The paperwork never ends The Archives
March 1-15, 2003 Archive Index CHFpatients.com

David Wilson's 3-1 reply to Cathy's 2-27     gemfibrozil experience
 
Valerie R's 3-1 reply to Tom S' 2-28     thanks
 
Dorothy Powell 3-2     some very good news and more
 
Marlito 3-2     diuretic therapy questions
 
Sharon E 3-3     cancer and CABG questions
 
Pam E 3-3     update and chat room question
 
Joe S 3-3     Xanax questions
 
Carol 3-3     seek others with a too-high ejection fraction
 
Dan R 3-3     do I need a second opinion?
 
Emil's 3-3 reply to Carol's 3-3     Toprol-XL experience
 
Tony T 3-3     logging events and more
 
Amelia 3-4     seek experiences with surgery and EF
 
Vicki S 3-4     glucosamine chondroiton question
 
Mike W's 3-4 reply to Joe S' 3-3     Xanax
 
Dorothy Powell 3-4     address correction & more
 
Natalia's 3-4 reply to Marlito's 3-2     also seek heart transplant experiences
 
Kathy H 3-4     seek advice on vomiting and nausea
 
William Stoll 3-4     does anyone have jaw/eating/swallowing pain?
 
Henry T 3-5     what is that weird beeping?!
 
Natalia's 3-5 reply to Kathy H's 3-4     anti-nausea suggestion
 
Tom S 3-5     supplemental oxygen experience
 
Tracey C 3-5     ER experience & cruise ship questions
 
Myrtle C's 3-6 reply to Joe S' 3-3     drug promotion
 
Myrtle C 3-6     seek supplement information
 
Hal 3-6     thanks for info
 
Natalia 3-6     seek heart transplant experiences
 
Valerie R's 3-6 reply to Tom S' 3-5     I also have a severe unexplained pain in back
 
Ben B 3-7     going back to work after disability
 
Jon 3-7     just an update
 
Dave K's 3-7 reply to Natalia's 3-5     that seems odd
 
Natalia's 3-7 reply to Valerie's 3-6     back pain
 
Tom's 3-8 reply to Kathy H's 3-4     nausea and fluid retention
 
Bob 3-8     seek CHF doc in Springfield, Missouri
 
C Kestner's 3-8 reply to Dan H's 3-3     my experience & a question
 
Lorraine's 3-8 reply to Tom's 3-8     meds question
 
Kathleen 3-9     seek support
 
Tom S 3-9     unsettling doctor's office experience
 
Giorg 3-9     EF versus Vo2max
 
Jackie L 3-9     seek information on surgery
 
Brenda H 3-10     what should I ask my new cardiologist?  
 
Billy 3-10     I could sure use some answers
 
Tom P's 3-10 reply to Lorraine's 3-8     zaroxolyn, Lasix, sodium & more
 
Gino's 3-10 reply to Marlito's 3-2     talk to your cardiologist immediately
 
Gino's 3-10 reply to Giorg's 3-9     recovering Vo2
 
Marlito's 3-11 reply to Gino's 3-10     thanks and update
 
Jon 3-14     sorry about the confusion
 
Jon 3-15     back up now
 


David Wilson's March 1 reply to Cathy's February 27, 2003 - Hi, I took Lopid (gemfibrozil) a couple of years ago. It made me very dizzy so I went off it and the doc put me on Baycol, which was taken off the market. I refuse to take any statin drugs now. My triglicerides are lower naturally because I had undiagnosed diabetes. If I keep my blood sugar under control, my triglicerides go down. I control my diabetes with diet and exercise. I don't like to take additional medicine because it seems to give me problems.
     I take Coreg, prinivil, allopurinal, digoxin, alasix, and spironolactone. That is enough for me. I think additional medicine goofs me up. I don't trust any statin drugs at all. Diet and exercise can control cholesterol, I think. davybwilson@webtv.net


Valerie R's March 1 reply to Tom S' February 28, 2003 - Hi Tom, I have an EF of 15% also. Joseph, Thanks for your input. Valerie R. vgrogers@aol.com


Dorothy Powell, March 2, 2003 - Hi, The past week has been one learning experience after another for me. I had never had a gall bladder attack before but knew I was really sick! My thought was "Good grief, what now" as I dialed 911. I didn't think my problem was heart-related and was most relieved when it wasn't. I spent 3 days in the local hospital until my pancreatitis was under control. I was in Lubbock Monday through Thursday.
     I was diagnosed with CHF and an ejection fraction of 24% in April, 2001 and the cardiologist ordered an ultrasound to determine my current status. I was amazed and thrilled with the assessment of 53 to 54% ejection fraction. The cardiologist told me in 2001 that I was in CHF and was "a perfect heart transplant candidate." I assured him that option was at the very bottom of my list of possibilities! I had hardly processed the CHF diagnosis, much less the idea of a heart transplant!
     Jon, I do want to thank you for this site and to all who shared their experiences as I rounded the learning curve full throttle! It helped immensely that others had survived; knowing that life after CHF was a possibility. Thanks to you all, I have taken my meds faithfully, put the salt shaker in the cabinet, and read labels to avoid as much sodium as possible. I have also lost 20 pounds, I assume in part because of the restricted sodium. I am thankful to God that I have wonderful friends and family, good insurance coverage, can exercise, and was able to take Disability retirement.
     I am hopeful that sharing my positive results will be encouraging to each of you. I do know that God is in control and I will continue taking my meds (reduced per doctor's orders), exercising, and continue my low-sodium diet. May God bless each of you, Dorothy. dpowell806@nts-online.com


