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

Pauline B 5-16     seek beta-blocker experiences
 
Robin Lynn 5-16     to Ben and Jon
 
Jon 5-16     tie-tying question for the gents
 
Gwen Sanders 5-17     is elective surgery safe?
 
William B 5-17     bypass deemed too risky for me, update
 
Autumn's 5-17 reply to Stephanie's 5-14     memory problems
 
Autumn 5-18     update, prayer request
 
Ginger's 5-18 reply to William B's 5-17     question, prayer requests
 
Alexis A 5-19     CHF & Disability, fibromyalgia questions
 
Mary Lou's 5-19 reply to William McChargue's 5-15     heart-specific vitamin formulas
 
William B's 5-19 reply to Ginger's 5-18     terminology & more
 
Ginger 5-19     Sarah F update
 
Julie G's 5-19 reply to William B's 5-17     what type of test is that exactly?
 
Walter K's 5-19 reply to Mary Lou's 5-19     about that salt substitute & a question
 
Dale Chambers 5-19     Ann C got a heart!
 
Jon P 5-21     can I travel by air with CHF?
 
Jon's 5-21 reply to Jon P's 5-21     traveling by air info
 
Jack D's 5-21 reply to William McChargue's 5-15     salt substitutes
 
Bob N's 5-21 reply to William McChargue's 5-15     salt substitutes
 
Debra's 5-21 reply to Dale Chamber's 5-19     good news about Ann!
 
William B's 5-21 reply to Julie G's 5-19     chemical stress tests
 
Jon's 5-21 reply to William B's 5-21     chemical stress tests
 
Tracey C 5-21     question - abnormal heart wall motion
 
Lisa 5-21     seek those with adriamycin induced cardiomyopathy
 
Debra C's 5-21 reply to Stephanie's 5-14     memory problems & more
 
Ben B's 5-21 reply to William B's 5-21     stress test names
 
Ben B's 5-21 reply to Tracey C's 5-21     stopping all CHF meds, doctors
 
Ginger's 5-21 reply to Tracey C's 5-21     and update on Sarah F & to Dale C
 
Mary Lou's 5-21 reply to Walter K's 5-19     thanks for the info!
 
Vee's 5-21 reply to Pauline's 5-16     beta-blocker experience
 
Vickie K's 5-21 reply to William B's 5-21     stress test names
 
Autumn 5-21     update, need some answers
 
Jon's 5-21 reply to Autumn's 5-21     one possible source for answers
 
Jon 5-21     salt substitutes
 
Jon 5-22     page update
 
Autumn's 5-22 reply to Jon's 5-21     thanks for Url & more
 
Claire E 5-22     update, memory problems
 
Joshua 5-22     hyperbaric oxygen therapy
 
Tracey C 5-22     update
 
Wendy B 5-23     families not getting it
 
Christy P 5-23     EF going up - Disability worries
 
Wendy B 5-23     update
 
Sharon P 5-23     good result of bad memory
 
Stephanie 5-23     thanks to all who replied
 
Tony T's 5-23 reply to Tracey C's 5-22     stopping meds & more
 
Jon's 5-23 reply to Tony T's 5-23     stopping meds
 
Michael 5-23     how long will I live?
 
Jan 5-23     please explain the term "heart failure"
 
Jon's 5-23 reply to Jan's 5-23     first,...,
 
Maura 5-23     intro
 
Jon 5-23     sorry for delay
 
Jack D's 5-24 reply to Joshua's 5-22     hyperbaric therapy
 
Jon 5-24     AHA and hyperbaric therapy
 
William B 5-24     stress test names
 
Karen K's 5-24 reply to Joshua's 5-22     hyperbaric therapy questions
 
Dee L 5-24     wheezing episode scared me
 
Jon's 5-24 reply to Dee L's 5-24     being proactive rather than reactive
 
Donna H 5-24     does anyone else get these upper back pains?
 
Pat F 5-24     seek opinions about waiting for future "event"
 
Pat A's 5-24 reply to Joshua's 5-22     hyperbaric therapy questions
 
Sharron W 5-24     seek suggestions on relief at work
 
Jon 5-25     still waiting to upload posts
 
Maxine S 5-25     has anyone had this type pacer/ICD implanted?
 
Phyllis A's 5-26 reply to Lisa's 5-21     adriamycin caused CHF experience
 
Joshua 5-26     open to discussion on hyperbaric therapy
 
Joe S' 5-26 reply to Dee L's 5-24     and to Jan
 
Dorothy's 5-26 reply to Christy P's 5-23     Disability and faulty memory
 
Pat F's 5-26 reply to Sharon P's 5-23     enjoyed your kitchen experience
 
Jon 5-26     page updates
 
William B 5-26     seek drug name
 
Jack D's 5-26 reply to Joshua's 5-26     hyperbaric oxygen therapy
 
Amelia 5-26     intro
 
Bob N's 5-28 reply to Lisa's 5-21     adriamycin caused CHF
 
John Len's 5-28 reply to Sharron W's 5-24     Americans With Disabilities Act
 
Susan D 5-28     sleep apnea results & attitude
 
Dee L's 5-28 reply to Jon's 5-24     atrial flutter episode & more
 
Jon's 5-28 reply to Dee L's 5-28     transplant question
 
Mike W's 5-28 reply to Wendy B's 5-23     husband part of the problem, maybe?
 
Tonya Dean 5-29     what should I ask my doc?
 
Amelia 5-29     seek amiodarone (Cordarone) info
 
Jim 5-29     seek Aldactone and back surgery experiences
 
Tonya Dean 5-29     seek St. Louis, Missouri support group
 
John Len's 5-29 reply to Susan D's 5-28     online sleep apnea forum
 
Sarah F 5-29     back home for now, update
 
Sharon P's 5-29 reply to Amelia's 5-29     amiodarone experience
 
Linda McAuliffe 5-31     questions about stopping Coreg
 
Jon's 5-31 reply to Linda McAuliffe's 5-31     stopping Coreg
 
Claire 5-31     PPCM and cardiomyopathy questions
 
Ophelia 5-31     Natrecor
 
Michael 5-31     does anyone get extremely dry, flaky skin?
 
Bruce 5-31     can't more be done for me?
 
Cristina L's 5-31 reply to Amelia's 5-29     amiodarone side effects - have questions too
 
Amelia's 5-31 reply to Sharon P's 5-29     amiodarone
 
Ruthie A's 5-31 reply to Jim's 5-29     back surgery with CHF experience
 
Chirsty 5-31     seek advice on weight gain since CHF


Pauline B, May 16, 2001 - Hi, I was diagnosed with DCM and CHF nearly two years ago in the UK. I am currently taking 15mg Lisinopril twice daily and my prof wants me to try taking a beta-blocker again. I tried Coreg last year and spent most of my time on it in tears, gained weight and went into heart failure, so I came off it. One of my main concerns is that one of the side effects might be a dampening down of my keen and treasured spiritual awareness. I appreciate that beta blockade is a very good means of prolonging our lives but I also believe that the cure should not be worse than the condition. Does anyone have any reassurances for me regarding side effects? I am to start on a very low dose of a different type of beta-blocker in a couple of months time. chloe276@aol.com


Robin Lynn, May 16, 2001 - Hiya Ben, Thank you for replying to my post. I am not offended in any way. I did ask. Yes, I have been wearing a loop type monitor for close to 3 months now, which pretty much has me knowing what the different arrhythmias feel like. Wearing the monitor has informed us that I have sinus tachycardia that sometimes is inappropriate. I am still having runs of PVCs that don't feel too good but it's the v-tach that gets me. I had 8 brief runs yesterday, all under one minute, with an average heart rate of 168 during and 125 resting. My EP and cardio-doc are both opposed to antiarrhythmic drugs due to side effects and my age (37) so my EP doc doubled my beta-blocker.
     I have not mentioned to either of my doctors the thought of an ICD. I asked you guys first. ;-) Even the brief runs bring on awful fatigue and major headaches. The worst part is knowing that with a hole in my heart and coupled with cardiomyopathy, my SCD risk is higher. I cannot deny that it does scare me a bit. I guess I wanted to know if I sound paranoid.
     Jon, you got the exact right impression of what I am talking about. At 14,000 dollars US, he has a good reason to look at me, smile, and say let's do it again. Another thing is that I had a right outflow ablation and now every EKG says, "right ventricular conduction delay." I don't know how significant that is but it sounds like the electrical current at the ablation site is not quite getting through. I don't want anyone to get the idea that I am afraid of dying. I think it would be quite heavenly and much easier than living. But like I said before, my girls are 5 and 9 and the thought of anyone else raising them just sends chills down my spine. I have a lot of faith and I know that God will watch over them and me. I do not however, copletely trust these doctors anymore. I am still looking for a few good ones and I watch everything they do and don't do.
     I went to my internist yesterday and she aked me if they were gonna implant an ICD. How funny she asked! Thank you both for taking the time to give me your thoughts on this. God bless, Robin Lynn. Heartful99@hotmail.com
 
Jon's note: For what it's worth, I am not sure an EKG is ever normal again after you have had an ablation.


