The paperwork never ends The Archives
March 16-31, 2003 Archive Index

Abbe M's 2-16 reply to Valerie's 2-2     nasal sprays
Christine 2-16     have some questions
Tom S' 2-17 reply to Christine's 2-16     Coumadin experience
Kathryn 2-17     how often do you see your cardiologist & more
Kathy 2-17     seek career suggestions
Carole K 2-17     seek advice
Karin 2-17     seek CHF doc near Pittsburg
Christine's 2-18 reply to Tom S' 2-17     Coumadin and herbs questions
Tom S 2-18     Natrecor now in use
Val 2-18     no insurance, does anyone else feel this way?
Robert 2-18     hair loss and Coreg dose questions
Hal 2-18     where can I live better more cheaply?
Kathy 2-18     seek sodium or recipe information
Karen K's 2-18 reply to Christine's 2-18     have you run all this by your doc?
Joseph P 2-19     update
Mary Lou's 2-19 reply to Kathy's 2-17     a possibility
Joanne R's 2-19 reply to Kathy's 2-17     low sodium recipes
Sherlene Husfeld 2-19     seek DMSO experiences
Lorraine 2-19     note about Heluva Good Cheese
Richard K 2-19     survey participation opportunity
Mary 2-19     should I get another opinion?
Margaret D's 2-19 reply to Val's 2-18     fatigue, tests & more
Natalie K's 2-20 reply to Hal's 2-18     less expensive locations
Dan 2-20     does this sound right to you?
Cat 2-20     need advice on anesthesia
Patricia 2-20     seek CHF doc in Baton Rouge, Louisiana
Carol 2-20     why is shortness of breath worse in evening?
Tom S' 2-20 reply to Carol's 2-20     shortness of breath in the evening
Carol G's 2-21 reply to Tom S' 2-20     shortness of breath in the evening
Lisa Z's 2-21 reply to Karin's 2-17     doctor suggestion
Tracey C 2-22     sodium question
Jon's 2-22 reply to Tracey C's 2-22     sodium question
Joanne R's 2-22 reply to Val's 2-18     sleeping all the time and more
Linda O 2-22     seek pacemaker experiences
Catherine L 2-22     seek anti-depression advice
Joseph P's 2-24 reply to Linda O's 2-22     ICD experience
Betty's 2-24 reply to Linda O's 2-22     ICD experience
Angie's 2-24 reply to Robert's 2-18     Coreg experience
Joe S' 2-24 reply to Catherine L's 2-22     post-surgery experience
Dan 2-24     seek support from Christian CHFers
Allen C 2-24     there is hope and more
Davida's 2-24 reply to Tracey C's 2-22     sodium intake
Noel 2-25     Vasogen's new therapy trial
Jon's 2-25 reply to Noel's 2-25     Vasogen's new therapy trial
Pat 2-25     seek similar experiences
Lisa M 2-25     pacemaker in, now a-fib, what next?
Joseph P's 2-26 reply to Lisa M's 2-25     some questions
Katherine H's 2-26 reply to Lisa M's 2-25     pacemakers
Mel G 2-26     blood pressure and heart rate question
Betty 2-26     what is a-fib?
Margaret D's 2-27 reply to Mel G's 2-26     blood pressure, meds
John K 2-27     question about taking blood pressure
Jamie 2-27     why the next day blahs?
Cathy 2-27     gemfibrozil question
Valerie R 2-27     sudden downturn - questions
Joseph P's 2-28 reply to Valerie's R 2-27     I know what you mean
Tom S' 2-28 reply to Valerie's R 2-27     my experience

Abbe M's Fabruary 16 reply to Valerie's February 2, 2003 - Hi, I have been reading Jon's Place since my husband was diagnosed with IDCM last June. Knowledge is power and this site enables my husband and I as his advocate, when necessary, to feel empowered regarding his health care.
     This brings me to Valerie's post regarding Nasacort and the nasal irritation. I am a nurse in an allergy/immunology/internal medicine department so I have experience with treating this very common side effect from nasal sprays. First of all you can go to the grocery store and purchase Ocean Mist which is buffered normal saline, not enough salt to have any effect on CHF, and an antibiotic ointment. You want to spray your nasal passages with the Ocean Mist first then follow up with a thin coat of the ointment using a cotton swab to apply to the inside of each nostril. Also when using Nasacort you don't want to point the applicator straight up and then spray toward the septum of your nose because this area does bleed very easy. Point the tip of the applicator out to the corner of each eye so you spray away from your septum.
     If after you have stopped the Nasacort and your cough returned, and your CHF is controlled, it could very well be that without Nasacort you have post-nasal drip down the back of your throat and that will cause a cough, especially when you lay down. As always though, discuss this with your prescribing doctor, since anyone with cardiac issues is not a simple patient. My husband has allergies too and he uses a nasal inhaled steroid daily in addition to his daily cardiac medications. I hope this has been helpful. Take care, Abbe.

