The paperwork never ends The Archives
December 1-15, 2006 Archive Index CHFpatients.com

Jon 12-2     posts, tip on Coreg
 
Mary C's 12-2 reply to Jacky B's 11-29     getting second opinions and the right doctor for you
 
Jon 12-4     sleeping
 
Jack D's 12-4 reply to Bev T's 11-27     Byetta, Amaryl, and more
 
Ann D's 12-4 reply to Kelley M's 11-27     low sodium diet experience
 
David W's 12-4 reply to Jennifer M's 11-29     coping financially with heart failure
 
Scott B's 12-4 reply to Jennifer M's 11-29     coping with heart failure
 
Sandy N's 12-4 reply to Jennifer M's 11-29     coping with heart failure
 
Joseph A 12-4     having my leads and device adjusted worked great
 
Jon R 12-4     chef trying to get low sodium going - it's tough!
 
Debra S' 12-4 reply to Jon's 12-2     once-a-day Coreg timing
 
Jack D 12-4     update on Byetta, diet
 
Lowell P 12-4     seek experiences with furosemide (Lasix)
 
Marcia H 12-4     free used CPAP machines web site
 
Cheryl S 12-4     should I wait or go to an emergency room?
 
Maryann H 12-5     NSAIDs and cardiomyopathy without heart failure
 
Mary C 12-5     arrhythmias and TIAs experience
 
Georgia W 12-5     my PCP got me better than heart docs did
 
Lori A's 12-5 reply to Cheryl S' 12-4     fatty enlarged liver - anyone else?
 
Edward M 12-5     seek experiences with oxygen for CHF
 
Jack D's 12-5 reply to Jon's 12-4     Byetta and time release meds
 
Linda K's 12-5 reply to Lowell P's 12-4     retaining fluid/Lasix experience
 
Tom S' 12-5 reply to Lowell P's 12-4     retaining fluid/Lasix experience
 
Jennifer M 12-5     thank you all, this can drive you nuts
 
Jennifer M's 12-5 reply to David W's 12-4     what is the difference between SSD and SSDI?
 
Mary C's 12-7 reply to Jon's 12-5     getting the right doctor and more
 
Jon's 12-7 reply to Mary C's 12-7     getting the right doctor and more
 
Lori A's 12-7 reply to Jon's 12-5     will check with my doctors about liver disease
 
Tom S' 12-7 reply to Jon's 12-5     urinal containers
 
Karen I 12-7     end-stage heart failure
 
Jon's 12-7 reply to Karen I's 12-7     end-stage heart failure & more
 
David W's 12-7 reply to Jennifer M's 12-5     SSI
 
Cindy W's 12-7 reply to Edward M's 12-5     oxygen supplementation
 
Pat H 12-7     defective leads or negligence?
 
Scott B's 12-8 reply to Karen I's 12-7     end-stage heart failure
 
Peter S' 12-8 reply to William J's 11-27     pulmonary hypertension questions
 
Patrick S 12-8     exercise questions
 
Ann L 12-8     how do I cope with constipation
 
Jon 12-13     sorry
 
Tom S' 12-15 reply to Cindy W's 12-7     and to Edward about oxygen supplementation experience
 
Mary C's 12-15 reply to Peters S' 12-8     pulmonary hypertension experience
 
Verna L's 12-15 reply to Peters S' 12-8     pulmonary hypertension experience
 
William J's 12-15 reply to Peters S' 12-8     pulmonary hypertension testing experience
 
Janet R 12-15     seek digoxin toxicity experiences
 
Ann D 12-15     seek stubborn edema experiences
 
Jack S' 12-15 reply to Jon's 12-7     abnormal cortisol should be considered
 
Roger G 12-15     seek opinions on oral chelation
 
Jack D's 12-15 reply to Jon's 12-13     you're a wreck, man
 
Jon's 12-15 reply to Jack D's 12-15     that's true, but,...
 


Jon, December 2, 2006 - Hi everyone, Well, it looks like I'll be catching up on posts tomorrow. I managed to fire up a tremendous case of tendonitis in my fingers and wrists fixing a long section of chain link fence; this makes typing an ordeal but should get better fairly fast.
     Then I've had to deal with lawyers and finance companies due to some real lulus pulled by my Alzheimer's-stricken mom before we got power of attorney and moved her out of her house. The finance company looks to be pulling a fast one to come after me and my wife for my mom's 40,000 dollar debt to them and it's probably gonna be a real fight.
     Finally, I have to get ready for a dinner party related to my wife's career. Luckily, my truck will handle all the ice and snow here without a hitch. I will get caught up on messages and posts, though. By the way, a once-a-day Coreg pill is now available so talk to your pharmacists and doctors about it. Jon.


Mary C's December 2 reply to Jacky B's November 29, 2006 - Hi Jacky, I agree with Jon. Get a second informed decision before any more stuff is done to your body because once it is done, it can't be undone. Jon's site has taught me that doctors won't be my advocate, I need to be my own advocate.
     Read The Archives and see the stuff I have read on stuff done to CHF patients that never should have been done, or that should have been done in a different way. Educate yourself on the two procedures. Read up on the mechanisms before implant. Certainly get someone who has done it a hundred thousand times, and a CHF specialist to boot. It's your body, you only get one.
     I have seen 3 cardiologists in 6 months. I kept looking until I found the right fit. Don't let the doctor make you feel crazy for asking a lot of questions. Don't ask him to send you for a second opinion because he will send you to someone that agrees with him. I know this can be expensive (I am in debt, but happy) but very worth it. mhcarrs@aol.com
 
Jon's note: I just fired a dermatologist and am extremely pleased with my new one - it was a smart move.


