The paperwork never ends The Archives
October 16-31, 2001 Archive Index CHFpatients.com

Karen 10-16     end-stage, liver & kidney questions
 
Jon's 10-16 reply to Karen's 10-16     end-stage, liver & kidney info
 
Jon 10-16     low EF & ability to function
 
Scott Brown 10-16     intro, transplant questions, seek familial cases
 
Bill B 10-16     stumped on SSD process, prayer request
 
Jeanette W's 10-16 reply to Herbert's 10-12     good Coreg experience
 
Donald N 10-16     questions about lung disease & heart failure treatments
 
Harriet Schuler 10-16     seek CHF doc in North Carolina
 
Luc D 10-16     hi to everyone from Belgium
 
Janet 10-16     intro & some questions
 
Ben B's 10-16 reply to Jon's 10-16     mechanisms that compensate for weak heart
 
Sherrell G 10-16     prayer request
 
Patrick M 10-17     need insurance help, info
 
Jon's 10-17 reply to Patrick M's 10-17     I hope other also reply
 
Fred D's 10-17 reply to Bill B's 10-16     an SSD attorney may help
 
Luc D 10-17     thanks for the e-mails & more
 
Melissa H's 10-17 reply to Pam's 10-12     PPCM experience
 
Brandy 10-17     PPCM site
 
Joseph P 10-17     implanted device lead question
 
Frank Smith's 10-17 reply to Donald N's 10-16     doctors, balancing everything
 
Bill D's 10-17 reply to Janet's 10-16     that kind of Coversil & statin drugs
 
Bill D's 10-17 reply to Patrick's 10-17     beta-blocker info
 
Sharon P's 10-17 reply to Patrick's 10-17     beta-blocker cost in southern California
 
Ruthie A's 10-18 reply to Patrick's 10-17     cost of meds
 
Joe S' 10-18 reply to Patrick's 10-17     cost of living with CHF
 
Joe L's 10-18 reply to Jon's 10-16     EF really isn't the greatest indicator
 
Darlene 10-18     intro & more
 
Ben B's 10-18 reply to Joe L's 10-18     calcium channel blockers & diastolic dysfunction
 
Jon's 10-18 reply to Ben B's 10-18     choice of calcium channel blocker with CHF
 
Tracey 10-18     update on Sherrell Gay
 
Jon 10-18     chat room question
 
Sharon P's 10-19 reply to Jon's 10-18     price of Toprol-XL co-pay
 
Joshua 10-19     seek InSynch pacemaker experience
 
Tracey C 10-19     what is ACS on echo report?
 
John Len's 10-19 reply to Ruthie A's 10-18     financial help from drug makers
 
Lee R's 10-20 reply to Joseph P's 10-17     ICD experience
 
Scott's 10-20 reply to Joshua's 10-19     pacemaker implant
 
Jon 10-20     InSynch pacers
 
Tracey C 10-22     seek low sodium stuffing recipe
 
Pat Latimer's 10-22 reply to Joshua's 10-19     InSynch pacemaker experience
 
Jana B's 10-22 reply to Patrick M's 10-17     MediCal and health insurance suggestions
 
Jon 10-22     just a note
 
Ruth P's 10-23 reply to Luc D's 10-17     update, lots of changes
 
Herbert L's 10-23 reply to Tracey C's 10-22     salt-free stuffing
 
Tracey C 10-24     startling update on my last echo experince
 
Jack D's 10-24 reply to Tracey C's 10-22     low sodium stuffing suggestions
 
Jim R's 10-24 reply to Tracey C's 10-22     low sodium stuffing suggestions
 
Skip 10-24     sometimes it's more than I can handle
 
Sox Nelson 10-24     seek site like this but for liver cancer
 
Pam 10-24     irregular heart beat, herbs, thyroid & more
 
Donna 10-24     diastolic dysfunction - what do I ask my doc & more
 
Jon's 10-24 reply to Donna's 10-24     I hope others also reply
 
Sid K's 10-24 reply to Pam's 10-24     taking alternative supplements for CHF
 
Ginger's 10-25 reply to Pam's 10-24     taking supplements, irregular heart beats
 
Phyllis Alexander 10-25     will try to post more often
 
Ben B's 10-25 reply to Donna's 10-24     disatolic dysfunction
 
Donna's 10-25 reply to Jon's 10-24     what do I tell people?
 
Jon's 10-25 reply to Donna's 10-25     this one I can't answer & more
 
Pam's 10-25 reply to Ginger's 10-25     thanks, thyroid meds, irregular beats & more
 
Patrick M 10-25     BP measuring questions
 
Jon's 10-25 reply to Ben B's 10-25     diastolic dysfunction meds
 
Jon 10-27     sorry no posts yesterday
 
Donna's 10-27 reply to Jon's 10-25     symptoms were pre-CHF & more
 
Jon's 10-27 reply to Donna's 10-27     please disregard my advice
 
Mark 10-27     thank you
 
Pat M's 10-29 reply to Donna's 10-27     having diastolic dysfunction
 
Jon 10-29     helping get rid of spammers
 
Donna S 10-29     getting into shape got me
 
Mary A 10-29     how am I going to make it?
 
Amelia 10-30     what is diastolic versus systolic? & more
 
Karen K 10-30     update and prayer request
 
Jon 10-30     diastolic dysfunction treatment
 
Davida S' 10-24 reply to Donna's 10-24     diastolic dysfunction treatment
 
Herbert L's 10-30 reply to Mary A's 10-29     anger and stress
 
Diane Page 10-30     how do I handle ER visits?
 
Jon's 10-30 reply to Diane Page's 10-30     some ideas, hope others respond
 
Scott Brown's 10-30 reply to Mary A's 10-29     anger versus sadness, manipulating kids
 
Amelia's 10-30 reply to Mae's 10-30     amiodarone and TEE
 
Marsha H's 10-30 reply to Diane Page's 10-30     good idea
 
Ruthie A's 10-31 reply to Jon's 10-30     diastolic dysfunction experience
 
Jon's 10-31 reply to Ruthie A's 10-31     seek other diastolic dysfunction experiences
 
Janet 10-31     seek others who've been through this
 
Jon 10-31     if your e-mail begins with www.
 
Cherri Olson 10-31     online resources


Karen, October 16, 2001 - Hi, How do you know when you are in the last stages of CHF? Does anyone understand liver edema and kidney failure? osuchagal@aol.com


Jon's October 16 reply to Karen's October 16, 2001 - Hi Karen, "End-stage" CHF is said to occur when maximum drug therapy no longer relieves symptoms. IV drugs are usually the next step, or device implant. Heart transplant is another option for some people.
     When a person has CHF, fluid accumulates in their system, including the liver. This causes the liver to swell, reducing its efficiency and giving you a feeling of fullness, almost like swallowing a small basketball. You can read about edema here. You can also read more at The Manual. I'm no expert on kidney failure but if you ask a more specific question maybe someone here can help you. Jon.


Jon, October 16, 2001 - Hi everyone, An interesting fact about ejection fraction came up in a conversation with my CHF doc yesterday. When your heart is enlarged, you may do better than your low EF would indicate. Why?
     Because EF is a percentage, so if your heart is filled with more blood because it is larger, the percentage of blood it pumps out per beat - the EF - is actually larger than with a normal sized heart pumping at the same EF. It's not a good shape to be in, but it helps explain why some people with a low EF do better than you'd think.
     (these numbers have no relation to real-life numbers - they are just an example!) For example, if your enlarged heart held a gallon of blood (128 ounces) and pumped out 15% of that gallon (a 15% EF), you'd be pushing 19 ounces of blood per beat. If your heart were normal size - say half as big - it would hold 1/2 gallon (64 ounces). That normal-sized heart would need a 30% EF to push the same anmount of blood per beat. So even though your heart was weak and enlarged, with a low EF, you might do better than you'd think. There's always a catch - it wouldn't last. Jon.


