The paperwork never ends The Archives
June 1-15, 2000 Archive Index

Leland Y 6-1     the heart is a marvelous organ
Rieale's 6-1 reply to Eva M's 5-30     Xenical experience
Frank S' 6-1 reply to Jon's 5-31     support groups
Jon 6-1     need some help creating new CHF resource & more
Frank S 6-1     good price on CoQ10
Barbara P J's 6-1 reply to Jon's 5-31     Comp USA must like bad publicity
Robin Lynn 6-1     petechia questions & more
Jon's 6-1 reply to Robin Lynn's 6-1     medical info resources
Dave K's 6-1 reply to Jean C's 5-31     coping with humidity
Joe S' 6-1 reply to Jean C's 5-31     coping with humidity
Karen G 6-1     intro, supplements questions & more
Jill S' 6-1 reply to Jon's 5-28     cath procedure experience
Felix O 6-1     lost my SSD at review
Ruthie A 6-1     update, prayer request
Jill S' 6-2 reply to Ruthie A's 6-1     CHF & NSAIDs may not mix well
Lynn M's 6-2 reply to Ruthie A's 6-1     CHF & NSAIDs may not mix well
Lynn M's 6-2 reply to Jill S' 6-1     I also appreciated the sedative
Jon 6-2     caths and sedatives
Lynn M's 6-2 reply to Bill M's 5-30     migraines & auras
Susie O's 6-2 reply to Jean C's 5-31     humidity & CHF
Frank S' 6-2 reply to Jon's 6-1     determining docs' qualifications
Jon's 6-2 reply to Frank S' 6-2     determining docs' qualifications
Lori Pearson's 6-2 reply to Eva M's 5-30     Xenical
Donna's 6-2 reply to Robin Lynn's 6-1     petechia
Tom S' 6-2 reply to Felix O's 6-1     SSD review decision & options
Jamie S' 6-2 reply to Jean C's 5-30     humidity
Sherlene F's 6-2 reply to Felix O's 6-1     SSD review, Xenical
Jean C's 6-2 reply to Felix O's 6-1     SSD review, humidity
Bill D's 6-2 reply to Jon's 6-1     defining CHF specialist
Jon's 6-2 reply to Bill D's 6-2     doctors have a bad attitude about being pinned down
Jill S 6-2     trials for the latest pacemaker for CHF
Ginger 6-3     Lipitor side effects questions
Joe S' 6-3 reply to Donna's 6-2     too much aspirin & some good news
Brian's 6-3 reply to Jill S' 6-2     how long till re-synchronizers are available?
Sox Nelson's 6-3 reply to Karen G's 6-1     any info about MSM appreciated
Felix O's 6-3 reply to Tom S' 6-2     SSD reviews & options
Robin Lynn's 6-3 reply to Donna's 6-2     thanks & meds question for Jill S
Jon's 6-3 reply to Robin Lynn's 6-3     calcium channel blockers & CHF
Jon 6-3     now have a scanner & more
Jack 6-3     Methylsulfonylmethane
Frank S' 6-3 reply to Felix O's 6-3     SSD versus going back to work
Sandi M's 6-4 reply to Ginger's 6-3     Lipitor experience
Donna's 6-4 reply to Robin Lynn's 6-3     & to Joe S
Dave K's 6-4 reply to Felix O's 6-2     SSD reviews & appeals
John's 6-4 reply to Sandi's 6-4     cholesterol lowering meds
Al 6-4     update, CoQ10 experience
Frank's 6-5 reply to Al's 6-4     CoQ10
Jill S' 6-5 reply to Brian's 6-2     pacemakers for CHF
Jon's 6-5 reply to Jill S' 6-5     pacemakers for CHF
Phyllis A 6-5     CHF "cure" questions
Jon's 6-5 reply to Phyllis A' 6-5     CHF "cures"
Jesse 6-5     cough and monopril & more
Robin Lynn 6-5     calcium channel blockers, caths & more
Jon's 6-5 reply to Robin Lynn's 6-5     calcium channel blockers, caths
Joe S' 6-5 reply to Donna's 6-4     thanks for your note & more
Marlon F's 6-5 reply to Jill S' 5-29     LBBB (Left Bundle Branch Block)
Krista 6-5     getting a bi-ventricular pacer - anyone else?
Jon's 6-5 reply to Krista's 6-5     posting real life stories welcomed
Danny67 H 6-5     is a heart transplant really worth it?
Carol W's 6-5 reply to Ginger's 6-3     cholesterol lowering drugs
Jack 6-6     does this strike anyone else as strange?
Barbara P J 6-6     3-lead pacemakers for CHF & more
Judy S 6-6     anyone hear of this device for CHF?
Joe S' 6-6 reply to Jon's 6-5     that helps me understand a bit better
Frank S' 6-6 reply to Carol W's 6-5     Lipitor-type drugs
Leland Y's 6-6 reply to Carol W's 6-5     cholesterol lowering drugs & more
Beverly C 6-6     CHF docs, test results & CoQ10 questions
Jon's 6-6 reply to Beverly C's 6-6     docs, test results & CoQ10
Jon 6-6     CHF support groups on California
Lynn M's 6-6 reply to Danny H's 6-5     coping through humor
John Len's 6-6 reply to Lynn M's 6-6     humorous CHF experience
Suzy B 6-6     coping is difficult, denial & more
Don's 6-6 reply to Jon's 6-6     southern California CHF support group
Frank S' 6-6 reply to Jon's 6-6     southern California CHF support group
Darlene's 6-7 reply to Danny H's 6-5     intro, CHF info & more
Bill D's 6-7 reply to Judy S' 6-5     can you get more info?
Taavi K's 6-7 reply to Danny H's 6-5     is heart transplant worth it?
Sandi M's 6-7 reply to Danny H's 6-5     transplant versus CHF & more
Terry P's 6-7 reply to Lynn M's 6-6     CHF & humor
Lynn M's 6-7 reply to Suzy B's 6-6     coping with CHF
Kathryn's 6-7 reply to Don's 6-6     humor, support groups
Lynn M's 6-7 reply to Darlene's 6-7     CABG patch stories & more
Lynn M's 6-7 reply to John Len's 6-6     getting smileage out of CHF
Jan S' 6-7 reply to Suzy B's 6-6     questions about pacer leads & placement
Randy's 6-7 reply to Danny H's 6-5     heart transplant
Jon 6-7     heart transplant
Sheryl C 6-7     does anyone else get this?
Tony 6-7     has anyone had angioplasty with radiation therapy?
Judy M 6-7     seek MUGA info
Jon's 6-7 reply to Judy M's 6-7     finding info around here
Brenda C's 6-8 reply to Suzy B's 6-6     coping, humor, stories
Jack's 6-8 reply to Jon's 6-7     ya mean,...
Suzy B's 6-8 reply to Jan S' 6-7     atrial lead problems & more
Elaine 6-8     how do I ease potassium-induced muscle pain?
Joe S 6-8     Jon, what do you think?
Jon's 6-8 reply to Joe S' 6-8     time for another opinion
Lynn M's 6-8 reply to Jon's 6-7     everyone makes different choices & more
Frank S' 6-8 reply to Jon's 6-7     heart transplant & choices
Jon's 6-8 reply to Frank S' 6-8     heart transplant
Beverly C 6-8     to Lynn Moncrief
Suzy B' 6-8 reply to Jon's 6-7     how I feel about it
Dan C 6-8     intro, weight & L-carnitine questions
Jon's 6-8 reply to Dan C's 6-8     edema & PLC
Randy B's 6-9 reply to Jon's 6-7     living with heart transplant & more
Jon 6-9     my pooter is getting healthier
Shawn 6-9     cheaper meds in Canada experience
Sandi M's 6-9 reply to Jon's 6-7     thank you for the info & more
Frank S' 6-9 reply to Suzy B's 6-8     I feel the same way
Tom W's 6-9 reply to Lynn M's 6-8     I feel the same way
Jennifer W 6-9     how do I build up some fitness?
Jack's 6-11 reply to Shawn's 6-9     Mexico also fills prescriptions cheaply
Jim T 6-11     depression, posts, questions
Jim 6-11     muscle wrap procedure questions & more
Jon's 6-11 reply to Jim's 6-11     cardiomyoplasty
Mike Long 6-11     pacemaker questions & DO versus MD
Kathy 6-11     CoQ10 questions & does it affect K or Coumadin?
Terry T 6-11     question about switching beta-blockers
Shirley 6-11     Coreg dose increase questions
Walter K 6-11     doctors & medical records - Warning!
Frank S' 6-11 reply to Jim T's 6-11     coping with illness & depression
Barbara S' 6-11 reply to Shirley's 6-11     adjusting to Coreg, blood sugar, Coumadin & more
Carl 6-11     thank you for this site & more
Jon 6-12     will probably be gone a few days
Jack's 6-12 reply to Kathy's 6-11     CoQ10 will NOT affect Coumadin or sugars
Shirley Valdivia's 6-12 reply to Terry T's 6-11     atenolol
Darlene 6-12     warm sensation going down arm
Tony T 6-12     blood pressure concerns
Jack's 6-12 reply to Walter K's 6-11     screwed up medical records
Barbara's 6-12 reply to Carl's 6-11     seeking CHF specialist
Carol W's 6-12 reply to Terry T's 6-11     atenolol, changing meds
Taavi K's 6-12 reply to Walter K's 6-11     keeping meds straight in medical records
Frank S' 6-12 reply to Walter K's 6-11     medical records & more
Donna's 6-12 reply to Barbara's 6-11     finding a good CHF doc & more
Frank S' 6-12 reply to Tony T's 6-12     verapamil
Tony T's 6-12 reply to Jim T's 6-11     vitamins & depression
Tony T 6-12     I really like this site & more
Barbara S' 6-13 reply to Donna's 6-12     CHF specialists & more
Dee L 6-13     ECG question
Walter K's 6-13 reply to Taavi K's 6-12     docs, nurses, & medical records
Tony T's 6-13 reply to Frank S' 6-12     why I take verapamil
Phyllis A's 6-13 reply to Mike L's 6-11     getting a pacemaker or not
Joe S' 6-13 reply to Frank S' 6-12     article on doctors' mistakes
Lynn M's 6-13 reply to Tony T's 6-12     verapamil and CHF
Jon 6-14     I'll be slow but here
Tony T's 6-14 reply to Lynn M's 6-13     verapamil & CHF
Bill D's 6-14 reply to Barbara S' 6-13     CHF clinic in Orlando
Bill D 6-14     seek opinions on meds versus pacemaker & more
Phyllis A 6-14     Verapamil & CHF
Jon 6-14     Verapamil & CHF
Tom S 6-14     in defense of doctors
Ann C 6-14     when does low EF = transplant
Jon's 6-14 reply to Ann C's 6-14     low EF versus low Vo2max regarding transplant
Frank S' 6-15 reply to Bill D's 6-14     my opinion on Coreg
Jon's 6-15 reply to Frank S' 6-15     please explain
Ann C's 6-15 reply to Jon's 6-14     more info, any ideas?
Anita C's 6-15 reply to Ann C's 6-14     my transplant experience
Phyllis A 6-15     EF questions
Jon's 6-15 reply to Phyllis A's 6-15     EF info
Jon's 6-15 reply to Dee L's 6-13     sorry
Ginger 6-15     Verapamil & CHF, cold medicines & more
Jon's 6-15 reply to Ginger's 6-15     cold medicines & CHF
Donna Z's 6-15 reply to Bill D's 6-14     Coreg, missed or skipped heart beats & more
Sharon J W's 6-15 reply to Bill D's 6-14     new heart clinic near Sarasota
Debra J 6-15     hypertrophic cardiomyopathy and Verapamil
Walter K's 6-15 reply to Tom S' 6-14     doctors and medical record errors
Jon's 6-15 reply to Walter K's 6-15     doctors and medical record errors
Tony T's 6-15 reply to Phyllis A's 6-14     verapamil & more

Leland Y, June 1, 2000 - Hi, I was having my "Lent" breakfast this morning, consisting of a package of oats. Riddle on the oats package: If the heart beats 100,000 times per day, how many times would it beat in an average lifetime? Answer: 2,555,000,000 times. This is in reference to those who have been posting regarding the durability of our hearts. What a marvelous organ! Leland.

Rieale's June 1 reply to Eva M's May 30, 2000 - Hi Eva, Before I was diagnosed with CHF, I tried Xenical. It says in the pamphlet not to take it if you have a serious heart condition - and about a hundred other conditions - so I doubt it's a good idea with CHF. Anyway, I had a very negative experience with it. No matter what I ate, no matter how low-fat it was, I had lower digestive problems, if you catch my drift. It was one of the more disgusting experiences of my life. If you want more graphic info, just e-mail me.

Frank S' June 1 reply to Jon's May 31, 2000 - Hi Jon, I live in Costa Mesa, California, which is about 100 miles north of San Diego, where there is, as you know, a CHF clinic at the UCSD Medical Center. I have been invited to go there to be evaluated by one of 2 "specialists" which will be tricky because I cannot drive due to poor vision but when I hitch a ride I will ask them about any support groups in southern California. By the way, should anyone e-mail any info to you about any groups out here in God's country, please pass it on to the rest of us out this way. Thanks, Frank Smith.

Jon, June 1, 2000 - Hi everyone, I have narrowed down to two the really important things that need to be added to this site and I seek your help on number one. We need a way to locate CHF specialists. I have talked at length with various people in the CHF community, including the National Heart Failure Society of America and honestly, they don't give a rat's behind about us patients, only about being there for the doctors as a "professional" organization, so once again we're gonna have to do it ourselves if we want a useful CHF doctors resource.
     I will start a page listing CHF specialists by state, country or geographical area, whichever is most sensible in each case. I will not "rate" doctors but will list their contact information, including practice name, doctor's name, address, phone number, and Url and e-mail address if available. If you all think it wise, I will also list e-mail addresses below each doc for patients who see that doc and you guys can discuss each doctor's pros and cons by e-mail. <g>
     Now, I simply cannot do this alone. I need everyone to ask their CHF doctor if they want to be listed and then send me that contact info. You must okay it with the doc first! I will not make the page until I have enough doctors' info to make it useful. Please be sure of the following before sending me the info:

Naturally, if I don't get enough responses, I won't make the page. I do think it would be a valuable addition since I get requests almost every single day for the name of a CHF doctor in a given area. I also will need people to help me wander the web and ask CHF doctors through their web sites, hospital web sites and clinic web sites if they are willing to be listed, but that will wait until the page is up and running. You can e-mail doctor information to me here for now, until the page is up with a form.
     I'll be putting up the rest of the posts later this evening. I have to take my daughter here, there and everywhere today. ;-) By the way, if you want to ask the National Heart Failure Society of America why their members do not want free advertising in the form of a resource like the one I described above - which would help patients in need - you can go to their web site and ask them. Jon.

Frank S, June 1, 2000 - Good evening to all, especially those who take interest in one of my favorite chemicals: CoQ10. Recently, Sundown Vitamins in Florida was purchased by Puritan's Pride in New York, who will arguably be the largest manufacturer of vitamins and supplements in the USA. Those of you who may agree with me that a therapeutic dose of CoQ10 is 300mg daily and also agree that softgel is the most effective form should like the deal I am about to describe. Puritan's special summer sale is 3 bottles of one hundred and twenty 75mg softgels in each bottle for $98.85 total. That is $.275 for each 75mg softgel. I am confident that anyone who has bought softgels of CoQ10 in larger doses will agree. Puritan's phone number is 800-772-9834 for customer service and 800-738-8482 for the order desk. They also have a product catalogue for the asking. I hope this will save some unnecessary expense, which it sure does for me. Later, Frank Smith.

