Joe S 12-16 have been down for awhile
Stephanie 12-16 EF and device questions
Jon's 12-16 reply to Stephanie's 12-16 EF and devices
Sandy's 12-16 reply to Sherri's 12-15 ACE inhibitor cough experience
Cheryl 12-16 what can I expect at stress test/doc visit?
Ron Magliacane12-16 seek doc info around Charleston, South Carolina, USA
Jon 12-17 exercise pages are online
Patty 12-17 seek ideas on low hematocrit
Tunny 12-17 being resuscitated caused burns - anyone else?
Sarah 12-17 seek suggestions for my dad
Loretta D 12-17 seek suggestions for surgery stay
Jon's 12-17 reply to Loretta D's 12-17 I hope others also reply
Tonya Hindman 12-17 intro, my story
Clara D's 12-17 reply to Jon's 12-16 echoes, update on my husband
Valerie R 12-17 cataract surgery & ICD - anyone else?
Joy Kachel's 12-17 reply to Giorg's 12-16 PVCs experience
Elizabeth K's 12-17 reply to Peter's 12-7 ICD research
Roger H's 12-18 reply to Sharon's 12-15 folic acid experience
Patricia's 12-18 reply to Cheryl's 12-16 many treatments are available
Catherine 12-18 I am still doing great!
Sarah's 12-18 reply to Jon's 12-17 will keep you posted
Giorg's 12-18 reply to Joy Kachel's 12-17 arrhythmias and cardiomyopathy
Norma's 12-18 reply to Sarah's 12-17 be sure he is treated aggressively
Giorg 12-18 genetic cardiomyopathy & question
Sarah's 12-18 reply to Jon's 12-17 his liver is inflamed
Cathy's 12-18 reply to Tunny's 12-17 this is not uncommon
Valerie R 12-18 cataract surgery and ICD
Lane's 12-18 reply to Giorg's 12-11 amiodarone experience
John Len's 12-20 reply to Loretta D's 12-17 gastric bypass experience
Sandra S 12-20 disability is stopping - what to do?
Joy's 12-20 reply to Tunny's 12-17 defib burns
Joy's 12-20 reply to Giorg's 12-18 PVCs experience
Brin 12-20 seek CHF doc near Middletown, Ohio
Donna H 12-20 update & more
Shane R 12-20 seek immune modulation info
Jon's 12-20 reply to Shane R's 12-20 immune modulation info
Ken W's 12-20 reply to Valerie R's 12-17 ICD, pacer, and surgery experience
Carla 12-20 good news update
Cheryl 12-21 should I get a second opinion?
Jon's 12-21 reply to Cheryl's 12-21 I would get a second opinion
Peter S' 12-21 reply to Elizabeth K's 12-17 thanks for ICD info
Art McKellar's 12-21 reply to Shane R's 12-20 Celacade trial experience to date
Jon's 12-21 reply to Art McKellar's 12-21 Celacade trials
Jeff Anderson 12-21 high thyroid level questions
Norma 12-21 seek experiences with boils
Amy's 12-21 reply to Loretta D's 12-17 weight loss surgery experience
Sherri's 12-23 reply to Jon's 12-21 seek ICD info
Jon's 12-23 reply to Sherri's 12-23 SCD benefit versus pump failure
Kristen 12-23 what will happen to my father?
Amy's 12-23 reply to Norma's 12-21 experience with boils
Peter S' 12-24 reply to Sherri's 12-23 ICDs, sudden death, pump failure issues
Peter 12-24 seek ICD-Medicare experiences
Sandy 12-24 update on device implant
Pat Y 12-24 10 years with CHF & still kicking
Lowell P 12-26 concerned about BNP level
Lowell P 12-26 BNP level and ACE inhibitor
Jon's 12-26 reply to Lowell P's 12-26 numbers, meds & more
Sandy's 12-26 reply to Pat Y's 12-24 congratulations
Kurt 12-26 seek ICD experiences
Norma's 12-26 reply to Amy's 12-23 thanks
Tony Myrick 12-27 seek hiccup experiences
Keith Lundy 12-27 pacemaker implant experience
Bernard's 12-27 reply to Pat Y's 12-24 surviving heart failure & cancer
Ann L's 12-28 reply to Bernard's 12-27 how did your heart hold up?
Mary Anne 12-28 seek info on stopping amiodarone
James 12-28 much better after pacemaker
Joe's 12-29 reply to James' 12-28 shoveling snow can be risky
Margaret D's 12-29 reply to James' 12-28 shoveling snow
Norma's 12-29 reply to James' 12-28 shoveling snow
Tunny's 12-29 reply to James' 12-28 that's great!
Sandy 12-29 seek site about hepatitis C
Sandy's 12-29 reply to James' 12-28 shoveling snow
Nancy S' 12-29 reply to James' 12-28 I also improved with CRT pacemaker
Arthur N's 12-29 reply to Keith Lundy's 12-27 CRT pacer experience
Jack D's 12-30 reply to Sandy's 12-29 hepatitis C experience
Norma 12-30 any ideas on this recurring fever?
Peter's 12-30 reply to James' 12-28 shoveling snow
Sandy's 12-30 reply to Jack D's 12-30 hope for her hepatitis C
Brenda 12-30 any ideas?
Vicki James' 12-30 reply to Giorg's 12-18 seek gene information
Vicki James' 12-30 reply to Sandra S' 12-20 disability worries
Robert 12-31 can a CHFer have lung cancer surgery?
Andy 12-31 ICD and surgery experience
Joe S, December 16, 2004 - Hey Jon, I'm back after months of absence. I lost my web site and health for awhile. I had to move to Carson City, Nevada to get into a good cardiac rehab place and have been doing great. I see you're still doing great work. Your old friend Joe. firstname.lastname@example.org
Stephanie, December 16, 2004 - Hi all, I was sent to an arrhythmia specialist by my heart doc because of some V-tach runs on a 24 hour Holter monitor recording. The specialist (who is a long-haired hippy dude!) says I need an ICD. He also asked me to participate in a study of the Optimizer II. I have not fully decided if I will participate but went ahead with the pre-screening tests to see if I even qualify. When the echo was done, it was determined that my EF was 49%. My EF at diagnosis in August of this year was 20%. While delighted that the meds are working and that my EF is up, does this seem like a drastic jump to anyone? Can the echo be wrong or can it be interpreted wrong? The study nurse seemed a little skeptical at the huge jump so I thought I would try to get some one else's input. Thanks, Stephanie. email@example.com
Jon's December 16 reply to Stephanie's December 16, 2004 - Hi Stephanie, The heart is a more dynamic organ than people like to think. It can change very quickly in many respects. Yours is a drastic jump, but that doesn't make it an inaccurate reading. If concerned at the test result accuracy, why not get an immediate second opinion? That's a good idea whenever your care is in question in any way.
Echoes can be poorly executed by a tech, and there is a lot of difference in interpretation by doctors. See the article at the bottom of the echo page (Reading Echo Results). Don't forget that echo for measuring EF has a wide margin of error from the word go, by as much as +/- 8%.
Yesterday we got a second opinion about my wife's heart. The second opinion came from my own heart doc. The difference in results was the difference between possible heart surgery and no need for any treatment at all, with solid numbers to back it up. My doc would not give us an opinion until another cardiologist in the office also checked the echo. She doesn't even have heart disease of any kind! Her heart may really have improved that much or maybe the first doc misinterpreted a test or had a poorly done echo to read - who knows? The point is, get a second opinion whenever in doubt!
These are some of the reasons why I don't consider EF nearly as important as most cardiologists still do. Their view will change (and is slowly changing even now) as they learn more about heart failure patients in real life. My own heart doc happens to agree with me. How you feel and how well you can be physically active (measures like Vo2max) are far more revealing.
