The paperwork never ends The Archives
May 1-15, 2003 Archive Index CHFpatients.com

Jon 5-1     posts
 
Nan S 5-1     seek CHF doc in our part of New York
 
Valerie R 5-1     effects of eating sodium
 
Maggie R's 5-1 reply to Paul D's 4-29     effects of climate
 
Cat 5-1     does anyone use Vioxx?
 
Jon 5-1     to everyone in Texas & more
 
Karen K's 5-1 reply to Cat's 5-1     anti-inflammatory experience
 
Cat's 5-1 reply to Nan S' 5-1     CHF doc/med center suggestion
 
Susan's 5-1 reply to Cat's 5-1     what can we take for pain?!
 
Myrtle C 5-1     seek cause of depression
 
Peggy A 5-2     update, prescription
 
Sheryl C's 5-2 reply Cat's 5-1     Celebrex experience
 
Diane 5-2     starting Coreg question
 
Maria's 5-2 reply Cat's 5-1     painkiller experience
 
Valerie R 5-3     seek CHF doc in Miami
 
Karen K 5-3     prayer request
 
Joanne R's 5-3 reply to Diane's 5-2     Coreg experience
 
Larry J 5-3     seek asthma & beta-blocker experiences
 
Jon 5-4     new page about surgery and more
 
Cat's 5-4 reply to Larry J's 5-3     asthma and beta-blocker experience
 
Tom S' 5-4 reply to Larry J's 5-3     meds
 
Jon 5-4     recipes updates reflecting low carb
 
Henry T 5-5     good news update
 
Dave K's 5-5 reply to Tom S' 5-4     Viagra
 
Glenda 5-5     seek news on CHF and SARS
 
Don 5-5     depressed, no sex drive and more
 
Peggy A 5-6     frustrating Coumadin test results
 
Tom S' 5-6 reply to Dave K's 5-5     Viagra
 
Sheri M 5-6     what could be causing these spells?
 
Kay's 5-6 reply to Peggy A's 5-6     keeping INR stable - my experience
 
Noel 5-6     seek heart transplant listing experiences
 
Valerie R's 5-6 reply to Peggy A's 5-6     keeping INR stable - my experience
 
Margaret D's 5-7 reply to Valerie R's 5-6     my experience
 
Jon 5-7     for those eating low carb
 
Krista L's 5-7 reply to Noel's 5-6     heart transplant experience
 
Jack D's 5-7 reply to Jon's 5-7     why these?
 
Jon's 5-7 reply to Jack D's 5-7     for good stuff like,...
 
Valerie R's 5-8 reply to Margaret D's 5-7     my experience
 
Dede G 5-9     how do I handle this socially?
 
Tom S' 5-10 reply to Dede G's 5-9     my experience
 
Paul D's 5-10 reply to Dede G's 5-9     my experience
 
Kathy's 5-10 reply to Dede G's 5-9     my experience
 
Dennis D 5-10     statins and muscle pain questions
 
Joe S 5-10     does anyone have any ideas about this?
 
Joseph P 5-12     how do I get over exercise induced pains?
 
Gene 5-12     Coumadin and soy products question
 
Scott Brown's 5-12 reply to Diane's 5-2     hang in there
 
Tom S 5-13     Coumadin and PT (INR) experience
 
Joanne R's 5-13 reply to Dennis D's 5-10     could it be arthritis?
 
Joseph 5-13     what can I do to get better and more
 
Jon's 5-13 reply to Joseph's 5-13     getting better
 
Willie 5-14     sleep apnea and heart failure
 
Sheryl C's 5-14 reply to Joe S' 5-10     tingling fingers and diabetes
 
Gayle 5-14     good news - Coreg and prayer
 
Dennis D's 5-14 reply to Joanne's 5-13     thank you for the suggestion
 
Crystal S 5-14     update - specialist is the way to go
 
Joanie 5-14     intro and more
 
Michelle A's 5-15 reply to Joanie's 5-14     adult congenital heart defects
 
Vee's 5-15 reply to Dennis' 5-10     muscle pain experience
 
Joe S' 5-15 reply to Sheryl C's 5-14     doctors are so frustrating
 


Jon, May 1, 2003 - Hi everyone, My wife works all day and now she works for hours each night on her work network through our phone line. Since we cannot afford a second line downstairs, that makes it very hard for me to do any posts after 5:00 PM. So I apologize if nightly posts are not timely. We are facing a 20% cut in income in the next week or two due to her corporation being bought and her usual job being eliminated so this is likely to get worse rather than better. I should point out that God provides, though; she has a solid job already lined up, just with the much lower salary and longer hours. So it goes. Jon.


