The paperwork never ends The Archives
November, 2008 Archive Index CHFpatients.com
Jon's 11-6 reply to Kate W's 11-16     stopping a beta-blocker
 
William J's 11-18 reply to Tony M's 11-14     please share your stem cell trial experience with us
 
Christine S 11-19     my daughter won't go see her doctor
 
Peter S' 11-20 reply to Terry H's 11-14     generic Coreg
 
Jennifer M 11-21     I am very confused about this whole situation
 
Barbara R 11-26     seek information about BNP blood test
 
Lori K 11-26     does this sound like worsening heart failure?
 

Jon's November 6 reply to Kate W's November 16, 2007 - Hi Kate, At a daily dose of three to 6 mg twice a day, it may not hurt you to stop taking the beta-blocker. Very generally speaking, a dose of 12.5mg twice a day is the low end of the effective dose range for Coreg. Some people genuinely cannot tolerate beta-blockers, while it takes many others a long time to get used to them. One of the things you need to beware of is an increased heart rate if you stop taking a beta-blocker. If your heart rate increases after stopping the drug, you need to see your doctor immediately.
     The other obvious suggestion is to get yourself a new doctor as soon as possible. If you brought this up to him several times before and he continues to say, "I don't know" that means that he is not making any effort to find out - and that makes him the wrong doctor for anyone with heart failure. Jon.


Karen K's November 5 reply to Richard A's November 30, 2007 - Hello, Just thought I'd add my 2 cents regarding changing from Coreg to its generic, carvedilol. I'm on my second month of the generic. I don't know who manufactures it. My guess is the pharmacy would tell me if I asked. When I mentioned the generic to my doctor, the only stipulation made was that I not take the extended-release carvedilol. I have not noticed any real difference since I went generic. Karen. karenk@machlink.com


Eileen H, November 5, 2007 - Hello everyone, What is the "gated portion" of an MIBI? My echoes indicate an EF of 10 to 15%, but the "gated portion" of my MIBI suggested an EF of 55%. cast.net2danes4boo@comcast.net


Jon's November 5 reply to Eileen H's November 5, 2007 - Hello Eileen, The MIBI test is a stress test, and the MIBI stands for "2-methoxy isobutyl isonitrile," which is a chemical used to stress the heart. A "gated" test indicates a type of test called a MUGA, but with the chemical injected to give the same result as if you had exercised without actually exercising. You can read more about this test at www.CHFpatients.com/tests/muga.htm.
     The movie camera usually takes pictures of your heart at rest first, and then the chemical is injected to simulate exercise, after which more pictures are taken. You don't say whether your EF was measured at rest or during the exercise portion of the test. The EF should rise during exercise or when stressed by the chemical. If done at rest, this test is usually very accurate at establishing EF. Jon.


Janet W's October 30 reply to Sherrell G's November 5, 2007 - Hi Jan, I too had CHF, DCM, and an ICD for over 7 years before having my heart transplant 5 years ago. I would be glad to share my experience with you. Just send me a note. sherrellgay@att.net


Betsy R's November 8 reply to Betsy W's October 19, 2007 - Hi, I'm another Betsy (Betsy R) and my birthday is the day you posted your question (October 18). I've just been diagnosed with CHF today. I was previously diagnosed with type 2 diabetes (insulin resistance also), severe obstructive sleep apnea, GERD, kidney stones, chronic sinusitis, osteoarthritis, high blood pressure and cholesterol, complete hysterectomy (told me before surgery that it was ovarian cysts and-or endometriosis but after surgery that it was uterine tumors). I have constant nausea too.
     My health changes hit me in my early 40 s too, with sudden weight gain without diet or exercise change (most gain in abdomen). People kept asking when my baby was due! I have been trying to find out what was causing my sudden weight gain and abdominal swelling for 10 years. Doctors just kept telling me to lose weight (although I am bony everywhere else) and get better control of my diabetes. Finally, my chiropractor told me I might be lactose intolerant and cutting out milk did help some with the amdominal swelling. By the way, almond milk is the best tasting milk substitute.
     Last week my ankles and feet suddenly swelled up and I got shortness of breath that was much worse when lying down. Those two symptoms in combination with diabetes were what got the doctor to do tests for CHF. She has also suggested that part of my problem may be food allergies. I had already stopped drinking milk because it bloated me, but she said to stop cheese also and reduce my salt intake.
     Are you being treated for the sleep apnea? When they put me on a CPAP at night, it helped some with day time fatigue and shortness of breath. It also helped some with headaches and concentration, especially short-term memory problems. bar@brws.com