Anytime you are considered for a heart device, you must be certain you fit the established patient selection criteria! This will largely determine if an invasive, permanent device implant will actually help you or not. If you fit the selection standards well, you have a good shot at real improvement. If you don't fit them, why get the device? So read up, and ask a thousand questions a thousand times until you are satisfied with the answers. Then go with your decision wholeheartedly! <g> Jon.
Sandy's December 16 reply to Sherri's December 15, 2004 - Hi Sherri, My doctor took me off Ace inhibitors after I coughed for months, day and night! I'm taking Micardis now (an ARB with diuretic) and no more cough! firstname.lastname@example.org
Cheryl, December 16, 2004 - Hello all, I just found this site and just would like some input. I have an appointment on 12/16 for a echo stress test. I went to my family physician Monday with a really heavy feeling in my chest. I have had a cough and was treated on and off for bronchitis for almost 2 years. He did a chest x-ray and found I had an enlarged heart. Hence, the stress test.
I am 47 years old, overweight being my only vice. I have always had low blood pressure and am not diabetic. I have however in the past few months noticed a lot of sweating, trouble sleeping, and being tired. I also had the feeling of my heart popping out when I mowed the lawn. Needless to say, I am really scared and just kind of want to know what to expect.
I love this web site and send Jon a thank you. If anyone can offer up advice, I would appreciate it. Happy holidays to all, Cheryl. email@example.com
Ron Magliacane, December 16, 2004 - Hi everyone, I was hospitalized with my first CHF "event" just about a month ago. I'm looking for anyone with experience with cardiologists in the Charleston, South Carolina area. My doc is an interventional cardiologist, but he isn't very people minded. I'm looking forward to someone to share info with. firstname.lastname@example.org
Jon, December 17, 2004 - Hi everybody, The initial CHFpatients.com exercise section is pretty much done. I still have some proofreading to do and some more photos to take and add. If you spot any mistakes, typos, broken links or whatever, please let me know. This is the largest set of pages I have ever written at once so I am sure there are some boo-boos. If it looks funny in your browser, I'd really like to know that too, since I went nuts using style sheets.
Start at www.chfpatients.com/faq/exercises/exercises.htm. I hope it helps. All suggestions welcome - I may not use them but I will certainly consider them one and all. Jon.
Patty, December 17, 2004 - Hello, My father, age 82, is in the hospital receiving blood. He has a hematocrit of 27. He has CHF as a result of heart disease (two past bypass operations). Last May, he had the same hematocrit (27) and received blood transfusions. The doctor thought it was the result of blood thinners. He has been off any blood thinner since May. Any ideas would be appreciated. Thanks. email@example.com
Tunny, December 17, 2004 - Hi all, Just a note: I had an electrophysiology test for testing the lower part of my heart. In the process of the test it caused the upper part of my heart to react. They had to use the paddles twice on my chest and once on my back. This was like putting a hot iron on me and I was burnt on my chest and back. I had several days of healing which were miserable days. I am wondering if this is usual or not. Has anyone had this problem? If so, I would like to hear input. Thanks Jon, for this wonderful site. firstname.lastname@example.org
Sarah, December 17, 2004 - Hi, My dad is 86 and started coughing last August and was prescribed antibiotics for months. He ended up in the hospital at the beginning of October and was found to have left-sided heart failure. The cardiologist said heart function was reduced by 35%. The cough supposedly was from fluid in his lungs. He was put on 0.2mg nitroglycerin, 20mg Lasix, 25mg Aldactone, 2.5mg Accupril, and 2mg Coumadin. He never took meds before.
The cough stopped overnight but he has gone steadily downhill ever since. His biggest complaints are insomnia, heartburn, lack of appetite, confusion, weakness, and unsteadiness. He had leg cramps but we adjusted when he took Lasix and resolved that. His skin is yellow. His blood pressure is good and weight is stable. He was extremely active and sharp mentally last August. I'm wondering if he's overmedicated. We have a doctor's appointment tomorrow so please tell me if you have any questions you may advise me to ask.
I have not found a heart failure specialist here in Pittsburgh. We do have an internist and a cardiologist however. I would be very grateful for any help. Sarah. email@example.com
Jon's note: Has his liver and kidney function been checked? His electrolytes?
Loretta D, December 17, 2004 - Hello, How do you deal with heart failure during major surgery? I am going to have gastric bypass surgery in January. My major concern is retention of fluids during those three or four days that I will be in the hospital. My current Lasix 40mg twice a day does not seem to keep me from retaining fluids now. firstname.lastname@example.org
Jon's December 17 reply to Loretta D's December 17, 2004 - Hi Loretta, If it were me, I would want several things done. First, I would make absolutely certain my heart failure specialist actually talked to the surgeon about my needs. I would also arrange for an anesthesiologist to be present in my operating room the entire surgery, not a nurse anesthetist being checked by a rotating anesthesiologist. I would also get doctor's orders written to prevent me from receiving intravenous solutions containing a lot of sodium. I would have people I trusted (family, church family, etc) in my room around the clock to make sure these orders were followed and also to make sure all medical personnel washed their hands before approaching me. I hope others contribute ideas as well. Jon.
Tonya Hindaman, December 17, 2004 - Hello, I am 23 years old from Douglasville, Georgia. In May, I caught a really bad cold and and started coughing up blood so I went to the emergency room where they said I had a type of flu. My lungs had fluid in them and they gave me medication and sent me home. A few weeks later I got to feeling better but I was very weak and still coughing up blood. All of a sudden I started swelling really bad. It got so bad I could not walk. I sat on my couch for two weeks and hid it. I never said anything and didn't move. I had by then lost all muscle in my legs but I never had chest pain or anything, just maybe a little shortness of breath. I lived on my own with my boyfriend at the time and I never told anyone.
When my parents found out how bad it was they came up June 19th and carried me out of my house to the hospital. They admitted me because my kidneys were failing. The next day they discovered I had so many blood clots they did not know what to do with me. I also had cardiomyopathy. My heart was only 10% and I was put on oxygen to help me breathe. My family was told that I would only live for the next two or three days. I was so scared. They put me on medication. Two months, a lot of tests, and a lot of physical therapy later they let me go home. I still went to phyiscal therapy for awhile.
I still don't have all my strength in my legs back yet but I no longer have to use a walker or a wheelchair. I feel really good. I still have blood clots in my legs, my lung and my heart but I am better. They say the fluid buildup is gone and the swelling in my heart is gone. Slowly my heart has gotten a little bit stronger. They say because I am so young that I have a good chance and that makes me happy.
It is hard for me because my grandfather passed away in 2001 from cardiomyopathy. Just this Saturday, my other grandfather passed away from heart problems also. That makes it scary, you know? Now I take 15 pills a day, including Coumadin, Coreg, spironolactone, metformin, furosemide, Altace, and levothyroxine. I found out I have hypothyroidism and insulin problems but they said they can treat the insulin problems before I become diabetic. I have lost over 100 pounds since July. I exercise and eat low-sodium foods. I am trying to stay healthy but I'm scared. I have learned a lot.
I have a cousin that has had this same heart disease for 5 years also and he is doing very well and he helps me a lot. I do my research about my medications and I am always learning something new about DCM or CHF. I'm not as scared because I have learned through all of this. Since I quit smoking, lost weight, started exercising, and eating right, I learned I have will power. I have the will to live. I have strength and I am never going to lose my hope ever. I have a wonderful boyfriend who is very supportive and I have a lot of family and friends who are also there for me.
I'm happy. It took getting DCM and CHF to open my eyes to learn what life was really all about. It took a lot but now I am truly happy and proud of who I am! They said it is possible I may not have any permanent damage. Who knows? Xprincesswoo411x@wmconnect.com
Jon's note: Please take a look at the page linked to the word "metformin" in your post.
