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

Lisa B's 3-1 reply to William B's 2-27     Coreg and myasthenia gravis interaction
 
Scott B's 3-1 reply to William B's 2-27     Coreg experience
 
Karen K 3-1     correction to clonidine post
 
Heide A 3-1     seeking others who understand what it's like
 
Larry T's 3-1 reply to David E's 2-27     numbers, living with heart failure
 
Scott B's 3-1 reply to David E's 2-27     numbers, living with heart failure
 
Scott B's 3-1 reply to Carrie I's 2-27     weakness and exercise with heart failure
 
James N 3-1     seek experiences on getting insurance in Ohio
 
Jon 3-2     well, here we go again with something new
 
Ben B's 3-2 reply to Linda's 2-25     thank you
 
Debra A's 3-2 reply to Carrie I's 2-27     pain and weakness after exercising
 
Pam J 3-2     prognosis tools
 
Pat Y's 3-1 reply to David E's 2-27     numbers, living with heart failure
 
Karen K's 3-2 reply to James' 3-1     getting Ohio insurance with heart failure
 
Jack D's 3-2 reply to Scott B's 3-1     you may live a long time with CHF
 
Tom S' 3-2 reply to Scott B's 3-1     you may live a long time with CHF
 
David E 3-2     heart failure prognosis worries are better, thanks
 
Lisa Z's 3-6 reply to David E's 3-2     question for Guidant BiV patients
 
Karen K 3-6     16 years since my heart failure diagnosis
 
Mary C 3-6     heart failure specialist is critical & more
 
Lori A 3-6     questions about QRS length
 
Ken N's 3-6 reply to David E's 2-27     living with CHF, Who's Who listing, ICD zaps
 
Giorg's 3-8 reply to Pam J's 3-2     online tool for longevity with heart failure
 
Mary M 3-8     glad to find you!
 
Maryann H 3-8     can we donate through United Way?
 
Sue K 3-8     has anyone else dealt with this?
 
Linda K 3-8     anyone had acupuncture? with blood thinners?
 
Deborah J 3-8     seek CHF doctor in northern Virginia
 
Patrick H's 3-10 reply to James N's 3-1     HIPAA versus COBRA
 
Jon 3-12     sorry, dumb but necessary
 
Sharon S 3-12     weird sensations after pacemaker implant
 
Mary C 3-12     torsemide worked
 
Mary C's 3-12 reply to Sue K's 3-8     torsemide, liver function, doctors & more
 
Carol H 3-12     does this sound genetic, stress? Seek surgical experiences
 
David W's 3-12 reply to Giorg's 3-8     coping with CHF, gout drug allopurinol
 
Wendy O's 3-12 reply to Linda K's 3-8     acupuncture experiences for back pain
 
Stephanie H's 3-12 reply to Deborah J's 3-8     my experiences with specific doctors
 
Melanie H 3-12     seek chat room for heart failure
 
Sue H 3-12     seek CHF doc in Norfolk/Virginia Beach area
 
Roger H 3-12     chelation trial experience so far
 
Emil S 3-14     seek stem cell trial experiences in heart failure
 
Jenny M 3-14     seek experiences with Primacor infusions for heart failure
 
Margaret D 3-14     seek experiences with CHF Vo2max numbers
 
Carol H's 3-14 reply to Sue H's 3-12     Virginia Beach cardiologists
 
Marty C 3-14     ask prayers for my son Jordan
 
Scott B's 3-14 reply to Carol H's 3-12     familial (geneticially enhanced possibility of) cardiomyopathy
 
Linda K's 3-14 reply to Sharon S' 3-12     a different pacer setting may do it
 
Giorg 3-14     gout drug dose & longevity and more
 
Kathy H 3-14     seek CHF doc in Sarasota/Bradenton area
 
Mary C's 3-14 reply to Melanie H's 3-12     seek chat room for heart failure
 
David E 3-14     seek help with test results
 
Jon's 3-14 reply to David E's 3-14     seek help with test results
 


Lisa B's March 1 reply to William B's February 27, 2007 - Hi William, I had a bad experience with Coreg. After some testing, it was found that I had barely detectable myasthenia gravis. A couple of months after I got to the target dose of 25mg BID of Coreg, my muscle weakness got pretty bad, I fatigued really easily, and my shortness of breath was worse. I had an EF of say 55% but my Vo2max was 14, presumably due to muscle weakness in the breathing muscles.
     I found on the Internet that Coreg can aggravate myasthenia gravis so we stopped it altogether. Just a side note: I went to 2 neurologists and neither of them knew about the Coreg/Myasthenia interaction. I'm a big advocate of methodically hunting down information on the Internet. packupletsflyaway@hotmail.com
 
Jon's note: Knowledge matters. Keep reading!


