Joy K's 7-1 reply to Debbie M's 6-29 oxygen and blood gas measurement
Peter S 7-1 seek info on external defibrillators
Giorg's 7-1 reply to Marie H's 6-30 you should talk to your cardiologist
Roger G's 7-1 reply to Andy P's 6-30 strange sleep experiences
Richard W's 7-1 reply to Andy P's 6-30 strange sleep experiences
Margaret D 7-3 diuretics and cholesterol
Julie C 7-3 trouble swallowing on ARB med
Debbie T's 7-3 reply to Debbie M's 6-29 mental difficulties with heart failure
Peter S' 7-3 reply to Jon's 7-1 external defibrillator units
Jon's 7-3 reply to Peter S' 7-3 external defibrillator units
Mary Ann H 7-3 serious weight loss - anyone else?
Helen L 7-3 seeking women's experiences with heart failure
Jim B's 7-3 reply to Roger G's 6-28 St. Jude implanted device, prayer request
Chuck F's 7-5 reply to Peter S' 7-1 ICD or external defibrillator
Karen K's 7-5 reply to Helen's 7-3 women living 10 years plus with heart failure
Bethany T's 7-5 reply to Mary Ann H's 7-3 thryoid function should be checked
Nancy S' 7-5 reply to Peter S' 7-1 and to Debbie M
Patricia P's 7-5 reply to Debbie T's 7-3 mental difficulty, losing train of thought
Patricia P's 7-5 reply to Helen L's 7-3 my experience with heart failure
Marty J 7-5 question on blood pressure vs heart rate
Lowell P 7-6 question on BNP remaining high
Susan L's 7-6 reply to Marie H's 6-30 and to Molly
Giorg 7-6 question - exercise (swimming), dizziness, and blood pressure
Debbie T 7-6 how should I approach new doc?
Jon's 7-6 reply to Debbie T's 7-6 answers to questions directed to me only
Donna V 7-6 experience with Guidant implanted device recall
Peter S' 7-7 reply to Chuck F's 7-5 external defibrillator questions
Maggie R's 7-7 reply to Helen L's 7-3 you should get a new doctor
Sam 7-7 anyone with IDCM in San Francisco?
Linda M's 7-7 reply to Helen L's 7-3 medical community is behind the times
Sandy N's 7-7 reply to Donna V's 7-6 Guidant ICD recall experience
Jerry B 7-7 seek CPAP experiences
Joy K's July 1 reply to Debbie M's June 29, 2005 - Hi Debbie, I am assuming your home unit for measuring oxygen is a plastic clip to the finger which in turn will show a number (a double digit) on a screen in a unit similar to a blood pressure machine. These are known as pulse oximetry units. They are useful and a less expensive way to measure oxygen status. They are wonderful little machines. However, it cannot give the whole picture in regard to respiratory status. They just give oxygen saturation level.
Measurements of oxygenation are a little more complex. A more objective and reliable method is having a blood sample taken from a radial, brachial or femoral artery. This is called aterial blood gas (Jon's note - this hurts like the dickens) and will indicate arterial blood oxygenation, gas exchange, alveolar ventilation and acid-base balance. Co2 retainers will have confusion. The question is, why is your spouse retaining CO2? Yes, if too much oxygen is given this can have a significant adverse effect.
Hemoglobin transports oxygen and our bodies can compensate for falling PO2 levels. For example, a PO2 level of 100mmHg hemoglobin - saturation level - would show 97% give or take. When PO2 falls to say 70, the saturation level might show 94%. However, once that PO2 level falls below 60mmHg saturation falls sharply and the percentage you see is 70 or less.
Once in this stage the ability of hemoglobin to transport oxygen is severely reduced. So a pulse oximetry might indicate 90% for a long time but if things are not what they should be and the PO2 levels are going down, you can be in some serious trouble. That is why blood gases are so important because they can show this measurement. If a blood gas has not been done I would certainly request it.
Yes, it is frustrating when tests results reveal normal values and yet people are not feeling or behaving normal. Sometimes I am not sure what normal is. I would keep asking and trying to get answers. Joy. email@example.com
Peter S, July 1, 2005 - Hi All, I am a borderline candidate for an ICD with an EF of 35 to 38% and a history of two heart attacks, but pretty much asymptomatic - a class 1 CHFer. My cardio (good guy) keeps pushing for the ICD or at least for me to take an EP test, and I keep resisting the invasiveness of it all, particularly since I am on all the right meds, my blood pressure is under control, I exercise regularly, and all the rest.
On the other hand, a part of my mind realizes that a defibrillator might be a life-saver. My question to Jon or anyone, why not an external defibrillator in the household (in the hands of a competent spouse) as at least a second-best? Jon, your site does not have much on the issue, nor does other research reveal much or any data. I do know that Philips Electronics offers a home variety for under $1700, along with a training video. PeterSperl@cs.com
Jon's note: The real question is, "How many minutes a day are you not in the actual physical presence of someone trained to locate and use the device?" The second question would be, "What are your risk factors for sudden cardiac death?"
Giorg's July 1 reply to Marie H's June 30, 2005 - Hi Marie, As far as I know, sudden swelling could be caused by either a marked lowering of blood pressure (due to medications) or some runs of arrhythmias. I suffer of it too, sometimes. Better check with your cardiologist. Take care. firstname.lastname@example.org
Roger G's July 1 reply to Andy P's June 30, 2005 - Hi Andy, Now that you bring this up it makes me think back to when I was taking Diovan and used to get up at night and cook entire meals in my sleep. Hmmm? I was also taking antidepressants and Ambien. I stopped the antidepressants and Ambien about the same time I switched from Diovan to Avapro. My personal opinion is that the strange stuff I did at night was caused by the Ambien. I was also falling unconscious and waking up on the floor. I think this was caused by the antidepressants since I have not gone unconscious since I stopped taking them. But then, I also switched from Diovan to Avapro at the same time.
If you think it is the Diovan, ask your doctor to change to something else. See what happens and then you will know. email@example.com
Richard W's July 1 reply to Andy P's June 30, 2005 - Hi Andy, I understand perfectly your symptoms. I wake up after nine hours of sleep - exhausted. I also suffer from dreams/nightmares, which are straight out of A Clockwork Orange. A few nights ago I watched my white dog dissolve into a tube of cotton, that sort of thing. Some of the dreams are highly sexual in content. I don't mind those nearly as much, though their content surprises even me.
I do not take Diavon, however. I do take lisinopril. I realize this will be of no help whatever, but that's my experience. In other words, it may be your new drug and well, maybe it's not. What is it? Well, duh. CClumbs3@aol.com
Margaret D, July 3, 2005 - Hi all, My cholesterol has gradually risen about 75 points in the last 3 years since I've been taking Lasix. I do not have coronary artery disease. I understand that Lasix can cause this rise, and was wondering if all diuretics do this. I know that you prefer Demadex, Jon. Does this also cause cholesterol to go up? I may ask the cardiologist about a switch. firstname.lastname@example.org
Jon's note: As far as I know (I could be wrong), only thiazide diuretics increase LDL cholesterol blood levels - Lasix and Demadex are not thiazides.
Julie C, July 3, 2005 - Hello, Can someone please help me? I am presently taking Micardis Plus (the ARB telmisartan plus a thiazide diuretic) for high blood pressure and have not been feeling myself since starting this medication. The main problem I am experiencing is that I am having trouble swallowing. This sensation comes and goes and happens when I am trying to eat. I feel that I am losing control of my throat muscles and cannot swallow. I am also feeling spaced out and tired. Can anyone out there let me know if they have experienced any side effects on this medication. Thank you. email@example.com
Jon's note: Stop taking this medication immediately and call your cardiologist. If you cannot reach him, go to a hospital emergency room. This could be angioedema, a potentially life threatening side effect.
Debbie T's July 3 reply to Debbie M's June 29, 2005 - Hi Debbie, Yes, I have the mind confusion as well with CHF. It got so bad that last Tuesday I ended up in the ER out of control. I have never been out of control before. I was crying and begging for help. I calmed down a bit when my husband came home but as soon as he let go of my hand and some in between I just screammed and cried. I just wanted to go to sleep.
I don't hear people but my worries and things that need to be done that I can't do anything about, at that point roll over and over in my head. The thoughts get jumbled and I can't think anything. This was a major event after many of the mind confusions you are talking about. I'd love to know as well if this has to do with heart failure. I start to walk to a room and can't remember why. I'm talking in midsentence and can't finish the thought even if the person repeats back to me what I said. All my docs say hmmm and nothing more. Is there a medical name or a medical doctor that can help us?
No, he is not alone. Give him all the support you can. He hates it worse than even you do. Deb. firstname.lastname@example.org
Jon's note: I have the same two specific problems you mention. In my own mind, I absolutely believe it is either heart failure or meds-related. Doctors blow it off but they are wrong to do so.
Peter S' July 3 reply to Jon's July 1, 2005 - Hi Jon, In responding to my general question on automatic external defibrillators (AEDs), you suggested correctly that one must take into account just how many minutes a day a CHFer is not in the presence of someone who can locate and use a home-based AED. Good point , but if even it is 12 hours, this still means there are 12 other hours of protection. My point being that for someone at high risk it is second best, but for borderline cases or those like me who are simply not comfortable chosing a permanent installed device for a variety of reasons, an AED is something to consider.
