The paperwork never ends The Archives
March 16-31, 2004 Archive Index CHFpatients.com

Pat's 3-16 reply to Steve's 3-15     my SSD experience
 
Susan 3-16     thanks to Janet
 
Susan 3-16     seek chemo-induced CHF experiences
 
Mike's 3-18 reply to Steve's 3-15     SSD denial experience
 
Jon 3-18     does anyone else get this?
 
Eric Adams 3-18     extra Coreg pills, what to do?
 
Cheri 3-18     what should I do about Coreg's effects?
 
Jon's 3-18 reply to Cheri's 3-18     just my personal opinion
 
Evelyn's 3-18 reply to Jon's 3-18     I have some of that too
 
Joy's 3-18 reply to Jon's 3-18     similar to me, and to Eric
 
Janet's 3-18 reply to Jon's 3-18     fish oil for inflammation
 
Jon's 3-18 reply to Janet's 3-18     fish oil for inflammation
 
Tom S' 3-18 reply to Jon's 3-18     aches and pains
 
Rick M's 3-18 reply to Eric Adam's 3-18     making big ones into small ones
 
Carolyn 3-19     seek Demadex experiences & more
 
Ruthie A's 3-19 reply to Jon's 3-18     muscle, joint and bone pain
 
Jeat 3-19     how do I improve fatigue?
 
Marly's 3-19 reply to Jon's 3-18     similar muscle pain & more
 
Lauren 3-19     seek liver enlargement experiences
 
Roz' 3-19 reply to Jon's 3-18     muscle pain possibility
 
Kate's 3-19 reply to Eric's 3-18     left-over pills
 
Belle's 3-19 reply to Susan's 3-16     chemo effects
 
Kate's 3-19 reply to Susan's 3-16     chemo effects and resources
 
Jacky's 3-20 reply to Jeat's 3-19     leg weakness
 
Linda's 3-20 reply to Susan's 3-16     cancer survivors list resource
 
Ruthie A's 3-20 reply to Jon's 3-18     rheumatoid arthritis, maybe?
 
Kate's 3-20 reply to Jon's 3-18     statins a possibility
 
Jack D's 3-20 reply to Carolyn's 3-19     multiple diuretics might work
 
Susan's 3-20 reply to Belle's 3-19     and to Kate
 
Susan 3-20     is this from increasing dose?
 
Pat W R's 3-20 reply to Lauren's 3-19     liver congestion experience
 
Rick M's 3-20 reply to Jon's 3-19     consider polymyositis
 
Jon's 3-20 reply to Rick M's 3-20     taking prednisone
 
Hope M 3-20     NSAIDs questions
 
Jon's 3-20 reply to Hope M's 3-20     I hope others reply also
 
Phyllis 3-20     seek transplant prednisone experiences
 
Vee's 3-20 reply to Jon's 3-18     possibilities for bone, muscle pain
 
Mika 3-20     chemo-induced cardiomyopathy
 
Anita C's 3-20 reply to Phyllis' 3-20     transplant prednisone experience
 
Hope M 3-20     NSAIDs, respiratory infections & more
 
Ron 3-22     weight loss & sleeplessness question
 
Robert 3-22     can diuretic be injected?
 
Scott Brown's 3-22 reply to Cheri's 3-18     Coreg experience
 
Alexandra 3-22     thanks, am getting pacemaker
 
Jim 3-22     should I take meds, exercise?
 
Jon's 3-22 reply to Jim's 3-22     some opinions
 
Andy Pritchard 3-23     does anyone else have this feeling in chest?
 
Janet's 3-23 reply to Jim's 3-22     exercise, testing, meds
 
Fred Durbin 3-23     seek heart transplant experiences
 
Janet's 3-23 reply to Ron's 3-22     insomnia, supplements
 
Jim's 3-23 reply to Jon's 3-22     more on my situation
 
Jon 3-24     low sodium cheddar available
 
James 3-24     why do we have dry skin?
 
Jon's 3-24 reply to James's 3-24     just my thoughts
 
Deb's 3-24 reply to Jon's 3-18     bone and muscle pain
 
Jacky 3-24     lower sodium Swiss cheese
 
Janet's 3-24 reply to James' 3-24     dry skin experience
 
Michele 3-25     seek Florida CHF doc
 
Debi's 3-25 reply to James' 3-24     moisturizing product for dry skin
 
Kate 3-26     sudden hair loss - any ideas?
 
Ralph Moon 3-26     muscle and joint pain
 
Hope M's 3-26 reply to Ron's 3-22     Coreg and sleeping, an alternative
 
Hope M's 3-26 reply to Andy's 3-23     PVCs, heart feelings and more
 
Beckie's 3-27 reply to Kate's 3-26     hair falling out from meds
 
Teresa M 3-27     getting it off my chest
 
Janet's 3-27 reply to Kate's 3-26     some hair loss ideas
 
Janet's 3-27 reply to Ralph's 3-26     have you tried glucosamine?
 
Katherine H's 3-27 reply to Kate's 3-26     thyroid and hair loss experience
 
Sandy 3-27     glucosamine is helping my joint pain
 
Alexandra 3-27     am I just being selfish?
 
Paul D's 3-27 reply to Kate's 3-26     hair loss possibilities
 
Jacky's 3-27 reply to Alexandra's 3-27     having more kids is risky
 
Alexandra's 3-27 reply to Jon's 3-27     having more kids
 
Janet's 3-27 reply to Alexandra's 3-27     having more kids is risky
 
Janet's 3-27 reply to Teresa's 3-27     coping
 
Jack D's 3-27 reply to Sandy's 3-27     don't buy MSM
 
Hope M's 3-27 reply to Alexandra's 3-27     having more kids with weak heart
 
Kate 3-27     thanks for ideas & more
 
Jacky's 3-29 reply to Kate's 3-27     hair loss
 
Beckie's 3-29 reply to Janet's 3-27     thyroid and hair loss
 
Kim 3-29     must vent, I am so frustrated
 
Myrtle C 3-29     neurontin has helped me
 


Pat's March 16 reply to Steve's March 15, 2004 - Hi, I was turned down for SSD when I applied on my own. So I hired a lawyer well versed in SSD applications. My lawyer met with my doctor for a deposition and stayed on top of all of the "stuff" SSA wanted. I did almost nothing. Approval was given before going to court. My bank account had a bunch of "extra" money in it - that is how I first discovered that I had been approved. The whole process took about a year. Hopefully you have a financial base to help you suvive financially for a year or so. PTYoumans@aol.com


Susan, March 16, 2004 - Hi, Thanks to Janet for replying regarding taking statins. I am staying at my sister's, out of state, and can't reply on my home e-mail address since I've had it temporarily disconnected while away from home - saving on the bills. scamer39@rtcol.com


Susan, March 16, 2004 - Hi all, This seems like a very helpful place to give and get support, although I wish I did not need to be here. I am 42 years of age and found out about a month ago that I have chemo-induced DCM with an EF of 20%. I was hospitalized since I had gone into a-fib and CHF. I had been feeling quite a bit better but now I am having more bouts of feeling really tired, with weakness in my upper arms. Any thoughts regarding arm weakness?
     Of greatest concern to me is that I need to make a decision very soon about doing radiation therapy for my breast cancer (left chest wall). While I am working closely with my doctors, I wish I could connect with someone who has had a heart condition similar to mine prior to starting radiation therapy. According to the docs I am a rarity - apparently most people who develop heart damage from chemo do so "down the road" instead of in the midst of chemo.
     I plan to contact some of those from the Me Too! section that have chemo induced cardiomyopathy and maybe that will help, but I thought a post here could be of help too. Thanks for any help you have to offer. I hope in the future that I can be of help to others. God's peace, Susan. flobirfly@hotmail.com


Mike's March 18 reply to Steve's March 15, 2004 - Hi, I was turned down twice before hiring a lawyer. EF is not the only criteria they follow because mine was 30 to 35% when I was finally approved. I also have a leaking mitral valve, a closed right coronary artery from on old heart attack, chronic a-fib and an enlarged heart. I have diagnosed carpal tunnel syndrome and a hiatal hernia, as well as being 59 years old, and they still turned me down twice. Good luck. msisbell@earthlink.net


Jon, March 18, 2004 - Hi everyone, Yesterday I had a problem that has been recurring off and on in the past few months. Basically, I wake up feeling that inflammation is racking my entire body. I have serious muscle aches and pains, my joints hurt, and in some parts of my body even my bones seem to hurt. Does anyone else have days like this? I usually have a faster than usual heart rate and some palpitations when this occurs. It is bad enough to shut me down for the day.
     On another note, our Board of Directors okayed a specific chat room purchase so I will be sending the company a check tomorrow. In a week or two, the chat room should be up and running. It wasn't what I really wanted but we would need an expensive dedicated server to get something ideal, and this will do. There will be no ads. :-) Jon.