Marlito, March 2, 2003 - Hi, Just to share some experience with diuresis: I have had CHF and idiopathic cardiomyopathy for about 5 to 7 years. I had mitral valve replacement and an ICD implanted in July of 2002. My medications include amiodarone, spironolactone, Lasix, ramipril, and CoQ10 among other herbal preparations. I started Coreg in August of 2002 but had stopped due to intensifying CHF symptoms including edema. After losing the retained fluids, I tried Coreg again in October of 2002 and by December of 2002 I had gained 28 lbs. I increased my Lasix to 240mg and spironolactone to 100mg but couldn't shake off the fluids.
     Last February 25, my cardiologist added a half dose of Zaroxylen and I lost one lb overnight. Then he shifted the diuretic to Bumex at 6mg and an occasional half-dose of Zaroxylen: I lost 8 lbs overnight and am losing about 2 to 3 lbs per day up to now with just Bumex. However, I had to suffer from general body malaise, muscles and skin aching all over, and hard leg cramps in various locations.
     My blood work yesterday shows that my potassium is slightly elevated, but my sodium and chloride levels are slightly low. The worrisome part is that my BUN is 2 to 3 times the normal value and my creatinine is also above normal. My SGOT and SGPT are also slightly above normal. Has anybody experienced such body aches and cramps with strong diuresis? What can I do to check the electrolyte imbalance and improve kidney and lever functions? mcardenas@pacific.net.ph


Sharon E, March 3, 2003 - Hi, My husband has a 90% blockage in one major artery and 60% in two others. He was denied bypass when it was discovered he also has kidney cancer in his left kidney, about an 8cc solid mass tumor. Has anyone else been in this situation? What can be done? Sharon. sharonemerson@warpnet.net


Pam E, March 3, 2003 - Hi Jon, Long time, no talk too. I go for my yearly echo and GHPS (MUGA) tomorrow. Results should be good since I feel fine. My question is, does the chat still occur and if so when? Pam E from Australia. pam_gptk@kooee.com.au
 
Jon's note: I don't have a chat room anymore. The free ones stink and the commercial ones are way out of my price range


Joe S, March 3, 2003 - Hi, I am getting mad and confused. One month ago my cardiologist said I was completely well from my surgery, then he sent the nurse in to inform me that I was suffering from depression from the surgery and that this was common after major surgery and I should take a drug for it. My doctor agreed and gave me 2 free drugs which I tried but then I couldn't function or stay awake.
     Our God answered my prayer though, and put me into contact with a man who had gone throught the exact same experience. He suggested a psychologist and I made an appointment for next Wedneday. Since then, my ankles are swollen more then they ever have been, I can't stay awake, and I can't function most of the time. The only new med I am taking is Xanax at 0.25mg. I tried to get some infomation on this Xanax , which only says take when needed. What do they mean, when needed? Does anyone have any advice? Help, Joe S. jes@gbis.com


Carol, March 3, 2003 - Hi, I am interested in knowing if there is anyone else out there with a high ejection fraction? Mine is 85%. Most of the information is written about heart failure due to the heart not pumping enough blood with each beat. Can anyone educate me about the significance of a hyperdynamic left ventricle that pumps out too much blood?
     I am new to these topics. I didn't know I had any heart problems until I began feeling a little short of breath and a bit of pressure in my chest in the last few months. Years of fatigue and no stamina I attributed to subclinical hypothyroidism, even though a trial of thyroid meds didn't relieve it.
     Three weeks ago a stress echo was abnormal. A full echocardiogram and angiogram have shown no CAD or valve problems, but this hyperdynamic LV and high ejection fraction. My doctor wants me to start on a beta-blocker (Toprol-XL) but I think I am still in denial. Anyway, I would like to hear from anyone else with an abnormally high EF. Also, if you take Toprol-XL what has your experience been? I am worried about getting even more fatigued than I already am. Thanks for sharing your ideas. Carol. caroledmisten@msn.com


Dan R, March 3, 2003 - Hi Folks, I am wondering if I need a second opinon. I have had CHF and CM for 20 years. I also had a pacemaker/ICD put in February of last year. I went in the hospital in October with a bad belly problem and they found that my gallbladder had to come out, so I had that done. They had to take me off the Coumadin for the surgury and had a heck of a time getting it back to normal afterward.
     I had CHF after the surgury and have been back to the hospital 3 more times since October of last year! I go in with this bellyache and shortness of breath, and all they do is give me some IV Lasix and send me home. This last time I told my doctor I need to really know what to do before I leave here. He said your EF is 25%, so the only thing I can suggest is a heart transplant. Well I'm not ready for that if maybe my meds can be modified.
     I take 120mg Lasix,12.5mg captopril, 40mg Pepcid, 3mg Coumadin, 300mg allopurinol, and 50mg Coreg. I was on amiodarone but since I'm in a-fib and 3 cardioversions didn't help, he took me off it. Thanks in advance for any help you can give me. Dan. dryan6659@aol.com
 
Jon's note: You need a second opinion!


