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

Linda K 11-16     how much sodium in a pickle?
Tony M's 11-16 reply to Jon's 11-12     used CPAPs and dental appliances for apnea
Jon's 11-16 reply to Tony M's 11-16     used CPAPs and dental appliances for apnea
Mary C's 11-16 reply to Jon's 11-12     dental appliances for apnea
Marty C's 11-16 reply to Jon's 11-12     dental appliances for apnea
Mary C's 11-16 reply to Tom S' 11-15     thanks for your post
Scott B's 11-16 reply to Tom S' 11-15     I agree, but everyone is different
Doug H's 11-17 reply to Lori A's 10-29     different types of event monitors
Jon R 11-17     flu and Hep B vaccination questions
James H's 11-17 reply to Tom S' 11-15     this site really helps
Lauren A 11-18     seek bad reactions to flu shots
Peter S 11-18     seek advice on good weight scales for body weighing
Peter S 11-18     seek specifics on heart enlargement numbers
David W's 11-18 reply to Jon R's 11-17     flu shots, working with heart failure, update
Lowell P 11-18     LBBB and anticoagulants question
Ernest W 11-18     any advice on coping with CHF emotionally?
Sandy N's 11-20 reply to Ernest W's 11-18     coping with CHF emotionally
Bill H's 11-20 reply to Ernest W's 11-18     coping with CHF emotionally
Scott B's 11-20 reply to Peter S' 11-18     buying a weight scale for body weight
Tony M 11-20     seek CPAP experiences
Jack S' 11-21 reply to Tony M's 11-20     CPAP sleep experience
Mary C's 11-21 reply to Tony M's 11-20     CPAP sleep experience
Laurie N 11-21     seek others with CHF and MS
Brenda T 11-22     what CoQ10 is best?
Joseph A 11-23     incorrect ICD setting damage - anyone else?
Nancy S' 11-23 reply to Jon R's 11-17     and to Lowell P
Evelyn G 11-23     questions about docs and water softeners
Barb N 11-23     CPAP web site and more
Jon 11-23     revisiting my CPAP situation, please
Jon 11-27     sorry about the delay but so it goes
Sharon S' 11-27 reply to Brenda T's 11-13     vacation, altitude and more
Debbie B's 11-27 reply to Evelyn G's 11-23     water softeners
Bev T 11-27     Byetta questions
Ann D 11-27     does anyone else have a "stiff heart?"
William J 11-27     seek others with pulmonary hypertension
Val L's 11-27 reply to Brenda T's 11-22     I worry about mercury
Kelley M 11-27     seeking info for my boyfriend with CHF
Mary C's 11-29 reply to William J's 11-27     some more info
Verna L's 11-29 reply to William J's 11-27     pulmonary hypertension experience
Mary C's 11-29 reply to Ann D's 11-27     be a strong advocate for yourself
Jennifer M 11-29     really need some advice and support
Jacky B 11-29     what will CRT really do for me?
Barb N's 11-29 reply to Bev T's 11-27     Byetta experience and resources
Ann L's 11-29 reply to Kelley M's 11-27     low sodium diet is a must

Linda K, November 16, 2006 - Hello all, Something a little different today. I have a science question for you. Linda has three pickling cucumbers. She quarters them and puts them into a brine containing one teaspoon of salt. How much sodium will there be in each pickle, and how much will remain in the brine? How on earth does Vlasic figure it out?
Jon's note: Only way to figure it out is to lab test random pickle samples for sodium content.

Tony M's November 16 reply to Jon's November 12, 2006 - Hi Jon, Last year while waiting 6 months to get in a sleep clinic for testing, my wife, who's a registered dental hygentist had me a mouth piece made like you're talking about. It works like you said: The mouth opens up slightly and your tongue drops down and you can breathe better. I used mine until I got into a sleep study that took 6 months for me to get into and the doctor let me put it in after sleeping 4 hours with a CPAP because he wanted to see what the mouth piece did versus the CPAP and possibly use my wife's office to make them for some of his patients who travel.
     It did keep me from snoring but I still had some apnea because my tongue was too large and was still in the way by pushing into my lower bottom teeth. On the good side I can use it in a pinch while traveling to keep the snoring down but it's not a remedy for apnea. My wife does have patients who love their mouth pieces and probably have more room in their mouth than I do but mine was only $200 not $500. I just looked over the Internet and you can find used refurbished CPAPs for about what you're going to pay for the mouth piece and I would go that route and not get a mouth piece if your funds are limited.
     I found a couple for $350 and some for double that but make sure you get a vaporizor with whatever you buy or your nose will dry out and bleed. I also know a person in my town who sells CPAPs and I will see what I can get a used one for and maybe he will cut me a deal and let me have a mask too. You need to have a sleep study with the numbers so they can set the machine to you and you probably already have a sleep study so that wouldn't be hard.
     I was surprised at how many places sell used ones and refurbished ones really cheap compared to new ones. The hose and mask is the only thing that you will need to buy new and other than having it calibrated, which is easy, I would try getting a used one because the mouth piece didn't work as well for me. Plus with a CPAP you're getting forced air into your nasal system and it really opens you up and lets you sleep great. I hope this helps and maybe you can get a good deal on a CPAP. Tony M.

