Susan D 8-1 hospice care and to Tom S
Jon's 8-1 reply to Susan D's 8-1 hospice care
Roger G's 8-1 reply to Chris L's 7-30 bundle branch block
Roger G's 8-1 reply to Tom S' 7-30 end-stage heart failure
El R's 8-1 reply to Chris L's 7-30 CRT pacemaker experience
Susan F 8-1 seek genetic cardiomyopathy info & experiences
Cheryl C 8-1 seek CoQ10 information, brand suggestions
Marilyn M's 8-1 reply to Yvette's 7-30 update, coping with heart failure
Marilyn M's 8-1 reply to Chris L's 7-30 implanted device experience
Margaret D's 8-2 reply to Susan F's 8-1 familial cardiomyopathy
Tom S' 8-2 reply to Roger G's 8-1 uncertainty in the meantime is maddening
Judy H's 8-2 reply to Chris L's 7-30 implanted device experience
Teresa M 8-2 is my heart problem really gone?
Marian V 8-2 end-stage heart failure, and oxygen question
Yvette's 8-3 reply to Marilyn M's 8-1 heat, edema, exercise, INR and more
Tony M's 8-3 reply to Marian V's 8-2 coping with serious illness
Roger H 8-3 prayer request, watch out when in the hospital
Susan D's 8-4 reply to Jon's 8-1 hospice care experience
Peter S' 8-4 reply to Cheryl C's 8-1 CoQ10 for heart failure
Lowell P 8-1 test results and concerns, questions
Scott B's 8-4 reply to Tom S' 7-30 end-stage heart failure
Scott B's 8-4 reply to Roger H's 8-3 hospitals and heart failure
Scott B's 8-4 reply to Marian's 8-2 oxygen use
Tom S' 8-5 reply to Marian's 8-2 oxygen use experience
Mary D 8-5 seek disability with improving EF experiences
Mary M 8-5 good news update on Bob
Joy K's 8-5 reply to Marian V's 8-2 oxygen use
Lowell P's 8-5 reply to Jon's 8-4 Avapro, diuretic, kidney function
Jon's 8-5 reply to Lowell P's 8-5 Avapro, diuretic, kidney function
Rita C 8-5 seek experiences with CHF and confusion
Lowell P's 8-7 reply to Jon's 8-5 meds, doctors and this web site
Doreen W 8-7 improved EF, but feel no better
Samuel R 8-7 seek CHF doc in Georgia, EF versus how I feel
Norma L 8-7 ACE inhibitor, swelling, blood pressure - question
Marty C 8-7 improved BNP, how I feel varies
Sue H 8-7 muscle weakness & vision disturbances
Sandy H's 8-7 reply to Peter S' 8-4 CoQ10 purchasing experience
Mary Anne 8-7 any suggestions for avoiding another stroke?
Sandy N 8-7 heart failure med for black CHFers
Roger G's 8-9 reply to Doreen W's 8-7 getting used to meds
Tony M's 8-9 reply to Sue H's 8-7 Lipitor experience
Blair R 8-9 can I stop meds after testing normal?
Yvette's 8-9 reply to Sue H's 8-7 muscle weakness
Jon's 8-9 reply to Sue H's 8-7 muscle weakness
Scott Brown's 8-9 reply to Rita's 8-5 confusion & end-stage CHF experience
Scott Brown 8-9 keeping this web site going
Terry S 8-9 lack of intestine, dehydration, fluids, sodium
Donna V 8-9 device questions, prayer request
Jennifer G 8-10 seek surgery/anesthesia with CHF experiences
Sue H's 8-10 reply to Jon's 8-9 seek advice on amiodarone and ablation
Tonya H 8-10 seek CHF doc in Richmond, Virginia
Donna V 8-10 implanted device experience
Noel B 8-10 seek comments on implanted device replacement
Peter S' 8-11 reply to Jennifer G's 8-10 surgery/anesthesia with CHF experience
Amy W's 8-11 reply to Tonya H's 8-10 Virginia heart failure doctors
Amy W's 8-11 reply to Jennifer G's 8-10 surgery/anesthesia with CHF experience
Donna H's 8-11 reply to Donna V's 8-9 device beeping, biventricular pacer experience
Norma L 8-11 meds change, skin peeling
Roger H's 8-11 reply to Jennifer G's 8-10 surgery/anesthesia with CHF experience
Karen K's 8-12 reply to Jennifer G's 8-10 surgery/anesthesia with CHF experience
Kate's 8-12 reply to Noel B's 8-10 ICD recall experience
Bill H 8-12 does anyone else have little quirks?
Susan D, August 1, 2005 - Hi all, Jon, your post concerning hospice care is really alarming and in my experience the opposite of what we have encountered. We have been enrolled in hospice care for end-stage CHF since January of 2005. I will agree that the majority of hospice care is centered on cancer, the disease that brought forth the hospice movement. With CHF becoming a huge problem with the aging population, hospice centers are working hard to get up to speed on this disease. Never have we been advised to stop any meds, which include Coreg, Diovan, spironolactone, and Lasix. Hospice added 10mg (a very low dose) of morphine for breathing at night, which has been ongoing for 90 days now. We have not been faced with a decision on inotropes but if it helps relieve suffering, we will do it. Very early on hospice nurses asked why we were restricting sodium and fluid when the patient is not consuming enough food to maintain a reasonable weight. We were delighted to stop this whole process and try to open more options for enjoyable food. It has not created a problem because at this point, there just isn't a lot of food or fluid consumed.
Tom S, concerning the horrific descriptions of end stage CHF, I have to tell you this has not been horrific. It has been sad, frustrating, and aggravating. Jon is so correct in advising there are meds and options to be employed to ease a lot of the symptoms. The most devastating one in our case has been the unbeatable fatigue; never ending tiredness and lack of energy to do anything. This brings on anxiety, helped with meds. The complication of confusion doesn't help. There has been no reported pain and I have seen no evidence of pain. We are handling the shortness of breath with morphine. There is off and on insomnia and bathroom issues, all handled with appropriate meds as needed. I encourage everyone to consider hospice when the time is right, but if Jon is laying out the experience some are having with this system, then I urge everyone to become self-educated, aggressive and hands-on with their own care or the care of their loved one. It is simply not necessary to have a bad death and I, for one, will not allow it to happen in my family. email@example.com
Jon's August 1 reply to Susan D's August 1, 2005 - Hi Susan and others who do report good hospice experiences, I'm glad hospice is working properly for you! I don't know why you found my post alarming in any way, though. It's certainly no more alarming than general cardiologists' tendency to ignore treatment guidelines on a regular basis.
It's a natural reaction for people to be defensive when I warn about a service they have found helpful. Successful heart transplant recipients often react this way when I warn about the risks involved with that choice. I have not attacked hospice and I carefully stated as much at the start of my post on the topic.
I made the points I did because I know that many hospice workers do not yet understand heart failure and its therapeutic versus palliative care requirements (cardiologists don't yet all understand how to treat heart failure!). This was a topic at the most recent national hospice conference, actually.
I base my statements on many conversations with hospice care workers themselves, doctors, nurses, medical researchers, health care managers, and of course CHFers and their loved ones. The amount and variety of input I receive on numerous CHF topics including this one is huge and allows me a better overview than most doctors and health care managers ever receive.
