The paperwork never ends The Archives
July 16-31, 2003 Archive Index CHFpatients.com

Michael's 7-16 reply to Norma's 7-13     ask a pharmacist and more
 
Nadine 7-16     seek experiences improving circulation
 
Katherine H's 7-16 reply to Nadine's 7-16     yoga, massage and more
 
Jim B 7-16     seek back to work experiences
 
Pat 7-16     seek experiences stopping Lasix
 
Joy's 7-16 reply to Nadine's 7-16     yoga, massage and more
 
Robert S' 7-16 reply to Pat's 7-16     experience stopping Lasix
 
Ben B's 7-16 reply to Jim B's 7-16     experience with Disability and working
 
Walter K's 7-17 reply to Pat's 7-16     experience with stopping Lasix
 
Bernard Z 7-17     question about a-fib and CHF
 
Jon's 7-17 reply to Bernard Z's 7-17     a-fib and CHF
 
Mike's 7-18 reply to Bernard Z's 7-17     a-fib and CHF
 
Bernard Z's 7-18 reply to Jon's 7-17     a-fib and CHF
 
Jon's 7-18 reply to Bernard Z's 7-18     a-fib and CHF
 
Cecil 7-18     water weight and meds questions
 
Cecil's 7-18 reply to Sharon's 7-8     condolences
 
Natalia's 7-19 reply to Jim B's 7-16     Social Security Disability and working
 
Joe S 7-19     humidity worsens my CHF
 
Caitlin W 7-19     are echos so subjective?
 
Jon's 7-19 reply to Caitlin W's 7-19     subjective test results
 
Thomas 7-19     are there any other teachers here?
 
Valerie R's 7-19 reply to Caitlin W's 7-19     subjective test results
 
Valerie R's 7-21 reply to Thomas' 7-19     teachers with heart failure
 
Caitlin's 7-21 reply to Jon's 7-19     it's a big web site, SSD experience
 
Darlene 7-21     what can I do about swollen, painful legs?
 
Jon's 7-21 reply to Darlene's 7-21     a few suggestions
 
Tracey C 7-21     Frog Ranch salsa
 
Pamela 7-21     seek experiences having ICD battery changed
 
Jim 7-21     is memory loss & drastic fluid loss usual?
 
Sheryl C's 7-21 reply to Darlene's 7-21     life with diabetes and CHF
 
Kate's 7-21 reply to Jim's 7-21     dehydration and mental function
 
Steve H's 7-22 reply to Jim's 7-21     drastic fluid loss and mental function
 
Valerie R 7-22     update, potato chips, recipe request
 
Dee L 7-22     got a new heart and more
 
Caroline 7-22     what should I expect now? & more
 
Thomas' 7-22 reply to Valerie R's 7-21     teaching with CHF
 
Cat 7-22     seek experiences with Zetia
 
Hal 7-23     how & where do I buy discount drugs?
 
Lee 7-23     seeking advice on these symptoms
 
Donna's 7-23 reply to Cat's 7-22     I just started Zetia
 
Hal 7-23     seek weight gain with Coreg experiences
 
Joseph P 7-23     what not to eat on Coumadin?
 
Jon's 7-23 reply to Joseph P's 7-23     what not to eat on Coumadin
 
Shannon's 7-23 reply to Jim's 7-9     CHF specialist suggestion
 
Valerie R's 7-23 reply to Thomas' 7-22     teaching activity level
 
Susan G's 7-23 reply to Joseph P's 7-22     vegetables and Coumadin
 
Valerie R's 7-23 reply to Joseph P's 7-22     eating while taking Coumadin
 
Brenda H 7-23     what are accurate weight scales?
 
Lane C 7-23     seek support resources in Dallas, Texas
 
Cristina L's 7-23 reply to Tracey's 7-21     Frog Ranch sodium levels
 
Gene O's 7-23 reply to Joseph P's 7-22     vitamin K counts
 
Cat 7-24     could this have been from Lasix? & more
 
Sheryl C's 7-24 reply to Lane C's 7-23     coping with too much time
 
Monica 7-24     sure need some input on these things
 
Gene O 7-24     Coumadin information resources
 
Katherine H's 7-24 reply to Monica's 7-24     diabetes a possibility
 
Valerie R's 7-24 reply to Monica's 7-24     please talk to your doctor
 
Cat's 7-25 reply to Monica's 7-24     blood work a good idea
 
Margaret D's 7-25 reply to Lee's 7-23     reflux experience
 
Sharon 7-25     low sodium frustration & more
 
Joanne R's 7-25 reply to Monica's 7-24     please be careful & more
 
Monica 7-25     I really need to drive
 
Jon's 7-25 reply to Monica's 7-25     is it that important?
 
Sheryl C's 7-25 reply to Monica's 7-25     please see doc immediately
 
Lynn D 7-25     low tension glaucoma warning
 
Greta's 7-25 reply to Hal's 7-23     buying meds online, Coreg and more
 
Monica's 7-25 reply to Jon's 7-25     driving is important
 
Joanne R's 7-27 reply to Sharon's 7-25     low sodium recipes and cooking
 
Joe S 7-27     driving and weather
 
John Len's 7-29 reply to Joe S' 7-27     earthquake experience
 
Dave K's 7-29 reply to Joe S' 7-27     that will shake you up
 
Zona 7-29     seek EECP info and experiences
 
Amy W 7-29     seek suggestions on feeling in chest
 
Jimmie B 7-29     seek experiences overcoming lust for salt
 
Joyce 7-30     is cold and clammy reason for concern?
 
Nancy S 7-30     do I need new doctor?
 
Greta's 7-30 reply to Amy's 7-29     please see your doctor
 
Greta's 7-30 reply to Jimmie B's 7-29     eating low sodium
 
Sharon's 7-30 reply to Nancy S' 7-30     communicating with doctors' offices
 
Valerie R's 7-30 reply to Jimmie B's 7-29     eating low sodium
 
Kathy's 7-30 reply to Jimmie B's 7-29     eating low sodium
 
Jimmy B 7-30     eating low sodium
 
Jon 7-30     please ask some questions
 
Mel G's 7-30 reply to Zona's 7-29     EECP experience
 
Valerie R's 7-30 reply to Kathy's 7-30     low sodium grocery shopping
 
Bob 7-30     dry heaves question
 
Joanne R's 7-30 reply to Jimmie B's 7-30     eating low sodium
 
Valerie R's 7-31 reply to Jon's 7-30     more pacemaker information
 
Ruthie A 7-31     does anyone take Edecrin for diuretic?
 
Kathy 7-31     eating low sodium
 
Jacky 7-31     medical records costs
 
Lane 7-31     eating low sodium
 
Lane's 7-31 reply to Nancy S' 7-30     dealing with doctors' offices
 
Valerie R's 7-31 reply to Kathy's 7-31     no salt added chips are best
 
James 7-31     is anyone in this same boat?
 
Kate's 7-31 reply to Jon's 7-30     my CRT pacemaker experience
 


Michael's July 16 reply to Norma's July 13, 2003 - Hi Norma, I would suggest your pharmacist. Most of them are pretty knowelegeable about drug interactions. Also, if you have access to a Veterans' Administration hospital or clinic, they have an excellant pamphlet concerning vitamins and herbs that interact with meds. I take amiodorone, Coreg, Digoxin (lanoxin), Atacand, Rabraprozole, Zyban,and sodium ducosate. No-nos for me are St. John's wort, bilberry, ginseng, and a few others that I can't remember at this time and I have misplaced the list. I live in a 19 foot travel trailer so most of my possessions are in boxes and file cabinets in a storage building.
     I also have way too much calcium in my system, so added calcium suppliments in foods and vitamins are not in my best interest. Read the labels on vitamins as well as foods. Michael. michaels@grantspass.com


Nadine, July 16, 2003 - Hi, Has anyone explored different methods to help with circulation since our hearts can't pump as efficiently? Has anyone tried massage, exercises that won't harm you, a trampoline, or anything like this? Your doctor will tell you if it's okay to exercise, but specifically what kind of exercise? I know walking is good and easy to do. After I spend a few hours in the garden I always feel better, even though in the beginning I have to push myself. Also, what about deep breathing techniques to bring more oxygen into your body? What about oxygen and chelation treatments? Is anyone trying any of these methods with any improvements? ndicks@panynj.gov


