The paperwork never ends The Archives
February 1-15, 2001 Archive Index CHFpatients.com

Anna N 2-1      thank you
 
Cal R's 2-1 reply to Anna N's 1-31      amitripyline, neurontin, drug-induced CHF questions
 
Jon's 2-1 reply to Cal R's 2-1      amitripyline, neurontin
 
Christy P's 2-1 reply to Ginger's 1-31      driving after ICD implant
 
Ginger's 2-1 reply to Anna N's 1-31      Elavil, chat room sessions
 
Jon's 2-1 reply to Ginger's 2-1      chat room sessions
 
Linda S 2-1      hearing heart in left ear lying down
 
Paul 2-1      don't forget EECP
 
Rieale's 2-1 reply to Ginger's 1-31      ICDs and driving
 
Jon's 2-1 reply to Rieale's 2-1      ICDs and driving
 
Sharon P's 2-1 reply to Ginger's 1-31      ICDs and driving
 
Stephanie M 2-1      anyone else get this fullness feeling & more?
 
Jon's 2-1 reply to Stephanie M's 2-1      could be edema
 
Vee 2-1      immune system problems & trial questions
 
Bill B 2-1      seek others with WPWS
 
Jon's 2-1 reply to Bill B's 2-1      try the Me Too! pages
 
Joy R's 2-1 reply to Jon's 2-1      about elavil information
 
Madelyn J's 2-1 reply to Anna's 2-1      about amitriptyline for pain
 
Ray Tulley 2-1      vocal chords problem questions
 
William 2-1      seek resources
 
Jon's 2-1 reply to William's 2-1      here's a start
 
Anna N 2-2      thanks to all
 
Ginger's 2-2 reply to Linda S' 2-1      lying on left side
 
Jana B 2-2      whole family now has DCM - prayer request
 
Joe L 2-2      fluid retention & docs' attitudes - questions
 
Liz D 2-2      ventricular couplets - should I worry?
 
Paul 2-2      Lousiana CHF docs & trial openings
 
Vee's 2-2 reply to Linda S' 2-1      strong heart beats
 
Virginia P 2-2      update, thanks
 
William B's 2-2 reply to Ray T's 2-1      weird CHF & meds effects
 
Jon 2-2      a reminder and request
 
Jim 2-3      questions about chest pain & inflammation
 
Patrick H 2-3      questions - Vo2, compensating, heart defects
 
Stephanie M's 2-3 reply to Joe L's 2-2      edema everywhere but the lungs - doctors!
 
Jon's 2-3 reply to Stephanie M's 2-3      edema everywhere but the lungs - doctors!
 
Tracey C 2-3      low sodium ham source & more
 
Jon's 2-3 reply to Ray T's 2-2      hoarseness
 
Jon 2-3      Julie could use some e-mail, I think
 
Bob H 2-5      update, amitriptyline, CPAP & more
 
Brandy 2-5      am I getting congested again?
 
Joe S 2-5      common foods can mess me up
 
Karen K 2-5      update, prayer request
 
Linda Z's 2-5 reply to Tracey C's 2-3      ateletatic lung changes
 
Pam A 2-5      questions for oxygen users
 
Rieale 2-5      can women CHFers use birth control?
 
Thelma's 2-5 reply to Patrick H's 2-3      the youth of "cardiac kids" is different
 
Jon 2-5      page updates
 
Bob N 2-5      why not more low sodium products?
 
Jon's 2-5 reply to Bob N's 2-5      one possibility for change
 
Linda S' 2-5 reply to Stephanie S' 2-1      that's edema, alright
 
Linda S' 2-5 reply to Vee's 2-2      thanks for quick reply & more
 
Linda S' 2-5 reply to Ginger's 2-2      thanks for quick reply, weird symptoms, family & more
 
Thelma's 2-6 reply to Brandy's 2-5      menstruation & symptoms, & more
 
Donna Z's 2-6 reply to Rieale's 2-5      birth control pills & CHF
 
Fred D's 2-6 reply to Linda S' 2-1      noises in ear, lying on side, skipped beats
 
Pat 2-6      do I need a new doc? & more
 
Claire E's 2-6 reply to Stephanie M's 2-1      swelling, docs, x-rays & more
 
Frank S' 2-6 reply to Pat's 2-6      doctors, venting & more
 
Mike W's 2-6 reply to Pat's 2-6      doctors, venting & more
 
Jon 2-6      page updates, may be AWOL Saturday
 
Andrea M 2-7      weird heart beats, fainting
 
Jon's 2-7 reply to Andrea M's 2-7      see a doctor now
 
Brandy 2-7      EF adjustment, how do I prevent swelling?
 
David A's 2-7 reply to Tracey C's 2-3      seeking that ham, ARB (Cozaar) question
 
John G 2-7      seek SSD law judge hearing experiences & advice
 
Charlotte's 2-8 reply to Joe L's 2-2      doctors saying no fluid retention - aarrrggghhhh!
 
Tom W 2-8      seek web support group for prostate problems
 
Cathy 2-8      update, questions about BP & stress tests
 
Joe S 2-8      question for diabetics
 
Tony's 2-8 reply to Andrea M's 2-7      foods that start my heart thumping
 
Tony's 2-8 reply to Andrea M's 2-7      things that start my heart thumping
 
Tracey C's 2-8 reply to David A's 2-7      update
 
Will 2-8      transplant expenses site
 
David A's 2-8 reply to Tracey C's 2-8      thanks for ham info, cardiac kids
 
Mike J 2-8      update, am adjusting to Coreg & more
 
Jon 2-8      schedule, also new interactive feature being added to site
 
Jon 2-8      corrected the link in Will's post
 
David A's 2-9 reply to Brandy's 2-5      weight gain, options, & more
 
David A 2-9      question - flax seed and warfarin
 
Donna 2-9      what can I expect with my CHF
 
Ginger's 2-9 reply to Tony's 2-8      dropping ACE inhibitor dose could be risky
 
Janet 2-9      is Coreg associated with diabetes?
 
Joe L's 2-9 reply to Charlotte H's 2-8      coughing, edema not in lungs, & more
 
Stephanie M 2-9      trouble describing symptoms, coping - questions
 
Jon 2-9      some other web sites to check out
 
Lee R's 2-9 reply to Donna's 2-9      be sure you're being treated properly & more
 
Bill D's 2-9 reply to Donna's 2-9      be sure you're being treated properly & more
 
Phyllis A 2-9      e-mail change, update, prayer request
 
Sheryl's 2-9 reply to Janet's 2-9      Coreg, CHF & diabetes
 
Tony's 2-9 reply to Ginger's 2-9      BP, CHF, diet, and some questions
 
Debbie Harmon's 2-10 reply to Sheryl's 2-9      Coreg experience, Lanoxin question & more
 
Ginger's 2-10 reply to Tony's 2-9      question about ACE inhibitor and juice, & more
 
Joe S' 2-10 reply to Tony's 2-9      foods affect my CHF & how I feel
 
Ben B 2-12      where are the old-timers?
 
Bob N 2-12      low sodium pizza
 
Jon's 2-12 reply to Bob N's 2-12      low sodium pizza
 
Claire E's 2-12 reply to Tony's 2-9      second-hand smoke
 
Dan 2-12      questions about L-arginine & heart bar
 
Jon's 2-12 reply to Dan's 2-12      one opinion of the heart bar
 
Tony's 2-12 reply to Joe S' 2-10      effects of food & allergies
 
Tony's 2-12 reply to Ginger's 2-10      potassium, meds, heart rhythm & more
 
Jon's 2-12 reply to Tony's 2-12      potassium and meds
 
Jon 2-13      update on wife and daughter
 
Rick M's 2-13 reply to Ben Bs 2-12      about us old-timers
 
Autumn 2-13      seek diet advice
 
Janet T 2-13      off ACE inhibitor, EF down, seek others' experiences
 
Jeanette 2-13      update, prayer request
 
Jessie 2-13      have PPCM - how much should I exercise?
 
Taavi K's 2-13 reply to Dan's 2-12      L-arginine study & more
 
Tony's 2-13 reply to Claire E's 2-12      reactions to smoke & more
 
Tony's 2-13 reply to Jon's 2-12      ACE inhibitor dose
 
Jon 2-14      new Coreg info site
 
Andrea M 2-14      seek advice on docs & heart rhythm problems
 
Jon's 2-14 reply to Andrea M's 2-14      I hope others reply
 
Ann C 2-14      update, seeking more heart transplant info
 
Jon's 2-14 reply to Ann C's 2-14      sorry there aren't more real stories
 
Bill D's 2-14 reply to Janet T's 2-13      I wonder about that
 
Bill D's 2-14 reply to Autumn's 2-13      getting some appreciation
 
Brandy's 2-14 reply to Jessie's 2-13      PPCM and exercise
 
Davida S' 2-14 reply to Jessie's 2-13      heart failure and exercise
 
Davida S' 2-14 reply to Ben B's 2-12      old timers should check in
 
Davida S' 2-14 reply to Andrea M's 2-7      see a doctor right away
 
Linda O 2-14      does CoQ10 cause problems? & more
 
Maxine's 2-14 reply to Autumn's 2-13      take care of yourself
 
Ophelia's 2-14 reply to Autumn's 2-13      training those husbands
 
Yvette's 2-14 reply to Jessie's 2-13      PPCM and exercise
 
Jon 2-14      Ask Dr. Silver page is up - sort of
 
Ben B's 2-14 reply to Davida S' 2-14      people not posting after getting better
 
Jon's 2-14 reply to Ben B's 2-14      people not posting after getting better
 
Anita's 2-14 reply to Ann C's 2-14      the heart transplant experience
 
Ginger's 2-14 reply to Andrea M's 2-14      please get action taken quickly
 
Jay 2-14      cardiac rehab experience, exercise
 
William B 2-14      Coumadin questions
 
Jon's 2-14 reply to William B's 2-14      PT and INR
 
Autumn 2-15      exercise
 
Autumn 2-15      thanks
 
Brian 2-15      seek low sodium ricotta cheese or substitute
 
James M's 2-15 reply to William B's 2-14      controlling INR on Coumadin
 
Wayne S 2-15      update, potassium with different drugs & more
 
Jon's 2-15 reply to Wayne S' 2-15      potassium with different drugs
 
Sue's 2-15 reply to Ann C's 2-14      life after heart transplant
 
Lee R's 2-15 reply to Andrea M's 2-14      arrhythmias, ICDs & more
 
Kathy's 2-15 reply to Ann C's 2-14      home after heart transplant
 
Andrea M 2-15      after a visit to my doc
 
Jon's 2-15 reply to Andrea M's 2-15      I know this is a broken record, but
 
Wayne Allen 2-15      SSD went through easily!
 
Jon 2-15      page updates
 
Anna's 2-15 reply to Wayne Allen's 2-15      any tips on filling out forms?
 
David A 2-15     has anyone been tested by BioZ?


Anna N, February 1, 2001 - Hi, Thanks to all of you for your replies. The other doctor didn't consult with my cardiologist, so I'm going to call the cardiologist today. I prefer to take as few drugs as possible, as I'm sure is true of most people. The rheumatologist who prescribed the amitriptyline said I should at least try it because if and when I file an SSD claim, it would show that I was trying everything possible. Thanks again for your input. It always helps to hear from others in the same boat. snowyegret7@excite.com


Cal R's February 1 reply to Anna N's January 31, 2001 - Hi, I was diagnosed with Chronic Cryptogenic Sensory Polyneuropathy last spring and was given neurontin for pain and amitriptyline to be able to sleep. The neurontin works very well and the amitriptylin allows me to get about 6 hours of sleep a night, but I am not sure if it is worth the grogginess and dry mouth in the morning. I was diagnosed with CHF the first week in December of 2000, with 30% EF and my heart cath showed no blockages.
     Has anyone out there come down with CHF after taking neurontin or amitriptylin for a neuropathy? My cardiologist and neurologist say that there is no connection. I was running 15-20 miles a week before this all started so I am at a loss as to why I can't do any type of activity without shortness of beath. Any and all help would be greatly appreciated, Cal. ckrobertson@surfnet1.net


Jon's February 1 reply to Cal R's February 1, 2001 - Hi Cal, This is one of those situations where it is possible you have drug-induced CHF but it is unlikely. Amitriptyline is hard on the heart in some people. Possible side effects include heart attack, stroke, heart block, and arrhythmias. People with heart problems are to be watched closely when taking this drug, according to the insert. It can also cause edema, a bad side effect for someone who already has heart failure. I am a bit confused. Neurontin is an anti-seizure drug yet amitriptyline is not supposed to be used in people with seizures. If an anti-seizure drug helps you, wouldn't amitriptyline be a bad idea, generally speaking?
     Neurontin can cause vasodilation, which would not cause CHF but would affect your heart. It can also cause angina and problems with peripheral circulation. Heart failure is listed as a " rare" side effect of the drug. You may never know for sure but I would get a second opinion at the very least. Jon.


