The paperwork never ends The Archives
December 1-15, 2005 Archive Index CHFpatients.com

Patrick M 12-5     seek asthma support group online
 
Jon 12-5     made it back
 
Jean H 12-5     how long does it take to find out for sure?
 
Pat K 12-5     how do you deal with shortness of breath?
 
Jane A 12-5     really having trouble coping - some questions
 
Jon's 12-5 reply to Jane A's 12-5     DNRs, devices, doctors & more
 
Scott B's 12-5 reply to Beverly's 11-29     activity, ICDs, and more
 
Susie M 12-5     can stress trigger heart failure symptoms?
 
Jon 12-6     prayer request
 
Margaret D's 12-6 reply to Pat K's 12-5     reducing shortness of breath
 
Margaret D's 12-6 reply to Jane A's 12-5     docs, DNR orders and more
 
Sandy N's 12-6 reply to Jane A's 12-5     forget that 5 years to live stuff
 
Scott B's 12-6 reply to Susie M's 12-5     controlling worsening edema
 
April P 12-6     what is an inconclusive stress test?
 
Debra S' 12-6 reply to Curt S' 11-28     BiV pacer/ICD really helped me
 
Mary B 12-6     what can help my dad sleep?
 
Tom S' 12-7 reply to Mary B's 12-6     sleep aid and message to veterans
 
Jerry B's 12-7 reply to Jane A's 12-5     living will decisions
 
Jon 12-8     we will be moving soon
 
Perrishe F 12-10     what can I do for my mom?
 
Tracey H 12-10     seek Avapro experiences & with spironolactone
 
Valerie R 12-10     seek ideas on teeth staining
 
Aubrey C's12-10 reply to Tom S' 12-7     VA meds, some good news
 
Sandy N's 12-10 reply to Perrishe F's 12-8     helping your mom
 
Susie 12-10     would exercise help?
 
Susie's 12-11 reply to Jon's 12-10     exercising
 
Jon 12-11     end of year note
 
Margaret D's 12-11 reply to Valerie's 12-8     tooth and mouth problems experience
 
Tom S' 12-14 reply to Aubrey C's 12-10     VA meds, there's always hope
 
Valerie R's 12-14 reply to Margaret D's 12-11     amiodarone, acid reflux
 
Cheryl C 12-14     good news update, this web site & more
 


Patrick M, December 5, 2005 - Hi all, I am looking for asthma groups. It's been awhile since I have posted because my CHF has been well compensated but my asthma has not. I almost died again last week from an attack. I would like to find a good asthma group like this one so I can get some info to take to my doctor who seems to take things I tell him too lightly. Does anyone know of a good asthma discussion group? Thanks and God bless, Patrick M. NarleyHarleyGuy@webtv.net


Jon, December 5, 2005 - Hi everyone, Well, I made it back into town alright. I did find out that long trips stink with bursitis in your hips, though. It's to the doctor tomorrow for more tests to see what ails me besides orneriness! I'll also be networking our two computers here at home (wired network, not wireless) so Linda and I can coordinate our CHFpatients.com stuff better, so I'll probably not get all caught up on my e-mail right away. If we end up moving, it's gonna be an exhausting experience, I am sure.
     Sorry for the extra delay in posts and e-mails but I had to completely rework all my e-mail profiles for security and confidentiality reasons today and it took pretty much all day. With tech changing all the time, new risks for breaching privacy keep appearing and I work hard at keeping communications private for the most part. Jon.