Scott Brown, October 16, 2001 - Hello, My name is Scott from Ontario, Canada. I am 33 and suffered CHF in August. My EF is around 17, according to my echo. This was a shock because I was previously very active. I had symptoms for about one month before diagnosis. Originally it was down as asthma, then bronchitis, then the chest x-ray told the tale - a severely enlarged heart. My DCM is almost positively familial in nature. My father was diagnosed with the same 15 years ago. He is still alive at age 60, but he is frequently short of breath, and has survived 5 bouts of pneumonia. Apparently he is not sick enough to be on the transplant list. I would be especially interested in making contact with other people who have a familial connection.
     I'm not sure how the U.S. and Canada compare in heart transplants but did anyone else have to argue about getting on the list? My dad can only walk short distances like from the bedroom to the washroom. He could not leave the house without a wheelchair. Many days he stays in bed because he does not feel well enough to get up. He is not likely well enough to take a cycle test. All other tests have been performed and his other organs are normal. I had heard of other people at 60 years old getting transplants. I fear that if he waits much longer he will be considered too old. His brother died of CHF in his 40s.
     I think our cardiologist in on his side, but it is the transplant team that makes the ultimate decision. If my dad can make it up the stairs, he has to sit on each stair and climb one step at a time in the sitting position. Has anyone had any luck in appealing a decision? How bad does your quality of life have to be before you can make the list? Sometimes you can wait a few years for a transplant and I don't think it is good to wait until the last minute. Your thoughts are appreciated. Thanks, Scott Brown. kitchenerguy@hotmail.com


Bill B, October 16, 2001 - Hi all, Just a note about the SSD hearing. All my info was there. The SSD doc says I am too sick to work, the SSD shrink says I can't work, the rehab expert says the same. However, the judge does not agree. I have 3 weeks to get more evidence to support my case. I don't know what else I can provide. With the evidence presented, it should have been a done deal. I ask for your continued prayers and I thank you all. Thank you God, for these fleas. God bless, Bill B. fedx44@yahoo.com


Jeanette W's October 16 reply to Herbert's October 12, 2001 - Hi Herbert, I have taken Coreg for 3 years 4 months. I started out at 6.25mg twice a day and am now at 12.5mg twice a day. I can honestly say that being on this drug has benefited me 100%. My EF has gone from 20% to 35%. I have been on it since being diagnosed with DCM back in July of 1998. I also take Lasix and zestril. Without Coreg, I believe my EF would have stayed the same or become worse. My cardiologist says it's one of the best beta-blockers around, helping the heart and lowering blood pressure. There are a few side effects but they are minimal compared to the positive results favored in the drug. I will put up with the side effects because the benefits outweigh them. If you have any more questions, please feel free to ask me and I will help you any way I can. Take care, Jeanette. jeanette841@yahoo.com


Donald N, October 16, 2001 - Hi, I've been reading all the posts for 4 years now but I have not seen many COPD/CHF patients. Why is that? In cardiac and respiratory rehab classes they say one often leads to the other condition. My second question is, if lung meds are harmful to heart failure patients (like albuteral is), and some heart meds are harmful to lung disease patients and others to kidneys, how can we as patients determine which is main disease to be treated and how can we balance all these meds? The answer is not, "Leave it up to your doctors." We have learned we must always be on guard about meds. Finding medical knowledge is confusing because no one agrees on which meds can be used with other meds. This site is such a blessing. Thank you, Don N. jdhudson@webtv.net


Harriet Schuler, October 16, 2001 - Hi, I live in North Carolina close to Winston-Salem. Does anyone know of any CHF specialists near me? I presently go the Wake Forest/Bowman Grey School of Medicine to a Dr. Robert Applegate. Any comments or advice would be a great help, or a web site address for the information I need.Thank you, Harriet. schuler190@aol.com


Luc D, October 16, 2001 - Dear Friends, I just want say hi to all of you here at the Jon's heart forum. Most of you will not know me but I'm the Belgian Luc. You can see who I'm at the Who's Who site. I still look at the message board every day but I don't know what to write any more. Most of the people who were here in 1997 are gone or died. I just have to say this, that I'm still very glad that Jon has done all he can to make this site for all the people like us who have a heart disease. If someone wants to write me, please do. I'm always here to talk, Luc Deseins from Belgium. luc.deseins@planetinternet.be


Janet, October 16, 2001 - Hi everyone, I've been going through all the posts. They are great. Now I'm asking for some advice. I have CHF and suffer from nausea every day. When I sit down it's not as bad. I had gallstones and the doctors thought it might be what was making me feel so sick so they removed my gallbladder. However, I'm still nauseous, even worse. I was wondering if it is my medication doing it since I'm on 10 different tablets. There is one other thing I would like to ask. When I was in the hospital the nurses couldn't believe I was on 8mg of Coversil Preindopril. Does anyone else take this? I am really getting down with feeling sick all the time. Any advice would be very appreciated. Thank you, Janet. wjanet@hotmail.com


Ben B's October 16 reply to Jon's October 16, 2001 - Hi, This was a theory I thought about awhile ago. Plus, combine this with the fact that most people with CHF are on a beta-blocker which slows the beating and you have a double whammy - lower volume per beat and fewer beats per minute means less blood altogether. It has to be true to some extent because this enlargement and speeding up of the heart beat are both part of the body's natural means of fighting a weakened heart.
     While I still believe these theories may be true to some extent, they have a slight flaw. A person with an EF of say 10% would have an EF 1/6th of normal. However, I don't think anybody with an EF of 10% has a heart that is 6 times larger than normal! I'm not saying there's no validity to it; probably that it may account for only some of the low EF patients feeling good phenomenon. There have to be other reasons, which you have elucidated in the past. Lucky for me I feel a lot better with a smaller heart and higher EF. I know this is not true for you and many other people. bdbrinkman@juno.com
 
Jon's note: Yeah, the tricky part is: when does a compensatory mechanism swing too far and start causing harm? It always happens, but at different points in different people.


Sherell G, October 16, 2001 - Hi, This is a request for your prayers. I go to the hospital tomorrow to have my ICD replaced. My case is more complicated than normal due to the current placement under my breast. The unit is in a dacron pouch sewn to my chest wall muscle; but apparently after 5 years, the stitches are giving way because the device is moving around. That one will come out and a new, smaller one will be placed in the normal spot on the upper chest. It will be done under general anesthesia instead of the more common conscious sedation. Jon, thanks for the updates on the devices pages. tonygay@worldnet.att.net


Patrick M, October 17, 2001 - Hi, Can anyone help me?! I have been on my county's medically indigent services program for the past year and a half, and now they are making me get Medi-Cal. Medi-Cal says I have to pay them a shared cost of $525 a month! My SSD is only $1145 a month so that leaves me with only $600 which will just barely pay my house payment and utilites, leaving zero money for food! (or other things) This will put me below the Federal Poverty Level, which is $8765 per year for a single indivdual.
     All my CHF meds come to $265 a month and my asthma meds come to $208 ($473 total) which means in the months that I don't go to the doctor, they will be making money on me. I feel certain that I could get some type of health insurance that would be cheaper than $525 a month so if any of you know of someone who has bought health insurance for themselves I'd appreciate a mail telling me where I can get the same insurance. Is it possible to get insurance with the company knowing that you have CHF?
     Also, if I start buying my own meds and tell Medi-Cal to take a hike, I would like to get the cheapest beta-blocker possible. How much cheaper is Toprol-XL than Coreg, and what dose of Toprol is equal to 50mg bid Coreg? Thanks, Patrick M. NarleyHarleyGuy@webtv.net