Christine, February 16, 2003 - Hi Everyone, I am again joining the message boards after awhile since things with me have not gone well. I am a 52 year old female from Honolulu, Hawaii. I have had type 2 diabetes for 24 years and was on medications for 12, then the other 12 years have been on insulin. I had a heart attack in December of 1998 and then was diagnosed with CHF, having many blockages for which nothing could be done initially.
     Then while travelling with my husband on August 10 to Cleveland, I had a heart attack on the airplane but was stabilized by the staff and two EMTs who were traveling onboard. I was taken to the Resurrection Medical Center in Chicago and had a double bypass. It failed after about 6 to 8 weeks.
     Now back in Honolulu, I have been put on medical management. Since then I have been to the emergency room quite a few times with heart attacks and the reason being water retention. I have been put on warfarin, Plavix, 81mg aspirin, 40mg Lasix twice a day and Aldactone since they are trying to wean me off Lasix and potassium. I also have to take metoprolol, digoxin, and other meds which really make me sick.
     I am also wondering if anyone has had problems with gallbladder sludge, and what the treatmet was for it or how was it was taken care of. I seem to have this problem. I have really lost a lot of weight - almost 40 lbs - and I feel better but not good. I was also wondering if anyone was able to get help with alternative medicine for their gallbladder. I see when on warfarin, one has to be very careful with herbs and diet. Has anyone ever got off this drug? I really would like to get some answers to my questions since I am truly frustrated witn my condition.
     Thank you so much for reading this and I hope you have a moment to reveiw this and give me your honest answers. I am also looking for a CHF specialist here in Honolulu but cannot find one; any suggestions? Thanks very much and God bless all of you as we look for a better day tomorrow! Aloha, Chris.

Tom S' February 17 reply to Christine's February 16, 2003 - Hi, I have been on and off warfarin, better known as Coumadin. Other than having a lot of trouble getting it regulated and having to endure frequent blood tests for the pro-time testing that goes with it, I am not really sure what your question is. With Coumadin use goes a certain number of dietary restrictions including avoiding foods high in vitamin K, such as cabbage and spinach, which counteracts the blood thinning aspects of the drug. I was on Coumadin for 4 years and off it it for a little over one year when my cardiologist discovered a prolapsed heart and a nice little clot down in the pocket of the prolapse. I have been back on Coumadin now for over a year and have bounced between 5mg a day to a current 10mg.
Jon's note: If vitamin K intake is kept consistent, those foods don't have to be avoided

Kathryn, February 17, 2003 - Hi Everyone, This is the first time that I've posted since last August but I do keep up with reading the posts every day. The reason I'm writing today is that I have a question about how often it is " normal" to see your cardiologist.
     I live in the middle of Nebraska and my doctor is in Lincoln, which is about 250 miles away. I had a mesh sock put on my heart May 9 of 2001. They replaced my pacemaker April of 2002 with a biventricular pacemaker, then just this last January 24 did an experimental procedure of AV optimization, where they reset your pacemaker while doing an echocardiogram. I'm on several different meds and watch my weight and sodium intake closely. I'm also a type II diabetic. My doctors tell me that I'm borderline class 3/class 4.
     What I don't understand is that they only have me come in every 3 to 6 months. If I have a visit the hospital they might have me come to Lincoln. They do have a satellite clinic, where a doctor comes here about every 2 to 3 weeks but they don't have me come too often and then you see whoever the doctor that day, and it is different every time unless you're lucky.
     This concern has come up because my mother just lost her fight with CHF and heart disease December 4, 2002. I have been told that I am get on the transplant list mainly due to my weight and other health factors. I would just like to make sure that I keep on top of this so that I can enjoy my family and grandsons as long as I can. Any feedback would help. Also, thank you Jon, for this site. I have told many about it including my doctors and nurses. I think about all of you often and I try to keep you all in my prayers. Kathryn.

Kathy, February 17, 2003 - Hi, Does anyone know what occupations an ex-special education teacher with CHF can get that have a flexible schedule? In 2 years, both my children will have moved out of the house and I will be experiencing empty nest syndrome. I would like to begin my future before this happens. Can anyone help?

Carole K, February 17, 2003 - Hi All, I have been posting on this site for the last 10 months or so because of my mother's CHF; she passed away in January. However, I think it could be my turn now. I went to my doctor last week. I had not seen him in almost a year because taking care of my mother came first. My blood pressure was high and my cholesterol was high, and I was of course overweight. The Dr. was quite frank with me (he was my mother's doctor too) and said that because my mother and father passed away from heart disease and I am a type 2 diabetic that I have an 85% chance of developing it myself.
     My question is, where do I start to help myself?! It just seems overwhelming to change my total life style so soon after my mother's death. Can any of you give me some pointers! Thanks, Carole.

Karin, February 17, 2003 - Hi, I need a CHF doc near Pittsburgh. My dad has cardic amyloidosis and CHF will end up killing him. I need to act soon to get help for him.