Christy P's February 1 reply to Ginger's January 31, 2001 - Hi Ginger, The OK to drive with an ICD implant varies from state to state, as well as from doctor to doctor since some doctors are more conservative than others. Typically, if your stepdad has lost consciousness due to heart arrythmia, the doctors will restrict driving for the first 6 months after implant, or 6 months after the first firing. Some states have specific rules, others do not. You'll have to chat with the EP doctor to find out the specifics for your stepdad and your state. I was restricted from driving only for the first week after implant since I've never lost consciousness. breezip@hotmail.com


Ginger's February 1 reply to Anna N's January 31, 2001 - Hi Anna, I was given Elavil for sleep. I only took it twice since the hangover feeling the next day was not worth it to me. I was only on 25mg so like Jon and a lot of you, I just have strange sleep patterns. I don't know how busy your chat room has been Jon, but it's going to get busier. I have some people from my site wanting a chat room so I have sent them to yours. I myself am going to try to make it to the chats. Hugs, Ginger. angelgin@bellsouth.net


Jon's February 1 reply to Ginger's February 1, 2001 - Hi Ginger, That's cool. I hope lots of people use the chat room here. I probably will only make it chats once in a blue moon. I find myself unwilling to give up family time anymore. However, the chat room is there and open for use 24 hours a day. If anyone sees a usage pattern, I'll be happy to list new times there. Just let me know :-) Jon.


Linda S, February 1, 2001 - Hi everyone, I was first diagnosed with CHF in 1991. I am taking 10mg Accupril, 40mg furosemide, and 600mg twice daily of lopid. I am also a diabetic and hypertensive. I have a lot of allergies to different meds. I have been having a sensation of hearing and feeling my heart beating in my left ear when I lie down. Does anyone else have this problem? This is my first time posting but I read this page all the time. Keep up the good work of encouragement that you do, Jon. God bless and keep you all. linretta@hotmail.com


Paul, February 1, 2001 - Hi all, Don't forget EECP treatments. Paul. pnew@md.prestige.net


Rieale's February 1 reply to Ginger's January 31, 2001 - Hi Ginger, I can't tell you what will happen in your stepdad's case, but I had an ICD implanted 3 months ago and I haven't had any problems driving at all. Don't hesitate asking his doctor. These are things you need to know and I guarantee that you will not be the first one who ever asked that one. Good luck to you and your stepdad. Rieale@aol.com


Jon's February 1 reply to Rieale's February 1, 2001 - Hiya Rieale (and Ginger), It's a matter of danger to others with recent ICD implant. Until your ICD fires, you can't have any idea of what would happen while you're driving when it shocks you. If you lost control of your car, you could kill someone. It's a very touchy issue around here, as seen by previous disscussion about it. I thought Christy's post was really quite good.
     My own thoughts are well-known around here. <g> Americans seem to think driving is a right rather than a privilege. My own daughter will never be able to drive, so I have thought on the issue a lot. I taught her to drive, including a clutch, so she can handle emergencies. However, she will never be able to drive to the video store to rent a movie, go the grocery store in her own car to shop for food every week, or go visit a friend on short notice. She could get a license legally (with a report from her eye doctor that we already have) but she has decided that she would never be a safe driver with her vision problems and she would rather live her whole life in major inconvenience rather than risk the life of a single other person.
     Anyway, in my long-winded way, I am saying that an American can live without driving and in fact, some do just that. There is a definite possibility of risk here, not just for the ICD person, but also for others just innocently driving along, minding their own business. I personally think there should be a 6-12 month no-driving period. If the ICD doesn't fire in that period, then your odds of causing a wreck are probably no worse than the general population, so I say drive all you want. If it does go off and significantly impairs you when it does, I'd say driving is a really bad idea. Jon.


Sharon P's February 1 reply to Ginger's January 31, 2001 - Hi Ginger, I have had my defibrillator since September of 1997. It discharged one time and I have never had my driving restricted. My doctor said it was because I have never passed out. In the ICD support group I attend, several of the seniors in the group have been restricted anywhere from driving on surface road only (no freeways) or for as long 12 months. Blessings, Sharon P. sparker103@home.com


Stephanie M, February 1, 2001 - Hi, I was wondering if anyone with cardiomyopathy has experienced a feeling of extreme fullness above your stomach or pressure at the bottom of your sternum. Also do you find it hard to bend over for any length of time? If you do, what is it? My doctor just said it was interesting. Thanks, and have a good one, Stephanie. moodystephanie@hotmail.com


Jon's February 1 reply to Stephanie M's February 1, 2001 - Hi Stephanie, Absolutely! This was my number one complaint before being diagnosed. It is caused largely by an enlarged liver (retaining fluid) and edema in the abdomen, which are caused by your heart being too weak to supply your body with sufficient blood. In other words, these are classic heart failure symptoms. You need to see a CHF specialist and soon, to get this under control. Jon.


Vee, February 1, 2001 - Hi, Does anyone else get inflammatory-type symptoms with CHF? I've had a run of them myself, including Sjogren's syndrome with dry eyes, swollen lymph nodes, polymyalgia, and more. I think some of the meds, especially spironolactone (Aldactone), make the myalgia worse: neck pain and stiffness, weird headaches. I was really interested in the immunoglobulin study Jon posted on his New CHF Meds page page last week. This was the first time I'd heard that CHFers have very active immune system responses and that new treatment options are being explored for this. How do people get into these kinds of studies and who should? maize2001@hotmail.com


Bill B, February 1, 2001 - Hello all, Has anyone ever had WPWS? fedx44@yahoo.com


Jon's February 1 reply to Bill B's February 1, 2001 - Hi Bill, Try the 5/16/00 entries at Me Too!. Jon.


Joy R's February 1 reply to Jon's February 1, 2001 - Hi, I read with amazement the posts on Elavil. A neurologist put me on Elavil several months ago because of twitching and restlessness in my sleep. After reading the posts, I looked it up and all it said was not to take it if you have a heart condition. I couldn't find out why, and wonder if you know the answer. For the past several months I have not done as well as I had been doing, with more shortness of breath, exercise intolerance, very fast heart rate, and chest pain. I have good coronary arteries so I shouldn't have chest pain. Now I wonder if it is the Elavil. I am going to stop taking it. It hasn't seemed to work anyway, I'm still not sleeping and I still twitch at night. It seems to me a neurologist would know better! How would we all live if not for the information gained on this site? wapalaremi@home.com
 
Jon's note: Joy, please talk to your doctor before stopping the drug. Stopping some drugs suddenly can be a very bad idea!


Madelyn J's February 1 reply to Anna's February 1, 2001 - Hi, I was also given Elavil for pain several years ago, due to a damaged nerve in my hip. It was prescribed by a pain management specialist also on staff as an anaesthesiologist whom I sought after having bad experiences with all the standard painkillers and anti-inflammatory drugs. He explained that we would try Elavil because it alleviates the chemical effect of chronic pain on the nervous system. He explained that people who suffer chronic pain become susceptible to a vicious cycle where the body stops releasing a chemical (sorry I forget the name, possibly serotonin) that ends the pain sensation. Anti-depressants somehow interrupt that vicious cycle. It sounds kooky but it worked, and I took a ridiculously low dose. madelyn29@juno.com


Ray Tulley, February 1, 2001 - Dear Jon, I'm a long time reader, first-time poster. I'm male, age 70, have had 3 heart attacks and 2 bypass surgeries, with the second in April of 1997. I was diagnosed with heart failure in July of 1997. I was evaluated for a heart transplant but was told to continue on medication, exercise, and sodium restrictions. I take the usual meds: diuretics, Coreg, Aldactone, Ccoumadin, and Pravachol. Things went well until May of 2000 when I was hospitalized with a-fib and then in October to flush out fluids.
     I am now a participant in the COMPANION study as of about 6 weeks ago. I have a pacemaker with 3 leads in an attempt to achieve biventricular synchronization. So far things seem to be going well. About September of last year I started to get a very hoarse voice. Sometimes it was difficult to talk and be heard. I went to an Ear, Nose and Throat doctor who said my left vocal chord is paralyzed but my right one is okay. I have had 3 CT scans and can find no physical reason for this problem. My cardiologist theorizes that my enlarged heart is pressing on a nerve controlling my voice box and unless my heart goes back to normal I'll continue to have the problem. Even if the heart does shrink, that nerve may be damaged.
     My question is, "In your research have you come across this kind of situation? If so, what if anything has been done?" Any help you provide will be appreciated. Incidentally, keep up the good work. You have helped a lot of people. raylentul@aol.com
 
Jon's note: Hi Ray, this is a new one on me. I'm sorry but I have not run across this before. I will ask a couple of CHF docs who help me with the site and get back to you, though.


William, February 1, 2001 - Hi, I had a heart attack (viral?) that wiped out about 80% of the usage of my heart. I am 58 with non of the 5 factors that produce CHF or heart problems. I have not been able to find much information on this type of CHF. My plumbing is good but the pump went bad. I would appreaciate any links to any places for more info. Also, what is the expected mortality rate of a heart that is working at 22% not considering any variables. Many thanks for any leads, William. willdet@juno.com


Jon's February 1 reply to William's February 1, 2001 - Hi William, I also have "good plumbing but a bad pump." My EF was 13% when diagnosed and here I sit 6 years later. :-) I'd recommend The Manual for starters and then this page. Jon.


Anna N, February 2, 2001 - Hi, Another thank you to all of you who added more input on the Elavil question. My cardiologist said it was okay to take it, but I'm still giving it more thought after reading other people's experiences. I'm just not sure that adding a drug which isn't absolutely necessary is a good idea, especially when it has such potential to cause problems. I also want to thank Jon for maintaining this site for us. It has to be a lot of effort, but it is greatly appreciated. I visit every day. snowyegret7@excite.com


Ginger's February 2 reply to Linda S' February 1, 2001 - Hi Linda, I can feel and sometimes hear my heart beat if I lie on my left side. I think you're going to find a lot of us have this. My doc says it is due to having an enlarged heart. Is that the real answer? It's anyone's guess. I know it can be nerve racking so I just try to stay on my right side. If it gets too bad I lie on my stomach and that usually makes it better. I hope this helps. Hugs, Ginger. angelgin@bellsouth.net


Jana B, February 2, 2001 - Hi Jon, It's me again. Last night my youngest son was also diagnosed with cardiomyopathy. As many of you know, I am on the list for a heart transplant, and my mom died of DCM, as did my grandma. My oldest son was diagnosed with it in November andis awaiting a transplant evaluation, and now my youngest son. The doctors told me not to tell Philip anything yet until test results come in today to see how bad it is. I am rebuking this diagnosis in him! I have come against all generational curses and am believing those doctors are wrong! Please add him to your prayer lists. Thank you, Jana Byers. JByers4u@aol.com


Joe L, February 2, 2001 - Hi everyone, I just got out of the hospital (small local medical center) last night. I had to have IV diuretics to drain fluid and I lost 10 lbs in 36 hours. I went to the ER in the middle of the night because I was coughing like crazy and was short of breath. I also couldn't get my wedding ring off. When I went in they did a chest x-ray and the ER doc said I had just a little fluid in my lungs and he was going to send me home. I decided to question his rationale. My O2 was ranging 92 to 94 and I asked him what his explanation was for that and he had none. I showed him my stomach, which looked like I was pregnant, and asked him to try to pull my ring off and he could not. So he decided to give me Bumex.
     The doc said he didn't think I would pass a lot of urine. Within 2 hours I passed about 25,000 ml so he decided to admit me to get me completely drained. I just do not understand this chest x-ray obsession, that if it doesn't appear that your lungs are full of fluid then you are not having a fluid retention problem. Has anyone else experienced this chest x-ray dilemma? Sorry for venting but I would like to see how common this is, Joe. JTLucido@aol.com


Liz D, February 2, 2001 - Hi, Does anyone here know what a ventricular couplet is? I know it's a type of arrhythmia. Mine was detected in the recovery phase after I failed to complete the ECG stress test. Unfortunately the cardiologist was not attending so the CRNP there suggested I take the test over again some other time and try to get to the target heart rate. My PCP didn't think it was anything and I need her permission to get another referral. I've already been diagnosed with COPD recently and of course now I'm concerned about the condition of my heart. Do you think I need to be concerned enough about it to push my PCP for another referral? I know I'm a greenie here but any helpful advice would be appreciated. Thanks, Liz. MaryAstor@aol.com


Paul, February 2, 2001 - Hi, In Shreveport, Louisiana, Dr. Jalil Ghali at Willis Knighton hospital is, I believe, a heart failure specialist. He is the principal investigator on a biventricular pacing study being done there. I had an experimental pacemaker implanted 10/10/00 and have been feeling good since. Dr. Scott Wiggins also works on the Companion Study, as it is called, and at my last checkup asked if I knew any one else who might want to particpate in the study. Anyone within commuting distance of Shreveport can contact Dr. Wiggins and check on the details. Ghali and Wiggins are both in the Arklatex Cardiology group at Willis-Knighton in Shreveport. pbstep@bayou.com


Vee's February 2 reply to Linda S' February 1, 2001 - Hi Linda, I used to hear my heart beat crashing like the ocean when I was trying to get to sleep. I'd also see the pulsations in my left eye's vision. That made it a little hard to read! I think it was from hypertension. Is your blood pressure under control? maize2001@hotmail.com


Virginia P, February 2, 2001 - Hello again after a long time, I have not posted for quite awhile, in fact since my son was hurt in a hunting accident and I requested your prayers. I am sorry it has taken me so long to reply to e-mails. This accident occurred in October of 2000 and he is finally on a good track now. Some of you may not know but he was hunting in Wyoming when a vehicle turned over, landing on his head, pinning him against a tree. Needless to say, he had a fractured skull and some other problems. For awhile he lost the sight in his left eye. He was deaf in his left ear and had some paralysis on the left side of his face. He has had full recovery of his hearing and is at this time beginning to have a little sight in his eye and is just beginning to be able to blink a little and actually move the eye from right to left.
     I want to thank all of you for your prayers and thoughts during this ordeal. He still has a long way to go but he is at least beginning to see some progress. He is just lucky to be alive and making progress. His little girl thanks God every day for bringing her daddy back safe and sound. We also thank God and all you good people who put him on your prayer lists. Prayer is such a wonderful way to recovery. Again, you have my deepest thanks and love, Virginia Pauline. vpauline@hemc.net


William B's February 2 reply to Ray T's February 1, 2001 - Hi Ray, I joined the ranks of CHF on 12/26/00 with a viral heart attack along with a blood clot in the front that the doctors are trying to get to fiber over so it will not break off. I get tired just talking and my voice gets really hoarse and then just goes away. I never had that happen before. Also, my left ear just goes into a well for lack of a better description, and the echo stays for several minutes before it goes back to normal. I just accepted this as a side effect of CHF and the decrease of oxygen to other parts of my body. The echo is sort of like the change in pressure as you go into the mountains or change altitude. I have found a lot a really weird things that CHF and the medicine do to your system. willdet@juno.com


Jon, February 2, 2001 - Hi everyone, Please remember to check out the loved ones' forum today. If possible, please also send replies there via e-mail; If I have another bad day tomorrow, posts may not make it up. Thanks, Jon.