It is less likely to malfunction or create inappropriate zaps and if defects are later detected, can be corrected without surgery. No battery recharging medical visits are needed. As technology improves, the external choice is easier to update. There is no psychological stress and there is no possibility of infection. No surgery required in the installation. There is no major expense even if in some cases covered by insurance. If a patient improves, he or she is not stuck with the device for life. So my question again is, why is there so little medical literature or studies on the subject? PeterSperl@cs.com
Jon's July 3 reply to Peter S' July 3, 2005 - Hi Peter, I'm sorry but I believe this really is the primary reason for there being so many less AED than ICD studies. Sudden cardiac death strikes anywhere and anytime so as you say, an external defibrillator is a very distant second choice. Toss in that you must have someone who uses it properly on hand at the exact time an SCD event occurs, and it is a chancy proposition unless such units are available in many locations across a whole society.
This is not a matter of no money to be made because there is. However, until an organized and well-funded push is made to make these units idiot-proof to use and available pretty much everywhere, trials will be available but scarce. An external defibrillator vest is another possible choice. Jon.
Mary Ann H, July 3, 2005 - Hi everyone, My father is 88 and has had heart failure for many years but has just become more severe in the last year. In the past year he has experienced the nausea, loss of appetite, and funny taste in the mouth that seems common for heart failure patients from what I can see here. In the past 6 months though, he has been losing weight. At first the doctors didn't seem concerned, but now that it is still continuing and he lost 5 pounds in the past month they are getting concerned. Has anyone seen this happen with their loved ones? Any info would be appreciated. email@example.com
Helen L, July 3, 2005 - Hi, When I was last in hospital, the doctor told me you could not live long with heart failure - I started crying and the nurse said to me that at least you know when you are going to die. I was wondering if women have and can live more than 10 years with heart failure. This site is great but I was wondering are there any sites on the net specifically for women with heart failure. Helen. firstname.lastname@example.org
Jon's note: Your doctor is dangerously ignorant. Have you tried www.heart-help.net ?
Jim B's July 3 reply to Roger G's June 28, 2005 - Hi Roger, I got a St. Jude's device on June 10, 2005 and so far so good. It works well - hit me 3 times yesterday. I went to the emergency room where they consulted my doctors and changed my meds a little. It was scary but I'm still here. Prayers are appreciated. Jim. email@example.com
Chuck F's July 5 reply to Peter S' July 1, 2005 - Hi Peter, One very important thing to consider is the time factor involved with the AED. By the time you collapse from your irregular rhythm and someone realizes you are in need of the AED, even if that person is standing next to you with the AED, then opens the AED, unwraps the pads, applies them, etc,..., you are talking at least two minutes. The amount of time before your ICD responds to the same would be less than 15 seconds, depending on the settings.
For me, being a nurse and someone who has used the AED and also had it used on myself, the decision would be to have an ICD inserted. It only takes one bad arrhythmia to get you. Good luck. firstname.lastname@example.org
Karen K's July 5 reply to Helen's July 3, 2005 - Hello Helen, I am living proof that women can live longer than 10 years with heart failure. I was diagnosed in 1991. It is now 2005 and I'm still going somewhat like the Energizer bunny. The cardiologist I see who did my cath told my husband that I would start going downhill after one year and require a heart transplant within 5 years. Neither has happened.
Find a doctor you can relate well with and who you can trust. That nurse had no business saying what she said to you. That was totally unprofessional and uncalled for. E-mail me if you like. Take care. Karen. email@example.com
Bethany T's July 5 reply to Mary Ann H's July 3, 2005 - Hi, I don't know if this will help but maybe they should check his thyroid. My husband has had some weird symptoms, weight loss being one and then some more severe now. His thyroid has gone overactive due to his amiodarone use probably. So he is now scheduled for a thyroidectomy. We are hoping this will take care of his problems and it may be one avenue to check for your dad. firstname.lastname@example.org
Nancy S' July 5 reply to Peter S' July 1, 2005 - Hi Peter, I thought I remembered not too long ago that a lot of AEDs were recalled due to malfunction so I did a search and came up with this site: http://www.pharmacist.com/articles/h_ts_0800.cfm.
I don't know about the ICDs but for sure my biventricular pacemaker has made at least a 90% improvement in my life style. I was only 48 when I was diagnosed and was scared to death. I still worked 8 hours a day but by the time I got home, I would just fall into a dead sleep. I had no life and now I am back!
Sure, I still have some bad days when I'm tired but I don't think I've had any that have been as bad as before I got it. I really think if your doctor is recommending you get an ICD you should try to put your fears aside and do it. You may have a much more active life. Have you ever heard the saying, "Let go and let God"? That's what you need to do now. It's all in His hands anyway! The procedure is nothing to worry about. I stayed in the hospital overnight because I had to have a more invasive surgery than normal to get the third wire in but honestly the worst part was having to lie still and not move my shoulder for 12 hours. I know your fears are real but doing this may help those other, much more real fears go away.
Debbie M, I also have the inability to get out what I want to say at times and I forget things. Sometimes I get ready to say a certain word and it just leaves me. I get red in the face from embarrassment because I know the word and had it in my mind, and lost it. This is the hardest part for me. It makes me feel stupid and I know I'm not. My staff at work have just learned to laugh about it because they know I am not losing it, but sometimes I wonder. As someone else said, be as understanding as possible. My husband is always there for me no matter what, and I thank God for him every day! Nancy. email@example.com
Patricia P's July 5 reply to Debbie T's July 3, 2005 - Hi Debbie, You are not alone! I have problems remembering things also. I will start one thing and move onto another before completing the first thing. Before I know it, I have lots of things started and nothing completed. I also lose my train of thought in the middle of a sentence, and I know there is something that I want to say, but I can't get back to it. It is worse when I am tired. I have started making lists and I try to get lots of rest when I have to give a presentation or speak to a group. I try not to let it bother me, but it does. Hang in there. Patricia P. firstname.lastname@example.org
Patricia P's July 5 reply to Helen L's July 3, 2005 - Hi Helen, About a year after I was diagnosed, my EF started dropping and I went to several different cardiologists and kept getting worse. I was told by about 6 different doctors that I would never get better and that I would get continually worse. At first I just believed it, and was basically accepting the fact that I would not be here much longer.
Then one day I decided to fight back and found this site. I learned as much as I could, and was able to make informed decisions about my care. I also found a doctor that would listen. My meds were changed and I went from an EF of about 15% to an EF of 48%. The doctors were wrong! This is my fourth year with CHF. Patricia P. email@example.com
Marty J, July 5, 2005 - Hi, What does it mean when the heart rate is real low, like 48 to in the 50s, but the blood pressure has not dropped low as well? 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, 2005 Jon C.
Lowell P, July 6, 2005 - Hello, I went to the doc today and as has been the case for six months, my BNP is still high. It's over 900. The doc said he was encouraged by the data on my BUN being 30, down from 35 last time. My creatinine is down also from 1.8 to 1.3. My doc says considering I feel well and am not short of breath that it is difficult to know why my BNP stays high. Any suggestions about what could cause this?
He added 75mg Avaprol to my list of medications. I had difficulty with enalapril. I now take Lasix at 40mg once a day, Metolazoneat 2.5mg every other day, Coreg at 25mg twice daily, potassium and warfarin. Maybe I should just forget the numbers and accept the fact that I feel well. Any suggestions? Thanks, Lowell. Lpepper3m@aol.com
Jon's note: Have you considered paying to have your BNP tested at a different lab just to make sure the results are accurate? The improving kidney function is very good news!
Susan L's July 6 reply to Marie H's June 30, 2005 - Hi Marie, Regarding sudden bouts of perspiration, yes, I have them. First I get a nauseous feeling in my abdomen, then the hot flash. This has gotten worse since I turned 50 (ouch) so doctors attribute it to perimenopause but I have had these episodes for years. I don't know your age but I can certainly relate. I suspect our medication exacerbates the situation. I have been taking black cohosh (an herb) and it seems to lessen the intensity. You may want to try it but check with your doc. Good luck.
To Molly regarding your dad's EF, the issue really is more what is causing the low EF (valve leakage or ischemia, for example). Perhaps the key is that under exercise his heart may function better than at rest. May I quote excerpts from Jon and Dr. Gino's explanation of EF?
"EF is a rough measure of ventricular function but it tells nothing about where the blood goes! So in the case of valve problems, your heart is not functioning well because blood constantly flows back into the atrium. You may have a normal EF but not a healthy heart. EF is usually measured at rest. Some patients with atrial fibrillation may have a normal heart rate at rest but during exertion it really gets out of control. The same thing may happen with mitral valve insufficiency, due to high pressure in the heart's upper chambers (atriums). In short, how you feel is waaaay more important than what your EF is. EF is important, but by no means something to get obsessed with."
