The paperwork never ends The Archives
October 16-31, 2004 Archive Index CHFpatients.com

Jon 10-16     my Internet connection is down
 
Jon 10-19     back again
 
Joy's 10-19 reply to Bob's 10-13     coping with depression and heart failure
 
Jean 10-19     seek valve surgery experiences
 
Michelle D 10-19     seek Social Security disabilty experiences
 
Steven 10-19     reaction to Plavix
 
David R 10-20     seek ways to increase energy level
 
Vee's 10-20 reply to Betty's 10-14     cholesterol experience
 
Elizabeth K 10-20     update - thank you all
 
Jon 10-20     Vo2max and cholesterol results
 
Lisa 10-20     update - thank you all
 
Terry 10-20     update and some questions
 
Dan 10-20     for those applying for disability
 
Mary Anne's 10-20 reply to Jean's 10-15     valve repair experience
 
Bill 10-20     feeling sick after lifting things
 
Stephanie's 10-20 reply to Chuck F's 10-12     smoking cravings, LifeMasters question
 
Peggy A 10-20     could use some encouragement
 
Mark C 10-21     seek CHF doctor in Alabama
 
Elizabeth K's 10-21 reply to Bill's 10-20     weight lifting experience
 
Sherri 10-21     how does a CHFer gain weight when he needs to?
 
Sandy's 10-21 reply to Peggy A's 10-20     energy levels experience
 
Louisa 10-21     have any CHFers had children?
 
Pam's 10-21 reply to Peggy A's 10-20     some uplifting quotes for you
 
Ron 10-21     seek opinions on upcoming stress test
 
Loretta D 10-21     seek experiences with meds and surgery
 
Pat 10-21     what are good vitamin and CoQ10 brands?
 
Sherry L's 10-21 reply to Peggy A's 10-20     coping with heart failure
 
Vicki's 10-22 reply to Michelle D's 10-19     applying for disability
 
Vicki's 10-23 reply to David R's 10-20     a possibility
 
Yvette's 10-20 reply to Quentin's 10-14     to work or not to work?
 
Steven Denton's 10-23 reply to Peggy's 10-20     comparing energy level to others
 
Carla's 10-23 reply to Louisa's 10-21     heart failure & having children
 
Peggy A 10-23     hanging in there
 
Bill's 10-23 reply to Elizabeth K's 10-21     the effects of lifting things
 
Pat S 10-23     seek beta-blocker experiences
 
Michelle D 10-23     how do I lower triglycerides?
 
Steve H's 10-23 reply to Loretta D's 10-21     surgery on CHF meds experience
 
Sandy's 10-23 reply to Pat's 10-21     buying vitamins & supplements
 
Amy 10-23     watch your meds when in the hospital
 
Elka's 10-23 reply to Louisa's 10-21     cardiomyopathy & pregnancy
 
Quentin 10-25     an update
 
Joanne 10-25     seek potassiume experiences & more
 
Jon's 10-25 reply to Joanne's 10-25     I hope others also reply
 
Carla's 10-25 reply to Michelle's 10-23     bringing cholesterol down
 
Larry O 10-25     do beta-blockers lower HDL?
 
Venita's 10-26 reply to Joanne's 10-25     maybe a CT scan would help
 
Tony Myrick 10-26     introduction
 
Steven Peters' 10-26 reply to Yvette's 10-23     to work or not to work
 
Dave T 10-26     what sleeping aid do you use?
 
Scott Brown's 10-26 reply to Louisa's 10-21     CHF and pregnancy
 
Patricia P 10-27     difficulties with brain to speech - questions
 
Dale E 10-27     amiodarone & bad spell questions
 
Aaron 10-27     update on LVAD use
 
Karen 10-27     seek heart failure doc in South Carolina
 
Kathy H 10-27     extra heart beats versus tachycardia question
 
Bill 10-27     disability pay question
 
Michael 10-27     seek "mild" cardiomyopathy experiences
 
Chuck F 10-27     Dor Procedure experience
 
Rita Carrillo 10-27     questions about late husband's care
 
Joanne 10-27     update, uncertain about valve surgery
 
Jon's 10-27 reply to Joanne's 10-27     valve surgery
 
Fabian 10-27     dealing with CHF & more
 
Elka's 10-28 reply to Joanne's 10-27     valve replacement
 
Jon's 10-28 reply to Joanne's 10-27     valve replacement
 
Jacky 10-28     could this be amiodarone?
 
Sue 10-28     seek advice from spouses of CHFers
 
Pam 10-28     seek beta-blocker & ACE inhibitor experiences
 
Bill's 10-28 reply to Patricia's 10-27     mental slow down with heart failure
 
Tom S' 10-28 reply to Karen's 10-27     my experience & more
 
Scott Brown's 10-28 reply to Aaron's 10-27     that's great news
 
Linda 10-28     seek CHF doc in south Georgia or north Florida
 
Louisa 10-28     thanks to everyone
 
Stacie H's 10-28 reply to Jon's 10-27     heart valve questions
 
Jon's 10-28 reply to Stacie H's 10-28     heart valve questions
 
Nick's 10-29 reply to Michael S' 10-27     please see a heart failure doc
 
Evelyn 10-29     are these changes normal?
 
Susan B's 10-29 reply to Sue's 10-28     helping your husband with his CHF
 
Steven's 10-29 reply to Sue's 10-28     helping your husband with his CHF
 
Joy's 10-29 reply to Kathy's 10-27     extra beats & tachycardia
 
Norma 10-29     pig valves and meds
 
Lowell 10-30     should I see a CHF specialist?
 
Ann Lau 10-30     how important is a flu shot, really?
 
Marty 10-30     what can I take for respiratory infection?
 
Hal 10-30     what can I take for this?
 
SangeetaBhagwat 10-30     online caregiver information
 
Sue 10-30     thank you for your help
 


Jon, October 16, 2004 - Hi everyone, My DSL connection is down on the server side, so I can't receive anything online. I am going to upload this update on the forum from my wife's system. Hopefully, soon this will be fixed and it will be business as usual. Until then, I am pulling the form so posts don't stack up on my too much. Please have patience - it's just one of those online things I have no control over. Jon.


Jon, October 19, 2004 - Hi everybody, I'm back. I apologize for the down time, it turned out to be my Windows XP Pro on the blitz, refusing to allow any networking at all, even dial-up. I reformatted and clean-installed the OS and am back up and running now. Apparently, my scanner simply won't run on this OS; its driver installation may be what whacked my operating system. It took upper level tech support to figure that one out, which took awhile to reach. System Restore and System Repair coudn't bring it back. <g> Jon.


Joy's October 19 reply to Bob's October 13, 2004 - Hello Bob, I can only affirm what others have said to you here. Persevere with the best medical support and insist that they help you to find a combination of meds that work for you. I am a chronic and sometimes acute depressive, using medication, therapy and life style changes. The acute phases have always been caused by a clash of medications - my trusted antidepressant clashes with some major pain relief drugs, some strong antibiotics and even a herbal medicine. Those phases are seriously suicidal. All the best to you in your search for a balance of wellness. Joy in New Zealand. farrell-kelly@xtra.co.nz


Jean, October 19, 2004 - Hi, I am 78 years old. I have heart failure and severe mitral regurgitation with a left ventricle ejection fraction less than 20%. Has anyone else with similar circumstances decided to have mitral valve repair/replacement surgery? What was the outcome? Would you make the same decision to have surgery again? shassmill@aol.com


Michelle D, October 19, 2004 - Hi there, I hope everyone is well. I have been out here in Kansas enjoying the fall, which is a season we do not have out in San Diego where I am from! I decided to come and visit, and get a change of scenery. Boy, does it help with the frame of mind to get a change sometimes?!
     I hope that anyone who knows anything will give me their opinions. I applied for Social Security Disability. I had a phone interview and they sent me an application and other paperwork. I got it back to them right away. About a week ago, I was sent some more paperwork to fill out. A letter explaining that they were with the medical review and or development department wanted more information and I had 10 days to get the paperwork back to them or they could make a decision without any more info.
     Needless to say, I had my sister in San Diego fax me the forms and I filled them out and sent them right back. They had me fill out an exertion questionaire and an asthma questionaire and a work history type questionaire also. All of the work stuff was on the application so I don't understand why they needed more. Anyway, my question is, does this mean I actually may get the benefits? Is this a usual procedure? I explained on another sheet of paper I believe that with my hands as bad as they are, and the development of the heart failure and pulmonary hypertension, and the diabetes and asthma, the I do not feel that I could work a normal job.
     I hope they take all of it into consideration. I am starting to get panicky about not going back to work, yet at the same time I have some days that I feel so unbelievably horrible that I don't know how I could go back. Any comments would be greatly appreciated. Thanks for being there. escomeesh@hotmail.com