Katherine H's July 16 reply to Nadine's July 16, 2003 - Hi Nadine, I have found that walking up to 10 miles a day (total for the day), massages, and yoga all seem very good for my heart. Yoga teaches you some great breathing methods. The Ornish Program includes yoga as part of their daily regime if you are interested in going that route. I hope that helps. kholian@msn.com


Jim B, July 16, 2003 - Hi, I have a question for the forum. I just had to do a stress test and echo for Unum. I found out my EF went up to 25% resting and 35% after exercise. I did 13 minutes on the treadmill and reached the target heart rate of 155. Today My doctor says I'm no longer disabled. I know Unum will cut me off as soon as they get this result. I still get SSD and my review is due in 10/04.
     In February of 2002, my doctor said I was totally disabled. In July it's a miracle and I'm no longer disabled. What should I do?
     I'm going to inquire about the Ticket To Work program but I'm scared and confused about the future. I want to work but I don't want to rush things. My intial EF in 04/2001 was 16%. Has anyone been through this and do you have any advice? I'll keep praying on this but any words of wisdom will be appreciated. jamburns@msn.com


Pat, July 16, 2003 - Hi, I saw my cardiologist yesterday and he advised me to stop Lasix for awhile. My last blood test showed that my kidneys were dehydrated. I am diligent about my liquid and sodium intakes. I am a little nervous about no Lasix since I will be traveling for a week and won't have as much control over my sodium intake as at home. I will be seeing my PCP every other week now. I will have a MUGA in September. Jon, thanks for the info on the MUGA on this site.
     I am curious if anyone else has been told to reduce or stop Lasix. I take 40mg Accupril BID, 6.25mg Coreg BID, and 0.125mg Lanoxin once a day. pat_hammond@mindspring.com


Joy's July 16 reply to Nadine's July 16, 2003 - Hi Nadine, I am 59 years old. I have DCM and CHF. I also have osteoparosis and I am in remission from breast cancer. I have been receiving massage therapy for about 8 years. When I was first diagnosed with CHF, I was unable to continue my massage therapy for about 9 months. Deep massage was diverting oygen from my heart. My EF at that time was around 20%. Last October it was 40%.
     My massage therapist started out slowly and we have a routine that is easy on me and yet provides for a wonderful feeling of total relaxation. I do believe it is very important to have a therapist who is registered, able to discuss and understand your medical condition.
     In addition to massage therapy, I receive Raiki once a month. I also do deep breathing exercises and I am taking a yoga class this fall. Yes, I believe it has helped me. When I become anxious regarding my numerous PVCs and other arrhythmias, I unconsciously hold my breath and of course I become more SOB. The deep breathing with pursed lips exercises really help me. I'm not too sure if it is my drugs, massage Rx, or my frequent prayers to the Lord, but my feet and hands are no longer cold and white. I personally believe it to be the Lord acting through all of these avenues. My EF being up certainly plays an important part. I hope this is of some help to you, Joy. Pjkachel@aol.com


Robert S' July 16 reply to Pat's July 16, 2003 - Hi Pat, Like you, I was extremely nervous about going off my Lasix. I took 40mg furosemide daily and my doc told me I no longer had to because I was not retaining fluids. He told me to first cut down to 20mg and then after a week at that to stop completely. I said I was terrified, but you can always take some Lasix with you if you need it. If you start to retain fluids, especially when you have less control over your diet, take a pill.
     Another valuable bit of advice my doc told me: Watch your intake of fluid-saturated fruits, like melons! They are so good this time of year, but they are bad for our fluid intake. rsterner@ucla.edu


Ben B's July 16 reply to Jim B's July 16, 2003 - Hi, First of all, your numbers are borderline: You could fight it if you want. However, it sounds to me like you want to try working. My EF rose from about 15% to 40 to 45%. My doctor told me I was no longer disabled. I wanted to go back to work, but I did not have a job and didn't want to lose my Medicare before getting back to work.
     I fought UNUM and they kept me on, and I also fought SSD and they kept me on. SSD will work with you I think, but UNUM will not. Anyway, I did find a job and get back to work. My suggestion is to try to buy some time with UNUM and SSD while you look for a job. If you already have a job, level with SSD and they will set you up with a trial work period. At least in my state, they have been great. As long as they know you are trying, they will not hassle you.
     I'm working now. UNUM cut me off almost immediately, but I'm still recieving full SSD along with my salary, and will continue to do so for one year. I thought I was the only one this ever happened to. Good luck. bdbrinkman@juno.com


Walter K's July 17 reply to Pat's July 16, 2003 - Hi Pat, I was on 40mg Lasix daily a year or so ago but now I take it only if I need it, and that decision is left up to me. My CHF doc is in full agreement with this. I take it now only if my ankles start pitting or if I suddenly gain weight. No problems. whknoth@yahoo.com


Bernard Z, July 17, 2003 - Hi, My CHF specialist tells me that CHFs with sinus rhythm do no better (whatever that means) than CHFers with a-fib, provided they (the a-fib folks) have a good coagulant factor. Is this gererally accepted in the CHF community? If this is correct, I see no point in attempting a third cardioversion. Am I all wet? Bernard. bernardz@cox-internet.com


Jon's July 17 reply to Bernard Z's July 17, 2003 - Hi Bernard, Sinus rhythm just means a normal heart rhythm. I don't have time right now to look it up but I think your CHF doc is mildy wet - he may be correct as far as heart-related mortality but I don't think he is right about mortality in general or about quality of life. Jon.


Mike's July 18 reply to Bernard Z's July 17, 2003 - Hi, The opinion of the cardiologist at the university medical center and my own cardiologist is that there are no studies suggesting that people in a-fib live less long than people in normal sinus rythym. However, in most cases it means you will take Coumadin the rest of your life. There may be other symtoms that we suffer but I don't seem to see them here. It seems the symtoms seem to be pretty standard with everyone having some of them. msisbell@earthlink.net


Bernard Z's July 18 reply to Jon's July 17, 2003 - Hi, Thanks for the quick response, Jon. The fact is, my quality of life in better now than when I was in sinus rhythm. I feel better now that I have in many, many months. Go figure?! Maybe that's why my doc wasn't anxious to do a third cardioversion. Also, my heart rate is irregular but not fast - usually in the high 80s or low 90s. Thanks again for all the good work you do for us CHFs. God speed! Bernard. bernardz@cox-internet.com


Jon's July 18 reply to Bernard Z's July 18, 2003 - Hi Bernard, Like you, if I feel good, I see no reason to mess with the current game plan since it is obviously working. With heart failure, I have decided that if the boat is sailing smoothly, it's better not to rock it. <g> Jon.


Cecil, July 18, 2003 - Hello everyone, I was taking 200mg of amiodarone. My hands started shaking and I was told I had thyroid problems. The doctors think it is because of the amiodarone. He cut my amiodarone to 1/2 tablet once a day and gave me methimazole to take 3 times a day. Now my high thyroid levels have gone in the opposite direction and very dangerously so.
     My question is: I was doing so well; my EF was 55% in January and I was taken off Lasix. However, lately I am adding a little water weight. I take 20mg Lasix and it goes away but then a day or so later it is back. Could this be thyroid-related or methimazole-related? When I took my Lasix today I hardly went to the bathroom at all today so now I wonder what is going on.
     I am heading to my primary care doctor tomorrow since he is monitoring my thyroid. I would appreciate any feedback anyone has. Thanks. cecil_419@msn.com


Cecil's July 18 reply to Sharon's July 8, 2003 - Hi Sharon, I am sorry to hear about Phil. It sounds like you made a tremendous difference in his life. What we all need is a good friend like yourself! cecil_419@msn.com


Natalia's July 19 reply to Jim B's July 16, 2003 - Hi Jim, Remember that if you say nothing now, you still get SSD payments until the SSA says you are no longer disabled in 2004, regardless of what your doctor says now. You can just say you felt better on your own and decided to try working. You can work up to 9 months as a "trial work period" and still get benefits. Also, if SSA says you are not disabled anymore in 2004, you still get 2 to 3 months payment of SSD. After that, it would be over, unless you go into an extended period of eligibility. Pick up a "red book" at an SSA office. It has everything you need to know. I would also recommend calling the Department of Social Services in your county and making an appointment with a benefits counselor or social worker.
     From what I read, and I am no social worker, I would recommend that you inquire with someone at the DSS about a vocational rehabilitation program in your area. The folks at SSA state that if you participate in one, your benefits may continue until the vocational rehab program ends. "To qualify you must participate in a program before your disability ended under SSA rules, and SSA must review the situation and decide that your continued participation in the program would increase the likelihood of your permanent removal from the disability benefit rolls."
     Good luck and congratulations. Natalia. Natalialama@cs.com


