Beverly C 2-16 radiation with angioplasty coming up - prayer request
Wayne S' 2-16 reply to Jon's 2-15 those blood tests really are important
Joe S 2-16 diet and exercise - lifestyle - can really help
Claire E's 2-16 reply to Brian's 2-15 low sodium ricotta substitute
Mike J's 2-16 reply to Joe S' 2-16 exercise and attitude
Andrea M's 2-16 reply to Jon's 2-15 update, appreciate all the advice
Davida S' 2-17 reply to Anna's 2-15 SSD experience
Davida S' 2-17 reply to Andrea M's 2-16 getting a second opinion & answers
Walter K 2-17 location helps in posts about doctors
Ginger 2-17 motivation to exercise
Joe S' 2-17 reply to Mike J's 2-16 maybe not exercising re-hurt my heart?
Ophelia's 2-17 reply to Brian's 2-15 ricotta substitute
Bev T 2-17 retirement, disability, transplants
Isabella S 2-20 pains in neck and leg - questions
Bill B 2-20 SSD strikes me down again
Bob H's 2-20 reply to Jon's 2-12 looking forward to Myovive again
Brian 2-20 am I eating enough salt?
Jon's 2-20 reply to Brian's 2-20 eating enough salt
Beverly C 2-20 brachytherapy experience
Mary Hickerson 2-20 update
Donna 2-20 can we be cured? how many of us?
Jon's 2-20 reply to Donna's 2-20 see The Manual
William B 2-20 losing strength
Carol's 2-20 reply to Ann C's 2-14 valve repair possibilities
Autumn's 2-20 reply to Joe S' 2-16 distilled water, magnesium & more
Harry 2-20 intro
Ginger 2-20 wondering when Myovive will be available
Jon's 2-20 reply to Ginger's 2-20 hard info to pin down
Anna N 2-20 on the road to disability & more
Richard Hennion 2-20 serious weight loss - questions
Karen K 2-20 update, prayer request
Brian's 2-21 reply to William B's 2-20 strength training and CHF is tricky
John 2-21 sure am tired of the meds and not working
Gus R's 2-21 reply to William B's 2-20 exercise & CHF
Ben B's 2-21 reply to Gus R's 2-21 exercise & CHF
Ben B's 2-21 reply to John's 2-21 not working has been worst for me too
Jon 2-21 page updates, ask the doctor page
Phyllis A 2-21 old-timers posting
William B 2-21 exercise & CHF
Wayne S 2-22 not being able to work & more
Ginger 2-22 the old exercise question & more
Dana J 2-22 exercise, questions on how to lose weight
Bob H 2-22 EF up but I feel terrible, questions
Ginger's 2-23 reply to Dana J's 2-22 exercise & more
William B's 2-23 reply to Ginger's 2-22 exercise & more
Donna S 2-23 how long am I likely to live? & more
Jerry 2-23 new to CHF
Joe S' 2-23 reply to Ginger's 2-22 I disagree with your doc about exercise
Claire E's 2-23 reply to Ben B's 2-21 not being able to work & more
Sherrell G's 2-23 reply to Dana J's 2-22 changing the treadmill incline
Ginger's 2-24 reply to Joe S' 2-23 exercise
Jon's 2-24 reply to Ginger's 2-24 exercise
Mike J's 2-24 reply to Donna S' 2-23 shock of being too sick to work & more
Lynn D 2-24 jacuzzi made me feel bad - questions
Jon's 2-24 reply to Lynn D's 2-24 hot water and blood pressure possibility
Joyce Walters 2-24 COMPANION pacing trial
Wayne 2-26 does anemia come with CHF?
Dana J 2-26 cannot come to grips with weakness
Jon's 2-26 reply to Dana J's 2-26 coping
Ginger 2-26 digoxin question, prayer request & more
Jon's 2-26 reply to Ginger 2-26 digoxin & spironolactone side effects in me
Andrea M 2-26 update, thanks
John Len 2-26 to Ginger, e-mail address question
Krista L 2-26 seek info on vascularitis
Jon's 2-26 reply to Krista L's 2-26 vascularitis possibility
Harry Miller 2-26 opinions on exercise
Gina's 2-26 reply to Joyce Walters' 2-26 never heard of CHF pacemakers
Jon's 2-26 reply to Gina's 2-26 CHF pacemakers, tips
Jay's 2-26 reply to Donna S' 2-23 our mortality, coping
Claire E's 2-26 reply to Jon's 2-24 exercise experience, coping
Ben B's 2-27 reply to Harry Miller's 2-26 getting back to work
Joshua 2-27 coping with loss of physical abilities
Jon's 2-27 reply to Joshua's 2-27 stress
William B 2-27 update, questions
Dana J's 2-27 reply to Jon's 2-26 considering pacer, just venting I think
Jon's 2-27 reply to Dana J's 2-27 for what it's worth
Dana J 2-27 diuretics are not working - questions
Wayne S' 2-27 reply to Dana J's 2-26 coping
Ginger's 2-27 reply to Len's 2-26 Lanoxin, e-mail, prayer request, seek opinions
Jon's 2-27 reply to Ginger's 2-27 I hope others reply too
Gus R's 2-27 reply to Ginger's 2-26 Lanoxin experience
Lee R's 2-27 reply to Ginger's 2-26 Lanoxin experience
Patrick 2-27 seek SSD application advice
Richard B's 2-27 reply to Wayne S' 2-26 anemia possibilities
William B's 2-27 reply to Joshua's 2-27 coping
Ruthie A 2-28 update - good news
William B 2-28 doctors, being a patient & more
Davida S' 2-28 reply to Patrick's 2-27 SSD advice
Thelma 2-28 Coreg experience & questions
Pam A's 2-28 reply to Patrick's 2-27 SSD advice
Ginger's 2-28 reply to Wayne S' 2-27 docs, anemia, coping, prayer requests
Joe S' 2-28 reply to Wayne S' 2-27 coping, exercise
Jon's 2-28 reply to Joe S' 2-28 exercise versus activity
Sherrell G 2-28 Coreg experience, questions (some for women)
Jamie S 2-28 heart murmur questions
Gus R's 2-28 reply to Patrick's 2-27 working while applying for disability
Gaile 2-28 swollen ankles and varicose veins questions
Joe L 2-28 question about very fast heart rate
Stephanie 2-28 Coreg experience
Ophelia's 2-28 reply to Sherrell G's 2-28 Coreg experience
Beverly C, February 16, 2001 - Hi Guys, I have not been here for awhile because I was doing so well following my gallbladder removal in October of 2000. The monster of restenosis returned, though. Due to the fact that I have had 3 angioplasties in the last 13 months, they put me in a study to have the radiation therapy (brachytherapy). I was in the hospital yesterday for an angiogram and passed the criteria with flying colors. After only 3+ months, my LAD was 70 to 80% closed. I got to come home until early Friday when I go back for the angioplasty with radiation.
This is my doctor's first case to get through to radiation. I feel like road kill must look to vultures! Every time I answer a question correctly, he grins! No, I know that it is my best shot at more normal life, longer than 3 - 4 months at a time. I am only 54 years old. Please remember me in your prayers, that all comes out well. I am nervous and a coward. It is being done at Baylor University of Medicine in Dallas, Texas, by Doctor Carlos Velasco. As soon as I get back home, I'll let you know what went on. My best to you all, Beverly C. firstname.lastname@example.org
Wayne S' February 16 reply to Jon's February 15, 2001 - Hi Jon, Thank you so much for responding to my message. Since my liver enzymes were high, my doctor is checking my blood every month. They have gone down some since being taken off of potassium and Lasix. My doctor does check my blood every 3 months and sends me a copy of the test. If anyone who is taking potassium and Lasix is not getting their blood checked, please do so. It is very dangerous not to. Take care, Wayne S, DCM, CHF. email@example.com
Joe S, February 16, 2001 - Hi Autumn and Anna, and everyone, I know I sound like a broken record sometimes but last Wednesday another doctor said I no longer have CHF. I still have a bad murmur but all symptoms of CHF are gone. I attribute all of it to moving to a climate with very low humidity, exercising every day except when I am snowed in, breathing no smog, following everything Jon has said, drinking distilled water, taking CoQ10, living where there is no crime and therefore low stress.
Regarding SSD, I got it instantly because my doctor put on my form that I was 100% permanently disabled. I wrote last week that this same doctor who said I no longer have CHF said that I now have diabetes with a 268 blood sugar reading. I immediately went to a health food store and got Ezekial 4:9 bread, sugarless sweeteners, etc,... My blood sugar has registered in the 130s for the last 3 days. I am convinced that exercise and the right diet can perform miracles. I haven't felt this good in decades and I have had this bad ticker now for over 56 years. Don't ever give up because everything said at this site works. The only thing that really hurt me was too much magnesium. Joe S. firstname.lastname@example.org
Claire E's February 16 reply to Brian's February 15, 2001 - Hi Brian and everyone, When it comes to food, I'll always try to find a way! Try this for ricotta - it's not lowfat but the fat that is in it is heart healthy. Take a one pound tube of tofu (there is low fat tofu but you have to search for it) and place it in cheesecloth. Squeeze all the water you can out and crumble it with your fingers to a small curd size. Take 1/4 - 1/3 cup of extra virgin olive oil and whisk in one teaspoon each of dried basil, oregano, freshly ground black pepper, and onion powder. Now blend with your fingers. I've gotta get my hands into cooking - can you tell?
Use this to stuff the ravioli, perhaps with spinach, steamed broccoli or mushrooms. If you make your own tomato sauce with no salt or buy canned with no salt, it's great! We use it to stuff shells, make ziti, etc,... The kids have no clue it's tofu and since hubby is lactose intolerant he can enjoy it too. I got the recipe from Vegetarian Times magazine. They have some pretty neat ideas sometimes. I hope you like it. Enjoy and happy eating! Love and peace, Claire E. email@example.com
Mike J's February 16 reply to Joe S' February 16, 2001 - Hi Joe, I also believe exercise can help us if we are in a stable stage of cardiomyopathy - if there is such a thing. I have an EF of 40 - 45% according to one doctor and 35 - 45% according to what I see. I work out 3 - 4 times a week and lately it has been 4 times a week. I walk 25 minutes on a cross country and then do all of the weights I can do, working each part of the body each day. I still need to lose a lot of weight but I am convinced that exercise and a good attitude are so very important. It is good to hear of your success and I hope all of us can have some of that success. Thanks for your post and God bless! firstname.lastname@example.org
Andrea M's February 16 reply to Jon's February 15, 2001 - Hi, Thanks for the advice. I am looking for another cardiologist in my area but it is hard! The healthcare industry here revolves around one hospital and many doctors have joined very large practices. My current one has 28 doctors in adult cardiology and several more in pediatrics. The electrophysiologists that I've found are either within that practice or associated only with the hospital and require you to be admitted by your personal physician. I hate that this is happening because I have a lot of trouble trusting doctors anyway! I was misdiagnosed with asthma for a long time before anyone realized I was in heart failure.
