The paperwork never ends The Archives
March 1-15, 2005 Archive Index CHFpatients.com

Jon 3-3     here we go again
 
Jon 3-3     "welcome back" posts
 
James 3-3     Medtronic implanted device alert!
 
Mimi H 3-3     seek valve repair experiences
 
Norma W 3-3     does anyone have conjunctivitis experience?
 
Susan B 3-3     food program for those in financial need
 
Jon 3-3     how to donate
 
Peter S 3-4     this is a unique web site
 
Vicki J's 3-4 reply to James' 3-3     Medtronic ICD/pacemaker recall information
 
Liza K 3-4     value the site, patient advocacy & more
 
Gatha E 3-4     update - oxygen has really helped me
 
Larry T's 3-4 reply to James' 3-3     Medtronic's implanted device recall
 
Allan A 3-5     glad to still be here, donating
 
Susan B 3-5     got a letter about my ICD
 
Jon 3-6     oops!
 
Jon 3-7     dogs and donations
 
Fred B 3-7     seek inappropriate ICD shock experiences
 
Will S' 3-7 reply to Gatha E's 3-4     will oxygen help all CHFers' ejection fractions?
 
Evelyn G 3-7     update on disability and doctors
 
Evelyn G 3-7     to Jon about Atkins results
 
Jon's 3-7 reply to Evelyn G's 3-7     update on Atkins
 
James' 3-7     press release from Medtronic about ICD battery alert
 
Tom S 3-7     update, living with CHF
 
Dave Townley 3-8     Inspra questions
 
Bobby 3-8     does anyone take hytrin or cardura?
 
El R 3-8     heart hurting, regaining energy questions
 
Larry T's 3-8 reply to Fred B's 3-7     inappropriate ICD shocks
 
Joe S 3-8     seek implanted device experiences
 
Valerie R's 3-8 reply to Tom S' 3-7     EF isn't everything
 
Michelle D 3-8     update, meningitis, travel, and more
 
Jon B 3-8     can I cut Coreg in half?
 
Jon's 3-8 reply to Jon B's 3-8     cutting Coreg in half
 
Jacky's 3-9 reply to Jon B's 3-8     cutting Coreg in half
 
El R's 3-9 reply to Jon's 3-8     update, heading for UCLA soon
 
Catherine 3-9     CoQ10 helped me tremendously
 
Keith L's 3-9 reply to Jon B's 3-8     Coreg comes in scored tablets too
 
Joe S' 3-9 reply to Jon's 3-8     it's just to be an ICD
 
Madeline D's 3-9 reply to Jon B's 3-8     cutting Coreg in half
 
Cary Deen 3-9     glad the message board is back
 
Athena B 3-9     glad the message board is back
 
El R's 3-10 reply to Jon B's 3-8     cutting pills in half
 
Anita S 3-10     forum information really helps
 
Jon's 3-10 reply to Anita S' 3-10     great readers, donations
 
Stephanie's 3-10 reply to Joe S' 3-9     ICD and heart function
 
Tom S 3-10     biventricular pacers and Medicare
 
Tom S' 3-10 reply to Jon B's 3-8     cutting pills in half
 
Vicki J's 3-10 reply to James' 3-3     Medtronic ICD recall
 
Tom Campbell 3-10     can't tolerate Coreg - any ideas?
 
Mary Anne M's 3-11 reply to Tom Campbell's 3-10     Coreg is not for everyone
 
Marilu M 3-11     it isn't always the heart - anemia experience
 
El R 3-11     seek liver problem experiences
 
Giorg 3-11     seek advice on supplements
 
Lisa K's 3-11 reply to Tom Campbell's 3-10     my Coreg experience
 
Margaret D's 3-12 reply to El R's 3-11     ascites and edema in the liver
 
Michelle D 3-12     terrible cough, right chest feeling
 
John Rice's 3-12 reply to Fred's 3-7     inappropriate ICD shocks experience
 
John Rice 3-12     any news on amiodarone lawsuit
 
John Rice 3-12     thanks for the web site
 
Stephanie's 3-12 reply to Lisa K's 3-11     Coreg experience, in device trial
 
James S 3-12     seek Celecade experiences
 
Sandy N's 3-12 reply to Joe S' 3-8     device implant experience
 
Sandy N's 3-12 reply to Giorg's 3-11     CoQ10 and device implant experiences
 
Sandy N's 3-12 reply to Fred B's 3-7     ICD may need settings changed
 
Jon 3-13     basic online donation system up
 
El R's 3-13 reply to Margaret D's 3-12     lab tests, information & more
 
Jon's 3-13 reply to El R's 3-13     make sure you are in synch with your doctor
 
Mary Anne M 3-13     trial published on 3-lead pacemakers
 
El R's 3-13 reply to Fred B's 3-7     inappropriate ICD shocks experience
 
Sandy N's 3-13 reply to Jon's 3-12     ICDs and pacemakers
 
Jon's 3-13 reply to Sandy N's 3-13     ICDs versus pacemakers versus ICD/pacemakers
 
Christine N 3-14     seek BiV pacemaker experiences with clicking in chest
 
Michelle D's 3-14 reply to Jon's 3-11     would these drugs cause the cough?
 
Jon's 3-14 reply to Michelle D's 3-14     a drug challenge will tell you
 
Chris J 3-14     what are Ryan's options?
 
Jon's 3-14 reply to Chris J's 3-14     some possibilities
 
Valerie R's 3-15 reply to Vicki's 3-10     Medtronic recall question
 
Valerie R's 3-15 reply to Tom's 3-10     doing well on Toprol-XL instead of Coreg
 
Chris L 3-15     seek CHF doc in New York City
 
Dale E 3-15     seek ideas on depression and insomnia
 
Susan L's 3-15 reply to Dave Townley's 3-8     also questions on feeling in ears, and too much water
 
Margaret D's 3-15 reply to Dale E's 3-15     amiodarone experience & what helped me
 
Jon 3-15     sodium experience
 


Jon, March 3, 2005 - Hi everyone. For the moment, The Beat Goes On is back. Last night after talking with our accountant, we set up CHFpatients.com, Inc., so that a percentage of all donations go to pay me while the rest pays for all other site expenses. If enough donations come in on a steady basis, I think I can keep this forum and the site current and operating.
     If everyone who reads the site regularly sent in at least five dollars a month, I could do this full-time. That would pay me less than Social Security Disability did, but I could get by. For now, I am still looking for a local job. Please note that I now have to buy my health insurance and pay the government its share of my wage - ouch!
     I rewrote this forum page from scratch so if I left off a feature you miss, let me know and I'll write it back in. Jon.


Jon, March 3, 2005 - Hi all, Please don't be upset if your post didn't show up here. I am replying via e-mail to all the "welcome back" posts to save time. I was stunned by how many I received in just a couple of hours after re-opening The Beat Goes On. It would be great to never shut it down again so here's hoping! Jon.


James, March 3, 2005 - Hi all, For those who may be unaware, Medtronics sent a notification to cardiologists regarding a potential issue with some of their pacer/defibrillators. For some reason, the link to the press release no longer works at their site but the gist is that some models can fully deplete, without entering the alarm state, due to a shorting mechanism. This has only occurred in 9 out of the nearly 90,000 implanted units but the obviously serious nature of such an issue prompted Medtronics to send out the heads up. No one has been injured or died as a result, though. From the press release:
 
"Devices with batteries manufactured between April 2001 and December 2003 may exhibit this shorting action. Potentially affected models are the Marquisa VR/DR and MaximoaVR/DR ICDs and the InSync I/II/III Marquisa and InSync III Protecta CRT-D devices. Approximately 75 percent of these devices were implanted in the United States. Patients with other models of Medtronic devices or these device models with batteries manufactured after December 2003 are not affected."
 
jnj@spamcop.net
 
Jon's note: Thank you for this - I checked the Medtronic site this morning to put this up and couldn't find anything about it!


