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

Donna V 4-3     what is this test and why have it?
 
Jason S 4-3     seek New York City heart failure doc
 
Roger H's 4-3 reply to Scott B's 3-29     too high priced for me
 
Marcia H's 4-3 reply to Bonnie K's 3-29     gout experience
 
Peter S' 4-3 reply to Jon's 3-31     different presentations, writing styles & difficulties
 
Bob D 4-3     doctors and CHF causes
 
Jeannine L 4-3     Vescell therapy
 
Bonnie K 4-3     thank you for replies about my mom
 
Russell T 4-3     seek ideas about my symptoms
 
Karen S 4-3     seek ideas about SSD appointments
 
Janice S 4-3     seek return-to-work experiences and more
 
Sharon L 4-4     how do you deal with bronchitis?
 
Lydia M 4-4     I am going to try an experimental therapy
 
Tom S 4-4     seek experiences with Johns Hopkins in Maryland
 
Maryann H 4-4     what to expect with father in end-stage illness
 
Jon 4-4     donations last month
 
Michelle F 4-5     seek Imdur/isosorbide experiences
 
Sandy N's 4-5 reply to Jim C's 3-31     keep up the good work
 
David W 4-5     disability, EF, age, and more
 
Wayne R's 4-6 reply to Jeannine L's 4-3     seek VesCell therapy data
 
Bob 4-7     seek any ideas
 
Donna V 4-7     it was a CT scan
 
Scott B's 4-7 reply to Russell T's 4-3     stay on top of it
 
Valerie R 4-7     sorry for posts delay
 
Lori K 4-7     prednisone and electrolytes question
 
James N 4-7     any ideas on switch to Toprol-XL from Coreg
 
Peter S' 4-7 reply to Sharon L's 4-4     dealing with bronchitis
 
Jon 4-10     update, thanks, down time
 
Lori K 4-10     any thoughts on diuretic use
 
Donna V 4-10     seek aortic aneurysm
 
Bud J 4-10     seek biventricular pacer experiences
 
Sharon L 4-10     update on bronchitis, which became pneumonia
 
Julie B 4-10     just diagnosed and scared
 
Brian M 4-10     seek experiences with Ohio docs
 
Whitedove A 4-10     could my kids inherit this?
 
Kathy M 4-10     seek info on disability & earning extra money
 
Fred F 4-10     seek cardiolite stress test on oxygen experiences
 
Lori K 4-10     seek Florida CHF docs & more
 
Phyllis R 4-10     seek Idaho CHF doc
 
Jon 4-10     some extended CHF guidelines
 
Ben B 4-10     better mortality stats for heart failure
 
Scott B 4-12     seek headache experiences and suggestions
 
Mike I's 4-12 reply to Kathy M's 4-10     Social Security disability and other income
 
Jill D 4-12     chat board is available online
 
James N's 4-12 reply to Brian M's 4-10     I have the same cardiologist
 
Scott B's 4-12 reply to Lori K's 4-10     diuretics and the trots
 
Scott B's 4-12 reply to Brian M's 4-10     tough decisions but plenty of hope
 
Dave Wilson 4-12     I got a really bad infection
 
Simone C 4-14     ACE inhibitor question, also alcohol question
 
Lowell P 4-14     Pro-BNP numbers question
 
Tom S 4-14     will be getting device implant and more
 
Donna V 4-14     does anyone else have Marfan's Syndrome?
 
Chuck F 4-15     seek bad experiences with biventricular pacemakers
 


Donna V, April 3, 2006 - Hi Jon, I cannot get to where I want to be on the site. Earlier this week I had a freebee, make-up echo so I could get a clear copy to take to my CHF guy next month for my annual there. I had an echo in late November but that tape would not copy. My doc's office called and on Monday I'm to have some CT angio thing to check out my aorta (not the valve). My doc said to not freak but I do. What is this test and what are they looking for?
     The echo this week was uncomfortable and the tech people - it took two of 'em - had a hard time. I'm told dye is involved with this next test and it should take 30 minutes. How can one's aorta change in 4 months? Good news from my cardio is that my heart size has shrunk to 5.5 cm and my EF is up to 25%. Today he even mentioned 30% and I vote for that one. This test thing worries me in spite of my doc saying not to. It's not his heart, is it?
     Tell me what you can about this test and why I might be having it? Thanks and good wishes. I will send another check soon. Donna V. dmvditty@aol.com
 
Jon's note: Based on this, I don't know. It sounds like a diagnostic cath but that's just a wild guess.


Jason S, April 3, 2006 - Hello, My name is Jason Shershefsky and I have a father who has been diagnosed with congestive heart failure. He is almost 81 years old and his breathing when at rest has gotten dramatically worse, to the point where doctors give me conflicting ideas as to where his problems lie. One doctor says his x-rays indicate that he has pneumonia and another says it is caused by the failing heart. My father feels so bad between the CHF and his inguinal hernia problem that he feels that death at this point is easier than living.
     My father's doctor is his PCP, however, he is not a CHF specialist. I knew nothing about the answers I got on this site before. I was wondering if any of you could help me out by telling me what CHF specialist you would recommend in the New York City area. If you could, I would greatly appreciate it; even outside of the NYC area would be fine. Please just help me find the name of someone that could ease my father's pain. Thank you, Jason. JasonShershefsky@gmail.com


Roger H's April 3 reply to Scott B's March 29, 2006 - Hi, Since I visited that site, I get the monthly newsletter. This month there was a clip that Paul Harvey did on their work. In another clip it was mentioned that the cost is $30,000 to $35,000 for now anyway - way too much for me! rkharmony@highstream.net


Marcia H's April 3 reply to Bonnie K's March 29, 2006 - Hi, I have suffered from gout for years and it is controlled with colchicine and probenicid most of the time. Unless, of course, I get a hankering for a forbidden food like prawns! Cherry juice also helps during an attack. It is so painful at times that you literally can't walk. mhilley@kpunet.net


Peter S' April 3 reply to Jon's March 31, 2006 - Hello Jon, I'm glad to hear of progress on your presentation, though I know it is always painful to cut stuff you would like to say. Will you end up with two versions: the long and the shorter? I know you can't tip your hand as to precise content right now, but I assume your fans will eventually be brought in. As a quasi-professional writer myself, I admire your succinct and easy-to-understand style - much harder to be that way than verbose. As an example, everyone should re-read your brilliant summary of March 31 in reply to Richard M's of the same date. PeterSperl@cs.com
 
Jon's note: Actually, I am now completely changing the nature of the presentation to make the most impact in the least time, which requires getting doctor's attention without making them too defensive at the same time. The long version I am saving for what I hope will be a later presentation.


