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

Will 12-1     seek stem cell trial centers
 
George's 12-1 reply to Jan's 11-30     you should see your doctor
 
Jack D's 12-1 reply to James' 11-29     cold remedies
 
Denny 12-1     supplement questions for Jon
 
Jon's 12-1 reply to Denny's 12-1     supplements
 
Mark K 12-1     thanks to all and more
 
Lisa 12-1     does anyone have leg weakness?
 
Evelyn 12-1     should I switch docs now?
 
Lowell Pepper 12-1     should I stay on Coumadin?
 
Jason 12-1     seek input on my condition
 
Cathy's 12-1 reply to James' 11-29     saline solution flushes might help
 
Fabian 12-1     seek input on transplant with cancer
 
James' 12-2 reply to Ann L's 11-30     over the counter cold remedies
 
Jason 12-2     different e-mail address
 
Larry Thornton's 12-2 reply to Lisa's 12-1     amiodarone experience with leg weakness
 
Noel Brener 12-2     seek New York City CHF doc
 
Stephanie's 12-2 reply to James' 11-29     why not these remedies?
 
Marty 12-2     the program has worked for me!
 
Lowell Pepper 12-2     Coumadin & BNP questions
 
Tom S' 12-2 reply to Lowell Pepper's 12-1     Coumadin experience
 
Barb N's 12-2 reply to Cathy's 12-1     saline nasal solutions
 
Pam S' 12-2 reply to Cathy's 12-1     saline nasal solutions
 
John's 12-2 reply to Lisa's 12-1     amiodarone experience & muscle weakness
 
Tom S 12-3     making "normal" saline solution
 
James' 12-3 reply to Stephanie's 12-2     over the counter cold remedies
 
Joe's 12-3 reply to Stephanie's 12-2     guafenesin substitute
 
Oliver's 12-3 reply to Noel Brener's 12-2     New York City heart docs
 
Carla 12-3     some good news!
 
Bill 12-3     update, diuretics
 
Jon 12-4     disability review results
 
Gene 12-4     seek link between blood lipids & SOB
 
Robert 12-5     seek remedies for constipation
 
Sandy's 12-5 reply to Carla's 12-3     congratulations
 
Jack D's 12-5 reply to Gene's 12-4     hmmmm
 
Norma 12-5     seek high cholesterol treatment ideas
 
Ron 12-5     how do I appeal insurance denial?
 
Noel Brener's 12-5 reply to Oliver's 12-2     thanks for the info
 
Gene 12-5     addition to my last post
 
Mike 12-5     seek info on disability review process
 
Peter 12-7     seek studies on SCD
 
Vicki's 12-7 reply to Robert's 12-5     chronic constipation experience
 
Jason M 12-7     seek heartburn, gas remedies, ideas
 
Chuck's 12-7 reply to Robert's 12-5     chronic constipation experience
 
Art 12-7     pacer helped me - don't give up
 
Norma's 12-7 reply to Robert's 12-5     chronic constipation remedies
 
Heather 12-7     need some ideas for my mom
 
Stan 12-7     how do I lose some of this weight?
 
Patrice 12-8     seek ideas on transplant listing & more
 
Will 12-8     do I need a meds change?
 
Alexandra 12-8     am I in denial?
 
Sandy's 12-8 reply to Stan's 12-7     diet and losing weight
 
Joy's 12-8 reply to Heather's 12-7     information is great! leg pain question
 
Roger's 12-8 reply to Evelyn's 12-1     switching doctors
 
Geneva 12-8     valve regurgitation questions
 
Gatha E 12-8     extra oxygen question
 
Jon's 12-8 reply to Gatha E's 12-8     extra oxygen for heart failure
 
Patrick 12-9     can I take 2 beta-blockers? real money trouble
 
Jacy's 12-9 reply to Alexandra's 12-8     stable is good!
 
Linda O's 12-9 reply to Joy's 12-8     my leg ache experience
 
Frank 12-9     seek Tampa, Florida heart failure doctor
 
Jason M 12-9     good news update
 
Jack D's 12-10 reply to Linda O's 12-9     statins and muscle loss
 
Alexandra's 12-10 reply to Jon's 12-8     and to Jacy
 
Dan Hoffman 12-10     seek CHF doctor in St. Louis, Missouri
 
Scott Brown's 12-10 reply to Patrick's 12-9     generic Coreg in Canada
 
Scott Brown's 12-10 reply to Gatha E's 12-8     oxygen use for heart failure
 
Carla 12-10     really need some ideas for my mom
 
Lori K's 12-10 reply to Alexandra's 12-8     facing your heart
 
Susan 12-10     seek Coumadin (warfarin) experiences
 
Mike's 12-11 reply to Susan's 12-10     Coumadin (warfarin) experience
 
Norma Lybarger's 12-11 reply to Dan Hoffman's 12-10     difficulty finding CHF specialist
 
Giorg 12-11     really need PVC & bigeminy treatment ideas
 
Bill's 12-11 reply to Susan's 12-10     Coumadin (warfarin) experience
 
Patrick's 12-11 reply to Scott Brown's 12-10     thanks, meds costs
 
Nancy 12-11     will symptoms ever really go away?
 
Alexandra's 12-11 reply to Lori K's 12-10     upcoming hearing, venting
 
Rhonda 12-11     thanks for the web site
 
Will 12-13     seek doctor in Louisiana
 
Sandy 12-13     had a pacemaker implanted
 
Linda's 12-13 reply to Patrick's 12-11     meds assistance
 
Scott Brown's 12-15 reply to Nancy's 12-11     shortness of breath
 
Linda C 12-15     seek info about end-stage heart failure
 
Sharon 12-15     do you take folic acid?
 
Debra 12-15     seek CHF doc near Ocala, Florida
 
Tunny's 12-15 reply to Will's 12-13     please e-mail me
 
Sherri 12-15     seek experiences with cough
 


Will, December 1, 2004 - Hi, I have not seen any comments about the stem cell therapy in this country. We have some involved doctors in the Houston area and in the Salt Lake City area also. The web site for the Houston area doctos is www.texasheartinstitute.org. This site will inform you of all the work that they have been doing. If you live in the Houston area I would contact them as soon as possible to see if you could be in their future clinics. Salt Lake stem cell work is at the Veterans' hospital in Salt Lake City. Does anyone know of any other areas that are involved in this type of research? stelco@eatel.net


George's December 1 reply to Jan's November 30, 2004 - Hi Jan, Any cardiac-related issue that wakes you from a sound sleep definitely requires a medical consultation as soon as possible, in my opinion at least. Better safe than sorry, eh? Besides, with the holidays almost upon us, your doc could probably use the money, so give him a call! <lol> Good luck to you. gdoyle56@optonline.net


Jack D's December 1 reply to James' November 29, 2004 - Hi James, Try habanero peppers. Cook a little in with your food and it relieves muscle aches and pains. Make a little cinnamon, ginger and habanero tea. It clears your sinuses, relieves headache, and calms your stomach. Zinc spray is also nice at the first sign of a head cold. maddjak@eskimo.com