Jean H, December 5, 2005 - Hi, My doctor just called and said that the results of my tests said I have a blocked artery in the lower part. She said I should be on aspirin and she would call me back with information on a heart cath after she talks with my heart doctor. I told her I have been sick from the test and vomiting bile. She told me to hold off on the aspirin and she will get back with me. I have been waiting. How fast does this usually go after finding something? grandmalj@msn.com


Pat K, December 5, 2005 - Hi, CHF patient needs info on ways to handle being short of breath. pat1934@sbcglobal.net


Jane A, December 5, 2005 - Hi all, I'm 44, married, and have a teenage daughter. I was diagnosed with viral systolic CHF in June. I went into a coronary care unit with an EF of 15% and blood pressure of 70/30. I was eventually readmitted to the hospital 2 more times, for a total of 3 weeks, during the summer. I'm currently not eligible for a transplant and in March I'll be reevaluated for ICD implant. Right now I am struggling with trying to discern between reality and depression. I would like to believe I'm not going to become part of the 50% that die within 5 years, but I would also like to be prepared if my health takes another nosedive.
     How do I know what to put on a DNR order? What is considered an extreme measure? CPR for 20 minutes? Three defib shocks? I'm having a really hard time trying to figure out what I consider to be a good quality of life and when to pull the plug. I am obese and have hit the wall with my diet, and my cardiologist says that any surgery is out of the question, even for something simple like gallstones. Other than an ICD or transplant (and obviously meds and diet), what kinds of intervention are there?
     How do I explain any of this to my daughter? This summer she wouldn't go out with friends because she was afraid I would die while she was gone. My husband and I tried to tell her that wouldn't happen and she shouldn't take on that kind of responsibility. She is seeing a counselor and my health has been steady for a few months but I'm afraid she'll think the worst if she overhears my husband and I discussing options.
     Secondly, everyone tells me I have a right to know about my condition and the right to ask questions, but my cardiologist behaves as though my questions are an imposition and my primary care says I shouldn't expect a doctor to spend a lot time with me (maybe 15 minutes). He has other patients to tend to. After my transplant evaluation I started to ask a question about the Vo2Max test, and my cardio interrupted and told me he didn't know enough about test that to answer any questions.
     I requested to read my hospital charts. During my very first hospitalization there was a note regarding me as a possible ICD candidate, but my cardiologist never mentioned it to me until I asked about it in October. When I asked him why he never brought it up, he said it was because insurance wouldn't pay for it until I had been treated by meds for nine months. I had gone for 5 months believing my only choices were meds, transplant or death. This really bothers me because I truly thought I was going to die.
     Other than my weight, I had been healthy, with normal blood pressure, blood sugar and cholesterol. I had never spent a night in the hospital except for having my daughter, not so much as tonsilitis. Maybe I've watched too many movies, but in my naivete I thought my doctors would lead me through this, instead of me having to search the web for answers and options. It's really a sore point with me. Are all cardiologists like this? Am I really out of line? Do I owe my cardio an apology?
     Third, is there any kind of support group for CHF? Finding this site has been a godsend, but sometimes I'd like to talk to a person. Maybe that would alleviate some of my apprehension about the future. Regular counselors just don't have the medical knowledge and I have trouble separating the physical from the emotional. It all seems so connected to me. Thank you. sewsew@adelphia.net


Jon's December 5 reply to Jane A's December 5, 2005 - Hi Jane, That old 5 year statistic is no longer valid in any way. See chfpatients.com/archives/archives_search.htm#mortality_testing_and_numbers for why. An extreme measure is whatever you consider extreme enough not to want it done to you.
     As for doctors who won't take the time and make the effort to treat you like a human being, my personal opinion is, "Fire him." If your health insurance allows it, get a different doctor, definitely a heart failure specialist. My cardiologist treats his patients the same way my primary care doctor does: You may have a long wait but when he gets to you, he stays with you until you're satisfied that everything has been covered. They aren't just like that with me, they're always like that; I know because I've talked to other patients of theirs as well as their nurses. Besides, if a cardiologist doesn't know enough about a Vo2max test to explain it to you, he has no business treating heart failure patients or ordering tests for them!
     About the ICD, are you talking about an ICD, a pacemaker, a BiV pacemaker, or a combination device? The difference is huge. Again, it is not up to your doctor to decide whether or not your insurance will pay for something or under what circumstances. His job and his responsibility is to present you with all your treatment options and the potential risks and benefits of them. This doctor is no good for a patient who wants a partner in care. Jon.