I am meeting with the senior partner in the cardiology practice next week. He is a friend of my grandfather and was out of state until today. Hopefully friends in high places will hold true and I'll get what I need. My doctor did say we will "do other things to investigate" if the increase in metoprolol doesn't help. Again, thank you all for posting and e-mailing me. Your experiences have been invaluable! God bless, Andrea. email@example.com
Davida S' February 17 reply to Anna's February 15, 2001 - Hi, My husband was approved the first time. I hate to say this but we sounded as pitiful as we could in the application and all of it was true. For instance, we said, "can no longer play Play Station games without becoming exhausted; days spent reading and watching television." This was a big difference compared to his life prior to CHF. Prior to this he was an inspector at an aluminum company and did lots of heavy lifting and constant physical activity. They will look at medical records but as most people here will tell you, test results aren't always an accurate picture of someone's life. The truth is in the pudding. One person with an EF of 10% may not be able to handle daily activities, while a different person can handle his daily. My husband could not take a shower without wearing himself out when his EF was 10%. I would stand outside the door and hear him taking deep sighs and breaths. Now with an EF of 40% it is the equivalent of a miracle to see the difference. Also, pray you get someone with a sympathic heart to review your case. firstname.lastname@example.org
Davida S' February 17 reply to Andrea M's February 16, 2001 - Hi Andrea, Flat out call your physician's office and ask for a referral to an electrophysiologist. He will give you the necessary referral. For malpractice's sake he doesn't want a record of you calling and asking for a referral and not give it to you. I have never had a problem getting a referral for me or my husband when I ask. Sometimes they want us to come in to confirm the problem but you have already had your confirming visit. It's the equivalent of a second opionion and you are more than entitled. Shoot from the hip with your physician. Ask him if this could cause sudden cardiac death. I would be curious to hear his answer. email@example.com
Walter K, February 17, 2001 - Hi, I would like to make a suggestion that people include their general location when they post something concerning problems with their treatment, problems finding doctors, etc,... Some people do, but frequently a post reads: "I can't find a CHF doctor in my area" or "My doctor is too abrupt" without saying where they live. It is possible that if we knew their general location someone would know a good doctor or clinic in their area which they don't know about and could recommend one. This is how I found my excellent CHF specialist and cardiologist. firstname.lastname@example.org
Ginger, February 17, 2001 - Come on, you guys, all this exercising an how much you do! I couldn't do half of what you all do when my EF was 50, let alone now that it has dropped. I am having a real tough time getting myself to get back on track to exercise. I don't know why but reading what all you are writing about your exercise makes me feel lazy enough to hopefully get off my rear and get out there on the stupid treadmill starting today. I want to thank you all for your motivation even though ya didn't know it! <g> You guys are the best there is and I am glad to have you all. Stay well. Hugs and prayers, Ginger. email@example.com
Joe S' February 17 reply to Joe S' February 16, 2001 - Hi Mike, One more quick thought. I have had a bad murmur since I had scarlet fever when I was five. I was told I had to lead a very restricted life style with no physical activity. Right after high school my father put me to work at a Pepsi Cola plant. The first job was putting empty cases on a conveyer belt, ten per minute. After 30 minutes of this I then went and sat down and watched the bottles come out of the washer. I thought I would die the first week but things got better and better. I worked my way through college doing this. The last few years I even stacked 55 pound full cases for a few hours a night at the rate of 30 per minute. All my symptoms of a bad heart went away for over 20 years. Some doctors even told me I never had a murmur. However, not keeping up the exercise and eating all the wrong foods caused it to come back with a vengance about 10 or so years ago. I am convinced if I had kept my body in shape, it would never have come back. What is your opinion? Joe S. firstname.lastname@example.org
Ophelia's February 17 reply to Brian's February 15, 2001 - Hi Brian, I know this will sound kind of weird but whenever my recipe - especially stuff like lasagna - calls for ricotta, I substitute low fat cream cheese - the one with 1/3 less fat. It works well for me and you can't really tell the difference, Ophelia. email@example.com
Bev T, February 17, 2001 - Hi all, I haven't posted recently but I have finally retired and am doing all the paperwork for disability. Just doing the paperwork for a medical retirement has exhausted me and I haven't begun to fight Social Security yet! There have been some encouraging stories posted here recently, so I pray that I have no trouble either.
I want to thank those of you who have posted about your heart transplants. The docs are getting better and better at transplantation. A relative of mine had the 40th transplant at our local center 14 years ago, and he's still kicking! That center has now done over 500. Keep that encouraging news coming. Bev T, age 57, ICD, DCM, diabetes. Mtnmama008@aol.com
Isabella S, February 20, 2001 - Hello to everyone, I just stumbled upon this site a few days ago and I want to say thank you to Jon for making this possible. I was diagnosed with CHF and arrhythmia last summer. I was misdiagnosed with asthma about 2 years ago and I'm just beginning to understand what CHF is and what I am dealing with. I have 2 children and I also take care of my grandparents - both in their 80s, I am in my 30s - so I am limited on how far I can travel to see a specialist.
I have questions that my local doctor is unable to answer and I was hoping that maybe someone here could explain a few things to me. I have shooting pains in my right leg that seems to only hurt when I am sitting and I have severe pain in the arteries of my neck. Does anyone else have these problems? My doctor just looks at me like I am from Mars when I mention these problems. Isabella. firstname.lastname@example.org
Bill B, February 20, 2001 - Hello all, Bill B here with a laugh at my own expense. As a career law enforcement officer I always knew the life style and donuts would take a toll and they did. I was just denied again for SSD and have been trying for 2 years. My EF is now 30%, down from 20% 18 months ago. I have had 5 MIs, CHF, CAD, and bypass - the whole 9 yards. I was denied by SSD because they say I can return to my law enforcement job without a problem.
My doctor has advised me not to return to work under any circumstance but I find it really unfair for these people to have such control on my life and to be so uncaring as to make this huge a mistake. Maybe it is a pay back for a ticket someone got. <g> Anyway I am so glad to hear some of you are doing so well and I know someday I will win this battle because all God does is good! It's just not my time yet. God bless, Bill B. email@example.com
Bob H's February 20 reply to Jon's February 12, 2001 - Hi, After Using MyoVive for 5 months, I had to go off it in mid-January and believe I am not doing as well since then. I am looking forward to it's being available again too. I am glad to know that you are following up on this. Thanks for this great site. firstname.lastname@example.org
Brian, February 20, 2001 - Hi, Thanks to all for the input on the cheese. I found that no one seems to know how much salt is in fresh ricotta but some good ideas on subs. I asked a dietitian at work and she seemed more concerned that I wasn't getting enough salt. Go figure, do we have to worry both ways? email@example.com
Jon's February 20 reply to Brian's February 20, 2001 - Hi Brian, No. Unless a CHFer gets very, very active, he will get enough sodium at 500mg daily. I have even researched iodine requirements with the help of my CHF specialist's head nurse and we're okay on that as well. Jon.
Beverly C, February 20, 2001 - Hi Guys, I am home from my in-stent radiation (brachytherapy). Nothing was any different while I was in the hospital than when I had 3 previous regular angioplasties. About 15 minutes after I got home, I began having pretty severe chest pains. I took a nitro and laid down, and it calmed down in a few minutes. I was very shocked. I've had chest aches off and on since that time. I called the cardiologist on duty and he poo-poo'd me off. He said it might be "bed rot" and to try taking 2 Tylenol and calm down. He is not my doctor and paid no attention to the fact I am an educated patient who has a lot of experience with restenosis. If this continues I will call "my" doctor tomorrow and see what he says. I am very disappointed so far. Beverly C. firstname.lastname@example.org
Mary Hickerson, February 20, 2001 - Hi, On my last post, my doctor took me off my meds for DCM. What a 2 years it has been since I was first diagnosed. I now have been med free for DCM since around September of 2000. My memory loss has improved as well as my fatigue. However, I do know that it is a big gamble being med free and my feeling of being better could only be temporary. This is a risk I will take for the time I have spent with my son, husband and entire family has been wonderful. It is awful to say that sometimes it takes bad news to bring the love out in a family. I still visit this site and keep up with everyone on a daily basis. May God grant peace, love and joy to each of you. Mary from Tennessee. email@example.com
Donna, February 20, 2001 - Hi, I have a question. A co-worker of mine was diagnosed with IDCM and CHF a few weeks before myself. She is now back to normal. How often can this occur? It was my impression that once you had CHF you always had it. Now this gal never saw a CHF specialist, just a regular cardiologist. She is being taken off all her meds but she tells me she still feels very tired. If you want to believe her doctor her heart is back to normal size and her EF is around 50%, so does this mean she is cured? Donna. firstname.lastname@example.org
Jon's February 20 reply to Donna's February 20, 2001 - Hi Donna, The answers are in The Manual. Jon.
Wiliam B, February 20, 2001 - Hi, On my workout bench I have a butterfly attachment that I would use 4 or 5 times several times a week. I cannot move the thing a fraction of an inch now. I lost 2.5 inches in my neck and 2 to 4 inches out of my arms and thighs. This was all in just muscle. I read somewhere that depleted oxygen supply is what makes the muscles lose their tone. The doc told me not to lift over 10-12 lbs. I had noticed a little loss of strength in the last year, but I guess the CHF was a gradual approach. My wife gets on to me about lifting and doing things that she says puts a strain on one's heart. She has been a diabetic about 30 years and has had CHF the last 2-3 years.
My thinking is that your body will tell you how much you can do and when you cannot do anything. Thanks to you guys for replies about warfarin. I'm still a newbie with a lot of "what happens" questions. William B. email@example.com
Carol's February 20 reply to Ann C's February 14, 2001 - Hi Ann, I am curious if your cardiologist has ever discussed either repairing or replacing your tricuspid valve, since it is leaking badly. I was in the same situation as you 2 years ago but I had severe leaking of my mitral valve, which was making my heart failure worse. I had surgery to repair the valve and now there is no leaking. This has definitely helped my heart failure. I still have cardiomyopathy but my cardiologist says that my condition is now stable so I don't need to be considered for the heart transplant list. I hope you can look into either the repair or replacement of your damaged valve before you are put on the transplant list. Anyway, best of luck to you. firstname.lastname@example.org
Autumn's February 20 reply to Joe S' February 16, 2001 - Hi Joe, I am so happy to hear you no longer have CHF. That must especially be an accomplishment when having a bad ticker for 56 years. I've had a bad ticker for 21 years with paroxysmal atrial tachycardia starting in 1980, valve regurgitation and some heart enlargement in 1987, then CHF in late 1999 and 2000. My CHF is gone for now, thankfully. Before I found this site I never knew it could go away.
