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

Walter K's 10-16 reply to Kat H's 10-14      pacemaker experience
 
Walter K's 10-16 reply to Kat H's 10-14      pacemaker experience addition
 
Wayne S 10-16      thanks, coping, this site
 
Hedy K's 10-16 reply to Kat H's 10-14      pacemaker experience
 
Marilyn 10-16      questions about doctors, asthma & more
 
Paul N 10-16      EECP information
 
John Len 10-17      edema & gout, update
 
Jon 10-17      some of you will like this
 
Gus R's 10-17 reply to Wayne S' 10-16      coping, longevity, and to Marilyn
 
Retta 10-17      edema, what do I ask cardiologist?
 
Jean C's 10-17 reply to Marilyn's 10-16      asthma, CHF, meds questions
 
Jeanette 10-18      questions about Zestril and liver function
 
Mile W's 10-18 reply to Retta's 10-17      getting the right doc
 
Christy P 10-18      heart rate and exercise questions
 
Jon's 10-18 reply to Christy P's 10-18      heart rate, exercise
 
Patti D 10-18      flu shots, kicking the habit, medspeak
 
Jon's 10-18 reply to Patti D's 10-18      kicking the habit
 
Tracey C 10-18      does anyone get chest tightness despite clear arteries
 
Jon's 10-18 reply to Tracey C's 10-18      I do
 
Britta 10-18      intro, questions
 
Phyllis A 10-18      SSD review update, Lee R
 
Larry's 10-18 reply to Blake's 10-7      infection concerns after heart transplant
 
Mike W 10-18      questions about cath and treatment
 
Jon's 10-18 reply to Mike W's 10-18      cath and treatment
 
Sharon P's 10-18 reply to Christy P's 10-18      exercise and heart rate
 
John 10-18      how do I cope with diuretic resistance?
 
Jon's 10-18 reply to John's 10-18      diuretic resistance
 
Christy P's 10-18 reply to Jon's 10-18      exercise
 
Krista 10-18      diary/journal comments & questions
 
Britta 10-18      MVI definition
 
Robin S 10-18      seek CHF doc in Indianapolis
 
Robin S 10-18      is this degree of disability common with CHF?
 
Jon's 10-18 reply to Robin S' 10-18      just more questions <g>
 
Leland Y 10-18      update, blood sugar & more
 
Holly's 10-18 reply to Britta's 10-18      MVI symptoms & treatment
 
Donald G 10-19      low sodium Thanksgiving dinner recipes
 
Glenda 10-19      seek Dallas Texas CHF doc, air travel advice & more
 
Wayne S 10-19      exercising with CHF can be frustrating
 
Freddie B 10-20      got a heart! & more
 
LaCinda 10-20      can't I get my own medical records?
 
Jon's 10-20 reply to LaCinda's 10-20      obtaining medical records
 
Kat H's 10-20 reply to Walter & Hedy K's 10-16      high BP, meds, pacemakers - questions
 
Mike 10-20      adjusting meds doses
 
Jon 10-21      temporary technical glitch here
 
Jon 10-23      technical glitch explanation
 
LaCinda's 10-24 reply to Jon's 10-20      thanks for medical records info
 
Anna 10-24      can I get SSD with an EF of 40%?
 
Ruthie A 10-24      diabetes and CHF, new e-mail address
 
Marilyn C 10-24      update, how do I deal with ups and downs?
 
David A 10-24      questions - Coreg dose, blackouts & more
 
Patti D's 10-24 reply to LaCinda's 10-20      medical records, doctors
 
Sharon J W's 10-24 reply to Freddie B's 10-20      congratulations
 
Pauline 10-24      book recommendation
 
Beverly C 10-24      update, aching chest question
 
Linda G 10-24      prayer request & more
 
Jim 10-25      strange sensations - anyone else?
 
Wayne S 10-25      takes getting used to, but,...
 
Marlene 10-25      seek doc in Cleveland area, leg pain question & more
 
Thelma's 10-25 reply to Anna's 10-24      being denied SSD, trying to survive
 
Jon's 10-25 reply to Thelma's 10-25      fighting for SSD, getting some at-home relief
 
Anita's 10-25 reply to Freddie B's 10-20      congrats, me too, transplant questions
 
Patti D's 10-25 reply to Robin S' 10-18      coping with CHF
 
Patti D's 10-25 reply to Mike W's 10-18      heart cath procedure experience
 
Patty K's 10-26 reply to Patti D's 10-25      intro, SSD & trauma to chest questions
 
Anna N's 10-26 reply to Thelma's 10-25      SSD, coping & more
 
Jeanette's 10-26 reply to David's 10-24      Coreg, low blood pressure, fainting
 
Jeanette's 10-26 reply to Jim's 10-25      tingling sensations
 
Wayne S' 10-26 reply toThelma's 10-25      doctors and lawyers work for us, Disability
 
Randy 10-26      had an epsiode, will have EPS, seek info & experiences
 
Cheryl G's 10-26 reply to Marelne's 10-24      leg and foot pain experience
 
Mike W's 10-26 reply to Randy's 10-26      lots of us have anxiety too & more
 
Ophelia 10-27      trip update, appetite question & more
 
Kathy 10-27      seek advice on headache
 
Patti D's 10-27 reply to Patty K's 10-26      physical trauma, stress, my experience
 
Bill D's 10-28 reply to Kathy's 10-27      nitro headaches
 
Charlie's 10-28 reply to Mike W's 10-18      a cath gone bad
 
Diane P 10-28      intro, history, questions
 
Jon's 10-28 reply to Diane P's 10-28      a start, I hope others reply
 
Denise 10-28      biventricular pacer is helping me
 
Jon's 10-28 reply to Denise's 10-28      pacing info, standing offer to everyone
 
Louise 10-28      intro & more
 
Jon 10-28      more later
 
Jeanette 10-28      update, liver function, funny page & more
 
Joe S 10-28      if not CHF, what?
 
Jim L 10-28      big problems - docs & Coreg - questions
 
Jon's 10-28 reply to Jim L's 10-28      docs & Coreg
 
Thelma's 10-30 reply to Jon's 10-25      SSD, recipes that freeze well question
 
Bill D's 10-30 reply to Joe S' 10-28      valve surgery, insurance coverage
 
Donna Z's 10-30 reply to Jim L's 10-28      I would get a new doctor
 
Joe S' 10-30 reply to Jon's 10-28      exercising, eating right & more
 
Katie's 10-30 reply to Freddie's 10-20      congratulations
 
Brian 10-30      seeking VRT trial and device info
 
Jon's 10-30 reply to Brian's 10-30      try CenterWatch
 
Davida S' 10-30 reply to LaCinda's 10-20      getting medical records
 
Jon's 10-30 reply to Davida S' 10-30      getting medical records
 
Bill 10-30      update, right doctor & more
 
Barb L S' 10-30 reply to Anna's 10-24      SSD, EF & more
 
Jon's 10-30 reply to Barb L S' 10-30      why CHFers rely on EF measurement
 
Carol M 10-30      intro, amiodarone problems & much more
 
Jon's 10-30 reply to Carol M's 10-30      welcome, amiodarone problems & more
 
Tom B 10-30      re-synchronization pacemaker experience
 
Davida S' 10-30 reply to to Bill's 10-30      great news! & more
 
Mary 10-30      update after meds, flutters & bumps question


Walter K's October 16 reply to Kat H's October 14, 2000 - Hi Kat, This may not be relevant to you but see my post of 10/12. Basically, I got a pacemaker before I had CHF and it was set for a resting pulse of 60, with a high sensitivity. It did then keep my resting pulse at 60. After I got CHF my resting pulse was 85-90 or so, which I attributed to CHF. I recently had the pacemaker sensitivity cut back to normal and my resting pulse dropped immediately to 60. My blood pressure was not affected as far as I can tell. I don't know if this is of interest to you but since it relates to pacemakers, I just thought I would mention it. Best wishes. hknoth@magpage.com


Walter K's October 16 reply to Kat H's October 14, 2000 - Hi Kat (again), My wife claims I am wrong about the pacemaker not affecting my blood pressure. She says my BP went up immediately and never came down till I started on meds for it. I remember things a bit differently but she is probably right. You know how memory is with us CHFers. hknoth@magpage.com


Wayne S, October 16, 2000 - Hi, I am a 49 year old male. I was diagnosed with CHF in February of 2000 with class 4 CHF and an EF of 12% that increased to 20%. My meds are Coreg, lotensin, a diuretic and potassium, and of course I watch the amount of salt I intake. I was scared just like everybody else. This site has really helped me cope with my CHF. My family has really helped me cope too. I just want to thank you for this site. It is comforting to know that I am not by myself. I think attitude is very important. Always keep the faith. frances@blkbox.com


Hedy K's October 16 reply to Kat H's October 14, 2000 - Hi, I am Walter's wife. He has already replied to your post, but here I am putting my 2¢ in. My memory regarding any of his many medical problems is much better than his. Everything that happens with him is etched into my brain. He had a pacemaker put in on an emergency basis about 8 years ago. Until that time his blood pressure was quite normal. Immediately on having the pacemaker put in he developed high blood pressure. The doctors who came to see him in the hospital (none of his reqular docs) asked if he had always had high blood pressure. We said, never. His pressure stayed high from that date and eventually his regular internist decided to treat it. I kept asking all the doctors we saw if the pacemaker could have anything to do with it but all the doctors just shrugged it off without giving us an answer. I believe that it is very likely that his high blood pressure resulted from the pacemaker, although nobody would confirm that. Your post is the first thing we have seen, outside of our own experience, suggesting there might be a relationship between high blood pressure and pacemakers. One big downside of pacemakers is that people with them cannot have MRIs, therefore a very good modern diagnostic tool is not available to them. hknoth@magpage.com


Marilyn, October 16, 2000 - Hi, Now I am really confused. I thought going to a cardiopulmonary specialist would answer all my questions but here I sit, completely flummoxed. The x-ray, according to the doc, was within normal limits although my diaphram pushes into my lung space, thus cutting off some of my healthy lower lung. Let's see, my lungs are normal and my heart looks good, so why the SOB? Simple: Asthma. The results of 2 visits to this new doctor were asthma and that exercise and weight loss should fix me up fine. Forget the fact that by increasing my Bumex and starting oxygen at 2L and starting inhalers of Serevent and Flovent has all but erased my symptoms. Needless to say, if I could exercise, I wouldn't be in this shape. Along with a diagnosis of CHF some 3 years ago, I have osteoporosis, which requires the use of a cane.
     Now, I know that age 74 is getting up there but senility has so far not been a part of my diagnosis. Now I wonder. I don't wheeze, I don't cough much except for those wild spasms that sometimes knock your feet out from under you. I always thought they went along with CHF. In the past my SOB was helped with an increase in my diuretic. This time a new inhaler was added and O2 was ordered as needed for activity. I do feel better but it was the Lord who was my healer. Do any of you question the rather simplistic way your doctors treat you or is my age showing?
     I don't mean to sound off. I am grateful to God for watching over me these past 3 years. I have nothing to complain about really. God has been so good to me. Most of you have been sicker with this stupid disease than I have been and I thank you for the sounding board. macook500@cs.com


Paul N, October 16, 2000 - Hi, I built a site to offer information about EECP. You can see it at http://sites.netscape.net/pnewpppppp/Myhomepage.html. pnewpppppp@netscape.net


John Len, October 17, 2000 - Hi, I went to the doctor about edema in my foot and leg again today, and another problem that has popped back up again: gout. I got the same answer as usual. Wear a support stocking. Right. I couldn't stand them before because of diabetes and neuropathy in my feet and legs and I certainly can't stand them with gout in my big toe. I guess it's back to water pills. a_lenny6@hotmail.com


Jon, October 17, 2000 - Hi everyone, I put up a new a wallpaper some of you might like. If you worry about having surgery or procedures, please do not check it out. If you have a quirky sense of humor and no problem with procedures, you'll probably like it. It is called Uh-oh (near the bottom of the page).
     By the way, I have not stopped heart info mailings, guys. I am just taking an extended break to prevent burnout. I'll get back to it when I'm a bit more rested from the grind of rewriting medspeak. I have 3 pages in the making right now, so new info is coming one way or another. ;-) Jon.