Barbara P J's June 1 reply to Jon's May 31, 2000 - Hi Jon, If Comp USA PC really understood what would be best, they would be at your home with the very best machine they have and transfer your information to the new machine. The bad publicity they are receiving - rightly so - could at least be softened by a completely new system. Just my thoughts, 'cause I've certainly told people to beware of them. Barbara P J.

Robin Lynn, June 1, 2000 - Dear Jon <g>, I know you put a lot of time into this site and I am almost ashamed of myself to ask of you one more thing when I am looking for medical info that may or may not be CHF related. I would like to have to a link to take me to several places such as Medscape, medical dictionaries and the such. Maybe I am just Internet impaired but I have a hard time finding such links.
     The one I am presently looking into is petechia. I am also wondering if anyone else has this unsightly condition? They are very small red or purple spots, then they fade to brown. In my case they started in my mid-section and my chest. They started spreading down my arms just a few months ago and I recently found them in the thousands around my ankles and now they are traveling up my legs. Weeell to make it all worse, now they are on my face! When they originally appeared the docs suspected liver problems since they were accompanied by pain under my right rib, which I still get sometimes. My liver enzymes were normal and my cardiologist says that there is inflamation "somewhere" causing bleeding under my skin. Nothing has been found yet. With all the new areas of it, I am planning a visit to my internist to see what we can find out. If anyone has had experience with this to the extent that they are covering my body, I would greaty appreciate your input and hearing from you. Thank you Jon and to all on this site. God bless, Robin Lynn.

Jon's June 1 reply to Robin Lynn's June 1, 2000 - Hi Robin, There are links to many excellent medical dictionaries, as well as to general medical resources at my Links page. If you are unsure of the spelling of something, Gray's is a very good dictionary because you can either seach it or you can load the entire page for any given letter of the English alphabet.
     I don't link to Medscape beause I can't use their site. The scripts their webmaster uses are incompatible with my browser's security settings. I have talked to their webmaster about it, and although he is aware of the problem, he just goes off in a snit whenever it is mentioned. <g> There is a new Merck Manual out but I am still trying to decide whether or not to link to it since it tends to lead people into thinking their problems are worse than they really are. Jon.

Dave K's June 1 reply to Jean C's May 31, 2000 - Hi Jean. I don't know about humidity, however I live in north central Pennsylvania. A couple of years ago I worked in the Keys after hurricane George and I thought I was gonna die. The heat and humidity were such that I left my motel and walked to the car and had to sit for 10 minutes to get my breath. That was before I was diagnosed, however I knew what it was. I returned north and it was much better. Good luck, good ole Dave.

Joe S' June 1 reply to Jean C's May 31, 2000 - Hi Jean, I moved from the central coast of California to the eastern Sierras, where it the humidity is in the low 20s and 30s. I haven't felt this good in years. In fact, yesterday the doctor said my heart has improved so much I can cut down on all my meds. I contribute all of this to low humidity, eating right, exercising and tons of prayer. Joe S.

Karen G, June 1, 2000 - Hi, I have been reading this message board off and on since January. In October of 1998 I went to the emergency room in our local hospital with pulmonary edema. I was in very serious condition and was put on a ventilator for about 12 hours to assist my breathing, and lasix to help clear my lungs. Up until then I had been in excellent health, walking 10 miles a week and eating healthy. I was on no prescription medicines, only a multiple vitamin with extra vitamin E and C. Then I was diagnosed with dilated cardiomyopathy with an EF of 15. What a shocker! It has been quite an uphill struggle but now I am doing pretty well. I had worked part-time in an office and began going back in January of 1999 a few hours as I felt like it. I have an extremely nice boss who has continued to pay me right up until April my full part-time pay. I am one fortunate gal. I have applied for Social Security Disability as I wish to cut back my hours even more. My energy level isn't that good and I want to be able to do some other things that I am not able to do right now.
     I have no family history of this disease so my cardiologist thinks a virus caused my condition. My last echo was in October of 1999 and showed no improvement. I have been thinking of trying supplements and just heard about MSM (methylsulfonylmethane). Can anyone advise me on this supplement? I have an appointment with my cardiologist this afternoon and will mention this to him to see if I could take it with my present prescriptions. I am taking 25mg Coreg twice a day, 20mg Zestril, 4mg Coumadin, 0.125mg Lanoxin, 25mg spironolactone and 10mg lipitor a day since my bad cholesterol was too high, although my catheterization in January of 1999 showed that my veins and arteries are very good.
     I want to thank you Jon, for the wonderful job you do informing us CHFers with this web site. I was thrilled when I found it. I haven't posted until now since I had no questions and am not one to go public myself. I feel that I am a very lucky lady. I was 58 going on 59 when this happened to me and I know that all the prayers said for me and that are continually said for me are working. I cannot complain. I'm sorry to ramble on and thank you again for being there for all of us. God bless everyone. I am a Jesus lover too, Karen G.

Jill S' June 1 reply to Jon's May 28, 2000 - Boy, I must be lucky. I have absolutely no memory of the sheath being pulled at all after my cath. I know I was given Versed and maybe some other sedative or tranquilizers. I swear, they could have done an amputation and I wouldn't have felt much, and cared not at all. I highly recommend Versed!

Felix O, June 1, 2000 - Hi everyone, I just received a letter from Social Security explaining to me that after reviewing my disability case they have decided to cease my benefits after performing a review. I had been receiving benefits for 3 years but I guess that since my CHF has improved, there is nothing I can do to appeal this. I might not have DCM anymore but still feel SOB sometimes. Well, I guess it's time for me to stop complaining and get a job.

Ruthie A, June 1, 2000 - Hi all, Here's the update on my back stuff: I need surgery again but my ortho doc does not want to do it right away. He is sending me to physiometry to try to recondition my back and build a little strength. They will also help me with pain management. The point is to try to retard the progression of my condition for awhile and allow me to get emotionally ready for surgery. In the meantime, my doc has doubled my Neurontin and put me on 800mg ibuprofen 4 times a day for pain. Man, my stomach is not handling this well with all the heart meds I take too. Your prayers on my behalf would really be appreciated. Thanks in advance, Ruthie A.

Jill S' June 2 reply to Ruthie A's June 1, 2000 - Hi Ruthie, Does your ortho know that NSAIDs are not recommended for CHF patients? The current guidelines say we are to "Avoiding anti-arrhythmic drugs, nonsteroidal anti-inflammatory drugs, and most calcium channel blockers." Make sure your back doctor is up on this!

Lynn M's June 2 reply to Ruthie A's June 1, 2000 - Hi Ruthie, Please, please, please talk with your doctors about that whopping dose of ibuprofen. Orthopedic doctors may not be aware of what some cardiologists know about this. Last summer after I spent 3 days on a ventilator for pulmonary edema, a cardiologist told me that the huge ibuprofen doses I was taking (exactly the same dose as yours) could have been the cause. I had been placed on ibuprofen because during a CABG the month before, they aggravated an old shoulder injury. He said - and I've later seen the same thing in a few Web articles on CHF - that NSAIDs (ibuprofen is an NSAID) can cause CHFers to retain fluid. There are alternative non-narcotic painkillers and he put me on one (which I've unfortunately forgotten the name of). I don't want you to unnecessarily experience the near brush with death that I did, nor do I want you to experience the sheer terror of frantically gasping for air in the ER like I did until they knocked me out and put me on the ventilator. I'm praying for you, my dear. Lynn M.

Lynn M's June 2 reply to Jill S' June 1, 2000 - Hi, I heartily second Jill's recommendation for Versed! In addition to blotting out pain and heavily sedating you, it causes you to forget everything that happened while under its influence and even a bit of what happened before they gave it. I never even remember them giving it to me whenever it's been given. They gave me Versed when they pulled the second set of chest tubes after my most recent CABG. I kept asking hubby over and over whether they pulled the tubes yet, after I woke up. Lynn M.

Jon, June 2, 2000 - Hi, For those who have not had a diagnostic cath, I'd like to put in my 2¢ worth. I had no sedative at all and my procedure was nearly painless, very professional and caused me no real worry at any time. It would have been entirely painless except the neck cath was done by a resident and he didn't get it quite perfect. It wasn't anything to holler about, though. In fact, I was fascinated watching the big monitors that showed my coronary arteries in black (filled with dye) on a white screen. It was pretty cool. If you do not have excessive risk factors and have an experienced team doing the procedure, a sedative really isn't "required." I certainly respect the fact that many people would rather not watch or be aware during the procedure and a sedative is great for them. I just don't want you all thinking it's a horror story having a cath. :-) Jon.

Lynn M's June 2 reply to Bill M's May 30, 2000 - Hi Bill, A crescent-shaped kaleidoscope of colors is one of the ways a migraine aura can manifest, I'm sure. I used to get colorless spinning pinwheels in the eye opposite of the side where the pain occurred. Sometimes my aura would start off with a few pinwheels, then gradually grow to block all of my vision in that eye except for a pinhole in the center. I also had an aura once where suddenly the entire world seemed to be behind smoked glass. My sister's eye on the side opposite the headache would actually swell up, blacken and close. That was something to behold! In a nutshell, migraine auras can show up in a variety of forms. My auras were distinctly visible with my eyes closed. Also, my migraines were often preceded 12-24 hours in advance by a sudden overwhelming feeling of exhaustion, as if the bottom of the world was falling out.
     Do you feel anything weird on the side opposite the eye where you see the crescent? Do your eyes develop really dark shadows underneath them afterwards? Are you sort of blind, not from the colors, but after they disappear? Also, migraines can wake you up in the middle of a deep sleep. Do you ever suddenly wake up with this? I've had these things happen, too. Lynn M.

Susie O's June 2 reply to Jean C's May 31, 2000 - Hi Jean, I have had problems with the humidity since last year, when I developed problems also. It seems the heat and humidity really cause breathing to be difficult, and I seem a lot more tired than normal.

Frank S' June 2 reply to Jon's June 1, 2000 - Hi, Here is another Dear Jon letter. Personally I will, and we all should pitch in with whatever info we can gather about CHF specialists. Cynical me also says that some of these doctors may consider themselves CHF specialists but we should be sure that we know what criteria to use when checking some of these prima donnas out. Later, Frank Smith.

Jon's June 2 reply to Frank S' June 2, 2000 - Hi Frank, I'll have to work up a list of things to check for. Off the top of my tired head, I'd say that a CHF specialist should:

It would also be nice to know if these guys are:

Lori Pearson's June 2 reply to Eva M's May 30, 2000 - Hi Eva, I asked my regular doctor and my cardiologist about taking Xenical. They told me I could try it but most insurances don't cover the cost, and it is quite expensive. The side effects are very, very unpleasant according to both the pamphlet I read and the doctors and nurses. Good luck, Lori Pearson.

Donna's June 2 reply to Robin Lynn's June 1, 2000 - Hi Robin, I am a medical technician and worked for a doctor who was a specialist in hematology, which is the study of blood disorders. Petechia can come from not having enough platelets - a low platelet count - and can come from a number of different causes. Taking too much aspirin can cause this to happen so if you are taking Coumadin, that could be a cause for this. Please ask your doctor to check your blood for your platelet count and your bleeding time. You may have to have your aspirin or Coumadin therapy adjusted.

Tom S' June 2 reply to Felix O's June 1, 2000 - Hi Felix, I wouldn't take the SSD review decision lying down. If you are not up to par physically enough to work or if you are at an age where meaningful and gainful employment is impossible to obtain, then you are still disabled and as such are entitled to SSD benefits. You should avail yourself to the remedies to reverse that decision and don't wait because I believe there is a time limit to file an appeal. At least file the appeal and then decide which course of action you want to take. If you should find a job during that period and feel fit and adequate to the task, then you can always end the appeal process. The old SSD benefits are the bird in the hand while any job can well be the proverbial bird in the bush.

Jamie S' June 2 reply to Jean C's May 30, 2000 - Hi Jean, Humidity is the amount of moisture (water) in the air. So the higher the humidity, the more water you breathe in. Your lungs have to work harder to expel the moisture. In the lungs' air sacs (alveoli) is where the exchange of gases take place (oxygen and carbon) and with extra humidity, it is harder for the exchange of these gases to take place.

Sherlene F's June 2 reply to Felix O's June 1, 2000 - Hi Felix, I just read your post about Disability reviewing your case. Did you know they were doing this? Did they get all your recent records from your doctors, etc? I'm not being nosy, but how old are you and what state do you live in?
     As for Xenical, I have taken it and it kept me up all night, If you know what I mean! I can't sleep as it is and I'm not sure it helped me lose any weight. Of course I stopped taking it before I gave it a chance, but ugh! God bless!

Jean C's June 2 reply to Felix O's June 1, 2000 - Hey Felix, That's great! You're better! From all the wonderful responses I've gotten on humidity and SOB, I honestly recommend that you try looking for work where it is air conditioned. It helps lower the humidity so you can breathe easier. I wish you great good fortune in your future. Thanks to all of those who reassured me that I'm not the only one going about gasping like a fish out of water.

Bill D's June 2 reply to Jon's June 1, 2000 - Hi Jon, Identifying a real live CHF specialist may be harder than you think. I e-mailed the Mayo Clinic here in Jacksonville. I specifically asked them if they had a CHF Specialist. Here's what I got back: "We have 12 cardiologists. Two have indicated a special interest in congestive heart failure." See how she danced around my question? Maybe there isn't a medical definition of a CHF specialist? I did write Cheryl Yano of the HF organization. Bill D.

Jon's June 2 reply to Bill D's June 2, 2000 - Hiya Bill, Yeah, I've been through this song and dance with my own CHF doc, who did talk to the HFSA for me with no luck. That's where they want to start quibbling - definitions. It really isn't difficult. If it were, some of those studies on my CHF specialist page could not have been done, since they refer to "CHF specialists!"
     If a cardiologist practice or clinic with multiple cardiologists refers most of their CHF patients to a specific cardiologist, it's a safe bet he qualifies as a CHF specialist. If a doctor practices in a CHF clinic, he's most likely a CHF specialist. The medical profession in general hates to be pinned down on anything. It's a bad mindset. I would say that e-mailing the 2 doctors in question and asking them whether they receive most of the CHFers that walk into the practice would answer the question, but whether they'll even say that much, I don't know.
     The first good day I have, I'll write a form letter and post it so anyone who wants to help find CHF docs can just use that. No one ever told me running this site was gonna be easy. <g> I certainly do appreciate the help and offers of help I've received so far, including yours, Bill. Jon.

Jill S, June 2, 2000 - Hi, I received this today from inquiring about the Guidant trial study (dual chamber pacing devices) currently being carried out. Here are locations in California where trials will run.

