Jason 8-16 seek job hunting with CHF experiences
David Wilson's 8-16 reply to Susan's 8-14 my low potassium symptoms
Bob 8-16 get on those meds!
Ron 8-16 does anyone suffer slurred speech?
Jim R 8-16 seek info on spironolactone side effect
Pam 8-16 seek CHF doc somewhere near Spokane
Carla's 8-16 reply to Jeff's 8-11 life style & getting heart failure
Hal 8-16 disability payments question
Michelle's 8-16 reply to Roger's 8-11 CPAP, Coreg questions & prayer request
Chuck's 8-17 reply to Jason's 8-16 job hunting with heart failure
Joseph P 8-17 what is this tin taste?
Tunny's 8-17 reply to Michelle's 8-16 Coreg experience, wishing your sister well
Alexandra 8-17 Social Security Disability questions
Joanne R's 8-17 reply to Pam's 8-16 doctor recommendation
Joanne R's 8-17 reply to Michelle's 8-16 Coreg experience
Larry's 8-17 reply to Ron's 8-16 slurring my words
Jon 8-17 Atkins diet and cholesterol
Jon 8-17 a very large thank you
Linda B 8-17 Social Security payments, doc recommendation
Valerie R 8-17 disability success experience
Giorg 8-17 my EF is dropping - help!
Jon's 8-17 reply to Giorg's 8-17 EF vs how you feel & Vo2max
Donna H 8-17 be assertive and questions
Katherine H's 8-17 reply to Joseph P's 8-17 try zinc for that tin taste
Peggy 8-17 seek help with serious a-fib problem
Vee's 8-17 reply to Jon's 8-17 eating plans and cholesterol
Jon's 8-17 reply to Vee's 8-17 eating plans and cholesterol
Pam's 8-17 reply to Joanne's 8-17 information is so important
Greta 8-17 dealing with SSD
Jon's 8-17 reply to Greta's 8-17 dealing with SSD
Clara D 8-17 has anyone had a rash from Coreg?
David Wilson's 8-17 reply to Alexandra's 8-17 my SSD experience
Catherine L 8-18 good news update
Alexandra's 8-18 reply to David Wilson's 8-17 disability situation
Katherine H's 8-18 reply to Clara D's 8-17 rash with Coreg experience
Scott Brown's 8-18 reply to Donna H's 8-17 avoiding the hospital
Mary's 8-18 reply to Valerie R's 8-17 SSD experience
Bill 8-18 am I getting better?
Jon 8-26 some Windows XP Pro questions
Carla's 8-26 reply to Catherine's 8-18 this gives me hope
Janice Cosgrove 8-27 disability doctor experience
Charles 8-27 seek different diabetes meds & more
Bill 8-27 my hair hurts - any ideas?
Jon's 8-27 reply to Bill's 8-27 a possible solution
Donna V 8-27 seek BiV pacemaker experiences & more
Edward 8-27 how does a transplanted heart beat?
Roger 8-28 blood tests coming up & more
Hal 8-28 moving was a mistake
Julie 8-28 seek Coreg experiences
Vee's 8-28 reply to Bill's 8-27 hair pain experience
Cary Deen 8-28 seek anemia information
Cindy 8-28 what caused this, what do we do?
Bill C's 8-28 reply to Bill's 8-27 shingles can cause hair pain
Joy 8-28 update from New Zealand
Alexandra's 8-30 reply to Hal's 8-28 getting financial assistance
Elka 8-30 cholesterol and diet
Bill's 8-30 reply to Jon's 8-27 about that hair cut
Mike 8-30 seek CHF doc in Burbank, California, USA
Mike 8-30 don't forget about EECP
Marty 8-30 intro, seek ideas on these symptoms
Clara D 8-30 seek bread making tips
Carla's 8-30 reply to Bill's 8-27 so I'm not the only one!
Madeline 8-30 seek BiV pacer experiences & more
Jacky 8-30 Lipitor & muscle weakness - seek ideas
Kim 8-31 really need some input
Don C's 8-31 reply to Edward's 8-27 why transplanted hearts beat
Don C's 8-31 reply to Mike's 8-30 doctor recommendations
Lori K's 8-31 reply to Jacky's 8-30 Lipitor & muscle weakness experience
Ron 8-31 does anyone else yawn all the time?
Mary Anne 8-31 seek opinions on ab workouts
Marty's 8-31 reply to Jon's 8-30 can I reach target dose?
Jon's 8-31 reply to Marty's 8-31 I think so
Bryan's 8-31 reply to Madeline's 8-30 biventricular pacemaker experience
Donna H's 8-31 reply to Scott Brown's 8-18 update, seek CPX test experiences
Jon's 8-31 reply to Donna H's 8-31 CPX test experience (Vo2max test)
Jack D's 8-31 reply to Jacky's 8-30 muscle problems, statins & CoQ10
Myrtle C's 8-31 reply to Bill's 8-27 hurting hair, tender scalp
Myrtle C 8-31 potassium supplements warning
Roger's 8-31 reply to Clara D's 8-30 low sodium bread machine recipe
Bill's 8-31 reply to Carla's 8-30 thanks for all the replies
Paul D's 8-31 reply to Carla's 8-30 low sodium recipes
James' 8-31 reply to Clara's 8-30 low sodium bread machine recipe
Dorothy 8-31 my experience, anemia
Ron's 8-31 reply to Madeline's 8-30 you're not alone
Steve Martin's 8-31 reply to Donna V's 8-27 biventricular pacer experience
Tod 8-31 seek SSD/Medicare/SSDI info
Bill's 8-31 reply to Myrtle C's 8-31 thank you
Jason, August 16, 2004 - Hi, I was just wondering if anyone had any troubles finding a job after being diagnosed. Back in May I was diagnosed with CHF and cardiomyopathy. While I was in the hospital, and the time off the doctor wanted me to take off afterward, my position had to be filled at my work. I wasn't upset about loss of the job since I had been looking to move on before the whole thing happened.
Now that I'm doing the job search, as soon as people find out about the CHF and the cardiomyopathy, they lose interest in hiring me. I've had a few interviews and calls that end as soon as they find out. I need to get back into the same kind of work that I did before, just for money reasons. I was doing purchasing and logistics, and before that I was a warehouse manager. There are plenty of these jobs out there but they all require a minimum weight requirement to lift. I am now on a 10 lb limit.
When I ran warehouses before, I never used my energy on anything! If you utilize the equipment (forklifts, dollies, pallet jack) you never really do anything. None of the places seem to look at it that way. Has anyone had problems finding work? email@example.com
David Wilson's August 16 reply to Susan's August 14, 2004 - Hi, When my potassium was low I had symptoms of a heart attack. I had bad palpitations and dizziness, and my chest hurt. I had to take some medicine to lower my potassium and the cardiologist took me off spironolactone. I guesss my potassium just crashed. I fired that cardiologist and learned I need spironolactone. I was off spironolactone 2 weeks and I went downhill very fast. It's kind of scary how fast we can get sick with just small changes. It's funny when my potassium was high I felt great, but high potassium can be fatal. When I went to Club Med I thought I was having a heart attack, which is scary because I was told my heart is too damaged to survive any heart attack. I never thought I had low potassium. I guess that is why we go to docs and Club Med - they know more than we do. firstname.lastname@example.org
Bob, August 16, 2004 - Hi, I went to a cardiologist in Seattle for 3 years. I saw him every 6 months. The first time I got a stress echo test and the second time a blood test. He never said a word about either test, never mentioned my blood pressure or my cholesterol or anything else. He never prescribed medications. Once he took a chest x-ray and told me that my heart was enlarged and nothing else. He never mentioned heart failure or anything else so I thought I was all right.
One night in my sleep I could not breathe. I thought I was having a heart attack and went to his hospital emergency room in Seattle. They checked me out and said I was okay. My cardiologist was on vacation so a doctor who works with him prescribed Lasix for me and that was it.
A week later the same thing happened again and this time I went to a local hospital in Bellevue. The cardiologist there gave me an echo and kept me in the hospital overnight. The next morning he came in to see me and gave me a computer print out of his diagnosis. I had heart failure and he explained the whole thing to me. He told me that my blood pressure was too high and so was my cholesterol. My CRP was 8.6 instead of below 4, my blood pressure was over 160. He prescribed Zocor, Zestril, and Lasix for me.
The next week my other doctor's secretary called me and asked me to come in. The doc told me that I needed to come in for bypass surgery the next week and I would feel much better. I told him that I almost died with my last bypass. I went in to see him the next week and he had one of his partners there who did angioplasty and he insisted that I have it done. I did not tell him about the doc in Bellevue and I left. He didn't know that I was now on the meds that he should have prescribed for me years ago and I was feeling just fine. In fact, I have been feeling just fine for the last 12 years since I last saw him and I never had an operation.
Let all beware, if you are not getting meds from your doc, go to another one who will give you meds. I know so many ignorant men who believe that not taking meds is a good thing. It's not! You will make yourself very sick and your doc very rich. email@example.com
Ron, August 16, 2004 - Hi, Has anyone experienced slurring of speach when you reach your "limit" for the day? I've been on Coreg and Mavik for about 3 months now. Thanks. firstname.lastname@example.org
Jim R, August 16, 2004 - Hi, I have been on spironolactone since January. I am wondering how long it takes before a patient knows that he or she will be among the 90% that will not have side effects such as swelling breasts? email@example.com
Jon's note: It can start after one day on the drug or after 5 years on it. In other words, you won't ever know that it can't happen to you while taking the drug.