Nan S, May 1, 2003 - Hi, My husband was recently diagnosed with left ventricular systolic dysfunction and electrical problems. We have not been able to find a CHF specialist in eastern Suffolk County, New York. Can anyone help? Thank you. nrskahill@hotmail.com


Valerie R, May 1, 2003 - Hi, The surgeon who put my Insync in says it is operating well. The resynchronization part is working 100% of the time, and I wish this idea didn't bother me so. The doctor says I'm in heart failure because of too much salt. He's big on low-sodium and I have been very good but did go to a Cuban party (I live in Miami!) on Friday and had about 4 finger sandwiches and 2 turkey drumettes. He claims that did it.
     He says Accupril (and I thought he also said pacer!) is salt-sensitive and it takes 7 days to de-salt or something. Jon, does this sound reasonable? Anyway, he told me to double my diuretic, which I had already done. I had increased potassium and he had me go get a metabolic panel blood test. I go see my cardiologist next week, but I guess time and patience will tell. Valerie. vgrogers@aol.com
 
Jon's note: As far as I know, this is highly individual; there is a documented group of people who react much longer and harder to sodium intake than most


Maggie R's May 1 reply to Paul D's April 29, 2003 - Hi Paul, I live in the Houston area - on the water - on a boat. The salty humidity can't get much worse than that! I've had CHF for 14 months, so I've done all the seasons. I think it may have a lot to do with the individual. I would shrivel up and die if I had to live in the cold again. My heart and soul find great comfort in being on the saltwater and in warm weather. It does take a while to acclimatize. I live mostly outdoors year around. I do use light air conditioning at night for the comfort of my dog, and work 4 hours a day in a lightly air conditioned office. I seem to be doing very well. So I think it has a lot to do with what gives your soul comfort. madmaggie@mindless.com


Cat, May 1, 2003 - Hi all, This question is directed mainly to those that have arthritis pain and inflammation in addition to CHF. My orthopedist recently prescribed Vioxx, which I am afraid to take because the package insert said that the ACE inhibitor and Lasix I take can interact with it. It also said that it causes water retention and should be used with caution by people with heart problems.
     I don't want to exacerbate my CHF but don't relish the thought of having chronic disabling joint pain either. Has anyone successfully used Vioxx or is there another safer drug I can use? Thanks. As always, any input would be appreciated. lafsalot2000@yahoo.com


Jon, May 1, 2003 - Hi everyone, If you know of any good heart failure docs in Texas, please read Kelly's post to Jan M today on the loved one's forum. She also has some questions about her dad's symptoms maybe someone could help her with. Thanks, Jon.


Karen K's May 1 reply to Cat's May 1, 2003 - Hi, I will respond to your question regarding Vioxx. I have degenerative disk disease, scoliosis, and osteoarthritis. My back basically is a mess. I've been prescribed anti-inflammatories by a rheumatologist for a good number of years. I don't currently take Viox; I take Celebrex. However, I believe they are in much the same class (although Celebrex is a COX-2 inhibitor).
     Nevertheless, my CHF specialist is fully aware of all my medications. I will say that the best scenario would be if I didn't have to take Celebrex or any other anti-inflammatory. What my doctor did was cut my dose from 200mg a day to 100mg a day. My pain is constantly with me but it is even worse if I stop taking the Celebrex. I know 'cuz I tried.
     I guess what I would suggest is that you make sure all doctors you see are fully aware of any and all medications you take, even nonprescription meds. Then, let them make the decision as to how important any given medication is. Good luck! Karen. karenk@machlink.com


Cat's May 1 reply to Nan S' May 1, 2003 - Hi Nan, Stony Brook Hospital has a CHF department/treatment center which you might want to check out. lafsalot2000@yahoo.com


Susan's May 1 reply to Cat's May 1, 2003 - Yes, I think a lot of us would like to know what indeed we are able to take for joint pain, or any kind of pain for that matter. From what I gather, aspirin is the only safe thing to take. Is this correct? scamer39@rtcol.com


Myrtle C, May 1, 2003 - Hi, I am wondering if anyone has found that CoQ10 has brought on depression. I had depression for many years, and 18 months ago a new med helped me so much. I now am back in the depths of the jungle of depression. The only change was that I began taking CoQ10 three months ago and I raised the dosage 2 weeks ago. I know this probably is not the reason but am seeking to find an answer. Thanks for your help, Myrtle aka Omie. omie@axs4u.com


Peggy A, May 2, 2003 - Hi, I went to the neurologist Tuesday and he seemed pretty happy with my progress. He and his students gave me a thorough going over from head to toe. Then, he was going through my file - about 3 inches thick - and was obviously looking for something, but couldn't find it. He finally asked me if I had seen a certain doctor while in the hospital and if I had a specific test done. I didn't recall having met this doctor or that testing done. He wasn't too happy that this didn't happen, so he had his staff set me up with an appointment to see this specific doctor today. I don't remember exactly what kind of doctor this is and what he's going to do, but I'll find out this afternoon, I'm sure.
     The neurologist also diagnosed me with migraine headaches; I've felt like I've had them for years. He gave me some samples of Imitrex to take home, along with a prescription, and also had me to take a 50mg tablet to see if and what kind of reaction I would have to it. Well, it didn't phase me as far as the kind of reaction he was expecting!
     When I got home, I called the mail order pharmacy and inquired as to how much my co-pay for Imitrex would be and was informed that the doctor would have to call a special 800 number and get approval in order to prescribe Imitrex for me. I've contacted his office and made them aware of this. I'm waiting to see what happens.
     What I'd like to know is, when did the insurance company employees become doctors in charge of deciding what medications I will or won't be allowed to have prescribed for me?! I see that it's all about dollars for the insurance companies these days. pegalford@its.state.ms.us
 
Jon's note: The insurance company is right - Imitrex can be dangerous for some heart patients. Please be very careful and certain it is not placing you at risk!


