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. firstname.lastname@example.org
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. email@example.com
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? firstname.lastname@example.org
- 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. email@example.com
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. firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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! email@example.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. firstname.lastname@example.org
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. email@example.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! firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.com
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? firstname.lastname@example.org
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! email@example.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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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! email@example.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. firstname.lastname@example.org
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. email@example.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? firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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%. email@example.com
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! firstname.lastname@example.org
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! email@example.com
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. firstname.lastname@example.org
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. ;-) email@example.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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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! email@example.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. firstname.lastname@example.org
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? email@example.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! firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.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! firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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). email@example.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. firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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! email@example.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. firstname.lastname@example.org
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! email@example.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? firstname.lastname@example.org
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. email@example.com
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. firstname.lastname@example.org
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. email@example.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. firstname.lastname@example.org
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. email@example.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 studies reported in the New England Journal of Medicine to greatly increase the risk of sudden cardiac arrest in those taking digoxin or a calcium channel blocker. I am taking both these medications.
I telephoned the doctor to change to Amoxocillin, which has the same curative properties but not the cardiac side effects. He refused to issue a new prescription, telling me there was no danger. This man has been my general practicioner for over 20 years and I had great trust in him until now. Why would he put my life at risk, even if the percentage is small, rather than give me a different antibiotic?
I am taking the Zithromax because I am worried the fever has been going on too long, but every time I take one, I feel I am taking a risk. Has anyone else taken this drug while on the same medications I mentioned? Norma. firstname.lastname@example.org
Jon's note: He should have given you a new prescription immediately without any hassle. However, I should point out that Zithromax is a chemically different derivative of erythromycin called azithromycin. It may not present the same risk.
Roger, September 10, 2004 - Hi, I went to the doctor yesterday and got the rest of the story. My sodium level was 130, potassium 3.8, microalbumin 9.4 and BUN 17. He said all is looking good. We have the county fairs going in our area and the doctor asked if I went to the fair and behaved myself. Of course, I have no choice. I used to have a sausage sandwich with horseradish to clear my sinus cavities, with a chocolate milk shake to wash it down. Now if I did that I'd end up in the hospital!
I see a lot of comment about Coreg and troubles with that but I never had much problem with anything but Lipitor - after 5 years. My blood sugars held good after 4 days (nights for me) of Mondays at work - whatever could go wrong, did! It could have gotten really stressful but I played it pretty cool. Take care to all of you. email@example.com
Jeff Anderson's September 10 reply to Sandy's September 9, 2004 - Hi Sandy, Good luck with your ICD implant. I had mine done in March, 2004. The procedure was not bad at all. It lasted about 2-1/2 hours and I received an "amnesia" drug so that even though I was conscious the whole time, I remember nearly nothing. My stay was extended due to manipulating my blood INR levels and I did have some substantial swelling of the implant site, but that cleared up quickly. Mine is a BiV pacer plus ICD. So far, the device has not responded to any arrhythmias. Best wishes for a smooth procedure and healthy future. Jeff A. firstname.lastname@example.org
Dale E, September 11, 2004 - Hi, I have posted here a few times when my dad is doing his worst. Every time I get great info to run along to him and my mom. This is one of those times for sure. My dad has had a terrible 2 to 3 months. Basically at this point he is almost confined to his house. He isn't it in a-fib anymore as of a week or two ago. He isn't retaining any fluid in his legs but his belly looks bloated. He has trouble sleeping, eating, and now walking around.
He is on 3 diuretics, but no ACE inhibitors or beta-blockers. He is basically being treated for CHF with diuretics and a biventricular pacemaker.
That scares me - does this sound like a reasonable treatment? He is on Coumadin for blood clots and amiodarone (Pacerone) for his a-fib. His blood pressure is very low at 100/55 most of the time. About 4 months ago he was doing great but now he has totally regressed. I think it started when his primary doc moved away.
Does he need another doc based on these treatments? He is 60 years old and we would like him to be around another 10 years, God willing. He has only been diagnosed with CHF for 2-1/2 years. What should we do? God bless. Dale E. email@example.com
Bea's September 11 reply to Eileen's September 5, 2004 - Hi, I moved to Safford, Arizona, USA two months ago from Texas. I am just now getting an appointment with a cardiologist who comes here from Phoenix but there is no CHF clinic here. I have discussed this with my regular doctor and he sympathizes with the situation but that is not helping the problem. I have congestive heart failure, COPD, and sleep apnea. I use a CPAP machine when sleeping. BeatriceBusby73@msn.com
Sherry, September 11, 2004 - Hi everyone, Thank you for your feedback. Armed with the information, we visited our cardiologist. He said, "As long as he is not gasping for air at night and can't get his breath, don't worry about it." As far as the extra heart beat, he said, "We are doing nothing about it because everyone has one - they are too faint to hear in other people." As far as the fluid, he said, "It will show up in his feet and hands."