Gus R's October 17 reply to Wayne S' October 16, 2000 - Hi Wayne, It sounds like you are doing very well without my advice, so I'll just say that I agree with everything you said. If you do get to feeling low, think about this: I was 49 when I was diagnosed too and was told to quickly get my affairs in order. I did, and at age 57 I'm still tottering along. Since I've never been the best at anything, you should be able to beat my 8 years easily. ;-) Best wishes to us all, Gus R.
     A PS to Marilyn's October 16, 2000: Nah, it's not your age. Dox are prone to being twits, that's all. One can always fire the twits, but I think there's an old saying about one twit in the hand being worth two twits in the bush, so,... gus13@net66.com


Retta, October 17, 2000 - Hi, I was just diagnosed with CHF. You might know this was on a trip and had to see a doc I had never seen before. He put me on Lasix because he said there was water in my lungs, which he could see on an x-ray, and in fact, all over my body. I looked like a blimp. I had asked my heart doc about it 3 weeks ago because my legs and feet were swelling up. She said she didn't think so because I would have shortness of breath. Well, I now have shortness of breath. I go back to my heart doc this Friday. What should I be concerned about, such as what should she check? What kind of tests should she run? What should I be asking or be concerned about? Anything you guys can tell me would greatly be appreciated. RettaDirck@aol.com


Jean C's October 17 reply to Marilyn's October 16, 2000 - Hi Marilyn, Asthma? I read your post with a great deal of interest. Did your lung pressure feel as though you were pregnant? I've heard from a couple of other people who said they had SOB and felt such pressure but I've never heard one mention asthma. I've been on a merry go round and was all but told I was senile while gasping to talk at all. Finally my internist gave me a couple of Serevent inhalers to try and they really helped. A sheepish smile and quick prayer gets me through most situations. Did your asthma start after or with your CHF? Does anybody know if it can be a side effect of our CHF or meds? Good luck, Jean C. ojean@oz.sunflower.org


Jeanette, October 18, 2000 - Hi all, I was at my primary care doc's yesterday and she told me that my liver panel was high and that it might be due to Zestril. My cardiologist has never said anything to me before so I figure this is something new going on with my liver, and I was wondering if anyone has had a similiar case. Has anyone who has been taking Zestril then been taken off it due to high liver panel scores? I am having another test this Thursday and they also think I might have diabetes. :-( I will let you know the results when they come in. Thanks for listening to me vent too. I am praying for all of you. Take care, your friend Jeanette. jeanette841@yahoo.com


Mike W's October 18 reply to Retta's October 17, 2000 - Hi Retta, As many people have discovered through this board, you need a new doc! Any cardiologist who poo-poohs the most common symptoms of CHF is not quite with it, and not someone to whom you want to entrust your life and health! You want a CHF Specialist. Peace, Mike Wafkowski. mikeyw@soholinux.mine.nu


Christy P, October 18, 2000 - Hi, I have a mundane question but one for which I'm having difficulty finding any answers. I have CHF and DCM. For the past year I've been trying to excercise daily by walking at least 2 miles on my treadmill. I recently got a Polar heart rate monitor so I could watch my HR and be sure that I'm not going to hit the threshold to set off my ICD now that my exercise tolerance has increased. Much to my surprise, just walking around the house my heart rate is is in the 110s with a resting heart rate in the 60s. Walking on the treadmill at 3½ mph my heart rate is in 110s. To get my heart rate to 130, I have to jog! I'm 42 years old and the calculated HR for aerobic exercise is about 130, with a max of 140. I last about 10 seconds doing that and have to drop back down to about 3 mph, and my HR immediately drops back into the 110s. I'm taking beta-blockers and assume that they are causing this HR suppression. My question is, is there a target heart rate that I can realistically aim for that is doing my heart good? Is there a "revised for beta-blocker users" HR table? breezip@hotmail.com


Jon's October 18 reply to Christy P's October 18, 2000 - Hi Christy, No. There is no such revised "system." Everyone who has CHF and is trying to exercise according to systems designed for healthy people please stop now and start over, throwing all that info aimed at healthy exercisers out the window first! Your heart no longer works the same due to meds and disease, so you can't use the same systems for exercising or anything else. There are several methods I would endorse for exercising with CHF. Keep in mind that I am not a doctor.

  1. Obviously, if you are lucky enough to go the same amount of time at the same effort as a healthy person, go for it. Just don't count on this always being the case and be mentally ready to slow down when your body tells you to slow down. Of course, talk to your doctor first, regardless
  2. Ignore heart rate (if you have a mechanical heart device of any kind, consult your doctor first) and go for duration rather than intensity. Walk at a leisurely pace but for as long as possible, working up to 30-40 minutes a day at one go. What is a leisurely pace? Rather than look for x.x mph, try a pace that does not make you SOB but that does not allow you to talk to someone the whole time without getting winded either. <g> After you reach the desired duration, then you can increase your pace
  3. Intermittent training is an option for those who simply cannot sustain exercise, or who are severely out of shape to start with. Exercise for 5-10 minutes at a time, or even less if necessary, but do it at least 2-3 times a day! This should be a specific form of exercise like walking, not doing housework. That's because you need to achieve some consistency of effort to measure progress, and housework/chores make it too hard to compare level of effort.
  4. Strength training is always an option and if done without excessive gung-ho, always provides a benefit. Age does not have any affect on your ability to build muscle cells! It can be done with something as basic as soup cans in each hand while you walk or can be done as a separate form of exercise, apart from walking, swimming, etc,... If done with weights, it needs to be done right. Take it from a guy who used to pump iron 6 days a week (I was 5' 8" and 199 pounds with very low body fat when CHF hammered me) - going at it wrong accomplishes only frustration. Get help from an expert to lift weights. I recommend that CHFers only use dumbbells - never barbells! Keep sessions under 30 minutes a day, no matter how good you feel that day.
  5. Stay active daily if you cannot exercise. Prepare your own meals whenever humanly possible even if it's just heating something up. Dust a few pieces of furniture at a time several times a day, use the upstairs bathroom to give your legs some work, do some dishes in the sink, never sit down too long without shifting your weight or moving to another chair, walk around your yard with your dog once a day, and stay away from that television! My point is that activity has benefits for how you feel, how well you think and how long you live! Just take your time and don't give up if benefits are not immediate!

     I have never - even when healthy - considered maintaining some specific heart rate as necessary or even beneficial to healthy exercising. It's like dietary cholesterol intake monitoring - vastly overrated in importance - and it will eventually be proved just as overrated as that cholesterol intake advice was. This may not be the case for those who have arrhythmia or a mechnical heart device, so please speak up, you guys. For the rest of us, I consider making exercise as fun as possible and as consistent in schedule (daily is best) the two most important things. It's like sex: you don't have to be a fanatic about it to enjoy both it and its after effects. ;-) Jon.


Patti D, October 18, 2000 - Hi everyone, Thanks to all who responded to my question about how to quit smoking. I already knew I would have to try quitting cold turkey since cutting back isn't working and I'm back to my 1½ - 2 packs a day. I've picked a date in November to quit, since my husband has to go away for 4 days and I figure I'll just stay in bed and try to get through it. Also, I'm wondering if anyone knows where I can get one of those Medic Alert bracelets. I haven't seen them in any drug stores or anywhere else. I get copies of all my cardiologists notes from my visits and in reading my echo reports I've noticed that my LVIDd measurement went from 6.5 in early June to 7.5 at the end of August. I don't think this is good since the normal range as shown on the echo report is 3.5 - 5.3. Does anyone know what LVIDd stands for. I'm guessing it means "left ventricular internal diameter diastolic" but I'm going to ask my doctor at my next visit. I'm also nervous about getting a cold or the flu. My husband has a cold right now. If my doctor says yes, I'm going to get a flu shot next week. I live in Connecticut and this will be my first winter since I was diagnosed with DCM in June. Best wishes to everyone and thanks for all responses, Patti D, age 44. pajamapat55@aol.com


Jon's October 18 reply to Patti D's October 18, 2000 - Hi Patty, Personally, I would not recommend staying in bed at home when stopping your smoking. It may just give you time to brood about wanting a smoke. From a guy who smoked 20 years, Jon.


Tracey C, October 18, 2000 - Hi, Well, 3 months into this I thought I was improving. I've had episodes of chest tightness and hard heart beats but I woke up in the middle of the night with an elephant sitting on my chest. I couldn't get in touch with my doctor so I took a copy of my chart to a new doctor (Jon, thanks for the advice on obtaining our records) and am now holtered up, with an echo scheduled tomorrow. I have clear arteries so my question is does anyone else get chest tightness? I've read many of you get the hard pounding. I can now relate. Take care and God bless, Tracey. nuttytandt@aol.com


Jon's October 18 reply to Tracey C's October 18, 2000 - Hi Tracey, I have clear arteries and I get chest tightness, usually after a certain amount of exertion but occasionally just out of the blue. Jon.