Jon, December 4, 2006 - Well guys, I slept 24 hours straight so I'll now start catching up on posts. I don't know what I hate most, heart failure or fibromyalgia. Jon.


Jack D's December 4 reply to Bev T's November 27, 2006 - Hi Bev, Forget the Byetta blogs and diabetes forums. Those places are where the misconception becomes a psychosomatic suggestion that causes most of the nausea complaints. Nausea is the most common side effect but it's not a side effect that happens to everybody. However, with all the hype that's so prolific on those blogs, everybody expects nausea so they get it. I have never had any nausea. Most people experience no nausea but if you expect nausea then you will have it.
     Your doctor wants you to use Byetta to enhance Lipitor? Then he needs to do some serious reading. Lipitor reduces cholesterol. Byetta causes your pancreas to react normally to blood sugar and produce insulin only when it is needed. It has nothing to do with cholesterol.
     Amaryl causes weight gain. Byetta causes weight loss. I had been on a regimen of diuretics for years. Every other day to keep the water down. When I moved up to 10 micrograms of Byetta I started urinating enough that the diuretics are only necessary about once a month. How has it affected my heart? Who knows? Byetta hasn't been out long enough for anybody to know that, except the hypochondriacs who invent most of the side effects.
     Barb has mentioned possible effects but when you understand how Byetta works you can eliminate those problems. One of the things that Byetta does is slow the passage of food through the digestive system. This reduces absorption and reduces the desire for more food. If you take your other meds and inject Byetta then it will slow the absorption of the meds so they don't do you any good. However, if you take your other meds and then delay your Byetta for at least an hour, the meds have been absorbed into your system. maddjak@hotmail.com
 
Jon's note: Hiya Jack, I don't take any of these but our of curiosity, how are time-release meds like Toprol-XL and Avinza and Rx potassium affected?


Ann D's December 4 reply to Kelley M's November 27, 2006 - Hi Kelley, I'm sorry to hear of your situation. There is a lot to learn about CHF. I've only been sick since September so I'm no expert. Long ago I had to give up salt because of an inner ear disturbance. I had been a salt-o-holic. I even had built a little pile of salt to dip my french fries in. I had to give it up. Of course it was bland and unappetizing but by the end of a month I relearned to enjoy low salt foods. I was amazed! So was my family! Food actually does have more complex flavors than I realized. I only have problems now when I can't cook for myself.
     It's vital to give up the salt, somehow. I have heard it said that if salt is in the first 5 ingredients on the label, it is too much. You can go too low, so read up. There are all kinds of info on the web. Stay in touch, my heart goes out to you guys. Ann D. adickeysa@yahoo.com
 
Jon's note: Only 50 to 120mg daily of sodium is needed to maintain a health body, so it is incredibly difficult to go too low.


David W's December 4 reply to Jennifer M's November 29, 2006 - Hi, I am sorry you are having such a hard time. I will pray for you and your significant other. It is hard at first. Luckily I had short- and long-term disability and that kicked in right away. Did you talk to the social worker at the hospital? They can help and he may qualify for SSDI until he can get SSD, which sometimes takes a while. If the docs help you he can get SSD sooner but he won't get any money from it for 6 months at least.
     Do you have a church family to turn to for help? This has happened to many people unfortunately and the government is sometimes slow to help. Family and church are better resources sometimes. Trust in God and look to Him for help. I know it is hard. The docs at my diagnosis in 2000 did not think I would live a year and I am now working part-time and doing pretty well. The meds sometimes take awhile to really help but they can help in time. I had a dual chamber pacemaker put in this year and that has helped me too, it may help him also. wilsond537@aol.com


Scott B's December 4 reply to Jennifer M's November 29, 2006 - Hi Jennifer, Your e-mail is so close to my own experience, I had to read ahead to make sure you were not someone I knew. I was diagnosed at age 31 with CHF. It is extremely common for a regular doctor to get the diagnosis wrong the first time they are presented with the symptoms.
     As a point of correction, I am quite positive you can drop the idiopathic portion of your husband's condition, since it is almost positively familial (likely due to a defective gene). (Jon's note: Even geneticists think that only 1/3 to 2/3 of "idiopathic" heart failure are truly familial so don't be too quick to jump to that conclusion. That is of mid-2006 and is in the literature, but not the usual medical journals - these journals are kind of esoteric and hard to understand). These same researchers believe viruses other than those usually tested may sometimes be responsible and there is some evidence to back that up. My own family has no heart failure history on either side but my biopsy showed no antibodies and my arteries were "as clear as a baby's" on cath. Still, my EF was 13% diagnosis. End of Jon's note)
     First thing, your husband needs to know that his outcome could be better or worse than his father's. The current med regimen seems to be effective in prolonging life. This was not the standard 15 years ago.
     Second thing, your fiance is assuming he will not feel well enough to work again. While this is possible, it is also very possible he will feel well enough to go back to work, even if it means finding a new and less strenuous career (one with benefits would be ideal). I've been working a desk job for the last 5 years but I was not sure at the time of diagnosis if I would do anything again. I am back to playing all of the sports I like.
     With the custody battle, I question whether this is the right time to fight that battle. It might be better to have a healthier dad who is around for awhile than a father who is not around to see his kids grow up. I know that as a parent, this would be very difficult. Gut check - this battle may be better fought in a few years when your fiance is feeling better and has a better fiancial footing.
     You have been dealt a lousy hand, but it is not necessarily the end of the world. The meds take a while to get used to and until you do, you can feel lousy for awhile. Improvement is often gradual and the initial side effects can make you seem sicker than you really are. For the financial perspective, I would suggest a non-profit credit counceling agency (you are not required to pay if you do not have the ability) who can give you your financial options.
     I wish you the best of luck. Scott B. Scott.Brown@sunlife.ca


