The paperwork never ends The Archives
December 16-31, 2003 Archive Index CHFpatients.com

Kate's 12-16 reply to Laurie's 12-12     kicking the habit
 
Peggy's 12-16 reply to Laurie's 12-12     kicking the habit
 
Robert 12-16     seek Natrecor experiences
 
Nancy's 12-16 reply to Laurie's 12-12     kicking the habit
 
Pat R's 12-16 reply to Carrie's 12-5     how do they do an exercise echo?
 
Michelle A 12-16     seek ideas fighting thirst
 
Laurie P 12-16     seek cath experiences
 
Gregg 12-16     Disability review experience
 
Sandra 12-16     what am I allergic to in these meds?
 
Jon's 12-16 reply to Sandra's 12-16     be sure you are
 
Anne 12-16     seek others sensitive to CHF drugs
 
Mary Lou L's 12-16 reply to Jim's 12-12     condolences
 
Bob's 12-16 reply to Laurie's 12-12     kicking the habit
 
Cathy 12-17     ablation, EPS questions
 
Margaret D's 12-17 reply to Michelle A's 12-16     try a second opinion
 
Curt 12-17     what is a T-wave test?
 
Tom S' 12-17 reply to Laurie P's 12-16     cath experience & more
 
Jon's 12-17 reply to Tom S' 12-17     linking to reader experiences
 
James 12-17     good news update after pacer implant
 
Thelma 12-17     can antibiotics worsen edema?
 
Ingrid 12-17     kicking the habit
 
Peggy's 12-16 reply to Laurie P's 12-16     cath experience
 
Kate's 12-17 reply to Michelle A's 12-16     coping with dry mouth
 
Pam's 12-17 reply to Michelle A's 12-16     one possibility
 
Margaret D 12-19     T-wave alternans test
 
Michael C 12-19     seek people awaiting transplant
 
Roger H 12-19     happy holidays
 
Myrtle C's 12-19 reply to Pat W's 12-12     meds for depression
 
Lane C's 12-19 reply to Laurie P's 12-16     cath experience
 
Sharon L's 12-20 reply to Laurie P's 12-16     cath experience
 
Steve P 12-20     should I wait or not?
 
Jon's 12-20 reply to Steve P's 12-20     tough decision
 
Michelle A 12-20     coping with heart failure
 
Valerie R 12-20     what does grapefruit interact with?
 
Pat W R's 12-20 reply to Myrtle C's 12-19     also what dose do I take of supplements?
 
Vivian's 12-22 reply to Michelle A's 12-20     mouth moisturizing gel
 
Paul D's 12-22 reply to Michelle A's 12-20     mouth moisturizing gel
 
Kate 12-22     book series suggestion
 
Jon's 12-22 reply to Kate's 12-22     a good suggestion
 
Clara D's 12-22 reply to Pat W R's 12-20     CoQ10 experience
 
Hal 12-22     what do you take for a cold?
 
Reginald 12-22     does anyone take CoQ10?
 
George S' 12-22 reply to Cathy's 12-17     EP test, EPS
 
Pam 12-22     update
 
Ruthie A 12-23     diastolic and systolic dysfunction
 
David 12-23     hoping all are coping well
 
Rita 12-23     seek right heart cath & amyloidosis experiences
 
Kate's 12-23 reply to Cathy's 12-17     EPS experience
 
Pat W R 12-23     seek growth hormone experiences
 
Valerie R's 12-23 reply to Jon's 12-22     writing a book
 
Jon's 12-23 reply to Valerie R's 12-23     writing a book
 
Lane C's 12-23 reply to Valerie R's 12-20     grapefruit juice and more
 
Jon 12-25     extra heart info
 
Norma 12-25     CoQ10 experience
 
Valerie R's 12-25 reply to Lane C's 12-23     thank you
 
Pam's 12-25 reply to Valerie R's 12-20     other resources
 
Jacky's 12-25 reply to Pat W R's 12-23     human growth hormone trial
 
Tom S 12-25     season's greetings
 
Lisa 12-25     seek experiences with colds & flu
 
Pam 12-25     bathroom scales making me nuts
 
Pat W R's 12-26 reply to Lisa's 12-25     colds with heart failure
 
Pat W R's 12-26 reply to Pam's 12-25     bathroom scales
 
Jon 12-29     thanks to donors
 
Valerie R 12-29     low sodium cooking
 
Lisa's 12-29 reply to Pat's 12-26     thanks & more
 
Pam 12-29     seek advice on tingling
 
Jim B 12-29     seek Ticket To Work experiences
 
Nancy Hart 12-29     seek advice for my son
 
James 12-29     seek experiences with L-Carnitine
 
Jon's 12-29 reply to James' 12-29     PLC
 
Kathy 12-29     stomach edema questions
 
Jon's 12-29 reply to Kathy's 12-29     stomach edema
 
Pat 12-29     knee questions
 
Jon's 12-29 reply to Pat's 12-29     current knee situation
 
Margaret D's 12-29 reply to Pam's 12-29     tingling & numbness
 
Bonnie 12-29     need some quick advice
 
Lydia Moore 12-29     what can I take for stuffy nose?
 
Jon's 12-29 reply to Lydia Moore's 12-29     stuffy nose remedies
 
Curt's 12-29 reply to James' 12-29     carnitine confusion
 
Jon's 12-29 reply to Curt's 12-29     carnitine confusion
 
Joseph P 12-30     glucosamine for joint pain
 
James' 12-30 reply to Curt's 12-29     L-carnitine confusion
 
James' 12-30 reply to Lydia Moore's 12-29     dealing with stuffy nose
 
Nancy 12-30     seek ICD/pacemaker experiences
 
David Wilson 12-30     how can I raise my blood pressure?
 
Pat W R 12-30     seek advice on supplements
 
Craig B 12-30     hospital experience & advice
 
Joanne R's 12-30 reply to Pam's 12-29     tingling in hands
 
Pat W R's 12-30 reply to Lydia Moore's 12-29     possible option
 


Kate's December 16 reply to Laurie's December 12, 2003 - Dear Laurie, Here is an image of addiction that I've shared with others who have told me it is powerful and has helped them. Imagine a 33 year old woman, gray in palor, bald and devoid of energy. She has been vomiting non-stop for days but has stopped as her white blood cells begin to climb. Because her central nervous system has become accustomed to constant vomiting, she continues to have dry heaves for days after the chemo has ended.
     Once ambulatory, she drags her IV machine, because numerous meds are still being given intravenously, to the lounge and lights up a cigarette. In between dry heaves, gagging and coughing, she puffs away. Becoming more sick with every drag, she nonetheless continues to puff and gag and convulse with dry heaves.
     I lived it and it was every bit as horrible as it reads. When I realized the leukemia I was fighting was not going to kill me, I ran out of excuses and I quit a 4 pack a day habit and never looked back. It was so significant a day that I can even remember what I was wearing when I threw the pack in the garbage.
     I cannot express the overwhelming joy that comes with finally having said goodbye to your best "friend." The government should give out medals. It is a tough, hard won battle. I chewed the nicotine gum, my husband wore the patch and we were both successful. Think of my story and don't let that piece of paper filled with dead leaves and dead bugs be the master of you. Let us know how you are doing. Kate. tothymecottage@frontiernet.net