Christine's February 18 reply to Tom S' February 17, 2003 - Hi, Thanks for your reply to my post. I guess I did not clarify my question enough. I know about Coumadin therapy and the problems associated with it. I have been on it less than 4 months and am pretty much regulated.
     My concern is that I do a lot of alternative medicine and find that taking this medicine has a lot of restrictions so I have to be careful what I take in the way of herbs. I have gallbladder sludge and need to take a product called Stonefree, which apparently helps this condition, but due to the herb content, I have to be very careful. I was wondering if there is anyone out there that has treated gallbladder sludge this way. I used to take CoQ10 for my heart but cannot take this anymore because it will interact with the Coumadin, so to me it seems very frustrating. I do watch my diet for foods and vegetables with a high Vitamin K as I know again this will interact with the comudin. I eat foods in moderation and that has not been a problem. Thanks for your input.
Jon's note: CoQ10 has never actually been shown to interact with Coumadin, to my knowledge.

Tom S, February 18, 2003 - Hi, I thought you might be interested to know that on my hospital stay last week I was given a "new" drug via bolus and IV drip called Natrecor. I noticed Jon has it on his list.

Val, February 18, 2003 - Hi, I am new to this site but feel it may be God sent. I am 29 years old. I was diagnosed with CHF in June, 2002 and have had 3 very bad episodes since then, one putting me in the hospital in November of 2002 for 4 days. I have been on high blood pressure medication since 1997 and began a mild diuretic that year. This last year I have noticed a decline in my condition.
     In June of 2002 I had to go through the ER because I was swollen, could not breathe, and was having chest pains. They ran an IV Lasix and removed 8 lbs of fluid in about 4 hours. I began taking 20mg Lasix at home plus my previous dyazide. This seemed to work for awhile. Between June and August I lost about 20 lbs and reached a "dry weight." My doctor recommended trying to cut my Lasix in half when I reached this dry weight, and when I tried, it seemed everything again went haywire. I began gaining a lot of fluid and in September I had another big weight gain, causing me to be unable to breathe, etc. I was then put on more Lasix but it just didn't seem to work so I was switched to Demadex. This worked until November and again I gained about 15 lbs in 4 days. I was admitted into the hospital because my heart rate stayed around 140 while resting, for about 2 days. Because I have no medical insurance, and cannot get any because of medical conditions, I felt I was discharged because of inability to pay. I was given no diagnosis but was placed on a higher dose of Demadex and my blood pressure pill was increased to slow my heart rate down when needed. I was referred to a cardiologist and a pulmonary doctor but am unable to go because we cannot afford it. My family of 5 lives on 25,000 dollars a year. I am unable to work and have filed for disability. I am in the middle of my thirrd appeal. My doctor says I am definitely disabled.
     I obtained my records from the hospital and was shocked. No one had told me any of my diagnosis. An echocardiagram showed mitral valve and tricuspid valve regurgitation, and my right ventricle was enlarged. I had numerous doublets and triplets noted on my Holter monitor and at times even while on complete bed rest in the hospital my heart rate would go as high as 160. None of this was discussed with me. I was told I may need a TEE but we simply cannot afford it. I apologize for such a lengthy explanation but this is the first site I have found where I feel connected to others like me.
     I have no idea what my EF is. My main concern at the present is my chest pains, which I have daily, sometimes while sleeping. They are so intense and crushing that I literally double over and cry at times. My heart rate is not controlled at all. I have taken the maximum amount of blood pressure pills to slow it down and that in turn lowers my blood pressure to a point I cannot function. I have 3 children aged 10 and younger that I can hardly take care of anymore. I watch my sodium intake really well. I have even made charts to monitor it. I take my medication correctly but lately I have had to double up on my diuretics at least once a week to keep the fluid to minimal where I can at least tolerate it.
     My main concern lately is I am so tired all the time. I can sleep 12 to 14 hours at a time and still be completely exhausted. I have tried to explain how I feel to many friends and they do not seem to understand. I know there is something not quite right. I just feel worse and worse. The only accurate way I can describe my sleeping is I feel it is like a "drug induced" sleep. I actually cannot wake up in the morning. This scares me because I have small children and it is all I can do to take care of them.
     I am going to go back to my primary care doctor next week but I really feel his hands are tied as well because I need more tests done. Please reply. Is this terrible fatigue part of CHF? I really think I already know. I have a feeling that something is getting ready to happen anyway - like doom. I am not just sitting around waiting either. I really need help but how can you get medical help with no insurance and no money. I'm sorry if this sounds like a pity-party. I just want to know if there is someone else that has had these same feelings as I am having. Please respond. Thank you, Val.
Jon's note: The test you need is a BNP blood test. That will tell you if you actually have CHF right now. If you can't afford it, write (the manufacturer) of the test kit and ask for a freebie through your doctor