"Thank you for your interest in the Guidant COMPANION Trial. Currently we only have the following centers in California:
Cedars-Sinai Medical Center, Los Angeles, CA
Contact Linn Defensor, RN (310) 423-6034 (this center is not yet enrolling subjects)
Good Samaritan Hospital, Los Angeles, CA
Contact Beverly Firth, RN (213) 977-4176 (this center is currently enrolling subjects)
Loma Linda University Medical Center, Loma Linda, CA
Contact Jennifer Connelly, RN (909) 558-8273 (this center is not yet enrolling subjects)
Mercey General Hospital, Sacramento, CA
Contact Deirdre Oman, RN (916) 733-6290 (this center is not yet enrolling subjects)
University of California, San Francisco, CA
Contact Kimberly Scheibly, RN (415) 476-9218 (this center is currently enrolling subjects)
Sharp Memorial Hospital, San Diego, CA
Contact Pam Waack, RN (858) 244-6800 (this center is currently enrolling subjects)
     If you contact the center nearest you, the nurse should be able to give you information about the study as well as tell you the criteria for enrollment into the study. Please note that if the center is not yet enrolling subjects, the nurse may not have all the information about the study right now and may need to call you back or ask you to call back after a specified amount of time. These centers will be participating and will be enrolling subjects in the near future. I hope this information is helpful.
Sincerely, Beth Beim -"

Ginger, June 3, 2000 - Hiya's, I have a question for some of you. I just recently got put on Lipitor. So what's one more pill, eh? <g> What I want to know is, if anyone here taking it experienced stomach aches and nausua in the beginning. If so, did it go away after a few days? If it continues I will talk to my doctor about it but of course it's a weekend that I start taking it. Figures, huh?! I think the worst part of us having to start a new drug is the side effects. Thanks in advance ya'll. Cya's at chat. Stay well! :-) Hugs and prayers, Ginger.

Joe S' June 3 reply to Donna's June 2, 2000 - Hi Donna, I watched my mother die a horrible death 12 years ago from too much aspirin. She bled to death internally. I am not blaming the doctors because they told her not to take any more aspirin, so she switched to bufferin. She didn't know they were the same. Maybe the doctors could have been more explicit. She had CHF so badly that I could watch her ankles bloat up with fluid. I do have some good news. Last Wednesday I was told I no longer have CHF. I didn't know it could go away. I still have a bad valve but no more CHF. Joe S.

Brian's June 3 reply to Jill S' June 2, 2000 - Hi Jill, What would be a wild guess to how long it will take to have these dual chamber pacemakers widely available? This sounds like what I've been waiting 25 years for. It sure sounds like it should slow the progress of heart failure and make you feel better!

Sox Nelson's June 3 reply to Karen G's June 1, 2000 - Hi Karen, I am very interested in what your cardiologist said about Methylsulfonylmethane (MSM). I'm always looking for something for my shortness of breath. Any information you might have about MSM or any other will be appreciated. Thanks, Sox.

Felix O's June 3 reply to Tom S' June 2, 2000 - Hi Tom, I have been thinking about this whole thing since SSA started reviewing my case in January. Maybe I should consult an attorney. Despite the fact that my heart condition has improved, I still have uncoordination in my left arm and leg after suffering a stroke 4 years ago. I know I only have 10 days to appeal without losing my benefits. My EF went from 21% to 53%. My heart size went back to normal and I'm only 36. My doctor tells me my heart is ok. I only have mild CHF symptoms. If you add that I had a skilled work history, my chances of winning an appeal are not good, I guess. I hope this improvement is not temporary because I know CHF is recurrent. Thanks for your support.

Robin Lynn's June 3 reply to Donna's June 2, 2000 - Hi Donna, Thanks for the info. I was tried on blood thinners but couldn't tolorate them and am now just on 325mg aspirin per day. This still may be too much for me though. I have had so much blood work lately, I can't imagine them missing it if my platelet count is low. I do think they are after a lower platelet count due to the arrhythmias I have, to prevent blood clots.
     To Jill, you stated that people with DCM should avoid calcium channel blockers. I have been taking Norvasc for a few months now. When my cardiologist put me on it, he took me off my ACE inhibitor, which I wasn't tolerating very well either. I must say that the biggest improvment in my lifestyle came with that switch. I was constantly suffering a tightness in my upper left chest that at times (a few times a week) would incorporate my shoulder, neck, jaw, and my left arm felt as though it would fall off! My chest, shoulder, and left arm had a dull ache 24/7 and it was numb most of the time. He said the safest way to know if it was cardiac spasms was to try Norvasc and see if it relieved it. Well, it did. My arm functions well now and I only have occasional tightness now but not too often. Why are calcium channel blockers not recomended for DCM patients? God Bless, Robin Lynn.

Jon's June 3 reply to Robin Lynn's June 3, 2000 - Hi Robin, In general, calcium channel blockers are a bad idea for CHFers since they do not directly improve CHF, and in some studies have been shown to shorten our lives. Amlodipine was thought to be an exception but this has been disproved. Remember that calcium channel blockers are class 1 anti-arrhythmic drugs so if you have arrhythmia, the need for the anti-arrhythmic drug may be more important than possible worsening of your CHF. And of course, everyone reacts to drugs differently. As a general statement though, it is accurate to say that CHFers should not take calcium channel blockers, since they slow the heart's conduction and may worsen CHF or even shorten our life. Jon.

Jon, June 3, 2000 - Hi everyone, Well, my excellent wife surprised me today with the gift of a great legal-sized scanner - the exact model I've had my eye on but never expected to get, complete with outstanding software. So if you've been wanting to have photos added to your bio and just had no way to do so, let me know by e-mail and we'll get it done. Jon.

Jack, June 3, 2000 - Hey guys, Methylsulfonylmethane is a hoax just like it's daddy, DMSO. It would probably be better and cheaper to just sit around all day chewing the heads off sulphur matches. No doctor is going to give you information about whether it is safe to take with real medication because there is no information about it. It must be really good stuff if a 30 day supply is one-half pound! Go out in your yard or in your garden where you grow vegetables, and eat the dirt around them. There are more essential nutrients in the dirt around vegetables than you can buy from these charlatans. Most of the people who post here are already sick, so it doesn't make a whole lot of sense to start gobbling strange chemicals just because you read some propaganda. Magic bullets only kill werewolves. They don't exist in medicine or in "fringe-pharmacology." Jack.

Frank S' June 3 reply to Felix O's June 3, 2000 - Hi Felix, I get the impression that you want to get back to work and I believe it would not be prudent for you to appeal SSA's decision at this time especially since your doctor says your heart is ok. However, I am not sure what ok means in your particular situation. Better to try to work than sit and stew. Most of us wish we could. Good luck, Frank Smith.

Sandi M's June 4 reply to Ginger's June 3, 2000 - Hi Ginger, I have been on Lipitor for 3 years. At first I had terrible stomache pains and nausea. I also had some pain in my shoulders. It went away after about a week. Each time I have had my dose increased, I get the nausea again. I hope it works out for you. I have been on every other cholesterol lowering drug out there and it does work the best for me. Also, I am checking into the dual chamber pacing devices. My CHF specialist at Shands is going to get back to me with all the info. I will post what I find out about tests in Florida. Sandi.

Donna's June 4 reply to Robin Lynn's June 3, 2000 - Hi Robin, Aspirin can affect your bleeding time so it may be that your bleeding time is off. I cannot take aspirin since I get petechia. I am allergic to aspirin and get petechia from taking it for too long a period of time. I would talk to your doctor about this problem. While I was working for the hematologist and would get a patient for a blood work-up, the first thing we would ask is, "Do you take aspirin?" (and how much how often) If the patient had a prolonged bleeding time (different test than a platelet count), most times it was because of the aspirin therapy. Also, aspirin can be very tough on some people's stomach.
     Joe S, it's wonderful news that you no longer have CHF! I keep hoping that someday I'll wake up and hear that I no longer have CHF, and that this was all a bad dream but I'm afraid I'll have no such luck. I'm so sorry to hear about your mother. A lot of elderly people take lots of aspirin. Aspirin is a great drug when used properly but a lot of elderly people just seem to pop it every day so they don't get headaches, and if not monitored it can cause a whole host of problems. It is great news about your health, Donna.

Dave K's June 4 reply to Felix O's June 2, 2000 - Dear Felix, I would suggest if you are not happy being off SSD, then see your friendly attorney and appeal. If you do not appeal, it is certain you will lose your benefits and I suspect it is easer to appeal than to start over. Your heart may appear to be ok but as you say you have other problems as well, why simply toss up your arms and say ok, take it away. Good luck, good ole Dave.

John's June 4 reply to Sandi M's June 4, 2000 - Hi Sandi, Have you tried Zocor? I have been on Zocor for about 2 years with no side effects that I know of.

Al, June 4, 2000 - Hi, A short message of encouragement: I was diagnosed with CHF in November of 1993 with an EF of 13%. We bought a sailboat and left Seattle for Alaska, then back to Seattle and down the coast to Mexico, where we enjoyed life for 4 years. In June of 1998 at Balboa Hospital in San Diego I had a cath and and EF of 10%. I felt like my time was up. We sold the boat and moved to Minnesota and I went on 200mg CoQ10. I had every possible symptom, like being unable to sleep lying down, liver protruding below my rib cage, swollen ankles, rash on lower legs, tired, tired, tired, finger nails turned to chalk, and on and on. After being on 100mg of CoQ10 twice a day for several months I began to improve and most of my symptoms are gone. I still can't run a mile and my sex life is not happening but I feel great and we are in the market for a sailboat this summer. I may be back in Mexico before the snow flies here in Minnesota. If you are not on CoQ10, I highly recommend it. Thanks and good health to all.

Frank S' June 5 reply to Al's June 4, 2000 - Hi Al, You obviously are blessed with a positive mental attitude, which should explain in my mind why CoQ10 works better for you than others. However, the facts speak for themselves. For most people who give it a chance and give it a chance to work at higher doses, it does what it is supposed to do - energy, energy, energy. Hoist them sails and stop by Newport Beach and pick me up on your way to Cabo San Lucas. Frank.

Jill S' June 5 reply to Brian's June 2, 2000 - Hi Brian, I have no idea when they will be available. There has been a ton of publicity about them in the press in the past week. It is still in the trial study stage. Maybe Jon knows more?

Jon's June 5 reply to Jill S' June 5, 2000 - Hi Jill, Ya gotta keep in mind that the media knows nothing, verifies nothing in depth, and blares every tidbit like it's the next cure and due tomorrow. :-( The studies of pacemakers for CHF has been going on since at least 1995 (PATH-CHF) and there are zero devices approved by the FDA for CHF treatment so far. With that in mind, I'd not hold my breath. If I had to guess - and it's only a guess - I'd say early 2002 before "re-synchronizers" are available anywhere but trials (and I'm being hopeful). Also, we need to remember that most of these devices will only benefit 25 to 50% (and that's what the manufacturers say and you know they're hyping the devices usefulness!) of CHFers. The implantation includes placing a device inside your body and at least 3 leads, one being a very tricky placement indeed, then coordinating them all to keep your heart going properly. It is by no means a "quick fix." Jon.

Phyllis A, June 5, 2000 - Hello to Jon and all, I haven't posted in a long time but I always read the board. Jon, I read that someone said that the doc told them they no longer have CHF. I thought once you were diagnosed you always have it but maybe like me, your symptoms improve. Is this true?

Jon's June 5 reply to Phyllis A's June 5, 2000 - Hi Phyllis, I go into this in The Manual, but here it is in brief: About 27% of CHFers may get better without "special" treatment; within no more than one year of diagnosis. No one knows why. If your CHF is caused by valve problems or myocarditis, etc,..., then the underlying condition can be fixed - with valve surgery, antibiotics, etc,..., and the CHF disappears. However, CHF is not a disease; it is a bunch of symptoms that is caused by damage to the heart inflicted by a disease.
     So if the underlying condition can be "cured" and no permanent damage was done to your heart at any time during the process, your CHF can be "cured." However, permanent damage is usually done by heart attacks, clots, strokes, cardiomyopathies, chronic high blood pressure, chronic alcohol abuse, chemotherapy, etc. In that case - the usual case - you may go "in and out of" CHF but it always lurks in the background waiting to pounce when you stray from your meds, diet, exercise, or just when your heart gets even more tired than it already is. That's why we are called "compensated" or "uncompensated" In the first case, our meds and lifestyle changes are keeping CHF at bay. In the second case, they are not, and we are in chronic CHF.
     For most of us, we hope to remain compensated and if we regain near-normal heart function, we will stay on ACE inhibitors and beta-blockers anyway for the rest of our lives so our CHF hopefully does not return. We will never be "healthy" again and we will never regain full strength and endurance, even if our EF gets into the "normal" range. I hope that helps. Jon.

Jesse, June 5, 2000 - Hi, I was diagnosed in January. Some days I feel good, some days I don't even feel like climbing out of bed. For the last 2 months off and on I have been having trouble after I cough. Could this be related? I am new to this and it is very confusing. I am glad I found this site. The name of the medicine I take is Monopril. I go back June 14 for an echo. Can anyone suggest questions I should ask my doctor?

Robin Lynn, June 5, 2000 - Hi guys, I I didn't know that Norvasc was an anti-arrythmic drug! My cardiologist has told me many times that those types of drugs could be dangerous to my overall health, and I agree. I did not see it descibed as such when I looked it up. I was very concerned when he took me off the one and only drug (ACE inhibitor) that says it can improve my life span. Now to find out that I was taken off the good one and put on a bad one!? What to do? I have much relief from the suspected spasms now. Thanks Jon for the info. I needed it and will follow up on it.
     Donna, thanks for your info and concern. I have a friend who's husband works for the FDA and she says that if they could, they would make asprin by prescription only. It is the most dangerous over the counter medication available. The problem is that it has been out too long to take it off. The number of people who die due to aspirin over use is alarming.
     It might be of some interest you all to know that I was listening to PRM here in Mississippi to a show dedicated to health issues. Today they had a heart surgeon taking calls and I called to ask a question about my stress test results. He came to discussing the cath procedure for people with DCM and did not recommend it! He said that because of the already weakened heart, it was too risky and that he would only do it under extreme circumstances. I found that statement alarming. Haven't we all had one? Anyway, he has a web site where you can chat with doctors and ask questions. I will give more info about this web site when I check it out so that I won't lead anyone to a bogus site.
     Thanks a million for all of you here at Jon's. You are all so helpful to so many. God bless each and every one of you and may He put His healing hands upon you. Robin Lynn.

Jon's June 5 reply to Robin Lynn's June 5, 2000 - Hi Robin, Please understand that you have not been taken off a "good" drug and placed on a " bad" drug. Here is what I said in my previous post:

... if you have arrhythmia, the need for the anti-arrhythmic drug may be more important than possible worsening of your CHF. And of course, everyone reacts to drugs differently. As a general statement though, it is accurate to say that CHFers should not take calcium channel blockers,..."

You have to remember that everyone reacts to drugs differently and that different combinations of health/heart problems require different combinations of drugs. In your case, the actions of a calcium channel blocker may be more important to you than those of an ACE inhibitor. After all, the switch made you feel better, didn't it? That doesn't mean that "most" CHFers should take the drug you take to make you feel better though; and because a drug makes other CHFers feel better does not guarantee it will do the same for you. Medicine is not an exact science. Do question your doctor about it, but do it so that you understand why you are taking the meds you take and why they make you feel better. Don't accept vague answers. That way, you can help us understand why this mix of meds helps you and that info may help someone else in similar circumstances to yours!
     About the cath, all I can say is that this guy disagrees with just about everybody in the medical world. ;-) Any invasive procedure has real dangers but a "diagnostic" cath has far less risk than a cath done for angiplasty/stent/rotoblater purposes. I myself will not hesitate to have another cath whenever I need it. Diagnostic caths are not often done by cardiothoracic surgeons but rather by interventional cardiologists who specialize in such procedures on higher-risk patients. Jon.

Joe S' June 5 reply to Donna's June 4, 2000 - Hi Donna, Thank you for your note. My mother was taking over 10 aspirins a day before I caught it. She was obsessive compulsive in everything she did and it finally killed her. It was many years ago so all pain is gone from the experience. Joe S.