Eric Adams, March 18, 2004 - Hi, I have been a member of this board for years and was diagnosed in 1999 with CM and CHF. My EF was as low as 5 to 10% and over the years has increased to the current 30%. My Coreg use has decreased from four 25mg tablets per day to two 12.5mg tablets twice a day. This has caused me to have over 300 extra 25mg tablets that I can no longer use. Coreg is a very expensive drug and I believe there is some law that this medicine cannot be given to anyone else even though they have a prescription from their doc. That was probably started by the drug companies so they can make many more dollars. I sure hate to throw all those drugs away considering the high cost of them. Does any suggestions on this? Please reply by e-mail. eric.adams10@verizon.net


Cheri, March 18, 2004 - Hi all, I'm new to this site, and t seems very helpful. My cardiologist put me on Coreg and Mavik in January. I'm only up to 6.5mg once per day and 9.75mg once per day on Coreg, and Mavik 2mg once per day. Since then I've felt like a zombie! I'm spacy, depressed and lethargic. I should also tell you that I take Wellbutrin (which I've been on for some time and causes no problems) and Synthroid since I had my thyroid removed due to cancer.
     The change I've felt is definitely related to the heart meds. I have a very good doc and she keeps ignoring my symptoms and concerns, and says "Stay on it - it's the best for what you have." I don't know what to do. It's affecting my work and my life. What do you think I should do? cherikizman0135@msn.com


Jon's March 18 reply to Cheri's March 18, 2004 - Hi Cheri, I am not trying to be a smart-aleck, but if your doctor doesn't listen to you or doesn't take you seriously, how can she be a good doctor? I would strongly urge you to seek a different, better doctor - a CHF specialist.
     Coreg can cause or worsen depression - this is a well-known side effect. People who are already depressed or prone to depression should not usually take it.
     On the other hand, lethargy can be caused by extreme fatigue and often, staying on Coreg longer-term will cause your body to adapt, eliminating that problem. Your call, but if serious depression is involved, I would suggest going off Coreg with your doctor's help. Jon.


Evelyn's March 18 reply to Jon's March 18, 2004 - Hi, I too have mornings when I wake up and everything feels swollen and painful. I always thought it was from getting (dare I say) older. I think for me, my hands are the worst - they ache. First thing I do is run them under cold water. I have also talked to the nurse about this and she just said there was nothing she knew of that would cause it. I guess they don't know everything. Take care and I hope I was some help, if anything, to let ya know you're not alone. Ev. eveysue@hotmail.com


Joy's March 18 reply to Jon's March 18, 2004 - Hi Jon, You described very accurately my joint and muscle problems. Interestingly, my PVCs and PACs are more active than usual when my pains and aches increase. I also feel extremely warm and it has nothing to do with the "hot flashes" business.
     I have some arthritis confirmed by studies and tests but certainly not all over. I can say it is very debilitating to deal with. My energy level drops to zero and I cannot cope with the little problems that crop up in daily routine of life when they become severe.
     In addition, I was just started on the statin drug Crestor and I haven't had one day without severe leg pain since I started the drug 3 weeks ago. I did read many of the usual side effects improve after about 6 weeks. Of course I am aware of neuropathy occuring from statins, so if no improvement occurs I will not be taking this drug.
     In regards to Eric's post, can you take one 25mg dose of Coreg twice a day? Pjkachel@aol.com


Janet's March 18 reply to Jon's March 18, 2004 - Hi Jon, I am offering a general reply to the issue of inflammation. I personally have not experienced what you are going through, but I would say that to some extent you are lucky that you are able to recognize what is going on inside your body. For a lot of people the inflammation is silent and they have no outward symptoms so it's there smoldering and you just don't realize it until it turns into a disease state.
     I have become a big fan of pharmaceutical grade fish oil. I've taken fish oil for a number of years, but with all the recent finding of toxins in even farm raised fish, I've switched to the highly purified version of pharmaceutical grade. Of course you can eat wild salmon or omega-3 rich fish 2 to 3 times per week and that works too. (Jon's note: Those salmon steaks at your local market that look so fresh are almost guaranteed to be farm raised, not wild. Canned salmon is more likely to be wild.)
     I read The "Omega RX Zone" this year and some of the book made fish oil sound too good to be true, but I actually think it is very powerful, especially regarding inflammation. Please check into the eicosanoid research that Barry Sears and others have done. They are addressing inflammation by influencing the good/bad eicosanoid balance. This is the way a lot of over-the-counter and pharmaceutical anti-inflammatory drugs work. They block these pathways. Most have heard of some of the eicosanoids such as prostaglandins, thromboxanes and leukotrienes. If you want to learn more about eicosanoids go to www.drsears.com/drsearspages/understandeicos.jsp.
     I also need to get a plug in here for a book I ran across last year that has become one of my health bibles. It was written by the two doctors that run the Canyon Ranch Spa and is called UltraPrevention. These doctors really get it! There are not many like them unfortunately, but luckily they wrote a book. There is a whole chapter on inflammation. They consider it one of the five forces of illness. Their web site is www.ultraprevention.com/index.html. They also talk about Vo2max in the book and how to drive that higher with interval training. I highly recommend this book.
     Last but not least, if you are lucky enough to have one of those PCPs that really do get it, there is a blood test that measures C-reactive protein, which helps spot inflammation in the body. Of course, this is only a marker so it's not going to tell you the cause or the root problem. Barry Sears says the best test for inflammation is an AA/EPA test that is not widely available. I hope this helps. Janet. janetca1@msn.com


Jon's March 18 reply to Janet's March 18, 2004 - Hi Janet, I would say I have no luck at all, since it seems this inflammation has already reached a "disease state" but not one easily recognized by doctors, thus I get no effective treatment!
     I am not sold, yet anyway, on fish oil unless a deficiency exists. The doses claimed to fight inflammation are high (I would have to take at least 7 grams daily) and I'm not into mega-doses in general. I'm taking enough pills that I like a lot of proof before adding a bunch more. <g>
     Some of the trials I have seen on fish oil for arthritis included only patients with diets low in those oils (mine isn't) or combined the fish oil therapy with another therapy, making it hard to know which had the effect. Then, of course, there is the potential mercury risk and the money involved, of which I have none right now. ;-)
     Honestly, a lot of the physical processes involved in inflammation are beyond my understanding, so I could be missing something important. It is a very complex problem. If you grasp it, you are doing better than I am. That's one reason I don't get into it much on-site; that and the failure of targeted anti-inflammatory heart failure therapies to date. It is possible that previous therapies have been too targeted; Celacade is far more systemic and may actually work. I confess I have not researched arthritis as much as I should, but there are only so many hours in a day. Jon.