Scott B's March 1 reply to William B's February 27, 2007 - Hi William, Jon's reply is so perfect, it really needs no additional comment ("Welcome to the Coreg Club"). I had exactly the same problem. I tried to tolerate 50mg twice daily (the European top dose) because I weigh a svelt 265lbs (all muscle - ha ha). I just could not do it. However, 25mg daily will be extremely beneficial to you if you can tolerate it.
     Personally, the first few weeks were the worst for me - you feel worse than living with the CHF symptoms - however, it gets better and better as long as you can stay the course. Several months later, you will still notice a gradual improvement. If you forget to take your Coreg for a dose and then feel great, do not get sucked into not taking it or cutting back. Think of this as working hard to get to a certain level. I hope you can hang in there. Scott B. scott.brown@sunlife.ca


Karen K, March, 2007 - Well, oops! I am sorry, it appears I misread the info on Clonodine. I saw the word "hypotensive" and interpreted it to mean for those with low blood pressure. It's still a bit confusing as to all the things this medication is prescribed for. Karen. karenk@machlink.com


Heidi A, March 1, 2007 - Hi, I am newly diagnosed with heart failure although I have had heart problems my whole life. I am looking for someone to talk to who has CHF not of their own doing and is still young. I found this week Jon's CHF web site and hoping that you could help me. I am looking for support from others who could understand. I am 32 years old and was just diagnosed with heart failure about 3 weeks ago, I am just learning what the treatments and life style restrictions are and am feeling kind of overwhelmed and frustrated.
     Here is my story, shortened. I was born with a congential heart defect called atrial septal defect where I had a large hole between the atrias. This was surgically corrected with a Dacron patch when I was 3 years old and I was told I was cured. When I was 15, I had bouts of atrial tachycardia and flutter that caused my heart to beat 250 to 300 times per minute. I had emergency catheter ablation and was sent on my way again, then it happened again in 2004 and I had another ablation. This time all electrical communication between the atrais and ventricles was knocked out, so I became pacemaker-dependent; I got my first pacemaker as an emergency procedure and it took awhile to get used to that physically and psychologically.
     I had a Medtronic dual chamber pacer with anti-tachicardia pacing capabilities. I have been having the usual routine pacemaker checkups but was starting to have more exercise intolerance, SOB, fatigue, and more recently a cough so the yearly echo was done and it showed EF of 39% down from 50% less than a year ago, pulmonary hypertension, tricuspid regurgitation, and left ventricular dysynchrony.
     it was determined that I needed to start on Vasotec and get the new biventricular pacemaker immediately. I had the biventricular pacer implanted on Valentine's day. I had my post-op on Monday and got the low salt, fluid restriction diet. I was told that while I am doing great the pacer might not fix the CHF problem. Up until then I thought that getting the new pacer would fix everything and I could go on my merry way with only twice-yearly pacemaker checks, tweaking, with a new pacer implant every 7 to 10 years. I was told to follow all the CHF guidelines (diet, exercise, etc.) but have not been told exactly what they are.
     I am doing research and can figure out what they are but don't know how to apply them to me. I already don't drink enough, only about 1 to 1-1/2 quarts of fluid a day including watery foods like jello. Do I need to restrict my fluid intake more that? Same with salt - I intake a lower amount than average so do I need to restrict below my usual? I know that these are not questions that you can answer - it is just an example of how I feel like I have been left hanging with no real answers to my situation.
     I also wanted to do a formal cardiac rehab program so that I could be forced to get better exercise tolerance and could feel safe while exercising, but my cardiologist doesn't think it is necessary right now. I will be having other unrelated surgery in April so I guess that I will wait until after I am recovered to really push that issue.
     I love my cardiologist. He is an EP department head at University of Chicago hospitals so he isn't some bozo from a small local hospital but reality is setting in and I am feeling depressed and frustrated. None of my heart problems are caused by my lack of care for my body. I am not overweight, do not have high blood pressure, do not eat lots of fried foods, and am not diabetic. It makes me mad to see others abuse their body and get away with it but I take care of my body and it still betrays me. I would love to talk to someone. Could any of you talk or e-mail me? Heidi. heidiashman@sprintmail.com
 
Jon's note: Feel free to contact me at chfpatients.com/contact.htm and be sure to follow all the links in your post above. Read my health problems at chfpatients.com/biosgate.htm and chfpatients.com/bios/jonsplace2.htm and you'll know that I understand.


Larry T's March 1 reply to David E's February 27, 2007 - Hi David, First of all, don't dwell on numbers. Seven years ago I had a severe heart attack and had a quadruple bypass. My family was told at that time that I probably wold not live a year. My EF has been at 15% since. I can't do a lot but I do what I can. I am fortunate in that I have a very close and caring family. I saw my cardiolgist last week and he just shook his head, smiled and said you just keep on going, then he asked me what I enjoy about life. Get a good doctor who will listen to you and stay positive. I wake up every morning and say thank you Lord for another day and get on with my life. God bless and good luck. Larry. carolthornton@comcast.net


Scott B's March 1 reply to David E's February 27, 2007 - Hi David, Who knows how long we are going to live? However, you can forget about the 5-year quote from the old medical books. Many of the people on this web site exceed 5 years and we are still doing okay. Of course, this is anecdotal evidence. The 5-year thing came from a time before and beta-blockers, along with good management of fluid levels (using diuretics).
     I haven't heard a good number. My cardiologist once quoted "twice as long" and I took this to mean a range of one to 5 years was now 2 to 10 years, however, I believe these now standard drug therapies for CHF are too new (10 years) to draw a meaningful scientific conclusion. Scott Brown. scott.brown@sunlife.ca
 
Jon's note: I am on year 13 and I began with an EF of 13%.