Steven, October 19, 2004 - Hi, I had heart attack back in August and then quadruple bypass surgery in September. I was put on Plavix, taken off Plavix, and then put back on it after the surgery. It seems to have caused a nasty rash and stomach pain in me. I saw a doctor today and he put me on a week's worth of Prednisone at 50mg once a day. I just wanted to let others know about my reaction to the Plavix. redwolverwing@cs.com


David R, October 20, 2004 - Hi, I am looking for information. I am age 39 and was very athletic for the past 20 years. During an exam, I discovered that I have a LBBB. When first diagnosed, my ejection fraction was 45%. Within 10 months it has gone down to 34%. I have been taking Altace and Coreg. I am used to running up steps in the buildings I work in every day, but recently can't seem to muster the energy to do it. I had a cath and all is crystal clear. I am looking for anyone in a similar situation that might be using different meds or vitamins that might be able to point me in another direction. dregoli@vzw.blackberry.net


Vee's October 20 reply to Betty's October 14, 2004 - Hi Betty, Diet has vastly improved my cholesterol levels, down 35% or more from what they were 3-1/2 years ago. I don't take statins or other cholesterol lowering drugs. This was a long process of trial and error because I had to throw out much of the standard nutrition advice I had heard for years about "healthy" eating. So much of what we have been told about diet is bogus or misleading, especially generalized advice about eating low fat. My cholesterol levels were at their absolute worst when I was eating a very low fat diet (total cholesterol 307).
     Now I am very selective: Not much saturated fat, lots of monounsaturated fats, low glycemic index carbohydrates, few processed foods. Mostly I eat fish, chicken, vegetables, oils, nuts, seeds, and whole grains. I use a Nutricounter - a little pocket program that calculates food values including sodium, so it is pretty easy to track what I am eating and keep on target. My goal is about 40%-40%-20% calories from fat, carbohydrate, protein. It is a little hard to get the percentage of monounsaturated fat that high without increasing the amount of saturated fat as well.
     Whew, sorry to make this so long but you've got me on my soapbox now. ;-) My theory on all this is that high blood insulin levels from eating high glycemic carbohydrates affect cholesterol production by the liver in at least some of us who are genetically susceptible. I do think diet plays a big part, but you need to find what works for you. Be skeptical, it may not be what you learn from the usual nutrition classes and medical advice.
     Get lipid tests frequently so you can monitor what is really working and what isn't. Have you had your homocysteine and CRP levels tested? If they are high, you may want to consider taking a statin because you could be at higher risk. My cholesterol was highest before I started Coreg, so I don't think that was a factor for me. I get a lot more exercise these days, so that likely helped as well. Good luck, I do think there's a lot you can do for yourself on this one!imagine_@earthlink.net


Elizabeth K, October 20, 2004 - Hello, A big thank you to one and all. Yesterday was the first year anniversary of the event! Despite starting at class 4 with a LV infarct the size of Texas and some nasty artery occlusions, my kayak finally got wet, the mountain bike is wearing a respectable layer of dust and I can spell Microvolt T-Wave Alternans.
     Exercise, low-sodium diet, and strict adherence to the drug protocols can result in a good outcomes. Thanks to Jon for the site and each of you for sharing your stories, tips, tricks and hard-won wisdom. It has all been of enormous help on the long journey out of that deep dark hole we all know too well. Thank you. WmOccam@aol.com


Jon, October 20, 2004 - Hi everyone, I got my test results mailed to me. My Vo2max is up 50% (10 "points") from the last one two years ago. This score was 30 ml/kg/min. Apparently losing extra weight and exercising religiously has paid off. My HDL and triglycerides are excellent but my LDL level is a little high. I am in the process of losing the last of my extra body fat - 8 pounds from my weight at the blood test. I have also increased my exercise schedule. That's my approach to lowering my LDL level over the next 6 months and then we'll see how I am doing. Jon.


Lisa, October 20, 2004 - Hi Everyone, Just an update. Yesterday my dad had a new defibrillator implanted due to low battery on his original. Thank you so much to those of you that responded to my earlier questions regarding this procedure. The procedure was completed at Allegheny General Hospital in Pittsburgh, Pennsylvania. His doctors are just amazing. All went well, and he is home recovering nicely.
     He got a slightly smaller unit this time. He was away from us for a total of about 3 hours and when he returned he was well enough to sit up and have lunch. We are relieved, as there was a point in time when he got his first unit that I wasn't sure we would ever see this day for a replacement. Thanks again for the support and take care everyone. lzeigler@marsbank.com


Terry, October 20, 2004 - Hello all, I have been visiting this site on and off for about 3 years now and have been quite encouraged by the posts. I would like to thank Jon for his wonderful work and efforts. I am presently age 47 and was diagnosed with heart failure in October of 2000. I have SVT and prior to CHF diagnosis was having SVT episodes daily. When first diagnosed, my EF was 8%.
     I am an electronic technician by trade and have not been able to work since the severe onset of the disease. My work takes a lot of deep thinking for troubleshooting and I find that when I try to attempt this, I get confused and weak. My arms burn when trying to even screw and unscrew hardware, thus the need for SSD. I hate having to be on the dole, and my wife is stuck at a bad job for the insurance for my prescription drugs, and this gets me frustrated and depressed.
     My EF has risen to approximately 45% since drug therapy begun and the SVT seem to be under control. I noticed almost everyone is on Coreg. My cardiologist has me on Normodyne (labetalol) instead. Actually I'm on the max dosage of 800mg a day and my blood pressure still gets up to around 190/110-120 during stressful situations, like when going for doctor visits. I also take Accupril 20mg daily and Lasix 80mg as needed. I stopped taking spironolactone (Aldactone) because I did not like all the negatives that I have read about it and nothing seems to have changed since stopping it.
     I walk about 3 to 4 times a week, up to 8 miles at a clip at a pretty good pace. I might try to start a little weight training as my muscles are beginning to atrophy. I also notice however, that when I do walk far, the next few days are really difficult. I feel like I got hit with a sledge hammer and have almost flu-like symptoms. Another thing I notice while walking is that if I'm on a flat concrete surface my legs feel sturdy and strong, however, when I switch over to non-level surfaces like grass or sand, my legs feel shaky and weak. Has anyone ever experienced that?
     I too cannot sleep on my right side. This seems to cause what feels like jolts in the center of my chest, I guess those are PVCs. Yeah, I get those every day, not as much as before, but often enough to remind me how not right I am.
     This is for you men, does Coreg put a damper on your love life? Ever since I'm on these drugs, well, I am certainly not the same man I used to be. I was wondering if it's the Normodyne and if it is, maybe Coreg would be better for me. However, I do believe the Normodyne also helps with the SVT. Does Coreg help in dampening arrhythmias? Anyway, I'm hanging in there and making the best of it. It sounds like a lot of you folks are doing the same. tarkus@att.net
 
Jon's note: I should point out that low-dose spironolactone drastically reduces risk of death - it's not meant to help symptoms - just to help you stay alive. Look into Inspra (eplerenone) if you don't want to take Aldactone. Don't walk so far - you're not recovering properly. I stop at just over 2 miles every day.


Dan, October 20, 2004 - Hello, My wife has been experiencing post-polio and last year applied for SS disability. She received it first try. Two of the tips she gathered from others with post-polio which might be effective with CHFers are: 1) Explain all the health and disability issues as if you are talking to a five year old. (2) Don't be too conservative when estimating the effects of the disability, pain or health. While you want to be honest about your limitations, too often we underestimate the effects so as not to sound too wimpy. Remember the reviewer is trying to weed out those that are overstating their disability and may be prone to discount your problems, so you may need to compensate for this discounting. I hope this helps some of you as you file for disability. I have heart failure and still work full-time. I am compensated very well at this point so I have not applied for SS disability. dlshick@yahoo.com


Mary Anne's October 20 reply to Jean's October 15, 2004 - Hi Jean, I had an artificial mitral valve implanted in 02/2000 and so far it has worked just fine, clicking away. I think if you are otherwise in good shape, I would go for the repair rather than medication. It's better to go in on a planned basis than on an emergency. What kind of medicine prevents mitral regurgitation anyway? Are you sure they are not using "ageism" against your getting the repair? mmp@nauticom.net
 
Jon's note: Standard CHF meds can work if the cause is heart enlargement preventing the valves from "fitting" properly. As the meds shrink the heart closer to normal size, valve function improves.


