David W 10-16 are tests different in results?
Mary C's 10-16 reply to John D's 10-13 prognosis, CHF specialist
Marcia H's 10-16 reply to Susan's 10-12 pseudo aneurysm? and a question
Michelle H 10-16 seek experiences with post-PPCM pregnancy
Debra S 10-16 seeking the Linda who contacted me
Jon 10-17 seek experiences with fibromyalgia and rash
William B 10-17 BiV pacers, coping, this site
Doug H's 10-17 reply to Jon's 10-13 mortality, prognosis, in heart failure
Kim E 10-17 seek PPCM experiences, is depression normal?
Cindy W 10-17 how do I deal with my mom's CHF?
Roger H 10-17 greatly improved CPAP gear
Tony M 10-19 seek generic Toprol-XL availability
Giorg 10-19 heart dilation, how you feel, EF questions
Tom S' 10-19 reply to Roger H's 10-17 CPAP, sleep problems, oxygen at night
John D 10-19 longevity info was great, thanks for e-mails
Scott B's 10-19 reply to Kim E's 10-17 your situation & depression
Tom S' 10-20 reply to John D's 10-19 how long we live
Dorothy M's 10-20 reply to Sara K's 10-12 considering heart transplant experience
Jon 10-23 weekend follies
Chris 10-23 how can I help my family?
Roger H's 10-23 reply to Tom S' 10-19 eyeballs, sleep, CPAP and BiPap
Roger H's 10-23 reply to John D's 10-19 learning about heart failure
Mary C's 10-23 reply to Kim E's 10-19 coping with depression and chronic illness
Jennifer G's 10-23 reply to Kim E's 10-19 and to Michelle - a resource for mothers with heart failure
Joe H 10-23 introduction, doing much better
David W, October 16, 2006 - Hi all, I'm new to all of this, so I am having trouble wrapping my head around test results and what they mean. An echocardiagram in my doctor's office indicated an 25% EF and a diagnosis of cardiomyopathy. Five weeks later, I had an angiogram (cath), which included an angioplasty and a stent placement in one blocked artery.
The thing that has me puzzled is that the cardiologist said the "pressure" he measured inside of my heart was normal. I have a follow-up visit with my cardiologist in two weeks and I'll learn more then. But has anyone else experienced such different results from two tests? Is the angiogram more definitive than the echocardiagram? email@example.com
Mary C's October 16 reply to John D's October 13, 2006 - Hi John, I now have a CHF specialist at UCSF Medical Center. He said if I take good care of myself and take my meds, I will be fine. This includes diet, rest and exercise. He said if I don't take care of myself he will need to see me in his office once every month.
Now he said it would take me ten years to get to the point of such illness I would need to see him every month. So he just blasted the 5 year thing for me. That was established before medicine and medical care is at the point it is now. Also, my regular cardiologists (3) that I saw in town were very negative. The one from UCSF builds me up and is such a possitive influence. I believe in kicking a doctor in the pants who robs any patient of hope. So do like Jon said, and get a CHF specialist. The quality of care is miraculous. firstname.lastname@example.org
Marcia H's October 16 reply to Susan's October 12, 2006 - Hi, I have had two pseudo aneurysms after angioplasty and wonder if Susan could have one? Also, I have been having a lot of bigeminy and the doc said not to worry since my EF was 60% in June that I probably would never arrest from it. What do you think? email@example.com
Michelle H, October 16, 2006 - Hi, I had CHF last summer due to the side effects of chemotherapy. My current ejection fraction is 35%. I am diagnosed with dilated cardiomyopathy. I have just found out that I am pregnant. The doctors are going to do some research for me but I wanted to find someone who has been in the same situation. They do not know if my heart will handle it or not. Has anyone had a sucessful pregnancy or know of someone who has? Please contact me! firstname.lastname@example.org
Debra S, October 16, 2006 - Hi all, Did someone by the name of Linda contact me? If so, my husband deleted it. Please contact me again. Thank you, Debra. email@example.com
Jon, October 17, 2006 - Hi everyone, I saw my rheumatologist today and he seems very on the ball, working me through various therapies a bit more slowly than usual because I have had some unique side effects that apparently have never been reported before but which are well documented and even visible at times. I am looking for anyone with fibromyalgia who has had problems with a rash of any kind. Please e-mail me. Thanks, Jon.
William B, October 17, 2006 - Hi all, I have a biventricular pacemaker with ICD. I also take Diovan at 40mg), Coreg at 6.25mg twice a day), Demedex, and Coq10 at 50mg twice a day. The reason I take a low dose of Coreg is because my blood pressure is quite low and could not stand a higher "target" dose. I had the biventricular device implanted February 1st. I had to have the procedure done twice because the surgeon, after three hours of work, could not get the lead wire into my ventricle -not an easy job. I had it done again and they were able to implant it.