Peggy's December 16 reply to Laurie's December 12, 2003 - Hi Laurie, I just quit smoking myself back on September 4. I got lucky. My job offered a stop-smoking class from the American Lung Association, including the time off to go. After trying so many times on my own to just quit, and climbing the walls to do it, this finally worked.
     You have to plan to quit. Identify what time(s) of day you really need a cigarette and plan ahead of time what you will do instead. Just remember one very important thing: The urge to smoke will pass whether you smoke or not! Also, taking a deep breath or 2 or 3 helps. It's like fooling your lungs that you're taking that drag. Toothpicks and (don't laugh) a pacifier help too. That pacifier was in my mouth when I went to bed (reading of course) till I fell asleep.
     To combat the nasties, get a relaxation tape. This helps a great deal but do not listen to it in the car. I don't use it anymore, so if you like, e-mail me your address (or we can go through Jon if he is willing) and I can stick it in the mail. Or you can try the American Lung Association and see if they will send you a tape, or maybe the whole program. Good luck! Our condition is a great incentive also. Always keep that in the back of your mind too! pferro1@bellsouth.net


Robert, December 16, 2003 - Hello, Has anyone had experience with Natrecor? I'm told 3 days in the hospital CCU while the drip is working. I have PTSD bad and I don't think I can just lay in CCU for 3 days. I wish I could. Has anyone had this or know about it? Thank you. hawkdog86@aol.com


Nancy's December 16 reply to Laurie's December 12, 2003 - Hi Lauri, I quit smoking the first time in 1984 and started back in 1999. I smoked for about a year doing everything in my power to stop from when I first started back. I tried the gum, patches, cold turkey, but nothing helped. Then I went to the doctor with a cough that wouldn't get better. He wasn't my regular one but one in the same clinic with my PCP. He told me that I had the beginning stages of emphysema.
     I had just watched my grandpa be buried after suffering for many, many years from that disease. It wasn't very hard after that to ask the Lord once again to help me to quit. He did and within a week I stopped. When you see someone suffer like that, it makes you have a much stronger will. Maybe you should picture yourself drowning, which is what will happen to you if you continue to smoke. It may happen anyway but for sure it will be much sooner if you don't stop.
     I wish you the very best and I will say a prayer for you to be able to overcome this addiction. Good luck (it turned out that I had CHF instead!). Nancy. ns1@alltel.net


Pat R's December 16 reply to Carrie's December 5, 2003 - Hi Carrie, Just a question: How do they do the echo while you are exercising? When I get an echo they tell me to stay still and sometimes hold my breath. Like you, I am fine at rest but when doing something, I sound like a steam engine. prothlauf@aol.com


Michelle A, December 16, 2003 - Hello everyone, My Lasix dose keeps going up because I'm still having lots of fluid problems, which started last summer. Right now I'm taking 160mg in the morning and 80mg in the afternoon. Thanks to this board, I know to take Lasix on an empty stomach and that helps a lot.
     My problem is that I'm very thirsty all the time and I'm having a hard time drinking less than 2 liters a day. The less I drink the better I feel, but I don't know how to deal with being this thirsty all the time. I feel dehydrated but my abdomen is distended, my feet and legs are swollen, and my liver is enlarged from all the fluid. I'm doing very well on my low sodium diet, and I'm currently waiting to hear if my insurance company will cover a visit to a nutritionist.
     In the meantime, does anyone have any ideas on how to deal with extreme thirst? Thanks! mianders@hotmail.com


Laurie P, December 16, 2003 - Hi, It's me again. I was just wondering if any of you have had a cardiac catheterization before and how long did it take you to feel better from it? What symptoms did you experience after having it done? Thanks for all your help, Laurie. lrp3lmp@aol.com


Gregg, December 16, 2003 - Hello Jon, I've been on SSD for over 4 years with DCM, CHF, diabetes, and neuropathy in hands and eye. Back in March of this year I was told to fill out more information regarding my conditions to SSA for my 3-year review, that was a year late. In July I received a letter from SSA telling me I was no longer disabled and would be removed from SSD by the end of the month.
     Like others, my EF was back to normal but feeling constant fatigue from medications, I felt I needed to start looking for work while at the same time filing an appeal or request for reconsideration. While looking for work (with no success) and feeling physically bad, I had my primary doctor run many tests on me to find the problem, to no avail. I had my doctor write a letter about my condition in detail, which I submitted with the other medical information through the proper channels of SSA.
     In November I received a letter from SSA telling me that a hearing was set up for me the first week in December and that the hearing would take a few hours. When my wife and I arrived we had 45 minutes to review their file on me and I noticed right away that the letter my doctor wrote just weeks earlier was absent from the file. When we asked about the letter, the independent judge looked for the letter and found it in the wrong place of my file. It was never looked over by SSA staff.
     The judge then grated my continuation of benefits and the whole process took all of 10 minutes. Just food for thought for those of you going through the process as well. Gregg. fishel@comcast.net


Sandra, December 16, 2003 - Hi, I'm getting hives from Prinivil, Coreg, Aldactone, Toprol, and Lopressor. What's left to take, and what's in these things that I'm allergic to? What is in these things that is so bad and is there anything left to take? twogears@maxinter.net


Jon's December 16 reply to Sandra's December 16, 2003 - Hi Sandra, I don't know. Coreg, Toprol and Lopressor are all beta-blockers so they might all have the same effect. However, Aldactone and Prinivil both affect the RAS, and not in the same way. Not to sound too stupid, but how careful were your doctors to be certain the hives were from these specific medications. Did they do a drug challenge, one med at a time, with a wash-out period between each one? Jon.


Anne, December 16, 2003 - Hi, My biggest challenge appears that I am very sensitive to many of the drugs that are used for CHF. My system does not appear to metabolize many of them at normal rates so as I go up on the doses I get into trouble. I have tried several of them without success. Does anyone have some insight on this? Has anyone been able to stay on sub-therapeutic doses because of sensitivities and yet see some positive results? Thanks so much! HeartnHealing@aol.com
 
Jon's note: Trials show that lower-than-target dose Coreg provides benefit. Aldactone provides benefit at only 25mg per day.


Mary Lou L's December 16 reply to Jim's December 12, 2003 - Hi Jim, I am so sorry to hear of your dad's passing. Keep thoughts of the good things you and he did together, and he will always be right there with you, in your heart. It sounds as though you and he must have had a very good relationship. God bless you and yours. Mary Lou. MLBinks@aol.com


Bob S' December 16 reply to Laurie's December 12, 2003 - Hi Laurie, You're on the right track. I quit a 30-year, 2-pack per day habit which I enjoyed very much. I used Zyban and found it to be easy. Other medications may work just as well or better. Talk to your physician about your drug and research it. Why?
     I tried Zyban before and failed. The key was in its use. My PCP (greatest in the world) told me how to properly take Zyban: 1) pick a quit date, 2) start taking the drug two weeks before the date, 3) absolutely stop on the date. I haven't smoked since. Why?
     My motivation was that once I quit, life was so much better. I could sit through a movie at the cinema, my breath stayed fresh for some time, started doing Altoids - what a joy! I feel better about myself. Keep going. The rewards for completely stopping are wonderful! mydog@intercom.net


Cathy, December 17, 2003 - Hi, My arrhythmias have been fleeting and intermittent, and I have had a heck of a time catching them on the event monitor. My cardiologist said that I will have to have cardiac ablation, but that they must first find out where the faulty electric signals are coming from. I'm to see an electrophysiologist early next week and was wondering if anyone can give me input about EP testing. Thanks, Cat. lafsalot2000@yahoo.com