Sheryl C's May 2 reply to Cat's May 1, 2003 - Hi Cat, I too am on Celebrex 100mg with all the usual CHF meds. That is the highest dose my cardiologist would let me take. Like Karen says, it helps. Good luck. Sheryl. cvprehab@hotmail.com


Diane, May 2, 2003 - Hi, I have had dilated cardiomyopathy for at least 10 years. They just now decided to start me on Coreg. I have low blood pressure and they want me in the hospital for monitoring. Does anyone know if they can really figure out in a short period of time if I will be able to handle it? I have my doubts. Any comments would be helpful. Thanks. dh3044@aol.com


Maria's May 2 reply to Cat's May 1, 2003 - Hi, My husband sees a CHF speicalist at Brigham & Women's in Boston. He will not let Kevin take Vioxx or Celebrex for pain. Kevin's pain and heart damage are the result of a blunt trauma to his chest (long story).
     He uses Ultram. His mom, who has a pacemaker, also uses Ultram. One of the e-mails suguested aspirin, which I don't think would be a good idea if you are already on a blood thinner (?). Kevin goes back and forth on pain meds. Some weeks he tries to gut it out while other weeks he can't. His doctor advised using the meds because it is more stressful to try to fight through the pain.
     It might be worth asking your doctor about. Take care and best wishes. kmmcf@vineyard.net
 
Jon's note: I had best luck with Ultram taking it on a regular schedule 3 times a day instead of waiting until the pain got bad


Valerie R, May 3, 2003 - Hi, I am looking for a CHF specialist in Miami, Florida. I think I need a second opinion. Valerie. vgrogers@aol.com


Karen K, May 3, 2003 - Hi, I need to ask all of you for your prayers. I'm in a pretty stressful situation right now. My husband was put in jail overnight for domestic abuse. I called the sheriff when he pushed me hard enought to cause me to fall flat on the back, knocking my head quite hard on the floor.
     I'm not sure if I've told you, but Glenn has MS. He had to take early retirement and is really not in the best of shape physically, although he refuses to limit himself, and he is full of anger and I believe, depressed much of the time. Unfortunately, when he gets angry he turns it toward me. Life has been hellacious for the past year. I think I can count on one hand the number of days that we didn't end up not talking to one another. I gave up because all I got in return was sarcastic remarks.
     The stress has reached such a level that I truly am concerned for myself and with what happened yesterday, I have taken the option of telling him I will be out of the house within 2 weeks. This house is less than 2 years old and we built it because of Glenn's MS. It is very handicapped-accessible with an open floor plan. For now, he is not allowed to contact me in any way nor can I contact him since there is a No Contact Order, which if either of us violated, could result in the guilty one being put in jail.
     I know a good part of this is Glenn's response to his MS but I've had my heart condition for 12 years. I went through about 2 years of depression and a lot of therapy to get to a good place in my life. I'm sorry to ramble. Please, just pray for the two of us. Karen. karenk@machlink.com


Joanne R's May 3 reply to Diane's May 2, 2003 - Hi, I was diagnosed with CHF in January of 2001 while hospitalized to treat pneumonia. After 8 days in Club Med, I was sent home with a very low dose of Coreg (among many other meds - all the usual suspects) and was told to return at 2-week intervals to the outpatient cardiac clinic. They would hook me up to monitors, give me some lunch, and a slightly increased dose of Coreg. Sometimes my blood pressure would drop enough for them to decide not to increase my Coreg for awhile. Sometimes the drop was not particularly alarming and so they would raise the dose.
     In April of 2001 I moved 2,200 miles back to my home town and a new doctor. I felt pretty badly off and on all summer. I had been promised that Coreg would make me feel worse before it made me feel better and it certainly did.
     Over time I have come to feel much better and so I would encourage you to hang in there, take your Coreg and ride it out. I think they can follow your response and learn a lot about your reaction in a relatively short period of time. Courage! As my Mama used to say, "Chins up." Be well and God bless, Joanne. muddyrds@hotmail.com


