I recommend 330 to 660mg a day with food. Jon.

Mary Anne, September 6, 2004 - Hi, I started taking Coreg July 9th at a dose of 3.125mg twice a day, then upped to 6.25mg twice a day on July 28th. Shortly before this, I was changed from Zoloft to Lexapro for depression. I have had a lot of muscular pain since I changed these meds. Is it more likely the Coreg or the Lexapro? I hear Coreg is the greatest thing since sliced bread, but I'd happily go back to Toprol-XL to lose these pains. Any comments appreciated. mameredith@nauticom.net
 
Jon's note: In my non-doctorly opinion, Coreg is more likely to be the culprit, but for you, it could also be this specific meds combination rather than one.

Tinu, September 7, 2004 - Hi Everyone, How're you all doing? I've posted a couple of times since I stumbled upon this amazing web site when i was first diagnosed with CHF in May 2002 but I read all the other posts constantly. I just want to share my experience with you.
     It's actually a miracle I am still alive today, this is one thing I know only God can do. I've always adjusted well to my meds since I was diagnosed, I was working and studying despite the CHF and only had occassional bad days. My meds were Coreg, Lasix, Coumadin, iron, Aldactone and Altace but I clearly avoided activities like climbing stairs or running.
     I suddenly developed pulmonary hypertension in September of 2003 that was caused by the heart failure. I had a couple of fainting episodes and shortness of breath. I was implanted with an ICD and the fainting stopped but the other symthoms got worse and things didn't get better. Finally, my cardiologist decided the only way to go was to be evaluated for a heart and lung transplant. I started the process - all the blood work and tests - and by this time I could hardly take a shower on my own, keep food down, walk a block, or even sleep.
     In January of 2004, I went for another routine test and I wasn't allowed to go back home, the pressure in my lungs were so high that the doctors feared I wouldn't last the week. A decision was quickly made and I got implanted with an LVAD. During the surgery, I developed some complications and my right ventricular system totally collapsed so I had to be implanted with a right assist device as well, and I fell into a coma which lasted 8 weeks. During this time, everybody had almost given up hope and plans for my burial were actually being thought about. I am sure you can imagine how truamatic this period must have been for my family. I am just 24 years old with no kids yet, just my husband, my mum and my siblings.
     The right assist device was removed while I was still in the coma and miraculously I began to respond to treatment. I finally opened my eyes in March of 2004. I stayed in the hospital till May and I was allowed to go home as I got better every day. I have been home since then and there have been a lot of differences in my life. Now, to say this was easy would be the biggest lie. I had to learn how to walk, talk, write, eat, etc,..., all over again. I developed some nasty sores which have just healed and am always aware of the fact that I have a device inside of me that's noisy. Everybody around me keeps wondering where that thumping sound is coming from, especially in the elevator. <g> I have to carry a bag everywhere I go where I put my batteries and controllers.
     All I can say is that it's been worth it. The pressures in my lungs have reduced so much so that I won't be needing a lung transplant anymore. I can cook, clean, and do basically anything around the house now. I go for 30 minute walks every day and am going back to school part-time this fall. My recovery has been amazing and I can honestly say I have the best team of surgeons, cardiologists, and nurses anyone can ever wish for at the Toronto General Hospital, considering I wasn't even born in Canada, I just migrated here years ago.
     Mind you, nobody in my family has ever had heart disease. I was the most healthy person for the first 21 years of my life. I was actually a runner for my high school. No one knows the cause of my CHF but the docs say it was a virus. Anyway, right now I am still on the transplant list waiting for a new heart and I have high priority because of this device, so anytime soon it is going to be time and I know God's going to see me through once again. I am actually looking forward to it with a lot of hope and optimism so I can get back to living my life fully once again, have kids, travel, etc. That's how much faith I have in God.
     I just wanted to share this with you guys because I know we all need constant encouragement and this site really helped me at the beginning, knowing I wasn't alone in this. Also, there's nothing better than knowing you have Jesus to call upon anytime and knowing He would always be there for you. I still have some bad days where I lose my appetite and just feel tired, but overall I feel better than I have in years. I take just 40mg of Lasix daily now unlike before when I took 200mg and I don't use all my old meds anymore - just the Lasix, Coreg and two new ones.
     I am trying to put on some weight now. My doc says its okay because I lost so much during surgery. Any tips on gaining weight on a diet without salt, too much sugar and cholestorol, would be great.
     If anyone has any questions about LVADs, please feel free to ask me but I can only give answers based on my own experience. I met another guy that was implanted with the same LVAD and he was out of the hospital two weeks after his surgery and he's doing amazingly well now. He even goes to the gym and all that, so it works for different people different ways.
     I gotta go now. Thanks everyone for giving me a medium to share my story. Thanks Jon, for putting this all together. God bless. Bye now, Tinu. tinsan02@yahoo.ca

