The paperwork never ends The Archives
February 16-31, 2000 Archive Index CHFpatients.com

Ginger 2-16     lost all my ICQ info & more
 
Sandi M 2-16     should I worry about EF? & more
 
Bill D's 2-17 reply to Sandi M's 2-16     EF variations
 
Phyllis A's 2-17 reply to Carol's 2-15     CHF pacemaker news story
 
Joyce 2-17     update, questions about sleeping & more
 
Rieale's's 2-17 reply to Sandi's 2-16     EF checkup questions
 
Doris R 2-17     what is a healthy EF?
 
Jon's 2-17 reply to Doris R's 2-17     healthy EF range
 
Renee M 2-17     questions - diabetics & chest pains
 
Barbara King 2-17     heart cath questions & more
 
Jon's 2-17 reply to Barbara King's 2-17     heart cath
 
Maggie S' reply to Joyce's 2-16     recovering from the flu
 
Mary 2-18     seek CHF doc in Houston
 
John P 2-18     glad to find you
 
Jon 2-18     end of pooter story, thank you all
 
Edgar 2-18     intro, some CHF questions
 
Jon's 2-18 reply to Edgar's 2-18     be sure to read The Manual
 
Brian G 2-18     some CHF questions
 
Lonnie 2-18     some EF change questions
 
Nancy 2-19     bruising problem - any ideas?
 
Jerry 2-19     why potassium & magnesium?
 
Pat D's 2-19 reply to Mary's 2-18     doctors in your part of Texas
 
Ginger 2-19     pine bark extract & to Lynn D
 
Jon's 2-19 reply to Ginger's 2-19     pine bark extract or pycnogenol
 
Karen E's 2-19 reply to Nancy's 2-19     bruising and meds
 
Jean C's 2-19 reply to Jerry's 2-19     potassium & magnesium, diet questions
 
Jons' 2-19 reply to Jean C's 2-19     diet, feeling good & more
 
John Len's 2-19 reply to Jon's 2-18     is non-profit a good way to go?
 
Jon's 2-19 reply to John Len's 2-19     nope
 
Bill D's 2-19 reply to Nancy's 2-19     have you had any blood thinners?
 
Bill D's 2-19 reply to Jerry's 2-19     electrolytes, CHF info & more
 
Susie O 2-20     strange drunk-like symptoms
 
Jeanette 2-20     have serious pain - doctor not listening
 
Jon's 2-20 reply to Jeanette's 2-20     just my opinion
 
Don M 2-20     just want to talk to non-doctors
 
Doug K's 2-20 reply to Susie O's 2-20     weird or "minor" symptoms, update & more
 
Ben B 2-20     are saline IVs ok for CHFers?
 
Chakradhar V 2-20     intro, would like further advice
 
Jan B's 2-20 reply to Jeanette's 2-20     neck noise & ear aches from injuries
 
Jack's 2-21 reply to Jeanette's 2-20     antidepressants & pain
 
Bill D's 2-21 reply to Don M's 2-20     welcome! coping with CHF
 
Ruthie A 2-21     update - not so good, Imdur questions, prayer request
 
Joe S 2-21     aching arms, poor walks lately - questions
 
Frank S' 2-21 reply to Jack's 2-21     drugs can always be dangerous
 
Kathy 2-21     update, transplant questions
 
Dan 2-21     aortic valve replacement questions
 
Barbara P J 2-21     update on Joy & a prayer request
 
Jeanette's 2-21 reply to Jack's 2-21     was on Effexor for depression
 
Bill D's 2-21 reply to Dan's 2-21     valve replacement choices & info
 
Luc D 2-22     update & more
 
Don J 2-22     sleep & meds questions
 
Art's 2-22 reply to Ruthie A's 2-21     hey Ruthie, we're pulling for ya!
 
Brian G's 2-23 reply to Dan's 2-21     personal heart valve experience
 
Rick M's 2-23 reply to Don J's 2-22     coping with CHF & feeling better
 
Freddie B 2-23     update, anticipation & to Ginger & Joy
 
Jeanette W's 2-23 reply to Ruthie A's 2-21     Imdur & more
 
Phyllis A 2-23     ejection fractions versus symptoms
 
Billie Jo C 2-23     questions about finances, & down the road
 
Roberta 2-23     Coreg questions, fatigue questions
 
Debbie L 2-23     DCM versus CHF question
 
Robin Reed 2-24     update & thanks
 
Brian G's 2-24 reply to Roberta's 2-23     starting Coreg
 
Donna Z's 2-24 reply to Roberta's 2-23     coping with Coreg
 
Bill D's 2-25 reply to Billie Jo C's 2-23     SSD info, lawyers & more
 
Sandi M 2-25     cramps questions
 
Ruthie A's 2-25 reply to Jeanette W's 2-23     need current e-mail address
 
Donna Z's 2-25 reply to Sandi M's 2-25     back & side pains
 
Joe S' 2-25 reply to Robin's 2-24     doctors & breathing difficulties
 
Joy S 2-25     environment & heart disease question
 
Susie O 2-25     update - good news
 
Frank S' 2-25 reply to Sandi M's 2-25     muscle pain & cramping questions
 
Judy S' 2-25 reply to Sandi M's 2-25     tonic water & muscle cramps
 
Harriet P 2-25     dizziness, fainting questions & more
 
Robin 2-25     herbal diuretics
 
Jon's 2-25 reply to Robin's 2-25     herbal diuretics
 
Bill D's 2-25 reply to Joy R's 2-25     environment & heart disease
 
Jon's 2-25 reply to Sandi M's 2-23     muscle cramps
 
Gaile 2-26     switched to Zebeta, weight control questions & more
 
Donna Z's 2-26 reply to Joy R's 2-25     environmental concerns, herb use
 
Don J 2-26     chronic sleepiness questions
 
Robin R's 2-26 reply to Harriet P's 2-25     low blood pressure questions & more
 
Jon's 2-26 reply to Robin R's 2-26     low blood pressure possibility
 
Robin R's 2-26 reply to Jon's 2-25     miss the chats
 
Jon's 2-26 reply to Robin R's 2-26     need everybody to read this, please
 
Robin R's 2-26 reply to Jon's 2-25     herbs are natural
 
Jon's 2-26 reply to Robin R's 2-26     here we go again
 
Claudia 2-26     muscle cramps possibility
 
Frank S' 2-26 reply to Jon's 2-26     will your doc really do that? & how?
 
Jon's 2-26 reply to Frank S' 2-26     medical librarians are one key
 
Ben B's 2-26 reply to Claudia's 2-26     I couldn't agree more
 
Ben B's 2-26 reply to Joy's 2-25     lots of people with CHF
 
Rieale's' 2-26 reply to Donna Z's 2-25     cramping type pains
 
Bev T 2-26     Coreg & blood sugar questions
 
Jon's 2-26 reply to Bev T's 2-26     Coreg & blood sugar
 
Jon 2-26     oops!
 
Thelma's 2-27 reply to Gaile's 2-26     Zebeta
 
Donna Z's 2-27 reply to Bev T's 2-26     Coreg and blood sugar
 
Donna Z's 2-27 reply to Ben B's 2-26     I disagree
 
Joe S' 2-27 reply to Ben B's 2-26     watching diet may help
 
Cindy M's 2-27 reply to Gaile's 2-26     losing weight, weight-loss drugs
 
Al H's 2-27 reply to Robin R's 2-26     low blood pressure & fainting
 
Missy 2-28     feeling much better & more
 
Victoria 2-28     prayer request - my mom died
 
Billie Jo C's 2-28 reply to Bill D's 2-25     seek Seattle SSD lawyer, questions
 
Carol W 2-28     Imdur & insomnia
 
Richard 2-29     update
 
Bill D's 2-29 reply to Billie Jo C's 2-28     SSD attorneys
 
Ruthie A's 2-29 reply to Carol W's 2-28     Imdur, insomnia, & some questions
 
Al H's 2-29 reply to Billie Jo C's 2-28     SSD attorneys
 
Robin R 2-28     finding the cause for our different symptoms
 
Connie R 2-28     echo testing & more
 
Doug K's 2-29 reply to Victoria's 2-28     coping with the grief


Ginger, February 16, 2000 - Hi, Thanks for the answers on the exercise question. When ya put them together they come out about the same. Now for the fun part: My hard drive crashed and of course it was not backed up. So those of you who were on my Icq list or I am on yours, and you're not listed on our Icq page, please e-mail me your icq number or send an Icq request. Thanks. Stay well ya'll and computer willing, I will see ya's at chat. Hugs, Ginger. mystery@laker.net


Sandi M, February 16, 2000 - Hi all, I am a little confused (nothing new). In May of 1999, I had a heart attack and was diagnosed with CHF. At that time my EF was 13%. Then in July, it was 25%. Now it is 21%. I feel better now than I did in July. Will my EF ever go up? I know some of you have gone up to 40%. I tried Coreg but had rashes, breathing problems, vertigo, and tremors. They said I could not take it. I am on Coumadin, Lasix, Zaroxolyn, digoxin, Accupril, Norvasc, Lopressor, K-Dur, Lipitor and Premarin. My CHF specialist is great about trying different meds or adjusting them and he is very careful of my blood work. Does anyone have any suggestions? Is my EF important or am I worried for nothing? Even my exercise time has improved since July. Well, I hope everyone has a good day. Sandi. chefal@bellsouth.net


Bill D's February 17 reply to Sandi M's February 16, 2000 - Hi Sandi, Don't worry about your EF. It's how well you feel that counts! I felt better when my EF was 17 than I do now at 37. Most of us think our EFs go up and down like our blood pressure. <g> Bill D. billdog@gate.net


Phyllis A's February 17 reply to Carol's February 15, 2000 - Hi Carol, I also heard it on the news and mentioned it to my husband, but all I heard was that the pacemaker was for CHFers and would be ready after approval from FDA. phylcasurv@msn.com


Joyce, February 17, 2000 - Hi Jon and everyone, Boy did I miss this site! I was down with the flu so badly it put me in the hospital for a few days. I'm glad to be back. I'm just wondering how long the after effects will be. Does anyone have any ideas? I'm glad to be back online and sorry that I did not get to answer any of the great e-mails that were sent to me about not sleeping through the night, but now you know why I did not answer. I still have problems sleeping at night. Any answers? Joyce. mjcarter4@hotmail.com


Rieale's February 17 reply to Sandi's February 16, 2000 - Hi, Like Sandi, I am confused about EF levels, too. I was just diagnosed with cardiomyopathy and CHF last month with an EF of 15%. I am wondering when most of you have been rechecked for your EF levels. Do they check it every 6 months or is it like everything else with CHF, and individually based? The doctors have told me that if I am going to regain heart function, it will probably happen within a year of being on the drugs (Coreg, Aldactone, Lasix, Accupril, Lanoxin, K-dur and Coumadin). Luckily, I haven't had any reactions other than a dry mouth and a little dizziness, but hey I was a dizz before I knew I had CHF. I'm just curious when most of you have been rechecked. Rieale@aol.com


Doris R, February 17, 2000 - Hello Jon and everyone at The Beat, It's been several months since my last post. I don't post as often as I read. I have DCM and CHF. My EF went from 10% to 30% after 6 months of Coreg at 25mg twice a day. I am due for another sonogram in May and I have a question. What is the EF of a normal or, so called healthy heart? Thank you in advance for the answer. I will pray for you all and please all of you, pray for me; If not total recovery, at least to endure. Hi Heather, I miss you. Love, Doris R. RoughGoing@AOL.COM


Jon's February 17 reply to Doris R's February 17, 2000 - Hi Doris, My CHF doctor considers 55% and above normal, while some other very competent CHF specialists I know consider 50% and above normal. Occasionally, I see 60% and above listed as the normal range. Take your pick. <g> Jon.


