The paperwork never ends The Archives
February 1-15, 2007 Archive Index CHFpatients.com

Jon 2-2     delays and unexpected web site costs
 
Jacky B 2-2     seek info on CRT pacing and life span
 
Nancy S' 2-2 reply to Vanessa C's 1-24     antidepressants and to Lori A
 
Scott B 2-2     seek CHF doc in Upland, California, USA
 
Terry S 2-2     seek ICD experiences
 
Hope M's 2-2 reply to Oden G's 1-27     ICD removal thoughts
 
Sharon J W 2-2     insomnia is driving me nuts!
 
Mary H's 2-3 reply to Sharon J W's 2-2     insomnia and pills
 
Jon 2-3     temporary way to donate
 
Georgia W 2-4     swollen throat and some bleeding
 
Tom S' 2-4 reply to Terry S' 2-2     implanted device experience
 
David W's 2-4 reply to Terry S' 2-2     implanted device experience
 
Anne D 2-4     CHF but no insurance - what can I do?
 
Jon R 2-4     changing when I take my meds - help!
 
William J's 2-4 reply to Jon's 1-30     everyone please try to donate
 
Jamie L's 2-5 reply to Georgia W's 2-4     watch out for cold temperatures
 
Susan C 2-6     low pressure, dizziness, lightheadedness
 
Sharon L's 2-6 reply to Jack D's 1-30     Splenda, life style
 
Nancy S' 2-6 reply to Hope's 2-2     implanted device battery replacement
 
Wendy P's 2-6 reply to Terry's 2-2     implanted device experience
 
Georgia W 2-6     update on swollen throat
 
Michele B 2-6     I feel good, can I really be sick?
 
William J's 2-6 reply to Anne D's 2-4     ideas on medical assistance
 
Georgia W's 2-8 reply to Anne D's 2-4     getting financial assistance
 
Michele B's 2-8 reply to Anne D's 2-4     getting financial assistance
 
Ken T's 2-8 reply to Terry S' 2-2     implanted device experience
 
Karen K's 2-8 reply to Michele B's 2-6     CHF meds, pain meds
 
Marty C 2-8     should I be taking a diuretic?
 
Teresa M 2-8     questions about illness, Coreg, and more
 
Sue L 2-8     seek experiences with Evista and CHF
 
Hope M's 2-8 reply to Nancy S' 2-6     Medtronic ICD battery replacement
 
Linda K's 2-8 reply to Sharon L's 2-6     chemicals and health
 
Patrick S 2-8     seek cardiologist in New York City, USA
 
Sharon S 2-9     seek biventricular pacemaker experiences
 
Sharon S 2-12     also, what about ability to exercise?
 
Debra S' 2-12 reply to Sharon S' 2-9     diuretic and weight gain experience
 
Tom S' 2-12 reply to Sharon S' 2-9     biventricular pacer and ICD experience
 
Georgia W 2-12     scary chest pain episode
 
Lowell P 2-12     the up and down of CHF - seek advice
 
Bob M 2-12     seek experiences with sarcoidosis, prednisone and CHF
 
Mary C 2-12     going off my diet hurt me
 
Cheryl S 2-12     seek info on device and leads
 
Roger H 2-12     will be in chelation trial
 
Anne D 2-12     thank you all for your help
 
Tony M 2-12     update, CPAP, apnea and heart function
 
Nancy S' 2-12 reply to Hope's 2-8     also to Sharon
 
Lauren A's 2-12 reply to Teresa M's 2-8     going off meds experience
 
John S 2-14     ICD horror story but good ending - questions
 
Sue H 2-14     no more a-fib, should he go off Coumadin?
 
Sharon S 2-14     thank you all for device experiences & more
 
Kelly O 2-14     seek experiences with RF ablation, pacemakers, arrhythmia & more
 
Nancy P 2-14     could really use some advice here - I'm scared
 
Jon 2-14     what's up with me and the site - update
 


Jon, February 2, 2007 - Hi all, Apologies for the delay but my fingers gave out just before I did Jack's message and that night I had a serious drug interaction problem, from which I'm still shaky. I'm trying to get caught up today but may not make it.
     I'm also dipping into what funds we have for speech software so I can start getting used to doing the forum with it. Unfortunately, I also have to subscribe to a service that costs 200 dollars a year to keep the site running effectively. If you've considered donating, now would be a good time for us. To those who donate, especially on a regular basis, thank you for your unflagging support - we appreciate it more than you can ever know. Jon.


Jacky B, February 2, 2007 - Hi Jon, I hope you are beginning to feel better. I have a new cardiologist. My other one went to California to work with celebrities. I had a brief visit with this one in March of 2006, and all my numbers were good and I felt okay so he said I should have another echo in October of 2006 and then to follow up with my PCP. I did this and my EF was 25 to 30%, a drop of 20% in one year. My PCP sent me back to the cardiologist and he said I needed CRT-D.
     I was a bit taken aback as, although this has been mentioned in the past, I didn't think I had reached that stage. Just a reminder: I have idiopathic dilated cardiomyopathy, LBBB, PVCs and NSVT. I am getting a second opinion at the Texas Heart Institute but have a question.
     Does the CRT do anything but improve quality of life? I can cope with my quality of life at the moment and would only be interested if it would prolong both my quality and length of life. Jacky. jackymwb@earthlink.net
 
Jon's note: Jacky, first be sure to get a type of echo called TDI (see the New Page) to be sure you will benefit from CRT. If this shows that your heart's chambers are not beating as a team, yes, you are likely (but not certain) too see prolonged life span as well as better life quality.


