The paperwork never ends The Archives
July 1-15, 2004 Archive Index CHFpatients.com

Jon 7-1     quote for the day
 
Christine B 7-1     what caused this?
 
Clara D's July 1 reply to Scott Brown's June 30     retaining fluid
 
Lori K's July 1 reply to Janet H's June 29     beta-blockers and blood sugar
 
James' 7-1 reply to Janice's 6-28     coping with heart failure
 
Sharon JW 7-1     am in clinical trial, get new device
 
Ruthie A's 7-1 reply to Gatha's 6-30     back problems & foot pain
 
Roz' 7-1 reply to Ruthie A's 6-29     Provigil in CHFers
 
Ed B 7-3     seek recipes for Coumadin users
 
Ron 7-3     question for those with low EF
 
Jon 7-3     concerning recipes, quote for the day
 
Neel 7-3     seek low sodium, low potassium recipes
 
Joanne 7-3     update on Chelsie
 
Jeanene P 7-3     I am confused, should I worry?
 
Jon's 7-3 reply to Jeanene P's 7-3     learn, learn, learn
 
Janice 7-3     salt substitute question
 
Janice's 7-3 reply to Greta's 6-29     adjusting to heart failure
 
Jon 7-3     to Carl T
 
Jack D's 7-3 reply to Janice's 7-3     a replacement for salt that works
 
Vicki J's 7-5 reply to Lori K's 6-30     my Coreg & diabetes experience
 
Mike W's 7-5 reply to Roz' 6-29     article about Provigil
 
Jon 7-5     quote for the day
 
Jeff Anderson 7-5     flushing & high heart rate - anyone else?
 
Sandy's 7-5 reply to Ron's 7-3     my fatigue improved with CoQ10
 
Sandy's 7-5 reply to Jeanene P's 7-3     get a new doctor now!
 
Sherri 7-5     seek biventricular pacemaker experiences
 
Roger's 7-5 reply to Ed B's 7-3     low sodium eating
 
Valerie R 7-5     meds and vision
 
Mike C 7-5     I have some questions
 
Rick J's 7-5 reply to Jeanene P's 7-3     doctor recommendation in Nebraska
 
Rosy M 7-5     my dad died very peacefully
 
Susan B's 7-6 reply to Ed B's 7-3     Coumadin and diet
 
Marly's 7-6 reply to Jeanene P's 7-3     heart center recommendation in Nebraska
 
Ruthie A's 7-6 reply to Mike C's 7-5     don't blame it all on obesity
 
Linda Oline's 7-6 reply to Jeanene P's 7-3     heart center recommendation in Nebraska
 
Elizabeth K's 7-6 reply to Jeff A's 7-5     and to Mike C
 
Tom Campbell 7-7     do any of you actually feel good?
 
Jon's 7-7 reply to Tom Campbell's 7-7     many who feel good don't come here
 
Colman Dixon 7-7     insurance and recovery questions
 
Jon 7-8     quote for the day
 
Steve H's 7-8 reply to Tom Campbell's 7-7     don't ever give up
 
Jeanene P 7-8     thanks for all the replies
 
Tom S' 7-8 reply to Jon's 7-7     not feeling so good myself
 
Ruthie A's 7-8 reply to Tom Campbell's 7-7     some suggestions
 
Claudia S' 7-8 reply to Tom Campbell's 7-7     my experience
 
Elizabeth K's 7-8 reply to Tom Campbell's 7-7     people do get better
 
Robert 7-8     what does this mean, what should I do?
 
Valerie R's 7-8 reply to Tom Campbell's 7-7     people do get better
 
Roger Hugh's 7-8 reply to Tom Campbell's 7-7     people do get better
 
Mike C's 7-8 reply to Colman Dixon's 7-7     health insurance, having children
 
Cathy 7-8     my dad drives me crazy
 
Andy Pritchard 7-8     Raynaud's and numbness in extremities
 
Susan B's 7-8 reply to Linda B's 6-1     disability and EF questions
 
Renee 7-8     why the water retention?
 
Gatha E 7-8     seek those on Medicare & Tricare For Life
 
Bill 7-8     remembering what the doctor said
 
Dick 7-8     seek milrinone (Primacor) experiences
 
Tom S' 7-9 reply to Gatha E's 7-8     Tricare experiences
 
Roger 7-9     feel good but still come here & here
 
Mike C's 7-9 reply to Gatha E's 7-8     Tricare & Medicare experiences
 
Jon's 7-9 reply to Mike C's 7-9     devil's advocare on Medicare
 
Mike C's 7-9 reply to Susan L's 7-8     disability and nausea
 
Linda B's 7-9 reply to Susan L's 7-8     nausea and retaining fluid
 
Renee's 7-9 reply to Jon's 7-8     my husband's heart numbers
 
Betty Lee's 7-9 reply to Valerie R's 7-5     amiodarone toxicity experience
 
Clara D's 7-9 reply to Susan L's 7-8     getting accurate test results
 
Carla's 7-9 reply to Colman Dixon's 7-7     CHF and getting pregnant
 
Anne 7-10     seek similar experiences
 
Jim 7-10     seek knee replacement experiences
 
Clara D's 7-10 reply to Jon's 7-9     doctors, tests, records and venting
 
Gail 7-10     troubles with boss - any ideas?
 
Henry 7-12     what should I ask the doctor?
 
Sandy 7-12     what can I do?
 
Sandy 7-12     doctor and doctor assistant questions
 
Ron 7-12     seek experiences with altitude, travel
 
James' 7-12 reply to Tom Campbell's 7-7     coping with heart failure
 
James' 7-12 reply to Colman Dixon's 7-7     coping with heart failure
 
Susan L's 7-12 reply to Anne's 7-10     condolences and more
 
Sherri 7-12     amiodarone questions
 
Lisa Hammond 7-12     do I have CHF? and more
 
Cathy 7-12     low sodium diet is critical experience
 
Kim 7-12     PVCs & more - any ideas?
 
James' 7-13 reply to Lisa Hammond's 7-12     do you have CHF? & more
 
Jon's 7-13 reply to Lisa Hammond's 7-12     do you have CHF?
 
James 7-13     intolerance to heat - anyone?
 
Jon's 7-13 reply to James' 7-13     my experience only
 
Cathleen 7-13     please e-mail my mom
 
Greta's 7-13 reply to Lisa Hammond's 7-12     getting some answers
 
Greta's 7-13 reply to Ron's 7-12     high altitude experience
 
Susan B's 7-13 reply to Ron's 7-12     traveling & altitude
 
Jeff Anderson 7-13     runny nose when eating - anyone?
 
James' 7-14 reply to Jeff Anderson's 7-13     runny nose when eating
 
Lori K's 7-14 reply to Lisa Hammond's 7-12     see a CHF specialist!
 
Ruthie A's 7-14 reply to Jeff Anderson's 7-13     runny nose when eating
 
Dorothy's 7-14 reply to Jeff Anderson's 7-13     runny nose when eating
 
Dorothy's 7-14 reply to James' 7-13     problems with hot & cold weather
 
Sharon's 7-14 reply to Anne's 7-10     can you describe the visual disturbances?
 
Myrtle C 7-14     seek suggestions about meds
 
Yvette's 7-15 reply to James' 7-14     coping with heat
 
Cary Deen 7-15     like CHF doc in Florida
 
Jeff Anderson 7-15     thanks for your input
 
Scott Brown's 7-15 reply to Jeff Anderson's 7-13     runny noses
 


Jon, July 1, 2004 - Hello, The old quote for the day is: "When we sincerely decide to subjugate our will to God's will, and we make our own will secondary, it frees us from subjectivity." Rabbi Chaim Dovid Green. Jon.


Christine B, July 1, 2004 - Hi, I am 32 and I just found out that I have CHF. No one on either side of my family has heart problems. I am just wondering if being on the norplants caused this problem. I have had the nuclear stress test and I am having a T-wave test this month and I have to do the treadmill. I will have a procedure that will look at the right and left sides of my heart by a catheter sometime this month. I am really need some information on what could have caused this. Thanks for your help. christina72_99@yahoo.com


Clara D's July 1 reply to Scott Brown's June 30, 2004 - Hi Scott, I'm not on diuretics. So far they haven't been necessary. My heart is enlarged and very weak, with an ejection fraction under 15% but other than occasional mild fatigue, I have no symptoms - no edema and no shortness of breath.
     I agree that the entire 5-pound weight gain may not be the result of my brief sodium binge, but some part of it was. One look at my face would have convinced you that I was retaining fluid. Could it be that by limiting my sodium intake I have made my body more sensitive to sodium? I wonder. jdossett@nc.rr.com


Lori K's July 1 reply to Janet H's June 30, 2004 - Hi Janet, I was just having a conversation with my CHF doc a few weeks ago about beta-blockers and blood sugar. He said they all raise blood sugar but Coreg reduces insulin resistance and therefore lowers blood sugar over time. Marc Silver talks about insulin resistance in his book Success With Heart Failure. I'll be a one-dog study and let you know, since my blood sugar has been rising while on beta-blockers and I switched to Coreg a month ago. Take care. Lori K. thegoof86d@aol.com


James' July 1 reply to Janice's June 28, 2004 - Hi Janice, A number of us have bios up on the site that talk about any of a number of things relating to our heart conditions and CHF. You'll want to go through The Manual as well. This site is an enormous resource for those who are new to this condition. The two biggest things you'll see here are diet and life style change. CHF is not the end, but it does require your attention.
     You'll need to drop to no more than 2 liters of fluids (soda, juice, water, coffee, etc.) each day and no more than 2000mg of sodium each day. That latter point is a tricky one. Be sure to read the site's information on a low-sodium diet. The short of it is that you'll be eating fresh foods and precious little processed food. A bread machine is a good addition to your kitchen since store bought bread is high in sodium and other junk, but homemade tastes better and you can leave out the salt.
     Peruse the site and you'll get a handle on it. If you have any questions, post to the discussion board. If you're uncomfortable about asking something in such a larger forum, feel free to send me an e-mail. You'll find many of us here are just as willing to talk off-board as on. jnj@spamcop.net


Sharon JW, July 1, 2004 - Hi, I was accepted into Guidant's Renewal 3 (ICD) clinical study, if there's enough room to pass the LV pacing electrode. Ultrasound says yes, but we'll see on Tuesday. I will get a new device that synchronizes ventricles, paces me 100%, defibrillates ventricular tachycardias and with luck will terminate the problem of atrial flutter/a-fib I've been plagued with recently. Here's hoping. Best to all. sparkywilliams@att.net


Ruthie A's July 1 reply to Gatha's June 30, 2004 - Hi Gatha, I had a laminectomy in 1999 to relieve pressure on my spinal cord caused by disk material from the L4/5 disk. The spinal cord damage I sustained has resulted in numbness and tingling from my knees to my feet. Neurontin has helped make the discomfort tolerable. Then I developed diabetes and after only 3 years I have been diagnosed with peripheral neuropathy (more numbness and tingling) in my feet.
     I learned to figure out where the pain originates just from where on my feet it is. If my feet hurt on top, it's most likely due to peripheral neuropathy and high blood sugar. Pain in the soles of my feet is usually radiculopathy (numbness and tingling caused by nerve damage in my back). If my feet hurt on both sides, then I'm really in trouble! <lol> I wish you the best with your back. Ruthie A. rlaba51@yahoo.com