Joe S, July 19, 2003 - Hi, Some time ago there was a long discussion here about humidity and CHF. Well, yesterday was the highest humidity this area (eastern California) has had in years, and last night I wheezed and sweated up a storm just like I did 5 years ago. So in my opinion, humidity does affect our heart conditions. jes@gbis.com


Caitlin W, July 19, 2003 - Hi, When I went to the cardiologist's for the first time last December I was in a-fib and the echo showed my ejection fraction at 15%. In April, a different doctor did an echo in the emergency room and said my EF was 50% and that my heart was normal size. Three weeks later my cardiologist did another echo and said my EF was 25 to 30%. I told him the other doctor said it was normal. He said, "Well, someone else's 50% might be my 330%." Are these tests really so subjective?
     Also, my cardiologist says I have 4-chamber dilated cardiomyopathy. The emergency room doctor said my ventricles were normal size and that my atria were slightly enlarged. What gives with these differences? I have had several chest x-rays in the last 6 months. X-ray readers have routinely said my heart is not enlarged. I sure would appreciate some comments about this. Caitlin. caitlin@thestraight.com


Jon's July 19 reply to Caitlin W's July 19, 2003 - Hi Caitlin, Yes. See the echo page (Reading Echo Results) for more about the lack of standardization in reading echocardiogram results. Jon.


Thomas, July 19, 2003 - Hi, Just last week (07-07-03) I was hospitalized for CHF and didn't know I had it. After a week of tests, meds, and monitoring, I was cleared to return to work as a special education resources elementary teacher. I just found this site and am very thankful for all posts! Are there any other teachers out there? Thomas. thomascox66@hotmail.com


Valerie R's July 19 reply to Caitlin W's July 19, 2003 - Hi Caitlin, My doctor frequently tells me that much of medicine, like reading an echo, is an art and not a science. I'm finding that to be more and more true. Valerie R in Miami. vgrogers@aol.com


Valerie R's July 21 reply to Thomas' July 19, 2003 - Hi Thomas, I am a teacher. I was diagnosed with an EF of 15 to 20% back in January of 1995 but was well compensated and taught 8th grade regular and advanced English easily for 7 years more. I had trouble this year and was in the hospital 3 times, and I am planning to retire this summer. I do not really want to stop but the school has become difficult and after 35 years, it is perhaps time. I do plan to work part-time at a private school if I can. vgrogers@aol.com


Caitlin's July 21 reply to Jon's July 19, 2003 - Hi Jon, Thank you for reminding me. I recall I did read that last year when I first got sick and didn't understand a word of it. I believe I have followed about every link on your site at least once - what a feast. I have spent so many hours online learning about my conditions. Your site is the best and most complete. It is exhaustive. The interconnections are mindboggling. I have had so many open windows on your site from jumping around, my toolbar can't even show the first letter. What a blessing for us all to have you online!
     By the way, I got SSD yesterday. I got it in 90 days, start to finish of application. I did not expect that so I had planned for a long haul. I have helped others get SSD and SSDI, and every one of them got turned down the first time, so I am amazed. In spite of my experience, I think people would be very wise to use your pages on SSD in their planning. Thank you for your loving tending of this site. Caitlin. caitlin@thestraight.com


Darlene, July 21, 2003 - Hi, Having just been diagnosed with CHF, I had many questions and this forum has helped quite a bit. Still, I sit and worry every moment. I am also diabetic, have high blood pressure, and have a hard time doing anything since falling out of the bathtub and really messing up my back. Now, I wonder every day what is going to be next.
          I am having a very hard time figuring out how to cook for diabetes and heart failure. Do you have any suggestions or know of any such cook books available?
     I also take 160mg Lasix a day and my feet and legs are just absolutely swollen and in pain; I can't even touch my shins they hurt so badly. I have told my primary care physician this and he has done nothing. When I lie down at night the swelling in my feet goes down but then it's back up the next day shortly after rising. I don't think the swelling in my legs ever goes down. Is there anything to control this pain and swelling available? What am I doing wrong that has created this uncomfortable feeling? Ifeel as if I am at my wit's end with worry and pain all the time. Thanks for the help. dddunn@coxinternet.com


Jon's July 21 reply to Darlene's July 21, 2003 - Hi Darlene, Here are some suggestions: If possible, fire your doctor and see a heart failure specialist immediately; if you're overweight, start losing weight; reduce your sodium intake (in your diet) to 1000mg or less every day; reduce your fluid intake (including soup, jello, and pudding) to no more than 2 liters a day. Jon.


Tracey C, July 21, 2003 - Hi everyone, Just in case you use the Frog Ranch Salsa, be aware that they have either changed their ingredients or they've correctly updated their labels to show the correct amount of sodium. One jar used to be 360mg, but now it's 40mg per 2 tablespoons, which adds up to 560mg a jar. Take care, Tracey. 2tcollins@cox.net


Pamela, July 21, 2003 - Hi Jon and others, A little about me: I was diagnosed over 2 years ago woth CHF and DCM, probably postpartum. Anyhow, my heart was enlarged and my EF was 25%. At my next echo it went up to 35 to 40%. This year my echo showed no heart enlargement and an EF of 55%.
     My battery needs to be replaced in my ICD. I believe it is a St. Jude model. How have others responded to having it changed? Is it as big a deal as having the first surgery done? How is recovery? If anyone can respond to me, I would appreciate it. Thank you. pamelaa@cwnet.com


Jim, July 21, 2003 - Greetings everyone, I just wanted to update and ask a question. My father had his pacemaker/ICD put in 07/07/2003 (2 weeks from tomorrow). It has been a rough ride, but things are somewhat better now. He had a few days of a-fib, but went out of that on Friday. He was admitted to the hospital for 2 days to get more water off him. Over the first night, he dropped 13 pounds. In the last week, he's dropped 18 pounds. Has anyone ever heard of such a dramatic loss? He's on Lasix and the doctors believe the pacemaker is doing its thing, but that he had excess weight that just couldn't get pumped off.
     Also, has anyone experienced memory loss? I'm wondering if it's related to the medicine, or is it the oxygen levels? His oxygen count has been good, but I didn't know if anyone else had experienced these things. I appreciate the chance to share with everyone here. It's given me encouragement, and helped me realize the condition. Jim. jiminmanjr@yahoo.com


Sheryl C's July 21 reply to Darlene's July 21, 2003 - Hi Darlene, A lot of us are diabetic also. It is a real challenge to find the right foods. You must cut way down on your carbohydrate intake. Basically, you get protein in the form of fish, fowl or red meat if you like it, and lots of veggies. Fruit is great too but watch amount and water content. A serving of grapes is around 12. Count them and measure your carbs.
     If you are overweight, then with your new (I echo Jon in hopes that you get a new one) doctor's okay, start doing exercise; even if it is only walking around your house for 5 minutes. It's a start! Talk to yourself and see if you get out of breath. If you do, stop. If you have chest pain, stop. However, if you make it, hug yourself and do it again the next day. Slowly increase your exercise time, I mean by minutes.
     If you are out of shape, even 10 minutes can seem daunting. Just do what you can comfortably do and so what if it is "baby steps?" You have to start somewhere. Ask your doctor for guidelines.
     If you have been living to eat, you must make a big life change now - not just go on a diet but make a commitment to living a quality life. Remember that spices, flavored vinegars, lemon and chilies are your new best friends! Sheryl C. cvprehab@hotmail.com


Kate's July 21 reply to Jim's July 21, 2003 - Dear Jim, Dehydration may be a factor in the memory loss situation. That sounds like a huge fluid loss in a short time. When a person becomes dehydrated due to overdoing in the heat, the body draws fluid from everywhere it can, but only draws fluid from the brain as a last resort. Unfortunately, diuretics are not selective and routinely draw fluid from the brain.
     My husband always knows when I've overdone the diuretics because I get downright stupid. Sadly, because I get so stupid, he has to tell me to cut back on my diuretic because I can't figure it out on my own! I always know something is wrong, but I just can't figure out what! Like most things about this disease, it is a balancing act. Please ask his doctors about the possibility of dehydration. Kate. tothymecottage@frontiernet.net
 
Jon's note: Fortunately, the human brain has an excellent system for protecting the brain from losing dangerous amounts of fluid!