Scott B's December 5 reply to Beverly's November 29, 2005 - Hi Beverly, I am on the borderline for sudden cardiac death. It can happen to anyone with heart failure but within heart failure patients, you are being classified as even higher risk. I think you need to work with your cardiologist to determine what types of activities you can engage in and when. For example, if you have a portable defibrillator in your house and there is someone else home, housework may be fine, and a good way to keep some level of fitness.
     Let's face it: If you can't do any activity, you are going to become deconditioned, and you don't that to happen either. Consider the ICD if you believe in it. It is minimally evasive and it could be a life saver. It will be a safety net so you can do whatever you want within reason. Good luck, Scott B. kitchenerguy@rogers.com


Susie M, December 5, 2005 - Hi, My husband has CHF and until the past 2 times of swelling, shortness of breath, etc,..., we could attribute it to salt. The last two times he has not had the salt but the shortness of breath and swelling was pretty bad and scary for him. My question is, both these times he was stressed about something and we are wondering if stress can trigger symptoms.
     He takes Lasix and the symptoms leave within 24 hours. He can't take Lasix every day because of his continued abnormal kidney blood tests. Thank you! This web site has been the most helpful info we have received. smiracle@showme.net


Jon, December 6, 2005 - Hi everyone, Well, I could be moving across the state in the next month or so. Please send prayers in general up for me and my wife. The details involved in whether or not to make the move - with an incredibly short window of decision - is really cramping our lives right now. Thanks, Jon.


Margaret D's December 6 reply to Pat K's December 5, 2005 - Hi Pat, You are sure to get many replies! In my opinion, the single most important thing someone can do to lessen shortness of breath is to restrict sodium intake. It is extremely important. I read all labels always. There are tons of hidden sodium in food and we have to educate ourselves. Some say to limit sodium intake to 2000 mg per day. Others say under 1500 mg per day. Sodium makes us hold onto water, which does not get pumped around and out, and causes fluid retention and SOB.
     I think of it as a sodium budget and I only have so much to spend. If you do the 2000 mg daily limit, think of it as 600 mg per meal and a couple of hundred left to play with for snacks. I wouldn't still be here if I hadn't followed it strictly! Good luck! mdavis10@tampabay.rr.com


Margaret D's December 6 reply to Jane A's December 5, 2005 - Hi Jane, I'm going to echo Jon on some points. First of all, just forget about the statistics. The doctors are just guessing and are outdated. Secondly, of course you are entitled to see your records. Find another cardiologist right away. I don't care how much time I take because that's what I am paying them for. It will help to educate yourself though, and have a list of prepared questions when you go in. Read The Manual and learn all about CHF and your drugs and diet, etc.
     As for the DNR order, that means do not resuscitate, period. If you mean a living will, that's different. I don't know if you can be as specific as you mention. For me, I wouldn't want anything done if my brain was gone. If I still had all my wits about me, then I would certainly have CPR and defibrillation (ICD) done. A feeding tube is a personal decision. I think the hospital has someone who can go over the info with you so you have an informed living will.
     Lastly, we have several support groups in my area. One is run at the local hospital and is for CHF patients. We have a speaker every month and it really is informative. The other is just for women. I only went to that twice as almost all had had bypasses and I couldn't relate since I have IDCM. Call your hospitals and check out your local paper. You might find a group.
     Oh, and please do not apologize to your doctor. You have done nothing wrong. mdavis10@tampabay.rr.com


Sandy N's December 6 reply to Jane A's December 5, 2005 - Hi Jane, First I'd like to tell you to slow your mind down. You sound like me, two years ago when I first found out I had "one to 5 years to live." Then after finding a great doctor; and finding this site, I began to understand how CHF works.
     The Heart and Vascular Institute of Florida has a support group, so you may find one at your local hospital. Just search the Internet and you will find one near.
     Please don't think you're gonna die. It's not an option in our world. We just enjoy and live for today. My doctor gave me an anti-depressant and now I'm feeling and thinking so much better about my diagnosis. My CHF doctor (doctor number 3) also is caring and supportive to my needs. His entire staff takes the time to talk to me whenever I need them. Please, slow down your thinking and treat your body well. Eat good food and omit what hurts you. Exercise each day and read a good novel each week. You're going to be fine.
     Fire your doctor and go find a CHF specialist! Mine spends at least 45 minutes to over an hour just sitting and chatting with me, each time I go. It was every two weeks in the early days and now I'm a regular, every three months, in his office. His office calls me at least once a month for no other reason than asking me how I am - that is a good CHF doctor!
     If you would like to chat, e-mail me anytime. Good luck to you and Happy Holidays to you and yours. bleuskiiisgrl@yahoo.com


