Jon 5-18 sorry, request for help
Jon 5-18 Wow!
Jon 5-19 update & here we go!
Whitey 5-19 Aldactone & CHF meds questions
Ben 5-19 intro, CoQ10 questions
Jon's 5-19 reply to Ben's 5-19 CoQ10 info
Jon 5-19 to Barbara F
Cheryl T 5-19 Jon, how'd your tests go?
Jon's 5-19 reply to Cheryl T's 5-19 it's been a long week! <g>
Leland Y 5-19 e-mail change, update & more
Kathy 5-19 seek weight gain advice after getting defibrillator/pacer
Caroline 5-19 intro, questions about lightheadedness, nausea & more
Hope 5-19 coping with meds & more
Bev T's 5-19 reply to Jack's 5-13 thanks for the CoQ10 info & more
Sherlene 5-19 got my SSD - finally!
Jack's 5-19 reply to Ben's 5-19 CoQ10 info
Jon 5-20 plumb wore out, guys
Barbara F 5-21 angina, nitro patch problems, questions
Bill M 5-21 complaining to Comp USA
Jon's 5-21 reply to Bill M's 5-21 thanks & more
Sherlene 5-21 now off Vasotec, worried, & more
Jon's 5-21 reply to Sherlene's 5-21 ACE inhibitors, possibilities
Jill M 5-21 I'm back
Jon's 5-21 reply to Jill M's 5-21 a lot of us missed you
Bill D's 5-21 reply to Caroline's 5-19 heart funkiness, meds & more
Pam E 5-21 having cath Monday
Jeanette's 5-21 reply to Caroline's 5-19 fatigue & nausea
Jenni K's 5-21 reply to Bev T's 5-19 your message struck a chord & more
Sandi M 5-21 not doing well at all, prayer request
Ben B's 5-22 reply to Sandi M's 5-21 EF measurements, trends, & more
Jon's 5-22 reply to Ben B's 5-22 more info on how echos are read
Pam P 5-22 has anyone had a cath through the wrist? & more
Rick M's 5-22 reply to Bill D's 5-21 Bill, it really is worth another thought or two
Barbara S' 5-22 reply to Sandi's 5-21 I share your anxiety about transplant
Robin Lynn's 5-22 reply to Barbara's 5-21 nitro replacement possibility
Rieale 5-22 is anyone in a clinical trial?
Peggy's 5-22 reply to Jill M's 5-21 it is good to hear from you!
Harry W B 5-22 is anyone else in the etanercept trial?
Tom S 5-22 Comp USA should be ashamed
Lynn M's 5-22 reply to Caroline's 5-19 sounds like a similar experience
Lynn M 5-22 does anyone else get chills on bad days?
Linda O's 5-22 reply to Lynn M's 5-22 chills
Tom W's 5-22 reply to Pam P's 5-22 cath through the arm or wrist artery
Walter K 5-22 intro, questions & more
Walter K's 5-22 reply to Lynn M's 5-22 chills
Rieale's 5-22 reply to Lynn M's 5-22 chills
Harry's 5-22 reply to Lynn M's 5-22 chills
Pat L 5-22 update from Albany
Robin Lynn 5-22 chills, echos & more
Jon's 5-22 reply to Robin Lynn's 5-22 I think I passed
Donna's 5-22 reply to Lynn M's 5-22 chills & more
Barbara P J's 5-23 reply to Bill D's 5-21 pacemaker can really make a difference
Bill D's 5-23 reply to Robin Lynn's 5-22 what caused my "spells"
Sandi M's 5-23 reply to Ben B's 5-22 tests, transplants, chills & more
Mary Lou L's 5-23 reply to Lynn M's 5-22 chills & more
Linda Grant 5-23 chills, this site & more
Jon's 5-23 reply to Linda Grant's 5-23 chills & Comp USA pooters
Tom S 5-23 chill, headaches & cough
Sherlene's 5-23 reply to Jon's 5-21 more info on meds, worried
Jon's 5-23 reply to Sherlene's 5-23 Aldactone, digoxin, inotropes
Jon 5-23 arcade-style game & request for info
Robin Lynn's 5-23 reply to Bill D's 5-23 heart rates, pacers, beta-blockers & more
Krista 5-23 meds & atrial flutter questions
Rieale's 5-24 reply to Barbara's 5-23 pacemaker questions, seek those who have been in trials
Jon's 5-24 reply to Rieale's 5-24 pacemakers
Karen K 5-24 CoQ10 info, still around & more
Judy M's 5-24 reply to Whitey's 5-19 spironolactone (Aldactone)
Ginger 5-24 new chat room tips, chills
Sharon J W 5-24 chills & arrhythmia
Joe S' 5-24 reply to Jon's 5-22 chills
Jana B's 5-24 reply to Robin Lynn's 5-23 chills, arrhythmia & coughing?
Jon's 5-24 reply to Jana B's 5-24 I only get chills on bad days
Lynn M 5-24 chills, complications & more
Lynn M's 5-24 reply to Pam P's radial artery (wrist) cath
Jon's 5-24 reply to Lynn M's 5-24 radial artery (wrist) cath
Lynn M's 5-24 reply to Rieale's 5-22 I'm not in a pacing study, but,...
Jon 5-24 don't forget the loved ones!
Sharon J W 5-24 brachial vein experience (not radial artery)
Bill D's 5-24 reply to Krista's 5-23 hypertrophic cardiomyopathy, med side effects
Jack 5-24 chills could mean fever
Jon 5-25 pooter update - good news, kind of
Bev T 5-25 update, Cozaar questions
Robin Lynn's 5-25 reply to Jon's 5-24 thanks for the explanation
Jon's 5-25 reply to Robin Lynn's 5-25 the heart's amazingingly resilient
Ruthie A 5-25 update, need help with Rx meds $$$ info
Jon's 5-25 reply to Ruthie A's 5-25 Rx meds $$$ info
Milt's 5-26 reply to Bev T's 5-25 Cozaar experience
Gus R's 5-26 reply to Ruthie A's 5-25 financial help for Rx meds
Lynn M's 5-26 reply to Ruthie A's 5-25 financial help for Rx meds
Rodd M 5-26 intro
Phyllis A 5-26 have a good holiday
Marlon F's 5-26 reply to Jana B's 5-24 why coughing helps your arrhythmia
Marlon F 5-26 intro
Jack's 5-26 reply to Jon's 5-25 about that motherboard,...
Brenda C 5-26 questions for women out there, & chills
Jana B's 5-26 reply to Bev T's 5-25 Cozaar experience
Al H's 5-26 reply to Peggy's 5-22 to everyone, for Peggy
Marlon F 5-26 about the heart's pacemakers
Sandi M 5-27 cath questions, thanks & more
Jon's 5-27 reply to Sandi M's 5-27 Swan-Ganz cath, transplant info & more
Trish 5-27 great to hear from others who understand
Robin Lynn's 5-27 reply to Marlon F's 5-26 worried about my heart beats
Al M 5-27 Cris Clarke died
Jon 5-27 I heard from Robin W
Lori P 5-28 blood thinners
Sally's 5-28 reply to Bev's 5-25 Cozaar, meds, attitude & more
Sox Nelson 5-28 e-mail address change
Beverly 5-28 bad cath experience
Jon's 5-28 reply to Bev's 5-28 mine was cool
John Klose 5-28 bosentan trial info (endothelin antagonist)
Barbara F 5-28 seek advice on migraines
Jon's 5-28 reply to Barbara F's 5-28 my migraine experience
Jill S' 5-29 reply to Marlon F's 5-25 can you explain LBBB?
Wanda G's 5-29 reply to Jon's 5-28 unexplained headaches
Robin Lynn 5-29 headaches
Sherrell G's 5-29 reply to Jon's 5-28 headaches & other pains
Barbara P J's 5-29 reply to Barbara F's 5-28 headaches & hormones
Ginger 5-29 migraine headaches
Lynn M's 5-29 reply to Barbara F's 5-28 migraine headaches
Rieale's 5-29 reply to Jon's 5-28 migraine headaches & CHF
Lynn M's 5-30 reply to Beverly's 5-28 caths, pulling the sheath
Rick M 5-30 America's veterans - do not forget!
Lamar Mangham 5-30 intro, good to find you
Jill S' 5-30 reply to Jon Klose's 5-28 questions about that study
Bill D 5-30 found those great dirty potato chips!
Roger H 5-30 allergy season, headaches & more
Linda G 5-30 migraine headaches
Lynn M 5-30 migraines & heart meds
Lynn M's 5-30 reply to Rieale's 5-29 migraines & heart disease
John Len 5-30 unexplained headaches & more
Bill M's 5-30 reply to Lynn M's 5-29 auras
Tom S 5-30 blood sugar & headaches
Eva M 5-30 has anyone taken Xenical?
Jean C 5-31 humidity tolerance question & more
Jon 5-31 seek support group info & more
Jon, May 18, 2000 - Hi everyone, I apologise for the unexplained absence. The sob story goes like this :-) Let's see, first a Microsoft security patch wiped out my Windows 95, then my glasses broke, my only chef's knife broke, my wife's car had to go in the shop, my dog got very sick and had to go to the vets for tests, our garbage disposal broke, tonight I had to attend a dinner for scholarship possibilities for my daughter and tomorrow I have my rescheduled vo2max test! Whew! Honestly, I don't feel too good due to stress and overdoing to get all this stuff straightened out.
Now for the clincher, my modem in the new pooter is broken and Comp USA PC won't fix it even though I bought a 3-year warranty - parts and labor - with on-site repair! I have written a local tv news station and could use your help as well. Anyone who would like to help can call Comp USA PC and raise the roof about their shabby treatment of disabled people! The only phone numbers I have for them right now are tech support and sales. Sales can be reached at 1-800-700-5898, according to their tech support people. You can also go to their web site at www.compusapc.com and try to find an address to e-mail them or a form to send feedback - the longer the message, the better. The more they get bugged, the faster this this will probably get fixed and I'm so tired from getting everything else fixed, I just don't have the energy to really tear into them.
As if this wasn't bad enough, one of their tech support persons told me that by reinstalling Windows, I voided my warranty (not true) even though I was following their tech support people's instructions is doing so! Also, the last tech support guy actually screwed up more of my system (the PCI to PCI bridge, which is crucial), and never made a dent in the original problem!
I'm stressed out, very tired, and am not up to running floppies up and down stairs to do this site so until I can get this system fixed, I am afraid updates will be very spotty and I will not be answering any e-mail at all. I am really sorry but I'm just too tired and still have to face a vo2max test tomorrow. I got this here by doing the html file on my "new" system, putting it on a floppy, taking it upstairs and setting up an FTP program to upload it. Jon.
Jon, May 18, 2000 - Hi everyone, I don't know how many people called Comp USA but I got everything squared away in one 15 minute phone call today (as compared to 3 previous phone calls totaling 3 hours which got me nowhere) so it must have been something else! Thanks. I have to upgrade my browser to get my e-mail running, which means a 4-hour download. When I get that done, I'll download my e-mail and get to work. Things should be in the process of catch-up tomorrow evening. Thanks again! Jon.
Jon, May 19, 2000 - Hi everyone, First, thank you all for laying into Comp USA. They knew who Jon was, trust me. The person who fields the messages may not, but it filtered upward. <g> If you e-mailed them and get a reply (and if this is all right with you), please do not answer it but forward it to me and I will send them the formal letter I have written discussing how disabled people on the Web need the service they pay for when purchasing technology to allow them to communicate with vital health resources and likewise disabled friends. It includes a great deal of information and details all my experiences with their tech support, including times, names and notes I took during the calls and is quite convincing, I assure you.
I am still configuring some stuff but having a CD writer truly eased this format into what would have been a breeze without the Comp USA problem. I will be behind on my e-mail for awhile but will be chipping away at it steadily. I lost all my page update notices (big deal) and a few articles ready for the mailing list. The only recent updates I can recall (although the list was long) are an update to the CoQ10 page, some new bios and lots of bio updates and a wallpaper that you should avoid if you like president Clinton's administration. ;-) I'll try to update the forum pages in lots of little uploads for a day or two so new posts are going up steadily. I'll skip any general posts, like Mothers' Day wishes, to avoid having a zillion posts go up on one date. Now, I'll get to posting posts! Jon.