Bob D, April 3, 2006 - Hi people, I am having tons of fun with the SSA and VA systems. I am 53 and I think I'm done working for a number of reasons. I have CHF, and diabetes. I was diagnosed with chronic back pain in 1980 and discharged from the military in 1980. With this chronic back pain, I did very little exercise for 26 years. My back has become worse. I believe that my CHF is from the lack of exercise and my weight (300 lbs) at 6 foot 1 inch. I am down to 260 lbs now but obviously still have problems.
     So, my silly question is: How does one find a doctor to agree with the theory of poor mobility causing heart failure?Also, does the SSD take into consideration the fatigue and side effects of the medications to control all this? I do suffer headaches and muscle cramps as well, not to mention dizziness and other problems. My eyesight seems to vary quite often. Is this common? Thanks. Frustrated in California, but too stubborn to give up! As a side comment, CHF is not a death sentence! I am now at 9-1/2 years with CHF! bob.dow@comcast.net


Jeannine L, April 3, 2006 - Hi Jon, Since you are so uncertain about TheraVitae's VesCell therapy, why don't you fill out the patient questionnaire at www.vescell.com? It's free and there's no obligation. Once the treating physicians in Bangkok review your records, they would be happy to talk with you in detail about the treatment that is offered. You would also be able to speak with other patients who have received treatment. There are a lot of people who rely on your opinion. Why not give it a thorough evaluation before making a decision? jeannine_lewis@yahoo.com
 
Jon's note: Actually, I have been corresponding with company officers at TheraVitae's highest levels and have been sent almost a dozen informational messages. I am completely on top of what they offer, as they present it to me anyway, and thus don't see what further information would help me make any decisions at this time. I have spoken with therapy recipients as well as reading trial results. Believe me, the company offficers want me on their side and have been sending lots of information, some of which I doubt that patients usually receive. How much more thorough do you believe I should be, and how would I accomplish that?


Bonnie K, April 3, 2006 - Hi Tom S and others who replied to me, Thank you for your thoughts. I too, think my mother may have gout or she may also be oxygen deficient but she is refusing to see the doctor. She is 82 years old and the most stubborn (but wonderful and caring) person you can possibly imagine. I've suggested dark cherries or cherry juice since it doesn't involve a doctor (hers is a PCP and not a very good one at that. I am just so sad and frustrated to see her in all this pain, possibly needlessly. Thanks again. Bonnie. bkokamoto@msn.com


Russell T, April 3, 2006 - Hi, My name is Russell. I am a 19 year old male, non-smoker, non-drinker. This all started around the end of January, where I noticed severe palpitations that are worse when lying down, and very loud. I went to the ER and it turned out I was low on potassium. Now since that day, every day I experience palpitations and a racing heart, even while sitting down and not doing much, my heart rate is always 99 to 110. My heart rate is the fastest and pounding the hardest when I rise out of bed in the morning, use the bathroom, after I eat, or after very light exercise. I get tired and out of breath quick. Along with that I get frequent attacks each month with severe diarrhea, cramping, vomiting, and dehydration that usually last 24 hours or more. The first time it was stomach flu on New Year's Eve, ever since then there has been no found cause.
     I've been through every kind of test imaginable at the emergency room, blood/urine/stool, x-ray, EKG, CT scan, often multiple times and they always come back normal (except the low potassium that I frequently get). It's like my body will not absorb potassium, or depletes it very fast. Well anyway, I also notice that since that day in January I sometimes get phantom-like chest pain (I've been to the emergency room for that too, with no found cause), it can be intense or light, lasting a few minutes or hours, although there is a bruise that started as a rash under my right breast at the moment. I also feel quite dizzy and spaced out sometimes like I'm in a fog, and I very frequently get migraine headaches - not everyday. All these things occur usually separately at different times.
     I'm feeling tightness in my chest lately too and short of breath. I have little or no appetite for a long time as well. I sometimes try to force myself to eat but then I just feel sicker and sometimes throw it back up. No I don't think I am malnourished (as all my blood tests are normal), I'm just never hungry anymore.
     I guess it's also worth mentioning that I have terrible heartburn almost daily. One thing that boggles me is that I have been gettting a lot more nightmares since January too. I wake up with the classic anxiety symptoms and my anxiety has gotten so bad now that I am afraid to go to sleep some nights for fear of dying. I just spent two nights in the hospital with a severe attack of vomiting and diarrhea, I lost so many minerals I stupidly took 5 potassium pills which landed me in the hospital. I had to be given tranquilizers to get to sleep. I realize a lot of this is in my head but I just can't get rid of the feelings.
     Also, my uncle died that January shortly before this started happening - my health on a rapid decline and all these anxiety problems - just a week or so before the first episode, but could his death alone have such a huge effect? People tell me I'm hypochondriac, I do obsess about my health all day long, every little ache and pain, I admit I spend so much time looking up diseases I think I have online, that I haven't done homework in weeks, but all of this just from that one event?
     I don't have health insurance nor am I eligible for it, I'm only able to use the ER (financially), though one or two doctors there have suggested I see a cardiologist for these ongoing heartbeat sensations, and the're going to help me find one. But still, does anyone have any thoughts? darkside94136395@aol.com