Renee M, February 17, 2000 - Hi everyone, I have had a really bad week. I need some help from any diabetics out there. Have any of you experienced chest pain when your blood sugar is elevated? If so, how high does your sugar get before you have pain? Do you know why?
     I have had this happen to me twice and the pain doesn't go away without nitro. Both times, the pain lasted for over a week. My highest sugar levels have been around 140. My chest x-ray and stress tests were ok both times. If I get my sugar down to around 100, the chest pain goes away. This happened about a year ago and that's when I found out I was diabetic. As soon as I got on meds and adjusted my diet, the chest pain went away and has not come back until now. My doctor doesn't seem to think they're connected, but I can't help but think they are. I have not found any other reason for this chest pain. I very rarely have chest pain, even when I am really fatigued or short of breath. If anyone has any experience with this, please let me know. Thanks. Renee M. Auntonay@prodigy.net


Barbara King, February 17, 2000 - Hi, I just returned from my cardologist and he says I have cardiomyopathy. He is doing a heart cath on Wednesday, February 23, and according to what he sees, he may do balloon angioplasty in my arteries or as he says, "Roto-rooter" them, maybe even stents. If he finds nothing, he said the right medicines might control my symptoms. He says I could have had a viral infection in my heart or this could all be caused from my Rheumatic Fever when I was a child. This is all very scary to me and depressing.
     How dangerous is this procedure? Is there anything they are not telling me? I would appreciate any information on this procedure. Barking@aol.com


Jon's February 17 reply to Barbara King's February 17, 2000 - Hi Barbara, Have you looked through my Site Index? There's a section on CHF tests that includes a fair description of the heart cath procedure. Give it a read and then ask all the questions you still have. Jon.


Maggie's February 17 reply to Joyce's February 16, 2000 - Hi Joyce and everyone, I came down with the flu on New Year's Eve. It really hit fast. I was really sick the first 2 weeks and it took another 2 weeks or more to regain what strength I have, back. I had a routine visit with my PCP and she said it could take up to 8 weeks to feel better, especially when you have CHF. I ended up on an antiobiotic for a sinus infection, but am still having problems with that. I hope you feel better soon. Maggie S. marjac@pro-ns.net


Mary, February 18, 2000 - Hi, Can anyone recommend a doctor that is good with cardiomyopathy in Houston, Texas? I have a regular cardiologist doctor but would like to see someone else. Thank you. maryt1@worldnet.att.net


John P, February 18, 2000 - Hi, I'm 56 and have CHF along with cardiomiopathy. My EF was 17% and I worked hard to bring it up to 52%. I took an early retirement, but try to stay moderately active 2-3 hours a day. It seems to be stabilized, but I'll know more after my next echo in 3 weeks. It's nice to read about all of you, that I'm not alone. jvpitlik@newnorth.net


Jon, February 18, 2000 - Hi all, Thanks to your help, I finally got a decent pooter ordered instead of continuing to repair pooters right and left. With a 3 year warranty on this sucker, I should be okay now. It arrives in 2-3 weeks (I had it built because it's cheaper than buying "ready-made"), so I am crossing my fingers that the current pooter lasts that long. I had no idea it was going to be so expensive and I would never have even dreamed of getting a system that will be faster than I am - like that was so hard <g> - without the donations from everyone here. Thank you and thank you again. When I am actually using the new pooter, I'll be sending individual thanks. Now, if we could just get Uncle Sam out of the $$$ picture - He's killing me! Did you know some online places are charging sales tax now, in addition to shipping? I didn't. (ouch!)
     I would also like to thank Stephan J for his company's financial help, which is what put me over the edge and let me do it right. Thanks, Stephan! Jon.


Edgar, February 18, 2000 - Hi, I am 42. I had a 4-year history of severe chest pains, shortness of breath, high blood pressure, family history of heart disease (Father deceased at 55 from MI and my brother had MI at age 31), and a resting pulse rate of over 100. My doctor gave me a treadmill test and didn't see any problems. He did treat me for acid reflux. I kept seeing him and regularly complaining, but he continued his treatment without change until I ended up in the hospital with an EF of 25 and a complete blockage with 2 more almost as bad. They did open heart surgery and after being left open for an additional 2 hours with a heart pump assisting while the surgeons watched, I have made a good recovery. Afer rehab, my cardioligist did an echo and I have an EF of 30. I am able to do 11 minutes on the treadmill and he feels I am doing great. That is all the doctors will take the time to explain to me. I am told that I am no longer in CHF. I was before surgury. They had to drain my chest, ect,... Can anyone tell me what class I might be in. I take Vasotec and Coreg. Thanks. edgar@amacher.com


Jon's February 18 reply to Edgar's February 18, 2000 - Hi Edgar, That sounds like a wild ride! Take a look at The Manual where you'll find a good explanation of functional heart class and CHF in general. Then pop back here and ask all the questions you can think to ask. Jon.


Brian G, February 18, 2000 - Hi, This site is amazing. It seems that we are all thinking about the same thing, but need someone to ask. OK, any idea why there is such a wide range of EF with no relation to how you feel? I guess this really isn't the case, but Jon says his is up, yet he gets short of breath quickly, while others with low numbers feel pretty good? You get my drift. Oh yes, has anyone tried different brands of ACE inhibitors and had a cough with some and not others? Thanks! BPGruber@yahoo.com


Lonnie, February 18, 2000 - Hi, I am 32 year old with PPCM, CHF, asthma and multiple allergies. After my first heart failure episode and diagnosis, my EF was 13-15%. In August of 1999, an echo showed that my EF was 65%. I had another echo in January and it showed an EF of 50%. The doctor also did a chest x-ray, which showed possible fluid in my lungs, with dilated vessels. Tests showed no apparent heart enlargement. The doctor didn't seem phased by the drop in my EF. He said what I know - that EFs can vary from machine to machine and technologist to technologist. I believe from what I have read that a 15 point difference is too great and I am worried. I have also has some shortness of breath, a rapid heart beat at rest (near constant) and during exercise. He thinks I may have some underlying electrical problem from the initial dilation. I am seriously worried about the apparent fall of 15 points in my EF. Should I be worried, or believe the doctor, who acts nonchalant as if 15 isn't a big deal? lmykle@netscape.net


Nancy, February 19, 2000 - Hi, I've recently experienced severe bruising - black and blue marks from a bump or almost any contact with anything - and wonder if this is just a another side effect of multiple CHF drugs and CHF itself. I take Cozaar and Lanoxin, but use inhaler steroids for asthma. I'm thinking that the asthma meds are probably the cause, but rarely take oral prednisone. Any thoughts would be great. Thanks. nash@southcoast.net


Jerry, February 19, 2000 - Hi, What a great forum! It's nice to know there are a few as confused as I am about how my body should feel after CHF, but it seems like it varies with the individual. Could someone let me know what adding potassium and magnesium offer? Thanx, Jerry. jerry@pcisys.net


Pat D's February 19 reply to Mary's February 18, 2000 - Hi Mary, I also live in the Houston area. After bad experiences with a couple of cardiologists, I'm now seeing a doctor at the Baylor Heart Clinic, who is also the head of their transplant team, with a speciality in Congestive Heart Failure. His name is Dr. Guillermo Torre and I'm impressed with his knowledge and thoroughness. Whether he treats cardiomyopathy without CHF or not, I don't know, but there are several doctors in the practice, so you could call and inquire. The phone number for the clinic is 713-798-7857. If you'd like more information, please e-mail me at patj98@yahoo.com. Pat.


Ginger, February 19, 2000 - Hiya's, I would like to know if any of you are taking pine bark extract. To Lynn Daniels, before I could answer your e-mail, my computer crashed so if you would resend me your e-mail address I would like to reply to it. :-) Stay well ya'll. Hugs, Ginger. mystery@laker.net


Jon's February 19 reply to Ginger's February 19, 2000 - Hi Ginger, I just wanted to point everyone to this article at Nutrient Stew (recently very much expanded) about pine bark extract and how it thins blood. If you take a blood thinner or daily aspririn, please consult your doctor before taking pine bark extract or "pycnogenol." Jon.