Jim, February 3, 2001 - Hello, Since I had my heart surgery November 29, 2000, I have had to be readmitted twice with fluid on my right lung. The first time they took off 2 liters of fluid. The second time, 2 weeks ago, I also had an inflamation in the pleural cavity causing a lot of pain in my chest. They gave me prednisone, and the inflammation cleared up. I finally came off the prednisone this past Wednesday. However I woke up yesterday morning with the same pain in my chest that I have been having. I went back to the doctor and he again put me on prednisone. He is going to keep me on it for about 6 weeks and slowly reduce it.
     My question is, "Has anyone else experienced this same problem? How long did it take until you no longer had to take prednisone, and were there any side effects?" I appreciate any and all info. Thanks, Jim. jimhall@alltel.net


Patrick H, February 3, 2001 - Hi, I had a congenital heart problem when I was born. I had a VSD, a leaky mitral valve, and right bundle branch block: Great start for a baby! I had my first surgery in 1959 to repair the VSD, my second surgery in 1987 to replace my mitral valve and my first pacemaker, my third surgery in 1991 to replace the Medtronic mitral valve that got infected with a St. Jude mitral valve. I have had a transplant evaluation and failed all the tests except for the <Vo2 test.
     My question is, " Is a person with a congentital heart problem more able to compensate for lower Vo2 levels?" I have always had trouble breathing with exertion. As I get older (47 years), I get more fatigue symptoms. My EF = 13% and my last months Vo2 = 17. Any response would be appreciated. Hettle@aol.com


Stephanie M's February 3 reply to Joe L's February 2, 2001 - Hi Joe, I don't have any answers for you but I know exactly what you're talking about. The doctors listen to my lungs and say they sound fine, therefore I am not retaining water. I know that I am and if I take an extra diuretic I know I'm right. I am glad that you were persistent. Stephanie. moodystephanie@hotmail.com


Jon's February 3 reply to Stephanie M's February 3, 2001 - Hi Stephanie, I get edema everywhere but my lungs too. A CHF specialist will also manually check your shins and ankles with you reclining, then place you on an angle and carefully check your jugular vein. He will also manipulate the area of your liver with his hands to check for fluid retention there, and then listen to your heart six ways from Sunday. All these physical exam indications are added to what he hears in your lungs and what he knows about your history to determine whether he thinks you are retaining fluid. This is another reason for having a CHF doctor.
     Good ER docs definitely exist (one saved my life when CHF almost killed me - my doc was saying, "No way" <g>) but they are few and far between. Radiologists are just as bad, unfortunately. They believe lung pictures without considering the patient, and his history and experience living with the illness. Why? I have no idea. Jon.


Tracey C, February 3, 2001 - Hi everyone, This has probably been mentioned before but I found low sodium Black Forest ham at Trader Joe's. It still has about 160mg per slice but they're pretty good sized slices. Also Jon, I need to know if you have any information or have heard of atelectatic lung changes. I apparently have this and was simply given a radiologist's report and haven't been able to see a doctor yet. I'd really appreciate any information you have. It's on the base of the left lung. Thanks so much, Tracey. nuttytandt@aol.com


Jon's February 3 reply to Ray T's February 2, 2001 - Hi Ray, Here's the first reply I got from my CHF doc friends. Marc Silver, Gino Tarantini and Charles Porter are all great (and all published) CHF specialists and thay all help me with these questions. I sort of rotate between asking them so no one of them gets too many in a row. Here you go:
     Left atial enlagement can press on the "Recurrent Laryngeal Nerve" which runs just where the trachea (windpipe) splits into the two main bronchi (windpipes that lead to each lung). This pressure can cause hoarseness. The main thing is to better diurese that person.
     Jon again. To diurese just means to better reduce the fluid retention in that person, usually with diuretics. Jon.


Jon, February 3, 2001 - Hi everyone, Once again, I ask you all to visit the loved ones' forum and read Julie's post there. She could surely use some e-mail, guys. Jon.


Bob H, February 5, 2001 - Hello Folks, It has been quite awhile since I posted here and I am sorry about that. I haven't even been making the chats on Wednesdays but I noticed that the Thursday chats are going to start again and I should be able to make them. I haven't been doing that great lately but I am still alive, so that is a plus in anyone's book. <lol> I have a new e-mail address since I finally got sick of AOL booting me off the air all the time and I am now connected via cable.
     I don't know whether I told y'all or not the last time I posted that I am using a CPAP with oxygen every night now due to severe sleep apnea. I am also having quite a bit of difficulty breathing, sometimes during the night. This is being caused by my nose closing up on me during the night with the oxygen on. At least that's what the doc attributed it to.
     I noticed a conversation concerning amitriptyline and also wanted to make a note that I had been on that drug and several others of the same type and they really messed me up quite a bit. My wife woke me up one night because I was rearranging the bedroom furniture for some reason but I didn't know why. Some of these drugs can do a number on you. Well folks, I just wanted to let y'all know what was going on at this abode.
     Oh, I did forget the most important and that is that I just finished having another nuke stress test but don't have the results yet. Of course I had to go back for the second part, as I flunked the first part. I guess I didn't study hard enough, huh? Y'all take care now and try to enjoy life to its fullest as life is just too short. See ya at the chats soon, love y'all, Bob H. oldgoat378@knology.net


Brandy, February 5, 2001 - Hello all, I have PPCM since December. I went for an echo, which said that my EF was now 56% and my heart was no longer enlarged. I still watch my sodium and fluid, and take metoprolol and zestril.
     Last Wednesday I noticed a little swelling in my ankles. The next day I started my menstrual cycle so I don't know what to blame the swelling on; Then I started sneezing a whole lot the next 3 days, and for some reason developed a cough, which I am not sure if I should contribute that to the sneezing or the CHF.
     I thought I was getting better. I called my CHF nurse - who hasn't called me back yet -and I was just wondering what you all think. Could I be congesting again? Or am I just worried about it too much? The swelling isn't too bad, about a 2 on a scale of 1-10. My shortness of breath isn't too much different from normal either. I wish my nurse would call back. If I am congesting again, does that mean my EF could have gone down again? I would appreciate any input! Thanks, Brandy. brandylee1114@aol.com
 
Jon's note: How is your daily weigh-in weight?


Joe S, February 5, 2001 - Hi, I have been watching what I eat for 2½ years now. The other day though, I was tempted by, and ate, an ice cream sandwich. All the old symptoms returned within hours and I spent hours back in bed. When I read the ingredients, the list was about 2 inches long. Who would guess an ice cream sandwich would be loaded with chemicals? Then Thursday I ate a hamburger at Marie Calender's and it happend again. What in the world could they put in a hamburger? I guess I have to keep my vigilance up at all times. Joe S. jes@pronet.net


Karen K, February 5, 2001 - Hello All, I haven't posted in awhile but would like to ask that you keep my daughter Wendy in your prayers. She has been diagnosed with breast cancer and is having a lumpectomy along with lymph node removal tomorrow morning. She is only 35 years old and has 2 children. I realize she is my daughter but I have to say she is an awesome person and mother.
     Sometimes it is hard to understand the reason why God chooses to give so many burdens to one family. If you recall, my husband was diagnosed with MS last fall. He is doing well and for this we are quite thankful. With the exception of having problems keeping my potassium level at a normal level (it's still high), I am doing well. I pray only for the strength I need to deal with all this and that I can be there for my daughter. I also pray that the stressors have no further affect on my heart since I tend to be a worrier.
     My doctors have referred me to a dietitian to discuss a diet that will hopefully allow me to decrease my potassium level. I just discovered yesterday that the 2 shredded wheat biscuits I've been eating for breakfast forever contain 130mg of potassium each. Today I had oat bran. I am pleased with recent blood work that showed my cholesterol actually dropped to 195 where it had been about 215 for quite some time. I attribute this to the fact that I have been taking since last summer 1000mg flaxseed oil in capsule form. Right or wrong, it's the only reason I see for the drop.
     Again, please keep my daughter in your prayers, Karen K. karenk@machlink.com


Linda Z's February 5 reply to Tracey C's February 3, 2001 - Hi Tracey, Ateletatic lung changes show that your lung is starting to collapse. There are a number of reasons for this. Sometimes with CHF we just don't take deep enough breaths to keep the lungs fully inflated or pain keeps us from taking that extra long filling breath. It can also indicate that fluid is beginning to accumulate. It can also be related to pulmonary illnesses like bronchitis. Changes such as these call for further investigation. Linda Zame. zame@earthlink.net


Pam A, February 5, 2001 - Hi Jon and everyone, This is my first time posting. I have been reading the messages for over a year now and don't feel so alone! It seems like I have suffered most of these symptoms at one time or another. I have a question about using oxygen. I use oxygen almost 24 hours a day except when I go to a store or sit outside. I began using it to see if it slowed down my having to have phlebotomies every 4 weeks. Then I got carbon monoxide poisoning on top of a severe allergy attack to a rabbit. I was diagnosed with CHF about a year and a half before all this. I was beginning to feel better slowly when I had the allergy attack. Since then, I have been using the O2 and am wondering if others use it. Does it make others feel dingy or forgetful? Do they get dependent on it? Would someone who uses O2 reply with their experiences? Thank you, Pam A. karuk46@yahoo.com


Rieale, February 5, 2001 - Hi, I will be asking my doctor the same question next week but I thought I'd give you wonderful folks a stab at it first. I had been on birth control pills until a year ago. That was when I was diagnosed with DCM and CHF, and was eventually found to have a pulmonary embolism. I've responded extremely well to medications and 3 months ago I had my ICD implanted as part of the InSync trials, but I am now in a relationship where birth control is a necessity. Do any of you know whether there are problems with CHFers using certain forms of birth control. I am on Lasix, digoxin, Coreg, K-dur, spironolactone, accupril and aspirin. I'd appreciate any help. Thanks. Rieale@aol.com


Thelma's February 5 reply to Patrick H's February 3, 2001 - Dear Patrick, That's an interesting question. I'm not sure if I have an answer for you but being a "cardiac kid" like yourself, I believe we just got used to feeling a certain way. Remember, we were never normal as far as our cardiac status. My parents never limited my activity. Even though I had corrective surgery I was never able to run long distances in gym class and found myself getting winded much easier than others. I'm sure my <Vo2max was much lower than others but I didn't know what normal felt like and just kept going. Docs never measured this in me and basically left me alone because I was "doing so well." This was all in my preCHF days. With chronic arrhythmias that were never treated, looking back, I believe "doing so well" was not the case. I believe all of this has caught up with me over time and led to my IDCM and CHF; Just a thought. I would love to hear what other cardiac kids have to add, Thelma, Tetrology of Fallot, IDCM, CHF. Tcull@prodigy.net


Jon, February 5, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Let's Cook!
  2. Wallpaper

Jon.


Bob N, February 5, 2001 - Hello everyone, I was just wondering: With all the people who have CHF in this country and all the people who are supposed to be on sodium restricted diets, why are there not more products for us out there? I know you can order different things through catalogues but they are very expensive. I have found a lot of products in various stores that are low sodium. You would think there would be more things at affordable prices. Most CHFers are on less than 2000mg sodium intake per day, which is not much. You would think that supermarkets would help us out more and advertise so we know they have low sodium products. I am just wondering why. Good luck to all. bignick42@aol.com


Jon's February 5 reply to Bob N's February 5, 2001 - Hi Bob, Supermarkets are profit driven. Unless people on low sodium diets make their desires known to each store manager, why would they consider carrying those products or advertise them if in stock? I am very vocal with my local store managers and they now carry a wide variety of low sodium products. Being vocal face-to-face has also brought about a check cashing system change, and more handicapped parking spots at my store. They want to have happy customers because happy customers spend more money there. Speak up! Take that American Heart Association statistic of 4.7 million CHFers in the USA last year with you to let them know it's not just you! Jon.