Jon's November 16 reply to Tony M's November 16, 2006 - Hi Tony, Usually the first mouthpiece costs about 200 dollars but it's a temp until the one more closely fitted to your own mouth is done, usually a couple of weeks later. That one is what costs the 500 dollars. My tongue is also too large for my mouth (maybe that's why I got a better wife than I deserve), according to my sleep doc, who is board certified. He said the mouth piece would not entirely stop my snoring but would definitely help my apnea. I will be discussing it at length with the dentist before going ahead with it, since I see some potential problems, including paying for all the adjustments down the road.
     Unfortunately, I would have to pay for another sleep study to set the CPAP and pay out of pocket for all follow-up visits since they would be due to a non-approved therapy per my health insurer. It adds up to more than I can afford any way you look at it. I also require a nasal type canula since they couldn't get proper numbers with a mask on the first sleep study. Thanks for you offer, though, it's very thoughtful! Jon.

Mary C's November 16 reply to Jon's November 12, 2006 - Hi Jon, Really research this. It can lead to TMJ. I have a myofacial injury, so I can't use this option. I wish users of the board could all chip in and buy you one. A sleep medicine doctor might be able to sell you a rental or a used one. Have you looked on ebay? My sleep medicine doctor adjusts mine even if I didn't get it from him.
Jon's note: I actually used a mouth piece to correct TMJ so I recognize the risk and will discuss it with the dentist. For various reasons, I don't buy anything from or e-bay, though.

Marty C's November 16 reply to Jon's November 12, 2006 - Hi Jon, I have sleep apnea and I tried the mandibular device and hated it, really hated it! Of course everyone's different, but I think it's a case of getting what you pay for and the CPAP machine has by far been a better option for me. Don't you think the stakes are too high here to go with the cheapest option? I mean, we're talking about something that could have a huge HUGE impact on your quality of life! There must be payment options for the machines, since all the HMOs rent them for patients anyway, then you own it after a year or so. Get some numbers, and let all of us here who care about you to do what we can to help you. I know there are others like me who would find a way to assist you with making the payments.
     Also, since you usually get to keep the machine when you go to a newer one, there's a chance someone on this board has an old machine they'd be willing to send to you. I'm going to check with a few members of my family who went from the CPAP to the BiPap, and see if I can locate a machine for you. Just my two cents worth, my friend. God bless. Marty.
Jon's note: Hi Marty, See my reply to Tony. I contribute about 6000 dollars a year to our family income because that's what I clear running this site. It's not about cheap - it's about what is possible. Basic math, is all. My wife's car has 200,000 miles on it so in January we must add a car payment to our budget and that about does it for us financially.

Mary C's November 16 reply to Tom S' November 15, 2006 - Thanks Tom, You have a big heart. May we learn from your wisdom that you gather from being in the trenches.

Scott B's November 16 reply to Tom S' November 15, 2006 - Hi Tom, I agree with the spirit of your post. I've had an EF of around 29% for about 5 years now. I have children who are one and 3 years old. I appear to be relatively stable and I am still able to work a full-time job, with the responsibities of a full-time job. I exercise regularly and I do not miss it. Am I fatigued regularly? Indeed! I have a rewarding life, and I am not convinced relaxation is the key for everyone.
     I use common sense. If I have trouble breathing, I stop the activity. If I get chest pain, I relax. If I get dizzy, I don't bend over. So far, so good. I think it would be a mistake to advise that people should stop working a full-time job if they feel they can handle it. I personally feel the activity is beneficial to me. Take care, Scott B.