Clara D's December 17 reply to Jon's December 16, 2004 - Hi everyone, We recently had an experience which has made us skeptical of echos. For 12 years we were told that my husband had an abdominal aneurysm. Its growth was documented by yearly echos. This year it had reached a point where we were referred to a vascular surgeon who ordered a CT scan to see if my husband was a candidate for a stent, a recently available option which is much less invasive than traditional surgery. It turns out my husband has no aneurysm. He does have a curve in his aorta causing the measurement by echo to be taken on the diagonal instead of sraight across! Of course it is a great relief to learn this but we have had needless years of worry and expense.
Unfortunately, the CT scan gave us something new to worry about. Twelve years ago my husband had emergency surgery to correct a dissecting aneurysm on his ascending aorta. A graft was done and we thought all the dissected area had been repaired. This CT scan showed the dissection had continued across the thoracic arch and down the thoracic aorta to just above the kidneys and now measures 4.7 in diameter. Stents for the thoracic aorta are not available in the USA outside of trials and traditional surgery in that area carries a 25% risk of paralysis so for now we will just wait and watch and hope that it remains stable. Criteria for inclusion in the current trial at our hospital is aneurysm, not dissection, but our surgeon said that could change in coming months or years.
Wishing you all a joyful Christmas and a healthy new year. Clara D. email@example.com
Valerie R, December 17, 2004 - Merry Christmas! At the end of January, I am having cataract surgery. As soon as the surgery schedule girl found out I have an ICD (she did not bat an eye at my pacemaker), she moved my surgery to the Cardiac Wing and said I would have to contact the Medtronic rep to have my ICD turned off. Further, she said he would have to be present during the procedure. I have searched your site Jon and find no reference to turning the thing off. Has anyone had cataract experience with defib? firstname.lastname@example.org
Jon's note: Be sure to ask at an implanted device forum. There is one listed at our links page.
Joy Kachel's December 17 reply to Giorg's December 11, 2004 - Hi Giorg, I have extreme empathy for you in regard to the PVCs because I too have them. I have not experienced being in a bigeminy arrhythmia for 24 hours but on my last Holter monitor I was running 3,500 PVCs in a 23-hour period. I can understand your reluctance about restarting amiodarone (Cordarone). There are other anti-arrhythmics but many cannot be used for PVCs and others cannot be given to people who have heart failure. Your blood pressure is low so increasing your beta-blocker may not be an option. By increasing my beta-blocker (which I did with extreme small amounts) and then dropped back to my usual dose I was able to decrease the frequency of my PVCs.
Are you a candidate for a pacemaker? I see you have tried benzodiazepines with little success. Sometime they help me cope with the blasted things. Other times they do absolutely nothing. Have you tried receiving oxygen as a therapy to see if that makes any difference? Do any of your other medications seem to trigger them? Taking medications at different times might help. I am sure you stay away from caffeine.
I am assuming your docotor is going to try intravenous Cordarone in the hospital and then switch to pills if success is noted without side effects and with your blood pressure being on the low side. Sincerely, Joy K. email@example.com
Elizabeth's December 17 reply to Peter's December 7, 2004 - Hi Peter, I'm sorry to be slow with an answer - tis the season. I spent a good part of the summer studying SCD. I qualify for the ICD club but feel good and am active so visions of vibrating down a washboard road on my mountain bike and being zapped over a cliff were powerful motivators to do homework.
Jon, as always, has great info to get you started. The next best stop is ww.medscape.com. They have the raw stuff full of what Jon refers to as medspeak. You need to register but it is free. The study you want is MADIT II. The buzz words to start your search are MADIT II, SCD, ICD and sudden cardiac death. You might also want study Microvolt T-Wave ALternans by Cambridge Heart (www.cambridgeheart.com).
Basically, SCD is a cardiac electrical storm worsened by scar tissue that interferes with electrical signals. MADIT II says an EF of less than 30% and a past heart attack causing heart muscle scarring puts you at greater risk. Remember this is not absolute data about the mechanics of SCD, it is a statistical study designed to determine who might benefit most from a very expensive implant. Medicare promply added another criteria (QRS waves) to limit the number of ICDs they will pay for, a move that is hotly debated. More information is available at implantables.com (a message board for ICD patients, and also at manufacturers' sites like guidant.com and medtronic.com. In addition, there are several other studies before and after MADIT II, but MADIT II is the standard because it is a multi-facility study with several thousand patients.
Stock up on snacks - it's a big subject. Happy research, Elizabeth. WmOccam@aol.com
Jon's note: A quick note - the implications of MADIT II are hotly debated by more than Medicare. Many cardiologists believe researchers were not specific enough and went too far in their recommendations on who will really benefit from an ICD.
Roger H's December 18 reply to Sharon's December 15, 2004 - Hi Sharon, I've been on 5mg of folic acid for about a year now plus my cardiologist said I should also take N-acetyl-cysteine. I went from 14 down to the present 10. The folic acid is a prescription and my doctor said that way I know I'm getting the right amount that I'm supposed to get. firstname.lastname@example.org
Patricia's December 18 reply to Cheryl's December 16, 2004 - Hi Cheryl, I was diagnosed last February with similar symptoms. I also have always had low blood pressure, low cholesterol, no other known risk factors, etc,..., and was having symptoms for about 2 years before being properly diagnosed. I had never been sick before from anything other than a bad cold, so I know how scary this can be at first.
When finally diagnosed with idiopathic dilated cardiomyopathy, I was already a class 3 to borderline class 4, and even after months of proper medication I was not improving, so they were talking transplant. However, in November of this year they put a biventricular pacemaker/ICD in (not a big deal at all), and I'm now improving quickly! I don't know if this will be the proper treatment for you since everyone's problem seems to be a little different. Many people respond to oral medication alone.
I just want you to know that the treatment options for cardiomyopathy have greatly advanced in the last few years and many people respond to therapy quite well. The important thing is to make sure your are working with a specialist you feel comfortable with. Many of us are leading full lives and are able to manage this disease quite well. I'll keep you in my prayers, and please let us know how your tests go. email@example.com
Catherine, December 18, 2004 - Hi, I just want to tell everyone that I am still doing great since my cardiologist pronounced me cured last June following a 1-1/2 year struggle with viral cardiomyopathy. I successfully stopped my beta-blocker (Toprol-XL) and am full of energy. To those of you with this condition, don't lose faith that you can be cured! I am a living example. Miracles do occur! Happy, healthy holidays to all, Catherine. firstname.lastname@example.org
Sarah's December 18 reply to Jon's December 17, 2004 - Yes Jon, Dad had a full series of tests and all have come back normal for kidney, liver, pulmonary, etc. His electrolytes have been stable and normal for two months. By the way, he was admitted to the hospital today. We'll see what the docs come up with. Our theories are overmedication or another cardiac event since his last hospitalization. I will keep you posted. Thanks for the quick response and bless you for this board! Sarah. email@example.com
Giorg's December 18 reply to Joy Kachel's December 17, 2004 - Hi Joy, First of all thank you a lot for your answer. My beta-blocker (Coreg) is already at the target dose (50mg per day) and yes, usually my blood pressure is so low that increasing it does not seem an option. I will ask my cardiologist, though. I already have an ICD/pacemaker but I do not see how it could help with PVCs. It helps me with V-tach but as far as I know it cannot do anything against bigeminy. Do you know something more about it?