Jon's October 17 reply to Patrick M's October 17, 2001 - Hi Patrick, I can only touch on your questions so I hope others also reply. I pay almost $400 per month for my health insurance but I could not get the same insurance without a one-year wait period for CHF-related coverage now. This was allowed without the wait by my labor Union when I got sick and as long as I remain a member (retired), they allow my coverage to continue in full. Whew! I can't comment on California governmentally funded programs because they are the weirdest in the country and their rules are usually unique, sorry.
     I haven't looked up the exact prices lately but last time I did (try Rx-List or a similar site), Toprol-XL was a lot cheaper than Coreg, and I mean a lot. There is no exact "equivalence" in dose, but usually the Toprol-XL target dose is 190mg - see this page for beta-blocker target doses and see my CHF FAQ for target dose info in general. Jon.


Fred D's October 17 reply to Bill B's October 16, 2001 - Hi Bill, If you have not done so, get an attorney that specializes in SSD claims. For some reason they seem to take you more seriously if you went to the trouble to get an attorney. Best of luck. deal@midusa.net


Luc D, October 17, 2001 - Dear friends Sharon and Ben, I would like to thank you both for writing such nice e-mails. I know now that there are still people here from when I found Jon's site in 1997! I do hope that we can stay in touch with other people who have a sick heart and want to talk about the problems they have gone through. I wish all the people here all the best life can give us! Thanks again, Luc D From Belgium. luc.deseins@planetinternet.be


Melissa H's October 17 reply to Pam's October 12, 2001 - Hi, I am new to this site also. I was diagnosed with postpartum cardiomyopathy in September of 1999, three days after the birth of my second child. The last thing I remember before being put on a ventilator was hearing one of the nurses say my pulse ox was 2%. I spent 7 days in the hospital critical care unit, 4 of which I was on total life support and in a drug induced coma.
     Like you, I have searched for info on this condition with not much success. It has been 2 years now and I am doing great! My EF was up to 55% at my last echo (it was 25 to 30% when I was at my worst). I was 29 years old when this happened to me and now I'm 31. I recently returned to work. I was glad to find this site and know that I'm not the only one suffering from this. Don't give up. It takes time. I'm almost completely off my medication now. bobbyhatfield@yahoo.com


Brandy, October 17, 2001 - Hi guys, That old PPCM site is no longer up - Kim quit doing it. However, I have one up and running strong right now. It just hit the web this past weekend at www.geocities.com/ppcmfriend/. It will be moved to its own domain this winter. Please visit! Brandy Lee. TNBLee@prodigy.net


Joseph P, October 17, 2001 - Hello everyone, I have CM, CHF, mitral valve prolapse and an ICD. I felt something in my chest area that felt loose. When I went in for a doctor's visit, the nurse said I had a wire loose connecting to my pacemaker at that time. Is this possible? Since then I have had an ICD installed. joeandol@yahoo.com


Frank Smith's October 17 reply to Donald N's October 16, 2001 - Hi Donald and everyone, Six months after my breech birth (sorry, Mom) I developed allergies and asthma which have stayed with me for all of my 68 years. Long before my heart attack in 1987, which resulted in CM and CHF, I was using albuterol for my bronchial asthma, which turned into chronic bronchitis and eventually COPD. So I have used albuterol for about 14 years since my ischemic cardiomyopathy developed. I can think of all kinds of scenarios for the deleterious effects of albuterol for heart patients, however I still use albuterol because it works very well, and because I am a unique person as we all are. I choose not to allow doctors nor anyone to tell me what I must use in my body.
     Your suggestion that it is a balancing act should always apply, and if we choose to be well-informed and accept the fact that knowledge is power, then what doctors say should only be treated as just another opinion and no more or less than that. My opinion, by the way, is that most doctors are cluless because they could never know my body as well as I do. I truly consider most of them as just a not very necessary evil. :-) Later, Frank. fmsmith@inreach.com


Bill D's October 17 reply to Janet's October 16, 2001 - Hi Janet, I tried to look up Coversil Preindopril but I can't find it anywhere. Maybe you mispelled it? Are you taking a statin drug to lower your cholesterol? The only one I could take was Baycol. All the rest made me nauseous - Zocor, Pravacol, Lipitor all made me sick! Then they took Baycol off the market! Bill D. billdog11@earthlink.net


Bill D's October 17 reply to Patrick's October 17, 2001 - Hi Patrick, My pharmacist told me that Toprol-XL was equal to the old Lopresser except it was extended release. You have to take 2 a day of Lopressor to equal Toprol-XL. Lopressor and it's generic are really cheap! Jon told me there are different compounds but my pharmacy guy told me the only difference was the chemical that made it extended release. I'd check on it before you buy, Bill D. billdog11@earthlink.net


Sharon P's October 17 reply to Patrick's October 17, 2001 - Hi, With my husband's insurance we pay a 20% co-pay for each Rx. My Coreg co-pay is $17.24 and my husband's co-pay for Toprol-XL, each for a 30 day supply. This is through Savon in southern California. Blessed are we when we reach $1000 in prescriptions because then they are free for the remainder of the year. Unfortunately I keep reaching that magic number earlier and earlier each year as additional medications are added. Sharon P. sparker103@home.com
 
Jon's note: Out of curiosity, what is the Toprol-XL co-pay?


Ruthie A's October 18 reply to Patrick M's October 17, 2001 - Hi Patrick, I understand your financial difficulties all too well. When hubby was unemployed and we were homeless, we were able to take advantage of indigent programs by many of the pharmeceutical companies who manufacture my medications. You can get application forms from your doctor, who will send the completed forms to each company along with a prescription. If you are accepted into that company's indigent program, they will give you your medications for free. The co-pays now that hubby has a job are about $450 per month for both of us. It almost makes me wish we were poor again to get the free meds. (not!) <g> If you have any questions, feel free to e-mail me; I'll do what I can to help. Ruthie A. rlaba51@yahoo.com


Joe S' October 18 reply to Patrick M's October 17, 2001 - Hi Patrick, It's been there, done that. When I was first diagnosed with CHF 3 years ago, all I could get was state disability of about $650. It took 6 months for SSD to kick in. Medical had a deductable of $245. I felt rich for 6 months and then the state stopped paying. Thirty days later SSD went up about $400. Since I couldn't afford to live on that I moved to an area where rents were half as high with no water, sewer or trash bills, and the electricity rate is the lowest in the US. Now Medicare has kicked in and they don't pay anything on drugs. I don't understand why your deductable is so high. Are you single? When Medicare kicked in after a 2-year wait, Medical paid the $50 premium. Naturally, they then kicked up my deductable to $450 but I don't need it anymore. If it wasn't for my little Internet business, I would starve to death. Joe S. jes@gbis.com