Margaret D's December 17 reply to Michelle A's December 16, 2003 - Hi Michelle, I am concerned about your continuing problem with edema. Are you seeing a CHF specialist? Are you weighing yourself faithfully every single day? Sometimes edema increases so much in the stomach lining that diuretic meds aren't absorbed in the stomach and you need an IV diuretic. How low a sodium diet are you following? How strictly are you following it?
     I don't think that extreme thirst is a good sign. You may need some adjustments of your meds or a switch to another one. When I was diagnosed with CHF, I was very thirsty all the time like you describe. I felt like I was in a desert, and with an enlarged liver, etc.
     I would suspect that your CHF still needs to be brought under control. Consider a second opinion. mdavis10@tampabay.rr.com


Curt, December 17, 2003 - Hi, It's a great day in CHF land and I hope everyone is good. Just a quick question: What is a T-Wave test? What will I learn from it? Thanks. curtishammock@juno.com


Tom S' December 17 reply to Laurie P's December 16, 2003 - Hi, It's a shame there isn't some way Jon could reference past posts dealing with this and several other subjects that continually are a source of inquiry by new and welcome members of the CHF community. I know I have personally written at least one long account of my catheterization experience, as have others.
     To boil it down, I would have to say, except for the vise grip-type gizmo applied to the catheter's entry area, having a heart catheterization was less annoying than most dental procedures, including cleaning. I hope that helps. bigheart@muchomail.com


Jon's December 17 reply to Tom S' December 17, 2003 - Howdy-doo Tom, Yeah, the old web site can't stand too many more long pages or nobody will read it! <g> However, if anyone wants posts on a specific topic listed in one spot, I can do that. You track them down (the site search engine and using the find function of your browser on each page returned in the search will help) and send me the exact urls. I'll list them under a heading at chfpatients.com/archives/archives_search.htm, with the other topics there. Jon.


James, December 17, 2003 - Hi, On 10/31/2003, I upgraded my "system" to include a brand spanking new biventricular pacemaker with built-in defibrillator (ICD). This was the next step in treating my CHF, due to my LBBB and other factors such as not responding well enough to meds and CPAP. My cardiologist felt this treatment would yield positive results. The electrocardiologist disagreed, suggesting we increase dosages and try a while longer. Then he ran a T-wave Alternans and decided he would very much like to get a defibrillator in me, so he agreed to go the full gambit.
     The surgery was relatively uneventful and the recovery reasonably smooth. One down side of the recovery was that I was pretty much a couch potato. I couldn't do much without a goodly amount of pain and since I was catering to my left side,..., well, let's just say I couldn't really do much but sit and watch TV, not that anyone would let me anyway. I ended up gaining about 15 pounds.
     At the 12-day mark, I had my follow-up visit with the electrocardiologist's office. This consisted of taking off the steri-strips (very painful - next time I'll tell them to leave them on and I'll do it myself) and querying the device to make sure all was well. I did not see the doctor. All looked good so they scheduled my next appointment for the end of February (yup, about 4 months down the line).
     Yesterday, I had my first appointment with my cardiologist since the implant. We started with an echo to measure heart size and function. Previous echoes showed the heart enlarged, although it appeared to stabilize back in May/June at about 6.3cm or so. My last ejection fraction (EF) came in at about 20% to 25% in mid-August.
     This latest visit showed no noticeable change in the size of my heart. It did, however, show a significant change in EF. They are now estimating my EF to be 30% to 35%. I also dropped the 15 pounds I'd gained while convalescing. I go back again in mid-April of next year.
     My next step is regular exercise, diet, and additional weight loss. My cardiologist expects my EF to continue to improve. This was the first positive news we've had since we began this roller coaster ride and it's a good Christmas present. I just thought I'd pass along a little good news and show there's still hope! James. jnj@spamcop.net


Thelma, December 17, 2003 - Hi, Can antibiotics worsen edema? Thanks for any help. Thelma. trowell@carolina.rr.com


Ingrid, December 17, 2003 - Hi, I had a very serious MI in 1999. Boy, is that one quick way to get you to give up smoking?! ingrid.godfrey2@ntlworld.com


Peggy's December 17 reply to Laurie P's December 16, 2003 - Hi Laurie, I had my catheterization in October. It's not the most comfortable procedure to go through (the initial sticking for the anesthesia). Once you're numb, you shouldn't feel a thing and you can watch on the television screen what the doctor is seeing.
     It was sore for a couple of days but there were no lingering after effects. Just remember one thing: You have to keep your leg absolutely still to let a good blood clot form after the procedure. Otherwise, like me, you will wind up with an arterial bleed! Good thing someone peeked under my blanket because I had moved my leg slightly transferring to the gurney to go to recovery. It did turn out well, with no blockages for me.
     You're not supposed to go to work the next day either. Good luck. PFerro1@bellsouth.net


Kate's December 17 reply to Michelle A's December 16, 2003 - Dear Michelle, My mom had a similar problem. A nurse told her first to apply a chapstick-type product to her lips to keep them moist and then occasionally just chew a few ice chips. This moistens the inside of your mouth and can take the edge off of the really thirsty feeling. It kind of fools the brain a bit. I hope this helps. Kate. tothymecottage@frontiernet.net


Pam's December 17 reply to Michelle A's December 16, 2003 - Hi Michelle, I used to be thirsty all the time too, before I started taking spironolactone. Has your doctor put you on Aldactone (spironolactone) or eplerenone (Inspra)? If your excessive thirst is caused by an increase in aldosterone (which sometimes happens as a result of heart failure), one of these drugs can curb the aldosterone and tame your thirst. Best of health! Hugs, Pam. spirlhelix@yahoo.com


Margaret D, December 19, 2003 - Hi Curt, A T-wave alternans is a simple test that can help determine if you need an internal cardiac defibrillator (ICD). Jon had a mailing on it recently. The results are listed as either positive, negative or indeterminate. I had 2 indeterminants. You get hooked up like an EKG and get on the treadmill for a short time. They exercise you until your heart rate reaches a set rate, like 110. I forget the actual rate. It is perfectly painless and easy! mdavis10@tampabay.rr.com


Michael C, December 19, 2003 - Hi, My name is Michael. I am 28 years old and I was recently placed on a heart transplant waiting list. I would like to talk with anyone who is also waiting or who has already had a heart transplant. I have read countless articles and watched videos, but there is nothing better than talking to someone in real time. On instant messenger on Yahoo, I am MIke_c075. Thank you.
     PS. This site is very informative. I am glad I found it. mike075@hotmail.com


Roger H, December 19, 2003 - Hi, I am taking a vacation until the first of the year and want to wish all a merry Christmas! rjhughs@juno.com


Myrtle C's December 19 reply to Pat W's December 12, 2003 - Hi Pat, I disagree with you about getting help for depression from meds. Long-term depression may be improved by medical help. Sometimes, hearing people say not to dwell on it can actually cause frustration. God be with us all, Myrtle C. omieof3@yahoo.com


Lane C's December 19 reply to Laurie P's December 16, 2003 - Hi, To be honest with you, the hardest thing was lying down for so long after the procedure, in my view. The drugs they gave me were better than I had been told. So it was not much of an experience. There was some tenderness but that went away in about a week or two. I can remember going in the room for the procedure and them prepping the area, but next I was in my room transferring to my bed and getting a sand bag on my groin to allow clotting. I hope it settles your fear or apprehension of the upcoming event. Good luck! fastlanedelivery@flash.net