Mimi H, March 3, 2005 - Hi everybody, My mitral valve had been showing mild regurgitation but in December new symptoms resulted in a new echo showing an EF down to 35% from 55+ with severe regurgitation, such that the doc consulted and decided I needed repair surgery. He had a cath scheduled for this week, but did another echo last Friday, which now shows mild regurgitation again, still with a 35% EF. He and his buddies went back through several older echos and compared, and the December one was definitely very much different from the others, even though it was the same tech.
     Because the valve regurgitation is so much improved at the moment, surgery is not appropriate at this time, but my question is about the surgery that he anticipated, and which everyone believes I will eventually have to have.
     A local surgeon has been doing experimental mitral valve repairs using laparoscopic and robotic equipment which involves just 3 small incisions for the equipment instead of the usual "big zipper." He reported that patients are in the hospital only two days and go home with no pain prescriptions needed - just Tylenol. Has anyone had this done, and what was their experience?
     The reason this was being considered for me is that I have severe adverse reactions to everything for pain by mouth except Tylenol. I am severely allergic to everything in that class that ends with "ine" like codeine and morphine. I would be very comforted knowing that when the time comes, this kind of procedure could work for me. I would also like to understand why improving my valve function did not improve my EF. We think the culprit in all of this episode may be some Bextra I took for a foot problem. jeffsmimi@earthlink.net
 
Jon's note: Valve function can go radically up and down. Someone I know very well locally has had this happen to her and she doesn't have heart failure or an enlarged heart. Her valve dysfunction has gone from 3 all the way down to barely "trace." Also, have you researched if anyone is doing "endovascular mitral valve annuloplasty" and mitral valve repair - also called the "modified Alfieri." If it would work for your situation, it would be ideal.


Norma W, March 3, 2005 - Hi Jon, I certainly hope everyone who can will donate just a little more than the $5 a month to cover those who would find it a hardship. I usually make my $100 donation as part of my Christmas budget, so others could perhaps spend just a little less on gifts and send to the forum to help those who need this information and sharing of problems so badly.
     Talking of sharing problems, has anyone had what the doctor calls allergic conjunctivitis as a result of any medication they are taking? Symptoms are a continually tearing eye, so one is mopping at it all the time and in a female, it is impossible to wear eye makeup - a disaster! Seriously, it is a great nuisance so I hope someone has a solution (literally!) Norma W. normadroz@aol.com


Susan B, March 3, 2005 - Hi all, I wanted to share some information that I share every day with my clients. There is a food ministry to help people and this program has no income requirements, no forms and no fuss. The web address is www.angelfoodministries.org and it is in 20 states. Please take a look and see about sharing it. I know that money is tight for many people and it really is a blessing. Susan B. gbratcher@kc.rr.com


Jon, March 3, 2005 - Hi everyone, I got a lot of e-mail asking how to donate. We are working on making it a lot easier but for now you can send a check made out to "CHFpatients.com, Inc." Mail it to CHFpatients.com, Inc. 11007 E. 83rd St., Raytown, MO. 64138-3536. See chfpatients.com/about.htm. Donations made in the USA should be tax-deductible and if you live in the state of Missouri, they are deductible for the Missouri Department of Revenue as well. Jon.


Peter S, March 4, 2005 - Hi Jon and everyone, Congratulations on reopening The Beat Goes On. I urge everyone who has not donated before (like me!) to open up their wallets as much as they can afford - and don't neglect to budget some kind of on-going contributions. The site that you have put together is unique in the full sense of that word. Many of us know that already and the newcomers will soon find out. PeterSperl@cs.com


Vicki J's March 4 reply to James' March 3, 2005 - Hi James, I had my ICD replaced at Vanderbilt last week. I believe the implant recall dates are January, 2004 through June of 2004. Mine was implanted 01/17/2004. hey told me 7 people have died so far so they are replacing all of theirs. Medtronic is really playing it down since I'm sure this is really going to cost them. If you need the exact dates, email me and I'll call my doctor. Vicki. vj6464@aol.com
 
Jon's note: Any specific information on this that anyone can get, please post immediately!


Liza K, March 4, 2005 - Hello, everyone! Jon, I am so happy that this site is up and running again! I found this site some time ago and I was so sad that the forum was no longer available. It is such a comfort that the forum is back! It would be wonderful if we could help you do this full-time! You are a very generous and informed person, and your web site is a blessing to so very many! Perhaps you could set up Paypal so we could give you donations via the Internet? (Jon's note: Actually I hope to do that in the next 4 days)
     Since I am new here, I will provide a little introduction. I am a 29-year-old female living in Colorado. I have a pacemaker and take medications to suppress arrhythmias, and I have restrictive cardiomyopathy. I contracted a viral infection in 1994 which damaged both my myocardium and cardiac conduction pathways, in addition to other medical problems (damage to my gastrointestinal tract resulting in malabsorption and chronic nausea, transient anemia of chronic disease, osteoporosis, several endocrine system problems including hormone excesses as with PTH in hyperparathyroidism and hormone deficiencies as with estrogen in hypothalamic hypogonadism, non-rheumatoid inflammatory arthritis, and chronic pain. I am permanently disabled now and just recently was officially qualified as such - a process that took 3-1/2 years, due to my illness, primarily because of my cardiac problems.
     I am both a patient and a clinician, having attended pharmacy and medical school before being forced to abandon my career track (anesthesiology) due to the severity of my illness. I am relieved though, for this educational background. There is no way I could optimally handle my complicated illness and treatment regimen without it! I now volunteer as a patient advocate. This is my way of utilizing my education. It is rewarding to be able to reach a patient population which typically would be lacking in such a resource.
     I am surprised and concerned by the immense need for patient advocacy. So many people find it impossible to have their concerns appropriately considered due to time constraints and an inability to prioritize issues during typical medical appointments, resulting in reduced quality of care received. I so often grapple with feelings of uselessness, something very commonly experienced among chronically ill and disabled populations. At least as a patient advocate, I am "giving back!"
     Anyway, I am very much alone with my illness, mostly because I am younger, so groups such as this are extremely comforting and informative! Thank you for your dedication, Jon. I am so grateful for this site! You have created an invaluable resource here, for ever so many of us! With affection, Liza. picclinegirl@aol.com


Gatha E, March 4, 2005 - Welcome back Jon, We have all really missed your good works. I just wanted to let you know that the oxygen must be helping. My EF has been 45% for 6 years and now after three months on oxygen, it has gone up to 60%. There is no other answer for this. Even at 60%, there are still good and bad days. Our prayers are with you, guy! Jell855859@aol.com
 
Jon's note: This is great news!


Larry T's March 4 reply to James' March 4, 2005 - Hi all, I went in last week to have my ICD checked and was given the news that my device was one of the ones that could fail. I could have it replaced now or wait until it fails. Because this is not life-threatening I will wait. Medtronic is not making this public knowledge at this time. The rep had a copy of an interoffice memo and I got one. What upset me was the fact that they discovered this problem in January of 2003 and I didn't have mine put in until June of 2003. If anyone would like a copy of this report I will be glad to send it to you.
     Welcome back Jon and God bless. carolthornton@comcast.net
 
Jon's note: I'd love to have a copy. I am e-mailing you an e-mail address and my fax number. I have sent a message to Medtronic expressing my extreme surprise and disturbance over the lack of reporting this. They have been very forthcoming with me in the past and I will let you all know how they reply, probably Tuesday.