Tom S' March 18 reply to Jon's March 18, 2004 - Hi, It seems ironic that you should mention this. I too have suffered similar symptoms and generally associate them with a combination of factors including low heart rates and probably a low EF. Actually, there isn't a minute of the day when I do not suffer from some kind of ache or pain. It has gotten to the point that I more or less ignore them until something reminds me that I am in pain. Weird but true. bigheart@muchomail.com


Rick M's March 18 reply to Eric Adam's March 18, 2004 - Hi, Your local drugstore will sell you a pill splitter, a simple little plastic cutter that will turn your 25mg tablets into two 12.5mg tablets right berore your very eyes. The VA supplies many of its pills in larger doses with instructions to split. Many expensive drugs cost the same in larger doses, as in smaller ones, so it's a good idea to check. rearadml@highstream.net


Carolyn, March 19, 2004 - Hi, My right heart cath is over, I have all the results, copies of everything. I am still trying to get over the long trip and understand it all. I have more than 20 lbs of fluid around my heart. The doctor said this was major and we have got to get it off, even if that means going into the hospital. He changed my diuretic from Lasix to a drug called Demadex. He talked like a flood gate would open. It doesn't seem like it is doing much more than the Lasix. Does it take awhile to get going? Also, he said my blood vessels are like copper tubes (acting like them) instead of a water hose. I feel very bad, I cannot do anything. Is there anyone who has ever had this drug?
     I have also been on Lovenox injections and my OB-GYN started Lupron. I have been on Lupron before and everything was fine so I am not real concerned about that. The doctor was very persistent that I take it very easy. Of course, he doesn't want to cause stress over something that may not happen so I am not going to start worrying myself. I just feel very weak and tired. nannahealed11@knology.net


Ruthie A's March 19 reply to Jon's March 18, 2004 - Hiya Jon, Unfortunately there are a lot of us with the same complaint as you. In fact, I was on the phone with my CHF doc's nurse today because I was experiencing that terrible everywhere-and-in-every-joint pain, plus extreme fatigue. I also experience increased chest pain when I have these bad pains.
     My PCP decided I was having a heart attack and ordered all these tests. I thought they were unwarranted so I checked with my CHF doc. It seems that they have been getting similar complaints from most of the patients in the clinic. Some people hurt so badly they are not able to make clinic appointments.
     The weather changes seem to precipitate some of these complaints, making me wonder if it's arthritic driven, partially at least. The nurse said it seems that on days like today (cold and damp) they get more calls complaining of inflammation and swelling with pain than any other time. Do you find the weather may be linked to your problem?
     I have been diagnosed with severe osteoarthritis, but a lot of my pain is in the muscles too. I even can feel bone pain several inches below my arthritic knees. The docs seem to think it's all arthritis, but I dunno. Maybe it will be like the leg pain and insomnia: The docs will have no clue and we will basically have to live with it.
     I hope you are feeling better. I'm hobbling around here barely able to walk without falling over, wishing time would hurry up so I can take another pain pill! :-( Ruthie. rlaba51@yahoo.com
 
Jon's note: No weather connection here. My joint and bone pain is accelerating at a frightening rate the past few months - gotta be a reason for it.


Jeat, March 19, 2004 - Hi, I am new to CHF as I was recenly diagnosed. I am on several medications now in addition to oxygen each night. Things I use to do, I can no longer do. One day I do things with no problems and then the next day I do the samething but only accomplish half the work because I start huffing and puffing, get tired, and my legs will barely hold me up. I am open to any and all suggestions that may give me additional information regarding this problem. Thanks. jeat@sbcglobal.net


Marly's March 19 reply to Jon's March 18, 2004 - Hi, I do get the same symptoms when I have an overdose of sodium, liquid, or uric acid forming substances, or all of these. I usually take Celebrex for the uric acid problem. Also, I get these symptoms when I don't get my usual exercise or whole body massage, and there are lots of tiny bubbles or clots (maybe lactic acid crystals) formed in my veins due to poor perfusion of the muscles and organs. phmcardenas@pacific.net.ph


Lauren, March 19, 2004 - Hi, I have a query. I have dilated cardiomyopathy and recently I have been having problems with pain in my abdomen. The doctor did blood work and it appears that one of my liver enzymes was very high. He examined me and said that my liver was enlarged. I am worried as I know that liver enlargement can be related to heart failure, but my last echocardiogram showed a marked improvement, with an EF of 51%. The doctor also checked for lumps in my lymph node areas. After my last echo, I have felt good and even started back at work 2 days a week and have taken on extra study. I am having an ultrasound Monday to check out my liver, but the doctor said that even if this does not show anything he will follow up with a CT scan and even a surgeon.
     This doctor is not my cardiologist and I am concerned that all these tests may be because of heart failure. I am not sure what to do. I am going to have the ultrasound and take it from there, I suppose. Has anyone else had an enlarged liver because of heart failure and if so, what was done for it? I hope you can help me shed some light on this as I don't want to undergo unnecessary tests. Thanks, Lauren. lauren.arnott@bigpond.com
 
Jon's note: I have. IV diuretics (Bumex) removed the fluid causing the liver enlargement. That doesn't mean this is the case with you but that was my experience.


Roz' March 19 reply to Jon's March 18, 2004 - Dear Jon, I suppose you are now flooded by hypotheses hoping to explain your muscle aches and pains, but here is one more. My husband was miserable with very similar symptoms and his PCP tested for Polymyalgia Rheumatica by simply trying the known reliever, one low dose of prednisone. There are few tests for this condition, as creatine kinase levels, for example, which are elevated in polymyositis, are normal. One dose and all the pain, stiffness, fatigue, simply disappeared. I realize, old friend, that anecdotal evidence is not worth much to you but if this helps, it may pay a small amount of the debt that this old CHFer owes you. As always, best wishes, Roz. RWarriston@aol.com
 
Jon's note: I need to know all the angles so every bit of info is important. I am currently more concerned with the bone pain than the muscle aches.


Kate's March 19 reply to Eric's March 18, 2004 - Dear Eric, I split my beta-blockers and 5 other pills all the time with a pill splitter. For anyone who ever has leftover heart-related pills, please call your cardiologist before throwing anything away. If you have a heart transplant unit nearby, talk to them too. tothymecottage@frontiernet.net


Belle's March 19 reply to Susan's March 16, 2004 - Hi, I don't know if it's that unusual to suffer cardiomyopathy side effects during chemotherapy. Adriamycin is the usual culprit. My mother had chemo last year and it had to be stopped after the 5th cycle because of exactly the same thing: CHF, a-fib, and pulmonary embolism. Her EF went down to 38%. She was in the ICU for 3 days.
     Regarding arm weakness, I don't know what that could be from. Mom was generally tired and weak especially after the heart problems occurred. However, she eventually got better. Her last EF measurement was 52% and she's feeling fine now except for tiredness.
     About radiation, I have no info regarding that and its effects on DCM. I suppose if they target the cancer area in the chest wall with the proper dose, they could minimize the effects it could have in the other organs. Perhaps some others here can help you with that. You're in my prayers, Belle. kippershark@yahoo.com


Kate's March 19 reply to Susan's March 16, 2004 - Dear Susan, I have chemo-induced CHF, but I'm not the best source of info for you. My chemo was over 20 years ago for leukemia, my CHF diagnosed 10 years ago, and my age is 55. Might I suggest that you call your local Breast Cancer Society chapter and ask them if they can put you in touch with other people in your area who are of similar age and health status. I know the Leukemia Society does that for their patients and I suspect the Breast Cancer folks may too. Check with some of the nurses where you receive treatment and see if they know of anyone.
     Emotional experiences may all be somewhat similar, but being in touch with someone who is going through it today, under similar circumstances, adds a level of comfort that you may not get from others. My very best wishes for many years of good days. I know they are hard to envision when in the midst of it all, but they can and do come. Kate. tothymecottage@frontiernet.net


Jacky's March 20 reply to Jeat's March 19, 2004 - Hi, You mentioned leg problems and I am having a terrible problem with legs giving out. It scares me as sometimes there is nowhere to sit or lean. It has always been bad when I go upstairs, but this is at any time. My arms are bad too but that does not matter so much, I can avoid lifting my arms up! I wondered if this could be from the maximum dose of Coreg at 25mg twice daily. I just increased to this dose in January. jackymwb@earthlink.net
 
Jon's note: If you take a statin cholesterol-lowering drug, tell your doctor about these symptoms immediately.