Pam, August 16, 2004 - Hi, My family has to travel to the Spokane, Washington area to see medical specialists. I am looking for a CHF doc for my father. He has been seeing Dr. Kevin M. Kavanaugh at Heart Clinics Northwest but he's not very personable. Is there anyone out there who lives in the northwestern USA and might have a suggestion? Thanks! :-) firstname.lastname@example.org
Carla's August 16 reply to Jeff's August 11, 2004 - Yes, at first I looked back during my initial diagnosis and shock of viral cardiomyopathy and wished I would have avoided the onion rings and partying from age 21 to 35 as well! Guess what, my doc said that these nasty little viruses don't care who you are and I just got "selected." Why couldn't it have been the lottery instead? email@example.com
Hal, August 16, 2004 - Hi everybody, Well, I finally found a doctor to write my scripts for me and it only cost $50. She can't be my primary doc so she sent me to another clinic that only wants another $50 to obtain a name I can use on the CandaPharmacy form. That will save me about a third. I must have called 25 doctors who said , "Sorry, we can't help you." If I said I had insurance they said the doctor wasn't taking anymore Medicare folks. If I said I had no insurance with CHF they snickered and said all money for all services must be paid up front. For instance, a new patient visit with lab work, results and findings would be in the upper $300s to low $400s range.
Since it was SSA that is causing me all this grief, I decided to see if I can get retro disability payments from them to help pay for my meds. Everyone and I mean everyone has a different story about what is owed them for SSD. I called the 800 phone number today and the woman said your benefits start when SSA determines you are disabled. I've talked to folks who received every last dollar from the day of diagnosis, others from the day they filed. Do any of you fine folks know for sure?
I was diagnosed in January of 2001 and received 3 months benefits nine months later. Isn't that just the SSA usual method? Do I or don't I have 6 payments coming somehow or other? Be well. firstname.lastname@example.org
Jon's note: No. You never get the first 6 months payments.
Michelle's August 16 reply to Roger's August 11, 2004 - Hi Roger, Well, I hope you are able to get the humidifier and heater for your CPAP. When I have stuffiness or a sinus headache it really makes a difference in my sleep. The humidifier also makes it much better as far as the dry mouth feeling you sometimes wake up with. I was lucky in that my health insurance covered everything even when it came to getting a new CPAP. It is a Respironics and it comes with an attached humidifier and heater. It is also much, much quieter than my old one. As I said before, anyone who is diagnosed with sleep apnea and recommended to use a CPAP should really try to get used to it. It will make a world of difference in quality of sleep.
I have a question for anyone about Coreg. I didn't really notice any effects (I am only on the starting dosage of 3.25mg bid) until about 2 weeks into taking it. I am kind of dizzy at different times and while doing different things. Sometimes even if I turn over when I am lying down the whole room seems to tilt and move! If I get up too fast, I get that "slanted room" feeling. I hope this is the Coreg and not something else! I also can't say that I feel that great. I seem to be having to take a nap every afternoon. I am trying to establish a routine that I can feel comfortable with and not nag myself for being lazy, but I never felt the need for naps every day and it kind of ticks me off.
Also, has anyone ever gotten little red splotches on the top of their feet? I never noticed these until I had been on the Coreg for a couple of weeks. As far as the deal about Coreg contributing to depression (which I read a lot) I must say I feel like I have that under control. I used to take Wellbutrin for about 5 years and I stopped it about a month before I was diagnosed with CHF and PH. I have been feeling fine without it even though my family has had to deal with my illness and now we find that one of my sisters has cancer. We are all just hanging in and trying to keep a sense of humor about all this. It is kind of humorous in a way because there are 6 sisters and one brother (my twin) in our family and the two youngest sisters (myself and my next older sister) are the ones who are getting ill.
I am forever thankful that I have my family and wish everyone had such a support system. As when I was in the hospital a couple of months ago, we will almost all be at the hospital when my sis goes in for a major operation to try to remove all the cancer this Friday. Prayers would be greatly appreciated and I will continue to think positive thoughts for all of you out there also. I am so thankful to have a place to ramble on like this and ask questions. Please have great days everyone. email@example.com
Chuck's August 17 reply to Jason's August 16, 2004 - Hi Jason, You are not required to give out medical information, so why are you? I'm not talking about being deceptive, just don't volunteer any information unless you have special needs for your condition. If you show worries about your condition, then of course your potential employers will. I just recently started a new job and didn't have a problem at all. I even had to take a drug test and list all the meds I was on. firstname.lastname@example.org
Joseph P, August 17, 2004 - Hi, My doc has made a change in my meds and I get a tin taste in my mouth every now and then. What is this? I forgot what it is and would like to know so I can point it out my doc. Thanks, Joseph P. email@example.com
Tunny's August 17 reply to Michelle's August 16, 2004 - Hi, I've been on Coreg for about 9 months and my first 2 weeks were different: I napped a lot, was slightly dizzy and such. By the third week there was some improvement and by the fourth week all was well. I have had no effects from Coreg since. I hope your sister's surgery turned out alright. We are praying for her. firstname.lastname@example.org
Alexandra, August 17, 2004 - Hi, I have a question about SSD. I applied in March, 2003. I was rejected twice, appealed in October of 2003 and I am still waiting for a hearing. I did not apply for SSD when I had my first pacemaker in January of 2002. Thinking back, that was when I was at my worst because the pacer may have kept me alive but I was slowly developing the HCM (diagnosed June of 2003) and CHF (diagnosed January of 2004). I could hardly function. I never thought to apply, thinking I would never get it because of my age (34).
Is it up to the judge to decide when you were technically deemed disabled? Or is it just from the date you applied for benefits? My CHF doc stills says that I am in no condition to work any sort of job and that I shouldn't even drive. He said he would write a letter as such, which is in my favor.
Does it just come down to the judge and what kind of day he may be having? I have a college education and was denied initally based on my ability to sit at a desk. Do these judges and independent medical evaluators take into consideration the medications and their effects on a person? At my last stress test, I had to stop after 2 minutes because I couldn't breathe. My cousin is my lawyer and I know he will work hard for me, but I just do not see an approval based on my age and education. I wish they could all live a few days with me and see what it is like and then they would get it.
Does anyone have any thoughts? Thanks! email@example.com
Joanne R's August 17 reply to Pam's August 16, 2004 - Hi, I am a devoted fan of Dr. Michael Kwasman, MD, FACC, at Spokane Cardiology, phone (509) 482-2025. This is a large practice with many doctors and I can respect every one of them. I particularly value the prompt, straightforward care and responses to my questions from everyone I deal with there: Doctors, nurses, physician's assistants, the whole group.
Thanks to Jon and this site I can ask intelligent questions and I appreciate knowing something about the CHF side of biology. When I first saw Dr. Kwasman I usually took my paramedic son with me on office visits just to be a backup in case I missed something. You might do well to accompany your father on these visits too. Be well, Joanne. firstname.lastname@example.org
Joanne R's August 17 reply to Michelle's August 16, 2004 - Hi, You could be adjusting to Coreg pretty much the same way I did. I had been told I might likely feel worse before I felt better and that certainly was the truth. If you need a nap and can arrange it, for goodness sake don't beat yourself up over it! The point is to live as healthily as we can and the need for sleep is totally valid - not a reflection on your character. The amount I slept shortly after diagnosis and beginning Coreg would have had my mother spinning in her grave. It didn't bother my physician at all, other than being a little envious of me.
Anyway, my Coreg dose has been stable for a couple of years and the symptoms you discribe are a good distance behind me. Be well, Joanne. email@example.com
Larry's August 17 reply to Ron's August 16, 2004 - Hi Ron, I don't know if this is common but since having a heart attack four years ago, I tend to slur my words when I get tired. My wife tells me all the time, "You need to take a break, you're slurring your words." Larry. firstname.lastname@example.org
Jon, August 17, 2004 - Hi everyone, This is just an interesting note on the Atkins' Diet and cholesterol levels. My wife and I have been eating Atkins for 2 years now. We do it right - high fat, medium protein, low carb intake. She had her cholesterol levels checked the other day and said I could post her results here. Her HDL (good cholesterol) has risen to about 160, while her LDL (bad cholesterol) has dropped to 44. Her triglycerides have also dropped significantly. So much for eating high fat raising your harmful cholesterol levels. <g> Her doctor said to keep doing whatever she is doing. Jon.
Jon, August 17, 2004 - Hi everyone, I just want to express my thanks and well, shock, at how great our readers are. My operating system situation is taken care of so I will be offline probably Thursday through Sunday, so everything will be read-only starting Thursday, August 19 and will be interactive again starting Monday, August 23rd. If I only have to format one drive, it won't take that long; if I have to do both drives, it will. If the schedule will be different than stated here, I will repost since I am waiting for a new graphics card before tearing the system down.
I have also received an incredible amount of support and help regarding the content stolen from us. You are some of the most creative people with whom I have ever spoken! Now, I have been able to file a direct formal complaint and tomorrow may be able to speak to the offending group's leader due to the great input from all of you. If I need more help, I will certainly ask and the offers I have not yet used are very much appreciated.
Frankly, the degree of support and help sort of overwhelms me. Thank you all very much from the bottom of my heart. I'm not a touchy-feely person - as all the old-timers here know <g> - but I am truly touched. Jon.