Britta, October 18, 2000 - Hi, My name is Britta and I think I have CHF. Of course there are many questions and I don't know where to begin. First of all, I am so happy to have found this site. It has answered so many questions and the posts have given me hope. Let me give a little background info on my health before I ask my questions:
     I have had high BP for 25 years, which just this year was brought under control. Due to the untreated high BP, I have thickening of the heart, and the arteries around my heart are deformed (like corkscrews). I don't really know the actual diagnosis for this. I also have a MVI (Jon's note: I don;t know what MVI means) for 3 years now. I also suffer from 1 to 5 angina attacks a month. Two weeks ago I was diagnosed with fluid in my lungs and heart. My legs were swollen quite a bit. I was told to take diuretics and that was it. When I looked up fluid in the lungs on the Internet I came up with CHF. I know no one on this list can make an actual diagnosis but from what I read, my symptoms do match the criteria.
     How seriously do I need to take these angina attacks? I have a nitro spray, which I use every time, but my daughter thinks I should go to the ER when I have them. I have never gone to a doctor after an attack. Can MVI be corrected through surgery? What can be done to get rid of the fluid in my lungs and heart? I'm still experiencing swollen legs and shortness of breath. When should I be concerned and see a doc again? I was doing fine for 2 weeks and now my condition is worsening. My breathing never did get better from the diuretics. Again, my daughter thinks I should see someone ASAP, but I want to wait 3 weeks until my next follow up. What type of doc is the best to see? I live in Germany and don't even know what CHF is in German. Right now I'm under the care of a nephrologist. He is the first one to actually talk to me about my heart and has been the one to lower my BP. He diagnosed the fluid in my lungs and heart. I'd appreciate any advice or ideas. Thanks. lomsy@earthlink.net


Phyllis A, October 18, 2000 - Hello Jon and friends, First I also have been trying to get in touch with Lee R for months now to no avail. I pray she is alright. She is a very nice lady. Also, I wanted to let you know I received my letter from SSD today and I am still eligible for benefits. They say they will review from time to time but did not say how long between each review. This is a blessing. Let go, let God. phylcasurv@msn.com


Larry's October 18 reply to Blake's October 7, 2000 - Hi, I know how you feel. I'm 16 months out after my heart transplant. I was worried about infection during my first months back in the world. I even took a mask to the movies. However, the only place I wear a mask now is when I go to the hospital to see someone or when I go back to my old floor at UCLA to see staff. Your concerns are right on. Ask about the flu shot and see if it's ok. Good luck! nanotyranus@aol.com


Mike W, October 18, 2000 - Howdy folks, Just today I saw a new cardiologist (original moved away) and he blew my mind. I was with him for about 5 minutes when he started to exclaim in amazed horror that I had not been given a heart cath by my original cardio doc and that I needed to have one and that we should talk about the possibility of a heart transplant! Yikes! I know this disease is progressive but hey, I was diagnosed 3 years ago with an EF of about 30% (by echo) and have been symptom free, with no SOB, edema or fatigue since about a month after diagnosis and starting my meds, exercising, watching sodium and all that good stuff.
     My question is, have most of you guys had a heart cath? Am I alone in not having had one? I am terrified of such stuff so I'm just trying to figure out if I'm just trying to escape the blood and terror stuff or maybe this guy is jumping the gun a bit here. Mike W. mikeyw@soholinux.mine.nu


Jon's October 18 reply to Mike W's October 18, 2000 - Hiya Mike, Your new doc sounds about 5 yeas behind the times, literally. His way is the old way - get a cath right away whether you need one or not and talk transplant before you even know how the patient really is. Don't panic, just go to back to looking for a new CHF doc. You may or may not need a cath but no doctor should assume that one is necessary just because you have CHF. Jon.


Sharon P's October 18 reply to Christy P's October 18, 2000 - Hi, After the completion of my cardiac rehab program I was told by the cardiac nurses to do the same things which Jon covered in his response to you. I was also told not to exceed 15 to 20 beats over my resting heart rate, which is 55 to 60. When I get to the max on the treadmill where I am very comfortable, at best my rate is 75. I'll go for a longer time on the treadmill rather than trying to increase my heart rate. It also gives me a great sense of accomplishment the times I am able to go a little longer. Blessings, Sharon P. sparker103@home.com


John, October 18, 2000 - Hi, Does anybody know what to do when all combination and even high dosages of diuretics do not work at all? The Manual mentions diuretic resistance, but what do you do when you have it? jsbarrie@bellatlantic.net


Jon's October 18 reply to John's October 18, 2000 - Hi John, I assume you have CHF. I am also assuming that you have reduced your dietary sodium intake to extremely low levels (500mg daily) to remove the action of sodium in fluid rentention.
     When Lasix stops working, several steps are possible. First is a combination of zaroxolyn and Lasix. Next, you might be checked for dehydration or low blood volume in your body. Different diuretics actually act on the body in different ways at different locations. One may work when another does not, regardless of dose. Next would probably be to move to Demadex. Next would be to try Bumex. Endecrin might be tried, having a different action than most loop diuretics. Next is to check kidney function. Failing kidneys will block diuretic action. Next might be an inotrope, whether as a one-time "jolt" or intermittently to stimulate the heart's strength of contraction, allowing stronger heart function to remove the fluid "normally" rather than in the artificial way diuretics work.
     My advice would be to see a CHF specialist who should walk you trhough these options and probably a few more besides, and talk with you to see what should be tried next. It may even be that more afterload or preload reduction would allow your heart to remove more fluid on its own. Jon.


Christy P's October 18 reply to Jon's October 18, 2000 - Hi Jon, Thanks for all the exercise info. I've been walking along at whatever pace I could, aiming for 30 minute stretches. I purchased the heart monitor only so I wouldn't set my ICD off because of exercise. To my surprise, my heartbeat doesn't elevate to a level of concern for the ICD so I had concern over nothing. Thanks for the reassurance that the best I can do is what I've been doing - keep on walking. ;-) Christy, age 42, DCM, ICD. breezip@hotmail.com


Krista, October 18, 2000 - Hello everyone, I finally stopped procrastinating and started a journal yesterday documenting my most recent visit to the doctor, medication changes, symptoms, etc,... I have started a Word document which I am vowing to enter some sort of passage into every night even if it is just to say that I felt great today. I just wanted to pass this idea along to anyone who had not thought of it since it's a great way to keep track of all that goes on. Our memories often fail us and we often have a great load of information to digest and remember. This way, I can e-mail it to people if necessary, or print it out and give it to my doctor to keep better track of my symptoms and how they seemed to develop. I also wanted to find out if anyone has done something similiar, which I'm sure they have. Do you have any pointers or tricks for a better journal? Any recommendations would be more than welcome. Krista. itkristalosey@earthlink.net


Britta, October 18, 2000 - Hi, I just wanted to clarify that MVI is Mitral Valve Insufficiency. Sorry for the confusion. lomsy@earthlink.net


Robin S, October 18, 2000 - Hi, I am looking for a heart failure specialist in the Indianapolis area. Does anyone know of a good one there? Thank you. RNStreaty@aol.com


Robin S, October 18, 2000 - Hi, Has anyone experienced heart failure to the degree to which you are unable to stand or even walk? My ejection fraction is 10%. Is this typical and is this what I should I expect and does it get worse? Thank you. RNStreaty@aol.com


Jon's October 18 reply to Robin S' October 18, 2000 - Hi Robin, Can you give a bit more info so people can give better answers? It's hard to know how much is too much and how much is not enough when posting, isn't it? ;-) Maybe if you know, you can tell us what caused your CHF, how long you've had it, what meds you are on and any other test results like <Vo2max; anything you can think of that may help us get a handle on your situation. Thanks. For what it's worth, I started with an EF of 13% and am still here 6 years later. Jon.


Leland Y, October 18, 2000 - Hi to everyone, Unbelievable, but it's been 17 months since the "episode" and today I had an echo and electrolytes lab test. Preliminary results: my EF is 30-40%. I was glad the echo was scheduled about this time. My grandson's second birthday is October 23 and we intend to be there in Reno, Nevada. So now I have clearance to go to an elevation around 4,000- 5000 feet. Mentally, I feel good about going. My weight is holding good at 143 (down from 170 when the "episode" occurred. Incidentally, my blood sugar level has gone down also. I am not a diabetic, but the FBSs have been in the 130-140 range. Now we attribute the high readings due to all the summer fruits that were so easily available. I thank the good Lord for watching over me these past months. Leland. LLYEE@socal.rr.com


Holly's October 18 reply to Britta's October 18, 2000 - Hi Britta, Mitral Valve Insufficiency is usually very fixable with surgery, when it gets severe enough to warrant surgery. The valve can be repaired or replaced, depending on what's wrong with it. Symptoms are those of CHF: shortness of breath on exertion, fluid retention and extreme fatigue. Fixing the valve can result in immediate relief in severity of symptoms. Get thee to a cardiologist! hjw@radix.net


Donald G, October 19, 2000 - Hi Jon, I'm leaving on a 10 to 14 day vacation and e-mailed our October newsletter tonight to our megaheart members. I thought many of your visitors might like to visit www.megaheart.com and click on the newsletter button to receive a complete Thanksgiving dinner meal planner with all recipes for a total of fewer than 160mg sodium. Thanks, Don Gazzaniga. don@megaheart.com


Glenda, October 19, 2000 - Hello, I am new to this site. I'm a 44 year old woman with left-sided CHF and I live in Beijing, China with my family. I travel to Dallas, Texas for check-ups and have a question about air travel - Dos and Don'ts. The comments about wearing gloves and masks in US are really funny. China is a place that normal people with no health problems are given a list of warnings to prevent diseases. First, please advise on air travel and I also need a good CHF doctor in the Dallas, Texas area. Also, I would like to chat with anyone interested in my life in China with CHF. gnajari@hotmail.com
 
Jon's note: Have you read the Flying with CHF FAQ page?