I asked if there was any valve damage and how much heart remodeling had occurred. He said that I read too much and at the visit we have on 9/22 he will be raising the Coreg dose to 12.5mg twice a day. "As long as he feels good, our goal is to raise it to the target dose." I was astonished his arrogance and patronization.
The good news is that the Cleveland Clinic Heart Hospital called and moved my husband's appointment from October 13, 2004 to October 1, 2004. I read the biography and publications about the doctor we have an appointment with and I have a very good feeling that we will be in very good hands.
The other good news is that my husband sees our PCP two days prior to his next visit with our soon-to-be-dismissed cardiologist and will be referred to a cardiologist in the area with a "special interest" in heart failure. In the interim, if a medical emergency occurs, we will go to the hospital that has the cardiologist we want. Our PCP (we have had him almost 20 years) is in both hospitals so he will support our decisions.
Thank you and I will be back. This group - this site - has raised us from dazed, confused, scared and alone to a level of understanding, tools to cope and people that understand and care. This indeed is a blessing. firstname.lastname@example.org
Sandy's September 11 reply to Jeff Anderson's September 10, 2004 - Thank you for your encouragement, Jeff! I'm so glad your experience has been a good one with your ICD. Although I'm scheduled for the 17th, it may be posponed due to Ivan the Terrible, a hurricane. I'm leaving the state tomorrow. I can't take a third one going over my head. I will check in, when the procedure is completed.. Stay well! email@example.com
Amy, September 11, 2004 - Hi, I have surgery coming up but not for my heart. I'm acutally having an incisional hernia repair and a complete abdominal plasty done on September 23rd. I'm 42 years old, have V-tach, DCM, and heart failure. In the past 2 years my EF went from 30 to 40%, that was after losing 135 pounds.
My heart doc cleared me for surgery back in February, with a long letter to the plastic surgeon. I go back to my heart doc this Tuesday, September 14th, for my 6-month echo and another okay from him for surgery, so I'm keeping my fingers crossed. The surgeon wants another okay from the doc.
The surgeon said he's going to keep me in ICU for 4 days, since the heart doc wrote that I have a high chance of going into CHF. I was in ICU after surgery back in 2002, but not preplanned. My heart wasn't doing well after that surgery.
I'm getting nervous and excited. I guess I just wanted to let people know. firstname.lastname@example.org
Charlotte's September 11 reply to Jennifer B's September 9, 2004 - Hi Jennifer, My husband is on the heart transplant list at UAB and we work with 6 heart failure cardiologists there. We have seen each one of them at one time or another, and we are very pleased. Please feel free to e-mail me with any questions in particular about them. I hope this helps! Charlotte. email@example.com
Lydia M, September 11, 2004 - Hello Jon and all you good people, I have been struggling with a lot of what I think is arthritis. I will check with my doctor. I get up in the morning and every joint and muscle hurts. I was just wondering if anyone on this forum has arthritis and if so, what can we take? Jon, when you talk about leg and foot pain, can you give me an idea what it feels like? All of a sudden all these weird things are going on with me. I start to get worried when things change. God bless everyone here and be well. Lydia Moore. Flanders48@msn.com
Jon's note: I take Celebrex for my arthritis, my wife and daughter take glucosamine. All I can say about my feet and lower legs is that they hurt.
Joy, September 11, 2004 - To Jon and all you amazing folk, I have been offline for days with the computer away at at a "hard-drive hospital." So I have missed quite a bit of chatter about CHF. I had an stress test last week. I was looking forward to it, hoping for some answers, but I failed the test. I was hopelessly out of breath. The treadmill was stopped within a couple of minutes so, insufficient data.
Now what can I expect? I do have an appointment with my cardiologist September 23rd, plus an introductory consult at a sleep clinic. Generally I have been well, but the dietician has put me on a "heart healthy diet" and I gained 2 kilos! Regards and good wishes to all, Joy from New Zealand. firstname.lastname@example.org
Lorraine's September 11 reply to Richard's September 5, 2004 - Hi, After many years of heart disease my husband, age 74 at the time, was in class 4 CHF with an EF of 23% when his doctor suggested he go on Primacor. He went to the hospital's CHF clinic for the IV treatments and he said they were not bad. It took 6 hours each week and he sat in a recliner and watched television. He could get up and take his pole with him into the bathroom when needed.
