The paperwork never ends The Archives
September 1-15, 2005 Archive Index CHFpatients.com

Serena C 9-1     exercise and angina questions
 
Jon's 9-1 reply to Serena C's 9-1     posts and site, exercise and angina
 
Giorg 9-1     fluid intake, thirst
 
Laurie G 9-1     diastolic heart problems - questions
 
Jon's 9-1 reply to Laurie G's 9-1     diastolic heart problems
 
Sandy N's 9-1 reply to Cheryl C's 8-31     fluid intake and fruit
 
Gene G 9-1     seek info on inflatable body pillow
 
Pat Y 9-3     supporting the web site
 
John F 9-3     does CHF complicate respiratory problems?
 
Norma L 9-3     does anyone get fluid in sinuses?
 
Jack D's 9-3 reply to Cheryl C's 8-31     water content in foods
 
Tammy T 9-3     seek CHF specialist near Portage, Indiania, USA
 
Roger H 9-3     surgery messed up blood counts & more
 
Lisa L 9-5     seek experiences with inappropriate ICD shocks
 
Sandy N's 9-5 reply to Norma L's 9-3     fluid in sinuses
 
Jack I 9-5     will edema go away?
 
Marilyn M's 9-6 reply to Lisa L's 9-5     ICD shocks
 
Norma L's 9-6 reply to Sandy N's 9-5     nasal drip
 
Cathy D 9-6     experience at higher altitudes with heart failure
 
Donna W 9-8     can meds help this much? & more
 
Jacky B 9-8     confused about BNP results
 
Lynda Y's 9-8 reply to Cathy D's 9-6     bad experience at high altitude with CHF
 
Melinda H 9-8     how bad do you think this is?
 
Joe W 9-8     you must help direct your medical treatment
 
Lowell P 9-9     BNP questions
 
Jon's 9-9 reply to Lowell P's 9-9     BNP and more
 
Patricia P's 9-9 reply to Donna W's 9-8     anxiety misdiagnosis experience & more
 
Bill H's 9-9 reply to Melinda H's 9-8     helping your mother-in-law
 
Bill H 9-9     seek suggestions on gout
 
Sandy N's 9-9 reply to Melinda H's 9-8     helping your mother-in-law
 
Jeannine L 9-9     I had stem cell therapy in Thailand
 
Tom S' 9-10 reply to Jeannine L's 9-9     stem cell therapy
 
Giorg's 9-10 reply to Jeannine L's 9-9     stem cell therapy
 
Marty C's 9-10 reply to Bill H's 9-9     colchicine for gout experience
 
Mary M 9-10     update on Bob - amiodarone experience
 
Lowell P's 9-10 reply to Jon's 9-9     BNP, meds
 
Lowell P's 9-12 reply to Jon's 9-10     BNP, BBB, pressures, heart size
 
Jon's 9-12 reply to Lowell P's 9-12     BNP, BBB, heart size
 
Denese C 9-12     do you find it hard to fall asleep?
 
Bill H's 9-12 reply to Marty C's 9-10     what foods worsen or trigger gout?
 
Roger G's 9-12 reply to Bill H's 9-9     cherries and gout
 
Lowell P's 9-13 reply to Jon's 9-12     QRS and more
 
Jon's 9-13 reply to Lowell P's 9-13     QRS and more
 
Yana W 9-13     shouldn't he be treated for this?
 
Cary D's 9-13 reply to Bill H's 9-9     gout
 
Peter S' 9-14 reply to Tom S' 9-10     stem cell therapies
 
Diana D 9-14     ankle pain question
 
Wayne R's 9-14 reply to Jon's 9-13     what is this problem you mentioned?
 
Jon's 9-14 reply to Wayne R's 9-14     Jon health update
 
Jon 9-15     Jon health update
 


Serena C, September 1, 2005 - Hi Jon, I am curious about angina. My family member who has CHF can get a slight ache in the jaw if he walks too fast. He has a BiV pacemaker/ICD and takes the usual meds. The CHF specialist explained this as angina and said it's fine and to try increasing the nitro patch dosage a little bit. I reviewed your exercise page (where you mention 2.5 miles per hour pace for class 2) and I remember a post awhile back where you talked about target heart rates with Coreg.
     I guess my question is, if one is getting angina should they be exercising at that rate/level? Is it an issue that nitro is needed to help achieve that rate without angina occuring? Is hitting a certain exercise target the main goal (regardless of the presence of angina or needing some nitro)? I hope this is not too confusing.
     As usual, thanks for keeping this page going Jon. sr_email123@yahoo.com
 
Jon's note: You can find lots of questions with links directly to answers at chfpatients.com/archives/archives_search.htm.