As I said, I believe in hospice care for end-stage illness. Please note that I did not imply hospice workers aren't trying to "get up to speed." However, just as in heart failure treatment in general, we have to look out for ourselves and our loved ones - period. Assuming that hospice workers and area hospice programs are all up to speed is like assuming that all cardiologists are up to speed on heart failure treatment - it just isn't so. Be educated, be assertive, and you'll always get better care for yourself and your loved ones. My job here is to provide information that allows people to do so, and to make them aware of what can lie ahead.
To everyone, more posts later - I am so far behind on everything on the site and at home that it is a crap shoot as to what gets done and when for now. I just have no energy whatsoever. Jon.
Roger G's August 1 reply to Chris L's July 30, 2005 - Hi Chris, Left bundle branch block severely limits the electrical signal from the AV node to the left ventricle, which is the main pumping chamber of the heart. The signal must propagate from the right bundle and ventricle to the left. I do not have this but did just have an ICD implanted July 7th. It was not a big deal. There was some slight discomfort and itching, itching and still itching. If your doctor recommends pacing for LBBB, consider their words as quickly as you can. It is a big decision and only you can make the choice. I wish you the best. E-mail me if you need more info on the procedure I went through. But really, it was not too bad even though I would rather have been out sailing or doing anything else except maybe a trip to the dentist. firstname.lastname@example.org
Roger G's August 1 reply to Tom S' July 30, 2005 - Hi Tom, I am sorry to hear that you are nearing end stage. I do not know that any words I have can express my thoughts on your post to Rita and all of us that come here for comfort and guidance. Perhaps something that a friend told me a few years ago can help. He told me, "Roger, passing is the culmination of our lives. We are borne, we live, we hope to love, perhaps have children, and then we pass on." There is nothing different for any of us. I wish you comfort and all possible happiness. email@example.com
El R's August 1 reply to Chris L's July 30, 2005 - Hello Chris, You asked about the biventricular pacer. I got one in April and am amazed at the difference it has made for me. I had LBBB for many years and a RBBB since 2002 as a result of damage done during the first attempt to place the left lead of my pacemaker. Because I had 2 unsuccessful attempts to place the left lead via a vein, I had a thoracotomy and the lead was stitched to my left ventricle.
My heart now beats properly on both sides, symmetrically as it is meant to, and I have more energy than I have had in years. I feel great and do not run out of breath like I used to. I excercise an hour+ every day. I am back to running agility with my dogs instead of watching from the sidelines. I cannot believe how good I feel. My BNP dropped from the 800s to 122!
I am scheduled for an echo and CPX (Vo2max) test in late August and am looking forward to seeing specific improvement, mainly the mitral valve, which was leaking severely before the implant. I am confident my score for the CPX is going to be greatly improved. :-) firstname.lastname@example.org
Susan F, August 1, 2005 - Hi all, I am a mom of 2 daughters with heart transplants. The girls are now 8 and 11, were both age 6 when their hearts failed. The diagnosis is dilated cardiomyopathy. An unknown virus affected both of the girls' hearts. I've been told their situation is rare, 1 in 10 million. We are concerned, as we have 5 children, and hope that no other member of our family suffers with heart failure. For those of you with cardiomyopathy, do you feel you received good answers to your questions and concerns, especially with genetics? Susan. email@example.com
Cheryl C, August 1, 2005 - Well, I posted my Coreg update but forgot something. I did remember to ask my doctor about CoQ10 and if I could or should take it. He said it was okay but wasn't sure about any real benefit. According to him, the inititial trials using CoQ10 seemed to be promising for repairing the heart muscle, but follow up wasn't nearly so certain. He also said to use it if I want because it won't hurt, so I think I'll get some to try. Someone mentioned a higher energy level I believe, in one of the previous posts. That would be well worth it anyway. Have we got any other proof of the good it does? My brother's girlfriend works at a health food store back in Illinois and she says to be sure to get a good quality product. Can anyone recommend a brand to try? Thanks. firstname.lastname@example.org
Marilyn M's August 1 reply to Yvette's July 30, 2005 - Hi Yvette, Thanks for posting to my message. Like you, I have a tendency to push myself too hard for too long a period. People are always telling me I'm much too hard on myself. I tend to do everything 100% and lately when I do, days later I'm pretty beat and can't even get out of bed. So, its been really hard, mostly because my body is telling me to slow down and my mind says, "You're fine - just keep pushing yourself!"
I'm also concerned about the CHF drugs and what they will do to my energy level as well. My electrician (EP cardiologist) definitely wants me to keep exercising. He said that even if you only get your heart rate up to 100 beats per minute that it's still good and to keep it up. So of course when I have the energy, I do, but I guess I don't have to tell you that some days I just don't have it. It's hard to accept limitations some days. It's frustrating.
I started Coreg a week or so ago and some days I feel so bloated and I can barely get into my pants, then it goes away. I see my CHF doc in a couple of weeks so hopefully I can get rid of this bloating feeling in my stomach. My INR got too high and I had to cut my Coumadin dose per my Coumadin clinic. They said it was no wonder I was getting a lot of black and blues. Hopefully, when I have it checked this Tuesday it will be within the proper range. I have a dentist appointment Thursday and I'd like to get my teeth cleaned but if my INR is too high I can't have it done. It's an hour and half drive from my home to my Coumadin clinic. My dentist will only take my PCP's authorization for any dental work. I can't blame him, but a local blood lab would be alot quicker.
I've had a lot of heart problems over the past 10 years but this low EF and enlarged left ventricle is very hard physically. I hope the mortality stats are wrong and we're able to post 10 years down the road from now. Best wishes, Marilyn M. Runner7891@juno.com
Marilyn M's August 1 reply to Chris L's July 30, 2005 - Hi Chris L, I will be 50 in September. I have an ICD and I didn't think my surgery was that bad. I went in one day and came out the next. My ICD area was swollen afterwards for a couple of months but then the swelling went down and you can't even see it anymore. I've had it 4-1/2 years. I will need a replacement sometime within the next 6 months to a year as my battery is getting low.
You generally get what are called interrogations every 3 to 6 months. They put this "wand" over your ICD and the other end is connected to a computer and it can tell your doctor certain types of electrical activity. It can also give you heart beats if you're not getting enough on your own. It's a highly sophisticated device. Without mine I would have died years ago. I have ventricular tachycardia (VT) and I have been paced out of VT hundreds of times.
I was just diagnosed with CHF and will see a specialist this month. I'm glad to hear you're doing so well on your meds. I will be getting CHF meds. I'm just getting started and hope that my system does well on them. It will probably be a trial and error adjustment. I went into full heart block after my open heart surgery for my mechanical mitral valve so the pacemaker portion of my device has helped me to breathe better with it than if I didn't have it.