Linda S' February 5 reply to Stephanie S' February 1, 2001 - Hi Stephanie, I have the problem that you described real often. As Jon said, it is edema build-up. It is a very miserable feeling. I swell up all over, even my face! I used to get so discouraged because my doc said he didn't know why I was swelling up. That was before I found a doc who discovered what was wrong. After hearing my symptoms and checking my legs, ankles, and feet, he asked me if a doctor had ever told me I had CHF. I said yes but he said it was caused by my high BP and to go back to my family doc. He said I should have been treated more aggressively. You need to get this taken care of ASAP.Take care, Linda S. linretta@hotmail.com


Linda S' February 5 reply to Vee's February 2, 2001 - Hi Vee, Thanks for responding so quickly. My blood pressure is staying well controlled with meds and a low sodium diet. When I'm retaining fluid, which seems to be more often than not here lately, it is a litte higher but still within normal range. My doc doesn't tell me much. I guess I need to see a CHF specialist but I don't know of one in my area. I guess I need to find one. Anyway, thanks again. God keep you in his loving hands, Linda S. linretta@hotmail.com


Linda S' February 5 reply to Ginger's February 2, 2001 - Hi Ginger, Thanks for replying to my message so quickly. Sometimes I feel as if I'm alone in some of these crazy symptoms I have. Boy, it sure is a relief to know there is someone who knows what I'm talking about. I'm truly grateful to have someone to talk to when I need to. I don't want to burden my family with my uncertainties. They really don't understand my illness and I don't waste my breath trying to explain that some days I can barely drag myself out of bed. I'm not going to give up, though. God will see me through this. On a more cheerful note, I'm thankful I've found this site! It is a godsend. God bless you, Linda S. linretta@hotmail.com


Thelma's February 6 reply to Brandy's February 5, 2001 - Dear Brandy, My symptoms worsen significantly right before and during my menstrual period. I noticed this even before I was diagnosed with IDCM and CHF, and of course now it's worse. You may still be very sensitive during this time and should let your doc know. Keep hounding the nurse. Maybe you need a diuretic. Good news about your EF! Thelma. Tcull@prodigy.net


Donna Z's February 6 reply to Rieale's February 5, 2001 - Hi Rieale, Yes! You are at a much greater risk of developing a blood clot that could kill you from taking birth control pills, especially since you already had a clot. Have your partner use a form of birth control and please check with your CHF doctor. I used birth control for hot flashes after I developed CHF but I stopped the birth control because of the risks associated with it, Donna. dzak@worldnet.att.net


Fred D's February 6 reply to Linda S' February 1, 2001 - Hi Linda, I also have the noise in my left ear. I have it even when I am not in bed. Sometimes I can hear a skip in my heart beat and was advised by my doc that is when the heart beats too quickly. If it happens only every so often it is not a problem but if it is frequent and the missed beats increase, I need immediate help. I don't like the sensation but I just try and forget about it. I do believe that lying on your right side will help. deal@midusa.net


Pat, February 6, 2001 - Hi, Is it normal for your BP to be up and your heart rate to be down? And when your BP is down, your heart rate is up? My BP has been 148 over 100 with pulse of 44 to a BP of 94 over 64 with a pulse of 99 for the last 2 weeks. I went to the doctor today but he acted like this was normal and said everything was okay. I have been having heart beats that are really scary. At times I feel like I don't have any at all and feel like I am dying. My doctor said it comes with my condition.
     I have CM, CHF, TIAs, and severe left ventricular dysfunction with an EF of 20 to 25%. They say I need a heart transplant. The doctor said I have 25% of my heart muscle left and there is no way of getting it back. Does anyone have this happening to them? I have had pains in my arms and tightness in my chest. This is the second time my doctor told me I would not feel pain - I would just stop breathing and my life would be gone (without a transplant). Do you think I might be a little crazy for still going to him? I know this sounds crazy but I feel better now. Thanks for letting me complain, Pat. progers53@aol.com


Claire E's February 6 reply to Stephanie M's February 1, 2001 - Greetings all, I hope all is well. I get the fullness in my abdomen too and it was one of my very early symptoms back before I was even hospitalized the first time. I could hardly bend over to change the baby's diaper without gasping for breath and feeling like I was going to pass out. It was so awful! Now I try very hard not to get to that point but if I do, it's crash time. I rest, rest, rest! I eat very little, drink clear fluids - low sodium of course - in moderation, write letters, and read if I feel up to it. I also meditate more than usual. I take more diuretics and potassium, which I have cleared with my doc.
     It is a scary place to be. My face swells up too and I look like a pumpkin! My hands swell but my feet hardly do. I swell in weird ways. Stephanie, you certainly are not alone! I also have been told that my chest x-ray wasn't bad and my lungs sounded okay when I was so short of breath that I could hardly talk and my fingers looked like sausages. However, because the old ankles weren't particularly bad, I was "overreacting." Boy, did I go off on them! You've gotta know yourself and your symptoms. If your doc isn't on call that day drive them crazy till they believe you! Just one more cause of stress for us. Thank goodness for this site! Love and peace, Claire E. weezey62@aol.com


Frank S' February 6 reply to Pat's February 6, 2001 - Hello Pat and everyone, I have not posted for awhile and Pat has reminded me what I believe most of us are faced with. No Pat, you are not crazy, not even even a little bit. If your doctor can't understand and empathize with you, find a new doctor. The older I get, the less tolerant I am towards most doctors. Just give any of them a small taste of what we go through and it's crying in Wimpsville. My perception is that a certain amount of hypochrondia exists in most people who are as sick as we are. Thanks to Jon's site we can commiserate, condole, cry, etc,..., all over the place, with impunity. God bless. Later, Frank. marquasmith@lycos.com


Mike W's February 6 reply to Pat's February 6, 2001 - Hi Pat, No, you're not crazy to be going to him but it is time to shop for a new doc. He thinks he's being helpful about allaying your fears, but any human - never mind an MD who talks about someone's possible death so cavalierly - needs to go back to Human Relations 101 in my opinion! Peace, Mike W. mikeyw@sohogurus.net


Jon, February 6, 2001 - Hi everyone, I added a bunch of recipes to Let's Cook (finally). Also, my big sister is getting married Saturday so I probably won't be putting any posts up this wekend at all. Jon.


Andrea M, February 7, 2001 - Hi everyone, Jon, Congrats to your sister on her upcoming wedding! I hope this finds all of you feeling good. I desperately need some advice. I have been having this weird heart beat more and more often lately and have been fainting. Sometimes I pass out when I first get up. I know: rise slowly, but it is happening at other times too, like standing at the sink doing dishes. I awoke to my 3 year old screaming and my 6 year old son grabbing the phone to call 911. I never want them that scared again!
     I have seen my physician's assistant about this and am trying to get an appointment with my cardiologist. He is a CHF specialist but ever since a cath showed my EF at 40% in January he acts like nothing is wrong. I felt better until about Christmas and then my pain increased and so did my shortness of breath, cough, and these fainting spells. I was having the weird heart beat occasionally but now it is several times a day and sometimes lasts for half an hour or more. I am very scared and feeling extremely alone. Please help me. Love and prayers, Andrea. lumina912001@yahoo.com


Jon's February 7 reply to Andrea M's February 7, 2001 - Hi Andrea, See a doctor today, appointment or no appointment. No kidding. The physician's assistant is incompetent if she knows of these symptoms and did not insist you see the doc immediately. I also believe your CHF doc is not up to snuff and you should try to replace him as soon as possible. I also have an EF of 40% now, but my CHF doc understands that EF is only one piece in the CHF puzzle. Jon.


Brandy, February 7, 2001 - Hi, I went to see my CHF nurse today. She looked over my charts and said, "By the way, the EF results they gave you in December were just an estimate. We think instead of 56%, it is more like 45%." I could not believe it! But I mean, 45% is better than the 30% that it was in June of 2000 so I will deal with it, but I wonder why this happened. I was also at the hospital last night having blood work done. They have had me on Lasix the past few days to get rid of some swelling. They say everything looks okay now. Aside from watching sodium and fluid, has anyone else found other ways to prevent or minimize swelling? This was the first time I have swollen since the initial event. Brandy, age 21. Brandylee1114@aol.com


David A's February 7 reply to Tracey C's February 3, 2001 - Hi Tracey, I stopped by Trader Joe's looking for the Black Forest ham that had 160mg of sodium per slice but I couldn't find it. Is this stuff packaged by the slice? What I did find was vacuum packed Black Forest ham portions that contain 620mg of sodium per each 3 ounce serving. Is this ham advertised on the label that it contains 160mg of sodium per slice? If so I'll look again. I really want to cook a pot of white beans and have a nice ham slice (low sodium, of course) with it.
     A question for the group: About a year ago I was taken off the ACE Inhibitor Zestril and put on vasodilators. My problem on Zestril was potassium level increase beyond maximum normal. Because of a newly noted decrease in cardiac output, my doctor wants to put me on ARBs, Cozaar to be specific. Has anybody had problems with increased potassium while on ARBs? The plan is to start Cozaar in 2 weeks with blood tests to monitor my potassium level every week. Oh boy, more phlebotomy fun! Thanks to all! DEZEN@worldnet.att.net


John G, February 7, 2001 - Hi, I am facing a hearing in front of an administrative law judge as the third step of my appeal process for SSD. If anyone can give me advice, it would be greatly appreciated. Claire has been very helpful so far. Thanks again, John. JGeruc@hotmail.com


Charlotte's February 8 reply to Joe L's February 2, 2001 - Hi, I'm battling with my doctor right now. I had to change because of insurance. I have fullness in my abdomen, and I cough and wheeze all night long. I basically have the same symptoms I went through for over 4 years before an ER doc diagnosed me in September of 1999. This new doctor says because my feet and ankles aren't swollen and because my lungs sound clear and an x-ray was clear, I'm not retaining water. he says I have acid reflux cough and psychological problems but my heart is okay so I was politely dismissed. I just needed to vent!
     Any ideas from anyone? My EKG says I'm throwing PACs. My doc says I'm having extra heart beats. I told him I was doing that before I went into the hospital. I also told him I run a fever every night. He told me my pulse showed no fever and my thermometer must be broken. I have already gone to the ER, where they gave me a pain med because my cough was so bad but my lungs are clear and I have no swelling in my feet and ankles so I "am fine." I can't see a new doctor til 3-1 because of insurance. Please pray for me as I will pray for all of you. Thanks for listening, Charlotte. charlotte73045@juno.com


Tom W, February 8, 2001 - Hi, Does anyone know of a site similar to Jon's Place - both informative and supportive - for men with prostate problems? Thanks. tew4515@yahoo.com


Cathy, February 8, 2001 - Hi, I have one question, "What would cause blood pressure to go down, while doing a treadmill stress test?" I thought it should go up. I am doing only okay. I thought I was doing really great but the test says otherwise. I am going backwards instead of full steam ahead. It has been 3 years come March, so that in itself is a blessing from God. My son is learning how hard it is to deal with life's bumps in the road. I pray for him, that is all I can do, Cathy. cpalmer@megalink.net


Joe S, February 8, 2001 - Hi, Well, I found out why those hamburgers and ice cream sandwiches bothered me so much. I now have diabetes. I inherited a glucose testing machine from my father, who passed away from diabetes about 5 months ago and I took a test. It was 268. I called a friend who has diabetes and he suggested I go to a doctor, so I did. I also quit eating hamburgers and ice cream. The test at the doctor's office showed 171. She showed me to take the test before eating and this morning it was 153. I need some advice on how bad this is, what I should do, etc,..,? She also said although my murmer is still bad, she saw no evidence of CHF. Praise the Lord, Joe S. jes@pronet.net


Tony's February 8 reply to Andrea M's February 7, 2001 - Hi, As a followup to my earlier post on things that make my heart start "thumping," I have stopped eating grapes. I have pretty much determined that grapes cause my heart to start thumping, or start beating more erratically. Perhaps it is due to the pesticides in the grapes, even after thorough washing, I don't know. t0nyt@yahoo.com


Tony's February 8 reply to Andrea M's February 7, 2001 - Hi Andrea, Regarding your unusual heart beats, my heart is always irregular to some degree but at times it will beat more erratically and start to jump forcefully and somewhat painfully. It has taken me a long time but I have finally isolated some things that cause most of the uncomfortable heart jumps or skips or thumps for me. I don't know if what I have learned about my own electrical system affects others the same way but I would bet that a lot of my problems are similar to others.
     If my heart only gets mildly upset and starts mild thumping, I mainly notice it when I try to sleep. I can usually go to sleep if the thumping isn't too severe but I pay for it the next day. The stronger the thumping, the worse my symptoms get (weakness, sweating, faintness, fatigue, chest pain), the longer it takes for me to rebound from the weak, tired, sickly feeling afterward.
     I am convinced that my heart irregularities are affected by combinations of events, whether due to allergic reactions, chemical sensitivities, seasonal changes in the atmosphere, pollution in the air, taking certain medicines too close together, or by a combination of events. For instance, when I was on increased Accupril (an ACE inhibitor that alters potassium levels) when I would eat bananas or drink too much orange juice I would get increased heart irregularities, probably due to potassium overload in my system. My doctor told me to cut down on the orange juice and bananas. I chose to cut down on the Accupril.
     If I take dairy products, especially cheese, too close to my verapamil or my Lanoxin doses, I have a nasty, harsh reaction from my heart. I am pretty sure this is because of the calcium in the dairy product since both Verapamil and Lanoxin affect the body's handling of calcium. If I come into direct contact with dust or if it is a high allergy day outside, my thumping gets worse. I think some of the worst thumping happens when I take my Lanoxin within 2 hours of my verapamil. Also, certain dyes and chemicals in clothing and bedding materials cause my heart to get erratic. For instance, I can wear black-colored jeans but if I wear certain blue-colored jeans or shirts, my heart will go into stronger thumps.
     So there are a lot of conditions and events that make my heart go nuts but after much trial and error I have greatly reduced the thumping episodes. Sometimes it takes a combination of two or more factors to trigger a nasty heart reaction. I don't think that many companies test the chemicals they put into materials and clothes and foods to see if there are bad health reactions to the dyes. I wonder how many children are sick with a whole host of illnesses because they are reacting to untested dyes or fire retardants in clothing?
     I think that there are definite reasons why our hearts become more erratic. If we can find out what is irritating our heart's electrical system, we can do a lot to improve our own health. Otherwise we have to go through the numerous guesses, and trial and errors by some doctors who spend less time looking at our charts and researching our illnesses then they do planning for lunch. Even the best doctors can't put in the time to thoroughly research everyone's illness. I am not saying to ignore the doctors at all but to do the investigating the doctors can't do. Anyway, I'm hoping that something in my experiences might be of help to you. In any case, I wish you answers and good health. Have a great day! Tony. t0nyt@yahoo.com
 