I avoid caffeine and as you say, benzodiazepines sometimes help, sometimes do not. Just yesterday I talked again to my cardiologist who kind of changed his mind and said that amiodarone is most probably not tolerated by me, so he wants to switch my beta-blocker from Coreg to sotalol. I am scared because I read that Coreg is the best drug in cardiomyopathy, while not much is known about sotalol. I got that Coreg is more effective to reduce dilation, sotatol to reduce arrhythmias (while controlling dilation). I really do not know what to do. As you will read in an other post I am writing, prognosis of my DCM is poor, so I do need the best therapy. Thank you. firstname.lastname@example.org
Norma's December 18 reply to Sarah's December 17, 2004 - Hi Sarah, I am 81 now. I was diagnosed in June of 2003 with heart failure. I have a wonderful young family doctor that I call my "slave driver" because he is so aggressive and meticulous but I still wonder if when we reach the eighties if they don't kind of write us off.
It sounds to me as if they are not doing some very important tests on your father to see the overall picture of his problem. I have improved dramatically over the past year and a half. I have lost at least 20 pounds, can now walk as much as 6 miles one day a week, and 3 to 4 miles the other days. I used to work out at the gym, but I took this summer off and just concentrated on walking. I am going back to the gym in January.
My doctor cut my Mavik back by half because my blood pressure was going too low and I was falling around! I also take Toprol-XL at 100mg, 40mg Lasix, a big prescription potassium pill, Creator at 10mg, CoQ10 at 30mg, a multi-vitamin, a Clarinex if I need it, and Protonix if I need it. So I know we older people can be helped and can live an active, enjoyable life! My family doctor works closely with a cardiologist. Still, I would like to be in contact with a heart failure specialist because I want to be all that I can be in these golden years!
I have a strong faith in my God, always giving Him the glory for His living in and through me! Thanks Jon, for this very helpful web site. God bless you and yours. email@example.com
Giorg, December 18, 2004 - Hi guys, Over these days I am writing in this great forum about my PVCs but I want to share with you all something new I discovered about myself. The origin of my cardiomyopathy is genetic and I already knew it because I am the fifth person diagnosed whith that in my family. The news is that genetic researchers just found the defect in my DNA that predisposed me to dilated cardiomyopathy: It is in the Laminine A/C gene. Unfortunately, that defect is related to a dilated cardiomyopathy with conduction defects (and as you know I have PVCs, bigeminy and V-tach but also luckily an ICD), mild dilation, but with a very poor prognosis.
Compared to other DCM, this one seems very difficult to stop. I could see that with my mother and my uncle who got heart transplant 4 years after diagnosis and with a cousin of mine who is on the transplant waiting list right now. No need to say that the same defect was found in the DNA of all the DCM patients of my family. I was diagnosed 3 years ago but I am not listed because my EF is still 30% and I am class 2 (trying to go back to class one) but I am kind of scared.
I am surfing the Internet to search alternative therapies and everything that can help me to live longer with my heart. I read that in Germany it is quite common to give an immunoadsorption therapy to DCM patients besides standard therapy, assuming that there is a phase in the disease that is autoimmune. Has anyone tried this? It seems promising. I read papers released in the last months that show good results even if in very little trials. Thank you. firstname.lastname@example.org
Sarah's December 18 reply to Jon's December 17, 2004 - Hi Jon, The tests came back for Dad's liver this morning. It is slightly inflamed (index 300?). He will have a scan tomorrow. Interesting that you should ask. Sarah. email@example.com
Jon's note: Unfortunately, I don't know of any liver test that would come back at 300 anything without being very serious.
Cathy's December 18 reply to Tunny's December 17, 2004 - Wow! It sounds like you were rescusitated. If so, the burns you experienced are an unfortunate and not uncommon side effect of being blasted with electricity. Of course, the benefit is, you get to live. firstname.lastname@example.org
Valerie R, December 18, 2004 - Hi everyone, My cardiologist told me that it is not unusual to turn your ICD off and have a device manufacturer's representative there during the cataract procedure. There is some concern the machinery will affect it, evidently. I also found out why I have had to wait so long to get this cataract procedure done. It's because it is elective surgery and insuranace will not pay unless it's bad enough. email@example.com
Lane's December 18 reply to Giorg's December 11, 2004 - Hello, I can empathize with you, Giorg. I stayed in bigeminy most of the time and went into arrhythmia. The second trip to the emergency room I didn't come out of flutter, had irregularly irregular arrhythmis and flutter, and I can tell you that isn't any fun. They couldn't get me into normal (sinus) rhythm and the next day had to use cardioversion to bring me back into sinus. That's where they shock you with the paddles, like you see on television but you're under a general anesthesia.
Anyway, they put me on amiodarone but it didn't really improve my PVCs or bigeminy. After a second trip and stay in Club Med, I saw an electrophysiologist. He told me to avoid amiodarone, as it hadn't been studied for efficacy and to only take Cordarone or Pacerone. I immediately saw a difference in my PVCs and bigeminy. Now, seven months later, they're pretty much gone. I can't tell you how much better I feel without them.
Well, my cost with insurance for Cordarone was 152 dollars US for 30 days but I could get Pacerone at the generic price at Sam's Club. No membership is required there if you just need medicine. Check around, even if you do have insurance. You might find a drastic difference. Contact me by e-mail if you have more questions. I'm happy to help anytime. firstname.lastname@example.org
Jon's note: According to my information, Pacerone is Cordarone is amiodarone. Cordarone is a brand name and the others are generic names.
John Len's December 20 reply to Loretta D's December 17, 2004 - Hi, My daughter had gastric bypass surgery a year ago. Now her company insurance plan and others she has checked with will not cover any aspect of medical conditions having to due with the gastric bypass surgery even though they initially paid for the surgery. email@example.com
Sandra S, December 20, 2004 - Help! I received a letter today that said my SSD will stop in February. I have been under a review process but I never thought they would deny me. I know I can appeal but how long could all this take? The strange thing is that my EF has dropped. I suffer from severe depression and don't think I can work. I am scared to death I am going to lose my disability payments. I don't know what I will do if this happens. Can anyone help me with this or tell me someone I can talk to. My heart doctor thinks I can work but can they not consider my depression as factor? Any help or advice? I would love to have some. firstname.lastname@example.org
Joy's December 20 reply to Tunny's December 17, 2004 - Hello, In regard to receiving cardioversion whether it is synchronized or defibrillation with a standard conventional defibrillator, there should be no burns to any part of the body. Gel pads are placed on specific locations on the chest or can be placed on the back. The paddles are then placed over these pads. If a burn is sustained, the person delivering the shock via the paddles either missed the pads or failed to use them or the pads were outdated ones. Having worked in an ICU unit and also in an ER and performing both synchronized cardioversion and defibrillation, I never witnessed one patient with burns on their body.
Prior to the use of gel pads, a gel was used to smear over the paddles and then burns were more likely to occur because insufficient gel was used or was forgotten. Even with a patient "going down" right in front of you or even in ambulance on route to hospital, gel pads were always available. I would certainly question the reason for the burns on my body. Gel pads are the cheapest part of the equipment except for the electrodes attached to the EKG leads. I hope by now your burns are healed. Joy. email@example.com
Joy's December 20 reply to Giorg's December 18, 2004 - Hi Giorg, Good luck with your research for new alternative therapies for your cardiomyopathy. You are correct in that sotalol is a non-selective beta-blocker effective as an anti-arrhythmic agent for ventricular arrhythmias. Coreg has proven to be effective in some but not all cardiomyopathy patients. Some people they feel better on Coreg while many can attest to their intolerence of Coreg and their improvement on other beta-blockers. I believe it comes down to how you are tolerating your PVCs and how you feel physically and mentally about the frequency of your arrhythmia. I had almost reached the point of coming off Coreg and trying anything to decrease my PVCs. However, like I stated, increasing my Coreg (I wasn't on the max dose) worked for me. I still have frequent PVCs and a few runs of V-tach and some couplets, but they have decreased.