Jon, May 16, 2001 - Hi guys, What's the preferred knot for occasions that are formal but not tux-formal? Windsor, half-Windsor or Shelby? Shirt collar is fairly wide but not extremely so. Suit conservative single-breasted. Suggestions appreciated. I haven't worn a suit in maybe 6 or 7 years! Jon.


Gwen Sanders, May 17, 2001 - Hi, I have had CHF and DCM for 3 1/2 years now and am fairly stable. I am looking to have gastric bypass surgery since I am more than twice my ideal body weight. I was wondering if there is anyone on this site who has had this done while having CHF or if anyone has talked with their doctors about the possibility. I think this is my only hope of maintaining a normal body weight. I have so many complications due to this excess weight that I think the benefits far outweigh the risk. My EF is 26 and all my chemical levels have been stable for over 2 years. I have been under general anesthesia twice since being sick. Thank you for any help. gwenddot@aol.com


William B, May 17, 2001 - Hi, I just got back from the university clinic and the result from the MUGA and Dennison stress test. The doc ruled out any operation at this time. I would get a 7 to 8% benefit from a bypass; only one artery would be able to be bypassed because the rest have ghosted out. The operation risks are 8 to 12% so the risks outweigh the benefit. In the fourth week on the minimum dose of 3.125mg of Coreg, my BP dropped a little but the bottom usually drops out in the late evening anyway.
     I noticed in a CHF newletter I get that there is a machine out to use at home to monitor INR. Is anyone using this at home? It is really tiresome to sit for 45 to 60 minutes just to get my blood tested. William B. willdet@juno.com


Autumn's May 17 reply to Stephanie's May 14, 2001 - Hi Stephanie, I have memory problems too and problems with concentration. I can lose my line of thought in an instant. For the memory problems I make lists. Without lists I would be lost. Also, I have problems learning new information so I need to go over and over the same material to learn it. The neurologist says mine is from long-term medications. It is frustrating and discouraging at times but I have had these problems some time now so it is like a normal part of my life. I worry at times because it has gotton somewhat worse over time, but I'm managing it okay. If it gets bad enough that I really need to worry, I won't remember what to worry about. <g> I know you'll find ways to manage that work for you. I hope I've helped a little. Take care, Autumn. AmberDawn-Blzn@webtv.net


Autumn, May 18, 2001 - Hi everybody, I just got out of the hospital after a 2 day visit. I am hypercalcemic again and my bowel quit working. Also, they told me that peripheral neuropothy slows down the contractions of the bowel. I had severe vomiting for about 12 hours and developed a bacterial infection from vomiting small bowel contents. This has caused problems with my bile ducts even though my gallbladder has been removed.
     I learned that one of the tests my neurologist wants done is a $500 test for a certain type of lung cancer. It is not a common test and insurance will not pay for it. I've learned that hypercalcemia is often caused from cancer and that those patients usually die from the bowel problems before the cancer. My neurologist will need to decide if he wants to follow up with this test and they will be deciding on pain control for my hip and muscle pain. When I went to the hospital, I thought I was having a heart attack but thankfully my heart is doing okay and does not appear to have been affected from the bacterial infection. Will I need to keep an eye out on this for awhile?
     As I face these serious health issues, life becomes ever more precious. I realize I don't have a choice in how long I am on this earth but I do want to make it as long as I possibly can. I need to further prioritize how I want to spend my time and energies. Some things just are not as important as they once seemed. I am hoping my doctors find some other explanation but I know things do not look good. I need to make a will just in case but otherwise just live life the best I can. Please keep me in your prayers, Autumn. AmberDawn-Blzn@webtv.net


Ginger's May 18 reply to William B's May 17, 2001 - Hi, What does "ghosted out" mean? Also, everyone please keep up the prayers for Sarah F. She is still in the hospital waiting to get a surgery date at the Cleveland Clinic. Please also pray for Joy because she is still having it rough recovering from her surgery. Thanks you all. Hugs and prayers, Ginger. angelgin@bellsouth.net


Alexis A, May 19, 2001 - Hi Gang, This is a great board. I read it every day and learn more about CHF all the time. Knowledge is power! I have a couple of questions. If anybody has any information or opinions I would appreciate your input.
     It sounds like many of you no longer work. How will I know when it's time to start looking at Disability as a real option? My doc has indicated I am between class one and 2, and my EF is 25%. I feel good (almost normal) about 50% of the time and feel fatigued and just "off" the rest of the time. My doc says I can go back to work in a week or two but I'm not sure I want to or that I am ready to do so.
     On an unrelated topic, my partner has fibromyalgia. Does anyone know of a site like Jon's for that disorder? Asmth@aol.com


Mary Lou's May 19 reply to William McChargue's May 15, 2001 - Hi William, I have never used this product so I know only what I have read about it at the seller's site, which is http://www.lifeplusvitamins.com/corrects.htm. They claim that it has no potassium. It does, however, have magnesium. It is pricey. A a 6 oz Trial Shaker is $7 and a 26 oz Bulk Pak is $15.50 US. Good luck! If you do try it, let us know how it is. <g> Mary Lou. MLBinks@aol.com


William B's May 19 reply to Ginger's May 18, 2001 - Hi, "Ghosted out" refers to the collapse of a blood vessel into itself, when it will not take a stent to keep it open. This was caused by the stubbing off of the artery. This is believed to be caused by some form of viral attack. Both sides of my heart are damaged and I just happen to have a unusual combination of ischemic and non-ischemic problems. The only list that the doc said I will get is on a transplanr list. This combination has created a little interest and caused a lot of testing. William B. willdet@juno.com


Ginger, May 19, 2001 - Hiya's, Sarah F wanted me to say hi to everyone and tell them she misses them. She misses chat an even Tom W. <g> Anyhow, her situation has changed somewhat. She is still in the hospital waiting to be transferred but not because of a surgery date now. They are waiting for a bed on the floor she needs to be on. They are going to re-run a few of her tests. Depending on how the tests come out, if they think the surgery won't do much good, they are talking about putting her on the transplant list. She did get a laptop and if they allow it at Cleveland Clinic, she will get to be on at times. Since she asked me to keep her friends updated, I will do it through posts since it is much easier then e-mails, mainly because I don't know all of them. If she does have to go on the transplant list, we don't know yet if she will be allowed to wait at home. I sure hope so. Stay well y'all and please keep Sarah in your prayers. Hugs and prayers, Ginger. angelgin@bellsouth.net


Julie G's May 19 reply to William B's May 17, 2001 - Hi William, I don't want to appear to ignorant but what is a Dennison Stress test? Thank you for your patience and May God keep you in His palm, Julie G. lgoehl@dstream.net


Walter K's May 19 reply to Mary Lou's May 19, 2001 - Hi Mary Lou, I looked at the site pushing the "corrected" salt. I think it is a lot of snake oil. Thanks for posting the address because it might have been something good for us CHFers. However, although I am not a medical person, I am a retired Ph.D. chemist and can speak with authority on some of their claims. Sodium ion is hydrophilic, which means it clings to water molecules. This is what causes fluid retention and the presence of magnesium is not going to change that. They say their product contains elemental magnesium, which it doesn't (elemental means the metal form of magnesium so you wouldn't want it to anyway) because they go on to describe the salts of magnesium that it really contains. Sea salt is just as bad for you as regular salt, so ignore their statement on that. I strongly urge anyone to check with their doc before using this stuff. In the meantime, does anyone know of a good salt substitute? hknoth@magpage.com
 
Jon's note: Hot peppers!


