The paperwork never ends The Archives
July 16-31, 2001 Archive Index CHFpatients.com

Joyce 7-16     what are PVCs?
 
Frank S' 7-16 reply to Bill B's 7-14     talking to your daughter about your CHF
 
Karen S 7-16     mixup on drug names & availability
 
Jack D 7-16     altered heart surgery on tv
 
Ginger's 7-16 reply to Kathleen's 7-14     L-carnitine info, great newsletter & more
 
Sammy L 7-16     burning in legs and feet question
 
Flo 7-16     many questions about DCM
 
William B's 7-16 reply to Yvette's 7-14     I agree
 
Frank S' 7-16 reply to Sammy L's 7-16     peripheral neuropathy possibility
 
Tom S 7-16     Rx drug help for veterans & more
 
Monica Byrne 7-16     seek CHF doc in Orlando, Florida area
 
Bill D 7-16     AMA owned but required medical codes
 
John M 7-16     seek CHF doc in Dallas, Texas, area
 
Ernest D's 7-17 reply to Kathleen T's July 14     Coreg & lower limb pain, circulation
 
Ruthie A's 7-17 reply to Alexis' 7-14     diastolic dysfunction a possibility
 
Loretta's 7-17 reply to Bill D's 7-16     CPT codes
 
Wendy B's 7-17 reply to Kathleen T's 7-14     aching feet and potassium
 
Eddie Power 7-17     blood thinners & dealing with cold questions
 
Karen S' 7-18 reply to Eddie Power's 7-17     blood thinners and cold
 
Pauline 7-18     questoins - decompensation, cor pulmonale & more
 
Jon's 7-18 reply to Pauline's 7-18     decompensation, cor pulmonale & more
 
Donna Z's 7-18 reply to Jack D's 7-16     Batista procedure, artificial heart
 
Joe S 7-18     still feel bad - any ideas? & prayer request
 
Jon's 7-18 reply to Joe S' 7-18     possibilities
 
Tony C's 7-18 reply to Kathleen T's 7-14     CoQ10 dose
 
Jon 7-19     page updates
 
Vee's 7-19 reply to Joe S' 7-18     possibility, BP question
 
Debra C 7-19     swelling every month -any ideas?
 
Mike W's 7-20 reply to Debra C's 7-19     is this menstruation-related?
 
Tracey C 7-20     is abnormal wall motion common?
 
Jon's 7-20 reply to Tracey C's 7-20     I think so
 
Ginger's 7-20 reply to Bill's 7-14     place for teens to talk & new web site!
 
Jon 7-21     a big oops & page updates
 
Jamie S' 7-21 reply to Joe S' 7-18     problems related to sun and heat
 
Karen S' 7-21 reply to Mike W's 7-20     that time of the month
 
Robert J 7-21     has anyone else experienced this?
 
Wanda 7-21     why would I need a BioZ test?
 
Carl C 7-21     intro, heart transplant questions
 
Mark 7-21     prior drug use questions
 
Jon's 7-21 reply to Mark's 7-21     prior drug use, current CHF
 
Tracey C 7-21     meds reduction & worries, pain question
 
Ben B 7-22     has anyone else had EPS but got no ICD?
 
Ben B's 7-22 reply to Carl C's 7-21     transplant info Url
 
Taavi K's 7-22 reply to Carl C's 7-21     transplant info Url
 
Jack D's 7-22 reply to Mark's 7-21     drug use
 
Ginger 7-22     what is BioZ?
 
Jon's 7-22 reply to Ginger's 7-22     heart monitors but that's all I know
 
Jon 7-22     my mailing list should be back in action
 
Ginger's 7-22 reply to Jon's 7-21     pooters and message boards
 
Jon's 7-22 reply to Ginger's 7-22     pooters and message boards
 
Ginger's 7-22 reply to Jon's 7-21     numbers versus exercise ability
 
Ginger's 7-22 reply to Tracey's 7-21     stay on meds, Lanoxin & fatigue, and more
 
Jon 7-24     I'm back
 
Stephanie's 7-24 reply to Tracey's 7-21     arm pit pain & more
 
Ginger's 7-24 reply to Ben B's 7-22     EPS experience with no ICD resulting
 
Thelma's 7-24 reply to Ben B's 7-22     EPS experience with no ICD resulting
 
Gwen Sander's 7-24 reply to Ginger's 7-22     carpal tunnel experience
 
Autumn's 7-24 reply to Jack D's 7-22     Rx meds, taking charge & more
 
Dana Goff, 7-24     questions about diuretic regimes & more
 
Wanda S' 7-24 reply to Ginger's 7-22     BioZ test
 
Autumn's 7-24 reply to Ginger's 7-22     diet, exercise, doctors & some questions
 
Jon's 7-24 reply to Autumn's 7-24     echo frequency
 
Mark 7-24     any news on artificial heart patient?
 
Sammy L's 7-24 reply to Tracey's 7-21     arm pit pain experience
 
Diane 7-24     questions about long term disability & county disability
 
Ken 7-24     Coreg & prostate questions, and more
 
Lee R's 7-24 reply to Ben B's 7-22     EPS experience with no ICD resulting
 
Wendy B 7-24     alcohol use and CHF
 
Jon's 7-24 reply to Wendy B's 7-24     my reply was limited to Mark's post
 
Lee R's 7-24 reply to Tracey's 7-21     Lanoxin & question about Aldactone
 
Ernest D's 7-25 reply to Ben B's 7-22     EPS without ICD resulting
 
Carl C 7-25     heart transplant
 
Mary 7-25     SOB when starting Coreg - question
 
Jesse B 7-25     to Sharon J W about pickle recipe
 
Jon 7-25     to mailing list members
 
Jon 7-26     mailing list, page updates
 
Joshua 7-26     two books I recommend
 
Bill D's 7-26 reply to Dana Goff's 7-24     all those meds & more
 
Doug Toovey 7-26     seek some advice
 
Anthony P 7-26     questions - gas, belching, pain & more
 
Katherine's 7-26 reply to Mary's 7-25     asthma and Coreg experience
 
Dorothy's 7-26 reply to Autumn's 7-24     Calan, doctors & more
 
Marty's 7-26 reply to Diane's 7-24     Disability experience
 
John Len 7-26     cinnamon & neuropathy
 
Cristina L 7-26     I agree with Amber & Cordarone question
 
Jon's 7-26 reply to Cristina L's 7-26     medical information on the web
 
Janet 7-27     Sporanox linked to DCM, CHF
 
Ann C 7-27     I got a donor heart! :-)
 
Jeanette W's 7-27 reply to Mary's 7-25     Coreg and shortness of breath
 
Jeanette W's 7-27 reply to Ben B's 7-22     ICDs and EPS (EP studies)
 
Jon 7-28     back, slowly
 
Jon 7-31     back, slowly, slowly
 
Vicki Herbert's 7-31 reply to Monica's 7-16     transplant lists, doctors
 
Jim 7-31     question
 
Anita C's 7-31 reply to Carl C's 7-25     transplant donor info
 
Joe S' 7-31 reply to Anthony's 7-26     diet and symptoms, good article
 
Dorothy 7-31     systolic blood pressure question
 
Ben B's 7-31 reply to Christina L's 7-26     medical info on the web
 
Jeanette's 7-31 reply to Doug T's 7-26     better safe than sorry
 
Abdul Rasheed 7-31     seek Urls
 
Ginger 7-31     docs, heat, magnesium, kittens & more
 
Jon's 7-31 reply to Ginger's 7-31     finding a new doc
 
Christy W's 7-31 reply to Mark's 7-24     artificial heart recipient
 
Stephanie's 7-31 reply to Mary's 7-25     Coreg dose increases
 
Bill B 7-31     thank you all for advice


Joyce, July 16, 2001 - Hi, What does it mean when you are told you are throwing PVCs in regards to your heart. joie6800@aol.com


Frank S' July 16 reply to Bill B's July 14, 2001 - Dear Bill, Perhaps you do not give your daughter enough credit, even though she is only a teenager. I have a daughter and believe me, when put to the test, most young people are as courageous as most adults. If you feel that you are not compassionate enough nor articulate enough to help her understand that you are just not as healthy as other people and may die sooner than what is considered normal for your age, then give her a suggestion that knowledge is power over the unknown, and ask her to read all about your affliction in The Manual. Encourage her to ask you questions as you lovingly sit beside her while she reads. This is what I describe as quality time between a father and daughter. God bless and good luck. Later, Frank. fmsmith@inreach.com


Karen S, July 16, 2001 - Hi, I think that there was a mix up about which drug was available or not in the USA. I am Canadian taking a drug called Sintrom instead of Coumadin. It, the Sintrom, is the drug that may not be commercially available in the USA, not spironolactone. I hope that clears up any confusion. kesalyn@hotmail.com
 
Jon's note: That was my fault! I tagged the wrong Karen's post with the comment. Sorry! (fixed the comment now, too)