Jon's September 1 reply to Serena C's September 1, 2005 - Hi all, First, the posts have been going up a bit erratically and will continue to do so briefly. We have had no hot water, no furnace, and almost no electricity in our kitchen for awhile due to lack of money to get it all fixed. That's made it very difficult to get household things done and still stay on top of online things. We got an advance on the loan we applied for today so hopeful by the end of this weekend, we'll at least have hot water again.
     Nonetheless, I am working on getting our readers a discount on heart failure specific supplements at a reliable online supplements store, and am working with a cardiologist on starting a survey-style study of a certain subgroup of CHFers through this web site. All these things are also taking up a lot of time and effort. Toss in a complete rewrite almost done of our exercise pages so more people can get much more benefit from exercise without needing any equipment and I'm kind of tired. ;-)
     Serena, these are actually good questions. Angina can indicate ischemia - reduced blood flow to the heart. For that reason, you generally should not continue exercising once angina occurs.
     Taking nitro will expand (relax, dilate) your blood vessels, which allows more blood to flow through them to your heart. This allows your heart to get more oxygen, which reduces the chest pain. A CHFer needs to talk to his cardiologist about how his angina relates to different kinds of exercise, so the heart is never deprived of enough blood (and thus oxygen) to damage the heart muscle.
     In my opinion, hitting a specific exercise target is not as important as exercising one way or another every day. With angina lurking in the background or established CAD, it's probably better to exercise at a more leisurely pace and go for the longer time, rather than speed or intensity. I hope it helps, Jon.


Giorg, September 1, 2005 - Hi all, Again about fluid intake, I know from my cardiologist that the less I drink the less diuretic I need. In fact, when I drink less than one liter a day, 20 mg of Lasix per day is even too much for me. When I drink 2 liters a day, I need at least 30 mg Lasix per day. So I do my best to reduce fluid intake because I do not want to be stuffed with diuretics.
     Fruits and veggies contain more then 60% water, pasta contains 3 times its weight when dry. Also, bread and pizza contain a good amount of water. Where there are carbohydrates surely there is water around. Soups clearly are mostly liquid. So watch out also the food, not only the beverage.
     About being thirsty, it is all about getting used to a reduced fluid intake and clearly about reducing salt intake. After 4 years of experience with my DCM, I can even stay all day long from 8:00 AM to 8:00 PM without drinking and when I am dry I feel much better. I feel thirsty only in two cases: When I drink too much and when I get a little decompensated. As most of you know, when one is retaining fluid he (paradoxically) feels thirsty. Also, when I take too much Lasix I feel thirsty. One kilo (2 pounds) more of water in my body is enough for causing me lots of PVCs, bigeminy, and feeling tired. So to me being strict about reducing fluid intake is fundamental. giorgclunei@hotmail.com
 
Jon's note: Giorg, I may have messed this one up, please let me know if it doesn't read as it should.


Laurie G, September 1, 2005 - Hello, I am confused about something. What is the difference between being told that you have diastolic dysfunction versus diastolic heart failure? Is DHF just the next stage that I should expect? Or, can you just have mild diastolic dysfunction without it turning into anything else?
     My echo showed mild diastolic dysfunction and my doctor said that this was caused by my high blood pressure so the medication that I have been on for the last few years was doubled. I exercise daily without any problem and do not have any shortness of breath. Also, can this be reversed if the blood pressure is controlled? It is all pretty unsettling. Thanks. lgmaxg@aol.com


Jon's September 1 reply to Laurie G's September 1, 2005 - Hi Laurie, Diastolic dysfunction means the relaxation (filling) phase of your heart beat cycle is not up to par. Diastolic heart failure is diastolic dysfunction that causes heart failure symptoms. If your heart muscle was not damaged during your high blood pressure, you may never go into heart failure from it. If damage was done, you might go into CHF. There is no clear way to tell unless damage occurred and was pretty severe. Let's hope not! Jon.


Sandy N's September 1 reply to Cheryl C's August 31, 2005 - Hi Cheryl, What I have done is take two 2-liter bottles and fill them with water. Then, with each cup of liquid I drink, I empty out a cup from the bottle. I did this for several weeks until I knew it by heart. As for the peach or apple, blend one in the blender and measure the liquid After doing this for a few weeks, you will know how to judge your intake. Remember, soup, jello, and yogurt. Good luck! bleuskiiisgrl@yahoo.com


Gene G, September 1, 2005 - Hi everyone, About an inflatable pillow for upper body. Someone last year posted a message that described a large "pillow" that could be inflated and that could support the upper body at an angle when one was sleeping. It was particularly interesting because it could be inflatable to different levels and it supported the upper body, not just the head or neck. If you could, can you kindly post or send me that info again? Thanks, Gene. gene.goorchenko@genzyme.com


Pat Y, September 3, 2005 - Hi everyone, My monthly donation was mailed early this afternoon. I encourage all who feel this site is valuable to make some kind of donation. A few dollars from many can go far. We all need this site to continue. My monthly budget includes this site. So when I write checks for bills I automatically send a donation to CHFpatients.com, Inc. Hopefully, many of you can do the same thing. PTYoumans@aol.com
 
Jon's note: To give an example of donation rates, last month we had 87,404 visitors and received exactly 20 donations. I won't give amounts but can say we are hurting badly right now.