Good luck with your dad. I think that one of the best things you can do for him is to learn as much as you can about his condition. Jon's site is a wonderful resource. Thank you, Jon! email@example.com
Giorg, July 6, 2005 - Hi everyone, In the last week fot two times when I went to the swimming pool I experienced dizziness. That is kind of new to me. My blood pressure, as everyone's with non-ischemic DCM, is quite low at 105/60 but while exercising it usually goes up to around 120/80. When I got out from the swimming pool I tested my blood pressure and it was okay at 110/70 so if it was not for a decrease of blood pressure, what caused that dizziness? I am worried because it already happened two times. I tend to exclude arrhythmias because (unfortunately) I have a very good perception of them and on those occasions I did not notice them except the usual PVCs. Thank you. firstname.lastname@example.org
Debbie T, July 6, 2005 - Hi all, I am going to see a new cardiologist who also takes care of pacemaker/ICD. He will see me for everything to do with my heart. I just can't take the doctors arguing anymore that my heart problem is CHF (the ep doc says) and the CHF doc says its electrical so I'll see the EP doc. How should I start off with this doc?
I have all my records, I asked for copies from them. I don't want to tell the man his job but I think he should know that I want to know everything and be kept abreast and that I have done my homework too. Jon, when did they decide you needed the transplant? I mean, my doc said that is what will happen to me but didn't get parameters. What was the situation with your heart when you decided not to have the transplant? Do you regret it at all? Are you working now? Is it on again/off again with working?
I hope you had a wondrous Fourth of July - the fireworks just didn't look the same on tv. This is the first year I've missed the real ones. Take care. Debbie. email@example.com
Jon's July 6 reply to Debbie T's July 6, 2005 - Hi Debbie, It was probably around 1996 when my EF took a nose dive. My EF was extremely low at that time and so was my Vo2max score. No, I don't regret not having the transplant. I'm not working and don't believe that I physcially can due to frequent bouts of lightdeadedness and mental dullness. So it goes. Unfortunately, last month was our web site's slowest month this year on donations so we're kind of struggling round here. Jon.
Donna V, July 6, 2005 - Hi Jon, I don't know what happened to my earlier post about the Guidant recall. (Jon's note - It probably rolled over into The Archives) However, I went today to have the switch in question turned off. Mine is a Contak Renewal 3 (which appears nowhere on my device card), Model number H 175, installed in November of 2004. A friend alerted me to a possible problem as she'd read about it in the NY Times and wondered. My local paper had nothing. I went to Guidant's web site, called Guidant, my EP's office and local cardiologist last week.
When I went in today, my implant was reset to the off mode of the switch in question. It did disturb me that the PA was reading off of the same info I'd printed out from the Guidant web site. He knew what it meant and I did not. This PA is often more helpful and forthcoming than the doctors. When the problem was explained it made some sense but I cannot understand it all. As I left, I questioned my having to pay fo the visit. I'd just had the pacer check three weeks ago. I was told that if I incurred any out-of-pocket expense I would need to call and Guidant would pay for it.
The Contak Renewal 3 ( my model is H 175 ) is a class 2 recall, meaning it can be repaired externally. The class one might need a replacement and Guidant states that they will pay for it.
I also questioned why I had to hear about it from a friend who'd happened to read the NY Times on June 24. The first notice was issued June 17. As a result I checked the Guidant web site on the 26th and started calling on the 27th. Today I think I was the very first to go in for an adjustment. I love this BiV pacemaker and know it keeps me alive and doing more than before. I had my EF go from 5% to 20% in two months and I know it is better now after 7 months. I do not want to return the device.
However, thanks to you and the site, there is a need for all of us to be proactive in our care whether we have CHF specialists and /or EP surgeons. I continue to wonder when I'd have actually been notified of a problem with my device had my friend not read the NY Times for the first time in months? Maybe this will help someone. Thanks, Donna V. firstname.lastname@example.org
Jon's note: Guidant has expanded its recalls to include more devices so if anyone has any Guidant device, get it checked out!
Peter S' July 7 reply to Chuck F's July 5, 2005 - Hi Chuck, I took your comments very seriously and you make an excellent point that even if an AED were at hand it could take minutes to get the device organized for use. On the other hand, is it totally useless or does it have at least some value? Let me take a hospital example of a nurse who witnesses a collapse, recognizes it as a potentially fatal arrhythmia and calls for help. Isn't this situation (even given the professionalism of the people) still subject to delay? Unless there is a an AED in every room, which I doubt. Does this mean an AED has no potential value? Or for having them on airplanes?
I am glad we are getting some discussion on this subject. I am not promoting an AED as an equivalent to an ICD, but simply as something more helpful than not for someone who is not a slam dunk candidate for the implantable variety. Let me pose one more question: has anyone had their cardio even mention that technology such as an AED even exists? PeterSperl@cs.com
Maggie R's July 7 reply to Helen L's July 3, 2005 - Hi Helen, You need another doctor! It's been 3-1/2 years since I "died" of heart failure. My doctor always treats me like I'm his walking miracle and has never given me any indication that my life will be cut short. In fact, every time I see him, he says, "I have bad news for you, you only have 40 years left." I'm 66 now! At my last visit, when my EF went from 25% to 45%, he said that maybe I have 60 years to live. Of course, I don't always believe him, but I always walk out of there feeling a whole lot better! Maggie. email@example.com
Sam, July 7, 2005 - Hello, Are there any people living with idiopathic dilated cardiomyopathy in the San Francisco Bay area? It would be nice to have a small support group. Any interest? firstname.lastname@example.org
Linda M's July 7 reply to Helen L's July 3, 2005 - Hi Helen, I was diagnosed with congestive heart failure on October 6, 1997. I have had a couple of relapses since then. However, I teach college math full time, I go dancing, sail, travel, and walk 30 minutes a day. I am getting ready to walk a 5K in September, the AHA HeartWalk.
Keeping coming to this site. It will give you tremendous support and hope. We are living longer and better than ever before. If you hear something that doesn't sound right to you, check out the message board and The Manual. The prognosis for CHF is getting better and better. Some in the medical field just haven't kept up. Stay positive, and get the facts. Remember, attitude is about 90 percent of life. Good luck to you! email@example.com
Sandy N's July 7 reply to Donna V's July 6, 2005 - Hi Donna, I received a call from my doctor's office to come in (the very same day, two days ago) and have my Guidant H-175 reset. They turned off a switch as well. The Guidant rep, told me that Guidant would take care of any cost incurred. They explained that out of 46,000, 5 units malfunctioned with one person dying. This was said to be a 21 year old person who had a heart problem since birth. The Guidant site has information about recalls. It would be wise to keep the site in your favorites and have them send any news as it comes in. firstname.lastname@example.org
Jerry B, July 7, 2005 - Hi, I have had a decrease in my EF from 40 to 30% and a marked increase in my SOB with activity. My BNP was 586. I have been on digoxin (Lanoxin) and enalapril and my doctor is adding Coreg and Aldactone (spironolactone). He is also sending me for a sleep study at the request of my wife, who is a sleep tech. I'm a respiratory therapist so I am well aware of the benefits of CPAP for a variety of conditions. How many of you use CPAP for sleep apnea? Has it made a difference in your CHF? email@example.com
Jon, July 8, 2005 - Hi everybody, To see the situation with Guidant implanted device recalls, you can go to this web page on the FDA site: www.fda.gov/bbs/topics/NEWS/2005/NEW01198.html. Jon.
Chuck F's July 8 reply to Peter S' July 7, 2005 - Hello Peter, Don't get me wrong, the AED is an excellent device. Studies have shown that twice as many people are saved by the use of the AED over just CPR by itself. However, those with prior risk (aberrant arrhythmias, ischemic cardiomyopathy, heart failure, etc.) are at higher risk of death from an event. Therefore it is much more imperative that much quicker intervention occur. If a choice was no ICD and an AED be present, then by all means the AED would be the way to go.
To assist in making your decision I have provided you with two excerpts from a CME activity by the American Heart Association:
"The main finding of the study was that the use of AEDs doubled the rate of survival to hospital discharge. In the CPR-only group, 15 patients survived to hospital discharge, whereas 29 patients survived with the additional use of the AED. All but 2 patients (one in each respective group) were resuscitated in a public setting, such as a shopping mall or a recreational center. The other 2 patients were resuscitated in a residential setting, such as a large apartment building."
"The overall incidence of SCD is low in the adult population (1 to 2 per 1000 per year), so that it is difficult to have a positive impact on the rates of SCD in the general population beyond improving training in CPR and increasing dissemination of AEDs. On the other hand, patients with known, serious structural heart disease have a much higher incidence of SCD, and thus there has been great interest in risk stratification of such patients and investigating the use of implantable cardioverter defibrillators (ICDs) for its primary prevention."
Good luck. firstname.lastname@example.org
MaryAnn H, July 8, 2005 - Hello, Can anyone please tell me what ventricular ectopy is? Are there are words for that such as premature ventricular contractions. My son went to Cleveland Clinic for a follow up visit today and never saw that word before. He has PVCs and sometimes bigimeny. He had a good visit. His echo showed a 50% EF and left ventricular size went from 5.4 to 5.7 cm but the doctor said that is nothing to worry about. He said everything looked the same, which is good but then started talking about how you never know what the future holds. That ruined the whole visit. I know that is true but he never talked about that in length before to us. Any encouraging stories would be greatly appreciated. email@example.com
Tunny G's July 8 reply to Peter S' July 1, 2005 - Hi Peter, I had an ICD/pacer implant on May 10th. I was like you and didn't really know what I should do. After considering the why should I and why nots, with the help of God I decided to have the ICD/pacer implanted. It is now eight weeks or so later and I am so glad I did, mainly because it's an internal twenty-four hour work horse, always there on the job, and will work within 15 seconds when needed.