Denny, December 1, 2004 - Hi Jon, I have a question about your L-carnitine and taurine dosages which might be of interest to the board members. Do you take the Acetyl-L or the plain L type? What is your daily dosage and why that dosage? Also, what is your daily dosage of taurine and why that dosage? Thanks for this great site. Thank God I found it in 1998 right after I got my computer. I rarely post but I read all the posts. You have saved more lives with your information then any heart doctor could ever hope to save. God bless you, my friend. DMoen31209@Yahoo.Com


Jon's December 1 reply to Denny's December 1, 2004 - Hi Denny, My doses are listed in my bio. The dose depends partly on which brand and product I am currently buying. ;-) I buy my taurine in powder form and mix it with water to take it. However, since it comes combined with creatine monohydrate and L-glutamine, if I change the dose of one, I change the dose of all three. Taurine should generally be taken at a dose of 2 to 4 grams daily according to trials in CHFers.
     I am currently taking L-carnitine although I have taken various forms in the past. I take prescription Carnitor so I take less because it is more potent. When I took over the counter L-carnitine, I took anywhere from 250mg twice a day to 500mg twice a day - I simply could not at that time afford to buy any more than that.
     I take an assortment of amino acids that are pre-mixed in one of my 3 supplement powder mixtures. These include L-Alanine, L-Arginine, L-Aspartic Acid, L-Cysteine, L-Glutamine, L-Glycine, L-Histidine, L-Isoleucine, L-Leucine, L-Lysine, L-Methionine, L-Phenylalanine, L-Proline, L-Serine, L-Threonine, L-Tryptophan, L-Tyrosine, and L-Valine. The doses on these range from 250mg to 8 grams each. The same supplements also contain various vitamins and minerals.
     I buy my supplements in formulations designed for weight lifters simply because they tend to contain the nutrients I want for my heart as well as extra protein. I also think they are in general higher-quality products because bodybuilders are a particular crowd - they will quit buying a product if it doesn't give noticeable results. <g>
     All this will be covered to some extent in a section of the upcoming exercise pages, which I am hammering out at an amazing pace so far. Jon.


Mark K, December 1, 2004 - Hello everyone, I wanted to take a moment and thank Jon and all the members here at chfpatients.com. For the last 4 years, my father has fought a long battle with CHF. I've used this site so often for information, guidance and support. This is such a wonderful support tool for patients and their family. My father had good days and bad, but even at his very last moment of life, he held onto hope. Hope is the most powerful medication for anyone suffering from heart failure.
     Yesterday afternoon, his hope couldn't overcome the weakness in his heart, and he left me. For all those who struggle with this disease, please remember how powerful hope is. Thank you for all your support.
     Does anyone know of a good charity that is focused on CHF? I was thinking of the American Heart Association, but was wondering if there was something else. mrjckray@ameritech.net
 
Jon's note: My sincere condolences on your loss, Mark. For what it's worth, CHFpatients.com, Inc., is a 501(3)c - an official non-profit corporation (charity). See www.chfpatients.com/about.htm.


Lisa, December 1, 2004 - Hi all, Does anyone on this board suffer from leg weakness? My dad says that sometimes he just doesn't feel like his legs work. He is diabetic and has heart failure, DCM, and takes a myriad of meds. He has an ICD. One of the drugs he takes is amiodarone (Cordarone) and I am wondering if that could be the culprit. They say it can have an effect on your thyroid and I think leg weakness is a symptom of thyroid malfunction.
     I am just curious about others' experiences. We are debating whether we should seek a different diabetes specialist or go some other route. Any input would be appreciated. Thanks all. lzeigler@marsbank.com
 
Jon's note: I hope others reply. Does he take a statin cholesterol-lowering drug?


Evelyn, December 1, 2004 - Hi everybody, Opinions requested! I'm thinking about looking up a new CHF doc. Now my dilemma is, should I change docs when I'm in the process of waiting for my hearing on my SSD? It was filed by my lawyer about one year ago. I've neve been very comfortable with my current doc. Whenever I call with a problem they usually say if your weight is fine it's got nothing to do with your condition, which really is upsetting to me.
     I'm 18 months in since my diagnosis of DCM and on September of 2003, I started showing signs of heart failure. My EF went from 20% to 40% on meds, and that's only been checked once since the original diagnosis. Sometimes I feel like my heart is fluttering or pounding. It does different things at different times.
     So anyhow, what do you think? Should I find a new CHF specialist or stick with what I have? Evelyn. eveysue@hotmail.com


Lowell Pepper, December 1, 2004 - Hello everyone, I have been taking Coumadin for 6 months since bypass surgery. I was put on Coumadin (warfarin) after the surgery and told I should discontinue it in 2 months. This was the instruction by the doctor in the city where I had the surgery.
     When I came home the cardiologist here said I should continue Coumadin for 6 months because he saw a blood clot in my left ventricle. A recent echo looks as if the clot is gone but the doctor wants me to continue Coumadin. He says I am prone to clots because of a low EF. I then went to a CHF specialist at the Mayo Clinic, who told me to quit Coumadin. I did see in Dr. Silver's Success With Heart Failure that people with EF less than 20% should stay on Coumadin because of an increased chance of clotting. What do you think? Thanks, Lowell Pepper. Lpepper3m@aol.com


Jason, December 1, 2004 - Hi all, I am 30 years old and I have cardiomyopathy. I was getting lightheaded and dizzy, so I went to the doctor. My heart is enlarged. I have been taking medication for 2 months, and it seems to be getting better. My blood pressure doesn't drop when I stand up anymore. Does anyone have any input on my condition? Jasonm@1under.com


Cathy's December 1 reply to James' November 29, 2004 - Hi James, My hubby has had sinus problems for years. He developed sarcoidosis last summer which has led to class 3 heart failure. Every time he has been hospitalized in the last year, it started with a sinus infection, so we were desperate to find something that worked. Antibiotics just could not keep up.
     We discovered a remedy accidentally when our son was treated for continuous sinus infections by his pediatric ear-nose-throat doctor (ENT) last spring - saline flushes. The over the counter saline sprays are not forceful enough to clean the sinuses nor do they spray enough solution. We got our kits through the ENT doc for $15, but I bet you could go online and find one.
     It is simply an 8-oz squirt bottle and some packets of salt and sodium bicarbonate. You fill the bottle with warm sterile water and add a packet of saline solution. Lean over the sink and squirt it up your nose. The excess solution runs out your mouth. It doesn't hurt, although it feels weird. My hubby's cardiologist approved it. Apparently he doesn't swallow enough solution to cause a problem.
     We managed to do this nightly with our autistic 9 year old son - believe me, not an easy thing! - and he has not suffered a single sinus infection in 6 months. My husband is currently battling the one and only sinus infection he has had since last spring. Between the flushes and the antibiotics, he is getting it cleaned out and has not missed any work. So I would have to recommend saline flushes. They have made a remarkable difference in our household. georgecd@worldnet.att.net


Fabian, December 1, 2004 - Hi, The transplant team deciding my fitness for transplant is concerned because of my prostate cancer. My oncology team have assured me that without any intervention at all for my prostate, I would live 18 more years. That would take me to age 80. My caregiver and I can find no studies, research or scholarly articles which bear in any meaningful way on the impact of transplant on prostate cancer. There are clear indications that post-transplant patients are more prone to certain types of cancer but prostate isn't one of them and it seems silly to deny the chance at transplant to someone because they might incur some form of cancer. Anybody?
     I am okay with not receiving a transplant. For me, cashing in is far better than a desperate struggle to live with a heart pump and the impact of radiation therapy. Anyway, it would be nice to hear from you. Other than a final stage heart, I feel great! fabian.acosta@metrokc.gov