Roz' July 1 reply to Ruthie A's June 29, 2004 - Hi Ruthie and Margaret D (and Jon, of course), Yup, that warm fuzzy feeling I have had for a couple of days is the result of having perfect strangers care enough to want to help and who write with advice and concern in answer to a query. Thank you all for your concern.
     About Provigil for sleepiness and fatigue, I was given the prescription by my doctor so casually that I immediately took it first to Jon's index, then to my formerly useful copy of the PDR, and finally to Google. I read all the scary stuff you describe Margaret, and waited to fill the prescription until my next doctor visit, armed with all the negative things reported about this interesting, mysterious "racemic" compound. His response was an encouraging, albeit trifly dismissive comment, "Tut tut" - I believe that was the technical phrase. So I tried Provigil the next morning and was so pleased with the result that, assuming like chocolate, anything this good must be bad for me, I wrote to you all on the message board for reassurance. Incidentally, the New York Times Science Section devoted an entire page to Provigil that very afternoon, 6/29.
     As Ruthie reported, after clinical trials of its use in treating narcolepsy and much attempt on the part of researchers, the mode of action is still unknown. It has an amphetamine-feel to the patient but the brain remains "clean." The effect lasts approximately 15 hours and then is completely gone and you sleep, deeply and normally. Unfortunately, I rather imagine that misuse will occur among students, truck drivers, emergency residents who seldom get a healthy quantity of sleep. The effects of sleep deprivation are fairly well known and this may be a problem down the road.
     I am blessed with two marvelous pharmacists who seem genuinely interested in one's meds and they called to ask what I thought about the effects of this one. I anecdotally related my response to my short period on the medication, a rather dramatic increase in mood and energy. They are looking but have yet to supply me with any journal citations on its use in CHFers who whine about fatigue, but will continue to search their esoteric sources. If they come up with something I shall share it with anyone who might be interested.
     I share Ruthie's hesitancy about the use of any drug, but especially one with such a limited trial as this one. However, I hope to continue with this one, as my quality of life is so improved. The down side for me is that it is expensive and I have a thrifty soul and it tends to make me verbose, long-winded, and in danger of writing much too long a thank-you note. Bless your hearts. Be well. Roz. rwarriston@AOL.com


Ed B, July 3, 2004 - Hi, Thank you in advance for the help and effort and time given to people like me who need as much encouragement and faithful support as we can get. I was wondering if you had a resource for recipes for people with valve replacement on Coumadin therapy. There are so many dietary restrictions as far as vitamin k and green leafy veggies, it's very hard to adjust a diet for someone who has heart failure and is a diabetic as well as being on coumadin therapy. Thank you in advance. Ed B. edmrb@aol.com


Ron, July 3, 2004 - Hi, Again, I want to thank everyone who participates on this board. It is comforting to hear your responses on coping with CHF. How many of those with a low EF (10 to 15%) are just experiencing tiredness many years after the initial diagnosis? So far this is the only symptom that I am experiencing but I have just recently been diagnosed. Thanks. ronr@kw.com


Jon, July 3, 2004 - Howdy-doo all, Ron's post reminded me I wanted to post my own request last week and just plain forgot. If you have a favorite low sodium recipe you'd like to share, I could use some new ones for Kitchen Corner. I have been too busy and too tired to put up many new recipes. I may not put up all the ones sent, but some will make it! Just e-mail them to me.
     Here's the quote for the day: "No people will tamely surrender their Liberties, nor can any be easily subdued, when knowledge is diffused and Virtue is preserved. On the Contrary, when People are universally ignorant, and debauched in their Manners, they will sink under their own weight without the Aid of foreign Invaders." Samuel Adams, 1775. Jon.


Neel, July 3, 2004 - Hi, My brother has end-stage dilated cardiomyopathy. Last weekend, we were in the hospital because his kidneys started failing. He is now on a low sodium and low potassium diet. Is there anyone else who is experiencing this? If so, what are you doing? Do you have some recipes? Thanks, Neel. neelstallings@earthlink.net


Joanne, July 3, 2004 - Hi Everyone, Chelsie went back to the cardiologist Wednesday. The visit went well. Her heart is still handling the extra volume well, with the help of her meds. At the last visit she was to do no physical activity that was not necessary. The doctor now wants her to start walking for 15 minutes 3 times per week, but no more than that.
     Her aortic valve has narrowed a little bit since the last visit so they are keeping a close eye on her aorta to make sure it does not start to enlarge. She still gets tired but they still think it is better to wait to do any repairs. They would like to continue to wait until she is done growing or until things are at a point where they could cause permanent damage to her heart. They said that if they replace valves now they will have to replace them as they grow.
     Anyway, the visit went well over all. They are pleased that the medications are still working to help her heart deal with the leaky valves and are not concerned at this point that any damage is being done to the heart muscle itself. mjcb@northstate.net


Jeanene P, July 3, 2004 - Hi all again, I went to that "specialist" here in southeastern Nebraska, made his house payment and possible paid off some of his student loans. That's about how impressed I was. I asked when I made the appointment if they needed my records from the echo, treadmill tests, etc,..., and they said no. Then this doctor informed me when he asked me why I was there, and I started telling him my problems, that he had no clue what I was diagnosed with. Maybe he should have taken the time to get those records.
     I called my doctor over a month ago and she returned my call yesterday. She said the swelling I was having yesterday was from humidity. She also told me to stop weighing myself every day. Then she gave me a diet to follow - is anyone familuar with the DASH diet? Eat breads, pastas, fruits, veggies, but watch the meat. This is for a high blood pressure diet but my blood pressure runs 90/50, and when it's high it's 120/80. When I asked her about being winded she told me to take my inhaler, which I have not had to use since February, when I quit smoking. She said it can't be my heart because my CHF isn't that bad, so it has to be my lungs.
     Should I be concerned? I am at the point of saying, "what's the point?" She said my EF was 80 and BNP was 46, which is pretty good so am I getting all worked up over nothing?
     The meds were from 2 different doctors. I changed doctors since the one I had been seeing was several miles away and seemed really unconcerned. I no longer take the triamterene. As I said, my blood pressure was really low so my current doctor stopped it. Now however, she thinks I have high blood pressure and I have to keep telling her I don't! She also said I don't have CHF, but I do have diastolic dysfunction. Now I am really confused! I had better close for now before this becomes a novel. Again, thanks for the great site. Jeanene. mp20217@alltel.net


Jon's July 3 reply to Jeanene P's July 3, 2004 - Hi Jeanene, I am basing this on one short message, I am not sure I am "getting" all you are saying, and I am not a doctor. However, one painfully obvious conclusion is that your current doctor is totally ignorant and therefore terribly dangerous to you personally - get a different doctor. If it were me, I would fire them all and get a new PCP and a new heart failure specialist immediately!
     Diastolic dysfunction is as likely to cause heart failure as systolic dysfunction. You desperately need to educate yourself so you know what needs to be done to keep you alive. Diastolic dysfunction can lead to pulmonary hypertension, severely weakening the right side of your heart, so your too-high EF is a real cause for concern. You need to have your DHF properly treated right now.
     Needless to say, if a doctor can't even keep straight whether you have high blood pressure or not, fire him immediately. Are you going to continue entrusting your very life to such people? Not weigh yourself every day? This is one of the most basic and highly recommended steps for managing heart failure ever to come down the pike. Make the effort to learn, and make the effort to find the right doctors for you or you will pay big-time.
     Your current dietary concerns should be primarily low sodium. Follow the links in this post for more information. Jon.


Janice, July 3, 2004 - Hi, I was wondering if anyone can tell me about the salt substitute recipe that I found at Jon's Place under condiments. Is there a limit to how much of this you should use? I am planning to try it today and don't want to use too much. janicecosgrove@earthlink.net
 
Jon's note: These are just made of herbs and spices. See www.chfpatients.com/rec/sodium.htm for sodium content of the ingredients.


Janice's July 3 reply to Greta's June 29, 2004 - Hi, I have read The Manual and it did help. I also have found some great support from some of the people here at Jon's Place.
     I am not working. I left my job a year ago to work with my husband Dave at our small graphic design and imprinting business. After leaving my job I left behind my insurance so I am trying to get help for some of these bills and then I plan to attend cardiac rehab. I do go to rehab once a week and she gives me more direction on what to do and not do since this is all new to me. Right now she has me walking on a treadmill 4 times a day, 7 minutes at a time. The first week I started out at 5 minutes and it almost killed me. Then she asked about the incline of the treadmill (duh) and after leveling out the treadmill I can do the 7 minutes and it doesn't kill me. janicecosgrove@earthlink.net


Jon, July 3, 2004 - Hi everyone, Carl T, you sent me an e-mail through Jon's Place and my reply bounced. Please send me your correct address. Thanks! Jon.


Jack D's July 3 reply to Janice's July 3, 2004 - Hi, I'm a staunch advocate for what must be called a "replacement for salt." That replacement is citric acid crystals. It's something that is used already in many foods, drinks and even candy. It does 3 things that salt does: It acts as a preservative, if you sprinkle it on a cut apple, avocado or any fruit the fruit will not become discolored; it kills germs on surfaces (even skin); it stimulates your salivary glands. None of these herbal "food treatments" have those qualities.
     The only drawback to citric acid crystals is it doesn't taste good on beef. With all other meats and vegetables and even fruits, it works great. You can find it in large supermarkets in the Jewish section labeled as "Sour Salt." Under the Sour Salt label it is expensive but you can find it on the Internet for around $1.00 a pound. maddjak@hotmail.com


Vicki J's July 5 reply to Lori K's June 30, 2004 - Hi Lori, I was on Coreg 25mg twice a day and was doing okay with my diabetes. I had gotten off insulin shots and was only taking a Glipizide 10mg by tablet. My heart rate stays around 115+ so they upped my Coreg to 37.5mg twice a day to try to lower my heart rate. My blood sugar went up to 500 and I was taking massive doses of insulin: 80 units Lantus in the morning and 80 units of Humalog with meals and snacks. I also had a sliding scale if it went over 200.
     The higher Coreg dose didn't do anything to slow my heart rate so they cut back my dose to 25mg twice a day. I started bottoming out on my sugar so I started lowering the Humalog and finally stopped it altogether and have cut my Lantus to 40 units and my sugar is under control. I also gained 40 lbs when they raised the Coreg and it's coming off now that they lowered it. I hope the Coreg doesn't affect you the way it did me because I know it's one of the best heart failure drugs. Good luck! Vicki J. vj6464@aol.com


Mike W's July 5 reply to Roz' June 29, 2004 - Hi Roz, There was a pretty big article about the drug in the New York Times a short while ago at www.nytimes.com/2004/06/29/health/29wake.html. Registration is required to get the complete article. Peace, Mike Wafkowski. mikeyw@sohogurus.net


Jon, July 5, 2004 - Hi everyone, A short quote today: "Whatever makes men good Christians, makes them good citizens." Daniel Webster. Jon.