Allan A, March 5, 2005 - Dear Jon and Readers, I'm really glad to see the forum open back up. I just mailed my donation and even though it's not much (only $10) it is all I can afford to send. I urge others to please send donations to this site no matter what amount. If each of us can send in a little it will add up to a lot. I suffer from CHF with an EF of 22%, CAD and other heart and health problems. I'm a white male, age 47, and feel blessed to still be here! I would personally like to thank Jon for the time and effort he has put into this site. I refer to it often and it has made it possible for me to understand my condition, which in turn has helped me merge with my CHF Specialist in finding and changing medications and treatments as my CHF changes. Love and light to all, Allan A. adaskew04-mail@yahoo.com


Susan B, March 5, 2005 - Hi everyone, I received my letter Wednesday to see about my ICD. The doctor told me there is no need to worry, that this is just an alert. If anyone has more reports of anything different, plese e-mail me. God bless. wormy3229@direcway.com


Jon, March 6, 2005 - Hi everyone, I'm sorry for any strange error messages you received while posting in the past 24 hours. I had a line wrong in my form language. It's fixed now. I'll start thinking in HTML again with a few more days of practice. <g> Jon.


Jon, March 7, 2005 - Well, we put our dog down tonight so I'm a bit short on chat. However, we had a good long time with her and enjoyed every moment. My daughter was home from college this weekend, so both Miss Molly and our daughter got to enjoy each other one more time!
     About donations, we have set up an online donation system but it will take until the end of this week to get all the accounts and processes completely in place. I'll let you know when it is completely ready, and how to use it. It will accept credit cards or Paypal account payments, and you can always send a check as well.
     A huge thank you to everyone who has already sent a donation! It's tough working a full-time job and doing this as well, but who knows, someday maybe I can do this as a full-time job! :-) Jon.


Fred B, March 7, 2005 - Hi all, I received 31 inappropriate zaps from my ICD in a two-hour period. Has anyone else ever experienced this? Did you wish you had died instead? Please respond. Thanks. darfred@webtv.net


Will S' March 7 reply to Gatha E's March 4, 2005 - Hi Gatha, I see that you are using oxygen to help your EF. Can this be applied to anyone with heart failure? My current EF is 20% and it's been this way for 6 years. Also, Jon welcome back and may Heavenly Father continue to be with you and your family. stelco@eatel.net
 
Jon's note: Unfortunately, oxygen doesn't work this well for most heart failure patients. However, you won't know if it will work for you unless you try it.


Evelyn G, March 7, 2005 - Hi Jon, Glad to see ya back up and running. I have big update and news. On February 25th I won my appeal so now I'll be able to recieve my disability. I just have to wait some more for checks to begin. I also have a new doctor. He is only 20 minutes away instead of the 2 hour drive like to my last doc. Besides, my hubby's work changed insurance plans so I had no choice but to change. So far so good - I like this one. He listens to me and makes me feel like I'm heard. He took me off the Triamterene (diuretic) and the potassium pills, and put me on Aldactone and Lasix. He also did an echo right in the office on my first visit and said he will call with the results. I hope everyone is having a good day, Ev. eveysue@hotmail.com


Evelyn G, March 7, 2005 - Hey Jon, Are you still on the Atkins Diet and if you are, how is that going? eveysue@hotmail.com


Jon's March 7 reply to Evelyn G's March 7, 2005 - Hi Evelyn, I am still on Atkins as is my wife. My weight is very slowly going up but it is all muscle from the weight lifting (see this page). I lost at least 36 pounds of fat on Atkins over a 2 year period and have kept it off so far. Today I had egg salad for breakfast, chili for lunch and baked cod with cream sauce and tomato vinaigrette for dinner. Yum! Jon.


Kathy H, March 7, 2005 - Hi Jon, Welcome back! You don't know how much I have missed this place. I will be sending a contribution as soon as possible. My CHF is about the same, but my Rheumatoid Arthritis has improved markedly. Some of you may remember about 6 months ago I posted that if the RA didn't improve I wouldn't care about the CHF. I am seeing the cardio doc more often because I am on the biologics for RA. I am so glad to see this place up and running again. kathy_in_wlsv@verizon.net


James, March 7, 2005 - Sorry all, I have been busy the last couple of days and didn't have a chance to get back in. Here's Medtronics' full press release. Dates of affected ICDs are those manufactured from 4/2001 through 12/2003. Any devices manufactured after 12/2003 are not part of the alert.

Medtronic Issues Notification Regarding Certain Implantable Defibrillator Models - February 11, 2005 - Medtronic, Inc. today said it is voluntarily advising physicians about a potential battery shorting mechanism that may occur in a subset of implantable cardioverter-defibrillator (ICD) and cardiac resynchronization therapy defibrillator (CRT-D) models. In a letter to physicians, Medtronic reported that nine batteries (0.01 percent, or approximately 1 in 10,000) have experienced rapid battery depletion due to this shorting action. If shorting occurs, battery depletion can take place within a few hours to a few days, after which there is loss of device function. There are no reported patient injuries or deaths.
     Devices with batteries manufactured between April 2001 and December 2003 may exhibit this shorting action. Potentially affected models are the Marquisa VR/DR and Maximoa VR/DR ICDs and the InSync I/II/III Marquis, and InSync III Protecta CRT-D devices. Approximately 75 percent of these devices were implanted in the United States. Patients with other models of Medtronic devices or these device models with batteries manufactured after December 2003 are not affected.
     As part of the company's program to analyze products returned from physicians, Medtronic identified nine of 87,000 implanted devices (0.01 percent) with a battery design that exhibited this shorting mechanism. Based on highly accelerated company testing, Medtronic estimates that this rate may increase to between 0.2 percent and 1.5 percent over the second half of device life.
     ICDs shock or pace the heart into normal rhythm after patients suffer rapid, life-threatening heart rhythm disturbances originating in the lower chambers of the heart that can lead to sudden cardiac arrest (SCA). CRT-Ds can also provide electrical pulses to the heart's two lower chambers to improve heart failure symptoms. An ICD or CRT-D device is surgically implanted in the chest in a procedure typically lasting one to two hours.
     "We were able to identify this possible risk through our stringent product testing," said Steve Mahle, president of Medtronic Cardiac Rhythm Management. "Even though the potential for rapid battery depletion is extremely low, we see it as our obligation to alert all implanting physicians to the potential issue and provide ways to help them and their affected patients successfully manage the situation."
     Medtronic began notifying physicians about the situation on February 10, providing them with a list of potentially affected patients and recommending that physicians communicate with those patients and follow them closely. Medtronic is communicating this information so that physicians are aware of the potential issue and can manage it as they feel is appropriate with their individual patients. Additional information about this potential issue is available for physicians and patients at 1-888-775-2702 (24/7) and www.medtronicinfo.com.
     "I appreciate Medtronic's forthright communication about this issue, which will allow implanting physicians to manage this situation with each involved patient," said Dwight Reynolds, Chief of the Cardiovascular Section at the University of Oklahoma Health Sciences Center. "Physicians are in the best position to discuss the circumstances with device patients and ensure they have accurate information."