Linda's March 20 reply to Susan's March 16, 2004 - Hi, To all those on this board who have chemo or radiation induced heart failure, I am just letting you know there is another resource for these type of problems called the long-term survivors discussion list. Here is the Url to join: http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1. Unfortunately, cardiac problems related to cancer treatment are far more common than most physicians know. We have a list of physicians who are knowledgable about chemo and radiation induced heart failure. zame@earthlink.net


Ruthie A's March 20 reply to Jon's March 18, 2004 - Hi Jon, Another idea just came to me: Have you talked to your doctor about the possibility of rheumatoid arthritis? I'm not sure your symptoms fit exactly, but it's a shot. You are the right age for onset. Just a thought. My prayers are with you. Ruthie A. rlaba51@yahoo.com
 
Jon's note: It's occurred to me and I am talking to another doctor about all this soon - I'll keep this in mind


Kate's March 20 reply to Jon's March 18, 2004 - Hi Jon, How is your cholesterol? I just heard a radio discussion today about the possible future use of statins to reduce joint inflammation. Apparently docs have noticed that the anti-inflammatory impact carries over to joints. So, if you need to bring down the old cholesterol you might get a very beneficial side effect.
     On the downside, statins can cause muscle pain but that occurs in a small percentage. It's worth checking unless Atkins has kept your cholesterol in check. As I'm sure you've heard, they are now looking to keep LDL much lower so you might qualify even if you test within current acceptable limits. Kate. tothymecottage@frontiernet.net
 
Jon's note: Luckily, my cholesterol is very good.


Jack D's March 20 reply to Carolyn's March 19, 2004 - Hello Carolyn, I am on Demadex, Lasix and Edecrin. All three are diuretics that work differently. Demadex had stopped working for me, then Lasix stopped. With a little experimentation and help from my doc, I found out that I couldn't take any diuretic continuously. I had to skip a day, and I had to have different ones. I take Demadex every other day, but one of those days I also take Lasix - the other I take Edecrin. Everything works out fine. So see if your doc would let you take the Lasix and the Demadex. maddjak@hotmail.com


Susan's March 20 reply to Belle's March 19, 2004 - Dear Belle and Kate, I had been checking to board daily in hopes that someone would reply. I've been feeling like the Lone Ranger at times in regards to the chemo-induced DCM and doing left wall chest radiation. I am starting to get some answers from docs, just not as clear cut as I would like it to be.
     Belle, it is encouraging to hear about your mother improving. I am very hopeful that I will improve. Thanks for the tip, Kate, on who to contact. I have asked several nurses and they did not know of anyone, but I will keep searching! Several people have responded to me at my personal e-mail address and that has been helpful. Thanks again! Susan. flobirfly@hotmail.com
 
Jon's note: Nine people are listed at Me Too with chemo-induced CHF. See www.chfpatients.com/biosgate2.htm.


Susan, March 20, 2004 - Hi Everyone, I am really starting to struggle more with feeling tired. I get very sleepy (afternoon and evening) sometimes and my muscles feel weak and worn out. I notice it the most in my arms. I am 5 weeks post-diagnosis for DCM and a-fib, so this is all still very new to me. I am still working on increasing my lisinopril to a target dose of 40mg BID. Tomorrow I am supposed to increase to 20mg BID. My blood pressure has been low the last couple of days. I am feeling less well, as the days go by. I am wondering if this persistent increasing unwell feeling is related to slowly increasing my lisinopril. Your input, please? Susan. flobirfly@hotmail.com


Pat W R's March 20 reply to Lauren's March 19, 2004 - Hi Lauren and Everyone, I have also had the same problem. I didn't know what was going on either. I found out that I was retaining water in my belly and had a congested liver. I had the IV diuretics, cut back on my sodium and fluid intake, and it eventually waned away. I let this go so long that I was having severe SOB, nausea, a very uncomfortable inability to swallow and finally CHF. I then learned that I had not properly balanced my diet for months. That was about 4 months ago. I have since then stuck with my diet and have not had problems with the belly and abdomen retention since. I wish you the very best! Pat. rollinright@cableone.net


Rick M's March 20 reply to Jon's March 19, 2004 - Hi Jon old friend, Experience has taught me that it is never wise to disagree with Roz, so for the sake of all, I urge you to open your mind on the subject of muscle pain versus joint or bone pain. Some years ago I suffered from extreme pain in all my limbs and was at the maximum treatment available at that time, from my doctors in Florida.
     That summer, as I was lamenting my woes to my Connecticut neighbor, who happened to be one of the Navy's nuclear doctors, he suggested that maybe my lack of relief was because I didn't have the affliction for which I was being treated but that like Roz's husband, I had polimyositis. I began treatment with prednisone, which made life bearable and in a few years I was cured so now I'm perfect. When all else fails, try something else. rearadml@highstream.net


Jon's March 20 reply to Rick M's March 20, 2004 - Hey Rick, Roz is a character, ain't she?! <g> I didn't want to get too wordy but I have had several courses of prednisone, mainly for a torn arm muscle I am still struggling to overcome without surgery. Unfortunately, I got no relief for my bone and muscle pains. I sure gained weight and got grouchy (grouchier, according to my long-suffering wife), though. ;-) Jon.


Hope M, March 20, 2004 - Hi, I have CHF with an EF of 30%, very enlarged left ventricle, and an artificial mitral valve. I take Coumadin (warfarin), digoxin (Lanoxin), Toprol-XL, dyazide, potassium, hormones, and vitamins with minerals.
     My question is about ibuprofen versus Vioxx. I had been taking ibuprofen 600mg twice a day for my achey body for a number of years. My internal medicine doctor urged me to switch to Vioxx since he is worried about ulcers. My cardiologist says he is always trying to get patients off Vioxx, mainly due to high blood pressure but mine is low (100/70), and he also has other reservations about Vioxx that he didn't get into. He said I could take the Vioxx if I wanted.
     For the past 4 to 5 weeks I've had a heck of a time trying to shake an upper respiratory infection. My internist finally prescribed an antibiotic. I saw an ad for Vioxx in Reader's Digest and upper respiratory tract infections are first on the list of common side effects. This information was not on the info sheet the pharmacist gave me. Anyway, I've stopped taking the Vioxx, hoping I'll get over the infection sooner. I've gone back to ibuprofen.
     Can anyone shed some light on these two medications and CHF, upper respiratory tract infections, and benefits or side effects? Thanks, Hope. hlmcneil@earthlink.net


Jon's March 20 reply to Hope M's March 20, 2004 - Hi Hope, CHF doctors always discourage NSAID use but some are more likely to cause problems than others. Ibuprofen is less likely to cause fluid retention than Celebrex, which is less likely to cause fluid retention than Vioxx, which is less likely to cause fluid retention than prednisone. At least, that's what I hear from doctors who routinely treat CHF. Jon.