His doctor saw him each week and also had them do labs on him each time. He did this for about 2 years. He passed away in October but I do believe it made him feel better during those 2 years. It was pretty much a last resort for him. Jon has a section in The Manual about this therapy. I just wanted to give you our experience. I wish you the best, whatever you decide. We did have lots of good years after CHF. Lorraine. email@example.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.
Ann L, September 13, 2004 - Hey, What in the world has happened to me? After a year of compensated cardiomyopathy (EF of 30%), active lifestyle, comfortable chest, I wake up a week ago to shortness of breath. I can't walk up any grade at all. Could anemia have anything to do with it? Could drinking sodium-laced prep for a colonoscopy have any effect starting 2 days afterward? Help! firstname.lastname@example.org
Jon's September 13 reply to Ann L's September 13, 2004 - Hi Ann, Both are terribly hard on heart failure patients. There is a low-sodium prep available - see www.endonurse.com/articles/281feat1.html. For more on anemia -which should always be treated in a CHFer, see www.chfpatients.com/heartbytes.htm#anemia_3. Jon.
Ann's September 13 reply to Sherry's September 11, 2004 - Hi, There are lots of problems with your husband that I cannot respond to but there is one area I can comment on - the low pulse rate. I have one that is frequently in the 38 to 42 range and I do have irregular heart beats (premature ventricular contractions). Those readings can scare the pants off other doctors, but the cardiologist says that the skipped beats throw the readings way off. He reads the EKGs and says not to worry. He says the blood pressure readings can be relied upon. email@example.com
Susan B's September 13 reply to Dale E's September 11, 2004 - Dear Dale E, Is it possible to get your dad in the doctor's office for a second opinion? If the treatment plan is not working for your dad then you all may need to make changes and the biggest change that you can make might just be the doctor.
My husband George, has DCM and his doctor (also Jon's doctor) charts quality of life issues at every doctor visit. We look at the graphs on the exam room computer monitor as part of the visit. Also, we wanted an proactive doctor. My husband is doing very well overall (still has good days and bad days) and I believe it is because his doctor makes him (us really, since I do all the reading and asking of questions) a part of the treatment plan. After all, if my husband doesn't follow through with the plan on a day to day basis then even the best plan will fail. I would get your father to another doctor to see if anything else can be or should be done. I would not let him regress.
I do have a question. Was your dad cardioverted out of a-fib? My husband was 2 different times over a year apart. About 6 to 8 weeks after the cardioversion he went downhill. The first time he turned blue (fingers and lips) because his oxygen was down to 81% when walking or moving - and he can't sit still for very long. It lasted for a few weeks and then he was better. He did not get as bad the last time but he did slip back a little. George's doctor was not surprised by the change and said that it sometimes happens after the cardioversion.
You all will be in our prayers. However, if your dad is not getting better then I would start asking more questions and the answer might be another doctor with a treatment plan and who is more aggressive. Jon has pages with the standard treatment. I would take that with me to the doctor's office. The really good doctors like you to ask questions. You need a plan that works for your dad. Good luck. Susan B. firstname.lastname@example.org
Marty, September 13, 2004 - Hi Jon, I realize I must be using up my allowance of posts lately - I just can't help myself! Your advice is always so reassuring and straightforward it truly helps me with my perspective.
Here's the thing this week: I have such awful chest pain they don't seem to know what to do with me. I've been to the ER twice this week for sharp chest pain to the point I could barely breathe. Yesterday it was accompanied by loud gurgling and clicking sensations around my heart. This got me about 15 to 20 residents in to hear my unique "pericardial rub." The echo showed a small amount of blood in the pericardium, which is no change from the last one and not enough for an invasive procedure. They won't use NSAIDs for the inflammation because my cardiologist doesn't feel the risk is worth it. So I have this inflammatory condition, perhaps pericarditis, pleurisy, or costochondritis, and all they're able to treat is the pain symptom.
In the past five days, they've given me 80 Percocets, five 72 hour fentanyl patches, 40 oxycodone pills, 40 Vicodins, and 20 Xanax. I don't want to be a drug addict, and 'm not even sure which ones I should take together! I'm wearing the fentanyl patches so I'm reluctant to take anything else with it. Do you think the underlying inflammation will resolve on its own? Please opine. God bless, Marty. email@example.com
Jon's September 13 reply to Marty's September 13, 2004 - Hi Marty, Different painkillers work better for different kinds of pain. For me, muscular pain is best relieved by simple Vicodin rather than the more exotic and "powerful" meds like fentanyl. However this will vary from person to person. Believe me, with 15 years of working in lumber mills and sawmills, I've torn up lots of body parts and taken plenty of pills for it. Another thing to remember is that narcotics don't psychologically addict people who take them for acute pain and who do not have a history of addiction - that's a fact.