Dale Chambers, May 19, 2001 - Hello Everyone, Our God is an awesome God! Last Monday night Ann got her new heart. It was truly a miracle since she had been given a week to live, a week prior to last Monday. She was on 1A status. I want to thank everyone for their prayers, which were heard. Yesterday she was up walking and has been given a regular diet. Her cardiologist has told us that she got the Cadillac of hearts. Again, Our God is an awesome God! Shomeekatz@aol.com


Jon P, May 21, 2001 - Hi, I have noticed in the past there were several posts recomending that CHFers should not fly. Can anyone tell me why? Next month I have to go about 1100 miles. Would it be better to drive? It would be 2 days driving. Should I just forget it altogether? I used to travel a lot but since CHF I have not tried more than one hour of driving and have not flown at all. Any info would be very helpful. Thanks, Jon P. jon.parker@att.net


Jon's May 21 reply to Jon P's May 21, 2001 - Hi Jon, There is a fairly extensive page on CHF and traveling by air (and more) in the CHF FAQ. Jon.


Jack D's May 21 reply to William McChargue's May 15, 2001 - Hi William and Walter, There is a salt substitute. It is called sour salt or citric acid crystals. You can buy it at any health food store and you can buy it online. It's not really a salt but it works in the salt shaker. It has a sharp bite that fools your taste buds when you use it on food. It doesn't fool them when you just put it on your tongue though. It's especially good on chicken, pork and fish. Jack. maddjak@hotmail.com


Bob N's May 21 reply to William McChargue's May 15, 2001 - Hi William and Walter, A good salt substitute is called "No Salt" and is distributed by RCN Products Inc, 5 American Lane, Greenwich, CT, 06831. This seems to be in most supermarkets. Good luck. bignick42@aol.com


Debra's May 21 reply to Dale Chamber's May 19, 2001 - Hi Dale, Please tell Ann that I am glad she is up and about after getting her new heart. My prayers are with her and your family. God bless and take care, Debra. Please keep me posted on her condition. lcaple@bellsouth.net


William B's May 21 reply to Julie G's May 19, 2001 - Hi Julie, The name Dennison stress test was used to describe to me the chemically-induced stress test on my heart instead of running on a treadmill. I had my running shoes on and was ready for the treadmill but with an enlarged heart and damage to both sides, the doc would not let me run the treadmill. With my hearing as bad as it is I hope this is the right name for it. Sometimes what I hear is not what was said. Maybe different names at different areas. I have ran into that several times. William B. Willdet@juno.com


Jon's May 21 reply to William B's May 21, 2001 - Hi William, You are right. Many heart tests are called by different names from one hospital to the next, and even from one department to the next in the same hospital. It's a rather large failing in the medical community that they do not standardize test nicknames, only the technical names. Jon.


Tracey C, May 21, 2001 - Hi everyone, I am wondering how many of you have abnormal heart wall movement. I ask because I was under the false impression that having cardiomyopathy meant that you did. I've since met people who have a reduced EF but their wall movement is normal. Mine is not and I wonder what that could mean. I also have an appointment with my doc next month. I haven't felt as good off meds as I did on. I hate to think about going back but obviously something isn't right. Take care, Tracey. 2tcollins@home.com
 
Jon's note: If your doc took you off all CHF meds, you need to get a different doc right away!


Lisa, May 21, 2001 - Hi, I was diagnosed with CM and CHF in February of this year. My doctor says that I have adriamycin induced cardiomyopathy. Is there anybody out there who has been diagnosed with the same thing? I have found only one person but her doctor thinks it was caused from a virus. Does anyone have any imformation on adriamycin induced CM? My doctor does not sound too positive about my prognosis. Take care and God bless everyone, Lisa. Johnlisa@the-i.net
 
Jon's note: have you checked Me Too?


Debra C's May 21 reply to Stephanie's May 14, 2001 - Hi Stephanie, I have CHF and LBBB. I am now going into my second year of this. My doctor tells me it is the medicine I am taking that causes memory loss. I keep a note pad on my desk and write down the things I have to do for the week. I write down appointments on my calender. Have you had any hair loss? Again, my doctor says it's my metoprolol. Debra. lcaple@bellsouth.net


Ben B's May 21 reply to William B's May 21, 2001 - Hi William, Is it possible the test is called the adenosine stress test? This sounds like dennison, and may be mistaken if not spelled out. bdbrinkman@juno.com


Ben B's May 21 reply to Tracey C's May 21, 2001 - Hi, This is actually a comment on the practice of switching doctors. I wasn't going to comment on this subject because I seem to get in hot-water over it, but here goes: In this case, it probably is advisable to look into different doctors if your doctor isn't prescribing at least an ACE inhibitor or at least to ask your doc why. Maybe there is a good reason that none of us knows. After all, none of us has an MD or has examined you.
     I'm assuming this is the doctor who got you to the point you are now, which means he has done pretty well so far. There are cases when doctors are incompetent and need to be switched but to get some notion of what your treatment ought to be by reading a book or something on the web, and then keep changing doctors until you find one that will conform to that notion, is tantamount to treating yourself. I know some people who do this. I am not saying you are doing this, I'm just advising caution. bdbrinkman@juno.com


Ginger's May 21 reply to Tracey C's May 21, 2001 - Hi Tracy, I would be a little nervous too. My heart doc lowered all my meds down to almost nothing when I was stable at an EF of 56% for 2 years. Six months later my EF dropped to 40%. I am now back on all those meds and in some cases at higher doses then I was before. So please be leery of going off the ACE inhibitor at least. I thought that was one we would always have to take even being stable. I know I will never agree to let him take me off or reduce my ACE inhibitor again the way he did. (Jon's note: It is to be taken for life. See Dr. Silver's answer to Robin L from last week)
     Now for an update on Sarah F: She is at Cleveland Clinic and was put in the cardiac unit. They decided to move her over to the heart transplant unit to have her evaluated. As the news comes in on how hre evaluation turns out, I will let you all know. Please keep her and her 2 kids in your prayers. I know this must be so rough on her kids to deal with. She is a little over an hour away from home and where her kids live also. Her kids are not really kids but to parents I think they always are. ;-) Stay well y'all!
     Dale, I am so happy for Ann that she got a heart. It is wonderful to hear things like that. Hugs and prayers, Ginger. angelgin@bellsouth.net


Mary Lou's May 21 reply to Walter K's May 19, 2001 - Hi Walter, Thanks for the information you supplied about that "snake oil." <g> As I said, I had no information other than that given by the manufacturer and they, of course, would have only good things to say about their own product so your input was most welcomed. Thanks again, Mary Lou. MLBinks@aol.com


Vee's May 21 reply to Pauline's May 16, 2001 - Hi Pauline, I was interested in your post and a lot of the other recent ones about memory loss and meds. I've never taken Coreg but I've been on metoprolol for about 2 1/2 months now and unfortunately don't have much good news to share about my beta-blocker experience. I suspect it's just the nature of the beast and people vary in their susceptibility to certain of the effects.
     On the positive side, the metoprolol greatly slows my heart rate, which is a good thing in my case, and it hasn't caused me undue fatigue. However, it's been really hard to pay attention and get work done that requires much cognitive function and mental alertness. I feel spacey and drugged much of the time. Yuck. I cut back on my daytime dose and that's helped a bit. I was hoping I'd eventually get used to the stuff but it doesn't seem likely going by what others are saying about experiences with memory loss.
     I'm with you. I don't think the treatment should be worse than the condition! Quality of life issues sometimes outweigh long-term benefits and there are never any guarantees for the latter. I feel like a wimp but I'm planning to give it one more month and then renegotiate meds with my doctor. I'd be interested to hear if you have better success. It's certainly worth a try and you might do alright, especially at lower doses. maize2001@hotmail.com