Karen E's February 19 reply to Nancy's February 19, 2000 - Hi Nancy, You said you were on a multitude of CHF drugs but you didn't mention if a blood thinner like warfarin (Coumadin) or even an enteric aspirin was included. Easy bruising has one common cause in the blood being too thin. If you are on one of these types of medications, call your doctor and report it, and schedule a PT (pro-thrombin time or INR), test. This will let you know if your blood is too thin. Love in Christ, Karen. kedge@ispchannel.com


Jean C's February 19 reply to Jerry's February 19, 2000 - Hi Jerry, There is some great information on this site about meds, but I do know that for me, a diuretic (furosemide) permits me to breathe without drowning. It also depletes my potassium to the point where I get leg cramps so severely I can't sleep nor walk. I take K-dur (potassium) twice a day and also eat a banana once a day and do pretty well. If I skip any of this for 24 hours, I can feel it. How's that for instant reaction? Personally, I don't know much about magnesium but am such a walking laboratory that it's probably in there somewhere.
     Jon, I'm sure glad that you are getting a new computer that is built to your specifications. This site has been a wealth of information and support for us all. Where else can we ask all these questions and not feel like we're imposing? I am having a little puzzle. I got to feeling pretty low physically and mentally, was hungry all the time, and just gave up on the diet and ate anything I wanted. I got a tremendous burst of energy this week and have been able to do a lot more things. Is it possible that the low, low sodium and cholesterol diet are not all that great for us? I was so weary of not being able to do as much or as fast as I was used to. Has anybody else gone through this same thing? Is it just another phase? ojean@oz.sunflower.org


Jon's February 19 reply to Jean C's February 19, 2000 - Howdy-doo Jean, I'd say you just discovered two new things about CHF control. Number one is that attitude counts! Because you felt like you had broken some of your illness "chains" by cheating on your diet, you believed you were behaving more normally so you felt more relaxed and normal. We all need to beware falling into the "I'm too sick to be happy, I'm too sick to feel good" attitude trap. Feeling good is partly physical and partly a choice. If we make the choice to be happy and feel good, we are far more likely to be happy and feel good. This ain't just talk. See this article.
     Number two is that your blood pressure probably went up considerably, and your heart rate increased as a result of the extra sodium. So your heart moved more blood faster, which made you feel more "normal." It's like stopping your beta-blocker - you feel better but that's because your heart is back to wearing itself out trying to move a "normal" amount of blood. Our meds are designed to prevent just that. Why? Because it kills us by quickly wearing out our hearts. It's a balancing act. Your diet is fighting your meds if it contains a lot of sodium.
     It's a balancing act for sure. Each one of us has to decide if feeling "good" for a little while is worth a quicker, more intense deterioration a bit down the road. If not, we must learn how to cheat only once in a while and not severely, which allows us to have brief periods of "normalcy" without chucking the whole program and basically killing ourselves.
     By the way, I do not believe in low-cholesterol diets. I have seen no convincing evidence that dietary cholesterol has anything to do with clogged arteries. Fat in the diet is okay with me but it should be mostly monounsaturated fats like olive oil rather than polyunsaturated fats or saturated fats. You see, polyunsaturated fat is a ploy. Once inside your body, these fats bind to other molecules and become saturated fats anyway! Monounsaturated fats do not, and may in fact contribute to a healthy heart, as in the Mediterranean diet. There is an article about how high-carbohydrate diets failed the healthy test at Nutrient Stew. Jon.


John Len's February 19 reply to Jon's February 18, 2000 - Hi Jon, Can't you get your site certified to a nonprofit status and get a tax exemption for any material or equipment purchased to operate that site? John. a_lenny6@hotmail.com


Jon's February 19 reply to John Len's February 19, 2000 - Hi John, As a former financial secretary for a nonprofit group (Cabinetmakers' Apprenticeship Training Committee for my entire city), I have a different perspective on noprofit organizations. I would need steady income designed to support the nonprofit entity's activities, which this site isn't intended to generate now or ever. I would have to pay a lawyer to set it up, and an accountant to handle my finances year round, which would include quarterly tax filing, rather than once a year. On top of that, if I have enough "tuit" to run a real nonprofit company, I have enough physical ability to work for a living, thus no more Social Security Disability. Once I take a job of any kind outside my trade, I also lose my union health insurance, drug coverage, and disability pension as well, and we all know my chances of getting health insurance anywhere else. So to sum it up, naw, I can't do that. <g>
     I did talk to a tax expert (on the clock - not a freebie) when I got the small grant from Stephan's company that allows me to buy a whole new system and confirmed all the above. The only drawback is that I spent all the donated money on the system and now I have to save to pay the taxes, which is quite a chunk of change. I meant to save back enough for the taxes but wanted to get a system that means no more need to cry help down the road, ever. So it goes,... Jon.


Bill D's February 19 reply to Nancy's February 19, 2000 - Hi Nancy, We all look as if our partners beat us up! The bruises are mostly from blood thinners like aspirin or Coumadin. Did you just get out of the hospital, Nancy? Maybe they gave you a blood thinner named heparin? Bill. billdog@gate.net


Bill D's February 19 reply to Jerry's February 19, 2000 - Hi Jerry, Most of us take slow release potassium if we take Lasix. Lasix is a water pill. It helps us get rid of the water that sodium holds in our tissues. Along with the water, Lasix washes out our potassium and magnesium. They are called our electrolytes and we dearly need 'em! Welcome to Jon's Place. You'll find answers to all the questions your doctors don't have time to answer. Go to the top of this page and Click Here across from Site Index. You should start by reading The Manual. Then start burrowing into all the information Jon has collected on CHF, the diseases that cause it, what you can do about it, how to evaluate your doctor, how long you'll probably live and interesting stuff like that! Then come back and talk to us. Ok? Bill. billdog@gate.net


Susie O, February 20, 2000 - Hi Jon, I have a question. Twice I have felt almost drunk (dizzy, off balance, thought process not working up to par, speech not right, tongue felt almost like a current running through it, arms and hands felt asleep). The first time I went to the ER from work, where they did all kinds of tests thinking stroke. Nothing showed up wrong. Yesterday I went back to a doctor at a standalone clinic because I'd slipped on ice and injured my shoulder. I've used these muscle relaxants before and have been using the same ones the past few days, but he did prescribe a pain reliever and I used one around noon. I've used both the muscle relaxer and the pain reliever since beginning my heart medicines, so it's not the first time I've used them.
     Anyway, to make a long story shorter, we were at the store last nightabout 7 hours after taking those meds and the same symptoms began again. I was in the same store I'd gotten the prescription filled at, so I went back and talked to the pharmacist. He thought I could be getting the flu and did not think it was the med. From there I went back to see the doctor who said to take half the med and if it still bothered me, call him back.
     Has anyone else had symptoms like this before? The first time I wasn't taking anything other than my normal heart medicines. mrpaco975@aol.com


Jeanette, February 20, 2000 - Hello Jon and everyone at The Beat, I have a serious problem and need your help. As you know, my regular doctor put me on Effexor at 75mg. It was giving me such headaches, confusion and anxiety that he finally decided to take me off it 4 days ago. I am now experiencing and have been for a few weeks now, a sounding in my head, kind of like sandpaper rubbing every time I turn my head. I tried to tell this to my doc weeks ago and he checked my ears and they were ok, but I still feel there is something wrong. The pain in my head and right ear is just too much. Do you think I should tell my cardiologist about this because my other doctor does not seem to be listening? has anyone ever experienced this feeling?
     I am just about in tears over this and don't really know where to turn. If it gets worse this week, I am planning a trip to my local ER. Maybe they will listen. Any feedback would be greatly appreciated. You are all so wonderful and I pray for all of you! Jeanette. jandtuf@aol.com


Jon's February 20 reply to Jeanette's February 20, 2000 - Hi Jeanette, I recommend going to the ER now, and then making an appointment to see an osteopath or even better, a chiropractor, as soon as possible. This sounds like a very real musculo-skeletal problem to me. Having worked in lumber mills for many years and seeing and experiencing many injuries, I can tell you for a fact that MDs are terrible - absolutely terrible - at recognizing and treating problems of the muscle, ligament, tendon, or cartilage variety. Every guy who has worked a really physical job knows what I mean. Most of us have a favorite chiropractor out of necessity, not because we're into alternative treaments! <g>
     Pain means something is wrong. Get it treated by a doctor better versed in this sort of injury or problem - a sports medicine doctor, osteopath, chiropractor, orthopedic surgeon, whatever - but not a regular MD. Please note that with head and neck problems, a good chiropractor will require an x-ray before manipulating your neck. If he doesn't, question him. Also, be sure to tell every doctor you see - for anything - about your heart condition and your meds, as well as any other health problems! Just my opinion, Jon.


Don M, February 20, 2000 - Hi, I am new to this sort of exchange. I have CHF and have had 5 heart attacks over the last 20 years and 2 bypasses. Having just retired, I now realized that while I have problems, others have worse. I just want to talk to people other than doctors. Do I qualify on this site? shaman@sunlink.net


Doug K's February 20 reply to Susie O's February 20, 2000 - Hi all, First I want to speak to Susie's problem of numbness. While nothing necessarily showed up for the doctors so far, keep going to them if you continue to have those symptoms. They could be TIAs, although it certainly may be caused for other reasons. You don't want to play around with them for sure.
     To update you on what has been happening to me: I have DCM, CHF, high blood pressure, glaucoma, LP, GERD and AntiPhospholipid Antibody Syndrome (APS). The APS has caused me to have TIAs since 1998, and since September of 1999, I have been having problems swallowing. I have tested negative for Myasthenia Gravis, and just got the results of Lupus testing the other day. Well, this gets a bit technical, so bear with me.
     My Lupus anticoagulant test was high but because blood testing also showed a prolonged clotting time due to Coumadin, a Lupus diagnosis can't be made. The doc explained that I could try to go off Coumadin for a few months and then get my blood tested again for Lupus. Of course, there is a risk of stroke and pulmonary embolisms so I took a few minutes to think about it. It was my choice. He can't prescribe anything for the lupus till he gets an official diagnosis and he may not get the diagnosis without me being off Coumadin. So I decided to chance it and go off Coumadin.
     So over the next 2 weeks I will cut back on my Coumadin and then once I am off it, I will take aspirin to help keep my blood thin. If the tests show me to still have elevated Lupus antibodies, he will probably put me on meds for Lupus and back on Coumadin as well. So unofficially I probably have Lupus but officially, I will have to wait 4 more months to see.
     Susie, all this started for me with an incident where my hand went numb for 15 minutes, and then my foot went numb for 5 more minutes. I have had many similar incidents over the last couple of years. So anytime anything out of the ordinary occurs, especially numbness, tingling or pain that occurs for no apparent reason, have it checked out by the docs. Sometimes the meds we take can cause these symptoms as well. Sometimes, unfortunately, it also can take a long time to get diagnosed. Lupus happens to be a very hard to diagnose disease. As many of us CHFers know, atrial fibrillation and low heart output also can cause clots to form in the heart, which can then move to the brain. So try not to become paranoid Sue, but don't waste time getting to medical help if those symptoms come back. Best to all of you, and keep your faith in realizing your dreams, and looking foward to tomorrow. dgknuth@earthlink.net
 
Jon's note: LP?


