The paperwork never ends The Archives
February 1-15, 2002 Archive Index CHFpatients.com

Jon 2-1     just got power back
 
Tom S' 2-1 reply to Henry's 1-30     VA information
 
Scott Brown's 2-1 reply to Nikos K's 1-28     Coreg & fatigue
 
Scott Brown's 2-1 reply to Ralph's 1-28     stress and CHF, & more
 
Donna H's 2-1 reply to Henry's 1-30     VA information
 
Ashley 2-1     questions before taking Coreg
 
Andrea's 2-1 reply to Ralph's 1-30     letting go of those doctor mistakes
 
Sharon 2-1     seek information on Aldactone
 
Amelia's 2-1 reply to Jon's 1-30     staying on meds & letting anger go
 
Barb 2-1     questions & seek Charlotte, NC CHF doc
 
Christina 2-1     seek peripartum cardiomyopathy patients
 
Marie 2-1     emotional & stress questions
 
Herbert L's 2-1 reply to Jon's 1-30     stress and CHF
 
Brian's 2-1 reply to Joe S' 1-29     artificial heart valve experience
 
John G's 2-1 reply to Joe S' 1-29     artificial heart valve experience
 
Elaine F's 2-2 reply to Shirley's 1-26     pacer info & experience
 
Tony's 2-4 reply to Mary's 1-28     allergies may be a possibility
 
Joseph P's 2-4 reply to Barb's 2-1     self medicating
 
Katherine H 2-4     has this happened to anyone else?
 
Bill D's 2-4 reply to Marie's 2-1     about the way he feels
 
Tracey C 2-4     seek tips for traveling, eating out
 
Bob 2-4     seek advice on stopping meds, chest pain, & more
 
Jon's 2-4 reply to Bob's 2-4     some advice
 
Rob C's 2-5 reply to Ashley's 2-1     good Coreg experience
 
Barb M's 2-5 reply to Ralph's 2-1     bad diagnoses, coping, & more
 
Michael S 2-5     stopping or adjusting meds
 
Joe S' 2-5 reply to Tony's 2-4     allergies, food
 
Sharon's 2-5 reply to Norma's 1-29     herbs, garlic ARBs, yoga & more
 
Jon 2-5     page updates
 
Diane's 2-5 reply to Bob's 2-4     please get a second experience
 
Jeanette W's 2-5 reply to Tracey C's 2-4     herbs experience
 
Jeanette W 2-5     prayer request
 
Joan 2-5     seek advice - high BP with slow pulse
 
Mary Lou 2-5     post correction, neurontin experience
 
Pat M's 2-6 reply to Barb M's 2-5     back ache question
 
Julie G's 2-6 reply to Ashley's 2-1     Coreg experience
 
Norma's 2-6 reply to Sharon's 2-5     thanks, seek eating out advice, & more
 
Bill C 2-6     update on Rachel
 
Scott Brown's 2-6 reply to Ashley's 2-1     Coreg experience
 
Scott Brown 2-6     diuretic no longer works well - any advice?
 
Jack D's 2-6 reply to Norma's 2-5     eating while traveling
 
Sherrell G 2-6     prayer requests - CHF getting worse
 
Gino's 2-6 reply to Joan's 2-5     treatment possibilities
 
Amelia's 2-6 reply to Jeanette W's 2-5     lump in breast experience
 
Jon 2-6     added another low sodium recipe
 
Jon 2-7     added a low sodium recipe
 
Tom S' 2-7 reply to Scott Brown's 2-6     diuretic effectiveness experience
 
Nancy S 2-7     to Sherrell G and Jeanette W
 
Krista L's 2-7 reply to Scott Brown's 2-6     diuretic effectiveness experience
 
Janet 2-8     just diagnosed and very frightened
 
Joan's 2-8 reply to Gino's 2-6     thanks for advice & more
 
John Rice 2-8     just checking in, an update
 
Jeanette W's 2-8 reply to Janet's 2-8     we're here to help
 
Kathleen's 2-8 reply to Ashley's 2-1     Coreg experience
 
Karen F's 2-8 reply to Janet's 2-8     we're here to help
 
Karen K's 2-8 reply to Janet's 2-8     we're here to help
 
Gino's 2-8 reply to Joan's 2-8     some more info that may help
 
Autumn's 2-9 reply to Jeanette W's 2-5     similar experience
 
Joe S' 2-9 reply to Janet's 2-8     don't give up hope
 
Joseph P's 2-9 reply to John Rice's 2-8     ICD life time
 
Samir 2-9     statistics, being cured of DCM
 
Dorothy Powell 2-11     my doctors' views on CHF meds
 
Gino's 2-11 reply to Janet's 2-8     things to remember & consider
 
Ralph W's 2-11 reply to Sharon W's 2-5     meds & side effects, docs, questions
 
Kristina Jones 2-11     back after long absence
 
Samir's 2-11 reply to Jon's 2-9     that was a 90% survival rate
 
John R V 2-11     seek northern California CHF doc
 
Joe S 2-11     drug reaction - any ideas?
 
Joan's 2-11 reply to Gino's 2-8     some questions
 
Jacky 2-11     ejection fraction questions
 
Janet T B 2-11     thanks & more
 
Davida S' 2-12 reply to Jacky's 2-11     improving ejection fraction
 
Ruthie 2-12     seek those with type 2 diabetes and CHF
 
Vee's 2-12 reply to Joan's 2-11     high blood pressure, meds experience, possibility
 
Sharon's 2-12 reply to Janet's 2-8     we do understand
 
Helen Otis 2-12     update, not good news
 
Ingrid 2-12     why don't we use the chat room?
 
Sharon's 2-12 reply to Ralph's 2-11     post and peri-partum cardiomyopathy
 
Cathleen 2-12     seek pravachol experiences
 
Herbert L's 23-12 reply to Ruthie A's 2-12     my diabetes drug experience
 
Herbert L's 23-12 reply to Sharon's 2-12     thank you
 
Donna 2-12     update and some questions
 
Gino's 23-12 reply to Ruthie A's 2-12     diabetes & CHF control
 
Davida S 2-12     arrhythmia questions
 
Jon's 2-12 reply to Davida S' 2-12     arrhythmia info
 
Jon 2-13     injectable Lasix shortage
 
Jon 2-13     making new site - seek suggestions
 
Helen Otis 2-13     update
 
Cindy 2-13     echo report questions
 
Ruthie A's 2-13 reply to Gino's 2-12     exercise, meds, & more
 
Katherine H's 2-13 reply to Donna's 2-12     seek amiodarone experiences
 
Bob 2-13     biting tongue at night - anyone else?
 
Jacky's 2-14 reply to Katherine H's 2-13     amiodarone experience
 
Davida S 2-14     has anyone else had an episode like this?
 
Jon 2-14     to Donna from Florida
 
Rick M's 2-14 reply to Bob's 2-13     sleep apnea, pacemakers & more
 
Michael's 2-14 reply to Katherine H's 2-13     amiodarone experience
 
Ruthie A's 2-14 reply to Bob's 2-13     tongue biting while asleep
 
Jack D's 2-14 reply to Bob's 2-13     problems of the tongue
 
Jill M 2-14     never surrender hope for improvement
 
Cheri S 2-14     finding a new doctor
 
Jon's 2-14 reply to Cheri S' 2-14     finding a new doctor
 
Katherine H's 2-14 reply to Ruthie A's 2-14     tongue biting while asleep
 
Cindy 2-14     right-sided heart failure question
 
Claudia S 2-15     low oxygen level while sleeping & more
 
Robin Lynn 2-15     sarcoidosis, ACE blood levels questions & more
 
Henry 2-15     seek pacemaker experiences
 
Tracey C 2-15     interviewing for jobs with CHF
 
Ralph's 2-15 reply to Cindy's 2-14     get your medical records & more
 
Cat's 2-15 reply to Bob's 2-13     fainting, seizures, and tongue biting
 
Jon's 2-15 reply to Cindy's 2-14     echos, valves, right-sided heart failure
 
Davida S' 2-15 reply to Tracey C's 2-15     job interviews and your CHF
 
Noreen 2-15     seek TEE experiences, pregnancy question
 
Karen F's 2-15 reply to Cindy's 2-14     diastolic heart failure, Toprol-XL
 
Maria 2-15     seek pregnancy with CHF experiences


Jon, February 1, 2002 - Hi everyone, Well, the Midwest USA's ice storm took us out pretty good and I just got power (and heat) back today. It may be tomorrow before I get posts going. I have 13 trees down in my yard, amonst other good stuff. Hey, it could be worse - there's nothing like a pair of adult Rottweilers to keep you warm on a really cold night. <g> Jon.


Tom S' February 1 reply to Henry's January 30, 2002 - Hi, If you were a veteran of any service, particularly during the Viet Nam era or Gulf War, you are eligibile for VA medical benefits, which includes quite a shopping list of things, not the least of which is very low cost medicine. It takes about 6 months to a year to get your application processed by the VA so time is always of the essence. You will need a copy of your discharge papers, which is form DD214. That is available from the St. Louis center and you can find applications and information on that online on the Internet.
     There are about 8 categories for veterans, the highest being a one which is reserved for Medal of Honor winners; disabled Veterans are next and Purple Heart recipients are a 3, while the rest of us who served but did not have a service-related injury or disability fall in the 4, 5, 6 and 7 categories. If you are very low income you can receive all your current prescription medicines for free, however most veterans have to pay a copay which just jumped up from $2 to $7 for a 30 day supply of pills, and to $21 for a 3-month supply.
     The VA provides glucometers and all your diabetic supplies for free, and an eye exam and one pair of glasses a year. I also understand they supply orthopedic shoes and in some cases hearing aids, again free. If you are in a group 6 or higher the copay on the medications is capped at $840 a year unless you can prove indigency. I get all my meds there, which includes Coreg, furosemide, potassium chloride (generic K-dur), Glipizide (generic Glucatrol), irbesartan (generic Lotensin), Methocarbamol for aches and pains, enteric aspirin, and spironolactone.
     I don't know what VA facilities are available in your area but I have to travel 60 miles to get to a full blown VA hospital. There is a VA clinic about 25 miles closer but it is only a clinic and from what I understand I would still have to visit the hospital from time to time. By the way, the VA loves bodily fluids and thus far have collected many vials of blood from me, just about every time I go, and about a gallon of urine from a 24 hour sampling for which I was given a large orange jug I had to keep in our refrigerator, and then chill for transport to the VA lab. My wife was thrilled about that one.
     They have already booked me for a colonoscopy set for September 13, 2002 and I haven't even checked the calendar to see if it is a Friday. Not thrilled about that either. The only drawback I see is the requirement to see a VA doctor, which costs $51 and drives the bill up fairly fast, and seems fairly frequent. The application process is reasonably straightforward but it does take time. My application took almost 6 months to the day to be approved. I was only sorry I didn't do it 3 years earlier.
     From your question, I believe you are under the impression that the VA pays monetary disability stipends, which they do, however the income threshold is very low and the stipend is commensurately low. When I checked into it about 3 years ago it was around $125 and I have a 7-member household. You can check through your local Veteran's office for the applications. In my city (population 60,000) there was a Veteran's representative within a block of my house and we went through the application process but I was turned down because the combined income of my wife and my SSD (Social Security Disability) was too high. I hope that answered a few questions for you and good luck, but above all get started on that application right away, don't delay. bhigheart@hotmail.com


Scott Brown's February 1 reply to Nikos K's January 28, 2002 - Hi Nikos, With regard to Coreg and fatigue, this is a normal reaction. I believe there are enough studies to show that Coreg is beneficial for keeping us CHFers alive longer. It is worthwhile to tolerate Coreg at as high a dose as possible. If you get to the point where you can no longer tolerate the fatigue, your cardiologist might suggest halving your current dose to see how you feel.
     Some people do not report fatigue while taking Coreg. My EF is under 25 and I constantly struggle for ambition to do anything - like getting up for work. A few times I have taken my Coreg dose late and these are the only times I do not feel fatigued (until after I the take the dose). I have not heard of Coreg and extra saliva. Scott from Canada. kitchenerguy@hotmail.com


