Jon 6-16 quote for the day
Pat H's 6-16 reply to James' 6-15 insomnia experience
Lori K's 6-16 reply to James' 6-15 insomnia experience
Joanne R 6-16 am retaining fluid - any ideas?
Sharon J W 6-16 Guidant's Contak Renewal 3 AVT, anyone?
Ken's 6-16 reply to Ruthie A's 6-15 taking niacin experience
Elizabeth K's 6-16 reply to Ruthie A's 6-15 niacin experience & BioZ
Larry's 6-16 reply to Bill's 6-14 not being able to work
James' 6-16 reply to Bill's 6-14 not being able to work
Russell 6-16 does anyone buy meds from Canada?
Patrick 6-16 inexpensive dental work
Bill's 6-16 reply to Greta's 6-15 went to the doctor
Greta's 6-16 reply to Ron's 6-15 coping
Norma's 6-17 reply to Russell's 6-16 buying meds from Canada
Sharon J W's 6-17 reply to Russell's 6-16 buying meds from Canada
Jim L's 6-17 reply to Russell's 6-16 buying meds from Canada
Scott Brown's 6-17 reply to Russell's 6-16 buying meds from Canada
Jack D's 6-17 reply to Joanne R's 6-16 making diuretics effective
Roger's 6-17 reply to Joanne R's 6-16 diuretic experience
Roger's 6-17 reply to Ruthie A's 6-15 niacin experience
Roger 6-17 winner!
Jon 6-17 quote for the day
Ron's 6-17 reply to Greta's 6-16 thanks for the info
Ben B's 6-17 reply to Bill's 6-14 coping
Elizabeth K's 6-19 reply to Russell's 6-16 Canadian meds purchases
Pam's 6-19 reply to Patrick's 6-16 Mexican dental work
Cathy D's 6-19 reply to Bill's 6-14 depression needs attention
Tom Campbell 6-19 seek right heart cath experiences
F 6-19 seek ICD & pacemaker experiences
Vicki J 6-19 Coreg and diabetes, Club Med
Jon 6-19 quote for the day
Joanne R's 6-19 reply to Jack D's 6-17 diuretic reaction, thanks
Joanne R's 6-19 reply to Jon's 6-17 fluid and sodium intake
Joanne R's 6-19 reply to Roger's 6-17 controlling diet
Robert 6-19 what tests should I ask for?
Liz Quan 6-19 my husband's treatments
Vicki J's 6-21 reply to James' 6-15 trouble sleeping with heart failure
Ron 6-21 having tooth pulled, seek comments
Art 6-21 seek comments on pacemaker placement
Lori K 6-21 getting worse on Coreg - any ideas?
LouAnne 6-21 what can we do for my mom?
Barb N's 6-21 reply to Robert's 6-19 be very careful with MAOI drug use
James' 6-21 reply to F's 6-19 device implants
Kim 6-22 can't get rid of fluid
Jon's 6-22 reply to Kim's 6-22 possibilities
Jacky 6-22 Coreg, weakness, low blood pressure
Jon's 6-22 reply to Jacky's 6-22 beta-blockers, heart rate, dose
Pat H's 6-22 reply to Ron's 6-21 dental work and heart conditions
Roberta 6-21 why do these drugs make me tired?
James 6-21 seek others with an ELA brand ICD
James' 6-22 reply to Lori K's 6-21 sodium intake
James 6-22 purchasing meds, saving money
Robert's 6-22 reply to Barb N's 6-21 MAOI inhibitors
Joseph P 6-22 seek comments - ablation, Tikosyn, a-fib
Carol 6-22 prayer request!
Greta's 6-22 reply to Ron's 6-21 dental work and heart failure
Greta's 6-22 reply to LouAnn's 6-21 humidity trouble
Myrtle C 6-23 thank you for prayers & more
Jon 6-23 taking a few days off, some quotes
Myrtle C 6-23 which pages are rewritten?
Jon's 6-23 reply to Myrtle C's 6-23 these pages are rewritten
Roger 6-23 good news update, Lipitor experience
Katherine H's 6-23 reply to Kim's 6-22 laparoscopic surgery experience
Katherine H's 6-23 reply to Roberta's 6-21 fatigue and losing weight
James B 6-23 does anyone have an ELA ICD?
Carla 6-23 how long to get better?
Jon 6-28 back again
James 6-28 seek pacemaker experiences
Scott Brown's 6-28 reply to Carla's 6-23 how you feel is major
Tunny's 6-28 reply to Ben B's 6-17 appreciated your message
Janice 6-28 seek heart failure experiences
Melanie G's 6-29 reply to Ron's 6-21 dental work and antibiotics
Clara D 6-29 sinus problems and sodium intake
Carla's 6-29 reply to Scott B's 6-28 feeling great, numbers, pregnancy
Greta's 6-29 reply to Janice's 6-28 finding info, coping, you're not alone
Roz 6-29 seek info on narcolepsy drug
Jon's 6-29 reply to Roz' 6-29 narcolepsy drug for CHF
Lisa 6-29 found one candida solution
Janet H 6-29 do any beta-blockers not raise blood sugar?
Valerie R's 6-29 reply to Carla's 6-23 low EF and feeling good
Jon 6-29 quote for the day
Jon 6-30 quote for the day
Donna H's 6-30 reply to Jon's 6-15 update on my husband
Margaret D's 6-30 reply to Roz' 6-29 Provigil info
Scott Brown's 6-30 reply to Clara D's 6-29 sodium intake, diuretics
Ruthie A's 6-30 reply to Roz' 6-29 Provigil info
Gatha 6-30 foot & leg pain, back problems
Jon, June 16, 2004 - Hi everyone, With a head reeling from too much medspeak reading, I give you today's quote: "Things are not always what they seem." Phaedrus. Jon.
Pat H's June 16 reply to James' June 15, 2004 - Hi, I noticed the insomnia when I first went on meds; that and really weird dreams when I do sleep. Both are side effects mentioned in the pharmacy handout I get with Coreg. I have noticed that as I adjust to a doseage, it fades out, only to come back strong with the next increase. In my case, I take one half to one mg of Atavan as needed. It helps me turn off my mind so I can get to sleep, but I don't always stay asleep. email@example.com
Lori K's June 16 reply to James' June 15, 2004 - Hi James, Just speaking for myself, since I have gone up on my Coreg dose I have developed insomnia. I don't have trouble falling asleep, I just wake up a lot and have some really wild dreams and nightmares. I don't know if any of your meds have recently changed, but that might be a place to start. You have little ones at home like me and our sleep is so precious - the little we get! Take care, Lori. firstname.lastname@example.org
Joanne R, June 16, 2004 - Hi, My body seems to be ignoring my Lasix and I'm puffing up. My cardiologist's office has recommended an increase in my Lasix dose, potassium supplement, and a check of electrolytes in 6 days. They will decide based on those results whether or not to tweak my meds.
Is this typical CHF behavior? If it is typical, somebody among us has experience with it and I'd appreciate any input. Thanks. God bless, Joanne. email@example.com
Jon's note: How is your sodium and fluid intake lately?
Sharon J W, June 16, 2004 - Hi, Does anyone have experience with Guidant's Contak Renewal 3 AVT? I may be going into a trial. I have CHF and almost constant atrial arrythymias. I get cardioverted every 6 to 7 weeks. No, I won't take amiodarone although I'm on multiple other heart meds. I don't tolerate Coreg well (lung problems) but am sticking with the 6.25mg twice a day.