James. jnj@spamcop.net


Tom S, March 7, 2005 - Well, What a suprise it was to see the forum up and running again. I thought for sure it was history but I am glad to see it is available again. As one of the longer term CHF survivors (10 years) I want to tell others that life is possible with this illness and life can be wonderful and rewarding if you throttle back your expectations and activities. I just got slam dunked again by being too active over the Christmas break (I have eight kids) and I just overdid it and knew something was wrong.
     Last year I had an echo and it showed a possible EF of 20-25% which I thought was about right. During this latest hospital visit (Feb. 5th through the 14th) I had an echo and a catheterization and according to my cardiologist the EF was "immeasureable" and guessed it to be around 5 to 10%. I had a partially collapsed lung due to fluid buildup in the pericardium and abdomen which became infected and my sats dropped into the mid to low 80s. I have to do breathing treatments and I have an oxygen concentrator and a supply of O2 tanks to go out and about with.
     All this has given me fair warning that to continue with my condition as life is normal would be suicide so I am definitely slowing down. By the way I knew I was in tough shape because I could feel my heart beat, including PVCs and my continual a-fib. I got very familiar with them during my stay on the Surgical Cardiovascular wing of my hospital. The prognosis is not good so I will enjoy what time I have left to the fullest and would encourage everyone who visits this forum to do the same.
     By the way a biventricular pacemaker/defib unit was suggested but the doctor felt it wouldn't do much good because of my extremely low EF. Normally he said it would add another 3 or 4% to the EF which could be significant in low EF heart failure patients. Good luck with the web site Jon. It is greatly appreciated. Tom Stocker. bigheart@machomail.com


Dave Townley, March 8, 2005 - Hi Jon, Welcome back! I am certainly glad that your site is up and running and yes, to do my share to keep this site up and running you will receive my contribution shortly. I have DCM and have been on Coreg 25 mg BID, 10 mg lisinopril, 20 mg lipitor, low-dose aspirin, 10 mg Lasix as needed, and spiriva to improve my breathing. My EF as I reached target dose on these meds went from 40 to 30 to 22%. However, in January my last echo showed my EF improved to 40%! My cardiologist said my heart is still compensating and has continued to enlarge to my current 60. He put me on 25 mg Inspra, which is not yet covered by my health insurance. The Inspra has also seemed to help stabilize my weight fluctuations. I have seen some articles indicating that Inspra has not been well received. If it is not approved soon, are there any alternatives? In your opinion, is Inspra worth staying on without without being approved by my health insurance if at all possible? I would appreciate any input. Dave T. townley@verizon.net
 
Jon's note: Inspra was FDA-approved for heart failure treatment October 8, 2003. It may not be on your insurer's formulary but it is definitely a drug worth trying for heart failure if you can afford it. I consider it a better bet than Aldactone (spironolactone) because it has so few side effects.


Bobby, March 8, 2005 - Hello, Has anyone taken the med hytrin or cardura? My pulse goes to the 112 range on these meds. Is this bad or indifferent? My doctors are the rush type and I cannot get much in the way of feedback from them. Any feedback from my peers would be greatly appreciated. Thank you. bobby010nyc@aol.com


El R, March 8, 2005 - Hi all, I think I might have been to this site before, a long time back (years?). I am glad I found it now. I have cardiomyopathy, an ICD by Medtronic, thankfully the serial number is not one of the ones in question but they turned on the alarm just in case. No beeps yet.
     I have been in CHF for the last few weeks and am seeing a local cardiologist this morning. Hopefully, he will tell me I am okay now but my heart hurts like it is sore. It hurts more if I get up and move around a lot. Next week I go back down to UCLA where I have based my care since diagnosed in 1994 (well, really since a badly botched biopsy here). The care here in LV is, uh, lacking something.
     It has been tried twice - giving me a BiV pacer. The first attempt was a disaster (here) with scary complications. The second atttempt (at UCLA) was successful, but then the lead slipped out of the vein. My EF runs around 15 to 25%.
     I am wondering if it is realistic for me to think I might get back to the energy level I had before this episode of CHF. Is it possible for me to get stronger? I imagine I'll be getting the answers to many of my questions in the next 2 weeks. This is the first time I ever experienced not being able to breathe and it was scary. I dropped 8 lbs of fluid and can breath okay now but my heart still hurts, even when I am just lying still, and that is scaring me. Thanks for listening. I will come back and share what I learn. Thanks for being here. elpiscado@aol.com
 
Jon's note: Yes, it is possible to regain your energy level but it is not a sure thing. You need to really strictly follow all the suggestions possible that are listed in The Manual. Cardiologists are famous for saying our hearts can't hurt like this but they can kiss my, well, they're wrong, because I have personally experienced it. Hated it. Went away on its own eventually. I hope yours does too.


Larry T's March 8 reply to Fred B's March 7, 2005 - Hi Fred, I had one innapropriate shock one month after having my implant and I can tell you all that it's no fun. Mine was due to a faulty lead which required another surgery to replace a lead. I assume you have talked to your doctor. You should go to an emergency room at a hospital if this happens again. The setting may be too low. I will be looking forward to hearing your results. God bless, Larry. carolthornton@comcast.net


Joe S, March 8, 2005 - Hi everyone, I need some advice from anyone. My cardiologist told me yesterday I will need a small defibrillator device inserted into my chest to help improve my condition. I had my aorta valve replaced three years ago and have just had routine visits since. Has anyone else ever experienced this, and what was your experience? Joe S. jes@gbis.com
 
Jon's note: Will this be an ICD or an ICD/pacemaker?


Valerie R's March 8 reply to Tom S' March 7, 2005 - Welcome back, Tom. I am also a long-time survivor. I was always told my EF was 15 to 20%. When I had a cath, I was told 10%. It got me pretty upset, but I still feel good. As my doctor says, it's not the EF, it's how you feel. Evidently, the transplant evaluation team feels the same. Val. vgrogers@aol.com


Michelle D, March 8, 2005 - Hi Jon, I'm glad you are back too. Donation on the way! I am glad to say that I applied for the Social Security in September and got it in January! They say I have to be re-evaluated in three years. I was very surprised and relieved to get it so soon. I guess I will qualify for Medicare in September of this year, I am still paying 300 a month for my health care on top of 190 dollars a month for the copayments on my prescriptions.
     Oh hey, just in case anyone hasn't heard of www.RXoutreach.com, they are a great resource for anyone who has to buy their own prescriptions and has no coverage. It will cost 18 dollars for a three-month supply of medicine and 30 dollars for a 6-month supply. Of course, not all our medicines are on their list but five of mine are, including my diabetes meds, Lasix, lisinopril and some of my asthma meds. I am starting to use them now so I will be saving some money.
     I am up to 25 mg Coreg twice a day and it is finally starting to keep my heart rate down. I have been tachycardic up until they put me up to this dose. I am feeling better most of the time. I had a really bad bout of meningitis over Thanksgiving and was actually in the hospital for the holiday and for 2 weeks afterward. It was not a good thing and my blood pressure was hovering about 67 over 28 for a week. The cardiologist said I was lucky to have survived it. The fevers were terrible! I swear, I am never going to be sick again! I refuse!
     I feel soooo much better now and it took a couple of months for the headaches to go away but now I am great. I will take my yearly trip to Kansas next week and will stay there for a month or so. I love the change from San Diego to Topeka! Call me crazy, but I just love spring! Anyway, I'm glad you are back, Jon and I hope everyone is doing well and hope you know how much you are appreciated and blessed! See ya, Michelle D. escomeesh@hotmail.com


Jon B, March 8, 2005 - Hi, I was wondering if it is okay to cut (split in half) Coreg. My8 doctor prescribed 25mg pills but wants 12.5mg AM and 12.5mg PM. I just don't know if it is okay to cut them. Some meds do not allow that. Thanks. 1800jb@iwon.com


Jon's March 8 reply to Jon B's March 8, 2005 - Hi Jon, I split 25mg Coreg myself. Because of their weird shape, my pill cutter won't do it, so I snap them in half with my thumbs. Coreg has a weird sort of "skin" on it that holds the halves together quite well. I don't always get them exactly the same size but in my experience, as long as they are close, it works just fine. I hope it helps. Jon.