Jeff Anderson, July 5, 2004 - ello, I've been looking around for about a week and am simply amazed at the wealth of information available here. Thanks for making it all available.
     My CHF history probably dates to at least 1998. I am lifelong anal-rententive, obsessive-compulsive and have IBS, periodontal. In October of 1998, I had 2 bouts of pancreatitis bookended by a laparoscopy and an endoscopy to remove gall bladder and stones. I have been unable to return to my physically very active former self. I need hours of recovery after minimal amounts of exertion. I have severe allergies and numerous infections that always lead to bronchitis. I have diagnosed asthma, abnormal pulmonary tests, and am unable to use steroid inhalers.
     I saw a cardiologist in June of 2002. I "passed" a treadmill test but was personally very disappointed in my abilities. I was told, "You are 53 years old." I was advised I have a heart murmur, and an echo showed a bicuspid aortic valve. (Jon's note: An aortic valve with 2 leaflets instead of the usual three) I was told these were "unrelated to your symptoms, see me again in a year."
     I got a second opinion with more tests - nuclear perfusion with exercise, angiogram (cath) showing my arteries clean, a valve badly stenotic so recommended valve replacement. My aortic valve was replaced in October of 2002. The AV node was damaged or did not heal, so a pacemaker was implanted the following week. I had improved breathing and energy recovery times, limited return to physical activity, and continued to have high heart rate incidences.
     I had severe chest pain in August of 2003 so had an ovenight hospital stay and was diagnosed with "indigestion" and given Zantac. A follow-up with cardiologist resulted in, "see me in a year." In November of 2003 I woke up from a nap with a cramp in my right foot. Upon standing, I had 80% paralysis on my right side. I was hospitalized and diagnosed with a probable TIA. Sensations all returned within 48 hours.
     An echo shows my EF at 15%, TEE shows valves fine, confirms 15% EF with significant enlargement and thickening of the heart. I changed cardiologist for the third time to the lady performing the TEE and have since been treated aggressively from December of 2003 for CHF. I take Coumadin, aspirin, Coreg, lisinopril, digitek, lipitor, and spironolactone. I am on a low sodium (2000mg) diet, immodium for IBS, and nortriptyline for IBS and depression. I had a BiV pacemaker/ICD implanted in March of 2003. A cath confirms that my arteries are still clean. My next echo is scheduled for August, 2004.
     My question is, I still am working full-time but that alone exhausts me. I continue to have incidences of high heart rates. It rises to 100+ beats per minute from sleep to bathroom urination 20 feet away in my 3 visits in the middle of night, though not high enough for the pacemaker/ICD to respond. I have at least daily sessions of becoming extremely flush when my cheeks feel hotter than any fever I have ever experienced. There seems to be no consistency in when and for how long these flushing sessions last. I have dizziness that recently included seizure-type falls causing significant bruising. This is why my Lasix was discontinued and the spironolactone dose cut in half. I still have dizziness but no falls with careful postural changes.
     Does anyone else have similar experiences to the flushing and high heart rates even with or because of drug treatment? My flushing spells have occured for 6 years but have worsened in intensity recently. Again, thanks to Jon and all of you, for being here. Portland Oregon seems to have no heart failure support groups, but thanks to y'all I have found mine. Jeff A. uagain51@hotmail.com


Sandy's July 5 reply to Ron's July 3, 2004 - Hi, My EF has gone from 12% to 20% just recently and the tiredness - it's a pain but after doing some reading on CoQ10 and taking it 4 weeks now, I'm feeling so much more energy. The stuff works for me! I have the Mega Q-gel and take 100mg daily. It is expensive ($51 for 60 tablets) but for me it's worth it. I know 4 weeks is not enough time but I'll continue taking it and will let you know how I feel in another 4 weeks. Good luck to you. bleuskiiisgrl@yahoo.com


Sandy's July 5 reply to Jeanene P's July 3, 2004 - Hi, Please get a new doctor now! Don't wait - get in your phone book and ask before you go for an appointment, "Do you specialize in CHF?" All the info you told us is so wrong. Your doctor has no idea about heart failure. In the meantime, stop all salt going into your body and limit your fluid intake. A good CHF doctor will give you so much information and all of their time, to help you. Good luck to you! bleuskiiisgrl@yahoo.com


Sherri, July 5, 2004 - Hi, I am a family member of a CHF patient and have recently found this site. I'm really impressed by the site and all the info. I was wondering if anyone had recently had any device implantation, specifically a 3-lead pacemaker for biventricular pacing. My family member had a 2-lead pacer put in last year and now the doctors are talking about a 3rd lead. I've read some info that says the procedure can be risky but also a lot of good stuff about it too. If anyone has any experience with this, it would be great to hear from them. email_src@yahoo.ca


Roger's July 5 reply to Ed B's July 3, 2004 - Hi, I guess what works for me is lots of fresh fruits and veggies now that summer is here. I have type 2 diabetes (no pills - just diet and exercise) and CHF. I'll tell you a cookbook that really helped me was the No Salt-Lowest Sodium cookbook. I use it all the time. I modify the recipes here and there too, just sort of made up my own modified eating plan for the rest of my life. I am not on a diet. I can get away with cheating on the sugar end (but in the end it shows up on the A1c) more than I can on the CHF, which if I go much over 300mg sodium a day I can put on a couple of pounds. Feel free to e-mail me and I'll try to help all I can.
     This is a truly great site and we can all share what works for us without being put down, like on some of the other sites I've been on. Thanks to all of you! rkharmony@highstream.net


Valerie R, July 5, 2004 - Hi everyone, I had an interesting overnight experience: My right eye went blurry and stayed that way for 2 days. My optometrist sent me to a group of opthamologists. The doctor said I had a cataract, very common even for people in their 40s and I am older. What's of interest is that he is having me come back Friday for a side vision test, also called a visual field, to see if any of the meds (probably amiodarone [Cordarone]) have caused damage to the optic nerve. Evidently this is a test we need for some of our meds.
     I like this doctor. He has my sense of humor. He said I will need eye surgery down the road, and I asked him if there was an alternative. He said, "Yes, you can jump off a tall building." vgrogers@aol.com


Mike C, July 5, 2004 - Hi, I'm new to the board here. I'm a 46 year old male with mitral regurgitation diagnosed a year ago. Symptoms before diagnosis included PVCs and PACs, and a couple of brief bouts of a-fib. I was originally diagnosed with panic attacks. I was reluctant to go along with the diagnosis but they prescribed Xanax and that relieved my anxiety overt the PVCs. Eventually one doc ordered an echo and found mitral regurgitation and moderate left heart enlargement. Then I was told to lose weight, go on a low sodium diet, and take blood pressure meds (verapamil for irregular beats, ACE inhibitor just added along with Lasix for blood pressure control). The diagnosis today is hypertensive heart disease and mitral regurgitation.
     I have been having more problems recently and it is difficult to get an immediate appointment (I go to VA clinic), much less an immediate echo. Problem number one is that in the last 3 months I have new onset swelling in my feet (left worse than right), mild pitting along the inside of my shin. It is worse depending on sodium intake or when taking a long trip but resolves after 2 days.
     How bad does edema get? Has anyone else taken CCBs like verapamil and had edema? If so, was the onset 6 months after starting meds? I am wondering if it is a worsening heart condition or medicine-induced.
     Problem number two is that for about 3 months now, I am constantly clearing my throat throughout the day but don't have an all out cough. I don't wake up coughing nor do I suffer (yet) from orthopnea. I am on a CPAP with oxygen so this may help).
     How bad is this cough associated with pulmonary congestion? Does it occur shortly after going to bed or is it something that wakes you up in the middle of the night? Does it start out as clearing of the throat or is it an all out cough? Does it occur all day long?
     Problem number three is that I can walk a reasonable distance, maybe a mile (I haven't tried to push myself). I ride an exercise bike at low resistance for about a half hour. I stay away from stairs like the plague. How fast can you decompensate and go down the drain? It seems that within one year of this diagnosis (even before my next scheduled echo), I am getting significantly worse.
     What kind of problems causes you to go to the ER for CHF? Is it serious SOB or something else? Do you ever get cyanotic?
     Problem number four is that I have a low oxygen saturation. At best it runs around 96% and on average about 92%. One doc tells me that this is secondary to my weight and says I "can't aerate properly because of fat under the diaphragm." Another doc says it may be pulmonary hypertension. Another says maybe CHF or secondary to to mitral valve regurgitation. Does anyone else have low oxygen sats?
     My big question is: I read that average life span after CHF diagnosis (barring transplant) is between one and 3 years. Any better numbers out there? Feel free to e-mail me directly too. I would love to share info with others. Thanks for your help. emike_c@hotmail.com


Rick J's July 5 reply to Jeanene P's July 3, 2004 - Hi, If you live in southeastern Nebraska I recommend The Nebraska Heart Institute in Lincoln, Nebraska. They have taken very good care of me and my CHF, and I would recommend them to anyone. They have a program called The Lincoln Heart Improvement Program and all the people that have treated me there are top notch. E-mail me if you have any questions. Good luck, Rick. glimmertwins3472@wmconnect.com


Rosy M, July 5, 2004 - Hi folks, My Dad succumbed to CHF on June 17th after a very long battle. He was very courageous and refused to give up until the treatments weren't working any more and there was nothing left that would help. Jon's web site is so informative and has been a tremendous help.
     Jon had responded to me a few months ago when I'd asked about how CHF patients die. His response was factual, and it was comforting to know what the end could be like. For my dad, the end was very peaceful. He had been in the hospital for 5 days, and the IV Primacor wasn't helping anymore. He slept more and more, but we had time to say everything that needed to be said. He knew that angels were coming to bring him home to Jesus. In his last 24 hours, he requested a small dose of morphine so that his shortness of breath wasn't vexing to him and it allowed him to relax. While asleep, his breathing changed its cadence and then slowed to a stop. He had no discomfort and was very peaceful. Rosy. jacobsens@gci.net


Susan B's July 6 reply to Ed B's July 3, 2004 - Hello Ed, My husband is on Coumadin therapy as he has been in a-fib 2 times. He has DCM. I think that you should talk to the doctor again about the dietary restrictions as far as vitamin k and green leafy veggies. If you eat the same amount every day, then the Coumadin can be adjusted to your diet. My husband eats greens every day.
     I would make my diet livable and then adjust the Coumadin to the diet. Check with the doctor first, but that is what we are doing with my husband's diet. He has gout so the veggies are a big part of his diet. If you don't know, meat is limited with gout. Good luck, Susan B. gbratcher@kc.rr.com


Marly's July 6 reply to Jeanene P's July 3, 2004 - Hi, I have only the best words for the Lincoln Heart Improvement Program of the Nebraska Heart Institute. They even have a new Heart Hospital in Lincoln where I had my pacemaker upgraded to a 3-wire one last April, 2004. NHI also has outreach clinics in several parts of Nebraska. Call them at 1-800-884-0894. Good luck! mcardenas48@hotmail.com