Larry J, May 3, 2003 - Hi, I been reading this board for 5+ years and have never posted. I have CHF, apnea, chronic rhinotusis, reflux, allergies, and moderate to severe asthma. I take Albuterol (90mg), Advair Discus (500/50), Zyrtec (10mg), Lisinopril/HCTZ (20/25mg), Rhinocort Aqua (9ml), Ambien (10mg), Viagra (100mg), Lasix (as needed), Predisone (as needed), Toprol-XL (25mg), Protonix (40mg),and allergy shots 2 times per week.
     After a long period of poor medical care and replacing several incompetent heart docs, I have been able to increase my LVEF to 55%. However, my childhood asthma returned with a vengeance and my quality of life is worse than ever. I was wondering if anyone has been able to successfully treat asthma while on beta-blockers and other heart drugs. We tried switching from Coreg to Toprol-XL, hoping that the latter is less selective and will allow my asthma/allergy drugs to work. This has provided some relief. I still feel bad but haven't had to go to the ER since the switch. lgboro@nuvox.net


Jon, May 4, 2003 - Hi everyone, I am just posting because I didn't get to posts last night due to fatigue. ;-) The new page about the "SAVER" heart failure surgery is done. You can view it at www.chfpatients.com/saver.htm. I have more mailings ready to go as well. You can subscribe or unsubscribe at www.chfpatients.com/lists.htm. Jon.


Cat's May 5 reply to Larry J's May 3, 2003 - Hi Larry, I am so sorry to hear that your childhood asthma has returned with a vengeance. I have emphysema and asthma, and am unable to tolerate any beta-blockers, even in baby doses. Have you ever tried Accolate, one in a new group of anti-asthma drugs? If not, you may want to ask your pulmonologist about it; it made a world of difference for me. Feel better soon. lafsalot2000@yahoo.com


Tom S' May 5 reply to Larry J's May 3, 2003 - Hi, Reading your medications list was like a Who's Who of pulmonary drugs until I got to the Viagra 100mg! Is that to get your respiration rate up or what? <g> bigheart@muchomail.com


Jon, May 4, 2003 - Hi everyone, For those who are on low-carbohydrate diets, I have started reworking the low-sodium recipes at Kitchen Corner to reflect which ones are low-carb and how many carbs are in those recipes. I will be adding new, low-carb, low-sodium recipes as time permits. Jon.


Henry T, May 5, 2003 - Hi, Last week marked my 5th anniversary of living well with CHF. I just had my second dual-lead ICD put in (in by 9, out by 5) and it's half the size and weight of the old one. I was zapped once by the old unit but since being on amiodarone (Cordarone) I've been zap-free. It's pretty amazing to witness the medical progress made in treating CHF over the past few years. I for one, am very thankful. hrticknor@msn.com


Dave K's May 5 reply to Tom S' May 4, 2003 - Hi Tom, Don't forget that Viagra was originally developed as a heart medicine. They discovered its present use by accident. dkreifeldt@yahoo.com


Glenda, May 5, 2003 - Hi, I am expat living in Beijing, and have CHF. News is censored here. I am wondering if anyone has info on getting SARS with CHF. gnajari2002@yahoo.com


Don, May 5, 2003 - Hi, I am 40 years old. I have had 5 heart attacks and have a right coronary artery aneurysm as a result of exposure to a nerve agent while in the military. On my 5th heart attack an ICD was implanted. I am on Coumadin, Lasix, Coreg, spironolactone, diovan, aspirin, plavix, and pravachol. My last heart attack was roughly a year ago.
     I am very depressed and have no energy even though my EF is quite good now. My chest is enlarging and very tender. I have no sex drive and Viagra has done nothing. Any thoughts or advice would be helpful. dgifford@fastmail.fm
 
Jon's note: Have your doctor take you off spironolactone


Peggy A, May 6, 2003 - Hi, My blood work today had me at 1.8, so Dr. Murphey adjusted my Coumadin dosage yet again. It has to be adjusted every week. I have to go back again next Monday. pegalford@its.state.ms.us


Tom S' May 6 reply to Dave K's May 5, 2003 - Hi, It's the other use that has me curious. I have heard some negative things about persons with heart conditions taking Viagra. Well, anything that keeps your boat floating. Mine is about to sink - do you think it would help me? <g> bigheart@muchomail.com


Sheri M, May 6, 2003 - Hi, My mom was diagnosed with cardiomyopathy and CHF as a result of her chemotherapy last year. In November, her EF was at 7%; in January it was up to 24%; and after what seems like a miracle, her EF is at 78%. That was on Friday.
     The problem is that she is feeling absolutely miserable! She says it feels like her hands and feet are swollen. She goes through spells where she gets a hot sweat, her chest feels tight, and she has a hard time breathing. It gets better in the morning, but returns at the end of the day.
     She is on Nexium for GERD, enalapril, Toprol-XL, spironolactone, and Lanoxin. What I am wondering is, could she be reacting to her Toprol-XL? She was never diagnosed with asthma, but it seems like she has the symptoms, or could she be allergic to to her meds? Or could her body just be coming back, as she puts it? Her doctors are doing everything they can, but when the spell comes over her, it scares her to death. Any ideas? wmoonen@charter.net
 
Jon's note: Not knowing much about her medical history, I can only guess - drug interaction. Get a cardiology consulting pharmacist to analyze her meds.