Jack D, July 16, 2001 - Hi, Did anyone one see the "new and improved" Batista procedure on Discovery? It was really interesting. It's much more precise and detailed than the original and has a lot more steps to try and bring about a working finished product. You'll have to contact Discovery to get the details but it is being used more now. maddjak@hotmail.com


Ginger's July 16 reply to Kathleen's July 14, 2001 - Hi Kathleen, Yep, I do. I also have bad lower back problems that may be causing it. It also can be poor circulation. There was just recently a trial published on L-carnitine and it helping circulation in the legs. If you want to read it, check out http://cardiology.medscape.com/39515.rhtml?srcmp=card-062901. However, if it is circulation, you ought to really go get it checked out. I haven't yet but will bring it up at my next appointment, which is Wednesday. Hugs and prayers, Ginger.
     PS. I have no clue if any of your meds could cause it. By the way, if you all want some really good information, subscribe to Jon's Healthology Newsletter. It is really good. It is just good info all the way around. You ought to check it out, it's neat. ginger@heart-help.net
 
Jon's note: Go to the Site Index and click on the Healthology graphic at the top of the page to the right. You'll find all the stuff Ginger is talking about there, with sign-up at the bottom of the page ;-)


Sammy L, July 16, 2001 - Hi, Within the last 2 or 3 weeks, the soles of my feet and my toes burn as if there is a sunburn. It's also like the flushing I get for a few minutes after I take my niacin. Sometimes the sensation crawls up my legs to my thighs. I called my cardio doc because I was concerned and I have stents in my illiacs and severe vascular disease in my legs but no blockages. I also contacted my sleep doc since I have RLS, and thought maybe I was having a reaction to mirapex, or the RLS was just worse.
     Does anyone else experience this? Have your docs responded to the complaint? The 2 docs I called weren't terribly concerned and told me to call my PCP, who is out of town. :-( I don't trust anyone else. The color in my legs and feet remain good, with no additional swelling and the pulses are strong. Thanks, Sammy. SammyL@home.com


Flo, July 16, 2001 - Hi, Is there a place I can read about the onset of DCM? I was diagnosed in May. After the cath, my cardiologist told my family that I will not get any worse. My EF is 30%. I am 63 and a previous stroke victim. I went to the ER because of stroke symptoms and that's when the murmur was found that led to a stress test, echo, MUGA, and cath.
     If it were caused by infection either viral or bacterial, is it true all the damage was done at one time? If I or anyone, had DCM for a long period of time, would the damage always have been at the same level? Does anyone know the early symptoms of DCM? Can most people look back and pinpoint the onset of their illness? Or can it progessively get worse? Flo. floddo@neo.rr.com


William B's July 16 reply toYvette's July 14, 2001 - Hi Yvette, Amen and Amen, William B. willdet@juno.com


Frank S' July 16 reply to Sammy L's July 16, 2001 - Hi, Some people who take lots of perscription meds develop peripheral neuropathy and your symptoms could be akin to that disease. I suffer, and I mean suffer, from this neuropathy. Once the nerves are damaged there is little we who have that trouble can do. Even pain meds don't help much. Check it out and I hope I'm wrong. Later, Frank. fmsmith@inreach.com


Tom S, July 16, 2001 - Hi, If you are a United States veteran of any branch of US military service and more importantly, any era, and are in need of free or nearly free medications, I would advise you to contact your nearest Veteran's Administration Hospital and apply for benefits. As it stands right now they are accepting all veterans, and it is my understanding that in some cases they are also accepting spouses of veterans. The benefits are well worth the small amount of time and effort you will expend in the application process.
     The benefits include free or a $2 co-pay fee per prescription for 3 months supply of all your current medications and any prescribed in the future; and very low co-pay for any medical treatment you get at the VA. They also provide diabetic supplies at the same low co-pay fee. They will mail you 3 months supply of each medication as you need it and bill you separately for the co-pay.
     I missed the boat for 5 years on this deal and needlessly spent thousands of dollars because I believed all the horror stories I had heard about the VA. To my surprise, none of them seem to be true. It was better than going to my local doctor and they took a lot of time with me and explained all the benefits, and treatments available. I am fortunate because I have the choice of 3 VA facilities within 50 to 100 miles of my home on interstate highways. I chose one outside of Charlotte because I was told it was a better facility and less of a "zoo."
     My drugs include Coreg, Lasix and potassium. Frankly, I was not able to buy potassium or take Lasix for weeks at a time because I did not have the money to pay for them. I also take Aldactone, aspirin, and Glucatrol. Within 10 days of my visit I indeed received via US Postal Service 3 months supply for each prescription including the aspirin, and was told I can get the diabetic supplies the same way. By the way, I was told they use the "Precision" glucometer and they also provide that for the $2 co-pay.
     I originally got the process started by applying in December and received notice of my first appointment for July 3rd, in early June. It does take time but I think it is worth it. You will need a copy of your military discharge papers form DD214. That can be obtained in pretty short order from the St. Louis records center which is listed online. You can also check out the Veteran's Administration web site for additional application details. bhiggerbhoy@hotmail.com


Monica Byrne, July 16, 2001 - Hi, Can anyone recommend a good CHF specialist in the greater Orlando, Florida area, specifically Longwood or Altamonte Springs? monicaby@cfl.rr.com


Bill D, July 16, 2001 - Hi All, Do you remember all the 5 digit codes your doctor uses? They are called CPT-4 codes, short for "Current Procedural Terminology." They are secret because the AMA and HCFA got together and made an agreement in 1983! They charge you a $175 fee to get them. How are we supposed to cry "Fraud!" when we don't know what has been done to us? You might like go to this site and see what's what. Just use their example of "Out Patient Visit" to see what they have to say - www.myhealthscore.com/consumer/phyoutcptsearch.htm, Bill D. billdog11@earthlink.net
 
Jon's note: In case you were not aware, the legal possession of these codes and the fact that the US government forces their use is the main source of income for the AMA - not member dues (their membership is slipping badly)


John M, July 16, 2001 - Hi, I was recently diagnosed with heart failure. After trying to ignore the issue I finally got on the Net and started searching for info. Thank you Jon, for an eye-opening site and for all your work and dedication! Anyway, I have been derelict in going back to see my doctor. I still haven't had my cath done.
     Is anyone living in the Dallas, Texas area, specifically the far north part near Plano or Carrollton? If so, do you know of a CHF specialist or CHF clinic in this area? johnotha@earthlink.net


Ernest D's July 17 reply to Kathleen T's July 14, 2001 - Hi to all, In answer to you Kathleen, I have had bad leg and lower back pain, which was caused by Coreg. I discovered this when my Coreg dose was reduced and the pain diminished. The good news is that after awhile, even on the higher dosages, the pain does get better, at least for me. Coreg has some kind of effect on the circulation of the extremities according to a CHF doc at the transplant clinic. I do not remember the technical words he used; Sorry I don't have more info. Good luck to all with this problem, Ernest D. xerez@worldnet.att.net


Ruthie A's July 17 reply to Alexis' July 14, 2001 - Hi Alexis, What do you mean by "hardened?" You may not know and would need to ask your doc, but did he mean that parts of your heart were stiff? With high blood pressure, a normal EF, and a stiff heart, you may be describing diastolic dysfunction - the type of CHF I have.
     Of course, you need to check with your doctor about it, but I must caution you. Many cardiologists and even some CHF specialists don't have a clue what diastolic dysfunction is or what it looks like. According to what they know, you do not have heart problems. While you are well compensated and stable you may not appear to have heart problems, but if you decompensate you can be in big trouble just like those who suffer from systolic dysfunction.
     This lack of knowledge is a big problem in the CHF specialist community. For instance, there are specific medication protocols for treating systolic dysfunction but there are no protocols in place at all for treating diastolic dysfunction. In fact, it has just been in the last year or so that diagnostic protocols have been defined. No one prior to that seemed to be able to figure out exactly how to determine if a patient had diastolic dysfunction in the first place! So who knows in your case? Read all you can find and check with your doctor. Maybe you can learn together, Ruthie A. rlaba51@yahoo.com


Loretta's July 17 reply to Bill D's July 16, 2001 - Hi Bill, Setting patient charges for certain CPT codes use to be one of my jobs. Books can be bought that list the codes and descriptions. Also, I found them under the Federal Registry on the Internet. The rates vary by the hospital or physician who sets them. The actual amount reimbursed is based on the insurance provider. I still have a a database set up on my computer which handles operative services codes. lorettad7@home.com


Wendy B's July 17 reply to Kathleen T's July 14, 2001 - Hi Kathleen, I had aching feet too and I kept being afraid that the swelling was going to start again. However, at the suggestion of my doctor, I went back to taking potassium. I had stopped because we lowered my Lasix dose. The minute I started taking the potassium the aching stopped, so you might want to check with your doctor about this; Or eat more bananas and oranges! boozw@hotmail.com