Joe L's October 18 reply to Jon's October 16, 2001 - Hi Jon, I just wanted to add to the EF discussion. I had a recent scan that showed my EF increased up to 53%. However, my cardiac output has dropped to 3.8 liters per minute, from around 5.5, and my cardiac index - which takes into account your body weight - is only 1.7 liters per minute per meter squared. I lost 10 lbs between scans. The doc said even though my EF is up to near-normal and my heart is pumping a greater percentage of blood per beat, I am actually doing worse because the supply of blood to my body per beat is much lower than it was. That sure explains why I feel worse. The doc believes I have developed significant diastolic dysfunction due to impaired relaxation of my left ventricle. My peak filling rate is only 1. The doc wants to try Verapamil to see if it helps with the relaxation part of the beat. If I do not feel better in 3 to 4 weeks he will add Lanoxin too. Everyone should keep in mind (as you have stated on your site many times) that EF is not the end all-be all indicator it is often made out to be by many doctors. Thanks for listening, Joe. JTLucido@aol.com


Darlene, October 18, 2001 - Hello to Jon and everyone else, This is my first time on this site but I have been following it the last couple of years. I had a massive heart attack, followed by severe congestive heart failure on May 2, 1998. I was 44 years old and very, very active. It was quite a surprise! I have been assessed and considered for a heart transplant but I do not need one at this time. I get around better than expected for my condition; I am class 3 to class 4. My medications are Accupril, digoxin (Lanoxin), Lasix, Novo spiroton, Coumadin, and Coreg. In the last couple of months, I have been diagnosed with diabetes. Reading this site and hearing about people with the same conditions has definitely helped me to understand and certainly gain more and better knowledge of my condition. Thank you! darlenej53@hotmail.com


Ben B's October 18 reply to Joe L's October 18, 2001 - Hi, What you wrote is important because diastolic dysfunction is best treated with calcium channel blockers (i.e. verapamil), which are actually contraindicated for systolic dysfunction. That's why people with normal EFs who still feel terrible should get tested for this diastolic dysfunction. I don't think everybody gets as complete care as you seem to get. Your doctor sounds on the ball. However, in my never ending quest for controversy, nobody who feels good with a higher EF should obsess themselves into thinking they suddenly have diastolic dysfunction after reading your post without having it confirmed. Believe me, it happens. bdbrinkman@juno.com


Jon's October 18 reply to Ben B's October 18, 2001 - Hi guys, When being treated with a calcium channel blocker, I would strongly urge you to talk to your doctor about making that drug amlodipine (Lotrel or Norvasc, I think). All other calcium channel blockers may have a negative impact on your life span. Amlodipine does not increase mortality in CHFers but it has been shown not to shorten CHFers' lives either. So if you have CHF and are prescribed a calcium channel blocker other than amlodipine, I would find out why. Jon.


Tracey, October 18, 2001 - Hey, I am Sherrell G's daughter. I wanted to thank you for all your prayers as my mom went in for surgery today. After a long day at the hospital I have just arrived home and I wanted to give y'all an update. She came out of the 3-hour long surgery beautifully! I saw her before we left the hospital and she was very attentive and alert. The doctor had many good things to say and mom is looking great! She should be coming home tomorrow. Thanks again for your many prayers. That's what has brought us through this! I'll keep you posted. tonygay@worldnet.att.net


Jon, October 18, 2001 - Hi everyone, If you use the chat room, please let me know if the listed times are still correct. Thanks, Jon.


Sharon P's October 19 reply to Jon's October 18, 2001 - Hi, Sorry. The co-pay for the Toprol-XL is $1.64. That's what happens when you reply to an e-mail in the middle of the night; you tend to leave out pertinent stuff. sparker103@home.com


Joshua, October 19, 2001 - Hi, I am a class 2 to clas 3 CHFer with an EF of 19%. I am scheduled for an Insynch pacemaker by Medtronic next Wednesday. I'm scared. Does anyone have any experience with the Insynch who can give me any advice? Thanks, Joshua. jatilton@tilda.ws


Tracey C, October 19, 2001 - Hi, everyone, Does anyone know what the ACS measurement is on the echo report? I had my follow-up echo today because I really didn't believe the result of my 70% EF last month - different doctor's office. I am basically the same as I was (55%) with the mild abnormal wall movement (other doctor said it was normal). My LV is the same, but the LVID size has increased a bit. All in all, a good report. I'll wait to hear from the doctor, I guess. Have a good weekend, Tracey. 2tcollins@home.com


John Len's October 19 reply to Ruthie A's October 18, 2001 - Hi Ruthie, I just read your suggestion about the indigent drug programs just as I opened the letter from Bristol-Meyers Squib approving me for a one year supply of (take note, Jon) Norvasc. This is one of about 4 drugs currently furnished to me by various manufacturers. a_lenny6@hotmail.com
 
Jon's note: ;-)


Lee R's October 20 reply to Joseph P's October 17, 2001 - Hi Joe, Yes, it is possible to have a loose connection, but as long as you had the ICD put in, it should be okay. The ICD will act as a pacemaker if necessary and also as a defibrillator if your heart needs it. I've had one for almost 4 years now and have had only 4 shocks, which were all necessary. It is like having an emergency room in your chest! Good luck to you. Bestest, Lee R. LeeJRoush@msn.com


Scott's October 20 reply to Joshua's October 19, 2001 - Hi Joshua, In all honesty, I am not familiar with the Insynch pacemaker specifically. However, I can comment on the pacemaker implant procedure itself. I'm pretty sure the procedure is similar for all brands. My dad had the Pacesetter V-194 pacemaker/defibrillator installed in August. He worried about getting the procedure for several days. I am happy to report that it was not worth any of the worrying.
     As you likely know, you are awake for the whole procedure. They say it can take up to 2 hours but it usually takes less. Because they freeze the area, you will feel some tugging, etc,..., but there is not really any pain involved. It is just under the skin. If your unit also contains a defibrillator, they will knock you out while they test to make sure it is working. If you are too weak, therefore a greater risk, they will do it another time (this was my dad).
     In my dad's case, I think it is helping him. Like most CHFers, we are constantly making changes to feel better. Therefore, it is tough to evaluate what proportion of his recovery can be attributed to the pacemaker. As a side note to others, Toronto General Hospital just wanted to install a defibrillator and not a pacemaker. In the end he got the unit that had both. He is doing well. Finally, I should add that it will be sore for a few days, and the area might be a little black and blue for a few weeks. However, following the procedure, you are completely fine for walking around. I hope this helps. Feel free to e-mail me if you have any questions. Thanks, Scott, from Kitchener, Ontario, Canada. kitchenerguy@hotmail.com


Jon, October 20, 2001 - Hi, I just wanted to comment briefly on the differences between the Insynch pacer and "regular" pacers. There is a considerable difference and that difference is all good, from a CHFer's perspective. <g> The implant procedure will take longer due to the third lead. It will also help a well-selected heart failure patient far more than a regular pacemaker would, having been designed especially for that group of patients. This is all explained in a great deal of detail at my pacemaker page. Be sure to read the "VRT" sections because that is what the InSynch uses - Ventricular Resynchronization Therapy (what a mouthful). There's no subsitute for experience but there aren't too many InSynch recipients yet (although at least 2 have visited here in the past). Jon.