Vickie K's May 21 reply to William B's May 21, 2001 - Hi, I believe the stress test you referred to is the adenosine stress test named after adenosine, which is injected intravenously to stimulate your heart in place of walking on the treadmill. vkane@mediaone.net


Autumn, May 21, 2001 - Hi everyone, I didn't get any response on my May 18th post. I am concerned whether there is a risk of the bacterial infection I had from vomiting the contents of the small intestine settling in my leaking heart valves. My GP says no but I no longer trust him because he brings up serious issues like cysts or lung cancer, then refuses to discuss or explain them with me. He tells me to have the neurologist go over it with me but the neurologist's nurse said they sent a 3 page report to my GP and he is supposed to go over it with me.
     Personally, I don't think I have lung cancer but that it was simply an option the neurologist was looking at. I am frustrated to tears trying to get an answer. I am taking your advice Jon, and firing my GP. I am going to get copies of my files here and I will now need to go 80 miles for a PCP in our group plan. I already go 80 miles for my cardiologist and neurologist. It will be harder to have general health care 80 miles away but it will probably be worth it. In October I can switch plans and access a doctor again locally but please, could someone tell me if I am facing risk to my heart valves from the bacterial infection. Thanks, Autumn. AmberDawn-Blzn@webtv.net


Jon's May 21 reply to Autumn's May 21, 2001 - Hi, I believe this is one that really does require a doctor to answer. You can try the Cleveland Clinic cardiology message board, run through medhelp, at www.medhelp.org/perl6/cardio/wwwboard.html. Jon.


Jon, May 21, 2001 - Hi, Karen K sent in a salt substitute recipe that I added to the salt subs listed at Let's Cook! under "condiments." Jon.


Jon, May 22, 2001 - My wallpaper page has been updated. Jon.


Autumn's May 22 reply to Jon's May 21, 2001 - Hi Jon, Thanks for your suggestion. I will search their archives there and post my question. I don't know what I'd do without this site. I learn so much, both medically and spiritually, from you and everyone else here on Jon's Place. Thanks again, Autumn. AmberDawn-Blzn@webtv.net


Claire E, May 22, 2001 - Greetings, Good heart days and peace to all who read these words! I went to my cardioguy and had my yearly echo last week. He proclaimed me stable for the time being. After 3 1/2 years of a downward spiral, sometimes slow sometimes not, I am so thrilled and happy I just can't express it! Our goal is to maintain this current level of cardiac function and quality of life for as long as we possibly can. He said if I can do that, he will be very, very pleased. Well, I sure aim to try - wish me luck, guys! I just need to be a good girl and not overdo it and get all spastic over the small stuff. I'm sure you all can relate.
     On the subject of memory loss, mine really stinks. Lists and notes are a huge part of my life, providing I don't misplace them, which I often do and then I get super-frustrated. I also leave myself visual clues everywhere: library books to be returned on the table by the front door, underneath my purse and car keys, you name it, I try it. My dog takes glucosamine for arthritis. It's a capsule that has to be opened and sprinkled on his food. I leave the bottle inside the bag of dry dogfood so I can't miss it when I go to feed him. Needless to say, I have set it down while I mixed his supper and still forgotten, but not too often. <g>
     I am totally neurotic about checking to make sure I have my keys before I lock the car. We all know how ugly that can be. Usually my family just gets a good laugh at my expense, which is fine with me. There is not enough laughter in life anyway. Once in awhile, it gets me a little down but not too often. Of all the symptoms CHF has dealt me, this is on of the most bearable, at least to me. If I am having a really bad heart day when I literally can't concentrate at all and I can't remember whether to stop or go at a green light, I have learned to stay home because when it's that bad I know something is very wrong and to be out alone is to be a danger to myself and others. I'm afraid I'll cause an accident. If it's that bad I'm on the horn with my doc anyway. I am affectionately known as "Cabbagehead" around my house. I could think of many worse nicknames. Be well, my friends. Peace and love, Claire E. weezey62@aol.com


Joshua, May 22, 2001 - Hi, I don't post very much but do read what is posted, mostly relevant to medications. It may be of interest to some that the American Heart Association is now reccomending hyperbaric oxygen therapy for CM and heart failure. Those of you interested may access www.hyperbaric-forum.com for further information. HBOT is a complementary therapy to meds, simply enhancing the effects of both.
     So far, it will not help a clogged eustachian tube. If anyone knows how to fix that, I'd appreciate a reply. jatilton@tilda.ws


Tracey C, May 22, 2001 - Hi everyone, Thanks for the responses. I am still on an ACE inhibitor, just off Coreg and digoxin (Lanoxin). I go in Thursday to see the doc since my chest pressure and armpit/chest pains are back now that I'm off the meds. It's only been about a month. Could it just be withdrawal from meds? I have clear arteries so I don't understand the chest pain and as good as my doctor is, he chalks it up to being all in my head. Then again, he tolerates my monthly calls to him. I hope everyone has a great holiday, Tracey. t2collins@home.com


Wendy B, May 23, 2001 - Hey, Has anyone else had trouble getting their family to pay attention? I'm only class one, so my symptoms are pretty mild but I work full-time, then I come home to cook dinner and oversee homework. While I'm doing that, I usually throw in a couple of loads of laundry and do some ironing. After dinner I try to get around to the dishes. If I don't, then I get up the next morning and fill the dishwasher while getting my daughter up for school and probably throwing another load in the laundry (it's a small machine <g>). My husband only works sporadically so he's usually still asleep. Then I go to work and,..., you get the picture. I clean house on weekends, of course.
     Can anyone but me see the problem here? How on earth can I get it across to them that even if I don't look or act sick - except for all those meds on the kitchen table - I get awfully tired these days? Does anybody else have this problem? Gotta go, another load just came out of the drier and I've got to get that bathroom clean! ;-) boozw@hotmail.com


Christy P, May 23, 2001 - Hiya folks, I need some input from those of you that have increased EF and are on Disability. I got some good news today. At my doc visit today, my echo showed an improvement from 20% last year to 25 to 30% this January to 45% today, and a left ventricle that is not enlarged. The doctor directly attributed it to the fact that I've changed my diet to very low fat, low calorie and low sodium intake, continued with my walking program, and have lost 15 lbs since January.
     All my delight at having such dramatic improvement has been clouded over by a concern about chances of losing disability with either SSD or UNUM. I'm certain that my heart improvement is directly related to my concentration on diet, exercise and rest (lots of rest). My doctor and I agree that I'd probably fall on my face pretty quickly if I went back to work and the stress that was so much a part of my job. Has anyone had problems with their insurance company or with SSD disagreeing with your doctor maintaining disability even with a higher EF? I'd love to hear anyone's experiences. Thanks in advance. breezip@hotmail.com


Wendy B, May 23, 2001 - Hi, I just wanted to let you know that my bathroom is sparkling, and I don't think I'm going to need my Ambien tonight! <g> boozw@hotmail.com


Sharon P, May 23, 2001 - Hi, One good thing about my lack of memory and concentration is that my husband doesn't allow me in the kitchen anymore. While he was out of town last week, I tackled chili. How hard could that be? Well, I got it way too hot because I forgot I had put in the chili powder and then proceeded to put it in again. Since I then ran out of chili powder, I substitued red peppers. Bad move. To rectify the situation I rinsed the meat off and tried again. The result is that my husband has all but put a lock on the kitchen door. Blessings, Sharon P. sparker103@home.com


Stephanie, May 23, 2001 - Hi everyone, I didn't want to forget to say thanks to everyone who replied about memory loss. It was a real encouragement. You are great. Thanks again, Stephanie. moodystephanie@hotmail.com