Whitey, May 19, 2000 - Hi, I am a 62 year old man and an insulin dependent diabetic. I have recently been diagnosed with CHF and my doctor put me on spironolactone. Does anyone know anything about this? What other medications should my doctor and I consider? email@example.com
Ben, May 19, 2000 - Hi all, I just discovered this board and am interested in all the positive reports of CoQ10 use. I am male, age 50, had a bypass 4 years ago, and at that time my EF was 10. No one expected me to survive but apparently collateral circulation was well-developed. The doctors were surprised I had even been able to get out of bed, let alone hold a full-time job and do yard work. A classic case, they said, of "silent ischemia." Detection of the condition occurred only after anomalies in an EKG during a run-of-the mill physical. I had had 2 heart attacks without even knowing it.
Now after 4 years of rehab, a low fat diet and pretty minimal meds (Lanoxin, Coumadin and vitmain E) my last test showed my EF to be 27%. Having read a bit here and there about coq10, I asked my cardiologist about it, thinking of course that he would take a very conservative stance on it but I was wrong. He has never heard of it, which surprised me, and I'm curious. Is this stuff really that much on the fringe of conventional medicine? Regardless, I've decided to give it a try. I ordered capsules since I want maximum absorption. I tried chewing the caps along with fatty food (peanut butter). It had a terrible, bitter flavor so forget the chewing routine. Does anyone have a suggestion on dealing with the flavor of caps or is this unique to the vendor? Thanks for your patience in reading this. Ben. firstname.lastname@example.org
Jon's May 19 reply to Ben's May 19, 2000 - Hi Ben ?, How effective CoQ10 is depends on who you ask. <g> However, it's not on the edge of treament theory, as can be seen by the impressive number of studies done about it. You can find some at my CoQ10 page and there are scads of them at Medline - the same place your doctor gets his medical information. I would suggest looking for a liquid or sublingual form if you can afford it. They are pleasantly flavored and get excellent absorption. The sublingual sprays are often called "liposomal." My site's sponsor makes a liquid CHF supplement with CoQ10 in it, but I don't advertise for them anywhere on my site, so if you're interested in that, you'll have to e-mail me. Jon.
Jon, May 19, 2000 - To Barbara F, Please send me an e-mail address so I can post your message! Thanks, Jon.
Cheryl T, May 19, 2000 - Hi Jon, How did your recent tests go? I hope you got improved results. Cheryl1cng@aol.com
Jon's May 19 reply to Cheryl T's May 19, 2000 - Hi Cheryl, The first try was a bust. I got there and their vo2 equipment promptly broke, so I went back yesterday and took it. The tech didn't want to put me on the treadmill because I hit the floor taking the breathing tests. <lol> I told her that was normal for me and that the treadmill part would go well. She didn't believe me but let me on it anyway (barefoot, as always) and it went well. I don't have results yet but will let you know when I get them. Unfortunately, with the stress of the week's events around here, I forgot my camera so I didn't get any pictures of the test! That made me madder than having to go back twice to take the test itself! Jon.
Leland Y, May 19, 2000 - Hi Jon, We had to revert back to our old e-mail address: LLYEE@surfside.net. TimeWarner cable just did not work well. We have had it 4 months now and it's down at least every other day; an hour here, an hour there. In TW's fight with Disney, TW is really getting it on the chin. Hopefully, Aol-TW does not go through - what a monster creation.
I mentioned about 2-3 weeks ago about the wonderful treatment at Kaiser and that I "graduated" from their CHF plan. Just Friday, while we were out, I got another call from Kaiser CHF clinic. It was in reference that I will now be at their next level in CHF treatment. It has me excited. I can't wait for their treatment plan. Last week's news about the Jarvik 2000 was even better. Now we don't have to worry about waiting in a hospital for months on end for a donor heart. Supposedly this Jarvik-2000 will extend our hearts until a donor shows up. So everything has to be good from here on out with no more worries. Hopefully, this news will help those who are in despair. Don't give up. Research is always finding new cures. I just know that He is always watching us, even though we don't realize it. Luv and salutations, Leland. LLYEE@surfside.net
Kathy, May 19, 2000 - Hi everyone, I have a question about how much weight should be gained when you have an implanted defibrillator with a pacemaker. I had one implanted and my weight rose by 4 lbs even eating hospital food overnight. I could not take Lasix for 2 days prior to the surgery but then went back on 200mg Lasix in the morning and 160mg in the evening. I have limited my sodium, and cut my caloric intake to 1500 calories per day. I am only 5 feet tall so 4 lbs is a lot. I appreciate any help that ya'll can give me. Thanks, Kathy. email@example.com
Caroline, May 19, 2000 - Hi, I was first diagnosed with CHF caused by cardiomyopathy 10 years ago, with an EF of 20%. For a long time I have been on Lasix, Lanoxin, Prinivil, and Coreg with no problems. A month ago without any warning I had severe shortness of breath and barely made it to the hospital in time. With treatment, my lungs cleared out pretty fast and I have been following a very strict low-sodium diet. I'm feeling better but the improvement has been very slow and I'm nowhere near feeling as good as I did before this recent episode. I have 2 questions:
How long does it generally take to recover from an episode like this? I'm experiencing a lot of nausea and lightheadedness with headache. It seems to be worse the more tired I am. I know lightheadedness is a CHF symptom but is the nausea and headache a symptom people get too? firstname.lastname@example.org
Hope, May 19, 2000 - Let's see, I'm losing my train of thought already just from all the activity around me here at home! Sometimes I wonder if my forgetfulness is CHF, drugs, or kids! Anyway, as far as the second line of ACE inhibitors goes, I tried two of them and one made me feel like I had the flu all the time, and the other one prevented me from sleeping. ACE inhibitors themselves, of which I tried 3, made me have aching muscles and that tiresome cough so I take metoprolol and with only 50mg per day, my BP is quite low and my heart beat pretty regular. I started taking 40mg Lasix and 25mg Aldactone (those 2 replacing dyazide) and so far have just noticed that within the first 4-5 hours I lose fluid but by the end of the day it seems to be back up. I haven't noticed any side effects. This is such a strange time because I feel like I should be making funeral arrangements but I really don't feel so bad. The low numbers - that have just continued to go downward over the past 5 years - are scary. Hope email@example.com
Bev T's May 19 reply to Jack's May 13, 2000 - Hi Jack, Thanks sooo much for the CoQ10 web site info. I'm going to Shands on Monday for a repeat of the transplant tests and this is great to take to the coordinator (Tim, are you there?). He gives me a hard time about taking it. Jon, I'm armed with your info also. Thanks to all of you. I haven't posted in awhile but my Vo2max was up from 15.2 to 16.1% (should be 27) so at least I'm not losing ground. Bev. Mtnmama008@aol.com
Sherlene, May 13, 2000 - Hi Everyone, I just wanted to let everyone know that my SSD was approved on Monday the 15th. It took 2 long years and a hearing before a judge but it finally happened. So if anyone out there is waiting, just be patient. Although we almost lost everything because I was unable to work. The system really stinks! My prayers to all, Sherlene. SFord02@aol.com
Jack's May 13 reply to Ben's May 13, 2000 - Hey Ben, A little info on why many doctors have no working knowledge of CoQ10 and other supplements. Doctors are inundated with information about new drugs by pharmaceutical salesmen. That's how they get a lot of their "education" about the drugs on the market: From advertising brochures and salespeople with shiny spots in the seat of their pants. CoQ10 and other supplements require an active process of learning by the doctor because there are no salesmen to "push" the product but there are plenty of doctors who research it constantly. About the taste, well, since all the powder is the same, it all tastes nasty. It works better if you empty the capsule and mix the powder with the peanut butter. firstname.lastname@example.org
Jon, May 20, 2000 - Well guys, I'm pooped. I'll try to get back to it tomorrow but I'm just plain worn out today. Jon.
Barbara F, May 21, 2000 - Hi, My doctor has prescribed the lowest dosage of nitro patch for me to wear but lately about every 2 or 3 weeks I have been getting migraines, which last a day or two. During this time I cannot take my prescribed meds and I know that is not good. I went to see my heart doctor and he suggested I go off of the nitro patch but I get angina in the evenings towards the end of the day when I do so. What to do? Has anyone else had something like this and what did you do? Taking so much medication is difficult when you are nauseous from a migraine, let alone the pain from the headache. Nitro has always done this to me. That is why I received the lowest dose. There must be some solution for this problem. I hope to hear from someone. Thanks, Barbara. email@example.com
Bill M, May 21, 2000 - Hi Jon, Here's an e-mail address for Comp USA PC: In the field that asks for serial number just put in 15 numbers then let them have a piece of your mind - www.compusapc.com/support/feedback.asp. I am the founder of 2 clubs with 1000+ members and I will also ask them to send a response to chumpuserve. Bill. firstname.lastname@example.org
Jon's May 21 reply to Bill M's May 21, 2000 - Hi Bill, Thanks! :-) E-mail to Comp USA PC can also be sent to:
You can also send comments on the shabby way Comp USA PC treats disabled but paying customers who rely on the web for health information, support and companionship to:
Sherlene, May 21, 2000 - Hi, My cardiologist recently increased my Lasix to 160mg per day and took me off my Vasotec. My blood pressure was extremely low and I could barely function. I'm worried about not taking the Vasotec though. Everything I read says I need an ACE drug. Even with 160mg of Lasix, I still swell so badly around my middle toward the end of the day, it's hard to breathe or even bend over. Is it common to take someone with CHF off an ACE drug? God bless, Sherlene. SFORD02@aol.com
Jon's May 21 reply to Sherlene's May 21, 2000 - Hi Sherlene, It's not common but it happens. Usually, a CHF specialist will try a patient like you who is having trouble tolerating an ACE inhibitor on an ARB (ACE Receptor Blocker or ACE 2 drug) because they achieve nearly the same effect with fewer side effects. Also, have you considered Aldactone (spironolactone)? It has suppressive effects on the same hormones that ACE inhibitors "inhibit." Are you on a beta-blocker? Jon.
Jill M, May 21, 2000 - Hi Jon and all, This is from a very old CHFer. I haven't replied or written to anyone for many months, and fully expected my bio to have been taken down by now, but I see it's still there so I feel compelled to write once more. It's been 7 months since John (my husband) died and I've been through the whole gamut of emotions. I seem to be emerging from my self-protective security blanket and am now, I think, ready to face the world again. I apologize for not replying to e-mails but it became emotionally impossible for me to do so.
I live in South Africa but have two sons and their wives in California, where I spent December and January. Some of you may remember the original Donna P. She is one day younger then I am and has been an invaluable source of strength for me. I spent a wonderful week in southern California with her and her husband and we were like sisters.
Healthwise, I'm stable. I have been a lurker on your site and it seems that older folk like me (61 at the last count) don't seem to experience dramatic increases in EF and other numbers, but I haven't had any problems requiring medical intervention, except for caratact surgery which was very successful and unproblematic.
Jon, I promise to update my bio and will even send a photo since I now have a scanner. I really don't like receiving inspirational messages and jokes on my e-mail, but am more than happy to respond to real messages. I have been through the mill and emerged a whole person, far stronger than before all my grief. Best wishes, Jill M. email@example.com
Jon's May 21 reply to Jill M's May 21, 2000 - Howdy-doo Jill, It's great to hear from you! Take your time on the bio update - I'm behind as usual, anyway. <g> For those who don't know Jill, she has been a mainstay on this site for longer than she wants me to say, I'm sure. ;-) Don't be a stranger, Jon.