Bill, October 20, 2004 - Hi, I've been in cardiac rehab for about five weeks now and I feel good. When it comes to lifting or carrying anything I get sick like I have the flu, and I was wondering if anyone else has the same problem. I'm going back to the cardiologist this week so I'll see what he has to say, but want to hear from the rest of you. I am on a 10 lb weight limit. Maybe I should listen once in awhile. I still like to see if I can still roar, but I guess not. bj5250@yahoo.com


Stephanie's October 20 reply to Chuck F's October 12, 2004 - Hello Chuck, Thanks for the recommendations. I hope that by the time I am five months out from the smoking, the cravings will be gone. Like you, I am finding the worst of the cravings are when I'm doing something that I truly associate with smoking like drinking my morning caffeine, after a good meal, etc.
     I am still having some severe side effects from my meds and from what I've been reading, it's probably the Coreg. I will tolerate as long as I can. Regarding the nurse practitioner, my PCP has a nurse practitioner in his office who is extremely helpful and an advocate of self-help and learning. She is a great lady and I feel fortunate to have her around.
     My insurance has also recommended that I participate in a rehab program with LifeMasters (charting daily weight, blood pressure, etc,..., with weekly calls from a caseworker. It sounds like a good program to me but I'm still new at all this. I mentioned it to my cardiologist and he thought it was a good idea. I know what I've read on their web site, but was wondering if anyone has any additional comments or info on this type of program? Thanks, Stephanie. howsare.s@att.net


Peggy A, October 20, 2004 - First of all, I want to say that I haven't visited this site in a long time. Basically, I got kind of down on myself for having this condition in the first place. I got to the point that I wanted to say forget taking all this medication, I'm too young for this - and quit taking it. However, I didn't do that. My doctor changed me from Coreg and Mavik to 2 less expensive drugs - Captopril and metoprolol - because I seriously threatened to quit my medications due to the cost. Even though I have insurance - both medical and prescription - I still couldn't afford the copays that were involved.
     Saturday was a semi-bad day for me. My Sunday school class took an excursion to Natchez to tour some of the antebellum homes. I went along and stayed with them quite well with all the walking we were doing until we went down the hill. The hill is rather steep and going down was fine, but coming back up was another story. I had to stop 2 or 3 times before I finally made it and then had trouble getting my breathing regulated. I finally did and went on with everyone to dinner and back home to Jackson. I fell asleep during the drive back and finally got home about 1:00 AM. I enjoyed the trip but have realized I can't keep up with that group of high energy and fast paced people, so no more trips of that nature with them!
     I had fallen off the exercise wagon and wasn't really doing any, so that's one reason I had so much trouble. Well, starting this week, one of my co-workers and I have begun walking at lunch. That woman is in great shape, so keeping up with her is a challenge but I've managed to do it fairly well thus far. I guess I need some encouragement and that's why I came back - anybody got any encouragement to spare? Thanks for reading and allowing me to share this. pegalford@its.state.ms.us


Mark C, October 21, 2004 - Hi, I am age 37 and have had heart failure since I was 30. I am really frustrated because my function seems to go down due to anything - cold, allergy attacks, pneumonia, etc. As you all know, it takes several months for my heart to repair damage that can be done in only 2 or 3 days.
     I wonder if anyone has a CHF specialist they would recommend in the Decatur/Huntsville, Alabama area. God has done a lot for me and has blessed me and my family. It is frustrating to watch my weight go up when the humidity is high as well as just feeling terrible. My doctor discounts the humidity as affecting me. I would like to talk to another one. mcollier@outdrs.net


Elizabeth K's October 21 reply to Bill's October 20, 2004 - Congrats on rehab, Bill. The exercise ranks right up there with beta-blockers in my book. My cardiologist guffawed greatly when I first asked about weight lifting and gave me a lecture about the greater cardio demands from upper body versus lower body exertion. Your rehab therapist can probably give you a lot of good education on this aspect of activity and heart failure.
     It is a different can of worms from exercising the lower body. I had to strip all the weight plates and start gently with just the rods and work up over months. I'm still not back to full capacity but I'm comfortable with most activity. Time and patience seem to be the keys. You sort of have to sneak up on it by getting the skeletal muscles very efficient without telling your heart you're making big demands - low and slow, lighter weight using more reps. (Jon's note - that's actually a very good way to put it, I may quote you on this one.)
     When your cardiologist says it's safe for you, your rehab therapist can probably help you out even if upper body isn't part of the rehab program, and Jon has some good articles and links. At the early stages, it just helps to know that work above your shoulders and any upper body work is super demanding and will cause a lot of fatigue for what seems like very little effort. Wishing you happy treadmilling. WmOccam@aol.com


Sherri, October 21, 2004 - Hi, I was wondering if anyone has had experiences or insight with unwanted weight loss. My dad recently had a BiV pacer plus ICD implanted but has been losing a bit of weight - he is a thin man. His weight is essentially steady on a daily or weekly basis, but over the past couple of months it seems that the weight has gone down a couple of pounds rather than up. His appetite is okay (he never ate a lot) and based on info from this great site, I saw the importance of TNF-alpha. Is it important to get this checked? Have any of you had to try and gain weight? Thanks again Jon, for such an amazing site. email_src@yahoo.ca
 
Jon's note: Drugs that targeted TNF-alpha failed pretty miserably in trials so having it checked may not do any good. Celacade by Vasogen may be helpful for high TNF-alpha levels but it is still in trials.


Sandy's October 21 reply to David R's October 20, 2004 - Hi David, I too lost all energy with heart failure. CoQ10, although it is a bit pricy when bought without added ingredients such as salt and fillers, seems to be the best one I have found. I felt the difference within a week. I also read an article that Tai Chi exercise is helpful. Good luck to you. bleuskiiisgrl@yahoo.com


Sandy's October 21 reply to Peggy A's October 20, 2004 - Hi Peggy, Please, don't give up. It's a struggle I know, but you're worth all the extra energy. Try some energy boosters. CoQ10 is one I have seen give results. I had no energy in the early days of my diagnosis with CHF but now that I'm off it for several months, I do feel the difference. Good luck to you! bleuskiiisgrl@yahoo.com


Louisa, October 21, 2004 - Hi everyone, I am 31 years old and was diagnosed with heart failure six months ago. I was hospitalised and took a month off work. I have come a long way since then. I went on an overseas trip last month with my friends and had no trouble keeping up with them. I am interested in knowing if any of you or any of your friends or family who have heart failure been able to successfully have children. I realise that it is not something I can even consider right now, but I am interested in knowing for future reference if it is at all possible for me to start a family. Thank you. louisawfchan@hotmail.com


Pam's October 21 reply to Peggy A's October 20, 2004 - Hi Peggy, It helps me to read uplifting quotes. Perhaps these will be meaningful for you. "Do the things you believe in, in the name of love, and know that you aren't alone, we all have doubts and fears." by Carole King. "You must do the thing you think you cannot do." by Eleanor Roosevelt. "No pain, no palm; no thorns, no throne; no gall, no glory; no cross, no crown." by William Penn. pam_smallwood@yahoo.com


Ron, October 21, 2004 - Hi everybody, Again I want to say what a great site this is and thanks to Jon for all the hard work he puts into it. I've just finished phase 2 of cardiac rehab and start phase 3 next week. So far the major benefit has been the confidence it gives me to do things physical. My EF is 15% and I have LBBB. I'm scheduled for another thallium stress test in a few weeks and am concerned about going all out on the treadmill. Presently I'm getting my training pulse rate between 70 to 90 beats per minute. My resting pulse is around 53. Also, my blood pressure sometimes after exercising is 80/50. Any comments? ronr@kw.com


Loretta D, October 21, 2004 - Hi everyone, Currently I have heart failure, cardiomyopathy, sleep apnea, and a few more problems. I am expecting to be approved for gastric bypass surgery because my weight is 370 pounds and I am 55 years old and have never been able to keep it under control. Since I trust this group so much, I would like to ask, when I go in for the surgery will I still be taking my Coreg, Cozaar, fluid and potassium meds during surgery and recovery?I know as I lose weight, some of it might need adjusting but I was wondering if it affected anesthesia? cast.netlorettad7@comcast.net


Pat, October 21, 2004 - Hi, Do you recommend any particular brand for the vitamins and CoQ10 mentioned in The Manual? Thanks for this great site. Pat. patsears01@wmconnect.com
 
Jon's note: Not personally, but maybe others have some favorites.