Scott B's March 1 reply to Carrie I's February 27, 2007 - Hi Carrie, I'm not sure if this is the same thing or not but I exercise vigorously several times a week (I love to play badminton). Sometimes I get a game or so in but will have an overwhelming need for sugar. I feel weak, maybe sickly and sometimes it is so bad, I cannot even finish the game. Without fail, if I have something with sugar in it like Gatorade or chocolate or sugar candies, the feeling goes away and does not come back.
     I have never had a problem with blood sugar that I know of and I have a full meal before I play. I think the meds regimen has something to do with it. I am thinking it is sometime related to the Coreg. I'm not sure if this is similar but it is worth trying. Are you short of breath when you exercise? The weakness might suggest something with poor heart function, but I would expect some of the other typical symptoms. I hope you get to the bottom of this. Thanks, Scott Brown. scott.brown@sunlife.ca


James N, March 1, 2007 - Hi, Does anyone in Ohio using HIPAA to continue their health insurance? My COBRA expires soon and I am researching every viable option for maintaining benefits. I'm curious to know what company, monthly cost, and what was covered. I'm aware coverage is nothing close to group plans, but options are rather limited at this point. noctaire@infobin.org
 
Jon's note: Hopefully, someone will know of options but I don't believe HIPPA is involved in actual coverage.


Jon, March 2, 2007 - Hi everyone, Well, now it's official. I can add rheumatoid arthritis to my list of health problems. Today I started methotrexate along with folic acid (to reduce methotrexate side effects). Here's hoping I don't get too many of the really nasty potential side effects! Jon.


Ben B's March 2 reply to Linda's February 25, 2007 - Hi Linda, I thank Elaine for reminding me to thank you for the effort you and Jon put into this site. I know you both credit Jesus, but it is appropriate to get a little earthly recognition once in awhile. As I've said many times, I credit this site for a big part of keeping me alive and sane these past 9 years of DCM/CHF. Jon always reminds us that you are the backbone. Congratulations on your long marriage and your wonderful daughter! bdbrinkman@juno.com


Debra A's March 2 reply to Carrie I's February 27, 2007 - Hi Carrie, I have that feeling too. Actually, there are two feelings that always worry me. The one I think you're referring too is called fatigue hangover. It just means you pushed a little too hard and now you have to pay the piper - slow down and see your doc to make sure that is all it is.
     The other feeling I get is one of something just being wrong. So far it has not lead me astray even though I have gone to the emergency room and been told I was okay with just "mechanical pain" that was not responding to the oxycodone but after having the experts read the x-rays, they sent notice to my doc saying, "Oh oh, she does have fluid in the pericardium!" Anyway, trust yourself even more than your doctors. If you feel bad get help or change your routine! dma98003@yahoo.com


Pam J, March 2, 2007 - Hi Jon, I've read (and thank you for) your entry on the average life span with CHF and the flaws in the Framingham study. If you've seen the Seattle Heart Failure model I would appreciate your thoughts on it. You can find it at http://depts.washington.edu/shfm/. The model calculates a projected survival at baseline and after interventions for patients with heart failure. I printed it and took it to my doctor. He plugged in my numbers and went over the results with me and discussed various interventions that could help. Thank you for all your work on this site. When I started looking for info on CHF, your site was the most helpful. Best wishes and God bless. Pam J. pjones@shreve.net
 
Jon's note: My totally honest reply is that I don't believe in their model, nor in the various models that "help" CHFers decide which meds are best for them. I have refused offers to place such "tools" on our site at no cost. They can do more harm than good in my opinion. They are all based on statistical analyses of previous trials, which dictates assumptions that do not apply to all CHFers (as their own explanation admits). A single wrong assumption or statistical methodology inaccuracy in a model skews results.


Pat Y's March 2 reply to David E's February 27, 2007 - Hi David, I also only found the average five year life span estimate when I was diagnosed with IDCM/CHF. Thanks to this site I gained hope. At the present time I am still living independently. By the way, I was hospitalized on 12/25/1994 and like Jon I am in my 13th year.
     Stick to this web site and it can guide you to lots of current information. Information from the mid-1990s and later give us much better information. The book, Success With Heart Failure by Dr. Marc Silver has some good information and is easy to read. My copy was printed in 1998. It may have been updated since this time. PTYoumans@aol.com
 
Jon's note: Marc is on the committee that writes the official heart failure treatment guidelines and is one on-the-ball CHF doc!