James' December 2 reply to Ann L's November 30, 2004 - Hi Ann, The most common decongestants on the over-the-counter market contain pseudoephedrine (Sudafed, Actifed, Robitussin, Dimetapp, Nyquil - take your pick). Pseudoephedrine is a mild vasoconstrictor. That can increase blood pressure and is kind of the opposite of what we take some of our meds for in the first place. :-) jnj@spamcop.net


Jason, December 2, 2004 - Hello again, I left the same message earlier, but my e-mail is not working, so please reply to this e-mail address. Hi all, I am 30 years old and I have cardiomyopathy. I was getting lightheaded and dizzy, so I went to the doctor. My heart is enlarged. I have been taking medication (Lanoxin, enalapril, and Toprol-XL) for 2 months and it seems to be getting better. My blood pressure doesn't drop when I stand up anymore. Does anyone have any input on my condition? Has anyone else gone through this, and what can I expect the next few months? Joot8@yahoo.com


Larry Thornton's December 2 reply to Lisa's December 1, 2004 - Hi Lisa, When I was first diaganosed with CHF five years ago I was put on amiodarone and I could not tolerate it. Like your father, my legs just would not function so my doctor stopped it. In May of this year I went into a-fib, was hospitalized, and the doctors put my heart back in-sync using my ICD, then put me back on Pacerone. I could not tolerate that. I was stumbling all over and in general just felt terrible with flu-like symptoms.
     We first tried lowering the dose but finally had to just quit. Everyone reacts differently to meds. Fortunately, I have a great doctor who listens to me about things and has kept me feeling pretty good for five years even though my EF is only 18%. Like all heart failure patients I have bad days but we have to take this in stride, rest, and go on. God bless you and yours, Larry. carolthornton@comcast.net


Noel Brener, December 2, 2004 - Hello all, I would appreciate a name and contact info for any heart failure specialists or facilities in the New York City area that you can recommend as top-notch, and that you have personal experience with. Thanks. nbrener@verizon.net


Stephanie's December 2 reply to James' November 29, 2004 - Hi James, At the risk of sounding really stupid, (and bear in mind that I am newly diagnosed with IDCM and fairly new to this site), why should I not be taking NyQuil and guafinesin? I am trying to get over a two week old sinus infection and ear infection, and was prescribed guafinesin with codeine for my cough. Thanks, Stephanie. howsares@att.net
 
Jon's note: I am curious about the gaufinesin myself. I took it for years with heart failure and my cardiologist never squawked.


Marty, December 2, 2004 - Hello everyone, I just wanted to post the latest results from my four month check-up yesterday. I am so excited! Less than a year ago I was diagnosed with LBBB and DCM. I got an ICD four months ago, and I've been carefully following the doctor's advice, along with Jon's! I have been taking Coreg, Altace, L-carnitine, taurine, and C0Q10, and I can't believe the results! My EF went from 25% to 50 to 55%, my mitral valve regurgitation went from mild to none, and my tricuspid valve regurgitation went from moderate to trace!
     From reading here regularly, I know these are not the results everyone gets, but I hope there is some encouragement for everyone to see that "the program" does work! I still have chronic pericarditis pain, but it's so much easier to take when I'm getting results! God bless all of you, Marty. marty.culleton@rs.af.mil


Lowell Pepper, December 2, 2004 - Dear Jon, I had my appointment with my cardiologist yesterday and discussed the reason for continuing Coumadin. He said the lower end of my left ventricle was damaged and did not function well. This results in blood pooling in the lower part of my ventricle, encouraging blood clots. What's your opinion?
     My EF I learned was 30% and not 20% as I had thought. My BNP is steadily going down and is now at 625 from over 2000 right after my heart attack in June this year. According to the ranges I see for BNP, it is still severe CHF. Do you think that it will continue to drop as I recover? Thanks, Lowell Pepper. Lpepper3m@aol.com
 
Jon's note: Blood pooling in a heart chamber is a strong risk factor for stroke, making a blood thinner like Coumadin a very good idea. If your heart size and pressures continue to improve, your BNP level will drop further.


Tom S' December 2 reply to Lowell Pepper's December 1, 2004 - Hi Lowell, It seems to me you answered your own question in the last paragraph of your post. I believe Coumadin is indicated for those with EFs under 30 and atrial fibrillation. I have a combination of those two plus Premature Ventricular Contractions (PVCs) and have been on Coumadin for seven years. I stopped taking it on my own for a year and got a severe scolding and a mini-stroke for trying to determine my own medication regime. My vision isn't back 100% and I have much difficulty reading the computer monitor so it has slowed down my reading and posting on Jon's place, but I feel strongly enough about your post to respond. bigheart@muchomail.com


Barb N's December 2 reply to Cathy's December 1, 2004 - Hi Cathy, A more economical approach to saline nasal rinsing may be the use of a nasal cup. This is part of an ayurvedic (Asian Indian) medicine tradition and regular use has been shown to decrease the incidence of sinus infections and colds. The nasal cup has a thin spout and is used to pour a lukewarm salt water solution into one nostril and out the other. Takes a bit of getting used to but I have found it very helpful. One caveat though, is do not use chlorinated water or iodized salt, or it will sting! protoplasm2@aol.com


Pam S, December 2 reply to Cathy's December 1, 2004 - Hello Cathy, Thank you for mentioning sinus washes - they are great and weird! Our ENT gave us the following recipe for making your own saline solution. It may be a cheaper alternative. To one quart of sterile bottled water, add 2 to 3 teaspoons of canning or pickling salt (rock salt) and one teaspoon of baking soda. You have to use rock salt - not table salt - or the solution isn't correct. Shake vigorously. Store at room temperature. You can use a bulb syringe to do the flushing or a WaterPik. It's important to lean forward, over the sink and not tip your head back so that the solution and yuk run out. Hygiene is important so be sure to keep all the equipment and supplies clean. pam_smallwood@yahoo.com


John's December 2 reply to Lisa's December 1, 2004 - Hi Lisa, I am also on amiodarone and experience leg weakness. If on a grade (incline), it is severe. I also find sudden weakness in the arms and shoulders when lifting the lightest of loads. I have been back and back and back to the CHF folks and they cannot understand what is going on. I had a severly damaged heart (enlarged and mitral valve replacement) and before amiodarone I would suffer severe dizziness on a regular basis but since amiodarone the dizziness is infrequent but my ability to exercise has dropped. The cardiologist said that when the heart is enlarged so too are the veins and arteries and when the heart returns to normal size or close to it, the veins and arteries do not necessarily reduce in size. It truly feels as though I am having an peripheral oxygenation problem. I just removed myself from a statin and after a week have experienced no differences. If I find a solution I will definitely forward such. Best wishes to your father, John. johndavidw@sbcglobal.net


Tom S, December 3, 2004 - Hi everyone, Awhile back I used to make my own "normal saline" solutions rather than buying them for the time in my life when I could use contact lenses. I dug up the old recipe and here it is for those of your who may be interested:

Date and time made ______________
Date and time to discard ______________
Supplies: Table salt (plain, not iodized), Sterile jar with lid, Measuring cup, Measuring teaspoon, Pan with lid, Timer or clock.
 