Nancy S' February 2 reply to Vanessa C's January 24, 2007 - Hi Vanessa, Like many others I took 4 different antidepressants before they got the right one. I now take a fairly new one which is Cymbalta. My doctor told me that it works for both depression and as an anti-anxiety drug. It's working really well for me. I was in such a depressed state that I had to go for counselling.
     Lori A, my doctor wouldn't give me any sleeping pills. I was already on skelaxin for rheumatoid arthritis and she added Flexeril (up to 4 a night) and told me I could take it or Benadryl. I found that 2 Flexiril and a benydryl help me relax and go to sleep. I hope everyone is feeling good and happy tonight. Nancy. ns1@alltel.net
 
Jon's note: Please note that Cymbalta is often effective as pain relief for peripheral neuropathy, which causes foot and lower leg pain.


Scott B, February 2, 2007 - Hello, I'm 40 years old and have just been diagnosed with CHF. It was a very frightening experience and I'm still reeling a little from it. The hospital's cardiologist didn't help matters much. His explanations were short, confusing, and left me unsure of my prognosis. I have a follow-up with him next week, but I'm thinking I might need to find a different doctor to travel this road with me. I live in Upland, California, USA. Does anyone have a CHF specialist in the area they can recommend? riscobo@yahoo.com


Terry S, February 2, 2007 - Hi, My mom just got a pacemaker and ICD yesterday. Is there anything that anyone who has a pacemaker now discovered that the doctors did not tell you? I want to make sure that my mom is prepared for what lies ahead for her. Thank you very much. Terry. my2_peaches@yahoo.com


Hope M's February 2 reply to Oden G's January 27, 2007 - Hi, I have no idea whether you need an ICD or not, but ICDs and pacemakers are taken out all the time. Their batteries have a limited life span (3 to 6 years or so), so when the battery gets low the device is completely removed and a new ICD or pacemaker is put in. Usually the leads are left in place unless they have become dislodged, and the leads are reconnected to the new device.
     If it were me and if I decided to have the ICD removed, I would definitely go to a doctor who has a lot of experience in replacing these devices. It shouldn't be a problem to find such a doctor. hlmcneil@suddenlink.net


Sharon J W, February 2, 2007 - Hi Jon, The last time I visited the site was years ago. I am glad to see you still have it. Good news - my EF went from 20 to 35% with my last pacemaker/ICD (a BiV device). I'm one of the lucky ones.
     My cardiomyopathy is stable although the last pacemaker/ICD was my fourth in 8 years. Don't ask, just all kinds of problems! I have been 100% paced since my cardiac arrest in 1994 and am doing okay except for multiple drug reactions and interactions, and debilitating insomnia. I meditate, have changed bedtime routines and done everything right - except sleep. The sleep deprivation is so maddening. I know it is from the meds but I apparently need them. Or do I need all of them? Hmmm. innerpeas_68@yahoo.com


Mary H's February 3 reply to Sharon J W's February 2, 2007 - Hi Sharon, Some drugs cause insomnia. Read the small print. Celexa is the worst to try to sleep with so now I use a sleeping pill. I think most of my pills are to prevent the reaction to the other pills. I do need all of them, at least at the moment. MHCARRS@aol.com


Jon, February 3, 2007 - For those who want to donate just for the speech software and link-checking service, please add a note to your donation, stating you want the entire donation used for those things. Since these 2 items add up to 1000 dollars US, this will help us purchase them faster. However, please only do this for the next 7 days, no more. If you do it after that, I can't use donations for other web site needs. Thanks, Jon.


Georgia W, February 4, 2007 - Hi, I hope all are doing well. I am very freaked out. I am final stage CHF and all the heart doctors gave up on me. I am currently working with my general doctor. He is a marvel. He is the one that put me on Coreg. I was okay to the point when I woke up this morning and could hardly swallow. My glottis is swollen and was bleeding. I think. So what can this be? Has anyone else had this? wgrg417@AOL.COM
 
Jon's note: This could be angioedema, which is potentially fatal and is usually a drug reaction, often to ACE inhibitors. Go to a hospital emergency room and have a list of all your meds or just take the pill bottles with you!


Tom S' February 4 reply to Terry S' February 2, 2007 - Hi Terry, She's already been through the hard part. I know I had some discomfort in the area of the implanted (April 28, 2006) BiV pacer/ICD device but haven't had any real problems in the last couple of months.
     So far I have been in for 3 check-ups and repacing on 2 occaisions with one check-up involving the sonographic gear. I am scheduled to go in February 14, 2007 for some adjustment, which is all done non-invasively. Basically, a large donut-looking plastic-enclosed coil is laid on the surface of the skin over the device and it dumps volumes of data about the condition of the device as well as the heart. It is sort of a mini-Holter device and will tell the technician almost immediately if there were any "episodes" in which my heart had been zapped and other pertinent data. So far I haven't been zapped but the technician has been adjusting my heart rate to improve overall function on 3 different occasions.
     Otherwise she might as well forget she even has it. I like mine just fine and believe it has helped me in achieving some significant fluid weight loss. bigheart@muchomail.com


