Jon P's 4-16 reply to Jack's 4-12 that's a good web site for food contents
Tony's 4-16 reply to Joe's 4-14 allergies and interactions
Rick M's 4-16 reply to Tony's 4-13 CHF, television, fruits, and lubricants
Charles K's 4-16 reply to Jon's 4-14 chest pains
Jon's 4-16 reply to Charles K's 4-16 chest pains
Ernest D's 4-16 reply to Heather's 4-10 transplant listing
Autumn's 4-16 reply toTony's 4-12 plus an update, neurontin & tegretol questions
Tracey C 4-16 thanks for sodium amount in pickled ginger
Jack's 4-16 reply to Jon P's 4-16 web site for sodium listings in food
Karen K's 4-16 reply to Jon P's 4-16 update & more
June 4-16 Plavix, dental work & antibiotics - questions
Jon's 4-16 reply to June's 4-16 Plavix, dental work & antibiotics
Tony's 4-16 reply to Rick M's 4-16 blood pressure, risk factors & more
Stephanie 4-16 going "out" to eat - questions
Wendy B 4-16 book of food counts
Bill M's 4-16 reply to Autumn's 4-16 Neurontin experience
Phyllis A's 4-16 reply to Cheryl's 4-12 hypertrophic cardiomyopathy
Mary Lou's 4-17 reply to Autumn's 4-16 neurontin experience
Ginger 4-17 rib pain questions & more
Jon's 4-17 reply to Ginger's 4-17 rib pain relief and more
Henry S 4-17 intro & thanks
Joe S 4-17 food dyes, high BP - questions
Judy 4-17 question - sleeping on left side
Andrea M's 4-17 reply to Jon's 4-16 chest pain & an update on fainting
Jon's 4-17 reply to Andrea M's 4-17 chest pain experience
Laura 4-17 seek heart transplant experience
Wendy B's 4-17 reply to Stephanie's 4-16 sticking to low sodium diet
Bill D's 4-17 reply to Ginger's 4-17 rib injury pain
Joanne K's 4-17 reply to Jan R's 4-14 chest pains
Jon 4-17 page updates and additions
Pauline 4-18 seek doc in Delaware
Ruthie A's 4-18 reply to Autumn's 4-16 neurontin experience
Jon's 4-18 reply to Autumn's 4-16 neurontin experience
Ruthie A 4-18 chest pain
Ginger 4-18 update, second opinion question & more
Herbert L 4-18 pickled ginger sodium content
William B 4-18 seek specific heart info
Tracey C 4-18 anger makes me feel rotten - why?
Jon's 4-18 reply to Tracey C's 4-18 CHF meds and hormonal responses
Jon 4-18 site will be down briefly
Jon 4-20 I'm back, healthology links & more
Jan R's 4-20 reply to Joanne's 4-17 chest pains
Karen K's 4-20 reply to Ginger's 4-18 diet, doctors, update & more
CJ 4-20 confused
Bill B 4-20 trip to the ER
Jon's 4-20 reply to Bill B's 4-20 blood level of sodium
Jack's 4-20 reply to Herbert L's 4-18 sushi and raw fish
Jeanette W 4-20 throat treatments, sleep study & more
Carol McAfee 4-20 intro, EF, questions
Kay B 4-20 good Coreg experience
Cristina 4-20 asthma, bad backs, low sodium food resources
Jon's 4-20 reply to Cristina's 4-20 asthma meds, hormones
Ginger's 4-21 reply to Karen K's 4-20 update, finding new dox, faith & more
Gail 4-21 questions about vision & more
Autumn 4-21 bad backs, neuropathy, sleeping & more
Doris R's 4-21 reply to Jon's 4-20 what can replace albuterol?
Emily 4-21 something isn't right but what to do?
Jon's 4-21 reply to Emily's 4-21 see a CHF specialist
Peggy 4-21 to Ginger and Emily
Karen K's 4-21 reply to Ginger's 4-21 docs, meds, diet & more
Jon's 4-21 reply to Karen K's 4-21 water intake
Autumn's 4-21 reply to Doris R's 4-21 breathing problems
Jon 4-23 posting, names
Ruth 4-23 still feel bad - what to do?
Ginger's 4-23 reply to Emily's 4-21 EF, dox, update & more
Ginger's 4-23 reply to Peggy's 4-21 second opinions & more
Jon's 4-23 reply to Ginger's 4-23 talking to doctor number one about second opinion
Vee A 4-23 potassium equivalence questions
Sharon P's 4-23 reply to Stephanie's 4-16 eating at relatives' houses
Roz 4-23 da MUGA scam, test question
Jon's 4-23 reply to Roz' 4-23 thanks, I'm not sure on that test
Jan's 4-23 reply to Emily's 4-21 doctor shopping questions
Jon's 4-23 reply to Jan's 4-23 doctor shopping
Julie's 4-23 reply to Gail's 4-21 eyesight getting worse, meds
Marsha H's 4-23 reply to Jan's 4-23 advanced directive forms
Marsha H 4-23 medical records, internist vs GPs
Jon's 4-23 reply to Marsha H's 4-23 medical records, internist vs GPs
Mary Lou L 4-23 url of possible interest
Stephanie M's 4-23 reply to Ruth's 4-23 difficulty in stores and malls
Jon's 4-23 reply to Stephanie M's 4-23 one possibility
Joshua T 4-23 Coreg and edema question
Karen P's 4-24 reply to Jan's 4-23 advanced directive forms
Russ B 4-24 why Coreg?
Jon's 4-24 reply to Russ B's 4-24 Coreg info
Herbert L's 4-24 reply to Jack's 4-20 sushi
Betty T 4-24 hypothyroid questions
Claire E 4-24 stress & meds, got my SSD!
Sid K 4-24 why not fosinopril (Monopril) ?
Pam A 4-24 questions - chat times, oxygen use
Jon's 4-24 reply to Pam A's 4-24 chat times
Mike J 4-24 routine testing, Coreg
Jon's 4-24 reply to Mike J's 4-24 routine testing
Sharon P's 4-24 reply to Jan's 4-23 advance directive info
Ellita A 4-25 transplant, tikosyn questions
Ira M 4-25 why do past heart surguries prevent transplant?
Gino's 4-25 reply to Sid K's 4-24 ACE inhibitor therapy for CHF
Mike J's 4-25 reply to Jon's 4-24 dox and blood testing
Jon's 4-25 reply to Mike J's 4-25 dox
Rieale 4-25 MIRACLE trial has been for me!
Jon's 4-25 reply to Rieale's 4-25 sounds good, a question
Jerald 4-25 can Lasix cause severe itching?
Sid K's 4-25 reply to Gino's 4-25 thank you for sound advice
Retta 4-26 is this CHF? & more
Jon's 4-26 reply to Retta's 4-26 one suggestion
Retta 4-26 seek CHF doc in Baltimore, Maryland
Walter K 4-26 seek Toprol XL users experiences
Tracey C 4-26 update, dropping meds
Jack D's 4-27 reply to Tracey C's 4-26 dropping meds
Jennifer Kitchin 4-27 any actors among you?
Valerie D 4-28 intro, exercise question
Ruth P 4-28 my husband died, prayer request
Wendy B 4-28 exercise (yoga) question
Stephanie's 4-28 reply to Ruth P's 4-28 condolences
David 4-28 seek Florida CHF doc & more
Mary Lou L's 4-28 reply to Ruth P's 4-28 condolences
Hope M's 4-30 reply to Walter K's 4-26 Toprol XL and fatigue
Jerry's 4-30 reply to Claudia's 4-28 itching
Joe S 4-30 activity limitations
Lisa E 4-30 Myovive, low BP questions
Jon's 4-30 reply to Lisa E's 4-30 Myovive
Tracey C's 4-30 reply to Wendy B's 4-28 yoga
Marica 4-30 seek CHF doc in London, Ontario
Walter K 4-30 Toprol XL and fatigue
Claire E 4-30 yoga question
Nadine's 4-20 reply to Stephanie's 4-28 mall fatigue
Autumn A's 4-30 reply to Wendy B's 4-28 exercising
Wendy B 4-30 thanks for replies
Molly B 4-30 seek low sodium angel food cake recipe
Jon P's April 16 reply to Jack's April 12, 2001 - Hi, I went to the USDA site listed in Jack's April 12 post and found over 6,200 foods and variations listed, with more information than I would ever want to know! This seems like a very useful site to me. Sushi wasn't listed but I typed in "fish" and it came up with every kind of fish I ever heard of, and each type was listed in every way, including raw, broiled and fried. I think sushi fits in there somewhere but alas, no pickled ginger. I would recommend the site to all who are interested in knowing what's in your food. firstname.lastname@example.org
Jon's note: pickled ginger averages 105mg sodium per ounce
Tony's April 16 reply to Joe S' April 14, 2001 - Hi Joe, You asked how I determined what things were causing the fluctuation. Actually, it is an in-progress process of elimination that has now gone on for over 15 years. Personally, I find it fascinating because the factors that influence my heart rhythm, my blood pressure, and my other CHF symptoms are very complex and confusing. I don't believe that doctors can do their best job for a patient by spending a few minutes reviewing that patient's history and examining the patient's symptoms at the time of visit only. Holter monitoring helps by recording a patient's heart rhythm irregularities in their normal environment over a 24 hour time period but doctors have to spend sufficient time analyzing and evaluating the results.
Let me attempt to answer your question in an e-mail, if you don't mind. It would be too lengthy to post. Basically, what I have found out about improving my own heart disease has been through the process of elimination over many years. You said you think your increased symptoms are related primarily to food items and not to breathing pollens and pollutants in the air. Do the same food items always affect you the same way? If not, why not? Could it be the level of pesticides on or in the food? I found out that eating dairy products such as low salt Swiss cheese was giving me serious rhythm problems so I stopped eating dairy products, until I found out that I could eat them as long as I did so at least 3 hours away from my Lanoxin or verapamil dose. In my case, a reaction to a food item may also happen depending on an encounter with a different offending substance, food, drug or event.
I will write down my experiences and ship them to you in an e-mail. I would really be interested in your own findings since I still suffer from serious heart disease and am still looking for answers. I have looked up flaxseed oil and am going to get some, and try it away from my other meds and in a very small dose to start with. Thanks for that tip! Best of health, Tony. T0nyt@yahoo.com
Rick M's April 16 reply to Tony's April 13, 2001 - Hi, I am writing in an attempt to help Tony understand the probable causes of his BP problems. Unlike the jocular tone attempted by Jack and others, this is a serious attempt at putting Tony on the road to recovery. Tony's 8,500 BP readings indicate a rise in BP between 9 PM and 1 AM. This is certainly a clue of great importance. A study by the Multi-Media Association shows that television viewing is at its peak between these hours and that peak viewership is associated with increased tension, which is further associated with increases in BP. Ergo, Tony should sit further away from his TV set during these important times. Crumbling up aluminum foil between the set and the sitter will also help.
The use of WD-40 is not recommended, as this substance increases electrical conductivity and could cause a home BP monitor to show high readings. This is similar to the well known complication of using "Long Life" batteries in medical devices.
Finally, since I dare not touch on blue dye in blue jeans, we come to apples versus melons. CHF patients who eat melons without peeling them are letting themselves in for a some serious trouble. It has to do with sodium in the skins but I'm not entirely sure, so I wouldn't want to cause anyone needless concern. I hope this helps. email@example.com
Charles K's April 16 reply to Jon's April 14, 2001 - Hi, When I see my doctor next week I'll ask again about the pains. He is a HF specialist whom I trust. I had a scope done when I was first diagnosed with CM and my arteries are fine. I'll let you know. firstname.lastname@example.org
Jon's April 16 reply to Charles K's April 16, 2001 - Hi Charles, If your arteries are still clear and your heart is in sinus rhythm, maybe you belong to a small group of CHFers who get angina for no known reason. Welcome to the club - I am unfortunately in it as well. It is unusual though, so I hesitate to accept a doctor's declaration that this is the case until other possibilities are clearly ruled out. Jon.
Ernest D's April 16 reply to Heather's April 10, 2001 - Hi Heather, In answer to your question about class 7 on the heart transplant list, it means that I am on inactive status until I deteriorate to the condition that I was in perviously. I go to be re-evaluated in June since 5 years have passed since I was classified as inactive. I hope this helps, Ernest D. email@example.com
Autumn's April 16 reply to Tony's April 12, 2001 - Hi Tony and all, The apple peels and grapes contain a natural chemical that can cause reactions in certain people, most notably hyperactive children. There was a book in the 1980s about it. I know I do not feel well if I eat grapes but I also have that reaction to several other fruits. I can eat apples and carrots with no problem.