Margaret D's September 7 reply to Mary Anne's September 6, 2004 - Hi, I would think it wouldn't be either drug. Are you on diuretics? Have you had your electrolytes checked lately? Your potassium may be off and that can cause similar problems. Sometimes they forget to order the routine bloodwork. I hope this helps. mdavis10@tampabay.rr.com

Denny, September 7, 2004 - Hi, I sent Myrtle this information in an e-mail but then decided it could be of intrest to many people who are now, or are considering, taking L-Carnitine. The site www.bulknutrition.com/?cPath=108 sells it in bulk and is much less expensive than in capsules. DMoen58@hotmail.com

Scott Brown's September 7 reply to Eileen's September 5, 2004 - Hello Eileen, If the cost of Coreg is the primary issue, I would recommend pricing the drug through Canada. I live in Canada and would be happy to follow up on the legitimacy of any Internet site you might find. There is a generic version of Coreg which has recently become available in Canada, further lowering the cost of this medication. My cardiologist is 100% sure the generic (made by Apotex) is identical to the original. It looks like the going web price for generic Coreg (carvedilol) is $100 for one hundred 25mg pills. I assume that is US dollars but not all state that. I think you can still find cheaper because I pay substantially less.
     Another idea: With Coreg, 100 tablets of 25mg Coreg generally cost the same as 100 tablets of 6.25mg. If your husband takes less than 25mg, your doctor may be able to prescribe the 25mg with the understanding you will split the pills with a pill-splitter. Just a few ideas that might help, Scott Brown. kitchenerguy@rogers.com

Charles, September 8, 2004 - Hi, Here in the panhandle we escaped another hurricane. I went for my first followup to my new Mobile CHF cardiologist today and found that I had lost 7 pounds and dropped my blood pressure about 20 points. My doc would have been delighted if he had been there - he left sick this morning and my phone has been out since Sunday night.
     I asked for my blood work stats and they never received any info from the chain lab in Crestview that poked me 3 weeks ago! The Physician's Assistant gave me some lisinopril (ACE inhibitor) to try. I took this drug in 20mg units for years before my heart attack in November.
     I have had no problems adjusting from 12.5mg Coreg twice a day to 25mg twice a day. In fact, I feel the best I have felt all summer, along with new increased torsemide (Demadex) to 50mg a day (100s split in half). I take 100mg CoQ10 per day. I have now added taurine and L-carnitine and hawthorne. I am using the biofeedback device called Resperate three times a week to slow my breathing and lower blood pressure, and I have gone back to water aerobics. I will carpe the diem or die trying. b4dlens@yahoo.com
 
Jon's note: Be sure and get some new blood work!

Shellie W, September 8, 2004 - First off, thank you for this wonderful site. I wish you all the best of well wishes. I am writing this because I'm seeking help for my father. He is 59 years old and was diagnosed 5 years ago with heart failure. He also has had type II diabetes for the past 14 years. Here is a little of his story.
     He has always been a very noncompliant patient. He has a very type A personality. He has to be in charge of every situation with no exceptions. He wants to be in charge of his own health. He recently had a mild heart attack. After some pleading, we finally got him to go to the emergency room. He acted absolutely crazy while he was there. He wouldn't wear his heart monitor, he pulled out his IV line, refused to wear a hospital gown - you get the idea. This was a small town hospital and it was suggested that he go to a larger one. Once he arrived, the cardiologist came to see him. He told him that he has a lot of extra fluid on him, his BUN and creatine were high, and he was anemic. Dad checked himself out of the hospital against medical advice. The cardiologist told him basically that was the silliest thing he'd ever heard of. Dad refuses to get a stress test done because he heard it could kill you.
     He is currently taking Lopressor and Lasix. We can't tell him he's taking Lasix because he says diabetics cannot ever take it because it will kill their kidneys. We are almost certain he has a lot of kidney damage but we can't find out because Dad won't stay in the hospital long enough to find out. Well, we did find out he has at least 22 lbs of water on him now. He is 6feet 4 inches tall and weighs about 275 lbs. He's now telling me that he is going to stop taking his water pill because it's making him sick to his stomach. This has been a constant fight with him.
     He's always been a very strong man and now he is so weak. He's homebound mostly because his diabetes has left him nearly blind so he can't drive or barely walk without assistance. He swears we are trying to kill him and make something be wrong with him if we even mention going to the hospital. My poor mom is so stressed. We really don't know what to do at this point. What do you do when someone is in such deep denial?
     I'm afraid he's going to die if he stops taking the Lasix. I don't even know if Lasix causes stomach burning problems. Also, is falling asleep constantly while sitting up common? He's forever doing the head bobbing thing. Is there anything stronger than Lasix? If he doesn't get the water off, will he wind up on dialysis?
     I know this is a lot of questions, but each one is so important to us right now. We don't know what else to do at this point. shellie@cleburne.com