Phyllis, March 20, 2004 - Hi, Have any transplant recipients been taken off prednisone after they were 2 years out from their transplant? Is there any hope of getting off prednisone if you are that far out? Thanks, Phyllis. pwatjen@sbcglobal.net


Vee's March 20 reply to Jon's March 18, 2004 - Hey Jon, If you're not about sick and tired of all our opinions, let me add my 2¢ worth on possible causes of bone and muscle pain. One very common cause is vitamin D deficiency that increases as body stores are depleted during winter months. For me, vitamin D supplements worked wonders within about a week to stop my accelerating nightly bone and muscle pain. On the other hand, I never had the other systemic symptoms you describe and I do have an obscure metabolic defect that probably contributed to the problem.
     Another possibility is that since you've been on such a restricted diet for a long time, it's possible you could have some micronutrient deficiency or hormone/enzyme/mineral imbalance. Dare I say it? You might consider going off Atkins for a few weeks and see what happens. As my doctor loves to point out, when you hear the sound of hoof beats, look for horses before you look for zebras. ;-) Wishing you well, Vee. imagine_@earthlink.net


Mika, March 20, 2004 - Hi, I too have a cancer related DCM. I was given doxorubicin (Adriamycin) 17 years ago as part of treatment for osteosarcoma, a form of cancer of the bone. I understand that this drug quite often causes cardiotoxicity - sometimes during treatment, but more often years after. I got my diagnosis for DCM last November after a few months-long spell of CHF. I am feeling much better now, compensated on Coreg and enalapril. There are some articles out there on the topic. If interested, try PubMed.com. Thanks Linda, for the link! mika.luoma-aho@pp.inet.fi


Anita C's March 20 reply to Phyllis' March 20, 2004 - Hi Phyllis, I was transplanted in April of 2000, and in April of 2001, one year later, I was taken off prednisone and have been off ever since. I also was taken off CellCept 2 years after transplant (due to low white blood cell count). The only immunosuppressant med I am on is Prograf (FK506) and I'm doing fine. abcox@triad.rr.com


Hope, March 20, 2004 - Hi, My post should have said "upper respiratory infections" instead of "urinary tract infections." I'm wondering if other people who take Vioxx have found that they are more susceptible to upper respiratory infections than they would be if they were taking ibuprofen and if people taking Vioxx have undesirable side effects that they don't have with ibuprofen or when they are taking something else for daily pain. Thanks, Hope. hlmcneil@earthlink.net
 
Jon's note: That was my mistake - sorry!


Ron, March 22, 2004 - Hi, I'm a 66 year old male who had a fem-fem bypass in 1999 for peripheral artery disease and about 3 months later was diagnosed with cardiomyopathy. I take 40mg of lisinopril and 20mg of aciphex (for GERD) once a day and 25mg of Coreg BID plus 8 other doctor recommended over the counter vitamins and supplements.
     Over the next 4 years, because of inactivity and the medications, I added about 50 pounds. In August of 2003, using a combination of the Zone, Atkins and calorie counting, I went on a diet. Progress was slow at first, about 2 pounds per month, but I am now losing 4 or 5 pounds per month. Four weeks ago I began having trouble sleeping. I now am getting between 3 to 5 hours of sleep per day, down from 8. On occasion, I can nap, but never for more then an hour or an hour and a half.
     Is there some correlation between the sleeplessness and the weight loss? Should I be concerned and see a doctor or should I be grateful, at my age to be given some extra time to enjoy life? Thanks in advance, Ron. Ron2L@insightbb.com


Robert, March 22, 2004 - Hi, Does anyone know if you can take your diuretic by injection? My stomach does not tolerate Edecrin or Lasix. hawkdog86@aol.com


Scott Brown's March 22 reply to Cheri's March 18, 2004 - Hi Cheri, I can only comment on the Coreg. This stuff makes you feel tired and lousy for several months, especially as you are working up to target dose. I can tell you that it does get better for most people. I think Coreg is a life saver. Recent studies are beginning to demonstrate longer life expectancy. Hang in there. Scott Brown. scott.brown@rogers.com


Alexandra, March 22, 2004 - Hi, I have received so many wonderful e-mails from people who understand how I feel. I want to thank everyone who has been giving me advice and just plain listening to me when I am having a bad day. I go in for a biventricular pacer on the 30th of this month. Hopefully, it will improve my EF like the docs are hoping it will. It's just hard for them to say because they do not know why I came to have CHF. I have been very fortunate to have had mostly good days for the past few weeks. I hope it can continue. Wish me luck and I pray for all of you each night. jakethesnake56@aol.com


Jim, March 22, 2004 - Hi, I was recently diagnosed with an ejection fraction of 40 to 45% through an echo test. I was stunned to find out that this put me at risk for heart failure. I am 42 (male), have recently competed in a couple of triathlons and have no history of heart failure in my family. I have not seen a specialist yet. The cardiologist I did see has recommended ACE inhibitor and Coreg. The only symptoms I seem to have are some discomfort in my chest and some strange muscle spasms. However, I must admit that my level of anxiety has risen dramatically and the above symptoms could be due to stress.
     I'm looking for suggestions. I have held off on beginning the meds until I get a second opinion from a heart failure specialist. Any help is appreciated. Should I start taking the meds? Can I exercise as usual? My stress echo and holter monitor results were normal. jgentrup@providentresearch.com


Jon's March 22 reply to Jim's March 22, 2004 - Hi Jim, Why did you have an echo in the first place? I can't tell you whether you should start meds right now or whether you can exercise "normally" or not. I don't even know what you consider normal exercise. <g>
     I can say some things in general and what I might do in your shoes as I understand them. I don't like the idea of starting both an ACE inhibitor and beta-blocker at the same time. It tends to make a person too tired, which discourages them from staying on the meds. I think if it were me, I would start the ACE inhibitor now, and wait on the beta-blocker till I had a CHF specialist's opinion.
     For exercise, see www.chfpatients.com/faq/exercise.htm for some info. If you are not having heart failure symptoms and your stress test showed no coronary artery blockages, I would think your usual exercise should be okay. However, I would suggest perhaps allowing some extra recovery time between exercises and between sessions until you see that CHF doc. Jon.


Andy Pritchard, March 23, 2004 - Hi, I'm now nearly 3 months past my diagnosis of CHF and cardiomyopathy, and have experienced one recurring sensation (for lack of a better word). I'm constantly aware of a "feeling" in my left chest - not really pain, not tightness. It may well be psychological, quite honestly. Has anyone else experienced something like this? andy@mrdatacorp.com


Janet's March 23 reply to Jim's March 22, 2004 - Hi Jim, Hopefully you'll find a good CHF doc that will schedule a Vo2max test for you. That should give you a good idea of your exercise tolerance and how efficiently your body is using oxygen. Jon has some info on this test and what the results mean on this site, just do a search.
     As a general reply to CHF and exercise, I resisted it a long time. My EF was 18% in the beginning and I felt really lousy all the time. My doctor said, "You have to exercise." Of course, I pushed back with, "I can't even get through the day and you want me to exercise?" Once I finally did start exercising on a regular basis it made me feel better than anything else I had done. I had to start really slow, but it helped a lot. Yes, I did give my cardiologist the "you were right" speech. :-)
     Jim I think you need more information before getting on meds, such as, is your reduced EF due to something like cardiomyopathy? That would be my guess based on your age and doing fine on the stress test. Good luck to you! janetca1@msn.com


Fred Durbin, March 23, 2004 - Hi, I am a first time visiter, referred by a VA nurse in West Palm Beach, Florida. I am 52 years old and had triple heart bypass surgery 4/03 that failed 3 times in 2 days. I now have cardiomyopathy and an EF of 23%. Today, I agreed to heart transplant program through VA. Has anyone had a transplant through their program? My only other health issue is acid reflux. I had to retire last July, applied for SSD and was approved in 56 days without a lawyer. Loss of employment, insurance, etc,..., led me to the VA for medical help after the 3 triple bypasses. So far, I've been well treated. fredkathydurbin@earthlink.net