Unlike the other 2 leads, the third lead ends up in a vein and can be subject to movement, which happened to me. The technicians just turned up the juice a bit and it returned to normal. I believe that I am one of those who have benefited greatly from this procedure. It seems the worse you are the better it works. I was diagnosed with class 4 heart failure and was told I needed a heart transplant. Getting a heart transplant is no easy matter. There are very serious requirements that one must have in place as there are only about 3,500 heart transplants done worldwide and some 60,000 people waiting for one.
I was not eligible for a transplant, however my quality of life has improved greatly since my biventricular implant. Before I had the procedure I could not breathe and even to walk six steps would send me into a breathing frenzy. I still lead a modified life and who knows what tomorrow holds. However, having spent 5 years as a Navy pilot, discipline is a way of life. I watch my diet, weight, exercise for one hour each day and try to get appropriate sleep. Most of all I keep a positive attitude, which I suppose is my nature. Even class 4 heart failure patients can have quality in their lives if they have discipline, a positive outlook, and most of all, a good cardiologist. I follow Jon's lead and supply a copy of questions to be asked at each meeting.
I would also ask that you contribute to this site. It is the best available and Jon needs funds to keep it going. Our check was mailed today. Have a great day. Budjoy4@aol.com
Doug H's October 17 reply to Jon's October 13, 2006 - Hi all, Jon is right - prognosis is much better than many docs or literature will lead you to believe. As Jon said, that information is based on older data from the pre beta-blocker/ACE inhibitor years. Current stats from a study in Italy show an average survival rate greater than 80% after 4 years. As with all statistical information, there are many variables to consider such as pre-existing conditions in a person.
The new methods of treatment and greater understanding of the condition has contributed to that increase in longevity. However, according to an NIH sponsored workshop in February of 2006, 45% of all heart transplants are due to some form of DCM. The good news, with the percent that high, the research activity in this field is growing. firstname.lastname@example.org
Kim E, October 17, 2006 - Hi all, I am new to all of this. I had pre-eclampsia during my pregnancy (hypertension) and delivered a healthy baby boy on August 31st. I hemorrhaged during delivery, requiring a blood transfusion. I was released from the hospital still very weak. Two days later I couldn't breathe if I was lying down and I couldn't even sit up without getting extremely winded. I went to the emergency room and after an echo I was told that I had congestive heart failure. I and my 6 day old son and husband stayed in the cardiology unit where I received another 3 units of blood. I was released 5 days later and it has now been 4 weeks and I am getting stronger every day.
I was told that it is fairly common to get what is referred to as peripartum cardiomyopathy. Has anyone else experienced this? Also, am I just emotional, or is it normal to be depressed after being diagnosed? My family keeps blaming my crying on hormones, but truthfully I feel like I am being robbed of my future. email@example.com
Jon's note: It's not universal, but I think at least half of CHFers get depressed after diagnosis.
Cindy W, October 17, 2006 - Hi, My mother is 85 years old, with brand new CHF, a-fib, leaking valves, etc. I know this is bad, but please give me some idea how to deal with what is probably her time approaching. I am very sad. firstname.lastname@example.org
Roger H, October 17, 2006 - Hi, We have been in the past talking of the bi-pap and CPAP machines and masks. It just seemed lately that when I put the mask on, it seemed to shut down my breathing. I thought of trying the nasal pillows and got the new headgear for that yesterday. I got the Res Med Mirage nasal pillow system. The people told me that was well received by all. It is the cats' meow! (just my opinion) I wish I would have done this years earlier. I can breathe and sleep much better with this system. email@example.com
Tony M, October 19, 2006 - Hello, I am sure I read that Toprol XL was going to be a generic drug soon and I haven't found it yet at the drugstores in my area. The drug stores acknowlege they have heard about it going generic but so far no one has the generic XL. Have any of you found a generic Toprol XL yet? It would save me some money and I need it for other prescriptions so I need any break I can get. Tony M. firstname.lastname@example.org
Jon's note: Hi Tony, According to FDA CDER, 25mg metoprolol succinate is the now-approved generic for Toprol XL. Higher dose pills are expected to go generic soon. I don't know exactly where it is available right now.