David W's February 4 reply to Terry S' February 2, 2007 - Hi, I had a dual chamber pacemaker implanted in June. I think it does help more than it hurts, but one thing I dont think the docs are aware of is that sometimes parts of our hearts are so thin and weak the leads don't stay in well. The bottom part of my heart is bad and the lead came out and poked a hole in my heart and I almost bled out. The surgeon patched my leak and I am fine but the defib part of my pacer had to be disconnected as that part of my heart is just too fragile.
     Just be aware of that and if your mom gets an odd feeling like extreme bloat on one side, the pacemaker could have poked a hole in her heart. This is a very rare condition but those of us with weak and pretty near dead parts of our hearts, it happens more often with us. Just be cautious. wilsond537@aol.com


Anne D, February 4, 2007 - Hello, I'm new here and just trying to figure things out. I'm 40 years old and was diagnosed with cardiomyopathy two days ago. I have an average EF of 40%. It drops into the 30s with exercise.
     My doctor does not know how I got this. It may even have been a virus. I also have lupus that has been in remission for about 4 years but we wonder if maybe it was messing with my heart without me being aware of it. My resting heart rate was 120 and I have a lot of skipped beats that my doctor said he is concerned about. I'm having a T-wave alternans test next week to see if I'm at risk for something called sudden cardiac death.
     I'm totally shocked that this is happening. I've already had a lot of testing and still have this t-wave thing next week. What I'm stressing about the most is I have no health insurance right now! I had insurance up until 5 months ago when we moved to a different state. My husband is self-employed and I stay home with my 2-year-old daughter. When we tried to get insurance here they rejected me due to past infertility treatments. We applied with another company and got accepted, but with such expensive rates that we just couldn't afford it. At that time, my husband told me that we'd have to wait awhile for insurance. He wasn't worried because he said neither of us go to doctors much and we could afford to be self-pay for occasional visits here and there until we could afford the higher rates. Well, now I just got diagnosed with cardiomyopathy!
     Is anyone else in this position? If so, what did you do? Can someone like me qualify for Social Security disability, even though I've not been working, but staying home with our toddler, or can I get Medicare? Or are we just going to drown in medical debt and possibly not be able to get adequare medical treatment? No one is going to give me medical insurance now. There is a state pool for health insurance there but it also is very expensive and will not pay for pre-existing conditions for one year.
     I'm really scared - of both this disease and of what will happen to us financially. Thanks for any info you can share. Anne. anne@freedombuilders.org


Jon R, February 4, 2007 - Hi, I have recently been given the okay to go back to work and I work early in the morning. So I asked how to go about adjusting my Coreg and lisinopril times. My CHF specialist said to just go ahead and change them to fit my job. I am on 6.25mg Coreg twice a day and lisinopril at 5mg once a day. My times were Coreg at 11:30 AM then again at 11:30 PM, and lisinopril at 10:30 PM. I switched them to Coreg at 7:30 AM and again 12 hours later, with lisinopril at 6:30 PM.
     They told me I would not notice any side effects and they were wrong. It seems like I am experiencing all the side effects I had when I first started taking my meds. I am not as fatigued as I first was but none the less feel bad. I'm taking the long way round to asking my question! I thought maybe there would be a gradual adjustment on my med times? I now feel as though I just messed up a good thing because I was feeling good, not great.
     I was told that I am in stabilized heart failure, which to me seems like an oxymoron. Is this a normal way to adjust medication? jreimer70@yahoo.com
 
Jon's note: I always space my ACE inhibitor at least 2 to 3 hours away from when I take my beta-blocker. Taking second dose Coreg immediately before bed helps cut down side effects, as does always eating before taking it.


William J's February 4 reply to Jon's January 30, 2007 - Hi Jon, I am sorry to read that you have so many physical disabilities - CHF and its effects on the body are enough to deal with. I admire your courage! I am sending a check to be used for your speech software and link checking. You have done great work on your web site over the years and it a great source of information. I would hate to see it have to be removed.
     I would ask that all those who interact on the heart forum as well as those many, many individuals who read the wealth of information provided here try and make a donation of some sort. This is a wonderful web site and I hope that those who visit this site will donate to it. Budjoy4@aol.com


Jamie L's February 5 reply to Georgia W's February 4, 2007 - Hi Georgia W, I'm praying for you. It is very cold here with the wind chill at 17 degrees F. I'm glad I can stay inside because our school is closed. Be careful everyone of the very cold temperatures. barrylevan@sbcglobal.net


Susan C, February 6, 2007 - Hi all, I've been on heart meds since November of 2006: 12.5mg Coreg BID, furosemide at 40mg in the morning and 20mg in the evening, and fosinopril at 40mg daily. I've been diagnosed with anemia and am on meds for osteoporosis. I'm female, age 68 and in relatively good shape. I am an avid walker, usually doing a 10k walk on Saturdays and I walk probably 25 minutes to an hour 5 other days each week. When I work part-time, it's a physical work such as mopping, bending, stooping, crouching, etc.
     Twice in the past few months I have had some pretty serious dizziness and lightheadedness. It's been going on for the past 5 days now, usually after my morning Coreg. I've been visiting out-of-state at my sister's and she has a blood pressure machine, so I have been able to check my blood pressure at these times. It has been around 75/47 up to 82/44. Other times of the day it is around 87/58. It's not the machine because my sister and her husband use it too and hers is on the high side and his is in the normal range.
     Does anybody have any ideas here? tomsmom39@yahoo.com
 
Jon's note: Have you considered a switch to Toprol-XL?