John F, September 3, 2005 - Hi everybody, I was recently diagnosed with CHF. About the only thing I really know about it is what I glean from the Internet. A couple of days ago I got a bad cold or the flu. Prior to this I had no trouble breathing while lying down. Now I wheeze really bad unless I am sitting up. Does this have anything to do with CHF, or not? Does CHF complicate respiratory infections? AJF@cableone.net


Norma L, September 3, 2005 - Hi all, Does anyone have a problem with their sinuses seeming to fill up with fluid? I have read about the feet and legs swelling, the abdomen and liver, but I seem to get fluid in my sinuses also. Especially when I lie down! Not all the time, just the same times that my ankles swell. nvl@pennswoods.net


Jack D's September 3 reply to Cheryl C's August 31, 2005 - Hi Cheryl, Here are a few guidelines for water content:

This is all I could find but you can pretty much tell from these that all your fruits, vegetables, drinks, puddings, jellos, ice cream, etc,..., are practically all water. Your meats and hard cheeses are more than half water and when you get into baked goods only crackers and hard, dry cookies are fairly dry. maddjak@hotmail.com


Tammy T, September 3, 2005 - Hi all, I live in Portage, Indiana. Does anyone out there know of a good CHF specialist in this area? I was told that a Dr. Michael L. Wheat is good - does anyone have him for a doctor? tptdb@comcast.net


Roger H, September 3, 2005 - Hello, I found out today for sure that having my infection back in June - 5 days in Club Med and then surgery in Aug, with 6 more days at the Club, that it can really mess up the blood test counts. My A1c went from 5.4% to 6.2%, cholesterol from 189 to 157, triglycerides from 69 to 92, LDL from 139 to 114, HDL 39 to 25, and BUN was 17. Also, the risk factor was a 6.2. This surgery of having a section of colon removed seemed rougher to recover from than the 2 bypass surgeries I had earlier. Jon, sorry to hear of the financial need. I'll try to send some support as soon as I get to working again. This site is the greatest! Rog. rkharmony@highstream.net


Lisa L, September 5, 2005 - Hello everyone, I was just wondering if and how many of you have had the experience of your ICD or ICD/pacemaker inappropriately shocking you, and what your experience with that was? journey4evr@aol.com


Sandy N's September 5 reply to Normal L's September 3, 2005 - Hi Norma, Now that you speak of clogged/fluid in your sinuses, mine too, are that way! I lie down and have this clogged head and need to cough all the time. Nose spray makes it easier for me to breath and helps, now that I use a CPAP. It's like post-nasal drip. How anoying! But it's gone when I'm standing or going about my day. Does anyone have a way to get rid of this problem? bleuskiiisgrl@yahoo.com
 
Jon's note: Please note that "decongestant" nasal sprays like Afrin are dangerous to many CHFers - they can increase heart rate and aggravate arrhythmias.


Jack I, September 5, 2005 - Hi all, I have congestive heart failure caused by my arteries and a bad valve. If I have these problems taken care of, will the water accumulation go away? yellochief2@aol.com


Marilyn M's September 6 reply to Lisa L's September 5, 2005 - Hi Lisa, I have had an ICD now for over 4 years. I've been shocked due to the program numbers and not that it was a dangerous rate - but at 160 beats per minute and running - it didn't realize that I was running and that I was not in any dangerous rhythm. I've had 100s of V-tach episodes since my implant but never once got shocked for them. I was able to come out of them before the implant's software was programmed to shock. I tolerate V-tach runs fairly well so my EP doc programmed me so I could be in one and not get shocked right away.
     As far as the shocks, I can say it hurt like heck. I got 3 in a row the first time and three in a row the second time. My best advice to anyone who gets a shock is to stop whatever you're doing and sit down. I unfortunately, didn't realize what had happened until the second shock and then as I went to sit down got my third shock. Some people behind me said I looked like I might be going into an epileptic seizure - my body jerked kind of like someone who had gotten punched in the stomach.
     All this didn't have to happen if I hadn't stopped my heart meds a week prior to my race. :-( So my shocks weren't for a life-threatening arrhythmia. As I've said, I've had very good luck with coming out of my VT on my own and luckily have not needed to be shocked. Anyway, after my shocks I went back on my heart meds and three days later I was back out running in another road race with no shocks. Marilyn M. Runner7891@juno.com


Norma L's September 6 reply to Sandy N's September 5, 2005 - Hi Sandy, I was wondering if perhaps it is allergies. My doctor had prescribed an allergy pill but I don't take it regularly. I don't like the fact that every time I go into a store or for a walk, my nose runs like crazy. I never had this before CHF. I tried to get my doctor to tell me if he thought it was an aftereffect of CHF, but he would never say for sure. I think fluid from my chest comes up into my throat and sinuses. What do you think it might be? If it is fluid from my chest, then I want to know so that I can understand my problem and work with it. I have never tried sprays, and as Jon says, I have heard that they are dangerous for people with CHF. nvl@pennswoods.net


Cathy D, September 6, 2005 - Hello everyone, A few weeks ago I posted a question regarding vacationing at higher elevations. Well, it seems I have answered my own question. This weekend I took my husband camping with the kids to the North Georgia mountains at about 3500 feet. My hubby was a little short of breath but not too badly as long as he went slowly. Then I took them all up to Brasstown Bald, Georgia's highest point at 4780 feet. We were only up there about an hour, but my hubby was noticeably short of breath, fatigued, headachy and nauseous. He got a bit better once we came back down, although he slept most of the rest of that day.
     I'm rethinking our plan to go to Yellowstone next year. It's at almost 8000 feet. I don't think I can handle him and our disabled son by myself. Seattle is looking better and better. georgecd@worldnet.att.net


