Jon 2-16 family emergency
Jon 2-19 quick question - please reply
Tom S 2-19 "optimizing" my biventricular pacemaker
Bev T 2-19 seek sotalol experiences
Jacky B's 2-19 reply to Kathy B's 2-2 CRT or no CRT? update
Mary C 2-19 update - good news! & more
Chuck F 2-19 what is best geographic location for CHFers?
Cheryl A 2-20 very good experience at Cleveland Clinic
Mary C's 2-20 reply to Nancy P's 2-14 testing, being sure of what to do
Jon 2-21 thanks to all for their diabetes/test experiences!
Jon 2-23 oops!
Giorg's 2-23 reply to Bev T's 2-19 sotalol experience and more
Lynda Y's 2-23 reply to Chuck F's 2-19 good places to live with heart failure
Tom S' 2-23 reply to Chuck F's 2-19 good places to live with heart failure
Tunny G's 2-23 reply to Chuck F's 2-19 good places to live with heart failure
Henry T 2-23 questions about Express Scripts and Coreg prescription
Linda 2-25 message from Jon's wife
Mary C's 2-25 reply to Henry T's 2-23 getting a prescription approved
Donna V 2-25 I got the shingles vaccine
Robin W 2-25 seek experiences getting around in New York City
Shirley G 2-25 seek experiences with these meds
Ben B's 2-27 reply to Robin W's 2-25 experience getting around in New York City
Tom S' 2-27 reply to Robin W's 2-25 experience getting around in New York City
William B 2-27 does Coreg dose raising affect anyone else?
Karen K's 2-27 reply to Shirley G's 2-25 clonidine
David E 2-27 what can I expect?
Carrie I 2-27 does anyone else get this feeling after exercise?
Elaine F's 2-27 reply to Linda's 2-25 thanks for sharing
Jon, February 16, 2007 - Hi all, A serious injury to a close family member in Kansas City means I'm on my way there for the weekend. I'll be back Monday. Gotta go, this one is serious. Jon.
Jon, February 19, 2007 - Hi everyone, I'll be putting posts up and working on e-mail as soon as my MRI is finished this afternoon. In the meantime, I need some "real-life" input from people who have been tested for diabetes using an A1C (HbA1C) test. Did it accurately reflect your diabetic or non-diabetic condition?
Please e-mail replies to thejon @ jonsplace.org after taking out the spaces in the address. I'd appreciate it. My sick family member has developed multiple health problems and doesn't want to take medication, so any real life experiences I can give him (I won't use your names) may help convince him that this test is valid - or not. Thanks, Jon.
Tom S, February 19, 2007 - Hi all, The 14th was my Biv pacemaker/ICD device optimization and other than the uncomfortable pressure on the old ribs caused by the echocardiogram transducer I slept through a lot of it. The purpose of the optimization is just that - to make the heart pump the optimum amount of blood by adjusting the settings on the device.
To achieve that goal, a donut-shaped pick-up device is placed and taped over the pacemaker for the purpose of two way communication with the device. For the technophobes in the crowd, suffice it to say the Biv pacer/ICD is a complex little computer in your chest that can regulate your heart rate.
While one technician monitors and changes the device settings, the other is busy working with the ultrasonic transducer that "paints" a motion picture of the internal workings of the beating human heart on a computer monitor. It is a whole lot more complex than that, but the tech who is busy with the pictures is taking dozens of measurements and watching the ejection of the blood through the various chambers of the heart to determine which is the most effective setting for the device.
It turned out they had some problems determining the optimal setting for me because I ahve been in atrial fibrillation since last July, something the device implanted in my chest informed them of. It even told them the date, hour and minute the fibrillation started. By the time we were through, I had one cardiologist, a echocardiogram tech, a pacemaker tech and her supervisor all playing a guessing game as to what was the best setting for me. At one point I offered them a coin to flip when they had narrowed it down to two choices.