Sharon L's December 20 reply to Laurie P's December 16, 2003 - Hi, I was very scared to have a cardiac cath. My cardiologist suggested it in January and I finally had it in March after he urged my family physician to convince me to do it. I fretted a lot and worried, until one of my co-workers told me he had had 3 caths and they were "low key."
     After that I agreed to have it on a Monday, signed the consent, and was in the hospital the next Monday before I could talk myself out of it. Because I have had a bad reaction to dyes before, the cardiologist gave me prednisone in case I reacted. They gave me Ativan and Benadryl to make me drowsy and away we went to the cath lab.
     I was out in 45 minutes and he actually stopped the procedure because my arteries were all clear after he took all kinds of readings. I did have a bit of a bleed, probably from transferring from the stretcher to the bed, and didn't know I was doing it until the nurses freaked. I had quite a bruise. I took 2 days off work and went back. It told the doctor a lot and wasn't too bad, although I'm not in a hurry to have another one soon. The cath lab was a bit cold. lyons@sasktel.net


Steve P, December 20, 2003 - Hi, I'm back! Jon, I'm beginning to wonder if my doctor knows what he's doing. I was diagnosed in early September with CHF and an EF of 20 to 25%. He put me on Coreg, furosemide, spironolactone, and Altace. I tried to return to work, but the fatigue and other effects of the drugs made it impossible.
     This week I had another echo and apparently I have not responded to the therapy. My EF is now 15 to 20%. He has added Lanoxin and a form of Trental to my drugs. What is your knowledge of these drugs? If I do not show any improvement I will be evaluated for a transplant. This seems too early for this type of action. Should I seek a second opinion? I have been advised to apply for SSD. shpdwcopa@msn.com


Jon's December 20 reply to Steve P's December 20, 2003 - Hi Steve, I think everyone should get a second opinion when there is any question about their treatment; and I would never consider heart transplant without a second opinion. I don't know what your drug doses currently are, what caused your heart failure, or if you have any other health problems. These all play into whether or not to let the meds work a while longer. Also, have you had a Vo2max test? See chfpatients.com/meds_old.htm#digoxin (Lanoxin) for Lanoxin information and see rxlist.com/cgi/generic/pentox_cp.htm for Trental information. Jon.


Michelle A, December 20, 2003 - Hi, Thanks for the replies about coping with a dry mouth and thirst. I do not have a CHF specialist because I have a severe form of congenital heart disease. I have a specialist in adult congenital heart disease though, who is wonderful. I will be talking to her about my dry mouth.
     I am not on spironolactone, only Lasix. I have tried chapstick and ice chips, and that really works. I also talked to my pharmacist, who recommended a mouth spray. I have not tried it yet because I'd have to spit the spray out and it's not convenient for me. I'm in college and I can't leave class to spit out my mouth spray all the time. Oral presentations have become difficult because of my dry mouth and if I sip water, which helps, I'm tempted to drink it all in one gulp. Fortunately, my professers all know about my condition, so my grades aren't affected by my speaking skills.
     I am doing very well on my low sodium diet, and I am proud of myself because I love salt. I am surprised at how good low salt food tastes and I have discovered lots of flavorings I never used before, like garlic and herbs. I haven't used salt in cooking for almost a year and I always cook with low sodium foods, like no-salt-added tomato sauce.
     My doctor thinks we haven't found the right combination of meds yet, and that's why I'm having so many fluid problems. I'm still waiting to hear if my insurance will cover a visit to a nutritionist. I'm working hard to keep everything under control, but CHF is a pain in the you-know-what. mianders@hotmail.com
 
Jon's note: Anyone who sticks to a low sodium diet should be proud - it's a hard one to make a habit!


Valerie R, December 20, 2003 - Hi, The same day I received 40 grapefruits from my mother-in-law for Christmas, I received a booklet from my insurance company about heart failure. I also get a call from a nurse once a month. Anyway, in the booklet it says that grapefruit juice interacts with many CHF meds. I have read this before somewhere. I guess I will not eat the grapefruit, but I am curious what the juice interacts with. So many meds interact with so many things, it seems.
     I am on Digitek, Lasix, Accupril, Toprol, Coumadin, spironalactone, amiodarone, multivitamin, magnesium, provachol, paxil, and Tums. Does anyone know anything about grapefruit? Merry Christmas and happy holidays, everyone! vgrogers@aol.com


Pat W R's December 20 reply to Myrtle C's December 19, 2003 - Hi Myrtle, Maybe I should clarify my response to Craig. I was sharing my personal experience. I am not a doctor. As we all know, what works for some may not work for others. I feel that if one person pulls something from my personal experiences and it helps them, it is well worth it to share with them. I am all for whatever helps a person, anti-depressants included. It's just that they are not what helped me.
     On a different note, I'd like to ask those who take taurine and L-carnitine - what dose do you take? There are clinical doses, preventative doses, therapeutic doses, then there are the doses on the bottles. My cardiologist okayed me to take them, but never indicated a dose. Any help would be greatly appreciated.
     To everyone on this wonderful web site, I'd just like to say hugs and thank you to all. Jon, you are indeed a very special person. I hope everyone has a blessed, safe and fun Christmas, and a very happy New Year! May God bless, Pat W.R. rollnright@cableone.net
 
Jon's note: For taurine, I recommend one gram 3 times a day.


Vivian's December 22 reply to Michelle A's December 20, 2003 - Hi, You might try a mouth moisturizing gel. Biotene makes one and there are other brands available. Best wishes! pender.grass@verizon.net


Paul D's December 22 reply to Michelle A's December 20, 2003 - Hi Michelle, For your dry mouth you may want to take a look at products from Biotene; see www.biotene.net/ . They make a dry mouth chewing gum that might help you get through classes. Also, their toothpaste is good for protecting your teeth, which can be at greater risk if your mouth is dry all the time. therealpauld@netscape.net


Kate, December 22, 2003 - Hi Jon, I am being serious about this: I think you should start a series of medical books starting with CHF for Dummies. You have the unique ability to stay just technical enough without confusing people. I, for one, would love to have some understandable textbooks on my bookshelf. So many times I want to know something that I know I've seen covered before and don't feel like rummaging through a large webs ite.
     I really wish you would consider it. I'm sure some doc would be happy to double check it for a percentage. Kate. tothymecottage@frontiernet.net


Jon's December 22 reply to Kate's December 22, 2003 - Hi Kate, I can't believe I am saying this, but that's a pretty appealing idea. If anyone is a publisher or knows one, drop me a line and maybe I can at least get an idea about what's really involved in such an endeavor.
     In the meantime, I am now setting up an FTP server for readers, but it will involve e-mailing me for a username and password to access the extra information. There will be no charge. Since I still have not found a commercial chat application I like, this is the next best way to move lots of information easily. Jon.


Clara D's December 22 reply to Pat W R's December 20, 2003 - Hi Pat, I have been taking CoQ10 for almost 2 years. I started with a small amount and gradually increased the dose to 150mg/day (50 mgs three times a day with meals which include fat in some form).
     It makes a big difference in how I feel. Even though my ejection fraction has been less than 15% for the last 2 years I have been able to maintain a very active life style, experience very little fatigue, and rarely even need a nap during the day. Maybe it's a placebo effect but for whatever reason, it works for me. I hope it works for you. Clara. ncdossetts@aol.com


Hal, December 22, 2003 - Hi, What do you do when you catch a cold? So many medications say not to take it if you have heart problems. This doesn't leave much. Also, one can't take aspirin when on anti-coagulants. So I am interested in knowing what others do. cwoest@sbcglobal.net
 
Jon's note: Ask your doctor first, but over-the-counter plain guaifenesin and plain Benadryl help me.