The surgery (first surgery in my life) was not nearly as bad as I thought it would be. The incision even at this early stage is already almost invisible. The ICD/pacer is placed in such a area (just below my left shoulder) that it does not interfere with anything I try to do. Possibly this is a mental thing, but I do feel much better now, maybe from having that extra security (if needed) making me feel better.
I looked at possibly purchasing an AED but ruled that out. If I had a problem with my wife asleep next to me, an AED would not help if she did not wake up or for reasons of several other similar examples. Peter, whatever you decide, I hope it to be the best for you. What we would do without Jon - I hope not to find that out. Thanks to you, Jon. God bless you. firstname.lastname@example.org
Sandy I's July 8 reply to Peter S' July 1, 2005 - Hello Peter, I am the spouse of a CHF patient. To expect me to be available at all times to use an external defibrillator is beyond comprehension. Get your ICD! :-) Sandy. email@example.com
Donna H's July 8 reply to Peter S' July 7, 2005 - Hi Peter, I have read with interest your comments about the external defibrillator versus an ICD. I may be a little prejudiced because my husband has an ICD and though it has never gone off, I feel better now that he has it as we are a long distance from a good hospital.
One point that I do want to bring up is the effect it might have on your family or friends if they had to use the external defibrillator and it was not successful. They would always feel that they should have done something differently. That is quite a burden. If your doctor thinks you need an ICD and you aren't sure, you need to find a doctor you trust more, or at least get a second opinion. firstname.lastname@example.org
Tom S' July 8 reply to Jerry B's July 7, 2005 - Ooooohhhh, I hate to comment on CPAP because I have had good and bad experiences with it. My wife has been on a CPAP machine for over a year and rarely makes it past 3 or 4:00 AM before she tears off the mask. The reason I know is that she wakes me up with her snoring so I know she has pulled the full face mask off. I try to get her to put it back on but I hate to wake her because she has to rise at 6:00 AM and then has a long commute - so every bit of sleep is vitally good, bad or indifferent. We really have noticed little or no difference but then again it could be because she can't keep the mask on all night. It does alleviate snoring, at least in her case.
My intro to the CPAP machine was something of a disaster. I was prescribed my $3000 wonder machine and it was simply delivered by a medical supply company. The representative didn't waste any time showing me a few basics, including how to use the "nasal pillows." I was taken aback when I saw the pillows and found them to be very annoying to use.
In the first place, my CPAP machine had been set at a nine and it felt like I was kicking reverse thrust jets into action when I put them on and turned the machine on. There was no problem clearing out the tear ducts with this things. I could literally feel the air being blown out my eyes and mouth, and in fact, I couldn't keep my mouth shut. I suffered from "cotton mouth" in a matter of a few minutes and my total CPAP experience with that machine lasted about 20 minutes. I haven't worn it since and that was over a year ago that I got it.
In February I had a crisis and was in the hospital for my nine day "Medicare vacation" and the docs mandated I use a CPAP machine every night. The big difference was a registered inhalation therapist would help me with a full face mask and they gave me an Ambien sleeping pill every night. I slept soundly and rarely had a problem with the mask, hardly even noticing it was on, but when I left the hospital I never returned to using mine. I do however use Ambien - ah, I love that drug. Snoooorrree, Snzzzlllee, ggglllloppppp, ggglllloppppp, ggglllloppppp. email@example.com
Richard W, July 8, 2005 - Hi everyone, I'm considering participating in an experimental project at a major university. It's sponsored by Impulse Dynamics and is called the OPTIMIZER System. It's an implant with minimum invasion. What I like about it is there's a hope (no guarantees, of course) that it promises to help CHF patients actually feel better. If I've learned anything from this forum, it's that almost everybody wants to feel better. Never mind accelerated EFs. How do we feel better?! Sometimes, I think docs don't understand that. Does anyone know anything about Impulse Dynamics and The OPTIMIZER? firstname.lastname@example.org
Jon's July 8 reply to Richard W's July 8, 2005 - Hi Richard, I read up on this last year. It uses a concept called CCM or Cardiac Contractility Modulation. It's sort of like pacing from a pacemaker but less complicated. I assume you're talking about their phase 2 trial called FIX-HF-5 (Fix Heart Failure 5). Everyone can read the eligibility requirements at www.clinicaltrials.gov/ct/show/NCT00112125. You can read a fairly simplified explanation of the idea at www.eplabdigest.com/eplab/displayArticle.cfm?articleID=article4285. The phase one trial included only class 3 patients not responding well to drug therapy. The current phase 2 trial has more relaxed requirements. I hope it helps. Jon.
Lowell P, July 9, 2005 - Hi Jon, I just read the post of the person with a BNP of 584 who was concerned about her condition. I would feel encouraged with a BNP like that. You suggested trying another lab for test results. I have had my BNP tested with the same results at three labs over the past six months with the same results. What in your opinion can cause BNP to stay so high given that I feel quite well and seem to be on all the right medications? My doctor assured me that I am not retaining fluid. What is the significance of BUN versus creatinine? My doc says that my decrease in BUN and creatinine was a good sign. Why? Thanks. Lowell. Lpepepr3m@aol.com
Jon's July 9 reply to Lowell P's July 9, 2005 - Hi Lowell, I don't know. Personally, I would check the results of all my tests and if the rest were good, I would be inclined not to worry about my BNP so much. I would ask for a thyroid function test, a BMP (basic metabolic panel), and a CBC (complete blood count). It's a good bet you've already had these. I have my CHF doc fax me the actual lab reports when he gets them and I check each result one by one. Toss in the trend of all your previous echo/cath results and see if BNP seems to be an anomaly. If so, talk to someone at Biosite Diagnostics (they make the Triage BNP blood test kit and are some very nice people). They may have heard of similar experiences and have some ideas.
You can read about BUN and creatinine at chfpatients.com/tests/routine_tests.htm. They are both measures of kidney function so if they get better, it's obviously a good thing. It might even indicate that blood flow to your kidneys is improved, which indirectly shows some kind of cardiovascular improvement despite an elevated BNP blood level. Jon.
Margaret D's July 9 reply to Tom S' July 8, 2005 - Hi Tom, and also Jerry B, I was dismayed to read of your CPAP experience. It sounds like you have severe sleep apnea. I recently went on CPAP myself for mild sleep apnea. I had been on oxygen for a year and a half, and dreaded the thought of CPAP. I actually find the apparatus more comfortable than the nasal cannula! I use the Breeze nasal pillows with 5 cm of pressure, which is a low pressure. However, there are many people who require pressures of 16 or over and can learn to deal with it.
My EF rose 10% in just 6 months on oxygen. The amount of strain placed on the heart in a normal person with sleep apnea is just huge. To place that strain on a heart damaged by cardiomyopathy is terrible! Blood pressure rises, serious arrhythmias may surface, brain damage from critically low oxygen levels can occur, irritability and foggy brain continue, etc.
If you did sleep well in the hospital with CPAP, why did you abandon it when you got home? As attitude is key to recovery/living with DCM, so is attitude extremely important in dealing with CPAP. I am determined to make it work for me. I will try anything I need to do to make it work. This would be just as important for you as a low sodium diet is.
I recommend the site called www.cpaptalk.com. That site is filled with people who have had every problem adapting to the CPAP like you and your wife have. If you try to keep an open mind, it can work! Also, I am surprised that the respiratory tech suggested you take Ambien. My sleep doctor, who is a pulmonologist, told me never to take it again. Respirations are depressed and you may think you sleep well, but the reality is that you aren't. Tom, please give it another chance! email@example.com
Jerry B's July 9 reply to Tom S' July 8, 2005 - Hi Tom, Thanks for your input. As a registered respiratory therapist (we havent been called inhalation therapists since the 1970s) I know that mask fit or pillows or whatever, is very important to a successful CPAP experjience. Your homecare company should have explained your machine in more detail. Almost all machines have a ramp feature that starts low and gradually increases to your setting. This allows you to get to sleep before the full force kicks in. I'm saying this in my professional mode - whether I have a better outcome as a patient, we'll have to see. Lots of people tolerate it just fine and lots don't. firstname.lastname@example.org
Anita C, July 9, 2005 - Hello all, I'm not sure why I hadn't found this site earlier, but I guess better late than never, right? I was diagnosed with PPCM after the birth of my third child in April of 2003. Doctors in my area gave Lasix, Coreg, and digoxin, and sent me home saying that was all they could do for me. After doing some research, I refused to believe that was it and determined to live to care for my kids. I found a doctor who referred me to Dr. Roger Winkle in Redwood City, California, USA. Within a week of my initial visit, an ICD was implanted to safeguard my life until more tests could be done and other options explored. Within 4 months, I was referred to the heart transplant program at Stanford University Medical Center. After only 3-1/2 months on the transplant list, I received my new heart 04/30/2005. I had a 3B rejection 3 days out. My transplant doctor did some amazing work in keeping me alive and saving my new heart.