They did tell me before I left that if it makes me feel better they definitely want to know and if I feel worse to call them immediately. So far I can't tell the difference. firstname.lastname@example.org
Bev T, February 19, 2007 - Hi All, I need your input. I'm having about 27,000 extra pre-ventricular beats in a 24 hour period, per a Holter monitor test. My electrophysiologist and cardiologist agree that I should go on sotalol/Betapace. They are putting me in the hospital on February 26 to titrate me up on it. I've refused the drug in the past because it is such a dangerous drug.
Is there anyone out there who could give me an idea of how you've done on this drug? I'd sure appreciate hearing about your experiences. Thanks so much. Bev. email@example.com
Jacky B's February 19 reply to Kathy B's February 2, 2007 - Hi, I went for a second opinion today. Great doctor, she spent an hour with me answering question and checking over my records. Her first recommendation was that I have an echo that will show dyssynchrony (as you said Jon! - I took the info about it with me) before I considered the CRT. Her recommendations were no CRT but an ICD! She thought this was important. I shall follow this up when I have found a local cardiologist in whom I have confidence. firstname.lastname@example.org
Mary C, February 19, 2007 - Hello everyone, I had breast surgery 02/13/2007. It went great. I had a knowlegable anesthesiologist who knew about CHF and sleep apnea. I prearranged with breast surgeon. Now, I'm back on my diet of poultry, fish and veggies. I think I was just stressing, so the comfort foods are gone. I should stop calling them comfort food since they make me uncomfortable in my gut, heart and consience. My results for breast cancer were negative - thank you, Jesus.
Note to Jon: As soon as I pay some of my health bills I will be sending money for the speech thingy. You deserve a break, Jon. email@example.com
Jon's note: It's great to hear that your cancer results came up clean! Thank you for any donation, Mary. We currently aren't even close to being able to buy the software, although donations have covered the link checking service, which started yesterday, and it is critical to the site's success so huge thanks to all who donate!
Chuck F, February 19, 2007 - Hi all, Has anyone read any research on the best place for someone with heart failure to live? I am approaching 10 years now with heart failure and am doing fairly well. I have been fortunate enough that my wife has gone back to college and will graduate in a year and we are considering relocating where the best climate is for patients with heart failure. Thanks. firstname.lastname@example.org
Cheryl A, February 20, 2007 - Hi all , I just wanted to let you all know I went back to CCF hospital to have my displaced lead on my ICD repaired last Friday and so far things have gone very well. The attention, care, and communication I received this time were phenomenal. As one who has had some horrible ecperiences at other places in the country, I would recommend the trip there to anyone. email@example.com
Mary C's February 20 reply to Nancy P's February 14, 2007 - Hi Nancy, Read The Manual. Every blue word is a link. Angiograms are scary but let me tell you, not having one can be scarier. It gives the doctor information that could save your life, maybe even save your ability to walk, talk or think. Personally I don't mind dying since I know I am going to heaven but I don't want to linger. That is why I take the test, take the meds and everything else that helps me not lose ground.
Calm down, take some deep breaths and know God loves you. He has plans to prosper you and not harm you. My mother in law has had two quadruple bypasses and she is fine. She also has had several caths. If your discomfort is because of your doctor, get a second opinion, and than a third until you feel capable of doing the right thing.
If they do a cath now, they may be able to do an angioplasty and smash the blockage to the sides, and stent them but if you have an MI you will have open heart. The choice is yours. Love and peace to your heart. Freedom. firstname.lastname@example.org
Jon, February 21, 2007 - Hi everyone, Thanks to all who sent me their experiences with diabetes and the A1C test. It helped more than you know. A special thanks to Jack D for calling me with very detailed information, which really convinced my family members that this is a survivable and improveable condition! Jon.
Jon, February 23, 2007 - Hi all, Sorry for the delay. My eye exam wore my eyes out so much I couldn't focus on the monitor long enough to get anything done. I've never even had some of the tests this guy ran on me. There was no evasion in him - straight up all the way. For once a specialist found nothing new wrong with me! My eyes are fine. The swelling in my right eye is probably either fibromyalgia or lupus. Strange that this is good news but it actually is. Jon.