Sharon L's February 6 reply to Jack D's January 30, 2007 - Thanks for all your math, Jack. I guess the real reason I went off Splenda is that I'm just trying to cut down the number of chemicals I am ingesting. This may sound crazy, but might also be a sound strategy. We are surrounded by chemicals.
     My friend's daughter recently was pregnant and refused to take one aspirin or Tylenol during her pregnancy, yet her crazy mother was spraying the room with some kind of anti-smell stuff full of wacky chemicals, perfumes, and who knows what else because a dog had been in there. Can you be too careful?
     There are some proven side effects to some of the artificial sweeteners like maltitol (you know there is if they put a caution on the package) and I was seeing if getting away from Splenda changed anything for me. I'm not a conspiracy theorist, but have taken some food science classes and I read lots of stuff about food, having worked at the Department of Agriculture regarding all the growth hormones and such that are in meats. So I am just being cautious. There is also a history of cancer in my family. lyons@sasktel.net


Nancy S' February 6 reply to Hope's February 2, 2007 - Hi Hope, I just wanted to mention that my cardiac surgeon and my CHF specialist both told me that when my battery gets close to running out they will just slit the pouch they made and replace only the battery. Mine has been in about 5 years. It's a BiV pacemaker. From what I've read, some companies have more problems with their devices than others. Mine is a Medtronic and it is tested each time I go for a checkup, which is every 6 months now. Nancy. ns1@alltel.net


Wendy P's February 6 reply to Terry's February 2, 2007 - Hi Terry, Getting the ICD was not a bad experience for me. I had very little pain or discomfort. My only problem I had was about a week or so after insertion, I had an allergic reaction to the insertion. It became very itchy and reddened at the site. The doctor just had me take allergy pills when this occurred and after about a month and a half, the problem went away. The doctor said this is quite a common problem. Not everyone gets this but if your mom does, just have her ask the doctor what allergy medication can she take. Best of luck. Wendy. woddlef@shaw.ca


Georgia W, February 6, 2007 - Hi, I called the doctors office. It isn't my glottis - it is was my uvula, that little thing that hangs down in your throat, bothering me. I gargled with salt water several times and it has gone down. Crazy stuff, I swear it just doesn't stop. It's always something. <lol> wgrg417@aol.com


Michele B, February 6, 2007 - Hello, I'm 38 years old and was hospitalized the week before Christmas with pneumonia and CHF. They said my EF was 25 to 30% after running an echo. I've had a heart catheterization and everything was fine. I feel much better and I'm taking Coreg, lisinopril, K-dur, Lasix, and Lanoxin. I don't know what my current EF number is, but I'm assuming since I feel much better that it has to be better.
     My cardioligist is not very informative but I'm assumming no news is good news. He's talking about adjusting my meds and placing me on another medicine. I guess I'm wondering if I feel so much better, should I begin taking another medication. I really don't feel sick except for extreme fatigue at times. I surely don't feel sick enough to be taking 6 different types of medicine. CHF sounds horrible and I really don't feel like I'm sick enough for such a diagnosis. michelebrown68@yahoo.com


Willliam J's February 6 reply to Anne D's February 4, 2007 - Dear Anne D, I am sorry to read about your predicament at age 40. It appears there are numerous problems. I am not a doctor nor a social advisor but I thought I would provide some general knowledge. Your known problems appear to be a recent diagnosis of cardiomyopathy with cause unknown (cardiomyopathy is a general term referring to an underlying heart problem causing CHF, which is generally is a chronic disease and should not be taken lightly); you have no health insurance; you are a stay at home mom with a 2 year old child; you have a resting heart beat of 120 with an apparent irregular heart beat.
     Unfortunately, lack of health insurance, as you are aware, is not good. Medicare is specifically for people over 65 or people on Social Security Disability, with rare exceptions. SSD does require a working background and it seems as though it can be a battle to obtain. Maybe some of the people on this forum who have this service can give more specific information.
     Medicaid might be the avenue to pursue. It is a state based operation with its own set of requirements, the most prominent appearing to be financial necessity. You should consider making an appointment with your local department of social services and Social Security services since you may be eligible for Medicaid or they might lead you to some other medical assistance plan. You can read about such services on the Internet, which is fine but a direct in-person visit will get better results.
     Anne, heart failure is something you can't walk away from. You need medical assistance. Don't be discouraged. With persistence and some work you may be able to find an agency that can help you with your medical and financial problems. I will remember you and your family in my prayers. Good luck! Budjoy4@aol.com


Georgia W's February 8 reply to Anne D's February 4, 2007 - Hi Anne, This is so hard. Through all my struggles I wound up homeless twice. If you do not qualify for SSD maybe SSI is for you. The main thing is you need a doctor to back you up. After 5 years and many heart procedures, I started screaming at the doctor, "What am I supposed to do?!" He said to calm down and he would help me get disability and he did within a month. Go figure. wgrg417@aol.com
 
Jon's note: See our SSD page for the exact wording that works best from a doctor for getting SSD.