Bill D's May 21 reply to Caroline's May 19, 2000 - Hi Caroline, I don't know if it has anything to do with you but I had to get off Coreg after taking the stuff for about 5 years. I began to have what I called "spells." I would start to get dizzy and nauseous and liked to pass out. They found my heart was going too slow and would skip 9 to 12 beats in a row. At first the cardiologist was all smiles. He said I needed a pacemaker. He would be the guy who would install the thing. I didn't want one. Why screw up a pleasant "sudden death" if you don't have to? So the now grumpy cardiologist said, "Well then, you'll have get off Coreg and see what happens." So I did and what happened was my heart now skips one beat once in awhile. I never did get headaches though. Bill D. firstname.lastname@example.org
Pam E, May 21, 2000 - Hi All, For those who know me and others who don't, I am going for a heart cath on Monday morning, so please think of me Sunday night American time please, and hope I will see you again next week. Pam E. email@example.com
Jeanette's May 21 reply to Caroline's May 19, 2000 - Hi Caroline, I have the same symptoms you have, including nausea and being tired. It goes hand in hand with the meds you take and cardiomyopathy. I have DCM and am taking 40mg Lasix, 6.25mg Coreg twice a day and 20mg Lisinopril at night. I have been lightheaded since they put me on them 2 years ago. The nausea comes and goes. For the tiredness, that's the disease itself. We all are tired most of the time; especially after an episode of CHF. Your body is just trying to regain some of the strength you lost and it is telling you to sleep. It is easy to read the signs if you are listening and want to feel better. It doesn't make you any less of a person if you feel like taking a nap. It just means you need to rest. I always take a nap during the day. My body just doesn't seem to function without one. My EF is only 20-25% and has been that way since the beginning and won't get better unless God pulls a miracle for me. You get used to the side effects and the nausea diminishes after a while. Hang in there, you're not alone. If you ever want to talk, just e-mail me, I would be happy to talk with ya. Good luck and God bless. I'm praying for ya! Jeanette. firstname.lastname@example.org
Jenni K's May 21 reply to Bev T's May 19, 2000 - Hi Bev, It just struck a chord with me as I am having my 6-month transplant checkup this coming week. I can't wait to see if CoQ10 has made a difference. My coordinator hadn't heard of it but my cardio nurse at my local hospital put me onto it (also Tim). Over here in the UK, they don't tell you any measurements. I even had to beg to get my EF info. I will start to ask about Vo2max numbers etc. It will drive them mad, but who cares?! I hope your tests go well, Jenni. email@example.com
Sandi M, May 21, 2000 - Hi everyone, Jon, I sure hope you are not overdoing it! Well I went to Shands' last week and my EF is down from 22 to 15. Last July my vo2max was 14% and I was told to come back in 5 weeks for another Vo2max test. If it is 14 or below, I will be put on the heart transplant list. He said my output is much worse now. This sure is a lot to think about. I am so scared that I can't sleep. I kept blaming my weakness and chest pains on that last bout with the flu and thought it would go away. I guess not. Please pray for me that my I get a good reading on June 20th. I just don't know if I am ready for transplant yet. I thought I would have at least another year or two to go. Sandi. firstname.lastname@example.org
Ben B's May 22 reply to Sandi M's May 21, 2000 - Hi Sandi, Were these EF measurements by echo, muga or cath? If by echo, there really isn't much difference between 15 and 22. I don't know how doctors read those things anyway. I think it is sort of like telling a person's temperature by feeling their forehead. I'd rather get a real reading that measures changes in radioactivity or pressure. Even if it is accurate, it isn't that terrible a drop. I don't think your situation could be that drastic or the doctor wouldn't have told you to wait 5 weeks before you come back. Isn't that just like a doctor?! Freak you out with information and then tell you to wait 5 weeks; Unbelievable! Anyway, if you get on the transplant list, you can always come off it if you improve. It isn't like you get on the list and have a new heart the next week. Ask anybody who is waiting for a heart. I hope your test comes out good anyway. email@example.com
Jon's May 22 reply to Ben B's May 22, 2000 - Hi Ben, While I haven't done the final rewrite to simplify it further (this one has been a booger!), I did put up a new article about the need for standardizing the way doctors use echos. Even if you just read what is in bold, it might give you new info on how echos are read. See this page. Jon.
Pam P, May 22, 2000 - Hi and Smiles to all, Has anyone had a cath through the artery in their wrist? Or has anyone had the new Fast CT Scan? I'm scheduled for the CT Scan next week to find if there's any calcification in my arteries. I thought it would take the place of a heart cath but it won't. The doc said if my score is anything above zero, I still have to have a cath and he wants to do it in my wrist. I'm scared to death to have a cath; I've never had one and I'm afraid of having a stroke.
Jon, I read the article you have on this site and it was very informative. I'm just wondering if anyone else has had this wrist cath and what they thought about it. My doc has only done 30 of them and that sounds like a small number to me. Also, it costs $450 and insurance won't pay a penny because it's so new. Thanks so much for your site Jon. I don't post often but I'm always reading the comments. God bless! Pam. PammyPanda33@aol.com
Rick M's May 22 reply to Bill D's May 21, 2000 - Hey Bill, You're doing it again. Next to my wife and family, my pacemaker is my best friend. It never rests, it never gets lazy, it never strikes for higher pay, it never pouts or gets its feelings hurt. It just keeps rollin' along while keeping me on an even keel. I encourage you to give it more thought and maybe seek a second opinion. I couldn't live without mine, in more ways than one. firstname.lastname@example.org
Barbara S' May 22 reply to Sandi's May 21, 2000 - Hi Sandi, A transplant nurse up at Shands wanted me to test for a transplant. I ran scared, because my daughter was still in high school about to graduate. I certainly can understand why you may not feel ready. I am sort of still like that. Fear is a powerful emotion. I will definitely want a transplant but I have a lot of fear too. I just thought that you would like to hear from a fellow person with similiar emotions. I keep hoping that something will come along to help us with the least impact but a person has to face the truth of when it is time. I admire your admitting to the fear. Good luck with your test. I will be thinking of you. Chnabby@aol.com
Robin Lynn's May 22 reply to Barbara's May 21, 2000 - Hi Barbara, My new internal medicine doc gave me a medicine called Procardia to replace my nitro pills. They last longer - 6 hours to control angina - and she mentioned to me that there is a 24 hour dose available. I have only taken it once and was really suprised that I didn't have a headache! The nitro always made me feel worse than the chest pain so I had learned to live with the mild pains I have, which happen almost every day. You might want to ask your doctor about Procardia (the 24 hourr dose) and see if it helps you with less side effects. God bless and good luck.
PS. Stacy, I can't wait till you get your chat going again. I miss you. :-) email@example.com
Rieale, May 22, 2000 - Hi, Can anyone can give me a personal view of clinical trials? I'm considering trying the bi-ventricular pacing or pacemaker trial, but I'm scared. The idea of implanting something within my 22 year old chest frightens me. I know there are no easy answers and it must be my choice, but who else here is participating in a trial? Rieale@aol.com
Peggy's May 22 reply to Jill M's May 21, 2000 - Hi Jill, I am so glad to hear that you are doing well. I have worried and prayed for you. You were there for me when I needed someone and I just wanted to do the same for you. By the way, please don't say 61 is older; I hope to be considered relatively young at that age, and I remember the photos from your son's wedding. You looked great for a middle-aged gal. Peg. Prussell@nmhs.net
Harry W B, May 22, 2000 - Hi, I have had CHF for 25 years and I have had excellent treatment to keep it under control as much as possible. I am 83 and still active, but with low energy. My EF is now down to 12%. Three months ago I started on a program to blind test a new heart drug called etanercept. There are 800+ people in the USA and Canada in this program and I would like to get in contact with other members who are also on this program. firstname.lastname@example.org
Tom S, May 22, 2000 - Hi all, Jon, I did copy the whole story and added a few choice words to CompUSA about their shabby service to you. I was particularly annoyed by the fact that they told you reloading any Windows product would void their warranty. That's like saying pumping your own gas into your car voids the manufacturer's warranty; anything to make extra bucks. email@example.com
Lynn M's May 22 reply to Caroline's May 19, 2000 - Hi Caroline, Wow! That sounds similar to the "adventure" I had last July where I just made it to the hospital in time and had to be put on the ventilator for 3 days. Isn't CHF fun?! ;-) Anyway, to respond to your question: It took me several weeks to get my strength back up after that episode. As for your headache, I'm not quite sure what's causing it. I've been having a mild one since I went into a drug study for an endothelin antagonist. But, it could be the ACE inhibitor that's causing it. As for how long it takes to recuperate, it's hard to say. After my pulmonary edema episode last July, I ended up in the hospital for unstable angina in September and again in October. My EF went from 39% in September down to 24% in March, with severe fatigue starting back in January. There was so much going on since July that it's truly hard to tell when I "recovered" if I ever did. Good luck! Lynn, the Princess of Rales. firstname.lastname@example.org
Lynn M, May 22, 2000 - Hi, Does anyone here get chills as part of their CHF symptoms? Friday, hubby came home from work saying that it was really hot outside. Having had so many chills and with my heart acting up so much that I had to lie down, I hadn't even noticed the heat, which probably made my heart act up so much. I've also had chills on other occasions on "bad" days. I haven't seen chills listed along with heart failure symptoms and have been wondering if it's the CHF or something else going on. Lynn, the Princess of Rales. email@example.com
Jon's note: I get chills on bad days. How many other people do?
Linda O's May 22 reply to Lynn M's May 22, 2000 - Hi Lynn, I had chills so hard that I couldn't stop shaking and ended up as an outpatient for dehydration. My veins were so flat the anesthetist had to put in my IV. When I thought about it, even as a teenager I had this type chills. Go figure! Linda O. firstname.lastname@example.org
Tom W's May 22 reply to Pam P's May 22, 2000 - Hi Pam, Many times the cath is done through an artery in the leg and you have to lay on your back for 8 hours. I do not lay still so my doctor went through the underside of my arm, above the elbow - a piece of cake. I had to hold my arm straight out for an hour. No one at the hospitial had ever seen it before. I think I will ask for the wrist the next time. Tom W. email@example.com
Walter K, May 22, 2000 - Hi all, First of all, my sincere congratulations and thanks to Jon for hosting such a wondeful site. This is my first post. I am age 70, had a pacemaker implanted about 7 years ago and had no problems with it except it was an emergency and I was on Coumadin because of arrhythmias. I swelled up with internal bleeding so much I needed the biggest bra made, and I am male! Anyway, because it was an emergency and a Friday afternoon, my internist had to grab any cardiologist he could find, who looked at my EKG in the hospital, acted like he wasn't sure I needed a pacemaker, then came in all smiles the next day because my heart had stopped for 4 1/2 seconds overnight and now insurance would cover the pacemaker cost. The next night before the surgery it stopped for 6 seconds, which must have made the doctor deleriously happy!
Anyway, from what I know now, the meds they put me on and a figure of 40 that was thrown at me after an echo but without much explanation, I think I was diagnosed then with CHF but no one told me and I didn't realize it at the time. I figured it out slowly and it was confirmed by the docs. Early this year, my EF was 35 and the same cardiologist put me on Coreg. At the point when I was up to 25mg per day, he cut my Prinivil in half and said he hoped to get me off it entirely. About 3 weeks later my blood pressure went from 140/90 to 170/101 and I had an overnight dramatic decrease in endurance. I thought one is supposed to stay on ACE inhibitors while taking Coreg and that Coreg is not supposed to replace them. Other things also happened to make me lose confidence in him so I switched cardiologists to a highly recommended local one.
Turns out we don't get along. This post is too long already to go into details of that, but one thing he has done is put me on Norvasc (my EF by a cardiolite stress test is now 27). About that time, I discovered this site. One of the articles Jon has on a different page of the site says that Norvasc (amlodipine) is of no value in CHF. The same cardiologist gave me a prognosis of a 50% chance of surviving one year. This sounds low to me from what I have read but guess I'll know (or not) in a year. I also learned from this site that there are such things as CHF specialists (I have learned a lot from you, thanks again Jon) and have an appointment in another month with one at the the University of Pennsylvania. I have 3 questions:
Walter K's May 22 reply to Lynn M's May 22, 2000 - Hi Lynn, I have had chills complete with shivering and wrinkling of the skin on my fingers. They are not frequent and I do not know whether they are related to my CHF. I cannot correlate them with "bad days." They just happen, and last about 20-30 minutes, then stop. firstname.lastname@example.org
Rieale's May 22 reply to Lynn M's May 22, 2000 - Hi Lynn, I get chills quite often, but my CHF specialist chalks it up to being on Coumadin. Rieale@aol.com
Harry's May 22 reply to Lynn M's May 22, 2000 - Hi Lynn, I have had CHF for 25 years and as my EF gets lower and the blood circulation is slower, I find that I am getting chills more and more. My EF is now down to 12%. The only solution I have found is to wear more clothes and turn up the heat thermostat. email@example.com
Pat L, May 22, 2000 - Hi Jon and everyone, Where I live in Albany, New York, Albany Regional Medical Center was approved a while back for heart transplants, and were actually up and running as of February of this year. They did the first transplant in mid-April and have done a total of 7 between mid-April and now, just over 5 weeks! Almost everyday there is an article in the newspaper about the program. Now that they have done 7, the doctors have lamented that there are now only 3 people on their waiting list and they hope to get more referrals to build up the waiting list. Interestingly, none of the recipients have been from the actual Albany area but from other parts of the state. The doctor who is doing the transplants is Dr Charles Canaver. Just an FYI item. Pat L. firstname.lastname@example.org
Robin Lynn, May 22, 2000 - Hello to all, I wanted you to know that I also get chills but usually when I am having one of my "attacks." I don't know what to call them nor do my docs but they (we) all now know that they are not panic attacks. In some of them my pulse rate drops into the 40s and it feels like my heart is just trying to stop beating. I can't stand up, my body goes weak, my head foggy, pale and clammy, my speech is impaired, I sob, and of course get the chills. I am now having episodes where I am just doing anything and I am suddenly weak and feel like I have just awakened; like I have passed out but didn't go down. Do any of you experience that? In the past week I have gone down twice, but didn't totally black out. Any suggestions would be appreciated.