Karen K's March 2 reply to James' March 1, 2007 - Hi James, I agree with Jon; I don't believe HIPPA has anything to do with insurance. HIPPA was enacted to supposedly protect the confidentiality of medical information. This can make it a bit tough when your spouse talks with your doctor and is told, "Sorry, remember HIPPA."
     I recently had my COBRA end. I did the research about 6 months prior. I am now covered by Blue Cross/Blue Shield of Iowa, which wonderfully covers almost everything not covered by Medicare (I'm on disability). Another company I would have given a lot of thought to was the insurance provided through AARP, but you must be 65 to enroll. I still have a few months before that wonderful milestone. I wish you luck! Karen. karenk@machlink.com


Jack D's March 2 reply to Scott B's March 1, 2007 - Hey! This must be the old guys' club. Jon's 13, I'm 10. I'm older, uglier and they haven't given me any prizes. Too bad this isn't AA - at least they get little pins like the Scouts. I've been around here since pretty much the beginning too. Believe me, it's gotten a lot better. Way back in the day before Jon got a spell checker it was kinda like trying to understand hillbilles talking to each other. maddjak@hotmail.com
 
Jon's note: Jack really is an old timer - here before there was actually a message board at all - and he's right! The reason the first 2 years of posts aren't online is the number of HTML and CSS mistakes of mine that I'd have to correct.


Tom S' March 2 reply to Scott B's March 1, 2007 - Hi Scott and David, To echo Jon's longevity I am on year 12 and started with an EF of 15%, bounced back up to about 35% then went back down to "immeasureable" with a 5 to 10% guesstimate via heart cath 3 years ago. I believe I am somewhere around 15 to 20% and had a Biv pacer/ICD implanted in the spring of 2006. bigheart@bellsouth.net


David E, March 2, 2007 - Thank you to both Scott B and Jon, and others who replied. Since finding this site and exploring it, my tension about 5 years has eased. Thank you Jon for this blessing for people with heart problems. skippi4@hotmail.com


Lisa Z's March 6 reply to David E's March 2, 2007 - Hello all, I am the daughter of a 77 year old CHF patient. He was first diagnosed with DCM when he was 66. My hubby has nicknamed him the Timex: Says he takes a lickin' and keeps on tickin'! Dad started with an EF of about 30% and has declined to 10% over the years. On President's Day, he got his "new engine" as he refers to it, which is his BiV/ICD. It has been nothing but improvement so far. He feels a little more energetic each day and we are hoping that will just continue!
     So after 11 years, he is still going too! We live near Pittsburgh and are blessed to have opportunities here for great healthcare and wonderful technology. We could not have been more pleased with Allegheny General Hospital. So hang in there. There may be lots of ups and downs over the years but with lots of research and this amazing web site that I have learned so much from, we are still going!
     One question to anyone with a BiV pacemaker from Guidant: Did you get the Latitude Communicator as part of the implant? We are still working through all the instructions, and I would love to get some info from someone that has one. Thanks! zeigler@zbzoom.net


Karen K, March 6, 2007 - Hi all, Since it appears there is a "contest" of sorts going on as to who has had their diagnosis the longest, I can't help but respond. I was diagnosed 16 years ago this past January and I too, received the same info regarding life span. I was told within one year I would start going downhill and within 5 require a heart transplant. I've gone downhill due to old age. ;-) but I feel God must have something for me to do on this fine earth. I am very well compensated and if EFs hold true, have not really changed all that much given the plus and/or minus variance when the test is given. So there, gotcha guys! Karen K. karenk@machlink.com


Mary C, March 6, 2007 - Hi everyone, Remember how Jon is always saying go to a CHF specialist? Well my CHF specialist has lowered my blood pressure and has me on the appropriate CHF meds. Now he sent me to a cardiologist in town to fill the gaps for me if I get decompensated or other.
     Well, the new local cardiologist saw all my records and pretty much told me that I was healthy and didn't need a cardiologist in my life. He also told me I should probably get off the ACE inhibitor and the Lasix, except that they did lower my blood pressure. So he pretty much discharged me. Clearly this very nice man doesn't understand DHF. He said that since I didn't have SHF he wasn't worried about me and since there is "no" treatment for DHF like surgery, etc,..., not to worry about it. I was stunned.
     At least I have someone who listened to me about my arteries being clear and if I do end up in the emergency room he won't do an angioplasty, he will just treat my symptoms with Dr. Rame, my DHF specialist on the phone.
     Be careful out there. By the way Jon, my weight went up again 4 pounds in one day and I am having SOB, so my PCP finally gave in today and has given me torsemide. Thanks Jon, you're the greatest and so is this life-saving site.
     Could you imagine if I waited until life threatening symptoms before I started the right meds? If I take them now I can extend my life and quality of life. Love from Mary to Jon's big heart - not a pun. MHCARRS@aol.com


Lori A, March 6, 2007 - Hi all, I had an EKG today and I asked the tech what my QRS length was. I had heard that that was a number I should know. She said it's 137. When the cardiologist came in, I asked her about my EKG results and she said that it was abnormal, but normal for me. I guess I'm a class 3. My last EF was 40 to 45%. Can anyone here tell me what this QRS number means? Jon, thank you for running this site. It's truly comforting to hear from other people dealing with similar issues. You are definitely in my thoughts. simpleefine@hotmail.com
 
Jon's note: Follow the link in your post for info on that QRS interval (length) number. You should have a special kind of echo to find out if a BiV pacemaker would help you.