Giorg's February 23 reply to Bev T's February 19, 2007 - Hi Bev, I have been on sotalol for 2 years and a half (coming from carvedilol/Coreg). Where did you read that is so dangerous? For sure it is lighter then Cordarone/amiodarone. It is quite difficult to tolerate though, especially for people with DCM and CHF like us. I had to adjust dosage many times but then I found a balance. It worked well for my arrhythmias (V-tach, PVCs, bigeminy) but I have to say that I am on the heart transplant list now.
Some cardiologists I met believe that if I had continued with Coreg maybe my heart would have lasted a bit longer. However, many in my family got to heart transplant - it is in my DNA so drugs in my case could only slow down the evolution and make my life a little bit better (like sotalol that did reduce my PVCs). If you need more information, write me. email@example.com
Lynda Y's February 23 reply to Chuck F's February 19, 2007 - Hi Chuck, Well, I'm not exactly sure whether any studies have been done to determine the best place for someone with heart failure to live, but you can at least eliminate the less desirable places. Heart failure is affected adversely by high elevation, so certain states would probably not be as "heart failure friendly" due to their high elevation, such as Colorado, Arizona, Nevada, New Mexico, Utah, and Wyoming. Of course these states are beautiful and have much to offer, and I'm sure there are many heart failure patients who live in these places and are doing well. However if you are specifically looking for a location that would be better for heart failure patients, it would make sense to look for a state with a lower elevation.
Other factors such as humidity also affect many heart failure patients, so while Louisiana and Florida may have an optimal elevation, the humidity in the South would be less desirable. I'd think the best states may be one with a lower elevation, not too humid, and with fairly mild winters. I would also want to live in or near a larger city that has excellent health care facilities.
So your best bet might be to look through The Archives from this site for posters' references of excellent cardiac facilities, that are in a state that also meets the most desirable climate and elevation criteria. firstname.lastname@example.org
Tom S' February 23 reply to Chuck F's February 19, 2007 - Hi Chuck, What is best geographic location for CHFers? I would say near a really good hospital that has all the best cardio doctors and equipment to handle your condition. email@example.com
Tunny G's February 23 reply to Chuck F's February 19, 2007 - Hi, This may sound a little discouraging because of the name but several years ago I was in a discussion on the best place for someone with heart failure to live in the world and it was determined to be the Dead Sea. I can't remember the reason for this but breathing is easier. I am not sure if you are wanting to move out of the continental United States to another part of the world but if you were not aware of this, you are now. Thanks Jon, for your endless efforts into maintaining and keeping such a great site going. firstname.lastname@example.org
Henry T, February 23, 2007 - Hi all, In January I switched health plans due to a move. I am now covered by Blue Cross/Blue Shield and while my transition to new doctors has been seamless, I am having a royal battle with my drug coverage through Express Scripts. Under my old plan I had been on Coreg since my initial diagnosis of CHF and cardiomyopathy in 1998. Express Scripts has seemed reluctant to fill my doc's scrip for Coreg.
Here's my question: Has anyone else had problems with this particular drug plan and if so, what were the magic words that seemed to get results? I've been dealing with this issue since January 19 and am now paying for Coreg out of pocket. I'm not a conspiracy theorist but I can't help wonder - since the patent for Coreg expires next month if the company isn't deliberately stalling so they can fill the presciption with a generic when one becomes available. Henry. email@example.com
Jon's note: Express Scripts is notorious for poor service in general.
Linda, February 25, 2007 - Hi everyone, I am Jon's wife. A donor asked which way we prefer to receive donations for CHFpatients.com. Please share first with everyone my thanks for the thoughtfulness and generosity of those who contribute to support the needs of the web site. In answer to the question, even though we pay a very small fee for each donation received through Paypal.com, it is a somewhat easier way for me to process the donations, and takes less time.However, for those who prefer to mail their donations, those donations are no less appreciated.