Michele B's February 8 reply to Anne D's February 4, 2007 - Hi Anne, I am a Medicaid worker in the state of North Carolina. I'm not sure if all states have the same rules, but there is a Medicaid program that is specifically for the medically needy (you have to have a child in your home under the age of 19). If family income causes you to be ineligible for regular Medicaid, we figure out what a deductible would be based on your family income. You can meet this deductible with old unpaid medical bills that date back two years or any unpaid medical bill that you have made a payment on in the last two years. An impatient hospital stay automatically meets your family's deductible. Since Medicaid is federally funded, I'm almost sure all states have a plan like that. Don't hold me to it though, I only know North Carolina's rules. michelebrown68@yahoo.com


Ken T's February 8 reply to Terry S' February 2, 2007 - Hi Terry, I am a 49 year old male and the one thing I was not prepared for when I got my pacemaker/ICD was the time it took to recuperate. My doctor said I could go back to my normal physical activity after I adjusted to the pacemaker. I thought that would be a week or so, and it turned out to be a few months for me. Tell your mother it will take time to get used to the device. Good luck. ktre3560@sbcglobal.net


Karen K's February 8 reply to Michele B's February 6, 2007 - Hi Michele, I was diagnosed with cardiomyopathy after going into CHF in 1991. I was 49 at the time. I had a cardiac cath and was put on all the usual meds. I was in the hospital for a week following my diagnosis but returned to work the following week because no one told me not to do so. I'm still working part-time and I also feel fairly well most of the time. I'm considered well-compensated.
     I believe I'm correct in telling you that you had CHF as a result of cardiomyopathy. You are likely not now in CHF but will always need to be treated for the cardiomyopathy. I know it seems like a lot of pills. Many times I've wished I could toss them all into a blender with a little juice and down them all at one time.
     Be glad you feel as good as you do. I used to feel guilty because I wasn't as bad as some of the folks who write here. Now I simply thank God on a daily basis. I believe He has a reason for keeping me going so long.
     I need to relate to everyone my experience with chronic pain. I went to my familly practice doctor. She referred me to a pain clinic which I went to last week. At the first visit I was prescribed oxycodone 5 mg with APAP 325 mg and was to take one tablet every 6 to 8 hours as needed. When my pharmacist gave the medication he told me it was potent. I questioned taking one in the morning because I had to work. His response was he wasn't sure I'd be able to navigate to work. I've only taken one of the pills.
     Today I was back at the pain clinic. I am being given a heavy-duty brace to provide support when I'm active. In addition (and this is so wonderful) I am now wearing a TENS Unit. I can't beging to tell you how it changed the pain in my back. I'm to wear it as needed. I'm told it will be covered by Medicare as well as the brace. Jon, any thoughts about the oxycodone? Can the tablets be cut in half? I read on line that there is a casing that might show up in one's stool but these are not capsules. I'm really a coward to take any of these other than when I'm going to be at home all day. I'd appreciate comments. Karen K. karenk@machlink.com
 
Jon's note: I believe strongly in time-release pills for opiates given for chronic pain. Avinza is time-released morphine and oxycontin is time-released oxycontin. There is no up or down with these meds, just a mild, steady release of pain relief. My doctor doesn't even prescribe "pain pills" like Vicodin and Percocet. He goes straight to time-releaese versions and they have worked very, very well for me. I have rheumatoid arthiritis, bursitis, peripheral neuropathy, fibromyalga, and other nasty painful conditions so I have a lot of experience (unfortunately). Your description of cardiomyopathy causing CHF is correct.


Marty C, February 8, 2007 - Hello friends, I'm in my fifth year with dilated cardiomyopathy and LBBB. I had a very scary pericardial effusion when they placed my ICD (2-lead) almost 3 years ago, but once I stabilized from that I seemed to be doing okay with an EF of 35 to 40%.
     The past few weeks I've felt pretty lethargic and my wife is telling me I look a little puffy. I've never been on a diuretic other, but she tells me my ankles and feet are at a plus-one rating for edema. She's a registered nurse and even though she is a labor and delivery nurse, she does assess swelling often enough that it got my attention.
     I scheduled an appointment with my cardiologist and he had me give blood for a pro-BNP test yesterday. The last 10 of these tests have come back showing a reading of less than 50. Today I found out that yesterday's is 73.8. Now I know that's still a very good number but it's higher than before. Is this a low enough increase that it's statistically irrelevant, or should I be concerned? Maybe I should be pressing for a diuretic I can use on an as-needed basis? Thanks for your time, and my donation is already sent for this month. I'll be trying to send more real soon. Marty. padre45@aol.com
 
Jon's note: First, be sure you are on a strict low sodium diet and getting enough exercise. If so, and you still swell, weigh every morning in your skin. Any 24-hour increase of 2 lbs or more indicates a need for a diuretic, along with blood testing to see if you should also take prescription slow-release potassium.


Teresa M, February 8, 2007 - Hello again, I posted on 08-02-2005, wondering if my cardiomyopathy could be "gone" as the doc said. The initial report said a diagnosis of idiopathic nonischemic cardiomyopathy was "ominous." Since Coreg worked well, I stopped questioning and just went on with my life. I switched providers after spending a lot of money with the PPO; now I'm in an HMO and out of debt, praise God.
     My new doc questioned the diagnosis and suggested testing it by going off Coreg. Exactly four months after stopping Coreg, I had another near syncopal episode. I've been referred to cardiology again. My appointment is tomorrow at 1:30 PST. Please pray for me. I just want some answers! Can the Coreg just mask the problem? Does it matter? I'm afraid of SCD. Blessings to you all. tmoraga@dhs.ca.gov
 
Jon's note: In my opinion, your doctor is a dangerous idiot. Stopping Coreg cold is dangerous and the worst possible way to check for anything - a typical case of a doctor trying to manage CHF who doesn't even understand its basics. Switch doctors immediately!