The Contak is a resynchronization pacer with defibrillator (ICD) capability. It will pace me out of atrial flutter and/or fibrillation after a few out-of-place beats. I am in these irregular beats for hundreds of hours now since I don't feel the symptoms early enough to get to the doctor. It's very debilitating, but hopefully fixable. Peace and health to all. firstname.lastname@example.org
Ken's June 16 reply to Ruthie A's June 15, 2004 - Hi Ruth, Do you use over-the-counter niacin or the time-release Niaspan? I currently take 2000mg Niaspan with my evening drug cocktail. The "flashes" have diminished over time, but still occur occasionally. Also, they occur mostly at night, which is easier to take than having them occur midday. As with many heart medications, one must take low doses first and gradually work up to full strength. I also take the statin Zocor, which works very well for me. The chemical mechanisms to lower LDL cholesterol of statins, niacin, and bile sequestrants are entirely different from each other. A good internist should know what regimens to take. Regards, Ken. Semper Fi! email@example.com
Elizabeth K's June 16 reply to Ruthie A's June 15, 2004 - Hi Ruthie, Statins ate my liver so I've been on 1000mg Niaspan for about 5 months now. Their address is http://niaspan.com/niaspan.asp?page=0&sec=0&from=0. I started at 500mg and worked up to 1000. Niaspan is slow-release and I take it just before bed with my daily aspirin. So far I've either avoided any problems with flushing or slept through them.
I did some research on niacin as a vitamin supplement before asking for prescription niacin. There were several time-release varieties that claim to minimize flushing. I hope you quickly find a variety and protocol that works well for you.
For anyone: I checked in with my diabetes doc today. They had a BioZ rep in, demonstrating the ICG machine and asked if I wanted to try it. Who can pass up a medical freebie? ;-) It's a non-invasive (4 patches) impedance cardiography test. Their literature claims the test provides data including cardiac output, systemic vascular resistance, and indices of contractility and fluid status. The whole procedure took about 10 minutes from explanation to patches off and gone, including a short nap for me. All in all it's like an ECG, but it reads out hemodynamic info instead of electrical impulses. So, if you like tracking progress while limiting invasions to your wallet, their web site is http://cardiodynamics.com/cdprof00.html WmOccam@aol.com
Larry's June 16 reply to Bill's June 14, 2004 - Hi Bill, I don't have an answer to your question but I understand what you're going through. When my doctor told me I would never work again it was the hardest day of my life. My EF is only 18% and I have very little stamina.
My wife has been great through all this and does just about everything. She gets mad when I get depressed and tells me my SSD is more than some people make working, but I worked hard all my life and made a good living. We are fortunate that we never based our life style on 2 incomes so we are not doing all that badly. It has been almost 4 years now and I still can't accept it. My cardiologist just put me on an anti-depressant and it seeems to help. Good luck and God bless. Larry. firstname.lastname@example.org
James' June 16 reply to Bill's June 14, 2004 - Hi Bill, Depression is a tough one, especially since Coreg can exacerbate it. The first step is to recognize that it's happening in the first place. I had no idea I was having problems for the longest time. I'd had ups and downs pretty much like anyone else, but then I had my pacer surgery and it got really bad, as in, to the point my wife was worried about me. It was still 6 months plus before I really realized it.
The next step is to discuss it with your doctor, usually your general care doctor. There are a number of antidepressants they can prescribe that will not interact with your meds or your heart condition. Now, if you're like me and don't particularly want another pill, try things like meditation and exercise. Exercise is especially good for its effects on the body as a whole. Of course, discuss any exercise with your physician first!
As for feelings of worthlessness due to the changes your condition has brought on, allow me to offer an alternate perception. For many, many years, women have stayed home and cared for home and hearth while men brought home the money, cut the grass, and took out the trash. Things are no longer that way, roles can be, and are, reversed. Case in point - I am 35 and have a 2-1/2 year old daughter and 10 month old son. My wife works the daily grinder while I stay home and care for the kids.
Don't think that staying home without a formal 9 to 5 job means stagnating, either. I also have a small business on the side to bring in a little extra cash for bills, not to mention the fact that I am very actively learning new things including stock market and investment strategies with an eye towards day trading.
Just because you're not working 9 to 5 with a steady paycheck does not mean you aren't pulling your weight. Of course, you'll have to get up off the couch to do that and that might require a pill to get over the hump, or the very knowledge that those alternatives exist may be what you need to motivate you. Remember - we have a health condition, we're not invalids. Hang in there and if I can be of any help, feel free to e-mail. email@example.com
Russell, June 16, 2004 - Hi, Has anyone tried or is buying meds from Canada? I was thinking of Canada Discount Rx - the prices are 1/3 to 1/2 half of my current meds prices. My doc does not like the idea. His fear is that you don't know what you are getting. Any thoughts or comments from someone who is doing it would be appreciated. Thanks, Russell. firstname.lastname@example.org
Patrick, June 16, 2004 - Hi all, I know that a lot of you are like me and are surviving on a limited SSD income. I had 3 teeth that were loose and Medi-Cal would not pay for any type of bridge work so I looked online for a cheap dentist after geting quotes from a few in my town. I got quotes between 5000 and 7000 dollars US, which was way out of my ability to pay, so I looked online for a cheap dentist and saw a story some guy in Louisiana wrote. It is about a dentist in Tijuana, Mexico, which is the border town next to San Diego, California.
Well, I went to the dentist and had the work done and it was less than 3000 dollars US and not only is he cheaper but the quality of his work far exceeds that of any dentist I have ever been to here in the USA. Without any doubt, this dentist is the best! He lives in San Diego and has his practice in Mexico, which has much cheaper real estate and a much lower pay scale so his overhead is lower which allows him to have lower prices for dental work.
So for anyone who needs expensive dental work which is more than you can afford, Pacific Dental might be one answer. Some people need thousands of dollars of work and if you are one of them or know someone who needs a lot of work, it might pay to travel to San Diego and cross the border to have the work done.
There are lots of motels and hotels in San Diego and a trolley runs all throughout San Diego, so if you fly to the airport in San Diego, getting around is not any problem. He has his own lab next door so his turnaround time is amazing. For instance, you can get a bridge in one day! You just have to make the appointment for early morning when he takes the impressions and then you can spend the day shopping in Tijuana, which has some of the best bargains you will ever find, then come back about 5 PM and he will have the bridge made and he will finish the job.
I'm receiving nothing for this, I just wanted to let those of you without a lot of money not have to do without dental work. If anyone has any questions about anything, feel free to e-mail me and I will answer them and help you with any advice I can.Oh, one other thing. Besides having unbelievably low prices, he also gives a 10% discount if you pay cash. How many other dentists have you ever seen that do that? God bless, Patrick in Riverside, California. NarleyHarleyGuy@webtv.net
Bill's June 16 reply to Greta's June 15, 2004 - Hi, Thanks for your advice. I've decided to do what I did at work. As a lead person there were always something wrong so then I'd have a problem. I would go to my foreman, tell him, then it was his problem. I have this problem, went to the doctor, now it's his problem. I'll just do as I am told. It works well. Thanks. email@example.com
Greta's June 16 reply to Ron's June 15, 2004 - Hi Ron, My CHF was diagnosed 18 months ago and was caused by a viral infection. Now my doc is treating the damage it left behind. At the time of diagnosis, my EF was 20%. The last echo I had 6 months ago showed it to be about 30 to 35%. I will have another echo July 1st. So yes, your EF can improve. How fast and how far depends on many things: Your diet, exercise, mental attitude (probably at the top of the list of most important), your body, and the right meds.