I also want to tell everyone that we are about to celebrate our 25th wedding anniversary this next week, and how much I love you, and how grateful I am for you in my life (and you better print this, hubby!). Linda. firstname.lastname@example.org
Jon's note: If a man says he's boss at home, watch him - he'll lie about other things too!
Mary C's February 25 reply to Henry T's February 23, 2007 - Hi Henry, Get your doctor to use the words, "medically necessary" with a letter from your docs to prove it. Good luck, Mary. MHCarrs@aol.com
Donna V, February 25, 2007 - Hi all, This has nothing to do directly with CHF but I got the new vaccine for shingles this week. It is now being recommended for all people over 60 years of age. There was a delay while my PCP's office determined whether or not my insurance would pay. I think that without insurance or Medicare/Disability, it runs around 170 dollars US. It turned out that my insurance would pay. I really did not care because I wanted it for a much lesser risk of any other virus as I could get. The older I get, the less I want to think about the possibility of awful shingles down the road. My only reaction to the vaccine was a red circle at the injection site. I did not discuss it with my cardiologist. Donna V. email@example.com
Robin W, February 25, 2007 - Hi everyone, Has anyone lived in or been to New York City with CHF? I'm a 51 year old female going to spend 10 days there visiting my daughter who just moved to upper Manhattan. I need advice on how to manage in a "walking" city with severe heart failure and very limited funds. I really want to do some thing independently while she's at work, but don't know how to manage.
I walk briskly daily for about 30 minutes (not carrying anything) and can be "up and about" for about 4 to 5 hours before I have to stop for the day, longer if I'm doing things while sitting, shorter if I'm moving around the entire time. My daughter lives about 1-1/2 hours from midtown Manhattan by bus, 40 minutes by subway, both of which are a 15 minute walk from her apartment. Help! Thanks. firstname.lastname@example.org
Shirley G, February 25, 2007 - Hi, This is my first post but I have learned a lot from this site. I have had CHF since January of 2000. I just got out of the hospital as I had bronchitis really bad. My doctor has given me some new medications and I would like your opinion and experiences. For high blood pressure he has prescribed 3 different medications: Coreg at 25mg twice a day, Clonidin at 0.1mg twice a day and lisinophil at 20mg one tablet every 12 hours.
This seems like a lot of blood pressure medicines to me. I will check with my doctor but was wondering what you think. Actually, my blood sugar would go up before a test due to stress and then after the test, it would go back down. Normally, without medication it is around 120/66 but it does vary. Thanks for any help. email@example.com
Jon's note: Coreg and lisinopril are not given to CHFers just for blood pressure. Be sure to go to www.chfpatients.com/ and read the ACE inhibitor page and the beta-blocker pages.
Ben B's February 27 reply to Robin W's February 25, 2007 - Hi Robin, I went to New York several times with various degrees of CHF. In my opinion, there are few easier places to get around. Manhattan is very small and the public transportation is great. I went from Queens to Brooklyn and everywhere on Manhattan using the subways. The main problem is making sure you don't have to climb excessive stairs. I think a weeklong pass was something like 20 dollars. Also, almost anywhere you are is close to a lot of stuff. I was on the Upper West Side, within easy walking distance of Central Park, the Dakota, several museums, and about 100 interesting restaurants.
I am curious why you say you have severe CHF? Is this because of EF? Frankly, I am labeled class one or 2 with mild DCM and I can't walk briskly for much more than 30 minutes. Maybe I'm just generally out of shape. firstname.lastname@example.org
Tom S' February 27 reply to Robin W's February 25, 2007 - Hi Robin, Having worked and lived in and around New York City I thought this would be an easy question to answer. It sounds to me in some ways you have already answered your own question. If you are planning to use to the subway system to get into town - which I would recommend - you are already in a system that can get you almost anyplace you need to go in and around the system. Macy's, for example, has it's own station and so does Yankee stadium. Be careful though because it can be confusing and I stopped using the subways back a few years ago because the train schedules were changed from every 5 minutes for some lines to every 20 minutes. It was then that I discovered cabs and at that time they weren't all that expensive, although at times gridlock made walking faster.