Sandy N's December 4 reply to Jennifer M's November 29, 2006 - Hi Jennifer, I can relate somewhat to your story. My older brother died at the age of 42 (20 years ago), with what I am now suffering from. He did not have the advantage of the meds and the BiV pacer/ICD that I have. I got sick so fast, with an EF of 12% three years ago, and after seeing a great CHF specialst, I am now enjoying so much more energy and good health!
     Your fiance can have a good healthy life, if he chooses to follow the rules of CHF. Have him read this site and he will learn how to help himself, along with his doctors' advice. He will regain his energy and the aches and pains that come along with CHF seem to leave for longer periods of time and we feel so much better after we learn the proper treatments.
     Don't panic. Allow your fiance to find his own way with this; it's such a personal thing to be this sick. Just stand by him when he needs your support. Good luck to you both! bleuskiiisgrl@yahoo.com


Joseph A, December 4, 2006 - Hi Everyone, I went into the hospital last Monday and they discovered that one of my wires from my ICD to the bottom of my heart had in fact come loose. So the doc screwed it back in and readjusted my ICD and I feel great now. Thanks, Joe. chfeer@earthlink.net


Jon R, December 4, 2006 - Hi all, I am a former chef of 12 years! This low sodium diet is a real kick in the behind for me. I have been able to maintain the required 2000mg a day sodium diet but it is hard. I often find myself being too strict sometimes. I am a little underweight right now, at 5 feet 10 inches tall, and 148 lbs. I am on state assistance currently but I am going on a job interview tomorrow. I am gonna try to get back in the kitchen but just part time. State assistance is just not enough and that's being kind. Wish me luck! jreimer70@yahoo.com


Debra S' December 4 reply to Jon's December 2, 2006 - Hi Jon, I've been told that extended release Coreg will not be available until the first quarter of 2007. My pharmicist just checked. I hope all is well with you and yours. Also, I am told the side effects will be just as bad - lovely. Debra. r_steinberg@sbcglobal.net
 
Jon's note: First quarter 2007 starts in less than 30 days so many people's current prescriptions may run out just as this becomes available. At least it will be one less pill for the old pill box.


Jack D, December 4, 2006 - Hi all, This is a Byetta update. After several months on the stuff my last A1C was 5.7 and a problem that I had been having - microalbumin - is no longer there. There was another problem from the diuretics, ammonia in my blood, being expelled through my lungs. You have no idea how nasty it is to exhale ammonia and of course that means that your kidneys aren't removing it. Well, that problem is gone too.
     Many people don't have a clue what Byetta does or how it works. My own doctor refused to give it to me until I flooded him with pounds of data on it. Then he had me come in to get it prescribed. The best thing about it is the production of insulin only when it is needed.
     The other drugs that flood your system with insulin are bad because excess insulin in your system is just as damaging as high blood sugar. On another note there is a study linking high insulin levels as one of the causes of type two diabetes. It says that the flooding of the system with too much insulin causes insulin resistance. So avoiding the main ingredient of American diets: Sugar/starch, could reduce the incidence of type two diabetes but that requires self-discipline and extra work because you have to avoid all pre-packaged and processed foods. maddjak@hotmail.com


Lowell P, December 4, 2006 - Hi Jon and all, I was told by my doc to cut back on Lasix and I guess I cut back too much. I had several days where my legs were so tired and my body felt like it just couldn't go anymore. It finally occurred to me that I had gained several pounds and I then took furosemide 40mg three days in a row. What a dramatic change in well being! My energy is restored and I feel like walking again. Jon or anyone, is this typical? Thanks, Lowell. Lpepper3m@aol.com


Marcia H, December 4, 2006 - Hi Jon, I noticed an organization called AwakeinAmerica.org and they donate CPAPs and BiPap machines to people without insurance. Please check it out. mhilley@kpunet.net


Cheryl S, December 4, 2006 - Hi all, I've been a lurker here for quite a long time and derived a wealth of wonderful information here. Thank you so much Jon. God has trully given you a mission.
     I developed IDCM in January of 1998 at age 50. By the time it was finally correctly diagnosed, I had been in and out of 2 different hospitals 3 times with 3 pulmonary embolisms, CHF and an EF of 20%. I had a relapse of CHF a year later so they finally put me an appropriate drug regimen and rehab. My EF went up to 35, then 55%. All was well until autumn of 2005 when my BNP started creeping up and my EF started downward.
     This spring, my cardiologist discovered I had a-fib. I went through a brief round of amiodarone (Cordarone) and cardioversion, which failed. Meanwhile, my husband of 34 years succumbed to SCD after a 13 year battle with CAD. Needless to say, the stress has caused a downward spiral for me.
     I just recently got a a heart failure specialist at Cleveland Clinic only to find I have gone from a class one to a a class three with an EF of 18% and a BNP pushing 700. They removed verapamil and added Toprol-XL. I have an unpleasant mix of autoimmune disorders including psoriasis and psoriatic arthritis that made beta-blockers very difficult previously to take. Cleveland started me very slowly and its seems to be working as I am up to 25mg.
     Here is my problem. I'm due to go back to Cleveland (4 hour drive) next Monday to see the CHF specialist plus having a heart rhythm workup with an electrophysiologist. I am one of those patients that experiences severe abdominal edema only before it goes into my lungs. For the past 6 weeks I have been getting sicker with nausea, vomiting, stomach pain, and diarrhea. In spite of eating very little on a low salt and fluid restriction diet, I feel so terrible I have been barely able to function even though my SOB is better from the beta-blocker. Should I jump the gun and go to the ER of a university hospital about 1-1/2 hours from here for a Lasix IV or should I try to tough it out for a week for Cleveland. cas22can@yahoo.com
 