Eileen H's November 8 reply to Jon's November 5, 2007 - Hi Jon, I was diagnosed with HF due to an unknown cardiomyopathy the day after Memorial day. Since then, I have had 3 echoes, the last done the week of Labor Day - all indicating an EF of 10 to 15%. I had an MIBI on 10 to 15 with pictures at rest, treadmill, then more pictures.
     The report my doctor received from my cardiologist said the following, "The MIBI did not show any evidence of ischemia. Of note, the gated portion suggested an EF of 55% which is a bit surprising. Another echo in the next few months will likely be needed to sort this out." Also, he said, "Sshe did exercise for us today and she reached a workload of 7.7 METs, her VO2 was 17.1 mL/kg/min, reflecting about 125% of her age, gender, and size predicted maximum."
     Any comments, thoughts, or ideas? This is very confusing and I don't know whether to feel hopeful or not! Thanks for your input, and this great site! Eileen. 2danes4boo@comcast.net


Jon's November 8 reply to Eileen H's November 8, 2007 - Hello Eileen, This is very confusing for one reason. I must assume that what the doctor refers to as being "gated" results indicate EF during exercise. If this is the case, it is very good that your EF rises greatly during exercise. Your Vo2max is low, since a reading of 14 or lower qualifies for heart transplant, and a more usual reading for a healthy middle-aged woman would be about 30. On the plus side, exercise alone will definitely increase Vo2max results. You just have to stick with it. Be sure to clear any exercise plan with your doctor first. Jon.


Renee R, November 8, 2007 - Hi all, My husband has dilated cardiomyopathy. He is 50 years old and was diagnosed this past June. Last week he had a St. Jude's ICD put in Tuesday. On Wednesday after being released from the hospital, the lower lead penetrated the heart wall, causing constant extreme pain. He was rushed back and they re-did the surgery and moved the lead. He is really wiped out and upset about the entire thing - double surgeries, etc.
     Has anyone else ever had this happen? Or do you know of anyone that has had one of the leads penetrate the heart and what the outcome is later on? Any thoughts or insight you may have would be most helpful. Thank you. Renee. drinwi@charter.net


Debra S, November 8, 2007 - Hi Jon, I am finding it impossible to send messages to anyone through the board using their e-mail addresses. Have you heard this from anyone else? It goes to some strange program. Debra. r_steinberg@sbcglobal.net
 
Jon's note:Hi Debra, This is the first time I've heard of this. Has anyone else had this problem?


Peter S' November 8 reply to Richard A's October 30, 2007 - Hi, About ten days ago, my refill for Coreg (25mg twice a day) from my pharmacy plan came in as the generic version. I didn't think much of it since I have always assumed a generic was pretty much the same as the original and the FDA had to pass on it, etc. However, whether by sheer coincidence or not, my daily pulse reading suddenly went from a steady 60 to 65 to a somewhat erratic 50 to 54, that is with some pauses and PVCs. My blood pressure went down to 91 over 78 from a usual 107 over 68, although has recovered a bit. My exercise tolerance is diminished.
     Maybe something else is at work, but starting the generic Coreg is the only variable I can think of in my daily life since the begining of my new symptoms. I have mild to moderate pulmonary hypertension, CAD, and an EF of 45%. A lot of people are being switched to the generic version of Coreg. It would be interesting to learn more. PeterSperl@cs.com


Jon, November 14, 2007 - Hello everyone, Well it seems I found one drawback to speech software. <g> If your voice gets really hoarse from sinus congestion your software doesn't understand you very well. <lol> But here I am again, unfortunately once again backlogged on my e-mail. However, I will get caught up so don't be afraid to post.Jon.


Tony M, November 14, 2007 - Hi Jon, I am glad to see you're back. I found myself with viral cardiomyopathy late in 2000. Two months later an all-terrain vehicle crashed on top of me causing me to have multiple surgeries on my neck (which is now fully fused with a rod screwed into all 7 neck discs), both shoulders, elbow and hand. I also had a colon infection and had 2 feet of colon removed. I was in pain and not healing so I went to Pittsburgh for a stem cell study in January of 2006 and was found to have sleep apnea to the nth degree so that now my sleep doc confides that I was about to die in my sleep when he tested me.
     I now have almost normal ejection fraction instead of hovering in the low 20s to 30s as during the last 5 years. I returned to work at a geotechnical lab and work out with weights again. I take all the supplements Jon recommends as well as others including creatine, fish oil high in DHA, EPA, C0Q-10, L-Carnitine, and ribose. I also read Dr.Sinatra's new book about supplements and the newly found potential benefits of Ribose. I recommend this highly for those with fatigue and heart failure.
     I hope this inspires others. I fired bad doctors, hired good doctors, read this site and followed my instincts in some cases. For now I live life as a new man and get up running while I can and living a strict life style which for me has helped. I advocate a sleep study to all those with heart failure even if you don't think you have it. I still have wobbly legs on some days but don't complain about it now that I have healed from the surgeries and have normal oxygen levels. Tony M. ynotmyrick@yahoo.com