Ken N's March 6 reply to David E's February 27, 2007 - Hi David, You may live a long time. Add me to the list of CHFers still alive after 10 years. Note that numbers are not absolute. Current meds are so much more effective, as are implanted devices, and stem cell research is now ongoing for regenerating heart strength. The quality of your doctor and chosen treatment is also a prime factor, also true for EF numbers. My EF has been 15% for the past 10 years and I can't go jogging but I am far from being an invalid - EF and relationship to daily living varies widely by individual.
     I need to post this weekend about devices and zapping. I have much experience with it and hope to start a discussion. I haven't posted here in years. I've been busy living my life, ya know. See who I am? Go to Who's Who. I'm in there. Jon, my Who's Who listing is so out of date. Can I e-mail you an update for it?
     Let me say something for anyone who is still new to CHF and has not yet adjusted to how it has changed your life - I've been busy living my life ya know. Love ya, Ken. kennoetzel@aol.com
 
Jon's note: More posts later. Ken, please do send me an update. I'd love to see more of them updated.


Giorg's March 8 reply to Pam J's March 2, 2007 - Hi Pam, I played a bit with that tool and I am quite unsatisfied because of the methodology that Jon explained and because lots of variables are missing. However, it might give a quick overview on some factors that statistically impact on CHFers' life so I began to check und uncheck.
     Some results were expected (no betablockers means shorter life), but others not. For example, who knows why taking allopurinol should shorten a lot one's life? That medication (that I take for uricemy) maybe is a sign that kidneys are failing because of heart failure and if kidneys begin to fail that is so bad, worse then having a low EF for example? giorgclunei@hotmail.com
 
Jon's note: While allopurinol is not recommended to actually treat heart failure, it does have beneficial effects as proven in trials per the link in your post and the 2 articles above that one. Strange that it should be said bad for CHF.


Mary M, March 8, 2007 - Hi all, I am so glad to find so many people with CHF! I mean, I'm not glad you have it but that you share many of my problems and frustrations. I also take meds for chronic depression as well as Coreg and digitek. I got an implanted ICD/pacemaker about 5 months ago and it has really helped. My EF went from 22 to 34% and I feel better, although I get tired mid-afternoons and the good old Coreg shuts down my short-term memory a lot so I repeat questions - what was the topic? Oh yeah, CHF! Anyway, thanks for being here. Mary. mabyssinian@gilanet.com


Maryann H, March 8, 2007 - Hi Jon, Do you know if there is a way for money to be donated to this site through United Way? If there is, could you please tell me how to proceed. My thanks for all you and your wife do. mahall1958@hotmail.com
 
Jon's note: Yes. I assume you just write in our corporate name in the United Way withholding form - CHFpatients.com, Inc. People do donate this way. We receive the donations quarterly and we love it!


Sue K, March 8, 2007 - Hi, My mother has CHF. She currently has fluid buildup in her stomach and lungs. I think the doctors are not aggressively fighting this because of her age (78) and because she has memory loss. She also has some kidney function loss due to many years of diabetes. Is there anyone out there who has dealt with the same complication and come out of it?
     The whole mess started when her primary care doctor placed her on a medication for her aggressive behavior for memory loss and it lowered her blood pressure and threw everything off. She was hospitalized twice recently and medications were reduced or removed. My frustration is that the doctors are giving up on her due to her age and memory loss. Any suggestions on what to do now? suek1158@msn.com


Linda K, March 8, 2007 - Hello everybody, I'm loving all these posts from people who have lived with CHF for a long time. It gives me hope when I'm having a down day - or week. I can tell I'm doing more these days because my back is killing me! Has anybody out there ever tried acupuncture? I've heard pros and cons but I figure I've spent one heck of a lot of money over the years on conventional medicine and doctors and physical therapy that did me no good at all, so why not?
     Has anyone had any problems with acupuncture and blood thinners? The woman that was recommended to me says that she has many clients on blood thinners and has never had a problem, but I notice that some experts say no and some say "caution." I figure at the very least I need to make sure my level is stable. She has also worked with people with pacemakers and does not do electrical stimulation with them. lindakasunick@adelphia.net


Deborah J, March 8, 2007 - Hello, I am trying to locate a good CHF specialist in the Northern Virginia area. debkayj@hotmail.com


Patrick H's March 10 reply to James N's March 1, 2007 - Hi James, The Health Insurance Portability and Accountability Act of 1996 (HIPAA) covers many things related to health insurance, but continuation coverage following the loss of eligibility is not one of them. That falls under the Consolidated Omnibus Budget Reconciliation Act (COBRA).
     HIPAA will, however, restrict any pre-existing conditions exclusions and limitations and provide credit for prior credible coverage to actually reduce or even eliminate pre-existing conditions limitations. It is not unusual for individuals to think that HIPAA will provide additional health coverage. This, I think, emanates from the fact that the bill does prohibit discrimination based on health status. phaygood@ewtn.com


Jon, March 12, 2007 - Hi all, Sorry for the delay. I sort of crippled myself up from soreness when I restarted the weights. Jon.