Linda B, August 17, 2004 - Hi, Just a word about SSA. It is now a 5 month lag time for benefits. In other words, your payments start with the sixth month after diagnosis. If you are determined disabled in August, your first full month of disability is September and your first payment is for the month of February. You receive the payment in March. The reason they do this is the rule that everyone should have enough money saved to live for 5 months. Give me a break!
If you are without income (like I was), you get SSI for those initial 5 months. If you are eligible for both SSI and SSDI for any number of months, they pay the SSI first so you will have Medicaid, thank the powers that be.
On another subject, I live in Austin, Texas, and see doctors at Texas Cardiac Arrhythmia. They are a wonderful group and in the forefront of research. Currently, they are one of the few groups authorized to do stem cell transplants for heart failure. This may be of interest to those of you headed for transplants. email@example.com
Valerie R, August 17, 2004 - Hi, I am age 61 and was diagnosed with CHF and IDCM in 1995, but I only applied this last May for disability because that is when I had to give up teaching 8th grade English. I had taken a year off without pay and was set to retire on 6/11/2004. I decided to apply for SSD before I retired and didn't have time to get a lawyer.
I filled out all the papers I was given in great detail and talked to my three main doctors: My general doc, my transplant evaluation doc, and my own cardiologist. I also talked about some of the side effects which have led me to go to endocrinologist and opthomologists. I call them the "gists."
When I say I filled the papers out in detail, I do mean detail, adding extra pages. I think my gists wrote good letters too. I have not been notified but I got a huge check yesterday and called. They said I had been accepted and by their rules, they could go back to May of 2002 and give me retroactive pay from May of 2003. I feel like I was just accepted to the college of my choice!
It might be my age, my numbers EF of 10%, Vo2max test of 14, my doctors' letters, or the detail I neatly put in. It wasn't education though, because I have a Master's Degree. firstname.lastname@example.org
Giorg, August 17, 2004 - Help me, please. I have suffered an unexpected EF drop from 45% to 30%. That drop was in a few months, eight months to be precise. I found out yesterday in my last echo. My cardiologist told me that there is not anything to worry about because my heart size is pretty much the same and the left ventricular filling pattern is still pseudo-normal and not restrictive. He says EF depends a lot on both the machine and the operator.
Okay, but to me that looks like a significant drop and since my diagnosis 3 years ago I had not any drop. On the contrary, I experienced a countinuous improvement from 17% to 45% in EF. Do you guys think I should be concerned about that drop?
My cardiologist reminded me also that my Vo2Max last time I checked it two months ago was quite good, almost normal for my age; I am 29 years old. He thinks I should look much more at my Vo2 and how I feel than at EF. So is it true? Is EF less important than other factors? Thanks you all. email@example.com
Jon's August 17 reply to Giorg's August 17, 2004 - Hi Giorg, In my opinion, Vo2max is a better predictor of prognosis than EF and it is certainly more indicative of how you will feel than EF has ever been. So yes, how you feel and your Vo2max are more important than your EF. Don't get me wrong: EF is still an important measurement. However, it is not the end-all and be-all that too many doctors think it is for CHFers. Make sure you are on as many of the right meds as possible to bring your EF up, lose any extra weight, and exercise in a smart way.
My own EF is good at 50% but my Vo2max stinks at 20 ml/kg/minute, and I have a lot of CHF symptoms despite my near-normal EF. I think that if my Vo2max came up I would function a lot better with the 50% EF. I have done all I can to raise my Vo2max through losing weight and regular exercise but it just won't go up. Be very happy with that near-normal Vo2max score - that's great! Jon.
Donna H's August 17, 2004 - Hi all, I am almost embarrassed to relate this story but perhaps it will help someone else. About two weeks after having an ablation and a pacemaker/defibrillator implanted, my husband had his teeth pulled to prepare him for heart transplant. He felt worse after having his teeth pulled than he did after his surgery. When we went back to the cardiologist for a checkup on the device implant, he was so sick that he could barely make the 3-hour trip to the hospital. We were late for his appointment (the first time in 4 years!) and the cardiologist wasn't happy. He examined the incision, the people from Guidant checked him out, and another cardiologist looked over the paperwork and listened to his chest. Through it all, my husband could barely sit in the wheelchair because he felt so awful.
He had two more days of appointments and tests for transplant evaluation. His test results showed poor lung function and everyone commented that he didn't look well but it wasn't until the last appointment (of 13!) on the third day that he saw his regular doctor, who is actually a nurse practioner. She was concerned about him so she ordered a chest x-ray and found that his lungs were completely full of fluid and he was in heart failure. She sent him directly to ICU and he began a dobutamine infusion. He spent the next four days in ICU and lost 37 pounds.
For the past four years, he has been in and out of heart failure several times and usually we recognize the symptoms right off but this time we completely missed it. I was upset that we missed it but then realized that two cardiologists and several other doctors and nurses had also missed it! I am telling our experience because I hope that the rest of you will be more assertive than we were.
For some reason, no one could hear the fluid building in his heart and lungs. When he is in failure he doesn't always think clearly so it is necessary for those around him to always be aware of what is happening. Is that true for others with heart failure or could part of it be due to his medications? firstname.lastname@example.org
Jon's note: I hope others reply. I just want to point out this is why weighing yourself every single day to spot fluid buildup early is so very, very important.
Katherine H's August 17 reply to Joseph P's August 17, 2004 - Hi Joseph, I had the same thing happen to me and my primary care doc told me to take zinc until the taste went away. I took it for about 10 days and the taste was gone. I don't remember how much I took - probably what was recommended on the bottle for a daily dose. I hope it works as well for you. email@example.com
Peggy, August 17, 2004 - Hi, My husband was diagnosed with CHFand DCM in November of 2000. Since then he has done real well after being in the hospital and getting on his meds.
One problem that he is having is a-fib, and it is practically wrecking his whole life! He's had three cardioversions, been put on amiodarone and is now on tikosyn. He also had a pacemaker put in this last December, but had to have it removed 5 weeks later because of a staph infection. The doctor said it could help his a-fib. The pacemaker recorded everything and it showed that he is in a-fib most of the time.
Has anyone had a pacemaker put in because of this reason and actually had it help him? The doctor wants to put the pacemaker back in. He also has a really slow heart rate around 30 beats per minute, but then in a-fib it's really high. He's having a hard time working most days.
Jon, I would like him to see a CHF specialist, but will have to travel to Chicago. Do you think a CHF specialist will be able to help him with his a-fib? I would appreciate any help he can get! Peggy. RyoungAngora4683@aol.com
Jon's note: I can't be sure but if you are going to the Chicago area, I strongly recommend seeing Dr. Marc Silver. His contact info is at the CHF Specialist Listing under the state of Illinois. Frankly, a pacemaker sounds like a good idea but that's a complex issue.
Vee's August 17 reply to Jon's August 17, 2004 - Hi Jon, Be cautious with saturated fats, though - they are not for everyone. I have been trying all different kinds of dietary approaches since 2001 to get my cholesterol under control without medication. I am still tweaking it, but what has worked best for me so far is a 40% fat-40% carbohydrate-20% protein diet, that is low in saturated fat (less than 8%), high in monounsaturated fats, and low in high glycemic index carbohydrates. I got my LDL cholesterol down from 216 (yikes!) to 110.
Then I tried to decrease carb intake even more, thereby taking in more saturated fat (13%). That raised my LDL, although it also raised my HDL. So I have had to concur that saturated fat is problematic for me and that I may be genetically prone to developing high cholesterol.
On the other hand, some carbohydrates may be even more harmful, yet this is something that I find virtually unresearched although we are starting to hear a lot more about syndrome x. Based on my experience, my theory is that high circulating levels of insulin affect cholesterol even more than saturated fats. Hey, I know my study sample size is small (one person) but the variables have been well controlled. <g> I have been using a Nutricounter which is great for keeping tabs on sodium intake as well. My next tinkering will be to see whether the cholesterol in an egg a day has much impact on my LDL levels. firstname.lastname@example.org
Jon's August 17 reply to Vee's August 17, 2004 - Hi Vee, A few points on Atkins: My post didn't recommend the Atkins Diet. I actually say that it is not for everyone at my page about Atkins. Exercise is critical for lowering LDL cholesterol, and both my wife and I are on specific exercise plans and have been for almost 2 years.
I think that to evaluate an eating plan, you have to follow it one specific way for at least a year before tweaking it and most people don't. It's very easy to assume cause and effect where it may not be the way it appears. I have made that mistake more than once!
My wife's results are right in line with the few trials of fairly strictly followed Atkins eaters. Also, eating saturated fats reduces insulin spikes so dietary fat is closely linked to circulating insulin level.
If you count the percentage of fat in your diet to a number as specific as 8 or 13%, you have more dietary knowledge and discipline than I have and should easily succeed in meeting your goals. I settle for plus or minus 5% and thought I was disciplined. ;-)
I have found no proof that dietary cholesterol such as that in eggs affects blood cholesterol level. I guess I will consider this a media myth unless someone points me to some proof - which could easily have escaped my attention. Jon.
