The paperwork never ends The Archives
April 16-31, 2006 Archive Index

Jon 4-19     I'm baaaack
Cheryl C 4-20     helping others as you've helped me
Giorg 4-20     how can I avoid colds?
Jon's 4-20 reply to Giorg's 4-20     I hope others give some tips
Michele F 4-20     seek CRT experiences
Janice S 4-20     seek Toronto, Ontario CHF doctor recommendations
David Wilson 4-20     update, ICD recommended for my PVCs
Joyce W 4-20     seek generic carvedilol vs Coreg comments
Joy E 4-20     seek suggestions on filing for disability
Yvette W's 4-20 reply to Brian M's 4-10     checking into pacemaker option
Doug E 4-20     seek experiences with blood pressure swings
Tom S' 4-23 reply to Giorg's 4-20     avoiding colds
Bob M 4-23     maybe others can identify with this
Chuck F's 4-23 reply to Giorg's 4-20     avoiding colds
Tom S 4-23     a little device humor
William Murphy 4-23     seek VAD and Heartmate 2 experiences
Marty C's 4-23 reply to Cheryl C's 4-20     applying self-education is key to living better
Susan A 4-23     update, reassuring experience & reminder
Carol K 4-23     which lotions do you recommend for me?
Lori K's 4-26 reply to Giorg's 4-20     avoiding flu and colds
Lori K 4-26     torsemide (Demadex) versus furosemide (Lasix)
Penny M 4-26     could it be the Restoril? or my heart?
Tom S' 4-26 reply to Carol K's 4-23     lotions and other tips for oxygen users
Tom D 4-26     severe foot pain with CHF - seek ideas
Jack D's 4-26 reply to Giorg's 4-20     avoiding colds and flu
David Wilson 4-26     dual chamber pacemaker possibility
Jack D's 4-26 reply to Joyce W's 4-20     generic versus brand name drugs
Lowell P 4-26     can feet swell for other reasons?
Sandy N's 4-26 reply to Tom S' 4-23     my implanted device experience
Beckie H 4-26     disappointed in test results - questions
Norma W 4-26     seek opinions on body cleanse
Brandy M's 4-26 reply to Kathy M's 4-10     beware of working while on disability
Michele F 4-26     questions about test results, update, frustration
Tom S 4-26     will be having a TEE
Jon 4-29     delays explanation
Carol K's 4-29 reply to Tom S' 4-26     thank you for the information
Karen S 4-29     catch-22 type situation
Margaret D's 4-29 reply to Lowell P's 4-26     getting a physical is a good idea
Margaret D's 4-29 reply to Beckie H's 4-26     numbers versus how you feel
Tom S 4-29     thank you all
Sue H 4-29     bigeminy and PVC questions
Roger H's 4-29 reply to Cheryl C's 4-20     support group is a great idea
Scott Brown's 4-29 reply to Lori K's 4-26     keep us updated
Michele F's 4-29 reply to Tom D's 4-26     severe foot pain
Charles W 4-29     seek apnea with cardiomyopathy experiences
David Wilson 4-29     seek device implant experiences
Jayson T 4-29     seek alternative therapies
Penny M's 4-29 reply to Bob M's 4-23     considering a BiV pacemaker
Anil M 4-29     can doctors really predict life span?
Anil M 4-29     how long can a low-EF person live?
Linda S 4-29     question about enalapril maleate?
Paul R 4-29     trial on exercise and heart failure

Jon, April 19, 2006 - Hi everyone, Well, Our presentation was incredibly well received. When I say ours, I mean yours and mine, because I did indeed base 75% of it on your input and made that clear to the conference attendees. Two possible collaborative efforts, both major, are now potentially there for both you and me, involving the readers of Unfortunately, I can't discuss either until something official is set. Another two consultation projects are potentially available, which would in the end also require participation by you.
     I cannot thank you enough for your patience lately. I probably won't get posts up till tomorrow but thought I'd put the form up now so people could restart things round here. Very seriously, some of the suggestions and advice from you, I believe, made the presentation the success it was. Now, I'm pooped, so I'm off to pasture for the rest of the day. <g> Jon.