Emil's March 3 reply to Carol's March 3, 2003 - Hi, I'm taking 200mg Toprol-XL daily. The doc started me at 25mg about 2 years ago. I think he could have raised the dosee a lot faster, but I don't argue with the doc. Remember that advice. Any fatigue I have, I think is related to my low EF and not the meds. I hope this helps; I wish I could tell you more. spaeth@ruralnet2.com


Tony T, March 3, 2003 - Hi, I haven't posted in a long time. I have CHF, a-fib and hypertension. Four years ago my symptoms started to get significantly worse. I started a log and started taking my blood pressure approximately 10 times per day. Presently, I've got about 12,000 readings and all kinds of notes about palpitations and arrhythmias and their causes.
     I've found out that a lot of my symptoms were caused by complex combinations of meds, allergies, foods and pollution. Many of these heart-condition irritants could be caused by either touch, ingestion, or inhalation. Smoke, for instance, causes a problem whether it touches my skin or if I breath it in. Certain clothes, bedding, or dyes can make my condition worse. I've also switched to eating organic salad.
     I've found out that a lot of my problems were made worse by the combinations and dose of the drugs prescribed for me. Also, if I don't separate my meds by one to two hours, my symptoms can get worse. I also need to restrict my eating of anything with calcium to 2 hours from when I take certain meds. My biggest surprise was about Lanoxin. I found out that 0.25mg of Lanoxin caused my other meds not to work well. It took me about a year to slowly cut my dose of Lanoxin from 0.25mg to 0.125mg. At 0.125mg, my other meds work significantly better. I suffered through a slow, painful, withdrawal, because of an addictive interaction between Lanoxin and verapamil.
     My next challenge is to find out if my complex arrhythmia problems are actually being made worse by some of the remaining medicines, or their doses. Because of the complex combinations of meds, foods, allergens, pollutants, chemicals, foods, clothing, dyes and materials, it may take a little while to find out, but my 4 years of records is a huge, invaluable help.
     Each of us is different and what works for one may not work for another, but those who are willing might be interested in starting a daily log of their own symptoms and causes. If your problems are caused, in part, by complex combinations like mine are, you'll need a lot of patience. However, you could experience significant rewards, like I did. t0nyt@yahoo.com


Amelia, March 4, 2003 - Hi everyone, I had a terrible, painful episode of a gallbladder attack and went into the ER February 22. After taking me off Coumadin, and doing lots and lots of tests, my cardiologist, surgeon, and internist believed my liver was the problem since the lab work was off the wall. I was operated on February 27th and got home March 1.
     My EF dropped from 40 as of 3 months ago to 20% during surgery. My question is, has anyone had this problem? Will it come back up and is it normal to drop because of surgery? I was in the operating room for 1-1/2 hours and in recovery 2 hours. Wishing you all the best and thanks for any info, Amelia. amelias@erols.com


Vicki S, March 4, 2003 - Hi Jon, Do you know of any reason why I should not take glucosamine chondroitin? Is it in any way harmful to the heart or does it cause any reaction with any of my existing heart meds: Coreg, Digoxin, Zestril? I was diagnosed with cardiomyopathy 2 years ago. I am having neck and shoulder problems, and some of these are related to arthritis. Since I can't take the anti-inflammatory drugs for arthritis I am desperate to find something that will help. I have heard that glucosamine chondroitin is really good. I would appreciate any info. Thanks, Vicki. Snevetsii@aol.com
 
Jon's note: As far as I know it's fine. Do not buy the cheaper brands - an FDA sampling showed that more expensive brands were the only ones that actually contained what they said they contained


Mike W's March 4 reply to Joe S' March 3, 2003 - Hi Joe, Xanax is the current tranquilizer of choice. It has taken the place of Valium as the most prescribed tranquilizer and is very similar in chemical makeup. "As needed" means when you feel stressed out and anxious. 0.25mg is the smallest dose available so you're not getting some big dose. You should ask the prescribing doctor about it and you can find tons of info about it on the Net. Do a search on google.com and you will find more info about it than you could ever read. Regards, Mike Wafkowski. mikeyw@sohogurus.net


Dorothy Powell, March 4, 2003 - Hi All, My apologies - I gave you the wrong address. I have discontinued using NTS and am back with AOL. I should have told you I am a 55 year old female. Thanks, Dorothy. PS. I pray for all of us frequently and truly wish each of you the very best. DPowell806@aol.com