Jacky's March 9 reply to Jon B's March 8, 2005 - Hello, I also break my 25mg Coreg in two so I get two 12.5mg pieces to take twice a day. I started to do this when I discovered the price difference! Check it out, it is well worth doing and I figure as long as I get the 25mg in a day it is okay. Jacky. jackymwb@earthlink.net


El R's March 9 reply to Jon's March 8, 2005 - Hi Jon, I am so impressed by all the info you have gathered here. I have been doing lots of reading. Many thanks, I will send you something soon to help. I saw the doctor this morning and I am still "in" CHF, but mildly. They are still unable to hear a blood pressure on me but can "see" it by watching when the needle starts to jump. I know that can't be a good thing. I am anxious to get down to UCLA and see what the plan is for me. They discussed replacing the left lead and stitching it in place, going in between my ribs to access it last year but I was doing okay so we chose not to do it at that time. That may change now. elpiscado@aol.com


Catherine, March 9, 2005 - Hello, I just want to let anyone who's interested know about what happend to me. I am a 55-year-old female who was diagnosed with CHF about 6 years ago. I was on a sickness benefit for about 4 of those years. Then I met an old friend at a social function. She asked me "what's wrong with your hands?" They were swollen like sausges and were a pale shade of blue. When I told her, she told me all about a substance called CoEnzyme Q10 (ubiquinone). She told me to read all about it and I did. Then I started to take it at just 30mg per day and boy, what a difference it's made to my life. I'm now working as a manager of a small liquor outlet. I strongly recommend anyone with this condition to check it out. Catherine. cp_hughes@yahoo.co.nz


Keith L's March 9 reply to Jon B's March 8, 2005 - Hi Jon, You may want your doctor to write a prescription for the "scored" tablets. Coreg comes 3.125mg non-scored and 6.25mg,12.5mg, and 25mg scored tablets. keith340@webtv.net


Joe S' March 9 reply to Jon's March 8, 2005 - Hi Jon, The defibrillator is not a pacemaker device. My cardiologist stated this would allow him to increase some other dosages to make my heart stronger. Whatcha think? I'm sure glas you and yours are back. Joe S. jes@gbis.com
 
Jon's note: I honestly don't see how an implanted ICD would allow your drug doses to increase. I would ask him for a very specific explanation on this? Does anyone see something I am missing here?


Madeline D's March 9 reply to Jon B's March 8, 2005 - Hi Jon, My Coreg dose was just increased by the EP doc. I was taking 12.5mg twice a day. They wanted to add an additional 6.25mg twice a day. The doc said to split the current 12.5mg pill to do this so I guess there should be no problem. I split mine and have only added the 6.25mg to my night time dose so far. That was about a week ago and the increase is still kicking my butt. I am not quite ready to add any more to the morning dose. mdaugherty@nc.rr.com


Cary Deen, March 9, 2005 - Hi Jon, It's great to see you back! I've made my donation and plan to make many more! I have missed this forum so much. Jon, your are to be commended on what you have done with this site. I know a lot of people who visit this site feel the same way. Everyone, let's get out those checkbooks and make certain this message board is never shut down again! Thank you Jon, for being the person you are. cdeen10@bellsouth.net


Athena B, March 9, 2005 - Hi Jon, I wish you all the best on keeping this forum and site going. I have found nothing on the Internet to compare to this - it is the best and is greatly appreciated. I have CHF and asthma (along with other things) and have had some very scary episodes of pulmonary edema. I had a terrible doctor that never told me to cut back on my sodium or fluids, and since I normally have regular or low blood pressure, I thought that I didn't have to worry about salt intake. I am also a big water drinker so I was actually drowning myself every time I would get sick - and not even realize it!
     When I found your site it was a real eye opener for me. My mom got me in to see her doctor (who actually called my doctor and had a few words to say to him!) She is great and now I am feeling much better. When I fall off the wagon (like eating all the wrong stuff and not taking care of myself) I pull this site up and re-read the things I need to do. It is real inspiration and I can't thank you enough. I hope that you can keep it up. Athena. athenatheauthor@yahoo.com
 
Jon's note: The old-timers here have heard this from me too often, but I have to say it here. All credit for this site and the good it does goes to Jesus, plain and simple - inspiration by Jesus and mistakes by Jon.  :-)


El R's March 10 reply to Jon B's March 8, 2005 - Hi Jon, When I was taking Capoten and they reduced my dose, I was told to cut them in half. I found that when I did that the smell of the inside of the pill was so bad I couldn't gag it down. <g> Who knew? elpiascado@aol.com


Anita S, March 10, 2005 - Hello Jon, Welcome back. Gene and I have missed reading the forum very much. Because of this forum and your informed readers, we found out that Gene's defibrillator is one of the ones that could go bad. I called Medtronic to find out if his model number was on that list. His cardiologist will be calling tomorrow with his appointment to have his device checked. I hope that you receive enough donations so you can quit your job and only have to work on this forum. A lot of people need you. Do you prefer the donations monthly or for the year? Thanks again for being here for all of us. Take care, Anita. dreamersila@netscape.net


Jon's March 10 reply to Anita S' March 10, 2005 - Hi Anita, The key here is "informed readers!" Without all of you, this forum goes nowhere very quickly. Thank you all. As I type this, my wife is finishing linking the company bank account with the donation system account. You can set up automatic recurring payments (as in monthly) when the new donation system is in place, or do one annual donation - it doesn't matter to us. I hope to have this running by Monday night but with a full-time job, working out and cooking, it's hard to get to it! Jon.


Stephanie's March 10 reply to Joe S' March 9, 2005 - Hi Joe, I agree with Jon. My understanding is that a defibrillator does not help improve heart function. The defibrillator is your own personal EMT that only "works" if you heart rhythm gets out of whack. My cardiologist has not done anything with my meds since my ICD was implanted, except the normal Coreg increases. My arrhythmia specialist has me on no additional medications. I would definitely get some more detailed info from your doc. howsares@saic.com


Tom S, March 10, 2005 - Hi everyone, If I heard a news item correctly, Medicare has now approved the biventricular defibrillator/pacemaker and will pay for the device and the implantation procedure. The cost is approximately $30,000 and now that it has been Medicare-approved, I am certain it will be offered to a lot more patients. I was told I probably would get one then the doctor rescinded the suggestion due to medical concerns in regard to its usefulness, not to financial concerns. Just thought you would like to know. bigheart@muchomail.com
 
Jon's note: This is great to know - thanks, Tom! I think the only snag is patient selection. Medicare has its own patient selection criteria. I can't really blame them - if they used the standards that researchers want them to use, Medicare would be broke in a year. Everyone, please always check with your insurer (Medicare or otherwise) before deciding that you qualify for something.


Tom S' March 10 reply to Jon B's March 8, 2005 - Hi Jon, Splitting Coreg is not all that difficult with the blade-type splitting device that has the V-shaped slot. You have to remember not to cut the pill, rather it is sort of like breaking a brick or tile in half. I apply enough pressure until I hear a little "crack" sound, then I open the device and it is very easy to hand-split the pill from that point. I do all sorts of meds like that because my cardiologists cut most of my dosages in half after finding they were masking symptoms that caused some serious problems requiring hospitalization. For example I was taking 50 mg of Coreg a day, now I am down to 12.5 mg twice a day. My Lasix dose was 320 mg a day now that has been cut to 160 mg, and so on and so forth. Thank goodness I don't have to split the K-Dur pills. I would need a chain saw to do that. bigheart@muchomail.com


Vicki J's March 10 reply to James' March 3, 2005 - Hi James, I want to apologize and clarify the information I gave you about the ICDs. So far there have not been any deaths that Vanderbilt is aware of. My nurse at Vanderbilt University Hospital told me that units involved were made before 12/2003. So far there have only been 9 cases where the unit has failed. I had my original implanted 01/19/2004 and it was replaced 02/18/2005. My heart was stopping, so I felt it was imperative that I got my unit changed, plus Medtronic is picking up the expenses for now. I don't know if they will in the future. Sorry for the misinformation. You really have to go by the serial numbers to know if yours is one of the recalled units. vj6464@aol.com


Tom Campbell, March 10, 2005 - Hello everybody, My heart failure doc and I have finally given up - after trying for months several times it seems that I don't tolerate Coreg at even the lowest dosage. This has me worried because of how effective Coreg seems to be. Starting Coreg worsens my weakness, fatigue and SOB. Symptoms stay worse while I take it, improve when I stop. The doc says all beta-blockers would affect me the same. Any advice from anyone? tomcam333@cavtel.net
 
Jon's note: Try Toprol-XL - it has no alpha-blockers like Coreg does and it is slow-release so there are only very small blood level spikes.


