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

Jon 5-17     quote for the day
 
Alice 5-17     thank you for e-mails
 
Roger 5-17     trip planning, chat room
 
Joanne 5-17     does menstruation affect heart failure?
 
Sandy's 5-17 reply to Jack D's 5-12     I like your quotes
 
Linda Oline's 5-17 reply to Valerie R's 5-14     traveling with implanted device
 
Elka's 5-17 reply to Vickie's 5-13     St. Vincent's, familial cardiomyopathy & more
 
John's 5-17 reply to Valerie R's 5-14     traveling with ICD
 
Katherine H's 5-17 reply to Valerie R's 5-14     traveling with implanted devices
 
Lisa's 5-17 reply to Valerie R's 5-14     air travel with implanted device
 
Marly's 5-17 reply to Valerie R's 5-14     traveling with ICD pacemaker
 
Jon 5-18     another quote
 
Valerie R 5-18     thank you everyone
 
James' 5-18 reply to Lori K's 5-14     about recipe
 
Cary Deen's 5-18 reply to Linda O's 5-14     I'll report on it soon
 
Carla's 5-18 reply to Joanne's 5-17     periods and heart failure
 
Lori K's 5-18 reply to Joanne's 5-17     periods and heart failure
 
Cristina L 5-18     seek Mexiletine experiences
 
Jon's 5-18 reply to Cristina L's 5-18     some Mexiletine info
 
Roger 5-18     am enjoying my vacation
 
Jack D's 5-19 reply to Cary Deen's 5-18     please find name of device
 
Jon 5-19     and again
 
James 5-19     cooking stirfry and crumbles
 
Lori K 5-19     high sodium, chloride levels - anyone?
 
Steve P 5-19     fatigue, cardiac rehab questions
 
Jon 5-21     anudder quote
 
Lana V 5-21     edema question
 
Scott Brown's 5-21 reply to Lori K's 5-19     diuretics, blood pressure and more
 
Carrie 5-21     can't change my life style - seek input
 
Cary Deen's 5-21 reply to Linda O's 5-14     anodyne therapy
 
Sheryl C's 5-21 reply to Steve P's 5-19     cardiac rehab is a good deal
 
Robert 5-21     what do I do now?
 
Jon 5-22     Medicare link, quote
 
Roger G's 5-22 reply to Robert's 5-14     shortness of breath, meds
 
Roger G 5-22     is anyone else losing their teeth?
 
Elizabeth K's 5-22 reply to Steve P's 5-19     cardiac rehab
 
Paul D's 5-22 reply to Carrie's 5-21     some suggestions
 
Jeff B 5-22     intro, really like this site
 
Cristina L's 5-22 reply to Robert's 5-21     get a new cardiologist
 
Jon 5-25     moving slowly
 
David Wilson's 5-25 reply to Lana V's 5-21     heat's effect on me with CHF
 
Lane 5-25     got my Disability & more
 
June's 5-25 reply to Roger's 5-22     losing your teeth & Coumadin
 
Alexandra 5-25     article on CRT pacemakers
 
Roberta 5-25     seek CHF doc in Atlanta
 
Lori K's 5-25 reply to Scott Brown's 5-21     what if your CHF doc is far away?
 
Holly 5-25     can you get health insurance with CHF?
 
Roberta's 5-25 reply to Carrie's 5-21     coping with heart failure
 
Linda O's 5-25 reply to Carry Deen's 5-21     thank you for anodyne therapy url
 
Roger 5-25     back from vacation
 
Neville 5-25     seek thoughts or encouragement
 
Carla's 5-25 reply to Carrie's 5-21     we may have things in common
 
Laurie P 5-25     questions - back pain, stomach edema
 
Lydia Moore's 5-25 reply to Roger G's 5-22     tooth problems
 
Jill M 5-25     is it dangerous to stop diuretic?
 
Jon's 5-25 reply to Jill M's 5-25     stopping diuretic
 
Catherine L 5-25     cinnamon and diabetes risk
 
Don C 5-25     transplant anniversary
 
James 5-25     potassium chloride question
 
James' 5-25 reply to David Wilson's 5-25     heat and activity experience
 
Shelby 5-25     where can we go for help?
 
Jon 5-26     yep - another quote
 
James' 5-26 reply to Jon's 5-25     heart class
 
Steve's 5-26 reply to Roberta's 5-25     doctor recommendation
 
Larry's 5-26 reply to Holly's 5-25     getting health insurance
 
David Wilson's 5-26 reply to Shelby's 5-25     some suggestions & ideas
 
Andy 5-26     seek ideas about worsening symptoms & PVCs
 
Catherine L 5-26     seek ideas about worsening symptoms & more
 
Patricia's 5-26 reply to David Wilson's 5-25     hot temperature & CHF
 
Patricia's 5-26 reply to Jon's 5-25     retaining fluid despite good EF
 
Alexandra's 5-26 reply to James' 5-25     exertion often feels good
 
Diane's 5-26 reply to Carrie's 5-21     my CHF experience
 
Vicki 5-26     please pray for my brother
 
Valerie R 5-26     Coumadin & losing teeth, heat & humidity
 
Anita C's 5-26 reply to Don C's 5-25     congrats on transplant anniversary
 
Angela 5-26     some good news, seek Las Vegas CHFers
 
Nancy S 5-26     how often should I see the doc?
 
Carla 5-26     seek CoQ10 information
 
Tom S 5-26     losing teeth
 
Jack D 5-26     Genesis
 
Jacky 5-26     leg weakness questions, please respond
 
Jacky 5-27     addition to last post
 
Jon 5-27     acetyl-L-carnitine on sale & more
 
James' 5-27 reply to Alexandra's 5-26     attitude
 
James' 5-27 reply to Carla's 5-26     CoQ10
 
Jon's 5-27 reply to Carla's 5-26     CoQ10
 
James' 5-27 reply to Jacky's 5-26     I have the same problem
 
Carol 5-27     where is caregivers' forum?
 
Carolyn 5-27     seek CHF doc near Anderson, South Carolina
 
Jeff B 5-27     seek red blood cell count info
 
Patricia's 5-30 reply to Jacky's 5-26     numbness and pain in extremities
 
Jon 5-30     quote for the day
 
James' 5-30 reply to Jon's 5-27     L-carnitine
 
Jon's 5-30 reply to James' 5-30     L-carnitine and more
 
Jill M 5-30     question on Social Security benefits
 
Scott Brown's 5-30 reply to Jeff B's 5-27     questions to ask your doctor & more
 
Carolyn Knight 5-30     does CoQ10 help a-fib?
 
Myrtle C 5-30     is this a good supplement for me?
 
Myrtle C 5-30     prayer request, Coreg and depression
 
Chelsie 5-30     update on my heart
 
Lori K's 5-30 reply to Jeff B's 5-27     blood cell counts
 
Roger's 5-30 reply to Carla's 5-26     CoQ10 experience
 
Roger's 5-30 reply to Jon's 5-27     prescription L-carnitine
 
Donna V 5-30     tramadol question
 
Jon's 5-30 reply to Donna V's 5-30     tramadol experience
 
Janet 5-30     seek MyoVive info
 
Jon's 5-30 reply to Janet's 5-30     MyoVive info
 
Jon 5-31     quote for the day, new recipes
 
Sandy 5-31     sharing new information
 
Roberta's 5-31 reply to Steve's 5-26     doctors & insurance providers
 
Roberta 5-31     my sleep study experience
 
Donald MacLean 5-31     I found low sodium chicken broth
 
Tim Pauly's 5-31 reply to Jon's 5-25     don't feel as good as docs say I should
 
Carolyn Knight 5-31     seek people waiting for heart transplant
 
Carolyn Knight 5-31     need some encouragement or suggestions
 


Jon, May 17, 2004 - Hi, It's been a rough day today but here's Jon's quote for the day: "Mankind, when left to themselves, are unfit for their own government." George Washington Jon.


Alice, May 17, 2004 - Hi, Thanks for the personal replies about constrictive pericarditis. It is great to hear from someone with encouragement first thing in the morning, after a horrendous sleepless, breathless night. Alice. Truffles92110@yahoo.com


Roger, May 17, 2004 - Hi, I have this next week off so hopefully I will be able to go to the chat room Monday. It sounds like a good time is had there. We are going to Canada on Wednesday and are going to stay at a bed and breakfast. They said whatever I want for breakfast, they will try to get for me after my wife told them of my low sodium diet. Also, they thought there are restaurants in the area that have low sodium items on the menu. I said if not, I'll go to a grocery store and go back to the bed and breakfast, and cook my own stuff. I'm going to pack my own bread and butter, and with all the meds and my cod liver oil and testosterone that needs refrigeration, along with my meter and test strips and lancets, I will have a fun time. rkharmony@highstream.net


Joanne, May 17, 2004 - Hi everyone, Chelsie seems to be more tired and more symptomatic during her menses. Has anyone else experienced this and is there anything that has helped with these symptoms? The last couple of times I thought that maybe she ate or did something differently but now I am pretty sure it is directly related to menses. I would appreciate any advice. mjcb@northstate.net


Sandy's May 17 reply to Jack D's May 12, 2004 - Hi, I like yours better too! It's too bad they only show up sporadically (doesn't daily mean every day?). sandy4014@aol.com


Linda Oline's May 17 reply to Valerie R's May 14, 2004 - Hi Valerie, I went to Las Vegas from Kansas City and back. They looked at my cards and sent me to a different place to have a lady check me manually. I also had to take off my shoes. They were very respectful and kind to me. Linda Oline, age 64, EF 25%. lnoline@hotmail.com