Scott Brown's February 1 reply to Ralph's January 28, 2002 - Hi Ralph, It seems that Paxil is the anti-depressant of choice these days. It was perscribed to my dad who has CHF. It appears to be routine to use Paxil with CHFers. It's terrific that you are feeling much better. I hope I show signs of improvement at my next cardiologist appointment. Doctors have to be careful not to jump to conclusions based on observations from one patient. Your view may be totally valid - I know that I had very little stress in my life before I was diagnosed. Take care, Scott B. kitchenerguy@hotmail.com


Donna H's February 1 reply to Henry's January 30, 2002 - Hi, In the VA hospital that my husband goes to, there is a Disabled Veteran's Office. The person there can help you with paperwork for any additional pension. Donna. herdrich@grm.net


Ashley, February 1, 2002 - Hi, I am 27 years old and seeing a doc again for my heart conditions that I have been neglecting the last couple of years. I have cardiomyopathy, enlarged left ventricle, and an EF of 35%. The doc says I defy everything he knows about a patient with an EF of 35% as far as function goes. I am thankful for that but I have concerns. He wants to put me on Coreg and digoxin (Lanoxin). The dig I have been on before so I don't see a problem there but the Coreg makes me apprehensive. I have low blood pressure so that is a concern and I also have a job that requires a lot of mental sharpness and I don't want that compromised. I also don't want to be lightheaded all day. I am a single mother so not working is not a possibility. I have chest pains on a weekly basis so he is working to deal with that before I definitely do the meds but I am worried about the side effects of Coreg. Any comments? charis1111@aol.com


Andrea's February 1 reply to Ralph's January 1, 2002 - Hi Ralph, Jon is absolutely right. I was also misdiagnosed and treated for things I didn't have for almost 3 years. Once I finally let go of my anger and bitterness, I was able to more fully participate in my life and in managing my CHF. There isn't much recourse for a patient unless they die and the family sues anyway. I agree that patients need to always read and understand what HMOs or other coverage providers say in manuals and handbooks. It can save one a lot of grief to know what is going on, but you must let go of anger. It isn't helping you at all. In fact, it is likely harming your heart.
     I have put the energy I used in staying angry to better use by trying to educate people about heart health. I also have spoken at a local medical residency program to help educate young doctors about the different ways that patients can present with cardiac problems. The doctor who first misdiagnosed me did make a public apology and has since treated a close friend of mine for peripartum cardiomyopathy, and she has recovered - her EF up to 54% from 28% in a year. She is maintained on an ACE inhibitor as well. If this doctor had treated me as quickly as he did my friend, I might not be a sick as I am now, but hindsight is 20/20. I'm glad this doc did listen, even if too late for me. azure_skye@msn.com


Sharon, February 1, 2002 - Hi All, My question concerns Aldactone (spironolactone). I am having trouble accessing the original article decribing the "scrubbing" effect of the drug upon heart scarring. I want to find out how long it took for this action to be notable. Also, is there scarring in all cardiomyopathy/CHF cases or does it perhaps depend on the cause? Thank you. sharewilson@yahoo.com


Amelia's February 1 reply to Jon's January 30, 2002 - Hi Jon, You are so right about going off meds then having heart failure big time. Also, about letting go of your anger and bitterness when a doctor says you are fine and takes you off your meds. This happened to me and yes I take some responsibility for not seeking another doctor but with all the tests he took I felt like it was all in my head. Last April I was so bad I went to another doc, a CHF specialist, who was highly recommended. I ended up in the hospital with a-fib. This doctor was shocked that another doc took me off meds. Lots of tests were done that no other doc did: a TEE as well as an angiogram, and all the other routine stress tests, etc,... Having a septal aneurysm, a-fib, TIA and left ventricular dysfunction, I don't believe can be labeled as a "healthy heart." My doctor told me the ACE inhibitor was the most important med so I plan to stay on it and hopefully will keep be going for a long time. Best to all. amelias@erols.com


Barb, February 1, 2002 - Hi, After 3 months of confusion, denial, and way too much Coreg, I've just found your site. Hallelujah! Now I can start to believe that I may actually be able to live with this condition and at age 47 with an 8 year old child, I'd like to believe I can.
     For starters, I'm wondering if anyone is taking treatment in the general Charlotte, North Carolina area. I live an hour north of there and while I'd already suspected I should be doc-shopping (ah, but the nurses are peaches!). Jon's site has convinced me that I'd better get on it. I'm doing better monitoring myself and adjusting my own meds. Neck veins, what's up with that? Any help you all can give will be so very appreciated. Barb. themakpak@gmx.net


Christina, February 1, 2002 - Hi, My name is Christina and I was diagnosed with idiopathic cardiomyopathy or possibly peripartum cardiomyopathy. I was 8 1/2 months pregnant at the time. Our son is very healthy right now, thank God. My ejection fraction now is 33%. It was 5% or 10% when I was finally diagnosed. I am looking for any information and certainly want to hear about what others have gone through. I know if it is anything like us, there is a lot to talk about. My family is very grateful to our team of doctors and nurses, we have had the best. My outlook on life is wonderful considering, but the way I see it is if I have to go sometime I want to make the best impression on my son and life and have fun while I'm here. Thanks, Christy. If anyone wants to chat, my e-mail is nineballtko@yahoo.com


Marie, February 1, 2002 - Hi everyone, I am new at this so I hope that you will bear with me. I was diagnosed with CHF in October of last year. I also have severe arthritis that prevents me from walking. I have had a care provider who also is my ex-husband, that we have remained friends for 25 years. Well, before I developed CHF we were talking about getting remarried, but then he got scared and went to another woman because he thinks that I am going to die at any time and he is afraid of being alone after I am gone. My question is, is it normal for him to feel that way and also doesn't stress play a big part with people that have CHF? He doesn't seem to think so. Thank you. marie_maly@hotmail.com


Herbert's February 1 reply to Jon's January 30, 2002 - Hi, You've really got it right to Ralph. Stress I believe is our worst CHF enemy. Unless he can control it, and so far it does not seem so from what I have been reading, he will do more damage to himself than he thinks that doctor ever did. the-honey-do@charter.net


Brian's February 1 reply to Joe S' January 29, 2002 - Hi, About 25 years ago I got a pig valve and it lasted 6 years. After that I got a metal valve, and it just started leaking this past year. That's just my experience. They tell me the risks with open heart surgery are geometric and they don't do more than 3, and often you don't come out as well after the third time - something to avoid if you can. I wish I would have started with the metal valve, but perhaps the others are better now. I wouldn't take the chance. bpgruber@yahoo.com


John G's February 1 reply to Joe S' January 29, 2002 - Hi Joe, About 3 years ago one of my brother in laws had a heart valve replaced. He left it up to the doctor and his choice was the pig valve. The decision was based in part on Jim's age as it was noted, that he would probably outlive the valve. At any rate he got the pig valve and the only side effects he has had with it is that he has a tendency to oink and wants to go out in the garden and root up plants. ;-) a_lenny6@hotmail.com


Elaine F's February 2 reply to Shirley's January 26, 2002 - Hi Shirley, My name is Elaine and I've been coming to Jon's site for about 3 years now. There is nowhere else anywhere that has the info this site does. Coincidentally, on January 10th I had a biventricular pacer implanted. I think it's still a bit soon to be able to tell just what kind of a difference it will make. I have a left bundle branch block and that is one of the problems the biventricular pacer should help alleviate.
     Go to Jon's pacemaker page and it explains it very well. I have been ahead of my CHF specialist on this subject, in that when he brought up the possibility of my being in some of the trials in late 1999, I already knew what he was talking about. However, because of a detour for a diagnosis of breast cancer, I only now got around to getting the pacer. I'm hoping to develop a case of energy now! Medtronic has a web site at www.medtronic.com. Possibly you can find the info you're looking for there, Elaine F. heartfelt16e@aol.com


Tony's February 4 reply to Mary's January 28, 2002 - Hi Mary, You mentioned that you get extremely weak when you sit down too long. Does it happen all the time? My heart will misfire if I come into contact with certain dyes or dust or other allergens. Common side effects, for me, include sweating, high blood pressure, heart beat irregularities, and feeling lousy. The longer that I am exposed, the weaker I get, and the longer it takes me to get over the experience. So, I avoid sitting on certain sofas and recliners that trigger a bad reaction. t0nyt@yahoo.com


Joseph P's February 4 reply to Barb's February 1, 2002 - Hi Barb, The worst thing you can do is self medicate. You're are messing with your quality of life. Please get some professional help with changing meds if possible, Joseph P. joeandol@yahoo.com


Katherine H, February 4, 2002 - Hi, Can anyone tell me why my blood pressure would suddenly go down to 90/60? It was in the 130s/high 70s. My pulse went up from the 70s to 120s for an entire weekend! It seems very strange to me and there was no obvious changes in my life style or diet. I just felt extremely dizzy and weak. Katherine. holian@metropo.mccneb.edu
 
Jon's note: This happened to me once. It turned out I forgot to take my Coreg that day


Bill D's February 4 reply to Marie's February 1, 2002 - Hi Marie, You asked if it was normal for him to feel that way. Isn't that why you divorced him in the first place? <g> Bill D. billdog11@earthlink.net


Tracey C, February 4, 2002 - Hi, I was wondering if anyone takes echinacia. I used to take it pre-CHF, but hadn't taken it at all until this weekend. My pulse was high all weekend and my palpitations came more frequently. I probably should have asked my doctor prior to taking it, but now that I have, does anyone else take it? Also, I had felt great for weeks and lifted some groceries last week that were apparently too heavy. I get an almost instant feeling of being "unwell" with an urge to cry. Not anything obvious as far as the heart, just the feeling and the need to cry. Maybe my body needs to rid itself of some chemical. Who knows.
     Finally, I am taking my first real vacation this weekend to Vegas. Does anyone have any suggestions on dealing with the buffet? One night we're going to a steakhouse so I should be okay there once I give the poor waiter my do's and dont's. Take care, Tracey. 2tcollins@home.com


Bob, February 4, 2002 - Hi, In March of 2001 I suffered a stroke and mild heart attack. I was diagnosed with idiopathic dilated cardiomypathy, probably caused by a virus, with an EF of 15%. Since that time my EF has risen to approximately 45%. I am seeing a cardiologist that says because my EF is higher that I must be almost totally recovered.
     My basic question is this: Is this something I should take up with a CHF specialist or is a cardiologist all right? When I was hospitalized, I was told to take seriously any signs of shortness of breath, weight gain, and chest pains. I have gained aproximately 20 lbs in the last 4 months. I am now 5'11" and 190 lbs. I do not have swollen ankles, and never had swollen ankles when I was admitted to the hospital. I often have shortness of breath even while sitting and I have chest pains from time to time, especially when tired or stressed.
     My cardiologist is close to taking me off all medication and having me take one aspirin a day. His opinion is that I am almost 100% again. The only tests taken in the last 9 months are an echocardiogram once every 3 months. As of now it has been 4 months since my last echo. I am scheduled for one more in April.
     I am taking Coumadin alternating 4mg and 5mg daily, 5 mg prinivil, 50mg lopressor, 40mg lipitor and flovent. I have been told by others in my situation that I need to see a CHF specialist and I would like a second opinion. The pains that I have now are the same ones that I was told to take very seriously at the onset of my problems but now I am told that they mean nothing. If so, then should I just ignore them and assume that the weight gain is just normal and start dieting and exercising more? I am a little concerned and confused. Do you believe I should make an appointment to see a CHF specialist? bobacp@tri-lakes.net.


Jon's February 4 reply to Bob's February 4, 2002 - Hi Bob, I'm not a doctor but here are my suggestions: See a CHF specialist. Don't let this doctor take you off all your heart meds! See these posts for examples: Susan B's 1-16 reply to Karen S' 1-15 and Dr. Marc Silver's reply about not stopping all CHF meds to Robin L, question number 16. Also take your chest pain seriously. Please get a second opinion, preferably from a CHF specialist, as soon as possible. Jon.