Tracey C, October 22, 2001 - Hi, Does anyone have a low sodium stuffing recipe that they've tried that is suitable for "salt eaters?" Thanks! Tracey. 2tcollins@home.com


Pat Latimer's October 22 reply to Joshua's October 19, 2001 - Hi Jon and everyone, I had an Insync pacemaker/defibrillator implanted March 27, 2001. I was very scared about having it done since my participation was part of a trial before the device was approved by the FDA.
     I was in the hospital for a total of 3 days, having many (baseline) tests done, and I also had an EP study on day one. Apparently, I met the criteria by having an abnormal rhythm induced. I had the device implanted on day 2, and was back in the EP lab on day 3 for tests on the defibrillator function. I was not awake for any of the procedures but that may not be true for everyone. The implant took 6 hours, which is unusually long, due to some problems getting the third lead to stay in place.
     I felt great the first day home but crashed - exhausted - the next day and for several days afterward. My left arm was sore for a month. I had no pain or discomfort in the incision area at all but did experience ongoing fatigue for a month or more. I will e-mail Joshua directly with my e-mail address also. I will answer any questions from anyone else also, Pat. patlat@yahoo.com


Jana B's October 22 reply to Patrick M's October 17, 2001 - Hi Patrick, Man, I think I would use that $500 per month MediCal is charging you and pay for my own doctor visits! It would be cheaper and if you should end up in the hospital, MediCal can go retroactive 3 months and pay any hospital bills, although you'd have to reapply.
     How long have you been on SSD? Shouldn't the Medicare be kicking in soon (at 2 years)? Also, MediCal doesn't charge you a co-pay every month, only when you use it. If you didn't go to the doctor in that particular month, you wouldn't have to pay for that month. MediCal should also pay for your meds now. At least that is the way the rules were when I worked for them, but it has been a few years.
     Maybe you should consider getting married to make your household size bigger and get you a lesser co-pay! (Just kidding <g>) Did your income go up or something? Why is the MIA now not accepting you? Maybe you should file an appeal with the MIA and MediCal, explaining your circumstances. Maybe whoever approved your MediCal didn't count some of your cost of living expenses? I would at least appeal their decisions.
     I hope you get this all worked out. There is nothing like having financial stress on top of health issue stress! JByers4u@aol.com


Jon, October 22, 2001 - Hi everyone, I may be even slower than usual for a day or two. My daughter is home for a visit. :-) Jon.


Ruth P's October 23 reply to Luc D's October 17, 2001 - Dear Luc, I was so happy to see your post. I look at the board every day but, like you, have not been able to post. My dear husband died in April of fibrosis of the lungs. He was the one who always worried about me and here I am, still here. I went into quite a depression after he died but this month I sold our house and moved into a 4 1/2 room apartment. I have been really busy giving items away since I had to move from 12 rooms. I am still in montreal and in the same neighbourhood, so that makes it easier as my doctors, bank, etc,..., are all here and I can go to the same church.
     I had a laser procedure done on my left eye as I have developed macular edema due to my diabetes. Strangely enough, the day before Ron died I had an echo and my EF went from 25 to 60%. This gave me the strength to get through the many heartaches and problems of the last 6 months. I'll try to post once in awhile to let others know things can get better, although not always permanently. I second your thanks to Jon; he is one of the rocks in my life. Best to all, especially some of the veterans like you and me, Ruth P. rpow@total.net


Herbert L's October 23 reply to Tracey C's October 22, 2001 - Hey Tracy, Just forget the salt. Who needs it?! Go out in your garden and get plenty of fresh sage or sage that you have dried and use plenty of it. If you're worried about the bread, make your own without salt. It's the pepper, sage, salt-free butter, and onions that give it the taste. Yours always, Herb. :-) the-honey-do@home.com


Tracey C, October 24, 2001 - Hi everyone, I thought I would share my experience with my last echo. I posted that my EF was up to 70% and all was completely normal: wall movement, etc,..., except for the new "hourglass shaped" LV (left ventricle). Well, it seems that they had someone else's tape in while doing my echo and it wasn't even me they were looking at. I only pursued this after getting my report back because everything was just too off. So I went somewhere else, had an echo, and I'm the same as I've been all year, which is still good, but far from what the other guy's echo was. Can you imagine if the tape showed a severe worsening? I would have been devastated and probably put on meds I didn't need. Bad mistake, but luckily it was caught. Take care, Tracey. 2tcollins@home.com


Jack D's October 24 reply to Tracey C's October 22, 2001 - Hi, About that low-sodium dressing: substitute corn meal and flour for the bread crumbs. Use plenty of sage and use all fresh vegetables because canned veggies are loaded with salt. A couple of cups of corn meal and one cup of flour mixed well with the veggies works perfectly. If they want salt they can add it later. maddjak@hotmail.com


Jim R's October 24 reply to Tracey C's October 22, 2001 - Hi, Check out the recipes on www.megaheart.com. They have a holiday meal section with a complete Thanksgiving menu. I haven't tried the stuffing, but everything else I've tried from both the site and the cookbook have been good. Good Luck, Jim. jross10@attglobal.net
 
Jon's note: Low sodium links here


Skip, October 24, 2001 - Hi All, I'm new here but a regular on another board. I can't bear to see posts on last stages. I'm sorry, maybe I'm not mature enough or something. I've got tinnitis, sleep apnea, narcolepsy, and probably cataplexy, Barrett's Esophagus, kidney cysts, an ileostomy (short-boweled), a bad case of Crohn's Disease, an ICD/pacemaker, and have cardiomyopathy with a 20% EF. I have had CHF. I just want some of this stuff to go away. I don't have much choice but to accept the ileostomy since they threw the part that went over the fence away after surgery, but all the heart stuff and others just go away. It's too much for me. The people on Ginger's board are helping me quite a bit, but at times I get this resurgence of "I can't handle this." Sorry for being a pest. Hugs, Skip. bunker@eticomm.net


Sox Nelson, October 24, 2001 - Hi, Over the past 3 years this site has helped me more than most doctors that I've seen. My CHF has been acting pretty good but now I have another problem. Does anybody know if there is a site similar to The Beat for people with cancer, particularly liver cancer? Any information will be greatly appreciated. Thanks, Sox. sox@satx.rr.com


Pam, October 24, 2001 - Hi, I just wanted to thank everyone who responded to my post from earlier this month. The e-mails have slowed down now but I got a lot of reassurance from a lot of people. Thanks for all the help!
     Does anybody know about taking some alternative vitamins, in with meds? Like CoQ10 and carnitine, ect,...? I have started taking 30mg a day of CoQ10. My doctor doesn't know that much about it but she said go ahead and try a low dose.
     I have DCM and CHF. I have read that Hawthorne is good for that and some other things but I don't want to add anything that will be dangerous. I used to be on amiodarone (Cordarone) for arrhythmia but am not anymore. It gave me a thyroid problem (a goiter). They have upped my dosage on the thyroid med, and I am now having irregular heart beats. My thyroid level is fine but the goiter they are trying to get down.
     I did read that if you get too much hormone replacement that it can give you rhythm disturbances. I am guessing that I am having the irregular beats from that, so they lowered my dose. Does anyone know or relate to that? mattnpam@juno.com


Donna, October 24, 2001 - Hi, My doctor told me I have diastolic dysfunction according to echocardiogram results. He ordered a diuretic and potassium for me, and wants me to come see him in about 2 weeks. My doctor is a pulmonary specialist, whom I was sent to see because of my cough. The words "diastolic dysfunction" sent me running to the Internet for more information. I know I need to ask a lot of questions when I visit my doc. Any specifics I should ask would be appreciated. Also, if I have diastolic dysfunction, do I have CHF? Donna.smith@alltel.com


Jon's October 24 reply to Donna's October 24, 2001 - Hi Donna, You can go in and out of heart failure whenever you have a heart with improper function - CHF is a set of symptoms, not a disease. The Manual will really help you get a handle on that. Maybe others can prime you with questions to ask your doc. :-)Jon.