Elka's May 17 reply to Vickie's May 13, 2004 - Hi Vicki, My family too is taking part in research for cardiomyopathy in families by the Victor Chang Research Institute. My mother had DCM, which I also was born with. Nine months ago I had a heart transplant at St Vincent's hospital and I am presuming that if your brother is waiting for a transplant, it would be with St Vincent's, since your family is participating in research by the institute.
     I am from Adelaide and was taken to St Vincent's by air ambulance, where I was only supposed to stay a few days to be assessed and then come back home to wait for a heart. Instead I was told that I had to stay in the hospital for the whole waiting period. Luckily, it was only 6 weeks. I was 17 years old at the time. Six months post-transplant I started first year at university.
     I continue to fly up to Sydney for checkups and biopsies. The transplant doctors are wonderful at St Vincent's and it is one of the best hospitals in the world for heart and lung transplants. I wish you the best for you and your family. Transplantation can be a very daunting process, but the doctors and nurses are always willing to answer any questions. Feel free to e-mail me anytime and ask me any questions you may have about my experience with St Vincent's or transplant in general.
     Take care! I hope the wait won't be too long for your brother. Elka. peel416@mail.bigpond.com


John's May 17 reply to Valerie R's May 14, 2004 - Hi Valerie, I travel frequently with an ICD/pacer and avoid the security detectors and wands by requesting a hand search. It takes a lot longer but it works I recall once entering a courthouse and the sheriff used a wand before I could say anything. I definitely felt it when she went over my ICD. Good luck and keep moving. johndavidw@sbcglobal.net


Katherine H's May 17 reply to Valerie R's May 14, 2004 - Hi Val, I have traveled several times with a biventricular pacer and had absolutely no problems. In the airport where I live they have a sign that if you have a pacemaker you need to let the security people know. I have done that and they pull me aside and do a hand pat - no wand over the device.
     My pacer nurse told me I didn't even need to do that; to just go through the device normally. That is what I now do because when they pull you over, they separate you from your purse and carry-on luggage, and since I often travel alone there is no one watching all that and I have a great fear someone could just pick up my purse and run with it. I now just go through normally and say nothing to anyone and have no problems. If I did, I'd just pull out my Medtronic card and explain about the pacer. I don't think that would be a problem.
     I have no problems coming back from airports all over, so you may be able to just walk through the security the same as everyone else - ask your heart doctor. Have a great trip! kholian@msn.com


Lisa's May 17 reply to Valerie R's May 14, 2004 - Hi Valerie, My dad has had a Guidant ICD since January of 2001. Last October, I sent him and my mom on a little vacation to Florida to visit my uncle. They flew USAirways out of Pittsburgh. When we got to the airport, I told them of my dad's ICD and he showed his card. The security officer took my dad through security via the "handicapped" lane and they took him into a separate room and patted him down by hand. My mom went through the normal security procedures. He had no problems at all and everything went smoothly in Florida as well. They were all very nice and understanding! Good luck and enjoy your trip! lzeigler@marsbank.com


Marly's May 17 reply to Valerie R's May 14, 2004 - Hi Valerie, I have an ICD/pacer that was recently upgraded to a biventricular one. I traveled a lot by air during the past month and will do so again this week. I did not pass through the magnetic scanner and never allowed the hand wand to come near me. I always request a hand check. mcardenas@pacific.net.ph


Jon, May 18, 2004 - Howdy-doo, Here it is: "Society is now one polish'd horde, Formed of two mighty tribes, the Bores and Bored." Lord Byron Jon.


Valerie R, May 18, 2004 - Hi everyone, I just want to thank everyone for all your advice about travel with a pacer. You've all made me feel much better. vgrogers@aol.com


James' May 18 reply to Lori K's May 14, 2004 - Okay Lori <lol>, but I'll have to send it off-board as it's just too much for a single post here! jnj@spamcop.net
 
Jon's note: That depends on how tasty it is!


Cary Deen's May 18 reply to Linda O's May 14, 2004 - Hi, The doctor has given me a ticket for a month's therapy. After that time he said I would be taking a device home so that I may treat myself. The person, so I'm told by the podiatrist, who invented this device won an award. Tomorrow morning I'm going to stop by the therapy center and schedule an appointment to start in 3 weeks. This week I need for myself and next week I am scheduled to see a CHF specialist for the first time. I'll learn more about their therapy, the device, and the program. I'll report back when I learn more. Take care. cdeen10@bellsouth.net


Carla's May 18 reply to Joanne's May 17, 2004 - Hi, There is definitely some sort of connection because I start feeling really crummy a few days before - my heart feels like it's doing flip-flops and I swell more. My docs aren't sure if there's a connection because most of their patients are past that point. However, your hormone levels, heart levels, etc,..., are all connected! Just hang in there! carla@cnbt.com


Lori K's May 18 reply to Joanne's May 17, 2004 - Hi Joanne, I have found my cardiomyopathy symptoms to be worse just before and during the first 3 to 4 days of menses. My doctor thinks it is due to the low estrogen/progesterone and maybe even more to some fluid retention. Sometimes I add 3 to 4 pounds and then take it off a week after I start. Both make sense to me. Take care. Lori. thegoof86d@aol.com


Cristina L, May 18, 2004 - Hi, I have a question. I have had peripartum cardiomyopathy and was diagnosed with CHF in July of 1997. I have been on various medicines including beta-blockers, ACE inhibitors, etc. My EF is now 40%. I was recently experiencing problem with PVCs which were making me crazy and out of breath. My cardiologist put me on Mexiletine. I was only on Mexiletine for 3 weeks and was extremely dizzy and nauseous. After the first week I cut down to one dose but that still didn't help. I lost 11 lbs during that time, which being small and petite is a lot for me. I have stopped the Mexilitine and still feel dizzy.
     My cardiologist now seems to think that I have vertigo and put me on Meclizine, which helps people with vertigo and motion sickness. I also had my ears checked and had a hearing test. That doctor now wants to do a CAT scan with dye on my head. I'm not sure I want to do that.
     My question is: Has anyone been on Mexiletine and have you experienced these problems? Jon, have you heard of this happening and will it go away? I'm desperate! I hope everyone is well. clisa@optonline.net


Jon's May 18 reply to Cristina L's May 18, 2004 - Hi Cristina, The following is just what a web search turned up. I have not heard of personal experiences that might help you. I am sorry.
     Forty percent of trial patients on the drug dropped out due to adverse side effects. These include - you guessed it - nausea, dizziness, unusual or extreme fatigue, vomiting, stomach pain, tremor, blurred vision, numbness or tingling in hands or feet. You are supposed to take it with food or an antacid. The higher the dose, the worse the side effects.
     If you have right-sided CHF, the dose should be smaller because it is mainly processed by the liver instead of the kidneys. Reduced liver function was seen in some CHFers taking the drug in trials. The drug does mildly reduce heart function, but the effect is quite small and usually only shows up in people with severe heart failure.
     There is a black-box warning on the drug as follows:

Considering the known proarrhythmic properties of Mexitil and the lack of evidence of improved survival for any antiarrhythmic drug in patients without life-threatening arrhythmias, the use of Mexitil as well as other antiarrhythmic agents should be reserved for patients with life-threatening ventricular arrhythmia.

How long have you been off Mexiletine? The symptoms should fade, as far as I can tell, but I am not sure how long it takes. Could your dizziness be from excessive PVCs? It is one of the most common effects of PVCs, along with shortness of breath. I hope an electrophysiologist is treating you for this. Jon.


Roger, May 18, 2004 - Hi, It seems funny not to have to go to work, but I am enjoying being home on vacation. I took a walk this morning and after the walk checked my blood pressure, and it was 71/44. I didn't feel dizzy or anything. I haven't had a low like that in a long time. My pressure normally run 80/50 or 90/60. I liked the chat room last night. I am usually getting ready for work at that time so am not able to make it. rkharmony@highstream.net


Jack D's May 19 reply to Cary Deen's May 18, 2004 - Hi Cary, We would like to know the name of this device. Please ask the therapist, doctor or whatever to write it down so you can post it for us. Thanks. maddjak@hotmail.com


Jon, May 19, 2004 - Hi all, Here it is again, that old quote for the day: Asked once why the United States needed more nuclear missiles when it already had the power to reduce the Soviet Union to cinders, he replied, "I want to see the cinders dance." Curtis LeMay Jon.


James, May 19, 2004 - Hi, I have w basic dishes I make on a regular basis: the stir fry and the crumble. A stir fry is simple to start. First, get yourself a wok, preferably the type you use on the range rather than the electric ones, and some good wooden utensils that include a wooden spatula.
     Now that you have the cookware, the next step is to do the cooking! First off, you'll want some kind of broth to cook the rice in. I typically cook up a chicken with a couple of onions, some garlic plus lots of pepper of course, and take that broth. When you have your broth, cook up 2 cups of rice. Using 2 to 3 tablespoons of olive oil, sesame oil, or no salt added butter or margarine, sauté 2 to 4 cloves of garlic in your wok.
     Next add the rice to the wok - it will soak up the oil and butter right away but that's okay, just keep stirring it. After about 5 minutes you can add a few splashes of Angostura soy sauce (1 to 2 tablespoons). After another 5 or so minutes, push all the rice to the outer edge of the wok to make a volcano; add a little more oil here and pour in beaten egg. When it's cooked, use your spatula to break it up into small pieces and mix it into the rice. You can also add some corn at this point, not to mention some chopped up chicken from what made your broth! Another 5 to 10 minutes of stirring and it should be done. In a lot of cases, I'll start up a second wok with a little more oil, my meat, some veggies and even mushrooms. Then I mix it all together at the end. :-)
     Stir frying takes some time to master. The first few times your rice will not be the best consistency. Then you'll probably overcook it a couple of times, then you'll start to get it right. Various spices and herbs can make a big difference in the flavor too. Poultry spice is good for adding flavor to the broth, as well as various peppercorns in both the broth and the stir fry itself. The only downside to stir frying a meal is higher fat content. Oils and butter or margarine are fat in another form. That's not necessarily a bad thing, though. Just watch for those saturated and transfats!
     The other quick meal I make is crumbles. These are super simple. You take one pound ground meat (turkey, beef, pork, whatever) and put it in the wok. It takes a couple of small to medium onions or one really big onion (like a Vidalia) - chop it up and add it in. Now chop up either 4 solid stalks of celery or maybe a few good sized carrots. Lastly, mince up 4 or so cloves of garlic. I'll cut them and put them in the food processor to really mince them up; that way the onion, celery/carrots and garlic all mix in really well and the flavor is better distributed.
     Next come the spices: One teaspoon of 5 peppercorn pepper, freshly ground of course <g>, maybe some poultry seasoning (ground turkey), half a teaspoon of allspice and who knows what else I'll try. With all this in there, I start mashing it all into the meat. Then I fire up the burner and start cooking the concoction, using my wooden spatula to really break the meat up. After about 20 or so minutes of cooking, it's done and ready to eat.
     Crumbles are great on bread as a sandwich (ala sloppy joe style) or mixed in with rice. We used to make a similar dish that included a hamburger crumble, a can of cream of mushroom, a can of cream of chicken, and a few cups of rice but it was too high in sodium - I'm working on making some cream-of soup to thicken up the crumble and rice mix as well. If you do it right, your crumble will be fairly low in sodium. I made a turkey crumble today that was about 400mg sodium in total. Two meals later and I still have enough left over for a sandwich this evening.
     You'll note that I am a little loose on how much of what ingredients. That's because it varies every time I make one of these up. This is where experimenting comes into play. Different spices and herbs, red onions instead of white onions instead of yellow onions, carrots instead of celery, peas instead of corn, and so forth. All these make the dish flavorful and keep it interesting. jnj@spamcop.net