Janet's March 23 reply to Ron's March 22, 2004 - Hi Ron, You mentioned taking supplements, but make sure your calcium/magnesium ratio is optimal (2:1). Try a Cal/Mag supplement that you take a bedtime with about 800mg of calcium citrate with 400mg of magnesium. Sometimes if you magnesium levels are low they will show up as insomnia. I'm assuming you've already tried the obvious like no caffeine after lunch, no sugar or simulants in the evenings or exercise.
     One other thing that I practice myself is getting out of bed when I can't sleep. Get up, read a book, watch tv or do something boring. Don't get back in bed until you're really tired. Lying in bed tossing and turning, watching the minutes tick off the clock is torture. janetca1@msn.com


Jim's March 23 reply to Jon's March 22, 2004 - Hi Jon, Thank you for the reply. I saw a cardiologist because I did have some "extra" or irregular heartbeats while sitting at my desk about a month ago. Also around that same time (during a workout), I had to stop due to excessive sweating. I thought it would be prudent to get it checked out, but didn't expect it to be this. I guess, in hindsight, there are some indications and the echo may be pointing to the cause. However, I've never actually seen the cardiologist who looked at the echo, instead seeing a nurse practitioner and p.a., although I have met with a specialist of the heart's electrical system in the same office. Nothing found there yet.
     I have had occasions once a year at most, where my heart beat extremely fast if I improperly warmed up. Anyway, it's all bit confusing. I had kind of decided to do the same thing you mentioned regarding the meds. Actually, the personnel I mentioned above gave me the choice of not taking any meds and coming back in 6 months.
     My resting heart rate is already around 60 and I fear the beta-blockers may cause me to pass out since they supposedly slow your heart rate further. My workout schedule generally consists of two 30-minute swims per week, weight workout once or twice per week, 10 to 15 mile bike ride twice per week and 2 to 3 mile runs each week. I generally feel much better on the days I run.
     My understanding is that my heart's EF rises during exercise and this explains why I feel better on the days I exercise. By the way, I am being told this was due to a virus, but cannot remember any serious viruses either. The p.a. said there was a slim chance the rapid heart rates may have caused some damage, but they have been very infrequent. So, I am trying to find a specialist in the area. Thanks for providing this forum. jgentrup@earthlink.net


Jon, March 24, 2004 - Hi everyone, I don't remember if this has been mentioned yet, but Heluva Good Cheese has their new low sodium cheddar ready to ship now. Contact them at www.heluvagood.com/contact_us.htm. ;-) Jon.


James, March 24, 2004 - Hi, I've heard a number of CHFers talk about having dry skin on their hands, specifically the skin around the knuckles and the back of the hand. I've fought with this for the last couple of years myself, usually only during the drier months of winter with forced air heating. It's been so bad this year that I've actually resorted to using rubber gloves when doing dishes. One thing I've never heard anyone mention is why do so many CHFers have the dry skin problem? jnj@spamcop.net


Jon's March 24 reply to James' March 24, 2004 - Hi James, I have always assumed it is due to diuretic use, water intake restrictions, and because we spend more time inside in those forced air heated homes. We run 2 humifiers all the time and it helps with dry skin and with static electricity. Jon.


Deb's March 24 reply to Jon's March 18, 2004 - Hi Jon, It is so interesting that you are experiencing these symptoms. This is the same thing my daughter has been experiencing that has kept her out of school since Christmas Break. As you said, her pain is not related to the weather in any way. She complains of the muscle pain but like you also said, it is the bone pain that gets to her and is the most painful. This seems interesting because it just seems too weird to not be related to the CM and it has to tie in somehow.
     She has been tested up one side and down another. She has had endocrine testing, immunology, etc. Her C-reactive protein keeps going up but they don't seem to be able to find the cause. One thing the nephrologist did suspect, we are still waiting for test results. Forgive me, at the moment I am having a brain fog and can't remember it exactly, but there is a condition called oxalosis I think, or oxylate something. This can cause buildup of oxalate crystals in the joints and cause pain. This is suspected because she is also low in cistine and high in oxalate. From what they told me, the blood sample has to be sent to Mayo to be tested. I don't know if you have a reason for your condition.
     The rheumatologist suspects the virus that caused Sam's DCM may be coming back for a second round, causing her pain. He tested her for about a dozen different viruses, but only CMV came up. He said that this doesn't mean one of the others didn't cause her problem, because with some of them, you have to be tested right away because after time they don't show up as active.
     I don't know yet what plans he has for treating her. We have an appointment next week. It is getting really old for her, she is tired of hurting all the time, as I am sure you are. It is also very hard running from this doctor to that doctor trying to figure out what is wrong. I know I didn't offer you much help here. I just wanted to you to know that there is somebody experiencing the same thing as you.
     Please post anything you find out and I will do the same. Maybe between the two of us, we can figure out what is going on with both you and Sam. Deb. mommajayne@hotmail.com


Jacky, March 24, 2004 - Hi, Lucerne make an excellent sliced low salt Swiss cheese. It is not advertized as such but if you read the ingredients, sodium is lower than other brands. jackymwb@earthlink.net


Janet's March 24 reply to James' March 24, 2004 - Hi, Regarding skin problems of the hands, I have allergic contact dermatitis and it's very common. It's basically something in the environment that irritates your hands and you end up with scaling on the fingers and dryness. With so many chemicals and fragrances in everything it's like looking for a needle in a haystack.
     I work around the problem by wearing gloves when washing dishes or using any cleaning products. I draw the line at wearing gloves with shampoos! That just isn't practical. When my hands get really bad, I go to the doctor and get something called triamcinolone acetonide ointment, which is a topical steroid, and a couple of days later it's fine.
     Also, make sure you house is humid enough as Jon said, and drink enough water. Try a mild hand soap like Dove. Also, getting enough omega-3 oils in your diet is helpful for any skin problems. janetca1@msn.com


Michele, March 25, 2004 - Hello, I found this web site doing research based on results of studies done during my recent ER observation stay. It's dawning on me that my problem is more serious than I believed or expected, and the symptoms recently exhibited were precursors to the latest event.
     I am also a cancer patient, currently on chemotherapy. Having suffered through several incompetent oncologists, I don't wish to travel the same route with cardiologists, especially with the cancer complication. Is there anyone in the Orlando or central Florida area with a CHF specialist with whom they are satisfied and would recommend?
     Thank you in advance for any recommendation or advice. Michele. mmj04orlando@aol.com


Debi's March 25 reply to James' March 24, 2004 - Yep, We have that at our house as well. I always thought it was connected to the diuretics as well. We have found something that helps. I do sell this product, after I found out what it did for Sam's skin, but because I don't want everyone to think I am posting this to get some business, I won't accept orders from here. You should contact a Mary Kay person and ask for the Satin Hands kit.
     Depending on how bad your hands are, there are a couple of ways to use this. You can use the whole kit, the whole kit at one point in the day and the extra emollient night cream at night, or just the extra emollient night cream. You don't have to just use it at night. If your hands are really bad, put some water on them, not a whole bunch, just to moisten them, and then put the emollient cream on top of it and it will seal in this moisture.
     Mary Kay ran across a man who was elderly, yet his hands looked really young and were as soft as a woman's. She asked him what he did and he was a tanner. He made his own tanning cream, so she bought it off him. Something to try. Like I said, this has done wonders for Sam's hands and she also has a problem with her feet, knees, elbows and face; we use it everywhere. If you just want to use the extra emollient cream, don't let the person tell you that you have to purchase the whole set, you don't have to! Deb. mommajayne@hotmail.com


Kate, March 26, 2004 - Hi, I have been on meds for CHF for 10 years and suddenly my hair has gone dull and is falling out in volume. I have not had any med changes other than a round of antibiotics for dental work. I have not been party to any sudden introduction of stress and have never used hormones of any kind. I did the bald bit with chemo and have no desire to repeat the experience. I don't seem to have any other symptoms of anything unusual. Any thoughts, folks? tothymecottage@frontiernet.net
 
Jon's note: I hope people reply. Meanwhile, there are posts about this in The Archives. Meds side effects can happen after many problem-free years on them - I know.