Sherry L's October 21 reply to Peggy A's October 20, 2004 - Hi, I know what you mean about the hills. That is where my heart health shows up. Our long driveway has an incline and to walk back up it can leave me out of breath. I don't think the heart healthy person would even notice the incline. It seems inclines and hills bother me more than stairs. Because of this I have not volunteered to go on band or choir trips with my teens and that really bothers me, but I can stay pretty active in everything else.
     About exercising, wouldn't ya just love to have a personal trainer? <g> One that can tell you if you are doing enough exercise or not. I never know how hard I should push myself so I tend to do nothing. A friend and I are trying to work out a time to go to a local pool to at least walk around in the water and swim a bit. That should help.
     I get down once in awhile too. I am 49 and have lived with heart failure and hypertension for 9 years. When I am down I really need to remember to count my blessings as they are plentiful. Keep your chin up! birdseed1955@hotmail.com


Vicki's October 22 reply to Michelle D's October 19, 2004 - Hi Michelle, We got my husband on it first time around by listing all of his problems truthfully. Heart naturally, but also depression, anxiety, and memory problems. The more you can tell them and the more precise you are, the better. Good luck. walleye1@netins.net


Vicki's October 23 reply to David R's October 20, 2004 - Hello, My husband was having the same problems recently and his cardiologist reduced his Coreg and now he has much more energy, less shortness of breath, and is not as tired. That might be something you should have checked out. walleye1@netins.net


Yvette's October 23 reply to Quentin's October 14, 2004 - Hi, I have been in your shoes for the last 8 years. I was diagnosed with heart failure (PPCM in 1996 and a-fib in 1998. I applied for SSD in 1997 and was approved after only 3 months of waiting, but because of a personal situation and not wanting to ask for too much help I decided to go back to work, but only part-time. That worked for about 5 years until the company I worked for no longer offered part-time work and I needed to work.
     I spent two years working 9 hour days, not including taking care of my child. Now unfortunately I am unable to work. My EFis 23% resting and went down to 19% during a stress test. Approval was no problem for me. I do understand how the idea of not working full-time can be a bit disheartening. However, you are young and need to think about being there for your family. With the right meds and watching your diet, things can be great, I pray for the next 20 years or more.
     However, if you don't take care of yourself and you feel wiped out when you get home at the end of the day, you are doing no one a favor by working. If you do decide to stop working now, you may want to think about volunteering somewhere. That will get you out of the house but will not totally obligate you to be there. If you feel bad one day it would be easier to stay home, but if you are working that is not an easy decision to make because you would feel obligated to go to work.
     Remember that you being there for your family comes before any job. Also remember that only you and your family are really going to have concern for your health. Don't think of it as being selfish for wanting to love your family and be there for them. Think of it as loving your family so you must do everything possible to be there for them. That is where your obligation lies. finch32219@yahoo.com


Steven Denton's October 23 reply to Peggy's October 20, 2004 - Hello Peggy, I am sorry to hear you had that bad day with your group. We all must learn that after our heart failure or heart condition we are not the same people we were before the illness. In some cases we are better than before. I began walking more after my quadrple bypass in September and am now up to 4 miles a day. I may never be as active and play tennis like I did before my heart problems, but I will do some of that stuff again and more importantly, I will be alive longer. Hang in there and stop judging yourself against the energy levels of others because everything you do now is a miracle and a gift. redwolverwing@cs.com


Carla's October 23 reply to Louisa's October 21, 2004 - Hello and welcome, I am now age 36 and have viral cardiomyopathy. I have been told to not have children. Since I've only been married for a little over a year, this is very devastating. I'm not sure of the cause of your heart failure but my advice would be to sit down with your doc (hopefully a heart failure specialist) and possibly a high-risk obstetrician and put it all out on the table. You're still young enough that there's definitely time for improvement in your function, but only your doctors can advise you because they know your situation.
     Trust me, it's been the hardest thing I've ever had to accept. I was diagnosed in January with an EF of 25% and only now am I able to sit down with my husband and doctor to discuss a tubal ligation. I keep hoping for a miracle but then I realize that I'm living the miracle. I was diagnosed and have a chance to live. Children are wonderful, but they're also a lot of work which I don't have the strength for. My husband and I have decided that we're going to grow old together and do what we want to do. My prayers are with you! carla@cnbt.com


Peggy A, October 23, 2004 - Hi and thanks everyone for the encouragement - it is helping! I am still able to work although it gets kind of frustrating and stressful at times because of all the responsibilities I seem to shoulder. I have a couple of coworkers who have no idea what my medical status is because I haven't told them. Well, those two seem to take off more than they come in and work, if you understand what I mean by that. As a result, since I'm their designated backup, I have to cover for them. Since I haven't told them, they have no idea the stress their absence can cause me but if they knew, I still don't think they'd care about anyone but themselves. I do have others who try to help me when it gets to be too much, where and if they can, and I find myself having to just sit down and stop and take a couple of deep breaths before I can continue.
     One of my other coworkers and I have begun trying to walk 15 to 20 minutes daily, either at lunch or on break. I'm staying up with her pretty well. This woman is healthy as a horse as far as I know and she moves at a fast pace, though I think she's been slowing it to help me keep up. Thanks again! pegalford@its.state.ms.us


Bill's October 23 reply to Elizabeth K's October 21, 2004 - Hi, Thank you very much for your reply. I now have more understanding of what maybe the the reason is why I get sick when lifting. I don't think the rehab people quite get the point. They give me a puzzled look. I know they don't understand what it is like to have heart failure and all the goodies that goes with it. Thanks again. bj5250@yahoo.com


Pat S, October 23, 2004 - Hello everyone, I was started on a calcium channel blocker and then changed to low-dose beta-blocker (Toprol-XL). These significantly increased my shortness of breath and weakness. Has anyone else had the increase of symptoms when starting either of these? If so, does the increase ever go away? Thanks for your reply. patsears01@wmconnect.com
 
Jon's note: This is expected and in most people, but not all, it does go away. See the Coreg page.


Michelle D, October 23, 2004 - Hi, Does anyone know how to get triglycerides down? I have a total cholestrol level of 144 and my triglicreride level is over 300! I am diabetic and I have found certain foods like rice and pasta are definitely not foods I should eat often. I am trying to lose weight and have been doing alright but every time I get bloodwork done my triglycerides are high. I don't eat a lot of fried or fatty foods anymore and I do as much exercise as I can. It is not much but I am up to a one mile walk twice a day. I still get out of breath and tired, but I am maintaining this level until I am not as huffy. I refuse to scale back the walks since it has taken me since June to get up to this level. Any suggestions would be apprecieated. Also, thanks to everyone who e-mailed me with SSD suggestions. escomeesh@hotmail.com


Steve H's October 23 reply to Loretta D's October 21, 2004 - Hello, I had an ileostomy on October first. I continued taking my regular heart medication for the entire time I was in the hospital. I take Coreg, amiodarone, and spironolactone. The only thing they seemed concerned about was if I was taking a blood thinner. I hope this helps. Steve. wwarthog@alltel.net


Sandy's October 23 reply to Pat's October 21, 2004 - Hi Pat, I don't think the brands really matter. Look for "no fillers" such as salt and other nonessential ingredients. Price is also a factor. In trendy vitamin shops, CoQ10 with E can go for as much as $60 for 100 gel tabs at 100mg. Walgreens has a good 2 for 1 sale once in awhile. Shop around and good luck to you! bleuskiiisgrl@yahoo.com


Amy, October 23, 2004 - Hi everyone, Watch your meds when in the hospital. I had surgery on September 23rd and I was in the hospital for 10 days. One day the nurse and a student nurse brought me my morning meds. Then the nurse walked away with one of my pills. I asked the student nurse why she took my pill away. She said, "Well, your blood pressure is low so you don't need it." I said wait a minute, I take Monopril for heart failure not for blood pressure. She said oh and and went and spoke to the nurse. The nurse came back in and gave me my pill and apologized to me. She also thanked me for reminding her that Monopril is used for other reason also besides just blood pressure. So please keep an eye on your meds when your in the hospital. Take care, everyone. Amy. smeltzy@charter.net


Elka's October 23 reply to Louisa's October 21, 2004 - Hi, Having children when you have a cardiac condition is very risky business. Cardiomyopathy is something that can occur in healthy women during pregnancy because of the strain that pregnancy puts on the heart. So women with an already existing cardiac condition would definitely be putting themselves at some risk having children.
     Ever since I was young, the topic of having children has been something that has been talked about in my family because my mum, who had DCM, had me and my brother, which caused further severe damage to her illness. She died at the age of 39, only a few years ago, and I've always had issues about the fact that she chose to have children, though I must admit at the time the doctors knew little about DCM and didn't advise her not to have children.
     As I am getting older though, I realise that I want to have a child because being a parent is the hardest but most privileged job in the world. Luckily, because I had a transplant I can now have children but I know before that, it would have been a definite no from the doctors. There is one thing to keep in mind as well. I was born with DCM and it may possibly run through my family and so there is a chance I could pass on the illness to any children I may have. For those who have cardiomyopathy and though may only be suffering from it in adulthood and the cause is unknown, it is worth keeping in mind that genetics may have a role in it and to be aware of that when deciding whether or not to have children.
     Unfortunately, not enough research has been done to determine the genetic factors in cardiomyopathy, though the Victor Chang Cardiac Research Institute in Sydney, Australia is doing much research into this field and I only hope that sometime in the near future we will have some answers. peel416@mail.bigpond.com