Lori K, May 19, 2004 - Hi everyone, I had a blood test last week and it showed a blood sodium level of 149 and chloride of 111, both elevated. I have been getting dizzy spells, feeling more SOB, and have gained 5 pounds over the last few weeks. Has anyone had this? I have cut way back on my sodium intake the last week and my fluids. I am not sure if I am dehydrated or fluid overloaded. I am just confused. I will be seeing the cardiologist soon, but wanted to see if this is common. Lori. thegoof86d@aol.com
 
Jon's note: Your levels are just barely above high normal as far as I can tell. Maybe your symptoms are unrelated or loosely related?


Steve P, May 19, 2004 - Hi, I am forging into new territory tomorrow. I meet with a hospital to talk about starting a cardiac rehab program. I am really hesitant about what they will expect or what they can do for me. I was diagnosed in September of 2003 with CHF caused by severe cardiomyopathy. My EF is still only just above 20%, but they say I am well compensated. I do feel pretty good compared to how I was feeling in January to February. Has anyone else been through this? Did the fatigue thing jump up and make your life hard? Any experiences would be appreciated. shpdwcopa@msn.com


Jon, May 21, 2004 - Howdy-doo, Here's another archaic quote for ya <g>: "Be thankful we're not getting all the government we're paying for." Will Rogers. Jon.


Lana V, May 21, 2004 - Hi, I just found this message board after searching for what seems like hours! I hope I can get some answers soon, or opinions anyway. Can a person who is prone to fluid retention make it worse by being around a large body of water? I have heard that this is possible.
     My hubby Gene was diagnosed with borderline heart failure about 2 years ago as a result of his sleep apnea going undiagnosed and untreated for probably most of his 30 years. He is an avid outdoorsman - take away his hunting and fishing and he simply wouldn't want to live. Today, he spent all day fishing in his boat at the lake and upon returning, he started having chest pains and lots of fluid build up in his legs. I realized that the last time he went fishing for any significant length of time, the same happened. Could this be coincidental or is it possibly related?
     Thanks to anyone who cares to send their opinion to me. Being new at this message board system, e-mail replies are also appreciated. Thanks everyone, Lana V. Vseamaiden@aol.com
 
Jon's note: The answer is no. It is more likely a combination of eating and drinking high sodium plus inactivity for too long - both hard on CHFers.


Scott Brown's May 21 reply to Lori K's May 19, 2004 - Hi Lori, You did not mention anything about the diuretics you have been taking during this time. Without this information it is difficult to comment directly on your experience. In general, I have been short of breath (SOB) after not taking diuretics for a few days, and after taking too many diuretics too soon. I have no idea why being dehydrated causes SOB (maybe someone wise can answer that one).
     Hitting the diuretics too hard can cause lots of ill effects, including dizziness. How is your blood pressure? If it is low, this might also point to low blood pressure. It is difficult to generalize because you would have to know what "normal" blood pressure is for you. Make sure you eat and drink foods with lots of potassium if you are using lots of diuretic - unless you take prescription potassium, which is slow release. The diuretic should take care of the elevated sodium level. kitchenerguy@rogers.ca


Carrie, May 21, 2004 - Hi everyone, I was just diagnosed with CHF about a month ago. The cause is unknown, perhaps some virus or something. I just know that a month ago I went to the doctor for what I thought was pneumonia and left diagnosed with this. I'm a 35 year old, very healthy female. I exercised every day, vegetarian (except for seafood because I knew it was heart smart), and did everything to avoid this; well, almost everything. I quit smoking for 7 years, but started up again when my marriage went into the toilet.
     I guess my real question is that I see that a lot of people are on disability and that really disconcerts me, because my job is my life. I've been off work for a month now and it's making me depressed, gain weight, and feel utterly useless. I work with abused kids. I counsel them and I love making connections and a difference with these kids.
     However, my job is very physical. We go on hikes, bike rides, play sports, you name it, and I love being active. So, what now? Am I not allowed to be active anymore to the extent that I was? I cannot imagine my life any differently. If my current condition does not allow me to do the things I love, then what's the point? If I'm taking care of myself, taking my meds, seeing my cardiologist, etc,..., why not continue to enjoy the active life I had in the past?
     I honestly don't see how I can live a quality life without the things that make me happy, like being highly active and being there for my kids. Any input? Thanks. Carrie. Scary68@aol.com


Cary Deen's May 21 reply to Linda O's May 14, 2004 - Hi, I went to the clinic to set up my appointments. Here is what I found out: They are going to put me on a program that will last a month. Appointments are for 3 days a week for 4 weeks. The treatment is called "Anodyne Therapy." If after 4 weeks they find I have responded to this treatment, they will provide a device that I can take home so that I may treat myself.
     Because of my CHF, the bottoms of my feet have become numb. With the help of this therapy, so they say, the feeling in my feet may return but requires continued daily at home therapy. For more information about this therapy you can visit their web site at www.anodynetherapy.com. cdeen10@bellsouth.net


Sheryl C's May 21 reply to Steve P's May 19, 2004 - Hi, How lucky you are to be sent through a cardiac rehab program. You will learn what you can tolerate under the watchful eye of professionals. They place you on a heart monitor while you exercise; having that monitoring would be reassuring for me.
     Keeping to a safe exercise program along with taking your medications and staying on the low sodium diet is the best way to increase your chances for improvement in your quality of life. A positive outlook helps too. Fatigue is the hardest part to accept about having CHF. The mind is willing but the body isn't. Hopefully you will increase your stamina with this exercise program. Good luck. Sheryl C. cvprehab@hotmail.com


Robert, May 21, 2004 - Hey, What do I do? My cardiologist cut me free. He said he could not help me. This is New York City and doctors here are quite arrogant. hawkdog86@aol.com


Jon, May 22, 2004 - Hi everyone, If you are low-income and have Medicare, please check out the information at www.cms.hhs.gov/media/press/release.asp?Counter=1056. I hope it helps someone.
     Here's a quote for the day: "There is a special place in Hell for those who remain silent." Dante. Jon.


Roger G's May 22 reply to Robert's May 14, 2004 - Hey Robert, Shortness of breath comes and goes for me too. I had the Vasotec cough and had to back off to Diovan, then Avapro. Ask your cardiologist to try a switch if you think it may help. rogergthree@earthlink.net


Roger G, May 22, 2004 - Hi, Is anyone else losing their teeth? Mine seem to be coming out slowly but surely. Could it be drug related? rogergthree@earthlink.net


Elizabeth K's May 22 reply to Steve P's May 19, 2004 - Great going, Steve. Cardiac rehab has been totally positive for me. In fact I've continued in a Fit for Life program. There really are no expectations placed on you except to show up and strap on a monitor. Unlike the gym scene, you will be encouraged to go easy and not overdo. Our program includes lectures about how CHF affects our conditioning and a big benefit for me has been a solid sense of how to manage my existing strength and energy as it continues to improve. Overdoing will cause major setbacks and possibly more heart damage so learning how to pace yourself helps in the long term.
     Fatigue came with my CHF package too, but since CHF has a zillion causes there are probably as many repsonses to the diet, drug, exercise triad. For me, I went from whimpering from bed to chair in November of 2003 to kayaking, mowing, pruning and planting while going to rehab every day this week. I tend to believe the drugs and diet keep me alive and because the heart is going to do what it does, the exercise keeps all my other systems efficient enough to allow a good quality of life with less demand on my heart.
     Take a discman and headset. I just read that one study found that rehab participants that exercise to music improve their verbal skills as well, go figure. Darned if I could find the link to the article again, sorry. I hope you have great outcomes from rehab. You could be lean, mean and waxing poetic in no time. WmOccam@aol.com


Paul D's May 22 reply to Carrie's May 21, 2004 - Hi Carrie, My advice is: Don't panic. The game's not over yet. CHF comes in a wide variety of causes and severity, and many people are able to be quite active if they get onto a proper medication regimen and watch their fluid and sodium intakes. I'd suggest learning all you can about both CHF in general, and your particular case in specific.
     For the first, read The Manual and other info on this web site. For the second, talk to your doctor and if he isn't a CHF specialist, take the time to find one. Then you'll be able to work on figuring out what your level of activity going forward can be. It will depend on a lot of things, like what caused your CHF, how badly your heart is damaged, and your own individual body's quirks.
     I think the route to having the best future possible is for you to take active charge of your own care, find a good doctor to work as your partner, learn as much as you can, and listen to what your body tells you. Everybody's case is different. Good luck! therealpauld@netscape.net


Jeff B, May 22, 2004 - Hi Jon, I am a recently diagnosed CHF patient. I'm 37 years old. I have been dealing with CHF for about 8 years now due to my dad. He is class 4 and not doing well at all. My wife happened on your site last night and we both really like your site very much. Thanks for doing this. It'll definitely help me along the way to living with this myself now. You're a great inspiration to me. Keep it up. Jeffrey Brezinski. J.Brezinski@sbcglobal.net


Cristina L's May 22 reply to Robert's May 21, 2004 - Hi, The doctor was way out of order telling you that he can't do anything else for you. You need to find a new one. I actually go to the Heart Failure Center at Columbia Presbyterian and see Dr. Maybaum. They are very helpful. I would suggest you give them a call. All testing can be done right at the hospital. Good luck. clisa@optoline.net


Jon, May 25, 2004 - Hi everyone, Well, I tore up my left arm before it finished healing so typing is currently a chore. This will slow things down. I also discovered that even with an EF of 50%, I can gain 6 pounds in 24 hours and have an awful day. Demadex to the rescue!
     Well, here's the quote for today: "The trouble is not that players have sex the night before a game. It's that they stay out all night looking for it." Casey Stengel on coaching major league ballplayers. Jon.