Jon's note: Cheryl, in my opinion, it depends on your weight and your "feeling." If your weight is up 3 or 4 pounds, go to an ER. If your gut feeling is that your heart function may be decreasing, go to an ER. If neither of these apply, consider waiting but call Cleveland Clinic in either case. You should be on torsemide, not Lasix, if your edema is abdominal - it's in the official treatment guidelines. You will do much better on it - I did.


Maryann H, December 5, 2006 - Hi Jon, If you are taking an ACE inhibitor and beta-blocker can you take an NSAID, specifically naprosyn. My son has cardiomyopathy and has never had heart failure. Thanks. mahall1958@hotmail.com
 
Jon's note: You can, but NSAIDs in cardiomyopathy patients (and healthy people too) promote edema, so it could bring on a heart failure episode. See chfpatients.com/heartbytes.htm#nsaids4 If possible, seek other options.


Mary C, December 5, 2006 - Hi, I just had another TIA, my fifth this year. My PCP put me back on Plavix. My third dummy cardiologist took me off it. I found out from my cardiac rehab nurse that even if my blood pressure is low at 90/60, I could still have a stroke or TIA because of my arrhythmias. It turns out that everytime your heart beat is chronically irregular blood pools somewhere for a little while. When blood does that it will clot. That only way to know for sure is to do something called a TEE. mhcarrs@aol.com
 
Jon's note: Anyone with chronic TIAs should be on a blood thinner. Please tell me you've fired the dummy cardiologist. Also, please tell me you are going to see a heart rhythm specialist (electrophysiologist) to get a handle on your arrhythmia.


Georgia W, December 5, 2006 - Hi all, Very good news. My ole EF was 18% and the heart doctors and surgeons threw in the towel. After my current PCP doctor put me on Coreg and furosemide, it is now 30%. I am walking and thinking much better. wgrg417@aol.com


Lori A's December 5 reply to Cheryl S' December 4, 2006 - Hi Cheryl, I'm so sorry you are having trouble, and I hope that your doctors figure out what's going on and get you feeling better quickly! Your comments rang a bell with me though, and I wonder if anyone can provide some input about abdominal edema. I've never heard that term before. (Jon's Note: Read the whole edema page at chfpatients.com/faq/edema.htm. It means edema in the stomach lining. End of Jon's note)
     When I was first diagnosed with IDCM (a gift that came between Christmas and New Year's at the end of December 2002), I had problems eating because I always felt full and had so much SOB. After many months of being on my meds, that went away, most of the time. I was told quite a while ago that I have a very enlarged, fatty liver. They found it while looking for something else in an ultrasound.
     Anyway, my upper abdomen swells up and sticks out like a football, usually at night, fairly frequently. It is very uncomfortable. I've never said anything about it because I just assumed it had something to do with my liver, as I will frequently get pain under my ribs on my right side and I assume that's my liver too. I have mutliple medical problems, and I've just gotten to the point that if I can breathe fairly easily and can move without excruciating pain, I don't bother calling a doctor. They'll just toss another pill at me!
     Does this set of symptoms sound familiar to anyone? simpleefine@hotmail.com
 
Jon's note: While liver swelling can cause these symptoms due to CHF, if you have a fatty liver, you could have a serious condition, usually called "fatty liver disease." I'm not kidding. It can cause cirrhosis, and require liver transplant, so get on this one with your doctors and read, read, read.


Edward M, December 5, 2006 - Hi all, I have not posted any news to this site for many months, but would greatly appreciate any thoughts or experiences from among my fellow CHFers on a matter I'm just now considering. I am 86 years old, have had cardiovascular diseases for most of my adult life, was diagnosed with CHF about two years ago (at which point my cardiologist told me, "You've had this for a number of years. The symptoms are only becoming more apparent as you've reached class 3.")
     I have complete confidence in my cardiologist, my internist, and my pulmonologist, all of whom discuss my situation with one another. Additionally, I've been to a CHF specialist at UCLA who spoke glowingly of my cardiologist and agreed with everything he was doing. Still, I feel miserably ill all the time - there's no let up. I'm nauseous, bloated, fatigued, weak, light-headed, and somewhat comfortable only when sitting still or lying in bed.
     My numbers belie this. My oxygenation figure is in the mid-90s; my EF is 40%. However, I cannot walk without a walking stick or stand for more than a couple of minutes before I have to sit down. It is severely debilitating and truly distressing. I felt that oxygen might help. My three doctors assured me that, as my blood oxygenation was in the 90's, there was no point in having oxygen. I persisted until I had a prescription for oxygen and have just had three days with this supplementation, using a unit called InogenOne. It delivers oxygen only when I breathe in; it is not a constant flow (as there is in a competitive machine called Sequal).
     Have any of you found oxygen to be helpful against CHF symptoms? Have any of you experience with either of the units I've mentioned? Edward M. eminusa@cox.net


Jack D's December 5 reply to Jon's December 4, 2006 - Hi Jon, I don't know any research on this but it's logical that if you take your stuff at least an hour before your first Byetta shot everything is going to be moving in front of the effects of Byetta. It's not like the time release stuff just sits in your stomach for 12 hours. I'd be a lot more worried about anti-cholesterol drugs that block absorption in your gut. maddjak@hotmail.com
 
Jon's note: I hesitate to rely on what seems logical. That's why so many late stage trials fail - what seems logical isn't always how it works. Besides, injections and pills don't absorb the same way or in like time frames. I'm really just curious - I don't take Byetta.