Steve H's July 22 reply to Jim's July 21, 2003 - Hi Jim, I lost 40 lbs of water weight in 10 days when I was first diagnosed. Lasix has been a life saver for me. I have short-term memory loss also. I think it is that the heart is not pumping as well, so the brain gets less oxygen. I also get cold in my toes and fingers. I hope this helps. Steve. aholland@alltel.net


Valerie R, July 22, 2003 - Hi everyone, I just want to say I am doing well after my third hospital visit of the school year and with my biventricular pacer turned off, the resynchronization part. I have talked to 3 people this week who have had problems with biventricular pacemakers, and I am curious if there are more out there.
     On a less serious note, I have found 2 no-salt kinds of potato chips: One is Aunt Lisa's from Wise and another is called Charles Chips no salt. Now what I need is a recipe for a good onion or spinach dip. Does anyone have one? Valerie. vgrogers@aol.com


Dee L, July 22, 2003 - Hi Jon, I received a new heart on July 5, 2003 and I feel like a million dollars. Five days after surgery I was on the treadmill for 15 minutes. I am absolutely the luckiest person alive. I had a wonderful team of doctors at New York Presbyterian at Columbia and I did really well. I went in on the 5th and was discharged on the 17th!
     However, the main reason I am letting you know is that you were so much part of this journey. Through everything I learned on your web site I had the intelligence to know what was going on and what to expect. I thank God for you every night. It is wonderful to have shared feelings going through CHF. For the past 5 years I have checked the web site almost daily and searched something I wanted to understand better. My support team was always asking me to bring printouts and I passed around your Manual. I always gave you credit for everything. You have done something that God wanted you to accomplish, and I pray you and everyone on the web site to have faith and there will be an answer to prayers. You were part of my answer and for this I will be ever grateful. deedurham@webtv.net
 
Jon's note: Giving credit where credit is due, thank God for His work, not mine.


Caroline, July 22, 2003 - Hi Jon, My husband has an experimental pacemaker/ICD device, an EF of 15%, was diagnosed with CHF about 6 months ago, and also has adult onset Myotonic Muscular Dystrophy - a huge plate full! He is very weak now, is SOB, and we are very strict with sodium and liquid intake. What can I expect in the future?
     Is the MMD diagnosis one that makes a heart transplant impossible? I am now fighting for everything I can for him, and have quite a struggle making his family understand that another opinion now doesn't have much value for us. They are not accepting that CHF can kill him, MMD can kill him, and we are doing everything we can! They seem to think another doctor or another clinic will give a better outcome.
     Rick takes Coumadin (5 mg), Betapace AF (120 mg) twice daily, Cozaar (25 mg) twice daily, Lipitor (40 mg) at bedtime, Lasix (40 mg) twice daily, and Klor-Con (20 mEq) twice daily. He also sleeps with a bi-pap and has the worst case of sleep apnea our pulmonologist has ever seen. He is seeing an electrophysiologist with access to other cardiologists, and they don't offer us much hope.
     Rick has been on SSD for nearly a year and has gotten much worse in the last month. What can I look forward to? How does one handle a family in denial? Caroline.Best.b@bayer.com


Thomas' July 22 reply to Valerie R's July 21, 2003 - Hi Valerie, Thanks for your response. How much activity were you doing in your classroom every day? I will be doing resource special education reading with elementary 3rd through 5th grade kids who come to me. Case load will be 20 students. I used to teach special education grades 6th through 8th grade math and science for 6 periods. They also came to my room. Thomas. thomascox66@hotmail.com


Cat, July 22, 2003 - Hi, Has anyone tried the new statin drug called Zetia? I couldn't tolerate the other statins like lipitor and pravachol, so my doctor put me on this one because it supposedly had less side effects. I've been on it for about a month and am now experiencing severe back pain. Has anyone else had this reaction? Cat. lafsalot2000@yahoo.com


Hal, July 23, 2003 - Hey everyone, I hope all you fine folks are feeling fine or at least okay. My question to all of you is, "How do I stockpile meds?" One county in the state of California is springing for my heart meds at present. It was 2-1/2 years before I found a doc that would prescibe for 90 days and not 30. Even then my last batch of 4 meds had 4 different counts of 30, 60, 90 and 120 days!
     Let's say I've saved up a bunch of disability checks and I'm heading out of the country for Mexico and central America for a year. What's the trick to scoring larger quantities of meds? I'm more than happy to pay for them. I've been hearing about Canadian Internet sales. How does that work? Wishing you well. uncahal@webtv.net


Lee, July 23, 2003 - Hi, I need help. I have had a persistent cough since February of this year. At night I cough once or twice after I have been lying down for about 2 hours and after serveral hours again for the rest of the night. This happens 5 out of 7 nights. I have had insominia for a very long time. It takes me an hour to fall asleep and I awaken numerous times throughout the night.
     Several years ago my family doctor at the time suggested that I may have fibromyalgia. A few months ago my hands swelled in the morning to the point that I could not close them. This lasted for about a week and went away. I went to my doctor and he didn't seem to think it was anything to worry about.
     Occasionally I get this flutter in my chest that makes me cough. I also get a pain in my chest that feels like someone has tied a knot in the center of it. I have also recently been suffering from muscle pain which is quite severe at times and is worse in the mornings.
     After looking at this site I thought that if any of you could help or give suggestions that would be greatly appreciated. I am at a loss. My doctor just seems to blow me off. Can anyone help? Gratefully, Lee. Coralnp@hotmail.com


Donna's July 23 reply to Cat's July 22, 2003 - Hi Cat, I was just put on Zetia today! I could not tolerate statins either and my doctor said there were no side effects from this drug. I am sorry to hear you are experiencing back pain. I already have a bad back and suffer often from back pain. Hopefully this will not aggravate it anymore. Check with your doctor because I was told there are no side effects from this drug. God bless you and I pray this goes away for you. I will let you know if anything happens while I am on this. Later. gramme@cfl.rr.com


Hal, July 23, 2003 - Hey Gang, The glow of a new heart doc is starting to fade. Would somebody please tell me why this guy laughs at the notion that Coreg causes weight gain? Twice I was told to eat less. I see this guy tomorrow, 15 lbs heavier than a month ago. I think it's common knowledge. Eat less? Man, I'm getting real tired of these people, MediCal or no MediCal. What do you think? What is he thinking? I'm not looking foward to 300 lbs. uncahal@webtv.net


Joseph P, July 23, 2003 - Hi Jon, Will you point me in the direction of what veggies that you cannot eat or eat in moderation when you take Coumaden. Thanks, Joe. joeandol@shawneelink.net


Jon's July 23 reply to Joseph P's July 23, 2003 - Hi Joe, It is my understanding that there is no such thing as vegetables not to eat while taking Coumadin. Any foods high in vitamin K should be eaten in consistent amounts every day or week, is all. I don't have an actual list of foods high in vitamin K but I am sure someone here does. Jon.