The ICD and biventricular device surgery is very similar in that an ICD surgery involves having two leads connected to your heart whereas a biventricular device has 3 leads, but it is very similar. A biventricular pacer, I think has more programming capabilities. It's a big decision and I hope you're able to get all your questions answered. Best wishes, Marilyn M. Runner7891@juno.com
Margaret D's August 2 reply to Susan F's August 1, 2005 - Hi Susan, I e-mailed you but the address was wrong. I am sorry to hear about your girls' heart disease. My guess would be that their DCM was not caused by a virus. They say that when they can't find another cause. I have read that doctors today think that almost 40% of idiopathic DCM is really familial. I have DCM and so does my twin sister. Has anyone recommended that you and your husband and their siblings get tested for DCM? There is a research study about it, and it only requires one-time blood samples and having the echo and EKG reports mailed to them. The site is www.fdc.to if you are interested. email@example.com
Tom S' August 2 reply to Roger G's August 1, 2005 - Hi Roger, I've pretty well come to grips with the ultimate physical insult (death) but in the meantime I feel like the cartoon character that two opposing forces are fighting over, one has my arms the other my legs and they keep pulling and pulling and pulling and I seem to be going two directions at the same time or at least getting stretched out. Death is a certainty but the time it is taking to get there and the uncertainty of that factors is maddening at times. firstname.lastname@example.org
Judy H's August 2 reply to Chris L's July 30, 2005 - Hello Chris, I had an ICD/biventricular pacer combination device put in over a year and a half ago. One of the main reasons was LBBB. Also, I had been on meds for over 3 years but was getting really nowhere. My EF had slipped some. The procedure itself was not bad. I had shortness of breath and this was helped from the start. My skin color was better, my family noticed that right away. My EF was not affected right away, which disappointed my cardiologist but a year later, there has been an improvement. So all does not happen overnight. However, it did happen. I think it was worthwhile. Best of luck with your dicision. Judy. email@example.com
Teresa M, August 2, 2005 - Hello everyone, In May of 2003 I passed out while driving (no accident, thankfully). I had really bad PVCs. Many tests later, I was diagnosed with mild non-ischemic cardiomyopathy. The MD wrote "ominous" in the report!. My EF was 45 to 50% with mild LV global hypokinesis. I had an implanted loop recorder for 12 months (no significant events). I did not drive for 18 months. I now take 6.25mg Coreg BID, which has reduced the PVCs. A recent echo says my EF is 60%. My MD says my cardiomyopathy is gone. I'm not sure how to respond to this. Is that possible? Can these things just go away? I believe in miracles, but how do I move forward after two years of uncertainty? I suppose the answer is one day at a time but does anyone have any other insights? Am I being ungrateful? Thank you. firstname.lastname@example.org
Jon's note: Your heart failure is more likely "well compensated," not gone. EF is no way, no how, the whole ball game.
Marian V, August 2, 2005 - Hi everybody, This is about end-stage CHF. My husband had a 5-way heart bypass operation in 1997. Since that time he had been seeing a cardiologist and on various heart meds. His health, along with his age has slowly declined. It's hard to tell if the problems are from age or heart, but in June he had pneumonia and was in the hospital for 5 days. When he came home he was on amiodarone for arrhythmia, which was discontinued at our last office visit - he sees the doctor every 10 days. He is also on oxygen 24/7, at first 1.5 liters, but that finger O2 meter didn't get over 90 so his O2 was upped to 2.5 liters. He is also on Coumadin (warfarin), Digitex, hytrin (he also has prosrate trouble), Prednisone for his lungs but he will go off it this week, and Zoloft (we lost a daughter last October).
When he has to go to the bathroom at night he gets confused so we got him a urinal. We also - both of us - have problems stumbling over the oxygen tubing. He also uses a cane and a walker so he can go outside (when it stops being so hot). He doesn't like showers but we have 3 sons who live nearby and one of them will come over and get in the tub with him. He's fussy about what he eats (soup is his favorite) but his appetite perked up when he went off the amiodarone. He will be 82 years of age the 21st of August.
When I talked to the doctor, he explained that his heart was not pumping very well, the pump (heart muscle) itself is weak. I understand that not a lot can be done for that. ICDs and so on are more for regulating the rhythm but don't strengthen the pump. We are thinking hospice because they send out a visiting nurse. Our daughter who passed away was a hospice nurse and she was here last summer. When she listened to his chest, she could hear rales.
His father and oldest brother died from heart attacks in their 60s. Our oldest son had 2 heart attacks before he was 40. I see the same cardiologist for a leaky mitral valve. My mother died from a leaky mitral valve when she was 47. That was before they had open heart surgery. My husband still coughs up phlegm, mostly in the morning and late evening.
We used to have a dog, but it died and my husband felt so bad that he didn't want to get another one. However, we have 3 cats - one sleeps with me and another with my husband, and she follows him around and stays with him most of the time. She is a big, fluffy tiger neutered female and could pass for a dog in a dim light.
The reason I am writing is that I don't see a lot of stuff from people who have used oxygen supplementation. Is that because it doesn't do much to actually improve the heart? It is more of a thing that makes people feel better? My husband reads the newspapers, magazines, enjoys the history channel, cusses the news and is generally alert. Would he be this good without the oxygen? I am glad he has it, even if it makes me trip.
I am sorry for rambling on like this. Your comments about hospice are very helpful and we would appreciate anything anyone has to say. Marian V. email@example.com
Yvette's August 3 reply to Marilyn M's August 1, 2005 - Hi Marilyn, Before I started excersising regularly, my cardiologist recommended that I take a heart failure "course" to give me additional info, most importantly to get me starting to exercise, which was just what I needed. I know it seems to go against the way you feel, but the more you exercise, when you do have your bad days they won't feel as bad. You will notice that you don't feel as bad as you used to feel. Another bonus is that movement helps reduce fluid retention because you are helping your heart to push blood throughout your body. The water retention is because your heart is not pushing as much blood through your system for your organs so to compensate, your body sends out chemicals that forces you to retain the fluid you have and any that you take in.
My left side is dilated too, so I know what you feel. Remember that is the side that pushes the blood throughout your body and the compensation mechanism that, in the short term, is a way of protecting you when you are in our situation that's not a good thing because it overcompensates. I can't tolerate the heat very well either and I swell more during the summer. This makes it very difficult to control my fluid intake, which they still want pretty low at 54 oz daily.
Concerning your INR, the highest mine ever got was 8 and that was my fault. I hope you are not taking any NSAIDs at the same time you are taking your Coumadin, as that will adversely affect your INR. NSAIDs include aspirin, Advil, Motrin, Aleve and their store brand equivalents. firstname.lastname@example.org
Tony M's August 3 reply to Marian V's August 2, 2005 - Hi Marian, I read your e-mail and I am truly sorry to hear of your family's health and the problems your dealing with. Please don't worry about rambling, sometimes hitting the keys on the typing board can relieve stress just like being able to talk to a friend and unload some of your stress and problems and get it off your chest.
I don't have the smarts about this diesase like Jon and others who respond more to the medical questions but I read everyone's e-mail and I don't gloss over them and I try to wish that person gets help with their problems. I hope things get better for you soon. Tony M. email@example.com
Roger H, August 3, 2005 - Hi everyone, You probably all know that when you go to the hospital, you really have to watch things for yourself. An example is June 12th I was admitted and I just told them with the IV that I didn't want them to be pumping a lot of sodium or sugar into my body. Next thing, they changed the bag and lowered the drip. A lot of the doctors nurses and the hospital staff really don't know a lot about CHF and low sodium and the carbs as far as keeping sugar levels down.
I go in for surgery Friday to get a section of colon taken out and will probably have to go through the whole thing again. I had to talk to the nutritionist/dietition to tell them just what I could have. They said my wife may have to bring in some of my food for me. My cardiologist was going to send a note to the hospital to make sure they knew of my low sodium requirements. I am looking forward to getting the surgery done and getting on with my life. I know the Lord is with me in every situation.