Robert, February 18, 2003 - Hi, I really love this forum! The site has been invaluable for me - a new CHFer - getting acclimated to a new life. After my diagnosis in late September, which resulted in a 10 day stay in intensive care, the diuresis of 30 liters of excess fluid, and the reconfiguration of my life, I think I have returned to the living. My EF has improved a bit from 15 to 20% but my left ventricle is not smaller than it was.
     Okay, here's the deal: some of the guidelines I have run across raise a few questions for me. Since I was released from the cardiac intesive care unit at UCLA medical center (a terrific team, by the way), I have seen my cardiologist twice. Once was a week after my release in mid-October and again in mid-December. In mid-December, my Coreg dose was upped from 3.125mg twice a day to 6.25mg twice a day, but I am reading here that Coreg doses can be increased every 2 weeks. I'm now fearful that I won't get to 50mg twice a day until my first year has passed and by then it seems, the chances of heart function returning to somewhere near normal is greatly diminished. Should I press my cardiologist on this or is this okay?
     Second, is it normal to experience hair loss with the drugs I am taking? I take Coreg, furosemide, lotensin, and protonis (they say for ulcers). Add to that a bit of Wellbutrin because I had smoked prior to diagnosis, even though it was hard sometimes! Anyhow, I feel like I'm shedding and I don't think I like it. I can have heart failure and still be vain, right?

Hal, February 18, 2003 - Hi gang, I hope all is well as can be expected and that this nasty winter isn't having too negative an effect on you and yours. I'm still stuck in the San Francisco Bay area where snow is never a problem but the rents are. I have been researching areas in the world where a single 54 year old man on disability might find something resembling an independant life. I've heard from Canadians and Mexicans and an Aussie gentleman. In Costa Rica my yearly disability income of $7,525 puts me in the lower middle class. I'm going there in November to look around. I would like to hear from any of you fine folks out there where one could "live" on $627 per month. When the county aid stops and MediCal kicks in the amount will be about $500 per month. Not working is bad enough but being a burden to my family is even worse. Rents start at $1000 per month here. Even if I found a roomie in the same boat and we put our two checks together we would have the small problem of eating. Wishing you all the very best and please write if you know of a nice inexpensive area in this country that I might enjoy my independence for the duration.

Kathy, February 18, 2003 - Hi, I was wondering if anyone here knows the sodium content of French Vanilla Cappuchino, the kind you get at a mini-mart from a dispenser. I had a can of General Mills French Vanilla, fat free, sugar free, but the sodium content is sky high so I threw it out. Failing knowing the sodium content, does anyone have a recipe? I am really struggling with sodium, and like my doctor says, "I think we inhale it, it's everywhere."

Karen K's February 18 reply to Christine's February 18, 2003 - Hi Christine, Your post bothers me, a lot. Who told you that you have gallbladder "sludge" and who prescribed the stone free? I did a quick Net search and it appears that stone free is a nonprescription medication. Does your cardiologist know you are taking this?
     In my opinion, you need to concern yourself primarily with the drugs prescribed by your doctor. If you want to take any supplements or over-the-counter meds, you should definitely check with your doctor. I take CoQ10 and my doctor is the one who okayed my taking it even though he doesn't necessarily agree it is of any benefit. The important thing is that he okayed my taking it. Karen K.

Joseph P, February 19, 2003 - Hi, I went for my monthly visit today and I was given an echo, blood test and the regular check from head to toe. I guess my getting better has come to a end or it is the 2-year aniversery of my stroke and an end to try to improve my condition. Anyway, my EF is up a little and there is no regression, so that is good. My one-month visits are going to 3 months with a phone visit every month. I am on Coumadin and if everything looks good on some of the other tests I will be taken off Coumadin for awhile.

Mary Lou's February 19 reply to Kathy's February 17, 2003 - Hi Kathy, How about something along the line of home tutoring? Your choice: Your home or theirs. Just a suggestion. Good luck, Mary Lou.

Joanne R's February 19 reply to Kathy's February 17, 2003 - Hi, I have been pleased with recipes from You might check it out. I assume you have already looked through the low sodium recipes here. muddyrds@hotmail.coma

Sherlene Husfeld, February 19, 2003 - Hi, My husband was diagnosed with CHF in July of last year with an EF of 15%. In October, a defibrillator and pacemaker were installed. He takes Coreg, Demadex and Lanoxin. He also takes CoQ10 (Q-jel), minerals, vitamin C and food supplements.
     We had a close friend who completely recovered from CHF (he was in the end stages and confined to his bed) by taking DMSO intraveneously. However, the doctor who gave it was in an automobile accident and didn't recover. Has anyone had any experiences with alternative medicine or DMSO? We are very well acquainted with DMSO and used it topically for over 25 years, having found out about it from a well known sports doctor in the Los Angeles area.

Lorraine, February 19, 2003 - Hi Jon, I haven't posted lately but still read them every day. I have just read about the low sodium cheese from Heluva Good Cheese and see that it is made with salt substitute - potassium chloride. My husband has to take lots of potassium because of his diuretics and the doctor told him not to use salt substitute because of the potassium chloride. I just thought I would mention this for those who are on potassium. My husband loves cheese and does eat the regular kind even though it has sodium. He will give up most anything other than his cheese. I hope you are doing better, Lorraine.