Giorg, October 19, 2006 - Hi everyone, I just want to share the following experience of mine. Much more then on EF, "how you feel" with DCM is linked to heart pump (that is, EF multiplied by diastolic volume of heart, multiplied by beats per minute). In my particular form of DCM, my EF is not so bad (around 30%) but diastolic volume of heart is low, because my heart did not dilate much in response to DCM. So heart pump is low compared to a patients with the same DCM but a bigger heart. In fact not always a dilated heart is bad. In my case is very bad that the heart is just mildly dilated. My heart is not dilated but very stiff, because systolic volume is high and diastolic volume is not enough high. Do you guys agree? email@example.com
Tom S' October 19 reply to Roger H's October 17, 2006 - Hi Roger, I was put on my CPAP machine by the VA (Veterans Administration) two years ago and the unit came with the nasal pillows. Unfortunately, they blew air out of my eyeballs so I didn't use the CPAP machine for long. It was more like a personal torture device than a medical necessity. Now I am on supplemental oxygen and I wear it all night and feel really good in the morning.
I sometimes wonder if supplemental oxygen would not be better in some cases. My wife has given up her CPAP machine after a year after struggling with both nasal pillows and face masks. firstname.lastname@example.org
Jon's note: Hi Tom, If you show Cheynes-Stokes respiration during a sleep study, often oxygen is better than CPAP. In fact, my own sleep breathing is so weird that I'm having another study while the doc (board certified) tries to figure out which one would be better for me.
John D, October 19, 2006 - Thanks, Jon and Mary, for the encouragement and the Url to longevity information, especially Framingham Heart Study info. I figure I had CHF for three years before diagnosis, so when the doc said five years at best, I wondered if I would last long enough for the drive home; what a horrible state of mind. I'm learning more and more each day, thanks for this site and for all the personal e-mails. John D. BoulderJD@gmail.com
Scott B's October 19 reply to Kim E's October 17, 2006 - Hi Kim, It's totally normal that you feel depressed right now. You have been through the mill! Firstly, the birth of a healthy child is supposed to be one of the happiest times of your life. Then, you get a blood transfusion, which means your iron will be so low you can hardly look after your own baby. You must have been so fatigued. You have received a lot of blood, which can create its own set of concerns. In a lot of cases, the breast milk does not come in properly because of the iron deficiency.
The second blow is finding out you have CHF. Has your cardiologist given you an opinion on whether your heart will return to normal funtion? Finally, you have a newborn baby who has likely not given you more than two hours of sleep at a time. If someone was waking me up every two hours, I would feel depressed too. Then there are the normal postpartem considerations.
If there was ever a scenerio for depression, I think this is it! On the positive side, there is a great chance that things will get back to normal slowly as time goes by. It will get easier and easier, but progress is slow. It sounds like you have a good support group there to help (along with a new baby) so there are things to be happy about. Scott B. email@example.com
Tom S' October 20 reply to John D's October 19, 2006 - Hi John, Heck, I'm an 11 year survivor who was given 3 days, then a month to live. Finally the doctors said no more than a year, then gave me another reprieve and added another two years. Finally they gave up and allowed nature and God to take their course and stopped predicting when I'll make that final roll call and go down for the final dirt nap.
I guess with four teens at home I have little time to allow the grim reaper to enter my life and I have actually seen less prepared and much "healthier" people take their final gasps much to everyones shock and amazement. Forget about the statistics - you will die when it's your time and not a second before. Enjoy the time you have and stop counting. firstname.lastname@example.org
Dorothy M's October 20 reply to Sara K's October 12, 2006 - Hi Sara, I wanted to share my CHF experience. In 2001, at age 54, I was diagnosed with CHF and my cardiologist determined my ejection fraction was about 24%. He urged that I have a heart transplant as soon as possible and really was displeased when I told him that was at the very bottom of my list!
I am one of the lucky people whose body responded very favorably to lisinopril at 5 mg daily and Coreg at 12.5 mg twice daily. After one year of this regimen, my EF was about 54% and I felt - and still feel - great! I can't tell you how very thankful I am to Jon that he provides this wonderful site! I have learned that I should continue this regimen of meds for the rest of my life. I am never short of breath and exercise 8 to 10 hours per week.
Please learn all you can before agreeing to a heart transplant. email@example.com
Jon, October 23, 2006 - Hi everyone, I really overdid it Friday and Saturday, trying to get things caught up around the house and yard, so naturally I paid for it all weekend. No posts up was the result. You'd think I'd learn to take my own advice and know when to back off, wouldn't you? <g> Jon.
Kris S, October 23, 2006 - Hi, I am really concerned about how to help my dad deal with my mom. She was diagnosed with CHF in 1995. Two weeks ago, she was placed in the hospital due to edema and difficulty breathing. She is still in the hospital with no reduction in edema, needing oxygen 24 hours a day with minimal relief, unable to walk beyond 4 feet without having to stop, etc. The doctors are not talking to the family and my dad is from a generation when you did not ask doctors questions. How do I know approximately how much time I have with her? How can I help my family? firstname.lastname@example.org
Jon's note: I am sure you'll get more suggestions, but I'd start by having her sign a HIPPA release so you can talk directly with her doctors.