Jon's September 8 reply to Shellie W's September 8, 2004 - Hi Shellie, Whether your dad will do any of the following I don't know. However, when a person is scared, they often act defiant to deny their own fear. You might try addressing the root fear - the fear of dying - and see if he will help plan his own therapy with preventing death as the goal. If that doesn't work, try another route, maybe quality of life concerns. Just don't write off his ability to change - people surprise people all the time - so don't give up.
     People often don't understand the basics of controlling fluid retention. I will give a short "talk" on it here for you, but you will not understand what to do for your dad unless you read more information on it. Don't just read The Manual - also follow the links in its text whenever you don't understand that text.
     Getting rid of retained fluid requires a 3-step approach. First, low-sodium diet is critical. All the diuretics in the world will fail if he eats a diet high in sodium every day. There are lots of good recipes (if I do say so myself) at Let's Cook!
     Second, aggressive meds therapy for his heart failure is needed. If the load on his heart and the pressures causing that load are not improved, you're fighting a losing battle with diuretics. His heart size also needs to return as closely to normal as possible. This means switching him to Coreg from Lopressor (metoprolol) and if that is not possible, then hopefully switching him to Toprol-XL, which is a more effective kind of Lopressor - sort of. Also, Toprol-XL is once-a-day so maybe that would help his frustration level. It also means getting him on an ACE inhibitor if he is not on one. I recommend Monopril specifcally because it is easier on his kidneys. Both his beta-blocker and his ACE inhibitor need to be raised to target dose for best effect. If he can afford it, eplerenone is also a good idea. I do not recommend spironolactone for him because the risk of side effects is too high for someone very touchy about side effects.
     Third, and last since it is meant to treat symptoms (edema) rather than addressing the causes of retained fluid, is a diuretic. The Manual lists the 3 usual loop diuretics and their potency relative to one another. Taking one does mean regular blood tests or side effects are likely and likely to be serious.
     Best wishes. Jon.

Art, September 8, 2004 - Hi, I recently went from a class 2 to a class 3 CHF classification. I have dyspnea upon mild exertion and my cardiologist suggested that I get an infusion of Natrecor (nesiritide). I would like to know if anyone out there that has received this infusion, and if it was beneficial for you? It appears to be somewhat of a long procedure, preferably 3 times a week lasting approximately 4 hours per session. Any and all feedback would be appreciated. Aenaval@aol.comJon.

Carla's September 8 reply to Jack D's September 4, 2004 - Hi Jack, Thanks for the swift kick. No kidding, we all need it from time to time. We can beat this digusting illness! carla@cnbt.com

Mary Anne, September 8, 2004 - Hi, I met with my cardio doc today. He says it won't be a problem to go back to Toprol-XL while weaning off Coreg, one tab per day for a week, then stopping Coreg completely. He said he's not heard of muscle pain being related to Coreg and I said, "Anything can cause anything" and I believe that is especially true of meds. If it proves not to be the cause of my problems, I'm willing to go back to Coreg and look elsewhere for answers. Thanks for the input, Jon. mameredith@mmp.nauticom.net
 
Jon's note: One to two percent of Coreg trial patients suffered muscle cramps so it's a safe bet some would have called the effect pain rather than cramps. That number is from the Coreg package insert from Glaxo-SmithKline, 2003. It's a small probability but it does exist.