Rob C's February 5 reply to Ashley's February 1, 2002 - Hey Ashley, I was diagnosed last year at age 36 with CHF. I take 6.25 mg Coreg BID (and soon to be increased by docs) along with digoxin and a couple of other standard CHF meds. I have seen no decrease in my ability to focus on detailed work and the benefits have been good to date. I started at only 3.25mg BID and have been at 6.25mg BID for a few months, so I cannot say if higher dosages or whether you may experience different effects. Perhaps if it's decided the meds are a good idea, they will gradually build the dosage if the doc feels it appropriate. Good luck, Rob. robert40@home.com


Barb M's February 5 reply to Ralph's February 1, 2002 - Hi, I've had CHF for 5 years. I was diagnosed at age 47. My ejection fraction is currently 20%. Bitterness and resentment only hurts you and your heart, figuratively and literally. Let it go and move on.
     CHF isn't always the easiest to diagnose. I had no personal or family history of heart problems. Back pain can be muscle ache. Shortness of breath can be a cold or pneumonia. Tiredness can be due to having 4 children and raising them alone. Heart failure is not a simple assumption doctors tend toward. In short, it happens. One good outcome in my case was when my new general practitioner told me that my case had opened his eyes regarding another of his patients. She had presented with similar symptoms: no heart history, an otherwise healthy, relatively young woman with backache, tiredness and nocturnal shortness of breath. He thought of me and sent her for an echo and diagnosed her much quicker than he would have otherwise. She is back to work with a 50% EF.
     Finally, count your blessings. God has given me a wonderful, supportive family who brought me through this. An old Irish saying is, "The Lord fits the back for the burden." Hang in there. Life can be very, very good. BSM385@aol.com


Joseph P's February 5 reply to Tracey C's February 4, 2002 - Hi Tracy, Try The Orleans for the Prime Rib. It is one of the best in town, I think. Good luck and God bless, Joseph P. joeandol@yahoo.com


Michael S, February, 2002 - Hi, I received a handout from when I had my eyes checked 2 weeks ago and it says not to take echinacea if you are on corticosteroids or azothioprine. It also has info about St. John's Wort, Ginko, garlic supplements, or excessive amounts of real garlic. I eat a lot of garlic but don't take Coumadin any longer. What's excessive? I don't know. They also listed Ginsing, Kava Kava,and grapefruit juice as having potential interactions. I hope this helps.
     For those of you out there who are self-medicating or quitting a med, I almost died until I got my meds. I have my good days and bad ones, and until my quality of life gets really bad, I am staying on mine. Dizziness, insomnia, and running out of breath while climbing at this stage seems to be my worst symptoms now. The Coreg bothered me for 3 months or so with stomach pains and nausea but now that has gone away. Prayers for all, Michael S. mikes@cpros.com


Joe S' February 5 reply to Tony's February 4, 2002 - Hi Tony, I think you hit it on the head with allergens but it isn't just what we breathe, but what we eat. Restaurants are adding more and more seasonings to everything including potatoes and meats. It used to be that when you ordered something, that is what you got but no more. McDonald's, which used to be the healthiest, is now the worst because as their ad says "We've found out how to make it taste good from the inside." In other words they are injecting everything with chemicals. I went out New Year's Eve and ordered Lobster Thermador and almost died. I've pretty much given up on eating out, Joe S. jes@gbis.com


Sharon's February 5 reply to Norma's January 29, 2002 - Hi Norma, I also was on hawthorne for a while. I did not have health insurance for awhile and had no access to free care. I took garlic and hawthorne but saw absolutely no help from the hawthorne. It could be that it helped but not in a way that was obvious. Garlic has been recommended to me by one heart doctor, a cardiologist, highly respected here, from the Heart Group in Oklahoma City. However, I saw no improvements on it and I think was going down until I started Cozaar (an ARB). It does not have the annoying cough and far fewer side effects. I am telling you that this, with the CoQ10, may really help you. I had been an herbalist for years, even went through Botany at OU studying secondary plant compounds to understand herbalism better. If your doctor agrees, try the Cozaar. The first few weeks are rough but then the feelings will level off. In a few months you may really notice a difference.
     Norma, stay away from any preparations with Licorice root. It can trigger arrhythmias. That's a problem with CHFers and CMPers. If you do herbs, have you tried a gentle yoga too? I have friends who swear by it. Stay positive and well! sharewilson@yahoo.com
 
Jon's note: If you try yoga, please be wary of standing poses and more than bare basic breathing techniques. Keep it gentle, like Sharon says.


Sharon, February 5, 2002 - Hi, I saw something on Ralph's response to my question, and Jon responded to Ralph's reply. My question is, does Coreg cause problems in dealing with stressful situations? I was robbed at gunpoint a few days before Christmas, and I was hysterical for hours. I live in Oklahoma City, Oklahoma, USA, , and we had the most awful tornado-y storms, even 10 tornados in a storm system in one night. That's just one storm. I usually am pretty useless then. Should I expect worse now that I am on Coreg? Thanks all! sharewilson@yahoo.com
 
Jon's note: Yes, and yes. Sorry,


Jon, February 5, 2002 - Hi, I added two new recipes to the end of the Main Dish list at Let's Cook. Jon.


Diane's February 5 reply to Bob's February 4, 2002 - Hi, Take the shortness of breath seriously! The only symptom I ever had was shortness of breath. I never had any swelling, no fluid in the lungs, and no chest pains. I was up walking up and down 3 flights of steps at least twice a day, driving myself, caring for my kid, etc,..., but often so short of breath I had to rest a couple of times every block. Finally, after a year of inhalers my doc ordered a chest x-ray to look at my lungs and found my lungs in fine shape but my heart enlarged. An echo, then a cath later that day, showed an EF of 12%. I've been on meds now for about 60 days and feel great but my CHF docs are saying the goal is to rest my heart at target doses of meds for at least 6 months. Then maybe taper back some of the meds. They've said no CHFer is ever med free. Please get a second medical opinion. diane_wells21@hotmail.com


Jeanette W's February 5 reply to Tracey C's February 4, 2002 - Hi Tracey, I take echinacea every day. It helps with my immune system. Because I have DCM and am on a lot of medication I am very susceptable to colds and flu. I take echinacea with 1000mg vitamin C a day: the pure vitamin C, not one with additives. I also take ginger, cranberry and valerian root. I also drink Pao d'arco tea when I am not feeling well. They make a great bit of difference in the way I feel. Check with your doc before trying any herbs but you should be okay with echinacea. Just make sure before you do. I am a great believer in herbs and have been taking them for over 10 years. Good luck and take care, Jeanette. jeanette841@yahoo.com


Jeanette W, February 5, 2002 - Hi all, I hope everyone is doing well. I am need of some prayers. I have been battling with a lump in my right breast and had an ultrasound done. They say now I have to go through a needle biopsy. It is not until next Friday, 10 days from now. It is most likely cancer. It is hard enough to think you might have cancer but to have to wait so long to find out is another torment. Please keep me in your prayers as I try to make it through this rough time. I love you all, take care, Jeanette. jeanette841@yahoo.com


Joan, February 5, 2002 - Hi all, I've read all the posts but still have not seen anyone with my problem. My blood pressure is too high but my pulse rate is too slow. I had a bypass 2 years ago and have cardiomyopathy, had an arrhythmia (now under control), am on a calcium channel blocker at 300 mg, 0.25mg digoxin, 50mg captopril, 40mg Lasix, 25mg atenolol, and I am diabetic on insulin for 40 years. Does anyone have any suggestions on how I can lower my blood pressure without slowing my pulse rate further? It gets down to 45 beats per minute sometimes. MMeeks5821@aol.com


Mary Lou, February 5, 2002 - Hi Frank, Walter, and Ruthie, I made a mistake in my post of January 29. I take 1800mg Neurontin BID (three 600mg tabs BID).
     Frank, in my case Neurontin, Pamelor, and B-12 have been a life saver. I really can't imagine life without them and the relief they afford; at least not a comfortable one. Like you Ruthie, I have had a good experience with Neurontin. Unlike Jon, I had the symptoms he experienced when he took Neurontin before I took the drug. I had to sleep with my feet outside the covers because the sheet made me feel as though my feet were on fire even more than they did ordinarily and a breeze felt like the fires of Hades were blowing across my feet.
     After the initial testing period trying different drugs in varying strengths, the present is the one most effective in my case. My neurologist started with the lowest dose of each drug, then increased the dose until a satisfactory degree of relief was accomplished. At times the peripheral neuropathy does act up and I am reminded of the "old days" when pain was my companion 24/7. Now however, it is transient and I can deal with it. I tend to take the fewest drugs possible and the lowest doses of those I do take to reach maximum benefit. Even with that as my credo, my drug regimen consists of 19 prescription drugs, 2 inhalers, one injectable, B-12, CoQ10, a multivitamin and TUMS. That's too many, but each is necessary. All of my physicians (CHF, rheumatologist and pulmonologist) have tried to shorten this list but it isn't do-able. My neuroologist has said that any time I feel that I need of an increase in the Neurontin, just ask and he'll write the script. I have not asked for this.
     So you see Walter, I can understand your position on not wanting to increase the medications you already take. Who knows, I might have no breakthroughs at all if I did increase Neurontin. I can't say what the ultimate outcome would be but I'm satisfied as long as that old monster pain stays in its cage. Sometimes however, an increase in meds does become necessary for optimal control of a condition or the pain it generates. This is just my opinion. Good luck to you all. Be well, Mary Lou. MLBinksS@aol.com


Pat M's February 6 reply to Barb M's February 5, 2002 - Hi Barb, I really enjoy your positive outlook. When you had your backache, what part of your back was it and was it steady or a certain time of day? I am curious. Thank you, Pat M. pmarble@tellico.net


Julie G's February 6 reply to Ashley's February 1, 2002 - Hi Ashley, I was diagnosed March 2, 2001, with CHF. I was put on 3.25m Coreg BID in the hospital and stayed at that dose for one month, then it was raised to 6.25mg BID. In July they raised it to 12.5mg BID and I stayed on that for 2 weeks, then my doctor raised it to 25mg BID. I experienced lightheadedness with each increase for a few days and if that had been intolerable they would have reduced the dose. According to what I have read here, this is not a common practice and I really don't know why I was increased so fast but I have no problem with this dose because I know my limitations. I hope this helps. May God hold you in His palm, Julie G. lgoehl@dstream.net


Norma's February 6 reply to Sharon's February 5, 2002 - Thanks Sharon, for giving me input on your experience with Hawthorne. I have been taking Cozaar since l999, along with CoQ10, digoxin, furosemide, and lots of vitamins. I don't have shortness of breath anymore but do have gastric problems from time to time - bloating, etc. This I think is due to my husband's love of onions in every dish! I have now put myself on a bland diet and will look up Jon's recipes. We will be travelling to Georgia by car next week and I hate the food in those highway places. Any suggestions, anyone? Norma. Npeace1943@aol.com


Bill C, February 6, 2002 - Hi everyone, We are here at Vanderbilt Medical Center and Rachel's open heart surgery was yesterday. She did great. The hole was repaired and the valves look just fine. She is now off the ventilator and getting out of ICU. Thanks for the prayers and may the Lord be with us all, Bill C. bcraw50049@aol.com


Scott Brown's February 6 reply to Ashley's February 1, 2002 - Hi Ashley, I'm a regular poster now. I'm 32 years old, diagnosed with CHF and an EF less than 20%, last August. Here are my observations with Coreg:
     It can make you feel lousy the first 2 weeks you start a new dose. Hang in there a month before you give it the thumbs down. I have become increasingly tired as the dose has increased. I am stalled at 25mg twice a day (50mg is the next and final step). If you have problems with Coreg, also consider metoprolol extended-release (Toprol-XL). A debate rages (well documented in Jon's beta-blocker section) about which one is better. Current research shows them to be very close in benefit.
     I have noticed a slightly decreased attention span and a "shorter fuse" (less patience). CHF is a frustrating disease and the condition itself is stressful, which is the last thing we need. These changes may not be due to medications at all. It concerns me that we don't really know the outcome of prolonged use of beta-blockers. In theory, beta-blockers should help to slow down or improve a slowly ongoing deterioration. I think the benefits outweigh the risk, even if you stick with a low dose. Good luck, Scott. kitchenerguy@hotmail.com