Eddie Power, July 17, 2001 - Hi, I am a 49 year old male recently diagnosed with DCM and a-fib. I have an EF of 34% up from 28%, and am on the standard medications of beta-blocker, ACE inhibitor, diuretic and blood thinner (warfarin). I have a query that I'm hoping someone can help me with. It concerns the blood thinning effect of warfarin (Coumadin).
     Is it an old wives' tale that you feel the cold more with thin blood? The reason I ask is that I like to fly fish. In the summer when the water temperature reaches about 17° C, I usually "wet wade," dispensing with the chest waders and just going into the river in an old pair of jeans. The water feels a little cold to begin with but I get accustomed to it fairly quickly and sometimes spend up to 4 or 5 hours in the river with the water up to my waist.
     The medication has made my BP quite low. My wife is concerned that with my thin blood and low BP, I may be susceptible to circulation problems in my legs from the cold water. Is this possible? Are any fly-fishers with DCM and a-fib interested in occasional correspondence? I do mean occasional since I'm not the most prolific of correspondents. eddiepower1@ireland.com


Karen S' July 18 reply to Eddie Power's July 17, 2001 - Hi Eddie, I have been on anticoagulants for several years now and do not have any problems with cold weather or cold water. If you could handle cold water before, you should be able to now. I do believe that is just an old wives' tale. Here is a site that you can read how they work: www.findarticles.com/cf_dis/g2601/0000/2601000097/p1/article.jhtml. I think this will help you. kesalyn@hotmail.com


Pauline, July 18, 2001 - Hello everyone, Has anyone ever heard of flash pulmonary edema or cor pulmonale? What are these conditons, and where might one learn more about them? I think both are forms of heart failure. Also, with heart failure is it possible to present with CHF - shortness of breath, edema, decompensation - yet after several months have a heart cath that doesn't show decompensation or extremely high pressures, and still have symptoms? Also, what are interstitial changes in a chest x-ray? Thanks in advance for any help, Pauline. VivaGesuAveMaria@aol.com


Jon's July 18 reply to Pauline's July 18, 2001 - Hi Pauline, I am not a doctor and these are off the top of my head but for what it's worth, flash pulmonary edema is sudden-onset lung congestion, in which you can go from completely fine to near death in 30 minutes or less. It is rare but it happens.
     Cor pulmonale - I think - is right-sided heart disease with enlargement that is caused by lung disease or problems with the pulmonary arteries.
     You can find web sites that have information on just about everything about the heart through my Links page and the related downloadable favorites.
     A heart cath will not actually "show" decompensation, necessarily. Decompensation is a serious worsening of heart failure - which is a set of symptoms. You can have symptoms and still have a fairly strong heart, which is what will show on cath. You can also have a very weak heart and show no symptoms - it's a very complex illness. This is probably better explained in The Manual. I would have to double-check on the interstitial problem. I think I know what it is but you can probably look it up as fast as I can. ;-) Jon.


Donna Z's July 18 reply to Jack D's July 16, 2001 - Hi Jack, I asked my CHF specialist about the Batista heart method and she said they no longer do that procedure because it doesn't work well. So the University of Penn does not do it anymore. My doctor said they did not have great success with the procedure.
     The Abiocor heart so far seems to be doing it's job, we should all pray for this brave man and his family and send our thought and prayers for him that he continues to improve, Donna. dzak@worldnet.att.net
 
Jon's note: Please keep in mind that the artificial heart recipient is likely to die witin 60 days of his implant (although I hope he doesn't). It's a phase one safety trial


Joe S, July 18, 2001 - Hi Trisha and all, This bad feeling from walking in the sun has now lasted 3 days. Yesterday I felt rotten and began drinking glass after glass of water and began to feel well immediately. I know you recomend us to track our water intake Jon, but when we don't, what in the world happens to us? Any suggestions on how to keep water cool on a desert hot day?
     One more thing: My eldest son, aged 40, called yesterday and now he has diabetes, along with his rheumatoid arthritis being bad. His name is Frank, please pray for him. Joe S. jes@gbis.com


Jon's July 18 reply to Joe S's July 18, 2001 - Hi Joe, A couple of things come to mind. If the cause is the sun, you need to be immediately examined for heat exhaustion and dehydration so your electrolytes don't get totally out of whack.
     What if it's not from the sun exposure? What if it's the walking that did it? The "fatigue hangover" from overdoing it physically with a weak heart is usually worst on the third day. Also, what if it is neither, but something else that just happened to occur at roughly the same time? We always have to be careful we don't so strongly associate a result with one possible cause that we overlook all other possible causes. That can be dangerous. See your doctor immediately and discover the true cause of your unwellness. That's my advice. Jon.


Tony C's July 18 reply to Kathleen T's July 14, 2001 - Hi Kathleen, I'm not any kind of expert on supplements, so I use a book called "Prescription for Nutritional Healing" by Phyllis Balch, CNC, and James Balch, MD. Under it's section on cardiovascular disease the suggested dosage for CoQ10 is 50 to 100mg 3 times daily. It also lists many other supplements to be taken listed by importance. I have found this book to be a major reference for those into holistic healing. For anyone wanting to get it, you can find it in most health food stores or buy it cheaper in Wal-Mart like I did. mrtonyc@hotmail.com


Jon, July 19, 2001 - Hi everyone, The following pages on my site have been updated:

  1. Randy B's bio
  2. Edema page
  3. Windows Wallpapers
  4. Nutrient Stew - Minerals
  5. ACE Inhibitors
  6. Links page - Medical Dictionaries
  7. Heart Failure page
  8. Medspeak

Jon.


Vee's July 19 reply to Joe S' July 18, 2001 - Hi Joe, Didn't you say earlier that you were recently diagnosed with diabetes? How are your blood sugars? Some of the symptoms you describe are like those for severe hyperglycemia, especially wanting to drink lots of water along with feeling tired and kind of nauseous. On the other hand, your symptoms could be from a lot of other things instead. In any case, you should get checked out by a doctor pronto.
     On another subject, I'm wondering whether you've gotten your blood pressure under control by now and what was the cause of that? maize2001@hotmail.com


Debra C, July 19, 2001 - Hi, Does anyone else have swollen feet and legs every month? I do and am taking Lasix twice a day. My PCP doesn't seem to worry about this. Any ideas would be a big help to me. I think I need to ask for a different doctor. Also, I am not being seen by a cardiologist. I receive treatment through the VA hospital here in Louisville, Kentucky. Thanks, Debra. lcaple@bellsouth.net


Mike W's July 20 reply to Debra C's July 19, 2001 - Hi Debra, When you say each month, do you mean constantly or at certain times of the month? What I'm leading to as genteely as possible is menstruation. I can't recall any female members of the board talking about increased edema during mentruation, and from what little I know of such things <g> I would think that that could be an issue. Of course ladies, I am probably talking out of the top of my hat!? Regards, Mike Wafkowski. mikeyw@sohogurus.net


Tracey C, July 20, 2001 - Hi everyone, I asked this awhile ago but no one responded and it's still bugging me. My echo shows mild abnormal wall motion and I'm wondering if anyone else has abnormal wall motion. My doctor seems perplexed as to why I have this. I just assumed it came hand in hand with the CM. As always, any response is appreciated. Thanks, Tracey. 2tcollins@home.com


Jon's July 20 reply to Tracey C's July 20, 2001 - Hi Tracey, I assume lots of CHFers have this on their echos. Of the echo reports people send me asking for help understanding them, 90% show this. I also assume that all the CHFers who are helped by biventricular pacemakers - in trials now - show this as well. Their heart chambers do not beat in proper synchronization so that must make some chronic abnormal wall motion show up, wouldn't you think? Jon.


Ginger's July 20 reply to Bill's July 14, 2001 - Hiya Bill, If you do decide to tell your daughter the truth, it might help her to talk with another teenager who has a parent with this and has been going through it for 3 years. My daughter has a support forum for children of CHFers. She is 15, but not a young 15. She has pretty well adjusted to living with this. Her forum is called Kid Talk and Jon has a link to it on his Links page. (Jon's note: - go straight to Kid Talk here). My daughter would be more then happy to talk with her. We have to remember that kids and teenagers need support too.
     Now for an announcement: Lee Roush and I have joined forces and combined our sites into one web site located at www.heart-help.net. We pretty much have redone the whole site. It is not finished but as Jon can tell you, they never are. <lol> We do have a lot of links to different places here of course. We are pretty proud of the site we have made and the opportunity to help more people this way. Stay well, y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon, July 21, 2001 - Hi everyone, Well, Part of my computer fried today, literally. What a nasty burning smell, complete with sparks. I take the whole thing in Monday to get a new motherboard, half my RAM replaced, a new modem, and a hard drive addition, about 500 dollars worth. The message boards will be down 2 to 3 days as a result but I hope to be down no longer than that. So it goes.
     The following pages on my site have been added or upgraded:

  1. Medspeak
  2. Heart Failure page
  3. Echocardiogram page
  4. New bio - Eris D

Jon.