Cheryl C, April 20, 2006 - Hi everybody, Jon, I'm glad to hear that the presentation went well. That's probably good news for all of us. It seems that the doctors are really listening to us, and everyone can benefit from that. A couple of weeks ago I sent my cardiologist several pages of information listing all the web sites that I've found (this one topping the list!) that have useful health information, recipes, or products to buy. I thought that maybe someone else could benefit from my research without having to duplicate my efforts, plus some people would probably wouldn't even bother to look or may not have the resources to do it.
     I also sent him a cover letter stating that if a future HF patients support group was in the future in our area, that I would be willing to help with it. To my surprise I received a call from the doctor saying that he had already given the information to one of his patients and all the other cardiologists in the practice. Also, he and a new nurse practitioner were interested in starting a support group and would take me up on my offer to help. We have a meeting at the beginning of May to get started.
     I'm so grateful for all the information here on the web site and everyone's input to my many questions, that I feel the need to pass it on. I'm unfortunately still working full-time, but will devote any time that I can to help other people. I don't intend to ignore the need for help even though my EF is now testing "normal." I feel like I was led to this web site and all of you in my time of need and now it's time for me to stand up and return the favor.
     I've been exploring a few other avenues to help make a difference too, and will update everyone if they turn out. Anyone else who feels the need to help could maybe do as I've done and suggest a support group in his or her area and offer to help set it up. There have to be many people out there who have not found us yet.
     Every time I went in for an appointment, my doctor told me I was his best educated and compliant patient (thanks primarily to this web site!). I got to thinking that maybe more people would be compliant if they knew how to be. It's done me a world of good so far and no I have not cheated at all yet. I've been pizza (pepperoni) free for almost a year and it still hurts!
     We just returned from a long weekend trip to Austin, Texas to see our new granddaughter that my son and daughter-in-law just returned from China with. It was a hard trip for airplane flights and approved food, but I brought some food with me and did without a little too. All in all it was do-able and I managed without a need for diuretics (which I don't have). My biggest complaint was the uncomfortable airplane seats! What a beatiful baby - one more reason to live long! Best wishes for all! Cheryl C.

Giorg, April 20, 2006 - Welcome back Jon and hi everybody, I am writing because it is the fourth time in four months that I am at home with bad cold and cough. I cannot tolerate it anymore. Even when I can control the symptoms of DCM in some way (thanks to medications and life style), I have always some bugging disease like a cold that keep me out of my job. Before DCM I could work with cold and cough, now when I get something like this I have to rest at home al least four or five days. And I think my collegues do not understand how tough for me a cold can be.
     How can you avoid colds? How can you protect yourself from them? Maybe I should take multi-vitamins. But I already eat fruits and veggies, and I thought it was enough.

Jon's April 20 reply to Giorg's April 20, 2006 - Hi Giorg, I think most of us understand completely, but non-CHFers probably never will. Your number one defense is hand washing. I wash my hands more than anyone I know and I don't shake hands unless I have antiseptic waterless wipes in my pocket to clean my hands with afterward as soon as possible.
     My wife has helped and you could do this for yourself - use antiseptic cleaning wipes on all surfaces at your work stations since coworkers occasionally touch these things, about once a week so you don't take other people's germs home with you as often.
     I do recommend a multi-vitamin/multi-mineral tab at least once a day, preferably twice a day in addition to a smart diet. I would love to hear others' ideas from a selfish point of view - they might help me too! Jon.

Michele F, April 20, 2006 - Hi, My younger brother has been diagnosed with idiopathic dilated cardiomyopathy and he's only 34. He's now in Deborah Heart Hospital in New Jersey. He's had all the standard tests, (x-ray, echo, cardiac cath, blood tests) and now the doctors are talking about implanting a pacemaker (CRT). I'm looking for a little feedback regarding this procedure and some advice on heart failure in someone so young. I think this site is wonderful. Michele F.
Jon's note: This was my diagnosis at the age of 36 - twelve years ago. Can you give some of the test results? Meds might get the job done if given time. I wonder what his QRS interval is.

Janice S, April 20, 2006 - Hi Everyone, I spent last night in the emergency room with a diagnosis of mild (I have hypertensive DCM) CHF. I had had a 8 lb weight gain in 2 weeks and my activity tolerance was suddenly greatly reduced with increased SOB, lightheadedness, fatigue and nausea. I had a +ve hepatojugular reflex, reduced air entry in the base of my lungs but no real congestion, and elevated urea and creatinine. They gave me Lasix 80mg by IV. I didn't notice much effect (no output measuring done). They sent me home about 6 hours later. My meds were changed a bit (I was switched from hydrochlorothiazide 50mg daily to Lasix 40mg daily) but I'm still not feeling very well today. Does anyone know of a cardiologist with a specialty or special interest in DCM or CHF in the Toronto, Ontario, Canada area, who is also accepting new patients? Thanks, Janice S.

David Wilson, April 20, 2006 - Hi, I just wanted to post a line. I just got out of Club Med two days ago. This time it was a nasty gall bladder I had to have taken out and I had two nasty bacterias I am finally getting over. I thought the problem was my heart but it was not, but while in Club Med my doc did my stress test and an echo. I was throwing so many PVCs he reccommended I get an ICD implanted and I think I will.
     I have an appointment to see the heart surgeon next week. Maybe the ICD will help me live longer since God does not seem ready for me yet. I thought I was going to die last week and told God you know I am ready to go, I just have no fight left anymore. God did not take me so I guess He has something he still wants me to do in this life. I was throwing so many PVCs it took the docs awhile to figure out my heart was not the actual problem so maybe an ICD would help at least in diagnosing. My heart has not gotten any better but at least is not worse than last year, which is good. I hope everyone is doing okay. I am so glad the conference went well, maybe we all can get some more help from the docs.
Jon's note: I have never heard of PVCs as being a reason for an ICD. Are you sure they are really PVCs, and if so, so many of them would make an echo result pretty much useless. So maybe he is talking pacemaker and maybe you have undiagnosed heart problems still. I hate to be a downer but heart failure is often mistaken as gallbladder (it was in me and the gallbladder surgery sent me into class 4 heart failure) and without reliable echo results (which yours are not due to PVCs), perhaps a BNP blood test would be the way to go before even considering an implant.