Scott Brown, February 6, 2002 - Hi, I have been taking Lasix according to daily weight as part of my daily regimen since I was diagnosed with DCM in August, 2001. I take generic Lasix (furosemide). I usually take none, 80mg once a day or 80mg twice a day according to my morning weigh-in. In the early days of my diagnosis, 80mg would open "Niagara Falls" for a few hours (frequent washroom visits). In the past month or so the effect is not very dramatic and sometimes non-existent.
     My cardiologist mentioned that I may be experiencing a problem with kidney function. My blood work turned up low potassium and I was prescribed Slow-K. Since I can't always count on the diuretic effect, I have been concentrating more on keeping my liquid intake under 1.5 litres daily.
     If I take a second dose of diuretic, it always works, but I am concerned I am taking a lot more diuretic to get the same effect I used to get 6 months ago. Has anyone had a similar experience? Any suggestions? Thanks, Scott. kitchenerguy@hotmail.com


Jack D's February 6 reply to Norma's February 5, 2002 - Hi, If you don't like the highway places, then stop at the grocery stores. It's always easy to select the right food at a grocery store. maddjak@hotmail.com


Sherrell G, February 6, 2002 - Hi, I don't post often but "lurk" most days. My condition seems to be getting worse. I am being admitted to the hospital tomorrow for a transplant evaluation. Please add my family to your prayer lists. Thanks, Sherrell. tonygay@worldnet.att.net


Gino's February 6 reply to Joan's February 5, 2002 - Dear Joan, Your therapy can be rearranged without effect on heart rate. For example, raising your dose of Captopril, switching to another diuretic with a longer duration of action, control of sodium intake with diet, control of body weight, etc,... I would remind you that an uncontrolled blood pressure in a diabetic CHF patient is a major problem for the progression of heart and kidney damage. What kind of calcium antagonist do you take? Some may lessen the heart rate (verapamil and diltiazem) and accordingly with the recent AHA/ACC guidelines, except for amlodipine and felodipine, it is better to avoid these drugs in CHF. I counsel to contact your doctor or to find a CHF specialist. Ciao, Gino. (E-mail withheld by Jon)


Amelia's February 6 reply to Jeanette W's February 5, 2002 - Hi Jeanette, My first experience with a breast lump had me very worried. One doc said not to worry and that it looked fine while another said I needed a biopsy. I was so confused that I called the cancer center at NIH in Maryland. The doctor told me that only 2 of 10 lumps are cancer but that every lump needs to be removed. I ended up having the lump out and ther was no cancer, even though I am high risk. Waiting 10 days will not make a difference except the stress you have worrying about it. Good luck and my prayers are with you. Best to all. amelias@erols.com


Jon, February 6, 2002 - Hi everyone, I added another Main Dish recipe today. Jon.


Jon, February 7, 2002 - Hi everyone, I added a soup to the low sodium recipes. Jon.


Tom S' February 7 reply to Scott Brown's February 6, 2002 - Hi, I've been on 320mg per day of Lasix (furosemide) for 6 years now and I have noticed, if you will excuse the pun, an ebb and flow of its effectiveness. I have also been on 40mEq K-Dur daily for those 6 years and for the past 3 years I have also been taking 25mg Aldactone (spironolactone) daily.
     Don't obsess about what is going out. Be concerned about what is staying in. If you notice swelling in your legs, ankles or (in my case) gut, then you are retaining fluids, which again is not in and of itself abnormal, given the condition that causes it. What is abnormal is if you continue to swell up and can't expell the fluid. That's the time to start calling your doctors. I fluctuate on a day by day basis on the amount I void. Also keep in mind there are several methods of discharging excess fluids and the bladder isn't the only one. I have lost a ten pounds in one day to a good case of the trots.
     As far as kidney failure, I do have pains in my kidneys but that seems almost chronic and I even have quite a bit of edema over my right kidney, but that usually has more to do with my posture and sitting up for long periods than how my Lasix is working. I have also found that when I take Lasix is important. I take it first thing in the morning, then I try to take it around 4 or 5 in the afternoon. If I break that cycle I have problems similar to yours. In the meantime, don't panic. I hope that helps. bhigheart@hotmail.com


Nancy S, February 7, 2002 - Hi Sherrell and Jeanette, I just wanted to say that you will both be in my prayers and I know that God will be looking over the shoulders of the doctors who will be attending both of you. Good luck and God bless, Nancy. ns1@alltel.net


Krista L's February 7 reply to Scott Brown's February 6, 2002 - Hi Scott, When I had CHF (I had a heart transplant a year ago), I also started on Lasix. Like you, that seemed to become ineffective after about 6 months. My doctor then switched me to a different diuretic - Demadex - and that worked just fine. You may want to check with your doctor to see if there is a different diuretic that you may try. I also used Zaroxolyn in instances when I needed to get rid of a lot of fluid. That, taken a half hour or so before taking Lasix, really adds to the effect. I see that Jon has some good info concerning this on his CHF meds page, so you may want to check that out. I hope this helps. Good luck, Krista. kristalosey@hotmail.com


Janet, February 8, 2002 - Hi Everyone, This is all very new to me. I came here looking for information and hopefully some reassurance. My story starts about 9 years ago. In 1993 I had an echo and learned I had an EF of 45%. I felt totally fine and was advised to get an echo every so often to make sure my EF didn't go down, and especially to get an echo if I was considering pregnancy. I have gotten my echos over the years, and they have been stable. The last echo I had with an EF of 45% was in October of 1998.
     Well, last Thursday I suffered a seizure and I don't have a history of seizures. The good news is that my brain is fine but the bad news is that I now have a diagnosis of idiopathic cardiomyopathy. My EF via cath is 29%. At this point, I am asymptomatic except for my jumping heart, which I'm sure is partly anxiety. The neurologist and cardiologist do not believe the seizure and cardiac problems are related.
     I am a 39 year old mommy of a 14 month old and want to be around for a long time. I have been too afraid to look at things like prognosis. I am at the very early stages of learning about this condition and am very upset about this new turn in my life. I am terribly frightened. When I was in the hospital I asked my cardiologist point-blank if this was a progressive condition. He was quiet for about 10 seconds, looking all around, everywhere except at me. I swear my husband and I aged 5 years for every second he was quiet. Then the cardiologist finally looked at me sheepishly and said "Yes, it is." That went over like a pile of boulders. So as you can see, I am new to this.
     I am currently on 5mg Altace and will see my cardiologist in 2 weeks. In the meantime, my husband and I are trying to learn what we can. I would love to hear from others who are similar to me. I am also wondering if anyone can recommend a specialist. We live in central Illinois. Thanks so much for the opportunity to spout. I am so very frightened, Janet. jtitus@chestnut.org


Joan's February 8 reply to Gino's February 6, 2002 - Hi Gino, I thank you for your reply to my problem of high BP and low pulse rate. I will ask my doctor to change my meds to help me. I neglected to say that my diastolic pressure was very low and I wonder if my soft heart murmur could be the cause. The calcium channel blocker I am on is diltiazem (Tiazac). I do know that all calcium blockers are not alike and have different effects but am wondering if I am on one because of my arrhythmia right after my bypass. Having this disease is so frustrating because there is so much we need to know. I have an EF of 45% so I feel pretty good except for swollen ankles when I sit too long. Ciao, and thanks again, I'm Italian too! ;-) MMeeks5821@aol.com


John Rice, February 8, 2002 - Hello everyone, I haven't been here in a while and I am just checking in. I was diagnosed 3 years ago with viral cardiomyopathy and have an ICD. They said I wouldn't last this long so I feel lucky. My EF was 8 when I went in and now it is about 25%.I just hope everyone is well. I am going in for a battery change soon, John Rice. djhrice@prodigy.net


Jeanette W's February 8 reply to Janet's February 8, 2002 - Hi Janet, The first thing you need to do is relax and take a deep breath! You came to the right place. I have DCM and had it for 4 years now. You are going to be okay!
     What would you like to know? I know it is very scary and you are not alone! First of all, cardiologists have a knack for not being subtle when it comes to patients like us, who ask if we are going to die anytime soon. Your EF is 29% and that is not bad, mine is only 35%. I know you have a lot of questions and we will try to answer them to the best of our knowledge, which by the way, came from here!
     You need to Read The Manual. That is sort of our bible here. Then you will have a better understanding of what is going on. If you want to talk or ask me anything, feel free to e-mail me. I would be happy to help you any way I can! God bless, Jeanette. jeanette841@yahoo.com


Kathleen's February 8 reply to Ashley's February 1, 2002 - Hi Ashley, In your post, you practicaly described me when describing yourself. I'm age 32 with an EF of 35, which was 25% a year ago. I've been on Coreg for a year and to tell the truth, I had a hard time of it at first. I was very tired and my legs hurt horribly. I found that once my body got used to the dose I was on the symptoms ceased. I also took in a lot more potassium for my leg pain - a suggestion from someone at this site. I am currently on 12.5mg twice a day plus digoxin (Lanoxin). I feel fine these days and I got throught the troubles with Coreg as my body adjusted to it. Good luck and feel well. KMcTim@aol.com


Karen F's February 8 reply to Janet's February 8, 2002 - Hi Janet, I apologize up front for this post being long, but I have much I would like to say to you. I was just recently able to attend a wonderful presentation by my CHF specialist about CHF at a special February National Heart Month Program. Just imagine a CHF specialist spending 1 1/2 hours talking about and explaining CHF in layman's terms and then taking audience questions for another half hour. I took a couple of family members along and it really opened their eyes up and helped them understand what is going on with me.
     My doctor explained the progressiveness of the disease this way: There is no cure and for many people a heart transplant is not feasable for many reasons. This doctor was formerly the head of a transplant team. However, it is a manageable disease. You need to be willing to work with your doctors, stick with the program, and if you have problems don't wait to let them know, and so on. Some people's symptoms improve and that is a victory, but showing stability and not getting worse is also a victory.
     He has a patient who runs in the occasional marathon but is still under treatment for CHF. remember that there is no cure. This patient is asymptomatic for now. Most of his patients don't run marathons, but they do the best they can for their particular circumstances. You may never do what you did at 15 years old again, but you can have a good quality of life and there is a good chance you will live a normal life span. Everything depends on your body, what the underlying cause of your CHF is, and how compliant you are with sticking to the regime.
     How up on the latest news and studies are you? You must be an active partner in your own care. As far as prognosis goes, I was first diagnosed in 1986 when I was 27 years old and I am still around and being a pain in everyone's patootie today at age 43. Feel free to e-mail me if you want to exchange e-mails. This is a scary time for you, but we've all been there when we were first diagnosed. Check out the rest of Jon's site - he has a lot of good information. I can give you some other good web sites to check out as well, if you'd like. Finding a good CHF specialist is your first step in taking charge of your disease. I wish you well, Karen F. ferhoodled@yahoo.com


Karen K's February 8 reply to Janet's February 8, 2002 - Hi Janet, I can feel your fear. I want you to know that yes, cardiomyopathy can be progressive but that it also can be managed. I was diagnosed 11 years ago. I was told I had a year before I started going downhill and within 5 years that I would require a heart transplant. The doctor was basing his prognosis on statistics. My husband looked directly at him and said, "She isn't a statistic."
     First of all, if I were you I would definitely find another doctor. I'm certainly not a doctor, but when I saw he had you on only one medication, I shuddered. Is there a university hospital near where you live? For close to 10 years I was treated by my internist but decided I would try to be seen at the University of Iowa heart failure clinic. I was accepted quickly. I feel fortunate because when I go for my visits there, they say they are happy to see someone that feels good.
     Now, I can't say I feel 100% but I am also 59 years old and haven't a clue as to how a healthy 59 year old feels. My heart and mind tell me I'll never grow old. I am also fortunate that I have always been slim. People are often surprised when I tell them I have grandchildren ages 8 and 10.
     Go to The Archives on Jon's site and read posts from some of the old-timers; I'm one of them. It is understandable for you to be frightened but don't let the fear rule your life. I sound like I'm lecturing but believe me when I say I spent close to 3 years scared to death, certain death was just around the corner.
     Try to maintain a healthy diet, watch your fluid and salt intake, weigh yourself religiously to check for weight gain and fluid retention. My heart goes out to you, Karen. karenk@machlink.com


Gino's February 8 reply to Joan's February 8, 2002 - Dear Joan, Take care of yourself and be positive. Surely, together with your doctor you will find the right solution for your problems. I would remind you that:

  1. to prevent the cardiovascular damage caused by high blood pressure, the most important thing is control systolic blood pressure.
  2. diltiazem like other calcium antagonists may provoke edema overall after long prolonged upright or sitting positions.
  3. about arrhythmia, usually diltiazem is used to control the ventricular rate of chronic supraventricular arrhythmias (atrial fibrillation or flutter). In this case, accordingly with AHA/ACC and European guidelines, beta-blockers in CHF are to be considered the first-line agents if there are not contraindications.
  4. about low diastolic blood pressure and "murmurs", if you don't have a severe aortic valve incompetence, probably your BP pattern (high systolic BP and low diastolic BP - so called isolated systolic hypertension) is an expression of "stiff" arterial tree, usually very common in long lasting diabetes.