Sharon S, March 12, 2007 - Hi, I got my BiV on Friday 02/23. The doctor said he had a hard time finding the vein and almost gave up. In recovery they found my left lung was collapsing, so I got to stay in the hospital for 5 days with a chest tube. The doctor said later that it was probably from all the probing that he did looking for the vein.
     I have a weird thing going on though. If I talk more than about 5 sentences or if I lean to the left and take a deep breath, my left side starts thumping. Anyone touching me can feel it and in fact you can see my clothes move. After reading one experience having your pacer inserted and them pacing your diaphragm, I'm concerned that this thing is pacing my lung! I didn't notice this in the hospital since I was in bed the whole time.
     I've been home a week now. I called the doctor after a few days and they just said that it was probably from all my body went through and will go away. I go see the cardiologist tomorrow 3/08 and will see what happens there. ericandmegansgrandma@yahoo.com


Mary C, March 12, 2007 - Well Jon, With torsemide, I got the weight off in like 2 days and not 7, like usual. I feel better already. I reminded my PCP to run a potassium level in 2 weeks and he wrote me a lab slip. The poor PCP is trying to fill the gaps since my local cardiologist discharged me. mhcarrs@aol.com


Mary C's March 12 reply to Sue K's March 8, 2007 - Hi Sue, I struggle with this. My doctor put me on torsemide (a diuretic) and potassium supplement. Now I am better, with no more SOB and no more stomach and abdomen edema. Read The Manual on diuretics; Jon has a whole section on this type of edema. Does she have SHF or DHF? You must find the right cardiologist - see my earlier post. A CHF specialist is imperitive.
     Of course the stomach edema could be liver acites, which could mean her liver is being affected by all the drugs or is retaining fluid itself. The liver and kidneys break down drugs and sometimes they can be overtaxed. By the way, try to get a geriatic PCP. They love old people and really believe in life extension. Also, I worked with seniors along time, they don't break down drugs like us younger ones. The drugs themselves and how she breaks them down could cause the combative behavior and memory loss. That's just a last minute thought since you didn't mention dementia or other organic brain disorder. mhcarrs@aol.com


Carol H, March 12, 2007 - Hi, I'm new to this. I was diagnosed with CHF a few weeks ago and have read everything on the Internet I can find about it. I am 60 and was raised as a farm girl living on almost all organic foods and led a healthy life. My heart was the last thing I thought I'd have trouble with.
     The last year I have had some symptoms but assumed they were chronic bronchitis (coughing) and more tiredness than I expected. I go to my family doctor regularly and when I became extremely short of breath, I thought I had developed asthma. I went back to the doctor and after an x-ray he sent me to the emergency room. My ejection fraction was 12 to 15% so I was hospitalized for a few days.
     Coreg is a miracle drug (I am on 6 new things). I have had it upped once and feel so much better. My daughter (age 34) was extremely ill last year and the stress of her illness was severe for me; we almost lost her. She is doing better now but has been diagnosed with cardiomyopathy which they discovered during her hospitalization. Does anyone think it could be a genetic predisposition or is it probably just a fluke? My father had heart problems (bypass surgery and a heart attack, but these were not his cause of death.
     I wonder how much stress played a role for us. I want to get a vaccine for pneumonia and shingles, but will check with my cardiologist first. I know I can improve a lot, but have trouble exercising as I have severe arthritis in both knees and am unable to walk much. I have to ask my cardiologist when I'm able to have surgery. Does anyone know of any complications having surgery?
     I have an echo next month so see if I have really improved. Thanks for the place to vent myself. hollidaycj@cox.net


David W's March 12 reply to Giorg's March 8, 2007 - Hi, I have to take allopurinol for gout did not know it was bad for my chf, but not really any choice because gout is so painful and debilitating. For newbies I am an old-timer now too going on 7 years with CHF. I have lived far longer than my first heart doc ever dreamed I would live. He thought I would be lucky to live a year. He did tell me to stick with Coreg and that in the long run it would help and he was right. I think Coreg helped a lot. My EF was 14% at diagnosis and went up to 40% for about five minutes and now stays around 30%.
     I had a dual-chamber pacemaker put in last June and I am not really sure if it helps much or not. The first month with the pacemaker I felt so good and strong but not since then. I don't think I am any worse though who knows. Take your meds and do what the docs say and you can get better in time. If you have a doc who does not listen to you find another one. There are lots of docs out there - some good, some not so good. We need and deserve the best docs we can find. wilsond537@aol.com
 
Jon's note: I'm not sure where the idea that allopurinol is bad for CHF came from. See the 3 trials starting at chfpatients.com/meds.htm#allopurinol for details on why I so strongly question this.


Wendy O's March 12 reply to Linda K's March 8, 2007 - Hi Linda K, I had acupuncture for my back pain and it worked great. It did more to relieve the pain than anything else did for me. I had tried everything short of surgery but acupuncture gave the best relief for me. I found more relief with Eastern acupuncture than with Western acupuncture so check which type is provided. Eastern involves more needles over greater areas of the body but none of the needles caused any type of bruising or bleeding. It also involved some heating of the needles which helped bring some pain relief. I went for treatments for about 2 months and since then have had very little back pain even when doing gardening or lifting. I hope you find some relief. Wendy. woddlef@shaw.ca