Steps to follow:
1) To make one (1) quart (32 ounces or 1000 ml), measure 4 cups of tap water and pour it into the pan.
2) Add two level teaspoons of table salt to the water.
3) Cover the pan. Bring the water to a boil and boil for 15 minutes. Be sure to keep the lid on the pan.
4) Remove the pan from heat. Keep the lid on the pan while the normal saline cools to room temperature.
5) Pour the normal saline into a sterile jar. Close the jar tightly with a sterile lid.
6) Label the jar with the date and time the normal saline was made. Also mark the date and time you should throw away or discard any that is left in the jar. This would be 48 hours after you open the jar.
 
Tom. bigheart@muchomail.comJon.


James' December 3 reply to Stephanie's December 2, 2004 - Hi Stephanie, To the best of my knowledge, guaifenesin is fine for most of us. When I said guaifenesin was not applicable to sinus problems, it was because it's not designed for sinus problems. Guaifenesin is not a decongestant - it's an expectorant. Guaifenesin helps break up mucus/phlegm in the chest so when you cough it's a productive cough. It is commonly put together with a cough suppressant like dextromethorphan (Robitussin DM).
     Nyquil, on the other hand, is an all-in-one solution. It includes a decongestant, specifically pseudoephedrine, and that's why CHFers should not be taking it. The vast majority of over-the-counter decongestants have pseudoephedrine (in my experience) and this is why so many cold and flu meds aren't so hot for us CHFers. :-(
     By the way, for anyone interested, I've been recommended to consider Xicam as a homeopathic remedy to aid with the common cold. It is essentially just zinc gluconate. The nasal gel form is a bit uncertain. There are reports and suits pending that cite loss of sense of smell and taste after use of the product. They also have melt-tabs that I'm considering for future use. You need to start it when the cold first hits for it to be effective. It stymies the cold virus' reproduction efforts. jnj@spamcop.net


Joe's December 3 reply to Stephanie's December 2, 2004 - Hello Stephanie, I take 600mg Mucinex daily. This is a substitute for guifenesin. It is on my cardiologist's list of meds and he has never said don't use it. ramblingrosarian@yahoo.com


Oliver's December 3 reply to Noel Brener's December 2, 2004 - Hi Noel, I am seeing doctors at the Heart Failure Center of the New York Columbia Presbyterian Hospital on the Upper West Side of Manhattan. It is an excellent unit and all of the doctors there are great. I suggest trying to call them to set up an appointment. The central number is 212-305-4600. They also call themselves the Center for Advanced Cardiac Care - it's the same thing. They are all heart failure experts with transplant facilities there even though they deal with all levels of cardiomyopathy too. They will probably ask for your history and then find you a time with the most appropriate doctor for your situation. Best of luck! gradfun101@yahoo.com


Carla, December 3, 2004 - Hi, I just wanted to let you guys know that I've finally received some good news! After 11 months, my EF has gone from 25% to 35% and my heart has "almost" returned to normal size. This is the best Christmas present I could have asked for. Thanks to each of you for your support and prayers. carla@cnbt.com


Bill, December 3, 2004 - Hi everyone, Last week I went to the doctor because of fluid on the lungs. He gave me metolazone (zaroxolyn), which helps Lasix work better. I'm on 80mg Lasix twice a day. The side effects of metolazone are lightheadedness when standing or sitting, and to make a long story even longer, that's what has happened to me. bj5250@yahoo.com


Jon, December 4, 2004 - Hi everyone, Here's an update on my Social Security Disability review. As expected, my disability payments will stop the first of February, 2005. That means I have about 90 days to find a large donor, probably corporate. Lots of small donations pay to keep the site online but they can't generate a salary for yours truly that will help pay our bills. If I don't generate a salary out of the site somehow by the first of February: Hi ho, hi ho, it's off to find work I go. ;-) At least the exercise section will be up before then! Jon.


Gene, December 4, 2004 - Hello everyone, I find that, with regularity, when I ingest too much fat (even the good kind, like unsalted nuts), I very quickly (within 20 minutes or so) notice shortness of breath coming on or worsening. Also, I once had a blood test right after a large egg, cheese and bacon croissant (I no longer eat that stuff), and the phlebotomist noted that my blood was much more viscous than normal, almost turgid.
     I think there is a connection between blood lipid levels and SOB, and wonder if you or your readers have read of or observsed this phenomenon also. Thanks for all of your help. Gene. gene.goorchenko@genzyme.com


Robert, December 5, 2004 - Hi, I have a question that must happen to a lot of us. How do you deal with chronic constipation? I do not like taking dulcolax and the like every week. My doc says it is okay under the circumstances, but that leaves you sick for about 1-1/2 days. Someone mentioned a type of enema, not fleet, that he uses. Are there any ideas on this? Yes, I've tried metamucil and the like. bobby010nyc@aol.com


Sandy's December 5 reply to Carla's December 3, 2004 - Hi Carla, That is good news! Congratulations and a wonderful holiday to you and your family! bleuskiiisgrl@yahoo.com


Jack D's December 5 reply to Gene's December 4, 2004 - Hey Gene, I think maybe you should get into a different line of work, maybe fiction writing would be good. You have the imagination for it. Your first story could be about this creature lurking inside, the sticky, swollen and tumescent blood that your phlebotomist discovered. Movie of the week? You could go far. maddjak@hotmail.com


Norma, December 5, 2004 - Hello, Does anyone have a problem with high cholesterol? Mine was 229 and my bad was 157. My doctor put me on Crestor and I am not comfortable taking it because of all the backlash concerning it. He will not take me off it and I was wondering what others do. Thanks, Norma. nvl@pennswoods.net
 
Jon's note: Consider Zetia.


Ron, December 5, 2004 - Hello everyone, My EF is 18% and I have cardiomyopathy. I just completed 3 months of cardiac rehab which I thought my insurance had pre-approved. The cost was $6000. Any comments on the best way to appeal this? Thanks. ronr@kw.com


Noel Brener's December 5 reply to Oliver's December 2, 2004 - Hi Oliver and thanks for your reply about Columbia Presbyterian. I will contact them and see what they can do for me. Best regards. Also, thanks to Jon for providing this site. nbrener@verizon.net


Gene, December 5, 2004 - Hi all, This is an addition to my last post. I do eat a normal amount of carbohydrates, so I don't think there is a problem from that cause. My hypothesis is that fatty foods increase the viscosity of the blood, making it harder to circulate and putting more strain on the heart, both of which then contribute to my SOB. Thanks for any insight. Gene. gene.goorchenko@genzyme.com


Mike, December 5, 2004 - Hello, It's been almost 5 years since my diagnosis and I don't seem to be any worse. Does anybody know the longest survival time after diagnosis? Also, January of 2005 is my third anniversary on SSD. I have read all I can find on re-evaluation and it seems more confusing than the original application. My EF is between 35% and 40% now, but is was 30 to 35% when I was approved. I have not heard from them, but looking at the regulations it does not seem entirely certain that I will. Any thoughts? msisbell@earthlink.net