Kay's May 6 reply to Peggy A's May 6, 2003 - Hi Peggy, Are you on the brand name Coumadin or the generic warfarin? I had frustrating results with my INR until my nurse realized that I was taking generic warfarin instead of Coumadin. Ever since I switched to the brand name drug my INR is always right on the money.
     A word of caution: Do not automatically switch from generic to brand name without your doctors okay. Never change one for the other without the doc's say-so! Smiles, Kay. mbilczo@hotmail.com


Noel, May 6, 2003 - Hi, I was informed by VA that all of my required tests were done in the middle of February of 2003 so that I could be listed for a transplant. However, as of this date I have nothing confirming that this is actually happening. Has anyone else dealt with the VA for heart transplant? What is a typical time frame for a "private medical facility" to list someone? Thanks and May God bless you all. noel-palmer1@juno.com


Valerie R's May 5 reply to Peggy A's May 6, 2003 - Hi Peggy, I have been on Coumadin (warfarin) for 8 years. Get used to the constant changes. I've sort of learned the ins and outs, but I go every 4 weeks for blood work, sometimes every 2 weeks, rarely every 6 weeks.
     I need to be between 2 and 3 on INR, and so many things can throw it off, such as illness, too much greens or onions or other medicines like antibiotics that are new to your system. Let the doctor adjust your dosage: it's much easier than eating the same thing every day! I have also found that I do much, much better now that I am on the real Coumadin and not warfarin! Valerie. vgrogers@aol.com


Margaret D's May 7 reply to Valerie R's May 5, 2003 - Hi, Interesting responses about the Coumadin. I actually do take warfarin and have been very stable. I only need to get checked once a month. I have found it easy to keep my diet stable without boredom. I try to eat salads only a couple of times a week. I avoid multivitamins with any vitamin K in them, which might counteract the anticoagulant. I take it the same time each day and always take it as ordered. It's important also to never take any aspirin, which also might alter INR. mdavis10@tampabay.rr.com


Jon, May 7, 2003 - Hi everyone, If you are interested, I am making my list of food carbs available for download as a plain text file. This is just my own list of how many carbs are in what amounts of what foods. Get it at www.chfpatients.com/downloads/carb_gram_counter.txt. Jon.


Krista L's May 7 reply to Noel's May 6, 2003 - Hi Noel, I had my transplant a little over 2 years ago. After it was decided that this would be path taken and all the appropriate blood tests were completed, it took a little less than 2 weeks for me to be put on the list. There was a committee that had to review my case and I think it was more dependent on the fact that they only met at certain times. Good luck to you, Krista. kristalosey@hotmail.com


Jack D's May 7 reply to Jon's May 7, 2003 - Hi, I have somewhat the same list and when I discovered some of the nice items like pancake syrup. Well, when I discovered the pancake syrup and the chocolate syrup, I just wondered what I could possibly use them for? maddjak@hotmail.com


Jon's May 7 reply to Jack D's May 7, 2003 - Hey dude: Maple Chicken Strips, low-carb (homemade) waffles, and homemade ice cream, for a few. ;-) Let me know if you want the recipes. Jon.


Valerie R's May 8 reply to Margaret D's May 7, 2003 - Hi, Coumadin (warfarin) was easy for me for a long time and then I went whacky. When I had an ICD/pacer put in, the cardiologist who did it told me to eat no greens, no mayonnaise, don't go out to a restaurant, etc. Thankfully, he is not my regular cardiologist but his dire doom and gloom warnings affected me nonetheless, as did my new under-1000mg sodium diet. It's taken me awhile to come back to normal. I laughed when I found that cauliflower has mega-vitamin K and is not even green! Anyway, I am back to normal now and hope to soon be back on a once every 6 week program for most of the time. Valerie. vgrogers@aol.com


Dede G, May 9, 2003 - Hi, I'm 41 years old and have been living with CHF for 4-1/2 years. I've recently reconnected with some old high school friends I hadn't seen or heard from in about 20 years. We seem to be re-establishing our relationships. How do I tell them about myCHF, and do I tell them? I don't want their sympathy, but if it were happening to them I would want to know. argsmom@yahoo.com