Pam's August 17 reply to Joanne's August 17, 2004 - Hi Joanne, Thank you for the reply. It would be great to accompany my father when he goes to the doctor. Unfortunately I live in Texas and he's in Idaho. That's why I'm so grateful for Jon's site. It creates a bridge of information that virtually spans the globe! email@example.com
Greta, August 17, 2004 - Hi all, I just thought I would put in my two cents worth on the SSD issue. Here's my experience: I was diagnosed with CHF in March, 2003. I applied for SSD in July, 2003. I received my letter of entitlement of benefits 12-23-2003, with payments beginning June, 2003. They determined that I became disabled 12-13-2002 and as a result, I had been considered disabled much longer than I estimated, which was March, 2003. According to SSA, you have to be disabled for 5 full months in a row before you are entitled to benefits.
SSA puts out a booklet titled "Social Security, What You Need To Know When You Get Disability Benefits." What the book doesn't tell you and this may not be universal, is that if you hire an attorney it will not cost you anything. The best attorney is one who specializes in SSD. If I understand correctly, an SSD attorney who agrees to take your case is paid by the government. The rules that apply in Arkansas with SSA should apply all across the USA. Of course, we all know the government can never agree on anything. Right?
Be cooperative, be very cooperative with SSA, be nice, and be helpful. I believe the impression you make on the case worker goes a long, long way. Human nature, the case worker's, still figures in the equation. Get them on your side and it has got to help. I also believe that a cooperative and good record keeper, and batting-for-you cardiologist and PCP make a big difference. Blessings, Greta. firstname.lastname@example.org
Jon's August 17 reply to Greta's August 17, 2004 - Hi Greta, I thought I would address this because others have also stated that SSD attorneys don't cost any money. In my state and one neighboring state, the government does not pay for an attorney. The attorney gets a percentage of your first, and largest, SSD check, limited to no more than 25% by federal law.
SSD programs are at least partly administered by states, and often use regional and federal "guidelines." There is no country-wide conformity to be found as far as I can tell so you sure got that one right! ;-)
You are absolutely correct that an on-the-ball set of doctors can really help, and that cooperating with SSA is important. I should note though, that I have never spoken to a case worker in 10 years and my current one seems to have permanent voice mail at her phone number and has not returned a call. SSA has changed my case worker without any notification to me before, and they insist that I use their painfully busy 800 number to contact them instead of giving me the local, direct number. As you can no doubt tell, I am not a big SSA fan. <g> Jon.
Clara D, August 17, 2004 - Hi everyone, I developed a flat, itchy, pink rash on my neck and chest while increasing my Coreg dose from 6.25mg twice daily to 12.5mg twice daily. I had been slowly increasing the dose over a period of six weeks and at the time the rash appeared I was taking one and three quarters of a 6.25mg pill twice daily.
My doctor said to cut back to 6.25mg twice daily and if the symptoms went away to try again to increase the dose. That was five days ago. The itchy feeling is now almost completely gone but the rash is still visible, even though it has faded somewhat.
Has anyone else experienced this side effect with Coreg? If so, were you able to continue with the drug and eventually increase your dose? This is the first problem I've had with Coreg, though I've had to discontinue a number of other drugs. I'd like to stay on Coreg if at all possible. I would appreciate hearing from anyone who has had a similar problem. Thank you, Clara. email@example.com
David Wilson's August 17 reply to Alexandra's August 17, 2004 - Hi, About SSD, in my opinion it is a crapshoot. It also varies state to state. I was initially approved the first time I applied. I applied in 10-2000 and got my first check in March of 2001. In June of 2003 they kicked me off saying I was well enough to work. This was because my EF got to 40% from 15%.
I appealed and had an echo done which showed my EF was down to 25%. I was reinstated and I never lost any money. I have a BA degree too. The meds slow me too much to work steadily. I substitute teach once in awhile.
All SSD rules are subjective and your state has different rules too. Here in Missouri if your EF gets to 40% you may be kicked off SSD. If your EF stays below 35%, they leave you alone. I don't know how it works in your state. Here in Missouri when they found out my EF was down to 25%, they backed off and they did not give me a hard time at all.
You must stand up and fight for yourself. I think they also are harder on you, the younger you are. They don't want to pay out money for years and years. In 12 years, God willing, my SSD will change to SSA retirement. Good luck and I will pray for you. firstname.lastname@example.org
Catherine L, August 18, 2004 - Hi, I am posting this to give everyone hope. Miracles can happen. I was diagnosed with idiopathic (probably viral) cardiomyopathy 2 years ago and an EF of 30%. In June I saw my cardiologist. I had an echo and it came out great. My EF measured 55%. They took me off my beta-blocker for 2 days and I had a stress EKG on a treadmill. My heart performed above the maximum for my age (57) at 167 bpm, with only 2 PVCs (not abnormal, per my doctor).
My cardiologist says my cardiomyopathy is cured. I felt like weeping with joy. I will stay on my ACE inhibitor (2.5mg Altace) permanently. More and more doctors. recommend an ACE inhibitor even for their healthy patients. I halved my beta-blocker (Toprol-XL) to 25mg and plan to stay on that for a year at least, even though my doctor says I don't need it. I figure it makes it easier for my heart to beat and I tolerate this dosage much better than the 50mg dose. So have faith, everyone. Amazing things can happen! Good luck and hugs to you all. Many thanks for your past support. My prayers will always be with you. Catherine. email@example.com
Alexandra's August 18 reply to David Wilson's August 17, 2004 - Hi, I just have a bad feeling because of my age, my 3-1/2 year old who may entitled to benefits, and my husband, who does work but is considered partially disabled due to an accident at work. I don't know if he may be entitled, but I doubt it. All my echos and EKGs showed an extremely bad heart with a 10% EF. However, a MUGA showed a 45% EF. I feel like crap most of the time because of the meds, with fatigue, dizziness, you know the drill.
I asked my CHF doctor if a new MUGA was needed now and he said not at this time. An echo will show SSD that I should be lying on the floor, but a MUGA is a more true indicator of what I am at. I wonder if they can order a MUGA or is this test just too expensive for the government? If echo is the standard, who knows?
I am certainly not trying to get SSD for no reason. I just want to to have the ability to take care of my son and my meds. My husband's job helps, but is never enough. I am lucky that my father is in a position to help me when I need it. My husband was in a wheelchair for 2-1/2 years from his work accident and has had 11 reconstructive surgeries. I took care of him, which was draining to say the least. Literally a month later, I got sick. I am so glad that my son is healthy.
Thanks for all the advice from everyone. Like you said, a crap shoot. Kiss the dice for me. Peace. firstname.lastname@example.org
Katherine H's August 18 reply to Clara D's August 17, 2004 - Hi Clara, I had the same problem with Coreg. I actually had the rash all over my body and it took cortisone to get rid of it. We backed down on the Coreg and then 4 weeks later were able to start back up but very, very slowly. I can't remember just what dosage I was at when this happened but it was very early in the process. I started on it in May and the rash happened in July or August.
To this day I at times feel an underlying irritation that is more than dry skin and I have to think the Coreg is bothering me more than it does at other times, but it's tolerable. Good luck! email@example.com
Scott Brown's August 18 reply to Donna H's August 17, 2004 - Dear Donna, I must admit I am completely flabbergasted by your story. Being able to detect fluid retention is not always easy, as you have observed. The very basics of treating patients who have had heart failure is regular use of diuretics. I am glad you brought your husband's case to light because there might be other readers in the same boat. It is vitally important that at very minimum, CHFers:
Bottom line, if you want to avoid visits to the hospital, these minimal requirements are not optional. Thanks, Scott Brown. firstname.lastname@example.org
Mary Anne's August 18 reply to Valerie R's August 17, 2004 - Hi, My husband applied for SSD and got it first time out. Everyone said it was surprising that it happened. However, you and he have something in common - you both did an excellent job of filling out the papers. I swear that had something to do with it. He did it once, completely and thoroughly, and was given SSD. His condition is totally different from yours, but I feel being accurate, concise and thorough makes the difference. email@example.com
Bill, August 18, 2004 - Hi, After my MI, the cardiologist (interventional - there are no CHF doctors in this little town) wanted to do another bypass and valve repair or replacement. After the work up and testing, he now says it might not be as much help as he thought. Now, that is scary. My EF was 26% and is now 40%. My BNP was 426 and now it is 204. I am just about over the CHF except I am very short of breath. The doctor has upped my Lasix from 20mg daily to 80mg and still my legs are swollen and I am limited to what I can do and breathe. I assume I am better? Bill. firstname.lastname@example.org
Jon, August 26, 2004 - Hi everyone, Well, It's been a long week. I had to start from scratch twice; long story. I will still be configuring programs and settings, and patching security holes for a week or so but I think I can keep up with posts now.
My scanner doesn't work so if anyone knows of drivers that actually work with a Microtek ScanMaker V6upl under Windows XP Pro, please let me know - the ScanWizard5 set on the Microtek site don't work on my system (I don't care if it's USB or parallel at this point).
Also, does anyone know how to prevent PGP (version 220.127.116.11) from caching passphrases in Windows XP Pro's pagefile? Right now, I am forcing Windows to delete the pagefile every time it reboots but this causes other problems. Thanks.
Finally, please don't ask me what I think about this or any other operating system. <g> I'm just a retired cabinetmaker. Jon.
Carla's August 26 reply to Catherine's August 18, 2004 - What a miracle! I've tried e-mailing you, but haven't heard back. I just wanted to ask you what you've done in the last couple of years. What meds have you taken? What type of exercise and diet changes have you made? You've given me and my husband hope! Thanks to you, I'm putting off my tubal ligation for awhile and going to continue to be strong and positive that I will recover! email@example.com
Janice Cosgrove, August 27, 2004 - Hi everyone, I just wanted to say that I received a letter last week from SSD and they wanted to send me to see a doctor other then my own so they could make a decision. You would think that they would send me to a heart doctor but no, they sent me to a family doctor.