Joyce W, April 20, 2006 - Hi, Is the generic drug carvedilol as effective as coreg? Coreg has so many side effects that it makes me feel like crap. However, it has worked wonders for my CHF - just messed up my life in terms of being able to do any physical activities. Any feedback will be appreciated.
Jon's note: There is an interesting thread on generic versus brand name drugs in general beginning at Toprol-XL is compared to Coreg in a lot of ways in another post at

Joy E, April 20, 2006 - Hello all, I am a 48 year old woman diagnosed with CHF in March of 2004. In April of 2004 I received a pacemaker and defibrillator. My very first EF reading was 13% but after the implants it got up to about 40%. Last August I had a bacterial kidney infection and became septic, landing me in ICU for a couple of days.
     Since then I have been feeling really drug out. fter an AP Optimization in January (EF back to 17%) I feel better, but not great. I am wondering about the process of filing for disability. I know nothing about the process, but I know I can no longer work a 40 hour work week. I just need some advice. If you have any thoughts please let me know.
     I am a born again Christian with a wonderful husband of 27 years and mother to a great 17 year old. I want to be around for them. Thanks.

Yvette W's April 20 reply to Brian M's April 10, 2006 - Hi, I just saw my doctor Tuesday and he is also setting me up to see a specialist about a pacemaker. He said people with EF less than 25% do better with it and usually see an improvement. We'll see what happens.

Doug E, April 20, 2006 - Hello, I know that CHFers, especially with DCM like me, have what is called BRS or baroreflex sensitivity, which means that the baroreceptors in your carotid arteries (primarily) are more sensitive. That means that blood pressure may fluctuate more than with a normal individual. This past week I have experienced a couple of wide fluctuations in pressure. One day it was 98/56 and two days later it was 128/76. The next day it settled back down to 112/62 and then a day later was back up to 126/76.
     Any thoughts or experiences? I am going to monitor over the weekend and if no change contact my EP on Monday. Also, it is not a malfunction in the monitor because we have checked it manually and with monitor. E-mails are okay.
Jon's note: I have had this ever since CHF but cannot name a definite cause. My CHF doc has not been concerned and has several theories but says none really can be proven and may not hold water. The human body is complex beyond belief.

Tom S' April 23 reply to Giorg's April 20, 2006 - Hi Giorg, This reminds me of an assignment I got from a news director in New Orleans "how to avoid dog bites" which I answered in two seconds, "avoid dogs!" Well, that didn't go over too well so we went and shot a lot of video of dogs at the pound - with a really, really, really, affectionate Doberman in particular - and laughed all the way through the assignment.
     Avoid people with colds would be the first answer, but I have found carrying a small spray bottle of alcohol and applying it to my hands when I touch surfaces in public baths and other areas may have kept me from having regular colds. I have had one bad cold in 12 years and prior to that I would get several a year.

Bob M, April 23, 2006 - Hi, I am curious and confused as well as being scared. My blood pressure remains high at 150/104. I have tried numerous ACE inhibitor and ARB meds and the higher the dose, the higher the pressure. I have a bad anxiety and depression problem dating back to my Marine days during the Vietnam era.
     My echo shows that my left ventricle is severely damaged and my MUGA shows my EF at 26%, I believe but my BNP is far lower than I thought. I am told I am in the beginning stages of class 3 CHF as my stamina is quite poor. I guess I am writing this to share with others my unique situation and maybe another out there can identify with it.

Chuck F's April 23 reply to Giorg's April 20, 2006 - Hi Giorg, In addition to handwashing (don't go to the point of damaging your skin or then you will be prone for more problems), vitamin C may be your next best friend. Take at least 500mg twice a day and when you feel a cold coming on, bump it up to 1000mg. Of course, run this by your doctor first. Research has shown your body can tolerate up to 1000mg a day for a short time if you have no other problems such as diabetes, kidney problems or gastrointestinal issues. I do very well with what I recommended. Again, run it by your doctors first as vitamin C does interact with some medications.

Tom S, April 23, 2006 - Hi all, It is my understanding that Medicare has approved paying for the Biventricular pacemaker/ICD and ICD implants, which seems to have opened the flood gates for cardiologists to push the procedure and device. It is also my understanding that anyone with an EF of 30% or less qualifies for at least the ICD. An echocardiogram is sufficient to determine the EF while a electrocardiogram is used to determine whether a standalone ICD or BiV pacer/ICD is to be implanted.
     I am such a mess that anything they throw in my body that may straighten out my Jabba the Hut-sized heart is okay by me. I must add that I have never had surgery and I am not thrilled by the prospect of this procedure and the aftermath. The cheery thing about this whole procedure is that you get to go through it all over again when the battery starts wearing out, which is supposed to be about six years.
     Now the only question I have is what if my wife or a loved one tries to off me by smothering me with a pillow, will the ICD keep shocking me back to life? Smile everyone! That was an effort at a little humor - very little.