I have been having a lot more breathing problems with humid air and it is really affecting my exercise ability. I need to reduce my intensity of exercise during humid weather. Also, I find myself becoming more and more sensitive to coffee, and find that even a cup can bring on breathing problems. Thankfully, I rarely take in caffeine but should probably give it up completely as my doctor wishes.
My doctors are talking about putting me on Neurontin or Tegretol for pain control for chronic hip bursitis and neuropathy. Can anyone tell me the success of these meds with pain and how bad the side effects are? Do they have a negative affect on the heart?
It's been a tough winter with pain but things seem so much better now with spring here and I can get out and about more. With my heart, I feel blessed. My heart is usually doing quite well. My energy level is compromised but I am able to accomplish the necessary things. This spring I am changing things in my garden so it won't need as much maintanence. I am thankful to get to do this thing I love. Several years ago I gave up my other passion, photography. I have decided to take it up again and to do outdoors photography this summer. I also bought a tape to learn yoga for relaxation and blood pressure control. I hope to help extend my life and quality of life by feeding my spirit as well as my body since I cannot take most heart meds due to allergies. AmberDawn-Blzn@webtv.net
Tracey C, April 16, 2001 - Hi Jon, Thank you so much for listing the pickled ginger content. It's been driving me nutso as I couldn't find it anywhere. :-) Tracey. firstname.lastname@example.org
Jon's note: More sodium listings here
Jack's April 16 reply to Jon P's April 16, 2001 - Hi Jon, I stand corrected. By limited, I meant limited to grocery store type stuff. That site is a good place to look up food, but only if you prepare it yourself or buy it boxed or canned. Stuff you get at a restaurant you can't fidn a listing for. Sushi can be hundreds of different ingredients. Jack. email@example.com
Karen K's April 16 reply to Jon P's April 16, 2001 - Hi Jon, I was pleased to see that someone found the USDA site to be as beneficial as I did. I don't eat many exotic foods and have been able to use the site a lot to track my potassium consumption.
It will be interesting to see tomorrow what my blood tests indicate. I have an appointment at the CHF Clinic at the University of Iowa. My first visit there was last week and I sort of got the impression they didn't think I was ill enough to be there but they did tell me to come back in a month and also changed me from Capoten to Lotensin.
With all of the stuff going on in my life right now I can't tell if I'm tired because of the medication change or am just emotionally drained. My daughter is doing well with her chemo treatments. She has a treatment once every 3 weeks on a Friday and goes back to work the following Monday. She looks well. The girl who helped her select a wig and who shaved Wendy's head and styled the wig did an outstanding job. Yesterday Judy (the stylist) gave me pictures of Wendy before her head was shaved and a picture with the wig. There is a very slight difference between the two pics and if you didn't know Wendy, you wouldn't realize she was wearing a wig.
We're getting ever so close to starting our one-level house. It will be a blessing not only for my husband but me as well. Two flights of stairs and carrying groceries from the garage is a challenge. I have started shopping more frequently to avoid really heavy loads and also storing some stuff in a second refrigerator we have in our family room. The CHF doc mentioned they might do a "squeeze test" which I assume means checking my EF, although I'm not sure if this will be done tomorrow. Karen. firstname.lastname@example.org
June, April 16, 2001 - Hello everyone, This is my first post here. Does someone in this group know something about this which I have not been able to confirm myself? I have blocked carotid arteries and am taking the antiplatelet med Plavix. However, the Plavix causes my nose to bleed slightly all the time. I've been advised that because I have an arrhythmia I should get an antibiotic before any dental work. Surely, the bleeding in the nose is equivalent to the bleeding that might occur during dental work. As a patient, must I choose between the risk of a stroke and the risk of cardiomyopathy? Thanks for reading this and for replies, June. email@example.com
Jon's April 16 reply to June's April 16, 2001 - Hi June, The antiobiotic is to prevent clumps of bacteria from entering your bloodstream all at once when knocked loose from your mouth during dental work. Such bacteria clumps may not be a risk for stroke but can make it to your heart, lodge there, and cause lethal infection. It's infection rather than stroke that the antibiotics work to prevent. People with valve disease and arrhythmia are at higher risk for this.
While taking an antiplatelet med, you should have a long talk with your dentist before considering dental work in the first place for exactly the reason you mention - bleeding risk. Jon.
Tony's April 16 reply to Rick M's April 16, 2001 - Hi Rick, Thanks for your comical response but you said that my 8,500 BP readings indicated a rise in BP between 9 PM and 1 AM. The old readings were dangerously high between 9 PM and 1 AM but after after showing the charts to my heart doctor, we were able to increase my Verapamil and alter the schedule and - problem solved. What a relief!
People laugh but taking a proactive role trying to understand what is causing heart rhythm and blood pressure problems really can be a benefit. Unfortunately, the factors that cause these problems are very complex and confusing, and even the medical community doesn't have all the answers. Could dyes be a villain? If so, I wonder how many children suffer because of the chemicals that are put in bedding materials and clothing. People also might joke at that comment but remember, the ancient, most powerful priests beheaded those that said that the sun did not revolve around the earth. At least a joke cannot behead someone! <g> firstname.lastname@example.org
Stephanie, April 16, 2001 - Well, I blew it big time! We went to my Mom's for Easter. This was the first time since I was diagnosed with CHF that my mom had cooked a feast. I had given her a few requests ahead of time but on Easter there was not one thing on the table that was good for me to eat. Guess what? I ate it anyway. Of course I didn't want to hurt her
feelings, but it was my choice. Tonight I feel lousy, with pressure in my abdomen, coughing, and shortness of breath.
I am so angry at myself and sometimes I am just tired of trying. Thanks for listening. Does anyone have any hints on handling future situations? Do I need to go to the doctor or will this improve by watching what I eat and take care of myself? I just feel so dumb! email@example.com
Wendy B, April 16, 2001 - Hey everyone, If you haven't got access to a computer when you need to know nutritional values - I'm equipped with a teenager and sometimes our computer is hard to get to - get a copy of a book by Corinne T. Netzer called "The Complete Book of Food Counts." It's a paperback published by Dell. I found it at the drugstore for $7.50. It's been my bible since I was diagnosed with CHF last year. I carry mine around in my tote bag. It's got, among other things, counts for many fast food places. I know we're not supposed to be in them but in an emergency, if you need to eat,..., and thousands of listings. It even includes pickled ginger! firstname.lastname@example.org
Bill M's April 16 reply to Autumn's April 16, 2001 - Hi, I have just reached my goal of 900mg Neurontin and it has really relieved my pain. The only side effect to hit me is drowsiness. I found that if you start out at low levels (100mg) and slowly build up, you can avoid most if not all of the drowsiness problem. email@example.com
Phyllis A's April 16 reply to Cheryl's April 12, 2001 - Hello Cheryl, I also have Hypertrophic Cardiomyopathy or IHSS. I have not posted in a long time because I'm not feeling well these days due to other illnesses like fibromyalgia. I didn't need surgery but docs are talking pacemaker after trying different meds first. I will pray for you about your surgery. God bless. firstname.lastname@example.org
Mary Lou's April 16 reply to Autumn's April 16, 2001 - Hi Autumn, I suffer from neuropathy too. Mine is burning pain and numbness of both feet. My rheumatologist sent me to a neurologist. After trying several meds and combinations of meds, we settled on both neurontin and carbatrol, which is the same as tegretol except taken in 3 daily doses rather than 4. It saves my taking one capsule a day, which doesn't seem like much considering the number of meds I take, but he is trying. <g>
I have found some relief as far as lessening of pain and burning of my feet, but they are still just as numb as before. My doctor started my neurontin at 300 mg BID and let me increase the dosage by doubling the dose every week until I found a level suitable for me. I am now taking 1800mg BID. I took 2400mg for a week and then decided I'd see how 1800mg BID would hold back the pain, and it worked just as well as the 2400mg so I stuck with 1800mg, all of which was with my doc's permission. The only time I had a side effect was the first 2 days when I felt as though I was floating and kind of spacy, more so than usual. <g>
I haven't noticed any negative effect on m heart. My neurologist thought the meds were all right and he is aware of my condition. I see my CHF doc in about 2½ weeks and I'll see then what he has to say. The only change since I saw him last is that carbatrol replaced tegretol. Good luck in whichever decision you make. My best to you, Mary Lou. MLBinks@aol.com
Ginger, April 17, 2001 - Hiyas, I need help. I hope someone in here has been through this and will have some tips. I spent Easter in the ER to find out I have 2 fractured ribs way up high, like right next to the breast, but it feels like it is in it. The pain is unreal. They gave me pain meds and said to rest but they didn't say what to do when it hurts to even take a deep breath, move, or cough before the pain pills kick in. They din't say whether ice or heat would help this. I know one or the other does, not which one, though. The only way I am even up is by taking the pain meds when I open my eyes and waiting for them to kick in but it doesn't last very long. Any tips or ideas on how to get through this would be so appreciated that I will give you my first born child for a week. <g>
Much to my surprise, my cardio doc okayed me taking the steriods for the neck thing. So now I am on Medrol, Parafon forte, 600 mg of ibuprofen and Percocet and that's not counting heart meds. Even with all that, the pain is unbearable when the pain pills wear off like now in the middle of the night. I need some advice quickly here before I jump off a bridge that has no water under it. I will try today to find a good bone doc but how I am going to manage this I haven't figured out yet.
A year ago my doc said he needed to do a bone density test since I had a hysterectomy in 1995 and I do not take estrogen due to my family history of cancer. I was using soy isoflavones. I guess maybe it wasn't good enough to keep my bones strong because of the way this happened, which it shouldn't - by a bear hug where you get hugged very tight and it lifts you up off your feet. My hubby has done it a thousand times before without something like this being the result. I am not so sure the hospital believes me that it really happened that way but I don't care about that. All advice is welcomed and any tips on how to find a good orthopedic doc would help too.
Thanks you guys, for being here. My family sure has no clue what to do for me an God bless them, they try. Even my 9 year old wants to give massages. :-) I guess a chiropractor is out for right now. It's times like this that I meant when I said in a post that I think at times I have a hard time keeping up my faith. Because what goes through my head is, "What did I do to deserve this?" I try to be a good person and it is real hard not to have a big pity party right now but I am determined not to. Stay well, ya'll. Hugs and prayers, Ginger.
PS. Lynn, thank you for your e-mail and I will answer it in a few days when I can sit a little longer. email@example.com
Jon's April 17 reply to Ginger's April 17, 2001 - Hi Ginger, I had a similar problem with pain from a work-related rib injury once. The only pain relief came from nerve blocks. The process of getting them is horrible but they give 100% pain relief for an extended period of time and they can be repeated every few days. They also put steroids directly into the inflamed tissue, which speeds healing. Usually, these should only be done by anesthesiologists at a pain control clinic because they know how to do it without risking a punctured lung from the needle (pneumothorax). The shots are non-narcotic and given through needles the size of a 30-06 rifle but trust me - they eliminate pain like you won't believe - if you survive the process. <g>
Ginger, remember John 16:33, "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." If a prideful cabinetmaker named Jon had never gotten heart failure, this site would never have been. Thus, out of my hurt came great good. If I had never had a terribly painful rib injury, I would not be able to tell you a sure way to get rid of your pain. Be patient and sure in your faith, for God can work even the worst circumstances to good, whether we realize it at the time or not. Amazing grace, indeed. Feel free to e-mail me anytime. Jon.