I am now home in between two week doctor appointments and am doing well. I am adjusting to caring for my children again and it feels wonderful. For any women who has just been told they have PPCM, hold on to your faith. I know you are scared for your children and you wonder how this happened to you. It may be a hard road, but you are not alone and you can survive. I'm living proof. If you need a friend to remind you of that, you have my e-mail address. email@example.com
Roger G, July 9, 2005 - Hi all, Well, I had my ICD implanted Thursday. For those of you that are considering one, my procedure was a piece of cake. I simply slid over on the table and woke up later in my own hospital bed. Did it hurt? No. I had very little pain with the help of some pain pills. An overnight stay and then home the next day for me. It's been 48 hours now and there is no pain and no pain pills needed. The only real holdup is not being able to use my left arm for two weeks. I consider that a small trade to make for having a 24 hour a day watchdog protecting my life. What if it fails? Quite simple - the same as if I never had it implanted in the first place.
Best wishes to you all. Jon, thanks for having the site. I'll try to get another donation in to you next month. firstname.lastname@example.org
Norma W, July 9, 2005 - Hello everyone, As someone who has been helped both mentally and physically by reading this site, I was dejected when Jon had to shut down due to low finances. I wonder if we all recognize the amount of work that goes into maintaining this site or if we just take it for granted that Jon can continue unassisted. I realise many have sent donations, but are we all doing as much as we can? It must be so difficult for Jon to mention donations and he shouldn't have to, except to mention in the next week that he has received a flood of generosity! I will take my own advice and donate again this month. Won't those of you who can afford it do the same? Thank you. Norma W. email@example.com
Donna V's July 10 reply to Jon's July 8, 2005 - Hi Jon, Thanks for your post, link and reference to the Guidant recall information. I'm checking Guidant's site almost as often as I do yours. I talk with three others, met through your site, and we comapre notes on our biventricular pacemaker devices (class 2 recalls) and have all been checked and reset. We are feeling more comfortable about the whole thing now. I seldom post but I read and learn almost every day.
More for the information of other readers and potential contributors to this site than for you, I'll be sending another check to CHFpatients.com, Inc., soon. We all need to do this when and with what we can. Besides my tithe to my church I've chosen 3 non-profits a year to support with what I can. Now I have a fourth in your site and am more and more concerned about the free medical clinic in my town.
Things that once seemed important have faded into the background. Knowledge about this thing that affects us is what we need to know. I am slowly learning - thanks to you - that CHF/cardiomyopathy is not as an obscure illness as I was first led to believe, nor is it a death sentence in a prescribed (by doctors) in a specific time period. We can adjust and live with it and have real lives. Thanks again, Donna V. dmvditty@aol. com
Lowell P, July 10, 2005 - Hi, I agree with Norma completely. Jon provides a service you will not find anywhere else - not even from your doctor. It has helped me and many others understand some of our feelings and it lets me rest more comfortably with an understanding of what's happening. It's easy to get the benefit from this site without contributing to it, as long as we can remain annonymous. Jon needs our help. Let's help him. Lowell P. Lpepper3m@aol.com
Susan B's July 10 reply to Norma W's July 9, 2005 - Hello Norma, You hit the nail on the head, we the ones who benefit from Jon's hard work need to find more funding for it. However, I think that we need to do more. I have been thinking about how we could put together some more funds for Jon and this wonderful life-saving work that he is doing. I thought, why can't we do some sort of fund raiser? Is there something that we can each do in our cities on the same day to raise money?
My business has had to take a big cut in income because my husband has been so ill for the last 3 months, but I could still do something to help. I am commiting that I donate 10% of the profits of my firm to chfpatients.com. Before you get excited, I have not been doing very well and just barely making it because I have been off work too many days a week with my husband doing so poorly. I saw an ad from several other companies - not in my field - who were donating to causes that they believe are important. Well, I think that this is important. Therefore, starting this month, if I make a profit then 10% of it is coming here. I don't know if it will amount to anything or not, but my heart is telling me that this is the right thing to do. So I am taking a leap of faith and am going to do it.
My husband is lending me some money this week to advertise so maybe I will make a profit and be able to send you funds. Maybe other business owners will consider it too. What do you all think about different ways to increase the funds to support this site? Americans are very willing to give if they only know about the need. I meet 3 to 10 people a week that I tell about Jon's work and they are so happy to find it. I want to do more to help so that Jon can continue his work. Susan B. firstname.lastname@example.org
Jon's note: Have you managed to get your husband to his CHF doc for this downturn? His doc is back from that medical mission overseas now. I know your husband doesn't like going to the doctor but I also know you can get him there.
Jon, July 10, 2005 - Hi everyone, I appreciate the support expressed here. :-) Obviously, donations are what keeps both me and this site going. However, I want to make this perfectly clear - if you cannot afford to make a donation, don't! This site is here to make your life better, and giving money you really can't spare isn't going to help our purpose a bit.
Of course, if you can afford to donate, please do. <g> See chfpatients.com/about.htm Jon.
Peter S' July 10 reply to Roger G's July 9, 2005 - Hi Roger, I am sure everyone who read your report of the ICD implantation is happy that it went well and that you feel comfortable with your decision. If you are willing, it would be interesting to me to know what your particular situation was prior to the ICD recommendation (EF level, etc.) and whether this qualified you for Medicare or other insurance. Anyway, congratulations and good luck. PeterSperl@cs.com
Tom S' July 10 reply to Jerry B's July 9, 2005 - Hi Jerry, Hmmm lessee, I was an orderly in hospitals in the early 1960s and later did an OJT stint as a surgical technician, also called scrub nurse in the late 1960s so I guess the inhalation therapist title stuck with me.
I think somewhere in my post I failed to note I was familiar with the ramp feature of my machine and pretty familiar with most of it. However, the VA techs and doctors never made much of a point about the CPAP machine as part of my treatment. In fact, I have never been given another appointment by the VA's pulmonoligist since the first two meetings in which he prescribed the CPAP machine. Apparently that was the VA's gift du jour for veterans.
I think the only reason it worked in the hospital was because the machine was set lower at a 7 versus 9, and I had a face mask which I preferred along with the Ambien. Falling to sleep is very hard for me on a normal evening so CPAP proved problematic from the outset. Thanks for your input and I may drop my pulmonologist a letter checking to see if he plans a follow up anytime soon. email@example.com
Roger G, July 10, 2005 - Hi All, I come from a family that is prone to Restless Leg Syndrome (RLS). My grandmother, father, aunts, uncle and sister all have it but not me yet - knock on wood. I am wondering if any other CHFers out there have the same situation. Is it perhaps one of the meds we take that keeps us from getting the RLS? I take Coreg, Avapro, potassium and furosemide. If you have the same situation, please let me know. Folks with RLS live in a tortured world and if by chance one of our meds is effective in holding off RLS it would be a very wonderful blessing to them to know this. It would also be an added blessing to come from Jon's site if we managed to find a coincidence between RLS and CHF meds. Also, if you have RLS and CHF please drop me an e-mail or reply here on the board. Thanks much! firstname.lastname@example.org
Jon's July 10 reply to Roger G's July 10, 2005 - Hi Roger, I have a roaring case of RLS, and it stinks. I take a beta-blocker and ACE inhibitor, but only take a diuretic as needed (Demadex/torsemide). Jon.
Margaret D's July 11 reply to Roger G's July 10, 2005 - Hi Roger, I have had RLS for at least 30 years. My father, sisters, brother and one son have it also. It is no fun at all, let me tell you! There have been nights where I was awake all night with it. I am happy to hear that you have been spared so far and I would bet that you will not ever get it now. So in my case, the CHF drugs I take do nothing to help my RLS. Since many of us also have sleep issues like insomnia, which make RLS much worse, I fear that there is no connection.
I just recently started on Mirapex at night for the RLS and so far have not had any problems for a single minute! It is a miracle and I sure hope it continues. I am still working out the correct dosage since I apparently have periodic limb movements (PLMD) when asleep as well. Mirapex is given for Parkinson's disease but that class of drugs has been found to help RLS. Requip was just approved for use in RLS. I hope this helps. email@example.com
Jennifer G's July 11 reply to Roger G's July 10, 2005 - Hi Roger, I had RLS in a big way before I was diagnosed with cardiomyopathy and began medications for it. It's actually gotten better for me since I began taking Lanoxin first, then potassium, Lasix and Coreg. One thing that a friend and I both noticed however, is that the antidepressants Paxil and for her Prozac, gave us both a huge case of the fidgets from time to time, especially in the legs and feet. I know it was the Paxil because that exerience predates the heart meds. I don't know if you take an antidepressant, but I know many CHFers do. I hope that helps. Jennifer. firstname.lastname@example.org
Stephanie H's July 11 reply to Jon's July 10, 2005 - Hi Jon, Is RLS caused by CHF? It appears that many of us suffer from it. Stephanie. email@example.com
Jon's July 11 reply to Stephanie H's July 11, 2005 - Hi Stephanie, I don't know if RLS can be triggered by CHF in people prone to it or not. I do believe there is some relation between heart failure or heart failure meds and certain very common problems in CHFers. These include foot/lower leg pain, insomnia, RLS, and diarrhea (that last one is a side effect of Coreg in a lot of people). Remember too, that RLS can show up as foot and lower leg pain rather than the twitchiness that is so common with RLS. What the relation is between these problems and our CHF or CHF meds, I don't know. Jon.
Roger G's July 11 reply to Peter S' July 10, 2005 - Hi Peter, Thanks for your kind words. My specifics are IDCM and severe left ventricular enlargement. My EF range is 10 to 15%. Eight years in the sport, minimal ectopic beats. I passed the heart cath with no blockages and passed the EPS without a failure. In short, there is no reason that my heart is failing - but it is.