Scott B's December 6 reply to Susie M's December 5, 2005 - Hi Susie, We need to return to the basics of why salt is not good for heart failure patients. Salt causes people to retain more water (fluid). Salt is not the only reason a person retains water. Fluid retention is taking place, since we know Lasix causes the symptoms to leave.
     Your cardiologist can give you reasons why your husband is retaining fluid, but some obvious reasons may include: Problems with kidney function, not enough diuretic, too much fluid intake, or worsening heart function. One thing he can start to do is restrict his fluid intake to 8 cups of fluid a day (maximum). If your husband can exercise, he can try to sweat some fluid out.
     Regardless, this is a serious matter which needs to be closely monitored. To get to the root of this, they will need to figure out what is at the root of the kidney problems. Best of luck, Scott Brown. kitchenerguy@rogers.com


April P, December 6, 2005 - Hi, I had a nuclear stress test that was inconclusive. What does this mean? Thanks. jonaprilpow@hotmail.com


Debra S' December 6 reply to Curt H's November 28, 2005 - The biventricular ICD plus pacemaker has kept me from going back into heart failure. Before I had it implanted I was constantly in and out of heart failure, and in and out of the hospital. I hope to hear how you have done. r_steinberg@sbcglobal.net


Mary B, December 6, 2005 - Hello, My 80 year old dad is in class 4 CHF and is having a really hard time with chronic insomnia. The nights are very difficult for him and I know the lack of sleep just makes his heart work harder. He tried Ambien for about a month but it didn't really give him any relief. He would only sleep for an hour or two and then he ended up getting up and pacing and being very unsteady. Being class 4, he won't stay in bed unless he's asleep.
     Bless his heart, he does everything the doctors ask him to do but there just doesn't seem to be anything that has worked for his insomnia. Any suggestions that have worked for others would be greatly appreciated. Thanks. planobryant@yahoo.com
 
Jon's note: Triazolam, Valium, Benadryl dye-free softgels, and Lunesta have all helped me one time or another. The triazolam and Benadryl have one advantage - you don't easily get accustomed to them so they keep working long-term.


Tom S' December 7 reply to Mary B's December 6, 2005 - Hi Mary, I've addressed this issue before and occaisionally I suffer from insomnia. I found mine was primarily due to being jarred awake for a bathroom call. One thing I do to increase my chances of returning to sleep once I am jarred awake for a call of nature is to keep a hospital urinal next to the bed. I have two with lids, and I cover them with a small towel so I don't gross my kids out. It seems to work pretty well because I don't have to get up and wake myself up anymore than I have to for completion of the essential task.
     I was also on Ambien and loved it, but at $92 out of pocket for a 30-day supply was expensive and it is one of the "glamor drugs" the VA (Veterans Administration) will not provide. Did you know they no longer provide glucose testing strips nor any kind of inhalant therapy (albuterol, etc.) nebulizer fluids? Medicare will cover a big part of that cost however.
     While I am at it, I'd like to remind those Veterans who are currently receiving prescriptions from the VA not to sign up for the Medicare Drug program. It is an unecessary expense and you will have 63 days, with no penalties, to sign up with Medicare if you are cut loose from the VA system. bigheart@muchomail.com