On the echo thing, I watched my last echo. I saw many numbers. Each time he moved the thing he took a pic and a numerical reading. I saw numbers as low as 30 and as high as 61. He said the doc would take all the numbers, the measurements and calculate an "average" and that would be how he estimates my heart size and my EF. It doesn't really sound all that accurate to me but that is how they do it in simple terms. If anyone one knows of anything dofferent, let me know. Jon, I did read your info on echo results and found it very informative. Thanks for all the work you do for us. You are truly a gift that I hope to have around a long time. By the way, any results from your test yet? Love to all, and God be with you, Robin Lynn. email@example.com
Jon's May 22 reply to Robin Lynn's May 22, 2000 - Hiya Robin, Naw, I imagine it'll be at least another week before I get any news about that. I survived the test so I figure I passed. ;-) Jon.
Donna's May 22 reply to Lynn M's May 22, 2000 - Hi Lynn, The last time I had a problem was while taking 50mg of Coreg a day; I was cold all the time. I had a problem with my heart only beating 42 beats a minute and missing beats while I was away at a dog show on 4/12/00. Although it was cold outside I was dressed warmly with long johns, 2 sweaters and a winter coat but I could not get warm. I just shook. Right after that I saw my cardiologist, who stopped 25mg of the Coreg so I now only take 25mg of Coreg a day and was switched to 25mg Aldactone once a day. I am doing a lot better, with no more Lasix or K-dur. I only take Lasix if needed and so far I haven't needed it, so maybe you need to have your meds adjusted. Just a thought, Donna. firstname.lastname@example.org
Barbara P J's May 23 reply to Bill D's May 21, 2000 - Hi Bill, I just wanted to let you know I had a pacemaker implanted on 4/27. I was told one week prior that I might need one and was sent to a different cardiologist at St. Vincent's for a consult the following Wednesday. The results were that a pacemaker was implanted the next day and I'm here to tell you it made a huge difference for me. After dragging rear for months, even when my EF was improving and most times I could handle things on a short term basis, it sure is nice to once again have a quality of life. Like I told the docs: if I could have 20 days of good quality versus 1000 days of dragging rear, I'll take the 20 anytime.
Think again, cause this is one person who feels like they are their "old self" once again. Yes, I realize it did not fix the underlying lousy heart, but I'll take today over one month ago anytime. Keep the faith, Barbara P J. email@example.com
Bill D's May 23 reply to Robin Lynn's May 22, 2000 - Hi Robin Lynn, I used to call them "dizzy spells." For over two years my cardiologist was puzzled as I was. Finally he gave me a simple EKG recorder. When I had an attack, I'd push the button and it would record what was happening: Thirty seconds before the "event" and for one minute after. It records 2 events and you call a telephone number to phone them in. I kept it for a month. We immediately found out. When my heart slowed down to below 60, it would stop for about 9 seconds. No wonder I got dizzy and felt like I was passing out! There are two ways to help it. One is a pacemaker and the second is to quit taking any type of beta-blocker. I was on Coreg and weaned myself off it. That cured those attacks! By the way Robin, your email address had: "Permanent, fatal errors!" Bill D. firstname.lastname@example.org
Sandi M's May 23 reply to Ben B's May 22, 2000 - Hi Ben, The first test was an echo then he they did a cath. I know I can go off the list; My problem is that I haven't decided if I will go on it. I am not sure I want to take the risks involved. Lately my quality of life has not been good at all but there is no prooof that a heart transplant will take, and so on. I really think if I could just take Coreg, I would have a much better chance. I have such a bad reaction to it: Vomiting, vertigo, hives, rashes, burning eyes, you name it. I have seen so many people improve so much with it. Not to worry, my test will go great and I will have all the docs scratching their heads!
Yes Jon, I get chills on bad days too. I have to be the only person in South Florida wearing sweat suits in May. Thanks to everyone who has e-mailed me with love and prayers. You are all so kind, Sandi. email@example.com
Mary Lou L's May 23 reply to Lynn M's May 22, 2000 - Hi Lynn and Jon, I get chills too. My teeth chatter and I shake so much that I become tired and weak. I wear sweats most of the time just to feel a little warmer, summer or winter; Socks, too. As a matter of fact, I find that summer is worse because in the winter the heat is on. I haven't fallen yet, I've always managed to get to a chair quickly enough. Sometimes everything goes black. I don't pass out or faint but I don't like the feeling. Now that we are aware that it's not "just me," we can bombard our doctor's with the fact that it happens to quite a few of us. Something to look forward to for a change. <g> Bye for now, Mary Lou. MLBinks@aol.com
Linda Grant, May 23, 2000 - Hi Jon, I hope you are feeling better and that you get your computer problems straightened out. If I can help you in some way, let me know. Your site is a gift from God. God bless you every day with strength from Him. I feel much better after reading your site and trying to help others on it.
I get the chills every day (heart drugs probably contribute to this and CHF) so I put on my long johns and fleece shirt. I even put my electric blanket back on the bed. To everyone on this site, may you have a good healthy day and feel well. God bless everyone on this site. Sincerely, Linda Grant. firstname.lastname@example.org
Jon's May 23 reply to Linda Grant's May 23, 2000 - Howdy-doo Linda, Thanks for the kind words. I do need God's strength and if it weren't for His strength pouring into me, I'd never to be able to maintain this site! I think I'd better add chills to The Manual!
As for my pooter, although I have finally gotten some Comp USA supervisors and a department head to talk nicely with me, I still have major pooter problems that their tech support caused. So if anyone has the gumption, feel free to e-mail the story to anyone and everyone who might help influence Comp USA to actually get in gear and fix this thing - which is still under warranty! Online computer magazines are a good bet since they review Comp USA products. Don't forget that Comp USA is a major supplier to the US government, so feel free to rag Congresspeople and Senators too! Thanks, Jon.
Tom S, May 23, 2000 - Hi, There are some days my feet feel like they are soaking in ice water but feel warm to the touch, with no real explanation forthcoming from doctors or anyone else. I am on 50mg a day of Coreg plus 320mg of Lasix, 25mg Aldactone, and the usual massive does of K-Dur. I am also supposed to be on Cozaar but I couldn't stand the hacking cough associated with that drug which is the second of that type I have been on and had the same result. As far as headaches go, I had a low-grade headache for at least 2 years and could never figure out where it came from. Then I was diagnosed with Type II diabetes and prescribed a daily dose of Glucatrol. After taking that, my headaches disappeared and only return when my "sugar" is out of whack. email@example.com
Sherlene's May 23 reply to Jon's May 21, 2000 - Hi Jon, I am taking Aldactone, but am not on any type of beta-blocker. I was just worried that being taken off Vasotec would make my condition worse. Thanks, Sherlene. SFord02@aol.com
Jon's May 23 reply to Sherlene's May 23, 2000 - Hi Sherlene, The bottom line is that if you really cannot tolerate the ACE inhibitor, then you just can't take it. It does happen. It might help offset dropping the ACE inhibitor to increase the Aldactone dose, but I'd have to consult with some dox to be sure. Do you take Lanoxin (digoxin)? It may help you to feel better and might slightly increase the pumping action of your heart (contractility). Also, have you been tried on intermittent infusions of inotropes? Those infusions are now done outpatient at many CHF clinics. Jon.
Jon, May 23, 2000 - Hi everyone, I've never done this before but there is a breakout-style game I really like called Dx Ball, which is styled after the Amiga game Mega ball. I'm making it available for download, since the author says it's ok. The game is free and runs under Windows 9x wonderfully. It is a Direct-X game so you do need Windows. You can download it from my Prodigy server space (removed) here.
Also, I have discovered that at least one person cannot read the fractions listed in the recipes on Kitchen Corner. She is seeing them as question marks instead of fractions. I need to know if anyone else is having this problem. If so please, please let me know so I can go to another character scheme on the numbers. I don't want to but if it's a wide-spread problem, I certainly will. (I already did once <g>) Thanks, Jon.
Robin Lynn's May 23 reply to Bill D's May 23, 2000 - Hi all, Thanks Bill, and to all who responded about the chills. It seems we are experienceing heart rate drops? Bill, I also wore a king of hearts for about 2 months. Wouldn't you know it that I had an attack one week before it and 3 days after taking it off?! Sooooo, my doc says he didn't see anything on it. Well, I didn't have one while I was on it! I must admit that I did have an event or 2 toward the end of the 2-month period but I had taken it off for my shower and didn't put it back on so I missed them (stupid me!).
I am taking a beta-blocker but refuse to go off it. My heart beat is so irregular without it that I can't function. We tried cutting the dose in half but then I was in tachycardia again. I am facing the possibility that we may have to increase my dose because of the arrhythmias I am now having. I am on Tenormin, Lanoxin, Norvasc, aspirin, Xanax and Lasix; and Procardia as needed. So for now I just put my faith in the fact that the Lord wants me here to take care of the children until they can effectively do it without me.
My biggest fear is that my heart will just stop during one of these attacks and not kick back in again, but we all have our fears. My mother in law is an RN who has clocked my heart stopping on a number of occasions. I always call her to come over with me when I have those spells. I for one am almost ready for a pacemaker if it would help me live without the fear of dying. I only fear leaving my babies, not death itself. About my e-mail address, I don't know why it does that, but my sis tells me of it often. Thanks to all and may God be with you, Robin Lynn. firstname.lastname@example.org
Krista, May 23, 2000 - Hi, I am 25 years old and have hypertrophic cardiomyopathy. I was diagnosed with CHF last December. Since then I have been taking atenolol, Accupril, Lasix, and Coumadin (since clots have been forming). I went into atrial flutter shortly after being put on all these medications and was scheduled to have a catheter ablation to correct it about a month ago. I ended up going into the emergency room the night before due to a small heart attack, likely caused by a blood clot. It was probably a blessing in disguise since more damage could have been done if they had proceeded with the ablation with clots in my heart chambers.
My ejection fraction was 24% in December and I had started to feel better once I started on the medications. Since I've been in the atrial flutter, I've been feeling extremely tired to the point where my chest hurts just walking on level ground. Just last weekend, I got sick and vomited about 10 minutes after I had taken my medications. I did not take additional pills and felt much better the next day than I had in weeks. Do you know if these medications tend to actually make one more tired? I realize atenolol can, and my dosage has been reduced, but I'm not sure of the others. I am scheduled for an ablation this Friday the 26th, and am hoping that will help me to feel better, but was curious about the medications. If anyone has any other insights or suggestions with the information I have provided, that would be appreciated as well. email@example.com
Rieale's May 24 reply to Barbara's May 23, 2000 - Hi, Can you or someone else explain exactly how a pacemaker affects someone with CHF and cardiomyopathy? I've read medical info, but I don't understand exactly what it is supposed to do. I'm debating whether to get involved in a clinical trial (miracle) which would involve the implantation of a pacemaker. I'm still looking for people who are or have participated in clinical trials. firstname.lastname@example.org
Jon's May 24 reply to Rieale's May 24, 2000 - Hi Rieale, I have been in 3 clinical trials but they were all for drugs rather than devices, and all under the same CHF research manager at the same CHF clinic. About pacers, they control the heart's electrical activity. The heart has a natural, built-in pacemaker called the SA (sino-atrial node). As long as the heart is healthy, the SA controls electrical signals that tell the heart when to contract each chamber and when to relax each chamber so all 4 chambers work in a coordinated fashion, and all is well.