Natalia's March 4 reply to Marlito's March 2, 2003 - Hi, I was inpatient at the hospital while I lost all my extra fluid. My problem was that my liver was so inflamed from the extra fluid in my abdominal area that it couldn't even metabolize the meds, including Lasix and spironalactone. In the hospital I received Lasix by IV and it saved my life. I went in 2/10/03 at 130 pounds and today I weigh 107, and the docs say I'm finally at my dry weight. I am 5 feet 2 inches tall.
     They don't care that I haven't weighed that little since I was 14 years old! I'm very sick however, and continue inside with IV milrinone keeping me alive. I'm awaiting a new heart at the Duke University Medical Center in North Caroline. If anyone has anything to share about heart transplant treatment, please let me know. I'm dying to speak or chat with a survivor. I'm 27 years old and once upon a time full of energy and plans. Life is much simpler and slower now. God bless, Natalia. NataliaLaMa@compuserv.com


Kathy H, March 4, 2003 - Hi people, Can anyone give me some suggestions for dealing with near constant waves of nausea? I know it is a sign of digitalis toxicity, but my dig levels are fine. I have episodes of nausea, dry heaves, and vomiting 10 to 20 times a day, and nothing seems to help. I've tried eating with meds, separating the meds, having cough drops or gum, ambesol to numb my palate, having small sips of ginger ale. I don't want to take compazine because that knocks me out. This is getting old fast. kathyh@linkny.com
 
Jon's note: This is potentially very dangerous - please see your doctor immediately


William Stoll, March 4, 2003 - Hi, I too am suffering from neck and shoulder pain either from artritis or all the meds I am on for my heart. I am wondering if anyone is also having jaw pain and difficulty eating and swallowing. I think it's coming from taking Coreg, but when I question my doctors on it they just seem to brush it off. It gets so bad I can't eat or swallow. Is anybody else having this problem? sky@wi.net


Henry T, March 5, 2003 - Hi, I can't remember when I last posted. Five years ago I was diagnosed with IDCM and heart failure. Shortly afterward I received an ICD for arrhythmia. Currently I am symptom-free and my last echo showed that my heart was nearly back to normal size - better living through chemistry!
     So one day last week I was working, and mid-morning I hear this far off beeping that lasts for a few seconds and stops. I check the smoke dectors: nothing. I look in the microwave to see if anything was forgotten: nothing. I think I must be hearing things until late in the afternoon when the beeps start up again. This time I check my cell phone, the various VCR/DVD timers and again nothing. Around three in the morning I wake up to the same beeps, this time very loud and very close.
     Only then do I realize that what I've been hearing is coming from my ICD! This morning I had my regular check-up and my ICD tech says, "Oh, that's the signal that it's time to replace your unit. Didn't I ever tell you that?" Well, no you didn't. So I guess I'll go home, swallow two D cell batteries and I'll call you in the morning! Actually, I'll have a new unit in before the end of the month and if there's anything remarkable to report, I'll write again. Take care and live well. hrtick@aol.com


Natalia's March 5 reply to Kathy H's March 4, 2003 - Hi Kathy, For nausea ask your doctor about Ativan. Trick is you have to take it at the first wave of nausea. I had severe nausea from too much fluid in my belly and an enlarged liver. Once that was dealt with, the nausea went away. It's very important that you insist this is a major problem to the doctors. Not eating will only lead to physical starvation (as it did me) and you may not even be aware of it! WIlliam: I have had jaw pain for a couple of days now. While it could be a side effect mine may be more due to a sinus infection. I take Tylenol and grin and beaar it. However, has the dentist ever told you you might grind your teeth? I do and that causes the pain too. The neck and shoulder pain could be related but one thing I've learned up to now is that having been at bedrest for a good long time made my muscles all but disappear and now as they repair themselves they ache. Good luck. NataliaLaMa@compuserv.com
 
Jon's note: The prescribing info for Ativan says: "In patients where gastrointestinal or cardiovascular disorders coexist with anxiety, it should be noted that lorazepam has not been shown to be of significant benefit in treating the gastrointestinal or cardiovascular component." It is a drug that reduces anxiety generally but is not an actual anti-nausea med


Tom S, March 5, 2003 - Hi, For just about as long as I have suffered from the symptoms of CHF, one that always perplexed me and was largely unexplained by my cardiologists and MDs, were muscle aches and severe pains in the area of my kidneys. My assertions that I was suffering pain and even swelling in the lower right quadrant of my back went largely ignored by my medical professionals.
     Despite the lack of response, I was pretty certain it was something organic and related to the CHF. I think I have pretty well narrowed it down to what causes the problem. Simply put, I believe it is caused by simple oxygen starvation. A recent trip to the hopsital more or less proved that point.
     Generally when I suffered such pains in my kidneys and muscular pains, my urine would be a bright orange and have a definite odor to it. Recently when I was in the hospital and on oxygen (my O2 saturation was in the mid to high 80s without it) these pains slowly went away and the color of my urine change to almost clear. Almost immediately after leaving the hospital. my muscle and kidney pains started again, and the color of my urine returned to an orange color with the accompanying odor.
     Because of the fact that a blood gas is required for Medicare to pay for supplemental oxygen I did not qualify. That was because it was done at the hospital, after being off supplemental oxygen for only a few minutes when the blood was drawn. Knowing the way I feel with aches, pains and a low grade of nausea and dizziness most of the time, I knew my sats were a lot lower than that. I figured somewhere in the low 90s and at times in the high 70s. My suspicions were verified when I went to my cardiologist to have a new Coumadin test taken (single drop of blood from the finger) and they put the sat monitor on my finger and voila, I had a sat of 84. I felt pretty lousy that morning so I guess it proved my point.
     As luck would have it, we have a very proactive "parish nurse" who upon hearing about my sats started campaigning to get me supplemental oxygen in the form of an O2 concentrator and small bottled oxygen for when I go out. She called today and said she had talked to the VA and Hospice, and that one of them would be willing to pay for it if she got a prescription from one of my doctors. I suspect she will have that in hand within the next day or two. I certainly hope so because I know for a fact supplemental oxygen makes a great deal of difference in my comfort level and ability to function even at a diminished level.
     I thought you might be interested in knowing this in case you might be suffering from the same symptoms. By the way, my ejection fraction is in the high teens. According to the nurse, a low ejection fraction and a saturation of 89 is all that is required for a scrip for supplemental oxygen. bigheart@muchomail.com