Linda K's December 5 reply to Lowell P's December 4, 2006 - Hi Lowell, The Cleveland Clinic is always looking to cut back on my Lasix, but every time I do that, I get messed up. There is never any evidence of fluid on exam, including when I was coughing traces of blood. I can tell when I'm holding fluid though, and it doesn't take much, because I develop digestive problems and start coughing a lot with a very runny nose.
     I recently learned that there is a connection between rhinitis and heart failure that is often overlooked. Long story short, after much experimentation I have come to the conclusion that I can tell when my body is holding fluid better than any non-invasive test can (and I don't want any more tubes in my neck, thank you very much!) and the docs will just have to trust me on this one. lindakasunick@adelphia.net


Tom S' December 5 reply to Lowell P's December 4, 2006 - Hi Lowell, From time to time I cut back on my furosemide (Lasix) intake when I notice that the output doesn't seem to be quite the volume it should be. I take what I guess would be considered a massive does every day (180 mg twice a day) and I definitely notice whether it has been effective or not.
     One week I even halved my dose for three days and on the fourth I upped it back to normal levels and had a real gusher on my hands. It's a good thing I carry a plastic hospital urinal with me in my vehicle at all times. It sure beats having to find a public restroom when the floodgates try to open at 70 mph.
     There have been previous posts on this very topic and we all pretty much are in agreement that there does seem to be a built cyclical ebb and flow with the use of Lasix. bigheart@muchomail.com
 
Jon's note: Hey Tom, I went to Walgreen's and bought a "sports water bottle" for this. The opening is bigger, and the lid screws on to prevent spills until you can empty it. Just a note.


Jennifer M, December 5, 2006 - Hi all, Thanks for the replies and support, everyone. Jon, your commentary in Scott B's response was intriguing to me. Reason being is that from reading the info the docs gave us on DCM and reading several postings on your site, I was wondering if my fiance's heart condition was not entirely familial but perhaps aggravated by something such as past alcohol use or even a virus. He did have what a doc said was a viral infection in June of 2005. He missed about 4 days of work and even with a doctor's excuse, they fired him. Maybe that kicked it in.
     Also, I was at a neurology office with a client I care for the other day and read an article that anaphylactic shock can cause heart failure. He had a severe case of anaphylactic shock (after eating a banana, of all things, which he is not allergic to - he thinks it was the pesticide stuff used on the produce) at his work and was carried out by ambulance. Ambulance drivers got no pulse on him 4 times and said out of the 100 or so cases they get of this per year, he was in the top worst 3. This was in April of 2004. They ran an EKG on him at the time and said it was normal, however they also ran one in October and said it was normal and told him it was peptic ulcer, a week later it was DCM/CHF. So much for that.
     Doctors are convinced this is familial, but hindsight being 20/20, I have been looking back over the last year or so and thinking, could it have been this? Could it have been that? It's enough to drive you crazy. I still believe it is primarily the genetic link but that maybe one of the other factors may have set it in motion. Zoey2699@yahoo.com
 
Jon's note: Alcohol use and viral infections can both cause DCM and CHF. The real question is, does it matter what caused it? Maybe, maybe not. The real answer is to get the right treatment now that he's got it.


Jennifer M's December 5 reply to David W's December 4, 2006 - Hi David, Can you possibly explain the difference (briefly) between SSD and SSDI? (Jon's Note: Click SSDI link and see page 6 for SSI. End of Jon's Note) With all the paperwork I filled out I am not sure if we applied for both. He got Medical Assistance and did the phone interview for disability. His PCP is great and would certainly help us, I am just not sure which we have/haven't applied for. Arrgghhh! Zoey2699@yahoo.com


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

Mary C's December 7 reply to Jon's December 5, 2006 - Hi Jon, I am having couplets, bigeminy, and trigeminies regularly, as well as PVCs. I think you have a good take on this. I thought Plavix was a blood thinner? I am taking 75mg a day. Yes Jon you are right and I follow your lead and have fired that 3rd dummy cardiologist. Then I went to UCSF. The event monitor is what exposed the problems, along with cardiac rehab. I really needed the encouragement to go further and kick some booty. I am dealing with a another breast mass, so I am working both ends of the candle on this one. You know the feeling. Lots of money going out and not much coming in. mhcarrs@aol.com


Jon's December 7 reply to Mary C's December 7, 2006 - Hi Mary, I know that situation all too well. November was our worst month of the entire year for donations, so I sincerely sympathize. <g> Plavix is a blood thinner - I didn't say what I meant very well. I meant that anyone who took you off it should be kicked in the shins, hard.
     Last time I interviewed doctors, I went through at least 5 before finding my PCP and he has been a marvel. I just fired a dermatologist and found another who is not much for bedside manner, but who is willing to explain everything I want explained and then some, and who really knows what he's doing and doesn't waste time doing it. The main thing is he proves he listens by acting on what I say, not just what he thinks.
     Hang in there. Attitude and will make a huge difference. As for the money, my faith gets me through. After praying together night before last, I spent all yesterday on the phone with financiers and lawyers and it looks like my wife and I may be out from under my mother's debts now. Prayer gets the message to the Guy who gets it done. ;-) Jon.