I would appreciate your prayers. Thank you. Rog. firstname.lastname@example.org
Susan D's August 4 reply to Jon's August 1, 2005 - Hi Jon, I really didn't mean to sound defensive. The fact that people dealing with end-stage heart failure in a hospice setting may not be getting the understanding and care that they require for a peaceful life and death is, to me, alarming. Is it more alarming than not getting the care one needs at other stages of heart failure? Not at all. I did not feel you were attacking hospice, your information has led you to your conclusions. I was simply offering my experience in the setting, which I am thankful is different than what you have been told others have experienced. I'm sorry you are currently dealing with the hateful serious fatigue and hope you feel better today! email@example.com
Peter S' August 4 reply to Cheryl C's August 1, 2005 - Hi Cheryl, I first heard of CoQ10 from Jon's web site and not from either my internist or cardiologist. My internist rendered the following opinion when I told him (just within the last 10 days) that I had started taking it: "Statins (such as Lipitor) do diminish CoQ10, but it is still unclear whether oral tablets are effective in getting the CoQ10 into the blood stream in a way sufficient to compensate." In other words, he saw no harm and possibly some good in my taking the CoQ10, but was merely saying that there was no clear evidence that the pills could do their job. As a side note, I have never felt muscle fatigue that I could attribute to statin use but I am still taking CoQ10 at 60 mg twice a day just in case. Unfortunately, it is kind of expensive. PeterSperl@cs.com
Lowell P, August 4, 2005 - Hi Jon, I had a visit with my doc today and don't think I agree with him. I began taking 75mg Avapro once a day about a month ago. At that time my BUN was about 30 and my creatinine at 1.3. The lab report today said my BUN was now 67 and my creatinine 1.8. My BNP was down to 650 from 950. My doctor thinks I am too dry and wants me to cut my Lasix dose in half. I have had a BNP over 900 many times with a BUN around 30. It seems to me it is the Avapro. He doesn't think so. My legs have become very tired lately when I walk and he also thinks that is too much Lasix. I hate to quit the Avapro without his blessing but am afraid for my kidneys. Any opinion on this Jon, or anyone? The info sheet for Avapro says to use caution if you have kidney problems. Thanks, Lowell. Lpepper3m@aol.com
Jon's note: Too much diuretic will wear you out faster than almost anything. However, the kidney test results are significant so I would try cutting the diuretic for a week or so but no longer, to see if I improved. Switching your ACE inhibitor to fosinopril will reduce the load on your kidneys.
Scott Brown's August 4 reply to Tom S' July 30, 2005 - Hi Tom, My father was in end-stage CHF for a long time, requiring oxygen to breathe. He had lots of coughing, lots of nights up, cold feet, and plenty of other stuff. However, he knew his limitations and he still made out alright. End-stage heart failure is not the same for everyone. If you qualify, I hope you consider a transplant. It could change your life. Best of luck. Scott B. firstname.lastname@example.org
Scott Brown's August 4 reply to Roger H's August 3, 2005 - Hi Roger, You make some excellent points. The more time you spend in hospital, the more opportunity there is for someone at the hospital to mess up. I think there are times where a saline IV drip is used in CHF patients, according to what paramedics told me, when blood pressure is dangerously low, they will use the saline solution IV to bring blood pressure back up and then use diuretics to slowly reduce sodium. It's a thin line we CHFers walk. Scott B. email@example.com
Scott Brown's August 4 reply to Marian's August 2, 2005 - Hi Marian, Oxygen is normally only used as a "last resort" to make a patient comfortable instead of constantly being short of breath. Doctors normally try to wean patients off oxygen after an event such as pneumonia, which can take an extended time to recover from. The difficulty is that once a person starts on oxygen, the human body gets used to the oxygen and requires the oxygen just to be comfortable. It's not an optimal situation.
Do you have a way to measure your husband's blood oxygen level? Is it a low level which the doctor thinks causes the confused state you describe? The flip-side is that your husband may be at the stage where you have accepted that nothing more can be done to improve his condition. It's good that oxygen is available for this situation. With regard to the oxygen tubing, how long is the tubing you are using? Do you keep it in a different room from your bedroom? Thanks, Scott B.
My father used oxygen for about a year. firstname.lastname@example.org
Tom S' August 5 reply to Marian's August 2, 2005 - Hi Marian, I've been on supplemental oxygen for nearly six months and experience some of the problems you discussed. Is your father on an "as needed" basis or 24/7 with his oxygen? I find it easier if I walk to my destination either with the cannula off my nose and in my hand in a loop with the excess tubing so I can maneuver it to wherever I want to plop myself down. I also let one of my children bring it to me if I am particularly tired and can't deal with it. I have a little over 50 feet of tubing on an oxygen extractor machine.
When I am not on the extractor I have individual bottles of oxygen that are equipped with a PulmoDose battery-operated demand valve that conserves and extends the number of hours from four to 22 hours of oxygen available in a bottle. email@example.com
Mary D, August 5, 2005 - Hi All, I am just checking in with a simple question. I was diagnosed with DCM in January of 2005 with an EF of 25% and was put out of work and onto meds of Toprol-Xl, Lasix, Aldactone, Altace, digoxin, and 81mg of aspirin. I had a MUGA done yesterday. My EF came back at 53%. That is wonderful, but why do I feel worse now than in January? My chest hurts and I get out of breath with the smallest effort. I also have a dual pacemaker because of sick sinus syndrone, bradycardia since 2001.
I guess I'm afraid that my employer will see that my EF has come up to almost normal and want to discontinue my disability and tell me to go back to work. I work for Frito-Lay, and I can't go back to delivering chips to grocery stores with the way I get out of breath. Has anybody ever had a problem with being on long term disability, and having an improvement of their EF and their work tell them they don't qualify anymore and have to go back to work? If so, what did you do?
Maybe I'm worrying for nothing, but I just don't know how much the EF number means to qualifying to stay out. Sorry for rambling, just needed to vent. Thanks, Mary. firstname.lastname@example.org
Mary M, August 5, 2005 - Hi, Bob is now on day 20 without amiodarone. He had a visit today with his cardiologist. They ran a heart strip and his heart is pumping better and in perfect rhythm, all without amiodarone. He had gained back 4 of the 10 pounds he lost, and feels so much better. The doctor was so impressed that they are not going to give him any replacement drug. His heart appears to be much stronger. We are so happy, I can see a big difference in him. Praise God. Mary. email@example.com
Jon's note: When people do better, it's easy not to come back and update us - thank you for doing so. Please keep us posted!