Are you on digoxin (Lanoxin)? This can affect PVCs. I also have learned over the years that some vitamins increased the frequency of my PVCs. Weird. I have finally found the right combination of vitamins and supplements that do not effect my PVCs. Too much magnesium can definitely cause me to have some strange looking arrhythmias that even the cardiologist couldn't decipher what they actually were. When I first experienced these flutterings I was taking an over the counter supplement that contained a high percentage of magnesium in it. After stopping it, my heart resumes its usual abnormal rhythm. Again, good luck with your research. Joy. firstname.lastname@example.org
Brin, December 20, 2004 - Hello everyone, I've not been here in some time but would like to know if anyone here knows of a good heart failure doctor in the Middletown, Ohio area. That is in southwest Ohio. I will be moving to that area in about a month and would be thankful for any help. I've had CHF for about 5-1/2 years now and am still doing well. Thanks goes a lot to the resources that can be found here. God bless everyone and I hope you all have a great Christmas. May the Lord's peace be with you and your family, Jon. email@example.com
Donna H, December 20, 2004 - Hello All, Since my husband Chuck was diagnosed with cardiomyopathy in 2000, he has had many ups and downs. Late last winter he began going into heart failure and couldn't seem to get well. After several hospital stays, the doctors decided that an ablation, ICD, and a new BiV pacemaker would help. Unfortunately the third lead couldn't be attached and he continued to be unwell through the remainder of the summer.
The doctors recommended that he do a transplant evaluation. The result was a trip to Richmond last week. The doctors there tested him but thought that they could get the third wire in place. They did surgery on Thursday and were successful. We go back in three months to see how much this helps or if some other intervention might be necessary.
While we were there we met one patient that had recieved a donor heart in October and two others who had LVADs. Although the alternatives aren't as good as being well, we were quite impressed with the strides that have been made. firstname.lastname@example.org
Shane R, December 20, 2004 - Hi everyone, My cardiologist's asking me about participating in a study for immunity modulation treatment and CHF. I found a lot on the Net about this, but most of it's in med-speak. I was wondering if anyone was familiar with this, and could explain in plain English, or may have experience with this treatment. I plan on participating - it couldn't be any worse - but am wondering what I'm getting in to. email@example.com
Jon's December 20 reply to Shane R's December 20, 2004 - Hi Shane, See www.chfpatients.com/heartbytes.htm#celacade. Let me know if this doesn't help. Jon.
Ken W's December 20 reply to Valerie R's December 17, 2004 - Hi Valerie, I have an ICD in my chest and had back (disc) surgery in September. The neurosurgeon was apprehensive and required me to get steroid shots first in an effort to avoid the surgery. It didn't work. The cardiologist said that he didn't want me to have the ICD shock my ventricles and wake me up during the surgery - bad news! What they did was jack up the pacer to make my heart beat at 85 beats per minute which he said would avoid the heart thinking of going into ventricular fibrillation. They did not "shut it off." Needless to say, I felt like I overdosed on coffee, but survived the operation quite well. The back pains after the surgery were a different story. I hope your cataract surgery goes well. I'll be praying for you. firstname.lastname@example.org
Carla, December 20, 2004 - Hi everybody, I just wanted to let everyone know that I had a very positive appointment with my cardiologist last week. My EF has improved from 25% to 35% and most of my heart enlargement has subsided. He feels very positive about my future recovery and - I hope you're sitting down - even suggested that we wait a while and "revisit" the possibility of a future pregnancy in a year or two! We were totally astonished since he's always been so against even discussing the possibility. He wanted me to have a tubal ligation right away so there weren't any accidents. This is the best Christmas present I could have received! I agree with Catherine that you can get better. The whole past year is a blur to me and I remember days that I had to look up to see bottom. However, with the love and support of family, friends, and an awesome heart failure specialist, the future does not look so gloomy. Thanks to all of you and may God continue to bless and strengthen each of you. Merry Christmas. email@example.com
Cheryl, December 21, 2004 - Hi everyone, I just received a message from my doctor about my stress test. The left side of my heart is enlarged but my rhythm is good. My doctor stated we "just need to keep my blood pressure down." I have low blood pressure anyway. I have had no explanation as to why my heart is enlarged and what I need to look for. Isn't two weeks out a little odd when you tell someone they have an enlarged heart? Should I get a second opinion or seek a cardiologist? Thanks for any input. I am a little confused. firstname.lastname@example.org
Jon's December 21 reply to Cheryl's December 21, 2004 - Hi Cheryl, Doctors never move fast in my experience. If I were in your shoes, I would seek a second opinion from a cardiologist, preferably a heart failure specialist. See www.chfpatients.com/docs/docs_list.htm and www.chfpatients.com/faq/doc.htm. Jon.
Peter S' December 21 reply to Elizabeth K's December 17, 2004 - Hi Elizabeth, Thank you for your detailed and thoughtful response to my earlier query on SCD and related studies. Jon's footnote to your 12/17 message was also appreciated. Some of this information I had, some I did not. Although I don't fit exactly into the MADIT criteria, I am like you, a possible ICD candidate. With a heart attack seven months ago and a MUGA-determined EF of 38%, I am neither in dangerous ground nor in the clear. With state of the art medication plus a good life style, I am hoping my EF will improve over time.
In the meantime I guess I would put myself in class 1 for CHF, being largely asymptomatic, at least with moderate exercise. My cardiologist in Florida appears well versed in CHF and I have reasonable faith in him. His view is that I should have an EP study and most probably an ICD, regardless of what the study says. With an EF under 40 he says the odds are that an ICD will help prolong life. I have no doubt as to his sincerity, but also recognize that in a way he also has to protect himself by raising the subject. This is why I want to do my own research and participate in a decision that, as Jon says, involves a permanent invasive device. An ICD can create infection, be inadvertently activated, or even defective or installed incorrectly, even though I gather problems are rare.
I don't mountain-bike like you, but I do drive through radar controlled tunnels, pass by metal detectors at airports and stores, and who knows if I am near invisible stereo speakers that will pass on unwanted information to a metal device tied into my heart. By training I am a lawyer and used to research. I will keep you posted, and again thanks for your reply. PeterSperl@cs.com
Jon's note: Please note that a sizeable percentage of ICD recipients suffer serious anxiety about potential shocks, many of whom did not believe they would become anxious pre-implant. It is not a small problem. There is also the SCD versus pump failure dilemma concerning mortality in heart failure patients.
Art McKellar's December 21 reply to Shane R's December 20, 2004 - Hi Shane, I am in the Vasogen clinical trial. The trade name is Celacade and is otherwise referred to as immune modulation therapy. I go in once a month. They draw blood. There is a treatment group and placebo group in the study. I don't know which I am. They take blood and expose it to heat, oxidation and ultraviolet light. They inject the "stressed" blood intramuscularly. E-mail me if you want more specific details about the study and what the treatment is intended to do.
The good things are that you get followed by a heart specialist and get your parking paid and lots of samples. I save about $60 a month in prescriptions. It takes about an hour and is free to you. I also think that it is a very safe trial. If it turns out that the treatment significantly helps CHF and PAD patients, then those in the study will receive the treatment until the FDA gives approval. email@example.com
Jon's December 21 reply to Art McKellar's December 21, 2004 - Hi Art, This is an interesting treatment concept that I have been following for a couple of years now. I was surprised that the published phase 2 trial benefits were so slender, considering the pumped-up press and medical community buzz about it. It will be fascinating to see if the phase 3 trial results are better. I hope they are! Jon.
