Barbara 10-1 seek biventricular pacemaker experiences & more
Rick 10-1 seek Disability psychiatrist experiences
Jon 10-1 bigeminy, trigeminy
Sheryl 10-1 what is fake air?
Katherine 10-1 biventricular pacemaker experience update
Jon 10-1 yuck
Ben B's 10-1 reply to Jon's 10-1 bigeminy
Jon's 10-1 reply to Ben B's 10-1 geminies
Scott Brown's 10-2 reply to Wayne's 10-1 EF measurements
Jacky's 10-2 reply to Jon's 10-1 meds' side effects
Jon's 10-2 reply to Jacky's 10-2 meds
Rick 10-2 disability board is pushing it
Carl CG 10-2 Insync ICD - seek experiences & more
Carl C G's 10-2 reply to Jon's 10-1 PVC experience
Jon's 10-2 reply to Carl C G's 10-2 PVC experience
Mel G 10-2 PVCs, arrhythmia, pacer, ICD experiences
Jon 10-2 feeling better, mailings
Sherishe 10-3 seek opinions on elective surgery
Dorothy Powell 10-3 thanks
Ray Q 10-4 personal web page
Pat L 10-4 sugar and PVCs, diabetes & more
Scott Brown's 10-4 reply to Sherishe's 10-3 vasectomy may be a better idea
Jon 10-4 update
Tracey C's 10-4 reply to Sherishe's 10-4 vasectomy
Tracey C 10-4 I did get a life insurance policy
Kathy 10-5 seek CHF doc in western New York
Amelia 10-5 update, has anyone else gone through this?
Jon's 10-5 reply to Sheryl's 10-1 fake air and more
Jon 10-5 Mailing on CoQ10
Amelia's 10-5 reply to Jon's 10-5 feeling badly
Jon's 10-5 reply to Amelia's 10-5 feeling badly
Ruthie A 10-7 Charcot Foot
Joe S' 10-7 reply to Amelia's 10-5 valve surgery update & more
Tom S 10-7 living with CHF
Jacky 10-7 is insomnia part of CHF?
Jon's 10-17 reply to Jacky's 10-7 insomnia , CHF, and doctors
Hal 10-7 how to lose weight with CHF?
Tom S' 10-7 reply to Jon's 10-7 insomnia tip
Derald's 10-7 reply to Rick's 10-1 psychiatric symptoms & more
Derald's 10-7 reply to Sherishe's 10-3 vasectomy or tubal ligation opinion
Derald 10-7 weight gain questions
Janet T 10-7 insomnia and CHF experience
Scott Brown's 10-8 reply to Hal's 10-7 losing weight
Ruthie A's 10-8 reply to Jacky's 10-7 insomnia and CHF
Sheryl C's 10-8 reply to Hal's 10-7 losing weight - carbohydrates
Tom S' 10-8 reply to Derald's 10-7 frustrating weight gains
Tom S' 10-8 reply to Ruthie A's 10-8 insomnia
Jon's 10-8 reply to Ruthie A's 10-8 page updates, insomnia and CHF
Jacky's 10-8 reply to Jon's 10-8 insomnia and CHF
Jon's 10-8 reply to Jacky's 10-8 Ambien, becoming addicted
Amelia's 10-8 reply to Joe S' 10-7 thanks, getting things off chest, update
George 10-9 my plan for feeling better
Ruthie A's 10-9 reply to Tom S' 10-8 insomnia
Russell 10-9 insomnia
Jon's 10-9 reply to Russell's 10-9 insomnia, drugs
Dorothy Powell 10-9 insomnia, drugs
Janet T 10-9 insomnia, drugs
Barbara M 10-9 insomnia, drugs
Michael 10-10 prostate enleargement question
Judi 10-10 thank you for the site, intro
Jon's 10-10 reply to Judi's 10-10 saving money & misery later by acting now
Carl 10-10 heart pumps, drugs & more
Jon's 10-10 reply to Carl's 10-10 heart pumps, Xanax
Natalie 10-10 like the site, low sodium boullion & more
Jon's 10-10 reply to Natalie's 10-10 donations
Hal's 10-10 reply to Scott's 10-8 weight swings & more
Hal's 10-10 reply to Sheryl C's 10-8 weight, carbohydrates and more
Jon 10-11 new set of urls available
Cat 10-11 sleep/wake rhythms url
Scott Brown's 10-11 reply to Judi's 10-10 insomnia
Fred 10-11 can memory trouble get worse? & more
Tom S' 10-11 reply to Judi's 10-10 health care without insurance experience
Jacky's 10-11 reply to Barbara M's 10-9 seek zopiclone info
Jon's 10-11 reply to Jacky's 10-11 zopiclone info
Hal's 10-11 reply to Tom S' 10-11 where do you live? & more
Hal's 10-11 reply to Jacky's 10-11 my insomnia experience
Myrtle C's 10-11 reply to Jacky's 10-11 meds for insomnia
Myrtle C's 10-11 reply to Sheryl C's 10-8 diets, weight gain & CHF
Gail 10-12 weight, exercise and insomnia with CHF
Sheryl C's 10-12 reply to Myrtle C's 10-11 diets, weight loss with heart failure
Joe S' 10-12 reply to Tom S' 10-11 health insurance and services
Jon's 10-12 reply to Joe S' 10-12 I disagree
Tom S' 10-12 reply to Hal's 10-11 managing on limited funds
Amelia's 10-12 reply to Jon's 10-12 health insurance in Maryland & more
Patty R's 10-12 reply to Jon's 10-12 health insurance
Hal 10-14 testosterone levels?
Tom S' 10-14 reply to Patty R's 10-12 health care benefits on low income & more
Joe S' 10-14 reply to Jon's 10-12 individual situations
Jon's 10-14 reply to Joe S' 10-14 individual situations & more
Catherine L 10-14 seek thoughts or encouragement
Barbara's 10-14 reply to Jon's 10-12 affording health insurance
Myrtle 10-14 affording health insurance
Hal 10-14 what about curcumin?
Kathy 10-14 what does reopened VSD mean?
Mel G's 10-14 reply to Catherine L's 10-14 some thoughts
Joseph P's 10-15 reply to Kathy's 10-14 echo techs can be wrong
Stan Fredette 10-15 seek others' experiences
Phil's 10-15 reply to Fred's 10-11 memory and concentration loss
Jon's 10-15 reply to Phil's 10-15 memory and concentration loss
Jon 10-15 Xanax
Katherine's 10-15 reply to Phil's 10-15 memory and cognitive loss
Kathy H's 10-15 reply to Joesph P's 10-15 techs, docs, and reports
Rick M 10-15 mental alertness and memory with CHF
Barbara, October 1, 2002 - Hi, I had a biventricular pacemaker put in on September 9, 2002. I have been told that it is to synchronize my heart. I have CHF and dilated cardiomyopathy with an ejection level of less than 30, with a left bundle branch blockage. They said it should really make a difference, but is not a cure.
I would like to know if anyone else has had this procedure and how they are feeling. I have finally gotten to where I don't feel every heart beat, but do feel something when I bend over, like a kick in the ribs. Has anyone out there had this? Also I have neuropathy in my feet. Is all of this normal? email@example.com
Rick, October 1, 2002 - Hi, I put in for total disability in August due to my CHF (EF 30%), diabetes, spinal stenosis, 3 herniated discs, sleep apnea (pulse oxymetry drops to 70% at times when asleep), and situational anxiety. I have now been told I need to see a psychiatrist about the anxiety. I told them that the anxiety is the least of my problems and that is not the reason I can't work. Have any of you had to go through this? What should I expect at our meeting? Thanks. firstname.lastname@example.org
Jon, October 1, 2002 - Hi everyone, Vickie K wrote me asking if my description of trigeminy was accurate. Well, after researching it and talking to a CHF specialist, I don't know. <lol> It apparently depends on who you ask. Medical dictionaries disagree with cardiologists, who disagree with each other. Here are some of the different interpretations I have now run across - all from cardiologists or medical dictionaries.
One CHF doc says that all the "geminies" describe a grouped beating pattern with the number of beats determining the numerical noun, and the type of single beat that ends the sequence as the adjective. The sequences need to be occurring continuously and repetitively to get a name: 2 normal beats then an atrial premature beat = atrial trigeminy; 2 normal beats then a PVC = Ventricular trigeminigy. He says there is no specific importance to any of the geminies. Most of the time they are just a few cycles in duration, although they occasionally last hours. Abnormal beats occuring together are pairs/couplets, triplets, then "runs." These are more significant. One 3 beat run of VT is more ominous than 3 minutes of ventricular trigeminy in a patient who has a low EF after a heart attack.
Gray's medical dictionary online says that trigeminy is an arrhythmia where the beats are grouped in a repeating pattern of threes, usually one normal beat followed by by two beats where the heart contracts too soon. Another cardiologist agreed with this.
Your call. ;-) Jon.
Sheryl, October 1, 2002 - Hi, Somehow I missed the discussion on "fake air" and am wondering what was said. Would you mind repeating it? Thanks, Sheryl. email@example.com
Katherine, October 1, 2002 - Hi, just wanted to share some good news with all of you. On 9/6/02 I had a biventricular pacing device implanted and today got the results of the echocardiogram I had on 9/25/02. My ejection fraction is up to 45% from 30% at diagnosis 17 months ago and 40% in January, there is no longer any tricuspid valve regurgitation, and the best news of all is there is no evidence of pulmonary hypertension. I still have left atrial enlargement and mild mitral valve regurgitation but all in all, this is really terrific news.
I am having some significant discomfort from the device itself but have lots of inflammation around the pacer pocket which hopefully will go away in 4 to 6 weeks. In 2 to 3 months the cardiologist is hopeful we can begin trying me off amiodarone, although I will always be on Cozaar and Coreg.
Any of you out there who are considering getting a biventricular pacemaker and have non-medical questions, I'd be glad to try and answer your questions. Just e-mail me directly or post it at this site. firstname.lastname@example.org
Jon, October 1, 2002 - Hey, The next time I make a meds change, I'm gonna just have my wife "put me down" like a lame horse! <g> This bites. Jon.