Donna W, September 8, 2005 - Hello, I 'm so confused and mad. Our daughter was born with a partial AC canal/septal heart defect, which was corrected 16 years ago. Her mitral valve still had trivial leakage at that time. Sixteen months ago she started sleeping a lot, being fatigued, and having memory problems. She was diagnosed with depression. Two months later she had severe shortness of breath and fainting spells. She had to start sleeping on 3 pillows.
     Her regular doctor finally sent her to a cardiologist who did an echo and a bubble echo. Her valves leak at 2 to 3+ now. She has cardiomyopathy. He started her on 5mg Lasix and digoxin. Then in January, he did a TEE and it showed her EF at 35%. She was in CHF with an enlarged heart. He has been raising her meds doses and her Altace is now at 20mg twice a day, Lasix 40mg twice a day, spironolactone 24mg, Coreg and 3.25mg twice a day, and she is doing better but still has trouble lying down.
     Another doctor he sent her to see did an echo and said she has an EF of 65% with only mild valve leakage and not CHF. Is TEE a good test? Can the meds be helping her this much? If so, can the CHF come back? ladykaye@sbcglobal.net


Jacky B, September 8, 2005 - Hello everyone, I am confused about BNP results! I have had IDCM and LBBB the past two and a half years. My BNP has been 400, 99, 149 and now 69. I know that anything over 100 signifies some stage of heart failure and below 100 is normal range, but does it mean anything in regard to the IDCM? Jacky. jackymwb@earthlink.net


Lynda Y's September 8 reply to Cathy D's September 6, 2005 - Hi Cathy, I've never posted before but have purused this site occasionally since my mother's death in December of 2002, in search of answers to my questions. She had been diagnosed with CHF (age 69) a year earlier, but was doing well so her very sudden death was devastating. Because she was no longer symptomatic except for some fatigue if she overdid things, she got the okay from her doctor to accompany us on a trip to Arizona to visit my brother (her son) for Christmas that year.
     We were all ignorant of the risk factor of higher elevations, so it probably didn't occur to her to mention to her doctor that my brother lived in Sierra Vista, Arizona, with an elevation of 4,600 feet. We're Canadian and my mom lived in Windsor, across from Detroit, which I've discovered only has an elevation of 600 feet so her body was accustomed to higher oxygen levels. We stayed with my brother for four days, during which time my mother didn't suffer from any classic symptoms such as shortness of breath or noticable water retention that could have been a red flag that she was in any danger. She only felt a bit tired if we walked around too much, so we kept any outings short and simple.
     We planned to leave my mom visiting with my brother while my family would drive to Flagstaff (elevation 7,000 feet) for an overnight stay and then sightsee at the lower rim (8,000 feet) of the Grand Canyon the next day. However, my mom begged to accompany us, saying that she'd relax in the hotel and enjoy the view, and not go walking at all. So we gave in and let her come with us, being ignorant of the consequences of this decision. It was a fatal mistake.
     Shortly after we arrived at the hotel in Flagstaff, my mom said she was feeling a bit tired from the drive and was going to take a nap before dinner. My two kids (ages 12 and 15) were helping her unpack when she suddenly slumped onto the bed. Our efforts, along with the paramedics who arrived shortly afterward, to revive her were unsuccessful. An investigation and autopsy was required from the local police and coroner, since we were "foreigners" and she had died in a hotel just after arrival. They autopsied her lungs, which were clear of any pulmonary embolism, and her heart, which was only slightly enlarged and had no blocked arteries. Her original episode of heart failure was due to atrial fibrillation, caused by undiagnosed hyerthyroidism.
     The pathologist concluded that the probable cause of death was a massive stroke, brought on from the thin oxygen levels and her original diagnosis of early stage heart failure. She had not experienced any shortness of breath or complained of anything at all other than being a bit tired. So I just wanted to encourage you to follow your gut instinct to veto the Yellowstone trip and stick with lower elevations. It just isn't worth the risk. We naively didn't realize that even if one doesn't go walking at a higher elevation, just being at it, even if sitting and relaxing can be dangerous. lyndayork@hotmail.com


Melinda H, September 8, 2005 - Hi everyone, I need some help. My mother-in-law was diagnosed with CHF about 3 years ago at the ripe age of 48 (now 51). She has been on Lasix and other meds that I don't even know about, ever since. No one in the family ever discusses it. She still smokes, only drinks Cokes and coffee all day, and loves to eat chips. Both her and her husband smoke in the house, which makes it difficult even for me to breathe (I have mild asthma and so does my son).
     Well, we got a call that she was in ICU on Sunday, 911 was called and they had to intubate her due to fluid in her lungs. She says it's because she didn't take her Lasix for 3 days. She takes 80 mg a day. They almost lost her. She was intubated for almost 48 hours and just got moved from ICU; it's been almost 5 days. This sounds really bad to me. Is it?
     No one in the family is acknowledging how bad this is. I want to say something but being the daughter-in-law, I want it to actually be heard. How do I approach a CHFer? The doc says her heart is pumping at 10 to 15% capacity but I'm not sure if that's an EF number. I am just learning about all the technical terms but I know she needs to learn how to take care of herself. She didn't even know Cokes were bad for her heart when I told her. I am sure her cardiologist has probably been yelling at her but she doesn't tell us that. What do I do?
     My two questions are: How do I help her? What class severity-wise do you think she is in? I want to make sure I'm not overreacting. Please help. jmhooks@nctv.com