Jon's note: To be blunt, choosing to cut down on the most critical med for CHF rather than stop eating so many bananas does not impress me


Tracey C's February 8 reply to David A's February 7, 2001 - Hi David, I double checked my package (scared me there for a minute) and it does say American Heart Association approved. It's called "Healthy Ham" by Black Forest. One full slice (very thin) has 180mg sodium. It's really flavorful though, and one slice seems to do the job. I'm in Orange County, California, and hadn't seen this at my store before. I'm sure it will be across the country soon. They have the dark-edged sweet kind and they have your run of the mill ham slices with the same amount of sodium. I hope you find it.
     Thanks to all for the responses about atelatic lung. I'm having a rough week with the fault being mine, I guess. I paid to have one of those full body CT scans done just to make sure I don't have anything else to worry about. My mistake. I should listen to Ben and just try to live my life. So beyond the lung findings, they found uterine fibroids, which need to be taken care of because of their size, and a solid mass on my ovary that is not a cyst. I had an ultrasound at my gynecologist's office and she confirmed the finding. I now have to wait a full month to see if it goes away. If not, she thinks it may be early ovarian cancer. So it's just one thing after another lately.
     I visited a pulmonary specialist yesterday whom I love and wish were a cardiologist. He said the atelatic area was very small and probably caused by my "generous" heart pressing on the area, and told me not to worry. So there was some good news. Sorry to ramble on, I just needed to vent and have vented enough on my poor husband the last week or so. Thanks, Tracey. nuttytandt@aol.com


Will, February 8, 2001 - Hi, During our heart transplant support group meeting today, one of our people brought to our attention an organization that helps transplant receipients and those facing transplantation with expenses not covered by your own insurance. Anyone facing the eventual transplant process should check into this. The site is www.transplantfund.org. Check it out, Will. heart266@tco.net
 
Jon's note: There are also links to other such organizations on my transplant links page here


David A's February 8 reply to Tracey C's February 8, 2001 - Hi Tracey, Thanks for the additional info on the ham. I didn't mean to scare you there with my question. I live in Northern California - San Francisco Bay area to be exact - so our TJ's shoud have this type of ham too. If not, I will ask them to put it on the shelf.
     As to the comments in earlier posts, I too am a "born with heart and other problems baby" and my pulmonary doctor has told me that it has been found that individuals born with certain health situations seem to do better than individuals who come down with the problem in later life. However, it doesn't matter how one gets this ailment, it is not any fun and takes a lot of life style adjustment and patience. Best to all! DEZEN@worldnet.att.net


Mike J, February 8, 2001 - Hi, I went to the doctor yesterday to have him listen to my chest and see if my congestion had cleared up from the sinus and allergy problems I had. I had a chest x-ray last week and it showed some vascular fluid but no edema. Yesterday my chest was clear, my BP was 130/65 and my cholesterol was 186. All my blood work was good. The reason I post is to let everyone know I am still taking Coreg once a day at bed time and now have started to feel very well. I think my body must be adjusting. I still work out 4 times a week in the gym and I think it has helped me. I just wanted to let you know about the Coreg and hope this note finds you doing well. Jon, I hope the wedding goes well this weekend and again, God bless you for this site. Thanks again, Mike Joye. joye13@gateway.net


Jon, February 8, 2001 - Hi everyone, A couple of things. First, I may miss Saturday (wedding), Sunday (my usual day off) and Monday (wife is getting drugged mindless for a test) so this forum may be still those 3 days.
     Also, Dr. Marc Silver - who wrote "Success With Heart Failure" - is going to do a once-a-week answer to a reader-submitted question here. The first question will go to Doctor Silver early next week. I don't have the new page set up yet but when I do, it will have a form to submit questions. Here's a few notes on this weekly feature:

  1. All questions will be submitted via the form only.
  2. All questions will have to be okayed by me before going to Doctor Silver.
  3. These questions will be general questions - not patient-specific questions. This means that a questions like, "I am a 63 year old man with 3 bypasses and a-fib. My doc prescribed meds A and B but I think med C would be better" sort of thing isn't what I am aiming for. Questions of interest to everyone are the thing, like: "I have heart failure. Should I exercise on days when my symptoms flare up?" or "My numbers are better but I feel worse - why?" and so on are good ones; General stuff, but of definite interest to CHFers. Don't worry, I'll go back and forth on this until a question you submit is in a form we can use. I'm planning to be easier than usual to work with on this because I see this as a very important feature of the web site. Doctor Silver has a gift for communication, is a whiz-bang CHF specialist and sees us as real people. He's an ideal choice for this and I'm very happy he has agreed to take on this added work on top of his inhumanly busy schedule.
  4. Because of his schedule, I am going to leave a one week period between a question being sent to Doctor Silver and posting his answer. So questions will routinely be submitted through me to him each Monday afternoon. The answer to that question will be posted the following Monday or Tuesday. This may seem like a stretch but consider that after a year, there will be 50 general questions that concern us CHFers with answers from an undisputed expert available as an archive.
  5. Caregivers and loved ones are allowed to submit questions

Anyhow, I'll get a page going tomorrow, I hope. In the meantime, please submit any questions to me by e-mail. After I get the page done, we'll switch to just using the form. I'll let you know when that page is ready. So send me your questions and we can get this thing started. If you want to ask questions about the kind of questions to be used or whatever, post those here so everyone can benefit from the discussion. I am open to ideas and suggestions as well. Jon.


Jon, February 8, 2001 - To keep it from being lost in my last post, please note that I have corrected the link I put in Will's post for the heart transplant fund assistance program. See Will's post now for the correct Url. Jon.


David A's February 9 reply to Brandy's February 5, 2001 - Hi Brandy, Great news about your EF. If your nurse or doctor doesn't respond within 24 hours, call again. Always indicate on your follow-up calls that this is your second or third time trying to reach your nurse. Fluid retention and weight gain does not necessarily mean your EF is down but excessive fluid will cause your heart to work harder and start the endless cycle towards congestion if not resolved. Your daily weight is the best indication of excessive fluid retention. Weight gain during your monthly cycle is not unusual but can be misleading for someone who has CHF. Ask your nurse if you gain a few pounds can you take a half dose of Lasix (diuretic) to bring your weight down. It is imperative that you weigh yourself daily. My husband weighs himself daily out of habit and fear these days. My husband's doctor says this is okay to bring his weight back down, which happens on occasion after a salty weekend. cavalier_1@msn.com


David A, February 9, 2001 - Hi, Will Coumadin (warfarin) altered INR blood levels be affected by taking one or two tablespoons of flax seed powder per day? Thank you. DEZEN@worldnet.att.net


Donna, February 9, 2001 - Hi, I want to know what I can expect with my congestive heart failure. I have had the disease 4 years and I really do not know if I am worse off now then I was at the beginning of all this. I have days I am so tired I can barely move and many nights of fluid in my lungs so it is hard for me to get my breath. When I go to my doctors, they just ask if I have any pains in my chest. Well no, there is no real pain, as I know pain to be. There is discomfort at times but no real pain. So my question is, "What is next for me?" djandrews2000@yahoo.com


Ginger's February 9 reply to Tony's February 8, 2001 - Hi Tony, I don't understand why you would drop your dose of ACE inhibitor. My doc dropped mine and I lost heart function from a 55% EF to 40%. That's mighty risky, espicially if you did it and not your doc. I think you need to rethink what you did. Your doc must have had your Accupril at a certain dose for a reason. I just found your post a little scary since playing with our meds on our own can be dangerous. Please rethink what you're doing. Hugs, Ginger. angelgin@bellsouth.net


Janet, February 9, 2001 - Hi, I have noticed that many of you with CHF also have diabetes. I started wondering if some of the meds we're on, like Coreg, could cause diabetes. I went back to Jon's pages on Coreg here, here, here, and here. There it said that it could raise blood sugar levels. I just got a test back with a raised blood sugar level, however it wasn't a fasting test so I am scheduled for another one. Have many of you developed your diabetes after your heart problems and if Coreg is the culprit, is the choice to stop Coreg? Or deal with diabetes? Coreg is such a new drug, however we may be the guinea pigs albeit live guinea pigs, but I am just interested in others' experiences.Thanks, Janet. bjatvsmith@socket.net


Joe L's February 9 reply to Charlotte H's February 8, 2001 - Hi Charlotte, Be persistent. It definitely sounds like you are retaining fluid. Most doctors do not realize that a dry, wheezing type cough can indicate fluid retention. The air sacs simply swell and get irritated; they just don't release fluid into the interstitial spaces of the lungs, which is exactly what happens in my case. Also, my abdomen swells and I feel like I am super full all the time. When I was recently treated with IV Bumex, my cough and wheezing were completely gone in about 4 hours. Go to your doc and demand they treat you with a strong dose of a loop diuretic and hopefully your cough will get much better. Before I was correctly diagnosed, they were treating me with high doses of codeine to supress my cough. It helped but put me into a mental stupor. Also, ask to be checked for pulmonary hypertension. Those are classic PH symptoms also. Good luck and God bless, Joe L. JTLucido@aol.com


Stephanie M, February 9, 2001 - Hi, Thanks so much for this site and for your responses. You are really a blessing and an answer to my prayers. Eight years ago I had my mitral valve replaced. Immediately after I had atrial fib so they did ablation and gave me a pacemaker. I did fine for 8 years. Last Spring I was having TIAs so I got a new pacemaker. I felt great for a few weeks but have gone downhill since. In December I was diagnosed with idiopathic cardiomyopathy with an EF of 15%.
     After all that, I have a few questions. I am wondering how you describe your symptoms? I really have a hard time. I end up saying things like my heart felt like it was doing flip-flops or it felt wobbly or it feels like I have fire in my chest. Most of the time I have no words to describe what I feel but I know something is wrong. Any help would be greatly appreciated. I think that I have been in denial and the reality of all of this is setting in. How do you deal with the fact that this is real and it is happening to you? God bless all of you. Thanks, Stephanie. moodystephanie@hotmail.com


Jon, February 9, 2001 - Hi everyone, If anyone is interested, www.mypillbox.org has a new feature aimed at helping people like us organize their meds. It's called (of course) The Pillbox. I talked to the guy in charge of it about their privacy policy and setup. It looks pretty benign to me. Those who know me know that I am a bit paranoid about people stripping information from site visitors so hopefully I'm right and not sticking my foot in my mouth on this one. :-)
     This is painfully off-topic but I also want to once again point out 2 free programs that can greatly improve the safety and privacy of your time on the web. Check out ZoneAlarm's firewall (the free version) and InoculateIt anti-virus software. I use ZoneAlarm on all our home pooters and my wife's system runs InoculateIt. I've been very happy with both, and they are free. Jon.


Lee R's February 9 reply to Donna's February 9, 2001 - Dear Donna, I'm an old timer here at the Forum, so I want to say hi to everyone and that I'm doing well. Donna, your post jumped out at me and if all your doctors care about is whether or not you are feeling chest pain, perhaps it is time to see a new doctor, preferably one with CHF experience and get another opinion. Are you on enough drugs, like ACE inhibitors and beta-blockers and a good diuretic. Please learn all you can by reading up here at Jon's PlaceM. I hope that you can feel a bit better than you do now. Bestest, Lee. LeeJRoush@msn.com


Bill D's February 9 reply to Donna's February 9, 2001 - Hi Donna, Why don't you tell them what you told us? You know: "I have days I am so tired I can barely move and many nights of fluid in my lungs so it is hard for me to get my breath." Are you going to a CHF Specialist? You should be! It doesn't sound as if your doctor is very bright. You need the smartest doc in your state if you like to go on living, Bill D. billdog@gate.net


Phyllis A, February 9, 2001 - Hello Jon and Friends, I have again changed my e-mail address. I'm not on the pooter much anymore due to my health. I now have fibromyalgia and last Tuesday I was rushed to hospital by my husband with shortness of breath, nausea, and I almost blacked out, seeing black spots. I stayed in for 3 days with diagnosis of bradycardia (slow heart beat). My blood pressure was 80 over 40 and my heart rate was only 44. I was very scared, as was my husband.
     They said I was over-medicated, which caused this. My meds were reduced, my Lasix from 160mg in the morning and 80mg in th evening to just 160mg a day, and my verapamil from 360mg twice a day to 240mg twice a day. I'm having some palpitations and will see my doc next week. My doc did mention a pacemaker again so we will see. Please pray for me as I do for us all, even when you don't hear from me. God bless. pa132@juno.com