Marlon F's June 5 reply to Jill S' May 29, 2000 - Hi Jill, I'm sorry that it took so long to reply to your question about LBBB (Left Bundle Branch Block). When the heart sends an impulse from its pacemaker to the AV node, the electrical activity pauses for just a moment and then is transmitted down the left and the right bundle branches. These serve like electrical wires that connect to the left and right ventricles. When the AV node fires, it makes them go off at the same time. A LBBB means that the signal does not reach the ventricles at exactly the same time, so the left ventricle will fire at a slightly different time. The result is a poorer pump. I hope this answered your question. If not, please feel free to contact me. Marlon.

Krista, June 5, 2000 - Hi there, I noticed a few messages concerning the dual chamber pacing device, also referred to as a biventricular pacemaker. I'm in the process of scheduling my own implantation of one, which is combined with a defibrillator. They are actively participating in the study at St. David's Hospital in Austin, Texas, and have done about 15 so far. Unfortunately, I would have to wait 3 months to participate in the study since I recently had a heart attack but they have another alternative which they refer to as an off-label device, which basically provides the same functions as the device in the study but which is composed of already-approved components. I have read several newspaper articles concerning the device and it seems that the results have been positive.
     I just wanted to know if anyone out there had received one yet and if so, how they were feeling? I'll be sure to let you know how I feel after mine is implanted.

Jon's June 5 reply to Krista's June 5, 2000 - Hi Krista, We'd love to hear your story! To everyone - if you get or are going to get a device implanted, go through heart transplant or a "chemical" stress test or any other heart failure-related procedure, I am interested in posting your story to one of my pages, even if I have to start a new page just for such real-life stories (such a page is already here for heart transplant - I need more stories there, guys!). It would be a big help to others facing such procedures. You guys make the site go - get me the info and I'll get it on the web - maybe not real fast <lol> but I'll get it there! It would be even better if you wrote some of down as you go along, getting ready for the procedure and right afterward, then w few days later, a week later, etcc. I'm not after cheerleading, just your real story - good or bad. Jon.

Danny H, June 5, 2000 - Hi all, My name is Danny and I live in southern Indiana. I had a major heart attack in July, 1998, followed by 5-way bypass. Two have failed so far and there is nowhere healthy enough on my heart to tie any more in. Ergo, I have dilated cardiomyopathy and CHF. My cardiologist says my only next step is a transplant.
     Now from what I understand, ¾ of the people on a waiting list die waiting. If you're lucky, then you have to survive the operation, then survive the recovery. Then, give up any fatty foods and salt, in addition to smoking and drinking alcohol (which I've already quit). After you figure in the pain involved, I guess I'm wondering, why would I want to live like that? My feelings about this are kind of negative, I'll admit. Maybe as I get closer to dying, I'll have a change of heart (not meant as a pun, but hey - it's not a bad one). People look at me rather strangely when I make jokes about heart problems and death but I tell 'em if I didn't joke about it, I'd get depressed and cry! Gimme some feedback, Danny.

Carol W's June 5 reply to Ginger's June 3, 2000 - Hi Ginger, Good luck with Lipitor. I took it for 2 months until my doc and I figured out that it was the cause of my severe diarrhea. Pravachol did the same. Mevacor seems to be the only one that works and doesn't give me any symptoms. Also watch out for pains and weakness in your legs. This can be a real serious symptom that will keep you from using any cholesterol lowering drug. Good luck, Carol.

Jack, June 6, 2000 - Hey guys, My nephew (age 15 or 16) was experiencing arrhythmia. They did the holter monitor and found that it happened only when he was at rest or sleeping. They did the stress test and found that under load, it performed perfectly. So the doc said, "Don't worry about it." Does that sound a little flaky to anyone except me? Jack.
Jon's note: sounds fishy to me

Barbara P J, June 6, 2000 - Hi, I was at my surgeon's office today getting a checkup on my pacemaker (implanted 4/27) and I slyly asked if they were doing any of the 3-lead implants. He kind of laughed and said I was reading the Internet. Then he added that it's still experimental and until a realiable study shows it will either improve the quality of life or improve the mortality rate, they will be sticking to the tried and true. It reminded me of several things in the past few years that was the "be-all for CM" that has now been discarded because the results just weren't there. I'm happy to say I have made a 180° turn with Tweaky (my name for the pacemaker) and my quality of life has improved. Between that and Coreg, I thank God daily for giving the medical field the ability to do the research needed to improve people's lives.

Judy S, June 6, 2000 - Hi Jon and All, In this morning's Oakland Press there is an articles about a company called Somanetics Corp, which is expanding its business to include a cardiac implant for patients with congestive heart failure. According to the article, "The Troy (Michigan) company acquired the exclusive worldwide license to CORrestore, an implant that restores normal function and size to enlarged, poorly functioning left ventricles." The article goes on to state, "The CORrestore greatly reduces the mortality rate for Class 3 and 4 patents, the most serious cases, and reduces the hospital re-admission rate to one-fifth or normal" Have you ever heard of this? It sure sounds very interesting. Blessings to all in the name of Christ, Judy.

Joe S' June 6 reply to Jon's June 5, 2000 - Hi Jon, Your answer to Phyllis sure answered tons of my questions. I never could figure out why the docs keep saying I'm so much better, then schedule me for a Persantine Thallium Scan and then say I will have to have major surgery in a few years. On my last trip they said I no longer have CHF, but another form of heart failure? Go figure. I told the doc I wanted the valve surgery so I could at least walk uphill one time in my life and he said the risk factor was too high. Thanks again for all your imput, Jon. I am convinced that everything I learned on this site has been the healing factor; that is, with a ton of prayer. Joe S.

Frank S' June 6 reply to Carol W's June 5, 2000 - Hi Carol, Thanks for the comment about the Lipitor type drugs. My cynicism tells me that there must have been a very attractive incentive for my doctor to push Lipitor. I did not want to take it but since your post, I believe that my severe leg weakness could be caused by this medicine. In a few weeks, I will post the results of my stopping this drug. People helping people, that's what it is all about. Later, Frank Smith.

Leland Y's June 6 reply to Carol W's June 5, 2000 - Hi, It is interesting reading everyone's responses to lipid lowering drugs. I am on 600mg gemfibrozil twice a day. This drug really does a number on my bowel constipation, until the fresh mango supply got more plentiful for the summer. Thank God for mangoes. Gemfibrozil was the choice, because my triglycerides were high, even tho' the LDL and HDLs were a little out of kilter. It seems that the carbohydrate levels are starting to even out better. My next FBS (hgbA1-c) will not be till July. I can't wait. Luv+salutations, Leland.

Beverly C, June 6, 2000 - Hi, I want to find out if my doctor is qualified to care for me. He is an interventional cardiologist. He was called in when I was in the ER for chest pain and he has continued to care for me after performing 2 caths. I went to your link that described different types of heart doctors and his type was not mentioned. My PCP says he is good. I also would like to know how I can get test results transcribed into English that I can really understand. I look up some words and I find things he did not mention. I want the whole story. I know there have been studies done regarding the potency of different brands of CoQ10. Could anyone direct me to the results? Thankls.

Jon's June 6 reply to Beverly C's June 6, 2000 - Hi Beverly, Interventional cardiologists aren't mentioned because they usually don't specialize in CHF patients. They are usually very skilled in what they do, which is procedures like caths, angioplasties, etc,... However, unless you get one who specializes in CHF patients, you might be better off seeing a cardiologist who does specialize in CHFers. Of course, if your primary CHF cause is CAD (coronary artery disease), you may be just as well off seeing your interventional cardiologist.
     Test results are one area where doctors stink! Period. We can try to help you with them but unless you are willing to corner your own doctor and sit him down and make him explain it to you until you really understand it, you may never get the full gist of those test results.
     About CoQ10, keep in mind that most of those "explanations" and "comparisons" were done by the supplement manufacturers themselves so claims made should be viewed in that light. Jon.

Jon, June 6, 2000 - Hi everyone, I never received any information about CHF support groups in southern California. Sorry. It seems that local CHF support groups are few and far between even now. Jon.

Lynn M's June 6 reply to Danny H's June 5, 2000 - Hi Danny, While I'm not faced with the transplant issue yet, I can respond about heart and death jokes. (by the way, your "change of heart" line made me laugh) We're going to have heart failure whether we laugh about it or not, so we may as well laugh and make the most of it. I say exactly the same thing you say when people look at me strangely for laughing about my heart disease. Hey, I believe in getting maximum mileage out of these things. Did you know that there are little known benefits to having heart disease, including CHF?
1) If you've had heart surgery, you have unusual tattoos to show off at the beach.
2) You can get out of doing almost anything you don't want to do ("I'm sorry, but I have a bad heart.")
3) Personal air-conditioning (the CHF and chills thing we've discussed here)
4) Always going to the head of the line in the ER
5) Female patients have a ready-made excuse to splurge at Victoria's Secret because you never know when you'll end up in the ER (can't have the nurses seeing tacky undies, now can we?)
6) Immediately deflating bill collectors and other annoyances by claiming they're giving you an angina attack (they're terrified you're going to sue)
     As far as I'm concerned, joking about my own death is also fair game. Lynn M, Princess of Rales.

John Len's June 6 reply to Lynn M's June 6, 2000 - Hi, Old Fred Sanford used to milk a lot of mileage out of his "It's the big one! I'm comin', Elizabeth" routine while clutching his chest. One evening while driving home and on a stretch with little traffic, I got caught by a yellow light and pushed the limit through it. Wouldn't you know, a cop caught my act and turned on his lights and motioned me around a corner out of traffic. Well, I started to get out but he told me to stay in the car. While he was approachin, I took out my nitro spray and used a couple of shots under my tongue. He comes up to me window and asks, "Do you have a drinking problem, buddy?" No, I say. "Then what's with the breath freshener spray?" he asks. I told him it wasn't breath spray. "Let me see it," he then tells me. I hand it to him and reads the label. Boy, did his attitude change?! He wanted to escort me to the hospital! I got off with a warning. It also helped to have handicapped plates on my auto. :-) John.

Suzy B, June 6, 2000 - Hi, I haven't posted in awhile but I am lurking in the background reading almost every day. I have idiopathic dilated cardiomyopathy. In August of 1999, class 3 CHF was discovered after a cath, which was done through my right arm, inside the elbow with no anethesia because they could not get in through my femoral arteries or find a vein; They were all too scarred from previous procedures and surgeries. After the cath, the doctor said I need to consider a transplant.
     In February of this year I had my dual-chamber pacer replaced with a single-chamber because both my atria are non-functioning. This is my third pacemaker. I continue to have problems with my heart and have been on Coumadin for 12 years due to blood clots from my a-fib. My EF is at 25%. I feel terrible all the time: tired, weak, short of breath, can't do stairs without hubby to boost me along the way. I am starting to retain fluids now. I am taking6.125mg Coreg twice daily, 5mg Zestril daily, 0.125mg Lanoxin daily, Coumadin as directed since my PT is always different each time, and Elavil and Baclofen for nerve pain due to damage from blood clot surgeries. Let's see, did I leave anything out? Probably.
     My heart failure nurse says I have to accept the fact that I am sick. I still try and do what I used to do before this all happened but it's hard and I don't want to admit that I can't beat this. Right now I am stable for the moment, thanks to Coreg but that can change in an instant, as we CHFers know. Hubby says that my denial is what keeps me going and maybe he's right. I'm just taking one day at a time now and enjoying each and every one of them. Thanks for listening, Suzy B.

Don's June 6 reply to Jon's June 6, 2000 - Hi Jon, Kaiser Permanente in Woodland Hills, California, has a support clinic for CHFers. I went 2 years ago when I was first diagnosed, at age 37. If you are under 55, be prepared that this is geared for your parents' generation. When I went, I received quite a few funny looks. I was even asked (twice) if I was in the right room. They do however, give you a lot of information on how to live with CHF. Ask a lot of questions. They tend to talk more about how to cope with CHF if you are older. They can relay some valuable information if you ask them to relate this to how you get through a day.

Frank S' June 6 reply to Jon's June 6, 2000 - Hi, I live in Southern California, 100 miles north of San Diego, which is where I am going on 6/26 to be evaluated by the CHF clinic at UCSD. If anyone in this area is looking for support group activity, perhaps a call to the clinic would provide some information. The phone number is 619-543-7751 and their web address is Everyone should look forward to a "hard hitting" report after I have completed my visit to their facility. Later, Frank.

Darlene's June 7 reply to Danny H's June 5, 2000 - Hi Danny and All, Your medical history is very similar to mine. I experienced a heart attack August 3rd, with throat and jaw pain. I barely made it to the ER, where I passed out, was resuscitated by ER staff and transferred to the Cardiac Care Unit. I was visited by a heart surgeon who advised bypass using my radial artery (arm) rather than saphenous (leg), since apparently studies are proving that radial bypasses remain open longer. I had bypass surgery on October 12th. On the second day postop, when getting up to sit in a chair, I "blew" one of my grafts and ended up in the ICU for the weekend. I survived and was eventually discharged when, one week later on October 31st, I had another heart attack and was hospitalized for 2 weeks. The surgeon believed that another graft "blew" so apparently I have only 3 good ones left!
     I've been on Coumadin ever since with biweekly blood tests to check on PT/INR. Now that I have CHF, I wonder if everyone else has good days and bad days, like I do. I do contract medical transcription at home so I felt that I should be able to continue working, but with no added pressure. Fortunately, I have found someone who is willing to have me do his work under these circumstances. Therefore I have not applied for my CPP Disability (I'm Canadian) benefits even though I was advised to do so by my cardiologist. I am a baby boomer and refuse to give in to my heart disease, at least for the moment. I feel that I'm still strong enough to be supporting myself and making a contribution to society, albeit a small one! Ironically, I worked for a cardiologist for 12 years after which I resigned because of too much stress. Eleven months later I had my heart attack. I also have an anxiety disorder, which gives me "panic attacks" that affect my heart. This gets scary under the circumstances. My GP prescribed Paxil, which made me feel like a zombie; like my head was not connected to the rest of me. All I wanted to do, or was capable of doing, was vegetating!
     I am also taking the maximum dose of Lipitor (80 mg), which may have to be discontinued for something else, since it does not seem to be doing the trick. I wonder whether something else is going on that my GP may be missing, like a thyroid condition, menopause, etc,... Jon, you were right about the research. I tried to look up CHF under the Health category and got a lot of gobbledy-gook or CME programs for wanna-be doctors! Your web site is great. Congratulations for getting a good idea off the ground!
Jon's note: Be sure to read The Manual all the way through

Bill D's June 7 reply to Judy S' June 6, 2000 - Hi Judy, I was able to bring up the Somanetics home page but it hasn't a thing about CORrestore. Then I put in CORrestore and CORestore but my search engines didn't find anything. You must be the first person to hear about it. Could you call the newspaper and find out more? Bill D.