Terry H's November 14 reply to Peter S' November 8, 2007 - Hi Peter, I switched to generic Coreg at 6.25mg twice a day on Tuesday, November 6th with so far no changes I am aware of. I have been doing a lot of physical work the last few days and so far, so good. haystks@diamondnet.us


Marty C's November 14 reply to Debra S' November 8, 2007 - Hi Debra, I've had difficulty using the e-mail addresses people post here on the site as well. The problem is that many people have very effective spam filters that only allow e-mail from people they've designated as "safe."
     Everyone who posts here should take this into consideration if they want to hear from others with good information. Having a spam folder instead of setting your e-mail up to reject messages from unknown senders allows you to periodically check those messages instead of blindly refusing them. I hope this helps. padre45@aol.com
 
Jon's note: For what it's worth, I spend a lot of time composing replies to e-mail messages. When one bounces back because of such a spam setting, I refuse to reply further, and am very irritated that someone has asked me for information and then set an obstacle in the way of receiving it. It is a waste of my time and effort. I use Outlook and find that a combination of junk e-mail settings and the rules Wizard eliminates 90% of my spam.


Eileen H's November 14 reply to Jon's November 8, 2007 - Oops, Jon! I just looked and saw my typo: my VO2 was 27.1, not 17.1 and I am 55 years young! I just don't understand why my doctors are content to wait until mid-January to do another echo, when my MIBI report was so good. 2danes4boo@comcast.net


Roger H, November 14, 2007 - Hi Jon and all, It is great having you back again. Back in March or so, I started with chelation in a study group. Next week will be the 30th IV treatment. In this trial, we will not know if we got the real thing or a placebo till the end of the study, which may be another year or so!
     I've retired and gained about 5 lbs, even closely watching what I eat. I'm still at 300mg sodium intake daily and watch my carb intake, being diabetic, walking at least 2 miles per day and working out on the total gym but I am still having trouble with my weight! I'm with the Veterans Administration and they switched me to all generic, from my Cozaar, Coreg, and all the rest. I've been seen that a lot of you are cold after taking Coreg - me too. Now with the colder weather, I'm cold most of the time! Roger. rkharmony@bright.net


Terry H's November 14 reply to Peter S' November 8, 2007 - Hi, Since my reply, my beautiful wife tells me I have actually been on generic Coreg from the start. I started getting it from Canada and just switched to Wal-mart. Sorry, I didn't look that closely before. She takes such good care of me, I'm a lucky guy. haystks@diamondnet.us


Mark M's November 14 reply to Jon's October 27, 2007 - Hello Jon, A new paper just came out in NEJM on CRT for heart failure. There isn't anything revolutionary about it, but it's worth noting. I'll send you a copy, if I can figure out how to get you an attachment. Mark. moeglein@qualcomm.com
 
Jon's note: You can send attachments to me at the following e-mail address if you put the proper symbol in place of the word at and leave out the spaces - theform at CHF patients.com.


Robin, November 15, 2007 - Hello, My father went to the doctor last week because he could not breathe and got out of breath very easily. The doctor told him it's probably something coming on and gave him an inhaler. He went back today because it's not working. His doctor put him on a heart pill, potassium and a water pill. He wants him to rest for 48 hours in bed and if he is no better he will put him in the hospital. He thinks he has congestive heart failure. I am so worried about him and can't stand the sick worried feeling I have.
     Is this going to kill him? Everyone is trying to keep me calm and is saying it will be fine, but I did some research and I don't like what I see. m2jm05@aol.com


Karen K's November 15 reply to Marty C's November 14, 2007 - Hello Everyone, I am one of the people Debra had problems accessing through the site. I don't know why but I do not have spam filters that would have caused her message to not reach me. I signed on just for the heck of it and tried sending a message to Debra from the site and had no problem. Karen K. karenk@machlink.com