Sometimes the heart enlarges (sound familiar? <g>) and that stretches the distance between point and point B (and point C,...) so that electrical impulses no longer reach the same points in the heart at the same strength in the same amount of time as they should. This is not good. Other times, the electrical pathways get screwed up by scar tissue (heart attacks) or the natural signal generator itself goes funky (arrhythmia).
In some cases an ICD is used. ICDs correct funky heart rhythms by "re-setting" the heart's natural electrical system with a shock. Pacemakers control heart rhythm - all the time - so it never gets funky. In CHF, besides the stretching aspect of the weak heart, chemical changes can change the heart's electrical system. Soooo, you get un-synchronized, where the heart's chambers aren't contracting and relaxing with quite the right timing. They are almost firing at the right times but not quite. So, you don't pass out or seize up or anything, but you feel like dog doodie under a hot sun!
This is estimated to occur in about one of 4 CHFers. A CHF or "bi-ventricular" pacemaker re-synchronizes at least the 2 main pumping chamers (ventricles and sometimes one of the smaller upper chambers as well (atriums or atria). That makes the overall blood flow from your heart the best it can be with your weakened heart, and usually increases your energy. After all, better blood flow means better oxygen and nutrient delivery to every other organ in your body. It also relieves the faint, disturbing feeling that comes from your heart trying to work as 4 different players on 4 different schedules - one for each chamber - instead of as a team. I hope this helps. Jon.
Karen K, May 24, 2000 - Hello All, Yeppers, I'm still around but keeping busy as usual. In September I went back to work part-time with the understanding that if my health became an issue I would train someone before leaving the job. I was hospitalized in January due to pulmonary edema (the first time since I was diagnosed in 1991). My meds have been changed and I've talked to my doctor about whether working was an issue and he doesn't think it is. Of course working has meant I cut back on other things. I'm having someone clean my house once a week (in part due to my spine) and that helps keep me from feeling on overload all the time. My job is as secretary at my church.
I ran across something in a publication my husband gets from his employer that deals with drugs that "gobble vitamins." Interestingly CoQ-10 is one of the nutrients affected.
Drugs that gobble vitamins: When taken regularly, some frequently prescribed medications can diminish or deplete your body's stores of important vitamins, minerals, and other essential nutrients.
Anti-depressants - Coenzyme Q-10
Anti-diabetic drugs - Coenzyme Q-10
Blood pressure medications - Coenzyme Q-10
Cholesterol-lowering drugs - Coenzyme Q-10
Tranquilizers - Coenzyme Q-10
Source: "Drug-Induced Depletion Handbook" by R. Pelton et al.
The article listed examples of each type of med but since I'm sure the list is far from completed, I left that information out. Just as an aside, I now use a face cream with CoQ10 in it? Do you think that counts towards my daily dosage? Kidding, Karen. email@example.com
Judy M's May 24 reply to Whitey's May 19, 2000 - Hi Whitey, Spironolactone is a potassium-sparing diuretic. It take the fluid and sodium out of your body, but leaves the potassium. When you first start the stuff, you spend a lot of time in the bathroom! firstname.lastname@example.org
Ginger, May 24, 2000 - Hiya's, You can add me to list of those with chills. I always have to wear socks around the house to stay warm. If my feet get cold, the rest of me follows. <lol> Okay, about the new chat room. Some of you didn't like it but I found some features on it that will help. If you click on the advanced button on the right hand side it will let you change your font size if you need to. If you click on the detached button on the bottom, it will let you make the applet bigger. This should help. I have found no problems getting in and I have tried a few times just to see if I would. I am posting this because not everyone is at the same chats on the same days and I sometimes miss being there to help you. So please e-mail me if you have other problems then the ones mentioned with the chat room. Stay well, all! Hugs, Ginger. email@example.com
Sharon J W, May 24, 2000 - Hi, More chills input: My chills and "crawly skin" sensations are directly related to my arrhythymias. My BP is so low that any irregular heart beats give me circulatory symptoms due to even lower BP. Does that make sense? It does to me. firstname.lastname@example.org
Joe S' May 24 reply to Jon's May 22, 2000 - Chills? I used to think everyone got chills and had no idea it was related to my heart. When I walk in the desert, which I have done for years, the back of my neck turns ice cold. Go figure. I have had chills off and on all my life to the point where it was almost hyporthermia. Bear with it folks, this too shall pass. Joe Stevenson. email@example.com
Jana B's May 24 reply to Robin Lynn's May 23, 2000 - Hi, First for the chills: You all should compare notes on the meds you are taking and see if these meds are causing the chills. It sounds like chills are a real CHF issue!
Secondly, for Robin Lynn and her heart rate problems. I was once told to cough when I felt my heart beat go out of whack and that it would put it back into rhythm, and it seemed to work. I would see stars, literally, but I felt normal again soon after the forced coughing. Has anyone else been told to do that? JByers4u@aol.com
Jon's May 24 reply to Jana B's May 24, 2000 - Hi Jana, I only get chills on "bad" days. They are pretty nasty but I never get them on "normal" days. Jon.
Lynn M, May 24, 2000 - Hi everyone, A thousand hugs to all of you who responded to my query about chills! It seems like we have a new symptom to add to the already lengthy list for CHF.
I noticed that a number of you have replied that you put on sweaters, long underwear, etc,... Well, I live in Southern California where it gets very hot and a big concern my husband has is that when I'm having chills, I'm totally unaware that it's blazing hot in the house. Heat puts a really great stress on my heart, inevitably triggering angina attacks so unfortunately, while heavy clothing would probably counter the chills, the basic situation would get even worse as my heart labors to cool my body. We have now discovered a "benefit" of CHF: free, eco-friendly, "air-conditioning." :-) In fact, yesterday he brought home a very powerful fan for me and this morning instructed(!) me to check the thermometer to make sure that it's not getting too hot here in the house.
Anyway, you alerted me to the fact that I should check my heart rate when I get these chills. I feel as sick as a dog when I get them, with the weakness that some of you cited. Last fall while in various CCUs, I had episodes of my heart rate plummeting into the 30s so maybe this is what's going on, along with the various arrhythmias I'm prone to. Thanks again! God bless you Jon, for bringing us all together here! Lynn, The Princess of Rales. firstname.lastname@example.org
Jon's note: I just opened a door - it's the people who step inside that make it work!
Lynn M's May 24 reply to Pam P's May 22, 2000 - Hi Pam, I haven't had a cath done through my wrist. Why is your doctor so eager to use that route? I know they like to pioneer with what seems to be cool and new, but this is serious. Do you have missing or weak femoral pulses? This is the reason that this issue came up in my case. If the arteries coming off the abdominal aorta are blocked as mine were that's one reason to consider it but I don't know of any other good reason. But note that I'm not a doctor, just a professional patient.
The reason I ask (and please, take this as a possible warning) is that an interventional radiologist told me that the instances in which they had nerve damage were when they went in through the brachial artery, which is up around the armpit. He told me this as part of telling me why he didn't want to do an arteriogram on me through the brachial artery. In case you didn't know, the angiograms that they do in cardiac caths are in fact arteriograms. Despite my having a totally absent femoral pulse on the right and a weak one on the left, they managed to get the catheter in through my groin in the femoral artery anyway.
The brachial artery runs very close to the brachial plexus, which contains all of the nerves that innervate your arm. Now, a cath through the wrist would start through the radial artery, but radial arteries should also be approached with caution, speaking from my personal experience. I suspect that a cath through the radial artery would have to eventually pass through the brachial artery on its way to the heart. I have a permanent scar on my right arm from a humongous hematoma that formed when an arterial line was put into my right radial artery. Also, they now have difficulty getting a radial pulse in that arm. Thirdly, the radial artery runs very close to the radial nerve and damage to the radial artery can affect the radial nerve, which supplies the thumb and forefinger. The hematoma that formed on my radial artery indeed pressed upon my radial nerve causing intense pain in my thumb for quite a while. If that wasn't enough, when they did my first CABG, they harvested the radial artery from my left arm to use as a graft and damaged that radial nerve to the extent that it still hurts sometimes almost 3 years and many visits to neurologist later.
I'm sorry to have gone on for so long about this but having had damage to both radial nerves, both times caused by doctors messing around with my radial arteries, I feel compelled to warn you. Radial nerve damage is extremely painful and I don't think it should be risked unnecessarily. Please discuss this in depth with your doctor and get second or third opinions if necessary! Lynn, the Princess of Rales. email@example.com
Jon's May 24 reply to Lynn M's May 24, 2000 - Hi Lynn, It is being put forward by a substantial number of "operators" that radial artery cath is less likely to cause nerve damage and also to reduce bleeding complications. The anatomy involved actually supports this hypothesis. We just don't have enough long-term results yet to prove it one way or another. I'm not going into it at length because the links in my post leads to a site that does so better than I can. Luckily, I have never suffered it, but having received messages from people who have nerve damage from the typical groin artery cath, radial nerve damage probably is not any worse than losing leg function, with accompanying lifelong leg and groin pain. I definitely agree that we always need to be alert to "trendy" procedures. Witness the Batista procedure. Jon.
Lynn M's May 24 reply to Rieale's May 22, 2000 - Hi Rieale, I'm currently in a study for a drug rather than a pacing study. I know this sounds weird but I've found that you get top-notch medical care when you join a study. Instead of seeing a cardiologist every 3 months, I get to see one every 2 weeks. On the 3-month intervals, I would almost always have some major cardiac adventure between visits anyway and end up being seen in the CCU instead.
IF you are usually seen in a teaching hospital, your condition may be tracked by the top cardiologists there rather than having your case managed by residents and others further down the cardiology food chain. Secondly, during those frequent visits, your medical condition is scrutinized so any incipient problems are more likely to be detected before they become emergencies. In my experience, any problems that arise are dealt with effectively and promptly.
So while there are risks involved in participating in a study, they may be controlled risks, unlike those we experience when our doctors are merely jumping on the latest cardiological fad, like when they ripped my radial artery out before they found out that radial artery grafts tend not to dilate in women as mine didn't, necessitating another bypass. The risk to the patient also depends on what phase the study is that you're in. Studies where they're testing drugs or devices for FDA approval have 3 phases and the later the phase, the less risk to the patient. So, you may want to find out what phase your bi-ventricular pacing study is before you agree to participate if it's a study where they're seeking FDA approval for the device.
I've heard about biventricular pacing as a promising treatment for CHF patients on TV and the web. For more on biventricular pacing in general, visit Arrhythmia News. If you tell me the name of the study you're considering (InSync, VIGOR CHF, etc,...), I'll see if I can find some more info for you. I have DSL and practically live on the web looking up cardiology info for folks so it's no problem. Lynn, The Princess of Rales. firstname.lastname@example.org
Jon, May 24, 2000 - Hi everyone, Please don't forget to peek in on the loved ones' message board and to help whenever you can! Jon.
Sharon J W, May 24, 2000 - Hi, Regarding radial cath, I am one of those who suffered nerve damage (slight) from the medics trying to insert my pacer lead through a cutdown in the brachial vein (emergency replacement). My present arrhythymia doc said that he had intended to use that vein for the new ICD and was glad I had told him in advance. He also said that women have much smaller veins, so I doubt that most of us gals could ever have the radial cath option. email@example.com
Bill D's May 24 reply to Krista's May 23, 2000 - Hi Krista, Anyone who has hypertrophic cardiomyopathy should go here. It's an association and has the best information around. I have a CD called the "Mayo Family Pharmacist." It won't let me copy it but I looked up your medicine with an eye for side effects that cause unusual tiredness, weakness or vomiting. The side effects are listed as common, less common, and rare, in that descending order.