Taavi K's June 7 reply to Danny H's June 5, 2000 - Hi Danny, Is a transplant worth it? It depends. Do you have any reasons to live, such as family and friends? Do you like to see the sun come up? Look at the grass from the green side? Hmm, this is getting heavy, but there certainly is life - and it can be a good life, post transplant.
     I had my transplant 3 years ago and would do it again in a heartbeat. I don't know where that death rate number of 3/4 of the people comes from. It looks to be more like 10%. Try wading through the numbers at UNOS. As far as fatty foods and salt, you had better have given them up already. With a little planning and the occasional treat, it works just fine. My current cholesterol is now 120 (down from 239), and I certainly don't feel deprived in what I eat
     Pain was not a problem with my transplant. Bypasses are more painful. You might want to read my whole story here to see just what I went through. I certainly agree on the need for humor. Our heart transplant group once had to change meeting rooms because the people in the surrounding offices and clinics kept complaining about how much noise we made laughing. Taavi. kubit002@tc.umn.eddu

Sandi M's June 7 reply to Danny H's June 5, 2000 - Hiya Danny, I am a little confused about your outlook on transplants. If you have CHF, you should already be on a low sodium, low fat diet. As for pain, isn't it painful now when you feel like you are going to cough up a lung just because you slid off your 3 pillows in your sleep. Isn't it painful when just trying to breathe wears you out like you had just run a marathon? And dying from it? Some of us will die without it. Waiting for a heart? I am sick of waiting for the one I have to do anything so why not wait for a new one? I enjoyed your sense of humor and agree that we have to laugh about it or it would be just tooooo depressing to deal with.
     Also, John, I tried Zocor but even on my strict diet that I am very faithful to, it only got my cholesterol down to 302. I have a problem with my body making way too much cholesterol. Lipitor is the only one that seems to help. I take 80mg of Lipotor and one gram of Colestid, and have my cholesterol down to 278. My husband takes Zocor and it works great for him with no side effects. Wishing everyone a good day, Sandi. chefal@bellsouth

Terry P's June 7 reply to Lynn M's June 6, 2000 - How to go, Lynn, Humor really is the best medicine! Two months out of the hospital my wife left me and my 3 kids. Visiting work one day, I told the boss, "'Luckily I don't have to worry about hearing that old cliche: At least you have your health." It cracked everybody up and made me feel much better.

Lynn M's June 7 reply to Suzy B's June 6, 2000 - Hi Suzy, I do understand what you're going through in terms of the difficulty of accepting the fact that you're sick. Just last week, I actually sat here and told myself, "Oh, I don't have a problem." This thought occurred while sitting at the computer with a fan blowing directly on me and a bottle of nitro right in front of me. Then Saturday I went out to lunch with my daughter and almost passed out just from having walked in the sun from the car directly into the air-conditioned restaurant.
     Then it went from "I don't have a problem" to "Houston, we have a problem!" <g> Anyway, all of that was to say that I have difficulty accepting the fact that I'm sick too, despite a doctor having told me the day they found my EF was down to 24%, "You're a very sick woman." Are you talking to me?! I looked at my 71 year old mom, then realized she wasn't the one who just had the echocardiogram and we were the only 2 women in the room. :-)
     When I start feeling down about not being able to clean the house any more or cook anything more ambitious than a frozen microwave dinner, I remind myself of the things that I can still do on "good" days, even if it's just sitting at my computer or at my easel, drawing (though sometimes I'm too exhausted to do even that). Now that I'm in the class 3B/4 zone, I'm in a nearly constant panic that I must complete this or that project to leave something of myself behind for posterity; a rather presumptuous ambition, I admit.
     So those days that I spend sprawled on the recliner or sofa unable to do anything seem to be total wastes of time. It can be extremely frustrating but, like you, I try to take it a day at a time, being thankful for the "good" days and trying to learn acceptance of the bad ones. You are in my prayers, Lynn M.

Kathryn's June 7 reply to Don's June 6, 2000 - Hi Don, My son who is 26, was diagnosed with CHF in August of 1999. He is doing fine right now with all the usual medication routines and dietary restrictions. Your post reminded me of when we went to a cardiac support group at Portland Adventist Hospital in Portland, Oregon, where we live. It was like a 12 step meeting and as we went around the room (there wasn't anyone there younger than 60, except me and my son), as they came around the room to make introductions and tell the stories of what brought everyone there, you should've seen the jaws drop. Of course everyone thought I was the one with CHF, not this very large, healthy looking 26 year old. I wish I'd had a video camera!
     It helped my son a lot to be in a support group for the 6 weeks or so that it was available. After the initial surprise, it didn't matter that there was such a big age difference. Heart disease is heart disease. The common thread was there and yes, we all had some big laughs. Ya gotta laugh and make good memories while you can. Those good memories can carry you through some of the not so good ones. Keep smiling! It makes 'em wonder what you've been up to!

Lynn M's June 7 reply to Darlene's June 7, 2000 - Hi Darlene, Wow! And I thought I had some tales from the "CABG patch" to tell! You've got me beat. Anyway, they used my radial artery as a graft in my first CABG and it never dilated as it was supposed to do. So they had to bypass it again with a saphenous graft in my second CABG, from which I almost died. Just before the second CABG, I told the surgeon, "You're not touching the other radial artery." He told me not to worry because he said that they had quite a few problems in women where radial artery grafts did not dilate, so they don't do radial artery grafts on women at that particular hospital any more. Your grafts actually blew?! Yikes!
     Like you, I'm another baby boomer who's found it hard to accept having heart disease. See my post today to Suzy. I'm only 50 now and started having heart attacks at age 47. At the time, I was running a home business indexing books too. I had to eventually shut my business down because creating indexes is a very high stress occupation due to the constant deadline presssures and strings of all-nighters. Sitting up all night eating nitro like candy, with your legs swelling up like piano legs as I was doing is not recommended. Plus, it wasn't helpful that I'm always in the hospital every few months. However, one of the "benefits" of heart disease is that heart attacks, unstable angina, CABGs, pulmonary edema, etc,..., provide the best possible excuse for missing deadlines. The deadline suddenly extends into the far future and they send you flowers instead. <g> Your current situation with doing contract medical transcription under no pressure sounds like it could really work for you! I truly wish you success, Lynn M.

Lynn M's June 7 reply to John Len's June 6, 2000 - Hi John, ROFL! Perhaps we should christen these techniques "The Sanford Maneuver," getting the additional smileage of baffling anyone who doesn't know what we're referring to. <g> Lynn M (writing from the Cardiac Lunatic Fringe).

Jan S' June 7 reply to Suzy B's June 6, 2000 - Hi Suzy, What did you mean when you said both atria are non-functioning? The doctors could not attach a lead to the tissue in my atria because of fibrosis of my heart tissue. I went to an electrophysiologist and they attached the atrial lead to my coronary sinus (vein or artery, I forget which). Has anyone else out there received a coronary sinus lead for their atrial lead? Jan.

Randy's June 7 reply to Danny H's June 6, 2000 - Hi, I had a transplant when I was 21. At the time, I was very skeptical. Transplants sounded so major to me. I thought I'd be like a veggie in a wheelchair but it's not like that at all. Since my transplant in 1989 I've become married to a very beautiflu woman, and have a son and a daughter now too. If you'd rather be at peace with youself in a better place, don't get the transplant. Let someone who wants to live get the heart instead. It's a lifelong commitment to receive a heart and you must take care of yourself. The pain isn't bad at all; only about a week of it and you get morphine the entire time, then Percocet, then Vicodin. As the pain becomes less, so do the meds. Most of my pain was in my back, from them prying open my chest, which puts pressure on your spinal chord, so any open heart surgery would be just as painful. You do have to take immunosuppressive drugs that have irritating side effects but it's better than having heart attacks, and you get all your energy back, along with the ability to become active again. It's well worth the tradeoff but if you don't have the will to live, let someone who does get the chance of getting a new heart. You can't go into this halfheartedly, you can't give up, and there is no turning back once you do it, but the results are nothing short of miraculous. Randy.

Jon, June 7, 2000 - Hi everyone, I wasn't gonna but due to the fact that there really are two sides to the story, I guess I will - talk about heart transplant in a less than favorable light.

  1. The horror stories of heart recipients who die miserable deaths after their transplant are never talked about by the medical community and are completely ignored by the press. Most of the recipients in this category - a fairly small percentage of heart recipients in general - die within 6 months to a year after their surgery and therefore their stories are very hard to find. They do exist.
  2. Hearts are not "matched" the same way kidneys are matched - there isn't time. Only a very rough match can be done in the few hours a donor heart will survive outside a body. Hearts and lungs only stay viable about 4 hours, 6 at most. Therefore the chances of you having to take very strong doses of immunosuppressant drugs - with the resulting worse side effects - is very real.
  3. According to HHS, in some parts of the country over 40% of people waiting for a donor heart die while on the list - this trend is expected to get worse - fast.
  4. Post-transplant meds are much more complex for some patients than for others - due to that dicey organ "matching" I mentioned. Failure to take post-transplant meds properly is the third leading cause of transplant failure, according to at least 2 major USA heart transplant centers.
  5. Cyclosporin use substantially increases risk of cancer. Cyclosporin is still the mainstay drug for fighting organ rejection after transplant.
  6. Skin cancers are extremely common in transplant recipients.
  7. Studies have shown that up to 75% of patients develop serious coronary artery disease within 5 years after heart transplant. For patients surviving their first year after transplant, CAD is the leading cause of death.
  8. Amost all heart recipients have seriously high blood pressure after receiving their "new" heart, requiring medication.
  9. Almost 100% of the people who have heart transplants develop osteopenia, or weakening of the bones, and half these people will develop osteoporosis, a serious disease that can cause spontaneous fractures.

     I could go on but my point is probably made. The point is that heart transplant is the luck of the draw. If you get a really good organ match, you will feel much better and your meds will not be too much of a burden. You might even get to stop taking prednisone entirely. You will live pretty well and enjoy yourself for quite a long time. If you get a lousy match, you will be miserable, die rather soon and enjoy your short remaining life span not at all. If you get a match somewhere in between - as most people do - you'll feel better and live longer, but how much is hard to say. It will be an improvement, though; That's a safe bet. So again, my point is that it is the luck of the draw. You have to walk into the whole setup ready to take the cards you are dealt and play them the best you can - good, bad or in between.
     As Randy rightly points out, it's not something you can go into half-heartedly but I do disagree with him that refusal to get in line for a heart means you don't want to live. Whether to get a donor heart or not is a complex decision and very personal. Regardless of his choice, every person's choice should be respected. I myself have turned down transplant once already when my CHF doc thought it was necessary to save my life. I was moved by God's Holy Spirit to decline and here I sit, almost 3 years later. I plan to follow His guidance should it come up again, either way.
     The lifestyle changes are considerably tighter for transplant recipients than for CHFers. Sodium, fat, dietary cholesterol and other aspects of food and drink are more restricted and there should be no cheating as there can be with us CHFers. We cheat on sodium intake and pop another Lasix (come on, we've all done it) but transplant recipients can't just pop a pill and solve anything. You can't forget to take your meds after transplant without risking a far more serious problem, possibly even life-threatening, after missing just one dose. In short, it is a game played with much tighter rules and much higher penalties.
     So why do it? Well, why do you play the lottery? By the time you get on that transplant list finally, odds are you're going to die soon anyway, so why not take the chance that you'll get a good match and have a very good life afterward? That seems like a pretty good bet to me. That's what it boils down to. Of course, I've never bought a lottery ticket, either. <lol> Jon.

Sheryl C, June 7, 2000 - Hi, I have CHF and 3 times now I have awakened in the middle of the night with intense shivering and chills. Has anyone else experienced this?

Tony, June 7, 2000 - Hello, I am inquiring to anyone that has bracyotherapy on their heart (radiation angioplasty), which is a procedure to prevent restenosis (recurring blockage even after a stent procedure has already been done). I would like to know if anyone has had this procedure actually done on them already? Thank you.

Judy M, June 7, 2000 - Hi everyone, I would like some information. My cardiologist want me to have a MUGA test. He said, "You just stand there and it takes pictures of your heart." I've gotten to the point in my life where I don't believe everything I hear; especially doctors telling me about tests. Just what is a MUGA? Do they inject something radioactive or otherwise into you? Is there a vile-tasting drink to swallow? How long does the test usually take? I have gotten up to 12.5mg of Coreg twice a day plus a lot of other medications. The doctor said he wouldn't raise my dose of Coreg because it still makes me tired. Thanks for any info, Judy M.

Jon's June 7 reply to Judy M's June 7, 2000 - Howdy-doo Judy, When this is the first page you hit on my site, it's easy to overlook all the other "stuff." :-) Here are some pages that will help all of you who haven't had time to explore, find some useful info on this mess I call a web site:

That's a good start, anyway. If you want a different "take" on the MUGA, read this and this! Jon.

Brenda C's June 8 reply to Suzy B's June 6, 2000 - Hi Suzy, Lynn, Jon, et al, I understand what you are going through too, just as so many others. I finished my Master's degree in psychology in 1998 and started working as an in-home counselor with children and adolescents who had severe behavior and emotional problems. It was an area I had always wanted to work in and I loved what I did. Well, I was fortunate to be able to continue working until this February, but I have been hospitalized 4 times since then with CHF, as well as renal hypertension.
     I had just gotten out of the hospital the last time only to find out that I no longer had a job because my emergency family medical leave was up and I wasn't able to return to work. I cried for almost a week after I found out although my doctors had already told me that I could not return to work. Despite what they said, I was bound and determined to go back to work. "My kids" needed me and I really needed them. Anyway, I guess it was a mixed blessing in disguise because it forced me to face some really hard realities.
     Left with no other alternative, I applied for SSI and SSD. I could not apply for unemployment as suggested by the head honcho because the doctors hadn't released me. On my "good days" I can almost forget that I have this problem and will tackle almost anything. However, I soon realize that I can't do whatever I have started. I just get so worn out. I have always pushed beyond my limits but I have just started to learn that I can no longer do that. Unlike my friends and family members, when I run out of energy I have no reserve to fall back on. Sitting down and resting for 15 or 30 minutes doesn't recharge my battery any at all and perhaps this is the hardest.
     Yes, I agree that humor is sometimes the best medicine of all or at least that is what I learned while working with my kids. If we can laugh at not only ourselves but also the situation, it makes coping a whole easier. For example, during my first hospital stay, I was transferred from one hospital to another one that was about sixty miles away. I was on 5 liters of oxygen and sitting straight up when they loaded me in the ambulance. The ambulance takes off with its sirens and lights going full blast as one of the attendents sat by my side reassuring me that I was going to be alright. However, about 15 miles down the road the ambulance dies and we coasted into a gas station in a very small rural town. Of course as my luck would have it, the engine refused to start again after we came to a complete stop so the driver radioed in to the County's main station to report the problem.
     Again, my luck held true and there were no other ambulances available. The driver then called to the central garage and reported that this was an extreme emergency and they had better find another ambulance to transport me. Well, they did find one, however it was an older model that I think must have doubled as a hearse at one time or another. Oh, it had lights and sirens but my stretcher would not lock into rails as it should. The quick thinking of either the driver or attendant resolved the problem by purchasing a couple of those stretch truck tie downs from the nearby convenience store to secure me.
     After transferring me from the broken-down ambulance to the other one, gown tail flapping in the wind and all, off we race to the hospital again. However, about halfway there I noticed the back doors of this old ambulance/hearse seem not to close properly and I started to laugh, for in my mind I could just see the doors opening and me on a stretcher trailing behind the speeding ambulance. Of course the monitor started to go crazy and the attendant started shouting for the driver to pull over so she could use the paddles to convert me, which only made me laugh harder. I was laughing so hard I couldn't talk or breathe. Finally, I pointed to the doors and got a few words out to make her understand what was happening.
     When we got to the hospital, although I was in pain I was still laughing. I told the story to the ICU nurses and they cracked up too. After hearing the story, they called it a Brenda Story because it could only happen to me. I think someday I will write a book and call it "Brenda Stories." Maybe something good has come out of all of this after all. Oh by the way, the next time I was transported by ambulance I had the same driver and attendant. Even as sick as I was at the time, we still laughed about it all. I guess they will never forget me or the incident because it got back to their headquarters and they haven't lived it down yet. God bless you Suzy, Lynn, et al. Brenda C.