Jacky, September 9, 2004 - Hi, This is a follow-up to my other message. I saw my PCP today and she says the cardiologist must have misunderstood when saying my problems were not connected with cardiomyopathy. She put me back on Lipitor because my symptoms are not the usual side effects. She also says to raise my Coreg dose back to 25mg twice a day as this is the best way to extend life with cardiomyopathy. She did say that anything below 12.5mg twice a day was not as effective. She has just come back from a cardiology conference and this was one of the conclusions.
     She also said that LDL needs to be well below 100 and blood pressure treated even if just associated with "white coat" hypertension regardless of what it is at home. I am just glad there are no other problems - no more tests! For some reason this all reassures me. I will relax and handle the problems. jackymwb@earthlink.net

Joe, September 9, 2004 - Hi, I'm a rookie CHFer. I was diagnosed with this illness on May 5th, 2004. My EF is 35% and have an enlarged heart along with a LBBB. I'm on 6.25mg Coreg and take it three times a day. I also take 5mg Altace twice a day and spironolactone 25mg once a day and 325mg of Ecotrin a day. Like most people I keep my sodium at 2000mg daily or below and limit my fluids to 64 oz a day.
     I'm 47 years old and I used to work out 3 to 4 days a week. Last year I decided to go back to school to earn my P.E. degree, then this happens. I enjoy this web site very much. It's good to know there are people out there at my age or younger with heart failure too. I feel pretty good during the day and early afternoon but late afternoon and early evening I start going downhill. Then late at night I'm totally worn out. I think the only side effects I feel are my legs are real cool to the touch. I can only sleep on my right side at night without feeling uncomfortable. I'm glad my wife found this site for me. Goodbye for now. JVodenichar@traid.rr.com

Charles, September 9, 2004 - Thanks Jon, They took more blood before I left the clinic and the original drawing lab claim they had faxed my lab tests August 23rd, so I am still looking for the culprit in misplaced results. Upon arriving home from Mobile, I discovered the physician's assistant who saw me in lieu of the sick cardiologist gave me 5mg Altace instead of lisinopril. I noted your advisory of Monopril being easier on the kidneys and will mention it next time, since my kidneys show some signs of damage.
     Regarding Coreg-related muscle cramps, I frequently suffer foot cramps early in the morning and did so long before beginning Coreg or having a heart attack. I take quinine and Pot-klor and have told every doctor I have ever seen but nobody has ever figured out how to stop them, or why they come. Hurricane Ivan haas just risen to class 5 and looms for us poor Floridians. Once more, dear friends, into the breach! Willy the Shake(speare). b4dlens@yahoo.com

Marty C, September 9, 2004 - Good day everyone, Please shoot me any advice you can on unexplained chest pain. After having an ICD implanted one month ago, I had a pericardial effusion and they had to replace the leads. I've been gradually improving over this past month, but this past Sunday I woke up with sharp chest pain in my right chest whenever I took more than shallow breaths. I took a lot of Tylenol that day with no improvement. My doc says no to NSAIDs due to my DCM. I ended up in the ER Monday morning. They did the usual tests and the echo did show a small amount of blood still in my heart but the cardiology team ruled that out as a problem based on amount. The other tests were okay, which is great, but no answer to my chest pain.
     My cardiologist ordered a contrast CT scan, which also came back completely normal. My BNP is only 88, and I'll also take that! So what in the world is making it hurt so badly to take big breaths? Is Coreg a possible culprit? I sure hope not! My cardiologist is down to either pleurisy or costochondritis, both of which call for NSAIDs that he refuses to give me. This pain is very sharp and I'm concerned. Please share your collective wisdom one more time with me. God bless all of you. Marty. marty.culleton@rs.af.mil
 
Jon's note: It might be costochondritis, which I've had. That's a terrible pain. It really helps to have nerve blocks if that's what it is, but make sure they don't load you up with too much cortisone in the same injections with the local anesthetic. The injections are painful but they work like nobody's business.

Paul, September 9, 2004 - Hi, I have had idiopathic cardiomyopathy for 5 years now but lately I have been feeling more tired and out of breath. Is this typical of this disease, that you slowly run out of steam? Paul. paulox20032003@yahoo.ca

Giorg C, September 9, 2004 - Hi, I got strongly shocked by my ICD because of a v-tach whose rhythm was not so fast, about 215 bpm. My doctor said it's okay. I am not a doctor but I am not sure wheter v-tach like that one should be cured like a-fib. I would prefer to avoid big shocks if it is possible. I am pretty sure this time a couple of low shocks would have been enough to stop the arrhythmia. What do you guys think? Thank you. giorgclunei@hotmail.com