Peter, December 7, 2004 - Hi, I have a question relating to sudden cardiac death for anyone. From what I read, the statistics show that up to 40% of deaths for CHFers occur due to sudden death. There is also an apparent correlation between the likelihood of sudden death and a low EF function, although this is obviously an over-simplification. Having said this, I do not find references to studies that provide more specifics. How does the risk level differ (statistically) from one group to another? I am not questioning the data or conclusions, but just interested myself in reading more detail about whatever studies have been made. PeterSperl@cs.com


Vicki's December 7 reply to Robert's December 5, 2004 - Hi Robert, My husband has been hospitialized for chronic constipation, so bad that it took them 3 days to get it cleared up. At the moment he is having quite good luck taking Miralax (a prescription taken mixed with orange juice) in the morning along with 6mg of Zelnorm twice a day 1/2 hour before breakfast and 1/2 hour before supper. He eats lots of fruit and veggies which causes lots of gas but constipation can make you extremely ill. He also takes over the counter stool softeners 3 times a day and milk of magnesia about once a month. All of this is under doctor's (a specialist) orders. If you haven't been all checked out, do so please, to make sure it isn't something bad causing it. I hope this can help you, as it is a terrible thing to have to put up with. walleye1@netins.net


Jason M, December 7, 2004 - Hello everyone, Does anyone have symptoms of heartburn? Lately I've been having gas as well. I don't know if it's the meds or the foods I eat. I've never had this before. I think I'm eating good foods, low in sodium and fat. Is there anything specific to stay away from? Any input would be greatly appreciated. Joot@yahoo.com


Chuck's December 7 reply to Robert's December 5, 2004 - Hi Robert, I had the same problem for awhile. I now use Docusate 200mg twice daily. You can get 100mg over the counter or get the 200mg prescription. Good luck. chfrancis@adelphia.net


Art, December 7, 2004 - Hi, I just wanted to post this for others. I had a CRT-D unit placed 3 days ago and the results have been remarkable. I have had heart failure for approximately 8 years, bypass surgery and an ICD and pacer for the same amount of time. I slowly began sinking from a class 2 to a class 3. I was prompted by my electrophysiologist to join the infusion program using Natrecor at the University but had not seen any improvement in 2 months taking infusions 3 times a week. However, within hours after surgery to place a BiV pacer/ICD, the fatigue, SOB, leg cramps and the frigid digits all but ceased. I know that the a-fib was the culprit and that everybody will not get the same results. Right now I feel better than I have in years.
     I encourage all of us with this disease not to give up and to explore every avenue for possible treatment. Please keep this site going, I can't tell how much valuable information I have gleaned over the past year. Aenaval@aol.com


Norma's December 7 reply to Robert's December 5, 2004 - Hi Robert, Concerning constipation, have you tried LBS, Cascara, or Senna by Nature Sunshine from a vitamin store? You take 2 or 3 LBS capsules every night and they keep the poisons working out of you. The Cascara and Senna are stronger than the LBS, you may need them at first. nvl@pennswoods.net


Heather, December 7, 2004 - Hello, I found this web site a couple of weeks ago and was very excited to come across so much helpful information. My mother was diagnosed with heart failure about 9 months ago. One month ago a doctor gave her 6 months to 2 years to live. They said her right heart muscle is very weak and deteriorating, and once that goes, her heart will go. One week later when she was back in a different hospital, a different doctor said that 6 months was a push. She is only 38 years old. I am trying to do everything I can to help her, but it's very hard.
     She was diagnosed with Hodgekin's Disease when she was pregnant with me 21 years ago. They think the radiation treatment and chemo have caused many problems. She had a partial thyroidectomy about 9 years ago and the part she has left is doing nothing for her. She also has pulmonary artery disease, coronary artery disease, low blood pressure and MRSA (a staph infection that makes your body immune to potent antibiotics).
     I am looking into a heart failure specialist for her right now. It doesn't make any sense to me that we were not told about a specialist and I have to take matters into my own hands to get anything explained. Until I found this web site, I was completely clueless, angry and very sad. Yes, most of those feelings are still here, but I feel as though we have a little more control of this horrible situation.
     After reading information here, I was able to finally explain to my mother (after nurses and doctors either couldn't or wouldn't) why Lasix pills were not working for her, why she was so nauseated all the time, and why her skin was so dry. She has been back and forth for the past 3 months or so between 2 different hospitals and a nursing home. She is currently doing okay in the nursing home, but is fighting pneumonia for the second time in 3 weeks!
     She has an appointment with her cardiologist today, and she will be bringing some information off this web site with her and hopefully this will help us. My mother is at such a high risk right now that the nursing home will not even transport her to the doctor! I am looking for any helpful thoughts or suggestions that might help us. Thank you, Heather. heatherljones@comcast.net


Stan, December 7, 2004 - Hi all, I am new here so plese bear with me. It will be two years ago on December 22nd that I was admitted into the hospital with heart failure. I am fortunate that all the meds I am taking are working fine but the one problem I have is my weight. I was a smoker before my stay in the hospital but am not anymore. I have gained 30 pounds and get very discouraged about my weight. Does anyone have any good words of advice to help me shed the pounds? smashinski@comcast.net


Patrice, December 8, 2004 - Hello, There is so much information on this website. It is amazing. My father has just been diagnosed with CHF and they tell us his heart is only functioning at 10%. His arteries and heart are so damaged that bypass is not an option. They did put in an ICD a few weeks ago and said he will be put on the heart transplant list. However, recently at a doctor's visit we were told that they can deny him from being put on the list for any reason they feel necessary, including the fact that he does not have any medical insurance other than Medicare.
     He is very tired all the time and is the type of person that does not like sitting around. He is dealing with many issues. Does anyone have any advice as to how to go about getting him on the heart transplant list? Are we just stuck accepting what they tell us or are there other ways to get him on a list somewhere? He is only 64 years old. Tests show he had a heart attack about 9 years ago and then 2 heart attacks in the two weeks before he was hospitalized at the beginning of November. He had no idea that he was even having a heart attack. He thought it was heartburn! For two weeks he suffered thinking he had heartburn and the flu.
     I live in Michigan but I have been in Florida where they live since the day he was hospitalized and will continue to do so until I feel better about going home. The thought of going home is scary, but I know in my heart that I must go home eventually because no matter what happens, life must go on. Does anyone have any words of wisdom or information to help with what is going on? mikeandtrice@comcast.net


Will, December 8, 2004 - Hi y'all, I was diagnosed in December of 1998 with an EF was 20%. Six years later I'm still at 20%. Is this good or do I need different medication? I'm currently taking 25mg Coreg twice a day, 0.125mg Lanoxin once a day, 5mg prinivil once a day, 40mg furosemide once a day, 25mg Inspra once a day, 81mg aspirin once a day, 500mg calcium per day, and 1000mg noni once a day. stelco@eatel.net