Karen S, April 3, 2006 - Hello everyone, Social Security just contacted me with a time for my doctor and therapist evaluation. Currently my EF is 15%, and like a lot of us, I have good days and some really bad days. I am sure I cannot work as I have days that simple household chores wear me out. My doc gave me a prescription for a nap a day. <lol> Does anyone have some advice for me regarding the appointments? Thanks! Karen. cowgirl94952@yahoo.com


Janice S, April 3, 2006 - Hi Everyone, This is my first time post, my apologies for the length! I'm not sure of the rules here, so hope my post is in line. I was diagnosed with hypertensive dilated cardiomyopathy almost one year ago (April 7/2005) and have been off work ever since despite my desire to return to my job. I am a single mother of two children, 19 and 21 years, who don't really understand how ill I've been despite my efforts to discuss it with them. My daughter has been quite supportive but my son thinks I'm just being lazy. I was diagnosed as Stage C, class 3 to 4 with left bundle branch block, and an ejection fraction of 20%.
     By August an echo showed that my cardiac function had improved considerably although how I personally feel has not. I also have fibromyalgia, a sleep disorder in which I never get into the deep, restorative sleep phase and restless leg syndrome, an 8-year history of high blood pressure that hasn't been well controlled, asthma, hiatus hernia, high cholesterol and high triglycerides. I have no coronary artery disease found on my cardiac catheterization but it did confirm the numbers found on my stress echo.
     I am participating in a cardiac rehab program but can't always attend due to illness, doctor's appointments that can't be rescheduled to another day, and hospitalizations. I was considerably overweight at the time of my diagnosis but have lost 25 lbs in the past year due to ongoing nausea and loss of appetite. I continue to have problems with shortness of breath and fatigue.
     My meds are aspirin at 81mg daily, Altace at 10mg twice daily, Coreg at 25mg twice daily, Nexium at 40mg daily, hydrchlorothiazide at 12.5mg daily, Lipidil Supra at 160mg daily, Celexa at 40 mg daily, Imovane at 10mg at night, Clonazepam at one mg at night, Mirapex at 0.75mg at night, Advair at 250 diskus 1 puff twice a day, Flonase at 2 puffs to each nostril at night, Ventolin at 2 puffs four times a day as needed, and Nitrospray (up to 3 sprays) as needed.
     I was hospitalized 3 weeks ago with what was thought to be gallbladder related (ruled out). Now I have been told I have a fatty liver and a possible lesion on my liver near the gallbladder. My cholesterol and triglycerides are back to normal. My blood pressure continues to be poorly controlled.
     Does anyone know whether there is a corelation between DCM, the meds I'm taking, and liver lesions or had a similar experience? I also continue to have episodes of chest pain, which is relieved with the Nitrospray but I am frustrated by doctors who question this because they claim that chest pain doesn't come with cardiomyopathy and I don't have angina because I don't have coronary artery disease. (Jon's Note - it is well documented that a small group of people with no coronary blockages do get angina - I'm one)
     Prior to this recent hospitalization I was cleared to return to work in a modified capacity but my insurance company who pays my LTD benefits didn't approve my return. Because my doctor only had me working 3 days per week after 8 weeks, they questioned whether I was ready to return. They think I should be at full duties and full hours within 6 weeks (something my doctor doesn't think I will be able to do). I can't believe that an insurance company would prefer to pay LTD benefits rather than assist someone to have a successful return to work.
     I have a stressful job working for a union where I negotiate contracts on behalf of union members and represent them at grievances up to arbitration, discipline, terminations, workplace illness and injury and LTD issues. I love my job and am anxious to return to it but it feels like people are afraid to have me go back in case something happens. I'm so bored and so focused on how poorly I feel that I think going back to work would be positive for me, especially emotionally.
     My employer has been supportive throughout the past year and has told me that they will meet whatever modifications, restrictions and accomodation I require. Have other people been able to return to work successfully on a full-time basis to their previous duties? Thanks for the opportunity to vent! jstoveld@sympatico.ca


Sharon L, April 4, 2006 - Hi all, I got my first viral infection in five years, and it had to be a chest cold. We think my CHF came from a bad flu virus that caused heart damage in early March of 2001. I feel short of breath from time to time and am coughing stuff up. I was at a doc yesterday who understands my situation and she listened very well to my chest. If I feel in distress, I am to go to emergency. My pharmacy recommends a cough syrup with guiafenesin to thin the mucous. How do others cope with bronchitis? lyons@sasktel.net


Lydia M, April 4, 2006 - Hello all, I have not posted for a long time and I hope you are all doing well and staying in the moment. I have also been in touch with Dr. Patel. I have recieved information from Bangkok and received a phone call from their heart center. The cells they use come from the person's own blood. There have been over 100 people that have had it done. I have also received telephone numbers of people who have recieved the treatment, who want to share their experience. A lot of them were very seriously sick. One girl I talked to was only 34, had children, and was on the couch most of the time, because she had hardly any energy left. She took this leap of faith because she believed it was her only hope. She now feels great. Another woman dropped many medications and is feeling wonderful. I too am going to go to Bangkok. It is all in God's hands and I believe that He is opening doors for a lot of people. But I always say, "Thy will be done." God bless all of you. In Christ, Lydia Moore. landers48@msn.com
 
Jon's note: Best wishes. I hope this therapy is all people want it to be. I should note that one of the company's officers told me they had serious trouble getting accurate follow-up information on the majority of their patients, so even they are not sure what medium to long-term results are at this point.