Mary Anne's March 11 reply to Tom Campbell's March 10, 2005 - Hi, I wasn't able to tolerate Coreg, could not get past 3.25 mg. However, I am able to take Toprol-XL (a beta-blocker) with absolutely no problems. I hear more people on this site talk about problems with Coreg. Is it really so important that a person needs to feel bad while on it? Life is more than an EF. mameredith@nauticom.net


Marilu M, March 11, 2005 - Hi all, Several months ago (6 to be exact) I wrote about my Bob and his problems with dizziness. At the time his cardiac doctors were positive it was Altace causing the problem and they had him discontinue it and take only Coreg. The dizziness improved but did not stop. He became more and more fatigued and his color was sometimes yellow but mostly gray. His legs ached and he could barely walk a flight of stairs.
     Many doctor visits later, one doctor suggests doing a CBC (complete blood count) on Bob, which resulted in a diagnosis of extreme anemia. Two pints of blood later he is a new man. The cause of the anemia was a drug he was taking for a skin problem. For 6 months both us and all his doctors attributed his problems to his heart condition - it ain't always so. rlhmlm@planetkc.com


El R, March 11, 2005 - Each day seems to bring something new. Yesterday I learned that the blood flow seems to backing up in my abdomen, in the vessels that feed the organs, and possibly the organs themselves. I will have CT scan today to see. I noticed some new, bright blue veins on my belly that go from flat to engorged. The doctor was saying things like "chronic CHF" and "congestive heart" and "liver failure." :-(
     He kept using a word, and he has a bit of an accent, so I was thinking it was a word I was not familiar with. It started with a C, I wanted to ask him to write it down. It was in reference to this abdominal thing. When I talked to the nurse at the other office (in Los Angeles) she said the only word she could think of is cirrhosis. Could result from this backup of fluid?
     I do have cysts on my liver that they have been watching. I have always thought it is because my poor liver is trying to filter out all these meds. Is anyone familiar with this as a complication? I was never a big drinker. My husband was treated for hepatitis B but is in remission. I have been vaccinated. My labs looked better this week, my BNP is down to 414 from 544. So I am better, just not all better. elpiscado@aol.com


Giorg, March 11, 2005 - Hello Jon, Welcome back. We all missed you as you can see from the posts. I have the following issue: It looks like my EF is going down. After a couple of years with an EF of 45% and no need of diuretics on no particular diet (just healthy but not so low-salt), just watching fluid intake, now in the last 8 months my EF dropped to 30% and I need 50 mg of Lasix a day (sometimes 75 mg). I have to take less then 4 pints of fluid and I have to follow a very low-sodium diet. I feel worse and more tired. I am still classified as class one but who knows for how long? It looks like I am going downhill, hopefully slowly.
     I have genetic DCM and the average prognosis with my genetic defect (in lamin A/C gene) is pretty poor. Statistically, if one with my defect begins to go down, very rarely he goes up (while ups and downs are quite common in DCM patients usually). I want to try every medication I can.
     I am already on the optimal therapy but now I am looking at supplements. I already take 2 mg of L-Carnitine. I would add 150 mg of CoQ10 that I read should be effective, especially when taken with L-Carnitine. My doctors do not believe in it. Should I go without his approval? Is it worth it? Actually, I read also many pubs that say it has no effect at all, while once stopped it can make you go down. Should I try or not? It looks like there are more cons (my doctor does not want me to take it, I could go down once stopped) than pros (it might help me). Thank you all. giorgclunei@hotmail.com
 
Jon's note: To max out supplement therapy, I suggest following the suggestions at chfpatients.com/CHFinfo.htm#supplements. I do not know of any down side to taking CoQ10 except the high price.


Lisa K's March 11 reply to Tom Campbell's March 10, 2005 - Hi Tom, If it helps, this was my experience with Coreg: When I was first diagnosed with cardiomyopathy, the doc put me on Coreg first. The initial dosage was 3.125mg twice a day. Well, that tiny little pill knocked me out. I slept a lot; 10 to 12 hours every night and then a mandatory 2 to 3 hour nap around noon or 1:00 PM. I was really tired, lethargic, had no energy and had what I percieved as worse SOB but I stuck with it. It took months for me to get used to taking the stuff. My docs slowly raised my dosages and I struggled with staying functional. I found that I didn't come out of that "funk" until my dosage was stable (no increases) for about 3 months. Now I don't have any more of the side effects I described above.
     In retrospect I wish that my docs had just upped my dosages quicker so that I reached my target dose sooner. That may have saved me a few months in the "funk" zone. packupletsflyaway@hotmail.com


Margaret D's March 12 reply to El R's March 11, 2005 - Hi, I would venture a guess that the doctor was talking about ascites, which sounds like a-SITE-ees. This is when you have that large backup of fluid if you are in right heart failure. It is common with chronic CHF. The liver gets so congested with fluid that fluid accumulates in the abdomen. It can be a significant amount sometimes. Ascites doesn't always come from drinking or hepatitis. Your liver enzymes probably are elevated. I frankly don't know anything about cysts in the liver. Your BNP sounds pretty good. Keep us posted. mdavis10@tampabay.rr.com


Michelle D, March 12, 2005 - Hi everyone! So I have been on the 25 mg twice a day of Coreg for about 3 weeks now and until the beginning of this week everything seemed okay. Now I have been having attacks of this horrendous, gasping, dry cough - not all day or anything but it seems to happen at least 3 or 4 times a day and it really sounds bad. It also takes a lot out of me. I also have a kind of uncomfortableness on the right side of my sternum that I don't recall having till now. My legs feel very heavy too. I called my doctor's office and he suggests I stay on the dose for another week and see how I feel. If I still feel bad, then I can go back to the 12.5 mgs twice a day again. Anyone? escomeesh@hotmail.com
 
Jon's note: Michelle, do you take an ACE inhibitor?


John Rice's March 12 reply to Fred's March 7, 2005 - Hi Fred, Yes, I had quite a few days like that in the past few years. It is very frightening, and it also isn't the most pleasant feeling. Not quite 31 in a day, but I quit counting after awhile. I thought for sure I was going to die after the 5th one in about 2 minutes. I was out cold in my front yard lying in a puddle of mud from my new sod. I don't know how long it was, but I woke up and crawled into my house like a scared puppy. I was taken to the hospital and spent a night there with no real help at all. It has happened to me numerous times where it will fire and fire, and you thank God you signed those life insurance papers. Since I had my av nodal ablation and got my new 3-lead ICD, I haven't had many problems at all. E-mail me if you wanna talk. John Rice. djhrice@netzero.net


John Rice, March 12, 2005 - Hi, Does anyone have any news of a big class action lawsuit regarding amiodarone? I took 800 mg per day for 5 years and I contracted bad pneumonia 3 times in 3 years. Is this toxic lung disease I am hearing about maybe related to why I got pneumonia? Just wondering. djhrice@netzero.net


John Rice, March 12, 2005 - Hi everyone, I have been on here since 1999 and sometimes lost touch just because I felt sorry for myself. I have had so many surgeries and tests that I became a professional patient. I am so much better now compared to then with an EF of 8% now up to the mid 30s. But coming here all these years and reading and listening to all this great stuff has helped me tenfold. Jon, I know you hear this a lot but the check is in the mail. Thanks for your hard work. John Rice. djhrice@netzero.net