If your doc is doing things right, he should begin to increase your Coreg in increments over a period of time until you reach a target dose of 25 to 50mg twice daily. I am still on 6.25mg twice daily because I can't tolerate the higher doses. I hope you can. Get used to getting tired easily. Remember, your heart is not doing its thing as well as it used to do. Learn to pace yourself.
Jon gave you the best advice about reading The Manual. That was the most helpful piece of documentation I have put my hands on yet. If you can still hold down a job, hurrah for you and hang in there. If not, consider applying for SSD. Jon also has a section on this process. Welcome to the site. All of us are here if you need to unload. Blessings, Greta. firstname.lastname@example.org
Norma's June 17 reply to Russell's June 16, 2004 - Hi Russell, The drugs here in Canada are usually exactly the same as manufactured in the USA. We have very strict standards and it takes longer to get a drug appproved here than it does in the USA. Pfizer and other pharmaceutical companies have production facilities here, so your doctor is off the mark in expressing doubts about quality. We are not Outer Mongolia! My friend in the USA buys his drugs through Canada Pharmacy's web site and has been very pleased at the savings. Please don't worry about buying your drugs from here. As long as it's legal, you will find the drugs are completely safe. Norma. email@example.com
Sharon J W's June 17 reply to Russell's June 16, 2004 - Hi, Regarding purchasing drugs from Canada, beware of the online companies - go with a legitimate one. My cancer doctor gave me info on one in particular and I have been getting some of my brand name drugs from them since March of 2002. They seem very professional and thorough. You must return 5 to 7 pages filled in by you and your doctor to set up with them and it's worth it.
E-mail me if you want more info. They don't accept insurance, but I don't have any. You will do better with most generics and some brand name drugs on www.drugstore.com or www.costco.com. You do not have to be members. firstname.lastname@example.org
Jim L's June 17 reply to Russell's June 16, 2004 - Hi Russell, I get drugs from Canada and thank heavens there is somewhere you can get reasonably priced medications. I get rhinocourt aqua for a sinus condition. A month's supply at CVS cost $72. I get double strength from Canada, which means it lasts twice as long, for $22. Because of the double strength I am getting it for an equivalent price of $11 - quite a difference.
As far as not knowing what you are getting, this can happen anywhere, including the USA. They can be bootlegged but you can take assurance that Canada is more strict on their version of FDA than we are. Many meds come in USA company packages. I recommend it. Good luck! Jim L. email@example.com
Scott Brown's June 17 reply to Russell's June 16, 2004 - Hi Russell, I live in Canada. In most cases, the heart medications sold here are identical to the same drugs in the USA. In fact, most of them are manufactured at the same location and the only difference is the price.
If you have a site in mind, send me an e-mail and I will research it for you to ensure the place is legitimate. In the last year, there are whole US cities who buy their drugs in Canada for their employees drug plan and save millions. Thanks, Scott. firstname.lastname@example.org
Jack D's June 17 reply to Joanne R's June 16, 2004 - Hi, I got to where my diuretics weren't working so I started experimenting; skipping days. Now I take 3 different diuretics: Lasix, edecrin and torsemide. Day one I take Lasix and torsemide. If I need a boost I take another torsemide later in the day. Day two I take nothing. Day 3 I take edecrin and torsemide and if I need a boost I take another torsemide later in the day. Day four I take nothing. Day five it starts over.
If I take anything on a day when I'm supposed to skip diuretics, it takes several days before they start working again. If I goof and take the same drug on day one and day 3, I'm messed up for several days before it works again. email@example.com
Roger's June 17 reply to Joanne R's June 16, 2004 - Hi, My doctor gave me zaroxolyn 2.5 mg to take 1/2 hour before taking Lasix. This helps to flush it out; of course without eating since eating slows the process down too. When I first started with CHF, there were 2 times I had to do this for 2 days in a row because I was holding fluid. I can now go one to 2 weeks in between the Lasix with my intake of 300mg of sodium per day. firstname.lastname@example.org
Roger's June 17 reply to Ruthie A's June 15, 2004 - Hi, After my first bypass in 1989, the doctor put me on niacin and I took it awhile till one of the blood tests showed something bad happening with my liver and he took me off it. email@example.com
Roger, June 17, 2004 - Hi everyone, I have never won anything worthwhile in my life that I can remember. We had a relay for life (every year - my wife is a breast cancer surviver). Anyway, I got a notice that I won a drawing for a 6-month fitness membership at our health center. It is worth $171! I couldn't believe it! This is somewhat like a YMCA. firstname.lastname@example.org
Jon, June 17, 2004 - Howdy-doo, Here's the quote for the day: "An open mind, so we are told, lets in everything. But so does a garbage can. An open mind must first screen an argument for its relationship to common sense and virtue before investing in its serious consideration." Michael Long. Jon.
Ron's June 17 reply to Greta's June 16, 2004 - Hi, Thanks for the information. It came as a total shock to me when I was told I had CHF. I exercised and did all the "right" things. I'm going to have a sleep study done and am trying to keep a positive mental attitude. This board is very helpful. email@example.com
Ben B's June 17 reply to Bill's June 14, 2004 - Hi, When I was told I would have to go on permanent disability and would never work again (in 1998) it was the hardest thing I ever faced. I still remember talking to the representative at the long-term disabilty insurer and holding back tears when I said the phrase, "I can never work again." At that time my EF was 10% and not only couldn't I work, I thought I only had 5 years to live. Eventually my girlfriend dumped me due to my understandable depression. What a joy.
Well, to make a long story short, I'm writing this message from the desk at my job I've had for a year and a half now. I know I was lucky, but some people do get better - not all people, but some do. Even while I was still very ill I did what I could, by volunteering and taking a class here and there. In the years I was off I finished a Master's degree.
Now my EF is around 45% and I feel good. It doesn't happen for everybody, I know. But you will really increase your chances if you follow all the rules: Take meds, don't drink or smoke, keep your weight down, eat low sodium, all these things. A positive attitude helps. firstname.lastname@example.org
Elizabeth K's June 19 reply to Russell's June 16, 2004 - Hi Russell, We live within driving distance of the border and have been buying our mother's Zocor and Plavix from a pharmacy just across the line. For 3 years it's been the same stuff we got here at 2-1/2 times the price, right down to the packages, paper, and graphics.
Her Canadian doc is a bit of a character, but it adds to the adventure. The scripts all come from her doc here and the Canadian doc just rewrites them once a year. I don't know how mail order pharmacies work, but we did some added paper work at the pharmacy the first time we went and now they can also mail her scripts. WmOccam@aol.com
Pam's June 19 reply to Patrick's June 16, 2004 - Hi, My husband just went to Mexico last month and had 3 crowns done; he was really happy with the results. He went to a 4-man office in Tecani and paid less than $1000, which included 3 crowns, 2 posts, and some fillings. I worked for a dentist for 35 years and am impressed, so far. We will see how it stands up. It does pay to shop around. Pam. email@example.com
Cathy D's June 19 reply to Bill's June 14, 2004 - Hi Bill. Depression, aack! Speaking as a woman who has battled depression all my life I can safely say it's one of the most debilitating conditions. The thing I have learned over the years is to recognize it early and seek treatment; medication can be a godsend! Based on your particular symptoms, a doctor can probably prescribe something that will target what you need. Beyond meds, I cannot recommend short-term therapy strongly enough. It will help you recognize your triggers. It will give you a place to safely vent your anger and grief, rather than spilling it all at home.