Tracey C, March 5, 2003 - Hi everyone, I visited the ER last night with severe dizziness, heavy arm feeling, high pulse and high blood pressure. I was upset so I'm sure that accounted for the pulse and blood pressure. They checked everything out and the doctor came in to say that my EKG showed left ventricle hypertrophy, but that's probably normal for me. Knowing that it's not the norm on my EKGs and not wanting to upset my husband further, I just absorbed the new information without saying much, but of course worrying.
     Finally, we were getting ready to leave and I told the doctor that actually, that's not the norm for me and he said, "Oh yeah, I forgot to tell you, that was your neighbor's EKG; yours was fine." So from now on I will confirm test results prior to leaving. As far as the dizziness and sweating, he thinks it was vasovagal response or inner ear. It's so hard to separate things from the heart these days. I hadn't been to the ER in almost 2 years, but was happy that it apparently wasn't anything serious.
     Oh Jon, I apparently must have missed some posts. Why were you having trouble typing? Did you hurt yourself? Finally, I'm going on a cruise in May. Has anyone had any success with food on the boat? I'm fighting with the cruiseline to allow me to bring some of my own food, but customs doesn't allowed perishables, including bread so I may be at their mercy. Any encouraging words would be helpful. Thank you. 2tcollins@cox.net


Myrtle C's March 6 reply to Joe S' March 3, 2003 - Hi Joe, I think Xanax has become the medicine of choice because it is being promoted by the drug manufacturer. Valium may now be too cheap for anyone to promote it. My physcopharmacologist says Valium is a good med to use when a fast reaction is needed and has a long downward curve helping keep some of the drug in the system. Our grandson, who is a pharmacy tech, tells us that drug manufacturers give goodies even to pharmacists. Imagine how much is given to our physicians to promote certain meds. omie@axs4u.net


Myrtle C, March 6, 2003 - Hi, I have never been one to take supplements other then a vitamin/mineral capsule, Vitamin E, calcium, and recently CoQ10. I now have been told that DHEA-5 may help lower blood pressure, plus other "testimonials" that don't sway me if I don't know the person. I am wondering if anyone has taken this supplement? What about "sea silver?" Is this better by far then other vitamin/mineral supplements? I appreciate any information you have. Thanks, God is for us! Myrtle. omie@axs4u.net


Hal, March 6, 2003 - Hi gang, I just want to thank all the wonderful folks out there that sent along tips and info regarding areas of the country for actually living on disability. I have narrowed my interest down to the state of Arkansas, specifically the Hot Springs State Park region. Of course, every Chamber of Commerce web site looks fabulous but this area warrants closer inspection. There is lots to do: Outdoor activities, hiking, fishing, boating, ect. One site announced new 3 bedroom homes for $117,000. Not that I will ever own a home of my own, but it gives you a better idea of rents in general. I have to tell you my family gets totally freaked about me leaving the country, so I'm saving for a trip to Arkansas. As you must of heard by now, CHF affects me the most from the fact that I can't earn a living. All you good people, please send me any info regarding the Hot Springs area. Thanks so much. Be well. uncahal@webtv.net


Natalia, March 6, 2003 - Hi, This post goes out to those of you who've already had a heart transplant or are waiting for one. I have to tell you, I have never run into such anal people as the Team at Duke University Medical Center. It's been 2 weeks since my evaluation and I'm still not listed because they don't believe that my family who lives in D.C. will be here for my post-op recovery. I can understand their concerns but I don't know what else to say to convince them that my family - who has been down here a few times and spoken to them - already has everything worked out.
     I just want to know from any of you, was it this difficult to get listed for you? Sometimes I feel like they're just waiting around for me to croak, then to say, "Well, that was easy, now we don't have to worry. Next?;" Forgive the sarcasm, but I'm fed up. Thank you for reading. NataliaLaMa@cs.com