Doug H's November 17 reply to Lori A's October 29, 2006 - Hi Lori, There is more than one type of event monitor. I used to work in a cardiovascular lab so I can tell you which I prefer. The first has the typical patches that the lab tech initially places on you and then shows you how to place when you change them out. The monitor does not "go off" unless you tell it to record. If you notice what you think may be an event, you push a button and it records the event. After 3 event recordings you pick up the phone dial an 800 number and transmit the events over the phone.
     The second type, which most patients prefer but most labs don't stock as it is more costly, is like a tazer. When you notice an event you press it to your chest and it records the event. After a couple of recordings you phone in the events. Each has its drawbacks; The tazer is easier to use but you may miss part of an event in the time it takes you to press it to your chest.
     The other type is monitoring all the time but not recording. When you press the button to record it starts at a time point 60 seconds before you pressed the button and records for 90 seconds after. This is the one I prefer because of the back recording feature.
     Daily we would review the events that had been phoned in. If we spotted a potentially threatening arrhythmia, we sent the report to the doctor. Most would be quick to notify the patient and explain what they wanted them to do. Otherwise the patient isn't typically contacted but, should have been told up front no news is good news. I hope this helps.
Jon's note: Just to clarify, the third type is always recording but only saves tha previous 60 seconds when an event occurs. Otherwise, it records over th "old" data it has recorded. It is my preference.

Jon R, November 17, 2006 - Hi all, I have recently been reading a lot of arguments against the flu shot because of some toxic ingredients like mercury. I was wondering if anyone has any thoughts on this topic. My cardiologist says I have to get a flu shot every year. My question is: How vital is it that we get our flu shots? I have to make a decision quickly since flu season is here. I have already been vaccinated for pneumonia and they want to vaccinate me for Hep B. The Hep B has me a little confused. Do I really need it? Are there any adverse side effects?

James H's November 17 reply to Tom S' November 15, 2006 - Hi Tom, The world of CHF has changed substantially over the last few years. For example, the EF number is important because almost immediately if one is under 35% EF, doctors are starting to consider an ICD. Now there are both good and bad reports on ICDs, as well as a lot of lawsuits. According to the ACC/AHA guidelines, ICDs have the ability to aggravate heart failure and in effect at times make it worse. If you are in a-fib as well, this can set off shocks in the ICD. This is an additional complication for newly diagnosed CHFers as it increases the pressure one is under right away.
     I do agree though, that veterans of CHF have much to offer. I have CHF and I have e-mailed and called cardiologists and talked to at least 20 PCP doctors over the last two months. However, Jon's site has provided me with the best information on CHF as well as very helpful guidance on how to proceed - as well the archive of posts has given me a better perspective. There is really great stuff here.

Lauren A, November 18, 2006 - Hello, Has anyone else had a problem with getting a pneumonia shot? On Thursday I had my second one since diagnosis (the first one was 6 years ago). This is the second time I've had a bad reaction, including fever, headache, body aches, and chills. My PCP talked me into it by saying the first reaction was probably a fluke so I agreed because he thought the vaccination was important.
     The first reaction ended up with me going to an Urgent Care facility since we were on vacation. The reaction lasted 4 to 5 days. I have gotten a flu shot every year since I was diagnosed in 1998 and other than a sore arm, I have never had a bad reaction. I am healthy, rarely catch anything and my CHF is under control with no hospitalizations, or any other bad reactions.
     Has anyone else experienced this? Thanks for your feedback. Lauren.

Peter S, November 18, 2006 - Hi all, Many of us diligently track our weight on a daily or frequent basis. It is thus important to have a bathroom scale that is both accurate and consistent, plus the ability to measure in small increments. Any thoughts or experience with particular brands or types? Suggestions appreciated. Peter.
Jon's note: I've had good results with a medium to high end Taylor LED scale with glass footing.

Peter S, November 18, 2006 - Hi all, A question for anyone, but probably mostly for Jon. Many CHFers have an enlarged heart due to dilated cardiopyopathy, but I have been unable to find on this site (or others) some sort of specific measurement statistic even if within a range that defines the degree of enlargement. Surely there is prognostic value related to a diagnosis of mild, moderate or severe.
     I realize there is no simple answer to this, but for example in my case, the left ventricular diastolic is 4.3cm and the systolic 3.4cm, with posterior wall thickness of 1.3cm, according to the interpratation of my most recent echo. Could this be considered "enlargement?" The reason I raise this question is that I had a recent chest x-ray and the technical report simply used the term enlarged heart.
Jon's note: See the link in your post under the heading "Reading Echo Results" - the whole article is quite important. Almost all doctors go by left ventricle size when talking about heart enlargement. Always get numbers - terms like mild and severe differ radically in meaning from one doctor to the next!