Tony T's May 23 reply to Tracey C's May 22, 2001 - Hi Tracey, I've tried to reduce my digoxin (Lanoxin) from 0.25mg to 0.125mg and have suffered from a tight chest within 24 hours, so I gave up trying. In fact, right now I'm trying to reduce my verapamil and it is torture. If I cut the dose too much too soon, I suffer from strong, erratic and continuous palpitations, a tight chest, chest pains, and and an overall junky, weak feeling. I've found that I've got to reduce the Verapamil dosage by about 6% for a five day period before I can reduce it again. I've always been envious of others, who can stop taking a heart medicine without serious withdrawal symptoms and side effects.
     You say that your doctor tells you that your symptoms are all in your head? When I hear that, I lose more faith in our medical system. Doctors never want to admit that they don't know or that they are wrong. HMOs make more money by not treating patients. So, if a doctor can slough off a patient's symptoms by saying that it is all in the patient's head, he can spend less time on that patient and more on his golf game. Most diseases can be made worse by tension and pressure but in my opinion, the underlying diseases are usually caused by real factors. Saying that a patient's symptoms are only caused by psychological problems is a cop-out and is a sign of ignorance. t0nyt@yahoo.com


Jon's May 23 reply to Tony T's May 23, 2001 - Hi Tony, I'm sure you are working with your doctor on reducing drug dose but wanted to comment for other readers' sakes. Certain heart meds are extremely dangerous to stop, so a doctor's oversight is critical to preventing further heart damage or events - simply because he has "practice" recognizing when a symptom is significant when stopping a certain med. Calcium channel blockers and beta-blockers fall into this category.
     Tony, if you have seen someone suddenly stop such a drug, they could be risking their life. My own CHF doc tore into me once when I was short of money for filling prescriptions. He'll get me free meds in the meantime if necessary but severely warned me against stopping any heart meds suddenly. He was dead serious - it's the worst scolding he has given me in 5 years of treatment. Jon.


Michael, May 23, 2001 - Hi, I was diagnosed with cardiomyopathy about 5 weeks ago and I am wondering how long it typically takes for a doc to give you a prognosis. I'm currently on 7 different meds. This seems like a lot to me. When I was first checked into the hospital, my EF was 16%. This seems awfully low to me, although I'm sure it has improved by now since I've felt great since I was released from the hospital about 2 weeks ago. I see my cardiologist tomorrow and I have a lot of questions once again. I also see a GI doctor on Friday to determine why my liver function was so high while I was hospitalized and if it is still high.
     Sorry I'm rambling but I have so many questions and without a definitive prognosis, I feel that I have a very limited amount of time to ask them. I mean if I've only got a year to live I'd like to know so that I don't waste my time on frivolous things like worrying about my health. anthrophobe@usa.net
 
Jon's note: Please read this page


Jan, May 23, 2001 - Hi, Not to get too deeply into semantics but please someone explain to me if a person has congestive heart failure once diagnosed, forever? Do we walk around with heart failure all the time? I hear people say they "have" heart failure, and I also hear people say they had an "episode" of heart failure which hospitalized them or they "went into" heart failure. Is this a variation, or degree thing? I'm confused. My doc diagnosed me with class 2 CHF, then my new primary care doc asked if I am currently in heart failure. Somebody clarify, please. Thanks, Jan. therowlands@att.net


Jon's May 23 reply to Jan's May 23, 2001 - Hi Jan, I will be happy to explain but before I start typing, please let me know if I did a poor job explaining this in The Manual. I am always rewording it, trying to make it easier to understand. Jon.


Maura, May 23, 2001 - Hi, I was just introduced to your site this evening after asking about my ejection fraction on another site. My name is Maura, I am a 36 year old mother of four. I found out I had CHF and dilated cardiomyopathy when I went to Johns' Hopkins because I thought I had the flu. My EF was 20%. One year and a million procedures later, no one knows why I got sick. My EF is up to 50% on Lasix, Coreg, and Captopril. I read your CHF and cardiomyopothy info, thank you. I don't know what to ask, I am just glad there are others available. I don't look sick to those around me but sometimes I feel so bad. Maura. garyfarrall@aol.com


Jon, May 23, 2001 - Hi everyone, I have an FTP problem which prevents me from putting these posts up until probably Thursday evening. Sorry. Jon.


Jack D's May 24 reply to Joshua's May 22, 2001 - Hello Joshua and others who might be interested in hyperbaric treatment, Hyperbaric medicine is also referred to as dive medicine. You have probably seen movies where divers get the bends and are put into a big pressure chamber. That's the hyperbaric chamber. Hyperbaric oxygen therapy puts the person in 100% oxygen under pressure for up to 2 hours per treatment. The American Heart Association is not recommending hyperbaric oxygen therapy for anything. The treatment is used for problems like carbon monoxide poisoning, cerebral arterial gas embolism, decompression sickness, exceptional blood loss anemia, some dead tissue infections, gas gangrene, crush injury complications, reattachment of limbs, peripheral ischemia, thermal burns, and other asorted health problems. Any other use is probably experimental. Remember that oxygen under pressure is toxic and this therapy can be dangerous, even though you can buy your own chamber and do your own treatments. maddjak@hotmail.com


Jon, May 24, 2001 - Hi, I checked the American Heart Association web site via their own search function. The only place I find hyperbaric therapy mentioned at all is in connection with stroke, at www.americanheart.org/Scientific/statements/1994/099401.html. That document states:

"Hyperbaric oxygen therapy may be useful for the occasional patient with stroke secondary to air embolism or Caisson's disease; its role in the general treatment of acute ischemic stroke has not been adequately tested,..., There is general agreement to recommend supplemental oxygen to hypoxic patients (Levels of Evidence III through V, Grade C). There are insufficient data about the efficacy of hyperbaric oxygen to recommend this therapy for most patients with stroke."

I did not look into hyperbaric therapy otherwise, since I see no currently plausible connection to heart failure treatment. Like oxygen supplements in liquid, I see no adavantage to it over standard oxygen supplementation in gas form - all are temporary fixes to acute oxygen shortage in the body rather than a long-term correction of anything. Then again, I'm just a retired cabinetmaker. ;-) Jon.


William B, May 24, 2001 - Hi, I asked my heart doc today about name and spelling of that stress test. He said the test is sometimes called by different names. It seems outside the pure medical name of something there will be differences in different areas; Same test and same result: different handles. This difference in name is not only in smaller tests but the larger and more complicated tests. You guys have a safe and a good heart holiday. William B. willdet@juno.com


Karen K's May 24 reply to Joshua's May 22, 2001 - Hi Joshua, I accessed the web site for hyperbaric therapy and wasn't able to find information on hyperbaric treatment as an adjunct therapy for those with cardiomyopathy and CHF. Can you possibly give more detailed information? Where did you find the AHA guidelines that indicate they support this therapy? Thanks for any info you might have, Karen. karenk@machllink.com


Dee L, May 24, 2001 - Hi, This past Monday evening I was wheezing so badly I ended up in the hospital. I know wheezing is a common symptom with heart failure but did not know that it can happen so quickly. I was wheezing Sunday evening whenever I would lie down on my left or right side. Monday evening after working all day and going out for dinner with friends, I got home around 7:00 PM and laid down to rest, when I started wheezing badly. I thought maybe it was from allergies since buds are dropping off the locust trees around my house.
     Anyway, I sat up and my wheezing got quicker and louder. As I stood up, I could not catch my breath. I called 911 and they sent an ambulance. My cardiologist met me at the emergency room and admitted me to CCU. He said I was in atrial fibrillation and they drained 8 liters of fluid before releasing me the next day. I am home resting but am still very weak. I saw my doc yesterday and he says my lungs are clear. Now I fear having this happen again. It comes on so suddenly. I could not get my breath. Do these symptoms happen with heart failure each time you go into it or just with atrial fibrillation? The only other time I wheezed was a couple of years ago when I was on zestril. They changed that and I haven't had wheezing until now. Thanks for listening. I am frightened to be alone and dreading if this should happen again. deedurham@webtv.net


Jon's May 24 reply to Dee L's May 24, 2001 - Hi Dee, Honestly, this doesn't sound like it happened all that quickly, as it might with "flash" pulmonary edema, which happens inside a half-hour start to finish. Yours started Sunday and then you worked all day the next day and went out to eat (I wonder if you ate low sodium?). This means you weren't really listening to your body. Wheezing is a sign that your heart is not handling its load and you are getting edema.
     Did you weigh yourself each morning, to track weight gain due to fluid build-up? That would warn you to call in sick to rest, take extra diuretic, or call your doctor before it reached the point it did. These little routines - weighing yourself each morning, eating low sodium food every meal, listening to your body when a symptom rears its head - allow us to carry on our lives without fear because it lets us be proactive rather than always reacting to emergencies. This may sound harsh but I think you need to read The Manual again and go through the CHF FAQ, and if you are not following these parts of the program, give them a try.
     If you are following these suggestions and still have this problem, you may have to consider whether you can continue your current work schedule, whether your doctor is on top of your treatment, whether you need additional meds or a meds adjustment, whether your exercise program is too tough and is wearing you down, whether you need to consider limiting your fluid intake to 2 liters per day, etc,...
     If you tackle all these steps and still suffer increasing symptoms, you also may have to request further heart function testing to see if your cardiac output has gone down. Jon.