Sheryl's February 9 reply to Janet's February 9, 2001 - Hi Janet, In August of 1999 I was in the hospital getting a heart transplant work-up. At that time they did an A1C test for diabetes. The results were normal. Three weeks ago I had another A1C which showed my average blood sugar levels to have been 350 for the last 3 months. I am now on an oral med for diabetes. I was put on Coreg right after that hospital stay. I could not take Coreg at the 12.5mg twice a day level because it made me feel so sick. Perhaps it was raising my blood sugar levels. I am on 6.25mg BID now and tolerate it okay. You think a low salt diet is bad, try low carb, low cholesterol and no Key Lime Pie! By the way, I am on the thin side so don't be fooled that you are safe if you are thin. They are starting more studies on patients with both CHF and diabetes. Like you say - Guinea pigs. sheryl_sh@hotmail.com


Tony's February 9 reply to Ginger's February 9, 2001 - Hi, First, thanks for your note of concern but I didn't drop my Accupril, I just reduced it. I've had CHF for about 15 years. Over that time it continued to get worse and I was facing the prospects of a heart transplant, and still am. I've been on just about every heart medicine known to man.
     About 2½ years ago I decided to start monitoring my symptoms. I started keeping a daily log, including up to 10 blood pressure readings per day. I found out that the meds I took were not controlling my blood pressure. My doctor started working with me to adjust my meds until we found a combination that worked. Nothing worked until we increased the small dose of Verapamil I was taking. I got instant improvement in both blood pressure readings and symptoms. Calcium channel blockers like Verapamil are not recommended for CHF. Ace inhibitors such as Accupril are recommended, as Jon pointed out. I think that Verapamil works for me because it helps my atrial tachycardia, for which it is indicated. Lanoxin, on the other hand, helps my chronic a-fib and CHF; and of course Accupril is indicated for CHF, along with my other meds.
     As fellow CHFers know, our diets are very limited. I know that it is better to diet than to get worse but I sure miss pizza and pretzels and potato chips and ice cream and yes, even McDonald's cheeseburgers and fries, but I don't eat them. So I've cut my Accupril down so I can drink orange juice, one glass a day, in the morning.
     To me, unless people with CHF check their blood pressure several times per day over a period of time, they don't really know how well their blood pressure is doing. To me, if people with CHF and heart rhythm irregularities can find what is causing their hearts to get irregular, they can avoid using additional medicines or surgery in an attempt to treat the condition. To me, hearts get irregular because something triggers a reaction, probably hormonal, in their systems. What are the offending "somethings" that trigger the reaction? It is complex and difficult to figure out, but it can be done in a lot of cases, in my opinion. I am not a doctor nor an expert. I am just suggesting that people with CHF and other related illnesses become more proactive in the investigation of their symptoms.
     I would like to know if anyone else has found out what causes their heart irregularities to worsen. Does anyone have anything that works for them? Does anyone have a particular food that they can trace their increased irregularities to? How about cigarette smoke? Anyone's hearts go nuts like mine does, when cigarette smoke is anywhere near? Thanks again Ginger, for your concern and your note. Tony. T0nyt@yahoo.com
 
Jon's note: Man, never mention pizza! It's my main craving since going low sodium


Debbie Harmon's February 10 reply to Sheryl's February 9, 2001 - Hi, Since taking Coreg starting in the spring of 1999, I have developed Type 2 diabetes also. In the spring of 2000 my level was 130 and by the fall of 2000 it tested 280. I went to the doctor for flu symptoms and this was found. Is there available information about this? I have also read that diuretics can cause this.
     I am taking 25mg Coreg twice a day, 0.125mg Lanoxin once a day, 1.25mg Bumex twice a day, 8meq Klor-Con once a day, 2.5mg Vasotec once a day and am now taking Glugovance twice a day. Is it true that oatmeal can affect your Lanoxin? I read this in a health magazine. I had trouble with Coreg when I first went on it too. I was horribly tired like a black cloud and as soon as I was used to it the doc would increase it till I am now taking the 25mg twice a day. When I first became ill my EF was 13 or 15. When retested in the fall of 1999 it was 55%. I am doing well and losing weight slowly, with 75 pounds still to go. Did anyone have the weight loss side effect? The only one I would not have minded and no luck! Peteypoly@Yahoo.com


Ginger's February 10 reply to Tony's February 9, 2001 - Hi Tony, I think all of us are concerned about each other here. I am confused (which is nothing new). What would drinking one glass of orange juice have to do with your Accupril dose? I thought it was just grapefruit juice we were supposed to be careful about. I missed the boat somewhere in this, huh? <g> Hugs, Ginger. angelgin@bellsouth.net


Joe S' February 10 reply to Tony's February 9, 2001 - Hi, You asked what else bothers people with heart problems. Well I've had a bad heart for 57 years now and was successful at eliminating CHF about 8 months ago. I eliminated CHF but gained diabetes, go figure. About 25 years ago I went on a 3 day fast and gradually started eating again. When I'm really bad, it seems like anything spicy bothers me. When I feel better, it's onions, walnuts, avacodoes, chocolate, in other words most of my bloating and feeling bad is because of food allergies and not CHF directly. My mother died with CHF and diabetes, and I watched as certain foods made her worse. I could sit and watch her ankles swell to double their normal size depending on what she ate. When I completely changed my diet 2½ years ago because of CHF, I started feeling better and better every day. Now with diabetes I have to change it again; I have and again I feel better. I am 62 and now the rest of me is affected by this poorly pumping heart. I just lost some teeth and expect more to happen soon. By the way exercise, CoQ10 and other things Jon suggested have helped the most. I feel pretty good most of the time. Good luck, Joe S. jes@pronet.net


Ben B, February 12, 2001 - Hi, It seems like so many of the people who were almost daily posters when I first started reading here never post now. Although I know a few may have passed away, experience has shown me that 90% plus are still alive, doing better, and probably reading these very words. I wish people would post every so often. Has anybody heard from Robin, a young lady who had a heart transplant about 2 years ago and was quite inspirational? bdbrinkman@juno.com
 
Jon's note: Just a note: Bill Drummond was the first poster ever at Jon's Place and he helps a lot on the Loved Ones' forum to this day!


Bob N, February 12, 2001 - Hello everyone, I noticed Jon made a comment that he misses pizza. My wife makes me a very, very low sodium pizza every Sunday night. if you are curious how to make it just let me know. Good luck to all. bignick42@aol.com


Jon's February 12 reply to Bob N's February 12, 2001 - Hi Bob, If you can tell me how to make a low sodium pizza crust without a bread machine or lots of kneading, I'm ready to munch! Jon.


Claire E's February 12 reply to Tony's February 9, 2001 - Hi Tony, I absolutely cannot tolerate being around cigarette smoke at all! I always though it was just me and that I was being a hypochondriac about it. Thanks for the the validation. I get angina at every family holiday even though the smokers leave the room. They all go smoke in a bedroom. I always come home and feel cardiac cruddy for a few hours or more depending on how long I am exposed to the second hand smoke; I need to lie down and take my nitro. Wow! I always thought it was just me. Peace and love, Claire E. weezey62@aol.com


Dan, February 12, 2001 - Hi, Has anyone looked into the large doses of L-arginine as a benefit for the heart? Some sites advocate it, like www.uspharmacist.com/NewLook/Ce/larginine/lesson.cfm. It also refers to a new "heart Bar" supplemental food here that also claims to help heart sufferers. Any feedback would help. dmchilcutt@utsa.edu


Jon's February 12 reply to Dan's February 12, 2001 - Hi Dan, I saw an ad in my local newspaper about the "heart bar." The ad was a half page but did not list ingredients. Since then I have seen an ingredient list. In my opinion, this product would be of little or no benefit to a heart failure patient. It wouldn't hurt anyone as far as I can tell, though, unless they had an allergy to an ingredient. I am personally looking forward to Myovive's reappearance and am attempting to get an exact date for ordering availability. Jon.


Tony's February 12 reply to Joe S' February 10, 2001 - Hi, Congratulations on beating your CHF and surviving 57 years of heart disease. Yours has to be a unique story of survival. Spices don't seem to effect my own heart problems but my family must evacuate our home later that day. <g> If you went to heart doctors and asked if spices affect your heart, you might get different stories.
     There is a link between allergies and the heart. Allergies cause the adrenalin gland to pump certain chemicals into the body such as epinephrine, which has a direct effect on the heart. Since there are many different allergies, what may make one person's heart rhythm react badly to the dye in a blanket, another person might not react to the same dye, but might react to chocolate. On the other hand, if you discuss with your friends or associates that avocados affect your heart or bloat you, they would possibly scoff at you and tell you that this is due to psychological reasons. For me, both chocolate and certain nuts affect my heart and my allergies.
     It sounds like you have been very proactive with your health and heart problems, and have really come out on top. Excellent! I have also found that a very strict healthy diet, both low sodium and low allergy, has really helped. Did you ever have someone come back to you and criticize you for thinking that onions, walnuts, avacodoes, or chocolate make you feel worse? Regards, Tony. t0nyt@yahoo.com


Tony's February 12 reply to Ginger's February 10, 2001 - Hi, Grapefruit juice is probably one of the more well known products that can interfere with the actions of certain drugs, including calcium channel blockers, subsequently affecting heart rhythm. To me, almost anything can interact with a drug or someone's nervous system, depending on the individual and their environment. Everyone is different.
     Ace Inhibitors increase blood potassium levels. Potassium is used by the body for regulating the heart. If I eat bananas and drink orange juice, my heart rhythm gets erratic so I don't eat bananas and I limit myself to one glass of orange juice in the morning and an occasional juice in the afternoon, and only take 10mg of accupril. The entire science concerning heart rhythm abnormalities is extremely complex. For instance, I think the proper interpretation of a 12 lead EKG is very difficult and takes a lot of training and time but I've met very few doctors that take much time interpreting one.
     Another problem is that our heart rhythm system is a moving target. What your heart rhythm and blood pressure does one time, might be significantly different from what it does some other time. I think that a lot of boats are missed. It's difficult for a heart doctor to solve a heart rhythm problem, when it isn't messing up while he is examining you. Hugs back to you, Tony. T0nyt@yahoo.com


Jon's February 12 reply to Tony's February 12, 2001 - Hi Tony, I don't know if this is what Ginger meant or not, but I wonder if one glass of orange juice is reason enough to alter your ACE inhibitor dose? You talked about reducing the dose so you could eat more bananas and drink more juice originally (your 2-8 post) so it is kind of confusing; Especially since your doctor said to reduce the bananas and juice, but you reduced the ACE inhibitor instead. If your system is so sensitive to potassium that one glass of orange juice significantly affects your heart, perhaps you should substitute something for the juice rather than alter your drug dose. That's meant as a concern, not a criticism. Jon.


Jon, February 13, 2001 - Hi everyone, Well, obviously I'm not sleeping tonight. ;-) Thank you all for your prayers and e-mails. Linda's test results look really good so far although we have to wait for the main result. One bit of very good news. Our daughter Linz was officially announced yesterday as a National Merit Finalist! This gives her a huge edge on the college scholarship hunt since it places her in the upper 1/2% to 1% of all American high school seniors for the year. Three of her next four weekends will be spent interviewing at 3 different schools so it's gonna be lonely around here. Oh yeah, and my sister's wedding was great. I also found out my sister-in-law (I have 2 kid brothers too) is expecting, so it has been a very nice few days around here. However, I am falling down tired so if I sign off for a day or so, I'm just resting up! Jon.


Rick M's February 13 reply to Ben B's February 12, 2001 - Hi Ben, It may just be a case of, "After you, Alphonse," an old expression meaning, "I don't want to answer your question because someone else may have a better answer than mine" or it might just be that the subject is so much of a recurring one that all the old-timers want to do is say, "Read the Manual!" instead of saying "What you call a low-sodium diet is no low sodium diet." <g> Some old-timers are kinder than that and like Bill D, answer the newbies in full.
     I do think that we should all check in on a regular basis, just to confound all the doctors who gave us short life expectancies, and also to remind ourselves that there are a lot of old Coreg takers out here and that new Coreg takers shouldn't give up just because the cure makes you sick. <g> rearadml@iu.net


Autumn, February 13, 2001 - Hi Everybody, On the issue of diets, I thought I'd ask you all for some suggestions on how to handle my situation. Fifteen months ago I was diagnosed with CHF. I did very well following my diet and exercise plan. Thirteen months ago my husband was diagnosed with diabetes. He lost weight and keeps his sugar under control by cutting portion size but still lives for chips, sausages, fatty and fried foods. One year ago he seriously injured his leg and has been off work since. His fellow employees brought meals to the house for 5 weeks, which was really a blessing considering the stress of the situation and the extra work load I had trying to take care of him when I myself was fairly ill. Much of the food was not on my diet plan but I was usually successful in leaving it alone.
     The biggest problem is that my husband continually sabotages my diet. He calls my food "cardboard." November eleventh I had surgery for a hernia repair and November 15th he unexpectedly had to have another major surgery on his leg so, through mid January, meals have again been brought to the house. Don't get me wrong, I deeply appreciate their kindness but this time I have given in to all those temptations and to my husband's sabotage.
     I know it is up to me what I put in my mouth but being on a restricted food plan is difficult even with family cooperation. I realize I am eating because I feel worn down by the constant temptation, by the stress over the surgeries, by the pain in my back and legs from a herniated disk, and because I am discouraged over being unable to take necessary meds for my heart because of allergies, and now being diagnosed with hypercalcemia which affects my renal insufficiency and also my heart. I do know that if I follow the program I can benefit my health greatly even with my limitations. I have continued to maintain my exercise. I told my husband I am considering not eating my meals at the same time he eats his, and won't be around when he is eating all the junk. He is against that but I don't know how else to handle this as I have been such a weakling the past 3 months. I don't see his behavior changing as long as he can get me to join him and it may not change but I need to deal with it in some way that takes care of my health. Do any of you have any suggestions? I would appreciate any input. Thanks, Autumn. AmberDawn-Blzn@webtv.net