So to the real answer to your unasked question, why did I submit to having myself cut open and having an invasive device? Folks with CHF are prone to SCD, I am alone many hours each day even though I have a family, I don't believe that I only have a few years to live if I keep up the fight, my cardiologist and electrophysiologist are trusted protectors of my life even if I don't understand everything they say, and I have an eight year old son that needs me, I hope also a grandson, and two daughters. firstname.lastname@example.org
Stephanie H's July 11 reply to Richard W's July 8, 2005 - Hi Richard, I am currently participating in the Optimizer Study. My device was implanted in December of 2004. I am not sure which part of the study I am in. I know that all the participants actually had the device implanted and that it is a double-blinded study. The next round, not all the participants will have the device implanted. They will be followed for whatever period of time the protocol calls for but with only their meds and I guess compared to those who actually do have the device implanted.
I will find out Tuesday if my device has been turned on for the past six months or not. If it has been on, it will need to be replaced because this older model that I have, the batteries only last for six months. The new model batteries are rechargeable and last for 38 years. If the device has not been on for the last six months, it will be turned on Tuesday. I go to the test site every 4 weeks for a check-up with the Impulse dynamics tech, who tests the device to ensure that it's working (that can be somewhat uncomfortable since he turns the juice up and you can definitely feel it! I believe that the new trial does not require testing every 4 weeks, I think it's something like every 8 or 12 weeks.
Every 12 weeks, I have to go through an echo, pulmonary stress test, 6 minute walk, and a holter monitor. At first I thought that my device was turned on because I thought I actually felt it delivering the therapy, and I felt somewhat better. However, over the past three months I have been feeling like garbage. Anyway, I do know that Impulse Dynamics has had good results in Europe with the device.
The implantation itself is very similar to an ICD (which I also have). There are, I believe, three leads to the heart. They make a pocket in your chest to put the device. My implant was done as an outpatient. I was in the hospital for 23 hours. You will have limited mobility for 3 to 4 weeks, but basically it is a very quick and easy recovery.
I would definitely talk it over with your doc, and make sure you want to sign up for a year. Good luck! You can e-mail me directly if you want. Stephanie. email@example.com
Rose, July 11, 2005 - Hi, Has anyone had alcohol ablation done or do you have any information about it? firstname.lastname@example.org
Jennifer G, July 11, 2005 - Hi, I posted a question a couple of weeks ago but I never saw it show up, so I thought I'd give it another try. I have a question about treatment for cardiomyopathy that is concerning me. I had one episode in the hospital recently that showed me just how bad I could feel if I didn't get proactive about treating my heart problem. What the doctors thought was bronchitis, then pneumonia in both lungs, turned out to be pulmonary edema. I also have had irregular heartbeats with unknown cause for most of my life, so that compounded the situtation.
During and after my hospital stay, I was skipping every third beat. I was already on Lanoxin and a diuretic. From my hospital stay I was put on Diovan, potassium and Coreg. My BNP was measured and came out to 350, which my doctor tells me puts me right on the fence between "having it and not having it."
I want to do all I can to preserve the heart muscle function I have. My husband and I have chosen to adopt rather than having a baby, and I put myself on a low-sodium diet, even though my cardiologist didn't. My main concern is that he hasn't prescribed an ACE Inhibitor. With Coreg alone (6.25 mg twice per day), my blood pressure is usually around 90/60 to 100/70. With my cardiologist's approval, I went off Diovan in an effort to raise the dose of Coreg. My next appointment is next week, so I will find out then if Coreg can be increased. Could it be that my blood pressure is just too low?
If an ACE Inhibitor is the first line of treatment for CHF, should I be treated with that instead of Coreg? I asked my cardiologist, but he seems to be a good doctor who gets edgy if I start asking questions about my treatment. He says I can feel free to ask any questions, but his actions are that he thinks I don't trust his decisions. So if you or others here could shed some light on whether or not I should be taking an ACE Inhibitor and Coreg, I'd love to hear it. Thanks much and thanks for all of your efforts on this site. Jennifer. email@example.com
Jon's July 11 reply to Jennifer G's July 11, 2005 - Hi Jennifer, The way I've felt lately, I wouldn't be surprised if I lost a post or two. Please consider your good-to-date opinion of your doctor. Note that he had you on a diuretic without a potassium supplement yet he added a potassium supplement while you were in the hospital and you had irregular heart rate throughout. That's a condition that can be caused and is often aggravated by skewed potassium level. Skewed potassium level is often caused by taking a diuretic without adequate blood potassium level monitoring.
Also note that a good doctor does not get "edgy" when his treatment is questioned - especially after saying you can ask him all the questions you want. This has a scent of either defensiveness or arrogance to me, and either one is bad in a person upon whom you depend. Further, BNP over 70 indicates possible heart failure - a result of 350 indicates near-certain class 2 heart failure in a woman - he got this one dangerously wrong.
Finally, he didn't put you on a low sodium diet. This is not in line with the guidelines. Think it over and consider getting a heart failure specialist. (Can you imagine how confident my own doc must be not to let me get to him? <g>)
With low blood pressure (100 over 70 is just about perfect for a CHFer though), usually a beta-blocker is brought up to target dose before adding an ACE inhibitor because it's harder to reach beta-blocker target dose with low blood pressure so the ACE inhibitor is added next, before spironolactone or Inspra. Your current course is understandable. Bear in mind that my own treatment has forced my blood pressure to unreadably low levels in the past but my CHF doc and I agreed that it was for the best short-term, so it's a case-by-case call. Jon.
Jane G, July 11, 2005 - Hi everyone, Drug companies tend to avoid giving this information: Can 50mg eplerenone (Inspra) pills be halved to make an affordable dose for the elderly? Jane.Graham@med.va.gov
Jon's note: I don't know why not. The pill's shape will work with a standard pill cutter but 25 mg is usually only the dose for the first 4 weeks.
Susan B's July 11 reply to Jon's July 10, 2005 - Thanks for asking, Jon. We are going to the different doctors (including his CHF doctor) up to 3 days a week. My husband George, has been in a-fib since March. George was cardioverted as soon as his CHF doctor came back in town. In less than 2 weeks later, he was back in a-fib and we were sitting at KU again. George's blood work showed that it was this thyroid driving his heart with heart beats over 100 to 120 per minute at rest. We went back weekly to get the heart beat down. He has added so many meds to keep his heart beat down for now. He is having blood work done every 2 weeks to get the thyroid levels to normal. He had another attempt to cardiovert in May but he did not even stay in for 2 beats.
George went to get his handicapped parking sticker Friday. He cannot do much. He is hoping to have a "shocking good time" being cardioverted in the near future but based on his blood work last week it looks like that day will be months down the road. We are trying to keep up his sprirts. He is weaker every day. We are getting a second opinon on his thyroid treatment. He is having problems with his fingers turning blue and being very cold.
He had another sleep study because he is gasping from breath in his sleep even on his breathing machine. Please don't think that we have been taking this lightly, we have been fighting every step of the way. The hardest part for me is the sudden change - all of this after the first of this year he was doing so well that we were considering him going back out in the field and fighting fires again. Now he is fighting for his breath. Who would have believed this? His CHF doctor was saying that George might be able to cut back his visits to once a year because George was doing so well. Take care, Susan B. firstname.lastname@example.org
Jon's note: I know you take it very seriously but I also know how stubborn George can be. At least the thyroid problem was caught - a lot of doctors never even consider this.
Jon's July 11 reply to Rose's July 11, 2005 - Hello Rose, I tried to send you information by e-mail but your address bounced. Please send a usable e-mail address. Thanks, Jon.
Debbie T, July 12, 2005 - Hi everyone, I need to share this info on dizziness. I went to a brand new cardiologist today and part of his exam was he took my blood pressure lying down, sitting up, then about three times while standing still in front of the table. My blood pressure at rest was 100/60 and dropped 20 points when I stood up and that was standing up slowly. It remained low during my standing time. He is also trying to get cardiac rehab for me, which I've never done. My prior cardiologist said to walk when I could and then it would be a transplant or death after that.
Has anyone else had blood pressure be higher when at rest than when upright? Also, does anyone have any input on how cardiac rehab helped or did not help them? I just hope insurance will cover it since that's the only way it can happen. I wish you extra smiles and sunshine! Thanks and take care, Debbie. email@example.com
Ben B's July 12 reply to Ben B's July 11, 2005 - Hi Roger, Did your electrophysiologist recommend the ICD even though you passed the EPS with flying colors? I'm wondering why they even had you take an EPS if it didn't figure in the decision. I took an EPS and passed, and didn't have the ICD put in. That wsa seven years ago. I know the EPS is not a definitive test, but did they tell you why they put one in even though you passed it? At that time, my EF was around 25% and it is now up to 45%. Obviously, all CHFers don't need an ICD. I know there is more statistical benefit to ICDs for people with lower EFs (and existing arrythmias, of course). Of course, best of luck to you. I know it is reassuring to have the protection. firstname.lastname@example.org
Mary D, July 12, 2005 - Well, I got my answer from SSD on Saturday. They said I don't qualify for disability. My EF is 25% and they acknowledged that I can't "lift, carry, climb, stoop, kneel, crouch and crawl." They also said they agreed that I can't be in situations that are extremely hot or humid, and that I can't be around machinery or work in high places. My question (rhetorical of course) is, "What's left?"