Take care of yourself and ancora Ciao! :-) Gino. (e-mail address withheld by Jon)


Autumn's February 9 reply to Jeanette W's February 5, 2002 - Hi Jeanette, I can understand what you are going through. A large mass was found in my breast the 20th of October, 2001 and over the next several weeks several types of x-rays and an MRI were done. I finally had surgery to remove it on December 11. It was not malignant. The doctors had told me the chances were that it would be severe fibrocystic breast disease and it was, but it would not have really been safe to leave it there even though testing said it was probably not malignant. Even for the peace of mind it afforded me, it was good to have it out. I do have some distortion to the breast but it is not very noticable and is not noticable at all under clothing. I know it is stressful to wait but chances are it is not cancer. I will say a prayer for you. Amber-Dawn-Blzn@webtv.net


Joe S' February 9 reply to Janet's February 8, 2002 - Hi Janet, I have been given a death sentance twice. I took control of my life by changing all my eating habits, exercising, and moving to a high dry climate with no humidity. One month ago the cardiologist said I am no longer in CHF. My condition of a bad aortic valve is still there and I am going in for a valve replacement in a few weeks, but everything else is great. He even said my heart is strong. Hey, I'm 63 years old and have lived with this for 57 years, so don't give up hope. Joe S. jes@gbis.com


Joseph P's February 9 reply to John Rice's February 8, 2002 - Hi John, What kind of ICD do you have? The one I have must be powered by the Energizer bunny. It is supposed to last 5 to 6 years. joeandol@yahoo.com


Samir, February 9, 2002 - Hi, As Jon and Ben B have repeatedly pointed out, the 5 year survival statistic is highly inaccurate for CHFers today. I came across a study by a group in Minnesota, I think, that is also referenced in Medline. It surveyed patients that have been on the drugs that we're all currently on (ACE inhibitors, beta-blockers) and found the 5-year statistic to be 90%! I'm very surprised that no one else has come across this same paper.
     Please, all the people out there with idiopathic dilated cardiomyopathy that feel they're cured, think again. I was 26 when I was initially diagnosed and put on the plethora of drugs, which led to an increase in ejection fraction from 15% to 54% and was then told I was fine. Apparently not! At age 32 it came back again, so please stay on ACE inhibitors and Coreg if you can tolerate them. Thanks, Samir. convertin@yahoo.com
 
Jon's note: About that Medline study you read, 90% of what? Sorry to be dense


Dorothy Powell, February 10, 2002 - Hello everyone, I went to my internist yesterday. I learned some information that I found useful and I think you might also. I have changed cardiologists once and it appears I need to keep looking. I went recently to my second cardiologist for a follow-up visit. We were going over my meds when she said she was not convinced that Coreg was any better than atenolol and wrote a prescription for me to change to atenolol. Thanks to the excellent advice I had read at Jon's Place, I did not quit taking Coreg.
     I have an outstanding internist who has been monitoring the large number of meds I take to avoid any interactions. I told her the cardiologist said I should change to atenolol and asked for her opinion. She immediately went to her office to do some comparisons. She came back and said I definitely should stay on Coreg because at this time research shows Coreg is better for CHF patients.
     Also, I had been on a calcium channel blocker prior to the CHF diagnosis. The doctors immediately took me off of it because it can cause problems when combined with CHF meds. I just wanted to pass this along. Best wishes for good days, Dorothy Powell. DPowell806@aol.com


Gino's February 11 reply to Janet's February 8, 2002 - Dear Janet, I am an Italian doctor so I stay "on the other side of barricade." <g> Usually I prefer to not respond to posts like your because here, as you can see, there are a lot of wonderful people that can do it better than me. However, as a doctor I would tell you some things:

  1. The exact medical term for your condition is "asymptomatic left ventricular dysfunction" provoked by DCM. Your doctor was right about the possibility of your illness progressing but I can assure you that patients like you are those that improve better than most with proper therapy (ACE inhibitor and beta-blocker at adequate dosage)
  2. Fear and depression are natural emotional reactions for any person but they have powerful detrimental effects on your heart health - fight them as your worst enemies
  3. Find a specialized center for the CHF treatment and Read The Manual

Thanks to Jon for this wonderful place. You are no longer alone and here you will find a lot of friends ready to help you. I would be happy and honored to be one of them. :-) Be positive! Un abbraccio, Gino. (e-mail withheld by Jon)


Ralph's February 11 reply to Sharon W's February 5, 2002 - Hi Sharon, I have learned as others have, that my patience and focus were affected on high doses of Coreg. I am on 6.25 BID and my ability to remember phone numbers has improved. I suggest that anyone who is on the way up in dose to journal once in awhile all the names and phone numbers that can be remembered, or birthdays, or something that is common. This will establish a basis of your ability to focus and remember. I would suggest after any intense activity and you have had one, that you get as much rest as possible. I think a pet is good because it takes your mind off all the stress that you have and has a soothing effect. Stay away from the hyper dogs for obvious reasons.
     As to the general comments that I am angry with the doctor that did not discover my problem, it is because he scheduled the echo a total of 4 weeks after my diagnosis that I am disgusted. My advice is keep digging on every drug you take, and keep watching for any side effects. I have a bad cough for 5 weeks that my last PCP shrugged off and I think may be because of a ACE inhibitor switched 6 monthes ago. I also wonder what happens to the pregnancy CHF patients and their conditions. Does it go away? ralph_hartzell@hotmail.com


Kristina Jones, February 11, 2002 - Hi, For those of you who do not know me, I go by Kris, and it has been a long time since I have been to this site. I have PPCM and just found out that I have a second heart murmur causing a problem. I wanted to get on here to find my old friends and find out how everyone is doing. A lot of things have happened in the last 18 months and I just lost contact with everyone, but I am sort of back now. I hope some of my old friends (and hopefully some new ones) will e-mail me to let me know how they are. Thanks, Kris. kris123@gamewood.net


Samir's February 11 reply to Jon's February 9, 2002 - Hi Jon, Sorry - a 90% survival rate, compared to the misleading 50% survival rate often quoted, Samir. convertin@yahoo.com


John R V, February 11, 2002 - Hi, I am in desperate need of a CHF specialist in northern California. I am in Stockton and the cardiologist I am seeing is not someone I am happy with. Does anyone have any suggestions? I am going to start calling around but I thought someone here might have some suggestions. Thanks to all and God bless! slvanhoose@aol.com


Joe S, February 11, 2002 - Hi, My doctor gave me 2 meds recently: 50mg Toprol-XL and 20mg Pravochol. I had a horrible reaction to one of these with extreme lightheadedness and hives. Does anyone have any ideas? Naturally I stopped taking them right away, Joe S. jes@gbis.com


Joan's February 11 reply to Gino's February 8, 2002 - Dear Gino, Thanks again for your info. If I need to be on a CCB because of a-fib, should I change to amlodipine? Also, can I be on a larger dose of Captopril (taken at the same time) and a beta-blocker at night? I have an appointment with my family practice doctor on Monday and I will relate to him what I've learned. He's not a cardiologist but I can't seem to find a CHF specialist near me. Thanks again for being here for us with Jon. Ciao, Joan. MMeeks5821@aol.com


Jacky, February 11, 2002 - Hi, I have a question regarding ejection fraction. I have read Jon's and Gino's paragraphs about it. Does the ejection fraction improve with medication or is there some other reason? Jackymwb@aol.com


Janet T B, February 11, 2002 - Dear Friends, First I want to profoundly thank all who wrote to me in person or on the board with your messages of encouragement, information, and advice. Consider yourselves all hugged! Many of you have been where I am, so you know how it feels to know that you are not alone, and that there are many reasons to be hopeful. Thanks for allowing me the space to spin out.
     I have since been buried in information and have read The Manual. Every day I am becoming more and more armed with information to make myself a veritable warrior in this battle I find myself steeped in. I am eagerly awaiting Marc Silver's book, along with a low-sodium cookbook, from Amazon.
     I've never really been overweight except during pregnancy but I'm not exactly a workout queen either. So treadmill, here I come! I guess my only complaint so far is that there are not many low-sodium products available, so it looks like I'll be doing a lot more cooking but it's worth it. I next see my cardiologist on the 20th and I am hoping I will be able to take Coreg (my BP runs low) since it sounds like a miracle drug. We are also still looking around for a specialist - that advice was like a choral refrain and came through loud and clear.
     Finding this site and connecting with many of you has been a deja vu experience for me because 6 years ago I went through this exact same process when my mom was diagnosed with non-Hodgkins lymphoma. The patient message boards and mailing lists were the best sources of information and support, and I became a regular participant. I am so thankful I found this site, and thankful to Jon for creating it. If you don't mind, I would like to send an update after my next appointment on the 20th. Take care and hugs to you all, Janet T. B. jtitus@chestnut.org


Davida S' February 12 reply to Jacky's February 11, 2002 - Hi Jacky, Depending on what is the cause of the heart failure and low EF, a number of things can assist in improving the numbers. Drugs can help, strict sodium restriction helps because reduction in fluid retention doesn't work the heart as hard and allows it to regain its strenth in a natural way. Also, depending on what the doctor says about exercise, it too can strengthen the heart, which in turn will lead to an increase in ejection fraction. A combination of meds, diet, and exercise can be the right prescription to increase the ejection fraction in some patients. It helped my husband come from less than 10% EF to the mid 50s, which is a normal EF. Hopefully, you have a great doctor whose goal is to increase your heart function, which will be measured by the increased EF. The right doctor will prescibe the right combination and treatment for your situation. cavalier_1@msn.com


Ruthie A, February 12, 2002 - Hi to all, I have a question for those of you with type 2 diabetes in addition to CHF. How many of you take Glucophage? Has your cardiologist discussed any risks with you regarding Glucophage and Lasix, or other diuretics? I have been asking various physicians and pharmacists that I know and the subject appears to be controversial. Some CHF docs say they would never allow their patients to take Glucophage, that the risks are too great. Others believe there is no problem with taking Glucophage and that if there are risks, they are rare and the benefits outweigh them. I am curious to see what you have been told. My PCP wants me to take Glucophage and I am not so sure. I just fired my CHF doc, so I cannot ask her. Thanks for your input, Ruthie A. rlaba51@yahoo.com


Vee's February 12 reply to Joan's February 11, 2002 - Hi Joan, Have you ever taken direct-acting vasodilators like hydralazine, Isordil, for your high blood pressure? I've had some similar problems with out of control systolic hypertension despite taking an ACE inhibitor, beta-blocker, and diuretic. Now I also take hydralazine. Since it speeds up heart rate, it counteracts some of the pulse-slowing effect of Coreg. I couldn't tolerate a large dose of hydralazine, so they added a nitroglycerin patch and took me off digoxin. Tha's been working very well. The only problem is that hydralazine has to be taken several times a day. I also split up my Coreg dose into 4 times a day to avoid the rebound blood pressure spikes I used to get as it began wearing off. However, this means that I now take meds 7 to 8 times a day. <sigh> I used to take a CCB (Nifedipine) but had too many side effects, including skipped and irregular beats even though I've never had arrhythmias otherwise. I think the only reason I was on Nifedipine is because it was the formulary drug at my HMO, while amlodipine wasn't. maize2001@hotmail.com