Jeff Anderson, December 21, 2004 - Hi all, I was diagnosed with heart failure in December of 2003, and my numbers have responded well to medications. I am well-compensated at this time, though I have never felt all that well during treatment. I got a call yesterday that my recent bloodwork showed a very high reading for my thyroid. I am being referred to my primary care doctor for follow-up testing and possible referral to an endocrinologist. Any input on what is going on here? I do not take amiodarone. Is this somehow related to my CHF or medication therapy? Thanks. Jeff A. firstname.lastname@example.org
Norma, December 21, 2004 - Hi everyone, I had to go to my doctor for a clear different problem than CHF, of all things - boils on my bottom! He checked my chest, blood pressure and heart (I had gained 3 pounds), and put me on antibiotics. I never had anything like these before. It seems a couple of small ones got together into one big mass and are making my life pretty unconfortable! It is even working it's way over to where I had a heart catheterization, well it was. It is losing some of its strength already, just since yesterday. Has anyone else ever had boils or carbuncles with heart failure? Or is this just a run-of-the-mill thing? email@example.com
Amy's December 21 reply to Loretta D's December 17, 2004 - Loretta, Hi, I had gastric bypass surgery in November of 2002. I have lost 160 pounds. It's the best thing I've done for myself. Before surgery I was already being treated for V-tach. After surgery I was in an ICU for 3 days due to my heart and I was diagnosed with heart failure while there. I had no problems from the surgery itself. A couple of months later I had a heart cath done and my EF was 30% but now my EF is 60%. I believe it improved from a combination of meds and weight loss.
I just had a triple incisional hernia repair and abdominal plasty done in September of 2004. I was in the hospital for 10 days. I had no trouble with my heart failure or DCM. My heart doc is located in the same hospital where I had my surgery. He was called to my room once, due to my V-tach. Before surgery my PS had talked to my heart doc and got a letter explaining about me and his okay for the surgery, and what precautions to take during and after surgery.
If your doctors comunicate with each other, you should be just fine. Then they will know how much fluid to give you and that you can overload on fluids. Just make sure your surgeon knows about your heart and have your heart doc send him a letter. Also, your surgeon will keep you on telemetry for the time you're in the hospital. He should keep you on it. Good luck to you,, and enjoy your life as a thinner person. If you ever want to talk, feel free to e-mail me. Amy. firstname.lastname@example.org
Sherri's December 23 reply to Jon's December 21, 2004 - Hi Jon, I was just wondering about your note to Peter's message about ICDs. Do you have any info linked to this site about the the "SCD versus pump failure dilemma" that I could read up on? Thank you. email@example.com
Jon's December 23 reply to Sherri's December 23, 2004 - Hi Sherri, Many trials that study mortality in ICD patients with heart failure come up with the same dilemma: In CHFers with severe heart failure, sudden cardiac deaths prevented by ICD implant are partly offset by increased number of deaths from pump failure (seriously worsening heart failure), so that many CHFers trade one kind of death for another. Some info can be found at chfpatients.com/implants/icds.htm#madit, chfpatients.com/implants/icds.htm#icd-ef35, and chfpatients.com/implants/icds.htm#population. Also, it is not unusual for such trials to show increased hospitalizations for worsening heart failure in ICD recipients.
I like the way it is put at www.fac.org.ar/tcvc/llave/c027/newman.htm in section 1: "The single most important factor in post-MI patients remains the presence and degree of left ventricular systolic dysfunction expressed by the ejection fraction. The degree of functional impairment from heart failure, expressed by NYHA classification, is also a powerful predictor of cardiac death. The caveat is that, as the severity of heart failure increases, the proportion of deaths attrituble to pump failure also increases with a corresponding decrease in arrhythmia related sudden death. Over the years, electropharmacologically-guided invasive EP studies have fallen progressively out of favour, replaced by a degree of therapeutic nihilism. This is largely related to the remarkable technical and clinical advances achieved with empiric ICD deployment."
Also, whenever reading about mortality in any heart failure study, always note whether mortality benefits are stated as relative or absolute. A relative benefit of 10% is very small, while an absolute benefit of 10% is quite large. Most trials now only state relative benefit - this results from trial design and it also makes their research look better. Try using the following search string in a web search engine (not an index like Yahoo).
Kristen, December 23, 2004 - Hello, My mother-in-law just called to say that my father-in-law is in heart failure right now and that the doctors were going to try to get him out of it. What does that mean? What happens if they can't get him out of it? What is the chance doctors will be sucessful? He has already had a heart attack and all the surgeries that go along with it and he has had subsequent heart attacks. Thanks for any information. firstname.lastname@example.org
Amy's December 23 reply to Norma's December 21, 2004 - Hi Norma, Yes I have had boils in the past, one in a not so good location and the surgeon had to lance it open. Boils are caused by a staph bacteria that lots of people have living on their own skin and in their nose. You get the boils from a cut or from an infected hair folicle. Most times if you apply hot compresses on them, they will open on their own and drain. My grandson has been in the hospital 4 times for them this year. He is 2 years old and was having 2 to 5 a week, and at that age they should be opened and drained. There's really not much to worry about, just that they can be very paiful. Good luck! email@example.com
Peter's December 24 reply to Sherri's December 23, 2004 - Hi everyone, Further to Sherri's question to Jon regarding the "SCD versus pump failure" dilemma, thanks to Sherri for the good question and to Jon for his response. It is not taking me long to recognize that an ICD is not the answer for every CHFer who technically qualifies. For both clinical and personal reasons, decisions will vary, but research and understanding of the various studies is essential. I am still working at it. PeterSperl@cs.com
Peter, December 24, 2004 - Hi everyone, On another aspect of the ICD issue, does anyone have experience in having coverage either denied or approved by Medicare? Let me pass on wording from the Medicare web site, summarizing recent administrative rulings.
"CMS has determined that the evidence is adequate to conclude that an implantable cardioverter-defibrillator (ICD) is reasonable and necessary for the following: (1) Patients with ischemic dilated cardiomyopathy (IDCM), documented prior myocardial infarction (MI) and measured left ventricular ejection fraction (LVEF) < 30%; (2) Patients with nonischemic dilated cardiomyopathy (NIDCM) > 9 months and measured LVEF < 30%." PeterSperl@cs.com
Sandy, December 24, 2004 - Hi everybody, It's been 3 weeks now since my ICD has been implanted and I am feeling pretty good. The implant site is still somewhat sore. I have not had the pleasure of a zap and hopefully I can save that for the far future. I wanted to wish you Jon, and everyone here on the CHF site a happy new year. See you next year! firstname.lastname@example.org
Pat Y, December 24, 2004 - Hi everyone, Christmas Day is ten years since my diagnosis. So for those that wonder, yes, we do survive way past that five years so many of us hear about. My philosophy is that I am on the right side of the grass. Also I am vertical, breathing, and moving. Life is indeed good. PTYoumans@aol.com
Lowell P, December 26, 2004 - Hello all, I had a BNP of 625 after six months past surgery for bypass and a heart attack. My BNP was over 3500 shortly after the procedure and heart attack. It went gradually down until and about a month ago it was 625. I had it checked recently and it was 1150. According to Jon's site this is not too bad. According to other things I haved read, it is quite ominous. According to one article it says: "...a level of BNP greater than 230 pg/mL only have a 2% chance of surviving the event." The quote is by Louise Diehl-Oplinger. Something is wrong here but I don't know what. If that's the case a lot of us will die very shortly. I have increased my Lasix to 80mg from 40mg. I hope this helps. Lowell in Arizona. Lpepper3m@aol.com
Lowell P, December 26, 2004 - Dear Jon, My BNP has doubled since my last test. It has gone from 625 to 1100 pg/ml. I had been using enalapril but my creatinine level was rising and it had me worried so I quit the drug and my local cardiologist agreed. I went to a CHF specialist at the Mayo Clinic and his recommendation is to continue the ACE inhibitor (enalapril) and says that a creatinine level as high as 3 is okay and will not endanger my kidneys. I am increasing my Lasix to 80mg from 40mg per day. Should I continue the enalapril and will increasing the Lasix alone bring down my BNP? Thanks, Lowell Pepper. Lpepper3m@aol.com
Jon's December 26 reply to Lowell P's December 26, 2004 - Hi Lowell, Several things come to my mind. First, diuretics like Lasix and Demadex are not meant to "improve" your condition - they are meant to reduce symptoms. In a general way they are one and the same but then again, they are not. Only increase your Lasix if you are retaining more fluid. Increasing your Lasix just to bring down your BNP level will not work.