Have you seen a chiropractor? See one who takes a simple set of x-rays, then does "spinal manipulation" - not a bunch of weird new age stuff. I once "spread" a rib and the pain was truly excruciating. A cardiologist and MD told me it was all in my head because they could not find the cause. The next day I saw my chiropractor. One x-ray and 3 minutes later, I was fine. He said the rib was poking my lung and that's why he had to take an x-ray, to be sure he didn't puncture it by moving it the wrong way. It's a possibility, however slim, that may help you.
If you have loud gurgling and clicking sounds coming from the area of your heart, and your doc is just prescribing pain pills, maybe you should haul off and kick him in the shin - wearing pointed boots. This is not normal and in my view, not acceptable. If he doesn't know what to do about it, he should find someone who does. Period.
Finally, treatment decisions are ultimately up to the patient, not the doctor. If the time comes when you must address this with anti-inflammatory agents, do it. Just pick the meds and the delivery systems that pose the least risk for heart failure patients. Your cardiologist gets paid to manage your condition - make it even more of a challenge so he earns those big bucks. That's my 2¢ worth. <g>
PS. Posts don't work on a quota system around here. If you get to be a pain in my neck, I'll say so. That's me. ;-) Jon.
Sandy's September 13 reply to Amy's September 11, 2004 - Hi Amy, I'm sending all the good vibes and prayers I can muster up for your upcoming surgery! You're gonna do wonderfully. Remember to check in with us, when you're feeling up to it. Good luck. firstname.lastname@example.org
Vicki J's September 13 reply to Sandy's September 9, 2004 - Hi Sandy, I'm 49 years of age and my older brother also died before me at age 39, in a work accident. My dad also died with CHF. I'm like you in wishing they had all the new meds and devices available when Daddy was still alive. I know he could have lived longer.
I had my ICD implanted on January 17, 2004. I was so scared and was certain that I would die during the procedure but everyone here at this site calmed my nerves about their experiences and it truly helped. I'm just really afraid of being put to sleep.
I was lucky and had a great doc. I asked him to implant it as deeply as possible without putting it under the muscle (greater chance of infection). You can't really see mine but you can feel it and of course I have the scar, which isn't bad at all. They usually put it where your bra strap would be. I have a Medtronic ICD and so far haven't had any problems.
You'll be in my thoughts and prayers. Let us know how it goes. Vicki J. email@example.com
James, September 13, 2004 - Hi, I picked this up on a group and found the reference site from an ABC feed. Erythromycin, a commonly prescribed antibiotic, maybe should be off-limits for some heart patients. The write up is based on a New England Journal of Medicine published study from last week. Here's a link to the article: http://abclocal.go.com/kabc/health/091004_HS_antibiotic_heart.html. The abstract of the study is available at: http://content.nejm.org/cgi/content/short/351/11/1089. firstname.lastname@example.org
Ruthie A's September 13 reply to Lydia M's September 11, 2004 - Hi Lydia, Since I am extremely allergic to sulfa, Celebrex, and a host of other meds for arthritis are out for me. I was living on Advil Liqui-Gels and enduring swollen ankles and feet. My cardiologist said to talk to a rheumatologist. Duh! Why hadn't I thought of that before?
I found the nicest rheumatologist who prescribed an old anti-inflammatory called Salsalate that does not cause fluid retention. The great thing about Salsalate is that since it is a cousin of aspirin, it helps with the leg aches and pains. I have had minimal discomfort since starting this drug. Of course, when I have a killer headache I am limited to Tylenol, but I'm not complaining. At least I am able to move. :-) Ruthie A. email@example.com
Shane, September 13, 2004 - Hi, I'm new to this site, but not to CHF. I'm 33 but have been diagnosed for 7 years. However, my doctors and my body have decided it's time to start pursuing the heart transplant route. I'd appreciate any tips, advice, what to expect, etc,..., about all this from ones who have been there and done that. I know I'll be getting tons of info from my doctors but would rather get a patient's plain English explanation and not a bunch of medical-talk. Thanks. firstname.lastname@example.org
Lori K, September 14, 2004 - Hi, Does anyone have any good recipies for sandwich bread they can share? I have the Lowest Sodium Cookbook, however I am looking for some new ideas for wheat breads. I just got home from a weekend vacation and despite checking everything for salt in the restaurants, I got a shock when I got on the scale and today I am really dragging. Any new recipes would be appreciated, and yes Jon, I did get the one off Let's Cook. Thanks for that one! Take care, everyone. Lori K. email@example.com
Jon's note: I'm no help at all - I haven't eaten bread in 2 years.