Sharon's February 12 reply to Janet's February 8, 2002 - Hello, Yes, we all understand the fear that you are experiencing. Maybe a better response from your doctor might be "progressive in some patients, stability where the patient is actively involved in her own wellness." Education about this will give you great peace of mind. You have come to the right place. sharewilson@yahoo.com


Helen Otis, February 12, 2002 - Hi all, I apoligize for not writing in a long while but I was in the process of feeling well enough to have a semi-normal life. Well, those days are gone now and I am not sure what I am going to do. I started feeling not so good right before Thanksgiving and my PCP, who specializes in pediatric cardiology, thought it was just a sinus infection with a bit of a cold. Between Christmas and New Year's I developed an infection that landed me in the ER.
     Through it all - the different meds and infections - I was still feeling terrible and I just keep getting worse. Finally an urgert care doc at ASU's acute care clinic realized that there was more going on than met the eye. He called my cardiologist and got me an appointment for the day after next. Dr. Jacobs was quick to respond to what was going on. He ordered a bizillion tests. In less than a week after seeing him, he called and said that my echo showed a blood clot in my heart and he put me on 4.5mg of Coumadin (warfarin). I started the Coumadin on Thursday night and Sunday morning I was back at the ER. I had to have had the worst doc there that night, she had no clue about anything. She gave me a diagnosis of pneumonia and sent me home with an antibiotic. Like the good CHF patient I am, I checked for interactions, and lo and behold, it causes an increased effect with Coumadin and bleeding. Needless to say, I did not fill the prescription. I did not believe that it was pneumonia.
     I went back to ASU's acute care clinic and the doc there went to get my PCP, who was shocked to see how fast I had gone downhill. They both told me to go back to the ER. I had a CT scan with contrast dye of my chest done that night. There was no pneumonia there but they did find something. They found several nodules in my left lung right around where the heart is. I saw Dr. Jacobs the next morning and he said he had no clue what the nodules might be. Apparently he was concerned enough to call a lung specialist himself instead of having a nurse do it.
     I saw the lung specialist the next day, which was last Wednesday. He said the nodules could be Valley Fever or a metastatic cancer. I took the Valley Fever blood test and should get the results by tomorrow. The upshot of all of this is I can't walk from the bedroom to the bathroom without being SOB. I get dizzy and lightheaded, like I am going to pass out. My EF is down to 20% from 30% six months ago. Also, I seem to have developed Restless Leg Syndrome during all this. I have been living on hydrocodone (Vicodin) for the last month. It has been the only way to get relief and a little bit of sleep. I see the neurologist today about the legs. I will keep all up to date. Thanks for being here and letting me ramble on. I am still afraid but it helps to know you are out there, Helen Otis. haotis@worldnet.att.net
 
Jon's note: Hey Helen, Try asking for Ultram. It works pretty well on my RLS and I don't develop a tolerance to it like I did to hydrocodone - it's been working for me for years now at 100mg 3 times a day


Ingrid, February 12, 2002 - Hi to everyone, I just wondered why no one uses the chat room on this site. I have heart failure and would love to talk with others in the same position. I avidly read the message board but there is nothing like a good old natter. I hope some of you will drop in to the chat room. I pop in most evenings but there is never anyone there. highpark@classics55.fsnet.co.uk
 
Jon's note: The chat room is always "open." Anyone can enter at any time or arrange to meet others there on your own whenever it suits you!


Sharon's February 12 reply to Ralph's February 11, 2002 - Hi Ralph et al, PPCM sticks around. Although I understand that most women improve in time with the right meds, any subsequent pregnancies may cause a relapse worse than before. This has happened to me. I have lost 15% function and I am so much weaker than before. My husband is going on a business trip in a few weeks and I have to go too because I will need help in the evenings. Altough I made my decision to have my child, I really took a huge huge risk of leaving behind an unstable family, with absolutely no support group or even life insurance. I would strongly urge PPCM women to rethink having a second child. sharewilson@yahoo.com


Cathleen, February 12, 2002 - Hi, My cardiologist wants to start me on pravachol, another statin drug, because of heart and carotid artery disease, with a history of TIAs. I've been reluctant to go on it because of problems (muscle pain) in the past with Lipitor, and because my cpk is a little high to begin with. I would appreciate any input on your experience with statin drugs. Thanks, Cat. lafsalot2000@yahoo.com


Herbert L's February 12 reply to Ruthie A's February 12, 2002 - Hi, For what it is worth, I take Amaryl (generic name glimepride). It is a sulfonylureas drug. My PCP did a lot of looking before she decided on this for my diabetes. It seems to work well with my CHF. the-honey-do@charter.net


Herbert L's February 12 reply to Sharon's February 12, 2002 - Hi, Your words gave me a really good feeling. Thank you. Had my CHF doc said that to me rather than the look of complete dispair I noticed after he said I had CHF, I sure would have taken it a lot better. The only thing I could think of was that look on his face. It's been 3 years now and words like yours make all of us feel much better. the-honey-do@charter.net


Donna, February 12, 2002 - Hi all, I posted on February 3rd but haven't seen any posts for that day. Something must have happened to them! Anyway, my hubby went for his ablation and a pacemaker on January 29. They did an EPS first because there was some worry about tachycardia and they were interested in putting him in a study for biventricular pacing. He did not have any arrhythmia but he didn't make the study. You had to have been in a-fib for 30 days and he was only in it for 28 days. His doctor even called St. Jude but they would not accept him.
     He has had a-fib since he was 40 years old and had his first heart attack but they put him on medication after his second heart attack in April of last year, several medications as a matter of fact. He had bad side effects to most of them and the last one (amiodarone) almost sent him blind. It took a long time to get the drug out of his system but it did stop his a-fib and that's what took him out of the study. As soon as the medication was out of his system he went back into a-fib.
     Anyway, he still has a pacemaker and had his ablation. He is like a new man. He felt great immediately. He hasn't had to take a Lasix pill since he's been home. He has no more edema, no more congestion, no more SOB. They said to wait 6 weeks before doing anything strenuous. They told him that in about 30 days he may even see an increase in EF. We go to the cardiologist on the 5th of March. The doctor is supposed to do an echo then to see how his EF is. Now if I could only get to feeling as good as he does, it would be wonderful.
     When I first went on Toprol-XL I felt much better but after being on it now for sometime I seem to be slipping back again. I'm going to ask the doctor about increasing my doseage. Someone else here was going for the biventricular pacing study. I think her name was Sharon or Shirley. She was going to have it done on the 31st of January. Does anyone know how she is? I would be interested in hearing about her since I think that study is wonderful and hope she was accepted. I hope everyone is doing okay. gramme@cft.rr.com


Gino's February 12 reply to Ruthie A's February 12, 2002 - Ciao Ruthie, I would express my thinking about your question. Often we think of, and rely on, drugs as "magic bullets" and we forget some very important things:

  1. A regular low-moderate aerobic exercise program improves blood pressure control and has a striking beneficial effect on the control of glycemia (blood sugar).
  2. Reducing obesity (losing weight) has a striking effect on the control of blood pressure and diabetes.
  3. A diet with a moderate reduction of salt content has a positive effect on blood pressure

All together (control of diabetes, BP, and body weight) are very important to control the progression of CHF. These should be the cornerstones in the therapy of CHF and diabetes, but very often they are neglected by both patients and doctors. With a proper life style of diet and exercise, in my experience, one may reduce the dosage of Glucophage and Lasix, avoiding risks in this way. However, I do use this combination. ;-) Ciao, Gino. (e-mail withheld by Jon)


Cindy, February 12, 2002 - Hi, I went to a cardiologist because of swelling and shortness of breath. My PCP sent me specifically to rule out right-sided heart failure. The cardiologist explained to me that the echo would show right-sided failure. He did this because I had mentioned something about the MUGA being better at diagnosing right-sided failure. I agreed to the echo.
     The echo report came back but none of the figures for the right side of the heart were included. Pulse rate and ejection fraction were not included either. I called him on this. The nurse got back to me saying that they do not put in figures for the right side of the heart. I had an echo done a few years earlier and the right side figures were included. The pulse rate and ejection fraction were also included. Have things changed that much that they no longer include the the RA and RV, the ejection fraction, and pulse?
     They did not measure the valves either. My last echo measured the valves, doing amplitudes, slopes, ratios of LA/AOs. What is going on? Obviously the cardiologist misinformed me. There is less information instead of more. How can they determine right-sided heart failure without figures?
     Another question I have is, do echos only tell ventricular systolic performance? How can diastolic performance be determined or can't one tell diastolic function? cig19335@yahoo.com
 
Jon's note: The echo tech measures whatever the doctor orders. If the doctor doesn't ask for it to be measured, it won't be measured. If the doctor does ask that it be measured, it will be measured.


Davida S, February 12, 2002 - Hi, Tachycardia, a-fib, v-fib, what is the difference? Which is the most serious? Which requires or respond to drugs or requires drugs, and which requires an implanted device? I have read the definitions on the site and they all amount to an abnormal heart rate. Also what is the difference between the pulse and the heart rate? I am asking everyone here because I know the voice of experience is with you. When is amiodarone prescribed versus an implanted device? cavalier_1@msn.com


Jon's February 12 reply to Davida S's February 12, 2002 - Hi, This is outside my usual area of study but I can give you some basics. They are not all precisely heart rate problems. Some are truly rhythm problems, others are rate problems, others combine the two. Tachycardia is a too-fast heart rate. Bradycardia is a too-slow heart rate. Fibrillation is an irregular and often too-fast heart rhythm/rate. Atrial fib is when the upper heart chambers display the problem and ventricular fib is when the lower heart chambers display the problem. All can be dangerous but ventricular fibrillation is most closely associated with SCD.
     Pulse is the heart rate as displayed at various points in the circulatory system. If the circulatory system is functioning properly, the pulse is an accurate reflection of heart rate because it is actually caused by the wave of blood "pulsing" through the arteries from the heart's beat.
     Drug therapy for rhythm and rate control is a bone of contention among cardiologists. Ask 3 and you'll probably get 2 different answers on average. My text files include a chart of anti-arrhythmic drug classes with drug names and some short explanatory notes from my own reading. It's the numebr one file under All Other Info. Number 23 in that same list is general a-fib info. In the zip files at the bottom of that same page are articles with lots of a-fib information and amiodarone, atrioverter, cardioversion, abalation info, and more.
     ICDs are generally used when a life-threatening arrhythmia is probable, often ventricular fibrillation. An ICD is often used along with drug treatment to prevent it from firing too often. Pacemakers are often used when an arrhythmia is chronic, life-threatening on a regular basis, or destroys quality of life.
     These are not even the bare basics, I realize, but I hope it helps. I'd recommend downloading and trying out the links available here as well. I haven't updated them in awhile but they are many of the same links I use to answer people's questions. Sorry to stop here but I just had my taxes done and I'm depressed. Jon.


Jon, February 13, 2002 - Hi everyone, I don't know if it will personally affect anyone here, but the FDA is reporting a shortage of injectable Lasix (furosemide) right now. If you need to get "drained" at a clinic or ER, you may get a different drug, like Bumex. Jon.


Jon, February 13, 2002 - Hi everyone, I have bought another domain name and am writing a new version of this site. Don't worry, links will still take you to the new pages so you won't have to hunt for anything while you update bookmarks. It will still be the same information, thoroughly researched and in plain English. I am looking for a sponsor though, to allow me to run the site as a living. I don't know if that will fly but there's only one way to find out. Jon's Place will still be here, but it will be slanted toward Jon while the new domain will contain all the heart info, plus some Jon, of course. <g> The two sites will be heavily interlinked to make it easy to find all my information.
     This will obviously take awhile to put into place so I am asking for your input - all of you. Please e-mail me or post here any suggestions, additions, or changes you would like to see in a new "version" of this site. I don't promise anything but I am definitely looking for all the input I can get. Thanks, Jon.