William Murphy, April 23, 2006 - Hi, Has anyone had the Heartmate 2 implanted? If so, with any product, there are pros and cons. What do you find are some of the cons (the downside)? I have the opportunity of receiving one and am extremely interested in knowing the downside of the product.
     If you have one implanted and are willing to discuss the effects, I would call you if you leave a phone number by e-mail at which I could contact you. Thank you for your interest and help.

Marty C's April 23 reply to Cheryl C's April 20, 2006 - Hi Cheryl, I have to echo your comments about what I've gained from this site 100%! My doctor told me yesterday that I'm the most informed of all his HF patients. He went so far as to say that if he combined all their knowledge of this condition, it wouldn't equal mine. Wow. Now I have a big head to match the heart! <g> Or, could it be I just visit this site often?
     I think about what all of you are experiencing, couple it with Jon's hard-hitting commentary, and try to apply what I learn. I don't send a lot of money because I don't have a lot, but I do send something every month. The key to surviving as long as Jon has is not just to be educated about our illness, but applying the information to add longevity and quality to our lives. The rest is God. Marty.
Jon's note: Tell your doc if he wants more educated patients, he should make a donation!

Susan A, April 23, 2006 - Hi all, I have not posted for ages or read posts for a long while. Last I knew Jon, you were struggling with increased CHF symptoms and work issues. How goes it? I hope things have improved for you. The last three months have been a bear for me. Chemotherapy for breast cancer caused my DCM in 02/2004. My EF was 15% in 02/2004. I came home and discovered I could not even make the bed without being short of breath. Well, lots of prayer and lots of medication have helped me improve to the point where I was able to resume most of what I had done before.
     However, In 11/2005 I started having severe pain in my mid-spine, an ominous sign for a cancer survivor. We pushed through Christmas, determined to joyfully celebrate with family and friends, then started the testing on my spine. Testing revealed tumors in four areas of my spine. Three biopsies later, there is no conclusive evidence of cancer and the doctors think the lesions are benign hemangiomas. I still have lots of pain from the largest tumor, but I am thankful it is not a life-threatening situation.
     The spine problem triggered some type of virus or a flare of fibromyaligia, causing me widespread joint pain, lots of fatigue, and fevers. Consequently, I've been off work since 02-10-2006. Physically I am unable to resume working. I've applied for long term disability. Any feedback about how to handle this latest curve ball?
     Yikes, this is not where I thought I would be at the age of 44. Amazingly and thankfully, through all of this the DCM has been pretty stable with the exception of problems (fluid retention, SOB and fatigue) after my last surgical biopsy. What a long ride.
     Recently, my husband Kent and I were doing some spring cleaning. I had asked him to go through two boxes of papers and shred the items containing personal information and recycle the rest. When I checked in with him a couple hours later, I noticed he had pulled out a faded poster. I decided the poster was a keeper. The poster had a bible verse on it, "Trust in the Lord with all your heart and lean not on your own understanding." from Proverbs 3:5.
     Later that evening, Kent came to me with me with a piece of paper in hand and a surprised look. He explained to me that when he was carrying a box of papers out to the recycle bin, a small devotional booklet fell from the box. He went in the garage, came back to the book, and picked it up. He randomly opened it to a page and on that page there was a devotion centered around a bible verse. The Bible verse? "Trust in the Lord with all your heart and lean not on your own understanding." "Isn't that weird?" he asked me. I replied, "No, not weird. It's what my mom would call a glimpse of God's grace at work in our lives." The poster and the devotion have a special place of honor now, on our dart board, tacked to the bulls-eye.
     I wanted to share this with you all, because in the midst of so much uncertainty with CHF, DCM, or whatever your are faced with, there is much hope and comfort in trusting God and the many doctors and others who care for us. While we may not be where we ever thought we would be, we can trust our rides are not alone. We will journey and arrive safely, to the place we are meant to be. Well, enough preaching. I know this is long. Healing thoughts to all as you journey on, Susan.

Carol K, April 23, 2006 - Hi everyone, Can someone please tell me what lotions I can use. I am on oxygen 24/7. I have COPD and CHF and am not supposed to use oil. Thank you.

Lori K's April 26 reply to Giorg's April 20, 2006 - Hi Giorg, I too get a lot of colds. However, this year I wore gloves during the winter that were a lightweight cotton blend all the time I was out (grocery store, public places) and took them off when I got home. I also made sure to wash all my fruits and vegetables because if you watched how many people touch the same fruit, it starts to gross you out. I bought Veggie Wash for that. I also carry Purel-type products in my car all the time the rest of the year and wash my hands like crazy.
     Read the labels on the wipes you buy or sprays, some only kill bacteria not viruses. Try not to get too close to coworkers when they are obviously sick. A drug store mask - while not the most comfortable - is also good to wear to protect yourself during cold and flu season. We all want to live like normal people but sometimes the extra precautions are worth it. I hope you feel better soon! Lori.