While I was there they checked my hearing and I now know I can hear. I had to read an eye chart and I can see. I had to raise my hands over my head and then put them back down, just that fast. I had to bend over and touch my toes, only once, and then he had me walk about two feet and then walk back heel to toe. He listened to my heart for about 2 seconds. I don't even think he had time to hear it let alone see if I had a regular heartbeat.
He then asked me why I wasn't working. I told him of the shortness of breath and that my doctor hasn't released me to do anything. He said well, that's all I need and I'll be sending them a report, and you need to exit down the hall through the doors. I wanted to say what is this?! but instead I exited down the hall and through the doors.
I guess I may as well go ahead and find a lawyer that deals in SSD. I think I'm through venting now. Everyone take care. firstname.lastname@example.org
Charles, August 27, 2004 - Hi, Thanks to Jon's forwarding the studies/caveats, I stopped metformin/glyburide combined with my heart meds. This halted the ascites (stomach edema).
Now I need to know if anybody has a safe oral diabetic med that has no effect on heart meds. I have seen the CHF specialist in Mobile listed on this site (Burnham), and he increased my Coreg to 25mg twice a day and my torsemide (loop diuretic) to 50mg per day. I am improving and not experiencing depression or fatigue.
In demanding my stress records from the Crestview clinic I discovered my EF tested at 28% in March. I have resumed water aerobics and begun biofeedback therapy with the Resperate machine to lower my blood pressure (3 times per week for 15 minutes). I am mighty glad to see Jon back online, and the beat going on. email@example.com
Bill, August 27, 2004 - Hi Bill, This seems a little silly, but touching my hair makes my head hurt. All comments welcome. Thanks. firstname.lastname@example.org
Jon's August 27 reply to Bill's August 27, 2004 - Hi Bill, Amputation may be one answer - your hair, not your head! <lol> Sorry, but I couldn't pass that one up. :-) Jon.
Donna V, August 27, 2004 - Hi, I'm so glad the board is back! I've not posted in a long while but would appreciate any and all input whether by post or a direct e-mail about experiences (the good and the not so good) with a biventricular pacemaker.
I first have to return for a Vo2Max test in a few weeks. I think the CHF doctor and I already know I'm going to "flunk" the thing. My EF remains below 20% and I'm trying again to get my Coreg dose from 37.5mg to 50mg per day. I didn't think I was any worse until the cardiologist said I was. I'm trying to make myself want this pacemaker. Thanks for any thoughts. Donna V.
PS. A lot of us have complained of muscle and joint pain, and received little, if any, attention to that from our doctors. My friend, a pharmacist, explained hypoxia. The heart isn't pumping enough oxygen to the lower extremities. It made sense to me and just having an idea of what was going on made me feel better - but I still ache. email@example.comJon.
Edward, August 27, 2004 - Hi, This site is brilliant! Perhaps I'm a bit out of place but I have a question. Does anybody know, how after the transplant, the heart keeps beating? I know the heart is autonomic, that there are nerves that regulate the cardiac frequency. Does someone know how this keeps going after the surgery? Thank you very much, and good luck. firstname.lastname@example.org
Roger, August 28, 2004 - Hi, Well, I'm fasting tonight so I can get some blood drawn in the morning and will see the PCP on September 8. They like to have the blood done early. I will see how my cholesterol checks as far as total, LDL, HDL, triglycerides and a few other tests; also the A1c for my type 2 diabetes.
I've been doing 1/2 teaspoon of cinnamon a day for the last month or so as it is supposed to lower cholestorol levels and sugar. I'm on a heavy metal detox, along with everthing else and the cardiologist told me 3 months on and one month off and then back - this for a year and then see how things look. When I was off that month, I was getting a lot of sugar readings in the 70s and 80s and now that I'm on again, back to around 100 for the average. The meds really throw some of the readings off!
Sorry to ramble here. So good to have this board back online. Once something is gone, we realize just how much we appreciate it. Thanks, Jon! email@example.com
Jon's note: Watch the cinnamon if you take a blood thinner like warfarin, since cinnamon is a proven blood thinner as well.
Hal, August 28, 2004 - Hey Folks, I hope everyone is well and enjoying the last of summer. As some of you know, I decided to not burden my family any longer and moved from California to Arkansas. The idea was that it's a lot cheaper to live. Because of stupidity I spent 6 weeks looking for a doctor who takes new Medicare patients. I'm going to have to pay for my meds that are $3120 a year. That's American pharmacy prices, the Canadian price is $1160. Thank goodness I had some money saved. The next big surprise was that Arkansas folks receive less disability benefits than do California folks. Right after receiving that tidbit, the new SSA books that I requested arrived and I got to see what my life will be like forever more.
Anyway, after figuring it all out I will be officially homeless and not able to pay monthly rent come next July. I'm looking for cheaper rooms now. My little mind isn't going to be able to handle being so broke I can't afford a movie. The idea of livimg with strangers doesn't appeal to me either. My savings will be depleted so I will have to go to work if I want to eat and have meds also. It's looking pretty grim so far. I will keep you posted. firstname.lastname@example.org
Julie, August 28, 2004 - Hi All, This is the first time I have posted here, although I have been a lurker for over a year. I was diagnosed with DCM in the spring of 2003. Before heart cath, I was started on Coreg 6.25mg twice a day. After heart cath, my Coreg dose was increased to 12.5mg twice a day. I have been on this dose ever since.
I went from being "the perfect heart transplant candidate" to "transplant is no longer an option" in the first 3 months. I had markedly good improvement. I have continued to improve with every visit. My last visit, my cardiologist told me we would probably be able to reduce dosages on heart meds at my next visit. We discussed the fact that I would be on a beta-blocker and ACE inhibitor the rest of my life. I was really looking forward to lowering my Coreg dose. Yesterday, at my six month check-up, he announced he wants to "push me." He thinks if my Coreg dose is doubled for the next six months, I could eliminate all signs of DCM and return my heart to normal. He said I am the perfect candidate for this because I have no blockages or obvious damage from DCM to my heart. I was very lucky and was diagnosed very quickly. Since last May, I have gone from an EF of 20% to what he believes is 45 to 50% EF, almost normal heart size, with no more mitral or tricuspid regurgitation.
In fact, my last visit he had told me just glancing at my echo that it would be hard for anyone to comprehend what I have been through in such a short time, and the vast improvement I have had, as it was almost normal looking then. Has anyone else had their Coreg increased for this reason? Anyone? I feel like I am a guinea pig.
I have just in the last month started regaining some energy, and believing I could possibly return to part-time work. I know this is good news, but can't help feeling Coreg increase will be a setback for me. Comments? Julie. Juliedoll51@aol.com
Vee's August 28 reply to Bill's August 27, 2004 - Hi Bill, I know exactly what you mean. Are you on spironolactone (Aldactone)? When I stopped taking it, my "hair pain" cleared up right away. :-) email@example.com
Cary Deen, August 28, 2004 - Hello, I just received the results of my latest blood tests and it seems that my hematocrit level is low (35). My hemoglobin is also low (12). My CHF doctor wants to run tests to see if I am anemic. After some reading I discovered that many people suffering from CHF are anemic. What is the cure for this? I analyzed my food intake and discovered that I was getting very little B6, B12, folic acid, or iron. I've started eating lean red meat again. Causes of anemia that I've read about include colon cancer and tumors. Any thoughts? Thank you. firstname.lastname@example.org
Cindy, August 28, 2004 - Hi, This is my first time here. I am looking for info on someone with a-fib. A little over a week ago my other half (CJ) experienced a chest wall cramping and felt really bad. He did not go to the ER and his breathing became worse each day. His breathing was very labored and I finally got him to go to the ER.
His heart rate was between 150 and 180 beats per minute. Needless to say they admitted him to CCU. They gave him IV fluids and other meds to get his heart rate under control. A stress test was done with an EF of 73% and a small fixed defect in the apex. He does not have insurance. They kept him in CCU for 3 days and then sent him home with a beta-blocker and told him to take an aspirin a day as well.
It seems strange to me that they would do this. I have never heard of someone being sent home from a CCU before and I would like to know what caused this problem and how to help fix this if possible. Any clues would be helpful as I am not sure really what's going on. Thank you. email@example.com
Bill C's August 28 reply to Bill's August 27, 2004 - Hey Bill, Just a thought - I had the same thing happen several years ago. My hair became very sensitive and hurt to comb, then lumps came up on my skull. My doc quickly diagnosed it as shingles. The lumps usually do not break out in the usuall shingle rash. They can become very painful, though. God bless, Bill C. Crawdaddy_1@chartertn.net
Joy, August 28, 2004 - Hi, Despite my silence, I have been reading avidly, including The Archives. Thank you to everyone. I paid to see a cardiologist since I was not prepared to put my miserable life on hold for many, many months while I waited under the public system. He was really lovely, explained a lot and helped both me and my partner to feel much more confident.
He disagrees with the preliminary CHF tag but is pushing for more definitive tests as soon as possible, plus a sleep test. This makes me feel so much better in my head and in some way, has also flowed on into my physicality. The cardio doc said "no" to ACE inhibitor and beta-blocker meds at this stage, but said to take aspirin, keep the nitro spray on hand and continue to trial the diuretic. Oh, and of course, to see a dietician!