I've started on distilled water because of my reduced kidney function but I'm not clear why so many with CHF drink distilled water. Would you be kind enough to explain it to me? Also, I was wondering why magnesium would hurt you? I've been taking it and it helps me sleep better but I do think it may be causing me problems with my hypercalcemia. My doctor says go ahead and take my calcium and magnesium because that isn't enough to effect the hypercalcemia but I seem to have a lot more muscle pain when I do. I am now starting to rotate taking the calcium-magnesium for a few days and then off for a few days to see what effect I get.
Three weeks ago I was referred to physical therapy and he has been treating me with back exercises and also deep muscle massage in my hips and thighs to break up the knots in my muscles. He cannot determine how much of the problem is caused from the hypercalcemia and how much from my herniated disk but things only got better when I spent a week off exercise. I cannot stay off exercise so I went back to it and the knots and pain returned. The PT is giving up. I am worried. How will I handle the pain and numbness? I cannot give up exercising since that is the only thing I have to take care of my heart. One of my medications is known to cause hypercalcemia but my doctor does not want me to go off it when I am only mildly hypercalcemic. My web searches show even mild hypercalcemia can cause the symptoms I'm having and is taxing on the heart, eventually leading to heart failure, heart block, and heart attack. I already have had the first two. At the end of this month I return to my GP and I will insist on getting referrals to see how bad my disc is and to see a nephrologist to see how bad my kidneys are and to find out what is causing my hypercalcemia. Meantime I'll try reducing my exercise to 4 times per week with less time per set, and a little less intensity. As long as I get to an aerobic level for 30 minutes I should be able to get the benefit for my heart. Thanks for listening. Autumn. AmberDawn-Blzn@webtv.net
Harry, February 20, 2001 - Hi Jon, Thanks for this site. I was a pastor and preacher for 35 years and am now age 58. I discovered this site last year and would spend my time weeping in front of the computer as I read and prayed for various persons who were posting, remembering my own circumstances of diagnosis with dilated cardiomyopathy, severe left ventricular dysfunction, single artery CAD with a 90% blockage of the LAD (stent inserted), and an EF of 10%. I was bedfast for 4 months with barely the ability to eat or toilet, sleeping 20 to 24 hours a day at first in the hot Central Florida heat of 1998 from May of 1998 to September 18, 1998. I was diagnosed May 19, 1998 as having DCM caused bya virus. My Social Security Disability was approved effective November 19. I had 3 additional prostate surgeries during all of this recuperation over the first 12 months and had a catheter over 120 days. I entered the hospital for renal failure in April, 1998; No fun.
However, thousands of persons were praying for me! Then I received my first and only 3 day dobutamine "holiday" in order to get from Orlando to Tampa General Hospital to be evaluated for transplant. My Vo2 score was 12.7 at first evaluation. I began ever so slowly to regain some strength after the dobutamine and was able to enter cardiac rehab for about 20 sessions, then the insurance carrier cut me off because I was only responding up to a certain point. I continued on my own at the local diabetes center where they would ask why I did it. I would say, "Because if I don't, I won't be able to do anything!" Of course the dobutamine has long since worn off, but the prayers haven't!
My meds included 75mg Coreg per day, 20mg Zestril daily, 0.375mg Lanoxin daily, one aspirin daily, 160mg Lasix daily, 40mg Klor-Con daily, and 4 types insulin injections at 200 to 250 units daily. My triglycerides were almost 3000, my cholesterol was almost 500 with out of control type 2 diabetes aggravated by the Coreg. My morning sugars were consistently in the 400+ range.
My meds now are 25mg Coreg twice daily, 10mg Prinivil daily, a baby aspirin daily, one mg Amaryl daily, and 45mg Actos daily. My morning sugars are below 120, my cholesterol is 218 and my triglycerides are 180. My latest EF estimate in January from an adenosine stress test is 30%. I also took the following vitamins: 1200 IU E, 200mg selenium, 120mg CoQ10, 25000 IU A, 1000 vitamin D, and one multiple vitamin. I have been off the transplant list since June of 1999. My quality of life has improved to being able to shower infrequently, drive a little, walk 150 feet with some pain, keep my feet down instead of elevated for longer periods of time, and os on. I have been to Alaska on a cruise in a wheelchair, but I made it. Sure, it was extremely tiring and I had to rest a lot when others were active but it was wonderful! There is hope! I would be happy to field any questions or talk to anyone who would like to, up to the limits of my strength. Harry M. LogoRhema@minister.com
Ginger, February 20, 2001 - Hey Jon, I was just wondering if you have any idea when we will be able to order Myovive again. The stuff is great and really beats all the pills. Hugs, Ginger. email@example.com
Jon's February 20 reply to Ginger's February 20, 2001 - Hi Ginger, I most recently talked to them today but have been unable to get past that "early Spring" estimate. That's as close as they will come to saying when it will be available again. :-( Jon.
Anna N, February 20, 2001 - Hi everyone, I gave Elavil a try and it has done nothing but cause side effects so far. My doctor said he will recommend disability at this point so I took the big step and told my boss today. It doesn't seem real after all the months of thinking about it. I do have a long-term disability policy that kicks in after 90 days with a partial replacement of my salary so I am more fortunate than many. It's still going to be tough though, and I am scared. I'll be applying for SSD soon and I appreciate the people who posted and e-mailed tips on that process. This is really a great place for support, and you are a great bunch of people! firstname.lastname@example.org
Richard Hennion, February 20, 2001 - Hi, Can someone tell me about weight loss with heart failure, DCM, and atrial fib? I'm a survivor of 7 years - some ok, some horrible. However, the last 3 - 4 months I've gone downhill dramatically dispite some pretty intensive treatment. The latest kicker is that I have lost over 35 pounds in a short time. It "ain't" all water since the muscle mass and fat layers are disappearing. Does anyone know the actual cause? What can be done to slow this weight loss? Can I look forward to gaining again? I blame a lot on the non-reversible atrial fibrillation.
I've been drinking Ensure on the advice of a GI doctor to increase nutrition but the stuff is expensive. My father died of DCM 30 plus years ago and as I remember he passed away shortly after a dramatic weigth loss. I'm amazed at how closely this condition has mimicked what I remember of his over these last 7 years. Thanks, Rich H. Richar3387@aol.com
Karen K, February 20, 2001 - Hi, Never a dull moment at our house! My daughter Wendy, who is 35 years old, had a lumpectomy 2 weeks ago. She saw the surgeon last week and told him we were trying to get her an appointment at Mayo Clinic. Yesterday when she called Mayo, she was told it could be 1 - 4 weeks before she could be seen. This isn't acceptable. She really needs to start treatment now since she will require both chemo and radiation.
Today she talked with Mayo again. She now has an appointment set for March 1. It is about a 5 hour drive from here. I fully intend to go with her. In the meantime it is Lent at church where I am the part-time office manager. This means extra services and extra bulletins so I now must try to do 4 bulletins and a newsletter prior to the end of February.
What I ask of all of you is your prayers. Pray for my daughter and her family. Also, please pray that I can be strong enough to deal with all of this. I need to be there for Wendy. She has 2 young children; her in-laws are going to take over their care, which is a good thing.
Oh yes, my doctors referred me to a dietitian for my "slightly elevated" potassium level. I believe it was 5.3 where 5.2 is the high end of normal. The doctors believe I can control this with diet. Interestingly, it is the foods like fruits and veggies, in addition to coffee and chocolate, that are high in potassium. I've stoppped drinking orange juice in the morning and am now drinking pear nectar. I'm decreasing my consumption of coffee. Over the past 3 days, I've managed to stay within the 80 grams of potassium a day which is the maximum I should consume. It will be interesting to see blood work after I follow this diet.
In addition, my family practice doctor of over 27 years is no longer going to work in family practice so the one person I know I can "vent" to is no longer available to me. He has been so supportive, even giving me a phone number where he could be reached while on a vacation. I'm going to miss him - a lot. Again, I ask for your prayers. Karen. email@example.com
Brian's February 21 reply to William B's February 20, 2001 - Hi, I've been thinking about this myself. I have using the old AMA (against medical advice) method for my strength training and lifting more than the CHF doctor said I should. I'm stronger but in hindsight I don't think it was a good idea. I think I over stressed myself doing this. Overall, I don't feel better and have more trouble walking. Of course I can't be sure this was the cause. That's my two cents worth. Everyone has to make up their own mind, but be careful. firstname.lastname@example.org
John, February 21, 2001 - Hello everyone, I was diagnosed in 1998 and haven't been here for awhile. My EF is up to 26% from 8 when I was diagnosed. My defibrillator hasn't gone off in almost a year so I am doing much better but am sick of not working and of taking the meds. John. email@example.com
Gus R's February 21 reply to William B's February 20, 2001 - Hi William, I'm no expert but I fairly well agree with your ideas on exercise. One can't get too carried away but our bodies do tell us when we've done too much. There's also the day or two later symptoms that can sneak up on us, but one learns about that quickly. The only reservations I have are if one's heart is oversized from CHF, exercise might make it worse. Also, some of us see our enlarged hearts shrink to a more normal size with the right meds and lifestyle adjustments, which might not happen if one was doing too much exercise. Ok, I talked that around in a couple of circles so it must be time to quit. I might have made a good politician. :-) Best wishes, Gus R. firstname.lastname@example.org
Ben B's February 21 reply to Gus R's February 21, 2001 - Hi Gus, I thought all of us were supposed to exercise, at least some. I never heard a theory about exercise not being good for people with an enlarged heart. I think almost everybody who has CHF has a slightly enlarged heart at least at some of the time. I agree you shouldn't overdo it. email@example.com
Ben B's February 21 reply to John's February 21, 2001 - Hi, I agree with you. Not working has been the worst part of this for me, after the initial onset. I'm surprised more people don't mention it. I was really depressed about it until I found other things to keep myself busy. I am presently on a program to get myself back to work but am still a little frightened about a relapse. firstname.lastname@example.org
Jon, February 21, 2001 - Hi everyone, About The Doctor's Page, it is still "evolving" as I stroke it to get it where I want it to be. I have added a link called "Talk to Dr. Silver." This goes to a free message board I set up that will be read by Dr. Silver every chance he gets. However, he will not post there! This is to prevent him from feeling obligated to answer lots of personal questions there. I will post there from time to time if I think I can help anyone but it is mainly for people to respond to general questions that Marc wants to ask a large group of CHFers - namely us. :-) It's a valuable addition for him as a practicing CHF doc and gives us a chance to be heard by him even if we don't get an answer. Suggestions and comments on the doctor page are welcome there as well.
Please note that although you cannot see it, Dr. Silver is getting all the questions submitted through that page! I vet them and send them on to him in a process that will improve quickly, as he and I communicate about how to phrase things and how to help the most people with this service. Please continue to submit all your questions and we'll work to get them answered somehow.