Shannon's July 23 reply to Jim's July 9, 2003 - Hi, I go to Dr. Mary Walsh with the Care Group in Indianapolis. I switched from another cardiologist in the group because they had moved offices and randomly choose Dr. Walsh. God was with me because I found out at my first visit that she is a cardiomyopathy specialist. gemnash@joink.com


Valerie R's July 23 reply to Thomas' July 22, 2003 - Hi Thomas, How much activity? Well, I had a 28 minute homer oom and then 5 classes of 52 minutes, of 8th grade English. It's regarded as inner-city, Title One as schools go, and since my classes numbered 38 to 40 of very mixed children, I was always up front and around teaching. I did fire drills, etc,..., but I did have an elevator key which I used to go up when carrying things. I really love 8th graders and will miss them. I went to Retirement yesterday to retire, but I was talked into DROP and a one year leave instead. Maybe I will go back next year. You never know! Valerie R. vgrogers@aol.com


Susan G's July 23 reply to Joseph P's July 22, 2003 - Hi, It's my understanding that on Coumadin you should eat a consistent amount of green leafy vegetables, including lettuce in salads. These interfere with Coumadin, but your dosage is adjusted accordingly. Sue. suekgpc@hotmail.com


Valerie R's July 23 reply to Joseph P's July 22, 2003 - Hi Joseph, I've been on Coumadin for 8 years, although I have recently had a problem with my INR due to new meds and diet change. Jon's right: One is supposed to be consistent, although that is for me easier said than done.
     Vitamin K is an "antidote" to Coumadin, I have been told. Watch your green or leafy veggies like broccoli, brussel sprouts, cauliflower, chick peas, kale, spinach, and turnip greens - they are all high. Avoid green tea, at 1,709 micrograms per 8 oz! Beef liver and pork liver are both high at 118 and 99 for 4 oz, respectively. I have read to avoid garlic and large amounts of fried or boiled onions like in French onion soup. I finally found out that these raise INR. I went up to 4.6 on a low-sodium shrimp scampi dish and had to cancel a dentist appointment. You can research under "Coumadin" or write me. Valerie. vgrogers@aol.com


Brenda H, July 23, 2003 - Hi, Can anyone recommend an accurate weight scales that is reasonably priced? I'm having trouble with fluid buildup and my scales just aren't working right. Many thanks, Brenda. waterwoman11@yahoo.com


Lane C, July 23, 2003 - Hi, I have recently been honored with induction to the club. I have CHF, IDCM, and have had to quit working. It's been really tough, as I am sure many of you have experienced.
     My question has to do with support groups in the Dallas, Texas area. I want to stop taking my frustration out on my wife, whom I cannot thank enough about her support and care in this time for us. We're really in a bind and I can't deal well with the fact I'm not bringing home a check. Does anyone have names or numbers for area groups?
     My day is free, outside of doctor appointments and Rehab 3 times a week. Danna's a teacher and goes back to work soon and I've got to do something with all this time. fastlanedelivery@flash.net


Cristina L's July 23 reply to Tracey's July 21, 2003 - Hi, In response to your e-mail, I e-mailed Frog Ranch. I have been buying Frog Ranch for quite some time and actually introduced them to Pete at Healthy Heart Market. I asked about the sodium and this was his response:
     "The sodium level has increased to help stabilize the product, we are working to get it down and I can personally guarantee that we will succeed, it will just take a while, the biggest problem was in the brining process of the peppers and the desalination process that came afterward. We are still a low sodium product so please keep buying it." clisa@optonline.net


Gene O's July 23 reply to Joseph P's July 21, 2003 - Hi Joseph, In regard to a list of foods' vitamin K content, the Department of Agriculture has a number of databases of the nutritional content of foods, one of which is vitamin K. Their web site, the last time I checked, was www.nal.usda.gov/. Good luck. eloliver_y@yahoo.com


Cat, July 24, 2003 - Hi, Like all of you, I routinely get blood tests done every 2 to 3 months. My results have always been within the normal range until recently. It seems I have developed hypercalcemia (over 12) with an elevated BUN (31) and slightly elevated blood sugar and cholesterol. Just prior to this, my Lasix had been increased because of several exacerbations of CHF.
     Because of the calcium problem, my doctor now has me drinking 3 to 4 liters of fluid a day for dilution, and has switched me to Demadex. My CHF symptoms have improved dramatically, so I am wondering if the recent abnormal lab values could have been the result of the increased lasix or CHF itself? I would appreciate any input, since my PCP still wants me worked up by an endocrinologist. lafsalot2000@yahoo.com
 
Jon's note: If you take digoxin, how is your dig level? The stronger loop diuretic (Demadex) reduces reabsorption of calcium via the kidneys. I think I would get the workup - better safe than sorry.


Sheryl C's July 24 reply to Lane C's July 23, 2003 - Hi Lane, Finding something to do with all the hours is a real problem. I suggest you get some hobbies fast. Take some adult classes at the local Vocational Technical school. I learned how to make web sites there, but they have all kinds of classes. Next spring, put in a veggie and herb garden. Find volunteers for the heavy work, but start designing it and learn about gardening now.
     I am also working on training my dog to be my partner in therapy work. If you don't have a dog, get one! Whatever you do, do not just sit around being mad about joining this club.
     Usually big hospitals have support groups. You can also start one of your own at your church. It is very hard to go from an active life to a limited one so you have to find new ways to experience life. Make them meaningful and fun. You sound like a perfect candidate for relaxation breathing exercises. Research it on the web. Oh yeah, learn to cook. Sheryl C. cvprehab@hotmail.com


Monica, July 24, 2003 - Hi, I have some questions maybe someone can answer for me. My EF is been 30% and everything points to CHF. I had a massive heart attack in 1999 and had a CABG done. I have been doing okay with problems here and there. I have been told I will be put on a heart transplant list but haven't yet.
     Lately I feel weird. I have a dry cough and feel thirsty all the time. I also have to pee a lot. I take 20mg Lasix every day but I have no swelling or anything like that. I know I have to call my cardiologist and tell her about it but I'm just afraid to do so.
     I also have a fading-out when I drive - it's like I just go into a blank stare. My hubby is now worried about me driving. It doesn't happen all the time but enough to scare us both. My 15 year old daughter just got her permit so I let her drive a lot but would just like some intake on this. Thanks and God bless, Monica. monicawhalen@hotmail.com


Gene O, July 24, 2003 - Hi, This is an update to my previous post (July 23). This morning I tried to retrace my path to the USDA database and found that it is not an easy task. A more complete reference should be used, such as www.nal.usda.gov/fnic/etext/000020.html. Another, unofficial but perhaps more useful listing can be found at: www.coumadin.com/ under the Health/Lifestyle link. I hope this helps someone. Gene O. eloliver_y@yahoo.com


Katherine H's July 24 reply to Monica's July 24, 2003 - Hi Monica, You need to contact your doctor right away. I am not medically trained but I would be concerned that your symptoms indicate diabetes - thirsty all the time and having to pee. kholian@msn.com


Valerie R's July 24 reply to Monica's July 24, 2003 - Hi Monica, I understand how you don't want to "bother" your cardiologist - I used to be that way. Trust me, go bother her or find one you are not shy about talking to. vgrogers@aol.com


Cat's July 25 reply to Monica's July 24, 2003 - Hi Monica, I had the exact same symptoms you described, and I was found to be hypercalcemic. It might be a good idea to get some blood work done. Take care and feel better soon. lafsalot2000@yahoo.com


Margaret D's July 25 reply to Lee's July 23, 2003 - Hi Lee, It's interesting you should post about sleeping. I saw a pulmonologist today who thinks my problem with very frequent awakening and coughing in the night - causing severe wheezing and inhaler use - is due to severe reflux. I have had it for years but with no symptoms. I took generic Zantac for years but have been put on Nexium for the past 2 weeks and really see a difference. This guy doubled the dose, recommended a wedge to sleep with and is going to redo my sleep study (where I didn't sleep!) after my reflux is under control.
     Your chest pain also sounds like it could point to reflux, although he said 80% of people with reflux have no symptoms. I was very impressed with this guy and I have high standards. He also thinks my pulmonary hypertension is related to reflux and not to the cardiomyopathy. He thinks I had the PH first. I am so excited about the possibility of sleeping through the night that I can hardly stand it! Good luck. mdavis10@tampabay.rr.com


Sharon, July 25, 2003 - Hi everyone, I'm 45 years old and right now am a civil servant, going back to school to do my Master of Arts in September. I was diagnosed with IDCM in 2002 and was hospitalized in early January with microcytic anaemia. I started Coreg and digoxin (Lanoxin). I had a cath in March with good results and moved through the Canadian health system with good speed.
     Things are fine as long as I stay away from caffeine, MSG and too much other sodium. The heat here in western Canada is bothering me a bit lately. I also have a CPAP machine, because although I don't have sleep apnea, I have some kind of sleep disturbance. I attend cardiac rehab 3 times a week, and have a date with the treadmill on August 14th.
     I have certainly become a label reader. Canada insists that ingredients be printed on labels now, so it makes things much easier. I wish there were more foods that are low sodium. Recently one store I shop at took their low sodium tuna off the shelf because there aren't enough of us to make them a profit, I guess. We have low sodium Cracker Barrel cheese up here, with not a whole bunch of potassium added. Jon, I like your recipes and have tried some. Cheers everyone. lyons@sasktel.net