Quentin, October 25, 2004 - Hello all, Thanks for all the replies and comments. If I haven't replied, my apologies. I am nearing my end. I went down last Monday evening due to increased pressure in my chest, and thought it was indigestion. Well, needless to say, no one knew eactly what the cause was so I spent 2 days in the hospital and gave blood and was given an echo. Finally, Thursday, I was told what the deal was: I've hit the "end-stage" and my doctor is worried because I was not expected to hit end-stage so quickly. So, I've been chosen to be in a research study that my cardiologist is heading up for plasmapheresis. This process is generally done to patients after transplant but not before or so I've been told. Needless to say, my delimma to work or not was set straight by my wife and cardiologist. I'm part-time for now, but I am to expect a change in that.
     I'm pretty excited about it all. I am looking forward to participating in the trial, but if it doesn't help my case, than I'm definitely going on the heart transplant. Anyway, Jon and everyone, thank you. I've learned a lot and all the right questions to ask, thanks to this site. quentinj2003@hotmail.com


Joanne, October 25, 2004 - Hello, We have had a bad month. Chelsie has been having a lot of trouble the past several weeks. We have had numerous doctor visits, lots of blood work, 2 emergency room visits and no answers. At the begining of the month she became increasingly more tired. She started complaining of body aches and headaches. Her leg hurt so badly she could not bend it. We went to the pediatrician and they called the cardiologist. The pediatrician was worried about DVT (deep vein thrombosis - blood clot) and just wanted to send us to the local hospital for ultrasound. The cardiologist insisted that we go to the emergency room at Duke 2 hours away.
     We went to the ER and the cardiologist did not even come to see her. After waiting 5 hours, we were seen by the cardiology fellow on call. She ordered an ultrasound which showed nothing. The blood work looked good so back home we went. We got home at 4:00 in the morning. Anyway, we had to go back to the pediatrician in the morning for her shot. We went home after the shot and Chelsie went to bed. She went to school on Friday and called me. She was really feeling weak. She said she felt like she was going to pass out.
     We went back to the doctor. They did all kinds of blood work. Saturday we ended back up at the ER at Duke. This time they did an echo and said there were no remarkable changes. They upped her blood pressure meds and sent her home. Monday we were back at the pediatrician. This time her head hurt and her stomach was upset. The only thing they found was that her potassium was in the low-normal range. I have been making sure she is eating more potassium and some of the symptoms have gotten better. Because they did not find anything specific wrong with her (she was actually sick to her stomach Saturday) they want her to be seen by a psychologist. She has an appointment this Wednesday with her cardiologist at Duke and goes to the psychologist next Wednesday.
     I do not have a problem with her seeing a psychologist. At age 14 this is a lot to deal with. However, it seems that since they did not find anything physically wrong (what they considered wrong) that she must be imagining the pain. I do not know about anyone else but when I am hugging the comode, it is not imagined. Has anyone had any experience with lower potassium? Can it cause some of the problems she was having even though it was the low side of normal range? mjcb@northstate.net


Jon's October 25 reply to Joanne's October 25, 2004 - Hi Joanne, I am really sorry Chelsie has been feeling so rotten. What bothers me is that when MDs start referring a patient to a psychologist, they often quit working at finding a physical cause for the problems at hand. Chelsie knows when her body is pitching a fit and her doctors should be getting creative and searching the literature and calling other doctors until they either find a potential cause - and treatment - or she gets better. I've had this kind of problem as well but with different symptoms. My doctors just sort of gave up and blew it off as something either not real or not "findable." That's horse puckey!
     Tell Chelsie that Jon says it's a good idea to talk things out with a psychologist but she should never mistrust her own senses when they tell her that her body has, or is developing, a new symptom or problem! She's bright and has a good attitude and I'd hate for some doctor to bring her attitude down. To both of you, hang in there. Jon.


Carla's October 25 reply to Michelle's October 23, 2004 - Hi everybody, I just went through a big scare last week as my sugar and triglycerides shot up and my doc feared I was diabetic. Well, after 2 weeks of starving (no salt, no sugar, no bread or potatos, no caffeine) and taking 2000mg fish oil (1000mg morning and 1000mg evening), my triglycerides went down from 315 to 220 in 2 weeks and my blood sugar stabilized. I buy the coated tablets, so I don't taste fish all day! Good luck. carla@cnbt.com


Larry O, October 25, 2004 - Hello, I read recently that beta-blockers can lower HDL. Can anyone verify this? My HDL reading after going on Coreg was lower. loconnor33@rogers.com


Venita's October 26 reply to Joanne's October 25, 2004 - Hi Joanne, This must be very frustrating for you and your daughter. As a nurse I know that vomitting causes a lower potassium level. Have the doctors considered doing a CT of the abdomen to see what's causing the vomiting in the first place? I don't believe that the pain she is experiencing is imagination. Venita@aol.com


Tony Myrick, October 26, 2004 - Hello, I live in Alabama. I am 46 years old and have had cardiomyopathy since 2002. My ejection fraction was 22% when I found out I had this. I use the University of Alabama (UAB)heart center and my doc is Dr. Bourge who is director of meds for the center, the top guy before you see Dr. Kirland himself if you need a transplant. I was glad he took my case and I was scared because he only sees the worst cases. Alabama is lucky to have UAB since they are one of the top heart centers in the world.
     I had neck fusion surgery 5 months ago and had 2 discs removed and had plates and screws put in. Pain has been a nightmare. It has run my blood pressure up and down even with all the good meds for blood pressure I take. I had my ejection fraction up to 50% at last year's annual visit but it's dropped to 20% to 30% and my heart is enlarged again. I found this out 6 weeks ago and I go back for retesting next week. I am on some better pain meds to keep my blood pressure at bay.
     Jon has done a great job at putting this site together. I wish I had found it a couple of years ago. I found out mostly what I know here and there on the Internet. Jon's got all the info right here on one web site. I think Jon has inspired me to see that you can live for awhile with this terrible disease. I have had problems with my left heel hurting and when I found out on his site that this is a problem some others with this disease have, it shed new light on my condition. Also I know what he means about feeling weird like you know you're going to die. I have felt that twice and it feel sort of like a small panic attack with shortness of breath and a sense of doom coming to mind.
     But anyway I know there's hope if Jon has had this for 9 years and had a 13% ejection fraction. I hope the best for each and all of you good luck. Roll Tide! Tony. ynotmyrick@yahoo.com
 
Jon's note: The day after Thanksgiving Day this year I will have been diagnosed with heart failure for 10 years and I'm still going!


Steven Peter's October 26 reply to Yvette's October 23, 2004 - Hi all, There have been many posts describing the various work scenarios that we as CHF patients, are in. It only demonstrates how different, yet alike, we all are. I was diagnosed over a year ago and cannot imagine going to work again. I have yet to get SSD but have a hearing in December. My last EF was 20%. There are good days when I tell myself I can do anything. If I do, then I pay for the next two. I really agree with Yvette's comments about this issue and so does my spouse and family doctor. My obligation is to my family. Returning to work could shorten my life and would take all my energies. I would rather live poor than do that. Next Tuesday I have to convince my CHF doctor of all of this. Life decisions are sooooo hard. shpdwcopa@msn.com


Dave T, October 26, 2004 - Hi Jon, You recently made a post where you said you had switched from Ambien to another perscription medication to help you sleep. What is the medication you now take to help you sleep? I find Ambien no longer works for me. davejthib@hotmail.com
 
Jon's note: I now take triazolam, brand-named Halcion. I take a very small dose, usually 0.125mg.


Scott Brown's October 26 reply to Louisa's October 21, 2004 - Hi Louisa, Elka has done a good job of articulating two of the primary elements of your question: Should a person with heart failure consider having children? A heart failure specialist would be the best person to consider discussing this question with.
     In my case, I obviously do not have to worry about additional damage from the trauma of childbirth. However, I do have to worry about passing along a bad protein to my offspring. My cardiologist did not think the chances of passing this problem along was very high. When I think about it, although I have heart failure, my quality of life has by and large been worthwhile until now.
     Having a supporting spouse is another part of the equation. My energy level is not as good as it should be. I have a one year old baby. As a result, my wife spends a disproportionate amount of time with the baby and I get all of the quality "lying on the couch" time with the baby. <g> Please keep us updated if you decide to take the plunge. Scott B. kitchenerguy@rogers.com


Patricia P's October 27 reply to Jon's October 20, 2004 - Hi Jon, You are so right about meds sometimes helping leaking valves. I know it's different for different people, but medication has worked well for me. When I was diagnosed with heart failure, cardiomyopathy and leaking valves over three years ago, I had 2+ mitral valve regurgitation. It is now leaking only a trace amount. I also had two other valves leaking a trace amount that don't seem to be leaking at all anymore. I take Coreg, Altace, Lanoxin, spironolactone, Bumex, potassium, CoQ10, Prevacid, and vitamins. Thank you again for this wonderful site! Patricia P. pgp24815@aol.com


Patricia P, October 27, 2004 - Hi all, I am having a strange problem that I feel silly even asking about, but it is really bothering me, so here goes. I am finding that lately I sometimes confuse words when I am having a normal conversation, not often, but occasionally. Today my doctor asked if I had been having chills and I said that I had some cheese on Friday. She laughed and said that she had also had cheese. Boy, was my face red. Could it be the meds? Wishing you all wellness. Patricia P. pgp24815@aol.com