Tom S, April 4, 2006 - Hi, Does anyone have any experience with the Johns Hopkins Cardiac Surgery or Cardiology departments at Baltimore, Maryland, Dr. John Conte in particular. I would be interested in your experience(s). Thanks. bigheart@muchomail.com


Maryann H, April 4, 2006 - Hello, Could anyone give me any info on what to expect for my father who has been given only a few weeks left? He has decided to stop all meds, is in bed, has no pain and shortness of breath, but very little. The nurse said it could be weeks. The family is taking care of him and his congestive heart failure doctor's office calls every day to get an update. Is there anything I should know to do or ask. If you have any input please let me know. mahall1958@hotmail.com


Jon, April 4, 2006 - Hi everyone, Thanks to all who donated last month to CHFpatients.com, Inc. Twenty-two people donated. Jon.


Michelle F, April 5, 2006 - Hello, My father went into the hospital because he was having trouble breathing. Previously he would go in and have the lung tapped to remove the fluid that builds up from his congestive heart failure. He never had angina but the doctors tweaked his medicines and added Imdur, among other things. From the moment they started "tweaking" his meds he has gone downhill extremely fast.
     One drug called hydralazine gave him tremors and made him hallucinate. We took him off that. The Imdur has me worried. If my father has low blood pressure why would they give him Imdur? He is already taking Coreg. Has anyone had a bad experience with Imdur? micheleforan@aol.com
 
Jon's note: If he does have low blood pressure, Imdur would seem to be a bad choice as would hydralazine.


Sandy N's April 5 reply to Jim C's March 31, 2006 - Hi, What a great site. Thank you for putting it together. With or without your low salt site you are indeed worth something. Thank you for sharing it with all of us CHFers. Keep up the good work! bleuskiiisgrl@yahoo.com


David W, April 5, 2006 - Hi, I just wanted to add my two cents in about Social Security. If you are over 50 it is much easier to get approved. If you are under 50 they make it a lot harder. If your ejection fraction is over 30% it is hard to get approval. If you are over 50 and have an ejection fraction under 30% you have a good chance of getting approved. Social Security thinks if your EF is over 30% you can do some kind of job. I have returned to work part time and my EF is only about 30% but I am functioning pretty well.
     My EF got up to 40% in 2003 and SSD dumped me. I had to appeal as I was worse then than now and I did win and did not lose a penny. I think SSD looks at what your docs say but it only counts for so much. None of my docs ever said I could not work - they told me to do what I felt like doing. I think EF and age are the most important criteria. Sometimes SSD sends you to one of their docs, which is kind of stupid as they are often just regular doctors and not cardiologists. If that doc thinks you are still pretty bad they listen to their contracted docs.
     They sent me to a regular doctor 60 miles away when I appealed my disability loss in 2003. They paid for my expenses to travel there too and that doc did not think I could work either. It is crazy but sometimes those of us with lower EF do better than those with higher EF. Jon, for example, has a higher EF but I think I am better off than he is and my EF is only 30% on a good day.
     My EF at diagnosis in 2000 was 14% so I am much better. Everyone trying to get SSD approval I wish you good luck and all I know to do is pray, God has always taken care of me especially when I am really down and feeling bad. The best thing to do is trust God and let him take up the slack for you because he loves you and will do it. wilsond537@aol.com
 
Jon's note: I think SSD is totally unpredictable myself but David is so right about EF not being linked to functional ability. It's even in the new CHF guidelines that this is so.


Wayne R's April 6 reply to Jeannine L's April 3, 2006 - Hi Jeannine, It was certain to be a topic sooner rather than later but I helped start this line of questioning with a January e-mail to Jon in which I said, "I'm writing to ask if you and others have the same slightly uneasy feelings as I do about providers of the stem cell therapy that is being so highly touted. You will notice that on their web pages, none of the patient testimonials give any measurable or quantifiable data on their before and after heart conditions. Why not? It is not enough to simply say that, "now I feel better." A lot of us have gone through a "feel better" phase with the standard medical reigimen..."
     Jon took the opportunity to explain that the term "stem cell therapy" was not always applicable - which I now understand. But my question has not changed and to date it has not been answered by anyone. If the improvements can be supported by measurable and quantifiable data, would you, or any representative of any company touting these therapies, please tell all of us where we can find such data. For me, failure to do so is tantamount to admitting that they are not truly viable. Thanks, Wayne R. whreos@earthlink.net
 
Jon's note: I must add here that this will not become VesCell's own little ad campaign, which is what they have been trying to make it, trust me. I will insist on names, places, all additional treatments done, medical history in some detail before treatment, cause of heart failure, all life style changes made, all surgeries or procedures done before or after, alternative or supplementary treatments, exact test results and when precisely they were taken after each type treatment, etc. If I am unsatisfied with the amount or quality of information supplied, I will not post it. TheraVitae actually started the original discussion of this treatment by asking one of their patients to post. I allowed a lot of discussion because any option should in fact be discussed and I hope this treatment becomes one good option for some of us. However, now it's time to put up some hard data or wait and see when USA trials are started.


Bob, April 7, 2006 - Hello, I am having trouble with my ACE inhibitor and ARB. It seems that ACE inhibitors and the newer ARB meds make me very anxious and raise my blood pressure. I know they are much needed in my treatment and also because I have one kidney, I lost one to cancer. I have high blood pressure but these medications make me quite anxious. My doctor I am class 3 CHF but my quality of life is pathetic. Any ideas or similiar experiences I can learn from would be appreciated. hawkdog86@aol.com


Donna V, April 7, 2006 - Hi all, Since my post of last week I had that mystery test on Monday, the 3rd. After the delays at the hospital with lost orders and such, the test was not a big deal. Eight hours instead of four without food was a big deal. First they took blood for creatine and BUN and my kidenys are just fine. I already knew that. The thirty minute wait for the blood work results ended up taking two hours. The test was a CT and nothing like a cath. It took maybe ten minutes. They shot some dye in my arm and ran me under a donut type scanner a couple of times. I remember a robot voice telling me to hold my breath only three times. The dye made me a little warm for a few seconds and it was done.
     I took myself right to a fast food place for food and thought nuts to sodium at that point. The food tasted terrible. Something about my last echo has them checking my aorta as being slightly dilated and even though my doc says it is no big deal and it has nothing to do with CHF. It is my aorta after all and the mind can go nuts. I am choosing to enjoy the spring weather and dig some in my yard. I'm praying it's a fluke and a bad echo and that my doc is covering himself.
     When I hear something I'll update. The doc is not in the office until Thursday so maybe nothing is about to explode on me. I'll take my new high-normal heart size and a little better EF! Another donation is off in the mail tomorrow. Thanks for all you do for us! Donna V. dmvditty@aol.comdmvditty@aol.com