For myself I am now extending my research to look at pulmonary hypertension and peripheral (legs) vascular problems (some family history here). Greetings to all. Joy. firstname.lastname@example.org
Alexandra's August 30 reply to Hal's August 28, 2004 - Hi Hal, I am so sorry to hear of your financial situation. Have you looked into any state or federally funded programs? There are a lot of programs out there that no one knows about, which may help with electric bill payments, phone bill credits and heating grants from the state. It varies from state to state, but I would go to the Department of Social Services (Welfare) and explain your situation and ask about any and all possible programs to help you out.
Also, contact all the drug companies for their assistance programs. I have no insurance right now and my meds were running alomost $600 per month. I was approved for the GlaxoSmithKline Bridges to Access Program and now my Coreg, Wellbutrin nad Lanoxin is $10 each for 2 month's worth. That is a huge savings. Do research on your computer. I got all the info for the programs off this site and what a Godsend. I am almost approved for all the programs for all my meds, except 2 (I take 12). My husband just got a job with benefits, so hopefully I will not be excluded for any period of time. Usually group plans just take you on, but some have waiting periods for pre-existing conditions. That's insurance for ya!
Don't be embarrassed to take advantage of any governement assistance program. I may be only 34, but I have worked ever since I was 15 and I have no problem taking help if I need it. We were even offered a complete Thanksgiving meal to take home and cook one year. I was going to my sister's so I said no, give it to someone who really needs it. Hopefully, things are beginning to look up for us financially. I hope your situation improves soon too. Good luck, God bless and I hope this info helps. Peace, Alexandra. email@example.com
Elka, August 30, 2004 - Hi everyone, I've been reading some of the posts that discuss diet and cholesterol. It may be good to have a balanced diet that has you eating more unsaturated fats (thought to boost good cholesterol) and less saturated fats (thought to boost bad cholesterol) and exercise 45 minutes 3 to 4 times a week at least, but I think we all have to remember that genetics plays a role. There are some people, no matter what they do, who will naturally make cholesterol more than the average person. After all, cholesterol is made by your body and to some degree diet makes no difference. I'm not suggesting eating a whole lot of bad stuff for you, by the way. <g>
However, if you are a heart transplant recipient, the anti-rejection medications will boost cholesterol levels for bascially all recipients and so it is important to do everything possible to keep levels down as much as possible. If people do have problems with blood cholesterol levels, there are medications available. I've found that foods such as avacado, nuts and dark chocolate are helpful in boosting HDL levels. Of course, because these foods are rich in fat, those trying to maintain weight shouldn't overindulge in them. firstname.lastname@example.org
Jon's note: Good point that heart recipients have huge problems with cholesterol. They should strictly stick to whatever works for them!
Bill's August 30 reply to Jon's August 27, 2004 - Hi Jon, My daughter already tried that. If she would have cut my hair any shorter I wouldn't have any eyebrows left. email@example.com
Jon's note: <lol>
Mike, August 30, 2004 - Hi, I live in Burbank, California. Are there any good CHF specialists close by? I've already checked the referral page. I also know of one at Cedars Sinai, but I wanted to see about others. MikeBarco@Pacbell.net
Mike, August 30, 2004 - Hi, Everyone, please don't forget about EECP as an option for your heart failure. Go to EECP.com. Good luck. MikeBarco@Pacbell.net
Marty, August 30, 2004 - Hello everyone, As a long-time reader of your posts on this wonderful site, this is my first, long overdue post. I first learned of the site about four years ago when Randy, my younger brother, had DCM and CHF. He was always talking about the stories he read from all of you and he was so often encouraged to know he wasn't alone in the struggle. In December of 2002 at 40 years of age, Randy died from complications that came from implanting an LVAD. He never regained consciousness after the surgery. His condition had simply deteriorated too far for his body to handle the surgery.
He lived in rural Maine and he was just too far away from the care he needed until the end. I miss him so much, and watching him go through all that he did tore me up. Since my father also had DCM, it was recommended that I have an echo just to be cautious. It showed Left Bundle Branch Block but no other problems, so they just gave me Lopressor to take as needed when I was having palpitations associated with the LBBB.
Three months ago my annual echo showed not only LBBB, but a markedly decreased EF of 37% and "moderate" enlargement of my left ventricle. I felt like a person who watched someone they loved die of a poisonous snake bite, only to have that same snake bite me. I aggressively pursued treatment and my adventure began.
I'm in the Air Force as my brother was, so my treatment options are in some ways limited, but in other ways a blessing. The cardiologist I saw contacted the folks who took care of my brother at Brigham and Women's Hospital in Boston and had his autopsy faxed here to Texas. He scheduled me for an immediate cardic cath and also suggested putting an ICD in, purely due to family history and risk. I've had no arrhythmia. Some would question putting an ICD in a relatively asympomatic 43 year old, but I agreed with aggressive action. I don't want to die. I have a wonderful family and a wonderful life, along with two new grandchildren. They put the ICD in two days after the cath showed absolutely no CAD. The doc said I have "beautiful arteries."
Before they put the ICD in, they told me of the limited risks, said less than 1% have problems with this procedure. I'm part of the 1%! The day after they let me go home from the hospital, I went to the emergency room because I couldn't breathe. They'd punctured my heart with one of the leads and I was experiencing something called pericardial effusion. I almost died. My blood pressure was so unbelievably low they couldn't use any anesthetic and had to cut into my chest to release the blood from my pericardium. They went in four times before they got it. I was in the worst pain I could ever imagine and was struggling to stay conscious, vomiting, and praying aloud. I begged God to help them get this done, and He answered. On the fourth try, blood spurted from my chest when they finally hit the right spot, and suddenly I could breathe! It was so surreal. I was still talking with them at this point, thanking them, thanking God, and just so relieved. God was with me. I felt His presence in that room like no other time in my life. So many friends and family were praying for me, I believe God answered.
That was two weeks ago. Now I'm adjusting to the increased Coreg dose they have me on. I am still only at 6.25mg twice per day along with Altace, but I'm making progress. I want to ask all of you about all the bizarre sensations I keep getting in my chest. I was mostly focused on the very sharp pains in my left shoulder associated with the ICD being put in twice within a week and 4 visits to the cath lab in 5 days.
That is passing and now I'm feeling more of a pain in the center of my chest when I take big breaths. I also tend to see stars whenever I stand up from a chair or bed, and I'm pretty tired a lot of the time. I appreciate anyone who has taken the time to read all this and I covet any advice you can think of for my situation. All of this is especially hard for me since I watched my younger brother go through so much. He was a much less compliant patient than I am and was diagnosed much further down the line due to his refusal to go to the doctor until his heart was failing so badly he couldn't sit down. He also refused to take his medicine as prescribed, due to the side effects.
At the end, he told me what a mistake he'd made, and how much he wished he could have another chance to get help sooner and follow the doctor's orders. I want to learn from him and live to see my grandchildren grow up. Jon, I want to thank you from the bottom of my moderately enlarged heart for your unbelievable efforts on this site, and the encouraging testimony you are to all of us. I hope I can be a help to someone else at some point as you have been to me. God bless you all. Marty. firstname.lastname@example.org
Jon's note: I hesitate to mention the obvious, but how is your blood pressure?
Clara D, August 30, 2004 - Hi everyone, When I learned I would have to drastically limit sodium in my diet I went back to baking bread in the oven. Now I've been given a Breadman bread machine, which I'm sure will make the task easier. My problem is that bread rises so much more quickly without salt that I'm afraid I'll have dough oozing out of the machine.
I'm sure someone out there has solved this problem. I would greatly appreciate it if you would share your experience with me. Perhaps it's just a matter of watching the process and adjusting the time, or using less yeast or cooler liquid. What works for you? I guess I should start experimenting but I can't seem to get beyond the stage of reading bread machine books and staring at the machine!
Also, I'm always looking for good whole grain recipes, especially those with nuts and-or fruit or something to replace the flavor that salt gives bread. Thank you. Clara D. email@example.com
Carla's August 30 reply to Bill's August 27, 2004 - Hi, I love this site! Thanks for bringing up about the hair, since I thought I was losing my mind. Here lately, I've been so tender-headed and I've never had a problem before as I'm always in the salon doing something different. However, I've also noticed a lot of static electricity and it's summertime! I'm glad I'm not the only crazy one. <lol> firstname.lastname@example.org
Madeline, August 30, 2004 - Hi, I am glad to have stumbled upon this site. I was diagnosed with "severe cardiomyopathy" in April of 2004. They did a heart cath in May and found no blockages. The cardiologist immediately put me on a handful of meds. I went back 2 weeks ago for another echo and lo and behold, there was no improvement. My ejection fraction still 15%. I am taking digoxin, Lasix, spironolactone (Aldactone), and Coreg 12.5mg twice a day. Also added to the mix and to keep life more interesting, I have left bundle branch block. I am working every day and feel mostly fine. I am a little more tired at night since the increase in the Coreg dose.