Now as the wife of a young man (47) with severe CHF, let me speak to how you can help your wife. Take care of this depression. It's bad enough that you and she are worried sick over your health. As hard as it is, you have to be proactive about this. Your mental health profoundly affects your physical health. It takes a lot of energy, which you may not feel you have, to get up and do something about this but I guarantee if you do nothing but vegetate, you will become more depressed and bitter. Believe me, it is an unattractive attitude and you both deserve better.
Bill, I sympathize with you completely. It isn't fair that you can't work and may never work. It isn't fair that your wife is shouldering more of the load. This is not what either of you signed up for. When your life is out of control, the only thing you can control is your attitude. So if the depression has already gone on for 2 weeks, you owe it to your marriage to seek treatment today. Cathy, wife of Kitt who has CHF, mom to John who has bipolar disorder, Eleni, and Christian (severe autism). You can't scare me, I have children. firstname.lastname@example.org
Tom Campbell, June 19, 2004 - Hi, I have recently changed heart docs to a CHF specialist at a university hospital. He wants me in the hospital for 3 or 4 days to do a right heart catheterization that will measure pressure in different parts of the heart, among other things. He also wants to try some intravenous medications while I am in. If anyone has experience with this sort of thing, I'd appreciate reading about it. email@example.com
F, June 19, 2004 - Hello, I have cardiomyopathy and CHF. My EF is 10%. My diagnosis was about a year and half ago and my EF has not improved. Now they want to implant two devices in my body: an ICD and a pacemaker. Does anyone have any comments? Has anyone else had this done? Your comments welcome. I am still working.
Vicki J, June 19, 2004 - Hey Guys, I just experienced what you mean by Club Med. I've been in Vanderbilt Hospital twice in the last couple of months. This time they changed a lot of my meds. They dropped my Coreg from 37.5mg twice a day back to 25mg twice a day. When they first raised it, my diabetes went wild with 500+ readings and I gained back the 40 lbs I had just lost on Weight Watchers. So, I'm starting over on Weight Watchers. I can't stand the extra weight even though I know some is fluid. I'm still on massive amounts of insulin - 80 units lantus and 80 units Humalog, 3 to 4 times a day. I was totally off shots before they put me back on 37.5mg of Coreg. Hopefully I'll get back to normal soon. They were trying to lower my heart rate but it didn't work. Best wishes to all. Vicki J. firstname.lastname@example.org
Jon, June 19, 2004 - Hiya everybody, Here's the quote for the day: "We sleep safe in our beds because rough men stand ready in the night to visit violence on those who would do us harm." George Orwell. Jon.
Joanne R's June 19 reply to Jack D's June 17, 2004 - Hi Jack, What a plan. It must have taken a lot of trial and error to work all that schedule out. I seem to be returning to Lasix reaction as I expect it with the increased dosage and addition of potassium. I've no idea if that has any bearing on the reaction or not. I will hang on to your info for future reference and I appreciate your response very much. Thank you, Joanne. email@example.com
Joanne R's June 19 reply to Jon's June 17, 2004 - Hi Jon, Not to worry about my sodium and fluid intake. I have a knee jerk reaction to record keeping, so my diet is recorded daily. That may be anal I know, but that is why I didn't understand my lack of reaction to the Lasix. :-) God bless, Joanne. firstname.lastname@example.org
Jon's note: I'd call it smart. I often find that if I write it all down, I find that I am not doing what I think I am doing quite the way I think I am doing it ;-)
Joanne R's June 19 reply to Roger's June 17, 2004 - Hi, I had a grandfather who controlled his diabetes by living on beans. He was so in control of his diet that he could have his double shot of Scotch whiskey once a day. While I could not recommend this, it does leave me in awe of a person who can keep his sodium down to 300mg a day. I have only been on the CHF drill for 3 years but I have practically worn out a copy of Netzer's The Complete Book of Food Counts. Seriously, how do you do that? E-mail me! Thanks, Joanne. email@example.com
Robert, June 19, 2004 - Hello, I am experiencing extreme tiredness in my legs. I can barely cross a street. The only test I have had was a year ago, it was a MUGA and my EF was 22%. To think that 1-1/2 years ago I was playing basketball and swimming 3/4 of a mile a day. My depression is very bad. Coreg nearly made me extremely suicidal. I am now on a MAOI inhibitor for post-traumatic stress and depression. My blood pressure is still high. I am on 30mg Accupril for it, but does not lower it. I tried several others but could not tolerate them.
Does anyone know what tests I might recommend to my cardiologist to be more diagnostic? I am having a very hard time with such marked limitations in my life. My attitude is very poor. I pray for acceptance all the time yet I am very depressed and anxious. I am 55 and guess I sound like a baby. I can't help it. Getting on SSD was no problem for me. Thank you. firstname.lastname@example.org
Liz Quan, June 19, 2004 - Hi, My husband had a heart attack a year ago. Two of his arteries were 90% clogged and the third one they said they couldn't do anything with since it was so diffused. He had stents put in them and within 6 months they reclogged. They told us his only alternative was a heart transplant. We started to look into alternative medicine. Right now he is doing EECP, chelation, plaquex and Natrecor. I can tell you it's been helping a lot. His BNP count was 2600 and now it's down to 345. He feels better too. I would suggest it to others. email@example.com
Vicki J's June 21 reply to James' June 15, 2004 - Hi, I'm going into my third year with this. At first I didn't sleep any, just read about this all night long. My dad died with the same viral type of CHF. I tried Ambien and it didn't do anything. I had some of the litte blue football-shaped Xanax, one mg, I think. I took one of those and sat down to read a book and the next thing I knew it was morning. It worked wonders for me. Sleeping pills just didn't get it. I do have to rotate sleeping areas - sometimes bed, couch, but most of the time in a recliner so my head is elevated. It may not work for you but it wouldn't hurt to try after asking your doc. Vicki J. firstname.lastname@example.org
Jon's note: Just a comment - anytime family members have died from "viral" cardiomyopathy, question your own diagnosis. It may be familial. Only positive biopsy results for antibodies to a virus actually "confirms" a viral cause.
Ron, June 21, 2004 - Hi, I just started on Coreg and am going to have a tooth pulled in a couple of weeks. Should I do it and if so, what should I be concerned about? Thanks for your help. email@example.com
Art, June 21, 2004 - Hi, Thanks to all those that responded to my post on having a biventricular 3-lead pacer-ICD placed. I have spoken to my cardiologist and he informs me that the device will need to be in the upper left quadrant. My 2-lead device is in the lower left quadrant below my diaphram.
My question is why do I need to change the position of the device? I've got the scars of entry and reentry 5 years later. He says that the leads are not long enough in the newer device. All comments would be appreciated. Aenaval@aol.com
Lori K, June 21, 2004 - Hi everyone, I am still titrating up on Coreg and am at 6.25mg BID. As I go up on the dose I have more SOB and chest pains. In addition, I have been feeling really shaky and like I am on uppers or something. Can your heart get worse on Coreg?
I have mild asthma and that may be factoring in, but I have no wheezing so far. I really want this stuff to work but my pulse is erratic and I get lots of irregular beats during the night. Does this sound familiar to anyone? I am going to call the doc tomorrow and check in. Thanks for any input. I'm stumped! Lori. firstname.lastname@example.org
Jon's note: Have you read the section called "Things You Should Know" on the Coreg page? Also follow the links immediately beneath that section.