Ben B's October 1 reply to Jon's October 1, 2002 - Hi, I know that bigeminy is one PVC followed by one normal beat in a repeating pattern. I know because I saw it on my EKG in the hospital and I asked the doctor. I also saw couplets, a few triplets, and trigeminy. My personal feeling is that people like me, who have a lot (and by a lot I means 100s to 1000s a day) of PVCs are going to have various patterns. In general I don't think they mean anything. A person who is concerned needs to be tested like I was through holters and EP studies. They can see if serious problems such as V-tach or V-fib exist. I feel sorry for people who can feel their PVCs. I have never felt one. email@example.com
Jon's October 1 reply to Ben B's October 1, 2002 - Hi Ben, That's what your doctor said, but is it what another doctor would say? <g> My point was that different (and competent) sources define it differently. One set of sources say that it is a normal beat followed by a premature beat, while other sources say it is a premature beat followed by a normal beat. It depends on who you ask.
It seems like a non-issue to me since it's the pattern that matters and the pattern is really the same in either case. Then again, what do I know? ;-) Jon.
Scott Brown's October 2 reply to Wayne's October 1, 2002 - Hi Wayne, Echo is a good tool for a cardiologist to get a feeling for what "ballpark" your EF is in. Generally it should be plus or minus 5% as a margin of error. MUGA should be able to get your EF within one or 2%. If your EF is low enough, that one or 2 can make a big difference. Scott B. firstname.lastname@example.org
Jacky's October 2 reply to Jon's October 1, 2002 - Hi, What meds change did you have? Sorry they are causing problems. Every now and again I think I shall go off all meds. I get so fed up with the side effects. email@example.com
Jon's October 2 reply to Jacky's October 2, 2002 - Hi Jacky, I had to go off hydralazine temporarily. I am very ready to get back on it, let me tell you. <g> Jon.
Rick, October 2, 2002 - Hi, I guess I should have made it clear that it is the railroad disability board that wants me to see a psychiatrist, not my own doctors. firstname.lastname@example.org
Carl CG, October 2, 2002 - Hi, I have had idiopathic dilated cardiomyopathy for over 10 years. I've had 2 ICDs since April of 1995. Five weeks ago I received an Insync ICD to replace my Gem II VR ICD. I was in worse condition after receiving the device and pestered the cardiologists along with an EKG from my internist before they saw me one day ahead of my scheduled heart transplant clinic visit. I'm still status 2 and have been for 2 years.
I wasn't scheduled for a device check until December but I persuaded them to do it at the clinic last Monday. The doctor was out, but the Medtronic technologist was there and made adjustments to my sensor and other settings, which have me going better than I was with my Gem II. I still think the sensor is too sensitive to activity. Mine sits pretty hard on my ribs without much padding.
My heart is set to 60 beats per minute (BPM) for pacing with a cardioversion rate of 115 BPM and 162 for defibrillation. Also, the atrial flutter detector is turned on. Before the adjustments, my heart would do 100 BPM just riding in the passenger seat front or back, in our van. Now I'm driving and do think the activity sensor needs a little more tweaking downward. My heart was beating without meds and downward spiral, in the 40s and low 50s and sometimes at rest in the upper 30s.
Does anyone with experience on this relatively new device wanna swap info? Carl G. email@example.com
Carl C G's October 2 reply to Jon's October 1, 2002 - Hi, Believe me I've been dealing with PVCs in great multiples for over 10 years and they have progressively gotten worse. Two hundred mg Cordarone seems to counteract them for me along with 0.75mg of Xanax 4 times a day. I've had 2 ICDs and am 5 weeks into my first Medtronic Insync ICD. PVCs are very uncomfortable since you are not sure where you're headed. I try to keep a mindset that I'm ready to go, but until then I'm gonna keep on going. Defibs are no fun, but they have brought me back for whatever my purpose in life is. Carl G. firstname.lastname@example.org
Jon's October 2 reply to Carl C G's October 2, 2002 - Hi Carl, I can certainly sympathize. My only experience with PVCs lasted several months and was bad enough to land me in the hospital. They left me short of breath, lightheaded and ocassionally dizzy, and just plain feeling awful. I could feel every one. Luckily, I did not have any other arrhythmias requiring an ICD. The more serious arrhythmias are an experience I really would rather not have. <g> Jon.
Mel G, October 2, 2002 - Hi, Since diagnosis of DCM with CHF almost a year ago, I have had lots and lots of PVCs. Like some of you, I could really feel them most of the time. I always knew they were happening when I felt them, very often in the evenings and at night, but they were also there without my knowledge. Sometimes while in the hospital my husband would say, "Hey, look at the PVCs on your monitor" and there they were, without my knowing at all. They were singles or groups of bigeminy and trigeminy. I have asked my cardio doc about them every couple of visits and mentioned that they were still bothering me. He always reassured me that they were relatively infrequent ectopic beats and nothing sinister.
The PVCs were very much reduced after I switched from metoprolol tartrate to Coreg, which felt much better. Then I had a serious run of V-tach during the night, which I was extremely fortunate to have survived. My heart self-corrected and I recovered conciousness and continued from there. When my cardio doc found out, I was flown to another city and urgently implanted with an ICD.
I have a new model dual chamber pacer and defibrillator, but without the biventricular cardiac resynchronization system. My QRS interval is never much wider than 100ms, and unless the two sides of the heart are having much more trouble communicating than that (indicated by a QRS wider than 120ms, I think) both my cardio doc and electrophysiologist said that such a pacer wouldn't benefit me.
I have the pacing sensor turned on but the pacing shocks turned off, with just the defibrillation shocks turned on for the moment. As I understand it, that means that the docs will get a much more comprehensive picture of why my heart might go into V-tach if it happens again. The dual chamber also means that they can easily turn the pacing on in the future if that is indicated. I'm feeling very fortunate that medical technology and the hard working physicians are able to do so much for me. :-) email@example.com
Jon, October 2, 2002 - Howdy-doo, I feel a lot better tonight. I have no idea what I was doing the past few days and that's why I sent no further mailings and did no page updates. <g> I am sending a mailing out in a few minutes and have another (on CoQ10) going out at the end of the week. If you want to receive these articles by e-mail, sign up here. Jon.
Sherishe, October 3, 2002 - Hi all, I just want to thank you for the outpouring of support and information that I received after my first post. I am feeling much better mentally and spiritually. I am going to get a second opinion and find a doc that I can work with comfortably. I did let my current doc know that I didn't appreciate how lightly he is taking all this. Now he has his nurse call me with my test results promptly. He also spent 20 minutes on the phone with me last Friday answering my questions. :-)
I was wondering if any of you know about having nonemergency surgery. I want to have a tubal ligation and my cardio doc says that it's okay. However my husband is a little nervous about me going through any unnecessary procedures. He has voluntered to have a vasectomy but I feel bad about making that decision for him. I feel that if anything were to happen to me, he may want more children in the future. He says the 3 we have are all he wants but you never know. I know this is probably more info than you want to know but I know that I can get some honest opinions here. Sherishe S. Smarrfive@wmconnect.com
Dorothy Powell, October 3, 2002 - Hi Jon, Thank you so much for the effort you have put into this web site. I have learned so much and have been so uplifted by being able to share my experiences with other CHFers. I live in a small town in West Texas and feel you have brought the world to my home. I just wanted you to know you really are appreciated! Dorothy. DPowell806@aol.com
Ray Q, October 4, 2002 - Hi, I would like to share a website with everyone. It shares the life of my nephew, who has undergone 3 open heart operations since he was born in 1996. He is set to undergo a transplant soon. Please visit his site at www.heislight.com. Sincerely, Ray Quenga. firstname.lastname@example.org
Pat L, October 4, 2002 - Hi Jon and everyone, The doctors can't agree whether I have diabetes or not but are treating me as if I do. One doctor said it is insulin resistance, another said I definitely have diabetic neuropathy in both feet, therefore it's diabetes. One thing that has resulted is that since I have eliminated sugar products such as tootsie pops, jelly beans, and other obvious sugar-laden products from my daily diet, I have lost 28 pounds since June and my heart rate has dropped into the 62 to 64 range after being in the 76 to 80 range even on Coreg. This is very beneficial and apparently has also reduced episodes of PVCs to one or two a day. I had realized quite awhile ago that the large amounts of sugary candy I ate and craved constantly usually would be followed by runs of PVCs. Pat L. email@example.com
Scott Brown's October 4 reply to Sherishe's October 3, 2002 - Hi Sherishe, If your cardio doc says it is okay to have the tubal, it sounds alright. However, is it worth taking the chance? The little "snip" is mostly uncomfortable and can be done in the doctor's office in most cases. I think they can even be undone. It might not be worth the additional complication of heart problems. I lean toward your husband getting the snip. You have to stay healthy for your 3 kids. Scott B. firstname.lastname@example.org
Jon, October 4, 2002 - Hi everyone, Thanks for the e-mails. :-) I am feeling better every other day now, it seems, so I am coming along slowly but surely. Jon.
Tracey C's October 4 reply to Sherishe's October 4, 2002 - Hi Sherise, After I was diagnosed and the doctors told us it would be a risk to get pregnant, my husband insisted on getting a vasectomy. He was uncomfortable for about a day, but the peace of mind was worth it. Take care, Tracey. email@example.com
Tracey C, October 4, 2002 - Hi everyone, Just a bit of good news. After 2 months in underwriting reviewing my medical records I've finally been approved for a life insurance policy. I guess they think I'll be around for awhile. I just want to make sure my husband has some security in the event something happens. Have a great weekend. Tracey. firstname.lastname@example.org
Kathy, October 5, 2002 - Okay, I am convinced. I like my cardiologist and he lists as his interest and special considerations women's health and women's heart disease, but he isn't a CHF specialist. So does anyone have a CHF specialist in western New York? email@example.com
Amelia, October 5, 2002 - Hi Jon, I haven't read the posts in quite awhile. I've been in the hospital off and on. I am so sorry you have been feeling rotten and I sure hope you feel better; you are such an inspiration to all of us and the devotion you have put into this site goes without saying.
I ended in the ER with chest pain and dizziness. The kids had to pick me up instead of me driving. I was admitted to a telemetry unit and was back in heart failure. My EF has dropped to 35% from 45% in April.