Lori A's December 7 reply to Jon's December 5, 2006 - Thank you for your note, Jon - even though you've scared me a bit! I guess I'll have to get after my PCP to look further into the fatty liver thing. I just figured that they'd suggest more evaluation if it was needed.
     This site is absolutely great. Thank you so much for taking the time and energy to run it. It is so good to hear about people who are going through similar things. Take care of yourself! simpleefine@hotmail.com
 
Jon's note: You may not have fatty liver disease but if the possibility exists, I figure you have the right to know about it as soon as humanly possible.


Tom S' December 7 reply to Jon's December 5, 2006 - Hey Jon, I've got teens who think anything in a bottle is fair game. I would hate to think what would happen if I left a sport bottle with "fluid" in it laying around my van, rather than my trusty ole privy jug. Hmmmm, come to think of it that may be a way to cure one problem and solve another. bigheart@muchomail.com
 
Jon's note: Yeah, I doubt they'd make that mistake twice! By the way, I hope it's okay but I substituted your "forum" e-mail rather than use the e-mail you sent. Spam bites.


Karen I, December 7, 2006 - Hi all, My dad was diagnosed with CHF a couple of years ago. I take care of him in my home. He is maxed out on his heart meds such as Altace, Coreg, etc. He is only able to handle taking a shower or shaving every couple of weeks. When he does shower he gets nauseated, cold, pale (green) and his blood pressure drops down to 98/48. Afterward, he rests for an hour he is okay.
     Would you consider this end-stage? His advanced heart disease nurse said that soon they may take him off his meds. With that statement, I hear end-stage. He stays in bed 98% of the time and may come out to the living room, but this depletes all his energy. Lately, I have noticed his diastolic blood pressure staying in the 50s on a consistent basis. What is your opinion? Thanks for the help. solotwin@comcast.net


Jon's December 7 reply to Karen I's December 7, 2006 - Hi Karen, There are a lot of things to consider and I'll take them in no particular order. First, is he treated by a heart failure specialist? A general cardiologist or PCP cannot properly care for a CHFer. Next, any time I hear a medical professional say, "It's time to stop meds" my blood boils. In CHF, meds make end-stage disease easier, not harder. Hospice has changed its rules so an end-stage CHFer can now continue taking his heart meds. Why? Because they make him feel better, which is what hospice is all about. For outstanding advice on end-stage palliative care for heart failure, contact Sarah Goodlin at PCheart at http://www.pc-heart.org/. She's incredible and yes, she is a doctor.
     Next, with such a low blood pressure, Toprol-XL would be a much better choice then Coreg. See chfpatients.com/archives/archive2-2006a.htm#Jon2-1 (let it load). Without a full list of his other meds, I can't say much more on that topic, but if he is taking a calcium channel blocker, he probably would feel a whole lot better off it.
     Has he been tested to see if a biventricular pacemaker would work for him? If he qualifies, it could really pull his condition into much better shape. You can read the official treatment guidelines in plain English, including end-stage treatments at chfpatients.com/faq/guidelines_05_short.htm. Compare his treatment to these and note all differences to bring up with his doctor. Also, be sure he is having the proper blood testing on a routine basis to spot imbalances that severely impact heart failure patients. See chfpatients.com/tests/routine_tests.htm.
     Does he have other health problems? If so, what meds does he take for them? Jon.


David W's December 7 reply to Jennifer M's December 5, 2006 - Hi Jennifer, Supplemental Security Income is SSI and is what they usually use to get financial help while applying for Social Security Disability, which takes time. I was asked if I wanted to apply for SSI but I declined since I had private short- and long-term disability from my job. I think you have to repay some SSI if you get approved for SSD, but it is some temporary money coming in which will help. SSI is not a lot of money but it is some money.
     The hospital social worker should be able to help you and there may be additional help from your state's social services programs. I got lucky for a short while and qualified for Medicaid, which helped also. Each state has different help available.
     On the subject of Lasix my current cardiologist thinks taking enough Lasix really helps in the long run. He encourages me to take what I think I need and listen to my body. He thinks I take care of my CHF pretty well and that keeping the fluid low is a very great help to those of us with CHF. I always take 40 mg of furosemide in the morning and evening, and if I feel bloated I take an extra 40 mg and it seems to work for me. wilsond537@aol.com


Cindy W's December 7 reply to Edward M's December 5, 2006 - Hi Edward, My mother is in the same situation as you. She is 85, and can hardly move around at all without becoming short of breath, and feeling faint. Her cardiologist and pulmonologist wouldn't give her oxygen because her oxygen levels are fine. She uses Advair, but we don't seem to think that helps. I believe oxygen would benefit her, but no one will prescribe it. cwermuth@myway.com


Pat H, December 7, 2006 - Hi all, Can leads on a pacer or an ICD break? My sister had 20 shocks in 2 hours a few days ago. The doc said he was sorry and likely had not tightened the leads securely to the device. He was very apologetic. They replaced the device with a dual-chamber device and new leads. It seems to me like the doctor is changing the story from negligence to defective Medtronic leads. Is there any way of getting to the truth? grousepoint@yahoo.com