LouAnne, June 21, 2004 - Hi, My mom has had 2 bypass surgeries in the past 16 years. She was diagnosed with CHF about one year ago. Her mom, now deceased, suffered with CHF for years. My mom has always been active and is now extremely depressed to the point where she overdosed on Tranxene and Prozac 3 months ago, but fortunately did not succeed in her attempt to end her misery. She is now undergoing therapy.
This past week, her CHF has struck with a vengence because of the hot, humid climate in which we live in the south. Please tell me how we can help her. She has talked with her doctor and increased her diuretic and potassium. Any other suggestions? Thanks. email@example.com
Barb N's June 21 reply to Robert's June 19, 2004 - Hi, Please make sure that your cardiologist is aware that you are taking an MAOI and be extremely careful regarding your diet. There is an extensive list of foods (that contain or break down to tyramine) that you should not eat because the MAOI will prevent you from getting rid of the tyramine - this can lead to malignant hypertension and in some cases be fatal.
Some medications for high blood pressue can also interact with certain MAOI drugs, so your cardiologist needs to be aware of that also. I believe that for most MAOI class drugs, heart disease and elevated blood pressure are contraindications, so you may want to discuss alternatives to the MAOI with your primary care provider or whomever prescribed this for you.
If you are suffering from depression, abrupt withdrawal from an antidepressant without medical supervision would not be wise. Be careful and stay well! firstname.lastname@example.org
James' June 21 reply to F's June 19, 2004 - Hi, Several of us have a pacemaker and ICD implant. It's a single device now. The procedure takes a few hours, followed by an overnighter as they tweak the device and then a few weeks of recovery from the surgery. It can make a great deal of difference in your overall quality of life.
The pacemaker the doc wants to put in is most likely a bi-ventricular pacer for cardiac resynchronization therapy. These pacers have 3 leads instead of two. The nice thing about these devices is that they take the pace from your heart's natural pacer. I've no doubt Jon will have added a few links to my response above. There is information on this site about BiV pacers, CRT, and ICDs. Give it a read and you'll obtain more information. :-) If you have any questions or want a blow-by-blow of my own experience, look up my bio and/or drop me an e-mail. email@example.com
Kim, June 22, 2004 - Hi, I have not been here in about a month. I had my gallbladder out (laparoscopically) but they kept me in the hospital overnight. I gained 13 lbs from the IV fluids they gave me and have not been able to get it off. I also noticed something else, I had to stop my Coumadin for 4 days prior to surgery and I lost 2-1/2 lbs. Since I have been home I have increased bumex from 2 to 4mg and for a few days I took 6mg.
I do not know what to do. I have only gotten rid of about 5 lbs of fluid. I can lose 5 lbs after I take my bumex but it is there the next day. I watch my fluids. It has been very hot and I have been drinking more but not that much more and my sodium intake is good. Does anyone have any advice? I am kind of at the end of my rope with this. My EF is 40 and my PCP says does not understand why I am still having these problems. firstname.lastname@example.org
Jon's June 22 reply to Kim's June 22, 2004 - Hi Kim, I hope someone has other ideas besides this. If 6mg Bumex doesn't get it done and your sodium intake is low, I'd be asking for an echo to see if my heart function has dropped. Laparoscopic surgery is hard on a CHFer's heart; see chfpatients.com/surgery.htm#laparoscopic. Your heart may not have bounced back to its previous level. Ultrafiltration may also be an option in the short-term; see www.chfsolutions.com/.
When scheduling surgery, always discuss use of IV fluids with your surgeon. Dr. Marc Silver (Success With Heart Failure) says high-sodium solutions like those normally used can cause serious edema. See chfpatients.com/ms/ms_archives.htm#question_13. Jon.
Jacky, June 22, 2004 - Hi, I have been on Coreg for a year and a half. My EF a year ago was still 35% but I hope it will have improved when I have my echo today. However, my fatigue has increased dramtically in the last 3 months, and my leg and arm weakness has also increased. I get flashing lights for a few seconds when I go upstairs, which reminds me of migraine, which I don't get anymore. I saw a new doc a month ago and he doesn't think the weakness has anything to do with my cardiomyopathy! The old doc (he moved) seemed to think it was. I suddenly wondered if it could be the Coreg after this length of time. My blood pressure zooms down after taking it to 90/50 and lower, with a heart rate of average of 55. Any advice, anyone? email@example.com
Jon's June 22 reply to Jacky's June 22, 2004 - Hi Jacky, I would suggest switching to Toprol-XL, which does not lower blood pressure nearly as much as Coreg. See the Coreg page for more on that. If not switching, ask for lower-dose pills, and try taking smaller pills 4 times a day instead of a bigger dose twice a day. Keep in mind that Coreg's manufacturer states that, "If pulse rate drops below 55 beats per minute, the dosage should be reduced." Jon.
Pat H's June 22 reply to Ron's June 21, 2004 - Hi Ron, You need to call your doctor and let him know about the dental visit. My doc gave me antibiotics to take beforehand just to get my teeth cleaned. Generally, the dentist needs to know about any kind of heart condition and you will probably need some kind of antibiotic regimen prior to getting the tooth pulled. Mondays_child_1@yahoo.com
Roberta, June 21, 2004 - Hi, I just have a question. I have had a problem with high blood pressure most of my life, but this past year it spiked and stayed spiked to 200/100, so I was started on avapro, first at 150mg, then 300mg plus a calcium channel blocker. I stopped the calcium channel blocker because I did not like the fluid retention in my legs. Anyway, the avapro does help some.
Why is it making me so tired? I sleep more, get exhausted when I walk a half mile and I used to walk 4 miles fairly easily before avapro. Although I am overweight, I have recently lost over 20 pounds with quite a bit to go, but this fatigue is hard to deal with. Does anyone else have the same problem with avapro? All pressure meds I have done so far make me tired. I took beta-blockers and they made me tired but gave me insomnia, so several years ago I quit them.
Do angiotensin blockers pretty much do the same thing and have the same side effects for the same person, such as if avapro makes me tired then others of the same class would too? Thank you in advance. firstname.lastname@example.org
James, June 21, 2004 - Hello All, I was diagnosed last year with cardiomyopathy and CHF soon followed. An ICD was implanted in February of this year. I would like to hear from anyone with an ELA brand ICD. I have a few problems with it. Mainly, it is hard to get it interrogated. The doc says that is from a lack of reps. Thanks. email@example.com
James' June 22 reply to Lori K's June 21, 2004 - Hi Lori, On an off-chance, are you consuming less than 2000mg (2g) of sodium and no more than 2 liters of fluids (includes coffee, tea, soda, juice, and so forth) daily? I realize this may be basic but your symptoms are consistent with too much sodium and fluid in the diet so I thought I'd mention it just on the off-chance.
In my case, while we were increasing Coreg dose (I'm at 12.5mg twice a day) I was consuming 5000mg (5g) or more of sodium each day and 2 ot 3 liters of fluids. As soon as I dumped the sodium, things suddenly started working. Of course, that was after I ended up with an ICD/BiV pacer. firstname.lastname@example.org
James, June 22, 2004 - Hi, An interesting thing happened tonight when I went to pick up my furosemide (generic Lasix). I'm always forgetting to refill the script and it never fails that I run out and have to scramble to get it refilled. So I asked the pharmacist if I could just get 2 months worth to make it easier. It only costs $9.99 so $20 so not have to worry about it for 2 months is worth it. This was at Walgreen's. The pharmacist first told me the insurance company wouldn't pick it up and I said fine, then he tells me that 60 days worth would also cost $9.99. When I expressed extreme confusion he informed me that the Walgreen's pharmacy's minimum charge on a script is $9.99. He then told me that 100 days would only be $13.99!