Ruthie A's July 6 reply to Mike C's July 5, 2004 - Hi Mike, I am sorry you are in this leaky boat with the rest of us but since you are here, welcome. I am going to answer only two of your questions. First of all, don't believe any numbers you read about the mortality rate of a CHFer - they simply aren't true! Those figures were probably an entire generation or two ago, and don't take into consideration all the wonderful new medications and treatment protocols available now. I have had CHF for 6-1/2 years and some of the medications I now take daily without thinking were not even on the market then! The trick for handling what you believe to be a shortened life is to not think about it. Just live! Take each day as it comes, and relax. Now is the time to enjoy your life, and make it fulfilling and full of purpose.
     Second, don't let anyone tell you that what is wrong with you is because you are fat! I am morbidly obese and have an oxygen saturation of over 99%. When I am severely decompensated and short of breath, my saturation won't go below 96%. That sure makes it difficult to get the ER team to understand that I'm in trouble! ;-) But to say that you can't breathe properly because the fat under your diaphragm is putting more weight on it (excuse the pun) than is due. Granted, our fat does complicate matters and it can even cause us to struggle with adequate breathing, but it's not always the underlying cause of SOB.
     It burns me that physicians blame all a person's illnesses on obesity. It is bad, and a lot of people have to change a lot of things in their lives to be and stay healthy. If you take care of yourself, eat right, limit your fluids and sodium intake, and exercise moderately, you should do fine. Although I have a lot of medical problems, I am feeling better now than I ever have. I am still obese, though the pounds are slowly coming off and I actually am in better physical shape than I ever have been. If I get a doctor who blames my fat for everything from the arthritis in my fingers to my ingrown toenail (I kid you not!), he doesn't last long in my employ.
     Okay, I'm off my stump now, Jon! <lol> Ruthie. rlaba51@yahoo.com


Linda Oline's July 6 reply to Jeanene P's July 3, 2004 - Hi, I highly recommend the Lincoln Heart Institute and Improvement Program in Lincoln, Nebraska. My personal cardiologist is Rebecca Rundlett. They have a heart hospital there and it is a big group. Tom Osborne, the Nebraska football coach, had his procedure done there. I hope you find someone that is compatible for your case. Linda Oline, age 64, EF 25%. lnoline@hotmail.com


Elizabeth K's July 6 reply to Jeff A's July 5, 2004 - Hi Jeff and Mike C, too. I am glad you both found Jon's site - it has great stuff. I'm not far from where you are, with a silent heart attack 10/18/03, diagnosed 11/01/03. Facts and education are your best friends.
     Jeff, you sound like a natural for tracking the data you need to. I'm a retired engineer and my cardiologist loves my charts and graphs. Your retentive nature will serve you well, it just takes patience. I'm still adjusting to drugs, many are, as you read, learn more and hear other's stories you'll get the sense of balancing what nature no longer does for you.
     Mike, my ankles were the same size as my thighs. I remember grousing to a nurse, "Heart attack schmart attack, I will not live with fat ankles." Little did I know. Jon has some great info on fluid retention, not the least of which is that the stuff hangs out everywhere, including the stomach, making problems absorbing the meds. You'll want to read all about it to get a better handle on controlling it. Most important, don't miss Jon's great analysis of the Framingham study. There are statistics out there that will scare you right back into Club Med. A lot of them are recycled and old, and predate some of the new and very effective meds. As a retired engineer who was educated by the Jesuits, I recommend it for clarity and logic (not an accolade I pass out lightly).
     For myself, I remember the second night I lay in CCU, terrified, full of the same numbers you are hearing now. My sister came to visit and announced she'd just passed someone sitting in the drivethrough, in a snowstorm in a wheelchair, a robe and blue hospital fuzzy feet. She and her family were smoking cigarettes and eating Cheetos. We decided then folks like that could be part of all those statistically scary studies too, but we still had a little power left to be in the more positive numbers.
     Wishing you both the best. WmOccam@aol.com


Tom Campbell, July 7, 2004 - Hi to all, I was diagnosed 15 months ago with DCM and arrhythmia. My docs (both heart and head types) keep telling me to keep hope alive that I am going to feel better. They've been doing so for 15 months and over that time I feel worse, with SOB, weakness, fatigue, nausea and sometimes pain in my legs. When I ask, they say it's possible I will feel good like I used to feel: Energetic, strong, no SOB.
     I want to know whether I am being fed stuff or whether feeling good is something to which I should realistically aspire. Has anyone with CHF "felt good" again after diagnosis? I appreciate and respect what the contributors to this board have to say, but I also wonder if there are people with CHF out there who have gotten past their symptoms, are "feeling good" again and so don't visit this board. cast.nettomcam333@comcast.net


Jon's July 7 reply to Tom Campbell's July 7, 2004 - Hi Tom, You are quite correct that many people who drastically improve simply stop coming here. After all, why should they? <g> I think a lot of us are like me. I feel quite good sometimes, quite bad other times, and in between most of the time. I can live with that. :-) Jon.


Colman Dixon, July 7, 2004 - Hi, I just found site. I found out I have CHF on Thanksgiving of 2002. My mom passed away 2 months earlier. My week in the hospital left me with a lot of unanswered questions. Some I know the answers to and some I don't.
     What I really want to know is how I can get health insurance now. I thought I had insurance at work but they later told me after I was in the hospital that I did not have it and reimbursed me the money I put in it.
     Also, does anyone know how long it will take to get back to doing the things I was used to doing? It's been almost 2 years and I still cannot walk for more than 20 or 30 minutes without having to sit down and rest. I am 31 years old. Will I be able to have kids? I have been so depressed lately. I feel so worthless having to depend on others to do for me. How can I feel better about myself? colman913@hotmail.com


Jon, July 8, 2004 - Hi there, Here's the quote for the day: "People - they're the worst." Jerry Seinfield. Jon.


Steve H's July 8 reply to Tom Campbell's July 7, 2004 - Hi Tom, I was diagnosed in 2000 with CHF. I was in a-fib and my heart rate was over 140. I also was drowning in my own fluids. The doctor was very nice and worked and got everything under control. He did not act like I would live very much longer and I felt like I would have to agree with him. I had SOB and was weak, dizzy and about everything bad you could feel. My heart was very enlarged and barely pumping any blood.
     After all the medicine and good living on my part, I actually did what the doctor suggested. My heart is now back down to almost normal and I feel better. I still have CHF and could bite the big one tomorrow but I feel better overall. I am not where I was before this started and will probably never be, but I plan on being around for a lot longer. My doctor even talks like I have a lot more time now.
     My main suggestion for anyone diagnosed is: Don't give up. Listen to your body. If you are tired, take a rest. I have at least a nap or two a day. You will have good days and bad days, just don't overdo it on the good days. I hope this helps. Steve. wwarthog@altel.net


Jeanene P, July 8, 2004 - Hi all, Thanks for the input. I thought I was contacting Linclon LGH when I made the call. I somehow got hooked up with Omaha instead. I am sure this young doctor is very good at what he does, I just don't know what he does. I feel he has an attitude. One thing I do know and would like for them to know is that they are working for me. I have hired them, so to speak, to assure that I am in good health. I pay they very well, I might add.
     I was hoping to get an appointment with Dr. Krueger at LGH. He is my mother's heart doctor. I am to meet with the other cardiologist Monday and then I will make my decision as to what I am going to do. I know I have had 2 blood tests done since my last message and have not heard back on either one of them. I guess no news is good news. Again, thanks for your messages and this wonderful site. Jeanene P. mp20217@alltel.net
 
Jon's note: No news is just no news - they should call you with the results!


Tom S' July 8 reply to Jon's July 7, 2004 - Hi, Then there are those of us who can barely sit up to eat, let alone sit up and type an entry to start a one person pity party on an Internet forum. Oops, did I just do that? bigheart@muchomail.com


Ruthie A's July 8 reply to Tom Campbell's July 7, 2004 - Hi Tom, I'm one of those people who like you, wondered if I would ever feel decent again. The first year after being diagnosed with CHF saw 5 visits to Club Med and months of doing nothing but rest. I know how discouraged you are right now but I am also one of those people who have gotten much better and feel really good most of the time. On those bad CHF days that we all have from time to time, the contrast is so drastic that sometimes I get scared, until I realize that I had just forgotten how rotten a body could feel.
     Several things I would like to suggest: (1) Relax. Being uptight about whether you are going to feel any better tomorrow robs you of today's enjoyment. Do what you are able to do today and be thankful you are still alive. Then don't worry about the rest of it. What happens, happens.
     2) Are you seeing a CHF specialist? It is absolutely vital that you include a CHF specialist on your team. A regular cardiologist is not knowledgable enough to handle all the complex issues of CHF. I found this out the hard way. I didn't start feeling better until I consulted a CHF specialist, who was able to address my individual needs.
     3) It is most imperative that you restrict your fluid and sodium intakes! I can't stress enough how important this is. Any extra fluid built up in your body stresses out your heart as well as other organs, and makes you feel really lousy. You need to be doing all your cooking at home so that you are in control of the amount of sodium you eat. Be sure to include lots of fresh fruits and veggies in your diet now that it's summer. Healthy eating and moderate exercise will go a long way toward making you feel better.
     4) Educate yourself. There are a gazillion pages and links on Jon's site to get you started. The more you know about your illness, the easier it is to take control of your life. There is nothing so debilitating as fear of the unknown. It can paralyze you into inactivity, and wild imaginations can run rampant. Learn. Ask questions. Read. Ask questions. Be sure you understand what your doctor is telling you at each appointment. Do not leave until you are clear and have every question answered. Along with this, learn to include your pharmacist on your team. Don't be afraid to call and ask him questions about your medications. He will be more than happy to help you understand what you need to know so that you can comply with your doctor's prescription.
     All these suggestions are probably things you already know, and perhaps do. Sometimes it's good to go over them again as a gentle reminder, and as a checklist to make sure we are doing everything in our power to have the best quality of life possible. Ruthie A. :-) rlaba51@yahoo.com


Claudia S' July 8 reply to Tom Campbell's July 7, 2004 - Hi Tom, I am one of the people that has improved. I do still read the board most days, now more to help others than for myself. I know what it is like to feel tired. When I first got new carpeting, I was exhausted just going from one room to another. It was like walking in soft sand, for me horrible. I thought I would have to tear it all out.
     My EF used to be 15% but is now 65%. My heart used to be very enlarged, now it is normal size and function. I read often on the message boards how some have bad days, and some have some good days. I did too!
     For me the answer was a sleep study, where it was discovered my oxygen level dropped during sound sleep to 78%, not good. I think for some, if you sleep well with good oxygen levels, you have a good day and if you have bad oxygen levels, you have a bad day. As soon as I went on a CPAP machine, without oxygen, nearly all my days were good ones with each day feeling better and better. I don't even nap now without the CPAP machine. It is also the first thing I pack when traveling! I did have a hose break one night and could barely get out of bed the next day, having no energy at all.
     I was told I had idiopathic cardiomyopathy with CHF. Dr. Marc Silver says in his book Success With Heart Failure to look for the answer as to why you have CHF, so I kept looking. He said it could be very important to know. The doctors I have seen are amazed, especially the ones that discussed a heart transplant. I know of others who have been helped by a sleep study, some on this message board. My pulmonologist said he is seeing this more and more, and thinks that many CHF patients can be helped some - just information to consider.
     But Tom, yes some of us are better. For me now it is a bit over 5 years since diagnosis and I have been on the CPAP now for 2 years. Good luck finding your answers, and wishing everyone good days! God bless. CMSchm@aol.com


Elizabeth K's July 8 reply to Tom Campbell's July 7, 2004 - Hi Tom, Doing great here. I hang out here because I'm so new and ignorant; I was diagnosed 11/03. I learn something every day I stop by. I may miss y'all tomorrow though, since I'm going kayaking. :-)
     Seriously, everyone is different with different causes for their CHF and different responses to meds and treatment. The more I learn, the more I'm awed by the complexity of the enzymes, neurohormones, etc. It's not suprising it takes work and patience to approximate the balance that nature used to regulate. My water window is only about 4 pounds; too dry and I've got low pressure and the related sickies, too wet and my heart rate gets way too athletic.
     Some studies say cardiac rehab exercise programs not only do good stuff for the CHF but also help the blues that come with one of life's bigger downers. I have great luck with our program here. I don't know yet if it's helping the EF, but it seems to keep me perky, positive and strong enough to have a little fun.
     Wishing you the best of outcomes, they can happen. I will be taking you and all our fellow CHFers to the mountains tomorrow and sending up a prayer. WmOccam@aol.com