David W's November 18 reply to Jon R's November 17, 2006 - Hi Jon R, I think getting a flu shot is very important since we can get pneumonia very easily and that is very bad for those of us with CHF. I have gotten a flu shot every year since my diagnosis in 2000 and have not had the flu so I think it is worth getting the shot.
     I had a pacemaker check up with the St. Jude's rep yesterday. He raised and lowered my pacemaker and asked if I could tell any difference but I could not. He said my own heart is working at 65 to 70 beats a minute and the pacemaker is set at 75 beats a minute. I go to the cardilologist in two weeks to talk to him about the pacemaker, but I am happy with my pacemaker.
     On the subject of working, I think it is a good idea but you have to find how much work you can tolerate. I can handle 5 to 6 hours a day five days a week and that is it. If I work more than that, I get way too tired. The extra money is nice but I think working helps me more mentally. I have to think and use my brain and I feel useful even if all I am doing is delivering pizzas. I like keeping busy and I am so tired of staying home all the time. For five years I was too sick to work but now that I can work I enjoy working.

Lowell P, November 18, 2006 - Hi, I have been looking through my lab reports and tests. I see that one of the reports said I have a left bundle branch block with normal underlying sinus rythmn. Does this LBBB, in your opinion, indicate the need for anticoagulants like warfarin. As I said in other posts, I have varying advice on this. Thanks Jon, Lowell.
Jon's note: Not necessarily. However, it means you should be tested to see if a BiV pacemaker is right for you. In CHFers with LBBB, it often improves your condition.

Ernest W, November 18, 2006 - Hi everyone, I just found this site and hope I can feel better about just being diagnosed with congestive heart falure. It's good to know I am not alone and I want to do what is best for my condition. Anybody out there to give me some emotional advice I would appreciate it.

Sandy N's November 20 reply to Ernest W's November 18, 2006 - Hi Joe, You are just starting the long road of CHF and I want you to know, although you're afraid and think you're at the end of the road of life, that you're not! I was diagnosed 3 years ago by a useless doctor, who told me that I was dying and had maybe a year to live. He had no tests or cures for me and just said to go home and contact hospice. He scared me almost to death.
     I found another doctor who specialized in CHF and started to treat more than my health, he treated my mind as well. I am not going to die any time soon if I do not want to, was what he said. I started meds and treatments, got an ICD/pacer and have been conditioning my mind to live.
     I changed all my bad habits and stopped eating the foods that were hurting me, and totally changed my life for the better! Luckily, my friends and family are very supportive and have helped me also. It's your mind that will do you the most good. Get more out of life and do what you can for fun. I am now 59 and have bad and good days, but I'm not afraid anymore. I trust myself and my life is very full - full of all the things that make me happy!
     Please don't let this illness get the best of you, you're probably going to be fine! Just make the needed changes and adjustments and smile every day. Don't forget to smell the roses along the way. Good luck to you, Joe!

Bill H's November 20 reply to Ernest W's November 18, 2006 - Hi Ernest, Give yourself a little time to be depressed and feel a little sorry for yourself. Don't let it go on too long, though. Read everything you can on the subject, go to The Manual and read it. Remember it's not the end of the world, but a change in the the way you do things. Good luck.

Scott B's November 20 reply to Peter S' November 18, 2006 - Hi Peter, I do not have a specific brand of scale in mind, but I can make some recommendations:

Good luck with your quest.

Tony M, November 20, 2006 - Hi Everyone, Happy Thanksgiving to you all. I know after six months of playing change out my mask. I now have gotten my CPAP to work as it should and I would like to know how many of you who use a CPAP have gone through the sleepy stage they told me about at the sleep clinic? I was told at the sleep clinic that my body would try to get back lost sleep and I would be very tired when I woke up and I would also want sleep more than I used to due to the fact my body wants its lost sleep back.
     I couldn't be one of those who feel great a week later like you hear about all the time. I have used the nasal pillows for a week and half. It's been great except the excessive tiredness, but after going two years or so with insomnia, I love the feeling that I now want to go to sleep. How many of you that use a CPAP on a daily basis know what adjustments I am talking about and did it take a full year or about a year for you to feel better?
     I hope to break the year deal and feel better in a few months. I am tired of wanting for years to go by. It's also nice to see how many people tried to help Jon out on getting a CPAP. I wish his insurance company could read this web site and see how many people they really help and how important they are. Tony Myrick.

Jack S' November 21 reply to Tony M's November 20, 2006 - Hi Tony, I have been using CPAP since 9/20/2006, however I need a sleeping pill to tolerate the mask or pillows. I now can get about 6 to 7 hours sleep by alternating between a hybrid with pillows and a mask that covers my nose. I feel so much better with a full night's sleep, but I get sleepy if I read or watch TV. I'm going to cut back on sleeping pills in the near future.