The following pages on my site have been updated:
Phyllis A, February 21, 2001 - Hello Jon and Friends, I want to reply to the comment about long time members not posting when they are doing better. Well my friends, I don't post much anymore because I'm ill most of time with newly diagnosed fibromyalgia and frquent trips to the ER. I don't get on the pooter much anymore and when I do I don't want to always tell of my sickness. I do want those who are newly diagnosed to know that there is hope. email@example.com
William B, February 21, 2001 - Hi, I ran the exercise topic by my doc today and he talked along the line of Gus R and Brian. With CHF it is much better to be on the light side of the workout scale than on the high side trying to push it to the limit. My doc confirmed basically what you guys said: That it is going to be lifestyle change and medicine that is going to produce best improvement. It is difficult to accept that things that use to work for health and physical improvement just do not work like they used to. Thanks, William B. firstname.lastname@example.org
Wayne S, February 22, 2001 - Hello Everyone, Since being diagnosed with DCM and CHF about a year ago I have come to the conclusion that I cannot work anymore. I worked for 35 years and I paid my dues. My retirement is not what I hoped for but it could be worse. I thank God for all the positive things in my life. I am a very lucky person to have lived without health problems for 48 years. I was able to raise my family with very few real problems. I always try to thank my lucky stars. I do not know how much time I have left but I am so glad that I can do what I want now. I do not care if I never work again. God bless everyone, Wayne S, DCM, CHF. I do get tired of medication but what is the alternative? email@example.com
Ginger, February 22, 2001 - Hi all, The ever loving exercise question! <g> I have decided that cleaning my house, sweeping floors and mopping them, all 4 rooms that are not carpeted is actually a lot of exercise in its own right. If we are supposed to stay on the light side then I need a maid! <g> Oh yeah, the laundry too. ;-) The treadmill actually looks easier then all this, don't ya think?
I go to the cardio doc tomorrow and will bring up this exerise question and I am sure we will not ever get any 2 docs to have the same answer. To be honest, emotional upset hits me harder then exercise does. With all the sick people in my life that I take care of and 2 teenagers, you can be sure there is a lot of it. Seriously though, Gino (our friendly doc) told me that our exercise was better if we didn't use our arms as much since the arms make the heart work harder. Stay well ya'll, you're needed here. Hugs and prayers, Ginger. firstname.lastname@example.org
Dana J, February 22, 2001 - Hi, About the exercise-no exercise issue, my doc also said very light exercise. My treadmill has a pretty sharp incline and is nonadjustable. My doc said to spend no more than 10 minutes a day on it, preferably 5 minutes twice daily. I'm following the diet she put me on and walking every day but so far I haven't lost any weight. Obviously a big part of this is fluid but the rest is just fat. Does anyone have any suggestions for weight loss? I've run out of ideas. email@example.com
Bob H, February 22, 2001 - Hi Folks, I just wanted to let you all know that I just came back from getting the results from my latest nuke stress test. I have a section in the front of my heart that is not receiving enough oxygen and the complete test was abnormal but my EF is up to 60%! I know that is a great number but I don't feel one little bit different or better than I have for the past 20 years. Does anyone have any ideas? It has gotten so bad that I can't walk 20 feet without popping some nitro and now the cardiologist is putting me on a continued release nitro pill. He was going to put me back on the nitro patch but I am allergic to the glue on the patch (so what else is new, huh?). Just a note to keep us old-timers up to date or is it the other way around? That's a memory for you! <g> Take care and try to enjoy life because it is just too short. Love y'all, Bob H. firstname.lastname@example.org
Ginger's February 23 reply to Dana J's February 22, 2001 - Hi Dana, I wanted to lose 10 to 15 lbs. I did the Richard Simmons' Diet and lost it, then I just sort of quit it but kept all junk food out of my diet and in the end, 4 months later I had come to lose almost 30 lbs or something close. I did walk 20 minutes a day on a treadmill, by 10 and 10 but with no incline since on incline I get multi-focal PVCs; lots of them, so I was told no incline.
Be careful though, when you lose the weight, especially if you lose it too fast and don't keep track like I did. It messed up a lot of my meds and that led to problems. I no longer diet and I eat a little junk food once in awhile but I have not gained any back. I still have the Richards Simmons' diet and food mover program, I think, if you would like to try it. Run it by your doc first though. I did, because it requires us to drink a lot of water. I got it ok'd but then I don't retain fluid much. I didn't want to lose the weight because I was heavy but because I thought it might help with my back problems. Of course it did not. <g> That's what I get for thinking, huh? ;-) Richard Simmons does have exercise tapes but some are a little tough and I am not allowed to do them. The only exercise I get besides what is in my previous post <g> is walking the treadmill, which I just very recently got back into thanks to all the motivation on here. That's one of the great things about Jon's Place. You can get motivation without people even knowing you are getting it! <lol> I did. Stay well, y'all. Hugs, Ginger. email@example.com
William B's February 23 reply to Ginger's February 22, 2001 - Hi Ginger, Taking care of a household is a lot of exercise in itself. My wife is confined to a wheelchair (power) and she still cleans with a dust mop and vacuum cleaner sometimes, and the arm motion she gets then wears her out on a bad day, so do not sell yourself short that you on the light side. I think that the inability to do things that were so easy and "normal" before is an emotional factor in itself. A household without the extra which CHF brings is itself difficult at best. By all resources, walking still seems to be best but even then, if the things that we are able to do and that we do wear us out, in my opinion the exercise question would be mute. Have a good weekend all, William B. firstname.lastname@example.org
Donna S, February 23, 2001 - Hi, I am 35 years old and was diagnosed with CHF due to undiagnosed cardimyopathy in June, 2000. I had an EF of 30% at the time of diagnosis. I am on Coreg, digoxin, Lasix and Altace. My last echo shows my EF increased to 40%, however I still don't feel very good. I am less tired but overall not a drastic improvement.
I know this disease is progressive but I can't get information on how much my life span will be shortened. My doctor gives me statistics but also tells me that the majority of those figures are based on elderly patients (60+). He said Coreg has not been used in the United States long enough to have true figures on longevity for someone my age. I realize he can't tell me how long I may have and I am not trying to dwell or be depressed about it but I have 4 children, one of whom is disabled and totally dependent, and the reality is I have to plan for the future. I still work although some days it is a struggle. Can anyone give me some answers either from life experiences or from research? email@example.com
Jerry, February 23, 2001 - Hello Everyone, I am glad to see there is a site like this for people to meet and chat. I am a new CHF paitent - one month actually. I'm 43 years old so this is all quite a shock to me. I never thought I'd go through this at my age but then I'm sure nobody thinks that they will at any age. There is a a lot of adjusting to do and changes to make. If anyone can make suggestions on anything, let me know. Thanks. firstname.lastname@example.org
Joe S' February 23 reply to Ginger's February 22, 2001 - Hi Ginger, I disagree with your doc. The whole purpose of exercise is to exercise the heart, that's why regular work generally doesn't do it. Does anyone else have any other ideas? Joe S. email@example.com
Claire E's February 23 reply to Ben B's February 21, 2001 - Hello to Ben and all, Claire E here! I read the posts about the adjustment phase to "non-working" and they brought back a lot of very painful memories. With all we have to deal with when we are first diagnosed with CM and CHF, the loss of ability to carry on in our normal jobs is not something we dwell on initially. Then one day it just hits you - at least that's how it was for me - "I am unable to work anymore, at all! Even if you held a gun to my head, it's over!" This probably sounds bizzare but that's how it hit me. I remember feeling like I had been punched in the gut and all the air sucked out of my body. It was a very painful moment. As some of you know, I was a cardiac critcal care RN when I got sick; nice irony, huh? I was 35 years old with 2 small children ages 2 and 5. People would say to me, "Things work out for a reason. Now you will be home with the girls, it's so much better!" I knew it was good for the kids but it still hurt like crazy that a very large part of my identity for the past 17 years was now gone.
I think that this is a really big issue for a lot of us, and one we may or may not feel comfortable discussing with our families or doctors. I got very depressed when I first stopped working and after awhile I realized that it wasn't going away. I felt worthless. I couldn't care for people anymore, I couldn't add to our family income, I couldn't work out like I used to and was gaining weight, and I was always weak and tired. I realized that I couldn't handle this alone and found a lovely man that I could totally unload on - my psychiatrist! I'm glad I started going to him. It has greatly improved the quality of my life. He said it is very common for people in this situation to have trouble adjusting to their new life style. I'm sure most of you made the transition more gracefully than I did but if you feel overwhelmed or depressed and it doesn't go away in a month or so, think about seeing a psychiatrist. I'm so glad I did! Peace and love, Claire E. Weezey62@aol.com
Sherrell G's February 23 reply to Dana J's February 22, 2001 - Hi Dana, Have you tried putting blocks of wood under your treadmill to help lower the incline? That worked on mine and really made a difference. firstname.lastname@example.org
Ginger's February 24 reply to Joe S' February 23, 2001 - Hi Joe, It wasn't my doc who told me arm exercising was harder on the heart and not such a great idea. It was a doc a lot of us know from Italy. I believe he knows what he is talking about. What he atually said was something to this effect - Ginger, housework is considered exercise but the wrong kind because you use your arms too much and that makes the heart work harder.
I asked my own doc yesterday about exercise and all he would commit to was, "Just be satisfied for now with walking your treadmill 20 minutes a day and the speed you have to judge by how tired you are and how your PVCs do as you go at no incline." I have an arrhythmia under the stress of inclines. I told you we would get no 2 docs to have the same answer. As we are all different individuals, we have different limitations. I didn't set out to start a debate on exercise. <g> However, I do believe the different opinions and different exercise that people do is good for us to know. All in all, it seems the biggest one we have in common is the treadmill. It's just the incline and speed that differs.
The only other news I got at the cardio doc's yesterday was to get my ACE inhibitor doubled. He decided my bronchitis was cleared up enough to do the Vo2 max test. Did you know they can do a Vo2 max test without you having to go on a treadmill or bike? I didn't; but they can. How it works I do not know yet but when I go for it I will let you know. Stay well, y'all. Hugs and prayers, Ginger. email@example.com
Jon's February 24 reply to Ginger's February 24, 2001 - Hi Ginger, I assume they are going to do a "chemical stress test" on you. I don't see how a true Vo2max test could be done without actual exercise but it could be "simulated" by stressing the heart with drugs to mimic the effects of exercise. That would simulate the effects of exercise on the heart but how it would do so with the lungs is beyond me. Let us know what goes on since that's how we learn!
About exercise, I have few comments even though they are very general. First, like Ginger said, everyone is different.
Second, like Gino told Ginger, exercising the largest muscles brings the best cardiovascular benefit whether you have CHF or not. The legs contain the body's largest muscle groups. Thus, exercises primarily using the legs involve the heart and lungs more quickly and more thoroughly than exercising any other muscle group. My own CHF doc told me to stop using arm resistance when walking so I could increase my walking time, which supports Gino's statement about us CHFers.