As you suspected, Atenol (your beta-blocker) may have been the cause. Accupril, your ACE inhibitor, lists: Rare - Nausea and vomiting; Less common - nausea, unusual tiredness. Lasix washes out your potassium. Do you take a potassium supplement? Coumadin (DuPont's famous rat poison): Less common or Rare - Unusual tiredness, blue or purple color in your toes, unusual weight gain. I hope this helps, Bill D. firstname.lastname@example.org
Jack, May 24, 2000 - Hey guys, When you get the chills, you really should check your temperature. You may have a fever. I've experienced the "wonderful" natural air-conditioning too, when it was way over 100° and I was comfortable with the fever I didn't know I had. email@example.com
Jon, May 25, 2000 - Hi everyone, I want to thank everyone who has helped me with my Comp USA episode. They sent a technician (a qualified technician) to my home this afternoon and he decided to order and install a new motherboard. After speaking with him and going over the system, I agree. It will be about 1 1/2 weeks before he gets the part but at least they decided to do something constructive. He freely admitted that the letter I put up on my site is percolating throughout Comp USA in depth, and we all know that I have you guys to thank for it! So, a very large thank you, and I'll let you know if the motherboard solves my system problems when it gets here. Thanks again - you guys are quite simply the best - and I mean it sincerely! Jon.
Bev T, May 25, 2000 - Hi all, Well, I went for the tests (again) for transplant evaluation. My wedge pressures were very high (40). My doc wants to put me on Cozaar. Has anyone done well on it? He's adding it to Vasotec and Coreg to get my pressures down. My BP went up to 175/116 during the test but I suspect that was because a new med student tried to get the catheter in and couldn't! They didn't tell me he was new but it was just one of those things you "know." No wonder my BP was high! Later the "real" doc admitted that this was his first try! I'm still here, Praise God! I really want to know something about this drug before I start taking it. Thanks to all, Bev T. Mtnmama008@aol.com
Robin Lynn's May 25 reply to Jon's May 24, 2000 - Hey there Jon, Your explanations of the irregularities of the heart make way more sense than the docs'. :-) Plain English is always best for me. By the way, all my beats are ectopic (out of place). I guess this means that my "natural" pacer is gone and others just fire off as needed? I have scarring in my heart and I just figure that that is where my pacer was. I guess that's why it just gets so freaked out so much. They still say that having all ectopic beats are just as good. I hope they are right. Thanks for the info. God bless, Robin. firstname.lastname@example.org
Jon's May 25 reply to Robin Lynn's May 25, 2000 - Hi Robin, Those electrical signals from your "natural" pacemaker have to get to each heart chamber for its instructions to be "heard" too. So your SA may be scarred or it may be that the scarred part of your heart is along the pathway the signals travel. There are other "latent" natural pacemakers such as the atrioventricular node, and specialized conducting tissues, which are capable of spontaneous electrical activity. I'm not as up on arrhythmia as I'd like but ectopic means "originating in an area of the heart other than the sinoatrial node, as in ectopic beats" (Merriam-Webster medical dictionary) so maybe one of your other weaker "natural" pacemakers has taken over.
The Merck Manual says stuff that shows how amazingly resilient the heart really is. The atriums (top 2 chambers) are electrically insulated from the ventricles (2 lower chambers) except for that electrical pathway we mentioned. When it's healthy, the SA ("natural pacemaker") constantly adjusts the heart's timing to keep it at its best! Yet even after sustaining a lot of damage, and knocking out the SA, our heart can still keep going, even if not at full efficiency. That so many of us function at all with EFs only 25% of normal shows how tough our bodies really are! Jon.
Ruthie A, May 25, 2000 - Hi everyone, Chills? What are chills? Those of us women who are in menopause wouldn't know what chills were if they slapped us in the face! <g> Seriously, my own take on this is that it is probably a circulation problem due to low heart rate. I have diastolic dysfunction so my heart rate does not slow down, it speeds up. On my bad days I feel flushed and hot. Many times I think I am having a menopausal hot flash, but the hot feeling is caused by increased heart rate and blood pressure.
On another note, I am doing rather well these days with my CHF. Unfortunately, my back is acting up again and I have to go back to see my ortho surgeon. It has been less than 6 months since my surgery so I am kind of scared. I cannot walk more than about 15 steps and I cannot do any housework without setting off pain in my legs and feet that is nearly unbearable. Add this new pain to the the pain from nerve damage and you might say I am a mess. I hope we can correct this soon since we are without insurance in another week, as my hubby is being laid off again.
Speaking of which, a long time ago there was a thread in the postings about getting assistance with medications. Can anyone give me information on how to apply for help? Ruthie A. email@example.com
Jon's May 25 reply to Ruthie A's May 25, 2000 - Hi Ruthie, It's the pits about your back. As if you haven't had enough trouble for one life time already! Here are some Urls about Rx meds financial help. If anyone knows of other Urls, phone numbers, addresses or organizations for this type help, please post them!
My page about it, and The Medicine Program page. Jon.
Milt's May 26 reply to Bev T's May 25, 2000 - Hi Bev and All, I hope everyone is doing well. Bev, I have been on Cozaar for 4 years now with no side effects. I take 50mg per day. I take several other meds and have not had a reaction to any of them either: Demedex, Coreg, Altace, Glucatrol XL , Glucophage, Lipitor, CoQ10, vitamins and minerals. None of this bothers me so far. After taking all of this I sometimes have room for food. <g> Good luck with it. spaz_1@Qmsn.com
Gus R's May 26 reply to Ruthie A's May 25, 2000 - Hi Ruthie, A good site I recently found is www.rxassist.org. Type your meds or their manufacturers in the search engine, and out comes some info - usually. :-) They have a lot of toll-free phone numbers, and where the manufacturers allow it they have downloadable application forms. I've been going to write a long boring post on my experiences with some of these programs but never seem to get it done. The short version is that they all vary in their requirements but almost all exempt one if they have insurance coverage on meds. I've found allowable annual household incomes as high as $25,000 and as low as $8,000. Some will want to know everything about the applicant, and one that I get just wants the doc to sign a statement that the patient needs assistance, and that's it. I'm now getting 5 of my 6 meds free but the bummer is that the sixth one costs more than the other five put together and another bummer is that I'm poor. Good luck and best wishes, Gus R. firstname.lastname@example.org
Lynn M's May 26 reply to Ruthie A's May 25, 2000 - Hi Ruthie, The Pharma web site has the 1999-2000 Directory of Prescription Drug Patient Assistance Programs. The Url is www.helpingpatients.org/. Good luck! Lynn M, the Princess of Rales. email@example.com
Rodd M, May 26, 2000 - Hi Everyone, I just found this site. I have CHF and am so glad to find a place were I can talk about it with people who understand what I'm feeling. I am on my second year after bypass (5) and the lower artery replacement about a year ago. My heart is slowly getting worse so by the one year rule, it won't get better and at times I have questions. I'll check a few times a day on this message board so if I have any help to give, I will. If anyone out there just wants to say hi, that is cool. Thanks, Rodd. R_G_Minks@yahoo.com
Phyllis A, May 26, 2000 - Hello Jon and Friends, I haven't posted lately but I always read the message board to see what is going on with you all. I also always keep you all in my prayers so I would like to take the time to say for each of you to please have a safe and healthy holiday weekend and don't eat too much. God bless and take care, Phyllis A. firstname.lastname@example.org
Marlon F's May 26 reply to Jana B's May 24, 2000 - Hi Jana, You asked why the doctor had you cough to correct your dysrhythmia. That is called a vagal maneuver and causes direct stimulation of the vagus nerve. The heart has 2 primary nervous systems going to it: the sympathetic, which works like a gas pedal when stimulated; and the vagal nerve, which works like a brake. Different meds affect these 2 systems to slow or speed the heart. When you cough, the vagus (the brake) is stimulated and often the heart will convert to a normal (or your normal) rhythm. Other vagal maneuvers include bearing down like you are straining to have a bowel movement, light pressure on the eyeballs or even putting one's face in ice water. Please note: Do not play around with these procedures. They can cause one's heart to stop or slow down into a dangerous bradycardia (slow heart rate). email@example.com
Marlon F, May 26, 2000 - Hi, I'm Marlon and I'm a CHFer (All: "Hi, Marlon"), I'm relatively new to the CHF world - from the inside anyway. I have over 20 years in medicine as a registered Respiratory Therapist, a paramedic and a medical educator so I've seen many cardiomyopathies over the years and am now watching myself turn into one of my patients.
In October, 1999, I had an MI followed by a cardiac cath, angioplasty and stent placement. I did very well and was back at work 2 weeks post-MI, and very proud of myself. All went well until early February of this year. I was walking the ½ mile to work and suddenly became very short of breath. By the time I got there I could not walk 20 feet without having to stop and rest. I went to my cardiologist and shortly thereafter to ICU. Since then I've had several admissions, 2 more heart caths, several echos and lots of frustration. One of the cardiac caths caused an A-V fistula in my right groin, which had to be surgically repaired and as is obligatory for medical folks, got infected. This had to be surgically repaired. My ejection fraction has run as low as 16 and as high as around 40. With this good news, I asked my doctor to release me back to work and instead he told me that I needed to go on complete disability. Needless to say, I was floored. So, at this time I'm in the process of the paper games.
My current meds are: 40mg Demadex, 0.25mg Lanoxin, 10mg Lipitor, 80mg Betapace twice a day, 20mEq K-Dur, 325mg aspirin, 75mg Plavix, 5mg Vasotec twice a day, a good multi-vitamin, 30mg Restoril for sleep and Naproxen for aches and pains. My actual cardiomyopathy comes from my left ventricle taking a huge hit from the MI. Now the scar tissue has turned hard, preventing the chamber from pumping the blood effectively to my body. I was just wondering if anyone else became a CHFer through this process and if so, how our therapies compare. Keep on puffing! Marlon F. firstname.lastname@example.org
Jack's May 26 reply to Jon's May 25, 2000 - Hey hey, A week and a half for a motherboard, eh? Here's a partial copy of the note I sent them (along with an extra copy of your letter):
"I'm sure you have received this letter several times but I would like to add my two cents worth. Jon has informed us that your serviceman will change his motherboard - after he gets it - which will take one and one half weeks. Are you a computer store or a grocery store? What kind of national computer store needs one and one half weeks to get a stock motherboard? Good thing you don't sell tires. I advise everybody I know to stay away from Comp USA because it is a lousy company and this episode just proves what I have known all along. And here is Jon's letter to refresh your memory."
Brenda C, May 26, 2000 - Hi all, I am new here but I thank God that I found this site. I would like to address a question to the women of this forum to find out if anyone one else is taking Minoxidil. My question is regarding one of the side effects that I am currently experiencing: increased facial hair growth. I would appreciate it very much if there is another women on this medication, if she would e-mail me directly. I would like to discuss ways to eliminate or resolve this problem. I am starting to get really embarrassed when I have to go out in the public.
I also have experiences bouts of chills prior to my many hospitalizations in these last 3 months. I never thought of them as connected to my heart problems. As a matter of fact, each time I was admitted to the hospital, it was for pneumonia but turned out to be CHF instead. I was also running a temperature (low grade) during that time. Normally I have a low body temperature of 96.8° so when it gets up to around 98 or 99, I have a fever. I don't know if any of this helps you all but I felt I needed to put my 2¢ in anyway. Thanks again to all of you out there, Brenda C. email@example.com
Jana B's May 26 reply to Bev T's May 25, 2000 - Hi Bev, I have been on Cozaar for over a year with no problems from the drug. I had the dose upped once from 25mg to 50mg, and they lowered my Zestril dose when they upped the Cozaar. I have had no problems with it. I hate taking drugs, adding drugs, etc, but this one really has been trouble-free for me. I hope it works for you! Jana. JByers4u@aol.com
Al H's May 26 reply to Peggy's May 22, 2000 - Hi guys, I'm a long-term poster here at Jon's Place. This past year I have more of a lurker than poster. Peggy responded to Jill M the other day. Jill had been very helpful to Peg in the loss of her 21 year old son as a result of a car accident nearly 18 months ago. Peg (a registered nurse in Northern Mississippi and an e-mail friend of mine for nearly 3 years) donated all of her son's organs for transplants. Her desire to do so was much to do with the content of this site. Unfortunately his heart was the most damaged and was the cause of death, so it could not be used. Then Jill M lost her husband because of organ failure and hopefully Peg was able to help Jill some.
Last evening Peg lost her mother. Peg is a wonderful Christian and her faith has grown so much during the loss of her son and her mother's illness. Frequently she would correspond with me during the illness of her mother. She also has a child with a special disability. Peg is an active volunteer in this area of disablilities. I received this e-mail from her neighbor and thought I would share it with you. I know many of you do not know Peg but she reads this site when she can and probably needs the love and support of this site. She posted her e-mail address as firstname.lastname@example.org. Perhaps when she returns to work, she can find caring and supportive e-mail waiting on her. Al H - email@example.com
(from Peggy's neighbor to Al) "Peggy has been super-busy with her mother since Thanksgiving, so I am not sure what she has told you about her health. I haven't seen a lot of her myself since Christmas. She has been the primary caregiver for her mother, who was a colon cancer patient. Peggy has been working full-time and spending her nights with her mother in her home. While her mom was in the hospital, she stayed the nights and dressed at the hospital and worked during the day. Whew, makes me tired just thinking about it.