Reginald, December 22, 2003 - Hi, Have any of you all tried CoQ10? narinesingh@tstt.net.tt


George S' December 22 reply to Cathy's December 17, 2003 - Hi Cat, Responding to your question on EP testing, at St. Thomas' in Nashville, the procedure is rather straightforward. If your doc (CHF specialist or cardiologist) sees an actual or potential problem with the electrical system that governs your heart they will order an EPS.
     It's normally done as an all-in-one procedure. This means they run the test in the cath lab and if there is a problem then they go ahead right then and install the appropriate pacemaker/ICD. If you "pass" the test and no implant is needed to regulate your heart beat, then you can go home (with someone else driving) after about 2 hours in recovery.
     The type of device you have installed is totally dependent on the type of problem that occurs in your electrical firing of the heart. Some need only a pacemaker to help regulate the heart rate while others need a defibrillator (ICD) to shock your heart back into a normal rhythym. Some are given a device that does both.
     It's my understanding that while the doc may have a good idea of what type of electrical or heart beat problem you may be having, they must have the EP test results verify the problem before a specific device is selected and implanted. For general information on the EP test itself and how an implant works I would suggest going to WebMD and search for "EP Test" or "Implant" (both in the cardiology area). Also, try those search terms right here on Jon's site.
     If you need an implant, it is about the size of a small deck of cards (only thinner). It's implanted about 4 inches below your left collarbone by making a horizontal incision about 4 to 5 inches long. They put the implant under the skin and hook up the leads to your heart (where depends on the type of electrical issue they're dealing with.
     Pre-op and operative phase there should be zero pain since you are probably totally out of it. You have to stay in the hospital for 1 to 2 days for them to monitor your heart and ensure the device is working properly. Post-op you cannot lift anything over 5 lbs with your left hand and are pretty much restricted from a lot of physical activity for 2 weeks, except for walking, which is okay.
     You're not supposed to drive for 4 to 6 weeks but I was driving within a week with no problem. Some are extra sensitive to the touch where the implant was installed for at least a few weeks. Hugging hard is a bit painful, as is using the shoulder part of a seat belt. A towel or small pillow helps with the seat belt. This is all very temporary. The pain goes away on its own within a few weeks and unless you press directly where it's installed, you tend to forget it's even there.
     Please feel free to drop me a note directly if you have additional questions and I'll be glad to write or chat with you. George. georgeselin@comcast.net
 
Jon's note: Another possibility during EPS is an ablation.


Pam, December 22, 2003 - Hi all, I went to a CHF specialist for the first time today. She sees 100% CHF patients and works at a transplant center. She seems very good. She is trying me on Accupril, since a cough on ACE inhibitors seems more tolerable than beta-blockerss. Now my meds are: 360mg Diovan, 100mg Aldactone, 30mg Isosorbide, and 20mg Accupril.
     I've been noticing a few more symptoms lately, so she says I'm a class 2, stage C. It's nice to know I still have some ways to go before I'm a D. More news when I find out how I do on the Accupril. Hugs, Pam. spirlhelix@yahoo.com


Ruthie A, December 23, 2003 - Merry Christmas, everyone! I had an echo last Monday and got the results today. First I talked with the nurse practitioner who went over my CHF doc's report; then I started asking questions and she said I really needed to speak with the doctor because I was asking questions way over her head. :-) I was impressed when, after only 35 minutes of my calling her secretary, my doc called back! Imagine that!
     Anyway, it turns out that my left ventricle is enlarging. That means I am finally beginning to join most of you. It is possible that the enlargement and the extra work load is due to a leaky aortic valve. It's not bad enough to do anything about right now, but we are keeping watch on it. What was confusing was that my doctor does not see any evidence of diastolic dysfunction. She has read the reports from my other CHF doc, but the numbers and symptoms I presented with then are not there now. I don't understand.
     I will have hypertension and edema and sometimes shortness of breath. She is not convinced all these are from diastolic dysfunction. The good news is that the treatment is the same right now, no matter what is going on. That means I'm still stuck with all these meds.
     Jon, in all of your research have you ever come across any reference to diastolic dysfunction changing over to systolic? I know it's possible to have both at the same time, but can one become the other? Just what I needed - more questions. Oh well, I am still feeling pretty good, so I am thankful. Ruthie A. rlaba51@yahoo.com
 
Jon's note: It is not uncommon for dhf patients to develop shf, but I think it is a matter of changing degree or intensity, not an actual change from one to the other.


David, December 23, 2003 - Hi, I want to send loving greetings to all my friends on this board. I continue to remember you all. For some this will be a happy Christmas and for others there will be sadness and painful memories, but I have found that faith in the Lord Jesus alone enables me to cope with the joys and the tears.
     This is my second Christmas waiting for a new heart but God has been so good. I have gained so much from being a part of your lives and I pray I can continue to minister to others in 2004. www.2hearts.org.uk is open to any who wish to avail of its support.
     God bless you all and may you know true happiness through knowing Jesus this Christmas. David. david@2hearts.org.uk


Rita, December 23, 2003 - Hi, Has anybody here ever had the right sided cath to check for failure there? If so, how bad was it? I have both right and left-sided heart failure. I also wonder if I might have amyloidosis causing my heart failure. Does anyone here have that? velvetmusicandbooks@hotmail.com
 
Jon's note: I had a right heart cath through my jugular. It was about the same as the left heart cath through the groin although I asked for extra skin deadener at the neck site because I have a twitchy neck touch-wise.


Kate's December 23 reply to Cathy's December 17, 2003 - Hi, I sometimes feel like I am the only person in the universe who seems to get the worst reaction to everything. I went in for my EP test and was supposed to receive my ICD right afterward. Instead, after they had to revive me twice, I spiked a fever and was sent home the next day without a device. No one could figure out why I got a fever, but when I finally went in to get the ICD the nurse remembered me.
     I took pictures to show her the blisters I had everywhere they had anything attached to me during the EP test, even just adhesive patches. I asked if all the blisters could have something to do with the fever. She said, "Yes, they are all burns and you had so many they could quite possibly have caused the fever."
     So the experience is not a piece of cake for all of us. I hope you breeze through like most. Kate. tothymecottage@frontiernet.net


Pat W R, December 23, 2003 - Hi fellow CHFers, I just wanted to pose a quick question to all. Does anyone use HGH (human growth hormone)? I've been doing research on it and it seems to have some very beneficial heart function improvement capabilities. I wanted to ask you all for input, before I ask my cardiologist about it. Thanks and happy holidays! Pat W.R. rollnright@cableone.net


Valerie R's December 23 reply to Jon's December 22, 2003 - Hi Jon, I totally agree with Kate about writing a CHF book for dummies. You would do a fantastic job! I turned the nurse who checks on me monthly on to your site and now she uses it for others. She is a nurse for the insurance company and checking on policy holders is her job.
     I think I would go to the book store and write down the publishing company(s) for books like Computers for Dummies, etc. Then write each a letter, asking if they are interested. Often writers mail the first chapter, but you could simply refer them to the site, particularly "The Manual." Other than that, you can get an agent the same way.
     I wrote a long teaching unit on a very difficult novel and then wrote a company who publishes books and manuals on novels for teachers. They told me that if I wrote it to their format, they would be interested. However, I was always too busy!
     Really, you should do it! We'll all give you references and tips. Your chapters, organization, and index will be important, so the book is useful.You have helped so many, now get some reimbursement. vgrogers@aol.com


Jon's December 23 reply to Valerie R's December 23, 2003 - Hi, Time, energy and pain are current limiters for me. I would happily do the writing but that's it. I can't keep up the site and engage in all the footwork of getting a book deal together too. My knees don't currently allow me to do any travel, even locally.
     The best path to reimbursement is a corporate donation or grant, since CHFpatients.com, Inc., is a 501(3)(c) so all donations are tax deductible. I'd enjoy writing such books but I can't take my eyes off the site or it would simply be gone in a matter of months. Jon.