Jamie S' July 21 reply to Joe S' July 18, 2001 - Hello Joe and Trisha, I have a huge problem with sun fatigue. I have no idea why. I've mentioned it to a couple of doctors and they just think it's interesting. When I know I'll be in the sun for awhile I wear a long-sleeved white shirt of light cotton, sunglasses, and if I remember my hat all the better. I drink lots of water before leaving and keep drinking it throughout the day. Take shade whenever you come across it. I also get migraines from sun and heat so I totally limit my outside time from 1:00pm to 5:00pm. It's not worth getting a full blown migraine or fatigue that lasts for hours or days when a few hours a day cuts my suffering. If I ever find out what it is about the sun and fatigue, I'll let you know. Jon is right to also get that stuff checked out. It never hurts, well, except the needle. Jamie, age31, PPCM survior. jamiedan@optonline.net


Karen S' July 21 reply to Mike W's July 20, 2001 - Hi, Yesterday after reading Debra's query, I e-mailed her. I know that for myself, I would have even more abdominal and ankle swelling than normal at my time of the month. I would feel much worse than usual with the extra congestion and I felt much relief when my period was over. One doctor I saw agreed with me that this was the likely cause because we as women do tend to retain water then. Good for you, Mike, for answering publicly, so to speak. kesalyn@hotmail.com


Robert J, July 21, 2001 - Hi Everybody, This is my first post on this site. I also belong to The Zapper because along with CHF, I also have one of those DCDs in me. It is really an ICD (defibrillator) but someone changed the name to DCD for "Dick Cheney Device."
     I have a question for anyone who may have some knowledge on exercise. I've pretty much been a beer guzzling, heavy smoking, couch potato most of my life. The fact that I tip the scales at 300 lbs plus bears that out. In 1994 I was diagnosed with Hodgkin's Disease and supposedly beat that. I was treated with adriamycin, which is famous for causing heart damage. Add that to the fact that I'm diabetic and with my previous lifestyle I guess I got a triple whammy.
     Anyway, here is the good part: The cardiologist I see asked me if I wanted to try cardiac rehab at the hospital. I did and I was proud of myself for doing so well. They even offered to allow me to continue for free just so they could watch me improve. I think they may have been grooming me to be their poster teddy bear. I've been told my ejection fraction is 10%. A month ago I bought a treadmill and I'm doing up to 2 1/2 miles per day at speeds up to 2.8 mph. Almost everybody I talk with is abslolutely amazed at this. Is there anyone out there with similar experiences? I hope this isn't the calm before the storm. I feel better now than I have in years. Except for the shortness of breath I don't notice any other symptoms and I only notice shortness of breath if I try to jog or walk uphill. Thanks for reading my story, Bob. RobertJ@ezaccess.net


Wanda, July 21, 2001 - Hi, I received a letter from my heart doctor requesting I come in for a BioZ com test. Can anyone tell me why they would do this? mom6@bright.net
 
Jon's note: Maybe because it's a money-maker for them? <g>


Carl C, July 21, 2001 - Hi, I have idiopathic dilated cardiomyopathy diagnosed 7/92. That means they don't know what caused it. It is still CHF. I have PVCs and slow short runs of V-Tach. I have a Medtronic Gem II ICD. It's my second such device. I spent 6 months at status 2 on a heart transplant list in 1995, being implanted with my first ICD and having an EF of 12%. Prayer, good doctoring, and meds got me up to a 25% EF and onto the inactive list.
     This past February I had two defibs due to increased PVCs and slow VT of 146 bpm. I've been back ot status 2 on a heart transplant list since 3/1/01 with an EF of 17%. I know there are a lot worse cases but still must deal with mine. My ICD now detects and delivers "therapy" to the slow VT, with no more defibs since mid-February, thankfully. I've found effective adjustment to lower my PVCs in 0.75mg Xanax 4 times a day. My beta-blocker, Toprol-XL, was increased from 100mg per day to 175mg per day, which really slows me down.
     I awake from sound sleep between 2:30 and 4:30am most mornings and just toss and turn until I get up between 7:00 and 8:00am. I have 10% hearing in my left ear, tinnitis in both ears, and right eye strabismus. Like most others, I've certainly given myself permission to have down moments and down days. It happens. I'm 49 with a wife who has just finished chemo and radiation after cancerous left breast mastectomy last July. I have 3 daughters, ages 12, 16 and 19. I stay busy with 10 cent chores, etc,..., necessary for daily living. Sometimes I don't get that far.
     The biggy is, what questions should I ask, or what information should I expect when the heart transplant nurse calls or pages me at midnight telling me they have a new heart for me, if it's meant to be? I'm type O- and in good shape otherwise at 5' 11" and 185 lbs. Regards, Carl C. pagoo@rocketmail.com


Mark, July 21, 2001 - Hi, I'm just curious. This is the first time I have posted anything here but I have been reading a lot of the messages. I was diagnosed about 2 months ago and am 42 years old. I get the impression that most of the people on this site are around my age. In my teens I did a lot of drugs, from pot to heroin. I'm not proud of it and wish I could change it but I can't. I am wondering if anyone else did this and could this be the cause of our problems? My doctor thinks that it is possible that I have had this for quite awhile and might be because of drugs. marko5706@hotmail.com


Jon's July 21 reply to Mark's July 21, 2001 - Hi Mark, My guess would be that drug use use in the past may have reduced your body's ability to fend off viruses and bacterial infections, and may even have weakened your heart muscle. However, I doubt that it is the primary cause of your cardiomyopathy. Jon.


Tracey C, July 21, 2001 - Hi everyone, Jon, Thanks for the wall movement info. My doctor always writes "abnormal septal wall movement of uncertain significance." I appreciate your response.
     I hope everyone is feeling okay. I think I'm feeling the affects now of being off Coreg and Lanoxin. It's beginning to worry me. I've been extremely tired lately, which is not usual for me. I saw my doc last week and he cut my ACE inhibitor in half. His reason for doing this is that while wearing the event recorder my pulse was always extremely high in the morning. He thinks that because my pressure is so low and lower in the morning, that my heart is trying to compensate. This sounds logical but worries me. I know how important it is to take as high a dose as tolerated of the ACE inhibitor.
     His other point is that in the last year I've lost 100 pounds, completely changed my diet and have been exercising, so my body has regulated my BP on its own and now with the meds, it's too low. So I'll now be on 10mg a day of Zestril. I've also noticed since being off the other meds that the pain in my left armpit has returned fairly severely. He doesn't think it's related but you can't help but wonder. Does anyone else get a similar pain - not really chest, but just near the armpit? The event recorder didn't pick up any dangerous rythyms, but a few PACs. He explained that the general populace gets those and they're nothing to worry about. Thanks for listening. 2tcollins@home.com


Ben B, July 22, 2001 - Hi, Has anybody else here been given an EP Study and not been given an ICD? Sometimes it seems like I'm the only person who experienced this and like for everybody else the EPS was just a formality before implanting the zapper. I seem to be doing pretty well for a person as sick as I'm supposed to be, but sometimes I worry about dropping over unnecessarily from SCD when more could have been done to prevent it.
     I know the EPS is not all that predictive of lack of risk. Sometimes I think the EPS is used to screen for who the insurance will pay for an ICD, not everyone who needs one. I think I asked this once before and didn't really get any replies, leading me to believe I may be the Lone Ranger. bdbrinkman@juno.com


Ben B's July 22 reply to Carl C's July 21, 2001 - Hi, There is a lot of good info right here on this web site on this. Sometimes I think Jon has so much stuff here he forgets and has to search his own web site to find out what he put here! <lol> One good spot is www.chfpatients.com/tx/xcall.htm. bdbrinkman@juno.com


Taavi K's July 22 reply to Carl C's July 21, 2001 - Greetings Carl and welcome to the club! I had a heart transplant 4 years ago. For a start, I recommend reading the write up I did for Jon about going through my transplant at www.chfpatients.com/tx/txstories.htm If, or rather when, you have any specific questions, don't hesitate to ask. Taavi. kubit002@tc.umn.edu


Jack D's July 22 reply to Mark's July 21, 2001 - Hey Mark, I think it's really interesting that America has the highest incidence of drug use of just about any country in the world - prescription drugs - but the illegal ones are the only ones that ever cause any problems. maddjak@hotmail.com


Ginger, July 22, 2001 - Hi, What is a BioZ test? I did look for it under the search engine here, but still don't really know what it is or what it is for. Could someone please explain? Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon's July 22 reply to Ginger's July 22, 2001 - Hi Ginger, BioZ is the brand name of a whole family of heart monitoring systems. I have never been subjected to these and my own CHF doc isn't using them (yet, anyway), so I can only say, go check 'em out! <g> www.cardiodynamics.com/cdprod00.html. Jon.