Richard K, February 19, 2003 - Hi, I'm looking for people with coronary artery stents to participate in a very short research study. If you would like to participate, please drop me an e-mail. Regards, Richard.

Mary, February 19, 2003 - Hello everyone, I just came across this site and am wondering if anyone would be willing to offer me advice. I am 26 years old and about 6 weeks ago began having palpitations for the first time. My doctor gave me 50mg of atenolol. I felt horrible but he told me to keep taking it. Three days later I requested to see him. He told me that I was fine and to not worry. On the way home I passed out.
     I ended up being diagnosed with third degree heart block and CHF. They tried to reverse the atenolol but it didn't help. After waiting one week they implanted a permanent pacemaker. I had a 24 hour monitor and my doctor said I had junctional arrhythmia. I'm now seeing a new doctor and am on 2.5mg Zebeta. This doctor isn't running any further tests to find the cause either.
     Like I said, this is all very sudden and I'm having trouble accepting that there is no cause. What do you think? Should I seek a third opinion?

Margaret D's February 19 reply to Val's February 18, 2003 - Hi Val, You definitely need a cardiologist! Call the local free clinic if you have one, and ask when the cardiologist comes. Schedule an appointment as soon as possible. The fatigue is indeed part of having CHF and it also is worse with beta-blockers like Coreg. Mine does not feel like I need some sleep or like exhaustion from some muscular activity like working out. Sometimes I feel like I am just too tired to take the next breath.
     As for the chest pain, keep in mind that not all chest pain is heart related. It could very well be something else like reflux. I also agree with Jon that what you need is a BNP blood test run. It isn't as expensive as many blood tests and it could definitely help in diagnosing if you are in failure. Please see a doc right away, and keep us posted.

Natalie K's February 20 reply to Hal's February 18, 2003 - Hi Hal, Do some research on Ozark, Arkansas. I saw a piece on tv about it and it sounded very pleasant and reasonable. You might start with climate info, then move to state economic statistics, and contact their Chamber of Commerce. Apparently they cultivate retirees, as do some nearby communities. It sounded very nice. Okay, I may have seen it on City Confidential but I imagine San Francisco has had a murder or two. Good luck and keep us posted. This is an interesting undertaking and may educate many of us.

Dan, February 20, 2003 - Hello, I am a male turning 60 years of age in March. I have had CHF and cardiomyopathy since 1986. I have been on disability since 1991. I have never had surgery on anything to do with my heart until last February when they placed a pacemaker/ICD in me after I had sudden cardiac arrest. Since I got my gallbladder out last October and wound up with fluid on the lungs, I have been in the hospital 3 more times, the last one last week with CHF. I went in the last time with belly problems so I had them looking into the belly problem and took all kinds of tests. The cardiologist said there is nothing more to do and the belly doc said the same thing.
     What I am wondering is with a 25% EF and a-fib, does this mean I will just have to deal the with belly? It does come and go every couple of days. I have had 5 or 6 cardioversions and it works for a day or two then goes back to a-fib. After reading some of these posts, my 25% EF doesn't sound so bad. I do get very weak and when that happens, I just stay at home and rest.
     Does this seem par for the course with some of you? Thanks for any help, Dan.

Cat, February 20, 2003 - Hi, My gynecologist/oncologist is doing extensive lower abdominal surgery and because I also have emphysema, I am really concerned about general anesthesia since I will have problems coming off the ventilator. I did have an epidural when I had a partial hysterectomy in 1995 but that exacerbated problems with DHF. My blood pressure was 70/45 for weeks afterwards, and my heart rate was 130 at rest. A nurse friend said that I could have been given meds to remedy the aforementioned, and I should really insist on the epidural for this procedure. If that's the case, should I insist on the epidural? I really need some input.

Patricia, February 20, 2003 - Hi, Thanks Jon, for this web site. I have CHF with an ejection fraction of 25 to 30%, cardiomyopathy, mitral valve regurgitation, and GERD. I am looking for a CHF specialist in Baton Rouge,Louisiana. Patricia.

Carol, February 20, 2003 - Hi all, I was wondering if anyone knows why dypsnea seems to be much worse in the evening than in the daytime. I occasionally experience it in the daytime if I try to hurry or over exert but, even mild exertion in the evening seems to be able to bring it on although it doesn't always. The evening dyspnea is frequent enough that it interferes with any evening activities other than quiet reading, chatting, watching tv, etc.

Tom S' February 20 reply to Carol's February 20, 2003 - Hi, It sounds like you answered your own question. ;-) If your shortness of breath is related to CHF, then it is directly related to the fatigue level of your body. I know I ended up in the hospital recently for overdoing and ended up with a lot of fluid buildup on my lungs. The old heart can't pump out the fluid fast enough so it collects in different parts of the body and lungs, and causes SOB.