My doc also told me I could and probably should do some resistance training but never to use barbells since my heart simply isn't up to it, whether I think it is or not. This did not work out too well for me and I have since given up the dumbbell work.
One final thing to keep in mind is that when your doctor tells you that you no longer have CHF, that does not mean you now have a healthy heart! Remember that CHF is a set of symptoms. You can have a seriously weakened heart but if you respond well to aggressive drug therapy, you may not show any actual CHF. It's great to be "compensated" like that but it doesn't mean you can exercise normally without paying a heavy price. Some may be able to do so but most will not.
I stick to walking and a little housework, although I'm lucky to make it through cooking and dishes. Lifting is a very bad idea for me personally. I start going downhill and keep going downhill when I try it. The main thing is to ask your doc before starting a new exercise, and to pay attention to your poor old body! Watch out for that third day. That's when you're likely to get slapped by a "fatigue hangover." Do what you can as often as you can and if you can push it a little further, do so by all means. Just don't ignore your body when it says to slow down or stop! Jon.
Mike J's February 24 reply to Donna S' February 23, 2001 - Hi Donna, The first thing I did when I was told I had DCM was cry. I went to work and went to the restroom and cried. I came home at lunch and cried. I thought there was no hope. My EF at the time I was first seen was 35%.
Once I got over that, I asked every question that could be asked. My regular doctor took about 40 minutes to talk to me and tell me that modern medicine and attitude had a lot to do with it. Soon after my first echo, I had a cath done, which showed a 40% EF and my cardiologist said I was stable. My understanding is that if you get bad you get bad very quickly and if you remain stable and take your meds and do the right things you can look forward to many good years. No one knows how long a person can survive but my attitude makes me believe I will be here a long time.
That 5 year rule went out awhile back because of more modern meds. I was diagnosed 2 years ago and work out 4 times a week in the gym and work every day. I go on vacations, go shopping, and do just about anything I need to do. If you want to know exactly what your chances are, speak to your doctors and ask them some hard question. They will probably tell you no one knows exactly what our life expectancy is.
Jon has a wonderful site and he still does his thing 6 years after being diagnosed with a 13% EF. Modern medicine is wonderful and what you must do is keep your chin up, get answers, and have a great attitude. Please know that you are in our prayers and that we believe you will be posting here for a long time to come. Keep the faith and God bless you! Mike J. firstname.lastname@example.org
Lynn D, February 24, 2001 - Hi everyone, I am still hanging in there with an EF of 20% now. Has anyone been given information about using a jacuzzi? We have one of those tubs in our new house and I just used it for the first time. It made me feel really bad! Does it cause a problem with too much circulation, or is it the heat of the water? Thanks for any info. email@example.com
Jon's February 24 reply to Lynn D's February 24, 2001 - Hi Lynn, As far as I know, it is the water temperature. Hot water lowers blood pressure. If your BP goes down too far, it can be a real problem. Make sure you don't pass out, since drowning is a real danger. Jon.
Joyce Walters, February 24, 2001 - Dear Jon, It has been a very long time since I have been to the forum. I know there are many new namest. This is an update on me. I have just been approved for a clinical study called the Companion Study. This is a 5 arm study with all patients on the optimal medications for heart failure. One group gets CHF meds only while the other 4 groups get one of two kinds of pacemakers. The manufacture is Guidant. These pacemakers have not been FDA approved. I have been though all the pretrial testing and now I am in the waiting game; like I haven't been here before. :-)
The control nurse is on vacation next week so nothing moves without her. The ramdomization news will arrive March 7. If I am to receive a device, my surgury will be on March 8. This study will consist of 2,200 patients and 80 hospitals nationwide. I am counting they you have heard of this and that perhaps someone on the board may be in the study. Joyce. Jtravl@aol.com
Jon's note: My CHF doc is currently participating in this trial
Wayne, February 26, 2001 - Hi, I was just diagnosed with this. The next day they said I was severely anemic and I had to get a transfusion of 2 units. Does this come with the CHF territory or is this another problem I am going to have to face? The doctor has set me up for lower and upper GI tests. If anyone has any answers, they would be appreciated. Thank you and God bless you. firstname.lastname@example.org
Dana J, February 26, 2001 - Hi, Thanks to everyone for the weight loss ideas. I went out to the woods with my husband yesterday while he cut wood for our fireplace. I helped him toss a cord of wood onto the trailer and I had to stop every few seconds to catch my breath. By the time I finished, my heart was beating so hard I thought it would explode and I was completely winded. I'm paying for it today, believe me. My husband was angry with me but for some reason I kept pushing myself and I just couldn't stop. It's like I was trying to prove to myself that I could still do it. For the first time since being diagnosed, it really hit me that I actually have this. I sat down right there and cried.
A year ago, I could do a hundred times what I am doing now. It seems that as each day passes I do less and less and just feel worse. I don't think I could walk half a block if someone forced me. I keep thinking that this has to be a joke or that there is some magic cure and I am going to wake up tomorrow and be able to shoot hoops with my oldest or even just feel good enough to clean my house the way I used to. I can't even carry my little girl anymore. I don't know if this is denial or depression kicking in; maybe I'm just feeling sorry for myself. I just don't know how to accept what is happening. I keep wondering when it is going to get better instead of worse. email@example.com
Jon's February 26 reply to Dana J's February 26, 2001 - Hi Dana, It is a hard pill to swallow at times, isn't it? One thing to keep in the front of your mind is that you are still you. What you are able to do physically is part of you, but only part. I tossed 40,000+ plus pounds of Red Oak through a double roughing planer every day for many years but once I got sick, Jesus showed me that I am still a very valuable person, able to do, whether the same things I used to do or not. Seek out what you can do, reach out - not in - and flex yourself mentally and spiritually.
There are still worlds out there for you to conquer - they're just different worlds. They might include more in-depth parenting, personal spirituality, desktop publishing, web authoring, musical skills, forming a local support group, continuing your formal education online, or who knows?! The point is that you are still you and you still have a lot to offer just about everybody. Adjust your methods and get going. <g> Jon.
Ginger, February 26, 2001 - Hi, It's me again. First I am gone for a long time and now you can't get rid of me, sort of like the penny that keeps popping up, huh?! <g> Ok y'all, I have a question to ask and the answer is important to me. Is there anyone on this board who has DCM and an EF lower than 50% who does not take Lanoxin (dig)? If so, do you know why you don't take it?
This may seem like a stange question but after I get some answers I will tell you all why I need to know. My stepdad's EP study got changed to the first due to equipment problems. My brother's one remaining kidney is not functioning right and he will see a new specialist for it on the 6th so please keep them in your prayers. Thank you y'all. Hugs, Ginger.
PS. Just for the record, the reason I believe so strongly in what Gino tells me is because I have yet to see him be wrong. I have also seen him admit he didn't know when something came up he wasn't sure about. A lot of doctors won't admit to not knowing the answer to things and will just sort of try to side step it. firstname.lastname@example.org
Jon's February 26 reply to Ginger's February 26, 2001 - Hi Ginger. We don't mind; You're one of those bright shiny pennies people like to collect. <g> I have an EF of 40 - 45%, have DCM and do not take digoxin. I stopped taking it a long time ago because it was causing me "breast" pain, a common long-term effect in men (go figure!). I also stopped spironolactone (Aldactone) due to a "breast enlargement" which happens in about 10% of men taking it. Sorry ladies, but it's the wrong hormone change to enlarge your breasts! <lol> Jon.
Andrea M, February 26, 2001 - Hi everyone, I haven't posted in about a week and just wanted to thank everyone again for their thoughts and prayers. I have felt much better and have had fewer rhythm disturbances since about 4 days after my metoprolol was increased. I still feel thuds and tremors a lot but not much chest pain. I visit my cardiologist again in 10 days and will then have an echo and EKG. If that pain or fainting come back, I'll get to see an electrophysiologist. Again, thanks for all your help and just for being willing to share your experiences. God bless, Andrea M. email@example.com
John Len, February 26, 2001 - Hi Ginger, I tried to e-mail you an answer about your son and sleep apnea but the e-mail came back as undeliverable. John Len. firstname.lastname@example.org
Krista L, February 26, 2001 - Hello there, I recently had a heart transplant (February 2) due to my heart failure worsening. When analyzing my ex-planted heart, the pathologist said there were signs of vascularitis. Does anyone know much about this or where I can find more information? Thanks, Krista. email@example.com
Jon's February 26 reply to Krista L's February 26, 2001 - Hi Krista, Do a search for "vasculitis" or "angiitis" rather than "vascularitis" and see what pops up. I think he just meant the blood vessels were inflamed. Jon.
Harry Miller, February 26, 2001 - Hi Jon and everyone, Great discussion about exercise. When I consciously entered the world of CHF, dilated cardiomyopathy, CAD and diabetes type II, I began to learn that we are in a neuro-hormonal war with our bodies being tossed about every which way by the environment, our own hormones and nerves, and the medications we take. Upon reading authors such as Dr. Marc Silver's book, Dr. Bill Frist's book on heart transplants, and the Yale Heart Manual about coping and living with these problems, I commented that nobody was talking about returning to work again short of a transplant.
When I read the material on each of the medications I take: Coreg, Zestril, Lasix, etc,..., I stumbled onto the concept of "exercise intolerance" which kept recurring as I read. It simply means that a heart medically regulated to lower rate and blood pressure does not allow us to exercise with any great passion for a "training effect" as we might have in the old days before the onset of our current condition(s).
We must learn to listen to the limits which our bodies are telling us are reality now or pay for it with the "heart cruddies," tiredness and fatigue that are sure to follow when we overdo too much, too soon, too often. Each of you has my continued best wishes and warmest regards, and may there be hope within you! Walking in Him, Harry M. LogoRhema@minister.com
Gina's February 26 reply to Joyce Walter's February 24, 2001 - Dear Joyce, I'm a new poster although I've been reading the boards for a while. I have DCM and a host of other goodies. My doctor is trying to get me approved for a pacemaker also. He said there have been trials for a year or two with some very encouraging results. He has one other patient with one already who is doing well. The big hurdle is insurance of course, since my hospital is not part of the trials. I was going to list for transplant when he went to a conference about this trial. I have great hopes that it will go through. Until now I'd never heard of using a pacemaker for CHF patients. If it helps any, I live in northwestern lower Michigan, by the pinkie. We below the bridgers are refered to as trolls. Wishing a good heart day to all. Beagle2002@aol.com
Jon's February 26 reply to Gina's February 26, 2001 - Hi Gina, Please read the ICDs page for CHF pacemaker info including trials and more. Just keep in mind that not all CHFers will benefit from these pacemakers. I hear a lot of people talking as though all of us can benefit from these and it just ain't so. Your doctor should run an EKG looking for very specific information to determine whether to even have you tested further for such an implant. The current guess in the device "community" is that a maximum of 25% of CHFers may benefit from a CHF pacemaker implant.