Alexandra, December 8, 2004 - Hello everyone, I have been sporatically posting for a year now. I have also responded and have met lots of friends I e-mail with on a weekly basis. I wanted to give an update and hopefully hear from some other people about how they are doing as well.
     I have been trying my best to stay healthy for my four year old son Jake to have as much of a normal childhood as possible. My last heart failure check-up was on 11/30 and it went well; neither good nor bad news, just the same. My exams have always been pretty stable. I have done everything my doc has advised and it has worked to this point after being diagnosed with heart failure in 01/2004.
     I am an extreme advocate of contacting my doctor for any possible problem or change I may feel. My heart failure doc is wonderful and has never once made me feel as if I were being too cautious or bothersome. My insurance was canceled in May of this year and I just got insurance through my husband's work this past November. Even though I am excluded for pre-existing conditions for 9 months, I will be covered eventually. My CHF doc knows all about my insurance. issues and has never charged me when I did not have insurance. I guess I am extremely lucky in that respect to have a doctor that is truly in it for people.
     I am also waiting for my hearing date for my SSD appeal. The letter my doc wrote to SSD was nothing short of miraculous. He explained all the technical terms, as well as how I feel from day to day and my inability to work "even under the most ideal of circumstances" as he put it. I guess my point is that after reading the letter it made me realize what I have forgotten while I am managing this disease. He stated that I will be a candidate for a heart transplant in the future and that while I am certainly class 3, some days I am clearly cass 4. I don't feel that bad, or at least my attitude is such that I know I can and will live with this for a long time, even though I am age 34 right now.
     I know I push myself almost daily and I do pay the price for it after the fact, but like I said, I am trying to make my son's life as normal as possible. My Coreg was increased to 12.5mg BID. Coreg really takes a lot out of me. Even with all the chest pains, fatigue, meds, SOB, and all the rest that comes with this disease, I still feel like I am just another person living with an illness that can be managed. My diet is by the book. I lost weight. I quit smoking a year ago. I take all my meds on time and as directed. I rest when needed. Like I said, I do everything right and it seems to be working.
     Am I being too idealistic about my disease? I have a BiV pacer and DCM also. Someone please tell me if I am just the positive person I try to be (although I do have the occasional breakdown) or I am living in some sort of fantasy that I can live with this for the rest of my life? Is it entirely possible to manage this disease for decades? I feel like I can and will. Am I crazy to think this way? jakethesnake56@verizon.net
 
Jon's note: I am on my second decade with heart failure, for what it's worth.  ;-)


Sandy's December 8 reply to Stan's December 7, 2004 - Hi Stan, I'm not sure how you have put on the pounds. With the heart failure diet, we all would lose pounds slowly over time. If you don't eat foods with a high sodium content, that would be almost all the prepared foods on the market. Eat only freshly made food, no boxes, cans or bags of goodies, and you will see the pounds start to shed. Good luck to you! bleuskiiisgrl@yahoo.com


Joy's December 8 reply to Heather's December 7, 2004 - Hi Heather, That is how I felt when ER doctors said I had heart failure and sent me home! I was stunned, ignorant, and frightened. Then I found this wonderful, wonderful site.
     At the moment it is my lower legs that are giving me the most grief. They are very painful at night in bed when resting and trying to sleep, and also after a trip in the car, driving or as passenger, if I am out for an hour or more. Of course they also hurt and feel "starved" when I try to walk a short distance. Any comments welcomed. Joy in New Zealand. farrell-kelly@xtra.co.nz
 
Jon's note: Please be checked for PAD - peripheral arterial disease. It restricts circulation in the lower legs. Special blood pressure readings can diagnose this.


Roger's December 8 reply to Evelyn's December 7, 2004 - Hi Evelyn, It appears that your heart failure doc has you back up to a 40% EF. Should you switch to a new doc? That is certainly up to you but I wish my doc could get me back up to 40% EF. I have the fluttering and pounding too and I spent $15,000 for an EPS - money well spent too - but no negative results. An EPS can help diagnose conductive dysfunction. You should consult your favored cardiologist. Rogergthree@earthlink.net


Geneva, December 8, 2004 - Hello everyone, I had a TEE in October of 2004 and my valve regurgitation grade was 3 to 4+ for the aortic valve and was 2 to 3+ for my mitral valve. I then had a stress test in November of 2004 and walked 7 minutes with a maximum heart rate of 176 bpm achieved. I had no chest pain an no ischemic changes at peak exercise. My doctor has suggested that we watch this very closely. His suggestion is that when it becomes necessary, we replace the aortic vValve and repair the mitral valve.
     At what point is the decision made to do surgery? Also, do you feel I should get a second opinion? fecobb2@swbell.net
 
Jon's note: Get a copy of your medical records and test results now for you, and then get that second opinion.


Gatha E, December 8, 2004 - Hi Jon, Thanks for the great job. I know several years ago there was discussion about using oxygen with heart failure. I just got out the hospital with in-home use of oxygen 24/7. Can you refresh my brain about the pro and cons? It sure has helped my shortness of breath. jell855859@aol.com


Jon's December 8 reply to Gatha E's December 8, 2004 - Hi Gatha, I hope whatever caused your visit to Club Med has been resolved successfully! I only have one online article about this. It is old and done with a very small group of patients. See chfpatients.com/heartbytes_old_2.htm#oxygen. The real question usually discussed is whether most CHFers should routinely get extra oxygen or if only selected patients benefit. The answer seems to consistently be that only some patients benefit so it should not be routine. You currently sound like one CHFer who does benefit, at least for now. I am a results-oriented guy for the most part - if it's working, it's working. <g> Jon.


Patrick, December 9, 2004 - Hello, I have been on Coreg now for almost 5 years and Medi-cal (California's insurance program) has just changed the amount they will pay. My SSD is $1216 a month and my monthy deductible amount is $596, which only leaves me $620 a month on which to live. Fortunately they have allowed me to buy 3 months worth of meds at a time which is affordable, but they just changed the amount they will pay for Coreg now and I can only get 200 tablets instead of the 360 needed. I take 50mg BID so getting larger tabs and cutting them down is out of the question.
     I think California's Medi-cal program is being totally unfair to cut me off after so many years, especially since they made me sign a paper giving them the right to attach my home and get repaid back for every dime they spend on me while I'm still alive. Now I am forced to make up the difference somehow and was wondering if I can get some other beta-blocker and take it along with the Coreg. Is anyone taking Coreg with another beta-blocker? In despair, Patrick. NarleyHarleyGuy@webtv.net


Jacy's December 9 reply to Alexandra's December 8, 2004 - Hi Alexandra, It's good to see you post. I'm glad to hear you are stable. My CHF doc told me stable is good! Take care. jackymwb@earthlink.net


Linda O's December 9 reply to Joy's December 8, 2004 - Hi Joy, I am having leg aches and practically the same symptoms you described. Riding and resting seem to be the worst. My feet also hurt sometimes. I visited my doctor in Lincoln, Nebraska yesterday and she is having me skip my lipitor (cholesterol drug) for 3 weeks. She said there is some discussion about problems with this drug. It should also help the constipation problem, she thought. I hope you are getting some help and will feel better soon. It is certainly no fun to go back to the old childhood leg aches. Linda Oline, age 65, EF 24. lnoline@hotmail.com


Frank, December 9, 2004 - Hello everyone, Can anybody out there recommend a CHF specialist in the Tampa, Florida area? I'll even be satisfied with a competent general cardiologist if there is such a thing working here in Tampa, Forida. Thanx, Frank. fesgolf@verizon.com