Jennifer B, September 9, 2004 - Hi, I have a question for those who live in Birmingham, Alabama. I'm having a hard time finding a doctor who specializes, or is at least familiar enough to effectively treat, cardiomyopathy and heart failure. I'd love to hear from you if you can direct me to a heart specialist in the Birmingham area. Thanks a bunch! jennifer@doublegates.com

Scott Brown's September 9 reply to Shellie's September 8, 2004 - Hi Shellie, Let me begin by saying I understand your pain in this situation 100%. Everyone cares so much about your dad's welfare. On the other hand, your dad continues the denial. Jon's advice is 100% correct in covering the basics. Also, your dad is likely much more tired due to the heart failure. It is very telling that your father was diagnosed 5 years ago and is not yet on the medication which may have prevented a heart attack. The meds that Jon described will almost certainly make him feel much better over the long haul although over the short haul, he may experience some side effects until his body adjusts.
     Unfortunately, as much as your family cares about your father, you are likely not the people he is going to listen to. Your dad needs the facts and he needs someone to give him the straight goods. A good cardiologist is usually a good person for this task. I wonder if your family doctor help if you expressed your concerns.
     There are hundreds of people on this site who know exactly how he feels. The fact is that when your dad starts feeling lousy enough, he might just start to listen. That is part of what smartened my 59-year-old father up. As long as he feels well enough to get by, he can continue to live in denial.
     Feel free to e-mail me. I have been down this road before. As a side recommendation, get rid of all packaged and canned soup in the house. Hopefully, your dad will not miss it. There very few things as blatantly bad for your dad as canned soup. That's something you do have control over. Good luck. Scott Brown. kitchenerguy@rogers.com

Sandy, September 9, 2004 - Hi Everyone, I'm going in the hospital on the 17th to have "Ventricular Resynchronization Therapy" for CRT. My doctor is inserting an ICD/pacemaker. I'm scared and I'm also grateful, to be able to have this opportunity. My brother might be alive today if he had this chance. He died in 1986 at 43 years of age. It's scary to think that I'm 14 years older than my "older" brother!
     We have a new hurricane coming to Florida Sunday named Ivan. I just hope it stays away from the Clearwater/Tampa, Florida, USA area so it does not blow away the hospital. Wish me luck, all! bleuskiiisgrl@yahoo.com

Sherry, September 9, 2004 - Hi all, On July 29, 2004 my husband was to have knee surgery. The day of the surgery, the hospital called and cancelled it because on July 28 of 2004 they faxed the EKG that was performed two weeks before to our primary care physician. He did not request the EKG, the orthopedic surgeon did. The PCP refused to approve the surgery. One thing led to another and on August 17th, a cardiologist did a cath.
     I am so new to this and the information on the Net is massive so I need help in what questions to ask the cardiologist. Thanks to this site we requested our family doctor to schedule an appointment with a CHF specialist. However, it is scheduled for October 13th of 2004. The cardiologist first put him on 3.125 Coreg twice a day and one mg Mavik for the first day and a half after the cath. He said to increase the Coreg dose to 6.25mg twice a day. His pulse rate dropped into the 30s and 40s so after a visit to the ER, we were told to reduce the Coreg dose and we did so.
     On September 1st, we saw the cardiologist. He said the slower, the better and that it is how my husband feels that matters. Well, here we are on the 8th day of this dosage. His pulse has remained pretty much in the 30s and lower 40s. He also has an abnormal heartbeat beat: Faint beat, pause, beat, pause, then the cycle starts again. I have noticed at times the faint beat becomes stronger and sometimes I cannot feel it. He started coughing clear phlegm last week (he told me last night), his face is puffy, his breathing in the night (I cannot sleep) included pops and gurgle noises, only it seemed in his throat area.
     I have sinced put him up on more pillows and it has turned to a wheeze. In the past week he has awakened drenched from his sleep enough to need a towel. He has a feeling of fullness and cannot breathe. I have noticed he at times has difficulty thinking. I called the cardiologist Tuesday. They called me back last night and said the doctor wants him to tolerate this medicine but we could go back to 3.125mg twice per day. The doctor also increased Mavik dose to 2mg on the first of September. I mentioned about the wobbliness and the clear phlegm last night and that was it. Today they called and want him to come in tomorrow.
     His ejection fraction is 20 to 25% with irregular heartbeat. We do not have specialists near us. Can anyone tell me what questions I need to ask? Thank you for the help I have already received from this site, I have learned a lot (overwhelmed actually). I still don't know what questions I need to ask. This cardiologist is what we have right now. Should I get another one until I can get to a specialist? srdailey3@earthlink.net