Second, your cardiologist is not on the ball. Monopril (fosinopril) is eliminated by both the kidneys and the liver so it reduces the load on your kidneys. It is also a once-a-day ACE inhibitor so it is convenient. Why not try that? You should also be on a beta-blocker, and possibly an aldosterone blocker like Inspra (eplerenone).
Whover said that BNP over 230 pg/ml means you're gonna die (if that's what they said - you didn't give an url) is just plain wrong. See the test result numbers in the charts at chfpatients.com/tests/bnp.htm. Be sure to read carefully so you know what group each table is reporting. I don't give a rat's behind how many degrees or titles a person has - if they don't get it right, they don't get it right.
Finally, numbers are just numbers. CHF specialists now admit that EF is not nearly as all-important as they once claimed. Other test result numbers also are not the whole story. A rising BNP is a valid concern, but the trend counts more than the actual number. Also, consider all your test results together instead of focusing on one. Consider EF, Vo2max, BNP, heart rate, blood pressure, etc,..., when trying to determine your overall "picture." A very important factor is how you feel. If you feel good, your odds are much better than if you don't feel good, regardless the numbers. Jon.
Sandy's December 26 reply to Pat Y's December 24, 2004 - Congratulations, Pat, what wonderful news! Can you share your secret? Keep doing what you have been doing these past 10 years. I'm so proud of you! email@example.com
Kurt, December 26, 2004 - Hi everyone, I am going to see a specialist about getting an ICD. I would like to hear from anyone who has one about the pros and cons. The specialist tells you one thing, but I would rather hear it from someone who actually has one. Thank you, Kurt. firstname.lastname@example.org
Norma's December 26 reply to Amy's December 23, 2004 - Thanks Amy, They are very painful! If this doesn't clear up with these antibiotics, I am supposed to let the doctor know but I think I will go elsewhere. email@example.com
Tony Myrick, December 27, 2004 - Hello, I hope the holidays are good to all the CHFers out there. I have been feeling bad for the past few days and I have had hiccups constantly for 4 days now. I mean non-stop hiccups that stop me from eating. I already have trouble talking because of the shortness of breath and when you add in the hiccups and it's the holidays it is really frustrating.
Could the cardiomyopathy with a low ejection fraction of 20% cause this?. About a month ago when I a few bad days I had hiccups like I have now. I timed my hiccups and I do it 5 times every 15 seconds or about 20 times a minute. My wife can't sleep with me because I hiccup in my sleep. I would like to hear from anyone who has had hiccups like this. Thanks, Tony M. firstname.lastname@example.org
Keith Lundy, December 27, 2004 - Hello, I would like to thank those of you who responded to my post last month. As of 12/23/04, I am now the proud owner of a Medtronic Insync Maximo implantable ICD with Cardiac Resynchronization Therapy. The results are amazing. My hospital stay was overnight. The nurse has been with the doctor for 9 years and my cardiologist has done these implants since her Fellowship at Loma Linda University International Heart Institute, where she is Codirector of the electrophysiology lab and an associate professor. The medtronics technican was a cath lab employee at the hospital for 15 years and has assisted the electrophysiologist on implants since 1990. I go for my wound check on 12/29/04. My healing and energy level are wonderful. email@example.com
Bernard's December 27 reply to Pat Y's December 24, 2004 - Hi everyone, My nine year CHF anniversary will be this coming April. I am now also a cancer survivor. My right kidney was removed last June and chemo finished six weeks ago. Lots of medicine and many prayers. Thank God for good doctors and Medicare. I am doing well now that the chemo is over. Bernard. firstname.lastname@example.org
Ann L's December 28 reply to Bernard's December 27, 2004 - Hi Bernard, It's so good to have the chemo behind you. Congratulations. Now tell me, how did the heart hold up? email@example.com
Mary Anne, December 28, 2004 - Hello, I am scheduled for endovascular repair of abdominal aneurysm 01/31. I have been on amiodarone (Cordarone) since 03/2004 for ventricular fibrillation and I want to go off amiodarone, but what is the general thinking on this? Should I ask my cardio doc to wean me off or am I better to stay with it through surgery? I am on Coumadin (warfarin) for artificial mitral valve and leaky valves in general. I have heart failure but am well compensated I believe. Any input? Thanks. firstname.lastname@example.org
James, December 28, 2004 - Hi all, As anyone who watches television knows, we here in the Midwest were hammered with a rather unpleasant snow storm starting Wednesday. Some areas north of us picked up a happy 2 feet of snow while others took less. Here in Cincinnati, we took on about 9 to 12 inches of snow and then we were supposed to get another 8 to 12 inches of snow but unfortunately it came in the form of sleet rather than snow so we ended up with a couple of inches of ice on top of that 9 to 12 inches of snow - not fun. To make matters worse, we picked up an artic blast and the temperatures dropped to zero and below (not wind chills, actual temperature. The city came to a near standstill. Most counties declared a level 3 snow emergency which meant that, by law, only road crews and emergency personnel were allowed on the roadways.
Plows have been largely useless to residential streets although they finally had the main thoroughfares under control by Sunday, after the holidays. We were unable to start digging out until Friday afternoon and by then it was still only 10 degrees. On Saturday night we picked up another inch or two of the fluffy stuff to top it all off.
As some of you may know, I have congestive heart failure. A little over a year ago, my EF was 20%, my left ventricle was at 6.5cm, and I had significant shortness of breath. I couldn't walk the 50 feet from our driveway to the front door without taking a break. Then on Halloween of 2003, I had a biventricular pacer implanted. At my last appointment, my EF was 45% by echo and the left ventricle was down to about 6cm.
Friday afternoon, I spent 2 hours straight shoveling snow and ice from the driveway. Our driveway is pretty good sized as well. This was 2 hours of good, hearty shoveling, breaking through 2 or more inches of ice and then moving a foot of snow, along with the ice, to a dumping spot about 15 feet away, all on an incline of about 30 degrees. On Sunday I reshoveled the driveway and did the 50 feet of walkway leading up to the house for another couple of hours of work. In both cases, I was tired when I finished but I certainly wasn't wiped out and I recovered quickly.