Janet T, February 13, 2001 - Hello Everyone, It's been a long time since I posted but I'm still here reading. I have been so fortunate to be handling my CHF with the help of this site and all you wonderful folks since I was diagnosed in 1997. I have adriamycin induced cardiomypathy (adriamycin is a chemo drug used to treat my cancer in 1996) with an EF of about 30% with meds.
     I was on vacation with my husband and some family members last week and Bam! I got the hives something fierce and my lips swelled to something beyond huge. I paged my doc and he informed me I was having a reaction to Zestril, my ACE inhibitor, and I had to go off it. This happened within 8 hours of arriving at our destination. I had 5 days before I was going home. I also had to start prednisone. I never knew this could happen to this kind of extreme and I fancy myself as being quite knowlegable about this heart stuff.
     Now they have started me on an ARB called Avapro and tell me I can no longer take ACE inhibitors. They say my EF dropped back down to close to 10% in a matter of a week. Scared? Out of my mind. It seems like a long time since I was diagnosed and I remember the cardiologist telling me that they "could get my EF up to around 30% and although that didn't sound good, it was 3 times as good as 10%." Boy, do I ever believe that statement now. They say it's going to be a long road back up to 30% with an ARB.
     I need cold, hard, straight info from anyone who has been through this themselves, please. I was pretty cocky on Zestril among other drugs, watching my fluids, eating right, and taking my meds on time. With the help of this site and a great doc, I've done very well. Now this reaction to the ACE inhibitor has thrown me for a loop not only physically, but emotionally as well. My doc is wanting to talk to me daily now and it's kind of scaring me a little. He's making it seem like it could be weeks or months before (or if) my EF is going to show real improvement. I'd really appreciate any input if you've gone through this. Thanks, Janet T. ladycow123@aol.com


Jeanette, February 13, 2001 - Hi all, I am just posting to let all of you know that even though I don't post very often, I visit daily and read all the posts. Jon, I hope you are feeling better and that the rest of you are doing well. I am moving into my new apartment this weekend and have lots of help. I can't wait to fix up the new place and settle in. I am doing fine. I has a bout with an infection from my root canal but am doing much better now. I'm going in for the second part of the RC next week. Keep me in your prayers that it will be over soon. I didn't go through with the liver biopsy. I am getting a second opinion before they stick me with that long needle in my side - I don't think so! <g> Well, I am always praying for you all and hope that all is well in DCM land. Take care and God bless, Jeanette. jeanette841@yahoo.com


Jessie, February 13, 2001 - Hi, I have postpartum cardiomyopathy. I am wondering how much exercise is ok? Juliahenry@aol.com


Taavi K's February 13 reply to Dan's February 12, 2001 - Hi Dan, While waiting for my heart transplant in 1997, I took part in a study on the affect of L-arginine on exercise tolerance in patients with heart failure at the University of Minnesota. This involved timed walking tests and various blood tests while taking different dosages of L-arginine or a placebo. You only knew that you would be given both, but not during what period.
     I have not seen the published results of that study but I do believe that it noticably helped my endurance. At the conclusion of the study, I continued to take it with the blessing of my cardiologist - who was one of the researchers - until transplant.
     I had not heard of the Heart Bar. It is not clear to me just what, if any, advantage there would be eating these bars as opposed to just taking L-arginine capsules. kubit002@tc.umn.edu


Tony's February 13 reply to Claire E's February 12, 2001 - Hi Claire, Thanks for your response. You are the first one who seems to have a similar reaction to cigarette smoke. My heart not only has a nasty rhythm reaction to the smoke but also the smoke in someone's hair or clothing. It's frustrating when you can't find anyone else who has such a significant negative reaction. Thanks for speaking up!
     I also like your use of the phrase "cardiac cruddy." I've never known how to describe that awful feeling after and during a bad rhythm session. Do you have any other encounter or event that causes a similar bad heart reaction? If so, what do you do to avoid it happening again? I guess in some cases a heart regulator device needs to be implanted if the heart rhythm irregularities can't be sufficiently controlled. t0nyt@yahoo.com


Tony's February 13 reply to Jon's February 12, 2001 - Hi Jon, More than 10mg of Accupril with my current drug regimen seems to bring more negative effects than positive effects, including the sensitivity to orange juice or bananas. If more than 10mg of Accupril showed beneficial results for me, I'd be begging my doctor for an increased prescription. I appreciate the concern, thanks, but my decision to increase my orange juice dose rather than my Accupril dose comes after much testing. Looking back, my choice of orange juice over the benefits of an ACE inhibitor does seem a little flippant. I can see why there was a negative reaction to my previous post. t0nyt@yahoo.com


Jon, February 14, 2001 - Hi everyone, For more on Coreg, try the new site at www.coreg.com/?a=86. Click on "Patients." A thanks goes to Dr. Marc Silver for pointing this out to me.
     PS. I did get some sleep finally ;-) Jon.


Andrea M, February 14, 2001 - Hi everybody, Jon, I'm so glad your sister's wedding went well! Congrats to your daughter and she has a gorgeous voice!
     I am still having an awful time with palpitations. My doctor's office is mostly uncooperative. They are the only cardiogists in town. A couple of internists here are FACC certified but will not accept new cardiac patients. My family doc keeps referring me to the cardiologist and vice versa. If anyone has any suggestions, please let me know. I am going to the ER here, which only results in my cardiologist being called in. The other docs in his practice (28 in all) won't do anything either. I really need some help with this. I have daily runs of palpitations and PVCs, and I have fainted twice. I feel awful. Thanks for all of you! lumina912001@yahoo.com


Jon's February 14 reply to Andrea M's February 14, 2001 - Hi Andrea, Are you being seen by a cardiologist who is an electrophysiologist? That's a heart doc who specializes in heart rhythm problems. This would seem mandatory in your case. A regular cardiologist or heart failure specialist would not be adequate to treat all your heart problems. Jon.


Ann C, February 14, 2001 - Hi all, This is just a note to let you know that I straightened everything out with my local doctor, and my specialist is now in charge of everything. He is so much in charge that he has decided to put me in the hospital next week for a right heart catheterization (Swanz-Ganz) and have a look at my right tricuspid valve, which is leaking way too much, putting me into right heart failure. I am also going to be put on the heart transplant list. I have sooo many emotions in my mind, it is almost like the grieving process; you know - guilt, anger, denial, blah, blah.
     I will keep you all posted and let you know how I fare. I am 33 and have 3 children and a loving husband, but I do not think they know the seriousness like I do. Any advice from the heart transplant recipients out there? I have read everything on this site, and just wanted to know if there is anything else I need to know. Please say a prayer for us. Thanks, Ann. Shomeekatz@aol.com


Jon's February 14 reply to Ann C's February 14, 2001 - Hi Ann, I just want to apologize for the lack of real-life heart transplant stories on my pages. Taavi's was meant to be the first of many. However, I have run into a brick wall everywhere I turn for such stories, even at my local transplant center. For some reason I guess I will never know unless I have a heart transplant myself, recipients do not like to share their own stories online. Jon.


Bill D's February 14 reply to Janet T's February 13, 2001 - Hi Janet, I'm suspicious when your doctor diagnose your symptoms over the phone. I'm even more suspicious when he says your hives were caused by your Zestril and you'd been taking that for 2-3 years with no problem. I'd get a second opinion. It sounds like you completely stopped your ACE inhibitor. That would have caused your EF to go down precipitously. Bill D. billdog@gate.net


Bill D's February 14 reply to Autumn's February 13, 2001 - Hi Autumn, I've got a solution for your problem but you may not like it. I think you have to find someone in your neighborhood who has CHF. Then go over and cook for him, and his wife will cook for your husband. <g> Of course, you may find a wife who has CHF and you could trade off days when you cook for each other. By the end of a week, maybe your husband will appreciate your "cardboard cooking." Bill D. billdog@gate.net


Brandy's February 14 reply to Jessie's February 13, 2001 - Hi Jessie, I have PPCM also. I started out in cardiac rehab and now I exercise on my own at home. I started out slow and I only exercise 4 times per week for about an hour each time. I do the treadmill at 3.1 miles per hour for 30 minutes and the bike at 15 mph for 20 minutes. There is also a machine that I do at my fitness center called the sprint machine. I shouldn't, but I do it for 6 minutes.
     Always remember to stretch. If you don't stretch, it harms the heart by making it suddenly overwork without preparation. I have an EF of 45%. When it was at 30% they told me to not exercise with my heart rate about 122-130 so I know my target heart range. You should talk to your doctor about rehab, it works wonders. I hope this helps, Brandy Lee. brandylee1114@aol.com


Davida S' February 14 reply to Jessie's February 13, 2001 - Hi Jesse, Check with your health care provider regarding exercise. He may recommend some limits based on your EF or anticipated recovery. A quick call to your physician's nurse should get you an answer. My husband, who was really bad off, started slow walks with lots of stops for about 15 minutes a day in the beginning. He now walks non-stop at least a half mile to one mile a day depending on how he feels. cavalier_1@msn.com


Davida S' February 14 reply to Ben B's February 12, 2001 - Hi, I agree 100% with Ben. Please check in every now and then and let us know how you are doing. I often wonder how certain people are doing. cavalier_1@msn.com


Davida S' February 14 reply to Andrea M's February 7, 2001 - Hi Andrea, I can only hope you have seen a physician by now. What you describe is very dangerous; it sounds like a heart arrhythmia (irregular heart beat). Please read up on this symptom as soon as possible. It can cause sudden death and you are blessed to get the warnings such as passing out and waking up. It is the most dangerous symptom of CHF. Please heed the warning and run to a physician's office. Please write and update us, and let us now the outcome. It's enough to make the avid reader show concern for you. Take care. cavalier_1@msn.com


Linda O, February 14, 2001 - Hi, I heard Dr. Dean Edell on the radio yesterday comment, I think, on CoEnzyme. He seems to think it is harmful to the liver and makes joints swell. Did anyone else hear this or know about this? I think it has helped my fatigue and I surely hate to let it go. I am very happy for your daughter Jon. I know how hard they work to get scholarships and how much they mean financially to the family. It is always good to hear from Bill and the Admiral. I read too but don't feel I have much to contribute. I am still learning from the posts. Linda O, age 61, EF 24. norvlo@heartland.net


Maxine's February 14 reply to Autumn's February 13, 2001 - Hi, You must take care of yourself at all costs. I think you need to seek out a good marriage couselor. If your husband won't go, you get some help. A 12-step program might also help. It doesn't sound like your husband really wants to take care of his health, but you must value your health, and you know that you are the only one who can keep yuurself well. jusmax@milwpc.com


Ophelia's February 14 reply to Autumn's February 13, 2001 - Hi Autumn, It's funny that I had almost the same problem. About 6 months into my cardiomyopathy, my husband went to his job's health fair (just to show his face) and it turned out that his blood sugar, cholesterol, you name it, it was high. He loves junk food. He never like the sound of "diet" and eating sensibly. So I threatened to call his mom to tell her about all the tests results. He doesn't want his mom or anyone in his family to worry so the threat did it. I also asked him how it felt when I was in the hospital, when he thought he was going to lose me. I told him I didn't want to lose him so he needs to take care of himself and eat what I eat. So now sensible, low fat, low sodium, smaller portioned meals are becoming our way of life. He's even lost some weight so I'm happy. It worked out better when I actually started cooking again, so now I control how the meals are being prepared. I'll pray that your situation works out soon. You need your sweetheart around, Ophelia. omclain@hotmail.com


Yvette's February 14 reply to Jessie's February 13, 2001 - Hi, Your concern about PPCM and exercise. You should do some exercise. I was diagnosed in 1996 and was told to just rest as much as possible and lose weight. that's impossible without some exercise. In September I started cardiac rehab. Now while I have not lost weight, the exercise has improved my stamina. You may not feel up to an aerobics class but you may be able to tolorate the treadmill. Check with your doctor first. However if he tells you no exercise, find another doctor. Also, don't believe everything you may read about PPCM and think you may die in 5 years, since in most medical sites they tend to talk about people over 65 with CHF caused by age and worsened by poor lifestyle habits. mommahouse@att.net


Jon, February 14, 2001 - Hi everyone, I added an "ask Dr. Silver" page. It is my first complete draft of the page so it may change a bit or even considerably in the next week. Anyhow, you can enter questions in the form there now so Dr. Silver can start answering some. See The Doctor's Page Jon.


Ben B's February 14 reply to Davida S' February 14, 2001 - Hi, There are a lot of people here who have a lot of great information on medicines, diet, cooking, doctors, etc. I have sort of chosen to post on my beliefs, which are basically that many people give up too easily on doing things. Not all of course; some people continue to do too much. Many newcomers believe the dumb survival statstics, which are outdated. This is why I really like it when people with long-time good-news stories post. I think the problem is that when people start feeling significantly better, they stop posting. I remember when I first started reading here, I was sort of newly diagnosed and scared to death. There was a lady who was posting the saddest stories almost every day. She thought she had only a few months left, like it was a certain fact. Understandably this was very sad and a bit alarming since I have the same disease. When she stopped posting, I was certain she had died, and I didn't want to e-mail her family in case that had happened. Well, about a year later she posted again saying her EF was up and she was doing great. bdbrinkman@juno.com


Jon's February 14 reply to Ben B's February 14, 2001 - Hi Ben, You bring up a god point. However - and there's always a however, isn't there <g> - I see why people who get better don't post. The same old things are discussed endlessly here and it gets old, boring, and a bit depressing if it no longer applies to your life. So while it may be a bit harder on the rest of us not knowing how they are, I certainly understand. All of a sudden, they have renewed responsibilities they might not have been able to tackle before and their plates are full. Maybe that's why I can't get transplant stories, come to think about it. The non-success story people are too sick to write it and the success story people are too busy to write it. :-) Jon.