Helen Otis, February 13, 2002 - Hi, Well, Dr. Grainger (the neurologist), said I have classic RLS. Finally, something that I can do something about. He gave me 0.25 mg of Mirapex to start with and I see him again on March 5 to see how it's going. Also, my PCP called while I was napping with the results of the coumadin blood draw today. My INR is over 9.3. My PCP used the words "your blood is thinner than thin." I should get the results of the Valley Fever test tommorow. Thanks for everything, Helen Otis. haotis@worldnet.att.net


Cindy, February 13, 2002 - Hi, If anyone could answer I would be so grateful. Unfortunately, when I was with the cardiologist and he started explaining things as choo-choo trains, I blocked everything out. My mind couldn't get above the juvenile stuff. All my tests done by echo were normal: Ejection fraction and heart rate. Right venrticular and right atrial readings were not included, even though there were spaces for them.
     Okay, here is the part I don't understand. It says, "concentric left ventricular hypertrophy, normal right and left ventricular systolic performance, a mild left ventricular relaxation abnormality is detected on mitral valve." If tests are normal, where does this concentric LV hypertrophy come in? I see 2 figures that probably have to do with it but neither are considered abnormal. In fact the LVPWd is low, at 0.7 while the IVSd is 1.1cm.
     He didn't discuss anything about the hypertrophy, I found it on the report. Besides, I never got past the choo-choo trains, which blew my mind. I did finally ask him to stop referring to trains and the way they work because he was insulting my intelligence. My heart and body is not a choo-choo and I don't expect such explanations. Thanks again. cig19335@yahoo.com
 
Jon's note: Is he still your doctor? If so, may I ask why? ;-)


Ruthie A's February 13 reply to Gino's February 12, 2002 - Hi, Thanks Herbert and Gino, for your responses. I tried Amaryl and did well on it. Unfortunately I am allergic to sulfa and had a reaction, so we stopped it. I have been watching my diet as best as I can. I have been losing weight and swimming 3 times a week. However, with all those efforts, even though my sugars came down, they did not drop low enough to get by without medication. Now, for many reasons, I have to stop the swimming and find another exercise so there is a chance my sugars will go up somewhat. The questions about Glucophage are mainly to satisfy some nagging doubts in the back of my mind. If it is the only option other than insulin for me, then of course I will try the Glucophage - as long as I can be reassured that there is little or no risk, Ruthie A. rlaba51@yahoo.com


Katherine H's February 13 reply to Donna's February 12, 2002 - Hi Donna, Could you please tell me more about your husband's amiodarone (Cordarone) problems? I started taking it a week ago and am struggling with blood pressures in the low 90s/60s and pulses often in the 50s. Fortunately, I had to endure just one week at 400mg and today was able to go down to 200mg. It certainly seems to be helping the multiple arrhythymias but at the cost of my eyes, I'm not sure it's worth it. Thanks. kholian@metropo.mccneb.edu


Bob, February 13, 2002 - Hi, I have been living with CHF for 8 years. I have a pacemaker and take the appropriate meds for my case. Things are pretty stable. I have had a problem lately that I am not sure is related to my disease. The past few months I have been awakened by the pain from biting my tongue. It is like when you are just going to sleep and jerk. It startles you, but in my case I feel the pain from my tongue. This week the bite showed marks at the tip of my tongue and it hurts. I am wondering if it is a meds problem. I see my doctor on 2/26 and will ask him. I also am trying to get to a dentist to ask him if he has a way to help. Does anyone out there know of this problem? God bless you all. rfbecker@tco.net


Jacky's February 14 reply to Katherine H's February 13, 2002 - Hi Katherine, Regarding amiodarone, I have been on amiodarone for 18 months. The only side effect so far is corneal deposits, which the opthamologist tells me not to worry about. The amio certainly fixed my arrhythmias and evidently is good for my cardiomyopathy, Jacky. Jackymwb@aol.com


Davida S, February 14, 2002 - Hi, I have an urgent request for input from the experienced. My husband and I received some bad news today that affected us both quite deeply. At one point my husband was crying uncontrollably. He has a history of rapid heart beat that shows up once in a blue moon, mostly under physically overtaxing or mentally overtaxing situations. Well, during his crying he suddenly leaned back and appeared to be gasping for breath and patting his chest. I grabbed him and talked him back, which works when I get him to close his eyes and try to concentrate on breathing, as well as patting his chest for him.
     He finally got back to normal but was exhausted and had to lie down, still upset from our news. At one point I picked up the phone and dialed 911 when I thought another episode was back, but he told me to hang up and said that he was okay. I watched him like a hawk and told him to stop this crying and pull himself together because I couldn't deal with losing him. He fell asleep and slept for 2 hours. When he woke up, he was stiff as a board and his neck hurt.
     When this has happened before, the doctor was not concerned, based on his medical history. He has been through every imaginable test for abnormal heart beats and all come back negative until one day while in the hospital they caught a heart rate of 153bpm while sitting. He was also suffering from Coreg withdrawal. Anyway, I know someone here has been through this. Please, I encourage anyone that has a slight clue, to reply. My husband is on 200mg amiodarone (Cordarone) once a day. I will call the doctor tomorrow to report this. Jon, thanks for the reply on abnormal heart rates. It was helpful and I will follow your leads through this site. cavalier_1@msn.com


Jon, February 14, 2002 - Hi all, Donna, Please send me another e-mail address for you. This one - gramme@cft.rr.com - bounced last night when I tried to send you a message. Thanks, Jon.


Rick M's February 14 reply to Bob's February 13, 2002 - Hi, You might want to get checked for sleep apnea. One of my signs was a sort of jerking sensation, as if your breathing and heart stopped, then started up again - which is what really happens with sleep apnea. I was having the problem recently when I saw a story in the New York Times about a French study which showed that people with pacemakers could solve this problem by having their pulse rate increased to 72. I had this done at my last pacer checkup and have found that it works for me. I sleep deeper and have my fewer jerks in my life. <g> Today, I dropped off a copy of the story with my cardio doc, just to keep him up to date. rearadml@iu.net


Michael's February 14 reply to Katherine H's February 13, 2002 - Hello Katherine, My normal BP runs in the 90s/60s since being diagnosed with CHF last June. Also, my resting heart rate is usually 55 to 59 beats per minute. I am on amiodarone and have been since the middle of July because of V-fib. I also had an ICD implanted, which has never fired since being implanted. When my cardiologist talked to me about it he said to consider it the most expensive computer I ever bought and hope that I never have to use it.
     As far as my eyes, I have had to get a new prescription and I have a slight tinge to my cornea, which is checked every 3 months. Neither has changed since the initial visit. I hope this helps. God bless.
     The only thing I am concerned about right now is getting up the courage to put my bio in Who's Who. Thanks again to all who have helped me with this condition. I may not post for awhile because I am leaving to enjoy life for 2 to 3 months. I think I will stay away from ASU and go to the VA instead, while I am in Tucson. Peace, mikes@cpros.com


Ruthie A's February 14 reply to Bob's February 13, 2002 - Hi Bob, I am so glad to hear someone else is biting their tongue, too! Actually, I'm not glad to hear that you are biting your tongue, but at least I am not alone. For the last 6 months or so I have been falling asleep, usually when I am sitting up, only to wake up with horrible pain from biting my tongue. I have to move my mouth very slowly at first or I will not be able to stand the pain. I figured it was because I was sleeping sitting up rather than lying down, and that I just had to live with it. Maybe not? Ruthie A. rlaba51@yahoo.com


Jack D's February 14 reply to Bob's February 13, 2002 - Hey Bob, I understand that certain meds when taken in combination tend to make your tongue longer. I'm sure if you consult your pharmicist, he can work out a schedule on the meds so they won't work in conjunction, and after a time your tongue should shorten back up. In the meantime try to lie on your back or your side so your tongue will for the most part stay in your mouth instead of hanging like it does when you sleep on your stomach. If this doesn't work, there are plastic surgeons who specialize in tongue-reduction surgery, Jack. maddjak@hotmail.com
 
Jon's note: <lol>


Jill M, February 14, 2002 - Hi Jon and all, I'm pinching myself to make sure I'm not dreaming. I was diagnosed with CHF and DCM in September of 1997. Since then I've been on the optimal doses of all the standard heart meds, with Aldactone (spironolactone) added a couple of years ago. I go for six-month check-ups and have generally been well since I was diagnosed but my EF stubbornly stayed in the 20s and my heart size decreased some, but stayed enlarged.
     Well, today's echo showed that my heart has returned to normal size and my EF is 50. The technician called everyone in to double-check the results, and an x-ray confimed that my heart has indeed dramatically shrunk. My cardiologist was practically doing cartwheels. This is not only great news for me but also for others who have seen no change after years of treatment.
     At my last visit my cardiologist said that after all this time I couldn't expect much more in the way of improvement. There is no obvious medical explanation, so perhaps I can call it a miracle. I have been told to stay with all the meds at their current dosage. I still have LBBB and mitral valve regurgitation. What a wonderful Valentine's and birthday gift! (I was 63 last Saturday) Jill M. jillm@iafrica.com


Cheri S, February 14, 2002 - Hello everyone, I don't talk much but I read the posts every day. My husband's company has switched insurance providers. I have been with my doctors for over a year and like them very much. The idea of switching to a new group of doctors is very upsetting to me. I don't know where to start! Do I make an appointment just to see the new doctor, or wait until I don't feel well? Any suggestions would be very helpful. I am very thankful for this site and all you wonderful people who are so willing to help others. Thanks. cmschley1@home.com


Jon's February 14 reply to Cheri S' February 14, 2002 - Hi Cheri, I recently went through this. I called various doctors and made appointments, each time making clear that this was an interview to see if I wanted to consider using that doctor as my PCP.
     This is the time to sit in the lobby and read every word of the agreement they want you to sign at each visit. I turned down 2 doctor's offices because of the terms of that agreement. Especially beware that in teaching hospitals they often demand permission to post pictures and descriptions of any exams or procedures on you on the hospital's web site for medical students to view. These web sites are available to the public at large in every case I have personally seen.
     That agreement can also give them the right to bill you for all charges if your insurer does not pay within 30 days. This is not acceptable since most insurers routinely take more than 30 days to pay. In fact. I never sign my own CHF doc's paper before an office visit. You do not have to sign this. You are legally obligated to pay the doc if your insurer refuses to pay, with or without that signature. Also, the doctor's practice is obligated contractually to follow the same rules in billing and filing claims whether you sign or not. My cardiologist does not have a problem with me not signing since it does not in any way alter the standard procedures. His office staff had a problem with it, but going straight to the doc and calmly explaining why you don't want to sign should take care of that.
     Take a written list of current health problems; personal concerns about previous treatments and conditions; personal preferences in how you want to be treated; drug, food and other allergies; meds list; and brief family health history. Be specific! Do not skip anything on that list once you're there! This is critical to establishing a good relationship with a new doctor right away. It lets him know that you are alert and an active partner in your own health care. It also lets him know that you must be treated as a responsible adult and consulted on everything regarding your treament. Remember that doing this once - no matter how hard it is for you - is what makes the future relationship between you and that doctor smooth and effective! You can do it!
     I finally found a nearly ideal PCP, but he was next to the last on my list, so be persistent. He liked my thoroughness. He sat down and talked as long as I wanted to talk, with no hurry to move to the next patient. I usually have to wait 90 minutes in his office but that's because he takes this kind of time with every patient, and it's worth the wait to me. Here's a kicker: It turned out that he lives across the street from my CHF doctor! <lol> Good luck doctor shopping - that's exactly what it is!
     PS. See this post for more. Jon.