Wayne S, October 19, 2000 - Hello everyone, I really try to exercise a little every day and for me it really pays off. Sometimes I get a little frustrated when I have to stop but I guess it goes with having CHF. May everyone have more good days than bad days. frances@blkbox.com


Freddie B, October 20, 2000 - Hi, I am doing well for a change. I know this note is long overdue. I finally received a heart transplant, praise the Lord! I was transplanted on September 13 between the hours of 3 and 7 AM. I have had no rejection problems and am feeling better each day. I have more energy than I have had in a long time. The only problem that I have had is adjusting to the medication and getting over the operation but that too is getting better. It took a 7 month stay at Duke to get the heart but it was worth it. I received a very healthy heart and with God's grace, it should allow me to reach a ripe older age.
     To all at Jon's Place who has been wondering where I have been, please forgive me for not keeping in touch during the past several months. Susie T, you are an angel. I pray that God will shine His grace on you and improve your health. If anyone has a question to ask me about what I have gone through, send me an e-mail and I will answer the questions through Jon's Place. Freddie B. fgbatten@attglobal.net


LaCinda, October 20, 2000 - Hi, I have a question about getting my medical records. I am told that they can only be released to another doctor, not to me. Is that true? The reason I am asking is I am now looking for a new doctor. When I called him last week and told him I couldn't breathe and asked if I should take another Bumex for the fluid, I felt like a balloon. His nurse came back to the phone and said the doctor just thinks it is your "anxiety." Huh? What? I think when you are a woman they love to blame everything on emotional problems! If I am anxious, and I'm not, is because he is making me so frustrated. He said there is no reason for me to get a flu shot. Huh? This was caused by the flu, my cardiomyopathy. At my last visit, he didn't even listen to my heart! I don't know what to do now. I want to find another doctor who will listen to me so I want my records. How do I get them? Ldearmitt1215@cs.com


Jon's October 20 reply to LaCinda's October 20, 2000 - Hi LaCinda, Lose this doctor fast. Get a flu shot as long as you do not already have the flu. Men are also often told their pain or health problem is psychological when it in fact turns to be quite physical. This is a result of poor teaching at medical schools rather than gender bias, although I wouldn't doubt that such bias is common also. About medical records, remember that I am not a doctor and I am not a lawyer. With that said,
     You have a legal right to obtain a copy of your complete medical record from any institution at any time. They can charge you for making the copies but they have to cough them up or you can take legal action against them and you will win, period. State law is best to use if possible. The first thing you need to so is call your state Attorney General's office and find out the name, number and date of any state laws guaranteeing you a copy of your medical records, and also what you must do to make your request legally correct. For instance, in Pennsylvania, The Medical Record Patients' Rights Act of 1998 went into effect April 19, 1998. Most states have passed similar laws in the past 10 years. "State Health and Safety Codes" may also contain detailed laws on your rights to your records. Many laws require that you be allowed to inspect your records within 5 days of written request and that you be allowed to receive a copy of your records within 15 days of written request. Some states limit charges to 50¢ per page. As you can see, knowing your own state's laws is critical to success in this matter.
     Be aware that members of state medical associations may also be bound by even more rules regarding proper treatment of patients, including access to records. I would contact my state's medical association on the phone and ask what their members are obligated to do for me as a patient seeking my own records. All doctors who belong to the AMA also are bound by the Principles of Medical Ethics of the American Medical Association. Call them and find out what rules apply to your situation. Your local county medical society also may have rules binding physicians in its jurisdiction. Be aware that you can also obtain medical records (although they may not be complete) from your health insurance company, which must tell you what doctor or institution supplied the data to them.
     Most people feel helpless when denied access to their medical records. This is because - just like in getting proper CHF treatment - you have to educate yourself about your rights and about what constitutes proper treatment. In this case, the law specifies what is proper and what is not, and the law is on your side. Doing one or two days of phone research (or web research if you use only official sources) will give you the upper hand on this one, believe me. It's worth it, don't you think? Your doctor is probably not aware of applicable laws and rules, since he obviously has more ego than intelligence. Hit them with specifics! This is the key. It is intimidating to them and their staff when you know the legalities better than they do.
     Above all, always be polite. Beat them over the head with polite legalities, is my advice. You'll win because you do have the right to your records and you have shown them that you can prove you have this right. They will assume you have contacted a lawyer, especially if you type this info up and take it with you so it looks official. Do not ever let them see it, just quote it to them. Do not confirm or deny that you have received legal advice. Merely say that you have been advised,..., and that you are not obligated to say anything further on your sources at this time. Be polite, be official, be firm.
     How to approach them? This is how I would do it but I have not asked a lawyer about this. (I may be starting another FAQ page, huh? <g>) Advise the doctor's staff over the phone quite nicely that you have been advised that you have a legal right to a copy of your medical records - refusing at any time to tell them who advised you - and that you would like to pick such a copy up on such and such a date at such and such time of day, and that you will be happy to sign any forms when you come to pick it up. Sweetly ask, "Is that okay?"
     If they say no, take at least one friend or associate (I recommend 2) with you for witnesses and visit the doctor's office during their normal business hours - not too close to end of business day. Then and there, request a copy of your records and sign whatever you have to sign to get them after reading the forms you are asked to sign. Be sure you really do understand anything and everything you sign. If anything seems odd, ask if you can cross out (leaving the crossed-out portion legible but clearly struck through) whatever part of a document you consider improper, then initial and date it, then sign at the bottom. If they say you have to sign a form and then wait till next week or whenever to pick up your records, be sure to get them to state out loud in front of your associates exactly what date, including day of the week and time of day, that you can pick up the copies. Take notes on the spot, recording everything on paper. If they will say only that office "policy" prevents them copying records, be sure to ask if they are aware that such a policy violates your rights under state law.
     If they still refuse to cough up your records, this is the time to ask very specific questions and be sure your associates hear the answers and understand what is being said. It is best to get the office staff to repeat themselves several times on each question. BE NICE. Ask why they will not give you a copy. Ask under what state or federal law they claim the right to deny you a copy of your records. Ask them if they are familiar with the state law (which you have the name, number and date of). Ask if they are familiar with the AMA's rules on the issue. Ask if they are familiar with the state medical society's rules on this. Ask if they are familiar with the county's requirements. You get the idea. Go through the whole list one at a time and get an answer to each question in front of your associates. Make sure the staff and doctor realize that you are going to be the biggest but most polite headache they have ever had if they don't get with it.
     If none of this works, call your state Attorney General, the AMA, county medical society, state medical society, and make formal complaints, also placing requests for help and investigation into this doctor's practices. It won't be long before you have those records. Jon.


Kat H's October 20 reply to Walter and Hedy K's October 16, 2000 - Dear Walter and Hedy, Thank you for your response. This fits with my friend's experience as well. It seems to imply that a pacemaker or similar device will increase blood pressure but apparently, medication to lower that pressure is the appropriate response. Yet I am told I don't have the option myself when others do. Am I alone? Does anyone else have severe arrhythmia also but are told "no pacemaker" (or similar device)? Any other reason given besides what I was told? If it helps, my friend's blood pressure is considerably higher than my own. My blood pressure without medication at the highest is 138/70. With meds, it is 90/50. Thank you, Kat. helmicks@intelos.net


Mike, October 20, 2000 - Hi, Review of the dosages of meds you are taking should be made by your doctor if you encounter any sudden change in your condition. I recently experienced a period of excessive fatigue. After reviewing my most recent blood work, which was normal except for an elevation of uric acid, my doctor drastically reduced my diuretic dose. The result was a dramatic change for the better in how I feel. The same has taken place in the past by elimination of some medications and reduction in dose of others. The point of all this is that once your medication has been adjusted to a level suited for your condition, that level is not carved in stone. Mikemjx@aol.com


Jon, October 21, 2000 - Hi everyone, AT&T had a core router go down and my ISP runs off it so I have no way to receive posts until they re-route all that traffic. I'll be back as soon as possible, probably Monday. So it goes (big sigh). Jon.


Jon, October 23, 2000 - Hi everyone, Since my ISP still hasn't gotten back onto the Internet backbone yet, I'll explain a bit further. My main ISP connects through AT&T, which is one of the big 3 backbone Internet providers. I still have dialup access to the Internet via Prodigy, a service we are keeping until we are confident the other ISP is going to fill our family's online needs. However, my access to my e-mail at jonsplace.org - including posts from all my web site forms - relies exclusively on the ISP that is currently down. So I can post myself via ftp but cannot receive your posts, thus I can't put them up, nor can I use my jonsplace.org e-mail since I set it up to run through the ISP that is down (for technical reasons). If you have something urgent, please e-mail me at misterbooboo@prodigy.net but remember that I only check that address when our regular ISP is down, so don't rely on it later.
     My ISP is run by the same guy who hosts my site but my site stays up because he hosts primarily businesses and has a backbone connection to the Net through 2 of the 3 major backbone providers rather than one, like his ISP service. That way, if one goes kablooie like AT&T did last week, his customers still have functioning web sites. Jon.


LaCinda's October 24 reply to Jon's October 20, 2000 - Hi Jon, Thank you for the info on getting my records. I am writing for them tonight. I am in Pennsylvania and I am gonna research that law you mentioned. A million thanks, LaCinda. Ldearmitt1215@cs.com


Anna, October 24, 2000 - Hi, I need advice on Social Security Disability. Two years ago I was diagnosed with dilated cardiomyopathy. I had an ejection fraction of 15%. I was extremely fatigued but my doctor said to keep working. After being on all the medications and supplements, my heart has shrunk and my EF has gone up. At my last checkup it was 40%. This made me very thankful and happy but the fatigue has persisted. I feel like all I do is go to work and sleep. I teach severely disturbed teenagers and many days, by noon I feel like I can't go on. I take a lot of sick days. I don't have the energy to exercise or fix decent meals but I feel trapped. I'm single so I have to have a source of income. What I want to know is, can I possibly qualify for SSD with an ejection fraction of 40%? Is there anyone out there who has? Thanks for any advice you can give me. snowyegret7@excite.com


Ruthie A, October 24, 2000 - Hi all, Just to let you know that I am still alive and kicking. I am having a terrible time controlling my blood sugar levels, even though I am doing everything they told me to do. Since I am a new diabetic, my doc is rather cautious about doling out more meds until she sees whether I have success with just diet and exercise. It doesn't seem to be working and I am starting to feel pretty crummy. In the meantime, I had a couple of bad CHF days which made me feel awful. I think the CHF and the diabetes are feeding off each other! Anyway, this is a new week and we will see what happens.
     On another note, I have a new e-mail address effective immediately. Happy Fall to all, Ruthie A. rlaba51@yahoo.com


Marilyn C, October 24, 2000 - Hi there, I am having a doozy of a time. The specialist upped my Bumex to 2mg a day, but since Friday I've put 6 lbs of water on, and breathing is once more a chore. I called my PCP and he'll get back to me. Funny thing about this CHF - I went 3+ years without so much as a blip, but the past 2 months have been a riot. I don't want to let it get as bad as last month (+10lbs), but this is getting crazy. I know you younger folks have battled this yo-yo syndrome before, but it's new to me. How do you deal with the fatigue and just plain yucky feeling you have? I am thankful for a place like this so we can blast off occasionally. Talk to you later, Marilyn C. macook500@cs.com


David A, October 24, 2000 - Hi, From my earlier posts you may (or may not) recall that my doctor had been bumping my Coreg dose up from the standard 25mg per day taken by people of my weight. My final dosage was 37.5mg twice a day and my BP usually runs in the low normal range of about 107/62 or so. Supposedly, it was thought that this increase in Coreg dose may suppress PVC's that I get, some times more often than others. So far it has not helped. All the other meds I take are the usual ones for CHFers.
     I blacked out September 15th and again on October 19th. Both times were extremely brief and my ICD did not fire but I really hit the floor with a loud report. After going to the emergency room and seeing my doctors that afternoon and the next day, plus having x-rays and a carotid artery ultrasound exam, they have not been able to pinpoint what the exact cause behind my blackouts were. My Coreg dose has been reduced back to 25mg twice a day and I have had no further blackouts. My blood work has been in the normal range for electrolytes and such, but my energy level has not returned to the level it was prior to the blackouts.
     Has anyone gone through a similar experience? If so, what was the outcome and how long until you felt better? Thank you, everyone. DEZEN@worldnet.att.net