I can't work in an office filing, because you have to stoop, carry, bend, kneel, crouch, etc. I can't work as a cashier because you have to still do all those things with groceries. They actually told me I could get a chair to sit at while ringing up customers. I told her when was the last time you were in a Winn-Dixie or Walmart and saw the cashier sitting on a stool? It was then they told me that I could do telemarketing. I get out of breath just talking to SSD people on the phone.
Soooo, it's off to get an attorney to do this for me. Are we having fun yet? email@example.com
Karen K, July 12, 2005 - Hi All, I just want to share with you what I consider to be good news following my appointment prior to having eye surgery on the 28th. I had an IVG done. It's my first one for at least 5 years. The last 5 years have been extremely stressful for me (daughter diagnosed with cancer, daughter divorced, and going through my own divorce that took over a year to obtain and another year before my husband was put in a position where he had to admit hiding money from me). One of my biggesst concerns during all this is what the stress might do to my heart.
The results of my IVG today indicated an EF of 40%. The doctor said in 1991 (when I was first diagnosed) it was 19%. It then rose to 38% and dropped a bit to 32%. Today's results were 40%, which given the plus/minus 8% factor with echo, he said it's likely where it was 5 years ago. Looking at it more optimistically, maybe it's actually 48%. Who knows? I thank God for my good fortune.
I'm pretty much asymptomatic. I'm only seen every six months at the heart failure clinic although I have 24/7 access to a nurse who works with my doctor. Regarding the surgery, he said they'll monitor me pretty much as they would anyone. If there are any out-of-the-ordinary symptoms following surgery, they'll likely put me in the hospital overnight. He told me I could do a small "jig." Karen. firstname.lastname@example.org
Jon, July 14, 2005 - Hi everyone, I'll be catching up on posts and e-mail today, sorry. Raging insomnia laid me out night before last so yesterday I was flat on my back imbibing large doses of Howlin Wolf, Canned Heat, etc. I must be getting old. <g> Jon.
Margaret D's July 14 reply to Debbie T's July 12, 2005 - Hi Debbie, Yes, it is common for blood pressure to fall when we stand up. That's why many of us get dizzy when we stand up too fast. Usually I would think it was an ACE inhibitor (or beta-blocker) that causes it. I would say that was a good doctor to go to all that trouble. Checking a standing pressure is also a way for them to check compliance with our drugs. Lots of people that have just high blood pressure don't take their meds as directed, sometimes because of the side effects. So when the standing blood pressure is checked and it doesn't go down some, it's a good bet they aren't taking their meds! email@example.com
Jacky B's July 14 reply to Debbie T's July 12, 2005 - Hi Debbie, I understand that blood pressure is always higher lying down than when standing up. The odd time I have had extremely high blood pressure in the docs' office they have me stand up and take it again. I think it goes lying - sitting - standing, higher to lower. I don't know where this leaves normal! firstname.lastname@example.org
Peter S' July 14 reply to Ben B's July 12, 2005 - Hi Ben, Your comment to Roger G was most interesting regarding the cardiologist recommending an ICD in spite of passing the EP test - in other words, why take the test? My own cardio is pushing the same approach: Take the EP test but whatever the result, have an ICD implanted.
Roger did explain that that his EF was low, so it is perhaps not fair to compare his situation to others (such as myself) that are borderline candidates. What is difficult for me to sort out, and perhaps for others, is how patient-specific is a doctor's advice compared to putting himself on record in case of a subsequent lawsuit? I have had two highly competent cardiologists advising me and can assure you that neither has explained the risks of an implanted ICD, nor even mentioned that an external device was available even as a distant second-best therapy.
One reason I resist the EP test is that it is invasive (a device threaded into your heart) and deadly in its intention, that is to electrically attempt to stimulate your heart into fatal arrhythmia and then "correct" the problem. PeterSperl@cs.com
Giorg's July 14 reply to Ben B's July 12, 2005 - Hi Ben, More then 3 years ago I passed an EPS but my cardiologist reccomended I get an ICD anyway and I went for it. I have to say thank to my cardiologist because my ICD has been stopping lots of V-tach. I do not really know how I could even get out of my place alone, without my ICD. Even with that, I am scared about arrhythmias.
My cardiologist understood that even if my EF was 35% and there was no evidence of sustained arrhythmias, my DCM might bring arrhythmias later, and so it happened. Anyway, in my opinion, it is always better having an ICD not needing it, than not having it while needing it. email@example.com
Roger G's July 14 reply to Ben B's July 12, 2005 - Hi Ben, I think the only answers I can give you are that the EPS was because I had awakened on the floor a few times and we really didn't know why I was falling unconscious. This has not happened in awhile but it could have been due to my heart. The ICD is somewhat like the seatbelt and airbag in your car. You hope to never use them but you sure are glad they were there if you need them. I am glad to hear that you are doing a little better. firstname.lastname@example.org
Debbie T's July 14 reply to Mary D's July 12, 2005 - Hi Mary, Is this the first or second appeal? If they say you can't do any of those things, what is their answer? I'm in the first appeal process and have two doctors writing letters to go with it. Do you think that would help? Just having an EF less than 30% is on the the already accepted disabilities list, I believe so I thought it would be cut and dried. Maybe call the office and ask what else they need. What state are you in? I'm in Virginia and am planning to file my appeal at the end of the week. Maybe we can help each other with thoughts? Write me here or to my e-mail. There must be a way around this. Take care. Debbie. email@example.com
Donna H's July 14 reply to Roger G's July 10, 2005 - Hello, I have wondered about the correlation between heart failure, restless leg syndrome and sleep apnea. That trio seems to affect so many that it surely has some common denominator. When my husband was diagnosed with RLS, he was given quinine. That seemed to help and he was later weaned off it and the RLS seems to have gone away, though it is hard to really tell because we have been so concerned with his heart failure the last couple of years.
On another note, yesterday we went and had my husband's Guidant ICD reset. The technician said there would be a new software upgrade in September that would also be helpful. While the technician was making adjustments to the pacemaker and ICD, my husband mentioned to her that he was feeling a little slow and draggy with his bottom number set at 60 so she consulted with the doctor and turned it up to 70. He is feeling much more energetic now and doesn't wear out quite so easily. He keeps trying to talk them into putting a knob on the outside he can adjust but they just won't go for that!
We didn't need the added expense of another doctor visit, with 40 dollars for gas and I have to miss a day of work, but I sleep better knowing that his ICD will work if he needs it. We are thankful for every day and still amazed how much better he feels this year, because we know how quickly it can change. firstname.lastname@example.org
Greyson D, July 14, 2005 - Hi everyone, My mother (age 68) is a heart failure patient since 1997, at which time she was treated with a tiny amount of metropolol, Captopril, digoxin, and furosemide - all without too many side effects. She recently had a minor stroke and a new cardiologist switched her to Coreg (once a day at 3.125 mg), Altace, and furosemide. She recently changed to Diovan (40 mg) from Altace. Her chief complaint is knee pain, swollen legs, and most of all - a constant itch. Can Coreg cause the itch? Is Toprol-XL an effective substitute for it? Any other suggestions would be appreciated. email@example.com
Jon's note: I don't know and hope others reply but please note that Coreg should never be taken just once a day - it spikes blood levels of the drug up and down and the body never gets used to it, causing much more obvious side effects and stressing the heart.
Joyce S, July 14, 2005 - Hi everyone, Can anyone recommend a heart failure specialist or doctor in Columbus, Ohio? Thanks. firstname.lastname@example.org
Dan S, July 14, 2005 - Hello, I would like to know if anyone out there in the Marysville, Ohio area can suggest a new doctor. My wife and I are moving and I will need a new doctor. I have CHF with other factors. I will be seeking a CHF doctor and a good primary care doctor. Thank you. Dan S. DLS50@webtv.net
Ben B's July 14 reply to Roger G's July 14, 2005 - Hi Roger, Not to beat a dead horse, but to clarify my post about EPS and ICD, I am aware that there are some other reasons for taking an EPS. For example, it can tell if a person might benefit from an ablation or cardioversion, it can tell exactly where arrhythmias are being generated and perhaps give some information for tuning an ICD, if there is such a thing. In other words, it is a comprehensive exam of the electrical workings of the heart.
If, as in the case of Roger, a person had a history of syncope episodes I would certainly see the benefit in the ICD regardless of the EPS, and would just sort of take the word of the electrophysiologist that the EPS was necessary.
The thing that really perplexes me is that in over seven years of reading this web site, I think I am the only person I have read about who had a negative EPS and didn't have the ICD recommended anyway. So needless to say, it was a little scary to me for awhile. It is almost like, if they figure you need an EPS they immediately figure you need an ICD, for everyone except me. In my case, I have a lot of PVCs and used to have a lot of unsustained V-tach. At the time of my EPS in 1998 my EF was 15 to 20%, and they still didn't recommend it. At that time there was a lot of talk about me dying from various heart related things by all my doctors (5 years to live and assorted nonsense).