Jack D's September 14 reply to Jon's September 13, 2004 - I beg to differ, kind of. You're right that narcotics don't psychologically addict you because they are true addictive agents. They cause "physical" addiction which was the only type of addiction until liberal wonks started rewriting definitions. True addictive agents alter your metabolism to a point that your body will not function properly unless the addictive agent is ingested in the proper proportions. There are very few truly addictive agents.
However back to Marty, you need to know that all that junk they are pawning off on you has much worse effects than the possibility of addiction. One of those effects is heavily impacted narcotic constipation. That's one of the reasons I won't take that stuff. Eating a meal laced with habanero peppers does a lot for pain. I eat that kind of stuff all the time and noticed that pain dissipated for a few hours after I ate. I asked my doctor (my real doctor, not a homeopath or any of those other weirdos) and he said it mades sense to him because capsacin works as a painkiller. firstname.lastname@example.org
Jon's September 14 reply to Jack D's September 14, 2004 - Howdy-doo Jack, We'll just have to agree to disagree on this one. I believe that narcotics can have 2 distinctly different addictive actions: one physical and one psychological - and my philosophy is anything but what you call liberal. <g> I would say there are quite a lot of physically addictive agents, based unfortunately on my own personal experience. By the way, munching habaneros should eliminate that potential constipation as well. <lol> I now use equally murderous Vietnamese chilis - just as hot but not as fruity. Yum! Jon.
Sandra, September 14, 2004 - Hi, I posted recently about my SSD review. I received a letter telling me I had to see a doctor of their choice. I am really starting to worry about this. I was just in the hospital a week ago for chest pain and my EF has gone from 55% to 40 to 45%. I had a heart cath done because of chest pain. I see that a lot of you have problems with that also. They told me about my EF. Should I contact SS to tell them about this and my recent hospital stay? I had already sent my paperwork in before this happened.
My heart cath was fine, they don't know what caused my pain. Sometimes I think they think it's all in my head. Believe me, it's real. Jon, what happened about your review? I want you and everyone else to know how much this web site means to me. I check it daily. I have a great family and friends who support me but unless you have been through this, I think it's hard for other people to understand.
Does anyone get the line about how good you look and you don't look like you are sick. I would be more than happy to trade hearts with them. I just think people don't understand this condtion. Thanks for listening to me. Best wishes to everyone. Sandra S. email@example.com
Jon's September 14 reply to Sandra's September 14, 2004 - Hi Sandra, I don't know about my review. Maybe they actually listen to their voice mails. I left them a message that I already had a cardiologist's appointment for this month and at that appointment, my doc would schedule an exercise test. Either they are waiting for those test results or they just haven't gotten my review done yet. They don't return my messages.
About keeping SSA informed, yes, absolutely send them the most current information - it can make a difference. Jon.
Elka's September 14 reply to Shane's September 13, 2004 - Hi Shane, I'm 18 and had a heart transplant last year in August. I was born with DCM and everything was going fine until April last year when I had an infection that gave me a really high temperature for a few days. High fevers can do terrible cardiac damage for healthy people, let alone people with already existing cardiac problems.
The transplant journey is fairly comprehensive as far as what to expect goes. For some it works out really well (like in my case) and the medications (anti-rejection meds) don't cause too many hassles. For others, post transplant can be a difficult time, especially in the first year where it takes time for your body to adjust to having a foreign organ inside it and for the doctors to get the medication doses correct without giving unwanted side effects - and there are many!
Despite all the possible hurdles that you may face, in my opinion, much of it has to do with how willing you are to be compliant and look after yourself post transplant using exercise, eating right, etc. Six months after my transplant, I started first year at university and have realized that I've never felt so physically fit, even compared to the years before I really got sick. If you have any specific questions or need someone who has gone through the transplant experience to talk to, feel free to e-mail me. firstname.lastname@example.org
Giorg, September 14, 2004 - Hello, Diuretics not only help to avoid congestion and CHF, but also reduce the blood that the heart has to pump. So diuretics help the heart to rest and to last longer. So why do some doctors eliminate diuretics in therapy of DCM patients that do not retain fluid (when they are stable)? I have been off diuretics for a more than one year, I do not retain fluid, I wonder if I would feel even better with a little quantity of diuretics. What do you think? Thank you. email@example.com
Jon's September 14 reply to Giorg's September 14, 2004 - Hi Giorg, Diuretics don't reduce risk of death or reduce hospitalization in CHFers without edema. Diuretics do cause fatigue, muscle cramps, and often dehydration in patients who don't need them. This kind of drug is just meant to reduce symptoms (edema) but does not address any of the causes of CHF problems, so if you don't have the symptom (edema), the drug does you no good and can cause you harm.