I was to have an EPS that they tried to do earlier but the 2 EP docs were not able to get together to do it earlier. I had it on the 27th and was in the cath lab for 6 hours, then transcare for 4 hours. They were able to ablate one bad area but could not do the other (a-fib). I was pretty heavily sedated but felt chest pain when they caused the arrhythmia and again when they did the ablation, but both times got more meds so the pain was short-lived. I stayed in hospital for 3 days.
I saw the doctor this past Tuesday and am not doing well. I had another echo because he thought I had a leak in my heart. In the hospital my BP was 80ish over 50ish and they held back my ACE inhibitor. In the doctor's office my heart was racing. I am more tired then before the procedure and my chest feels tight, I can't seem to get enough air in. My CHF doctor wants to do a heart cath because my heart is enlarged and blood pressure unstable. He says he wants to find out why my heart has gotten so much weaker in such a short time.
Anyone who has had this feeling after EPS or who has any ideas, I would appreciate hearing from you. I am on 20mg Vasotec, 20mg Lasix, 25mg Toprol-XL, and Coumadin, which is at a very low dose since I had to stop it because of the EPS. My doc says it will take awhile to get the dose up again. My INR is 1.7 on 5mg Coumadin daily. They want it to be no less then 2.5. Thanks and the best to all. firstname.lastname@example.org
Jon's October 5 reply to Sheryl's October 1, 2002 - Hi Sheryl, See Jon's 9-11 reply to Janet TB's 9-11 (let it load). Amelia, thanks for the kind words. I am feeling up and down now instead of just down all the time and it's a relief. Sooner or later it will be mostly up - I just have to be patient and not fall off that old diet-exercise-rest-meds-positive-attitude wagon. ;-) Jon.
Jon, October 5, 2002 - Hi everyone, I'll be sending a mailing out about CoQ10 tomorrow. If you want to receive Heart Info mailings, you can sign up at www.chfpatients.com/lists.htm. Jon.
Amelia's October 5 reply to Jon's October 5, 2002 - Hi Jon, I know the feeling of up and down. After many years battling cardiomyopathy and now heart failure, 90% of the time I had been able to do with some limitations what I wanted, from boating, dancing, traveling and shopping until just 4 years ago. However, I have never felt as "blue" as I do now. I knew the ablation wasn't going to make me feel much better but by the same token, I didn't know it would make me feel worse.
I know there are many, many of you who are so much worse and my heart goes out to all that are suffering. My family calls me Florence Nightingale, always taking care of others, but now I am having a hard time dealing with "my" problem. Gee, sorry, I didn't realize my whining. Anyway, thanks for listening and please do take care and feel better real soon. Best to all, Amelia. email@example.com
Jon's October 5 reply to Amelia's October 5, 2002 - Hi Amelia, It's not whining! Those who never vent and try to be always strong don't bend when the pressure increases, they break. It's wise to feel sorry for oneself now and then, it's just a matter of not letting it be a habit, that's all. ;-) Even I felt the need to complain about feeling bad this week, so don't worry about it a bit. Jon
Ruthie A, October 7, 2002 - Hi everyone, This is a word of warning to anyone who has numbness and tingling in their feet. Be careful and check your feet daily! There is a condition known as "Charcot foot" that is found in people with neuropathy (the numbness and tingling stuff). It begins with an small injury to your foot that you may not feel but which can escalate to bone and tissue degeneration and misalignment. Infection may or may not be present, but the condition is still very serious and can be crippling.
So when you check your feet for cuts or bruises or other injuries, also look for increased temperature and for edema, which is sometimes hard to detect with us CHFers who retain fluid. These are signs you may have either an infection or "super circulation" of blood. This abnormal blood circulation can help cause bone and surrounding tissue deterioration, allowing fractures and bone fragmentation. The extra fluids aid in dissolving the fragments, leaving the foot bones fragile, brittle, and easily misaligned. Charcot foot is very painful at times, and without symptomatic at others, so don't think that if you don't have pain you don't have a problem even if your foot is swollen or hot. Check with your doctor immediately and ask for him to consider Charcot foot.
The treatment is difficult and the life style changes are pretty dramatic. Sounds like CHF, doesn't it? However, constant vigilance and regular foot care will help you to avoid serious complications. How do I know about all this? I was just diagnosed with Charcot foot after a minor accident and residual foot pain. Just food for thought, Ruthie A. firstname.lastname@example.org
Joe S' October 7 reply to Amelia's October 5, 2002 - Hi Amelia, I don't know your entire situation but I have lived a restricted life style for 63 years now. I am finally doing things I haven't been able to do for decades, like walk uphill, thanks to having my aortic valve replaced 7 months ago today. My solution to not being able to do what others do was to find something else to take their place. This may sound stupid but I became an authority on numerous subjects, began teaching at different churches, etc.
I keep thinking I am well, but I caught a minor cold the other day and started taking aspirin 4 times a day. The cold got better but while brushing my teeth yesterday blood started dripping from my left hand and there was no cut; and the docs wanted me to take a blood thinner.
The biggest problem I see with doctors is that they treat us generically. Everyone gets the same meds and the same diagnosis and we don't all have the same thing. I have finally convinced my docs I don't need a blood thinner or cholesterol-lowering drug. Beta-blockers tear me up. Watch what they give you, you may not need it. I hope this helps a little. Joe S. email@example.com
Tom S, October 7, 2002 - Hi, For the folks that are talking about vasectomies I wonder what you are doing . I've got to admit I didn't do a very close read on those posts so I really don't know what it is all about. Breathing and just being able to get up to go to the bathroom seems like a major accomplishment to me these days, so I don't think my wife is in any danger of getting pregnant. If she did, I would like to congratulate the man that did it. I really like kids. <g> Lucky for my wife and myself that our libidos gave out about the same time as my heart.
Talk about feeling bad! I sit on the edge of the bed for 10 or even 15 minutes before making a move because something is hurting. I never knew the side effects of CHF could be so painful, but I guess when blood doesn't get to everything like it should, the pain is telling you that part of your body isn't happy.
As for other nice side effects, how about the constant feeling of low grade nausea, or as Jon pointed out, the "fake air" syndrome? To that I'll add the feeling of asphyxiation when I lay down at night cause I can't quite get my neck in the right position to breath properly. How about lugging around an extra 150 pounds that came out of nowhere since the onset of CHF? Sore feet, aching legs, low grade headaches, constant tinnitus (probably from the drugs), desert-dry mouth, constant fatigue and probably others I'm too sore to remember.
That's what life has been like for the past 6 years for me since the onset of my cHF and if you think I am complaining, you are wrong. I'm just sharing what you might be experiencing and from where I sit it seems pretty natural to me. The fact I am alive at all to be with my wife and children for one more minute, one more hour, one more day, is worth all the pain, aggravation and at times anxiety. firstname.lastname@example.org
Jacky, October 7, 2002 - Hi Folks, My cardiologist told me last week that my insomnia has nothing to do with my cardiomyopathy! Comments please! Jackymwb@aol.com
Jon's October 7 reply to Jacky's October 7, 2002 - Hi Jacky, For some people that is true and for others it is false. However, since all cardiologists say this and since they rarely know squat about insomnia (most doctors don't), I simply don't believe them on this issue anymore. My CHF doc says the same thing to me but I know for a fact that he is wrong. It's one of 2 issues we strongly disagree about, and since it's my body and my personal history, I figure I know more in some ways about it then he does. Jon.
Hal, October 7, 2002 - Hi Everyone, I was diagnosed CHF in January of 2001. My EF was 15% in March of this year. I'm taking Coreg, Lisinopril, Lasix and digoxin. I lost 50 lbs immediately after beginning Lasix. I was 215 pounds. In the last 18 months I have risen to 230 lbs. My ideal weight is 180 although I have to work very hard to maintain that level with lots of activity.
Because I'm on welfare the doctor refuses to give me another echo. I guess what I'm getting at very slowly is, how much exercise is too much? It has been a very hot summer here again, with a lot of 90° and 100° days. This weather just wipes me out. I sit too much. Every time I look in the mirror I see the 50 lbs that is going to lay me low. I eat right with no salt, sugar, fatty or fried foods, etc. Some days I feel like I weigh a ton and a half. How do all you heavy folks out there deal with this little problem? You would love to be your ideal weight but how with CHF? email@example.com
Tom S' October 7 reply to Jon's October 7, 2002 - Hi, I have fits of insomnia that seem to attack me in the middle of the night. I almost dread getting up to go to the bathroom because I know if I do, it will get the blood flowing and I will lie awake for 2 or even 3 hours even though I'm dead tired. So I have a little hospital utensil I call "Peter Pan" and it takes care of the having to make a trip to the potty to void. Thank the heavens the number two thing never hits in the middle of the night. While it may sound gross, this little convenience allows me to get done with my business real quick before I am totally awake, and I find it much easier to roll over and go back to sleep. firstname.lastname@example.org
Derald's October 7 reply to Rick's October 1, 2002 - Hi Rick, I've had CHF with an EF starting at 30%, up to 40%, then 55%, and now back to about 45%. Coreg helped me a great deal but something was still wrong so I went to see a psychiatrist (remember they are MDs and will at least have a general idea about what you are going through). My guess is he will want to help you. Depression can simulate and aggravate your symptoms. I have to admit when I take this Xanax pill it usually (not always) takes away any angina or SOB. I hear it's addictive but it doesn't make you high or low or anything. I don't even notice anything after I take it but then if I think about it a half hour later, hey, yeah I'm not as stressed or ready to run out the door. email@example.com
Derald's October 7 reply to Sherishe's October 3, 2002 - Hi Sherishe, My wife died 15 years ago when I was 30. I had a one year old and a 5 year old. After 5 miserable years of grieving I am now happily married again with a little 9 year old boy. Now, I'm tied. <g> I'd say your husband's age has a lot to do with it. Get a second opinion about your chances with surgery and then weigh the pros and cons. firstname.lastname@example.org
Derald, October 7, 2002 - Hey guys, I'm on Lasix but it doesn't seem to make me go to the bathroom anymore than I would usually. I think I'm picking up weight in the abdomen. I was losing weight (down to 199 pounds and working to 185) and after starting Coreg have blossomed to 215, 220, 225 and counting - like in the last 6 weeks. Does Lasix not work for some people? I've never weighed more that 200 in my life until CHF. I think my docs just think I'm putting on fat and maybe I am since I'm not as active as I used to be and I do love milk and cheese. email@example.com
Janet T, October 7, 2002 - Hi All, I've been coming in and out of this site for a few years now, I'm happy to say. I had to respond to Jacky's post about insomnia and cardiomyopathy. When I was diagnosed with a 10% EF in 1997, I was having trouble sleeping. My doc immediately said, "I think that you're afraid to fall asleep for fear you won't wake up again!" He put me on some sleep meds and I still take them to this day. I expressed my concern about getting addicted and he said, "At this point, what difference does it make?" Can't argue with that one. Glad you're still hanging around Jon, you've helped so many people, including myself and my family. Thanks again, Janet T. firstname.lastname@example.org
Scott Brown's October 8 reply to Hal's October 7, 2002 - Hi Hal, You are absolutely right about the weight being a big problem for some CHF people. It just makes your heart have to pump that much harder. I'm 250 lbs and my ideal weight is likely around 170. I try to get exercise, but the heat is the same for me. You can either exercise the weight off or you must eat smaller portions. There are no magic answers here.