Jason M, December 9, 2004 - Hi everybody, Well, I went for my echocardiogram today and it came back great. My heart went from 6.4 down to 5.3 cm. My doc said everything looks great and he wants me to go back to work. I'm still on the meds for now (Enalapril, 100mg Toprol-XL), but he said in time we will decrease them. I think I'm still going to go get a second opinion to make sure. My doc said it could have been a virus that infected my heart.
     Whatever it was, staying positive and taking the meds, along with talking to you guys here at The Beat Goes On definitely had a huge impact on the success of my condition. I just want to thank you all for talking and e-mailing me through this. I hope more people have success with this condition, and I will still continue to send out prayers for everyone. I hope to still hear from everyone. Stay in touch, please. joot8@yahoo.com


Jack D's December 10 reply to Linda O's December 9, 2004 - Hi Linda, All statins drugs can break down muscles - every muscle in your body. These drugs inhibit your body's production of CoQ10 which is vital to your body for rebuilding and maintaining muscle tissue. Lipitor even offered a version of it's drug with CoQ10 included in the formula but it wasn't profitable so they took it off the market. Statins can even cause a condition called statin myopathy. A Google link is http://www.google.com/search?sourceid=navclient&ie=UTF-8&q=statin+myopathy. You can read all about it. Talk to your docs. maddjak@eskimo.com


Alexandra's December 10 reply to Jon's December 8, 2004 - Thanks for the encouragement, Jon. At least I know it is possible and maybe I am not all that crazy. Jacy, stable is great right now. I hope we all do as well. Today was a good day with my son, so it makes up for the bad. Thanks! jakethesnake56@verizon.net


Dan Hoffman, December 10, 2004 - Hello, My mother is a heart failure sufferer and I noted that Jon recommends a CHF specialist. We are in St. Louis, Missouri. Can anyone out there give me a name or two of such a doc in our area? Thanks so much for this site. It's great! dhoffman@pangea-group.com


Scott Brown's December 10 reply to Patrick's December 9, 2004 - Hi Patrick, Coreg is available in Canada as carvedilol, a generic. My health provider here in Canada will only pay for the generic version. I suggest you could save quite a bit of money by filling the prescription in Canada with the generic version. I would shop around to find a reliable web site. If you know someone close to the border, that could be a better option to avoid some of the inflated costs on web sites. Even though the Canadian dollar is stronger lately, you will also save on the currency exchange. I hope this helps. Scott Brown. kitchenerguy@rogers.com


Scott Brown's December 10 reply to Jon's December 8, 2004 - Hi Gatha, Jon's online article is mainly about whether oxygen use improves heart function. I do not know the answer to that. However, in end-stage heart failure patients, SOB becomes an increasing concern. Doctors may be hesitant about prescribing oxygen because it might lead to oxygen dependancy. Our bodies can sometimes adapt to low oxygen situations, but once the oxygen becomes easy to get, the body does not need to work for it. At the end of the day, oxygen works for SOB. Many people reach the point where oxygen is necessary and it is good that it is available. It should be considered only when really needed. Gatha, I hope you get feeling better. Thanks, Scott B. kitchenerguy@rogers.com


Carla, December 10, 2004 - Hi, My mother was just diagnosed with heart failure. She also had a cardiac catheterization which determined she has a 100% blockage on the right side of her heart and another 100% in her leg. She is 72 years old and her doctor said she is not a candidate for bypass surgery. Now today we received more bad news that she also has a hole in her heart between the valves, and a blood clot.
     The best part yet: We have only spoken to her doctor one time after the cath and once by phone for about 55 seconds. We don't know what to do. The doctor said meds will help her. I can hardly believe this. Can anyone help, give a suggestion or a tip on what we should do next? Car2cu@sbcglobal.net


Sandy's December 10 reply to Frank's December 9, 2004 - Hi Frank, I am seeing a Dr. R. Walsh in Largo, just across the bridge from Tampa. He is wonderful and has literally saved my life. You can find him in the phone book at the "Heart and Vascular Institute of Florida." Good luck to you! bleuskiiisgrl@yahoo.com


Lori K's December 10 reply to Alexandra's December 8, 2004 - Hi Alex! I had a similar recent visit to my CHF doc. My EF is 47% and my LV size is down below 5 cm. However, he asked his resident and fellow, who were in the room, what heart class I was in and the resident answered 3 and the fellow said one. My doc agreed with the resident, unfortunately. I was really depressed for a day or so, then I got over it. I know what the stats are and feel that if I make it 10 years more without needing a new heart I will be very fortunate. I really care a whole lot more about how I feel and the quality of my daily life. I too have to care for my six year old, and its tough! He is old enough to understand mom's "tired days."
     The way CM was explained to me by both my cardiologists was that if my EF went back to normal range and stayed there, I could expect a relatively normal life span on medication. My EF has decreased from a high of 63% and I have become more symptomatic, despite more medication. I am very realistic about my disease and know only the man upstairs knows my destiny. I can only control my diet, exercise and life style. This humbles me greatly and makes me a better person. I wish you all the best as always. Lori. thegoof86d@aol.com
 
Jon's note: I don't believe any doctor can know your heart class - only you do. Read the description by following the link in your post and decide which functional class fits you best.


Susan, December 10, 2004 - Hi everyone, I have been diagnosed with atrial fib and the doctor has decided it is a permanent condition hence he is not putting me on any arrhythmia medications. However, he wants to put me on Coumadin (warfarin). I have done some searching on the web for info about restrictions and adjustments I will need to make once I start taking it but I haven't located any good web sites. I would most appreciate any info about what life is like on Coumadin. Thanks. sebohnet@hotmail.com


Mike's December 11 reply to Susan's December 10, 2004 - Hi Susan, I also have permanent a-fib. I have been on Coumadin for 4-1/2 years and other than cold hands and the regular Pro-time tests, I don't find much difference in my life. I have not seen any other side effects. msisbell@earthlink.net


Norma Lybarger's December 11 reply to Dan Hoffman's December 10, 2004 - Hello Dan, I also cannot find a heart failure specialist in my area. I live in south central Pennsylvania in a small rural area. My cardiologist is from Johnstown, but I only seen him for my catheterization. I have a very good young family doctor and I hate to ask him about a specialist. He is very aggressive in his treatment of me and I believe he really keeps up on the latest information on CHF.
     By the way Jon, this is just the best place I have found for good solid information and advice! Thanks so much. I also go into www.heartcenteronline.com. nvl@pennswoods.net


Giorg, December 11, 2004 - Hi, I wrote many times in this forum abou my PVCs and bigeminy, asking for suggestions. I am sorry to bother you guys again, but my situation did not improve. Even if my condition as a DCM patient is stable (my EF has been around 30 to 40% for years), my PVCs are worse. There are days that I am 24 hours in bigeminy. Not only that but while previously I could live with that, now when I am in bigeminy I do not even have the strength to walk and my blood pressure is about 85 over 50. I cannot go on like that.
     So my cardiologist wants to put me on amiodarone (Cordarone). I tried that 4 years ago in a period of time when I was not compensated, but it was like poison for my liver. Now my cardiologist wants to re-try the drug because my heart condition is better than 4 years ago and he thinks I can better tolerate that drug. He says it is the only solution. There must be another solution, I think. I tried with fish oils, potassium, and (every now and then) benzodiazepine drugs, but nothing. Do you please have any suggestions? Thank you. giorgclunei@hotmail.com