Lori K, April 26, 2006 - Hi everyone, I just wanted to pass on an interesting comment by my CHF nurse practitioner about diuretics. Lasix did not work well for me but rather caused diarrhea. I lost no weight that way, but went on a 200mg sodium diet for 10 days and lost the weight (8 pounds). I went to Florida for a week and only gained 2 back and ate out every night (go figure).
     Now to the point, my CHF nurse said Lasix works well for those that retain fluid in the lungs and around the heart, Demadex works better on those with fluid in the belly and legs down. My belly and legs are where my water goes. Next time they want to try me on Demadex. Anyhow, has anyone heard any similar comments? Thanks again. Lori.

Penny M, April 26, 2006 - Hi, I am having severe fatigue accompanied with weakness, hypotension, and asthma. The asthma started after a month long bout with bronchitis back in December. I had hypotension late last Summer to the degree of needing a wheelchair (this lasted for several weeks and then I became mobile again).
     I have a pacemaker/defibrillator and see an electrophysiologist. My EF as of last year was around 30%. I'm taking Coreg at 6.5mg AM and 3.125mg PM, Cozaar at 50mg., digoxin, mexiletine, Azmacort, Zoloft, and Restoril.
     I saw my cardiologist last week and after he listened to my heart he said he didn't think it was my heart. I told him I disagree and he referred me to a heart failure specialist in their group and I have an appointment this Wednesday. The fatigue sets in after several days of normal physical activity (about 3 days), then my energy is completely zapped and it takes longer for my symptoms to improve with rest. I started taking Restoril for insomnia late last Fall, I'm on 30mg. Could the Restoril cause the increased fatigue or could the heart failure be worsening? I would appreciate any help. Thanks, Penny.

Tom S' April 26 reply to Carol K's April 23, 2006 - Hi, Last week I reviewed the dos and don'ts when using supplemental oxygen, which I have been doing for over a year. One of the do's to to use only water-based lotions. The respiratory therapist told me that in the even a spark sets off the enriched oxygen atmosphere, a water-based lotion will not ignite but there is a possibility an oil-based lotion would ignite. If you have it smeared on your face or hands I suppose that could be a real problem.
     You are also not supposed to have any open flames in the home such as gas logs, but pilot lights are okay. She said that if I had a gas stove I was not to use it while I had my oxygen on. Also, the use of alcohol as in rubbing alcohol, around oxygen was taboo because it is very flammable. I hope that helps a little bit I am sure others will share their knowledge on the subject.

Tom D, April 26, 2006 - Hi, I recently started dating a woman whose CHF was diagnosed shortly after we met. She is 37 and has had a really tough few months. Thanks to this site, I finally convinced her to get a CHF specialist (she has been at a military hospital) and he actually seems to be making good progress with her heart and lungs.
     However, the one thing that she is having the most trouble with is foot pain. Her pain is extreme and even hydromorphone is not relieving the pain that much. I would appreciate any ideas on how to treat the pain so I can pass them on to her. It's all very new to her, so she is dealing with the emotional part now as well, but the foot pain is a real hurdle for her. Please send info to me, Tom.

Jack D's April 26 reply to Giorg's April 20, 2006 - Hi Giorg, The only way to not catch colds and all those other pesky things is to avoid people completely. That's where they come from. If you can't avoid people then stay away from the petri dishes - public transportation (the very worst place on the planet for humans), elevators, malls, department stores (especially if there is some kind of sale going on because that brings out all the women with their sneezing, sniffling, coughing, dribbling children), schools, churches, cafeterias, and offices.
     Strangely enough, public restrooms are probably the safest places to visit in public because many people actually clean-up in them and you don't get a cold or the flu from planting your bare butt on a toilet. I'll reiterate - public transportation is the very worst place to be because it is crowded with all manner of unkempt, unwashed, unsanitary humanity and it is usually overly warm so the bugs just thrive. It is also the second most unsanitary spot in America. The number one most unsanitary place in America being the child seat in grocery carts.

David Wilson, April 26, 2006 - Hi all, I got a call from the heart surgeon and now they want to put in a dual chamber pacemaker in me. I read what you wrote on this and I guess it would help me some. I go to the heart surgeon today for a consultation. Maybe he can answer my questions - if it is helpful in the long run I will do it. I will ask about the BNP blood test. They ran lots of test so maybe they did one already. Is this a new thing they are offering people now. Before they never offered me any kind of help but meds. I guess maybe I qualify because my EF has been 30% or less for several years. I will let you know what the doc says after Wednesday.

Jack D's April 26 reply to Joyce W's April 20, 2006 - Hi all, Here we go again. Carvedilol is the actual chemical name of Coreg's main ingredient. This is the chemical formula for carvedilol, C24H26N2O4. When a drug is developed there is a chemical name for it but the big drug companies want everybody to acknowledge only them so they invent a name for their new drug. They invent a brand name and in this case the brand name is Coreg but when you look into it there is a chemical name and that name is carvedilol.
Jon's note: I'd still recommend that anyone interested in brand name versus generic drugs read the entire thread beginning at

Lowell P, April 26, 2006 - Hi Jon, My wife has experienced swelling in the feet and ankle area for yesrs when she is too warm or sits for extended periods. Recently while her feet were swollen I suggested she take a 40mg table of Lasix. The next day she had lost five pounds and the swelling was gone. Certainly a poorly performing heart can cause this but she has never been diagnosed with CHF and has no other symptoms. To your knowledge are there other causes for feet and ankle swelling? Lowell.
Jon's note: Yes, lots of them. She should start by getting a general physical exam.