Jon, July 22, 2001 - Hi everyone, Well, I think I have my Heart Info mailing list back up and ready to go. You can subscribe and unsubscribe yourselves on this one at www.chfpatients.com/lists.htm. To those who subscribed to help me test it, you'll need to subscribe again, I'm sorry to say. Thanks! I will post the day after I send the first mailing out and ask if anyone who subscribed did not get the mailing. That will be after my pooter gets back in shape, though. Jon.


Ginger's July 22 reply to Jon's July 21, 2001 - Uhhhh Jon, Isn't that a fairly new computer that you just fried? We all know you work the poor machine to death, but gee whiz. I hope you get it back sooner then ya think and sorry to hear you fried half of it. Fried things are bad for us anyhow ! <g> Anyhow, good luck with getting it fixed in short order! :-) The posts will be missed, and so will you. Thank you for visiting my daughter's site. She thought that was cool. Hugs and prayers, Ginger.
     PS. Do you need a few donations to get the pooter fixed? I know it can get expensive. angelgin@bellsouth.net


Jon's July 22 reply to Ginger's July 22, 2001 - Hi Ginger, Naw, George W's tax refund now has a purpose at this house. The 500 bucks is gonna hurt but we can afford it this time. It was a RAM chip I swapped from my daughter's pooter to mine to see if it would work on a slower bus so she could have mine and it fried the works. At least it didn't fry hers! Hers is brand spanking new - bought for college next month. My pooter was purchased early last year. I honestly don't know how this happened since the chip had been in both machines once before without this kind of trouble. Go figure.
     I think your daughter's board looks good. The more message boards that exist for people coping with CHF in any way, the better! Jon.


Ginger's July 22 reply to Robert's July 21, 2001 - Hi, This goes to show you the difference in people with EF numbers, Robert. You can do better on a treadmill than I can and my EF is 40 to 45%. I do not push it till I get to the point of being SOB becuase I am afraid to do so due to an arrhythmia under stress. The best I do is 2.6 mph and about 1-1/2 to maybe 2 miles, and that is without any incline on the treadmill on a good day. I never can walk on a treadmill with an incline. I've been told not to. Keep up the good work. You're doing great, it sounds like. :-) It sounds like rehab thinks so too. Good luck. Hugs and prayers, Ginger. angelgin@bellsouth.net


Ginger's July 22 reply to Tracey's July 21, 2001 - Hi Tracy, Awhile back I made a post very similiar to this one. I lost a good deal of weight without trying or keeping track and was very stable with an EF of 56% for over 2 years. The doc thought that because of the weight loss and me being so stable he could reduce all my meds drastically. Well, he did. Six months later we found out it was not the thing to do. Make sure he keeps you on a decent dose of ACE inhibitor.
     As I lost ground with my EF down to 40 to 45%, all my meds were raised back up to the levels they used to be in the hopes that my numbers will come back up. As for the armpit pain, yup, I have had it since the beginning and it also comes up my chest a little ways. I was told it may be arthritis or costrocondritis, which is an inflammation of the cartilage. To this day I still have it off and on.
     As for the Lanoxin and tiredness, Lee Roush was taken off her Lanoxin recently and experienced an increase in her fatigue and got her doc to put her back on it and she feels better now that she is back on it. Talk to your doc. It's worth a shot. They do not know our bodies and how they feel like we do and have an idea of what causes it.
     I hope this was of some help. I postponed my Vo2max test to the 30th since I just felt tired and not up to it this week. Not a good move, but I did it anyhow. The last 2 weeks I have been having wrist problems, which they think may be carpel tunnel syndrome. Grrrr. What a thing for me to get. I don't know which I am actually hoping for it to turn out to be - carpel tunnel or arthritis. I don't know which is the better of the 2 evils, but we will soon know. Stay well y'all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Jon, July 24, 2001 - Hi guys, I'm back but may not get to posts until late tonight or tomorrow afternoon. It wasn't my RAM at all - the old motherboard fried the RAM, not vice versa. Jon.


Stephanie's July 24 reply to Tracey's July 21, 2001 - Hi,You asked about arm pit pain. I don't have pain, but when I'm not feeling well my arm pits burn like I rubbed Bengay on them. If I do not rest, it circles around to my chest. My doctor said that it is not related to my heart at all. I know that it is. I use it as my measurement of how much I can and cannot do. Like Ginger said, we are the ones who know our bodies. Prayers, Stephanie. moodystephanie@hotmail.com


Ginger's July 24 reply to Ben B's July 22, 2001 - Hiya, I had an EP study because on a treadmill on an incline I have an arrhythmia. I did not end up with an ICD. I also could not have my PVCs burned because they are multifocal, which means they come from too many different places at once. So my EP study just gave me peace of mind that my PVCs are harmless at this point and so is my bradycardia. I do not have the PVCs like I used to, though, just once in awhile. So Ben, try to have peace of mind that you don't need one at this point. It's a better way of looking at it, I think. I may need a pacemaker down the road if I start having symptoms from the bradycardia but so far I don't. Don't feel alone; You're not the only one that had an EP study and walked out with no ICD. :-) Hugs and prayers, Ginger. angelgin@bellsouth.net


Thelma's July 24 reply to Ben B's July 22, 2001 - Dear Ben, You are not a lone star, my friend. About a year ago I had an EPS and was not implanted with an ICD. I think they over-medicated me and I was out like a light so who knows what went on in there, but my doc told me I didn't have any worrisome arrhythmias. By the way, did they keep you on your beta-blocker during the test? They kept me on my beta-blocker because "that was my baseline" and I was always under the impression that one needed to be off their med for the EPS. Oh well, I'm not complaining. Good news is good news, Thelma. Tcull@prodigy.net


Gwen Sander's July 24 reply to Ginger's July 22, 2001 - Watch out, The doctors thought that I had carpal tunnel in both hands. They did the surgery on my right hand and things did not change much but during this time I lost 30 pounds and the carpal tunnel was no longer in my left hand. The moral of my story is just because they say it is carpal tunnel doesn't necessarily mean it is. I wish I had never had it done. I sometimes get the pain in my left hand when I retain extra fluid. Try to track it and see if it is worse when you are retaining fluid. Gwenddot@aol.com


Autumn's July 24 reply to Jack D's July 22, 2001 - Hi Jack, A person sure hopes that the meds they're prescribed won't damage the heart but it is surprising how many might do just that. I think I got my heart damage from several factors, with two being most to blame. First, I went through a bout of anorexia which did slight damage to all my organs. I think that this damage made me especially susceptible to damage from meds, although anyone can have negative effects depending on the drug and the dose.
     My malnutrition brought on depression. They put me on the maximum dose of a tricyclic antidepressant called Aventl. After a few months I began to have a lot of missed beats, then I landed in the hospital with my heart so irregular and missing that they couldn't take a blood pressure reading. I can never take tricyclic antidepressants again but going off them didn't eliminate the damage they did to my heart. The damage has continued to progress.
     One thing I learned back then is to take responsibility for my health; to know about what I'm taking, it's risks and side effects, and to realize that a doctor may not always be right. It's my body and I must be the one most invested in taking care of it. Sometimes that's not easy to do when you have to be assertive with medical personel. AmberDawn-Blzn@webtv.net


Dana Goff, July 24, 2001 - Hello, I'm a 53 year old American male on work assignment in London for the past 6 years. I was diagnosed with congestive heart failure this last April. Previously, I had a myocardial infarction and quintuple bypass surgery in 1986. I started to have problems with fluid building up in my right leg in December, 2000. In March I was in an accident at the office fracturing my upper right (dominant) arm in 3 places and leaving me with minor nerve damage in my right shoulder. I mention the arm because it does affect my medications and my mobility but of course it isn't life threatening.
     I was hospitalised this April with severe fluid retention; it had filled up my legs and into my abdomen, and was painful for me to stand. I had a loss of equilibrium. In the hospital they put me on furosemide IV and reduced my weight by 23 pounds in 8 days. My medications now are 75mg enteric coated aspirin, atenolol, codeine sulphate, 240mg furosemide divided into 2 doses, Gaviscon, isosorbide mononitrate, lansoprazole, Lipitor, nitroglycerin, perindopril tert-butylamine, rantidine and spironolactone. Sometimes drug names in England are different than the US.
     I have not worked in my normal office environment since I was diagnosed with CHF. I manage to do company work 15 to 20 hours a week on my PC at home. I have very little energy and stamina, tiring very quickly. My diuretic regime is 2 doses daily that last 5 to 6 hours each. During these sessions I urinate a relatively small volume 5 to 6 times per hour. All told I have to allow 10 to 12 hours a day for the diuretics regime. I cannot go anywhere or plan to do anything during this time. It's a huge chunk of time on a daily basis to work around.
     This diuretics regime is really starting to take a toll on me. I am increasingly despondent. Are people on this kind of regime for the rest of their life? My regime seems to be so much more time consuming than what others have mentioned on the message board. I fight nausea a lot. Strangely, the foods that stay on my stomach best are the higher sodium ones but that's in direct conflict with my sodium restricted diet. Has anyone found any of the herbal medicines to be of benefit?
     I want to thank you for the very comprehensive site, Jon. I've picked up a lot of good tips from it. Cheers, Email@Goff.com