Dale E, October 27, 2004 - Hello everyone, My dad is down in the dumps again. It seems like a cycle, but the down stages last much longer now with not a lot of hope in sight. Once again he is not very hungry, has no energy, can't sleep, and is basically like a zombie. He has had some a-fib episodes in the past few months. He has a pacemaker to regulate it to a certain degree. He is not retaining that much fluid and his blood work is pretty good.
     Is this the progression where even though on paper things look okay, that you go through? He is currently on Pacerone, which from what I hear can be a nasty drug. Could this be the cause of some of this stuff? Has anyone taken it for months at a time? We are going to get another opinion from a CHF specialist since he has been seeing a cardiologist the past 6 months ever since his main cardiologist moved. Since this time he has gotten so much worse that hopefully things will get better with this other doc. Let me know if anyone has had similar episodes. God bless. Dale. Homecapitaldale@hotmail.com


Aaron, October 27, 2004 - Hi, I'm age 28 and was diagnosed last April with heart failure. Since then I have had an LVAD implanted and am doing well. I was on a transplant list up until one week ago when studies showed my heart has recovered to the point of considering removing the machine and I am currently off the transplant list for Toronto. mailaaron@hotmail.com


Karen, October 27, 2004 - Hello all, My dad has heart failure. He is frustrated with the care he has received from the cardiologists in his area of Myrtle Beach, South Carolina. He now has the distinction of what a CHF specialist is so my dad is now looking for one in his area or even the southeastern USA. He is especially interested in a specialist that is recommended by patients, so I am asking readers in this forum for any recommendations. Thanks. kcharay@earthlink.net


Kathy H, October 27, 2004 - Hi, Is tachycardia the same thing as having extra heart beats? I had a holter monitor done Friday and my cardiologist just phoned me and said "there are a lot of extra beats." He told me to double my Toprol-XL, saying "take another one right now." I am scheduled for an echo tomorrow. I went for a complete workup because my rheumatologist wants to put me on humira and he needs to know the state of my heart failure.
     I've been having a lot of rapid heart beats, SOB, and generally feeling like I'm wiped out just climbing my stairs. If extra heart beats are tachycardia, I'm getting scared because when I was first diagnosed with cardiomyopathy and CHF, I had a couple of nasty strings of tachycardia - enough to make them consider a biventricular pacemaker. kathy_in_wlsv@yahoo.com


Bill, October 27, 2004 - Hi everyone, I just wanted to tell all of you that my SSD was approved first time out. I can't tell you what a relief it is. We thought we would go broke first and were getting pretty close. Can anyone tell me about back pay? Thanks to all. bj5250@yahoo.com


Michael S, October 27, 2004 - Hello, I have been diagnosed as having "mild cardiomyopathy" with an EF of 49%, which I was told is low normal. Does anyone else out there have this diagnosis? My EF has stayed exactly the same since I was diagnosed last year and the cardiologist told me that whatever caused the cardiomyopathy stopped at that point and it would probably stay there. Is that true?
     As you can probably tell, I don't trust my cardiologist much. Any advice would be appreciated. I'm not on any drugs and was told to come back in a year for another echo. Thanks. sellers.michael@verizon.net
 
Jon's note: You should go on an ACE inhibitor immediately, and since he did not put you on one at diagnosis, you should get a new cardiologist.


Chuck F, October 27, 2004 - Hi everybody, Well, I just returned from 6 days in the hopital after having the Dor procedure and man oh man, did I learn a lot as well as go through a lot. My EF has improved 7% and should continue to improve over the next several weeks. I have had many, many discussions with other nurses that have cared for heart failure patients as well as two well-known doctors in the cardiothoracic field. I will fill you in more later - I can't type much right now. Thanks for everything. chfrancis@adelphia.net


Rita Carrillo, October 27, 2004 - Hello, My husband died suddenly on April 9, 2004. The autopsy report said he died of hypertensive cardiovascular disease and that his heart was enlarged. My question is: He went to the doctor every three months and was never told he had high blood pressure. He was given a clean bill of health and told he had low cholesterol. He also had a chest x-ray and was not told that he had an enlarged heart. He even had an echocardiogram the year before and it was normal. So I am wondering why his hypertension and his heart size were not ever reported to him. He didn't even know he had heart disease so how could he have known what to do to stop his sudden death? lovelyritak@juno.com
 
Jon's note: If he had a clean bill of health, why did he go to the doctor every 3 months? Just curious.


Joanne, October 27, 2004 - Hi all, We took Chelsie back to Duke for her follow-up with the cardiologist today. She is happy with Chelsie's heart function. Her electrolytes look good and her potassium level has come back up. She is not terribly concerned with Chelsie's energy level. She said she expects her to be tired but still wants to wait as long as possible before doing any valve replacements. She said they want to keep her valves as long as possible because once they get to the point of replacing her valves we will have a whole new set of problems and limitations. We know the valves need to be replaced and they want to wait as long as possible to do the replacements but I am trying to find out what types of problems the replacements will cause. I thought replacements would make her better. mjcb@northstate.net


Jon's October 27 reply to Joanne's October 27, 2004 - Hi Joanne, I think the problems involved with post-valve repair are very minor compared to Chelsie's current problems, and that a valve repair or replacement would indeed help her. A valve repair should not cause any problems other than the risks involved in any heart surgery. Be sure to look into mitral valve repair done via cath. I will send you a pdf file on this from last year to your e-mail address.
     Valve replacement is either with mechanical or porcine (pig) valves. Since Chelsie is so young, mechanical is probably preferred to eliminate regular replacements needed down the road with porcine valves. The one "problem" with mechanical valves is that usually, an anti-coagulant (blood thinner) is needed for the rest of your life. This is a very real problem. However, if it improves her heart function and quality of life, it may be something that doesn't look as much like a "problem" to Chelsie as it does to her doctor. Check into web sites like www.valvereplacement.com for others' experiences after valve surgery.
     Since mortality in CHFers is worse when mitral valve leakage is present, waiting and waiting does not make sense to me (see http://info.chfpatients.com/Mitral_valve_leakage_and_mortality.txt). Besides, if Chelsie can feel a lot better after valve surgery, at her age, she should be allowed that improved quality of life! On the down side, surgery carries real risks, so weigh any decision carefully. Jon.


Fabian, October 27, 2004 - Hello, I am new to this site but not new to CHF. I simply did not realize how serious it was and when I did (about 3 years ago) I thought my only hope was a heart transplant. I am on a home dobutamine drip being worked up for the transplant. I have had some really narrow escapes so if anyone lives in the Seattle area and wants to know what doctor to avoid, write me.
     This site is wonderful and finally I have some hope that if I manage my heart failure properly, I can get better. As I am sure many of you already know, the end stages of CHF are not pleasant. My kids have been so traumatized by my worsening condition that every time I go into the hospital it is a strong shock to their emotional well-being. I have already started reading more about CHF and diabetes, and have changed many of my dietary and health care habits.
     It is so reassuring to realize this site is here and that the man behind it isn't using a cash register to measure its success. fabian.acosta@metrokc.gov


Elka's October 28 reply to Joanne's October 27, 2004 - Hi Joanne, When I had my heart transplant I had the opportunity to donate two healthy valves from my old heart to someone in need. I was told by the doctors and nurses that with valve replacement in young girls or women, real valve tissue is used. This is because if artificial valves are used then the patient will need to remain on blood thinners for the rest of their life, as blood tends to coagulate around artificial materials in the body. This means that the female patient is unable to ever have children because obviously they will bleed excessively when giving birth. This is important for Chelsie to know because she is so young and may want to have children later on in life.
     Bear in mind though, that if human or pig valve tissue is used, Chelsie will need to go on anti-rejection therapy medication to stop her body from rejecting the foreign valve tissue. Such medication does have many side effects including increased suspectibility to skin cancer, increased blood cholesterol levels, tremors and a variety of others. In my opinion, if there is a chance that Chelsie could have children and wants to when she gets older, the anirejction medication is worth putting up with because as mentioned recently in this forum, becoming a parent is a wonderful thing. peel416@mail.bigpond.com


Jon's October 28 reply to Joanne's October 27, 2004 - Hi Joanne, Please do lots of research before talking to Chelsie's doctor, and be sure Chelsie does the same. Valve repair is always a better idea than valve replacement if it is possible so research this in combination with her condition very, very thoroughly. If you need some professional level information, e-mail me and I will ask questions for you of cardiothoracic surgeons.
     My reading shows that with porcine valve replacement, antirejection therapy is not necessary.Porcine valves commonly last 5 to 15 years, so after receiving one, Chelsie would need heart surgery again - and again.
     With mechanical valve replacement, a woman who becomes pregnant usually is switched to heparin during pregnancy because unlike warfarin, heparin does not cause birth defects. These are things to research before talking to Chelsie's doctor again. Be sure to read the American College of Cardiology Guidelines on valve replacement as well.Jon.