Ralph Moon, March 26, 2004 - Hi, I just found this site and this is the first time for me to post. I have just read most of the posts and I was astounded at the number of CHF patients with a complaint of muscle and joint pain in the legs. I have been experiencing these symptoms for over a year along with weakness and lack of energy. It so has become hard to walk that I usually need a wheelchair to go more than a few feet, and stairs are almost impossible.
     My doctors have banned a number of analgesics including NSAIDs like Celebrex and ibuprofen. The one I now have currently is hydrocodone, which seems to help a little although it has some unpleasant side affects. This problem seems to be a symptom of CHF no one has ever mentioned to me. I thought I was unique.
     The multiplicity of probable causes suggested on this list make it almost a hopeless task to get any definitive information. I thank all those who have discussed it for the enlightment. If somebody comes up with a sure fire cure to get rid of the pain, I will be first in line. Ralph. rmoon75@ida.net


Hope M's March 26 reply to Ron's March 22, 2004 - Hi, I tried Coreg for awhile but I had a great deal of trouble sleeping. Maybe when you lost weight, the Coreg started to affect you more. Anyway, I now take a different beta-blocker called Toprol-XL, and I sleep well. hlmcneil@earthlink.net


Hope M's March 26 reply to Andy's March 23, 2004 - Hi, I've always been aware of my heart beating, and I thought everyone was but my husband says no, most people aren't. I'm also aware of PVCs (preventricular contractions) and often my heart just feels "heavy." Over 9 years of having CHF, none of these feelings of awareness have been indicative of bad things on the way! I'm glad for that! hlmcneil@earthlink.net


Beckie's March 27 reply to Kate's March 26, 2004 - Hi Kate, I have been on Coreg, Aldactatone and Altace since October and my hair became very dull and started falling out like crazy. The doctor told me it probably was from the meds. I just had it cut yesterday and the hairdresser said it was the first time none came out since I started the meds. Hopefully my body is adjusting. Good luck to you! Beckie. rebekah.hanks@bsd.k12.de.us


Teresa M, March 27, 2004 - Hi, This is my first time posting. I just need to "talk" to someone. I fainted at the wheel 5/29/03. I have lots of PVCs. The electrophysiologist wanted to ablate a "node" in my right ventricle. I ran the gauntlet of preliminary tests, which revealed cardiomyopathy in the left ventricle much to everyone's surprise, as I was a very fit cyclist. I am now on Coreg 6.25mg BID for the cardiomyopathy and have an implanted loop recorder to catch whatever caused the syncope. Personally, I think the faint was a gift that got me to the cardiologist.
     Up till now, I have been very positive and hopeful. I am still grateful for God's blessings but recently am tired, sad and confused. My symptoms are mild - sometimes I feel like I need to take a deep breath, my PVCs go wacky when I lie on my left side, and I have deep bone pain in my hips. Family and friends seem to steer clear of the subject, but I know they are afraid as well. I was always the strong one. Thanks for reading. I feel better just typing this into the unknown. Peace and all good, Teresa. zmoragat1@sutterhealth.org
 
Jon's note: The unknown understands.  ;-)


Janet's March 27 reply to Kate's March 26, 2004 - Hi Kate, The first thing that popped into my head was thyroid disorder. Next time you are at the doctor's, have them do a full thyroid panel and make sure everything is okay. Hair loss is a big symptom of hypothyroid.
     Also, make sure your protein intake is adequate. Generally it's about 1/2 in grams of your body weight in pounds. So if you weigh 120 lbs, you'd take in 50 to 60 grams of protein a day. If you are not getting enough, you'll see the effects in places like your hair, weak fingernails and overall fatigue.
     You didn't give your age but if you are over 35, watch for those fluctuating hormone years. ;-) Hormone flucuations can also be tied into thryoid issues. There are saliva hormone tests you can do over the counter to find your hormone status if you think that may be the issue.
     Last but not least, you may need those Omega 3 oils in your diet. I'm sounding like a broken record on this I know. Also, pick up just a little GLA from something like Evening Primrose or slow cooked oatmeal. Good luck! Janetca1@msn.com


Janet's March 27 reply to Ralph's March 26, 2004 - Hi, I wonder if those with joint and bone pain have tried glucosamine? janetca1@msn.com
 
Jon's note: I have taken 1500mg daily for some time - no change in occasional bone pain.


Katherine H's March 27 reply to Kate's March 26, 2004 - Hi Kate, My hair started doing that and my hairdresser said you have got to ask your doctor about this - it was many years ago. It turned out my thyroid was underactive so I take a pill every day and my hair is back to normal. I had it happen again in the last few years and my dosage needed to be adjusted. I hope it's as simple as that for you too! kholian@msn.com


Sandy, March 27, 2004 - Hi, For my leg pain the doctor has me taking Osteo Bi-Flex with glucosamine and chondroitin complex plus MSM. It is over the counter and is helping come. I hope this might help someone. shallacy@mo-net.com


Alexandra, March 27, 2004 - Hi, Some of you have read my previous posts, but I have a question. I was born with a congenital heart defect, had open-heart surgery in 1981, and was fine until 2002. I had a pacer implanted as a result of a heart rate of 37 beats per minute. I had all kinds of problems and sicknesses from June of 2003 when I was diagnosed with IDCM until January of 2004 when I was diagnosed with CHF.
     I am doing everything the docs tell me. I have a CHF specialist and a pacemaker specialist. I am getting a biventricular (CRT) pacemaker on the 30th. I am taking Digitalis, Lasix, potassium, lisinopril, Xanax, Wellbutrin, Darvocet and Synthroid. We have a 3 year old son. I have followed the low-sodium diet, restricted fluids, exercise regularly, and take all meds exactly as directed. I totally changed my life.
     I never did anything healthy before this happened. I feel so much better than before and we are hoping this new pacer will help also. My last EF measurement was 45%. I desperately want to have another child. My husband would like one also but not at the expense of my health. I have been told to just wait for now. I was wondering if anyone knows if this could be possible.
     I love my son so much and cannot bear the thought of leaving him too early. Since I have done so much to improve my health and it has worked extremely well, maybe there could be a chance. I just turned 34 on the 20th and I thought I had come to terms with the fact that I may never have another child, but it is in the back of my mind constantly. My sisters are having kids left and right.
     Has anyone ever known someone that has overcome such a problem? Or am I just to face facts that my family will not get any larger. Don't get me wrong, I love my family, but always thought I would have 3 to 4 kids and sometimes it is heartbreaking to think about. I know I should just be grateful for what I have and enjoy the time I do have. I know I seem selfish, but I want my son to have a brother or sister. Am I being irrational and selfish? Don't sugar coat it. Just someone tell me if I am being unreasonable or that there may be a chance for more improvement as I continue to follow docs orders. Thanks!
     Thank you to everyone who has helped me to get to this point. This is the best place I have ever found. I have made true friends. jakethesnake56@aol.com
 
Jon's note: If you're worried about "leaving" your living son, wouldn't the worry just vastly increase with the added health risks of a second pregnancy and child?