To everyone, I know this sounds silly but mailings will go out again as soon as this so-and-so deep cut on my fingertip fully heals. The digit has been trying to heal - and failing - forever, it seems. I mention this only because it is driving me closer to the proverbial edge every day! <g> Jon.
Carla's September 14 reply to Shane's September 13, 2004 - Hi Shane, and welcome! This is a wonderful site and hopefully you will find the answers you're seeking. I'm now 36 and was just diagnosed with viral cardiomyopathy in January. I'm continuing to hold steady at an EF of 25%. I just wanted to ask you, if you mind sharing, a little more about your background. What caused your heart failure, what is your EF, and what types of treatment have you been under? Most of all, why are you now headed towards transplant? firstname.lastname@example.org
Pat Y, September 14, 2004 - Hi, Recently I was given some unsolicited advice on how to "heal" my heart. I was rather offended that someone who knew nothing about my diagnosis would offer a "cure." Did you know that infrared in a health sauna is used for "pain relief, skin problems, circulation and lymph problems, speeding healing, stimulating the immune system, killing viruses, bacteria, parasites, detoxification, and stress relief"? Suppossedly the Mayo Clinic has a report on congestive heart patients and "far infrared" but I cannot find it even though I was told where to locate this information. It sounds very quackish to me. Any comments? PTYoumans@aol.com
Jon's note: Certain light therapies are powerful but as far as I know, they must be applied directly to cells to work - meaning blood must be drawn, treated, and reinjected into your body to have an effect.
Greta, September 14, 2004 - Hi everybody, This post is just to share some info. This won't pertain to all of you because it mainly addresses the geriatric age group, but some of you may benefit from it. An article in my AARP bulletin (I'm age 57) was about a pharmacist named Armon Neel who helps the elderly by addressing their medication needs and problems. He says too large a percentage of the elderly are overmedicated, taking the wrong medication or the wrong combination of medications. This can happen with any age group. He sees people individually and at nursing homes.
He says NSAIDS should never be given to old people. He says "pharmacists are often a patient's last line of defense in a nation of doctors who, more often than not, don't know much about the drugs they are prescribing and the geriatric population they are treating."
The American Society of Consultant Pharmacists offers information at www.ascp.com. A companion site is www.SeniorCarePharmacist.com. Blessings, Greta. email@example.com
Kathy H, September 15, 2004 - Hi, Does anyone here have rheumatoid arthritis along with their cardiomyopathy and CHF? I wrote a while ago that if I didn't get some relief from the RA, I wouldn't care about the CHF, but lately I just don't know.
My rheumatologist put me on prednisone, plaquinel, methotextrate and folic acid. The last week or so I am having what I think are cardiac-related issues such as rapid heart beat, profuse sweating, SOB, and just generally feeling crummy. How do I get the 2 specialists to work together? Is there anyone out there going through this too? I'm never crabby but the other day I just sat and cried all afternoon. firstname.lastname@example.org
Lori K, September 15, 2004 - Hi all! Jon, I was wondering if there is any way to get the highlights of the Heart Failure Society Meeting in Toronto? My doc is Marc Silver and I know he is in attendance. It was in the last week or so I believe. Any new info is always of great interest. When I see Dr. Silver next I will ask him about it as well. Let me know! Lori. email@example.com
Jon's note: I find the HFSA web site almost useless so I haven't looked there yet. It is located at www.hfsa.org.