David Wilson's May 25 reply to Lana V's May 21, 2004 - Hi, If I stay outside for more than one hour when the temperature is over 80 degrees I get sick. With CHF the heat and sun will get to you and make you feel very bad. I love to go to the lake in the summer but I get sick every time. If the temps are under 80 degrees it doesn't. davybwilson@webtv.net


Lane, May 25, 2004 - Okay, I just got the news that I have been approved for my disability benefits. I want everyone who is struggling with their application to be sure to use Disability Advocates services. Without Mick's help, I wouldn't be so relieved. I know God's hand was also involved and He will see my tithe in the morning. I can't help but know that He led me to Mick for help. Thank you Jon, for the link on the web site as well! fastlanedelivery@flash.net


June's May 25 reply to Roger's May 22, 2004 - Hi Roger, Are you on Coumadin? My aunt was on Coumadin and lost her teeth. June. chavisj@tampabay.rr.com


Alexandra, May 25, 2004 - Hello everyone, I recently read an article in USA Today about CardioResyncronization Therapy pacers (biventricular or whatever you like to call them). It had some very encouraging findings from a study of patients who had them implanted. If anyone is interested in reading it, e-mail me. I scanned it and put in a gif file, so I hope I did it right so you can read it. Health and happiness to everyone! jakethesnake56@aol.com


Roberta, May 25, 2004 - Hi, Do any of you out there live in the Atlanta area? I want to find a CHF specialist. I'm hoping to perhaps get several suggestions from some of you. My web searches so far have been frustrating because I either get too many hits or none at all. I have my HMO's directory of providers, including cardiologists, but that doesn't tell me the kind of info I really want to know about them, like their bedside manner and whether they tend to treat you like a real person or just some cash cow. Any input would be greatly appreciated.
     Also, it looks like my sleep study is finally going to happen. It was scheduled for 2 weeks ago but the sleep study center cancelled and rescheduled me for this weekend. It looks like my holiday weekend will kick off with a snoozing start! <lol> notinksnemr1@aol.com


Lori K's May 25 reply to Scott Brown's May 21, 2004 - Thanks Scott for trying to help out. I am not on a diuretic but the docs think I was dehydrated and retaining fluid in my belly. Go figure! The regular cardiology visits seem to be getting less worthwhile and I see the CHF doc next Thursday.
     How do you all handle the situation of a CHF doc that is far away (2 hours) if you need to be hospitalized? The local cardio docs are just not very up to snuff on cardiomyopathy other than being able to recite the standard treatment being ACE inhibitors, beta-blockers and diuretics. I had a bad experience during my last and only trip to Club Med. I wished my CHF doc was there. All my other docs are local. Does anyone have any good set-ups now? Thanks again for the help, as always. Lori. thegoof86d@aol.com


Holly, May 25, 2004 - Hi Everyone, I am hoping to have my mother who has CHF come live with me in New Hampshire. If she quits her job in Colorado to move to New Hampshire to live with me, she will lose her health insurance. If she decides to only work part time here she may not get medical benefits. If this is the case I am wondering if anyone here was able to get independent health insurance on their own even with a pre-exisiting condition such as CHF. Does anyone know if it will be next to impossible to get covered? If she will not be able to get health insurance then I certainly don't want her to move to New Hmapshire to be with me and my family. Thank you, Holly. hollywillkings02@yahoo.com
 
Jon's note: I strongly urge you to talk to health insurers and get information and quotes in writing if it is possible. This is not the sort of thing you can take chances with.


Roberta's May 25 reply to Carrie's May 21, 2004 - Hi, As someone who pretty much spent about 3 years in denial after being diagnosed with CHF, I'm probably the last person who should be trying advise anyone else on how to cope. I don't know if you have this sense of loss and despair, and even fear, but that's how it hit me when I was diagnosed. Unlike you, I hadn't lived a particulary healthy and athletic life style. It's taken me this long to sort of get a grip on my situation and start being more proactive.
     I don't think I'll ever forget that day. I'd known something was really, really wrong for weeks but I just kept my head stuck in the sand, I guess just hoping it would go away. Of course it didn't so one day I dragged myself to the doc after work. The next thing I know, he slapped an oxygen mask on my face, called 911 and I'm off to Club Med complete with red lights and sirens.
     I agree with the post about trying to be calm. Yes, this is a big change in your life and I don't want to come off sounding too new age-y, but I really do believe that while you may not be able to control a lot things that are happening with your body right now, you can change how you think about it. This is something I frequently have to remind myself of as well, especially on days when I wake up and don't see how I'll find the strength to get out of bed and drag myself to work.
     The blow for me wasn't so much to the kind of life I was living. It was more about how I saw myself. It was like I'd somehow crossed this line into the world of "dis"ability. I didn't much care for it so I'm working on how I feel about that, too.
     I would encourge you to think more about the long term rather than too much on the right now. The limitations you have now may improve. If they don't improve as much as you hope, there's always the opportunity to try new things. Listen to your doctors but also your own body, and don't be afraid to get second opinions. Take care. notinksnemr1@aol.com


Linda O's May 25 reply to Carry Deen's May 21, 2004 - Hi Cary, Thank you for the web site about anodyne therapy. Our children live in North Kansas City and that was one of the addresses there. I appreciate your message. Please keep us posted regarding your luck. Linda Oline, age 64, EF 25%. lnoline@hotmail.com


Roger, May 25, 2004 - Hi, It was a little of a hassle getting low-sodium meals on the trip but well worth it. I stayed at a bed and breakfast and they fixed me up good. I walked about 2.5 miles every morning before everyone was up. I lost 2 lbs and my blood sugar levels stayed at around 100, so I did great there! We met a lot of new cousins in Canada that we didn't know we had on my wife's side. Everyone was very friendly and it is like we've known them for a long time. They had a party for us one night and there were about 40 people there! rkharmony@highstream.net


Neville, May 25, 2004 - Hi, I was wondering whether you would be kind enough to give me some advice please. My mother (age mid-70s, normal weight, drinks in moderation, gave up smoking about 7 months ago) developed swollen ankles around 3 months ago and more recently has been experiencing swelling around her stomach area together with breathlessness. She does however, continue to go about her daily life as before.
     My Internet researches indicate that she may have heart failure and I am worried sick. She has a doctor's appointment on Wednesday of this week but I can't help fearing the worse and that the clock is ticking. I'd be really grateful for your thoughts and perhaps some words of encouragement. Thanks. With best wishes, Neville. neville.mundy@mesg.co.uk


Carla's May 25 reply to Carrie's May 21, 2004 - Hi Carrie,Welcome ot my world. I too was just diagnosed at the ripe old age of 35. After totally freaking after I supposedly had bronchitis, I decided to beat this thing. I see a heart failure specialist and he has basically said to live my life the way I want to live it, exercise in moderation, travel, etc! He said that time is on my side due to my age and general overall health. I feel great most of the time too. In fact, I didn't feel bad until they told me I did. Just take your meds, continue to do what you do, and rest if you need to rest. Trust me, your body will let you know when you need to veg for a few hours. There's no need to jump out and start looking at becoming disabled. There's plenty of time for that later when we're old. Contact me anytime, it sounds like we have a lot in common! carla@cnbt.com


Laurie P, May 25, 2004 - Hi all, It has been awhile since I posted. I am age 38 and have DCM and CHF. I take 6.25mg Coreg twice a day and 20mg Lisinopril (Zestril) once a day.
     I was wondering if anyone else out there has any stomach cramps or back pain. I have pain in the right side of my back below my rib area, kind of going around to my side a little. I haven't changed meds in over a month and a half now, and this started about 10 days ago. I have an appointment with my CHF specialist Wednesday and I will ask her then, but I was wondering if anyone else has ever had this and what it might be. If I could get rid of this I would be feeling pretty good.
     Also, can anyone describe what edema of the abdomen feels like? I haven't had any in my legs or feet at all, but sometimes I feel bloated in my upper abdomen area. Once again, thanks to you all and to Jon for this fantastic site! Take care, Laurie P. lrp3lmp@aol.com


Lydia Moore's May 25 reply to Roger G's May 22, 2004 - Hi Roger, It's interesting you should mention that about your teeth. I never had any problems with my teeth before and awhile back, my dentist told me my teeth were starting to move. In other words, I could move them with my fingers. Then I had to have a tooth pulled because it was breaking off. I have wondered if it is less circulation or what. I've got to ask my dentist and I will let you know if I learn something new. We always seem to learn something new. Love and hugs to all and God bless, Lydia. Flanders48@msn.com
 
Jon's note: To anyone with heart problems and tooth or gum problems, I strongly suggest trying fairly large doses of CoQ10.