I love to eat. It's just another negative that will bring you down if you let it. So, I find creative ways to exercise. We have local programs set up for a nominal fee where you can play badminton 3 times a week or recreational volleyball, floor hockey, all kinds of things that are indoors and available year round. Usually, if you have a problem paying, the programs will make exceptions. Don't be afraid to ask! Scott B. email@example.com
Ruthie A's October 8 reply to Jacky's October 7, 2002 - Hi Jacky, How does your doctor know? Is he there every night watching you toss back and forth in bed? Of all the problems with doctors, I think this one gripes me the most. There are so many of us CHFers that struggle with insomnia, one would think the docs would figure out the correlation.
I sure wish I was as fortunate as Tom S, who can go to sleep or roll over and go back to sleep. My problem is that I can't get to sleep in the first place. I have gone 38 hours without sleep before falling over (literally) from exhaustion. My insomnia can get so bad that my sleep medication sometimes doesn't even work! I never had a problem sleeping before I got CHF, but after 5 years of this is it any wonder that I have bags under my eyes and I'm tired all the time? Ruthie A. firstname.lastname@example.org
Sheryl C's October 8 reply to Hal's October 7, 2002 - Hi Hal, You didn't mention how many carbohydrates a day you eat. Carbs are the big thing to cut back on if you need to lose weight. Find a list with carbs for all foods and add up how much you eat. You will be surprised. Carbs are burned up by exercise and if your body isn't using them for that, it turns to fat. Of course, check with your doctor before starting a diet. Good luck, Sheryl. email@example.com
Tom S' October 8 reply to Derald's October 7, 2002 - Hi, For the better part of 30 years I never tipped the scales at more than 235 but generally hovered in the 210 to 215 pound range. I was like a bear and would gain weight in the fall and lose it starting in the spring despite the fact I did very little in the way of activity from season to season because I lived in parts of the country where we only have two basic seasons. That all changed following discharge from the hospital after my first and only big CHF attack.
My weight started spiraling upward and at the time I was not taking Coreg so that could be ruled out as a contributory cause. I was taking Coumadin at the time (10 mg daily) plus 320 mg of Lasix, Lanoxin, and massive doses of potassium. My weight gain was an average of one pound a week and the doctors did not seemed alarmed at it. Even when I topped 300 they didn't seem too concerned other than to say, "Go on a diet." I told them I wasn't doing anything differently than I had before the weight spiral and that still didn't seem to impress them. I went off Coumadin for about a year and strangely enough the upward spiral reversed itself for the first time in 5 years and I actually lost 35 pounds that year. Unfortunately, an echocardiagram showed that my heart has prolapsed and that a clot had formed in the little prolapsed pocket so I was high risk for a stroke and I was put back on Coumadin at 5 mg and 7.5 mg every other day.
My weight has once again spiraled upwards and I am currently 339 lbs with no sign of reversal. Despite what I thought was a correlation between the Coumadin and weight gain, the doctors say there is no clinical eveidence that could happen. By the way, I also retain fluid in the abdomen rather than my legs and it took a long time to convince my doctors that could happen. I think they are starting to accept it.
I also wonder if the fact I was an athlete in my younger years with very strong legs has anything to do with the fact they don't hold fluids? The muscle tone is still pretty good in the old gams and even my 12 year old daughter says I have "beautiful legs." Of course she generally asks for money or some favor right after she does that but a compliment is a compliment, particularly for someone who looks like Jaba the Hut. firstname.lastname@example.org
Tom S' October 8 reply to Ruthie A's October 8, 2002 - Hi, Are you catnapping during the day? I know I have to be careful not to give in to fatigue during the daytime or I lay awake for hours if I don't. I have developed something of a self hypnosis method for going to sleep, but with CHF it seems to have gotten much more difficult to do. By the way, I realized after I wrote it, but relieving oneself in bed would hardly be an option for the ladies in the crowd, or at least would be a difficult option to exercise. Ooooops, sorry. email@example.com
Jon's October 8 reply to Ruthie A's October 8, 2002 - Hi everyone, The pacemakers page and the BNP Test page have been updated.
Regarding insomnia, I'm with you, Ruthie. I exercise every day, never (never!) nap, eat right, and take my meds at the same time every day after experimenting to see if changes helped. I simply cannot get to sleep to start with. If I do, I sleep well almost every time.
Before CHF, I went to bed before 10:00 PM every night and got up before 5:00 AM every day to work out with weights before getting ready for work. I cannot remember a single instance of insomnia my whole life before starting meds after my CHF diagnosis. My wife does not remember any instances either. Yet no doctor believes it is related to my CHF or CHF meds.
I have tried all the common "cures" including just forcing an earlier wake-up time regardless of when I got to sleep. That caused me to take a week off the site once and made me so sick and weak I literally had to give it up. I have tried milk, Tylenol PM, more daily exercise, changing my diet and the times at which I eat, Ambien, Restoril, and melatonin (big mistake - don't try it!). Zilch.
Like Ruthie, I have spent 2 days and 2 mights in desperate fatigue at times due to insomnia and I believe it is more disabling to me than my heart failure now, as does my wife. My doctors couldn't care less and act like it's nothing. Needless to say, I am not impressed by their lack of knowledge or perception on such a critical issue as sleep deprivation.
Studies show that in midddle aged men, sleep deprivation on a regular basis is literally devastating to health. Still, doctors blow it off as nothing. End of rant. ;-) Jon.
Jacky's October 8 reply to Jon's October 8, 2002 - Hi, I find that Ambien does work but it is very addictive, so that knowledge creates stress which creates insomnia. Talk about a no-win situation. My PCP checked some other meds that she prescribes for insomnia but none could be taken by heart patients! By the way, she has referred me to a cardiologist who specialises in CHF. Maybe he will come up with a brilliant idea regarding insomnia. Jackymwwb@aol.com
Jon's October 8 reply to Jacky's October 8, 2002 - Hi Jacky, I have a strange body. <g> Ambien works for two doses for me and then I become almost completely tolerant to it and it does nothing at all for me - even at high dose. I am not at all worried about becoming addicted. If it helps me get to sleep, I am all for it at this point. Jon.
Amelia's October 8 reply to Joe S' October 7, 2002 - Hi Joe and Jon, Thanks a lot for your understanding and encouragement. My doctor also made me feel better when I told him I was sorry to be complaining and he said, "Why, you are supposed to complain to me. I know why and what is going on, your family and friends may not understand." Anyway, I still can't seem to pull back up since going back into left heart failure again. I am slowly getting back (my blood pressure dropped very low while in the hospital) on 20mg Vasotec, 25mg Toprol-XL, 40mg Lasix, and Coumadin (warfarin).
I asked him why I was taking Lasix every day when I didn't feel like I was retaining fluid. He said I retain fluid around the heart and he wants to keep it off to keep my heart from getting weaker. A heart cath is in the near future to be sure my arteries are clear and I hope to get a better picture why my heart is getting weaker in a short time. I found this article in my church bulletin, I have it posted and read it often, which helps a lot: With feet to take me where I'd go, With eyes to see the sunset's glow, With ears to hear what I should know, I'm blessed indeed, The world is mine, Oh God forgive me when I whine. Amelia. firstname.lastname@example.org
George, October 9, 2002 - Wow! My heart and prayers go out to several of you who are having such continuous problems with weight, quality of life, etc, as mentioned in posts over the last few days. Albeit having been diagnosed with CHF in May of 2002, I do not have the misfortune of having had years of experience with CHF as some who have shared their comments, but I've been in the same boat nonetheless.
I was convinced for the first month that I wasn't going to make it. All the indications were there:: I couldn't lie flat, was SOB, no exertion allowed, scared to death, etc. I did 2 simple but uncompromising things that changed my symptoms totally. I found a CHF specialist that was genuinely interested in listening to me, and I refused to do anything this CHF expert told me to do unless he could make sense of it in terms of my life rather than some treatment protocol he happened to be following.
The results were immediate. Within 3 days the new mix of meds eliminated (yep, totally gone and have stayed gone) every single symptom I was experiencing. No matter how long you've had this devastating disease, please do not underestimate the power of getting the right mix and dosages of your meds on target for your body. Don't follow any doc's treatment protocol if it isn't working for you.
I knew nothing about retaining liquids being harmful but in the first week of taking Lasix in the right dose combined with a very low sodium intake, I dropped 17 lbs in 10 days (to 151) and have stayed within one pound of that for 4 months running. I am so "dry" now that the doc okayed me to stay off the diuretic 2 months ago.
On the issue of weight, I think everyone has struggled with the fat thing from time to time. Hopefully I won't alienate any fellow CHFers with my direct comments on the topic. While some of the issue very well may be finding the right diuretic for you individually, the bulk of the problem is your attitude toward weight. As long as you see the problem as the need for a diet, you'll make little progress. In fact, let me give you credit for already knowing the answer to the weight issue: you have to eat less and exercise more.
Given my eating habits for 45 years, I fully sympathize with how tough it is to give up the dishes we yearn for but your first choice has to be to stay alive with an acceptable quality of life. Your preferences for eating must take a second chair. The key is actually not just eating less per se, but eating more of the right things. This is a life style decision, not a diet. I learned how and so can you. I get plenty to eat. I haven't been hungry one time since starting my new life style.