Henry S, April 17, 2001 - Hi, I have just read through this site and it is fantastic. I had angiplasty in 1990 and then in 1999, I had a triple bypass. The doctors stated I was good for another 20 years. Hmmmmmm! That didn't hold up for long. I was told by my cardioligist a few weeks ago that I have CHF. He recommends a cath to make sure I don't have a bypass closing up. If so, he says a stent should do the job. The letters here have answered a lot of questions that I had and I want to thank all of you and especially Jon for this site. I will be a regular user here as long as I am around. A little dry humor. <g> Thanks, Henry. firstname.lastname@example.org
Joe S, April 17, 2001 - Hi, I had a major bout with extremely high BP Saturday. My wife and my detective work determined I had eaten an onion in a sandwich. This is my major nemesis. Secondly, regarding dyes, before they diagnosed me with CHF all my doctors thought I had sinus or lung infections and prescribed antibiotics. I had a big-time reaction to one and got hives. The dermatologist told me a lot of it was also caused by food dyes; I can't remember the names but they were primarily red and yellow dyes. Any ideas? Joe S. email@example.com
Judy, April 17, 2001 - Hello, This might seem like a dumb question. I have cardiomyopathy. Does anyone else find it had to sleep on my left side. I can't say it hurts just feels uncomfortable. Is this a normal feeling? Thank you, Judy. firstname.lastname@example.org
Andrea M's April 17 reply to Jon's April 16, 2001 - Hi Jon, I saw in your post to Charles that you also have chest pain for no apparent reason. I do too! It has been supremely frustrating and my cardiologist remains puzzled. Since my last post, I have had a couple of Holter studies and found that I have a fairly mild supraventricular tachycardia. I had 58 episodes in 12 hours but my maximum heart rate was 158; not too bad for SVT. My beta-blocker dose was raised again. I'm now on 50mg of metoprolol BID, along with Zestril, Lasix, and digoxin.
You may recall that I was having some nasty fainting spells. Much to my embarassment, after raising a fuss to my cardiologist, my family doctor found a very yucky inner ear infection. After 10 days on antibiotics, my fainting spells cleared up and some of the dizziness went away. I remain mortified!
I still am weak, tired and dizzy. I also don't sleep much and get chest pain a lot. The alternative, however, is not so great either! <lol> Do you have any theories as to what causes this chest pain? My docs have ruled out blockage and my SVT occurs most often without pain but the pain I have is similar to what I feel when I am having episode of SVT, kind of a hollow pressure like pain. It usually takes my breath and I have to sit down. I hope your family is grand. God bless you and this amazing group of people. Hugs, Andrea M. email@example.com
Jon's April 17 reply to Andrea M's April 17, 2001 - Hi Andrea, When I first got chest pain, it coincided with an episode that got me an ambulance ride so I remember it pretty well. The CHF doc said a small percentage of people with idiopathic dilated cardiomyopathy suffered classic angina - a feeling of pressure, squeezing, breathlessness and pain - for an unknown reason. He just wanted to be sure that I had no blockages or arrhythmias causing it and since I did not, I was just one of the lucky few. I take sublingual nitro and it works well for most of the episodes. Jon.
Laura, April 17, 2001 - Hi, I am wondering if there is anyone who has had a heart transplant who is successfully on very low doses of immune suppressants. Thank you. Jon's note: Please reply by e-mail firstname.lastname@example.org
Wendy B's April 17 reply to Stephanie's April 16, 2001 - Hi Stephanie, I find it really hard to stick to my diet. It's not that I'm overweight but the low sodium thing gets to me. I'm the type who would salt my whole steak before I cut into it and then salt each bite, just to make sure! What I like to eat is things like smoked salmon, pickles, Buffalo chicken wings; you get the picture, not to mention pepperoni, sausage and extra cheese on pizza. However, I've learned o balance things out. I never, ever salt my food or use it in cooking and if I know I'm going out for dinner or eating something basically illegal at lunch, then breakfast is fresh fruit and the third meal is salad with no-sodium dressing. You've got to make sure that your day is under your assigned number of sodium grams and you'll probably be okay. email@example.com
Bill D's April 17 reply to Ginger's April 17, 2001 - Hi Ginger, I did something like that. I rode my bicycle off the dock and crashed into a boat below. They took me to an ER where they taped me up with a bandage that was some kind of elastic. Well, I couldn't stand that bandage so I took it off. I got a pill bottle full of Percodan. That's like Percoset with aspirin in it instead of Tylenol. I just kept taking Percodan till the pain went away. It took about 2 or 3 days till the pain was gone. I just lay there in a blue funk. Don't pay attention to the directions. Just take what you need till the pain goes away! Bill D. firstname.lastname@example.org
Joanne K's April 17 reply to Jan R's April 14, 2001 - Dear Jan, I also get sharp pains which seem to be somewhat episodic. The regular pain I get is a deep burning and has been diagnosed as angina, although I have no blockage. No one has any idea about the sharp pains though. I have thought at times that perhaps it is a valve malfunctioning on an occasional basis so it doesn't show up on echocardiograms but that is just a guess. JoKayser@adelphia.net
Jon, April 17, 2001 - Hi everyone, The following pages on my site have been added or updated:
Pauline, April 18, 2001 - Hello everyone, I hope someone can help. I was admitted to the hospital last August with severe edema and shortness of breath. I was diagnosed as heart failure and pulmonary hypertension. I am looking for a cardiologist with a good bedside manner. My own search has come up negative. I live in northern Delaware, and would appreciate any suggestions or input. Thank you, Pauline. VivaGesuAveMaria@aol.com
Ruthie A's April 18 reply to Autumn's April 16, 2001 - Hi Autumn, and everyone else, too! I take 2700mg of Neurontin divided into 4 doses every day. It does not have any effect on my heart as far as I know. The best advice I can give you is to continue taking it as long as you and your doctor think you need it. Keeping the dose constant will give you the best relief. The only side effect I have experienced is drowsiness. I take such a high dose that I do not drive except in an emergency. I must nap daily and if I don't, I will fall asleep during dinner, but napping is also good for my heart so I don't complain. I also have to keep my feet at an even temperature or the neuropathy is intolerable. Those times require a pain medication as well.
Hang in there. Neurontin is a good drug and is very helpful in treating the pain and tingling of neuropathy. Feel free to e-mail me if you have any questions, Ruthie A. email@example.com
Jon's April 18 reply to Autumn's April 16, 2001 - Howdy-doo, I hesitate to bring this up but since all the neurontin reviews have been raves, maybe I should chime in. I tried neurontin for foot pain and had a serious reaction, where all my nerves got hypersensitive. Just touching something - including my skin touching my clothes - caused me great pain, so it backfired in my case. My doctor said he had never heard of such a reaction so it's very unlikely to affect you but that's my experience with it. If I were you, I'd give it a try - it has got to beat painkillers! Jon.
Ruthie A, April 18, 2001 - Hi everyone, I have been taken to the ER more times than I can count for chest pain. I have gone through more chemical stress tests than I care to think about. The docs find nothing. I will not go through a heart cath unless it is a life-threatening situation because I am allergic to a compound in the dye so there is always the chance that I do have some small blockage causing my pain but my CHF doc says it is doubtful. Nonetheless, I have regular pain that goes down my left arm. I take 120mg Imdur (a nitrate) every night. It accomplishes 2 purposes: getting rid of my chest pain and keeping fluid out of my lungs at night while I am lying down. I cannot elevate my bed or sit propped up because of a bad back. Imdur causes the fluid to pool into my feet and legs. Then, when I take my diuretics the next day, the fluid is eliminated. If I do not take Imdur daily, I have to take a lot of sublingual nitroglycerin and then not breathe very well at night. For me, I would rather take the Imdur! Ruthie A. firstname.lastname@example.org
Ginger, April 18, 2001 - Hi, I want to thank you all for your tips. Jon, I dunno about those shots; sounds sort of like adding pain to pain. <g> My best help right now is my recliner chair. Ya don't have to try to get up or down and that does make it easier especially if ya have a water bed like I do, but won't have much longer. This has cured me of wanting to keep a water bed. They are no help when ya hurt.
Jon, thank you for reminding me what faith is about. :-) It helps when you put it the way you did. I might e-mail you - lucky you, huh?!
Bill, do ya have much choice but to lay there?! <lol> As for the Percocet, Bill, I am taking them a little more often then it says to but they scare me. I have been on them off and on now for a long time, and scared of addiction. My cardio doc also gave me a scrip for Oxycontin, which is a time-release Percocet but I haven't filed it yet. I often wonder how bad they really are for our hearts, plus I remember someone else in here having to go get detoxed off them after being on them a long time for back pain.
This 3 AM thing is getting to be a habit. It's about the time all my pain meds have worn off and I have to get up and wait for them to take effect, then it's hard to go back to sleep. I know a lot of you know that feeling. I do think maybe the worst is starting to pass because this morning at 3, even though the pain got me up, it wasn't quite as bad and maddening as last night. As for what my heart is doing, I really don't have a clue. All I know is that I am back up to 30/12.5mg of Zesteretic. I won't know if numbers have come back up till December, when he does my next yearly echo. I do know a lot of my PVCs that were gone are now back but that could be from pain; maybe all the pain meds or even my lack of being able to do much but walk around the house. It was exercise that helped them to stop in the first place.
Like I mentioned right before I got hurt, I had found a CHF clinic about a half hour drive from me and am seriously considering changing to it or at least going there for a second opinion. My cardio doc is also an internist and he is the one that was gonna do the bone density test last year that never happened, the Vo2max test a few months back he still hasn't bothered to do - but has me on albuterol for what he thinks is asthma, which I have never had before in my life. It sounds so familiar like so many posts, doesn't it? I was surprised he okayed me taking steroids. I did for one day but they made me feel so sick to my stomach and plain weird that I threw them out last night. Besides the fact that all the side effects listed are things like: may cause CHF, fluid retention, loss of potassium, etc,... They lower your immune system and are not somethig I want to take. It sort of made what little faith I had left in my cardio doc go away, ya know?
Is it possible to go for a second opinion without your doc knowing about it if you're not in an HMO and don't need referrals? I would prefer my cardio doc not to know until after I go and decide if I do really need to change docs. Okay, so I am a wimp and don't want to hurt his feelings. <g> He has been good to me for the last 3 years, but he just makes me leery the last 6 months. I know these problems are nothing compared to what a lot of you are going through so I am glad you put up with me and my whining right now since I really don't have a sounding-off place or a place to go to for advice but here because I am the caregiver for most of the people left in my family. Somehow I always feel better after talking to you all. A person could not ask for a better group of friends than here. :-) Thanks y'all. Stay well. Hugs and prayers, Ginger. email@example.com
Herbert L, April 18, 2001 - Hi, My jar of sweet pickled ginger, which is used in making sushi, says it has 55mg sodium per tablespoon. This product is not required in sushi but sure makes it taste good. Wasabi and soy sauce are normally not used with sushi except when you have raw fish on it. Luck to all, Herb. firstname.lastname@example.org
William B, April 18, 2001 - Hi, I have had a problem finding info on a particular problem. The frontpart of my heart is blocked off and both sides are damaged. The doc wants to drop in one artery on the front. Is there info on this one part of the heart? It seems that most all sites I found deal with other problems. I may not be able to see the trees for the forest. Thanks, William B. email@example.com
Tracey C, April 18, 2001 - Hi everyone, I just finished getting really mad for the first time (amazingly) since I was diagnosed. I now feel really, really crappy. What is it that does this? I'm sure I had CM long before I was diagnosed and got mad plenty of times, and never felt like this. Do the meds cause some kind of reaction to the anger hormones? Does anyone else experience this? Thanks for listening, Tracey. firstname.lastname@example.org
Jon's April 18 reply to Tracey C's April 18, 2001 - Hi Tracey, Yes, both ACE inhibitors and beta-blockers change our hormonal responses. Hormones are produced same as before but now the meds block your body from handling them in the "normal" fashion and this can leave those stimulating substances circulating in our bodies much longer, which is enormously draining. Any stress reaction - not just anger - can trigger this. If I get really stressed, I have to lie down for an hour because I get so weak. Jon.
Jon, April 18, 2001 - Hi everyone, I need to install and set up a new hard drive. It's cheaper to replace mine than to add one so I have to replace it physically, fdisk and format and reinstall everything, which will take awhile. I'll be back in 24 to 48 hours (I hope). I've never done this before. <g> Jon.
Jon, April 20, 2001 - Hi everyone, I admit I was back online early today but was too tired to get back into it just then. I'll catch up over the next 24 hours, I hope. I had to put in a new modem also. Tomorrow my ISP guy is putting me on a new mail server with my own DNS, with greatly extended capabilities and as soon as I learn to use them I hope to have it a bit easier.
I rearranged a few of my pages to get the Healthology link on the page. This is a "partnership" that brings a wide variety of cardiology news and information to you via both online articles and video streams. Give it a try and let me know what you think. I haven't got the Jon's Place graphic quite right on the top of the Jon's Place Healthology page but am working on it. ;-) Jon.