Lane C's December 23 reply to Valerie R's December 20, 2003 - Hi Valerie, I read about your question regarding grapefruit or the juice and reactions with medications. You can ask your pharmacist for one, but I do know they say to avoid large amounts if taking Lipitor. The hospital pharmacist I talked with told me it had to be an amount like a gallon a day or some hilariously large amount that most people wouldn't even get close to. If you were to eat one grapefruit a day, I don't think it would interfere but I'm not a doctor or pharmacist.
     They don't mind the questions. It's their job to be there for your education and safe use of medications. You can also go to Medline and see the precautions they tell you and it's in detail, so you can find out a ton of additional information. Walgreen's has a web site and will give you med-to-med interactions. For a small annual fee, you can subscribe to their hotline for ER or doctor information.
     I have a card that lists an 800 phone number for them to call for my meds and it has numbers for the doctor's office as well as my hospital of choice. Feel free to contact me at my e-mail address if you want to talk or need to vent. fastlanedelivery@flash.net


Jon, December 25, 2003 - Hi everyone, You can now access extra heart failure information at info.chfpatients.com. I haven't finished setting up FTP for readers, and this makes it available now. Jon.


Norma, December 25, 2003 - Hi, I am replying to two people who asked about CoQ10. I had congestive heart failure in 1997 and since then have been on CoQ10 as well as prescription medicines. I take 100mg in the morning, 30mg at noon and 100mg in the evening. I subscribe to several medical newsletters and I believe it was "Second Opinion" that recommended this dosage.
     Since I have been stable since that time, although the cardiologists never seem to admit that I am no longer class 4, I have to give a lot of credit to that and to Hawthorne. I do not get short of breath, can walk 1/2 mile easily and my life is not restricted in any way except that since I am retired, I can take it easy when I want to.
     When I tell the cardiologist how well I feel, they insist that it's only temporary because I cannot take Coreg and that is the only thing that would help me. They have now been telling me that for 3 or 4 years and I am still fine, and still here! Love and merry Christmas to everyone. Norma. normadroz@aol.com


Valerie R's December 25 reply to Lane C's December 23, 2003 - Thanks Lane, I will research it and I will ask the doc, but I rather expect what you were told is correct. If I thought it might be serious, I'd call the cardiologist but it's not important enough to spoil the holidays and I'll see him next month. I appreciate your response! If I learn anything else, I'll post. vgrogers@aol.com


Pam's December 25 reply to Valerie R's December 20, 2003 - Hi Valerie, Lane C gave some great suggestions for sources of information about drug interactions with foods. Another good source would be the national poision center hotline, at 1-800-222-1222. Sometimes I call them if I have questions about interactions between my meds. I learned this little trick because I have one doctor who calls them routinely to make sure the meds he prescribes will work with the ones I'm already on. As they say, better safe than sorry! Hugs, Pam. spirlhelix@yahoo.com


Jacky's December 25 reply to Pat W R's December 23, 2003 - Hi, I am in a clinical trial for use of HGH (human growth hormone) for idiopathic dilated cardiomyopathy - that is, if they get the funding. I have been through the preliminary testing and am definitely a candidate. It is slightly different from research done in the past. I believe HGH only is effective for dilated cardiomyopathy. Merry Christmas everyone! Jacky. jackymwb@earthlink.net


Tom S, December 25, 2003 - Hi, On the celebration of the birth of He who was to be called the Prince of Peace, let us put aside all our afflictions, pains and sorrows, and reflect on the true meaning of the season. A joyous Christmas to all and here is wishing you and yours a most happy and prosperous new year. bigheart@muchomail.com


Lisa, December 25, 2003 - Hi, I really need some advice and input on how others feel when they catch a cold or get the flu. I have only had one cold since being diagnosed with CHF in 2001. I just don't remember feeling this short of breath and my resting heart rate being this fast. How do others feel? Thanks for any advice. God bless, Lisa Elliott. Johnlisa@the-i.net


Pam, December 25, 2003 - Hi, I got a bathroom scale for Christmas! I've never had one before. The thing is, it's driving me nuts. It weighs me about 10 pounds lighter than the doctor's office scale does and it says I've gained 3 pounds since yesterday. That may be true because my weight is always up and down anyway. Drat! It's Christmas and now I have to figure out which doctor to call about a (presumed) 3-pound weight gain, which could be due to a faulty scale! Oh, well, life in the fast lane with CHF. I hope everyone has a great holiday. Hugs, Pam. spirlhelix@yahoo.com


Pat W R's December 26 reply to Lisa's December 25, 2003 - Hi Lisa, Personally I have found that colds and flu are definately a "stay away from." The two times I have had a cold, I felt absolutely miserable. It was just about as bad as being in CHF, with extreme fatigue, shortness of breath, and congestion that made me feel like I had an elephant on my chest. Before IDCM, a cold was just a small nuisance. I think the most important thing regarding colds and flu is the chance of getting pneumonia. That could be life threatening to us. I hope you feel better Lisa. Pat W.R. rollnright@cableone.net


Pat W R's December 26 reply to Pam's December 25, 2003 - Hi Pam, Those scales can be a mind-blower! I had become a slave to my scale. It is true that you are supposed to report any 2 to 3 lb weight gain in a day to your doctor but I have come to find that there are several other reasons for my overnight gains: Eating heavily after 6:00 pm, monthly issues, and also irregular bowel elimination. By all means though, check with your doctor. Also ask him about these things so that it may ease your mind when you do have increases. Also, only weigh once a day - in the morning in your birthday suit. Have a good day. Pat W. R. rollnright@cableone.net


Jon, December 29, 2003 - Hi everyone, Friday night was our Board meeting so I took Saturday off as well as Sunday - I hate typing and presenting reports. A big thank you to all who donated to CHFpatients.com, Inc., last year. Money's been tight family-wise and it has been just donations paying our web site bills. Thanks again.
     Hey, will someone e-mail the people at Healthy Heart Market, and ask them why people who have JavaScript turned off in their browser can use their site anymore? That really burns me up! Jon.