Wanda S' July 24 reply to Ginger's July 22, 2001 - Hi, A BioZ test is used to measure the heart's pumping ability and fluid status in the heart and lungs. It can detect fluid changes to see if your doctor needs to initiate or adjust your medicines. The test can determine need and optimize pacemaker programming. Adhesive skin electrodes are applied to the neck and ribs. The test is painless and takes about 15 minutes. That is all I found out, but I will be asking some questions when I see the doctor. mom6@bright.net


Autumn's July 24 reply to Ginger's July 22, 2001 - Hi Jack and Ginger, I think you're both doing great on your exercise. I have, or at least had, a normal EF. Before I developed myositis from Lipitor and before my hospitalization with SVT, I was doing 3.6 mph, 2.75 to 3 miles per time, 5 days per week. Over the last 6 weeks I have worked myself up to 3.2 mph, 1.75 miles per time, 1 to 3 times per week.
     My muscles are just getting back to normal from the myositis. I am concerned whether the myositis also damages heart muscle. My doctors have told me that I cannot ever again take any lipid control drugs. Most can cause myositis and that can throw me into kidney and liver failure. The cholesterol binding agents cause constipation so I can't take them because my peripheral neuropathy already causes severe constipation and has landed me in the hospital.
     My cardiologist recently told me he wants me to forget I ever had CHF, and forget about the SVT and the risk for SD because I am now well controlled with Calan. He doesn't like my questions and says I am becoming a "cardiac cripple." He wants me to "just get on with life and stay off sites like this." He also said he will do my echo again this November but then will not do it every year. This deeply concerns me. Is it reasonable to go back to every other year echos if I am stable? I don't know what other cardiologist I could go to since this one is considered the best in the city in our plan.
     I did get back on the web (shame on me <g>) to learn what I could to manage my cholesterol levels naturally. I have started to take the natural form of pantothenic acid called Pantethine. I also doubled my Q10 to 150 mg daily, started garlic, B-12, B-6, calcium and magnesium, and bee pollen. I realize that with my organ damage I will have to be cautious and aware even taking vitamins since my organs do not filter out things at a normal rate. I have drastically cut my carbohydrates and eat lots of fruits and veggies. I eat breakfast as my largest meal, a moderate lunch, and mostly fruits, veggies and a glass of milk for supper. I do eat a little peanut butter daily. I do not diet but have lost 3 lbs in 10 days.
     I feel genetics, my mistakes, and doctors mistakes helped me get to the state of health I am in today. I also feel frustrated at all the health problems and the seeming dead end to treatment. I just can't accept that. I truly believe that although I can't eliminate the past damage, I can change the quality of the future, partly through being an informed consumer of what is appropriate medical care and by taking the responsibility for my own health in diet, exercise, etc. This is so hard to achieve with all the temptations, but it is up to me because no on is going to do it for me, Autumn. AmberDawn-Blzn@webtv.net


Jon's July 24 reply to Autumn's July 24, 2001 - Hi Autumn, It is common to reduce the frequency of echos in stable CHF patients. I no longer have one each year as a matter of course, although my doc runs me through a Vo2max test yearly, if he can nail me down - I hate those tests! ;-) Jon.


Mark, July 24, 2001 - Hello everyone, It's late here in Philly - 2:17AM. Since I couldn't get to sleep I figured I would just check the site out tonight. What I was wondering is if anyone has heard any more about the artificial heart that was implanted into the man at Jewish Hospital a few weeks ago. I have been searching but haven't seen anything about it that is recent. mat2205@aol.com


Sammy L's July 24 reply to Tracey's July 21, 2001 - Hi, I saw your question about arm pit pain. I get this too. Mostly the pain is pricking, and short lived. After each angioplasty and stent placement I experience this for several weeks. The doc claims it is the stents healing. Depending on which stent was irritated depends on where the pain is located generally. I do have a stent under the left clavical, which is close to the arm pit. I don't know if you have any stents but that is my experience. Sammy. SammyL@home.com


Diane, July 24, 2001 - Hi, Thank you for this place to get info about CHF and other problems. It has helped late at night when I get anxious. I have cardiomyopathy. Why? They didn't know. I was intubated with pulmonary edema twice over the last 5 years. My blood pressure is low that Coreg use is questioned. I have agoraphobia and anxiety attacks. I feel old and useless at 46. I am a diabetic, 100 lbs over weight, and I smoke: a death wish or what? I did physical work for 15 years. I am concerned that my long term disability insurance is going to deny my claim. I am not in the Social Security system. It is a county retirement and I have been advised by my physican that type of work is out so I feel like I am in limbo. Has anyone dealt with long term disability or county retirement disability? I am from Massachussetts. Thanks. Dh3044@aol.com


Ken, July 24, 2001 - Hi everyone, I have had DCM with CHF now for 7 years. I had an EF of 40% for 6 years and the last test was a MUGA, which showed a 16% EF. I'm now on Coreg, which has helped me with my PVCs but I have had some side effects although not many. It's been one week since I started a dose of 3.125 Coreg twice a day. Has anyone had a swollen prostate form Coreg? It seems it started after 2 days of taking it. seadog1977@home.com


Lee R's July 24 reply to Ben B's July 22, 2001 - Hi Ben, I understand your concern about no ICD after an EP Study. You can read about the ACC/AHA Guidelines for Implantation of ICDs at: http://www.americanheart.org/presenter.jhtml?identifier=3005414. What were the results of the EP Stdy? Take care, Lee R. LeejRoush@msn.com


Wendy B, July 24, 2001 - Hi, I don't know about drug use. My drug use was a loooong time ago and not much at that. I do know that when I was diagnosed, all the doctors at the hospital and then my CHF doctor told me that I could never drink again. Evidently that was what caused my CHF. I was never even described as an alcoholic, just a good heavy bar drinker! So maybe previous habits do have something to do with it. No, of course I don't drink any more. I really don't think hospitals and prospect of imminent death are worth it! boozws@hotmail.com


Jon's July 24 reply to Wendy B's July 24, 2001 - Hi Wendy, Drinking is a definite cause of cardiomyopathy, and alcohol is a cardio-toxin according to the Merck Manual. However, my reply to Mark was based on his statement that his drug use ranged from pot to heroin, so I did not include alcohol. In America, most people do not speak of alcohol as a drug - although it obviously is - simply because alcohol is legal and they are usually referring to illegal drugs.
     In my opinion, some illegal drugs can cause heart problems, especially speed and especially very strong speed like crank, also known as crystal or meth. Any illegal drug and many legal ones - in large amounts over a long period of time - can probably cause heart problems. However, I was limiting my reply to what I think Mark meant - recreational use only and only over the short or medium-term. Booze can kill you, there's no doubt at all. Jon.


Lee R's July 24 reply to Tracey's July 21, 2001 - Hi Tracey, I can add only a little to Ginger's reply to you, but I was taken off Lanoxin and felt the change. When I questioned a second doctor, his reply to me was why would a doctor change a stable heart patient's drug regimen? The more you think about it, that is probably true. I had to go back on it but at a slightly lower dose. I hope this helps.
     A question for the folks on the board. Is anyone on Aldactone? My second-opinion physician suggested it for me. I've read the RALES Info here at Jon's but am interested in any personal experiences. I'm always lurking somewhere but it is good to post after a little while. Take care, you all, Lee. LeeJRoush@msn.com


Ernest D's July 25 reply to Ben B's July 22, 2001 - Hi all, Ben, I had an EPS done and the doctor said I did not need an ICD, but that if I had any more problems he would give me one. I still don't know what to make of that, Ernest D. xerez@worldnet.att.net


Carl C, July 25, 2001 - Hi, I am 49 and currently heart transplant status two, 11 months and waiting. When I get the call or the page, can I ask how old is the donor and the sex of the donor? Obviously, I might feel more graced with a young heart from a male athelete. Actually, I'd be blessed to get a donor heart that beats regular and strong, isn't diseased and will last 20 or 30 years and is an exact or at least a close match.
     Just what questions are appropriate and should I ask? Actually, my wife will likely have to ask since I'll be busy taking an extra dose of Xanax. I'm pretty much prepared in my mind that I'm on a real adventure again, not too much unlike the iditarod, the Tour de France, or the recent doctors' experiences at the South Pole. As much as I've already endured and survived and many of you before me as well, is well beyond any of chewing gum made for TV survivor shows. I appreciate the 2 previous replies, which were informative, but didn't answer all my questions. Regards and prayers, Carl C. pagoo@rocketmail.com


Mary, July 25, 2001 - Hi, My doctor just put me on Coreg and I am now experiencing shortness of breath. Is this a normal response when you first start the drug? I am on 3.125mg twice a day. shiloh529@aol.com


Jesse B, July 25, 2001 - Hi, To Sharon J W on her sweet pickles recipe. How long do the cucumbers have to sit in the vinegar until they are ready? jbecker@delex.com


Jon, July 25, 2001 - Hi everyone, Would anyone who received a mailing from my Heart Info List yesterday please e-mail me and let me know. I just want to be sure it's working. Thanks, Jon.