Valerie R's March 6 reply to Tom S' March 5, 2003 - Hi, Your post has encouraged me to state my perplexing problem. When I have CHF symptoms, my back right shoulder blade is horribly painful. The first time I went to the hospital it all started with my going to the doctor for the shoulder; I did not know I had heart problems. I just knew the pain in my shoulder was beyond belief and that I had not slept in about 5 days.
     Anyway, when I have symptoms, the pain in my shoulder is the tail that wags the dog, sometimes forcing me to go to bed at 7:00 PM. The only time I get some relief is when I stand under a hot shower spray, but it's back as soon as I get out. It always seems to go away after I sleep now. No one seems to think it is related, but I do. I'd really like to know what it is. Better still, I'd like it to stay away. Valerie. vgrogers@aol.com


Ben B, March 7, 2003 - Hi, I've gone back to work after 4 years of disability. This is my first week and so far, so good. Maybe my doctor was right, we'll see. Anyway, it is good in some ways to be back at it but a little frightening. I'm working for the state of California, involved in investigating energy problems, so it remains to be seen how stressful it will become.
     Anyway, for anybody who has done this also, I'd like to share notes. For anyone who misses work, it is sometimes possible to go back. I'm not perfect, I have an EF somewhere from 35 to 45%, so I hope I hang in there. Anyway, I was very lucky to find a job at these times, especially as an engineer. I can even put down a new e-mail address here. I hope it lasts! :-) bdbrinkman@cpuc.ca.gov


Jon, March 7, 2003 - Hi everyone, My typing has improved to the point that I hope to start answering posts here again, albeit slowly. I am making a web page describing my Coreg and Atkins experiences that should be ready in 2 weeks or less. Please forgive brief replies for awhile - my touch typing still needs some practice. ;-) Jon.


Dave K's March 7 reply to Natalia's March 5, 2003 - Hi Natalia, I'd like to ask you a question about your heart transplant experience at Duke. I would think they would bend over backwards for anyone willing to have a transplant there rather than giving roadblocks. Make sure they read all the notes. Good old Dave, and good luck. dkreifeldt@yahoo.com


Natalia's March 7 reply to Valerie's March 6, 2003 - Hi, I had the same pain for about one month and doctors told me it was muscular. I could barely stand up for a minute, though! They might have been right in a way since the pain started after I had a stroke and spent 4 weeks in a hospital bed. I lost quite a bit of muscle mass so that was their reasoning. Looking back though, now I find out that I had fluid buildup in my right lung all that time. Now that it's gone, the pain never returned. Whatever you do, get it checked out for fluids. natalialama@cs.com


Tom's March 8 reply to Kathy H's March 4, 2003 - Dear Kathy, I become waterlogged with only minor ankle swelling. I have learned water collects first in my stomach. I felt horrible. Nausea was constant. I finally went to another doctor, who confirmed I was totally waterlogged. While doing the echo, they saw that my liver was also swollen with water. After 2 nights taking zaroxolyn prior to Lasix, and wizzing about 20 pounds of fluid, I felt great. They can palpitate the stomach and check you for that. Good luck! Tom. create@ntplx.net


Bob, March 8, 2003 - Hi, Does anyone know of a CHF specialist anywhere in the Springfield, Missouri area? I know there are some in Kansas City, but would like to find one nearer if possible. My cardiologist pretty much intimated that I was lying about having chest pains because they do not make sense to him. I am having chest pains almost daily along with SOB but because I do not have CAD, he is dismissing them. Any help will be appreciated. Thanks, Bob. acp@inter-linc.net


C Kestner's March 8 reply Dan H's March 3, 2003 - Hi, I had this sort of problem when my CHF was at its worst. They pulled about 2 gallons of water out of me in a couple of days, but the indigestion and distended belly problem wouldn't go away. In fact, it seemed to keep getting worse.
     After they got me on a full regimen of CHF drugs, it got a tad better, but not much. It did go away once they put in my pacemaker/ICD. That doesn't seem to make much sense, but my cardiologist explained that it was because my liver was enlarged from my CHF and once the device got my dysynchronous heart beats under control, the problem cured itself. Has anyone ever diagnosed dysynchronous heart rhythm in you? cekestner@bigfoot.com


Lorraine's March 8 reply Tom's March 8, 2003 - Hi, You mentioned taking zaroxolyn 2 nites prior to Lasix. My husband is on zaroxolyn also and aalasix but takes it in the morning. Did your doc tell you to take it at night? Is it better to take it like that? His doc did not say what time to take it. I just want to get the best results. Thanks, Lorraine. gandlsimpson@msn.com


Kathleen, March 9, 2003 - Hi, I'm new to this site. I've had CHF for one year now. I was uninsured, so it has take time for me to receive my defibrillator. I have had it for 5 weeks now. I would love to chat and receive support. I'm 48 and know noone else as young as me with this condition. I will reply to all e-mails. Thanks in advance. mskitty1219@hotmail.com