Robert, July 8, 2004 - Hello, I have been just been told by my cardiologist that my left ventricle is severely damaged. I am lucky in that no valves seem to be leaking. My blood pressure is still not controlled at 170/100. I am taking 50mg of accupril as Coreg makes me very depressed. Can anyone help me in what this means and what I can do. My stamina is very bad, I can only walk about 10 to 15 yards at a time. Thank you and bless you all, Robert. hawkdog86@aol.com


Valerie R's July 8 reply to Tom Campbell's July 7, 2004 - Hi, I tried to reply to your e-mail but couldn't get through on that address. I just wanted you to know that mostly I feel good. CHF and IDCM are not things you can really "forget about" however - there are too many reminders. These depress some people a great deal, and you need to get beyond that. Write me if you would like support. :-) vgrogers@aol.com


Roger Hugh's July 8 reply to Tom Campbell's July 7, 2004 - Hi Tom, Yes, I feel well 99% of the time. I am age 54 and was diagnosed with CHF in 1997. I have greatly improved as a result of faith, excellent medical care and family encouragement. I remember when walking on a treadmill was most difficult.
     For the last 3 weeks, I have been able to walk 2 miles in less than 30 minutes (5 grade), a goal I have hoped for a long time - to me, this is a big deal. I continue since 1997 to to attend local hospital's rehab program. Three times year they hook us up and monitor us on a treadmill, stairstep and airdyne. Why others stop, I don't know. It is only $45 but there are always new faces. Hang in there - life can get better with the proper combinations.
     As always, thank you Jon for this forum, and from my perspective, ministry. rjhughs@juno.com


Mike C's July 8 reply to Colman Dixon's July 7, 2004 - Hi, There are several ways to get health insurance coverage. Obviously if you qualify, you can get Medicare (due to disability) or Medicaid (disabled and broke [welfare]) or if you're a vet you can use the VA. Also, Blue Cross-Blue Shield and Unicare HMO to name a few, have individual plans. Many states now have state-run high risk insurance plans (pools) but they are expensive.
     One way to get affordable insurance is to sign up for a college course at your local accredited college. If you don't have insurance, they will offer you an affordable plan. To my knowledge, this is a law in most states that any college student regardless of age must be fully insured, even if they are part-time. Check this out at your local college and read the policy carefully to know what is covered. I would personally trust and choose a state university rather than some vocational school.
     What really burns me is that you had paid for health insurance only to learn that the money wasn't being used for that purpose. How did that happen? Was your employer scamming you?
     On your other points about CHF and children, you need to learn what caused your CHF if it can be identified. For example if your CHF is a result of high blood pressure, the treatment must include treatment for high blood pressure. If it is a result of a bad heart valve, then a heart valve repair or replacement may be in order. From what I have read from other posts at various sites, I have to say the majority of doctors discourage CHF patients from becoming pregnant because of the enormous strain the pregnancy puts on the heart and other organs. In fact, some women actually get CHF from being pregnant. On the flip side, if your EF and BNP returned to normal and your symptoms improved, which happens in some cases, then the possibility of a safe pregnancy would exist.
     People with CHF need to get proper regular care and medication. You also need to know what kinds of activities you can do and what kinds of activities will worsen your condition. If you don't, your condition will decline much more rapidly. I hope all works out well. Mike. emike_c@hotmail.com


Cathy, July 8, 2004 - Hi, What kind of heart drug is Cardizem? My dad was just diagnosed with CHF and the only thing his PCP has put him on is Cardizem and Coumadin. He threw a clot to the lung in December. No diet, no Lasix, no advice other than, "Take your inhaler and call me if the cough gets worse." Yikes! My hubby has class 3 heart failure and we are tearing our hair out about now.
     Unfortunately, my dad won't listen to me. He lives in the Outer Banks, North Carolina and thinks this young whipper-snapper hung the moon. He underwent chemo last month for mesothelioma "lung cancer caused by asbestos" and it nearly killed him. He lost about 25 lbs, so he thinks he's doing great because he gained about 12 lbs in the last 3 weeks. Yikes again! He has no pulmonologist, only an oncologist at Duke University, who took him off the Cardizem before chemo and forget to put him back on it.
     Getting this man to even go to the doctor is like trying to herd kittens with a water hose. He had been in good health up till this year so he thinks he can just take his pill and the doctor will make it all better. Aarrrgggghhhhh! The King of Denial lives in North Carolina, if anyone's looking for him. georgecd@worldnet.att.net


Andy Pritchard, July 8, 2004 - Hi, I've been experiencing an occasional numbness in my fingers that seems to be brought on by cold weather and through a friend who has this disorder, have finally discovered what it is and why CHF patients may suddenly have an onset of these symptoms. It's called Raynaud's Phenomenon and beta-blockers can trigger it. I've seen several other posts asking about this. For more info, check out http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm. andy@mrdatacorp.com


Susan L's July 8 reply to Linda B's June 1, 2004 - Hi, I applied for Social Security disability 3 months ago and was told I can expect a response in about 150 days. Are they being unrealistic? I have DCM for about a year now with an EF of about 15 to 20%. I am 50 years old. I was encouraged that Linda B was approved for SSD on the initial application.
     A comment about feeling sick to your stomach, Linda, caught my attention. I have started feeling nauseous nearly constantly the last week or so. I have never noticed any edema in my ankles but I suspect I have it in my abdomen. I am slender everywhere else, but of course that swollen abdomen could be female-related too. Linda, did you find a cause for your stomach issues? How bad is it? Do you vomit or just feel nauseous? I just feel nauseous, especially after exertion.
     I have been going to cardiac rehab for 3 months and will be seeing my cardiologist for a stress echo soon. I haven't seen him in 4 months and would think I can expect to show an improvement in my EF for all this hard work. Regarding EF, how is it that some have very specific numbers, when I am told merely a range? I was told it is not possible to get an exact EF and yet I have had several echos, an angiogram and a TEE. susanlocurto@hotmail.com
 
Jon's note: Echo gives a plus/minus range of 8% on EF, cath should be accurate to within one percent, and MUGA almost as accurate as cath but not quite.


Renee, July 8, 2004 - Hi, My husband (38 years old) was told he had DCM, CHF, and a-fib in January of 2004. He was really doing well. In May they did an electrocardioversion and his heart is now in a normal sinus rhythm. However, a week later he started having problems with water gain. He just spent 4 days in the hospital. They have him on Lasix, zaroxolyn and Aldactone (spironolactone). He hardly maintains his weight even on all this. They say they don't understand what is causing all this retention. His heart numbers are low and shouldn't be causing it they say. His kidneys are good. Now they are talking about his liver. Has anyone experienced anything like this or heard of it? reneew4103@aol.com
 
Jon's note: Can you be specific about his heart numbers - low numbers make us prone to edema. Not-aggressive-enougn meds therapy (besides diuretics) can also be to blame (by not maximizing heart recovery and function), as can not following a low-sodium diet.


Gatha E, July 8, 2004 - Hi everyone, With all you people out there, is there anyone that is on Medicare and Tricare for Life? I would love to hear about your experience with these two for insurance. Thank you, Jon! Gatha E. Jell855859@aol.com


Bill, July 8, 2004 - Hi, I am finding that by taking along a tape recorder to the doctor's, I can go over what the doctor says and get a much clearer picture as I listen to it later at home. snap2_comic@yahoo.com


Dick, July 8, 2004 - Hi, I am being advised by some doctors to go on milrinone (Primacor). My wife and I are not sure about its use or method of application. Some reports say it shortens life. My EF is 20 to 25% and shortness of breath is a real problem. Any thoughts? usntiger@aol.com


Tom S' July 9 reply to Gatha E's July 8, 2004 - Hello, For those of you who don't know, Tricare is the equivalent of military health insurance benefits that extend for specified periods following separation from the service. For those with severe injuries and protracted treatments, Tricare benefits can be extended for several years and basically are the golden parachute of military benefits. Currently my son is undergoing treatment for injuries received in Iraq which require extensive surgery and follow-up surgeries for several years to come. For the time being his Tricare plan will extend for 3 years beyond his separation date, which hasn't been determined yet. He still has to go before a medical board to see if he can return to duty, which is unlikely. If the injuries prove to be lifelong then he will be moved into the VA medical system where I currently am as a result of VietNam war-related medical problems. He will also likely receive a disability check which can range as high as almost $7000 a month depending on disability percentage and need.
     As far as Tricare for life, I don't really know, but from what I have been told by my son that won't happen in his case because they will move him into the VA medical system up separation.
     I am in my mid-50s and have been on Medicare and SSI disability for over 6 years so I suspect I will now be a lifetime beneficiary of the Medicare system. Recently the VA discovered that I had been wrongly assigned during the process of my separation from the Navy Medical Corps back in the 60's and that my problems are indeed service-related and I am entitled to at least 50% benefits and free medical and prescription drugs from the VA. They also have dug up a certain purple medal for me which I never wanted or expected but they claim I deserve it soooooo I'll go with the flow at this point. I hope that helped to partially answer your question. bigheart@muchomail.com


Roger, July 9, 2004 - Hi, I'm one of the ones that feel great most of the time but still like to check in with the board and get reminded. I do pretty well most of the time but do have a little too much liquids sometimes, mainly coffee. I am doing well on the 300mg sodium a day and am still searching for new low-sodium items, kind of like a treasure hunt.
     I had a different experience at a restaurant the other day. A waitress waited on me and when I asked about no or low sodium, she was right there and knew. She said her grandmother has CHF and told me just what I wanted to hear. Most don't have a clue.
     My cardiologist put me on cod liver oil (liquid, not capsules) for the heart and I got some mint-flavored and it tastes real good! After 3 years I'm still reading and trying to learn more. I just praise God for every day He gives me. rkharmony@highstream.net


Mike C's July 9 reply to Gatha E's July 8, 2004 - Hi Gatha, I'm on Medicare and I love it. You will hear the story from many people that don't have a clue about Medicare that doctors don't like it because it doesn't pay much. The truth is that Medicare pays about 50% of most university medical incomes and doctors' offices are filled with Medicare patients. If either would lose Medicare, they would go bankrupt. The law is that if a doctor doesn't accept your Medicare plan he is taken off the Medicare provider list and cannot accept it from anyone. The only doctors that do this are doctors that do only elective surgery like cosmetic surgeons that you pay in advance. So with Medicare I have the perogative of using the best doctors in the country and I mean you can go anywhere. Also, you don't need a referral from a private doc unless the specialist actually wants one for your case. However, it's always best to work with a primary care doc so that everything you do is medically necessary.
     Just to give you an idea, I saw a cardiologist, had and echo had an ECG and a CXR and blood tests. My bill was over $2000 and I had to pay about 20% of what Medicare approved, which came out to less than $100. I end it with saying I have never had any problems at all with Medicare and I love it.
     Tricare is another story. If you use it at a military facility it's fine. You can use some VA facilities but you need to call first to make sure the facility has the type of doctor you need like an ob/gyn or pediatrician. However, when you try to use it in the private sector you will find out that most doctors' offices are unfamiliar with it. I have CHAMVA for my daughter, which is similar to the standard Tricare. I tried to work with my daughter's pediatrician but she said no so I pay upfront and fill the form and send it to CHAMPVA and they reimburse me. If I had a specific problem; like if my daughter needed braces or mental health counseling, then I would get approval first from CHAMVA. The same applies to Tricare. The other good thing is that Tricare will act as your primary provider if you have no other insurance or it will pick up your co-payment if it is your secondary insurance.
     I think the main question you're asking is whether doctors accept Tricare. I would have to say no and that you will have to pay upfront and get reimbursed later. Remember if you combine your Medicare with Tricare you have an outstanding medical payment plan and a drug plan. Mike. emike_c@hotmail.com