Jon, July 26, 2001 - Hi everyone, Thanks to all who e-mailed me confirming that they received a mailing. More on the way very soon. It's good to have a list functioning again since there is only a limited amount of room for info on my web pages and I run across so much.
     The following pages on my site have been updated:

  1. Jon's Bio
  2. WWW Heart Links
  3. Jon's Random Thoughts
  4. Jon's Random Thoughts, page 2

Jon.


Joshua, July 26, 2001 - Hi, I could list all the meds I'm on but they are just about all the ones you all are on and maybe more. That's not the purpose of this love note. Of all the research I have done into my condition, two things other than the Bible have inspired me to toss out depression, give me a sense of security, and the feeling that I am actually helping the doctors who treat me. The two things are books! The first is a tome written by a Mr. Michael Murphy (I think his first name is correct) entitled "The Power of Your Sub-Conscious Mind" and the second book is by Jose Silva and Robert B. Stone, entitled "You The Healer."
     Neither book advocates dumping your doctor. On the contrary, they spell out how you can get better using their help. Both books have a Christian base. These are not books to be scanned or flipped through. They require study and practice. Since most of us have extra time now, believe me, this is well worth your time.
     My EF is 19% and has been for 5 years. With the help of my docs, meds, and these books, I lead a near normal life. I urge all who communicate with this site to give it a try. I don't want to become totally persona non gratis on this site so I will not mention the other crazy, radical and irrational things I do to keep Pan in the forest. Let's just say they work for me. There is nothing crazy or irrational about the books I have recommended to you. Be of good cheer! jatilton@tilda.ws


Bill D's July 26 reply to Dana Goff's July 24, 2001 - Hi Dana, You're taking 3 medicines to relieve your heart burn or reflux disease. I think the lansoprazole would be enough. I remember people taking up to 300mg of furosemide all at once. There are other diuretics that may help you. I know what you mean when you say you can't go anywhere or plan to do anything during this time and that it is a huge chunk of time on a daily basis to work around. I know it. It will be at least 2 hours before the furosemide kicks in.
     I'm worried about you. Are they taking Social Security out of your pay? If they aren't, you'll never get on Medicare. You'll never come back. Bill D. billdog11@earthlink.net


Doug Toovey, July 26, 2001 - Hi All, I'm new to this site and very thankful for the info received here. I'm a 45 year old male diagnosed with dilated cardiomyopathy. I've been on Coreg and ACE inhibitors for over a year with good results. My EF went from 44 to 49%. During the past week I have noticed persistant edema in my ankles (not bad but definitely there) and some mild chest congestion. My doc is away on vacation and I'm due to leave for 10 days on a houseboat before he returns. What problems can result from persistent edema and should I get to the ER before leaving town? What would you advise? dtoovey@wilseybennett.com


Anthony P, July 26, 2001 - Hello everyone, I haven't posted for awhile but I read the posts every day. Jon, I hope you are doing well. I would like to ask anyone if they get a lot of gas and belching, also a constant dull ache above the stomach? I think my condition is getting worse. I am having pain on both sides of my neck and lately I need pillows under my head to sleep, but the gas makes sleep impossible. I need to know if it's part of the CHF or the meds, or maybe something else. Thank you much, Tony P. tonyparis@compuserve.com


Katherine's July 26 reply to Mary's July 25, 2001 - Hi Mary, The same thing happened to me. I do have asthma but the heart failure specialist said it was important we try Coreg since the results are usually so good. After about 2 weeks my SOB went away and I haven't had problems with it since, except for being very, very tired. I'm now up to 6.25mg morning and evening. kholian@metropo.mccneb.edu


Dorothy's July 26 reply to Autumn's July 24, 2001 - Hello Autumn, I just want to tell you that my internist had me on Calan to help ease chronic headache pain. I was diagnosed with CHF in April. The cardiologist and internist coordinated my meds. The cardio doc insisted that Calan absolutely had to be discontinued. This info is for what it is worth.
     I'm very impressed with your determination to be proactive. I can tell you that docs are not as know-all and be-all as they would like us to think. I'm an example of one who believed the doc and paid for it. I have had chronic headaches (trigeminal neuralgia) since the early 1990s. A neurologist assured me he could relieve my pain. I had brain surgery, had a stroke, and still had the head pain. I finally had to take early retirement from a job I loved. The positive thing that did result from the stroke is that I spent hours exercising to overcome the limp and other effects of the stroke. I have since decided God had a larger plan for me. The fact that I was in very good physical shape was a blessing when I had CHF. I have had time with my family and time to do Bible study, which has resulted in an inner peace. Best wishes for good days, Dorothy. DPowell806@aol.com


Marty's July 26 reply to Diane's July 24, 2001 - Hello Diane, I have had DCM and unconvertable a-fib for 4 years now. I was a police sergeant when diagnosed and I retired on full disability in 1998. The state retirement system in Virginia gave me no trouble at all. My doctor made it clear that I would not be cleared to return to my job, which was as a field patrol supervisor, a pretty "anything can and will happen" type of occupation. I believe you wrote that your doctor told you that you could no longer do your work due to your condition. Be sure have the doctor reduce this to writing and send it to your disability board. Good luck with everything! MartinBK@aol.com


John Len, July 26, 2001 - Hi, Some months ago I read in a journal an article stating that cinnamon was good for neuropathy. Since then I have been putting a dash of it in my morning coffee and it seems to be helping. A side effect(?) is that since then the edema in my leg has disappeared, although it has resurfaced in the last few days but not as bad as previously. a_lenny6@hotmail.com


Cristina L, July 26, 2001 - Hi, I must say I totally agree with Amber's recent post. I also feel frustrated at why or how I developed peripartum cardiomyopathy and CHF. Even though I have a great cardiologist, I trust no doctor. One almost killed me releasing me from the hospital with so-called pneumonia. I also think doctors in general do not know enough about CHF. There are still so many clinical trials and it's all a guessing game. I also think doctors' mistakes helped me get to the state of health I am in today. My doctor also says that I should stop reading everything from the Internet. I want to know all I can so I can ask the right questions. Is that so wrong? They don't feel the panic that I do when I have a run of PVCs and feel like I may pass out. Mainly I live with the fear that I will end up like when I was first diagnosed.
     It's weird how some of you have complained of a weird feeling under your arm pits. I also feel it from time to time but never connected it to my heart problems. I'll have to pay closer attention next time when I feel it. At least I know I'm not crazy.
     By the way, is anyone on Cordorone? I'm on 300 mg a day for my extra PVCs but I'm afraid of potential side effects. Cristina. rjlisa@bellatlantic.net


Jon's July 26 reply to Cristina L's July 26, 2001 - Hi everyone, I could say a lot about why you should be careful about inaccurate information found all over the web. I could also go on about the fact that a lot of web information is very good information indeed. However, I will sum up my thoughts in one sentence: One of the primary reasons I fired my last general care doctor was his belief that the Internet contained no useful health care information.
     Print out a few pages from my site and ask him what exactly is wrong with the info. If he finds something inaccurate, you've done me a service because I can then correct it. If he does not, maybe he will quit bringing it up at your appointments. Be sure there is plenty of paper in the printer. One of my web pages averages 10 printed pages. Jon.


Janet, July 27, 2001 - Hi, I recently heard a report that the drug Sporanox (itraconazole) was linked to CHF. I took that drug in 1998 and developed CHF during my pregnancy that same year. I'm really curious if my DCM of unknown cause is related to that drug. I saw on the FDA site that out of 94 cases, 58 have been linked. Does anyone have any more information or is anyone else out there with DCM who took this drug? janetca1@email.msn.com


Ann C, July 27, 2001 - Hi, I am just letting the group know that I received my new heart on May 15th. I am still in the hospital for complications, but my heart is perfect. It was my kidneys and other things. If there are people out there that have questions about my experience, please feel free to write. souperxdouper@yahoo.com


Jeanette W's July 27 reply to Mary's July 25, 2001 - Hi Mary, I am taking 12.5mg of Coreg twice a day and have been for sometime now (over 3 years). SOB does occur when you are first taking it but will subside after your system gets used to the drug. I noticed that when my dose was increased I had a hard time with shortness of breath, but after a couple of weeks I didn't notice it much unless I was doing strenuous activity. If you still notice the shortness of breath after a few weeks, talk to your doc and see what he says. Take care and God bless, Jeanette. jeanette841@yahoo.com


Jeanette W's July 27 reply to Ben B's July 22, 2001 - Dear Ben, I recently had an ICD implanted but had no EP study done. I have never had an EP study done, just a heart cath back over 3 years ago. I hope all goes well with you and God bless, Jeanette. jeanette841@yahoo.com


Jon, July 28, 2001 - Hi everyone, I've had a rough week. Hopefully, I am getting back up to speed but I will be playing catchup for awhile, I am sure. Jon.