Paul D's March 27 reply to Kate's March 26, 2004 - Hi Kate, Has anything changed in your diet in the last 6 months? Have you moved or changed something else in your life or regular routine? Jon is right that sometimes side effects show up very late, but it could also be something non-drug-related. Maybe you're missing some nutrient you used to have, for some reason? I'm just guessing and trying to imagine possibilities. I hope you can figure it out! Good luck. therealpauld@netscape.net


Jacky's March 27 reply to Alexandra's March 27, 2004 - Hi, This is just my two cents but I agree with Jon. I wouldn't risk leaving a child you already have and love, hoping to survive another pregnancy and birth. It must be very hard to see everyone else having babies, but I think you have to concentrate on being there for Jake. jackymwb@earthlink.net


Alexandra's March 27 reply to Jon's March 27, 2004 - Hi,You are absolutely right. I have thought about it all night and I am putting the idea of having another child away indefinitely. I need to concentrate on Jake. We are going to the park today. I feel good today. Thank you. jakethesnake56@aol.com


Janet's March 27 reply to Alexandra's March 27, 2004 - Hi Alexandra, You have just described the heartbreak for so many women here with PPCM. PPCM is really just a form of cardiomyopathy that shows up during or shortly after pregnancy. We were young, usually very healthy and some in our first pregnancy. Many, including myself, never thought they would have only one child.
     The general medical feeling on this is that once you get cardiomyopathy, you shouldn't get pregnant. Have some people done it successfully? Yes, but it's a big risk. It's not just about weight gain, it also has effects such as your blood volume greatly increasing. That is a whole lot of stress for a weak heart. Some of the statistics I've seen with PPCM said our mortality rate is as high at 50% on a second pregnancy; this was from a few years ago and more studies may be available now. Basically what I'm saying is that I completely understand your desire to have another child, but you may be putting your first child's mother in jeopardy. Is it really worth that risk?
     Here's a web site for you: www.ppcmsupport.net/. They have an entire message board called "future children." These are women exploring the option of a second pregnancy after cardiomyopathy and other options such as adoption and fostering. Janet. Janetca1@msn.com


Janet's March 27 reply to Teresa's March 27, 2004 - Hi Teresa, I can completely understand what you are saying about family and friends steering clear of the subject. This was my experience as well and it is what I now call the "elephant in the living room" syndrome. People come over and "pretend" it's just not there. From their perspective most people feel like they don't know what to say or they are afraid they will upset you so they just avoid the topic. Before my own illness, I had friends with cancer and was guilty of the same behavior.
     What I would suggest to you is that you take some of your closest family members and friends aside and explain to them that you are okay with talking about this and that it may actually be therapeutic for you. You need to find someone who is willing to listen because you'll probably be running through a lot of emotions for awhile. You don't necessarily want a person who is going to keep trying to talk you off the ledge, so to speak - you need someone willing to sit on the ledge with you and witness and understand your feelings. It's okay to have negative emotions about this. Let's face it, we all haven't gotten fired from a job, we all have heart problems. It doesn't get much bigger than that, does it?
     I'm 4 years into this and it was only in hindsight that I realized that after my diagnosis I cycled through all the stages of grief over a period of many months. These stages are denial, anger, bargaining, depression and finally acceptance. I would encourage you to realize this is normal and not get too stuck in any of the emotions. Emotions such as anger won't serve your healing process. You want to end up at acceptance/surrender and it may take 2 months or 20 years. Prior to my illness I repressed every feeling I had. I was the strong one. Now, I'm just the opposite and I'm a much happier person. Now, I'm not so sure my husband is happier. ;-)
     By the way, I have also experienced of a lot of PVCs on when lying on my left side and I have no idea why. Best of luck to you, Janet. janetca1@msn.com


Jack D's March 27 reply to Sandy's March 27, 2004 - Hi Sandy, No real doctor (like an MD) would tell anybody to take MSM. MSM is a complete and total waste of money. MSM is just DMSO with an extra oxygen molecule. It's basically sulphur and methane - or matchheads and farts. One is real cheap and the other is free. maddjak@hotmail.com


Hope M's March 27 reply to Alexandra's March 27, 2004 - Hi Alexandra, I have 6 children and never had any problems. When I was 3-1/2 months pregnant with our seventh child, I had a miscarriage and then started hemorrhaging when I got to the doctor's. It was so sad to lose the baby. About 5 months later, I miscarried again and hemorrhaged severely at home and on the way to the hospital. I was treated as a trauma patient. I remember each time telling the doctor, "Don't let me die! Don't let me die! I have 6 children to take care of!"
     This was all a precursor to finding out that my mitral valve was severely regurgitating and that I needed heart surgery, and then I developed CHF. I think I lost those two children because my heart could not support me and a baby at the same time.
     I went through a period of grieving because I could not have any more children. I know that, having 6 children already, it may seem strange that I felt so sad about not being able to have any more, but those were my true feelings.
     I am very happy however, that I'm still around to see my children grow up. Now at the age of 51, I have 6 adorable grandchildren and one on the way. I continue to feel that God has His hand in all of this and I pray and remember that He is really the one in charge. I hope sharing my experience is a little helpful. Sincerely, Hope. hlmcneil@earthlink.net


Kate, March 27, 2004 - Hi, Thanks everyone for the hair loss suggestions. Thyroid came to my mind as well and I'm sure my doc will check it out when I see her in April. Menopause has pretty much been a non-issue for me. I had my ovaries shut down when I was 45, have had no problems since, and now that I'm 55 I had hoped I had pretty much finished with that phase.
     I am taking it all with my usual good humor. I start the day with a body check and a good laugh. I make sure my arms and legs are still attached, that my head is still sitting on top of my neck, and that my fingers and toes all wiggle. If all is in order, I tell myself a little hair on the pillow case simply does not fall into the major catastrophe category. I've also decided it is a good excuse to treat myself to a more expensive shampoo instead of the 69¢ a bottle kind I usually buy.
     Like I said, I've been bald before and as I recall it is pretty darn comfortable on a hot August day. I'll let you know what the doc finds out, if anything. Kate. tothymecottage@frontiernet.net

Jacky's March 29 reply to Kate's March 27, 2004 - Hi Kate, I love your post, it makes me feel much better about hair loss! Maybe I can even learn to laugh about it! Most of the drugs I take list hair loss at about 2% but then I am always in the wrong percentage. Of course age (very) doesn't help. Let me know if you discover a magic formula. Jacky. jackymwb@earthlink.net


James, March 29, 2004 - Hi, An article of interest regarding reshaping of the left ventricle can be seen at http://www.msnbc.msn.com/id/4607822/. jnj@spamcop.net


Beckie's March 29 reply to Janet's March 27, 2004 - Hi Janet, I am 55 years old. I had thyroid cancer at age 21 and have no thyroid. My blood levels are checked frequently. In fact, there is some thought that the thyroid med I have taken for 33 years may break down in such a way as to cause cardiomyopathy. I have been taking Armour thyroid, 5 grains daily. I also take all the supplements you list, as I follow Jon's Nutrient Stew. I think there are times when Coreg or other meds can cause hair to fall out but it is not permanent. rebekah.hanks@bsd.k12.de.us


Kim, March 29, 2004 - Hi, I just needed to write something today. I was sick most of last week. I have a bad case of gastritus and it wiped me out for several days. I am so sick of this illness. My doc tells me that I will get better, and I have. My EF was 20% and now its 40%, 4-1/2 months later. I still have horrible problems with fluid retention and SOB. No one has a real good reason why - almost always my low blood pressure is to blame.
     I have stopped taking Coreg and only take 2.5mg Zestril. My boss (I am suppossed to work 20 hours per week) expressed concerns today about my absences last week. I am just soooo frustrated and angry. I want to have a baby but I haven't had the chance. I'm 37 now and guess I just have to accept that.
     I am sorry I am going on, but gaining 4-1/2 lbs yesterday put me over the top today. Thanks for listening. Good luck all. kwilczewski@aol.com


Myrtle C, March 29, 2004 - Hi, I talked to my psychiatrist who is a psychopharmacologist about how Neurontin seems to help me with some symptoms of CHF. He explained that the heart and brain are very interconnected and meds such as Neurontin (an antiseizure drug) could help me feel less strain and fatigue due to less anxiety. This man has been God's gift to me. He knows how these meds work and why many of the clinical trials done on meds aren't done as well as they should be. He said that often trials are not done on patients who have a number of health problems and take numerous drugs. When the trials are over, things show up in "real people" that were never expected and how often the media tout clinical studies which they have not studied well enough. omieof3@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 Jon C.

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