Joe W, September 8, 2005 - Hi all, To help others who may be thinking about a single-lead pacemaker or who have had CHF trouble with a recently implanted pacemaker, I wanted to post a brief account about how my old single-lead pacemaker caused or provoked heart failure. I also wanted to show what was done to help get me partially out of CHF. This is also a warning not to take doctors' advice as gospel. You must help with your own treatment.
     I am currently 44 with a wife and 4 kids. We live in Mason, Ohio. I'll be glad to give more details of the account below if they are wanted. In a nutshell, I was put into heart failure by medical mistakes and a single-lead pacemaker. At the same time, I was saved repeatedly by outstanding doctors. Here goes:
     I had an artificial aortic valve implanted when I was 20 (1982) due to a bicuspid valve which was causing enlargement. I had no problems until there was a panus buildup in 2002. Due to the risk of strut-fracture of my potentially defective valve (Bjork-Shiley) already being a problem, I chose to have another aortic valve implanted. During surgery, they clipped the timing nerve between the upper and lower heart chambers. So I was in total heart block and had to have a single-lead pacemaker implanted - the medical standard for people with "normal" ejection fraction at the time. My ejection fraction at the time was about 35 to 40%.
     After returning from the hospital I never really got my "breath" back. During the next year my EF dropped to 30% and I had 3 episodes where I became very nauseous, sweated profusely, and almost passed out. I told my cardiologist about this, but he just asked me to try to take my blood pressure the next time it happened.
     Luckily, we moved to Georgia at that time (about 1-1/2 years after the surgery). While moving, I was down with a cough that would not go away and was not able to sleep lying down. I visited a family doctor, who gave me sleeping medicine so I could get some rest. After a week of feeling terrible I went back. A competent doctor then found that I was in CHF. I was put on diuretics, stared on Coreg, and an ACE inhibitor, in addition to my Coumadin and Zocor and adjusted eating habits. I lost too much weight, about 20 lbs but was feeling okay.
     I had a severe attack like the 3 prior ones. I very nearly passed out and thought it was the end. I was driving at the time but after coming to, I was able to drive down the street to my cardiologist's office. They put me in the hospital and would not let me go home without a defibrillator-vest but the vest company could not come out from California for a week. With that on, they could send me home and set me up for surgery to implant a pacemaker/ICD with a doctor my cardiologist knew.
     This is the lucky/blessed part. Due to past medical mistakes, we were not going to settle for the doctor's advice. We did a tremendous amount of research, this site included, and found the perfect doctor and what we thought was the perfect answer. We saw that studies in England found that single-lead pacers can actually cause heart failure in some patients. It turned out to be true in my case. We found one of the most well-known cardiac surgeons in the world at Emory in Atlanta, a Dr. Angel Leon. He agreed to take me on, which was a huge thing.
     Being a leader in exactly this field, he explained what the other doctors did not yet understand: With a single-lead pacer, the electric message can take quite some time to travel from the right side to the left side. So the pacer makes the right ventricle squeeze when the current hits it but since the left ventricle did not yet get the impulse, it acts as a loose balloon and absorbs the flow of blood against the walls instead of the blood flowing out of the bottom of the heart like it is supposed to. Then after this, the delayed electrical signal finally gets to the left side, the left side squeezes, and the right chamber absorbs the impact. Picture a small balloon you are holding in both hands - you could pop it if you squeeze both sides. Instead, squeeze the right hand, then the left hand - nothing really happens. Hence, there is very low blood flow out of the heart and you are only succeeding in expanding the heart's chamber walls.
     Dr. Leon placed a BiV pacemaker/ICD in me in March of 2004. At the time my ejection fraction was down to 14%. Four months later I had a Vo2max test that had my score at 19 and my ejection fraction was 19%. Now, 1-1/2 years later, I just received my scores and I have a Vo2max of 25.5 and an ejection fraction of 31%. These are by no means perfect but are dramatically better. My left ventricular dilation has gone from moderate-to-severe to only mildly enlarged. My wall thickness went from thickened to normal. This improvement is due to the BiV pacer as well as my Coreg and ACE inhibitor.
     Please be certain to do a vast amount of research into the proper doctors and medical techniques prior to any major surgery. Let me know if you have any questions. Joe Wood. joewoodmail@cinci.rr.com