Roger H's October 23 reply to Tom S' October 19, 2006 - Hi Tom, I had the eyeball problem too. I had lost a few pounds at the time and that changed the need to get the pressures changed. Amazing how just a few pounds made a big difference. I went from 15 and 10 setting to a 11 and 8, and all was well. I followed up with a sleep study. I really don't know why but I started out with a CPAP and a month later I was put on a Bipap and have been for the last 7 or 8 years. email@example.com
Roger H's October 23 reply to John D's October 19, 2006 - Hi John, At the time of my second bypass and the beginning of CHF, my cardologist I had at the time knew very little of CHF because he told me I could go back to eating my normal way in 6 months, but also suggested I might not make it past 3 years! No thanks go out to him! I learned a lot on the Internet - mainly from Jon and all the fine people that hang out here on this site! firstname.lastname@example.org
Mary C's October 23 reply to Kim E's October 17, 2006 - Hi Kim, I am sorry you are having such a awful time. As for myself, I got very emotional when I found out last December of 2005. I really got depressed, then I went on beta-blockers and it got worse. Are you on a beta-blocker? If so, you may want to talk to your doctor about an antidepressant to help you get over this lump.
I think one day I realized I have a chronic health problem that for a certain point I can't fight. On the other hand I can chose how I react to bad news. Life is short so I decided to stop worrying about the chronic issues and just enjoy my life to its fullest, whatever that may mean to me. I am back in college, I am the parent of teenagers and I have a lot to give people. I have chosen to take care of myself so I am changing how I eat and I am in cardiac rehab. I am happy.
It is normal to go through an adjustment period. However, when that adjustment period is taking too long, it is time to ask for help. Give yourself time to adjust. email@example.com
Jennifer G's October 23 reply to Kim E's October 17, 2006 - Hi Kim and Michelle H, I read your posts and e-mailed you personally, but I wanted to share a web site that is primarily for mothers with peripartum cardiomyopathy, but there are a few of us on there with other forms of cardiomyopathy as well. The website is www.amothersheart.org.
Many mothers with this condition have gone on to have successful subsequent pregnancies and live healthy and productive lives. There are women on there that have shared your experience and will give you lots of love and support. I believe those of us who are young mothers with this scary diagnosis and so much to live for, need the love and support of other young women who have been there and truly understand. God bless you, girls, and hang in there. Remember that there is hope. firstname.lastname@example.org
Joe H, October 23, 2006 - Hello Jon and everyone, First of all, thanks to Jon for all his help with this site; God bless you. I first got nonischemic left venticular cardiomopathy and CHF to boot. I'm a 100% disabled Vietnam veteran because of my agent orange exposure, with prostate cancer but I'm okay - God is good.
Three years ago I had an EF of 14%. I took Coreg at 25mg twice a day, Diovan at 160mg, Aldactone (spironolactone) at 25mg twice a day, Lasix at 25mg (2 tablets) twice a day, and kalcor at 20mg twice a day. Three years later my EF is 38% and I feel good, better than I have in a long time. I feel like I've kicked this disease but I know I haven't. I was close to getting an ICD but I didn't fit the criteria for it. I'm very aware of the sudden death thing that often goes with heart failure, but my Lord helps me through this.
Any Vietnam veterans in the same boat, get back to me. Anyone else, I just got a computer so this is all new to mr. Thanks again Jon for all you've done. God be with you all. email@example.com
Jam, October 24, 2006 - Hello, I was just watching the news and there was a story on about an implant that has been shown to help make a heart healthier. Does anyone know the name of the device? firstname.lastname@example.org
Marty C, October 24, 2006 - Hi all, well, after over 2 years of being stuck at 35% EF, my docs were saying the LBBB was just preventing improvement. Then today I had an echo with an estimated 45% EF and internal heart pressures were normal! This is without giving in to going to the CRT pacer. Woohoo! So much for the naysayers who told me that if I was going to improve, it would be within one year or not at all.