Sue L, February 8, 2007 - Hi all, I am a new heart patient. I had a diagnosis in 2005 of ductal carcinoma in situ (breast cancer) Stage zero - nothing involved except the small lump they surgically removed. Now a doctor wants me to take Evista to prevent recurrence. I was just wondering if anyone else has experience with this drug and what the side effects for the heart muscle may be? Thanks a lot in advance for any reply. Sue L. selogsdon@hotmail.com


Hope M's February 8 reply to Nancy S' February 6, 2007 - Hi, I looked on the Medtronic web site and they say ICD batteries are not replaced, but the entire ICD is replaced. The following information is from: www.medtronic.com/servlet/ContentServer?pagename=Medtronic/Website/StageArticle&ConditionName=Tachyarrhythmia&Stage=Management&Article=tachy_art_paicdrep.
     All defibrillators need to be replaced because the battery is sealed inside the defibrillator's metal case. The exact replacement time depends upon the type of defibrillator, the medical reason for a defibrillator, life style issues and other factors. Most defibrillators last many years. During regular in-clinic or remote follow-up visits, your doctor can check the status of the battery and determine when the defibrillator needs to be replaced. The surgery for replacing a defibrillator is typically easier and quicker than the initial implant. A new incision is usually made over the old one and the old defibrillator is removed. The functioning of each lead is checked to determine if any lead needs to be replaced. If the leads are functioning well, the existing leads will be connected to the new defibrillator. Depending upon your medical condition, you may return home the same day the replacement is done, or you may need to stay overnight in the hospital. hlmcneil@suddenlink.net


Linda K's February 8 reply to Sharon L's February 6, 2007 - Hi Sharon, I am in total agreement with you about limiting unnecessary chemical intake. Don't get me wrong. I am a child of my times and am truly grateful for all the wonderful concoctions science has given us, and with my health I definitely believe in better living through chemistry but the truth is that every form of cancer has been on the rise, and people coming to the USA from countries where the cancer rate is lower quickly come to match us as they adopt our life styles. Science must ask what the difference is between there and here, or between then and now. In our air, water, food, toiletries, cleaners, etc,.., we are all exposed on a regular basis to things that did not exist before the 20th century. Research tells us that these things can be harmful at certain doses but are safe at another dose. However, they are studying one substance at a time. If you expose yourself to all of them together for 20, 30, or 40 years, are they still safe?
     I used to have nasty acne and dandruff. On the advice of a friend, I gave up shampoos with sodium lauryl sulfate (can be very hard to find) and my scalp cleared right up. Then I gave up soap and laundry detergent with sulfates, and my skin cleared up. It is a known skin irritant, so why is it in 95% of all soaps and detergents? Because it's cheap, makes nice suds, and most people don't have a huge reaction to it. That doesn't mean that it won't be bad for you.
     There are those who make think you are an alarmist for avoiding Splenda, but I say why expose yourself to more manufactured chemicals than you need to? Have you tried stevia as a sweetener? lindakasunick@adelphia.net
 
Jon's note: Just to make a somewhat obvious point - one major difference in Americans past and present is being overweight and being sedentary, which immigrants usually become quickly, 2 factors that hugely contribute to illness in general. On the other hand, I had to quit using "Scrubbing Bubbles" shower cleaner because it worsened my rash (lichen planus).


Patrick S, February 8, 2007 - Hi all, I am looking for a cardiologist in New York City. Any recommendations? I would love to find someone really proactive - with the testing, (CT scans, echos, etc.) and with the medicine and herbs knowledge. Thanks! Patrick. patmichael@gmail.com


Sharon S, February 9, 2007 - Hello, I have a regular pacemaker right now and am scheduled for a BiV pacer/ICD in 2 weeks. Has anyone here who has one been able to reduce any of your meds? Any improvement in your quality of life? Any weight loss or gain? Thanks for any input! ericandmegansgrandma@yahoo.com


Sharon S, February 12, 2007 - Hi all, Also, how about exercise? Any improvement in your ability to walk or exercise? ericandmegansgrandma@yahoo.com


Debra S' February 12 reply to Sharon S' February 9, 2007 - Hi Sharon, I was able to go off a diuretic. I still take the miserable pills like Coreg and tiksyon. A little more strength, lots of weight loss, no matter how much I eat. Medically there is an improvement in my quality of life. I am no longer told I need a heart transplant. Good luck. Debra. r_steinberg@sbcglobal.net


Tom S' February 12 reply to Sharon S' February 9, 2007 - Hi Sharon, I've had my BiV pacer/ICD since April of 2006 and other than some very minor discomfort and a little bit of swelling in the device area, I would hardly know it was there. Next week I have an appointment for a device checkup and reset of the pacing. Other than that my device and I coexist very nicely, thank you.
     No, I haven't been zapped. I've come close to it according to the tech who checked me about a month ago, but no zaps. I guess about the best advice I can give is try to forget it is even there and listen to the doctor and the technician will tell you about it and what to expect and experience. bigheart@muchomail.com


Georgia W, February 12, 2007 - Hey you guys, I was really frightened yesterday. I went to visit a friend, just a few blocks away, but of course I drove. On the way home I started having chest pain, bad chest pain. I pulled over and took a nitro tab. Then I sat and did deep breathing for awhile. It still hurt and depending on which way I moved, it hurt even worse. I got home and took another nitro, then the burning chest started. After about 30 minutes, it finally settled down but I thought I was going to meet my Maker for sure.
     I insist on dying at home at this level. The heart doctors have claimed they cannot do anything for me - no devices, no more surgeries, no transplant. So I do not intend to go there and have them torture me for no reason. Phew. I feel better. Peace and love, Georgia. wgrg417@aol.com