Mary C's November 21 reply to Tony M's November 20, 2006 - Hi Tony, First off, everyone is different. Sleep labs should be careful what they tell patients because they can place within you a negative thought about how long it will take. My sleep lab people said it gets a little getting used to, then your sleep will adjust to it.
     You must practice good sleep hygiene - you know, get up at the same time every morning and go to bed at the same time every night. This helps the CPAP reramp your brain. Your brain then sets off signals on its own to get you in and out of sleep more quickly. It only took me a couple of weeks because I was consistent with the sleep hygiene and mask.
     I can now ramp 5, and sleep in two. It is a process of training your brain and keeping a positive attitude. Knowing the CPAP will help my heart remodeling is a great encouragement. It also helps if you lose weight when overweight because in the wee hours certain hormone are produced and released. If you are awake they are made. Good luck. Have fun with it. My husband and I always kiss through our mask, the clink sound cracks us up.

Laurie N, November 21, 2006 - Hi everyone, I am so glad to have found this site! I was just diagnosed this week with CHF with an EF of 30%. I was scared out of my wits that every little pain I have in my chest is the end. I don't deal well with stress, so I am thinking the constant chest pain is stress and fear related.
     I have other chronic conditions (asthma, multiple sclerosis, diabetes, and high blood pressure) that are all well controlled at this point. Does anyone out there have MS? I have been told to stop taking my Avonex shot as there has been a rare correlation between heart failure and that drug.
     Thank you for any guidance you can give me. I am trying to keep positive, but hey, it's hard!

Brenda T, November 22, 2006 - Hi, I think this is worth a try. I have looked at many different brands online to find the CoQ10 brand that is in the purest form (not a lot of additives). Can anyone recommend a good brand, on or offline? Thanks so much.

Joseph A, November 23, 2006 - Hi, I have been having some problems lately and I had a person closer to me down load my ICD's information. He seems to think that since my ICD was doing the work for too long, that my AV node has shut down and now I am 100% dependent on my ICD. He took my blood pressure down to 40 and there was no response on my part. I am currently at 90 beats per minute. Has anyone ever had this happen or is this common? Can everyone with a-fib and an ICD look forward to this problem. Thanks, Joe.
Jon's note: If this is true, you should talk to an electrophysiologist about getting a pacemaker as primary pacing device and use ICD as backup for that, with its primary purpose as defibrillator. Yours is the first case of such bad programming I have heard. I would talk to Medtronic about them paying for a pacer/ICD combination unit as replacement (if the latest results are correct).

Nancy S' November 23 reply to Jon R's November 17, 2006 - Hi Jon R, There is a series of 3 Hepatitis B shots. Where I work, we are required to have them and I've never known anybody to have a reaction to them. As a matter of fact, lots of hospitals are giving them to newborn babies before they leave the hospital. As far as the flu shots, both my husband and I take one each year. None of my doctors have mentioned that I shouldn't and they think I should have them.
     Lowell, I have LBBB and a BiV pacemaker. My pacer has made a huge difference in my life. I was to the point that all I did was work and sleep. Since getting it, I'm still working but come home and do things around the house like cooking, gardening, etc. I hope you'll take Jon's advice and check into it. If your doctor doesn't suggest it then you should ask about it yourself. Nancy.

Evelyn G, November 23, 2006 - Hi all, We are having a water-softener installed today. My question is, do they have a no-sodium salt to use for the conditioner and we were going to try it. Now as you know, if it's no-sodium it has potassium in it so I need to find out if this is going to require me to change my dosage of potassium that I'm currently on. Opinions needed!
     I asked my current doc's office they just said no it shouldn't change anything - typical them, they wouldn't even tell me what my EF was last time I was tested in September. They never do blood work either. It's been months since I've had my blood tested. I don't know what to do.
Jon's note: First, get a new doctor as soon as possible. He is no good, based on the information you give here. Second, call the water softener free call line and find out how much sodium the water softener adds to each 8 oz of water. All water softener systems for a whole house add sodium. We have ours shut off and are going to have it removed - it came with the house.

Barb N, November 23, 2006 - Hi everyone, Regarding CPAP, there is a web site with a good moderated message board called which will help folks who need CPAP on many details. It is well worth perusing even before a sleep study to find out what questions to ask and alternatives for getting and financing equipment.
     However,it is great to see more doctors becoming familiar with the high prevalance of sleep apnea in CHFers and the association between apnea and CHF. An important consideration is that a lot of CHFers have central sleep apnea, meaning the body does not respond to increased Co2 in the blood by triggering a breath, instead of or in addition to, obstructive sleep apnea. CPAP or dental appliances may not help much with central apnea or supplementary oxygen may be required. There is apparently a new type of CPAP machine that is supposed to assist with centrals.
Jon's note: That is called V-PAP.