Stephanie H's March 12 reply to Deborah J's March 8, 2007 - Hi Deborah, My regular cardiologist is Dr. Young Park and I absolutely love him. He practices in Reston and Leesburg. He is not a CHF specialist but I feel like I get great care with him. He spends loads of time with me at our appointments and always asks questions and expects me to ask him questions.
     Dr. Andrew Keller, who is with the same practice (Cardiac Care Associates), I believe is a CHF specialist and is also associated with the Inova Fairfax Heart and Vascular Institute. I have seen him in association with a study in which I am participating. I liked him very well also. There is also a guy at the Washington Hospital Center that is very good - I can't remember his name, but will look at home and post back here if I find it. However, for me that is a very long way to travel. I hope this helps. howsares@saic.com


Melanie M, March 12, 2007 - Hello, I finally have found a site that is both informing and comforting. Thank you, Jon. I am 49 and was diagnosed with CHF in June, 2006. For other reasons, I had a rough year and the prognosis is only beginning to settle in. Is there a chat site/room where, when feeling very pessimistic, you can chat "real time?" canaan1297@aol.com


Sue H, March 12, 2007 - Hi, My mother was hospitalized with CHF last week and is being cared for by her family doctor. Honestly, this guy seems to be absolute clueless. Can anyone recommend a CHF specialist in the Norfolk/Virginia Beach area please? I am a CHF newbie caregiver and would really appreciate your help. Thanks, Sue. mrsnerd@rocketmail.com


Roger H, March 12, 2007 - Hi, Yesterday was the first of 40 chelation treatments in the trial in which I am participating. I have experience no side effects except increased weight of 6 pounds. I was also given a multivitamin-horse pill and have to take those 6 per day. They took away the regular C, E, and multi-vitamins I was taking. The chelation process took about 3 hours so I can look forward to that every week now for a while. I won't know till the end if I'm getting the full dose or the placabo.
     One of the guys said after this we won't need all the rest of the meds we're taking if it works. We have noticed a book on the cardologists table titled "Reverse Heart Disease Now." On a closer look, my cardologist (Dr James Roberts) along with another one of the same thinking doctors named Dr. Stephen Sinatra coauthored this book. From my experience of going on 6 years now, these are not normal-thinking cardiologists.
     I just started reading the book, but it is very interesting to know where they started: Trying to put everyone in the hospital to trying to keep them out! Jon, your site bests all the rest on the Internet. Thanks to you and the rest for all the help and support! Roger H. rkharmony@highstream.net


Emil S, March 14, 2007 - Hi all, It seems with all the clinical trials dealing with cellular cardiomyoplasty, someone out there has either had the procedure done or knows of someone who has had it done. Can you tell us your results of the procedure, where you had it performed, and the stage of the trial? Actually, can you tell us anything at all about the procedure? despaeth@earthlink.net
 
Jon's note: If replying to stem cell research questions, always tell us if you have ischemic or non-ischemic cardiomyopathy, please.


Jenny M, March 14, 2007 - Hi everyone, I need to know if anyone has had any experience with Primacor infusion? I am going Friday for a right heart cath to see what my numbers are. My doc thinks this is the next move for me. Thanks in advance for any help you can give me.
     Also, thank you Jon, for this site. Jenny. unionjack@rittermail.com


Margaret D, March 14, 2007 - Hi all, I had a Vo2max today and it went well. I was told that I did well, with a result of 22. I am well compensated with an EF right now of 40% but I am a bit confused, as Jon's table puts me, at age 59, with a "poor" result. Is this in relation to the average non-cardiac patient? So this means that my result is excellent for a patient with CHF but not for someone my age? I exercise 5 days per week with at least 45 minutes of cardio training, along with resistance training. Thanks in advance for any thoughts. mdavis10@fuse.net
 
Jon's note: You're not doing badly, but keep training and watch your weight. I came in at a result of 30 last time despite all my health problems. I had to lose almost 30 extra pounds and exercise my tail off to get there, though. Please note I started with a result of 13.5 at diagnosis. Finally, remember that different sources - all supposedly reliable - give very different "normal" Vo2Max numbers, a test which is sometimes confused with a Vo2 test, which gives consistently lower numbers.


Carol H's March 14 reply to Sue H's March 12, 2007 - Hi Sue, I live in Virginia Beach and my daughter and I both go to a huge cardiology group on Old Donation Parkway called Cardiovascular Associates Ltd. They have a good web page with lots of info. They work at Virginia Beach General Hospital and some at Norfolk General Hospital. I would consider them to be (in my opinion) the group to see. Try to get your mom's doctor to refer you. My care has been very appropriate for my diagnosis. Good luck. hollidaycj@cox.net


Marty C, March 14, 2007 - Hi all, Yesterday my youngest son turned 19. Today he left for basic training and I'm a mess. My heart is so heavy but so proud at the same time. He is not the military type but is rather a very sensitive kid. I know how many good people come here, so I ask for your prayers for Jordan. Thanks. Marty. padre45@aol.com