Valerie R, April 7, 2006 - Hi Jon, I can't number the times this site has helped me! The patient must ask questions and be aware. Yesterday I was asking the doctor about all the side effects of amiodarone, the lung danger in particular. He said the x-rays would help with that, and I said, "What x-rays?" The last one was in June of 2003, so I'm off to get another one on Tuesday. I feel as if I have a good cardiologist, but I feel much of it is my responsibility too. He told me eleven years ago that I needed to keep on top of Pro-Time and other blood tests, and I do that but didn't know about the xray. I'll watch that now too. Thank you and all the other members who have made this site so wonderful. vgrogers@aol.com


Scott B's April 7 reply to Russell T's April 3, 2006 - Hi Russell, It's no fun to have so many health issues at such a young age. Although you have done a good job of outlining the symptoms you are experiencing, it is difficult to point to a cause with any certainty. Indeed, it sounds like anxiety is playing an important role in what is happening to you. This symptom can lead to the stomach upset and the stomach upset can lead to low potassium. For example, hospitals will give laxitives to lower potassium in a hurry. Low potassium can lead to heart rhythm irregularities.
     It's possible there is more at work here. What kind of exercise do you do to keep active? How do you find regular exercise? Is your weight in check? It sounds like the doctors are doing a good job to secure a cardiologist who can have you wear a monitor to figure out when and how frequently these heart related events occur. Best of luck. Scott B. kitchenerguy@rogers.com


Jon, April 7, 2006 - Hi everyone, Yesterday our cable modem was on the blink all day; really made me mad since I have prednisone-induced jitters and needed some way to be productive without a lot of physical activity. I hate this stuff but it was unavoidable this time around. Jon.


Lori K, April 7, 2006 - Hi everyone, I am in need of diuretics for the first time in 5 years of having DCM. I am on a steroid daily for replacement because my adrenals shut down production of cortisol. That happened 3 years ago and now I am finally starting to blow up all over with fluid. My EF was great last year at 68%, however the steroids are taking their toll. The nurse at my cardiologist's office said since I have gained 6 pounds in the last week, I should go on 20mg of Lasix for 2 days. How do you know if you need potassium? Do you have to wait until something bad happens?
     I am really concerned because the adrenals help control fluid balance and mine don't work well. I have lots of bananas and orange juice, any other suggestions? Thanks a million. Lori. thegoof86d@aol.com
 
Jon's note: Hi Lori, I'm assuming you're on a stable prednisone does, like maybe 4 or 5 mg daily. The only way to know what your potassium levels are is to have your blood tested regularly and eat roughly the same amount of potassium every day. Foods like bananas don't help much because they spike your blood potassium level, then it quickly goes back down. Prescription potassium pills are slow-release so you get slow, even blood potassium supplementation. Get the tests and keep getting them until your levels test stable on a regular basis, please, please.


James N, April 7, 2006 - Hi, I went to the cardio today and he's very pleased with my overall progress and such. He's decided to move me from Coreg to Toprol-XL. His reasoning is that my EF is near-normal, as well as other aspects of my heart, and I've not shown any rhythm issues, so Toprol should be able to handle the job. According to him, studies have shown the two are pretty much neck-and-neck for CHF with Coreg having better results at EF less than 30%. Since Coreg is a beta1/beta2/alpha receptor blocker and Toprol-XL is just a beta1 blocker, I like the idea (less impactful on the body overall). Any thoughts on the switch? Anything I should expect? noctaire@yahoo.com


Peter S' April 7 reply to Sharon L's April 4, 2006 - Hi Sharon, Your experience with viral bronchitis sounds like what I went through in March. Like you I had been free of any problem like that for years. Although I am not aware of any causal connecton between bronchitis and HF, what I learned is as follows: It is not always possible to determine whether acute bronchitis is caused by a bacteria or a virus, and often one leads to the other. If there is doubt, antibiotics are used in the first instance but if improvement does not occur they are discontinued. As I understand it there is no cure for the viral variety except for what the body itself produces as an anti-body. Thus treatment is aimed at symptom relief and one should see a doctor to get an Rx for what is needed.
     In my case I received a combination of promethazine and codeine in the form of syrup, plus prednisone. I understand it can take the body 14 to 21 days to get the invading virus under control and I believe elderly people, especially those with HF, should keep a careful watch to be sure other pulmonary (lung) problems such as pneumonia do not develop. PeterSperl@cs.com
 
Jon's note: One comment, usually in CHFers, a second antibiotic will be tried if the first is unsuccessful, to be on the safe side. I just went through this myself.


Jon, April 10, 2006 - Hi everyone, Well, I'm within a minute of meeting my presentation time with my actual presentation so I've about got it now. Unfortunately, I'll shut the forms down here on the 15th and they won't be back up until approximately the 20th, due to my absence. Thank you all for your patience in my erratic post-putting-up lately. I should note that we have added quite a few CHF specialist listings lately as our web site name circulates due to the upcoming conference presentation. Jon.