Tom S' May 10 reply to Dede G's May 9, 2003 - Hi, It's your attitude that will determine how they react to it. If you make a big deal out of it and seem to be looking for the sympathy vote then I suppose you will get it and might either bring them closer to you or drive them away. Frankly, I hate the sympathy routine. I've had people grab for my arm as I stumble a little bit and it is almost rediculous. I feel like some people are afraid I am going to drop dead in front of them and they don't particularly want to make contact with my ugly face to give me CPR. I know I wouldn't want to. <g>
     I stayed away from my wife's church for a very long time because I knew she spread around the word that I was "terminally ill" and I did not want to deal with being an object of pity. I figured she could have the monopoly on that. I started going back to her church, which was the church of my youth prior to our marriage to which she had converted, and sure enough they threw me a pity party and I was not terribly comfortable with it.
     Prior to going back to our very socially active church, I coined a phrase which seems to work pretty well when well meaning folks ask me how I am feeling. I simply reply that I am vertical and breathing. To my closer friends I add I would prefer to be horizontal and breeding, but that is for another post. I use the phrase whenever anybody asks me "the question" and it seems to deflect a lot of reviewing my current condition which I don't really feel like going into.
     Inevitably you can tell some folks you are going to drop dead from CHF in the next 5 minutes and they will refer to some fifteenth cousin of theirs who was told they were going to die when they were 10 and lived until they were 98.
     Folks are always going to try and make comparisons, so whoever you tell, be prepared for the rumor mill to either have you dead or dying before the rumor can get back to you. Then there is the other extreme of having to listen to stories about how Aunt Millie had CHF and was given 5 hours to live and became the little engine that could, and puffed on for 30 years. I don't know about you but I know I don't wanna hear any more of those stories. bigheart@muchomail.com


Paul D's May 10 reply to Dede G's May 9, 2003 - Hi Dede, My style would be to wait until it seemed relevant for them to know about it, and then be matter of fact about it. Like if my old friends asked me to join them to play a quick game of basketball, I'd explain why I was saying no: but if it didn't otherwise affect our interaction, I'd wait until the inevitable, "We're all a lot older now, aren't we?" conversation. It's just another fact about your current life, right?
     That's me, though. Your mileage may vary, as they say. I don't think there is a right or wrong way, just what works for you. therealpauld@netscape.net


Kathy's May 10 reply to Dede G's May 9, 2003 - Hi, I have found that like everything else, I take it as it comes along. A huge help is to have a sense of humor about it. Your friends will be concerned and may see changes in you. That is a natural introduction to the situation, especially if you can't keep up with activities you used to do. If they are friends they will be concerned and helpful.
     A good example: I recently went to Las Vegas and my friends were the ones who arranged for a wheelchair for me. I felt shy about it but they insisted so I could keep up with them. Follow your friends' leads. kathyh@linkny.com


Dennis D, May 10, 2003 - Howdy all, I am currently taking Pravastatin and the typical CHF cocktail of meds. I suffer from severe muscle pain in my hips and lower back. I have had a series of blood tests and my doctors say everything looks okay. I think they are missing something.
     Has anyone else had real bad pain in their hips that they attribute to statin use? I think I may be asking my doctors the wrong questions. Any suggestions? Thanks, Dennis. dennis.rena@telusplanet.net


Joe S, May 10, 2003 - Hi, Fourteen months ago I had my aortic valve replaced and all was well until recently both ankles started swelling again. The docs say it is not heart-related but rather the way I sleep. It is getting worse and this morning my hands started tingling the same way. It's difficult to change habits related to being able to breath when CHF was so bad. Does anyone know how to get rid of this? Exercise? Positions? Etc.? Joe S. jes@gbis.com


Joseph P, May 12, 2003 - Hi, I have been feeling good here lately and started doing more things than I normally do - more walking, steps or stairs, lifting. I would think that after several weeks of these exercises that I would get away from the pain in the morning, which feel like when I did the exercises the first time. What would I have to do to ease the pain without giving up the exercise? joeandol@shawneelink.net


Gene, May 12, 2003 - Hi, Does anyone have thoughts on the use of soy products while taking Coumadin? I recently read some nutrition articles which recommended soy as a good food and substitute for animal protein. My concern is that soy is listed elsewhere as containing very high levels of Vitamin K, a no-no for Coumadin users. eloliver@excite.com
 
Jon's note: For what it is worth, vitamin K is not bad when you take Coumadin - as long as you eat roughly the same amount each week so your Coumadin dose can stay consistent.


Scott Brown's May 12 reply to Diane's May 2, 2003 - Hi Diane, Coreg will worsen your heart function before it improves it. If your heart function is already very poor, you may not be able to tolerate a large dose. They start at a small dose and build up every 2 weeks.
     Try to hang in there if you have a bad day or two. For me, it took a few days before I noticed any negative side effects; then I just had fatigue, etc. It seems like a very helpful drug. I am not 100% sure where the improvement has come from, but I am back to normal physical activity except when my heart rate gets up to about 180 bpm and then I hit the wall.
     Everyone is different, but I would suggest you go in with a positive attitude and the expectation everything will be fine. If you are looking for negative symptoms, you will find them (even if the Coreg does not cause them). Let me know how it goes. Scott Brown. kitchenerguy@hotmail.com


Tom S, May 13, 2003 - Hi, My Coumadin levels bounce between 1.7 and 2.9; ideal would be in the two's. This required major weekly blood lettings to determine, and generally resulted in a futile attempt to regulate it. Finally some merciful soul at my cardiology clinic bought a small self-contained ProThrombin (determines clotting rate) tester that only requires a single drop of blood, much like what I use with my home diabetes testing device.
     If it is being used in an office setting (at $68 per test to me) then it won't be too long before a home unit will be available. As a matter of fact, there is a Florida company that hawks a home PT testing device that sells for over $2500 and requires a rather elaborate looking little disposable test strip which probably adds significantly to the monthly cost. Currently only those such as heart transplant recipients are Medicare eligible for the device. The rest of us would pay full freight. bigheart@muchomail.com