Jill M, May 25, 2004 - Hi, I've had DCM and CHF for about 7 years and have been stable since then with all the standard meds, including Lasix. My last EF was about 50%, up from an initial low 20s. After a very long flight, my weight dropped by about 3 pounds and I felt lousy. I decided that I might be dehydrated and stopped taking Lasix. Four days later my weight (always low) has remained constant in spite of some large meals and I feel great - better than I can remember feeling for a long time. My CHF specialist has always insisted that my meds should stay exactly the same. I'd like to try going without Lasix for a week before telling him, naturally weighing myself every day. Is this in any way dangerous?
     I'm an old-timer on this site and a constant lurker. In the early days when I thought I was about to die Jon and the rest of you saved my sanity. Any input would be much appreciated. Jill M. jillm@iafrica.com


Jon's May 25 reply to Jill M's May 25, 2004 - Hi Jill, I'm not a doctor, but it should be fine. Just be aware that your blood potassium level might go up, especially if you take an ACE inhibitor. Don't delay getting blood work done too long.
     Diuretics are for symptoms, not to reduce mortality. If they aren't needed to control symptoms, you shouldn't be taking them. My CHF doc gives me tremendous lattitude in how I take my diuretics. He tells me that if I don't need them, don't take them. Obviously, this is highly individual but diuretics are known to cause fatigue so I'd say give it a try - carefully. Jon.


Catherine L, May 25, 2004 - Hi, This is just for your information. I've heard that cinnamon can help reduce the risk of diabetes. See www.eurekalert.org/pub_releases/2004-04/uoc--cmh041304.php. gardengirl47@kc.rr.com


Don C, May 25, 2004 - Hi, Monday was my re-birthday. I received my heart one year ago that day. I cannot believe an entire year has gone by since I had my heart transplant. I still remember the days when I could not climb a flight of stairs or walk through the park. This past weekend I helped my daughter learn to ride a two-wheeler. I never imagined being able to do that. A couple of years ago my wife helped my son because I couldn't run more than a few steps. There is life after CHF, and it is good life.
     I try not to lose sight of the gift I received and how much it has changed my life over the past year. Thank you to the parents of 17 year old Ryan. Through your grief, you found it in your hearts to donate your son's organs. Because of your generosity, I can watch my children grow and spend time with my wife. For this, I will be eternally grateful. pine32@pacbell.net


James, May 25, 2004 - Hi, Aside from drug interaction, what is the downside of potassium chloride for CHFers? If one is not on a daily supplement, is there any reason to not shoot for roughly the RDA of 3 grams? jnj@spamcop.net
 
Jon's note: Blood potassium level changes. Intake would need to be consistent after setting a certain intake level and having electrolytes monitored.


James' May 25 reply to Daid Wilson's May 25, 2004 - Hi David, For what it's worth, not all CHFers are so adversely affected by the heat. Just about a week ago, I spent 2 to 3 hours outside in 85ish degree weather, mowing the lawn. I spent 3 to 4 hours in similar temperatures last autumn spreading about 1500 pounds of mulch and placing about the same weight in rocks. In my case, my EF is around 30%, I have a BiV pacer, and I'm class 3/stage 2. After spending this kind of time outdoors, I usually feel much better, invigorated even. jnj@spamcop.net
 
Jon's note: Are you sure you're class 3? This is defined by symptoms and your stated activity level would be highly unlikely to leave you feeling invigorated if you are class 3. See the link in your post.


Shelby, May 25, 2004 - Hello, This is my first time here. I am 38 years old and was told on 4/26/2004 that I had congestive heart failure. We have no insurance and have been turned down for what is offered in our town. My husband and I don't know what is in our future or what to expect. Can you help and give us a heads up on what is ahead, and maybe where I can go for some help? Thank you for you time. flicka_1965@hotmail.com


Jon, May 26, 2004 - Hi everyone, Here's my quote for the day: "History fails to record a single precedent in which nations subject to moral decay have not passed into political and economic decline. There has been either a spiritual awakening to overcome the moral lapse, or a progressive deterioration leading to ultimate national disaster." Douglas MacArthur. Ouch! Jon.


James' May 26 reply to Jon's May 25, 2004 - Hi Jon, I should have been more clear. I go between class 2 and class 3. There are also times when I'm exhausted just resting on the couch. The point I was trying to make is that not all CHFers suffer the heat poorly. jnj@spamcop.net


Steve's May 26 reply to Roberta's May 25, 2004 - Hi Roberta, I see Dr. W. Stanley Arnold at the Atlanta Cardiology Group. I have been seeing him since 2000 and he is great. He has helped me very much. The Atlanta number for the ACG is 404-851-5442. I hope this helps. Steve. wwarthog@alltel.net


Larry's May 26 reply to Holly's May 25, 2004 - Hi, My wife is self-employed and we were able to get Blue Cross with a 6 month wait on preexisting conditions but we pay about $800 a month for it. Check with insurance companies. Larry. carolthornton@comcast.net


David Wilson's May 26 reply to Shelby's May 25, 2004 - Hi, You need to read The Manual on this site. CHF varies from person to person. Some people are able to continue working and just get a little tired sometimes. In my case I almost died. My ejection fraction was 14%, which is very low. The meds, including Coreg improved my EF to 25% then up to 40%. It has since gone back to 25%. I had an echo done today and it has probably gone down again because I feel lousy.
     On the bright side, I had gastric bypass surgery last October and have lost around 100 pounds. I had hoped losing the weight would make me feel better, but not so. I have lost enough weight to qualify for a heart transplant. I will discuss transplant on my next visit to my heart doc in June. My job offered disability insurance, which paid me until I got on SSD. Luckily I was approved quickly and after 2 years on SSD, you get Medicare.
     Have you applied for state Medicaid? Some of the CHF meds are generic and cheap. Do you know your ejection fraction? If you have no other options you may have to go to the local hospital ER. The drug companies will give you meds free if you can't afford to buy them and your doc concurs. Are there any free clinics or subsidized clinics you can go to? Apply for SSD if you cannot work. You worked and paid taxes, and now you should get some help. Look for and accept any help you can get.
     I will pray for you. God will take care of your needs, but not all you want. We need far less than we think we need. davybwilson@webtv.net


Andy, May 26, 2004 - Hi, I've been reading this site regularly since first being diagnosed with DCM 12/31/2003. My symptoms at diagnosis were very mild and have continued to be so (I've been told I'm class one) until the past week. Despite being on the max doses of lisinopril and Coreg, plus 10mg furosemide, digoxin, and Inspra, I've developed a noticeable amount of SOB even at rest. I have no other symptoms - no edema although I had a slight weight gain (2 lbs in 3 days), and no coughing. I've been very careful with sodium and fluid intake as well.
     I'll be seeing my doctor later this week. Does anyone have any insight or experience with a sudden spontaneous worsening like this that could help me explain this to him? I did decrease my Lasix about 4 weeks ago from 20mg to 10mg (with doctor's okay) because of lightheadedness, spaciness, and inability to concentrate. Also, I read here that PVCs and SOB are linked, but can't find much info on this. Can anyone shed any light on this? Much thanks to Jon - I can't tell you how much I appreciate this site. andy@mrdatacorp.com


Catherine L, May 26, 2004 - Hi, In October of 2002 I learned I have idiopathic cardiomyopathy - a weak left ventricle. I have no blockages in my blood vessels. Since January of 2003 I've been on Toprol-XL (50mg) and Altace (2.5mg).
     Up until last fall I was able to exercise 4 to 5 times a week on my stair machine and get my heart rate into the 120s and even low 130s per minute and not feel wiped out. Since October of 2003, I've had much more difficulty working out. Tonight I couldn't even get my heart rate to 120. I was breathless at 115 bpm and I had to stop after 30 minutes, not the 45 minutes which I used to be able to do. Admittedly, I haven't been good about salt intake and I am now 156 lbs (I am 5' 10"), having gained 10 lbs over the past year. I feel like I am trying to drive a car (my body) with the brakes on.
     Yet in December of 2003, my cardiologist said I am doing great and my EF is 55. My question is, what is causing this fatigue, breathlessness and inability to exercise at my target heart rate (123 bpm for a healthy woman my age)? Does it take awhile for heart meds to kick in? Are my drugs finally doing their thing? Is my cardiomyopathy progressing? Or is it the fact that my heart has 10 more lbs. to lug? Does anyone have any advice? I really would like to know your thoughts. Many thanks. Catherine. gardengirl47@kc.rr.com


Patricia's May 26 reply to David Wilson's May 25, 2004 - Hi David, I have problems with summer temps also. Last Thursday the temperature was in the upper 80s here. I spent most of the day outside in the shade and I am still trying to recover. The heat and humidity really make me feel horrible. I have trouble breathing when I'm outside during the summer also. I am afraid I will be spending my summer inside. Wishing you wellness. Patricia. pgp24815@aol.com


Patricia's May 26 reply to Jon's May 25, 2004 - Hi Jon, I know what you mean about the fluid. When my EF went up to 45%, I thought I would not have any problems with fluid. It is worse now than ever. I don't think I'm doing anything different. My meds and diet are the same. Would stress make a difference? I just don't get it. Patricia. pgp24815@aol.com
 
Jon's note: You're describing the next clinical trend in CHF that is currently not recognized by doctors - CHFers with improved to normal and near-normal EF who continue to have significant symptoms. You heard it here first.


