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

Valerie R 5-17     update and prayer request
Joanie's 5-17 reply to Michelle A's 5-15     some history and a question
Amy 5-19     edema question
Shelly 5-19     SSD questions
Crystal S 5-19     what about the 10 year mortality thing?
Kathy 5-19     is water the best thing to drink?
Chuck H's 5-19 reply to Crystal S' 5-19     the 10 year mortality thing
Crystal S 5-19     the 10 year mortality thing
Lydia Moore 5-19     stiffness and soreness & more
Pamie R's 5-19 reply to Sheri M's 5-6     sweating spells and more
Joanne R's 5-20 reply to Amy W's 5-19     gout a possibility?
Michelle A's 5-21 reply to Joanie's 5-17     asthma, CHF, heart defects & more
Shery C's 5-21 reply to Pamie R's 5-19     controlling blood sugars
Kathy 5-21     good day and bad days
Pamie R's 5-21 reply to Shery C's 5-21     more info
Jack D's 5-21 reply to Shery C's 5-21     blood sugar question
Valerie R 5-21     making decisions
Crystal S' 5-22 reply to Kathy 5-21     good day and bad days
Kathy 5-23     heart valve problems and more
Peggy A 5-23     update and seek e-mail pals
Norma W 5-23     update
Cat's 5-23 reply to Kathy's 5-21     heart valves and heart failure
Karl 5-23     seek experiences with Vasogen
Peggy A 5-26     EF
Ron P 5-26     seek tips on dealing with heat and sweating
Evelyn 5-26     intro and more
Shery C's 5-26 reply to Pamie R's 5-21     and to Jack D
Jack D's 5-27 reply to Shery C's 5-26     blood sugar control
Bonnie 5-27     who has trouble remembering & sleeping?
Kathy 5-27     is an ARB good enough?
Tom P 5-27     can we become tolerant of diuretics
Jon's 5-27 reply to Tom P's 5-27     diuretic resistance
Tracey C 5-27     update - back from my cruise
Mike 5-27     a great book for CHFers
Barbara H 5-28     some questions - need advice
Betty L 5-28     low sodium life style and more
Jon 5-28     information about diuretics
Betty L's 5-28 reply to Ron's 5-26     trying to stay cool
Betty L 5-28     hormone replacement therapy questions
Jon's 5-28 reply to Betty L's 5-28     hormone replacement therapy
Marly's 5-28 reply to Tom P's 5-27     diuretic tolerance
Vicki 5-28     question on connective disease and CHF
Linda O's 5-28 reply to Bonnie's 5-27     HRT experience
Lydia M 5-28     what can we take for a cold?
Hal 5-29     why restrict fluids?
Jon's 5-29 reply to Hal's 5-29     restricting fluids
Betty L's 5-29 reply to Lydia M's 5-28     cold symptom relief
Susan B's 5-29 reply to Lydia M's 5-28     sinus headache relief
MaryJo 5-29     does anyone use foreign pharmacies? and more
Lydia M's 5-30 reply to Betty L's 5-29     thank you for the information
Lydia M 5-30     seek advice on muscle stiffness & weakness
Susan B 5-30     seek pacemaker experiences
Dale 5-30     should we be worried?
Peggy A's 5-31 reply to Mary Jo's 5-30     how do I pay these bills?
Jon's 5-31 reply to Peggy A's 5-31     changing jobs and health insurance
Ann C 5-31     seek heart transplant experiences
Valerie R's 5-31 reply to Dale's 5-30     getting all the needed information
Joe S' 5-31 reply to Hal's 5-30     restricting fluid intake
Cristina L's 5-31 reply to Lydia M's 5-30     muscle aches experiences and more
Kathy's 5-31 reply to Dale's 5-30     knowledge is one key
Nan S 5-31     why am I losing weight on low sodium?
Valerie R's 5-31 reply to Nan S' 5-31     I also need to gain weight
Jon 5-31     need some input from everyone
Catherine 5-31     seek experiences at high altitudes

Valerie R, May 17, 2003 - Hi everyone, I just got back from my third trip to Club Med this school year. I'm frightened and could use your prayers. This is my first night home and I'm up so I won't listen to myself breathe; this after 6 good nights of sleep in the hospital, although I was given sleeping pills there by my PCP. I went in an ambulance again, like March 20th, but the paramedics said my oxygen saturation was good, nothing on x-ray, and one of my doctor's 8 partners told me it was a panic attack. The next day they took my BNP and it was 1900.
     I was glad when my doctor came back from out of town. He says I have developed more heart rhythms: A-fib/flutter as well as the V-tach I have an ICD for. He has put me on 200mg amiodarone (Cordarone) BID. Just reading about that is enough to keep me awake. He kept me on Accupril, Lasix, digoxin, Coumadin (warfarin), calcium, and magnesium. He added 25mg of Aldactone (spironolactone).
     I have no doubt there is panic and anxiety in me, especially when heart transplant evaluation is mentioned by my normally optimistic doctor. I cannot finish this school year and I will most probably retire this summer. I'm praying and could use your thoughts. Valerie.