Tomorrow, the family will bury their mother and are at great peace because Susie looked forward to going to the wedding feast. She wore a wedding gown to be buried in. Susie Whisenaunt, who was about 66, had 7 children: 5 boys and 2 girls. They were all there at her home when it became her time. She had been in a comatose-like state for a couple of days. A church friend of Peggy's happened over with a tape of a dying patient who went to heaven and did not want to go back to earth to continue living. They were all listening to this tape.
Susie was a devout Christian believer and really wanted to go to heaven. She knew where she was going but hesitated to leave 2 unsaved grandchildren behind. At the end of this tape, her eyes opened wide and she began having trouble breathing. Everyone was touching her and crying. She then relaxed her breathing for a moment and then peacefully left to begin her journey. The grown children all began singing Beaulah Land to the last verse. They are planning to sing at the funeral.
Peggy is running on adrenalin and seems sad but fine. This is the second blow in too short a time."
Marlon F, May 26, 2000 - Hi everyone, Another note about the heart's natural pacemakers: As Jon said, the heart is one failsafe mechanism after another. Many areas of the heart can become the pacemaker. If the SA node fails, the heart will choose one of those other pacemakers. In order of preference, it will choose an atrial pacemaker, a nodal pacemaker, or a ventricular pacemaker. If the SA node fails and the heart can convince another area of the atria to become the new pacemaker, the heart will beat at a normal rhythm but the EKG will show a difference in the P wave. If the atria cannot take on the role of a pacemaker, the heart will attempt to "fire up" a nodal pacemaker. The heart rate will be noticably slower but it can still sustain life. The EKG will show the P wave as absent or in the wrong place. As a last resort the heart will use a ventricular pacemaker, which is not very effective at maintaining the body. The EKG will reflect this in a wide, bizzare looking QRS complex. If you have ever had PVCs, this is the ventricles firing at an abnormal time. A ventricular pacemaker would be like a constant run of PVCs.
When the heart is low on oxygen, any site that becomes irritated will "fire," acting as a temporary pacemaker. This is where we get ectopic beats. In atrial fibrillation, several sites fire one after the other, causing the top part of the heart to just pretty much quiver. If this happens in the ventricles, (V-fib) we can pretty much kiss it goodbye unless we are close to someone with a defibrillator. In third degree heart block, the top of the heart (atria) and the bottom of the heart (ventricles) just quit communicating. The atria fire at one rate (60-100 times per minute) and the ventricles at another (40 or less). This causes pretty ineffective pumping and usually calls for a pacemaker. firstname.lastname@example.org
Sandi M, May 27, 2000 - Hi everyone, Thank you all for the encouraging letters and prayers. Are you feeling any better, Jon? Well, I have a question. During a right heart cath, what does the doctor mean when he says the heart is too wet or too dry? Also, what causes this? I was pretty out of it at the time and never got to ask him. One more question: why do they go in your neck for that? I am scared enough of caths but that really had me shook up. If anyone out there can answer, I thank you. I'm sorry I have taken so long to respond to all your warm and helpful e-mails but I have been feeling kind of wrung-out and not out of bed much the last 3 days. Jon, your transplant site is very informative, also very scary. Best wishes for a safe holiday to everyone. Sandi. email@example.com
Jon's May 27 reply to Sandi M's May 27, 2000 - Hi Sandi, I was hoping that including personal stories from heart transplant recipients would take the edge off the hard medical info on the transplant pages but only Taavi actually got a story to me. I understand though, since transplant recipients generally have their lives full already and reliving the process is kind of tough for them. Still, if anyone who is waiting for a donor heart or who has had a heart transplant wants to send me their story - in part or in full - just e-mail it to me and we'll work together to get it on my transplant pages.
The reason they go in through your neck (jugular) is usually to get pressure readings from the blood vessels that go between your lungs and your heart. It's called a Swan-Ganz cath and it is not always necessary. It is usually done when you get your first diagnostic cath for CHF to check those pressures and while they're there, they usually do a heart biopsy as well. Jon.
Trish, May 27, 2000 - Hi Jon, I've been reading the posts for several months but this is my first. Thank you for all the info. It has been invaluable. Thanks for helping me realize that I'm not alone. My church and family have been marvelous since my diagnosis 2 years ago with IDCM and CHF, but they don't truly understand the day to day things. Thanks again, trish. firstname.lastname@example.org
Robin Lynn's May 27 reply to Marlon F's May 26, 2000 - Hello Marlon and welcome to our gang, It's very unfortunate to meet you like this but we're pleased you found us. I am greatly interested in what you wrote about ectopic beats. Here is an old report, but all 3 reports of which I have copies (all different Holter monitoring sessions) refer to ventricular or supraventricular beats. One report is like this, "Ventricular ectopic activity included 8176 beats, including 29 triplets, 1126 couplets, frequent PVCs and 7021 single beats. Ventricular beats occured at the rate of 423.9 VEs per hour. 58 minutes 24 seconds of tachycardia, 7 seconds of bradycardia. Supraventricular activity consisted of 81 PACs." I have been told not to worry about this!
I have noticed that each one of my Holters differ in the number of beats that I have had over the 24 hour period; by 10,000 beats in one reading from another. By the way, I had no symptoms during this Holter so it leaves me wondering what is going on when I hit the floor, can't breathe and feel like my heart is stopping and I'm gonna die. I did see runs of 5-6 PVCs during my stress test, which led me to have a cardiac cath. My cardiologist says the anti-arrhythmic drugs are more dangerous than the arrhythmias at this point.
When I read your post and saw your comments about the ventricular pacers, I wonder if you'd get the impression that is what might be going on with me. I never have a third beat but when it goes crazy, I can't stop it, even by coughing. Sometimes I cough automatically during runs of PVCs. Thanks for your info. Maybe I need to find a new doc? God bless you, Robin Lynn. email@example.com
Al M, May 27, 2000 - Greetings, It has been awhile since I wrote, and I regret to use the following as my reason for posting. Cris Clarke of Los Angeles died last Wednesday. The following is a note from Cris that he asked his brother-in-law to forward to anyone who e-mailed him.
"Greetings, Folks. Today it is pretty evident to me that I have gotten to Stage 4 with my CHF condition. (We all know that that means Congestive Heart Failure, don't we?) Things are a tad bleak and physically difficult. I shall ask my brother-in-law to open this and send it off when I escape this plane. I hope you all are doing well but as for me, this isn't much fun and I shall be glad to get on to the next phase. Good luck, Cris Clarke."
I came to know Cris via our ocassional "chats" and e-mails. He had moved from Los Angeles further north in California and was planning on getting up near the Oregon border. I found Cris to be a very interesting and complex individual, and enjoyed our conversations very much. When he learned that I had gone back to graduate school in history, he would come up with some of the most outlandish questions about some area of history and carry on as if it were the most important point. Naturally I would rise to the ocassion and respond, trying to set him straight, at least on the historical points. His replies always told me that he had "gotten me again." He frequently said, "Well, you didn't think I was serious, did you? I don't know anything about history." I know of only a few of his adventures but it sounded like he enjoyed most of his life. How many kids get to go to sea and live on a large sailboat for over 10 years in Mexico, Panama and other ports in Central America with his family?
I shall miss him. Al M. (TexAl) firstname.lastname@example.org
Jon, May 27, 2000 - Hi everyone, I heard from Robin W yesterday. If anyone is seeking an active e-mail address for Robin, please e-mail me. Robin had a bout with kidney failure and spent a lot of time in the hospital recently. Jon.
Lori P, May 28, 2000 - Hi everyone, I asked my doctor at the warfarin clinic about the ups and downs of my INR. He wasn't too worried and said that many people have to constantly adjust their Coumadin dosage. Then he said that hopefully in a couple of years it will be different, because there's a new anticoagulant. email@example.com
Sally's May 28 reply to Bev's May 25, 2000 - Hi Bev, I've been on 50mg Cozaar since my initial diagnosis of CHF and IDCM in September of 1999. I have had no ill effects from it or any of my other meds since then. These include Coreg, Lanoxin, lopressor, spironalactone, Lasix, a coated aspirin, plus my old faithful "lady's pill" Premarin. I've been taken off Lanoxin, as my EF has improved to just over 40% and the doc says I don't need it now. This is up from an initial EF of 10%! My diagnosis came for me at age 49. I'll be 50 in July.
I feel quite well these days and have more stamina than I have in years, probably due to my increased excercise and better diet, in addition to the meds. I don't really like all the drugs but if they keep me here that's fine with me! I still have my tired times but then I take a good nap or just relax. I figure, why fight it? I really enjoy the good times while I have them and am especially thankful for them, too! I wish everyone peaceful days. Thanks to all the veterans of all the services, and all who have sacrificed their lives in service, and also to their families. My usband served 20 years in the US Navy, so I know what sacrifice the families of service members also make. firstname.lastname@example.org
Sox Nelson, May 28, 2000 - Hi, This is just a change of address. Thanks. email@example.com
Beverly, May 28, 2000 - Hi, I appreciate everyone warning me about their medical problems, therfore I need to relay my recent catastrophe. At my second cath I used a different hospital. When time came to remove the sheath from the femoral artery, only one nurse came in. She attempted to pull the sheath before she removed the stiches, then cutting them with sissors from her pocket, which were not sterile. She pulled the sheath again and lost the artery. She never regained control and caused severe bleeding and anxiety for myself as well as my husband, for 70 minutes. She finally had my husband call for the floor supervisor, who was able to get the bleeding stopped. The point is to never allow one nurse to attempt this. I understood at the first hospital that you must have a backup in case of an emergency such as this. I was told that protocol called for only one nurse at this hospital and they do not have to be a critical care nurse. I'd never allow it again! What has been your experience? firstname.lastname@example.org
Jon's May 28 reply to Beverly's May 28, 2000 - Hi Beverly, The cardiologist/operator did it for me with an associate and a nurse in attendance. It was quick, painless, and with only a small spotting of blood. I did not receive an artery sealing device like an Angioseal, so I never received any stitches. Jon.
John Klose, May 28, 2000 - Hi, I have been asked to participate in a double blind, randomised placebo controlled study to assess the effects of Ro-47-0203 (Bosentan) on the morbidity and mortality of patients with chronic heart failure. If you are interested in participating in this 18-month study contact:
Najam A. Awan, MD
2500 Marconi Avenue, Suite 310
Sacramento, California 95821
Contact Terrie Wheaton, Nurse in charge.
Jon's note: Bosentan (Tracleer) is an endothelin antagonist. Trials include ENABLE (endothelin antagonist bosentan for lowering cardiac events in heart failure) and REACH (research on endothelin antagonism in chronic heart failure)
Barbara F, May 28, 2000 - Hi, I need some info about heart medication and migraines. It seems I have started getting these headaches about every 2 weeks. I went to see my cardiologist. He had told me go off the nitro patch to see if they stopped. Well, they didn't. I was just wondering if there is anyone else out here at Jon's site that is getting them and what are you doing about them. All sorts of things going through my mind about heart meds: Coreg, Cozaar and digoxin. I am wondering if any of them could be causing the headaches now. When young, I used to get these but they had stopped for over 25 years so why are they back? I am hoping for some enlightment. God bless, Barbara F. BFletch@ivic.net
Jon's May 28 reply to Barbara F's May 28, 2000 - Hiya Barbara, I get migraines. For those who don't get them, I'll explain a bit. If your headaches do not follow this pattern, they are not migraines - which doesn't mean they aren't bad! Migraines only affect one side of your head. They make you sick to your stomach and often make you throw up rather violently. They can give you diarrhea and often affect your vision, causing blurring, inability to focus at all or spots (in my case, silver patches) floating across your field of vision at random. The head pain can be constant or piercing in "spikes." Often, another type of headache is mixed in - muscle tension or cluster headaches being the most common; the combination can put you down hard, believe me.