Donna H, May 24, 2001 - Hi, I want to know if anyone else experiences pain in the top part of their shoulder blades in their back. This is worst when I am walking. I asked the nurse during my last CHF treatment and she said that it is probably just because my heart is not pumping correctly. I try to get my walking in like I am supposed to do but it sure is difficult when I am having these pains. Thanks for any replies, Donna H. donna.horzempa@redstone.army.mil


Pat F, May 24, 2001 - Hi everyone, This is the first time I've posted although I've been reading many of your communications since February, when I was diagnosed with DCM and CHF. Thinking I had bronchitis, I visited the Wellness Center where I work to see if I could get an antibiotic for the chest congestion I was experiencing. A very astute PA listened to my chest and immediately ordered an EKG, which was compared to another one from 2 years ago. The change was astounding. Within minutes I was in an ambulance heading to St. Joseph's Hospital in Atlanta. In a matter of days and after numerous tests it was determined that I had DCM, a weakened left ventricle, and an EF of 18%; probably caused by an unknown virus. I had never been ill in my 57 years, rarely even had a cold, and now this.
     I have always been, and continue to be, upbeat and positive. After the initial shock of my diagnosis wore off I had a short period of depression but I feel quite good. After some juggling of meds over the last few months, (I can't take digoxin (Lanoxin) because it really makes me nauseous) I'm settled into a daily regimen of 20mg Zestril, 25mg Coreg BID and furosemide.
     I've read Dr. Silver's book and everything else I can get my hands on concerning this disease. I guess what I've gathered is that most of us are different in symptoms experienced and causes of our disease, but many things are the same. Because I feel so well and the medication seems to be keeping me stable, I'm wondering what event will occur to make me very sick again. This probably sounds naive but how will I know when I'm sick? Will I pass out from lack of oxygen? Will I be congested no matter how much Lasix I take? Or my greatest fear is that my heart will simply stop.
     I know that none of you have the answer but many of you have had CHF for a number of years and have been hospitalized more than once. The feeling I have of walking around waiting for the other shoe to drop is what bothers me the most. I am aware of every little twinge in my chest and am convinced that I can "feel" my heart laboring but my cardiologist says that I'm imagining this since my arteries are clear.
     Does anyone have similar feelings? I've been reluctant to post my thoughts because so many of you have many more health issues than I do. However, this site has been so helpful to me in learning about CHF that I thought I'd take the plunge! I hope all of you have a wonderful Memorial Day. thefleets@tds.net


Pat A's May 24 reply to Joshua's May 22, 2001 - Hi Joshua, I tried the web site for hyperbaric oxygen therapy but couldn't get it. Could you please explain it a little if you can? It sounds like something I want to hear more about. Is it the same as being on a condenser or what? Thanks! karuk46@yahoo.com


Sharron W, May 24, 2001 - Hi, Please let me know if CHF is covered under the American Disability Act. Two and one half years ago I had CHF and pulmonary edemna and almost didn't pull through at the emergency room. For 2 1/2 years I have had a stool to sit on at work. Two days ago they came and removed my stool at work. My legs already swell badly when I sit down but are even worse since I work an 8-hour shift. My inside right ankle was already swelling and my legs were like rubber when I was allowed to sit down but now it is much worse. Plus, I feel so tired and jittery at times but sitting down would help. I am also diabetic. Please someone let me know what they think of all this. I was also told to sit and elevate my legs for the leg swelling. Please give me some advice. Thank you, Sharron W. sharwade@webtv.net


Jon, May 25, 2001 - Hi everyone, I am still waiting for my FTP server to come back up. Arrggghhhh! Jon.


Maxine S, May 25, 2001 - Hi, I still have not seen anyone post anything about Guidant's Contak CD pacemaker/ICD. So far I seem to qualify for this. I will find out more next Wednesday when I meet with the doctor in Milwaukee who has been implanting this new device. From what I read, the results can be terrific. I had an echo on Wednesday. My EF went from 16% in December to 23% last week but I have some severe blockage. I just hope I can be able to have this. I cannot walk outdoors unless it is really warm with no wind. I do fine indoors with moderate exercise. Does anyone know anybody who has had this device implanted? It is Medicare approved and may be FDA approved late this year. jusmax@milwpc.com


Phyllis A's May 26 reply to Lisa's May 21, 2001 - Hello Lisa, I don't get on much anymore. I have a lot of other disorders going on like fibromylagia, hypertrophic cardiomyopathy, asthma, and acid reflux. I had breast cancer and I took adriamycin and radiation, which I know caused my CHF. My docs are just now starting to agree that my treatment for cancer caused it. Please feel free to e-mail and I will try to answer any questions you have the best I can from my own experience. pa132@juno.com


Joshua, May 26, 2001 - Hi, I'd appreciate any feedback intellectually grounded on hyperbaric oxygen therapy (for CHF). The reason I need feedback is because of Jack D's response. I get in my portable chamber I purchased from the oxystore.com for an hour 4 times a week but now I'm fearful, despite the fact that I no longer have congestion in my bronchials, nor do I have anymore ankle edema, and my energy has about doubled. I must be dying! If oxygen is toxic, please give me more! jatilton@tilda.ws


Joe S' May 26 reply to Dee L's May 24, 2001 - Hi Jan and Dee, Yes, CHF can go away but you have to follow a strict diet and everything laid out at The Manual.
     Dee L., it has been my experience that if I eat "wrong" in almost any area I will start wheezing. Two and a half years ago my CHF was so bad, they said I would only live 3 months. One year ago they said it was gone. Of course, I now have diabetes but am keeping it under control with diet as well. I did take some strong measures like moving to a high dry climate, and walking 1 1/2 miles twice a day; Yes, sometimes it takes a long time with several stops to rest. I have given up almost all sodium, bleached white flour, colas and sugars but believe me, it was very well worth it.
     I have had a leaky mitral valve for 57 years now and I still believe I am healthier then a lot of people, primarily because of this board and following most of my doctors' instructions. One more point, my cholesterol is 125 and my arteries are 75% clear and I'm pushing 63 awfully hard. Hey, people listen to what Jon has written. Joe S. jes@pronet.net


Dorothy's May 26 reply to Christy's May 23, 2001 - Dear Christy, You truly have my sympathy. I had a stroke in 1995 and have been dealing with UNUM since. I really thought my memory would get better but it just didn't. I had been working at a job I truly loved since January of 1972. In 1999 I finally decided I was being unfair to myself, my coworkers and my employee. UNUM could not seem to understand why I could work until October of 1995. My medical doctor wrote letters and submitted evidence that I was not likely to improve. UNUM required that I see a specialist who determined my IQ. Once he had completed the testing, he set my IQ at about 89. Only then did UNUM finally approve my disability coverage. Good luck! DPowell806@aol.com
 
Jon's note: I have no idea what UNUM might be.