Joanie's May 17 reply to Michelle A's May 15, 2003 - Hi, I see an ACHD specialist. I have to see a specialist because a cardiologist will not see me. I was seeing a PCP but when I turned 18, I had to be switched to an adult specialist. A few cardiologists have seen me but wouldn't take my case because they said my anatomy is different so I needed to see someone who specialized in CHD.
     I was passed around and didn't even see a specialist for awhile. During this time I developed CHF. I went to 2 different emergency rooms several times and was told that I had a kidney infection or an ulcer. The last time I went, thankfully there was a doctor on call at the emergency room who has a daughter with a CHD and he recognized the signs admitted me that night and had a ambulance come get me and transfer me to Barnes Jewish in the morning. The ambulance broke down halfway there.When I did get there I was admitted and I met with a ACHD specialist. I still see him.
     They did a ballon angioplasty and took about 15 lbs of fluid off me. A year ago I moved to Georgia and I went a heart transplant/heart failure clinic. I wasn't comfortable with the doctor so I moved back to Missouri and I got back with the ACHD specialist at Barnes Jewish. In Georgia they did another ballon angioplasty because the one they did in Missouri started to close again. She also said my lung pressure was too high and wasn't comfortable with it, the same thing the lung specialist said a few weeks ago.
     During the cath they had to raise me up because I had trouble breathing and I couldn't stop coughing. Anyway, I am thinking that my lung pressure has been high since then and maybe it is just normal for me. I was tested for asthma and he couldn't say for sure if I have it. He said I may have a slight case of it. I was wondering if asthma can cause the pressure to be high?

Amy W, May 19, 2003 - Hi, I was just curious about this. A few times in the past 5 to 6 months the top of my right foot, toes and the underside, would swell and it was painful. It would last a few days or so. I did wonder what it could be. I thought it was due to a callous on the bottom of my foot, and also from walking barefoot on the treadmill but now I'm wondering if it could have been edema. Could edema be only on one foot at a time? When it swelled, you could really notice it. It was squishy but firm at the same time. I'm still learning about CHF.

Shelly, May 19, 2003 - Hi, I'm new to the board and fairly new to CHF. I was diagnosed 4 months ago after swelling to the point of inability to walk or breathe. ER x-rays showed CHF.
     My questions are regarding SS Disability. Along with CHF, I have high blood pressure, diabetes that can't be controlled so I'm insulin dependent and take pills, fibromyalgia, and am bipolar. I take meds for all of them and I'm wondering if getting SSD would be difficult with all these illnesses? Any info or suggestions will be greatly appreciated.

Crystal S, May 19, 2003 - Hi, I am just wondering, when they say the mortality rate is around ten years does that mean for somone currently "in" congestive heart failure or even for the ones who are asymptomatic? I am the latter but I have been having nightmares and worrying excessively about not being here for my children in ten years. I am getting upset just putting my fears into words.
Jon's note: Who told you 10 years?

Kathy, May 19, 2003 - Hi, I was wondering if the effects of drinking pure water (not mixed with anything) flushes your system. I have heart failure and worse this time than other times, and realized that I'd been drinking less straight water. I am back at it and it seems to be flushing me out faster than Koolaid or juice. Is water beneficial or am I just reaching for anything? Anybody with any knowledge of this? Thank you, Kathy.
Jon's note: Water is absolutely the best and healthiest thing you can drink

Chuck H's May 19 reply to Crystal S' May 19, 2003 - Hi, That 10-year thing is nonsense. There is no firm set "time" and the prognosis, particularly without symptoms, can be excellent. Each case and each opinion is different. I've always heard that symptoms are more of an indicator than numbers. You didn't say if yours was post-partum but I think that category bounces back well.
     Outlook can be critical and it sounds like you need to learn more facts and be more optimistic! This is by no means a death sentence. I think the odds are with you, regardless of what your particular circumstance is, but it sounds like your case is mildYou might ask your doctor about Zoloft to help get past possible depressive feelings about CHF.

Crystal S, May 19, 2003 - Hi Jon, I was reading the Heart Failure Numbers by Dr. Robert Centor. I had to look at it again since you asked and it did state that it is all guesswork. I guess I shouldn't worry so much, huh? I know that they can't really say how long anyone has and that's probably part of the problem: I hate not having an answer.
Jon's note: He's talking pure statistics, without any regard to cause, severity, other conditions present, etc... ;-) It's normal to be scared - be sure to read The Manual for more on mortality

Lydia Moore, May 19, 2003 - Hi Jon, It's me, Lydia. I wonder if you can give me some insight into my question. Last week I was really feeling bloated. My doc was not on call and his associate recommended that I take 2 extra Lasix pills and 3 K-Durs (potassium). I have been doing this for 3 days now. My muscles in my arms and legs feel so stiff, I can't stand it.
     Do you think the higher level of potassium coould do this? I have a call in to the doctor. I might hear back from him before you have a chance to answer this question, but I am afraid right now and am just putting it out there to feel in touch, and more secure about what is going on with me. Thank you and God bless, Lydia.
Jon's note: It could be the potassium or the CHF flare-up itself. Three days is a long time to be on extra Lasix if you've been stable previously. You should see your CHF doc for an exam and bloodwork and further reduce sodium in your diet for a week.

Pamie R's May 19 reply to Sheri M's May 6, 2003 - Hi Sheri and fellow heart patients. Sheri, I just wanted to tell you that I'm having hot sweating spells too. I was put on Toprol-XL last October plus I was taken off hormone pills, so I really don't know what to blame my sweating spells on, but it is frequent profuse sweating. My whole body feels like it's burning up.
     I am also a diabetic. I am on insulin 3 times a day at present. My blood sugar is still very uncontrolled. I was diagnosed in 1997 with cardiomyopathy, liver disease (autoimmune) in 1998, and diabetes in 2002. Thanks Jon, for the list of foods and carbohydrates in them. I found it very helpful! I haven't been reading the message forum for awhile but hope to stay in touch. Thanks again. Pamie R in Maine.