Jack's June 8 reply to Jon's June 7, 2000 - Hey, You don't go into a heart transplant half-heartedly? <LOL>
Jon's note: <lol>

Suzy B's June 8 reply to Jan S' June 7, 2000 - Hi Jan, The way I understood my cardiologist, who is an electrophysiologist and implanted 2 of my 3 pacers, was that he could get no response from an atrial lead no matter how it was adjusted. He made the decision to turn the atrial lead off. This decision was not made lightly; It happened after 8 years of on and off episodes of response, then finally none. I was left with a huge area of scar tissue on the left side where it was removed. It actually feels like a pacer is still there. Stitches wouldn't hold inside either; wires and plastic caps are still inside the old site. Today my atria are still the same - no change. I assume that is why my blood must be kept very thin, because I throw clots like crazy. A new pacer was implanted on the other side of my chest. After these past 10 years of surgeries, I've learned that anything can happen and usually does. Suzy B.

Elaine, June 8, 2000 - Hi all, I'm new here. I'm fighting CHF again and it seems the meds are causing problems with my potassium levels. The doctor called last night and said it is down to 2.7. I'm taking 20mEq K-dur three times a day as it is and also Aldactone and Lasix. My question is, "What can I do for these awful muscle spasms till my levels come back up?" I'm having repeat labs tomorrow but right now my muscles are screaming at me! The doc said I would just have to wait it out and that I was on enough K-dur and would just have to wait till it built back up in my system. Thanks for any tips.

Joe S, June 8, 2000 - Hi Jon, I have a big question. When I asked the doc why I couldn't have my valve replaced now, he said the risk was too great. I told him I would like sometime in my long life to be able to walk up a hill or bend over without getting dizzy. All he said is I have to wait until I'm 70. I sort of think it has something to do with insurance. Whatcha think? Joe S.

Jon's June 8 reply to Joe S' June 8, 2000 - Hi Joe, I'd say it's time for a second and third opinion from doctors not affiliated with him or his practice. Jon.

Lynn M's June 8 reply to Jon's June 7, 2000 - Hi, I want to chime in here in support of what Jon said about rejecting the heart transplant option not being the same as rejecting life. A transplant is not an option for me by the way, because I have diabetes. However, I have been accused of "giving up" when after 5 hospitalizations in 5 months, I said "No more hospitalizations. Enough is enough." Also, my mother claims that her sister "gave up" when she told her doctor no more new treatments. My aunt later died of CHF. So, this is something we heart patients are likely to hear from others if we refuse a particular treatment for whatever reason.
     What people who make this accusation don't understand is that by the time you are in an advanced state of heart disease, you may have had too many experiences of being powerless and out of control as you are in the hospital, having painful and uncomfortable things done to you repeatedly. It then becomes an issue for some of us of quality of life versus quantity of life. The emotional degradation of pleading to have central lines started instead of undergoing multiple fruitless "vein hunts" and being ignored or refused is something I no longer want to experience. Having to throw screaming, crying tantrums in the hospital (including pitching things at the walls) to get their attention and to have things done my way is not quality of life, in my opinion.
     This is not the same thing as rejecting life. I for one still want to live but I want it to be on my terms, not those of someone who thinks something or other would be "good" for me. I hope this gives some comfort to others who may be tired of it all, including of hearing accusations that they've "given up." If anyone is truly so tired of it all that they want to be allowed to pass on, that is a valid choice too. As they say, unless you've walked a mile in someone's moccasins, you can't judge them. (or something like that.) Lynn.

Frank S' June 8 reply to Jon's June 7, 2000 - Dear Jon, Your post on heart transplant is just what all of us need to know. My guess is that there are but a few that feel "good" about the transplantation ordeal. The will to live is very subjective and personally, I'm pushing for a permanent axial-flow assist device. The way the good Lord explained it to me, by the time my heart is in much worse shape than now, the axial-flow device will have most of the bugs removed. Ciao for now, Frank.

Jon's June 8 reply to Frank S' June 8, 2000 - Hi Frank, This really isn't a reply to your message but it fits best here. ;-) A lot of people think I am dead-set (Jack's gonna have fun with that one <g>) against it but I am most emphatically not against it! It's actually a pretty good option for end-stage CHFers. However, I am extremely riled up about the way the medical community and the media refuse to give us all the facts about the process and its possible results when it is such a life-altering decision for us. We should be given all the data and then allowed to make the choice or not. I may go for it next time, I just don't know. I do know that I will now make an informed decision either way. I'd like to thank once again those who sent me copies of the heart transplant program manuals from their transplant evaluations, on which I based much of my transplant pages. I could not have done it without you, since the medical community refuses to release the down side of transplant to anyone.
     One more comment on "rejecting life" or "giving up" - Only true Christians will understand, but I quote Paul: "For to me, to live is Christ and to die is gain." Dying is not an end, so why should I flee it blindly? Jon.

Beverly C, June 8, 2000 - Lynn Moncrief, please e-mail me with your phone number or new e-mail address. My attempts to e-mail you have been returned as undeliverable due to permanent error. Thanks, Beverly C.

Suzy B's June 8 reply to Jon's June 7, 2000 - Hi Jon, When I read your post I felt like you had taken the words right out of my mouth. I have decided not to place myself on the "list." This did not come easy. I did a lot of soul searching and then just slept on it for a bit. I had a dream that this was not the route for me and my dreams usually speak for themselves. I believe that God has another plan for me. I don't know what it is but I am willing to just let Him handle it. I continue to take my meds as prescribed and do the best I can for me but after all, it is up to Him what happens. All the MDs in the world can't change what is supposed to be. My family thinks I'm nuts but that's ok. I feel it is the right decision for me.
     I don't have suicidal thoughts or tendencies or anything like that; just the opposite. I am optimistic. My son is 24 and engaged to be married soon and I am looking forward to grandchildren someday. I have just learned to take one day at a time and savor every one of them. I listen to my doctors but I listen to my heart more. I have bad days too, like everyone else, but I just ask Him to give me the strength to get through it and He does. That's the way I feel about it, Suzy B.

Dan C, June 8, 2000 - Hi, This is my first try at questions. I was diagnosed with idiopathic dilated cardiomyopathy in November, 1999, with an ejection fraction of 19%. I am 53 years young with no prior history of problems. I am a non-smoker and non-drinker. I am taking Prinivil (ACE Inhibitor), Coreg (beta blocker), Lasix (diuretic), Lipitor (cholestoral reducer), and Aldactone (RALES Study addition). I have some edema around my ankles and can make slight "dimples" in the area around my shins.
     My question is, how do I know if I am retaining fluid around my waist or if I am simply gaining weight due to less physical activity? My second question has to do with claudication. The Internet searches I have done say that improvement can be obtained by taking L-carnitine. All the studies were done by people using Propionyl-L-Carnitine but I can find none around San Antonio, and no one seems to have ever heard of it. L-Carnitine in the tartrate form is available. Is there a difference worth noting?

Jon's June 8 reply to Dan C's June 8, 2000 - Hiya Dan, You can weigh yourself every morning in just your skin at the same time each day. If you have increased 2 pounds in 24 hours, you may be starting to retain fluid and should consider taking an extra dose of diuretic if your doctor has okayed that.
     There is a difference between the 2 forms of carnitine you mention. Have you written any study authors to see if they can give you a mail-order source for the PLC? Jon.

Randy B's June 9 reply to Jon's June 7, 2000 - Hi, Well, I was a little offended with the first letter I responded to but I agree it is an individual choice. When a doctor tells you that you have 6 months to a year to live and that you need a transplant, you might live 5 to 10 more years before you really get sick. I have to be kind of biased since I was only 20 when I got sick in May of 1989 and by July, I was coughing up blood; lots of blood out of my lungs due to my weakened heart. I didn't want a transplant because I thought I'd get better on my own. As time went by, I ended up in the hospital in September and got even worse. I could smell death, literally, in my nose. My skin was slowly dying. I'd look in the mirror and my eyes were yellow and so were my veins, in addition to being collapsed. I was 6 feet tall and weighed 132 lbs and was getting Lasix injections 3 times a day to help drain the fluid out of my lungs. Finally in October I realized I was going to die and I asked my doctor when was I getting out of the hospital. He replied, "As soon as you get the transplant."
     I gave in and allowed them to put me on the transplant list. Day by day I grew weaker and sicker. CHF can be a horrible way to die, so slow. Fifteen days later I got a new heart. When I woke up 2 days later I felt great. When they took out the respirator, I coughed and there was no trace of blood. I was so happy.
     Since then I've had my share of side effects, hospitalization, sickness and operations. I was weaned off prednisone after 7 years. I have weakened bones and avascular necrosis in both of my knees. I did have to give up playing on my competitive indoor soccer team and my tournament softball team but I still ride my mouintain bike, golf, swim, and fish all the time as well as work as a optometric technician 30 hours a week. I would much rather deal with all my medical problems than be worm food. I consider every day since 10/21/89 pure gravy, living on borrowed time. Even if I die of cancer, rejection or coronary artery disease, it will be better than having kicked it 10 1/2 years ago, without ever being married or having any kids. My life has truly been wonderful.
     I do know the horror stories related to transplants. I had a fellow heart recipient who died a year after his transplant of hepatitis B that he got from his donor heart. Another friend died of rejection due to the fact that he couldn't afford his medications so he just stopped taking them. I also had a friend who died of cancer and the doctors couldn't do a thing, due to the fact he was immunosuppressed. All in all, it has had its scary moments but I've fought through it all and survived, and I am happy. It's a personal and individual decision but transplant can provide a happy and productive lifestyle for those who are willing to deal with the problems that come with it. Randy.
Jon's note: If you get time (I know it takes a lot of time), I'd love to put your story up on the transplant stories section

Jon, June 9, 2000 - Hi everyone, Well, my system now has a top of the line brand-new motherboard. It is much happier, so I am happier as well. <g> I may need a new CDRW drive as well but the outbound (in home service) tech is very nice, very skilled and on the ball. I owe this to you guys, literally. I am positive it was your out pouring of support for me when Comp USA PC tried to ignore my system problems that got this fixed and assured me of proper service. Thank you, thank you, thank you! It is so much easier using a pooter that likes pooting! Jon.

Shawn, June 9, 2000 - Hi Jon, I haven't been back to your wonderful site for awhile so I'm not sure if anyone has discussed buying drugs in Canada. I live close to the border so I was able to do this. I've had cardiomyopathy for almost 5 years. My health insurance pays the first $1,250 of my yearly drug costs, which gets me through about 3 months. After that, I asked my doctors to give me one-year prescriptions for my meds. I took these to a clinic at the border near Vancouver, British Columbia and got new prescriptions from a Canadian doctor at a cost of $28 US. We went to a nearby pharmacy and spent about $1,100 US for the same medication that would have cost about $2,200 in the US!
     Next time I'll call ahead because the pharmacy didn't have enough on hand to fill 12 months worth on every prescription or we would have saved even more! I wanted to spread the word so others can save a significant amount toward outrageous drug costs. Thanks, Shawn.
Jon's note: This was an e-mail to me rather than a post so I am withholding the e-mail address

Sandi M's June 9 reply to Jon's June 7, 2000 - Hi Jon, What more can I say than thank you for your honesty. I am sure it would be much easier for you to sugar coat everything that we have to go through. Unfair to you, but true you have become the father of this big family we have all become. We all look to you for answers. That is unfair of us to put such a burden on you but you always seem to come through. Your post on transplant was very to the point and fair. I only wish doctors could have your ability to talk so fairly about both sides. Thank you again and I hope you have a good weekend. Sandi.

Frank S' Jun 9 reply to Suzy B's June 8, 2000 - Hi Suzy, Your brilliant approach to what lies ahead is, thankfully, the way I feel. If the family and friends can't cope, then all we can do is pray for them to become as enlightened as we are. Later, Frank.

Tom W's June 9 reply to Lynn M's June 8, 2000 - Hi Lynn, I agree with you totally. It is the quality of my remaining life span that is important to me, not the quantity. The next time I go to the hospital I plan on being unconscious or delirious. I have no plans of going of my on free will. I suspect that I will pass if the opportunity arises for a new heart. I am certain that the place I am headed is a much better one. I hope ya'll have a great weekend.

Jennifer W, June 9, 2000 - Hi, I could really use some input, please! Here's my problem: I have severe asthma and CHF. I also have hepatitis C. My meds are:

     I would say that I have gained about 90 lbs within the last year. I have a very hard time just taking a shower, cooking myself something to eat, and forget housecleaning. I do try. I find it extremely hard to bend down to pick something up off the floor.
     My question is, "Are there any suggestions as to how I can build my endurance to simple physical activities" You know, like the ones I just mentioned. I am feeling so helpless and really have no help. That's not true; I do have someone who will shop for me, take me to get my meds or to the doctor's office. I'm a 44 year old mother of 3. My 20 year old works about 50 hours a week and walks to work at that. He helps me with the bills and yard but I am having a real hard time being this helpless. Thanks, Jennifer.

Jack's June 11 reply to Shawn's June 9, 2000 - Hey guys, Canada isn't the only cheap place for prescriptions. Mexico is a good place too and they are usually cheaper than Canada. In some of the smaller towns a doctor owns the pharmacy and won't even charge for an office visit to write your prescriptions. So you folks close to the other border have a boon also.

Jim T, June 11, 2000 - Hi, I have been having bad depression. If I overdo it, I stop doing whatever I am doing (not much) and sit down and put my feet up, and it goes away in about 30 minutes. I am taking 50mg Zoloft twice a day and that works most of the time. Does anyone else have this happening to them and what do you do about it? This is the first time I have ever posted but want you to know how much these posts have helped me get through each day. I don't miss checking them each day! I have been doing this for almost 2½ years so you folks are like old friends. I am really thankful that Jon felt led to put all these pages online. Thank you and God bless you all!

Jim, June 11, 2000 - Hi, What's the scoop on the muscle wrap procedure? Has anybody out there had it? Does it work? How soon after being diagnosed with CHF does someone have this procedure? I went to the ER at my local hospital on May 5 and was transferred immediately to Yale New Haven Hospital; the best thing that ever happened! Things didn't look too good at first. They did a transplant work-up. Luckily however, meds started to work. Before discharge I had a stress test and barely made it off the transplant list. My first appointment at Yale since being discharged is on Monday and I want to be armed with as much info as possible so I can ask lots of questions. Thanks, Jim. (By the way, any NASCAR fans out there?)

Jon's June 11 reply to Jim's June 11, 2000 - Hi Jim, Cardiomyoplasty has had a rough time for several reasons. Last time I checked with Marc Silver about it, ongoing trials were having a lot of trouble recruiting enough patients to meet goals. It seems that - like so many other procedures for CHF - it really only helps a handful CHFers and does nothing for the rest. A more complete explanation of the procedure can be found here. Jon.

Mike Long, June 11, 2000 - Hi, I just have to ask if there is anyone who has been told they should get a pacemaker and they decided against getting it. Also, what is the difference between an MD and a DO?

Kathy, June 11, 2000 - Hi, I have a question for anyone out there. Does CoQ10 have any affect on potassium or Coumadin levels in your blood?
     Also, I take 100mg CoQ10 daily. I am 5 feet tall and weigh 110 pounds. I haven't told my doctor that I'm taking it because he would just tell me it's a rip-off. How much does anyone else take that's about my size?