Joy K's August 5 reply to Marian V's August 2, 2005 - Hi Marian, I hope your husband is still enjoying his history channel, magazines and the newpapers. I think we would all like to cuss at the news once in awhile. I am sure you know that medical therapy for CHF consists of reducing oxygen requirements and optimizing cardiac output. These are done in a variety of ways that include (just a few listed) rest, positioning, and medications. Oxygen is a treatment just like a drug and can be of considerable help when needed. Unfortunately oxygen does not make the pump itself any stronger. I would look at how long the oxygen tubing is. The reason I say this is because if it is too long your husband may not be getting the correct amount of oxygen (liters per minute). Long tubing is great to help promote mobility. Yes, be careful you don't trip over it too! However, if too long, the dose delivered may not be the right one. Pneumonia remains a difficult and challenging illness to overcome without CHF and other heart problems, and yes, age. I hope your husband has a wonderful 82nd birthday. Joy. firstname.lastname@example.org
Lowell P's August 5 reply to Jon's August 4, 2005 - Hi Jon, I am not scheduled for lab work for another month. I think it is too much of a coincidence that my BUN should double after taking the Avapro for a month. I have been taking the same amount of Lasix for a year. It will be awkward to tell my doc that I want to be tested sooner for BUN and creatinine. I intend to stop the Avapro now. Will this situation reverse by discontinuing the Avapro, if it is the Avapro? Thanks, Lowell. Lpepper3m@aol.com
Jon's August 5 reply to Lowell P's August 5, 2005 - Hi Lowell, I don't know but eventually it should. Please remember that being on the same dose of any drug for a long time in no way makes it the right dose now. A CHFer's body is a constantly changing system in a constantly changing environment, so we have to be flexible. Changing a drug or a dose for awhile to see if it does the trick is one of the best ways we can monitor and manage our own illness.
Why not reduce your Avapro dose and change the diuretic use pattern or dose, then see what test results show in a month? Just a suggestion - when it's your body, always follow your own instincts! Long-term, it might be wise to switch to fosinopril for your ACE inhibitor and see if you can get by on less diuretic, possibly also eliminating your fluid intake restriction. Remember that diuretics stress the kidneys as well - that's where they take action and increase activity. Jon.
Rita C, August 5, 2005 - Hello again, Thank you all for information about end-stage CHF and the care available. This question is about confusion and end-stage CHF. My mother suffers from this ever since her acute kidney failure 6 weeks ago. I have read that the confusion comes from poor kidney function, but I have also been told by our cardiologist, nonchalantly, that it's a symptom of end-stage CHF. My mother is confused most of the time but sometimes comes close to normal for short periods, usually after a sleep. I feel that there is hope maybe, if she is coming out of the states.
Her confusion is not so bad that she does not know who her family and friends are, but she forgets what day it is and when in bed, if it's day or night. She also doesn't not talk unless asked a question. Her level of confusion varies a little too from day to day and also from within same day. I would appreciate to hear from someone who has experience with this and any suggestions. Is it common in CHFers?
My mum is on the usual CHF meds, but takes 1000mg Lasix per day (yes, 1000) and has been taken off ACE inhibitor and beta-blocker. Many thanks and kind regards to all. email@example.com
Lowell P's August 7 reply to Jon's August 5, 2005 - Hi Jon, Thank you so much for the encouraging reply, Jon. I have done as you suggested and will try to tactfully suggest fosinopril to my doc some time later on after my next blood work. I have an excellent rapport with my doc and don't want to screw it up by acting like I know too much, or critical of his choice of medications. You hear this often Jon, but your counsul and input are so valuable and I hope this site never disappears. Lowell. Lpepper3m@aol.com
Doreen W, August 7, 2005 - Hello everyone, I was diagnosed with non-ischemic dilated cardiomyopathy in April. My EF was 20 and I began Coreg, lisinopril and Lasix. The diagnosis was confirmed by cath. All along, my doc said I would need a biventricular pacemaker/ICD after upward titration of meds. He said this was very, very serious. At the beginning of June, I had a followup echo and was then going to be scheduled to see an electrophysiologist.
When the doc came into my exam room, he indicated that my test results were interesting but before he told me, he wanted to know how I was feeling. I said if I didn't know better, I was feeling as bad as I did in the beginning. He than told me that my EF had improved to 40% - good news! He said he would see me in 6 months, bye, bye now.
However, my physical symptoms are not improved. I started cardiac rehab and can hardly bear even the lowest exertion. Alhough my doc is responsive, I feel like he sees the tests and they show I shouldn't have any symptoms. After being hospitalized in July for mondo kidney infection, he thought better about seeing me more frequently. Does this often happen? Should I get a second opinion? Am I crazy? Thanks. DWhite9520@comcast.net
Samuel R, August 7, 2005 - Hello all, I am looking for a doctor in Atlanta, Geogia. My doctor is great, and told me to file for disability in February but now that I am working with an attorney for SSD he is backing down, saying I am very improved, although I do not feel any better. Is it possible for a person with an EF of 15% to take meds for less than 6 months and suddenly have an EF of 50%? Keep in mind the symptoms have improved, but have not gone away by any means. firstname.lastname@example.org
Norma L, August 7, 2005 - Hi everybody, I am confused, my doctor took me off Mavik, an ACE inhibitor, last week. I have been having a problem with much swelling in my ankles and lower legs - would this be a byproduct of off Mavik? My blood pressure was going too low and I was dizzy all the time before, but not since I am off Mavik. Should I ask my doctor? He just had another echocardiogram done and said everything is okay, but what does that mean? email@example.com
Marty C, August 7, 2005 - Hi, After two years of living with all that comes with CHF, I got some surprising news yesterday - my BNP was down to only 52! I know this is good but having been on all the meds I have, I guess I have to be careful about how happy to get about this result. Maybe it's just a function of the drug therapy and not the great prognostic indicator I'd like it to be. Previously my BNP level was over 500 and reading all that I have on this phenomenal web site (super kudos, Jon) has led me to be careful how I interpret any results, focusing more on how I actually feel.
Of course, how I feel ranges from top of the world to completely sapped of any energy whatsoever, depending on which day of the week it is! Blessings to all of you, and Jon - I hope you enter into another season of feeling great real soon. Marty. firstname.lastname@example.org
Sue H, August 7, 2005 - Hello, I took my husband to the emergency room yesterday because he was experiencing muscle weakness in one of his legs. He had a quadruple bypass last November so we are very cautious. They ran a ton of tests and everything turned out okay except a slightly elevated "muscle enzyme" level not connected to the heart, the doctor said. He thinks it could have been from the ton of exercise he does - an hour and a half every day.
Could it be a drug reaction? He's on Lipitor, which I've heard can cause muscle weakness. He also takes a beta-blocker, Altace and Coumadin? He's also been experiencing vision problems, he sees patterns like an aura. He's seeing a specialist about this next week. Has anyone else had muscle and vision problems that are side effects? Thanks in advance for your kindness and help. Sue. email@example.com
Sandy H's August 7 reply to Peter S' August 4, 2005 - Hi Peter, I don't know if you have prescription insurance or not, but my insurance pays for my CoQ10 after my doctor wrote a letter of medical necessity to the insurance company. firstname.lastname@example.org
Mary Anne, August 7, 2005 - Hello, I've had cardiomyopathy for 5-1/2 years now. The cardiologist and electrophysiologist both recommend an ICD implant for me. A biventricular pacemaker was rejected because I am supposedly doing too well, and I guess that's good? My EF has gone to 30% from 22% at diagnosis. I have had CABG x 3, and a mechanical mitral valve replacement.
Several weeks ago, my PCP recommended an MRI for follow up on periodic vertigo. The MRI revealed that I had had a small recent stroke in the left parietal area of the brain. I don't think I've had any noticeable damage. They did a doppler of both carotids and contrast echo, nothing has changed. I wonder why I had a stroke when I am on Coumadin regularly for my valve and my blood pressure is under good control.