Joanne R's May 20 reply to Amy W's May 19, 2003 - Hi Amy, I had a similar sounding experience and my PCP tested my blood for uric acid level. Mine was elevated. You should have a level between 2 and 6, and mine was 10. This isn't uncommon for persons on the program of meds we CHFers take everyday.
     The PCP prescribed Allopurinol 300mg tabs once a day and the pain and swelling have not returned. Good riddance to bad rubbish, I say! This might not solve your problem, but it couldn't hurt to check it out. Be well and God bless, Joanne.

Michelle A's May 21 reply to Joanie's May 17, 2003 - Hi, I have asthma in addition to CHF. Asthma doesn't increase pressure in the lungs. That would be pulmonary hypertension. Asthma is a completely different disease.
     It's sometimes hard for them to figure out what's wrong with us when we have symptoms. Four months ago, I went to my doctor with what I thought was a respiratory infection, but it turned out to be CHF. I had to have several tests before the diagnosis could be confirmed, and they basically ruled out everything except CHF.
     I've had CHF for a long time, but I haven't been symptomatic until now. My echo, ECG, and chest x-ray were unchanged, but none of my symptoms matched up with asthma or a respiratory infection. My cardiologist said this happens a lot to us adults with complex CHD, and it can take some time, many tests, and several doctors to figure out what's going on. Sometimes, as in my case, they have to treat the symptoms by trial and error to confirm a suspected diagnosis. My CHF diagnosis was confirmed when Lasix eliminated all of my respiratory symptoms.
     Are your doctors talking with each other about your case? Maybe they all need to get together and figure things out. You could go in circles forever if you have more than one doctor and they all say different things. My docs have always had conferences about me, so I haven't really had too much trouble with different diagnoses for the same problem. My biggest problem is getting them to tell me what's going on!
     My advice is to learn everything you possibly can about your defect, complications, treatment, and symptoms. Be as proactive as possible and don't quit until everything has been explained to you to your satisfaction. I guess this goes for everyone else on this board, too.

Shery C's May 21 reply to Pamie R's May 19, 2003 - Hi Pam, Why aren't your blood sugars under control? Are you keeping a daily log with your blood sugars 4 times a day? Are you checking them 2 hours after you eat? You need to get this regulated. It is not an option. Diabetes does so much damage to our bodies even when our blood sugars are in the normal range.
     You need to work with your doctor to improve your diet, exercise, and insulin dosages. Do you know the onset, duration, and peak times of your insulin? Do you adjust your insulin to match the carbs you eat and the exercise you have planned? Are you on a long lasting insulin besides the short acting one?
     You are severely limiting the quality of your life if you continue to ignore high blood sugars. Good luck - but get tough with yourself. Let me know if I can help. Sheryl.

Kathy, May 21, 2003 - Jon wrote it, I knew it, but I just don't understand what causes it: The good days and the bad. Why is it that you can have a run of bad days or a run of good days, and nothing different has been done? Consistent with the diet and the daily routines and still, these runs of ups and downs. Is there anyone with any knowledge of what causes CHF patients to have these highs and lows?

Pamie R's May 21 reply to Shery C's May 21, 2003 - Hi Shery, Thanks for your concern. I should have explained further, I guess, about my diabetic condition. I am working with my doctor and a diabetic couselor. I am on 2 kinds (Novolin R and Novolin N) of insulin and check my blood sugar 4 or 5 times a day. It is a long process getting my sugar under control because of my overall medical history. The one and only oral medication that I was able to take didn't help my sugar at all because it passes through my liver and my liver disease prevented it from working. I have to get regulated on insulin.
     I count carbs and am being careful with my diet. I also treadmill or walk daily. I realize that uncontrolled diabetes can tear my body down. Believe me, I wish the doctor had started me on insulin long ago. My cardiologist in Boston finally got on my primary care doctor's case. The diabetic counsellor has been working with me for 5 weeks trying to lower my sugar. It seems like my whole life is revolving around my diabetes.
     Are you an insulin dependent diabetic? I am going to my doctor in a week and hopefully he will order a better long lasting insulin. He did mention putting me on Lantus eventually.

Jack D's May 21 reply to Shery C's May 21, 2003 - Hello Sheryl, I have a question. What does diabetes do to our bodies when our blood sugar is in normal range? After I read that I searched and searched and could find nothing except that high blood sugar caused damage to our bodies. I have diabetes and keep my blood sugar strictly controlled through diet only, and my readings live in the 100 to 130 range. My doc put me on Coreg but 2 doses brought my blood sugar up to 140 so I don't take Coreg anymore.

Valerie R, May 21, 2003 - Hi everyone, I went to the doctor today and we decided I should stay out of school for the rest of the year, particularly since my room at school runs 80 degrees in the afternoon. My EKG showed no sign of a-fib, which is good, but I went in and out of it while at the hospital. My QRS interval went from 100 to 115, and the doctor does not know why.
     He wants me to go to a transplant team to "discuss my option." I will do that. He was very vague about what will happen, but your site, Jon, is giving me some good info. I read until I feel my anxiety level go up, and then I move on to other things. I feel pretty good, although I still get anxious about going to bed at night. Valerie.

Crystal S' May 22 reply to Kathy's May 21, 2003 - Hi, Don't quote me but I think Jon suggested that maybe it is our EF fluctuating. I have them too but since I started cardiac rehab it seems better. Are you in rehab? It's been great for me.
     Of course, I found out that going to the zoo and walking around for 5 hours isn't a good thing. <g> Live and learn, right?

Kathy, May 23, 2003 - Hi, I have found out that I am not the only one who comes to this site with mitral valve problems. It's almost comforting to know that there are others and the valve problem caused heart failure in us also.
     In reply to Crystal: This is so new for me - the diagnosis anyway - that what I know I seem to have learned on my own but I also know that too much walking and being on your feet is not good for CHF. Water pills don't seem to do their job if I am on my feet too long or have any sodium at all, even though it is kept well under 1500 mg a day.
     Thank you Jon, for the opportunity to express ourselves on this site, and to have the opportunity to meet others and to share what is going on. Kat.