Lori K, April 10, 2006 - Hi again. I am adding to my prior post that I had a BNP test done today that is apparently high compared to all my previous BNP results but not emergency high, according to the cardiac nurse's message. I am to go on 3 days of 10mg Lasix starting tomorrow morning. I lost 2 pounds today from eating no sodium yesterday at all. If I need to lose about 7 pounds of water weight, does this sound like an appropriate treatment? Being a common sense person tells me if I lose all the weight in 1 or 2 days I may not need the third pill. On the other hand, I have read that many get much more Lasix in one day only.
     Any thoughts on this? I hate having to do this over a weekend when my docs are unavailable. I am trying to get my exact BNP level as we speak and my kidney function numbers as well. It's always a balancing act! Jon, thanks so much for all your insight, as always. Lori. thegoof86d@aol.com


Donna V, April 10, 2006 - Hi again, I finally heard something Friday from my cardio's office about that CT scan I had on Monday. Of course the doctor was not there and I did finally speak to a nurse. I'm not sure if she's a registered nurse or not. Someone was to call me Thursday and did not. It seems I have a small area of dilation/calcification somewhere in my aorta. I'm guessing, based on comments by the echo tech that it is near my heart. This "nurse" kept talking about keeping my blood pressure down (it is) and maybe a statin, and maybe surgery sometime and that I'll not blow anytime soon.
     So, can anyone clue me in to any questions I should think to ask this doc when I see him again (after two weeks ago of good report) on Thursday? I have to ask things fast or the man is out of the room. I see my CHF doc in a few weeks. I have vented to my very good site friends and don't know what I'd do without them or the site. I'm back to where I was before I found this wonderful site and learned so much more about me, cardiomyopathy and CHF. This seems new. Thanks, Donna V. edmvditty@aol.com


Bud J, April 10, 2006 - Hi, I had a biventricular pacemaker implanted about 8 weeks ago and it has performed very well for me and improved my breathing and activity level. I am a class 3 to 4 CHF patient. I was wondering if anyone else has had a biventricular implant, how are they doing with it and how long have they had it? Budjoy4@aol.com
 
Jon's note: Don't forget to also check the chfpatients.com/biosgate2.htm pages.


Sharon L, April 10, 2006 - Hi, An update: On April 4 I went to emergency because I couldn't breathe! They gave me ventolin and atrovent via nebulizer, and started me on levoquin 500mg once a day. Needless to say, after 4 days I can breathe again. My regular doctor added a Qvar inhaler until I get over this. I did have pneumonia according to the emergency room doc. The moral of the story is that things can change dramatically over a short period of time with me, and I'll bet others have experienced this as well. lyons@sasktel.net


Julie B, April 10, 2006 - Hello, I just got out of the hospital on 4/06/2006 and was diagnosed with CHF. I was so scared since it was my first ambulance ride and first hospital stay. I am still scared and wondering what my future will be like. I am on 4 different meds to get this regulated. I am only 37 years old and pretty scared and worried that something might happen in the future. Any help is greatly appreciated. I have decided that I will control what I need and change my life style. gimmeyurtots1@aol.com
 
Jon's note: Hi Julie, I was diagnosed in 1994 at age 36 when treatments pretty much stunk, but here I sit typing this, so you've got an even better chance at being around a long time.


Brian M, April 10, 2006 - Hi everyone, I've had CHF for about 8 years now and am 47 years old. I was doing great up until about a year ago, then started having problems and had to give up working. I am still fighting Social Security. I saw my doctor this week because I've been feeling weak and my blood pressure took a nose dive to 87/59. He did an echocardiogram and an EKG, then told me my EF was down at 15% and there is a problem with my left branch bundle and is setting me up to see another doctor about an implanted pacemaker and maybe a transplant listing.
     I'm getting scared now! Does anyone know anything about The Cardiology Center of Cincinnati and Dr. Gerlinger? Is he good? I'm new to Ohio and don't know the doctors in this area. Thanks for any help. pipefitter5972000@yahoo.com


Whitedove A, April 10, 2006 - Hi, I am new at heart problems but I think it has been there for awhile but ignored it, thinking back pain was the problem from several wrecks. I am 61 and was in the hospital over the weekend, and am now on Lisinopril. Yuk. My EF is 35 to 40%. Did I inherit this? Are my kids in danger? Thanks, Whitedove. copperapples2@aol.com


Kathy M, April 10, 2006 - Hello, I have been receiving Social Security Disability for 10 years. I am not considered medically fit to return to work. Several editors have reviewed a book of poetry I've written and believe I have a good shot at at least getting individual poems published. This involves a small amount of money - anywhere from 25 to a few hundred dollars.
     My cardiologist says that with my pitiful EF I cannot work as does my PCP who is concerned about neurological problems I have. I am having an awful time trying to survive on disability only. I've read the Social Security web site and it doesn't appear I'm allowed to earn anything and continue in the system.
     Has anyone had any experience with working and earning SSD? Thanks, Kathy M. kate_the_petal@yahoo.com


Fred F, April 10, 2006 - Hello, I am scheduled for a Cardiolite stress test with chemical induced "exercise." I also have emphysema and am on oxygen at 3 liters/minute and 4 liters with exertion. I cannot for the life of me find out if I will be on oxygen during either or both parts of this stress test. I don't know whether to take four or so hours of oxygen with me or not. Has anybody else ever had this problem? Any experiences? pffurr@aol.com


Lori K, April 10, 2006 - Hello again, Now I am really frustrated and need some help. I went on 10mg of Lasix and got the runs, but no increased urination! I did not lose any weight and the doc said wait a few days for my body to get better from the intestinal effects of the Lasix. Has anyone ever had that? The doc is saying I should try the 10mg again or use another diuretic instead tomorrow. He doesn't want to increase the Lasix in the event the diarrhea is worse. I am hoping they check my potassium beforehand since I have been really dizzy.
     Does anyone know a good CHF doc in or around Naples, Florida? I am supposed to leave this Thursday for our first vacation in 10 years. Bad timing for all this. Thanks for any help. Lori. thegoof86d@aol.com
 
Jon's note: Definitely get a second opinion - something is not right. If diuretic does not increase urination within 2 hours, either you are not retaining the kind of fluid normal in CHF (you can also retain fluid in the lymph glands that diuretics will not handle) or you have another problem.