Valerie R, December 29, 2003 - Happy holidays, everyone! I have taken a year off from teaching (without pay) after I was told to go to a transplant center. I've been working on low sodium cooking. I never was much of a cook but I have found some very good and easy recipes. Today I am making chicken soup in a 6-quart crockpot. I ordered a variety rice pack from www.healthyheartmarket.com and tonight I tried their Sadaf Basmati Rice, Wild West flavor. I just want to share with you all that it was really good! My husband liked it, and that is always a good test. It's $2.50 a box, makes 2 servings at 35mg per serving. Other flavors are lower sodium. I bought variety pack. It's a little expensive perhaps, but it is very easy, like my crockpot soup. vgrogers@aol.com


Lisa's December 29 reply to Pat's December 26, 2003 - Hi Pat, Thanks for the post. It is so true about feeling like I am in CHF again. It is comforting to know I am not the only one that feels this way when having the flu. It is funny, I was searching The Archives and found almost the same post that I wrote about a 1-1/2 years ago. I just did not remember how bad I felt. I do feel much better today. Thank you again. God bless, Lisa. johnlisa@the-i.net


Pam, December 29, 2003 - Hi Guys, My hands keep getting numb and tingling slightly while I'm sleeping, and that wakes me up. I probably woke twenty times last night. I tried rearranging the pillows, but nothing seemed to help. Does anybody else get this? What do you do about it? I would love to have some advice. Hugs, Pam. spirlhelix@yahoo.com


Jim B, December 29, 2003 - Hi, I had my 6 month check-up with my cardiologist. He stated my heart was skipping. He ran an EKG and took blood. I asked if I should be concerned and he said to let him check the blood and he'll get back with me. He also said I need to lose weight. Does anyone have a clue as to why, and should I be concerned?
     Also, I was denied my long-term disability benefits with UNUM after my review, no surprise. I get SSD but it's getting harder to make ends meet. Has anyone here tried the Ticket To Work Program? If you have, could you share the results? I can't afford my supplements anymore; I need a part-time gig and fast. Thanks and happy new year. jamburns@msn.com


Nancy Hart, December 29, 2003 - Hi, I need a little of your time please. This concerns my son Joe, age 33. He was diagnosed with ankylosis spondylitis at age 17. He is currently on Celebrex 200mg daily. He is contantly in severe pain. He was diagnosed with left heart hypertrophy 3 years ago and he is currently on Vasotec 10mg and Norvasc 10mg.
     He gets very depressed and stops his meds, I think a death wish. He now has shortness of breath and some chest pain. He is refusing to go to the doctor. My husband says I am babying him. I also believe he has undiagnosed attention deficit disorder. He is not married so I have been his support system. I hate to nag, but what can I do to help Joe?
     He lives with a friend in Nashville, who also said last night that if he died it would not be so bad! I am his mother and I also think a person should do everything he can to help himself. Since I have no support from his father, what do I do? I think he has CHF. Could this be a part of the spondylitis, and where can I find help for him? I appreciate any assistance. Nancy. ODellM@ardmore.net


James, December 29, 2003 - Hi, I am admittedly irritated about the whole L-Carnitine thing. According to what I have read, there are 3 types of L-Carnitine: L-carnitine (LC), L-acetylcarnitine (LAC), L-propionylcarnitine (LPC). LAC is being looked at for Alzheimer's, LC is the most common variety, and LPC is the one that shows the most promise for heart conditions.
     Thus far, I have not found a resource for LPC. Additionally, I have not found anything conclusive on dosage which appears to range between one to 2 grams (1000mg to 2000mg) per day for CHFers. At the moment, I've started at one gram daily. Does anyone else have any thoughts on this 'un? jnj@spamcop.net


Jon's December 29 reply to James' December 29, 2003 - Hi James, I found a supplier of bulk PLC but I would have to become an official distributor and find someone to supply and fill the gelcaps, then sell them to cover costs, at the least. I don't have the wherewithal to make that happen and I have not found another source. Sorry, Jon.


Kathy, December 29, 2003 - Hi, I have CHF and I continue to have a problem with my stomach swelling up with fluid. I have been in the hospital twice to have fluid drained off. I am afraid I may have to go again. I am on a water pill but it is only one milligram and I am wondering if that will help me get some of the water off and my stomach back down to avoid going to the hospital. It seems that when I go to bed at night and get up in the morning, my stomach is not hard anymore but as the day goes on it gets that way. Does anyone have any suggestions? pumkinn3213@yahoo.com


Jon's December 29 reply to Kathy's December 29, 2003 - Hi Kathy, I assume you are taking Bumex since it is one mg. That is a strong diuretic. I always worry when reading posts like yours about the following:

All this and more is covered on this site. Start at www.chfpatients.com/start_here.htm. ;-) Jon.


Pat, December 29, 2003 - Hi Jon, You mentioned your bad knees. What are you doing for them: Any meds or specific exercises? I have one bad knee and I go to the rheumatologist on the 9th. I had lots of tests and x-rays. He thinks it could be more than just osteoarthritis. I hope that you and your family have a happy and healthy new year! pat_hammond@mindspring.com


Jon's December 29 reply to Pat's December 29, 2003 - Hi Pat, It's arthritis and I have had to drop 4 exercises to give them a chance to settle down. Then, the orthopedic doc says we can discuss possible exercises and maintenance therapies. I am not even walking now any more than I must to reduce the pain, which was quite bad. This is also to prevent falls, caused by my right knee buckling when the arthritis gets really bad and I walk on it. Jon.


Margaret D's December 29 reply to Pam's December 29, 2003 - Hi Pam, This happens to me all the time. I wake up and my hands are totally numb and then start tingling. Jon said once that we DCMers tend to sleep in the same position all night and thus get pressure on the nerves and numbness. I don't think there is anything you can do about it. I also wake up with giant red pressure marks on either hip or knee, as well as deep craters on my face from the O2 cannula. But hey, at least I am sleeping!
     Another angle you might investigate is having an overnight oximetry reading done to make sure your oxygen saturation isn't falling too low when you sleep. I used to wake up very, very frequently before I found out I needed O2 at night. I feel like a new person now! mdavis10@tampabay.rr.com


Bonnie, December 29, 2003 - Hi, I need some help! I just found out 2 hours ago that my mom has been having "minor heart failure." This was determined when her doctor ran a BNP blood test on her and the results came back at 126. My Mom is 76 years old.
     Here's my dilemma: Her doctor has told me that he wants her to see a cardiologist but my mom is scheduled to fly to Florida this Friday to spend time with my brother. I can probably easily find her a cardiologist in Fort Lauderdale but I don't know if it's safe for her to fly and travel right now given this new information. We do not currenly have a cardiologist. I will try to contact one tomorrow but right now I am panicking because I need to understand more about what I was told.
     Is her condition critical when her BNP is at 126? Should I completely cancel her flight to Florida until I can get her in to see a doctor where we live? If someone out there has any words of advice or can help me understand what is happening to her, I would greatly appreciate hearing from you. Bonnie. decosta.tn@comcast.net


Lydia Moore, December 29, 2003 - Hi everybody, I hope the holidays were good to you. I have had congestion in my nose and nothing seems to get rid of it. I was wondering if it is okay to take nose spray and to have a vaporizer going. I have been putting my head into a pot that has boiling water, with a towel over my head. Is this bad? God bless to all of you, Lydia Moore. Flanders66288@cs.com


Jon's December 29 reply to Lydia Moore's December 29, 2003 - Hi Lydia, The steam is fine but stay away from anything that has the word "decongestant" on it, including nasal sprays. Decongestants speed up your heart rate and can also trigger arrhythmias. If you want something over the counter, I suggest asking your CHF specialist what you can take, since it can vary from person to person, then double-check his suggestion with your pharmacist. Jon.