Peggy A, May 23, 2003 - Hi everybody, It's been awhile since I last posted so I thought I'd drop by with an update. I have some good news:: My ejection fraction is somewhere between 15 and 20%, I don't remember the exact number, Dr. Moore told me though, but I know this is good. At least, I believe it is.
     He changed me from Captopril and metoprolol, but said I could finish taking the supply I had on hand while waiting for the mail order pharmacy to send me Coreg and Mavik. In case you're wondering, Mavik is replacing Captopril and Coreg replaces the metoprolol. I got the meds in from mail order and I'm finishing up the supply of Captopril and metoprolol. I inquired with his nurse about using them up before starting the new meds so I didn't waste the money I spent on them and she said that would be okay.
     I find that Coreg and Mavik are expensive at $153+ for both for a 90-day supply from the mail order pharmacy my state agency uses. I guess by now you know I work for the state of Mississippi. We have a BC/BS group health insurance plan and use AdvancePCS and AdvanceRx out of Birmingham for mail order pharmacy supplies.
     I was tested for potassium a couple of weeks ago and they found it was low, so Dr. Moore added a potassium chloride "horse pill" to my regimen. Then I was retested Monday along with INR and the results are that I'm stable on both the potassium and the Coumadin fronts. I don't retest for anything until June 20th when I have another appointment with Dr. Moore. They told me to see him before I have the lab work done in case he wants to have other blood work done so it can be done at the same time and I won't have to make a second trip and get stuck a second time.
     By the way, when I had the lab work done on Monday, I got lucky. The phlebotomist who did it used a different technique and I never felt the needle go into my arm, no pain at all. I usually feel some when it's inserted. Also, I was changed from the Coag Clinic to the lab at the hospital's Medical Pavilion. Dr. Moore wanted to manage my Coumadin himself.
     I'd like to hear from some of y'all who might like to keep in regular contact with me - sort of e-mail pals, if you will! Thanks for reading my rambling and have a safe and happy holiday weekend, everybody!
Jon's note: What was your EF previously?

Norma W, May 23, 2003 - Hello everyone, It's that time again when I return to Canada after enjoying 6 months of good weather in Florida. Except for 3 bouts of a virus, I have been well and am asymptomatic for CHF. Good days and bad days yes, but no SOB on exertion and no change in meds for 5 years. I have added L-Carnitine to the Hawthorne and CoQ10, as well as concentrated Green Tea Plus.
     My last visit to the cardiologist affirmed I was, in their eyes, still class 4. My EF was 19% five months ago and has never been above 22% in over 5 years since I cannot take Coreg. Good luck to all of you who are battling fatigue and depression. You are in my prayers and those of all of us on this horum who understand. Norma.

Crystal S' May 23 reply to Kathy's May 21, 2003 - Hi, I'm not 100% sure but believe that mitral valve problems can cause DHF. If that's the case, you can have the symptoms of heart failure but still have a normal EF. Jon, correct me if I'm wrong.
Jon's note: I think mitral valve problems often cause CHF while aortic valve problems can cause DHF.

Karl, May 23, 2003 - Hi, Has anyone here heard of Vasogen? They are a company based out of Toronto and are currently working on two phase 3 trials in CHF and peripheral artery disease. My question is, has anyone here participated in any of their trials? If so, was your experience a positive or negative one? Did the non-drug therapy work? I would appreciate any comments or thoughts on this. Thanks in advance.

Peggy A, May 26, 2003 - Hi Jon, I don't know what my ejection fraction was previously. I didn't know I had a problem until I wound up in UMMC as a result of the mild stroke and they found the CHF and other problems.
Jon's note: You can read about EF at

Ron P, May 26, 2003 - Hi Folks, I haven't written in awhile. I am 71 years old and have been diagnosed with CHF for a little over 3 years. I have the Guidant ICD and it helps some. I have SOB with any exertion or stooping over. Getting a good shower is like real work. My EF a few months ago was 24%.
     I am having a terrible time with sweating and being too hot at anything over about 60 degrees. Other people can't stand the temps too. Is there anything that I can do to be able to tolerate normal heat? Summer is about here in western Texas, and my wife and I can't stand the higher altitudes of Colorado anymore.
     May the Lord bless all of you folks and thanks again, Jon. Ron Pollan from Amarillo,Texas.

Evelyn, May 26, 2003 - Hello, I was diagnosed in March with CHF and an EF of 20%, bundle branch block, and small mitral valve leak caused by the enlarged heart, they think. I am taking Aldactone (spironolactone), Coreg, digoxin (Lanoxin) and lisinopril. Since diagnosis I have changed cardiologists and my PCP because I was not comfortable with them. The cardiologist that I changed to, recommended that I go to another doctor in his group that is a CHF specialist and I will finally meet with him on Wednesday. I hope he will help me come to grips with all this.
     My PCP is staying on top of all this and has taken charge of all my medical conditions and is really closely following my new heart problems. He has recommended that I start taking selenium and CoQ10 since they may help also. I am so very thankful to have found Jon's site and being able to read your posts as they tell the story like it really is rather than just from doctors who look at everything clinically.