Patti D's October 24 reply to LaCinda's October 20, 2000 - Hi LaCinda, I would get a new doctor ASAP and have him get your medical records from your former so-called doctor. My doctor isn't a CHF specialist like everyone recommends but I really like him and when I bring a whole page of typed questions with me he reads each question out loud and answers it. If my husband or I have any problems understanding his answer, he explains it again. Also, I have requested and received a copy of all my medical records at no charge including my doctor's notes of each visit, my echos, and my bloodwork. There's no reason for a doctor to not give you a copy of your records unless he's not telling you the whole truth about your condition. My doctor seems to appreciate the fact that I read his notes and look up information on the Internet to understand the illness, treatment, and prognosis more fully. Good luck finding a doctor as great as mine is, Patti D, age 44, CCM. pajamapat55@aol.com


Sharon J W's October 24 reply to Freddie B's October 20, 2000 - Happy birthday to you, happy birthday to you, happy birthday dear Freddie, happy birthday to you! Congratulations! delwill@gateway.net


Pauline, October 24, 2000 - Hi, Has anyone read the book, "The Journey" by Brandon Bays? I read it and also attended one of her Journey Workshops in the UK recently. I would recommend it to anyone who needs some inspiration and comfort. chloe276@aol.com


Beverly C, October 24, 2000 - Hello all, I just got home from my third heart cath in the past 10 months. My problem is restenosis of the stent in my LAD. It was back to 80-90% closed. This experience at Presbyterian (Dallas) was far better than the smaller hospitals in the Plano,Texas area where I live, just north of Dallas. My problem is that I have begun to have aching in my chest today and my blood pressure dropped to the 80/40 range. I felt lightheaded and weak, and that is why I checked my BP. I refused a recommended bypass and they just did an angioplasty to try and hold off until January, when they will begin to radiate the inside of stents in my area. With my scar tissue problem, I would just scar up the bypass grafts. What do you think this chest aching could be? It has stopped this evening and my BP went back up some. Thanks, Beverly. macmember@earthlink.net


Linda G, October 24, 2000 - Hi, Please say a prayer for my landlord's wife Renee, whose husband Ed died of SCD (Sudden Cardiac Death). He died in his sleep; a blessing, I'm told. He had 4 heart attacks over the years, also had bowel cancer and just last week had a neck surgery for clogged arteries but he did not eat healthy - just meat, french fries and desserts all the time. If you have a loved one with heart disease and heart failure please help them to change their bad food habits. Does anyone have any advice on how to cope with the loss of a friend? God bless you all, Linda G. a3a65689@telus.net


Jim, October 25, 2000 - Hi, I think I have a new one for you. Has anyone had any problems with unusual tingling or prickly sensations occuring in your arms, legs and back. I have and it's weird. I feel like I am being stuck with hundreds of needles or being shocked. I am wondering if it has anything to do with the Betapace I'm taking. If anyone has experienced anything like this, I would certainly like to know. jimhall@alltel.net


Wayne S, October 25, 2000 - Hello everyone, I am taking Coreg, lotensin, a diuretic and potassium. When I first started my medicine, I felt terrible. The longer I take them, the more used to them I get. If you feel bad at first, hopefully you will get better. Now I live for each day. I am very thankful not to have any other health problems. I hope that every one of you keep the faith. I read every post and realise that it is really nice to know that other people just like me have trouble exercising and sleeping and are salt free. frances@blkbox.com


Marlene, October 25, 2000 - Hi Everyone, This my first time to the page and my first episode of CHF. Has anyone out there experienced extreme leg pain (even when there is no swelling)? My doctor seems to think it is unrelated but I am not so sure. If you know of a good doctor in the Cleveland area, I would appreciate a name. It is nice to know that I am not alone and that people do care! Thanks for your support. Marleypar@aol.com


Thelma's October 25 reply to Anna's October 24, 2000 - Dear Anna, Your situation sounds so similar to mine! This CHF has not made life very easy for any of us. I was diagnosed a year ago this past summer with an EF of 30%, with no change since. My cardiologist thought I should go back to work part-time and wouldn't fight for me being disabled. So I am struggling as a single person working part-time to make ends meet and the rest of the time I'm exhausted. I was denied SSD twice and am so frustrated and feeling like no one cares, and what am I to do?! My lawyer won't even fight for me! It is very difficult for me to take care of every day stuff, like cooking healthy meals for myself, clean house, and most important, exercise. My feeling is that I should be considered disabled on the fact that I'm not able to maintain full-time work but I guess that is not the case. I do understand Anna, and I hope someone out there has answers for us. Thelma. Tcull@prodigy.net


Jon's October 25 reply to Thelma's October 25, 2000 - Hi Thelma, Here are a few ideas from a guy who was also rejected for SSD twice (with an EF of 13%):

  1. Speak with your federal Senators and Congressperson. It is election time - do it TODAY! They want your vote, do it now. My Senators both played a substantial role in getting me SSD
  2. Sit your doctor down face to face and tell him flat out that he is ruining your life. You're female - use it - CRY all over his exam room! Remind him that he is that he is sworn by his own Hippocratic oath to do no harm. He is violating that oath by paying more attention to numbers and outdated medical school training than to his own patients, who are real people with real lives and real problems. Sometimes doctors don't mean to be jerks, they just forget that we are real people and that a small action by a doctor can actually ruin a person's life - in this case, a small inaction.
         Remind him that if you can work but then are unable to do anything else at all because of fatigue from work (make a long list of things you cannnot do and take it with you), then what good is being able to work? Work is meant to support our life away from work and to give us a sense of satisfaction and helping others. Without a life away from work and with work terribly difficult due to fatigue, work serves no purpose but to grind a person's soul to dust. Also, ask him how well he thinks he would live on your part-time income!
         Make him answer these questions - do not let him shake his head, change the subject, say oh well or so it goes or any other such nonsensical non-answers. Look the sucker in the eye and make him answer! You are as much a real and important person as he is and you must make him understand that basic truth if you are to get any help from him. If he turns out to be hopeless, fire him on the spot and get another doctor. He works for you!
  3. Ask for a <Vo2max test. With an EF of 30%, you should have already had one! This result may really help you with SSD
  4. Fire your lawyer today. Get another one who does nothing but SSD cases
  5. Turn to local churches for help housecleaning and cooking. I would personally recommend trying Nazarene churches. They are more inclined toward outreach. If you have a local Nazarene church, let me know and I can have a letter written to the pastor for you by other pastors
  6. Keep track of how you feel and what you can and cannot do each day. This means carrying a notebook with you at all times and tracking everything! Doing this halfway is useless. Done thoroughly, this will quickly become a diary of illness' effects that can be used by a lawyer or doctor to help persuade, to justify your Disability

Anita's October 25 reply to Freddie B's October 20, 2000 - Hi Freddie, Congratulations on your new heart! I'm glad to hear you are doing well. I was transplanted at Wake Forest University Baptist Medical Center in April of this year. I am 6 months post-op and doing well also, with no rejection thus far. Just like you, the biggest challenge is getting used to all the meds. May I ask why you were hospitalized for 7 months prior to transplant? Were you on an assist device? At which category were you listed? I was a Category 2 (waiting at home). Do you live near Duke Hospital? I live within 30 minutes from WFU Baptist Hospital, which makes it really convenient for all the follow-up visits. I would love to hear from you, Anita. abcox@triad.rr.com


Patti D's October 25 reply to Robin S' October 18, 2000 - Hi Robin, I am 44 years old with IDCM and an estimated EF of 10%. I realize that everyone's situation is different but after 4 months of medication, my EF hasn't gone up. However I no longer have shortness of breath and while my energy level isn't what it was a year ago (I was diagnosed in June of 2000), I am able to walk, grocery shop, do laundry, etc. I do sleep more and get tired fairly easily but I realize that I have to accept that. When I first starting writing on this site, everyone encouraged me to stop concentrating on my low EF number and to concentrate on having a positive attitude. Knowing that your EF is only 10% can be very scary but I have managed to stop thinking about it and I've been keeping as active as I can. Good luck to you and if you think you need it, see if your doctor is willing to put you on an anti-depressant. My doctor started me on Paxil in September and it definitely seems to help me have a more positive outlook. Patti D. pajamapat55@aol.com


Patti D's October 25 reply to Mike W's October 18, 2000 - Hi Mike, I obviously don't know whether or not you need a catheterization but I'll tell you about my experience. I am 44 and was diagnosed with IDCM in June, 2000. My EF was 10% on echo and was still at 10% on my second echo 3 months later. My doctor said I should have a cath so I agreed to it. I had an appointment with the doctor who would be doing the procedure on Monday 10/23 and he explained the procedure to me and answered my questions. I told him how I had never been seriously sick before and had never been in the hospital before and how even the thought of an IV scared the pants off me and the thought of a tube going through me into my heart was enough to make me pass out! He told me they would give me as much sedative as safely possible and was honest about any pain I might feel from the novacaine needle and the stitches afterwards. My catheterization was scheduled for Tuesday morning 10/24. Needless to say, I wasn't able to sleep Monday night and probably got a total of about 4 hours sleep.
     Between the lack of sleep and the sedative, I dozed through most of the procedure and can honestly say that I barely even felt the novacaine needle. I was back in my room by 11:00 AM and stayed awake long enough to eat lunch but after that I slept until I was discharged at 5:00 PM. I realized that everyone reacts differently but for someone like me who is so afraid of needles and sqeamish at the sight of blood, I was able to tell my husband that it had been a "piece of cake." The only pain I felt (and it was minor) was when the nurse took off the tape that had been holding the IV on. If you do have the cath, be sure to tell your doctor about your anxiety so he can adjust the sedative accordingly. Good luck to you, Patti D. pajamapat55@aol.com


Patty K's October 26 reply to Patti D's October 25, 2000 - Hi, I saw that you were diagnosed with CHF last year. I was diagnosed last December (1999). Believe it or not, I had gone to Israel to tour the holy land and came back sick. I thought I would die. When they told me I had an enlarged heart, I thought, "big deal!" Man, was I ever wrong! I was a foster parent, taking 5 kids at a time; all infants who were crack babies. I have gone from doing all that the babies needed and my house, homeschooled my 9 year old and kept all my appointments on time to someone who can't hold her head up after 5 at night. I cannot believe the exhaustion, plus the fear of having something go wrong.
     Like you, I never had any thing wrong before. They still don't know what triggered it. It makes me feel so bad that I can't do my household work anymore. Just 2 weeks ago my husband and I were in a bad accident for the first time. Talk about horrible chest pain - but from the seat belt. I must say that I thank God I had it on. I was in a Honda Civic. I would have most definitely hit the dash. Can you tell me if there is any danger to the heart after trauma such as this? I know I worry too much. My level was 33% and over the months has increased to 38%. Is age 45 and CHF with 38% eligible for SSD? Thanks for any info. pkamhs@yahoo.com