Jacky, October 28, 2004 - Hi everybody, I have been taking amiodarone for four years and it is very effective. Is it possible to start side effects at this late date? I am having a worsening problem with dizziness and weakness, mostly in the morning. I feel really terrible until the afternoon and then things improve. I take the amiodarone first thing in the morning. I have been blaming Coreg, which I take with breakfast and dinner and have been on for two years, but I am beginning to wonder. I don't have this problem after the evening Coreg. jackymwb@earthlink.net
 
Jon's note: In general, any drug can cause side effects at any time, even after taking it for years with no problem. This could be either drug or something else entirely. Talk to your doc for sure.


Sue, October 28, 2004 - Hello, This site is awesome! I was wondering if anyone could give me advice on how best to help a loved one through heart failure. My husband had heart failure a week ago and is coming home tomorrow. I love him so much and drive him crazy "hovering" over him. Any advice? I'm trying to remain calm and trust that he will let me know when he needs help, but I am so afraid. Any words of advice would be appreciated. Thank you, Sue. mae@canada.com


Pam, October 28, 2004 - Hi all, I have been on bisoprolol for blood pressure but have gained about 10 lbs since starting this med a year ago. My cardiologist said some people gain weight on beta-blockers. Has anyone else experienced this? She suggested I switch to 5 mg Lisinopril, an ACE inhibitor. I read that a chronic cough is common with this group of drugs. Is that true? Are there any other side effects of concern? I appreciate any feedback. Thank you. pam_smallwood@yahoo.com


Bill's October 28 reply to Patricia's October 27, 2004 - Hi Patricia, This is such a great site because no matter the problem, someone else can relate to it. I asked my doctor the same thing because at times I would wonder, what in the world did I just say. In my case he said my confusion was caused by sleep apnea. Between that and the heart not working as well as it could be, my mind doesn't work as well. My wife says she doesn't see much of a difference. Oh well. bj5250@yahoo.com


Tom S' October 28 reply to Karen's October 27, 2004 - Hi Karen, Your post concerning a hunt for a cardiologist in the Myrtle Beach area of South Carolina reminds me of how I came to the conclusion it would not be a good area for me to live in. We only live an easy four hours west of Myrtle Beach (the first hour spent trying to get out of Charlotte, the second trying to get around Conway, SC) and I really feel better at the beach than inland. So we bounced around the idea of moving to a little town called Socastee, which is part of that strip of megalopolis that runs for about 50 miles up the coast of South Carolina right into North Carolina.
     I spent a solid two weeks looking for homes, possible businesses and most importantly medical facilities. I had great difficulty even finding the local hospitals and when I did I almost laughed at how small they were. They resembled clinics more than hospitals. After getting through the giggles I asked myself a question everybody should ask before moving to "paradise" and that is, "What happens if I get sick, really sick?" Is there a modern, fully equipped, all specialties medical facility that can treat me and my family? If not, perhaps you should forgo the so called Balhalas of the world and be more sensible in living in an area with good medical facilities. We are surrounded with them here in the greater Charlotte area.
     As far as Myrtle Beach goes they still have to pay registered nurses a signing bonus just to work there, so I imagine they are still bereft of decent medical facilities and personnel. Good luck in your hunt. bigheart@muchomail.com


Scott Brown's October 28 reply to Aaron's October 27, 2004 - Hey Aaron, That sounds like very positive news. Do they think it was a virus that brought on your cardiomyopathy? Do they actually go in and remove the LVAD? The cardiologists in Toronto General are among the best. Thanks, Scott B. kitchenerguy@rogers.com


Linda, October 28, 2004 - Hello, I have just been told I have heart failure. Does anyone know of a CHF doctor in the southern Georgia/northern Flordia area? I just found your site and thank you for it. wmb@southlink.us


Louisa, October 28, 2004 - Hi everyone, Thanks to all of you who answered my questions about heart failure and pregnancy. This web site has helped me a lot. Being diagnosed at 31 and having to be hospitalised immediately came as a big shock to me, especially since I'm an Aussie ex-pat living and working in Japan. It's really good to be able to read about other people's experiences and to know that I'm not alone. Also, it's comforting to have access to people who understand how I feel. I've had a few people write to me directly and if you wish to do so, that's fine. Regards, Louisa. louisawfchan@hotmail.com


Stacie H's October 28 reply to Jon's October 27, 2004 - Hi Jon, I'm an oldie who checks this wonderful site periodically for new information. It has been very helpful to me over the 7 years that I have had CHF. In your reply to Joanne about Chelsie, you mentioned that CHFers who have mitral valve leakage also have a higher mortality rate.
     Is there a difference between someone who has CHF because of mitral valve regurgitation, or someone who has mitral valve regurgitation because of CHF and an enlarged heart, stretching the valve and thus causing the leakage? I'm also curious to know if everyone that has an enlarged heart, has valve regurgitation? Also, should the amount of regurgitation correlate with how enlarged the ventricle is? My ventricle is very minimally enlarged, but my mitral valve leaks moderately to moderately severe. You are still doing a great job with the site! Thank you. JAX4me2oo@aol.com


Jon's October 28 reply to Stacie H's October 28, 2004 - Hi Stacie, Actually, everyone has valve leakage to some degree. It's like EF never being 100%. Most people with hearts enlarged due to illness have increased heart valve leakage, as far as I know. If you have heart failure due to faulty valve function, repairing or replacing the valves involved should significantly improve heart function and heart failure so that would not really apply.
     Valve function that worsened due to heart remodeling will usually improve after time on beta-blocker and ACE inhibitor, although it is impossible to guess how much improvement will occur. It can be tough to know which came first since people who think they are healthy don't have echos to compare with after getting heart failure. <g>
     Long-winded as usual, my answer really is, "I don't know." If anyone has good information sources on this, please let us know. Jon.


Nick's October 29 reply to Michael S' October 27, 2004 - Hi Mike, I am no cardiologist but what your doc said about your being stable and probably not deteriorating further sounds like a bunch of hooey. With an EF of 49% your heart is either weak or you have exceptionally high blood pressure. Either way, it is having trouble pumping, is stressed, and would benefit from an ACE inhibitor (which also lowers blood pressure). Also, as has been stated on this site many, many times, the ACE inhibitor is "the standard of care" for those with any kind of cardiomyopathy.
     Please do yourself a favor and look for a cardiomyopathy specialist - a cardiologist who specializes in cardiomyopathy patients. The bread and butter of the average cardiologist is atherosclerosis, not cardiomyopathy. packupletsflyaway@hotmail.com


Jon's October 29 reply to Bill's October 27, 2004 - Hi Bill, For the first 5 (or possibly 6) months after your approved date of disability, you get no money. If it takes longer than that to get approval, you will receive month 6 (or 7) through the time of the first check as "back pay." I am very glad to hear you got approval first try! Jon.


Evelyn, October 29, 2004 - Hello everyone, I was diagnosed a little over a year ago with heart failure (dilated cardiomyopathy) and was told that I also had a leaking mitral valve but they showed not much concern over that. My EF was approximately 20 to 25% at the time. Three weeks ago I had another echo and my EF is down to 15% and my mitral valve is still leaking and now the triscupid valve is leaking as well. Is this common? From all that I thought I understood, the right side of my heart was not affected. I was very concerned before, but not afraid. Now I am afraid. I just need reassurance that this happens, is common, and just another one of those things that you should come to expect but doesn't mean that you are any closer to meeting with your maker. Thank you for all that you do. This site is the best, Evelyn. eviefor3@aol.com


Susan B's October 29 reply to Sue's October 28, 2004 - Hello Sue, Welcome to the board. I am sorry that you have to be here. My husband has DCM; you did not say why your husband has heart failure. After almost 4 years of being ill, my husband (now age 49) can just bring himself to say that he is ill. I have to watch him to know if he is having a bad day and needs help or not. I suggest the following steps:

  1. Read The Manual. It will take some time but it is time well spent. You need to know just what beast you are dealing with. My husband is doing very well, most days, but he he gets a little ill then he goes downhill very quickly. You need to be prepared. I have a list of the meds to take to the doctor or ER. The doctor's offices just copy the card for his file.
  2. Put up a weight chart. My husband will write down his weight every day. However, I have to read it and see if he needs to make changes based on a rapid weight gain. He did not even say anything the weekend that he gained 8 pounds in two days. I caught it quickly and called the doctor's office seeking treatment advice.
  3. Get big pill boxes and help him (if he will let you) get the meds out a week before and put them in the daily boxes. My husband is so good at this. We order meds at least 2 weeks before they run out. Also this helps check that all the meds are being taken. My husband likes me to help with this step. He puts his meds out every Sunday night like clockwork.
  4. Get a plan with his doctor(s) and know it.
  5. Know his routines. My husband gets gout and most people, including his parents, really don't notice that he is having problems walking. I really look at him and notice little changes like if he needs to rest more or less than normal. I listen to how he is breathing. I look at his nails and lips to see if they are blue at all. I notice how he moves and what he eats. Maybe it is overkill but he says that most days he likes it that I can tell that he is ill without him having to tell me. It would be nice if he would tell me, but he lives in the land of denial and in his mind he is still well.