Shery C's May 26 reply to Pamie R's May 21, 2003 - Hi Pam and Jack, Yes, I am insulin dependent and take Novolog and Lantus. Pam, if your morning blood sugars are high then the Lantus probably should be started. I'm glad to hear your doctors are working closely with you on this. Your whole life does revolve around this disease. Planning meals ahead of time and eating on a regular schedule help your body use the insulin as needed.
     Jack, even if your blood sugars are under control, you can develop neuropathy. If you are not testing 4 times a day, are you really sure your blood sugar is under control? What are your sugars 2 hours after you eat? The benefits of taking Coreg and then controlling blood sugar with medication have been proven. Please talk to your cardiologist about this. Sheryl C.

Jack D's May 27 reply to Shery C's May 26, 2003 - Hi Shery, My blood sugar is in the range of healthy people who don't have diabetes. My doctor does A1C tests and it tests normal. I was testing at least 3 times a day but my doc told me to quit testing so much because I am controlling the sugars. Even when I was in the hospital (for a heart-related thing) and they kept poking me and I told them, "It's going to test somewhere between 100 and 130" they would sneak in after I ate and at different times. They found out I was right so they starting testing just twice a day. I don't take meds. I follow a strict diet.

Bonnie, May 27, 2003 - Hi, This is my first time to ever do this, so I hope you'll be patient with me. I started having heart trouble when I was 37 years old; that was my first heart attack. I have been in and out of the hospital for several years now and it seems like it is just a part of my life now.
     In 2001, I was told that I had CHF in May and spent a week in the hospital. After 2 weeks of being home I had to go back into the hospital for a heart cath. At that time, they told me I might need surgery, which none of the surgeons thought I would make it through so they put a stent in and I returned home.
     During the next 4 months I was in the hospital 5 times. I returned in October having a very serious heart attack, at which time they did a quadruple bypass. I have been feeling pretty good since then as long as I don't get stressed. During that year they did find out that I am a type 2 diabetic and have low thyroid so I was put on medicine for these things.
     When I was 28, I had a total hysterectomy and I have been taking an HRT medicine. I was told that I would need to take that or I would have heart trouble and bad bones. Now the other day while seeing my doctor, he took me off the HRT. I also have high cholesterol that I take medication for, which doesn't help.
     Now I have problems with remembering things and can't sleep at night. Does anyone else have these problems?

Kathy, May 27, 2003 - Hi, I had posted about severe nausea and dry heaves, ongoing since Christmas. My dig levels were fine. Today they took me off digoxin and changed me from Lotensin to Cozaar, since it seems that the dry Lotensin cough triggered the nausea - at least sometimes. Is an ARB as good as an ACE inhibitor, or should I suck it up and deal with the constant nausea? When I say constant, I am talking 10 to 20 episodes of dry heaves per day, severe enough to make me pull to the side of the road or leave a room and go to the restroom for 5 minutes. They leave me shaking and drained and sweating. They also stopped Lipitor, since even while taking protonix I developed esophogeal erosion. I want my life back.
Jon's note: If it were me, I'd stick with an ARB

Tom P, May 27, 2003 - Hi, Since April of 2002, I have taken 80mg furosemide (Lasix) daily. It acted quickly and with significant results, and I was not fanatic with diet. From December of last year to to this March, I began battling with rising water weight. I eventually began taking zaroxolyn 30 minutes before 160mg Lasix. I still must do that once per week. I still struggle with water weight (adominal).
     Do people develop an immunity to diuretics? Do they need to change types? It does not work like it used to, and I do better avoiding sodium, although limiting fluids still comes tough. Any sharing appreciated! Thanks.

Jon's May 27 reply to Tom P's May 27, 2003 - Hi Tom, To state the obvious, you must stick to a true every-day low-sodium diet above all else or your diuretics won't cut it no matter what. Yes, some CHFers develop diuretic tolerance. I have an article on it in process and will try to get it done tonight so it will be available tomorrow morning. Diuretics are available in many flavors and do not all work in the same way. However, before switching to a different one or adding another one, you must get your diet and fluid restriction in working order. You also need to make sure your meds follow the official guidelines. I'll post if the article turns out to be helpful. Jon.

Tracey C, May 27, 2003 - Hi everyone, I just got back from a week's cruise and did just fine. I was worried about the food situation, but having the same waiter every night really helps. He even came and grabbed something away from me one night before I'd tried it, saying they'd prepared it wrong. They made steak and fish for me every night and while I didn't get to partake in the menu that everyone else enjoyed, it was still a wonderful experience.
     I also learned on my last night that one of my tablemates was a cardiac critical care nurse. She said she'd watched me all week and was very impressed, saying that many of her patients don't watch what they eat, especially in that situation. I guess she didn't tell me what she did until the last night so she could enjoy her dinners and avoid any heart questions she'd expect one might ask her. Take care everyone, Tracey.

Mike, May 27, 2003 - Hi, I found a great book for CHF patients. It's called Success With Heart Failure by Marc Silver, MD., Third Edition. I found it at Dr. Silver actually mentions this web site in his book. It has helped me very much. I have CHF with a 25% EF but feel super - no more depression. MikeGovern@HotMail.Com

Barbara H, May 28, 2003 - Hi everyone, I'm here again on behalf of my dad. I have a few questions. Overall, my dad has done well in that he has had no fluid accumulations and no hospital visits in the 1-1/2 years. However, over the last few weeks, he is feeling more tired than usual and naps at least twice a day. Any suggestions?
     I've been reading about L-carnitine and taurine, and wonder if people have found these to be helpful. If so, do you take both, one over the other and in what dosages?
     I've noticed that my dad's leg muscles appear to be disappearing, even though he stays as active as he can with regular walks, gardening, stuff around the house. I've learned so much from this site, so thanks to Jon and all who post. Good health to all. Thanks, Barbara.
Jon's note: see this post

Betty L, May 28, 2003 - Hi, This is my first time here. I had CHF 4 years ago and went from a 10% EF to 55% now! I am 57 years of age and feeling great. About low salt, I use lots of lemon juice, which I buy in big bottles at warehouse food sales. I use it on everything from pasta water to adding great taste to those homemade broths. I eat all fresh and frozen veggies, mostly fresh everything. There are lots of no-salt cereals out there, and dutch dill rye is the lowest sodium around here. You make your own - go to to get recipes for that. It is also a CHF site started by a guy like Jon who actually has lived the life. He also has a cookbook for lowest sodium recipes that is excellent.
     I have been blessed to be doing so well but I've also worked really hard at it and had to educate myself since a lot of doctors don't have the info that we do, and can't use it if they wanted to. Betty.