Lowell P, February 12, 2007 - Hi everyone, This CHF puts us on such an emotional roller coaster. Some days I feel almost normal and the next it's an effort to walk to the mailbox. Some nights I sleep so well and the next it's insomnia. Has anyone figured out how to even out some of these bumps in our lives? How effective is exercise with weights? Appreciate any comments. Lowell. Lpepper3m@aol.com


Bob M, February 12, 2007 - Hello, I have dervelped sarcoidosis. Does anyone know how this will or might affect my CHF? I need to take large doses of prednisone. I do not know how I can tolerate that med as I have been unable to tolerate it before. Thank you. hawkdog86@aol.com


Mary C, February 12, 2007 - Hi all, I've been living the good life by eating off my diet. School food stinks, if you know what I mean. I went to see my CHF specialist yesterday. He said I am one salty meal away from hospitalization if I don't take care of myself. I have wandered away. I need to pack a napsack when I go to school. He said just, "Chicken, fish and vegetables." I deserved the scolding. Back to the drawing board. MHCARRS@aol.com


Cheryl S, February 12, 2007 - Hi, I had my two-lead pacer/ICD put in a week ago. I did fine, except the next day the chest x-ray demonstrated the ventricular lead that goes through the valve had pulled back from the heart wall. Though last week it was pacing, this week I went back and it was not. This means they want to do the whole thing over again this week. The answers I got for why this occurred were as enlightening as, "this just happens sometimes, especially in a-fib patients."
     I'm on the surgery schedule but feeling that I don't have enough information to proceed. I'm going to call the patient advocate's office Monday, but I would also like to do some independent research on problems associated with pacemaker/ICD lead placement. If anyone has experience with this or knows of a good site on ICDs, let me know. cas22can@yahoo.com
 
Jon's note: Have you tried implantable.com? See chfpatients.com/links.htm#forums.


Roger H, February 12, 2007 - Hi all, I was very suprised Friday night at 8 in the evening when my cardiologist called and asked me if I wanted to be involved in a clinical trial for chelation therapy. He said if this shows good results, which he thinks it will, because he has had patients with great results this will in the end lead to Medicare paying for the chelation. The only bad thing is the sodium in the chelation and we will have to see how I deal with that.
     I have also been telling all my friends and neighbors that in June, I will be 65 and be a retired person! I will then try really hard to take care of myself and enjoy life a little! rkharmony@highstream.net


Anne D, February 12, 2007 - Hello, I just wanted to thank everyone who responded both here and by e-mail to my question about having no insurance. Your responses have been very helpful. I've found a program though a drug company that will provide me with my Coreg at no cost! I had no idea such a program existed. I just need to have someone from my doctor's office be my "advocate" and register me, and that is being done already. That alone is a huge help. I also have an appointment at the Social Security office tomorrow though I know that will probably not lead to any help, I'm still going to follow up. Anyway, I just wanted to say thanks! Anne. anne@freedombuilders.org


Tony M, February 12, 2007 - Hi, I had posted for the last year about how hard it was to get into the routine of using a CPAP machine due to ill fitting masks that I would find in my lap instead of on my face every morning. Then I read about nasal pillows 5 months ago on this site and since then I sleep with a CPAP every night giving me the maximum effect.
     I found out the hard way I had sleep apnea last year due to my lungs failing on a heart test for a stem cell study. Last year my oxygen level at room temp was 88%, which is terrible but now it's 99% and my ejection fraction rose from 35% to 60% and my overall heart function is much better. I couldnt believe it! I thought I would feel somewhat better but never thought my ejection fraction would go up that much.
     I have had cardiomypathy since 2001. Six months after finding out about my heart disease, I flipped a heavy all terrain vehicle over on top of me and it took 8 surgeries total to sort of fix me. The worst is my entire neck is fused with a long rod which all my neck vertabrates are screwed into the rod, making my neck not very mobile at all. I now have less pain in my upper body and I can start working out some to and build up my stamina. Tony M. Ynotmyrick@yahoo.com


Nancy S' February 12 reply to Hope's February 8, 2007 - Hi Hope, Thank you for the information. My original CHF doctor told me that they would only replace the battery. I'm sorry that I passed that along. I'm on my third doctor now since I go to the University Hospital and the doctors tend to go on to other places. It is one of the best there is, though. I did quite a bit of reading while I was looking at the address you posted. Again, thank you.
     To Sharon S, I have had my implanted device about 5 years and I don't take my Lasix as much as I used to. I only take it when I need it along with the potassium. As for the other drugs, I started out with the lowest dose of Coreg and now take 12.5mg but that is good. My blood pressure was too low to increase before and has since risen. All other drugs I still take the same dosage. My quality of life is much improved and I still work full time.
     I was in class 3 and was hospitalized a couple of times the first year after I was diagnosed and haven't been at all since getting the pacemaker. My weight stays about the same - way too high - but that's my fault, not the condition. Good luck to you with your surgery and hopefully you will do very well too. Nancy. ns1@alltel.net