Terry T, June 11, 2000 - Hi, I'm inquiring if anyone here is taking a beta-blocker other than Coreg. I was on Coreg for 3 years, changed providers and was switched to atenolol. Terry.

Shirley, June 11, 2000 - Hi, I haven't posted in a long time but have a question I hope one or more of you can answer. As a quick update on who I am and my condition because it really has been quite awhile since I posted, I'm 53, have DCM and CHF as a result of heart damage from high-dose chemotherapy treatment for acute leukemia. I have an EF that hangs out at around 38 to 40, although another echo is scheduled in 10 days because I've been feeling rather poorly after many months of feeling rather well!
     My question is regarding Coreg. My doctor recently increased my dose from 12.5mg twice a day to 15.75mg twice a day; not a huge increase yet I feel completely wiped out! Is that normal or is perhaps something else going on? The only other meds I take for my heart condition are Coumadin (I had 2 small strokes 2 years ago) and CoQ10. I take Synthroid 'cause the chemo damaged my thyroid and estrogen because it brought on the joys of menopause. I also have chemo-induced Lupus but don't take any meds for that yet, since the symptoms are not yet severe enough to warrant it and I really, really don't want to take steroids unless absolutely necessary!
     So again, my question is, "Could such a small up-titration of Coreg knock me down like this?" I am normally an active person but for the last 2 weeks, I have been hard-pressed to get off the couch, and I really don't like this. Shirley, AML 1991, DCM & CHF 1997, Lupus 1999.

Walter K, June 11, 2000 - Hello, Based on my experience, I strongly suggest that anyone seeing a new doc and having records transferred try to transfer them by hand so they can see what is in them, rather than having the office fax them.
     In April I switched from one cardiologist to another. The former had me on Coreg but my BP went way up. I think because he was reducing my ACE, using the Coreg as a replacement for it rather than as a supplement to it. Anyway, in the records he sent to my new doc there was no mention that he had ever had me on Coreg at all. Now I am finally going to a CHF clinic (on June 21) and I have all the records from my new cardiologist to take with me and I am astounded. In my "Medical History" he says I have no family history of cardiac problems. I told him my father had severe CHF. He says I denied hypertension, when in fact I told him I had high BP for years, though it was being controlled by meds. There are many other errors, including in his report of my Coreg experience (which was based solely on what I had told him) no mention that my ACE inhibitor had been reduced by my former doc - which I did tell him - merely saying essentially that Coreg did not work for me. He says I have had "multiple cardiologists" (which sounds like I run to a new one every month) when in fact I have had 2 - including him - over the last 7 years.
     Every time I see this doc I have to bring all my meds, which I gather is fairly common, so they can see for themselves what I am on. In his records, my meds are listed but they have the wrong dose for one and misspelled another so badly it is unrecognizable. I could list a bunch of other errors but I think the ones above are enough to get the idea across: Check your records if at all possible! I don't know how common errors like this are. Does anyone else have a similar story? I have been corresponding with Roz S who has posted here and she suggested I post this as a warning to others. I do hope the CHF clinic will keep better track of things.

Frank S' June 11 reply to Jim T's June 11, 2000 - Hi Jim, I can easily empathize about depression even though Zoloft has worked as a miracle drug (changed my life) for me. Most of us who are particularly very ill have sporadic bouts with depression. What works for you (putting your feet up) is different for others. I take a walk and think about my only child, Theresa Anne, who is the brightest star in my galaxy or any other galaxy for that matter. All in all, ain't life great! Ciao for now, Frank Smith.

Barbara S' June 11 reply to Shirley's June 11, 2000 - Hi Shirley, Your body seems to have to adjust to the differences. I also felt wiped out at first but the body does seem to adjust. I hope this is what will happen for you. Anyway, I wonder how much Coreg affects the vitamins and minerals in our body. In some of us in the web site, it seems to affect sugar number and Coumadin levels. I wish you luck in your adjustment. I wonder if you would benefit from a blood test to check potassium, sugar and other possible things it can affect. Good luck! I really like Coreg now because I eventually got more energy and feel better.

Carl, June 11, 2000 - Hi Jon, I just wanted to thank you for your site. I was told I had CHF in September of 1999. I've learned more on your site than several visits to the doctor have provided. Thanks to you I'm now scheduled to see a CHF doctor this month. I now wear a medic alert bracelet, neither of which my usual (kidney) doctor mentioned. In fact, my usual doctor replied when I asked him about seeing a heart doctor, "You saw one in September when you were diagnosed. If you needed to see one now I would have told you." Thanks again, Carl, age 58, from Oklahoma.

Jon, June 12, 2000 - Hi everyone, Well, some bad news, sort of. My pooter repair by Comp USA PC did not fix my system problems. The tech will be here tomorrrow to wipe out my whole system and start putting in new parts. Unfortunately, he believes the odds are 20 to 1 that I will end up with a clean hard drive, meaning I will have to reinstall and configure everything, and I mean everything. So, do not expect to see any updates, mailings or e-mail replies until Friday or Saturday. I may beat that expectation but I just don't want to worry anyone. :-)
     I was going to launch a new page with a special offer for readers Wednesday. I guess I'll do so now, since the basics are all in place. If you are interested in supplements for your heart and heart failure, go to the MyoVive page. Jon.

Jack's June 12 reply to Kathy's June 11, 2000 - Hi Kathy, No and No. CoQ10 has no effect on levels of either. CoQ10 is a substance that is produced by your body and it does not produce any effects on drugs you are taking. Instead, drugs you take may reduce your body's production of CoQ10, thereby depleting your body of a very necessary substance. Everybody seems to get this backwards because they believe that CoQ10 is a drug. It is not. Jack.

Shirley Valdivia's June 12 reply to Terry T's June 11, 2000 - Hi Terry, I have never taken Coreg but I am taking 25mg atenolol once a day and have been taking it for 1 1/2 years. My son also took atenolol for a peroid of time for high blood pressure, but at a larger dose. If you have any questions that I can help you with, just e-mail me.

Darlene, June 12, 2000 - Hi, I have a question for all CHFers out there. Does anyone else experience a warm sensation going down one's arms to the hand after taking a deep breath? I find this rather odd and wonder what it's all about. Fortunately it's not a bothersome symptom and sometimes goes by unnoticed when I'm distracted but I'm curious as to what it's all about! My meds are Losec, Lorazepam, Lipitor, Novosemide, atenolol, Slow-K, Coumadin, novospiroton (Aldactone) and Captopril.

Tony T, June 12, 2000 - Hi, This is my first post. I have CHF, A-fib, hypertension and asthma. I take:

     I take my blood pressure many times per day. I started this because I was getting very high and widely changing readings at home that differed from the low monthly readings at the doctor's office, and I wanted to find out what was going on. My main goal is to lower my BP as much as I can, to take the load off my weak heart and perhaps slow the deterioration process. I found out that the low readings at the doctor's office were due to my morning visit occuring 2-3 hours after taking Verapamil. Verapamil's lowest BP effect on me is usually about 3 hours after taking it, and then my BP slowly rises until I take the next dose.
     My blood pressure is highest at night, starting around 10:00pm and reaching 175/115 around midnight, with associated and increasing symptoms, such as SOB and palpitations. Because of this, I take my midnight dose of Verapamil 2 hours early at 10:00pm, which reduces the midnight high BP attacks significantly. Since becoming active in the management of my BP with my doctor, I've been able to significantly reduce my average BP reading, dangerous peaks, and associated symptoms.
     My question is, "Does anyone else have lower BP readings earlier in the day, with a tendency to increase throughout the day, then resulting in high BP readings late at night?" Even with the improvement in my BP, I still dread the night because of the increased symptoms and higher BP.

Jack's June 12 reply to Walter K's June 11, 2000 - Yo Walter, Ain't it nice you got to read the garbage? I have the majority of my medical records and it's a wonder we all aren't dead. The records just verify what dangerous idiots these people are. My records say I have "multiple tatoos and piercings." I have one tiny tattoo maybe 1/2 inch by 1/2 inch, and one ear was pierced 15 years ago. The records say I have a history of Cystoid Epilepsy (which does not exist) and I have never had epilepsy. I have many reports of metal fragments in my chest wall and x-rays (yes I have the x-rays, CT-scans, and MRI films) that prove there is no metal. There are reports in my medical record referring to the metal after the x-rays proved there was no metal; And people are worried that the government will get our medical records? Just imagine how bad the government's records are after looking at what happens when a mere handful of Tweedle-dums and Tweedle-dummers have played with them.

Barbara's June 12 reply to Carl's June 11, 2000 - Hi, I would like to know how to find a good CHF doctor. I have a cardiologist but I wonder how good it would be to have an expert in this area of expertise. If anyone on the site could give me suggestions on how to find a doctor who knows more about this disease, please do. I am tired of cardiologists who misdiagnose the condition. I just had a bout of pneumonia and they said I did not have heart failure in the hospital. When I got out and went to an MD for followup, he said I see you had mild CHF. This is an example of mistakes made. It would be nice to talk to someone I trust fully. I always feel I have to look after my back.

Carol W's June 12 reply to Terry T's June 11, 2000 - Hi Terry, I have been on atenolol from the time I was diagnosed. I take 25mg per day now but in the beginning and for more than a year, I took 12.5mg because 25mg could seemingly take all the starch out of me, leaving me a limp dishrag. At the time, no one mentioned Coreg to me. That may be because I am diabetic and have low blood pressure. I know that changing medicines can be scary. I was changed from Vasotec to prinivil just because my HMO no longer wanted to pay for Vasotec. It worked out ok but I was distressed for a month until I was sure that everything was going well. God bless, Carol W.

Taavi K's June 12 reply to Walter K's June 11, 2000 - Hi Walter, I keep a current list of all of my medications in a spreadsheet. This includes dosages, timing notes, and footnotes on allergies. I bring a printout to every appointment and have them put that sheet in my file. I see numerous specialists and this is the only way I've found to keep all in sync on my meds. Taavi.

Frank S' June 12 reply to Walter K's June 11, 2000 - Hi Walter and all, Over the years I have developed a lively case of cynicism, particularly toward most health care professionals. My cynicism dispels such stuff as you are concerned with, especially when I am able to consider that most of the motivation for their behavior is caused by their own self-indulgence. Doctors are the worst. In all fairness however, 99% of the doctors I have met choose to be beleagered by the feds, the AMA, usually the dreaded HMOs and insurance companies, etc. It's amazing to me that most of us never "check out" as a result of their incompetence. Ciao for now, Frank.

Donna's June 12 reply to Barbara's June 11, 2000 - Hi Barbara, Try looking in teaching hospitals for a doctor who specalizes in CHF. They are out there. Where do you live? I have a CHF specialist who's one of the top doctors in IDCM and CHF. She is wonderful. Now I also see a regular cardiologist but my CHF/transplant doctor calls all the shots and changes all my meds. When I was diagnosed, my regular cardiologist saw me first and as soon as I was able, he said to me, "I can treat you for this but there is a doctor in Philly who is a specialist in IDCM and that's who you should be seeing." She was my cardiologist's mentor and I am so thankful I have a regular cardiologist who did not have a big ego as so many do. So they work together to make sure I'm doing alright, which is the way it should be. My regular cardiologist is wonderful and has been so supportive of me. He is even helping me get a support group going and his office is paying for everything and helping me, including giving me their Wellness Center for meetings and paying for PR and bringing in people to speak. What more could I possibly ask for in a doctor? So there are good doctors out there, you just have to be lucky enough to find them. For once in my life I was at least lucky in getting wonderful medical care. Donna.

Frank S' June 12 reply to Tony T's June 12, 2000 - Dear Tony, At the risk of appearing to be presumptuous, Verapamil in my opinion is an outdated and potentially dangerous drug. There is evidence, depending on who you talk to, that verapamil can actually cause CHF symptoms, especially with people who have asthma. It doesn't sound to me like your doctor has much experience with CHF in particular.
     After being operated on in 1990 for a 5-vessel CABG procedure, for some unknown reason my doctor, who was not board certified, prescribed verapamil. Within 6 months, even though I was not aware of it until several years later, the symptoms of CHF started making my life miserable. When I was rushed to the hospital and diagnosed, thay immediately took me off verapamil and put me on Vasotec, an ACE inhibitor. The results were dramatic. Did verapamil cause my CHF? Perhaps you should discuss stopping the verapamil with your doctor, if you have confidence in him. Ciao for now, Frank S.

Tony T's June 12 reply to Jim T's June 11, 2000 - Hi Jim, Regarding depression, I have fought depression most of my life, mostly due to the glandular activity caused by my allergies, in my opinion. Since I started taking a morning dose of 500mg of Vitamin C and about 25mg of B-complex, I completely avoid depression. The B-complex is the one that does the most good for me against depression.

Tony T, June 12, 2000 - Hi Jon, This is a great service. I have searched for CHF and related ailment info throughout the Net. The best source I have found so far is Medscape, where they have many papers on CHF and drug test results but nothing matches this site. I especially enjoy the bios, The Manual and other related material. It will take awhile to go through the tremendous amount of info here.
     Lastly, this site is active! At most other sites you have to wait weeks for a response, if you ever get one. It is sooooo difficult and frustrating when I get increased symptoms and try to figure out what is causing the increased symptoms. Sometimes it takes years to find out what substance or circumstance is causing the increased and dangerous symptoms. Hopefully your web site will unlock some mysteries for me and I appreciate and thank you for your efforts, especially considering you are fighting the same debilitating illness.

Barbara S' June 13 reply to Donna's June 12, 2000 - Hi Donna, I live in Florida near Kennedy Space Center. I have a regular cardiologist but have heard so many talk about a CHF specialist. I really think that it would help to get the right help. I don't know if I am right. I live 3 hours away from Shands' Hopital in Gainesville. It is quite a trip. I would love to use doctors from there. It is one of Florida's teaching hospitals. I used to be in research programs there but I am not used anymore. They tend to switch groups of people around. I think I will probably move nearer to the hospital so I can take advantage of the doctors who specialize in this illness.

Dee L, June 13, 2000 - Hi Jon, What do inverted T-waves indicate on an ECG? Dee.

Walter K's June 13 reply to Taavi K's June 12, 2000 - Hi Taavi et al, The first time I went to the doc whose nurse screwed up my med list, I brought both my meds and a (correct) printed list of all meds and dosages. She took my list but never looked at it, probably figuring what does a senile patient know? She proceeded to make her own list direct from the med bottles. Since I thought she could read, I didn't say anything. She took my blood pressure and I subsequently read in my records that I had been "challenging" toward her? Go figure. With all the other errors in my records, I am wondering who the CHF clinic will believe. Best of luck, Walter.