Sid K's October 24 reply to Pam's October 24, 2001 - Dear Pam, I have been under intensive CHF treatment by the Cleveland Clinic for months. I gave them the list of herbs, vitamins and minerals I am taking and they had nothing to say about this natural, self-treatment. They may not be helping, but they aren't hurting me either. Do your homework before you decide what to take. Under seperate e-mail I will send my vitamin list to you. I bought a juice extractor and make fresh fruit and veggie juice every day, using mostly organic produce. Every little bit helps! Good luck, Sid. SKleiner@aol.com


Ginger's October 25 reply to Pam's October 24, 2001 - Hiya Pam, I take 200mg of CoQ10 a day and 500mg of L-carnitine a day. I also take hormone replacement, but that's the lowest dose they have on Estrace. I have irregular heartbeats but they are PVCs and although a nuisance, they are harmless. Maybe you should ask for a Holtor monitor test and see what the irregular beats are - better to be on the safe side. I hope this helps some. I know irregular heart beats, if you can feel them, are scary. Stay well and stay safe. Hugs and prayers, Ginger. angelgin@bellsouth.net


Phyllis Alexander, October 25, 2001 - Hello to Jon and all my old friends, I and all the new members. I have been off tha pooter for months, not feeling well and also now with all the national bad news have been very nervous, but am asking my Lord and Saviour to please calm me down. I will try to come on soon and help new CHFers best I can with my experience having the disease. God bless. pa152@juno.com


Ben B's October 25 reply to Donna's October 25, 2001 - Hi, I know it is contrary to typical CHF treatment, but almost all the web sites I saw on diastolic dysfunction said a calcium channel blocker is an important addition. Some said it was the only family of medicines that was truly effective for this specific thing. They seemed like reputable sites. I think there is a preferred one - maybe Norvasc. I would ask my doctor about this. I also saw that prognosis is a lot better for diastolic than systolic dysfunction, unless you're one of those poor souls who has both. Even then, I think it is pretty manageable. bdbrinkman@juno.com


Donna's October 25 reply to Jon's October 24, 2001 - Hi, I've read everything on your site a couple of times. What I'm trying to figure out is what to tell people like my daughter. I can say I have diastolic dysfunction, but that won't make sense to her. I can say I have CHF, but that may scare her. According to you, a person doesn't have CHF, they're in CHF? Right? How do you know when you're in CHF? My only symptoms are fatigue and coughing. A part of my heart won't relax. Am I in CHF if I'm tired and coughing? Can you tell I'm confused? Oh yeah, that's another symptom, isn't it? ;-) Also, can diastolic dysfunction be genetic? My grandmother had CHF. She was diagnosed at 70 years. She died last year at 98! donna.smith@alltel.com


Jon's October 25 reply to Donna's October 25, 2001 - You're asking me a question I can't answer - what you want to tell people. <g> I have no way to understand your relationships with people. I wound up telling everyone the truth - that I have a weak heart and heart failure - including my 12 year old daughter.
     I periodically rewrite the top section of The Manual. I just did, so go back and read it again and see if it helps. When you tell someone you have diastolic dysfunction, they will understand it if you understand it, because you can explain it to them. I honestly don't think I can give a shorter, clearer explanation than I did in The Manual.
     Coughing can be from meds (ACE inhibitor) rather than from heart failure. The only way to tell is to switch to a different med, maybe an ARB, and see if the cough goes away. Fatigue is one symptom of heart failure but if it is your only symptom, I would not necessarily say you are in CHF. Fatigue can also be caused by too much diuretic and by beta-blockers. Usually, shortness of breath and fatigue go hand in had when you are in CHF.
     If you've read everything on my site a couple of times, I should give you an award or something! I think there's over 4,000 printed 8 x 11 pages on my site overall - I've never even read it all, I don't think. <lol> Anyway, I hope The Manual rewrite helps, Jon.


Pam's October 25 reply to Ginger's October 25, 2001 - Hi, Thank you for your input, Ginger. I had a doctor's appointment today to see if my thyroid has gone down and it has. That was due to being on amiodarone (Cordarone) a while ago. But I am not on that anymore, either. About my irregular heartbeat, my doctor says it is an extra beat, which can be a normal but irregular beat. She says it is common for people even without CHF to have them. She asked me if I was still taking CoQ10, and I said yes. She doesn't know a lot about it, so she told me to stop taking it and see if that is what caused my heart to do this. If in 5 days it hasn't subsided, then she told me to go down on my thyroid medicine. I used to have an irregular beat and then for a long time I didn't have it, now I am again. She thinks it might be the thyroid medicine. Yes I do feel it when it happens, and it was scaring me, but if I know it's okay I won't be so scared. Thank you again, Pam. mattnpam@juno.com


Patrick M, October 25, 2001 - Hi, I have 2 different blood pressure checking units. Both are the automatic digital type and every time I check my BP at home it's okay but every time it's checked at the hospital clinic, is it always a lot higher. I read somewhere that the digital BP units are not as accurate as the mechanical/anaerobic units. Is this true? Does anyone have a automatic digital unit that has been compared to a good hospital unit and found it to be accurate in comparison? If so, I'd like to know the type and manufacturer brand so I can get one. Thanks and God bless all. NarleyHarleyGuy@webtv.net


Jon's October 25 reply to Ben B's October 25, 2001 - Hi everyone, My CHF doc got back to me the same day on this one. He says, "Diuretics are the only generally useful therapy for diastolic dysfunction. Digoxin has been shown to be beneficial in one study. Calcium blockers have some theoretical benefits but no clinical trials demonstrating meaningful benefit to my knowledge."
     I would like to check into the information on the sites you visited, so I can look up the studies they quote. If you could e-mail me the Urls, I would appreciate it. I must confess that my CHF doc is swamped due to starting a new heart transplant program but he usually is on top of research anyway - but anyone can miss the occasional study. ;-). Jon.


Jon, October 27, 2001 - Hi everyone, I'm sorry not to have put up posts yesterday. Neither of my ISP dial-up connections would sustain long enough to upload anything. The joys of the Internet. ;-) Jon.


Donna's October 27 reply to Jon's October 25, 2001 - Hi, Okay, okay, I didn't read everything. I mean, after all, I'm not ready for a pacemaker or transplant. I did open everything and read everything that could apply to me, a person who is only taking diuretics and potassium. The jokes are a nice relief. I don't think I'm ready for a bumper sticker. The web site information is great, as are your medical definitions. I printed out your manual and handed it to my son and said, "This is what I have." I'm kind of like Moses I like to think - it's in my head and in my heart, but it just doesn't come out of my mouth very well sometimes. Please though, try to think back to your first days after your diagnosis, all of the questions/thoughts jumbled around in your head. My main goal in writing, I think, is to reach out and touch someone. I don't feel comfortable going on and on to people around me about CHF. If I do, sooner or later they'll run and hide when they see me coming. I'm just trying to sort things out in my head. I keep thinking that I'll go see the doc in a couple of weeks and he'll tell me that what I have is not that big a deal, after I've gotten my family all worried, and that maybe I shouldn't have said anything for a while.
     As for my cough and fatigue, the cough has been around for about 10 months, steadily worsening. The fatigue has been around a few years, all before any diagnosis and any medication. The doc says the coughing is from fluid in my lungs that's spilled over from my heart. That fits with diastolic dysfunction. So now I wonder if every time I cough (I'm talking that heavy cough that makes people think you're dying) it's from new fluid that has just spilled over into my lungs. In other words, I need to quit thinking so much and get on with my life. Thanks so much for this site, Donna. donna.smith@alltel.com


Jon's October 27 reply to Donna's October 27, 2001 - Hi Donna, I hear that, "I've read it all" comment so often that you just happened to be the proverbial straw. My pre-Jon's Place CHF experience was unusual to say the least, so I don't get into it. Please disregard all my previous comments and advice, since I was basing them on a natural assumption that your symptoms were post-CHF and post-meds. Jon.