Lauren A's February 12 reply to Teresa M's February 8, 2007 - Hi Teresa, I'm with Jon: You definitely need a new doctor! I too went off of medicine with a cardiologist's blessing about 4 years ago and it was a big mistake. I ended up being a new patient at a heart failure clinic. It is dangerous and can be life threatening to go off meds. You need to be evaluated by a heart failure specialist. My story has had a fortunate ending as I was placed back on my medicine including Coreg and I am doing well. However I go to the clinic every 3 to 6 months for follow up.
     This is a hard diagnosis to adjust to and live with, especially when you are young. I was diagnosed at age 39 and that was almost 9 years ago. I truly feel blessed to be alive and I know the medicine helps tremendously. Please make sure you find a doctor that specializes in heart failure. Best of luck! Lauren. larnsperger@hotmail.com


John S, February 14, 2007 - Hi, I have an EF of 28%. I have suffered through multiple moments of arrhythmias. My EKG looks bad. It shows a span of more than 160 on the QRS and bad ST. I have LBBB but I have not had any bouts with passing out. I had an ICD implanted on 12/0420/06. It was put in by a cardiologist about mid-chest on the left side. On 01/03/2007 the ventricular lead dislodged and the device moved towards my underarm. I recieved 2 unneeded shocks in 15 minutes. The two leads were next to each other. On 01/05/2007 the cardiologist went in and repositioned the leads. That's two surgeries now.
     On 02/02/2007 I went to see an electrophysiologist who checked the device and said the atrial lead was not working. He looked over my medical records and had an x-ray done. He said I did not need the ICD by itself; rather I needed a pacemaker/ICD (CRT-D device). Due to the damage on the left side of my chest from the last two surgeries I had to have the CRT-D put in on my right side. He put it in just under the collarbone higher up than the ICD had been put in.
     I feel 100% better now and my energy is back and my arrhythmias seem to have gone away. I praise the doctor who put in my CRT-D and the change it is making in my life. As for the cardiologist who did the ICD, I dont know. Some folks say I should sue him for what he did as far as placement and both leads coming out as well as the fact that I should have had a CRT-D put in the first time.
     Tell me your thoughts on this and I hope y'all appreciate my little horror story. cuffandstuff@charter.net


Sue H, February 14, 2007 - Hello, My husband developed atrial Fib after his heart surgery 2-1/2 years ago. It acted up for about a year but he hasn't had a bout of it in about 15 months. He's on Coumadin. Has anyone ever had this happen and were eventually taken off the Coumadin? My husband's hoping to go off the blood thinner. Did everything go okay after that if you did? Thank you. Keep up the great work, Jon. Sue H. mae@canada.com


Sharon S, February 14, 2007 - Hi and thank you all for your input about your BiV pacemakers. I am really looking forward to this as I would love to feel a little more energy and stamina. I am scheduled for 02/23/2007 and I'll let you know how it goes.
     Thank you Jon for this site. I have a tendency to whine to family about being 52 and having CHF. Then I get on here and see all the young people trying to deal with this. ericandmegansgrandma@yahoo.com


Kelly O, February 14, 2007 - Hi All, I'm new to this site and find it to be the best one that I've found for information, advice and experiences! I have many questions too. I am a 43 year old woman, usually quite healthy and was hospitalized with CHF in July 2006, possibly caused by a virus as I have no choleserol or "plumbing" problems. My EF was 35% and I suffered serious a-fib. Medication lowered my heart rate (sometimes as low as 35 bpm) and a few months later was diagnosed with sick sinus syndrom/bradycardia. A doctor implanted a dual chamber pacemaker. An echo was done as a follow-up and in December in 2006 I was back up to an EF of 55% and feeling better.
     Another follow-up left me with bad news: My arrhythmias were increasing, not decreasing, and my cardiologist has now referred me to an electrophysiologist to look into an RF ablation procedure. From what I've read, they are pretty successful. However they are not usually done prior to pacemaker implant.
     Did my cardiologist do this backwards or do I have something else to be concerned about? The specialist told my cardiologist to take me off amiodarone (Cordarone) as it was obviously not working. My diagnosis is "tachycardia-induced cardiomyopathy," yet the arrhythmia has tripled. I'm enduring episodes that total about 3 hours per day, not once a month or twice a month like I read on other sites. I have daily episodes which really wipe me out.
     Has anyone had an experience like this? What might I to expect next? Any help would be greatly appreciated as I am totally consumed with it! Thanks. kellyorchard2004@yahoo.com


Nancy S, February 14, 2007 - Hi, On Friday the 16th I am going to have an cath done because I had an abnormal stress test. I am aged 54 and had 4-way bypass a little more than 9 years ago. I am so worried about this. If evertyhing turns out okay I have agreed to let then amputate my left foot. My doctor says my photos show a black area in my heart meaning there might not be enough blood going to that area. It sounds like I have a blockage there and I figure if I do, then it will be surgery again. Last time was a nightmare.
     Has anyone gone through something like this? What am I expecting? Should I be worried and stressful? I too am on Cymbalta for depression. I love this product. I don't cry as much and feel at ease using it. I've been diabetic over 48 years and use the pump.
     Help me please. I am scared and don't know what I am about to go through. iluvcavies@alltel.net


Jon, February 14, 2007 - Hi everybody, Posts may continue to be non-daily. I spent 2 hours in an MRI machine today and get more time in it Monday. I am also catching up on all manual-labor types of work around home in case my rheumatiod arthritis gets worse in my hands and prevents me from doing it in the future. This includes tree trimming (one tree left) and building basement storage and one false wall, then I'm caught up. Thanks for your patience.
     We're now only 650 dollars US from being able to purchase all the tools we need for the site should my fingers give out. Thanks for the donations! Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 Jon C.

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