Tom S, March 9, 2003 - Hi, A new in-clinic Coumadin ProTime (INR) test was inaugurated at the cardiology clinic I have been a patient at for the past 7 years. The test is very much like a glucometer in that it only requires a single drop of blood to get the results. Anyone that has had to suffer through the old fashioned ProTime testing knows what I mean about the old system, which is basically a blood drawing session involving long needles and hopefully, skillful lab techs.
     While undergoing the new test, the nurse at the clinic attached me to an oxygen saturation monitor so she could get my pulse while she took my blood pressure, and waited for the protime tester to do its thing. Out of curiosity because I heard the unit beeping, which is a warning of too low a sat, I asked her what my sats were and she said they were between 82 and 84. I pointed out that it was very low and she shrugged her shoulders and left the room. That was the end of that, despite the fact I was admitted to the hospital because I had a sat of 88 two weeks before, and some a-fib.
     Later my wife was talking to our "parish nurse" who serves the needs of cancer and other terminally ill patients, and she told her about the low sats and the fact the clinic did nothing about it. The parish nurse was really angered by the whole affair and started the process of getting me supplemental oxygen, which she says I need.
     To make a long story short, she went to the clinic and discovered they weren't the slightest bit concerned about my sats and in fact denied I was even a patient there and repeatedly mispronounced my last name. She is not one to fool around with and from what I hear, she raked the clinic staff over the coals. She even asked the nurse who worked with me where she went to nursing school and why nothing was done for me when I was in the office. Again they were less than responsive.
     Since then she has managed to extract a prescription from the doctors at the clinic and had it forwarded to the VA along with my medical history, which will pay to supply me with an oxygen concentrator machine and portable oxygen bottles. It turns out the VA only requires a sat of 89 and a low EF (mine is in the teens) to order supplemental oxygen for the patient. I hope there are no glitches and that I get my machine next week because I really, really, need it.
     This whole experience has left me to wonder just how competent the professionals at the cardiology clinic I go to are. Perhaps with over 500 patients they just can't handle the patient to doctor ratio in a proper and professional manner. The doctors wonder why we gripe about them. No wonder they are targets of huge lawsuits; someone's life is nothing to play with. bigheart@muchomail.com


Giorg, March 9, 2003 - Hi, I am 28 years old and I have been with DCM for almost a couple of years. I am doing quite fine - my EF was about 45% on my last echo. I have a question for people with DCM who recovered their normal EF taking drugs: What about your Vo2max? I think that while EF can get almost normal in a few very lucky cases, Vo2max and physical activity can never in any case get back to normal. My EF improved since I was diagnosed but my Vo2max did not (or did just a little). God bless you. giorgclunei@hotmail.com
 
Jon's note: I disagree, but how many people had their Vo2max measured before heart failure to know for sure? <g> Many factors besides heart function make up Vo2max


Jackie L, March 9, 2003 - Hi everyone, I've got a concern and hope someone here can help. My mother has had CHF undetected for quite some time with swelling in her ankles and feet nearly over her shoes and a dry hack. This has gone on for more than a few years and no doctor has looked at her heart until she had a heart attack 2 months ago. She had major blockages in at least 4 arteries and some in all the others. The cardiologist placed a stent in one that was 100% closed and now wants to do another procedure that I know nothing about and can't find anything on.
     He says her heart muscle has become dense from having to strengthen to try to pump, and that CHF has created dead callus-like tissue that is dragging like a sand bag. The next procedure he wants to do rather than put in a number of stents is go in and shave some of the dead tissue off the heart and then do a bypass. My question is, have any of you had or heard of shaving off the dead tissue. Is there a name for this that I can look for more info on it?
     The women in our family seem to be strong healers, but mom is 78 and I am concerned since I know nothing about this. Can anyone give me any information on this? Is it a common procedure? What should we expect post-op? Thanks for any help you can give me, Jackie. rjlcon@ticnet.com


Brenda H, March 10, 2003 - Hi everyone, I am a 45 year old female diagnosed in December with DCM and class 4 CHF with an EF of 18%. I thought it was my asthma. My prognosis was "guarded" when released from the hospital. I am currently taking 2.5mg Altace and 40mg Lasix. I am staying on a low sodium diet.
     I have only seen my cardiologist once since my release and he seemed to think I was doing pretty well, but I'm not. When I've called and talked to the nurse about it, it takes her 2 or 3 days to call me back and to say that the doctor wants to see me and has an appointment for me in 3 weeks. I used to be an active person but now can't even do simple household chores and just getting dressed makes me winded. I don't sleep well and I think it's because of all the crackling in my chest (rales). I want my life back!
     My husband and i decided that I wasn't being treated aggressively enough and I am changing cardiologists. I have an appointment for tomorrow and am hoping you guys could tell me what kinds of questions I should ask. Any suggestions would be so appreciated. Thanks so much, Brenda. waterwoman11@yahoo.com


Billy, March 10, 2003 - Hi, I was told in October of 2002 that I had heart failure and needed a heart transplant. By the grace of God I was able to avoid transplant and go on medicines. I was wondering if anyone knows why your energy level will go from okay to where you feel like you're going to fall on the floor?
     My EF is 15%. I go for another echo and stress test later this month so the doctor can decide the best course of treatment. The doctor told me back in Oct that a virus attacked my heart and caused my heart to enlarge and my valve to leak, with heart failure. Is this common?
     Also they tell me I need an ICD. Does everyone with heart failure need one because of sudden death? What about the survival rate of heart failure? Some sites say 50% die after 5 years. Is this about right? Bbiggersl@aol.com