My office was at 23rd and Broadway at the Washington Square Park substation so it was an easy commute. I never rode a bus in the 16 years I worked in New York City so perhaps someone else can fill you in on those. email@example.com
William B, February 27, 2007 - Hi, I am now considered a class 3 CHF patient. I had a heart attack in 2005 and I have had a biventricular pacer/ICD implant which has helped me quite a bit. My problem is my breathing. I get winded after walking some 50 or 80 feet. I have partial fluid occlusion in my left lung that has jelled. I have recently had my Coreg upgraded to my target of 25mg twice a day. I tolerated the previous upgrade to 12.5mg well.
My problem is that after a week of the 25mg dose, my breathing has been more labored, my fatigue has increased, and I have gained two pounds and become a bit more lethargic. I watch my weight carefully. I was wondering if anyone here had similar experiences and if so did they pass or continue, particularly the increased breathing problem. I will be seeing my cardiologist in about a week. Any comments? Budjoy4@aol.com
Jon's note: Welcome to the Coreg club. This usually passes. See chfpatients.com/coreg.htm.
Karen K's February 27 reply to Shirley G's February 25, 2007 - Hi Shirley, I was interested when I saw the medication clonidine and looked it up on rxlist.com. From what I can tell, it is given for low blood pressure. I could be wrong. I'm wondering if this was given to you to counter the effects of Coreg which does lower blood pressure, sometimes quite low when you first start taking it. Karen K. firstname.lastname@example.org
David E, February 27, 2007 - Hi all, I just found this site a few days ago, and it is incredibly informative. I thank the creator of it. My story is relatively simple and I'm just trying to find out what I might be in for. I had a VSD repair when I was three and then didn't have any real trouble with my heart until this past May.
I went to the ER after 2 weeks of getting short of breath just going up the stairs. I was diagnosed with a 2 to 1 block. I had a pacemaker put in and got much better. I then had a nuclear stress test that said I had some sort of blockage, which led to a heart catherization that showed no blockage but that my ejection fraction was between 35 and 40%. I was put on Coreg and lisinopril.
Then in August I began to get tired again and the day before Labor Day I went to the ER and was diagnosed with congestive heart failure and restrictive lung disease. My EF was now 35%. I now have a pacemaker/ICD. Since then I have been on a lot of meds and my most recent EF was placed between 30 and 35%. Everything I've read says that the average life span with CHF is around 5 years. I just want to know what to expect. Thank you again for this site. email@example.com
Carrie I, February 27, 2007 - Hi, I am a 25 year old with CHF. I have had CHF since June of 2000. For the last few years I haven't had much trouble. For the last few months though, I have been noticing that after I go for a walk I feel very weak. It's like a weak feeling you get when you haven't eaten enough food. It goes away but seems to happen after exercising. I'm a little bit scared and not sure if anyone else has experienced this kind of problem. I have phoned the cardiac nurse and will be talking to her soon. Any ideas? firstname.lastname@example.org
Elaine F's February 27 reply to Linda's February 25, 2007 - Hey Linda, Nice to meet you. I've been coming to Jon's site since March of 1999, with CHF diagnosed in September of 1998. Since then, I've gone through breast cancer with surgery, chemo and radiation. Then I got my BiV pacer. I actually went back to work for almost 3 years before my cancer recurrence in May of 2005 with bone, liver and lung involvement. Then I got to get a permanent port implanted and have been on some sort of chemo ever since.
With the info I learned on this site at the very beginning of my CHF, which at that time was cutting edge, I am still looking forward to many more years around here. I've got great docs, good insurance, and the grace of God. We are usually broke and just getting by, but money is not important when one has three wonderful daughters. My husband and I are going to have our 20th anniversary in early March! Thank you so much for sharing your hubby with us. Many more to us all! Peace, love, faith. Elaine Farmer. email@example.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 Jon C.