Alexandra's May 26 reply to James' May 25, 2004 - Hi, I just wanted to say that I too am class 3 (have had all the symptoms) and have a BiV pacer and I am able to do things outdoors that I never could have before having this device implanted. I may not be exactly invigorated but I do feel better with some sort of exertion.
     I guess it just depends on the individual and tolerance level. I am also very positive about this whole thing and I think that has such a great impact on everything we do. Don't get me wrong, I do have bad days like everyone, but with the positive attitude I think the fewer they are. I wish they all could be great days but I know that will never be, so I just focus on the good ones. I wish you all good days and happy times! jakethesnake56@aol.com


Diane's May 26 reply to Carrie's May 21, 2004 - Hi Carrie, I was diagnosed with viral CHF with an EF of 15% complicated with cardiomyopathy in 2000 at age 38. I was a very fit female with an outside sales job in construction, a Harley rider, and a single mom with 4 kids. I worked for a year and did not fare well. I finally listened to my body and retired. I then started to take it slow, a little at a time with frequent naps and rest time. I followed my diet and partnered with my cardiologist to find the right cocktail of meds that improved my function. I also researched my meds.
     I now have an EF of 30 to 35%. I can last longer and be productive. I am currently taking care of my brother with ALS, which includes lifting him, bathing him, etc. I even ride the Harley. Listen to your body and cardio doctor and you will hopefully regain strength. Please contact me if you want to chat. God bless and good luck! cotu@sbcglobal.net


Vicki, May 26, 2004 - Hi, I am posting to ask people to pray for my brother who has just undergone a heart transplant. He has had to go back into surgery today to clean up some blood clots around his heart and lungs. The transplant was done 2 days ago. He hasn't responded as well as they had hoped. They now hope getting rid of the blood clots around his heart and lungs will help. Thanks, Vicki. art_vic_payne@yahoo.com.au


Valerie R, May 26, 2004 - Hi, I have heard of 4 other people who have lost teeth due to Coumadin but I didn't believe it. Now I am a little concerned because I can't afford to because of a bone ridge in upper mouth. Does anyone know anything definitive or preventative about this?
     Also, I live in Miami. I don't get into direct sunlight more than a little a day due to some of my medication which tells me not to, but heat is another matter. My doctor told me it was the humidity more than the heat and I've come to find out he is correct. Unfortunately, humidity is usually high in Miami.
     Lately I like the heat due to hypothroid problems from medication (amiodarone), but my new air conditioner takes out mucho humidity so I can set it at 80 and not be bothered. Val. vgrogers@aol.com


Anita C's May 26 reply to Don C's May 25, 2004 - Hi Don, Congratulations on your re-birthday. I am so glad to hear you are doing well. I recently celebrated my transplant anniversary also - 4 years! My health is great. I had suffered from CHF and cardiomyopathy for 9 years prior to transplant. Best wishes for continued good health! abcox@triad.rr.com


Angela, May 26, 2004 - Hi to all, I have been coming to this site and message board off and on for about 9 months. I was diagnosed last June with CHF and DCM. I had 2 valves repaired. At the beginning of May, I had a TEE and my doctor said my mitral valve was regurgitating severely and that my DCM was pretty bad. He told me I would probably have to have a heart transplant. He set me up for a heart cath last Monday. I was so upset and miserable for the last 2 weeks waiting to hear the results.
     Well, after the test he said that I am doing much better than they originally thought. He said my valve isn't as bad as they thought (2 weeks ago!) and that my pressures are all good. I am very happy and relieved. I am 43 years old and have 2 kids. I don't know how everything changed so much so quickly, and I am not going to question it.
     Is there anyone out there who lives in Las Vegas? I just wanted to put out some happy news! spirit51000@yahoo.com


Nancy S, May 26, 2004 - Hi, I called to make an appointment with my CHF doc and found out that he is moving to Denver. I was transferred to his nurse, who told me that they should have told me at the appointment desk. Wouldn't you think that you would be notified if this were going to happen?
     Anyway, they told me to make an appointment with the other CHF doc at UAMS where I go, but it may take a couple of months to get in since he is having to pick up all the other doctor's patients.
     I also have a question. Is it normal for someone who is well compensated to not have to go for checkups except every 6 to 8 months? I have a BiV pacer and at my last checkup I got a very good report. I just wondered about bloodwork. It seems to me that you are always stressing how important it is to have your levels checked regularly. Is this often enough. They have not really even checked it every time even when I was going every 3 months. Take care, everyone. Nancy, class 3, stage 3, and doing great! ns1@alltel.net
 
Jon's note: For a stable and well compensated CHFer, bloodwork is about every 6 months and you see the CHF doc about once a year.


Carla, May 26, 2004 - Hi, About CoQ10, I would really appreciate any input, good or bad, on this stuff. Also, what dose should be taken? I've been told by many people to try this to make my heart recover faster, but my cardiologist says I would be wasting my money and that Coreg is all I need. However, I'm grasping for anything that will help me at this point. Thanks. carla@cnbt.com


Tom S, May 26, 2004 - Hello, Prior to the onset of CHF I had some tooth and gum "issues" and ultimately every tooth that I had left in my head - mostly bottoms since all the tops had been pulled - decayed and fell out within 6 or 8 months. It was a double whammy at the time because I had no dental insurance or extra cash to spend on a dentist so I just suffered and endured the pain, which was extreme at times. I did get a sympathetic doctor to give me a script for antibiotics when the gums got so infected I could barely open my mouth or sleep on a couple of occasions.
     I was told that because I was on a strong and large dose of Lasix (320mg a day) that the usual saliva bath that kept bad bacteria from attacking the tooth enamel were not washed away and that is the reason decay was so virulent and rapid.
     I have been "toothless" now for almost 7 years and have adjusted just fine. While I can't eat peanuts or chew on a hard apple, or chew off corn on the cob, I can eat steak and just about everything else. I don't know how I do it and am lucky that my teeth never really showed and most people don't have a clue that I haven't got a full tooth in my mouth. I do pretty much have a full set of tooth "nubs" (tooth remnants) on the bottom which help in chewing.
     Removing the nubs would require dental surgery and frankly I am so used to not having anything in my mouth I probably could not adjust to dentures even if I could afford them, which I can't. There are other expenses in a house with 5 children that are much more important. bigheart@muchomail.com


Jack D, May 26, 2004 - In the beginning God created the heavens and the earth, and man has been trying to improve on it ever since. maddjak@hotmail.com


Jacky, May 26, 2004 - Hi, A few months ago I posted complaining about leg weakness when I go upstairs or up a hill. I have to sit down for a few minutes to recover. I assumed this was heart related but a new CHF specialist I saw yesterday (the other one moved) says he doesn't think the problem is heart related! I compare it to getting dizzy when you stand up quickly except it is legs and stairs. He suggested I see my PCP, which I will do, but what could it possibly be? It is getting worse and I am getting depressed about it. Any thoughts on this? jackymwb@earthlink.net


Jacky, May 27, 2004 - Hello, I should mention that my electrolytes are all okay and BNP is 98, which is okay too, isn't it? I have an echo next month. jackymwb@earthlink.net


Jon, May 27, 2004 - Hi everyone, If anyone is interested, I spotted acetyl-L-carnitine on sale at www.bodybuilding.com/store/bioc/ace.html. This is the kind of carnitine used in trials and is the most effective. The one time it's on a good sale, I have no money but I thought I'd pass it on. The quote for the day: "All right, everybody line up alphabetically according to your height." Casey Stengel.
     Now for the proud papa act: My daughter (a senior at college) accepted an internship recently with a major accounting firm, an internship they just created to snag her. She will start - as an intern, mind you - making more money per week than I ever earned in my life. Maybe in a few years, I can get a job driving her limo! <g> Jon.


James' May 27 reply to Alexandra's May 26, 2004 - Hi, I think that attitude is a very important thing in this battle. When I was first diagnosed, I had plenty of crying at night (yup, a guy that admits he cried). As my condition worsened, I held my little girl tight and gave it a cry or two there as well. It wasn't that I was pessimistic, just realistic. I realized that my treatment options were fast running out.
     I dreaded every appointment with the doctor (still do, to be honest) as they always ended with bad news. Each day it became more and more difficult to do the daily run. The BiV pacer was pretty much my last stop before the transplant list. Thankfully, things stabilized after it was implanted (knockin' on wood here).
     Throughout the ordeal, I have never "given up" nor have I given in to the prospect of death. It is not in my nature. I have been realistic about my condition however. I am no longer working the 9 to 5, instead managing my own business with limited hours; I've drastically reduced stress and I've made major modifications to my diet. I realized this was a do or die thing. Eighteen hour work days, heavy stress loads (ate 'em up), and 10g or more of sodium each day (fast food kingdom) wasn't going to cut it.
     Now I'm on the mend and things are looking up. The doc still thinks he's gonna keep me around another 40 or 50 years. My first son was born about 9 months ago and we are rebuilding from the financial devastation of 2 years out. In short, I get knocked down but there's rubber back there so I bounce real good! ;-)
     It's good to realize and understand what you're up against but it's equally important to know that it's not the end by any stretch. My personal quote at the bottom of every e-mail I send is: I am neither an optimist nor a pessimist, but rather, I am a realist. The glass is not half empty, it is not half full. It is merely at 50% capacity. jnj@spamcop.net


James' May 27 reply to Carla's May 26, 2004 - Hi Carla, You'll want to give the link your post under About CoQ10 a read. This will give you some solid details on CoQ10. CoQ10 is naturally produced in the body but as we age production goes down. It is used in cells' energy production. Folks with heart failure may have lower than normal levels.
     CoQ10 supplements have shown positive effects on symptoms. Many of us have found the same on our own, myself included. Dose ranges from 50mg a day to 200mg or more. Since it's a dietary supplement, there is no real guideline for how much to take. I currently take one 100mg pill each morning while others take three 30mg or 50mg pills over the course of the day. You'll have determine what dose is best for you.
     Supplements are a grey area when it comes to traditional medications. They focus on nutrition and are commonly referred to as nutraceuticals. There can be drug interactions between a supplement and meds. It's important to be aware of these interactions before you take them. There are health professionals that can assist you in determining which supplements are right for you, such as naturopaths. You may find it in your best interests to do a little searching about in your area to see if any are available. Good luck! jnj@spamcop.net


Jon's May 27 reply to Carla's May 26, 2004 - Hi Carla, I usually suggest starting at 30mg CoQ10 once a day and increasing to several doses adding up to roughly one mg per pound of body weight daily. For example, a man weighing 200 pounds would take roughly 70mg three times a day. Take it with fatty food, such as low sodium peanut butter - just a small bit. Jon.