Jerry B's December 7 reply to Jane A's December 5, 2005 - Hi Jane, You need to discuss your code status with your doctors, family members and whoever else you may trust with knowledge in this area. When you make a decision, which could be anything from DNR to full code, you need to let your caregivers and especially your designated power of attorney person know what it is and have it written down in a living will or some other form.
     An ICD might be considered a mini-code without all the fuss and probably a better outcome. I just had one implanted the first part of November and it was a piece of cake for me. As a health care worker I know that a great number of people that have seen what goes on in an arrest situation would prefer not to have it done but it is a very personal and private decision. cpapq4@rainierconnect.com


Jon, December 8, 2005 - Hi everyone, Well, all the numbers crunched so that my wife and I will be moving to St. Louis as soon as possible. She starts her new job mid-January so for the next 2 months, I can't promise timely updates or answers on anything. We have to find a new house long-distance, sell this one, pack and move by the middle of next month. This is necessary since I can't contribute much to our income; the donations just aren't there, so she has to go where she can get top dollar for her skills and St. Louis is it for now. Back later, Jon.


Perrishe F, December 8, 2005 - Hello, My mom was recently diagnosed with CHF. The doctor says her heart is only at 30%. They don't really tell us much else. I don't know anything at all about this condition. I read that CoQ10 is good for the heart but my mom refuses to take anything not prescribed by the doctors. She doesn't want to hear anything about alternative medicines. She doesn't want to ask the doctor any questions about her condition. Whatever they say she goes along with.
     She is on Coreg, Lasix, and enalapril. I tell her she should see a heart specialist and she ignors me. It is very frustrating because she doesn't seem to be trying to help herself. Is there any advice out there for stubborn people like my mom?
     I know she is frightened and confused. This came on suddenly in October. She has always been such a strong person and then one day she just couldn't walk anymore without being tired. She has a lot of medical problems like diabetes, high blood presure.,and cancer. Is there anything I can do for her? Perrishe. perrishe@verizon.net


Tracey H, December 8, 2005 - Hello everyone and Merry Christmas, I have a question about meds. I was diagnosed with mitral valve stenosis and CHF about 3 years ago. I am currently on Diovan and spironolactone/HCT. Diovan is no longer on my preferred drug list so I am having to change to Avapro. Does anyone have any info on Avapro and will it interact with my spironolactone?
     I have been well compensated with my current meds and I am reluctant to change, but I really can't afford the Diovan now! Any info would be greatly appreciated! Have a great holiday! thicks@compascable.net


Valerie R, December 8, 2005 - Hello, I'm having problems with my teeth. They are badly staining in between and where my teeth overlap, even bonding stained overnight. The dentist feels something is changing the chemistry of the saliva and we have pretty much dismissed foods and coffee, and I don't smoke or drink tea.
     Either it is my medicine or perhaps an interaction between the medicines? My medicines are Accupril, furosemide, digoxin, Toprol_XL, provachol, Aldactone, Cordarone, Paxil, magnesium oxide, Centrum multivitamin, Coumadin, synthroid, Tums, nasacort, and protonix (most recent med for acid reflux). It's awful not to want to smile. Any help or suggestions? vgrogers@aol.com


Aubrey C's December 10 reply to Tom S' December 7, 2005 - Hi Tom, You mentioned in your note to Mary that you were having difficulty in getting inhalation aerosols from the VA. I don't understand why, unless you are going to a small clinic and they are having a problem in communication. I go to WPB, Florida VA medical center and have no problem in obtaining combivent (a mixture that includes albuterol) and also albuterol for when I have a problem breathing at night. You didn't mention if you were service-disabled; that, if anything, may make a difference?
     Some good news, my BNP had peaked out at 1230 last week but December 9th, it tested at 717. I'm not quite out of the woods and my body can't tell much difference because I'm still fighting the lung and heart fluid problem. Wishing all a merry Christmas and a prosperous and well new year. Aubrey. crownest2005@yahoo.com