Katherine H's February 14 reply to Ruthie A's February 14, 2002 - Hi, I'm glad to know there are at least 3 of us with this happening. Does anyone have any ideas as to why? kholian@metropo.mccneb.edu


Cindy, February 14, 2002 - Hi all, Jon, thank you. That choo-choo cardilogist will not be my doctor but I do have a problem. I want to know my ejection fraction and want the echo to take for another opinion. Am I allowed to have an echo? Do you know if right-sided heart failure can be diagnosed by the valves? This cardiologist has said that right-sided heart failure can be diagnosed by the valves. cig19335@yahoo.com


Claudia S, February 15, 2002 - Hi, I want to share a few things. I have had cardiomyopathy and CHF since the spring of 1999. I was told it was idiopathic. I never have agreed with that diagnosis because I have no memory of being sick with a virus. My first EF measurement showed 15%, and over the next 2 years went to 30%. The cardiologist thought it should be higher. He decided to order a sleep test for the possibility of sleep apnea. My husband thought this could be a problem for me. I had 2 sleep studies and I do not have sleep apnea, but I do have a sleep problem. I have oxygen deprivation. When I go into REM (rapid eye movement) sleep, my oxygen level falls to 77% with shallow breathing as the cause. In REM sleep you cannot control your breathing, this is the dream state. Your oxygen levels should not go below 90%. A lung specialist thought this might be the cause of my cardiomyopathy and CHF. He has recently had another CHF patient with the same problem I have and he said he will be interested to see if other cases begin to show up. I have been put on a CPAP machine, and I find I have way more energy during the day. I will be eager to see the next echocardiogram but have to wait for 6 months.
     That brings me to the next comment. I have been having a terrible memory problem, which I now know can also be from the lack of oxygen. Well, I have a good system for my medications and I am very careful but somehow I did not take my 50mg Coreg BID for over a month! I actually discovered this at 2:00 AM one morning while reading the posts here at Jon's Place. I urge everyone to be even more careful than I was. Now I am having to start titrating the medication all over again, not to mention it is not at all a good idea to stop medication cold turkey.
     I also wanted to mention that my husband's internist told him to start taking CoQ10. This is the first I have heard of a doctor suggesting it to his patient. My husband takes a cholesterol lowering drug, and this is the reason the doctor told him to take the CoQ10. He did not however, tell him the amount to take.
     If anyone else is on a CPAP machine I would love to hear from you. I only offer this information as a possibility for others to consider, as it might be a contributing factor to the cause of their heart problems. I lurk way more than I post. Thanks to everyone that adds to Jon's Place, especially Jon! God bless. I hope everyone is having some good days, with many more to come! CMSchm@aol.com


Robin Lynn, February 15, 2002 - Hello everyone, Oldies and newbies. Some of you may remember me although it has been a long time since I have written. I have cardiomyopathy, arrhythmias, and now my new disease of sarcoidosis. I was origanally diagnosed with idiopathic DCM, but now I am sure that it could have been sarcoidosis all along. I do know (though no doctor will say it) that the arrhythmia problem has played a large part in the advance of my DCM. I have had one ablation that took care of the constant skips but now I am going into v-tach more and more. I also go into horrible episodes of tachycardia.
     Back in March of 2001 I started to suddenly stiffen in my hands and feet. Within 3 weeks, it was my whole body having pain and stiffness so severe that my hubby had to help me get out of bed. I went to a rheumatologist and my blood work showed that my ACE levels were high. I am now on a steroid but lately am experiencing harder, stronger, longer chest pains. I am also on low dose of morphine and lorcet for breakthrough pain. Does anyone here know if an ACE inhibitor would affect the results of the ACE in the blood that lead to my diagnosis?
     I don't tolerate ACE inhibitors but I think when I was on it in the beginning (1998 to 2000) it may have altered some tests I had. Thanks guys, and blessings to all of you. heartful99@hotmail.com


Henry, February 15, 2002 - Hi, I am in end-stage CHF and my doctor is referring me to another doctor today for consultation on the biventricular pacemaker. Have any of you received this new pacemaker or know of someone who has? I'd like to hear some success stories in addition to any horror stories. I'll keep you posted on what the doctor decides. Hopefully, I'm a good candidate and will qualify. bjr53@hotmail.com


Tracey C, February 15, 2002 - Hi everyone, My company has had a few layoffs recently and it hit me that I hadn't even thought about what I would do if I needed a new job. I was diagnosed while working in my current position. Has anyone had to interview for a new job while having CHF? If so, did you talk about the illness, and what was the feedback? I wouldn't want to start a new position without being honest upfront, but I can't imagine anyone hiring me, even with very few sick days at my current position. Also, I am having surgery on March 12th to remove a suspicious ovarian mass that has been growing for awhile. I am a bit nervous about both the surgery and the results. Thanks so much and have a great weekend, Tracey. 2tcollins@cox.net


Ralph's February 15 reply to Cindy's February 14, 2002 - Hi, Anyone who has any heart problem should have a copy their medical records/ file. How else can you go in and ask questions? I ask the nurse every time I can get a visit, what my pulse and BP are. I was at a patient seminar this week and briefly spoke to a rep for Toprol-XL. The price is much lower than Coreg and since the web has indicated similar results in many ways, why not use it? I don't get to go to any medical conventions! Also, she indicated it has a more even dispersal rate. I have to do further research. Does anyone use this drug? Do you have any side effects? ralph_hartzell@hotmail.com


Cat's February 15 reply to Bob's February 13, 2002 - Hi, Although I've been plagued by tongue biting for years and it was ultimately diagnosed as myoclonic seizures, I seem to recall reading somewhere that syncope can cause seizure activity during the syncopal phase. Has anyone else heard of this? Cat. lafsalot2000@yahoo.com


Jon's February 15 reply to Cindy's February 14, 2002 - Hi, I am not sure I am following you. Bear with me. You asked if you could have an echo. If you mean can you have a copy of your echo report, yes. Most states require that your doctor supply you with a copy of your full medical record from your visits with that doctor. You may have to pay for the copies and you may have to make your request in writing but they will have to cough up a copy. You may have to also get a copy of your medical record from the medical center where the echo was actually done. If you mean, can you have another echo, you can have whatever you can afford to pay for. ;-) Just go to another doctor and say that you are unhappy with the previous doctor's testing and request another echo and a second opinion.
     Right-sided failure and valves was your other question. Echo (doppler) results can be used to help determine if you have right-sided heart failure. When right ventricular pressure increases, the tricuspid valve leaks. An echo can measure right ventricular pressure by reading how bad tricuspid valve regurgitation is. Usually, if you are diagnosed with right-sided failure, you'll then have another test to accurately measure right-sided pressures and volumes, probably a cath, although MUGA or cardiac MRI can be used (see the Tests pages).
     However - believe it or not - a CHF specialist giving you a physical exam and taking your medical history is the best way to get proper diagnosis of right-sided CHF. Often, right-sided failure is actually caused by left-sided failure. We CHFers just can't seem to get a break, can we?! <g> Symptoms of right-sided failure are a lot like those of left-sided failure and include fatigue, feeling of fullness in the neck or abdomen, painful or sensitive (and swollen) liver, ankle swelling, abdominal swelling, and sometimes a real nasty rash like eczema on the lower legs.
      One thing to remember when looking at your medical records is that the right ventricle's EF (RVEF) is normally lower than the LVEF. I get so few questions about right-sided failure that I am rusty. Shame on me! As soon as my pages are rewritten, I plan on further educating myself about CHF in general - a difficult and time consuming thing to do once you get past a certain level of knowledge. I need to do it though and I will. I strongly suggest that you wade through this page. You'll have an edge in understanding your illness and its treatement if you do. Jon.


Davida S' February 15 reply to Tracey C's February 15, 2002 - Hi Tracey, Absoulutely not, don't you dare divulge your personal medical history on a job interview. I know you want to be honest but they will not be honest with you if they decide not to hire you based on your medical history. Unfortunately, some hiring manager may think nothing of it but quite a few will think much of it and the thought of you starting and then having to take a day off or so will make them choose the candidate that does not have obvious heart problems. Also, people's ignorance will encourage the predjudice.
     My husband is blessed. He has been in school for over a year so it bridges the gap tremendously when they ask him why he left and what has he been doing. He can honestly say it was physically taxing on his body and this gave him an opportunity to go back to school full-time. If your CHF will not interfere or prevent you from doing your day to day job responsibilities then you are not obligated to tell anyone your medical history.
     I protect my medical history the way I protect my identification. I am out 3 weeks on disability and my boss does not know what the problem is and respected me enough not to pry, and encouraged me to take care of myself and call if I needed anything. Ask to see a job description and if you can honestly say to yourself you can handle it, then keep the medical history to yourself. If there is something on the job description that could be compromised by your CHF it will be up to you to bring it to the boss' attention, such as lifting 50 pounds, you could say your doctor has advised you not to lift over 25 due to your CHF.
     If you have an unexpected episode, it is no different then anyone else in the office having an unexpected medical emergency. Hopefully your CHF is well managed and will not keep you from doing the things you are qualified to do. Good luck and think over your options well. cavalier_1@msn.com


Noreen, February 15, 2002 - Hi everyone, This is my first post. I was diagnosed with DCM in December of 2001. I think my cardiologist is still trying to figure out how severe it is. I had an echo done in November and January, and he says my EF is 35%, however his partner thinks it's 50%. I'm supposed to get a chest x-ray done before my next appointment and I guess it's to see how enlarged my heart is.
     He said that I would probably need an esophageal echo (TEE) done. Has anyone had that done? Do they knock you out for that? I really hope so. I had a still birth in March of last year and I've been trying to get pregnant but that was before this was diagnosed. He told me to not try at the moment but he hasn't told me that I could never get pregnant. But from the information that I've been reading I have a feeling that's the way it's going to turn out. Any feedback on this? wpowers@texas.net
 
Jon's note: See Jon's 1-22 reply to Diane's 1-18, 2001 Let it load!


Karen F's February 15 reply to Cindy's February 14, 2002 - Hi Cindy, I have right-sided CHF (diastolic). The way my doc explains it to me, left-sided CHF is from when your heart cannot pump hard enough (therefore you will have a low EF). With diastolic CHF, your heart muscle is too stiff to relax enough between pumps. So you can have a normal EF, yet still be in a bad case of CHF. I am a class 3 CHF patient yet my EF is 45%. My CHF specialist chose to relocate to my area because we seem to have a higher percentage of right-sided heart failure in comparison to the total CHF cases that present themselves here than in the general population at large. He tells me that not a whole lot is known about diastolic heart failure compared to systolic heart failure but since he has quite an interest in diastolic failure he stays on top of all the latest tests and studies.
     Which brings me to Ralph's February 15 reply to Cindy's February 14, 2002. I am on 50mg Toprol-XL daily. I tolerate it well with no side effects. I also am on 10mg Altace, 30mg Demedex, MicroK10, Coumadin for a mechanical valve and a multivitamin daily. When I asked him why Toprol-XL and not Coreg, he told me that Toprol-XL is less expensive and while Coreg does show better performance in left-sided CHF patients than Toprol-XL, there are no studies to show that Coreg performs better than Toprol-XL in right-sided CHF patients. As a matter of fact, Toprol-XL outperformed Coreg in certain studies.
     If findings ever come forward supporting the use of Coreg in patients like me, he would absolutely modify my meds. For now, he thinks that Toprol-XL is better for me and my presentation of symptoms than Coreg. He does have many other patients on Coreg so it is not that he dislikes that particular medication, just not in my particular case. I don't have the particular study names to reference but I will say my doctor has always been more than gracious to spend extra time answering my questions and accepting me as a responsible partner in managing my disease. We have a great rapport and I feel very fortunate to have him. frehoodled@yahoo.com


Maria, February 15, 2002 - Hi all, My name is Maria and I was diagnosed with cardiomyopathy about 2 years ago. It came in the form of a cold. When first diagnosed, my EF was 15% and then I went on the fight of my life. I quit my job (no more stress), changed my diet (have lost 30 pounds) and in less than 3 months time my EF was 45%. My life's dream was to have a baby and now my cardiologist has advised that this can happen. Is there anyone out there who has had a baby after being diagnosed with cardiomyopathy? I really can use some advice. Thanks! skyeblue38@hotmail.com

All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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