Jon's July 9 reply to Mike C's July 9, 2004 - Hi Mike, So readers get another point of view, I'll play devil's advocate. Medicare indeed does not pay much in relation to the actual cost of medical services. That is why over 25% of doctors' offices polled by Business Week last month (if memory serves) have already stopped taking new Medicare patients or are planning to stop within the next 12 months. In some western states, this has thrown the medical service sectors into disarray, leaving many patients without any local doctors who will take them on. That was big news last year. So, although most hospitals and over half of doctors' offices do still take Medicare patients, it is losing favor in private doctors' practices of all kinds at a frightening rate.
     Most private doctors' practices can easily survive without Medicare patients and in the next 5 years, I think we will see fully half stop taking new Medicare patients - unless the federal government makes radical changes. Already, many medical practices in my area have big signs posted at their front desk, warning that they will not accept new Medicare patients for any reason.
     Hospitals are in such desperate financial straits in some areas that I think they will keep taking Medicare patients. I refuse to speculate on practices in California though, since they have unusual systems and legislation in place for almost everything. ;-)
     My information comes from healthcare trends researchers and business publications, as well as from mainstream news providers like Reuters Health and the Associated Press. For Mike only, I hope I haven't messed up your posts. You are filling them out in a word processor that is not text-only so when it is pasted into the form, all the punctuation and some other bits are garbled beyond repair. When I retype them, I try to get it right! Jon.


Mike C's July 9 reply to Susan L's July 8, 2004 - Hi Susan, I was approved for SSD first time around. I had a great private doctor who sent SSA a letter appropriately describing my disabilities in great detail. SSA also sent me to a doc who looked me over for a few minutes and I gave a history of my worst days, not my best days. I also wouldn't do anything like climb some wooden stairs he had in his office without him giving me supplementary oxygen, which he didn't have. After my exam, I called the disability determination unit almost daily to see if they had made a decision in my case. They approved my case, but the official letter of approval and the first (retroactive) check came about a month later. The whole process took about 6 months.
     The nausea you feel in your stomach can be caused by mediation so if you have new medication or an increase in some old medications, this could happen. Jon has written about ACE inhibitors and visceral angioedema for one. Another concern is that your liver has become congested. Usually the findings include nausea and belching. As the liver expands from congestion, it presses against the intestines, stomach and diaphragm. This would also give you a bloated feeling in your abdomen and if there is free fluid retention, it is called ascites. Ascites is a concern because it may indicate cirrhosis of the liver. Cirrhosis is just one of the late complications of CHF.
     The good news is that your nausea is recent and probably not associated with significant or long-term liver disease. Both liver function and free fluid in the abdomen can be easily checked. Have your doctor run a liver panel and get an abdominal x-ray, ultrasound, or CT scan. There are more simple tests the doctor can perform in his office to determine free fluid in the abdomen, like the shifting dullness test and fluid wave test, although most doctors don't know how how to do this. Don't forget that sometimes we have a problem that has nothing to do with our CHF, but isn't true that we assume every little problem is an ominous sign that something bad is happening to us? Mike. emike_c@hotmail.com


Linda B's July 9 reply to Susan L's July 8, 2004 - Hi Susan, You may be lucky and get approved on your first try. My case did go through 2 denials and get sent to a hearing officer but he approved it "on the record," meaning without holding a hearing. I still haven't received any money but it is in the pipline.
     In May I had a 3-lead pacemaker implanted (the Cadillac of pacemakers it's still experimental) and by the end of June my nausea had almost disappeared. The doctor said I had been retaining water in my liver and digestive tract. In human beings this is a nausea trigger. Because I have a LBBB, my QRS interval was very large and the bi-ventricular pacemaker has narrowed it almost to normal, apparently limiting the fluid back-up to my abdominal area. If you are nauseated, please make sure your cardiologist is aware of this as you are almost certainly retaining fluid abdominally and this is something that requires attention.
     If they don't listen to you the first time, keep repeating yourself. I had little or no ankle swelling either and no visible abdominal swelling, but I knew how I felt. Good luck. Susan. lmbanicki@yahoo.com


Renee's July 9 reply to Jon's July 8, 2004 - Hi Jon, They said that his heart number was a 5 and his EF is 15%. He follows the low sodium diet very closely. I make everything from scratch following the low sodium recipes. They have him on Coreg, warfarin, amiodarone and lisinopril as well as the diuretics. reneew4103@aol.com
 
Jon's note: His heart size isn't bad, but with an EF of 15%, it should not surprise a heart failure specialist that he is retaining fluid. Is his doctor a heart failure specialist? Do you know his BNP blood test result?


Betty Lee's July 9 reply to Valerie R's July 5, 2004 - I just thought I would share my amiodarone/visual problems with you. I have been on amiodarone (Cordarone) three different times. I first started in 1999, had an ablation in 2000 and stopped the drug 3 months later. The next time was 2002 when the ablation failed and I received another ablation and an ICD. I discontinued the amiodarone 3 months later. The third time was summer of 2003 when I had a "storm" of ventricular tachycardia and my ICD was firing as many as 10 times per day. I was in the hospital and they started me on 1400mg of amiodarone per day. I finally was able to decrease it to 300mg in 4 months.
     All this is background to tell you that each time, I developed deposits on my cornea and my vision got very bad. As soon as I stopped the amiodarone, my vision began to clear. The last episode took about 9 months before I could see better. I also have cataracts but my opthalmologist did not seem to think there was any relationship.
     Of more concern to me was the development of lung toxicity from the amiodarone. I was hospitalized to change from amiodarone to sotalol and am grateful that it appears to be controlling the arrhythmias. I think that amiodarone is so toxic that it screws up many bodily systems and yet I understand it is the choice drug because of its effectiveness. Good luck. bjlee123@aol.com


Clara D's July 9 reply to Susan L's July 8, 2004 - Hi Susan, You've hit on something that bothers me also - why some people are given the exact reading the technician gets on the echo and others aren't. I continue to be told that my EF is less than 15%. I recently went with my husband when he had an echo and asked the technician doing the test if they always get an exact number, even when the EF is very low. She assured me that they did, but went on to say, as Jon did, that the EF can actually be several points higher or lower than the number they come up with.
     At my last appointment with my cardiologist I brought this up and in effect was told that patients can't be trusted with the exact reading because they won't take into account that the reading is not always accurate and would jump to the conclusion that they are better or worse which wouldn't necessarily be the case. This really bugs me, but I couldn't budge my cardiologist. That's just the approach they take at some, but not all, institutions, and I guess it's not important enough to change cardiologists over. Clara D. jdossett@nc.rr.com
 
Jon's note: Get a copy of your medical records and you'll know the numbers. Any doctor who doesn't think a patient can handle his own test results is gone immediately (fired) if I am the patient.


Carla's July 9 reply to Colman Dixon's July 7, 2004 - Hi there, I'm in the same position as you. I wish I had better news regarding pregnancy. I was just diagnosed with ischemic cardiomyopathy in January of this year. My EF was 25% and in 6 months it hasn't improved. My cardiologist and high risk coc are totally against the idea of pregnancy.
     I understand the "heartbreak" of this realization, as me and my husband had only been married 6 months and neither of us have any children. I'm 36 years old. We just keep hoping for a miracle and I know they do still happen.
     Jon's right - if you can ever get your symptoms under control and improve your heart performance, it might be worth the chance with a good team of doctors. I also frequent a web site for PPCM survivors (peripartum cardiomyopathy) and several of them have gone on to have successful pregnancies. I'll say a prayer for you and please feel free to contact me. I can't offer you much information on the insurance part but I can tell you that with the right combination of meds, you should see improvement. At least, you'll feel better! carla@cnbt.com


Anne, July 10, 2004 - Hi, My husband who passed away 12/18/2003 of cardiac arrest while on a treadmill in our garage, had experienced 4 episodes of left-eye disturbances prior to his death. I am searching for any similar pre-warning experiences of persons with chronic heart disease, particularly those with bradycardia. wsisler@cfl.rr.com


Jim, July 10, 2004 - Hi, Has anyone with cardiomyopathy had their knee or knees replaced? My osteo doc wants me to have both knees done at once and my CHF doc says he sees no problem; but since this is such rigorous surgery and the rehab so long and arduous, I'm wondering if I'll be up to it. Vigorous exercise leaves me fatigued the next day. I'm wondering what vigorous physical therapy will do to me.
     I realize everybody's mileage varies, but I'd like to hear from any CHFers who had their knees done. Thanks. jimoran@aol.com


Clara D's July 10 reply to Jon's July 9, 2004 - Hi Jon, I always get copies of all test results. My first echo was done at UNC and the EF result was stated as 14%. The two done more recently were done at Duke and the results were both stated as less than 15%. That's just the way they do it at Duke. I like my doctor and we communicate pretty well. I think this is something he has no control over, and while I think it's dumb and it certainly bugs me, it's not a big enough deal to make me go through the stress of changing doctors again. I just wanted to vent a little when I saw Susan's post! Thanks for giving us a forum where we can do that. Clara D. jdossett@nc.rr.com
 
Jon's note: No sweat - getting the right doc for you and then keeping him is one of the hardest parts of heart failure in my opinion!


Gail, July 10, 2004 - Help! I'm having trouble with my employer and wondering if there is a solution. I was diagnosed in February of 2004 with idiopathic cardiomyopathy and an EF of 15%. Five months later my EF is 42% (thanks to God, my family, medications, exercise and low sodium diet). So I am back to work as a labor and delivery nurse. It is a small unit and I am the only registered nurse on duty when working. Therefore I have no one to relieve me for breaks, lunch, etc. I usually work 12 hour shifts but have been working 8 hours since returning 11 weeks after diagnosis.
     Now my employer (of 25 years) is saying I need to return to the 12 hour shifts or I don't have a job. I am very concerned about this. I have not done much of anything without a break in 12 hours. Aerobically, I feel better than I have in several years but I get so fatigued, with muscle shakiness, weakness, etc. I still have a doctor's excuse to work 8 hour shifts and don't see him until early August.Thanks for any ideas, Gail. gdped@daktel.com
 
Jon's note: You might look into the Americans With Disabilities Act at http://www.adainfo.org/links.html.