My doctor was so excited to see this he actually e-mailed me to let me know within hours of the echo at the hospital. I've eaten a lot of Coreg, Altace and Inspra, along with L-arginine, creatine, taurine, and CoQ10 in the past two years. Who's to say which one helped most? There was also one other factor: I have a family that prays for me every day - also proven to help! Never lose hope, just stay with the program, take your meds, and a little prayer can't hurt! I pray the same kind of success for each of you. Marty. email@example.com
Debbie B's October 24 reply to Joe H's October 23, 2006 - Hi Joe, My mom is the one with the CHF issues, she will be getting a biventricular pacemaker on November 8th. My stepdad is 60 and also disabled due to agent orange exposure. He has a blood disorder called MDS and it has turned leukemic. He has been ill eleven years with various illnesses we believe to have been caused by his exposure. I am so glad your EF is much better, thanks for your post. Debbie. firstname.lastname@example.org
Debra S' October 24 reply to Mary C's October 23, 2006 - Hello Mary, I too am very depressed, from Coreg. Which beta blocker were, or are, you on? The antidepressants also bother me. Are you still on a beta-blocker and which antidepressant? Thank you for any advice you may have. Debra. email@example.com
Jemima, October 24, 2006 - Hi everyone, I'm new here but I've been reading some posts recently. My dad has CHF and is currently undergoing Primacor IV therapy. His cardiologist has recommended hospice care. The therapy seems to be having good results so far. However, I'm afraid to take him to a follow-up with his cardiologist because he's always so negative and brings my dad's spirits down. Every time he sees my dad, he leaves depressed, gets home and starts having panic attacks, then ends up back in the emergency room. I know he has a serious physical illness, but I also think a lot of it is mental. He gets panic attacks and is afraid of dying. I can't seem to find a CHF specialist in Palm Beach County, Florida. Can someone help? Thank you. firstname.lastname@example.org
Jimmie R, October 24, 2006 - Hi all, This is just an update on a good thing which I enjoy giving as well as receiving at times. I got my pacemaker in July. I was a non-responder and had few improvements. After a check they sent me to an optimization clinic and tested, then made changes in my implant for over a hour. I am not sure of the changes that were made but 2 days later I had 10 times the energy and a clear brain for the first time in 2 years. I am improving daily now. I had this done in Grand Rapids, Michigan. This is something else to try and for me, it worked. God bless you all. Jimmie R. email@example.com
Tom K, October 24, 2006 - Hi, Three years ago my EF was 10%. I couldn't walk or climb steps, but through meds, diet, exercise, and the good Lord, my EF is back to normal and I bike on average 10 to 15 miles a day. I hope this helps others who were in my position. Tom K. firstname.lastname@example.org
Jon, October 26, 2006 - Hi, this is for everyone reading. I was sitting here yesterday, too tired to touch the keyboard and feeling sorry for myself (yeah, I do it too), and my mind clicked on. Please note that this is not a request for donations. I thought about how many times I asked and people gave, often only five dollars but it was all they could afford and maybe more. The computer and keyboard that make this all possible have been bought with those donations, as have the necessities of life. I make 9 to 12,000 dollars per year, spend an hour a day sorting out the spam, my wife and I don't take vacations, we have basic cable (20 channels), we eat out maybe twice a month, and my wife's car is at 200,000 miles.
Yet I am truly blessed. This message board gives me more than it takes from me. When I had a new problem with fibromyalgia, I had people e-mailing me who also have both CHF and the F-word (that's how I think of it). Again, the effort proved worthwhile not just to others, but to me. Every time I have asked, you have responded wonderfully. I sent a letter to all the medical practices who list CHF specialists here and of the 98 letters, only 3 produced any donation at all, one from my own doctor. It's frustrating.
Still, I sit here warm and dry with a vehicle to take me where I want to go, and talk to people all over the world, who educate and support me as often as I educate and support them. This is just a thank you to everyone, whether you ever donate or not. Maybe I need this site more than you do, I'm not sure. What I do know is that you have given as much as you have received. So thank you.
Please don't respond, and please do not donate anything because of this message. That is not my intent. Just, thanks. I have not gotten a single complaint about the intermittent posts due to my own illness. That's a measure of the quality of you, the readers and posters here. Where else would I get that kind of patience and understanding? It's as much in what is not said as in what is said.
I won't be getting all the posts caught up at one sitting but hope to do so before the day is out. Jon.
Mary C's October 26 reply to Debra S' October 24, 2006 - Hi Debra, I was on Toprol-XL. In the interim they figured out I couldn't take a beta-blocker because of asthma. As soon I went off it, my depression stopped. That depression was chemically aggravated. The other depression was hearing that I had a yet another chronic illness.