Stephanie's March 12 reply to Lisa K's March 11, 2005 - Hi Lisa, That's my story too. I seem to finally be doing okay on the Coreg when my doc increases the dosage. Then it's back to square one. I'm not up to target dose yet (next visit!). When my dose was increased to 12.5mg the cruddy feeling has not been so extreme. I hope it stays that way with the final dosage increase!
     The diminished symptoms may be also because I am participating in a study for an implanted device called the Optimizer II. This device is supposed to improve heart function and actually make CHFers feel better! It's a double-blind study so I don't know if my device is turned on or not. I seem to have some strange feelings pretty frequently, that feel exactly like what I feel when the study technician tests my device and turns up the power! So I'm thinking it's turned on. Plus, I do feel somewhat better. I still have SOB and fatigue, but it's not the rear-dragging, can't concentrate, put me to bed fatigue that I had before. So who knows, it may be all in my head, but either way I figure if I'm feeling better it's doesn't matter if it's the device or my head! howsares@saic.com


James S, March 12, 2005 - Hello, Is there anyone who partaked of Vasogen's Celecade PH2 study or the PH3 Acclaim trials currently underway who can give a review of how they have fared? Any input would be greatly appreciated. Thank you. different.drummer@rogers.com


Sandy N's March 12 reply to Joe S' March 8, 2005 - Hi Joe, I had an "ICD" inserted in December of 2004 and I have so much more energy now. It's the best thing I've done since being diagnosed with CHF. Good luck to you! bleuskiiisgrl@yahoo.com
 
Jon's note: I am intensely interested in this. Are you "absolutely certain" that this is not a combination ICD/pacemaker device, or a pacemaker? If not sure, can you give a model number and manufacturer so I can look it up?


Sandy N's March 12 reply to Giorg's March 11, 2005 - Hi Giorg, Since being diagnosed with heart failure, the two things that have made a huge difference in my energy and well being are taking CoQ10 and having device implanted. I am able to walk longer and do so much more without losing my breath or energy. Best of luck! bleuskiiisgrl@yahoo.com


Sandy N's March 12 reply to Fred B's March 7, 2005 - Hi Fred, Please check with your doctor or the manufacturer of your ICD. If these zaps were in error, they will re-set your device settings. Thankfully I have never been zapped! Good luck! bleuskiiisgrl@yahoo.com


Jon, March 13, 2005 - Hi everyone, The "Make a Donation" button at the top of this page should now be active. There is not yet an option for recurring or "subscription" payments, only one-at-a-time donations. More options will become available as I have time to get them ready. You can pay through this button with your PayPal account, or with a credit card even if you don't have a PayPal account. You can also donate using non-dollar currencies now.
     I am sorry it took so long but I had my accountant daughter read all the legalese paperwork first which took awhile, then I set it up and ran sample transactions to be sure they went through.
     Please let me know if you have any problems using this online donation system. It is a secure system. CHFpatients.com does not release any information about you from this donation system unless required by law to do so. Our privacy policy is online at chfpatients.com/privacy.htm. You can also write us a check. Make it out to "CHFpatients.com, Inc." and mail it to CHFpatients.com, Inc., 11007 E. 83rd St., Raytown, MO. 64138-3536. Jon.


El R's March 13 reply to Margaret D's March 12, 2005 - Yes! That makes sense! I cannot tell you what a relief it was to read this. Thank you. Many things make sense after doing some reading on the links. Big thanks to Jon too, for all this info gathering! My BUN is a little high, total protein too. I guess that low blood pressure goes along with low blood flow. I understand it better now and am not so scared. This is the first place where I have ever found info on how to decipher the lab work - at last!
     I am feeling a bit better today.I had to fast yesterday 8 hours for the CT scan and I got very dehydrated and felt bad. They had a hard time finding a vein, then blew it. It wasn't their fault, I have no good veins left. Today I actually felt like I had more energy, was able to run some errands with my husband with no SOB, and did not feel so wiped out after all the walking I did. Maybe I am starting to come out of the CHF? At least, the symptoms seem to be lessening. Thanks again! elpiscado@aol.com


Jon's March 13 reply to El R's March 13, 2005 - Hi El, I'm glad you're feeling better. :-) However, please call your doctor and make sure what word he really used and what it means to you treatment-wise. This is your life and it doesn't pay to guess. If we want to live longer and feel better, we have to take steps on our own behalf since most doctors dont' make sure everything is properly understood by you or by him.
     If you can't call and press for an answer - it's very hard for many of us to be aggressive with doctors - immediately order a copy of your medical record from this doctor's office. It may cost you 10¢ a page but then you'll be able to read all his comments typed up in black and white, and research what they mean at your own pace.
     That lab work page took me 6 months to research and write. Only one page took longer to write on the whole site. Different labs and medical textbooks disagree on what is normal so I had to really dig. Doctors act like all medical knowledge is factual but there's a lot of opinion on what's normal and what's not out there even in doctors' offices, hospitals and labs. It's good to know the page helps people. Jon.


Mary Anne M, March 13, 2005 - Hello, There is an interesting article in the New England Journal of Medicine published 03/07/2005 on the effect of cardiac resynchronization on morbidity and mortality in heart failure. It's worth reading for anyone recommended a BiV pacer. mameredith@nauticom.net


El R's March 13 reply to Fred B's March 7, 2005 - Hi Fred, I had an ICD fire 4 times when it should not have, during the surgery to implant it. I flatlined each time. They were just bringing me up out of the anesthesia the first time, so I was awake. My arms went flying and I scared the tech big time. (Now when I see her I can't resist making a bzzz bzzz sound <g>) I do not want to experience that again ever. I had phantom dreams and kept reliving it, awakening convinced it had happened again. That really hurts! I cannot imagine getting zapped 31 times.
     In my case it was caused by an old lead causing electrical interference, the device was also not capturing. Once they got the complications under control they took me back in and removed the lead. No more zaps. I hope you get your situation resolved, that is too scary. elpiscado@aol.com


Sandy N's March 13 reply to Jon's March 12, 2005 - Hi Jon, This is an ICD/pacemaker device, a biventricular (CRT) device. I can't tell you how much better I feel now. This has been a godsend. bleuskiiisgrl@yahoo.com


Jon's March 13 reply to Sandy N's March 13, 2005 - Hi Sandy, Thank you so much for the quick reply. This is a very confusing issue for many readers here because of the way people refer to their implanted devices. I hope everyone can follow this as I run through it - it's very important.
     An ICD is not biventricular or 3-lead and it does not actually make you feel much better on a day-by-day basis. On the other hand, it will save your life! An ICD is a device designed to correct potentially deadly irregular heart rythyms. It can act like a pacemaker but only briefly and only to prod your heart back into a correct rhythm. If that short pacing episode doesn't work, it proceeds to "zap" you to stop your heart. When your heart restarts, it should be starting in a normal (sinus) rhythm, like hitting a "reset" button on a piece of machinery.
     A pacemaker actually takes over control of your heart's electrical rhythm system, making it beat normally. A pacemaker may control your heart beat all the time or only part of the time. A pacer (another term for pacemaker) may or may not be a BiV pacer, also called CRT or 3-lead pacemakers. Only people who really fit the proper patient selection standards will do better on a BiV pacer - not all heart failure patients. A few CHFers will actually do worse with CRT, but not many.
     An ICD/pacemaker is both types of device in one package and performs both functions. Please refer to your device as a pacemaker if it is a pacemaker or an ICD/pacemaker. Lots of readers are being very confused by people calling thier pacemakers ICDs, when they are not strictly ICDs. It makes understanding therapies very difficult when people use names that don't fit each therapy.
     Sandy, I really appreciate you responding so fast and with such accurate information (I didn't post all of it). This gave me the chance to hopefully clear it up for a lot of people. :-) Everyone, please follow the links in my post for more detailed explanations of these devices, plus lots of pictures. Jon.