Henry, July 12, 2004 - Hi, What questions should I ask the cardiologist? My father is in his late 70s and is in the ER with CHF. rosenhr@aol.com


Sandy, July 12, 2004 - Hi, My husband is 67, diabetic, and was diagnosed with COPD and CHF in February of 2004. His doctor replaced his pacemaker in February with a pacer/ICD. He has refused to stop smoking, eats whatever he wants, and doesn't take his meds when he's supposed to take them. Also, I just found out that he has been taking viagra.
     My question is: Isn't viagra a bad thing to be taking if you have all these other meds and also, he has high blood pressure? Also, he was undergoing radiation treatment for prostate cancer last January and February, when he was diagnosed with the CHF and COPD.
     I am at my wits end with this man. I am raising 3 grandchildren and he's acting like he's a kid himself. I work full-time, take care of everything at home, while he does nothing. He doesn't even take out the trash. I'm sure that some exercise would be good for him, wouldn't it? Please help me to understand what I'm to do here. This man is driving me nuts! emilyj1996@hotmail.com


Sandy, July 12, 2004 - Hi, I just got a letter telling that my next appointment I will be seeing a physician assistant. I am concerned that I will not be seeing my cardiologist. How do you find out whether a cardiologist is a heart failure specialist? I am doing much better but don't want to get back like I was. Any suggestion would help. shallacy@mo-net.com
 
Jon's note: A cardiologist whose practice is at least 51% heart failure patients qualifies for the term in my opinion but the higher that percentage, the better.


Ron, July 12, 2004 - Hi, I am thinking of visiting my son in Colorado but am concerned because the city he lives in is at an altitude of 9000 feet. Having been recently diagnosed with CHF and an EF of 10 to 15%, I would appreciate any comments or concerns. Thanks. ronr@kw.com


James' July 12 reply to Tom Campbell's July 7, 2004 - Hi Tom, There are a couple of us who have replied to you in the past, on and off-board, with strong suggestions of dietary modifications, fluid reductions, etc. Have you taken our advice and made those changes yet? These truly are key to surviving through heart failure.
     To learn more about many of us, visit the Who's Who section on this site. There you can read about many CHFers' background and even how we feel. Although the vast majority of posts are from those new to CHF or with unanswered questions (usually courtesy of a doctor), many long time CHFers also frequent the board - they just post less for obvious reasons.
     As for how I feel: I'm survivin'. Day by day is the mantra. I still get out and do many of the more active things I used to do - no one believes me when I try to use SOB to get out of cutting the grass. <g> I manage my own business as well. As many have said, this is survivable, with adjustment. jnj@spamcop.net


James' July 12 reply to Colman Dixon's July 7, 2004 - Hi Colman, It sounds like you've entered the "personal hell" stage. Trust me, things will get better over time. CHF is a difficult condition, especially for younger people such as us; I'm 35 now. Believe me, I can commiserate. I was diagnosed a few years ago and have spent the better part of the time since in a solid state of depression (read my bio).
     You say you have many unanswered questions - ask away. I'm good, but even I can't tell what you do or do not know already. ;-) You'll also want to read The Manual on this site to get a solid handle on this health condition. Do you have any information on what caused your CHF, what your ejection fraction (EF) is, and so forth? What medications are you on?
     On the issue of health insurance, I'd look into that a bit more closely and get a better grip on what the story is there, especially since they were already taking money out. It might be time to contact an attorney about that matter because it sounds shaky.
     There are 2 things you can start off with, to really begin bringing this thing under control: low sodium and fluid reduction. If I've said it once, I've said it a million times, that these 2 life style changes alone are a key to feeling healthier and more vibrant. If you do not drop sodium to under 2000mg (2g) and fluid intake to 2 liters or less (64 ounces and that includes soda, tea, juice, and so on) then you simply will not feel better. This means that for now at least, you need to give up eating out and forego canned, boxed and other processed foods in favor of fresh foods. Fast food is largely a thing of the past: a Big Mac, fries and Coke is a full day's sodium intake all by itself. Take time to pre-cook meals on the weekend and toss them in the freezer for microwaving so you can still get that quick meal from time to time. I've excerpted below my general low-sodium response to those who are new with CHF.
     As for how long it will take to get back to doing the things you were used to doing. That varies and depends. Being able to walk for 20 to 30 minutes is not bad. Many without heart failure have trouble doing that. Can you have kids? As long as you are male, yes. Pregnancy is tough on the heart so women with CHF are generally counseled against pregnancy. You should wait until you have a better handle on your health first, of course. I have 2 little 'uns myself. They keep me busy as all get out. <g>
     You mentioned depression. That's normal at first with this condition. It's a terrible blow, especially to someone in their 30s. If you're on a beta-blocker, that can contribute to depression. To get over the hump, you may want to discuss a mild anti-depressant with your doctor. Hang in there. jnj@spamcop.net


Susan L's July 12 reply to Anne's July 10, 2004 - Hi Anne, I am so sorry for your loss. By left eye disturbances, do you mean he saw flashes, jagged lines that interfered with his vision? I have had those and mentioned them to my cardiologist but he did not have an answer. They seem to have subsided now. Are you certain they were related to his cardiac arrest? In our efforts to understand what has happened we tend to put a connection to many things that possibly are unrelated or perhaps a reaction to medication.
     I wish I could write something that would ease your pain but at least we have this wonderful venue to help us learn and communicate with one another (thank you to Jon). I so appreciate everyone's input. susanlocurto@hotmail.com


Sherri, July 12, 2004 - Hi, I've been reading a number of posts about amiodarone (Cordarone). My dad had some episodes of fluid retention after starting the drug and one of the doctors suggested that it could be due to the lung toxicity issue of the drug. Another doctor disagreed. They did something called a pulmonary test, I think. What does amiodarone lung toxicity mean? Is it reversible? email_src@yahoo.ca


Lisa Hammond, July 12, 2004 - Hi, I would like to know if I am considered to have CHF. I have an ejection fraction of 45% and a lot of PVCs, around 300 an hour. My doctors say not to worry but I continue to have all the symptoms listed here as if I had CHF. I have chest pain, fatigue, etc.
     I am getting ready to have a thallium stress test and have had testing before about a year ago. A stress test 5 years ago showed left bundle branch block but since then the PVCs have come about. Any comments from anyone would help. lahammond6@yahoo.com


Cathy, July 12, 2004 - Hi all, Well, we had a bit of a scary day. You may remember my hubby had a full-blown CHF episode last February. He is on 14 medications and he adheres pretty strictly to his no-salt, low sodium diet (500mg per day).
     We took the kids to the beach last Friday. I packed all the right stuff so he could eat right, but he insisted on eating a sandwich, some cookies, and a few Lay's BBQ chips; not overdoing it but definitely not his normal diet. He gained 7 lbs overnight. It is not unusual for him to fluctuate 2 to 3 lbs but he woke up puffy all over. So he doubled his Lasix. The fluid came off a little but he remained puffy, fatigued, and shaky. He did about the same yesterday.
     Then today he went from 163 to 167 lbs in about 2 hours. His normal weight is 159 to 160. He was all palpitated, anxious, puffy and shaky. Still, he would not call the doctor. So I called the doctor, who immediately sent us to an ER.
     He's okay now. He did not have a major heart event. I feel strongly it was going off the diet that triggered it. At any rate, it made a true believer out of my hubby. georgecd@worldnet.att.net


Kim, July 12, 2004 - Hi, I have a question. I just saw my CHF doc and have been having a terible time with fluids. Most of the fluid that I am retaining is in my abdomen. This is where it was when I was diagnosed last October, also my liver and biplural effusion but not in my legs and a little in my hands. To make a long story short, I cannot get rid of the fluid and he says that he knows of no way to effectively get rid of it. I am suppossed to talk to my PCP about going back on Reglan. My EF is 35% and it is okay now.
     I have also been having a lot of PVCs and he said that I should get used to them because they will not go away. I have a pacemaker and low blood pressure. The PVCs and lightheadness have made me curtail my driving because it happens when I am driving. I don't want to cause an accident.
     I am 38 and feel like I should be feeling better than I am. I do have okay days but this fluid, about 10 lbs of it, and everything else are very uncomfortable. Has anybody been here or have any suggestions? Thanks, Kim. kwilczewski@aol.com


James' July 13 reply to Lisa Hammond's July 12, 2004 - Hi Lisa, We are not doctors here and I don't think you'll hear anyone give you an actual diagnosis. If your EF is less than normal, you may suffer the symptoms common to CHF, so there is certainly a possibility you have heart failure. The diagnosis should come from your cardiologist, If they won't be straight with you, find new doctors.
     It is imperative in this day and age to stay on top of your own health concerns. In other words, don't leave it up to the doctors. Be an engaged and informed patient, learn about any conditions that afflict you and make sure your care providers do what needs to be done. If they do not wish to share data or diagnosis information, get a copy of your medical records with all test info included and change doctors. There are docs out there who will work with you in your long-term care requirements.
     If you are suffering the symptoms common to CHF then you may find some of the things we do to counter those symptoms will help you. The simple fact of the matter is that what many of us do is healthful for anyone, let alone those who suffer health problems.
     Give it a spin: Reduce your sodium intake to below 2000mg daily, stay away from canned or other packaged food awhile in favor of only fresh foods, don't eat out, toss out the salt shaker, and drink no more than 64 ounces of fluids each day including soda, juice, coffee. While you're at it, reduce the amount of fat you consume as well. I'll wager you start to feel generally better within a week. jnj@spamcop.net


Jon's July 13 reply to Lisa Hammond's July 12, 2004 - Hi Lisa, It's easy to forget that heart failure is not an illness; it's a set of symptoms that occur when your heart is too weak to meet your body's full need for blood and oxygen.
     What this means is that if you have weakened heart function and you also have heart failure symptoms, you have CHF. When you start investigating the underlying cause or causes of your CHF, it gets more complicated and you need to communicate with your doctor, whether he likes it or not <g> to nail that down. Like James says above, Read The Manual!. It's one-stop shopping for CHF education. Jon.


James, July 13, 2004 - Hi, I have an friend who is 60ish, has had 2 minor heart attacks due to ischemia about a year apart, his EF is 30% but has not been diagnosed with CHF. Go figure. The docs have him on atenolol, Diovan, Tricor, and Lipitor; yeah, I'm not terribly pleased with the last two either. Since this second heart attack, he has problems with the heat. After a couple of hours out in upper-80 degree weather or hotter he has to head inside. He gets sick, weak, and so forth. His thyroid tests came back normal. Does anyone have a thought? jnj@spamcop.net


Jon's July 13 reply to James' July 13, 2004 - Hi James, I can only speak from my own experience on this. Ever since getting CHF and a reduced EF, I have had less tolerance for heat. I sweat about the same but don't stop sweating as quickly too. I assume this is partly from the neurohormone irregularities, partly from fluid imbalance (volume), and partly from the reduced blood flow to every area of the body per minute. We just don't get regulated as effectively as people with normal heart function, I guess. I'd love to hear other ideas as well. Jon.