He told me that whenever the price of a script is below co-pay and therefore a cash purchase, it would behoove me to ask for pricing on larger quantities. He noted they usually catch this and that it was common with HCT but that he was not aware furosemide had dropped that low in cost. I hope this helps some others save a few dollars. I have a couple-three years of buying this stuff at the higher price-lower quantity ratio. Live and learn! email@example.com
Robert's June 22 reply to Barb N's June 21, 2004 - Hi Barb, I have been on MAOI inhibitors for quite a period of time - marplan, nardil, and parnate. The diet restrictions and everything have been modified a great deal. Unfortunately, it is the only meds that helps me with night terrors and post-traumatic stress syndrome. I have had problems since serving in the Marine Corps in Vietnam many years ago. Thank you for your concern. firstname.lastname@example.org
Joseph P, June 22, 2004 - Hi Everyone, Long time since I posted. I am going in for a spot ablation to correct the a-fib that has returned. I am also on a med call Tikosyn for the a-fib. Any connents would be appreciated. I would do almost anything to stop the a-fib. It drives me nuts at times. It robs me of my strength and air. Joseph P. email@example.com
Carol, June 22, 2004 - Hi, My husband John needs some prayers right now so I am asking for everyone to pray for him. He is class 4 CHF but last Friday he was in a head-on collision. He is 68 years old and with his degree of heart disease the doctors are amazed that he has survived the trauma.
He has massive bruising to his lungs, many broken ribs resulting in a flailed chest, and a perforation to his lung. They are keeping him sedated while his ribs try to heal. He has a fever that started last night. It may be his body fighting his injuries. He has been on a ventilator and they are trying to wean him off it. When they took him off for a few moments, they found his breathing wheezy, so gave him some Ventalin. That seems to be okay now.
He is not on Lasix right now as they are trying to keep his blood pressure up. He is scheduled for a tracheotomy so they can get the tube out of his mouth. However, they say he is "fine" and "stable." He is a fighter, but I think he needs lots of prayers right now. Thanks to everyone. Carol. firstname.lastname@example.org
Greta's June 22 reply to Ron's June 21, 2004 - Hi Ron, I really don't think Coreg will be the problem with dental work. It is smart to take a round of antibotics prior to having any dental procedure. The chance for bacteria to enter your bloodstream is strong with teeth cleaning, thus putting your heart at risk. Antibotics will counter this. Also, if you are on Coumadin/warfarin (blood thinner) you need to consult your dentist about this. He may suggest that you discontinue it for a few days prior to your dental work. I hope this helps. Blessings, Greta. email@example.com
Greta's June 22 reply to LouAnn's June 21, 2004 - Hi LouAnn, I live in the south too, Arkansas to be exact. This humidity is rough on my heart, it is like trying to breathe pea soup. The best solution I can offer to make it easier for your mom is to buy a dehumidifier for the house. Also, keep the air conditioner a little cooler than you normally would. If the cost of the extra electricity is too much, compensate using fans. The cooler air is easier to breathe and the air conditioner also helps to dry out the inside air. It is confining, but staying at home out of the heat is also a big help. I hope my suggestions help. Blessings, Greta. firstname.lastname@example.org
Myrtle C, June 23, 2004 - Hello, Thanks to all who prayed for me. Our granddaughter's wedding and the parties before it all went well for me. I didn't crash and I have to thank my Lord for that. It has been a long time since I felt good enough to get through a night of good fun, lots of noise, and talking to many people. Thanks again - prayer does help. Omie of 3 grandkids (one down, two to go). email@example.com
Jon, June 23, 2004 - Hi everyone, We are going to visit our daughter so I'll be out of touch until Monday morning. Here's a few quotes for ya, though: "Look to the essence of a thing, whether it be a point of doctrine, of practice, or of interpretation." Marcus Aurelius.
"Ours is an age besotted with graphic entertainments. And in an increasingly infantilized society, whose moral philosophy is reducible to a celebration of 'choice,' adults are decreasingly distinguishable from children in their absorption in entertainments and the kinds of entertainments they are absorbed in - video games, computer games, hand-held games, movies on their computers and so on. This is progress: more sophisticated delivery of stupidity." George Will.
"Divine Providence will judge a country by 3 things. How it treats those in the dawn of life; how it treats those in the shadows of life; and how it treats those in the twilight of life." Hubert Horatio Humphrey.
I'll be back sometime Monday and so will the forms for posts! Jon.
Myrtle C, June 23, 2004 - Hi Jon, You mentioned rewriting several of the articles you have on this web site. Any chance you could mention the ones that have been rewritten? As always, God bless you and your family, Myrtle C. firstname.lastname@example.org
Jon's June 23 reply to Myrtle C's June 23, 2004 - Hi, All articles on the following pages are done: (I've been very busy)
The Medspeak pages have had a lot of definitions added and I think I have all the links on this crazy site working now - about 8800 in all. I am still rewriting about another dozen pages, then I will catch up on mailings and The New Page. Jon.
Roger, June 23, 2004 - Hi All, I saw my regular doctor 2 weeks ago and he was pleased and then I saw the cardiologist this last week. All is well! He said I'm getting "boring" and will see me again in 6 months. I still have the 7 to 14 day weight gain but 80mg of Lasix and a zaroxolyn take care of that.
I know we are all different and I see a lot of the people here having trouble with Coreg. I am at 25mg twice a day. The thing I had trouble with was lipitor. Out walking one day and my legs just kind of froze up. Now I am on zetia and have no more trouble. At work I have to wear steel-toe shoes and they weigh a ton. If I try to walk too far too fast, I can feel my legs tiring. email@example.com
Jon's note: "Composite" toes in sneakers meet the ANSI standards and weigh almost the same as regular tennis shoes. You can find them at most shops selling regular steel-toed shoes, as well as at Wal-Mart, etc. I wore them at the old lumber mill in 1994 - and our boss checked for steel toes with a hammer!
Katherine H's June 23 reply to Kim's June 22, 2004 - Hi Kim, I had my gallbladder out in January and it takes awhile for everything to start working again. I had a terrible time with my asthma right afterward because everything got so stirred up and my stomach was so distended from the surgery that breathing became difficult. Fortunately, my PCP ordered respiratory treatments while I was in the hospital. Some stupid resident tried to stop them and I laid into him big time. Then when the surgeon came around, and the resident acted as though the treatments were his idea.
I'm telling you this so you know that even though the surgery appeared to be minor, it's major surgery having an organ removed, so all kinds of things can get stirred up. Don't get too discouraged but just keep working with the problem and hopefully in a few months it will become a non-issue. firstname.lastname@example.org
Katherine H's June 23 reply to Roberta's June 21, 2004 - Hi Roberta, Have you considered that the process of losing weight might be making you tired? I have found that it has a profound impact on my energy level, something my cardiologist and PCP agree on. email@example.com
James B, June 23, 2004 - Hello all, Is anyone else out there having trouble with an ELA ICD? I would like to hear from anyone with the same device. I am having trouble with follow-up. It was implanted in February and I still haven't gotten my ID card. Thanks, and God bless. firstname.lastname@example.org
Carla, June 23, 2004 - Hi, I went for my echo yesterday and the tech commented that I'm still holding at 25%. Of course, she really shouldn't have said anything and I really shouldn't get upset until I talk to my doc next week. However, it's been 6 months since my original diagnosis of DCM and I was really hoping to see some improvement. I just wanted to check in with you folks and see how long it took for "Coreg and friends" to kick in. I know it can sometimes take years to see improvement! email@example.com
Jon's note: The real question is, "How do you feel?"