Joanne R's May 13 reply to Dennis D's May 10, 2003 - Hi Dennis, Have you thought about arthritis? My daughter responds favorably to treatment for rheumatoid arthritis, although I don't think her blood tests ever confirmed RA beyond a shadow of a doubt. Perhaps you are asking the right questions of the wrong doctors. Be well and God bless, Joanne. muddyrds@hotmail.com


Joseph, May 13, 2003 - Hi everyone, I'll start by introducing myself. My name is Joe and I'm 58 years young. Six months ago I was diagnosed with 5 clogged arteries and CHF. I have suffered with tachycardia (SVT) for years, with the condition worsening with age and weight gain. I have refused a bypass operation. I've chosen to treat my artery problem with diet, exercise and a new drug called nanobac tx. It is supposed to remove calcium from arteries.
     Dieting and exercising have resulted in about a 70 lb weight loss. I have a baseline calcium score of a little over 1000 and am scheduled for retesting in a few months. Say a prayer for me, please.
     It is my hope to clear my arteries and do whatever necessary to return my heart to normal size. At this time, I do not know how severe my CHF is. I don't know what percentage my heart is enlarged. I do know my arteries are 60 to 70% blocked and I also know my EF is about 30%. At the time I was diagnosed (6 months ago) I was 70 lbs overweight with very high blood pressure. I was asymptomatic: No pain or shortness of breath. I did show slight fluid in my lung. I have not had a new echo so I don't know if my EF has improved.
     Can anyone tell me what else I can do to improve my condition and increase my EF? I walk 4 miles a day and have good exercise tolerence. Any info and help is greatly appreciated. I am currently on Coreg, Lasix, and nanobac tx. Nanaepopop@cs.com


Jon's May 13 reply to Joseph's May 13, 2003 - Hi, You might want to use a last initial to avoid identity confusion. I get asked so often how I got my EF to improve that I recently wrote a form letter stating the short version. By the way, I am helping my daughter find a used car to buy so bear with this tired daddy. ;-) Here's the letter stating why my EF improved and other ways you can increase the odds in your favor:

Jon.


Willie, May 14, 2003 - Hi, I have had CHF since September of 2002, along with being a diabetic, having sleep apnea, and having had CABG. About 3 weeks ago I received my CPAP and this has improved my quality of life already. I able to sleep now instead of staying up all night because I wasn't able to sleep.
     My follow-up is next week and I hope that the test test will show a great improvement. Not being a doctor but having diabetes for 22 years, sleep apnea for 13 years, and heart conditions for 18 years, I think that if you have problems with sleeping like snoring and falling asleep during the day, please let your heart team know. Being tested for sleep apnea and getting some help with it might also improve your heart failure. wamcc50@aol.com


Sheryl C's May 14 reply to Joe S' May 10, 2003 - Hi Joe, I seem to recall that you are also a diabetic. If so, tingling fingers may be related to nerves being pinched in the tunnels in your arm or wrist. Are you on neurontin for neuropathy? Better make an appointment with your endocrinologist. Good luck, Sheryl. cvprehab@hotmail.com


Gayle, May 14, 2003 - Hi all, Mostly I just lurk but I want to let everyone know my great news. I had a Saint Jude mitral valve and 5 bypasses in February of 2000. My EF was 23% at the time of surgery. By February of 2002 my EF was 15%. I take Coreg and boy, did it make me tired in the beginning!
     Since the first of this year I have started feeling better. Today I had testing and my EF is 35%! My heart is smaller too. The doc said it is either the Coreg or prayers or both. I just thought I'd let you know that the world is full of surprises. So take your Coreg and have everyone pray for you! gmholmes@cris.com


Dennis D's May 14 reply to Joanne's May 13, 2003 - Hi, Thanks for the suggestion, Joanne. I kind of doubt it is arthritis since I am 30 years old and never had any muscle pain before my heart attack. It all started when I started taking the statin. However, I have to admit that I never considered arthritis before. I always get so wrapped up in the side-effects of all of my meds that maybe I am not looking at the big picture. Perhaps a paradigm shift is needed. Thanks. dennis.rena@telusplanet.net
 
Jon's note: One potentially dangerous statin side effect is myalgia/rhabdomyolysis/polymyositis. A blood test is needed for CPK level. See www.acc.org/clinical/alerts/statins_june02.htm and www.medrants.com/archives/001081.html and www.annals.org/cgi/content/abstract/137/7/581