I think I fear a stroke more than CHF and want to do all I can to prevent them. Any suggestions? email@example.com
Sandy N, August 7, 2005 - Hi Jon, I wanted to share some news about a new heart failure medicine for black patients. (Jon's Note - I am substituting the New Page url, where this was reported earlier. This is actually a combination of two very old CHF meds). See chfpatients.com/new/new.htm#bidil. firstname.lastname@example.org
Roger G's August 9 reply to Doreen W's August 7, 2005 - Hi Doreen, No, you are not crazy! Perhaps the Coreg is bothering you. It is a powerful med and takes awhile to get used to. My EF went from 25 to 45% but I felt worse while I was getting used to the Coreg, about 6 months. rogergthree2earthlink.net
Tony M's August 9 reply to Sue H's August 7, 2005 - Hi Sue, I have had cardiomyopathy since 2001 and I found out quickly it was Lipitor that made me weak and tired. The doctor had me quit it for a couple of days and I quickly felt energized and when I started back I went right back to feeling weak. It made my thighs feel like they were drained when I was walking. I take niacin now but I found out that Lipitor doesn't agree with about 30% of the population, according to a friend of mine who's in the drug business (sales). It blocks the good and bad stuff coming out of your liver and that why you feel weak. Tony. email@example.com
Blair R, August 9, 2005 - Hello, After 18 months of drug therapy since diagnosis, my EF has gone from 37% to 61% and my idiopathic dilated cardiomyopathy has virtually disappeared with no abnormalities in my heart wall motion per the last MUGA. The problem is my cardiologist doesn't seem to know what to do next. He has said that in 3 more months he will start taking me off the Ace inhibitor and beta-blocker drugs and follow-up with a MUGA 6 months after that. He also said I can start training for triathlons again. I was an age group triathlete when first diagnosed.
Has anyone heard of a CHFer going off of these drugs entirely? Everything I've read says your on them for life, and my regular doctor thinks my cardiologist is exploring new territory with me. Any thoughts? firstname.lastname@example.org
Jon's note: Right now, experiences reported here run 3 to one, bad versus good, after stopping meds following clinical improvement. So some can do it fine but 3 times as many CHFers deteriorate, sometimes very badly, after stopping meds.
Yvette's August 9 reply to Sue H's August 7, 2005 - Hi Sue, Concerning you husband experiencing weakness especially after exercising, yes, some of the meds he may be on do have a side effect of causing muscle weakness. If this is an unbearable side effect then he needs to talk to his doctor about changing his meds one at a time to find out which one is causing the problem. Also, consider that he just may not be able to tolerate the summer heat as well as he used to.
However, by all means don't do as I did and go cold turkey on the meds! I had the problem once, it was caused by my blood pressure med, when they changed it everything was fine. email@example.com
Jon's August 9 reply to Sue H's August 7, 2005 - Hi Sue, You say he only reports this weakness in one leg. That worries me. Have him see a doctor for this as soon as possible. Jon.
Scott Brown's August 9 reply to Rita's August 5, 2005 - Hi Rita, Do you know your mother's blood oxygenation level? If it is low (due to poor heart function), this would explain the confusion. If it is normal, things like a high temperature or antibiotics can cause confusion. It is not the heart failure itself causing the problem but rather one of the symptoms of the heart failure. Confusion is not necessarily a symptom for all end-stage heart failure patients.
My dad had a tendancy to pick up lung infections, and the powerful antibiotics or high fevers would make him confused. We thought he had brain damage but once he got to feeling better, it was not an issue. However, it could last for weeks. Scott B. firstname.lastname@example.org
Scott Brown, August 9, 2005 - Hi Jon, I am making my family aware that if I pass away, I would like people to donate to this board in leiu of flowers or other charities. This board does so much good for the heart failure community, I cannot imagine how money could be better spent. I wish your board had charitable status in Canada - that would be a bonus. Regardless, I submitted a small donation today which I can easily afford. I'm so glad the board did not go away. Thanks, Scott Brown. email@example.com
Terry S, August 9, 2005 - Hi, I have CHF and had a 5-way bypass 2-1/2 years ago. One year ago I had 3 more blockages, all at 100%. Forty percent of my heart muscle died and my EF is 25%. I have a problem with edema. The problem is that I also had my large intestine removed 34 years ago. Because of this I have a problem with dehydration. I need to drink a lot of fluids and I use salt to help retain some fluids. Now because of the CHF I am told not to use salt and watch the fluid intake. Anyone that has suffered from dehydration knows how bad the cramps can get. I have not been able to find anyone to help me determine how to maintain a state of hydration that is not too high and stay away from dehydration. This situation can change daily depending on temperature, humidity, sweating. I think it is something I will have to deal with since I know my body's funtions better than anyone but will most likely shorten my life. firstname.lastname@example.org
Jon's note: You'll want to reconsider the standard sodium and fluid restrictions - what works for you in your specific situation is the way to go, regardless of what works for "most" people with heart failure.
Donna V, August 9, 2005 - Hi everyone, I've had a biventricular pacemaker since late November of 2004, and have experienced nothing but very, very good things. It really is a wondrous thing for me! This past weekend I went into a few stores like Penny's, Books A Million, and Best Buy. No one paid me any attention as I set off their alarms. They were loud. I knew it was me setting off the alarms. I'd not shoplifted and and had no packages. I was ignored. I did not linger by the security devices because the patient information from Guidant says not to to linger by magnets but I just walked in or out the door.
My device was among the Guidant recalls. It was reset so it is beeping and such and now makes me nervous. In my head I know it's okay. I know not to linger around magnetic things. This weekend seemed weird. Any thoughts from anyone? Several of my sharp friends from the site have sent me theories and opinions, most of which make perfect sense, from "forget it" it to "get it checked out." So far not a one of 'em has beeped?
I also heard from Pat from New Mexico. She's at the top of the transplant list now. I imagine prayers for her could be very important. She was the first person I ever talked to from this site. Donna V. email@example.com
Jon's note: Because the device recalls and alerts have been changed over time, I strongly suggest contacting both Guidant and your EP cardiologist about your device. Tell them straight out that it is making you nervous and you want some definitive information on your specific device. This is serious and you should not be left nervous about it.
Jennifer G, August 10, 2005 - Hello, I have a question: I am scheduled for surgery to have my gallbladder removed. My question is, has anyone had problems with how their heart failure and heart medications react to anesthesia when undergoing surgery for something other than the heart? I know that sounds like a dumb question, but it's worrying me a lot, especially since I have an irregular heartbeat and frequent sensations of tingling in my fingers, lips, toes and the tip of my tongue. I take Coreg, Lasix, Lanoxin and potassium. Thanks for any input. firstname.lastname@example.org
Sue H's August 10 reply to Jon's August 9, 2005 - Hi Jon, Thank you so much for your care and concern. This site is the best! My husband, who was experiencing weakness in only one leg, was totally checked out at a hospital. They did everything and even tested for blood clots but all was fine so they released him.
However, two days later he was experiencing weakness all over and dizziness so I took him to the emergency room and his SVT (supraventricular tachycardia) was acting up. He had already been diagnosed with this a year ago but it has never acted up for a long period of time. Within 20 minutes they had his heart rate back to normal but they kept him in for monitoring for a few days.
Unfortunately, it was the drug amiodarone (with a small amount of digoxin) which lowered his heart rate and today they're starting him on a tablet form of amiodarone. They're talking to his cardiologist today as well about the possibility of an ablation. Does anyone have advice about ablations and the drug amiodarone?