This board has helped me regain my control over my health care. Then that depression caused by the diagnosis and dealing with dingbat doctor was then lifted as I was educated by Jon's message board. My doctor was talking about Celexa. My sister takes it and has no side effects. I would rather put up with side effects than deal with depression. email@example.com
Jon's note: I take generic Celexa (citalopram) and like all drugs, it does have side effects, but the only one I have experienced applies only to men. It's not impotence, but something more frustrating, politely called climax disorder. <g>
Evelyn G's October 26 reply to Jon's October 23, 2006 - Hi Jon, Sometimes I think even though we know better, we just want to be normal. Evelyn G. firstname.lastname@example.org
Jon's note: How could we not? Then again, what's normal? Any thoughts, Jack? ;-)
Cindy W's October 26 reply to Jemima's October 24, 2006 - Hi Jemima, I am in almost the same situation with my mother, except her cardiologist glosses everything over, making my mom very hopeful. She is 85 though, and her senior care advisor tells me she would recommend hospice for her. It's hard - my mom doesn't think it's her time, but all else points to it. I am trying very hard to stay upbeat for her. email@example.com
Mo, October 26, 2006 - Hi all, I've been warned about the existence of this nice group of fellows on the web who share the same disease as I do. I wonder if we can exchange information on how to live a better life and keep the disease under control as long as it is possible. I will keep on snooping on the message board and probably I will be posting soon. In the meantime, hello everyone. Best regards, Mo from Italy. firstname.lastname@example.org
Paula J, October 26, 2006 - Hi all, My grandfather is 85 years old and recently he has been very sick. He has congestive heart failure, his kidneys are weak and he has fluid on his legs and hands, and some pneumonia. How can he deal with all that? What can be done? email@example.com
Joseph A, October 26, 2006 - Hi, Long time, no post, but I am very upset about being treated like a customer at the doc's office and I am looking for a new doc. I do have good insurance but this cancels out the idea of no pay. I am an inpatient (patient) and I would like a list to give to a new doc when he wants me to fill out the first visit survey. I have been treated for CHF for 5 years now and I have an ICD. What happened to being cared about by the doctor? Does a person have to look for a new doctor every so often, if a new doc is available? I would like some input for a questionnaire to give to a new doc. Like an I a person or a customer. Joseph A. firstname.lastname@example.org
Gloria's October 26 reply to Tom K's October 24, 2006 - Hello Tom, That is awesome news. Thank you for letting us all know. It does give us hope. Keep up the great work! God bless. Gloria. email@example.com
Jacky B, October 26, 2006 - Hi all, Man, am I ever depressed! I just had the results of my echo. My EF has dropped from 45 to 50% to 25 to 30% - the lowest it has ever been! Why would that happen when no meds have changed? I don't feel very different but have not felt as good the past two months. Jacky. firstname.lastname@example.org
Tom S' October 26 reply to Jon's October 26, 2006 - Hey Jon, You my friend contribute more than you will ever know. email@example.com
Jon's note: I shy away from posting stuff like this but I have an earned respect for Tom. Maybe the reason that respect took so long is because I think he's so much like me - or vice versa. <g>
Jon, October 29, 2006 - Hi everyone, Well, posts are late again, but this time I'm now caught up on my e-mail so it should be easier to keep up. It's been so long since I've been caught up on e-mail, whew! I also have quite a few mailings 80 percent done that I can now finish and send out. Jon.
Ben B's October 29 reply to Jacky B's October 26, 2006 - Hi Jacky, I wouldn't worry too much about these numbers. I believe they vary day to day. Did your doctor seem concerned? Were you expecting them to be lower from how you felt? How long have you had DCM? I have had it over 8 years and I no longer even ask for my EF numbers. They just don't seem to mean anything in my case.
My EF has gone from 10% to 45% and I have felt exactly the same except for the very beginning. I just had an echo and my doctor just basically told me, "looks pretty good, it's a little less than normal."I asked him if there was anything I needed to do and he said lose weight (which he knew from the scale, not the echo). I left it at that. firstname.lastname@example.org
Jacky B, October 29, 2006 - Hi all, Regarding Coreg, if you go to he Coreg web site and register for their newsletter, you will receive a coupon for one month's supply free! I just used mine and saved $120! So far I have not received any junk mail from them. Jacky. email@example.com
Jon's note: The web site address is www.coreg.com.
Ben B, October 29, 2006 - Hi, I have been having some concerns about my coronary areteries since a cath 3 years ago showed some small areas of plaque. My doctor is giving me a nuclear stress test. My question is for anyone who has recently had one: Do they usually run you through the standard Bruce protocol, or for us with cardiomyopathy do they use the modified Bruce? I can walk on a treadmill, but if I have to go uphill too much, it is going to be a short walk. firstname.lastname@example.org
Jon's note: It depends on the individual and the doctor's judgment. Ask your doctor for sure.