Jan R's April 20 reply to Joanne K's April 17, 2001 - Hi, Joanne, Jon and Charles and others with UFCP (unidentified chest pains) <g>, I have had a cath and was given the all-clear on my arteries. Looking back through my records, my sharp pains were identified as ectopic beats just before runs of V-tach. They knew this because during the use of Holter monitors, which I wore once a month during my pregnancy, I would identify "sharp chest pain, palpitations" in my Holter diary. The time of these matched up with ectopy followed by V-tach.
I had a treadmill test to rule out Prinzmetal's angina, which it did. I think this is evidence enough to convince me these pains are related to arrhythmia. However, it doesn't give me much satisfaction because I now have my friend Mr. ICD and shouldn't be having arrhythmias, therefore I shouldn't be having painful ectopic beats. These definitely seem to be related to fatigue, for I only get them when I've been doing a lot. They are scary though, as is any chest pain to a heart patient! If any of you have arrhythmias, perhaps you could talk your doc into a Holter to see if your diary of pains matches any activity in your heart. I'd be very interested to know if we are all suffering the same thing that the doctors "don't know anything about!" Thanks, Jan. email@example.com
Karen K's April 20 reply to Ginger's April 18, 2001 - Howdy Ginger, I noticed the question in your last post regarding finding another CHF doc without a referral. I made my own appointment at the heart failure clinic at our nearby university teaching hospital. My doctor(s) are aware of it only because I did ask that reports be sent to them but I'm sure you could choose not to have them sent.
Yesterday was my second appointment at the CHF clinic. After my first visit, the doctor took me off Capoten and put me on 30mg Lotensin. The Heart Failure Clinic appears to be an entity in and of itself. I first have blood drawn, weight and BP taken. Then the nurse who manages the clinic comes in and talks with me and has me complete a questionnaire about how I feel compared to a month ago and in some instances to 2 weeks ago. Then I have to "walk the Walk." I'm put into a wheelchair, taken to a semi-secluded hallway, and told to walk up and down the hallway until told to stop or I would imagine when I dropped.
The walk part is interesting to me because my cardiomyopathy is fairly well compensated and I'm able to walk that hall like a trooper. Yesterday the girl who went with me also walked with me, although she said it is against protocol. I know that she records the distance covered in the allotted time although she didn't tell me how much I actually walked. I chose to walk back to the clinic; many folks come back in the wheelchair.
Then a Cardiology Fellow (I'm not sure what level this is in medical lingo) comes in and spends quite a bit of time talking. He listened to my heart and checked the veins in the side of my neck. Because I'm thin, the "exterior" vein protrudes and they have to make sure it isn't my artery that is swollen, which I guess is a part of edema. They also check my liver at the same time.
After our discussion yesterday, my Lotensin was increased to 40mg a day, which I found out earlier that day was the goal they were striving to reach because I had an appointment with my new family practice doctor and she actually remembered having read something about me prior to our visit. I also again talked with the Fellow regarding my elevated potassium level. For the next month I try a different regime with my diuretics. I have been taking 20mg Lasix each day and 25mg spironolactone (Aldactone). I am now to take 40mg Lasix on Mondays, Wednesdays, and Fridays only but continue with the spironalactone on a daily basis. I was interested to learn that every person's plateau for Lasix works differently. In some people 20mg will work while in others it may take 60mg to do the same job. It's not necessarily dependent on fluid consumption.
At the end of my appointment the doctor from the clinic came in and told me we will try this regime to see how my body responds; whether I do or do not retain fluids and how my potassium level is next time I go. I didn't get yesterday's results yet. The doctor said that spironalactone is an excellent medication but it's not worth my having to eliminate so many foods from my diet. It is almost impossible to eat healthily because all of the healthy (and some unhealthy) foods are high in potassium. I've really been struggling to enjoy eating. I can do low sodium with no problem but to enjoy a variety of foods and not consume potassium is nearly impossible.
I've been a bit long winded here and I'm sorry but I find all of this very interesting. Karen. firstname.lastname@example.org
CJ, April 20, 2001 - Hi, I just turned 30 and have been diagnosed with CHF and an enlarged heart. I am so confused and lost with nowhere to turn. I've searched and searched for info but nothing seems to answers my questions. I guess I am just looking for a friend who understands my problems and my fears, someone I can talk to who can relate. email@example.com
Jon's note: How about a first name for starters? ;-)
Bill B, April 20, 2001 - Hi, I try to keep a low sodium diet and I guess I must have gone too far. I got very dizzy and almost passed out. I lost the funtion of my right arm for about 5 minutes and ended up at the ER and found my sodium was very low; in the 120's while normal is 135 or so. I learned that if your sodium gets any lower than 120, you can pass out and even go into a coma. I thought I was having a stroke because of the arm thing - really scary stuff. God bless, Bill B. firstname.lastname@example.org
Jon's April 20 reply to Bill B's April 20, 2001 - Hi Bill and everyone, They measured your blood level of sodium, I am sure. That has nothing to do with dietary sodium intake, as far as I know. How much sodium you do or do not eat will not throw your blood level of sodium heavily in one direction or the other. I just want to be sure everyone realizes that. :-) You can look up hypernatremia or hyponatremia for more on this. Fluid intake - going way too far in either direction - can have an effect on blood sodium levels, though. Jon.
Jack's April 20 reply to Herbert L's April 18, 2001 - Hey Herbert, You say wasabi and soy sauce are only used on sushi when it has raw fish. The only real sushi that doesn't have raw fish is scrambled egg sushi. All the other stuff was invented in the USA. email@example.com
Jeanette W, April 20, 2001 - Hi all, I'm sorry I haven't been here in awhile but I've been in between Internet providers. I finally received my appointment for my sleep study and went to the pulmonary specialist on March 22nd. He told me I have a small larynx (throat) and that we have a couple ways to go for treatment. I can't even believed he suggested this one: having botulism bacteria injected into my neck to kill off tissue surrounding my throat. I told him that it was out of the question and if he even read my history of having DCM, my cardiologist would hang him from the highest tree and not from his neck. The second option is to have my tonsils and adenoids removed, then to scrape my throat. Of the 2, I went with the latter.
Has anyone ever heard of injecting botulism into the neck? It isn't a one time thing either, it is a series of shots. How painful would that be? Not to mention the effect it would have on the heart. I got this rotten disease by a viral infection to begin with. Why on earth would I subject myself to that all over again? Or am I just blowing this out of proportion and there is nothing wrong with this?
Anyway, on June 25th I go in for the sleep study and will find out more after that. I will be back online on the first of May so if you wish to reply to this, please e-mail me. I won't be able to read this board until then. Thanks to all and I am praying for you all every day. Jeanette841@yahoo.com
Carol McAfee, April 20, 2001 - Hi Everyone, This is my first time writing to anyone. I have CHF. When I left the hospital in July of 1999 I had 15% left of my heart. I had a stent put into my aorta and 3 arteries angioplastied. I am now down to 10% after going up to 20%. Needless to say I was very depressed when the 10% showed up but after reading some of your letters it seems that it is possible to have the reading go back up. Is this correct? At what percentage do they make the decision to put you on the transplant list? I would be going to Pittsburgh. Has anyone ever dealt with them? I have a lot of questions so I will be writing back. I have found it very interesting reading about things that can go up or down, and your reactions to CHF. Thanks for any replies. firstname.lastname@example.org
Kay B, April 20, 2001 - Hi, I want to post words of encouragement to CHFers who are trying to take Coreg because their doctor thinks it will improve heart function. Hang in there! The first 3 months I was on Coreg I felt like giving up but I gradually adjusted to Coreg. My EF was 25% to start and now one year later my EF is 58. I take 50mg Coreg every day and I feel great, although at first I could hardly sit up at much smaller doses. I also have been taking 150mg of CoQ10 a day although my heart specialist doesn't think that was key in my recovery. When my EF reached 38, my doctor told me I couldn't expect much more improvement. I also have COPD and am on oxygen 24/7. I've been going to Pulmonary Rehab 3 days a week for 6 years. I walk 35 minutes on the treadmill and lift small weights for 30 minutes. Good luck, Kay Brown. email@example.com
Cristina, April 20, 2001 - Hi everyone, Sorry, I've been busy with the kids and work, and
haven't had time to log on. Ginger, I also suffer from back pain due to scoliosis (I also have a Harrington Rod). The only thing that has truly helped - and I have tried them all - is deep massage. I wouldn't be able to survive without my massage therapist. Yes, it's more money to spend but I need to survive, and luckily my insurance company picked up the last few and reimbursed me.
As for your "asthma" my doctor always told me albuterol is not good for us CHFers; that it can race your heart. Maybe that's why you are getting PVCs again. Are you taking Coreg? I always felt "wheezy" when I was on Coreg, but don't feel that way on Toprol. It's amazing how it just went away when we switched.
Jon, I never heard about ACE inhibitors and beta-blockers affecting your hormones but that explains why when I get my period every month, for the first full day I am totally wiped and can't do anything. Do any other women experiencing this?
By the way, there are a lot of low sodium items in the stores, you just have to look. For those of us who enjoy fajitas with refried beans, Fantastic makes low sodium beans. Emeril Lagassi just came out with some salad dressings; one of them is low sodium - it's the vinagrette. We make a great tomato/cucumber/red onion salad with it. There is a buffalo wing sauce that's also low in sodium called Wing Time. They have their own web site. I think I have an easier time because my cholesterol is very low and I don't have to watch fat and cholesterol like those with coronary heart disease. We make steak (my husband is the chef). He marinates it with mustard and lime juice. Our local supermarket also sells "The Spice Hunter" spices, which they have many, many low sodium ones. One is fajita spice. Grated Parmesan cheese is lower in sodium than Romano. Check the containers. We found as low as 55mg per tablespoon. We also make our own Italian spaghetti sauce with low sodium crushed tomatoes and then we freeze a bunch. We also found this great low sodium salsa, which I introduced to Healthy Heart Market. The salsa is called Frog Ranch and if you like hot and spicy, this is the one. I hope all of you are well. Cristina. firstname.lastname@example.org
Jon's note: Mozzarella cheese imported from Italy should be almost zero sodium since salt is not used in making "traditional" Italian Mozzarella
Jon's April 20 reply to Cristina's April 20, 2001 - Hi Cristina, Hormones come in all "flavors." Only some of them are related to gender/sex. The neurohormonal system manufactures many different hormones, all of which play different parts. For instance, adrenaline (epinephrine) is a hormone. Among the substances affected by CHF meds are hormones like aldosterone.
Albuterol is a beta-agonist, meaning it will activate beta-receptors, which are heavily involved in the body's response to heart failure. Albuterol isn't good for you if you're a CHFer. Jon.
Ginger's April 21 reply to Karen K's April 20, 2001 - Hiya Karen, When you went for your first appointment, did you take copies of previous echos or other tests with you or just let them decide what they wanted to do? What made you decide to go to the CHF clinic in the first place, if you don't mind my asking? My insurance company changed networks and the only doc I have now that is on this new network is my cardio doc. I have to find a new PCP, GYN, orthopedic doc for my back and now my ribs. My cardio doc is also an internist so that has helped some, although in 6 months all he has done is blood work for cholesterol and liver, but no urine for the kidneys and I take quiet a bit of ACE inhibitor.
I haven't yet decided how to go about finding a good PCP but figured what I really need to start with is a CHF clinic and see where I stand heart-wise. I was like you, very well compensated with my DCM and stable with an EF of 55% untill 6 months ago when he dropped my meds and my EF fell to 40%. All he has done is re-up the ACE inhibitor to 30/12.5. The 12.5 is the diuretic in it, Zesteretic. He kept me o Lipitor. Those are the only heart meds he has me on now. I am on a lot of other meds but not for my heart, mainly for pain and anxiety, plus all the scads of vitamins and supplements while I wait for Myovive to come back out. Jon's note: about 4 more weeks is what I last heard for Myovive's re-release - nothing bulletproof, though
Since I am finally feeling a little better with my fractured ribs, I think Monday will be a good day to just go ahead an call this clinic I found an make an appointment. Thank you Karen, for letting me know you can just go head and make an appointment like that if we don't need referrals. It is just so hard to have to start all over with all new docs, ya know? However, since I don't know where I stand heart-wise anymore due to lack of answers, and tests that never got done, I know it's time to go find out. I guess that is where I start and then go from there to find the other new docs I will need. Ugh! I don't do well having to meet new people let alone docs so this won't be an easy thing for me.