My cardiologist sent me to another doc last week to discuss a biventricular pacemaker. The way they talk, I don't seem to have much choice. I am looking for input from anyone, especially those with a similar experience. I don't know what caused my cardiomyopathy. I have no family history of CHF. The docs say maybe a virus caused it. I can't help but wonder if I am in this bad of shape, how can I be working? Last year at this time I was, or at least I thought I was, fine. Any help or conversation would be really appreciated. Thanks, Madeline. email@example.com
Jacky, August 30, 2004 - Hi, I stopped taking Lipitor two weeks ago hoping to help with weak legs and arms, not all the time but mostly stairs and walking after sitting in the car, and my arms when I do anything above chest height. My doc doesn't think Lipitor is really the problem and recommends I see my PCP. I am loathe to do this because it is bound to mean tests, which I cannot face at the moment. Nothing has changed since I stopped Lipitor. How long would it take for the side effects to stop? Does anyone have any ideas about this weakness? A new doc says it isn't the cardiomyopathy, although the old one (he moved) gave me the impression it was. firstname.lastname@example.org
Kim, August 31, 2004 - Hi, I'm new to CHF and curious about my latest cath results. If anyone would care to add their insights based on experience, I would be grateful. First, I'm a 37-year-old female who had her third and final child last year. During the pregnancy, I developed many symptoms similar to heart failure (after two easy pregnancies) but my systolic function was still considered normal given the pregnancy. I surpassed the normal limits of heart chamber sizes and was originally diagnosed with peripartum cardiomyopathy. Subsequent tests showed a high but still within normal limits left ventricle and right atrium dimensions.
A year later in June, I had a cath with ergonovine at the CCF to try and trigger a coronary vasospasm. I've been having atypical chest pain since the second trimester of last year. My coronary arteries were clear and the cardiologist couldn't detect a spasm although I had a severe reaction to the ergonovine. I felt like I was having a heart attack and the pressures inside my heart skyrocketed.
The cardiologist suggested that it was an esophogeal spasm and prescribed Norvasc. Two months later on the calcium channel blocker, I'm experiencing no chest pain but feel very tired. I've had GI tests which were 100% normal. My PCP has suggested that my reaction to the ergonovine was global and that I need to keep taking the CCB to protect my heart muscle. Anyone care to shed light on what global means?
The cath revealed a 50% ejection fraction and 16 degree pressure on my LV. The cardiologist suggested that I have an echo to explore valve disease. I did, and the test revealed mild aortic sclerosis and insufficiency with trace tricuspid insufficiency. My LV is approaching max. I also had pulmonary function tests which revealed mild asthma.
Since the pregnancy, I've awakened with some kind of sleep apnea and can no longer run long distance although I've lost all of my pregnancy weight and walk or rollerblade or bike regularily. Afterwards, I have to lie down for a bit. Am I in early heart failure? I think I may be. Am I crazy? Thanks. KimCaroline@aol.com
Don C's August 31 reply to Edward's August 27, 2004 - Hi, The atrium controls the electrical impulses that make a heart beat. When you have a transplant, the majority of your atrium remains intact. The new heart is sown into your existing atrium. That is what keeps the new heart beating. That said, the new heart beats much faster than the old heart, and not just because it is new and working. You have two sets of nerves that connect to your heart. One set speeds the heart up, and the other slows the heart down. This is why your heart beats fast if you are excercising or if you are startled. When you are resting, the nerves slow the heart down because it does not need to pump as much blood during rest. When you undergo a transplant, these nerves are severed, and they are not reattached during the procedure. Your heart now responds to the adrenaline in the blood stream when it needs to beat faster. I hope that answers your question. email@example.com
Don C's August 31 reply to Mike's August 30, 2004 - Hi, By far the best CHF doctor in the area is located at UCLA. His name is Greg Fonarow. They also have an outstanding transplant center which is headed by Dr. Hillel Laks. The post-transplant center is run by Dr. Jon Kobashigawa. Dr. Jigesh Patel is the co-director of the center and was my doctor pre-transplant. I was cared for by both Dr. Patel and Dr. Jon post-transplant. Excellent facility and excellent physicans. firstname.lastname@example.org
Lori K's August 31 reply to Jacky's August 30, 2004 - Hi Jacky, My mother was on Lipitor and had muscle weakness. It took a few months for it to get better, but it did. My husband had muscle weakness from Lipitor and it took him only a few weeks to get better. The docs switched both of them to Crestor and neither of them has had a problem since. Crestor is supposed to work as well as Lipitor with a much lower incidence of muscle weakness. Just to let you know, I get bouts of strange muscle weakness which last for a few weeks on and off since I have had CM. It seems to hit my thighs and my arms (lifting above my shoulders) mostly. So if going off Lipitor doesn't help, it may be your heart or something else. Take care. Lori. email@example.com
Ron, August 31, 2004 - Hi everybody, I was diagnosed with DCM in June of this year with an EF of 15%. I am constantly yawning. Is anyone else experiencing this? Thanks. firstname.lastname@example.org
Mary Anne, August 31, 2004 - Hi, I have CHF but do pretty well. I had a 3-way CABG in 02/2000, artificial mitral valve, and controlled high blood pressure. I do cardiac rehab twice a week, including light weights. Any opinions on doing sit-ups, ab crunches, reverse crunches? email@example.com
Jon's note: For what it's worth, I rotate leg raises, crunches and old-fashioned sit-ups.
Marty's August 31 reply to Jon's August 30, 2004 - Hi Jon, You asked about my blood pressure and I'm very interested in your thoughts on it. Prior to starting Coreg and Altace I averaged around 125/80. The past two weeks, after 6 weeks of Coreg, I average about 110/60. Do you think I'll have problems getting all the way up to 25mg or higher per day?Thanks and God bless. Marty. firstname.lastname@example.org
Jon's August 31 reply to Marty's August 31, 2004 - Hi Marty, No I don't think so. Your current blood pressure is roughly what my doc wants mine to be all the time: About 100 over 70. Seeing stars when you stand up is classic postural hypotension, meaning that you suffer very short episodes of very low blood pressure depending on how you move. This is not unusual with Coreg dose being raised and usually goes away. It probably will stop within a month after reaching target dose. I am a little surprised that a BiV pacemaker/ICD wasn't implanted instead of an ICD since you have CHF and LBBB. Has this been discussed? What's your QRS interval on EKG? Jon.
Bryan's August 31 reply to Madeline's August 31, 2004 - Hi Madeline, I thought I'd give you some feedback on the biventricular pacemaker. I had one including ICD implanted in May this year (4 months ago) and I highly recommend it. I'm 31 years old with adriamicin-induced dilated cardiomyopathy diagnosed back when I was 20 years of age.
My ejection fraction varies from 12 to 30% depending which year you get me in. I'm on the usual digoxin (Lanoxin), Lasix, coreg, warfarin, and coversyl. I just come off amiodarone (hated it) and spironolactone (Aldactone). The pacemaker has made a big improvement and has helped with my bradycardia and low blood pressure. Unfortunately, it doesn't stop my atrial fibrillation from recurring, which it just has (knocks me about) but the old cardioversion fixes that.
When I'm not in a-fib the biventricular pacer makes me less breathless and less tired, which is really great. I haven't had my ejection fraction checked since its implantation so I can't comment on any improvement with that, however the synchronisation of the ventricles and atrium definitely helps out with CHF from my experience. email@example.com
Donna H's August 31 reply to Scott Brown's August 18, 2004 - Hi, It's so good to have the board back up and running. I hope you know how much we appreciate you, Jon.
Scott, I agree with all the points you made in your posts. So far this summer my husband has been in the hospital about 45 days. The latest problems with failure came about because of several factors. Probably the biggest problem was that he was an outpatient and we were having to stay in a motel for a few days while he had tests. This was right after havng his teeth pulled so in addition to having to eat food with more sodium than usual, he also was consuming a more liquid diet than normal.
Currently he is on 160mg of Lasix daily and is restricted to about a liter of fluid per day. This seems to be keeping failure at bay for the time being. He is still testing for heart transplant. The last two tests of the first round are scheduled for the end of September. They are a left heart cath and a CPX test. He has had several right heart caths but never a left heart cath and never a CPX. Is there anyone else here that has never had a CPX test? From reading this board, I knew what it was but the cardiology nurse has never seen one performed. They do have the equipment though.
He isn't looking forward to either test but the CPX has him worried because of the treadmill. I would be interested in hearing other folks' experience with this test. firstname.lastname@example.org
Jon's August 31 reply to Donna H's August 31, 2004 - Hi Donna, It varies a lot from person to person, but my experience was okay with the CPX (Voxmax) test. Depending on what shape you're in, it really doesn't last long. Just tell him that if he thinks he is going to fall, step off the treadmill regardless of instructions. A fall is not good. My only real gripe was the dry throat from breathing through my mouth for the whole test. Jon.