Carol G's February 21 reply to Tom S' February 20, 2003 - Thanks Tom. This is the second time I've sent this message. I'm apparently doing something wrong! I should have supposed it was fatigue although I usually feel quite good even in the evenings and seldom am tired unless I've been unusually physically active throughout the day. I do have CHF, take a bunch of meds, and am on a low sodium diet, etc. I walk for exercise (on a treadmill when the weather's bad) but have a difficult time doing much in the evening. Thanks again and take care.

Lisa Z's February 21 reply to Karin's February 17, 2003 - Hi Karin, I would recommend Dr. Samer Azouz. He is my dad's cardiologist and has an office in Butler, Pennsylvania and one at Allegheny General Hospital in Pittsburgh. He has been absolutely wonderful with us, although I don't think he is a CHF specialist. His phone numbers are (724) 282-8910 in Butler and (412) 321-0680. His practice is called Cardiology Associates, Inc., and all of the doctors are very good. My father has seen many of them. Best of luck to you.

Tracey C, February 22, 2003 - Hi Jon, I am wondering if you have an explanation for this. I normally stick to around 500 to 700mg of sodium per day and I've noticed that if I increase this just a bit to say 1000 to 1500mg daily, I urinate more during the day and feel a bit better. Otherwise, it seems that I don't go as much. I'm wondering if there's actually a negative to eating so little sodium. My EF isn't bad at 45% and my blood pressure is always about 90/50 to 90/60. Any input would be great. Also, Jon, how are you doing with the Coreg withdrawal?

Jon's February 22 reply to Tracey C's February 22, 2003 - Hi, I can't begin to tell you how difficult it is right now for me to type so all my responses will be so short as to be incomplete. The Coreg story must wait but I'll get to it as soon as I can. Your diastolic blood pressure is awfully low; if it were me, I'd ask my heart doc why so low? The sodium question depends on a combination of diet, exercise (sodium is involved in muscle contraction), fluid intake, electrolyte balance, diuretic therapy, heart class with all that entails, and more. You may need to reconsider your diuretic therapy with your heart doc. If your individual situation is not severe enough to warrant a severe sodium restriction, which 500mg daily is, then the higher intake level should be fine. Jon.

Joanne R's February 22 reply to Val's February 18, 2003 - Hi Val, I just want to strongly encourage you to take Jon's advice about contacting the manufacturer of the test you need. I have been encouraged by my cardiologist to take the same route if my insurance carrier balks. Earlier on in my adventures in CHF land, I had an experience similar to yours of sleeping some 12 hours a day and my cardiologist said, "Good, that doesn't bother me at all." This is cold comfort when you are raising children, but at least it seems to be a common occurrance. I'm told it beats the insomnia some have. Be well, Joanne.

Linda O, February 22, 2003 - Hi, I read the posts daily but have not written in awhile. I saw my cardiologist this week and she gave me the good news that my heart was not as large and my mitral valve was not leaking as much - my first good news in 10 years. She thought maybe it was God and His hand. I certainly talk to Him about it often. I wonder if anyone on the board has the pacemaker and the two wire fib that goes into the heart. I would like to know the pros and cons before I go to discuss it with the doctor. Linda O, age 63 with EF 20 to 25%.

Catherine L, February 22, 2003 - Hi, Can anyone recommend an antidepressant or anti-anxiety drug that doesn't lower blood pressure? I think I need to be on something. I have a problem with low blood pressure. I am now on 2.5mg Altace and 25mg Toprol-XL. My cardiologist will be increasing the heart meds next week and my heart health has to take precedence over my depression at this point.
     After having major abdominal surgery last month for arcuate ligament syndrome, I just found out I have Dupuytren's syndrome in my right hand (nodules that can cause your fingers to go clawlike). The nodule and ridges literally just popped up last month, and hurts sometimes. Does anyone else here ever feel like it's one thing after another with their bodies breaking down? I can't believe this!
     I hope everyone is hanging in there. Let's not allow our health problems to define who we are! I will fight all this stuff and anything else that's dished out to me, Catherine.

Joseph P's February 24 reply to Linda O's February 22, 2003 - Hi Linda, I have a 2-wire ICD and it works great. Now that it has been implanted for more than a year I don't realize that it is even there. I would make an appointment with a EP doc if one is in your area, to determine if you need a pacemaker or ICD. Good luck and God bless.

Betty's February 24 reply to Linda O's February 22, 2003 - Hi Linda, In answer to your question on defibrillator and pacemakerm I have had the 2-wire version for one year and really think it has saved my life. It is a very simple surgery and I would highly recommend your getting it if your doc recommends it.
     I am new to this site and want to say I have enjoyed reading about everybody. I have CHF with my heart pumping at 20%. I am doing quite well but tire easily and have pressure of the chest (I also have acid reflux). Betty.

Angie's February 24 reply to Robert's February 18, 2003 - Hi Robert, I wouldn't worry about not getting to 50mg Coreg within a year. I started out on 3.125mg twice a day for about 9 months, then went to 6.25mg twice daily for 6 months, and have been taking 12.5mg twice daily for a year. Guess what? When I went into the CCU 4/01, my EF was 15%. I had an echo 10/02 and my EF was 55%! Trust your doctor. He should know what's best for your condition, body type, etc. I hope that I've helped; good luck and God bless you.