I am trying more and more to understand where and what God is leading me to do. I have Jon to thank for helping me to understand more about how to hold onto my faith. Believe it or not he can sometimes make sense! <g> Thanks again Karen and all of you for your unending support and caring. I have been overwhelmed the last 6 weeks or so with it all. Hugs and prayers always, Ginger.
PS. Karen, your appointments sound quite interesting and I would like to hear how it goes at your next one if you don't mind. email@example.com
Jon's note: According to my wife, I never make sense!
Gail, April 21, 2001 - Hi, I was diagnosed with CHF last August. I'm doing really well now but have a question. Have you noticed changes in vision? I did right away last August and sure enough, my vision had gotten worse. Now I've noticed it's a little better and was wondering if this is a common thing with CHF/high blood pressure patients. My blood pressure is very well-controlled now and I'm doing great. I'm just curious about the vision thing. I'll be checking with my doctor about this but just wanted some feedback from the "experts." ;-)
Thanks so much for this board, Jon. I've learned so much and I do appreciate the time and effort you've put into it. It helps to know I'm not the only one who has gone through or is going through the CHF situation. Gail. Gfernald@earthlink.net
Autumn, April 21, 2001 - Hi Mary Lou, Ruth A, Jon, and all of you out there. I appreciate all the responses concerning neuropathy and neurontin. I have not started any medication yet since I am still hoping for more improvement. It is much better at times but I have much worse neuropathy if I get chilled. My doctors think I probably have a genetic predisposition to neuropothy since my mother had it from B12 deficiency anemia, but when I took Lipitor it brought it on. The doctors say the nerves will probably regrow but it may take months to years. I was told by the neurologist that since I have high blood pressure and cholesterol, and hardening of the arteries, I should still take the statin drugs even though I'd suffer more damage to my nerves but it help me avoid a heart attack.
Personally, I think if I suffered more severe burning and pain in my feet it may make life unbearable. For the time being I need to consider some other drugs to control my cholesterol. As for the hardening of the arteries, I think controlling my stress will go a long way towards slowing that down. I am getting better at that.
Ruthie, I am allergic to the IVP dye too. My doctors say I can have it if I really need testing and would be given high doses of drugs like benadryl during the test. Still, it would be reserved for dire necessity because there is risk. Also, I have a bad back too, and when I had CHF I had a really rough time because I had to sit propped up in bed and it was tough on my back. I now sleep on only 2 pillows. I never thought I'd appreciate such a little thing but I sure do. It is nice to talk with others who are going through this stuff, although I certainly don't wish this on anyone. Take care all, Autumn. AmberDawn-Blzn@webtv.net
Doris R's April 21 reply to Jon's April 20, 2001 - Hi Jon, I have CHF and I use Albuterol a few times a year. What would be an acceptable alternative? Kindness, joy, love, and happiness to you all, Doris R. Roughgoing@aol.com
Jon's note: I wish I knew. I have never researched asthma. Sorry. :-(
Emily, April 21, 2001 - Hi, I was vaguely diagnosed with CM and enlarged heart in January. After a heart cath and EP study, apparently my heart has recovered from 25% EF to 40%. I guess that's good but I still have most of the same symptoms: chest pain, shortness of breath, dizziness, etc,... My cardio doc says that since all my tests seem to be normal, he can't understand why I'm not feeling better. This is going on 8 months now. I am on no meds and have had very little explanation. When I mention cardiomyopathy to the doc he basically says that I don't have that anymore and according to him I am better. I know in my gut that there is something not right with me. Should I continue to pursue this with another doc or was this just a freak event? I need some direction or advice from you all that are further educated than I. Thanks. firstname.lastname@example.org
Jon's April 21 reply to Emily's April 21, 2001 - Hi Emily, You need to see a CHF specialist. This problem is becoming more and more common since the introduction of Coreg - where an internist, PCP, or general cardiologist does not understand that heart failure is extensive and complex, and that improvement in EF by itself means very little. Jon.
Peggy, April 21, 2001 - Hi, I read the posts from Ginger and Emily today and thought they were interesting so thought I would reply to them. Ginger, my husband's cardiologist recommended that we get a second opinion and he would send all the records they would need. I don't understand why your doctor would not be understanding if you want to go seek a second opinion. We have not gone yet to get a second opinion because we feel our doctor is doing the right thing for my husband at this point and he feels great with his DCM and CHF. We do not have a CHF clinic close by at all so until any problems arise we are going to hang tight. Also, we have discussed with my husband's cardiologist that if at any time his EF went up or heart size went down if the doc would take him off any medications. The doc told us that no matter what, my husband would always be on the meds he is on now for the rest of his life; probably at lower doses though.
Emily, I think you need to be on some medications and do what Jon suggested. Ginger, hang in there with your faith. I'm having the same problem right now but it can't hurt at all to have faith in God! I think someday we will see why this is happening. RyoungAngora4683@aol.com
Karen K's April 21 reply to Ginger's April 21, 2001 - Hello Again, First I'll respond to you, Ginger. I managed to get the number for the heart failure clinic off the University of Iowa's web site. I initially spoke with a nurse (the one I now talk with during my appointments) who said I should send all cardiac-related records for the doctor to review and they would then schedule an appointment. I got my call back within about a week. Good luck on your search.
I believe my insurance company is looking at me as a liability. I've been going for counseling over the past 6 years and have to have all visits preauthorized. They have always approved 10 visits at a time but this time, although my therapist asked for 10, I was only given 3. I think it's time for me to contact the EAP provider and talk with them. They don't see people long-term and if you're on medication they refer you to a psychiatrist. My family practice doctor has always prescribed my "mind altering" drugs. Ya see Ginger, I have anxiety problems too, although they have much improved. When I go to "talk" I call it a "tune-up."
Emily, when I was first diagnosed with CHF my EF was 19%. It then improved to 42% and dropped to 38%. It is now in the range of 33% but as we all know, there are variables when the testing is done. From what I understand, a MUGA is more accurate but an echocardiogram is good for checking heart valves. I guess what I'm trying to say is - and it's only me talking here, not a doctor - 40% is not what a normal EF should be. From what I've been told, 55% is considered the low end of normal. I believe I would at a minimum get another opinion.
As I've said earlier, I'm well compensated for whatever reason and having them decrease my Lasix to only Monday, Wednesday, and Friday is of concern. At least I know that I can call the CHF clinic nurse at any time since I have her pager number and she will respond to any problems I might have. If I'm really lucky, there won't be any.
Jon, your comment regarding sodium was interesting. You say the consumption of lack of consumption doesn't effect your sodium blood level but rather this is affected by liquid consumption. If my blood sodium level is low, is this indicative of my needing to drink more fluids? I am so paranoid about retaining fluids that I often avoid drinking something even when I'm thirsty and I don't drink 2 liters a day even with all of the coffee I drink in the morning. I may just write a note to Dr. Silver asking if he would mind discussing this issue. It could also be of interest to others.
We have our grandchildren for the night and tomorrow morning so guess we need to think about dinner. I have to be honest and say I rarely am actually hungry. I could snack on cookies and ice cream and I really enjoy my breakfast but the rest of the day I often eat only because I know I'm supposed to. Karen. email@example.com
Jon's April 21 reply to Karen K's April 21, 2001 - Hi Karen, I don't know. This is an issue I haven't researched. I only know what I said earlier because it came up a long time ago and I asked a CHF doc about it. There is an interesting short section in Dr. Silver's book as I recall about water intake. If you don't have the book, let me know and I'll post a paragraph or two since I now have OCR software for my scanner. :-) Jon.
Autumn's April 21 reply to Doris R's April 21, 2001 - Hi Doris, Over the past few years I have been prescribed Albuterol several times but each time I quit after just a few treatments because it makes my heart feel so bad; Yet if my lungs stay constricted I develop bronchitis. My doctors say I really need to avoid any more damage to my lungs. One doctor gave me a suggestion that has really helped. He has me use one of those apparatus that patients use after anesthesia to help get their lungs going - the apparatus with the blue tube to take a deep breath from, the yellow ball that rises in the clear chamber, and the numbers showing how deeply you breathed.
The doctor said he wanted me to use this thing rather than doing deep breathing on my own because the apparatus lets me know when I'm at my limit but on my own I could overdo and create more problems. When my lungs are constricted I use that a few times a day and in 1 to 4 days the constriction lifts. I have only gotten bronchitis once in the last 4 or 5 years and have not gotton any further scarring of the lungs. For someone with worse asthma, they may not be able to take that long to get relief but I hope this suggestion helps you or someone else as much as it has helped me. I also use a warm, wet towel over my face to try to improve my lung function, and I stay away from strong chemical smells, perfumes and such when I'm susceptible. Best wishes in finding what works best for you. Autumn. AmberDawn-Blzn@webtv.net
Jon, April 23, 2001 - Hi everyone, Please use a real first name and a last initial when posting. I am having trouble keeping all the people here straight without that last initial to help. Thanks, Jon.
Ruth, April 23, 2001 - Hi, I am a 60 year old female diagnosed in January by my family physician with CHF. I have had unexplained angina for more than 30 years treated with nitrates, and hypertension for 4 years. I am currently on 25mg Coreg, Lasix and K-Dur, Lotrel, and 1.75mg synthroid.
My family doctor sent me to a cardiologist for a second opinion since I did not lose fluid as he thought I should. The appointment in my opinion was a waste of my time and I won't be going back to him but back to my family doctor. Reading this site he has ordered the necessary tests and seems in line with what is supposed to be done. I guess my questions are about still not feeling good and motivation to exercise as advised. I continue to be somewhat short of breath and tired with chest pains, some pain in my left arm and hand. When I get myself out the door I can walk for 30 minutes without a real problem but am not able to get around places like the grocery store without feeling very weak and short of breath, and wondering if I can make it home.
Talking to my doctor, he upped my Coreg and thought that would help but so far it hasn't helped my trips to the store. Is this something others experience and what causes it? Does anyone else feel as though all this can just be in one's head and not the heart, even though you know differently? ;-) I live in a rather remote area of central Oregon and do not know of CHF specialist near. firstname.lastname@example.org
Ginger's April 23 reply to Emily's April 21, 2001 - Hiya Emily, Not to be the bearer of bad news but how can your doc say you're fine and have nothing wrong just because your EF went up to 40%? That is not a normal EF. Having an enlarged heart is not normal. I cannot belive you're not on even an ACE inhibitor for preventive measures, at least even if he thinks your CM is gone. If I were you I would be looking for a second opinion. It is not normal to have the symptoms you have if you're fine and cured either. I just wanted you to think about that. Please consider going for another opinion.
Hey ya'll, I am finally starting to feel a little better and can even get up and do a little bit so there is a light at the end of this tunnel after all. Life doesn't seem so bleak anymore. Thank you for everything, ya'll. Jon, your Healthology thing is way cool. I cannot believe the things you find to do for this site to keep improving it. Stay well, ya'll. Hugs and prayers, Ginger. email@example.com
Ginger's April 23 reply to Peggy's April 21, 2001 - Hiya Peggy, It's an ego thing I think with some docs that you have been with for a long time, and all of a sudden want to go get another opinion. I could be wrong and he wouldn't care. He was my second opinion in the very beginning of my DCM. I only care what he thinks at this point because he is the only doc I have. Since he is, I am sort of at his mercy because all my meds for everything right now come from him, but like I mentioned I intend to change all that by starting to find new docs this week. I have no choice because I do need a PCP now anyhow. I have already requested medical records from my back doc for when I find a new one. I will need records from a few docs. I know the new docs can get them himself but it's easier and less time consumming if I have them to take with me for my first visit. When I left my first cardio doc to go get a second opinion I had to go back to the first one and see him one day for something and he flat out asked me why I went for a second opinion. It was a little awkward to tell him him I didn't trust him or like him. <g> So I just want to avoid another scene like that possibly happening. I am trying to keep my life a little more simple and stress-free these days. Hugs an prayers, Ginger. firstname.lastname@example.org
Jon's April 23 reply to Ginger's April 23, 2001 - Hi Ginger, When it comes to telling doctor number one why you want a second opinion, tell him the truth but phrase it carefully and I think it will go more easily. Explain that your health is in a sense your life, and that you just think that such an important part of your life is too important to leave to any one man, no matter how skilled he is or how much you trust him.
Phrase it that way and you're not saying that you trust him or that he is skilled but you're giving him an out for his ego as well as telling him the truth about your attitude. ;-) Jon.