When I started exercising I could not walk the 8 steps from my Jeep to my front door without being exhausted. I had been totally sedentary for 5 years. I made a choice to start a workout program, knowing it would have to be a little at a time. I joined the YMCA and I make myself go and do some exercise 5 days a week. If I don't feel too spiffy, I go anyway, then decide once I get there how much I can and will do.
I have PVD (Periphereal Vascular Disease - blocked arteries in my legs) so badly I could not walk more than a half block at one mile per hour before cramping in my right leg made me stop totally, so I had to take a slow approach to a fitness program. Walking has been very slow in progressing but I put my tired ole bum on my treadmill everyday and walk until I cramp up. Then I stop, sit until the pain goes away, and finish my 30 minutes for the day. By the way, over the past 4 months my maximum time before excruciating pain stops me has gone from 2 minutes to 20 minutes. Over time, the experts say, the walking will force the blood to find another route and I will be walking pain free.
I'm neither chastising nor making judgements on anyone. This is a tough, debilitating disease. However, I am encouraging each of you to do those things you can do, one baby step at a time. The results of a lot of hard work have been worth it for me. I've had two bad days in 4 months since deciding to take charge of my life again. With God's help I'll be able to continue my efforts.
Sorry for the length of this, but I thought it may be helpful to others here. If anyone would like to discuss this, just drop me an e-mail. I'm not a doctor and I don't listen to 90% of their standard line. Rest easy, pray hard and live better. email@example.com
Ruthie A's October 9 reply to Tom S' October 8, 2002 - Hi Tom, No, I do not cat-nap or do anything else that could possibly keep me awake. Jon listed all the things that I have tried, so I won't rehearse them again. I do take Restoril instead of Ambien. That's about the only thing Jon and I differ on with insomnia. On the really bad nights, even a high dose of Restoril is as though I ate a couple of Tic-Tacs! I have given up trying to convince my doctors that CHF and insomnia are related; they don't even listen. So I shut up, take my sleeping med every night and pray I can get to sleep. Even with medication, the longest I have slept at one time is about 5 hours. Those of you who can sleep are very blessed indeed. Ruthie A. firstname.lastname@example.org
Russell, October 9, 2002 - Hi, I have found that with many situations the anxiety associated with it can be more dangerous than the actual problem. It might help if instead of sleep meds one asked for some anti-anxiety meds take at night. It might help and they the class may be safe for us to use long-term. email@example.com
Jon's October 9 reply to Russell's October 9, 2002 - Hi Russell, Thanks for mentioning this. I had forgotten all about trying an anti-depressant (Elavil) for my insomnia at my PCP's suggestion. It made me worse in almost every respect, but since anxiety and depression weren't my problems, that figures. I told him but he didn't listen. <g> If anxiety or depression is someone's problem, this may be one way to go for help. Jon.
Dorothy Powell, October 9, 2002 - Hi, I was diagnosed with fibromyalgia long before CHF. I take 60mg Elavil (amitriptyline) after beginning at 10mg and slowly working up. I also take heart meds (Coreg, Digitek, Zestril, furosemide). The Elavil makes me sleep whether or not I choose to do so. It seems logical to me that you all might talk to your doctors about an Elavil prescription. Good luck! Dorothy. DPowell806@aol.com
Janet T, October 9, 2002 - Hi All, I tried Ambien for sleep too but it wasn't for me. I cried the whole next day so I refused to take it anymore. I thought I was having a nervous breakdown or something. It's just a good lesson how we all react differently to medications. I think that's important to remember. I am a firm believer in exercise, eating properly, and taking meds at the same time every day. I would have never guessed I would have trouble sleeping, but it happens. I wish more docs were more understanding about it so people wouldn't have to suffer. I always harp back on my same advice, "Always talk over your circumstances with your doctor." Be firm about what you want! Janet. firstname.lastname@example.org
Barbara M, October 9, 2002 - Hi, I have had DCM and CHF for 2 years, also accompanied by insomnia. I was prescribed Zopiclone at 7.5mg, having previously refused all sleeping medications because of bad side effects. I found it worked extremely well. It puts me to sleep very quickly and works for about 6 hours. I took it nightly for about 4 months and now only take it when needed. Perhaps you may want to ask your doctor about it. Regards to all, Barbara. email@example.com
Michael, October 10, 2002 - Hi, I was diagnosed with CHF 5 months ago. I was and am still free of any symptoms. I am on Lasix, Dilatrend, Lanoxin and Zestril. I also take folic acit and multivitamins. I have annual check-ups because I have a history of lymphoma (canver) and am now 7 years in total remission after an autologus bone morrow transplant. My last check-up showed a mild benign prostatic hyperlasia. As I am 46 years old, it looks strange to me. I wonder if the medicines I take can cause this mild prostate enlargment. Does anyone has similar experience? Michael. firstname.lastname@example.org
Judi, October 10, 2002 - Hi all, I am very happy and lucky that I found this site. I injured my back at work (I'm a nurse) in November of 2000 and when I was going for surgery in January of 2002, I found out I had a heart problem. After many tests, the heart cath showed DCM with an EF of 46%. My cardiologist put me on ramipril and I haven't seen him since.
Between my back problems and my heart problems, which I did not know were heart problems until I found this site, I don't know which one is worse. It is 3:30 AM right now and I am up because once again, I can't sleep. I have been feeling bad for days now, my rings are tight, my heart is beating too hard, and I am tired and nauseous. I didn't realize these were heart problems until I read your site.
I know I should get to a doctor but I have no medical insurance. I appreciate reading all your posts and I guess I just wanted to say hi and to thank you Jon, for all the info. Well, I'm gonna go try to get some sleep. Night all, Judi. Halo2000@attbi.com
Jon's October 10 reply to Judi's October 10, 2002 - Hi Judi, If you can't get to a doctor at all, at least go on a very low sodium diet immediately! If possible, read up on beta-blockers and diuretics and then make one doctor's visit to get a prescription for those drugs. Get a generic of both, of course, meaning Toprol-XL for the beta-blocker. Taking these drugs now will save you a lot of money down the road, trust me. If your heart goes into full-blown CHF, it will get very expensive very fast and doing drug therapy right now may prevent that entirely. Jon.
Carl, October 10, 2002 - Hi, For the end-stage heart disease patient check out www.thoratec.com/ventricular-assist-device/heartmate_lvas.htm. It details a biventricular pump as a bridge to heart recovery or until a new heart comes along. Saint Francis in Tulsa should be an approved site soon, if not already.
As far a PVCs and sleep, my PCP has had me on Xanax (alprazolam) as needed for most of the last 10 years. In March of 2001 I started taking one mg 4 times a day. Then I started 200mg Cordarone last November and was able to back off to 0.75mg Xanax. I tried going lower but my PVCs and insomnia increased.
My PCP explained that Xanax blocks some catecholemines from reaching the heart. These natural body chemicals are overproduced trying to keep a diseased heart doing what it has always done, but is no longer possible, the fight or flight signal.
Xanax works for me. I find a dose lasts about 4 to 5 hours. After getting up to pee at night, I sometimes take another 0.25 to 0.5 mg of Xanax, but mostly rely on a daily nap or two. When there is a lot of excitement like family and holidays or family matters get thick, I take an extra 0.25 mg of Xanax in between regular doses to keep myself calm and the unwanted PVCs away, even with my new biventricular pacer/ICD.
My last EF was 17% taken in March of 2001. I expect a new battery of tests: echo, MUGA, Swan-Ganz cath, in December to establish any positive results from my new pacer. I do feel better with this device versus the 2 previous ICDs I had. I'm on 10 drugs right now and they have some side effects, but the upside is that I'm at home and as active as the old heart and meds will allow. I am even driving locally when I'm up to it. Social Security Disability doesn't pay too well, but my family of five hasn't missed any meals.
I'm age 50, 5'11" at 180 lbs. I used to be around 200. I've learned to push myself away from the table, leave pop alone mostly, and follow a low-sodium, low-fat diet. Overeating pushes the stomach up into my enlarged heart which impinges upon laboring lungs, leaving me uncomfortable and short of breath. I still have comfort foods now and then, but generally avoid all caffeine. Golden Coral, Sonic and Arby's get visited occasionally, sticking to the lean foods menu like grilled fish and chicken. My romance with ice cream has waned dramatically in the past year and a half with my heart disease progression and new meds.
I totally agree with other posts that I experience many side effects from most of the drugs from time to time. Sometimes it is just a matter of state of mind and keeping busy doing what you can on a daily basis. I have yet to find a day ended without an inventory of something good and positive accomplished. Today I may attempt to start on a bench to hang on my fence in a favorite corner of my yard that I frequent for reflection and prayer. It is in amongst trees and near where my family hammock swings. My prayers to all fellow CHFers that you have enough beats to live today and many tomorrows. Regards, Carl G. email@example.com
Jon's October 10 reply to Carl's October 10, 2002 - Hi Carl and everyone, Just a note about the biventricular assist device to avoid confusion. Most CHFers - even in end-stage pump failure - will only require an LVAD. Biventricular devices are a life-saver for severe right and left heart failure but carry higher risk and much greater "discomfort." The "new" thing about them is that the driver (pump itself) is now pushed around on a cart instead of keeping you in a hospital bed all the time.
I am checking into Xanax and catecholamines since I have never heard of this drug affecting heart failure to any great degree although it does affect catecholamine action. Catecholamines are more often called neurohormones these days. In heart failure, the body speeds up your heart rate by overproducing them. It does so to make up for your heart pumping less blood per beat. The more beats per minute, the closer your body gets to pumping a normal amount of blood despite weaker pumping action. In the short-term, this is good. Over the long-term, it wears out your heart muscle. Coreg fights this problem wonderfully. I'll get back to you once I hear from my CHF specialist advisors and finish my own research on Xanax. In the meantime, please don't ask your doctor for Xanax as a heart failure drug. Really. Jon.