Michelle's September 15 reply to Shane's September 13, 2004 - Hi Shane, I'm currently 8 years post-transplant, and doing very well now. I have to agree with Elka the first year is the hardest year after transplant, especially with your body adjusting to the donor heart and immunosuppressants that help prevent rejection. Your appointments during the first year are more frequent for biopsy and clinic to make sure that everything is going well. It is quite normal after transplant during the first month or so to experience some rejection. That is why your appointments to the clinic for blood work and biopsy during this time after transplant are so important. This is when the transplant team will begin to adjust your medications to get them to a safer level that will help you hopefully become rejection-free. I'm happy to say after experiencing a little rejection during the first month after transplant I have been rejection-free since. I thank God for that every day! Receiving a heart transplant has been a blessing for me. I hope that this has helped you. If I can be of further help to you please don't hesistate to ask. Blessings. firstname.lastname@example.org
Betty, September 15, 2004 - Hi, I have really enjoyed your site and wanted to comment on the relief I've felt at finding information about heart failure from a patient perspective. I was diagnosed with heart failure in 2000 and have gotten progressively worse. I was originally placed on captopril but had to be taken off it due to an allergic reaction. I'm on several other meds such as Coreg and Cozaar, but I'm wondering whether I should be placed on some other type of ACE inhibitor since they are so effective. Has anyone had a similar allergic reaction to a specific type of ACE inhibitor but been fine on another type? email@example.com
Nancy's September 15 reply to Sandra's September 14, 2004 - Hi Sandra, I think we've all heard that we don't look sick, but looks can be very deceiving. Don't let it get to you. Only you know how you feel and you don't have to prove anything to anyone. Just take care of yourself. Hopefully people who say things like that will never have to find out how bad you can feel while looking so well. firstname.lastname@example.org
Susan, September 15, 2004 - Hello, I am feeling a little discouraged. I was diagnosed with DCM and a-fib in 02/2004, thought to be caused by a chemotherapy drug, with an ejection fraction of 15 to 20%. Since then, I have faithfully been taking my medications, exercising, and eating right (most of the time). My blood sugars are under control and I have successfully completed my cancer treatments. I am feeling better and walk 4 to 5 times per week, plus do strength building exercises in addition to maintaing full time employment.
My March EF was 41% and recent September EF was 34%. We were all surprised at the drop in my EF. The cardiologist suggested a cardiac cath to rule to out CAD and the medical oncologist thinks having a heart biopsy might be a good idea to rule in chemo toxcity as a cause of my heart problems.
I am pretty much topped out on meds of Lisinopril, Toprol-XL, Aldactone, Lipitor, Glyburide, and Lanoxin. I also take baby aspirin and I take Lasix if needed.
Any suggestions? I see a lot of posts about EFs improving versus decreasing. I guess I thought all these meds would make me have a better EF. I feel fair to good most of the time. Some days I am tired and I have a great deal of problems with sleeping. Thanks for letting me e-bend your ears. Susan, age 43, breast cancer survivor, DCM, a-fib, diabetes, high cholesterol and overweight. email@example.com
Jon's note: Just a quick comment from me - my EF went up and down several times - occasionally, a lot - before steadying at a higher level. Don't despair.
Donna V, September 15, 2004 - Hello, After today I am officially in line for a biventricular pacemaker. I await a call for the scheduling from an electrophysiologist, a big name for a pacemaker surgeon. I don't know. This place was involved in a trial. There was mention of possibilty of an ICD too but not until they rev up my heart when I'm "under." I'm okay with the pacemaker but the ICD worries me and I presume they'll not kill me on the spot! I am not amused by that.
It seems my a-fib no longer shows up. My EF remains below 20%. With great anxiety I went for the Vo2max today. The test was not as bad as I had anticipated and I was really stressed about it even after reading Jon's blow-by-blow and my concerns about my unreliable legs. I went 6-1/2 minutes and did not get to 4th level. I only felt fuzzy and the guys seemed to be encouraging me to stop. I did hear the words "not a transplant candidate." I do want to know more about the stressing of my sad heart when I'm "under" even though I'll do what I must. I kept thinking "could be worse" - hurricane Ivan could have us in its sights. Be safe all of you in the direct path. Donna V. firstname.lastname@example.org
Donna H, September 15, 2004 - Hi, My husband is still in the testing phase for heart transplant. Yesterday he had a Swan-Ganz heart cath (right-heart cath through the neck). They put it in yesterday morning and left it in until this afternoon. He started in the cath lab then was moved to ICU. Throughout that time, they put in different meds and took measurements. I saw both Primacor and dobutamine but I am not sure if there were others used when I wasn't there. He was awake for the entire procedure and said it was uncomfortable but not painful. The preliminary numbers look right for transplant according to the nurses that I talked with before he was released.
His next test is the CPX (Vo2max) next week. This is the final test in the first round of testing as far as we know. To me, one of the strangest things was that he was in ICU for two days then they slipped the cath out, took out his IV and sent us home! Oh and by the way, he said that the dobutamine and Primacor made him feel like Superman! email@example.com
Giorg, September 15, 2004 - Hello, Yesterday I was zapped again by my ICD. This thing is making me nuts - this is the second time in 5 days. Again, I found out it was a V-tach like the first time: The rate was 210 bpm. I really think now it is time to modify the settings of my ICD. It is programmed to stop V-tach faster then 200 bpm with a single big shock instead of trying first with smaller burst. I want it to try with burst on V-tach.