Vee A, April 23, 2001 - Hi, Does anyone know if the milligrams of potassium in food are pretty equivalent to those in potassium supplements? Would less by absorbed from food? I'm on kind of a do-it-yourself sliding scale if I need to up my Lasix on some days, so I'm trying to figure out how to do it if I'm eating lots of fruits and vegetables. In other words, if 20mEq K-Dur is 1500mg K+ (that's what it says on the bottle), do I get about the same amount of potassium if I eat, say, 10 apricots at 145mg K or 2/3 yam at 2341? Sorry, I know this sounds like a dopey school math problem. ;-) email@example.com
Sharon P's April 23 reply to Stephanie's April 16, 2001 - Hi, We visit my husband's family twice a year for 2 weeks each time and meals can be difficult. Once they finally figured out I was serious about my low sodium meals, they really did try but the results were disastrous. My daughter-in-law, a nurse, purchased a processed turkey breast so I would have something other than ham; not much help. I thought I was getting somewhere with my mother-in-law when she announced that she did not salt the soup beans, however there was a very large ham bone floating in it. So now I just cook my own food and yes, it sometimes hurts their feelings but I don't care. It's my life I'm fighting for. Blessings, Sharon. firstname.lastname@example.org
Roz, April 23, 2001 - Dear Jon and fellow CHFers, It was a dark and stormy night, muggy, with sleep eluding this old woman. Remembering the mention MUGA at my last doctor's visit and needing diversion, I groggily turned to the ever-useful procedures site, clicked on MUGA to refresh my memory and the horror began.
I urge all of you, if at 3:30 in the morning you need a good laugh (and who doesn't?), read this crazy essay, noting the inclusion of the word SCAM before you decide never to go near a hospital again. Thanks, Jon, I needed that.
Incidentally, and seriously this time, what is your reaction to the "new" ultrafast CT heart scan to detect calcium levels in the coronary arteries? Insurance won't cover it and it is a bit costly. Thanks for any input. I hope everyone is having a good day. Love, Roz. RWarriston@aol.com
Jon's April 23 reply to Roz' April 23, 2001 - Hi Roz, You're welcome. ;-) Well, while I am all for non-invasive tests, some of the newer ones use such involved software that I remain undecided about their reliability. Coronary artery disease is pretty complicated and I am not up to date enough on its diagnosis to really say how valuable this particular test is. I devote almost all my "research" to heart failure directly, not to all the underlying causes, although I pick up a lot about them along the way. Sorry, Jon.
Jan's April 23 reply to Emily's April 21, 2001 - Hi Emily, Please listen to everyone and especially to your body, and get a second opinion. I also had been told a few years ago that I was fine after a cath and a few other tests. I went on to get pregnant and ended up with what all of us share, plus a dangerous arrhythmia. Get second, third, as many opinions as it takes to satisfy you that your needs are being met. No one doctor can know everything. They're only human, although at times I have called them much worse!
I have 2 questions for the forum. Where and how can I get a simple form for advanced directives and living will without consulting a lawyer? How does one go about finding the right doctor quickly?
It seems to take about 3 months to get an appointment with a new doctor. At this rate, I'll be too sick to care by the time I find a doctor who can deal with someone that has a brain! Is there a process by which one can "interview" a doctor without having to have a formal appointment and send records and all that stuff?
Thanks to all. By the way, my chest pains are getting much less frequent as my Coreg dose goes up. There's a study on a drug for angina in CHFers happening right now or maybe just completed, so have hope those of you with angina! Serenity to all, Jan. email@example.com
Jon's April 23 reply to Jan's April 23, 2001 - Hi Jan and everyone, I don't have a good method for finding new doctors but I do have a few comments, as usual. ;-) First, if it takes 3 months to get a first appointment, don't bother - try a different new doc. I spent an average of about 3 days between first calling and my first actual appointment on my last doctor search roughly 16 months ago. That gap between the first call and first appointment may indicate the usual wait when calling for a visit to that doctor.
Second, you do not need your records to interview a doctor. I told them upfront on the phone that I was looking for a new doctor and wanted to talk to the doctor before seeking treatment for anything. This way, they knew it was an interview and were ready to just sit down and talk with me.
That's what we did, talk. Then the doctor I chose asked me to submit to a full physical exam then and there, and proceeded to do a good job of it. I'm still not happy with him but that's because he is an internist who treats CHFers and isn't as up to speed on CHF as my CHF doc (naturally), so I'm gonna have to go looking again. I don't want a PCP who isn't in step with my heart doctor. I'd rather have a PCP who doesn't know jack about CHF, and I'll just run any meds he prescribes past my CHF doc before taking them. I didn't know enough to ask about that last time - I do this time. <g>
I would love to hear suggestions from anyone about doctor shopping. It's a miserable process no matter how often you've done it and suggestions are very welcome! Jon.
Julie's April 23 reply to Gail's April 21, 2001 - Hi Gail, I noticed a difference in my vision for about 2 months after being put on meds too, but then it straightened out. If yours doesn't, I would recommend that you contact your eye care provider and tell him what meds you are on. God bless and good luck to you, Julie. firstname.lastname@example.org
Marsha H's April 23 reply to Jan's April 23, 2001 - Hi Jan, Some office supply stores carry fill-in-the-blank forms for various legal needs. However, even if you choose to use one of them, they may not be legally binding in your state and that could end up being a big problem. My home state has a specified format that must be followed precisely in order for them to be considered binding. The local radio talk show host/consumer advocate suggested recently that we used the "canned" forms we find in the stores and then pay a lawyer to proof them for us. If he finds little or no fault with the forms, it's a relatively cheap visit but well worth the cost. email@example.com
Marsha H, April 23, 2001 - Hi, This is just a friendly warning about medical records: get personal copies every so often from your doc and be sure to get copies of everything when you leave a doc. I first had PPCM/CHF in 1971 and got my records moved to a new doc when we left the state, but when we moved again, the second doc didn't send the first doc's records but did not tell me so. He said later that he could not send anything he did not generate. The third doc didn't mention that he didn't get the records but it was really too late because the original records had been destroyed after 7 years. This all came back to haunt me because I had about 25 years of no heart problems, then was back to a class 4 in a matter of weeks - in yet another state - and had no detailed history to provide my current docs.
A second issue to raise is that there are a good number of medical people who say that a good GP is the way to go until you hit age 40 or get a serious illness like CHF but when either of those criteria are met, it's time to have an internal medicine specialist as your PCP. It took getting to an internal med specialist to get my diagnosis. Two GPs and an ER guy totally missed that I was already a class 4 dilated CM/CHF with rhythm problems and a 2+ MVP to boot. I stayed that way for about 6 months after being placed on meds. I got better for a couple of years then had a relapse, got better, and have had a recent relapse. I think that a good doc and a bunch of knowledge and support and positive attitude accompanied by prayer are all essentials for any quality of life with CHF. Thanks again Jon, for all that you contribute to so many lives. firstname.lastname@example.org
Jon's April 23 reply to Marsha H's April 23, 2001 - Hi Marsha, Doctors and institutions are not required to send you any records that other doctors or institutions sent them about you, only what they did in fact generate. I don't know that it's against the law but I do know they are not required to include such older/other records. This means that to have a complete personal medical record, you have to request records from every medical center, ER, doctor and surgeon you have ever been to, and hope they still have your records. So I think your suggestion is a vey good one - to periodically request records from each provider.
I disagree with the internist theory myself. I had an internist of 10 years association misdiagnose my CHF and almost kill me with unnecessary surgery. He stood toe to toe with the ER doc who did correctly diagnose me and argued that my enlarged heart on x-ray had nothing to do with CHF. It all depends on the individual doctor in my opinion. I am currently looking for a non-internist to be my PCP for reasons stated earlier. I fully support the use of a CHF specialist for those with heart failure but for general medicine, I personally just want someone who is sharp and has good judgment so he knows when to send me to a specialist. ;-) Jon.
Mary Lou L, April 23, 2001 - Hi Jon and Everyone, I ran across a site while roaming, found it interesting and thought it might be of interest to some of you here at Jon's Place: www.clinicaltrials.gov/ct/gui/c/w1r?JServSessionIdzone_ct=rkx9j8xr41. Mary Lou. MLBinks@aol.com
Jon's note: See the Links page for more
Stephanie M's April 23 reply to Ruth's April 23, 2001 - Hi, I have the same experience of being able to walk for 30 minutes, yet having trouble in stores and malls. I have no idea why. I always question myself too about whether or not this is in my head. I guess I'm not any help but just want you to know that you are not alone. Stephanie. email@example.com
Jon's April 23 reply to Stephanie M's's April 23, 2001 - Hi, Is it possible that you are doing quite a bit of standing in those malls and stores rather than steady walking? Walking uses a natural bodily mechanism in the heels that helps the heart pump blood from the legs into the trunk. Standing is very difficult for me - much more so than walking. Just a thought, Jon.
Joshua T, April 23, 2001 - Hi, Does anyone have any problems with edema when on Coreg? I've been on it for about a month and a half, and since then my ankles are swelling. I would appreciate some feedback on this if possible. Thanks! Joshua. firstname.lastname@example.org
Karen P's April 24 reply to Jan's April 23, 2001 - Hi Jan, I recall picking up forms for advanced directives at our local hospital; they were available at the front information desk for the asking. After completing them, my husband and I kept the originals and sent copies to all our doctors. Karen P. email@example.com
Russ B, April 24, 2001 - Hi Jon, I came across your site about 4 months ago, and it's great. After reading all these posts I would like to know why everyone thinks Coreg is the greatest. I do not mean to sound sarcastic but what makes Coreg better than other ACE inhibitors? I am currently taking 8mg Mavic daily, along with 12 other drugs. I would like your help with this so when I go to the heart doc on May 9, I can talk to her about it without being a complete idiot. Thanks, Russ. firstname.lastname@example.org
Jon's April 24 reply to Russ B's April 24, 2001 - Hi Russ, Thanks. :-) Coreg is a beta-blocker, so it is not related to ACE inhibitors. Give my Coreg page a read and also the beta-blocker overview page, and see if you still have questions. Jon.
Herbert L's April 24 reply to Jack's April 20, 2001 - Hi Jack and all you sushi lovers out there, There are several styles of sushi. Nigety (that's how it's pronounced) sushi has vinegared rice with usually raw sea food on top. Maki Sushi is rolled sushi and can have just about anything in it (sometimes it is rolled with seaweed on the outside, sometimes not). Tec-ka Maki Sushi is the same style but smaller rolls. Chi-la-shi Sushi is sushi that has usually seafood on a bed of vinegared rice. There is a California-style Sushi and it is seaweed with the vinegared rice spread on it and then whatever you like on that. Then it is rolled in a horn style. All but the last style is Japanese. I think you should come to southern Oregon and we will eat sushi. email@example.com
Betty T, April 24, 2001 - Hi, I have dilated cardiomyopathy. I was diagnosed 2 years ago last February. My ejection fraction is low to mid 20s. I also have hypothroidism and I take synthroid. My TSH level was 0.13 a year ago in February. My family doctor said that was okay. Then last February it was 0.08 and my family dcotor seemed to think that was okay. I am going for a second opinion. From what I've read, that is too low.
I'm wondering if that had anything to do with my EF not getting any better. In fact, it was a little lower than the year before. I do take Coreg, plus other medication and the supplement CoQ10. I walk a mile every day. I do not usually have chest pains. I keep busy all the time. I do have to rest from 30 minutes to an hour every day. If I get my rest, I can usually go all day.
Two weeks ago I told my doctor that my pulse rate was usually in the 90s in the morning before I take my Coreg so he lowered my synthroid med. Now, 2½ months later, my TSH level is 0.21. He says that is okay. I think that is still too low. Does anyone also have hypothroidism and if so, did your EF get better? firstname.lastname@example.org
Claire E, April 24, 2001 - Greetings to all, I hope you are all having a good heart day. It's tough in the spring because the mind says go, go, go, but the body can't keep up. I find that anger, upset, and stress have a super-negative effect on my condition. I have to rest after a traumatic mental event too, Jon. I never made the ACE/beta-blocker stress hormone connection, wow! That makes so much sense! Thanks for an explanation to something I have long observed but could never figure out.