Scott B's March 14 reply to Carol H's March 12, 2007 - Hello Carol, I believe I can say that your daughter has familial dilated cardiomyopathy. When someone develops heart failure without a cause at age 34, it is not normal. The chances are very low for this to happen. Therefore, when you both end up with heart failure at a relatively young age, it is possible you have found the cause. I was 32 when I was diagnosed, and my father was about 47 when he got the diagnosis. There are over 10 inherited genes which are currently known to contribute to DCM.
     Once I was diagnosed, I could think back many years where I could do lots of exercise but I would always feel sleepy instead of the great feeling I was supposed to feel after that kind of workout. As I got older, I drank lots of coffee, which covered up the sleepy symptoms and I coped like that for many years - running 3 miles a day, lifting weights, etc. Once shortness of breath kicked in and didn't go away, I eventually had an echocardiogram and found out for the first time how enlarged my heart was.
     You or your daughter should send me an e-mail if you are interested. One thing I struggled with is whether to take the chance of passing DCM to my children. I have 2 young wonderful daughters but have no idea if they will be impacted. Thanks, Scott B. scott.brown@sunlife.ca
 
Jon's note: Just a note - I got cardiomyopathy at age 35 and it does not run in my family, so be certain to look at all possibilities for the real cause. Some readers have been diagnosed as young as 13 with no family history. Nevertheless, familial CM is not uncommon.


Linda K's March 14 reply to Sharon S' March 12, 2007 - Hi Sharon, That thump you're feeling is nothing to worry about. Because of the proximity of the vagus nerve to your heart, many people experience this. The nerve is picking up the electrical pulses on the left side of the heart in certain positions and it's actually your diagphram that's getting paced.
     I get the same thing. The first time they started my pacer up, I felt like there was a mouse jumping around in my abdomen. They had to fiddle with the settings quite a bit to find one that only did it now and then. I have found that the sensation has reduced with time and all I have to do to stop it when it annoys me is shift my body a little.
     If they haven't already done so, see if they can adjust the pacing to eliminate the problem if it really bothers you. If you didn't feel it when they started it up, maybe there is a setting for you that will get rid of it completely. lindakasunick@adelphia.net


Giorg, March 14, 2007 - Hi, How much allopurinol do you take? I just take 50mg per day. Some of the trials that Jon mentioned seem to indicate that statistically a low dose like 50 g per day might reduce long-term survival, while a strong dose like 300mg per day or so might increase long-term survival in CHF patients; looks like just statistics.
     Maybe in the tool I was playing with, there are the statistic of low dose use but the tool to me seems totally unuseful (encouraging, though). Putting in my data, I should have like many years of average life expectancy in front of me, but actually I am on a heart transplant list and transplant is getting urgent according to my cardiologists and to my symptoms and quality of life, and to the evolution of the disease other relatives of mine had in the past. giorgclunei@hotmail.com


Kathy H, March 14, 2007 - Hi, I am looking for a heart failure doctor in the Sarasota/Bradenton area. Does anyone know of any? Thanks for your help. kathystar2@aol.com


Mary C's March 14 reply to Melanie H's March 12, 2007 - Hi Melanie, There are a lot of chat rooms online. Some are good and some not so good. I prefer this site because it is moderated. The unmoderated sites are where you can let off steam, but also get a lot of misinformation - just punch "CHF chat rooms" into your browser.
     However, be very careful with an unmoderated chat room. Personally, if I had that much need for a support group, I would go to a therapist who moderates caregivers/patients chatting. Maybe your local AHA or hospital social worker could help you. Good luck. mhcarrs@aol.com


David E, March 14, 2007 - Hello, I would like to first thank Lisa Z and Ken N for their responses to my post. I have come to the conclusion that I have the potential to live a long time. Thank you for sharing your stories.
     I recently went to the transplant center at the University of Virginia Medical Center, had some tests done, and met with a transplant doctor. They also made a pacemaker adjustment. The overall result was that I don't need a heart transplant now. They also did not say that it could not be an option in the future. I had a Vo2Max test done, a BNP test done, and a right heart catheterization done.
     I am hoping someone might help me better understand the results of these tests. The doctor gave me some general understanding. The BNP result is listed as 55 H. What exactly does that mean? The doctor said it was good, but my primary care said that the H means high, which is not good. The Vo2Max test had a predicted result of 41.4 and I scored a 15.2. The doctor said that this was very low, so that is why he made the adjustment. They changed the pacemaker mode from DDD to DDDR, and the automode from DDI to DDIR. I vaguely understand what the change is meant to do, but if anyone has an other knowledge, please let me know. The right heart cath said that all my pressures are normal.
     Thanks to everyone and I hope someone can give me more information as to what these results mean. David E. skippi4@hotmail.com


Jon's March 14 reply to David E's March 14, 2007 - Hi David, Very briefly, your BNP results don't mean a thing to me. Both BNP and pro-BNP results are usually given in pg/ml (picograms per milliliter of blood). "H" is meaningless and you should insist on an explanation from the doctor, or the lab.
     Your Vo2max test is barely above that which would qualify you for transplant (14 ml/kg/min or milliliters of gas per kilogram of body weight per minute during the test). Losing excess body weight and exercise will significantly raise this test result. You really need to work on this since low Vo2max is a fairly reliable indicator of life span in CHFers.
     The normal right heart cath results are a very good sign. These mean pressures in your lungs, pulmonary artery, and right heart chambers (which are less strong than left heart chambers) are good so you aren't likely to develop pulmonary hypertension, a very dangerous condition.
     The pacemaker terms are defined in the MedSpeak glossary at chfpatients.com/glossary.htm#DDD and after that entry. I hope it helps some, 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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