Sandy N's April 26 reply to Tom S' April 23, 2006 - Yes Tom, Your ICD will zap but if you're not breathing, it will not be much help! I also have one and I want you to know, you should not be worried about getting the implant. This is usually a piece of cake. You'll be home in 23 hours and the incision did not hurt me at all. As far as "again in 5 years" that's not a problem for me because it's better than being dead. .. better than dead! My EF went from 12% to 48% after a year of the pacer/ICD and meds and my life style changes. I wish you luck and happiness in your journey!

Beckie H, April 26, 2006 - Hi, I just had my first Vo2max on the 14th and all I have been told is that I was a 17.4. The doctor is on vacation. I had an echo right after the Vo2max and it wasn't as good as my last two, showing a slight enlargement in left ventricle and right atrium, and for the first time mild pulmonary hypertension was mentioned. I have been on standard meds including Coreg at 25mg BID since 10/2004. My EF was up from 45 to 50% and every valve has mild regurgitation. I'm disappointed. Do you think doing the stress from the Vo2max and then having an echo right away could increase pulmonary pressures? My numbers were PASP = 35mm and RAP = 14mm. Thanks, Beckie.

Norma W, April 26, 2006 - Hello everyone, I am looking for some input. I am interested in what I have read of a total body cleanse. This is a two month regimen and is supposed to rid the body of all parasites. The program is 100% natural products and consists of a tea and capsules. It is not chelation therapy, which does not appeal to me at all. The brochure states that 60% of us have parasites that reside in all parts of the body and getting rid of them will build up the immune system.
     My problem with this is - will cleaning out the colon in a two month program have an effect on the absorption of my medications, both prescription and alternative? Has anyone tried this system from Natural Medicine Assocates of Hollywood, Florida? I will call the company for their opinion, but would much rather trust the word of a CHFer who has been there, done that. Norma W.

Brandy C's April 26 reply to Kathy M's April 10, 2006 - Hi Kathy, Be very careful working if you are on disability. I used the "Ticket to Work" program, was reassured by Social Security that everything would be smooth and fine as long as I turned in my pay stubs on time. They are supposed to only take half of what you made on your paycheck and allow for so much for this or that. Well it ended up that every month they took out $200 off the top and if I worked more than my normal 5 hours a week at $10 per hour, they took more. I was receiving letters that my SSD checks were going to be stopped because I earned too much to qualify even though i was very much below the amount allowed per their own booklet.
     I was in the SSA office weekly battling them to fix their goofups. Now, a year later I am still battling to get my checks back to normal even though I have become too ill to do anything again. If I was you, I would be very cautious about trusting the SSA. I was working for the state of California under a trial postion that was to only last one year. It was only 5 hours per week and it was also supposed to be an approved Ticket to Work employment for people on disability. I have not even told them I am too ill to work since December because I am terrified they will stop my SSD checks while they decide if I need to re-evaluateed again for disability, which is one of the possibilities when you do work on disability.
     So I continue to let them take $200 out of my monthly checks, even though I have not worked since December! Please be sure of everything before you begin working.

Michele F, April 26, 2006 - Thanks Jon, For your little note on my post of 4/20/2006. My brother is still in the hospital. He's now on Coumadin (warfarin) to thin his blood. The docs are waiting for his INR number to come up. This number measures the blood's ability to clot. It should be in the 2 to 3 range and he's currently at 1.07. He's getting very depressed because otherwise he feels fine. His cardiac cath showed an EF of 10% and the echo showed an EF of 20%. How can they be so different? I wasn't able to get his QRS interval yet. The docs say that a regimen of drugs may help him and a VRT pacer may be necessary in a couple of months. It's just so frustrating to see him in that hospital bed (now for 2 weeks). Does it ever get better?

Tom S, April 26, 2006 - Hi all, My heart specialists called and said they would be doing a transesophageal echocardiogram (TEE) before the BivICD implant this friday morning April 28, 2006. They want to check my heart for possible blood clots before they insert their devil zapper. It seems that the shocks they give me with the zapper can throw a clot and since I take Coumadin they want to be sure there are no clots in the heart.
     If you or your child is scheduled for this type of test, please follow these directions: No solid food for 6 hours before the test (milk and formula are considered solid food); Clear liquids like water, pop, clear broth can be given until 3 hours before the test but nothing to eat or drink during the three hours before the test.

Jon, April 29, 2006 - Hi everyone, I am sorry for all the posting delays in the past week. However, I now have completely new cable from the cable company (of course, they haven't buried it yet) and from now on I should have fewer cable modem problems. The old cable showed faulty readings in two areas, thus the new one instead of repair. Getting the cable company to actually fix something is like getting a mail-order pharmacy to correct a mistake - and we've all been there! <g> Then yesterday, some schmuck cut a main cable in St. Charles county, wiping out all cable for everyone in the area all day! Jon.