Jon, November 23, 2006 - Hi all, Also regarding CPAP, my rheumatologist has okayed me trying a used CPAP machine in conjunction with my sleep doctor's input. We're now saving pennies. I have 4 separate (unrelated) sleep disorders including insomnia, RLS, apnea, and fluctuating blood oxygen levels unrelated to the other problems, so I wasn't going to play with one on my own, but if my sleep doctor goes along, I'm going for it. So to all those who e-mailed me about potential used/reconditioned CPAP machines, please be patient and e-mail them to me again. <g>
     My health problems have become so numerous and complex that I have to talk with multiple doctors to get a variety of perspectives before making treatment decision. Jon.

Jon, November 27, 2006 - Hi everybody, I apologize for the delay in posts but I got a serious side effect to a new med and just this morning figured out what was causing it so I'm down 1/3 on the dose and feeling better. So it goes. Thank you for your patience. Please excuse any typos - I'm still a little shaky. Jon.

Sharon S' November 27 reply to Brenda T's November 13, 2006 - Hi Brenda, I live in southern California at about 1600 feet. I have CHF (EF 34%), a pacemaker and a-fib. My cardiologist is talking about a biventricular pacemaker soon. I have a dual chamber pacemaker right now for complete heart block.
     We went to Kanab in August and stayed at the Victorian Charm Inn for several days. I had no problems, other than the usual. Then we drove up to the North Rim of the Grand Canyon, which is at about 10,000 feet. I could barely walk across the parking lot. I think you'll be fine in Kanab. Enjoy the animal sancturary. It's awesome! Sharon.

Debbie B's November 27 reply to Evelyn G's November 23, 2006 - Hi Evelyn, We have a whole house water softener and we use 100% potassium pellets for it. The bag says it adds absolutely no sodium to the water. However, being potassium, I would imagine that would have an impact on your potassium levels. The brand we use is called Nature's Own Potassium. It is more expensive than sodium but I feel like it tastes better. I hope this helps!

Bev T, November 27, 2006 - Hi all, I've just been to my endocrinologist who wants me to try Byetta to enhance the Amaryl and Lipitor. I also have DCM, CHF, etc. Have any of you had any experience with Byetta? If so, how has it affected your heart conditions? Any information would be greatly appreciated. I'm not too anxious to go through the nausea, etc,..., that you go through to titrate up, but want to do what's best. Thanks, Bev.

Ann D, November 27, 2006 - Hi there everyone, I'm new to your group and new to CHF. My doctor is working me up for a "stiff heart." I'm scheduled for a right and left heart cath with biopsy as soon as I work out my finances. Does anyone have this type of problem? I'm 57 and was in great health until about 5 months ago. I also have mild pleural effusions and a BNP that is 800.
     Any comments? Thanks in advance.

William J, November 27, 2006 - Hi all, In addition to a serious case of CHF, I have just been told that I also have Pulmonary Arterial Hypertension which I understand is not a good thing to have. Has anyone had any experience with this disease?

Val L's November 27 reply to Brenda T's November 22, 2006 - Hi Brenda, Solanova is a good brand of CoQ. It is easily absorbed which I would say is more important than avoiding any additives in the formulation.
     Someone was worried about toxins in flu and pneumonia shots. I too worry about this and have refused any shots so far. I worry about mercury. I have had endless problems with mercury in my body since my silver fillings were drilled out and new silver fillings put in, without any precautions - the problems include a rapid heart beat.
     I have no silver fillings now but many problems remain as the mercury can travel round the body and enter the cells, especially when you are in a poor state of health. I do not know the content of the commonly given shots, so despite my worries about pneumonia and flu, I avoid the shots and hope for the best. I don't want to stress anyone unduly. A lot of people don't have any problems from silver fillings.

Kelley M, November 27, 2006 - Hello everyone, This is my first post on this site. My soon-to-be fiance was just diagnosed with congestive heart failure. He has a ejection fraction of 30% and his doctor mentioned him getting an ICD. At the moment I am suffering from a severe lack of information. We are both in our senior year at college (we are both 22 years old) and I am worried about him being able to eat well. Everything served in the cafeterias is soaked in butter or oil. If anyone knows of some good books on nutrition I would be grateful for the titles. I also need to find out more about heart failure.
     If any of you have book titles on this subject as well I'd love to know them. It seems like his doctor did not give him very much information at all. My boyfriend didn't get any pamphlets or information to take home with him about life style changes or exercise.
     How much sleep do people with heart failure need? As a college student it is not uncommon for him to get 5 hours of sleep a night (and sometimes less). Jon's note - nine hours is usual for CHFers. I know it is important that you get sleep so the heart can rest and I am worried that he has been damaging his heart for some time now. Any information you can give me would be great.
I am trying to stay positive but I am really worried about him and I don't think the news has quite sunk in for him (how could it?). I know it is going to take awhile for both of us to adjust to this news. Any reassurance I can give him would be great. Thanks for any help you can offer.
Jon's note: Follow the links in your post for starters.