Anna N's October 26 reply to Thelma's October 25, 2000 - Hi Thelma, Your story sounds very familiar. Thanks for sharing it; it helps to know I'm not alone. And thank you Jon for your good suggestions. I hope both Thelma and I can use them to get somewhere with this. snowyegret7@excite.com


Jeanette's October 26 reply to David's October 24, 2000 - Hi David, You are not alone. I am on Coreg and when I was first diagnosed over 2½ years ago, I was experiencing low BP. I would not black out but numerous times I would just have to drop to the floor because my pressure would plummet for no reason to 70/40. My cardiologist said it was due to Coreg and lowered my dose from 12.5mg to 6.25mg twice a day. It worked wonders and I haven't had to drop to the floor since. If you read the Coreg side effects at Webmd, you would see that Coreg will do that to you; just one of many annoying side effects from meds for CHF and DCM. I hope everything works out for you and take care, Jeanette W. jeanette841@yahoo.com


Jeanette's October 26 reply to Jim's October 25, 2000 - Hi Jim, Are you taking by chance Coreg or Zestril? Both of these drugs can have that effect on you. I get tingling sensations in my extremities and it feels like they're going to sleep on you but that's impossible because you are using them. Mine are not too bad, no real pain but are annoying as all get out. Just a thought. Take care and God bless, Jeanette W. jeanette841@yahoo.com


Wayne S' October 26 reply to Thelma's October 25, 2000 - Hi Thelma, Sometimes it seems we really have to fight for the things that we are entitled to, such as Social Security. I get the feeling you have given up. I agree with Jon - if you cannot get help from your doctor or lawyer, fire them. They work for you. Social Security is not given, you paid for it. frances@blkbox.com


Randy, October 26, 2000 - Hi all, I'm a lurker and don't post often but I love this site. I've had IDCM for about a year and a half with a 30% EF and I have a question: Who doesn't?! I was driving to work yesterday and all of a sudden I had a tight feeling in my chest and it felt like I couldn't breathe. I had a pretty good case of tunnel vision going also, and it felt pretty strange for a minute or so. I went on to work and all seemed well with the world for a few hours and then it happened again. I was taken to a local hospital and my cardiologist ran an EKG that came out normal. He told me it might be a problem with my heart rhythm and referred me to another cardiologist who scheduled me for an EP study next week. Can anyone give me any information on a similar situation? I would appreciate any information. ransues5@aol.com


Cheryl's October 26 reply to Marlene's October 25, 2000 - Hi Marlene, I had really severe leg and foot pains while taking Zocor. The pains stopped when my meds were changed. I hope this helps, Cheryl. Garciaa@prodigy.net


Mike W's October 26 reply to Randy's October 26, 2000 - Hi Randy, By all means have whatever tests your doctor suggests but do you have any experience with anxiety or panic attacks? The symptoms you described could also be the symptoms of a panic attack; Just a thought, not a diagnosis. It looks like a whole bunch of folks (myself included) also suffer from emotional distress related to having CHF - either depression and anxiety/panic. I hope everything comes out all right with your tests. Peace, Mike Wafkowski. mikeyw@soholinux.mine.nu


Ophelia, October 27, 2000 - Hi All, I just came from a vacation to Dallas Texas to see my sister. Well, it was refreshing, although I seemed to need more sleep than ever. My doctor increased my Zestril to 40mg per day and I think that was the reason. I did not have to use masks or gloves on the plane <g> but I did feel claustrophobic on my way to Dallas, since the plane was filled to capacity. On my return, the plane was about 75% full and I didn't have anyone next to me, so it made for a more comfortable flight. I have quite a few friends in Texas but not all in Dallas, and the visiting from place to place made me tired. Since Dallas was not incredibly hot, I was comfortable most of the time; I just didn't go shopping as much as I thought I would since I get out of breath easily - one reason for the increase in my Zestril dose. My doctor is thinking about increasing my Coreg next week also.
     I think my greatest challenge was eating properly. I did not opt to cook and my sister cooks "whenever" so we ate out half the time. What I'm finding myself doing is questioning the waiters about the dishes; something I would never do before, I'd just eat and go. I never bothered about trying something new. These days, my appetite is no longer there and when I do eat, I have to be concerned about the salt. Does anyone out there have a decreased appetite?
     I just had to let you all know that I'm doing ok, and having more better days than bad. I think it's mainly because I'm starting to really pay attention to my body and knowing my limits, Ophelia. omclain@hotmail.com


Kathy, October 27, 2000 - Hi, I have had an EF of less than 15% for over a year, and I am on all sorts of drugs. What I want to know is for the past 2 to 3 weeks I've had a headache constantly. Does anyone know the cause, or anything other than drugs that I can do? Thanks. kctripper@aol.com


Patti D's October 27 reply to Patty K's October 26, 2000 - Hi Patty, I don't know if the trauma of the accident would cause any damage to the heart but I would suggest that you put the accident out of your mind. I'm assuming that you weren't seriously hurt so try to forget about it. The doctors don't know what caused my DCM but I personally think that stress played a part in it. I used to be a very easy going person and took everything in stride but then my husband and I sold off everything we owned and moved to Florida. This was not a spur of the moment decision. We had been planning it for 3 years. Well, within 2 months after we got there I realized I hated living there and felt like I had made the biggest mistake of my life. Unfortunately, my husband liked living in Florida so I wasn't sure if he would be willing to come back to Connecticut. I was so stressed out that I developed a rash all over my body that had to be treated at an ER.
     We did come back to Connecticut and shortly after that I started having symptoms and was diagnosed with DCM. Obviously, I was totally shocked because I had just driven my car 1600 miles and had felt fine. I tried to apply for Social Security Disability but was denied because my doctor said I could work and my EF is only 10%. Actually, I know he's right but we were planning to move from a rental house back into our own condo this month so I kept putting off going back to work. I had been working through a temporary agency and plan to contact them next week. I feel lucky that with an EF of 10% I feel as good as I do, but I don't think that your EF number should determine whether or not you can work. If you feel unable to work, let your doctor know and apply for SSD. Good luck, Patti D. pajamapat55@aol.com


Bill D's October 28 reply to Kathy's October 27, 2000 - Hi Kathy, Too much nitro can give you a headache. I wear a 0.4mg per hour patch from 3:00PM to 10:00AM. In between, I take Isosorbide Mono tablet (that's nitro too). The only time I get a haedache is when I put too many NitroStat pills under my tongue to dissolve there, Bill D. billdog@gate.net


Charlie's October 28 reply to Mike W's October 18, 2000 - Hi Mike, and anyone else who may be interested. On 8/3/2000 I went in for a cath - a so called "walk in the park." Well somehow the doctor said there was too much torque on the wire and to my horror I watched it cut open the main artery to my heart. I watched the blood start emptying into my chest cavity. To my horror it took them 20 minutes to get a surgeon into the operating room and do an emergency triple bypass that I did not originally need. Today I cannot breathe well since I have lost over 50% of my lung capacity. I am in constant pain from my chest being ripped open in an effort to save my life, for which I am very thankful. The moral of the story is that I don't like a piece of cake nor do I like walks in the park much any more. c_spall@yahoo.com


Diane P, October 28, 2000 - Hi, I just got out of 4 days at Shands. I had 48 hours of inotropic treatment and a cath which revealed that one of my bypasses was blocked but that didn't matter because the part of the heart that it fed was dead. The one vessel that was not bypassed is closed. I have had 3 MIs and a quadruple bypass after more angioplasties than I can remember. I was taken off 12.5mg Coreg and started 25mg lopressor twice a day to go with 0.25mg digoxin and 5mg Vasotec twice day but no diuretics. I was told to lose 50 lbs and excercise, but to stop when my oxygen saturation dropped below 90%. I am age 52 and have been on a diet for 40 years allthough my hubby and I are giving it our best effort, my history is not encouraging.
     What is my diagnosis? I have ischemic heart muscle in the front of my heart. My heart is enlarged to get the job done. My heart pumps well. The cath had my EF at 40%. I am tired and unless I drink at least 2 diet cokes in the morning, I can't do a thing. Sometimes 2 won't do it. No one has mentioned transplant since the first time I went there. They said we could get another couple of years out of my heart. A pacemaker would not help me. What do you think?
     I am afraid of another MI. I don't have any more heart muscle to lose. Both my last two MIs were not brought on by physical activity. Supervision must be more stressful than I ever thought. Input please? fjpage@n-jcenter.com


Jon's October 28 reply to Diane P's October 28, 2000 - Hi Diane, I hesitate to say this because it is nothing you haven't heard before but it's the unvarnished truth. In your situation, you need to lose the weight, quit dieting and change the way you eat forever, and exercise - starting with a supervised cardiac rehab class. You sound like you have, or are heading for, congestive heart failure but then again I'm not a doctor. Your doctor is the one who should discuss diagnosis with you. If he didn't, fire him.
     The diet cokes/caffeine to get started are a really bad idea. You are stressing your heart a great deal more that way! Leaning on crutches like pop with caffeine to "energize" yourself is one way you avoid doing the proper things to energize yourself, like losing the weight and exercising to increase your body's effective use of oxygen and energy. Do it right - for the long haul - and maybe you'll have a long haul to enjoy. It can be done, but nobody here is going to tell you it's easy. We can say that these things can be done because many of us have done them, while others here are still struggling to do them just like you.
     heart transplant will not be seriously considered as long as you are substantially overweight. It's that simple, no matter what they are telling you. Post-transplant meds cause weight gain and fluid retention, so they do not want extra weight around to start with.
     Be a regular here. I hope others will answer and also relate their own experiences in similar situations. I am in the minority here I think, despite the fact that I maintain the site. I have never had a heart attack or a clogged artery. So I hope others also address your concerns. Jon.