I thought about making him face up to the fact that he is ill, but why? He follows his plan: He takes his meds, exercises, and eats most of the right foods. What would I gain by having him see that he is ill - nothing. So he gets to live in the land of denial until it causes problems and that day may never come. I think that he is doing better believing that he is well overall than if he was worried about everything. My husband doesn't like anyone to know that he is ill.
     After all, he doesn't look ill. He is on a blood thinner so he wears a tag to show that he is on it. This is so important for first responders to see in case he is in an accident. My husband was a fire fighter before he became ill. Now he is a dispatcher for 911. I ask questions about his health. He is good at poker, and he can fool most people but he can't fool me most of the time. I hope that I answered your question. Good luck, Susan B. gbratcher@kc.rr.com


Steven's October 29 reply to Sue's October 28, 2004 - Hi Sue, As one who has been in your husband's shoes, I can tell you the best thing you can do for him is to make sure he knows you are there to help if and when he needs it. Physical help is great for the first few weeks when he is in a weakened state. Moral support is also always needed.
     It doesn't do anyone any good if you stand hovering over him asking him if he is all right every twenty seconds. Let him gradually ease back into whatever life he can and encourage him to exercise in whatever manner his doctors tells him to. Focus on what he and you can do now, not what you can't do.
     If his diet is radicially changed, as most of ours are after heart failure, don't just go for the steamed vegatables and fish/chicken diet. There are a ton of great foods and recipes out there for those of us on low salt/low fat diets. Good luck with your new lives. redwolverwing@cs.com


Joy's October 29 reply to Kathy's October 27, 2004 - Hi Kathy, I am addressing your question about extra beats and if they are the same as ventricular tachycardia. As a cardiac nurse and a cardiomyopathy patient, I would answer no. Extra beats usually are premature ventricular contractions but they can be atrial contractions also. In order for a "true" atrial tachycardia there must be at least 3 consecutive beats occurring at a frequency greater than 100 per minute. For ventricular it must be at least 3 consecutive beats greater than 60 beats per minute. Usually the rate is about 150 to 200 beats per minute during such episodes.
     Sometimes physicians and nurses refer to extra beats as ectopics or even "skipped beats" and palpitations. If you are having V-tach most professionals refer to them as just that, or she's having a few "runs" or "just had a little run." My Holter monitor report recorded 3,400 in a 23 hour period - not normal! Am I aware of them? Yes, most definitely and I have been for years prior to my diagnosis of cardiomyopathy.
     When having numerous extra beats and sometimes little runs I too experience more tiredness and SOB. I have not had caffeine in my tea or coffee since leaving my career after the onset of cardiomyopathy. Once in awhile someone will slip me a cup of the real stuff and it does have an immediate effect on my skipped beats. Stress also increases them. It's hard not to have some stress with a heart disease, isn't it?
     I was also considered for a biventricular pacer together with an ICD. I tried an increase with my Coreg and it has helped quite a great deal. Also consider your electrolytes, especially potassium. Low or high potassium level can make skipped beats a lot worse.
     After pulmonary edema and receiving 300mg of IV Lasix, my potassium levels were of course low and I was having frequent runs of V-tach. When loking at recordings of your heart it is very important to look at the extra beats and to verify if they appear the same or different. Different looking ones might arise from a different focus (different part of the heart) so these are usually of a greater concern. Another most important factor is, how is the person tolerating these extra beats and are they symptomatic?
     I hope I have not confused the issue. Having these things is most annoying and can be quite alarming. Sometimes it is difficult to know when to seek medical help, especially with a history of PVCs. I think perhaps the biggest comfort for myself is having an EKG and the result is "no changes from your last one." I am aware that as a heart increases in size or cardiomyopathy worsens so can skipped beats. It is a very good idea to get them checked out to see if the muscle is doing something it shouldn't be doing. Joy. pjkachel@aol.com


Norma, October 29, 2004 - Hello Jon, You were right in stating that no antirejection drugs are necessary with the pig valve. My late husband had two operations to replace the aortic valve and both times opted for the pig valve. Unfortunately, he suffered TIAs anyway, so he had to go on Coumadin but he was in his 70s so others who are younger may not have that problem. Norma. normadroz@aol.com


Lowell, October 30, 2004 - Hi, I am new to this site. It sure is a good one! I had a heart attack in 1974 that left me with a 45% ejection fraction. Early this year I went to the doctor not feeling well and suspected heart problems. A nuclear stress test gave me a 25% EF and an echo gave me 35% EF. My doctor said that because I could walk with no angina I must be okay and told me to go ahead and make the trip I was planning.
     When I was in Wisconsin (I live in Arizona), I had a heart attack and a subsequent five-way bypass. I come home with a prescription for Lasix, metoprolol and Coumadin. The cardiologist here turned me over to a physicians's assistant. They said I had a 30% EF. I hear a lot about Coreg and other good drugs, and began to wonder if I was really getting the state of the art treatment so I made an appointment with a CHF specialist at the Mayo Clinic. I am 78 years old. Jon, do you think I did the right thing? Lowell. Lpepper3m@aol.com
 
Jon's note: Absolutely, without question. Good for you!


Ann Lau, October 30, 2004 - Hello everyone, I have not yet read about the flu vaccine and cardiomyopathy. I have not yet had a cold since being diagnosed. Every first is quite frightening to me - very! So I figure I do not need the flu, I just might get more than frightened should I get it. I have been out for the shot four times and bombed each time, leaving in the dark and hours ahead of opening. This is in South Carolina. My cardiologist, my oncologist, and my internist all say, "Go out there and get it, but we can not get any." Let me hear your experience and how important is it really, quite apart from quieting my fears. annlau@davtv.com


Marty, October 30, 2004 - Hello all, I'm 43 years old and have DCM, LBBB, and got an ICD about three months ago. (What great acronyms we have! <g> I've been doing fine, finally reached 25mg BID on Coreg. I also take take Ramipril and am getting ready to start taking Inspra next week. This week I developed an upper respiratory infection (URI). Jon, I think I read somewhere you said Coreg had been consistent with people getting URIs. Mine started with sinus drainage, then a sore throat, and this morning I woke up with no voice! I've never lost my voice before and it is driving me nuts! I also have a sporadic but productive cough. Of course, my first concern was whether this cough is related to my DCM (and I suppose everything is) but I'm pretty sure it's a garden variety URI.
     My question is what to do over this weekend. Is it okay to go ahead and take a cough medicine? I'd like to take an expectorant to loosen up the junk in my throat, but I'm hesitant. I have an appointment to see my heart failure nurse practitioner Monday, but would like to get some relief before then. Please shoot me some recommendations, and thanks in advance. marty.culleton@rs.af.mil


Hal, October 30, 2004 - Hey Folks, I hope all is well with you all and that you all survived the summer all right. I need help with something right now. My hands and feet itch like fury. I've changed soap and blankets and etc,..., but to no avail. I also get little welts that look like small hives here and there. It generally starts after I've eaten and is driving me nuts.
     Please advise about some type of med. I live on SSD so running to the doctor at $120 minimum isn't an option. Come on now all you fine folks, what works that is cheap and needs no prescription? Benadryl, maybe? It's starting to takes its toll on my sleep which is the best part of living right about now. uncahal@webtv.net
 
Jon's note: If it is an allergic reaction, Benadryl will help, but it won't address the cause, which is what you need to discover.


Sangeeta Bhagwat, October 30, 2004 - Hi all, You can read one perspective on caregiving online or download it free at www.stormpages.com/sbhagwat/. It was written by a primary caregiver with 13 years experience with hypertension, heart disease, and chronic renal failure. S.Bhagwat. sangeetabhagwat@hotmail.com


Sue, October 30, 2004 - Thank you for your kind responses about my concern about my husband. The good news is that he's home now. Yahoo! He actually looks like a million bucks but I know he hides it well. He had pulmonary edema a week ago, and they're not sure what caused it yet. He gave up smoking in July after 40 years of cigars and pipes. Two weeks later he had pneumonia and had been trying to shake it ever since. He was also diagnosed with high blood pressure, high cholesterol and a supraventricular tachycardia.
     A week ago his cardiologist (I was at the appointment) said he was fine and they changed his pills to control his tachycardia. Two days after seeing his cardiologist he had the edema. It was scary! They kept him in a week and gave him a cath but he didn't have a blockage. In two weeks he goes for an echo. They're not sure what caused the edema, but his meds seem to have worked. I'm trying to calm down and not hover, and allow him to find his way with this. I just love him so much and I'm going to try to concentrate on enjoying the moments with him and try not to think of the future.
     Thank you so much for your help! I really appreciate it. mae@canada.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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