Bill's December 11 reply to Susan's December 10, 2004 - Hi Susan, I have a-fib also and like with you it is a permanent condition due to an enlarged heart. You need the Coumadin to reduce the chance of having a stroke due to clots that could form in your heart since it isn't pumping blood like it should. I have to watch my vitamin K intake but other than that, I don't see much any side effects. bj5250@yahoo.com


Patrick's December 11 reply to Scott Brown's December 10, 2004 - Hi Scott, Thanks for the info about Canadian meds but I already knew about meds in Canada and even the generic Coreg is 1.16 dollars for each tablet and I am being shorted 160 tabs so by the time I pay the almost 600 dollar deductible for the over 1000 dollars in total meds I need for my asthma and CHF, I have no money left to pay.
     I checked into getting all my meds in Canada and hoped they would all add up to less than the 600 dollar deductible I have to pay here. Even buying them all in Canada it would cost me more than 600 dollars. I guess I'm going to be forced to buy Toprol-XL instead of Coreg and hope it will be okay for me. Thanks and God bless. Patrick. NarleyHarleyGuy@webtv.net


Nancy, December 11, 2004 - Hello everyone, My shortness of breath recently sent me to the emergency room. I was kept 3 days at the hospital and then sent home with a multitude of prescriptions and was told I should feel better in about 6 weeks. The swelling in my legs is so bad on some days that I am swollen when I get up in morning; some days there is minimum swelling. The shortness of breath is worse on some days than others. Why is this? Will shortness of breath and swelling ever really go away? nanahoff@msn.com


Alexandra's December 11 reply to Lori K's December 10, 2004 - Hello, I just got my mail today. My SSD hearing is January 20th, after almost 2-1/2 years. I am so nervous. There will be a doctor there to testify as to my condition from July 4, 2001 to June 30, 2006 (which obviously has not occurred yet). I cannot understand how they can do that. This doctor never even examined me. I was crying to Ted (my husband) because it just doesn't seem fair. One of my sister's friends is on SSD because of a "debilitating car accident that leaves her in constant pain." She watches my sister's 2 kids, refuses any pain medication because it makes her ill, and goes over to my sister's every day to work out! Another acquaintance is addicted to crack and she was granted SSI because of "mental incapacity." It is just so unfair.
     I have a letter from my CHF doc that is great and states, "I have not cleared Mrs. Vader for any type of work and I believe, even under the most ideal of circumstances, she would not be able to hold down a job." My EF is 10 to 20%. He states I am clearly class 3 but there are days when I am class 4. I have over 40 exhibits from all my doctors since birth, some of which number into 65 pages each. I just get so angry that I have to fight for this.
     Ted is going with me to testify to how my life is on a daily basis and what I can and cannot do, which the "can" part is so much smaller that the "can't." I clearly meet all criteria for SSD under the law. I just am so angry I have to go through this.
     Just venting, I guess. I am sure I will be crying a lot before this hearing - just what I need, more stress. I do believe only we know what class we think we are. I do think I am class 3 mostly, but sometimes a 2 and sometimes a 4, which was quite suprising to hear. jakethesnake56@verizon.net


Rhonda, December 11, 2004 - Thank you for letting me find this site! I've had heart failure since 2001 and this year it has gotten worse to me. On this site I have found questions that I need answers to about this disease. I know I will be back. Thanks. arjai4@yahoo.com


Will, December 13, 2004 - Hi, Is there anyone out there who lives in the Baton Rouge, Louisiana area who could recommend a good heart failure doctor? I'm looking for a cardiologist who specializes in heart failure patients. I've had 2 in Baton Rouge, one in New Orleans and one in Houston, and I'm still looking for a good doctor. stelco@eatel.net


Sandy, December 13, 2004 - Hi Everyone, I did it, had my pacemaker inserted one week ago on Monday. Yes, I do feel a difference. I'm not as tired and I can breath so much better. I'm going for my incision check-up tomorrow and want to give my doctor a hug! He has been doing a great job with my care! Happy holidays to all. bleuskiiisgrl@yahoo.com


Linda's December 13 reply to Patrick's December 11, 2004 - Hi Patrick, My doctor told me they have a nurse that all she handles is medicine for helping patients. I worked for my family physician for 17 years and I know they have samples. Try asking if they can assist you. My Coreg is 118 dollars and my Plavix and Inspra are $120 plus. The others have generics so they are much cheaper. Hopefully, these will get cheaper in time. Linda, age 65, EF 25%. lnoline@hotmail.com


Scott Brown's December 15 reply to Nancy's December 11, 2004 - Hi Nancy, There is not enough information in your post to give you a straight answer. It would help to know the kind of meds you were prescribed, the length of time you have been diagnosed, your ejection fraction, which pre-existing meds you were taking (including how long and how much). In general, SOB is one of the hallmarks of these disease. You fill your lungs to capacity, but you are still left short of breath and you end up breathing faster to compensate. For the most part, my breathing is very good. When I get SOB, it is always when it is time to take a water pill. Once the water pill kicks in, breathing returns to normal. There is a reality here. As an individual approaches end stage, SOB becomes increasingly difficult to compensate for with water pills. Do you weigh yourself daily and take duiretic according to your water retention? Thanks, Scott B. kitchener@rogers.com
 
Jon's note: Low sodium diet is critical for reducing swelling (edema).


Linda C, December 15, 2004 - Hello, My father is hospitalised in the final stages of CHF. I know the doctors can't give us an idea of how long, but I guess I'm looking for some symptoms or something, so that I know more of when to use my bit of remaining vacation to stay round the clock with my mother. My dad has an irregular heart beat, emphysema, and an enlarged heart. They recommended palliative care. His appetite is fading drastically. He's very alert and his "levels" are all good, but he tires so easily. The talk of an ICD is no longer an option. I'm aware that his erratic heart beat could take him at any given moment, but are there signs I can see? Like, will his heart rate drop? Oxygen level? Of course he's on oxygen that they keep putting at higher output. Any help will be greatly appreciated. Thank you and God bless. carterlm@sbcglobal.net


Sharon, December 15, 2004 - Hello, How much folic acid are other people taking? I had macrocytic anemia two years ago and have been taking 5 mg of folic acid ever since. I'm going to ask if I should have my dose reduced. It's supposed to be good for reducing homocysteine levels which are a marker of heart disease but I worry about having too much in my blood. lyons@sasktel.net


Debra, December 15, 2004 - Hi, Can anyone recommend a CHF doctor in Ocala, Florida or nearby? Thank you. Debra. pezzer@aol.com


Tunny's December 15 reply to Will's December 13, 2004 - Hi Will, I live in Gonzales and would like to talk with you about doctors in the Baton Rouge area. E-mail me. tunnyg@yahoo.com.


Sherri, December 15, 2004 - Hi, I have a question about coughs. Based on the info in this site, I've learned that taking an ACE inhibitor can cause a persistent dry cough. My dad takes 40mg Accupril each day but seems to have recently developed some kind of a persistent (but not continuous) wet cough. It sounds a little like a smoker's cough but he is not a smoker. Is this just an exacerbation of CHF symptoms? Any ideas on what this might be due to would help. Thanks and happy holidays. sr_email123@yahoo.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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