Jon's September 9 reply to Sherry's September 9, 2004 - Hi Sherry, First, Coreg dose must be reduced in any patient whose heart rate is 55 beats per minute or slower. This is per the manufacturer's drug package insert and is based on clinical trial experiences. Second, it is usual when a CHFer has this kind of problem with Coreg to stop the ACE inhibitor until Coreg is tolerated better, then slowly restart the ACE inhibitor. Third, it sounds to me like your husband needs to be sleep tested for apnea. I would address all these issues with the cardiologist immediately - they are immediate concerns.
     If your husband has significant arrhythmia, that is also an immediate concern requiring proper diagnosis and treatment; this can also make EF measurements by echo inaccurate.
     I would get a second opinion as soon as possible and see how it goes with a different cardiologist, then decide if you want either one as a regular doctor. Don't leave yourselves without a cardiologist in the meantime if you can help it. Jon.

Ottye, September 10, 2004 - Hello, I have been reading, enjoying and learning much from this site. Just to refresh memories, I am the one they thought would die after a stroke and being diagnosised with cardiomyopathy, CHF and hypertension. My question is, has anyone else had problems staying warm even when the temperature is above 80° F, even wearing thermals and extra socks? NJetter@cinci.rr.com

Greta's September 10 reply to Sherry's September 9, 2004 - Hello Sherry, You don't say in your post if your husband is taking Lasix or not. If not, he may be experiencing fluid buildup. Extra fluid on the lungs or around the heart does cause breathing difficulty. The gurgle noises that seem to come from his throat sounds like fluid to me. A friend of mine with CHF did not watch her sodium intake, so despite taking Lasix she had so much fluid built up she gurgled. If he is not on a diuretic, he needs to be. Check with the doctor. God bless, Greta. gjohnson@arkansas.net

Greta's September 10 reply to Paul's September 9, 2004 - Hi Paul, How long has it been since you had any tests run, like blood, echo, BNP, etc? You don't say what your EF is. Are you watching your diet and getting exercise? What medications are you on? All of these factors figure into how you are doing physically. What it really boils down to is how you feel. It could be you need to have some followup with the cardiologist. Keep us updated. Blessings, Greta. gjohnson@arkansas.net

Joseph P, September 10, 2004 - Hello, What happens if a paramedic and your ICD are trying to revive you? Does the external defibrillator cancel your internal unit's ability to shock? Where can I find info on this type of situation?Thanks, Joseph P. joeandol@yahoo.com
 
Jon's note: I would contact your device's manufacturer first.

Shellie's September 10 reply to Jon's September 9, 2004 - Hi Jon, Thank you for taking the time to respond to my post. I plan to take the list with me to the doctor and see what he says about it. The thing is, my dad doesn't even have a cardiologist right now since he walked out of the hospital. His only doctor now is his PCP that he's known for twenty years. I'm hoping another cardiologist will take him in but for now he refuses to do anything the doctors tell him to do anyway. I hate knowing he's suffering so much and a lot of it is needless. Jon, I've read your entire site and I just want you to know how much you are helping people. Information is hard to come by for some reason. I wish you all the best in the world in your journey. shellie@cleburne.com

Barbara P's September 10 reply to Marty C's September 9, 2004 - Hi Marty, I had an ICD implant on May 18th of this year. One month later I was scheduled for a re-check. On that morning I had terrible, terrible chest pains, especially when I tried to breathe deeper than a shallow breath. It really hurt and I thought I was having angina or a possible heart attack.
     When we got to the hospital, I had to have a wheelchair because I could not walk due to the pain I was experiencing. I saw the EP cardiologist and was diagnosed with severe trapped gas, evidently from the procedure of putting the ICD in. I was told to stop at a drug store to purchase gas relief pills. I did so and about an hour later, the pain started to subside. Maybe this is your problem! It sure helped to burp a lot.
     I hope you are better soon! I have not had any problems since then with my ICD. I don't really even know it is there half the time. tcbbarb@hotmail.com

Norma, September 10, 2004 - Hi, Having had a low grade fever and scratchy throat for a few days, I went to my doctor to see what was going on. He put me on Zithromax for six days. I have since learned that erythromycin has shown in recent studie