Sandy N's December 10 reply to Perrishe F's December 8, 2005 - Hi Perrishe, You did not say the age of your mom, and that might help a lot as she sounds like my mom did when she was 75. My mom refused to read all the latest news on her illness. I am younger and went onto the Internet, and learned as much as I could because most doctors have no idea about CHF. I think once you convince your mom of this, she will try the self-help attitude on herself. Because we must help ourselves with this illness, we can't depend on a doctor for complete treatment.
     Tell your mom she must see a CHF specialist, one who will sit and explain what she must do to help herself. Also, there are many different vitamins as you spoke of, like CoQ10 and more that are very helpful to our treatment.
     Please tell her not to rely only on what her doctor tells her to do, and if he does not spend a lot of time with her it's time to fire him and find another doctor. She must do a lot of research on this nasty illiness. It's our responsibility to help ourselves and reading this site from cover to cover is a great start.
     The best thing you can do for your mom is just love her and let her know how much you want to help her. Just bring home the information, give it to her and she must be the one to make up her own mind as to how aggressively she will maintain her illness. Tell your mom I'm inviting her to come into this message board. We all share a heart problem and would love to discuss it with her. Maybe she can teach us a thing or two. Good luck to you and your mom. You're a good child! bleuskiiisgrl@yahoo.com


Susie, December 10, 2005 - Thank you, Scott B. That's helpful info to check out. Also, thank you Margaret D for salt info. This week, my husband has had shortness of breath from things that don't normally. For example, tonight we had to park at the back of a Walmart parking lot and by the time he walked to the door, he had shortness of breath. It went away while we were in Walmart, but came back walking to the car. Also, it seems like he feels it a lot when he bends over. It just seems to be increasing lately and I am not sure why. Other than that, all is great. His attitude is wonderful.
     Question: As I have been reading through this, we are wondering if this could be because he is decondioned? Kenny (my husband with CHF) and I are wondering if it is from lack of exercise and whether to start walking; or if it is from the CHF. If so, it would break my heart to see him exerting himself like that when maybe that is not best. He also has an ICD, AAA at 5.5, EF of 30% and left-sided heart failure. He is on Coreg, advicor (lipitor and niacin), aspirin, monopril, and amiodarone (which he will probably be taken off of Monday.) He works 2 days a week! Any advice? Thank you so much! Susie. smiracle@showme.net
 
Jon's note: With an AAA and ICD, he needs to talk to his heart failure specialist before beginning an exercise program.


Susie's December 11 reply to Jon's December 10, 2005 - Hi Jon, At his 3 month checkup last week, the cardiologist said it was okay for him exercise, and that walking is the best and to take it slow. It was even suggested he start cardiac rehab again but he doesn't want to do that. Tonight he walked the treadmill for the first time at 1.5 miles per hour and could do it for 10 minutes. He feels fine right now and is watching television. He wants to add 2 minutes per day.
     Monday we visit the electrophysiologist at Barnes for his ICD checkup and we will ask him about it also. I know the reason he walked tonight is because he wonders if the shortness of breath could be from lack of exercise. Two reasons he does not exercise are that he is exhausted most of the time already and wakes up that way. Who feels like exercising then? Also, when he has had a good day in the past, he overdid it and it brought him down a couple days. So I think he is scared to exercise in one sense and at the same time is now a bit discouraged to have short bouts of shortness of breath through many recent days.
     Thank you for this site. I guess our question is, can the lack of exercise cause the shortness of breath? Susie. smiracle@showme.net
 
Jon's note: I know he wants to see progress but adding 2 minutes a day will wear him out in 2 weeks and make him quit walking altogether. He should add about one minute per every 5 days for awhile. Really. The answer to your last question is yes, but it's a case by case thing. Only way to tell is exercise for at least 3 months to see if it improves.


Jon, December 11, 2005 - Hi everyone, Don't forget that donations to CHFpatients.com, Inc. are tax-deductible and it's approaching year end. If you need a little extra on the deduction side, now's the time to donate. See chfpatients.com/about.htm for how to donate. Jon.