I still have occasional shortness of breath, especially when I overdo it, eat too much, or have taken on too much sodium and fluids. There are still occasional bad days. However, they are far fewer than in the past and hopefully, the degree to which I've recovered so far will offer a little bit of hope to some others. email@example.com
Joe's December 29 reply to James' December 28, 2004 - Hi James, Congratulations on shoveling so much snow. I had a friend in Iowa who had two stents put in. Two weeks later he had a good snow storm so he went out to shovel. Of course the stents slipped and cut off the oxygen to his brain. The moral is that a plow service is also reasonable. <g> firstname.lastname@example.org
Margaret D's December 29 reply to James' December 28, 2004 - Goodness James, I'm tired and short of breath just listening to your tales of shoveling snow! I grew up in Cincinatti and was still there for the blizzard of 1978, so I remember well! That is such good news about your BiV pacer. I wish we could all qualify for it and reap the benefits that you have. I hope you have continued good health. email@example.com
Norma's December 29 reply to James' December 28, 2004 - Wow James, That is great! Yes, we can have a wonderful, good life after being diagnosed with CHF! Keep up the good job of doing what you can do to heal yourself. God bless! firstname.lastname@example.org
Tunny's December 29 reply to James' December 28, 2004 - Hi James, That's fantastic! You are lots of encouragement since I hope to get to where you are now. I have shortness of breath and certainly would look forward to shoveling snow as you did. I really got excited to think of you being able to shovel snow. Thanks again for the info. email@example.com
Sandy, December 29, 2004 - Hi all, Does anyone know of a site like this one but about Hepatitis C? I have a friend that is suffering from this disease and needs a lot of info. Thanks to all. firstname.lastname@example.org
Sandy's December 29 reply to James' December 28, 2004 - Congratulations, James. It's so good to hear how you have stabilized your condition. However, please be careful with all that snow shoveling. I'm from the Midwest and know that even healthy people have heart attacks when shoveling snow! email@example.com
Nancy S' December 29 reply to James' December 28, 2004 - Hi James, I'm thrilled to hear of your success with the biventricular pacer. I may have talked to you before you had it but I also had one implanted in October of 2002 (I think). Anyway, I am as much improved as you are. Sometimes I still have bad days or a few days at a time and I get down but I always bounce back! Not long ago I thought I was sliding backwards for awhile but I got over it and am very much back to living a nearly normal life once again. I highly recommend this to anyone who is a candidate for it. It's made a 90% difference in my life. God bless you all. Nancy. firstname.lastname@example.org
Arthur N's December 29 reply to Keith Lundy's December 27, 2004 - Hi, I also had a Medtronic Insynch Maximo ICD with resynchronization placed on December 3rd. My results were amazingly similar to to yours except that they couldn't get in through the coronary sinus (blood vessel) to place the third lead but my EP doc found a place outside the right ventricle for the third pacemaker lead. Changes were instantaneous and I feel like a new person.
I stayed overnight at the hospital and recovery was totally noneventful. This device is a gem for some CHFers. The basic criteria for implant is slass 3 or 4 heart failure with prolonged QRS wave and an EF of less than 30 to 35%. I think that anyone who reads this message and meets the criteria should have a serious talk with their cardiologist. It might change their life. Aenaval@aol.com
Jack D's December 30 reply to Sandy's December 29, 2004 - Hi Sandy, Your friend doesn't really need a web site about HepC. Your friend needs a doctor. There are a few web sites that deal truthfully with the disease but most of them give you false information so your friend will go out and waste money on useless and dangerous herbal garbage. I had Hep-C. Please note the "had." I am one of the few for which therapy actually worked. There is only one therapy: Interferon and Riboviran.
Riboviran wasn't available when I went through therapy so I only used Interferon. It was 18 months of treatment injecting my leg three times a week. If your friend wants a real chance to be rid of the disease, then getting started with a GI (gastointestinal) doc is the only possibility of taking care of it. As far as suffering from the disease - since there are virtually no symptoms it's kind of hard to suffer from it. The only way you even find out that you have the disease is to get tested for it.
People who suffer are the ones who find out that they have it and then attribute every new ache and pain to the disease. The suffering doesn't begin until you start on the treatment and the symptoms are really side effects from the drugs. Supposedly, people first infected with HCV commonly get mild flu-like symptoms with aches, fever, and chills but I think that's got to be nonsense because it takes 20 years or more for the infection to surface so there's no possible way for anybody to determine when they first got infected. email@example.com
Norma, December 30, 2004 - Hello all you readers of this forum and especially to Jon, I have a question I hope someone can answer. Lately, I seem to get a sort of virus with low fever every two weeks or so, which puts me out of action and feeling very fatigued for a few days. By the time I recover and have a good week, I seem to end right back with another bout. This has only happened since arriving in Florida in late October. We suffered no damage to our condo, so there is no trace of mold, but the weather has been very up and down and my feeling is this may be the cause. Any other ideas? Norma. firstname.lastname@example.org
Peter's December 30 reply to James' December 28, 2004 - Hello, Much as many readers may feel glad you have the energy you do (and all power to you), and though they appreciate all the detailed weather news from Cincinnati, I must say I consider your example of heavy snow shoveling, even though as an improving CHFer, as totally inappropriate if it encourages others to do the same. PeterSperl@cs.com
Sandy's December 30 reply to Jack D's December 30, 2004 - Hi Jack, Thank you so much for your reply. I sent it on to my friend and yes, she has seen two doctors in the past 3 years and wants to find a way to help herself. What wonderful news, your being helped! Good luck to you. email@example.com
Brenda, December 30, 2004 - Hi everyone, I was just looking for some info on congestive heart failure and found this site. I am 32 years old and was diagnosed in January of 2004. This last November I was hospitalized with a pulmonary embolism. Is this related? I also have hyperthyroidism. Any replies would help. Thank you. Brenda. firstname.lastname@example.org
Vicki James' December 30 reply to Giorg's December 18, 2004 - Hello Giorg, Do you know if anything can be done to correct the Laminine A/C gene? My dad died with viral cardimyopathy and so have 4 to 6 of his other siblings. There were 13 children so I'm not sure of the others. I know I have a 50% chance of passing this defect on to my son and I would love to know if anything can be done to correct this so he won't get dilated cardiomyopathy. I'd be happy with anything you can tell me about this. I'm a class 3 but doing fairly well with my meds. Thanks for your help. email@example.com
Vicki James' December 30 reply to Sandra S' December 20, 2004 - Hi Sandra, First of all, I'd find a more sympathic CHF specialist. In Tennessee one of the things required for disability is an EF of 30% or lower. My husband is trying to get on disability because of depression and we're still in the reviewing process. He really messed his back up and wants to put off surgery as long as possible. He can't do anything like he use to do. This is really working with his mind. He's so depressed he doesn't want to get out of bed in the morning.
I'm supposed to be up for review in January and I am worried my EF is up to 30 or 35% but I still feel bad and have to take naps to rest up. I am still short of breath, etc. What state do you live in? Let me know how it goes. Good luck! You might want to go to the SSD page. It has a link to the manual the examiners actually use to determine disability cases and it tells them what to look for. firstname.lastname@example.org
Robert, December 31, 2004 - Hello, It seems I stopped smoking too late and have lung cancer. Does anyone know if a CHFer can undergo such an operation? Bless you all. email@example.com
Andy, December 31, 2004 - Hi all, This is just to share my experience. Let's say it's a cautionary tale and a lesson learned. I was diagnosed with DCM last December and had an ICD implanted last May. The next several months were uneventful heart-failure-wise until I had a sudden bout with severe abdominal pain that turned out to be an inflamed gall bladder. After consultation, I decided to have it removed.
At this point, I was no longer being treated at the original hospital where I'd been diagnosed but at a second hospital where I had found a cardiologist I preferred. After informing all involved that I had an ICD and telling them it had to be disabled during surgery, we proceeded with surgery. I had a sinking feeling the day of surgery because the technician who was supposed to disable the device was late, and eventually they decided to put me under and turn it off when he arrived. All seemingly went well, and 4 days later I was back at the gym. Suddenly, several minutes into a good cardio workout, the device suddenly fired. Quite a shock, no pun intended, since I had felt completely fine.
I spent the rest of the day depressed about the episode and went in immediately to my original doctor to have the readings pulled from the device. Imagine my surprise when I learned the only reason it had fired was that it had been incorrectly reset to deliver a shock once my heart reached 125 bpm (previously it had been set for 235 bpm). Evidently the original readings were never requested from my previous physician, nor were they taken when the device was turned off.
These events occured at an extremely reputable hospital in the Pacific Northwest in the USA. It wasn't the end of the world and thankfully no harm was done, but things could have easily gone otherwise. I highly recommend this experience if anyone feels they really need a lot of medical attention since I heard from more doctors and hospital staff in the subsequent several days than I'd been in contact with the previous 10 months in their entirety! <g> Andy@mrdatacorp.com
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.