James' May 27 reply to Jacky's May 26, 2004 - Hi Jacky, I have the same issue with my legs. They fatigue very quickly and I have to rest them for a bit to recover. In my case, this typically only occurs when I do a large number of stairs or hit a fairly steep hill. More to the point, it hits me when I do the stationary bike. It is also not at all consistent except for on the stationary bike. I've made the assumption it is a couch potato issue rather than a CHF issue. <g> If you find out otherwise, please remember to post your findings! jnj@spamcop.net


Carol, May 27, 2004 - Hi, I haven't visited the site in a few weeks. What happened to the message board for caregivers? I don't see that link anymore. Thanks. Carol. carol.stephen2@sympatico.ca
 
Jon's note: See http://www.chfpatients.com/heartforum2.htm


Carolyn, May 27, 2004 - Hi, How do I find a CHF specialist in the Anderson, South Carolina area? careless1957@bellsouth.com


Jeff B, May 27, 2004 - Hey all, Well, I got a lot of news today. I'm being sent to a study test for sleep apnea. My cardiologist thinks my condition was brought on by 3 main things, one of which is sleep apnea. The second is an excessively high red blood count, which she is sending me to a hemotologist for, to get tests to figure out what's going on there. Of course my dreaded diet and smoking aren't helping the situation so the new diet is going into place this weekend and next pay day I am going on the patch. She also put me on a low dose of lipitor for cholesterol.
     Normal red blood counts are 13 to 15. Mine are at 18. If anyone happen's to know anything about this let me know okay. I don't really get it. Three points don't really seem that high to me but she's concerned. ( Jon's note: See www.nlm.nih.gov/medlineplus/ency/article/003642.htm#Normal%20Values. I don't think you have your test values quite right. )
     The good news about this is with the medications I'm now on (Toprol 50mg, lisinopril 10mg and lipitor 10mg), a change of diet, and some excercise, it sounds like eventually my output levels may rise again. Maybe if I'm really lucky I have delayed the onset of any damage to my heart. The stress test should tell me that in 2 weeks.
     I wish my dad had been diagnosed years earlier like I just was. Unfortunately, he already had major damage, enlargement of the left heart when he got diagnosed. It took away a great deal of his life. These first 10 years of retirement were supposed to be relaxing and joyful, not in and out of the hospital and barely able to leave the bedroom half the time. Keep the faith, all! Jeff. J.Brezinski@sbcglobal.net


Patricia's May 30 reply to Jacky's May 6, 2004 - Hi Jacky, I have leg weakness also. My job requires me to be on my feet almost constantly, which is very difficult. At the end of the day my legs and feet are numb. I am also having simular problems with my arms.
     Any time I raise my hands above my heart (styling my hair, brushing my teeth, etc.) my arms hurt terribly. A few weeks ago, I was shopping for clothes and just looking through the hanging clothes caused me pain in my arms. I had to stop and rest. I finally just gave up and went home. I plan to discuss it with my doctor next month during my visit. Patricia. pgp24815@aol.com


Jon, May 30, 2004 - Hello everyone, Sorry for the delay in posts. It's a pathetic and boring story so I'll spare you. <g> Here's the quote for the day: "I generally avoid temptation unless I can't resist it." Mae West. Jon.


James' May 30 reply to Jon's May 27, 2004 - Hi Jon, From my research the most effective form of carnitine for heart disorders was propionyl-l-carnitine and acetyl-l-carnitine showed promise in Alzheimer's and HIV/AIDs research, as well as being favored by body-builders. Most of the studies I've found state they used the propionyl-l-carnitine as well. Have you found some additional research suggesting acetyl-l-carnitine has stepped up to the plate? jnj@spamcop.net


Jon's May 30 reply to James' May 30, 2004 - Hiya James, You're right, my apologies. I have personally been using other forms of L-carnitine for so long that I have stopped considering PLC a contender. That's because PLC can't be bought except in bulk as far as I have found. I found a bulk supplier willing to sell to me but I am obviously not set up to put it in pill form and sell it. ALC is next on my list - just a matter of practicality.
     I usually buy as many of my supplements from bodybuilding suppliers as possible because they tend to carry higher quality products. Their usual buyers are more rowdy if something doesn't live up to expectations so they toe the line a bit better than your local Walmart or whatever. <g> Bodybuilders also take a lot of the same supplements we do for the same reason - they improve the body's energy production and use.
     Lots of people ask me what supplements I take. My EF has risen from 13% (by cath) to 50% (by echo) over 9 years. I still take magnesium, taurine, L-carnitine in one form or another, and creatine. You have to watch the creatine monohydrate though, it can make you fat in its usual formulations which are high-calorie, and has to be taken in a 3-month-on/one-month-off cycle or your creatine transporters will decrease.
     The ATP energy cycle is seriously disturbed in CHFers. Many supplements help improve this cycle, like CoQ10 and creatine. After cells use ATP to produce energy for muscle contraction, it is converted to ADP (adenosine diphosphate). Creatine donates a phosphorus molecule to convert ADP back to ATP, restoring energy. Creatine supplements may or may not directly benefit the heart (depending which studies you want to quote), but it does increase energy levels in skeletal muscle - an area of great help to CHFers, who have dysfunctional skeletal muscle systems. If you take it, roughly 5 grams a day is enough. For more on skeletal muscle, see the New Page, last article. Jon.


Jill M, May 30, 2004 - Hi, I have a question about Medicare. My situation might make some of you cringe. I am not a US citizen and live in Africa but my late husband and I spent more than the requisite 10 years in the US, and all our children were born there, and 2 of them live there. It's taken me more than 4 years to persuade Social Security that I am entitled to benefits.
      In the 1960s, non-working women didn't get SS cards. I sent in all my voluntary work accreditations which might have helped, because yesterday I received my SS card, which entitles me to Medicare in the US as well as SS benefits. I didn't claim as a disabled person even though I have CHF/DCM. I decided this would complicate matters too much.
     Up until now I didn't feel that I could join my children in California because I couldn't afford to live there on my African pension with all my medication costs, and didn't want to be a burden on them. This might change things. I'm now 65.
     I'm sorry for the long-winded approach, but what I'd like to know is whether Medicare would pay for the treatment I need. Do I have to request disability payments? Jill M. jillm@iafrica.com


Scott Brown's May 30 reply to Jeff B's May 27, 2004 - Hi Jeff, I hope your cardiologist is correct. Make sure you ask your cardiologist the tough questions, like: Since your dad had cardiomyopathy, why isn't a defective gene the most likely candidate for your condition? To me, it seems likely this is familial cardiomyopathy. What does Lipitor (clogged arteries) have to do with your problem (presumably cardiomyopathy)? There seems to be a link between cardiomyopathy and sleep apnea. However, in most of my research the sleep apnea was a symptom of poor heart function (shortness of breath caused by poor heart function). Improving the sleep apnea improved heart function in some cases, but was not thought to be the cause of the weakened heart function in the first place.
     I agree the meds can really make a difference. I don't think there is a doubt that current drug therapy prolongs life for many patients. If you are healthy enough to exercise, that will make a difference as well. I assume this is because your body becomes more efficient, lower resting heart rate, less breathing needed. Personally, I have found you start losing the benefits of the exercise quickly after you stop exercising for more than a week, so I think it is important to keep it up.
     Best of luck Jeff, make sure you keep us in the loop. Thanks, Scott Brown. kitchenerguy@rogers.ca


Carolyn Knight, May 30, 2004 - Hi, Does CoQ10 help a-fib in any way? Along with the other things it is good for? Carolyn. nannahealed5@msn.com


Myrtle C, May 30, 2004 - Hi Jon, I tried to read about the acetyl-L-carnitine you mentioned, but I don't know if it would be a product I should consider. I do need to lose weight and I have much fatigue. I don't exercise as just doing household chores can do me in. Would you recommend this product for me? How long would it take to find out if it helped? I would buy you a bottle of it while it is on sale if that would help you.
     PS. Congratulations on having reared a daughter who is a success in life already. God bless her and you and your wife. Myrtle C, aka Omie. Omieof3@axs4u.net
 
Jon's note: I would recommend magnesium first, then taurine, then CoQ10, then L-carnitine. Thank you for the kind offer but I have a supplement due Tuesday with L-carnitine in it.  :-)


Myrtle C, May 30, 2004 - Thanks, Jon! I took your helpful advice on reducing Coreg over a few weeks. I was off of it for about 3 weeks, because of the side effect of depression. I have now gone back on the lowest dose and will increase that after the middle of June. I am asking for prayers that the next dosage will once again be tolerated and keep me on the Coreg at a reduced level, without the horrid depression. It is wonderful to have you and this web site, as my doctor is often toooo busy to return my calls. Myrtle C. omieof3@yahoo.com


Chelsie, May 30, 2004 - Hello, I went and saw my cardiologist earlier this month and she told my mother, father and I that there was no reason for my heart chambers to not be enlarged, and my chambers are not enlarged and the cardiologist was very surprised. She said that I will have to have my valves replaced in my early 20s before I think about having any children. She is keeping me on frequent visits (every 6 to 8 weeks). I go back on June 30. I will update everyone on my next visit! mjcb@northstate.net


Lori K's May 30 reply to Jeff B's May 27, 2004 - Hi Jeff, Are you sure you have a high red blood cell count? Normals are between 4 and 5.4. Was your doc referring to your hemoglobin or your white cell count? I can give you some ideas as to what your doc might be thinking if you let me know. I worked in Hem/Onc for 18 years in hospitals and industry. Take care, Lori. thegoof86d@aol.com


Roger's May 30 reply to Carla's May 26, 2004 - Hi, Right after my first bypass in 1989, my doctor put me on CoQ10. I was taking 90mg per day all this time till I went to the new cardiologist and I am now down to 30mg and taking a powder he sells through the office, which has 66 different things including CoQ10. It's one of those things that you can't really tell if it is helping except for some tests the doctor runs, and he says all is well and good. rkharmony@highstream.net


Roger's May 30 reply to Jon's May 27, 2004 - Hi, Among all the things I'm taking is carnitor, which is L-carnitine in prescription form, also folic acid. The cardiologist said with the script I know I get the full dose of what he recommends. This is for my homocysteine level. rkharmony@highstream.net
 
Jon's note: Good tip, I'll check to see if my Rx coverage will pay for Carnitor Oral.