Margaret D's December 11 reply to Valerie's December 8, 2005 - Hi Valerie, I would immediately suspect the amiodarone (Cordarone) is causing at least some of the problem. It is notorious for causing reflux, sometimes severe. All that acid can adversely affect your teeth. I had very severe silent reflux from it, and didn't know it except that my sleep was greatly affected. I started on Protonix in the morning and also took ranitidine (generic Zantac) at bedtime. I keep a water bottle next to my bed and when I wake up or go to the bathroom, take a swig and swish it around my mouth. I was told to get a wedge to sleep on to elevate the torso, or you could just elevate the head of the bed on blocks. I also tried not to eat anything 3 hours before I went to bed. I use a Sonicare toothbrush instead of an ordinary one. I hope this helps some! mdavis10@tampabay.rr.com


Tom S' December 14 reply to Aubrey C's December 10, 2005 - Hi Aubrey, Currently I travel an additional 40 miles just so I can go to a regional VA hospital - William Hefner at Salisbury, North Carolina. To make a long story short, while the VA is the supplier, typically my prescriptions are ordered by my local cardiologist and pulmonologist. The VA usually rubber stamps and provides the "civilian" ordered scripts.
     Last February I had a hospital stay which included a heart cath that showed my EF to be "immeasureable" and was subsequently prescribed 24/7 supplemental oxygen. The VA later took over providing the oxygen extractor machine, large emergency tank, and smaller traveling tanks with a demand regulator.
     At the time I was told I was prescribed nebulizer treatments with Duoneb (ipratropium bromide and albuterole sulfate) inhalation solution four times a day. I was told it was prescribed because the lungs tend to become "lazy" when on supplemental oxygen and this would help keep the little air sacs open as much as possible. I find if I don't use it, my lungs do start burning and I do start collecting fluid on my lungs.
     To answer your question, yes I am a service related VA patient but I was told they do not provide certain meds as a matter of course. Perhaps it would be encouraging to tell those that worry about such things that I have outlived all expectations of my cardiologists, pulmonologists, medical doctors, nurses, and priest by 11 years. So keep the faith and keep chugging along, life is wonderful even if it is measured.
     A very happy and holy Christmas to all our friends who read the CHF forum, and particularly to Jon and his family, along with high hopes for a happy and prosperous New Year. bigheart@muchomail.com


Valerie R's December 14 reply to Margaret D's December 11, 2005 - Hi and Thank you for your input. I hate amiodarone but my cardiologist won't let me stop taking it, even after it affected thyroid. I've also been tested and have acid reflux. I take protonix for it and it seems to work pretty well. I'm going to run this all by the cardiologist. vgrogers@aol.com


Cheryl C, December 14, 2005 - Hi everyone, Thanks to all of you who responded to my questions about an ICD. Here's my update: I have decided definitely not to consider an ICD at this time. My 6-months echocardiogram was even better than I had thought it would be. My EF is now 55 to 60%, my heart is no longer enlarged - both right and left ventricles are normal size, and 2 valves are no longer leaking at all (only slight leakage previously). My upper valve in the left chamber is still leaking but my cardiologist said we'd keep our eye on it. I don't have to return for 3 months unless I have a problem.
     I will continue my 12.5mg of Coreg and 10mg of benezephil and continue my low sodium diet. If it ain't broke, don't fix it. <g> Initially the doctor had said 2000 mg of sodium per day, but I've actually been between 500 to 1000mg instead. It was easier for me to completely cut out high sodium items than to constantly keep track of my intake per day and mess with my taste buds. Also, I've been without any diuretic since I'd been out of the hospital for a month, so I had to be compliant about the sodium or go and admit my failing. <g>
     Regardless, it appears that it did pay off, so I may lighten up a bit now, but maybe not! The great thing about this web site is everyone's willingness to help each other, and the wealth of information provided here. Jon has done a most excellent job of putting forth information in a manner that the average person can understand. For anyone new to the site, go back and read The Archives of old posts. There is a wealth of first hand information there also.
     I realize that I'm not "cured," this is just a reprieve of unknown length and I'm not leaving the site. However, for anyone who is new here, this may provide a ray of hope for the future. Please follow what your doctor says to do. If you don't, you are only cheating yourself. Merry Christmas and God bless everyone. Cheryl C. cocojo86@yahoo.com


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005 Jon C.

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