Natalie, October 10, 2002 - Hi, I just wanted to thank you again for maintaining this board. I hope to be able to make a donation soon. I have learned so much here. Maybe the best thing I've learned is to be thankful; as long as I can get here, things could be worse. By the way, here on the East Coast, supermarkets carry a sodium-free chicken and beef boullion by Wylers. The product is reasonably priced and at least gives us something convenient to build upon. firstname.lastname@example.org
Jon's October 10 reply to Natalie's October 10, 2002 - Hi Natalie, Thanks for the kind words. No donation is ever necessary. I incorporated to make it possible to receive donations but if anyone needs money that they send to me, I have sort of negated the idea behind the site. ;-) By the way, for everyone, if you do donate money to CHFpatients.com, Inc., it goes to the company - not me. I get no salary so all donations go 100% to site costs. Jon.
Hal's October 10 reply to Scott's October 8, 2002 - Hi Scott, Looking at the numbers weight-wise, we are indeed in very similar boats. This hassle has been an ongoing thing for my life time. I too like to eat. I used to drink a lot of fermented malt beverages also. I've found over the years that I will reach certain plateaus. I will remain there for a period and then start to gain. I work off the balance by lightening meals and increasing activity.
The thing is, it seems as though the older I become (54) the harder the effort to reduce weight. This fat really holds on. These plateaus have increased over the years: 180 lbs in my 20s, 200 lbs in my 30s, to 215 in my 40s. My 50s have been too strange to figure out because of my CHF. I lost over 50 lbs in a month early last year. Suddenly I had a stack of new jeans that I thought I'd never wear again!
As you well know, sometimes we CHFers can feel almost "normal" and then other times you can feel very fatigued and pretty lousy, just part of the fun, I guess. I'm going to start a daily walking regime now that it's starting to cool off and see what happens. Wish me luck. Luck to all of us. email@example.com
Hal's October 10 reply to Sheryl C's October 8, 2002 - Hi Sheryl, I am very aware of the carb thing. My sister and her young daughters used to look like little linebackers before they all went on the Atkin's Diet. My one little niece went from being 4 x 4 and terribly miserable to looking like a model in less then a year. My diet now is all natural: fruit and veggies, beans and nuts and some grains. I eat meat very rarely for various reasons: economic, ecological, and spiritual.
My poor body in the last 5 years has done the following: lost 30 in the summer of 1997 due to an enormous amount of walking. I was looking for work and have no vehicle so it was a lot of walking. I was as close to 200 lbs as I've been in 15 years. I looked and felt great. The job I finally got I worked like a madman for 3 months and for 9 I wasn't so active. Also, I was in Portland, Oregon (Beervana). I gained back those 30 pounds and then just kept getting bigger and bigger and bigger. I'm single so I had no one to sound an alarm of any sort.
My working buddies just chalked it up to the "good life" - good pay and living in a great city with hundreds of eating and drinking establishments. It was my CHF and I didn't even know it. I was 277 when diagnosed and couldn't tie my shoes. The Lasix got me back to the 215 plateau. Now when I eat a lot of carbs it shows on the scale the next day. I try to keep them to a minimum, toasted wheatberry now and then, and I'm a hog for naked shredded wheat for breakfast. Pasta is for special occasions when you feel you can stand to gain 5 more lbs instantly. Thanks for the advice. firstname.lastname@example.org
Jon, October 11, 2002 - Hi everyone, I uploaded a new set of health links - the same links in my own "Favorites" directory that I use every day. You can get them as usual at www.chfpatients.com/urls.htm. Jon.
Cat, October 11, 2002 - Hi, We all have biological clocks or circadian rhythms. It keeps the body alert during daylight hours and helps us relax when night falls. The following article may shed some light on why many cardiac patients have difficulty initiating or maintaining sleep: www.sciencedaily.com/releases/2001/07/010702085142.htm. email@example.com
Jon's note: Also see this article
Scott Brown's October 11 reply to Judi's October 10, 2002 - Hi Judi, I have a low EF of 24 to 25%. For the first several weeks, I could not get to sleep. I was so worried about my new condition, I could feel my heart beating extra hard. I really think it was a lot of worrying causing my insomnia, and less the heart condition. I also believe that some meds like Coreg have a slight diuretic effect as well, enough to get you up for an extra pit-stop at 4:30 AM.
I personally became exhausted and once in that exhausted state, I found it difficult to sleep as well. I hope you can work out your sleep problems. Being tired every day can start to effect you emotionally as well. We all know CHF patients do not need further emotional burdons. Scott B. firstname.lastname@example.org
Fred, October 11, 2002 - Hi, I was diagnosed with CHF 2 years ago. I finally have my meds working for me instead of against me. I still suffer from SOB and angina with light to moderate exertion. I can live with all of those, but I do have a problem that seems to be getting worse and that is my short term memory.
When I first started reading this web site I was made aware that short-term memory loss is common. My question is, does it get worse? I started to write this post and forgot what I was going to write about. I also notice a hard time thinking of words while conversing or writing letters. Sometimes it is embarassing not being able to vocalize what you want to say. I am not complaining, my life is good, but I would like to know if this is common amongst all CHFers and can it get worse? email@example.com
Tom S' October 11 reply to Judi's October 10, 2002 - Hi, I've managed to live most of my life, brought childen into the world, and personally suffered a major illness (CHF) with no insurance or doctor of record. I managed to get first class treatment every time. I learned a long time ago to use what is available and I think there are catastrophic insurance payment plans administered by many states for cases such as yours.
In 1993 my youngest son was born at 26 weeks and was a patient at the local neonatal intensive care and pediatric units for 6 months before he came home. The bill was over $300,000 and because of a clerical error and change in my insurance plan, we did not have coverage. The state stepped in and paid for my son's medical care. In 1996 I was hit with CHF that landed me in the hospital for 10 days and while I was there, I underwent a $12,000 cath for a total bill of over $52,000. I didn't even have a primary care physician and not only did the state pay the entire cost of the hospital stay but assigned me the cardiologists that I still have to this day. According to the physicians, they are bound by the state to keep me as a patient. I know I rail against physicians but this group has never even blinked at the fact I was a basic charity case and always went out of their way to insure I was comfortable and was taken care of with my prescriptions.
These are examples. So that folks out there don't think I am a complete deadbeat I did have insurance for the care of my family, but it was only during unusual lapses of coverage that illness seemed to strike. A recent example of that was my wife, who had a virulent reaction to poison ivy she came in contact with while on a volunteer clean-up landscape crew for one my children's schools. It got so bad she was sent home by her employer of one month. She did not have insurance coverage until the next day. We still went to the emergency room and they took care of her regardless of the insurance lapse and offered to set up a payment schedule to take care of the bill, which I am sure will be astronomical.
I guess the bottom line is that people shy away from much needed medical care using the excuse that they are uninsured or don't have a doctor. For over 3 decades I have found that it doesn't seem to matter, if you really are in need of medical attention and care. firstname.lastname@example.org
Jacky's October 11 reply to Barbara M's October 9, 2002 - Hi, I have not been able to find any info on Zopiclone. Anyone? Thanks. Jackymwb@aol.com
Jon's October 11 reply to Jacky's October 11, 2002 - Hi Jacky, See this page: www.healthyplace.com/medications/zopiclone.htm. Jon.
Hal's October 11 reply to Tom S' October 11, 2002 - Hi, Not to be smart or facetious in any way, shape or form, but what state do you live in? The financial aspects of my condition are my biggest worries by far. Disability pays me $620 per month. My welfare doctor will not give me another echo because of the cost. You ran up all those bills and they went away just like that? I cannot work and I'm stuck basically in the most expensive part of the entire country. My "care" consists of a 10 minute talk with a different doctor every 4 months. In the San Francisco Bay area, $620 was considered "income" about 40 years ago. Where do you live? Best to all. email@example.com
Hal's October 11 reply to Jacky's October 11, 2002 - Hi, Regarding your insomnia, your doctor may or may not be correct on that one. My story is that as my CHF grew worse and I was not aware of my deteriorating physical condition, I became "afraid" to go to sleep. I know that sounds kind of strange but my mind thought my problem was my mind and not my heart.
I'd go days without sleep because I was sure I wouldn't wake up ever again. The night I was diagnosed with CHF I realized in a blinding flash that I wasn't going crazy after all. Now thank goodness, I have regained my old sleeping habits and sleep very soundly and comfortably 7 hours every night. Wishing you well. firstname.lastname@example.org
Myrtle C's October 11 reply to Jacky's October 11, 2002 - Hi, I wish you could find a pharmacologist doctor who specializes in meds. Most PCPs have a fear of any meds that help us sleep. I am fortunate as I have a doctor who is a psycho-pharmacologist at a teaching hospital (a psyciatrist who specializes in meds). I have been on neurontin (an anti-seizure drug also used for anxiety) and Valium. My PCP frowns when he sees I use 10mg Valium every night. My doctor says, "He will just have to frown." He says these meds are something my body needs, and have never caused me any problems. email@example.com
Myrtle C's October 11 reply to Sheryl's October 8, 2002 - Hi, Your suggestion that fewer carbohydrates are the answer for people who have weight problems bothered me because I think that fat, carbs, etc., are all old fads made new again. The problem with most of us who gain weight easily is calories. Not being able to exercise much makes it so much harder. I know you meant to be helpful but it wasn't for me. It has been a life time battle for me and just when I was stabilized, here comes 30 pounds from having CHF. firstname.lastname@example.org
Gail, October 12, 2002 - Hi, I stop by once in awhile to see what everyone is up to. I also find sleep a very difficult thing to achieve. I feel really tired, then go to bed to lie awake or I can't stay awake and snooze all evening and then cannot sleep in bed. I just perservere because by the time I think of a sleeping pill, it's too late to take one and I have to get up.
I had a heart attack a year ago and have had CHF since. I walk on the average 2 hrs 4 days a week, watch my calories and carb intake, and have not lost one ounce in the last year so if anyone comes up with the magic potion I will try anything. My doctor says it is partly the meds and partly the fact that my heart rate cannot rise high enough for an aerobic workout, which is needed to lose weight. Thank you for letting me ramble. I needed to read that more people than me had the same problem. Gail. email@example.com
Sheryl C's October 12 reply to Myrtle C's October 11, 2002 - Hi Myrtle, All I can tell you is my experience with low carbs. I am on that diet because I am a diabetic. My mom came to live with me a year ago and went on my type of diet. She has lost 25 pounds and kept it off. Where are you getting calories? Keeping your portion size small (except for veggies) is important too. My mouth constantly tells me, "Boy, that tastes good, have some more." I listen to my stomach that knows it is really full. Except for a rare small bite of a cookie or pie, I eat no sweets. I never snack except for raw veggies and low fat dip that I make. I'm sure the fact that those high carb snacks will make me feel so bad helps me say no. I had a lady tell me, "You're lucky you're thin." I just answered, "Luck has nothing to do with it."