Joe S' February 24 reply to Catherine L's February 22, 2003 - Hi Catherine, I am having similar problems. First the doc told me my heart was completely healed after surgery, so here are your anti-depression meds. He claims I have PTDD. I asked him where the trauma came from he said the surgery. Oh well, at least I'm well physically. Good luck with your situation, Joe S.

Dan, February 24, 2003 - Hi everyone, I have cardiomyopathy and atrial fib. I had some V-tach but still no ICD. My EF is 49%. Last week they did my second ablation, The first one was in October of 2001. I e-mailed Jon the other night. My big thing is faith and when I get sick my faith goes way way down so that's what I'm working on. Any suggestions are great. I'm a Christian but sure don't act like it most of the time so I'm really looking for Christian friends to talk to that know how I feel and can tell me what they did to get better. Thanks, Dan.

Allen C, February 24, 2003 - Hi, I just wanted to drop a note here and say that it's 6 years since I went into the hospital with CHF and A-fib. I'm doing pretty well right now and am only inconvenienced by my protime tests. I pray for you all and hope things go well for you. Jon, thanks for this site. It was an inspiration to me when I first was diagnosed. Thanks, Allen.

Davida's February 24 reply to Tracey C's February 22, 2003 - Hi Tracey, I have found that sometimes our bodies compensate for losses. Maybe your body holds on to the sodium when you restrict it so low. In an effort to hold on to sodium it also has to hold onto fluid. A slight increase in sodium may bring balance to your body and encourage it to function more efficiently, thus releasing excess fluid. If you weigh yourself on a regular basis and keep an eye on fluid retention, a slightly higher sodium amount probably won't hurt. My husband's EF is 55% and he has moderate sodium intake, meaning we don't add salt and we limit high sodium foods.

Noel, February 25, 2003 - Hi all, Thanks Jon, for all the work you have done for all of us CHFers. I have recently read of a Dr. James Young at the Cleveland Clinic has developed a proceedure in which he takes a sample of blood from a CHF patient, puts it in a machine that stresses the sample with heat (108 degrees F), zaps it with ultraviolet light and then mixes in a little ozone gas. The sample is then injected back into the patient. The hope is that the blood sample wil trick the patients immune system into fighting the heart destroying disease.
     In a initial 73 patient pilot study only one death occured among patients given 6 months of the so called Vasogen treatment compared with 7 deaths among patients given dummy shots. The Cleveland Clinic is about to study 2,000 patients to prove if the therapy works. If anyone has any more information on this I would appreciate it being posted.
     I would also like to hear more about gene therapy where ones own stem cells are used to try to get the weakened heart to regenerate new muscle cells. Thanks and may God continue to bless each of you.

Jon's February 25 reply to Noel's February 25, 2003 - Hi Noel, Vasogen got the okay to start a phase 3 trial last year for this. The pilot study was too small to draw any conclusions from and the crash and burn record of other inflammatory fighting therapies for heart failure so far has kept public expectations down, especially since no one knows what the true role or cause of inflammation in heart failure -not heart disease - is. Please note that only CHFers with an EF under 30% will be in the trial.
     The process sounds much like the plasmapheresis sometimes used in heart transplant patients. Dr. Young did not develop the procedure but will be leading the current, larger trial as I understand it. Jon.

Pat, February 25, 2003 - Hi, Have any of you been diagnosed with chemical poisoning as a result of industrial chemicals? What are your symptoms and how were you treated? My husband recently died after an auto accident which punctured his lung. He suffered from diabetes, CHF, renal failure and respiratory problems. I'm wondering if his problems were directly related to the chemicals he had been exposed to for the past 18 years. He was nearly 70 lbs heavier when he died than he was less than a year before, due to fluid retention. I would love to chat with you if you suffer from similiar problems. I will reply to all who write. Thank you, Pat.

Lisa M, February 25, 2003 - Hi again, I wrote near the middle of this month regarding having cardiomyopathy and having a pacemaker put in on February 1. Since then I have had my pacemaker checked and now it shows I am in a-fib, so my family doctor has started me on Coumadin. My cardiologist has been out of the country and will be returning Monday. Can anyone tell me what to expect now, with the a-fib; what they are going to do to fix it?
     My worst fear is that when they were explaining to me about getting the pacemaker, the cardiologist said this may put you into a-fib and we do not want that happening! Now I sit here and wonder what that meant.

Joseph P's February 26 reply to Lisa M's February 25, 2003 - Hi Lisa, Did you have a pacemaker or an ICD implanted? I have an ICD and a-fib was there already for me. The next thing they did was an ablation to stop my a-fib, which worked fine. Now everything seems to be in order and I feel fine. Did you have a EP doc determine if you need a pacemaker or an ICD? God bless, Joseph P.