Tom P's March 10 reply to Lorraine's March 8, 2003 - Hi, I took 5mg of Zaroxolyn 1/2 hour before the Lasix. I did that sequence for 2 days. I don't think the time of day matters other than if you want to sleep vs making 100 trips to the bathroom. <g> That is why most docs say take it in the morning. After this experience, I realize I must be even stricter with fluid intake and the hidden sources of sodium such as a slice of bread (170mg) and dining out. Weighing yourself daily is a lot more important than I thought. As Jon said under Edema, once your stomach gets bloated, you may not absorb the oral diuretics! After this experience I am much more fanatic. Good luck! Tom in Connecticut. create@ntplx.net


Gino's March 10 reply to Marlito's March 2, 2003 - Hi Marlito, Electrolyte imbalance like in your case - low sodim and chloride with normal/high potassium, associated with rise in BUN and creatine - requires careful watching by your doctor. I advise that you speak about this with your heart failure specialist immediately.
     How much water and fluid do you take in one day? In this case you should not exceed 1 to 1.5 liters per day and use zaroxolyn episodically. I repeat: You should contact your cardiologist. Ciao, Gino. gitarant@yahoo.com


Gino's March 10 reply to Giorg's March 9, 2003 - Hi, I like this kind of debate. Personally, I agree with Jon and I'll try to contribute to the discussion by enclosing 2 abstracts recently published.

We studies the impact of beta-blockers on currently used risk predictors in heart failure. The study included 408 CHF patients with EF less than 45%, all taking ACE inhibitors or ARBs. Patients were split into those taking a beta-blocker (165) and those who were not (243). In all patients, EF, peak Vo2, blood norepinephrine and N-terminal pro-BNP were measured.
     Heart class, peak Vo2, and NT-proBNP were similar in both groups. The beta-blocker group had a lower heart rate (68 beats/minute versus 76), lower blood norepinephrine (1.7 nmol/l versus 2.5) and higher EF (24% versus 21%). Within one year, 34% of patients not on beta-blockers, but only 16% of those taking beta-blockers reached the combined end point of hospital admission for worsening CHF and/or cardiac death.
     A benefit of beta-blocker use was most obvious in advanced CHF. Seen less often in beta-blocker patients were peak Vo2 under 10 ml/min per kg (26% versus 64%), EF less than 21% (25% versus 45%), blood norepinphrine level over 2.24 nmol/l (18% versus 40%) and NT-proBNP over 364 pmol/l (27% versus 45%). This is despite the fact that patients only got an average of 37% of the recommended beta-blocker dose.
 
Title: Impact of beta-blocker treatment on the prognostic value of currently used risk predictors in congestive heart failure.
Authors: Zugck C, Haunstetter A, Kruger C, Kell R, Schellberg D, Kubler W, Haass M.
Source: J Am Coll Cardiol. 2002 May 15;39(10):1615-22.


After long-term beta-blocker use, some heart failure patients have a much improved EF. We compared characteristics and prognosis of these patients to those of other patients. One hundred seventy-one CHF patients were examined before and after 9 to 12 months of beta-blocker use.
     Thirty-eight patients (22%) showed an increased EF of at least 15%; Non-beta-blocker patients showed an EF increase of only 5%. Beta-blocker patients also showed reduced heart size and pulmonary wedge pressures, with increased cardiac index, stroke volume, and maximum functional capacity.
     Beta-blocker patients' long-term prognosis was excellent, with 2-year survival rate of 95% versus 81% for the other patients, and a hospitalization-free survival rate of 73% versus 50% for the other patients. Only nonischemic cause of CHF and average arterial pressure at study start were independently linked to a large EF increase.
     Patients who show large improvement in EF after long-term beta-blocker use have an excellent prognosis and are more likely to have nonischemic CHF and higher blood pressure before starting beta-blockers.
 
Title: Marked improvement in left ventricular ejection fraction during long-term beta-blockade in patients with chronic heart failure: clinical correlates and prognostic significance.
Authors: Metra M, Nodari S, Parrinello G, Giubbini R, Manca C, Dei Cas L.
Source: Am Heart J. 2003 Feb;145(2):292-9.

Ciao, Gino. gitarant@yahoo.com


Marlito's March 11 reply to Gino's March 10, 2003 - Hi, Thanks for the advice on my status. I talked with my cardiologist and he advised stopping all diuretics and close monitoring of electrolytes, BUN, and creatinine. Today after 5 diuretic-free days, my K, Na, and Cl levels are back to normal, with creatinine at 1.5 (normal max is 1.3) and BUN around 80 (normal max around 38). However, I have gained 7 lbs so far. mcardenas@pacific.net.ph
 
Jon's note: Does dropping sodium intake to 500mg daily help at all?


Jon, March 14, 2003 - Hi everyone, I'm sorry about the web site disappearing for a few days; it was a case of losing a trunk line and I am now switched over to a different one. The form on this page may not work for another 12 to 24 hours, though. I am sorry. Jon.

Jon, March 15, 2003 - Hi everyone, Well, everything is working again now. I will catch up on posts as soon as possible. Jon.


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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