Mark, October 27, 2001 - Hi everyone, I haven't posted here for awhile. I just wanted to say hello and thank everyone who responded to some of my posts about Coreg, depression, etc,... I have been feeling really good lately and haven't had any problems. I especially wanted to thank Jon for the site he obviously has put so much into. Knowing that I am not alone with this problem and hearing how others deal with it helps. I just hope with the holidays coming up that everyone has a great holiday season. mat2205@aol.com


Pat M's October 29 reply to Donna's October 27, 2001 - Hi Donna, Having a diastolic dysfunction myself, I can relate to your confusion. I understand what you mean when you are trying to get your mind around the whole CHF concept. Yes, there is fatigue with diastolic dysfunction and a cough if you have fluid. I was also checked when I was coughing to see if it might be bronchitis or asthma kicking up. It wasn't, because when my PCP had me double up my Lasix for a week, my cough went away. I can't take beta-blockers for some reason so I take 50mg of hydralazine 3 times a day as well as 60mg Lotensin 3 times a day to keep my BP really low. It really slows me down but it seems to be helping and my doc says I'm stable for now. The more you talk about it, the more you will accept that you have it. I hope this helps. God Bless, Pat M. pmarble@tellico.net


Jon, October 29, 2001 - Hi everyone, I think everybody here has been spammed by some people who strip e-mail addresses off web sites like mine (it's not just Jon's Place) and advertise alternative therapies. Please note that Jon's Place is not associated with any product, nor do I publicly endorse any product other than MyoVive!
     I am working on getting these people's web hosts and e-mail services to remove them. However, you could all help me a lot in this. Just forward any spam e-mails to the proper address, along with a complaint. For example, if the spammer sent the message from yahoo.com, forward the message along with a complaint to abuse@yahoo.com. If it came from Hotmail, forward it with a complaint to abuse@Hotmail.com, and so on. This is far more effective than me sending complaints third-hand because if you forward the original, they get the header and can track the guy down and remove him quickly, rather than slowly.
     I am spending literally hours every day on these issues and it is crippling my ability to update this site. Spammers are everywhere and I no longer have this kind of time to deal with it. I thank everyone for letting me know what is happening and please continue to do so, but also please help me out by following the steps described above.
     You can also go to the web site in the spam advertisement and find a contact page for that web host. If the web site is on (for example) www.lala.net/spammer/spam.htm, you would go to www.lala.net (the main domain in the Url) and find the contact page for that domain, then send a very strongly worded complaint about the owner of www.lala.net/spammer/spam.htm spamming you. These steps will have an effect! Thanks, Jon.


Donna S, October 29, 2001 - Hi guys, Wanting to get in shape, I thought it would be fun to try skating. I bought the skates, tried them out, and am now typing one-handed. <g> I've sprained my wrist (or something). You'd think a 45 year old grandma would know better. Later, Donna. donna.smith@alltel.com


Mary A, October 29, 2001 - Hi all, I first want to thank those of you who replied to my message about Disability taking too long, and who offered advice to speed up the process. Now on to my subject: Yesterday I got angry at my kids for not helping around the house more often. This involved a bit of passionate yelling and throwing of pots, etc,... Well, when I was in the middle of all this I went into atrial fib, and stayed in for the next 7 hours. You can't imagine how depressing this was. What is life going to be like if I can't even get mad at my kids without getting sick?! kactus@voyager.net


Amelia, October 30, 2001 - Hi Jon, I sure hope you are doing well and to all other ailing hearts. I have read a few messages regarding diastolic dysfunction,but don't remember anything on systolic dysfunction. What is the difference and is one more serious then the other? Also, what is hypokinesis of the inferia wall of the heart? Many thanks for this wonderful forum. Best to all. amelias@erols.com


Karen K, October 30, 2001 - Hello, Just an "old-timer" checking in. I've been off the internet for about 2 weeks because my hard drive crashed. Luckily it is under a 3-year warranty. My 34 gig hard drive was replaced with a 57 gig hard drive at no charge. However, nothing was salvaged from the old drive and unfortunately it wasn't backed up (duh!).
     I'm still hanging in. I am now seeing a CHF specialist who has changed my class from 1 to 2 and also altered my meds a bit. I see him more frequently than the doctor here in town saw me and blood work gets done every time. However it is an hour's drive each way, but at least there's a nice mall in Iowa City.
     Because of my husband's MS diagnosis, we have built a new house and are in the process of moving. The new house is wonderful, open and airy. My computer will be located in a sunroom that gets light and/or sunshine from the east, west, and south. We are taking it slow moving. My husband can't do much of anything physically without worsening his symptoms. I'm doing fairly well.
     Our daughter who was diagnosed with breast cancer in February, has completed two rounds of chemo and is currently nearing the end of her radiation treatments. Not due to the cancer but certainly very untimely is that she is currently going through a divorce. I won't go into any details. Suffice it to say I could throttle the guy she was married to and who fathered our 2 grandchildren. Please join me in prayer for better times for Wendy and her 2 children, Christian and Katie.
     I just wanted to let you know, Luc, that I hadn't yet died and I've been around for quite awhile, Karen. karenk@machlink.com


Jon, October 30, 2001 - Hi everyone, Ben's recent post triggered a quick search of my own on diastolic dysfunction treatments. I have not gone into this in depth but certain things are pretty clear. I'll stick to calcium channel blockers for now and will try to find time to research Medline and other in-depth resources soon.
     Most literature recommending this class of drugs for CHFers with diastolic dysfunction are very cautious. They say things like "Start low dose and increase slowly - and only - if desired effect and no evidence of increase in CHF." or "Patients with a history of heart failure may be treated ... but careful attention must be given to the maintenance of heart function." or "The use of calcium channel blockers ... can be appropriate."
     Mortality is a big sticking point. No one knows if CCBs (calcium channel blockers) will shorten the life span of a CHFer with diastolic dysfunction. They might, but it is unknown, although it is proven that CCBS do shorten the lives of CHFers with systolic dysfunction.
     Treating diastolic dysfunction seems to be where treating systolic dysfunction was about 15 to 20 years ago - the testing stage. No one knows what works, how well it works, and what the dangers are. If you have diastolic dysfunction, get a really experienced CHF doc and stick your toe in the water treatment-wise before diving in. If you take a CCB, I would suggest taking amlodipine. That's my take on it for now. ;-)
     PS. Diastolic and systolic function are explained in The Manual. Tip for finding info here. Jon.