Katherine H's February 26 reply to Lisa M's February 25, 2003 - Hi Lisa, There are all kinds of things that can be done with pacemakers, depending on the kind and model. I would think your cardiologist would have a pacing nurse on staff and you should be in contact with that person about your a-fib.

Mel G, February 26, 2003 - Hi, Do most of you take your blood pressure and heart rate on a daily basis, along with your weight? I am going to my cardio doc in a few days for a 4-month check-up, the longest I've ever been between them. I've been feeling quite well during the last 4 months and don't have any complaints. I'm starting to worry that he'll be concerned about my blood pressure and my heart rate, which have both been steadily creeping upward. I don't think they are at alarming levels, but the trend is a bit worrying. I've been at the target dose for all my meds for more than 6 months. Does anyone have any BP or heart rate stories to relate?
Jon's note: After quite awhile on Coreg, blood pressure goes slowly up in many CHFers

Betty, February 26, 2003 - Hi, What is a-fib? I had an ICD put in and my heart stopped working on its own so they paced me. Then they put in the ICD and my heart started working later on its own. I am doing great now. I have the 3-wire pacemaker. My heart doc thinks this will improve my life style. I'm going for it - anything to make life better. Thanks, Betty.

Margaret D's February 27 reply to Mel G's February 26, 2003 - Hi Mel, It's interesting to read about your BP experience. That question is already on my list to ask my cardio doc in 2 weeks. My pressure now is higher than it was before I was diagnosed with CHF and IDCM. I used to average about 100/70 and now I'm about 120/70. I've been on Coreg 12.5mg twice a day and Lisinopril 2.5mg for about 8 months. My heart rate still averages about 54, so I bet he won't go up on the Coreg but may go back to 5mg of Lisinopril. Jon, do you know why the BP would go up? mdavis10@tampabay.rr.coms
Jon's note: Not really, but as usual we'll eventually see some doctor making this as "new" finding despite we patients having known it for years. <g>

John K, February 27, 2003 - Hi, I recently convinced my friend to let me take his blood pressure and I noticed something strange: On the low side the main beat will kick out around 80 but I can still hear a very slight beat all the way down to 60, it doesn't do this every time I take his pressure although sometimes the beat will kick completely out at 80. His heart beat sounds great and he says he never has chest pain or lightheadedness. He is very active, he skateboards and plays basketball a lot and is in great shape. Does anybody know what might be causing this?

Jamie, February 27, 2003 - Hi everyone, Thank goodness for this web site. I was wondering why after a good day with energy and accomplishing much that the next day is so tiring. Is it that the heart simply gets tired? Maybe the muscles need more blood and there is less to go around? Or maybe since we are so much weaker that we feel it more? I know pacing yourself is the key, but I was wandering why this happens.

Cathy, February 27, 2003 - Hi, Has anyone had experience with Gemfibrozil? I have been taking it but it upsets my stomach. It certainly helps the triglyceride levels but there must be something else to try or add another pill for the upset stomach. I have been using Jon's Place 4 years. It is wonderful and has been a great help.

Valerie R, February 27, 2003 - Hi, I got a cold and went into Club Med November 29, the first time I'd been back in 7 years. They changed my meds, put me on a stricter low-sodium diet and gave me an ICD/pacemaker. I was okay for about 7 weeks and then got all sorts of CHF symptoms, especially SOB and a total inability to lie down or even prop up on pillows many, many nights. I had been perfectly compensated prior to this.
     The doctor and I both feel that something is wrong. Perhaps because we stopped Acupril due to a bad cough and went on Coreg and Cozaar, or perhaps the pacemaker therapy? Today I had a pacer check and was told the wire to my left ventricle is not working and probably never had, although the surgeon informed my cardiologist that it was. He also turned off the pacing of my right ventricle to see if that was causing ill effects. I know that if this turns out not to be the case, the surgeon is going to want to go back in and try that left lead again. I'm interested in any input. Valerie.

Joseph P's February 28 reply to Valerie R's February 27, 2003 - Hi, I have been in your shoes feeling great, then the bottom falling out of things. I think what happened to me is that my body compensated for a long period of time, covering everything that was going wrong, then all of a sudden it finally gave up and I found out that everything was wrong or not compensated any more.

Tom S' February 28 reply to Valerie R's February 27, 2003 - Hi, Other than a pacemaker I find it strange that we both went 7 years before a return to Club Med. Mine occured in early February and came on the heels of increasingly worsening SOB and fluid on the lungs. A-fib was immediately noted in the ER and I was on a cardiac monitoring floor for several days.
     After it was determined there was little or nothing they could do about my a-fib, and upon completion of a round of Natrecor I was moved to a medical floor where inhalation therapy was done every few hours. I have been extremely fatigued since, although most of the fluid is out of my lungs. I am now on inhalers of Azmacort and Combivent every 8 hours. I was told that my lungs have suffered damage and I now have emphysema and a form of asthma on top of an EF of 15% with CHF. Go figure. If one thing won't kill you something else will try. Good luck to ya.

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 Jon C.

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