Jack D's August 31 reply to Jacky's August 30, 2004 - Hi Jacky, Your doctor is an idiot. Your problem is the primary problem with statins. Even the manufacturers of Lipitor know all about it. Statins keep your body from manufacturing the CoQ10 that it needs. Once upon a time the Lipitor people were manufacturing a pill with CoQ10 to counteract the problem but they gave it up. The FDA knows it's a major problem and even a few doctors who have some semblance of gray matter know about it. Dr Peter Langsjoen even claims that he is treating a lot of new heart patients with problems caused by the indiscriminate use of statins by doctors who have very few brains. CoQ10 should help the muscle problems but only a few years of remedial reading will help your doctor. email@example.com
Myrtle C's August 31 reply to Bill's August 27, 2004 - Hi Bill, Just a thought about the hair hurting. I have a seberroheic dermatitis condition (not to be confused with "Seborrheic Keratoses"). This condition is an inflammation of the upper layers of the skin, causing scales on the scalp and face, near eyebrows for the most part. Mine breaks out whenever my immune system is low due to some type of health problem. My scalp becomes tender, even painful, especially when I haven't washed it well and used a comb to get all the "scales" removed. Just touching the hair causes the pain as it travels down to the scalp. I use an over the counter selenium sulfide or salicylic acid to control it. I hope this helps. At least no one should laugh at you. <g> firstname.lastname@example.org
Myrtle C, August 31, 2004 - Hi, Just a warning to others if your doctor increases your potassium, get a blood test before increasing it. I had a major problem. My doctor increased my Lasix from 40mg to 60mg and doubled the potassium. I felt weak, nauseated, and headachey. I checked my Pill Book and PDR paperback. I called the office (this was on a Thursday) and he wouldn't be back until Monday. The nurse practitioner had me get a test and that was delayed getting to the office. By this time my kidneys began hurting and I discontinued the potassium completely. I am now back on the lower dose and feel okay but it took almost 3 weeks. Doctors! email@example.com
Roger's August 31 reply to Clara D's August 30, 2004 - Hi, I have a Breadman Ultimate and have baked a loaf of bread every week. The recipe I use is in the order I put them in is : 2 T splenda, 2 T olive oil, 2 T molasses, 1-1/4 cup warm water (1 cup best for bread flour), 1-1/2 cups + 2/3 cups of whole wheat flour, and 1 packet of regular yeast. I set for rapid white, a 1-1/2 lb loaf with light crust, and it takes one hour and 55 minutes. This has just a little over one mg sodium per slice. I take a few slices to work sometime and everyone loves it. I have experimented some and this is what I came up with. I hope you like it. firstname.lastname@example.org
Bill's August 31 reply to Carla's August 30, 2004 - Hi Carla, Thank you and everyone else that had something to say about the hair problem. It's amazing and also nice to know none of us are alone in anything. Thanks a lot, everyone! email@example.com
Paul D's August 31 reply to Carla's August 30, 2004 - Hi Carla, You may want to get hold of the "No-Salt, Lowest Sodium Baking Book" by Donald Gazzaniga. He's spent a lot of time adjusting recipes and figuring out work-arounds for making flavorful breads and other baked goods. He makes using a bread machine easy for us. I've had good success with his recipes. He has a web site where you can read about his books at www.megaheart.com. firstname.lastname@example.org
James' August 31 reply to Madeline's August 30, 2004 - Hi Madeline, If your docs recommend a BiV pacer, I say go for it. I was in a very similar boat to yours, with an EF down to about 20%, LBBB, enlarged heart, and so on. In my case, we had no idea why it had occurred (viral, heart attack, whatever) and the condition was worsening. The doc told me BiV pacer, transplant, or... I can of course read between the lines. Unlike you, I was suffering a lot of shortness of breath and was actually quite incapacitated much of the time. I did still manage to do lots of stuff I wasn't supposed to do, but as time wore on that happened less and less.
We went forward, of course, and I was made a member of the Borg collective on 10/31/2003 (yup, Halloween - a fitting day to be Frankensteined <g>). The procedure was no biggie overall (read my bio for more) and recovery was a bit longer than they said it would be but survivable.
A few weeks ago I had a regular follow-up with my cardiologist. My EF is now rated at 40 to 45% via echo, heart sounds are significantly better, and my heart size is down to 6cm from 6.5cm just before the implant. I'd call that a positive response. :-) My cardiologist is absolutely giddy at how well my heart has responded to the device. I've had less shortness of breath and can be more active than way back. So, as I mentioned, I say go for it. email@example.com
James' August 31 reply to Clara's August 30, 2004 - Hi Clara, Baking without salt is a bit tricky at first but you'll adjust quickly! :-) First off, hit www.healthyheartmarket.com for low sodium foodstuffs. Among those you will find two that you'll want to add to your pantry: Featherweight Baking Powder and enerG Baking Soda. You will not need these for bread of course but you'll want them for other baking, such as cookies.
Now, as to the bread rising issue - bread uses yeast to rise. The salt controls the rate at which the yeast grows so it will not puff your bread up too quickly. If you drop out the salt, you'll have to cut back on the yeast. I typically make a 1-1/2 pound loaf and I use about 1-1/2 teaspoons of yeast and no salt. It works great. Here's my stock bread recipe. If you leave out the powdered dry milk (I always do) you'll get a loaf with about one mg of sodium per slice. I'll also drop you a line off-board with information of use on this and other low sodium topics.
Add ingredients to bread machine pan in the order listed above. Cut butter into 4 pieces and place in 4 corners of pan. For yeast, make a small well in center of flour and pour yeast in the well. Select basic/white bread cycle, 1.5 pound loaf, your choice of crusts. Yields 12 servings. firstname.lastname@example.org
Dorothy, August 31, 2004 - Hi, I am a 56-year-old female who was diagnosed with CHF in April, 2001. I hope that sharing some of my experiences will help others as they search for answers. I went for my annual physical in 1997 and was shocked when my doc told me she was making an appointment for me to see a cardiologist because my EKG showed a change from 1996. I was diagnosed with Left Bundle Branch Block. The cardiologist just waved his hand and said that explained the EKG change and not to worry about it.
Four years later I was very worried after spending 5 days in the hospital and being told I was a perfect heart transplant candidate. My diagnosis was an EF of 24% and severe cardiomyopathy. I assured the cardiologist he could put the heart transplant idea at the bottom of his list. Fortunately, I could take the heart meds with very few side effects.
I had a stroke in 1994 while having brain surgery for a compressed nerve and really was not willing to learn what would happen to my body if I agreed to a heart transplant! Despite dire predictions by my cardiologist, I exercised regularly and my EF had doubled to 48% by February of 2003. He assured me I was one of a tiny minority of CHF patients who improved! Jon, I have suggested to both my internist and cardiologist that they might benefit from reading your site! (Jon's Note: It seems lots of doctors, including specialists, are waaaay behind the curve on how well a CHFer might do if treated properly!)
A friend who had chest pain and had 3 stents had quite an experience with anemia. Despite a healthy diet, his body didn't have enough iron. He takes B-12 shots on a regular basis and his doc monitors his blood levels. He was 56 when diagnosed and was relieved to find a reason for his extreme fatigue. Just showering and getting ready for work took him several hours. He had always had stamina and the fatigue was hard for him to deal with. He kept going back to the ER and heart docs trying to find a reason for his problem. He tells me he now feels great and his energy level is normal again. Best wishes for good days. DPowell806@aol.com
Ron's August 31 reply to Madeline's August 30, 2004 - Hi, I also have left bundle branch block and was diagnosed with DCM in June of this year with an EF of 15%. The cardiologist thought it was caused by a virus. I'm on Coreg, Mavick and Pravachol. Other than being more tired, that is the only symptom I exhibit.
From the reading I've been doing and the great info on this site, I believe that my organs are compensating for this heart damage and the toughest part is waiting for the other shoe to drop (i.e. getting much worse). Having said that, I'm extremely hopeful that the meds and minor life style changes will at the very least stabilize my condition. I was told that I had a one-third chance of getting better, a third of getting worse and a third of remaining the same. I pray that everyone on this board is in the group that gets better. Hopefully, this information will make you feel that you're not alone. Good luck! email@example.com
Steve Martin's August 31 reply to Donna V's August 27, 2004 - Hi, I had s biventricular pacemaker/ICD implanted about 2-1/2 years ago. My EF was 29% and my prognosis was very poor. I was deteriorating rapidly. The BiV pacemaker has changed everything. My EF is now 60%. My doctor says this is a remarkable improvement. Coreg treatment was started about the same time so my heart improvement could be a result of both. I still don't feel completely normal even though my EF is normal but it looks like the old ticker will last a lot longer. All in all, we're all very satisfied. firstname.lastname@example.org
Tod, August 31, 2004 - Hi everyone, I would like to introduce myself. My name is Tod and I have CHF and DCM. I'm 22 years old and was told by my cardiologist that my CHF and DCM was caused from a viral infection. I was diagnosed with these illnesses on March 5, 2004. I just recently been pre-approved for SSDI and SSD. The state office approved my case but it had to be sent to the regional office to check the state's work. Being preapproved, I am eligible to receive the SSDI right away and I will receive 2 months back pay but once my SSD starts up I will no longer receive the SSDI.
My question is, once I start receiving my SSD will I still be able to get Medicaid? This is something that concerns me since it's the SSDI that qualifies me for Medicaid and they said it only takes up to a week or 30 days for the regional office to review my case and make a decision on the SSD, which I'm pretty confident will be approved.
All this means that I will probably only have SSDI for a month. All of this is confusing. When I applied I didn't have to do any paperwork, I just went down to my SSA office and a worker entered my info into a computer. They told me I would have to be seen by one of their doctors, which I never had to do. Right now I'm trying to do all the reasearch I can at my state's health care site but if anyone has any advise or info they'd like to share, please let me know. By the way, cool site. email@example.com
Bill's August 31 reply to Myrtle C's August 31, 2004 - Hi, Thank you for sharing your hair pain. Normally it wouldn't be funny to have painful hair, but with all the other miseries we live with it is nice to have one ache that is kind of funny, at least to me. Thanks again. 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 Jon C.