For those who do have certain heart beat synchronization problems, such a device can be absolutely great but for those who do not, they will accomplish nothing but a huge drain on your wallet and possible complications! So please read up before considering such a device. If you think you might benefit, visit CenterWatch for trial locations. You can get to CenterWatch through my Links Page.
One general tip for reading posts here is that I link many words like "pacemaker" to a page on this site expaining the word. Click the links when reading posts and you'll learn a lot of new stuff. :-) Jon.
Jay's February 26 reply to Donna S' February 23, 2001 - Hi, When I was first diagnosed in November, 1996, my EF was 17%. My internist at the time told me I had a 50% chance of living longer than a year. I spent the following year in dread. As my imagined deadline came around and passed, I began to breathe a bit easier. Now going on 5 years later, my EF is still 17%. I can honestly say not a day goes by that I am not acutely aware of my mortality. However, along the way, as I was thinking, "I have no idea of how long I'm going to live," I realized that nobody else does, either. I'm going to turn 49 this year. I've had the wonderful, if tiring, opportunity to be the primary caregiver to my now 7 year old son for the past 4 - 5 years. The more we are involved in the daily business of living, the less time we have to consume ourselves with worry over what is to come. Hang in there. firstname.lastname@example.org
Claire E's February 26 reply to Jon's February 24, 2001 - Hi Everyone, I hope you all are feeling well. Like Jon, I walk as my main form of exercise. I am able to increase my time but very, very gradually. The walking is wonderful for my body and mind. I try to do a few very easy yoga poses nearly every day too. I have an extremely hard time lifting or carrying any amount of weight. I usually just don't do it and wait till hubby gets home to help. For me, lifting is a sure fire way to get instant chest pain. Even if I lift a small amount of weight and do it in a repetitive fashion, like carrying a lot of small piles of laundry back and forth to the laundry room instead of a few bigger ones, it can mess me up, particularly if I overdo it in other ways that same day.
With the 2 little ones to pick up after, the cooking, light cleaning (and I do mean light, bless my dear hubby for all he does), dishes, light shopping, and bath time, I am pooped! That's about all the exercise I can take at this point. I am looking forward to maybe being able to do a little more when the girls are a bit more self sufficient.
I must plead guilty to the "I'm having a good heart day - let me just trot around a bit more and get a little extra work done" trap. That flies for about 2 days before I begin to wish I had stayed in my usual mellow groove. Then it's fatigue hangover time, as Jon says. Anyway, my doc is pleased with what I am able to do and he cautions me against strenuous upper body work. My poor ticker just can't take it. From past experience, he sure is right! Peace and love to all! Jon, I hope the Linz had a positive experience checking out schools! Claire E. email@example.com
Ben B's February 27 reply to Harry Miller's February 26, 2001 - Hi, I'm not sure if I understand your comment, but Dr. Silver's book talks a great deal about trying to get patients back to work, and that many people do return without a transplant. I know many. I don't know if that's what you meant or not. firstname.lastname@example.org
Joshua, February 27, 2001 - Hi, I just got back from my specialist in Houston. My EF is 19% according to a nuclear stress test. My Vo2 was 16.1%. They were happy with my PFT results. The doc said that I was not yet ready for the transplant list. What I can't understand is that I've had CHF, CAD, and cardiomyopathy for 4 years after 5 bypasses, having both carotid arteries cleaned out and a stroke. The collapse of my law practice very nearly caused me to go crazy. First, I started cardio rehab and now I belong to a good health club, going 3 times a week. I exercise vigorously. I do a half-hour on the treadmill at 3.5 mph at 3% incline, I do 5 minutes on the stairmaster and about 20 minutes with weights. This does not include the stretching exercises or the 90 sit-ups but I still only have an EF of 19%? It doesn't seem to make sense. If I'm careful in what I eat and take a nap at noon, I do pretty much what I want but any stress causes severe fluid build-up.
Being a Christian, being out of work, being able to type with one hand, and knowing that ultimately we will all make a transition from this life to the next, I set about learning as much as I can about ancient Christianity, with the earliest documentation of religions. It has proven most interesting. For myself, I no longer dwell on the sorrow of loss of bodily function. I'm not sticking my head in the sand. I'm just looking at the doughnut, not the hole! So all you folks, take heart! No pun intended but turn to your spirituality and seek understanding. You will be amazed at what God has given us. Apparently, there is a reason I cannot improve my EF. God knows that reason and it is not for me to question but I'm still here and hope to post more often. email@example.com
Jon's February 27 reply to Joshua's February 27, 2001 - Hi Joshua, You mention stress as an indicator of oncoming edema. I assume you mean emotional/mental stress. Just a thought: Isn't it your reaction to such stress that causes problems, rather than the stress itself? Jon.
William B, February 27, 2001 - Hi, I just finished visiting the heart doctor on my 4 week follow up. He wanted to start me on Coreg on this visit. From what I have read, the side effects of that medicine seems to be worse than what I have and the way I feel right now. He did not seem to know the side effects of Coreg and wanted to know where and what study I got this information from.
My wife has been a diabetic for 30 years and we have been married for 12 years. Her diabetic related illnesses include CHF, renal failure, wallenberg stroke and several others. A possible increase in sugar was the standout data for me that made me want to decline the use of Coreg.
He mentioned metoprolol as another beta-blocker I could use. I have not been able to find any information on this medicine. Any links or info would be appreciated. My wife has been on the second opionion kick and I have the initial visit with a doctor at the state university heart clinic in 2 weeks. I do not know if this is a waste of time or not. I had an EKG, echo and heart dye test. Oh well, keeping peace in the family is the most important thing. Thanks for lending an ear for a sounding board. William B. firstname.lastname@example.org
Dana J's February 27 reply to Jon's February 26, 2001 - Hi again, Thanks for the encouragement, Jon. I didn't mean to sound so depressing and pathetic. This is just so frustrating that I tend to let it overwhelm me sometimes, usually after a long, hard day. I know there are plenty of people a lot worse off than I am. I pray for everyone here every day, hoping that we'll all have the strength to just take it as it comes, one day at a time. I have an appointment with my doc on Wednesday. Hopefully she will change my meds since they don't seem to be helping a lot. I think they are only making me even more tired than usual. My doc told me in November that she seriously recommends a pacemaker. I was dead set against it at first, but now I am reconsidering. At this point, what could it hurt? Everyone, take care of yourselves. I hope I didn't set anyone off into depression mode. I was just blowing off some seriously built up steam, Dana. email@example.com
Jon's February 27 reply to Dana J's February 27, 2001 - Hi Dana, You didn't sound pathetic, just discouraged. That's not an unusual state of mind for anyone who has a chronic illness, believe me. I don't think it matters whether there are others worse off. After all, there are always people worse off than we are if we look hard enough. Besides, people are all different. Some people can cope well with awful circumstances while others find mild turbulence very hard to handle; Nothing wrong with that. What matters is how we deal with our own situation whatever it may be.
I don't want to make a mountain out of a molehill but beware the, "What can it hurt at this point" view of things. "This point" may not be quite what it seems right now. You seem to be functioning quite well overall for some with a damaged heart. Because you're not feeling like you did when you were healthy, you may be reading your situation as worse than it really is. A little denial can really change a person's reality in their own mind. Been there.
Anything invasive can hurt you a lot. Once you start tampering with artificial control of your heart's rhythm - the rhythm that keeps you alive - you have started down a road that often cannot be reversed, so any side effects are permanent.
We accept a lot of things as safe medically speaking just because we don't hear horror stories about them through the press. That's dangerous. Ask the families of those who lived a horror story because of a "safe" medical procedure, implant, or surgery. Almost every procdeure has its share of such families. I don't want sound intimidating but Americans are waaaay too trusting of procedures that have a real potential for some long-term harm, if not short-term disaster. Of course, if you need such a device, it can be absolutely great! Just walk into the procedure with eyes wide open. Jon.
Dana J, February 27, 2001 - Hi, Here's something I forgot to add to my previous post. I take diuretics every morning, every day. They remove some of the fluid from my legs but the pitting edema is always there; it never completely goes away. I've tried zaroxolyn with Lasix, Demadex, Bumex, and another that I can't remember the name. Are these diuretics supposed to completely get rid of the excess fluid or are they just not working for me? Also, the right side of my body retains twice as much as my left side, especially my leg. Is this normal or am I strange? I saw a kidney specialist when this mess started and my kidneys are fine even though I have right side kidney pain. All of the tests came back perfectly normal. I'm just curious as to whether anyone else has these problems. Dana. firstname.lastname@example.org
Jon's note: Are you being seen by a CHF specialist? To me, it sounds like your meds other than diuretics need some adjustment and like your circulatory system should be checked for blockages or other problems. You might also look into Endecrin (ethacrynic acid). If Bumex isn't doing it, then either your diet is too high in sodium or you have kidney problems (and yes, I heard you, but,...), or you need to be looking at your heart function rather than at diuresis as the root of your trouble. Maybe your afterload needs a big reduction
Wayne S' February 27 reply to Dana J's February 26, 2001 - Hello everyone, I am feeling fairly decent. Sometimes I sit and want to do the things I used to. I worked loading ships and barges for several years. Now I cannot pick up the tools to do it with. I love to wade fish but I am not sure I can anymore. The heart hangover can be real bad. The best way I found to fight is to use the mind instead of the body. I try to do a little something physical everyday, mostly walking. I spend a lot of time cooking low sodium. I think I benefit from it a lot. Low sodium cooking can be good if done the right way. I do not dwell on my condition. It is hard to swallow that you are not the physical person that you used to be. You have your limits and you need to pay attention to them. Heart patients are still beautiful people. God bless everyone, Wayne S, DCM, CHF. email@example.com
Ginger's February 27 reply to Len's February 26, 2001 - Hi Len, It beats me why it wouldn't work. I just sent you an e-mail - let me know if you get it. My son was diagnosed with severe sleep apnea and I'm not sure what happens next but I do know he is only 19 and nothing better happen to him!
Every time I say "Okay, I have had all I can take," POW! something else happens. Maybe I shouldn't say that anymore! <g> Anyhow, about the Lanoxin thing, my PCP (I am in the middle of looking for a new one) tells me I should be taking it. Well, I am not on it. My cardio doc says I don't need to take it at this point. Who's right? I know it's probably the cardio doc but it gets confusing when you get 2 docs telling you to do 2 different things. This has happened before with the same PCP. He wanted me on Prozac. The cardio doc didn't. I don't think I am depressed anyhow, just trying to cope with all this family is going through. Needless to say, the Prozac scrip went into the trash. So that was why I asked the Lanoxin question. I have read about Lanoxin but am still not positive what is does except make the heart beat harder.