Anita's February 14 reply to Ann C's February 14, 2001 - Hi Ann, I am a heart transplant recipient, since April 6, 2000. From the time I was put on the waiting list until now it has been a roller coaster ride with ups and downs, good times and bad times. There are as many emotions to deal with as there are physical. The week after I returned home from the hospital from my transplant I tried putting my feelings down on paper and just couldn't keep them going. I have been asked to speak at a donor workshop in March and I have begun just now putting my story down on paper, and it's getting easier. I hope to share it when I finish. For now, I would be happy to talk to you about anything you would like to know about my experience. I am 56 years old and I'm doing fine. My new heart is great. I can breathe well for the first time in 10 years. My CHF was terminal and I had no hope for the future. Now, with my new heart, I have hope! Anita. abcox@triad.rr.com


Ginger's February 14 reply to Andrea M's February 14, 2001 - Hi, You definitely need to get your cadiologist to listen to you or go to a different one, or if all else fails go to the ER and tell them about the fainting. This has happened to my stepdad and he is now going for an EP study on the 26th. They are 95% sure he needs an ICD implanted. PVCs and palpitations that cause you to faint are the dangerous kind. A lot of us have PVCs but they don't cause us to faint. I myself had an EPS just because of the number of PVCs I was having.
     Have you even worn a Holtor Monitor or an Event Monitor? That would tell them something if they capture it. You should request one. Please demand they listen or find a new doc. This is very serious stuff. I am not trying to scare you, just trying to tell you what is going on could be dangerous for you. Plase stay in touch and let us knows how it goes. We care. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jay, February 14, 2001 - Hi,This is my first time here. I just wanted to second Brandy Lee's advice about cardiac rehab. I went through "Phase II" and "Phase III" programs and was then more or less left on my own. I continued with my own program. Though my EF has been at 17% since at least November of 1996, I exercise 4-5 days a week, dividing my time between the treadmill and stationary bike. I do my warmup, get my heart rate in my target zone and exercise for 40-60 minutes. On the few occasions I have had to miss my workout for a couple of weeks, I have found myself slipping back to feeling truly ill. For some reason, many doctors won't refer to a rehab program unless the patient requests it. Thanks for the forum, Jon. jayalanclark52@yahoo.com


William B, February 14, 2001 - Hi, I am taking 7.5mg Coumadin (warfarin) 5 days, and 10mg 2 days to try to get my protime (PT - now INR is often used) up to two. My protime keeps falling back to 1.6, it seems, every two weeks. What do some of you guys take and what does the protime measure? This is my sixth week in the rank of CHFers. Many thanks to any replies. William B. willdet@juno.com


Jon's February 14 reply to William B's February 14, 2001 - Hi William, PT or pro-time is a measure of how long it takes your blood to clot. A measurement called INR is now usually used instead. PT stands for pro-thrombin time and INR stands for International Normalized Ratio. They both measure the same response - blood clotting - but INR is the current standard way to measure it. It measures what most people think of as how "thin" their blood is. Jon.


Autumn, February 15, 2001 - Hi all, I would like to put in a good word for exercise too. My doctors not only encouraged me to exercise, they said it was imperative that I exercise. They taught me that I had to listen to all the signals from my body: from my muscles, my asthma, dizzy spells, tachycardia, fatigue levels, headache, my breathing and heart rate. They told me not to give in and quit too easily but to know when to quit for the day. I started out on the treadmill at 1.6 mph for 20 minutes and thought I couldn't bear it. Now after 15 months of gradually increasing, I work out for one hour. I warm up at 2.6 mph and work up to 3.7 - 3.9 mph. Every other day I do the exercise bike.
     For a very long time now the work-outs have been an enjoyable challenge instead of "I don't know if I can get through this." I have fallen in love with my exercise and really miss it when I have to skip. Part of why I developed such a positive attitude about my exercise is because I cannot take necessary medications due to my allergies, so I think exercise is my saving grace. Also, my GP tells me it is my lifesaver at this time. I think it really has helped improve my quality of sleep and has helped reduce stress. After a workout I have such a sense of satisfaction and peace. I am now doing my aerobic work-out and a half hour set of exercises for my back each day, so I don't have much energy left for other stuff. That's okay. I wasn't too thrilled about doing dishes anyway. <g> Just remember, start slow and work up, and have your doctor's guidance. Autumn. AmberDawn-Blzn@webtv.net


Autumn, February 15, 2001 - Hi, Thank you all for responding to the issue of my husband sabotaging my diet. I got a laugh out of your response, Bill, but often over the past year I'd just plain love to trade my husband in. <g> He sabotages himself as well as me. His nurses and orthopedic surgion will come to me and tell me it is their job to take care of his health and not his attitude, but that "I must get through to him." It's really his responsibility, but in order to try to save him from himself I try to deal with it. We have tried marriage counseling several times but he didn't take that to heart either. He has since been in therapy alone, which has helped him a lot, but he still holds fast to the sabotaging behavior. I guess since there has been improvement I have to count those blessings, and just learn to be even stronger at standing up for myself.
     Ophelia, when I went to cooking only healthy food, my husband started cooking too. He'd make all his favorite dishes or deep fried foods, and he'd make a point of making extra for me. Or he'd bring home all sorts of sweets for me. When I'd refuse, he'd take it as a personal insult. Tonight we agreed he will not eat all that stuff in front of me. Our meals together will be healthy. If he chooses to cook his favorites it will be when I am not around. If he breaks the agreement I will no longer eat my meals with him. Meals together are important to him so I hope this incentive works. If not, I will have to be strong and put taking care of myself above keeping peace with him. I need to look a this as an opportunity to grow and become a stronger person. Thank you all for your encouragement, Autumn. AmberDawn-Blzn@webtv.net


Brian, February 15, 2001 - Hi, Any ideas about a low-salt ricotta cheese or substitute? I'd like to make ravioli. The more I cook low salt and cheat, the more I realize how much of a difference this makes. Thanks! bpgruber@yahoo.com


James M's February 15 reply to William B's February 15, 2001 - Hi, I also take Coumadin (warfarin) 2.5mg every day except 2 days when I take 5mg. I spread these days out so my INR stays about the same all the time. My INR stays around 2.7 to 3.0, which is where the doctor wants it due to my valve replacement and the fact that I have severe a-fib. This medication, like most other medications, can be dangerous stuff if you don't take it right.
     Your diet has a lot to do with your INR also. Anything you eat containing vitamin K will lower your numbers. My wife is very careful about serving green vegetables in her efforts to keep me at the proper levels. You should have gotten a book on Coumadin when you first started the medication. I suggest you read it carefully to find out what foods you can and cannot eat too much of. When I first went on the medication my wife taped this book to the cabinet door so that she could always find it. To this day, she still refers to it regularly and I have been on it for 5 years now due to the a-fib. My valve job was done just a few months ago and because of her I am doing great now.
     If you are not preparing your meals but someone else is, I suggest you have them read this book also. I am sure that if you pay attention to your diet and take your medication as your doctor prescribes, your numbers will eventually level out to where your doctor wants them. Best of luck and keep the faith, James M. seymour9@bellsouth.net
 
Jon's note: To put what James said another way, keep vitamin K heavy food intake consistent, rather than avoiding it altogether


Wayne S, February 15, 2001 - Hello Everyone, I hope everyone is doing well. It has been awhile since I posted. I quit smoking the first of the year, after 30 years of smoking, with lots of help from Jesus. On one of my blood tests my liver enzymes were high so I was taken off Lasix and potassium. I was put on spironolactone (Aldactone) and zaroxolyn. This does not seem to work as well as Lasix. Also, since being taken off potassium I seem to get cramps in my legs. This is a sign of not enough potassium, I believe. I do not seem to be retaining fliuds so I guess these new directics are enough. God bless everyone, Wayne S, IDCM, CHF. frances@blkbox.com


Jon's February 15 reply to Wayne S' February 15, 2001 - Hi Wayne, You still need to have your potassium blood levels checked at least every 3 months! Some drugs - rather than being potassium depleting like Lasix - are potassium sparing. That means they cause your body to hold potassium longer than usual. Aldactone, thiazide diuretics like zaroxolyn, and ACE inhibitors are potassium sparing. Both too much and too little potassium can be equally dangerous. Get that blood level checked, really. Jon.


Sue's February 15 reply to Ann C's February 14, 2001 - Hi, Jon is right, I feel great and my plate is full. I received a heart transplant December 13, 2000. I started the testing on July 18, listed on October 18, and was transplanted on December 13 last year. It happened fast so I didn't have a lot of time to think about it. I still went through the different emotions that everyone has. What really helped me was my support group of friends and family, and all the prayers! A day doesn't go by that I don't say a prayer of thanks for the donor family. Like Anita said in her post, it's hard to put into words the overwhelming feelings of hope you have after transplant. Everything is going great. Anytime you or anyone want to talk, I'm here. Take care. fainth@core.com


Lee R's February 15 reply to Andrea M's February 14, 2001 - Hi Andrea, Please heed Jon's advice. You definitely need a cardiologist who will take the fainting spells seriously. An electrophysiologist is a cardiologist who specializes in arrhythmias. I was having a similar problem and was tested with an electrophysiology study and found to have polymorphic VT (ventricular tachycardia). The end result was a defibrillator/pacemaker (AICD) implanted under my collarbone with two leads into the heart. This gadget watches my heart for rapid heart beats that can lead to unconsciousness and gives me a shock to bring my heart back to sinus (normal) rhythm. It has saved my life 3 times.
     There is a site by the makers of my ICD called Medtronics where you can go for more information. Insist that the cardiologist refer you to an electrophysiologist. I'm sure Medtronics could help you with a doctor's name in your area. Don't hesitate to write if you need more help. Bestest to you and please keep in touch with all of us. Lee R. LeeJRoush@msn.com


Kathy's February 15 reply to Ann C's February 14, 2001 - Hi Ann, I just wanted to let you know that I've just gotten home after receiving a heart transplant on January 29. I'd love to talk with you about any or all of of it, so feel free to e-mail me. Kathy. kathynpete@mediaone.net


Andrea M, February 15, 2001 - Hi, Thanks to everyone who e-mailed me or posted responses to me. I went to my cardiologist's office very close to closing time yesterday and demanded to be seen immediately. I told them I would not leave until I had a satisfactory reason explained to me why I am having so many rhythm problems. I cannot believe I did that! The result of my tirade is that I have PVCs, PACs, and supraventricular arrythmia. I was on a monitor in the office for 1½ hours and had 29 runs of SVA. Luckily, my heart rate never got over 169; normal for me is 60 or so. My BP of course, rose and fell dramatically during all this, thus the fainting. For now, we have increased my beta-blocker (metoprolol) dose. Hopefully this will do the trick to keep me in an acceptable rhythm. Thanks again to all of you for thinking of me and for the advice. God bless you, Andrea M. lumina912001@yahoo.com


Jon's February 15 reply to Andrea M's February 15, 2001 - Hi Andrea, I am glad you got some medical attention. I know I sound like a broken record but I still worry about you. Ventricular arrhythmias are potentially lethal. They are nothing like PACs or PVCs. Did you see an actual electrophysiologist? This is crucial to your survival. I know nothing abut your options but if you had to go to such lengths just to get adequate medical attention for a potentially life-threatening problem, you really need a better cardiologist, and soon!
     SVT is very dangerous and different drug therapy or an implant may be necessary to stop potential sudden cardiac death. I just want you to be sure that your docs really have everything under control. They've yanked your chain pretty badly so far and may still be doing so. If it is not potentially lethal in your case, they should have made that fact crystal clear to you long ago. Not to do so is almost as bad as letting it go if it is that dangerous. Jon.


Wayne Allen, February 15, 2001 - Hi, I applied for SS Disability 1-8-01 and was approved 2-9-01. Four weeks and on the first application, praise the Lord. I just wanted to encourage some that it is not always hard. Wayne in Tennessee. wwallen@midsouth.rr.com


Jon, February 15, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Desktop Wallpapers
  2. ICDs page
  3. CHF Guidelines
  4. Medspeak
  5. New CHF Meds

Jon.


Anna's February 15 reply to Wayne Allen's February 15, 2001 - Thank you Wayne, for your encouragement for us. Do you have any tips, like what you included in your Disability application, etc,...,? snowyegret7@excite.com


David A, February 15, 2001 - Hello to everyone, At my last doctor's appointment I was connected up again to some new technology (to me at least). The theory is that this instrument can cut procedure and clinical costs by what it can measure and by its simplicity. The big claim by the company that makes this monitor is that the unit can replace the Swan-Ganz catheter procedure with the measurments it provides for the doctor. Measurements include cardiac output, systemic vascular resistance, contractility and fluid level. The system is called the Bio Z Noninvasive Hemodynamic Monitor. The technology is known as ICG or Impedance Cardiography. Cardiodynamics makes it.
     My question is, "Have any of you been profiled by this instrument? If so, how did your results compare to other tests given to you that measure similar points?" Evidently, my cardiac output has decreased since my September of 2000 reading versus my most recent test at the beginning of February, 2001. Now I am questioning the accuracy of this technolgy. Thanks to all. DEZEN@worldnet.att.net


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

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