Ben B, February 20, 2000 - Hi, I was just thinking about sodium and hospitalization, and an interesting thought came to my mind. Normally when I have been hospitalized and in need of IV medication, they started me off on a pretty much continuous saline drip, to which they later added medication. I was wondering if this is the same for CHF patients? I haven't been hospitalized since I got CHF (knock on wood). If so, is this normal sodium salt or a different kind of saline solution? How much sodium? I just was curious; it isn't critical. bdbrinkman@juno.com


Chakradhar V, February 20, 2000 - Hi Jon, God be with you always. I am a law graduate and working as a corporate manager in Hyderabad, A.P., India. I am lucky that I survived a cardiac arrest on 11-20-98 at Guntur, Andhra Pradesh, India. I was born on 8-10-66. I do not have any family history of CAD and I am a complete vegetarian. However, I am an ex-smoker (smoked 10 cigarettes a day for 13 years) and was pegging as a socialite. For about 2 years between August of 1996 to November of 1998, I was undergoing a stressful life as a corporate manager.
     I had an angioplasty with stent on 12-3-98 and was out of the hospital on 12-10-98. By God's grace, up until now, I have had no further health troubles. I use to suffer from severe allergy during winters and only recently I got it checked and the diagnosis turned out to be Rhinitis. I walk for 30-45 minutes every day in the morning. The meds advised by my cardiologist are:
Morning, after breakfast - Becosules, Enam (Enalapril) 2.5mg, Dilzem (Diltiazem) 30mg
Afternoon, after lunch - Ecosprin (Aspirin) 150mg, Dilzem 30mg
Evening/Nights - Enam 2.5mg, Dilzem 30mg, Storvas (Simvostatin)10mg
     Last September, I had a dobutamine stress echo test and the THR is 87%. My echo confirmed my EF to be above 40%. Let me know what further health precautions and periodic checks I should undergo to give more to my wife and 2 kids, who are boys aged 6 and one year old respectively. I would like to be part of your mailing list on updates you may give for people sailing in similar boat. Thanks for the beautiful thoughts and efforts to serve mankind. Chakradhar V. vchakradhar@pol.net.in


Jana B's February 20 reply to Jeanette's February 20, 2000 - Hi Jeanette, I was injured in a car wreck in 1990, and since then I often get a sandpaper rubbing sound from the old neck injury. I find it usually happens when I have slept on it wrong and I also get the earache on that side. It goes away eventually but can be so annoying while it it there. Jana B. JByers4u@aol.com


Jack's February 21 reply to Jeanette's February 20, 2000 - Hi Jeanette, Jon gave you good advice about going to a different kind of doctor but there's another bit of advice you also need. When a doc decides to prescribe something for you, find out what the medication is for. Effexor is an anti-depressant and it seems he was giving it to you for pain. This stupidity is becoming common practice. I've had anti-depressants prescribed for pain too. I guess the idea behind it is if the get you loopy with an anti-depressant, you won't care if there is pain.
     It just demonstrates how low the medical profession is sinking. Anti-depressants are dangerous drugs and they are throwing them around like candy, just like they did with antibiotics. Look what a disaster they have created with that one. If your doctor doesn't know what they are really for, then ask your pharmacist. A pharmacist actually knows something about drugs. Your doctor is only parroting something that was told to him by the drug salesman. maddjak@hotmail.com
 
Jon's note: Regarding antibiotics, I think Jack is talking about this (let it load)


Bill D's February 21 reply to Don M's February 20, 2000 - Dear Don, If you go back and get 6 more bypasses and 30 or 40 more angioplasties with stents, you'll be the most qualified patient ever to visit this site! <g> (That means I'm grinning as I say that!) Welcome to Jon's Place! We're glad to have you aboard our leaky old boat. <g> Keep bailing! The more we learn about CHF, the longer we can live with it. The best place to learn is right here. Click on Click Here across from Site Index at the top of this page. You might start your education by reading The Manual. Bill D. billdog@gate.net


Ruthie A, February 21, 2000 - Hi everyone, Like several of you, I have been run over by the proverbial flu truck only to have it back up and run over me again! Fluid restrictions have made it very difficult to manage the symptoms and I have been miserable for longer than I can remember. I hope those of you who have not gotten the flu will remain that way.
     Among the myriad of meds in my daily mix, I take a large quantity of Isordil to relieve chest pain. Lately I have been experiencing breakthrough pain, so my doc has taken me off the Isordil and is putting me on 120mg of Imdur daily. Does anyone use it? Do you find it effective? Does anyone have any side effects from it such as bad headaches or anything like that?
     I also have received discouraging news from my CHF doc. My stamina has dropped to the point where I can no longer exercise or do my favorite thing - sing. I suffer from intense fatigue hangover and once went into a bad failure episode with such an effort. My doctor said that I will probably never be able to exercise again. Because of it, my weight will be a constant issue as I will not be able to take any excess weight off. So my diet is now more rigid than ever while some of my favorite activities are also gone. What am I supposed to do, sit on the sofa and watch Oprah all day long?
     In the meantime, hubby is kind of disturbed because he sees the deterioration of my quality of life and is reminded that life is very short and very precious. He is also very angry at God. Please keep him in your prayers. Ruthie A. rlaba@mindspring.com


Joe S, February 21, 2000 - Hi, I have a question for anyone. I have a small business I run off the Internet. The other day I had to wire about 10 light fixtures, meaning cutting and pinching wires to make a connection, and my upper arms have been achey ever since. Is there a connection with CHF here? Also, I cannot finish my 2 mile walk without stopping 2-3 times for a minute, lately. Jack, I like your comment on doctors. I had hives once and they gave me so much benadril I almost passed out. I sure didn't care about the hives though. Joe S. jes@stevensonlighting.com


Frank S' February 21 reply to Jack's February 21, 2000 - Hello all, Many doctors use very poor judgement when prescribing drugs, so we must be informed about the drugs we are told to take. I must take exception to Jack's comment that drugs, and in particular anti-depressant drugs, are dangerous. All drugs, if not prescribed and used properly, can create problems. Frank. marquasmith@mailcity.com


Kathy, February 21, 2000 - Hi to everyone at Jon's Place, I have been reading all the posts for about 6 months. This is the best site for all of us to get our information. Jon does a wonderful job getting all the important facts out to us. I especially liked the transplant info as I've just been put on the list as of Friday.
     I have CHF, IDCM, LBBB and MVP with an ejection fraction of 15%. I've been diagnosed since April of 1997, but lately have been feeling so very tired and worn out. I've been on the transplant evaluation road for the last 2-3 weeks and it's been tough! It seems like I have a long road to go, but it sure helps to tune in to Jon's Place and talk to others in the same boat. I'd love to hear from others who have been down the transplant road and see how they handled it. Thanks to all for their inspiration and hope; it keeps me going. KathynPete@compuserve.com


Dan, February 21, 2000 - Hi, I have read all the posts looking for information on aortic valve replacement. I have a choice of either a mechanical or pig (porcine) replacement. I am 55 years old and am active hunting and doing carpenter work. I have been a non-smoker for 10 months. I have gained 20 lbs since I quit smoking. The talk I hear about the mechanical valve scares me. On the other hand, the pig valve is not supposed to last. Why is that so? Is it lifestyle, or not enough data on longevity of the pig valve? I have to go in for surgury on February 29 and would sure like some feedback. All the drugs the mechanical valve require is scary business at best. Thanks, Dan. DanBrandX@aol.com


Barbara P J, February 21, 2000 - Hi, I just got back from seeing Joy today. She is at Shands Hospital in Gainesville, Florida. As we were leaving, they were preparing to move her to a monitored room. As Joy stated, "ICU or CCU, cause the machine wasn't showing what they wanted." Through all this, Joy was still smiling! Her hubby seems so very nice and supportive, and we all know how important that is. Joy plans on being back home Thursday but may not feel like joining our chat. She did not request but I am, prayers for this very wonderful and yes, mostly upbeat, person. bpjohns@accessatc.net


Jeanette's February 21 reply to Jack's February 21, 2000 - Hi Jack, I was not put on Effexor for pain. I was diagnosed as clinically depressed and he is trying to find a drug that works for me. Zoloft didn't touch my depression and Effexor's side effects were too strong for me. Jeanette. jandtuf@aol.com


Bill D's February 21 reply to Dan Brand X's February 21, 2000 - Hi Dan, As I understand it, the old pig valves leaked after awhile. They would get out of round and the leafs wouldn't quite close. Now they sew a titanium ring in the base to keep them round. Did you get the manufacturer's name of your 2 choices? They probably have a Web site you could visit. My buddy Ned got a mechanical valve about 13 years ago. He could hear it click and he thought he was done for. He talked his wife into a second mortgage so he could buy a BMW 325i before he died. The 325i is long traded but his valve is still clicking along. <g> He's been taking Coumadin all those years and he's used to it. He sends a sample of his blood once a month now and they write back if he needs to adjust it. Get the names and look at the info on their Website. Good luck, Bill D. billdog@gate.net


Luc D, February 22, 2000 - Dear friends, It's the Belgian Luc here again. First, I want to welcome all the new people who come to our heart forum. I hope they can get some advice and friendship from other heart patients like us. I saw my cardiologist on Friday, February 18. They did an EKG, echo and MUGA scan. My left ventricle is getting larger and my ejection fraction is 35%. Before, it was 40%. I also have to go on a diet. I must lose about 6 kg (13 pounds). I don't eat very much but still I go up in weight.
     The cardiologist said I have to try to do more exercise, but that is very hard for me to do. When I try to do more than I can, I get chest pains and shortness of beath. Sometimes I pass out, I'm fainting. My medications are now Lasix, Zestril and verapamil. I use some CoQ10 but I don't really know if this helps me. I will try to do my very best to get some courage and move on with this hard life. I have to go on for all my friends here and my family. I cannot let you all down! All the best from your Belgian friend, Luc and family. luc.deseins@planetinternet.be


Don J, February 22, 2000 - Hi, I started out with a load of fluid in my legs and body, with a diagnosis of CHF, and I felt pretty good and slept all night. Now I have gotten rid of the fluids and am taking all kinds of medication and I feel terrible and don't sleep. My conclusion: I am 75 years old and I think I would rather have all the symptoms, live a little shorter time but be able to enjoy myself. As it it now, I am turning into a slug with all sorts of side effect problems.
     My question is, "Does anyone have any knowledge of whether or not it is possible to control fluids without the use of diuretics?" One less pill would be welcome. I have tried several different sleeping pills and have come to the conclusion that there are no good sleeping pills. I feel that my solution to the problem lies in exercise, relaxation, and the changing of my attitudes about sleep. Exercise and relaxation are easy. It is the changing of attitudes about sleep that is difficult. I am getting discouraged and I figured that this is a good place to vent my frustrations. grumpngray@aol.com