Mary C's November 29 reply to William J's November 27, 2006 - Hi William, Yes, I also struggled with this. You need a very good doctor who understands this disease. It is not for the ordinary cardiologist. If you live in California, try UCSF Dr. Rame, whom I consider an expert in the field. He is worth the money to see.
     If you don't live in California, ask him where to go in the part of the country you do live. See erame @medicine.ucsf.ed (leave out the space before the @). He is very good at what he does and he is very kind and spends a lot of time with you. May God bless you.

Verna L's November 29 reply to William J's November 27, 2006 - Hi William, I have diastolic heart failure and pulmonary hypertension, which is secondary to that and severe sleep apnea. My PH is mild, but the treatment is to treat the sleep apnea and heart failure to keep pulmonary artery pressure down, at least in my case. It must be working for me, it is unchanged by echo for the last 3-1/2 years. I would advise you to see a PH specialist regarding this since most doctors do not understand it or how to treat it and it is a very serious disease when untreated. Good luck.

Mary C's November 29 reply to Ann D's November 27, 2006 - Hi Ann, By a stiff heart, are you talking about diastolic heart failure? Then your heart has a tendency to not relax enough to fill fully with blood and then pump again. It is very hard to control unless you have the right meds. Go to The Manual and the heart failure FAQ and read on this type of heart failure. You need a CHF specialist to get this under control. I went to 3 cardiologists in town before I realized because of this site that I needed a very knowledgable doctor. I ended up going to a major hospital, UCSF, to see Dr. Rame. Also, if it is DHF, it is my understanding the medication is tricky, so be patient and a strong advocate. Much love to your heart.

Jennifer M, November 29, 2006 - Hello, My fiance was just diagnosed (at age 35) with idiopathic dilated cardiomyopathy. He has an EF of 15% with PVCs and bigeminy. His father also had cardiomyopathy, which was diagnosed in his 30s. His father had a heart transplant at age 38 and died at age 42.
     My fiance had been not feeling well for a few weeks, yet he kept going to work as a welder, repeatedly lifting over 100 lbs daily. He got to the point that he felt bloated all the time, especially after eating, was coughing a lot and vomiting up blood, and found it difficult to breathe. He went into the emergency room and they admitted him, thinking it was pancreatitis or gallstones. Then they thought it was his liver because he has Hepatitis C. They eventually decided to say they "thought" it might be peptic ulcer disease and after 2 paracentesis to drain fluid in his abdomen, sent him home on Protonix, Lasix, and Aldactone with a referral to a gastroenterologist and told him to go back to work in 2 weeks. The doctor even wrote in the notes, "His labored breathing and tachycardia is somewhat intriguing to me." His heart rate had been 130. He was discharged on a Tuesday morning and by that afternoon, he said to me, "Look at my knees." They looked like big fluid-filled balloons. He called the doctor and they told him it was probably just from standing and walking after 4 days of lying in a hospital bed. He called 2 more times over the next few days because he felt worse and could no longer lie in bed - he had to sit up in the recliner to breathe.
      He finally returned to the emergency room 5 days after discharge. We demanded an internal medicine doctor because we still thought it was something gastrointestinal. The doctor was concerned by his heart rate, which was now at 155 and they barely got a blood pressure. After he ordered an echo, he was admitted to ICU with congestive heart failure. His EF at admittance was 10%. They literally told me he would have to immediately go on a heart transplant waiting list, but on the second night he began to come around and responded to the meds. He lost 25 lbs in fluid in one week at the hospital. Now they are talking an ICD, I think a biventricular pacer very soon and no heart transplant wait list yet, but they do keep referring to a possible future heart transplant. They are saying the next year will tell us if he really improves or not.
     He is on Coreg at 6.25mg twice daily, digoxin, lisinopril, Aldactone, Lasix, aspirin (they stopped Coumadin after his trip Thanksgiving week to the heart hospital for a cath to rule out coronary artery blockages as a cause), folic acid, magnesium, Lexapro (antidepresant), Nexium (for new diagnosis of hiatal hernia, small esophagitis, and gastritis since last week) and a multivitamin. They did not reinstate potassium at the last hospital visit.
     One of the questions I have is, could the first doctor's failure in properly diagnosing him have caused his EF to decrease and placed him in congestive heart failure? Would he have been this badly off had they caught this when he was in a week earlier? Also, we were having major financial problems trying to recover from after my car transmission collapsed this summer. We were barely getting by trying to pay off that debt. Now we just lost all his income and have to navigate the disability nightmare. He was just diagnosed on October 29th. This is now a month later, hitting us hard. We are likely getting our electric and water service shut off in December, although I am told they cannot shut your electricity service off in winter. We are being called daily (starting about a week and a half ago) by his credit card companies because I just couldn't make the payments for him because of paying off my car debt. We can barely afford to buy groceries.
     I am wondering if some of you faced this situation when you were diagnosed (if this came as a sudden diagnosis like his did) to get by with loss of income? We don't know what to do or whom to call. We do not qualify for food, energy or rent assistance because I make too much. All he can get is medical assistance because they do not count my income for that. We have been in a placement battle for his children since April and it is likely going to be decided in 2 weeks (the guardian ad litem does not think this will hurt us in winning). I checked and we will qualify for some minimal assistance if we get the children, since we will be a household of 4 and then my income barely qualifies.
     I am stressed out about this and trying not to let on to him how badly off we are, even though I know he does know, because he doesn't need the added stress. Also, how do I deal with his depression? How can I support him? He watched his father die of the same heart condition and is convinced, no matter the doctors or I tell him, that his days are numbered for sure also. He used to be an alcoholic and when he got out of the hospital the first time, he went on a 2 week binge. I think that's what landed him back in the hospital after 2 weeks.
     He is sober again now, mainly after a butt-chewing by the doctors, but just sits around and sleeps a lot. He doesn't talk much, although that has improved somewhat the last day or so. He has only once or twice slept in the bedroom with me and usually sleeps on the couch. He has no interest in intimacy. He thinks it is the meds and may well be. I just do not know how to support him.
     I guess I didn't think I would be dealing with this at age 33 and him only 35. I mean, just one month ago, he was healthy or so we thought and was working a very physical job and now this. I'm sorry this is so long. I guess I just have so many questions and need some advice. Even though I just typed a bunch of stuff to a screen, I already feel a bit relieved just getting it off my chest.