Jon, May 28, 2003 - Hi everyone, The article on diuretic resistance is ready and can be viewed at I will also send it out as a mailing soon. There is another article on diuretics I mailed out recently available at More useful info can be found at I hope it helps. Jon.

Betty L's May 28 reply to Ron's May 26, 2003 - Hi Ron, I have a 55% EF and still have a problem with heat all year round here in California. When it gets really bad or we're travelling through Texas and the hot states in summer, I use a spray bottle and also keep a wet towel and hang it around my neck. It's not a fashion statement, but who cares. I even take Ziplocs and when it's really bad, I put the towels in a cooler loaded with ice. Just rubbing it on wrists and neck really helps. Take care.
     I haven't been able to sweat because of CHF in 4 years! Does that make sense?

Betty L, May 28, 2003 - Hi Jon, I forgot to ask you my question! I had CHF 4 years ago, viral pneumonia, being treated for asthma (didn't need), and my doctor had me on 10mg of progesterone just 4 months previously. I've read that this drug can cause stroke and CHF. With our hearts in weakened conditions, I am wondering how many ladies out there are still on hormone replacement therapy? I am using a natural progesterone. Do you or anyone out there have any knowledge or experience with this? Thanks for you forum. Betty.

Jon's May 28 reply to Betty L's May 28, 2003 - Hi, I am no expert but I believe the risk is not that hormone replacement therapy (HRT) will cause CHF, but that if you already have heart failure, the hormones will make it worse. HRT does increase risk of blood clots, thus stroke risk. See for more information. When searching, search for progestin as well as progesterone. Don't let your doctor be vague if he puts you on it. Ask for specific trial results that support his views and look them up.
     When you say "natural" progesterone, I assume you mean the micronized forms. Jon.

Marly's May 28 reply to Tom P's May 28, 2003 - Hi Tom, My experience tells me one could get immune to diuretic. I've been on low dose Lasix (20 to 40mg per day) for over 5 years. Last year I had worsening CHF with an EF of 15 to 20% and edema problems. I had to increase my Lasix up to 160 mg per day and yet was having water weight problems depending on my sodium and liquid intake.
     Then I got a mitral valve repair and an ICD in July of 2002. I still have edema problems but more abdominal than leg swelling. Two months ago I shifted to Bumex (at the start 8 mg per day and reduced gradually to 2 to 4 mg perday) and even tried it once with zaroxolyn, leading to extreme weight reduction (12 lbs in 2 days) but accompanied by overloaded kidneys. I am still responding well to Bumex although my kindeys are still a bit overworked (slightly elevated BUN and serum creatinine).

Vicki, May 28, 2003 - Hi, I'm wondering whether connective tissue disease such as lupus could be a contributing factor in cardiomyopathy or whether it could be the result of cardiomyopathy. I have had a high ANA titer with a homogeneous pattern on the last 2 tests I've had over the course of 3 months. I am waiting for my internal medicine doctor to get me into a teaching hospital such as Shands, Oshners, or Mayo for a thorough evaluation. I have many of the symptoms of lupus and myosotis. At age 49, I think I'm falling apart! I'm just curious to know if this could in any way be related to my heart problem. Many thanks for any input. Snevetsii@aql.comJon.

Linda O's May 28 reply to Bonnie's May 27, 2003 - Hi Bonnie, I weaned off my HRT and still have trouble sleeping. When I was on the prescription, I slept like a baby. I often wonder if our array of different medicines help us to a great extent and hinder in another way? Linda O.

Lydia M, May 28, 2003 - Hello everybody, I have a really bad head cold and was wondering what CHFers can take. Aspirin? Cough syrup? Sinus headaches? I do not take blood thinners.
     I went to my cardiologist yesterday who is upping my potassium and Coreg because my CHF symptoms have been really bad. On top of that, I have this miserable sinus cold. If any of you can help me with my questions, it would be deeply appreciated. God love and protect you all, Lydia.

Hal, May 29, 2003 - Hi everyone, It'a a red letter day for me today. After searching for a CHF specialist that takes MediCal in my home town, I found one - 28 months after diagnosis - better late than never. The long waiting times and all day journies for a 10 minute once-over are in the past. Hurrah! The man's 10 minutes away by bicycle and acts like he actually cares about my situation, real care at last.
     I had to ask him the one question that's been bugging me about us CHFers and liquid intake. I was hoping he would explain in greater detail about why we should limit amounts of fluids but he didn't. He just said keep yourself well hydrated but with limits. I've heard 2 quarts and I've heard 2 litres. I would think it would depend on the size of the individual, right? Anyway, I'm thrilled about my new doc and still basically in the dark about this water issue. Exactly how am I hurting myself by drinking 3 or 4 quarts a day? That's pretty much all I drink - lots of bottled water and a beer now and then. I used to be the other way around. Who can straighten my out on this once and for all? Be well.