Christine N, March 14, 2005 - Hello everyone, Something happened with my BiV pacer that I wondered if anyone else has experienced. The device was implanted in December of 2004 as part of a Guidant trial at the University of Utah. My settings were a blind study to me and my doctors. After 6 months, we found out that I was not paced with the CRT. They changed my setting to be paced on both sides. I started feeling worse and my cardiologist here in Boise said I should call them and have them put it back to the way it was, which I did. While I was paced on both sides, a couple of times a day I would have a clicking sensation in my heart. Has anyone else ever felt this clicking sensation?
     Thanks Jon for this site. Since the BiV pacer didn't really help, I have had to go on disability. I was approved for my personal disability insurance and payments will start in April. I am still waiting for Social Security. Wish me luck! I'll send some money as soon as I figure out my finances. cnanabele@cableone.net


Michelle D's March 14 reply to Jon's March 11, 2005 - Hi Jon, I take lisinopril 20 mg a day. Would that and the Coreg do it? Michelle. escomeesh@hotmail.com


Jon's March 14 reply to Michelle D's March 14, 2005 - Hi Michelle, It is more likely to be the lisinopril. ACE inhibitors cause a nasty cough in a lot of people and it can start at any time, even after being on the drug for years with no problem. The only way to tell is a "drug challenge." That's where you stop the ACE inhibitor for at least 2 weeks, then restart it to see if the symptoms go away and then come back again. It's the only way to be sure. Jon.


Chris J, March 14, 2005 - Hello Jon, It is great to have you back. Thanks. Sent our check out yesterday. My husband,Ryan had triple bypass surgery in March of 2000. This past week he has had low blood pressure of 72/56 with tightness in his chest, very short of breath, and more tired than normal. He also has COPD, lupus, and is 56 years old. Friday during our doctor appointment, it was indicated that blockage may be the cause. He has a heart cath scheduled for Wednesday.
     Yup, we are scared. Can the bypasses be failing? Other arteries blocked? Ryan doesn't have much extra strength. He is on Coreg and the usual meds as well as oxygen and nebulizers. His EF last January was 39%. What do you think? Stents? We can't think of another open-heart surgery. What is an Intra-Arterial Assistive Device? Our son mentioned that. We will take any advice you can offer. Thanks. Ryan and Chris. tibia456@aol.com


Jon's March 14 reply to Chris J's March 14, 2005 - Hi Chris, I am very sorry to hear that Ryan is doing poorly. I can't offer iron-clad advice because his situation is quite uncertain - his symptoms could be cause by the COPD or his heart. Yes, bypass grafts do eventually reclog in most people, but there is no way to know if this is the case with Ryan until a cath is done. A stent, probably coated to prevent quick reclogging, may be one way to go if the cath shows closed grafts.
     I am not sure exactly what your son means. He may mean an LVAD (see chfpatients.com/implants/lvads.htm) or an IABP meaning intra-aortic balloon pulsation. Both are only used in critical acute heart failure and I doubt Ryan qualifies for either. The LVAD is usually only used in patients already requiring inotropes or awaiting a heart transplant. The IABP is a temporary device that can only be used in the hospital.
     If Ryan's grafts have closed, reopening them is the only sure-fire way to improve his symptoms. Please let us know how it goes. If I didn't give enough information, please say so and I'll try again. Jon.


Valerie R's March 15 reply to Vicki's March 10, 2005 - Hi Vicki, How does one find out the serial numbers that are affected by the Medtronic recall? vgrogers@aol.com


Valerie R's March 15 reply to Tom's March 10, 2005 - Hi Tom, When my doc was out of town, his partner and my PCP played with my medication. Coreg did not work for me. I'm on Toprol-XL and feel fine. vgrogers@aol.com


Chris L, March 15, 2005 - Hi everyone, My father in law is a CHF patient in New York City. He has had heart failure for 30 years and was being treated by a cardiologist. He now needs a CHF specialist in New York City. Does anyone have any advice on good doctors in the city? I found one online, Dr. Marrick Kuken - can anyone recommend him? Thanks. clysaght@charter.net


Dale E, March 15, 2005 - Hi everyone, I am very glad to see the message board is back up and running. I have posted here many times regarding my dad, and here we go again. He was taking pacerone for about 3 months and had a chemical reaction to the medicine. We called the pharmacy, which put us in contact with the drug manufacturer, who told us he had the reaction that only like 5 or 10% have. He got terrible tremors, itchiness, he had stroke-like symptoms, and since October he cannot sleep.
     I believe he had some trouble prior to the drugs but since then he cannot sleep at all. He started taking sleeping pills and I believe him to be depressed along with not being able to sleep. Does anyone here have trouble sleeping? How do the antidepressants work with heart failure? My dad is not a depressed person, I think this has gotten the best of him right now, and he is taking sleeping pills so he can sleep all day and not think about his condition. Can anyone give me any info to help? God bless. Dale. Homecapitaldale@hotmail.com
 
Jon's note: Many CHFers have insomnia, including me. To this day, I take a prescription sleeping pill occasionally. I hope others write with suggestions, ideas, or comments.


Susan L's March 15 reply to Dave Townley's March 8, 2005 - Hi Dave, I have been on Inspra about 5 months. I was previously on Aldactone (spironolactone) but I developed tenderness in the breasts. Thus the doctor replaced it with Inspra. I had trouble getting it covered with one health care plan, they wanted all sorts of documentation from my doctor. Instead I siezed the opportunity to switch to another carrier in January. The new one has covered it without a squawk. I have had no side effects from it that I have observed yet. Someone at your cardiologist's office may be able to provide enough data that your health care plan will agree to cover it in your case. Give it a try and good luck.
     I was searching old posts to see if anyone has complained of fullness in the ears, especially after exercise. Two people mentioned something I relate to: Lisa Ricks (02/18/04) and Athena B (not sure when, can't find it now). I get a ringing/wave noises and feel pressure like my ears need to pop. Why would that be?
     I have such low blood pressure that when I attend cardiac rehab, they insist I drinks quarts of water. I think I am drowning myself and wonder if it isn't causing my system to work harder to filter all that water. When I retain fluid, it is definitely in the abdomen. I can't help but think what a vicious circle I am putting my body through by taking fluid pills, pushing the heart to work harder by exercising and then pounding down half a gallon of water. Any comments/suggestions would be appreciated. susanlocurto@hotmail.com
 
Jon's note: I don't mean to be flip, but I would simply refuse to drink all that water. CHFers usually have purposefully caused low blood pressure due to meds - it's neither unusual nor a bad thing.


Margaret D's March 15 reply to Dale E's March 15, 2005 - Hi Dale, I can tell you my experience on amiodarone (Pacerone). The very first night I took it I had great trouble sleeping. For months I would wake up every 15 minutes. I begged the doctors to do something since I never got any restful sleep. Finally I got seen by a sleep specialist who decided I had severe reflux. I had no real symptoms of it but it can happen with this drug. I slept much, much better the very first night I was treated with Nexium. Now I take Protonix but they are all similar - proton pump inhibitors.
     I also was dropping my oxygen saturation while I slept and now am on oxygen at night only. That also made a huge difference in how I sleep. This may not help at all, but I wanted to share my woes. As Jon says, sleep problems are more the rule for us CHFers than the exception. He might want to have a sleep study done. mdavis10@tampabay.rr.com


Jon, March 15, 2005 - Hi everyone, Just a note. I went to a "function" with my wife Saturday and ate high sodium food for 2 meals. Now remember that I have over the past ten years returned to a normal EF, a good Vo2max and a normal BNP result. However, I gained 7 pounds - all fluid. I took 10mg Demadex and some prescription potassium next day. By bed time, I had dropped all the fluid. It just goes to show that good numbers don't mean everything. Low-sodium eating is terribly important to CHFers in general! Jon.


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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