I finally got my Disability! I cannot possibly express the joy and relief. I got it retroactive to October of 1998 for myself and my 2 girls. We went on a very necessary shopping spree and it was actually hard to spend money after being so broke for so long. Our bed frame had collapsed and the mattress was so bad so we splurged on a new one. I know a lot of you can relate. I have to say that I learned some very valuable lessons during these lean years and I will always remain ultra-frugal but it sure feels good to have a new pair of sneakers and to buy my Eggbeaters again, not to mention having a little nest egg and paying off some debts! Maybe now I will be a little less stressed and eat a few less nitros. Try to stay well all. Peace and love, Claire E. email@example.com
Sid K, April 24, 2001 - Dear HF Friends, I have a bit of a dilemma here. Perhaps someone else has had a similar experience and found the answers I seek. I have been on 10mg daily of Altace (ACE inhibitor) for a few months now. These are very expensive capsules and I would not like to have to keep buying them. Most of what I have taken have been samples from my GP and from the Cleveland Clinic. Now I am running out of samples and must soon pay the big bucks it takes to get my prescription filled. To keep drug costs down, I submitted to an examination at the Veteran's Administration Clinic. The doctor couldn't supply the Altace I was taking but he proceeded to write and fill a prescription for Fosinopril NA 20mg tablets, at a cost of $2 total for a month's supply. When I showed the drug to my cardiologist at the Cleveland Clinic he said that I should remain on Altace and not take fosinopril.
Is there anyone out there who can tell me the difference between these two ACE inhibitors and why I should not take fosinopril, even though I can get all that I need at a very low cost? Many thanks and blessings to all. SKleiner@aol.com
Pam A, April 24, 2001 - Hi Jon, What happened to the chat room? Is it still going on or have the dates changed? There is never anyone there when I visit. Also, does anyone else use oxygen all or part of the time? If so, please let me know if you think it is addictive or has any side effects. Thanks for any input. firstname.lastname@example.org
Jon's April 24 reply to Pam A's April 24, 2001 - Hi Pam, I am never at chats so I honestly don't know. Whoever is at chats please let me know ASAP if I need to change the dates and times listed on the chat page. Thanks, Jon.
Mike J, April 24, 2001 - Hi everyone, I went last week and had a chest x-ray and all of my blood work done at my request. I just felt the need since it had been almost 7 months since my last work-up. Everything came back fine and when I talked to my internist he asked me why I had it done. I told him that I thought I needed it every 6 months or sooner. He told me that since I was stable that he only needed a full work-up every year but that he did want to check my potassium every six months unless I felt very tired or had any other problems.
The reason for this post is to let everyone know that every doctor is different and if you have a good one stay there and if you don't, find another one. My cardiologist relies on my internist and has not ordered any blood work in the 2 years I have seen him. Of course, my internist sends him all the blood work that I do have done so I guess it isn't necessary.
It's been 4 weeks since I got off Coreg and I really feel better than before. The reason I got on it was that my cardiologist wanted to see how I tolerated it. Well, the answer was not well, so that's why I am off it. It doesn't seem like 2 years since I had the virus get a hold of me but it has been and I only hope that bad boy never shows up again. I hope everyone is doing well and God bless all of you. email@example.com
Jon's April 24 reply to Mike J's April 24, 2001 - Hi Mike, I agree that being comfortable with one's doctor is very important and you are certainly right that doctors are different. However, all my doctors and all the doctors I have contacted agree that once every 90 days is the standard for doing blood work on a CHFer. I have a page on this type of testing under construction at www.chfpatients.com/tests/routine_tests.htm. Please don't get into the page too deeply since I only started it yesterday and is only about 1/4 done. The page has a lot of confusing formatting and data on it right now, and many tests listed that are not routine. I will sort that out later. Even the parts that look done aren't!
I just want to say that my internist (who currently does my blood work) was surprised when I asked him how often it should be done. I asked him if he would be doing it at the same intervals as my previous doctor and he said that he couldn't imagine doctors being different in this respect. He does blood work on me every 90 days. Then again, like you say, different doctors and all. I haven't time right now to see if it is listed in Dr. Silver's book. If anyone sees it there, let us know! For what it's worth, Jon.
Sharon P's April 24 reply to Jan's April 23, 2001 - Hi, I recently received a newsletter from MedicAlert (the medical ID bracelet folks) about a new service they provide for storing your Advance Directive. The service provides storage, family notification service, 24 hour access, physician notification service and a review process to help ensure completeness. The cost is $20 per year. Their web address is www.medicalert.org/ or call toll-free 800-763-3428. A few years ago while a trustee for my aunt, her directive was lost with all the various hospital moves. Had my mother and I not been there with copies in hand, she would have been needlessly put on life support. It is an important paper to have. Blessings, Sharon. firstname.lastname@example.org
Ellita A, April 25, 2001 - Hi, I live in a very big state and I was given this web site address by my transplant coordinator. I have read the messages and I am a little confused about whether everyone has had a heart transplant or if they are on the list for one. I became sick in January of 2000 and have been in and out of the hospital lots of times for CHF since. Today I met with the transplant coordinator and I have a cath this week. A final decision will be made whether if I will be put on the list for a new heart. I am also wondering if anyone is taking the drug Tikosyn? Thanks. LeeAwatha@aol.com
Ira M, April 25, 2001 - Greetings y'all, heart disease has been my constant companion for 35 years. I'm 45. It started with Rheumatic Fever, then the domino effect began, with aortic valve replacement 4 times, the usual cardiomyopathy including ventricular tachycardia and now heart failure with an EF of 26%. My cardiologist told me that I was a perfect candidate for a transplant and sent me to an electrophysiologist, who has treated my VT for the last 13 years, with drug therapy only, with a yearly walk-in cardioversion. He implanted a pacemaker/defibrillator and stated that I was not a transplant candidate because of the many heart surgeries that I have had; scar tissue or some such.
Well, I probably have not asked these doctors the question in the right way or my research is faulty but I cannot find a written-in-stone answer to the question, "Why do the past heart surgeries keep me from being a transplant candidate?" I have found some information about increased antibodies after heart surgery but I just cannot find a definitive answer. If any of you know the answer or can steer my research in the right direction, please let me know. I told my cardiologist about this site so that he could tell the others - who when told that they have heart failure and look at him with that blinded-by-the-headlight look - where they can go to find layman's answers. Thanks! email@example.com
Gino's April 25 reply to Sid K's April 24, 2001 - Hi Sid, The problem may be in the "equivalent" dose between 2 different drugs of the same class. 10 mg of Ramipril should be equivalent to 40 mg of Fosinopril. Fosinopril has not been studied as extensively in CHF treatment as Altace to date. Furthermore, Altace now is very "trendy" among cardiologists due to the results of the HOPE trial being announced recently.
However, as you know, in both USA and European guidelines for CHF treatment, ACE inhibitors provide a "class" benefit, meaning that all drugs of their class provide benefit to heart failure patients, regardless of differences from one ACE inhibitor to the next.
I do not know why this cardiologist has said this but I believe that this switch from one drug to the other is possible. The most important thing is that you regularly take an appropriate dose of an ACE inhibito! Talk to your doctor and if he is a good doctor, you should be able to resolve this problem together. Gino. Jon's note: I am withholding Gino's e-mail address
Mike J's April 25 reply to Jon's April 24, 2001 - Hi Jon, I agree with you 100%. Both of my doctors never really mention that CHF word to me and I don't want a false sense of feeling that my life will always be the same as before. Both do however think that I am doing great and am stable. They seem to believe that I will remain that way for a long, long time and maybe I will but then again maybe I won't.
They are both wonderful doctors who do a complete check on me every time I see them so maybe I wasn't completely accurate in my statement. I saw my cardiologist in August and then this last January. I saw my internist in September and then again 6 months later in March. I will see the cardiologist again in June and have another physical in November. As you can see, I am seeing one or the other every 3 months because i see each one every 6 months and that's the way it rotates. After thinking long and hard I am only having blood work twice a year, which I will demand be changed just to keep my mind at ease if nothing else.
Thanks again and like you, I know that Christ will be with me every step of the way. Thanks again for your info, Jon. Have a great day, Mike J. firstname.lastname@example.org
Jon's April 25 reply to Mike J's April 25, 2001 - Hiya Mike, It sounds to me like you have it under control. I wish I could find a PCP whom I could trust as much as I trust my CHF odc. It really is important to have confidence in your doc, isn't it? Jon.
Rieale, April 25, 2001 - Hi there, It has been quite awhile since I've posted but I always read. In case you forgot me, I'm a 23 year old with idiopathic dilated cardiomyopathy and CHF. I was diagnosed a year and 3 months ago. I just wanted to share my good news with all of you.
Six months ago I was implanted in the InSync Biventricular Pacing study (MIRACLE). Anyway, it has been for me. Last Wednesday I went to Cleveland Clinic for the 6 month testing/unblinding and much to my delight my pacing has been on for the last 6 months. Here are my echocardiography results from 6 months ago:
Conclusions are class 2-3 CHF with severe LV enlargement with severe overall LV systolic dysfunction, EF = 11%, restriction of posterior mitral valve leaflet with moderate central mitral regurgitation, mild RV systolic dysfunction. After 6 months with the pacemaker and on CHF meds, the last echo report says:
Conclusions are class one CHF with mildly dilated LV with mild LV systolic dysfunction, EF = 45%, normal RV systolic function, upper normal left and right atrium size, trivial mitral regurgitation. In addition, my Vo2max went from 14.5% six months ago to 22% now! Let's just say that my doctors are thrilled and the people from Medtronic are thrilled. Don't get me wrong, I know this may not mean anything for the future, but at the moment I feel wonderful so I consider my ICD trial experience very much a success at this stage in the game. My research nurse says that at Cleveland Clinic, their data is definitely encouraging. I just wanted to share my good news with everyone and if anyone has any questions please feel free to e-mail me. God bless. Rieale@aol.com
Jon's April 25 reply to Rieale's April 25, 2001 - Hi Rieale, It's great to hear that you are improving! :-) I am wondering if the researchers did an EKG before accepting you into the trial. If so, do you know what your QRS duration was? I know that best benefit from this type pacer therapy for CHF is supposed to occur in people with a maximum QRS duration of 155ms. I think that's why only 25% of CHFers are expected to be "eligible" for this type therapy - if your heart's chambers aren't unsynchronized, synchronizing them isn't going to help. <g>. I sure hope that the qualifying 25% all benefit this much, though! Jon.
Jerald, April 25, 2001 - Hi, I am an 80 year old male with CHF for 11 years, who just returned from the hospital where I got rid of 20 pounds of fluid with IV Lasix. What I want to know is if in using Lasix or other diuretics it has caused me to itch severely. For 3 months my dermatologist has not been able to determine why I itch. It was more intense when I was receiving IV Lasix but I've been on furosemide for a long time. Jerald D. email@example.com
Sid K's April 25 reply to Gino's April 25, 2001 - Hi Gino! Thanks for some sensible, logical advice. I happen to have an appointment with my PCP tomorrow afternoon. I am going to go over this matter with him at that time. I dislike spending at least $60 monthly for a drug that I can obtain from the VA for just $2 per month. Were it not for samples and the Veteran's Administration, I'd be on the road to bankruptcy at this very moment. I met the detail lady who sells Coreg in this area and she got my doctor to sign a permission slip so she could give me a complete month's supply of Coreg at no charge. She advised me to call the doctor when I need another month's supply delivered to his office! I am to be examined by a VA specialist next week. It will be interesting to see if he agrees with the Cleveland Clinic and the PCP about my treatment program. It's a real jungle out there in Medicine-Land, believe me! Thanks for the valuable input. Good health to you and yours, Sid. SKleiner@aol.com
Retta, April 26, 2001 - Hi, I need help. I was diagnosed with CHF by a pulmonary doc when I was on vacation last October. When I got home my card said I didn't have it. She said I can take up to 40mg Lasix a day. If I don't take them every day I get swelling in my ankles and feet. Lately my feet have about killed me. they hurt so badly. I have shortness of breath that is worse when I have the swelling.
She says she cannot understand why I have the swelling or the shortness of breath. She recently did an echo and said one of my left chambers was slightly enlarged but nothing to worry about. Does this sound like CHF and should I see a CHF specialist? firstname.lastname@example.org
Jon's April 26 reply to Retta's April 26, 2001 - Hi Retta, I don't know if this is CHF or not but it certainly sounds like it. Regardless, you need to get diagnosed and treated to prevent damage to your heart or lungs. I would say that you do need to see a CHF specialist either to make the diagnosis or rule it out and get you on your way to a different specialist! Jon.