Joanne's July 25 reply to Monica's July 24, 2003 - Hi Monica, You really can't afford to drive, it's way too dangerous. Just think about that driver in San Diego a few days ago, something like that could happen to you. Also, please do check out the possibility of diabetes. If you do have it, the sooner you know, the sooner you can treat it. If you don't have it, we can all be glad with you! Be well and God bless, Joanne. muddyrds@hotmail.com


Monica, July 25, 2003 - Hi, I just had complete blood work done last month and they said everything is normal. Now that I think about it, I need to call and ask for printout of all the work. Usually, I keep copies of all my medical records so I will do that today and while I'm on phone with them I will let them know.
     It's not that I dont want to bother her, she is an awsome cardiologist and I really like her. She does not sugarcoat anything, which is what I like. It's just that I am afraid they won't let me drive and that can't happen. I have 2 teenagers that lead very busy lives. I know better than to put off when something doesn't seem right and I know all the warning signs. Thanks to all, and I will let ya know what happens. God bless, Monica. monicawhalen@hotmail.com


Jon's July 25 reply to Monica's July 25, 2003 - Hi Monica, To be blunt, are your teenagers' activities more important than other people's actual lives? What if you killed someone - maybe someone else's children? Think about what you are saying and doing. I've got a wife and child on the road twice a day - don't be my worst nightmare! Jon.


Sheryl C's July 25 reply to Monica's July 25, 2003 - Hi, The dry mouth and frequent urination could be due to your Lasix. If you are on an ACE inhibitor, that could be causing your dry cough. Contact your doctor about the "fading out" now. Stop driving until you stop fading. How would you feel if you killed someone during a fade?
     If the cough is making you lose sleep, find the reason for it. Loss of sleep is very detrimental to our well being and that alone can cause "fuzzy brain" symptoms. Sheryl C. cvprehab@hotmail.com


Lynn D, July 25, 2003 - Hi, I have an alert for everyone. I have low tension glaucoma, which is the same as normal tension glaucoma. It is a result of years of CHF and low blood pressure. Please go to google.com and type in "low tension glaucoma" to read all about it. I've lost a bit of sight that cannot be recovered. Fortunately, I have access to some of the top eye docs in the world. Tell your cardiologists and eye doctors to give you a field of vision test, and keep a watch on the optic nerve. lgd1@bellsouth.net


Greta's July 25 reply to Hal's July 23, 2003 - Hi Hal, Both my mother and father-in-law get some of their meds from canadadrug.com (at least I think that is the web address) with great success and less expense. However, unless you are going to Mexico or central America for a year, why would you want to stockpile your meds?
     On the issue of Coreg and weight gain, I have been taking Coreg since my CHF diagnosis in March of 2003 without that side effect. I have gained weight, but only because every time my elbow bends, my mouth flies open. I am not saying the Coreg could not be causing weight gain in your case because medication affects everyone differently. My suggestion is that you check with your pharmacist. Here is a question for the teachers out there: Is it effect or affect? I don't know which one to use in which case. gjohnson@arkansas.net


Monica's July 25 reply to Jon's July 25, 2003 - Hi, I take my life, my childrens' life and the life of others very seriously. As I stated, I let my daughter do a lot of driving, especially lately that I haven't felt good. I would never want to get behind the wheel and kill anyone. I am just saying that it will stink if I am no longer allowed to drive, not just because my kids have very busy lives but because that is the only independance I have left. I am aware of everything and that's why I let my daughetr drive. monicawhalen@hotmail.com
 
Jon's note: I was just responding to what you said earlier: "I am afraid they won't let me drive and that can't happen." I am glad you are playing it safe.


Joanne R's July 27 reply to Sharon's July 25, 2003 - Hi Sharon, Jon has links to some very valuable sites for low sodium cooking and products in addition to his recipes. I am really sold on www.lowsodiumcooking.com because the web master has our sodium restrictions plus he has a family and wants to cook one meal for everybody. Obviously the recipes need to taste like "normal" food and they do! Check it out. Be well and God bless, Joanne. muddyrds@hotmail.com


Joe S, July 27, 2003 - Hi, Two months ago I fell asleep at the wheel and almost killed everyone "nearby." Fortunately God still takes care of fools and there was no one around on a famous US highway. The only thing that happened is a tree broke our windshield. By the way, a tow truck operator said they would take away my license if they knew I had fallen asleep at the wheel, so no more driving while sleepy.
     Regarding my talk of humidity, I don't think I ever knew what real humidity was or how it affected me till I drove to a little town called Yerington, Nevada. The temperature was 107 with humidity over 80% and the air was orange because of nearby fires. When I see this I begin to understand more why people move to southern California with its climate. I lived there for 60 years and only felt one major earthquake. Joe S. jes@gbis.com


John Len's July 29 reply to Joe S' July 27, 2003 - Hi Joe, I lived in California for a year and a half back in the 1950s and the earthquake I felt nearly dropped a DC-6 (four-engine aircraft) at United Airlines on my head -a long story. I have been back in Virginia ever since. ;-) a_lenny7@hotmail.com


Dave K's July 29 reply to Joe S' July 27, 2003 - Hi Joe, Did hitting that tree give you any ideas or insight? Dave. dkreifeldt@yahoo.com


Zona, July 29, 2003 - Hi, I am a CHF patient, a layperson, seeking info and experiences of others about EECP. That is a non-invasive procedure that appears to improve some patients. There are clinical trials underway. Equipment is used that inflates and deflates air-driven compression cuffs that are wrapped around your legs. The pumping cycle of the cuffs is determined by the heart beat. zorch.01@juno.com


Amy W, July 29, 2003 - Hi all, I have a question. I'm a 41 year old female with ventricular tachycardia, heart failure and pulmonary hypertension. For the past 2 weeks I've been having a strange feeling in my chest, on the left side of my chest.
     At first I was describing it as a balloon being filled, but I think the better way to describe it is a sqeezing. It feels as though there is something in there sqeezing something, then letting go. It only lasts for a few seconds. It happens a few times a day, sometimes more often.
     I'm not sure if it could be gas related because since I had my gastric bypass surgery back in November, there has been lots of gas. Also, since my surgery I have no heart burn or gastric reflux, so I'm confused as what it could be. I was just wondering if anyone had any suggestions. Thanks, Amy. smeltzy38@yahoo.com


Jimmie B, July 29, 2003 - Hi, I am happy to find this site. I have been messing with CHF since 1996. I had a CABG that year and a mitral valve installation in 2001. Up till now I have been ignoring the MD's advice about sodium. I have tried to conquer the lust, but up until this week I have failed. I started attending Overeaters Anonymous and have had 3 days of "sobriety."
     We have no cardiologists in our little town and certainly no CHF specialists, so it is the primary care physician that tends to me. Jon's comments about getting a CHF specialist make me a little uneasy. We live on an island and must get to the mainland by air or boat. We do have daily commercial service to Seattle, Washington.
     Anybody with stories on their sodium conqests, please let me know. JButler@hrblock.com


Joyce, July 30, 2003 - Hi, My husband has CHF, a-fib, and diabetes. Lately he has been complaining about the heat. He is cold and clammy most of the time. We are running the air conditioner and fans but he is still clammy. Is this something we should be concerned about? I have been concerned but he is stubborn and will not go to the doctor or ER. Maybe I am just overly concerned about this. We have had much warmer weather this summer and it did not seem to bother him as much. jas48@webtv.net


Nancy S, July 30, 2003 - Hi, I had a CMX stress test done in November and the doctor said that I'm doing really well and that I could pretty much do what I felt like doing. He didn't say anything about coming back for a checkup and a lot of times they mail my appointments to me so I kept waiting. I never got one, so after about 5 months I decided I'd better check and see if I needed to go back. I called and the nurse said she wasn't in the clinic and would have to call me the next day after she pulled my file. She never called.
     A couple of weeks later I had an appointment with the rheumatologist at the same hospital so I went by there. They said the doctor and his nurse weren't in the clinic that day and they'd have her to call me the next day. She never called.
     Yesterday I called to have my prescriptions refilled and thought I'd ask the person who answered the phone if I needed to come back. She said that my record said I was supposed to come back after the stress test in November. I'm not feeling very comfortable about my health care team right now and the doctor is a CHF specialist and I really did like him. I wonder if I should find someone else or accept this as a miscommunication and give it another chance. Thanks for listening. Nancy. ns1@alltel.net