Ann L, October 29, 2006 - Hello, I sent a check tonight. I'd several times thought it time to send my contribution, then forgot. Tonight I sat down and wrote a note on the budget form. It was the note from a member that told me to pull out the checkbook and get-er-done. I'd say the site has helped me as much as my cardiologist has helped, but in a way that he cannot possible help. The spectrum of problems, personalities, suggestions, sharing - all by patients - is the thing I respond to. None of this would occur without Jon's contribution. email@example.com
Lori A, October 29, 2006 - Hi all, About the event monitor, the thing goes off by itself all the time, which concerned me. I called the cardio lab and at first they said it was probably being triggered by my movement. I know that's not the case though, since I can be sitting perfectly still and it just triggers.
Jon, you suggested I check with my doctor's office. I called them, wondering if the machine was working correctly. They said they'd look at the reports and call me back. They did not get back to me. Three weeks into the test, I called the doctor's office again. I was told that if they saw anything critical on the reports, they'd have called me.
So, I guess that whatever's triggering the machine is not terrible, but that the machine is working correctly. I'm still curious about whether anyone else has experienced anything like this. Thanks! firstname.lastname@example.org
Jon's note: Hi Lori, I hope others reply. All I can say is that I just fired a doctor (a dermatologist) because in my opinion, he was not listening adequately to me.
Todd B, October 29, 2006 - Hi, I'm new to this site. I have no edema in my feet and legs when I wake up in the morning and my weight indicates I am not retaining any fluid. By the afternoon my feet and legs are swollen. Is this normal? I take furosemide (40mg) every morning. Todd-Butler@msn.com
Jon's note: Factor in gravity (edema not so noticeable when prone can go to your lower limbs after being upright awhile), Lasix instead of torsemide, and diet to start.
Georgia W, October 29, 2006 - Hello all, I sent you a list of my conditions, which are many. I have an EF of 18%, 2 bypasses, 2 hospital visits for retaining fluid, a leaky valve, etc. You asked for a list of all my meds and doses, and I haven't heard anything. I know you are very busy and am not complaining. I am just despressed and scared. email@example.com
Jon's note: Hi Georgia, I don't find any record of you message, although I delete most messages after I answer them. Please try again at chfpatients.com/contact.htm.
Debbie R, October 29, 2006 - Hi all, I have an ICD and a goiter. I was just wondering if anyone else has these two together, also. I have trouble breathing with the goiter. Mine is a multi-nodular goiter and rather large, I think. My problem is when I raise my arms to blow dry my hair. I have trouble breathing, especially when doing the back of my hair. I am also obese so I don't know if it is the goiters or just plain old being fat. It's probably a combination but I thought I would at least ask someone about it.
It actually has gotten a lot worse since receiving my last ICD, that is also a pacemaker. I also have a lot more swelling in my hands. I have a very short hair style so not much can be remedied there unless I get a perm and let it dry naturally.; which is an option. They don't want to operate on the goiters because of my heart. I asked about doing the goiters when they did the ICD/pacemaker and they looked at me like I had lost my mind.
Any advice, thank you. Debbiedo55@aol.com
Ann D's October 30 reply to Jemima's October 24, 2006 - Hi Jemima, Jon has a page that lists CHF specialists in several states, including southern Florida. I too am from Palm Beach County and there are no CHF specialists in this area listed yet. There were only two or three listed and they were in Coral Gables and Miami.
I do have a great cardiologist that is up on all the new meds. He recently stated that it was time for me to be evaluated for a transplant, but I refused. Why? I have an underlying medical condition with my lungs that automatically disqualifies me here in Florida. I asked my doc what my chances were of receiving a heart, and he stated slim to none due to my other health issues. I didn't mean to ramble on, but just to let you know to hunt around this site and you'll find the names that you want. firstname.lastname@example.org
Margaret P, October 30, 2006 - Greetings to all, Like most of you, this site has been a real help and comfort to me. I am 52 and was diagnosed with CHF and DCM in February of 2006. My cardiologist put me on Coreg, Altace, Lasix, potassium, Lipitor, aspirin. I am a lucky one, and have had no real problems with any of the medications and I feel good most of the time. Of course fatigue is always an issue!
Now I am faced with a question and need help. I am recovering from a pinched nerve in my neck (bone spurs). The orthopedic doctor prescribed Mobic, an NSAID. My cardiologist okayed it. My understanding is that NSAIDs are a real no-no for CHFers, so I haven't taken any yet. The pain is gone, but the numbness continues. Do any of you have any advice, recommendations, or wisdom you can share? I would love to hear from y'all. Margp1@aol.com
Peter T, October 30, 2006 - Hi all, This is for those of you taking diuretics twice a day: What amount of leeway does this give you with fluid intake? Are you able to go past the recommended amount, and by how much? I realize this will vary greatly by individual, but I'm just kind of looking for a rough idea. email@example.com
Jon's note: The 2 liter daily fluid intake restriction is only for those CHFers whose condition cannot be stabilized without it.