Curt's December 29 reply to James' December 29, 2003 - Hi, I am really confused now about L-Carnitine, which I just started as Jon had recomended. I am buying them from GNC at 60 caps of 250mg for $18.99. I thought there was only one kind. On the front of the bottle it says L-Carnitine, however on the back it also says L-carnitine Fumarate. What does that mean? Am I taking the right thing or wasting my money? Happy new year, everyone! Curt. curtishammock@juno.com


Jon's December 29 reply to Curt's December 29, 2003 - Hi Curt, PLC is a derivative of L-carnitine that has also been tested for CHF treatment - as has "regular" L-carnitine. So pound for pound, so to speak, it would be better than "regular" L-carnitine like you are taking. However, you are doing just fine with the product you use - keep taking it! Jon.


Joseph P, December 30, 2003 - Hi, I have been using glucosamine with great success for my aches and pains. My left arm hurt so badly at times that I took extra aspirin to help with the pain. I subscribe to web Heartcenter online, which sends me updated info on a lot of things to aid people with CHF and they suggested glucosamine for the problems of joint pain. I contacted my docs to get an okay to take it and they said to try it. It is a godsend for me. God bless, Joseph P. joeandol@shawneelink.net
 
Jon's note: I take 3 grams daily myself!  ;-)


James' December 30 reply to Curt's December 29, 2003 - Hi, There are 3 types of L-Carnitine in circulation. The L-Carnitine sold by GNC and others is just that - L-Carnitine. LPC has been found to be more beneficial according to at least one study but I haven't found it available anywhere yet. From what I've read, the recommended dosage for CHFers is right about 2 grams (2000mg) a day. Since I've just started taking it, I'm only doing 1000mg at first, then I'll bump up to 1500mg. I'm already taking entirely too many blasted pills each day as it is and this one is in 500mg caplets so that's 2 and then 3 more. <sigh> It's supposed to be good for exercising, helping the muscles burn fat, so hopefully I'll see some weight loss in there as well.
     The brand I'm using at the moment is Sundown. I use Sundown, Nature Made, GNC, and Vitamin World regularly for my supplements. GNC is fairly expensive so I'm looking at moving to Vitamin World, especially since they have a customer rewards program. jnj@spamcop.net
 
Jon's note: Trials have used anywhere from one to six grams daily for CHF. It won't help you lose weight but will improve energy level and use inside your body.


James' December 30 reply to Lydia Moore's December 29, 2003 - Hi, In addition to CHF, I also suffer mild sleep apnea and chronic sinusitis. The former is likely due to weight (I'm a tad over) and the latter is something I've had all my life. I never leave home without a few tissues in my pockets. As you can imagine, when I get a cold, it's pure nightmare.
     The big thing to watch out for this time of year is anything with a decongestant in it. Unfortunately, that means just about everything that's advertised and everything you've probably been accustomed to using. Decongestants stimulate the system and can get the heart going. My cardiologist has recommended I use Benadryl (the one without decongestant, mind you) and I've had good success with it. I also use a vaporizer with a little Vicks vaposteam when things get particularly bad. I've also found that my CPAP, with the humidifier turned off, is particularly useful in drying me up. jnj@spamcop.net


Nancy, December 30, 2003 - Hi, Saturday night I think I had the first episode of my ICD going off. I was sleeping soundly when I felt a heavy thud in my chest and my body nearly jumped off the bed. I always thought that it would hurt really badly but it wasn't really painful at all; it just scared me.
     Of course, when that happened I was afraid to go back to sleep so I lay there awake forever. For a couple of weeks I've been feeling some weirdness in my chest. I wonder if someone can tell me if it was the pacemaker/ICD too. The best way I know to describe it is that it feels like a cat purring pretty hard.
     I don't really know what to expect since I've never had these things happen until lately. Can anyone tell me if these things are actually the pacemaker doing it's job, please? Thanks, Nancy. ns1@alltel.net


David Wilson, December 30, 2003 - Hi, I am doing great and losing lots of weight since my gastric bypass surgery in October. I have lost over 60 pounds. My problem is that since losing weight my blood pressure is too low. I stopped my ACE inhibitor prinivil for a month, but the docs said I had to continue taking prinivil at a lower dose of 5 mg. The problem is that I have dizzy spells and sometimes pass out. I have also reduced my coreg dose down to 25mg instead of 50mg. The docs wanted me to reduce my Lasix to 40mg once a day but that does not work for me because my feet swell up really badly overnight so I take 40mg Lasix at night as well.
     Is there anything else I can do to raise my blood pressure a little? It gets as low as 79 over 39, which can make me pass out. davybwilson@webtv.net


Pat W R, December 30, 2003 - Hi all, I had been taking taurine and L-Carnitine for about a week when I noticed that I was becoming very dizzy and lightheaded. I stopped taking it after I almost passed out at a local store. I take Lisinopril, Coreg 25mg daily, Lasix, CoQ 10, hawthorne berries, selenium, and a thyroid med for Grave's Disease. My blood pressure always reads very low. I'd really like to try this therapy, if it's for me. I know that my cardiologist will just tell me to drop them altogether. Any advice? Thanks, Pat W.R. rollnright@cableone.net
 
Jon's note: If it were me, I would try low-dose taurine and work the dose up to about one gram three times a day, to see how I did before trying to re-add L-carnitine.


Craig B, December 30, 2003 - Hi, Unfortunately for me, my "heart condition" took a turn for the worse Saturday morning and caused me to have some severe edema (build up of fluid in chest and lungs) causing me to almost stop breathing! An ambulance came and whisked me away to the Gold Coast Hospital and there I stayed for 4 days! They gave me meds via IV to get rid of the excess fluid, meds for the chest infection and meds for the mild case of pneumonia I got due to the fluids being present. They have now sent me home but doubled my fluid tablet intake (I am now on 160mg Lasix) but hey, here I am, all roaring to go and full of jokes. That's when the nurses knew it was time for me to leave: I started getting a bit cheeky!
     So, ya can't keep me down! Whilst it was the worst 4 hours in my entire life, waking up Saturday morning not being able to breathe properly, until 4 hours later when they had me stabilized, I feel great now and am back to "normal."
     Thanks to all those that e-mailed me and responded to my earlier questions about panic attacks and depression. It seems - according to the doc - that I wasn't actually suffering from either but had actually been having episodes of pulmonary edema. When I questioned him about my "strange feelings" of misery and scaredness, he said, "No wonder you felt that way, especially when your chest and lungs are filling with fluid and stopping your breathing!"
     The outcome here seems to be that if you do actually have a high Lasix regime and fluid is still a problem for you, be sure to weigh yourself every day and really be aware if you are getting edema. Let your doc know as soon as possible so you can get that extra Lasix - or a visit to the ER will be just around the corner. bayce@optusnet.com.au


Joanne R's December 30 reply to Pam's December 29, 2003 - Hi Pam, I have painful tingling too, principally in my right arm and hand. I am quite arthritic and I suspect this comes from a pinched nerve in my neck. The best therapy I have stumbled into is to remove all my pillows and lay flat on my back. The change of position appears to correct the problem. It's not terribly scientific perhaps but worth a try! Be well. God bless. Joanne. muddyrds@hotmail.com


Pat W R's December 30 reply to Lydia Moore's December 29, 2003 - Hi Lydia, I found some stuff at WalMart called anti-cold bath. It is a bath additive that has camphor and eucalyptus. I haven't used it yet, though. I had a slight cold with a bit of congestion, but it went away before I needed to use it. I read the label but there were no real warnings (small children, pregnant women). It may be something that can work for you. I hope you feel better. Pat W.R. rollnright@cableone.net


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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