Scott B's December 8 reply to Karen I's December 7, 2006 - Hi Karen, What you have described with your father is consistent with end-stage heart failure. However, as the definition suggests, this does not describe how long you can live like this. What is your father's age? Is he young enough to consider heart transplant? Does he have an ICD? Have they looked at reducing Coreg to reduce his fatigue?
     I do not understand why someone is suggesting discontinuing meds (other than possibly reducing Coreg dose). Is the point to make this a fatal condition? Most importantly, how is your father's quality of life? Does he still have some activities which bring a smile to his face? Is he comfortable, able to carry on a good conversation with you? Take care, Scott B. scott.brown@sunlife.com


Peter S' December 8 reply to William J's November 27, 2006 - Hi William J, Mary C, and Verna L; All of you have commented on pulmonary arterial hytertension, a subject that I am trying to research ever since a report on a recent chest x-ray stated that I had pulmonary venous hypertension. In my research (limited so far), I have not been able to find any definition or distinction between that variety of pulmonary hypertension and the more usual described "arterial."
     Obviously venous equals vein, but can anyone shed light? Another question: Even if one has a CHF doc in whom one has reasonable confidence, as I do, would it make sense to also consult a pulmonologist? Assuming that like me, the pulmonary hypertension, venous or arterial, is a side effect so to speak of CHF, it is clear that addressing the CHF in the best way possible is the best approach.
     However, re there separate therapies that a pulmonary specialist might address? I will be seeing my cardio doc in January and will bring this all up with him. I am simply trying to gather as much information as I can beforehand so that our conversation can be as productive as possible. PeterSperl@cs.com
 
Jon's note: See the link in your post. "Arterial" is used as a description because the pressure in the pulmonary artery helps define the disease severity. Never forget to check our site index first when researching any heart-related questions.


Patrick S, December 8, 2006 - Hi all, I was diagnosed with dilated cardiomyopathy about 6 months ago. In the first 3 months my EF improved from 10% to 40%. In the past 3 months, it has seemed to leveled at 40%. I am 23, otherwise very healthy. Is it a good idea for me to start exercising? When I have done (in the past 3 months) yoga, running, and lighting weight lifting, I feel great. Is this limiting or helping my heart function improve? Has anyone had any experience with improvement from cardio activity or is best to rest as much as possible? Any information is much appreciated. Thank you! patmichael@gmail.com
 
Jon's note: Again, really, I'm not criticizing, but always check our site index on all heart failure questions - our site is more vast than most people ever realize - it's almost all here. I do flexibility and weight training 3 days out of every 4. I consider this second in importance only to my meds and my attitude.


Ann L, December 8, 2006 - Hi all, I found a receipe for constipation on one of my two medical groups. It involved raisons, figs, dates, senna tea and it works. Alas, I lost it. Does someone have such a thing? I believe it was once circulated on the acor site. Help. annlau@davtv.com
 
Jon's note: Senna laxatives and diet changes (mainly in amount of daily fiber eaten) are the easiest and best tolerated. I have this problem and those changes took care of it.


Jon, December 13, 2006 - Hi all, Sorry for the delay. My left hand and right hip gave at the same time Saturday and I fell down a flight of stairs, a long flight. I'll be okay but I took some damage and typing is difficult. This is the first day I've even been online since then. I have to see an attorney on an unrelated matter this morning and my doctor this afternoon but hope to get in some posts this evening. Jon.


Tom S' December 15 reply to Cindy W's December 7, 2006 - Hi Cindy and Edward M, When I was originally put on supplemental oxygen - over two years ago - my oxygen saturations were between 78 moving around, and 88 at rest. That was the requirement at the time for both my medical doctor and the Veterans' Administration. When I went back to the VA to certify whethere I needed to continue supplemtal oxygen after a year, my sats were in the 94 range and dipped to between 88 and 92 walking up and down a hallway. My sats (oxygen saturation level based on 100%) hover in the 92% range when I check them periodically, but the biggest indicator I have is that I suffer severe leg pains when my sats are low. I also develop a raging case of tinitis (ringing in ears) and usually develop a headache unless I got back on the oxygen.
     I assume I do need supplemental oxygen and perhaps it could be a matter of finding a sympathetic doctor to give you a script for it. Frankly I would rather live without my oxygen tube tether but it does provide relief. I also use it at night rather than using a CPAP machine which I don't think I could ever get used to. bigheart@muchomail.com


Mary C's December 15 reply to Peter S' December 8, 2006 - Hi Peter, It's nice to met you. Pulmonary hypertension is well explained in Jon's site. It has to do with fluid build up. It builds up in the lungs, legs, hands, abdomen and so on; not really edema as much as the heart working really hard to pump but the fluid build up is keeping the heart from getting blood everywhere the body needs it.
     So what happens is the heart has to work harder and harder and your heart wears out faster without good treatment. It is a different and more difficult form of hypertension that does not respond to regular hypertension treatments well. That is why you need a CHF specialist who understands the fluid dynamics of this disease. The right treatments will extend your life expectancy, comfort and so on. It is really important to have a doctor who can separate PH from COPD because both diseases resemble each other. The pressure is built up in the arteries of the lungs. The good thing about this disease is that under good care by a CHF doc you can live with it better. I have. Through diet change, medications, exercise, proper rest and not being afraid. Fear will kill you quicker than any disease. God bless. mhcarrs@aol.com
 
Jon's note: Mary makes some good points here.