Edward M's October 30 reply to Georgia W's October 29, 2006 - Hi Georgia, I've tried reaching you several times, using the e-mail address you've given (firstname.lastname@example.org) but this is not a valid address and my e-mails have been returned as undeliverable. If you would like to have a one-on-one communication, please send me an e-mail so I'll have a correct address to write to. Edward M. email@example.com
Jon's note: Just as a note, please remember that the e-mails that fly through cyperspace because of this message board are a huge part of its worth. If I make a mistake on your address, please correct me. If you give a false e-mail address to avoid spam, don't! Get a second e-mail address from something like yahoo and use that just for this message board.
Linda K's October 30 reply to Lori A's October 29, 2006 - Hi all, I'd love to tell you about the doctor I fired, because it's been close to a year now and it still ticks me off whenever I think about her. On my last visit to her office, I was so fried from not sleeping and the fear of symptoms no one could find an answer to, I broke down and cried and confessed my worst fear - that they were going to find a tumor. Doctor-of-the-year looks at me like I've got lizards crawling out of my ears and asks, "Why would you think it was a tumor?" There was a brief moment of disbelief when I thought, "She forgot! She forgot she's dealing with a cancer patient and she's looking in the wrong places!" So I replied, "Uh, because I have cancer?!" Then she tells me, "We'll get these tests done and see if we can't make you feel better about these symptoms."
On the walk out to the car her parting words and other things she had said kept rattling around in my head. By the time I was in the parking lot I realized she was humoring me. She clearly thought it was anxiety and that my sleeping problem could be solved by "going to bed at the same time every night." I knew there was no way I could work with a doctor who thought she had me figured out and was not listening (which also means not thinking.
A friend of mine recommended her doctor, and she is wonderful! She believes me when I tell her something is not right, and won't stop still she gets to the bottom of things. It's a royal pain to doctor-shop, but the feeling of relief when you find the right one is worth all the effort. firstname.lastname@example.org
Linda K, October 30, 2006 - Hey everybody, I just wanted to make a couple of comments on this wonderful site and the value of positive news. First, Jon, I bet I know why this site keeps you going. Never underestimate the healing power of helping others. Reaching outside yourself into someone else's problems is the best way I know to ease your own. For example, I have strangely fond memories of 9/11. I teach therapeutic horseback riding (17 years now), and on 9/11, I called the barn to see if classes were cancelled. They decided to keep going because students and volunteers kept showing up (we are a very volunteer-intensive activity). Well, over the course of that night, nearly everyone turned up right on schedule and looking back, we all agreed that there was no place as healing to be as there was at the riding center taking care of those handicapped students. Yes, this is a shameless pitch to convince everyone of the value of volunteering. It truly is good for your heart.
Also, like so many people, I found my way to this site because I was scared and depressed. Disease-specific message boards tend to carry a lot of bad news just because people who feel great don't often look for places to talk. I really loved it every time I saw a message that said something like, "It took a year, but now I'm doing better" that made me feel like there was still hope that I would improve.
Well, it's been a year now since I started having symptoms and 9 months since I was diagnosed, and for a long time I felt lousy lousy, lousy, but they've been tweaking my meds and discovered my anemia and I am doing better and staying more consistent. I have resumed taking care of my horses myself, cleaning my house, and have a renewed interest in the things of my former active life. In short, I have reached a level of disability I can live with.
I hope to have further good news for many of you when they turn on my BiV pacer in December. Hang in there, and thank you to everyone for being there when I needed you. email@example.com
Scott B's October 30 reply to Paula J's October 26, 2006 - Hi Paula, I hope your grandfather feels better. Hopefully, the docters are giving him some good advice. From a CHF perspective, I will assume he already takes a cocktail of the regular meds. I will assume he is on some fluid restrictions. If not, stick to 2 liters per day. If he is already on 2 liters, you can dial it back to 1500 liters. He may need to get "dried out" to help with edema). This should help with pneumonia. I assume he spends a certain amount of time a day sitting up (and walking as much as possible). This will also help with pneumonia.
Also, there are the normal considerations with sodium intake - as low as possible (I'm not sure how cooperative a patient you have to work with). Your grandfather's doctor might consider increasing duiretic intake to combat the edema. I hope your grandfather is able to get back to a comfortable life style. Scott B. firstname.lastname@example.org
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.