Tony M, November 16, 2007 - Hello Jon, I am so glad you are back as I stated before. I just read Amy Silverstein's book "A Sick Girl." It's a very motivational book and informative to CHFers and to their family members. I read the book in 3 days it was so good.
     This tough, sweet girl at first fought doctors, fought the medical procedures and finally relented to have a heart transplant 19 years ago at the age of 23, while enrolled in law school. She went on to finish law school and get her license, get married to her boyfriend who was there when she got sick the first time and realized she had a grossly enlarged heart. She details how even today she still has to wear a mask of sorts to hide the bad days so she can remain "normal" to her friends and family. It's compelling and motivating.
     I realized my mindset to fight back to get well by looking for better doctors and exercise (she runs 4 miles daily) was similar to hers while reading the book. She is a very good writer and I think this a motivational must-read to all the forum readers of Jon's web site. Tony. ynotmyrick@yahoo.com


Richard A, November 16, 2007 - Hi Everybody, Thanks for all your comments. I'm actually "lucky" in that my corporate HMO insurance co-pays are basically 20 dollars per month for Coreg and 10 dollars per month for generics, so the difference is not all that great for now. I take 37.5 mg twice a day.
     My cardiologist has said that the method by which Coreg reduces blood pressure is pretty well understood and pretty immediately noticeable and measurable. So, if you feel the same and get the same short-term results from generic carvedilol, you are probably okay in terms of blood pressure control. It is the reasons for the long-term benefits on cardiomyopathy (increased EF, reduced heart size, and ultimately increased survival rates) that are less well understood but that have been demonstrated over time for good old Coreg. The generics, if they are slightly different forms of carvedilol, may be just as effective (or maybe even better) but we don't and can't know that for sure yet.
     That was the reason for my inquiry and why I'm probably going to stick with the branded version for now. Good luck to us all, and thank you, Jon, for all you do. richard.adamo@sri.com


Kate W, November 16, 2007 - Hello All, Has anyone gotten without a beta-blocker? I have had heart failure for 12 years up and down with EF from 10% to 35%. For several years I took a full dose of Toprol-XL. I was so sedated and tired I could not work and I gained 75 pounds. My husband left, so I had to work and now I take Coreg and usually take 3 to 6 mg or so twice a day. Everytime I go up in dose I can't function. I know it caused my weight gain due to high insulin. I do know about all the good stuff it supposedly does.
     My question is, has anyone gotten a lot better without a beta-blocker, and while all the other right things? I forgot to take my meds yesterday am and went to work and felt so much better, like a normal person. Today I feel tired again. I wonder if I stopped taking it, could I feel better, was able to exercise and lose weight, and my blood sugar comes down, if in the end I would be better off. My BNP is normal. I also take 50mg losartan. I have the kind of doctor that just shrugs and says he doesn't know whenever I bring this up. kawh@wavecable.com


William J's November 18 reply to Tony M's November 14, 2007 - Hi, I was very much interested in Tony M's post, particularly the note about his participation in a stem cell clinical study in Pittsburgh. Tony mentions that as a result of that clinical study he has had a major heart recovery. I am very much interested in being included in a stem cell study and have found the process quite difficult. The protocol or "inclusion and exclusion" criteria can be difficult to overcome. In addition, many studies want you either to be totally healthy other than your CHF or have inclusive health problems such as angina, etc,..., which I do not have.
     I understand that the studies are not so much to help the individual participating in the study but to reach conclusions to help the many after the study. I also understand that these studies are mostly funded by manufacturers or drug companies looking for positive facts. Some studies show great promise and others can be disastrous. Stem cell studies cover many areas and I wonder if Tony would share his experience in getting into the study with us. Budjoy4@aol.com
 
Jon's note: I could be wrong, but I believe that Tony was not actually in stem cell trial. As I remember it, it was the testing to see if he qualified for the trial that brought to light problems for which he was treated, and those treatments helped him. Tony, please correct me if I'm wrong.


Christine S, November 19, 2007 - Hello, Could someone please help me? My daughter is 30 years old. She was diagnosed with DCM in May of 2006 with an EF of 39%. She takes 6 meds including Coreg. She has not been to a doctor in a year but does take her meds.
     What things can change in a year that she needs to be under a doctor's care? I know she needs to but she won't go. She says she is tired all the time more now. She is depressed and is single mom with 3 and 6 year olds. How can she rest with 2 kids? Would she be eligible for a caretaker of some sort so she can rest and then maybe eat better? I am so worried and stressed, I just don't know where to turn anymore. Any support would be so appreciated. I thank you, Christine-Sue. Oh, also, how long is it possible for someone to be in denial? Csue7782@aol.com