Carol K's April 29 reply to Tom S' April 26, 2006 - Thank you so very much, Tom. I didn't know what to use. Most lotions are oil first but now I can look for water as first ingredient. I was told as you said, that it is very dangerous to use any oil based lotion when it is listed as first ingredient. Thanks again.

Karen S, April 29, 2006 - Well, I have a good news-bad news type of thing going on. With an EF of 15% and being a breast cancer survivor, I was approved for SSD in record time. I applied on 01/31/2006 and was approved on 04/13/2006. I live in California and will be getting a tad over one thousand dollars a month, but my county medical will be stopped because I am not indigent any longer so I have to apply for Medi-Cal and was told there will be a share of cost involved. This is just a major Catch-22. Since I am single and on my own, I am not sure how to pay rent, bills and then share of cost on medical coverage and prescriptions. I think it may be easier to have no money at all! <lol> But, I guess it could be worse! I am thankful I did not have to fight with SSA. Karen.  P.S. Thanks for the info about ticket to work.

Margaret D's April 29 reply to Lowell P's April 26, 2006 - Hi Lowell, I understand that you want to help your wife as best as you can, but I caution you about giving anyone meds that are not ordered for them! Lasix can cause dehydration, low blood pressure, and electrolyte imbalance which can have serious consequences. Jon's idea of her getting a good physical is a great idea.

Margaret D's April 29 reply to Beckie H's April 26, 2006 - Truthfully Becky, a systolic pulmonary artery pressure reading of 35 would still be considered within normal limits by many doctors. It is my understanding that pulmonary pressures do rise some with exercise even in a normal person, and my pulmonary guy told me that he would be concerned with pressures over 45. I would not be concerned at this point but would ask them to follow up on a regular basis.
     An EF on echo also will vary up to 8% on a daily basis depending on operator or reader. I have had IDCM since June of 2002 and echos vary from one to another with right heart enlargement plus left on one echo, to normal sizes for the right on the next echo. My left heart got bigger for the first 2 years then smaller and is enlarging again! I pretty much ignore the numbers now.
     Mild regurgitation is also very common even in normal hearts. If it is moderate to severe then that it a problem. I think Jon does stress that what really matters is how we feel, so I hope you feel pretty good.

Tom S, April 29, 2006 - Hello and thanks to all who wrote to tell me about their BiV/ICD implant experiences. I deeply appreciate the time you took to recall your personal feelings and physical adaptation to the "devil zapper." Also a big thank you to Jon who has been providing this space so that folks like me can reach a world of wonderful people who make this forum the special place it is for all of us. Someday when I get out some of my personal financial burdens I hope to send a nice fat check to Jon to show my appreciation.
Jon's note: You get to feeling better and we'll call it even.

Sue H, April 29, 2006 - Hi there! Does anyone know what bigeminy is? My husband recently had an EKG and it showed bigeminy and regular PVCs. His doctor is going to talk to his cardiologist about this. Does anyone have any advice about this condition? Thank you.

Roger H's April 29 reply to Cheryl C's April 20, 2006 - Hi Cheryl, It is a great idea that you have of forming a group! I had talked with the cardiac rehab nurse a few weeks ago and then I stopped in yesterday, after my diabetes support group at the hospital and asked her if there was anything like that here. She replied no, but I'd be a good person to start it! I am not a leader but would truly be willing to help, cause I too work full time.
     I do know what you mean by returning the help to other people. I did say I'd talk with anyone interested that wanted to find out some info. My family doctor and the cardologist wish all their patients were as compliant as me. The best to you on the group! Jon, thanks so much for having this site!

Scott Brown's April 29 reply to Lori K's April 26, 2006 - Hi Lori, Please keep us in the loop about whether you have been successful in keeping colds and flus away with the surgical mask and antibacterials. I guess it would take a few years to prove whether this has been effective? I have two little kids so I catch everything going around around at the daycare. I am also interested to hear if avoiding cold/flu areas (like public transportion) has been successful.
     I suspect the casino is one of the worst places for bacteria - because it is a public spot - and everyone is pressing the same buttons and screens, and the age of the clientele tends to be older (more coughing, etc). Thanks, Scott B.

Michele F's April 29 reply to Tom D's April 26, 2006 - Hi Tom, My brother also is suffering from foot pain. It's only his left foot and for awhile, any kind of pressure on it hurts severely. The docs first thought he had a clot in his left leg (his other symptoms included coldness from the knee down and a blotchy look) but after a cath, it was found to be just a result of low blood flow, not a clot. That was two weeks ago and his color and temperature are okay in that foot now, but he still has pain. Good luck and post any suggestions or solutions you may find.