By the way, my husband is having a ton of fun! He's in a little country hospital and the nurses and doctors are great. He's really not sick, his heart rate is controlled and he's eating them out of house and home. I don't think he wants to come home! Thanks in advance for any advice you have to give. Sue. email@example.com
Tonya H, August 10, 2005 - Hi, I am looking for a CHF doctor in the Richmond, Virginia area. I have left bundle branch block and my EF is going lower. Can anyone recommend a doctor in my area? Thanks. firstname.lastname@example.org
Donna V, August 10, 2005 - Hi again, I did call Guidant about my biventricular pacemaker setting off some store security alarms. The tech's first response was, "How embarrassing." I've had the implant for almost nine months now but this was a new thing, since the reset after the recall, to happen in any store. I was assured that the security alarms would not affect my device. I was told that Guidant has had calls about the same thing from time to time, but they could not test anything without the names of companies that manufacture the store security systems. I'll find that out the next time I set one off.
I put my travel card in my wallet anyway. I'm also on Guidant's e-mail alert list. It was three weeks after I'd been reprogrammed that my EP surgeon's office sent out letters. Both he and my CHF specialist are in a different city from where I go for device checks. Thanks again. Donna V. email@example.com
Noel B, August 10, 2005 - Hi Y'all, I have a Guidant Contak Renewal ICD, which is on a Class 2 recall status, but with the magnetic switch reprogrammed per Guidant's recent instructions. I believe the magnetic switch in question, when reprogrammed to "off" eliminates the ICD's ability to deliver a shock in an emergency, when signaled to by placement of a magnet over the implant area. In view of this, I have requested Guidant to verify, in writing, reimbursement to me of product replacement and all related medical expenses not insurance covered.
They presently allow replacement with a Guidant product and maximum $2500 in related expenses "when approved by the physician." Considering their recent product problems and handling thereof, I don't want another Guidant and $2500 won't cover expenses. They have not responded. In view of recent product problems and their track record of delayed notifications, I have lost faith in them and the product. Comments? Advice? firstname.lastname@example.org
Peter S' August 11 reply to Jennifer G's August 10, 2005 - Hi Jennifer, I am a CHFer who needed a a non-heart surgical procedure last year involving anesthesia. The surgeon required as a matter of course that I be "cleared" for the operation by my cardiologist or family doctor - which I was. This is pretty much standard procedure, both for the protection of the surgeon and the patient. PeterSperl@cs.com
Amy W's August 11 reply to Tonya H's August 10, 2005 - Hi Tonya, I drive 2 hours to see my doc in Richmond. He's an EP doc. I see him for my arrhythmia, DCM, and CHF. He's at MCV (Medical College of Virginia Hospitals). I'm sure if you check there, you will find a really good heart failure doc. They have top docs there. I was just up there yesterday. Good luck, Amy. email@example.com
Amy W's August 11 reply to Jennifer G's August 10, 2005 - Hi Jennifer, I have V-tach (my heart also stays in a bigeminy rhythm, never comes out of it). I also have DCM and CHF. In the past 3 years I have had gastric bypass with removal of gallbladder surgery, foot surgery, and a triple hernia repair with an abdominal plasty. I was also put under for my second ablation. I made it through just fine. My surgeons kept in contact with my heart doc throughout and was advised on the course to take related to the heart and meds. As long as your heart doc lets your surgeon and anesthesiologist know about your condition and meds (which your surgeon should already know since you should have told him already about your heart). Good luck to you with your upcoming surgery. Amy. firstname.lastname@example.org
Donna H's August 11 reply to Donna V's August 9, 2005 - Hi Donna, How often is your device beeping? When my husband went in to have his device reset because of the recall, they made it beep so that we would know what it sounded like. They said it would beep so many times (16 times, I think) then quit for awhile, then do another series. They also said that any time it is beeping, go to the doctor and along with a Guidant technician, have it checked out. It is only supposed to beep to warn you that the battery is getting low or it needs checked.
Now for a quick update on my husband: At Christmas he had the third wire attached on his BiV pacemaker and the turnaround he has made has been nothing short of miraculous. Last year his EF was under 10% and he could barely walk a few steps at a time. Our only vacations were days, then weeks, in Club Med.
Within a few weeks after having the third wire attached, he was feeling much better and his EF was up to 40%! He wanted to go on a camping trip this summer so we headed for the woods of Michigan. We set up our teepee and primitive-camped for 10 days. Our kids helped us a lot but he was able to enjoy himself and even cooked on the campfire, and managed to walk a little more each day! Before we left home, he rigged up a car battery so that he could sleep with his CPAP. He got home tired but has managed to avoid going into heart failure.
Last summer we weren't sure he would live to Christmas so a camping vacation this summer was a huge accomplishment. We know that it was not just the new pacemaker but also God's hand that has gotten him this far. email@example.com
Norma L, August 11, 2005 - Hello everyone, My doctor took me off Mavik and started me on Avapro. After he took me off Mavik, I started swelling in my ankles and legs, ugly! I don't know if going off Mavik caused this or not, he didn't say. I don't think they always know for sure what your reactions are from! I go back in a week to be checked again. Also, my nose has been blistering and peeling, I was wondering if I am out in the sun too much? firstname.lastname@example.org
Roger H's August 11 reply to Jennifer G's August 10, 2005 - Hi Jennifer, I just got home from surgery and had no problems with any reactions of any kind. I too have an irregular heartbeat. All I have now is a row of staples 5 inches long that come out next Tuesday. I made it through all in pretty good shape. Thanks to all for your prayers. Rog. email@example.com
Karen K's August 12 reply to Jennifer G's August 10, 2005 - Hello Jennifer, Having just recently had surgery (eye muscle realignment) performed under a general anesthetic, my suggestion regarding your surgery would be to have your heart doctor work with your surgeon and anesthesiologist. I'll be honest. My opthamologist had me quite concerned about even considering the surgery and I was followed very closely by my cardiologist. The surgery I had was done in short stay but they had strict guidelines set by my cardiologist as to whether to keep me overnight. Fortunately, I went home the same day.
It's two weeks ago today I had the eye surgery (in both eyes). Yesterday the opthamologist injected two eye muscles with Botox, which made an instantaneous difference in my vision. I had not been at all concerned about the outcome of the surgery but for two weeks was having a very difficult time seeing clearly and there was no way I could read the newspaper. I now feel confident I'm on the mend and am so happy to see fairly clearly again. Karen. firstname.lastname@example.org
Kate's August 12 reply to Noel B's August 10, 2005 - Hi, I too have a Guidant Contak Renewal device included in the Class 2 recall. The switch in question does not prevent the defibrillator from functioning. The magnet switch in this model might stick in the closed position. In normal device function, application of a magnet closes the magnetic switch and enables the magnet mode that controls temporary device function. If the magnetic switch becomes stuck in the closed position, treatment of ventricular tachyarrythmias is inhibited. In other words, you won't get a shock. Guidant says that 4 occurences have been confirmed out of approximately 46,000 units. They say that in those 4 cases, patients or physicians were alerted to the condition by device tones that signaled that the magnetic switch was closed.
Having the "enable magnet mode" turned off means that should you need any surgical procedure that requires electrical equipment use, the surgeon will need to call a rep from Guidant to be there to temporarily disable the ICD so no shock is inadvertently administered. What normally happens is the anesthesiologist places a magnet over the device which temporarily shuts off the device. When the magnet is removed the device starts right back up again. With the switch turned off, they cannot use a magnet to disable the device. They have to have it done by a Guidant rep or electrophysiologist.