Jon's May 29 reply to Hal's May 29, 2003 - Hi Hal, It's a matter of fluid volume. The more fluid your weakened heart has to pump, the faster or harder it has to work. The more you drink, the more fluid that is in your body for your heart to deal with. It's called volume overload. One quart is basically the same as one liter in fluid volume measurement (one liter = 1.06 quarts). Are you really hurting yourself? Maybe, maybe not. It depends on who you ask and on your individual situation. Me, I prefer safe to sorry when it comes to maintaining my quality of life, which is often not so good anyway. ;-) Jon.

Betty L's May 29 reply to Lydia M's May 28, 2003 - Hi Lydia, You need to check with your doctor but what they told me get was chlorpheniramine maleate at 4mg. It's over the counter but I had to ask for it. It's an allergy/anthihistamine for hay fever, upper respiratory allergy symptoms, sneezing, running nose, and watering itchy eyes. It doesn't make my heart race. I also buy the good old saline solution in a little squirt bottle and spray up my nose at least 3 times a day. It's not real fun but it works to clear out the bugs and stuff. For sinus headaches - when desperate - ice packs sometimes work. I hope you're feeling better. Betty.

Susan B's May 29 reply to Lydia M's May 28, 2003 - Hello Lydia, My husband has CHF and he also gets really bad sinus headaches. We took his list of meds to the drug store and asked the pharmicist what he could take, given his meds and condition. Also, his PCP put him on another drug for seasonal allergies. He does well. When he is even a little bit ill with sinus headaches, we agressively treat it so that he will not get worse.

Mary Jo, May 29, 2003 - Hi, Do any of you use out-of-the-country pharmacies that are a lot cheaper than in the United States? I have looked into in Canada and they are cheaper but will not do insulin or take insurance. Even with my insurance, my pharmacy bills are sky-high on name brands. How do other people do it if you aren't on Medicaid or Social Security? Having to pay the 20% of 80% plus a 20 dollar copay is in the hundreds. Does anyone have any experience in getting your medicines more reasonably, or how do you get help? Mary Jo.

Lydia M's May 30 reply to Betty L's May 29, 2003 - Hi Betty, Thank you so very much for your reply. I called my cardiologist and he gave me the same advice you did about what I can take for cold and sinus problems. I am very gratefull to you. I am already feeling better. Lydia.

Lydia M, May 30, 2003 - Hi everybody, My blood tests showed that my potassium level was too low and my doctor upped the dose of my Lasix 2 days ago. I have been experiencing major muscle weakness and stiffness, especially in my arms. Has anyone here experienced that? Is it because of low potassium levels?
     My doctor is also increasing my Coreg dose. Can it be this? If anyone can help me with this, I would really appreciate it. Right now I am feeling scared with the way I am feeling. I will, of course, call my doctor. Thank you and God bless all of you, Lydia.
Jon's note: Could your cold be a flu-like virus?

Susan B, May 30, 2003 - Hello all, I normally write on the caregivers' board about my husband, but tonight I have a question from my mother. Mom is 64 years old and just found out that she needs a pacemaker. She has been very ill for the past 4 months. Until tests showed what she has, she was not visiting with me and my husband because of my husband's CHF. I talked to her on the phone every day to check on her. She has sarcoidosis, which affects her lungs and her heart.
     Her question is: What type of pacemakers are doing a good job? She did not want one but her cadio-doctor talked her into to it. He told her that she would feel much better. Thank you all, Susan Bratcher.

Dale, May 30, 2003 - Hi, My dad was diagnosed with CHF in December of 2001. He is 58 years old, which from what I hear is rather young to have this condition. The doctors have been adjusting his medicine since and just recently within the last month he has had a tough go of things. He currently is experiencing some of the same symptoms as when he was first diagnosed, like coughing, shortness of breath, nausea and stomach pains.
     I guess my questions are what should we be watching out for? Is this normal to experience up and downs? How long does it take for him to start having a better quality of life? He has had this stomach pain and pressure for about 3 months - is that part of heart failure? Should we be really worried? I am. He is going in for an echo tomorrow so if anyone reads this please pray for him. His name is David Entrekin. Thank you all and God bless. Dale.
Jon's note: Have you read The Manual yet?

Peggy A's May 31 reply to Mary Jo's May 30, 2003 - Hi Mary Jo, I'm glad to see that someone has raised these issues! I have thoughts along the same line. I found a Canadian pharmacy that had put an advertisement in my local paper and I clipped the entire ad out and went to the Internet and found their web site, even though it wasn't noted in the ad.
     I've been getting my medications switched over to the mail-order pharmacy my state agency uses because we get 90 days worth of medication for the cost of a 60 day supply. Well, my doctor switched me to Coreg and Mavik, and together they cost $153+ for the 60 day supply.
     The trouble is that I can't afford to pay $153+ every 90 days just for these 2 medications. Being a state government employee, I am underpaid. I know almost all state employees everywhere claim to be underpaid, but with me it's the truth, and our agency did receive raises starting in January I think it was, but I'm still not making adequate money. This puts me in a Catch 22. I can't attempt to change jobs because with my health situation, if I were to seek and accept a position in the private sector that pays a lot better, I wouldn't be eligible for that company's insurance coverage for a certain period of time and my pre-existing conditions wouldn't be covered for one year. At least, this is the way most group insurance coverage is set up so I'm stuck here.
     Does anyone have any ideas or suggestions on what I can do to try to get some help with my medical bills? Having these in addition to regular monthly household bills is threatening to bankrupt me. I mean, it's just about all I can do to pay the regular monthly household bills. Being saddled with the medical bills I'm starting to receive just adds stress to me, which is something I don't need. I've been trying to figure out how in the world I'm going to pay them. Getting a second job isn't an option because the particular job I have with the state doesn't have me on a fixed shift: I have to swap shifts every few weeks and I don't know what kind of second job I could get that would work with and around my primary job's schedule.
     Just getting this written and sharing it with y'all makes me a lot better. It gets a load off my chest. I hope someone has some ideas or suggestions on how I can deal with these issues. Thanks Jon, for providing this forum.