The only reason I am questioning it is because although up till now I have had complete trust in my cardio doc I have seen a couple of things lately that are making me start to wonder if I shouldn't be looking for a new cardio doc too. One example is the Vo2 test. Last month I was just getting over over bronchitis and what he says he thinks was asthma. So he said he would set up a Vo2 max test for 2 weeks later; enough time for me to be completely over it. Well, it never got set up. When I went back for my check up this month he said, I see we never did the Vo2max test. I said, you all never called me about it being set up. So he sort of just got quiet and said "Okay, let's set it up for about a week from now." Then I told him I needed refills on my meds. He was sort of flipping through my chart and said, "What all are you on, I don't seem to have that here and it should be." Hmmmmm, went my brain. How can he not know what all I am on and why is it not in front of his face if he has my chart right there? These 2 things are little things that I guess happen but it has made me have nagging little doubts which I don't like having. His thinking I had asthma makes me think too, because I have never had asthma in my life, and I know a lot of you were diagnosed with asthma when your SOB was actually CHF so that little doubt is there too. Was it asthma or was it mild CHF?
I have been with this cardio doc 3 years and I would hate to change but will if I need to. Maybe I am being to picky and hard on him? I mean those things I said that happened, well are they a big enough deal to worry about or am I being way too critical of him? I guess with all that is going on with the other people in my family right now and me being tired I am not sure I trust my own judgement. So if you have any opinions on all this, I will be happy to hear them. Hugs and prayers, Ginger.
PS. Please add my son Erik to your prayers for his sleep apnea problem. firstname.lastname@example.org
Jon's February 27 reply to Ginger's February 27, 2001 - Howdy-doo Penny, uh, I mean Ginger! <g> The Lanoxin issue boils down to just a few factors. Lanoxin makes many CHFers feel better, you know, the old quality of life issues. However, ir does not make us live any longer so many doctors now think it is unneccessary. However, it is part of the recommended meds for CHF in the official guidelines. The only drawback is that for people with certain arrhythmias, it can make them worse, although only very rarely to the point of danger; It just makes them more irritating.
As far as depression, I had migraines so badly once that I was off work for a month and spent a week in the hospital taking some high powered drugs to knock the headaches back. Naturally, my doctor sent me to a shrink to see if I was depressed. I spent hours with this guy and do you know what his final word was? He said, "Well, you're somewhat depressed alright, but no more depressed than you ought to be for someone in your shoes." <lol> Sounds about like you, Ginger. Don't sweat it.
About the docs, who knows? Trust your gut, Ginger. My CHF doc has his staff take a new list of my meds at each visit before he sees me. I also have to fill out a quality of life questionnaire. Then I have an EKG. The staff enters this stuff into the pooter that is in each room. Doc Porter sits down with my chart in front of the pooter and reviews the info the nurses took before we get started. However, his practice is huge so he has more resources than most. However, any doctor should always review a list of current meds in the chart before talking to a patient.
On the test scheduling, I have to tell you that medical offices are so buried in regulations and insurance paperwork that I am surprised they can schedule anything, I cut staff a lot of slack on this these days. I try to take an active role, getting the lab phone number and scheduling my own tests. It's going to get a lot worse now that HHS is throwing a bunch of new privacy regs into the works and not giving medical practices and hospitals the time or funding to comply. In fact, as the feds require more expensive procedures, they are actually cutting funding; Sort of counter productive, you know. Brace yourself for a lot of communication problems on healthcare issues from now on, thanks largely to Uncle Sam and legions of lawyers. Doctors are having to be more administrators than doctors and it is making a bad situation worse as far as doctor-to-patient communication goes.
I still say trust your gut above all else, though, Ginger. Hopefully, others will also comment. Jon.
Gus R's February 27 reply to Ginger's February 26, 2001 - Hi Ginger, I took Lanoxin for several years but stopped a couple of years ago. I'm nuts, so my experiences with Lanoxin should not influence anyone's decisions, and no one should alter their meds without their dox approval.
I was going through a rough time with symptoms out the yazoo, when I noticed that some of the worst episodes were occurring within an hour of taking the Lanoxin. I cut the dose in half and thought there was an improvement, so I stopped it entirely. I was happy with that decision for a few weeks and then decided it hadn't really made any difference and took a half dose. I thought I was gonna die, with SOB, syncope, and some of the wildest chest pains I've ever had. As soon as I recovered a little, I disposed of all the Lanoxin in the house and haven't touched it since.
The next time I saw the heart doc I told him about it, and he said he had never seen that in any of his patients. When asked if I should try it again, he said no. When asked if he thought it was all in my head, he said he doubted it but whatever caused the symptoms, if they bothered me that much, I should not take Lanoxin. Best wishes to all, Gus R. email@example.com
Lee R's February 27 reply to Ginger's February 26, 2001 - Hi Ginger, Me too! My EF went from 29% to about 40% and my physician gradually took me off digoxin. First we cut down by half a pill and I just this week gave up the other half. His reasoning was that my EF is up now and I'm able to moderately exercise and while he said the digoxin does help the heart contract a bit stronger, it (the digoxin) has not been proven to help us live longer like beta-blockers and ACE inhibitors. The whole thing is a little scary to me because every time I get a shock from the ICD my heart seems to go into a-fib, I go to Club Med, and they use digoxin and something else to control the a-Fib but one less med is worth trying. The doctor did mention if I seemed to get more PVCs that I could go back on it. Bestest to you all, Lee. LeeJRoush@msn.com
Patrick, February 27, 2001 - Hi, I am 45 years old and have had CHF for 8 years. My EF has steadily been at 21% the past couple of years however it has been as low as 11%. I am finding it increasingly difficult to work. My concerns deal with applying for Social Security Disability. Do I have to stop working completely to apply? If not, what are the limits on working while collecting or applying for disability benefits? I have a wife and 3 minor children. I need whatever advice I can get and would appreciate any insight. Is someone with my EF a given on a disability application? What is the waiting time frame? Thanks. firstname.lastname@example.org
Richard B's February 27 reply to Wayne S' February 26, 2001 - Hi, Regarding the question about anemia, I had the same problem and it turned out to be a gastrointestinal problem. The bleeding was enhanced by Coumadin. Prevacid took care of business. I was on an iron supplement for a month. Richard. email@example.com
William B's February 27 reply to Joshua's February 27, 2001 - Hi Joshua, I have been self employed for 32 years and I am sitting by and watching the total collapse of everthing. I am fast appoaching the magical 60 days that the banks give you. I am watching more in amazement than anything else. I told my banker Monday that never in my wildest imagination did I ever think that everything would turn so sour so quickly. I guess selling to the public for over 45 years had already destroyed what little sanity I had a long time ago so I had very little to go crazy with. <g> I think it is sort of like an old man once told me: Death has no sting, it is the dying that will kill you. I think that once we accept that what happen to this body and things that happen on this earth is not as important as where and with whom we will spend the hereafter. God bless, William B. firstname.lastname@example.org
Ruthie A, February 28, 2001 - Hi all, Good news! Hubby got a job and began work this last Monday. He was out of work for a few days short of 9 months. It is a good paying job but we have to move, but who's complaining? <g> Our only problem is that pre-existing conditions last for a full year with our new insurance. So as far as my CHF is concerned I am in the same boat as when hubby was unemployed. We are going to be accumulating more debt, which is doubtful that we will be able to pay off anytime in the near future. Added to our debts from unemployment, we are in financial crisis here and may have to file bankruptcy, but at least we have a job and for that we are grateful. Celebrate with us, Ruthie A. email@example.com
William B, February 28, 2001 - Hi, I have always wanted to know everything I could about what I was interested in: gardening, remodeling, etc,..., and I used to buy every book on that subject until I got another interest, and then the same thing. CHF has been forced on all of us and I am trying to find all I can about this "new interest" of mine. We all have a great resource open to us via the web.
I really liked Jon's reply about the doctors to Ginger. We should ask them questions about our medicines and the effects they will have on us but we should also be informed patients so we can ask questions that relate to our well being. After all, doctors are only human and have no ultimate answer. We should be as concerned about our health matters as we are about our spiritual matters. I believe that we should weigh the doctor's answers in relation to our total enviroment. Only each of us knows what we deal with and not even the best shrink can get to the root of our basic problem if we chose for them not to. Sorry for standing on the soap box and being so long winded, William B. firstname.lastname@example.org
Davida S' February 28 reply to Patrick's February 27, 2001 - Hi Patrick, The doctor diagnosed my husband as disabled early on. It scared us to see this but his doctor said in the event we applied for disability it would be noted early on from the doctor's point of view. Work with your physician and let him know what your plans are and find out for sure whether he agrees that you are disabled.
You have to be disabled for 6 months before you can get actual cash in hand from SSA. My husband did not work during this 6 months. He got disability income from his job that first 6 months to help out. You can work after you receive disability but be very careful. You don't want them claiming you can work some of the time - why not work all of the time, then they might suspend your benefits. My best advice is to talk to the SSA. They have literature they can send you and a rep will be glad to talk to you over the phone. Look them up in the blue pages of the phone book. email@example.com
Jon's note: The free SAD software is very helpful for SSA contact info
Thelma, February 28, 2001 - Hi, There has been a frequent thread on this board about experiences with Coreg. Prior to starting that med approximately a month ago, I was leery about the side effects and wasn't sure what was in store for me. Well, I'd like to report some of my initial impressions of changing over from Zebeta to Coreg in hopes of helping others who may be starting Coreg. I started at 3.25mg twice a day and by the third day I couldn't get out of bed. I had that "hit the wall" feeling, and then some. Well, stupid me took the drug together with my enalapril (Vasotec). After making some adjustments in my routine, I was able to get up to 12.5mg twice a day and to be honest, I feel the best I have in a long time. Sometimes I do feel some chest tightness and I have mild asthma possibly due to the alpha-blocking effects but that's about it. I know I still have a way to go to get up to 50mg twice a day (yikes!) but so far, so good. Has anyone out there made it up to 50mg twice a day? Thelma, EF 40%, up from 30%. Tcull@prodigy.net
Pam A's February 28 reply to Patrick's February 27, 2001 - Hi, I was diagnosed with CHF several years ago. I kept working but steadily had a harder time working as a dental assistant. Finally I applied for SDI in April, 2000. I was still working a couple of days a week. I was told that it would take 3 months to determine if I qualified and I could get full disabilty and still earn up to $300 a month. After 2 months I was notified that I qualified and began receiving payments in November, 2000. If I had any children under 18, they would also receive payments. I don't work at all nor do I have younger children but I had no trouble getting it. I hope you have as easy a time as I did. Good luck! firstname.lastname@example.org
Ginger's February 28 reply to Wayne S' February 27, 2001 - Hi Wayne, My stepdad is pretty anemic and they have him on iron. He has been anemic for years, since his first heart attack and triple bypass. One of his docs say it is due to the heart/lung machine they use during the surgery. One says he just doesn't know why. They have run every test you can think of to look for internal bleeding except for exploratory surgery and have found nothing, so they just keep him on a certain amount of iron. The only real drawback to a high dose of iron is that it can cause constipation so they put him on a low dose of a stool softener.