Lowell P, September 9, 2005 - Hi Jon, If you recall, my last lab reports showed an elevated BUN at 68 with creatinine at 1.8. I reduced my Lasix dose by half and my BUN is now 28 and creatinine at 1.5, much better. My BNP remains elevated though, at 940. I am a bit confused by the data in the web site. One chart says that over 900 is class four but another says it is class 1. Both charts are showed under the info on BNP. Can you explain this to me Jon?
     My doctor is confused about my BNP remaining high as I have good exercise tolerance and no shortness of breath. I guess he has decided to ignore it as his attempt to bring it down with diuretics was hard on my kidneys. Am I in danger of complete heart failure with this high a BNP? Would you ask for a second opinion? Any suggestions? I'd like to hear from others about their BNP for comparison. With thanks, Lowell. Lpepper3m@aol.com


Jon's September 9 reply to Lowell P's September 9, 2005 - Hi Lowell, Some of the tables show not only average BNP results for any given heart class, but also the "highest result" for patients in that heart class who had the test. I include this to show that not all class one patients, for example, will have BNP in the average and generally accepted range. The tables require careful reading. I have been in class 2 heart failure with a BNP result of 9 myself so I know that this is not any more foolproof than any other test.
     In my opinion, diuretics are not the best way to lower BNP in a CHFer. More aggressive meds therapy in general, making sure ACE inhibitor and beta-blocker are at target dose, is the place to start. If you think further steps are needed, an aldosterone blocker type drug like Inspra may be an option. You could also consider adding an ARB to ACE inhibitor therapy.
     However, as I have said many times before, BNP is only one part of the CHF picture and is certainly not foolproof as a prognostic tool. It is intended as a diagnostic tool. Heart size, output, symptoms, exercise tolerance, heart rhythm, blood pressure, heart rate, Vo2max, thyroid function, blood sugar, kidney and liver function, and more are all just as important as BNP in the big picture. If everything else is going well, personally, I would not be happy with a BNP of 900 but I wouldn't consider it dangerous of itself. We are talking about BNP as measured in pg/ml, right? Jon.


Patricia P's September 9 reply to Donna W's September 8, 2005 - Hi Donna, I have CHF, IDCM, and leaking valves. I was also told that I was depressed or having anxiety attacks for about three years after my symptoms started, before finally being diagnosed 4 years ago this month. I went to the ER a couple of years ago with chest pains, palpitations, irregular heartbeat, weakness and extreme fatigue and was back in my driveway only 40 minutes after leaving my house. I was quickly diagnosed with an anxiety attack. I knew that it was my CHF, but did not speak up for myself. I went to my doctor a few days later to find out that my heart function had dropped 15%. I have learned to look the docter in the eye and tell him that this is not anxiety and it has helped.
     I am taking Coreg, Altace, Bumex, spironolactone, Lanoxin (digoxin), and CoQ10. I had an EF of about 15% by echo, with mitral valve leakage of 2+. About 3 weeks after my doctor switched me to Coreg, my EF went up to 48% by echo and my valve leakage went to trace amount. I was surprised that it made such a difference so quickly. Now about 2 years later, my EF stays around 40 to 45%. I have good days and bad, but mostly good.
     You have come to the right place! I can honestly say that I feel that Jon and this site has saved my life on more that one occasion. Have you read The Manual? Patricia P. pgp24815@aol.com


Bill H's September 9 reply to Melinda H's September 8, 2005 - Hi Melinda, It doesn't sound like your mother-inlaw wants much help. She has got to cut down on caffeine, leave the chips alone (there are salt-free chips that aren't too bad). She must take her meds like she is supposed to do. She needs to quit that doggoned smoking, it's hard, but it can be done. bj5250@yahoo.com


Bill H, September 9, 2005 - Hi, I suffer from gout 2 to 3 times a month. I know my weight and fluid pills are part of it. I have dropped caffeine and I got careless with my salt intake, which I blame for this last attack. I'm hoping someone can suggest some other things to do or not to do. Thanks to all. bj5250@yahoo.com
 
Jon's note: Have you talked to your doctor about allopurinol?


Sandy N's September 9 reply to Melinda H's September 8, 2005 - Hi Melinda, I'm sorry to hear your mother-in-law cares so little for her health and for the suffering she is causing you and her family. If she will not do the right things, such as not smoke (and her husband must stop smoking around her) and eat and drink the wrong foods, there is nothing you can do for her. She is killing herself and you can only make her last days as comfortable as possible. I'm a CHFer and have given up all that is bad for me, and can't understand how anyone with CHF can not care about themselves. Good luck to you and your family. bleuskiiisgrl@yahoo.com


Jeannine L, September 9, 2005 - Hi, I am a 29 year old DCM patient diagnosed in 1993. I have had an EF of 25 to 30% since then. In May of this year I traveled to Thailand where I was injected with my own stem cells in a surgical procedure. It has now been three months and an MRI last week showed an improved EF of 41%. This therapy is sold through www.theravitae.com. I hope this will help others. jeannine_lewis@yahoo.com


Tom S' September 10 reply to Jeannine L's September 9, 2005 - Hi, I'm afraid if I ever had stem cells injected in me I would grow roots and branches, and they would really have to plant me. Thailand? I knew they were great for sex shops and that alone would make me worry about where the stem cells came from. I think I'll take my chances here in the good ole U S of A. bigheart@muchomail.com