Art's February 22 reply to Ruthie A's February 21, 2000 - Hi Ruthie, Wow, I'm sitting here in the shadows always reading the posts but I do not post much anymore. When I saw your last one, my heart just broke to think you're getting another boot in the butt. If I could only pray your problems away, you know I would. Ruthie, you're a tough gal and something will happen to help you and hubby out. I just know it. I have become a very happy camper, even with my CHF, and I am doing great so you see your prayers helped me and mine. I hope mine will help you and yes, I always remember hubby too. I am enjoying life again and it's wonderful to say that.
     I hope everyone knows its ok to be mad at God. Wow, I don't think anyone could have been any madder than I was and now we're good friends again. Ruthie, I'm going into overdrive with prayers for ya - hang in there kiddo. You just put hubby on this thing anytime he wants to talk and I will be here. You've got my address, I know. Well bye, and everyone, let's say a special prayer for Ruthie! Believe me, she's a dream! Your pal Art. bigdog@usol.com


Brian G's February 23 reply to Dan's February 21, 2000 - Hi, I'm not up to date on the question of pig versus metal valves, but I can share my experience. Twenty-three years ago I opted for a pig valves at age 25. It was great at the time - no blood thinners - but it only lasted 7 years! I know they don't last as long in young people. I've had metal valves since. They have been recalled due to a defect, but I'm not about to have it replaced on the third time around. The cardiologist I see claims over 3 and the risk is very high. It's not worth using my last shot needlessly. For my first time, the doc said they could replace every 10 years, no big thing. That's not the first thing they said that they were wrong about. Anyway, I wouldn't go for something I know isn't going to last. It's personal, but I haven't had any problems with these valves in 17 years or with the blood thinners, praise the Lord. Things improve daily, but 7 years wasn't worth it for me. No one ever mentioned CHF until last year. As an aside, when they did the surgery the first time, the heart was cut from the size of a football to normal. I went into a-fib and remained in it. BPGruber@yahoo.com


Rick M's February 23 reply to Don J's February 22, 2000 - Hi, What I really want to comment on is your attitude toward medical treatment. Sure, you can lie around and sleep well and feel nice and relaxed with all kinds of extra fluid puffing up your body, or you can give your heart a break and live the CHF life. That means that you must restrict your sodium and your fluid intake so that diuretics are a minor problem. I am also 75 years old and since I started on medication, I've reduced my Lasix intake from 80mg per day to 40mg every other day. My weight varies between 203.5 pounds and 205 pounds depending on whether or not it is a Lasix day.
     I have only had one hospital stay since I started my meds, and that was before I understood what low sodium really means. That stay was enough for me. In 2 days, I had 3 roommates, all with CHF fluid problems. One didn't last the first night, and the other 2 had to be taken into ICU - all because of fluid overload. You might feel better for a few days, but you won't be around very long to feel anything. rearadml@iu.net


Freddie B, February 23, 2000 - Hi to everyone, especially those who are having a bad time right now. There seemed to be so many that I decided to join in. Ginger, I know you told me to stay out of the hospital and I did for all of 1999 but I will be going into Duke Medical Center sometime Thursday for at least a 2 week stay. I will be placed on an IV drip of Milrinone to help my very weak heart beat better. If I can tolerate the drug with no adverse side effects, I will be allowed to come home after the 2 weeks. If I do have adverse reactions to the drug, I will stay in the hospital until either the Lord heals my heart, I receive a heart transplant or I get my chance to find out if I make it to Heaven or the other place.
     I will do my best to keep everyone informed on my progress. I plan on keeping a daily journal of events so I can pass on the experience to others. I have a positive attitude about the whole thing because I have for a long time placed my future in the hands of my Lord and Savior Jesus Christ. I will not tell you that I am not scared out of my wits by the thought of the whole process, even with the fact that I have known this day would come some day. I will try to make it to the chat Thursday night but I can't be certain that I will be able to since I don't know what will be going on at that time.
     Joy, your are my hero. Hang in there; you are an inspiration to us all. Take care everyone and may God bless all. Freddie B. fgbatten@attglobal.net


Jeanette W's February 23 reply to Ruthie A's February 21, 2000 - Hi Ruthie, My best friend and ex-roommate had a heart attack in 1998 and was put on Imdur. When she was first taking it, she got mass headaches that could kill a dog! Once her body was used to it, she was better but it took lowering her dosage and taking it in the AM and not at night, because the pain would keep her awake all night and she couldn't function at work the next day. By taking it in the mornings, she could control the pain with Tylenol and at least function like a human. I will give her your e-mail address and she can tell you more about what alternatives you might want to try to help ease your pain. Good grief, you must be some kind of prayer warrior to have the devil making all these waves for you! We're always praying for ya, don't stop believing. God bless. jandtuf@aol.com


Phyllis A, February 23, 2000 - Hello, I hope all is well. Jon, I believe it was you who said that ejection fraction is normal at 50 or 55%. I am around normal then, but most days I don't feel normal, so that is why my cardiologist hardly ever refers to that. I believe that if you have the symptoms of CHF like fatigue, shortness of breath, and fluid retention that puts us all in the same boat. So I agree that if my 50 and you're 20%, I may feel much worse than you. Thanks Jon, for all the info. phylcasurv@msn.com


Billie Jo C, February 23, 2000 - Hi, I'm 29 and was recently diagnosed with DCM and CHF. I would like to thank Jon for this site. It has been very informative and it is reassuring to know so many others are in the same boat. I especially like Kitchen Corner as I don't know how to do any sodium free cooking and was very discouraged that every label I looked at in the grocery store was loaded with sodium.
     I am learning how to re-do my lifestyle to live with this disease and am optimistic to be as good as new, sooner or later. I was diagnosed 12/99 with 10% EF, which went up to 25% three weeks later. I'm still waiting for my third echo in March and am hoping to see big improvement again. My question for anyone here is, "How do you all survive financially?" My doctor forbids me from working. He said my job was too physical. I was a night stocker at Target and don't possess the skills needed for a desk job. Welfare is denied me because they said my husband at $11/hour made too much money for our family of 5. SSI Disability income will take 180 days! Things are getting tough in the here and now. Does anyone have any suggestions? Is there a way to light a fire under SSA?
     Also, how are people feeling who have had DCM for awhile? I've only had it for 3 months and am curious about long-term. My doctor is a very vague, wait and see, type. Is this typical? Well, good luck to all. I'm very new to computers, and hunt and peck typing is giving me a headache so goodbye for now. Sincerely, Billie Jo Conley. billiejoconley@aol.com


Roberta, February 23, 2000 - Hi, I am a 43 year old female recently diagnosed with cardiomyopathy. There is no history of heart disease in my family and this all seemed to happen suddenly. I am now taking accupril and will start taking Coreg, which is a beta-blocker. I have heard horror stories of how it makes you so tired you can barely function. I would like to hear how others on this have done. Also, how do you cope with this constant tired feeling? Thanks! R0berta@aol.com


Debbie L, February 23, 2000 - Hi, It's been awhile since I posted but I read the site daily. My prayers are with all of you who are going through tough times. I go back to my doctor on March 1st and he's going to do some benchmark testing. This will be my ninth month since diagnosis. Do you think I should expect or request anything besides the standard echo and bloodwork? I also have a very basic question that is still not clear to me after all of these months. I know what DCM is and what CHF is, but my question is, "If I have DCM, do I automatically also have CHF, or is that something more to look forward to?" My doctor has never uttered CHF to me and I had to drag DCM out of him. He just seemed to talk about a virus that settled into my heart. Everyone take care. Biloxibud@aol.com


Robin Reed, February 24, 2000 - Hi all, I am home after nearly 2 weeks in the hospital. Nearly dying has had the silver lining of my doctors finally admitting that I don't have asthma and never did, through an open lung biopsy. The lung condition is due to Lupus - big surprise - but the doctors kept indicating that the CHF was from the lung condition and weight problems due to long term steroid use. Thanks to your wonderful site, I was able to argue with them about ejection fraction with enough knowledge to make them listen. I have an appointment with a cardiac specialist at the end of next week. I will impress upon him that the water retention problems started long before the weight and the steroids. They put me on IV Lasix and by the second night in the hospital, I was suffering horrible muscle cramps that they wanted to give me morphine for. I refused and sat with my muscles flexed until the cramps subsided. The next morning I started requesting a banana with my breakfast and I am now on potassium.
     My lung condition is duing very well now that it is being treated with proper medication instead of lots and lots of asthma medication. I am not waiting to see the cardiac doc to change things. I used your info to lower my salt intake way below what my doctor advised: 4 grams daily. I am using your guidelines and recipes daily. Please excuse the length but I wanted you to understand just how much good your site can do. Thank you. I truly believe that had I not found this site, I would not be here tonight. Robin. Grizzelda@webtv.net


Brian G's February 24 reply to Roberta's February 23, 2000 - Hi, Don't worry about the Coreg! It may not be that bad. I've been on it for 3 months and yes, I'm not as good as normal, but I'm really surprised how well I feel. I always hope for 100% in terms of how I feel, but 90 isn't bad. Wait and see. I have been getting more sleep and haven't been exercising as much as I would like but don't worry, you may do just fine and the bright point is most people feel better after they're on it for awhile. Don't push too much and try to stay active. Best wishes and I will pray for you. BPGruber@yahoo.com


Donna Z's February 24 reply to Roberta's February 23, 2000 - Hi, I break up my doses of Coreg, and it seems to be working just fine that way. This is what I do: I started off slowly and my doctor built up the dose until I was at 50 mg per day. I take 12.5mg in the morning, then 12.5mg in the afternoon with lunch and my biggest dose of 25mg at dinner. Please remember to take Coreg with food! I also started taking 150mg CoQ10 150 per day and I feel it has helped with my tiredness. My doctor said she saw no difference in patients taking CoQ10, but that if I wanted to try it she saw no reason not to. Well, I swear it has helped me. Maybe I was getting better anyway but I swear it has helped me. Good luck. dzak@worldnet.att.net


Bill D's February 25 reply to Billie Jo C's February 23, 2000 - Hi Billie, To see what Jon says about SSD, click here. It may be in your best interests to see a lawyer. Maybe he can get around the 180 days rule. Those guys work on 25% of what they get for you, and not a penny more. Did you see where our Jon used to be a cabinetmaker? He taught himself how to put up a Web site when he got CHF. He hasn't stopped talking since. <g> Bill D. billdog@ gate.net
 