Denise, October 28, 2000 - Hi, I have had DCM for over a year now. I have just finished a study with a new kind of pacemaker. I was not getting any better. My EF is still 17% and my <Vo2 is still 13%; But I was so happy to find that I was one of those whose device was not turned on - a control patient. So I just got my biventricular pacemaker turned on a couple of days ago and I already feel better. I found that I could fold 2 laundry baskets of towels without having to stop for a break, which is a real breakthrough for me. If I can help anyone with questions, I will try. This new pacemaker has taken 2 others off the transplant list. Wish me luck. madburke@bright.net


Jon's October 28 reply to Denise's October 28, 2000 - Hi Denise, Good luck! <g> To everyone else, there is information on this type pacing for CHF on the ICDs & More page. It is expected to have the potential to help perhaps 1 out of 4 CHFers. You will get benefit if your heart's chambers are beating slightly out of synch, so to speak. If not, you would get little or no benefit. Check with your CHF specialist to see if you might be helped by such a pacer. A regular doc or cardiologist is not going to know! Just be prepared for the price tag if you are not 100% covered by insurance for it or in a trial - it's expensive!
     Here is a standing offer to anyone: If you write up as best you can your experience with any CHF treatment or test - pacer, ICD, LVAD, heart transplant, cath, echo, Vo2max, chemical stress test, whatever - I will seriously consider adding it to my site one way or another. This is to expand the "real-life" aspect of this site. The more different experiences - good and bad and in between - that are expressed for readers, the more prepared people will be when they face a similar situation. The main areas to cover (and you can chose to just cover one of them if you wish) are:

  1. The process leading up to it
  2. The actual experience of implant, testing, etc,...
  3. After-effects of the test or procedure - healing, recovery
  4. Effects on your life after recovery

Just e-mail me if you are interested. Jon.


Louise, October 28, 2000 - Hi, I talked to Jon the other day about my problem and he invited me to visit this site. I thank God he did. My problems so small compared to all that I have read. I pray for all but if ya'll don't mind from time to time I would like to share my little problems with you all. I think sometimes I need someone talk to who really don't know me. I have a fear of it going right back to my husband. That is the way a lot of my friends do and of course you can't tell all things to your children. Well, until then. God's blessings on all, Louise. louise8759290@yahoo.com


Jon, October 28, 2000 - Hi guys, More later - I've got to go shopping with my daughter. Here's hoping the feet hold out (she's a born shopper! <g>) Jon.

Jeanette, October 28, 2000 - Hi everyone, I went to my cardiologist yesterday and my heart is doing well. It is the rest of me that is falling apart. <g> He wants me to see a gastroenterologist because my liver function tests have been high. He doesn't think it is caused by the Zestril but will look into it. I see the specialist on the first. He also wants to put me on a cholesterol lowering drug due to my high triglyceride levels and low good cholesterol levels. What can I say, I have always been a "backwards kind of gal!" <g> However, he won't do that until we find out what is wrong with my liver. What a great birthday present to me. :-( Anyway, I just thought you would all like to know how things went. I am in good spirits despite worrying over what could be wrong with my liver. Well, take care and remember I am praying for you all. Jon, I read the MUGA SCAM and I fell down laughing! Bye for now, Jeanette. jeanette841@yahoo.com


Joe S, October 28, 2000 - Hi, Three months ago they told me I no longer have CHF, but I still have a scarred heart. Although I no longer get dizzy when doing many things, I still have to follow all the regimens as if I still had CHF. If I eat too much sodium I still bloat and if I lift anything over 20 or so pounds, I still get exhausted instantly. Also, they told me I would still have to have open heart surgery and my valve replaced. They did tell me though, that I have to wait until I'm 70. I'm 62 now. Ok people, does anyone know what the difference is between what I have now and CHF? I am thoroughly confused, Joe S. jes@stevensonlighting.com


Jim L, October 28, 2000 - Hi, I am wondering if any of you guys have had a similar experience concerning CHF. I was diagnosed with DCM about 2 years ago and was put on a mild drug therapy including Lasix, K-Dur, Zocor and Accupril. Things went so well up until a few days ago that I really started to think I was cured. I changed doctors and the new one put me on Aldactone and Coreg (3+mg). About a week ago it hit me like a ton of bricks. All of a sudden I can do nothing without losing my breath. My body aches all the time and I have absolutely no energy. To refer to the action of my heart as a "pulse" would be ridiculous. It flutters rapidly with erratic beats that seem to have no force. Have any of you folks had a similar experience? As an afterthought I did try to contact the doctor. He is never in his office and I explained my situation to his office supervisor. She said she would get back to me and never did. This is the same one that two different times didn't call in prescriptions that I needed. Thanks for listening, Jim. clocker131@home.com


Jon's October 28 reply to Jim L's October 28, 2000 - Hi Jim, If it were me, I would fire the doctor, see a different one and consider tapering off the Coreg even if it meant seeing an ER doctor to verify I could do so safely immediately. For what it's worth, Jon.

Thelma's October 30 reply to Jon's October 25, 2000 - Hi and thanks to Jon and everyone who responded to my concerns about being denied SSD and being too tired to work. Sometimes it's just easier to accept the status quo and not deal with all the paperwork, stress of lawyers and doctors, etc. As we all know, the energy is just not there. I'm going to try and make a go of working part-time but am going to seriously consider all the suggestions.
     On another topic, I am struggling with the low sodium diet and am thinking about cooking meals ahead for myself and freezing. Are there any excellent recipes out there that freeze well? I have perused the recipe section of this board and have all the low-sodium cookbooks. Any suggestions? Thanks, Thelma. Tcull@prodigy.net


Bill D's October 30 reply to Joe S' October 28, 2000 - Hi Joe, The symptoms of a leaking valve are similar to the symptoms of CHF. Are you going to a CHF specialist? I don't know why you have to wait 8 years to get your valve replaced. How's your insurance? If you get on Medicare and get a supplemental policy, it should cover everything. Bill D. billdog@gate.net


Donna Z's October 30 reply to Jim L's October 28, 2000 - Hi Jim, I agree with Jon. Fire that doctor ASAP and get one who will be there for you when you need him. Where I go, they have a message on their answering machince that says, "If this is an emergency press this button." They also have a few other messages for just speaking to the nurses and I can also get a nurse to answer my questions and concerns that same day, usually with in a few hours. Remember that you are paying the doctor. He is working for you and if you can't get any answers from either the doctor or his nurses, then in my opinion he isn't worth wasting your dollar on. Find someone new, Donna. dzak@worldnet.att.net


Joe S' October 30 reply to Jon's October 28, 2000 - Hi Jon, Your advice to Diane P was right on. I mentioned in my last note that I no longer have CHF but still have a damaged heart from Scarlet Fever at age 5. However, I am so much better than I was 2 years ago that I feel like a new person. It is all the result of exercising every day, eating no processed foods, eating low sodium, taking CoQ10 and tons of other things I got from you people, and finally moving to a high dry climate. It's a hard regimen to exercise every day but once you get into the swing, you miss it. Now I am going to increase my exercise to improve my physical condition. I still get winded when going uphill but the doc said it was because I don't exercised my heart enough. I have to get really winded. My hypochondriac mother would never let me play sports or anything and I am convinced this hurt me a lot. In my bio I mentioned that my murmer even went away when I worked hard at a job. One more comment and then I'll close: I sincerely believe all colas are very harmful, along with bleached flour. They are in the same catagory as MSG. Again, it's hard to give up the foods you love but with a little research and some fantastic new spices all foods can be made to taste great. Joe S. jes@stevensonlighting.com


Katie's October 30 reply to Freddie's October 20, 2000 - Hi Freddie, How wonderful to hear of an answered prayer. I can only imagine what the wait was like. May God continue to bless you and your new heart. I have met many transplant recipients here at University Medical Center in Tucson, Arizona. It was a long road for them but now all that come to our support meeting are doing well. One young woman has even had a child posttrasplant. What a blessing. Continue good days! Katie. lowbigflyer@www.att.net


Brian, October 30, 2000 - Hi, Where are the trials for Ventricular Resynchronization taking place and when might these devices be available? I'd be interested in any additional info. Thanks, Brian. BPGruber@yahoo.com


Jon's October 30 reply to Brian's October 30, 2000 - Hi Brian, You can access CenterWatch through a link on my Links page. Jon.


Davida S' October 30 reply to LaCinda's October 30, 2000 - Hi LaCinda, I agree with Jon and hope you have had progress by now. I would send a written request to the doctor's office indicating you are aware of your legal rights to obtain a copy of your medical records and you are willing to pay any charges for copying the records. Send the letter by certified mail and a cc notation at the bottom saying, "'CC: (your state here) Attorney General's Office". Send his copy certified also. Trust me, the doctor's office will take notice and realize you are a force to be reckoned with. A request for your medical records indicates to the doctor's office that you or someone will be reveiwing your level of care received and may even question this level of care. Based on your first post and the doctor's office response to your concerns, it's obvious your level of care should be questioned.
     I have never had any problem obtaining my or my husband's medical records, although the offices aren't always happy to turn them over. You are even entitled to copies of x-rays if you are willing to pay for them. My doctor's office charges $15 a sheet. I approach the doctor's office by simply making the call and asking "whose attention should I submit my written request for copies of my medical records and also what are the copying costs?" I approach it with confidence as if there is no question that I am entitled to obtain my records. If all else fails, find a new doctor fast and have his office request a copy. Then in return, you can obtain a copy of the copy he receives because when you look at it you have a right to be concerned about your health and you should find another doctor fast. cavalier_1@msn.com


Jon's October 30 reply to Davida S' October 30, 2000 - Hi, Unfortunately you cannot count on getting records from a previous doctor by asking for a copy from your current doctor. A doctor is only required to give you records that were made while you were under "his" care. Trust me on this. I have been through years of Workman's Compensation litigation and trial, and you must request copies of your record from every single doctor, clinic, hospital and testing facility to get a complete set of medical records. Each one only has to copy the section of the record that is unique to their own practice - that's how the laws read. You just have to push until you get each section from each doctor and institution. The records are are legally yours. Jon.