Phyllis R, April 10, 2006 - Hi all, I am the new kid on the block. I've been dealing with CHF for awhile now but feel my docs are out to kill me. <g> I just found this site and man the news is better than my doc told me. He has given me the wrong meds so I am now going proactive with my disease. I live in southwest Idaho so does anyone know any good docs in this area? If so, please e-mail me the info and thanks so much. Phyllis R. phizless@hotmail.com


Jon, April 10, 2006 - Hi everyone, If you want something to do while the message board is down next week, eyeball the "extended recommendations" for heart failure treatment and management from the Heart Failure Society of America's journal. See www.onlinejcf.com/article/PIIS1071916405013783/fulltext?browse_volume=12&issue_key=TOC%40%40JOURNALS%40YJCAF%400012%400001&issue_preview=no&select1=no&select1=no&vol=. Whew! Jon.


Ben B, April 10, 2006 - Hi all, I don't know if this is here on this site but I just read something about the Seattle Heart Failure Model (see www.sciencedaily.com/releases/2006/03/060313182834.htm). This model supposedly takes into account all the recent advances in heart failure treatment and seems to have a somewhat more reasonable survival prediction mechanism. I believe survival is probably even better than this indicates for many people, but at least this sounds a lot better than the stupid 5 year rule. bdbrinkman@juno.com
 
Jon's note: What I consider an accurate statement came from a writer for theheart.org, who said that "heart failure is no longer a fatalistic diagnosis."


Scott B, April 12, 2006 - Hi Folks, I'm looking for a little help here. I have have been experiencing a problem with mild headaches around the area of my right temple (it is localized). I am not one to generally get headaches. One distictive hallmark of these headaches is that they come on quickly and disappear just as quickly (back to normal). The aches are noticable but not debilitating (they are bad enough to wake me up) but not bad enough to miss work. Nothing has really changed except that my weight is up from normal (not due to fluid retention, just bad snack choices).
     Does this sound familiar to anyone? Does this sound like it could be related to my CHF or one of my CHF meds (Altace, Coreg, digoxin, Slow K)? I have taken a duiretic and exercised through this problem several times now and it does not seem to help (or hinder) my condition.
     I plan to see a physician shortly but I have been trying to do some research first. In reading about "cluster headaches" it sounded similar. Of course, there are lots of more serious possibilities as well. Thanks, Scott Brown.
 
Jon's note: Cluster headaches are unbelievably painful but usually occur around the eye socket - then again, it's been 10 years since I had mine so the literature may be different now.


Mike I's April 12 reply to Kathy M's April 10, 2006 - Hi Kathy, I was called back to work as a consultant part-time for the company I retired from. The pay is pitiful (412 per month) but it is income. I reported it to Social Security and they told me it was not enough to report. They also followed it up with another call to confirm what they said. It seems you can make about 600 dollars per month before you have to report it. Just as long as it is not full-time regular employment. Mine is 20 hours per week or less. You can call them to confirm this. Good luck! msisbell@earthlink.net


Jill D, April 12, 2006 - Hi Jon and everyone, First and foremost I wanted to say good luck and thank you to Jon for doing this presentatation. I know it's been hard work getting the information and formulating what to say in the time alloted. You mean alot to everyone here so take care of yourself on this trip!
     Second, I wanted to mention that the free chat board we set up years ago for when Jon's is unavailable is still up and running. In case anyone needs to connect during the days this forum is down you're welcome to post whatever is on your mind. It is located at http://www.network54.com/Forum/20198/. maddjak@hotmail.commaddjak@hotmail.com
 
Jon's note: Thanks Jill. It turned out that making, printing, and putting together the informational packets and business cards has been as much work as the presentation. Bummer, took well over 1000 printed sheets to set up all the info packets alone, all collated, stapled, foldered, labeled, blah, blah, blah. I'm tired.


James N's April 12 reply to Brian M's April 10, 2006 - Hi Brian, Dr. Gerlinger is also my cardiologist. He's a good guy and very knowledgeable. I've had a few cardiologists in our area, including one other in his practice before I settled with him 4 years ago. I like him. He's fairly open with the patients and, even more importantly, he listens.
     My CHF came on out of nowhere then went downhill fast. I was at 20% or less, couldn't walk 30 feet without taking a break, you know the story. We tried medication - no change. We tried treatment for sleep apnea (I have mild apnea) but still no change. Finally, it came down to the BiV pacer or the transplant list.
     He sent me to Dr. Jeff Burroughs at Christ Hospital. It took some talking, but I finally convinced him to put in the device. He finally agreed after a t-wave alternans and my agreement to have an ICD implanted, which I wanted anyway. Two and a half years later, my EF is near normal, my heart size is in normal ranges, and my heart sounds are very good. At my checkup the other day, my blood pressure was 106/68 and heart rate was 76. Gerlinger's thrilled. <g> I garden actively and have recently begun taking Kung Fu and Tai Chi lessons. James. noctaire@yahoo.com


Scott B's April 12 reply to Lori K's April 10, 2006 - Hi Lori, I often get the runs while taking Lasix. Your dose at 10mg is quite low. Perhaps you need a larger dose to get a more meaningful diuretic effect. It would be interesting to take your blood pressure before and after the Lasix. After the Lasix, you blood pressure will be lower if the diuretic effect has worked. The low blood pressure could also cause lightheadedness.
     If you have not taken a water pill before, they can make you feel pretty disoriented until you get used to it. Having the runs will also cause you to become dehydrated, and as you suggest, you can also lose a lot of potassium. Good luck. Scott B. kitchenerguy@rogers.com