Pat F's May 26 reply to Sharon P's May 23, 2001 - Hi, Thanks for the wonderful chuckle! It brought to mind some of my own "frustrations" in the kitchen. Now I put everything out on the counter to make sure I'm not missing anything, allow plenty of time to complete the task, and concentrate on one step at a time - a far cry from the old days but whatever works! Keep smiling. thefleets@tds.net


Jon, May 26, 2001 - Hi everyone, The following pages on my site have been added or updated:

  1. FAQ page about Edema
  2. Routine CHF Tests
  3. The Manual
  4. Recipe - Cucumber Dressing
  5. Recipe - Fruit Parfait
  6. Jill D's bio
  7. Sodium Listings
  8. Disability links
  9. Desktop Wallpapers

Jon.


William B, May 26, 2001 - Hi, Somewhere I read about a drug that you take about 30 minutes before you take furosemide and it is supposed to jump start the result into a flood. It seems my fluids are backing up a bit. I must be getting a little resistance to furosemide. I thought I would ask my doctor about it next week if I can find the name again. Thanks, William B. willdet@juno.com
 
Jon's note: zaroxolyn


Jack D's May 26 reply to Joshua's May 26, 2001 - Hello Joshua, I'm afraid you will never find any intellecually grounded feedback on hyperbaric oxygen therapy because it isn't an intellectual topic, it is a scientific topic. I got my information from the hyperbaric medical association web site.
     The post that claims the AHA issued a press release endorsing HBOT as a treatment for heart attack is not substantiated by the AHA. The forum you are getting your information from belongs to Todd Janca of Hyperbaric Technologies in Olney, Texas. They are are in the business of hyperbaric chambers and the web site promotes their business. The true college of hyperbaric medicine can be found here along with the specific list of approved treatments: www.hyperbaricmedicine.org/. Yes, oxygen under pressure is a poison. Any diver can tell you that. The deeper you are planning to go, the less oxygen is in the air mixture. That is because when you are deeper, the pressure is greater. Yes, you can buy chambers and dose yourself with oxygen but you are doing so at the risk of maybe not walking out of the chamber. Be as sarcastic as you please but laughing off the dangers of oxygen under pressure is very deceptive. maddjak@hotmail.com


Amelia, May 26, 2001 - Hi, I have been reading your posts and have gotten so much help. I have IDCM, LBBB, CHF, and a-fib. I have been in the hospital for 3 weeks off and on due to a TIA, with unstable blood pressure and heart rhythm.
     I had been on meds for heart failure 2 years ago, then changed doctors and because my echo numbers went up from 25 to 60, he said I didn't need meds and that my heart was fine and it was probably my lungs. I have now declined but now have a great team of specialists. My first try for a TEE had to be aborted during sedation because I went into a-fib and my heart rate was 155. After stablizing me for one day, a TEE was done and found that my heart was the culprit, throwing clots. The center wall of my heart is stretched with a hole in it. Actually, the doctor was glad to see on echo what happened. Now he knows what is going on.
     They were trying to stablize my heart and at the same time had to get my blood thin to prevent a stroke. I was on heparin, Coumadin, aspirin, Vasotec and amiodarone (Cordarone). Aspirin and heparin were discontinued on discharge. My EF was 38% when I was admitted but the doctor told me he doesn't pay too much attention to that because it goes up and down. I can still feel bad and be in heart failure even though my EF has gone up. I was thinking it was all in my head but thanks to all of you, I have been educated. I go back Tuesday and have lots of questions that I still need answered. I am not supposed to drive yet and the only reason I can think of for that is the TIA. My doctor who did a cath and my CHF doctor want me to have an EPS.
     I have read The Manual and the docs have told me a lot but still seems more like diagnostic and they may or may not be able to stablize the arrhythmia and I would still be on drugs. He said the risk of an EP Study was less then being on amiodarone. I wish you all the best and that each day you will get better. amelias@erols.com


Bob N's May 28 reply to Lisa's May 21, 2001 - Hello Lisa, I have DCM and CHF caused by adriamycin that I took for Hodgkin's Disease back in 1994 . I am doing better now than I have in many years. If you have any questions e-mail me. I am only on the computer once a week so if I don't get back to you right away I eventually will. Good luck. bignick42@aol.com


John Len's May 28 reply to Sharron W's May 24, 2001 - Hi, Try www.romingerlegal.com/expert/fields/accessibility.html, and also search on a search engine like www.google.com for "Americans With Disabilities Act" or something similar. a_lenny6@hotmail.com


Susan D, May 28, 2001 - Hi, I was diagnosed with sleep apnea 5/26/01. When I called the doctor's office about the results of the test, they told me that frankly they were suprised that I even woke up in the morning since my saturated oxygen level was as low as 73%. I now look at each day in a new light. I will thank the Lord for the gift of another day to have with my family and to share Him with my friends. sdavenpo@websprocket.net


Dee L's May 28 reply to Jon's May 24, 2001 - Hi Jon, Thanks for your reply. My CHf specialist told me I experienced atrial flutter Monday night. They have reduced my Coreg from 25mg to 12.5mg and started me on 200mg of amiodarone (Cordarone) daily. I am on the waiting list for a transplant as a Status II. Recently, I thought I was doing so much better. I did have some soup for lunch that day at a restaurant but other than that I have been pretty good about my diet and always take my medications as prescribed. My office building has been under construction and I have been trying get my office ready for a move. Maybe I just pushed the envelope? deedurham@webtv.net


Jon's May 28 reply to Dee L's May 28, 2001 - Hi Dee, Okay here I step out on a limb and start sawing it off behind me. <g> Assuming that you don't have some serious symptoms unmentioned here, why in the world would your doctor place you on the heart transplant list? Why would you accept a place on that list? I know nothing of your personal life so this is a shot in the dark but you are apparently well enough to keep working for now, well enough to enjoy yourself, including eating out with friends and so on. A heart transplant is rightly considered a last resort. I am left wondering.
     I also wonder what started your episode on Sunday - whether it was atrial flutter then or another problem such as mentioned in my last post to you. It pays to dig into such things, in my view, to prevent recurrence. Jon.


Mike W's May 28 reply to Wendy B's May 23, 2001 - Hi Wendy, What you describe as a family issue is actually a marital issue as far as I can tell. I suspect any kids are youngish. If your husband works sporadically and is asleep when you're off to your full-time job why in heaven's name is he not doing a good part, if not the majority of, housework?! This is not 1958! To be blunt, it may be time for you to stop being such a willing slave and perhaps stage a little job action. Your subsequent sarcastic posting is probably better directed at your dear hubby than at this message board, in my opinion. Mike W, a sometimes very lazy husband. mikeyw@sohogurus.net


Tonya Dean, May 29, 2001 - Hello to all, It has been about 6 months since I have posted. My husband and I just bought our first home and it took awhile to set up the computer again. I am going to my cardiologist this June for an echocardiogram. Are there any specific questions I should ask him? I feel fine most days; I would say about 29 out of 30 days of the month, with no edema or SOB at all. I take Coreg, Captopril, Lasix, and digoxin, and tolerate all very well. I just want to go in asking the right thing. Thanks! rntdean@jcn.net


Amelia, May 29, 2001 - Hi everyone, I sure hope all had a restful and a good weekend. Has anyone had any problems with amiodarone (Cordarone)? I was put on 1200mg for 4 days then 400mg a day. I have read that amiodarone can cause lung problems and one should be checked often, sinec it can be fatal. I was told amiodarone is the strongest and top of the line for a-fib and other arrhythmias. I have been on just about all of them; the last one was Norpace and I was taken off it because the doctor said it was aggravating my heart failure. I was given an extensive lung function test for a base reference. Any information on this med would be appreciated. Thanks for any information you may have, Amelia. amelias@erols.com
 
Jon's note: Click the link I put in your post for a start. ;-)


Jim, May 29, 2001 - Hi, I would like to know from anyone about their CHF results from adding spironolactone (Aldactone) to a drug protocol of digoxin (Lanoxin), Coreg, Zestril and isosorbide dinitrate.
     Also, I would like to hear from any CHFers who have undergone back surgery after developing CHF with an ejection fraction of 25 to 30% for a ruptured disc at the L-4/L-5 level and narrowing of the spinal canal (spinal stenosis in regard to the risk of the operation and how they did). Thanks, Jim. amity2@webtv.net