Jon, as I have a PPO and not an HMO insurance, with my PCP I also schedule my own tests. He gives me the paper work for the test and I go pick out a lab or hospital or clinic where they do that particular test out of my insurance book. My PCP prefers it that way. It keeps his staff from having to do it but with my cardio doc, he prefers to set them up himself. In fact, the first of this month my insurance company changed networks and all of my docs are not on it except for my cardio doc. So he told me to bring him my book and he would help me find new docs, preferably ones he knows.
Oh yeah, due to my arrhythmia problem under certain kinds of physical stress like inclines, stairs, and carrying things very far, I finally swallowed my pride and applied for the "Funny looks at me" sticker for my car. <g> You still have the site listed for the bumper sticker and tee-shirts for this, right? I want one!
Jon, as for your doc, he sure does a lot of things when you go in that mine doesn't although mine does have a pooter in every room. He is going to do blood work my next visit on the 23rd, and that will be the first time he has done any blood work in about 6 months. I haven't had an EKG done by him in probably over a year even though he does have the machines there. I am usually in and out of his office in about 15 minutes when I go for my checkups, which are every other month. Right now they are every month due to increasing my ACE inhibitor. I thank you for your reply and opinion and look forward to hearing from some others. I know I can't be the only one who ever started having doubts about their cardio doc.
Wayne, I hope what I told you helped in some small way. Last but not least, please keep Sarah F and Joy in your prayers. They are both having some tough problems to deal with right now. I know they won't ask, so I am asking for them. ;-) And I thank you all from the bottom of my tired heart for being here and being such a great support group. I am so thankful Jon has this site for us. I think a lot of us would be lost without it. I know I would be. Hugs and prayers from the doubting Penny. <g> email@example.com
Jon's note: You can get the tee-shirts and bumper stickers through the link near the top of this page. My CHF doc visits take about 40 minutes or so, not counting the waiting
Joe S' February 28 reply to Wayne S' February 27, 2001 - Hi, Years ago a friend of mine was crying because he was diagnosed with CHF and had to give up playing sports. I had a hard time sympathizing with him because I was never able to play sports, run, or go on mountain hikes. Of course I never had to take gym in high school either. <g> What you've never had, you never miss. There are always other things like learning things few others know.
One more thought on exercise: When I increased my walk 2 years ago to a country road which had several small hills up to 30 degrees, I had to stop and rest 5 or 6 times for several minutes. Now I can go the full mile and a half and even go up steeper hills without breathing too hard. I am still going to argue that we have to stimulate the heart to do any good. Joe S. firstname.lastname@example.org
Jon's February 28 reply to Joe S' February 28, 2001 - Hi Joe, Okay, I'll bite on that one. <lol> I think that for CHFers, any exercise is good exercise. My own exercise has grown less and less the longer I've had heart failure, not because I don't want to do it but because I just plain can't do it. Remember, I'm the guy who got up at 4:30 AM every day to lift weights before going to work in a lumber mill, for many years when I was healthy. The thought of exercise doesn't bother me.
However, recent studies (one example is here) have confirmed that you do get benefit from exercise that only lasts a few minutes and never gets your heart into any target range. Naturally, if you can reach such a rate and duration, you'll get more benefit but with a weak heart and taking beta-blockers, this just isn't always going to be possible. Everyone is different and doing the exercise you do would land me in the hospital. With that said, I do exercise!
My point is that we need to stay as active as possible rather than focusing on an exercise "program" as being more important than daily activities. I personally believe that daily activity is more important than structured exercise. I may be wrong but that's what I think. ;-)
Doing a few household chores every day, strolling around the mall with our family, going to church activities, walking the dog and so on, not only provide exercise but keep our minds active and our attitude good. Exercise comes in many forms and structured daily exercise is very important, but do what you can and if it doesn't meet goals of heart rate or aerobic zone or duration or speed, don't sweat blood over it. Do what you can and do it regularly and it will help you feel better and live longer.
I think one thought behind a lot of exercise questions I receive is this: "If I don't have much energy, should I do my chores and skip the exercise, or should I do my exercise and skip the chores?" It usually isn't said that bluntly but I think it's always there. My thought is that I will choose the chores or other activity if I simply cannot do both that day. Them's the Jon thoughts for the day! <g> Jon.
Sherrell G, February 28, 2001 - Hi, I thought I would share my Coreg experience. I was the first cardiomyopathy patient for whom my cardiologist prescribed Coreg. He started me at 12.5mg twice daily and one week later increased the dose to 25mg twice daily. For eight months I felt horrible and I had no improvement in my EF. Then one day, I felt like I was going to live. I stayed on that dose for 18 months, then my ICD doctor felt like I needed to increase.
After conferring with my cardiologist, they agreed to increase the dose to 37.5mg twice a day and then go up to 50mg twice a day after one month. Their thinking was concerned with longevity of life. However my BP dropped and stayed in the 80s over 40s and my pulse stayed in the 40s. My PVCs worsened and I experienced many pauses and PACs too. My menses stopped and I experienced periodic nausea and vomiting. After blood studies, they cut my digoxin dose in half but this did not help. I had to stop my cardiac rehab program. I was not able to function normally. Finally, I said forget longevity - I need to be able to enjoy life a little. They agreed to cut my Coreg dose back to 37.5mg BID.
My symptoms did not improve but continued to get worse. Finally, 5 weeks ago, they cut me back to 25mg twice a day. I am just now starting to feel better since my BP and pulse are more stable and my period came back but all the nausea and vomiting has caused so much irritation in my stomach that I am now having to see a gastro doctor. I lost 17 pounds but in a way I would not recommend. ;-) My EF remains 25%. I do think Coreg helps me feel better but we must be very careful with the dose. Apparently my doctors need to raise and lower doses in smaller levels. Has anyone else had N and V problems and problems with menses? email@example.com
Jon's note: Coreg should never be started at a dose higher than 3.25mg and dose increases should be at least 2 weeks apart - per the manufacturer. Doctors are supposed to read this advice, which is packaged with and comes with the drug itself. Your doctors were not on the ball - bummer
Jamie S, February 28, 2001 - Hello Everyone, I'm a, "old-timer" checking in. I had an echo done today and my EF is still in the 70s. My new doctor thought he heard a murmur. Well, that caused me to panic thus causing him to write a prescription for the echo. I'll have to wait for the full report regarding my heart valves. No one ever mentioned any valve problems even when I was at an EF of 30% with some enlargement of the heart. I sort of doubt he heard anything and he truly said in in passing, "There's your murmur." I said, "What murmur? I don't have a murmur!"
Anyhow, I am now 31. I was 27 when I went into v-tach and found to have PPCM. In 1999 I was taken off Coreg and am still off all meds. Are murmur's bad? How much should I be freaking out now? I feel good but it will still be a long week or two before I get the full report back. Take care everyone and to all the newbies, these people are strong and knowledgeable. You have found a great place to learn, be supported and support. My best to all of you, Jamie. firstname.lastname@example.org
Gus R's February 28 reply to Patrick's February 27, 2001 - Hi Patrick, Jon has some very good Social Security Disability information and links at: http://www.jonsplace.org/CHFssd.htm. You can also find information by searching The Archives of the posts. In the past I've put in my 2 cents worth on the subject but many others posting here disagree with me. That's okay - they might be right and I hope they are but I still have my opinions.
Firstly, I don't think there are any givens with the SSA. They have guidelines but their case-by-case decisions vary from day to day, place to place, and possibly by the phases of the moon. The SSA says, "First, we find applicants for Social Security Disability Insurance or Supplemental Security Income benefits not to be disabled if they are working and performing substantial gainful activity, regardless of their medical condition." To me that means anyone who works and earns more than $740 per month is out. I agree that a person whose doctors say is soon going to drop dead trying to support themselves should get some consideration but under the SSA's rules I don't see how it can happen.
The time required to be approved also varies greatly. I think 10 to 12 months is very common but some here at Jon's Place have whizzed through it in just a couple of months. The whole process is rather like jumping out of an airplane with a parachute. One knows how it should work, but,... Best wishes to all, Gus R. email@example.com
Gaile, February 28, 2001 - My EF has improved from 20% two years ago to almost 50% now, which I am told is almost normal. I recently moved to a different state and a new CHF specialist. I still have significant swelling in my feet and ankles (about 1+ pitting edema), for which I continue to take Lasix, Aldactone, and Triameterene HCTZ. My new doctor told me on my last visit that my edema is not due to my CHF. He said it was "venous insufficiency" in my legs
and that I should wear Jobs stockings for it. However, he did not take me off the 3 diuretics I still take.
I did some research on venous insufficiency and discovered that it is basically varicose veins. I have no visible veins in my legs at all. I'm confused because the symptom that first got me into a cardiologist's office 2 years ago was my terribly swollen ankles, a classic CHF symptom. Do any of you know anything about this? Thanks so much! firstname.lastname@example.org
Joe L, February 28, 2001 - Hi everyone, I have been recently experiencing a very fast heart rate with the mildest of exertion. I have timed my pulse at anywhere from 150 to 200 bpm. Even walking the one flight of stairs to my bedroom brings on this tachycardia. It has been going on for about a month now. I am scheduled to see the doc next week but I am thinking of calling him to go in sooner. Any thoughts or suggestions would be greatly appreciated. I am concerned that this tachycardia is sign I am getting worse. Thanks for listening, Joe L. JTLucido@aol.com
Stephanie, February 28, 2001 - Hi, My Coreg experience has been fairly good. The doctor actually apologized ahead of time and told me that the Coreg would probably knock me on my rear. He hated to do it but thought that it was best. I started on 3.25mg twice a day and then increased every few weeks. I am now at 18.75mg twice a day. I am feeling much better and have experienced very few side effects. I am probably extra wiped out the first few days after an increase. They haven't increased it more because my blood pressure drops too low. So I guess what I'm saying is that you never know until you try. Good luck, Stephanie. email@example.com
Ophelia's February 28 reply to Sherrell G's February 28, 2001 - Hi Sherrell, When I was diagnosed with cardiomyopathy, I was started on 3.25mg of Coreg then it was increased every 2 weeks, like Jon said. I had PVCs at 12.5mg twice a day so my dosage was reduced, then increased again. I am currently on 25mg twice a day and I feel fine. This is the best I've felt. I used to feel pretty bummed out with the other dosages and I never thought I'd get used to Coreg. Nausea, vomiting and diarrhea was a way of life for me and I never knew which of my 5 medicines caused it but everything's back to normal now. I had the opposite problems with my menses but it was blamed on Coumadin. firstname.lastname@example.org
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.