Unfortunately, Rx migraine relief is not for CHFers since it speeds up the heart rate and can promote arrhythmia. After age 50, 99% of people with migraines have them fade and go away, never to return. No one knows why. My migraines have actually gotten better since getting CHF, but I attribute that to being saved as much as anything else (far less stress in my life). As far as I know, heart meds have little effect one way or the other on migraines. However, since migraines are considered a blood flow/blood vessel problem, it is certainly possible. Does anyone else get the boogers? Jon.
Jill S' May 29 reply to Marlon F's May 25, 2000 - Hi Marlon, I found your description of the heart's attempt to pace itself very interesting. I have a LBBB. Can you tell me what parts aren't communicating? Thanks. Jilschrod@cs.com
Wanda G's May 29 reply to Jon's May 28, 2000 - Hi Jon, I wish I had known about your site when Richard, for some unknown reason, developed a form of migraine/cluster headache. It lasted approximately 3 weeks. The doctors could not explain or fix it. I would caution anyone to be careful about headache or pain medication. Richard's medication balance is so delicate that when they tried to treat his pain in the emergency room, his blood pressure dropped and he "went into heart failure." When we got home, I found oddly enough, that over the counter Tylenol Extra Strength offered the most relief with the least damage. His headache disappeared as mysteriously as it came. We have been married 20 years and he has never had a headache that I can recall. Has anyone else found the why? email@example.com
Robin Lynn, May 29, 2000 - Hi guys, Well here I am with my 2¢ worth again. I do occasionally get a real migraine. I don't know what brings them on but I have a feeling that it is from not getting enough blood to the brain. I have headaches all the time and I am convinced they are caused by my arrhythmia problems. I say this because I get the headache during and for many days after I have an attack of arrhythmia; the ones that land me on the floor. The worse the arrhythmia, the worse the headache. I know the difference between an every day headache and a migraine. My doc had me checked by a neurologist and she prescibed depacote for me. She also got really upset with me for refusing to take it. She explained to me that I would have to have my liver enzymes checked every 3 months so I kindly told her that I am on enough meds that could possibly do liver damage and no thanks! A Loricet when they get too much for me to handle works for me. It's better than another daily pill.
Barbara, I am really sorry that you have to deal with these migraines along with all the other problems you are dealing with. I know how painful they are and I hope you get relief soon. Did you ever check into the procardia versus nitro for chest pain? Are you having chest pain without the nitro? God bless you and please let us know how you are doing. Robin Lynn. firstname.lastname@example.org
Sherrell G's May 29 reply to Jon's May 28, 2000 - Hi Jon, I also used to have severe migraines before my heart problems started. Since then I have not had any. I also had severe shoulder pain for which I wore a Tens unit. That pain left too. I don't know why, but I sure am not complaining. :-) email@example.com
Barbara P J's May 29 reply to Barbara F's May 28, 2000 - Hi Barbara, I also do the migraine route. Do you take hormones? If so, they may be the culprit. That's what happened to me a few years back. I had the headaches before, but when I started HRT (hormone replacement therapy) they increased. I would go off the HRT and bingo, the headaches were far fewer. Since being on this last round of meds I have only had to take migraine meds about 4 times. This is just one thought. Jon, I know you don't take hormones! <lol> firstname.lastname@example.org
Ginger, May 29, 2000 - Hiya's, My oldest sister gets migraines and has for most of her adult life. She is now 56 and still gets them. I hope heart meds do not add to them because they treat hers with beta-blockers, and Elavil and Foiricet. They have never found a cause or reason why she gets them and she has been to a lot of doctors for answers. Stay well, ya'll. Hugs, Ginger. email@example.com
Lynn M's May 29 reply to Barbara F's May 28, 2000 - Hi Barbara, I am soooo sorry to hear about your migraines. I used to have them before going through "surgical" menopause and I know how excruciating they can be. Jon's right about anti-migraine drugs being contraindicated for CHFers. However, one thing that you can do to ease the pain somewhat is to put an ice pack over the back of your neck at the base of your skull. It's best to do this as soon as you see the aura start (if you get the aura), which in my case used to show up about 30 to 45 minutes before the pain started. When I was stationed aboard a US Navy ship, the doctor would give me a big shot of Demeral so I could sleep through it in a darkened room in sick bay but unfortunately not everyone is lucky enough to have access to that. Lynn M. firstname.lastname@example.org
Rieale's May 29 reply to Jon's May 28, 2000 - Hi Jon, I began having migraines when I was around fifteen. This just so happens to be when I was able to trace my heart starting to weaken (through medical records). I don't believe these two are coincidental. Now that I am under treatment I have yet to have a migraine. I don't know whether this is a coincidence or not but I'm going with it. Rieale@aol.com
Lynn M's May 30 reply to Beverly's May 28, 2000 - Yikes, Beverly! I've had 8 caths at 3 different hospitals. Every time, a doctor or a specially-trained nurse pulled the sheath. The nurse who pulled yours obviously didn't know what she was doing. The one nurse who pulled mine was an ICU nurse who had another nurse as backup. Seven of my caths were at VA hospitals and only doctors pull them there. After pulling them, they put both hands on the puncture site and lean heavily on it for at least 5 minutes. Once, they used something like the AngioSeal (as Jon mentioned) called Fem-Stop instead of the usual sandbag and ice pack treatment after the 5 minutes of pressure, but if you ever have one of those things put on you, make sure they do it right. A doctor put mine on incorrectly and I was in hideous pain until another doctor adjusted it correctly. Lynn M. email@example.com
Rick M, May 30, 2000 - Hello all, Another year, another 300,000 fewer WWII veterans walking around so I felt that those of us remaining should take a moment to thank God for all favors. It gets harder every year to remember that most of the people you talk to every day don't share your memories. They can't be blamed for not understanding what they've never been taught but it does make your circle of conversationalists narrower and narrower. Being blessed with CHF and knowing how difficult it is for others to understand you, makes it a little easier for you to know how our diminishing group feels. Well, onward and upward. firstname.lastname@example.org
Lamar Mangham, May 30, 2000 - Hi, I am so happy to find this site. I am 75, and had a heart attack in 1978 and open heart surgery in 1981. Now I have CHF. The doctor says my heart is operating at 35% efficiency and I can't tie him down as to what this means in terms of how much longer I might live. Perhaps that is a question he avoids because he himself doesn't know. I feel pretty good although I am easily fatigued and sometimes short of breath. At present, I am taking 25mg Aldactone, 7.5mg Norvasc, 300mg Avapro, 200mg Cordarone, 5mg Proscar for my prostate, baby aspirin and Vioxx for arthritis pain. I guess I am in pretty good shape. As of now, I only go back to the doctor's for routine visits. I do have a physcial handicap which limits my exercise options. I just wanted to talk to someone. God bless and all take care. email@example.com
Jill S' May 30 reply to Jon Klose's May 28, 2000 - Hi Jon K, Do you live in the Sacaramento area? I saw an ad in the paper for the trial study. What can you tell me about it? Thanks, Jill. Who is Dr. Awan? Jilschrod@cs.com
Bill D, May 30, 2000 - Hi Everybody, I found the best potato chips! The ones that are lightly salted have 100mg of sodium to a 1 and 7/8 ounce bag! The salt-free ones have 20mg of sodium to the same size bag. These bags are big! They are called "Dirty Potato Chips" because they don't wash off the potato juices. They cook them in peanut oil. They are made by: Dirty Potato Chips, Gramecy, LA 70052-1533. A mail order hot line is (800) 347-8972. They are sold in Publix Stores at 79¢ a bag. They taste great! Bill D. firstname.lastname@example.org
Roger H, May 30, 2000 - Hi, I was just wondering if anyone has given thought to the allergy season that has now come upon us. These can be a source of many wildly painful headaches caused by the allergic reactions in our sinuses. Also they can be caused by some of your neck joints being slightly out of alignment as well; Just some other things to think about other than finding blame with our hearts, which are taking the blame for plenty now. <g> I am on muscle relaxants and painkillers for a back problem but when I run out of them, I begin to get these terrible migraines. It may be coincidence, maybe not, but I spent 45 years suffering with them till I was started on these back meds. I don't suffer with them while I am on them. Just my 3¢ worth. (Canadian pennies aren't worth much! <lol>) email@example.com
Linda G, May 30, 2000 - Hi Jon, I hope you feel well. I used to get migraines very badly. They were so bad and would last so long that I was in the hospital for about a week. I could not keep food down and had to have a strong narcotic every 4 hours on the dot. The pain would be in my head on one side and was unbearable beyond words. I still get them once in awhile and have my husband rub the back of my neck. My sympathy is out there for those who suffer from them. Good health to you all. God bless you all every day. I love this site. firstname.lastname@example.org
Lynn M, May 30, 2000 - Oops, there's one thing I forgot to mention about heart drugs and migraines. Beta-blockers are often used to "treat" migraines. My sister and I were both put on beta-blockers (Inderal, propanolol) for our migraines back in the 1970s and 1980s, and they really did help. You have to take them daily whether you're having a migraine or not. Barbara, hormones can indeed worsen migraines in women. After my hysterectomy and after I stopped taking Premarin, my migraines became "optical migraines" where you get only the aura and a very mild headache. Then, as yet another "benefit" of heart disease, the beta-blockers taken for my heart disease stopped even the optical migraines. Lynn M. email@example.com
Lynn M's May 30 reply to Rieale's May 29, 2000 - Hi Rieale, I wonder if anyone has ever investigated whether there is a connection between migraines and heart disease. After all, both affect the circulatory system (though distinctly different areas of it). Or maybe it's just a coincidence that so many of us with heart disease also have had migraines. My late aunt who had heart disease and died a year to the day before my first heart attack also suffered from terrible migraines. But Rieale, if you're on beta-blockers, it's probably not a coincidence that your migraines have improved (see my other post.) Lynn M. firstname.lastname@example.org
John Len, May 30, 2000 - Hi everyone, Migraines seem to run in my family as an inherited trait. They have been in the family since at least my great grandfather. Some in the family get them and some don't. I personally did not get headaches (post-drinking days) until I started taking heart medications and it was not the nitro causing them. They seem to come on when I start standing up and walking around. The doctors have no explanation. John. email@example.com
Bill M's May 30 reply to Lynn M's May 29, 2000 - Hi Lynn, You posted about auras. Do you mean a kaleidescope of colors in a crescent shape? I have had those many times but never had a headache with them. I feel very weakened and I lay down for about a half hour and it slowly goes away. The colors are there if my eyes are open or closed. Thanks, Bill, EF 16%. firstname.lastname@example.org
Tom S, May 30, 2000 - Hi, For months and probably a couple of years I would develop low grade headaches, which were more annoying than painful. To someone else they may have qualified as a migraine but after years of intense dental pain I usually tolerate other pain quite well so I have a difficult time quantifying it. Anyway, after I was diagnosed with type 2 diabetes and given a prescription for Glucatrol I noticed that there seemed to be a direct correlation between my sugar level and the headaches. I also noticed that the headaches went away shortly after taking my morning dose of Glucatrol and if my sugar went out of whack (I am required to monitor blood sugar daily or as needed) I noticed the headaches would set in. I am merely suggesting that some of these folks may be in the early onset of diabetes and don't even know it yet. It's another possibity. email@example.com
Eva M, May 30, 2000 - Hi Jon, On my last visit to the doctors, they wrote me a prescription for xenical. I know that you were on this drug and wonder what your results are. Thanks, Eva. Cisssy99@aol.com
Jon's note: Wasn't me. Sorry.
Jean C, May 31, 2000 - Hi, Does the humidity affect anyone else? I am an avid gardener and this year I am really having trouble breathing when the humidity goes up. I was diagnosed with CHF after a heart attack last July and this is a new problem for me. It's really cramping my style.
I have a side comment on the sheath in the cath procedure. A few years back when I had my second cath, a nurse came in to get me up to walk before they had removed the sheath. Thank God I knew enough then to protest and since have tried to really watch when I am in the hospital but you really have to trust somewhat. Have a good summer everyone and God bless. firstname.lastname@example.org
Jon, May 31, 2000 - Hi everyone, First, if anyone knows of a CHF-type support group in southern California, please e-mail me the info. I will forward it to a reader who seeks that information.
Also, the Comp USA PC outbound tech guy was here today and replaced a part, then discovered the system board needs replacement so that is now on order. So it goes,... Jon.
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.