Donna V, May 30, 2004 - Hi All, After months of complaining to my cardiologist and my PCP about muscle and joint pain (especially in my knees) my wonderful pharmacist suggested Ultracet (37.5 tramadol HCI/325mg acetaminiophen). I no longer feel like a ping-pong ball between the docs and the relief from pain is wonderful. I can walk almost normally!
     I did learn the hard way that I'll have to take it with food or be nauseated. I understand that this drug is easier on the stomach and will not affect Coumadin levels and may be taken as many as 8 times a day if needed. I'm also on Coreg, Lanoxin, Lasix, Potassium, Altace, and Aldactone. I remember reading on this site about some folks taking Ultram but do not remember the comments. Does anyone have any thoughts or experiences I should know about? Thanks. Donna V. dmvditty@aol.com


Jon's May 30 reply to Donna V's May 30, 2004 - Hi Donna, I take Ultram for foot and lower leg pain. How many times a day you take it depends on what dose pills you use. <g> It gives me insomnia if taken in low dose too close to bed time but higher doses don't have that effect on me. I don't find it as effective as narcotics but it doesn't have any side effects for me except the one I mentioned so that gives it the edge for me. Jon.


Janet, May 30, 2004 - Hi, Has anyone heard of the heart supplement by Nutricia called MyoVive? It's supposed to be a combination of the heart supplements CoQ10, L-carnitine, taurine and some others. I can't find a web site for information or how to order. Also, does anyone have a good combo supplement with the "nutrient stew?" Janetca1@msn.com


Jon's May 30 reply to Janet's May 30, 2004 - Hi Janet, I used to take MyoVive, which is an expensive liquid supplement. It is no longer available in the USA, but I believe it can still be purchased in Europe. As I understand it, Nutricia changed its marketing in the USA to a product designed for overall heart health, which is not nearly as effective for CHF. Jon.


Jon, May 31, 2004 - Hi everyone, Once again, the boring quote: "The remedy is worse than the disease." Francis Bacon. There are some new recipes up at Kitchen Corner's Let's Cook page as well. Jon.


Sandy, May 31, 2004 - Hi, I was diagnosed with CHF this past January and like all of you, I am working hard to understand how I got this. Luckily, I found a great doctor here in Clearwater, Florida after I dumped 3 before him, and with his help and the help of this board, I have found my sanity and the way for me to help myself. I am a 57 year old famale and much too young to let this get to me.
     I wanted to share some information I found while searching for a cure. I believe one will be out there one day. Good luck to all of us! See www.eurekalert.org/pub_releases/2004-04/uopm-frt042204.php. bleuskiiisgrl@yahoo.com
 
Jon's note: This trial was also included in today's mailing.


Roberta's May 31 reply to Steve's May 26, 2004 - Hi, Thanks for the feedback. Unfortunately, this doc isn't on my insurance carrier's list of providers but I will keep him in mind because I'm also considering changing my health insurance coverage. I'm not sure I want to ditch my HMO just yet, I may just need to change to a different PCP who will do a better job of referring me to their approved cardiologists. notinksnemr1@aol.com


Roberta, May 31, 2004 - Hi, My sleep study was Friday night. Here's how it went: I arrived at the medical center complex where the sleep study center is located about 20 minutes earlier than my 8:30 PM appointment time. Fortunately, the tech who would be working with me had arrived just moments earlier himself - so he said - so I got buzzed into the building and went up to their suite. The tech guy told me there were 3 patients having studies that evening and he was glad I had gotten there early so he could get a head start.
     Before arrival I had dutifully showered and washed all hair products out of my hair. The tech gave me his canned "welcome to your sleep study speech" and had me sign a form agreeing that, insurance notwithstanding, it was ultimately up to me to see that the center got paid. There was also a "reality check" questionnaire I had to complete. I guess they have to make sure you have your wits about you both before and after the study.
     So the tech guy takes 2 digital head shots: One head-on and the other profile. He takes my blood pressure, then leaves so I can change into my pajamas. When he gets back, he starts wiring me up. There seemed like a zillion of those elctrode things stuck to my scalp; about 5 or 6 on my face, some on my upper torso, and on both lower legs. One soft elastic strap was around my chest and one on my abdomen. It was at this point that I realized I should have heeded my instinct and not taken my daily dose of furosemide, which I'd taken earlier that day about 3:30 PM. However, the instructions were to take your meds like you normally do, so I took the furosemide, and brought my atenolol with me to take right before bedtime. At home, I usually do have to make 4 or 5 trips to the bathroom due to the diuretic but most of the time I fall back to bed and zonk out again right away.
     Usually I'm so wiped out at the end of the work day, I had every confidence that I would sleep and snore my way through the night. Wrong! This study was set up to observe you sleeping normally during the first part and then hooking you up to the CPAP for the second half. Since there were no watches or clocks to refer to, I had no idea of the times I had to get up for potty trips. Of course, I couldn't just get up and go. I had to either raise my hand or sit up on the side of the bed to alert the tech guy, who was monitoring by remote video, to come unplug me from Control Central. I know I shouldn't have felt embarrassed, but I did. There was also that feeling of performance anxiety that I wasn't doing well!
     It was about 9:30 PM by the time I was in bed and ready to start sleeping. After what I'm guessing was about an hour and a half of me not sleeping, the tech guy gave me 2 Tylenol PMs to knock me out, which they did, but nature still made a few more calls before it was time for Phase 2.
     The tech guy woke me up and said it was about 1:00 AM and time to put on the CPAP. That was really interesting but darned uncomfortable! He only had 2 models or sizes to choose from. The first one was too small because I could feel it pressing in on my nose once it was strapped on and since I need all the air I can get, that one was nixed. He put the larger one on and it didn't have a perfect seal around my face but we did the best we could. So now I'm wired for Part 2. But being a side sleeper, as soon as my head touched the pillow, I could feel even more air escaping from around the sides of the CPAP mask.
     The tech guy must have noticed it too, because he came back in and tried to fine-tune the fit. Basically all he did was cinch the strap at the back tighter, which may have helped the fit but also was putting major pressure on my head and cheekbones - pressure which became full-blown pain after about 10 minutes. I am not a wimp but after about 30 minutes it was all I could do not to rip that thing off my face! Still, I gave it my best shot. I tossed and turned, made a few more potty trips, etc. I'm not sure how much time went by but the tech guy came in finally and said since I wasn't really sleeping, he was going to end the study and just let me sleep the remaining time without the CPAP mask. He said he thought I may have dozed off at least once with the CPAP on but I think he sensed that I was feeling down and he was just being kind.
     A little while after that, tech guy came back to wake me at 5:00 AM. He took my blood pressure again and got me all unwired. I had such a case of bed hair. <lol> Plus there were 4 or 5 large globs of the adhesive stuff matted to my scalp. There was no way that was just going to come right out. I managed to kind of shape my hair into something semi-presentable for public viewing, burshed my teeth, dressed, etc. Then I had to fill out the post-reality check questions: Yes, I knew my own name, I knew where I was, and that it was Saturday morning.
     That was it. Now I have to wait several weeks for the results and do a follow up with my PCP. I suspect that I may have to have another go at it, especially if there wasn't enough data during the second part of the study to make a diagnosis or recommendation. notinksnemr1@aol.com


Donald MacLean, May 31, 2004 - Hello, For those who would like a canned chicken broth with only 60mg sodium per serving, look for Chicken Broth by Shelton's. I found it at a health store here in Escondido, California. The company is in Pomona, California. The broth is fat-free also. I add some spices to anything I am using it in. I hope this helps. popaturkey@aol.com


Tim Pauly's May 31 reply to Jon's May 25, 2004 - Hi Jon, You said, "You're describing the next clinical trend in CHF that is currently not recognized by doctors - CHFers with improved to normal and near-normal EF who continue to have significant symptoms. You heard it here first."
     I'm not sure if you remember me. I was diagnosed with DCM/LBBB last fall. I improved quite a bit after having surgery to remove a pseudoaneurism caused by a botched heart cath procedure. I am now on cardiologist number two. I am told my EF is 45% and that my condition is mild to moderate. Well, I wish they could spend a day in my shoes. I was doing okay for awhile, actually feeling really good for a short time, but the past few weeks I've been going downhill.
     Last month a co-worker quit, which meant a significant increase in workload and travel for me. I started feeling like I was going downhill, but my employer was already well aware of my condition and I had told him that a lot of travel was difficult for me. Does anyone else have problems with traveling? More than 45 minutes to an hour of driving sucks the life out of me!
     Anyway, last week I was trying to take it easy but ended up having to go up and down stairs quite a few times trying to work on a network. It just did me in. I've been feeling totally and completely out of energy ever since.
     I'm currently searching for a specialist. I live in southwestern Virginia and the nearest specialists are listed in Knoxville and Richmond. I'm hoping maybe they will have some insight my current cardiologist doesn't. My first cardiologist was in Radford, Virginia and my current one is in Salem (Roanoke). It's very frustrating because I'm being told I should feel a lot better than I do!
     By the way, on driving, after 45 or so minutes of driving I start getting irregular heartbeats like crazy. It's like my heart just goes nuts. It will speed up, then slow down, then skip beats, palpitate and all kinds of nonsense. I am thinking that this is what makes me so tired, but I'm not sure. Sometimes I get these same symptoms just lying down. My doctor totally dismissed the irregular heartbeat and said it was nothing to worry about. I feel like I'm just falling apart. At least if I have to travel 3 hours to see a specialist, I should have all the worst symptoms by the time I get there. ;-) tim@yougothere.com


Carolyn Knight, May 31, 2004 - Hi, I would love to talk to people who are waiting on transplants. I need support and would be happy to hear other's trials, that I may be encouraging. Carolyn. nannahealed5@msn.com


Carolyn Knight, May 31, 2004 - Well I am home, a-fib seems to be something they say I am going to have to live with. I feel so tired, they want me to walk and I for the life of me don't know how. They say I don't feel bad because of the a-fib, it is just the bad heart. That is why I am on the list.
     I feel helpless but I know God is in control and if there was something he wanted done, then it would have come to pass. I am just desperate to be able to do a little something. I am seeking the Lord for strength and courage, determination to finish what God has started. I could use any encouraging words. I know this is no walk in the park, so don't candycoat it, just strength to make it through is what I need. Thank you, Carolyn.
     PS. I have been in CCU for a-fib. nannahealed5@msn.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.

Talk to Jon Site Index