Jon's May 31 reply to Peggy A's May 31, 2003 - Hi, As I understand it, you need to rethink your ideas about health insurance under current US law. If you have coverage with your current employer, you have no waiting period in the US for starting coverage in general under your next employer. If you can manage not to have even a single day off between this job and the next, you should not even have a wait for your pre-existing condition. Please verify all this with a lawyer and then think about that private sector job. ;-) Jon.

Ann C, May 31, 2003 - Hi Everyone, I have been off this site for awhile and just wanted to see how everyone is doing. I am doing well. I am going in for my 2-year heart transplant annual next week. I have been maintaining a 1B status on my heart biopsies, which is not bad but not the best. I heard it is really rare to have a zero or a 1A.
     I am at home still, after trying to get myself together from all the years of sickness. I am keeping busy with writing and gardening (with gloves of course), and raising my almost grown children. I was wondering if there are any other transplant recipients out there who experience depression states on and off? I mean to the point of not really knowing why they are upset? It almost feels like being a survivor of a war, that thing where you flash back and feel all the emotions of the past years coming up like a tidal wave. I am not sure why I get that way, and I am on depression medication. I just dont understand why the most wonderful gift that was given to me, makes me so emotional.
     I question the fact that I coded on the table during surgery for 4 minutes, I question the fact that I was allergic to cyclosporine and it displayed leukoencephalopathy and put me in a coma for 4 days. I also wonder if the seizures that I am still at risk for might be doing damage to my brain. I am on anti-seizure medication.
     Any messages would be appreciated. I am just feeling a little down and I guess I need some encouragement. Thanks!

Valerie R's May 31 reply to Dale's May 30, 2003 - Hi, I was diagnosed at the age of 52. I have found this site extremely helpful and I echo what Jon says about reading The Manual! It does help, especially the advice on low-sodium and fluid. I will keep you all in my thoughts. Valerie R.

Joe S' May 31 reply to Hal's May 30, 2003 - Hi, Take my word that watching fluid intake is vital. In February, my noncommital cardiologist said I could regulate my own diuretic. Low and behold, before I knew it, my ankles doubled in size and I gained 10 lbs. Then I couldn't sleep for the pain and my situation became so bad I almost lost my mind. It took a psychiatrist to convince me to take a strong sleep aid and a new diuretic. I did and lost 30 lbs in 2 months and began to sleep much better. I can't believe the new laws prevent doctors from truly diagnosing us right. The old GPs seem sometimes to be the best in giving advice. Joe S.
Jon's note: There are no laws preventing any doctor from diagnosing a patient!

Cristina L's May 31 reply to Lydia M's May 30, 2003 - Hi, Regarding the stiffness and major muscle weakeness, did your doctor increase your potassium? That's definitely happened to me. Potassium should be checked regularly if you are on Lasix. Also, I never tolerated Coreg very well. As we tried to increase my dose, I would get terrible pain in my arms and legs. Make sure you get your blood pressure checked. Mine was so low, which is what was causing the fatigue and pain. Are you lightheaded and dizzy? I have since switched to Toprol-XL and tolerate it much better except of course I have developed asthma and bronchial problems from it. Next, I try Zebeda. Is anyone out there on Zebeda? Jon, is Zebeda as good as Coreg and Toprol-XL?
Jon's note: See and

Kathy's May 31 reply to Dale's May 30, 2003 - Hi, Prayers will be said but try not to worry, because worry never solved anything. This is new for your dad and there will be adjustments in medicines and foods and other things as he goes along. Just use the Internet to research the subjects of your fears and you will be equipped with the right questions when you do talk to the professionals. Continue to stand by him. Your support has already improved his quality of life. Kathy.

Nan S, May 31, 2003 - Hello all, I have a simple question I hope someone can answer. We have adopted a low-sodium diet of under 2000mg a day. My husband has never had edema. However, we are both continuing to lose weight on this low-sodium, healthy diet. Does the weight loss stop at some point? Neither one of us needs to lose any more weight. Thanks for your help. God bless, Nan.
Jon's note: What did you change in your diet besides sodium level?

Valerie R's May 31 reply to Nan S' May 31, 2003 - Hi, My low sodium diet is around 1,000mg per day, and I have gone from 102 lbs to a dry weight of 87 lbs. I'd like to gain some weight, but nothing seems to work. I used to eatmuch junk food and cake and cookies, and those are now out. If you figure out how to do it, please let me know. Valerie R.

Jon, May 31, 2003 - Hi everyone, Before I sink some real money into it, I'd like to know how many of you regular readers would like to see some good quality - not freeware or advertising sponsored - chat software going on this site. It would probably require a password for you to use outside any scheduled chat times but if so, it would require no fee or personally identifiable information aside from a first name and e-mail address. I am talking commercial chat room. Input and suggestions or ideas requested. Please send them to

Catherine, May 31, 2003 - Hi, I have mild idiopathic cardiomyopathy (weak left ventricle) and started heart drugs in January. I am currently on 2.5mg Altace and 50mg Toprol-XL. My doctor just doubled my Toprol-XL a couple of weeks ago.
     I'd like to visit Park City in Utah in August or September. The altitude there is 7000 to 10,000 feet. Does anyone with a heart condition similar to mine have any experience with higher altitudes? Of course I will ask my doctor and read Jon's site as well, but I wanted to know what some of you might have to say. Thanks a lot. Catherine.

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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