Bill, October 30, 2000 - Hi, I have been lurking on this forum for a couple of years. I was diagnosed with DCM 3 years ago. After firing my first cardiologist, who claimed I had an EF between 20 and 25% (I don't think so), I got into a first class program at the Cleveland Clinic with a first class cardiomyopathy specialist. The Clinic correctly read my echo and catheterization test results at 35% EF. My doctor aggressively treated me with Coreg at 100mg total daily and Vasotec. After 2 years, my echos came back normal with normal wall thickness and normal ventricle size. My EF is now 55% and I am on 100mg of ToprolXL daiyy. The bottom line is that I am very lucky! At age 52, I have never smoked, never drank much and have always been somwhat active athletically. I am just plain lucky that my internist noticed an irregular heartbeat at a checkup which caused me to have further tests to diagnose the problem. I pray every day for the people on this forum so that they can have the luck I've enjoyed. I wish eveyone the best outcome and I deeply feel for their pain, suffering and anxiety. Good luck and God bless. bkell@erienet.net


Barb L S' October 30 reply to Anna's October 24, 2000 - Hello Anna, First let me say that I don't know how you're working at all. However, I understand the need to. Back in 1997-98, I had an EF of 10%. It had slowly gone up to 20% and stayed that way for 2 years. I was told then that I would need an ICD. I haven't received one. From the time I was pregnant in 1996 I had been attempting to get SSD. I had put into the system for many years and now I needed help. My echo in August showed that my EF was up to 47%. I was told that it was higher due to IV milrinone. After 2½ years of seeking SSD, I was finally awarded everything. The point is that even with my higher EF I'm on full medical SSD. My CHF specialist me why CHFers look to EF as an answer to our disease. I told him that it was the first thing we could understand. There more to it than that. My new doctor at Mt. Sinai has explained the right heart caths that I get in a way that we understand now. With his explanation we also understand my individual need to have them on a regular basis. So please see your chf specialist again.
     Every state is different as far SSI or SSD. I had a very hard time when I had applied for it. Now, even though I have fluid retention something terrible and am on more medicines, my EF is up. Listen to your body. Barb. Alikeys@hotmail.com


Jon's October 30 reply to Barb L S' October 30, 2000 - Hi, We look to EF as a measure of our illness (although we should not) simply because the rest of the world insists that we do so. SSD uses it as a strong measure of ability to work, and almost all non-CHF specialists (internists, cardiologists, primary care doctors, ER doctors) all use it as almost the only important measure of heart function. I know this from personal experience and from talking to thousands of people about it, including dozens of doctors of all persuasions. It's an attitude we are pushed toward from day one of our illness, and that makes it hard to overcome. Jon.


Carol M, October 30, 2000 - Hello, I'm age 57, a non-smoker and non-drinker recently diagnosed with CM and CHF. I had open heart surgery last year to repair an aneurysm of the LDCA. The surgeon - "while I was in there" - did a double bypass around the aneurysm taking one vein from the mammary gland and one from the leg. After surgery, while in recovery, I developed an arrhythmia problem and was given amiodarone. I remained in ICU for 4 days following surgery because they said my chest x-rays indicated a "complete white-out" whatever that is, and no one could figure out why.
     I was released from the hospital by mistake on the fifth day following surgery with oxygen saturation of 74%. Seven days later I was rushed to a nearby hospital ER in acute respiratory distress. My BP was 57/40, pulse 130, respiration 30 and labored, temperature 102.7°, oxygen saturation 37 on room air and 72 on 100% oxygen. I was intubated and placed on a mechanical ventilator. I remained on amiodarone another 2 days until it was determined that the amiodarone was causing pulmonary toxicity. The medication was discontinued and my condition began to improve, however the arrhythmia problems returned. I remained in CCU another 20 days on dopamine and dobutamine in an effort to raise my BP and lower my heart rate.
     I was hospitalized 5 more times in 3 months in respiratory distress, with rapid heart rate and low BP. Each time I was given oxygen, put on dopamine and dobgutamine and told that the effects of the amiodarone could remain in my system for 4 to 6 months. Six months went by and then I was told it could be 6 to 12 months. Twelve months went by and was told it could be 12 to 18 months. It has now been 15 months. When will this end or will it ever? I am sick and tired of being sick and tired!
     In the ensuing months I have had several EKGs weeks apart. Each one of these EKGs come out differently. One will show "Sinus Tach, Wide QRS Tach, Left Axis Deviation, LBBB" while the next will show, "Sinus Tach, V-Tach, Minimal voltage criteria for LVH, nonspecific ST and T wave abnormality, prolonged QT interval." The next EKG will show "Sinus Tach, V-Tach" with notes: "Ventricular rate has increased by 53 BPM, LBBB is no longer present." The next will show "Left axis deviation, LBBB." Every time I have an EKG it comes out different. Does LBBB come and go and then come back again? I am thoroughly confused.
     I also had a cardiac ultrasound, (is this the same as an echo?) which reported, "Enlarged left ventricle with also hypertrophy, enlarged left atrium, aortic root mildly dilated at upper limits of normal, paradoxical septal motion, tricuspid regurgitation and overall left ventricular hypokinesia with hypokinesia of the anterior wall as well, reduced ejection fraction approximately 36%." The conclusion was, "The patient has global hypokinesia with paradoxical septal motion with mitral regurgitation as well as tricuspid and aortic regurgitation." Again, I'm thoroughly confused. What does this mean?
     My current meds are Coreg 25mg daily, Lanoxin 0.25mg daily, Zaroxolyn 5mg every other day, Lasix 80mg every other day and Xanax 0.25mg three times daily and then of course K-dur for potassium and all that other good stuff, as well as nitro to deal with chest pain. My cardiologist wants me to have an Electrophysiology Study. After reading the patient's guide to this study, I find the prospects terrifying. I have a back problem that does not allow me to lay on my back for over 20 minutes without severe pain. The heart cath was bad enough, having to remain on my back. It seems that the EP study would be unbearable. Besides that, I understand that the EP study is done through veins, and not arteries as in a heart cath. I have very poor veins. Each time I go into the hospital I have to have a central line. No one is ever able to find a vein to just draw blood. Even the heart cath showed that I have "very small cardiac arteries and veins." I am also the perfect example of Murphy's Law and have been all my life.
     Maybe for the benefit of everyone concerned, my husband, my grown children, my grandchildren and even my cardiologist, I should just let nature take its course. Since we have no insuranace, why should I continue to drain my family of everything we've worked 40 years to build? I tired! You can't believe how tired I am. Well, now that I have vented my frustrations and you can all see what a crybaby I am, maybe someone has something to offer that can answer some of my concerns or even promises of a brighter future. seymour9@bellsouth.net


Jon's October 30 reply to Carol M's October 30, 2000 - Hiya Carol, You have come to the one place where a lot of people really do know how tired you feel and also many of us have been pushed to the brink of poverty and sometimes clear over that brink from our illness and its treatment. I'll be short and direct since you've had more than enough smoke blown your way already.

  1. Amiodarone is dangerous stuff. Period. Read this for more info. It can work wonders but it has to perfectly monitored by a true expert
  2. You probably should have been on steroids for the amiodarone problem from day one. If you were not, get another opinion from a doc experienced in amiodarone management. I very rarely say this, but you may want to see a lawyer at that point as well
  3. You need a different doctor now - 2 actually, an electrophysiologist and a CHF specialist, preferably in the same practive but in a practice not in any affiliated with the one your current doctors are in
  4. Your new doctors will take immediate steps to control and regulate your heart rhythm. This is a complex subject but you may need a device to regulate your rhythm. Once under control and with any serious valve leakage repaired, you will fell sooooo much better! Your CHF may even dry up, so to speak
  5. Here's some info from Mayo Clinic on LBBB: "Bundle-branch block involves a problem with the system that regulates your heart beat. It doesn't mean you have blockage in your coronary arteries. Your heart has specialized cells that carry electricity to your heart muscle to regulate contractions. These cells branch into two main bundles that lead to the right and left sides of your heart. When a bundle doesn't form normally or becomes damaged, the electrical impulses on that side are slowed. If the signal can't get through at all, the bundle is referred to as 'blocked.' The signal then finds an alternate route, which is often slower. Bundle-branch block by itself rarely causes any symptoms and can only be detected on an electrocardiogram. An underlying problem can trigger the condition, such as heart muscle weakness (cardiomyopathy). A pacemaker may be implanted if the bundle-branch block causes your heart rhythm to become too slow. But if your heart rate isn't seriously affected, then a pacemaker may not be necessary. " In other words, no - LBBB should not come and go
  6. Cardiac ultrasound is the same as echo
  7. Your echo results spell out that you have CHF and may need valve repair to improve your symptoms
  8. EPS is an effective procedure if other factors do not make it risky and and if it is done by a doctor who is truly expert, highly experienced, and who views you as a real person, not a chart. Verify all these things. If you cannot, get a second and third opinion before having one
  9. Get yourself considered (through your new and competent doctor) for VRT therapy trials - pronto. You may be the sort of patient they want. It is worth a shot, especially since a trial would supply you the device for free
  10. Families are for support of one another - unconditionally. If your kids or husband were sick, would you think like this? Then why do you think they think this way about you? They want you better, regardless. So do we. Chin up, pray always - there is hope. We'll remind of that fact daily if necessary. Others have done the same for us. How can we do less?

Well, welcome to Jon's Place. Get another doc today is my advice. Download the full prescribing info for amiodarone here. Don't be a stranger! Jon.


Tom B, October 30, 2000 - Hi, I want to share with you a positive but delayed improvement after I had a pacemaker installed to re-synchronize my heart, following standard drug treatment for CHF. I had a 3 lead pacemaker implanted May 5th, 2000. I was expecting some reasonably quick and noticeable improvement but none came. By July 5, I had another echo done and there had been virtually no improvement, so I was referred to a heart transplant clinic. I saw them on August 9, about 90 days after the pacer implant. In the standard course of evaluation they did another echo. Bingo! They found appreciable improvment, an EF that had gone from 19 to 40% and they said there was no way I was getting listed for a donor heart.
     Fine by me! But the main point I want to make is the 90 day wait for results. It surprised almost everyone concerned but there it was. So if you have a pacemaker installed to re-synch your heart, there is at least my experience that the payoff can come sometime later. I hope you see success in any time frame, though! tbehan@home.com


Davida S' October 30 reply to Bill's October 30, 2000 - Hi Bill, You are an inspiration to patients as well as caregivers. I pray God continues to bless and guide you every day. Though everyone is different, you provide hope. My husband's first doctor says 6 months usually tells the outcome so after 6 months, Dave's EF was at 35-40% compared to the original 10%. I got a little discouraged but I see Dan's endurance and spirits building every day. To know 2 years later you have moved into normal ranges is awesome. You deserve a "high five." cavalier_1@msn.com


Mary, October 30, 2000 - Hey ya'll, It's been awhile since I posted but I have been here every day except Sunday. I am still dragging along since the new cardiologist took me off all meds. My energy has improved and my memory has almost all returned. The ticker still flutters and thumps hard, but I have resigned to the fact that this is just my life from now on. Surgery is in the near future to repair the reflux flap thingy. Severe reflux problems have caused my throat to swell again and this added pressure isn't helping the flutters and thumps much. My insomnia is worse now since the meds are out of my system. Since I can't receive SSD, I have started cleaning homes in the mornings while my son is in school. This is hard work but it pays bills and puts groceries on the table. This is the only job I can do that will let me be flexible for doctors' appointments and school functions. Since SSD isn't there for me after I worked hard in a factory most of my young adult life, I figure cleaning houses is my tax-free way of earning a living and helping my husband with a few bills. Christmas is near and my 5 year old just would not understand why Santa didn't leave a few things.
     Does anyone know if the thumps and the flutters ever get better or go away? If I am on the lower range of a normal heart, shouldn't most of this be gone? Maybe one day one of us will find a doctor with a few good answers for us, Mary. dwighth@tnweb.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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