Jon's note: Seems to be getting worse with advancing age, too! <lol>


Sandi M, February 25, 2000 - Hi everyone, I haven't posted for awhile thanks to the flu (again). My question today is about leg cramps and the same type of cramping going up my right rib cage. I take K-dur and have not had any increase in my Lasix. I eat 2 bananas a day also. My potassium level was in the normal range. Any ideas? I have just been feeling so lousy lately. I never regained my strength after the last bout with the flu, and so short of breath all the time. The cramps are keeping me up all night, which only adds to my weakness. Come on Jon, you always have an answer, so please speak up. Thanks and God bless everyone. Sandi. chefal@bellsouth.net


Ruthie A's February 25 reply to Jeanette W's February 23, 2000 - Hi Jeanette, I tried to e-mail you and got a note from the AOL postmaster that your address would not receive e-mail from me. Please e-mail me and tell me how I can drop you a note. Thanks. Ruthie A. rlaba@mindspring.com


Donna Z's February 25 reply to Sandi M's February 25, 2000 - Hi Sandi, I also get a sorness on both my sides if I stand or walk too much. I wouldn't call it a cramp; maybe a soreness. When I would move, I would get a real sharp twinge. I asked my doctor about it and she felt it was because of losing muscle tone from being so sick and not exercising enough. Since I've been walking more, it has improved a lot. The doctor did not think it had anything to do with my heart. dzak@worldnet.att.net


Joe S' February 25 reply to Robin's February 24, 2000 - Hi Robin, I sure sympathise with you. When I first went to the docs, telling them I couldn't breathe, they gave me a ton of inhalaters and sent me home. Naturally the inhalers only caused my heart to do weird things and made the situation worse. Methinks they call this giving us a quick kick. They didn't even give me a chest x-ray the first time. Joe S.
 
Jon's note: Joe, Since you are a regular, I posted this but from now on I must receive a proper e-mail address


Joy S, February 25, 2000 - Hi, I'm curious: Is there any relationship between heart disease and your environment? I was diagnosed with CHF and IDCM in February of 1999. I read the posts here almost daily but have only posted once or twice because I feel pretty normal, even though my last echo showed my EF to be 23, up very little since my diagnosis. The lady who sits across from me at work was also diagnosed last year with CHF. We have both been with the same company over 20 years. Quite a few of our co-workers have heart trouble too. I just turned 40 and she is 47. Is there any evidence that this might be the case? enjoy2@yahoo.com


Susie O, February 25, 2000 - Hi everyone, I had a MUGA scan done February 10 and I just talked to my doctor yesterday over the phone. My original results from March of 1999 were 39% and now are up to 47%. He said he'd keep me on my meds since I had done so well on them. I won't actually see him until the end of March but he seemed as pleased as I am with the results. I kept telling him there would be a big improvement and I sincerely believe that attitude makes a big difference in how we feel. I hope everyone is able to enjoy the nice weather we've been having (at least in the northeast). mrpaco975@aol.com


Frank S' February 25 reply to Sandi M's February 25, 2000 - Hi, I hope Sandi's post will open a discussion about muscle cramping or burning. Since I started taking furosemide (Lasix), when I walk just a few hundred yards, I must sit down and let my muscles recover before I move on. Even though I eat an inordinate amount of fruit and I believe my potassium level is ok, there are still the other electrolytes like calcium and magnesium which must also be in balance for our muscles to expand and contract properly. Is the diuretic the culprit or sonething else? Since every body is different, are there many answers? Hopefully some positive posts will help sort out the cramping problem. marquasmith@mailcity.com


Judy S' February 25 reply to Sandi M's February 25, 2000 - Hi, I have a relative who is a doctor (surgeon). He recommended that I try drinking a glass of diet tonic water at bedtime. It has zero calories and about 35mg sodium in 8 oz. It has relieved the cramping in my legs. This is due to the quinine in the tonic water. As Jon says, everyone is different. This has worked for me and maybe it will help you. Love to all the wonderful CHFers out there who try so hard to help each other. Judy S. jstaelens@prodigy.net


Harriet P, February 25, 2000 - Hi everybody, Well, it's been a CHF month for me. My blood pressure has been plunging and I've been fainting all over the place (so embarassing). My cardiologist stoped my Cardizem and I'm just taking Inderal right now. I had a cardiolite stress test Tuesday. I must have lived through it because I haven't heard from them yet on the results. It's just a problem with extreme fatigue, dizziness and breathlessness. I've cut down my fluid intake, but you all know what the feeling is. I'm wondering if the addition of Tricor for cholesterol to my vast array of medications could be the culprit. Is anybody else on that? I also take 1000mg of Niaspan. Seriously, I feel that my stress test must be okay since it has been a few days or they would have called me pronto. I do have substantial damage to my heart. Does anyone have any ideas? God bless each and everyone of you. hprince1@bellsouth.net


Robin, February 25, 2000 - Hi there fellow CHFers, I just wanted to add a note about diuretics. I have HCM and CHF. I have been using a natural diuretic I found myself to treat fluid buildup when necessary. It has never given me leg cramps. Maybe someone will find it useful. It is an indigenous Southeast Asian vegetable, which is dried and made into tea. You can buy it in any Chinese or Vietnamese grocery store. It is called Gohyah tea. The vegetable looks like a bumply green squash. Boy, does it work. It's very strong. rspooner@ziplink.net


Jon's February 25 reply to Robin's February 25, 2000 - Hi Robin and everyone, I have to speak up here, I'm afraid. Yep, here I go again. <g> If your doctor says it's okay, I'm all for herb use, but only if your doctor knows about it before you use it and okays your trying it. See my herbs page for examples of medicinal herbs - both good and bad.
     Otherwise, I urge everyone to stay away from herbal remedies, especially if they work! That means they are strong enough to have a drug-like action (drugs usually come from plants!). That makes them strong enough to interact with your prescription meds, possibly in a dangerous way. Furthermore, you have no way to control or even know the strength of any given batch. One batch may have no effect at all but the next one may land you in the emergency room of your local hospital. Finally, if you decide to take any herbal remedy, please list it on your wallet card!
     For what it's worth, gohyah is not listed in the Grieve's herbal database, the MPNA database at Michigan University or in the Phytochemical Database of the USDA - ARS - NGRL, so you are really dealing with an unknown substance as far as American medicine is concerned. Gohyah is mentioned on some Oriental (Okinawan, mostly) cooking sites, but only as a cooking ingredient - not as a medicinal herb - so I wonder what other substances are being added to achieve the potent diuretic effect you describe. Gohyah is described as a green bitter gourd with warts, planted in a southern area of Japan, but no diuretic action is mentioned that I can find. This may be a case of mislabeled substance, common in herb markets Jon.


Bill D's February 25 reply to Joy R's February 25, 2000 - Hi Joy, You should do some detective work. How many people work there? How many of them have heart problems? How old is the average employee? Is there anything in the building that's different? Then you can compare those figures with the average population and their tendency to have heart problems. That should keep you busy for years. Who knows? Maybe you will find a Love Canal that causes heart problems. <g> Bill D. billdog@gate.net


Jon's February 25 reply to Sandi M's February 23, 2000 - Hi Sandi, Please, please, please keep in mind that I am just a sick knife grinder/cabinetmaker. I don't have all the answers and end up scratching my rapidly balding head as much as anyone here over health dilemmas! I gotta tell you that I'm not a believer in eating bananas for potassium. They shoot it into your system in short-acting, uncontrolled spurts and absorption is erratic, depending on lots of factors.
     I have no idea why you have muscle cramps, but remember that potassium deficiency is by no means the only thing that causes such cramps. Magnesium or calcium imbalance, blood sugar problems (often seen with Coreg use), improper blood sodium level (unrelated to dietary intake), dehydration, nerve compression, inflammation of connective tissue, certain viruses, lousy physical condition, and who knows what else can all cause vicious muscle cramps. I'd say have a long talk with your doctor, not letting him blow off your symptoms. Jon.


Gaile, February 26, 2000 - Hi, My doctor took me off Coreg and I am now on Zebeta instead. He thought I would suffer less from depression and fatigue; I had a lot of problems with Coreg. I am less tired and less depressed, but my ankles have been very swollen since I switched to Zebeta, so obviously I'm retaining more fluid. My concern is whether Zebeta is as effective as Coreg. My doc says it is. Has anyone else made this switch, and what are you experiencing?
     My other concern is that I am still battling weight. My doctor says he would put me on that new fat blocker thing (can't remember the name) if I wanted to try it. Has anyone tried that with any luck? Thanks! gailec@netscape.net


Donna Z's February 26 reply to Joy R's February 25, 2000 - Hi, I also had 3 other people come down with CHF all around the same time I did. I work at a Vet School as a emergency medical technician and when I told this to my transplant doctor, she was very interested in trying to find out what might be going on with cross-species contamination and the number of people who came down with CHF. It seems like I just read somewhere that CHF seems to be on the rise and it was very strange that so many people who are young all got this at around the same time. Now, it could be that it was viral. I chose not to have a biopsy because of the risks and the treament was not going to change regardless.
     As far as herbs go, I would have to agree 100% with Jon. They are totally unregulated and people have been known to die from them, so I would be extremly careful when considering using them. A few years ago there was an herb tea for losing weight that some women died from as a result of using it. dzak@worldnet.att.net


Don J, February 26, 2000 - Hi Jon, As a matter of interest, I know tiredness goes with the territory, but how about sleepiness? No matter how much sleep I get, I have been going around sleepy all the time. Is this medication induced? I have not been taking medication too long so I am wondering if I am still having side effect problems. grumpngray@aol.com
 
Jon's note: I envy you!


Robin R's February 26 reply to Harriet P's February 25, 2000 - Hi, Reading your post made me wonder about yet another symptom of which I had been unaware. For about 2 months prior to my hospitalization this month, every time I went to a doctor my normally low blood pressure was plunging. I have many visits to many different specialties monthly, because of multiple diagnoses. They all noted it but none offered an explanation and it continued in the hospital. They often completely lost my dystolic reading off the guage. Is this an aspect CHF? I would like to find out. One thing I have learned from this experience is that knowledge is power. Grizzelda@webtv.net


Jon's February 26 reply to Robin R's February 26, 2000 - Hi Robin, I had this problem for awhile. It was meds related. Juggling meds and doses licked it. Jon.