Peter S' November 20 reply to Terry H's November 14, 2007 - Hi Terry, Thanks for your comments about being okay with generic Coreg. My initial concern (my post of November 8, 2007) I now believe was overdone and I think other factors were at work. Nevertheless, I will be interested to hear how others of Jon's audience may react as their phramacy plans gradually moving them out of the brand name. PeterSperl@cs.com


Jennifer M, November 21, 2007 - Hi, I posted here last year when my fiancee was diagnosed with dilated cardiomyopathy. He was also diagnosed with stage 3 liver disease 08/15/2007 associated with his Hepatitis C and long suffering of alcoholism. I found him dead on our living room couch at 3:30 AM 10/07/2007. The preliminary autopsy showed congestive heart failure as cause of death. Toxicology is suggesting but not conclusive yet, morphine toxicity. Yet, he knew. He was telling me for the past month or so that if he passed away, to get placement of his children. He died one day before his 36th birthday and on his birthday I got placement!
     In September, we drove past the cemetary and he blurted out, "I am going to be there soon." He had recently asked me what kind of funeral I was going to plan for him. He told his best friend 3 weeks earlier what he wanted his children to have of his possessions. I believe the angels come down and prepare you, and I believe he was prepared. I don't fully believe you are prepared if it is accidental. So, I think congestive heart failure was primarily responsible.
     He was complaining for 2 months of weight gain, trouble starting the flow of urine, vomiting, shortness of breath and "just generally not feeling well." All they did was keep upping his diuretics. He was in doctor's office the Monday before he passed (the 1st). Clinic notes stated his heart rate was 100 (meds typically kept him at 82 or so) and stated he had tachycardia. The notes also stated "the weight seems to have come on quite rapidly" and "the weight gain is concernng" however "no clinical evidence of congestive heart failure." His EF had doubled in August and was at 33% from originally 15 to 18%. In August they also said his heart had shrunk to normal size. An X-ray on 09/20/2007 stated "heart normal in size." How then could the autopsy show "heart quite enlargened?" This doesn't make any sense? Does anyone suspect this was congestive heart failure that was undiagnosed, dismissed or untreated?
     They were concerned he was slipping into painkiller addicition as a substitute for alcohol, and he even admitted it to me, but also said he really was in pain and didn't feel right. I am thinking they maybe dismissed him because they thought he just wanted painkillers and didn't also look at actual physical obvious symptoms. I also think for him the painkillers were both to treat true pain and discmfort but also becoming an addiction. He had just been prescribed the morphine that Thursday (3 days earlier) and had previously been on oxycodone. I now find out how dangerous morphine is to someone with a weak heart because it weakens the heart. Why on earth would they prescribe that to him? Also to someone who they were concerned about addiction with? His primary physcian had first told pain clinic not to prescribe anything, then said okay with parameters. Then clinic walked him out with 150 morphine pills! None of this makes any sense! jennzoey@charter.net
 
Jon's note: I am very sorry for your loss. Morphine is often used in end-stage congestive heart failure because it is both a venodilator that reduces load on the heart and an effective way to combat anxiety.


Barbara R, November 26, 2007 - Hi, I went to see my PCP because I had been feeling fatigued. I had been experiencing heart palpitations and shortness of breath, but I really thought it was more of a consequence of peri-menopause and smoking. The PCP did a blood test that he said was specific for heart failure and it came back slightly elevated. I'm not sure what the test was (I am assuming it was BNP) but my score was 3.41. I was hoping someone could explain this score for me. I am 42, female and live in Canada. I am scheduled for an echocardiogram in a couple of days. Thanks, Barb. mabajara@rogers.com


Lori K, November 26, 2007 - Hi Jon, I have not posted in about a year but wanted to get feedback on a few things. I have had CM for 6-1/2 years and have asthma and adrenal insufficiency. I take Altace, Zebeta, Singulair, Cortef, Nexium, and Flovent. I take torsemide as needed. The last few months I have had lots of nausea, belching, dizziness and more SOB this past week. I have not gained weight. Does this sound like worsening CHF?
     I get an echo tomorrow, so that will help me know more. I also really wondered if anyone has read the book "Sick Girl" by Amy Silverstein, a 19 year out heart transplant patient? Transplant was my hopeful final step if needed. She seems like she has hated every day of it. I wondered if she would be more accepting if she had been sick longer with CM? Anyhow, it is great to see you are still doing your thing. Jon, this site is a Godsend. Lori. thegoof86d@aol.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, 2007, 2008 Jon C.

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