What is your experience? Does anayone know the settings of his ICD? Anyway, I should also try a new therapy maybe since I get too many V-tach episodes. I heard of a new beta-blocker that is more effective on heart rate. Is shifting beta-blockers a big deal? Thank you all. firstname.lastname@example.org
Jon's September 15 reply to Giorg's September 15, 2004 - Hi Giorg, It usually is not too tough to change beta-blockers. For ICD experiences, implantables dot com may be a more useful forum. See www.implantable.com/ubbcgi/Ultimate.cgi. I hope it helps. Jon.
Clara D's September 15 reply to Lori K's September 14, 2004 - Hi Lori, I've found two recipes I like for sandwiches. Both are from David and Thomas Anderson's No-Salt Cookbook. The first is a honey wheat bread - watch it since it rises very fast:
I use my mixer with a dough hook, give it two rises in the bowl and a third in the pan, before baking at 450 degrees F for 10 minutes and then 350° F for another 25 to 30 minutes. This recipe makes 2 loaves. The bread has good texture and flavor, and makes good toast.
I made the above recipe yesterday using a bread machine. I cut the amount of all ingredients in half except the yeast, using only 1-1/2 tsp of yeast. Add flour as necessary if the dough isn't cleaning the sides of the pan during the kneading process. I used the white bread 1-1/2lb loaf, medium crust setting on the bread machine and it turned out fine.
Another favorite sandwich bread for me is from the same cookbook, which I haven't tried in the bread machine. It is Olive Oil and Basil Bread - watch it since it also rises very fast!
I used my mixer with a dough hook with one rise in pan. I formed this into 5 round loaves and let rise. I bake these using a baking tile at 375 degrees F for 30 minutes. It's really good bread. That cookbook also has a coconut and hazelnut bread which is great! Happy baking! email@example.com
Scott Brown's September 15 reply to Giorg's September 14, 2004 - Hi Giorg, Your question is posed in an indirect way. You make it sound like your CHF symptoms are not present, but you are still seeking to feel better? Jon mentions edema, but diuretics will help with hypertension (high blood pressure) along with other symptoms such as SOB. If you are suffering with these types of symptoms, you may benefit from diuretic use. I agree with the premise that diuretics should not be used unless it is medically necessary. While I do not have any visible edema, I retain amazing amounts of fluid. I assume everyone on this board weighs themselves daily to closely track weight increase through fluid gain. Thanks, Scott Brown. firstname.lastname@example.org
Scott Brown's September 15 reply to Sandra's September 14, 2004 - Hi Sandra, I had a lot of chest pain in the first year after diagnosis. I experience almost nothing out of the ordinary now. It was a generalized pain, not in a specific area, both the right and left sides. It seems like my chest has "settled in" now.
People always tell me that they would never guess I am seriously ill. In fact, I get asked for identification to get into casinos even though I am 35. Perhaps there is something in the meds which retains a youthful outer appearance. At times, people do tell me that I look awful - and I like the compliments better than the honesty. Ha. Scott B. email@example.com
Paul's September 15 reply to Greta's September 14, 2004 - Hi Greta, Thanks for your reply. I had a cardiolite stress test done again in July and my EF was 30%. I am on three meds: Coumadin (warfarin), Alsace, and digoxin (Lanoxin). I exercise religiously, even if I don't feel like doing anything, I still force myself to get up and exercise, which make me feel better after doing it. This is usuallly biking, walking or swimming.
It's just been in the last month that I hit an energy low that I've never experienced before. It's hard to know what's happening next with this illness, hence my question. Thanks for your reply. Take care, and I will let you know if anything changes. Thanks, Paul. paulox200320032@Yahoo.ca
John W, September 15, 2004 - Hi, I just got a little "off" time from my father's house, so I thought I'd knock off a note. Thanks for the input. I took Pa to the regular MD. I showed her the sores on his legs, explained the side effects of the loop diuretics (water pills) and gave her the complete rundown on existing quality of life. I guess I woke her up when I told her that at this point I was the 24/7 care and I needed information to do my new job in a credible manner.
It worked. The flow of information went from a trickle to a stream. Next week the heart specialist. Just out of curiosity, any idea what FACC, and CCNC stand for? (more initials after the doctor's name) firstname.lastname@example.org
Jon's September 15 reply to John W's September 15, 2004 - Hi John, See www.chfpatients.com/docs/docs_list.htm#terms - let it load and it goes straight to the terms. ;-) Jon.
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.