What I was told is that I need to have a medic alert bracelet that tells doctors that my "enable magnet mode is switched off." Should, heaven forbid, you be brought into an emergency room and you are not able to talk, the docs will know that they cannot disarm your device with a magnet. I had surgery last September before all this recall business started and they used a magnet to shut the device off during surgery and I had no problems whatsoever.
Also, you have to make sure that the leads running to your heart are compatible with other manufacturer's models. Guidant will not pay for you to have a device made by someone else implanted. That is like asking Ford to replace your lemon Ford with a Chevy. Ain't never gonna happen! Kate. email@example.com
Bill H, August 12, 2005 - Hi everyone, I hope all is well. With all the changes we go through, most are not much fun but some are a little quirky. I for one have become obsessed with keeping my kitchen floor spic and span clean, and putting food in my shopping cart in a orderly matter. What's up with that? I know I'm not the only out there like this, so for a litle fun, let's here some of your lighthearted changes. firstname.lastname@example.org
Jon, August 15, 2005 - Hi everybody, Sorry about no weekend posts, I'll play catch up today. I gained 7 pounds Friday and had a bad day Saturday so I took it easy Sunday as well. I've added arginine to my supplements to see if it helps my energy level and I see my PCP later this week to see if some of this is from something besides my heart. Amazing, isn't it, that with "normal" heart function and a low sodium diet, I can still be nailed by 7 lbs of fluid in 24 hours? I actually peed off 9-1/2 lbs in 3 hours after taking Demadex. Jon.
Patricia P's August 15 reply to Bill H's August 12, 2005 - Hi Bill, Do you count things? I have obsessive compulsive disorder and get obsessed with clean sometimes. I wash my hands a lot and count everything. It can really be a pain. Patricia P. email@example.com
Marty C's August 15 reply to Bill H's August 12, 2005 - Hi Bill, This illness definitely changes all of us. From a very basic change in our concept of living and dying, we end up seeing most everything with new eyes, I think. Thus, the quirks! The sincere commitment to live as long as possible, as well as possible, has made me do some weird things. For one, my wife teases me about my nearly obsessive compulsive sleep habits, due to problems getting to sleep. I know that I must go to sleep at the same time each night to stay close to functional at work the next day. So at 9:00 PM every night I begin my daily shutdown checklist, taking meds, getting each piece of clothing ready for the next day, even buying a new coffee pot with a timer, so my decaf coffee will be ready the next morning.
I've never had that attention to detail in my life before, and she is so good about it, she just laughs. When she sees that bedtime is approaching, she'll say things like "10 minutes to Wapner!" (from the movie, "Rain Man") Life has changed for us. We can either roll with it, fight it, or decide to be a victim until we die. I say roll with it, pray a lot, and focus on what matters - loving one another.
God bless all of you. May His grace and love shine upon you. Marty. firstname.lastname@example.org
Susan D's August 15 reply to Bill H's August 12, 2005 - Hi Bill, This made me laugh! It can't be only CHF patients. I think this affects the entire family. The patient in our family is obsessed with the way the toilet paper hangs on the wall - over, for Pete's sake - not under. Items in the fridge now must be stored in height and color order; tall stuff cannot be in front of short stuff, no red containers next to green. He never cared about any of this before. To make matters worse, I have taken on a dusting fixation, my husband a sweeping the sidewalk fixation, and even the dog has forsaken all toys except the blue ball.
I think my own fixation is an effort at controlling some part of something in the face of a disease that acts like a moody teenager. Mostly we laugh about this and poke fun at each other, but perhaps an upside to CHF is that some of us have a cleaner house? email@example.com
Mary Anne's August 15 reply to Jennifer G's August 10, 2005 - Hi Jennifer, Since diagnosed with CHF in 2000, I've undergone 3-way CABG, a mitral valve replair, gallbladder surgery (all in 2000). Since then I've had an endograft repair of an abdominal aortic aneurysm and am scheduled to get an ICD in September. I went through the surgeries very well, although I had a short run of V-tach after the aneurysm repair. I was on amiodarone for a year, first at 200mg for atrial fib and then to 400mg when the V-tach occurred. I took myself off it (gradually) and have experienced no problems.
As long as your surgeon is aware of your heart problem and your cardiologist or PCP clears you for surgery, you should do well. Good luck. firstname.lastname@example.org
Jon's August 15 reply to Jennifer G's August 10, 2005 - Hi Jennifer, I'd like to make a suggestion that I would use if it were me having surgery. I would arrange for an anesthesiologist to remain in my operating room throughout my entire surgery. Usually a nurse anesthetist remains in each operating room while an anesthesiologist "roams" from operating room to operating room to make sure things are going okay. I suggest having your cardiologist call for an anesthesiologist to be there for your whole surgery. Jon.
Olga C's August 15 reply to Jon's July 25, 2005 - Hi Jon, I am a little concerned about the post regarding Toprol-XL. On my last visit to the cardiologist I asked if I could try Toprol-XL. Kaiser Pharmacy gave me 50mg metoprolol as a generic substitution. Just to be sure I looked this up in The Pill Book, New and Revised 9th Edition. On page 657, metoprolol is listed as the generic for the brand names Toprol-XL and Lopressor. Would you be able to find out more about this?
I really have had a tough time tolerating any beta-adrenergic blocking agents. I have only been taking 12.5 mg daily and wonder how much I would have to work up to to feel any good effects. My EF on my last visit was indicated by a phone call at 20% capacity which is not good at all. Your site is just great and I have been reading it for a number of years. I need to pay more attention and do the things that will really help me. I'm 78 years and have so much more to explain about my condition but I wanted to get this note on to you. The diuretics I take keep my blood pressure pretty low. Thanks for any help and suggestions you may put forth. email@example.com
Jon's August 15 reply to Olga C's August 15, 2005 - Hi Olga, The post was accurate and came straight from the US FDA's CDER office. Metoprolol is metoprolol tartrate, while Toprol-XL is metoprolol succinate. They are not the same, certainly not where heart failure is concerned. See the beta-blocker page where this is explained in detail: chfpatients.com/coreg.htm#not_the_same and chfpatients.com/coreg.htm#comet. This difference is what caused the COMET trial investigators so much grief. Have your cardiologist not allow substitutions or generic equivalent on your Toprol-XL prescription. Since Toprol-XL is so much cheaper than Coreg, Kaiser should not complain. Have you considered trying Inspra? Jon.
Marilyn M's August 15 reply to Noel B's August 10, 2005 - Hi Noel, I have a Guidant 1861 ICD and this particular device is on the first class recall list. Like you, I don't want another Guidant product. It's not to say that these devices can't be perfect but I was very upset to think they knew about these malfunctions for 3 years and never told us. That was when I lost my trust in their medical judgement regarding my life and what is in my best interest.
I'm waiting for my battery to die and then I'll have a Medtronic ICD device inplanted. It may be 6 months or it may be a year. I don't care - I'll wait. It's my understanding that my 1861 device has a one percent malfunction rate and even a replacement has the same malfunction rate but at least if they tell me right away about the possibilty that it might malfunction - then I will make the decision of what is in my best interest - not some company. Best wishes to you. Marilyn M. Runner7891@juno.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.