Since that time my EF has risen to 45% and somehow, possibly due to Coreg, my V-tach episodes have gone way down, although I still have some PVCs. So like a lot of medical things, it is a bit of a mystery to me but I know they wouldn't recommend it now. email@example.com
Scott B's July 14 reply to Ben B's July 12, 2005 - Hi Folks, It's been awhile since I saw my cardiologist, and I finally had a consultation last week. I did the treadmill and apparently ended up better than average for my age (got up to 20 degree incline, 5 miles per hour, 16 minutes). I was upset I couldn't go further but they said it was pretty good (just over 15 METS).
The echo apparently showed a slight enlargement of my heart over the previous echo from 1-1/2 years ago. My EF has improved slightly over the past 3 or 4 years from approximately 23 to approximately 30%. I have felt pretty good. My cardiologist mentioned some recent studies with EFs of 30 and less. There are two groups - the ones who slowly decline and the ones who function at a relatively high level. The group on the decline are more predictable than the group who is seemingly doing well.
My cardiologist is booking me for a MUGA in 6 months. If my EF is still on 30% or there is more enlargement of the heart, he is going to refer me for an ICD implant. At the age of 35, this is not where I hoped to be. However, I have a family now and would like to live. It seems like I don't have much to lose, so I am likely to go for it. I'm not sure I got the explanation 100% correct, but that was the bottom line that I took away from the meeting.
Are there any fitness limitations I need to worry about with an ICD? I love to play recreational badminton several times a week. Thanks, Scott Brown in Ontario, Canada. firstname.lastname@example.org
Tom S, July 14, 2005 - Hello, I have a mild cardiomyopathy that is probably HIV-induced, according to the doctors. I have had 2 echocardiograms, the last being one year ago. It showed abnormal results at rest, with a normal stress echo result. I have a normal-sized left ventricle with mild global hypokinesia (EF estimated 45 to 50%). The EF was an improvement over the first stress echo I got in 2001, which was 35 to 40%.
I have been taking the ACE inhibitor enalapril for a couple of years and now my doc wants me to take Coreg. I take trizivir and nevirapine for HIV and mirtazipine and wellbutrin for depression (no surprise being depressed considering my situation). I really do not want to take any more drugs. I do not seem to have any symptoms of CHF. Is Coreg really important to take, especially if I am already taking an ACE inhibitor? email@example.com
Karen K, July 15, 2005 - Hello Everyone, I am on a quest! Given the results of my recent MUGA, I thought perhaps it would be time to add additional alternative therapies to my mix. I currently take Lasix at 40mg (MWRSun), spironolactone at 12.5mg (TThSSun), Lanoxin at 0.025mg daily, Coreg at 25mg twice a day, and benzapril at 40mg daily. I also take 200mg of CoQ10, calcium at 500mg a day, DHEA at 25mg daily, and one capsule of fish oil daily. Does anyone have a recommendation as to what I might first add to the above that would be the most beneficial?
Also, Jon, regarding my report on my MUGA, is the plus/minus 8 points only on an echo as opposed to a MUGA? Karen. firstname.lastname@example.org
Jon's July 15 reply to Karen K's July 15, 2005 - Hi Karen, I would suggest L-arginine first, at fairly high doses. See chfpatients.com/stew/nutrients.htm. Unless you take a statin, at this point in your CHF "career" I'm not certain how much benefit CoQ10 can give you. See chfpatients.com/stew/coq10.htm.
MUGA is more accurate than echo for measuring LVEF because it actually counts red blood cells. I'd put it at an error of roughly +/-2%, with cath about the same or slightly more accurate. Keep in mind that not all echo "modes" are equally accurate. For example, a recent study concluded that for figuring EF from echos, the error for different methods was:
Eyeballing EF (the usual way an experienced CHF doc does it and a good method) - error of 7%
AV Plane Displacement - error of 2%
Biplane Simpson - error of 11.6%
I doubt that these hold true across all medical centers, hardware and software, but it gives you an idea of just how much echo is an estimate, rather than a precise measuring tool for EF. Jon.
Brenda K, July 15, 2005 - Hi Everyone, I am new to this site and to CHF, and I have some questions. I was diagnosed with CAD 2 years ago and had 2 stents put in and angioplasty. Everything seemed to be going well until recently, when I had more blockages and had a third stent added. This time, along with the heart cath, the doc did an intravenous ultrasound (IVUS). They found diastolic dysfunction, hypertrophic cardiomyopathy, and the nurse in the hospital said CHF. He also told me to go on a low sodium diet and that my regular cardiologist would put me on a diuretic. They changed my meds, increased my Toprol-XL and added Norvasc.
My regular cardiologist did not put me on a diuretic and says I don't have CHF. He did an echo and it came back okay (don't have any numbers). I had a second heart cath 2 weeks later (was still having some problems with shortness of breath) and the docs are now saying that while I still have the diastolic dysfunction and hypertrophic cardiomyopathy, it has improved with medication and the stents are working well.
I told my regular doc this and he steadfastly holds that I don't have these things or CHF. Now I am confused. I went ahead and scheduled an appointment with another cardiologist who specializes in CHF to get it checked out. I'm sorry to go on for so long, but this is frustrating. How do you know who to believe? email@example.com
Jon's July 15 reply to Brenda K's July 15, 2005 - Hi Brenda, This is an enormously frustrating situation for sure. You have taken the absolute best first step to getting reliable information - another medical opinion this time from a heart failure specialist. Keep in mind that there are also a few cardiologists and clinics across the USA that specialize in hypertrophic cardiomyopathy - see www.4hcm.org/WCMS/index.php?id=48,0,0,1,0,0. True hypertrophic cardiomyopathy does not respond as well as other kinds of CHF to treatment so it is important to be certain you actually have it, especially since people who don't have it are sometimes mistakenly told that they do. True HCM includes an abnormal alignment of muscle cells - not just thickening of the heart's wall(s), so without expert testing, it can be pretty easily misdiagnosed.
Get that other opinion. Also - and I cannot overstress this - get a copy of all your medical records and test results from all your doctors so you know what they are putting in your chart, not just what they are telling you! I trust my CHF doc and I still get copies of everything. It's necessary if you want to retain both understanding and control of your medical care.
One good thing about the doc who diagnosed you with CHF is that he recognized that calcium channel blockers can be used to treat HCM and he prescribed the absolutely only proper one - amlodipine (Norvasc), since if he's wrong and your CHF is not from HCM, Norvasc won't hurt you. Other drugs in the same class will. Hang in there! Jon.
Marty T's July 15 reply to Scott B's July 14, 2005 - Hi Scott, I've had my ICD for a year. At age 44, I am also very active, with a 35% EF, LBBB and some lousy anxiety issues. I was freaked about exercise limitations with the ICD, contacted Medtronic myself (learned that from Jon) and they told me racquetball was okay but I should take it easy. I hit myself once in the ICD with the racquet and dented it (I didn't say I was great at racquetball) and all that got me was additional zaps to test it again, and it was fine.
There is a healthy skepticism discussed on the posts here about when/if to get an ICD. The bottom line is that if you are at increased risk for SCD, there is no substitute for the security an ICD provides. It's like somebody following you around 24/7, watching every move your heart makes. Then, if it misbehaves, they whack it with a baseball bat to get it back in line! Many people's lives have been extended with this little friend and in my case, it changed very little in my life except the odd little bulge on my chest. Marty. firstname.lastname@example.org
Roger G's July 15 reply to Brenda K's July 15, 2005 - Hi Brenda, Perhaps your regular cardiologist is drawing a fine line on the CHF terminology. What I am saying is that while I do have cardiomyopathy, I am not currently in congestive heart failure. I have told nurses at the ER that I have CHF and they corrected me to say I have cardiomyopathy with a history of CHF. I think another way of saying this is that we get cardiomyopathy, go into congestive failure as a result, then with therapy we come out of congestive heart failure but still have cardiomyopathy. This may be a question to ask your regular cardiologist. Make him explain until you understand. email@example.com
Jon's note: I think she also said the doctor told her he doesn't think she has diastolic dysfunction or cardiomyopathy either although I could have read it wrong.
Giorg, July 15, 2005 - Hi, I found out the reason of my recent dizziness. It was caused by a "junctional rythm" that I have been experiencing over the last days. Has anyone else experienced that? My cardiologist says it is nothing to worry about and that it goes with my DCM but this is new to me! My cardiologist suggested to reduce beta-blocker (sotalol) and see how it goes. We will see. firstname.lastname@example.org
Pat L, July 15, 2005 - Hi Jon and everyone, I had a question about Toprol-XL and went to the CHFpatients search machine and found most of the info I wanted. There is a mention that Astra Zeneca's patent would run out in 2004 and then there would be the possibility of a generic? Is there now a generic for Toprol-XL? Thanks Jon, for all you do. I have learned more from this site than from doctors, nurses or physician's assistants.
I have been doing very well. It has been 4-1/2 years with my biventricular pacemaker, which has made a huge impact on the quality of my life. I was in the Insync study and my device was on from the beginning. I will have a colonoscopy in August, initially to be done in the outpatient suite at the gastro guy's offices. I am checking with the EP guy who said a colonoscopy must be done in the hospital with a Medtronic rep there. In the event the gastro wants to cauterize any polyps, with the electric cauterizer, something protective has to be done to the biventricular device, probably shut it off to avoid a spark (my guess only). Thanks again, Pat L, diagnosed with CHF 3/12/1995 and still going strong! email@example.com