Cathleen, July 13, 2004 - Hi there, My mom Cecelia was just diagnosed one week ago today with CHF. She is 55 and lives in central Minnesota. She is terrified that this will be her last week on earth. I have spent nearly each day with her, but had to work today and talked to her on the phone several times, each time with her in tears. We go tomorrow for an echocardiogram and we go to see her PCP on Wednesday. She simply went into Urgent Care because she was depressed, tired, and was constantly out of breath even with walking only 20 feet. Once there, they did blood work which led to a urine test, which led to a CT scan, then chest x-rays, and an EKG. Her heart was enlarged and she had lots of fluid in her lungs, and was diagnosed with CHF.
     She was put on Lasix and Altace. Today, one week later, she says that she feels a ton better than she has in months. I'm hoping that her condition can be controlled with limiting her fluid and taking her ACE inhibitor. Is this even possible? I feel like I'm a CHF expert after this past week.
     She is so scared though. If anyone could e-mail her with encouraging words, please do so! She doesn't want to come on here because she "doesn't want to know" about all this yet. We're kind of going the route where I learn about it and pass it along to her, which is fine with me but she needs to hear from people who have survived with this for a lengthy time.
     Please write to her at cdpms@hotmail.com. I really appreciate it! Cathy. cmschmainda@astound.net


Greta's July 13 reply to Lisa Hammond's July 12, 2004 - Hello Lisa, Like Jon says, "I'm not a doctor" but if I were you, I would get real aggressive with your doctors about all the symptoms you are having. If they don't give satisfactory answers, find another doctor. I am assuming when you say "my doctors" you have more than one?
     Since a normal EF is 55 to 60% and yours is 45%, there is something going on. Have any of the doctors done a BNP on you? That is a blood test that will tell them for sure if you have CHF or not. This test measures the levels of a natural hormone in the blood called B-type Natriuretic Peptide. The higher your levels the worse your CHF.
     Like Jon, I don't believe you need to stop with this test; there are others that should follow. Consult Jon's site for his suggestions. Then, talk, seriously, with your doctor(s). Keep us posted on the results. Blessings, Greta. gjohnson@arkansas.net


Greta's July 13 reply to Ron's July 12, 2004 - Hello Ron, About that visit to Colorado, I can speak from experience. Although I live in Arkansas, my hubby and I have done some vacationing out west in Colorado and other states with high altitudes. Anything above 5000 to 8000 feet above sea level will give you problems. The higher you go, the worse the problems are, especially with an EF that low. My EF is 35% as of about six months ago and I still experienced some SOB at 7000 feet. Besides the SOB, extended stays at that height causes edema that is hard to get rid of.
     You don't say what state you live in, but you and your son might consider meeting halfway at a safe altitude for you. Can he feasibly come to see you instead? My advice is don't go. You might be putting your health at risk. Keep us on the site updated on what happens. Blessings, Greta. gjohnson@arkansas.net


Susan B's July 13 reply to Ron's July 12, 2004 - Hello Ron, My husband George, has DCM and I have spent the last 2 months working on traveling with him to Colorado for a wedding at 14,000 feet. His EF has improved over the last 3 years of treatment from 15 to 20% up to 55 to 60% according to the echo. This is where we are in the process.
     First, we have been talking to his CHF doc about traveling to South America. He told us that we would need to take breaks in the trip. I am waiting on a call to him for the Colorado trip. The PCP has given the trip his okay, with the condition that we check it out with the CHF doc. We are taking the train so that we are not changing from 4000 feet to 14,000 feet in a few hours. We are also not sleeping at 14,000, but at 7000 feet. We are going to watch his water intake. Hopefully, we get a balance. Good luck. Susan. gbratcher@kc.rr.com


Jeff Anderson, July 13, 2004 - Hi, Has anyone ever heard of a CHF symptom or connection of a runny nose that only occurs when eating? I have this symptom and a co-worker said that his grandmother complained of the same thing and she had CHF. Any input? Jeff A. uagain51@hotmail.com


James' July 14 reply to Jeff Anderson's July 13, 2004 - Hi Jeff, I think this is usually related to food, not the CHF. I've had it for years longer than my heart problems. In different people there may be different triggers but my biggie has always been with anything dairy or anything high in grease. The common item is fat. jnj@spamcop.net


Lori K's July 14 reply to Lisa Hammond's July 12, 2004 - Hi Lisa, I had a LBBB and PVCs for 15 years before I was finally diagnosed with CM. I had an EF of 50 to 55% for all that time and normal echos. My docs were puzzled but nothing was ever done beyond this.
     Two years after having my son, my echo showed a drop to 38 to 40% EF. The docs panicked and put me on an ACE inhibitor (Altace), then a few months later a beta-blocker. My EF returned to 55%, but I now follow a very low sodium diet and I am more symptomatic. If you can see a CHF doc for an opinion, that would be the way to go.
     My CHF doc now says I probably had CM for all those years. I may have prevented getting CHF if I had been treated earlier. So go find a great CHF doc and see what he says. Good luck and feel free to write me. Lori K. thegoof86d@aol.com
 
Jon's note: Just a general note - EF cannot be accurately measured if you have lots of PVCs during the test used to measure it.


Ruthie A's July 14 reply to Jeff Anderson's July 13, 2004 - Hi Jeff, That runny nose business is a pain, isn't it? Everyone in my mother's family has that problem but not all of us have CHF. In fact, only my mother and I do but there must be a couple of dozen of us that have to excuse ourselves during a meal and blow our noses.
     Since I'm not a doctor, I cannot tell you why this happens. I have my own theories, but my mother claims they are nonsense! <lol> I wouldn't listen to everything people say, nor would I attribute every little thing that goes awry in our bodies to heart failure. I rather think the runny nose and CHF is just a coincidence. What do others think? Ruthie. rlaba51@yahoo.com


Dorothy's July 14 reply to Jeff Anderson's July 13, 2004 - Hi Jeff, I don't know that I have ever considered my runny nose (only when I eat) as a CHF symptom. I took allergy shots for years for allergies to corn, trees, etc. My internist insisted that I discontinue the shots and not mix them with heart meds because I could have a reaction to the shots and could not be rescued if I were to go into shock.
     I just assumed that corn starch and other corn-containing ingredients were causing my runny nose. I have found a nasal spray that has stopped my runny nose called SinuFree, a homeopathic over-the-counter nasal spray. The label is navy blue with yellow printing and an outline of a nose in red ink. I have found it at both WalGreen and Eckerd Drug stores. It costs about $13 but is the best I have found. I use 2 sprays in each nostril and inhale, while holding the other nostril closed with my finger. I had many sinus infections in the past and have not had one since I started using this. I hope this helps and that you find relief! DPowell806@aol.com


Dorothy's July 14 reply to James' July 13, 2004 - Hi, I was diagnosed with CHF in April of 2001 and have experienced difficulties with both heat and cold! I got too hot in August of 2001 and had tachycardia (my heart rate was about 175) which was only resolved with a trip to the ER. I had the same experience in November of 2001 because I breathed cold air. I now have a muffler across my nose any time I go out into the cold of 45 degrees or lower.
     Both times when I went to the ER, the docs used an IV to administer meds which temporarily paralyzed my sinus node and then my heart rate returned to normal. I am one of those who thank God every day that my body has responded so positively to a regimen of heart meds, very low sodium diet and exercise. In 2001, my ejection fraction was 24% and I had severe cardiomyopathy caused by a viral infection. My cardiologist recommended heart transplant because of my age (54) and severe damage to my heart. I assured him he could put that option at the very bottom of his list!
     By April of 2003, my ejection fraction was 54% and my heart was not as enlarged as it had been. I was fortunate to find Jon's site shortly after my CHF diagnosis and am eternally grateful for the incredibly useful (read: easy to understand) information. Blessings, Dorothy. DPowell806@aol.com


Sharon's July 14 reply to Anne's July 10, 2004 - Hi Ann, My condolences on the loss of your husband. I was interested in the left-eye disturbances you mentioned. I have had a few where my field of vision has had wiggly lines on it for 30 seconds, most notably on the day I had my angiogram. I had several after that, but my PCP didn't know what it was, and I forgot to mention it to my cardiologist when I saw him. Can you describe? lyons@sasktel.net


Myrtle C, July 14, 2004 - Hi, I am having problems with meds. Norvasc (amlodipine) and Coreg even at a low dose have caused me to revert into depression. I had a problem with ACE inhibitors due to coughing at night and gut problems. I have been on other beta-blockers: Tenorman, Lopressor, Corgard; and other ACE inhibitors: Zestril (had colon pain), Capoten (had diarrhea). I develop purpura when using a thyazide diuretic so am limited to Lasix and am on 30mg now.
     Does anyone have any suggestions about what else I could try. I see my cardiologist at the end of this month. I cannot even cook a meal or vacuum because I get angina and SOB plus fatigue that causes me to sleep for 2 hour "naps." I try to avoid those naps - brain fog develops and I am out on the bed, not even hearing the alarm when I set it for 30 to 40 minutes.
     My doc says I am class 2 but I feel as if I am class 4. My mother had less problems with her CHF a month before she passed on. However, she had a different reason for her CHF and I presume that makes a difference also. omieof3@yahoo.com


Yvette's July 15 reply to James' July 14, 2004 - Hi, I have had CHF for the last almost 8 years now and cannot stand the heat for long periods. If I need to do something that will require me to be outside for long periods, I usually will try to accomplish them in the early morning or after the sun has gone down. If for some reason I am outside during the hottest part of day for a long time it can take me 30 minutes to a day to recover.
     If your friend is watching his fluid intake, and he should, he may want to try keeping ice with him but be careful because you can get too much. Or try taking a wet towel and place it in the freezer and when your friend goes out it can be used to help cool him if he is going to be out for a short time. I like to place the cold towel on top of my head. finch32219@yahoo.com


Cary Deen, July 15, 2004 - Hi everyone, Just an update: I have been seeing a CHF specialist that is on Jon's list, and couldn't be happier with his expertise and knowledge of CHF. Dr. Schneider, in the Fort Lauderdale area, is to be commended for his dedication and hard work. Thank you Jon, for directing me to this great doctor! Y'all take care. cdeen10@bellsouth.net


Jeff Anderson, July 15, 2004 - Hi, Thanks for the responses to my runny nose inquiry. I tend to agree with all your responses but my curiosity was piqued by my co-worker's input. I do have the runny nose occur at times I find difficult to explain, ie., my snacks of fresh fruit. The duration of this symptom in me is very close to my CHF period. I do have environmental allergies but they have required no inhalers or nose sprays since I have been on CHF medication. As my CHF nurse says, "You were using your inhalers for your CHF."
     As I replied to one respondent, this is a wonderful place for anecdotal information, possibly very common amongst us all, but dismissed by the medical community. I believe that things like cataracts and periodontal disease are possibly more prevalent in heart disease patients than in the general population. Those precursors may not have changed the course to discovering my CHF but on the other hand, they possibly could have saved some of the very frustrating 6 years of experiencing allergies treatments, asthma, infections, steroids, etc,..., and led me to an earlier correct diagnosis.
     As many of you have or are experiencing, I often doubted my own sanity as I continued to try and get anyone to listen to my medical complaints. Again, thanks for your input and to Jon for making this space available. Pura vida (pure life). Jeff A. uagain51@hotmail.com


Scott Brown's July 15 reply to Jeff Anderson's July 13, 2004 - Hi Jeff, I have always had a lot of mucus since I was a child. I recognized early on that my nose was plugged a lot more than other people. When I eat foods with salt, I get a runny nose. I always assumed it was because my body was absorbing more of the fluid due to the sodium intake. The mucus membrane seems to become "wet."
     This is certainly not scientific, just my own findings. I cough up a fair amount of mucus as well, usually while (or just after) I eat. This is especially noticable when I go from being dry (slightly dehydrated) to wet (over hydrated). Scott.Brown@clarica.com


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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