Charles W, April 29, 2006 - Hi everybody, Five years ago I was diagnosed with cardiomyopathy. I had a dilated heart and an irregular beat. My EF was 30% I underwent ablation and I haven't had a problem since. At least, not with an irregular heart beat.
     Two years ago, I began experiencing intense fatigue. Of course, I thought the problem was cardiac. My psychiatrist thought it was anxiety. My primary doc was perplexed. EKGs revealed nothing irregular. Four months ago an echo revealed my EF is 64% and my heart has returned to normal size - nothing else worrisome. Except I still felt rotten. Much worse than when my EF was low.
     I was sent to a sleep disorder clinic. Maybe that's why I experienced chronic fatigue. Yes, I have severe sleep apnea. Problem solved, right? No. I've been on CPAP therapy for the apnea (almost two months) and I still feel rotten, sooo tired, with shortness of breath. The sleep docs tell me that CPAP takes time. Okay.
     I take lisinopril, metoprolol, Effexor (for my insanity) and Protonix. Anybody out there lucky enough to have both CHF and apnea? Sometimes, the symtoms are similar and they do overlap. I suppose if I pester my cardio doc enough he'll put me in cardio for more tests just to shut me up. But I'm not imagining the way I felt. Any suggestions? Thanks.

David Wilson, April 29, 2006 - Hi, I saw the heart surgeon yesterday. I am having the dual chamber pacemaker put in June 6. The surgeon said he would help me as the chance of sudden death would be reduced. The surgery does not sound too bad. Anyone else who is having this done before, me let me know how it goes. I am hoping it will give me more energy and make me feel better.

Jayson T, April 29, 2006 - Hi, I'm new here, sorry if this is a dumb question. I am just wondering if anyone's had any real success controlling chronic heart disease without medications. I seem to respond well in other areas with amino acids and some herbal and vitamin products but I don't know how, if it's possible, to control CHD with alternative therapies. Any suggestions would be helpful.

Penny M's April 29 reply to Bob M's April 23, 2006 - Hi, I'm kinda in the same boat. I've been experiencing worsening heart failure symptoms such as fatigue, weakness, wooziness, hypotension, and my BNP came back a little over 100. I was surprised and didn't know what to make of it. I'm happy that it was this low, but surprised. My EF last August was 30%. I haven't had a MUGA or Vo2max test in about 8 years. I was told then I was on the edge of needing to be put on the transplant list. Around that time I was put on Coreg, Cozaar, digoxin, warfarin, and Mexiletine for arrhythmia. The medicines have kept me going without a doubt.
     I've had defibrillators since the 1980s and a pacemaker was added in the 1990s. My EF has been 30 to 35% for several years. My doctor suggests that we upgrade my device to a biventricular defibrillator/pacemaker. I'm scheduled for an echo next Tuesday. What was your BNP number and did your doctor say if you are in heart failure? My doctor said I'm not. I know my lungs are clear and I've never had the fluid/swelling problem. Thanks, Penny.
Jon's note: Have you had an EKG that indicates such a device would actually help you?

Anil M, April 29, 2006 - Hello, I had quadruple bypass surgery at the Cleveland Clinic in November of last year. I am 66 years old and was in reasonable health at the time of surgery other than having type 2 diabetes and high creatinine count. At that time the surgeon and the cardiologist both assured me that with the surgery my chances of survival would be at least 10 years even though my EF going in was 20%.
     Three months after the surgery, my EF had dropped to 10% instead of going up. But a week ago, another echocardiogram showed an EF of 20%. My new cardiologist says that I have only 50% chance of surviving one year and less than 5% for going beyond 5 years! What gives?
     Does he know what he is talking about? Are cardiologists able to predict and then share such figures? Needless to say, this has put a damper on my future plans. Any ideas?

Anil M, April 29, 2006 - Hi again, I am curious as what is the longest period a person with an EF of 10% has managed to survive in reasonable shape. Five years? Ten years? Does Jon have any information on this?

Linda S, April 29, 2006 - Hi everybody, I've been reading what all of you CHFers say on this board for a few months now, but this is my first post. I was diagnosed with DCM in March of 2005 and had a defibrillator/pacemaker with the biventricular leads implanted in December of 2005. So far my EF has increased from 24% to 30% and my heart size has decreased 2cm since the implant. Praise God! I'm doing pretty well under the circumstances.
     My question is about enalapril, the generic form of Vasotec. I had been buying it from a national chain drug store and my doctor suggested that I mail order it. I received it from CostcoOnline this week. However, the color and shape is not like what I had been taking. The new prescription has enalapril maleate and my other enalapril didn't have maleate. What is maleate? Has anyone taken enalapril from Costco and can I be assured that it is the same thing that I was taking? It's $30 a month less than what I was paying as my insurance doen't cover medicines. I would appreciate any info and or experience that you can provide. Thanks, Linda S.
Jon's note: It is the same thing.

Paul R, April 29, 2006 - Hi all, I'm involved in a clinical trial on exercise and congestive heart failure. I have cardiomyopathy, EF is up to 30% - it was around 20% - and I have a BiV pacemaker. If you have an EF under 35%, and have any interest in exercise, I strongly recommend looking into this. There are participating sites all over the country and in some foreign countries, where this program is being run. At worst, you'll get a thorough check-up and some advice on exercise. At best, you'll be randomized to the supervised exercise group like me. I exercise three times a week at the clinic. I'm going faster and further than I ever thought I would. If you're interested in this program, e-mail me.

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, 2006 Jon C.

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