Jon, July 31, 2001 - Hi everyone, Sorry about the further delay. My pooter, my health, and my ftp server have been a mess this past week. The server is okay now and I'm working on both the others, and hope not to be offline anymore, at least for awhile. Jon.


Vicki Herbert's July 31 reply to Monica's July 16, 2001 - Dear Monica, This is the first time I have read this site. I have CHF and am inactive on a transplant list; as long as I keep passing the test! My first doctor was Daniel Yip. He is wonderful: very caring, and he listens. All my prayers, Vicki. adesignbyMarschell@msn.com


Jim, July 31, 2001 - Hi, What kind of alternatives are there for someone whose heart has 40% scarring due to a heart attack brought on due to CHF. Thank you. telemag@home.com


Anita C's July 31 reply to Carl C's July 25, 2001 - Dear Carl, I just read your post regarding questions you can ask about your donor. I had my heart transplant in April of 2000. If your experience is like mine, you will be told very little about your donor. You can ask any question you like but will probably be told very little. I was told that my donor was a 26 year old female, and that's it. The privacy of the donor family is a very sensitive area and I can fully understand that. Unless they want to have contact with the recipient, it will not happen. I have written a note to my donor family but have had no response. I am just silently grateful and say a prayer each and every day for my donor and her family.
     By the way, I love your attitude of being on a great adventure. That's how I approached my transplant also. It really does help. I'm doing well. My new heart is functioning wonderfully. The meds cause some unpleasant side effects sometimes, but nothing compared to the suffering I had from CHF for 9 years prior to my transplant. Best wishes to you! abcox@triad.rr.com


Joe S' July 31 reply to Anthony's July 26, 2001 - Hi, Over the years I have found that gas, belching and weird pains are caused by a reaction to something I have eaten. Two weeks ago my wife bought a herbal salt and I felt like I was going to die. I read the label and it contained onion, leeks and chives, which I am very allergic to. When I eat out I ask for no seasoning on anything. Six weeks ago I had to spend a week at the Mirage Hotel in Las Vegas. Before I went, I called the head chef and told him my diet. Every restaurant had my name and prepared the food especially for me. One more thing for everyone. There is a great article in the August Reader's Digest on tachycardia called "Doctors fried my heart." Read it, Joe S. jes@gbis.com


Dorothy, July 31, 2001 - Hi Friends, I have a question regarding systolic blood pressure. Lately mine has been running 40. Is this toooooo low? I have not found an answer to my question. I'm hoping one of you all can help me. Best wishes, Dorothy. DPowell806@aol.com


Ben B's July 31 reply to Christina L's July 26, 2001 - Hi, First of all, so I am not misunderstood, I believe there is a lot of good information on the Internet, particularly on this site. It was here that I found out a lot of things to run by my doctors. That being said, I think what most doctors are afraid of is that people will become obsessed and panicked by what they read on the Internet. I know this is a possibility because this is what I did when first diagnosed. I spent hours every day scanning everything on the web, reading and re-reading everything. I paralyzed myself with fear until I snapped out of it. I know it is not true about this site but one thing I know is incorrect on the web, and appears on probably 99% of the web sites of CHF and DCM is the ridiculous 5-year survival statistic. I see no way to support this and it is put down as the absolute truth on all sorts of supposedly authentic medical sites. bdbrinkman@juno.com


Jack D's July 31 reply to Christina L's July 26, 2001 - Hey Cristina, About Internet information, there's one rule of thumb I apply: "If they are selling something then their information is tainted." They are there for one reason - to make a profit. Jack. maddjak@hotmail.com     

Jeanette's July 31 reply to Doug T's July 26, 2001 - Dear Doug, I have DCM and if you are having swelling of the ankles and having a hard time breathing, don't hesitate; get to the ER to make sure you are not going back into CHF. Since your doc is out of town and you will be out of reach on a house boat, if I were in your shoes I would check and make sure rather than take a risk and have something happen. The worst thing that could happen by going to the ER is that they up your Lasix - if you are taking a diuretic - unless you are in CHF. In that case, you are in good hands as well, so either way you are covering yourself. I hope all goes well for you. Take care and God bless, Jeanette. jeanette841@yahoo.com


Abdul Rasheed, July 31, 2001 - Hi, I am Abdul Rasheed, a student from india. I want to make a web site for poor heart patients, illustrating world-wide help for them. Please send addresses of such authorities, Abdul. manzilizzath@hotmail.com


Ginger, July 31, 2001 - Hi y'all, I'm mainly just checking in. I have a cardio doc appointment today to set up the Vo2max test. I kept putting it off. I'm not sure why, except maybe I'm afraid of the results. Stupid, huh? But I am not putting it off any longer. About printing a page off here - <lol> - I have printed The Manual a couple of times for people and it's not a page, it's a book! Once I went to print something else and ran out of paper in the printer. <g>
     Jon, thanks for the Healthology Newsletter. I have learned some things from it that I never had even thought about. It even goes into supplements, which is one area we all wonder about because we never really know which ones really are recommended to help and which are just bull. Jon, did you ever find a new PCP? If so, how? I haven't. Actually, I have about stopped looking. I got frustrated with it.
     Watch the heat, folks. It will get ya. We were out in the yard doing yard work yesterday and after about 3 hours I started not feeling so good. Then I got lightheaded and had to come in. So be careful, y'all. On a bright note, I got 5 new baby kittens and my lovebirds have 3 eggs. I guess spring was late in my house. Anyone want a kitten?! Stay well, y'all. Hugs and prayers, Ginger. PS. What does magnesium do? angelgin@bellsouth.net
 
Jon's note: See the minerals page for lots of magnesium info


Jon's July 31 reply to Ginger's July 31, 2001 - Hi Ginger, I did find a good PCP. However, I am still looking because my CHF doc moved, changing affiliations and now I need a doc on staff at a different hospital! Just fine and dandy, huh?! Funny thing is this doc turns out to be a neighbor (right across the street) of my CHF doc! Go figure.
     This PCP has agreed to treat me until I find a doc on staff at all the right places and he is giving me the skinny on the docs I am considering before I interview each one. How did I find him? Many, many months of looking, making phone calls, going to appointments where I bluntly told the doc that I was looking for a new doctor who would not be treating my heart failure but rather the rest of me. I state my concerns and requirements and invite discussion. Finally, I found a good one. Eventually, I plan on finding a good one in the right location. <g> The trick is to never give up. The relief when you realize you've found a real doctor is worth the effort; And I can now say with certainty that the more docs you interview, the easier it gets. Jon.


Christy W's July 31 reply to Mark's July 24, 2001 - Hiya Mark and all, I just saw a news article about the artificial heart recipient. "Louisville Surgeons Say Artificial Heart Patient Still Doing Well. News Briefing Planned for August 1, 2 p.m. (EDT) The University of Louisville surgeons who implanted the first AbioCor Implantable Replacement Heart in a diabetic man in his 50s at Jewish Hospital, July 2, announced today that the patient continues to recover ahead of expectations. [PR Newswire]" breezip@hotmail.com


Stephanie's July 31 reply to Mary's July 25, 2001 - Hi, I am currently taking 37.5mg Coreg twice a day. I started at 3.25mg twice a day and have slowly stepped up to where I am now. Every time I had an increase in dose, my CHF symptoms seemed to reappear, worse than before: Shortness of breath, extreme fatigue, etc,... Every time I felt like it was not worth it and wanted to give up. It was really pretty bad.
     My symptoms would slowly improve so that after about 2 weeks I was feeling better than before the increase. It is a hard tough road but certainly worth it. Just hang in there. My EF has gone from 15% to 35% in 7 months. I am ready for another increase. I seem to be somewhat resistant to medication. The increases now are a little easier because I know that the symptoms are temporary. Best of luck, Stephanie. moodystephanie@hotmail.com


Bill B, July 31, 2001 - Dear Folks, Thank you all for your advice about talking to my 17 year old about my illness. I told her that some people live a long time and some people don't, but it is all in God's plan. She responded with "Doh! You've been in the hospital 11 times in 2 years and had open heart surgery. Did you think I didn't know it was serious?" - typical 17 year old, huh?
     She is not totally happy about my illness but she is a totally awesome kid, uh, young lady, with a strong faith in God. She starts law school in January. I am very proud of her. Once again I thank you Jon, for this site, and once again thank you all for your help. God bless, Bill B. fedx44@yahoo.com


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

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