Greta's July 30 reply to Amy's July 29, 2003 - Hi Amy, To be on the safe side, I suggest that you quit trying to rationalize what the feelings in the left side of your chest might be, and get to your doctor as soon as possible. It may be nothing, but let your physician determine that. All heart patients should never let a feeling in their chest go without checking it out with their doctor. Some of us are so in tune with our bodies that the slightest differentiation in feelings or symptoms could be important. Hang in there and keep a good attitude. Greta. gjohnson@arkansas.net


Greta's July 30 reply to Jimmie B's July 29, 2003 - Hi Jimmie, It just doesn't taste the same without that salt, does it? I understand what you are going through. My CHF was diagnosed in March of this year and the doc said I had to keep my sodium below 2,500mg daily. I love V8 juice and the low-sodium version is okay (I'm learning to like it better) but is just not the same as the regular. There is no easy way to learn to eat foods without salt - it is something that comes with time. The longer you eat foods without salt, the easier it gets.
     Try all the salt-free condiments you can find and get a good low-sodium cookbook. There is one called quot;The No-Salt, Lowest Sodium Cookbook" that I found on a low-sodium web site and ordered from Amazon.com. The author is Donald Gazzaniga, who is also a heart patient. Try it, you'll like it. The BBQ sauce is wonderful. Hang in there and don't give up. Greta. gjohnson@arkansas.net
 
Jon's note: The recommended daily sodium intake for a healthy person is only 2400mg. You should be getting 2000mg daily maximum!


Sharon's July 30 reply to Nancy S' July 30, 2003 - Hi, If someone doesn't call me back, I get on the phone and get hold of them. Don't wait beyond a week. I'm always surprised that people are passive about their health, especially folks who pay for health care out of pocket; we Canadians pay through higher taxes and feel like we get it free. If you are paying for a service, ensure you get good service.
     If you are a heart patient or have any kind of chronic condition where you are under doctors' care, insist on good communication. My family physician calls me herself if there is something unusual going on, and her nurse and I are on a first name basis; same with my cardiologist and OB/GYN and their nurses. Like I said, you have to insist on good communication and sometimes you have to make things happen. Doctors offices are busy and can get disorganized. Take care. lyons@sasktel.net


Valerie R's July 30 reply to Jimmie B's July 30, 2003 - Hi, I like the word "lust" and fully understand it. I spent 7 years not paying attention to my sodium that much, eating out, etc. This year, I got sick and went into a hospital 3 times, twice by ambulance. I feel good again, but my EF dropped to a low I don't even want to reveal!
     As Jon is always telling us (I hadn't found this site back then, but no excuses), we are pushing our heart by eating lots of sodium. The second time I went by ambulance, I had not gained any weight but could not breathe and had severe pulmonary edema. The third time I also went by ambulance, and I couldn't breathe then either.
     Now, I just remember those experiences. Also, when I keep my sodium low (I feel best at 1,000mg per day) I also feel like I have some control over an illness that takes much away.
     I went to a large bookstore and online and bought 2 books. One tells me the sodium content of foods (I also got a list online) and gives recipes, and the other is The American Heart Association Low-Salt Cookbook - this is a book I use a great deal, and I also get many good recipes online. I've had to learn how to cook! Many dishes like Mexican Scampi, turkey, catfish, and Jon's sauced pork chops, my husband likes too. E-mail me if you wish. I think living on an island would be very interesting! I live in Miami. Remember, when you cheat, you only cheat yourself. vgrogers@aol.com


Kathy's July 30 reply to Jimmie B's July 30, 2003 - Hi Jimmie, I was diagnosed exactly a year ago and I thought I wasn't a big salt eater. Ha! The hardest thing for me to do is control my sodium. I gave up ramen noodles and most of my cheese habit. I haven't had a single sip of canned soup in a year. I became a near hysterical reader of labels.
     I love V8 so I learned how to make my own, using canned no salt added stewed tomatoes and other veggie juices. I use no convenience foods, nothing boxed or premade. When I just can't stand it any longer I slice up 2 hot dogs and run them through 3 changes of boiling water. Each hot dog has 420 mg of sodium, but some of the salt is removed by the boiling water. I mixed the pieces with canned stewed tomatoes and fresh zuchini and add exactly one ounce of cheese and thats my pizza fix for the month.
     I fought against the sodium restrictions but when I noticed I couldn't breathe one night after just 2 small slices of pizza, I decided sodium wasn't worth it. Oh, those "healthy" frozen convenience foods? They are lower fat, not low sodium. Read a label and weep. kathyh@linkny.com


Jimmie B, July 30, 2003 - Hi, Thanks to all of you that replied to my post yesterday. Perhaps I was a bit disengenuous. I am widely read on this low sodium topic. I have now had at least 5 different recommended portions of sodium, anywhere from 1000mg to 2500mg daily. I have set my abstinence goal as 2400mg and my target as 1800mg. For 4 days I have stayed under 2400mg, but I am feeling a high level of frustration. I want to go to the salt shaker. In the olden days I would bring home a 50 pound bag of rock salt and eat it right from the bag.
     I have always eaten salt, with or without food. Someone recommended eating lemon or lime to compensate. Well, being a "Yes, but" person, I tell you that my biggest nemesis now is lemon and lime, for I had the habit of dipping lemon or lime slices into salt. I suspect that lemon and lime are now among my triggers for salt consumption.
     Actually just writing about this makes my mouth water, literally! By the way I have tried a variety of products to replace salt, Mrs. Dash among them and found them to be particularly innocuous. So if there are any other hard core salt addicts out there let me know your solution, I am still seeking mine. JButler@hrblock.com
 
Jon's note: Habaneros, better when cross-pollinated with cayennes for superior flavor while retaining ferocious heat. I used to eat salt also.


Jon, July 30, 2003 - Hi everyone, I added a low-carb, low-sodium dessert recipe tonight. Second, there will be a new resource available in Question And Answer format for CHFers with a heart failure (CRT) pacemaker soon. I will list the questions already being answered first:

  1. How are patients selected for CRT - which CHFers are most likely to benefit?
  2. What are the different pacemaker settings and their meanings?
  3. Why do some people get worse after CRT implant and then improve after CRT is turned off?
  4. Why do some people have a great deal of difficulty with the third lead?

I am sure there are other specific questions you all would like answered about these CRT pacemakers. I am gathering potential questions so please send any questions you might have. You can either post them here or e-mail them to me at www.chfpatients.com/contact.htm. Jon.


Mel G's July 30 reply to Zona's July 29, 2003 - Hi Zona, I've had IDCM and CHF for 18 months. I also have an ICD/pacemaker. Six months ago I had to have my gallbladder (of all things!) taken out, and my cardiologist arranged for a lineup of specialists to watch over me during the surgery. When I woke up I was in a CCU high dependency bed, with a 24-hour cardiac nurse sitting beside me and these huge, white trousers wrapped around my legs. I spent the first 12 to 18 hours after surgery with those on, at the request of the anesthetist.
     I was a little surprised, but was soon reassured that everything was boring it was so normal, and there was nothing to worry about. The Enhanced External Counter-Pulsation stockings were pumping away, up and down, up and down. I thought they felt great. The nurse said that sometimes they really bother people, who can't wait to get them off. The sound of them pumping up and releasing (a bit like a blood pressure cuff) was a little annoying, but I felt very relaxed and non-stressed while they were on.
     The nurse mentioned that they have been in use here (Australia) in coronary care recovery for 3 or 4 years now. No one has ever suggested I need them or should get them for any reason since. As soon as I was 24 hours post-op, they took me out of CCU and put me in a regular high dependency surgical bed for the rest of my recovery. If asked to do so, I would have a session with EECP any time. :-) falmouth@bigpond.com


Valerie R's July 30 reply to Kathy's July 30, 2003 - Hi, I notice more and more foods being made low in sodium. I've found 3 different potato chips and today in a deli I saw hot dogs at 233mg each. Campbell's even makes a chicken noodle soup at 140mg and tomato soup at 50mg. They are single serving cans, and the only one that tastes good to me is the chicken noodle. However, I do use the mushroom and tomato soups for crockpot cooking.
     I find it takes me longer and longer to shop, because I start reading labels at the store. Whenever I find something deliberately made with no or very low sodium, I write the company and thank them! If the label is not clear, like a low sodium taco mix, I write and ask about it. It seems to me that companies need to know there is a demand. Valerie. vgrogers@aol.com
 
Jon's note: Also get to know the store manager that does the ordering. He knows me very well at my local store.  <g>


Bob, July 30, 2003 - Hi, My name is Bob. I am a class 3 heart failure patient. I am stable now, but I retain fluid in my stomach. This causes me to have the dry heaves. When my fluid retention is up, I heave off and on most of the day. My doctor can't seem to help me. Does this happen to anyone else? baysmom1959@aol.com
 
Jon's note: It does not happen to me but this can be caused (rarely) by ACE inhibitors causing an angioedema-like reaction in the gut - something to consider.