Giorg's September 10 reply to Jeannine L's September 9, 2005 - Hi, What kind of DCM do you have? How can you be so sure that it was the cell stems improving your EF? Did you have a biopsy? The difference between 30 and 40% EF is not big. What about the side effects everybody talks about, like arrhythmias? giorgclunie@hotmail.com


Marty C's September 10 reply to Bill H's September 9, 2005 - Hi Bill, I have been taking Colchicine for extremely painful arthritis in both big toes. It is a very old gout med, and has helped me a lot with no problems for my heart condition, which is very similar to yours. You might want to talk with your doc about it, it's worked well for me. Marty. padre45@aol.com


Mary M, September 10, 2005 - Hi Jon, Two months ago Bob was very ill. He was so weak and SOB he could hardly climb a small set of stairs. He suffered nausea, profuse night sweats, stumbling, headaches, etc. His cardiologist ran a battery of tests and he passed every one. She did not have an answer for us, until we investigated on the web and found out 90% of his symptoms were listed as side effects of amiodarone. Off we went to her office, printed side effects in hand, only to have her tell us that she knew it could be amiodarone-related.
     Mad is not the word for it. When was she going to tell us? He has not taken another amiodarone pill since that day. I am happy to say he is 100% improved. Today his heart failure was upgraded from class 4 to class 2. I advise anyone who has been taking amiodarone for a period of time to be very careful. It can be a dangerous drug. Thank you Jon for this wonderful site, you do a terrific job. Mary. snoopy2dane@hotmail.com


Lowell P's September 10 reply to Jon's September 9, 2005 - Hi Jon, Yes, my BNP is measured in picograms per mililiter. I am taking 75mg Avapro and 25mg Coreg per day. I was taking, I think it was enalapril (an ACE inhibitor) but didn't tolerate it well so it was discontinued. I'm going to see my cardiologist soon and get his opinion. He is not a CHF specialist. I wonder if increasing Coreg would help? Regards, Lowell. Lpepper3m@aol.com
 
Jon's note: Lowell, Is your heart still enlarged?


Lowell P's September 12 reply to Jon's September 10, 2005 - Hi Jon, As per your question, is my heart enlarged? Yes, my left ventricle is slightly enlarged as per the report from the heart clinic. This report is almost a year old. Normal is said to be 37 to 51 mm. My LV diameter was 57 mm. The left auricle though, by the report is severely enlarged and under severe pressure, with no dimensions given. The right ventricle is normal size. Right ventricular pressure is estimated at 46mmHg. I suffered a severe heart attack in my LV during my bypass surgery in June of 2004. I have mild right atrial enlargment. I don't know of course but I am speculating that the root of my high BNP is due to the high pressure in my left auricle. What do you think? Can you tell me Jon, what is a bundle branch block? Is this an interruption or delay in the electrical conductivity from auricle to ventricle? My last EF about 6 months ago was about 30%. As usual Jon, thanks for your help. Lowell. Lpepper3m@aol.com


Jon's September 12 reply to Lowell P's September 12, 2005 - Hi Lowell, Your LV size is actually normal. Six cm is now generally considered the upper limit of normal for men. There's no doubt that the pressure in your atrium is causing BNP level to remain elevated. Have you had an EKG to measure your QRS interval? If so, how long was your QRS interval? If you have bundle branch block and high atrial pressure, I wonder if a BiV pacemaker would help you. LBBB is what you say and you can read about it at chfpatients.com/text/bbb.txt. Jon.


Denesa C, September 12, 2005 - Hi, Is anyone here having a difficult time going to sleep, even when you feel tired? Suggestions and comments will be greatfully appreciated. Denese C. esened@peoplepc.com


Bill H's September 12 reply to Marty C's September 10, 2005 - Hi, Thanks for your reply. I should have mentioned that I take 300mg of allopurinol daily which should help lower my uric acid level which has been high for awhile. When I get an attack, I take prednisone, which I believe is a steroid, which stops the pain by the second pill. I've gone on the Internet several times looking for info on the subject. All the sites say the same things and give a partial listing of foods to avoid.
     I'd like to know if you or someone else may know where I could get a more complete food listing? I'm sure it's something in my diet that helps to set it off and if I can get away from that awful pain would b great. Thanks to all. bj5250@yahoo.com


Roger G's September 12 reply to Bill H's September 9, 2005 - Hi Bill, Try cherry juice for gout. When mine comes up I drink about a quart a day and take black cherry capsules. rogergthree@earthlink.net


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.