Robin R's February 26 reply to Jon's February 25, 2000 - Gee Jon, After reading your list of possible causes for muuscle cramping, I figure I'm batting about 95% and considering myself lucky to have only had the one instance. I was so disappointed not to be able to join you in Thursday's Chat. Being on Webtv has it's drawbacks, Javanese speaking anyway. So I will content myself with the very enjoyable posts on this board. At least until I can update to a Java speaking PC. Robin. Grizzelda@webtv.net


Jon's February 26 reply to Robin R's February 26, 2000 - Hi Robin, Yeah, I'm not sure why Webtv is so limited in Java. I've talked to their tech suupport and honestly, they don't seem to care one way or the other. I need to do my own personal survey here, guys. I talked to Microsoft's Virtual Worlds Research Group and they're eager to help us get a virtual world going on this site to replace the chat room. They are currently setting up the prototype of a special patient resource for a USA cancer center and are willing to strip the location-specific stuff out of it and mail it to me so I can use it here, with their full support, all for free. As with all free stuff, there are a few catches! <g>
     The setup won't be ready until this summer. Also, it requires users to be running a PC (not Mac or Webtv) and to be running Internet Explorer 4 or higher. So I need to know how many people are not going to be able to use such a resource. If you use IE 3 or lower, refuse to use IE (which is cool - I refuse to use Netscape <g>), have a Mac, Webtv or have an old computer (486), I need you to e-mail me. Just click here and say "I won't be able to use it." Thanks, Jon.


Robin R's February 26 reply to Jon's February 25, 2000 - Thanks Jon, for that warning about herbal remedies. I certainly agree with you on that topic. Herbal remedies are just plain dangerous, any way you look at it. There are no controls on ingredients or packaging information and many have proven deadly in certain circumstances. Anyhow, I should have been more specific in my original post. Gohyah (also sometimes referred to in English as bitter melon, is an Asian vegetable. On the East Coast, you can buy it as a fresh vegetable at the market as well as a dried, shredded version for tea. It has been eaten fresh as well as dried throughout Southeast Asia and China fresh for generations.
     I have even seen it fresh in Shoppers Food Warehouse, a local American supermarket chain. All of my Asian friends are familiar with this vegetable and eat it. One is a retired director of an OBGYN Hospital from China and she told me it was commonly prescribed as a part of the diet for those needing its diuretic effect. Another group of Asian friends from Asia recounted its use for postpartum water reduction in women in rural Asia. This vegetable has a long history in Asia, yet is just becoming available in metropolitan areas in the USA. A lot of these types of folk remedies are often overlooked entirely by the established medical community, which is a shame, for some have a value.
     Personally, I would rather ingest a vegetable, with its concurrent nutrients intact (interestingly this one has a high potassium content) than a synthetic drug, with no nutrients. People in other parts of the world have used such available resources for hundreds of years and survived (even today, without the synthetic drug resources of the West). The main problem for researching this type of food is that it is not referenced in Western Medical literature because it is a food, not drugs or herbs. I wish there was more research conducted into the area of nutrition in this area. Thanks for your research in the literature! rspooner@ziplink.net


Jon's February 26 reply to Robin's February 26, 2000 - Hi Robin, Here we go again. <sigh> Plants ARE herbal remedies, as stated on my herb page. Some do have value. Many drugs come from plants. However, the theory that because it's a plant and therefore "natural," it must be "better" is illogical. Synthetics are synthetics for a very good reason - to control the active ingredient. Manufacturing a drug in synthetic form also keeps it's action undiluted and unaltered by other ingredients found in the natural form.
     If it's strong enough to act as a direutic, it's a drug! That's the bottom line here. It may interact with some prescription drugs, possibly doing you harm. It also throws a variable unknown to your doctors into your care, which means they can no longer be sure how to keep your electrolytes balanced. They can no longer predict with any accuracy what effects may be seen as a result of drug interaction. Is that wise?
     You say its use is accepted elsewhere. Does that make it safe? Show me the trials. If people in those countries where herbs are prevalent had easy access to cheap and safe prescription drugs, do you really think they'd still be using those herbs? I doubt it, I really do. Natural does not mean "safe." Never did, never will.
     Because you saw it in a US supermarket does not make any substance safe. I research the drugs my own doctor gives me to see how they performed in blinded, placebo-controlled trials because that is the only way to be sure a drug does what it is said to do, and no more. Other people's bodies may react to a substance completely differently than yours. That may invalidate their "evidence." My only real questions to you would be, "Did you tell your doctor about this before taking it?" "After taking it?" "Have you told him yet?"
     I plan on discussing one herbal remedy for my own use with my CHF specialist in a few days at my next appointment. I will not be taking it before getting his okay, which means letting him do his own research first. Jon.


Claudia, February 26, 2000 - Hi, Not all muscle cramps are heart and Lasix related. I suffered horrible muscle cramps for over 10 years. Once during that time, I went to the doctor with swollen hands, feet, and face. He gave me a diuretic (pre-CHF). My cramps got so bad I could not move without causing burning cramps for that entire day. In the end, I discovered that I was allergic to fish and that had caused the swelling. The cramps I had for 10 years were because my thyroid was not functioning. Now if my thyroid medication is not right and I take Lasix, I get terrible cramps. If you are going to ask for a thyroid test, it is vital that you have a TSH (Thyroid Stimulating Hormone) test, not just the T3 and T4 tests. If I had requested a TSH, I would never have suffered for 10 years with all those horrible burning cramps. I am not saying this is the answer for everyone, but it might help a few. I just don't think everything that we have wrong is all heart related. God bless! CMSchm@aol.com


Frank S' February 26 reply to Jon's February 26, 2000 - Hi, If I understand your post, it said that you think that your CHF doc will research an herb, which you will not take until he does the research. Either his practice is well staffed with research personnel, or he has the time to do research for his patients. He would have to be pretty savvy to figure out whether an herb, which he does not know the chemical content of, would be safe to interact with numerous drugs (chemicals) which you are taking. That kind of research is usually available thru sophisticated labs like the FDA, which by the way is reluctant to take on the food supplement and herbal industry due to the political implications. Perhaps you can give the rest of us your secret in finding doctors who are not only CHF specialists but also perform such help to their patients, no matter how esoteric the endeavour. Frank. marquasmith@mailcity.com


Jon's February 26 reply to Frank S' February 26, 2000 - Howdy-doo Frank, He is busy; president of a medical software company, Co-Director of Heart Transplant here, an active photographer and more. The secret is medical librarians. Almost every large hospital has them and their services are available at no charge to every doctor on staff there. I know about this because both my in-laws were medical librarians. They will do computerized database searches, correlate the results according to the doctor's instructions, print them out, and send them to the doctor. So all a doctor really has to do is ask the right questions, and wait for the results. General interaction possibilities can easily be discovered on well-known, common herbs.
     Finding a CHF doc can be the hardest thing in the world, and my thoughts about how to do it are on - you guessed it - my CHF specialist page. <g> I believe that Jesus led me straight to my doctor, knowing the need I would have for lots of extra help with this site down the road. He provided me with an Internet and patient oriented specialist who is very good at what he does. There are other doctors just as good out there - I would say Marc Silver and Gino are every bit as patient-oriented as my own CHF doc - but you must be willing to change and change and change again until you strike gold. It's possible - not necessarily easy. I dealt with an ER doc tonight that just made me want to literally scream, so I am in sympathy with your frustration, believe me. Jon.


Ben B's February 26 reply to Claudia's February 26, 2000 - Hi, I couldn't agree more! I have seen everything from hangnails to hiccups blamed on heart failure. This feeling may lead people to think that these maladies are a side effect of CHF, and thus they may think they have to live with it and not seek necessary and available treatment. It may also lead people to feel that it is a side effect of meds, and they may stop taking them. I am glad my doctor has the nerve to tell me when something has nothing to do with my heart. bdbrinkman@juno.com


Ben B's February 26 reply to Joy's February 25, 2000 - Hi, There are about 5 million people in the USA with CHF. Therefore it is not unlikely for more than one person in a workplace to have it. It is probably just a coincidence. If someone works in a place with a lot of employees, it would be strange if there were not more than one person with CHF. I personally know 5 people of all different ages with CHF. Two of them worked with me, but in a company with 350 employees, there were probably more people there with CHF that I did not know about. bdbrinkman@ieee.org


Rieale's February 26 reply to Donna Z's February 25, 2000 - Hi, Please be wary of cramping on the sides, especially if there is a sharp pain involved with taking deep breaths. Obviously many CHFers are also prone to pulmonary embolisms and this can often show up in pain caused by pleurisy. I developed this in the hospital when I was diagnosed and felt the pain for several weeks until the blood thinners kicked in and my doctor gave me an anti-inflammatory. It almost felt like I was being punched from the inside when I would inhale deeply or move too swiftly. Good luck to all. Rieale@aol.com


Bev T, February 26, 2000 - Hi, I've been hanging around, reading posts and doing pretty well, but one of you brought up something that I must ask about. Since going up to 50mg of Coreg twice a day, I am having trouble with my sugar levels. Prior to titrating up from 25 to 50mg, I had no problems, but Glucotrol XL isn't doing the job anymore. Does anyone else have high blood sugars with Coreg? Neither my cardiologist or endocronologist have made that connection. Thanks and God bless every one of us! Bev T. Mtnmama008@aol.com


Jon's February 26 reply to Bev T's February 26, 2000 - Hi Bev, I have non-diabetic experience with this problem. Coreg has pushed my blood sugar so high, my doctor is starting to worry. This effect of Coreg is listed on the manufacturer's site and on the package insert that comes with the drug. See the Coreg page and the files linked to it at the top of the page. Jon.


Jon, February 26, 2000 - Hi everyone, I boo-booed in the way I phrased things. Only the Chat room will be changed if I use the Virtual World software, not the rest of the site! The message boards and everything else will remain as is. Jon.