Scott B's April 12 reply to Brian M's April 10, 2006 - Hi Brian, You have some personal decisions to make. While I do not know your specific doctor, the recommendations make sense. Read up everything you can on heart transplant. Jon's resources are a great place to start. I personally know several people who have had a transplant and have been living an almost completely normal life with a new heart for years. My father had a transplant and it was an excellent experience. Pure magic. In the interim, a pacer is a great safety net. You have gotten everything you can out of your current heart, you are still young, and you have half a lifetime to look forward to.
     I'm not saying it's not scary but end-stage CHF is no walk in the park, not just for the sufferer, but for the whole family. Faced with the options, different people do different things. Feel free to e-mail me with any questions you might have. Unless some of the stem cell therapies work out in the coming years, I hope to hang on long enough to get to the point you are at (sick enough to be eligible for a heart transplant). Best of luck with making these tough decisions. Thanks, Scott B. scott.brown@sunlife.ca


Dave Wilson, April 12, 2006 - Hi, I just got out of the hospital yesterday. I thought my heart was the problem but my doc said I ate some food that was contaminated and I got a really bad infection. It sure has taken the wind out of my sails. I had a strees test and an echo while in the hospital and that really exhausted me. I didn't know infections could make you so sick so quickly. I had to call 911 at 2:AM Monday morning and go to the hospital. It seems like I get sick in April - I guess it is an unlucky month for me. Maybe I will be better next week. My heart is the same on a good day, my EF is 30%. wilson5@aol.com


Simone C, April 14, 2006 - Hello, I am very relieved to have found this site as my 83 year old grandfather has just been hospitalised for CHF. Although he'd been breathless on exertion for awhile now, I assumed it was COPD but he started being unable to breathe at night and his inhalers didn't help. At the hospital a scan, chest x-ray, blood tests, etc,..., found a leaky valve, an enlarged heart and he had a lot of fluid on his lungs which scared him. Thankfully the hospital got the fluid down and sent him home today feeling much better and more able than he has done in awhile.
     I was doing some research and came across this site (after scaring myself silly with the 40% mortality within a year figure). Anyway I still have loads of stuff to read but one thing I wanted to ask was about meds. He has been given an ARB (irbesartan) not an ACE Inhibtor. They also had him on a beta-blocker (atenolol) for angina but they stopped that after his blood pressure became low. He is also on warfarin.
     I was wondering why he wasn't put on an ACE inhibtor. He's not due to see the cardiologist for 6 weeks now so I'd appreciate anyone's thoughts on it in the meantime. My second question is regarding alcohol. He is fond of his whiskey and normally has two measures a day on 3 days a week and a beer on one other day. Is this high for an 83 year old with CHF? It seems a lot to me, but the doctor at the hospital ward today said it was fine. Thanks for any replies. simonecallan@yahoo.com


Lowell P, April 14, 2006 - Hello, My BNP is being measured using the new Pro BNP method. Last month it was 6500. This month it is 2400. The normal limits are up to 450. If you compare 700 using the old method and 100 as being normal the multiples are about the same. What do you think of these numbers, Jon? Lowell. Lpeppr3m@aol.com
 
Jon's note: I think given how drastically N-terminal Pro-BNP can change with age, and how different publications radically disagree about what is normal for different age and sex groups, it's perhaps not the best test. I've seen numbers all over the map called normal by different publications, from 100 to 900, so without a whole lot of study, I can't comment.


Tom S, April 14, 2006 - Well, I decided to take the plunge and go ahead with the Biventricular pacemaker/ICD. My implant date is April 28, 2006, starting at 6:30 AM. I can honestly say I am not particularly enthused by the prospect of this device, although I have an EF in the 5% to 10% range and a lot of PVCs. The cardiologist who is pushing the device says it probably won't do much to improve my EF so I had stalled for a long time even bothering with it.
     I have never had surgery and hoped I could get through life with no surgical scars or intrusions. Oh well, that looks like it will go out the window in two weeks. Poooofers. By the way, my type 2 diabetes has turned into full blown diabetes and I have to go on insulin after the implant, another loverly development. bigheart@muchomail.com


Donna V, April 14, 2006 - Hi Jon and all, Just an update. After these weeks of panic I again saw my cardiologist today to get the results of that mystery CT scan he ordered two weeks ago. It seems I have a dilated descending aorta near the root and it has nothing to do with the myopathy/CHF and is hereditary. My dad is almsot 90 and my grandfather died at 85, both tall and bony people, and indicative of Marfan's Syndrome. Abe Lincoln and basket ball players?
     After all the echos, cath, EP study and BiV device implant, it took a new new echo tech to question this aorta. I will be monitored every six months with more CT scans to watch the size of the dilation. My cardio is not terribly excited nor concerned so I'm calming a bit. There is also a question as to my BiV pacer being reset. I am to see a rheumotologist in June (earliest appointment) and I think to verify what cardiologist already knows.
     I see my CHF doc in a week or so and will have some questions for him. The best news remains that after the device implant, my heart size has gone from 8.5cm to high normal 5.5cm and my EF up from 5% to 25 to 30%. I vote for the 30%. My valves are now normal. My blood pressure is up some and good. All things are okay that were CT scanned - all my organs. Some days I feel almost normal. Does anyone else have this Marfan's thing along with the not so great CHF? Thanks and blessings, Donna V. dmvditty@aol.com
 
Jon's note: Don't forget to check the Me Too pages for others with your conditions.


Chuck F, April 15, 2006 - Hi All, I have listed several times in the past and replied to several as well. I am 47 years old, 2 past heart attacks, class 2 to 3 heart failure. In October last year I had a Dor procedure performed due to a large ventricular aneurysm. I felt fantastic for the first year. I have had an ICD for 2-1/2 years which has only fired a few times.
     Now my QRS complex is widening, I have developed a bundle branch block and my symptoms are worsening. I have read many rave reviews on the CRT Biventricular pacemaker, and I have worked with several patients that have had them. Has anyone had any unfortunate circumstances with this device?
     Any advice would be greatly appreciate and feel free to email me directly. chfrancis@adelphia.net


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.

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