Joanne R's July 30 reply to Jimmie B's July 30, 2003 - Hi, You are the first person, other than me, who I have heard admit to eating rock salt! As a kid I always had some in my pocket for munching. Low sodium is my biggest complaint about CHF, and you will find my recommended solutions in my July 27 post to Sharon's post of July 25.
     Beyond that info, I really agree with Jon's suggestion about using peppers. I have become the Cayenne Kid and nobody within a half block radius doubts that I use a lot of garlic. Maybe we can start a 12 step program - Salt-aholics Unanimous! Courage! Be well and God bless, Joanne. muddyrds@hotmail.com


Valerie R's July 31 reply to Jon's July 30, 2003 - Hi, I am so excited about answers about CRT pacing! I had a Metronic Insync put in December of 2002. Five weeks later, my cardiologist turned it off. I was so SOB and could not walk across room, but as soon as it was off I felt great; then the surgeon turned it on, I got sick, and the cardiologist turned it off.
     My cardiologist said I needed an ICD but is not sure why the pacer was put in since my QRS was only 100 - it's now 115. I have also developed sporadic a-fib and wonder if this thing did me any harm. I have been unable to get answers. My cardiologist does not know, and the surgeon is sold on it. Lately I've been hearing about others with similar problems.
     I'm going to a transplant evaluation. I was hoping they could give me answers but no luck so far. I've only had consultation so far and go soon for a stress test. The doctor there said maybe it could be set during electrocardiogram, but he didn't explain and didn't seem sure. Valerie. vgrogers@aol.com
 
Jon's note: Don't get excited until we see how useful the page turns out to be.


Ruthie A, July 31, 2003 - Hi everyone! Is there anyone else in here that is allergic to sulfa? Are you taking Edecrin (ethacrynic acid) for your diuretic? How are you getting your medication? If you can't find any Edecrin, what are you taking for a substitute diuretic?
     I am asking because I have called and scoured just about every pharmacy in the midwestern USA, as well as several national pharmacy chains looking for Edecrin. Alas, it is truly no longer available. The company who manufactures it claims it will be available for sale again by the end of September, but that doesn't help me right now! My doctor and clinical pharmacist are working on the problem, but I was just curious to see if any of you had found a solution. Ruthie A. rlaba51@yahoo.com


Kathy, July 31, 2003 - Hi, Yet more on the salt issue. Wegman's markets in the Rochester/Buffalo region have no-sodium Muenster cheese and no-salt-added roast beef in their deli, and very-low-sodium bread at 5 mg per slice. They also have a large brochure covering all their deli items giving full nutritional counts. I know my store manager well, too. I've found I'm eating better than I have in years, much more fruits and veggies. I recently went on a tomato binge, eating grape tomatoes like gumdrops. I have looked at the lower sodium chips and figured they just aren't worth it, 12 chips per serving? What's the point? kathyh@linkny.com
 
Jon's note: No Salt Added nacho chips with homemade salsa do it for me.


Jacky, July 31, 2003 - Hi, I am very upset with this new privacy law! I have always had in my file copies of all my test results. Yesterday when I requested copies of the echo and blood test results, I was told I could have them sent free to another physician but would have to pay $35 for myself! Four pages! Just venting, Jacky. Jackymwb@earthlink.net
 
Jon's note: Call your state's Attorney General's office. There is a legal limit on how much you can be charged per page for medical records in my state and the price you quote is illegally high here, last time I looked. If your doctor claims that HIPPA is the reason for such increased cost, he is full of it - in my opinion. However, he can insist you sign a request form for any medical records now.


Lane, July 31, 2003 - Hi, If you haven't found this list yet, it's amazing! I use my wife's Palm Weight Watchers program to track my salt daily. I also have the USDA Nutritional Information Database (which is downloadable for Palm Or personal computer) to check sodium content on almost anything. The Palm version is at www.nal.usda.gov/fnic/foodcomp/srch/search.htm and the USDA food and nutrition page is at http://www.nal.usda.gov/fnic/foodcomp/index.html. I hope it will help others who have to watch salt. Just like you, I'm not likimg the different taste, but it's better than the alternative, huh?
     The nice thing about the USDA program (information on 6661 items), is that it's suitable for using on your computer or PALM and you can modify the quantities for recipies you are using and not have to calculate equivalent amounts. fastlanedelivery@flash.net


Lane's July 31 reply to Nancy S' July 30, 2003 - Hi, I have had to keep up with the doctor's office schedules on occasion too. I have a great medical team, but I have to remember they have a hectic schedule many days. I recently had to track down my chart between my cardiologist, transplant office, and cardiovascular unit where I'm titrating Coreg upward to 25mg. I needed copies of medical reports and nobody had my file. I went to the cardiologist's office the next time I was in the building and discussed with the nursing staff and they are researching the whereabouts.
     Be proactive with your medical team and know what you take and why. I learned the hard way on this last item - a doctor didn't specify parameters of heart rate and nurses were trying to give me beta-blocker while I had a slow heart rate. fastlanedelivery@flash.net


Valerie R's July 31 reply to Kathy's July 31, 2003 - Hi Kathy, Don't look at low-sodium potato chips. Look for those that say "No Salt Added." I have found Wise's Aunt Lisa's the best, Cape Code, and most recently Charles Chips. These all, according to label, have 0mg sodium per serving. If someone has a recipe for spinach or onion dip, I will be a very happy camper! Valerie. vgrogers@aol.com


James, July 31, 2003 - Hi, I am a 34 year old male with left branch bundle block and now CHF. I also have aortic valve insufficiency, but this is very mild. I was diagnosed with CHF a little over a year ago. The doc put me on furosemide (Lasix), Cozaar, and Coreg. Ten months later, my EF dropped to 20 to 25% and my heart enlarged to 6cm from 5.1cm.
     I then began treatment for mild obstructive sleep apnea. A couple of months later there was improvement, but my heart had enlarged to about 6.5cm.
     My cardiologist has decided we need to move forward with a biventricular (CRT) pacer. Since the sleep doctor insists on 6 months for signs of improvement, we gave it an additional 4 months. I go back in a couple of weeks to see if the sleep treatment yields any further effects. Assuming the echo shows no improvements, September is the go forward point for a biventricular pacemaker.
     I'm curious if others are having similar experiences. To say the least, I feel my options narrowing rapidly and at age 34 this is not a good feeling. James. jnj@spamcop.net


Kate's July 31 reply to Jon's July 30, 2003 - Hi, As mentioned earlier, my experience with my biventricular pacemaker has been a bad one, but I am making progress on learning what happened. The Medtronic version of the ICD is AV-optimized to the proper setting by hooking the patient up to an echo and the pacemaker module. Various pacemaker settings are tried while viewing the heart's response via the echo. This continues until the optimum setting is found.
     My new Guidant version is optimized quite differently. The Guidant tech hooks you up to the pacemaker module and data is transmitted to Guidant, where the input is measured against a statistical database and the pacemaker setting established.
     In my case, the computer decided my setting should be 60. I got very, very sick. When I was re-optimized using the Medtronic echo method, my optimum setting was found to be 140. The next generation of ICD may well be self-optimizing and that is scary for those few of us who have experienced what happens when the computer and the heart don't agree!
     No one seems to know why the computer picked a setting that did not work for me and I seem to be the exception in a large study group. I don't imagine I will ever know the why of it, but right now my aim is to get better; the more I learn, the better my chances of that happening. Kate. tothymecottage@frontiernet.net


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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