Tonya Dean, May 29, 2001 - Hello again, Do any of you know of any support or discussion groups in the St. Louis, Missouri area for congestive heart failure or for peripartum cardiomyopathy? I am really interested in joining one. Thanks, Tonya. rntdean@jcn.net


John Len's May 29 reply to Susan D's May 28, 2001 - Hi Susan, Come on over and join the sleep apnea group too. Like Jon's site, there is a whole barrel of information and an occasional chuckle or two. You won't regret it. It is located at www.sleepnet.com/apnea/apneainf.html. a_lenny6@hotmail.com


Sarah F, May 29, 2001 - Hello to all my friends at Jon's Place, Thanks so much for your prayers. I certainly needed them. I was released from Cleveland Clinic on the 24th of May. It was a long 2 weeks in the hospital. I am in the midst of an evaluation for a transplant right now. My doc is hoping that it can be put off by "fine-tuning" my medicines. Some of the doses have been changed and hopefully my low BP will come up a bit, which the doc thinks will reduce the angina pain I get so frequently.
     I felt very encouraged by the staff on the heart failure and transplant team. It is still scary to be home and on my own again. This last heart attack and CHF episode really frightened me. Over time I am sure that will decrease and I will eventually get my old self confidence back. Again, thanks for all of your support, Sarah. sfuhrmeyer@neo.rr.com


Sharon P's May 29 reply to Amelia's May 29, 2001 - Hi Amelia, I am taking amiodarone too because all the other drugs failed to do the trick and my defibrillator gave me the jolt of my life, in church no less. About 3 months after I began taking it, the nausea and headaches became so severe I went to an ER on a Sunday night.
     As it turned out, amiodarone interacts with Lanoxin and raised my digoxin levels to toxic. Unfortunately it took another 3 weeks to figure this out and it was my internist, not my two cardiologists, who figured it out. Once I went off Lanoxin, I was fine within a matter of days. The other problem it caused for me is an underactive thyroid, which evidently is common. I have had two pulmonary tests, which were both perfect. The only other bothersome side effect is that after about 15 minutes in the sun, my skin is burned. At my request, my dose was reduced to 100mg per day. Blessings, Sharon P. sparker103@home.com


Linda McAuliffe, May 31, 2001 - Hi, It's been awhile since I've posted. I'm looking for more up to date studies on stopping Coreg. I've been very lucky since my diagnosis for DCM three years ago and last June had a EF of 60. At that time my cardiologist and I discussed Coreg, and decreasing my dose from 12.5mg to 6.25mg twice daily. I've done fine and am due another echo in June. I'm pretty sure it will confirm what I feel, that I've remained stable. I want to know the pros and cons of stopping Coreg or reducing to 3.125mgs. I have low blood pressure and weigh in at less than 130. When first diagnosed at 19% E,F I was put on 3.125mg for a month before increasing the dose. On this regimen my EF increased so I know this low of dose does work for me.
     On another note, Coreg is supposed to reduce PVCs but in my case they more then doubled with each doubling of my dose to a rate of 4500 a day at 12.5mg. Since cutting the dose in half last year these have reduced in number. I wonder if they will reduce even more at a lesser dosage. Sorry for rambling but I guess my real question is, will I benefit more by halving the dosage to 3.125mg for another year or quitting altogether. Thanks, Linda. LMcAuliffe@aol.com


Jon's May 31 reply to Linda McAuliffe's May 31, 2001 - Hi Linda, I don't know. If your PVCs went up because of the Coreg (I'm no longer quick to accept cause and effect of such things without some really strict testing for true cause), then you do not exhibit a usual physiological response to the drug. That means all bets are off. You and your doctor will have to work this one out. For people with heart failure who do exhibit a usual response to the drug, dropping below 6.25mg twice a day is usually a really bad idea. For people with coronary artery disease, stopping Coreg is a really bad idea. Jon.


Claire, May 31, 2001 - Hi, This is my first time on your site and I would like to know if you know anything about viral cardiomyopathy and peripartum cardiomyopathy. Are they hereditary? virginclairey@hotmail.com


Ophelia, May 31, 2001 - Hi All, I'm doing okay other than a TIA two weeks ago. I'm still on Coreg and Zestril, and am trying to take care of myself. I'm posting because I was reading Forbes last night and came across Natrecor - the drug which is a nice competitor over Nitro and Lasix. The article says that it is up for FDA approval in July and it looks like it will be approved, finally. Isn't that something? I did look it up on Jon's Place and found out a little more about it because I never heard of it before reading last night. Take care all. omclain@hotmail.com
 
Jon's note: Natrecor won't currently sub for Lasix as we use Lasix. Natrecor is currently not meant to be taken long-term and is currently IV only, for acute episodes of decompensated CHF


Michael, May 31, 2001 - Hi, I am currently taking Coumadin, furosemide, digoxin, spironolactone, captopril, Coreg, and a magnesium supplement. Does anyone out there experience skin problems from taking any one, or a combination of, these drugs? If so, do you know of any good remedies? Normal skin lotions don't seem to help the terribly dryness and flakiness I am having. anthrophobe@ua.net


Bruce, May 31, 2001 - Hi, I am age 67 and a veteran. I was diagnosed with cardiomegaly (an enlarged heart) in 1994. To date I have had stents placed and thallium tests done but no other surgeries. My doctor from the VA says that is all they can do. Surely that can't be right, do you think? I really want to get into some clinical trials or research or at least find out what my choices are and I have no idea where to start. Any help from any source would be greatly appreciated. HTCSVDUKE@aol.com


Cristina L's May 31 reply to Amelia's May 29, 2001 - Hi, I'm also on Cordarone. I get a lot of extra beats but not VTs. It was almost a-fib and that's the reason they started me on this medicine. Although I feel great while taking it, I'm worried about the long-term effects. I've been on it for 3 months, since open-heart surgery for mitral valve repair. Does anyone know the long-term effects? I heard it can affect your thyroid. I currently take 200mg a day. My only concern with an ICD is that although it may save my life at some point, I'm wondering if it will get rid of my daily extra beats. My doctor believes the extra beats are from inflammation from my surgery. Does anyone have similar problems? Cristina. clisa@ridgewoodcapital.com


Amelia's May 31 reply to Sharon P's May 29, 2001 - Hi, Thanks Sharon for sharing your experience with amiodarone. I did talk to my doc about this yesterday and he said my liver and thyroid would be checked every month for awhile, then every 3 months, and a lung function test about every year. Now I am having problems with Coumadin adjustments. Last week my blood was too "thin" and this week it is too "thick." I had my ACE inhibitor increased to 5mg daily and an increase in Coumadin as well. I am still not supposed to drive until the amiodarone settles my arrhythmia and my blood gets thin, so I won't throw any more clots.
     Here's wishing you all the best for better days, and thanks Jon for a wonderful site. amelias@erols.com


Ruthie A's May 31 reply to Jim's May 29, 2001 - Hello to all, I hope your holiday went well. Those of us in Indianapolis survived as well as could be expected with a half million extra people in the city for the race.
     Jim, I had an L4/L5 disk repair and cleaning out of stenosis a year and a half ago. The docs planned on sending me to ICU after surgery, and the anesthesia doc took extra precautions to watch my heart during surgery and recovery. They all said my heart did the best of any part of my body, and the ICU bed was cancelled. I was walking the day after surgery and went home the day after that. With care by your doctors before, during, and after surgery, you should be just fine. If you have any specific questions, feel free to e-mail me. I am mentally preparing for another surgery for my L5/S1 repair, but it won't happen until I get insurance so it will be a while yet, Ruthie A. rlaba51@yahoo.com


Chirsty, May 31, 2001 - Hi, My name is Chirsty. I have CHF due to my pregnancy. I have had CHF and arrhythmia for a little over 2 years. I also have an ICD. It has shocked me 20 times but has not shocked me for a year now. I thank God for each and every day I have. I have 2 great kids: Katie is age 4 and Josh is age 2. Does anyone have a problem with weight gain since getting CHF? I have gain 90 pounds. I have been tryng to lose the weight. I have a problem with eating too much ice. Can anyone help? Christy. Bshirley@blomand.net


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

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