Davida S' October 30 reply to Donna's October 24, 2001 - Hi Donna, Please find a CHF doctor or a cardiologist. You need to see a heart specialist and not a lung specialist, since it is a heart condition that is causing possible lung dysfunction such as coughing and shortness of breath. After all it's the cause of a health issue that needs to be addressed and treated. Run, don't walk, to the nearest heart specialist. Fluid reduction is great but it does not assist with the immediate heart function. It may relieve the symptoms but the cause is still there.
     My husband had CHF with an EF of less than 10% initially after a virus attacked his heart. Now 18 months later, his EF is within normal range. It was a very long and tough 18 months but he had a terrific CHF specialist that helped and monitored his progress closely. There are many tests to take to evaluate your heart function properly so that a successful treatment can be introduced. You can forget a lung doctor doing the necessary tests. What surprises me is this doctor failed to recommend or suggest you contact a cardiologist or CHF specialist.
     Please take control of your health care and be an active participant, that's what this site is truly about. There are meds out there that can assist with strengthening your heart function and improving symptoms. cavalier_1@msn.com


Herbert L's October 30 reply to Mary A's October 29, 2001 - Hi, Anger and stress set me back with my CHF for a longer, stronger time than anything else. However, it is teaching me to avoid anger and stress, and I think is making me a more enjoyable person to be around so it has some good trade-offs. I sure wish the lessons were over, as there are times when I forget what I've learned. You're not alone. Regards, Herb. the-honey-do@home.com


Mae, October 30, 2001 - Hi, I am looking for anyone who has had cardioversion and is taking amiodarone (Cordarone). My doctor has advised taking it and trying cardiversion for a-fib. Has anyone tried this? Successes? Downsides? Also, has anyone had a transesophageal echo (TEE)? I am looking for info. Thanks, Mae. Mboehm2968@aol.com


Diane Page, October 30, 2001 - I have ischemic cardiomyothy after 3 MIs and a quadruple bypass. I am in class 2 to class 3 CHF and have a local cardiologist but my main doctor is at Shand's heart failure clinic. This past weekend I went to a local ER after having a heavy chest and having to use oxygen when lying down. I am on one mg Bumex BID. I was in the ER for 2 hours without oxygen and no diagnostics even started. I wasn't screaming or yelling or obviously in acute distress so at a 225-bed hospital I was put in a room and left.
     This is an old routine to me - I needed my "radiator" drained. After 2 hours I raised a little ruckus. I finally was seen and when I described my 3 MIs - 2 through this very ER - and my bypass, everyone got on the ball. After IV Lasix, I was sent home because I had oxygen at home. The ER doctor said they didn't know how to handle patients who spoke in terms past "I can't catch my breath." Couldn't they figure out I couldn't even chase it? What do I do to keep the next visit (which will come) from being so stressful? Diane P. fjpage@n-jcenter.com


Jon's October 30 reply to Diane Page's October 30, 2001 - Hi Diane, First, try to eliminate that next ER visit! If your main doc is at a CHF clinic, he should be working with you very closely as long as you are still having to go to the ER for CHF. Kick him in the shin and tell him to get on the ball adjusting your meds. Also, if you are not on a low sodium diet, get on one; if you are on one, try reducing your sodium intake even further. You may need to try a fluid intake restriction, starting at 2 liters per day if it doesn't conflict with your other health concerns. At your CHF class, you should be on a regular, planned exercise program as well!
     If you do have to visit the ER, type up a plain English, very brief, easy to read "resumé" about your most serious heart and health problems. Read it to every person that sees you in the ER, starting at the admissions desk, the triage nurse, and so on. They'll get the idea. <g> Jon.


Scott Brown's October 30 reply to Mary A's October 29, 2001 - Hi Mary, How do your kids react to sadness instead of anger? When my mother would get mad, her rage never seemed to get through to her thickheaded son. However, when my mom would get sad, I would feel really bad for her. This was most effective for me. Depending on the age of your kids, while throwing the pans might be emotionally therapeutic for you (but apparently dangerous), it is likely only effective the first time anyway. Oh well, one perspective. kitchenerguy@hotmail.com


Amelia's October 30 reply to Mae's October 30, 2001 - Hi Mae, I am on amiodarone but have not had a cardioversion except when I had cardiac arrest a few years ago, before being on amiodarone. As far as the TEE, you will be sedated so there is no pain or discomfort until its over and then maybe your throat may be a little sore. It's very effective to get to the bottom of your heart. The first try I went into a-fib and the procedure had to be aborted. The next day they tried again and were able to know more about my heart. They found a interatrial septal aneurysm with a shunt. The septum was very thin. Heparin was started to prevent more TIAs and I am watched very carefully. I have my Coumadin checked every 6 to 7 days and see my cardiologist every week to 3 weeks. Sometimes I think my doc is being overly concerned but after reading some of the messages from this site, I am grateful that I have a doc who is on his toes and cares. Before I found this wonderful doctor I really thought I was losing my mind since other doctors said there was nothing wrong with my heart. Good luck and best to all. amelias@erols.com


Marsha H's October 30 reply to Diane Page's October 30, 2001 - Hi Diane, Jon's advice to you was right on. I carry a small medical resumé around with me all the time. It lists my meds, my doctors and their coordinates, adverse drug reactions and allergies, and a brief history. You never know when it may save your life, much less some major aggravation. Everyone who sees me as a patient thanks me for having it, I think because they know that the information is accurate and relatively complete except for what is new in the moment. jeffsmimi@earthlink.net


Ruthie A's October 31 reply to Jon's October 30, 2001 - Hi Jon, I thought you might be interested in my experience with calcium channel blockers. I have what my CHF doc termed as "classic" diastolic dysfunction. He put me on Norvasc to see if I got any benefit from it. I got horrible headaches from it so he switched me to another one that I cannot remember. Anyway, I was on that drug for 6 months. I not only did not get any benefit from the drug, I went backwards a bit. My doctor took me off the CCB and within 3 months I was back to my previously ornery self. <g> So, at least in my case, calcium channel blockers do not help diastolic dysfunction. For what it is worth, Ruthie A. rlaba51@yahoo.com


Jon's October 31 reply to Ruthie A's October 31, 2001 - Hi Ruthie, This is very helpful. Anyone with diagnosed diastolic dysfunction who has taken CCBs - no matter whether they helped or hurt or had no effect at all - should write in and let us know, so others who are unsure what to do treatment-wise can at least see some pros and cons from people who have been there. This isn't about what I think about the drugs right now - it's about whether CCBs can help people! Thanks, Ruthie!
     To keep everyone clear, remember that diastolic dysfunction is a problem with the heart's relaxation phase - it doesn't take in (fill with) enough blood. Systolic dysfunction is a problem with the heart's contraction phase - it doesn't pump out enough blood. Be sure to apply the appropriate advice to you own condition. If you're unsure which you have, please contact your doctor immediately and find out so you'll be looking up the right info for you. Jon.


Janet, October 31, 2001 - Hi everyone, I'm new to all this. I have had class 3 CHF for one year now. I am fighting all the time to stay sane. I was a very active person before any of this. Now I'm trying to come to terms with having to sit for hours on end because I am exhausted all the time. I do folk art, reading, and tapestry but this can only be done when I feel well. I really need to talk with someone that understands what it's like. I feel sick all the time. It would be great if someone could correspond with me. Thanks for your time. Bye for now, Janet. wjanet@hotmail.com


Jon, October 31, 2001 - Hi, This is to everyone who is using an e-mail address starting with www.. Please switch to a standard e-mail address so I can put up your posts. The beginning www. indicates a hypertext address, which cannot properly be used as an e-mail address, only as a web page Url. Thanks, Jon.


Cherri Olson, October 31, 2001 - Hello, I look at the posts frequently and have noticed references to Medline for information. I have another great site that has helped me, especially with meds. That site is Medicinenet.com. Thanks for all your posts; they all have helped me a lot, Cherri. cherri0487@aol.com
 
Jon's note: See this page for lots of helpful links


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.

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