Crystal S, May 14, 2003 - Hi, I just wanted to let you know that this site has been such a help to me. I am 25 with a 3-year-old and an 8-month-old, and I have CHF. On Jon's advice I decided to find a CHF specialist after having problems with my cardiologist. I went to the Cleveland Clinic (about 50 miles away) and I found a wonderful specialist. He answered every question I had and then some!
     My cardiologist at home won't see me until June, even though I have called 3 times telling her I just don't feel well, I am extremely tired, am falling asleep while my 3-year-old destroys the living room; and at rehab I am having a hard time doing what is usually not that hard. Even after the nurse at rehab called because she was concerned too, they still said June. My rehab nurse was not happy about being talked to like, "Who are you and why are you calling?."
     I also went to the ER for chest pain. They said it was musculoskeletal but I don't agree. I felt like I was being stabbed in my heart, arm, and back. I was a gymnast for about 10 years so I know what muscle pain is and it definitely was not. Even after all that, she still didn't feel the need to see me.
     I called the Cleveland Clinic and they saw me 5 days later. Dr. Yamani, my CHF specialist, said my blood pressure is too low to raise my Coreg yet and that is part of the problem. He is also going to do a metabolic stress test next week. My PCP said I need to decide who I'm going to see because I shouldn't really see my cardiologist and my CHF specialist at the same time. Does that make sense? My husband says it's because she doesn't want to get more paperwork. I have such peace of mind after seeing a specialist. Thank you for stating the importance and thanks for letting me ramble! schramuno@prodigy.net
 
Jon's note: I would drop the general cardiologist


Joanie, May 14, 2003 - Hi, My name is Joanie. I am 24. I am a college student studying zoology. I stumbled on this site by looking for low sodium recipes. I have a congenital heart disease, congestive heart failure, and had a trach when I was 2. My heart defect is a single ventricle, pulmonary atesia, and tricuspid atresia. I have had about 9 open-heart surgeries, ablations and angioplasties. I am not allowed to have any more surgeries.
     I also have a-fib and and I was diagnosed with congestive heart failure in 1999. I recently had a lung consult that revealed allergies to cats, dust mites, and pet mites; I have 4 cats. I was getting checked for asthma. The specialist was not sure if I had asthma or not since I have a heart defect and heart failure, because both can affect the lungs. I was given Advair, Flonase, and Allegra. He said that my pressure is too high. If I remember correctly, he said the pressure is supposed to be at 24 and mine is at 84.
     I got confused with one part that he said. He said something about with my body size and age, my function is 50% of what it is supposed to be. Does that sound right? I do have problems with SOB and edema on my stomach and lower back.
     I am on a low sodium, low fluid diet, which is to be expected. I take digitek and have since birth, Coumadin, sotalol, Bumex, potassium and iron.
     The lung specialist wanted to see me back in 6 weeks so my next appointment is June 5. He is going to see if the flonase and advair are helping. If they are than I guess I do have asthma and if they are not helping I guess it is because of the heart defect and heart failure. My cardiology appointment was today but I got the dates mixed up and missed it so I have to reschedule my appointment. Joanie. brparker@fidnet.com


Michelle A's May 15 reply to Joanie's May 14, 2003 - Hi, I also have CHF due to congenital heart disease. If you haven't been there, I'd recommend the Adult Congenital Heart Association web site at www.achaheart.org. You will find a lot of support there, and you will find others with similar defects, procedures and complications.
     This is a good site, but since our anatomy isn't normal (I have TGA and a VSD), we don't "fit" too well here, although the people on this site are very supportive. Most of them seem to have cardiomyopathy or ischemic heart disease, which are very different from congenital heart disease.
     I am also on a low sodium diet, as I was diagnosed with CHF 11 years ago, at age 16. Do you have an ACHD doc? mianders@hotmail.com


Vee's May 15 reply to Dennis' May 10, 2003 - Hi Dennis, Potassium imbalance can also cause muscle pain or outright cramping. My doc says it's from transient changes in blood potassium levels. My lab tests have always been fine, but I wake up often with my legs aching and I'm sure it's meds-related. I stopped taking Mevacor because of this, but I think it probably had more to do with Lasix.
     I got it fairly well under control by tinkering with the timing of my prescription potassium supplement, not skipping meals on days I take Lasix, and eating lots of fruits and vegetables. Supplements just don't seem to serve the same function for me as nutrients from foods. I tried tonic water with quinine too, which I guess helps some people, but it didn't do anything for me. imagine_@earthlink.net


Joe S' May 15 reply to Sheryl C's May 14, 2003 - Hi Sheryl, I am so frustrated with the new laws which state you can't even get your medical records. Also most doctors are so afraid of being sued, they refuse to discuss your health. I changed PCPs the other day and all he told me is that I never had diabetes because no one can treat it with diet and exercise. Then my cardiologist refused to tell me anything about my surgery because that's the responsibility of the surgeon. He was fired 2 weeks after my surgery. Then they get mad if you ask a question. These egotistical doctors refuse to think anyone knows their own health. People in the eastern USA tell me it's worse there. Joe S. jes@gbis.com
 
Jon's note: You can get your own medical records - HIPPA in no way altered that. If a doctor refuses to discuss your health and you are not just stuck with him for some insurance reason, fire him.


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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