It really is a matter of just saying no. If you treat any diet like a fad, it will be one. Change how and what you eat for life. That is it. It's hard to do, but you have to decide how much you really want to live. How important are those kids, that spouse or grandkids, anyway? More important than Fritos or a piece of cake, a moment's pleasure in your mouth? Good luck on finding the right regimen for yourself. I still fight a big battle with the salt shaker. Sheryl. firstname.lastname@example.org
Joe S' October 12 reply to Tom S' October 11, 2002 - Hi, I agree with you about medical bills. A friend of mine told me insurance is only for the wealthy. I have had scores of medical bills totalling over $100,000 over the years. The first time the Sisters of St. Francis paid the entire bill and the hospital wrote off the rest. My son just had both knees replaced and the Sisters footed the entire bill. I believe one must talk with the hospital first. When I told them my circumstances, they told me not to worry about it, it would be taken care of. It is a Catholic hospital and I'm not, but it didn't matter.
Also, don't knock California. I've been getting over $1,100 in disability for 5 years and this month it went to $1,600. When I first became disabled, California immediately paid me $825 a month for a year. The feds took over 6 months. Now all my medical expenses are free including dental with medical. Of course, I did pay maximum Social Security for 30 years so that does make a difference.
Check your hospital policy, check your county and state social services. I moved to the least populated county in California, but they are so wealthy they give everyone free services. One more point, I received a vrery large inheritance 2 years ago and they said it makes no difference as long as you don't work outside the home. Joe S. email@example.com
Jon's October 12 reply to Joe S' October 12, 2002 - Hi Joe, I base this reply partly on your own comments that you paid the maximum Social Security tax for 30 years, so you probably had a decent income and now have received a large inheritance. I did review The Archives, reading some of your previous comments on health insurance. I have no idea if you stopped carrying health insurance only after CHF or not, but you speak as if you view health insurance in general as being for other people only.
County and state services are not "free." We - taxpayers - pay for them. If you had or have sufficient income or money to pay for health insurance yet use those "free" services, you increase the cost of everyone's government services - of all kinds - not just health care services.
I agree that churches and church-run services are a wonderful option and they are voluntarily funded. Members of those organizations have chosen to spend their money to provide such services, much to their credit. County and state services are not voluntarily funded, being funded by mandatory taxes that could be spent on other things. That's one reason we should remove unnecessary burdens from them if possible. Carrying health insurance is one way to relieve such burdens on "free" services. This also allows more such services to focus on helping people who simply cannot afford to buy health insurance even if they want to do so.
I don't like the current system any more than you do, believe me! I think it is skewed in many directions and it needs to be changed. However, your "solution" hurts others who try to pay their fair share even though they have all the same costs of living that you have. If you honestly can't afford it, then by all means let the social and religious safety nets catch you. That's why they exist and that's their proper use. However, if you can afford health insurance, buy it and use it.
The "feds" take 6 months for a reason. It's a built-in delay to provide 6 months of payments later to those able to go back to work, so they don't get cut off while looking for work again. I don't agree with that process but at least it's there for a reason.
I have no idea how California's system is run and California's government does not seem to know from one day to the next. However, others posting here have had serious problems getting help there, Joe. So, I'd say, don't carry on about how we don't need health insurance just because you don't want to pay for it. Jon.
Tom S' October 12 reply to Hal's October 11, 2002 - Hi, At this time I live in a southern state between Virginia and South Carolina (they'll never track me down ) but in the 1960s I was living in Illinois, and then New York state. Our most catastrophic illnesses have been in the south and they seem to be the most congenial when it comes to getting the state to apply it's catastrophic coverage to our particular cases.
There are always major considerations when trying to get the state or any public agency to pay medical bills, and financial need certainly is one of them. Also, we qualify for Medicare after being on SSD for 2 years. I have found quite a few doctors in my area who take the Medicare payment and don't ask for additional money from me. Maybe I'm just lucky in that direction but so far I have had 2 rather expensive echos and they both were paid for by Medicare, which I know isn't even close to what they charge for them. Yet the clinic (a nationally recognized heart specialist practice) I go to doesn't even balk at doing what is necessary to keep me standing.
I also qualified for VA benefits, having been a Vietnam Vet so that has gone a long way in reducing my prescription costs and provides me with yet another low cost medical resource. They even offer burial plots within a few dozen miles of my home at a national cemetary, which we are going to take advantage of. It even includes a plot for your spouse or a child.
I am sorry to hear you are having difficulty. I haven't got a clue how you can possibly live on $620 a month. I don't think I could even exist on that paltry amount. firstname.lastname@example.org
Amelia's October 12 reply to Jon's October 12, 2002 - Hi Jon, I agree with your feelings about health care, but for the life of me I don't understand how anyone can get "free" health service when one can well afford insurance. Here in Maryland, your income has to be extremely low before you qualify for state help. I think the last I heard was about 400 or 500 dollars a month. Each county has a certain budget and sometimes it is easy to get. This includes any and all assets one might have, you cannot have savings or other assets but your resident home is excluded.
With Medicare and my supplement, Carefirst Blue Cross and Blue Shield, I can go to any doctor any time I want without a referral, Medicare take their amount from my Social Security check and I pay $144.00 for BCBS each month plus prescriptions. Thank goodness I can afford this but if not, I would cut back on other things to see that I will always have this coverage. Best to all. email@example.com
Patty R's October 12 reply to Jon's October 12, 2002 - Hi, I could not agree more with your response to Joe. I always tell my kids, there is no free ride! Someone is picking up the tab somehow, through taxes, surcharges, etc. firstname.lastname@example.org
Hal, October 14, 2002 - Hi, I just recently came across a site for the Life Extention folks. Not meaning to slight all you ladies out there, this article was pertaining to testosterone boosting or maintainance. As a 54 year old male human with CHF, I found it quite interesting. They list a number of symtoms that I now possess: loss of ability to concentrate, moodiness and emotionality, inner unrest, and general tiredness. All are attributed to low levels of testosterone on that site. How does one really know what is causing what? Jon and others must be aware of this therapy. Anyone? See http://www.lef.org/protocols/prtcl-130.shtml. email@example.com
Tom S' October 14 reply to Patty R's October 12, 2002 - Hi, Not to add any more to the already expanded thread concerning medical insurance, you are right that you have to be nearly a pauper in order to qualify for medical benefits from the state or other agencies or charities. Sometimes it actually pays to be poor. I would have qualified hands down in that category every time we needed assistance. Because of my CHF we lost two late model cars to repossession, a 3,400 square foot house and savings became non-existent. As a matter of fact I didn't even have a checking account for over 6 years.
With 5 children it was not hard to qualify for several state benefits including health insurance for them, which has been terrific. It's a special program for people who do not quite make enough money to buy their own plans at work and Medicaid. It covers everything from eyes (eye exams and glasses) to teeth (preventive dentistry and care of cavities, and even root canals) except for orthodontics, and all ncessary drugs. In fact, it is the same health insurance the state buys for their employees and it is a very good policy.
Two years ago they went begging for people to apply and we were just about first in line. I must add that during my long work career, which started with a paper route when I was 10 years old, I paid in the high five figures in federal taxes (not including SSI or state) so I don't feel like I am living off the backs of anybody. I would disagree wholeheartedly with accepting charity if you have the ability to pay your own way. Ultimately you will pay the price, and it might be in a way you never expected if you try to cheat the system. I'm too Catholic to cheat anybody because if the nuns ever instilled one thing in me, it's how to feel guilty. firstname.lastname@example.org
Joe S' October 14 reply to Jon's October 12, 2002 - Hi Jon, One quick note on my circumstances back then. I lost my job one month before I was diagnosed with CHF. My income in September of 1998 was zero. My wife had to work at 7-11 just to pay some bills. If it hadn't been for California coming through with the disability monies, I would have become a street person. Everyone seems to think I was a leech. Like I said, I paid maximum into these systems from 1956 till 1986, so I paid my dues. When I went after health insurance in the 1990s I was quoted over $500 per month. We've debated this before Jon and I respect your opinion, but remember my situation at the time. Hey, maybe I am a leech. Your friend Joe S. email@example.com
Jon's October 14 reply to Joe S' October 12, 2002 - Hi Joe, I know what you mean about the cost of continuing health insurance after losing a job. I don't even want to say what we pay to keep mine in force. It's ridiculous and very difficult to do. That's one of the reasons I would like to see the system change at its roots. As long as medical care is directly tied to third party payers, we're all sunk when we lose a job or get sick long-term. I wish I had a potential solution, but the only one I can think of would get me drawn and quartered. <g>
One reason so few people are as willing as I am to get involved personally with running sites like mine is because it is so very hard to discuss things in depth online. Putting one's foot in one's own mouth is bound to happen now and then, and few want to take the chance day in and day out over years. Personal situations are always more complex than they sound in a post or e-mail, and it is very time consuming to try and clarify things thoroughly. Besides, it's hard to put everything in a post the first time with the memory problems most of us face. ;-) All we can do is try, though. Jon.
Catherine L, October 14, 2002 - Hi, I'm 55 and was diagnosed with cardiomyopathy 21 days ago. I am still reeling with the shock, fear, and depression. My EF is 30 to 35%. I'm on Altace and Coreg. I had no risk factors, not being overweight and being very active and having great cholesterol levels.
My biggest challenge right now is to live fully each day and not give in to anticipatory grief and fear over how and when I'll die, will it progress, how long do I have to live, etc,...? Shakespeare wrote, "Cowards die many times before their death; the valiant never taste of death but once." I am struggling to get past my cowardice, I don't want it to ruin what's life of my life. Your thoughts or encouragement would be welcome. I want to thank Jon for this site as well as his e-mails to me. It's been a godsend. Catherine. firstname.lastname@example.org
Barbara's October 14 reply to Jon's October 12, 2002 - Hi, I agree that if someone can afford health insurance they should pay for it. I personally have spent my entire life savings just buying health insurance, medicine, etc,..., because I cannot get help. My husband recieves disability and I work, but combined income puts us over the guidelines, which now has us living check to check.