Jacky B, November 29, 2006 - Hi all, My cardiologist has recommened CRT possibly with an ICD. I have heart failure and LBBB. My EF has been dropping the past few months. Exactly what will this do for me?
     My biggest problem is fatigue - sometimes this is devastating and sometimes not so bad - and weak legs and arms. I also have PVCs and NSVT, which one cardiologist said I would always have and I cope with these. Other than make me feel better, will it help avoid deterioration of heart damage and prolong my life?
     I am being cautious with this recommendation and maybe should get a second opinion as I have only seen this cardiologist briefly twice, although his nurse practitioner, whom I trust completely is very experienced and thinks I am crazy not to go ahead with the CRT. I see my PCP (again I trust her) next week. My thoughts on this fluctuate with the way I feel! Jacky.
Jon's note: Always get a second opinion when in any doubt whatsoever about your treatment! Not to so do would be the crazy thing. Personally, I do not deal with nurse practitioners for heart failure - only my heart failure specialist. It's just too complex and whether they like hearing it or not, nurses (regardless of extra education) are not CHF docs.

Barb N's November 29 reply to Bev T's November 27, 2006 - Hi Bev, I have been taking Byetta since May (off label - I also use insulin). It's been a pretty good drug for me, with not too much in the way of nausea or weight loss either, but I have been able to cut my insulin dose by more than half and keep pretty good blood sugar control without hypoglycemia.
     Regarding heart effects, Byetta appears to have pressor effects in animal studies so it could increase blood pressure. In rats, this seems to be made worse by beta-blockers. This information is not included on the label, but I found it using Medline searches. I've definitely noticed an increase in ectopic beats and have seen this side effect reported on the FDA adverse reactions log. Also I feel more obvious pulses at my ankles and wrists.
     On the positive side, I've had less edema and over all more energy. I also like the possibility (demonstrated only in animal trials) of pancreatic beta cell regeneration, as well as better blood lipids. In my opinion the advantages outweigh the drawbacks, but do note that Byetta hasn't been formally evaluated in CHFers. The has a good moderated Byetta discussion group, with an FAQ, as well as tips on traveling with Byetta.

Ann L's November 29 reply to Kelley M's November 27, 2006 - Hi Kelley, Get started on the diet as soon as possible. It's not the fat in this case, it's the sodium. Until you get info on the diet, cut out all cheese, anything pickled (pickles, artichokes from a jar, hot peppers, capers), soups, and gravy. Oh, and deli meats, even turkey are loaded with sodium. All of this list is common for college students so it will be a bit difficult. If he has noticed swelling in the ankle area, he may notice immediate improvement after starting on the low-sodium diet; I hope so. Don't even think of using salad dressings. He will learn to like oil and vinegar.

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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