Tony T's June 13 reply to Frank S' June 12, 2000 - Hi Frank, Yes, you are right. Verapamil in not the drug of choice for CHF and the medical community recommends against the use of it. The question is, "Why am I on it!?" Where do I begin? Hmmm, I don't want to write a book. Well, after several years of bed rest, minimum exercise, many bad days to a few good days, I finally commanded the strength and desire to find out why my bad days were so bad.
     I started taking my own blood pressure. I found out that my worst spells of chest pain, SOB, palpitations, sweating, feeling hot, weakness, etc, came when my blood pressure was soaring. I have a great cardiologist but I realized that he cannot be with me, monitoring me 24 hours per day and that each individual's environment and chemistry is different and complex.
     I started asking for increases in certain meds and monitoring my own blood pressure and the instability of my heart beat. First we increased Accupril from 10mg to 40mg over time, with nothing but increased side effects. Then we increased my Lasix with no result except for much increased side effects. Then we increased my Nitro SR capsules; Nothing. We stayed away from increasing Verapamil because it was not recommended for my condition. Why was I on Verapamil (40mg low dose)? Because the very first time I used it, I felt better. Anyway, I'll hurry up with this before I put you to sleep. <g>
     We tried Coreg but it caused increased wheezing (I have asthma) so I was scared away from continuing tests with this med. Then out of desperation and because of my favorable reaction to Verapamil before, we bumped my Verapamil up from 120mg per day to 200mg per day. I experienced an almost instant improvement in symptoms and BP. Since then, my dose of Verapamil has increased to 320mg per day. I found that even with the increased dosage, my BP was bad at night with associated nasty and frightening symptoms. So I started taking my midnight dose at 10:00pm. Voila! A simple solution. I wondered why it took me so many years to figure that one out!
     To end, Verapamil is very difficult to take. I have to take it away from my other meds and away from certain vitamins and especially a couple of hours away from my Lanoxin dose. I cannot have any dairy products within 2 hours of my Verapamil or I get debilitating heart irregularities. I also have to stay away from certain dyes, especially in clothing. To be truthful, I am not totally sure if Verapamil is responsible for all the heart beat irregularities caused by contact with other meds, vitamins and other substances, but I highly suspect it to be the case. Even with the difficulties I have in taking Verapamil, it is still worth it. We all have to compromise in life. I figure that I have won one of the many battles against this disease and haven't lost the big one yet. Thanks for your response. Take care.

Phyllis A's June 13 reply to Mike L's June 11, 2000 - Hello Jon and All, This is to Mike. I haven't posted lately because I'm doing a bit better and I wrote a book about my bout with breast cancer, which I believe the treatment for it (chemo and radiation) tore down my heart and caused the side effects I now have; which is HCM, congestive heart failure and asthma.
     To answer your question about pacemakers, in the start of the new year I was having a lot of arrhythmias and was very concerned. So was my cardiologist (my old one). He said if I continued to have them after I wore a Holter monitor, I might need a pacemaker but I said I wanted to try medication first. I was put on lopresser and did fine with no pacer. Ask your doc if you can try different meds first. Maybe you will be blessed and not need a pacer. Good luck and God bless.

Joe S' June 13 reply to Frank S' June 12, 2000 - Hi Frank, According to the latest Reader's Digest last month, over 120,000 people die a year due to doctors' mistakes. You should read it. Joe S.

Lynn M's June 13 reply to Tony T's June 12, 2000 - Hi Tony, I want to back up Frank's reply to you. Frank, you weren't at all being presumptuous. Verapamil should be used very cautiously in CHF patients, if at all. I've also read this about other calcium-channel blockers such as diltiazem. Verapamil is a negative inotrope, so it makes the heart contract less strongly, which is a problem in us CHFers, whose hearts already don't beat strongly enough. For more info, go to the Parkinson's List Drug Database at You'll have to scroll way down to the section on contraindications to get to the relevant info. Lynn.

Jon, June 14, 2000, 2000 - Hi everyone, I'll be slow responding to messages for a few days but at least I'm already back online. I did have to fdisk and format my hard drive, and still have an issue for the Comp USA PC tech. We'll see. <g> Jon.

Tony T's June 14 reply to Lynn M's June 13, 2000, 2000 - Hi, I don't think that Frank was presumptuous either. I hope that my responses don't seem ungrateful but I am a little disappointed that there aren't more verapamil users here. Why does Verapamil help my CHF? I think it could be related to what caused my CHF in the first place, which was uncontrolled paroxysmal atrial tachycardia, which I had for years and for which verapamil is currently labeled. Taking verapamil and Lanoxin is an interesting combination. Verapamil restricts calcium, thus relaxing the heart and arteries, and Lanoxin allows more calcium to get to heart muscles, thus helping to make the heart beat more forcefully. I have tried to cut down on my Laxoxin because it really drains me but each time I try, I experience increased irregularities. On the other hand, I once reduced my dose of verapamil from 320mg to 240mg and was very sick with irregularities and chest pains for several days. I won't try that again! Thanks Lynn, for your response.

Bill D's June 14 reply to Barbara S' June 13, 2000 - Hi Barbara, There is a CHF Clinic right in Orlando. It's part of the "Florida Heart Group." A Dr. Milunski runs it. It's near the Florida South Hospital. Their number is (407) 894-4474. Ask to talk to someone in the CHF Clinic. Bill D.

Bill D, June 14, 2000 - Hi all, I had to stop my 50mg of Coreg because my heart was slowing down and stopping for 8-9 seconds. The cardiologist suggested a pacemaker so I could keep taking Coreg. I stopped taking it instead and now my heart only skips a beat once in awhile. However, my BP is getting high, like 200/95! My pulse is 74. The cardiologist keeps talking about a pacemaker. I think I should be taking a lower dose of Coreg rather than the whole 50mg a day; Maybe 25mg or even 12.5mg seems sensible to me. I'd appreciate your opinions. Besides, I have a whole bottle full of 25mg tablets that I can break in half. Bill D.

Phyllis A, June 14, 2000 - Hi, This is about Verapamil. I am presently taking it and it is working great for me. When I was taken off it for awhile, way back when docs were trying to get me on the right meds, I had palpitations and arrhythmia so badly I was rushed to the hospital and eventually put back on Verapamil while in the hospital. I guess it goes back to: good for me, not good for someone else. My heart beats very, very strongly, which causes my symptoms.

Jon's June 14, 2000 - Hi everyone, Verapamil is a lot like vesnarinone, a trial drug I took for quite awhile. There was a small group of CHF patients who got a lot of benefit from it and doctors had high hopes for the drug in CHF treatment. After awhile, it became apparent that even though it helped a few CHFers very much, it was actually hastening the deaths of most CHFers in the trial. The trial was quickly stopped and another one started for only a small, select group of CHFers who stood the greatest chance of benefit. Like Phyllis says, a med may work great for a few people and kill the rest; That's Verapamil and CHF.
     By the way, it turned out when that vesnarinone trial was stopped that I had been on the highest dose of the actual drug all along. Depending on who you ask, it's lucky it didn't kill me. ;-) Jon.

Tom S, June 14, 2000 - Hi, Besides medicine, concert musicians are the only other profession of which its practitioners are expected to perform flawlessly. Given that standard, I wonder how many of us have performed at our given professions flawlessly, day in and day out? The only difference is doctors bury their mistakes, the government goes oops and raises taxes, and the concert musician probably gets fired.

Ann C, June 14, 2000 - Hello group, I was here awhile back. I am now returning and am glad to see that this site is still here. I do not know how long it has been since I have corresponded but my prognosis is not good. I am wondering how everyone is dealing with the depression that one gets from DCM. How to cope? My EF has rapidly dropped and I am now wondering, "What now?" Any thoughts would be greatly appreciated. I have one main question, "How low does one's EF get before considering heart transplant, generally?" Ann C.

Jon's June 14 reply to Ann C's June 14, 2000 - Hi Ann, Have you had a Vo2max test (also called mVo2) recently? My CHF doc is Co-Director of Transplant at my local heart transplant center and he watches that test result more closely than my EF. He says that at 14% Vo2max, we think about a transplant evaluation. Jon.

Franks S' June 15 reply to Bill D's June 14, 2000 - Hi Billdog and all, At the risk of being presumptious again, my impression is that this Coreg stuff is arguably one of the most controversial drugs talked about at Jon's Place. I'm glad I don't have to take it and if I did, I would experiment like crazy just to keep away from it. Since I don't have whatever indications they think one needs to take the stuff, I guess most of us should consider ourselves fortunate and with that, I'll go somewhere and rest for a few minutes. Ciao for now, Frank.

Jon's June 15 reply to Franks S' June 15, 2000 - Hi Frank, Please explain why you consider use of Coreg controversial for treating heart failure. It's a drug and drug class that has been in clinical trials for CHF for over 10 straight years and has tens of thousands of trial patients' results to document its usefulness in CHFers. Like any med, it's not for everyone but please tell us why you are so set against its use in CHFers. I don't understand. Jon.

Ann C's June 15 reply to Jon's June 14, 2000 - Hi Jon, I have not had one in a year, I guess. My EF has gone from last year from 35-40% to 20-25% now. My Vo2max test last year was very low so low I think they said I failed it. I think it was about 11%. Since last year I have lost about 25 pounds, though. I feel better now that the weight is gone. I was overweight then but now I am in my proper range. They want to do another Vo2max but have not told me when. They put me on another drug called Atacand. They want to follow up with another echo in September. Any other thoughts? Thanks, Ann.

Anita C's June 15 reply to Ann C's June 14, 2000 - Hi Ann, I am 54 years old. I suffered with cardiomyopathy and CHF for 9 years, and I functioned pretty well up until a year ago. At that time, my EF fell to 15 and my Vo2max was 11%. I was subsequently referred to a major medical center near where I live for a transplant evaluation. I knew this was coming but I was petrified. I had all the extensive testing and the recommendation was made to me that I go on the waiting list. I questioned, re-questioned, examined, studied, and asked more questions about every aspect of transplant. I cried, screamed, prayed, listened, and finally with the loving support of my family I made the decision to go on the list. I wanted to have a chance to live more than a couple of years and there was no chance of that with my advancing CHF.
     On April 6, I received the call that a donor heart was available for me. That heart now beats inside my chest and I'm doing great so far. It is not easy. I have regular biopsies, blood work and take 40 pills a day but I can breathe (really, really breathe) and it feels so good. I know I have a long road ahead but I feel that what I face now is manageable, while my CHF was unmanageable. I would be happy to correspond with anyone facing the same situation. Anita C.

Phyllis A, June 15, 2000 - Hey Jon, I have a question, "What is considered good EF%?" I know it may be different for different persons but give me some idea; like 50% or under is bad, or 50% and higher is ok. How about if someone has a low EF and someone else has a higher EF but both still have same symptoms? What if one is sicker than the other? Thanks.

Jon's June 15 reply to Phyllis A's June 15, 2000 - Hi Phyllis, Have you read my heart failure FAQ and its EF page? Jon.

Jon's June 15 reply to Dee L's June 13, 2000 - Hi Dee, I don't know. That's more an electrophysiology question and I haven't researched that area much. Have you tried the Links page to find a site that explains it? Jon.

Ginger, June 15, 2000 - Hiya's, My stepdad has been on Verapamil for over a year. He was put on it after a trip to the ER for supraventricular tachycardia. After all the stuff I read about, I wasn't crazy about him being on it. He takes 80mg 3 times a day and was told to make sure he keeps the dosages as close to 8 hour intervals as he could. I have to admit he does well on it and his pulse rate stays down with no more attacks. They won't say when or if he will ever come off of it. He has CHF like the rest of us with an EF of 23. He has remained pretty stable for about the last 2 years and even had a valve replaced last year. He is 74 years old. He has not had a CHF episode since being on Verapamil and he was having them quite often before that. So for some people it works, just not for all.
     Sorry I haven't seen ya's at Chat but I am fighting a super bad cold and have no idea what to take for it. My PCP is out, with all things, heart surgery! The doctor who took over his patiants is my old cardio doc that I fired so I won't call to see what will help this bad cold. I would feel pretty silly calling my cardio doc for a cold. If you all know of any over the counter cold stuff that works, let me know. I tried some and it just makes my heart pound like crazy. Stay well, ya'll. Hugs and prayers, Ginger.

Jon's June 15 reply to Ginger's June 15, 2000 - Hi Ginger, Stay away from anything labeled a decongestant! They speed up your sympathetic nervous system to rid your body of congestion. That is precisely what your CHF meds are designed to slow down! You can trigger heart arrhythmia and can cause serious drug interactions with over the counter decongestants, which almost all cold formulas have in them. Even if you take them with no problems for years, the next dose can still unexpectedly lay you out cold. Jon.

Donna Z's June 15 reply to Bill D's June 14, 2000 - Hi Bill, I had to cut back my Coreg from 50mg to 25mg a day for the same reason. I was only beating 42 beats a minute and was missing beats. My cardiologist cut my dose back and my beats are much better, with only a rare skip. I've also cut out my decaf tea and coffee since caffeine can do all kinds of things to your heart.

Sharon J W's June 15 reply to Bill D's June 14, 2000 - Hi Bill, I know this isn't near you but when we visited Sarasota in March, they announced that the Cleveland Heart Clinic was opening a facility near there. Nice to know it's there if you're in the area.

Debra J, June 15, 2000 - Hi, I think that the underlying cause of your CHF greatly influences whether or not a particular drug works well for you. In the case of Verapamil, the underlying cause of my CHF is HCM. I have tried several different drugs and Verapamil is the only drug I can tolerate, and which helps my condition greatly. Off Verapamil, I have thousands of PVCs daily with runs of NSVT and some fusion beats with my pacer. On it, I have practically none. Verapamil, in my case, is truly a wonder drug.
Jon's note: Different drugs may also be used for right-sided heart failure

Walter K's June 15 reply to Tom S' June 14, 2000 - Hi Tom, I agree, up to a point. However, and I don't know how common this is, my cardiologist (I have been posting complaining about errors in his records) has a printed line across the bottom of his letters and reports to other doctors and in his records for himself, which reads, "Dictated but not read in order to expedite correspondence." Translation: "There may be typos, we may have numbers transposed so that an EF of 16 is reported as 61 but at least we will get that to you in a hurry." There is no excuse for allowing that type of potential error simply to avoid proofreading. I don't know if his data has been messed up because of this but in one record, another doctor's name is badly misspelled and I know my doc knows the correct spelling. That is not medically significant but it makes me wonder about the rest of the stuff. Does anyone know if this lack of proofreading is common?

Jon's June 15 reply to Walter K's June 15, 2000 - Hi Walter, My CHF doc uses Medicalogic office software, with a desktop in every patient exam room. The doc and his nurses - every nurse who takes info from you - has to enter it into the record in front of you at the time and you can review it for accuracy. This is precisely what goes into your medical record. It's an expensive system but is slowly gaining acceptance. Jon.

Tony T's June 15 reply to Phyllis A's June 14, 2000 - Hi Phyllis, Thanks for the response about Verapamil. I hope you are doing fine today. You made a remark about your heart beating strongly. I relate that to one of my biggest problems. My heart will go into a "thumping" fit. The stronger the thumping, the worse I get and the longer it lasts. Once it starts it seems to go on forever!
     A couple of months ago, I wore a holter ECG machine for 24 hours. The beginning of my "thumping" session was the same time that the holter recorded my longest V-tach event. There were also numerous ventricular ectopic events and tons of supra-ventricular ectopic events. These ectopic events are where the heart is not being activated in the right place or at the right timing. So my guess is that when my heart is thumping or pounding too hard and making me weak, tight chested and causing additional chest pains, is when these ectopic events are happening.
     Has your doctor discussed these strong beats with you? When your heart goes into a strong beat session, does this increase your symptoms and discomfort level, as it does me? Are you really on 360mg of verapamil twice a day? That's twice the maximum level of the med, right? Also, on the verapamil, about 30 to 90 minutes after I take a dose of verapamil, my heart gets more erratic and "thumpy,", then goes back to normal (or unnormal, depending upon how you look at it). Do you experience the same? Thanks again Phyllis, for your response. I hope today is a good day, Tony.
Jon's note: at least 480mg Verapamil a day is a normal dose for some indications

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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