The federal government needs to have a program set up for middle class people. We are the class which is hurt by most of the goverment programs. The 24 month wait for Medicare also hurts. This needs to become effective the same time that people are approved. I get irritated at the people who can afford their own medical care but go ahead and get all the free services, especially when I have to decide each month which bill I need to pay late so I can make sure the health insurance is paid. email@example.com
Myrtle, October 14, 2002 - Hi, I don't trust our government to continue paying all the bills for health care for those who don't have insurance. For us, we have lost free care from the military since Tricare has undergone another change. We have BC/BS, for which we pay handsomely. We also chose to use Medicare, for which we have to send in checks. We aren't receiving Social Security, my husband has retirement from Civil Service. We don't trust that Tricare will be there for us if need it, so we pay extra, quite a bit extra, to be a little more secure. I agree with Jon that when you can afford insurance but don't get it, you are a burden on the rest of us. firstname.lastname@example.org
Hal, October 14, 2002 - Hi, Has anyone had any experience good or bad with the supplement corcumin as a cholesterol lowering agent? email@example.com
Jon's note: To clarify, it's usually spelled curcumin (part of the ginger herb family, I think) and is an active component of turmeric, which is known for anti-inflammatory properties. See Nutrient Stew Be careful using it if you take a blood thinner
Kathy, October 14, 2002 - Hi, Well okay, today I had my first echo since leaving the hospital August 3.The echo tech let slip that a previously closed up VSD had reopened. I had a cath in 1965, which showed it had healed completely and now it's back. So what does this mean to my current CHF, cardiomyopathy, and arrhythmias? firstname.lastname@example.org
Mel G's October 14 reply to Catherine L's October 14, 2002 - Hello Catherine, I'm 45 and was diagnosed with cardiomyopathy 363 days ago. It will be one year in 2 days, but still feels "new." Your post struck such a common note with me. I'm so sorry you're feeling like you are. Oh boy, I can relate to all the feelings of shock, fear, depression, and anger, desperation, confusion, frustration and inadequacy.
It's been said here before, but I will say again that coming to this site is one of the best things you can do for yourself. Come back often and visit lots and lots of pages. It was certainly the start of my learning to live this new type of life.
I've found my husband, in-laws, parents and children to be hugely supportive and often unbelievably helpful and so thoughtful that it brings me to tears. There are times the CHF will be better and maybe times it will be a little worse. :-( As a knowledge and information addict, I was very bothered by not knowing just how bad this is going to get and what is in store for me personally. I was chronically worried by my lack of knowledge regarding how much time I had left, which no one can answer.
I had a cardiologist for 6 months assigned to me in the cardiac ICU after emergency admission, that I absolutely did not make any kind of connection with. I found him like a stone wall, while I was just begging for information and understanding. He was totally non-forthcoming and in fact, completely dismissive of my worries and my questions. Every time I saw him or talked to him I left the conversation more frustrated than I started. I still don't know why he was like that, but thankfully I have moved on.
Although I find my family and friends a huge support and a comfort and a joy (some relationships have taken off into a new dimension), it is the people on this board and my (new) cardiologist who really understand. That understanding is of such importance as you go through so many new things. I've found that it's a very fine balance between being aware of how your body is handling things (don't deny serious symptoms) and being obsessive and overcautious. Co-workers or friends may sympathize but you'll find people here who understand completely when you talk about wanting to be full of energy but finding your limbs feeling like they're made of cast iron - and then finally getting into bed at night, exhausted but unable to sleep for hours upon endless hours. Then there's the anxiety of undergoing new tests and titrating meds with more and more side effects. What about colds and the flu? There are so many questions.
After a year I am still surprised by days when I wake up feeling well. I have learned though, not to take off like a rocket when I'm feeling that way in the morning. <g> I tentatively ramp-up my activities during the day and can sometimes be active all day long - really physically active - continuing to feel great. I found it hard to relax and let time tell how my body was going to react to meds or foods or activities versus rest because I was so worried I didn't have any time left. I wanted to know everything now but all that did was frustrate me.
I have never found any advice on this site that didn't work for me, and you'll find lots of it repeated in different ways: always take your meds, watch your sodium intake, get a good doc, take every day as it comes, base how you are on how you feel - not necessarily on test numbers. It's important to know that you have this condition and they certainly need numbers of EF and cardiac volumes to help assess you in the first place and to keep track of trends over time, but don't let the numbers trick you into feeling one way or another. Easy to say, I guess, but it's taken me a year of yo-yo ups and downs to work out how I feel. ;-)
I don't know whether your doctor has mentioned keeping track of your weight or blood pressure - lots of us do. I have a chart I fill in, and in addition to weight and blood pressure I write a single word to describe how I felt that day. I use lousy, tired, okay, well, good and great on a sort of 1 to 10 scale. I don't pay much attention to how the individual days are going, but my cardiologist is always interested in the 60 or 90 day "picture" he gets. I think all these little things help me feel like there is a daily life for me now and there is a "future" there too.
I liked your quote and wanted to say that as well as trying to courageously face your future, you also need to give yourself permission to be scared. Who wouldn't be? The thought that a sudden death may happen to you and may happen in less than ideal circumstances, but there is nothing positive about dwelling on that. Maybe you just acknowledge it, and get on with life.
I know you're in for many, many days with good health, good energy, good circulation and wonderful, happy surprises. :-) As to the so-so days, well, we all have those. Very best wishes for great days. email@example.com
Joseph P's October 15 reply to Kathy's October 14, 2002 - Hi Kathy, I had a tech tell me what he thought my problem was too. He was all wet and he received a personal call from my cardio doc about his lack of professionalism. firstname.lastname@example.org
Stan Fredette, October 15, 2002 - Hi, I am trying to decide what to do. Like all of us, I have good and bad days or weeks. I work full-time in a job with a variable workload. So far it has been heavy when I am doing well and light when I am not; pretty lucky, if I say so myself.
The problem is that lately I have become more tired often and longer. I know this is natural and is a sign I need to slow down some. The advice of working a 32 hour week sounded good until I found out that my disability is based on my weekly income and will drop my payments a lot if I go to a 32 hour week. I am in the process of trying to volunteer for an assistant teaching job at the trade school where I learned my trade. They seem interested and want to interview me as soon as possible. Being 4 1/2 hours from where I live, that will have to wait for me to visit my parents.
My concern is I have worked so long and so hard I am afraid to stop. My mind wanders, I get tired easily, and I do not get done what I should get done at work, but I still don't want to give up. Has anyone else gone through this? I know everyone is different, but what other people have experienced can only help. email@example.com
Phil's October 15 reply to Fred's October 11, 2002 - Hi, Fred posed a question on memory loss, which while reading I hoped to see a response to instead of an insurance debate. Another site, Jon? I was diagnosed with DCM 7 years ago and developed CHF 2 years ago when my condition worsened. I was placed on a transplant list and am still waiting with a biventricular pacer/ICD until I am eligible for Medicare in April, 2004.
I voluntarily quit working last October because I could no longer focus or concentrate on my responsibilities at work. It seemed the prescribed dose of Coreg was affecting my memory too, and my doctor reluctantly changed me to Toprol-XL. This helped, but as the dosage was raised to meet my needs I again started to forget what I was doing or saying, which affected my profitability with the firm. It was probably the best job of my career, but life is better.
I also am curious about others who are affected in this way since the "doctors" don't seem to find a lot of supporting evidence of this in their research. Being 48 years old, I wonder if their research was on older patients with memories that were failing to begin with. Many of these very beneficial drugs seem to have hidden side affects that only show up in some of us. I am learning to cope and my wife is being patient with my forgetfulness, which sometimes seems to be a guy thing. Pgwal64810@AOL.com
Jon's October 15 reply to Phil's October 15, 2002 - Hi Phil, I'm not sure what the "insurance debate" has to do with Fred's post. The idea of another message board comes up now and then. It won't happen here in the foreseeable future, though. We'll just have to muddle through with this one. ;-) If past threads are any indication, you'll have no trouble getting replies to memory loss/concentration loss issues 'round here.
My own memory stinks even though I stretch it every day with medical research issues and site construction and maintenance. My IQ has dropped at least 30 points in my opinion - seriously. My CHF doctor does not believe it, but as my wife says, "That's because he didn't know you before CHF." Jon.
Jon, October 15, 2002 - Hi everyone, Well, the CHF doctor advisor I asked has not heard of Xanax being used as a direct treatment for CHF. He said it does have an effect on catecholamines but whether Xanax affects the catecholamines that adversely affect the heart and if so to what degree, is poorly studied. My own research showed that Xanax studies for heart function are all fairly old and show little cardiovascular benefit. Jon.
Katherine's October 15 reply to Phil's October 15, 2002 - Hi Phil, The most difficult part of CHF and cardiomyopathy has been my sense that I was no longer thinking or remembering things clearly. I felt as though I had cobwebs building in there daily, and had difficulty keeping track of facts, numbers, ideas, etc. However, since the implantation of a biventricular pacing device on 9/6/02, I have already found that improving. I am finally getting more blood and oxygen to my brain. I had to mention it several times to my cardiologist but he finally "got" how desperate I felt about this and that's when he seriously started exploring implanting a pacemaker as an option. firstname.lastname@example.org
Kathy H's October 15 reply to Joseph P's October 15, 2002 - Hi Joseph, Actually the cardio doc came in after the echo was done and confirmed what the echo tech had told me. He said that he had thought it had come back based on a CAT scan when I was in Club Med. He will phone me with results of the echo after he reads the report. email@example.com
Rick M's October 15, 2002 - Hi, As one of the older members of this distinguished group at 77 years old with CHF since 1996 and taking Coreg since the beginning, only one hospitalization (to implant my pacer), I wish to report that my memory has never been better. I can tell you what I had for dinner last Wednesday, and I can rattle off my Navy serial number from World War II. I talk to my brother, who is 79 years old, up in Maryland several times a week and we can recall events from our childhood and keep each other up to date on the world of computers and digital cameras.
My brother is a "retired" attorney but is still practicing law. I have always subscribed to the "use it or lose it" theory and think that an active mind is its own reward. Now, if only I could do all the walking and standing that I'd like to, but your memory works just as well sitting down so I'll stick with that. 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.