Thelma's February 27 reply to Gaile's February 26, 2000 - Dear Gaile, I'm not sure how many of us are on Zebeta. Anyone else? I think I mentioned before that I was put on Zebeta instead of Coreg, so I have not tried the Coreg. My doctors felt the results would be very similar and less side effects on Zebeta. As far as what I'm experiencing on Zebeta, now that I've started back to work I have had a big increase in tight, swollen legs. I never really had that much prior to work, so I doubt the Zebeta is to blame. I have had some periods of depression that come and go despite Paxil. This may be med related. All in all, I think I'm handling the Zebeta very well and the docs don't want to rock the boat by changing to Coreg. I sure hope it is as good as Coreg. Anyone else? Thelma. tcull@prodigy.net


Donna Z's February 27 reply to Bev T's February 26, 2000 - Hi Bev, I have also been having a lot of trouble with my blood sugar levels since taking larger doses of Coreg. My PCP is going to raies my Glucotol up to 10mg a day. If that doesn't work, he is sending me to a endocrinologist to see what can be done. My doctor wanted to put me on Glucophage but I told him no, since the warnings for that drug clearly state do not use if taking meds for heart failure. At times I feel like I can eat nothing. It's very frustrating. dzak@worldnet.att.net


Donna Z's February 27 reply to Ben B's February 26, 2000 - Hi Ben, I have to say I disagree with your statement about it being common for people who work together to have CHF, considering the population and that the number of CHF in relatively young people is growing at a alarming rate. It is not uncommon for elderly people to have CHF. It's almost part of the aging process, but when you take a work enviroment that in 18 months has 4 people come down with CHF and 3 of them almost at the same time, you have to wonder what the underlying factor is. My CHF doctor was very interested, especially since 2 of the people who were in their mid-twenties were working in the post room which was directly across from the labaratory in which I worked. The university is now conducting a study on horses who come in with colic and get heart failure. I'm not saying I have this as a result of working with these horses but the odds of 3 people having the same thing happen seem quite high. There was a fourth worker but she worked in a completely different area. Two of us were under 50 and the other 2 were much younger. dzak@worldnet.att.net


Joe S' February 27 reply to Ben B's February 26, 2000 - Hi Claudia and Ben B, Over my 56 years of heart problems, I have come to the conclusion that what we ingest can cause as many problems as anything else. I ate onions inadvertently Thursday and had horrible chest pains and arm cramps so that I couldn't sleep. If a food causes gas, avoid it. I think Rick said having CHF is like living in perpetual Lent. If eating only mild foods with no spices stops the pain, eat only mild foods. I have to avoid onions, chocolate and cheeses, even though I love them. Joe S. jes@stevensonlighting.com


Cindy M's February 27 reply to Gaile's February 26, 2000 - Dear Gaile, In regard to your considering the "fat blocker" drug your doctor offered you - please don't. You can't stay on that drug forever and while you may lose some weight, what will happen when you stop the drug? If you are like 95% of the population, within 5 years you will have regained all the weight you lost, plus some. This can't be good for your heart. I also struggle with my weight and have researched weight loss options diligently. The only proven method of weight control is to eat sensibly and stick to an exercise regimen. I am not talking dieting. I mean sensible, healthful eating, more often than not even though no one is perfect in their food selection. I'm not saying making a life-long commitment to exercise and eating well is easy, but in reality it is the only way you'll achieve lasting weight control results. Best, Cindy M. cynthialeigh@home.com


Al H's February 27 reply to Robin R's February 26, 2000 - Hi, My father in law does not have CHF but he always had normally low blood pressure. He has had recent spells over the past 18 months with fainting spells. My wife also has low blood pressure and has had one fainting spell. Because of this I have done some research on hypotension. I would suggest you use a search engine such as www.dogpile.com and do some research of your own.
     Many of the doctors my father in law has gone to have dismissed his blood pressure dropping off the charts, just as your doctors have. He plans to see a neurologist to ensure he does not have any other problems. From some of my research I have come across, some of the things he does daily which has caused some of his problems. In addition, he has started some new prescriptions. I hope this helps. Al H. bob_al@hotmail.com


Missy, February 28, 2000 - Hi Guys, I haven't posted for awhile. I'm feeling really great since I started the CoQ10, but of course finally getting over the flu really helps. Even though I had my flu shot, it seems like it takes us CHFers forever to get our strength back. Just think: spring is only a few weeks away. Missy. miniarabs@1st.nets


Victoria, February 28, 2000 - Hi, I have cardiomyopathy and asthma, and it has been pretty rough for me the past few months. I'm asking for prayer for our family, as we have lost our dear sweet mother (Febraury 12) due to CAD and complicatons from diabetes. She was the best thing that ever happened to our family and we all miss her terribly, but we take solace that she is with our Lord and Saviour now! I feel like a little girl even though I am 54 years old who has lost her mama. I seem to keep searching for her and it just breaks my heart. Please pray that the Lord will take this burden of grief from me because it is too hard to carry! I love you guys. Thanks. vfiorani@aol.com


Donna Z's February 28 reply to Rieale's February 27, 2000 - Hi, Thank you for the warning, but I'm already on Coumadin and have been having these side pains off and on for awhile. They feel like I've been doing too many push-ups so it most likely is just lack of muscle tone on my part but I will keep your advice in mind. dzak@worldnet.att.net


Billie Jo C's February 28 reply to Bill D's February 25, 2000 - Hi Bill, Thanks for the advice. Jon's SSD page was very informative and I would suggest any fellow newcomers in financial distress to check it out. Now that I know what to expect, how do I go about hiring one of these SSD lawyers? Does anyone know of a good one in the Seattle area? Should I sit through the rest of my 180 days and then get one should they deny me or go ahead and get one now? Well goodbye for now, good luck and prayers to all! Billie Jo. billiejoconley@aol.com


Carol W, February 28, 2000 - Hello everyone, This is not actually a new post, but a comment on meds and side effects that the doctors and CHF experts may not know about. Last August I was put on 60mg of Imdur 3 times a day after being on it twice a day. This had me taking one at bedtime. By November, I was having trouble sleeping through the night and it has only gotten worse, until 10 days ago. With my cardiologist's agreement, I stopped taking the evening dose. She didn't think that that could be the problem, but I could try it if I wanted. Surprise! Three nights later I was sleeping through the night, and still am. Maybe this is only a fluke, but what a relief it is to sleep all night. I can continue not taking the evening Imdur as long as it doesn't mean my chest pains come back or I am getting too tired again. By the way, this is the best message board I have found on any subject. Like most of us, I have multiple diagnoses. cabwojo@banet.net


Richard, February 29, 2000 - Hi everyone, It's been well over a year since I've posted. I had been working full time after bypass surgery in 1996, but last fall I was getting really run-down and developed pneumonia. This happened while I was going through an evaluation for transplant due to being really tired and after a cardiac cath showedmy EF to be 10%. Anyway, the next test was for Vo2max, which would show where I'd be placed on the list. Well, I did really well on that test, scoring a 20, where the cutoff for transplant is 15. The docs at Yale are perplexed but I thank God that I do not require a transplant yet. I no longer work and the next bridge to cross is SSD, which I'll be eligible for in May. Jon, thanks for keeping this site going. begin@snet.net


Bill D's February 29 reply to Billie Jo C's February 28, 2000 - Hi Billie, I am already on Social Security so I'm not much help. I see hundreds of attorneys listed in my yellow pages under "Social Security Disability Law" and many of them offer a free consultation. You could ask one if he could get your claim in less than 180 days. If he says: "No," he'll probabably take your case if it's denied. I don't think you need a crackerjack lawyer, just one who knows how to bug the bureaucrats! Bill D. billdog@gate.net


Ruthie A's February 29 reply to Carol W's February 28, 2000 - Hi Carol, If you were to read the RxList and RXmed links for Imdur, you would see that one of the side effects listed is insomnia. I take 120mg of Imdur at bedtime so I can breathe lying down. Unfortunately, the insomnia is severe and I have not slept in 3 days! Also, because of the venous pooling, it exacerbates the nerve problems in my legs and feet. Do any of you with diabetes who take Imdur have neuropathy problems? If so, what do you do about it?
     I am on 300mg of neurontin 3 times a day, but that does not help during the night with the Imdur. I have a call in to my doctor to see what we can do, but since I am so sensitive to meds, there are few options. If I could afford it, I would buy a good recliner and sleep in that but I can't, so I won't! Such is life. <g> Ruthie A. rlaba@mindspring.com


Al H's February 29 reply to Billie Jo C's February 28, 2000 - Hi, I say get one now, and it doesn't have to be one in Seattle. The atorneys with a link on Jon's SSD page will help you from their location in the central USA. Just call their 800 number and they will start with you. It is a long process, so be prepared to wait and wait. Let them fill out the paperwork from the beginning. Let a lawyer that has experience ask you the correct questions while they complete the questions. A good lawyer will know after they complete the questions and communicate with your doctor if you have a chance. I hope this helps. This was my experience. bob_al@hotmail.com


Robin R, February 29, 2000 - Hi All, I hope this finds everyone doing well. I just wanted to add my comments to the list of people discussing attributing everything to CHF. Because my primary diagnosis is SLE, I usually look there first when I have new symtoms. However, there are times when that must be looked at. For example, my lung problems were considered to be caused entirely by sudden onset asthma, including shortness of breath and saturation rates that were not in accordance with medical testing and symptoms exhibited. Mind you, this went on for 4 1/2 years. My doctors now know that my lung condition was never asthma, although I do have some allergy issues, but is related to the lupus. Now that I have the right medication, my quality of life has improved 100%.
     While my pulmonologist seems to think my lungs are the contributing factor in my heart condition, I have my doubts. I believe for reasons of timing and symptomology that my heart problem may very well be a seperate issue and related to meds I was put on about 5 years ago for a misdiagnosis that was definitely Lupus related. It was only a coincidence that a bad spell with "heart" symptoms happened at the same time as the virally induced respiratory arrest and.
     I guess what I am trying to say is that it all comes down to informed common sense, with informed being the operative word. I am so very greatful for the dialog that is available to us here. It goes a long way to keep us informed and allow us to understand and do our own research. Robin R. Grizzelda@webtv.net


Connie R, February 29, 2000 - Hi everyone, I went today to have an echo done and was talking to the tech about my EF. She said that they have stopped figuring that out when they do the test. The doctor looks at the echo and decides what the EF is. She said that the doctor compares this echo with the last and looks at how the heart muscle is working. I thought that the figure was an absolute number and not a subjective number. What a surprise! So I guess I'll have to wait for my appointment to see if there is any improvement with Coreg. crussell@parallel.park.uga.edu


Doug K's February 29 reply to Victoria's February 28, 2000 - Hello Victoria, I am sure that most of us can relate to how rough it is to lose a parent but with your health problems to deal with as well, it makes it even harder. Nothing I can say will make the hurt go away, but you have found a good place to talk about your pain, and your health problems. Just know that you are being thought about and prayed for. I hope that your grieving period will be easy enough for you to work your way through it, and short enough to let you get back to your own life. After losing both of my parents, I can relate to your statement about feeling like a little kid again. It is amazing how we never really lose those memories and feelings of them from our youth. It has been over 5 years since my Mother died and it seems just like yesterday sometimes. You will handle the burden of grief, though it may seem to be too difficult. Feel free to e-mail me if you like, and take care of yourself too! dgknuth@earthlink.net


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

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