Jon, June 28, 2004 - Howdy-doo everyone, For those old-timers who know about her, my daughter is fine and is making an outrageous amount of money this summer doing the numbers game as an intern for one of the nation's big four accounting firms. Gotta brag! <g> They want to keep her after she graduates next year but she's too smart to commit to anything yet. She got her summer class done despite traveling extensively for her training and working full-time, so she's set to make her double major (accounting and management of information systems) on time.
Here's the quote for the day: "Nothing in the world is more dangerous than a sincere ignorance and conscientious stupidity." Martin Luther King, Jr. Jon.
James, June 28, 2004 - Okay, This is a weird one for those of you with pacers. When we go shopping at one particular store (our primary one) I find that while pushing the cart I get small shocks to my hands on the handlebars of the cart. This never happened before my pacer was put in. Coincidence? firstname.lastname@example.org
Scott Brown's June 28 reply to Carla's June 23, 2004 - Hi Carla, I 100% agree with Jon's point. My EF has been around 23% for the past 3 years. There has been no clinical improvement, but also no decline. I feel a lot better than I did a year ago. One person can feel great with an EF of 25 and another person can feel lousy with an EF of 35%.
Keep in mind that your heart has been stretched out of shape. If the meds are helping you to maintain your current clinical condition, this could be considered success. There are lots of people with DCM who are getting worse, and faster. How are you feeling, anyway? Scott B. Scott.Brown@clarica.com
Tunny's June 28 reply to Ben B's June 17, 2004 - Hi Ben, I enjoyed reading your message on the 17th. I am following in your foot steps, doing all the things you have. I am at 10% EF and believe I will get up to 45% as you have. Thanks, it's good to here from you. Thanks again, Tunny. email@example.com
Janice, June 28, 2004 - Hi Everyone, I just found out about 5 weeks ago that I have CHF and I'm not sure what to expect or do. My EF is 32% and after I spent 6 days in the hospital I really don't feel bad except for the fact that I'm a little tired and a little depressed. I will be 52 years old next month and I know I need to lose weight but I feel as if it's hard to do since the doctor says I should be walking on the treadmill 5 minutes 4 times a day, so when does the exercise come in? I'm just looking for someone who could tell me what they are going through and what I can expect. Janicecosgrove@earthlink.net
Melanie G's June 29 reply to Ron's June 21, 2004 - Hi everyone, Because of the number of posts regarding antibiotics and dental work, I thought I would include a quote from a recent issue of the medical journal Circulation. They say no on the antibiotics before treatment: Circulation 2003;108:1822-1830) dated Oct. 21, 2003. "The American Heart Association recommends that patients with most cardiovascular devices do not need antibiotic prophylaxis before dental procedures. However, when an infection occurs in an implanted device (ICD, pacemaker, or the lead) it is both rare and severe. The presenting signs are those of local or systemic infection. The recommendations are against secondary prophylaxis for nonvalvular devices. Unlike patients with prosthetic heart valves, these patients should not undergo routine antibiotic treatment prior to dental, respiratory, gastrointestinal or genitourinary procedures."
I think that if your dentist recommends it for you, it probably won't do much harm. If the dentist doesn't want to use antibiotics ahead of time, I wouldn't worry, because the latest guidelines say it isn't necessary or recommended. firstname.lastname@example.org
Jon's note: For what it's worth, I disagree with the guidelines, and so does my dentist. I take antibiotics before all dental work. I have no serious valve problems or devices, just an enlarged heart.
Clara D, June 29, 2004 - Hi Everyone, I used to experience a lot of sinus congestion and pain, especially after working in the garden with my head down. After being diagnosed with DCM and started on CoQ10, Coreg, and Diovan and keeping to a very low sodium diet (500 to 700mg per day), I noticed that I had fewer sinus problems and none at all so far this year. That is, until last week, when I fell off the wagon and had at least 2000mg of sodium per day for 2 days in a row. The congestion, pain and puffy eyes were back. I also gained about 5 pounds. It has taken several days of limiting myself to 300 to 500mg sodium per day to begin to feel good again and to drop the extra pounds. If I had ever connected my sodium intake with my sinus problem, I would have happily gone on a low sodium diet years ago!
Has anyone else experienced anything like this? Clara D. email@example.com
Carla's June 29 reply to Scott B's June 28, 2004 - Hi Scott and Jon, Thanks for your responses and concern. I "feel" great. Again, I probably would have never felt bad until they told me I did! The main thing I notice here in central Texas is the humidity. When it's up, I feel very fatigued but otherwise my life hasn't changed at all. I still pretty much eat what I want, in moderation, of course. I still work out in the yard, mowing grass and washing the car. I still work my full-time, high-stress job.
I think I'm just still hung up on the "numbers" because I would still like to try to have a child someday and it seems like time is running out for that. I have a very hardcore cariologist who won't even discuss it with me! I know, I know, I should be thankful that I get to grow old with my new husband, and enjoy my life with all its blessings! Thanks for this site and your friendship! firstname.lastname@example.org
Greta's June 29 reply to Janice's June 28, 2004 - Hi Janice, Welcome! I am surprised Jon didn't tack a note onto your post telling you to read The Manual. That is the best place to start. There is a lot of info that really helps a lot. As for exercise, do the best you can. You don't say if you work or if you are a housewife. If you work, finding time to exercise will take some time management on your part. If you stay at home, work out a schedule that fits you best.
I am 57 years of age and was diagnosed with CHF in March of 2003. At that time my EF was 20%, and now it is 35%. The tiredness, which I can relate to, is probably a result of not only your decreased heart function, but also your medications. I can relate also to the depression. If it gets too bad, discuss with your doctor an antidepressant to help you.
You are not alone and everyone who posts to or reads this message board has, or is going through, the same thing. We understand. It can and will get better. Hang in there. Blessings, Greta. email@example.com
Roz, June 29, 2004 - Hi, I am writing to ask if any other CHFers have used the drug Provigil (modafinil). It was developed as a central nervous system stimulant to treat narcolepsy but my cardiologist prescribed it for the extreme fatigue that seems to haunt most of us with CHF. I have used it for less than 2 weeks and find it extremely helpful, both increasing energy and lifting spirits. I cannot find journal articles about its use in cardiology however, and need reassurance about its safety. Any anecdotal reports or references in the literature will be received with boundless appreciation! Roz. firstname.lastname@example.org
Jon's June 29 reply to Roz' June 29, 2004 - Hi Roz, Awhile back I steered readers to a site with a questionnaire for heart failure patients about heart failure and fatigue or sleepiness. The questionnaire was done by Dr. Jonathan Sackner-Bernstein. A drug used for treating sleepiness in patients with narcolepsy may be one answer. The ideal patient would probably be a heart failure patient who gets sleepy or tired as the day progresses, and when the person also notices difficulty concentrating or reading.
If the above information doesn't point you to anything useful, let me know and I'll check into it further. Jon.