Lowell P's September 13 reply to Jon's September 12, 2005 - Hi Jon, I located a report from a year ago that gave my QRS width as 130msec. I see from your reference on BBB that anything above 110msec is considered too slow and is considered BBB. I don't know how you would categorize 130 to 110. Is that a large reduction in QRS or not? My heart rate has always been very slow but it hasn't seemed to bother me. Do you think that lowering my blood pressure would reduce the pressure in my left auricle? My blood pressure is now about 125/75. Lots of folks I know with CHF have BP about 110/60. I suppose that eventually a high pressure in the auricle would cause enlargement of the heart.
     Are the donations any better lately? Thanks Jon, Lowell. Lpepper3m@aol.com


Jon's September 13 reply to Lowell P's September 13, 2005 - Hi Lowell, If you were class 3, the official guidelines would say you should have a BiV pacemaker because your QRS is longer than 120 ms. With that in mind, I would be talking to my CHF doc immediately to be checked for an out-of-synch heart beat. You may qualify for the pacemaker despite your high (good) heart class. That could be the way to relieve that pressure - getting all your heart chambers firing as a team. That would in turn lower your BNP. I do think your blood pressure should be lower but don't believe it's a solution to your problem with atrial pressure.
     Donations actually are better this month. The number of donations is up and one couple donated what for us is a large amount. Another aside, I see my PCP again Thursday and he'll either have a treatment plan waiting to begin for this "sub-acute immunological syndrome" or I'll be getting a new PCP. Jon.


Yana W, September 13, 2005 - Hi, I am confused by my father-in-law's doctor. According to my in-law, the doctor says that his deep, rolling, gurgling cough is not in his chest, but rather is due to his heart and that his chest is clear.
     My grandmother died of CHF. She had a bad cough but it was her chest congestion due to her heart therefore, until the end, chest congestion and bronchodilator meds helped her breathe more comfortably. Also, her doctor prescribed that she sleep in an elevated hospital bed. None of this is being advised for my in-law. I hate to be suspicious, but I don't trust his doctor.
     He is coughing a pneumonia-like cough - rolling and gurgling - and his doctor says that nothing can be done. Also, he has gained 8 pounds in the last few days and his assisted living people called his doc and his doc didn't say to take him to the hospital. I happen to know that my in-law has not said that he wishes to just stay home and die. So shouldn't this weight gain and horrible cough have him in the hospital for treatment? Curious and worried, Yana. hyltonpaintingco@cs.com
 
Jon's note: Yes. Get him to another cardiologist - by way of a hospital emergency room if necessary. His current doctor is incompetent or uncaring.


Cary D's September 13 reply to Bill H's September 9, 2005 - Hi Bill, I've been told that gout happens when uric acid is high in your body. I take colchicine every other day and every day when gout shows its ugly head. Proper fluid intake usually will prevent gout from occuring. Too little fluid and you have gout, too much fluid and your body retains that fluid to make more blood. Find out how much fluid you need to prevent gout. I am not aware of any foods that cause gout. Take care. cdeen10@bellsouth.net


Peter S' September 14 reply to Tom S' September 10, 2005 - Hi Tom, I read your reply of 9/10 to Jeannnine's message of 9/9, relating to her stem cell treatment in Thailand and sense that you miss the point of Jon's message board. We are here to support each other, not make light about a course of action that someone feels may help his or her situation and reports publically. You didn't check out the web site mentioned, which also mentions that the procedure is offered in Israel and makes it clear that the stem cells come from the patient himself, not local citizens of whatever moral character.
     If you follow the CHF literature, you must be aware that stem cell treatment is a major opportunity for CHFers, even though research is far from complete. I have no connection with the web site mentioned by Jeannine and neither endorse it nor condemn it. But at least I took the time to access it and read the contents. PeterSperl@cs.com


Diana D, September 14, 2005 - Hi everyone, I am 52 years old and was diagnosed with CHF in March so I am fairly new to this site. I would like to know if anyone has experienced sharp pains in their ankles to the extent that you can't hardly walk? ddowland51@hotmail.com


Wayne R's September 14 reply to Jon's September 13, 2005 - Hi Jon, I must have missed something recently. What is this sub-acute immunological syndrome to which you refer? I'm sorry if I'm asking you to repeat yourself. Thanks, Wayne. whreos@earthlink.net


Jon's September 14 reply to Wayne R's September 14, 2005 - Hi Wayne, I was thinking this spring that I had worsening heart function since my CHF symptoms had come back with a vengeance. A very thorough cardiology workup showed this not to be the case, thus a visit to my regular doctor, and a ton more tests. He says he has seen this before and that's what he calls it: "a sub-acute immunological syndrome." <g>
     It causes me extreme fatigue, shortness of breath, short spells of substantial mental dullness, inflammation of just about every joint and connective tissue in my body including bursitis in one shoulder and both hips, renewed insomnia, and a few other equally boring goodies. He'd better have a treatment plan ready for me tomorrow now that I've taken a zillion tests.
     The pain and fatigue are the reasons our exercise section rewrite isn't done yet and also why I am still rewriting the easy online version of the new heart failure guidelines - the pdf versions are available in the FAQ section now though. I am seriously considering making the exercise and low sodium sections for registered, paying readers only so the versions of those sections on my hard drive are getting much more comprehensive to make them more valuable and will eventually be made available one way or another. Jon.


Jon, September 15, 2005 - Hi everyone, I had a doctor's appointment today and have to get a CT scan of my chest tomorrow to clarify results from my chest x-ray, so posts will be running late until Saturday. Apparently I have "mild" kidney failure and possibly some hormone problems, so I also have to see a nephrologist and have some more tests. On the plus side, I now have some meds to help me cope with current symptoms. What next? ;-) Jon.


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