Verna L's December 15 reply to Peter S' December 8, 2006 - Hi Peter, I am not sure about the differences in the types of Pulmonary Hypertension, but I do know that not all pulmonary doctors and cardiologists understand how to treat it. Many know nothing about it, and if you have that disease in any of its various forms you should see a PH specialist - which could be a pulmonary doctor or cardiologist who treats PH patients.
     I personally see a cardiologist and pulmonary doctor at St. Paul Heart and Lung Center in Dallas UT Southwestern Medical Center. This is a heart failure and pulmonary hypertension specialty clinic: That is all they treat there. If the doctor does not understand the disease, you will not get treated properly, just as with heart failure. Good luck with this.
     You might check a site called PHCentral as well as the info on PH at this site, which has a wonderful area for PH. tabsgranny@yahoo.com


William J's December 15 reply to Peter S' December 8, 2006 - Hi Peter, An echocardiogram analysis as read by a technician stated that I had severe Pulmonary Arterial Hypertension (PH) with a reading of 96 (14 to 25 is the norm). That type of analysis with that high a reading would mean that my time on this earth was very limited. PH is a very rare pulmonary disease that can be brought on by heart failure or by other situations. There are few cases a year and women have a greater propensity to this disease than men.
     I met with my cardiologist, in whom I have great faith, and he indicated to me that based on my general condition it seems as though the PH analysis was in error. I had an x-ray taken that indicated that I did not have PH but an echocardiogram remains a better basis for analysis. I insisted on having my echocardiogram analyzed by the head of that department. It came back that the the echo analysis was in error and I did not have PH, for which there is no cure.
     In your case what comes to mind is - who did the analysis of your x-ray? Insist on an echocardiogram to make sure that you do or do not have this disease. If the results come back positive, do see a pulmonary specialist who has some experience in this field. Budjoy4@aol.com
 
Jon's note: Always get your echos read by your own cardiologist. My own CHF doc always has another CHF doc read them as well to make sure he's not missing anything. Techs are not doctors and don't know anything about your history or current symptoms, meds, or other conditions!


Janet R, December 15, 2006 - Hello, Does anyone know anything about digoxin toxicity? My father passed away on 11/20/2006. He had CHF, but we did not believe he was anywhere close to dying. The day before he died he was admited to the hospital with severe diarrhea and toxic levels of digoxin (Lanoxin). His BNP on 11/09/2006 was 187. On 11/19/2006 it was 2850. On 11/12/2006 his EF was 65%. I am inclined to believe the digoxin toxicity played a huge role in his death. I am just wondering if anyone here knows or has experienced anything with digoxin toxicity. Thank you. derichards@charter.net


Ann D, December 15, 2006 - Hello all, I'm having trouble getting rid of exessive water. I'm on 40 mg Lasix and potassium. I strictly follow the low salt diet, probably on average 1500 mg or less per day. I've just started Coreg and am up to 19 mg per day but I take no other meds yet. My doctorr thinks I have restrictive (stiff) heart problems, but the next cath with biopsy will shed more light on this.
     Anyway, I'm slowly gaining weight. I'm carrying it around my middle. My neck veins are begining to bulge again. I'm not eating enough for this to be real weight gain. First, I tried 8 full glasses of water per day. I was nauseated over so much water and still didn't lose weight. The nurse practioner said cut back on water to 6 glasses or so per day. There was no improvement or weight loss. My weight is still slowly creeping up. I should weigh 128, instead weigh 135.
     Any other suggestions? adickeysa@yahoo.com
 
Jon's note: According to the official treatment guidelines, my own experience, and the experiences of other readers, you should be changed from Lasix to torsemide immediately. It is especially recommended for patients with stomach edema and those who don't respond well to Lasix with low sodium diet - that's you. I take torsemide with excellent success.


Jack S' December 15 reply to Jon's December 7, 2006 - Hi, I wonder if a cortisol deficiency might be her father's problem. Certainly, a blood pressure of 98/47 should not be the villain in causing his symptoms. I can feel good or terrible with that, or higher, blood pressure. Physical or mental activity will usually bring on my problems. I started having lightheaded problems after an orchiectomy 02/2004 which were greatly magnified when CHF, with an EF of 30% followed pneumonia 09/2005. I will pose question to my cardiologist at my next appointment. An endrocrinologist might be the next step. I had a 90 year old friend much improved with cortisol levels in blood back to normal. jspringston@carolina.rr.com
 
Jon's note: It's certainly something to consider and seriously. However, a diastolic pressure (the second blood pressure number) too low usually is bad news in CHFers. See http://info.chfpatients.com/Blood_pressure-Diastolic_too_low_may_be_harmful.txt.


Roger G, December 15, 2006 - Hi all, I seek any comments about angioprim oral chelation to clean arteries. I had a diagnostic cath done last week which confirmed blockage in my LAD at 100% and IM at 90%. My cardilogist is recommending bypass surgery. raj.g@rogers.com
 
Jon's note: With that percentage of blockage in those coronary arteries you may not have time for oral therapies to work. Your cardiologist may be right.


Jack D's December 15 reply to Jon's December 13, 2006 - Hey Jon, You may not be dead yet but it sure ain't from trying! maddjak@hotmail.com


Jon's December 15 reply to Jack D's December 15, 2006 - Hey Jack, Yeah, This one really makes me mad, though. If my rheumatologist had shot that right hip on my last visit, when I wanted it, this might not have happened. I've also been very insistent he do something about the tendonitis in my left hand and he's hesitated. That's gonna stop. He still thinks I have another serious underlying problem but we haven't identified it yet. I can't open wrappers on anything anymore - my wife has to do it for me. I also have enormous trouble turning pages in books.
     One note: I think weightlifting saved my life this time. I've been working my neck and traps very hard for years now and have tripled my muscle mass there. Judging from where my worst soreness is from my fall, I think I might have broken my neck without all that extra muscle support. Thank you Lord, for keeping me on the weights even when I desperately wanted to stop. Jon.


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