Lisa, June 29, 2004 - Hi everyone, I don't know if any of you will benefit from the following information, but I thought I would share. Some history: My dad, age 74, has DCM, CHF, high blood pressure, type 2 diabetes, arthritis, and has battled a bladder-kidney infection for the past 2 years. His EF is around 18%. He has had a Guidant ICD since January of 2001 when he was in cardiac arrest twice. In September of 2002 he suffered a small stroke (hemorrhagic) due to missing his Coumadin for 3 consecutive days. In February of 2003, he had a trans-urethral resection of the prostate (TURP), and in February of 2004 he had a TEE and cardioversion.
All in all, through all of that he has done remarkably well. However, one of the toughest battles we have had is this bladder-kidney infection. It was labeled Candida Albicans, a form of a yeast infection, and made him feel like he had been run over by a Mack truck. After numerous antibiotics, which gave him many unpleasant side effects, and a lot of diagnostic testing, we were beginning to think nothing could ever eradicate the infection!
I started doing a ton of research and came across a product called Three-lac (ww.123candida.com). My father has been taking it for a little over a month and for the first time in 2 years, he is candida-free! We are so excited. If anyone out there has suffered from something similar, I hope this product works for you.
His physicians read all the materials and are amazed that this is working! Finally, he has a "little" bit of energy and his eyes are clear, and most importantly he feels a little better. We still have all the CHF stuff to deal with on a daily basis, but may have possibly found a solution to one of his problems.
I just thought I would share because this site has always been so helpful to me, and I know how many problems and illnesses can crop up in CHFers! Thanks again Jon, for your tremendous devotion. Stay well. email@example.com
Janet H, June 29, 2004 - Hi, Does anyone know how much Coreg and Toprol-XL raise your blood sugar? Is there a beta-blocker that doesn't? firstname.lastname@example.org
Valerie R's June 29 reply to Carla's June 23, 2004 - Hi, I was diagnosed in 1995 with an EF from 15 to 20%. I taught school for 7 years after that but am now retired. I now have an EF between 10 and 20%, depending who looks at it. I don't think any 3 doctors agree when it comes to this, although a heart cath in May of 2003 showed 10%.
I did have some decompensation for awhile in 2002, but I usually don't know I'm sick. I always thought I was really well and people who diagnosed me were wrong, but when I decompensated and ended up in the hospital, my doc wanted me to go in for a heart transplant evaluation. That scared me into real low sodium eating and retiring after 35 years teaching!
Except for the decompensation that one school year, I am back to feeling great even though I qualify for heart transplant. Because of this, I am marked "inactive" on the transplant list and hope it stays that way! Low sodium, meds on time, exercise, and good thoughts. email@example.com
Jon, June 29, 2004 - Hi everyone, Here's that pesky quote for the day: "An occasional lucky guess as to what makes a wife tick is the best a man can hope for. Even then, no sooner has he learned how to cope with the tick than she tocks." Ogden Nash. Jon.
Jon, June 30, 2004 - Howdy-doo all, The daily quote is: "Money is better than poverty, if only for financial reasons." Woody Allen. Jon.
Donna H's June 30 reply to Jon's June 15, 2004 - Hi Jon, After reading your reply to my last post, I contacted my husband's primary care physcian. She sent him on to a different hospital and he saw the same group of doctors that you see. He was discharged yesterday after 11 days in Club Med. During that time, they did extensive testing. His discharge papers say that he was class 4 on admission. He was treated for jaundice and pneumonia in addition to his decompensated heart failure. IV antibiotics were given during his stay and with an increased diuretic dose, he finally got over his persistant nausea and is feeling weak but better.
Since he was discharged from the first hospital less than a week before being admitted into this one, we requested that the doctors from the second hospital talk with the doctors at the first hospital. They not only agreed but also recommended that he be upgraded to a biventricular pacemaker as an option to make him feel better or as a bridge until he can be considered for transplant. The doctors also think that he is a good candidate for ablation so that he would be 100% pacemaker dependant and it would make him feel better. Friday we meet with the other cardiologists about transplant evaluation and to discuss other options.
Thanks Jon, for that little push to go to another doctor. You may have saved his life! So often we don't question enough, even though it is our loved ones lives that are at stake! firstname.lastname@example.org
Margaret D's June 30 reply to Roz' June 29, 2004 - Hi Roz, I looked up the drug in my nurse's drug book. It states that the drug is to be used with caution in patients with left ventricular hypertrophy, ischemic EKG changes, chest pain, arrhythmias, hypertension, and some other unrelated conditions. Since your cardiologist ordered it, there may be new information since my book was written in 2001. There also may be interactions with warfarin. I double checked the name of the drug in case I read it wrong. On the other hand, if it works then maybe it's exactly what you need! I'm just telling you what I have read. As always, consult your doctor. email@example.com
Jon's note: www.chfpatients.com/links.htm#rxd is a good place to find drug info links.
Scott Brown's June 30 reply to Clara D's June 29, 2004 - Hi Clara, I assume you are on diuretics. By weighing yourself daily, the duiretics should help to remove the sodium from your body (not to mention all the fluid that comes with it). Everyone has different sodium intake restrictions. Your intake is extremely low. It makes me think you are not taking diuretics at all. I don't think your weight should be going up 5 pounds based on fluid retention. My diuretic intake is based on my weight gain. It is not perfect because it assumes all weight gain and loss is from changes in fluid retention. Scott Brown. firstname.lastname@example.org
Ruthie A's June 30 reply to Roz' June 29, 2004 - Hi Roz, I assume you have checked out www.rxlist.com and have "done a Google" on Provigil. When I "Googled" it, I found several pertinent articles, including an interesting anecdote (a couple of questionable words and all). This anecdotal article also had a link at the bottom of the page to a site where users can rate Provigil according to their experience and make comments.
What struck me in my reading were 2 things: First, there appears to be no explanation for how or why Provigil works. That has always set red lights off in my thinking and one of the many reasons I prefer not to take aspirin. Second, I kept running across warnings about mitral valve prolapse, left ventricular hypertrophy, chest pain, angina, arrhythmia, and so forth. There always seems to be a caution placed on certain cardiac situations, and it is recommended that you discuss it thoroughly with your doctor first if you have those problems.
However, in your case, your doctor is the one bringing the medication to the forefront, but you still may want to discuss your concerns with him if you have any. May I also suggest that you talk with your pharmacist about Provigil? He may have some knowledge of drug interactions or cautions concerning taking it with all your other medications.
Never having heard of Provigil before makes it difficult for me to comment, except that if my doctor had prescribed it for me and I did all this reading first, I would not take it until we talked it over carefully. It never hurts to wait a few days to fill a prescription (unless it's absolutely necessary, such as antibiotics, certain cardiac meds, etc.) until you have done your homework. I always at least ask my doctor and pharmacist about side effects and drug interactions with all the other meds I'm taking.
If this medication is something you and your doctor think is for you, then I wish you the best and hope it does what you want it to do. Ruthie A. ;-) email@example.com
Gatha, June 30, 2004 - Hey Jon, Here is a new one that people with diabetes should be warned about. My feet hurt and sometimes feel numb from diabetes over the years. I have heard this many times on this forum from other people. Four weeks ago, I just thought my legs and feet were a litle worse than usual. The numbness was up in my thigh and hip also so I mentioned this to my doctor and he sent me for an MRI which showed 2 bulging discs at lower L4 and L5, and a cyst pressing on the nerve down the back of my left leg. I go to the back doctor Friday.
If anyone has any unusual pain that hasn't been there before, make an appointment and get it checked out. Dumb me, I never connected this pain and numbness with my back. Take care, you are doing a really great job informing us. firstname.lastname@example.org
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.