Retta, April 26, 2001 - Hi, Does anyone know of a good CHF doc in the Baltimore, Maryland area? email@example.com
Walter K, April 26, 2001 - Hi, About 6 weeks ago my CHF specialist raised my Toprol XL (metoprolol) dosage to 100mg daily. Since then I have been very fatigued. I know this is a common reaction to beta-blockers but have always thought one adjusted after awhile. However, a Drug Infonet FAQ that I just read says "Fatigue will last as long as you are on the medicine (Toprol)." Can anyone tell me from experience whether Toprol fatigue does or does not go away with time? My CHF doc's nurse (the doc is out of town) says it will but it may take months. firstname.lastname@example.org
Tracey C, April 26, 2001 - Hi everyone, I saw my doctor today. He has officially taken me off all meds except the ACE inhibitor. My EF is 56% and holding. I'm a bit nervous about stopping Coreg and Lanoxin, expecially cold turkey, although I'm only on 6.25mg twice a day of Coreg and 0.25mg of Lanoxin). We'll see how it goes. He basically said I have low normal function and some areas of abnormal wall movement, but essentially a normal heart. That's it. Take care, everyone. Tracey. email@example.com
Jack D's April 27 reply to Tracey C's April 26, 2001 - Hey Tracey, My EF went up about 18 months ago and my doc took me off everything except my ACE inhibitor, Zestril. It was nice to quit the stuff. I laid off the ACE inhibitor the last two days but a visit to the doc showed my pressure went up from 110/70 to 170/110 so I went back to it. If you have problems he should put you back on the other stuff. But hey - enjoy! firstname.lastname@example.org
Jennifer Kitchin, April 27, 2001 - Hello, I work with Strickman-Ripps Casting and Research in New York City. We are casting a television commercial for PHRMA (an organization of pharmaceutical companies) and are looking for men and women aged 50 and over who suffer from congestive heart failure. The commercial is a testimonial written around the person's actual story. We will be conducting interviews in New York next week and were wondering if you might know of some people who would be interested. If so, have them call us at (212) 966-3211. They would, of course, be paid for the commercial if they were chosen. Thanks. email@example.com
Valerie D, April 28, 2001 - Hi, I am a 32 year old who found out a month ago I have cardiomypothy, which the doc believes to have been caused by a virus. While I have read Dr. Silverman's book, Success With Heart Failure, I still have so many questions, and it has helped to read how everyone deals with this disease.
I also have CHF and find the hardest struggle is my diet. I have 2 children (ages 6 and 2) and am trying to keep up with them. My husband is very supportive but my EF is 30% according to my cardiologist. I have now increased my Toprol to 100mg per day in hopes of strengthen the heart.
I find it very encouraging to see that it is true that patients have seen improvement in their heart. My main question is, "Did your docs tell you to walk?" My cardiologist has told me I need to walk and that makes me very nervous. Valerie. firstname.lastname@example.org
Ruth P, April 28, 2001 - Hi, I am sad to report that my dear husband Ron died on April 18th. He had extensive pulmonary fibrosis plus an undiagnosed lung inflammation/infection. Some of you may remember when I first came to this forum over 4 years ago and he was in the hospital getting a double bypass, a new valve, and an angioplasty. At that time he also had lung problems. He had a hard struggle for every breath for the 7 weeks he was in the hospital this time and he died peacefully, never having lost his faith in the Lord's plan for him.
The day before he died I received the news that my EF has gone up to 60% from 25%. He was aware of this and gave me the circle thumb to index finger. He had always worried about and supported me so it was wonderful that I could give him this news. I am sure the Lord gave me this miracle so that I was able to go visit him daily in the hospital. We always thought I would be the one to go first - from CHF - but you just never can plan the end of your story, can you?
I am sure that he is in a better place and that we will meet again one day. I ask for your prayers to give me strength to get on with my life as best I can. Ruth. email@example.com
Wendy B, April 28, 2001 - Hi everyone, I have a question about exercise. I feel like I'm sitting here getting flabbier and flabbier, and I know I can't take an aerobics class - all that jumping up and down would have me on the floor in the first 5 minutes, but what about yoga? My doctor says that it's okay with him (I'm class one CHF) but I'm wondering whether anyone else has had any experience with it. It seems to me that the deep breathing might either be a problem or a help. Has anyone out there tried it with CHF? firstname.lastname@example.org
Stephanie's April 28 reply to Ruth P's April 28, 2001 - Dear Ruth, I am so sorry for your loss. You are in my thoughts and prayers. Your faith is a real inspiration to me, as well as the faith of your dear husband who never doubted the Lord's plan for his life. Thank you so much for sharing with us. May God bless. Love in Christ, Stephanie. email@example.com
David, April 28, 2001 - Hi, I live in the New Port Richey/Tampa area of Florida and desperately need a CHF doctor. I had an aortic valve replaced due to rheumatic fever as a child. I got a staph infection during surgery and have had my valve replaced twice more. The last surgery required deep sutures in the heart which affected the electrical currents in my heart. They had me on so many medications that I became toxic, my kidneys shut down, and I died 3 times in emergency. My surgeon said my heart is healthy and strong but now I have CHF. My current dose of Lasix is 320mg daily. I think my body is becoming immune to diuretics but don't know what to do. I also have gout now from the medication. I need help in finding a doctor who is knowledgable. Thanks for any sugestions, Dave. firstname.lastname@example.org
Mary Lou L's April 28 reply to Ruth P's April 28, 2001 - Dear Ruth, Please accept my sympathy for the loss of your husband Ron. Be assured that he is with the Lord and as you said, in a better place. I will keep both of you in my prayers and will certainly add a special prayer that He will watch over you and guide you. May God bless you always, Mary Lou Latini. MLBinks@aol.com
Hope M's April 30 reply to Walter K's April 26, 2001 - Hi, I take 50mg Toprol per day. I found that if I take it in a single dose, it makes me very tired but if I break it in half (it is scored) and take 25 mg in the morning and 25 mg at night, I can take it without as much fatigue. Maybe if you try taking 100mg Toprol in two 50mg doses, you'll be less tired. I know it is supposed to be a time-release formula but it does seem to me that it has the most fatiguing effects starting about 2 hours after I take it and lasting for about 2 or 3 hours. email@example.com
Jerry's April 30 reply to Claudia's April 28, 2001 - Hi Claudia, Thanks for the info that loss of fluid by dialysis could cause severe itching. Mine may be from something other than diuretics but it is 4:30 AM and each morning I am driven out of bed itching all over. It stays with me all day until I finally get to sleep at night. Cool soda baths haven't helped, nor has anything else. firstname.lastname@example.org
Jon's note: Does benadryl help (antihistamine)?
Joe S, April 30, 2001 - Hi, Talking about exercise, I just bought the house I'm living in and lost my gardener in the process. I've been feeling so good I went out and mowed the huge lawn, trimmed weeds, etc,..., and have been feeling rotten ever since. Does anyone have any ideas on what our limitations really are? Why would walking behind a power mower hurt? I don't have CHF anymore but do have a leaky valve and mild diabetes. Joe S. email@example.com
Lisa E, April 30, 2001 - Hi Jon, I was diagnosed with cardiomyopathy and CHF 3 months ago. I was wondering if you are still taking the Myovive supplement and where can you buy it. My problem is that my blood pressure already runs low so my doctor has me on a low dose of an ACE inhibitor. I take 2.5mg Altace twice a day and digoxin (Lanoxin) at this time. Do you have any suggestions or do you know other patients who have had low blood pressure? Thanks again for the site. Your site and Ginger's site have been wonderful. Thank you again and God bless you, Lisa. Johnlisa@the-i.net
Jon's April 30 reply to Lisa E's April 30, 2001 - Hi Lisa, As far as I know, Myovive should be back out in about 2 weeks, available through their web site. My contact at Nutricia moved on and I don't have any special info on the product at this time. Sorry. Jon.
Tracey C's April 30 reply to Wendy B's April 28, 2001 - Hi Wendy, My mom and I both have DCM. She has taught yoga for 25 years and has an EF of 25%. She teaches 8 classes a week and says it's what has kept her strong and given her the opportunity to remain off meds. Trust me, I wish she'd go on medication but she's very homeopathic and refuses. Still, I have to give it to her that she is stable, and yoga seems to definitely help her. Her cardiologist now refers people to her class and she's in the process of having a yoga for heart patients video produced. Again, the doctors say she's really an exception to the rule but I would ask your doctor, you never know. I should note that I've never taken one of her classes or any yoga class for that matter. I'm just not that coordinated. Take care, Tracey. firstname.lastname@example.org
Marica, April 30, 2001 - Hi, I am looking for a CHF specialist in London, Otario or anywhere near to us in Canada for my 82 year old mother who lives with us. She was diagnosed with heart failure about 5-6 years ago. She takes Vasotec, digoxin, spironolactone (Aldactone), Lasix and at her last hospital visit a week ago she was put on Coreg. My next appointment with a heart doctor is August 1. I would appreciate your help. Marica. email@example.com
Walter K, April 30, 2001 - Hi, On April 26 I posted a request for people's experiences with Toprol and fatigue. So far I have received 6 replies, all by e-mail. Here is a summary of the responses in case anyone else is interested:
One person switched from Coreg - which was causing problems - to Toprol and has no fatigue at all from the Toprol. One has just switched to Coreg from Toprol and said she was a "little tired" while taking Toprol but that this may have been due to other causes such as being pregnant and taking care of kids. Two people got fatigued by Toprol but got over it after a couple of months. Two others have been on Toprol for 1 to 2 years and are quite fatigued by it and this has not improved with time. So I guess everyone is different, which is no surprise, and/or other meds one is taking may affect one's response to Toprol. firstname.lastname@example.org
Claire E, April 30, 2001 - Hi everyone, I hope all is well. I have a question for anyone who can help. I recently started taking a beginner's yoga class at my local library and I love it! I can't do all the postures and poses but I can do quite a few and am very proud. I find it relaxes me and makes me feel stronger. One of the main philosophies is to honor and respect your body and its limitations. What better way for a CHFer to view it, right? I am a class 2 CHFer and would never even attempt the inverted poses or strenuous ones. Has anyone ever seen or heard of a "yoga for cardiacs" book or tape? I think I heard or read that Dr. Dean Ornish prescribes gentle yoga for some of his patients but I can't find any cardiac-specific info. I would greatly appreciate any info you folks can give. Thanks so much. Peace and love, Claire E. email@example.com
Nadine's April 30 reply to Stephanie's April 28, 2001 - Hi, My husband has DCM and although I don't think he is in heart failure now, we have noticed that he gets extremely tired in malls. The "standing a lot" idea Jon expressed makes sense to me. I just wanted to comment that while I have good health and am a relatively active person, I get extremely exhausted in malls. The air is hot and stuffy, there is a lot of noise pollution, which is mentally tiring too. When I leave a mall to go outside I take a deep breath and enjoy the fresh air! I don't know if USA malls are smoke-free but here in Alberta, Canada, there is very little smoking allowed, and some malls are smoke free. The air in the smoke-free malls is bad too. Just a thought. firstname.lastname@example.org
Autumn A's April 30 reply to Wendy B's April 28, 2001 - Hi Wendy, For myself, my doctors told me they did not want me doing aerobics because the arms are used excessively and often above shoulder height, which is harder on the heart. He wants me doing walking outside or on the treadmill, or using an exercise bike. These exercises use mostly the large muscles of the legs. For the first year after being diagnosed with CHF my doctors had me exercise at 50% of my maximum heart rate. For me personally, that worked out to 117 BPM. Once I was no longer in CHF they told me to exercise at 70% of my maximum heart rate so I now work my heart rate up to 140 BPM as long as I am having a good day. I listen to my body and slow down when I need to. My doctors think it is important for my health to exercise and yoga is okay with them. I find the deep breathing difficult but do think it is beneficial. Listen to your body and even if you need to take it a little slower, you'll be surprized at the benefits you'll reap. Be sure though that you talk to your doctors about what exercises to do and discuss with them what level is right for you. I've been at it a year and a half now and have come to love it most days. I hope you enjoy it too. Autumn. AmberDawn-Blzn@webtv.net
Wendy B, April 30, 2001 - Hi, Thanks to all who replied to my yoga question. I'll check out my local yoga places this week! email@example.com
Molly B, April 30, 2001 - Hi, I love Angel Food Cake. I was very surprised to find out the amount of sodium per serving. Does anyone here have a low sodium Angel Food Cake recipe? If you do, can you please share with me? Thanks a million, Molly B. firstname.lastname@example.org
All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.